Before I found the SATB2 Associated Syndrome support group on facebook, I felt very alone. I didn't belong with the "normal" moms- it made them uncomfortable when I discussed the disability. Nor did I belong in the medically fragile kids group- they rolled their eyes when I would mention that no, Chelsea has never been hospitalized for a cold. Same with Autism, Down Syndrome, and other "more common" disorders- I never fit in.
For the longest time, I just thought I must be a horrible mom, since everyone else's kids were doing so much better than Chelsea; she was my first and I had no nieces or nephews to compare against. I was completely convinced that everyone else knew a secret about parenting that I was totally ignorant of- why else would my perfect baby need 4 hours of physical therapy practice each day to learn how to crawl?
I first found some support from my aunt, who has 2 autistic kids of her own, and knew the feelings I was going through, even if I was still in denial about it myself. I also had my older sister, who is an ABA therapist, who was able to give some great ideas on how to work with Chelsea.
It wasn't until Chelsea was nearly 5 years old that we got her genetic diagnosis- SATB2 Associated Syndrome/ Glass Syndrome (Same thing, different names) and looked for an online support group. With only 50ish kids worldwide diagnosed, the support group has to be online (and thank you to google translate!!!!) because none of us live very close to each other.
That facebook support group has been a lifeline for me! I talk to other SATB2 parents about the daily struggles, as well as successes, and they are there for me- to offer advice, console me on hard days, and celebrate for Chelsea when she has good days.
The support group is private and only for parents of SATB2 kids, so that we can openly discuss issues that we don't feel comfortable sharing publicly. Even with my over-talkative nature, I still have issues I don't want to discuss with anyone else. I will be eternally grateful for all of the support they give me!
It wasn't until Chelsea was nearly 5 years old that we got her genetic diagnosis- SATB2 Associated Syndrome/ Glass Syndrome (Same thing, different names) and looked for an online support group. With only 50ish kids worldwide diagnosed, the support group has to be online (and thank you to google translate!!!!) because none of us live very close to each other.
That facebook support group has been a lifeline for me! I talk to other SATB2 parents about the daily struggles, as well as successes, and they are there for me- to offer advice, console me on hard days, and celebrate for Chelsea when she has good days.
The support group is private and only for parents of SATB2 kids, so that we can openly discuss issues that we don't feel comfortable sharing publicly. Even with my over-talkative nature, I still have issues I don't want to discuss with anyone else. I will be eternally grateful for all of the support they give me!
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