EI program is making me wonder...UPDATED

[greenluv]

if they really have it together or not.

So I rang up the ECI program and chatted with them about dd being deaf. I came away from that talk with no idea what "services" they were offering or how it might benefit our family. Really, no clue. I do know that the evaluation program is incredibly cumbersome which will end up involving 3 different agencies/schools. I'm talking about just the evaluation process.

I'm on the verge of calling them and saying "thanks, but I think I'll hold off for now." There has to be info out there somewhere for parents, right? Maybe I don't know what I'm looking for? I guess I've landed smack in the middle of Special Needs Land where no maps exist? I'm so discouraged at this point.

[by-the-lake]

Originally Posted by greenluv

if they really have it together or not.

So I rang up the ECI program and chatted with them about dd being deaf. I came away from that talk with no idea what "services" they were offering or how it might benefit our family. Really, no clue. I do know that the evaluation program is incredibly cumbersome which will end up involving 3 different agencies/schools. I'm talking about just the evaluation process.

I'm on the verge of calling them and saying "thanks, but I think I'll hold off for now." There has to be info out there somewhere for parents, right? Maybe I don't know what I'm looking for? I guess I've landed smack in the middle of Special Needs Land where no maps exist? I'm so discouraged at this point.

Hi,
I think EI services vary by state, so what I may tell you may not apply. However, there should be 1 coordinator you can talk to. Look through your info and see if who is assigned to you. Then address your concerns to them. I hope you can sort this out.
We are here for you!

[Aridel]

I think some states have EI set up so that there are "regular" EI services through a group that sees most kids, and then "specialty" services. So the person providing autism services for us wasn't from the EI group that provided playgroup, speech and OT, but from an autism service providing company. I think they have groups for kids with vision or hearing issues that are separate from EI - like a teacher of the deaf or similar?

I have heard some states have a different group assess than treat, but haven't experienced it. It is very overwhelming, but I would stick with it at least through the first meeting. Maybe write down all your questions, and keep at them until you have an answer for each.

Can you look online for a local support group for parents of deaf children? Maybe through a local School for the Deaf? They may be able to help guide you through all this.

[2boyzmama]

Talk to your audiologist! In our area there is a program called the Regional Infant Hearing Program. It is sort of associated with EI (only that you have to be in EI in order to get RIHP services). RIHP was a lifesaver to our family, helped us down the road of ASL, helped us with interpreting audiograms, helped us choose a school, etc.

In our town there is also a Deaf Community Resource Center, which provides assistance and fellowship for all member of the Deaf community and their friends/families. There they have a club called the Deaf Teen and Kids Club that meets once a month to do projects, go on field trips, etc. And it's completely FREE. We discovered an entire subset of our community that we didn't know existed before!

If you have the energy, I'd suggest you wade through the paperwork and jump through the hoops to get EI started. You can choose not to utilize their services (or do bare minimum) until later when she needs speech therapy or something like that, but at least you'll be in "the system" already. Getting "in" is often the hardest part.

And keep on posting here! There are several of us here dealing with hearing impairment to varying degrees, including at least two cochlear implant kids.

[elmh23]

Does your state have a Deaf school? The one in my state has small programs in various areas of the state for infants and toddlers.

[greenluv]

Ok, well I did speak to the deaf school and the woman was new so couldn't tell me the exact procedure for determining our point of entry into any program. I did manage to get this part figured out, eventually. I think.

I won't bore you all with the comedy of errors we've encountered so far. I did schedule an appt for the first of 3 evals one little baby is required to have. I suspect that this may be more hassle than help.

So...not exactly confidence building experiences so far.

[fairejour]

So, what is your plan? What level of hearing loss does your baby have? Do you plan on using sign or being oral? Where do you live? Early Intervention is SOOOOOOO important for our deaf kids. All the research shows that deaf kids can catch up, but they MUST start EI before 12 months. You need to get language in (whatever language you choose) and one of the best ways of doing that is through EI and a parent infant program advisor.

[nigellas]

If it makes you feel any better, getting our initial evals scheduled for early on were a huge hassle for us too - Calls not returned for weeks, being passed from one person to the next - But once we were "in", it became much more streamlined and useful.

