It is that time of year again-everyone is excited for the upcoming holidays. Halloween just passed, up next is Thanksgiving, and then there is Christmas. (or whichever religious/nonreligious holiday you follow)
Everyone is excited about decorating, having debates about when to put up the Christmas tree, if it's too early for Christmas songs blaring throughout the day and considering what they are going to get their loved ones for presents.
Holidays are supposed to be a time of togetherness, great food, conversation, and relaxation.
Holidays aren't so cheerful for all us. Don't get me wrong, I love holidays, I really do but lets face it-I have more to worry about in the holiday season other than what's listed above.
As a special needs mom, I have a lot to consider. If you haven't been following us so far, my son is now 6, he is nonverbal, has autism and a lot of sensory issues.
Sensory issues can be a show stopper. There are lots of different and new smells, decorating can be too overwhelming-making the environment too busy, there is usually a lot of family so the noise levels shoot through the roof. Holidays can be a sensory meltdown counting down to detonation.
My son is also a wandered. He has no sense of danger. He thinks running in the road is ok, that sharp knives look like a cool toy, the steam coming off boiling water is some sort of magic that he must touch. He is also an over-stuffer. Choking is always something to be watched for.
I'm not sure everyone thinks of these things. How hard holidays can be for us special needs families. How stressed we can be at a time of celebration. All the preparing we do, whether its pictures or social stories, making sure the iPad is charged and we have the favorite snack and movie. How we scope out potential sensory nightmares.
Watching him is what I do at parties. Making sure he doesn't do this or doesn't get into that or he just took off, making sure he isn't getting too far. If he got lost, he couldn't yell for help.
Plus we have the...
Is he actually going to eat? Will he even participate in opening gifts? Will he be able to handle the situation to be social? At least some parallel play?
The...I hope he doesn't break any of the decorations while we are here...
It can be overwhelming for us, as parents too.
(*I am in no way speaking for us as a community but I'm sure I can relate to a lot of you*)
But..
What if your gift to me was, to let me relax, enjoy the conversation, eat the great food while its hot?
What if everyone took turns helping, being the eyes in the back of my head, making sure he was ok while I ate. Taking him to a quiet place when he is starting to show signs of impending sensory meltdown.
That, my friends and family is a holiday I think everyone could enjoy.
I ask you to please just consider it from our perspective. All we want is acceptance and even though our pride is sometimes too big for our own good...a little help.
Happy Holidays everyone!
Momma Day Dream
Friday, November 6, 2015
Tuesday, September 22, 2015
Little Boy Gone
I have always been a suffer in silence type but the past 9 months have been hard, especially the last 6 of them.
I can't keep my emotions in check, they need a place to spill out.
I only write when I need to, when I have the urge I can't shake.
If you haven't followed us so far, here is a quick recap.
Luke is 6, was diagnosed at 2 with autism, he is nonverbal, has anxiety and new diagnosis of P.A.N.D.A.S. This new diagnosis has been hard.
He was hospitalized this past January for a lymph node infection from reoccurring strep. Since then he has had big behavioral changes, he is mean, aggressive, and physically violent. He seems to have some OCD now.
Yes he has meltdowns and he would get frustrated but this is something else entirely.
My boy has gone missing.
We've been doing meds for months with only slight changes in his behaviors.
Is it a PANDAS thing, an autism thing, a med thing?
I feel helpless. I feel like I can't reach him. I feel like I can't help him.
When Lukas was 15-18 months he went thru a huge regression, I felt like within months the boy I knew was gone.
I am having to face all these feelings again.
I am having a hard time trying to remember when he wasn't aggressive. The look in his eyes now is just anger and mean.
My heart breaks. He is having issues at school, attacking his aide/teacher/students. He is not wanting to work, spitting on the floor, having meltdowns and tantrums.
Everyday I hope for better news.
He does have better days, he isn't always aggressive and I try to concentrate on that.
I have no answers right now.
I have no way to feel better.
I just have hope. Hope that I will find him again someday. Hope that my heart will stop breaking into a thousand pieces. Hope that he won't be so angry and that he will find peace.
Only time will tell but I will be here with him as long as it takes. Being stronger than I ever thought possible, all out of my love for him.
Sunday, May 24, 2015
Living Nightmare
What do you do when every day is a nightmare?
You make it through one day, chanting the mantra,
"this too shall pass",
"tomorrow is another day",
"just please get through this day",
"tomorrow will be better"
You are pushed and pushed everyday until bending is no longer an option and you break.
Gut wrenching, hair pulling out, ugly cry with some screaming everyday.
Every day chips off one more piece of yourself, your soul, your heart.
Every day I am hit, kicked, bit, scratched, hair pulled. Sometimes knives are involved, I've almost been stabbed 3 times because he simply doesn't understand that knives are dangerous. No matter how high we put them or how we lock them up, he finds ways.
You try to restrain, keep calm, teach, soothe, try to make someone understand. Try to teach him that running away isn't good, that hitting is bad, that the roads are dangerous, boiling water is too hot, knives and scissors are sharp. Each day it seems to get worse. Each outburst is longer, each physical attack is more violent, things set him off more easily.
After its over, you sit, you scream, you cry.....why me? What have I done? This is not fair. Why is this happening? What can I do to stop this? Doesn't he see what he is doing to me? Doesn't he know this behavior isn't good for him or me? Why is he so angry? Why does he have to destroy everything?
Then you start to get scared....of your own child. When I tell him no, will he come after me? Come after his sister? When he wants to do something that is dangerous and I have to step in, will be physically attack me? What will be destroy in the house before I can reign him in?
Why can't he see reason?
Why can't he see he is destroying me?
Why can't he see he is destroying the house?
Everyday I try.
Everyday I start off fresh.
Everyday I put a smile on my face and try to face the world.
Everyday I lie to people about how I am.
Everyday I hide what is happening.
Everyday I think about not being able to handle it anymore and thinking...I can't do this, this isn't life, I don't want this anymore.
I try to still carry on like normal.
Try to take him out, try to have fun. It ends in disaster.
Everyday I cry for my child.
Everyday my heart re-breaks for my child.
Everyday I try to be stronger than I am for my child.
Everyday I pray for him to find peace that isn't coming.
We are trying to get a behavioral case manager. I am considering meds. Appointments have been made.
How can someone so sweet and loving turn so violent and angry in the blink of an eye?
How can I help him?
How can I help myself?
I am but a mere fragment of what I once was.
Yet I carry on, I take care of both my kids, I go to work, I cook, I clean, I do the yard work, the washing, the folding, I carry the burden of stress of what is happening with me every where.
Most days are a marathon of my life. Just get to Point B from Point A. Treading water, clinging to some hope that I wont get too tired and drown.
It is no way to live.
And I don't have answers and the magic fix button.
This is my life...
My everyday. My nightmare.
This has no happy ending. There is no light at the end of the tunnel right now.
My hope is that one day there will be.
That these appointments and specialist can help.
That he finds joy and peace.
That he can be a normal boy.
You make it through one day, chanting the mantra,
"this too shall pass",
"tomorrow is another day",
"just please get through this day",
"tomorrow will be better"
You are pushed and pushed everyday until bending is no longer an option and you break.
Gut wrenching, hair pulling out, ugly cry with some screaming everyday.
Every day chips off one more piece of yourself, your soul, your heart.
Every day I am hit, kicked, bit, scratched, hair pulled. Sometimes knives are involved, I've almost been stabbed 3 times because he simply doesn't understand that knives are dangerous. No matter how high we put them or how we lock them up, he finds ways.
You try to restrain, keep calm, teach, soothe, try to make someone understand. Try to teach him that running away isn't good, that hitting is bad, that the roads are dangerous, boiling water is too hot, knives and scissors are sharp. Each day it seems to get worse. Each outburst is longer, each physical attack is more violent, things set him off more easily.
After its over, you sit, you scream, you cry.....why me? What have I done? This is not fair. Why is this happening? What can I do to stop this? Doesn't he see what he is doing to me? Doesn't he know this behavior isn't good for him or me? Why is he so angry? Why does he have to destroy everything?
Then you start to get scared....of your own child. When I tell him no, will he come after me? Come after his sister? When he wants to do something that is dangerous and I have to step in, will be physically attack me? What will be destroy in the house before I can reign him in?
Why can't he see reason?
Why can't he see he is destroying me?
Why can't he see he is destroying the house?
Everyday I try.
Everyday I start off fresh.
Everyday I put a smile on my face and try to face the world.
Everyday I lie to people about how I am.
Everyday I hide what is happening.
Everyday I think about not being able to handle it anymore and thinking...I can't do this, this isn't life, I don't want this anymore.
I try to still carry on like normal.
Try to take him out, try to have fun. It ends in disaster.
Everyday I cry for my child.
Everyday my heart re-breaks for my child.
Everyday I try to be stronger than I am for my child.
Everyday I pray for him to find peace that isn't coming.
We are trying to get a behavioral case manager. I am considering meds. Appointments have been made.
How can someone so sweet and loving turn so violent and angry in the blink of an eye?
How can I help him?
How can I help myself?
I am but a mere fragment of what I once was.
Yet I carry on, I take care of both my kids, I go to work, I cook, I clean, I do the yard work, the washing, the folding, I carry the burden of stress of what is happening with me every where.
Most days are a marathon of my life. Just get to Point B from Point A. Treading water, clinging to some hope that I wont get too tired and drown.
It is no way to live.
And I don't have answers and the magic fix button.
This is my life...
My everyday. My nightmare.
This has no happy ending. There is no light at the end of the tunnel right now.
My hope is that one day there will be.
That these appointments and specialist can help.
That he finds joy and peace.
That he can be a normal boy.
Friday, April 17, 2015
Worst fears come true
I haven't wrote in a very long time, I am sitting here trying compile my thoughts, please bare with me.
As a little background for anyone new reading this, Lukas is 5, on the spectrum and is nonverbal. He has no sense of danger, and often finds mischief. (very much a small nutshell version)
Everyone has fears. Some people learn to conquer theirs, others let it define their lives. To outside people, fears can seem small and insignificant but to you, it is never small.
I have multiple fears, some more typical than the rest....spiders, bees, pitch black.
But what about those bigger fears, the not so typical ones, the ones we try to hide? What happens when those become true?
I cannot truly put into word how it feels when your worst fears come true; but for the sake of getting this important message out there, I will do my best.
Almost every day there is a new story on my Facebook news feed of another Autistic child gone missing. People on the outside are often quick to judge the parents or caregivers. I've heard all types of bashing; if you were paying attention that wouldn't have happened, do you even care for your child, why would you let this happen? The list goes on.
But yet those same people, and I have heard this personally more times than I can count...
Let him be, don't hover, let him run, let him be a kid, let him explore.
No....I cannot do these things...and here is why
To us on the corner of Autism Ave, we know that sometimes our kids...they just have this will and you know the saying...when there is a will, there is a way. Believe me when I say, it can happen extremely fast! Thankfully my story has a happy ending but so many others do not. Here is the story of how my worst fear came true, how I lost my son for almost an hour...
Another typical day of trying to wrangle him to school. Him not wanting to put on clothes, throwing a fit at the sight of his book bag, carrying his almost 60 lbs butt out the door.
It has finally been warming up, so we decided to walk/run up and down the sidewalk while we wait for the bus (waiting and patience isn't exactly his gig). We were having a blast, it was a little windy and he loves to feel the wind blow in his hair. He ran back towards the house, I was behind him by maybe 15-20 seconds if that. Thinking, where could he possibly go? He often stops around the corner and crouches down and giggles when I come around and jump out.
What happens when you turn that corner and there is no boy? You look at the porch and there is no boy? You look at the other side of the house and there is no boy?
True panic sets in. Your heart immediately goes into your throat and it feels like it is beating harder and faster than a normal heart could bare.
A million things start to go through your mind at once. Where could he have gone? Was the front door open? The back gate to the neighbors is open, did he run back there?
