[akg1229]

My Dh aqnd I are looking into adopting a little boy we will be meeting very soon. This little boy is Deaf, Blind, and Non-verbal. He makes out people better than objects, we know, but they won't tell us until we do the meet next month about how bad his hearing is. He is also confined to a wheelchair. So my questions are
1: has anynoe had experience with Choclear implants, how well do they work? and 2: If he is not an implant candidate what are some activities my husband and I could do with him to make him feel a little independent and allow him to have fun. We are already looking into a specialized net swing for full body support swinging. Any other ideas for stimulation?

[momraine]

Hopefully you will be able to talk to his current caregivers soon and they can tell you some of what he likes. I would think he would enjoy toys and books with different textures to feel. You will need to also find out where he is developmentally. I would also invest in a rocking chair if you don't have one, rocking with him in lap will be good for bonding.

[crick]

I have a cochlear implant and love it!

As for how well it works, it all depends on the level of loss one had, age, and ability to adapt/learn.

I was 2.5 when I lost most of my hearing and was verbal before that loss. I grew up losing more and more of my hearing and then decided to get the implant at age 34. It's really opened up a whole new world for me and I know I made the right choice for me.

I have heard that for some adults who were completely deaf before getting the implant, their frustration level was much higher and some hate it. It's very overwhelming to have all these sounds in your head that you can't identify and have to literally teach your brain what they are. So for some adults, they really wish they had never gotten it. I know that they do say for children, it's often "easier" (not that it's easy, mind you" to train the brain since they are more in the developmental stages of learning and it's much easier to adapt.

How old is the little boy? Without knowing anything on his level of hearing or what type of loss he has, it's as you say a waiting game right now to see if he'll qualify for the implant. As soon as you know his details though I would be visiting a qualified audiologist to discuss the possibility and go from there.

Do you know if he's non verbal due to the hearing loss or because he's never been in speech therapy or ??

Feel free to ask more questions if you like and if you need any recommendations for cochlear info or audiology info, just pm me.

[peregrinerose]

What is the vision impairment from? Not all 'blindness' means seeing nothing, there may be something to work with there too.

[Nevada Jen]

I think you need a lot more information to know what you are dealing with. I hear they are saying the reccommended age for getting an implant is between 6 and 9 months if the child is born deaf. One of the girls on my daughters baseball team got the implant at age 22 and does not seem happy with it. But it does allow her hear danger sounds that she could not hear before so it has made her a little more independent. I think it would be significantly harder to learn to use it if you had other disabilities.
Blindness may not mean he can't see. The President of our Easter Seals is "blind" and he is able to read with an enlarger and can see well enough to identify people.
As for activities, it depends on his age. My daughter participates in Challenger Little League. Its starts at age 6 I think. There are kids of all abilities there and it a good place to meet local parents of older kids who can help you work your way through the system because the teams are totally age mixed. You might also consider getting on the waiting list for a companion dog. The wait is usually years long. My DD is a big fan of the trampoline and bounce houses. Also when she was younger we had a zebra bouncing rocking horse that had a support on it that she loved. SHe also has a hand/foot powered trike that has gotten some good miles on it. If you want to pm me details about your soon to be son, I can give you some other ideas.

[akg1229]

The little boy we are looking to adopt is 7. From my understanding of everything thats going on ... he has had hearing in the past, and he sees a little but not very well. The rocking chair and challenger sports are both excellent ideas thank you.

[Nevada Jen]

I just wrote you the longest pm in the history of the world but the other thing we have done for independence is DD sleeps in a regular twin bed. Instead of a box spring we used a bunky board to keep the bed low so she can crawl in and out of bed on her own. She has low shelves all along one wall with her books in them and a tv and CD player that she can access. Before her last stroke she would crawl out of bed and down the hall to wake us up in the morning. Once when we lived in a two story house, she went down stairs on her own. Climbed up on the couch and was pounding on the bay window saying "let me out!!" It was one of the funniest things I had ever seen (once I got my heart beating again!) She never uses a wheel chair in the house. She crawls or gets carried. You might want to see if your state has a school for the blind. My experience is that unfortunately a lot of the adaptations for blind people use hearing instead of sight.

