Somewhere on the spectrum….
On January 10, 2011 my son J was diagnosed with Autism Spectrum Disorder (ASD). I can remember everything about that day. It was a Monday and I had taken the day off work. The temperature outside was in the teens and so J and I were both bundled in our puffy coats patiently waiting for J’s name to be called.
The waiting room was not child friendly, surprising since it was a children’s hospital. There were some torn books scattered on a table and some weird mirror shaped like a fish that reflected everything upside down.
J tried amusing himself as I filled out what seemed like a million forms. There were insurance forms, privacy forms, health history and family background questionnaires. I answered questions like:
How much did your child weigh at birth? Has your child ever had surgery? Does your child look at you when you call his or her name? Can your child point his finger in the direction of an object? How many words can your child say and at what age did he/she say their first word(s)? Was your pregnancy “normal” ? and What age did your child crawl?
After what seemed like forever, J’s name was called and off we went to get weighed and measured before being ushered into a tiny room with a huge table and a bunch of toys. I was introduced to the Advance Practice Nurse (Sally) who asked me pretty much every question I had just answered on the forms in the waiting room.
Sally then asked J (who was pretty non-verbal at the time) questions before she “observed” him in several different controlled settings. J was asked to “play” with things like baby dolls (I mentioned J is one of 4 BOYS right?), goldfish crackers and a magic wand
Nurse Sally explained that there was no definitive “test” to diagnosis autism. Rather, children must meet a number of criteria in a developmental screening or standardized assessment, to determine if they are on the autism spectrum.
Well, J is fine, I know he does NOT have autism, I thought to myself as Sally babbled away.
Finally after a half hour or so the nurse turned to me and very matter-of-factly said …your son has Autism Spectrum Disorder….
My world was shattered. All the hopes and dreams I had for my blond-haired, blue-eyed baby were gone.
The weeks and months that followed J’s diagnosis are a blur. Suddenly the only things I talked about concerned OT, PT, sensory-seeking, redirection, speech therapy, story boards, PECs, ABA, IEPs, support groups, dietary concerns and whether I would allow my almost 3yo to ride the “little” school bus to his new, ABA, autism, inclusive preschool.
WTF happened to our lives? Why my J??????
Slowly, VERY slowly, things started changing with J. He started to become more and more verbal, using words for things like “cookie” and “tv. ” He stopped pointing to get our attention and started to write his name and do “normal” preschool activities.
In the 2 years since J’s diagnosis we have had many highs and even more lows. For every new milestone it seems like there is a set back hanging out on the horizon.
I often tell people having a child on “the spectrum” is like riding a roller coaster. Just when you start to get used to something and think everything is going to be ok, you plunge into another unknown and feel like you are back at square 1.
J’s teachers and therapists have alwayst told me it’s all about the “baby steps.” I need to focus on how far J’s progress has come and NOT dwell on how far he still needs to go. While I know this advice is true, it is ALWAYS easier said than done.
Last week was President’s Day and J’s school had a small assembly. J’s teacher sent a note home that J gave a small speech about our 4th president James Madison. Miss Heidi said J worked on his speech for weeks and was VERY proud when he was finished.
I saw the laminated “speech” in his backpack and decided to ask him to read it to me and my mom. The little video that follows is nothing short of a miracle. Here is a little boy who, 2 years ago, could say only a couple of words and now he was reading about James Madison!
The look on J’s face at the end of the video says it all and the pride I feel and love I feel for J is overwhelming. He has worked SO hard and it pays off everyday.
Having a child with autism is not easy and there are days I wish J was “normal.” However, then J will do something really, really great, like this video, and I think to myself everything IS going to be alright.