Thursday, July 5, 2012

My Son w/ Severe Autism Is Happy. Isn't That The Most Important Thing?








(originally written & published on July 5, 2012)



You all know I'm not a big fan of autism. That's been well established.

I already wrote about how I don't think it's a gift from god. (you can read that HERE)

I wrote about how, in my opinion, the autism parents who say they wouldn't change their kid if they could / take away his autism are a bit delusional. (you can read that HERE and HERE)

And I go thru stretches where I have MAJOR "grass is greener on the other side" syndrome. I wrote about that HERE.

And part of me is going thru a stretch like that right now. Part of it I think is I'm reading the book by Carly Fleischmann's dad.  (If you don't know who Carly is you can learn more about her HERE)

And I'm reading it getting envious of (a) the resources and money that they had at their disposal and (b) that ABA worked for them and that even before her "typing" breakthrough she was making small steady progress and (c) of course I'm envious of how she can type and communicate her wants, needs, and desires.

As many of you know my 9 year old son Kyle has not made much forward progress (academically & developmentally) in years. I say on here quite often that he has the receptive and expressive language of an 18 month old and he's been stuck their for years.

So I read about Carly and I read about some of your kids and some of the progress that they are making and yes I sometimes get jealous and envious.

And today I was driving to work and I drove past a school where they were unloading teenagers in wheelchairs off a van and into the school. And part of me felt
sorry for these kids but then part of me went to my "grass is always greener" place and I thought "yeah but I bet they can talk" and "maybe they'll hold down a job and live independently".

And then I stopped myself and thought "But I wonder if they are happy?" and then I thought "I wonder if they had to get alot of surgeries or what sorts of medical issues they have"

And for maybe the first time EVER I thought maybe Kyle's got it better than some of them. And I even thought maybe some of their parents have alot more stress & challenges than we do. Heck, maybe some of those kids has life threatening illnesses.

My son Kyle is almost always EXTREMELY happy. He is happily content to just wander around the house munching on popcorn and watching Sesame & Dora all day long.

Outside of the summer of 2011 ("the summer of rage") he's always been pretty happy and pretty malleable and pretty go with the flow. Mr Mellow Yellow.

And the more I read about Carly the more I think that her & Kyle are completely different. Carly was/is prone to lots of violent meltdowns. Carly was extremely intelligent and was trapped inside her body and found that frustrating. Carly knew she was different and hated it.

Kyle? I think what you see is what you get. For better or for worse (and this is hard for a dad to say) I don't think there's an extremely intelligent kid in there. And I don't think Kyle knows or cares that he's different. He's just Kyle.  He shows very little indication that there's a brilliant mind in there.  We're still working on "point to nose" at 9 years old. 

I've said a few times that sometimes I feel like our lives are like the movie "Groundhog Day" and we've been kinda reliving the same day (and raising a toddler) over and over for years.

But ya know what? Maybe that's exactly what Kyle wants. And maybe that's exactly what he is capable of.

And for the most part he's been happy for most of his life. He's had plenty of issues, don't get me wrong. Painful stomach/ constipation issues, "the summer of rage", a dermoid cyst removed from his eye, lots of cavaties cuz we cant brush his teeth, and now seizures to name a few...but for the most part he's been happy & healthy for his 9+ years on this earth.

Now compare that to Carly or some of the even higher functioning kids I read about who know they are different and maybe Kyle doesn't have it so bad.  As long as he stays his happy go lucky self for the rest of his life, who's better than him?

And what about those kids in the wheelchairs I saw?  I'm sure some of them are happy and will lead happy productive lives and I'm sure some of them are miserable and have medical issues that would scare the bejesus out of any of us. So maybe Kyle, through his obliviousness to his situation, has it better than some of those wheelchair kids I saw.

So I think alot of it boils down to me as a parent.  He's happy most of the time, but am I?  Am I happy with this situation?  Would I be happier with a typical kid?

I want him to progress.  I want him to be better.  I want him to be more typical.  I readily admit all of that.  But most of all I want him to be happy. 

Now I'm not naive enough to think that this good stretch we are in with Kyle will last forever.  At some point something's gonna happen or the other shoe will drop and another crisis will fall into our laps. 

But thinking back it almost seems that most Kyle crisises are more of a crisis for me & the wife than they are for Kyle. 

