EI mamas (or dads)--Please give me your thoughts on this (long, sorry)!

[jenfromnj]

So after debating about it for months, and being discouraged by our pedi who didn't think it was necessary, we had DS evaluated a month or so ago by EI, and he qualified for services. We had our follow-up meeting today, and my head is spinning a bit. Some things surprised me, so I was wondering if you wouldn't mind giving me some insight as to whether these things are "normal" in your experience.

1. The original evaluation took place at the worst possible time for DS. I had requested that the evaluators come at any time except for 12:30-2pm, DS's typical naptime. Of course, the only time they could accommodate me was at 1pm (and ended up being 1:30), so I had to keep DS up and he was an exhausted, uncooperative mess. Therefore he wouldn't do a lot of the tasks they presented, or follow the commands given to him. I told the evaluators what he typically would/could do, but was told that, for the most part, they could only take into account what they actually saw. While I'm happy that he qualified, I am concerned that his evaluation was not a very accurate picture of his abilities, and that everything is based upon this inaccurate depiction. They also explained that that the eval criteria takes "points off" for things like not being potty trained by 24 months, which seems crazy to me.

2. Related to 1, they recommended a 3-4x per week therapy initially. That was more frequently than I'd anticipated, to be honest, and I was a little concerned that they recommended such an intensive regimen. I asked about this, and was told that given DS's age (he's a bit over 2), and his tendency to be slow to warm up to strangers at times, they wanted to "jump start" things. This might sound silly, but my gut reaction was "goodness, is he really that bad off?". His eval scores were barely in the qualifying range, and I don't know anyone who receives services this frequently, so I wasn't sure what to make of it.

3. The evaluators today mentioned their concern in the original eval over his lack of sustained eye contact. To be honest, he spent most of that eval with his head on my shoulder, fighting sleep. When he would comply with the evaluators' request to look at them, he'd look for a few seconds, then put his head back down. I feel like this is a huge issue, but I can honestly say I do not believe DS has any issues with making and sustaining eye contact. Even our pedi, who we saw after our meeting today, kind of balked at my mention of this, and said "I've been talking with him for the past 10 minutes and he's held eye contact the entire time".

So now I'm not sure what to do. I was told that re-evaluating him was not an option through EI, that the results are what they are, but that a notation was included to record that he was not at his best during the eval, and that they think that the issues would have been the same even if he'd been at his best.

I do want to do everything possible to help him reach his potential in every way, but I want to make sure the help he's receiving is appropriate, and I'm not 100% confident of that at this point. We're considering a private evaluation, but not sure if that's the best route, either.

If you've been through the process and have any thoughts or insights on any of this, I'd appreciate it!

[JTsMom]

We didn't receive EI services, but my experiences with private therapy have been that this type of thing is not uncommon, and that once the actual therapist who will be working with him meets him, things will be adjusted pretty quickly. I wouldn't stress too much about it, honestly. I do find the number of visits they are suggesting shocking though! On one hand, it's great that they are so ready to provide so much help. On the other hand, holy cow, that's a heck of a commitment that you'd have to make! I'd imagine they'd change that pretty quickly too though. Most people have a really hard time getting any services, and here they are pushing them on you. Crazy!

[sariana]

I'm inclined to say take whatever you can get. But if you really think the frequency recommended is too often, you should be able to request a different schedule. It's not all or nothing, is it? I remember having to agree to the services for my son. I never disagreed with the EI evaluations, so I'm not sure what would have happened if I had said I wanted something different.

You also could try it for a time and see how it goes. If your son really does not need it, they will be able to tell that and may recommend a modification. In general states (I assume it's funded by the state?) don't want to have to pay for anything more than is required.

[Indianamom2]

Wow. I've been through EI for speech and fine motor delays twice now. The first time was with DD, who had a pretty significant speech delay and some fine motor issues. She actually has now been diagnosed with ADHD, possible mild Aspergers and anxiety as well as SPD. Even despite all that (and all the signs were there then, just impossible to really diagnose at that age), she only had therapy once a week (maybe twice when for the brief time that we had both fine motor and speech overlapping, she graduated out of developmental therapy pretty quickly).

