Every Bride Needs Something Blue

Tales Of An Educated Debutante

on life, loss and the joy that rules the day.


 
 
 
 
 




 
The future is far away and scary, but today is lovely.

Adrian H. Wood, PhD


Why I'm Afraid To Talk About My Child's Special Needs

Why I'm Afraid To Talk About My Child's Special Needs

Tuesday, July 26, 2016 Adrian Wood Comments (3)

 

I try to temper how much I divulge, too much may be just that, too much. I have reason to believe it is a conversation to temper because there are those that avoid the too deep conversation with me, perhaps my openness of reality is overtly frightening and maybe you think I may start blabbing your secrets too. Or, is it just more than you can handle or than you bargained for in our light and airy friendship? Regardless of the underpinnings, my special needs talk seems to be scaring some friends away.
If anybody gets it, it's me. Amos is more than I bargained for, too. He belongs to me though and so, I follow when he ventures off into the world or tries to communicate. I know better than anyone the really hard moments especially when the minutes pool into hours of endless frustration. These times are overflowing with endless tears and woeful wailing, both resplendent with careful head banging that propels me, if only for an instant, to think about how easy life would be if I had stopped with three children.
Perhaps that sounds evil or terribly insensitive, but I offer that glimpse of my own heart so you know that the truth is hard for me too. Will you try to understand that it is even harder if I am expected to remain silent? A self induced state where I am seemingly stoic but underneath, a lethal mix of emotions that dispel the notion of actual coping. All a careful coverup and much like a child's game of pretend, it can not go on forever. Yes, we all have to grow up some time and face the shadows lurking within us. You see, the talking and revealing drives them far away in their carriages of fear.
Please don't run away. Come back and don't feel the pressure of not knowing what to say or what to do. This is all new to me too. My life was once like yours, just regular, a typical, sort of big family, with run of the mill traditional dilemmas. I still get all that, I've got all those too. I promise I can talk laundry with the best of them and yes, the grocery store and expectations of cooking healthy meals for squawking children demanding fruit loops, still hits close to home for me.
I try to be respectful of your space as I need all the friends I can get. I don't want my special needs talk to scare you away though I know I cross the fine line too often and yet, I can't seem to help myself. Will you bear with me, just a bit longer, smile and say I'm sorry if I seem upset or flop on my couch and fill me in on the latest gossip? The silence is deafening and I need your voice to remind me about the impenetrable joy that is mine for the taking.

 

Comments
Sally commented on 27-Jul-2016 05:58 PM
Adrian, I appreciate your honest and heartfelt words every day. Thank you so much!
Anonymous commented on 27-Jul-2016 09:41 PM
You are human. Thank God! As the aunt and grandmother to special needs children, I get it. It is tough, but know your road is bumpy now, but it will be smooth in the long haul. We have all wondered "what if" so many times. But we, the family of special needs children, are chosen to be parents and family to some of the best children. Downs, autism, Asperger's, and one of my favorite (NOT), psychomotor retardation are labels. One is scientific but the other is damning. Sometimes a definite diagnosis is not a good thing. Sometimes you get more from the system when there is a little unknown. A little less to blame. A little more hope. Your Amos will be fine. If his speech doesn't develop, he will learn to type (BBC typing chicken is what I used to help a non-verbal autistic child I tutor). Amos will have a secretary. Amos will be. Most of all, Amos will be your blessing. I hope my response brought peace to your heart. You never need to apologize for wanting what is best for your child. Your circle of friends should not be counted by numbers but by quality. Quality is more important.
Judy Dempsey commented on 28-Jul-2016 02:23 PM
I am so happy to hear from you. Frances Inglis gave me Amos' picture which I keep. My Downs daughter, Kathy Dempsey passed away Jan.25,2014 at age 51. She was the joy of our lives. Her speech was never good, but she made her needs known. Her blessed many, many people who knew her including members of our church where she always echoed the Amen of the Lord's prayer. Although she has been gone for over two years I still miss her and our wonderful times together. I know it is hard because I have been there but you are also blessed to be the parent of a special child. much love Judy Dempsey

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