Children - Special Needs Community
Anyone with experience on RSS?
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Anyone with experience on RSS?

My hubby and I adopted 2 grandsons. One was an infant, the other was a toddler. Bio parents were on drugs, and the children were neglected and prenatally exposed to drugs and alcohol. They are now 8 and 10 years old.
The youngest was perfectly normal until age 6, when he developed a horrible, violent temper. After a 3-week stay in a children's psychiatric hospital, he was diagnosed with Bipolar Disorder. He is now on medication and doing much better.
Our oldest has always been our mystery child. He was severely developmentally delayed as a toddler. We chalked it up to neglect and worked hard to get him caught up, but he fell further behind. He was diagnosed with ADHD at 6 yrs old and put on medication. It helped keep him in his seat, but he struggled in school. He is a very slow learner, and tends to get frustrated when he doesn't understand. Frustration leads to meltdowns. He would draw pictures instead of doing schoolwork, and when pushed to learn, he would crawl under his desk or bolt from the classroom. He has never acted like other kids his age. He daydreams and talks to himself a lot. He has OCD tendencies, like snapping his fingers constantly and picking his lips until they bleed. His mind wanders and he doesn't always make sense when he talks. He spends every free minute building elaborate creations with his beloved Legos. Teachers and doctors blamed all the "quirks" on the ADHD, but I knew something else was going on. He is also VERY small (10 years old now, 48 inches and 48 pounds).
He had seizures at school earlier this year, and the EEG showed an absence seizure disorder. His neurologist referred him to a pediatric geneticist. Our appointment was Wednesday, and we finally got some straight answers. Primary diagnosis is Russell-Silver Syndrome. I'd never heard of it before. Apparently our son is a dwarf!  
Secondary diagnosis is Asberger's Syndrome complicated by Fetal Alcohol Effects, So we have an autistic dwarf. The next referral is to a neuropsychiatric evaluation to determine where exactly he is at on the autism scale.
I would LOVE to find someone who has experience with RSS. All my information has come from google research. I called our regular pediatrician after we left the genetics appointment, and told him what we learned. He had never heard of it either! He promised to research it and get back to me. So I'm feeling a bit overwhelmed and alone now.
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