I fought such an uphill battle during the awful no-good summer of 2011 when I was living in Virginia, helping care for my Brother in Law as he was battling terminal cancer and trying to learn how to care for D while trying desperately to cope with the devastating and surprise loss of my sister to pneumonia.
I would take both Ric and Dmitri to doctor appointments and D’s therapy and shuttle around oxygen tanks and supplies like the world’s biggest cart mule. I went from zero experience in caring for a special needs child to 100 in about the span of a week and trying to be there for someone who was dying. It was one of the most difficult experiences of my life and I say that noting that my life has never been easy in any capacity. Life is made up of a series of challenges and loss and you work to make your way despite them.
Part of my responsibility that summer meant taking D to speech and occupational therapies when he was off from school. I was warned that he did not like his speech therapist. He would fight me every step of the way on speech therapy day. I would put his clothes on, he would take them off. And my god you never saw such teeth grinding. It was a weird time because I was not his guardian yet and I very much wanted my brother in law to feel like I wasn’t rushing to take over his place. So in that way I hadn’t developed full on mama bear mode yet.
Anyway, I managed to present D to his speech therapist sort of on time and it was a terrible experience on many levels. They just didn’t click and neither one liked each other. They spent the whole hour battling each other for power. D was not able to point to anything and she deemed that he couldn’t follow a one step instruction when in reality he wouldn’t follow a one step instruction coming from her. But she was right that he wouldn’t point at an object to identify it on command, which I also tried many times when we were in the comfort of familiar surroundings and he couldn’t or wouldn’t do it.
She also told me I might as well plan on institutionalizing him when his father passed away. You know one way to make me dig my heels in is to tell me how I have to do something absolutely ludicrous when you have not walked a minute in my shoes. I managed not to make a scene but I made it clear that institutionalizing D was not an option, whether he could “follow a one step instruction” or not. He was going to be a part of our family no matter her ill guided opinions and ideas about what I should do.
I say this to in part describe some of his progress under our care and the amazing group of aides, teachers, administration and support staff at his school for disabled children.
Dmitri can identify anything by pointing at it now if you ask as long as he is in the mood. I asked him to point to photos of every one in his class. He picked out every single student including himself. Last night he was playing with one of his starfall apps that have the alphabet on the iPad and he was fixating on L for ladybug (autistic kids do this a lot it’s called perseverating and it can drive you bonkers until you learn to tune it out). Finally I couldn’t stand to hear L for Ladybug one time more lest all my hair would fall out and I would lose the ability to function, so I went to his room and asked him to please god, pick another letter, any other letter but not L for Ladybug.
So when he pulls up the alphabet I said “Please pick the letter D” and I’ll be damned, he did it. I tried this a few more times with different letters and he got every single one, and finally a matching game with twelve cards came up on the iPad and he was able to do that completely on his own.
And that’s not his only major cognitive milestone.
I made jpgs of all his favorite foods and printed them on a piece of paper and posted it on the fridge. At first he would only point to hotdog. Hotdog, hotdog, hotdog, tap, tap, tap, hotdog, hotdog, hotdog. After a trip out for lunch where he indicated hotdog but then was supremely disappointed when I ended up with in n out burger and he ended up with a hotdog he started to point to other foods on his list. Including corn and peas.
It took him 11 years but he is finding a way to make his preferences known. Can you imagine waiting until 11 to be able to tell your parents what you would like for lunch?? The implications are staggering.
And he is finding new ways to express his needs.
When Mike brought the kids to say hi at my booth at the Torrance hand weaver’s festival this weekend D started signing “eat” like mad to tell me he was hungry. We ask him to sign it when he wants more food at dinner (he can do “more” and “eat”) but this was the first time he signed a need TO ME when he was hungry.
He also knows when it is situationally appropriate to flirt with girls. He loves Andria in particular and blows kisses at her, but when we took the kids trick or treating at Disneyland he blew a kiss to the Toad’s Wild Ride operator. He is a ladies man!
I can’t really even find the words to express how it feels to see him blossoming and communicating and finding his own voice although it’s not verbal. I don’t care if he ever talks as long as he can express himself and what he wants and also what he doesn’t want.
This has been such an amazing journey from square one. He is gaining so many new skills. As a mother of a special needs child you want to push your child to the fullest of their capabilities but also at the same time keep in your heart that they may never walk the path of a typical child, and that’s okay too.
It’s been an incredible journey, to be sure. And I am full of hope to see where it takes us next.