Social skills classes for kids recovered from autism

Nate will be 10 years old in less than 2 months (!), and he is doing very well. He does well in school, has good friends at church, has several interests, and is a responsible boy. While we continue with our wholesome nutrition and natural medicine lifestyle, we still want to do all we can to help him have the tools he needs to succeed. So last year, he began going to a once-a-week social skills class, and it has been fantastic. What is interesting is that this type of class is almost nowhere to be found for kids Nate’s age! There are therapy offerings all over the place for young children, but what about when those young children do well and “graduate”? There is almost nothing for them when their “quirks” start standing out among their peers.

At 5 years old, Nate was considered “recovered” from autism and no longer qualified for a diagnosis. He was doing great! But it didn’t mean he was a different child; he was still Nate and still had his quirks. He loved touching babies’ hair; he would often talk about topics he wanted to talk about and never thought to ask questions or seek to understand others’ feelings; he was extremely literal and precise (“Teacher, you said we would be going outside at 10:00, but it is 10:01.”); he had a constant desire to be first (in line, through the door, etc.). But other 5 year olds never noticed those quirky behaviors or at least didn’t think anything of them. Fast forward 3 or 4 years, and those quirks started standing out. Eight-, nine-, and ten-year-old kids notice a lot more and, while they’re exploring their own identities, they begin to point out differences they see in others. Those kids who were quirkily cute at 5 years old are now annoyingly different at 9. To make matters worse, dealing with slight ridicule and letting things roll off one’s back and navigating “playground politics” are tools that especially don’t come naturally to kids like Nate. It’s a vicious cycle!–because kids who lash back at and respond poorly to slight ridicule are often the ones who begin being more-than-slightly ridiculed.

So while our “recovered” kids are often extremely smart and do well academically–and therefore are not deemed to need any assistance–there is a great need for social helps in middle and later elementary school. And the need for this type of service will only increase, as more and more 2- and 3-year-old boys and girls are being diagnosed on the spectrum.

At the center we go to (http://www.kellymckinnonassociates.com/), classes are filled with 4 to 6 close-in-age peers, and they work on lots of things in one hour! Here are some things Nate’s class has worked on or works on every week:

– impulse control
– how to work as a group on things like choosing and playing a game
– sportsmanship
– talking about the difference between “laughing at” and “laughing with”
– remembering to ask questions and listen to others’ responses
– what types of topics are good for 9- and 10-year-old boys to have conversations about (besides just Minecraft)
– therapist takes video of the kids talking with each other and then goes over the video to point out good things and areas for improvement (usually interrupting and not listening)
– how to greet each other (no hugs)
– what to do if you feel like crying at school (and talking about how they’re now too old to do that)

This is not “play-based therapy” where the kids don’t know why they’re there and think they’re just playing. This is a social skills class where Nate knows he goes to learn “how to be a better friend and make friends.” The therapists get the most out of each hour in training, reminding, and helping the kids–which I appreciate. We have been thankful for these classes and have seen improvement in Nate’s interactions at school!

2014 check-in

Some days, it feels like a lifetime ago that Nate was a nonverbal two year old struggling with meltdowns, eating issues, sleep issues, communication problems, etc. Other days, I feel like it was just yesterday I had to follow him around at the playground to remind him how to play, or ignore dirty looks in the grocery store check-out line, or make quesadillas and ketchup for lunch every day, or attend dozens of hours of various therapies every week.

Today, Nate is in 4th grade at a local public charter school, with no aids or services. He is a very smart boy. He loves video games, but since we limit screen time to weekends, he also loves reading, rainbow looming (creating rubber band bracelets), riding his bike and scooter, playing Legos with Levi (who is now almost six years old), and swimming. Socially, Nate is doing so well, when you consider that the things that come naturally to other kids (understanding joking/kidding behavior, just “getting” regular nine-year-old-boy behavior) are things he has to practice. Nate doesn’t play tough like other boys his age; he doesn’t make fun of other kids or understand when other kids make fun. A couple of months ago, we started him in a one-hour-a-week after-school social skills class to help him learn and practice some skills (sportsmanship, learning the difference between “laughing at” and “laughing with”, reining in tendencies toward bossiness). I’m hopeful he’ll take these lessons to heart, as sometimes those things are learned easier when coming from someone other than mom and dad (I think we must start sounding like Charlie Brown’s parents after a while).

