Friday, August 10, 2012

The 3 Autism Parenting Questions I Get Asked The Most. WARNING: You May Not Like My Answers





(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...


"You seem to have such a positive outlook. How do you do it?"

The answer to this one is extremely simple and I've written about it before...  

ANTIDEPRESSANTS!!   :-)

But seriously, I do take them and they've helped immensely.  (I wrote a post about them HERE).  But you know what?  I think somehow I have you all fooled.  My outlook really isn't that positive.  Go back and look at my blog posts.  They're not all positive.  I'd say they are 50/50.  

And sometimes when I do write something positive, deep down, I'm writing it to make me feel more positive that day.  Like my post about the "Top 11Benefits Of Having A Kid With Classic/Severe Autism".  I was having a real shitty day that day.  I don't remember the details exactly, but good ol' autism definitely had something to do with my shitty mood.  So I sat down and turned it on its head and tried to write something humorously positive.

But my wife can tell you, I haven't been very positive lately.  My saving grace is that I always seem to have my sense of humor intact, and I can find the comedy in any situation, no matter how bad it is.

But overall, my outlook on autism isn't all that positive.  As I said in another post, I just try to live in the moment and not look too far ahead and too far behind.  

You know what also helps me have such a positive outlook?  You're not gonna like the answer to this, but here goes...  The less I care the more positive my outlook is.  The lower my expectations, the more positive my outlook is.  What this means is that Kyle has made such little progress over the past 4 years, that if I care less, and lower my expectations of what he is capable of, then I have a more positive outlook.  This isn't easy with having this page & blog and reading about how great your asd kids are progressing.  But it truly is what I need to do sometimes for survival and to have a positive outlook.

I love Kyle.  He is happy.  But I'm done trying to do ABA trials with him, or trying to teach him to brush his teeth, or getting him to use a fork properly, or etc, etc, etc.  I've been trying stuff like that for years with no success and frustrated both Kyle and me.  And then I've felt guilty about not doing this stuff for about a year.  Now I just care less and lowered my expectations, and PRESTO I've got a more positive outlook.  

Now I'm sure that's not the type of advice y'all were looking for....but that's my reality and that's where my head is at right now.  I've always said that we are not "autism warrior" parents.  Now you know it's true.

Anyway, that my newest long rambling blog post.  I've had this post floating around in my he'd for weeks because I have been getting these 3 questions constantly since I started the FB Page in April '11 and I always ignore them, because as you all now know...  I don't have any of the answers....

That is all...

Peace be with you...

Over and out…

THE END

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50 comments:

  1. 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 :)

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    1. 'Adjustment' I like that..adding it to my Autism vernacular.

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  2. 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!

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  3. 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!!!!:-)

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  4. 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.

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  5. 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 :)

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  6. 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

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    1. 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

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  7. Well said jen, I totally agree, Sometimes there is no happy ending just the life you make it.

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  8. 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

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  9. 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

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  10. 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!!!

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  11. Thanks for sharing this. Enlightening. New perspective. And I admire how you and your wife are great partners in raising Kyle. That is really inspiring. I hope my husband and I can do the same in raising our two kids both on the spectrum. As you may understand, marriage by nature is a work in progress, all the more raising kids with special needs. Your stories give us strength and wisdom to carry on. God bless you and your family.

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  12. AD - I totally get what you're saying.

    However, I wanna bring something up to you. You said Kyles made such little progress, that the less your expectations are, the less you care and the more positive your outlook is? Ok to be honest, call me dumb, lol - but that doesn't make too much sense to me.

    Do you ever watch the show "Americas Supernanny"? With the black lady who looks like Michelle Obama lol?

    There was a show recently, and she visited a family with a child w/DS. Not the same as Autism, but struggles are struggles, suffering is suffering and pain is pain.

    I got a LOT outta that show! She said if the parent has low expectations for their child, then the childs gonna feel that and have low expectations for themself. It aired August 2nd. Ima see if I can find it and link it on here for all to see.

    In the meantime, keep the faith! Prayer really DOES change things.

