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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

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 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. was 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 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, 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.