Help with Deaf Son *Update Page Two*

[nliedel]

I have a son who was born hearing impaired. He is two and a half now and while he was tested as an infant we were told not to do too much about it until it was obvious it was a probelm (He has no hearing in the left ear and partial hearing in the right). Well it's a problem. He is being tested this week again and a plan will be put in place. He is a preemie and we did not notice how bad his hearing was until his little brother (1 and a half) started to out talk him two weeks ago!

I know Herne can hear some because he talks a little. Some words are crystal, "up" for example and then he babbles on and I know he is talking in full sentances but I have no clue on earth what he is saying.

I thought about putting this on the disAbilities board but I wanted a board that was more widely read. We are learning some sign language but the rest of the family (except my husband) would rather just yell at the kid. I am tired of the yelling and he can't seem to hear it anyway! We all watch Signing Times (on PBS) every week and it helps and Herne can hear music if it is loud or high but signing just seems like a solution.

The problem? I have four kids. Getting to a signing class is laughable at best. So I need to learn online (once we have a definative diagnosis I will look into resources) and then the big one. HOW DO YOU GET A TWO YEAR OLD TO STOP LONG ENOUGH TO LOOK AT YOU TO LEARN?? He can sign "eat" but I probably know 50 words now and he probably has 3 signed words. He is busy, busy, busy all the time. Very smart and funny and interested in the world. Stopping whatever mayhem he is creating to sign is just not in the cards for him right now but I cannot go on not being able to talk to him because I bet he has a million questions.

So any help would be appreciated. I will post a follow up this week (his test is Thursday) and keep you all in the loop. Sometimes it's overwhelming here. We have four boys, two adopted. One of the adopted boys was born with a host of issues and he can be hard to reach. The other one is 8 going on 30! (He is calling girls. Kill me now) the babies were preemies and pretty small. Most of the time I can handle it but I am pretty sure I did not move as fast as I should have on the deafness because of denial. I know my husband is saying he was not pushing it because it felt like too much on top of the other stuff but we can deny no more. Oh and then there is that whole, "my kid is deaf, is it our fault?" thing going on. No, I could not have known, it is congenital and I am adopted so I have no family history to work with. OK whining off. Any ideas appreciated.

 

[Toby'sFriend]

you need to contact your State Early Intervention program.

I'm very concerned that this hearing loss was detected at birth and nobody has helped you with this. Your Pediatrician SHOULD have helped you get your son services from birth. Telling you to wait is 100% bad, terrible advice. This is not a problem you can tackle alone.

This programs are available to every child in the State - they are not need based or income dependent, every child with a disability should be receiving them.

I did a quick Google Search and this is the program for the State of Michigan.

http://earlychildhoodmichigan.org/What.htm

Call Monday. I can't stress that enough. Call Monday. The longer you wait, the more difficult it will be for your son to catch up when he reaches school age.

Until your son is 3 years old, he will most likely be served in a home based environment. I am not familiar with your particular state, but most states seem to run on that type of program. Then they will transfer his care to the local school, who will most likely offer him a Preschool program designed around his disability, as well as speech therapy and other support.

Again -- Early Intervention is a 100% priority. Call Monday. If you can't find a number on that website, call your local Elementary School and they can give you a phone number.

Call Monday.


btw, I have a hearing impaired son. Today he is an honor roll 6th grader. But he never would have made it without help.

 

[nliedel]

Thanks but since Hernie-Roo is a preemie he is already in the program (physical therapy. He took almost two years to walk. He has since made up for the lost time). They will not enroll him in hearing assistance programs until he has a new diagnosis and treatment plan and we will have that on Thursday.

We had Steven (adotped with issues) in the program in Illinois and it was horrific getting him re-enrolled in MI! So now I call them at the first sign of trouble (because the little ones were preemies, Herne VERY early, and they often need help. Not to take advantage). We have found once they are enrolled for one service getting them additional services is not hard.

I will give them a heads up that he is going to be evaluated this week tho because of your post.

 

[MAKmom]

You poor thing. Toby's friend is very wise. Your going to be just fine. Your son is happy. Your going to make the right phone calls & its all going to work out just fine. Do not feel guilty its a waste of time.

 

[ceiligh1]

My son loves Signing time as well. Just an FYI they do have the show available on DVD that way you could watch it on a daily basis since all the kids seem to like it. Also why not have the older brother start learning that way he can help teach the younger brother. It sounds to me like you are doing everything you can right now.http://www.signingtime.com/

 

[Pooh's Pixie]

You definitely need early intervention services. Call your pediatrician and find out exactly what you need to get THIS child enrolled in EI services for speech and I would guess for some sign language. Are there any schools for the deaf near you? Here in Boston there are and I would guess you could call them and at least find the resources.

I don't have any experience with deafness but keep the faith: my DH is a dentist and he went to dental school in Boston with a man who was deaf. That's right, this guy made it through college and 4 years of dental school and got very little different treatment. He was really an inspiration to everyone he went to school with. So do as much as you can to make sure your child has what he needs for success. Good luck!

 

[Toby'sFriend]

Well I'm even more shocked to hear that he is enrolled in EI and that haven't ordered a speech evaluation. It really sounds like your support group needs some motivation.

yes, still call Monday. They will most likely want to order their own Speech Evaluation, regardless of the results of his hearing exam. I have to tell you, if they try to put you off again, my advice would be to INSIST that they schedule an Evaluation by a Speech Therapist. Still speaking in one word bursts at age 2 1/2 is a profound speech delay, and he will almost certainly qualify for services regardless of the results of his exam Thursday.

Has he had a Developmental Evaluation test? He could very well also qualify for Occupational and Developmental therapy since those delays often accompany Speech Delay. I would recommend that you ask for those evaluations also.

Obvioulsy, yelling is not a solution, that has to be very frustrating for you and other family members. I think you know that. If increased volume is beneficial in helping his comprehension, then he is very likely a good canidate for an assisted listening device and/or a hearing aid. That is an option you need
to discuss after you get the results with the Audiologist. Who ordered this exam? Is he seeing an ENT physician or just his Primary Pediatrician?

As for sign language, it can be very beneficial to a speech delayed toddler because they WANT to communicate just as much as you want them to. I know you said that transportation is difficult, but if you have a Gymboree nearby, most of those places offer a baby signs class. All of your children could participate and would enjoy that. However, whenever possible sign language needs to be an aid for oral communication, not a substitute.

 

[mom2boys]

It can be very overwhelming when a child is diagnoised with any type of issues. However, you will chart a course. The thing you have to remember is that you are your child's strongest advocate. Your son will be fine.
BTW We are going to an Eagle Scout ceremony this month for a hearing impaired young man. The only accommodation this child appears to recieve from Scouts is signing. (His mother is a strong advocate & will push when needed.) He is remarkable. He is in the school play this weekend. He is a very confidient, out-going young man. I would consider him remarkable if he were hearing.
Remeber your DIS friends are hear for you when you need encouragement, advice or just to vent.

 

[tw1nsmom]

I too am stunned that they haven't tested him for speech/language delays. Put a formal request in writing that your son have a full evaluation. A parent can make a referral. Keep copies of everything. They must evaluate your son once the request is received. Please PM me if you have any questions. What they are doing is illlegal per federal law (IDEA). So much of language development must occur at a young age. Without early intervention your child is at risk for developing more language based disabilities. If they aren't able to express themselves or understand others (via speech or sign language), there is a possibility that cognitive or social deficits could be developed due to lack of language stimulation.

Here's the website for Parent to Parent of Michigan http://www.p2pswmi.org/ . Please call them. They can help you find the resources/information you need to get the services for your son.

Working with him at home is fantastic and necessary, but from what you say your son needs more intensive intervention. Once your son is three, when you have a CPSE meeting you should request parent training in sign language. It's protected under IDEA, but they won't offer it to you.

