Wednesday, December 31, 2008

aMAZEing Play

One of Michael's Christmas presents was a marble maze. We'd actually had it for a while, but he just wasn't ready for it. Or, we weren't ready to have marbles all over the house.

I have never seen him so excited over a present. As soon as we took everything out of the box and started assembling it, he wanted to help. He wanted to put things together, to build the track, everything. Once we had it all together, he was fascinated. In all, he probably had over 3 hours of appropriate play with a toy. I am totally amazed!

Sunday, December 28, 2008

Really Yummy Pancakes

We made these pancakes for breakfast today and they turned out really well. They actually rose, and tasted yummy. Michael ate 3!!

1 cup Tom Sawyer Flour
1 1/2 tbsp Dari Free Powder
2 tsp Baking Powder
1/2 tsp Salt
3 tbsp Sugar
1 tsp Vanilla
1 1/2 tsp EnerG egg Replacer w/ 1/4 cup very hot water
3/4 cup Water
2 tbsp Vegetable Oil

Mix wet ingredients in medium bowl.

Whisk dry ingredients together in larger bowl.

Pour wet ingredients into dry and mix until smooth.

Pour onto heated griddle, flip when pancakes bubble on top.

Saturday, December 27, 2008

Best Christmas EVER!!!!!!!!!

As you know from my pre-Christmas posts, I was dreading the holidays this year. Michael has been so unpredictable lately; I was just convinced it would be terrible. Boy was I wrong! This has to be the very best Christmas ever.

We went to PA to visit my side of the family – my parents, brother, and aunt. Michael was genuinely happy to see everyone, and had absolutely wonderful behavior the whole time we were there. A couple grumps when he was hungry, but not one meltdown. I was so proud of him!

When it was time to open presents, I expected him to run and hide. Last year, he didn't want anything to do with unwrapping, and got very upset when anyone suggested opening his packages. We ended up unwrapping his presents when he was asleep and doling them out over a few weeks. This year, he helped pass out presents, and was excited when one had his name on it. He opened all his presents happily, and was really excited over several toys. It was wonderful to see him so gracious and fully engaged in the whole process.

We had a mini Christmas with Steve's family today, and it went equally well. He was really excited to hear that his 'other favorite family members' were coming over. He was bouncing all over the place while we opened presents, but he did manage to open his with the same amount of grace and fun as he did at my parents. The best part was he invited everyone into the family room, which is 'his' room. And, he asked if they could come back tomorrow. It's the most social I've ever seen him.

Oh! And an even better part. We gave his cousins little jelly belly ice cream cones. They looked and sounded just like maracas. Michael wanted to go downstairs and bring up his percussion box. He handed out different percussion instruments for everyone to play. He was actually happy to be sharing his 'toys'!!! And he didn't care that other people were playing with them and making noise. Then, he switched the instruments around and did it again. It was absolutely amazing.

One last thing – we've been working on cleaning up before bedtime forever. Tonight, he cleaned up all his toys when I reminded him. Then, completely on his own, he went and put his kitchen stool away and turned out the lights in the dining room. I was completely floored. I don't know what has gotten into him, but I couldn't be more thrilled.

Needless to say, I am crying with happiness as I type this. I'd write more, but I am having trouble seeing the screen.

Tuesday, December 23, 2008

Merry Christmas Everyone

I'll be away from the blog for a few days for the holiday, so I wanted to wish you all a Merry Christmas now. I received this poem in my email today and it was just so fitting I had to repost it!

Autism Night Before Christmas
by Cindy Waeltermann

Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse

We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract

The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head

Did I get the right gift
The right color
And style
Would there be a tantrum
Or even, maybe, a smile?

Our relatives come
But they don't understand
The pleasure he gets
Just from flapping his hands.

"He needs discipline," they say
"Just a well-needed smack,
You must learn to parent..."
And on goes the attack

We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side

We know what it's like
To live with the spectrum
The struggles and triumphs
Achievements, regressions...

But what they don't know
And what they don't see
Is the joy that we feel
Over simplicity

He said "hello"
He ate something green!
He told his first lie!
He did not cause a scene!

He peed on the potty
Who cares if he's ten,
He stopped saying the same thing
Again and again!

Others don't realize
Just how we can cope
How we bravely hang on
At the end of our rope

But what they don't see
Is the joy we can't hide
When our children with autism
Make the tiniest stride

We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,

But what they don't know
Nor sometimes do we
Is that children with autism
Bring simplicity.

We don't get excited
Over expensive things
We jump for joy
With the progress work brings

Children with autism
Try hard every day
That they make us proud
More than words can say.

They work even harder
Than you or I
To achieve something small
To reach a star in the sky

So to those who don't get it
Or can't get a clue
Take a walk in my shoes
And I'll assure you

That even 10 minutes
Into the walk
You'll look at me
With respect, even shock.

You will realize
What it is I go through
And the next time you judge
I can assure you

That you won't say a thing
You'll be quiet and learn,
Like the years that I did
When the tables were turned.......

Monday, December 22, 2008

A great day, but...

Michael had a fantastic day today – he had his best day ever at school, he received his Project Lifesaver transmitter after school with no fussing, and he had a great time at his auditory integration therapy. So why am I so depressed? I feel so fortunate that we were able to get the transmitter, but depressed that we still really need it. I guess part of it is that we work so hard to get him all the biomedical interventions he needs, and we still have so far to go.

I keep reading stories of children who do biomed for a few months and have miraculous recoveries. Even if they aren't able to lose their diagnosis, they can mainstream at school and participate in family functions. I'm struggling so hard to find an appropriate placement for Michael, and he still has really bad days as often as good ones. I know I shouldn't complain, and I am truly grateful for all the progress we've seen.

It's so hard to read about children enjoying the holidays and knowing that I am dreading this holiday more than any other. Kids are supposed to like this time of year. And there are things that Michael loves – the winter lights, baking cookies, and spending time with family. But, he doesn't really 'get' the whole gift exchange thing, and is just as likely to melt down over a present being opened as enjoy it. And, even though he had a lot of fun decorating the tree, he won't let me turn the lights on to enjoy it. But, we take one day at a time, and it will eventually get better, right?

Saturday, December 20, 2008

Michael's Sugar Cutouts

Michael's Sugar Cutouts

1 Cup Spectrum Shortening
1 Cup Granulated Sugar
2 tsp Vanilla Extract

Beat 1 Tbsp Egg Replacer w/ 1/4 cup Hot Water

Add together in large bowl and beat until light and fluffy

In separate bowl, sift together:
2 1/4 Cups Tom Sawyer Gluten Free Flour
1 tsp Baking Soda
1 tsp Salt
1 tsp Xanthum Gum

Gradually add flour mixture to main mix until well blended. Dough will be crumbly but sticks together when compressed (hard).

Divide dough into pieces about the size of a large burger patty. Roll out between two pieces of parchment paper. (It's more of a press than a roll.) The dough is oily enough that it does not need to be floured.

Press out shapes and gently remove excess dough. Leave on the parchment paper and transfer sheet to cookie tray. If you try to remove them to a tray for baking, they will fall apart.

Bake at 350 for 11-12 minutes. Let cool on tray for several minutes. Again, transfer cookies on the parchment paper to a cooling rack. Cookies will be more sturdy once cooled.

The cookies would frost really easily. We don't really like them frosted, so we didn't decorate them. (I don't know how I would have kept Michael away from them long enough to decorate!)

Makes about 3 dozen cookies.

Great Day!

Today was a really, really good day. Michael tried really hard to amuse himself until 7:30, letting me sleep in a bit. The morning was pretty standard, with very little fussing. Once Steve had done the things he needed to do in the morning, he, Michael and Dan went out to the park to play and throw airplanes. It was cold, but Michael had a lot of fun, and great behavior!

While they were gone, I started cleaning the kitchen. It was a big job! When they got home, Michael played with Uncle Dan while Steve and I finished working in the kitchen. Of course, as soon as we finished, Michael wanted to make Christmas cookies. They turned out really well, and we all had a great time making them. I'll attach the recipe as a separate post.

I really like using the Tom Sawyer Gluten Free flour. It has a nice mix of flours, and doesn't leave an aftertaste. When we got to the cookie eating part of the evening, I tried really hard to tell the difference between these cookies and those made with wheat flour. I couldn't. I'm really sold of this flour!

So, I'm probably jinxing myself, but it really was a wonderful day!

Disappointed with CNN

CNN has decided not to feature the Generation Rescue team tonight, choosing to air a repeat instead. I can only imagine what pressure they caved to, but I am really disappointed that a news organization would back away from such an important interview. What ever happened to hearing all sides of an issue?

Friday, December 19, 2008

Generation Rescue on Larry King Live

Please watch Larry King Live on CNN tomorrow night 12/20 9PM EST, 6PMPST.

From Age of Autism
"Jenny McCarthy, JB Handley and Stan Kurtz will appear on Larry King Live Saturday at 9pm eastern, 6pm pacific. The show is focused on autism with very direct discussions about vaccines, how to lower your risks of having a child with autism and how to effectively treat children with autism for their medical issues."

Thursday, December 18, 2008

Lend4Health Needs Loan Requests!

I woke up to some great news in my email this morning. One of the loans we had given through Lend4Health had been fully repaid. There was $25 sitting in my paypal account! I am so excited that our small loan was able to help one child, and that we can now recycle the money to help another child.

The only bad news is that there aren't any current loan requests. I talked with Tori a little bit this morning via email, and she said she would really like to see an influx of new loan applications. The more applications she gets, the more children can get loans.

So, if you are a parent who is struggling to pay for your child's biomedical treatments, or looking for a way to avoid high interest credit cards and/or creative financing, now is a perfect time to put in a request. Tori really wants people to know that Lend4Health is for everyone, not just those in desperate financial straights. For those of us who really do have to get creative to get our kids the treatment they need, or who have been putting treatments off until money becomes available, this is a great option.

From what I can tell, the process is very simple: just fill out the request on the website (you do not need to provide any financial information); Tori checks references; and she disperses the funds. Smaller loans ($500 or less) seem to get funded the fastest, but I have seen larger loans go through as well.

Also, if you are interested in becoming a sponsor of Lend4Health, I know Tori has a ton of ways you can help. This time of year, it always seems like a good idea!

Wednesday, December 17, 2008

Quick & Easy Fudge

It must be Holiday time because we seem to be baking a lot. This tastes extra yummy and it pretty easy to make. Let me know what you think?

1 cup semi-sweet chocolate chips
1 lb confectioners sugar
1/2 cup cocoa powder
2 tbsp palm shortening
1 tbsp dari free powder
1/2 cup coconut milk
1 tsp vanilla extract

Lightly grease an 8x8 inch square baking pan

Combine chips, sugar, cocoa in large bowl

In small saucepan, stir together shortening, dari free and coconut milk over medium heat until
the shortening melts and the mixture just starts to bubble.

Immediately pour mixture over chocolate/sugar/cocoa mix. Let sit for a few minutes so the chips melt. Stir until blended. If the chips aren't completely melted, put in the microwave for 30 seconds.

Stir in vanilla and pour into baking pan. Smooth out the top and corners. Let cool completely before cutting.

Sunday, December 14, 2008

Lend 4 Health

I haven't mentioned Lend 4 Health in a while. There is a loan out that is only 65 dollars away from being funded. (Thank you Petra for pointing this out!!) If any of you wanted to lend just 5 or ten dollars, we could get Ethan his tests so he can get the treatments he needs. Please think about it! It's a cheap and easy way to make a difference for a child who has parents trying to help him.

UPDATE!!! An anonymous poster lent the rest of the money for Ethan's loan. Now, that's a holiday present!!

If you know of anyone who needs help paying for biomedical treatments, I know Tori is looking for the next loans to put up. Just go to Lend 4 Health's application form to apply.

Saturday, December 13, 2008

GFCFSFEF Chocolate Chip Cookies

Michael woke Steve up this morning to bake chocolate chip cookies. It is so nice to see him want to bake, even if his timing isn't the greatest. He loves gathering the ingredients, measuring and pouring. He's not quite so good at preparing the work area or cleaning up.

Now that the cookie recipe is pretty much finalized, I thought I'd share it. If you try the cookies, please let me know how they turn out for you?

GFCFSFEF Chocolate Chip Cookies

3/4 Cup Spectrum Shortening
1/4 Cup Refined Coconut Oil
1/2 Cup Granulated Sugar
1/2 Cup Dark Brown Sugar
2 tsp Vanilla Extract
Beat 1 Tbsp Egg Replacer w/ 1/4 cup Hot Water

Add together in large bowl and beat until light and fluffy

In separate bowl, sift together:
2 Cups Tom Sawyer Gluten Free Flour
1 tsp Baking Soda
1 tsp Salt
1/2 tsp Xanthum Gum

Gradually add flour mixture to main mix until well blended
Fold in 1 Bag (10-12 ounces each) Chocolate Chips (Lieber's or Enjoy Life) (For lower sugar version, use 5 oz, or half a bag)

Drop in rounded spoonfuls onto parchment paper
Gently Smoosh to 1/4 inch thickness (They don't spread, so you can place them closer together)

Bake at 350 for 13 minutes
Remove to cooling tray after a few minutes (if you move them too quickly they fall apart)

Dough can be refrigerated for several days, easier to work with when cold.

Makes about 3 dozen cookies.

Thursday, December 11, 2008

Autism Speaks Betrays Parents' Trust

The first article today made me sad, this one just makes me angry. When people ask me why I don't support autism speaks, it's hard for me to put my feelings into words. Katie Wright is so eloquent, and the facts really do speak for themselves.

Yet another David Kirby Article

We've been dealing with Michael's autism for a while now, and I've read my share of parent stories. But, for some reason, this one made me cry. At work. (But, during lunch at least) I guess it's just harder to see how autism affects those that we generally regard as super strong. I really hope that Captain Mickley is able to pull together a group of parents, and can finally get their voices heard.

Tuesday, December 9, 2008

Latest Autism Research

I came across this article in my readings and wanted to share it. It's a bit technical, but very interesting.

Also, today's Age of Autism is discussing the fact that the DTaP / Autism corrolation that was on DoD websites last week is now missing. Very suspicious.

I'm sorry that I'm not posting as much about Michael lately. He's been having some really great days, and some really terrible ones. Right now I'm just physically and mentally exhausted. We have some big things coming up this week, both at home and at work. I am hoping to back to a better posting schedule by the end of the week.

Sunday, December 7, 2008

Great Day!!

Michael had a really great day today. I gave him a toy that he's had for a few years, but never played with. It is a nesting woodland animals set, similar to the classic Matryoshka dolls.

He spent much of the day taking them apart and putting them back together and trying to figure out how to line the top and bottom up correctly. It was so nice to have him play appropriately with a toy for so long.

What was even better is that he wanted to interact with us and the toy. He'd bring the animals over, sit in my lap, and ask me to help when the pieces were stuck, and just generally talk about the animals when he wanted to make conversation.

Additionally, he helped a lot with making his cookies and cleaning up. Definitely a great day!

Thursday, December 4, 2008

The Pentagon -- A Voice of Reason on Vaccines and Autism?

David Kirby is really on a roll... this Huffington Post article raises the following issues/questions:

1) Autism may be an "adverse event" of Tripedia (DTaP) use

2) Patients who have bad vaccine reactions should avoid multiple vaccines in the future

3) Patients who develop serious neurological diseases might need vaccine exemptions in the future

4) Mercury, and possibly thimerosal may cause autism and dementia

5) Alternative biomedical treatments may be prescribed for thimerosal exposure

Definitely an article you will want to read for yourself!

Enzyme Webinar!

As a followup to my last post, I just found out about a free webinar on Digestive Enzymes and Autism. If you are at all interested, here is the information:

Digestive problems in autism: the role of enzymesJoin us for a Webinar on Tuesday, December 9

Space is limited.Reserve your Webinar seat now at: .

Presenter Dr. Devin Houston has an extensive background in enzyme research and is the inventor of several enzyme-based products.

Date: Tuesday, December 9, 2008
Time: 9:00 PM - 10:00 PM Eastern Standard Time

Discussion will include: ·How digestion is affected by oral supplementation of enzymes ·Why appropriate enzyme products may be an alternative to some special diets ·How enzymes address digestive-related issues specific to those on the autism spectrum ·How to identify differences between enzyme products ·Signs that may determine who can benefit from enzyme use

Attendees will be able to type questions for Dr. Houston.

After registering you will receive a confirmation email containing information about joining the Webinar.

System RequirementsPC-based attendeesRequired: Windows® 2000, XP Home, XP Pro, 2003 Server, VistaMacintosh®-based attendeesRequired: Mac OS® X 10.4 (Tiger®) or newer

Wednesday, December 3, 2008

Michael's Enzymes

I've been talking with a lot of people lately about the enzymes that Michael takes and why he takes them. I thought it would make the most sense to just write this out here and hope it reaches as many people as possible.

When Michael was first diagnosed with autism, we heard about the Gluten free/Casein free diet as a possible treatment. He was so limited in the foods he was willing to eat, and so underweight, I wasn't willing to further limit his diet at the time. I heard about a book, Enzymes for Autism and Other Neurological Conditions, and decided to try the enzymes instead of the diet. There is a wonderful yahoo support group for people reading the book and using enzymes.

There are three enzymes that we give him: AFP Peptizide, Zyme Prime, and No Phenol, all produced by Houston Enzymes.

AFP Peptizide helps break down gluten, casein, and soy proteins. It is really the enzyme that can help instead of removing these foods from the diet. However, if your child is allergic to any of these proteins, or has celiac disease, the enzymes cannot replace removal of the foods.

Zyme Prime helps with the digestion of carbohydrates and fats. If your child is lactose intolerant, this enzyme can help digest the lactose (a sugar/carbohydrate).

No Phenol helps digest fruits and vegetables. Michael has a strong hyper reaction to bananas, but if we give him this enzyme with bananas, he can tolerate them just fine. It also seems to help with any food coloring in his food.

When we first started, Michael was unable to swallow capsules, so we bought the powdered version of the enzymes and mixed it with juice. You have to be careful to only mix right before giving the enzymes to your child. Otherwise, the enzymes will act on the juice and spoil it.

Now that Michael can swallow capsules, we get one product, Trienza. Two capsules of this product combines one dose of AFP Peptizide, one dose of Zyme Prime, and a half dose of No Phenol. If Michael is eating a lot of fruits/vegetables with a meal, we will give him an additional No Phenol capsule.

I love that Dr. Houston is so responsive to the needs of our children. His products are safe, and he is responsive. The website is great resource to understand how enzymes work for our kids, and he is a genuinely caring person. He came out to a parent group meeting I attended at his own cost, gave a thorough presentation, and answered all our questions. It was just obvious that he cares about our kids. I appreciate that.

After taking the enzymes for over 3 years, we decided to try Michael on the GFCF diet. Most children who have problems with Milk also have problems with soy, so we eliminated that as well. We also started to see Dr. Megson. We saw wonderful results with the diet, and Dr. Megson ran blood tests that indicated Michael is allergic to Wheat, Egg, and Peanut. Since the enzymes cannot help with physical allergies, it made sense that Michael was so responsive to the diet.

Since there seems to be a yahoo group for everything, I highly recommend the GFCF Kids group, for information about the diet and pretty much everything biomedical/autism related.

The last question people ask is why Michael still takes the enzymes even with the diet. The short answer is to be safe. His digestive system is such a fragile thing, we don't want to take any chances on cross contamination, or him eating something he isn't supposed to. By taking the enzymes before eating, we have an extra level of digestive safety.

I hope this helps with any questions you have about Michael's enzymes. If not, please leave a comment or send me an email. Michael is always my favorite topic!

Sunday, November 30, 2008

It's Holiday Time!

Every year we start our Christmas decorating the weekend after Thanksgiving. First thing yesterday morning, Michael wanted to put up the tree and go see the winter lights. We explained that we had to clean up the house first, and then start decorating. And before any of that, we had to go to his Craniosacral appointment. He spent most of the appointment explaining that our house is a mess and he had to help clean up before we would put up the Christmas tree. Of course, he had a huge temper tantrum on the way home, so we didn't get as much accomplished yesterday as we had hoped.

Today, we did manage to get the decorations out and the tree up. Steve is still working on the lights, though. My personal goal is to be able to put up the ornaments with Michael tomorrow after school. I have never seen Michael so excited about Christmas. He found a gingerbread man ornament and has been running around the house saying "Run, run as fast as you can. You can't catch me, I'm the Gingerbread Man!" He's absolutely adorable!

There is a huge Winter Lights Festival that we take Michael to every year. He loves going and would go every day if only we let him (and we could afford it). Normally it starts the Friday after Thanksgiving. This year, it doesn't start until next Friday. They did have 'preview days' this weekend, but it would be impossible to explain that they were open for two days, and then closed the rest of the week. So, we now have next Friday circled on the calendar and Michael is counting down the days. If anyone from the Festival reads this, please reconsider a season pass?

It really is wonderful to see Michael so excited about Christmas. What's even better is that he doesn't care about presents at all. He just loves the decorations, the snow globes, and spending time with relatives he doesn't get to see that often. After reading about people getting trampled on Black Friday, just spending a little time with him makes me remember all the real joy of the holidays!

Saturday, November 29, 2008

Getting more cynical...

I read this post today and just am having a harder and harder time believing that anyone at the CDC/FDA/AAP/etc actually cares about kids at all, let alone keeping them healthy. How do they sleep at night?

Thursday, November 27, 2008

Happy Thanksgiving!!!

Yes, It's GFCFSFEF. (Except for the fondant decorations, which we just took off for Michael)

Wednesday, November 26, 2008

Mommy Temper Tantrum

I wanted to throw a temper tantrum at work the other day. A project was dumped on me with little warning, and I had no idea how to complete it. Being given a huge list of requirements without the technical knowledge to complete the project was very upsetting. My boss happened to be out on vacation, so I had no immediate support. Yes, throwing something seemed like a great idea at the time.

The next morning I really didn't want to go into the office. I hadn't slept well, and my stomach was in a knot. I had no idea how I was going to pull this project off, but knew that I didn't have any choice. I was not in a good mood.

As I drove into work I realized that I was going through what Michael faces almost daily. His teacher occasionally sends home classwork that he doesn't manage to complete in school for him to do at home. Sometimes, it's pretty easy to see where he gets lost and needs help getting started, sometimes it's not so obvious. But, I can imagine him sitting down with a new activity and just being scared and overwhelmed.

I am going to try and take the lessons I learned from my project at work and see if I can help Michael map out a strategy for dealing with project anxiety. As I calmed down and tried to approach the project step by step, things got easier and much less scary. I would love to see him develop the skills to take things slowly, one at a time. I certainly don't want to condone having a temper tantrum in school, but this week, I'm a little more understanding!

Monday, November 24, 2008

What a weekend!

Michael was sick for a good part of the weekend, so there isn't a lot of news there. But, at one point he was talking with Uncle Dan and told him - "It's getting cold outside .... Uncle Allen and Cousin Jenny and Cousin Johnathan will come to visit soon." I was totally blown away when I heard this.

Steve's extended family comes to visit twice a year - once over the summer (around their Mom's birthday), and once around Christmas. I know that Michael doesn't pay much attention to Christmas, but I didn't realize that he paid so much attention to when people came to visit. I thought it was so cool, considering he hasn't had all that many Christmases to come up with such a great generalization.

I know that I mention the Age of Autism site a lot, but it's one of my favorites. I would ask you to please read this article about Gulf War Syndrome. It really makes some great connections and makes you think about all the things we aren't being told.

Friday, November 21, 2008

Asperger's Programs in Public Schools

The county I live in is supposed to be have one of the best Public School systems in the country. However, when it comes to providing a consistent, appropriate education for children with high functioning autism / Asperger's syndrome, they are failing miserably. There was a Special Education Advisory Committee meeting last night where the main topic was whether or not an Asperger's program was needed at the high school level. I don't understand how there can be any question.

I was blown away when the Director of Special Education Services said that there wasn't enough demand for the program. We all know that autism rates are going through the roof all over the country. Our county is no different. What is different is that even though there are very successful Asperger's programs available for both Elementary and Middle Schools, very few people know they exist, and the IEP meetings seem designed to keep kids out of these programs.

I was also shocked with the complacency regarding student failure. I don't understand why a student has to fail multiple times in their current placement before anyone would consider finding one that work better.

The easy explanation is that every child on the autism spectrum is different, with widely different challenges and support needs. While this is true, I believe that an educational team (teachers, paraeducators, and therapists) that is trained in working with children with autism has the highest chance of success. Trained professionals working with children who all have a similar disability can make a huge impact. This is clearly demonstrated in the few programs designed for children on the high end of the spectrum. Those parents who have children in an existing Asperger's program were generally happy with the education their children are getting, and were worried what would happen to their children when they reached high school. To simply give up on providing a consistent educational experience because it is difficult is beyond irresponsible.

When Michael was evaluated for his official disability code, the school psychologist told us she was on the fence between a diagnosis of High Functioning Autism and Asperger's Syndrome. She told us that there wasn't much difference between the two diagnoses, and that it wouldn't affect his coding/educational opportunities. Apparently, she was wrong. Because she decided to go with the autism diagnosis, the school wouldn't even discuss the possibility of Michael going into the Asperger's program. So, he's stuck in a learning center that is designed for students with many different diagnoses, where most students are not able to keep up with the standard curriculum.

Even though Michael is extremely bright, he is essentially failing this year. When he finished Kindergarten, he was reading at a level 11. At the end of the first quarter this year, he is reading at a level 10. Going backwards is not a good thing. Additionally, his report card states that he has 'minimal understanding' for every topic under Writing and Language. He has gone from 'complete understanding' in 75% of the Math categories in Kindergarten to 50% of the first grade. Again, going backwards.

When we discussed his lack of progress at the parent-teacher conference, his teacher indicated that Michael's behavior is getting in the way of obtaining information from him. He has trouble getting the words to answer questions and is easily overwhelmed, especially in writing assignments. Even though she has tried to implement strategies and accommodations from his IEP, results have been sporadic at best. She was going to ask for an autism consult to see if an autism expert could help. We haven't heard anything back yet.

