#4 How Do I Decide What To Share?

Day 4 of the blogging challenge asks, "How Do I Decide What To Share?"

Helpful
I try to share information I think will be helpful to other families. There really aren't that many families with blind children around that I can call for advice. I couldn't just ask another mom I know about their child's recovery after g-tube surgery because I didn't know any other mom who had a child with a g-tube. Through online communities I have found a couple families in my area that I can contact and that is so nice. To actually meet someone who has walked a similar road is just immensely comforting.

Blindness is a low incidence disability so online communities are a great place to start making connections. That's where I went for information, resources and questions when I first had Tommy. I still use them constantly.

I try to write blog posts about what Tom is doing and how we handle his unique health care concerns.  I began searching for information about blindness when Tom was born and I could not find much real information about how families with blind children live.

His first burger.

Everything is just a little more challenging when you add blindness to the mix. You can find information on feeding therapy but you can't find information on feeding therapy for blind children. A lot of the techniques therapists use don't apply to blind children. He can't see the spoon coming so we have to find other ways to give him clues and break down his defensiveness. We load up the spoon and tap it against his hand. This allows him to take the spoon and put it in his mouth. This puts him in control; he feels more comfortable and we have found it increases the amount he eats.

Feeding therapy at the Children's Institute of Pittsburgh

I share lots of information about Tom's feeding therapy and eating because this information is not well represented online. Read about Tom's feeding therapy journey - Eating by Mouth and by Tube, G-tube Guide, Big News.

Tom playing a music app.

New
iPads are a new technology and they have been embraced by the special needs community. Since they are accessible out of the box for blind users and cost MUCH less than specialized equipment they are a really attractive option. Tom got an iPad for his second birthday (a family and friend funded surprise!)

We use the iPad to entertain Tom in waiting rooms and during the time you spend waiting for the doctor to enter the exam room. Playing jazz or symphony music also helps distract Tom during physical exams or brief procedures. It has made doctor appointments so much easier!

Tom is a big fan of Dr. Seuss thanks to the book apps on his iPad that auto advance through the pages. He just sits back and listens or taps the screen for the interactive books. He has games too. Eventually the iPad will become more of a formal learning tool but for now it's more for fun. I like that he has the opportunity to get comfortable with technology at a young age. The iPad is a tool that can grow with him and we will only learn how to use it better for him as time goes on. Check out our iPad and App page.

Sleep!

What I Wish I Knew Beforehand!
I write about the things I WISH I could have found out about earlier.

Tom was an awful sleeper! He would be up and ready to rock until 2 or 3 in the morning. Luckily I was a stay at home Mom then so we could function on that schedule, but it made morning therapy or doctor appointments rough. I heard about Melatonin but when I asked his pediatricians about it they did not want to add any more meds to his regimen because he was on diamox for his glaucoma. Patients on diamox have to be watched carefully so they were being cautious.

It took months to get Tom's glaucoma under control (he was only on diamox for a couple months) and it was another year months before I asked about trying Melatonin again. The second time I asked about trying Melatonin they said sure. It is not an exaggeration to say Melatonin changed our lives! I. am. not. kidding. I give Tom .6 mls of Melatonin and he falls asleep about 20 minutes later. He is in bed around 9:00 and wakes up at 7:00. I wish I wouldn't have waited so long to ask about Melatonin again because it has been such a blessing for us. Read about the Great Sleep Experiment - Part 1 and Part 2.

Please leave me a comment if you have any questions. I love to hear from you!