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.
Hi Bethany, Like many people who will read this post I am agreeing and smiling as I read our familiar your story is. My daughter is almost 22 now, beautiful, loving, caring...so many wonderful qualities...and yes...Autistic (Intellectually Impaired and has Epilepsy). I have worked in schools for many years in the capacity of an administration officer. Through the years seen so many kids and parents coming and going through the office for many different reasons...I particularly remember one lady who had been having so many problems with on of her children. She came in sobbing one day that her child had been diagnosed with Autism. My response to her was along the lines of...Well, isn't that great news. She looked at me shocked. I went on further to explain that now, at least she knew which direction to start helping her child. Here one of our local schools as a unit specifically set up for ASD/II kids. The teachers are specifically trained in this area and the class rooms are designed to help rather than interfere with their learning. Truly wonderful people. It is a State School. So there is no huge fees to have these special little people in there. They have their own Individual Educational Plan....because they are so individual...
ReplyDeleteAnyway...We are very lucky these days I feel. Because of awareness of these disorders, we are able to make decisions earlier that will influence the rest of their (and our) lives. I know there is still a long way to go...and it will really be never ending...
Congratulations to you...sounds like you are doing a great job. Be proud of yourself as a Mum.
Hugs for you and yours...