You start to scream his name in hopes of him popping out and finding you. You start to run and look and get more worked up as each second passes that he isn't there. You start to realize that he can't talk and won't say "over here momma, gotcha!"
As you are running and yelling and looking, more thoughts run through your head. Was he taken? Did I look to fast here? Should I try to look into the house? If I look into the house and he is outside, will he get farther away? Where do I go? What do I do? You scream...and run...and look more.
After what felt like a lifetime (maybe 5 minutes) I call the police. During this time the school secretary who lives two houses down and was leaving to go back to school from her lunch is now helping look for him. The police keep me on the phone, beg me not to hang up as I am losing my mind, my ability to think clearly. I get impatient, I want to run and scream and not talk on the phone. I search places over and over again. I scream his name a thousand times.
Police and fire rescue show up in about 5-10 minutes (I have no grasp on the time). I'm calling my mom and his dad to let them know. I am getting asked question after question when all I want to do is run and find him.
They ask me what he is wearing, what he looks like, if he has any hiding places he likes to go.
I tell them he likes to hide under things and look for water.
The thought of water almost brings me to my knees. What if he finds a pool or water? What if he drowns? No....no I can't think about that.
What if he makes it to the busy road? No surely someone will see him by then right? He can't make it there! He won't!
Your heart feels like it is going to literally burst out of your chest. There is so much anguish and anxiety, you don't even know how you are still upright. You just keep thinking, you have to find him...now!
More people start showing up, people with dogs, people from the neighborhood, more police. I keep running through all the back yards. It feels like hours instead of minutes have passed. Multiple cops search my home, with me and without.
I start going thru the neighbors back yard again and there is a gentleman with a dog. Whether it was god or mothers intuition, I ask him to see if the sliding glass door is unlocked (he is obsessed with ours). My neighbors aren't home so he isn't sure if he should. I take off up the street. More screaming and looking. Again it feels like forever, the anguish is starting to take full control and I finally just drop to my knees. I just sit and pull my hair and scream his name over and over and over again. I see a blue truck coming down the road, he stops and says are you mom? Oh God! This could either be very good or the worst news of my life. I say yes...in movies there dramatize things...makes things look slower than normal....but it does happen. Its like everything stopped for a few moments while I waited to hear what this man had to say...tick tock tick tock.
"They've found him! Get in and I can take you to him."
They found him? Really? Is he ok? Where was he? How far did he get? Oh my God he is alive! I will see my boy again!
We pull into my drive way but there is no Lukas. Where is he?! You said they found him! Where is he?!
They will bring him to you any moment.
Why can't I just go to him? Where is he?
Then he rounds the corner with officers and the man with the dog (I think). I run...I hug...I cry...
They try to tell me to not upset him, to not scare him....
My first reaction was the smack the living shit out of the however said that but I know otherwise. They were right. He was safe and that's all that matter. I didn't need to traumatize him just because he eloped and traumatized me.
They said he went through the neighbors sliding glass door and was found playing with the grandkids toys in the living room. He was content and had a smile on his face.
He had never been to our neighbors house before. He had never even been in their back yard. But this day, when the neighbors gate had been slightly opened, and the back door unlocked...I lost my son within 20 ish seconds for almost an hour.
I hugged him and smiled and made him look me in the face and told him I loved him. I called him a little shit for scaring mommy like that. I tried to explain why this wasn't good behavior.
For hours I did nothing but cry and shake. There was too much adrenaline and anxiety and all kind of emotions I have never experienced inside me. I had to remind myself over and over that he was safe and unharmed. It was still so hard not to think of what could have been. I was the lucky mom who got her child back. So many others didn't get this happy news.
Elopement is a very real risk. It is truly terrifying. No one person should ever have to experience it.
He now has a GPS, we bought window and door alarms. There are no more gaps while playing and waiting for the bus.
Don't ever let other peoples judgments get you down. You do what is right by your child. You be the best over protective momma or papa bear there is. All it takes are seconds, and your life will be forever changed.
As a little background for anyone new reading this, Lukas is 5, on the spectrum and is nonverbal. He has no sense of danger, and often finds mischief. (very much a small nutshell version)
Everyone has fears. Some people learn to conquer theirs, others let it define their lives. To outside people, fears can seem small and insignificant but to you, it is never small.
I have multiple fears, some more typical than the rest....spiders, bees, pitch black.
But what about those bigger fears, the not so typical ones, the ones we try to hide? What happens when those become true?
I cannot truly put into word how it feels when your worst fears come true; but for the sake of getting this important message out there, I will do my best.
Almost every day there is a new story on my Facebook news feed of another Autistic child gone missing. People on the outside are often quick to judge the parents or caregivers. I've heard all types of bashing; if you were paying attention that wouldn't have happened, do you even care for your child, why would you let this happen? The list goes on.
But yet those same people, and I have heard this personally more times than I can count...
Let him be, don't hover, let him run, let him be a kid, let him explore.
No....I cannot do these things...and here is why
To us on the corner of Autism Ave, we know that sometimes our kids...they just have this will and you know the saying...when there is a will, there is a way. Believe me when I say, it can happen extremely fast! Thankfully my story has a happy ending but so many others do not. Here is the story of how my worst fear came true, how I lost my son for almost an hour...
Another typical day of trying to wrangle him to school. Him not wanting to put on clothes, throwing a fit at the sight of his book bag, carrying his almost 60 lbs butt out the door.
It has finally been warming up, so we decided to walk/run up and down the sidewalk while we wait for the bus (waiting and patience isn't exactly his gig). We were having a blast, it was a little windy and he loves to feel the wind blow in his hair. He ran back towards the house, I was behind him by maybe 15-20 seconds if that. Thinking, where could he possibly go? He often stops around the corner and crouches down and giggles when I come around and jump out.
What happens when you turn that corner and there is no boy? You look at the porch and there is no boy? You look at the other side of the house and there is no boy?
True panic sets in. Your heart immediately goes into your throat and it feels like it is beating harder and faster than a normal heart could bare.
A million things start to go through your mind at once. Where could he have gone? Was the front door open? The back gate to the neighbors is open, did he run back there?
You start to scream his name in hopes of him popping out and finding you. You start to run and look and get more worked up as each second passes that he isn't there. You start to realize that he can't talk and won't say "over here momma, gotcha!"
As you are running and yelling and looking, more thoughts run through your head. Was he taken? Did I look to fast here? Should I try to look into the house? If I look into the house and he is outside, will he get farther away? Where do I go? What do I do? You scream...and run...and look more.
After what felt like a lifetime (maybe 5 minutes) I call the police. During this time the school secretary who lives two houses down and was leaving to go back to school from her lunch is now helping look for him. The police keep me on the phone, beg me not to hang up as I am losing my mind, my ability to think clearly. I get impatient, I want to run and scream and not talk on the phone. I search places over and over again. I scream his name a thousand times.
Police and fire rescue show up in about 5-10 minutes (I have no grasp on the time). I'm calling my mom and his dad to let them know. I am getting asked question after question when all I want to do is run and find him.
They ask me what he is wearing, what he looks like, if he has any hiding places he likes to go.
I tell them he likes to hide under things and look for water.
The thought of water almost brings me to my knees. What if he finds a pool or water? What if he drowns? No....no I can't think about that.
What if he makes it to the busy road? No surely someone will see him by then right? He can't make it there! He won't!
Your heart feels like it is going to literally burst out of your chest. There is so much anguish and anxiety, you don't even know how you are still upright. You just keep thinking, you have to find him...now!
More people start showing up, people with dogs, people from the neighborhood, more police. I keep running through all the back yards. It feels like hours instead of minutes have passed. Multiple cops search my home, with me and without.
I start going thru the neighbors back yard again and there is a gentleman with a dog. Whether it was god or mothers intuition, I ask him to see if the sliding glass door is unlocked (he is obsessed with ours). My neighbors aren't home so he isn't sure if he should. I take off up the street. More screaming and looking. Again it feels like forever, the anguish is starting to take full control and I finally just drop to my knees. I just sit and pull my hair and scream his name over and over and over again. I see a blue truck coming down the road, he stops and says are you mom? Oh God! This could either be very good or the worst news of my life. I say yes...in movies there dramatize things...makes things look slower than normal....but it does happen. Its like everything stopped for a few moments while I waited to hear what this man had to say...tick tock tick tock.
"They've found him! Get in and I can take you to him."
They found him? Really? Is he ok? Where was he? How far did he get? Oh my God he is alive! I will see my boy again!
We pull into my drive way but there is no Lukas. Where is he?! You said they found him! Where is he?!
They will bring him to you any moment.
Why can't I just go to him? Where is he?
Then he rounds the corner with officers and the man with the dog (I think). I run...I hug...I cry...
They try to tell me to not upset him, to not scare him....
My first reaction was the smack the living shit out of the however said that but I know otherwise. They were right. He was safe and that's all that matter. I didn't need to traumatize him just because he eloped and traumatized me.
They said he went through the neighbors sliding glass door and was found playing with the grandkids toys in the living room. He was content and had a smile on his face.
He had never been to our neighbors house before. He had never even been in their back yard. But this day, when the neighbors gate had been slightly opened, and the back door unlocked...I lost my son within 20 ish seconds for almost an hour.
I hugged him and smiled and made him look me in the face and told him I loved him. I called him a little shit for scaring mommy like that. I tried to explain why this wasn't good behavior.
For hours I did nothing but cry and shake. There was too much adrenaline and anxiety and all kind of emotions I have never experienced inside me. I had to remind myself over and over that he was safe and unharmed. It was still so hard not to think of what could have been. I was the lucky mom who got her child back. So many others didn't get this happy news.
Elopement is a very real risk. It is truly terrifying. No one person should ever have to experience it.
He now has a GPS, we bought window and door alarms. There are no more gaps while playing and waiting for the bus.
Don't ever let other peoples judgments get you down. You do what is right by your child. You be the best over protective momma or papa bear there is. All it takes are seconds, and your life will be forever changed.
Thursday, September 5, 2013
Point of No Return
As I get home, get my kids off the bus and try to unwind I open Facebook. My news feed is over flowing with new posts of another tragedy in our community. A fellow blogger tried to take her teenage daughter with autism life.
That is a point of no return.
I do not condone any behavior like this, I do not agree with this behavior and I do believe there is always more options but....
Everyone has their point don't they?
We as a community and individuals have such a full plate. Everyone has a breaking point, some cross the point of no return.
I can think of a 100 different options on how to handle a situation without ever doing harm to my child but I CAN relate to the stress.
The daily struggles and the stress...
It is unimaginable to people who don't experience our life.
Everyday is a struggle.
Fighting insurance companies
Fighting teachers
Fighting school systems
Fighting Medicaid
Fighting with our child(ren)
Fighting with ourselves and our own mental stability
The list can go on and on
What hurts me is, when 'outsiders' read this story about this woman there will be so many misconceptions and rumors and trash talk.
Again not even slightly agreeing with what she did but I CAN relate to the Autism life and the everyday struggles.
It is overwhelming and exhausting. Sometimes I feel it is too much to bare. Then I think of my precious little boy who didn't ask for any of this. It is not his fault and I am his mother so I must do everything in my power to give him what he deserves.
Have I wanted to throw in the towel? Many times.
Have I just wanted to stop making calls, pleading with this person or that for something my son needs? Yes.
Have I wanted to stop doing number crunch after number crunch to see how we can afford bills and therapies at the same time? Everyday
Have I wanted to run away? There has been a few times.
Have I lost my mind? You betcha, few times.
Have I broke down? More than I like to admit.
That is all part of the process though. You get out what you need to. Scream, throw, take a drive, talk to someone, take a nap....anything but harm your child.
As I sit here and stare at my screen I am not sure what it is I need to say, I just have an urge to type. I am not sure how to end this because I am so saddened by the events that took place. There are so many thoughts and feelings that go along with an event such as this.
