Friday, December 25, 2009

Twas the Night Before Christmas, Autism Style

So I meant to post this last night but ran out of time. This is a repeat, I copied and pasted it from my blog from last December. But, I am going to repost this for those who have not read it. For many of us affected by Autism, many of these things will ring true. So here's to each and every family out there affected by Autism. Wishing you the joys of watching your child experience this Christmas, peace in your heart and the every growing love you experience from parenting your very special kiddo!

Poem by Cindy Waeltermann of Pittsburgh, PA
Twas the night before Christmas
And all through the house
All creatures were stirring
Yes, even the mouse

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

The children were finally
All nestled in bed
When a nightmare of terror
Ran through my own head

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

Our relatives we will see
But they don't understand
The pleasure he gets
From flapping his hands.

"He needs discipline" they'll say
"Just a much needed smack"
"You must learn to parent"
On goes the attack

We'll just smile and nod
Because we know deep inside
The argument is useless
Our anger we will try to hide

We know what it's like
To live with the spectrum
The struggles and triumphs
Achievements, and 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 story !
He didn't cause a scene !

He peed in the potty
Who cares if he's ten
He stopped saying the same thing
Again and again.

Others just don't realize
Just how we learn to cope
How we barely hang on
To the end of our rope.

What they don't see
Is the joy we won't hide
When our child with autism
Make the tiniest stride.

We sometimes look at others
Without the problems we face
With jealousy, and envy
Longing and even distaste

But what they don't know
Nor sometimes do we
Is that a child with autism
Brings simplicity

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

A child with autism
Tries hard every day
That makes us proud
More than words can say

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

So to those who don't get it
Who don't have a clue
Take a walk in my shoes
And I will assure you!

After ten minutes
Into your walk
You'll look at me
With respect, even shock

You will then realize
Daily what is it I go through
The next time you're tempted to judge
I can assure you

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

Tuesday, December 15, 2009

Here's to 2009.....

It is hard to believe that this could be one of the lasts posts for this year. I like to reflect on life during the holidays and appreciate how far we have come and what this past year has brought. This past year we've had the blessing of losing Matthew's school diagnosis and his entrance into a mainstream Kindergarten program with the love of a wonderful teacher. It has been an eventful year for sure. Lots of hard work and our fair share of challenges but I think we've grown as a family in our health, understanding of Autism and our love for each other and our journey on this earth. I have tried to make my blog something that everyone can get something out of, even if you do not have a child with Autism. Although I would never wish for my son to have to face what he has in his short life, I appreciate this journey for what it has given to my family as a whole. Had we not received an Autism diagnosis for our son, we would not have had to learn all we have about the immune system, the process of inflammation which is the underlying issue in just about all disease and the impact our diet has on our health, and so for that I am grateful for this journey.

I have also been blessed with many other Autism moms, dads, families in general as well as the practitioners in this fight against Autism whom I have come to call friends and partners in our family's process of healing our son. Thank you for your shoulder, your wisdom, your companionship in this process, it means the world to me. I look at what we did this year like attending our first parade as a family. Wow, such a small thing for many and yet for a family with a child with Autism this could have been disastrous. This was the first year where I was not concerned he would dart off into the traffic, wander off to be kidnapped, have a meltdown two minutes in, etc. Rather he sat in the front, right along the parade route waving, high fiving and catching the candy thrown (of course mom confiscated all but a candy cane or two!). But incredible progress for a boy who would have had to be carried to the car kicking and screaming years before at such an overwhelming sensory experience.

We've had our share of meltdowns over change, just last week as a matter of fact so I won't mislead you into thinking we are perfect, whatever that is. But, I must appreciate the fact that 3 short years ago my son was not speaking and now he is close to losing speech therapy because of his progress. We have much to be thankful for (as this is my Autism related blog I will not go into the full gamut of our family events for the year but suffice it to say the rest of the fam had a great year and is blossoming as well!). We can operate much like other families and that in itself is something to celebrate. The holidays can be so challenging for children with Autism, so many new things, routines disrupted, school activities, dietary challenges, visitors or taking trips to see others, the list goes on and on. Even for neurotypical children it can be taxing but for a child with Autism, it can be monumental and cause meltdowns and regression. I look at my son and I am so proud of how hard he works each day. The things that come easy to other kids his age take tremendous effort. I still see how hard it is for him to pay attention when his environment is loud or there are too many things going on. I can see his brain working and trying to take it all in and prioritize what needs to be listened to and what ignored (like the air conditioning sounds that used to completely envelope his focus back in preschool). Things that we can ignore as background noise used to become his whole focus. We must appreciate each small step our children make.

