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Tag Archives: autism

The Reward for Hard Work

If you’ve read my blog for a while, you know that Moose has autism. Five years ago, when he started school in the early childhood special education program, he couldn’t talk. At all. Even four years ago, he was still primarily non-verbal, and we wondered if he’d ever begin speaking. Slowly, he did, and we’ve reached the point where we have to (gladly) tell him to stop talking on a regular basis.

Today, I got a letter from the school informing me that he is the alternate representative for his grade in the district-wide spelling bee. My son. The child who couldn’t talk to us for the longest time, whose intelligence couldn’t even be accurately measured when he started school, because he wouldn’t speak or make eye contact, is speaking well enough to be understood, and is proving how smart he is daily.

He has worked so hard since he began school almost five years ago. And his teachers and therapists have worked so hard to teach him and encourage him and bring out the best in him.

This is a reward I couldn’t have even imagined in his future five years ago. Now, however, I know that I can expect anything and everything from him, because he is willing to work to do his best!

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Autism Isn’t Fair

I spent some time today outlining the ways autism can be a blessing in disguise. And I mean it. But, autism can also be extremely unfair, and I don’t want to pretend that those thing don’t exist.

It’s not fair the way people respond when they see a child with autism having a meltdown. It’s so easy, when you’re not in the trenches, to assume that said child is spoiled, or undisciplined, or simply a brat. It’s not fair that people stare, and say condescending things like, “Someone obviously needs a nap!” No, “someone” doesn’t. Maybe you do, though. “Someone” is overstimulated, or overwhelmed, or out of his comfort zone. Try to extend a little grace, and lessen up on the judgement, especially since it’s a situation about which you obviously know nothing!

It’s not fair the way parents, especially mothers, are blamed for their child having autism. Maybe if you hadn’t eaten that when you were pregnant… Maybe if you had been more loving… Maybe if you had never let him watch TV… Maybe if you hadn’t let him have those vaccinations… It’s not helpful. And none of those things have ever actually been proven. Again, less judgement and blaming, unless you want the stare of death from a tire, frustrated, overwhelmed mother.

It’s not fair that children with autism don’t quite “get it” socially, whether by their own choice (the loners), or because they’re excluded by their peers because of their difficulties. It’s not fair to see them by themselves on the playground, to know that they ate lunch alone, to see their struggles with making connections and friends.

It’s not fair that my child has to have a different education than his siblings do. This could be a public school vs. homseschool issue, as is the case in our family, or a private school vs. public school issue, or a specialized/residential school vs. public school issue. However it plays out, it’s not fair that not all children in a family can go to school together, because one of them requires special services/teachers/opportunities that are not available at the school that the majority attends.

It’s not fair to have a sibling with autism. No matter how much you love your autistic brother or sister, it can be a challenge to learn how to interact and play with him or her. Why does he get so upset when the littlest thing changes? Why does he get more attention? Why won’t he talk to me or play with me? It’s not easy to grow up next to somebody with so many idiosyncrasies.

It’s not fair to the person with autism, either. Probably most of all. Why should he be the one to be different? Why should he be the one to struggle to speak, to express himself, to engage others, to fit it. It’s not fair to realize that you’re the different one; that there’s something “wrong” with you. To know that everybody else is doing something different from you.

Autism isn’t fair. But, as the old saying goes, “life isn’t fair.” Sometimes it sucks, but it’s something a person, a family, a society, must learn to live with. Autism is on the rise, and until we figure out why, and how to prevent it, we must learn to look past “fair,” and learn how to deal with the struggles of everyday life.

Autism as a Blessing?

I mentioned earlier today, that in some ways, Moose’s autism has been a blessing. It has taught us to celebrate things that otherwise might seem insignificant, to not take anything for granted. We have also experienced the tremendous joy that comes from seeing your child go from a four-year-old with almost no verbal ability to a seven-year-old who can have conversations, tell jokes, and let you know when he’s sick or hurt,  just like any other child can.

Today, I had his annual review at the school (the irony of the timing is not lost on me!). After, I was talking to his occupational therapist. She has worked with him since day one at the school, when he was barely three years old. As a matter of fact, she is the last person that is still working with him that has been with him from the start. Next year, she’ll see him very infrequently, because he’s come so far, he really doesn’t need OT anymore. She’ll basically just be a consultant to the teacher, and an extra pair of eyes to check in on how he’s doing periodically.

I’ve long known that he’s a favorite student of hers…who could blame her? Moose is, after all, very sweet and funny and charming. But she told me today, with tears in her eyes, that Moose will always be the one student who makes her years as a therapist worth it, because of how far he’s come, and how much he’s achieved.

I realized at that moment, that Moose’s autism has been, in a weird way, a blessing to her, as well. Without it, she wouldn’t have had that career-defining experience, at least not with him; probably not at this time; maybe not at all. It’s strange to think that something we tend to see as a challenge at best, and a full disability at worst, could be a blessing in disguise to a variety of people.

I sometimes wonder how I would feel if they created a pill to “cure” autism. The easy answer is to grab it and run. Get rid of this invisible disability as fast as possible.

I’m not so sure I could do it, though. Part of who Moose is involves him having autism. I’m not sure who he’d be without it. Of course, no parent wants their child to suffer, but he’s not suffering as far as I can tell. And if him not having autism would take away from his sweet, loving personality, then I don’t think I’d want a cure. Autism doesn’t define Moose, but it is a part of who he is, and I love him just the way he is. I guess after all of these years of joys, triumphs, and, yes, struggles, I don’t want him to be any different!

