early intervention

[summerm]

Hello, thanks so much for the encouragement to get my baby evaluated by Early Intervention. They have determined that he qualifies for services. They judge that he is delayed in these in three areas:
"social/emotional" - "adult interaction"
"communication" - "receptive/expressive"
"attention/memory" - "problem solving"

Soon we will meet with them to find out what services they have decided on. During the evaluation, one of the people pointed out that because he is a baby, she doesn't even know what to offer us if he is delayed in a couple of those areas listed above. And doing internet searches, i myself don't know-- I wish I did know, though, so I could be prepared for our upcoming meeting to discuss services. Do any of you have any leads you could share with me?

[Kristen (ColeysMom)]

I'm confused. Are you saying that they evaluated and they don't know if they have the ability to help, or are you saying that the person that did the evaluation isn't knowledgable in determining specific therapies?

If I understand your question correctly, in that they have already determined that he is delayed in those areas...then it depends on the specifics of where he is at as to how they will approach the intervention.

For example, my son showed expressive language delays VERY early on...he was not reacting to in interest to anything he heard around him, nor did he reciprocate anything...sounds, raspberries, kisses, playing, etc. I think he was about 11 months when they became worried...he was already under a watchful eye, and at 11 months he would have been expected to be at a 8 month level due to his prematurity...if I remember right, so please don't freak, just in case I have my timing wrong...

But to attempt to answer your question, the speech therapist first started just rolling a ball with him and playing peek-a-boo...and a few other things. That was to get him to understand the whole 'format' of conversation, my turn your turn...we were pretty stuck there for a LONG time! When it became clear that his expressive was delayed (as he couldn't even effectively express hunger), I'd say by like 15 or so months (again judged as a 12 mo) they started pecs and sign language. By 18 months there was little if any progress, so we were referred to specialists (developmental peds, a neurologist and communication enhancement experts) all at the local children's hospital.

I'm sure that this specific example is relatively meaningless to your situation...but I just wanted you to understand how individual it is...is it possible that this is what they meant in your conversation...I honestly hope that they didn't mean that they wouldn't know how to help a baby...Coley was enrolled in EI at 3 months old, and he was having therapy then for sensory & eating difficulties...at 3 months old he was literally a newborn and weighed only 5 pounds.

It does also take some time for them to discuss, draw conclusions and make recommendations, before they can get that all scheduled.

When will you hear back?

[summerm]

Hello Kristen! I'm so happy to hear from you again. You gotta update your photo with a close up of the chunka :-)

Sorry for the ambiguity. During the evaluation, the person interacting with my baby happened to have mentioned that if my baby ended up being determined to be delayed in social/emotional, she wouldn't even know what therapies to recommend. My impression was that she was implying he was too young-- that people his age are usually referred to EI because of physical delays. She didn't say they won't help us; it's just an offhand comment she made. Maybe she meant to say something else or maybe I misheard...

We will soon have an IFSP meeting with the coordinator and the evaluator who made the comment. I was just thinking that since the evaluator might not know what to do with a 9 month old with my baby's type of delays, that I could try to research or ask around for ideas I can bring up in the IFSP meeting.

Thanks so much for giving me the details on what they did in your son's therapy. It's actually quite helpful to know how therapists help improve a baby's skills. And your situation is relevant since my baby needs some help learning conversation format, as well as we can't tell from him crying whether he is hungry vs. tired or something else (except by going by the clock and keeping track). I actually wonder if some of these things can even actively be worked on... like he gets so frustrated, if I pull away the bottle to shake it up or something, which I usually do when he's almost finished with the bottle in order to mix up the small clumps, he will scream for it until I give it back. How can you teach someone who doesn't understand language that he can just relax because he will get the bottle back in a couple seconds like he always does? Therapists sure have their work cut out for them. I wish I was one of those miracle mamas who are so intuitive and all that who can just lay a hand on a frustrated baby and instantly calm them down.

Once I got a kiss from my baby... not reciprocation, which he won't do-- completely out of the blue... either that or he was just scratching his lips on my shoulder :-) I think it was a kiss though, and it was the happiest day ever :-)

Is Coley being reassessed for the ASD label? Or am I once again misunderstanding your signature...

[peglem]

from Summerm:Once I got a kiss from my baby... not reciprocation, which he won't do-- completely out of the blue... either that or he was just scratching his lips on my shoulder :-) I think it was a kiss though, and it was the happiest day ever :-)

It WAS a kiss! That's my expert opinion!:D

[Kristen (ColeysMom)]

Hi Summer,

Ok, it sounds like you had an OT or a PT doing the evaluation, which is fine. All the therapist should be skilled at performing the evaluation, but of course they are only skilled in their own specialty for therapy. This is why they will take the results back to the center for review and the coordinator will set up services based on where your child is at right now.

Like, it may not make sense to work on some things before some other delay is corrected first. When they meet to discuss the approach all the specialties will be there so that the ST (for example) can give her take on what is more important to address first.