Keep pushing and advocating. Feel free to PM me with any questions. I work on a volunteer basis as a special education lay advocate in New York. While there are subtle differences in state law, they are all covered under the same federal law.

 

[kc10family]

My DD’s Love Signing Time. I bought some of them online and I check out others at our local library.

You will be so surprised at how FAST he will learn and the other kids as well if you all play and sign together. Don’t yell… it does no one any good and the other kids will just start to get bothered by it. Signing is so wonderful.

Go to the library and get books, tapes, DVD’s. Make games out of signing. You will see how FAST the kids pick it up.

If your family want to talk with your DS then they will pick it up also. Good luck with the classes.

Best of luck!

Please let us know how it goes.

 

[Talking Hands]

Please contact your local Deaf Services Bureau or Deaf Club as well as your state's Early Education programs. Sign language is a good thing. Also don't look at your son as Hearing Impaired. Impaired is a terible label to put on a child. He's deaf but can do anything any other child can do and should be expected to. As to family yelling at him which you admit he cannot hear, remind them that yelling disorts there speech and makes it very hard for the child to get anything out of it. Making sure he is looking at you and speaking clearly in a normal voice is much better. He may gradually pick up some speech reading. Even then on a max of 35% of English can be speech read and the rest muct be picked by context and experience.
If you want to talk feel free to PM me.
I am a hard of hearing substitute teacher and church interpreter for the deaf working to get her state QA. Right now I am subbing for a deaf kindergarden class.

 

[nliedel]

OK I should have been more proactive about this and I am sorry that I have not but in my defense (and I do not feel on ANY level I am being attacked at all) he was born VERY early. There were so many issues that the hearing sort of dropped through the cracks. He came at 28 weeks and it was really dicey for the 12 weeks he was in the NICU. He finally had a blood transfusion that turned it all around (whoever you are blood donor thank you). He came home on a monitor and O2 and was sent back for A's and B's (they forget to breath sometimes) twice. Love that monitor, not.

He was on caffeine to help keep him stimulated (do you know what caffiene costs in a tube? I could not believe it! Over $1200 a month. Yes for the same stuff in coffee! Thank you insurance company). There is more but I blocked it out lol!

So while I should have worked harder... then I got pregant again (not bad for a 40 year old infertile chick) and was in the hospital for 8 weeks myself and then JJ was early and they said not to see how he developed and it was easier to just let it go, well that is not exactly true, it has always been there but he had hearing in one ear and said that it might be OK and not to worry in light of the other probelms. Then Steven got into school and his issues with Fetal Alcohol Syndrome really jumped to the fore. Now that we see how bad his hearing is we are on it.

I will get those DVD's. We are teaching (forcing) the older boys to learn sign as well. As far as I am concerned this is a family thing. Just like the preemies the whole family takes part in the care and concern of the rest of them. I am not going to be some hand wagging interface between our Hernie-Roo and the rest of them. We are all in this together.

Maybe I just thought/hoped it would go away or get better. Again the hearing in one ear was not too bad, but it's apparent now that it's not as good as it was. I know that's so lame but honestly, another round of arguing early on officials and trying to get more services just exhauts me. I know tough, I don't have a choice and he deserves the best. Then there is trying to get Grandma to believe that a child with issues is still as wonderful and special as all the rest.

Talking Hands: Don't you worry about anyone around here being labeled anything besides "smelly" (today they were passing wind and making jokes about it. All but the baby. Honestly). I don't like labels and my husband hates them.

For some reason my alert e-mails are not coming through so I am tracking down this thread and posting as I get here.

 

[tw1nsmom]

OK I should have been more proactive about this and I am sorry that I have not but in my defense (and I do not feel on ANY level I am being attacked at all) he was born VERY early. There were so many issues that the hearing sort of dropped through the cracks. He came at 28 weeks and it was really dicey for the 12 weeks he was in the NICU. He came home on a monitor and O2 and was sent back for A's and B's (slow breathing and then just forgetting it altogether) twice. Love that monitor, not.

