Yes, I'm a "Bio-Med Mom"

Today it occured to me that I am in a new club...I'm one of the "bio-med mommies". What does that mean? Well, it's kind of hard to explain in one sentence but I'll try...I took Matthew to a DAN (Defeat Autism Now) doctor (who is a developmental pediatrican) and she ordered lots of tests (blood, urine, stool, hair) to look for underlying health issues, and based on the results of those tests prescribed meds (antifungals for yeast), vitamin/mineral supplements, and suggested the GFCF diet. Some people do not agree with this protocol and think we are needlessly "subjecting" our children to tests and treatments. That seems like a harsh judgment to me. The only tests that are painful for Matthew are the blood draws and we consolidate these to minimize stress. And the treatments are working...I have seen marked improvement since November.

Now, let me take a minute to discuss the controversial DAN docs. There are only about 600 of these physicians in the U.S. and their practices are considered alternative medicine b/c they do treatments that a typical MD does not. And yes, some of them are "quacks" and take advantage of parents desperate to help their children, but I have done my research and have confidence in ours and know of several others that are well-respected.

So, WHY am I a bio-med mom? Beacuse I am willing to try anything (as long as it is not dangerous) to help Matthew...to alleviate his symptoms and give him a better quality of life. There are some bio-med treatments like IV chelation and HBOT that sound scary to me and we will probably not do those. But I can't sit back and NOT try "alternative" treatments (like the diet and supps) b/c I feel that I owe that to Matthew. At the same time we are doing "traditional" therapies such as ABA - both at home and school.

What You Can Do Right Now...

I just finished reading What You Can Do Right Now to Help Your Child with Autism by Jonathan Levy. I agreed with most of what he advised in the book, and while at times it seemed like a big advertisement for the Son-Rise Program, the true stories were inspirational. If I had unlimited funds I would take Matthew to the Autism Treatment Center of America in MA.

Here are the 10 techniques Mr. Levy suggests parents do right now to work with the child and draw them back into our interactive world:

"Don't React: How you respond to your child's behaviors can make all the difference. Learn why most people are ineffective in discouraging their child's problem behaviors and how you can do it differently.

Make Eye Contact a Priority: Understand why eye contact is vital to your child's development and easy steps you can take to help your child to look more.

Join with the Stims: A different and powerful approach to your child's self stimulating and repetitious behaviors.

Respond Differently to Crying: Most of us give children great reasons to cry and act unhappy. Learn to teach your child a more effective way to communicate with you and the rest of the world.

Give Your Child as much Control as Possible: Most children with autism are told "No" much of the time by their parents, teachers, and family members. Make interacting with people more attractive to your child by allowing him to do more of what he wants and moving against him less.

Focus on Your Attitude: A hidden factor in your child's development is how you feel as you work with him. Learn why this is the case and how to feel better, more of the time.

Work One-On-One in a Non-Distracting Room: Why school isn't the best place for your child to develop and grow. Understand the three main factors in a successful educational environment.

Be Dynamic with Your Child: Enthusiasm matters to your child's growth. Learn the three tools you can use to demonstrate energy, excitement, and enthusiasm.

Get More Language: There are three categories of language ability, which does your child fit into? Master techniques that will enable your child to improve her speech, whatever her current level.

Make Sure Food Isn't Part of the Problem: An explanation of dairy and wheat intolerances, and why sugar isn't helping your child. Also, how to introduce new foods so he actually eats them." (source: Amazon.com)

Autism Statistics

I've been meaning to do a post on statistics for a while now, but today I saw a video clip that motivated me. The following info is to promote awareness, and if you ever get the chance, please push for legislation that requires insurance companies to cover the costs of therapy.

* Autism (considered rare before the 1990s) now affects 1 in 150 children.
* Boys are 4 times more likely to be diagnosed than girls.
* 67 children will be diagnosed today (a new case nearly every 20 minutes).
* More children will be diagnosed with autism this year than AIDS, Diabetes, and Cancer combined.

There is no "cure" for autism, but with early intervention and therapy our children can lead fuller lives. However, most insurance policies will not cover the costs. We are fortunate that Tricare (military health insurance) assists us with up to $2400 per month for ABA therapy (that's about 4 hours per week) and that our public school system offers a PAC (preschool autism class) program. Many states have programs that assist with costs, but children are placed on LONG waiting lists. We were told "at least a one year wait" for ST at the local children's hospital (so we went elsewhere) and have been on a waiting list for private OT since August. The therapists cannot keep up with the rising demand!

Pick A Potty!