I think 3-4 times a week sounds like A LOT, with the caveat that if this is only for the first couple of weeks, it might make sense (to help your son warm up faster). Not to mention, it's going to cost quite a bit unless you have no cost participation (depends on your income).

My experience with EI is that they recommend what they think is appropriate and I ultimately decided what to do. With DD, I knew they were right and went with their suggestions. With Ds, I had been through speech before and wasn't as sure that he needed a ton of help, so I suggested an every other week schedule and ultimately told my service coordinator when I thought we were done. That's one of the nicer things about EI...you don't have to agree to anything that you don't want to do. Their suggestions are guidelines, not set in stone.

[Pyrodjm]

NAK
I'm an EI provider. Here's the thing. If he didn't do something during the eval but does it when he start services(ie. eye contact, following directions) They will work on something else. Its not like he will be penalized because of it.
I don't know how much of which services your DS will be receiving but sessions 4-5 times a week is not unusual here. How much of that is speech? how much special ed? OT?

If you want him to receive services, I wouldn't bother with a new eval. Your son will only get EI services until he is three anyway and will then be evaluated again.

[crl]

Unless it is a financial issue (how EI charges, if at all, varies by location), I would just accept the services and after he has had therapy for two or three weeks, I would see what the therapists say. If that would cost a ton, I might say I will accept once a week services. I know you can always decline services, so I am guessing they would let you accept a scaled back service plan?

Catherine

[brittone2]

Only have a minute but I would say go with it for now and talk to the therapist who will be working with him once services start up (usually different from the therapists on the evaluation team).

You can express your concerns about what happened during the eval. THe therapist, within a few sessions, will likely have a good idea whether eye contact is a concern, etc.

Is he only qualified for one type of service or more than that? Services several times a week would make a little more sense if there are multiple areas of concern (for example, a need for speech, OT, and PT or something similar). IME, 3-4x a week if only for one service would be highly uncommon, but that's just going of of my personal experience. If there are multiple domains involved, that wouldn't really be all that uncommon.

Not being able to take parental report always puts the therapists in a difficult situation. The catch is that many evaluation tools have very, very specific criteria for what "counts" as a skill, and without actually observing that skill being completed, you can't really know whether it would meet the criteria. Again, this is understandably frustrating for you as a parent because it is not particularly helpful to not have a really accurate representation of DC's skills. On the flip side, usually the therapists are not the ones doing the scheduling, and their hands are somewhat tied. Evaluations are set up in such a way that the criteria are very, very specific and it really doesn't always work well to go by parental report. If a parent reports DC can do X,Y,Z, I would often note that in the evaluation report, but in terms of scoring the actual evaluation using a specific evaluation tool...I usually could not use parental report. Does that make sense? It is frustrating to both the parent and the evaluation team, but there isn't really an easy way to get around it sometimes. Scheduling during a more ideal time would have helped, but sometimes we bump into this even during optimally scheduled evaluation times. Parent report can only be relied upon to a certain degree.

You can always turn down services or go with less often. You could adjust once you and the therapists get a better idea of what the real concerns are.

I would just talk to the therapists that come out to actually work with him, and express your observation that the eval was not done at an ideal time and so forth. Let them know that you'd like to know their impressions of your DC's skills as they get to know him a bit.

[Gena]

I agree with PP that once your child starts services the therapists will get a better idea of what his abilities and delays actually are. Then you can adjust his schedule, if appropriate.

What area(s) was he found to be delayed in? What services are they suggesting?

My DS qualified for 10 hours of services a week. Most of that was in a preschool-like toddler class held at the EI center. It was wonderful for him.

[arivecchi]

Why does your pedi think it is not necessary? My pedi said the same thing and in hindsight, I should have listened. Some kids are just a bit slower than others.

