Until now I’ve never met or known a fully blind person. I’m sure that is the same for many of us. It’s not something you come across in life often. I spend so much time thinking about Will’s future and what he will be when he grows up, will he be fully independent? These are the questions that plague my mind, the long term. While late nights my thoughts drift to the long term complications of his disability, I’ve come to realize that the day to day has many challenges that are now plaguing me as well.
As a mom it is instilled in you to take care of you child and keep them safe. This is your core source of being as a mom and when you mess with that the hurt is deep. Any time you are not able to fulfill this purpose as a mom you find yourself hurt on such a deep level and blame yourself. Seeing your child get hurt and watching them fall or run into something without attempting to prevent it goes against everything you are. Unfortunately, this is much of your day as a mom to a blind child.
I am so blessed that despite Will’s disability he is quite the adventurer! He is everywhere and into everything. I love watching him explore new areas of our home and familiarize himself with getting around. He is so brave and independent which is not the typical for blind children. The downside of this is that with more exploration comes more falls! And with more falls more injuries!
We have had a lot of falls recently that had resulted in injury. All are fairly minor injuries but the damage it does to my heart I can’t explain. Dad and I early on in Will’s diagnosis agreed that we couldn’t be helicopter parents.
We feel it is important that he learn to be as independent as possible. We wont always be there to take care of him so it’s very important to us that he be as capable as possible. Now that he’s walking around without holding on to anything it’s really put our independent philosophy to the test.
He has started to understand the words “careful” and “wall”. I try to tell him when things are approaching so he can reach out and feel it before running into it. This is not always the case but often it does prompt him to slow down and reach in front of himself. As a toddler falls and bumps are to be expected. It’s very much a part of the process of learning how to walk and get around. The problem we have is that while he has learned to instinctually put his hands out in front of his body to catch himself on the ground. Sometimes there are objects that our hands don’t find but our head or face does! Chairs, tables, furniture, steps, toys you name it all are hazards in a toddler’s world but especially a blind toddler. Just this past week Will has had 2 bloody noses, a black eye, bruise on his cheek and a knot on the back of his head. One of the scariest of these recent accidents was his 2nd bloody nose. He was walking around the family room and from the other room I just hear Will start to cry and dad yelling for Help. By the time I get into the room Will is screaming with tears streaming down his face and blood dripping out his nose. Those cries for Mama through the tears always stay with you as a mom and are just soul crushing. He was apparently walking along and fell with his face crashing down on his little upright piano. I could see right away his nose was swelling so I made dad call the pediatrician. Luckily no broken nose but I couldn’t help but think this is the first of many and is it just a matter of time before he does break his nose!?
Will has done an amazing job of mapping out our house. He knows were the couch, stairs and piano are located and expends minimal efforts getting to them. He loves walking over to the large glass slider in the family room and banging on it, I also find him half way up the
few basement steps we have within a matter of seconds. By far my favorite is when I put him on the opposite side of the room as the piano and within a matter of minutes I hear him banging away on the keys. It is the mobile objects I am having a hard time with. That piano he busted his nose on is small and often gets repositioned around the room so he had no idea it was there. The same goes for his other nose bleed. He was walking full force with his walker and ran into a kitchen stool I had left pulled away out from our counter. How do I help him with this?? I can’t remember to keep all the things in their exact place all the time that sounds maddening. When I try to hand him his cane to use he ends up putting the tip in his mouth and walking around like that which definitely is not safe. If anyone has any advice I’m all ears.
He has started to be able to find an object or person in a room based off of sounds. If he hears his little piano he can find it! I've been trying to work with him to find me based off of my voice. If I repeatedly say "come find mama, I'm over here" eventually he will find me. It's been a process but he has learned through that how to locate people and toys based off of sound. Again though not everything makes sound as you approach so you don't always know something is there.
I've been trying to read and research how to best help him with the falling and injuries. The common theme is keep the floor picked up and keep things are in their same places. harder than it sounds! Between a toddler, 2 dogs and a husband things never stay put away. I know though looking overall at the things he gets hurt on vs the things he doesn't this is the key. We have a large cat tree in the family room that has multiple tiers and sharp corners. I have not been good about baby proofing the corners like I should but Will has yet to get hurt on it. The only thing I can think is that it never moves. Clearly it's time for Jon and I to put our philosophy to practice. If we want him to be independent and comfortable moving around we need to encourage positive mobility experiences. that means picking up the floor and leaving larger objects in their designated spaces. We want to encourage Will to explore and feel comfortable moving around and if cleaning is how we can help it's time to roll up our sleeves!