Beach Day by Rachel

We are in FL visiting my sister and went to the beach yesterday. A little boy befriended J and they played together so nicely! They shared a snack, played in the ocean and played in a big hole in the sand. It is so nice to see J in that situation.

A Walk in My Shoes

by: C. Waeltermann, 2007

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.

Thankful by Rachel

I just got back from taking J to Occupational Therapy. I saw two boys who were using walkers, visibly disabled and hard of hearing . As hard as our situation is with J there are always people worse off (I hate to say that those children are worse off b/c I have no idea what their situation is). But at first glance, we don't have to deal with wheelchairs/walkers, oxygen tanks or not being to speak or hear.

I have to remember to savor the little things. I can see J smile when he is happy and cry when he is sad. He can run, jump and sing. He loves to give JL and I hugs and kisses. He pretends I am Princess Mommy and he is Prince Charming and kisses me to wake up! He is our sweet boy.

I heard these mothers talking about going holiday shopping while pushing a wheelchair and their shopping carts at the sametime. Can you imagine? They were laughing about it but I am sure somedays they are not laughing.

Tonight, I feel thankful for my family, our health and happiness.

Update on CJ6 and TR2- by Sue

CJ6 is doing very well! Between the sucraid, ultrase 18, Pentasa, and gastrocrome his gut is feeling much better! With this medical situation being remedied, he is much more receptive to learning. We have also seen huge expressive language bursts and CJ6 is actually coming up with his own sponanteous novel sentences rather than echolalia. Feeding therapy is also going well. He is eating shrimp, flounder, carrots, pears, broccoli, spinach, blueberries,etc.. All the foods are SCD legal.
Last week, we sprinted up to Boston for a 5 hour visit with a mito doctor at Tufts. The doctor does not feel that CJ6 has a primary mito disorder. Although I am happy to hear this, I still plan to go out to Cleveland because I always like to have a couple of opinions. I don't put much faith in the Boston doctor's opinion because although he is a mito doc, he does not see a lot of autism patients. A lot of doctors view the mitochondrial inefficiency as a secondary mito issue associated with autism. It might be that it is related to malaborption of coenzymes (vitamins) that are essential to the transport of electrons. In Charlie's case, it might be that lead is bound to one of proteins along Complex 1 (of the electron transport chain). It seems that the concept of mito PDD-NOS is very contraversial amoungst the top mito doctors. Basically, we are using this doctor to do some more bloodwork before we go out to Cleveland in June.

I acutally have to switch my attention to the other son, TR2. Within the last serval weeks, his amino acids came back extremely low , despite having been an an elemental formula for the last 19 months. Our doctor said "we see this frequently with children on the spectrum." What? TR2 is not on the spectrum as of yet!!!! He has great eye contact and joint attention. His organic acids also came back suggesting ketosis. These tests suggest malabsorption, but why and what do we do about this? He is already on Pentasa. Perhaps he is not getting it out of the bottle or it is not being activated because his gut is too basic.
TR2 has been requesting chicken all the time, even waking up at 4 am and screaming for it. It is ridiculous that he is requesting it all the time. He is also very cranky and whiny. This could be because he is deficient in many amino acids and knows that chicken is a good source of protein. It can't feel good to be going through ketosis. Then, another thought occurred to me......perhaps he does have eosinophilic esophagitis, a diagnosis that we have not totally ruled out. Then, the probable malabsorption might be related to inflammation from eating complex proteins, such as the chicken and broccoli that we reintroduced back in October. I need to go back up to Boston and see Dr Buie again. Perhaps it is related to a lack of l- glutamine or a vitamin A deficiency. I am going to take Timmy for a bloodwork tomorrow to check his vit a and d levels. After the blood draw, I will start doing Cod Liver Oil on a more religious basis. Thank God that he is not allergic to codfish!!! On another note, TR2 had a totally white poop yesterday and I know that is not good!!!!

I hate worrying about the boys and having to switch from one child to the next. I never seem to get a break from the sense of panick. It just seems to oscillate between the 2 boys.

Autism in the Media - by Sue

I was watching Good Morning America on Sat morning, and they were doing a section about holiday messages. All words were written on flashcards and then flipped over. There was music playing in the background. Some messages were about soldiers in Irag and some were from children with cancer, etc... The very last portion had a little boy that flipped up his card. It read "Autism is Treatable". Then, he flipped over the card, and it read "I am proof!" I burst into tears, because it was the first time that the news media was acknowledging that there is hope. Maybe we are entering a new age for autism.

Life is BUSY!!! by Kirsten

First off, I am sorry I have not written in forever! Things have been crazy both on and off of the ASD front. I work 4 days a week in a pretty stressful job & this is my busy time of year. In fact, it is 10:30 on a Friday night & I JUST decided to call it quits for the night. I have been working now since 8am. I was working at home tonight, but it was still exhausting!

Things have been going well with JC this week (knock on wood!). Since you just never know, I will take it when I get it. A big issue for JC is constipation & it really effects his mood and behaviors. This week, the poops have been happening almost daily (AMAZING!!!!), so things are good:) I ordered this nasty stuff called Fruit-Eze online. I do believe that it is used in nursing homes for old people with constipation. Whatever works...I will try it! We have been giving J some *tasty* peanut butter and fruit-eze (basically a prune spread) sandwiches everyday. YUM! He's been in a great mood, so life is good.

Last week was a different story. He wasn't pooping & he had gotten a cold. That is the ASD kiss of death for us. Just like Rachel wrote, colds = regression for us here. It totally SUCKS when that happens. I feel like I lose him & I hate it. Thankfully, he comes back to me when he feels better. But it is really scary and sad to see some of his forgotten ASD symptoms return when he gets sick.

I can't wait to see the 3 of you & your husbands tomorrow night! Jen is having a party & we will all be there:-) WITHOUT the kids...even better:):):)

Colds suck by Rachel

J has been fighting this cough/cold thing for a month now. I brought him to his Ped. twice and he was given amoxicillan for a sinus infection. We are done with the dose but he still has this hacking smokers cough. It keeps him up at night and in turn keeps JL and I up. I wonder if it is a new cold that he caught on the tailend of his sinus infection or was it not an infection at all? I guess I will have to bring him back to his ped. this week which stinks b/c he will either have to miss school or therapies to do this.

Also, with sicknesses comes regression. I notice with J that has had more tantrums then ever this last month, gets frustrated much more easily and perseverates (repeating) things more then ever. It is so upsetting to watch b/c I am always so afraid that it's not just the cold but a permanent setback. These regressions aren't all the time in fact, today is a good day, but you just never know. I know he is tired and doesn't feel well but it is hard to watch the regressions with the constant fear he is getting worse not better.

Anyway, I hope he feels better before the holiday festivities begin. Since we all know how busy this time of year is for everyone.

Happy Holidays!