Monday, February 20, 2012

The Hardest Thing To Write About -- my son's initial autism diagnosis &late regression







my son's regression makes me think of deniro's character in this movie...
i cant watch this movie anymore...


(originally written & published on February 20, 2012)



Ok, so this is probably going to be the hardest blog post for me to write so far.  And I have no idea where it's gonna lead so bear with me if I go off on tangents. I'm gonna be remembering things that I haven't thought about in awhile so it could get messy.

But here goes...

I've written in a few previous posts about Kyle's mysterious late regression.   If you haven't read about it before I STRONGLY RECOMMEND that you do before continuing this post.   You can read it HERE.

We will wait for you...

:-)

Ok, did you read it?  Great welcome back and away we go...

Even though I covered a lot in that post many people have asked more about it. They want more details. They want to know if we know what caused it. Was there any early warning signs?

People on this blog also always want to know the details of Kyle's diagnosis. It seems like you can't have an autism blog without at least one post (usually the first post) detailing the story of your kid's diagnosis and how you dealt with it, etc.

The story of Kyle's diagnosis isn't really
that interesting. And the story of his late regression is very painful.  And i never wanted my page or blog to dive into all that.  I've spent years learning to deal with it. So I don't want to relive it too often.
But for the good of all of you, I'll get into it a little bit more. But I'll say up front that I still have NO F$&KING IDEA what caused his late HUGE regression.

Ok, here goes...

We have a good friend who has 2 sons with autism and she was dropping subtle hints about Kyle maybe being on the spectrum as early as 12 months. Flapping, walking on his toes, etc.   We thought she was CRAZY.



I covered it in the other post but basically Kyle was diagnosed pretty early... at about 18 months with mild PDD-NOS.  We got into the Early Intervention program.  And we were able to get a plethora of services.

At least in NY when you are in EI and CPSE you can get alot of services. Then when you get to be 1st grade age you enter the CSE system and they start tightening their purse strings.

But anyway between the ages of 18 months and 36 months Kyle was getting a TON of services!  Our house was a revolving door of speech therapists, OT's, PT's and ABA therapists. We added it all up and on most weeks he worked more and worked harder than me!  35-40 hours per week.

And we had these AMAZING women in our lives. And Kyle was THRIVING!  Within weeks of showing up at our house his attention span had grown by leaps & bounds.
The first speech session she couldn't get him to sit still for more that 2 minutes. Within a few months he would sit for the ENTIRE 45 minute session. And he knew the routine of which games went with what book and what song she would sing when she brought out that toy. Thinking back it was AMAZING!

Some family members would say "he's working too hard.  you have to give him time to be a kid" and we would say "everyone says the more the better, the earlier the better"
As I said in the other post he was learning his numbers, letters, and had  an amazing memory. You would show him which states were which on a big US map like 5 times and he had it memorized.

His point was good. His receptive language was good. We would carry blocks and books with us everywhere and would sit on the floor anywhere we went and imitate one of his therapy sessions and he would LOVE it. He enjoyed learning and he liked to show off his knowledge.

That was key thinking back.  He enjoyed learning.  And as parents that is HUGE.  Because if your kid shows a glimmer of interest in learning it makes it SO much easier to "work" with him on your own.

When you get something back from your kid when you use a particular teaching method (ABA, Pecs, etc), even if it's just a glimmer of something, an iota of something it makes you want to work with him on your own outside of the "school day".

We haven't seen that from Kyle in a LONG time. He doesn't enjoy learning anymore. With mom & dad he gets stressed when you ask him the simplest question like "point to nose"

Anyway, back to how great he was doing...

He was doing so well and was so good and calm behaviorally that I remember thinking and maybe even saying to the wife that besides the fact that he can't talk and a few stims, he's pretty much got it going on. I had visions of grandeur of  him maybe going to an integrated kindergarten in a few years.

I just now remembered that even his stims were different and more high functioning(?)  One of his biggest stims when he was younger was spinning EVERYTHING.  You know the way you twirl a coin. Kyle could do that with anything....which means his fine motor was much better. I forgot about that.

And he was using a spoon and fork MUCH better back then. I forgot about that...
:-(
(see this is why I don't write about this)

Anyway he was thriving between 18 months and 36 months and thinking back me & the wife felt like we were doing everything right.  We were "hot shit". We advocated for our kid and got him what he needed and he was progressing nicely.  And maybe we were a wee but judgmental in our minds.

We would see other ASD kids out always with headphones on watching dvds or listening to music and zoning out and we would frown at each other and say "not our kid".

We would see other ASD kids who didn't sit at the table for meals at big house parties and were left on their own in the other room to watch tv. And we would say "we want Kyle to interact with everyone" and there Kyle would sit (strapped in most of the time) and he would eat with the adults and we would show off his skills. "point to 40". "point to Florida" and he was an angel.

