My name is Danielle and my husband is Bobby. We have 2 children together, Oliver age 5 and Charlotte age 3. After our Oliver was born with a rare genetic ‘order’ we were tested and told the odds of it happening again were nearly zero and were given the OK to try for more babies. Charlotte was born April 16, 2020. Smack in the middle of the pandemic. We had a planned c section because I had gestational diabetes. The surgery went well, no complications. Then when we got to be with her, hold her, feed her…things seemed “off”.

Charlotte was very rigid and her body just seemed to be totally opposite of our last baby’s hypotonia. Charlotte seemed almost hyPERtonic. She had trouble feeding too but nurses assured me (from a safe distance) that I’d get the hang of it. It would be ok. We went home and didn’t sleep again for nearly 3 years. Charlie, as we call her, would cry and cry unless we held her tight and kept moving. We reached out to lactation consultants, therapists, Dr’s , only to be told that this is MY ptsd from Oliver’s traumatic birth.

We were brushed aside even when I clearly saw issues. Covering her ears with certain sounds, sensory seeking, sleep issues, tremor like movements, and no words until after she turned 2. Finally one day after receiving Oliver’s dx of autism on top of the PWS, I decided to demand further Genetic testing for the link to autism. Charlotte would be my 3rd child on the spectrum if it were true. We did the swab test and Charlotte’s is the only one who’s came back with a genetic change. It was GRIK2. I found nothing about it online. But after being in contact with Dr Geoffrey Swanson then this whole gri community, we finally feel seen, understood and NOT CRAZY.