Are You Aware? XIV

Looking for an organization where you can find all sorts of viewpoints about autism and autism awareness? Find yourself in need of service, support, and advice about local autism issues? Want to connect with families dealing with autism? A good place to check out is the Autism Society of America. In the local chapters here, you have the gambit of attitudes, theories, and methods under one roof, so you can get a really good idea of the spectrum of not just ASD, but of how families feel about ASD, cope with ASD, and form communities for their loved ones with ASD. There are even a few folks with ASD who participate, with a whole spectrum of views of their own lives and experiences. You'll get the gambit from "pure acceptance" to "curebie" here, just be aware this is a very catch-all organization. Your local chapter may be not as cosmopolitan in nature.

Are You Aware? XIII

If you want to know more about autism and autistic people, you need to talked to autistic people, and look into organizations run for and by autistic people. What kinds of supports and services are needed to accommodate autistic people to live in a society designed for non-autistic people? Check out the Autism Acceptance Project to get an idea! Because after all, autistic people are here, and they need the support to function here and now.

Wordless Wednesday: Zoo Day

Rainy Day Passtimes

So, what do you do with two excited boys on spring break when it rains? Dye eggs!

Are You Aware? XII

A common part of ASD is sensory integration issues. You can also have Sensory Processing Disorder (SPD) or Sensory Integration Dysfunction (SID) without being autistic. Most people have sensory issues, but they usually don't get in your way. They just make people like and dislike things. If the noise hurts so that you can't function, if the flicker of lights drives you mad, or wearing clothes is just too painful to bear, you might be in the realm of SPD. Check out the SPD Foundation!

SPD is not accepted as a problem by everyone. We struggle with explaining SPD to our school OT. SPD kids are often labeled misbehavers and trouble makers, so it is important that this get recognized and understood, and these kids get the accommodations they need to function. It's amazing with an incandescent light bulb and a seat cushion can do for an SPD child.

Hopping Down the Joey Trail

Another lovely Easter. We've had a couple of really good days here. I hope it lasts.

The boys did get to go out and find all those pesky eggs the Easter Bunny was so not-nice about scattering all around instead of leaving them in the basket. The boys cleaned up the yard nicely, finding all those chocolates and jelly beans in bright plastic containers. Andy was delighted that some of them were dinosaur-shaped.

Then the boys headed for the porch, where their Easter Baskets awaited with more chocolate (well, not so much for Andy, who doesn't really like chocolate), more jelly beans, peeps, and toys. Andy was very excited about the jelly beans and the peeps, and the stuffed duck (which he had picked out himself the other day). Joey liked his blue car and his blue peeps and his chocolate rabbit.

Andy had a great time exploring the baskets and showing us all his new treasures. I got them pads with tic-tac-toe, very exciting, and these hands that point on a stick, teachers use them in classrooms. The boys think they are fabulous.

Finding cellophane to wrap the baskets has become increasingly difficult. That's actually last year's cellophane, the baskets never got unwrapped. I just stuck the new stuff in the same way you reach in to get it out. Next time I see rolls of cellophane, I'm stocking up. Don't other people wrap Easter baskets in cellophane anymore? The magic effect is well worth the $2 for the roll, trust me. An Easter basket without cellophane is like a Christmas present without paper.

Remember that chocolate rabbit in Joey's basket? It didn't live long. Joey loves chocolate. When it comes to candy, he and Andy are like Jack Sprat and his wife. ANdy doesn't care for chocolate, Joey doesn't care for lollipops or jelly beans, together they eat the whole store.

I love the way Joey seems to contemplate sweets and food. Its a very careful, conscious process of relishing it.

This is the way Easter really ought to be. The pure enjoyment of a Peep.

Are You Aware? XI

Fairly early on after we started putting together our first IEP and trawling the internet for information and resources, I stumbled upon what I think is one of the best essays ever written. I use it a lot to explain to people, especially friends with kids, why my life is so much different from theirs- and yet isn't, really. Especially early on, before the wheat separated from the chaff of my life's accumulation of relationships, these words let people at least try to get a grip on what I was going through, and why I had come out on the other end not bitter, not sad, and not in need of sympathy or pity, but support- like any other parent. Just different.

The essay is called Welcome to Holland. I recommend to anyone who finds that life doesn't always go as planned- but that's OK.