Our school district f--ked up in September and didn't have a placement for him.  And mom & dad were in crisis mode, but Kyle was fine with it.

He had to go under general anesthesia at a hospital for dental work last year and we me & the wife stressed for a week, but Mr Mello Yellow was oblivious to the whole thing in the days leading up to it and did pretty ok at the hospital day of.

Even his seizures last month were more stressful to me & the wife than they were to Kyle. I mean he hates the EEG test, getting all the leads taped to his head was absolute torture for him. But 3 days in the hospital was pretty fun for the king.

I guess if I could go into a time machine and see Kyle as an old man after we're gone and see that he's well taken care of, and that he's happy I could rest a little easier at night.

When all is said and done maybe he's the lucky one. Maybe we should all live an oblivious life. Sounds good to me. Sign me up! ;-)

As usual. I'm rambling. This is all over the place. I'm gonna end it here...And the title of this is really stupid. If you can think of a better title please suggest it.

Thanks.

Over and out...

THE END


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39 comments:

  1. Today he's happy and yesterday he was happy most likely tomorrow he'll be happy. Happy is no small thing and is something to celebrate (hey we get the cheers for the smallest of things it helps sometimes)

    Jennifer

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  2. AD, I totally get what you are saying. I often feel so guilty because I want more for my two. I often feel jealous of how easy a lot seems for you and your family compared to ours. I have a 2 and 3 year old both very high functioning ASD. They seem typical to outsiders, but if things are not "just so" then we have major meltdown. I get all the lectures from what I hope are well meaning strangers about how to better parent my two. All I want at the time is for someone to hold the door open for me and maybe push my cart to the car. I know both of mine will know they are different and I don't know how they will feel about it or deal with it. Thankfully right now I can also say mine are happy most of the time. Enjoy it. Relax in the good times. We all know the bad times are stressful enough for all.

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    1. I know how you feel. I don't underestimate how hard it is for parents of lower functioning ASD'ers but sometimes I think it would be easier if my son was a bit lower functioning - that way the school parents wouldn't despise him for hitting out at their children, people wouldn't look at me and wonder why i'm not disciplining my child when he is running around like a madman at the shops. Cos "he just seems too normal to be autistic". It makes it hard sometimes. And at his age he's just started realising he is different to his peers, and has different rules at school to his peers, etc, and i'm finding this a bit difficult to deal with!

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  3. The title is perfect. It got me to read the article. Great article as usual. Thanks for sharing! And yes, I think that is the most important thing!

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  4. I am sorry but I am one of those parents that is okay with my son having autism. I love my son, but he does have his meltdowns, but school seems to be helping him get to his milestones. But we also have him on medicine to help him calm down and be able to focus too. The medicine we have him on also help him have peace within himself too. So my son is almost four 40 lbs and 3 foot 2 inches and he is on 1 1/2 tablets of Risperidone each tablet is 0.25 mg. which he takes in the morning and then one tablet of guanfacine which is 1 mg at bedtime. But with those two if we could get him fully talking you would never know he had autism. But that is okay because with our school they planned a classroom around my son to help him which if he knows you he says a lot of words.

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    1. I'm sorry I don't understand why you would prefer your son to have a more difficult and challenging life. I can understand you may not want to change your son's personality, I would want my son to keep his personality but I would want to remove all that stress that Autism causes him. I wish that he didn't have autism so his personality could shine even brighter and that he could do the things he loves that autism currently prevents him to do. I want him to reach his true potential that autism prevents.

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  5. I love the title...Sometimes-maybe all the time we have to let happy be enough. I have been having a few rough days and feel very alone and isolated. I have 3 kids with fragile x and yesterday was just not an easy day and I found myself saying "i just want normal" but this is my normal...Most of the time things are great but there are those times where its just not easy..

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  6. I <3 you. I love your honesty. I hope you continue blogging, it helps me come to terms with my son and how "the grass is always greener on the other side."

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  7. I love my grandson the way he is and he loves me the way I am. I Have 11 grand kids and Elijah is the only one with autism. He holds just as big of part in my heart as the others ( Maybe a little more ). It's like he knows what I'm thinking. If I need cheered up he always puts a smile on face and gives me hugs and kisses. He is 6 years old and has severe autism

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  8. Wow. Sounds like my son, Willie. Just turned 10. He's been stuck at about the same level developmentally since he was 2, but damn if he's not the happiest person I know. Even when he's smashing our stuff, well.. especially when he's smashing our stuff.