My prayers are with the family, the this girl who didn't ask for this. For her to find peace and be able to cope with the events that transpired.
That is a point of no return.
I do not condone any behavior like this, I do not agree with this behavior and I do believe there is always more options but....
Everyone has their point don't they?
We as a community and individuals have such a full plate. Everyone has a breaking point, some cross the point of no return.
I can think of a 100 different options on how to handle a situation without ever doing harm to my child but I CAN relate to the stress.
The daily struggles and the stress...
It is unimaginable to people who don't experience our life.
Everyday is a struggle.
Fighting insurance companies
Fighting teachers
Fighting school systems
Fighting Medicaid
Fighting with our child(ren)
Fighting with ourselves and our own mental stability
The list can go on and on
What hurts me is, when 'outsiders' read this story about this woman there will be so many misconceptions and rumors and trash talk.
Again not even slightly agreeing with what she did but I CAN relate to the Autism life and the everyday struggles.
It is overwhelming and exhausting. Sometimes I feel it is too much to bare. Then I think of my precious little boy who didn't ask for any of this. It is not his fault and I am his mother so I must do everything in my power to give him what he deserves.
Have I wanted to throw in the towel? Many times.
Have I just wanted to stop making calls, pleading with this person or that for something my son needs? Yes.
Have I wanted to stop doing number crunch after number crunch to see how we can afford bills and therapies at the same time? Everyday
Have I wanted to run away? There has been a few times.
Have I lost my mind? You betcha, few times.
Have I broke down? More than I like to admit.
That is all part of the process though. You get out what you need to. Scream, throw, take a drive, talk to someone, take a nap....anything but harm your child.
As I sit here and stare at my screen I am not sure what it is I need to say, I just have an urge to type. I am not sure how to end this because I am so saddened by the events that took place. There are so many thoughts and feelings that go along with an event such as this.
My prayers are with the family, the this girl who didn't ask for this. For her to find peace and be able to cope with the events that transpired.
Wednesday, August 7, 2013
Not OK
This is not ok.....
to find on your kids arm after he gets home from being at school.
It is not ok for someone to harm your child. Especially someone who is supposed to teach and care for your child.
I know they aren't deep bruises but it was enough to leave a mark going on 3 days now. Lets start at the beginning....
I come home from work and first thing I do is hug and kiss my kiddos. Luke misses me a lot when I am gone so I am usually his jungle gym for awhile once I am home. He is on top of my lap when I notice something on his arm. I take his arm and my eyes about bug out of my head. I the immediately start scanning over him, there are more on his other arm. I am in shock....numb...I can't comprehend what I am seeing. He is being super destructive, throwing things, trashing the house (not in a violent way but you get my drift).
I ask others for advice because to me they look like grab marks, but hey maybe I am paranoid (those pictures don't give the marks justice).
There is an out cry about what is in the pictures. Everyone sees it too. I am not losing my mind (relieved in a way).
I ask Roger, my husband what they were from. He said he didn't know. I asked if there was anything at ESY (his extended school year). He said, 'they told me they had a hard time getting him to come in but that's it. They want us to take him directly to the room from now on.'
No incident report in his bag.....
I am lost in my own thoughts and emotions. I can't feel what I should be. I am confused. I am logically trying to work things out in my head. I will ask tomorrow. I NEVER drop him off because of his separation anxiety but this needed to be brought to light.
I go in there very calmly and ask them for a moment, that I found marks all over his arms. The teacher said 'we had a very hard time getting him into the building and to the classroom. He wanted to just lay down and was screaming. We had to drag him for about a 5 minute time period to the classroom.'
You drug him to the room....
Why wasn't I called or given an incident report?
'We did write an incident report, you get that packet of all of them on Friday (his last day)'
*In my mind* A packet?!!? PACKET?! I haven't really been told of any issues?!
She then starts the I am sorry, we had no choice, we had two other children with us.
Then she says....'What was I supposed to do, go find someone, a maintenance man to help? We had two other children with us.'
Yea...anything would be better than dragging my 3 year old for over 5 minutes. I am keeping my cool. I honestly don't believe they did it in a malicious way but they handled it ALL WRONG.
The rest of the conversation was a lot of I'm sorry and what was I supposed to do.
I left. I called his teacher (his actual teacher). I love her, she would never in a million years treat Lukas this way. She loves him. I told her about the conversation with the ESY teacher. She was so upset, right along with me. See, I texted her the pictures right away on Monday, she had been in the loop through the whole thing. She apologizes a hundred times...she is amazing. I don't need her apologizes, I just need her support which I have been getting. We end the conversation with me not knowing what I am going to do yet.
I call the doctors office and schedule an appointment. I was advised to do this my a very dear friend, Debra. We get him into the doctor, she writes the report and checks him out. He is ok, but he is nonverbal...how do I know about emotional damage. Just add one more thing to break my heart...
I wake up today, go to work. I have decided to contact the school board. I text his teacher and ask for advice. She replies, I was too upset about Lukas, I have already reported it to the principal. The principal would like a meeting with you.
(Like I said hell of a teacher, amazing woman, and she truly LOVES Lukas)
She gives me the principals number. I call and leave a message, I knew she was out of the office for the day. I get a call back from the secretary with a tentative meeting on Friday. We WILL be HEARD.
Here comes the next pile of bullshit....ready for this? I for one was not...
I call my husband and ask him how Luke's day was. He replies 'fucking horrible'.
What!?!? Why??
'They told me he had a bad day, he wouldn't do anything. He hid under the table for about the whole 3 hours. They tried to take him for a walk to the bathroom and he just crawled back into the room and hid again. She told me that this isn't working for him and they can't teach him. He won't do anything, so we don't have to bring him back if we don't want too'.
ARE YOU KIDDING ME!!!!!!!!!!!!!!!!!!!!!!!!!!
You are just giving up on my child?!?! Are you even slightly equipped to teach a child on the spectrum?!!? I burst into tears. EVERYTHING I have been fighting for 3 days bursts out.
They are basically telling us to not come back. Unbelievable.
This is NOT OK!!!!
I tell his teacher the new development. She is speaking with the principle tomorrow. I am not taking him back, not because they don't want us too but for the safety of my child, physically and emotionally. My child does not ever hide under things. You are either lying or he was scared. He doesn't know or understand social cues. He doesn't just change his whole personality whenever he feels fits. We have had him in a program all summer with only one incident and we were notified as well as given a formal written report. Don't give me this line of shit hunny, cause this momma isn't buying.
We will get answers, we will have a meeting. I am not out for blood but I cannot cage momma bear anymore. I will be very polite to the principle, she is willing to listen but so help me if those 2 woman come near my child or degrade him ever again...that's a whole other story.
I am hopeful policies will be changed. Situations like this will be handled differently. No child will be put through that again because...it is NOT OK.
I am not ok....
to find on your kids arm after he gets home from being at school.
It is not ok for someone to harm your child. Especially someone who is supposed to teach and care for your child.
I know they aren't deep bruises but it was enough to leave a mark going on 3 days now. Lets start at the beginning....
I come home from work and first thing I do is hug and kiss my kiddos. Luke misses me a lot when I am gone so I am usually his jungle gym for awhile once I am home. He is on top of my lap when I notice something on his arm. I take his arm and my eyes about bug out of my head. I the immediately start scanning over him, there are more on his other arm. I am in shock....numb...I can't comprehend what I am seeing. He is being super destructive, throwing things, trashing the house (not in a violent way but you get my drift).
I ask others for advice because to me they look like grab marks, but hey maybe I am paranoid (those pictures don't give the marks justice).
There is an out cry about what is in the pictures. Everyone sees it too. I am not losing my mind (relieved in a way).
I ask Roger, my husband what they were from. He said he didn't know. I asked if there was anything at ESY (his extended school year). He said, 'they told me they had a hard time getting him to come in but that's it. They want us to take him directly to the room from now on.'
No incident report in his bag.....
I am lost in my own thoughts and emotions. I can't feel what I should be. I am confused. I am logically trying to work things out in my head. I will ask tomorrow. I NEVER drop him off because of his separation anxiety but this needed to be brought to light.
I go in there very calmly and ask them for a moment, that I found marks all over his arms. The teacher said 'we had a very hard time getting him into the building and to the classroom. He wanted to just lay down and was screaming. We had to drag him for about a 5 minute time period to the classroom.'
You drug him to the room....
Why wasn't I called or given an incident report?
'We did write an incident report, you get that packet of all of them on Friday (his last day)'
*In my mind* A packet?!!? PACKET?! I haven't really been told of any issues?!
She then starts the I am sorry, we had no choice, we had two other children with us.
Then she says....'What was I supposed to do, go find someone, a maintenance man to help? We had two other children with us.'
Yea...anything would be better than dragging my 3 year old for over 5 minutes. I am keeping my cool. I honestly don't believe they did it in a malicious way but they handled it ALL WRONG.
The rest of the conversation was a lot of I'm sorry and what was I supposed to do.
I left. I called his teacher (his actual teacher). I love her, she would never in a million years treat Lukas this way. She loves him. I told her about the conversation with the ESY teacher. She was so upset, right along with me. See, I texted her the pictures right away on Monday, she had been in the loop through the whole thing. She apologizes a hundred times...she is amazing. I don't need her apologizes, I just need her support which I have been getting. We end the conversation with me not knowing what I am going to do yet.
I call the doctors office and schedule an appointment. I was advised to do this my a very dear friend, Debra. We get him into the doctor, she writes the report and checks him out. He is ok, but he is nonverbal...how do I know about emotional damage. Just add one more thing to break my heart...
I wake up today, go to work. I have decided to contact the school board. I text his teacher and ask for advice. She replies, I was too upset about Lukas, I have already reported it to the principal. The principal would like a meeting with you.
(Like I said hell of a teacher, amazing woman, and she truly LOVES Lukas)
She gives me the principals number. I call and leave a message, I knew she was out of the office for the day. I get a call back from the secretary with a tentative meeting on Friday. We WILL be HEARD.
Here comes the next pile of bullshit....ready for this? I for one was not...
I call my husband and ask him how Luke's day was. He replies 'fucking horrible'.
What!?!? Why??
'They told me he had a bad day, he wouldn't do anything. He hid under the table for about the whole 3 hours. They tried to take him for a walk to the bathroom and he just crawled back into the room and hid again. She told me that this isn't working for him and they can't teach him. He won't do anything, so we don't have to bring him back if we don't want too'.
ARE YOU KIDDING ME!!!!!!!!!!!!!!!!!!!!!!!!!!
You are just giving up on my child?!?! Are you even slightly equipped to teach a child on the spectrum?!!? I burst into tears. EVERYTHING I have been fighting for 3 days bursts out.
They are basically telling us to not come back. Unbelievable.
This is NOT OK!!!!
I tell his teacher the new development. She is speaking with the principle tomorrow. I am not taking him back, not because they don't want us too but for the safety of my child, physically and emotionally. My child does not ever hide under things. You are either lying or he was scared. He doesn't know or understand social cues. He doesn't just change his whole personality whenever he feels fits. We have had him in a program all summer with only one incident and we were notified as well as given a formal written report. Don't give me this line of shit hunny, cause this momma isn't buying.
We will get answers, we will have a meeting. I am not out for blood but I cannot cage momma bear anymore. I will be very polite to the principle, she is willing to listen but so help me if those 2 woman come near my child or degrade him ever again...that's a whole other story.
I am hopeful policies will be changed. Situations like this will be handled differently. No child will be put through that again because...it is NOT OK.
I am not ok....
Wednesday, June 12, 2013
No Warrior Here
I often get asked how do I do it? I must be supermom or a warrior. That I am something special....
Nothing special here. I am no Autism Warrior Mom, no super human powers (unless running on zero sleep is super human then yes, yes I am).
I am nothing special.
I am a mother, a daughter, a cousin, a niece, sister, aunt.
This implies no special ability.
I get 'I am soooo sorry! I didn't know' 'That must be soo hard' 'You are so strong'
I will give them that, I am strong...strong as hell for my son. Everyone has their point though.
But isn't every mother? This is my child! It wasn't his choice to have Autism! This is the hand we were dealt. So deal with it we do.
Do I fight for him? Of course!
Do I raise awareness? I try my best.
Do I educate? All the time.
Do I advocate? You bet your ass I do.
But wouldn't you?
I love my child, this was instilled in me before I saw his first heart beat on the monitor, before I felt him move inside me for the first time, before I heard his first cry and saw his precious face.
I would do anything for him, Autism or not. He is my boy, my special boy! He would be special even if Autism didn't happen. I would look at him the same way I do now. Marvel at his brilliance, be in awe of his smile, be blinded when his eyes light up when he understands something.
My mother and father loved me, they brought me up right. They taught me what matters most in this world.
There is no warrior in me, I do what I must for my children. No super powers to handle this situation, I just love my kids.
I breakdown, scream, cry, get frustrated, lose my cool, hide in a bathroom or a bedroom when enough is enough. Want to go off and get rip roaring drunk on occasion. Everyone has their point. I sometimes think mine is actually quite shorter than others because of the endless stress. I often go crazy and unless this is now some super human power I am not aware of then...shit I am screwed!
Don't feel bad for us. Don't say you are sorry because my son is who he is.
Love my son, embrace him into your life. Let him change you and your perception. Advocate for him. Spread awareness for him. Educate people on your experiences, not just for my son but for all of us.
We are a family, who all struggle on this journey. We do what we must, this is our lives. We live just like you, maybe in a more stimmy, loud place full of toys stacked, messes everywhere because frankly who doesn't think that cup of juice looks cooler on the floor in a puddle! The same 30 seconds of YouTube going off over and over and over and over again.. We are all different but the same. We all manage our lives to fit our schedules, our needs and our wants. We get our children what they need. We help them grow, learn and love.
And now I have to go wrangle my wild child, make sure there isn't some funky finger paint on my walls, or puddles on the floor!
Over and out!
Nothing special here. I am no Autism Warrior Mom, no super human powers (unless running on zero sleep is super human then yes, yes I am).
I am nothing special.
I am a mother, a daughter, a cousin, a niece, sister, aunt.
This implies no special ability.
I get 'I am soooo sorry! I didn't know' 'That must be soo hard' 'You are so strong'
I will give them that, I am strong...strong as hell for my son. Everyone has their point though.
But isn't every mother? This is my child! It wasn't his choice to have Autism! This is the hand we were dealt. So deal with it we do.
Do I fight for him? Of course!
Do I raise awareness? I try my best.
Do I educate? All the time.
Do I advocate? You bet your ass I do.
But wouldn't you?
I love my child, this was instilled in me before I saw his first heart beat on the monitor, before I felt him move inside me for the first time, before I heard his first cry and saw his precious face.
I would do anything for him, Autism or not. He is my boy, my special boy! He would be special even if Autism didn't happen. I would look at him the same way I do now. Marvel at his brilliance, be in awe of his smile, be blinded when his eyes light up when he understands something.
My mother and father loved me, they brought me up right. They taught me what matters most in this world.
There is no warrior in me, I do what I must for my children. No super powers to handle this situation, I just love my kids.
I breakdown, scream, cry, get frustrated, lose my cool, hide in a bathroom or a bedroom when enough is enough. Want to go off and get rip roaring drunk on occasion. Everyone has their point. I sometimes think mine is actually quite shorter than others because of the endless stress. I often go crazy and unless this is now some super human power I am not aware of then...shit I am screwed!
Don't feel bad for us. Don't say you are sorry because my son is who he is.
Love my son, embrace him into your life. Let him change you and your perception. Advocate for him. Spread awareness for him. Educate people on your experiences, not just for my son but for all of us.
We are a family, who all struggle on this journey. We do what we must, this is our lives. We live just like you, maybe in a more stimmy, loud place full of toys stacked, messes everywhere because frankly who doesn't think that cup of juice looks cooler on the floor in a puddle! The same 30 seconds of YouTube going off over and over and over and over again.. We are all different but the same. We all manage our lives to fit our schedules, our needs and our wants. We get our children what they need. We help them grow, learn and love.
And now I have to go wrangle my wild child, make sure there isn't some funky finger paint on my walls, or puddles on the floor!
Over and out!
Thursday, April 25, 2013
Clash of the Titans
As most of you know I have a 5 year old NT daughter who is full of life. She is loud, silly, loving, smart and full of all kinds of energy. Every day it is a struggle to balance needs, wants and jealousy. Little miss doesn't understand yet about her brother, not fully anyway. So trying to explain things to her when he goes off and his aggression is towards her is challenging. Showing affection to her enough with out spoiling to overcompensate for all the needs of Little man are over whelming.
Little miss gets very jealous of Little man. They used to get along so well, play together, giggle together, smile, run, you name it they were doing it. That is until the changes happened in Little Man. So I can totally see where she doesn't grasp what has happened with her brother. We were clueless for awhile too.
Every day it is a clash of the titans. Trying to get him to do this or that task without Little miss interfering but not hurting her feelings (she just wants to be a part of it all, I can understand that). If she doesn't listen and sets him off, it is automatic aggression. They battle every day. My will power falters.
If we give in to her every time doesn't that make her spoiled? But wait..if we don't show her the extra attention to show her we love her just as much, are we sending the wrong message?
Her whole being sets him off. He will scream and push her away. If she doesn't stop it goes to biting, hitting and kicking. Although pushing away should be fair warning enough..little kids sometimes don't pick up on the signs. He is more frustrated because he cannot talk. He has no verbal communication at all. I am sure that would set me off in a world of misery alone. How my strong little boy copes every day is beyond me. He is so strong.
I am a ref most days. Keeping them apart, her wanting to play and interact, him wanting solitude and his ipad in peace. What is a mom to do? I think we have been ok so far but some days I feel like I am treading water, my mouth barely above the surface.
We have talked to her to her many times about her brother. I am not sure what sinks in or not. I am looking into a book called "My Brother Charlie" We had her become a peer student for kiddos on the spectrum this year, I was hoping she would see others like her brother and understand a little better. I think it has helped some but not nearly what I was hoping. I think what we need most is time and patience. Understanding, acceptance and awareness are spreading...starting in my very own home =)
Well the house is stirring, I better go get my ref shirt on, my whistle and prepare for battle =)
Over and out for now
Little mans momma
Little miss gets very jealous of Little man. They used to get along so well, play together, giggle together, smile, run, you name it they were doing it. That is until the changes happened in Little Man. So I can totally see where she doesn't grasp what has happened with her brother. We were clueless for awhile too.
Every day it is a clash of the titans. Trying to get him to do this or that task without Little miss interfering but not hurting her feelings (she just wants to be a part of it all, I can understand that). If she doesn't listen and sets him off, it is automatic aggression. They battle every day. My will power falters.
If we give in to her every time doesn't that make her spoiled? But wait..if we don't show her the extra attention to show her we love her just as much, are we sending the wrong message?
Her whole being sets him off. He will scream and push her away. If she doesn't stop it goes to biting, hitting and kicking. Although pushing away should be fair warning enough..little kids sometimes don't pick up on the signs. He is more frustrated because he cannot talk. He has no verbal communication at all. I am sure that would set me off in a world of misery alone. How my strong little boy copes every day is beyond me. He is so strong.
I am a ref most days. Keeping them apart, her wanting to play and interact, him wanting solitude and his ipad in peace. What is a mom to do? I think we have been ok so far but some days I feel like I am treading water, my mouth barely above the surface.
We have talked to her to her many times about her brother. I am not sure what sinks in or not. I am looking into a book called "My Brother Charlie" We had her become a peer student for kiddos on the spectrum this year, I was hoping she would see others like her brother and understand a little better. I think it has helped some but not nearly what I was hoping. I think what we need most is time and patience. Understanding, acceptance and awareness are spreading...starting in my very own home =)
Well the house is stirring, I better go get my ref shirt on, my whistle and prepare for battle =)
Over and out for now
Little mans momma
Tuesday, April 23, 2013
How and When We Thought Something Was Happening to Our Son
I have had a lot of people joining my web page on facebook lately. I have also had a lot of questions from new parents who think their child might have Autism. I figured I would write a whole blog about when and how we knew something was going on with our little guy.
If you haven't been following along for the whole time I will kinda start from the beginning. If you have been, well some of this might be repeat but I want to get our story out there for everyone. Now the hard part...to collect my thoughts and see where to start! Bare with me, this is going to be a long winded one I am sure.
Little man was born in August of 2009, he was born on time and very healthy. He would never sleep but isn't that any new born? Every check up we went to everything was perfect. He was hitting all his milestones on time, even advanced in some areas. He was babbling, walking, playing, flirting, most of all enjoying life. Around 15-18 months things went from wonderful to unknown...we were just left shaking our heads wondering what is going on.
Things were so good with him previously that I honestly thought he was being stubborn. I knew all children advance at different levels and I knew to not compare him to my older daughter. So for awhile we wrote it off as him being a boy and being stubborn. This is what started to change...
He was saying Momma, Dadda, Ball no problem and then it started to turn into a stutter. He was really straining to get words out. I remember sitting on the couch talking with my mom on the phone and asking her if he could develop a stutter after being able to talk just fine. We decided he was just being goofy. He has always had a goofy personality. Well the stutters turned into a humming type sound, like he couldn't even form the words anymore. Then...it was silence...nothing..no babble, no words...nothing.
During this time he stopped playing with his toys over time. Anything that would make noise sent him into a screaming fit. He didn't want to interact with anything anymore. His sister made his skin crawl, he could no longer even be by her. All he wanted to do was rock in the recliner and watch movies.
If anyone came over he would not notice them and if he did by chance...you better watch out. He was screaming, flailing and just plain having a fit. He didn't flirt anymore, his smiles were nonexistent and he just seemed miserable.
Taking him places was a nightmare. To even take him outside he would go completely rigid, not move and just scream and scream for however long we had him out. There was no enjoying family gatherings, we couldn't even play outside come spring and summer because every noise set him off. Even the grass was too much for him to handle.
He also went form eating everything and I mean everything to barely any foods. He became so picky that we was eating breaded chicken only at one point. We used to call him our garbage disposal because he would just finish every ones food. We couldn't get him to try or eat a damn thing...
At his 18 month check up his Doc asked if I had any concerns. I mentioned what was happening and she told me lets wait 6 months until his 2 year check up and see how things are going. If he still have concerns then we can go from there.
July 4th, 2011....
We took him over to my moms for the big Fourth of July parade. There was a huge parade, fire works, fair..you name it! I was excited beyond belief. Everything was okay until the parade started. He went into the worst fit I had seen him go into. He was so upset by the commotion that he even started vomiting all over me. I had to carry him about a mile back to my moms house so he would calm down. I didn't know it at the time but after this happened my mom started doing research. I was still clueless as to what was causes any of it.
During this time I was also going to school full time at night, we were planning our formal wedding for the family since we only did a justice of the peace a few years earlier. My mom was worried to tell me about her thoughts, I was clueless and I was just waiting anxiously for his 2 year check up.
August 22, 2011....
This was the exact date of his 2 year well child check. HE was freaking out of course. I was desperately wanting to get it over with. We finally got into the room and his Doc asked what I thought and how things were going. I started down my list, asking if it was normal? What I should be doing and her thoughts on it all. She left the room to go get a questionnaire. She had me answer it and what that questionnaire was was the MCHAT, the prescreeening indicator for Autism.
