In So Many Words

I don’t know about you, but I spent the first several days after hearing the diagnosis of autism frantically reading everything I could get my hands on, trying to figure out what I should be doing to help my son. I swung daily from feeling that there must be one perfect answer to the question to feeling like I should be hitting every area at once so as not to lose any more precious time.

I was blown away by the fact that the Birth-3 team thought 45 minutes of speech therapy and 45 minutes of occupational therapy a week was plenty. And even though the preschool program offered 12 hours a week in the classroom along with the therapy sessions, I still felt an intense pressure to do more.

So we did. We have tried a lot of different therapies, with a variety of outcomes. We have done music therapy, art therapy, occupational therapy, a listening program, speech therapy, sensory integration therapy, behavioral therapy, Floortime, psychotherapy, a special diet, supplements, and medication, to name a few. Some were effective and have stuck with us, while others likely did more to make me feel like I was doing something than they actually helped Michael.

I don’t pretend to have all (or even most) of the answers, especially since at times I still battle the same insecurities and fears that I always have, but here’s a few things I have learned along the way:

• Parenting is a marathon, not a sprint. Pace yourself, and don’t let every little issue become your whole life. The conversations about nursing versus bottle feeding that were so all-consuming when your child was an infant aren’t even on the radar when you are talking to the second grade teacher about spelling or math.
• Quantity is important, but quality is even more so. As much as some people would like you to believe you must do 40 hours of ABA a week, or 8 Floortime sessions a day, it is critical to give your child yourself, present with them, engaging with them however you can.
• Along those lines, nothing takes the place of getting on the floor and playing with your kid. For some people, this is natural, but for me it was easy to retreat to the computer and my books and focus on researching and learning to find the “right” answers. If I could go back, I would spend half that time just hanging out with Michael instead and really paying attention to what makes him light up with interest and curiosity.
• You have to pick your battles; that is, figure out what your top goals are and prioritize any therapies that addresses those issues. What skill or activity would make things better for your child and for your family? What would make them more functional and independent in their communication or daily life? Once you know what you want and what your child wants, you can make decisions about where therapy may fit in with those goals.

When it comes down to it, we are all imperfect people, raising imperfect children. We want to prepare them for life as best we can, to pass on our values and ideals, to let them know they are loved and to celebrate their uniqueness. We cry for them when things are difficult and rejoice with them when victories are won. We do the best we can at any given moment, and so do our kids, and that’s enough for me.

Note: This post was written for the Best of the Best, Edition 9: Therapy and Special Needs Kids.

For a compilation of some of the best posts on social and play skills related to children with hidden disabilities, visit the S-O-S Best of the Best, Edition 2: Social & Play Skills.

There are some amazing bloggers represented in this list, both parents and professionals, and I am honored to be included among them with my post about the playgroup Michael attends.

You can also find information on the next two topics and details on how to submit a post for consideration in an upcoming Best of the Best at Help! S-O-S for Parents blog.

I first became aware of Liquid Zeolite in the fall of 2009 through a retired local pediatrician who had used it with several people and seen a good response in regards to health problems related to toxicity. He suggested that it may be helpful for some of the behavioral symptoms of children with autism who had higher toxic levels of substances such as mercury, lead, cadmium and arsenic, and several local families, including us, agreed to give it a try.

I was never really sure whether it made a big difference for Michael, although I can say that it was the easiest supplement we have ever used. It is a tasteless, odorless, clear liquid, and the dosage is only a few drops which can be placed directly on the tongue.

At the time, I did note improvements in a few areas (less spinning and perseveration and better attention and focus) over the first few weeks but cannot say whether these would be accounted for by other factors. However, with the exception of his dramatic positive response to the removal of dairy from his diet and the near-miraculous effect melatonin has had on our entire household, Michael has had milder gains from most of the other nutritional treatments we have done with him, so this is not unusual for him.

Over the last couple of years, I have found that my own health problems have worsened. What was thought to be reflux esophagitis (although it didn’t really fit the standard profile for it) was found last spring to be eosinophilic esophagitis. This resulted in the additional diagnosis of several confirmed food allergies, along with milder reactions to a few other foods and some seasonal allergic symptoms. I also have issues with my weight and with depression and anxiety, so there are a number of factors working together here.

