Overwhelmed! long — The Bump
Special Needs

Overwhelmed! long

Hi,

I am not a regular on this board, I lurk here and there but I just need to get this out there for advice or whatever.

My son was born with mild/mod hearing loss, at Christmas he was diagnosed with profound hearing loss.  We have been trying to get a cochlear for him but everything seems to take forever!  Today we just had his neuropysch  evaluation and she thinks he has a sensory problem.  So I guess Sensory Processing Disorder. 

I am just overwhelmed, I feel like we are always getting talked to about something that might be wrong.  Its so hard!  I know he is smart and I think SPD isn't that bad if treated.  But I need some encouragement or reality check.  How is this going to affect him in the long run at school?  We haven't been officially diagnosed we are going to get a OT eval soon.

Thanks!

Re: Overwhelmed! long

  • Hearing loss or Deafness is difficult to deal with as hearing parents! I don't say that to be cruel but just truthful. How do I know, How does he know, where do I go, what do I do now???? First breathe you are on the right track if a cochlear is what you want for your baby then research the S#$T out of it. I know people who have have many troubles with them, but also people who have nothing but praise for them. Also so many things are sensory related and it too is important, but make a list for yourself and baby. Bring it to your doc and say what can I do this month or what is priority! I know the earlier the cochlear is done the better the success for the child and speech development. When it comes to school is he going to be mainstreamed or will he go to a school for the Deaf? I have allot of Deaf friends and have volunteered at a school for the Deaf. It is an incredible atmosphere and the education they receive is amazing, your child will also form "lifelong" friendships instantly. I know the same happens while mainstreaming but does take more time to develop the friendships. I can't answer for you, but do what feels right and I wish you a world of luck and happiness for your baby!
  • Hi,

     Our DD has bilateral cochlear implants, after losing her hearing to meningitis last summer.  We got fast tracked due to the cause of deafness, but I do know the angst of waiting and the frustration of working on getting insurance coverage, etc.

     My best advise, regarding the CI wait, is to ask for help from the parents on cicircle, a yahoo group full of experienced moms and dads who know exactly what you are going through.

    I don't have any experience with the sensory issues part of your question, but CIs were right for us, are an amazing blessing for DD, and she LOVES them, even at just 2 years old.

    Feel free to ask me more questions if I can be of help.,  I don't know how the PM thing works on here, but I have a secondary email address I don't mind posting here: lrigall at hotmail dot com.  So, shoot me an email if you need more info on cicircle, but you can google the group pretty easily.  It's a listserve open to anyone who can benefit from it. 

     

    HTH!

    Image and video hosting by TinyPic Lilypie Kids Birthday tickers Lilypie First Birthday tickers
  • Loading the player...
  • Hi there!

    I'm new to this board as well, but I saw your post and wanted to let you know that no matter what...it does get better!  I know...hard to believe right now, but it will!  I grieved the loss of my son's hearing for many, many months, but somehow...at some point...it was ok with me.  And now, truthfully, on a daily basis, I don't even realize he's deaf.  (I mean, yes, I KNOW, but he is as 'normal' as can be...I talk to him, he talks to me, we talk in the car when he can't see my face...it's amazing!)  My son, who is now 2 years, 4 months, is profoundly deaf due to sensorineural hearing loss (Connexin 26).  He was diagnosed at 1 month and received bi-lateral, simultaneous, cochlear implants at 11 months.  Now, over a year later, he is learning to listen and speak and is doing great!  His receptive hearing is on par with his hearing peers, and his spoken/expressive language is about 6 months behind...but he's making progress everyday and we expect him to be caught up by age 3.  So...there's hope!!!!  He goes to a mainstream pre-school 4 days a week and he'll be mainstreamed from Pre-K on.  Cochlear implants may not be for everyone, and I totally get that.  However for us, we have no other deaf people in our families...anywhere...and we wanted our son to listen and speak.  We live in an oral world, and we wanted him to be a part of that.

     One thing you can do now is look into your Early Intervention program through your county.  They have therapists who can work with your child, answer questions, etc.  I also recommend Cicircle on yahoo...a great resource of families who can help guide you/answer questions, etc.  However, it can be a bit of information overload, so read with caution!  :)

    You are your child's best advocate!  You must speak up and ask questions and seek answers.  You are also your child's best teacher...so educate yourself the best you can!  AG Bell (a g bell dot org) is another wonderful resource.  Check them out.  They have a wonderful conference every 2 years that we attend to seek out professionals, gather information, etc.  It's in June this year in Orlando.

    I know I'm bouncing all around here...there's so much I could share with you but I don't want to bombard you with all of it.  Plus, each stage you go through (initial testing, then hearing aids, then CI evals to see if an implant is an option, then oral therapy, etc.) has so many 'parts' to it.  If you'd like me to share anything with you, PLEASE don't hesitate to ask!  You can send me a PM or send an e-mail to me at [email protected]  I know for me, it really helped talking to other parents!  Good luck and hang in there!!!!

This discussion has been closed.
Choose Another Board
Search Boards