I consider Nate a success story. Anyone who knew Nate only when he was two or three years old and met him again now for the first time in six-seven years would not believe he’s the same boy. Even people who are familiar with autism are surprised to learn he used to have a diagnosis!

So, what do we do to keep this success story moving in the right direction? Here is what our lifestyle looks like now:

  • whole, healing, nourishing nutrition
    • we still do not eat gluten, casein, soy, or sugar… but it’s more than that. We eat a whole foods diet with lots of good fats, properly prepared grains (soaking, sprouting), fermented foods, animal proteins, grass-fed butter (yes–butter!), fresh vegetables and some fruits, properly prepared nuts and seeds, and good-for-you treats (made with raw honey, grade B organic maple syrup, raw cacao powder, etc.). This is no longer the GAPS diet, but I credit the GAPS diet with revolutionizing how I look at food and nutrition for our kids.
    • daily probiotics (HMF powder) and cod liver oil
  • homeopathy and natural remedies
    • UNDAs (through our naturopath)
    • colloidal silver – we have completely healed pink eye and ear infections (also garlic oil)
    • no antibiotics, no ibuprofen, no acetaminophen
  • therapeutic-grade essential oils
    • not only are essential oils fun to use, but also, combined with a healthy lifestyle of nutrition, good sleep, etc., they are extremely effective.
    • contact me in the comments section if you’re interested in learning more about oils; I do sell them
  • very few visits to the regular doctor
    • we are empowered to take care of our own health and our kids’ health!
    • no vaccinations

The picture of our lifestyle now is quite different from eight years ago. I can safely say I would have done nothing on this previous list eight years ago. But I also don’t want to think about what our lives might be like now if we hadn’t been on this journey full of positive changes. I believe Nate would not have made such strides; I believe we would all be getting sick much more often; I believe we would still struggle with behaviors–in all of our kids; I believe school–friendships, focus, stress–would be very difficult. I am glad for the road we have been on!

2011 Update

Nate is now a 6-year-old, thriving boy. As he approached his 5th birthday, we had our last IEP with the school district, where they had great things to say about him and recommended full mainstreaming for kindergarten. We said goodbye to special education, and we haven’t looked back! Nate went to kinder at a small private school with no aids or services and loved it!

We are still going strong on the GFCFSF diet and have put Nate’s brother and sister on the diet, too. (In fact, Levi, who is almost 3, has been on the diet since he began eating solid foods!) We see such positive results from this change alone. We do still follow many of the other treatments we started several years ago: probiotics (right now we use HMF Powder by Genestra), fish oil, folinic acid, zinc, l-taurine, DMG, and we just phased out mb12 shots.

Nate is super smart and sweet, is a good singer, is great at memorizing, loves to read. He is well ahead of his peers academically.

His struggles include a strong desire to always be first (and not let others go first) and overreaction to consequences (for example: if I tell him he must stay in his room for a time out for a certain amount of time, he almost can’t handle the confinement and will just fall apart. Or if I say he needs to stop talking and say no more words–perhaps if he was fighting or yelling in the car–he flips out as if not being able to say the next word is going to kill him). And, while he adores babies and also loves being with older kids, he sometimes has trouble with kids his own age. He always wants to be in charge, and so he often butts heads with other kids who have strong personalities too.

I am so thankful for our son. I will keep updating this blog in the hope that it might help someone else! 🙂

Great info for parents suspecting autism

I was pointed to this blog post with some great information for parents on what to look for regarding “normal development” of babies.

Here’s a pertinent excerpt:

