THE BLOG
05/04/2009 05:12 am ET Updated Nov 17, 2011

Hope for the Best, Plan for the Worst? Ha.

In all my years with my developmentally disabled daughter it has never occurred to me to call any of our set backs -- which we still experience regularly -- as missteps. Most set backs were down right disasters and a large variety of the set backs were the back to square one type.

For example: the new dose of seizure medication that left her so groggy and spacey she just sat there like a rag doll drooling. The doctor's approach was to take the one seizure medication and push it to its dosage limit and then introduce a second seizure medication to augment the first and being told that since she was experiencing so many breakthrough seizures, a third seizure medication was needed. When this system did not control her seizures, we needed to wean her off all the medications and begin a new regimen. This translated into nineteen months and weekly blood work. I blindly went with what the neurologist was recommending. This to me is not a misstep. It was a major setback. When I was told how to wean her off the medicines and introduce new medicines I realized the side effects, the dangers, and confusion it was going to cause, and I swore never to go 'blindly' into any regimen again. Instead of being in such a hurry to 'fix' the problem, I chose to take the time to educate myself first, ask all my questions several times until I was sure I understood the answers, I kept my notes handy and never waited for my next doctor's appointment.

I love the articles that speak of embracing the journey we are on -- we, the parents of these special children. How we should learn to accept our child's idiosyncrasies -- the very same idiosyncrasies that make them unique. Aren't these the very same idiosyncrasies we strive to correct and hope to erase in order for our children to not appear so odd to the outside world?

'Embrace' will always mean the years hugs were impossible to give or to receive from my daughter. The 'journey' will always be remembering what it took to make it from morning to mid-morning and maybe to a little past mid-day. As for the 'idiosyncrasies' that make her so unique... they remain painful, odd, discouraging and precisely the things about her that require so much work change and hope to erase altogether.

As for the uniqueness of our children, here I cannot find fault. They are unique -- but so are we all.

One of the things I would dearly love to pass on to parents with young children with autism of whatever nature is that they will age but not necessarily grow. I still grapple with this concept. Sometimes aging is the enemy, most of the time, however, aging is dreadful. It pains me to hear my daughter talk about living in an apartment and having a job and learning to drive -- all wonderfully appropriate -- only to have her sit and watch Sesame Street or Sponge Bob because they make her laugh. Part of me understands this will always be Christine's world. But there still exists in me a part that remains tormented by this dichotomy. This is why I always refer to her as someone who walks with one foot in a high heel and one foot in a sneaker.

The one way I maintain a sense of balance since I've learned how to walk heel-and-sneaker style in order to engage Christine into a thinking process is to ask her what is the first thing she needs to do in order to...live alone, or drive a car, or cook a meal. Once the first thing is identified then we move into 'what's next'. This works in two very important ways; it creates a way to talk about subjects that may never come true for whatever reason, but it also helps her reason her wants and desires out. This is major, it is definitely time consuming, absolutely requires repetition, but works.

My daughter is different, is vulnerable, is full of impaired judgments, is beautiful and she's all mine. I love her with all that is in me. Now that's a 'journey' I can 'embrace' even when the pain leaves me heartsick and sleepless.