When a child is born you worry about everything regardless if the child is born with a disability or not. In the end we find out its really not that hard, there are certainly no shortage of products out there today that make out lives tremendously easier. I mean take for instance the diaper genie, who would even know that you had a pile of poopy diapers sitting right out there in the open, no one, because this magical little product hides all that nastiness away behind its white plastic aesthetically pleasing exterior. It allows you to literally store poop so that you don’t have to take extra trips out to the garbage can. This is just one example of a product that was designed to make parenting easier the list of products like this is endless. When it comes to a child with a disability however, the market potential for useful products that would help make a mom or dad’s life a bit easier is just not that big, so we have to get a little creative.
You will see in the blog we outline some more ambitious projects that we have worked on to help Rebecca along the way such as:
And we have a couple of new ides that we are working on as well but this blog post is about a couple little things we learned along the way about adapting everyday things to help make Rebecca and our lives a bit easier.
The Laundry Basket Bath Aid
Because of Rebecca’s loss of vestibular function she has very poor balance, your vestibular system tells you where your body is in free space. Rebecca’s vestibular system does not exist so she has to rely on compensation. Her body is actively remapping this function to compensate for the lack of balance, so for instance she relies more on her core muscles and her vision to help her balance. Naturally this compensation will take time and Rebecca will be delayed when it comes to being able to walk. The balance issues first became a problem while giving her a bath. when she was a newborn she could easily be bathed in the sink in one of those infant bath chairs but she quickly grew out of the chair and it was time to put her directly in the bath tub. Rebecca’s lack of balance never stopped her desire to explore so of course this presented a problem in the tub as she wanted to move all around it, falling down and hurting herself in the process. We needed to keep her safe so Beth came up with the idea to place a laundry basket in the tub lined with a anti-slip bath mat which she cut to fit, this gave Rebecca some security while allowing the water from the tub to fill into the basket.
The cochlear implant clip
We found out soon after Rebecca received her CI’s that it was going to be a challenge to keep them on. We started with a headband but that was something she could and would easily pull off. We talked to other moms and dads of children with cochlear implants and one of the moms gave us a couple of shirts with a piece of fabric sewed to the back of it. It was a simple idea but it has been a huge help. All of Rebecca’s shirts now have a ribbon sewed to the back of them so that her CIs can be clipped on. Because the ribbon is located on her back it keeps her from pulling them off and playing with them. This little idea has been a major win for us.
Rebecca wants to walk, she is constantly in motion but her lack of balance limits her to movement around furniture or crawling on the floor. She still wants to be upright all the time though I think it is something instinctual that is telling her “hey its time to walk” but her body just is not ready for it yet. So she always wants us to hold her hands and walk around the house with her, of course we love this time together but it sure does a number on our backs as we are hunched over holding her little hands. We were looking for push toys that would allow her to move around the house without us needing to be there all the time. We stumbled upon a little shopping cart that was made more likely for a four or five year old but it is the perfect solution for Rebecca. It is just the right height and this toy now serves as a aid to help her learn how to balance.
Finding a stroller just right for Rebecca has been a huge challenge. Because of the way strollers are designed the first thing that happens when we put her in is, her implants fall off. We either have to take them off or constantly stop to adjust them. We want her to hear when we are out as a family especially when she is in the stroller as it is nearly impossible to sign to her while pushing her. We finally gave up on the stroller and went with a buggy. This simple adjustment allows us to take her for a walk and for her to hear during the walk. The buggy of course does not provide any protection from the sun which is needed especially for Rebecca’s eyes, but luckily Rebecca loves accessories. We put some sunscreen on her along with a hat and a pair of sunglasses and we are good to go.
More than likely we will be making little adaptations for Rebecca for most of her life. We are learning as we go, and we will do anything we can to make life even just a little bit easier for her.