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  9. Just remember, ALL of us parents feel that way, that the grass is greener. Even with NT kids, the grass will always be greener. There will always be kids better than our kids in one way or another. But the flip side is always true too.

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  10. I also love your blogs and it makes me feel like I am not alone in all this..I have a 4 yr old non verbal autistic son who also was diagnosed with epilepsy when he was 2.. It's def been hard but I have learned to accept the cards I have been delt and I live my son with all my heart I just try my best to help him:)

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  11. You verbalize what many of us have thought, and still think. What is life like on the other side? I have looked at friend's kids and wished my son had friends, wished he was typical, wondered how much different it would be as a single Mom if the constant turmoil with homework wasn't present. My son is high-functioning yet has gone through some of the same things Kyle has and you are right. As parents, we worry about 2 hours of dental surgery, EEGs, more needles, and now surgery on both eyes in a couple of months. Unfortunately, though, my son is all too aware of the blood draws, the glue in the hair, the stares. It breaks my heart. I pray to God he finds a friend who will look past his eyes that wander out, his facial expressions that aren't always appropriate and see the special person he is. Keep writing, AD; your words are refreshing and today brought tears to my eyes...have stressed about the same things. I look forward to seeing your next blog. Keep up the great work.

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  12. Yes, the grass may look greener but when you get there it has just as many weeds. James is very verbal, in a typical classroom, doing very well academically but he is also constantly conflicted and has a LOT of anxiety because he is teetering between both worlds. I can't really say he is happy most of the time. He certainly has happy moments that may turn into happy minutes and sometimes happy hours. However, overall, he is on edge which means we are all on edge in our house throughout the day. He is a great kid who works very hard and yes ABA has a lot to do with his success. However, take away the structure of the ABA and he can be in crisis mode and take us all with him. Some days, I just wish for HAPPY.

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  13. Like so many others who comment here, I read your blog to know that I am not alone. My son is only 2.5 and making slow but steady progress, but I find he starts doing things (like waving a year ago, and blowing kisses 6 mos ago) and then just stops and has no clue what I am talking about when I try to prompt him. Your story of regression terrifies me, but I am afraid to share it with my son's father b/c he is always blaming me and expecting the worst. That opposition keeps me stubbornly optimistic... But I love my son no matter what, and it is indeed his happiness that matters most to me.
    Thank you for your blog; it helps me a lot.

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  14. I admire you very much. You say all the things other parents think but wont dare say for fear of being looked at in an awful way. DO I wish my kid had Autism, absolutely not. I don't wish for any child to endure struggles of any kind let alone those of ASD. Those children with physical disabilities may not al be able to talk, but those who can, while physically limited, at least have the option of communicating pain or frustration. Where our children are unable to express feelings or pain. My 3 yr old has made leaps and bounds in the last 6 months since his diagnosis, but he's still not at a 3 yr old level. He's gone from 11-13 month range to 24-27 months and he's 38 months old. And this doesn't mean his appetite for school and socialization won't change. He still has very severe reaction to everyday typical things, air breaks on his school bus make him run crying. A loud truck, the vacuum cleaner or the smoke alarm going off if we burn dinner a little all of it makes him fall to the ground and into the fetal position and bang on his ears with his fists. And times like that I feel like he'll never be able to function in society properly. It's never easy being a the parent of a special needs child. But for what he has (because Autism is not who they is, your or my son) he seems happy and maybe that IS all that matters. We have to push our son so much and he really resists sometimes and it feels like he hates us. Although you have an obvious dislike for Autism, you don't hold it against him. You can clearly see the love you have for Kyle, ASD or not.

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  15. You are such a great dad!

    I love your writing. I think you really express all those emotions well. I can relate to most of them.

    I wish I could be as happy as my kids are. I feel like a miserable person most of the time. And I know I worry enough for all of them put together.

