A Grandparent's Perspective: Growing Up With Autism
By Norm Roberts
My wife Lynne and I were in Florida this past weekend visiting our youngest grandson and his parents, Chris and Jenna. Weston is nine now and we hadn’t seen him in over a year. He has grown of course, is less verbal, speaks in a whisper if at all, and if anything is more affectionate than ever. When asked for a hug he will process that for a moment, then come over, stand sideways, and allow himself to be hugged. When least expected he would sit next to me, grasp my hand, and squeeze. He will make eye contact but only briefly. He can have his meltdowns but we didn’t see any of that in five days. He is a pleasant child, plays mostly by himself, and loves being outside where he can pace back and forth exploring the same small space over and over again. Wherever we went we set boundaries for him and he respected them. He must always be watched though. One thing he will not do is look out for traffic. Weston has classic autism.
Since before he was two Weston has received intense behavioral therapy from psychologists specializing in autism. As best we can tell it has been effective if far from a cure. He can speak but it is hard for him and he avoids it whenever he can. When he was younger he would practice echolalia, incessantly repeating a phrase he had heard, or the last thing said to him. Once he came home from school and out of the blue began reciting Hey Diddle Diddle. That seems to have stopped. He is toilet trained but has to be accompanied. In a disaster drill at school the children were herded into a bathroom and the lights went out. It was traumatic.
Jenna has decided it’s time to take some pressure off and allow Weston to develop at his own pace, so she has begun home schooling. It’s difficult. If he is interested he learns quickly and well. If not it won’t hold his attention. His worst subject may be arithmetic. He just doesn’t see the point in adding three oranges to four bananas to get seven fruit. His best subject is music. Even as a toddler he would sit at a keyboard and pick out distinct notes rather than banging in the way most little ones do. He has an enviable sense of rhythm. One of his therapies was in music. That was an exercise that wasn’t really work for him. His parents don’t allow music on his iPad though. He wouldn’t do anything else.
Most children with autism have physiological issues as well and Weston is no exception. Despite being very active he has poor muscle tone. When asked why his neurologist shrugged and said it was one of the symptoms. Several years ago he began having abdominal pains. His pediatrician didn’t see anything wrong with him but Jenna put him on a gluten/casein free diet originally developed for children with Chron’s disease. It worked. He’s off that now but still eats organic foods only. I’m not a big fan of organic but I don’t criticize. Heaven knows Chris and Jenna get enough of that from the so called experts. Weston is also extremely sensitive to loud noises. He is fascinated by trains and at a park next to an Amtrak station he recognized when a train was due, put his hands over his ears several minutes early, and stood near the tracks waiting patiently until the train came and went. He had his hands over his ears a lot while we were there. His parents count themselves fortunate. All of his issues are relatively manageable.
I asked Jenna what her thoughts were about Weston’s approaching puberty. It’s not something she likes to think about. I’m not worried though. She and Chris will deal with it when it comes, just as they have dealt with everything else. Their attitudes are positive. Weston is a blessing in their lives.
Jamie;
Thank you for answering.
I guess I will keep the coconut oil - glad to hear I am not the only one that is using it.
And twice a day use of ribose suggestion - I appreiciate too.
Posted by: Benedetta | May 30, 2011 at 09:40 AM
Benedetta,
We use ribose powder -- a 5mg scoop each morning and evening. Medium chain triglycerides (coconut oil and MCT oil) are great because they don't require a co-factor(?) to transport them to the mitochondria where they get chopped up and put to use. They bypass the ferry ride and rush in on their own. We love coconut oil and cook most anything requiring oil with it. My daughter loves the novelty of anything and requested spoonfulls of coconut oil for a week or so until the newness wore off. BTW, my daughter is 7 and weighs about 60 lbs. I hope you see the same results!
Posted by: Jamie | May 29, 2011 at 09:47 PM
Carolyn M
Thanks, it is so very kind of you to take the time to answer me. I think I will include the MCT too. Thanks for the heads up on the price.
I guess interruptions are just the nature of things.
Thomas Mittower: I bought my kids a plug of a horse, it was great for their balance, but mostly my son held it's head while I wrapped it poor hurting foundered feet.
But it taught my son compassion.
Posted by: Benedetta | May 29, 2011 at 05:46 PM
I too have a granddaughter, now 7, that happens to have autism. My daughter is doing quite well with her up bringing and managing the needs of her 2 younger siblings as well. I get to help out with getting ready for school in the mornings, putting on the braces (for toe walking) and bath time at least a couple times a week. I also give amature equine therapy. All the kids love it but the self-confidence that resulted in the oldest - quite remarkable! You can read more at www.buybabyblanketsnow.com/equine-center if your are interested.
