(originally written & published on August 10, 2012)
People have been asking me 3 types of questions over & over since I started my Autism Daddy Facebook Page & Blog…
1) “How did you accept the fact that your kid has autism?”
2) “My husband is having a hard time with the fact that his son/ daughter has autism. Any advice?”
3) “You seem to have such a positive outlook. How do you do it?”
And I’ve never really answered these questions because either I don’t understand the question or I don’t have the answers.
Let’s start with the first question.
“How did you come to accept the fact that your kid has autism?”
I honestly don’t understand the question. Do you mean how did I accept the diagnosis?
I’ve recounted in previous blog posts how my son started out with mild PDD-NOS and how it progressively got worse until now we have full blown, low functioning, classic/ severe autism. (You can read one HERE)
I accepted the PDD-NOS diagnosis back then because it made sense and because it came with the amazing women who enter your home when you enter the Early Intervention program
Was I thrilled about the diagnosis? No, of course not! My freaking kid had autism!! I’m pissed at it still. (if you’ve been reading my stuff long enough you’ll know that)
But why wouldn’t I accept it? People come in, evaluate your kid, tell you that he might be autistic, and then offer to give you lots of services so that your kid can one day function better, be less autistic, whatever. Why wouldn’t I accept that? Accept that help?
I’ve run across a few people who turned down services because they didn’t want the stigma of a diagnosis, or other people who the “experts” recommended that their kids “were low toned” or “slightly speech delayed” and could benefit from some speech, or OT, or PT. and these people turned them down. “My kids don’t need that?”. Maybe they don’t but this is part of what your taxes are paying for! Why wouldn’t you take a nice woman coming into your house to play with your 2 year old for 45 minutes a day?! And help them progress!
So yes, I accepted the diagnosis with no problems whatsoever.
Now how did I deal with the fact that my kid has autism? Depends on when you asked me that question. It almost feels like when the wife is strong, then I’m weak, and when she’s weak I’m strong. What I mean by that is when one of us is going thru a hard time with whatever autism is throwing at us that month, the other one is there to say “it’ll be all right. we’ll get thru this.”
In the beginning I might have been dealing with it a bit better than wifey. Then she was up and I was down, and back and forth it goes thru the past 7+ years. Each one of us supporting the other, getting them thru the next crisis. Once in awhile we’ll both be up at the same time and both in great places and all is right with the world. And sometimes we are both down at the same time and that’s a scary time…
Currently since the seizures in May, I’ve been down and she’s been up and my rock telling me that he’s doing great and that I worry too much and to stop worrying about things that are out of our control.
Now on to the second question I get asked a lot….
“My husband is having a hard time with the fact that our son/ daughter has autism. Any advice?”
Me? Advice? I don’t know what kind of advice I could give you. As I’ve already said I’m still having a hard time with it and I’ve been dealing with it for over 7 years. I said in another old blog post that not a day goes by when I don’t see a typical father & son interacting somewhere and I hurt. And that is still true.
But I’m a big proponent of dealing with the hand you’re dealt. Yes I’m still having a hard time with it, but he’s my only kid, I love him, I love my wife, so this is my life, for better or worse…
Now if I had other typical kids maybe I’d be different. Maybe I’d be one of those dads that only want to hang out with their typical kid. The dad takes the typical daughter to soccer and band practice on Saturdays (every Saturday) while the mom takes the ASD son to special needs swimming & art class. Maybe I’d be THAT guy. That wouldn’t surprise me.
But as I said in a previous blog post, we were afraid to have other children cuz we didn’t think we could handle 2 Kyles, so we chose to not roll the dice, and stuck with just Kyle. So he’s my guy.
And in a strange way maybe if Kyle wasn’t so severe, if he was a lot closer to typical I’d have a harder time with it. I can somewhat understand if your kid is so close to typical, but does some crazy/bizarre things, how frustrating that could be. And if my kid was like that, I might be a dad who would have a hard time with dealing with that… But thankfully 🙂 Kyle’s an open & shut case of classic autism.
So that brings us to the 3rd question I get asked a lot…
THE END
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It was said to me recently that the grieving process is said to have 7 stages. However when it comes to ASD rather than the final stage being "Acceptance" it should be named "Adjustment" as that is what parents/families of a child with ASD do... constantly adjust, day by day. I liked this, and felt it was so true.
I don't know that it is about having a positive outlook either, more like loving our child/ren so much that we are POSITIVE that we will do all that we can to give them every opportunity available to them, just as we do for a typical child.
I asked my husband last week if he ever wished our son was "typical" - his answer, "NO WAY, Autism ROCKS!" I am not sure that would be true in all cases, fortunately our son is mostly happy, loves cuddles, is coping with changes in routine and has no other medical concerns. We are very lucky! All the best :)
'Adjustment' I like that..adding it to my Autism vernacular.
Autism Daddy - you rock! You are honest! The 24/7 stuff you deal with is exhausting, in every way. You are surviving in the best way you can. No-one can live your life for you, nor your wife or son's. Keep on living honestly. And writing honestly. Thank You!
agreed ...