This is why I'm so ok with people on my page & blog thinking their way is the best way. We were there too. Our way was the best way too...until it wasn't anymore...

Slowly between the ages of 3 & 5 it slowly all went away.

His age 3-4 school year (what would that be pre-pre school?) we fought to get him into this amazing ABA school. And it was a great school and the staff were amazing. And the parent training sessions were helpful but slowly our Kyle was slipping away.
We always say that he was getting burnt out on ABA.  But now thinking back i don't think at all that the ABA burn out caused his regression.  Maybe he regressed and was upset because he couldn't do it anymore?  Who knows?

All we know is he  was miserable there. He would cry a lot. By January of that school year he was so upset all the time and i guess upsetting the other children that they had taken him out of the classroom setting and he was getting his ABA trials one on one in one of the basement offices.

And that seemed ridiculous so we left that school with our tail between our legs and went to more of a TEACHH school for his age 4-5 year...

But it didn't matter. The HUGE SLOW regression was happening. And by the time he was 4 1/2-5 years old our good receptive language, pre-speaker, who knew all his numbers, shapes, colors, and states who could use a fork and sit for a meal or sit on the living room floor with me and play with puzzles for 15+ minutes straight was gone...

And in his place we had our severely classically autistic son that can barely sit still, climbs on everything, plays with his saliva, has a low attention span, and hasn't made any significant forward progress in years 

Basically the Kyle I write about and you all know and love today.  :-)

And that's it. We have no explanation. Nobody does.

In the past few years we've done all the autism rights of passage. For one reason or another we've had MRI/ Catscans done, we did a 24 hour EEG, etc and as sick as it sounds I have rooted for something to show up on these tests. Something to give us an explanation or a direction to go in. Maybe he's having silent seizures?  Maybe that caused part of the regression. And there's meds that help with that. But all tests turned up normal...

So I've given up looking for an explanation. What's the point?  How will that help me/him now?  And I've said in the other post that maybe he had CDD on top of his autism. Maybe he did but how will that knowledge help us now. There's not a different treatment method for CDD. It's the same deal with less retention and progress. Yep, that's what we got...

And as for blame ...I don't blame ABA. That wouldn't have caused his fine motor regression. I don't really in my heart blame the diet or any of the biomedical things we tried. I don't blame myself or my wife.

For the time being we just have to chalk it up to "SHIT HAPPENS" and stop thinking about all the things he used to do and stop thinking about the type of kid he was heading towards. And just love like crazy the crazy severely autistic kid we currently have.

It took me years to put away the things he used to do... But I have until this F*&KING blog post!

Ive put in far back in my mind.   Now i say it's nice to know what his brain is capable of and maybe it's still all in there.  And maybe some day Kyle will have a love for learning again and have his Carly Fleischmann moment but for now we're just living in the here and now and trying to make our kid as happy as possible.

That's all i got  The end. Whew. Thanks for drudging up all those good memories ...NOT!

:-(

I think I need to take an extra antidepressant tonight.


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If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above or by going to http://www.amazon.com/?tag=a050ef-20  This way I can make a little money to help pay for my son's after school & weekend therapies.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!





76 comments:

  1. Much love AD. I am right there w you dude. Bring on baseball. Single Autism Dad

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  2. I know it doesn't help the pain but one thing comes to my mind: We (as in society) spend so much time living in the future, looking forward to events, making plans that more often then not we forget about the RIGHT NOW moments. Its such a tough lesson for anyone to learn (and don't worry - I learnt it myself!) but in ways it is a blessing when it is learned..

    I spent times last year thinking what if? Like: What if I had been around in the beginning? Would he be any different? What if he hadnt spent so much time doing this or doing that? Would that have made a difference? But at the end of the day those things don't matter. I cant change it. But what I can dois notice when he makes small changes or does little things like bringing his chips to the dining room tableto eat while I eat my dinner. It was small,but it brought a smile to my face. And that? is living in the now..

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  3. I look forward to your blogs and posts to facebook. I must say that Kyle and my son are so close on the spectrum that when I read your posts I can totally envision my son while reading it. I feel your pain completely on the slow regression. This may sound silly but I find strength in reading your posts. It can be a very lonely feeling out there in the world of Autism. Thank you for sharing your feelings of weakness and also your feelings of strength. I am sure that I am not the only one that looks forward to learning from you and your family.

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  4. Regression is just so hard to talk about. I know. I've been there. We also had a regression around four years old. My son is 10, and I don't think I could write about it now. So I admire you for taking a shot at it. Thanks for posting.

