[blindkid] Questions About Adopting Blind Child from India

Sun Mar 18 16:15:35 UTC 2012

I would avoid the melatonin if possible. Maybe save that for a last resort. Our daughter has no light perception at all. At one point, for nearly two years, she was on roughly a 25 hour day. (Every day she would wake and go to sleep close to an hour later than the previous day.) After roughly 3 weeks, she'd have had one fewer day than her mother and I had, schedule-wise. Then the cycle would repeat. It was rough, and this went on for over a year-and-a half!

We finally learned of a sleep disorder clinic. The had us keep a "sleep diary" to chart her sleeping hours. Only after seeing the information collected did we really understand what was going on. We had been so confused and sleep deprived we had just never seen the pattern. All we knew was she would seemingly never sleep. The clinic suggested a light box, like what it often used in extreme northern locations like northern Alaska & Canada, for S.A.D. (Seasonal Affective Disorder). This condition effects typically sighted individuals durning times of the year when there is virtually no sunlight causing some people to stay sleepy and depressed. 

The doctor suggested using a light box for 30 minutes each morning. I refrained from telling the doctor he must be completely out of his mind for suggesting we put a light box in front of a child with no vision whatsoever. Turns out I'm glad I kept my thoughts to myself. We saw a huge change the first day we used the light box. That was nearly 8 years ago and we still use the box daily. Our sleep issues are gone.

Several times, we stopped for a few days or a week to she if it mattered, or when we went out of town and thought we could get by without it. Every time we try that, sleep issues seem to return. Apparently the light causes the pineal gland to produce more of your own melatonin naturally. It seems it can do this even if you have no light perception. In fact our daughter wears scleral shells. She has virtually no eye on one side and a fully detached retina on the other, with both of those fully obscured by her prosthetics, so there's just no way this works in our case because of light getting to her eyes.

These boxes can be prescribed and insurance may pay for them, but we learned after we got ours through insurance that you can order them on-line (no prescription needed) for a fraction of what they are sold by medical supply companies. Seems like ours cost about $600 through insurance and then we found the exact same box, as in same company and model number, for under $200 later. That company had apparently bought the same box and charged the insurance company over $400 to deliver it and plug it in. That's all the did!

I can't speak highly enough about what this did to help us and how easy it was to start using. There seems to be no real down-side apart from the expense of the box, and if you have a very bright sunny location you can get to every morning, you may be able to produce a similar result for free!

Good luck,

Richard 

On Mar 17, 2012, at 7:42 PM, Merry-Noel Chamberlain wrote:

> Arielle,
> We adopted a little girl from China who is blind - she has some very low vision.  We just kept her up during the day and soon she was on the right schedule.  It took a few weeks, though.  
> Merry-Noel
> 
> 
> ________________________________
> From: Arielle Silverman <arielle71 at gmail.com>
> To: blindkid at nfbnet.org 
> Sent: Saturday, March 17, 2012 5:32 PM
> Subject: [blindkid] Questions About Adopting Blind Child from India
> 
> Hi all,
> I saw this on another list and I know several of you have experiences
> with adopting blind children. If any of you have answers for Lisa and
> Gordon you can write to them directly at the email addresses they give
> in their signature. Or, if you prefer to respond on-list I can forward
> your responses to them. I did advise them to join the Blindkid list,
> but I think they ran into some technical problems.
> Thanks for helping them out!
> Arielle
> 
> ---------- Forwarded message ----------
> From: Gordon Shattock <gpstraveller at gmail.com>
> Date: Sat, 17 Mar 2012 13:10:49 -0700
> Subject: [LCA] Re: Jet-lag and LCA, assessment errors made due to
> vision impairment and our daughter is now home and settling in
> To: LCA at yahoogroups.com
> Cc: Gordon Shattock <gpstraveller at gmail.com>, "Lovely Lisa Lloyd
> (home)" <LisaCLloyd at gmail.com>
> 
> Hi Everyone!
> We are home from Bangalore, India with our beautiful daughter, Ana Reshma,
> who we just adopted. She has LCA. She is 4 1/2 years old. We have noticed
> that she is having a difficult time sleeping at night and seems to not have
> fully switched over to CA time, even though the rest of the family has done
> so several weeks back now, including our other 4 1/2 year old daughter. I
> have heard that due to her very limited vision (which seems to be only some
> light perception) that it is more difficult to get over jet-lag. Another
> adopting parent suggested we give her melatonin. Does anyone have any
> suggestions?
> When we took Ana Reshma to an audiologist in Bangalore the day after we
> took her out of her orphanage, she was diagnosed with a 40% hearing loss.
> We took her to an audiologist at Lucile Packard Children’s Hospital and she
> diagnosed her with the same level of hearing loss. We then thought she had
> ushers syndrome and not LCA. Well guess what? We had her sedated at the
> children’s hospital only to learn that both of her ears were so totally
> impacted with wax, and once that was cleaned out they tested her hearing on
> the ear drum itself and discovered her hearing was perfectly normal! What a
> relief that was! We are wondering if the fact that she is visually impaired
> made it difficult for them to access her hearing, and if her visual
> impairment might be challenging for other specialists to access her as she
> has a whole round of assessments coming up through the school system next
> month. In her hearing evaluation it seems that there must have been some
> assessment error due to her vision impairment as we were told that the wax
> impaction could only account for about 10 –15% of her hearing loss in
> total.
> Looking forward to hearing your thoughts...
> Warm regards,
> Lisa & Gordon
> lisaclloyd at gmail.com
> gpstraveller at gmail.com
> 
> 
> "I cannot do everything
> but still I can do something
> and because I cannot do everything
> I will not refuse to do something that I can do."
> Helen Keller
> 
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