I am very frustrated because I know that Michael can produce the information needed to pass his evaluations. When I sit with him to do his homework, he can do it. If I know that the main focus of the assignment is reading comprehension, I offer to scribe for him. Last night, he read a poem followed by three questions. When I asked him to tell me the answers, rather than to try to write them, I got the correct answers almost immediately. Yes, he has huge focus issues, but he can do the work; he does understand what he reads.

I don't want to be overly harsh to his teacher and the paraeducator. They are doing the best they can with the resources available. They are both extremely caring professionals who obvious like Michael and want him to succeed. The problem is that he has complex needs, and is not in an appropriate setting to address those needs.

So, where do we go from here? I honestly don't know what the options are, and what steps are in his best interests. We will probably look into getting private testing done to see what his best educational diagnosis is, but that is expensive and money is extremely tight at the moment. Anyone have good advice? If so, please leave a comment!

Wednesday, November 19, 2008

Good day so far!

OK, today is definitely a good day. Never mind that it's only 9am. When my alarm went off, Michael came bouncing in to see if it was time to go downstairs yet. I told him I needed to get my shower, and then we could go downstairs. He said, "OK, I'll play while you take a shower." No fussing, no impatience, just sitting at the top of the stairs reading a book. Definitely a good start.

When I got out of the bathroom, Steve was out of bed and he and Michael had already gone downstairs. I try to let Steve sleep in since he is usually up working until 2 or 3am. But, today he realized I was a zombie getting out of bed and that Michael was trying so hard to be patient, so he got up and got the day started. By the time I got downstairs, Michael had already had all his capsules and his breakfast was ready. I got a huge "Good Morning, Mommy!" when I walked in the kitchen. What more could I ask for? Oh yeah, Steve had a cup of coffee waiting on my desk. Have I told you how much I love my husband?

I got Michael dressed and signed on to work. No work crises, and still a happy kid. Michael asked nicely if he could watch Nemo while I worked. He ate breakfast and watched Nemo. He still takes a lot of prompting to remember to eat, but at least I don't have to physically put the fork in his mouth (much).

At drop off, I got a great hug and a kiss, and a "good-bye Mommy". He's only been using our names for a week or so, and it makes me smile every time. So, now I am home and ready for a busy work day, but I couldn't be happier. Definitely a good day.

Monday, November 17, 2008

Bad Mommy, Happy Mommy!

I feel like the worst mother in the world, but I am also incredibly happy. The last couple weeks have been really rough for Michael. He's been emotionally fragile, aggressive, distant, weepy, you name it. The worst part was, we had no idea what started it all – until Friday. After another terrible day at school, Steve finally made the connection that all the behavior started a few days after we switched one of Michael's supplements from a clear liquid to a bright orange tablet. Yes, we should have known better. Of course we should have realized that the tablet had food coloring that Michael can't tolerate. We were so caught up in the allergy information, we totally missed the food coloring.

Saturday morning we switched him over to a 100% hypoallergenic capsule. We started seeing slow behavior improvements. Today, we have our sweet kid back. His teachers even commented on how hard he was trying to have good behavior at school! So, I feel like the crummiest mother possible for missing something that affected him so badly, and should have been so obvious. But, I am just grinning from ear to ear about having him 'back'!

I've been taking a food safety class in the evenings this month, so I haven't had as much time with Michael as I'd like. After hearing what went on while I was in school tonight, I want to drop the class and just be home more. But, I only have 2 classes left, so I think I can manage.

On the way home from his social skills group, Michael told Steve that he wanted to make cupcakes. In the past, he might help with one ingredient and pouring the batter. Tonight, Michael participated in every step: finding the recipe, gathering/measuring the ingredients, mixing the batter, and pouring it into the paper cups. He also supervised when Steve put the cupcakes in the oven, tested them, and took them out to cool. He was so proud of himself, and couldn't wait to taste his creation. When I came home tonight, he eagerly told me about making the cupcakes with Daddy and that they were 'delicious treats'. I couldn't be more proud!

The other amazing thing tonight was that he got a paper cut. Normally, he would get really upset over being hurt, but not let anyone do anything to help. Most times, he couldn't even express what had happened. Tonight he was sounding upset, so Steve asked what was wrong. He answered, "I have a paper cut." When Steve asked if he could see it, Michael said "No, I need a bandaid." Then, actually let Steve put a bandaid on. He wouldn't let Steve wash it, but didn't need to know that he had snuck some Neosporin onto the bandaid.

He was a little grumpy when it was finally time for bed, but I think he was just worn out from such a long, eventful day. I am so glad to have my Michael back. And I promised him I would be much more careful with any changes to his supplements!

Sunday, November 16, 2008

Steve and I went to the WrightsLaw Parent Bootcamp over the weekend. I am still overwhelmed at the amount of information presented in such a short period of time, but came away with a few key concepts that I wanted to share.

As parents of special needs children, we are in a marriage with the local school system, with no possibility of divorce. We need to make sure that we treat that relationship respectfully, and work collaboratively with the school to make sure that our children get the education to which they are entitled.

It is vital to maintain complete and accurate records of our child's progress. We spent a great deal of time in class learning to read standardized test scores and understanding the bell curve. Once you understand how to compare data over time, you have an objective measure of your child's progress. Charts and graphs can be powerful tools to show progress and regression.

There are specific criteria you can use to evaluate IEP Goals. I had heard the term SMART goals before, and it applies perfectly to an IEP. SMART stands for specific, measurable, action words, realistic, and time sensitive. We will definitely be reviewing Michael's IEP to see where the goals can be smarter!

There are a ton of resources available to help parents become the best advocates possible for their children. Some of the ones I want to remember are:

WrightsLaw main website
Council of Parent Attorneys and Advocates
IDEA 2004 Statute and Regulations
Education Resources Information Center

I'll probably add a new section of Special Education links to keep these current, and add more as I find them.

Saturday, November 15, 2008

Another David Kirby Article

If there is anyone who still doesn't believe there is a link between genetic vulnerabilties, vaccination, and autism, please read this article by David Kirby. It talks about the rate of autism in Somali immigrants in Minnesota and is truly scary.

Thursday, November 13, 2008

Flight Risk Realized

Michael ran away from school today - he actually made it outside the building. His class was in line after PE, and the teacher was bending down to help another student with his jacket. As soon as she was distracted, Michel walked away. Someone happened to be walking in the front door of the school, and out he went. If someone else didn't see him walk out the door, they wouldn't have started looking for him outside. They did catch him fairly quickly, but it could have been a lot worse. I am so thankful that Michael has such a great guardian angel.

This isn't the first time he has wandered at school – it's actually the third. Every time he seems to get further. I have looked into a program called Project Lifesaver, which would allow the police to find him quickly if he wandered far enough that he couldn't be found. But, I am nervous about that, too. The key to the program is attaching a GPS device with radio and cellular frequencies to his wrist or ankle. I have heard many times that we are supposed to limit his exposure to electronics, and this would be attached to him 24/7.

Does anyone have any experience with this? Any advice for me? I'm pretty much at wits end right now and not at all sure what to think.

Crazy days

What a crazy week. I seriously overscheduled this week, and now I'm paying for it. Plus, Steve and I are both dealing with a cold or allergies giving us a nasty cough and sore throat combination. Luckily, Michael is fine. It could be that the bug giving him asthma problems last week just finally found it's way to us.

We got Michael's report card yesterday, and he's actually doing pretty well academically. The only big problem is getting information out of him, verbally or in writing. Even when he knows the material, he just has a hard time pulling the answer out of his head in a way someone else can understand. Definitely something to work on.

Michael's behavior at school has been really terrible lately. To the point that his teacher wants to ask for an autism consult for behavior. It sounds scary, but it really just means she's going to ask an autism 'expert' from the county autism program to observe Michael and give some advice as to how to help him deal better in the classroom. He is just so afraid of everything that he would rather tantrum than attempt some of the activities - even activities that he's good at. We quickly gave permission for the consult, so hopefully it can happen soon.

Steve and I are going to go to a WrightsLaw Parent bootcamp tomorrow and Saturday to learn more about special education law. I am so excited, since they have such a great reputation. Even though we haven't had any problems with getting Michael the services and accommodations he needs, it can never hurt to have information.

Time to get back to today's challenges and hoping for calm.

Tuesday, November 11, 2008

Minor Social Awareness

As Michael and Steve were driving away from the school yesterday, several people were standing outside the door to a nearby house. Michael said "They are visiting them." Steve thought it was really great that Michael was noticing what was going on and telling him about it, and getting the pronouns correct. But what I really liked was that he was talking about a social event. He could have talked about where the people were, or how many, but he chose to say they were visiting. I know it seems so small, but it is an awareness of social intent he's never shown before.

The other wonderful thing from yesterday was absolute bliss. Michael woke up before we did, and amused himself. He read some books, played in the hallway, even came in our room to use the bathroom. Never once did he try to wake me up. When my alarm went off, he started cleaning up the toys he had dragged into the hallway and then came over to talk to me. I was truly amazed. I don't know if it will ever be repeated, but it was definitely a good morning!

