Friday, June 26, 2009

Essay: My boy on rules

Image: My guy loves signs and rules. He follows both, but is prone to make up his own rules!

My neighbor set up a pool and handed out a set of rules (yay) with an invitation. My boy with autism thrives on rules and for the most part follows them. Sometimes, though, he decides to make up his own rules. He's been hard at work typing up his own set for the pool. He even printed a copy out and "lamented it" with packing tape.

Some of the rules are reflective of the rules you see at most public swimming pools. However, C! did try to add in a few of his very own, such as "no pets in swimming area." I had to veto that one. The neighbors have a chocolate lab that stays in the fenced in area where the pool is at. My guy is scared of big dogs, but he'll have to deal with that if he want to swim. Anyway here are his rules, misspellings and all:

6 NO GUNS IN POOL AREA OR POOL (water pistols)

My thoughts: The pool is "open" five afternoons a week, Monday thru Friday and both guys expect to go down there for all available "open" hours. That's 20 hours for a week--which is way too long to spend at the neighbor's place, especially since I need to help supervise. I think I need to add in a few rules of my own!!

We are in the midst of a two-week swimming lesson session at the university pool in the morning, so I'm getting my fair share of pool exposure. I need to find time to clean the house!! I could get a university swim pass to help with the neighbor situation, but then a whole new set of problems would arise. Argh. I need to set up a schedule along with some rules.

Monday, June 22, 2009

Update: Blue Cross Ordered to Pay for ABA in Michigan

Author's Note: This is an update of a post I wrote back in May.

Thank goodness for Facebook and Talk Autism (Facebook), a group I get updates from on my home page. Having just arrived home from vacation after a week of no internet access, I would have taken longer to find this link, which is an update containing good news about the lawsuit against Blue Cross/Blue Shield. The only criticism I have with this article is that the reporter called autism a disease. I prefer to use the word condition because a negative message is attached to the d-word.

Otherwise, the reporter did a good job reporting that the insurance provider, Blue Cross/Blue Shield (BCBS), has been ordered to pay for Applied Behavioral Analysis, a treatment that many families with autistic individuals pursue. In the article, the reporter defines the therapy, summarizes why BCBS hasn't paid in the past and explains the difference between the lawsuit and the legislation that is going through Michigan's state legislature. This article goes into a little more detail than the ones I usually find in The Detroit News. However, the latter article does offer up quotes from Gerard Mantese, the attorney for Christopher John's, the father who pursued the lawsuit back in May 2008 through the U.S. District Court.

Here are the last two paragraphs from the first article mentioned as found on

"As with many developmental and psychological disorders, autism isn't covered by most medical insurance plans. Depending on the severity of a child's autism — which varies greatly from case to case — intensive speech and developmental therapy can cost nearly $100,000 per year. In Michigan, where the instant suit was filed, the state House has introduced two bills mandating coverage for diagnosis and treatment of autism-spectrum disorders, including Asperger Syndrome and Rett Syndrome. HB 4776 applies specifically to plans issued by Blue Cross; HB 4183 applies to all other insurance companies.

"In the settlement, Blue Cross agreed to reimburse the families of more than 100 autistic children who paid for their own behavioral therapy over the past six years. Included in the settlement are families covered by a Blue Cross policy who never actually submitted a claim."

Looking into the future: I'm guessing that most of the families who pursue ABA live in urban areas like Detroit, Grand Rapids and Lansing. Those of us who live in rural areas have a difficult time finding a local provider of the therapy. Perhaps, if more people can pay (using insurance) than more providers will pop up in less populated areas of the state. One can only hope.

Friday, June 12, 2009

Essay: Transition Time for a Mom

Image: Parks are a saving grace for many families during the summer, when school is out. This is the best one I could find on the web of Timbertown, which is at my son's favorite park. We'll go there more than a few times this summer! There are a lot of hidey holes in this structure, which my son with autism seems to really like.
Image: I recently spent four hours at Chippewaters Park on a field trip with my youngest son's Kindergarten class. My little guy had a ton of fun the whole time. My oldest one, with Autism Spectrum Disorder, would have lasted about twenty minutes at this park--his least favorite in town. It has a play structure, but the structure only has one hidey hole (seen above--my little guy at far left), which is probably a bit too popular for my guy with ASD's liking.)

Image: This least favorite park has some wide open spaces that encourages both structured and unstructured play. My oldest really does like to blow bubbles, but I don't think he would blow bubbles for more than an hour straight like my little one did. At times, C2, pictured above, would be surrounded by children popping his bubbles. He thought it was great fun.

Image: This is the second favorite park in town that we usually only visit when their dad can come with us. This park has trails, from which the river can be accessed (some safety concerns here). It features some of the the most beautiful scenery in town, but it only has a small play structure at the trail head.

Transition Time for a Mom

We are currently transitioning from a school to home schedule now that school has let out for the summer. Out of the four of us in my family, guess who is having the hardest time adjusting? Ok, I'll make it easy for you. It's me. I'm a stay at home mom that got a little used to having extra free time to finish up projects, etc. while both boys were in school. The new schedule doesn't affect my husband much since he works during the day and the two boys are pleased about being able to stay home all day during the summer.

At the writing of the post, it's twenty minutes until 9 a.m. and both of my boys are still in bed. They like to sleep in. (I know I'm one of the lucky ones, because my guy with ASD has no trouble sleeping!) I'm having no trouble adjusting to the morning routine. It's kind of nice. The mornings fly by. It's the afternoons that can be difficult. As Dr. Tsai (a retired developmental pediatrician who has an adult son with ASD) pointed out during a conference he spoke at, it's the unstructured time that can be the most problematic for people with ASD. (Well, some kids can have trouble during a structured school day, but for the most part, the doctor's point made sense.)

We have a basic routine for morning and evenings, but afternoons are wide open. In the past this time of day has dragged by for me. I'm most likely to have a conflict with my son during this time of day. Although it's not always possible, it helps to schedule an activity like going to the park.

Even when he was a baby, my son with ASD would get cranky if we stayed in the house too many days in a row. It's not as big of deal as it used to be because my son can go out for a short period unsupervised as long as I leave my windows and ears open! He likes to ride his bike or play with the neighbor kids (which is a little bit nerve-wracking for me!)

I think my son needs the stimulation that going outside or to a different indoor location provides. The trick is to go somewhere where he doesn't get a sensory overload. We also have to work around some of his other quirks. For example, the three of us can only go to one of the three parks because that is where my guy behaves the best. A visit to one park nearly always leads to meltdowns. The meltdowns at that park haven't been due to sensory difficulties rather than a matter of his expectations. There isn't a whole lot to do there, and he likes to take his shoes off and wade in the river. This isn't always feasible.

The favorite park has a humongous play structure with quiet places to hide if desired. There is also a slide park nearby with seven or eight different slides to go down. I can usually take both boys there by myself with little difficulty. On Aug 11, a spray park will open at the favorite park. My town doesn't have a swim pool, so I'm hoping this will be a welcome addition rather than "an attractive nuisance" that inspires behavior issues... We'll see.

If my husband is with us we can go to the second favorite park. This one has a lot of trails, some of which run right along the Chippewa River. So with two boys it's easier to have dad. I've tried going to this park with other adults, but my son tends to listen to his dad (who also has a calming effect on our boy) best.

Max's place, a summer arts day camp for children with Asperger Syndrome or mild autism, has been cancelled this year, so there are two more weeks to fill than we had the last two years. Our options in my hometown are a little bit limited, but we'll manage somehow. In Michigan there is a state law that requires schools to open after Labor Day, which falls on Monday September 7 this year. (This law was passed to encourage tourism in our upper peninusla).

We have three vacations planned and my guy will go to a summer camp for special needs kids for one week. So minus the camp, the vacations, weekends, and one planned outing, I have approximately 40 afternoons (from today, June 12)to muddle through. Hopefully we'll have more good days than not.

Friday, June 5, 2009

Essay: Growing things upside down

Image: The green cylinder hanging from our flowering Crab tree over our back patio is a Topsy Turvy planter, which contains a tomato plant.

Everything I knew about children and development went all Topsy Turvy when I had my oldest son with autism almost eleven years ago. At the age of six C1 was diagnosed with Autism/pervasive development disorder/not otherwise specified (PDD-NOS). He's part Aspie (short for Asperger) and part Autie (short for autistic).
Image: my son could recognize all these logos by age 4!
I'm learning more about autism and how to help my son all the time. One thing I learned long ago is that many children on the spectrum appreciate logos, slogans and television advertisements. As a tot, when C1 communicated, it was usually in regards to logos, in particular fast food logos.

I remember he cried at age two when I passed a McDonalds. I was driving, but a friend looked back at him and discovered what was wrong. He was pointing at the Golden Arches! He wasn't talking much at the time, but in time I took comfort that he could utter Burger King in the appropriate context. Later, I discovered that an unusual love of logos and television ads can be (but not always) and indicator of autism.
Image: Billy Mays

It shouldn't be surprising then that my son (actually both sons and the husband) really likes Billy Mays, a TV advertising guru. What is surprising is that we only own one of the items he has pitched. It's the Topsy Turvy, of course. And of course, it was the husband who went out with the two boys and came back with the goofy planter.

Image: Clip Art depicting photo tropism. Our topsy turvy plant is doing OK. Due to a desire to keep the plant in a deer-free zone combined with a lack of hooks and tech skills, we hung it from a tree. It's a bit shady there and the plant is growing a bit crooked as it bends and twists to get more light (photo tropism).

I'm continuing to learn how to connect with and enjoy being with my son. Now that growing season is here in Mid-Michigan, I've discovered that he really enjoys gardening. When his little brother wasn't around to "help" and (aggressively try to nudge his way into doing all the fun planting tasks), we had a great time planting tomato plants (most of them right side up!), begonias, broccoli, egg plant, and pumpkins.

Planting things with the two around was fun, but it was even more fun with just the older guy. I can find all sorts of ways to relate to C2, but it is more difficult to find activities C1 enjoys. I have found that the smaller the group, the easier it is for him to participate. A group of two is just perfect for C1. He gets the encouragement he needs without the distractions caused by another child.

C1 and I can only find the time to do one-on-one activities together occasionally because his brother is a "me too" kind of guy. I guess that is OK, because the social world operates with group cooperation. Social skills like turn taking and sharing are best learned when there is more than one child in the group. It also helps when the group is mixed with special needs children like C1 and typically developing children like C2.

That is one of the reasons why I allowed C2 to join in after C1 and I planted a few vegetables and flowers. I also pointed out to C1 that we didn't want to hurt C2's feelings. We've been sharing and taking turns since C2 (now age 6) was old enough to join our activities, so it wasn't too difficult for C1 to share the planting duties and my attention. Actually those two things were a little harder for C2!

Image: C1 gets pulled up to the Fowler Center's Tree House. This photo was taken almost two years ago. He can now use the rope ladder that can be seen behind him.

As far as C1 goes, I plan to keep nurturing him (along with C2). Nature put him in the shade a bit, but I will help clear the way so that the sun can reach him. My husband and I plan to keep giving him all the "water" and "food" he needs (both literally and figuratively) so that he can keep growing.

This summer he'll get opportunities to go swimming, go to a special needs summer camp, ride his bike (a newly acquired skill), ride a horse (proud equestrian program), go to an amusement park (a planned trip to Cedar Point), a county fair, and maybe a zoo or two.
He'll get to play with some neighborhood children (I'm always nervously holding my breath when he's outside with other kids--most of the time he does OK.) Later this summer we'll be picking tomatoes, cucumbers and other veggies. If we find the time and energy (mom's energy), we'll also go blueberry picking. We also have a couple of mini vacations dotted throughout the summer. My guy loves to go on trips and does pretty well riding long distances as he loves to read road signs and spot familiar landmarks.

Image: This cover photo isn't from the set of books I ordered (it was the Magic Tree house series). However, books from Roger Hargreaves might be able to help children on the spectrum as his series focuses on topics like being noisy versus being quiet or messy vs being neat. Mr. Topsy-Turvy is one of my favorites--probably because I can identify with him as my son used to speak in a backwards (wardsback) sort of way, just like the character.

As far as academic development during this most unstructured of seasons goes, I did buy a few challenging chapter books and I might sign both boys up for the reading program at the local library. I'm also hoping to help them both with math and fine motor skills. I have the best intentions in the world. I just hope my "teaching" plans don't all go Topsy Turvy!!