I'm not sure which specialty would work on social/emotional...that may be a speech goal or an OT goal. It could be one of those things that needs to take a back seat until the communication skills are addresssed.

Coley also had social goals, but those were addressed in group play sessions after he was 15mos old...but that of course doesn't mean you will see the same approach...it all depends on your specific results.

Although, some of Coley's frustration issues were addressed immediately in massage classes (infant & cranial sacral). Then the rest were targeted through the speech therapist.

I would think that the problem solving issues would fall under OT...but not sure.

So I think what the evaluator meant was that SHE didn't know how they would tackle it (because the main problems are out of her area) and that you'd need to wait for the coordination meeting for any hints...because SHE wasn't sure...and that does NOT mean that they can't help...

I feel for you Summer...the most difficult things with Coley were understanding his basic needs...I've come to believe the reasons that it was SO hard for him to communicate them, was not just because he couldn't express himself, but also because he himself was not understanding the problem.

His eating/hunger challenges were compounded by discomfort and ill feelings from the foods he was eating. We can see that now MUCH clearer...but even now when he eats something (or too much of something) that affects him badly...he often cannot tell us that he's 'sick' or whatever...his behavior tanks and then we know. Although we do have a rare time where he will say he needs to lie down because he feels sick... It's a hard road...but TRUST your instincts the WHOLE way and don't let ANYONE tell you not to! I knew all along that somehting in the food was banging him up...but the docs all told me no...until he was 2 and the seizures were found...then we found the source of the seizures: fructose!

As for Coley, Yes he is in the process of being reassessed. He had a reevaluation last month where his developmental ped "withdrew" her PDD diagnosis! BUT she referred us to a psych for an evaluation. I am prepared to get something like an ADHD diagnosis...but that isn't going to happen until Nov...MAN I hate the back-up!!!!

Meantime, DH & I are trying hard to work on his focus and behavioral issues...hoping that at least some of it is attention getting tactics that we can eliminate before the evaluation, so that we get a good clear picture of his current status. He starts kindergarten in September, and he is being moved out of special-ed into regular ed! :D

So take that all to the bank...we work VERY hard, like everyone else here...but I think starting early made a HUGE difference in our case...as time goes on the 'experts' do get better...which means that you are in an even better position than we were 5 years ago... You have every reason to be optomistic, but strap on your seatbelt, and put on your armour, because it's a rough ride for sure! And by no means are we done! But I do think the worst of it (his infancy/toddlerhood in our case) is over! I'm petrified of the teens though! But what mom isn't!

Hope that helps some! Do you know when you'll be hearing back from EI?

[summerm]

Hello Kristen,

Our meeting with EI is next week.

Actually the person who did the evaluation and made the comment will be the only person who will be at the meeting from their side, other than the coordinator! Hence my suspicions. We actually had two people doing the evaluation, but only one will be at the meeting (I'm glad for this-- the other evaluator was really pushing for not providing services even before they had done the assessment). We were originally going to have three at the meeting, but they didn't see the need to bring in the speech therapist because of his young age-- the other evaluator said she can do that assessment istead.

If they come back to me and at the IFSP meeting say, "great news, we 're going to provide your baby with 10 minutes of therapy a month!" I'm not sure what justification I can make for more. I can probably suggest having a more intense start and then tapering off to what they want, but I don't know any facts and figures I can use to say something like "Well actually for babies with problem solving delays like him, 1 hour a week has been shown to be most effective in catching the baby up in a matter of months vs. it leading to a long term problem that will leave him unprepared for school" or whatever.

Congratulations on Coley's excellent progress!! Mama you deserve a looong break!

[peglem]

Just my opinion, I don't have experience with infant therapies at all. It occurs to me though, that the speech therapy is the most critical thing here, because the social/emotional and attention issues are so wrapped up in communication. Speech therapy isn't just articulation, its about communication...and you can't make emotional connections without communication. If your child has receptive communication delays, that affects attention, because how well do you pay attention to what you don't understand? So, I'd be pushing for the speech and language therapies most of all. A good SLP should integrate those other things into therapy for a total communication package.

[Kristen (ColeysMom)]

Pegs is right...and I was originally confused by the whole idea of talking versus communication...it was EI that cleared that up for me. Almost everything a baby does is foundational to communication...

You are not going to be able to make a statement like that, because therapy is ALL individual. Getting the 'right' therapy as early as possible is the key. Where 'right' means what's appropriate for your child. His mix of skills and difficulties is what goes into determining that.

I would just sit back and wait to hear what they have to say.

We started out with 1 OT visit per week (1 hour) in the very beginning, @ 3 mos. By 12 mos he was up to 1 OT visit and 1 ST visit per week. By 15 mos 2 group therapies @ 3 hours each was added. And all of it included 'homework' for us to do so that he was actually getting MUCH more than just those hours with EI. Then by 30 months we added ABA/floortime 3x/week. Just to give you an idea.

So, I would just sit expect them to come back with a reasonable and appropriate plan. After which if you do not feel satisfied that issues are being addressed appropriately then I would simply make an appointment with a developmental specialist at your children's hospital. From there you can either receive services there or at a satelite clinic (if that's possible given distance & schedule & all) OR they can basically dictate what services EI provides.