Sunday, November 9, 2008

Free Domino Game, Today Only

I wanted to let anyone who reads this know about the GiveAway of the Day website. Every day they give away a computer program for free. On most weekends, they give away a game. This is how we've gotten most of our computer games. They don't give out the newest or slickest games, but the ones we have gotten are generally fun. They try to have a good variety, which means that not all games are appropriate for children, but some are. Always prescreen before letting your child play!

Today's game is Buku Dominoes. I was surprised at how quickly Michael picked up the game. The game automatically highlights all the pieces you can play, which makes it a lot easier for him. I was impressed that he was able to scan the play field and find where he could use the highlighted tiles. Scanning lots of information has always been difficult for him, so this game makes me really happy.

Saturday, November 8, 2008

Side trip into our 'other' life

This is completely aside from the normal autism blog stuff. Many of you know that Steve and his friends are a bit spacey. I mean, they do space stuff. Last weekend they submitted an entry in a contest put on by the Space Frontier Foundation. If you'd like to see another part of our world, you can read more about the contest, or see the video they submitted. I think it's pretty cool, but then again, I'm in love.

Amazing, scattered day

What an amazing day! Michael has always had very scattered skills – today he had an amazingly scattered day. He was completely connected and 'with us' all day. More so than he's ever been. I'm going to write about a few of the wonderful things he did today. Just imagine mini-tantrums sprinkled liberally throughout. It's almost as if his brain is making connections so quickly he needs to literally blow off steam. It's absolutely astonishing to watch, from a safe distance!

Michael spends a lot of time with Uncle Dan on the weekends. He likes to go between floors and people, from one activity to another. At one point, Dan was teaching him to throw underhand. When Michael made a catch, Dan told him "Nice catch". Michael's immediate response: "Nice throw". It's hard to express why this is so cool. He doesn't have much social language, and the concept of a reciprocal conversation is so hard for him, but this just came out naturally.

After dinner, Michael asked for a treat. He doesn't normally ask for food, but it's something he's been working on. I told him I had a new treat, and asked him to wait a minute while I got it ready. Steve had gotten a bag of cinnamon granola from Whole Foods, and I was anxious to try it. I was not sure at all if Michael would eat it, since it was very crunchy and had a very strong cinnamon flavor. He tried it quickly, and even asked us to refill his plate! I was shocked.

At another point in the day, Michael and Dan were out playing in the sand box on our deck. The wind was blowing and leaves were falling from the trees. Michael made the connection that every time there was a strong gust of wind, he could look at the trees to see a huge flurry of falling leaves. I don't remember exactly what he said, but he clearly enjoyed the cause and effect.

I'm not sure where all these changes are coming from. We've pretty much been keeping up with the protocols we started this summer. We had an initial craniosacral eval this week, with a few minutes of treatment. I can't imagine that it could have so much effect so fast. And if it is the cause, couldn't we have the great stuff without the tantrums? Please?

Friday, November 7, 2008

I am so glad it's Friday!! Michael had two days off from school this week, making for a very bored child. It's a gorgeous day here today, so Steve and Dan are going to take Michael to a park after school. Last week, they introduced him to throwing gliders and watching them fly across a field. It's just a guess, but I am sure he will be very excited to do it again this week.

My heart smiles every time I see him enjoy 'typical' kid games. It wasn't that long ago that he didn't have the coordination to throw a plane, or the eye tracking to watch it fly. Now, he laughs and giggles as he runs across the field, chasing them. He still gets tired a lot faster than the other kids, but he has helpers to chase when he needs a break.

Michael also starts another session of swimming lessons tomorrow. He goes to a local program geared toward kids on the spectrum, Sports Plus. The classes are designed to be somewhere between a fully adapted program and a standard swimming lesson. When he first started, Michael was afraid to get in the water without someone he knew. Now, he goes off happily with whoever is teaching. He's not quite swimming yet, but he can use a kick board and put his face in the water. Progress is good!

Other than that, I am looking forward to a calm weekend. I have a mountain of filing to do and the dust is taking over, but I am hoping to squeeze in some quiet cuddle time too!

One last thought. Do you know about the sensory friendly films? It's a project between AMC Entertainment and ASA. There are many locations around the country showing Madagascar 2 tomorrow at 10am. We can't go because of swimming, but it's a wonderful opportunity.


OK, I should have known better than to plan ahead. I got to school to find a child about to go into tantrum. It was so bad I had to call Steve to come get him into the car. So, now I'm scratched and bruised and just don't feel like being positive. Tomorrow will be a better day, right?

Tuesday, November 4, 2008

Learning to Swallow Capsules

Every day I understand more and more how much easier life is now that Michael can swallow capsules. Before, if we wanted to go away for a weekend, we had to pack a small cooler's worth of his pharmacy. Now, it's just a couple pill cases and two small bottles. So, much easier!

I had read about different techniques for teaching children how to swallow pills, but they didn't really seem to apply to Michael. As with most children on the spectrum, the best way to accomplish anything with Michael is to play to his strengths and interests. He has always loved playing with water, so we decided to make it a game.

· First, we had him practice holding a small sip of water in his mouth, without swallowing it. (This is the part he loved!)

· Then, we had him put a capsule toward the back of his tongue. We were careful to let him do the placing, so he wouldn't get over anxious. We also made sure that he didn't put it far enough back that it would cause him to gag.

· Next, we had him take a small sip of water and hold it in his mouth. He was a little more wary with the capsule, but still loved the game.

· Finally, we asked him to swallow the water. He was distracted enough by being allowed to play with the water in his mouth that he was able to easily swallow the capsule.

Once he realized what he had done, he was so proud of himself! He switched entirely over to capsules that weekend, and hasn't looked back since. He's been suspicious of new capsules and tablets, but has really adapted well.

I realize that this approach to swallowing capsules won't necessarily work with every child. I think the key is to really think about what your child likes, and is good at. Then, take those strengths and try to make a game of it. Sometimes, they just surprise you.

Monday, November 3, 2008


I wanted to ask everyone to please read this wonderful article from Age of Autism. I keep thinking that one day someone is going to have to answer to the damage done to our children. The article doesn't give a great hope for that, but does show that a vaccine conspiracy is not far fetched at all. Please take the time to read the article. Thank you!

Friday, October 31, 2008

Halloween Fun

What a fun Halloween!! I wasn't really expecting much this year, since Michael has been so sick this week, and has been avoiding any discussion of Halloween. He seemed happy and relieved to stay home from school today - missing the parade and party. But, we had found a discount costume, just in case.

When we started getting the candy ready, he was a little wary. Then he seemed a little sad that all the candy was 'give away candy'. It was wonderful to see his eyes light up when we gave him a few candy corns that he could eat. Then, when the doorbell rang, he was so happy to give out treats and wish everyone a Happy Halloween. It was so cute. And, he was an absolutely adorable little fireman.

Flovent has SOY!!!!!!!

OK, sometimes you learn things the hard way. Sometimes you learn them the very, very hard way. We gave Michael his morning dose of flovent. Within minutes he went from a happy child to a complete terror. Just before the dose, he had told Steve what was happening in the movie he was watching. Soon after the flovent, he threw two trains across an entire room. It took him over 20 minutes to calm down. Once he was calm, Steve checked the information sheet on flovent. Sure enough, it contains soy lechitin. We won't be giving him any more. Now, I just have to figure out how to get it out of his system. I never expected an inhaler to have soy!

Update: We called the manufacturer, because newer information no longer lists soy as an ingredient. They said the batch we had did NOT have soy, but want us to send it in to check for contamination. All I know is that Michael was nuts right after it, and is thankfully much calmer now.

Busy Day - Dr Appt, IEP Reivew, and a Nutritional Consult!

Yesterday was a busy day! We had a doctor's appt, an IEP review meeting, and an appointment with our nutritionist. Michael was up all night Wednesday night coughing and starting to wheeze, very typical of the beginning of a cold for him. So, I kept him home from school and made an appt with the pediatrician. She checked his lungs and said they were clear, but that she wanted him to use both the albuterol and the flovent for the duration of the cold. Michael loves his 'breathing tube' because it always makes him feel better.

Once we were back home and settled in, it was time for Steve and me to go to Michael's IEP review meeting. I always get nervous before the meetings, just because I've heard so many horror stories. But, we've been very lucky. Everyone who works with Michael is so caring, and really does have his best interests at heart. Of course, I got even more nervous when I realized that the school principal was sitting in on the meeting! After Michael's behavior at school on Wednesday, I was convinced there was a major problem. Thankfully, the principal said very quickly that he was sitting in on more IEP meetings since the Learning Center Administrator's position had been cut to half time, and he was trying to help out more.

The meeting actually went very well. I had been concerned that Michael wasn't doing as well in math, based on the 'math facts' tests that come home each week. Apparently, that's only a small part of what they are working on, and is his weakest area. He is doing well in almost every other part of the math curriculum. We think the problem with the math facts is more an attention issue than anything else. In fact, attention seems to be his biggest problem at school – attention and anxiety. I believe the two are strongly related.

