I decided to start this blog series in hopes that sharing our experiences and resources would give hope to families that are affected by Apert Syndrome, or any other disabilities of a loved one and their struggles. Topics I will be sharing include a few recommendations from Occupational Therapy staff, but most were just from the glory of crafts stores, Google, and Amazon. Many of the ideas listed below may seem very obvious, or even outdated and irrelevant, being that our son is now almost fifteen years old. (Hard to believe!) However, being on the front line like you, I know how overwhelming things can seem, especially if you have just gotten a diagnosis, or when you are just trying to make it through to that next surgery, If you aren't able to take away anything new from this blog, as far as resources or ideas for your child, perhaps you will take away a sense of hope. Your child will amaze you and be able to do more than you imagine.
Logan had his fingers and toes released in two separate surgeries - the first at nine months old, and the second at twelve months old. The doctors informed us that he would never have the capability of bending his fingers in the middle of his bones as a result of him not having the "break" in the knuckles. However, we were also told that he should be able to learn to use his hands and function well with the help of Occupational Therapy and adaptations/modifications/accommodations. I don't know about you, but when I actually starting thinking about all the things we do with our hands: pick up small objects, open doors, dress and feed ourselves, write, etc., I felt overwhelmed (and realistically I questioned, "would he be able to do all of these things?"). But, even before his surgeries, we put anything and everything in front of him and let him begin to find his way and seeing what he could do.
To begin, I would like to address some of the exercises, modifications (which will be essential for other fine motor functions as well) and transitions of how Logan learned to dress himself. Here are some areas that were pertinent to how successful he is today:
1. Strength - It was very important for Logan to begin building strength in his hands. Regardless of the absence of his knuckles, we began having him practice with the fundamentals of building his strength. Your sweet son/daughter will instinctively try things even before any surgeries to release their little fingers, so here are some ways we helped him do that, beginning in his early childhood years: (I will address strength for the pincer grasp in the series for "writing")
- squeezing /pushing/pulling play dough. Sounds kind of simple, right? After five years of teaching preschool children with disabilities, I understood how imperative it is to build tone and strength in these little hands. As a matter of fact, it is recommended for all preschool aged children as a prerequisite for writing. If children who do not face the difficulties of fused fingers and corrective surgeries need this, then our precious ones with Apert certainly do too.
- pulling on a stretch tube - this was probably one of the most beneficial activities for our son. It was fun for him because these tubes make funny sounds when you pull on them, and he was certainly into the "tug-o-war" game. Ask your OT if they could provide one for your child to practice with at home. If not, they cost around $7.99 online. You can google "pop tubes."
- wheel barrels (Logan had a habit of curling his fists inward instead of putting pressure on the palms of his hands) so we would pick up his feet slightly off the ground and let him put pressure on the palms of his hands, and eventually he would walk on his hands while we made up our own song and sang "wheel barrel, wheel barrel."
- zipping, buttoning, and practicing with a piece of clothing that they are not wearing is helpful.
- Elastic waist pants/shorts - We kept our son in elastic waist pants/shorts for as long as we possibly could. After he had built his strength in his hands over the years he was able to pull up/down his pants or shorts with ease. Subsequently, the older he got, the harder it was to find these clothing items because it seemed everything came with buttons after about the size of 5T. He was gearing up for Kindergarten and we wanted him to be as independent as possible, especially when it came to restroom breaks. (During his early childhood classes, the Occupational Therapist did work on him using a tool to practice using that helped with buttoning, but it was quite cumbersome for Logan, so we discontinued it).
- Velcro - We transitioned from elastic and starting buying pants and shorts that had buttons, although he had not mastered this skill and just wasn't ready for buttons yet. This also meant that he would need assistance with the zippers for awhile, in which we did have to assist him at times, by pulling the pant leg down just a bit so he could get his fingers to the zipper. Sometimes I would just get the zipper started and allow him to finish. We decided to buy heavy duty Velcro and had sewn in place of the buttons so he would be able to fasten them. There were some issues with the Velcro coming undone when he sat down, so we really didn't use the Velcro for a long period of time.
- Hooks - Now it was time for the hook and eye closer for pants. I specifically looked for pants and some jeans that actually had the hooks to fasten and often had to order some online from Old Navy, but at times was able to find them at Target. After a little practice, he was able to pull both sides of the waist of his pants together in order to fasten them.
- Snaps - Finally at about fourth and fifth grade, we bought a "rivet" tool for fabric from a craft store so we could attach snap buttons to his jeans since he had enough fine motor strength to pull the waist together, and it was difficult to sew hook and eye closures onto thick denim material. We removed the buttons from the jeans and used a rivet tool to attach snaps for him to push together, which he learned very quickly. He was able to manipulate these snaps quite well. We bought this rivet tool at a craft store (Jo Anne's) and it cost $27.99. I am pretty certain you could find these at Hobby Lobby, Michael's, Walmart or even order one online.
|Hook closer for pants|
|Rivet Tool with Snaps|
- Buttons - At about sixth grade, I bought him jeans with buttons, and did not modify them to see what would happen. It took some practice, but he had built up enough strength and confidence that he began to button jeans on his own. This was also the age where he began improving on fastening buttons on a shirt, which is a little easier than pants because the shirt material is lighter weight. From about sixth grade on, I have not had to worry about buying special pants or trying to figure out how we could modify them!
- Draw Strings - As he has gotten older and likes to wear sweat pants or sporty shorts that have draw strings, we needed to come up with a solution for him, since he was not able to tie strings into a bow very well. (We worked on tying shoes and laces for awhile while he was younger, but it became too frustrating for him. Accordingly, we decided that for all practical purposes, tying shoes was not the most important skill for him to master, but it is certainly a parental preference of what is best for your child. He is able to tie strings into knots, but then there's just that....they're knots!) So, I discovered a trick that we also use for his shoes (I'll discuss shoes in series 2) which makes it fast and easy for him to tighten any shorts/pants with draw strings. I found some shoe clips at the sports store Academy, (you could probably find these at any sports store) that come with specific types of shoe laces called "performance stretch laces." These laces come with clips that help you to draw the string tighter, and depending on the brand, they ranged from about $2.99 - $7.99 per pair of laces. I bought the cheaper ones because truthfully they are all the same, and I was buying them specifically for the clips. If you go to a sports store, they will be in the small section with different types of shoe laces. You can also order them online! Below is a quick video as an example along with a picture of the performance laces with the clip. (Bare with the video, it took a little coercing to get the fourteen-year-old to allow mom to video....he seems to have better things to do, like play video games)
|Performance laces with clip|
Have hope. Be encouraged. Your child is a true gift from God. Expect nothing less, than for your son or daughter to reach their full potential. They will persevere and impress you with true GRIT!
On the days when it seems that there are just too many things you have to worry about, and the overwhelming reality starts to seep in.....try to take one skill, one day, one surgery at a time.
I always remember my grandmother singing the song, "One Day at a Time, Sweet Jesus." This chorus still rings in my head to this day.
Faith in the size of a mustard seed is all you need.
In the next blog series, I will be sharing our experiences with Apert feet and struggles with shoes!
Until next time,