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” :-).
19 People Replies to “Autism: Losing Hope Is Not a Bad Thing”
Totally understand! When our son was younger and we were more naive and gullible I would check every "cure" that popped up in the media! Swimming with dolphins…… a cure for autism?! Will it help my nonverbal kid communicate and be less frustrated? Back in the old west they were called Snake Oil Samesmen! Our 29 year old young man is happy and healthy in Texas and may or may not be able to speak in complete sentences someday. We just keep on keeping on!
Not to be simplistic, but you and your wife are great parents. As a fellow ASD dad, I know how much strength, humor and patience it requires. You never have to justify your approach. As long as you feel you are doing what is in your son's best interests, the rest is just noise.
As you said, it's not going to prevent the King from talking or not talking one day. None of us know what the future holds and what our kids are capable of.
Keep up the great work. You inspire many of us.
Normally, I don't leave comments, but Biomedical treatment? We have 3 children with Autism. I found a lot of great information from the developmental pediatricians out of Hershey Medical Center, and CHOP- Children's Hospital of Philadelphia. Autism, Epilepsy, Alzheimer's & 2 others are on the same chromosome. CHOP & UCLA came out with the same findings. Now, on a personal note, I switched to organic foods, I clean without chemicals, watch what kind of clothes I buy, rugs, flooring, even kitchen cabinets, and absolutely no fake Christmas trees (VOC can affect everyone, especially people with autism), and even cosmetics -soap, shampoo, etc. It is not a magic bullet, but it helps sensory, behaviors, speech. We moved from the Poconos to Maine for better water, less pollution-even Vermont & NH are cleaner, quieter. Its the best thing we ever did. You know what is best for you and your family. You do what you have to. Best of luck, I think you're doing great 🙂
Heal the gut, reduce the inflammation, yeast and viruses, then healing can occur. Look up "biomedical treatment" or "DAN doctors". They can help.
Thank you for sharing your acceptance of your son for the person he is now. We all have limitations and flaws. We accept our spouses and friends with their flaws. If we are always looking at our child with "hopes" for new skills and abilities instead of appreciation for who they are, we are rejecting them.
We can pray, ask the universe, whatever faith we might go to, but this is our kids' journey, not ours. I think we have a plan when we come into this world, and we can teach our kids as much as we are able to, and guide them, but they are individuals. Who are we to judge if the plan doesn't look like what we thought it would. We are living this life to help our kids, and our kids are busy living. The most important thing is to love, support and honor who they are. Happy, loved and healthy is a pretty good life, with words or not.
I m able to empathize with your feelings..its OK to say whatever to whatever..it indeed hurts to see that you have been hoping and praying for long but to get nothing
But I believe. "a person has hope till he has any breath"…keep some light of hope in you, it might create reality one day..but don't give that hope to realise a time limit
I think people forget that even if a person doesn't speak, they will learn other ways to communicate one day (hopefully). I had a friend ask me how long will he have autism. �� Answer: forever. I do hope that he will find his perfect way of communicating to you guys. My son is limited verbally, but I'm just happy he has learned to communicate through drawing pictures, learning to spell, sign language, AAC device, PECS, etc. It took me years before I accepted that his autism and apraxia may prevent him from ever having a full verbal conversation with me. You're an awesome dad for allowing your child to be happy just the way he is. He is blessed
It's the sad reality of our situations that we need to come to the realizations that not all our kids are going to be Temple G's or other high functioning autistic people, that their lives (and ours) will never be the so-called "normal". Does that mean we'll stop trying – absolutely not. Managing expectations though becomes an important part of our lives, helps keep our sanity and we become more strategic how we spend our money and resources.
Set realistic goals, revel in the small victories and accomplishments. Take what you get and perhaps aim just a little higher each time. When the funk and depression sets it, ride it out and focus on those victories.
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.
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.
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.
Good job keeping it real A.D.!!
Perfectly said. Exact same feelings here about my 14 year old. stay sane!
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!
"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.
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.
This applies to so many things, and if you don't learn it, any child will drive you crazy, if not a spouse.
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.