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Making the Rubber Meet the Road

At the beginning of March I am to turn in an article for a newsletter about actions and interactions with Ivey that define our life with her. So for the past few days I have been contemplating exactly what all those things are, how to narrow them down, and how to keep it short and still make a point. As always I start by thinking about the ending and how to paint our life with her realistically, yet exemplify all of the rewards that we find in each day with Ivey. And since the article will address mainly professionals of the special needs community, trying to determine exactly how to explain a family's perspective is not that easy.

The two of us, parents and professionals, merge from two different worlds and unite for one purpose. The purpose is to find what we all deem as critical and crucial skills and functions for a special needs child, our children, our flesh and blood, to find that child's unique abilities – capabilities – yet never losing sight of the child's unique inabilities. We, parents and professionals, work as a team. As parents we live with our children 24/7, know them inside and out, know their strengths, are not allowed to forget their weaknesses, and most often are given constructive criticism along with validation from the professionals intertwined in our lives. Professionals see our children for various lengths of time daily, weekly or monthly and strive to build our children's abilities, skills, communication, self confidence and independence. Together we make the rubber meet the road.

That process is not always easy for parents. And at no fault to anyone, it is what it is; we parents learn to take the hits. We learn that the flaws we search for in our children – must be found- we seek out the weaknesses of our own flesh and blood; we endure hearing others evaluate our children- and we strive to strengthen our children with the aid of others who have a longing to help our children. We parents are resilient. We take those punches, suck in a big gulp of air, sometimes shed a few tears and jump right into the deep water. From there we either sink or swim. Most of us always chose to swim. And just like our children, we swim in a redefined way, our own way, unique to only us, our family.

Where both parents and professionals make it a collaborative goal to help our special children progress and gain independence, we as parents are solely responsible for their welfare and place in this life – forever. Our children never leave our minds. We not only see their place in the here and now, but we envision their future. And once we reach their future, whether our children are 18 or 48, we are still solely responsible for them. None of us set out with these intentions for our children. Either way, we grab hold and jump right in. We make big decisions for our children, we worry endlessly, we juggle complex schedules, we learn new skills, we dream new dreams, we raise other children, we sustain healthy marriages, we hold down jobs and we live good fulfilling lives. We make sacrifices. We take the road less traveled.

None of this really has anything to do with our actions and interactions per say. Except that no matter how similar our goals and intentions for these special children are, our roles in their lives are so very different. Even writing our purposes in their lives on paper can make them sound so very similar, but no mistaking, our roles are different. Just as a professional spends countless hours toward a degree specializing in our special children wanting respect for their dedication and knowledge, we parents want the same thing. We want understanding that we know our children too, that we do make every effort to adapt our lives – every moment of every day- we accommodate our children's special needs, we never return to a life, a home that is non-adaptive. One chose the path; the other was put on the path. Either way, we are both experts in our own right.

This article will be a chance for me to advocate for special need families, not just Ivey. Even though the article will not be about this, I hope it still sends a message. Personally, I have had only good experiences with the professionals in Ivey's life. But I was a teacher and a coach too. And before I had children, I could not understand why some parents would possibly do some of the crazy things that they do. Then I had children of my own. We get a little nutty around here. I would say the same might hold true to the differences between having a 'typical' child and having a 'special' needs child. It takes having a special needs child of your own to identify common ground – in PERMANENT real life settings. Or maybe a better example is child birth. We all know it's gonna hurt, but it takes going through real labor to know the true pains of labor – no words eloquently describe it. No matter, our intentions are all the same. Mold the child, raise her well, and beyond all else, LOVE her.

My point/the ending to my unwritten article:

Treat my daughter as if she were your own. Mentally make her your own child. And remember, she is my flesh and blood and it is hard to point out her weaknesses. I never get used to it, nor do I want to. I only learn skills to deal with it. I need a moment to process and file away the twinge of grief from verbalizing what is already obvious and known to me - her differences. We dissect my child when she is already being the best she can be. She is my Ivey. And please be open to learning from me– the parent – just as you want me to learn from you.

Comments

Reagan Leigh said…
Wonderful post. And so well put. We live with these children 24/7 and truthfully we are the experts. If they would just listen to us, they gain so much insight on how to best treat our children!
Anonymous said…
I have great respect for you - you have shown tremendous grace in dealing with the people that dont understand Ivey. Thank you for letting us love Ivey with you ...she has taught us so much !
Anonymous said…
You really should write a book (or books). You express yorself so well.
Anonymous said…
Gwen,

You so eloquently shared what our lives are like day in and day out. There is no break for us and we wouldn't want there to be. When it comes down to it the most important thing the "professionals" could learn from us the "parents" is to listen. Thank you again for sharing your daughter, your life, your heart, your experience, and your expertise with me. I admire you greatly and look to Ivey on those days when all I feel is discouraged about our progress. She has accomplished and continues to accomplish amazing things. She is one of our heroes. Thank you again for the glimpses you share. Sincerely, Trish and Ash
Shannon said…
So very well said. Gwen, alot of professionals will be helped by this. This is never really talked about and should be. I agree with one comment: You should write a book!
-Shannon in Austin
PS: When I was a Case Manager I always called the people I served, "My family". (The younger ones I called my "kids".) It's just the way it was with me.
Heather said…
Amazingly and beautifully said my friend.And I am so proud to be able to call you that.Loving you and Miss Ivey from afar.

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