Since Max was a baby, I've been very open about what happened to him. Sometimes, it unnerves people how easily I can say, "He had a stroke." Marcela over at Pray For Nathan has come up with a card that she is thinking of handing out to people about her son. I think it's a great idea.
I've been a member of The Pediatric Stroke Network since the second week of Max's life. For the last few years, some member in the group has put together a quilt with faces of children who have had strokes and their birthdates. It circulates around the country from parent to parent, in hopes of raising awareness about pediatric stroke (it occurs in about 1 in 4000 births, so it's not as uncommon as you may think). We're in possession of the quilt now; that's Max looking at his picture of himself on it. Our local newspaper did a story about the quilt and Max, and I was really happy to do my bit to help.
I'm awed by the handful of moms in the network who have gotten tattoos to raise awareness. Jessica, mom to adorable Brendon, got a tattoo on her right foot, the same side her son's stroke affected him. I was was very touched by this video of Jessica getting her tattoo.
I will probably not get a tattoo in this lifetime, but I think it is really important to educate and inform other people about our kids. Agree?
100 % agree
ReplyDeletei agree...i loved the article.
ReplyDeleteMoms are the best advocates a kid can have :)
ReplyDeleteAgreed... And as a teacher (martial arts, JUDO), I try to educate my students about others needs, be it our friend Cole who has CP (participates in karate), or my own visual disability.
ReplyDeleteI want my students to be good citizens too... To not make fun of people or kids that are different. To help kids like Max or Cole if they need assistance, and be a good friend.
I am very open whenever anyone asks...I totally agree about raising awareness.
ReplyDeleteSorry again, just wanted to add; "For My Brother Joey" Joey and Nicholas Lombardi, make buttons that say "I'm not misbehaving, I have autism, please be understanding."
ReplyDeletehttp://tinyurl.com/byrtlb
Great concept!
Love the quilt - what a great idea.
ReplyDeleteI think raising awareness in whatever way possible is brilliant.
I think most failure to accept is borne from lack of understanding and fear of the unknown. I believe the more people understand, the more accepting they become.
I guess the need for education is neverending, as I often thought of having t-shirts made with various pithy slogans, to address some aspect of the public's ignorance...and this was 25 years ago! I will say that it was always easier to educate folks about visible disabilities, such as CP, than less apparent problems like Tourettes. And, yes, I'm finding that it does unnerve people how easily I can say, "He has schizophrenia," especially since serious mental illness bears such a stigma. I continue to learn...
ReplyDeleteI teach special education and I often have my students (or staff with them) hand out business cards that say something like, "Hi, My name is _____ and I love it when you say hello to me. My cerebral palsy makes it so I need a full sixty seconds to respond, so if you have time feel free to say hello, if not maybe next time!" or "Hi my name is ______. I have a mitochondrial disease that makes it difficult for me to walk and speak, my teacher knows I am driving my power chair in the hall alone. I am fine. I know where I am and how to get back. If you have any questions please call x1111, but if I need help I will use my computer to ask someone."
ReplyDeleteSince I have started using these cards our lives have become so much easier! I hear general ed teachers who are "in the know" telling other teachers or staff all about my students and it is "just" information from the cards. Such a simple way to share accurate information and diffuse situations.
* K, thanks for stop by! I like the wording on your cards. That's a good idea.
ReplyDelete* Galen, it really is a neverending journey.
* Torina, you are so right, we are our children's best advocates. I have the biggest mouth when it comes to Max!!!
Hi Ellen, thanks so much for stopping by the Communication Therapy Blog, it was great to hear from you! This looks like a wonderful blog about your son, and I'm looking forward to reading more.
ReplyDeleteI was suprised to hear that Strokes happen 1 out of every 4000 births. That means my child had a 6times greater chance of having a stroke rather than Spina Bifida. Yet I knew all about SB and the benefits of folic acid, but nothing about strokes. Why? Because of the lack of research, and because there isn't much they can do. There may be nothing they could have done to help Jude, Max, or any other child ever, but I am beginning to wonder if running simple blood tests like the Factor V wouldn't help other that could have this happen. It may not help in our cases, but it could help in so many others
ReplyDeleteI have also been thinking of getting little business cards directing people to the CdLS foundation website. However, I do carry around brochures, but have yet to give one to anyone but a therapist.
ReplyDeleteI think it would be especially helpful to educate children from preschool ages through college about disabilities and acceptance. Although I don't know quite how...
what a beautiful quilt with a beautiful message!
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