Michael's other big issue is writing. He has such poor muscle tone that his hand tires very easily. If he is presented with a large (to him) writing assignment, he will often work hard to get out of the writing, rather than just do it. The OT assessment that we brought also agreed that his writing skills are very weak, and the muscles themselves are weak. Based on all this, he will be getting a small word processor that he can use, but only when he needs it. I definitely want him to keep building up the hand/finger muscles he has, but need him to be less anxious about when he just needs some help. I really hope this works, because I know he has a lot to say!

After the IEP meeting, we came home and I settled in to get some work done. Most of the afternoon was spent actually working and getting some code written. Michael settled in with his uncle and had a quiet afternoon. That was very nice!

The last scheduled event of the day was our nutritional consult. I've been concerned about yeast coming back, and excited about all I learned at the conference last week. It was nice to talk with Kelly and come up with a good plan to keep moving Michael forward. The best part – we are now down to just one liquid supplement! Everything else is in capsules or pills. It's nice when things get easier! Of course, I have some new things to order, but that just comes with the territory.

The only bad part is that I think Michael is allergic to Kelly's dogs. They are supposed to be non-allergenic, but he finds a way! I think it's worse because he plays on the floor and gets more exposure. On the way home, he had a major tantrum – hitting, kicking, taking off his seat belt. What should have been a ten minute drive ended up taking closer to half an hour. But, he was over it soon after we came home and gave him some benedryl. It's hard to be too angry when you know he's not feeling well.

After we all settled in, I had more work to do since I lost time to the morning meetings. But, the rest of the night was calm. I'm glad we got so much accomplished during the day, but sometimes a nice, peaceful night is worth it's weight in gold! Who knows what today will bring!

Wednesday, October 29, 2008

A Long, Long Day

Michael has had a pretty good week, at home and at school. But, tonight he is fighting a cold and is generally pretty grumpy. His teacher called today to let us know he'd had a few meltdowns at school and was just really struggling today. I think he got overwhelmed with a writing assignment had an allergic reaction to touching the outside of a pumpkin, in addition to just feeling pretty lousy. I feel bad for him, but am so glad that he decided to go to bed early tonight.

If you haven't cast your vote for Lend 4 Healthyet, please do! The contest is almost over, and your vote can make a difference!!

Monday, October 27, 2008

Conference Summary

My brain is so full. After attending the DAN! conference in the spring, I thought I was prepared for the barrage of information at the Autism Expo last week. I was wrong. I guess when you hear a message several times, from several speakers, it starts to sink in. I'm finally making more connections between environmental triggers, mitochondrial damage, toxins, inflammation, and the body's ability to function. I never realized how interconnected everything is.

Before this conference I was relying on our team to guide us in the right direction regarding supplements, medication, and therapies. Now, I'm finally starting to understand how they all interact. I am so thankful that we've had such good experts to manage Michael's recovery! Every lecture further impressed on us the need to heal Michael's immune system and digestive tract, and to minimize further damage.

Coming out of the conference I am energized on several fronts. I really want to make sure that we keep Candida at bay. I've seen the terrible effects it has had on Michael, and I never want it back. We have a nutritional consult scheduled for this week, and I'm really looking forward to it. I am also trying to get through the Feast Without Yeast book. It sounds scary to implement, but if it's our only choice, that's what we will do.

I also want to investigate Cranial Sacral therapy. Until the lecture by Dr. Simkovich, I never understood how this therapy works. Now, I understand how the tiny movements in the cranial bones can affect the brain. Once you think about the interaction between the anatomy, the brain, and the spinal column, it starts to make sense. Now, to find a local practitioner with experience and results!

The more I hear about HBOT, the more I want to try it. Given the circumstances of Michael's birth (heart beat issues, oxygen, unplanned C-Section), I think there is a strong chance that it would help. Again, trying to find a local practitioner is next to impossible. Buying our own unit, or renting one, is so expensive. If you see a donate button pop up one of these days, you'll know why!

I'll probably have more to say over the next week or so, but for now I think I'll leave the conference summary here. Although, another good thing is that I think I'll be able to convince Steve to go with me again. And that's a wonderful thing!

Thursday, October 23, 2008

A Prayer to Share

I didn't intend to write an entry today since we're packing up to go to Pittsburgh. But, as I was packing a prayer that my Aunt (also Michael'd GodMother) gave me, I really wanted to share it with you. I've changed the references to Michael, but you can easily change them to the name of your child. It just seems like such a powerful, and appropriate prayer for our children.

A Student's Prayer
by St. Thomas Aquinas

Creator of all things,
True Source of light and wisdom,
Origin of all being,
graciously let a ray of Your light penetrate
the darkness of Michael's understanding.

Take from him the double darkness
in which he has been born,
an obscurity of sin and ignorance.

Give him a keen understanding,
a retentive memory, and
the ability to grasp things
correctly and fundamentally.

Grant him the talent
of being exact in his explanations
and the ability to express himself
with thoroughness and charm.

Point out the beginning,
direct the progress,
and help in the completion.

I ask this through Christ our Lord.

Wednesday, October 22, 2008

A Really Good Day!

Today was a really great day. Michael did well at OT, cranked right through his homework, and just had great listening all night. Then, when it was time to go to bed, he was playful and giggly. They had read the "Sally sells seashells by the seashore" poem at school. I think we came up with every rhyme possible, and all the silly sentences he could come up with talking about it. It was so much fun. So, he got to sleep long after bedtime, but I don't know that I have ever felt so connected for such a long period of time. In some ways, I didn't want it to end, even though I knew he had to get some sleep.

Tomorrow is a big day for me and Steve. We're going to the Pittsburgh Autism Expo, and leaving Michael with his uncle. I think I'm going to miss him more than he will miss us. He already has planned out all the fun they're going to have until we get home Saturday night.

I'm really looking forward to hearing David Kirby speak, and just getting away with my husband for a few days. Hopefully, I'll be more educated and much more relaxed when we get back!

See you Sunday!!

Today is the DAY!! Vote for Lend 4 Health!!!!

Today is the day to vote for Lend 4 Health at Idea Blog!!!! This is a wonderful idea, and I would love for it to win, so Tori can expand the program. Please, Please, Please go vote!!! (Consider it practice for next month!!)

Monday, October 20, 2008

Last Dose of Diflucan

We gave Michael his last dose of diflucan today. It will be nice not having to deal with the sticky liquid stuff, but I am so worried that the yeast will come back. He's been such a different child since he's been on the medicine. We have really cut back on the yeast feeders in his diet, but haven't eliminated everything. I guess I'm going to have to keep a close eye on him the next few days/weeks and make sure the OCD, aggression, and other bad stuff doesn't come back.

They only sources of yeast feeders would be about 3 chocolate chips per cookie – the rest is sweetened with agave nectar, a slice or two of apple per day, and a few sips of chocolate DariFree once in a while. He does eat popcorn, which I've heard varying opinions on. Everything else he eats is sugarfree, carb free. It's such a battle to get him to eat new foods, I just can't bring myself to take away the few things he's left with.

But, I guess we'll find out what we need to do next as the next few weeks unfold. Cross your fingers for us?

Sunday, October 19, 2008

The Serenity Prayer, Healing, and Hope

Lord, Grant me the wisdom to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

I cannot change the past. There is absolutely nothing I can do about the fact that Michael was hurt by the vaccines we allowed. I thought I had done all the research, and that I was making the best decision for my child. I still have a lot of guilt that I should have known better. But, that is the past, and I cannot change it. Feeling guilty just diminishes the energy I have for the things I can change.

There are so many things I CAN change: I can help Michael heal; I can help other parents; I can help other children.

There are three things to consider when trying to help your child: Is he getting everything he needs? Do we need to remove things that are hurting him? What damage needs to be repaired?

The getting everything question can be a little complicated. Our children have notoriously fickle appetites, so we can't rely on them to get their nutrition from the food they eat. We have been working with an excellent nutritionist, Kelly Dorfman, for several years now, and she has made a world of difference. Michael gets a ton of supplements every day, literally from A to zinc. Life got a lot easier when he started swallowing capsules. But, even as a toddler, he has always been good about taking his supplements. Somehow, he has always known that the supplements make him feel better.

Removing things that harm is even more difficult. After blood tests, we found out that Michael is IgE allergic to peanut, wheat, and egg. He cannot tolerate eating anything with dairy or soy. So, five foods had to be removed from his diet. We had to go over every food and every supplement, and make sure they didn't contain anything he couldn't have. We missed a few the first go round, but I think we're OK now. It was a major lifestyle change to cook almost everything from scratch, to forget about eating out, and to read every label carefully. But, the results have been well worth it. Now, if Michael gets something he shouldn't, it's fairly obvious, and we can fix the problem.

