With my mother being a Special Education teacher, I grew up hearing about children with special needs. I had some understanding of the problems they faced, but I never realized how much a parent is affected by having a special needs child, too. When I was younger, I assumed it was like having a typical kid who just needed a little extra attention at school and, maybe, at home. Almost three years ago, when my daughter was born with special needs, I found out that I was very wrong! She was born with a genetic condition called Larsen's Syndrome which caused her to have multiple physical abnormalities.
See, special needs kids don't just need a little extra help at school and at home. Sometimes they have doctor and therapy appointments… A lot of them! For nine weeks after my daughter was born, we were at the orthopedic surgeon's office once a week for serial casting to correct her feet and knees. Then we were there once a month until she was six months old and had her first surgery, and then every three months after that. Starting at four months old, we were at the neurosurgeon's office every three months for an MRI or x-ray of her spine. Starting at six months old, she began physical therapy at a local nonprofit group that provides early intervention services to children with specials needs. She was there twice a week. Then we had an early intervention therapist come to the house twice a month for physical therapy. Starting at fifteen months old, we went to private physical therapy once a week. At about 18 months old, she started seeing a GI every three to four months for reflux and slow weight gain.
So there were some months when we would have sixteen appointments to attend. That is over half the days in a month dedicated to my child's needs. Did I mention I'm in school too? Yeah. Talk about hectic!
Fortunately, as she has gotten older, the appointments have lessened. We now see the ortho only once a year (contingent upon how well she is doing). Private physical therapy is every other week. Therapy at the nonprofit organization is just once a week now. In August, she will be going to preschool two days a week for three hours a day, and the therapy at the nonprofit organization and home therapy will stop.
Gone are the days that I thought a special needs child only needed extra help at school and home. I wouldn't change it for the world though!
