Autism As A Whole

I enjoy participating in this blog hop because it helps me get things off my mind. This week, I want to give myself a Throat Punch Thursday!! Weird right?? Let me explain.. When I joined a support group for special needs parents they read an essay that was very touching. It is called Welcome To Holland by Emily Perl Kingsley. It was a great read and it truly describes how I as a mom feel.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Emily Perl Kingsley

The only thing is I haven't come to see the beautiful flowers and windmills. I am not enjoying Holland and it is really hard to talk to the other parents that also live in Holland. Many of them have been living this life for a much longer time and seem so adapted. I feel as if I need to bite my tongue so I don't offend anyone. But.. Haven't they at some point felt similar feelings? Am I being ridiculous? I love my son and I will accept him for who he is but I can't seem to accept that he is deteriorating so quick. I can't accept the equipment that is now in place.
When Chucky Cheese was diagnosed with Autism, I had already accepted him for who he was and it didn't seem to affect me in a huge way. I think it is because I struggled for so long to get the doctors to listen that when they finally did I was relieved. At least there was an answer, it wasn't my parenting skills. I was able to cope and move forward. This time it isn't easy, not even a little bit.

C.C.'s motor skills have regressed drastically. It is heartbreaking to watch all the skills that he tried so much harder to accomplish disappear. He is needing adaptive furniture and strollers, and now he needs AFO's. So you can imagine how stressed an hurt I was when I read this letter. I changed his name to his nickname for privacy issues.

Dear Sirs,
Chucky Cheese is received physical therapy services at Rosendale Elementary School twice per week for 30 minute sessions. Since starting school in September of 2011 he has become noticeably more unsteady with his gait, falling several times and becoming progressively weaker with his routines in the therapy room.  This has been communicated several times to his mother.  I have spoken with his doctor about the lack of progress and the need to add more equipment in his room to accommodate safety concerns. He no longer can sit on the school benches in the lunchroom due to falling backwards; he now is in an adaptive seat with a footrest and a seatbelt.  He has fallen when trying reach for a dropped item from the chair.  He is unable to sit on the carpet in the classroom without support and now needs a Rifton adaptive seat for the carpet and in the classroom.  He is losing range of motion in his legs, his movements are clumsy and he is unable to do most of his exercises without moderate assist.

His mother is presently taking him for testing and he was seen by a Physiatrist in Albany who will be prescribing bilateral ankle foot orthotics for him to ambulate with. He does not tolerate ambulating long distances and often complains of joint pain, weakness and shortness of breath. It is highly recommended that a stroller be used to prevent overuse and damage of the joints when needing to go for extended outings.   He is unable to keep up with his peers at this time and will be having therapy increased to three times per week for the upcoming year.   If you need any more information please do not hesitate to call me at the school.

Thank you for time and effort,
Teresa M. RPT 

The reason this is a Throat Punch Thursday towards myself is because I cannot seem to get past the fact that my son is really physically disabled. There is nothing wrong with that but people are going to look at him now even more than before. Maybe I am willing to take the looks of disgust toward my parenting over the look of pity for my son. I think I can handle the ignorance of others above the pity and questioning looks of bystanders. I just don't want him to look "different" along with acting different.

I was talking to another parent when I was looking into an adaptive chair for C.C. I had told her that,"I didn't want to get him something that looked to "special needsy"." I look back on these words and while they may sound offensive it definitely wasn't intended to offend. What is my problem? I should be able to get my son whatever he needs without thinking about what others will think. I need a good kick to knock me out of this difficult time so I can get back up to fighting for my son and working to make his life as comfortable and enjoyable as it can be.

I guess it doesn't matter if he has an adaptive bike, braces, strollers, special chairs or whatever. If it helps him then it makes it easier for him. It comes down to trying to protect and shield him from ignorance and the world. It can be a cruel place out there but I need to accept the things I cannot change and work to make it as positive of an experience as I can for him. He is always going to have to deal with the issues of the world and I guess my job is to give him the confidence to be able to deal with it. I need to instill strength, courage and acceptance. I have to help him be comfortable in his own skin and whatever equipment he needs. The more comfortable and confident he is, the less he will care about what others think. I can do this and I will.

Things have been really hectic lately and all the schedule changes, vacation days, and school delays have really taken a toll on Mr. Chucky Cheese. His behaviors have been so far from desirable. There has been a lot of screaming and uncontrollable rages. I am at my wits end on how to deal with him sometimes. There are not too many parents that I know personally with issues like mine and so it is really hard to thoroughly get it off my mind. 

