A Promise Kept : by a mother of a special needs child

A Promise Kept

Some promises are like pinky swears, little whims of a deed or intention to be kept. They started when we were children on the playground, in the school yard at pajama parties and created light hearted bonds of friendship. We were conditioned early to know the importance of “keeping promises” and the bonds that would be made or broken if not kept. These were lessons, good and bad, learned and felt, instilled in us to create loyalty and trust.

Some promises are made of love, passion and emotion. The promise to marry, to be there for good and for bad, through sickness and in health, to forsake all others and death do us part. The maturation of those little pinky swears taken to a completely different level and meaning. A promise often times impossible to keep. A promise that again teaches us, good and bad, learned and felt of the fragile nature of promises intended.

Some promises come from your soul. They are not always spoken, they are not given a ceremony, but they are there and they are the most important you will make. These are the promises we make to our special children. They are the ones born of a determination and courage that only a parent can know. These are the promises that keep us up at night and enduring all day. These are the promises, good and bad, learned and felt that we can never break. Why can’t these promises be broken? It’s simple. They come from our hearts in a place so deep they become a part of us.

I made a promise to myself and to my daughter, it seems like an eternity ago, of another lifetime. You will succeed, you will get through this, you will have the life you deserve and I will never give up on you.

For most parents this seems like a very typical promise to make to your child. For a parent with a special needs child struggling to function in a chaotic and frightening world it is anything but. These children test us to the limit. They test themselves to the limit. Every day of their lives is difficult, complex, dysregulated and gains are made in micro-doses. There are times we feel we will not be able to keep those promises we made. There were times I felt I would not be able to keep those promises I made. We not only fear our inability through our resounding inner thoughts but are often told by those we seek advice to adjust our expectations. To them I say, I totally agree. I totally agree that we need to adjust our expectations of how, when and where our children will make those incredible gains. I agree that we need to not only re-evaluate expectations but at times, many times, not have any. Most importantly I think we need to adjust our expectations of ourselves, who we are and for whom we are really setting them for in the first place. So yes, I agree our expectations need to be adjusted but never ever forfeited.

“You will get through this” a spoken promise. What was actually said was “You will get through this because I will be there for you, I see how much you are struggling and I will do whatever it takes, no matter what - we will get through this”

“You will succeed” an unspoken promise. Succeed is a subjective word. Success to one is something very different to another. For me success meant that my child will not only be educated, given the tools and acquired skills to get over her many hurdles, understood and accepted but most importantly respected for who she is. I don’t measure her success with trophies or awards, class standing or popularity. I don’t measure her success by others. I measure her success by her own personal achievements and mastery of her once deficits. Her success is her own and WE earned every drop of it.

“You will have the life you deserve” the promise too important to say aloud. The promise that says happiness will be yours for the taking.

Keeping these promises is no easy feat. The obstacles are enormous and parents are constantly put under a microscope. Special needs parents are often perceived as dramatic, unwavering, filled with a sense of entitlement, over reaching, and inflexible in their pursuit of accommodations and treatments for their children. We are a force to be reckoned with that’s for sure. With the confidence that comes from becoming an informed educated parent we learn not only every nuance of our child’s disorder or disability but the true meaning of being an advocate.

Advocating for the right venue, style and focus of education will be key. Focusing on the positives of our children instead of listening to the negatives will empower not only us but our children to reach goals. In our doing so we not only are standing up for our child but teaching them to stand up for themselves. We are teaching them to self advocate, to think outside the box, to be confident in their differences. There is not a day that goes by that I do not hear from a parent about how their child has not only met – but exceeded their expectations. These kids are special not only in their needs but in their brilliance.

Advocating for the right treatment in choice of medications, types of therapies and a thorough medical evaluation and testing gives to a mutual respect and true collaboration between clinicians and parents. No one knows a child like the parent, being heard gives parents the validation they deserve and opens the dialog for better communication, calm and more productive problem solving. Not only are parents evolving but so are clinicians, gone are the days, or should be, of I know what’s best. Good doctors know parents are their greatest resource in understanding and treating disorders. They say it takes a village “They” are right, but not any village. It takes a village of people that have respect and acceptance of special needs children and the struggling parents and siblings as well.

Advocating for your child is in essence what keeps the promises. Advocating for yourself and your family as a whole, gives you the resolve and strength to keep going and attain your goals. It is “getting” your kid when no one else does. It is understanding the unexplainable, the irrationality and the unpredictability of your child. It is taking a breath, taking a walk, regrouping and always coming back. It is gaining that trust in your child so they know, no matter what, you are their voice and you will be heard. It is keeping that promise and making it to yourself as well “We will get through this”

“You will succeed, you will get through this, you will have the life you deserve and I will never give up on you”.

In the end, despite goals met or unmet, expectations adjusted or exceeded, subjective measures of success and the constant pursuit of happiness, the most important of all the promises is the last.
I will never give up on you.

Marianne

As posted May 28, 2011 at: http://thelifeunexpected.com/archives/1376