Posted by: Thomas Mittower | May 29, 2011 at 03:22 PM
Benedetta,
I give 2 tsp. of MCT oil in a medicine dropper to my daughter. I tell her that it is "medicine" (as I do with any other supplements that I give her) and I have no trouble. I have not tried cooking with it. The brand I use comes in a 32oz. bottle and costs around $30; it also says on the label that it is pharmaceutical grade. You might consider trying MCT oil if you can find it for a price that fits your budget.
I know all about being interrupted while using the computer; I knew what you meant by that sentence.
Posted by: Carolyn M | May 29, 2011 at 02:08 PM
Carolyn M: Sorry about the unreadable last sentence.
Oh, I never get to write much with out being interupted around here, and losing my chain of thought.
Does your family drink the MCT oil or do you put it in your cooking. I know it is meant to be drunken all by itself.
Andrea and Anne S:
The organic comment:
Probably because anybody can put the word organic on a label and that food is not prepared any different than any other food. Also the price that is charged because of that word "organic" is totally - just totally over priced. I want healthy food, but I don't like to be taken advantage of (like everybody els).
Posted by: Benedetta | May 29, 2011 at 01:29 PM
Carolyn M
Thank you so much. I was going to see what everyone on AoA ordered and used, but I was so excited about the mention of ribose and then other information I found out about it --- that I went on ahead and ordered the ribose "pills" before I received your answeer. I will order the powder though - good to hear what others are doing.
The cashews, and medium chain oil I do know it helps somehow and you can consume more carbs - I have been using coconut oil in my cooking because of that. But I have to wonder if that is any benifit, and maybe I should order the MCT oil? Does yours drink it straight or do try to hide it in what you cook?
Posted by: Benedetta | May 29, 2011 at 01:13 PM
I'm always so touched by the grandparents who get in the autism trenches with their children and grandchildren.
I've enjoyed reading all your articles Norm. Please keep them coming.
I too was a litlle perplexed about the not being a fan of organic comment maybe you can explain what you meant.
Many of us don't have the unwavering support and intense interest of our own parents. Your kids are lucky.
Posted by: Andrea | May 29, 2011 at 08:45 AM
Benedetta,
Ribose will dissolve in liquid. It does have a (mildly) sweet taste. I don't know if there is a pill form; the powder we use comes with a scoop. I use one scoop for my daughter but I use two for me.
Regarding what Jamie said about medium chain triglycerides, MCT oil can be found in some stores.
Posted by: Carolyn M | May 29, 2011 at 12:11 AM
Jamie:
The ribose powder how much and how does it go into the body?
Does it go on to food? Does it have a sweet taste?
OR do you do pill form?
Thanks
Posted by: Benedetta | May 28, 2011 at 03:57 PM
"I’m not a big fan of organic"
I have to ask...how could you not be a fan of organic?
Organic means grown without pesticide. Organic usually means grown with proper soil that actually has nutrients. Organic, when it comes to livestock, usually means the animal was not part of a CAFO. Organic means the farmer actually cared enough about the crops he/she was raising to do it right, as opposed to dumping chemicals and allowing genetic modification.
How could you not be a fan?
Posted by: Anne S | May 28, 2011 at 08:34 AM
Supportive grandparents are awesome! Not all of us have that -- especially with regard to our odd diets and bundles of supplements.
I have to speak up about the low muscle tone -- Don't accept that it's the way he's wired. My daughter was born with low tone (I think she was born with chronic fatigue). She was a floppy baby with poor sleep and delayed physical development across the board, but she walked at 17 months, so we were told that she was "normal" but would always have low tone and be clumbsy. At age 7, (this year) we started the biomedical approach, eliminated all the food triggers (we are now paleo) and started some great mitochondrial energy supplements that have virtually healed her fatigue and low tone in 2 months. We started with coQ10, carnitine, magnesium citrate, and lots of cashews (for the medium chain triglycerides). When we added 5 grams of ribose (2x/day), the magic happened overnight! Ribose is a sugar that helps our bodies recover from an anaerobic workout (it forms the backbone of ATP). Our bodies can make it from glucose, but only when energy is abundant. My daughter never had abundant energy, so everyday activities just wore her out. Her cells were starving for ATP that her body just couldn't make. ATP is the basic energy used by every living cell -- I've heard our brains receive 20% of our bloodflow and use 25% of our glucose. Mental fatigue goes hand in hand with muscle fatigue. In 2 months we've seen so much improvement in our daughter's strength, stamina, coordination, and mental clarity. She's on top of her game, now. I wish you all the best!
