Last week I had the opportunity to attend a very informative and helpful information night for newly diagnosed families with Autism. During the night one of the Employees of the facility that hosted the event (also a mother of an autistic son) warned against feeling that High Functioning Autism was not as valid a concern as other diagnoses of Autism (classical, severe to moderate etc).
I know that the comment was directed at me, for I was the one that had referred to my son as “high Functioning” several times through the night when asking the developmental pediatrician a question in regards to my son or thanking the ABA (Applied Behavioral analysis) team for mentioning that this sort of therapy works best for children on the severe to moderate Autism range.
I understood why this Mom warned us/me of this.
Some parents feel that because their child is fortunate to have mild autism that there will be no problems, requirements for therapy, extra help or alterations to day-to-day functions etc. THIS IS NOT TRUE and it is detrimental to the child to live with this belief.
I think what was missed is that even though we had onlyjust been diagnosed formally with this amazing Centre we have lived with the knowledge of Lincolns diagnoses for a year or so and known that we were probably dealing with some degree of Autism for closer to 2 years. We had lived actively in the world of HFA and we were good friends with all the interesting idiosyncrasies that effected our amazing little boy.
For those of you unfamiliar with Autism, let me walk you down memory lane for a moment…
Kelsey’s. A Weekday afternoon during early 2007. Lincoln was about 2 1/2.
A tired Mom decided she needed a little air and left Dad at home with new baby brother and took here cute little guy out for lunch. Mom remembers fondly doing the same with a friends child about the same age and enjoying their ‘special’ lunch together. IT was so adorable to see the young child feel grown up, peruse the menu and small talk just like a grown up. He beamed with pride and it stayed a vivid memory for her almost 20 years later.
Her little boy climbed up into the booth and took a moment to look around. Mom asked him what he would like to drink and he responds. They sit.
Mom smiles and offers a little small talk. Cute son blinks. Cute son looks around. Cute son acts like he did not hear Mom.
Mom smiles, this time a little forced and tries again. THe clock ticks by. Tick, tick, tick.
Mom smiles her way through lunch but deep down she feels disappointed. She feels worried. SHe stores the memory in a special spot in her mind where she knows if she starts to pile up similar memories she will need to delve into another frame of mind that she doesn’t necessarily want to. Time will tell. She hugs her son and tells him he was perfect company.
6 months or so later… (and please don’t think there were no little stories between then and now)
A 2nd brother is welcomed into the family.
Mom and Dad decided that the 2 older children will stay in daycare a few weeks to allow Mom to heal from her 3rd c-section. Dad takes both children out to the car to drop them off at the same daycare they have gone to w without protest for months. As the door closes Mom sighs and snuggles her brand new little bundle to her. She is torn from her comforting moment by the shrill scream of her son. glancing out the window she sees Dad trying to get her son off the front lawn. He is screaming “No. no I want to stay home!” and kicking and dragging his feet. Mom runs to the door and trys to console her son. The younger boy is standing there looking confused. Just as confused as Mom and Dad feel.
It does not take long until Mom decides her sons comfort needs to come before hers. She calls the daycare and tells them that the children will no longer be coming. She offers to pay for the week and hangs up the phone.
Mom is scolded by her parents for giving in to her son. She needs her rest, “you don’t want another infection because you did too much” No, no Mom does not want that, but she knows her son and her son needs to be home where he feels safe. She hugs her son, and stores another memory.
6 months more….
A busy Mom takes her three little boys out to the grocery store for a few items. She puts the baby (just able to sit) and the 2nd boy in the front of the cart and her almost 4 yr old son she allows to walk. He is a little mischivous and likes to run but Mom explains that she needs him to ‘help’ and walk with her not run. He agrees, and they head out. Through produce everyone stays happy and helpful, counting apples and bagging potatoes.
Mom still to this day has no idea what it was but she noticed her son tense and then a split-second later – BOLT.
Without thinking, Mom bolts too.
She leaves her baby and toddler son unattended to chase her older son down. He is fast. Mom not so fast.
Calling to him to stop is not an option. He won’t and he won’t acknowledge that stop is a command you must follow.
