(originally written & published on June 30, 2016)
Earlier this week, I published the following picture on my Autism Daddy Facebook page…
I only added that last line “boy I wish he could say that!) because I get new followers all the time who dont know the king so I wanted it to be clear that my son didn’t say that and couldn’t say that…
But because I added that last line the photo went kinda viral and reached a lot of people. And I got a lot of comments.
And quite a few of them were things saying “don’t give up hope” “he might talk some day” “he might surprise you” “keep the faith”, etc, etc.
Well I’m here to say loud and clear that I don’t have faith that he will talk one day. I don’t expect him to surprise me.
Basically, I have given up hope of my son ever speaking.
And I think that’s what keeps me sane.
When folks innocently ask me “Do you think your son will ever speak?” I just smile and say “Nope. I don’t think he ever will.”
They are usually taken back by the answer, but it’s true.
Now, I didn’t say that I’ve given up hope that my son will ever communicate, just that he won’t speak
He’s now 13 years old. And he’s completely non-verbal with autism & epilepsy. And, yes, I have given up hope that I will ever hear words coming out of his mouth.
I don’t think that makes me a bad parent. I just think that makes me a realist.
If I was still holding out hope that he would speak I think I would be losing my mind.
Every once in a while someone on my page will say “my kid didn’t start talking until he was 11” and I get hopeful and I want to immediately email them and find out what the magic bullet was for their kid that starting him talking at such a late age. And then I start going down that rabbit hole of having some hope, and it never ends well. It ends with me in a funk and depressed.
So, me not having hope keeps me sane.
I got a few other comments to the effect of, “God can do miracles” “Keep praying”
And I’m not a religious man, but if I was, the idea that I should keep “praying” for speech and “He might surprise me” would have sent me away from religion a long time ago. If God hasn’t answered my prayers for the first 13 years, why should I keep praying?
Now all of this doesn’t mean that we are still not working towards speech. We are not giving up on speech therapy at his school. But, maybe we are not fighting at his IEP meeting as hard as we would have years back to get 5 speech sessions a week at school instead of 4. And we are ok if they focus more on communicating with a device versus trying to get words to come out of his mouth.
We just want him to be happy. And for the most part he is happy when left along and not bothered about trying to speak.
And every once in a while a family member will say to him “C’mon say_____. I know you can say it!” and I get frustrated on behalf of the king. Can you image someone saying to you “C’mon speak Swahili. I know you can do it!” You’d want to punch them in the face.
Anyway, that’s all I’ve really got. And please don’t take this blog post to mean that I’m upset at folks for writing those comments… or that we are going thru a particularly rough patch with the king.
Also, don’t take this blog post to mean that I think that having hope is a bad thing or believing in prayer is a bad thing.
I just felt the need to write this because I felt that it’s really important to say that giving up hope is also not a bad thing…
I also don’t think that me giving up hope is keeping him from speaking.
And if my son does one day speak I will be thrilled and surprised, and I’ll probably find some God to thank.
But for now, I’m just living my life trying to keep him happy and myself sane.
THE END
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I perfectly agree with your reasoning. My son does speak some words but his development is nowhere where it should be and at 13 years it does keep me sane to keep my feet on the ground now. Also struggling with seizures here and they don't help either for any progress I believe.
This applies to so many things, and if you don't learn it, any child will drive you crazy, if not a spouse.
maybe...since he undoubtedly knows what goes on around him....he just thinks there really isn't anything worthwhile to say. sometimes i feel like that, then i get yelled at for not talking.
"Hope" was in the Pandora's box of the world's evils for a reason. There are many situations that would have been resolved much more quickly, had the participants abandoned their forlorn hopes.
I feel exactly the same way. My son is 5.5 years old, ASD and nonverbal. I have accepted that fact that he isn't going to talk. And that doesn't make me a bad person or even negative. I can't handle the....'someday he will talk...' comments anymore. I am a realist. I am accepting my son for who he is and adjusting our future. Thank you for this post. I shared it on FB and my blog. It's ok to be real and honest and not wrap it up in a fake package. Hugs Autism Dad!
Perfectly said. Exact same feelings here about my 14 year old. stay sane!
Good job keeping it real A.D.!!
I'm with you.... there are still times that I still question if my 4 yrs old has autism. I think it's my mind trying to find doubt, or hope. Whatever it is I do get a little depressed... I try not to go under that rabbit hole because it sucks. But the other days where I'm accepting, I think we all have better days. I still have struggles. Just not on a daily basis as I used to.
When our son was younger he didn't or couldn't speak and he got so frustrated that he would scream this ear-piercing shriek. After working on one word for 6 months ("pick one word and just work with that one word" that was the advice....no progress) one of the people at the school said "You just need to give up on the fact that your child will ever be able to talk and you need to just start using sign language". I cried rivers after that conversation but I took the wisdom from it that our son was good with his hands and sign language gave us a way to connect and for him to get what he was saying across. The first time I tried it I am pretty sure he thought I was crazy. But I explained using words and gestures. The first time he used sign language and got his point across his giggle was the best sound I could have heard from him. He was happy and we were able to understand him. We all have different ways of communicating and sometimes it just isn't through words. Our daughter sang before she spoke because sometimes people can sing but they stutter or can't even get anything across if they try to talk. As long as he is happy and the most important part knows that he is loved then it is ok to lose hope in the things that might not be working. Then you can work on the path of something that does. Bless you and prayers for your family's journey.
Thank you for keeping it real. I get comments like, "Oh, he'll grow out of the seizures." Statistically speaking, he won't. We just have to enjoy the life we have.