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  5. Take a deep breath and carry on! Isn't that our "Motto". Lol.
    That was a very brave thing you did and for others too!! :)
    Poor Kyle, Poor Momo poor every kid that lives behind, along with or in two steps in front of there Autism.
    I actually read it and feel real angry that Autism robs us of so blinking much! We love our kids dearly but for them we just wish for more.
    Hugs AD. Replace the Antidepressant with a stiff drink and have one for me ;)

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  6. I think it takes a lot of courage to write about the regression and what we all live with- The " what if's " of Autism...what if everything kept going well..and then it doesn't. We just have to keep moving on certain days and sometimes it just sucks. It is refreshing to read your blog and have it be so genuine.
    As someone new to your blog it is comforting to know that I am not the only one who on certain days has just had to deal with too much..Tomorrow is another day..just keep swimming (Dory from Finding Nemo's famous quote).

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  7. Thanks AD, my son is 5 and Kyle sounds very much like him. He was diagnosed relatively late (3yr3mth) mainly because in my country, there is a big waiting list for diagnosis. I painfully recall that he knew 33 words at 2.5yrs, over the next year he would lose them all one by one. I describe it like trying to hold a handful of sand and no matter what you do the sand(words) fall through your fingers. I feel your pain :-( Love your blog by the way :-)

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  8. ((hugs))

    I know the pain of a bad, uncontrollable, "late" regression too. My oldest and I have been through more than one... My youngest has now started regressing too and is now being put through evaluations and tests to see if he has Autism too because of them...

    Thank-you for sharing this. I can feel the pain in your writing here because I know it in my own life all too well... It helps though to not feel so alone. Even though we wish the similarities weren't such sad situations.

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  9. It takes a lot of courage to write about something that brings back such raw feelings. Everything you post helps me know that I'm not alone in how I feel about Autism. You help me know that it's ok to be mad, sad, pissed, overwhelmed, happy, overjoyed and every other emotion that I feel. Thank you for writing things that are so dear to your heart and sharing your family with us.~Angela

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  10. Just wondering if Kyle has ever been tested for Mitochondrial Disease which is fairly common with children on the autism spectrum. I have 3 yr old twin boys with mito and an autism spectrum diagnosis. A lot of the mito stuff happens with regression. It's an energy production issue with cells in your body. There are different types of mito disease -- usually people are put on a vitamin cocktail and carnitine which helps with muscles. GFCF diet helps too because it creates less free radicals (undigested particles) in your body which take away energy your body has created and when your body is not creating enough as it is, it is worse. check with your neurologist...we also see a geneticist in Cleveland (Cleveland Clinic) for this. Just a thought... maybe you have already looked down this road.... I just started reading your blog so I am not sure.

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  11. All of our regression stories are painful, but I have to admit yours "freaked" me out a bit. To think he was pretty much a "star" of progression and to move towards severely autistic is frightening. You say you don't blame vaccines? Does that mean he didn't have any more? Because I have a friend whose son I watched go from PDD-NOS to full blown autism after his five year vaccines given at age four. Did he have any surgeries during that period, or antibiotics? All these can serve to make our children sicker. Could he have had any exposures to lead? Did you do a heavy metal testing on him? I feel your pain. My child was lower functioning until I got him well. He no longer has chronic diarrhea and under eye circles and only occasionally gets sick now. He still has mito issues and gets fatigued, but he's mainstreamed in a typical K class with an aide and doing well. Hang in there!

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    Replies
    1. What did you do to get him well?

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    2. I agree with you whole heartedly, children with "mild" issues can be sent spiraling back after vaccinations between 4 and 5. I have no idea how I will avoid this issue but plan on doing anything necessary. My son is currently almost 3 1/2 and the day is slowly approaching for his 5 year old shots. It keeps me up at night agonizing about it. And in response to Anonymous's question on 1/7/13 in regards to how I got my son healthy. I did it through Biomedical treatments, GFDFSF diet with GMO food avoidance. It is possible through biomed. Avoiding antibiotics is def crucial as well. Probiotics must be given if they are a necessity. I keep telling myself, all I have to do is get him to 6. Then I think we will be out of the woods.

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  12. Thanks so much for sharing, AD... Clearly it was painful for you to do...so thanks again. Absolutely love your blog! Sending prayers and positive energy to you, your wife, and son <3

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  13. Don't be discouraged. Maybe he is bored and wants to be challenged. If he has all his needs met daily he may feel completely satisfied how he is. My son is 13 now, but I remember when he was 5 and 6 and the regression. 1 foot forward 2 steps back. I remember that overwhelming depression. It will click in someday and you'll see the growth. He is soaking everything he hears and sees, even though it seems like he's not paying attention, he is. One day BOOM!! there it is. My son did not talk until he was about 10 years old. now he surprises me everyday words phrases that he blurts out. sometime issues come back that are years old, they hang out for a while, then go away again. kinda like a circle. keep on keeping on. It gets better I promise!