Trust your gut on this.

[WatchingThemGrow]

My DS2 had the same experience with it being during his naptime, but his was ON his 2nd bday. He played for 4-5 minutes, then screamed bloody murder into my chest the rest of the time the evaluator was there. I actually had to leave the room with him b/c he would not calm down while he was near her. She took the reports of what I said, but the real therapists met with him and set their own goals for therapy according to what he could do. We do 2x/week speech.

[llama8]

Take all of the services you can get!! They will adjust once they get to know your child and get a better evaluation working with him.

My friend's son is in EI. He has it 4 times a week. It is not that unusual to have it that often. He is showing a bit of improvement too and his parents are very impressed by the services.

[o_mom]

You do not have to take all of the services they are offering. Is it four different services 1x/wk each,2 services 2x/wk, or 1 service 4x/wk? If it is one 4x/wk, then tell them you can't start off that quickly - ask for 2x wk and after a couple weeks ask the therapist if it needs to be more or less. If it is four different services, then maybe pick the 1-2 that you think are appropriate and then you can add later if those therapists think it necessary.

Also, look at your costs - some places max out per month, so if you go with 4x/wk, it may not cost you any more than 2x/wk (I think ours maxes out at 8 sessions/month).

[sunshine873]

I agree with PPs - go with it. DD was almost always at her worst with the EI evaluators. I know it's really frustrating to see them get "marked down" for something that you know they can do, but it's just one evaluation. When the therapists come out, they'll do their own eval & will quickly adapt their recommendations based on what they see with your DS.

Also, EI is supposed to be a team approach, including input & approval from parents. You do have a say in what services your DS gets. I would say go with their recommendation to start. Give it a few weeks, a month, whatever, see how you feel after a little bit of time. If you want to adjust from there...that is your right as a parent in the EI system.

The bottom line, the majority of therapies at this age are kind of "play-based" & getting more services than he needs won't hurt him. Go with it, but listen to yourself along the way. You are the one that makes the final decision.

From a Real-life perspective...EI services were a relief for me, and gave me ideas of what I could do to help DD too. Good luck!

[egoldber]

It sounds like they have flagged him for autism/Asperger's based on the eye contact issue and lack of cooperation. I think it is very unusual for a child with only an expressive speech delay to qualify for that many services.

Have they told you yet what services he will be offered? I would make my decision based on that. I would not feel obliged to accept services that you do not think that he needs if they are based on a diagnosis you do not agree with.

[jenfromnj]

Thank you for all of your advice and insight. It is one type of service, 3 to 4 times per week. That does seem like a lot, but what many of your said makes sense--I think I will accept the services initially, work with the therapist assigned to us, and see what she thinks of things once she's had a chance to meet and work with him. They did say that it was an "initial plan", but I didn't get a chance to ask what exactly that meant--unfortunately the therapists were over 20 minutes late to our meeting yesterday and it was a huge rush.

We will pay a fee share, but there is a maximum monthly amount, so it won't be too different for 3 or 4 times per week versus 2. We're hoping that we'll be able to tell fairly quickly whether it is overkill, and of course, we're more than willing to devote whatever resources we have available if DS truly needs it and is benefiting from it.

I also think that the way everything is being handled is just making me a bit uncomfortable with the whole process. However, I do think that we're going to give it a chance for awhile and see what we think, since we've already gone this far with it.

[jenfromnj]

It sounds like they have flagged him for autism/Asperger's based on the eye contact issue and lack of cooperation. I think it is very unusual for a child with only an expressive speech delay to qualify for that many services.



Beth, do you think they would have given any indication that this is the case? That is another one of my concerns, that there's more to what they are thinking/concerned about, than what they've indicated. This is especially concerning since they based this really intensive program upon a 20 minute, awful meeting and then refused to re-evaluate, and haven't been very forthcoming with the rationale or the details (though I am supposed to be getting a packet with more detailed information in the mail, per the meeting yesterday).