I have thought about trying the supplement for myself but hadn’t followed through on the idea until recently when I spoke with the folks at True Zeolite. They shared with me about the health benefits of zeolite:

Waiora liquid zeolite has a lot of benefits because of its ability to bind and remove heavy metals and toxins. Some of the zeolite benefits include balancing your PH level, helping with diabetes, acid reflex and digestion, headaches, allergies, preventing viruses, and supporting a healthy immune system. Waiora liquid zeolite is also 100% safe to use and natural for long-term use.

So, I am going to be giving this a trial run on myself to see if it helps in any way. I will be keeping track of my progress and will let you know how it goes and what results I see from it. And, if the last several years are any indication, you don’t have to worry about my making any other lifestyle changes in the next month to skew the results!

In the meantime, you can find a lot more information about what Liquid Zeolite is and how it works on the True Zeolite website.

Disclaimer: I was provided with a one-month supply of Liquid Zeolite at the suggested detox dosage. True Zeolite has also purchased a quarterly ad space on this blog.

This is a day late because I didn’t get online until late yesterday and ran out of time, but I have a number of links I wanted to pass on.

Floortime

What is Floortime? – K over at Floortime Lite Mama put together a great post with the basic concepts of Floortime. In it, she talks about the concepts it is based on as well as how it looks in practice.

If you’re interested in more information, she also wrote about the difference between classic Floortime and using Floortime as a lifestyle in Portrait of a Floortime Evening and shared her heart about being mom vs. therapist over at Hopeful Parents.

Life Lessons

Autism: The Teacher at Puzzled – This is a thoughtful essay about the lessons we can learn from raising an autistic child. As she puts it, just like a non-elective class in college, we didn’t choose this path but can choose to learn from it.

Sensory Processing Disorder

I have been thinking a lot more about this topic recently, especially as I am reading a couple of books about SPD to review for this blog. The Gift Blog just published An Interview with Dr. Lucy Jane Miller, one of the foremost researchers in this area at the current time and one of the people working very hard to get SPD accepted into the Diagnostic and Statistical Manual (DSM).

On Advocacy

Advocacy Power – More Parents Leading the Way – If you are looking for some guidance on advocating for your child, this is a great place to start.

For those of us already in the trenches, An Open Letter to Special Needs Professionals really speaks for how I am feeling much of the time when dealing with many doctors, educators and other people in Michael’s life.

On a more practical note, this article on 5 Tips to Help Autistic Students with Transitions is concise and clearly written for teachers and other professionals who may not have a solid understanding of autism. In fact, I already passed it on to Michael’s autism consultant to share with the team.

I hope you find some encouragement and new ideas in one or more of these posts. Please let me know if there’s a particular topic you want to hear more about and I will do my best to find information on it.

I have been collecting a bunch of bookmarked pages and emails with all sorts of information that I thought might be useful but didn’t have time to go through right then. I am finally getting to this project and wanted to share with you the fruits of my labors.

No-Food Birthday Cakes at American Partnership for Eosinophillic Disorders
I was doing some reading on eosinophillic esophagitis (for me, not my son), and found this great article at about how to make birthday cakes fun for a kiddo who can’t or won’t eat cake.

There are some very clever ideas here, and I’m sure something will jump start your creativity for the next celebration. Luckily, I have a few months to think about this one, but I definitely want to do it for Michael’s next birthday party.

What to Ask of An Occupational Therapist at The Thinking Person’s Guide to Autism
Wow! This guest post by Dr. Boucher from TherExtras blew me away – how I wish I had something like this when I was getting started!

No matter, I’m sure I will use it many times in the future and adapt it to any professional I am seeing for my son. And I’m also thankful to have been introduced to another great blog with tons of helpful information.

Autism Risk & Safety Management
This is the site of Dennis Debbaudt, a leading advocate for autism training for first responders. With the increase in encounters between law enforcement and people with autism, this is a crucial area of need, and this site has a lot of information about keeping your child safe and reaching out to the community.

I know several members of our Autism Society chapter take gift baskets to the police stations locally on their Memorial Day (where they remember fallen officers) and also ask for the opportunity to speak with them about autism. It has always been very well received by the officers.

