twenty-one.7
I'm sure you have seen the latest picture of our three kiddos--Alex is wearing a shirt that says, "Yes I Can!" It's among some of his great shirts--a few others say, "Current Family Favorite" and "Dinosaurs are Scary, Down Syndrome Isn't". It's amazing how a shirt with a great saying and his smile can just make your day. But, earlier this week, I asked Valerie to send me a picture of the three kids after school. I needed this picture because I was asked to be a small part of an upcoming Webinar discussing ABLE accounts. I'm always happy to help other families in anyway I can, so I saw this as a terrific opportunity. When the main presenter asked for a bio and picture, I quickly sent a bio I had written for something else and my business head shot. Then, I thought..."this isn't about me." This ABLE Account we have for Alex is for him. But, more than that, it is for his siblings too. See, we know some day, one or both of them will likely be responsible for some type of care of Alex. They will help him make some decisions. And, we don't want that to come as a financial burden to them. However, I know they would take on any form of responsibility if it were for him. Because the shirt that says, "current family favorite," well, Nora says it's true!
So, you might be wondering what an ABLE Account is. It's a super cool account that allows individuals with disabilities to save up to $100,000 without it affecting future benefits (such as medicaid, social security, and medicaid waiver funding). This is key. Because we want the same opportunities for Alex that our other kiddos will have. But, we understand he might need assistance when pursuing these opportunities. And, the main way for him to receive assistance will be through medicaid waiver funding. It is important for us to be proactive and think about these things now. My hope is that Alex will never need to live in a group home or receive supported employment services. But, history of his diagnosis indicates some sort of support will be necessary. So, we will be prepared and make sure nothing we have done to give him a brighter future will stand in the way.
Recently, my Grandma Sylvia has been in my mind a lot. It's just little things--like digging a bag I had taken some felt out of and thrown away back out of the trash and using it. Things like making Nora's 1st Communion Banner and hearing of a 1st cousin coming to visit. Things like receiving a voicemail from another 1st cousin that ended with "I love you." Grandma was so strong in her faith and love. She had no problem loving everyone. She raised 9 of the greatest people I know. Each of them unique, but the same in their generous and loving hearts. They are some of the "huggiest" people I know. And, they don't miss an opportunity to support one another. I think one of the biggest reasons I think of Grandma so often is because of this neat little story--. After we had Alex, a friend told me that my Grandma Sylvia and her grandma were very good friends. She told me she had an aunt named Sylvia who was named after my Grandma Sylvia. And, "her" Sylvia had Down Syndrome. She told me that my Grandma Sylvia was always so kind to her namesake. I often think of that story and that Alex may have been a gift from Grandma Sylvia. Then, I think of her and how she would have loved him. Oh, the yoga those two would have done!
In honor of World Down Syndrome Day, Rob and I bought several books about Down Syndrome for the teachers at St. Joe to read to their classes. Last night, the five of us took a little drive for some ice cream, and I read the books to the kids. In one of the books, a family had 2 boys. The youngest boy had Down Syndrome, and the big brother was embarrassed by him. The big brother drew a picture of his family, but didn't include his little brother because he had Down Syndrome. My heart swelled with pride as I read that book. Pride because I can't ever imagine that being one of our big kids. Often times, Alex is their first thought when they think of our family. They both constantly put him first (even before themselves), and I couldn't be more glad. I think they might be wearing off on me because tonight I looked at the picture Valerie had taken and didn't see Down Syndrome. I saw three beautiful kids who resemble each other and have my Grandpa's (Alan) cheeks.
This entry is a little rambly, but I think when I started this blog, I thought it wouldn't be hard to come up with content. The truth is...IT IS! Alex is really no different and he can do anything he wants.
Don't forget to wear your Down Syndrome Awareness shirts (you all so generously purchased last year) and your crazy socks on Thursday (3/21) in honor of World Down Syndrome Day...and take a moment to educate someone around you about Down Syndrome! Thanks, as always, for reading--and until next time....Dinosaurs are Scary, Down Syndrome isn't!
So, you might be wondering what an ABLE Account is. It's a super cool account that allows individuals with disabilities to save up to $100,000 without it affecting future benefits (such as medicaid, social security, and medicaid waiver funding). This is key. Because we want the same opportunities for Alex that our other kiddos will have. But, we understand he might need assistance when pursuing these opportunities. And, the main way for him to receive assistance will be through medicaid waiver funding. It is important for us to be proactive and think about these things now. My hope is that Alex will never need to live in a group home or receive supported employment services. But, history of his diagnosis indicates some sort of support will be necessary. So, we will be prepared and make sure nothing we have done to give him a brighter future will stand in the way.
Recently, my Grandma Sylvia has been in my mind a lot. It's just little things--like digging a bag I had taken some felt out of and thrown away back out of the trash and using it. Things like making Nora's 1st Communion Banner and hearing of a 1st cousin coming to visit. Things like receiving a voicemail from another 1st cousin that ended with "I love you." Grandma was so strong in her faith and love. She had no problem loving everyone. She raised 9 of the greatest people I know. Each of them unique, but the same in their generous and loving hearts. They are some of the "huggiest" people I know. And, they don't miss an opportunity to support one another. I think one of the biggest reasons I think of Grandma so often is because of this neat little story--. After we had Alex, a friend told me that my Grandma Sylvia and her grandma were very good friends. She told me she had an aunt named Sylvia who was named after my Grandma Sylvia. And, "her" Sylvia had Down Syndrome. She told me that my Grandma Sylvia was always so kind to her namesake. I often think of that story and that Alex may have been a gift from Grandma Sylvia. Then, I think of her and how she would have loved him. Oh, the yoga those two would have done!
In honor of World Down Syndrome Day, Rob and I bought several books about Down Syndrome for the teachers at St. Joe to read to their classes. Last night, the five of us took a little drive for some ice cream, and I read the books to the kids. In one of the books, a family had 2 boys. The youngest boy had Down Syndrome, and the big brother was embarrassed by him. The big brother drew a picture of his family, but didn't include his little brother because he had Down Syndrome. My heart swelled with pride as I read that book. Pride because I can't ever imagine that being one of our big kids. Often times, Alex is their first thought when they think of our family. They both constantly put him first (even before themselves), and I couldn't be more glad. I think they might be wearing off on me because tonight I looked at the picture Valerie had taken and didn't see Down Syndrome. I saw three beautiful kids who resemble each other and have my Grandpa's (Alan) cheeks.
This entry is a little rambly, but I think when I started this blog, I thought it wouldn't be hard to come up with content. The truth is...IT IS! Alex is really no different and he can do anything he wants.
Don't forget to wear your Down Syndrome Awareness shirts (you all so generously purchased last year) and your crazy socks on Thursday (3/21) in honor of World Down Syndrome Day...and take a moment to educate someone around you about Down Syndrome! Thanks, as always, for reading--and until next time....Dinosaurs are Scary, Down Syndrome isn't!
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