Monday, November 10, 2014

Parenting This Special Needs Child or Adult

 I am filled with anxiety and consternation of late.  I grew up in a generation that did not view disabilities in the way they are accepted today.  I was a wildly difficult child in my teens and adolescence, or so I thought.  I'm currently speaking to many parents with ASD and/or ACC children, and I'm viewing the frustrations that they go through on a daily basis.

My consternation stems from the fact that each one of these parents have made it abundantly clear that there is absolutely nothing their child or adolescent could do that would make them stop caring, stop trying.  I did not have that.

I'm torn between a rock and a hard place.  I cannot fully blame my parents for the reactions to my typically ACC behavior growing up.  I've talked to one parent that is hanging on by a thread trying to support their 24 year old child.  Like me, he can be abusive, aggressive, seemingly illogical and not wanting to engage their parent's help.  I was much the same.

The difference is, this parent has never given up hope, never stopped trying.  My own parents stopped trying years ago.  They refuse to acknowledge my disability, and instead label me as having character defects and immorality.  My parents are quite old now, 79 and 76, and I know they won't be around much longer, and this (internally) tears me apart.

Talking to my therapist I was explaining all this.  I was describing how insane I felt, still yearning for a relationship with my parents, while at the same time acknowledge their neglect and abuses of me.  How crazy I must be to want that.  She told me though, that the bond will always be there, my parents will always be my parents and that this will never go away.

Perhaps I could have tried harder to reconnect with them in earlier years, but frankly I have been scared.  My father since my teenage years has been the consummate bully.  I tried several times in my younger years.

When my brother Billy was getting married, I visited my parent's home for the first time in years.  I remember it clearly.  For the first 20 minutes or so everything was fine.  Here I was a young man in my twenties, and within minutes they were treating me like the 10 year old boy they remembered.  I sat in my parent's hot tub, and something came loose...immediately I got "you break and ruin everything you touch, you always do, why can't you change."  The next day, they had given me the house key, I had gone to wander in the woods behind our house.  Enjoying the day I remember laying on my back, looking up through the trees up to the sunlight.  I apparently dropped the house key out of my pocket.

Upon reporting this to my parents, I got "you can't be responsible for anything, why can't you be like everyone else?"  This was so utterly overwhelming to me, that without telling anyone I got into my car in the morning and I left to go back to California.  It was my brother's wedding, I was to be his best man.  Yet I was filled with so much pain I couldn't stay any longer.  I'm not sure my brother ever forgave me for this, but I know he wasn't aware of the entire situation.  The last I talked to him was some years ago, when I was having heart problems, and I wanted to make him aware.

I'll stress again, that my parents are products of their time, and at least in that regard are not fully culpable for their (mis)treatment of me, but I doubt they will ever have the foresight and humility to admit any of this, although I wish it were true.  Even today with all the internalized anger and hurt that I have towards them, I would drop all of it in an instant, setting aside the past, just to have a chance to connect with them in their twilight years...but I'm afraid this will never happen.

I want to say, how proud I am to be part of making life better for this younger generation with ACC.  My wounds will never completely heal, as I doubt my parent's own wounds will either.  But I know I am making a difference in people's lives.  So many of you have come forward to show your love and support, your belief in me, and I'm so grateful.  It makes my wounds and pain that much more tolerable, knowing that my encouragement reinforces your efforts to love and support your child(ren) unconditionally.  Without this, I would have very little reason for living.

Thank you for visiting with/ reading my blog.  Thank you for spreading the word about ACC and ASD.  Thank you for believing in me, where others could or would not.

Thank you,

Joseph

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