And, we've gotten a bonus. Now that Michael is no longer eating any of the five foods he can't have, he is much more willing to try new foods. This last week alone he has eaten chocolate DariFree, apples, and steak. He has tried these foods before, but never eaten enough of them for me to consider it an addition to his 'list' of acceptable foods. I'd always heard that children eat more when on the right diet, but never truly believed it. I'm a believer now!

Removing harmful things also means making sure that he's not being exposed to everyday chemicals that can further weaken his system. I was never a 'green' person until I realized the effect the environment has on Michael. We have replaced all our Teflon cookware with stainless steel; I clean with as few chemicals a possible; we limit pesticides to the minimal necessary outside the house (we live at the edge of a huge forest, so some are necessary to keep the critters outside). Every small step is something else to help keep Michael's immune system from further harm.

When it comes to repairing the damage, I'd really suggest working with a DAN! doctor. The biggest gains we've seen this summer came from four prescriptions: methyl B12 nasal spray, lithium cream to help with aggression, flagyl to kill bad gut bacteria, and diflucan to kill candida in the gut. With these four changes (sequentially implemented), we have a whole new child. He's happier, better able to express himself, and much less anxious about life. I can't wait to go back to Dr. Megson to see where we go next!

Helping other parents can be challenging. Every parent I meet wants their child to be as healthy and happy as possible. But, we all hear conflicting information. If the pediatrician you trust and respect tells you there is nothing you can do to heal your child, it's comfortable to believe them. If you see a celebrity on TV claiming their child no longer has autism, you want the same thing for your child. My best advice to other parents is to do the research and talk with other parents.

Many parents see where Michael is today and say "Oh, he's starting out so much better than my child." What they don't realize is where Michael started. When he was first diagnosed, Kennedy Krieger told us he wasn't high functioning and gave us little hope for his future. He had lost almost all the words he had learned, and had almost no understanding of anything that was said to him. He was content to sit by himself and stim all day long. Now, he still has a long way to go, but he has solid functional language, enjoys the company of people he loves, and is doing well academically.

Steve and I talked way at the beginning of our biomed journey and set one rule: we will do everything we can to help heal Michael, but only using methods that are safe. The books I list in my favorite books section detail steps you can take to begin the process. The websites and DAN! conference are another wonderful resource. But, before you begin, set your own rules, and find professionals to help you.

Finally, helping other children. Nothing is sadder than hearing about a parent who desperately wants to heal their child, believes in biomedical interventions, but can't afford to implement them. Please see my post yesterday about Lend 4 Health. When you read the stories of the children there, you can't help but want to make a loan. It's a small thing you can do to affect another child.

Now, about the wisdom to know the difference. I'm still working on that one. I'm an idealist who wants to help my own child and every child I meet. I know some parents are receptive to the concept of biomed, others aren't. When I find someone who isn't receptive, I can't judge them just as I hope they don't judge me. I just hope that as they see Michael's amazing progress, they will reconsider.

Saturday, October 18, 2008

Lend 4 Health

I've been meaning to write a post about Lend 4 Health for a while now, but was waiting to be closer to the IdeaBlob contest. So, I guess now is the time!

I love the basic premise: interest-free micro loans to people struggling to pay for biomedical treatments for their children with autism. You can loan as little as one dollar to help fund a child, or you can fund the whole treatment if you have the money. And, it's not a donation - it's a loan. The recipients will pay the money back over time. You can then take your money, or reinvest it in another child's treatment.

You often hear the phrase "Autism Community", and it's true that there are so many of us affected by autism in one way or another. There are many local support groups for parents. But, it's also true that helping your child with biomedical treatments can be incredibly lonely. There are internet based support groups, but very few people have access to anything local. What does this have to do with Lend 4 Health??

Lend 4 Health is building a biomed community that directly touches children's lives. It lets those of us who have extremely tight budgets help each other's children. It brings us all together to support all children 'doing' biomed, and their families. I love watching Tori's video because our family has made loans to several of the children featured. We feel that we are part of their recovery, in addition to our own son. That's a powerful feeling for families who often feel powerless.

So, please visit Lend 4 Health, look at the children who have been helped, nominate the next child, and just appreciate the community there. Then, please vote in the IdeaBlob contest, so Tori can expand this wonderful, effective program!

Friday, October 17, 2008

Playground Fun

Is it selfish of me to regret the times I'm not able to see Michael doing wonderful things? Michael didn't have school today, so Steve took him to the adventure park to play. For the first time in ages, he played appropriately with the equipment, and explored all around the park.

The last few times we took him to this particular park, all he wanted to do was to play with the mulch. He was only willing to try a few pieces of equipment, very timidly. Today, he was running around, trying everything, and just being a kid. I'm sorry I wasn't there to see it all, but so happy they had such a good time.

I'm not sure where this new confidence is coming from, but it is wonderful to see. He is even getting braver about trying new games on the wii. When we first gave him the Outdoor Challenge game a week or so ago, he was only willing to try two games. He'd go back and forth between them, but get upset at the mere mention of a new game. Last night he tried at least four new games. He even went back to two of them!

Thursday, October 16, 2008

Total Exhaustion and Good Stuff

I can't even begin to express how exhausted I am right now. So, it's going to a quick entry tonight and then off to bed.

Michael has a Christmas book that he likes to read in the living room. He never talks about it, but it's one thing he does to get away from everyone and have some quiet time. I found out that he has been playing with a mish-mash of train toys downstairs, and one of the main characters is Santa driving a train. Apparently, he has quite the story he acts out. So, reading comprehension plus imaginary play equals one very happy mommy.

Other than that, school has been better this week with many more stars and many fewer meltdowns. He's still not eating and drinking enough during the day, but he's starting to make up for it at home. Definitely a good thing!

Wednesday, October 15, 2008

Odds and Ends

Sorry I missed posting yesterday, but life has been a little crazy the last few days. We pick up two new activities this week; I have 2 offsite meetings on days I'm normally home; and juggling the schedule has been crazy. I am so thankful that Steve is totally committed to Michael's recovery, and has a lot of flexibility in his job. Between the two of us, we'll get it all done – somehow.

I'm not quite sure why, but Michael has been a lot more emotional the last week or so. One minute he's playing or working nicely; the next he has a mini meltdown. He seems to recover quickly, but it's odd to see him so fragile. We are at the end of our tube of lithium cream, so I am wondering if maybe the end of the tube is less potent than the beginning. We'll start the new tube tonight and see if it helps. I remember seeing dramatic results when we first started the cream, so I am really hoping our solution is as simple as starting a new tube.

We started the new OT today. Michael was skeptical going in, but warmed up quickly and did well overall. He really wanted to play with all the great toys, but did manage to get a lot of work done. She seemed to really understand what she was seeing with him and has a plan to help with his overall body control, as well as fine motor skills. The downside is that the only time she had available was at 3:00. That means he'll miss music every week, but I think it's worth it. She also has us on a list for a later time. Hopefully, something will open up soon.

Tomorrow is Thursday, and there is nothing on the calendar. Then, there is no school Friday, so we have a three day weekend. After the frantic running around of the last few days, I am really looking forward to a little quiet. Who knows, we might even drag out some paintbrushes and paint some stick figures. No matter what we end up doing, I'm sure it will be fun!

Monday, October 13, 2008

The Good, the Bad, and the Hopeful

Today was a really good day, and a really bad day. After all the good stuff we've been telling you about, I guess we were due for a setback.

First, the good. Today was the open house at Michael's elementary school. So, we got to spend 2 hours in the classroom(s) with him, and see his 'other' life. In the special ed room, he stayed in location pretty well, did what was asked of him, and participated. It was great to see some of his strengths. When it came time to see him in the mainstream room, it was obvious that he doesn't have the self direction to be there full time yet. Where the other kids could go from center to center and do the assigned tasks, he needed constant help focusing. He could read the assignment, answer the questions, and do the tasks. However, if there wasn't an adult with him, he'd be all over the room, getting into everything.

The bad: he had two major meltdowns today - one at school, and one at home. He recovered fairly quickly from the one at school, but the one at home took longer. Since it was so out of character for him, we had to do a little digging to try to figure out what happened. When we opened his lunch box, most of his lunch was untouched, and his water bottle was mostly full. Given that he was hungry and dehydrated, I'm not surprised he had trouble controlling himself. We also found out he had a headache most of the afternoon. So, we're giving him the benefit of the doubt, and trying to work with the school to keep him fed and hydrated.

He was a little nervous at bedtime since he knew he got a bad report from school. It was nice to see that he was actually reassured when we told him that the teachers knew he wasn't feeling well, and that no one was mad at him. We told him that tomorrow is a whole new day, and he can make it a great one. Hopefully, he will!

Sunday, October 12, 2008

Houston, We Have Chocolate!