National Parks FREE Access Pass
Did you know that a person with a permanent disability can get a free lifetime pass that is good at federal recreation sites? It is available to people who are US citizens or permanent residents and would also cover the person’s caregivers. The site has full details of the eligibility requirements and how it works, although you do have to obtain it in person so they can verify residency and disability documents.

Now that Michael is interested in traveling to different places, I am definitely going to get one of these. It will be a big help to the vacation budget!

We got our results from the visit to the DAN! doc who we started seeing through Pfeiffer Treatment Center (I wrote about our first visit earlier). They were very interesting and supported the fact that there are a couple of areas out of balance.

THE RESULTS
First of all, his kryptopyrroles were quite high and his zinc levels were below the normal range, indicating the presence of pyroluria as suspected. His zinc/copper ratio and the amount of unbound copper were both somewhat high, and the amount of copper-binding protein was lower than normal.

A couple of things I wasn’t expecting to hear were that his vitamin D level is deficient and that his histamine level is elevated. He also had low ferritin, indicating that his iron stores are low, which isn’t so surprising given his diet.

The organic acids test showed insignificant amounts of yeast and normal bacteria, although he did have a somewhat high arabinose level. And finally, the X-ray showed mild to moderate fecal retention.

THE PLAN
So, we have started the compounded supplements along with a variety of other items that were recommended by the doctor. We haven’t gotten to the full plan yet, but most everything has been started. Here’s a breakdown of what we are giving:

With breakfast

• Compounded supplement including Vitamin C, B6, P5P, Biotin, Niacinamide, Chromium Polynicotinate, Magnesium Glycinate, Zinc Citrate and Vitamn D
• Inositol and Taurine (for calming and aggression)
• Zeolite (which we have been using for several months for detox)
• L-Carnitine (for motility)
• Probiotics

With supper

• Compounded supplement including Vitamin C, Vitamin E, Biotin, Niacinamide, Chromium Polynicotinate, Magnesium Glycinate, Zinc Picolinate, Iron Gluconate and Vitamn D
• Inositol and Taurine
• Zeolite
• L-Carnitine
• Probiotics

At bedtime:

• Melatonin

We were using GABA for calming but the nurse had us discontinue it since we were seeing any changes. That is when we introduced the inositol and taurine. I can’t say that I have seen a difference, but they are both safe and helpful in other ways, so I’m going to give them some more time.

STILL TO BE ADDED
We still need to add cod liver oil to the regimen. My husband has actually been taking the CLO that I had. When I ordered more, I tried a different brand and he remarked on how much better it tasted. When I looked at the bottle, I realized that it was just fish oil with the essential fatty acids and no vitamin A or D, so that’s probably why it tastes so good! I need to order the regular CLO and then start giving that to Michael.

I also have a calcium/magnesium liquid that he is supposed to take, along with a third dose of L-carnitine, at bedtime, but he hates it due to the creamy texture. We are also supposed to do a bowel massage each night to help with motility.

The other thing that I did faithfully at the beginning and have slacked off on is applying Evening Primrose Oil to his skin at bedtime. This is an omega 6 which has been shown to be helpful in treating pyroluria, along with the high doses of B6 and zinc.

What a week! I received my son’s IEP on Tuesday (we met the previous Thursday) and unfortunately there are still some outstanding questions, at least on my end, that need to be resolved. So I had to send back the NOREP (written notice form) requesting another meeting.

Here are a few of the notable posts I found this week:

Decision Points at TherExtras – a fascinating and thought-provoking play by play of a therapy session from the therapist’s point of view

It’s Summer Camp Time Again…HELP! at Spirit of Autism – I can’t find a permalink to the post, but, if you scroll down, it is from April 17th and has a great list of questions to ask when evaluating a summer camp for your child with special needs

Turns out Autism IS associated with GI disorders at Adventures in Autism – results from an Autism Treatment Network study that were recently published

Happy Mother’s Day to all of you special moms out there!

I’ve been too busy with a psychiatric evaluation and an annual IEP meeting to keep up with email, let alone blog, but there have still been a number of great articles that caught my eye this week.

My Crystal Ball and My Checkmark Chart at Welcome to Normal – My last token economy system for home had kind of fallen by the wayside with the recent difficulties in school, especially since I wasn’t letting him play the Wii or computer if he was aggressive that day. It kind of makes it hard to earn privileges at home when you aren’t allowed to redeem them.