She didn't tell me what it was until she told me the results and it was all over. I think my mouth hit the ground. I, like most people who aren't affected by Autism thought of rain man or severely autistic people. I didn't truly know what it was. I was confused, hurt, sad, numb, angry... I started to cry. I was in hysterics before I knew it. I asked why? How? What is it? Are you sure? She said she didn't know for sure that we had to be referred to a developmental neurologist doctor at Akron Children's hospital for more testing. Come to find out there was a hefting waiting time.
Little man hit all the critical markers on the MCHAT and almost all the other indicators. Within four months he was diagnosed with Autism. Our life has never been the same. Some days are awful, some days are miracles-which balance out the bad. We struggle but it is worth it.
Here is a list in a nut shell of the signs of Autism my son has...
No social skills
No eye contact
Sensory issues -smell, sound, light, texture, craves deep pressure input, etc
Picky eater
He flaps his arms
He rocks back and forth
He walks on his tippy toes
Change is not ok with him and will invoke a meltdown
He doesn't notice other kids
He is developmentally behind
He cannot talk
His communication skills are severely behind
I am sure there are things I am missing but when you look up "classic autism" he pretty much fits the bill to a t.
I hope this helps the people who had questions. If it wasn't for the people I met through the Autism community I don't know where I would be today. They helped me through my darkest of times and helped me understand, one person in particular is Deb Pierce Bellare. She is an amazing woman with an autistic son who is an amazing photographer. Without her I would still be in my own little whole in the wall. God bless you all. If you ever need me..I will be your rock.
If you haven't been following along for the whole time I will kinda start from the beginning. If you have been, well some of this might be repeat but I want to get our story out there for everyone. Now the hard part...to collect my thoughts and see where to start! Bare with me, this is going to be a long winded one I am sure.
Little man was born in August of 2009, he was born on time and very healthy. He would never sleep but isn't that any new born? Every check up we went to everything was perfect. He was hitting all his milestones on time, even advanced in some areas. He was babbling, walking, playing, flirting, most of all enjoying life. Around 15-18 months things went from wonderful to unknown...we were just left shaking our heads wondering what is going on.
Things were so good with him previously that I honestly thought he was being stubborn. I knew all children advance at different levels and I knew to not compare him to my older daughter. So for awhile we wrote it off as him being a boy and being stubborn. This is what started to change...
He was saying Momma, Dadda, Ball no problem and then it started to turn into a stutter. He was really straining to get words out. I remember sitting on the couch talking with my mom on the phone and asking her if he could develop a stutter after being able to talk just fine. We decided he was just being goofy. He has always had a goofy personality. Well the stutters turned into a humming type sound, like he couldn't even form the words anymore. Then...it was silence...nothing..no babble, no words...nothing.
During this time he stopped playing with his toys over time. Anything that would make noise sent him into a screaming fit. He didn't want to interact with anything anymore. His sister made his skin crawl, he could no longer even be by her. All he wanted to do was rock in the recliner and watch movies.
If anyone came over he would not notice them and if he did by chance...you better watch out. He was screaming, flailing and just plain having a fit. He didn't flirt anymore, his smiles were nonexistent and he just seemed miserable.
Taking him places was a nightmare. To even take him outside he would go completely rigid, not move and just scream and scream for however long we had him out. There was no enjoying family gatherings, we couldn't even play outside come spring and summer because every noise set him off. Even the grass was too much for him to handle.
He also went form eating everything and I mean everything to barely any foods. He became so picky that we was eating breaded chicken only at one point. We used to call him our garbage disposal because he would just finish every ones food. We couldn't get him to try or eat a damn thing...
At his 18 month check up his Doc asked if I had any concerns. I mentioned what was happening and she told me lets wait 6 months until his 2 year check up and see how things are going. If he still have concerns then we can go from there.
July 4th, 2011....
We took him over to my moms for the big Fourth of July parade. There was a huge parade, fire works, fair..you name it! I was excited beyond belief. Everything was okay until the parade started. He went into the worst fit I had seen him go into. He was so upset by the commotion that he even started vomiting all over me. I had to carry him about a mile back to my moms house so he would calm down. I didn't know it at the time but after this happened my mom started doing research. I was still clueless as to what was causes any of it.
During this time I was also going to school full time at night, we were planning our formal wedding for the family since we only did a justice of the peace a few years earlier. My mom was worried to tell me about her thoughts, I was clueless and I was just waiting anxiously for his 2 year check up.
August 22, 2011....
This was the exact date of his 2 year well child check. HE was freaking out of course. I was desperately wanting to get it over with. We finally got into the room and his Doc asked what I thought and how things were going. I started down my list, asking if it was normal? What I should be doing and her thoughts on it all. She left the room to go get a questionnaire. She had me answer it and what that questionnaire was was the MCHAT, the prescreeening indicator for Autism.
She didn't tell me what it was until she told me the results and it was all over. I think my mouth hit the ground. I, like most people who aren't affected by Autism thought of rain man or severely autistic people. I didn't truly know what it was. I was confused, hurt, sad, numb, angry... I started to cry. I was in hysterics before I knew it. I asked why? How? What is it? Are you sure? She said she didn't know for sure that we had to be referred to a developmental neurologist doctor at Akron Children's hospital for more testing. Come to find out there was a hefting waiting time.
Little man hit all the critical markers on the MCHAT and almost all the other indicators. Within four months he was diagnosed with Autism. Our life has never been the same. Some days are awful, some days are miracles-which balance out the bad. We struggle but it is worth it.
Here is a list in a nut shell of the signs of Autism my son has...
No social skills
No eye contact
Sensory issues -smell, sound, light, texture, craves deep pressure input, etc
Picky eater
He flaps his arms
He rocks back and forth
He walks on his tippy toes
Change is not ok with him and will invoke a meltdown
He doesn't notice other kids
He is developmentally behind
He cannot talk
His communication skills are severely behind
I am sure there are things I am missing but when you look up "classic autism" he pretty much fits the bill to a t.
I hope this helps the people who had questions. If it wasn't for the people I met through the Autism community I don't know where I would be today. They helped me through my darkest of times and helped me understand, one person in particular is Deb Pierce Bellare. She is an amazing woman with an autistic son who is an amazing photographer. Without her I would still be in my own little whole in the wall. God bless you all. If you ever need me..I will be your rock.
Wednesday, January 16, 2013
Sniffles and Babbles
My little Luke is nonverbal...for the most part. If you have been following along with our journey you know what I am referring to. If you are new to this, please check out my story but for now, in a nutshell he gets very brief and limited spurts of speech. I call them his 'up phases'.
I know there is a lot of talk about Autism and fevers. How when our kids are sick they seem to be more 'typical'. I am a believer in this. I have seen it when he is sick, he acts more "normal". Although when he is sick it is a huge pain in the a$$ because he cannot talk and tell me what is wrong. But that is a horse of another color.
Luke has been getting sick off and on since Thanksgiving. It seems there are a couple different Flu's running around on top of a couple different colds. Once he is over one of them, within a few days to a week we all seem to catch the next one.
Yesterday Luke woke up with the sniffles. Sometimes its runny, sometimes its stuffy. Either way I know he isn't feeling well. He is being a trooper so far and very minimal complaints. What has been happening other than the cold is amazing.
Whether it is pure happenstance or linked I am sure I will never know but yesterday and today he has been playing and babbling. I almost got 'Momma' out of him today. He sat in the living room and played with these plastic toys you link together for over 30 minutes. I was completely blissed out.
His babbling and noises are amazing. It is music to my ears. I wish he would let me catch it on video but the stinker knows when I grab my phone and start to record he just hushes right up.
So while the sniffles truly suck and I know it bothers him to have them, I absolutely love the babbles. There is so much about Autism that is a mystery. I think the missing puzzle piece sums it up pretty well. I won't ever know if when he is sick and acting more 'typical' if it related but I believe it is. There is so much that I don't know. And if I will ever truly know the answers too.
But for now I will enjoy my sniffles and babbles because they are my light in the darkness. The light I so desperately run to time and time again. This light will fade out soon, as it always does but for now it is shining bright. A beacon of hope. For if we don't have faith and hope we are lost. I will never let him get lost. I will always lead us back to the light because it is what I do. I love him dearly. As long as the light never goes all the way out there is always a dim reminder of what once was and hope for a brighter tomorrow.
I know there is a lot of talk about Autism and fevers. How when our kids are sick they seem to be more 'typical'. I am a believer in this. I have seen it when he is sick, he acts more "normal". Although when he is sick it is a huge pain in the a$$ because he cannot talk and tell me what is wrong. But that is a horse of another color.
Luke has been getting sick off and on since Thanksgiving. It seems there are a couple different Flu's running around on top of a couple different colds. Once he is over one of them, within a few days to a week we all seem to catch the next one.
Yesterday Luke woke up with the sniffles. Sometimes its runny, sometimes its stuffy. Either way I know he isn't feeling well. He is being a trooper so far and very minimal complaints. What has been happening other than the cold is amazing.
Whether it is pure happenstance or linked I am sure I will never know but yesterday and today he has been playing and babbling. I almost got 'Momma' out of him today. He sat in the living room and played with these plastic toys you link together for over 30 minutes. I was completely blissed out.
His babbling and noises are amazing. It is music to my ears. I wish he would let me catch it on video but the stinker knows when I grab my phone and start to record he just hushes right up.
So while the sniffles truly suck and I know it bothers him to have them, I absolutely love the babbles. There is so much about Autism that is a mystery. I think the missing puzzle piece sums it up pretty well. I won't ever know if when he is sick and acting more 'typical' if it related but I believe it is. There is so much that I don't know. And if I will ever truly know the answers too.
But for now I will enjoy my sniffles and babbles because they are my light in the darkness. The light I so desperately run to time and time again. This light will fade out soon, as it always does but for now it is shining bright. A beacon of hope. For if we don't have faith and hope we are lost. I will never let him get lost. I will always lead us back to the light because it is what I do. I love him dearly. As long as the light never goes all the way out there is always a dim reminder of what once was and hope for a brighter tomorrow.
Thursday, January 10, 2013
Eww What is that? Did you just? Ohhh man!
Now that I have a little bit of time I figured I would get down to my poop post. After reading Momma Fry post about her poop emails today it reminded me that I never wrote about the incident on Saturday, and the blog I promised you all. This is not for the weak stomach kind..its all kinds of gross!!! So if you stick around I applaud u.
It is no secret that winter break was no break at all. We picked up all kinds of bad habits (read last blog post). We are also back into the finger paint with poop phase. Yippiee! You are so jealous of me right? Who doesn't want to clean up crap nonstop? It is sooo the dream life. Last Saturday Luke was actually in his room behaving. Shocker right? I was amazed! He actually brought his blanket in and went to sleep on his bed....or so we thought.
All was quiet, I checked in a few times and he was just laying there sleeping. Emma was also sleeping which is a super rare occasion because she is almost 5 and hasn't done naps in quite a long time. My husband and I are both on our computesr when we here pitter patter on the floor. I know that sound anywhere...its strange how you can tell which kid is which by the way you hear them walk on the kitchen floor.
My husbands says "Ohhh no!!! Hands!!!! (This is never a good sign at all...trust me)
I then turn around and my son is flapping his hands and arms a mile a minute. I grab him still not knowing yet and then he puts his hand on my arm. Ohhhh god...no! No No No!!!! His hands are sooo covered in crap that he looks like he is wearing brown gloves. Awesome right? Yea I know...
I rush him to the bathroom so I can clean him up. Then I see his back side...poop up to his neck. His has obviously been busy while we thought he was sleeping. As I am cleaning him and on the verge of vomiting everywhere my husband walks into his room.
He says "Have you seen his f*cking room yet?"
...No!!!! Not anymore please! (very big internal sigh)
I am a little pissed off by now to say the least and I scream "No! I am trying to get all this shit that is caked onto your son off before I give him a bath.
After cleaning him off, cleaning out the bathtub and then running his bath water I get to see his room.
Smashed into the carpet...his whole train table was covered. You could not see one part of it..all his toys that were on the table had some on them. Needless to say I went through tons and tons of bleach....
