Tuesday, September 29, 2015

Blessings of the Spectrum

For any parent who has a child with extra special needs a diagnosis could be a blessing or a curse (and maybe this just depends on the day). It may or may not be a relief having a new starting point with somewhat structured direction.

I only have the experience of being in my own shoes. And those shoes were usually worn-in rainbow flip flops.

When my child received a "diagnosis" if you will it was a relief. Not because there was a "Oh now we know how to fix it"it was more of a "Now we can get his IEP or 504!".

I remember having a discussion with my husband. I was sitting on our bed the white comforter squished underneath me and talking to him about the parenting struggles and doubts I was having. I talked to him about how I struggle to know what is best to do for our child, how exhausting it can be to deal with tantrum after tantrum and feel absolutely no control over the outcome.

I remember he said "...down the road they may receive an autism diagnosis and it might be nice just to have a starting point". Like the basis of "Oh this is typical with these specialties" and "Its not just me being a poor parent".

I think our real starting point was our child as a toddler. And for years I felt (and was verbally) judged that my parenting was not strong willed enough to will my child to obey. To sit still. To not tantrum.

Since a baby I have read lots and lots of parenting book, trying to find new key pieces to try when just natural intuition wasn't always helping.

I read Parenting the Spirited child, Happiest baby and Happiest toddler on the block, and many of which I never finished because I knew the philosophies were so different than my natural style that they would not work in our home.

For years I was more silently overwhelmed and would get depressed that I wasn't doing enough as a parent. Then I had to come to the conclusion that my job was to help make my child the best human they could be on this earth. Whatever that meant for them.

Yes, I sought help from professionals and my pediatricians but on meeting my child "he made eye contact, he speaks, and they sounds very typical in behavior". But what I see now that they couldn't see was the actual  potency and fervor these behaviors had.

When I described the behaviors (which anyone else rarely saw-they were saved for home most of the time and I began not venturing out as much because I was embarrassed and tired and didn't want to share them publicly-my fault not my child's)AND I primed my child and prepared pretty carefully to avoid extra stressful situations with others around (which obviously led to all outbursts mostly being at home..while my husband was traveling or I was home alone).

 Looking back I think these professionals without experiencing the behavior first hand thought I was an overly paranoid mom.

So, with my child being 7 at the time and receiving a "diagnosis" it was in no way surprising or shocking to myself or husband but it felt like a mini victory for me.

I was not just a bad parent!

I had already guessed they were on the spectrum because in times of trouble I read and research what I can and I had been with children my entire growing up and babysat, did respite care etc through college. I knew what more typical behavior was. I didn't start from scratch on my child development knowledge.

So for any parent who might get a diagnosis, a diagnosis is not an excuse. It does not need to be labeling your child but it can be very empowering. A blessing of a diagnosis or approximatey to one means there is a different starting point and often-and obviously-there is not a cure but it means there is some knowledge out there that can be found that can be helpful.

I still struggle with figuring out my balance as a woman, a parent, a wife and a child of God who enjoys participating in serving at my church.

And some days my childs specialties feel like a curse and I get "woe is me! ish" but the biggest bless that I try to constantly remember in my mind is "I created this child on purpose-they are lent to me from God and I'll be damned if I don't do all I can to help them be their best selves, whether they can aknowledge my efforts or not".

For anyone with a newly enlightened starting point tighten your girdle and keep going. You are capable and doing hard things-even stressful things (which may age us my hundreds of years in the face) brings about the empowerment of personal capability. 

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