Autism is now so pervasive – and awareness has been raised so much – that it’s safe to say that nearly every American adult now has some connection to it. It may be a co-worker, relative or friend – but chances are they know someone who has a child who is on the spectrum.
I think that many people who are not immersed in this world have very little idea or understanding just how consuming autism is for parents. And I want to be clear, this statement is not intended as complaint or criticism – it’s simply a fact.
As Stone (and Ty) near their 6th birthday, I thought I’d write a post that tries to shed some light into how much Stone’s autism impacts not only my life – but also the rest of the family.
First, the good news: Stone continues to be a very happy and fun boy. He spends much of his time smiling and laughing – and now engages with us much more than before. His favorite game with us is “chase” – where he gets to run all over the house (or roll back and forth from one side to the other) eluding us. He and Ty are also interacting much more than before – with similar games of chase. Stone also likes to swat Ty (and others) when he’s extremely happy and running around. This is a behavior we’re trying to work on, as most kids don’t understand that Stone is actually happy when he’s running around whacking them.
The other good news is that his sleeping has improved dramatically over the past three months (since we brought him in to a naturopath and put him on some new supplements – more on that later). As many people who know me know all too well, the past few years have been very difficult from a sleep perspective. There have been countless nights when Stone woke up at 11, 12, 3 or 4 in the morning – and was wide awake and wouldn’t go back to sleep. There were months when this happened four to six times each month. Obviously, this sleep deprivation had an impact on me.
Ironically, even though Stone is sleeping more, I now find myself more tired and drained than I have been in the past few years. But a visit to my own naturopath convinced me that this is actually quite normal. After being on “alert” status for so long (and going without steady sleep for an extended period of time), my body is now simply trying to catch up.
As I mentioned, the improved sleep has been a major positive benefit from our naturopath visit and the launch of a formal treatment plan and program. Because communication (and the lack thereof) continues to be a major challenge for Stone, the ND recommended a series of supplements and vitamins to try to improve this situation. Here is a snapshot of this now daily routine:
Every morning and night, Stone receives 2.5 ml of Nordic Naturals Ultimate Omega ($42 for 4 ounces). It’s lemon flavored and slightly oily – but he drinks it as we give it to him through a syringe. He also receives 2.5 ml of liquid CoQ10 (orange-pineapple flavored) ($25 for 100mg). Again he drinks it through a syringe and is extremely cooperative each time. Both of these are supposed to be great “brain food” and should help his communication and other cognitive areas.
In addition to these, every night he also receives 1/2 teaspoon of phosphatidyl serine powder ($70) and 2 teaspoons of phosphatidyl choline powder ($35). Because these are both powders, it’s been a little trickier administering but we’ve had pretty good success mixing it with gluten-free frosting and feeding that to him. We think that these have had the strongest impact on his improved sleep as that was listed as one of the potential benefits. I also make sure he takes chewable vitamin D and C each morning as immune systems are sometimes weakened in kids on the spectrum.
We also received a prescription for Vitamin B-12 shots ($140 for 10 shots). I was very excited to start this treatment because I had heard so many positive stories from other parents who said that the vocabulary and speaking skills of their autistic children vastly improved after starting the shots. Many parents and experts had recommended giving the shots when the child is asleep in bed – but given our history of sleep issues with Stone, we were afraid of waking him up again so we opted to give him the shots while he was awake in the mornings. Initially we tried to trick and distract him a bit – but this didn’t work too well as he wasn’t too happy when he was surprised with a shot. I finally just started telling him it was time for his shot and asked him to take down his pants for me – and he did so (and continues doing so). There have been a couple of times he clearly wasn’t in the mood, but he eventually cooperates enough to allow me to give the shots.
Have we seen an improvement in his communication? We think so – but nothing as dramatic as the stories we’ve heard. However, I’ve also read that this treatment sometimes takes many months (and years) before one will see strong gains. Again, the goal is to help heal a brain and system that has been injured. It’s impossible to know or predict how long it can take with one child compared to others. And Stone continues to work and try hard. We have noticed that he is definitely more vocal and verbal than before – he’s just still having trouble forming strong words. So the fact that we have seen some progress (and continue to do so) is definitely a positive.