I know there are some folks who really hate this essay, but I find that they usually misinterpret it. This is not an essay about being autistic or having Down Syndrome. It is an essay about finding yourself someplace other than you planned to be, and rolling with that. It is about learning to accept life and your children the way the are, instead of the way you thought they were supposed to be. And folks, there are lots of folks- including parents of autistic, Down Syndrome, or myriad other disabled (and abled) kids who really could use some reminders about acceptance, rolling with what life gives you, and enjoying the ride.

Overheard on Easter Morning

When Grandma called, she told Joey about the eggs the Easter bunny left all over the yard for them.
"He took them out of the basket?" Joey asked.
"Yes, he hid them all over the yard!"
"That wasn't very nice."

Are You Aware? X

If you are in search of services for both children and adults with disabilities, it can be a great idea to check out your local chapter of Easter Seals. They now have a specific section just for autism services.

Please be aware that Easter Seals works with the Autism Society of America.

Are You Aware? IX

One of the things we are working hard on here is moving Joey into inclusion settings. That means slowly moving him out o the more protecting settings of self-contained special education- where all the children have IEPs- and into the general population. One of the bigger hurdles is the parents of non-disabled peers. there is a general belief that their kids are better than my kid, because their kid isn't disabled- as if the benefits of inclusion go only one way. Joey's strengths and talents be damned.

Today I bring you a video about inclusion and the attitude of being inclusive. If you've ever wondered about the benefits of inclusion for your non-disabled peer- remember the attitude of acceptance that it implies. Your kid may need to be thinking about it when they hit those hard middle school and high school years.

Bring It On! Birthday Celebrations!

Happy Birthday to my little Buddha Buddy!!!

We took the boys out to dinner, just for fun. Joey of course got Mac and Cheese. I also took one of his presents with us, a huge box of crayons! He really liked getting something at the restaurant. Having it be a huge box of crayons was extra bonus. The boys had a really good time, and did a good job staying in their chairs and eating their food. I was very proud of them!

Then it was time to go home and open more presents! Mrs. H sent this awesome Wubsy toy for the bath, and Joey ran right up at bedtime to take his bath and try it out. When you put soap on it, and squeeze it, it makes suds. (It works.) He was also very pleased to get his own clock for his room (part of the stay-in-bed campaign, but he hasn't really figured that out yet), a bubble machine, a ball-dart game, and an electric Uno game.

What was super-cool was that he figured out:
1. he was getting presents
2. they were for him
3. he actually liked opening them, and did it with some speed.

He would open one, look at it for a minute, ask for batteries to be added when appropriate, and then moved on to the next gift. It was incredible. He really wanted to fixate on the clock, but his hands went out and picked up the next package and got going. This is an amazing advancement over Christmas, when he opened one package, saw it was the car he wanted, and for him, Christmas was done. The rest were just chores, requiring the entire day to plow through, more or less.

Then we had cake! Another amazing feat- Joey blew out all the candles, all by himself! Yes, it took three puffs. Who cares? He was excited, he was happy, he blew hem out without any help from Mommy or Daddy. Totally, totally awesome. My baby is getting all growed up!

Joey put on a whistling concert while I cut the cake (that's right- the child whistles... without his front teeth. No, I haven't a clue how he does it. He's just proud and pleased as punch to be doing it.) Then we all had the cake he asked for- one with sprinkles inside and outside, and chocolate frosting. Yum! (We took the blueberry muffin-cupcakes with blue frosting in to school, they were yummy, too.)

Happy birthday, little buddy! May there be many, many more!

HAPPY BIRTHDAY JOEY!!!!

I let the boys pick their birthday theme. For past couple of years, things have been pretty predictable. Andy wants dinosaurs. Joey likes Cars. So this year when I asked brightly, "Joey, what do you want for your birthday?" I was a little broadsided by the answer:

Pinky Dinky Doo.

In case you were wondering, Pinky Dinky Doo is not widely merchandized. You can't just run out to the party store and pick up some Pinky Dinky Doo plates and paper and call it a day.So we've been working on this for a few days, and finally came up with a plan. I printed out coloring sheets, colored them, and stuck them onto a plain white paper tablecloth. I've also put up some sheets as decor. I might do more if I have some energy tomorrow; I'd like to stick up some birthday Fluffy Buns and that sort of thing. Grandma is working on the cake, I can hardly wait to see it!

Happy Birthday, Joey. We love you.