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  14. It's true what unknown is saying, I'm not sure that he's bored but i know from my son (10) that it's going to be allright. Try PRT for a therapy, soooo much better then ABA. The only thing ABA training did for Bear was keeping him sit at the table and trained him like you train the dog. Great but not in real life. I know for sure Kyle is going to progress soon if you go in his motivation and copy him to get that contact with him again. Go back to the basic and forget about the ABA kid he was for a while. And thank's for the honesty :)

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  15. As painful as this was to write, I think it's helpful to your readers. I think we had a similar regression after diagnosis situation, only a milder case. Of course, therapists and doctors don't want to admit that their treatments aren't working or are actually causing regression, so they hit back with the fact that the parent is doing something wrong. Even other autism parents were telling me that the problem was with me (the parent). I just 'thought' it was regression. I wonder if this 'regression after diagnosis' is more common than is openly recognized. Thank you for your post.

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  16. hi I'm unknown, My name is Mikki. I typed it in but for some reason it keeps saying unknown.

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  17. I think you are so brave for telling your story and for taking it day by day and living through it. I also have a severely autistic son, 13 yrs old. My son was showing developmental delays right from birth ie rolling over, holding head up ect. But his regression was so slow I didn't notice it until we looked at old home movies and saw that he had lost some skills, he was always pretty low functioning but the regression was so slow I didn't even notice. Talk about guilt.....
    Anyway, thanks for sharing your story, I know your struggle between grieving and trying to live and be thankful for the present......after 13 years, I'm still surprised at my grief.
    I think you are courageous and brave....

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  18. I can totally relate and my heart goes out to your family-we had this one teacher-she worked with him afterschool-this girl simply had IT-and my son loved her and she was able to teach him math and reading and good potty habits - and I thought the same way you did- wow- this kid is going to be ok!! And one day she announced she was moving to California-- after she left- he regressed because nobody could ever fill her shoes.She comes to visit whenever she is in town and our whole house just seems to light up- she was sort of like an angel. We have yet to find someone like her since

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  19. You are awesome for sharing your story. Hard to figure out why "Shit Happens" sometimes.

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  20. Dear Autism Daddy, thank you for sharing your story. It helps us face our own "shit happens" moment/s too. Your story is powerful and much appreciated. In your honesty you help our family too. I just hinted at our regression story the other day on our own blog. Though a completely different story, as all our kiddos are different on this "shi&&y" spectrum, it took so much out of me to even address that I've gone into hiatus. Thank you for your courage and for what you do for us with your posts. Keep loving that amazing son of yours! Rebecca Rae Burroughs, Ithaca, New York

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  21. mom of 2 on the spectrumFebruary 21, 2012 at 10:17 AM

    thank you for sharing....my heart aches for you....

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  22. Thank you for your honesty and courage in sharing. My son's difficulties are so mild compared with so many, but he has had regressions, too. They are more difficult to accept than the things he just has delays with. I pray you find the "key", whether in looking back for a trigger, or in looking forward for an intervention, that will help Kyle connect again.
    I don't know whether to blame vaccines for my son's difficulties. He only had about 6 words before his language disappeared. We thought maybe he was just more interested in working on his motor SKILLZ. (Cuz he has skillz! LOL) And, I had a pregnancy complicated by Rh factor incompatibility. Was it the pregnancy? The vaccines? Both? Neither? I will likely never know, either, exactly what caused my son's issues. I do believe there is value in trying to find out, because that would suggest additional avenues of intervention (or rule out ones that might be unproductive.) You are the one who has to decide what is right for your family. That may not be what is right for my family. After much research, we have decided to forego further vaccines for any of our kids. I have friends who only get single vaccines spread out, instead of multiples according to the "schedule". I have other friends (with documented vaccine-damaged children)who are activists against vaccines and their makers. I also have friends (that I pray for!!!) who follow the "schedule" as close as possible.
    Keep following your heart. You are the only one who can make those decisions. Thank you for your blog. You are a great encouragement to me!

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  23. Thank you for sharing! I know it was hard but we share in your pain. Many blessings!

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  24. Thanks Autism Daddy for sharing. I've been very lucky that none of my children have regressed but it is always in the back of my mind especially as we have a 20 month old who is in the early stages of getting a diagnosis and sometime worry that this maybe the best it will get.

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  25. This is something I worry about every day, a second regression... Something that will take away all of my son's progress. You experienced my deepest fear, and I can't imagine what it was like. I can't blame you for not wanting to relive the memories. The first regression was hard enough, but I wouldn't want to see it all over again. You have my deepest sympathy for a second loss. On a more positive note, there is only one way to go now, and that's back up...

    On a side not, I found this article rather interesting and wanted to share.

    http://latedx.wordpress.com/2012/01/04/the-second-regression/

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  26. http://www.autismhwy.com/articledetails.php?id=77

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  27. Thank you for sharing. I really appreciate all of your post. I'm hoping and praying that all of our kids have that Carly moment one day.