He was on caffeine to help keep him stimulated (do you know what caffiene costs in a tube? I could not believe it! Over $1200 a month. Yes for the same stuff in coffee!).

So while I should have worked harder... then I got pregant again (not bad for a 40 year old infertile chick) and was in the hospital for 8 weeks myself and then JJ was early and they said not to see how he developed and it was easier to just let it go. No more tho. Then Steven got into school and his issues with Fetal Alcohol Syndrome really jumped to the fore. Now that we see how bad it is we are on it.

I will get those DVD's and the older boys are forced to learn sign as well. As far as I am concerned this is a family thing. Just like the preemies the whole family takes part in the care and concern of the rest of them. I am not going to be some hand wagging interface between our Hernie-Roo and the rest of them. We are all in this together.

Maybe I just thought it would go away. I know that's so lame but honestly, another round of arguing with school officials and trying to get more services and arguing about that. Trying to get Grandma to believe that a child with issues is still as wonderful and special as all the rest. All of it.

Talking Hands: Don't you worry about anyone around here being labeled anything besides "smelly" (today they were passing wind and making jokes about it. All but the baby. Honestly). I don't like labels and my husband hates them.

For some reason my alert e-mails are not coming through so I am tracking down this thread and posting as I get here.

Oh my goodness! I know exactly how you feel, and I only have one child with special needs and his twin sister. It's very normal for parents to have that "maybe it will just go away" feeling. This whole process is so overwhelming! What's important, is that you're seeking help now. The people who should be ashamed of themselves are the physicians and administrators who didn't help you persue the appropriate services for your son.


OT- I just wanted to point out that I finally made it to 1,000 posts

 

[clh2]

I don't have any experience with anything you've got going on Just wanted to send some .

Good luck with the eval this week, hope you get the right diagnosis to get the services you need for your son.

 

[SunshineOR]

Don't know much, I just wanted to add a personal experience. My brother-in-law recently lost his hearing and is learning to sign. I've been trying to figure out how to get our family to learn it. I took ONE class to learn the basics, bought a big signing dictionary, and we've been just learning ourselves. We use our sign language with my bil and he says we're making very few mistakes. It's amazing actually how easy signing is to learn. Rather than really break it down and do lists of words at a time, we just try to converse in it and look words up as we go. My kids were 4 & 6 when we started, by the way. I wouldn't worry--your family will probably have fun learning sign language together and it will be so great for communication with your little one. And absolutely go get Early Intervention services--you'll find it so helpful!

 

[Talking Hands]

SunshineOR while you are learning signs and conversing with them you are not learning American Sign Language (ASL) ASL has its one grammar and linguistics and is a true language and just as English you need to learn the rules that govern it. Also ASL is a very conceptual language so there is not a 1 word - 1 sign correlation. I can think of about 20 signs to use for the English word RUN depedning on how it is used.

 

[Talking Hands]

Nliedel I'm glad that you aren't labeling your child. When you talk with the educators use the words deaf or hard of hearing. He is not a deaf child but a CHILD who happens to be deaf. I know it seems picky but it will emphasize to the powers that be that you want the best for your child and you expect that your child will be educated to the same extend as a child who is not deaf. Communicate with him as much as possible, read to him, sign to him, label things with the word and sign (start for reading), start teaching him the ABC's in sign and print so he knows the correlation. Do as much as you can with him.
A good series though expensive is the Bravo series. You can borrow these for free from the Captioned Media Program (CFV.org) They are sent to you and then you send them back free of cost (Including postage) It is a great resource for you and your family.
I must tell you that I know of an excellent sign language interpreter whose brother is deaf. His parents decided that the entire family would learn to sign and when he grew up he was able to take that ability to sign and turn it into his career. Your hearing kids will become interpreters for their brother as they gain skills in sign language and who knows maybe one will become and interpreter.

 

[kc10family]

Best of luck and keep up the good work on helping your children be everything they can be.

