The Blessing of Balance

My 4 year old gave me the gift of perspective today. He seemed to make a point throughout the day to remind me of not only the challenges of parenting in general, and the added challenge of raising a special needs child, but also reminded me of how much joy there is in being his mother.

Too often parents are quick to forget this balance when faced with day to day stresses of being so responsible for someone else’s well being. I frequently get caught up in negative emotions and react to situations I ought to think through more carefully. The gift of perspective however makes me realize how true it is that every action indeed has an equal and opposite counterpart. For every time my children bring me to anger, for every tear, for every feeling of resentment, there are just as many if not more moments to be grateful that I have the privilege of mothering them.

As parents, our responsibilities are so great, yet our blessing of creating life and guiding it through maturity is equally great. I am inspired to try a little harder and think a little deeper every time I deal with a tantrum or a mess, or anything more jolting. I am inspired to remember the treasures each day will inevitably hold, even if only long enough to temper my reactions.

Today’s gifts included a walk up and down the street, hand in hand with my beautiful little boy, as I watched him look at everything; and watching him slip into peaceful sleep in my lap, concentrating on every note of the lullabies I sang him. For these gifts I am eternally grateful, and for the gift of tomorrow to experience more examples of perspective and balance.

- Adrienne

Picture This

Most in the Autism universe know the value of picture schedules and visual communication. So many kids on the spectrum feel more in control when they know what is going on. Kids with speech delays or other communication challenges also benefit from having other means of telling us what they need or want.

My first experience with using visuals came before I knew anything about Autism. When Sam was a preschooler, he could never keep his toys picked up. I know that seems like a typical behavior. Most kids are messy. I struggled with teaching him how to pick up after himself though because he had many toys, and lots of containers to put them in. He also got really overwhelmed when all the toys were out. So I decided to use pictures to help him stay organized. I took pictures of his clean, organized room so he would know what a "clean room" looked like. Then I took pictures of each toy bin with the toys that went there, and attached them to each container. Each day when it was time to clean up, I sat in the room with him and helped him pick up one type of toy at a time and put it where it belonged.

It wasn't a fool proof system to be sure, but it did give me a lot of insight into what would help Sam in general. I began using visuals for chores, reward systems, and even meal time.

Liam learned to use a picture schedule in Early Intervention, in the structured play class. It seemed to help him a lot. Since at that point his verbal skills were just starting to develop, I decided to implement our own picture schedule at home. We used it to organize his day a little at first and to help him understand bath time and bedtime. I used Velcro on the corner of a large whiteboard we already had, and laminated pictures of him doing the activities on the schedule. It took us a while to get the hang of it. But now we use it every day to remind him what the day's plans are (like school, therapy, etc.)

We use magnets to keep the bag of pictures and "Finished" envelope handy. We also found though that when it was time to run errands in the car, simply showing him "car ride" was not enough information. He has developed enough where the details matter more. He needs to know exactly where we are going, and he may very well have distinct preferences about them too. So after a lot of research and trial & error, I created a little schedule for the car. I laminated an index card and put Velcro on both sides (4 spaces). I made mini versions of any place we might go in the car, like school, grocery shopping, the park, etc. I keep the card in my purse, and the pictures in the car.

Liam has even graduated to requesting some places, first with the picture, then just by name. I suspect that eventually we won't need the pictures; we will be able to tell him we are going to the store or the gas station, and he will know exactly what we mean. Now if we could only get him to agree with where we are going . . .

- Adrienne

Thinking Errors: How to Jump in the Deep End of Aspergers Emotions

I've been doing a lot of soul searching the past few weeks, and lots of research, and phone calls, and crying, and more phone calls . . .

This school year we attempted to put Sam back in public school, to allow me to find some part time work and contribute to family finances. No such luck, but inevitably better since I am needed at home right now. Sam did so well for about a month, and then started to deteriorate, both emotionally and academically - this is a first. Being a tween involves so much more social pressure to fit in, and Sam just doesn't. He wants to, but it lasts only so long before kids don't want to play by his rules, or always hear his ideas. And kids can be mean, so friends become enemies with little advanced notice.

