Bike Camp = Boy Joy

James loves bikes and being independent. Even though he adores his Christmas bicycle from several years back, he hasn't been riding it as much as we both hoped. There was the matter of escaping me in the park, where we'd gone to ride (and then not wanting to ride back) and the fact that his low muscle tone makes bike riding both a challenge and a safety concern.

Cone Zone for Cycling Without Limits

Lately, he's grown so fast he's probably outgrown his original bike. When he persists in riding it, the training wheels start to bend up, he's so big now. I have to constantly stop him to tighten the bolts. His balance is way off too, and his hand-eye coordination not steady enough to make bike riding really confident. What's a kid (and parent) to do?

Enter Cycling Without Limits, a wonderful summer bike camp program put on at Sonoma State University, in partnership with Dr. Elaine Hughes (Kinesiology Department) and some of her Saturday Sidekicks crew, and Ann Elias from Cerebral Palsy, and some wonderful volunteers who've come up with some truly inventive ways to get special needs kids and adults up and biking.

Specially modified bike for campers

James and I attended the first class yesterday. Oh my heavens, the look of pure joy that lit up his face! As a parent, you live for these moments - they are so worth what it takes to get there.

He had trouble getting started, fighting putting on a helmet and riding a new bike. Before long, however, his team had figured how to get him moving. One buddy the special rear handle to guide him around a track in the large gym while another ran backwards in front of him, calling for him to come catch her. Off her went! After three laps, he was able to start and stop on his own power.

Getting used to things

Look at him go! I had trouble getting him without a blur.

Thank you, thank you! Go, James, go!

Activities for Special Needs Kids

This has been a good year for getting James more active. Although he has some issues, such as low muscle tone, uneven fine muscle control in his fingers, and vestibular disorders, James is a guy on the go. He likes people and being able to play sports is becoming more of a requirement for him to participate at recess and social occasions with others.

So we love it when we hear about programs for kids with special needs. Any helpful boost we can get for our kids is an investment that pays rich and diverse dividends. Here are some programs we've used over the past year:

Healdsburg Wonder League

A non-profit organization that runs a mini baseball league designed for children, ages 4–19, with special needs. Their first game is this weekend and it's not too late so sign up for this season! Find out more on their website (http://wonderleague.org/) and come on out to cheer on the Players and their Buddies. James and his sister have enjoyed two years with this great program. Our daughter learned to hit a pitch, and James has actually improved his throwing skills. Here are some posts about our experiences.

Saturday Sidekicks

We've had some fun Saturdays down at Sonoma State. The Saturday Sidekicks program has truly made both kids excited about being more active. It's nice to have some focus time too where the kids and their university sidekicks join in a circle to sing and try a group activity. The energy is high and the kids get a chance to do outside of normal play, such as ride a plastic scoot, get rolled down a ramp while inside a tubular mat, or ride on a platform swing. Being pulled on a blanket while sitting in an inflatable raft is novel, as is having a big cardboard box to hide out and giggle inside. We sure hope to participate in Saturday Sidekicks next year!

Town of Windsor Parks and Rec

We've tried two programs, with gratifying success. Half days of summer camp sessions and group swim lessons. For both, I've gone in person to the office to talk about James and his needs. At first, they were willing to give it a try, with the clear condition that the counselors were not 1-on-1 aides and that if there were too many issues for either of us we'd withdraw James. Amazingly, issues never came up.

Instead, with the summer camp, his verbal abilities soared, and he got into crafts and enjoyed play times. He loves wearing the camp t-shirts all year long. At the talent show last summer, he insisted on performing a song learned at camp on stage, solo, with a microphone. I heard he was a fun act to watch. I have strangers waving to me now at the Town Green, asking me to say hi to James. We remember the summer camp programs with great fondness.

The group swim lessons for kids were an important developmental milestone. I finally felt James was comfortable enough in water and group dynamics to get something out of a class and would not be too much of a distraction. It was a very good start and we'll be doing more this year. He even started to float on his back and jumped in at the last class, getting his head wet: victory over sensory issues!!

New to try this year,

Cycling Without Limits

James is eager to try and ride his bike without training wheels, like his big sister. His balance is rather precarious, so we haven't gotten there. Meanwhile, he is so big he is outgrowing his beloved Star Wars bike and bending the training wheels. Here's hoping both kids will be 2-wheeling it by Summer's end. We heard about the Cycling Without Limits program by participating in Saturday Sidekicks, and I am already looking forward to June.

Speaking of being physically active and programs supporting kids on the autism spectrum, James and I are walking this Saturday in the North Bay Area Walk Now for Autism Speaks event. Please join us in person at the Windsor Town Green or consider supporting us as we walk to raise awareness and funds to understand and create resources to deal with Autism.

And ... Boom! It's Summer

Well, the last 2 months just flashed by. New crisises. New accomplishments. Heart aches. Transitions. And a truckload of paperwork, appointments, meetings, and IEPs.

Welcome to Summer 2015! Less worries on the childcare front, but plenty of stress to go around, none the less. Some summer programming. Some prepping for the school year to come.

• Summer school is back, and it's returned to 5 days a week, instead of 4 like last year. I am actually happy they are not doing the free breakfast or lunch, as (1) James did not eat the food and (2) it created so much noise in the outdoor eating area that he went to pieces. 
• We are going to try group swim lessons again with our local Parks and Rec -- I have really missed that summer tradition of me waiting poolside during the swim lessons. 
• I've also signed him up for at least one week of morning session of camp (Wacky Water Week) through Parks & Rec. This is the last year he can do this, so it's bitter sweet.
• Plus: Bike camp at Sonoma State University, through United Cerebral Palsy! James did a good job two years ago and hopefully this year will be just as great.

Meanwhile, things to work on: One is related to Behaviours. Namely, pulling down pants. James keeps doing it. We are all on him about it, trying to not browbeat him. We've pulled consequences, time outs, wearing belts -- it's not working. And the Behavourist our HMO assigned us? Worse than useless. Another exercise in extreme frustration and mental torture via email, paperwork, and endless intake sessions capped with "sees no need for behavioural intervention at this time."

The pants down activity is the latest in the saga of Can't Wear Jeans or Pants with Zips & Snaps, colliding with ongoing toileting issues. Huge win: regularity is the new norm! Not so great upshot: obsession with toileting and the bathroom. And pulling pants down.

I am looking forward to a break from the school grind. My work schedule has shifted, so that I am off by 2:30 in the afternoon. It feels like I am getting a summer vacation this year, 3 hours a work day!

What Hit Me (Again)?

Crumbs. Just dealt with an unexpectedly busy week last week (summer camp in morning, bike camp in afternoon, and finally driving Big Sister to swim lessons after dinner), some brick walls with James' stamina, and a busy weekend on the River/Father's Day/Hot Air Balloon festival ... and we're crashing an burning this week, so to speak.

I've been applying for jobs and trying to catch up with house stuff that got missed while I was one the road so much last week/end. All the emailing and paperwork got my heart racing. Sorting piles of clean laundry periodically felt therapeutic. This week, summer school still takes up James' mornings. Big sister's swim lessons are over for now, but she had a 3-day computer animation class in the middle of the morning. The first day did not go well. Then ...

... she got sick. I got a panicked call from home while I was trying to get out of the house and take a walk (because respite care never showed so I did not get a break as scheduled), and was soon in the car with my daughter, advice nurse on the phone as I tried to figure out what was going on and get her seen by a pediatrician. It's not rocket science and I don't want my daughter suffering but dear Lord, it was one of those times where it feels like life's merry-go-round has taken on a sinister aspect and it's not stopping when I need it to. I just wanted to take a walk, be quiet for an hour, and breathe. Nope - not gonna happen.

Turned out to be croup. Now James has it. As I was driving my husband to an appointment and him to school this morning, he started complaining "I have a throat!" and then had a glorious melt down in the car. Gah! Well, at least I know how to treat this, thanks to the advice nurse and doctor's appointment for Big Sister: "milk" (ibuprofen) to calm his "bubbling throat," steamy time in the bathroom, followed by cool air, and lots of liquids.

Trying to call him in sick to the summer school program, however, was a byzantine labyrinth of voicemail hell across 2 facilities. The one person I actually could reach told me that after signing kids up for summer school she "washed her hands of the whole program." Um, yeah. Thanks for all the help.

Have I mentioned that I've been fighting this virus off? Yeah, that's been going on too.

Oh, and crankiness? Check and triple check.

We did get respite yesterday afternoon. My husband and I saw a movie. I still need more - I can smell my brain short-circuiting. Thank goodness the weekend is soon!

Special Exposure / Wordless Weds: Pirate Chicken

At James' bike camp, all kinds of motivators are used to encourage the kids to keep working at pushing their pedals and keep moving forward. I saw visual boards, dolls, and running buddies used to great effect.

There were other items available for use, which served as distractors for those who were in need of a diversion to discharge before refocusing. James latched onto this little beauty with glee:

What is that thing?

A rubber chicken. A pirate rubber chicken.

It really worked - know why? It squeaks when you squeeze or shake it. Arrrrrrrgh, Matey!

There he goes, off to the right. He had his fun before getting back on the bike.

For more images from the heart and to share some of yours,
visit Special Exposure Wednesday at 5 Minutes for Special Needs.






               and ... Wordless Wednesday

Two Wheeler

Look, mom, no training wheels!!

Big progress! He had the hugest grin on his face.

It was brief but James did it a couple of times yesterday at bike camp. So exciting!

Wistful Vista

We have a sleepover play date in progress for James' big sister. It seems to be a success, with much giggling, experiments with makeovers, and zany turns of speech. Not a whole lot of sleeping took place last night, but there was a protracted bedtime reading session that covered both Harry Potter and Junie B. Jones (Harry's 5th year at Hogwart's is not very helpful reading when battling homesickness, just so you know).

Pop quiz: name this playful duo.

Both girls have been cheerful to James, and he's enjoyed having another kid in the household mix. I do notice, though, that he has been watching the proceedings with a wistful eye. He would dearly love to have a play date of his own. Even though James is a friendly, playful kid, I have had a very hard time getting play dates for him. Many times, parents will say okay and then never return my calls. When I can connect with other parents, our busy schedules often compete, and play dates fizzle.

If James is with other kids, he gets very excited, but does not know what to do. His speech delays and difficulties makes it hard for his excited bursts of speech to be understood -- even I have to guess what he means at times. We are working on bike riding skills. He's got the turn-taking down, but getting him to focus and stay with a game is really difficult. Just a couple of weeks ago, his summer camp counselors tried to get him active in a game of line tag, but he just wanted to watch.

I've tried playing with James, to help model what playing with someone is like and see where he might get "stuck." He can be a lot of fun, especially with hand puppets, singing, and dancing. At one time he could play Red Light/Green Light for several minutes. We had less success with T-ball, badminton, and basketball/soccer. Play dates at a playground tend to work. I've read articles and talked with therapists -- helping our spectrum kids have successful play dates is a moving target.

Back to this weekend -- I had to make a quick trip to the store, and asked James if he wanted to come along; he did. On the way to the store, he asked if he could see his friend across town, and stop by his house. Knowing this family pretty well, I said okay, but I'd have to call first. Luckily, it all worked out, and we were welcome drop-in visitors. James got to see his friend, visit with people he liked, and play with their house full of kids. It was nice to see him taking turns on the trampoline and watch one kid encourage him through the rules of their made-up game. Then James started trying to sit on his head and ate a dandelion. My cue for us to go. Heavenly days!