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  13. I am a grandmother now and have raised a disabled child to adulthood. What I used to say is that I never accepted the diagnosis. I accepted my son. At times I remained angry at other prayerful. Eventually I acknowledged the diagnosis, accepted my son and lived the next day. Keep on.

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  14. I hate this life,I often wonder why me have yet to fine the joy in dealing with this as a matter of fact most days I'm sick of it sick of telling people you should except his behavior as the new norm pretend that a kid having a total meltdown in public should be excepted right !!!. Why would I get mad that others don't want to deal with being attack when I don't want to. I have yet find. M anyone who enjoy changing a diaper of a school age child even me. My CHILD,my problem iep or not.

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  15. I dont think we have a choice to accept or not accept that our kids are special needs. Ultimately we have to accept and hope for the best simply because they are OUR kids. Yes my husband couldnt accept the fact that my son is delayed, and did go into a deep depression, but ultimately he had no choice but to live with it and instead of sulking he is doing everything possible to help our child. Its a difficult journey, sure, but its our journey and we have to tread it....

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  16. Thanks for getting some piece of my experience as a parent of a less-severely ASD couple of kiddos. I am not saying it's as hard as it is for you. But different things are oddly hard. EI doesn't know quite what they need, but they qualified for services. No one expected the diagnosis, for either of them even thoguh certain social things were off. People don't believe their diagnosis, (which leads to different questions, like is it "real" and why did I "do" it?) -- but then they don't want to accept that yes my kids act all weird and crazy and when they are tired they might kick and bite and that this is not a matter of "discipline." That they have meltdowns and I can't go to the store or the library with either of them at the moment. Or that when I hang out w/ kids with severe autism, I notice they have the same movement patterns, ways of wandering, and so forth, as my kids- which helps me to understand the complexity. Kid almost seems normal but ain't.

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  17. I know...I am usually ok with my son having an Aspergers diagnosis. But sometimes seeing other families, hearing about what their kids are doing is like a small sucker punch to the gut. I wouldn't trade Alex for anything, and I'm glad that he was given to our family by God. But sometimes, when I read a post about a kid his age trying out for football, or see a perfect family in church, it does hurt, just a little or lot.

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    1. @Anonymous, and sometimes it's about questions like "do I sign up my son for the preschool sports class at the Y while he's still young enough to get some catch-up on how to play these things without it being a big deal that his ability is way behind other kids (and he doesn't care/doesn't get it/ doesn't follow it)-- or do I keep in therapy xyz, and will he need assistance in the class, is it too much altogether"... this is a totally different equation. because my boys are really young people think -= because it is AS and not classic autism- that I'm doing "too much" and should have more unstructured time or whatever- as if I chose it- on the flip side of Autism Daddy's "how do you do it" - I get that but also the "why are you doing that" as though it is a choice to do what my kid needs. I don't know if tha tmade sense but it felt good to write..

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  18. 11 years with the diagnosis and I still get teary eyed, have ostrich in the sand moments and get down right mad. But as you say and I have said from day one My son is my son and no matter what love him to bits.
    We did try for more children and fingers crossed the other three haven't exhibited any signs! ( though 2 do seem to have ADHD)
    New to your blog but have seen your facebook page and I am always intrigued and sometimes giggly by your posts.
    As I tell my parents some days it will be harder than the others and then they grow up and those issues are not issues anymore making way for new ones LOL

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  19. I have a family member who has been diagnosed with autism and i always wonder how my cousins are handling things.. and stumbling across your blog has opened my eyes and my heart to a world i know know nothing about.. thank you for sharing your stories... i just read 5 in a row and will be back to read again.. you sound like a loving father and husband... and i am sure you are helping a lot of people just by sharing your life stories.. :) kudoos

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  21. I so needed to hear this. Because sometimes I feel as though I'm supposed to see my son's Aspergers as a blessing or a gift or some other load of crap that just doesn't ring true to me.

    Thank you.