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  16. Is nice to see a daddy blog and see how caring you are for your son and showing how you feel . I have a forums for mums and dads and nanny and grandads and auntie and uncles if you would like to join to talk to other parents : http://yummymummys.myfreeforum.org/

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  17. Be thankful for the happiness. My boy had that once, and those memories, of him during that time where literally everything cracked him up with laughter are what sustain me today. Best of luck with your beautiful boy. He's lucky to have you.

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  18. As usual, you hit the nail on the head, dude. Part of having a human life includes some suffering, and no one can escape that reality, but he's got a pretty darned good life going.

    You also talked about what I REALLY think is the pink elephant in the corner that few parents with ASD kids will address: Intellectual Development Disability (IDD, formerly labeled as MR/Mentally Retarded). Some kids won't progress much not just because of the autism, but because they have an IDD. I'm sure everyone here knows that often IDD and ASD are a package deal, but most parents now accept and discuss their kids' ASD..but not IDD.

    Yes, happy IS IT! Savor the moments, live for today, and don't spend too much time in the past/future. That's how any person could improve the quality of life, IMHO. ~Zennifer

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    1. Let's not forget Carly Fleischmann was labelled as with Severe Autism, and MR. And she has now proved a lot of research that has been done on severely autistic children to be wrong. I'm not saying that all children with severe autism have the intelligence level's that she has but I do believe that we shouldn't undermine them and completely rule out the fact that some of these kids may be incredibly intelligent, but just don't have a way of communicating?

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  19. Maybe that little seed of envy is what spurs us on to educate our kids and help them achieve all they are capable of? There comes a point tho, when we have t stand back and ask ourselves if we are doing it for the child or for us.
    My own little autie dude is the happiest camper in the world, and is mercifully unaware of his differences. Like you guys I literally worry myself sick over him, and he is in blissful ignorance of it. And they say HE has problems lol XXX

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  20. I hesr you completely. My daughter doesn't seem to really know she is different. There are definitely times she is happy. But she is also the moodiest child (and was the most unhappy baby) I have ever known. She cries a lot and we have no idea why. (yes we have tried absolutely everything under the sun to help her). She is very hyper and agitated a good deal of the time. Unfortunately she does not tolerate any of the meds that could potentially help with that. She has seizures too which her doctors feel caused actual brain damage, she gets migraines, she is non verbal, she regresses, she too has made no progress for years. I think the people who wouldn't take away the autism are crazy. Do you love your kid just they way they are? Of course. But to pretend like it is a-ok, well, then you are not dealing with what we are dealing with.

    I envy you his happiness. Truly that is a gift

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  21. my name is randi, my son is one of those kids in the wheelchair, and yes it has been crazy sometimes, but my son is pretty happy. i often think about what life would be like if my son was not autistic, but then i look at my 3 girls, they are normal kids, they lie, they whine, they never seem to have enough, and they never shut up!. so it is nice to have one kid who is content, who doesn't lie, and who doesn't want everything they see. so i am not delusional, i am just content and grateful, i have learned how to do this. learned how to make this work. and it's ok

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  22. I agree, if he is happy then I can handle the rest. Infact my day is based off of him waking up his normal peaceful self. I love my son like crazy. Autism is a very real parrt of him, I don't know who he would be without his autism. But I would love to see him have the chance to shine. I would love to hear his thoughts, to know that he knows how much I love him. The truth of the matter is yes it is selfish in some ways because that is all what I want but Ryan like Kyle is sever non verbal autistic and lives in his bliss, and I will live forever playing his games and doing everything I can to see that smile everyday.

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  23. happy sounds good. i read to post, the title is great. I'm a Dad of a 7year old girl with autism. Mine is awesome - she's in a swim team, two shark (level-6) swim classes, participates in piano recitals, has a fun gymnastics class, and really loves ballet. We are teaching her how to deal and work with kids and learn various rules of her lessons.

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  24. may god help us all and give us the strength and wisdom to care for these gifted kids.

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  25. Hi
    I signed up to reading ur posts whilst my son was being assessed for autism... Today we had a disgnosis... ASD! Not unexpected, I'm a autism girlfriend, daughter, sister and now mommy! I've seen autism in at every age group. My boyfriend is blissfully happy in his asd life... As is my dad and sister.. My son however I'm not so sure.. He is non verbal.. Currently.. Destructive and aggressive.. Everytime we leave the house he screams.. Goes for hours and hours without food as he won't eat anywhere but at home.. I pray for some sign he happy! I hope one day I'm as lucky as u are to see it in him.. Thanks for posting.. U keep me focused! Because in my totally asd life I need focus!

