1 in 68: An Autism Transition Story

My son Alex graduated last year, at a  graduation ceremony designed for him which included family and past teachers as guests. I blurred the photo so that people are not identifiable as I don't have their permission to share their photos.  

With the support of many of the people above, my son learned skills that have helped and will help him live his life.  He worked hard, teachers and therapists worked hard. It was so gratifying that a teacher from each of his schools came to his graduation.  These teachers really cared about their students.  

He graduated to no supports other than his family because our state had frozen services to people with developmental disabilities.  Many parents had to quit jobs to care for their adult offspring who had graduated. We were lucky that I had long ago become the on-call parent, not working for a while, then working part time at night, then selling art on the internet. We are lucky we can do that. And we are lucky to have some wonderful people that we pay to do things my son enjoys with him.

My son can do many things, and many more if supported. We were happy in September to hear that he had been approved to participate in some day programs.  We were hopeful that he would be able to continue growing and learning. But programs available are either not as structured or predictable as he needs, or they are dealing with content he cannot relate to.  He has struggled without the necessary supports.

The programs available provide a physical place for him, but not the staffing to give him the support he needs to learn and thrive.  The models in place work quite well for some people who are fairly independent.  The agencies' budgets do not stretch to provide supports for those with significant needs.  I am not faulting the agencies.  They are good people doing the best they can with the resources given.

The result is those who need significant support 

may end up with none. 

So on the books, the state can say they provided X to people with disabilities.  But a portion of those on their books are not able to receive services, because it is not offered in a way that is accessible to them. That would be like telling a man who cannot walk, "Look, five miles down the road there are crutches. Go get them."  Or to ask a sightless person to read aloud from a non-Braille book.

As a society, we must do better than this! 

Much of my time this past year has been spent advocating and spending time with my son. This is why there is less art here and more writing. This is the way it will be for a while.

~ Dixie Redmond

Expectations and Acceptance

I've been thinking about how our  needs, wants, abilities and environment can direct our course in life. What we expect of ourselves and others is born of this process.  It requires honesty.  This comes with time, too.  No one would expect a 6 year old, or even a 20 year old to accurately gauge their needs, wants and environment.  For one thing, some of these things are changeable.  Some abilities can be learned.  The environment may change.  What we want when we are five may be far different from when we are twenty-five.  What I cared about at 25 is quite different from what I care about now, at 51.

I've been thinking about all of this in light of autism as well, as this month is Autism Awareness Month and Autism Acceptance Month.  How do I help my son look at his needs, wants, abilities and environment?  I, at 51, can see some things that he cannot.  I, because of my experience and abilities, can see some red flags that he cannot. 

I accept my son fully as he is and fully expect that he will continue learning and growing as he can.   I did not stop growing and learning at 20, and don't expect to stop learning and growing at 51.   Our family will learn and grow together.   We will accept everyone's needs, wants and abilities.  An example from today was when my son asked, "Is it okay to clap-dance or not?"   (Lots of people with autism do a hand movements, my son's involve clapping) .  And the answer to that is yes, here in the family room at 10 a.m. but no not in your sleeping brother's room at 5 a.m.    

Learning and growing is a messy business.  Sometimes people have competing needs and wants. Sometimes people have differing abilities.  Fact of life, not everyone's wants will be met all the time. Sometimes there are road blocks in our environment.  Sometimes our abilities don't match the task at hand.  It's not always easy to sort these out.  But when we gauge it right, it is beautiful.  That's my hope for the future.

My son's graduation from school is a big milestone. B. I. G.  I don't think I can overstate it.  It will mean a BIG adjustment on his part and our parts as well.  But it is not the end of his story any more than my graduation from high school was the end of my story.  It's the end of one chapter, and the beginning of another.

~ Dixie Redmond

The Sensory Friendly Way to Buy Shoes: Zappos, You Have WON My Heart

You have won my heart, Zappos.com.  

Nope.  This is not a paid advertisement.  I don't do that.  I do, however, talk about products and businesses that I like from time to time.  

Shoe shopping used to be very very hard for my son who is autistic.  Just going to the store is a big deal with the shoe-boxes everywhere, flickering flourescent lights.  And then waiting for someone to help us.  Just that alone is a sensory obstacle course for a person on the autism spectrum.  Then taking off and on shoes.  And putting on the other shoes. He was so overwhelmed I could not get a good read on whether the shoes fit and were comfortable.  And so at times we bought shoes thinking they were okay only to find they are NOT okay a few days later. 

Merrell Jungle Moc

Recently I ordered nine pair of shoes delivered to my door through Zappos.  In the comfort of our own home, without going to the crazy mall area, I was able to have my son try on nine pair of shoes.  We decided to go with non-tie slip on shoes.  We found one pair that fit, which he is wearing today at school.  

I will be ordering more.  Zappos, I heart you big time.  So thank you for making shoe buying easier.  Plus Santa sent something for me, too, in the big box of shoes.  Shhhhhhhhh. 

~ Dixie Redmond

I Want a World Where Both My Boys Are Valued

I want a world where both my boys are valued. Yet, I seem to live in a world that would give my neurotypical son a heart transplant but not my autistic son. 

A young man named Paul Corby, aged 23, was just denied a spot on a heart transplant list because he has autism.

Several years ago at the Lincoln Memorial in DC
after walking miles and miles in the rain

Dixie Redmond

Bootstraps: If You've Got Them, Yank Away

If you read this to the end you are probably family OR you are a friend. Thank you for taking the time!  Where have I been? Why aren't I blogging?   Here's why.  This is the last "summer vacation" for my oldest son who is on the autism spectrum before graduating. I'm trying to make it a good summer for all and also look ahead for what life might be like after school ends.   

Here's a video about planning for adults on the autism spectrum after school ends.   It's about 12 minutes, and is a fairly good representations of challenges facing people on the autism spectrum and their families when school ends.  I like that there is truth and some hope in this video.  I love that the man who loves vacuum cleaners got a job vacuuming 4 days a week. "Doug getting a job vacuuming would be like me getting a job to drink beer and watch the Patriots," says Dad.

When people on the autism spectrum leave school in Maine they lose services. As an example, for adults with disabilities to receive housing services in Maine, there has to be proven abuse, neglect or exploitation in their present situations. The meager budget for housing for people with special needs has a waiting list close to 900 at present time, with about 20 people a year being taken off the waiting list to date this year.  If a young adult with developmental disabilities is placed on the waiting list today for housing, and placement in services continues at the present rate, they might receive services in 36 years, when they are in their 50's, and their parents are in their twilight years.  I look to families with older children with special needs to see what might lie ahead. I don't like what I see, truthfully. It  makes me anxious about my son's future.   

Here is one example:

The Spencer family is looking for housing services for Katie, their 32 year old daughter who is medically fragile.  The family is no longer able to care for Katie.  The mom is ill, and taking chemotherapy, trying to work, and their daughter has been refused dayhab services because she has developed a condition where she faints unexpectedly.

One commenter on the article said it was "despicable" that these hard-working parents should expect the government to help their daughter.  He states he pulled himself up by his own bootstraps and believes that extended family should step in to help the family out rather than look to the government for help for their daughter. Which assumes that the family needing help has family nearby, ready and willing to help. Some families do, some families don't.  

I believe bootstrapping is a myth.  All the successful people I know started off with help from another person, whether it was with dollars invested or a person taking a chance on them when they were starting out.  Sure, they worked hard with the opportunities that came their way.  They worked very hard and put themselves out there.  Good for them and kudos to them.  But at some point their future faced a tipping point that someone else had the the ability to make it go one way or another. It's a rare person who created his or her own opportunity out of thin air.

What about those who don't have bootstraps?  Eventually the Katies of the world will be on their own.  Their parents will die.  Will they be at the mercy of the views of the howdyneighbors of the world? I believe that how the Katies of the world are viewed and treated are a reflection of the health of our society.

If you live in Maine, make your voice heard for Katie.  

Dixie Redmond

Scratchy Lunchroom Napkins Can Catch Tears

This week I went to a conference on Raising Aspirations for people with special needs who are transitioning from childhood to adulthood, and what the opportunities are.   A couple of the sessions had me catching tears with the scratchy lunchroom napkins I had shoved into my pocketbook at lunch.  The image of a 63 year old woman with her first paycheck ever was beautiful.  And yet sad because why did it have to wait until she was 63?  There were stories of hope, and there were stories of failure.   They both made me cry.  As a parent of a son with autism, I want to have high hopes for him.   What is reasonable to expect of him, of us, of the larger society?  A statement to "plan for your child to be poor" was heartbreaking.  Who wants to envision that for their child?

This week I watched American Idol with my younger son.  People have mixed views of American Idol.  But it's interesting to see these artists grow and change and become.   This 20 year old young man from Leesburg, Georgia won the competition and sang this song.   Which speaks so much to the journey ahead.  I've been carrying this song around with me while I work and mom.  These lines in particular:  


 "settle down it'll all be clear don't pay no mind to the demons  they fill you with fear.." 
Some of the worst decisions made in my in life have been fear-based.  I have to check myself if I am making a decision from fear.  If that's the case, then I wait.  Does this apply to art?  Yes.  It applies to decisions made about direction.  It applies to larger life as well.    I have a deep respect for songwriters.  They write the accompaniment for people's lives, if you will. I believe they have a holy calling.  
Home was written by  Drew Pearson and Greg Holden.  
Check out singer songwriter Greg Holden's site here. And here he is singing the song he wrote:

Dixie Redmond

World Autism Day - Put a Face On It

I told my son it's World Autism Day and he asked warily, "What does that mean?"   My answer for him and for our family...it's a day to celebrate the people we know who have autism. So we will be making The Best Ever Chewy Chocolate Chip Cookies after school.
Chances are, you know someone who has autism in their family. They are real people, not just shiny pictures in brochures.  I'm not going to write much about autism this month.  I write about it fairly often throughout the year. You can read my posts about autism here.   My  favorite autism post is here.    
The Thinking Person's Guide to Autism will be posting daily interviews featuring people with autism (autistics). 
My son is growing up.  I'm proud of him.  He has worked very hard over the years to learn things. He has had great teachers and therapists who have helped him learn.  He is still learning, and so are we, in how to help him learn.  School will end for him, but learning won't. Or for us.  

A Hopeful Model: Living Situations for Adults with Autism

I tried writing about autism on a separate blog.  But it was too separate.    If I didn't have a son with autism I probably wouldn't even be making art to sell online.  So I went back to writing about autism here.   You don't have to read the autism posts, but having a child with autism is why I make and sell art via the internet. 

I was thrilled to see this hopeful living situation called Juniper Hill Farms via Dude, I'm an Aspie which I found via The Thinking Person's Guide to Autism's Twitter Feed.  I was glad to find a positive example of a living situation for adults with autism who need some support.  A kind of example to follow.  So I wanted to share that, too.   Click the image below to go to Juniper Hill Farms site. 

Dixie Redmond

Day 11 of 31 Days of Art: Really Looking At Things

For the past few days my "art" has been about family

and taking photos on a mini-trip. 

Boy meets beach.

 

The grass looked so soft as we walked up toward the beach.

The beach is a magical place at twilight.  
Soon twilight gives way to night.
It was good.

Day 19: What Does Art Have to Do With Autism?

My 20 Days of Wiping the Slate Clean took a different direction.  I thought it was all about getting some projects finished and getting some things cleaned out. 

I revised this post and deleted a lot of information, which was about autism. I deleted some of it because I don't support an organization that I once thought had good information. The other reason is I am still learning, and I'm doing that in a more quiet way. 

Day 16: Thinking About Autism

This is not about art, it's about autism.  But it IS part of my 20 Day Campaign of cleaning out - and this is about cleaning out mentally.   I have a son who is autistic.

This week I have  been reading views written by autistic adults on The Thinking Person's Guide to Autism.   As an aside, some people with autism prefer to be called autistic because "with autism" sounds like autism is something that is separate from them. 

My own son has reached the legal age of adulthood.  I need more information about being autistic and grown up, so I started reading this and other blogs about autism.   And then last Monday I stepped in it big time with a comment I made that adults with autism feel was the equivalent of telling them their views weren't important.    Ouch.

I've snipped out most of the original of this post, as I want more time to think.   But reading this site has given me a lot of food for thought.  It certainly has broadened my thoughts in many ways, although I'm sure they can always be broadened more.  

  

Day 11: Momming

One of my kids was sick yesterday and today so Day 11 has been about taking care of  my son and  other things.  I'm not gonna worry that I'm behind.

In between doing household stuff and caring for my son, I read The Thinking Person's Guide to Autism, an outstanding blog about issues dealing with autism.  Right now there is an interesting series going on about parent advocacy and self-advocacy for people who have autism.

Autism Awareness Day

I have reconsidered some of what I have written about autism.  I think it's okay to say, "Hey, I said some things I wouldn't say today."  And so the post goes "poof"!

If you'd like to know more about autism, click here.

DC Trip Condensed

We took 573 pictures while in DC. Lucky for you, I've condensed the trip for you to a few. On the first day my older son and I went into the Smithsonian National Portrait Museum. He likes museums - they're quiet and we were having a good time looking at pictures. I stood in front of the folk art sculpture above, almost forgetting Alex was there when I heard him ask,

"Should I ride that?"

At this point I found a nice bench for Alex and I to sit on and discuss whether or not he should ride the priceless folk art sculpture. It went something like this:

Me: Alex, that sculpture is priceless, and we don't won't to break it.

Alex: Oh, so it's not worth much because it doesn't have a price.

Me: No, priceless means that there is only one like it and you can't ever get another one just like it.

Alex: Oh!

Me: And when we're in museums, we have to show respect. (This line was repeated often during our trip to DC). We can look with our eyes and enjoy that but we can't ever touch the paintings and sculptures.

The funny thing is, I can't get the image of Alex riding a bottle cap covered giraffe out of my head. Wouldn't it be fun if it came to life and he really could ride it? I think I need to make a painting of it. And there wouldn't be a jail involved.

This picture was taken after we had walked
for miles and miles and miles in the drizzle
to get to the Lincoln Memorial.

My younger son didn't believe
how big the statue of Lincoln was
until we got there.
This picture captures
how big the story is.
Powerful.

As we were leaving the Lincoln Memorial my son said,

"Mom! Mom! Come look at this!
We're standing where Martin Luther King
gave his "I Have a Dream" speech."

The boys at the Washington Memorial.

Arlington.
No words can express my thankfulness.

We met up with friends at the Smithsonian Museums.
Chris got this picture of all 4 of us together.
It was a great trip.

Autism Awareness Day

Today someone told my son it was Autism Awareness Day. His response was, "What does that have to do with anything???"

Oh, the irony. My son has autism. He was diagnosed when he was 3 years old. His diagnosis came after lots of questions, and reading. It came after being told he was a late bloomer and that I was an overprotective first time mama. I tried to explain to the people who saw him once or twice a year for 10 minutes what my concerns were, and they didn't get it. All kids are active. All kids enjoy spinning in circles. Lots of kids walk on their toes. Relax, mom and everything will be fine.

Everything is fine in many ways. Alex has autism, and that hasn't gone away. And it won't. He (and consequently we as a family) sometimes have challenges doing things that most people do without thought. Things like going to his brother's soccer games. Or eating in a restaurant. Or Laser Toilets in public restrooms. But even with these challenges, he's grown and changed and been able to do things I wasn't sure he would ever do. Each week in adaptive phys ed he swims 1/4 mile. It took years for him to learn to swim over his head without a life preserver. It took him 6 years to learn to ride a bike, but now it's something he can do when all his cousins are over and he's part of the group. These accomplishments came from his incredible work ethic, and from the dedication of teachers and consultants and babysitters and aunts and uncles and mom and dad.

We're now setting goals for his adulthood, for a time when we might not be around. We're thinking about how to prepare him for the world, and that's not easy. There aren't any easy answers, and no sure bets. But he has had some wonderful people work with him in the past, and I am hopeful that he will have some wonderful people work with him in his future. He will continue to learn and grow. We all will.

Making Weighted Blankets

I once went to a Women in Business seminar where the middle aged woman said, "A micro-business is a great way to use those middle of the night insomnia times." She was right. I didn't work on business stuff, though, when I woke up at 4 a.m. this morning and couldn't get back to sleep. I made a weighted blanket. I priced these online and decided I could make one myself.

A weighted blanket is helpful for people who have sensory challenges. They can be calming to some kids' bodies who have autism. My son who has autism likes to use one. Never put them over a child's head, though. I used pinto beans as the weights in my weighted blanket. It's a bit like a puff comforter but instead of stuffing with polyester stuffing you put beans in the squares.

1. You make a big pillowcase. Crib sized is a good size, but the one I made is a bit bigger.

2. Turn the pillowcase right side out and mark vertical lines equally spaced apart. Sew on these lines.

3. Put a cup of beans in each vertical channel and then sew horizontally across the quilt. These seals the beans in to the squares. Repeat until you get to the top, and then sew closed.

This is a quick and easy weighted blanket, but obviously is not washable. If I wanted to, I could make a duvet cover for the weighted blanket. If I were going to do this again, I might design it differently, so that the weights would be bean bags that could be tucked inside pockets. But I have one for now... I did learn some things NOT to do. Add the beans just before you sew each square closed. Have a large table with a lot of holding room for the weighted blanket to the left of your sewing machine. Use a fabric that has some stiffness to it - it's easier to sew. But you don't want it to be too rough.

Here are some other directions for making weighted blankets.

http://www.fraser.org/tip_sheets/weighted_blanket.pdf

http://www.fraser.org/tip_sheets/travel_weighted_blanket.pdf

Special Olympics Joy

Just before my son raced in the snowshoeing event this past Tuesday at Special Olympics he said, "Stopping is not an option, right?" I thought it was such an interesting question. Kids who have worked very hard to learn a skill use that skill. Yay for students and teachers and parents of kids with special needs! And yay for all the big-hearted people who volunteer at Special Olympics!  (Since I originally posted this I have reconsidered some ideas. Of course, stopping is an option, if my son wants to.  He enjoys participating,  When he doesn't, he won't.).