This club, Autism, is not one that many of us would choose to be in, but unfortunately our numbers are growing. Until we all wake up and realize our toxic world from food, cleaners, pesticides, over vaccination, etc. makes a huge impact on our bodies, this number will only continue to rise. It is now less than 1 in 100 children will be diagnosed with Autism, more than any other childhood disease. Trust your instincts as a mom, find a practitioner who can help you. Everyone knows by now I support Dr. Kurt Woeller and recommend him to anyone. He has helped my family more than I can ever say and I will always be in his debt. He has also offered me the opportunity to work for him in a small capacity this year which only continues to enrich my own knowledge base of health, Autism treatment, the immune and neurological systems so of course I jumped at that chance! And, find another mom who can help you. Autism is treatable and kids can get better. I am always happy to help other families getting started on a biomedical approach. It helps to have a mentor or a partner who has "been there, done that". Often no one can understand the overwhelming emotions that come from raising a child with Autism like another Autism parent. You are often left frustrated, angry that your child has to go through this, stressed, financially impacted, and grieving for the life you dreamed for your child and the fact that it may not be what you planned for at all, especially in the early years after diagnosis. But, there are many, many bright sides (and yes, it can take a few years to realize that so don't feel bad if you aren't there yet). Watching our children master a skill that seem impossible, hearing those beautiful first words, at ANY AGE, and YES potty training (it will happen, I promise), eating a new food, and the one I NEVER tire of, hearing your child say "I LOVE YOU MOM" without any prompting. Those are the things that keep us going when we don't feel we can and keep us striving to try new things.

So in the new year look for more informational posts through my, I still have much from the DAN! conference to post and have not yet had the time. And, hopefully I will have another endeavor to share with you all, a book which I am co-writing with someone near and dear to me. But, I am going to leave that a mystery until the time comes. But, you will love it, have to have it and it won't just apply to Autism (at least that is our hope!). So from our family to yours, Merry Christmas, Happy New Year and many blessing to you and your family during this holiday season!

Saturday, December 5, 2009

GFCF Gingerbread cookies

So, it is that time of year again, baking time! When my son's kindergarten teacher asked for volunteers to make the Gingerbread Men for their annual hunt for the Gingerbread man I immediately volunteered. I like for him to have what "everyone else is having" as much as possible. I don't like for him to always have his "special" treat. So whenever I can do something gluten, casein and soy free that I know everyone will love, I like to do that. This recipe, in my opinion, tastes just like traditional Gingerbread made from wheat. We used this last year and the kids loved it. This year was no exception, the kindergarteners loved them, so did the teacher and the other parent helper.

¾ cup Ghee
¼ cup molasses
1 cup brown sugar
3 cup gluten-free flour mix*
1 teaspoon xanthan gum
1 teaspoon salt
1 Tablespoon baking powder
2 teaspoon ground ginger
¼ teaspoon ground cloves
½ teaspoon ground cinnamon
1/8 teaspoon ground nutmeg
½ cup water
Rice flour for rolling

Cream margarine and sugar. Beat in molasses. Sift dry ingredients into separate bowl. Stir into creamed mixture alternately with water (I did not need all of the water, I just added until the dough started to pull away from the side in one big clumo). Mix thoroughly once everything has been added. Dough should be soft and will be sticky. Refrigerate dough for at least one hour. Using rice flour, roll portions of dough on parchment paper to about ¼. Cut and decorate as desired. Bake in 350F oven for 8-20 minutes depending on size. Cookies should just be getting browned. Bake longer for crispier cookies. Cool slightly on sheet before removing to rack to cool completely. Store in airtight containers.

* the GFCF mix I used was:

6 cups rice flour
2 cups potato starch
1 cup tapioca starch