I can instantly conjure up a smile and a giggle at the thought of my husband and I “galloping” through the house with Elise as a newborn. What? You didn’t gallop like a horse with your 2 week old held tightly to your chest? Well, neither did we... at least not with our other two healthy children. Much of what we did with Elise, our middle child who was born with severe brain injury, was not to be found in parenting books or recommended by pediatricians. These visions of the earliest days with Elise always make me laugh, because we were in the beginning stages of a long and drawn-out discovery of what was best for our child. We tried many things that seemed silly at times, but did actually work for her most of the time. She had a major injury to the part of her body that doctors know the least about. Her brain. This forced us, as her parents, to research and try out dozens of therapies, theories, and opinions of all things “brain injury”. (I am excited about writing a post in the near future about many of our experiences with alternative therapies--some that were worth the effort, and others that were not.)
The galloping that we did with her through our house was started immediately after bringing her home. Don’t picture her jolting around and experiencing a shaking sensation. It was more of a light galloping motion, said to be useful in helping her body “organize” and to regulate her sensory system. We were learning about how vestibular input is one of the core elements of sensory integration therapy, something that she desperately needed, and still does.
If you’re not familiar with the vestibular system, it is the sensory system that provides the primary input about movement, balance, spatial awareness and positioning. It helps us prepare our posture, maintain our balance, properly use our vision, calm ourselves and regulate our behavior.
(http://www.especialneeds.com/swing-therapy-and-sensory-intergration-for-special-needs-children.html)
(http://www.especialneeds.com/swing-therapy-and-sensory-intergration-for-special-needs-children.html)
The vestibular system has strong neurological connections in the brain and is a major organizer of varied sensory input. This system is considered the most influential sensory system and has tremendous impact on one’s ability to function daily. Directly or indirectly, the vestibular system influences nearly everything we do. It is the unifying system in our brain that modifies and coordinates information received from other systems, and it functions like a traffic cop, telling each sensation where and when it should go or stop. (http://nspt4kids.com/health-topics-conditions/vestibular-processing/)
Not only is Elise deaf, blind, and not able to manipulate her body through space, (get up, walk around, use arms and legs for purposes), but she also suffered from a need to constantly stim, or create her own stimulation that is lacking because of her disabilities, as well as her sensory integration disorder. (I will write more about her lovely stimming behavior soon...)
Elise craved movement from the very beginning, setting us on a path of figuring out ways to constantly and safely satisfy her hunger for movement. One of the first “therapy” related activities that we learned about and tried out on Elise was simply the use of a swing.
As a baby, the traditional infant swing didn't provide enough intensity for her.
She always enjoyed sitting in our laps while we would swing, but was never quite getting "enough" out of it.
We even tried to prop her up in an infant/toddler swing a few times with towels and supports, but it was a mess and did not work...though it made for a cute picture.
So, we compromised. My husband and I would simply hold her in our arms and swing her about. Up, down, side to side - always with plenty vigor. These were the times that we would get the most noises out of Elise. Good noises. Happy noises. When our arms became too weak for her growing body, we would each hold one end of a large blanket, creating a “blanket swing”. We would place Elise in the middle and give her a ride.
In therapy sessions at the facility that we used for OT and PT, they would use a platform swing like this one. Even when Elise was a little baby, they would sit me on the platform with her in my arms. They would swing us around, and then wind us up and let us go. She loved this, and would actually gain some improved head control during and after these sessions.
As she continued to grow larger and heavier, we eventually purchased a Jenn Swing for our home (with help from deaf/blind services in our area...those suckers are expensive!)
Just to give you an idea, the support bar alone is $99.00. You need one of these to put it in a doorway. (If you can afford it, or can find help from organizations that serve children with disabilities...GET ONE OF THESE SWINGS!)
We started with the swing in the house. There was only one doorway that would work, and it eventually became a pain, constantly blocking our way from the kitchen to the dining room. So, my husband moved it outside with the use of a metal frame that it came with.
(**Here begins a set of pictures that I had to resort to using, because I don't have any direct pictures of this swing in our backyard. Let's play I Spy... Just look past whatever is going on in the foreground, and try and find the swing!**)
After moving the swing outside, we initially hung it from a big tree in our yard.
For more stability, we ended up putting it up on the frame that was purchased with it. It worked well.
(Pay no attention to the baby in the cowboy hat and his grinning mother!)
Again, ignore wet and crazy Lane, and see the full swing and frame in the background.
Once we moved into our current house, the swing and frame were used less and less. Elise was beginning to intensely slam her head against the hard plastic in an attempt to self-stim. She no longer felt comfortable in it, and we needed to find a better option for her.
Enter the Net Swing!
The next swing we purchased was the net swing. This would help out because she couldn't hurt herself in it by banging her head or arms against a hard surface. Unfortunately, this is the most use we got out of it...
Lane obviously loved it, and made good use of it (although kind of dangerous when looking back...). He would create acrobatic shows on it, pretending he was in Cirque du Soleil!
It proved hard to get Elise in and out of the swing because of her tone. Her hands, feet, fingers, and toes would get caught up in the netting, and she always seemed to be fighting it while in it.
Third Time's the Charm!
My mom gave this Algoma Hammock Chair and Stand to Elise for Christmas. It is not meant for special needs kids, but has worked extremely well for Elise. The frame always gave us trouble by lifting up off the floor each time we would push her in it. So, Chris hung it from some overhanging beams over our patio in the back yard.
Her legs would hand out, making it easier for her to fall out using her tone, so...
We just tuck her legs in like "criss cross applesauce", and it works perfectly!
This swing is super easy to put Elise in and out of, making it an activity everyone can do with her (not just strong Daddy!) This is Ladawn, our helper/caretaker with Elise this summer.
Just Ask!
A few years ago, Elise's caregiver, Jackie, did something wonderful for her. We were in the process of selling our house, so Elise was spending some time over at Jackie's house while ours was being shown during the day. Jackie called the city and requested a special needs swing be put on the swing set in the park across from her house. In a matter of days, it was there...waiting for Elise to swing!
This swing was put in several years ago. Elise has grown so much, we may have to ask for the next size up.
Ladawn, our helper/caregiver we had this summer, surprised me when she called the city and asked for a special needs swing at our neighborhood park.
Now, when we go to the park, instead of doing this...
...while her brothers do this...
...she can NOW do this!
(I would have never thought we could have these wonderful swings put in these parks. Turns out, all we had to do was ASK!)
A Mama Can Only Dream!
This awesome swing has been on my radar for many, many years now. It is an automatic swing. No need for pushing! Just put her in and enjoy...
This nifty little device takes the place of a busy mama's hand, and keeps the swing in motion. You gotta love that!
One day, Ashley, one day...
For kids like Elise, the swing, in various forms, is an essential part of strengthening their vestibular systems. We have been exponentially blessed to use, own, and borrow swings that have added much pleasure and therapeutic quality to Elise's young life!
