A good article appeared in the NY Times, ‘Just A Normal Girl’.
It tells the stories of developmentally disabled individuals, their families and college staff working to open college classrooms and campuses to cognitively disabled persons. The article is well done in that it doe’snt sugar coat the challenges involved.
Our lives have been in a whirlwind for the past 6 weeks and I haven’t had a lot of time to update the blog here. Donna’s mom broke her hip back in the beginning of April. We have been on the fence for the past year about moving in to take care of her. It’s a real balancing act to respect her space and dignity but also keep her safe and healthy. So the hip fracture forced the issue and here we are now all living together under one roof. She was in rehab for 3.5 weeks so we had some time to get some work done on her house and most of our belongings moved in. If that wasn’t enough I started a new job after being with the same company for 8 years. Shortly after this all hit my mom in New Hampshire experienced some serious complications following a specialized cornea transplant surgery for Fuchs Corneal Dystrophy. I may need to start blogging about parents getting older and caring for them!
Our son Matt (14 yrs.old Down Syndrome/Autism) had a real tough time with the move. We talked it up a lot and encouraged his teachers and staff at school to talk about it with him too. When the day came for the move we felt the best way to handle it is to take him to school, get his new room at the new house all setup with his personal stuff and just go there after school. We didn’t have the time to transition him and frankly I think that would have been more disruptive and confusing for him. Arghh!! The first few days were really stressful and we felt so bad for him. He would collect his “security” toys and belongings and wait at the front door to go home. We had a lot of lower lips stuck out, tantrums and lots of interrupted sleep. Slowly but surely as we all got into our new routines and he was back to the familiar surroundings of school he really settled in well. You can tell he is still waiting for someone to come out say “OK time to go home” but he is gradually marking out his new space and adjusting. We still have the other house and we are thinking maybe in mid-June taking him over there and letting him see the place empty. The good news is he has more space at his new home both inside and especially outside. At his “old house” we were right on a very busy street and he couldn’t go outside and freely play without close supervision. I went outside with him over the weekend and it was wonderful to see him be able to move around more independently.
We just received some great news last Friday. We had a special meeting at Matt’s school with his current school district representatives and the new school district we moved to. We were really nervous that the new school district wouldn’t fund the placement at his private school that he has been at for 9 years. We went “well armed” and prepared. We had a education advocate from our county advocacy organization (The ARC of Delaware County) attend the meeting with us. Everyone was in agreement that Matt was where he needed to be and the new district will be funding his placement. Sweet!
Donna’s mom is doing real well and regaining her independence. My mom is still struggling with corrective surgical procedures for her eye but our Aunt Jeanie who had come up from Florida to care for her through the surgery has been tremendous. My new job is going great. I’m working with some great people and I feel like I’ve landed in a good place. Donna as always continues to be the rock of the family, managing to keep all of this together somehow.
I can’t say enough about how wonderful all our friends and people at Matt’s school have been. They have been tremendously supportive and helpful. I don’t know what we would have done without them. We really are so thankful to have such wonderful friends who care so much about our family.
Matt is smiling more each day and continues to bless our lives in so many ways. I think this change is going to do us good!
We read two stories this week that highlighted for us the positive messages of inclusion, good parenting, a caring community and supportive educational system.
The first article about a young lady with down syndrome from our neck of the woods, Allentown PA. The Morning Call web site ran an article about Briana Dunn who was the first child in the Council Rock School District with Down Syndrome to be main streamed. This is a great story to read about a successful young lady and a wonderfully supportive family.
The second article is about a young lady with Down Syndrome. She died in November of heart problems associated with Down syndrome. The article that appearred in the Commercialappealonline.com web site from Memphis highlights the remarkable life of this 25 year old self-advocate who accomplished so much in her short 25 years.
Read a great article today at the DailyRecord.com website . What started out as a grassroots effort with 4 parents in one town in New Jersey is “now in demand statewide — for integrating children with special needs into their communities.”
“With persistence and creativity, these parents, all volunteers, have raised $180,000 since 2003 and created 32 recreation programs in Montville. Roughly 150 children with special needs, ages 3 to 18, from 27 area communities, have been given the chance to play sports, dabble in arts, go to the movies and have play dates with other children. And nearly 1,400 nondisabled children have been trained as mentors to work and play with their children.”
It’s great to come across these positive energy stories. Makes my day!