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  28. Hey AD, so glad you posted, I am currently experiencing the same regression with my 10 year old son. As well as severely autistic, my son was diagnosed with bi-polar disorder at 6 years old. Since then it has been a struggle to fight with finding the best cocktail to keep him on a even keel.Last summer he starting hitting his head with a closed fist, so on went the helmet.He was hospitalized for the 8days they needed to change him over to new meds but hasn't really been helped by the meds he's been on and the head hitting has still been going on.Since September he has regresses in his functional routines and wants nothing to do with school.He either tantrums or cries most of the time and I feel like e worstarent ever when I put him on the bus in the morning.

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  29. I really appreciate your writing. It's people like you that gave me the courage to open up and write about my son. He too was a regression child. You can read about it here:

    http://mowgliinutica.blogspot.com/2011/07/child-that-autism-forgot.html

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  30. My daughter has been babysitting a boy with autism who is about 9 years old. She has started bring him home to our house recently, and when she does, he spits and pees all over. It's been hard for me to deal with this, because I'm already overwhelmed with laundry and dishes and "important work" that I'm behind on. Although I know it seems unkind, I'm afraid I resent this disruption of my life.

    I found your blog today and read a lot of it, because I've trying to figure out how to handle this situation better: what to feed the boy differently or how to train him differently or occupy him differently. I have to say, of all your posts, helpful as they were to increasing my understanding, this one is the one that cut straight through to my soul and made me cry and "get it."

    I just want you to know that you helped one outsider (me) appreciate a little more that working with an autistic child IS important work, regardless of the degree to which the child is currently progressing. Your honesty in sharing the reality of the situation is a significant contribution. Thank you for helping to educate me.

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  31. Thanks for sharing your story. I am an occupational therapist with more than 30 years experience. The child that still haunts me was a five year old with mild autism, verbal, expected to be mainstreamed for kindergarten who regressed to a severe autistic state over the course of a single month. Lost all of his language. Regressed in motor skills and social interactions. While this was happening (and I was freaking out), his TEACCH classroom teacher did not even notice. Apparently there was no expectation for communication or social engagement. The family had him tested, scanned, poked and prodded, but no answer. Now 11 years later he remains severely autistic. He has acquired a little speech, is generally happy, follows routines better. I have not worked with him in years but am fortunate to see his family from time to time.

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  32. Wow. Thanks so much for sharing and your honesty, sorry you guys had to experience this, no words except hang in there and take the moments you can enjoy. I fucking hate autism.

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  33. My son regressed from 18 months until maybe 3 or later and that time of our life was the most painful. We have very slowly been getting him back .....very slowly. At the age of 6, he still doesn't speak much but imitates words now. Your son is in there....he is! I don't believe in windows of opportunity because my son's window is closing but now we are seeing some of the greatest growth. The brain is mysterious and I truly understand that now. You inspire me with your posts which are honest and candid. Don't ever, ever give up! I know you won't.

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  34. We had a late stage seccond regression too. J was 6 and that was 7 years ago. Lie has been very different, very difficult. Maybe I'm ready to think/write about it as part of my process... Thank you.

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  35. My son -- say around 12-18 months, maybe even older, had GREAT eye contact. We would go to a restaurant to eat and he would pick out the prettiest girl there and flirt with her the whole meal. He was diagnosed at 3 1/2. He didn't have that quality of eye contact then, and still has not regained it. I think there are neurological processes we still do not understand, and they "kick in" (for lack of a better descriptor) at different ages/phases. My heart goes out to all of you . . .

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  36. It's so hard to face the fact of regression,it's just prove even more that my child will never be excepted for who he is,that no 1 want to be bother with him except those who get pay to or that my golden yrs are tarnish the fact is no matter how I fight for him ppl still say your child,your problem deal with it.

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  37. Wow, just found this post.....I literally felt my heart slip into my throat. I really feel for you, it was bad enough when my son regressed at 18 mos, but yours was even further along in learning....I just can't imagine.

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  38. I think late regression is more common then generally acknowledged. Since doctors therapists and educators never want to say that what they are doing isn't working they simply deny it. If the regression isn't too drastic the parents are put through the whole game of "I'm sure you're just exaggerating," The same way many of us were told when we first noticed something was wrong. I told my daughter's OT the other day. "Her responsiveness and her eye contact have significantly diminished in the past couple of years."
    Her response "That's probably because she's losing interest."
    I wanted to scream "YES AND THAT'S THE WHOLE F**KING PROBLEM!"

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  39. Hang in there. I think I'm going to start a blog about my thoughts and feelings with regards to my son's autism. Seems like very good therapy.

    Thanks for being real.

