Tell us your child’s story.
Charlie is 7 years old and will be 8 in August. He has been diagnosed as having Type 1 (Hypermobility Type) Ehlers Danlos (ED) since before his second birthday. Ehlers-Danlos syndrome is a group of inherited disorders that affect your connective tissues — primarily your skin, joints and blood vessel walls. Connective tissue is a complex mixture of proteins and other substances that provide strength and elasticity to the underlying structures in your body. People who have Ehlers-Danlos syndrome usually have overly flexible joints and stretchy, fragile skin. This makes small motor and large motor skills difficult for him to develop and makes a lot of things that are simple for us a challenge for him. Additionally, Charlie was diagnosed as having some scar tissue in his brain that likely formed during an illness during my pregnancy which combines with the ED for him to have speech delays. He is presently being seen by Norton Children’s primary care in Clarksville, Indiana, and is seen at the rheumatology/Ehlers Danlos Clinic in Cincinnati for specialist care.
Charlie is a hilarious and positive kid who doesn’t seem to notice his own discomfort or difficulties for the most part. We have seen dozens of doctors and dragged him to a ton of service providers and through it all he has been open to the adventure and always tries so hard to please his supporters and make progress.
Charlie is in Kindergarten at Grant Line Elementary. Our current school/therapy combo really seems to be working. He is making a ton of progress this year in his speech and his handwriting.
Why did you choose APT for therapy services?
APT was recommended by our Pediatrician’s office. It was amazing for us to find a therapeutic environment that would be able to meet all his unique sets of challenges and fit his therapies into one block.
What improvements have you seen in your child since they started therapy at APT?
When Charlie started at APT it took a poster board for him to be able to fit his name when he wrote it. Small motor was just such a challenge. His hyper mobility makes it seem like he is double jointed in all his joints. Holding a pencil and guiding it is extremely difficult. In just over a year and a half at APT, Charlie is writing at an appropriate size for his peers. His handwriting is shaky, but legible. I honestly didn’t think this was possible. I thought he would have to be able to type to communicate so giving him the gift of writing is huge to us.
Charlie has also seen less days of discomfort. The ED causes some inflammation and swelling in his joints. We had a period of time when this led to quite a few Emergency Room visits worrying over a possible dislocation etc. Since he has been receiving his therapies at APT, we have seen less and less complaints of significant pain in his joints.
What has been your brightest moment along the journey?
Watching Charlie be proud of the things he draws and writes in kindergarten. I know that without his therapies he wouldn’t be able to meet those goals and he would just be so frustrated.
Also, he really is, probably for the first time, understanding the difference between what he hears and what he says, and this makes him try so much harder to obtain the sounds that are hard for him. I have seen a significant progress in his speech in the past 4 months.
What advice would you give other parents who face similar situations?
The key to success for your child is to find a team that backs you up and works hard for your child to progress. We had therapy at 2 or 3 other locations before we found APT, and they all tried but APT had that pediatric specialty, could do all of his services in a focused way, and were adamant in joining our goal for Charlie to have as “normal” of a life as possible. The mutual desire we all have for him to be happy and making progress has been a game changer. Find people who support you on your child’s journey and make the most of the opportunities.
Charlie has had a team of therapist who have joined alongside him in advancing him to his next therapeutic level. At the end of 2018 Associates in Pediatric Therapy purchased Southern Indiana Rehab Hospital’s Pediatric Therapy division. As part of this acquisition APT gained incredible therapist who transitioned into their roles from SIRH to APT. Read below as these therapist share about their relationship with Charlie and the improvements they have seen during their time together.
How long have you been working with Charlie and what improvements have you seen?
Amber Applegate, OT: I have been working with CB off and on since 2017. CB continues to make great improvements during his OT sessions. We work on everything from handwriting, to fine motor skills, to self-care skills, to postural control needed for stability to sit in his chair during desk work. CB has made great improvements in all of these areas and continues to make improvements every time we meet!
Anne Bielefeld-Schroeder, SLP: I have been seeing Charlie since January 2019. Since our sessions began, I have seen great improvements with his awareness of deficits and ability to self-correct errors. For instance, Charlie tends to leave off the ending sounds in words like final /s/, but, with some reminding, he does not need models to accurately produce them (ex. this and books) at the words and phrases levels. He has also improved to /s/ blends at the beginning of words (ex. slide, step, and spoon) and this has been carrying over into conversation at times!
Cathy Stewart, PT: I have been working with C on and off for about a year and a half, first at SIRH then with APT. He has made great improvements in his overall strength as well as flexibility in his legs. This has really set him up to make really good progress toward more age appropriate gross motor skills. But I would say the most dramatic change has been in his self-confidence. I feel like he is so much stronger and capable and now he knows that himself and can really feel the difference.
Describe a little about your and Charlie’s relationship.
Amber, OT: CB has been coming to therapy off and on for about 2 years and I have been his primary therapist for Occupational Therapy, so we have gotten to know each other very well in that time! CB is a very fun kid to work with. He is social, funny, and thoughtful. He brought us all a treat at Easter and was so excited to share it with us. During our sessions we are able to incorporate work skills with fun play activities, which is what makes therapy fun. I enjoy my time with CB every week!
Anne, SLP: Charlie is a joyful, social, and loving human being, which causes him to get distracted during sessions at times. I have learned to provide him with social and play time so he can use those strengths. In relation to this, Charlie has learned that with hard work on the tasks presented, he gets rewards such as gym time/play time in the therapy room.
Cathy, PT: Because I get to work on C’s physical skills, we can incorporate a lot of fun into our treatment sessions. Over the time we’ve worked together, we’ve come to an agreement. As long as he is trying his hardest, regardless of the outcome, he’s doing a great job. Every now and then he tries to slide back into a slightly more dependent or helpless mode, but with just a little encouragement, he will always get back and track and try as hard as he can. The fun thing now is he can see the improvements.
What is one of your favorite moments you have shared with Charlie?
Amber, OT: CB loves to play games, and that is typically what he choices as his reward at the end of our sessions. He always looks forward to this time, and honestly so do I. Although I try and make OT fun, I know a lot of the things we work on are more challenging for him. So, the end of the session is always a fun time that we are able to share together where he doesn’t have to concentrate so much on his work. He gets to just enjoy being a kid ?
Anne, SLP: There has not been one specific moment, but every time that I see his “wheels” turning when he is trying to understand something, or when he is trying his best to figure out a concept, makes me smile. It shows me he wants to be his best and that is what I want for him.
Cathy, PT: Any time we can play a game together is always as entertaining for me as it is for him! C has the most amazing imagination which he loves to share with anyone! And now that his articulation is improving so much, he is much more willing to share even more complex stories with me, knowing that I will now be able to understand him. One of the most satisfying aspects of my job as a PT is the opportunity to help patients and their families attain any necessary adaptive equipment. I have been working with C and his family for several months to help them get an adapted stroller for him to use on longer community and family outings. It has been a complicated procedure, but we’ll hang in there with it and get it eventually! Sometimes it’s hard for the general public to understand the spectrum of disabilities. At first glance, C might not look like he wouldn’t need any type of adaptive equipment. But due to issues with decreased joint stability and decreased endurance compared to the average child his age, he would be really limited in what he could do out in public if he didn’t have access to some type of adapted mobility such as a stroller. It’s a good lesson for everyone on tolerance, acceptance and understanding – just because someone doesn’t LOOK disabled, doesn’t mean you know everything about them.