[blindkid] Help with PT and OT Meeting

Mon Mar 26 10:14:21 UTC 2012

Ellie is completely blind with no light perception. Thank you for your help! I must have missed the conference email. Is there a link? 

Sent from Sarah's iPhone

On Mar 26, 2012, at 2:23 AM, Richard Holloway <rholloway at gopbc.org> wrote:

> You mention her head staying down for her toys, but that she has been blind since birth. Does she have some residual vision? If so, you may be right. She may be using a bit of vision to look for toys. Even a little vision might pick up on flashing lights or high contrast toys, etc. on the other hand, kids with no light perception or even just limited vision tend to tip their faces down pretty often. Our heads are heavy and poorly balanced. Babies can't keep their heads up much at all. The drive to look at things helps babies build neck strength as babies look up and around. Even when they gain more neck strength, blind kids and even adults need a reason to keep their heads up. For adults, the reason may sometimes be that they want to look more typical to those who can see them. Kids need a reason too, and just for holding a head up, rewards can be hard to offer apart for praise. 
> 
> We naturally turn towards a sound largely for the reward of seeing something. When that reward is not present, the instinct to turn is diminished. It sometimes remains to improve hearing the thing, or for some other reward, but to hear we may actually find better sound with our face towards the sound but tipped up or down too much. Also, any asymmetry in hearing, even temporary, like from congestion, can cause a person to incline a "better ear" to the sound instead. It is actually fairly complicated. Limited vision itself can also cause atypical facing to favor a better eye or best area of vision.
> 
> We had PT and OT and all of that as well. We were worried we might fall behind. Unfortunately, we realized that bad therapy can be worse than none at all. Our daughter, now age 9, has no light perception. She too had really bad responses to hand-over-hand. It doesn't matter how convenient that may seem for a therapist, teacher, etc., if it upsets the child it needs to be stopped at once. Some kids will still respond to hand UNDER hand, if that is the right term still. In that case, you're not manipulating the child's hand, you are inviting the child to feel what you are doing with your own hands.  With control to stop at any time just by lifting their hands, some kids respond a lot better. Even at age 9, our daughter still dislikes hand over hand, but has learned to tolerate it in some cases, especially when she trusts the person manipulating her hands. The main time I use it now is in chess club with her, when she gets too frustrated to keep finding the right pieces and squares. I also have a few key words  if we are working on a project, for example, I might say, "pointer", and she will point, and I will put her finger (usually by moving her forearm) directly on something she needed to locate, then she can explore from that point. Or "pinchers", and I'll help her grasp some small tedious item for further study. Obviously, that sort of thing comes later, and has limited application. At 18 months, hand over hand would NEVER have worked. She would have been furious! In all cases for us, a little hand over hand goes a long way...
> 
> One other thing that I remember doing in lieu of hand-over-hand early on was helping move her arms gently at times to help her hands "bump into" objects of interest, and if there is no vision in play at all, sometimes objects can magically move towards their hands at first. Her hands might bump into a musical toy, then after a few times of that, the same toy makes sound near her so she can reach and make the sound herself, for example. Long term that's probably a bad idea, but short term, you're trying to help hands find something to reinforce attempts as opposed to having the child quit in frustration. Especially until you can start to use verbal cues (to your right, a little higher, etc.) you do whatever works.
> 
> Hand-over-hand is really where I think the disconnect might be with much of what you describe. This is not about how they can force your child to comply with their methods and demands. This is about finding a way to entice a child to WANT to PARTICIPATE with them.
> 
> In every situation where a sighted kid would be motivated by visual feedback, like a sighted child finding a happy face in response to an action, or seeing a favorite toy, or a pretty picture, etc., the blind child needs an appropriate motivation. It does sound like alternative therapists may be in order, and whoever is working with your daughter needs some experience or at least an openness to reading materials and trying things like what Deborah referred you to already. 
> 
> One thing we found was despite hearing about all of the possible, even "probable" delays, once we got started, a LOT of what seemed like stalled progress quickly got on track, so please don't panic. 
> 
> If you are able to get to the convention in Dallas this summer, there will be a LOT of great information for you there. If there is any way you can get there, please try to give it a shot!
> 
> Good luck,
> 
> Richard
> 
> Sent from my iPad
> 
> On Mar 25, 2012, at 10:26 PM, Sarah Dallis <sarah.dallis at gmail.com> wrote:
> 
>> Many of you might not remember me, my daughter Ellie, is 18 months old and
>> has been blind since birth. She doesn't walk, crawl, or stand, but she did
>> recently learn how to sit up on her own. She has also started laying down
>> more, I think she's tired of sitting on her butt all the time so she'll lay
>> down and roll back and forth (carefully not to travel too far). She doesn't
>> eat either, she gets pediasure and we have been working with speech for
>> feeding.
>> 
>> I have a meeting on Tuesday with her PT and OT, neither are experienced
>> with blind infants. I have called the meeting to address some concerns I
>> have. A few specific concerns are the fact that I can't hold her hand
>> anymore because of their hand over hand "therapy" methods from before
>> December (they have since stopped hand over hand). Also, she no longer
>> stands, my husband and I were able to get her to stand for 60-120 seconds
>> if she was leaning on us or something. Once we showed her PT and they
>> started working on it, she will go up to stand but promptly plop right back
>> down on her tush. I sent them an email in December with new therapy
>> methods, ideas, and resources for them to go to and they have never
>> discussed their findings or thoughts with me on the email, just pushed it
>> to the side. And finally, they do not have any suggestions for adaptive
>> equipment. I'm not sure if this is common but she keeps her head down the
>> majority of time, because that's where her toys are and where she usually
>> plays.
>> 
>> Based on this and the experiences you all have, does anyone have any
>> suggestions/ideas I can take with me into this meeting. Maybe it won't be
>> any help, but maybe it will. I also have my insurance getting us a second
>> opinion referral to a new therapy place because I'm so frustrated with this
>> one. I'm ready to completely fire the PT even if I'm not impressed with the
>> new place
>> 
>> And some additional info is that my husband and I are both active duty
>> military (I'm desperately trying to separate to be home to help Ellie
>> more), and Ellie's therapists are in the same facility as her daycare (I
>> don't care for the daycare either). Due to the mission we're not always
>> able to make it to her therapy appointments and we have allowed them to
>> work with her while we're not there. They no longer have this permission,
>> except feeding. I just don't feel like I can trust them to not do hand over
>> hand or something that they already know is an issue based on the email in
>> December.
>> 
>> 
>> -- 
>> 
>> Sarah Dallis
>> 
>> Mom to Ellie: http://elliesgrace.blogspot.com
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