To start I’ve found out the local children’s hospital is a research hospital and is notorious for medical kidnap. Many parents have kids with special needs, I fortunately have an otherwise extremely healthy child but developmentally delayed with an unknown genetic disorder. For the first 5 years of his life we searched for answers. Over covid his pediatrician gave me concern so I moved him, this new doctor we saw once before I was concerned about how her practice bullied her into supporting things she didn’t believe. She then came out in support of the covid shots, which she was against before the bullying. I haven’t been back to her. My son was cleared from the neurologist, cardiologist, orthopedic, genetics clinics in our previous state. They had no answers so we do therapies and help him the best we can but haven’t reached out to any specialists in our new state. He is in a great school and is doing well but again we don’t know what’s causes his delays. I met someone today who told me about a program we could participate in that would draw his blood and enter him in a database to find “genomic” answers. He is healthy, he is happy, I have accepted he may never speak, I have accepted he will never live on his own. The last three years I’ve come to distrust most in the medical field, my son is amazing just the way he is. I know there is no fixing his issues but would you still look for answers? I’m torn between protecting him and helping him. I don’t know any doctors here to ask advice, any doctors I knew are from my previous state.
You're viewing a single comment thread. View all comments, or full comment thread.
Comments (23)
sorted by:
Sorry to hear about your challenges and I applaud your tenacity.
Two sources I would recommend to look for in your new community: Home school families (quite often, a primary reason for home schooling is that the child has a disability, so you're among friends who "get it" and who might be able to refer you to medical experts who also "get it"); the second would be the special education teachers in the schools--the "good" ones are very passionate about helping you find the resources you need, and they're passionate typically because they grew up with a sibling with a disability and that is how they got into the field.
Just my two cents/sources : )
Thank you! We are connected with other families and definitely have sought out homeschool families too- this was something new that I’m unsure of just didn’t know if I was right or wrong…still not sure. My oldest son says stay far far away from that hospital. I haven’t dealt with their genetic clinic so I don’t know anything about them. It’s just that I have no idea where his info would wind up at in the end.