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  22. I deal with this because I have to not because I want to. It don't bother me when other people,family don't want to deal with my child because most of the time I don't want to,really who want to fight or be spit on or change the diaper of a school age child.The only help I get is @ school and that's because they have to they don't want to and as in one person comment said the iep stop @ the end of the day which mean what it's my problem to deal with my child needs the rest of the day & night do they care that we are up all night or that he spread poop all over the house or any problems that I deal with ? NO!! they have to get pay every hour they are with my child so I have learn that if I be honest my child can be lovin but other will not or want to be attack just to see a bit of love and yes I want badly for someone to fine a cure and I would change this child in the blink of an eye.

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  23. I am learnig from all you other parents about autism because I have no clue about it. I knew my son was differnt from other kids but I didn't have a dr who would tell me what was going on with him. they told me he has ADD/ADHD Bipolar and ODD. Then I pushed a little harder and they told me he has PDD. He was 14 when we learned this. So I am reading all I can and I have found that parents are more informitive then a dr. I have had my son seen by countless of drs and therapist. He was on so many differnt meds that had bad side effects. I tried something one day. I took him off the meds 1 by 1 slowly. I have a son who loves school, friends, family, he has a girlfriend and is learning to drive. He is active in the church youth group and is wanting to run track next year. He can read on a 5th grade level now. When they tested him before school let out he was on a 2nd grade reading level. I have a son. I have a young man who I am learning and getting to know. He wants to be a firefighter and is planing to be a jr firefighter. He has goals and he is an amazing boy. I never knew this boy because of the meds. I thought I had a devil for a child when on the meds. He woke up screaming and went to bed screaming. He ran from taechers, me, and no one could get him under control. I dont know about other parents with the meds. You are the better judgement when it comes to your kids. But as for my kid he will not be on meds. Thank you for your word and your life being shared because I learn from you-all parents with special need kids. Thank you for that

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  24. I love reading your blogs! I am so happy to have found your FB page. You have given me and my husband MASSIVE perspective. We have 7 year old twins with PDD NOS and SEVERE ADHD. They are destructive, defiant, hilarious and full of personality. I knew from birth there was something off with mine. All they did was scream and cry 24/7 and rarely slept. There was no comforting them. So "accepting" their diagnosis was a relief! It was like ok I'm not a bad mom there really is something wrong here. By 3 we had to medicate them for their own safety and had them in school. My husband had a hard time accepting it. He didnt want to beleive anything was "wrong" with his perfect boys. I feared so much that he would reject them but he didnt. If anything their diagnosis strengthened our marriage. He is a wonderful father to our kids and I'm beyond thankful! But he does have days of resentment and states how unfair it is that we lead a good life and our kids are punished with these challenges. These boys are our flesh and blood. They are everything to us and accepting and dealing with their condition is automatic and unconditional.

    Carrie Harmon
    Covington, La

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  25. Hey AD whether you realize it or not that "the less care the more positive your outlook" is acceptance. :) You are in the stage that 'it is what it is' and there comes a peace with knowing that he is who he is and why force him to be something he isn't. I have found it is a back and forth acceptance and sometimes my "acceptance" has short changed my son. Like last week he wrote a word on a piece of paper and we were FLOORED!!! I had no idea he could read and write. It was a very simple word but still he did the process it takes. We never thought he was capable of it and we have not pushed writting with him at all because why torture a kid who may never do it? So we under estimated him. So you have to go back a forth with adjusting your expectations and try to find balance. But that stage of not "caring" is a form of accepting it. Just another stage in this whole process.

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  26. AD, you've nailed it on the head!!!!!! I totally get where you are coming from. If others are not thrilled then they don't need to read your blog. As for me, love your words, music to my ears!!!!

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  27. I really get the idea of feeling more positive when your expectations are low. For those of you that don't get it, imagine that you're taking an advanced mathematics class and you keep flunking out no matter how much time and energy you put into it. How do you feel? Like shit, right? Now imagine you're taking elementary mathematics. You know the material and you're acing the tests. You're not learning much, but it doesn't take much time or energy from you either. You just feel better. Of course, you'd like to be successful at a course where you are learning something, but for many of us, it seems like that balance isn't an option. It's better to achieve success and still have time an energy for other things. Thus, you may find you're more positive.

