Lauren Perry is the Operations Manager at SRF and mom to two boys, including 11-year old Syngapian Will. Here, she shares valuable experience on a topic no one talks too much about, but one that many parents deal with on a daily basis.
Parents look forward to their young children reaching milestones, including first words, first steps, first solid foods. During toddlerhood self-care tasks take the stage, like self-feeding, self-dressing, and of course the big one: potty training. If your child has SYNGAP1, you may find that your child is delayed in this area or that it never happens. While this in itself can be highly discouraging–the thought of changing this person’s diapers forever is daunting–we learn to accept it and hope that one day things may change and our child can have that level of independence. In the meantime, your child grows and grows and the diapers or pull ups need to grow with their changing body shapes and sizes.
A related aside: SRF has a nice blog about potty training a Syngapian that I encourage you to read.
My son is 11 now and is still in pull ups. We have gone through so many trials of different sizes and brands of diapers and pull ups over the years, and I’m guessing there are many more to come until he settles into his adult size. A lot of medical suppliers will send you free samples of the different products they carry. This can be a very helpful service. Otherwise, you end up with boxes and boxes of unusable supplies that take up a lot of space. I have donated many boxes of pull ups over the years. Luckily there are organizations that take them willingly.
Finding resources to help pay for supplies
We live in the US. It’s a big country with 50 states, and each state has different waivers and Medicaid coverage for your special needs child. Many US states have a state waiver that first gets the child on Medicaid and gets them other waiver services. Some states have Medicaid buy-ins for the disabled, which will get them Medicaid for a monthly fee based on income once they have been determined disabled.
When you are determined eligible for Medicaid in your state, your incontinence supplies may be covered to some extent. Each state has the option to cover incontinence care supplies and related equipment and accessories. Most, but not all, states offer some coverage, and that coverage varies widely from one state to another. I encourage you to check out the following websites to find out more about what services you can get through your state:
- Parent2Parent USA is great, but unfortunately doesn’t cover every state.
- Family Voices has links to each state which will connect you to some helpful information.
Our experience through the years
I will tell you my experience through the years with my son and his incontinence supplies. We live in Colorado. When my son was 4 he was put on a state disability waiver called CES (Children’s Extensive Support). Getting this made him eligible for Medicaid. Because he was 4 and it is known that most 4 year olds would be potty trained, incontinence supplies are covered as a medical need. We had an appointment with my son’s doctor to talk about it during a visit and then he wrote a note in his chart that he needs incontinence supplies.
I then found several medical supply companies in my area and asked them for samples of the different styles of diapers and pull ups they had that are covered by Medicaid. This took a bit of time to find the right fit. We also talked about other incontinence supplies we could get. For my son we can also get changing pads (chux), wipes, barrier creams, and disposable gloves. Once we had our order ready, the medical supplier called the doctor for a prescription and took care of the rest. Once a month we receive a big shipment of all these supplies. The medical supplier will call us at the end of the month and ask us what we need. It’s fantastic and is one thing that has been made easy for us. It’s also been such a blessing and taken a large financial burden off the family.
Diapers or pull ups?
One thing to think about is: Do you use diapers or pull ups? Diapers are nice because not all the bottom half of clothes and shoes have to come off to get the diaper on like they do with pull ups. Unfortunately, I’ve found they don’t fit my son right and tend to bunch up too much around his groin area; then they end up sagging or slipping off and it’s just a mess. We like pull ups because of the elastic waistband that keeps the pull up snug while also being absorbent.
As my son has grown and is now entering puberty, his body is morphing. Where he once was a skinny little guy, he has now grown more robust. It’s been really challenging finding the right fit. Sometimes the pull ups are too tight around his thighs, sometimes they don’t go high enough to cover his whole bottom, and sometimes they are too loose and leak. I actually had to switch medical suppliers recently to get him the pull ups that fit him best. I liked our old supplier, but they didn’t carry the right brand for now.
I don’t doubt that in a few months we will be changing sizes or brands again! It’s frustrating but necessary. And while I will never give up hope that my son can someday use the restroom on his own (or with at least minimal assistance), I remain realistic that this could be our future for a long time.
Here is a screenshot of the poll results: