False Hope is Brutal
I had a close friend over this weekend to help us with our house remodel. 17 times, yes I counted, he said, “I think Cooper is going to talk someday.” He was so hopeful. “I just know it Kate, he is going to talk. Don’t give up hope. He’s so close.” And it went on. “It’s going to happen. We just need to break through.”
How dare he? He has no facts. No medical knowledge of the situation. I don’t think he’s ever heard of Apraxia or read a sentence about Autism. He doesn’t know about all of the tears I’ve cried. All the prayers. The hope that I’ve had and lost.
And I don’t think he understand what false hope can do to a special needs mom.
When someone says to me, “I think Cooper is going to talk someday” it’s as crazy to me as saying the sun is going to fall today. It’s just so far fetched in my mind.
I tried to explain to him patiently and carefully. There are two things happening here.
First, some kids don’t talk because they physically can’t. Maybe they have a problem with their soft pallet or maybe they have Apraxia. They WANT to talk and just can’t. The desire is there. These kiddos most likely can sign or use a talking device. They brains are full of stuff they want to share. They have a favorite book and they want to tell you all about it.
And then there are kids that have NO desire to talk. This is the part that people don’t see. Cooper has very little to say. This is the Autism side. This is the side that scares the ever living shit out of me. I can do Apraxia. Bring it on. Autism, that’s some scary stuff.
He just stared at me, shook his head, smiled and said, “But I really think he is going to talk. Don’t give up hope.”
I believe in my heart that Cooper has both of these things happening. He physically can’t talk and then underneath that he has Autism. We have to break through both and that is a big freaking mountain.
First, we need the desire to talk and THEN we need the ability to talk.
I was kind of shook up after all this hope was thrown at me and I made a sorta nasty comment to Jamie about it. Something like, “enough is enough. Geez, that guy never stops!” Jamie looked right at me and point blank asked, “you don’t think Cooper is going to talk? Ever? Like, ever?” I just stared at him. I wanted to say no. But, I just couldn’t. He still has hope. Who am I to take that away from him.
Then, I walked away and self reflected. When did I turn into this person?
I lost my hope after ALL of the horrible therapy appointments. And after the diagnosis. And after seeing other children. It just left. TRUST ME when I say I want to be proven wrong. Please GOD prove me wrong.
I can’t operate at that hopeful level anymore. I am at the realist level. Don’t confuse that with negative. I am probably the least negative person you will ever meet. I just can’t waste any of my precious energy thinking about that day when Cooper will say mom. I have to focus on the right now. The every day. Teaching him to hold a spoon and put his shoes on. My hopes involve getting him to poop on the toilet. Right now, that would be better than anything.
I would encourage you to think more about approaching autism as something to “break through.” Many autistic adults strongly feel that there is no “hidden them” inside. there is no “real” child inside the “autistic shell.” The real child is right there, an autistic child, whose autism can never be separated from their identity, because it is a neurological difference that cannot be undone.
Only God knows if Cooper will communicate verbally, but you may find comfort remembering that verbal communication is not the only kind of communication. it is the easiest kind for parents. there are many non-speaking, but COMMUNICATING autistic adults. They are intelligent, interesting, and they have a lot to say that can help parents in just your situation.
http://emmashopebook.com/2014/05/01/dare-to-hope/
http://emmashopebook.com/2014/01/08/how-we-got-here/
http://idoinautismland.com/
http://emmashopebook.com/resources/
My NT four-year old girl will not poop on the potty. It is very stressful and sometimes infuriating. It will come, though.
It’s hard when you are knee deep in the trenches so to speak. People will mean well trying to say the right thing but unless they live it day to day they will never understand. The upside is I can see you are focusing on trying to set up Copper for success by teaching him life skills one task at a time. It’s important too. Motivation is EVERYTHING for kids on the spectrum. The “want” has to be there…..I remember when my son was 3 and and was in many ways doing things by himself and avoided situations where he had to try and communicate. I ended up making things hard on purpose. I tied up the fridge so he couldn’t get in and would have to get me first. I bought all these clear bins that were hard to open and put his favourite things in so he would have to interact with me and try and use pecs to communicate. I became the treasure keeper who had the key. Did it frustrate him? Yup. Did it push him out of his comfort zone? Yes. Did he get mad at me? Yes. But he was now motivated and found out quickly if he at least tried to interact…..then boom the toy he wanted was in his hand super fast. Take care
My heart really breaks for you reading this post. It does wind me up so much when well meaning friends say happy, positive, yet completely naive things about the Pickle, or autism in general. Because they ‘heard something’ or ‘know someone’. I get really hot inside and want to scream at them “if you walked in my shoes you would feel the same way as me!” But I normally just smile and say ‘hmmm maybe’.
Hugs x
Hi there…Yup, I still get comments like this. I actually had 3 people in the last week ask me if he will ever be potty trained. Or talk. Or whatever. It’s like, yes, let me get out my crystal ball and find out. I know they mean well and care but it’s just hard. Hugs to you too.
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