[nicky85]

EI does vary by state. We've been lucky. Our experience has had very little hassle. My son was born with spina bifida and the hospital social work and spina bifida specialists gave us info about where to go and what to do. So sorry to hear that you're getting the run around! Just wanted to wish you good luck. =)

[greenluv]

Originally Posted by fairejour

So, what is your plan? What level of hearing loss does your baby have? Do you plan on using sign or being oral? Where do you live? Early Intervention is SOOOOOOO important for our deaf kids. All the research shows that deaf kids can catch up, but they MUST start EI before 12 months. You need to get language in (whatever language you choose) and one of the best ways of doing that is through EI and a parent infant program advisor.

I don't doubt the importance of EI at all. What I do doubt is the level of experience the people in this EI program have when it comes to dealing well with a deaf child. Our dd is profoundly deaf, at least that's what they told us at her first ABR test, which will be repeated after Christmas. In general, we've been having 2 or 3 Dr. appts. a week and I'm so exhausted.

I have many phone #'s left I need to call to find out if we'll be "allowed" to determine if our dd is a cochlear implant candidate NOW. Everyone seems to want me to wait or delay this process and see about having it done when dd has reached 12-18 months of age. Hell No! I'm not about to wait that long!
One place was even trying to say that neurologically it makes no difference if a baby gets an implant at an earlier age. Neurologically, maybe but what about developmentally?? Why would I want my daughter to be that far behind in her development??

I will be speaking with an ENT from the Mayo Clinic who does cochlear implants starting at 6 months. Right now, this is my main goal. I also have to get back with our geneticist. Dd's genetic testing showed that the 2 most common genes that cause deafness aren't present in dd. This is just a little bit of confirmation that dd has a syndrome of some kind. We just need to confirm which syndrome we're dealing with and it's severity.

I am so freaking frustrated because I know there is a certain amount of urgency here and yet there are so many roadblocks. I almost feel sorry for the next guy to tell me "no" about something because I could just go off my nut and tear him a new one. Why don't we have a Mama Bear smiley??

[fairejour]

Have you joined http://groups.yahoo.com/group/cicircle/ yet? It is a group of parents of implanted kids. I can not more highly recommend it! Go on and ask for people in your area to give you names of the best people.

Oh, and research shows that neurologically, kids implanted before 18 months have the brains of hearing kids, not deaf ones....so, you were right about that too!

I know that there are parents on CI Circle whose kids were implanted between 6 and 10 months old. They will have great advice on professionals as well as how to deal with insurance.

[greenluv]

Originally Posted by fairejour

Have you joined http://groups.yahoo.com/group/cicircle/ yet? It is a group of parents of implanted kids. I can not more highly recommend it! Go on and ask for people in your area to give you names of the best people.

Oh, and research shows that neurologically, kids implanted before 18 months have the brains of hearing kids, not deaf ones....so, you were right about that too!

I know that there are parents on CI Circle whose kids were implanted between 6 and 10 months old. They will have great advice on professionals as well as how to deal with insurance.

Thanks for this link! I will be checking it out.

[2boyzmama]

Just keep plugging away, for us the biggest hurdle was getting "in" to EI, then things were relatively smooth (albeit complicated at times, we had our service coordinator, the various therapists [my son had ST, OT, and PT], the Regional Infant Hearing Program outreach specialist, a Family Home Services Program service coordinator, and a Bureau for Children with Medical Handicaps nurse case manager. So many people, I often didn't know who to call with what question!)

You said that they suspect an underlying syndrome, does she have any other symptoms? Has she had a CT or MRI to check her cochlea? My son has a chromosomal deletion syndrome that is associated with cochlear hypoplasia. It's not formally listed as a symptom yet, but just in my city there are two kids with the syndrome and with cochlear hypoplasia, there is a research study going on right now to explore it in more depth and formally list it as a recognized symptom of his syndrome (he has 22q11.2 Deletion Syndrome). My son's cochlea are normal, his hearing loss is conductive.

