overwhelmed but looking for EI experience tales

[confustication]

We've been asked to involve DS 1 in EI services which, around here anyway, are pretty universally home-based.

We'll be doing some speech therapy, and beginning some sign (we're still waiting for all sorts of test results to come in, and other tests to be done- I'm feeling thoroughly upended in the past week ) as well as continuing to assess what his needs are going forward.

As we already knew, he has some substantial deficits in terms of speech (non verbal at 20 months). We know now that it's probably related to his hearing, but I'm still very much in the dark. I feel like all the sudden tests are 'hurry up and wait'!


So, tell me what EI is like in your area, and when you age out of EI services, and live in an area with nothing else, where do you go next? Do you relocate so your kids can be in a school that will meet their needs? My eight year old is homeschooled because the local district would not work to meet her needs and an IEP was 'a stupid piece of paper.' It's very rural, and there are no other options.

I'm having a *much* harder time dealing with this than I did with my daughter's AS diagnosis, and I don't know why. Maybe because she was diagnosed later and it's just who she is?

Mostly, I just needed to babble because if I don't, I may implode. Exploding would take more energy than I have left.

Oh, also, can I mention the horrible guilt that goes along with wondering why two out of three kids have something other than 'normal' going on? I feel lucky that they are healthy and I suppose in the grand scheme of things that's the most important thing, but I also want to stomp my feet and have a temper tantrum because it's not fair that my kids can't just be "normal" happy kids. Healthy attitude for a mom to have, right?

[2boyzmama]

Originally Posted by confustication

Oh, also, can I mention the horrible guilt that goes along with wondering why two out of three kids have something other than 'normal' going on? I feel lucky that they are healthy and I suppose in the grand scheme of things that's the most important thing, but I also want to stomp my feet and have a temper tantrum because it's not fair that my kids can't just be "normal" happy kids. Healthy attitude for a mom to have, right?

I am putting kids to bed, I'll write more later, but I wanted to sympathize with you on this point.

It's maybe not a healthy attitude for a mom if you continually "tantrum" in public, but that's what I use this forum for sometimes! Whine, vent, cry, type in all caps and BOLD if it helps!!

[2boyzmama]

Okay, I'm back, but don't know for how long. Gavin usually takes a cat nap around now, then is awake for another hour, THEN is down for the night (well, down for 2 hours maybe!) I'm going to answer in red...

Originally Posted by confustication

We've been asked to involve DS 1 in EI services which, around here anyway, are pretty universally home-based.

We'll be doing some speech therapy, and beginning some sign (we're still waiting for all sorts of test results to come in, and other tests to be done- I'm feeling thoroughly upended in the past week ) as well as continuing to assess what his needs are going forward.
I completely understand the "feeling upended", it's like the rest of the world needs to just stop until you can get a handle on things. Unfortunately, that never happens!!
As we already knew, he has some substantial deficits in terms of speech (non verbal at 20 months). We know now that it's probably related to his hearing, but I'm still very much in the dark. I feel like all the sudden tests are 'hurry up and wait'!
Have they scheduled anything yet? I forget where you are in the testing process...

So, tell me what EI is like in your area, and when you age out of EI services, and live in an area with nothing else, where do you go next? Do you relocate so your kids can be in a school that will meet their needs? My eight year old is homeschooled because the local district would not work to meet her needs and an IEP was 'a stupid piece of paper.' It's very rural, and there are no other options.
In our area EI is home based and/or group (center) based. We started home based because of Connor's immune deficiency. As he got healthier, we switched to group based. Group based is offered more frequently than home based, which was the primary reason we switched.

We are in a large area (Dayton Ohio) but yet we're still facing the potential of having to move to get what Connor needs. Our local school is trying to create a decent educational environment for him, but I just don't know if it's going to be good enough. Unfortunately moving isn't easy. We just moved here three years ago.

One thing I can say is there's always a chance that your local school has improved their special ed program since your daughter was there.
I'm having a *much* harder time dealing with this than I did with my daughter's AS diagnosis, and I don't know why. Maybe because she was diagnosed later and it's just who she is?

Mostly, I just needed to babble because if I don't, I may implode. Exploding would take more energy than I have left.
I totally understand!!! I decided early in our journey with Connor that I needed a vice of some sort, and usually that's skittles or ice cream. Then I had to add a new vice--running!--to make up for the skittles and ice cream vice! Some moms prefer chocolate, some splurge on a massage once in a while, some drink a glass of wine. I highly recommend finding a vice for yourself! Preferably one that's not-too-horribly-unhealthy
Oh, also, can I mention the horrible guilt that goes along with wondering why two out of three kids have something other than 'normal' going on? I feel lucky that they are healthy and I suppose in the grand scheme of things that's the most important thing, but I also want to stomp my feet and have a temper tantrum because it's not fair that my kids can't just be "normal" happy kids. Healthy attitude for a mom to have, right?