[brittone2]

Beth, do you think they would have given any indication that this is the case? That is another one of my concerns, that there's more to what they are thinking/concerned about, than what they've indicated. This is especially concerning since they based this really intensive program upon a 20 minute, awful meeting and then refused to re-evaluate, and haven't been very forthcoming with the rationale or the details (though I am supposed to be getting a packet with more detailed information in the mail, per the meeting yesterday).

IME it varies. I know you aren't addressing me, but I've worked on evaluation teams so I thought I'd comment. THerapists have to tread carefully as they can't make a medical diagnosis, but we often see signs that lead us to have concerns. On an eval team, I'd be less likely to actually raise the concern over something like autism directly unless we were seeing something very clearly concerning vs. when I'm the treating therapist and am seeing the child weekly for services. As the treating therapist I feel I'm in a better position to say "here's what I'm seeing, here's why I'm concerned, this could possibly be consistent with X, and I think following up with Y would be a good idea" (meaning suggesting seeing a Dev. Ped or neuropsych).

An eval team may hint at greater concerns, but sometimes we just aren't sure from that one visit. I generally feel like I can tell when kid isn't cooperating vs. actually seeing concerning behavior.

It is hard to say. I have been on many evals where we get that hunch something more is going on from what we are observing but didn't really indicate anything to the parent because there wasn't enough to go on. I've been on eval teams where we've suggested evaluation by a dev. ped, etc. right away.

[Gena]

It sounds like they have flagged him for autism/Asperger's based on the eye contact issue and lack of cooperation. I think it is very unusual for a child with only an expressive speech delay to qualify for that many services.


This was my thought as well.

Beth, do you think they would have given any indication that this is the case? That is another one of my concerns, that there's more to what they are thinking/concerned about, than what they've indicated. This is especially concerning since they based this really intensive program upon a 20 minute, awful meeting and then refused to re-evaluate, and haven't been very forthcoming with the rationale or the details (though I am supposed to be getting a packet with more detailed information in the mail, per the meeting yesterday).

My son's EI therapists suspected autism (or were certain of it) well before we did. But in my state EI cannot diagnose, officially they can only identify areas of delay. So the therapists treated him as though he had autism from the start, without explictly saying so. After a few weeks, they shared their suspicion with me and started gently urging me to get a full medical eval from a developmental pediatrician. I am still grateful to these therepaists for the work they did with DS and for their gentle guidance through the process of getting a medical diagnosis.

[JTsMom]

They may think that, but again, it won't matter that much once his therapist sees what he's really capable of. She'll probably come in with a list of goals, then adjust them when she sees that he can already do X, Y isn't a problem, etc. If you're not concerned about ASD at this point, I really wouldn't let it bother you. Take what you can from the parts of the eval that you think are accurate, and ignore the rest.

[egoldber]

Just to preface and say that I am not in EI all this is obviously my opinion. But I just find it really hard to believe he qualified for services 4 times a week with only a mild expressive speech delay. The only time I have heard of that many services is for 1) global developmental delays or 2) autism/Asperger's. Is it speech services 4 times a week?

I would probably wait for the package and then see what it says. If there is no explanation in there then I would call the case manager and say you are confused why he needs such intense services.

Unlike others here, I did find the EI disruptive to our lives and DD did not always find it fun and enjoyable. And based on what you have seen, it does not seem like your office is well run or efficient and that would make me a little concerned for future visits as well. With visits 4 times a week (will this be in your home? at daycare?) your whole weekly schedule will be based on EI. And there is nothing wrong with this if it is what he needs. But I don't hear that from you.

[llama8]

My friend that I mentioned in a previous post has a 2.5 year old son that doesn't speak and doesn't make eye contact. When we had a play date with him when he was 17 months, there was clearly something wrong. Everyone suspects it could be autism or a spectrum disorder...but maybe not.