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  28. Good day! I simply wanted to highlight the fact that you really succeeded in creating a beautiful blog. And I have a question for you. Do you plan to write in a professional way or running a blog is basically just a?

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  29. I think there is a possibility that when moms ask you how you keep a positive outlook, they really want to ask how is it you find it in yourself to appreciate your wife and all she does! Even in the most typical households, stay at home moms are so misunderstood and UNAPPRECIATED! You actually recognize the amount of physical work, and mental planning that your wife puts into taking care of one child, with all his special needs, and you publicly praise her for her efforts. You are a rare commodity, and whatever it takes for you to get through the journey, it is a great blessing that you take the time to acknowledge your wife. If a woman feels appreciated, she wants enjoys DOING for her family. The rest of us are jealous:) God bless your family and thank you for sharing your journey:)

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  30. I appreciate your honesty and willingness to share your personal experiences with us. I have been in my own Autism bubble because no one in my life can even begin to comprehend what life is like for a single mother trying to raise 3 children with disabilities without help. Other blogs I have read tried to paint a fairytale image of what life is like raising an Autistic and mentally ill child, which I could not relate to. I love your blogs because they share the same truth I see in my situation. I have always had to guard myself and watch what I say to people because they'd take my frustration, venting, and tears out of context. I feel like you and your blog followers can complete empathize with the emitional rollercoaster me and my children are on so I finally feel comfortable expressing myself in a forum where I don't have to worry about being judged harshly for not seeing my daughter's disabilities as a blessing. You are providibg those of us who do not have a local support group the opportunity to find strength to battle thru another day.Thank you!

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  31. :You said exactly what I feel like! I am in the phase where I am sick of trying everything and am just not caring one way or the other. We still do speech and OT, but that's it. He has been pretty happy - a little aggressive sometimes but not enough to worry about yet. Will deal with it later.

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  32. As a mom of two autistic children, I thank you for your honesty. It's hard to find parents out there that share the rawness of their emotions when dealing with autism. I, myself, still cannot find the peaceful place where I'm so happy being an autism mom. In reality, I'm not just that. I'm many other things and that is just something else on my plate. As all of us, I try to take it day by day. But some days are harder than others.

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  33. I went to an ABA class once for therapists where a video was shown before the class. There was a phrase in there that hit me like a runaway bus with no brakes. I don't even remember the exact words but it said something about parents grieving the child they will never have. Naturally when people are expecting they being to have hopes and dreams for their children. How they will look, who will they be, etc....they never think that their child could be special needs. Well...they might worry...but they never day dream hoping for it. When the diagnosis comes, it's like a death of all the parents hopes and dreams for the child which they must grieve. Now the difference for me...with autism vs. other diagnoses is that autism has no caps. It has no cap on intellect, life span, potential...etc. I know other parents that have special needs children with caps have the opposite to deal with...I'm not minimizing their pain one bit...I'm just saying that the pain and hurt I feel is different. I've had people tell me "well at least his not physically handicapped". Yes, that is true. We are blessed he's physically healthy and able to run, jump, and play, can hear, can see but....don't over look that my pain and hurt for my child is still very real and very strong. I considered anti depressants before but have opted out of them for the time being. We'll see in the future if I ever pick them up. Thank you so much for you blog. It's very refreshing to me even though I'm sad that you deal with things similar to what I deal with.

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  34. I'm enjoy your FB page. Thank you for this post. I especially liked the part you said about may be having a harder time with the Dx, if he was not an open & shut case.

    It drives me insane, unintentionally, trying to compete with other parents for who has it worse. My 14 year old son is a handful. Then some!

    He's smart, too smart, for his own good.

    He's verbal and is able to pronounce words better than I can. Like any patriot, he can fool entertain the best of onlookers, with his odd word for word speeches and shady lawyer points of view.

