Enter Brian and Michael, diagnosed with Down syndrome at birth. We were told to expect their development to be be slower than “typical” children. So, we redoubled our efforts to support their development.
Most children take their first steps between 9 and 18 months. The average age for this milestone in children with Down syndrome is somewhere between 2 and 3 years old (24-36 mos). Jill, the boys’ Physical Therapist, used a half rubber ball mounted on a heavy plastic platform to simulate a soft surface where, she told us, balancing helps stimulate the muscles used in standing and walking. She suggested we help Brian and Michael by standing them on our king-sized mattress… being very careful that they don’t fall off. Definitely doable, but not as easy a task as it sounds. In thinking about the dynamic affects of a dynamic surface, we went out and purchased an 8 foot round trampoline, complete with safety net, and assembled it on our indoor balcony. Instantly, Brian and Michael [and Olivia] had a wonderful and safe play space with a dynamic surface that promoted standing and walking. They could be in there alone, with each other, with me or with the therapist… consistently using those otherwise underutilized standing and walking muscles. Brian and Michael took their first steps at 14 mos. They might have done so without the trampoline… but I believe it helped. We also believe that this “tool” has improved their balance overall and hastened their ability to jump and run as well.
On another occasion, Corinne, the boys’ Occupational Therapist, noticed a characteristic of the boys’ grasp that generally translated to a weakness in the upper body/shoulder region. I hearkened back to my gym days and recalled the machines and movements that targeted the muscle groups in my shoulders, upper back, neck and arms. Then, I thought about play situations where a child might use those muscles. With my husband’s permission, I purchased some hardware from “Ace, The Hardware Place” and installed heavy-duty hooks into the main “microlam” beam in our great room/kitchen ceiling. (Note: I chose our main micro laminated beam because it is 2″ x 12″, has extra support and is stronger than a standard wooden beam.) I brought the trapeze bar/rings combination toy in from the kid’s outdoor swing set and hung it from the hooks. The boys pass these rings hundreds of times a day, being right smack in the middle of our living space. And, every time they pass, they grab on, pull themselves up, swing back and forth, spin and perform other gravity-defying acrobatic moves. Within 2 weeks, the weakness our OT had seen was gone. She was so amazed at the boys’ significantly increased hand and arm strength that she recommended this highly effective indoor apparatus to the parents of other children she worked with. She was surprised when not even one other family chose to implement the idea. Later, when my sister suggested we move the rings to the basement ceiling so that we could rearrange the furniture in our great room to be more aesthetically pleasing, we declined… Knowing that part of the effectiveness of the rings/trapeze is it’s accessibility and consistent use.
Recently, the boys’ preschool OT said writing on a vertical surface, such as an easel, is good for handwriting development. Well, we’ve already addressed this by integrating vertical writing surfaces into the design of our home. Our hallway/entryway has 3 large, framed squares that resemble wainscoting, painted in deep green chalkboard paint over a heavy coat of magnetic paint. In a nearby bottom drawer (accessible to the children) are large- and small-grip, round- and pencil-shaped colored chalks as well as various buckets of magnetic shapes, letters, jungle animals and dinosaurs, all for use with the chalk/magnetic boards. And, as an added bonus, to promote their healthy self esteem, 3 framed bulletin boards top the chalk/magnetic boards where we proudly display each child’s most recent artwork. With much fanfare, I change out this breathtaking and public display of their creativity on a regular basis to help them take ownership and feel proud.
To further strengthen their core and abdominal muscles, we can change out the rings/trapeze bar with a disc swing. Holding on tightly to the center rope strengthens their bodies’ core muscles and the vertical positioning of their grip on the rope (vs. the horizontal position used for the rings and trapeze bar) is a good OT exercise, working different muscles in their hands and arms that are useful for writing. And, keeping their legs tightly wrapped around the disc so they don’t slide off presents more opportunities for building stronger hips and leg muscles.
Additionally, we have 2 different, interchangeable swings that hang from the exposed rafters in the children’s bedrooms — the standard child’s bucket swing and an oval-shaped hammock swing we received as a wedding gift. Either swing can help address any feet-off-the-ground/swinging sensory issues my kids might develop (they don’t have any now) and the latter is more than big enough and great for rocking a restless child (or parent) to sleep. We have a slide on each floor of the house and encourage not only the standard use — climb up and slide down — but also walking up the angled slide surface which is a wonderful leg strengthening exercise (picture severely up-hill walking on the treadmill). To assist with one-foot standing, I pull the vacuum cord out of the canister and have the boys stand on the button to retract it. Then make them switch feet. Currently we also have secured a 6′ climbing wall to the top of a 4′ tall fence in our driveway. The boys climb up and down after school nearly every day on their way from the car to the house. And, instead of carrying them or plain old walking into or out of their school, we do the “up-down walk” where they take one step up on the curb and the other down in the street (obviously, I’m on the outside keeping them safe). Doing so on the way in and out of school, makes them use both legs/hips equally and helps strengthen their weaker sides. All of these things make exercise and therapy more fun… so they love doing it.
Our most amazing effort yet, (still a work-in-progress) is the backyard tree house on a 12′ x 16′ platform. I designed and my husband is building this incredible structure. 7′ off the ground, when completed the house will have 2 split doors, 2 swing-out plexiglas windows and a sitting/sleeping bench (with twin trundle bed beneath) along with a fold-from-the-wall work table. There’s a standard-rise stairway (so adults can participate) that’s only 24″ wide with ever-so-slightly lower-than-average rails so the boys can practice going up and down stairs holding onto either/both side(s). The stairs turn at the top and again halfway down (1-step down to the first landing, turn, 4 steps to the next landing, turn, and 4 steps to the ground) so no one can fall down a flight of stairs. There is a 14′ scoop-style wave slide and there will be a 5′ x 12′ large-gauge climbing net set at the same angle as the slide so no one can “fall” (rather they’ll roll) down to the ground. These are each set on a separate railed platform that is a step down from the main platform, again making sure that no one accidentally ends up in this area. And, finally, there’s a locked gate that will access a 70′ zip cord complete with a handle and sitting ball that will end on a cushioned platform very near our back door. Heaven on earth for our kids… And, they don’t even know they’re doing PT and OT while they play.
I can go on with other unique implementations and activities but you get the idea. I am driven to think outside the box when it comes to fostering my children’s development. My boys are now 3 1/2 years old and are in the borderline-delayed range for their physical and mental development. It’s possible they would have developed just as well had we not done all these things… But, I’m certainly not willing to take that chance. Not now nor going forward. I will continue to do everything and anything I can to help foster my children’s development. The boys’ therapists are thankful that we’re such involved and out-of-the-box thinkers when it comes to helping them and our children. And, at the very least, when my children are all grown, I will be able to say I did everything I could to help them become the awesome and capable people I am sure they will be.