He gets EI 4x a week and is starting to point and come out of his shell a bit, but doesn't talk or understand words or commands. He is just starting to respond to his name.

EI has never used the word autism and they can't diagnose. Right now, he is listed as having a communication disorder that he is being treated for, but autism is clearly on the table as a possibility.

[arivecchi]

And based on what you have seen, it does not seem like your office is well run or efficient and that would make me a little concerned for future visits as well. With visits 4 times a week (will this be in your home? at daycare?) your whole weekly schedule will be based on EI. And there is nothing wrong with this if it is what he needs. But I don't hear that from you. This is a red flag to me as well. This sounds very much like the office I dealt with here in Chicago. They never communicated clearly with me and they just seemed disorganized. I was not happy with the experience. Definitely read the report carefully and I would discuss the report with my pedi before making any decisions.

FWIW, my therapists noted those same issues with DS2 and he's just fine now. He was aloof and distant for a while and now he is very communicative and affectionate, so don't jump into any conclusions. :hug:

[jjjo1112]

It sounds like you need to see the assessment form and see how he scored in the different categories. I have never seen a child receive services 3-4 times per week for just a mild/moderate speech delay. I would assume that he scored lower than his age in multiple areas (gross motor, fine motor, social, etc) for them to be recommending such an intense schedule. If you don't want to wait for the papers in the mail, I would put a call into EI office and ask. They should be able to break down each category for you. For example; your son was rated at 15-18 months for expressive speech, 12-15 months for expressive speech and so forth. If he only scored low because of bad timing, they should quickly realize that during his therapy and adjust the schedule accordingly.

[Simon]

That does sound a little off, relative to our experience.

Ds2 was evaluated about 2 months ago and they used our input, a lot, in the assessment. They might ask him a question or give him some directions and depending on whether he did/did not do something, the evaluators would then check with me and ask, "Is that a typical response for him?"

Also, per scheduling appointments, the EI team asked us how often we wanted services and we had no idea what to say. We started with every other week, to allow time for us to work on HW and for Ds2 to improve between sessions (he started at only 18mo). Currently, I am thinking that is *not* enough but that is partly because I am seeing more red flags that this is/could be a serious problem. So, I would love to be offered a schedule like you have but we didn't start there and I will certainly ask for more sessions soon. IIWY, I might not want to jump in with tons of sessions until I see if the relationship is working for my kid and I like the therapist myself. I love ours and Ds2 is very relaxed around her but that won't be everyone's experience.

[sste]

Jen, we had that many services but we had a "global developmental delay" diagnosis so DS rec'd 1 PT, 2 speech, and 1 developmental. He was not walking OR talking OR responding consistently to his name at 19 months. However, the one thing that everyone who saw him assured me of is that there was zero chance he was on the spectrum - - they acknowledged alot of uncertainty about all aspects of his testing and diagnosis but that one.

I think my DS did turn out to have somewhat of a quirky development curve . . . but we also think (we can't know of course) that EI helped jumpstart certain aspects of his development and I now wonder if the four sessions per week plus my round the clock "therapizing" hyperstimulated certain aspects of his verbal development - - no joke!! If your DS ends up with four sessions we can start our own n of 2 longitudinal study. :)

Do you notice any behaviors that you think seem atypical? Do you see your son alot with groups of same-age children? I don't recall you mentioning anything like this and it sounds like your pedi doesn't either. Would your insurance cover a trip to the developmental pedi?

What we did was to solicit two external opinions/evaluations. And they split - - the most experienced one said he would be fine and in fact she thought much more than fine based on some learning curve tests she did and the other outside opinion was more concerned and felt like DS's overall development had diverged quite a bit from the normal trajectory. We decided to err on the side of caution . . . EI was I think cheaper in my area then than it is today so it was not a major financial hit and my son loved the therapy.

[Pyrodjm]

I'm guessing you have not received the report from the eval yet. When you do it will have listed your son's percentage of delay in each area. This is what is generally used to determine the amount and frequency of services.