So Usher syndrome effects three senses in the body: hearing, seeing and balance. Since Jackson has Usher type 1B his vestibular organs do not work at all. I can read a lot about deaf-blindness, but not so much on the balance issue so that leaves me restless, what can I do to help my son?
We consulted Usher specialist Dr. Pennings at Radboud UMC Hospital in Nijmegen (Netherlands). He explained to us that children with Usher 1B will sit and walk later than normal kids, we should expect Jackson to walk around 16 to 18 months. Kids with Usher 1B will find their way and will learn how to sit and walk, compensating the loss of balance with other parts of their body. The doctor told us about an 8 year old skater boy with Usher syndrome, that is amazing right? That your body can adjust like that? Dr. Pennings stressed that since Jackson is born with non-functioning vestibular organs, his body and mind will deal with it, he does not know any better. Adults who are suddenly faced with non-functioning vestibular organs experience huge problems and have great problems adjusting.
We also visited a psysiotherapist, and besides the fact that Jackson cannot sit on his own, all of his motor skills are perfectly fine and in line with his peers. He is strong, that is at least what every nurse and doctor tells us. Right now, there is not much we as parents can do to help Jackson with his balance issue but let him discover this at his own pace and let him exercise and practice much as possible.
We try to help him sit and encourage him to do so, but it’s difficult. He does not like it at all, he will arch his back and stand on his feet. If you sit him down on the couch, he will simply fall to one side. If you sit him down on the floor, he will lean over on his two hands or to one side, he rolls onto his belly and takes off in a crawl. When he is safely secured in his high chair or bicycle seat, he is comfortable sitting. Especially when there is food involved…
Sometimes I think Jackson might be a bit frustrated, if you can sit, that adds a whole other dimension to playing and experiencing the world around you. It’s confronting for me to see other babies of Jacksons’ age sitting, would he feel the same? I cannot tell.
I guess all Jackson needs is time. It would be reassuring though, to hear from other parents who have experienced the same thing. I would love to hear your stories.
Respect for the way you handle your challenge with a child who is born with Usher syndrome 1b.
If you would like to have contact with other parents of children with Usher 1b in the Netherlands please contact me. I would love to help you.
I have Usher 2a, love to run and have 3 children (3, 8 and 12 years)
Nicole Lo-A-Njoe – Kort
Hi Nicole, thanks for your comment. I am in touch with Stichting Ushersyndroom and parents who also have kids with Usher 1B. Don’t hesitate to send over more information if you have so, please contact me via firstname.lastname@example.org. Thanks.