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  40. I know it doesn't help the heart, but late regression is not uncommon. Our son's happened in the space of lunch period at school. It's been a slow climb out chased by brief periods of his old spark punctuated by new backslides. I do know of other kids it's happened to, all them condidered severe. My other son, higher functioning, so far has had great progress, no backslides. Hang in there....if this community needs anything, it's unity. To compare on of my boys to the other...well, their journeys couldn't have been more different. One will go to college, one is currently hospitalized due to rage/self abuse. Yet we keep on searching...it's what we do.

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  42. Thank you so much for sharing this and your son with the world. I cannot believe you actually had me almost glad that my son has always been as severe as he is now! Ha- imagine that?! Im new to your blog but the thing that I really find so incredibly helpful is knowing there are others out there that are also annoyed about all of the feel good stories and links people send to us about HFA kids, and anytime we meet someone new they always have an autism story about a kid who is now doing great in college.

    Your story and struggle are inspiring so many and I thank you and your wife for opening your world to us.

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  43. You could be writing our story!! My son is 7, severely autistic, ADHD, OCD, non-verbal, not potty trained and lately self injurious. He developed right on target up to 17 months, he crawled, walked, he pointed and he talked, I even have videos of him playing "ring around the rosie" with his sister, waving and blowing kisses saying "bye, bye mommy, I love you" and one day he simply checked out. He was diagnosed, early intervention came, 40+ hours a week, not only he did great, he loved it, the more he worked the more he liked it, he couldnt get enough of it, he progressed every day, his eye contact was wonderful,he potty trained , he even talked again! and then it was all gone, even his motor skills are impaired now, regression on top of a regression! We've seen every kind of doctor, chiropractor, naturopath, nutritionist, therapist, we have tryed every treatment (conventional and non) Countless tests have been done and nothing. If only we could find something wrong! I have found myself secretely hoping for a tumor!
    So as hard as it was 5 years ago when we got a diagnosis, I would love just to go back, back to the comfort of simple, plain autism.

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  44. Our autistic son is 7 and is experiencing a major regression. We just got an EEG done and it came back normal. I ran across this other mom's website and saw that an EEG will not detect seizures that are happening deep in the brain. Some focal seizures happen deep within the brain and can be detected by the brain SPECT test.
    Her story is here:
    http://www.rdiconnect.com/blogs/rdi-culture/archive/2010/04/05/autism-and-seizures-part-2-and-3.aspx

    We were thinking about trying the brain SPECT. Thanks for your posts. It's nice to know we're not alone!

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  45. Can I just say FUCK AUTISM!!! Thanks! =(

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  46. AD, I really enjoy your posts. My son has Autism. He wasn't always this way. He was a regular kid until right before his 7th birthday. A strep infection triggered a faulty immune response...PANDAS. Not only has he lost some skills/abilities, but he has also failed to progress at a typical rate. Watching old home movies and looking at pictures of him as a young child kills me. I'll never stop trying to figure out the why. I do understand that, at times, you really do have to just embrace the moment and/or get through a single day. This is a long, hard road.

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  47. Hang in there. It was most likely seizures that caused the regression. I've seen it happen to other kids. Kyle is fortunate to have you guys for his folks.

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  48. Hi, I wrote to you before. I am in EXACTLY the same boat. Knew his numbers, could count...ETC. Dec 2011 51/2 yr old notice some regression. 6 yr old aug 2012....by Dec 2012 lost it all. School aba/vb class said this is not common. Went to CHOP (Childrens Hospital of Phila) JAN 2013...No silent seizures.....but did do a full blood workup in an area called METABOLIC GENETICS.....results come in this April thats right 12 weeks for this blood work. They told me that they most likely will be able to tell me "whats up" but a 30 percent chance to fix it. Sooo I find out in a month "what Happened" or what else is there. So, I wanted to mention METABOLIC GENETICS to you in case you never heard, cuz I am EXACTLY like you....but every now and again there is something i havent heard about, MAYBE this blood work will ACTUALLY tell something. CHOP seems to think so

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  49. Autism Daddy - you are my hero!!

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  50. One of my twin 3.5 year old daughters with asd was always extremely athletic jumping like a gymnast all over the place within the last five months she is tripping over crashing into walls falls down stairs easily and it seems she is regressing physically....so depressing..she also spins any object she can get her hands on...herself included when she stims...

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  51. thank you so much for your enduring honest and heart drenching story. I too share a similar story, my son who is now 8yrs turning 9yrs was diagnosised at 3yrs.

    So we started the journey of intense early intervention, and he made great progress. from non-verbal to verbal, reads pretty much any word, great skills! started showing great interaction, playful interactions, could relate through use of his interests, developed flexible coping mechanisms, showed great interests in people, was easier to tap into if that makes sense.

