The Story of Newt

– Posted in: Autism Recovery, Newt, Newt's Story, Parenting, Personal Insanity, Tenzin

Another “outing” (I never realized how many things I didn’t talk about until I started this blog). Some of you know that Newt was diagnosed as having high-functioning autism/Aspergers Syndrome at age 3. Most of you who’ve met him within the last two years would, I’m guessing, be shocked to hear that information. Whether you spend 5 minutes or 5 days with Newt, it becomes clear that not only is he a “typical” 6-year-old (I love that word, typical — it’s a favorite among psychologists and educators) but a rather outgoing, creative, crazy little goofball at that.

Newt had a speech delay around age 2 that made me think something wasn’t exactly right. That, coupled with a gut feeling that some of his behaviors were a little weird, led me to have him tested at an early intervention program, and he ended up in speech therapy at our public elementary school. So began the saga — expensive psychology consults, crazy therapeutic recommendations, endless school searches, kooky diet plans, and unending internet research that felt comparable to working on a master’s degree.

So why am I writing about this now? I suppose because I finally can. When we were in the thick of it, I couldn’t share all of what was going on with even some of my closest friends and family because whenever we told people about “the diagnosis,” they inevitably started treating him just a little bit differently (can’t be helped — it’s human nature). And being treated differently from other kids was the last thing we wanted for Newt.

After hearing the diagnosis, we freaked out for a period of time, grasping at just about everything we could get our hands on. Finally, one of us (probably Tenzin) grabbed the other by the shoulders and yelled, “Pull yourself together, man!” And then we actually got to work. What followed was the last 3 and 1/2 years of our own “therapy” for Newt. Stuff that seemed really obvious to us but apparently not to many of the people who work with autistic kids. So are we special? Possibly. Lucky? Probably. All I do know is that if Newt really had autism — and here’s where I open up the Pandora’s Box — we’ve cured him.

I can’t count how many times I’ve heard about a kid like Newt. The most recent one was in the New York Times. A woman wrote in about life with her 5-year-old son with Aspergers. It was, well, sadly familiar. Minus the glass throwing (because there was no way in hell we ever had any free glass around Newt) and swearing (we really tried to watch it around him, due to his excellent mimicking abilities). Add in “not potty trained until age 5,” and you’ve got yourself a match. Anyway, whenever I read or hear someone describe their kid like this, I can’t help but think two things: 1) that sounds so much like my son — I know just how you feel, and 2) there’s hope — I wish I could come over to your house, meet your family, and help walk you out of this.

Big asterisk here: obviously the autism spectrum is huge and complex. I knew a woman whose son used to smear his feces on the walls. And I cannot imagine the pain associated with the father I once heard wishing his son would just say “Dad” someday. That has, thankfully, never been my world. To me, that is true blue autism. Not the diagnosis du jour that’s been tossed at my son and kids all over the country during the past few years. And here’s where I get into trouble again. . .

From my vantage point, Newt’s story has at least three possible explanations. One, he was autistic and we “cured” him. Two, he was misdiagnosed, along with lord knows how many other children, and has developed along his own individual path into a “typical” kid. Or three, he was misdiagnosed but indeed had multiple problems which we helped alleviate through our unconventionally conventional therapy. I’m sure any and all of those theories will piss off multiple people.

Ultimately it comes down to this. When Newt was 3, I took him to a gymnastics class where he proceeded to scream for an entire hour. New situations stressed him out. Loud noises bothered him. Today, he cruised right into a swimming lesson with a teacher he didn’t know while loud music played on the overhead speakers. So now I suppose I feel an obligation to explain how we got here. Because every time I read a story like the one in the Times, I feel a little sick to my stomach.

Tenzin and I definitely don’t have all the answers to help every child like Newt. But I think we may have some. So this is where I begin the Story of Newt (along with my other random life ramblings). If it helps even one heartsick parent who’s googling “autism” in the middle of the night, it’ll be worth it.

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16 Comments… add one

briosogirl August 6, 2009, 5:21 pm

I think it's great that you're writing about this. A friend of mine has a daughter that was misdiagnoised with Asperger's. It was a hellish lonely quest. This will help someone.

Anonymous August 12, 2009, 9:42 am

Funny that you came up with 35…because without the math and the analysis, that was my “off the top of my head” answer to the question.

-Julie

Raskbulls August 17, 2009, 8:28 am

It takes a lot of courage to go against the doctor's orders. I think people have lost track of their own confidence in their abilities as parents. Those of us with the actual child all day often have some actual insight into what's wrong or how it goes better. Our biggest hurdles have been overcome with our guy by going against professional recommendation. And when I told our pediatrician afterwards, she said she would have done the same. Stupid liability.

Organic Motherhood with Cool Whip May 19, 2010, 6:21 pm

Okay. I am totally hooked. I want to hear what you all did. Cuz I have several friends with kids who have aspergers/autism diagnoses and I want to know how you got through it to where you are now!! Hope there is more info in your other posts. I'm going to search now.

