Monday, June 10, 2013

California Deaf-Blind Services

So last week we had a lovely visit from two very nice lady's from the California Deaf Blind Services.  They met Ryan and stayed to watch and learn about him, in addition to talking with a few of the therapists who work with Ryan.  They try to come up with recommendations for everyone to help Ryan understand his world and adapt to living with fewer senses available to him.  They stayed for 2 hours and gave us some really great ideas that I'll try to summarize here in case anyone else is looking for ideas for their own kids:

1. Introduce toys or objects made from different materials so he has a more diverse tactile experience, for example, wood, metal (e.g., mixing metal bowl), or a soft brush.

2. Include activities that encourage face-to-face interaction in every work session. Following is an article, “Early Interactions with Children Who are Deaf-Blind,” that expands on this recommendation. It also includes other strategies that may be useful for Ryan:
3. Include “infant massage” in Ryan’s routine. This may help with his need for proprioceptive stimulation and may encourage a deeper connection between his parents and him. CDBS published an article on this topic, “Infant Massage for Babies with Sensory Impairments,” which can be found at

4. Redirect Ryan’s attention to another activity when he is softly hitting his chin or his head. If this action increases when he needs to sit for a long time, such as at feeding time, have an exercise session with him beforehand so he can release any extra energy and be a little more relaxed when he is sitting down.

There were a few other suggestions that were more specific to Ryan, but I felt like these 4 could be helpful to anyone else out there looking for more information on working with deaf/blind children.  I will proudly add that they were very impressed with how well he was reaching out for objects, grabbing things with both hand, and bringing them to mid-line.  They also commented on how active he is, always rolling around, grabbing his feet, even doing his bridges (he loves to arch his back and get up on his head and tippy toes in the bridge position).  The best part was when I picked him up and put him in my lap, he turned right away and looked up at me like he knew exactly who I was.  They noticed that right away and said, "Oh look, he recognizes his mommy!"  I know that seems strange to be excited about.  With a full term baby, that sort of behavior would be a given by now.  But with Ryan, it was a huge milestone.  I really feel like the past week or so he's been started to look more at my face and realize that I'm someone different than everyone else.  He is also getting really good at snuggling and cuddling.  He'll reach his hands out when he knows he's about to get picked up, and then when I get him up on my shoulder he will put both his arms around me and rub my arm.  Such a huge improvement from when he used to just arch his back and try to wriggle away from anyone who tried to hold him. 

We discussed how hard it was for the first few months after he was home.  We really felt like we were walking on eggshells with Ryan.  He spent so much time in his chair getting his feeds, and his reflux was so bad we had to leave him sitting upright for another 30 minutes after the feed was over.  Then it seemed like any time we moved him he would throw up from the reflux.  So, unfortunately, he spent a lot of time in his various seats or on his back.  I know looking back, we really couldn't have done it any differently because he was so medically fragile back then.  Now that flu season is over and his reflux has improved, we are able to do so much more with him.  We've been taking him out every day of every weekend and are really looking forward to summer when we can do it daily.  You can tell that getting out of the house and being more active has helped him improve immensely.  We still have a long road of development to go down, but we are very hopeful for our little man. 

We also have the House Institute appointment set for this week on Wednesday.  This will be the initial consultation with the doctor who will hopefully do the procedure for the Cochlear Implant.  I had a great conversation over the phone with a really kind and helpful friend of a friend who also has a son who wears CIs.  She gave me some really great advice and helped me create a list of questions to bring in to the first appointment.  I'm really looking forward to finding out more, and I'll update as soon as I can.  Any prayers for a good appointment would be greatly appreciated!

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