On November 30th, Scientific American Online published what to me is an important article titled, "The Hidden Potential of Autistic Kids: What intelligence tests might be overlooking when it comes to autism," by Rose Eveleth (http://www.scientificamerican.com/article.cfm?id=the-hidden-potential-of-autistic-kids). I want to share with you the comment I posted to the article.

Your research brought tears to my eyes. What you have written about is at the heart of what I have been trying to do by establishing Alex's Art Loft. My son, Alex, has always been considered low functioning and did not do well on standardized tests. He is nonverbal and has many limitations, but crafts is not one of them. It took me years to figure out that he liked to work with tiny beads and tools. While people got frustrated with him because he
wouldn't follow the rules in certain games (why hit a ball with a golf club or pool cue when you can just drop it into the hole?), I saw his way of thinking as an ingenious way to save time.

I saw his stubbornness and devotion to order admirable in a society which often disregards the rules. I took his prompt dependence to mean a deep respect for others' authority and
a need for assurance and acceptance. Don't we all want to make sure we do a good job by being certain of what is asked of us? Sometimes I wish he would initiate more, but I'd rather have a son who is shy rather than self-entitled. It's tough to change your way of thinking about what it means to be successful, appropriate, and yes, human. But like learning a new skill, it can also be enlightening. When a parent of another autistic child approaches me and says, "My child could never do what your son does, he doesn't have the..." I say, "then your child can hold the string, pass the beads, push the button, clap, smile...to help my son." When is society going to realize that it doesn't make a difference how we do what we do? As long as the ball goes in the hole, there's always going to be a winner.

I just read what I believe is a really important article in Scientific American titled, "The Hidden Potential of Autistic Kids: What intelligence tests might be overlooking when it comes to autism," from the November 30, 2011, edition by Rose Eveleth.

Here's an exerpt:

"Many researchers are starting to rethink how much we really know about autistic people and their abilities. These researchers are coming to the conclusion that we might be underestimating what they are capable of contributing to society. Autism is a spectrum disease with two very different ends. At one extreme are “high functioning” people who often hold jobs and keep friends and can get along well in the world. At the other, "low functioning" side are people who cannot operate on their own. Many of them are diagnosed with mental retardation and have to be kept under constant care. But these diagnoses focus on what autistic people cannot do. Now a growing number of scientists are turning that around to look at what autistic people are good at."

I'm wondering what took scientists so long.

Because I teach at a community college I am surrounded by high school students eager to start their lives as adults. Isn't it great to be independent? Maybe. At a time when jobs are scarce, there are even less job oportunities for adults with autism.

As a parent, I worry about my son being independent. At 18, we thought that we would be helping our son with college applications, but instead I am filling out applications for SSI and legal guardianship. Not exactly a thrill.  I teach students how to write a better college application essay; somehow I have compartmentalized that so I can do it without sadness.  When people ask me how old my son is, the question is almost always followed by another one: What college is he going to next year? It's okay, I tell myself.  Not everyone goes to college.  It is ironic that being independent for a person with autism actually requires a stint at the courthouse where that person's rights are limited, if not taken away. Not everyone files for legal guardianship, but in our case I believe it is necessary. Yet, I also feel a sense of relief knowing that we have come this far. If I had to choose between Alex having a college education or being happy, I would pick the latter. Today Alex is happy, and although I am somewhat conflicted between who I am as a mother and teacher, I believe that happiness depends more on where you've been rather than wher you're going.

As 2011 rolls in, Alex's Art Loft hopes to see a minor profit, but then again, it's not all about the money.  It's about being positive.  Debt is only a state of mind. Right?  So this year we intend to have Alex broaden his horizons by doing more pottery (he stamps clay with the autism ribbon and anything else that looks like it is interesting) and has learned to cut, press, smooth and roll clay which is then fired thanks to Wightman Road Pottery.  He does this willingly (thank God because we are running out of ideas).  Alex created  new cards:
 DC Monument,  Cat, Easter Egg, and a Polar Bear.  He is also beading hand crafted polymer beads with sunflowers on them to move us into spring.

 My husband and I argued over why Quickbooks didn't agree with the checking account. I wish we had an intern who was good at accounting! Alex is typing a Power Point presentation of his business at IvyMount. I never thought I would use the words "Alex" and "Power Point" in the same sentence.  He will be 18 in July. When most teens are applying to colleges, Alex struggles to type.  It's okay, though.  I'll gladly take this "profit." It means so much more to me than all of the losses. Perspective is such a powerful word.

Alex's Art Loft officially began in November 2009 with a grant from the LEAP organization. The business has taken me down a road of discovery which I hope to share with many parents of adults with disabilities. It has given Alex an opportunity to play an active role in his future, and allowed us to begin to save some money for his care.

Alex's Art Loft has showed me that there are many things that I need to be thankful for.  I am thankful for my family who inspires me everyday with their dedication and courage.  When most teens seem to be distancing themselves from their parents, I am grateful to have found more in common with my son than I ever knew possible.  When most couples with children with disabilities are divorced, I am thankful for my husband Dan who sticks with us and the business.

I am thankful for the generosity of others, particularly the businesses and organizations (Mosaic Cuisine, Butler's Orchard, Cheryl's Health Boutique, Parcel Plus, Wightman Road Pottery, Women's Leadership, Washington Parent magazine...) who have generously opened themselves up to the possibilities of what a person with autism can accomplish.

Also, I am thankful for those who we have had a chance to help, particularly the Veterans Art Organization, Project Friend, the Brain Injury Association, and Autism Speaks.

I know that to create great art, one doesn't need to be a great artist.  One just has to believe in the simplicity of life, have patience, and endure obstacles.

Every day seems like a new adventure not only for Alex, but for me as well. 

Alex has sold his art at several exhibitions, including at the Maryland Chapter of the Brain Injury Association's Conference, which was quite a feat.  He stayed at the table for several hours and beaded custom bracelets for many health-care professionals and attendees, alike. 

I have truly learned what it means to be ultra-prepared. During the last few months I have gotten a trader's license, filed tax returns, and learned Quickbooks (twice)!  I never thought I would grow so much with a business and learn to love the time it has given us as a family to bond.

Most of the time technology baffles me.  I try to learn as quickly as I can so I can teach Alex and the wonderful people who work with him.

My first experience with Quickbooks was not good because I am not a "numbers" person, and I'm aging rapidly, so I don't comprehend even the video tutorials quickly.  Instead I chose to hire an accountant to help me, and he demystified Quickbooks to the point that Alex could enter in customer names and e-mail addresses and I could balance the checking account.  The next step was to get the inventory into Excel and transfer what we had put in Quickbbooks into an Excel spreadsheet.  Alex is a pro at counting inventory, although like his mother, he tends to move at a slower pace when learning something new. 

What I learned is that we have a lot of cards that need to be sold.  We have also added beads to the inventory...try keeping track of beads one day.  God knows how many have been sucked up by the vacuum cleaner!

After we decided to open a business for Alex, we had to fund it.  That's where the grant from LEAP greatly benefitted Alex (see the paragraphs introducing Alex for more info. on this organization).  This grant enabled us to get a generous, talented designer, Rita Lewis from Words to Web, to help design the site.

I did, however, do a few things backwards.  Always apply for a Trade Name, an EIN number, and a separate checking account for the business before making sales.  I stayed on the phone for 30 minutes to get Alex's Art Loft's business identification number, and it took 45 days to get the name of his business cleared.  Without that information, you can't open a checking account.  It also doesn't hurt to learn Quickbooks before beginning the sales process.  I also had to contact an attorney to make sure that the business would be placed in trust for him.  There is also a $2,000 limit on what he can have in his account in order to still collect Medicaid. Rules, rules, and more rules...

Before I knew it, Christmas was upon us. We had printed cards to sell, but none of this was in place yet....

Alex's Art Loft sold cards at Ascension Church in Rockville, a small craft fair with a myriad of little vendors, in December 2009.  Unfortunately, that was the day of the first major blizzard in the DC area, but Alex and we got there and stayed the whole time, 9am - 3pm.

Alex arrived after the set up (we need to include him in this, eventually) which consisted of a "loft" like case that he painted, printed cards, a notebook for e-mail addressess, business cards, a basket of free cookie cutter giveaways, and some bracelets Alex beaded which were also for sale (he loves to string teeny, tiny beads:) ).

It snowed buckets.  Alex sat at the table with his Chat PC programmed into say three things:

1. Thank you for visiting my table

2.  I sell homemade cards

...

As Alex enters his middle teen years, we've begun thinking about how he can survive and prosper in his adult years and what will happen to him as we age. So, his occupational therapy has begun to consist of trials of various job situations.

For example, last year was Alex's first year in a self-contained class at Ivy Mount School in Rockville, MD.  There, he was taken into several vocational placements, including a stint at local local shoe store, DSW, that didn't work out so well (you try sorting through all those women's shoes after a huge sale!!!).  Next, he was placed at Marshall's, where he became "a size-tag sorter extraordinaire," but alas, this too came to an end.

Alex also volunteers at the local 7-11 washing the windows and stocking shelves. But he only does this for 20 minutes a week. He can type maybe 12 words a minute, but how many people really need typists?  I soon learned that the competition for many of the types jobs a young man with autism and aphasia, such as Alex, is eligible for and is capable of doing (and still may do one day) is stiff or non-existent due to funding cuts in the money allocated for support of the handicapped.  Schools also use a variety of these placements, thus making them more difficult to find for adults.  So, I took a deep breath and said to myself, "think out of the box."

Luckily, one day I was cleaning out the closet and I came across an art portfolio that he had done with Tammy, Alex's home art instructor.  The paintings kind of worked together. Tammy could get him to mix colors, use pastels, charcoal, and glue like no one I knew. I thought I had stumbled into something that might work. When I showed his art in the Montgomery County Fair this past summer, he won some prizes.  So began our quest for funding Alex's Art something, something....

Hi readers (I hope some will come, eventually...)

I want to share my experiences thus far about creating this business for our son, Alex, who is 16 and autistic in the hope that it will help parents of special-needs teens and adults who are facing the same questions my husband and I face every day:  How can we help Alex be a productive, independent part of his community?  We have a son who is primarily nonverbal, at a 2nd grade level academically and has few social skills.  He is considered by some to be in the middle of the spectrum, which I interpret as neither too high nor too low.  His saving grace is that he is well-behaved (thank God for all that went into that... maybe another blog), but he is also prompt-dependent and not, shall we say, "speedy" in doing things except at computer games.  At his age, the dreaded words "transition" and "legal guardianship" are now being spoken.  So, what's in store for Alex?

I'm making it up as I go along....