This summer has been an interesting one, sort of like a seesaw with Michael on one end and me on the other. (You have to suspend your disbelief to make it actually work despite our size difference!)
Let me explain what I mean:
Michael on the Upswing
For the first five weeks of the summer, Michael went to a babysitter’s home. Bonnie is a special education teacher who wanted to do some childcare this summer and responded to my ad on Care.com (a wonderful site, by the way). She was drawn to the picture I posted of him and felt that he was the one she was supposed to take care of this summer.
It was truly a match made in heaven. Bonnie was willing not only to deal graciously with Michael’s meltdown and quirks, but also to work on specific skills such as playing games appropriately with others to have fun and to show good sportsmanship. This is a big struggle for him, and between Bonnie, the TSS, and Bonnie’s two children, who are 12 and 13, they made some good progress.
Even the psychologist who runs his playgroup remarked that he is more focused when playing games and is ready to take his turn, as well as accepting others’ choices about what to play more agreeably. He still has trouble with losing, but is learning to better moderate his words and behaviors.
Although I was completely thrilled with the arrangements and would do it again in a heartbeat, I have to admit there were some downsides to those weeks. I was driving back and forth across the river twice a day, often in very heavy traffic, and filling up my gas tank about every 5 days in addition to paying her. I had no down time, as I was picking him up directly after work and often driving then to a therapy appointment or other activity.
And Now It’s My Turn
Again, this second part of the summer isn’t all bad for Michael; it’s just better for me.
Right now, Michael is going to STAP, which stands for Summer Therapeutic Activities Program and is funded through Medical Assistance. He has been to this particular one before and is thrilled to finally be in the big kids’ room, but he doesn’t like it as much as going to Bonnie’s house. There are a lot more demands on him for appropriate social interaction in a more structured setting with a lot less flexibility and choice in terms of what he wants to do.
For me, however, it’s great! The van picks him up at the house in the morning and brings him home in the afternoon. Since the program is 6 hours, the travel time brings it to 7 hours or more out of the house each day. I go to work for four hours and then can run errands, come home and work on things around the house or just take a rest if I need one. 
We are continuing with OT but taking a break from playgroup until STAP is over, so we don’t even have as many places to go. And I think this summer has worked out well because he did get a relatively unstructured break but is now getting back into a routine that is closer to what happens at school. And even though they focus on social skills and not academics, they do have them doing some form of writing or art every day.
Now if I can just get him to work on that darn packet the second grade teachers sent home to be finished by the first day of school!
Oh, yeah, and I still don’t know what I’m going to do with him for the week between the end of STAP and the beginning of school. (Any local moms interested/available for 25 hours the last week of August? I don’t even care if I have to drive across the river, honestly!!)
I am very excited to be going to the National Autism Conference in State College, PA in a couple of weeks. I have gone three times in the past, although I skipped last year because we took a big family trip out to the Midwest to see my family as well as some Grant Wood sites.
This year Bob is taking some much needed vacation time to give his mind a break from work and putter around at home or go to the music studio while Michael is at day camp and then will be doing fun stuff with him when he gets home in the afternoon.
I, meanwhile, will be enjoying the peace and quiet of the guest room at my brother-in-law’s house and spending most of my time learning about a variety of autism-related topics. Can you tell I am looking forward to it? 
One of the great things about this conference is that it brings together professionals from many different disciplines, as well as parents and other family members. The keynote speakers are often adults who have autism sharing their stories and insights. Plus, it’s only $25 for the entire week for PA parents, and they provide lunch as well as great snacks and even a continental breakfast spread in the morning.
The first year we went as a family, and Michael was able to take part in their Children’s Institute. They now give preference to children who have not been there before, so we were unable to get him in again, and I didn’t even try this year.
I’ll be sure to post what I learn, and if anyone reading this is going to be in attendance, please let me know! I would love to connect with you there.
Here are the sessions I’m signed up for. Let me know which ones you are most interested in hearing about:
- Opening Keynote with Brian Abrams
- NIH Autism Research Update (in which they tell us yet again how crazy we are for thinking autism has anything to do with environmental issues)
- Implementation Science and Practice (this is a research symposium)
- Teaching Flexibility: The Development of an Intervention for Children with ASD
- Using the National Standards Report to Inform Training Agendas
- Family Struggles: Living with ASDs
- Collaboration: The Key to Successful IEP Teams
- Practical Hints and Tips for Success at Home, School and the Community (I have heard these speakers before and really liked them.)
- Crisis Management for Families
- Innovative Use of Technology to Support Students with Autism (this is a promising practices session)
- Intensive Clinical Models Designed to Modify Behavior in the Regular and Special Educational Settings (another promising practices session)
- Closing Keynote with Deborah Lipsky
P.S. I just remembered that this year they are going to be posting the handouts online instead of handing out copies at the conference. They aren’t all up yet, but you can check it out if you’re interested in seeing any of them. This change is ostensibly to save paper, although I think the main reason is the handout trolls who would sneak into the sessions they were interested in but not attending to snatch the handouts, making it so there weren’t enough for the people who actually had signed up for the session. (Now there’s an interesting study in group behavior!)