Although only a minute later (it seemed to Mom like a hour) she returns to her children with her son and abandons the cart full of groceries, almost forgetting her purse. She is flustered. Angry. She tries to compose herself because she does not want to upset her children. People are starring. She could care less.
“Come on, Honey” She tells her son, the runner.
After she gets them all safely in their car seats she lets out a long sigh and a silent prayer for strength. After all, she will inevitably have to go shopping with 3 kids again.
Add one more to the stack.
And the most important memory…the clincher.
After a long year of uncertainty of whether Lincoln was ready to attend school a nervous, leery and worrisome Mom and Dad take Lincoln to his first day of school.
Mom and Dad had debated back and forth for months wondering if school was a good idea. It was only JK and not alllll kids are ready. It isn’t mandatory afterall. But, Lincoln was almost 5 (being a January baby) and he seemed bored at home. He warmed to the idea of school and even asked when he was going to go! Surely, that is a great sign that he was ready.
Mom still did not feel good about the choice. She felt something nibbling at her, deep inside her mind, perhaps from that stack of memories that now perched precariously on the edge of reason in the inner most part of her mind, and heart.
Lincoln went to school and he did not even turn around to wave good-bye.
He marched inside and the door shut.
Mom and Dad waited. And waited.
Then they got in the car and drove home. Hours lapsed and Mom laughed at herself for being so overprotective and negative. She needed to relax a bit.
Then came the call.
“He is not doing well, you need to come get him”
Mom will NEVER forget her son’s face when she rounded the corner and entered the office. The little boy that talked little was a never-ending blast of words.
“I was so scared. Please, don’t ever leave me. I wanna go home. please Mommy, don’t make me stay. Please, I wanna come home. I was so scared, I miss my family…”
“He’s been crying for sometime but he started scaring the other children so we had to bring him down here…he was curled up on the floor in the fetal possition…better be prepared to get him tomorrow too”
Something in Mom shut down, then was reborn into a resolve to help her son.
“I don’t think so.” Mom said. “I don’t think he will be coming back this year. He isn’t ready. He needs some help. Thank you though”
Mom hugged her son. “It is going to be ok” And she believed it.
That was THE point for me. I called my family Dr on the way home from the school and asked to be referred to a specialist.
Over the next year we visited Drs and therapist, clinicians and workers. Where the waitlist was too long for my liking we hired someone ourselves to speed up the diagnoses so we could move on to the therapy in order to help our little boy. A new baby came and that maternity leave afforded us some time to work with Lincoln, attend meetings and even re-enroll him mid-year and attend class with him (as there was no EA time available for him).
Where I might seem to come off as a Mother that boasts that her child is high functioning, I guess I have failed my family. If I seem to be a Mom that wears rose coloured glasses when it comes to a label, I apologise.
I am not that woman, nor do I wish to be.
I believe my effort to help my child when it is needed and not to try to fix him may be confused for a denial of who my son is.
I love my boy. I love him for his unique self. I am not afraid of Autism nor am I afraid of what it means for my child.
I do though refuse to run my son places for a third or fourth or fifth opinion. I suspect he will be autistic forever, I am pretty sure that is how it works.
I do believe his level of autisticness may wax and wan overtime. He will learn to cope, to succeed and thrive.
I won’t insist he try all therapies because he won’t benefit from that.
He is a happy boy now with the level of assistance and therapy he has and he is doing all the things he needs to with growing success. I won’t waste an opportunity for another child that truly can benefit from a therapy or funding dollar that I don’t need.
Now, that is not to say I will not take a therapy spot that is offered that WILL help Lincoln, or accept a funding dollar that will help our family get Lincoln an activity opportunity or respite worker that will keep him safe and happy, it just means I will not needlessly take those things.
High Functioning Autism may be easier to deal with them severe or moderate Autism but it is still a battle.
People look at my son and they do not see his impairment. They see a lovely little boy with a goofy smile and happy disposition.
Kids at school will not understand why he acts oddly, and parents at playgrounds or play groups will not understand why he may not listen to his parents or stop running when directed.
Sometimes, and just sometimes, I long for that invisible label to be a real one. One that people CAN see, people, WILL understand and perhaps offer just a little assistance and empathy. For the sidelong glances to fade away. For the disbelief to be exchanged for acceptance.
We are all just trying to help our children. We all are trying to find our way.