What I truly don't understand is how he can play with poop but yet can't touch most every day things? How can he stand the smell, cake it under his fingers but yet hates having his nails cut or anyone touching his nails? But poop is totally cool with him? If he only knew!
Two days later when I had a realtor over (she is a friend so she just came over to discuss houses) he was in my bed room painting my bed in poop again. I threw away the sheets. Totally not worth it to me. I was more than fed up. He can undress himself. I cannot find onsies big enough for him. Sooo yea I hope this phase is over with quickly.
While we are on the subject of gross things...he has also picked up the habit of picking his nose. His fingers are constantly up there now..to the point of his nose bleeding multiple times a day. I keep trying to redirect but he just wants to go right up there again.
And riddle me this Batman...how can this kid eat his boogers?!?!?!?! I all but vomit if I do not catch him in time and he eats it. He is an extremely picky eater!!!! He eats maybe a total of 6 things...but yet boogers are cool? Come on kiddo! Throw your Mom a bone here? Something....
Don't get me started on saliva! Kid has a new obsession with that one too. Isn't it fantastic! Spitting and playing in drool...
Boogers, Poop and Saliva! Oh My!
Hopefully you all haven't puked all over the place. I am done ranting about the nasties. I know a lot of parents go through this, so I bet we all have pretty strong stomachs.
Another day in the life of Autism.
It is always full of.. Ewwww! What is that? Nooooo!!! Did you just eat that? Ohhh man....Don't put that in your mouth! No! Don't wipe that on the wall!
It is no secret that winter break was no break at all. We picked up all kinds of bad habits (read last blog post). We are also back into the finger paint with poop phase. Yippiee! You are so jealous of me right? Who doesn't want to clean up crap nonstop? It is sooo the dream life. Last Saturday Luke was actually in his room behaving. Shocker right? I was amazed! He actually brought his blanket in and went to sleep on his bed....or so we thought.
All was quiet, I checked in a few times and he was just laying there sleeping. Emma was also sleeping which is a super rare occasion because she is almost 5 and hasn't done naps in quite a long time. My husband and I are both on our computesr when we here pitter patter on the floor. I know that sound anywhere...its strange how you can tell which kid is which by the way you hear them walk on the kitchen floor.
My husbands says "Ohhh no!!! Hands!!!! (This is never a good sign at all...trust me)
I then turn around and my son is flapping his hands and arms a mile a minute. I grab him still not knowing yet and then he puts his hand on my arm. Ohhhh god...no! No No No!!!! His hands are sooo covered in crap that he looks like he is wearing brown gloves. Awesome right? Yea I know...
I rush him to the bathroom so I can clean him up. Then I see his back side...poop up to his neck. His has obviously been busy while we thought he was sleeping. As I am cleaning him and on the verge of vomiting everywhere my husband walks into his room.
He says "Have you seen his f*cking room yet?"
...No!!!! Not anymore please! (very big internal sigh)
I am a little pissed off by now to say the least and I scream "No! I am trying to get all this shit that is caked onto your son off before I give him a bath.
After cleaning him off, cleaning out the bathtub and then running his bath water I get to see his room.
Smashed into the carpet...his whole train table was covered. You could not see one part of it..all his toys that were on the table had some on them. Needless to say I went through tons and tons of bleach....
What I truly don't understand is how he can play with poop but yet can't touch most every day things? How can he stand the smell, cake it under his fingers but yet hates having his nails cut or anyone touching his nails? But poop is totally cool with him? If he only knew!
Two days later when I had a realtor over (she is a friend so she just came over to discuss houses) he was in my bed room painting my bed in poop again. I threw away the sheets. Totally not worth it to me. I was more than fed up. He can undress himself. I cannot find onsies big enough for him. Sooo yea I hope this phase is over with quickly.
While we are on the subject of gross things...he has also picked up the habit of picking his nose. His fingers are constantly up there now..to the point of his nose bleeding multiple times a day. I keep trying to redirect but he just wants to go right up there again.
And riddle me this Batman...how can this kid eat his boogers?!?!?!?! I all but vomit if I do not catch him in time and he eats it. He is an extremely picky eater!!!! He eats maybe a total of 6 things...but yet boogers are cool? Come on kiddo! Throw your Mom a bone here? Something....
Don't get me started on saliva! Kid has a new obsession with that one too. Isn't it fantastic! Spitting and playing in drool...
Boogers, Poop and Saliva! Oh My!
Hopefully you all haven't puked all over the place. I am done ranting about the nasties. I know a lot of parents go through this, so I bet we all have pretty strong stomachs.
Another day in the life of Autism.
It is always full of.. Ewwww! What is that? Nooooo!!! Did you just eat that? Ohhh man....Don't put that in your mouth! No! Don't wipe that on the wall!
Thursday, January 3, 2013
Meds, Lack of Sleep and Bad Habbits! Oh My!
My brain is pretty scattered right now so I can going to try to start from the beginning and work my way up to today's events. Please bare with me. This will not be one of my happier blog posts but it does have some good things in it. This is my reality, another part to my adventures in Lukes world and Autism.
It is no secret that I feel that I am depressed and I do have anxiety, it doesn't control my life but it got to a point where I went to the doctor to seek help. I could not stand the way I was feeling anymore and the thoughts that were going through my head. My doc put me on Zoloft 50mg once a day. I have felt loads better. Best I have felt in a long time...except for two things.
One- these crazy, insane, vivid, weird dreams. There were VERY intense and I felt sooo incredibly drained afterwards. I was having them more often than not.
Two- It is very hard to explain...It was like restless leg syndrome but in my arms. If I didn't fall asleep right away after taking my medicine it would start in my shoulders and make its way down my arms. It was like I had to move, rub my arms, shift constantly. It could last for hours and I HATED the feeling.
It took some time to get into my Doc but by the end of December I had my appointment and talked to her about it. She decided to have me try a new medicine- Lexapro. I have only been on it a few days but she warned me I would have a "wash out phase". This is where one med starts leaving the body and the new one takes time to build up. She said it would take a few weeks...I hope this is wrong because it brings me to my next part.
I am feeling awful! I cant fall asleep, I am thinking very negative again and feeling exactly how I felt before all the medicine. Everyday it gets a little worse and combined with my next part I am about to dive into...it was a breakdown waiting to happen.
Luke has been on break for holiday since December 21st. He does not go back until the 8th of January. He hasn't been seeing a OT because of not being in school and the one we want to get him into had surgery. His evaluation with her was supposed to be today but had to be canceled due to complications from her surgery. Although this makes me very bummed, I wish her a speedy recovery. Anyway..back on track! He has been picking up some pretty bad habits that I wanted to discuss with her...
One- he is pinching himself very hard and very often.
Two- he is spitting all over the place now and wont stop.
Three- He is biting himself, mostly his fingers. Biting hard and very often.
Four- Over all just destructive and combative.
So with changing of meds, lack of sleep that comes with Autism plus the changing of meds lack of sleep and all these bad habits...today I finally broke.
Today is Thursday, we have Speech Therapy with Miss Amy every Thursday at 10 am. We went there with no issues, he went back with her with no issues and I was just sitting in the waiting area. Next thing I know I am on the verge of tears and holding on for dear life trying to make it stop. It didn't and I sat in the waiting area and just bawled my eyes out. I am not proud of this, I try to do this in private but I guess it just needed to happen. I started thinking I was a failure as a mom, that his Autism was my fault, what if this therapy is for nothing? What if I am doing all the wrong things for him? Was it something I did while I was pregnant with him? Everything I HADN'T thought about in a long time since being on my original meds. I was broken, I felt small and like a piece of crap to say the least.
Poor Miss Amy comes out with Lukas and he is smiling so big. Well shit, now I am caught in the act. She says oh no whats wrong? Wait you don't have to tell me. I love her to pieces, she is such a nice person. I explain to her whats going on and how I am feeling and I think its a combo of a few things and I just broke down. She sat and talked to me, which is what I think I needed too. She told me about his session which was the turning point in my day, which leads to the good news. Enough of my emotional ranting lol.
Luke said 'more' for her today in therapy!! Ohh man it was the other kind of medicine I definitely needed, the kind that you dont know you need until you get it. He did his snowman book almost all by himself! So proud of him. He saw me upset and just had the biggest smile on his face. Which brings me to my next thing.
Since coming home, he has said momma a few times. He has also said more a few more times. Every time I break down like this he seems to know. I mean EVERY TIME I breakdown he will start to say momma or a few other random words. It is like he is bringing me out of the darkness. He is my light that I keep running to that I so desperately need to find. He will be silent for months on end and then bam! He is saying Momma, Dadda, that, car, bye. Is this something clicking inside him? Is this a big coincidence? Is this an act of God?
Will I ever know the answer to that? Probably not and that is ok by me. It is exactly what I needed, right when I needed and that is all that matters. I know it is inside of him somewhere. Maybe it will only be spurts like this for the rest of his life, maybe a few years down the road it will stick around. For now I have my big ball of light in the darkness and I am holding on for dear life.
It is no secret that I feel that I am depressed and I do have anxiety, it doesn't control my life but it got to a point where I went to the doctor to seek help. I could not stand the way I was feeling anymore and the thoughts that were going through my head. My doc put me on Zoloft 50mg once a day. I have felt loads better. Best I have felt in a long time...except for two things.
One- these crazy, insane, vivid, weird dreams. There were VERY intense and I felt sooo incredibly drained afterwards. I was having them more often than not.
Two- It is very hard to explain...It was like restless leg syndrome but in my arms. If I didn't fall asleep right away after taking my medicine it would start in my shoulders and make its way down my arms. It was like I had to move, rub my arms, shift constantly. It could last for hours and I HATED the feeling.
It took some time to get into my Doc but by the end of December I had my appointment and talked to her about it. She decided to have me try a new medicine- Lexapro. I have only been on it a few days but she warned me I would have a "wash out phase". This is where one med starts leaving the body and the new one takes time to build up. She said it would take a few weeks...I hope this is wrong because it brings me to my next part.
I am feeling awful! I cant fall asleep, I am thinking very negative again and feeling exactly how I felt before all the medicine. Everyday it gets a little worse and combined with my next part I am about to dive into...it was a breakdown waiting to happen.
Luke has been on break for holiday since December 21st. He does not go back until the 8th of January. He hasn't been seeing a OT because of not being in school and the one we want to get him into had surgery. His evaluation with her was supposed to be today but had to be canceled due to complications from her surgery. Although this makes me very bummed, I wish her a speedy recovery. Anyway..back on track! He has been picking up some pretty bad habits that I wanted to discuss with her...
One- he is pinching himself very hard and very often.
Two- he is spitting all over the place now and wont stop.
Three- He is biting himself, mostly his fingers. Biting hard and very often.
Four- Over all just destructive and combative.
So with changing of meds, lack of sleep that comes with Autism plus the changing of meds lack of sleep and all these bad habits...today I finally broke.
Today is Thursday, we have Speech Therapy with Miss Amy every Thursday at 10 am. We went there with no issues, he went back with her with no issues and I was just sitting in the waiting area. Next thing I know I am on the verge of tears and holding on for dear life trying to make it stop. It didn't and I sat in the waiting area and just bawled my eyes out. I am not proud of this, I try to do this in private but I guess it just needed to happen. I started thinking I was a failure as a mom, that his Autism was my fault, what if this therapy is for nothing? What if I am doing all the wrong things for him? Was it something I did while I was pregnant with him? Everything I HADN'T thought about in a long time since being on my original meds. I was broken, I felt small and like a piece of crap to say the least.
Poor Miss Amy comes out with Lukas and he is smiling so big. Well shit, now I am caught in the act. She says oh no whats wrong? Wait you don't have to tell me. I love her to pieces, she is such a nice person. I explain to her whats going on and how I am feeling and I think its a combo of a few things and I just broke down. She sat and talked to me, which is what I think I needed too. She told me about his session which was the turning point in my day, which leads to the good news. Enough of my emotional ranting lol.
