Sunday, June 15, 2014

Shards of Severe Autism Reality

We were cleaning books and papers out of the "China Cabinet" in our kitchen today.  We had never stored China there only photos, albums and papers.  Like other China Cabinets though there were glass doors on the front through which you could view the China.  Over time Conor had, on different occasions, while suffering meltdowns,  put his hands through the glass windows.  I thought I had gotten all the glass  out on each occasion but today after moving a group of albums I found some shards of glass, shards of severe autism realities.  

Such events are not talked about by those alleged "thinking persons" and others who talk breathlessly about the joys of autism and criticize parents, and grandparents, of children with severe autism disorders and intellectual disabilities who talk honestly about the severe challenges faced by their own children, the children they love.  Personally they will not stop me from talking honestly about the severe autism disorder from which my son suffers and yes he does suffer from it.  I will continue to speak the  truth about these serious neurological disorders and if my words seem to them like shards of glass then so be it. 


Anonymous said...

Nobody knows your sons challenges like you and your wife would. Until they walk a day in your shoes, or maybe a day in your sons shoes, others should enjoy their life and allow you to continue to share what your truths are. If they disagree with you they need not read your blog. BN

Anonymous said...

I appreciate you reminding people of this on your blog Harold. Many other parents appreciate it as well since the main voices out there seem to be of parents who write how wonderful autism is and how their quirky, barely on the spectrum kid is just a bundle of fun. Yeah, not the case for many parents of severe kids.

Below is a response on Facebook from a mom to yet another rant from Jessica Wilson, Diary of a Mom, Neurodiverse Queen Mom of the blog world, against Autism Speaks. This time her beef is with the fact that they use the blue light for boys and she obviously has a girl so this really pisses her off and gets her giant ego bent out of shape. She stresses yet again today on her blog and Facebook that she hates AS and endlessly hints that anyone who doesn't cherish autism is just plain wrong. She so clearly targets her writing towards the Neurodiverse since word is she is writing a book and no doubt knows who she wants her audience to be. Her best buddies are John Robison and Ari N so that says it all.

I am glad to see someone challenge her. She typically deletes any comment that doesn't tell her she is basically the second coming of Christ. She and all her other Neurodiverse minions have no idea what it is like to walk in the shoes of a parent whose child has severe challenges from autism. She doesn't speak for me or many other parents who live with severe autism.

Ambra King "I get your point. I really do. But here's what I see; the mother of a girl who is functioning. If you had a child who was entirely nonverbal despite every known therapy, would you want a cure? If you had a child who harmed everyone around him during meltdowns so that the only choice was isolation from the world, would you want a cure? If your child could not tolerate the presence of other children AT ALL, couldn't tolerate the brightness of sunlight, couldn't travel even in a car ride to the park or to a field where he could run with abandon, would you want a cure?

It is one thing to disagree with an opinion on what autism is; every persons right. It is one thing to disagree with how autism should be approached or treated; every parents right. It is another to so completely associate autism with your own child that you forget to empathize with those who have it "worse".

My side muscles are pulled do badly I can't turn to the left, my shoulder blades are so pinched I can't lift my arms over my head and my hand hurts as I type because I have either a sprain or stress fracture in my right wrist. I hurt like this because of the therapeutic holds for my 5 year old autistic son whose meltdowns are violent and self harming. He also bolts when he panics so restraint is our only option."