    He towers over me and much stronger than I am. He walks around unaware of much and when he realizes he's being watched by strangers he becomes angry. People take him the wrong way. He appears to be a normal a-hole. They want to call him to the street. He'll accept! Like its to cross the street or he'll think they are making fun of him.

    I fear public with him at times. I'm afraid he will meet his match one day and someone will not understand when I say, I'm sorry, he's autistic, as I usher him away.

    For years I CRIED and SCREAMED for help, knowing something was not right. I was told he was a bad child. ADHD. ODD. Psychotic. A demon needing help, an angel and I'm telling stories, that my bad parenting was to blame.... I heard it all before I had him evaluated for sacrificially for PDD. I didn't get this until he was 12 though and we lost LOTS AND LOTS OF TIME!

    I lived life sheltered and dysfunctional as all hell behind my closed door. And still do, but know their are others too. I have the same problems with my HFA child as a severe child, at least in my option! Like you I dont want to switch and find out. I love my child just as well!! But I wish everyone could be more like you and realize autism parenting is HARD, no matter where you are on the spectrum. Neither of us have it easy or easier than the other. We have our own sets of problems that are similar in ways and completely different in others.

    I don't know how you do, as you don't know how I do it!

    Its frustrating when your otherwise normal looking, appears to the untrained eye to be a "functioning" child flips out over some trigger and turns into a circus in 1/2 a second, flat. He was 14 when we walked in Walmart, we leave in a rush with a 5 year old in a teenager body.

    He is still just as autistic but he's gotten good at manipulating his way through life. While its frustrating that someone cant get their kid to use a fork. I have a hard time with mine using forks for other things besides eating. Like playing darts with the wall. Or a stack knife as a cool a TMNT action figure accessory while at grandmas. Or not wearing diapers regardless of not getting up to pee at night.

    I've heard people say I should feel ashamed for saying he has autism since he talks and how wrong it is that I want and need him to shut up at times.... but they don't have to deal with what I do. Sometimes you have to shut up... for real! (I can't tell that walmart ***** what I thought of her, when she kept getting in my way and flashing dirty looks my way) and my kid don't get that. He'll walk up to a stranger and tell him whatever he thinks... or heard at any point in his life. EVER.

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  35. Thanks for being honest, it does hurt but that doesn't make me love him any less. I don't think I've accepted it wholly yet but your post helps me further down that path. Thanks !

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  36. Thank you so much!!! My son is high functioning with a ASD. I also screamed and cried for yrs and he is only 6 that something was seriously wrong with him. he started getting EI from the time he was 8 wks old due to being a premie and things just didnt seem to be wroking, doctors just weren't listening.We started meds at2.5 yrs old for serve aggression and it wasn't until the past few months that i found a new doctor that gave him his ASD, put him on new meds and the aggression at home has calmed down some but at school, well thats a different story. A part of me was relieve to finally a DX but a part of me is so angry and cries often. I get angry and upset when the meltdowns happen in public. At school he still gets suspended due to the aggression even though they are aware of the ASD. I could go on and on.... But I love your page.It makes me that I'm not alone. Again, Thank You!!!

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  37. Your cool! Your page was recommended on FB and I ended up reading this post. I have a 8 year old on the spectrum and can relate to most of your thoughts and between you and the other posts it felt like therapy. Hoping you and family keep the strength you need to carry on. The life of a child on spectrum can get really dark; sometimes you just would like to be regular. Life doesn't always have happy endings just trying to make the best of what I got. Thanks to you all....your all so totally inspiring.

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  38. My name is Amy and I've been a long-time reader. I'm a single mother with 2 daughters - the 12 (almost 13 year old) Gracie is profoundly autistic/MR. She was born at 24 weeks gestation and her severe autism is almost certainly related to this rough start.