Luke said 'more' for her today in therapy!! Ohh man it was the other kind of medicine I definitely needed, the kind that you dont know you need until you get it. He did his snowman book almost all by himself! So proud of him. He saw me upset and just had the biggest smile on his face. Which brings me to my next thing.
Since coming home, he has said momma a few times. He has also said more a few more times. Every time I break down like this he seems to know. I mean EVERY TIME I breakdown he will start to say momma or a few other random words. It is like he is bringing me out of the darkness. He is my light that I keep running to that I so desperately need to find. He will be silent for months on end and then bam! He is saying Momma, Dadda, that, car, bye. Is this something clicking inside him? Is this a big coincidence? Is this an act of God?
Will I ever know the answer to that? Probably not and that is ok by me. It is exactly what I needed, right when I needed and that is all that matters. I know it is inside of him somewhere. Maybe it will only be spurts like this for the rest of his life, maybe a few years down the road it will stick around. For now I have my big ball of light in the darkness and I am holding on for dear life.
Wednesday, December 19, 2012
Holiday Doubts
Maybe it's because I haven't been sleeping well and my state of mind isn't ever optimistic when I am over tired but I am having huge doubts about everything I got Luke for Christmas. I didn't get him a lot of "toy toys" this year, more learning/development toys. I know he doesnt get Christmas or birthdays at all but I wonder if he will like anything I got him.
He is so hard to buy for, all that I know he likes are DVDs and Dinos. He doesn't appropriate play with anything, even his dinos he doesn't truly play...he just carries them around. I know he LOVES them but he doesn't interact with them on a play level. So here I sit asking myself over and over if I did things right for him.
Did I just waste tons of money again this year?
Will he play with anything I got him?
Will the developmental toys be hard for him to do and only make me feel worse?
Will he even attempt to open one gift this year?
Will he ever understand Christmas? Or Birthdays?
I wont really know until the day comes but I cant shake the feeling. I keep dwelling on it but the day is rapidly approaching.. He has no way of telling me what he wants, as much as I get him..I don't know what things could potentially bother him.
Holiday doubts suck. Not sure how to clear my mind of it. Only one way to tell and that is it sit and wait patiently for Christmas to come. All I can do is hope for the best. That he will like at least one gift.
He is so hard to buy for, all that I know he likes are DVDs and Dinos. He doesn't appropriate play with anything, even his dinos he doesn't truly play...he just carries them around. I know he LOVES them but he doesn't interact with them on a play level. So here I sit asking myself over and over if I did things right for him.
Did I just waste tons of money again this year?
Will he play with anything I got him?
Will the developmental toys be hard for him to do and only make me feel worse?
Will he even attempt to open one gift this year?
Will he ever understand Christmas? Or Birthdays?
I wont really know until the day comes but I cant shake the feeling. I keep dwelling on it but the day is rapidly approaching.. He has no way of telling me what he wants, as much as I get him..I don't know what things could potentially bother him.
Holiday doubts suck. Not sure how to clear my mind of it. Only one way to tell and that is it sit and wait patiently for Christmas to come. All I can do is hope for the best. That he will like at least one gift.
Monday, December 10, 2012
3 am? Hey its the new 9!
So Luke has been pretty good about his sleep lately, frankly I have been super spoiled. By spoiled I mean only up for a hour or so at night, not doing marathon swinging sessions in his swing at 3 am. Not sure what causes these phases...he can sleep good, all through the night for a few nights at a time then BAM! He is waking up all the time, going buck wild in the living room.
Dont get my wrong hunny, you are sooo cute. I mean absolutely adorable! But you look so much cuter when you are sleeping my dear! I mean helloooooo! How do you expect Momma to keep up with your crazy ass! Throw Momma a bone here kiddo!
Here is the other issue with my all hours of night wake up calls, Emma. Emma doesnt care when Luke wakes up and keeps Momma chasing him all night. She is up bright and early wanting this, that and the other while I desperately drag myself to the coffee pot. Its like a drug addict honestly! I cannot function without it. I would hate to be a fly on the wall in our house, I would be trying to escape the insanity for getting sucked into it.
Sitting here writing this at guess what time?! 3 am while crazy boy is out there swinging and giggling watching Bolt.
I guess 3 is the new sleeping in? Who needs sleep anyway...totally overratted.....
Dont get my wrong hunny, you are sooo cute. I mean absolutely adorable! But you look so much cuter when you are sleeping my dear! I mean helloooooo! How do you expect Momma to keep up with your crazy ass! Throw Momma a bone here kiddo!
Here is the other issue with my all hours of night wake up calls, Emma. Emma doesnt care when Luke wakes up and keeps Momma chasing him all night. She is up bright and early wanting this, that and the other while I desperately drag myself to the coffee pot. Its like a drug addict honestly! I cannot function without it. I would hate to be a fly on the wall in our house, I would be trying to escape the insanity for getting sucked into it.
Sitting here writing this at guess what time?! 3 am while crazy boy is out there swinging and giggling watching Bolt.
I guess 3 is the new sleeping in? Who needs sleep anyway...totally overratted.....
Friday, December 7, 2012
Goodbye Chair
Luke has never slept in his bed...EVER. When he was a baby we had to constantly rock him and hold him. He wouldn't sleep in his crib either. Once he got big enough he started sleeping in a recliner which we bought when we moved into this house (March '10) It was an awesome recliner so I know why he liked it so much. At first we were able to put a water proof pad under his blanket to protect it. After what I like to call "his Autism kicked in" he could tell something was under it and started tearing it off. We could no longer keep it protected.
So we went and bought a shampooer with a hand tool to clean the furniture as well. That seemed to help but we were cleaning everything about once a week maybe every two weeks if we were lucky. The smell started building, the stains weren't coming out but he wouldn't leave his chair....
Finally we broke down and ordered a new chair, a cheap one from online. Didn't see the point in paying for an expensive chair that he will ruin anyway. Well we got exactly what we paid for..its small, hard as a rock, doesn't rock and only reclines.
Guess who hates the new chair?! I am happy he doesn't like the chair because frankly he is too big for it, he needs to sleep in something more comfortable (was hoping his bed HA). But this chair sucks!!!!!! So now he wont touch and and we don't want to either! lol I rather have old stinky back in the house I think. What a waste of money.
Luke is a little out of sorts, he knows its not "his beloved chair" but all in all he seems ok with it other than refusing to sit down. Not sure how this is going to play out but I just envision him wanting to hug his old stinky chair. He LOVED that chair. Its starting to rain here and I keep asking myself...go out and get old stinky before it gets super messed up? Try to clean it one more time???
But then he will want to go back to rocking and sleeping in it. What is a momma to do?!
Sniffle....Goodbye chair. You were good to us for almost 3 years!
So we went and bought a shampooer with a hand tool to clean the furniture as well. That seemed to help but we were cleaning everything about once a week maybe every two weeks if we were lucky. The smell started building, the stains weren't coming out but he wouldn't leave his chair....
Finally we broke down and ordered a new chair, a cheap one from online. Didn't see the point in paying for an expensive chair that he will ruin anyway. Well we got exactly what we paid for..its small, hard as a rock, doesn't rock and only reclines.
Guess who hates the new chair?! I am happy he doesn't like the chair because frankly he is too big for it, he needs to sleep in something more comfortable (was hoping his bed HA). But this chair sucks!!!!!! So now he wont touch and and we don't want to either! lol I rather have old stinky back in the house I think. What a waste of money.
Luke is a little out of sorts, he knows its not "his beloved chair" but all in all he seems ok with it other than refusing to sit down. Not sure how this is going to play out but I just envision him wanting to hug his old stinky chair. He LOVED that chair. Its starting to rain here and I keep asking myself...go out and get old stinky before it gets super messed up? Try to clean it one more time???
But then he will want to go back to rocking and sleeping in it. What is a momma to do?!
Sniffle....Goodbye chair. You were good to us for almost 3 years!
Tuesday, November 13, 2012
The wonders of a cardboard box
You have heard me say before that Lukas doesn't play, at all. I have tried all kinds of different toys, the boy just isn't into it. Yesterday I went and purchased everything in layaway and brought it home while the kids were at school. It came in a pretty big box. After emptying said box and putting all the toys in hiding, I left the box to sit in the living room because I had to hurry back and pick up the kiddos from school.
Little man passed out after 5 minutes being home, slept for about 3 hours!!!! (WOWZA)
Once he woke up something awesome happened...He noticed a big cardboard box. Who would have thought a cardboard box is all we needed. He has been playing in it since 6pm last night. He loves it. He puts his dinos in there and crawls in there. He is closing the flapps on it and popping out! Holy shit!!!! He will turn it on its side, make a fort out of it. I cannot be happier right now. This is huge for him.
Now too bad for the cardboard box, Luke is just a little rough and he is doing an awesome job tearing it up! He is definatley making that box his b*tch! It wont last long but maybe I can find another. Anything to get him to play.
It is amazing to see the sparkle in your kiddos eye. He is super happy right now and that is all that matters. It's not the traditional type of play...I like to think it's OLD SCHOOL play. I did this as a kid before all these fancy toys came out. I am sure most of you have done the same. He is very simplistic, he loves very simple things, means he is using his imagination to play =) Go get the box mean boy!! Show it who's boss!
Little man passed out after 5 minutes being home, slept for about 3 hours!!!! (WOWZA)
Once he woke up something awesome happened...He noticed a big cardboard box. Who would have thought a cardboard box is all we needed. He has been playing in it since 6pm last night. He loves it. He puts his dinos in there and crawls in there. He is closing the flapps on it and popping out! Holy shit!!!! He will turn it on its side, make a fort out of it. I cannot be happier right now. This is huge for him.
Now too bad for the cardboard box, Luke is just a little rough and he is doing an awesome job tearing it up! He is definatley making that box his b*tch! It wont last long but maybe I can find another. Anything to get him to play.
It is amazing to see the sparkle in your kiddos eye. He is super happy right now and that is all that matters. It's not the traditional type of play...I like to think it's OLD SCHOOL play. I did this as a kid before all these fancy toys came out. I am sure most of you have done the same. He is very simplistic, he loves very simple things, means he is using his imagination to play =) Go get the box mean boy!! Show it who's boss!
Sunday, November 4, 2012
Thanksgiving - What I am thankful for...
It's now November, time for Thanksgiving. There are tons of things I am thankful for but I will only post the most recent and near and dear to my heart for now.
My Team! I have an amazing team for Luke. From Doctors, Dentist, School Staff and Therapist. I am truly blessed. I couldn't ask for a better team.
Lets share a little about Doc. I know you read my blogs so I hope you enjoy, I absolutely love you and how you are with Luke. I couldn't ask for a better more caring Doc ever. Doc has had Luke since about 9 months I would say. She has seen him grow. She knows him pretty well and knows when he is having a rough go of it. She was the first to see the signs of Autism in my little guy. She sat with me for about 45 minutes while I cried and cried. She gave me all the connections I needed to get started. She truly listens to me and doesn't dismiss anything I say about what's happening with Luke. She has fought the insurance board for us, to get little man what he needs. She has seen us on a moments notice, several times. She is an amazing woman. I think even if I moved away, I would drive a hour to have him seen by her. You are truly appreciated. Thank you for being you!
Next thing I am thankful for is my school Team. They sit down with me, go over game plans, new ideas, ask me for my advice and what works best for him. I was so worried about the transition to the new school. I am soo glad that worry was for nothing. Miss Shawnna is awesome. She talks to me everyday about what happened at school, which I love soooo much. She even called me this past weekend, she found most of the toys I wanted for Luke for Christmas, on sale. She offered to pick them up for me and exchange on Monday! How cool is she?! She was thinking of us and cared enough to pick it up for me!! Amazing!! His ST at the school is amazing too. She is doing wonders with him. Getting him to do more signs each week. His PT now has him jumping, truly jumping, both feet off the floor (which he loves!!! sensory input woohoo). He has made so many leaps and bounds while being with them. I am over joyed he gets to be with them for the next 3 years.
