Updated: Aug 30
By: Ivette Sepersaude
As a parent to an older child with a rare and newly discovered diagnosis, we are often sought after by younger and newly diagnosed families. Being that HADDS is still in the beginning stages of research and only a small population is over 13y/o, this leaves families with a lot of unanswered questions. They aren’t able to do a typical “Google” search and find hundreds of posts and articles relating to HADDS like you're able to do with long-standing genetic disorders.
There is a sense of responsibility that comes with parenting an older child with HADDS, a responsibility we welcome with open arms. We share our personal experiences, make connections, and provide the comradery we longed for during our undiagnosed and lonely years.
During our initial appointment with Dr. Chao, Kai asked her how he can have the same syndrome as the other children, yet he looks different from some. She reminded Kai that
“HADDS is only a part of who you are.”
He is more mommy and daddy than he is HADDS. As a mom I needed to hear those words as well, my son has HADDS, but he isn't just “HADDS”. With that said, our special needs journeys may differ but there are common traits, milestones, and techniques that are surely worth sharing.
In this blog, I’ll share a few frequently asked questions we receive more regularly and provide answers based on our personal experience.
Q: When did your child walk and what did you do to help him?
A: He started ambulating while using a walker at 3y/o, He was walking independently without assistance at 4 ½. Kai received PT three times per week starting at 9 months. We knew it was important to follow through at home and work with him often. It was not realistic for us to think three hours of PT a week would be a cure-all. We always sat in on Kai’s sessions and practiced hands-on with his therapists. I believe this made the biggest difference in his gross motor development. As Kai has gotten older, walking has become more difficult due to contractures in his legs. Currently, he uses a wheelchair for longer distances, and we encourage him to walk as often as possible. Kai's balance continues to be a challenge for Kai due to his diagnosis of Cerebellar hypoplasia.
Q: When did your child talk?
A: Kai started speech therapy at 1y/o and to date still receives it at a lesser frequency. He originally conveyed his needs using various forms of communication before he said his first words. I remember I could feel him staring at me when he needed something. At that point, he wasn’t even able to sit yet but I could feel his eyes piercing through me. With no verbal communication, I used the process of elimination to determine what he needed. When he was nearing 3y/o he began to use PECS (picture exchange communication system). We kept his picture options limited to his most common needs. Sign language came just a few months after PECS. It was clear he was a great listener and understood almost everything but he had difficulty with his expressive language (still does). When Kai started walking with his walker the language started to flow. It was like a flower that started to bloom all at once.
Q: Which specialists does he see?
A: He is currently followed by Neurologist (neurological disorder) geneticist (syndrome), ophthalmologist (strabismus), cardiologist (echogenic foci & lower extremity circulation), nephrologist (intermittent stream), orthopedic surgeon (contractures & pes planus), gastroenterologist (slow-moving bowels/reflux). Therapies; Physical therapy, Speech therapy, Occupational therapy & ABA therapy.
Q: Does he take medication?
A: Currently on a vitamin D supplement due to a deficiency, melatonin to help him fall asleep, and Miralax for constipation. I have heard other children/adults with HADDS take medication for seizures as well as urinary incontinence.
Q: How did you explain HADDS and disability to Kai?
A: When Kai was approaching 9 years old he began to notice a difference between himself and his peers. He started to ask why they could jump, and he couldn't, why they made friends easily but it was hard for him. Shane and I never pinpointed a time when we would talk to him about his differences, we knew the appropriate time would present itself. The day we first talked about it, we spoke in positive tones and focused on his strengths. We explained that although he might have difficulty doing certain things, he was also given extra ability in other areas. For example, his hearing, memory, and knowledge of science are above average. We all have strengths and weaknesses, some are just more visible than others. Most of the time Kai is quite ok with not being able to physically accomplish what other children his age can do, but there are rare moments where he expresses his disappointment. We let him know it's ok to have moments of disappointment and sadness, we all have personal challenges, as long as positive moments far outnumber the sad ones. The same way I mourned his diagnosis, I need to allow him to do the same.
Q: What do you do to encourage socialization?
A: Kai participates in several adapted sports. He rides horses, is on the bowling team, handcycles, and played sled hockey. Adapted sports are not only great for strengthening, but it also creates a great space for socializing. Kai is also part of a social club at school where they practice conversations with each other, among other helpful skills. I suggest looking into special needs programs in your local community. If they don't have programs, they may be willing to adapt their current programs to accommodate your child's needs.
Q: Is there anything special or helpful you have learned to help him learn in school?
A: When it comes to every new school year. One thing I put a strong focus on is my relationship with his teachers and aides. I have found that rather than Kai being 1 of 17 students, he is then seen as Ivette and Shane’s son. Building that personal relationship creates a warm space for Kai to grow and learn. Another helpful tip is sending a journal back and forth every day. This promotes great communication between teachers, school therapists, and myself. The journal is also a great way to see his progress during the year. Comment down below and share some of your tips!
Q: Any advice for younger families?
A: My best advice is to trust your gut, follow through at home with therapeutic activities, and believe in their ability to achieve the “unattainable”. Your child’s ability to overcome and grow is never-ending. Give them extra time, it is a common HADDS trait to have delayed processing. Most importantly remember that your child is an individual. Just like folks without a genetic mutation, they have personal characteristics that set them apart. HADDS is just a part of who they are, the rest of their being is unique and separate from their diagnosis.