Posted by: Jamie | May 27, 2011 at 11:27 PM
Norm, we did exactly the same thing with our son as your Jenna did with Weston: we tried the gluten-free/casein-free diet, it worked, and after a couple of years, we tried gluten and casein on him, and he didn't react, so we put it back in his diet, gradually.
We didn't see any reaction...for a long time.
It took several months, maybe even a year before he started having sporadic mild intestinal problems.
Then, suddenly, they weren't mild.
Coincidentally, I was diagnosed with celiac around this time, and took gluten off our menu, and our son't intestinal issues disappeared.
If gluten-free worked once, I would keep Weston off it forever. It's almost always an autoimmune response that causes the problem, not an allergy, and autoimmune problems cannot be outgrown like allergies. They can HEAL, which makes you think they've been outgrown, but autoimmune problems will return.
Dairy is different. Our son is okay with dairy now. But when his gut was gluten-damaged, dairy prevented it from healing (because the gluten-damaged villi are too damaged to produce lactase, so the lactose doesn't get properly digested, and irritates the villi).
Organic, raw milk may be very helpful, if Weston is not sensitive to it.
I also wanted to suggest violin lessons for him, and not just any violin lessons, but Suzuki violin lessons. He's at the right age, and although the method was developed for "neurotypical" children, it's PERFECT for autistic kids. It involves lots of repetition, which they love, but it teaches them eye contact, blending with a group, and turn-taking. And lots of listening to a CD. It teaches EVERYTHING that auditory processing therapy teaches, but they come out of it with a skill and a peer group.
Make sure you find a teacher who is CERTIFIED to teach Suzuki violin. Many teachers use the Suzuki books, but don't know the first thing about the actual method. The method is VERY important!
Posted by: Taximom | May 27, 2011 at 06:27 PM
You sound like a very nice grandpa, ready to love your grandchild just the way he is. Your grandson is beautiful, and he resembles your wife!
Posted by: Leila | May 27, 2011 at 01:43 PM
Your beautiful grandson reminds me of my son, Noah! So many commonalities there. As a parent, I just want to thank you and your wife for showing the support you do. Both my parents and my husband's parents have been incredibly supportive and helpful in our journey with Noah. It makes more difference than I can say.
Always like to share what we've learned, as that is how we've been able to make so much progress with our son because others have shared. Check out BrainPop on the internet for great animated teaching videos. Check out iamlodge.com for middle school curriculum put to music. Check out LDN for a great, no side effect immune booster medication to try. It did things for my son I never dreamed.
I'll bet Weston knows more than anyone could even imagine! We've found that to be true of Noah.
Posted by: Allison Byrd | May 27, 2011 at 01:36 PM
What a beautiful child, what a beautiful family. How wonderful that you can give Weston (and his parents) such unconditional love and acceptance.
Posted by: Donna L. | May 27, 2011 at 12:14 PM
Weston is adorable and your perspective is a touching one. Thanks for sharing your experience!
Posted by: luckymom2D | May 27, 2011 at 10:52 AM
What a lovely article. Your childeren and Grandchildren are so lucky to have you in their lives.
We too have a supportive family and it makes all the difference in the world.
Your article made me cry but mostly due to the love it shared.
Thank you.
Posted by: Pamela Preschlack | May 27, 2011 at 10:07 AM
Great to see such supporting grandparents! Norm, Jenna may want to see if there are any math programs for the iPad or the PC that approach math from a musical point of view. Years ago I had a physics professor who had come to phsyics from music...after discovering the mathematical foundation of music. With Weston's interest in that area, it is entirely possible that he might process the concepts of math better if he could approach them from a musical point of view. (1/2 notes, 1/4 notes, chords, etc.) We know that people with ASD often store information in their brains in ways that are different from us neurotypicals. Just an idea...
Posted by: Vicki Hill | May 27, 2011 at 09:43 AM
You sound like fantastic, supportive grandparents! The love in your heart is so evident and your children and grandson are so fortunate. Not all of us are this lucky. I will keep Weston in my prayers along with all the other children trying to navigate through this world with autism. Thank God he has you and his dedicated parents to point the way. God bless you.
Posted by: Concerned Mom | May 27, 2011 at 08:46 AM