Earlier in the week my sister stopped by my house and Charlie was in mid melt. She tried to approach him and he was not responding. It was really hard to try to step back and allow someone to try to help because I knew in my mind that he was beyond calming down. This had to take it's course and likely there would be another one to follow. She really did try though and I found it interesting that her face seemed to bear the same pain that I feel. Watching him so upset and wanting to help him but knowing he needs me to stay away. She was seeing what I see every day. The tears and screaming, face getting splotchy, wanting to rock him , hold him, love him but he won't let you near him. He looks so confused and angry in this state and at times it is very scary. I often find myself wondering what I am going to do when he completely overpowers me. What will I do? What will others do?

Photo courtesy of Brad Fiore

OK... I am not even sure where to start. It was a great week in the beginning. But things quickly slid down the endless mountain that I seem to be re-climbing again and again and again. I know that must sound very familiar but I am so exhausted and drained. The stress in my life feels as if it is pulling my leg as I am trying to climb up and I think if I cannot manage it soon I may fall all the way to the bottom. I need to write this cause I am nearing the end of my rope and right now, I can't seem to attach the nut so I can keep climbing!!!


I guess I should start with the good news and meander my way into the crushing news I received later in the week. Isn't is funny how you always seem to get good news about progress and inevitably bad news about regression follows shortly after? That is how my week went. First, I received Chucky's report card and it wasn't all that bad. I am proud of him as I can see that he is learning. Then his IEP goals came in the mail of which he achieved 2 of 30 goals!! I was so elated. I called a million people (not really cause I only have about 3 people who I call to talk to), to brag about his progress. Most of my bragging happens on facebook and I have such a wonderful family of fellow parents who rejoice in these moments with me. So... Way to go Chucky Cheese cause you have accomplished great things this last three months. I was really high on life, until it happened. The phone rang. The dreadful caller ID that told me the school was calling.


C.C.'s physical therapist was on the other line so I knew something wasn't right. Ever notice how they never call unless something is not right? I wish they would call to tell us an amazing achievement every now and then so we don't dread hearing from them. Don't you agree? Anyways, she started talking about his muscle tone and stiffness which he has always had. That is why the docs said he has hypotonia. She asked about my older son's testing and the fact that he was diagnosed Cri du Chat and why I never had C.C. tested and I told her that I didn't feel it necessary. Not that I am in denial but why test for something that there is no cure for? Why add yet another label to his forms? Ugh... I guess she just doesn't get it cause then the word acceptance came into play.


Acceptance!!! Hmmm.. what to say about this word. Many NT families will not understand the full impact of this word. Many therapist don't see how hurtful it can be and I know acceptance. I live with acceptance and it swallows my being. I accepted the fact that doctor's thought my son would never talk, I accepted the fact that he was autistic, I accepted his Sensory Processing Disorder. I also accepted Buddy and his Tourettes, Aspergers and most recently Cri du Chat. I take care of my boys, spread awareness, advocate for, and research ways to help them. I do accept. I have accepted and will always accept and find more acceptance. My boys are who they are beyond all the labels that appear on paper. They are special and wonderful boys and I can accept that they need extra help, love and patience to allow them to grow.


Then she requested that I bring CC in to be tested. More tests. More words to look up. WOW!! She said that Chucky has muscle atrophy and had regressed since September. He is having difficulties holding his head up and sitting up. He is stimming during group sessions and his arms, back and legs are very tense. He is loosing his range of motion. Can you imagine hearing all of this on the phone? In a sense I am glad she couldn't see me cause I think my face distorted into so many emotions all at the same time. The next step was looking up muscle atrophy....




So I did, after I frantically called his pediatrician and developmental pediatrician setting an appointment to have the bloodwork done and discuss his issues. The outcome sucked and I read way too much. I read about the causes of muscle atrophy and it included cancer, aids, malnutrition. Ugh.. Stop reading! So, it has been a really tough week again and I wonder when the light at the end of the tunnel is even going to be visible again. Whew.. thanks, I needed to rant so there you have it. Now I am going to go blow my nose, wipe and wash my face, and move forward on my journey. That includes getting tested myself so... genetic testing here we come and regardless of the outcome I will always accept my children and their diagnosis's. So I will find a place to attach the Nut and continue climbing up the mountain and with my determination I will not stop till I reach the top.

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

A 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.