By Halloween, it was clear we needed to find an alternative, even if temporarily. After Thanksgiving, and a visit to Vancouver to spend time with his grandmother, we registered Sam in a day treatment program. We hoped that the limited stay in a less stressful environment would allow him to learn, or practice, emerging social skills, and work on his emotional development. After 9 weeks, we saw very little progress, mostly sporadic, and little transfer of skills to the home environment.

Every one of his therapists, and even school administration, recommended a change of placement. But rules are rules, and everything has to be documented and supported by data. And there wasn't enough of either as far as the school district was concerned. So back to school he went, so he could fail again and the district could take data on it. What a completely illogical way of treating special-needs students. And how naive I was, even after 6 years of never getting the resources he needed, to agree to this.

After just one month, and many absences, and suicidal meltdowns at home, we pulled him out permanently. But the meltdowns have yet to stop. They get worse with every one, and we are keeping the crisis line number handy, just in case. It should never have come to this. And I keep asking myself why, and how can I help him? Where do I even begin?

I found an article, inspiring this post I might add, that I will be rereading and sharing ad nauseam, because it explains the errors in thinking that I believe are the entire base to all of Sam's meltdowns. I don't know if understanding them will help me help him, but I hope so.

My Aspergers Child: Helping Aspergers Children Eliminate “Thinking Errors"

In brief, there are five thinking patterns discussed in the article: over-generalizing, minimizing/maximizing, emotional reasoning, fortune telling, and all-or-nothing thinking.

• Over-generalizing is when the child uses one event to assume future outcomes. For example, Sam believes that because his brother Liam (4) refuses to hug him, that Liam must not love him.
• Minimizing or maximizing is essentially "making a mountain out of a molehill" and vice versa. For example, Sam frequently believes he has no talent because of the things he can't do, and minimizes his artistic abilities and skill at building elaborate structures in Minecraft. This also happens with blowing mistakes out of proportion and thinking about the worst possible outcome. We hear this a lot too, like when Sam goes out to find neighbors to play with, and the first one isn't home. He then says that the other kids probably won't or can't play either, and he will be bored all day.
• Emotional reasoning is the confusion between feelings and reality. For example, when Sam plays with his brother, Liam hits him sometimes. Sam feels hurt and angry, and assumes Liam is doing it deliberately.
• Fortune telling is making predictions or assumptions with no supporting evidence. Frequently Sam will have a meltdown in the middle or towards the end of the day. If he has been enjoying privileges, he will often say "I guess this means I won't get ___ today" (like to play the iPad, or a trip to the store) when I have made no comments about what he can or can't do in relation to his behavior.
• Finally, All-or-nothing thinking is, well, thinking in terms of always and never, and is related to minimizing and maximizing - this is the extreme version. So when Sam doesn't get to play with a particular friend, he "never gets to do what he wants," Or when he can't have ice cream, he "never gets anything" and we are "the worst parents in the world."

In many cases, we see all five of these combined into the ultimate meltdown, on top of sensory over-exposure, and anxiety, and it results in Sam believing the only way to stop feeling this way is to not be alive. It's very scary. And yet, I still believe there is a solution out there, there is help, we just haven't found it yet. I hope that's not an error in MY thinking ;)

- Adrienne

Pumpkin Muffins

Not surprisingly, I found, while going through my pictures, that I had virtually nothing from October 2011 when I started changing diets, till March of 2012, when I backed off. I must have been too busy! I did find my first batch of gluten and dairy free Pumpkin Muffins, a la Silvana Nardone (check the Books page for info on her cookbook).

Notice they were half gone by the time I took the picture. Still a favorite breakfast treat, when I have time to make them.

- Adrienne

There and Back Again

Making dietary changes for one's self is comparatively easier than changing someone else's diet, or a whole household. When I initially began my research on diet changes affecting Autism, it was inspired by some information my sister shared with me about the effects of yeast and sugars on the brain. I am a skeptic, so I tend to be very thorough in investigating any health claims, especially when considering my kids.

After doing heavy internet research (including peer-reviewed articles; I will post some titles in my Books page), and lots of library books, I decided I had nothing to lose by starting with Liam. Even though his doctor was not supportive, I knew it wouldn't hurt him since his diet was so limited already.

