Anyone else frustrated with EI?

Don't get me wrong I am totally grateful that Emilie and Trevor qualify for EI services and they are doing fantastic for being born 3 months early. They both automatically qualify since they were both under 2lbs. 12 oz. at birth. They both started walking about 4-5 weeks ago, say a few words, eat great, sleep great etc. I think they are doing great. Our PT does too. My frustration is when we do our "reviews". The PT has a check off list that she goes by to see what they are doing and where they are. I get frustrated in the fact that some of the things she asks if they can do, we just have never done with them or thought about doing. Like, can they pull a peg out of a peg board? Well we don't have a peg board, but they can put things in and out of a container. Or the sippy cup came up and I mentioned that the Easter Bunny just brought them straw sippy cups because they can get a regular sippy in their mouth but can't quite get their head back to drink from it. Well of course, this put up a little flag, that they can't do this. Here is I was all proud of myself for getting the straw sippies and they can drink from them independently and I feel like I'm not helping them by giving them these. On her check list she mentioned to me that it said at 16 months they should try to drink from a regular up, with no lid. I don't think we had/let our oldest DD drink from a cup without a lid until she was around 2, it might have even been 3. She always used a sippy to prevent spills.

So in terms of fine motor and a few others they were around 11-12 months which I think is great and I'm not complaining. My frustration is a baby that was born at full term may not be doing these things either and no one would really worry because they wouldn't know. Since mine are being "watched" and "monitored" they know what all they are doing and not doing.

Maybe I'm not making any sense in all this, but it just frustrates me. I know they are doing so well for being born so early and I feel very lucky about it and count my blessings everyday.

Does anyone else who receives EI feel like this? It's just hard when you feel ike they are doing so well and not really behind, to hear that they are a few months delayed. And I know I need to account and adjust their age for being preemies. Please someone tell me I'm not alone in feeling like this.

Thanks for letting me ramble.

 

In order to know if they are catching up, they need to be evaluated at their actual age--that is just how things are done. Also, there is a range of "normal" and not being exposed to something is considered--usually a n/a on the checklist. At this point, I wouldn't worry about what they aren't doing, and work on what they are. I remember with Jon, when he was evaluated at 21 months one of the questions was if he could alternate legs walking up and down the stairs--well, he didn't do it until he was 3 or so, but he also didn't qualify for anything at that time.

 

Most parents don't know what little things they should or should not be doing. When was the last time you looked at a book to see what the goals for there age are and saw putting pegs in a hole? I bet you never saw it. These people are trained to give certain test thats there job our job is to learn from them so the next time they retest the kids can show them how good they are at it. I remember when mine had there 2 year old reavaluation. Well Nick, Bethany was already done with EI. They asked me if he knew the diffrence between girls and boys? I said "Nicholas what do boys have that girls don't?" He quickly said a winky. That so stumped her, and I quickly explained there are two of them and they see each other and bath together. They have to ask the questions even if they don't expect the child to be able to do the task, just so they can place there developmental age.

And remember they may be able to do things but when they test them the child may not work well with the therapist, That happened with Nick all the time but he worked great with his ot. I learned a lot from her I was always asking what they should be doing and what I could do with them. I felt frustrated and like I was not doing what I should be doing with them, in the beginning until I started to ask questions and found out they where just trying to detirmine the placement age.

Or when they ask about if and when they something and how often they did it. duh

I never used a sippy with my oldest son he was straight on a cup at 9 months, with the younger two I would give them water in a cup in there high chair and in the tub that way if they spilled it my floor got washed with the clean water. In the tub it just gives them practice before soap of course.


QUOTE(summerfun @ Apr 12 2007, 06:20 PM) [snapback]216771[/snapback]
Don't get me wrong I am totally grateful that Emilie and Trevor qualify for EI services and they are doing fantastic for being born 3 months early. They both automatically qualify since they were both under 2lbs. 12 oz. at birth. They both started walking about 4-5 weeks ago, say a few words, eat great, sleep great etc. I think they are doing great. Our PT does too. My frustration is when we do our "reviews". The PT has a check off list that she goes by to see what they are doing and where they are. I get frustrated in the fact that some of the things she asks if they can do, we just have never done with them or thought about doing. Like, can they pull a peg out of a peg board? Well we don't have a peg board, but they can put things in and out of a container. Or the sippy cup came up and I mentioned that the Easter Bunny just brought them straw sippy cups because they can get a regular sippy in their mouth but can't quite get their head back to drink from it. Well of course, this put up a little flag, that they can't do this. Here is I was all proud of myself for getting the straw sippies and they can drink from them independently and I feel like I'm not helping them by giving them these. On her check list she mentioned to me that it said at 16 months they should try to drink from a regular up, with no lid. I don't think we had/let our oldest DD drink from a cup without a lid until she was around 2, it might have even been 3. She always used a sippy to prevent spills.

So in terms of fine motor and a few others they were around 11-12 months which I think is great and I'm not complaining. My frustration is a baby that was born at full term may not be doing these things either and no one would really worry because they wouldn't know. Since mine are being "watched" and "monitored" they know what all they are doing and not doing.

Maybe I'm not making any sense in all this, but it just frustrates me. I know they are doing so well for being born so early and I feel very lucky about it and count my blessings everyday.

Does anyone else who receives EI feel like this? It's just hard when you feel ike they are doing so well and not really behind, to hear that they are a few months delayed. And I know I need to account and adjust their age for being preemies. Please someone tell me I'm not alone in feeling like this.

Thanks for letting me ramble.

