Hello,
I'm new to this wonderful forum. Our 14.11 y/o son MJ has autism, a severe lifelong neurodevelopmental disability which primarily affects their ability to communicate, play, make friends, and handle the environment. Over the past 9 months MJ has developed a rapidly progressive scoliosis condition. MJ also has colitis and now weighs 102.5 lbs! He is verbal, and considered high-functioning. He understands pretty much what is going on.
Bracing wasn't recommended by a previous pediatric orthopedist. Rather, a wait and see approach was recommended for six months. Maybe he was concerned MJ would not tolerate wearing a brace. Six months later, we learned the curve had more than doubled. We were told it was too late to wear a brace and surgery was recommended.
While seeking a second opinion, we found a pediatric orthopedic surgeon who specializes in scoliosis and accepts our insurance. He really connects with MJ, supports our family and has good chemistry with us. The hospital staff also treats him with dignity and respect. This is a very important factor for us.
A recent MRI which MJ was put to sleep for, finds the curve well over 50 degrees. MJ is scheduled to have surgery on June 20th at Mount Sinai Hospital in NY. The surgery will be a "fusion with instrumentation from T-4 to L-2, perhaps shorter." Bending films find him to be "extremely flexible." His surgeon explained to him a need for four weeks of Procrit shots to help prepare his body for surgery, and for pain meds afterwards he can self-manage by pushing a button. The first shot will be on Tues.
MJ asked a friend (also on the autism spectrum) to draw a self-portrait of him defeating scoliosis. He told his friend what to draw and which words to use. MJ asked me to give the cartoon to his doctor -- before the surgery. He can clearly visualize his "defeat over scoliosis" and wants his doctor to visualize it too. MJ seems to be handling this so far with humor and courage. He travels over 120 miles to/from school daily (1 1/2 hr.) each way. I know he's looking forward to having no summer school and possibly beyond this year. I'm not sure what else to tell him about the recovery process. As we get closer to the 20th he'll probably get more nervous. Is it possible for him to have a mild sedative the night before and morning before going into OR? Our family, including two of his three adult sisters (took vacation time) and will stay at the hospital's guest residence for the week. I plan to be with MJ as much as possible. I'm sure my husband will too.
We are four weeks away from the big event. Personally, I have good days where I am counting our blessings, feeling confident, grateful there is treatment for this disease, arranging for supports and services. Then there are bad days when I am filled with uncertainty and panic. My husband and daughters seem to be more at peace with all this. Although Crystal did say her heart dropped after a trip to Wal-Mart to buy items for the hospital/home.
What I really need is your support, suggestions or any advice you could give me to help us prepare MJ for surgery and during the recovery process. How did you cope while your child was in surgery, and afterwards. I've read the Preparing For Surgery suggestions. We're using this helpful guide as our checklist. I'm sharing what I learn and experience on a new blog, www.autism-and-scoliosis.blogspot.com. Hopefully other parents of autistic children needing surgery can be helped by our story. Thank you for reading my long post!
Wanda
A Child With Autism Can Get Their Needs Met...
From Preschool To Adult Services
www.child-autism-parent-cafe.com
Practical ways to help, plan and manage daily living with autism
I'm new to this wonderful forum. Our 14.11 y/o son MJ has autism, a severe lifelong neurodevelopmental disability which primarily affects their ability to communicate, play, make friends, and handle the environment. Over the past 9 months MJ has developed a rapidly progressive scoliosis condition. MJ also has colitis and now weighs 102.5 lbs! He is verbal, and considered high-functioning. He understands pretty much what is going on.
Bracing wasn't recommended by a previous pediatric orthopedist. Rather, a wait and see approach was recommended for six months. Maybe he was concerned MJ would not tolerate wearing a brace. Six months later, we learned the curve had more than doubled. We were told it was too late to wear a brace and surgery was recommended.
While seeking a second opinion, we found a pediatric orthopedic surgeon who specializes in scoliosis and accepts our insurance. He really connects with MJ, supports our family and has good chemistry with us. The hospital staff also treats him with dignity and respect. This is a very important factor for us.
A recent MRI which MJ was put to sleep for, finds the curve well over 50 degrees. MJ is scheduled to have surgery on June 20th at Mount Sinai Hospital in NY. The surgery will be a "fusion with instrumentation from T-4 to L-2, perhaps shorter." Bending films find him to be "extremely flexible." His surgeon explained to him a need for four weeks of Procrit shots to help prepare his body for surgery, and for pain meds afterwards he can self-manage by pushing a button. The first shot will be on Tues.
MJ asked a friend (also on the autism spectrum) to draw a self-portrait of him defeating scoliosis. He told his friend what to draw and which words to use. MJ asked me to give the cartoon to his doctor -- before the surgery. He can clearly visualize his "defeat over scoliosis" and wants his doctor to visualize it too. MJ seems to be handling this so far with humor and courage. He travels over 120 miles to/from school daily (1 1/2 hr.) each way. I know he's looking forward to having no summer school and possibly beyond this year. I'm not sure what else to tell him about the recovery process. As we get closer to the 20th he'll probably get more nervous. Is it possible for him to have a mild sedative the night before and morning before going into OR? Our family, including two of his three adult sisters (took vacation time) and will stay at the hospital's guest residence for the week. I plan to be with MJ as much as possible. I'm sure my husband will too.
We are four weeks away from the big event. Personally, I have good days where I am counting our blessings, feeling confident, grateful there is treatment for this disease, arranging for supports and services. Then there are bad days when I am filled with uncertainty and panic. My husband and daughters seem to be more at peace with all this. Although Crystal did say her heart dropped after a trip to Wal-Mart to buy items for the hospital/home.
What I really need is your support, suggestions or any advice you could give me to help us prepare MJ for surgery and during the recovery process. How did you cope while your child was in surgery, and afterwards. I've read the Preparing For Surgery suggestions. We're using this helpful guide as our checklist. I'm sharing what I learn and experience on a new blog, www.autism-and-scoliosis.blogspot.com. Hopefully other parents of autistic children needing surgery can be helped by our story. Thank you for reading my long post!
Wanda
A Child With Autism Can Get Their Needs Met...
From Preschool To Adult Services
www.child-autism-parent-cafe.com
Practical ways to help, plan and manage daily living with autism
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