Are you Aware? VIII

Navigating the world of special education can be a real challenge. Often we discover we not only need to be teachers, therapists, ad doctors, now we also need to be lawyers, just to protect the rights our children have under law. The shocking ignorance of the law in school administrators and other folks who are supposed to be providing services to our kids creates an atmosphere of stress for all concerned. (We won't even discuss the school personnel who seem to be deliberately attempting to circumvent the law). Folks who don't have to fight for every facet of their child's education and well-being have little idea of what special needs families go through just to get their children basic education!

We can't control administrators. All we can do is educate ourselves, and do our best to be positive, effective advocates for our children. KNow your rights, know the rights of your kids. For a great place to start, check out Wrightslaw.

Wordless Wednesday: The Blue Bunny Claims Another Victim

Are You Aware? VII

In the new campaign to "end the R-word" I've gotten a lot of comments to the effect of "Joey isn't retarded, what do you care?"

Just for a moment, let's put aside the fact that we are all human beings, a huge thing to put aside.

One of the organizations that does a great deal here for autism and services, especially adult services, is the ARC. For those who are unaware, and it take a bit of initial digging to discover, this organization's name stands for Association of Retarded Citizens. Originally set up to support people with mental retardation, it has became apparent that many of these citizens were actually autistic, yet still require advocates and supports. The ARC has stepped up to the plate to include many intellectual and cognitive disabilities; autism, with its outward signs of communication and social challenges, is included.

Please check out the ARC and what it does in your area.

Finding a Good Book

Since Joey has begun reading, we were hoping to see him take an actual interest in reading. After all, reading gives us a whole new avenue to get information to him, and he does really well with it. We have bought a plethora of books of all types, a huge range of topics, anything to try to catch his attention. I could open a library, and I don't see that as a bad thing. I figure once his interest gets caught, he might start devouring them like Cookie Monster in a bakery.

But that didn't really happen. We encouraged him to read books, let him pick out the books, but it always seemed a chore. He did have a Blues Clues book he liked to read, but only at bedtime, and it was far below his reading level. We had another bright spot when he brought him Mouse's First Fall from the library, and read it to me. Joy of joys! But when he got his own copy, it was returned to the shelf- and again, it was far below his level. I figured the real excitement for him was the success; he could read these books all alone.

Lately, he has shown interest in Do Unto Otters, a book about manners, and would read that to himself at bedtime. However, he preferred certain pages to the whole book, mostly the one with the word "Snotter." Oh dear.

Then I bought a Pinky Dinky Doo book (Back to School). It is closer to his reading level, though still a little below. He's been loving watching Pinky Dinky Doo, so I thought it might catch his eye.

He's been carrying it around as if it were Bus. He reads it on the couch. He reads it in the car. He reads it in bed.

Folks, I think we have found a winner. And may there be many more to follow.

Are You Aware? VI

Here's one off the beaten path: what about communication? One of the greatest hurdles for kids with ASD is effective and functional communication skills. Finding alternatives to speaking can be a great thing, especially to lower frustration and increase communication. Keep in mind that the goal is often not perfect speech or even language, but communication.

We found sign language to be a great support for Joey. He was better able to process both receptive and expressive language with the signs as visual and kinetic cues. Although he doesn't do a lot of signing himself, often using signs (especially in chaotic environments) really helps keep Joey focused and communicating!

Want a quick, painless way to pick up some functional signs? We recommend Signing Time!

Are You Aware? V

I was referred to this post by a great parent, Niksmom. When I talk about "Are You Aware?" I want to remind folks that there is a difference between knowing something and understanding something. Awareness needs to mean an increase in understanding, not just knowing.

And this article by kristen is exactly what we mean.

Are You Aware? IV

Some of my favorite links for awareness include little essays and stories about being a special needs parent. How did I feel about parenting and parents before I had a special needs child? How do I now relate to those Other Parents, the ones who are living a life that now seems so far away from mine. How can I explain to those Others what parenting is in my life? How do we reforge those connections of "Parent"?

One of the essays I liked early on was Mother at the Swings by Vicki Forman. It describes a scene I find myself in so often- being at the playpark, with one of those Other Parents who want to connect, and don't know how, but are trying their best. The paradox of isolation while standing with Others doing with they are doing is something I related to at once.

Are You Aware? III

When researching autism, it is a good idea to consider a wide variety of experiences. A good place to look for a variety of blogs is the Autism Hub.