A Dichotomy: Raising a child with special needs

There is this interesting dichotomy in raising kids with special needs. You want so much for your child. You find resources or you work to create them. You reach out to support groups and find friends that understand this new life you have been given. You do all you can to ensure the most opportunities for your child. As your child gets older, you can see easily some milestones ahead they will reach, others are still fuzzy, and some you can see are highly unlikely. The interesting dichotomy is coming to terms with this. You fight so hard to garner acceptance and yet, when you see certain milestones will not be attainable, you find yourself ok with that too.

It’s not a complacency thing. It’s not a resignation thing. It’s a full acceptance thing. It’s a getting to know your child thing. Of course, we can not predict the future for any of our children, but so many more questions surround our children with special needs. There are so many questions in the beginning. Will my child walk and if he does, when will he? Will my child talk and if he does when will he? And if he doesn’t what avenues will we take? Will his health issues affect his daily life? Will he be in a mainstream school? Will the school administration work with his needs or will it be an uphill battle every day? Will he need resource room time? If so, how much? Every day is a new learning experience mainly by trial and error. But then things happen like your child says one word. One whole word. One word you worked on with the speech therapist and didn’t know when or if it would come. And then it does. Of course, you hope this means two words are coming. So you work with the speech therapists on how to encourage two words together. Sometimes what worked to encourage that one word to be spoken doesn’t work to encourage two words together. So you change your process and your patience must be increased whether you want it to or not. You used to be a “planner” by nature. Now you have learned to live “day-by-day.” What looks good on paper does not always replay as perfectly in real life living. You learn to adjust, modify, and rearrange. Processes reveal their outcomes in their own time. But eventually those two words do come, and it is like the clouds parted and angels started singing. Happy tears sting your eyes, you hug your child and your child is looking at you like, “Hey, didn’t I just put a lot of effort into saying ‘Want Goldfish’? Can we get on that please, I’m hungry!”

Now, Wil talks in big, full sentences. Some are abbreviated, but most of his sentences start with a capital letter, have the correct noun, conjunction and verb, and end with a period. He’s been talking to me in big sentences for awhile now, so you would think the angel chorus would have stopped by now but I still thrill at the sound of it. I believe it’s because of the process it took to get here, and starting at a point where I couldn’t be promised if he would talk.

It’s the same when Wil rides his recumbent bike with ease, reads pages in a book, or writes a short paragraph. We went through oodles of bikes to find the right one for Wil. Training wheels, smaller bikes, a tricycle, and finally we struck gold with a recumbent bike. I can hear the angels sing just above the squeals of his tires every time he peels around a corner in our driveway with the look of thrill in his eyes. Reading and writing have been tireless acts of patience on some days, and full of ease on others. When Wil wants to do something, he is the easiest kid in the world. But try to force anything, and you better call it a day right then and there. A friend’s husband who is a psychologist who works with kids with Down syndrome said, “There is stubborn and then there is Down syndrome stubborn. I was told that when I was studying my degree and thought, how could there be much of a difference? Then I got my first job and realized what they meant.” We both had a good laugh over that. All of Wil’s achievements were the end result of a process lived through day-by-day. Trial and error. Learning new ways, tweaking the old, and sometimes it was good, old luck. A celebration of one extra word, one hot rod turn in the driveway, one favorite book read, one dedicated paragraph about his favorite toy truck are so extraordinary in their own right for the journey to achieve them.

Yesterday, Wil needed to sign a form for school. He’s been writing his first and last name for awhile now, so when I asked him to sign the form he asked me, “First and last name, Mom?”
“Yes, right here on this line.” I handed him a pen.
“Wil Taylor,” he said as he wrote out the letters. Then he looked up at me with a big, proud smile. Those poor angels must be really tired of me by now

They say it’s not the destination but the journey. I believe that to be true. I also believe that is why this special needs journey feels in a way like a dichotomy. You have to really reach out so many times to clear the way for your child. To pave a path so no one stands in their way with pre-conceived notions to impede their process. This is very important. But yet, once you start making your way, it’s the little stops along the way that are so spectacular and miraculous. Even though there are certain things Wil may never do because of his extra chromosome, I want to make it very clear that acceptance of this is not a complacency thing. It’s not a resignation thing. What the entirety of this experience is –challenges, stops, starts, joys, thrills and all– is nothing less than a gift from heaven. I know that to be true because every day, even multiple times a day, those angels never fail to appear to sing Wil’s praises right along with me.40683958_10217382635739241_5673216915397410816_n

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