    I had an "aha" moment with your above post - I had to share. The "lowered expectations" piece. (I hear tthe SNL sketch music when I typed that) I've done that - I've stopped pushing so hard with my girl. Over a variety of issues. Speaking (she's non verbal) is one of them. We're working on the augmentative communication device now - but I'm not pulling apart my life to make sure she says "op" or something - before I help her open a bag of popcorn. It made her crazy and never progressed. I've stopped making myself nuts to try and get her to stop drinking diet coke. I let her drink it and augment with other water when I can. It's a bit of letting go.

    My Mother doesn't get it. It usually comes up when she hears about some EVENT. An autism movie night. Or Autism night at the Please Touch Museum or an Autism Walk. She thinks we ought to GO GO GO. And yet, I know my girl. She wouldn't find it fun to be in those crowds. I'd be worried sick she'd dash off. She'd not really get why we're in a dark room watching a movie when she has her iPad right there.

    I don't want to do it those things, because it doesn't meet her needs. It might meet my Mom's, I guess. Marching gracie out to be part of a community or to keep trying to get her to join in. My mom has gone so far as to tell me I've given up on my daughter. That I think it's unlikely that she'll one day wake up and start typing her autobiography on a laptop like some kid on youtube my Mom saw. It makes me feel badly that my mom accuses me this way. And I do worry she's right.

    But I don't think she is, most of the time. My "acceptance" if there's such a thing to be had - is to switch gears from trying to get Gracie to fit into OUR expectations so much - and instead make her as functional and happy as possible.

    Anyway _ I have a busy day ahead - but couldn't resist sending a note.

    Thanks....Amy

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  39. Thank you for your honesty. I've fallen in love with a single mom who has an autistic son. I love him as well. This is a challenge for all three of us, but he has actually adjusted quite nicely and has had two positive weeks in school now. In a row! Thank you again

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  40. First time saying anything here. It is what it is. The little guys in family.. So you live with it. You help him and survive. That's how family is.

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  41. I have a child with severe autism too. I can relate about not being the "warrior" parent. If God wanted me to be a warrior, he would have made me one. I am much better at doing what I can do with the resources I have been given, and trying to find the goodness and love in the life of autism.

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  42. I just got asked over the weekend how I deal with the daily dose of Autism. My answer was just like yours. I take antidepressants. My son is high functioning which can be crazy because he can obsess over everything that bothers him and tell you about it. But he is who he is. My son.

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  43. Thank you for accepting "the nice women from Early Intervention that come into your home". I used to be one of those women, until my own child initially diagnosed PDD-NOS later Autism, was having so many problems in school that I had to stop working and be a full time mom. I was often amazed at the people who would option not to have our help. We are FREE people! Free services In your home!!! That is hard to get these days. Most mothers said they wanted the services but the fathers didn't want the stigma of having us helping them. Sometimes I just don't get people. I'm happy to not be working anymore, but I do miss the relationships I formed with many of the families I worked with and I miss helping the children achieve developmental milestones. Thank you for your blog. I enjoy reading it.

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  44. Hello! I am an adult with severe autism and I just wanted to thank you for this post. I know it's a bit old, but still.
    You see, since I am grown up, I was a child in the 90s when there was absolutely NO services for children with Autism. Most people had never even *heard* of autism. If they did, they thought of Rainman. So, my mother had to do what you did and adjust her expectations. She didn't have a choice.
    I honestly think that myself and my brother who is also autistic turned out a lot more emotionally healthy because of this. Of course she always has had moments where she wondered what being a parent of a typical child would be like, but she told me that she feels her being a parent to two disabled children was what God intended for her. She is also not an ~autism warrior~ parent. By the time therapies became available, we were both too old for them and she found ABA to be condescending for people our age. She is also firmly working class, had tattoos when it wasn't popular, and used to be a boxer, so she never really fit in with the wealthy suburban mums. She is also intensely Catholic and felt that the "regretting your child's birth and crying every year on their birthday" thing was melodramatic and sinful. Even with a different background, you remind me of her. This is good. We turned out okay as disabled adults, and I'm sure Kyle will too. The things you are doing right now are the right things, keep on doing them. Thank you for posting this, you're the first "autism parent blog" person I haven't wanted to strangle and can actually relate to. :)

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