    THEN BAM!! the rains were pulled on this stallion!he no longer enjoys the things he once enjoyed, his interests are becoming very rigid and self stimulatory, he engages in repetative self talk, his attention span is lost, his engagement is lost, his skunken deeper into a very closed off autistic world. whether this has something to do with a growth spurt, chemical imbalance, stress related, other un-diagnosis disorders i dont know?

    I feel like im losing my son to a deeper autism, the early days were hard they were tough, but i think back to that HOPE that drove me everyday, hoping that one day he will grow and reach those developmental milestones and come out of his locked world, and he did, slowly and in small pockets he gave us his sunlight.

    We are working from square 1 again, with the heart drenching memories of the potential that got lost somehow somewhere. But i've had to mourn that loss, I've accepted that this has happened, that Autism is an unpredicated tornado! and you just gotta keep building on what ever is there for you to work at!

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  52. Autism Daddy, you are my freakin' hero. It's reading your blogs and others comments/posts that get me through the day. :) Thanks from the bottom of my heart.

    This has truly become a support system for me.

    - mom to 7 year old son with Autism.
    Lisa Schaefer

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  53. You know DeNiro has an autistic child?

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  54. Hi. I just found your site, looking for info about regression in autism, and your story got my attention. I do not know what you went through, having never met an autistic person who regressed, but I think you did well to share it.

    If I am getting the facts correctly, you mention that your son's regression started at around the same time he started ABA school, but you don't think ABA is to blame. You may be right, but other factors from school may have played a role (such as a sudden change in routine). Of course, that would not explain why your son's skills continued to drop after he left school... I'm probably on a dead-end there.

    If it may reassure you, I don't think Kyle has CDD. From what I could read online, people with CDD experience constant emotional distress, and from what I read on your blog, Kyle seems to live a happy life. Also note that CDD is a very rare occurence; having it double with traditional autism would be doubly so.

    All in all, I think your son will get better - eventually. If it is of any help, studies showed that autistic people become better with time at simulating neurotypical functioning. In other words, they eventually gain the skills that they lacked. Don't lose hope that your child may do great things!

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  55. My wife and I went through much of the similar experiences that you have including the early miraculous development with ABA, diet and theripasts35-40 hours per/wk, only to watch her stop and some of it slip away slowly over time by school age. Now 11 she's gained much of her progress back over time long after we ended those intense interventions and focus only on her enrichment and reasonable inclusion with supports. Although our daughter's regression hasn't been as severe as Kyle's, I have gone through that parent grieving process twice, and understand what you have gone through, and arrive at the place your in now in wanting your son to -above all, just be happy. God bless you brother-Autism Dad, your wife and your son Kyle.

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  56. Yes...same...Dane had some language, points to nose eyes, etc...then SLOWLY went away between 5 and 6... Dec. 2011 to Dec 2012. Went to CHOP (childrens hospital of Phila) BATTERY of tests...nothing. Nothing at all to say why this happened. TOTALLY WITH YA AD. I can relate to LOTS of things you write.....SAME over here in the Philly burbs

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  57. My Jason is 4 1/2 and if I can videotape him for the past 6 months it sounds like alot of what your Kyle experienced..I found videos of my son right before his diagnosis (2 years old) singing Bruno Mars songs now I can barely get his attention. Be prefers to spin, script and bounce a ball all day...Im glad one of my autism mom friends pointed you out at an event some time ago and told me about your blog. I really like how you keep it real...I love my son to pieces but I'm hating that he has to work 100 times more to accomplish something so simple that other parents take for granted because of f***king AUTISM... Thanks for this post and giving me a safe place to really vent my feelings about my son's diagnosis..Happy New Year to you your wife and Kyle

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  58. Thank you for sharing. I was just wondering if you had his urine/stool checked? You said you tried biomed, but didn't elaborate. With my son's tests, it showed markers for so many things that he is deficient in. It showed that he has Inflammatory Bowel Disease, has problems absorbing nutrients from food, and many things he was outside the normal range for. Looking back on my son's tests (when he was 2) one of the things that came back outside of the range was High Quinolinic Acid/5-HIAP Ratio. It says that it indicates an imbalance of these organic acids and an imbalance of these organic acides may be a sign of neurotoxicity. It goes on to say that it can cause nerve cells to die. That is terrifying. The summary of the test results do show ways to supplement for deficiencies specific to my son's test results/issues. Every child on the spectrum is different and although similar (like the autism leaky gut syndrome) the test results will most likely be different too for your child. The tests aren't cheap, but can be covered by insurance. They can show you so many things that are going on inside your child's body, from bacterial overgrowth to yeast, etc. Before deciding to not look further into the cause, the cause might actually come with ways to treat. Unrelated, sensory-enrichment therapy works to improve right and left brain connections too. Just a though. Feel free to message me at carolwaters822@yahoo.com if interested. If not, I'll keep you and your family in my prayers.