The time has come to begin potty training and we are trying to figure out which one to use. As you can see, we have 4 options (I inherited these from friends/found at consignment sales). From left to right: contestant #1 is the widest but the handles are low; #2 seems fine; #3 lights up, plays music, and flushes; and #4 is the insert option on the real potty (with a step stool...but Matthew has prob turning around on to sit down). So what do you think...what has worked for your little boy?

Artwork Extravaganza

Matthew came home from preschool with 4 new masterpieces...hope you enjoy the pics! (We think the 2nd one is a rabbit.)

Fuzzy Bunny

I found this masterpiece in Matthew's back-pack. It must have been today's craft at preschool. As you can see, he glued the cotton balls onto a picture of a bunny. Very cute...I taped it to the wall in the kitchen.

Whole Foods ~ Whole People ~ Whole Planet

Today I went to check out the larger Whole Foods market in our area. That store is awesome...three times bigger than the one near our house. They have everything you can imagine (and free samples) and several places to sit down to eat...like a mini food court. I was in a hurry b/c I had to pick up Matthew from preschool so I was racing up and down the aisles looking for GFCF foods. I wish I had more time to explore their sushi and bakery departments. It's about a 30 minute drive so I probably won't go back for another 2 weeks, but next time I will plan on arriving early and eating lunch there. BTW, Matthew did not cry when I dropped him off this morning so I think those days are behind us. I believe he is enjoying preschool!

Umm, Eggs!

Today Matthew did something he has never done before...he answered a question (unscripted). I asked him what he wanted to eat for breakfast and instead of ignoring me or babbling he said "umm, eggs!" I said OK and took him downstairs to make scrambled eggs. Of course he barely touched them but the fact that he asked for them is amazing. I also gave him banana, bacon, GFCF cereal (Puffins) and his juice concoction. He ate all the Puffins which I am happy about b/c the last time I offered them he wouldn't take one bite. (He is very picky.)

No Tears & A Drawing!

Matthew completed his first full week of preschool today and for the first time did NOT cry when I dropped him off. I picked him up early, as I do 2x/week so he can come home for ABA with Jenn, and he was in a really good mood.

While Matthew was "playing" with Jenn, he drew me a picture (he's never used markers before) and after he made it he said "boat in the waddie" (he actually described what he drew) so Jenn wrote the title on the paper. I'm going to hang the masterpiece on the frig.

New Meds/Supplements

Matthew finished his one month course of Diflucan (to kill the yeast in his gut) and began Nystatin today (another anti-fungal but not as strong). This is the first liquid medicine that he refuses to drink from the syringe so I mix it in his juice. We have also started him on DMG with folic acid/B-12 and will begin the L-carnitine, P5P, CoQ 10, and lithium cream soon...we add a new supplement every 4 or 5 days so if he has an adverse reaction we'll know which one is the culprit.

Future Rock Star

Matthew received an electric guitar from Dorothy, his step-great-grandmother. He has always loved music and for a while he played his toy drums but now it is all about the guitar. (I think he was inspired by Elizabeth on Spectrum Connections.) He was so desperate to play a guitar he was using the fake one attached to a stuffed animal so we knew we had to find him one. Word got out and now he has a guitar! It even lights up and plays a few tunes. It's a cool toy and John has been playing it after Matthew goes to bed!

Kohl's -- "That's More Like It!"

Today I learned the danger of sending Matthew to school...shopping! Yes, retail therapy. I dropped $100 at Kohl's without even trying and everything I bought was on clearance...60-80% off (that's almost free, right?!).

Seriously, now that Matthew is away from me 27 hours per week I have so much more free time. I plan to use it wisely and read books on autism, join a support group, continue to chat on-line with my autism board, read autism blogs (do you notice a theme?), and oh yes, diet and exercise to lose lots of weight (fun!). I have also signed up to be a volunteer at his school, not in his class but in the main office and as an instructional assistant. Maybe I can sneak a peak through his classroom window while I am there!

Diaper Issue

Matthew started preschool last Wednesday and the teacher/aide there change his diaper standing up b/c he refuses to lie down for them. Up until Friday he has always laid still on the table for me but now he only wants to be changed standing up. I have a difficult time doing that (the diaper goes on crooked and often ends up leaking) and due to rash issues/previous surgeries for abscesses, I really have to inspect his privates and slather them with A&D ointment.

So now that he has learned the "new way" at school, how am I supposed to get him back to doing it "our way" at home without a major tantrum and tears? Any advice and/or mommy tricks would be appreciated.
* Update: I am now changing him standing up! (I'm getting better at it.)

Thomas the Terror

Matthew is terrified of Thomas the Train. When the show comes on PBS-Spout (the preschooler channel) he becomes very agitated and yells for me to turn it off. He wasn't always like this...there must have been an episode that scared him b/c he does not want to watch that show ever again!