Lets now talk about his Speech Therapist outside of school. Miss Amy is her name. He took an instant liking to her. He holds her hand, she can touch him, he even smiles and laughs for her. I can tell she truly loves what she does. He gives her a hard time sometimes, bullheaded I like to think. He likes to test the waters and not show what he knows at first to see how far they will push. She just keeps on trucking. She is super sweet and gets him to do things I have never seen. So glad we found her.
What do they all have in common? I know they really care about my little man. Its amazing!! Thank you for being you. I am thankful to have you in our lives. You all become like a second family to us.
My Team! I have an amazing team for Luke. From Doctors, Dentist, School Staff and Therapist. I am truly blessed. I couldn't ask for a better team.
Lets share a little about Doc. I know you read my blogs so I hope you enjoy, I absolutely love you and how you are with Luke. I couldn't ask for a better more caring Doc ever. Doc has had Luke since about 9 months I would say. She has seen him grow. She knows him pretty well and knows when he is having a rough go of it. She was the first to see the signs of Autism in my little guy. She sat with me for about 45 minutes while I cried and cried. She gave me all the connections I needed to get started. She truly listens to me and doesn't dismiss anything I say about what's happening with Luke. She has fought the insurance board for us, to get little man what he needs. She has seen us on a moments notice, several times. She is an amazing woman. I think even if I moved away, I would drive a hour to have him seen by her. You are truly appreciated. Thank you for being you!
Lets now talk about his Speech Therapist outside of school. Miss Amy is her name. He took an instant liking to her. He holds her hand, she can touch him, he even smiles and laughs for her. I can tell she truly loves what she does. He gives her a hard time sometimes, bullheaded I like to think. He likes to test the waters and not show what he knows at first to see how far they will push. She just keeps on trucking. She is super sweet and gets him to do things I have never seen. So glad we found her.
Tuesday, October 23, 2012
What is this clean you speak of?
What is this thing...'clean' you speak of? Is it a real thing? I am not sure I have ever seen it! Does it last at your house? Can you teach me this thing called 'clean'?
Let me tell you a little about cleaning and my house.....
Cleaning is something I do when kids aren't around. Because lets face it "Cleaning while kids are in the house is like brushing your teeth while eating Oreo's." Just doesn't work! But why clean everyday? I have a 4 1/2 year old NT daughter who is a ball of energy and a 3 year old son with Autism. The house might stay clean for a hour if I am extremely lucky. Now some kids on the spectrum love order, to line things up or stack. This is not the case with my Lukas. This kid loves to make messes out of anything he can get his hands on! He loves disorder!
Do I often feel bad when the neighbors come over and my house is a mess, or I have to spend hours cleaning for family to come over because it hasn't been done properly lately, ohhh hell yes! But what am I suppose to do? We aren't pigs, the house itself is clean to a degree. I scrub the floors, do laundry, clean the bathroom. But if you were to look inside my big bay window you would see total chaos!
I cannot find it within myself to clean and try to have a 'clean' house when I know it will be utterly undone within a hour. Who has energy to keep up with cleaning anyway when you have 2 kids? Especially my two..ohh boy they are something else =)
Kids will be kids, they are like mini tornadoes who sweep through quiet little areas of beauty and destroy everything is their wake! Kids should be able to have fun and have toys everywhere I say, partly because I don't want to pick up every 20 minutes and two they should be able to play with what they have. They are only kids once, so let them be kids.
So who else is with me?! Lets go on strike and relax when we have the chance! Life it too short to be cleaning all the time anyway. Lets party when our kids aren't around! =)
Let me tell you a little about cleaning and my house.....
Cleaning is something I do when kids aren't around. Because lets face it "Cleaning while kids are in the house is like brushing your teeth while eating Oreo's." Just doesn't work! But why clean everyday? I have a 4 1/2 year old NT daughter who is a ball of energy and a 3 year old son with Autism. The house might stay clean for a hour if I am extremely lucky. Now some kids on the spectrum love order, to line things up or stack. This is not the case with my Lukas. This kid loves to make messes out of anything he can get his hands on! He loves disorder!
Do I often feel bad when the neighbors come over and my house is a mess, or I have to spend hours cleaning for family to come over because it hasn't been done properly lately, ohhh hell yes! But what am I suppose to do? We aren't pigs, the house itself is clean to a degree. I scrub the floors, do laundry, clean the bathroom. But if you were to look inside my big bay window you would see total chaos!
I cannot find it within myself to clean and try to have a 'clean' house when I know it will be utterly undone within a hour. Who has energy to keep up with cleaning anyway when you have 2 kids? Especially my two..ohh boy they are something else =)
Kids will be kids, they are like mini tornadoes who sweep through quiet little areas of beauty and destroy everything is their wake! Kids should be able to have fun and have toys everywhere I say, partly because I don't want to pick up every 20 minutes and two they should be able to play with what they have. They are only kids once, so let them be kids.
So who else is with me?! Lets go on strike and relax when we have the chance! Life it too short to be cleaning all the time anyway. Lets party when our kids aren't around! =)
Monday, October 15, 2012
Nap Time...Where Are You?
Nap time seems to be coming to an end. Emma has been out of nap time for a while now but she can also entertain herself for the most part and is not terrorizing the house. She is my good little girl. What I am not used to is, Lukas not napping. The past few days naps have been nonexistent! WHY?!?!!?!? Literally how does this kid do it? No sleep ever?! I wish I could get some of that energy.
This kiddo can go on 2-4 hours of sleep all day, running around, going to school, dumping and throwing things all over the house. He is like a one man wrecking team! Ohh mom just cleaned up this..'snickers' lets throw this on the floor, or spill Emmy's cup of milk/koolaid/juice. Not even kidding after I got done cleaning one day, I walk into the kitchen after folding laundry in my room and he has taken everything out of my purse, out of my wallet and the stack of mail on the counter and thrown it all over. I couldn't even see my kitchen floor! How does this little shit not get tired of driving momma nuts!
Nap time is one of Mommies favorite times, how dare you be so rude and take something away I love so much! You didn't even ask my permission..this isn't fair. I call bullshit sir! I will have my revenge someday....I will!!
Now I beg of you on my hands and knees..bring back nap time! Even if its for just 30 minutes to a hour!
Sincerely,
Momma
This kiddo can go on 2-4 hours of sleep all day, running around, going to school, dumping and throwing things all over the house. He is like a one man wrecking team! Ohh mom just cleaned up this..'snickers' lets throw this on the floor, or spill Emmy's cup of milk/koolaid/juice. Not even kidding after I got done cleaning one day, I walk into the kitchen after folding laundry in my room and he has taken everything out of my purse, out of my wallet and the stack of mail on the counter and thrown it all over. I couldn't even see my kitchen floor! How does this little shit not get tired of driving momma nuts!
Nap time is one of Mommies favorite times, how dare you be so rude and take something away I love so much! You didn't even ask my permission..this isn't fair. I call bullshit sir! I will have my revenge someday....I will!!
Now I beg of you on my hands and knees..bring back nap time! Even if its for just 30 minutes to a hour!
Sincerely,
Momma
Tuesday, October 2, 2012
Being an NT Sibling
After getting a post on my facebook page from another mother who has a daughter the same age as mine, I decided to write this post. She asked for any books for the younger NT kiddos who have a sibling with Autism. It got me thinking of all the things Emma and I have discussed, how she doesn't fully understand and how it effects her.
Emma and Luke used to play very well together, they did lots of things together. He was always crawling around following her, such as little annoying brothers do lol. When the changes started to happen he didn't play anymore. He didn't play with her or want to be around her. He had to have his space. She of course does not understand all this. She just wants to run and play with her brother. I would say little brother and he is in the sense of age but he is just as big as her lol.
He started to become violent towards her. Always pulling her hair, started biting her, would slap her and kick. This happened anytime she came near him. There was no safe spot, she was not allowed near him. Emma is very outgoing and chatty..and loud. Of course to Luke who hates a lot of loud noises, this is no good and upsets him easily. I am sure for him, he was very frustrated that he couldn't just tell her to get the hell away and with all the changes going on it was very hard for all of us to cope let alone feel the things he felt.
Things have gotten easier now but we still have problems. He doesn't just hit here for being around him anymore, now he does still go after her if she pushes it but its usually very provoked. They can sit and watch the same thing on the iPad together without a meltdown or lay on the couch together - not touching- but sharing space.
He still doesn't play with her. She is always saying come on bubby lets run! Come on bubby chase me or go hide and I will find you. He does none of these things =( When she goes for a play date or a solo night at Grammies, she says can my bubby come with me? I tell her no, explain that its her time away and to play and have all the attention on her. Her response - but I want him to come. I know she really does but even she needs a break from the Autism life style.
Sometimes, which is getting more frequent, she asks if I think Luke loves her. This breaks my heart. I tell her over and over yes of course he does, he just doesn't show it like mommy and daddy. I have to keep reassuring her. Even though he is younger she wants his approval on things, wants to include him and play. I explain that he is different and sometimes he needs his space. That loud things make him upset so we have to use our inside voice (which doesn't work by the way).
I am thankful for the progress we have made though. When we build a fort they can both enjoy it. He can sit in there and have a good time next to her, while he is enjoying his own thing. I very much hope one say she will understand and he can learn to play with her again. Its a learning process for both of them. She is now a peer student in his Integrated Preschool for other kids with needs. I like this because she is exposed to other kids like her brother and hopefully this will make her understand it better. For now I am a referee and I will keep on slowly trying.
Emma and Luke used to play very well together, they did lots of things together. He was always crawling around following her, such as little annoying brothers do lol. When the changes started to happen he didn't play anymore. He didn't play with her or want to be around her. He had to have his space. She of course does not understand all this. She just wants to run and play with her brother. I would say little brother and he is in the sense of age but he is just as big as her lol.
He started to become violent towards her. Always pulling her hair, started biting her, would slap her and kick. This happened anytime she came near him. There was no safe spot, she was not allowed near him. Emma is very outgoing and chatty..and loud. Of course to Luke who hates a lot of loud noises, this is no good and upsets him easily. I am sure for him, he was very frustrated that he couldn't just tell her to get the hell away and with all the changes going on it was very hard for all of us to cope let alone feel the things he felt.
Things have gotten easier now but we still have problems. He doesn't just hit here for being around him anymore, now he does still go after her if she pushes it but its usually very provoked. They can sit and watch the same thing on the iPad together without a meltdown or lay on the couch together - not touching- but sharing space.
He still doesn't play with her. She is always saying come on bubby lets run! Come on bubby chase me or go hide and I will find you. He does none of these things =( When she goes for a play date or a solo night at Grammies, she says can my bubby come with me? I tell her no, explain that its her time away and to play and have all the attention on her. Her response - but I want him to come. I know she really does but even she needs a break from the Autism life style.
Sometimes, which is getting more frequent, she asks if I think Luke loves her. This breaks my heart. I tell her over and over yes of course he does, he just doesn't show it like mommy and daddy. I have to keep reassuring her. Even though he is younger she wants his approval on things, wants to include him and play. I explain that he is different and sometimes he needs his space. That loud things make him upset so we have to use our inside voice (which doesn't work by the way).
I am thankful for the progress we have made though. When we build a fort they can both enjoy it. He can sit in there and have a good time next to her, while he is enjoying his own thing. I very much hope one say she will understand and he can learn to play with her again. Its a learning process for both of them. She is now a peer student in his Integrated Preschool for other kids with needs. I like this because she is exposed to other kids like her brother and hopefully this will make her understand it better. For now I am a referee and I will keep on slowly trying.
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