Two year old who is profoundly deaf

[sbrinton]

My husband and I are in the process of adopting two little girls from Uganda. We're still trying to make sure we're ready to parent the older girl, Jane. She is nearly two, is HIV+ and is profoundly deaf. We've learned lots about HIV+ adoption and are ready for this, but feel unprepared for a child who is deaf.

One of our biological sons had a hearing loss so we've been through the routine at our children's hospital clinic and speech therapy, although his hearing improved a lot around age two. Jane's hearing loss is due to her mother's advanced AIDS during pregnancy. We're thinking she would be a good candidate for cochlear implants, but recognize our family will also need to learn ASL and to figure out out to communicate with this special little girl.

Any thoughts? What do we need to consider going into this?

Thank you! 

[kathteach]

I see you haven't gotten many replies yet, so I just wanted to give you some links that may help you out. I'm sure you already know about Project Hopeful and AHope, but there is also a yahoo group hiv+adopt and positivelyorphaned.org  The woman who runs positivelyorphaned, Bethany, is a huge advocate for hiv adoption and has many resources that might be able to help you out. She usually responds to emails pretty quickly. 

I hope you get more helpful replies, keep us updated on your process.

[~cassie]

I am not as well versed on hearing loss as some of our other mamas, who will hopefully provide you with more information than me.  I can only tell you what our story looks like.
 

We have a profoundly deaf 3 1/2 yr old.  He had NO access to language until he got his CI at age 1(activated at 15 mths).  It took about 6 months to get his first meaningful word(mama).  He got his 2nd implant at age 2 and that second one helped tremendously.  You do have to realize that a CI is not a miracle and suddenly the child has sound and all of a sudden talks.  It takes a lot of auditory training and you must go by their hearing age--for instance, my son is 3 1/2 but has only been hearing for 2 1/2 yrs and that is right around where his language is.  It can take time for them to catch up, and the older a child it, the longer it may take.  It helps if they already have some amount of hearing/language and then I think the process can be a little quicker with them learning language.  Sign language is incredibly useful-and we did use it a lot in the beginning but our son has mostly dropped it b/c he can get his point across with language.  We still use it some when he isn't wearing his implants---when at the pool, during bath, in the middle of the night, and in the morning when he first wakes up.

This is my blog if you would like to see my son and where he started and where he is now.  I haven't updated since right before Christmas but it is pretty accurate for where we are right now and where we have been.  http://www.aidanriley.blogspot.com/    If you have any specific questions, feel free to ask away.  I am on "weekend" mode and am a bit distracted.  Oh and you can check out CI circle, it is a yahoo email based group about implants with a ton of people more knowledgeable than me!

[PatchChild]

If there a school for the Deaf anywhere near you? Getting in contact with them in advance could be a really great resource for you. They can most likely also connect you with lots of other parents in the area.

[hdirks]

My daughter is profoundly deaf and has bilateral cochlear implants. She had surgery and was activated last June. With that being said, we JUST now got to the point where they are working. For some reason unexplainable by the drs her nerves did not respond at all to the implants after surgery or activation. We do know she is getting some sound now out of the right one but not speach sounds yet, if ever. Also, the left side shows virtually no response so they think she is not getting anything out of the left implant. My daughter also has developmental delays and a brain injury among other things so while we are learning ASL and signing to her, she is not yet able to sign anything and will be 2 in April. Right now she has no form of communication which is a struggle but we are constantly working out it to make that happen. This is not the norm for the surgery or response, but just wanted to share our story to let you know that it may not turn out how the drs say it will. You can only hope for the best.

I would definitely do your research on cochlear implants you will hear good and bad. Some people will definitely  criticize you if you decide to go down that route but ultimately you have to decide what is best for your child and your family. There is a lot of good support out there for parents of deaf children either way you decide to go. If you ever have any questions feel free to contact me. Good luck with your new little one! What a very exciting time :) 

[sbrinton]

When we first thought about adopting a child we special needs, we said we would be open to "correctable" hearing loss. One of our three sons had a moderate hearing loss on one side, so we thought we had a good grasp on the resources in our community to help a child with a similar level of need. I think we thought about hearing loss as a problem we could fix. It has been interesting to read more about deafness and how for many people, they do not see their lack of hearing as something to fix. They live rich, intersting, meaningful lives despite not hearing.

As we've thought about adopting Jane, who is profoundly deaf, we've had to think about whether we can be open as a family to all the unknowns. Although I know it would be hard, I feel it could be a rich experience for our family to learn ASL and other forms of communication with Jane. Being in the US, rather than in Uganda, would open up a new world for her - but having a deaf family member would open up a new world for our family too.

As we're thinking through this tonight (and we'll probably decide tonight whether to pursue adopting this sweet little girl!), I am seeing Jane's deafness differently. It's not something to fix or correct. It would be our job as parents to help her build communication skills to learn and thrive, whether or not cochlear implants are part of the picture...

[hdirks]

This is so true! It's not something that's fixable, but rather something you adapt to for her needs. Which ever way you decide to go I'm sure you will have her best interest at heart and that is definitely the most important thing.

[fairejour]

Would the team implant her and what are the risks with her HIV status? That would be a question that only your team would be able to answer.

In addition, you need to realize that more than two years without any sound is a really long time! She will probably like the new sound, but some kids don't...so then what? How do you communicate? Also, how do you make up for all that lost time? She will be greater than two full years behind! Activation is day one, just like a newborn baby. It takes over a year for the child to hear enough language for their first word (now your child is over three years old, and three years behind)...so you need a plan.

[LoriAtYCT]

Hi there!

I'm an SLP and worked a with hearing impaired kids a lot.

If she's two now, and has been profoundly deaf since birth, she'll really need access to language ASAP. If people have been signing with her (I hope so!) then she'll have a good start, but remember that ASL stands for American Sign Language, and that sign in other countries can be different.

But I worry that for a little girl with an illness coming from a country without a lot of resources, she may be very language delayed. Because the screening and evaluation portion of CI can take many months, it'll be important to get her access to language IMMEDIATELY. Either with sign or with amplification (although this can be REALLY hard with kids who have not heard at all and have other problems - hearing aids just don't work as efficiently as implants.)

Also, you need to get a language specialist on your team as fast as you can. An SLP who signs, or who is familiar with the special needs of kids who are hearing through amplification would be the best plan. If she's not had access to language for her first two years, there may be struggles to help her catch up. But you'll be giving her an incredible thing if you can help her language development.

But still...how exciting! And how wonderful! 

Love and good thoughts for you!