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Friday, November 6, 2015

Even the Holidays are Hard

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*)


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

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.

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? 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!

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 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.

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 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 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!