Who else will be at the coordination meeting? In our case the coordination meeting was only their folks...but all of them....we were not present.

Their decision was delivered to us (in the IFSP meeting) by the OT that would start his therapies and the coordinator. In that meeting they communicated both their 'plan' and additional things, like their desire to get him evaluated for Sensory integration Disorder (by a clinic) and a feeding specialist (at the hospital) and to a GI for intestinal damage (from the NICU) and some 'extra's' from their group, the message therapies and some other stuff I can't remember right now..and then put timetables and schedules out there.

Of course I didn't have to comply with any of the additional evaluations that they suggested...as it's not coming from his ped or something, so it's not like going against medical advice or something, so it was delivered more like a suggestion. But they also sent reports to his ped, so we discussed their 'suggestions' with the ped and followed most of thier advice. Some of it the ped poo-poo'd...like the sesory integration evaluation. But at the time it was a wishy-washy type thing. Docs didn't really hold stock in it as a REAL thing...that has since changed, and insurances are even covering it now. So that's even an example of things getting better for you...

I could probably go on & on...but I think you get the general idea...so just sit back and have faith...I'm sure that they will do the right thing. It is of course possible though that they are stretched past their abilities with their case load...but all is not lost if that is the case either...just wait and see...K? I'm sure everything will be fine!

[summerm]

OK, I'll just sit back and have faith! Thanks so much Kristen!

And thanks, Peglem, for your expert opinion on the kiss and for your thoughts on the speech/communication emphasis.

[RathyKay]

I'm a little late chiming in, but yes on the communication. Tom would have been about 6 months when he was evaluated for early intervention. (The NICU follow-up at 5 months referred us to EI.) But, that was right before summer, so services really didn't get started until end of August. We didn't quite have someone coming to our home once a week. Our regular person... she had a nutrition background. She did a little PT, played some games, little bit of communication, and offered lots of advice. She came twice a month. The OT came once a month (she actually came for PT, but they didn't have a PT). The speech lady didn't start coming until a few months later, and she came once a month.

This didn't last long until they referred us to another organization for Tom's PT. They gave us PT once a week, but we had to go there. They had the advantage of not following the school schedule (and all of its breaks and holidays), so we had many more sessions, than if EI had given us PT once a week.

I believe at 18 months Tom qualified for center services through the county. I didn't send him until he was closer to 2. Kind of a preschool, or pre-preschool. He started one day per week (I think it was 2 hours), and then switched to 2 days per week. At that point, he had speech weekly, and they did it in class.

The other nice thing at that stage was that they offered classes for parents. There were feeding classes, general parenting, CPR, and communication classes. I do remember the "Talking with toddlers" class, based on Hanen's "It Takes Two to Talk: A Parent's Guide to Helping Children Communicate." The speech therapist loaned me the book a few months prior, and I really didn't "get it" without taking the class. (Which is my round about way of saying, I wouldn't buy the book unless you were taking the class.) But, listening to Mili talk about RDI... it kind of reminds me of this class. Although, this class only touched on a small part of RDI. Or maybe RDI breaks this class into even smaller chunks for the kids that really need it? The nice thing with these classes is that they're geared toward the kids (and parents) who need extra help. They'd probably help your average kid, but they're aiming for the kid that needs the extra mile.

Anyway, I don't know if this helps at all. Probably more of a walk down memory lane for me. Like Kristen said, pay attention to what the therapists are doing, and try to do some on your own. And ask about parenting classes. The ones I took were offered during the day and they provided child care, including my non-EI kids.

[Kristen (ColeysMom)]

OMG! That's right...I completely forgot about the parent classes too...and they are all free!

There was a HUGE difference between EI and ABA for us, not just the format or whatever, but also EI INSISTED that I participate in the therapy, whereas ABA requested that I disappear and not be a distraction to him.

I did get 'homework' from both, but it was a lot easier to understand what we were aiming for and to adapt as the week and his skills progressed before the next visit with EI...I felt MUCH more comfortable and MUCH more supported. It wasn't so much watch, learn & copy...it was more like: "this is what we are aiming for so that we can do this next...so here are several exercises and techniques to work on so many times per day for so many minutes per day...next week we will start this (if he's ready)" So there was a lot of incentive & motivation to meet the goals each week. And it was easy to see if he maybe needed a couple more minutes or whatever...

Our ABA therapist, who was awesome and did tremendous things for Coley, advocating & all, basically said that ABA was structured more for Coley than for me...which kinda threw me, but since we were seeing good things I didn't complain. But I mostly got something like: Today we worked on this, next time will work on that...I've noticed this works well when he's _____ (frustrated for example)... Try to do some more ______ (pretend play for example) with him and I'll see you next time.

But I think every place is different, but Kathy is right if you find that they aren't so insistant on your particpation...get in there and ask questions! And even set up your own 'homework' too...ask them how many times per day you should practice and for how long...