Tuesday, April 8, 2014
ASD KC? WHY?
I am not sure how many of my friends actually know that we have not just one but two boys on the spectrum. I am actually not even sure how many know that we even have one. I swear I tried to tell our story to anyone willing to listen. I share post after post trying to raise awareness for Autism on my personal and business page on Facebook. I thought I was doing enough and then it happened. I got a message from a friend asking if my son is autistic. UGH!
After we had Lawson we were so thankful that everyone made it out a live that we just cherished every moment with him with our biased eyes of perfection. (You can read about his birth story here.) When we took him in for his 2 year well-baby check our pediatrician expressed a minimal concern for language delay and asked us to contact First Steps for an evaluation. We did! He did not qualify. His cognitive delay was only 45% and he needed to have a 50% cognitive delay to qualify. We figured that he was just behind because he was a preemie.
Knowing that we could have him evaluated again by our local PAT in 6 months we really thought nothing about it. As soon as the district re-opened after the Holiday break I called to have set up his evaluation. As a former teacher, that has administered the DIAL, I was SHOCKED that my sweet baby scored a 3. However, even with my training my I had no idea what that really meant and continued to think it was due to him being so early.
After that he was sent to for further testing at our local districts Special Education Center. While we waited for the results we set up an appointment with a Developmental Pediatrician and researched. We researched until my eyes hurt. Do you have any idea how many disabilities there are out there? I shutter at the thought of all the diagnoses I came up with waiting for results.
And then it happened. I was sitting drinking my morning coffee reading some blogs my "friends" write and it hit me. I stumbled upon the latest post on Sweet Song Bird. I have no idea why I stopped to read this particular article but I did. As I read about the journey her family had my jaw just kept opening wider and wider. SHE WAS DESCRIBING MY CHILD.
-The tantrums Lawson had could be wild, violent, and unending
-He did not know his name or mine (actually he called EVERYONE Dustin)
-He communicated by grunting and pointing and when that did not work he had a melt down
-He ALWAYS walked on his toes
-He fell ALL the time
-He never 'played' with toys only looked at them as if trying to figure out how they were put together and what all he could do with them
-A few times if I left him alone to go potty I would return to find him on top on the refrigerator
-If the door were not secure he would leave the house and walk out into the street (twice he was returned by a stranger that found him wandering while we had sitters - we now have special locks on the doors)
-He had no interest in playing with his siblings
-The only way to calm him during tantrums was to literally lay on top of him (something we lovingly refer to as a 'mommy blanket' now)
- He memorized the most amazing things for a child his age. The one that shocked me the most was during the testing phase he did not know ANY of his colors but the end of the day HE KNEW THEM ALL. He know all his letters (forwards, backwards, and upside down - literally)
-He could watch episodes of cartoon and recite them word for word OR even do the motions.
-He was/is a genius with technology (he can do things on an iPad, Computer, Wii, and with our Cable that even I do not understand)
-If we turned on the vacuum he would lay in front of it and try to get sucked in
-Unusual noises sent him over the edge or more accurately in to the fetal position with his hands over his ears
-He could stand at the window for literally hours and repeat the same two words over and over and over and over 'Hi Dustin'
-He HATED bath time
-YOU CANNOT TOUCH HIS EARS
I knew...I knew then he was on the spectrum. A spectrum I knew nothing about!
His development pediatrician confirmed that Lawson was non-verbal and moderately autistic. This was after Lawson hid under the table in his office for a majority of the 2 hour eval because the doctor tried to look at his hands.
Not sure how many of you know this but there are special needs that can be ruled out with blood work. We had to do this...not sure if anyone has ever tried/seen an Autistic child get blood drawn but let me tell you YOU NEED AN ARMY! It took 3 adults (me, my husband, and the nurse) to hold him and try to get his blood. NOT FUN! They cancelled his MRI until his anxiety can be controlled more.
Now, at least we knew what was going with Lawson (aka Aussie) but where were we supposed to go now?
Keep following our journey as we try to build awareness and acceptance in our community.
Do you have an autistic child? How did you find out?
One face of the many faces of ASD KC - Lawson (Do you have a child living with Autism in the Kansas City area? Please send pictures to email@example.com to have them included in our 'Faces of ASD KC' slide show.)