An op-ed piece recently appeared in the Washington Post. Here is an excerpt that reflects my same feelings.
Here’s my fervent hope: that calls for universal prenatal screening will be joined by an equally strong call for providing comprehensive information to prospective parents, not just about the tests but also about the rich and rewarding lives that are possible with disabilities. If physicians and genetics professionals are willing to learn from people with disabilities and their families, they can disseminate the nuanced, compassionate message at the core of diversity and human rights: All people have value and dignity and are worthy of celebration.
It took us a few years to reach the conclusion that our son with Down Syndrome also has autism spectrum disorder. He was reaching developmental milestones up until 3-4 years of age and then actually seemed to regress in areas of eating, communication and socializing.
I wish we had seen an article like this one on the Kennedy Krieger web site back then 12 years ago. It really rings true for us and I hope others will find it useful.
Great article on the Kennedy Krieger website
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!