OK I should have been more proactive about this and I am sorry that I have not but in my defense (and I do not feel on ANY level I am being attacked at all) he was born VERY early. There were so many issues that the hearing sort of dropped through the cracks. He came at 28 weeks and it was really dicey for the 12 weeks he was in the NICU. He finally had a blood transfusion that turned it all around (whoever you are blood donor thank you). He came home on a monitor and O2 and was sent back for A's and B's (they forget to breath sometimes) twice. Love that monitor, not.

He was on caffeine to help keep him stimulated (do you know what caffiene costs in a tube? I could not believe it! Over $1200 a month. Yes for the same stuff in coffee! Thank you insurance company). There is more but I blocked it out lol!

So while I should have worked harder... then I got pregant again (not bad for a 40 year old infertile chick) and was in the hospital for 8 weeks myself and then JJ was early and they said not to see how he developed and it was easier to just let it go, well that is not exactly true, it has always been there but he had hearing in one ear and said that it might be OK and not to worry in light of the other probelms. Then Steven got into school and his issues with Fetal Alcohol Syndrome really jumped to the fore. Now that we see how bad his hearing is we are on it.

I will get those DVD's. We are teaching (forcing) the older boys to learn sign as well. As far as I am concerned this is a family thing. Just like the preemies the whole family takes part in the care and concern of the rest of them. I am not going to be some hand wagging interface between our Hernie-Roo and the rest of them. We are all in this together.

Maybe I just thought/hoped it would go away or get better. Again the hearing in one ear was not too bad, but it's apparent now that it's not as good as it was. I know that's so lame but honestly, another round of arguing early on officials and trying to get more services just exhauts me. I know tough, I don't have a choice and he deserves the best. Then there is trying to get Grandma to believe that a child with issues is still as wonderful and special as all the rest.

Talking Hands: Don't you worry about anyone around here being labeled anything besides "smelly" (today they were passing wind and making jokes about it. All but the baby. Honestly). I don't like labels and my husband hates them.

For some reason my alert e-mails are not coming through so I am tracking down this thread and posting as I get here.

 

[Toby'sFriend]

Also don't look at your son as Hearing Impaired. Impaired is a terible label to put on a child.

No I'm sorry. My son is Hearing Impaired. I have over a decades worth of Audiology exams and failed surgeries to prove it. Hearing and Impaired are just words.

They are no more a "Label" of who he is than any other physical characteristic about him. We sometimes use those words to explain to those around him why he appears to be ignoring them, or why sometimes his speech doesn't sound like others. It has never been a terrible burden for him. In fact, it is kind of a relief for him to know WHY he sometimes isn't exactly like everybody else.

We have never used his condition as excuse. My son has been expected to participate to the best of his abilities in everything, just like my other children. He sometimes needs some extra help, such as with learning how to talk and read. They only time we have ever fought to excuse him from anything was in the Early Primary years when all the other kids were working on Phonics -- that was just impossible for him.

But as I said, today as an almost 13 year old, he is a consistent Honor Roll student in a regular classroom. He plays on the Sports Teams, has lots of friends, goes to parties and dances with all the other kids and is just as obnoxious as any other 13 year old.

In fact, his compensation skills are so developed that most of the time his teachers and the kids around him don't even remember that their is something different about him -- when he gets stressed his speech gets kind of funky, but otherwise.... he is just a kid like everybody else.

So I guess that "Terrible Label" we have put on him hasn't done too much damage.

OP: Honestly, it will be ok. As I said, knowing why something is happening is a relief. When you know the why - then you can work on how to make it better. Your son is only 2 1/2 years old. So, you have a good 2 to 3 years of time to work with before your son starts school. You haven't waited forever. You have come to realize there is a problem and now you are going to work to get him the help he needs. There is no sense in blaming yourself for this. It will be ok.

Good Luck.

 

[nliedel]

OK I put the call into Early On but it's the first day back after winter break so I had to leave a message. Yes, I will keep on it!