Morning Chat @ Panera

I finally met Maria (one of my on-line friends from the autism chat board) and the parents of Peter (a very cute 4 year old in Matthew's class) and reunited with Caroline (Charlie's mom who brought younger brother Alex who is too cute for words!) We met at Panera, a local cafe with lots of yummy treats. It was the first time I've sat down to discuss autism with a group of parents and it was very informative. Peter has been in the PAC for 2 years now and has gone from non-verbal to talking up a storm. His progress has given me hope for Matthew and I look forward to chatting with my new friends again soon.

We Love Elizabeth!

We have enjoyed the Spectrum Connections DVDs for several months now. In fact, Elizabeth and Balloo have become family friends. I highly recommend this series...it is geared towards ASD kiddos but any toddler/preschooler would benefit from watching it. It is pure music therapy and the titles include: Movement, Emotions, Let's Talk, Let's Go, and Daily Routines. Here's the link: www.spectrumconnections.com.

Go Washington Redskins!

Matthew is all dressed up and ready to support his daddy's favorite football team.

He will be wearing a Redskins t-shirt to preschool on Monday if the team wins the wild card game.

The game is starting now...Go Skins!!!

* Update: they lost. :(

"Our Friend Jenn"

The lovely lady in pink is Jenn, Matthew's BCBA (ABA therapist). She comes to the house twice per week for 1.5-2 hours each visit. Matthew has lots of fun with her...I am listening to them laugh hysterically right now.

We set up a little table and chair in the upstairs guest room so they can "do their thing" without being distracted. We are very glad to have Jenn...she is a smart cookie and does an excellent job.

The Pizza Man

John decided to make Matthew a GFCF pizza last night. We found the mix at Whole Foods (365 brand) and used Prego sauce and vegan alternative/casein-free mozzarella block "cheese" which melted very nicely. The hardest part was the sticky dough...you could never roll it and toss it in the air! But it came out really good and Matthew was in heaven so it was worth John having his fingers glued together with dough and me using a spatula to separate them! :)

Two More Pics from School...

Here are Matthew's classmates (and one of the two aides). There is one little girl in the class but she wasn't there today. The second photo shows Matthew's friend Charlie crying and Matthew pointed to him and told the teacher "baby crying". He's been putting 2 words together lately...maybe he will be able to make a three-word sentence before his third birthday!

*** Matthew's First Day At School ***

Matthew started his special needs preschool today. He is in the Preschool Autism Class (PAC) with five other students ages 2 to 5.

We met Matthew's teacher in the main office and walked to the classroom together. He immediately spotted the FP school bus and played with that while we unloaded and took off. Today was the short day (only 3 hours versus 6) so it was a good day to start on. The teacher sent a note home that said Matthew cried for part of the day but did better than she expected and it would take time for him to get used to everything. He joined "circle time" about half way through and only stayed for a few minutes but that showed initiative and that he was interested in what they were doing.

He ate most of the lunch I packed for him and looked so cute when they brought him out to the car at the "kiss 'n ride". He had his new mittens on with his big back-pack strapped to his back. He seemed a little dazed in the car (like "what just happened?!") but was fine once we arrived home. I put him down for his nap at 3pm and he fell sound asleep. Tomorrow and Friday are long days so we'll see how he does and if he takes a nap there.

Matthew at a Farm!

Photo Sharing - Video Sharing - Photo Printing - Photo Books

Family Visit in TN

We drove down to Tennessee to visit John's family over the holidays (that's Billy and Janie in the photo). We divided the 12 hour drive into two days so it wouldn't be so hard on Matthew. On the way down we discovered that Matthew can read...he can recognize words and symbols on billboards, trucks, and store signs. Every time we passed a McDonald's, Target, Wal-Mart, Macy's, Holiday Inn, or Cracker Barrel he let us know!

We stayed with John's mom Janie and step-dad John the first night in Winchester. It was a rainy day so we couldn't ride the gator or visit the ducks but Matthew enjoyed playing with his new toys. His favorite is the wooden pizza. The next two nights we stayed with John's sister Julie and her family in Bell Buckle. She hosted a family dinner so we got to see John's aunt Melissa and uncle Steve and his grandparents. We also saw uncle Billy and Travis the next day.

The highlight of the trip was Matthew visiting a farm (we're city people so that was a first). He got up close and personal with the chickens, roosters, donkeys, and a horse (see above video). Santa brought James a Wii video game for Christmas so many hours were spent playing that. Our final night there John and I fell ill with the flu. We had to cancel our visit to friends Nick and Vic b/c we felt so terrible and didn't want to infect them. So we packed our bags and hit the road. Luckily Matthew never caught the bug!