Today was a pretty ordinary day, with a couple really cool things:

Michael drank chocolate 'milk'!!! This is a child who drinks nothing but water. No juice, no soda, no milk substitutes. He drinks water, and only water. Today, he had gotten chilly after a long bath, and I asked him if he wanted something warm to drink. He actually said yes, so we made up a cup of chocolate Dari Free. I added some cool water so it was warm but not hot. After a few minutes of coaxing, he agreed to try a sip. Then he wanted another sip. Pretty soon the whole glass was on his desk. He actually ended up drinking about half a cup worth. I was shocked. Of course, now I am worrying that it would feed yeast. But, it also provides calories he desperately needs. For now, I'm calling it a huge win!

He made it through a 3 store shopping trip with no meltdowns, no long interludes watching automatic doors, and no major fussing. We had to work around some of his weaknesses, but overall the trip was hugely successful. I'm still in shock that we went out and came back with what we intended to buy.

Otherwise a quiet day, and I appreciate that!

Saturday, October 11, 2008

A wii Victory!

I never thought I'd be so excited over a video game! We've spent a lot of money in the last year on wii games hoping Michael would play them appropriately. Unfortunately, he spends most of his time fussing with the menus, and little time actually playing the game. Today, we introduced him to the Active Life Outdoor Challenge game. He actually played!! He spent well over an hour playing the Whack a Mole and Timber Trail games!!

Now, I know that even with kids on the spectrum, playing video games isn't all that big of a deal. But, if you remember my post a couple days ago, Michael has a LOT of body awareness issues. For him to see the mole, figure out where to stomp, and then stomp the mole before it disappears… it's HUGE!! And, he really likes the game, even though it's challenging for him.

The other game he likes is a timber trail game. You basically run in place and jump over logs that come rolling toward you. Sometimes he finds it more funny to crash into the log than jump over it. But, sometimes he actually wants to get a good score. He's never played a game 'to win' before. So, I'm just extra excited about that.

He's still nervous about new games, and covers his ears a lot at the music. But, I'm still so happy that he found two games to play. There are probably a dozen more that he's afraid to try, but we'll get there!

Friday, October 10, 2008

Friday, Fun and Games

Ever have a nice, quiet evening planned out, and then your child re-writes all yours plans? Normally, when Michael disrupts our plans, it's due to illness, a temper tantrum, overall clinginess, or general poor behavior. Tonight, I was planning on just staying home being quiet, knocking off a chunk of homework, and eating leftovers for dinner.

So, on the way home from school, Michael and I were talking about what he wanted to do when he got home. He's been on a Charlotte's Web kick, so I expected him to want to watch a movie and maybe read some books to the baby doll. He very clearly said, "I've had enough of movies. I NEED my Grandma." So much for my plans. Thankfully, Grandma lives close by and didn't have plans of her own.

So, Grandma came over and Michael has been playing pretty nicely. They read together, did some worksheets, and even played catch with his balance ball. Yes, the ball is as big as he is. Right now, they are swinging on the deck 'helping' Daddy grill some burgers for dinner. And, I get some quiet time to think, write, and reflect on how sometimes a change in plans is a wonderful thing.

Thursday, October 9, 2008

Slow and Steady...

We've been taking Michael to the same chiropractic practice for just about 3 years now. When we first started, we had an unpredictable child with a lot of sensory issues and a doctor who was skeptical that chiropractic could help at all. We were unable to watch the orientation video because Michael couldn't tolerate the sound of the television. Waiting for our turn wasn't too much of a problem because Michael liked to stim on some of the toys. He didn't play with them appropriately, but he was entertained. The initial evaluation showed a tightness on both sides way at the top of Michael's neck. The doctor agreed that it was definitely something we could work on, and we started out with a neck adjustment on each side, twice a week.

As time passed, we dropped down to once a week, every two weeks, and now once a month. We've tried to extend longer between visits, but so far, every four weeks seems just right. The doctor is able to do a few more adjustments, and Michael happily climbs up on the table for his treatment.

It hasn't always been this easy. There have been many, many times where Michael got bored in the waiting room, threw temper tantrums, and/or just didn't want to be there. But, we kept up the chiropractic, along with all the other biomedical interventions we've been doing. For a long time, as soon as we saw any kind of improvement, we had a corresponding decline in behavior. There were times I expected to be asked quietly to come back another day. But, the doctor and the staff have embraced Michael as he is. They've rejoiced with us over every milestone, and gritted their teeth through the worst behavior.

Having a month at a time snapshot really gives the doctor a good idea of Michael's progress. He's seen a slow and steady improvement in his chiropractic symptoms, as well as a decrease in negative behaviors. Through it all, the doctor has always talked to Michael, asked him questions, and treated him with respect. Today, he was shocked when Michael actually answered a question or two. Today was also the first time that he asked for our DAN! doctor's name. I think we've made an impression!

Wednesday, October 8, 2008

A good day all around

Have you ever noticed that when your child has a good day, you have a good day? And when he's having a rough time, your whole day just seems to go downhill? Today was definitely a good day. We kept Michael home from school because he was scheduled to get an updated Auditory Processing and OT evaluation this morning. It was so nice to sleep in those few extra minutes and have an unhurried morning!

My husband took Michael to the exam, and I waited (not so) patiently by phone in case they needed my input for anything. The appt was scheduled for 10:00, and by 12:30 I was getting concerned. But, then the phone rang and I started to get a summary. Michael has made amazing progress in several areas: auditory figure/ground, dichotic listening, and even visual motor integration. It's a lot of technical words, and I'm not sure I understand it all, but one thing really stuck out: he had improved his handwriting by more than two years since the last eval one year ago!

Despite all this wonderful progress, Michael still has a long way to go. I've long suspected that he understands almost everything he hears, but it's so nice to have it confirmed! I've also been concerned that even though he does great with reading, he doesn't seem to understand math concepts as well. Spatial awareness and body control also seem to be weaknesses. We talked with the therapists for quite a while about all this and decided to change our focus from auditory comprehension to body awareness. This will mean a mini loop sometime before the end of the year, and trying to get in with a good OT.

I'm excited and overwhelmed at the same time: it's so nice to hear good news, and exciting to pursue a new path, but overwhelmingly difficult to get there. It's so hard to find an OT near us, and none of them take insurance. So, I'm committing us to even more expenses, paperwork, and scheduling. But, hopefully, the results will be worth it. Then, I look over at Michael, and see a happy kid playing appropriately with toys, and KNOW that he's worth any effort.

Monday, October 6, 2008

Small miracles, Huge Smiles

This weekend we saw a minor miracle at our house: Michael pulled all the books out of his school 'book bag', dragged his baby doll over to a chair, and read every book in the bag to the baby. This is amazing in so many ways – he NEVER reads out loud. Some of the worst battles we ever had were trying to get him to read out loud while doing his 'headphone homework' between Tomatis loops. He doesn't have a lot of pretend play, but he was actually propping the baby up so he could see the book, and asking the baby questions. It was so adorable. Plus, he was reading with inflection, and clearly had favorite stories.

I know that none of this is remarkable for typical kids his age. But for him, and us, it is huge. I was sad to back up the bag of books and send them back to school this morning. But, when I told his teacher what he had done, she assured me there would be another bag coming home soon. Never did I imagine I'd be excited about getting homework!

Sunday, October 5, 2008

Thank you, Congressman Van Hollen

I'm not usually a political person - I'm registered independent, and I vote on issues rather than party lines. But, in the last few months, I've really been drawn into the issue of the vaccine-autism controversy. Like many parents, I watched my son slip away after a series of shots, culminating with the flu shot. I thought I had done my research, that mercury was out of all childhood vaccines. And, I listened to the advice of our pediatrician. Now, I know a lot more and my son hasn't had any shots since his diagnosis.

I was happy to see the announcement on Age of Autism that there would be a Congressional Briefing with updates and new information. I had naively assumed that my representatives would be eager to send staff to the briefing; that they wanted to know all the issues - not just the propaganda put out by big pharma. I sent an email to Congressman Van Hollen and Senators Cardin and Mikulski. The only response I got was a form letter from Senator Cardin saying that he supported the Combating Autism Act. Not quite what I had expected.

I decided that if emails weren't answered, that they would respond better to a phone call. I was pleasantly surprised when my first call, to Congressman Van Hollen's office, was received warmly with assurances that a staffer was already scheduled to attend. I was less impressed when my call to Senator Mikulski's office only responded by saying that a health staffer would 'try' to attend. But, at least I got an answer on my first call. It took me at least 4 calls to Senator Cardin's office before a scheduler finally called me back. She told me that a staffer would attend the briefing.

The day of the briefing I was hopeful that all my elected officials would be represented. When the list of attendees was published, I was disappointed to see that only Congressman Van Hollen had actually been represented at the briefing. Neither Senator had actually sent anyone, despite the phone calls and email.

So, I want to say thank you to Congressman Van Hollen for responding, and for getting both sides of the issue. I'd also like to thank Representative Maloney for hosting the briefing. Finally, I'd challenge Senators Cardin and Mikulski at least read the transcripts of the briefing.