He can probably build things with legos (you might want to start with the toddler sized). Set up and play with train sets. I know our set (made for collectors) has a vibration to it as the train goes around. He could garden or plant herbs, which might be fun for him. I suspect you can teach him basic cooking. Wow! I am totally full of ideas!

[peregrinerose]

Exactly what are the hearing and vision diagnoses? (I'm a low vision optometrist, so can probably help quite a bit with information and resources for the vision end of things). Is he nonverbal due to the hearing loss or due to cognitive problems? Does he sign?

[akg1229]

The non verbal is due to his cognitive level. I know he can see some, people more than things, but I don't have exact percentages. The thing I am confused about, and will hopefully understand more once I have met him, is why he is not wearing any type of nglasses or hearing device or anything like that.

[peregrinerose]

That's exactly why I'm hoping you can give an eye diagnosis. See if he's had a low vision evaluation.... that gives a great handle about what he can and can't see, if glasses are appropriate, and how you as parent can help him maximize the use of his vision. With a diagnosis, I can probably give a few general pointers to get you started. For example, with macular disease, you'd want to work with his side vision, with retinopathy of prematurity, his visual fields may be very patchy, so more with central vision. Some diseases do better with certain kinds of lighting or tints for glare control than others.

If he's never had a low vision eval, most states have a blindness department that will provide these things at no cost for people that meet their vision and income qualifications (and it sounds like he'd qualify). If that doesn't work, local Lions Clubs are often fantastic with stepping in for cases like this.

[Nevada Jen]

I am not terribly suprised he does not wear glasses. The blind Pres of our Easter Seals does not wear glasses. I guess his vision is so bad they don't help enough to make it worth it. Still he could see to walk across the yard and up to our front door for the first time and reach right for the handle. I am excited for you!

[peregrinerose]

Originally Posted by Nevada Jen

I am not terribly suprised he does not wear glasses. The blind Pres of our Easter Seals does not wear glasses. I guess his vision is so bad they don't help enough to make it worth it. Still he could see to walk across the yard and up to our front door for the first time and reach right for the handle. I am excited for you!

Glasses are actually completely unrelated to eye health. Vision impairment is from a health issue, needing glasses are purely a physics issue. If light focuses on the retina and the lens inside the eye changes shape to change focal point from distance to near well, then glasses aren't needed. If the size and shape of the eye and it's refractive surfaces aren't in coordination, then light focuses in front of or behind the retina, that's when glasses are needed.

So, for someone with a vision impairment due to say macular degeneration... if the physics are in line, then glasses wouldn't help them.

One problem I see is that a lot of docs (not low vision specialists) will looked at a diseased eye and not even bother correcting for whatever refractive error is there. I've seen patients who come in 'legally blind' due to whatever eye disease and walk out legal to drive a car just because I take the time to check every facet of the functional vision, including refractive error. It's so sad to me how many years of vision and visual functioning is lost in some patients due to skipping a really good refraction.

That's why I hope that the boy in question gets to a really good low vision doc... surgical/medical evals are very important and definitely should not be skipped, but a low vision eval gives so much information from a functional stance.

[akg1229]

I'm not sure of diagnosis but have a strong belief it has to do with other factors going on with him at the time. Thanks Nevada Jen I am really excited too. I have gotten so many awesome ideas I would have never thought if not for you guys. Thanks for your help.

[reetoreet]

My son has very similar issues. He has hearing loss, is blind, is non verbal, and cannot walk. I would absolutely look into a school for the blind. My son is 2 and we are enrolled in their toddler program now. He will start preschool there next fall and will graduate when he is 21. They have taught me sooooo much in the month that we have been working with them. They have more resources than I can remember and they have access to so many assistive devices. My son has Septo Optic Dysplasia, cortical blindness, is farsighted, and has nystagmus. Feel free to PM me anytime.

Jen-can you forward me those ideas too? Haha...