I'd like to preface this post with saying that I feel incredibly fortunate to have five healthy children whose struggles are minimal compared to others. I realize that there are children and families battling cancer, terminal illnesses and far worse situations than ours. I just need to vent about my life with a child who may or may not be autistic.
Our second son, who I'll call Tank, confuses the hell out of us. He is amazing: off the charts affectionate, super silly, very bright, focused, intense, stubborn, and über emotional. There are moments every day where I say to myself, there's no way he's autistic. Then five minutes later while he's repeating the same movie quote over and over (delayed echolalia) while running back and forth in the playroom where I think he's definitely on the spectrum.
Tank has no official medical diagnosis and for us there is no need for one at this time. He's receiving all the services he needs without one. If the time comes when he's older and his speech is finally (if ever) caught up where we need a label for treatment purposes, then we'll proceed with making all the necessary appointments. Personally, I feel that his speech delay presents in a way that makes it difficult to properly evaluate him. Plus he's SO inconsistent with everything that it's hard to fit him into any diagnosis. I suppose I should give just a bit of background so it's clear where we're coming from.
At 18 months we had Tank evaluated for a speech delay. He was SO frustrated and only had about 4-5 words. He all but refused to sign back to us and didn't sit still long enough for us to work with him on language. Our family life suffered because of his behavior. I should also mention we had our third son when Tank was just 16 months old. We could hardly take Tank anywhere because he would throw a fit or need to run or just scream and cry. If we did venture out I would wear him in a carrier on my back and would have to have pounds of snacks for him for distraction. We flew cross-country with our three boys and gave the older two lollipops to keep them calm. Tank ate a whole bag of Dum Dums and came off the plane looking like a glazed ham he was so sticky!
Tank qualified for not only two hours of in-home speech therapy a week but also for one hour in-home with an occupational therapist for a fine motor skill delay. At 20 months he began his work and after only a couple of months had enough language to get his basic needs met. He could ask for and sign for food and water, ask to go outside, ask to be held - the basics. Thanks to his occupational therapist he was sitting still long enough to make a few scribbles on paper, sort blocks in a shape sorter and feed himself using utensils.
Six months into therapy his OT suggested we started him on a Listening Therapy program. Tank would wear two-way headphones and listen to "modified music" for 30 minutes twice a day. In very simple terms the idea behind the Listening Therapy is that it "re-wires' their brain. My husband liked to say we were re installing his OS. For Tank, it was AMAZING and helped forge huge language capabilities and helped with his sensory seeking behaviors.
We decided to also throw in some weekly sessions with a behavioral therapist. By the time he was 2 1/2, I was in major therapy burn out (not to mention pregnant with twins...). We were up to 14 hours per week of therapy sessions (7 hours were Listening Therapy which I was responsible for). We decided to drop the behavior sessions (3 hour sessions, twice a week!) because we randomly had had too many changes in therapists (one quit, one retired and another was filling in for our "regular" because she was on vacation). That's not typical and I do want to mention that each behaviorist was wonderful but part of the behavior therapy is consistency which we obviously didn't have.
So, we continued with speech and OT and completed the Listening Therapy program until he turned three. Our Early Intervention services ceased and we transitioned into the Benicia Unified School District Special Education Program. Our little man was observed, I filled out a nice big stack of forms and surveys for the school psychologist, occupational therapist, speech therapist and Special Day Class (SDC) teacher. He of course qualified for the program and we developed an IEP (Individualized Education Plan). He is in an amazing preschool class with seven other children, two aides and a marvelous teacher. The whole program is designed for children with delays similar to his and is very speech heavy. He gets OT once a week and speech therapy as well.
Tank even rides the short bus to school. Yes, the short bus that I'm sure all of us have made fun of at some point in our lives. That's my baby boy on there now. And I'm kind of sad about that.
And here I come to the point of this post. Sometimes I am really sad about having a child who isn't "normal." And then I feel guilty for being so negative, and then I feel like an awful, selfish mother who doesn't appreciate her own child, and then I feel guilty again for thinking I have it so bad when in fact I have this loving, energetic healthy boy. You get the idea: it's a total emotional roller coaster, every day, all the time.
It is hard. It's hard having a child who struggles. It's hard on so many levels. Sometimes it still feels like he's a baby and I'm just meeting his basic needs. Sometimes I see Tank's little brother surpassing him in abilities. It's hard. It's hard to explain to his older brother why it's not okay for him to do ______ (fill-in-the-blank) but Tank can. It's hard not being able to do some things all together as a family because Tank cannot handle ______ (again, fill-in-the-blank). It's hard not knowing how Tank will be in 1, 2, 5 years. Will he have any friends? Will he get picked on? Will he always need such intense assistance? Will anyone ever fall in love with him? And as his mother, what the heck am I supposed to do?! The fear can become so suffocating.
I can't look forward like that with Tank. I have to focus on the here and now and look at how much amazing progress he's made. Did I ever think he would be able to sit at the dinner table and eat with us? No, but he does! Did I ever think I would be able to ask him to look at the camera, smile and say "cheeeese?" No, but he does! I'm hopeful that six months, a year, two years from now there will be even more achievements and that he will continue to grow and surprise us. Tank's brothers and sisters get to be exposed to someone who is different from them. They get to grow up learning early about differences and abilities and how to be kind to everyone.
Tank has been given to us for a reason. He is our son on purpose. I've learned so much about myself from each of my children, but especially him. I've become a more intense fighter and defender. I've learned that despite all the constant doubt and second guessing, I need to trust myself. He is an incredible little being who has been entrusted to our family. Whatever challenges he has in this life, we will all be right there with him.
So when you see Tank out with me next time, I want you to know that he's not dumb, stupid, "off" or weird. He's my special little guy who sees the world differently and can teach you how to see it differently too.