Baby B.L.I.S.S.*
For our purposes, I have developed an easy way to remember the signs to look for as your young child is developing. When making a diagnosis, my colleagues and I focus on a baby being able to do several early developmental skills around social interactions and play. I have also created some short video clips showing these skills as they begin to develop. The video shows what your baby should be doing by their first birthday for each part of the acronym: B.L.I.S.S.
B = Babbling- your baby should be playing with vocal sounds a lot, making a variety of vowel and first consonant sounds such as b, d, and m – think mama, dada, baba, etc.
L = Looking – this involves your baby looking at you when you talk, looking back at you when they are playing to “check in”, and looking at something you point to, to see what it is.
I= Imitating – your baby should imitate your basic play actions such as clapping hands, waving bye-bye, blowing kisses, or banging blocks together, etc.
S= Sharing – your baby should share enjoyment with you by laughing and giggling for familiar games such as peak-a-boo, or “Sooo big”.
S = Showing – your baby should hold objects up to you to “show” them to you. They often won’t let go of the item, but they want to get your interest in what is interesting them. If they are walking, they may “bring” it to you to show you.
So this is the new kind of baby B.L.I.S.S. I hope every parent becomes aware of and I want you to remember it for yourselves and for all of your friends. Remember, if your friends or family have concerns, by just starting with these questions, you will know almost immediately if you should have an autism specialist take a look. It is important to note, this is by no means a diagnosis, it is just a way to be aware of the early signs so that if this is what it is, the correct course of action can be taken and a diagnostic assessment can be done as soon and as early as possible.

In our experience (although it’s getting harder and harder to remember–it was 4 years ago now!), Nate really lacked in the “Babbling” and “Showing” areas. The other areas were also delayed, but not as severely.

2010 Update

Nate is now 4-and-a-half years old, and as of his latest appointment with his DAN! doctor, in December 2009, we now consider him officially recovered! Even his skeptical-of-alternative-treatments neurologist admitted back in March that, if they were to redo the CARS test on him, “there is a high likelihood he would not place on the autism spectrum at all.”

Sometimes I take for granted how far Nate has come. Here’s a glimpse:

Then (2.5 years old, before the diet and most other interventions)

Now (4.5 years old)

Nonverbal, just a few signs (“more,” “all done,” “please”) Extremely verbal up to and beyond peer level. Neurologist, who says she can just “hear” autism when a child with autism speaks–something in the inflection, the stilted meter, the way the child speaks, proclaimed she can’t hear it in Nate. She used the words “best I’ve ever heard” about Nate’s language.
Meltdown or tantrum if made to stop a desired activity Much more go with the flow and “roll with the punches.” Still enjoys routine and being “in charge” and self-directing activities, but no rigid adherence. Can be reasoned with.
If he wanted something, he would just go and wait at the object instead of communicating (e.g., if he wanted something to drink, he would go stand by the refrigerator) When Nate wants something he can’t get himself, he comes and asks (e.g., “Hi Mama, may I please have some juice? I’ll get the cup.”)
Up several times crying at night; awake early (5:00 to 6:00) each morning Bed time at 8:00 p.m. with night waking very rare (perhaps once a week). Sleeps until at least 5:30 a.m. but stays in bed until 6:00 or later.
Desire to play with peers but no understanding of how to play with them (e.g., he liked to play chase, so he would go up to a peer, stare at him/her, then run away hoping he/she would chase him) Nate has no problem interacting with peers, and his way of playing is indistinguishable as “different.” While he doesn’t ask many questions about others or wonder about their feelings often, he is polite and loves to play.
Diet consisted of quesadillas, pizza, yogurt, cheese, chicken nuggets, fries, bananas, waffles, and baby food fruits—basically, LOTS of gluten, casein, and soy. Diet is not extremely varied, but it is free of all gluten, casein, and soy. A typical week for Nate includes pancakes for breakfast (GFCFSF mix made with extra nutritious goodies mixed in), banana, dry cereal, fruit leathers, hamburger patty, GFCFSF bread, peanut butter, bacon, blueberries, and small bites of whatever GFCFSF thing I make for dinner.

 

We are so thankful for Nate’s success. We believe the following interventions have been most successful, with God’s help.

  • The GFCFSF diet. Whenever we wondered whether this difficult-to-follow diet was really working, Nate would accidentally get gluten (or casein or soy) somehow, like accidentally being given food with an unknown ingredient or being given the wrong snack in class at church. And then we would pay the price in his behavior for a day or two: prolonged meltdowns over the slightest thing (a parent saying he can have juice in just a minute), uncharacteristic whining, crying.
  • Consistency between therapy and home. We started using the same language and prompts the therapists did with Nate, requiring he communicate to the best of his ability instead of just giving in to his tantrums or meltdowns.
  • mB12 shots. While these didn’t provide a huge jump in skills for Nate like they have for others, we did notice they help him accept changes in routine better. They make it easier for him to go with the flow, to order his world. (We noticed this when we did a challenge/re-challenge where we stopped the shots for several weeks, then reintroduced them and watched for changes.)
  • The guidance of our DAN! doctor, who helped put together the right combination of supplements and vitamins for Nate.