But after reading this and seeing how Caitlin is converting the checkmarks to money, I thought that might work for Michael at this point in time. I am making them equal to a dime, which is the same amount he gets at school (although theirs go towards school dollars and not real ones, of course!). Michael has been highly motivated by it for the last few days, so hopefully that will continue.

Interview With Taylor Morris — An Exceptional Teenage Girl with Aspergers at Hartley’s Life with 3 Boys – A fascinating interview with a young lady who shares about her experiences with sensory processing disorder and Aspergers.

In Honor of Dr. Stanley Greenspan at 5 Minutes for Special Needs – Dr. Greenspan, who among many other things started the D.I.R./Floortime therapy, died on April 27th following a stroke. He will be greatly missed.

Eating for Autism at autism community – This is a review of a book by Elizabeth Strickland regarding the GFCF Diet and having a healthier diet overall. I’m wondering if any of you have read or used this book at all and whether you like it. One of the things I need to focus on with Michael is improving the quality of his diet, which has been difficult due to his sensory issues and the number of different foods and textures that he avoids.

Well, that’s is for this week. I’m clearing out the GReader and starting fresh in the morning!

I have been reading so many great posts by bloggers lately, and whenever I see something that really speaks to me in some way, I feel an urge to share it. Rather than flood Twitter or Facebook with links that may or may not be seen by anyone, I decided to list a few of them here.

So here are some things that caught my eye in the past week:

On Advocacy – a subject that is near and dear to my heart:
What Is Advocacy? An Inside Scoop From Pathfinders For Autism from The Gift: A Blog for Caregivers of Sensational Children

An Amazing Moment When a Kid is Just a Kid
The Power of You and I from Welcome to Normal, Population 0

Insights Regarding the Division Between Biomed Moms and Neurodiversity
Desperate, huh? and Bridging the Gulf from Life as the mother of 4

Practical Tips
Simple Accommodations to Help Your Autistic Employee Excel from Spectrum Siblings

Autism Treatment – How to Use Supplements to Treat Autism, Part 1 and Part 2 from Dr. Kurt Woeller’s Autism Recovery Treatment Blog

And on a separate, somewhat superficial note, did you know that you can now put a Facebook “Like” button on your web site? It allows you to see how your Facebook friends are interacting with sites around the web. I put one on Another Piece of the Puzzle just for kicks, so feel free to pop over and “like” me (and let me know if you add one to your site)!

I last posted about my son’s biomedical treatment last October, when I was fed up with the DAN! doctor we were trying to see and decided to cancel our follow-up appointment (that had been rescheduled more than once due to testing delays).

Well, since then, we were able to go to the outreach clinic held by Pfeiffer Treatment Center, which is a non-profit center specializing in treating biochemical imbalances. They are located in Warrenville, IL, but hold an outreach clinic twice a year in Annapolis, MD.

I took Michael down there on March 9th, the day after his first chair-throwing incident and the day before his 8th birthday, and I was very impressed with the whole operation. They basically take over a floor of a hotel and you see the nurse and the doctor, who is a DAN! doctor by the way, and also give a urine sample there. The blood draw was done at a LabCorp literally two blocks away.

The doctor told us that he suspected pyroluria based on Michael’s symptoms, but that we would know more once the testing was done. He gave me a starter supplement and a short list of other supplements to use until we heard back from them. He also had us do an OAT (organic acid test) to check for yeast or bacteria and get a X-ray to check for fecal retention.

Here are the supplements we started/continued after the first visit:

• Pfeiffer starter supplement (includes Vitamin C, Vitamin E, B6, Magnesium and Zinc)
• Evening Primrose Oil (we did transdermal, this oil is an Omega 6 and recommended with pyroluria)
• GABA for calming (we didn’t really see any effect from this one)
• Continue the Zeolite
• Continue probiotics once the OAT sample collected
• Continue melatonin for going to sleep
• We added L-Carnitine after the Xray showed mild to moderate fecal retention as it is supposed to help with motility

I started very slowly with the supplements, just juice at first and then mixing in a little bit at a time until I got to the dosage. He has been surprisingly compliant, for which I am very thankful. Hopefully that will continue as we start his customized plan. I’ll post more about his results later.