Kat July 15, 2010, 12:16 am

You probably are ticking some people off, but I am totally intrigued! Had I taken my girl in about six months ago I am sure she would have been on placed on that same trail. Personally I think autism is tossed around too much. Maybe as an excuse for parents, maybe for the medical community….I have my opinions, but this isn't the place, I guess. I can't wait to read more about your story!

PartlySunny July 16, 2010, 2:35 pm

@Kat: I'm glad you and your daughter didn't get sucked in. Thanks for reading. I'm guessing you saw the post on Newt's possible auditory processing disorder (Hear We Go Again). Don't know if she's experiencing any of that.

trydefyinggravity August 1, 2010, 4:09 am

Thanks for posting on my site – I too am intrigued…can you point me to some of your posts that talk about what you did? Always looking for any and all information…Thanks!
Alysia
http://trydefyinggravity.wordpress.com

Carol August 15, 2010, 11:38 am

We had some similar issues with my eldest (too long to go into now) but people do not believe me when I tell them how he was as a baby, toddler and young boy. Thankfully we didn't get a diagnosis because I probably would have bought into it. But I'm grateful we know people who remember how he was (including his md)

Kristi November 17, 2012, 2:23 pm

Hi,
I’m dying to know what you did. My son is three and has a severe speech and language delay. The spectrum is all around us but we don’t have an official autism diagnosis. I looked on your site to the next part of this story and couldn’t find it. Would love to know!
Thanks!
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Kristi November 17, 2012, 2:23 pm

Wow, that recently posted thing is cool! :)
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Tammy November 17, 2012, 3:26 pm

Hi Kristi! I’d love to talk to you about your son. I don’t know what your situation is — just remember that you know your child better than anyone else. So whenever someone tells you something that doesn’t seem to sit right, there may be a good reason.

You can read everything I’ve written about Newt’s autism story if you go to the bottom of the blog and search under “Newt’s story” in categories (I know — I should make this easier, right?). The specific stuff about what we did is in a series called “Peeling the Onion.” I really need to write more. Anyway, you could put that in the search box on the side under the “Hey, you made it” section.

And feel free to contact me any time.
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Kristi November 18, 2012, 2:39 pm

Thanks, Tammy! I’ll check it out now.
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Kristi November 18, 2012, 3:00 pm

Hi again, Tammy,
I just read your “Peeling an Onion” series (very good by the way). Mostly it confirms my gut feeling that my son Tucker is not autistic. Yes, he has some issues that fall on the spectrum but I believe every kid in the world has something that is on the spectrum. If it weren’t for his speech and language delay, I think the word “autism” probably would have never entered the discussion. Tucker never has a problem with routine change, could care less what cup he drinks from, is interested in other kids, shows imagination, initiates random play with us, etc.

I really like the list you compiled on how you helped Newt. In fact, I think it’s something that many families, those with and without autism in the room, would benefit by reading. The one thing we really need to work on (thanks for the reminder, we know, we know, we know but it sucks) is cutting off the TV. Before bed, it’s such a huge calmer for our son that it’s hard to not give in. But seeing how hard you worked, and your results, I’m going to try it!

Thanks. Love your site!
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Tammy November 18, 2012, 3:16 pm

That’s SO good to hear. I think I threw this into one of the posts, but if you haven’t run into it, you may want to check out “The Einstein Syndrome” by Thomas Sowell. It was crazy for us to read because our whole family turned out to be full of scientists, mathematicians, and musicians — something we never really thought about. I think kids just are who they are, and we’ve gotten to the point where we need to label every little thing.

Let’s stay in touch!
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Tiskaa January 7, 2013, 1:31 pm

Hi Tammy,

I just stumbled upon your bog with a ray of hope. Yes i am the new parent who is googling Autism in the middle of the night. My daughter T has a speech delay and doesn’t do well socially among her peers.
My ped suggested the evaluation and thinks it is Autism or Aeprgers coz she has repetitive behavior too. I am going crazy reading and googling the symptoms. She likes to read the same books over and over, not that much into TV may 15 mins of Mickey Mouse but there are lot of red flags. I am looking fwd to your story how you cured Autism. Please please post more frequently so that moms like me can benefit. I just need to get a grip on myself for my kid, i want to help her in every way possible.

Thanks so much.
Tiskaa.

Tammy January 7, 2013, 3:11 pm

Tiskaa, thank you so much for writing. I’m glad you found me. I’m sorry I’ve been so bad about keeping up on this. I’m working on another post about Newt and what he “looked like” as a young child. Sort of his history. If you go here, you can read all the posts I’ve done in a series called “Peeling the Onion.” That could help. And here are all the posts that have any tags with “Newt’s story.”

Please stay in touch! And I hate telling people to “Hang in there,” but “Hang in there.” And email me if you’re ever really losing it.

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