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As much as I know about 49,XXXXY Syndrome as a parent, I find I’m learning new things all the time. Baby G’s chromosomal abnormality and the struggles that come with it have melded completely into our little family, making us more prepared for anything unexpected that comes our way.
His Progress with 49, XXXXY Syndrome
Physiotherapy: Our therapist recommended we find Baby G a small chair to promote the sitting position and to practice standing up. She also said if we put toys in front of him while he’s seated, it will force him to use his abdominal muscles to reach down to pick them up. We chose the Fisher-Price Laugh and Learn Smart Stages Chair. We found that putting a big bucket of blocks in front of him works very well for these exercises. He’ll reach into the bucket to pull out some blocks, and the more he does it, the further down he needs to reach. He loves the sound the blocks make so much, he does it over and over. It’s coming quite naturally to him now. The remote control and book on the arms of the chair encourage Baby G to twist as he’s reaching, another great movement to encourage stability in his core.
We’ve begun to help him start to walk around the house, following our therapist’s rule of “nose over toes”, meaning we want him to do the work to keep himself upright. We’re also holding Baby G’s arms below his shoulders as we walk him, as if he were holding a tray, rather than above his head. Again, this forces the core muscles to engage. He’s getting the hang of cruising around the furniture on his own, but we’re having to make sure he’s not resting his torso as he walks, that he’s keeping space between himself and the couch.
Speech: I’m hearing much more conversational babble from Baby G lately, which makes me so happy. When I pick him up from daycare, I swear he’s saying, “Goodbye, see you tomorrow” to my care provider. It’s wonderful to hear. He’s pointing, laughing, whining for what he wants, using occasional sign language; it’s great to see him progressing into normal communications.
Our Progress with 49, XXXXY Syndrome
I’m so excited to share that one of my readers tuned me into a Facebook group just for parents of boys with 49,XXXXY Syndrome. Parents share their struggles and victories, post pictures and videos. Through this group, I’ve learned what other experts are sharing with parents, as well that there is an annual conference that is held specifically for 49,XXXXY Syndrome. How amazing is that? The conference features interview rotations with specialists and conference presentations. This year, it’s being held December 2nd, 2016 at Thornton Manor, Wirral, Cheshire, UK. Unfortunately, we won’t be attending this year, but just to know that these gatherings are being put together by experts is so encouraging. If you’re a parent of an XXXXY boy, be sure to connect with the 4-XY 49 Syndrome Facebook Group.
Baby G has also been approved for a government disability tax credit because of his chromosomal condition, which we’ve received and invested on his behalf. We’re hoping to see that grow, but are still keeping it accessible for any equipment, tutors, or other supports he might need in the future. Eventually, we’re planning to move it into a Disability Retirement Savings Plan, if it turns out he’ll need it later in his life. We’ve also been approved for a small sum for special services that we can use to pay for things like swimming lessons for him, a baby gym class, anything that we feel he might benefit from.
I always enjoy writing about Baby G’s newest accomplishments on Niagara Mommy. It’s encouraging to me that parents of XXXXY boys, or of special needs kids in general, are out there and creating communities together. Even more so, I take comfort when the low times set in, when my mind fills up with the “Why”‘s and the “How”‘s and the “What’s going to happen next”‘s, that we’re all in this together and there are some great things happening with our kids.