I have learned a lot from reading blogs written by Mommas of kids with special needs. I was reflecting on this as I went through my daily list of blogs today, and decided to write up some of what I've learned.
1. Down Syndrome is much more than mental retardation. I never realized all the medical problems that can accompany it.
2. Kids with a trach cannot smell or taste. Little Parker has weak lungs and can only go off of his trach tube for an hour every week. I can't imagine how overwhelming smells and tastes must be for him, and what it would be like to go through life without those senses.
3. Kids with g-tubes can have some major sensory issues once they are healthy enough to eat again. Michelle has posted some fantastic insights and tips about how to prepare kids to start eating via mouth again. I especially like her Eating Jar idea whereby her daughter Jacqui gets rewards for finishing all of her food and trying new foods.
4. I really need to get ahold of some Signing Time DVDs if the clinic at school doesn't have them. They break down walls for lots of kids.
5. As my Fluency professor told us, it really is all about the Benjamens. I have been appalled at the behavior of hospitals towards Parker and Rhett's families, calling and demanding large bills be paid out of pocket at that very moment while refusing to offer them any financial help. Let's think about this: medically fragile child, lots of surgeries, lots of doctor's visits and therapies, Mom staying home to watch after said child...probably not a 6 figure income here. Yet without these surgeries and doctor's visits and therapies, their children would not be alive. My supervisor for my observation hours told me that the most important thing is to provide a service for people who need it. End of story. Money is secondary to being able to communicate and eat and swallow without choking. No one should have to live in silence for want of a co-pay.
6. Always be on the lookout for communication opportunities. Sweet Maizie and her family communicate a lot through Webkinz, giving each other virtual gifts and sending each other messages. I never would've thought of Webkinz as a sort of augmentative communication, but it really works for her, and I enjoy reading about all the ways she finds to express herself.
I am really grateful to all of these families for giving me a glimpse into their lives...it has been the best resource I've found so far, and certainly the most entertaining and fufilling!
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4 comments:
I've been meaning to drop by here for ages now and tell you how fabulous I think you are :)
What a great way to start out your career, by taking a first-hand interest in the types of families you will soon be providing therapy for. You already posess one of the most important skills for a medical professional to have -- the willingness to listen. No matter what you do, don't lose that -- it's more rare than you would expect.
Thank you so much for your kind comments at my place. If you're interested, there is a great new blog that I have just started working with called 5 Minutes For Special Needs. We have a great team of parent writers and you are welcome to stop by and visit any time! :)
Keep up the most excellent work!
Hi! So glad to 'meet' you!
I wanted you to know that the vast majority of kids with Down syndrome are born healthy. Many need surgeries when they are young, but go on to lead very healthy lives.
Parker just happens to be an exception to that rule.
One of the reasons I blog and share about Parker is to let people know that a life with Ds.....even a life with health issues is still ABSOLUTELY worth living. So many fetal diagnosis' end up in termination because of the fears a parent may have.
And it sooooo doesn't have to be this way.
Keep up the good work!
*cheers on and waves flag!*
Thank you so much for mentioning my blog. All of the others you mention are wonderful and inspiring to me as well.
I am so glad you have been learning through reading blogs. I get lots of ideas from other families as well.
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