A Crash Course on Autism

In honor of World Autism Awareness Day, here are a few things autism is NOT:

  • Autism is NOT the result of poor parenting.
  • Autism is NOT caused by “refrigerator mothers.” Sadly, there are still people, even in the mental health world, that continue to believe that this is true.
  • Autism is NOT caused by a lack of discipline…a good spanking will not “cure” my child of autism.
  • Autism is NOT caused by watching TV.
  • Autism is NOT contagious, so you don’t have to hurry away when you see an autistic child having a meltdown…your kid can’t catch it.
  • Autism is NOT a punishment from God…quite the contrary. At times, it can be a great blessing, because it helps you learn to appreciate even the smallest achievements as great successes!
  • Autism is NOT your fault.

Autism Is Not a Parenting Fail

For those who struggle with the doubt and guilt that can come with having a child with autism:

That is the landscape of parenting an autistic child, a child who is misunderstood, mislabeled and mistreated. When society doesn’t understand the reasons behind behavior, it’s the child’s fault. And it’s the parent’s fault. We get used to people not believing our experience, finding little help and feeling like we have failed our child.

That landscape needs to change.

It is not parents who are failing. We didn’t create the model of autism that says they are Not Normal and must learn to be Normal. We didn’t create a developmental timeline that doesn’t allow for variations for those children that just need more time. We didn’t look at the outside behavior and ignore the inside neurology.

via Brenda Rothman: Autism Is Not a Parenting Fail.

Autism Night Before Christmas

I posted this last year, but it’s worth sharing again:

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…….

Autism Night Before Christmas

Although I don’t normally share stuff like this, I’ll hop on my autism soapbox for a moment to share this poem by Cindy Waeltermann. Thankfully, Moose’s struggles are not as extreme as those depicted in this poem, but I still understand exactly what she’s talking about. We’re so very proud of every last one of Moose’s accomplishments, no matter how small, and we just hope that others will be compassionate when they see him doing something that they don’t understand or approve of.

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…….

A Ding in the Universe 

Maybe it’s just because I’m pregnant and emotional, but this blog post made me cry. A lot. Because the author of A Diary of a Mom captured perfectly how the parents of an autistic child feel when something, anything, is able to reach that child, to help him or her, to make his or her life easier, more “normal.”

We’ve seen first-hand the possibilities the iPad has for children with autism, and if that had been the only contribution Steve Jobs had made to our world, (it wasn’t, for what it’s worth…we’re iEverything here), it would have been more than enough.

If you want to read her beautiful, honest, pre-iPad love letter, please click through to keep reading.

“The world lost a great visionary last night.

.

And the autism community lost a hero.

.

I heard one of the talking heads on television last night say, ‘Well, in some ways he wasn’t the best CEO. He wasn’t really so good at interacting with people.’ I couldn’t help it; I laughed. Firstly, of course, because I live in Autismland – a place in which not being ‘so good at interacting with people’ is kinda the norm.

.

But secondly, I laughed because the idea is pretty preposterous, isn’t it? That Steve Jobs wasn’t so good at interacting with people? Really?

.

How many people do we typically interact with in a day? A month? A year? A lifetime?

.

Steve Jobs interacted in some way with Every. Last. One. Of. Us. And in so doing, he changed the face of … well, everything. But that’s just the beginning. What his tools did, do and will continue to do for people with autism? Language, connection, escape, freedom, access. I don’t know where to begin.

.

I wrote the following in January of 2010. I called it ‘An Unlikely Love Letter’. It was addressed to the man who gave my family freedom. If I’d written it more recently, it would have included a whole additional universe of education, interaction, communication, independence and ACCESS for individuals with autism – the iPad.

.

Steve once said, ‘I want to put a ding in the universe.’ I hope as he closed his eyes last night, he left us knowing that he did. He sure as hell did.”

via a ding in the universe  « a diary of a mom.

Light It Up Blue

Although I do share Moose’s story here, I’m not one for campaigning for autism awareness, or supporting organizations that do. However, today is World Autism Awareness Day, so I thought I’d pass the word. If you want to wear blue today, in support of Moose and other children, (and their families), like him, feel free. And if you happen to see a house or building, (especially in a major metro area), lit up in blue lights, well that’s why.

The Annual Review

On Tuesday, I met with Moose’s teachers and therapists (and the school psychologist), to review his progress of the last year, and set goals for him for next year (Kindergarten!).

This is the third annual review I’ve attended for him, plus the meeting where we set goals for him before he even started school, when he wasn’t yet three. While I’m thrilled with the progress he’s made, for some reason, these meetings always make me nervous. At first, I couldn’t even identify why I had a knot in my stomach all day, and then it hit me–I was worrying over his review. Worried about what they’d have to say about his progress and behavior (which is ridiculous, because it’s always all good), worried about what the goals would look like for the next year, worried at just the thought of him starting Kindergarten.

I really didn’t need to worry. The reviews of his progress were excellent. He’s meeting most of his goals at least 75% of the time, and many of them 90-100%. Everyone who has worked with him commented not only on his achievements and perseverance, but on his attitude–what a funny, sweet little boy he is. His teacher even got a little teary-eyed at one point talking about him, which almost got me started, but also made me feel really good. The goals for next year, while daunting when written out on paper, are not outside the realm of his capability. Even talking about Kindergarten wasn’t terrible, although I did cry a bit at home over the thought of him being in school full days next year.

I’m going to be dealing with these meetings every year, and I’m sure that I’ll always feel some apprehension beforehand, but with every good meeting that I have, I’m hoping that anxiety for the next one diminishes a bit!

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