 

I understand. Ainsley's been in EI since two months (referred right out the NICU, also has a qualifying diagnosis), and at every re-eval, there's a new thing I had no idea she should be doing and then I feel like I'm not doing all I should. This wasn't EI, but she had a NICU follow-up at 6 months and there were things like "Can she pick up a Cheerio?" and that was tested, and lo and behold, she couldn't because I hadn't even introduced finger foods like that, or given her small choking hazards to pick up. She "failed" nesting objects at the last eval, didn't say "uh oh", but hey, I don't really say "uh oh" either.

Yes, I realize there are questions on the rjust because and every child is not expected to do these things, but sometimes I do feel frustrated and wish they would just say she's doing good instead of pointing out what she's not doing. Her next eval is in a month and I think she might get discharged, I'm not sure what else we need to work on now that she is walking. And to be honest, I am not real fond of her current PT, so I think that does color some of my feelings.

 

I did not have a good experience with EI. My son, Camden, was diagnosed with Sensory Integrative Disorder and EI was going to have a speech therapist come to the house to work with him instead of an occupational therapist. I specifically asked for an OT, but they gave me a ST instead. I refused their services and sought out private therapy on my own.

 

Yeah, I get frustrated most of the time too. It would be nice if they gave you a list of what you should be doing beforehand so you could at least work on it. Not to mention all kids develop on their own timeline and that doesn't seem to be taken into consideration. My DH is ready to get rid of all services all together since all in all the kids are doing pretty darn good for being 3mos premature, but I'm hesitant if something comes up it will be more difficult to sign up again.

 

QUOTE(summerfun @ Apr 12 2007, 02:20 PM) [snapback]216771[/snapback]
I know they are doing so well for being born so early and I feel very lucky about it and count my blessings everyday.



This is the part of your statement you need to focus on. It sounds like Emilie and Trevor are doing wonderful :hug99: I used to dread evaluation time. As well as I thought Nathan was doing when I read evaluation and saw how delayed he was it was hard. Our EI always used his corrected age on evaluation up until age two then they used actual age. I am surprised they did not make adjustment in evaluation for corrected age. Also, the thing with the evaluations is your child may have that skill, but if they don't do it 100% of the time they do not get credit. As Nathan has grown I have learned that evaluation is only part of big picture there are so many things not reflected on the evaluation. Like I tell DH in order to get EI there has to be a delay so this scoring also helps qualify them for services. Good luck! It sounds like your children are doing wonderful, don't put too much thought into what you are reading go by how you feel they are doing and your mommy instinct. :hug99:

 

This is my first time posting on this new board. I hope I get it right.

My girls have EI as they were 10 weeks preemie. My son also had it for a speech delay.

The girls get therapy 2x/week and I can't wait until they drop it to once/week. I have no problem with them (physical therapist and nurse) coming out and they haven't had any formal evaluations yet. I have no expectations for my girls. I know things will happen when they do and I took this belief when my son started out in EI.

Your babies are doing miraculously well and I hope you see that. Try not to get stressed out if they don't do one or two things on the list. They will get it eventually.

About the sippy cups- I still give my almost three year old one because he can't be trusted. Big deal!

Just my 2 cents.

 

Nick qualified for EI after his 6 month apt. I was SOOOOO frustrated with the entire process.

They kept scheduling and cancelling (evals, apts, everything). By the time he had his first official PT apt he no longer qualified b/c he had caught up.

I was glad he had caught up but incredibly frustrated with the entire experience.

 

Thanks ladies. I guess I just needed to hear that others feel this way too. My head keeps telling me that are doing great, don't worry about the evaluations, they have to have something to measure them by. It just frustrates me that I didn't even think to do some of the things they mention. And who even knows if my oldest DD did all that stuff, she probably didn't, but no one was watching because she was full term.

Anyway, thanks for letting me blow off some steam.

 

I know just how you feel. I felt the exact same way.
I always feel that quite often the "professionals" are very book-smart but not real-life smart. My OT who was working with Jake did not have children. She needed to leave for personal reasons and another OT took her place. She had twins and was much more practical and down to earth. I found that helped out a lot.

Your pics in your tickers are adorable by the way!

 

I just wanted to say I have had a a very good experience with my son's OT. I think she is amazing and I feel very comfortable with all her suggestions. The same can not be said for many of the other therapists I have dealt with in the process. My son has sensory integration disfunction and it seems to me that the other therapists that work with him at his "play group" either do not understand what this is or do not know how best to work with him. This is annoying to say the least! I think what matters most is getting someone who is passionate about helping your child if they aren't maybe you could ask for a different therapist.

 

We've had very good experiences with EI, and I'm sort of sad that at our recent evaluation neither Elliot or Clarissa qualified for further services - of course I'm thrilled that they've caught up, but I've really thought all the help we've gotten has made a huge difference!

For our evaluations, we were told that they would base it only on what they saw that day - not on what our therapists had seen them do in the past. In part this was with the hopes that they would continue to qualify, but we weren't even borderline this time.

As far as "preparing" for evaluations, that might not be such a useful thing. You wouldn't want to work on the specific skills they were going to be tested on so that they did great on the evaluation and then lost their services . . . at least not if there really were delays. That said, we were always given specific skills and activities to work on between visits (for awhile we had OT 1x/month each, PT 2x/month each, and a generalist weekly). They all showed us things we could do to help with development and I always wondered how parents without EI knew what to do with their kids :huh:

Anyways, rather than focusing on what they didn't do so well on, try keeping track of their progress. Ours went from 3-5 month delays at their first eval (at 8 months) to a 3-5 month delay at 14 months to being 3-5 months AHEAD at 26 months . . .

Good luck with it all.

-Rachel