Please Comment Here

Thanks to everyone who is engaging with this blog, sharing it with friends and family, and forwarding your thoughts and input to help me make it better.

Thankfully, some of you have provided input and feedback on the postings directly to the blog -- which really helps make it more informative and interactive for subsequent viewers. Please keep it up!

Others have emailed me personally; however, I have not yet been able to transfer your great thoughts and perspective to the blog yet. So...I'm once again encouraging you to COMMENT HERE DIRECTLY so more people can immediately benefit from your wisdom and experience on a particular topic/posting. If you would feel more comfortable doing this anonymously, that's easily accomplished--just check on the comment page. The most important thing, however, is for comments to be readily accessible straight off the blog so parents can benefit not only from my information, and also the thoughts and ideas is elicits from others.

Would you believe I'm vacationing in Chicago this week with John and the kids, and this is what woke me at 5am this morning? I really want to build this blog into a truly valuable resource for all kinds of kids, parents and families. Mind spins with idea sometimes, which I guess isn't all bad!

Thankfully, it's another beautiful day in the Windy City and we'll be off in a few hours to make the most of it. Hope you can, too !

Recreation for all Abilities

As Cyndi Lauper says, "Girls just want to have fun!"   Boys, too.  And we all know that's harder for some kids than others.  Finding physical activities in which our children can participate and excel in is tough, but there are all kinds of places available to help us.  Here are some good starting points:

Sailing -- Boston seems to have some great organizations committed to providing access to people with disabilities.  Andrew's Camp SFAH has adapted a small boat and uses it each summer.  Seating is key.  Kids love it.

Motor-boating -- We use a Tumbleforms chair to adapt our small Boston Whaler so Andrew can ride for hours and sit safely "strapped down." We bring the urinal so toileting is not an issue. We use a life vest with head support which he wears AT ALL TIMES.  He even goes tubing (very slowly) off the back in a round-rubberized model that enables an adult to assist.  Mom says, "Slow down!" Andrew yells, "Faster!"  Everyone loves that EVERYONE can participate.

Swimming -- Even with a good life vest specifically designed to keep his head up, Andrew cannot swim independently.  But we're working on it.  Special Olympics is a goal. Good aquatic therapists can help.  Great cardiovascular exercise especially.  Andrew has been going at least once a week (year round) since he was two.  Loves it.

Skiing -- We've been to Mt. Snow in Vermont and Crested Butte, CO. Most major resorts across the country have adaptive programs.  Mt. Snow even faxed Andrew's file to Crested Butte for us so they had all the equipment and instructional information when we arrived.  Fabulous. Recommend lots of hand and foot warmers, plus duct tape to help hold on to the bar/bi-ski. He loves it, but he gets really cold.  Lots of hot cocoa breaks!

Biking -- Freedom Concepts makes a great bike and I understand some organizations offer scholarships to help  pay for such things.  As he's gotten older, this has become something Andrew actually like to do more.  Unfortunately, it requires someone to walk/run behind him...so we can't use it for family rides.  Still looking for an affordable way to bring him along when the rest of us go out.  

Baseball -- Challenger leagues abound.  So many benefits to being on a "team." Andrew likes to drive his chair around the bases.  We prefer having able-bodied "buddies" push him in a manual chair.  They can also help him bat.  Several years ago, Andrew decided to stop playing so he could continue his theatre class on Saturday mornings.  We're okay with this, but it is great fun if you can make it work.

Jump-rope -- Wonderful with other able-bodied children.  We tie one end to his wrist and he can "turn" with a partner, while someone else jumps.  Instant inclusion!

Basketball -- We haven't tried it, but there are leagues for all abilities.  Andrew still enjoys playing "3-2-1 shoot" in the driveway.  A partner counts down "3-2-1" and then Andrew pushes the ball off his lap...it dribbles onto the pavement and the partner picks it up and shoots it.  If he/she scores, it's Andrew's point.  So much you can do with this, really.

Playgrounds -- Boundless Playgrounds rock!  Need I say more?

Wheelchair Races -- Now doesn't this look like fun?!?

What do you do to make sure your kids "get in the game?"

 

Smile Time

Last night for homework, Andrew had to compile a list of ten things that make him smile.  Here's what he came up with:

1. Having tag sales

2. Gift certificates to buy cool stuff

3. Posters of famous people

4. My brother Henry

5. Riding in convertibles

6. Laptop computers

7. Playgrounds

8. Restaurants

9. Watching "America's Funniest Videos" with my family

10. Going to the circus

For the record, we've only had one tag sale...which didn't make any money, but I guess it was more fun than I knew.  Nevertheless, this little exercise reminded me of how important it is to stop and recognize what makes our kids happy. It's funny to see what's on the list.  I think I'm going to ask our other kids to make one this week, just to enlighten John and me.  What are your kids smiling about these days?  How about you?

Special Needs Summer

February is here, and now it's time for Kris to begin obsessing about summer.  Specifically, how will Andrew be able to enjoy his "time off," but not regress in school?  Piecing together a summer camp experience, free time, family trips and school remediation is never easy.   Here are some things we've accessed over the years, which may be helpful to you.  If you're interested in something, click on the link and perhaps you can create something similar for kids where you live.  Or share your experiences with me and we can try to replicate somethinghere in CT that you've found successful: 

--Topping the list of successes for Andrew is sleep away camp, which he has enjoyed since age eight.  Yes, eight!  He spent a week at The Southampton Fresh Air Home, a camp for physically challenged kids located on Long Island (NY), and then "graduated" to their three-week-program at age ten.  As Andrew told me just last night, "I miss you when I'm at  SFAH, but it's good because I get to do things on my own."  Yes, I cried!  Wonderful time for Andrew's growth and development; great for the rest of our family to bond and thrive by enjoying things we can't do when he's with us.We all  love SFAH!

--Day camps have also been beneficial.  He started with a six-week-program at our local Jewish Community Center (which accepts children of all religions and abilities), and we identified a great male aide (college student/athlete) from Abilis (formerly ARC of Greenwich).  They bonded so well that we actually visited Kevin at college the following year.  Kevin and the other counselors adapted everything to meet Andrew's physical limitations, and worked hard to help Andrew develop friendships with the other campers, whom he remains in contact with today.

--Next we tried what Andrew calls "Cerebral Palsy Camp."  It was a local conductive education camp that employed two Hungarian therapists for an all-day, intensive therapy program that lasted six weeks.  Six hours of rigorous treatment, followed by two hours of computers and swimming at a nearby CP Center.  One of the therapists actually lived with our family for two weeks and my parents visited her in  Hungary.  (Are you seeing a trend here??!)  She was lovely, but Andrew hated it! He cried everyday and just seemed overwhelmed by all the physical demands.  They tried to make it social and fun, but it was just really hard for him.  We continued some of the conductive ed treatment over the next two years after school; however, we decided Andrew needed more fun and less work during our relatively short summer (10 weeks).

--Throughout the above summers, we worked with the school system to identify tutors with whom  Andrew could work on "off" hours. This enabled him to participate in camp and still gain valuable academic instruction to prevent regression.  After second grade, we decided to enroll him in our public school district's extended school year program.  He attended a grouped class for remedial math and reading instruction taught by a teacher he knows.  Four hours a day, supplemented with OT, PT and speech services (and then he did things with friends/family each afternoon).  We're glad we tried it with the district, but we opted to return to the tutoring approach for subsequent summers.  This really has provided more benefits to Andrew and helped him retain all that he's learned throughout the previous school  year.  Key is figuring out what your child needs (both instructionally and as a kid "off" from school for the summer), and then working with your school district to arrange something that helps meet those needs. Never easy, that's for sure.

--Something else we know about, but haven't yet participated in, is a camp experience for kids like Andrew and their siblings.  One of Andrew's aquatic therapists started it several years ago for a week in late August.  Everyone we know who goes there thinks it's incredible.  Check it out!

Lastly, we have hired local college kids over the year to help provide an extra set of hands with Andrew while I am scurrying about with the other kids.  This has always worked out really well.  I've posted "want ads" on college job boards for students studying OT, PT, special education, etc.  It's time-consuming and a little stressful looking for the "right" person, but always worth the effort.  Summer comes but once a year, right?  

Let me know what you do to make the most of yours.