I cannot explain how much I love reading your posts! My son has Autism and your thoughts make me feel like I have a friend out there:). You also remind me a lot of my husband, and hopefully you're providing some insight into his thoughts! Keep fighting the good fight!!!!:-)
I can tell you now that there are many things difficult about having a very high functioning child with autism. My 13 year old, who looks about 18, is extremely high functioning but not Aspergers. I have never been sad about his Dx, but I do get concerned about his future life. Will he want to live on his own? Will he be capable? What if he wants to get married? (So far he says he's going to take care of me, so I hope things stay that way!) And he is in a regular classroom doing grade level work, only with an aide, so what about a career? He is so smart--near photographic memory, an amazing artist, currently he's learning to write and speak Japanese! But how do we channel these abilities into a career? I don't want him to be a greeter or bagger at some store! He could be programming computers or working for the military or be a graphic artist! But how do we get him to develop the social skills needed?
Honestly, of my 4 kids, he's been the easiest to deal with in behavior. He loves routine so he does everything he is told by us without question. He was the easiest baby by far because he would sit quietly and line his toys up all day long.
But I also know that we got the best of both worlds, because we have a child who is aware of what is going on around him, when he chooses to be. And he is incredibly affectionate and protective.
We all know that no two people with autism are the same, and we each face our own journey. I am truly thankful for mine!
I think I can say that Mum to Charlie probably has more of a similar experience to us than many other parents do, just from what little she wrote, but I am glad to be able to encourage the many friends I have made who are parents of children with autism.
I love your honesty and your bravery. I think there is a lot to be said for the place you describe you are in now- a lowering of expectations, I guess that just allows what happens to happen and you to be in the 'present'with your son. you are clearly committed to your family heart and soul- which many of us who admire you can also relate to. I look forward to your next post :)
I LOVE YOUR PHILOSOPHY ON THIS!!!! Our son, who is very much like Kyle, is severe/classic autism and this is the key to happiness! We are SO done trying to be ABA therapists with him...we just want to be his parents and enjoy him where he is right now. We are so much happier and so is he. Its okay to leave the therapy to the school and in home support. Our son is turning 10 next month and we are so exhausted in trying to "fix" him and its not going to work. It made us tired, frustrated, and it just didn't work. Thank you...I'm so sick of the Jenny McCarthy idea of autism. It isn't going to be a "happily ever after" tale for us. Its frigging autism people!
-Jen
Thank you anonymous mam. This is right where we are. Zack has severe autism too and we have given up trying to fix him too. If he only wants to eat crisps and biscuits we allow it, but can get multi vitamins into him daily. He sits for hours pausing and rewinding his beloved dvds. It used to cause so much stress but now we've accepted that that is what he LOVES to do it's so much calmer in here. My little boy has a diagnosis too so this time we are so much more chilled out! I love my two special boys but if I could change them I would. I also find all of these 'therapies' a waste of time and find it so upsetting that it seemed to work wonders with some kids! Anyway sorry for rambling. Have a good day xxx
Well said jen, I totally agree, Sometimes there is no happy ending just the life you make it.
This was a great read, thank you! Our daughter is 28 months old. Back in December when she was 20 months and her brother was 4 months old Early Intervention did their assessment. I did have to get talked into calling them at first, I didn't see the problem w her other than her tantrums and over all attitude. I just thought she'd talk when she felt like it. But at the end of the assessment they tell me she has 11 out of 20 red flags for autism and that she uses language at an 8 month old level and understands at a 5 month level. I could never put into words my shock at that moment and for months to come. She sees her developmental teacher 2x a week and a speech therapist 1x a week. Her brother is also showing delays. Ive been told if she is autistic, studies show based on his current delays, he has a 95% chance of also being autistic. We wanted more children, but at this point we need to focus on helping the babies we have and not risking spreading ourselves even thinner w a third child.
It is all an adjustment ALL of the time!!!! Dealing w that original assessment, learning to have strangers in and out of ur home, the heartache of knowing this is all the bigger our family will ever be. I LOVE Jul's DI (developmental instructor) and I truly believe she cares deeply for us. We were struggling to get an appt for an autism evaluation, the wait lists are unending!!! Her DI said, (which is against the rules!) I am almost certain she will be on the spectrum. Do. You need to rush the diagnosis? Just enjoy ur daughter. As long as she is diagnosed before her 3rd bday, all is good.
This meant so much to me!!!! Her DI is a behaviorist at a local elementary school, I consider her my autism expert (if such a person exists!) I cried hysterically all weekend when she said it, but I needed to hear it. I couldn't stand the feeling of complete limbo for 6 months!! Having said all of this, my baby girl has an appt at CHOP in mid Sept. and I am certain when they officially give me a diagnosis I will begin the grieving process all over, although hopefully acceptance comes quicker.
I also greatly admire ur relationship w ur wife. I have only been following you a little over a week, but I already found myself telling my husband what a solid couple you seem to be. I believe you and your wife have a true committed partnership, u both commit to being the others rock when needed! It is a rare find, hubby and I have been together for 21 yrs (since 14 yrs old) we are the very best of friends and still find this to be the hardest road ever traveled.
You and your family will always be in my prayers, may the three of you grow happier, stronger and more closely bonded w each passing year
Let me just say, AD, that I love reading your FB posts and blogs. I think as a parent it is hard to have a child on the spectrum no matter where they are. All things have their negatives and positives - just like life in general. I admit my life would be easier if Deb was just "normal." But then at the same time the things people take for granted in life, I have learned are actually the really big and important things. Thank you for putting yourself out there and letting us be a part of your life.
Julie
OMG I love u so much!! U say what I feel every day. Kyle seems like my Sean most days. Sean is 9 and mostly non conversational. He has lots OS echolalic speech. Lets say I know where u r at with the whole therapy & diet thing. Anyways keep doing what u r doing. We love u!!!