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  59. Thank you for sharing your grief. It made me feel less alone in mine. I am very grateful to you for that gift and I am sorry that it had to come from your pain.

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  60. P.S. I think of Awakenings a lot when working with my son. It is apt that you included it here.

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  61. It's hard when there is any kind of regression, my boy Peter has regressed a little since the school summer holidays reverting back to more repetitive language and watching pre school children's programmes(probably his way of dealing with being off school for 8 weeks) instead of watching and listening to his many music channels, have a beer and put those sad thoughts back in the corner of your mind and lock them away, then have another beer��

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  62. Thank you for the courage to talk about that all over again.

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  63. I feel you, antidepressants yes, double rum n coke (or whatever ur preference) YES!!! Much love n support, fellow severely autistic mum n dad x

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  64. Oy, now I'm freaking out about my son regressing. He's turning 5 next month and I hate to celebrate his achievements because I worry so much that he'll lose them all. This fucking disease...I hate it so much.

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  65. Thanks for sharing AD. My girl has a chromosomal deletion (PMS-I know funny hah?-Phelan McDermid syndrome). Regression is this syndromes middle name. We keep going back and forth all the time. Autism is part of this syndrome too, along with numerous health problems. All I can deal with at the moment, but regression is the worse… She was doing pretty well until she was about 2. Words are spurt out of nowhere too. Out of the blue she will just go "bath" or "goal" and then never again. Brain is the instrument in the human body that is controlling everything, yet it is a mystery to science...

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  66. Thank you for sharing your journey, AD. As an SLP of young children my heart breaks for you, but I see the strength and love in your words. I thank the Lord that Kyle is blessed with you, and we are all blessed to share your family's journey.

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  67. I am a mom of three and an SLP who works with children on the autism spectrum. I appreciate your honesty and bravery. Thank you for sharing- this is helpful to myself and others trying to help families in your situation :)

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  68. Autism Daddy, I have a son who is quite profoundly affected by his autism. But he is happy and easy as Kyle seems in being in many situations both with family and out and about ( swim lessons).My son does have some expressive language, though not sure if enough to tell me if he was being mistreated.( You know that other fear that grips all our hearts?) Any how recently he has appeared to anecdotally be producing more legible language. We have always known he was understanding 99% of what we conversed about, you know the discussions of where we are going, who we will see and what we will do not pre-calculus understanding.
    The new out put of language I think is due to the seizure medication. I think he was having so many absence seizures which eventually led to full on Grand Mal ( tonic/clonic). Since he has been on his seizure meds ( and we have had to increase them) he "seems" to have more ability to string words together and comment on things. I wonder if all the unseen seizures since he was little just stopped him and his brain from processing learning in an expedient manner. Do you think the regression was possibly seizure activity but undetected. I know Kyle still has so much seizure activity but do you Think the meds may be keeping the damage at bay so some learning with in all the activities and schooling your wife and you provide for him. Just a thought from another autism parent.

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  69. I'm glad and regretful at the same time about reading this. It scares the crap out of me yet it offers insight into something my husband and I have been dealing with. Our grandson (we are his guardians currently, until we can afford to adopt him) was diagnosed at 2 - just after his birthday. He's non verbal (used to say typical baby words like mama, dada, baba for bottle, etc) since 15 months. Loves to watch things roll - cars are his favorite. If we go to the store, he'll lay on the ground and watch the wheel on the cart go back and forth. Anyway, same story you read everyday here. But your story above intrigued me. You mention your ABA machine and that is our little guy - though still noon verbal. Smart as can be!! Retains everything and is an information sponge. BUT, we noticed lately (within past month) he is losing interest. We have talked to his teacher about his drop in "love in learning" but she assured us it's typical and he'll be fine. Now I'm not so sure. I've even created a new binder with more more challenging and new activities and insisted she incorporate that one into her session since he's been pushing her binder away lately. Another thing is she times him on everything. It's 2 minutes per activity regardless if he is enjoying it and focused or not. I've talked to her about this also and she insisted it is necessary for preparing for school. My gut is saying something is wrong and I'm afraid of losing him again. I certainly don't want "getting prepared for school" to be tthe cause of losing him. No offense to anybody but "f&#@" school - I want my grandson! Now I don't know that this might cause it. We aren't doing all the biomedical stuff other than limiting gluten (not completely), adding a good "Mightamin" and adding DHA to his milk. He's an extremely picky eater and I emphasize "extremely". I don't know. Your post makes me want to try anything before it's too late. I see signs and just feel like something is wrong. I also noticed that when he has been indoors a lot due to weather, he starts to get worse (we say "he's acting more autistic today"). OK well I just wrote a blog on your blog. Sorry. Thank you for your detailed blog and insights.

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