[greenluv]

Originally Posted by 2boyzmama

You said that they suspect an underlying syndrome, does she have any other symptoms? Has she had a CT or MRI to check her cochlea? My son has a chromosomal deletion syndrome that is associated with cochlear hypoplasia. It's not formally listed as a symptom yet, but just in my city there are two kids with the syndrome and with cochlear hypoplasia, there is a research study going on right now to explore it in more depth and formally list it as a recognized symptom of his syndrome (he has 22q11.2 Deletion Syndrome). My son's cochlea are normal, his hearing loss is conductive.

Bella has some facial paralysis which is subtle. This causes one eye not to blink properly and if she gets upset it stays wide open and sort of stares straight ahead, but its only really obvious at certain times. In fact, our geneticist commented that every symptom Bella has is subtle if you don't include the profound deafness. Dr. Geneticist suspects Bella has Townes Brach (or Broch) Syndrome. One other symptom she had has now been removed and that was her "ear tags" or accessory tragus on each ear. The tags were very large and interfering with our ability to get a device to help the aids fit in her ears because of the slightly odd shape. As for learning disabilities, we don't know yet and I'd imagine that symptom would take some time to make itself clear-assuming it's even present.

I think this week I will be pushing our ped. to order an MRI to check dd's lower intestinal tract as I think something is going on there. I'm thinking I can have him do one scan for both her ears and her tummy and have that in place for a trip to the Mayo, maybe. I had him do the kidney ultrasound a couple of weeks ago and haven't heard that anything was weird with that even though I thought one kidney looked lumpy. I've been assured that baby kidneys are sometimes like that and not to be too worried yet. There is so much involved that I'm sure I'm not thinking of it all.

[missnoodlesmom]

I just wanted to tell you that I work in EI with children who are visually impaired and I've worked with quite a few kids who have Cochlear Implants. This year I have 2 kids who were implanted before their 6th month in both ears and they are doing so well with speech that they don't qualify for speech therapy at the age of 4! I just think that's so amazing.

I also had a student last year who got the double implant at the age of 5 and she has made incredibly progress - I couldn't be more proud of her!

Keep the hope, Mama. There are some great things being done in EI - I know getting "in" sucks - the process is completely crazy and does deter parents from getting services that their kids may need - but once you are in, I'm really hopeful for you that it will be a great thing for your child.

[greenluv]

Originally Posted by missnoodlesmom

I just wanted to tell you that I work in EI with children who are visually impaired and I've worked with quite a few kids who have Cochlear Implants. This year I have 2 kids who were implanted before their 6th month in both ears and they are doing so well with speech that they don't qualify for speech therapy at the age of 4! I just think that's so amazing.

I also had a student last year who got the double implant at the age of 5 and she has made incredibly progress - I couldn't be more proud of her!

Keep the hope, Mama. There are some great things being done in EI - I know getting "in" sucks - the process is completely crazy and does deter parents from getting services that their kids may need - but once you are in, I'm really hopeful for you that it will be a great thing for your child.

MissNoodlesmom, thank you for this post. This came just exactly when I needed the reassurance!


OK, so here's the update:

DD had her evaluation and we decided that she does have a couple of physical issues we should keep an eye on, most of which we're pretty sure relate directly to her deafness. The speech therapist also came along so in the beginning of our meeting we had 4 people involved. All of them seemed to know exactly what I was concerned about and put me at ease, which made me feel 100% better.

One of the therapists even phoned a mom of a little boy with CI's and had her ring me on the phone so I could chat in person with another mom of a deaf child. This mom was so amazing and she was an absolute wealth of information about who I could call to find out various things. All in all, I am in a much better place than I had been initially. She even told me about a state program to fund pediatric CI's! How cool is that??

I guess now we're waiting to have our big pow-wow where they'll invite the school for the deaf to get involved with their outreach program. So, one major thing down and only 50 billion to go!

[~cassie]

What a great update! Just keep plugging along and things will fall into place. Our first year was rather busy and filled with lots of appointments and phonecalls but now it has all simmered down and we have all of our resources together, lot less difficult now!