Autism: Losing Hope Is Not a Bad Thing
June 30, 2016
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Now Reading: Autism: Losing Hope Is Not a Bad Thing
June 30, 2016
(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.
Written byFrank Campagna
I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).