I was really humbled by the number of people who came by at TNNA and the Convergence Handweaver’s festival to ask after Dmitri. So in light of that I thought it was time to write an update.
Dmitri is doing really, really well. He has started to say a few words and I’m fairly sure that when he says “Mama” he means me. The weekend before Mother’s Day as he was exiting the school bus, the bus driver wished me a happy Mother’s Day. After hearing that he looked at me, smiled and said “Mama.” This moment was mind-blowing for me and stands out as one of the most special moments between us since bringing him home after the loss of his parents.
After everything we went through when my sister passed away from Pneumonia, and then when I lived in Virginia taking care of Dmitri’s Dad while he was dying of prostate cancer I never really thought we’d reach equilibrium as a family and experience every day normal sorts of problems versus enormous, intimidating ones. Of course, we still experience plenty of difficult moments but for the most part life has settled down and we are able to interact as a family.
In the early days of my extended stay in Virginia I had to dress D because he refused to dress himself for school that he had to attend each day. So something as simple as getting ready for the day took upwards of an hour. I’d put his leg in a pair of shorts, he’d kick it out. I’d put his other leg into a pair of shorts, he’d kick that out. It was the same with his shirts, socks, and shoes ad naseum. I’d liken it to trying to shove a jelly fish into a paper bag with the volume cranked up to 11.
But being as Dmitri has limited communication skills due to his Down’s Syndrome and Autism he was showing that he was angry and anxious over the loss we’d all experienced in the only way he knew how. He would also sit down wherever we were when he didn’t want to do whatever activity we were up to. I counted one day that I picked him up off of the floor over 11 times. At 65 pounds, that was 715 pounds a day (I did lose a lot of weight that summer!). Fortunately he has stopped plopping down mid walk almost entirely which is good because the day he did it in a cross walk in the middle of traffic I thought my head would pop right off of my shoulders.
I’m happy to report that he is much more copacetic now with his life and happily settled into a routine. His behavior while in public has improved tremendously based on some unexpected help we received from Dmitri’s teacher at school. She recommended that we use a wheelchair for D while in public although he is perfectly capable of walking and you know? It really made the difference between being stuck at home and being able to go on outings as a family. He no longer approaches strangers, grabs things off of shelves and plops on the ground when comfortably ensconced in his chair. We do still struggle with these issues and tantrums as well when walking in public but hope to address some of these issues with some up coming therapy through the county.
I’d be remiss if I didn’t mention how wonderful Dmitri’s school is for him. He is fully engaged in the school, and is participating with a smart board, responding to simple requests, loving his physical education and over all doing really well. He is surrounded by teachers and aids who love him and treat him exceptionally well.
He has started to say other words, he definitely and distinctly says “Maya” and the other morning he said the word “mean” as in, “Mama is mean because she is making me get dressed for school.” Well, he said “mean” and I asked him if I was mean for making him get dressed and he nodded his head with a big old wicked grin. We’ve told him he is allowed to say all the bad words he’d like, so long as he’s talking. And I think he’s considering our offer seriously.
Adopting a fully formed child with pretty significant intellectual disability has been a huge challenge to say the least. There are so many buzzwords that you have to learn to get the proper services for your child, not to mention the stares and sometimes rude questions people ask in public. And having to go through the gamut of testing has been very stressful. It’s the little things we take for granted. For instance he has a heart murmur but due to his disability is not able to sit still for an EKG or Echocardiagram. That means considerable time and expense (and worry) to have him undergo a sedated procedure to ensure he is healthy (and he is). There’s nothing in the handbook of life that truly prepares you for this type of thing but I feel as if we’re handling things in stride.
Overall although there have definitely been and continue to be difficult times we muddle our way through. Maya and Mike do really well with Dmitri and I hope that in the long run Maya will continue to become a compassionate and caring person that looks out for others. She is already very sweet about her brother and is excited to introduce him to her friends and take him on play dates. Mike has jumped in feet first to parenting another child and gives me a much needed break in the evenings by watching after the kids, feeding them dinner and handling bed time. I am so very lucky to have such a wonderful and loving family.
I’m so thankful that I have a business that allows me to stay at home because I can’t conceive of how I’d have been able to do all the things I’ve had to do in the past year otherwise! I’d certainly have had to quit a traditional job due to the demands of parenting two children and one with significant special needs. Regardless, I’m thankful to be at home with my children and although they make me crazy at times I wouldn’t change a thing.
That’s all for now!