Support group...check it out!

Run, don't walk over to the 2Peas Autism Support Group on yahoo. It's a newly formed, VERY active group filled with tons of experience, insight and amazing support.

The group description says, "A place where 2peas members (and anyone else) can support, uplift, and be there for one another while dealing with autism. Chatting about autism, how we are dealing, how the children are dealing, etc. will be what is discussed here. Scrapbooking can be discussed here but will not be a major player in this group. Anyone can join, friends, parents, family members of people who are affected by autism, in order to gain more knowledge and support of the autism spectrum disorder."

In case your wondering, 2Peas is a scrapbooking community, but anyone can join this group. We're not talking about scrapbooking, the common bond is Autism. Come on over and join us now!

Feeding

Here's Lowell feeding me my cereal this morning. What is so remarkable about this is that he REFUSES to use a spoon himself. He *clearly* has the skills and loves to feed me, but will not allow me to feed him or will use one at all by himself. He has missed out on all spoon necessary foods for the past year a half. I'm talking applesauce, pudding, cottage cheese, soup, yogurt, you name it! Ugh...cute, but frustrating!
He's also back on a gluten free/casein free diet. The diet is so difficult to maintain, but we have really seen changes, especially with his stool. Not to go into a lot of details, but it's night and day when he is eating gluten and when he's not as far as stool consistency. I guess it's worth it to make him feel more comfortable. I'm intrigued with the research on Autism and gastrointestinal issues. Here are a bunch of web sites from neurodiversity.com about the link between the two. I would like to find out more about this. I'm also curious to actually have him tested for dairy and wheat allergies, just to see if anything shows up. I just dread having to get the blood test to do this. We would practically have to sedate him...really.

Book props

My latest play activity that is really resonating well with Lowell (and Chloe) is having props to go with the books we read over and over. I recently bought a copy of the beloved "The Very Hungry Caterpillar" by Eric Carle. I knew Lowell would like it, because it had counting involved. I also came across this wonderful basket of painted wooden fruit by Melissa & Doug (LOVE their stuff!). The fruit happened to match perfectly with the food in the book. I was pretending to gobble up each fruit as I read the corresponding page and we counted together. It really kept Lowell's attention and later in the day I found him pretending to eat the food himself. This is big for him, since he's usually not one for "make believe" play.
So I gathered another basket, I found as many of the animals to match as I could from another current favorite, "Brown Bear, Brown Bear, What do you see?" I had to use a white sheep, instead of black and our Mister Potato Head is the "teacher" (which Lowell loves to say!). Lowell wasn't as into the stuffed animals as the fruit, but it did keep his attention. I find that when he mimics us reading he just mumbles very quickly and then says a few random words clearly. I wonder if that's how we sound to him. I think that using props also helps me to slow down and have more teaching opportunities throughout the book using the props.

"Five Little Ducks" was next. That was simple to pull together and the kids seemed to enjoy having a tangible animal to look at during the reading of the book. I feel good that since we took away all of Lowell's battery operated "noise making" toys, we are now replacing them with more educational and engaging toys:)

On to the next book......

So many books, so little time

First, I just have to share this picture of Lowell and daddy playing Starfall on the computer. He LOVES it and it really gets him talking:)

After reading Tilt, I find myself wanting to read more books about other parents experiences having a child with autism. I tend to get into these types of reading frenzies during major life changes. When I was pregnant, I loved reading diary-type books about pregnant women. I think it's just one of those ways of reaching out for support. So right now I have on my reading list:

*The Boy Who Loved Windows: Opening the heart and mind of a child threatened with Autism
*The Mind Tree: A miraculous child breaks the silence of Autism
*A Real Boy: A true story of Autism, early intervention and recovery
*Thinking in Pictures: And other reports from my life with Autism
*A Wild Ride up the Cupboards
*Daniel Isn't Talking
*Send in the Idiots: Stories from the other side of Autism
*A Slant of Sun

I find myself looking up information on the authors as well. Seeing if they've really been through it, lived it and are writing from personal experience. They pretty much are. I was thrilled to find that Marti Leimbach, the author of Daniel Isn't Talking, has a blog here as well. In an article she posted online, called A Life Less Ordinary, she addresses many of the same feelings that I'm having and have written about here on my blog (see first post on being "normal"). This really gets right to the heart.

"At night I read accounts of autistic children who had progressed: one child with no language who began to speak; another who could not understand the purpose of a toy and then, after much intervention, learnt to play. I dreamt of one day telling a similar story about Nicholas before an audience of teachers and psychiatrists.

These were the people who told me Nicholas would 'have no useful language', would never attend normal school, and that our efforts to teach him would make no lasting difference. They would all be amazed by his transformation, by how he had shed autism and become a splendidly ordinary little boy.

Of course, this is not the story that transpired. At nine years old Nicholas has made great progress but he will never be normal, and I have learnt that 'normal' should not be the goal. The tools we have given him, hour by hour through an enormous educational effort, have allowed him to express himself - and who he is still includes a great measure of autism.

However, he doesn't 'live in his own world', as autistic children are sometimes said to. He is not silent or withdrawn. Due to early intervention, Nicholas manages his autism so that it is not as great a disability as it could have been.