Nate will enter kindergarten in Fall 2010, and we anticipate he’ll be recommended for full inclusion in a general education setting. We are so proud and excited. 🙂

Telling Nate

Recently, Nate came with me to run a couple of errands, and we stopped first at Starbucks. While I drank my coffee and Nate drank his apple juice, I asked, “You’ve heard how sometimes I say that you have autism?”

“Yes,” he replied.

I asked, “Do you know what that means?”

“Yes!” he said. “Well, no. I don’t.”

“It means there are extra special things about your brain,” I explained. “You know how you’re really good at some things? Like you can read? I don’t know any other 4 year olds who can read like you can. And what else are you really good at?”

“Playing games!” he chimed in. “And playing cards!”

“Yes!” I agreed. “And you can remember things really well–you have a great memory. And you are so smart.”

“Yes, I am,” he beamed.

“Those are some of the extra special things about your brain. And of course, there are things that are harder for you, too. Like you know how you have a hard time letting others go first?”

“Oh yeah,” he dismissed, already thinking of changing the subject.

“Well, that’s what autism means for you. You just have extra special things about your brain. Cool, huh?”

“Yeah! Cool!” he replied.

And then we were on to a new subject, and that was that.

2009 Update

Nate is such an amazing little boy. He is now more verbal than many of his neurotypical peers. He has been able to read for several months now (self taught). He loves other kids and enthusiastically greets everyone by name (he has an amazing memory, especially with names). He courageously endures all of his treatments, including yucky tasting daily supplements, b12 shots every 3 days, and a restrictive GFCFSF diet. He is so joyful, energetic, smart, and sweet. He has a new little brother, Levi, who is 4 months old now; Nate has been nothing but sweet to him since day one.

We had an appointment with Dr. Mumper at Rimland Center last month. We went through Nate’s current supplement routine, adding a few new elements (magnesium each day to help with his auditory sensitivity/defensiveness; we reinstated cod liver oil to decrease visual stimming/using peripheral vision; we also reinstated probiotics, especially for if/when he goes on antibiotics; glutathione lotion, which has myriad benefits; and a 10-day course of two strong antibiotics to nip some possible clostridia in the bud). Dr. Mumper also recommended we take Nate back to the neurologist who originally diagnosed him two years ago, because she believed Nate would no longer qualify for the diagnosis! I have made an appointment with the neurologist for the end of this month; from what I know of her, she would be very reluctant to remove a diagnosis from a child, but Nate would still score much lower on the CARS test he originally took.  (His score in March 2007 was 43.5, which placed him in the “moderately autistic range.”)

When Dr. Mumper asked us what one treatment we believe has helped Nate the most, Jon and I agreed it is the GFCFSF diet.

Nate’s next IEP is in April. I’m very interested to hear the things his teachers will say about him, since they will have had a year with him. We are optimistic about Nate being mainstreamed by kindergarten (which will be September 2010), as I can already see Nate starting to bring home more negative than positive behaviors from his peers at school. We love this amazing boy!

P.S. After reading some of my older posts, I realized I should also update that Nate is now a good sleeper. He goes to bed at 8:00 (usually plays in his room, but then turns out his light and is in bed by 9:00) and almost always sleeps until 6:00 or a bit later. Waking/needing one of us at night is rare for him now–and it has been for probably 5 or 6 months.

One step back, two steps forward

Jon and I have noticed an interesting trend: when we stop a certain treatment (or all treatments) for Nate for a short period, he has a major regression, but when we start everything back up again, he jumps forward amazingly! (It’s kind of like one step back, two steps forward.) We have never intentionally stopped treatments, but things happen (shipments get delayed or backordered, or a diet infraction occurs, etc.). I can think of two of these events off the top of my head, but I know there have been others:

  1. Way back when we were only doing enzymes (not diet, no other supplements), I ran out of both kinds, and they were backordered on the website I order them from. In in the interim, I went to a local health food store and got some enzymes, but they were not high quality and had such a low concentration of enzymes that it was essentially like giving Nate nothing. In that week, he started whining/fussing/crying all day like he used to and had many more meltdowns and tantrums. At that point, he really didn’t have much language anyway, so he didn’t lose much in that area. When the correct enzymes finally arrived, I started Nate back on them full force. Within a day to two days, he was back to being happy and bright-eyed. And he started saying words, including “hi” and “bye bye” for the first time ever, unprompted.
  2. The second example occurred this past month. Nate got a stomach bug and high fever on Thursday, June 19. He couldn’t keep anything down, so I did not give him any of his vitamins, supplements, or enzymes (total of about eight separate items right now) all of Thursday, Friday, and some of Saturday. Even after his fever broke and he was eating a bit, he was whiny and cried most of the day for no reason, not really using words much of the day. He got many of his vits/supps on Saturday, and I started everything back up on Sunday (including his melatonin). Sunday night, he slept through the night. This is very, very rare. Monday night, he slept through the night. I can’t remember two nights in a row of sleeping through the night in months. Tuesday night, he slept through the night. Wednesday night, he did wake early in the morning and come down to our bed, but he did it quietly (in the past months, when he wakes, it is with loud crying, and Jon has to go get him). So, in the past week of nights, he has slept through the night many nights and only cried one time. That is monumental for him. We are all getting more sleep!

It is encouraging to figure out that the things we’re doing for him are working. His jumps forward might also indicate that he would do well with higher doses of certain things, but I don’t know if our family wallet can manage that right now. 🙂

Our current treatment plan

Since every child on the spectrum is different, this supplementation plan might only be best for Nate. I’m writing it down for myself to keep track.

 

Enzymes (we just switched from Zyme Prime and Peptizyde to TriEnza, which contains ZP and Pep in addition to No-Fenol. No-Fenol helps with some fruits and vegetables, and I wanted to add it in because Nate eats a lot of ketchup). With every breakfast and dinner (and would be lunch but I don’t send them to school).

 

GFCFSF diet (i.e., gluten-free, casein-free, soy-free). Still the best change we have made for Nate.

 

Methyl-B12 injections (one shot every three days). These are easy to give now. Nate loves his reward (10 Starburst brand jelly beans, which are gfcfsf–Jelly Belly brand isn’t GF).

 

Dimethylglycine (DMG). Part of methylation. We’ve been using a liquid form from Kirkman, but I’m getting some good-tasting chewables next. With breakfast and dinner and might start sending to school for lunch.

 

Taurine. Part of methylation. Once a day (breakfast).

 

CoEnzyme Q10. The ones we’ve gotten taste good, so Nate loves taking these. They help with energy production and (I think) immunity. 2 chewables each at breakfast and dinner.

 

Multi-vitamin. We’ve been using Kirkman’s basic chewables, but for my next group order (ordering as part of a group gets a discount), I’m going to get a more specialized vitamin.

 

Probiotics. Nate’s DAN! doc likes Klaire Labs, so I got these. Once a day.

 

Liquid calcium. To offset the reduction in calcium from the diet. Once a day.

 

Melatonin. This has been a blessing. We started giving a 1mg “sublingual” (supposed to let it melt in your mouth) to Nate a half hour before bed time after his last DAN! appointment, and we’ve worked up to 3mg (mostly because he loves the taste). This has helped him fall asleep at a much more reasonable time–almost always before 9:00 now, and usually within about a half hour of taking the melatonin. It had gotten to be close to 10:00 many nights, with him still waking during the night and often waking for good at 5:00 or 5:30 a.m.

 

What we’re adding next:

 

Folinic acid. This is also part of methylation, and I should have added it in already. I always hate the possibility of the hyperactivity side effect! Some of Nate’s sleep problems started when we began all of the supplements with this side effect.

 

Liquid carnosine. Another hyperactivity possibility, but reports are really positive about the language and social development this supplement seems to foster.

 

L-carnotine.

 

Fish oil. We used to give cod liver oil, but I didn’t stick with it. I will probably order some fish oil and cod liver oil this month.

 

Easy exemption!

Yesterday, I brought all of Nate’s registration paperwork to his new school. To my surprise, they put up absolutely no fuss about his not having any immunizations after 18 months. I had brought a letter stating the state law that he can’t be denied entrance into the school, but I didn’t have to bring it out; I just signed their exemption request. Woo hoo! He starts this Friday, May 2, the day after his third birthday.

Here are some helpful links I used in the past few weeks: