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.

Pool Party Afternoon

Saturday Sidekicks went out with a splash! They threw one nice pool party this afternoon at Sonoma State. About half the pool was sectioned off for water play. Lots of the Sidekick buddies were already in the pool when we arrived, splashing and encouraging the kids to have fun in the water.

Beach balls and water polo balls bobbed merrily about. Floatie tubes helped the less confident to stay afloat. I towed James all over the pool for about an hour as he kicked, splashed, and yelled "Wheeee, a pool party!" over and over. His sister took off and swam like a fish all over the pool, with a buddy tagging along to monitor her progress and talk with her. James knew some of the kids in the pool, and we had fun hanging out near each other, and enjoying brief moments of connection and interaction.

Then the gigantic horse raft was brought out. Oh my. Most of the kids clamoured for a ride, often overbalancing and tipping over shortly after managing to get on top. Eventually, most kids had their fun, and climbed out to devour the pizza that had been delivered, poolside. A small dedicated group continued their water play. I got a shot as James did not want to get back in the water after pizza.

We hit the mid 80s and had a light breeze. It was perfect weather!

One last thank you and aloha for this year, Saturday Sidekicks!

Special Exposure / Wordless Weds: Fun Finale

Last weekend was the last of the Saturday Sidekicks sessions for the year. We plan to come again next year. It's been such a good experience, getting both kids out of the house and moving early on Saturday mornings. Not only James enjoyed it, his big sister was warmly welcomed and enjoyed using the scoots and time with the university students.

A huge thank you to Elaine McHugh and all the volunteers - Kinesiology, and the Saturday Sidekicks program, rocks!

He ran straight for the jumpy and stayed there. I remember when the generator noise made them intolerable for both he and his sister. There were many birthday parties where I watched my kids try to have fun at an inflatable jumpy-themed party from the outside. I don't think I'll ever get tired of seeing my kids enjoy them for reals.

Yowza!

Was that the 12th trip down, or the 20th? Who cares!

You want to see some happy kids? Keep scrolling!

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

Kangaroo!!

Kinesiology Exercise Programs for Parent and Child

When James was younger, we were lucky to participate in some great programs at Sonoma State University (SSU): the CATS program, Saturday Sidekicks, and Cycle Without Limits. 

Now the Kinesiology folks, who created the Saturday Sidekicks program, have a couple of new programs: Family Fun Run and At Home Exercises.

Neither James or I are up for running at this point, but paired exercises at home sounded great. I answered the email and we signed up. 

As this is a study in progress, I am going to keep it simple - we did some basic tests at the beginning for basic medical information and (for me) dexterity and mobility exercises. Now, each day at home, James and I together perform a practice and then coordinated exercise at home and take a photo at the end. The exercises are introduced by a video and a video game concept. 

Today's theme: Kangaroos!

Not gonna lie, it was fun. Stay tuned.

Catch-Up, With Links

First, I felt good reading this epilogue last week from Sunday. It helps restore my faith in humanity.

I wish I could find such follow-up for Paul Corby, but I can't. The best I can find is that he is still being denied a life-saving transplant because (in part), with his autism, he is perceived as less worthy to receive the organ donation and  transplant. He has now been turned down by both the University of Pennsylvania Health System and the Mayo Clinic. I am keeping Paul and his mom in my thoughts and prayers. I've had a taste of what it's like to not have access to the assistance needed to help a son. Here is a link to her petition at Change.org.

I still miss my uncle.

Saturday Sidekicks still rocks. I am sorry this coming Saturday will be the last for this session.

Don't just take my word for it, take a peek at the documentary.

We will get that paragraph on bats finished, we will!

The Tooth Fairy is taking hits to her Tooth Fund (big sister alone has had 4 in the past 4 months) ...


Meanwhile, out in the county, the ornamental plum trees are snowing pink, the Santa Rosa Plum has exploded into white, and the Bells or Ireland give us a heads-up to St. Patty's Day and Easter:

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!

Something New

We finally checked out a program we've heard a lot of good things about, but never actually joined: Saturday Sidekicks at Sonoma State University.

Oh, I can see why parents love it and their kids have a good time. It's a fairly simple premise, carried out wonderfully well. Parents bring children to a gymnasium, which is filled with mats, Hula Hoops, a climbing board, platform swing, teeter-totter, trampoline, and scoot carts with an obstacle course. They are met by college students who are assigned to a child and become their play/Adaptive PE buddy. Music, scooting, chasing, and shouts of giggling abound. Periodically, everyone is pulled back to circle time for a group activity and song.

James adored it, and his sister had a great time too. I just sat on a chair and socialized with the mom who reminded me it was available and gave us a car pool ride down there with her kids. What a great start to our Saturday!

New Year's Goals

Time to set some goals for the coming year 2015:

1. James needs to eat more to gain weight. Currently he is pushing 4' 11" and we're struggling to keep him above 60 pounds. He was 87 pounds last August. Not sure why he's decided food is evil. We have ruled out Celiac Disease and throat/stomach/upper bowel issues with an endoscopy. Which made James even more determined to Never Eat Again. Sigh.
       
2. Help James become more "regular." We're going to be trying biofeedback for that. In San Francisco at a Lucille Packard clinic once a week for the next 12 weeks. I'd say "shoot me now" but the truth is ... we are desperate for help with this.
        
3. Get James' speech back on track at school. It's pretty much not been happening over the past 2 months. Not happy about that at all. He needs help speaking. It's in his IEP.
   
4. Get Behaviourist help going. We're finally approved and not having to worry about hundreds of dollars in copays. We've started the intake merry-go-round. We need to finish it AND start the sessions!
   

                          Goals on a more normal level ...

       
5. Have James' birthday party BEFORE Easter this year. Bowling alley sounds good!
        
6. Send Thank You cards for Christmas this year (meaning for Christmas 2014 by the end of January). I know we all can do it. We should do it. We will do it!
         
7. Try to add Saturday Sidekicks back into our routine. That is one awesome program!
        
8. Breathe. Believe. Do.