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  26. My son is happy as a pig in shit when he is home. He squeals with delight watch Wiggles, Barney, Shari Lewis and Teletubbies on Youtube. He is almost 17. My husband and I would be beyond sad when we would see a group of boys walking down our street, riding their bikes or riding their skateboards. Tears of sadness for what Tyler was missing. Did he care? Nope. He runs into the house when we pull in the driveway or he gets dropped off by bus. Never happier to be home. I've learn that he has his own happiness his own way. Why be sad when he is not? He doesn't miss what he doesn't know. It's hard being neurotypical and trying to see that his life is happy just the way it is and it's not our idea of happiness. (((extra tight hugs Autism Daddy))) love your blog.

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  27. I have looked for a while for a blog that wasnt " my child is great and i wouldnt take away the autism".
    A breath of fresh hair to hear someone saying what i am thinking .
    If i could do anything to take it away i would. If not for us but for our children. Everyday is stress and anxiety. A life full of worries is not what i want for them

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  28. Shit I'm glad I found you. I thought I was the only parent out there who HATED the whole 'autism' thing. I'm bitter dammit. Let me be bitter. Someone said to me recently 'at least he doesn't have cancer'. Well thank you very much...and get stuffed.

    Phew! Sorry, mini rant there.

    Thanks again, I'm enjoying your writing very much.

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  29. Spot on brotha .In terms of my son to his ASD,we have always said "ignorance is bliss"

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  30. That's what I focus on, and honestly that's why I believe that autism is not a "tragedy."
    It's hard. It's not fun. It's scary. It's a roller coaster...but most of those emotions are for the parents
    My ASD son is 3 years old and he's still around 18mo. Development. But he is an incredibly happy kid. He has his moments, sure. But we can't change our children. Wishing we could change them only creates resentment. Happiness is a true gift. No matter what, if your child is happy, it's always worth it.

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  31. It really, REALLY bugs me when I hear parents say "they wouldn't change a thing" about their child having autism. I would do anything in the world to make autism go away or find a cure. Anything I could possibly do to make my son's life easier. He is not who he is because of his autism. He is who he is (a wonderful, loving, kind little boy) DESPITE his autism.

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  32. Autism Daddy I am glad you post your true feelings and concerns. It makes it easier for us to reconcile our own feelings. I think what makes it hard for US autism parents is that our kids look typical. My son is very handsome and not just saying that. But it makes it hard even knowing his condition, to not expect him to be better. More typical. Does that make sense to anyone else?

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  33. I have to say I wish my son were happy. He is high functioning and fully aware that he is different. He is 6 and his psychologist has said she has never seen a child who has anxiety as high as he does. The anxiety is what limits him and causes many of the meltdowns we experience as he is living in a world he is terrified of. I would take his autism and anxiety away if I could. To allow him to do the thing I know he longs for but will not try. So that may be I wont have to worry that someday he would take his own life because his anxiety has turned to depression. In many ways our kids all have their good and bad. One who is labeled as severe may in reality have it easier then one who is high functioning. Speech seems to weigh a lot on the label our children get but although one child may be verbal doesn't mean they function in the world any better then one who can not. My son is 6, he is considered high functioning however he can only walk down/up a flight of stairs on a certain side because it is different the other way, he tries to plan his entire day in advance and gets extremly anxious and nervous if it does not go his way or if we tell him he needs to stop, he has trouble going anywhere new without a bunch of advance prep work letting him know who he will meet etc..., he once had an hour long meltdown at a doctors office because she gave me papers to fill out this time which she never gave me before. Life in our house is stressful because we can never get a babysitter and if he gets to upset anxious he will physically vomit everywhere. Every noise, every sound, every unkown sends him into panic. I wish I could take the autism away everyday because living like that is not living.

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  34. Thank you. This was a reality check which came right on time.

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  35. So true. Thanks.

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  36. My son Philip, who is also 11 and non-verbal, wrote you a letter in response to your post today. He says you are a good dad. http://faithhopeloveautism.blogspot.com/2014/07/letter-to-autism-daddy.html

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