Becoming the parent of a disabled child

In late 2010 my only brother in law was diagnosed with terminal cancer. In January of the following year my sister passed away unexpectedly from pneumonia, leaving behind her ailing husband and my disabled nephew. I knew the night she passed away that I was destined to become a parent to Dmitri. I made many trips back and forth from my home in California to her home in Virginia over the next 8 months and spent a total of 3 months living in Virginia in part to care for my brother in law as he was dying, to learn how to care for Dmitri with his disabilities, and to go to court to make my new child my new child in the eyes of the law.

Maya and D

Any one of those events is a lot for one person to bear, so I’m not sure how I managed to deal with all three within the span of eight months but I did it. My sister was my best friend and her husband, my brother in law was a fixture in my life from the time I was 13. Losing them was a tremendous blow. While coping with my own grief I was learning to parent Dmitri, who was born with Down Syndrome and has a medical diagnosis of Autism. He is a non verbal child and does not communicate verbally to express his needs or wants. Most of the time it is a guessing game to fulfill his needs other than the basics like food, drink, and basic hygiene.

Dmitri

When I first went to Virginia to care for Dmitri and take care of his Dad, Dmitri wouldn’t look at me, follow even the simplest instruction, and would dart away in front of cars in parking lots and would sit down in the middle of crosswalks.  When we took him in to a store he would physically touch strangers, rip things off of shelves and be as destructive as he could manage in a short period of time.

To say this time was a stressful point in my life would be an understatement. Getting him dressed every day was a battle of wills, I’d put his foot in a pair of shorts, he would take it out, ad nauseum for upwards of one hour in order to get him ready for school or speech therapy. In many ways I was lucky to be able to discuss this unwillingness to cooperate with his father during the last months of his life and learn his parenting philosophy and goals and dreams for Dmitri.

I really hated the thought of making Dmitri do something he didn’t want to do and between the Downs, the Austism, and his own grief when I say he didn’t want to do a damn thing I asked, I mean he didn’t want to do one single thing he was asked. His father told me that they intended that Dmitri go to school and do things that needed to be done although he did not want to comply. So that meant I had to learn how to cope with engaging Dmitri to do these things although each and every interaction was a battle.

D

I say this not to garner sympathy or to elicit grief but to share my story. In the past year of my life I’ve witnessed Dmitri transform himself from a child that was unable to look at even the television with anything but the corner of his eye for a few beats of a second, who would dart into traffic, and approach strangers, to a child who is more and more aware of his surroundings and who is day by day engaging with his family, his schoolmates, and is becoming a little bit more plugged in by the passing day.

He looks like his daddy

We still have our struggles, believe me, but to witness this transformation has been nothing short of miraculous. Dmitri dresses himself 90% of the time now, he looks at us, he listens to a short set of instructions, and will comply (if he feels like it). He interacts with our 6 year old daughter Maya, he plays with his cousins, and instead of departing a room when you walk in he will sit down and stay for a while. There are of course exceptions to his improved behavior but for the most part it’s like living with a different child.

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It’s not any one thing that has been rehabilitative for him and us as a family, but a sequence of harmonious events. I got him into a wonderful school for disabled children. I sought out the local Regional Center. I’ve taken him to Doctor’s appointment after Doctor’s appointment. I read everything I can on parenting, and talk with other parents of disabled children. Dmitri learns so much from observing Maya, his cousins, his classmates, and his teachers and aides. He’s also able to do so much more, like go to the park daily at school, have birthday parties and other social activities that don’t happen when you live on a fairly remote mountain in rural Virginia. (The downside to this being of course, 5 million other people in your county and in your damn lane when you’re driving down the street).

 

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We take Dmitri with us out in public. A lot. In particular, we go to Disneyland all the time with our annual passes and his guest accessibility pass. Waiting in line in a public setting is much less stressful after we took his teacher’s advice and started taking him places and allowing him to sit in a wheel chair although he is perfectly capable of walking. I struggle with each and every decision and weighed the wheel chair use heavily before I decided to use it, asking his doctors, family friends and discussing it with his teachers to make sure this was the best choice for him.

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In the end, any one thing that makes it easier for us to go out as a family and interact with the world helps him make tremendous strides in all areas of his life. And so we learn to ignore the stares and dumb comments we hear from time to time.

When I was away on travel for my business Dmitri really started to do something that was miraculous. It probably sounds small to you, but to us it was huge. He started playing video games on the wii with Maya and my husband Mike.  And earlier this month I visited his classroom and he demonstrated that he was able to use the smart board and thoughtfully interact with the starfall programs on screen.

I felt the tears well up at that moment and my heart swelled with pride. As I write this he is in his room using the ipad with a starfall app in a meaningful way and this morning I watched him drag each letter to the appropriate place to spell “jump.” I really can’t even find the words to express my joy. Each and every day things go a bit easier and I’m reminded of my Sister and Brother in Law and how they live on through him.  He gets lots of hugs and snuggles and is generally a pretty damn happy child now that he has adjusted to losing both of his parents in such a small time and moving from rural Virginia to what might as well be Mars.

Having said all this, I am so blessed to be able to own my own business. It’s meant that I can take Dmitri to all those doctor appointments, visit his school and chaperone field trips, pick him up early when he falls ill at school, and so many other new responsibilities that I can’t even place a name for.

I’m able to work from home, and although I work way more than a 40 hour work week I can do so around the children’s schedules. This year has been an unusually productive year for Fickle Knitter Design. I’ve written and knit enough material for three books that will follow Leaves in 2013 and I have more on the horizon. If you were curious about the person behind the business, this is me, unvarnished. Trying to do the best I can for my kids and my family, while working as a small, woman owned business in the knitting industry.

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About Michelle

Knitting Tin Hats since 2004.
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