Usually, when you hear a horror story regarding a child with autism and the dentist, it relates to their sensory issues and other difficulties that make it a traumatic experience for everyone involved. In our case, the pain and suffering centers on my having to deal with the insurance company.
Let me preface this by saying that we choose to have an HMO for our dental insurance rather than the PPO option. Overall, it is the better choice for our family, but it can be a real pain when trying to obtain appropriate care for our son.
Let me also say that I realize this is not really a horror story because it eventually gets resolved and that I know many people go through far worse in their dealings with insurance. I just think I will feel better once I get it off my chest, so to speak.
Our Dental Saga
February 3rd – Take Michael to new primary dentist, watch hygienist attempt to clean his teeth and dentist attempt to examine them. Once his teeth have been half cleaned and one cavity has been identified, obtain the referral to the pediatric dentist.
February 17th – Take Michael to pediatric dentist, who has been seeing him for several years and cleans his teeth himself with a regular toothbrush. Listen as dentist tells me he actually has two cavities and that he would like to fill and seal them, using nitrous oxide to help him be calm during the procedure.
February 25th – Receive predetermination notice from insurance company that everything except the anesthesia would be covered. Notice states that it is valid through 2/24/11.
March 10th – Michael turns 8 years old. (This become important later.)
April 5th – Take Michael to have the work done. The dentist is able to complete everything with the only complaints from Michael being that it took to long to “get his teeth painted.”
April 8th – Receive denial from insurance company stating that claim was sent in without referral form. (This happens every time, and every time the dentist insists they sent the form, so I don’t know who is telling the truth.)
June 10th – Receive another denial from insurance company stating that claim was sent in a second time without the referral form.
June 14th – Speak to the insurance company and am told that they can process the claim using the referral form that is attached to the predetermination of benefits for this service.
June 24th – Receive letter from insurance company stating that because Michael was 8 years old when the services were provided, our coverage no longer allows him to go to a pediatric dentist unless he has special needs that are documented by from his physician.
June 28th – Call the insurance company to find out exactly what the doctor needs to send and where it should be sent and am told by the customer service rep that no matter what I send in, nothing will be covered because our policy does not allow children 8 years old to go to a pediatric dentist, even with special needs.
After being put on hold multiple times and condescended to for not “understanding” his explanation of our benefits, am told that a supervisor is not available and he can request a callback for the next day. Am also told that the supervisors will probably ask him to handle it and won’t actually call back themselves. Tell him not to bother as I will call first thing in the morning.
June 29th – Call the insurance company again and ask to be put through to a supervisor immediately. Speak to a very nice and professional woman who explains exactly what I need from the pediatrician and where it should be sent. (She also expresses her shock at the way the call was handled the previous evening and promises to pull the call so she can review it with the representative.)
July 9th – Receive letter from insurance company that they are still working on the claim. (Assume this means they got the note from the doctor.)
July 15th – Receive EOB showing that all dental work has been paid for with the exception of the anesthesia. WOO HOO! Call to confirm that it is okay to schedule his next cleaning and am told I do not need another letter from the doctor.
Today – Call the primary dentist to get a referral to the pediatric dentist and pray that I’m not just starting the cycle all over again. Ugh!!
I recently had the opportunity to get one of the cool sensory products from National Autism Resource to review for my blog. After looking at the items, I immediately knew what I had to choose – one of the Squishy Dinos.
Why that one, you ask? Well, we have a new kiddo coming to the Friendship Station (special needs classroom) at our church who is obsessed with dinosaurs, so all of the teachers in the room have been picking up toys and puzzles from dollar stores, yard sales or wherever we can find them to help him be engaged and occupied while he is there. Plus this one had the extra bonus of providing sensory input, so I was sure it would be a hit.
And it was! The boys have integrated him happily into the battles and rescues and other games they love to play, and they don’t realize we are sneaking in some extra sensory input along with it. Even the parents can’t resist picking him up for a little squeeze therapy.
The one we got is the stegosaurus, which you can’t see in the picture unless you look very closely in the upper right corner of the box. He has a rubbery body which you can pull and squeeze, as well as a squishy middle that is very satisfying to play with when you’re bored or a bit stressed out. (Can you tell I have played with it almost as much as Michael has?)
National Autism Resource is one of the neatest sites I’ve seen of this nature, as it combines helpful articles for both parents and teachers with recommendations of books, toys and other items that correspond to the topic of each article. As it says in their mission statement…
National Autism Resources was born from a dream to make the world a little easier for people living on the spectrum and their family members. We strive to empower our community by providing excellent information, helpful links, and affordable books, games, toys and therapy products for people on the spectrum.
I think the dinosaur will be staying at church, but I love the idea of having sensory toys that look like regular toys for Michael to use at school or other places where he needs a little stress relief but doesn’t want to look different from the other kids.
When you have a moment, I would encourage you to check out this site. They have a ton of sensory friendly items as well as other products designed to help with social skills, emotions, learning and educational supports.
Disclaimer: I received one of the dinosaurs from the Squishy Dino set to review. No other compensation was given, and my opinions are my own.
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:
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!