I can see that within this child lies an intelligence different to my own but no less valid. I can see also that his path in life will be challenging. Am I afraid of what may happen in the future? Yes, but I am comforted by how gentle people are with him, how they forgive his averted gaze, his nervous rocking, his long speeches. It ignites in me a flame of hope, not that he will be 'normal' but that he will be accepted and loved for who he is, however different."

Taking back playtime

Our latest "trial" with Lowell has been gradually taking away all of his battery operated noise making toys (see picture). He had really started to obsess about some of them. He would usually take one of them at a time, hold it up to his ear and press the noise button over and over (and over) again. Since we've taken them away, we've noticed that he's started to PLAY again! It's also much, much quieter around here without the racket of the toys and their noises. He has also become much more verbal lately. Not sure if it's directly related to taking away the toys, but we certainly have noticed some changes in his behavior. We still have plenty of toys around for him to play with. "Old school" toys like play doh, puzzles, blocks, pull toys, balls, train set, drawing, and books. I like those better anyway:) The theme bins that I mentioned in an earlier post are working nicely. It's really great to have less stuff cluttered about and he seems to be more interactive with what he plays with.

A couple of reviews and a breakthrough

I just finished reading the book Tilt by Elizabeth Burns. What an emotionally powerful read. It is by a local author and I've been told is almost entirely autobiographical. It is about a mother's struggle to hold her family together. Her daughter is severly autistic, her husband is bipolar and life is almost too much for her to bare. I got completely sucked into the book, because so much of her emotion, thoughts and feelings rang true for me. She wrote about things that I'm almost embarrassed to even admit to myself that I think about. In a sad way, this book also gives me a comforting feeling that it could be so much worse. While my husband and I struggle daily with our anxieties about what our family life will entail and what Lowell's future may hold, this book brings up some of the issues we face and talking points to ponder.

Also, the cover story of Time magazine this week (May 15th issue) is on the autistic mind. Very facinating read! Some of the articles are partially available online.

Lowell Update: He is starting to repeat words a more. For a long time we would try to verbally prompt him to say a word and got no response. Then we became obsessed with letters. After mastering the alphabet we started putting letters together. After taking the Doodle Pro that we bought Chloe for her birthday and writing out words we figured out that the way to increase his vocabulary is to show him an object, spell it out, write down the word, he will trace the letters of the word, then underline it and say the word. He has learned dozens of new words in the last few weeks using this technique. He seems to really get it!

Themed boxes

My current project is organizing all of the kids toys into themed boxes. That way they aren't all out at the same time. They are each labeled and I have another copy of the same picture that is on the front of each box. We will start to work with Lowell on requesting what he would like, by choosing between the "animal" picture or the "tools" picture, for instance. We will then get the corresponding box out for the day. I first saw this idea in the fabulous book Playing, Laughing and Learning with Children on the Autism Spectrum. The book says that there are a few reasons for having several boxes, because children with autism tend to:

*have poor attention pans and may flit between toys without directing attention to any one in particular.
*not know which toys they have unless they are items of obsession.
*have language difficulties that make requesting a certain toy frustrating.
*have imagination problems, which means that varying toys each day keeps up interest.

Varying toys builds in flexibility and prevents your child from becoming fixated on having one collection of items which he expects and needs to see in the same place every day.

I really had fun putting these boxes together and now know what I want to look for at garage sales to enhance some of them. I tried to put at least one puzzle, some books, different sensory activities, animals or puppets, etc. in each box on the given theme. **Note to self: Do not work on boxes when kids are awake! They were very intrigued with all the "new" toys that seemed to be popping up all over the place:)


Themes I thought of include:
colors~art~ shapes~ food/store
things that go~water~ music~ ABC's
zoo/animals~numbers~ farm~ plants
seasons~people~ tools~ holiday's

I treated myself at the end of the day to a shopping trip for new books for some of the boxes:)

Here we are...

digital page by the wonderful Jennifer Pebbles

Are you thinking, "that's an odd name for a blog?" Especially coming from me. Someone who has never really wanted to be normal. That always seemed so artificial, so contrived, so well...mainstream. I used to have a bumper sticker on my car (my dad still does), that says "why be normal?" In the dictionary normal looks like this:

nor·mal ( P ) Pronunciation Key (nôrml)adj. Conforming with, adhering to, or constituting a norm, standard, pattern, level, or type; typical: normal room temperature; one's normal weight; normal diplomatic relations.

Below that is another (more aprpos) definition:

Biology. Functioning or occurring in a natural way; lacking observable abnormalities or deficiencies.

So, this blog is about a journey I am now on. One that I could have never guessed I'd be part of and have no idea where it will take me. I have a 2.5 year old Autistic son. He was diagnosed with the educational Autism label at the age of two. Just in the last month he got the official medical diagnosis. I have another blog over at artsymama for my creative endeavors. This one is going to be for my journey as Lowell's mommy. Recording where we've been, where we are now and where we're going. I feel compelled to get this all written down. To connect with others on similar paths and print out for him to read someday and (hopefully) see how far he's come.

So, now I am now stumbling towards normalcy. I just want my son to be a normal kid... whatever that means. I'm struggling with the fact that now I'm a mommy of a special ed kid. You never see that on bumper stickers! Of course I love him for who he is. More than I could ever put into words. I want him to be happy, as any mother does. I want him to be successful in whatever he decides to persue. I just want him to function well enough to have the opportunities that normal kids have. This is all new to me and now I am sharing it with you. Come along, if you'd like. Take my hand.