Autism Night Before Christmas

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.......

Back to square one

On my way back to Germany i had plenty of time to read this new book i got "Hope for the autism spectrum" by Sally Kirk. Its about their journey on the spectrum, biomedical interventions and diets. So i read about all the stuff i already know but also find a lot of new things and helpful guidance with probiodics.

After finishing the book i couldn't help but wonder if we are on the right path. We stopped SCD a couple months ago and went back to "only" GF/CF. In the beginning all was good, Nicky was happy to got his cereals and rice milk back. But a couple weeks ago the problems started again. Constipation, twice in a week and on top of it: Eczema on arms and legs. Big ones. So seeing all this going on and still facing the yeast issue, we obviously don't can get rid of it, i think we are better on with SCD. On top of that i want to try the rotation diet and acid-alkaline diet. The rotation diet regulates how often a food is eaten. The low acid-alkaline diet avoids food that are high in acids, like oranges, tomatoes etc. I know it all sound like this poor kid will not get anything to eat, but we did the GF/CF/SCD and all was good. He was happy and he didn't had any poop problem. I don't wanna use enema any longer, he hates it, and who doesn't.

I also have to switch with probiodics. We give him SBoullardii now twice a day for the last 3 months after doing a round of Nystatin. He does good on it, but i know i have to rotate probiodics. Today i started with SCDophollus and want to build it up. Let's see how that goes.

I also want to contact a local homeopathic practicioner, who also has a son with autism. I want to go the natural way as much as possible with Nicky.

It's good to be back!

Welcome to wonderland

So we decided mom needs a little break and can open her Christmas present even before Christmas eve: A flight to the US to visit our friends and do a little Christmas shopping. And so i arrived with little flipper in tow on Wednesday. Writing this at 4 o'clock in the morning means that we are still suffering jet-lag. But life could be worse. Yesterday i spend with my best friend Jen doing shopping at Target, Homegoods and TJ Maxx. Having a lunch at Panera bread and walking through the isles of Shaws supermarket felt like wonderland for me. Oh how i miss them all and this country. Its so much fun, but dangerous, with all the deals in the stores and the Christmas decorations all over the houses. A few impressions, maybe not everybody understands:

• "Here comes Santa Claus, here comes Santa Claus, right down Santa Claus lane..." is one of my favourite Christmas songs, i even had it on my cell last year as a ring tone :O) .
• Spiced apple cider, yummy, no more to say..
• Little candle lights in every window, just beautiful
• Rockefeller Plaza and its huge christmastree, what a show, 30.000 lights
• Salvation army man standing in front of the grocery store with its bell asking for money for the hungry and poor, our Philip just has to put something in, i love that kids learn here early that giving is sometimes better then getting
• Reindeer nose and antlers on cars, just a classic :o)

I could go on and on, its beautiful. I am so happy to be here, it refills my batteries after an exhausting year. I am glad Wolfgang and Nicky are doing fine in Germany, only that can make me relax, knowing my family is o.k. I know for sure that our Flipper is SO o.k. right now, having an all day play date with his friends Kate and Livie here.

Well, i gotta go, i am seeing so many friends today i miss so dearly. It's going to be an exciting day. Happy Saint Nikolaus day!

A happy day - for mom

Happy days are rare for us right now. Everything seems to be so hard and i often feel somebody is putting some big rocks always in our path. I feel not treated right, unfair. Things with school are hard. The fact that services here in Germany just suck (excuse me!). You have to have a prescription for every therapist and have to fight with Health insurance and doctors who is going to cover. On top you need of course stuff for your kid (like diapers, a special car seat and communication devices in our case), you want some funding to get some income relieve, because one of us will always be a care giver or you have to hire somebody for that. So life was hard on us, since we moved in, and very often you feel you can not go forward any longer. And then comes a day like today: I found out that we get

• this special car seat for Nicky, so he is finally safe
• the communication devices we waited for for so long

We also found somebody who is making its masters in special ed. and especially in TEACCH. Nicky will be her child she will study in this. That gives US the opportunity, to learn more about TEACCH, which is the learning method in Nicky's school.

She also will probably watch Nicky for a week, while i am gone with Philip to see all our friends back in the US.

And i started the day on a beautiful horse, riding through this peaceful landscape and feeling just free. The biggest luck of the world you find on the back of a horse a german saying is. It's so true, this is my therapy, who needs a shrink when the horse is the better therapist for you.

Happy "special-mothers-day" to me !

November 9th - what a date in german history

While i was watching the news yesterday it hit me that two mayor milestones in German history happened on the same day. The "Reichskristallnacht" or the Night of Broken Glass happened November 9Th-10Th in the year 1938. At that night over 200 synagogues burned and Jewish businesses and homes where destroyed. In this single night 30.000 Jews where arrested and deported to concentration camps. From this night on Jewish people had to wear the star on there clothes. This was by far the darkest night in Germany's long history. And even its been 70 years since then, people in this country know the details and they live on with that thoughts and just know how horrible this part of German history is.

On the exact day just 19 years ago, Germany had the happy day where the wall in Berlin fell. People danced on the wall, they hugged each other after being separated since 1961. When the East German government announced on November 9, 1989, after several weeks of civil unrest, that all GDR citizens could visit West Germany and West Berlin, crowds of East Germans climbed onto and crossed the wall, joined by West Germans on the other side in a celebratory atmosphere. Over the next few weeks, parts of the wall were chipped away by a euphoric public and by souvenir hunters. The fall of the Berlin Wall paved the way for German reunification, which was formally concluded on October 3, 1990.

A little help from Mr. Flipper

Enjoy!

Just autism

This is a very sad post, but i feel to share it with you. I went to a parents-meeting from Nicky's classroom yesterday evening. It was a nice evening talking to this parents and learning about their kids and the problems they face everyday. I found out, there are two kids in the classroom with a disorder called Neuronal Ceroid Lipofuscinoses (NCL).
Late Infantile NCL begins between ages 2 and 4. The typical early signs are loss of muscle coordination and seizures along with progressive mental deterioration, though afflicted children may show mild-severe delays in speech development well before other symptoms appear. This form progresses rapidly and ends in death between ages 8 and 12....
On my way home i just thought, what they must go trough every day, just seeing the child slip away more and more.
You ask yourself why? ...and then you go home, hug your (just) autistic boy in his sweet dreams and cry.....