I know, it sounds like taking away ingredients would further limit him, but I started by replacing the foods he ate with gluten free versions, or introducing new snacks. So Teddy Grahams became Annie's Snicker Doodle Bunnies, Kix became EnviroKids Gorilla Munch, etc. It took a few weeks to inventory what needed to go, and introduce a few new snacks. Within two weeks however, we were seeing a change.

Liam wasn't eating more per se, and was still having tantrum issues, but his focus increased, his attention span lengthened, and sitting for a few minutes became 10 minutes or more. Even his teachers at Early Intervention noticed a difference in his participation.

And then there were words.

Beautiful, plentiful, yet repetitive. But I heard him finally say "Mommy" with regularity, and he learned his brother's name, and Grandma, and so many more. Most of his speech till now was more sounds with little combining, and mostly random vocal stimming. None of it was functional, and he did not point or gesture. And yet, here he was, as if he had known how to all along.

I was so surprised, and so was Daddy. Daddy had been gone for several weeks, out of town for work. We decided to make the 4 hour trip to spend a night with him, and he couldn't believe the difference. In hindsight, it could have also been because he hadn't seen his son for weeks, but I think it was both. We did notice increased trouble sleeping, though, and more harmful tantrums. So I decided dairy was the next victim.

And out it went. This was more difficult, as some of the gluten-free favorites had to be replaced yet again. And most of Liam's calories were coming from the dairy-based Pediasure, so we had to look for other ways to increase calories (I looked high and low for protein powder, and only found an expensive rice based one to try for a while).

Lo and behold, no more head banging, less screaming, and less night wakings. By Thanksgiving, we thought we were in the home stretch. It was like opening a door that had been nailed shut for almost 3 years. I was so excited, and at that point began changing some foods the whole family ate.

December unfortunately saw a return of some of the tantrums and head banging. I had read in several books that children with dairy sensitivities often reacted similarly to soy once dairy was taken away. I was emailing a TACA mentor at the time, and asked her thoughts on this. She too believed this was a strong possibility. After trying to eliminate any other possibilities, I began removing soy as much as possible. And here again, tantrums and self-harm began to disappear.

Now, I have read dozens of snippets and articles on both sides of the diet intervention debate. There is still mainly anecdotal evidence for its effectiveness, as for so many other treatments parents try. I mean, we desperately want our children to be happy and functional. Who wouldn't try just about anything? Here are my two cents, after using diet briefly (6 months). At least for my children, dietary intervention has worked just as other therapies: the kids thrive on the changes, and make leaps and bounds in development, and then plateau. This is when we stopped, conveniently the same time as I was about to lose my mind over the extra time, effort, and money. And I call it successful because we saw no loss of progress. Just as with Occupational and Speech Therapy, Liam does well, then needs a break.

Now to just get the motivation to try another round :)

- Adrienne

Ordered Chaos

I have been feeling over the past few months that I've so badly neglected this blog and all my hopes and dreams for it that maybe I should abandon the project altogether. However, I realize that the point was to document my adventures in raising two vastly different yet somehow similar children with Autism and sensory issues and a host of other things. Life with them, on top of other stressors, is by it's very nature, extremely complex, and defies any efforts I make to organize it or schedule it or make sense of it. And yet I try any way, because that is MY very nature - to try to order and organize every bit of my life (and everyone else's, to their chagrin). That's my bit of neurosis.

This is why my blog gets neglected. Because some months (or days, weeks, etc.) are more chaotic, while others are a bit more inclined to order. I suppose the higher chaos times I end up with way more to write about when I get the chance though. Far more to think about, that's for sure. It'll end well, assuming an end.

To sum up the chaos that will eventually make it into individual posts:
- our foray into the world of diet restrictions (i.e. gluten-free, dairy-free, and then soy-free) for Liam, then Sam, then me, in various forms
- new GFCF experiences with cooking and baking (woo-hoo!!!)
- occupational therapy and sensory integration
- speech therapy
- behavioral therapy
- feeding therapy
- structured play
- homeschooling, structured play at home
- an end to early intervention, changing insurance, and revamping school/work for everyone
- lots of research (I already added a ton of books and reviews to the books page and websites)
- AND new friends and resources
- (not to mention regular things like housework, fall/winter holidays, family, the Superbowl, etc.)

