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....

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!

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

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.

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.

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!

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.