You know what's funny...Connor is very obviously special needs, and his needs were so sudden and so severe initially, that i had no choice but to just deal with it as it came. And I did. Ian, though, has his own needs, and I was pretty much in denial about them. He had extreme behaviors, and I dealt with the behaviors, but I wasn't ready to admit that they were abnormal, or put any effort into determining the cause. I finally did (removing gluten) and he's doing much better.

Then comes Gavin...he was born with a funky palate, and we had feeding issues. I just couldn't deal with it!! It was comparatively very minor, but it was just one more thing, and I really had trouble. It took me a while to come around and be ready to focus on determining whether it was an issue.

And my husband, too. He's been okay with everything so far (although not nearly as involved as me, I manage all the medical stuff because I'm a bit of a control freak ) But just yesterday he had to take Gavin to the eye dr because his eyes are crossing a lot. To me it was a simple thing, just check to make sure it wasn't a lazy eye. But my husband had a major problem with it! He suddenly got all angry, saying "why aren't any of our kids just normal?" (turns out his eyes are probably fine, just immature).

So yeah...we all have those moments (or days...or weeks!)

[~cassie~]

Our early intervention is all home based. We are in a developing area, but still rural with regard to any services. Aidan is aging out of EI in 4 1/2 mths and we are having his transition meeting in a few weeks. He will go to the preschool for special needs 3 yr olds--self contained classroom only, and then at 4 will be able to be mainstreamed. But we do have that program here luckily. If it wasn't here, then we would homeschool, which is essentially what we have been doing the past 18 mths with him anyway. But the only services he needs is an incredibly language rich environment with a lot of one on one attention and then some strengthening exercises for his low tone. So he is "low maintenance" for the most part.


Do you have any university programs around? We have one that had a speech and hearing center and the Master students do speech therapy with him and are awesome! And then they have an Early Childhood Center that we may do if the school he is supposed to go to doesn't work out, and it's only 150$ a mth! So definitely see what options are there in other settings you may not have thought of. You may want to speak with the school board and find out what your options will be. We have been told that if the school isn't able to meet his needs then we may be able to get them to pay for him to go elsewhere--whether it be them paying for him to be at a private preschool that would better suit his needs or busing him to a nearby school district.

[marieangela]

Our EI is home based, too. Helena started having a PT and a developmental therapist come when she was 3 months old. We will probably be starting speech therapy as well, when she is a bit older. She is only a little over a year old now, but we have already discussed what happens when she turns 3 with her case coordinator from the Alliance for Infants and Toddlers. We seem to have great resources where we live. Our case coordinator will help us through the transition from EI to a school for special needs (if she needs that). We have DART (not sure what it stands for) preschools in the area for special needs preschool.

[ElsieLC]

Originally Posted by confustication

Oh, also, can I mention the horrible guilt that goes along with wondering why two out of three kids have something other than 'normal' going on? I feel lucky that they are healthy and I suppose in the grand scheme of things that's the most important thing, but I also want to stomp my feet and have a temper tantrum because it's not fair that my kids can't just be "normal" happy kids. Healthy attitude for a mom to have, right?

You are so normal to feel this way! I remember getting together with other moms and wondering to myself why I couldn't have their babies instead of a hearing-impaired baby. I asked every doctor we saw if I had done something wrong.

I still have temper tantrums occasionally, because it's a lot of work! And friends don't understand! They are supportive but they don't really know what it's like.

The EI services around here are birth to three. The program we're in has home services once a week and a playgroup/parent ed meeting also once a week. At first the home visits were really weird--having a stranger come to my house and tell me how to interact with my baby to facilitate hearing and language development felt like having someone tell me how to parent my child. But as I got the hang of it and got to know the specialist better, it's been a wonderful thing in all our lives. Our specialist is giving advice based on top-notch current research and it's working! DD is testing at or above chronological age on all the measures of development.

I know of one family that is home-schooling now that the kids have aged out of the EI program. There are resources for this kind of thing (the people at the EI program helped that family get set up to homeschool).

[sbgrace]

I think most of us special needs parents have had the same or similar thoughts and feelings ourselves. Vent here as much as needed.

Our EI was home based as well. My son would have needed the school system after EI but we're rural too and the program at the time he was entering had a horrible reputation and what they told me he would receive was just not going to work so we homeschooled. We have done private therapies at times. Autism is the only one we're doing now but we've done speech, OT, PT, VT at various points. I'm thankful for Andrew's autism diagnosis in that it made insurance pay for that stuff. Otherwise I guess I would have done what I could myself after he aged out of EI.