This first round of treatment was all based on Stone’s health history and some of the results of earlier blood/urine tests we ran on him when he was 4 years old. But because we want to know exactly what’s going on in his body in terms of missing vitamins, supplements, blockages, etc. we have to again run a series of new tests. The first test was a stool sample and it required us to collect samples on 3 different days/occasions (which was then shipped to the labs). I’ll spare you the graphic details of the exercise but suffice to say it was a real challenge to create a system that allowed us to collect samples (Stone usually likes to find a bathroom and hide to do his business). And the rest of the process was, well, an interesting experience (I’ll leave it at that).
We also had to send in samples of his hair to be analyzed – and not just a little. We had to have enough hair that it caused a small paper scale to tip. Given how much Stone hates having his hair cut, it was again quite the challenge trying to get him to sit just for us to cut the amount needed for the test.
The final step will be a series of tests based on blood analysis. However, he needs so many different tests, the ND is concerned we may not be able to draw enough blood in one visit – so this may require a trip back. I’ve been procrastinating on this test due to timing/schedule issues (between his various commitments and my work) – and also dreading what a huge hassle I know it’ll be trying to hold him down long enough to get the blood (and dealing with his screaming and crazy strength). But I know it has to be done so my goal is to get him in for at least the first blood draw later this week.
One of the other major challenges for us is trying to keep Stone on a gluten-free and casein-free diet. It’s been relatively easy keeping him away from dairy and items that contain casein (although he will try to scarf real cheese if given an opportunity). Gluten is just a bigger challenge because it’s in so many different types of food.
Stone has been good about eating gluten-free cereal we buy but when our Au Pair decided to start eating Honey Bunches of Oats – Stone went crazy for that and started eating tons of it. We actually noticed a bit of speech regression (as did his speech therapist) over a week or so and remembered this coincided with his Honey Bunches of Oats feeding frenzy. So we had to remove the cereal from the house and explain to Hany why we can’t have it around (she completely understands thankfully). But it’s clear that Stone literally craves gluten at times – so when he has an opportunity to eat it, he just won’t stop. Continuing to manage this as he gets older will remain a big challenge, I’m sure.
Probably one of the most frustrating aspects of dealing with autism is the lack of communication – especially in times when Stone is hurt or in extreme discomfort. He received a couple of nasty cuts during the summer – one on his toe in July and another on his knee in August. And in both cases it was very hard trying to treat him as he was crying hysterically and didn’t want any type of Band-Aide on his body. We think this has to do with his ultra-sensitivity to touch/feel but he really won’t keep a Band-Aid on so we had to deal with open wounds very carefully.
And even when we think it might be healed, it was very easy to open up/injure – and this would start the process all over again.
This happened on Labor Day as I took the twins to a beach in Kirkland and met some friends and their son. The warm sunny weather was ideal for swimming/wading – and Stone was having a blast in Lake Washington. But while running through the water he tripped and fell just enough to bang his knee against a rock – and the knee was instantly bleeding again and he was in extreme pain. His crying and yelling was creating quite a scene and I tried to hold him and calm him down – while trying to stop the bleeding. Fortunately a very nice family near us came to help – giving me a paper towel and also some bandages. I was able to collect our items and place Stone’s 50-pound body on my shoulders and carry him (still crying) four blocks to the car – with Ty tagging along and helping as much as he could. It was one of those situations I just wished I could talk to Stone more/better – and where I know he was so frustrated because he couldn’t express how/where he hurt the most. Hopefully some day we’ll get to the point where this is no longer an issue.
There are so many other areas and aspects about raising a child with autism (such as the ABA therapy, occupational therapy, speech therapy, special kindergarten, etc.) that I can’t even do it justice in this post – maybe I’ll just have to save those for a Part II another time. But as you can see, there is much that goes into caring for a child on the autism spectrum – even one as highly functioning as Stone. And remember – this is a population that is growing, with estimates of 1 in 60 boys being diagnosed with the condition.
David Kaufer is a fun-loving Super Dad of 5-year-old twin sons, an insane Oregon Ducks fanatic (follow him on Twitter @DavidKaufer), advocate for green/sustainability and autism issues, and connoisseur of Northwest microbrews. He and his wife Renee moved to Edmonds in 2005 to raise their family (and enjoy the gorgeous views).