My daughter Ar'Kia is 6 years old she was diagnosed with Spina Bifida when I was about 5 months pregnant with her. She had her spine repaired 2 days after birth at four months she was diagnosed with Hydrocephalus which now she has a VP shunt she didn't had 6 surgeries. Ar'Kia is in first grade. She has no feeling from the knee down she has no control over her bowels and bladder she has Botox done on her bladder every 6 months.
Arkia loves going outside and playing with other children. There is not too much to do for children who are disabled and are in a wheelchair where we live at. My advice for parents of special needs children is to just love him or her. They need you. They are going to need lots of love around them. These children will need a little more attention than other children. They will have times that they feel they can't do anything. All you have to do is tell him and or her that they are normal and that they are special. They need to know that they can do anything they set their mind to do .