In late 2008 while my husband a U.S. Marine was deployed in Iraq our pediatrician said " I want to have my little girl tested" (meaning my daughter Maya J (nickname) WHAT???? tested for what? She was about 15 months at the time and I brought her to the doctor out of her stroller (what the hell was I thinking). Of course she was all over the exam room. In particular she grabbed the rolls of paper towels and lined them up.....HOLY CRAP! I had that feeling...but nothing was said so we let it go
In 2009 when he returned home (thank god) we took her for regular visit and again doctor mentioned it. So I took her to a Pediatric Neurologist (and I use that title lightly) he wasn't.....his office looked like an AARP office and there wasn't a child's table, toy or book anywhere in sight! He exam SUCKED....he had my almost 2 year old now look at a binder filled with OLD tiny pictures (as in like dittos from the 70's) SERIOUSLY???
He asked colors...she rambled correct answers. yay! He asked her to draw a circle.....she drew a smiling face. yay! Then he asked her to identify some pictures...ball,sun,car, and then he points to a woman standing with an apron in front of a stove (wth??) and she says A lady and a box. He looks disappointed and says what is this...she again says its a box. Why the hell would my child who isn't even 2 know what a stove is....she doesn't cook and I don't let her near the stove. We lived in an old farmhouse style house where the kitchen was in the back and quite small. She has no business in the kitchen, that's what living rooms are for. So he tells us that he is using the Autism checklist and that she has a few symptoms such as not making eye contact. Hello strange man, she doesn't know you! She barely knows her own father who has been gone 12 months of her 20 months life .NEXT........
I then called Children's Specialized Hospital in Mountainside, NJ and made an appointment with an actual Pediatric Neurologist there. On visit day....Maya J was cooperative she played, colored, but again to herself and not much eye contact. She answered every question and even gave information that wasn't required. The doctor said that her IQ was extremely high and that she had well over the amount of words a 21 month should have. Problem is that she didn't know what to do with them. She never asked for anything, I just gave her whatever I thought she wanted....food, toys, nap. At the end of the visit it is determined that she is diagnosed ASD. Autism Spectrum Disorder! My husband and I drove the 25 minutes ride in silence as Maya slept in the back seat and the tears streamed down my face quietly. I blamed myself...I thought that she was an independent child so I didnt push her to interact with me. I loved the fact that she wasnt clingy and I could go to the bathroom and her not scream and cry. Was this my fault?
There are so many variations of this disorder that they have now created a spectrum. Before if you were Autistic that was it, until they realized that not every child is the same and has the same disabilities. If you saw my daughter you would never know she has any type of disability. However ask her to move from one thing to another and......you either get a crying fit, tantrum, or complete sadness and face covered. Ask her to wear a warm up suit and sneakers when she wants to wear jeans and her rain boots. Ask her to chew chicken when she really doesnt want to. Her favorite line is " Im not happy about this", or you might get "this is not my favorite" or "your making me sad" all depends on what she decides in the moment. You cant rationalize things to an Autistic child the same way you do any other child. They don't comprehend on the same level and it's not intelligence it's the way it is processed in their brain.
You never know how your day will go with an Autistic Child. My own husband sometimes can't handle her behaviors. He thinks she is just misbehaving and wants to scold her but I remind him that is part of her disability. My 4 other children, especially my 16 yr old get frustrated with her alot because she doesnt take NO for an answer. But what child does....really?
They actually have stickers that say.....I'm not misbehaving I'm Autistic! It'll be a cold day in hell before I put a sticker on my child to label her for the public to understand. You got a problem with her behavior...come talk to me and I will school you!
The thing that I struggle with the most is sometimes I feel guilty when I see parents of severely Autistic children and how they deal with there child and how they must have compassion and patience. I'm a person of little patience because I'm sort of a perfectionist. I like things a certain way and I like to work fast. I don't have a lot of issues with my daughter except she needs constant interaction and entertainment. That could be from me, toy, tv, sibling wherever she decides she needs it at that moment. And she does the deciding and I try to comply when possible.
I feel sometimes that other parents might see me as lucky and undeserving of services or of her being entitled to schooling. I has been 2 years since her diagnoses and she is due to go back for another evaluation. On her 1 year she had overcome the things that they said she didn't do. My husband asked do you think she is still Autistic....the doctor said "let's just say that they therapy has brought her a very long way". So basically they don't want to take back a diagnosis. I'm curious to see now 2 years later where she is on the spectrum. How do they explain her complain change in socialization skills? I was told that Autism is a medical disorder and that it wont go away. So is she to forever be labeled and be in Special Education classes?
The therapies that she receives are Speech 3 times a week, Physical Therapy 1 time a week, Occupational Therapy 1 time a week. She goes to school Monday -Friday from 9 - 11:30 and her day is jam packed....but that is what she likes and needs. She loves her teacher and her classmates, and although some days are challenging. We are setting her up for success in her future instead of expecting her to fail.
I live in the State of New Jersey and there have been some huge changes in the educational system. I just hope that whoever is in charge doesnt think that taking away Special Services for disabled children is the answer. New Jersey has a very high rate of Autistic children and that would be a big mistake Mr.
My daughter Samayah (a.k.a Maya J)
In closing to this rambling of my Autism battle is this...... you never know what the day will bring!
WHAT IS AUTISM SPECTRUM????? Here is the online definition:
Autism spectrum disorder (ADS) or autism spectrum condition (ASC) is a spectrum of psychological conditions characterized by widespread abnormalities of social interactions and communication as well as severely restricted interests and highly repetitive behavior.
THAT MEANS NOTHING TO ME..... here is my definition!
Autism Spectrum is exactly that a spectrum....can be the child's best and can be the worst all in one day! As a parent my job is to make sure that I have patience and I'm supportive whichever one it happens to be.
I ASK YOU......BEFORE YOU JUDGE A CHILD IN PUBLIC THAT IS MISBEHAVING....THINK BEFORE YOU GIVE A DIRTY LOOK OR MAKE SIGHING SOUNDS. PUT YOURSELF IN THAT PARENTS SHOES.......COULD YOU HANDLE THAT BATTLE?
APRIL IS AUTISM AWARENESS MONTH!
P.O.A.C http://www.poac.net/ is sponsoring a Walk For Autism at my daughter's school on
April 9, 2011
Matthew Jago School
Sewaren, NJ 07077
I'm captain of her team. SAMAYAH'S SESAME STREET CREW. If anyone is interested in walking on our team or making a donation to P.O.A.C in Samayah's name please visit http://www.woodbridgewalk.org/faf/search/searchTeamPart.asp?ievent=440570&lis=1&kntae440570=D1B6F8DD5B3040F7AFF4EDDBFC9905FC&supId=0&team=3953925&cj=Y