I know, it's a lot, but I meant it when I said chaos. No order, not even a little. No wonder I was too busy to post anything :)

- Adrienne

Between a Rock and a Hard Place

I have spent the last few weeks entrenched in my newest research project (research is kind of a hobby of mine) – to find more ways to help my kids be successful, not overlooking anything I might have been reluctant about. This was inspired by conversations with one of my sisters and information she shared with me, for my own perusal, nothing more. My sister is a vegetarian, and has made many diet and lifestyle changes for health reasons. She recently began cutting out foods that contain sugar, or ingredients that can become sugars or yeast in the gut. I had never heard of such a diet, but I have heard of other dietary interventions for a variety of issues, some that she and I share. She also wanted me to read the research behind the diet, as it was shown to help with Autism.

After looking through some of the links and articles, it occurred to me that diet and nutrition might be a puzzle piece I was missing, considering that Liam is not growing well, eating hardly anything, and sleeping very poorly. I’m well aware of how diet affects physical and mental functioning, if only from personal experience. So I cross-linked to other sites, searched out books at the library, and hunkered down (in the precious little time I have to myself each day) to gather information.

I am a skeptic at heart. I need to read or see the science behind things. I usually scoff at anything that has no proof, or at least nothing tangible to back it up. So this is the purpose of my research. What I have found however, is way more than I expected, and almost shocking that I haven’t heard of much of it before. There’s been tons of research done in the last 15 years that supports dietary interventions and nutrition assessments for children with Autism Spectrum Disorders. It makes sense too, that if diet and nutrition are so important for normal growth and physical and mental functioning, this should be a crucial piece for treating children with ASDs. These children (mine for example, but there are hundreds of thousands more) regularly have problems with cognitive functions and communication, GI issues, feeding difficulties, sensory processing problems, and fine and gross motor issues. So why isn’t this addressed by our pediatricians?

Well, Judy Converse, MPH, RD, LD explains it quite well in her book “Special-Needs Kids Eat Right.” (2009, Penguin Group, New York) It’s a combination of history, holes, and controversy.

• History: Unfortunately, some remnants remain of the now defunct theory that Autism is caused by cold, unloving mothers. It was a terrible idea to begin with, but we are still having trouble ridding the world of this.
• Holes: Most doctors don’t receive any training in nutrition during their education. Why? Because of specialization. The medical field now has specialists for every system in the body, but all separately. There is no whole body practice. And, pharmaceutical companies are great marketers, so doctors are encouraged to push prescriptions, and treat symptoms, instead of getting to the root of the problem. I have this complaint all the time, that doctors don’t treat patients, they treat symptoms.
• Controversy: Finally, there’s the sacred cow of vaccines. Most don’t know the whole story, or the science that got misconstrued, so the safety of vaccines is still in hot debate. But the truth is, vaccines are safe (in my opinion), except for a subset of children who may be predisposed to react to a clustered viral exposure. I don’t feel my children were adversely affected by vaccines, but there are children out there who were.

So all this means that traditional doctors are reluctant to venture into treatments that aren’t mainstream, especially in fields of knowledge they are unfamiliar with, like nutrition (that is usually the domain of licensed dietitians and nutritionists).

On Tuesday, at the boys’ physicals, I too found this out the hard way. But I was prepared with the above knowledge, and knew which questions to ask. The pediatrician, as expected, was reluctant to offer any information about dietary interventions or the like. But she recognized my concerns about Liam’s poor growth and nutrition, and referred me to a nutrition clinic that also has a GI department. AND it’s covered by our insurance!

I do feel kind of stuck though, between the immovable rock of traditional medicine, and the hard place of going to the other extreme, territory I’m uncomfortable with unless I can read the science. It’s a tough place to be when I just want my kids to be healthy, and be the best they can be, whatever that turns out to be. This is a place many parents of ASD kids before me have been, and more after will be. But I hope it will be easier for them as time goes on.

Here’s hoping for progress and open minds.

- Adrienne