View Full Version : A story. The system puzzles me sometimes.

04-23-2009, 08:21 AM
Hey, all.

Alex is pulling along well. His two speech therapists are thrilled, thrilled that as soon as the trach came out, he seemed to be reaching back to pick up oral development steps that he either stalled out on or skipped altogether. They tell me this is a very good sign.

Alex babbles constantly. We still are very deficient on lip consonants (Bs, Ms, etc.) His babble is at about a 9 month level, but is oral and expressive communication are much higher. We can tell when he is "talking" versus "babbling" by how many consonants we hear. If he says a lot of consonants (dadananagagaooooooooo) its a babble. When he thinks he is saying real words, there are almost no consonants. For example, "Hello" is "ee-oh" and "Mickey Mouse" is "iee-ou".

Anyway, he is progressing fairly steadily. I won't bore you with the details. Feeding is frustrating in that he has suddenly and abruptly become 2, adding a whole new dimension of "will and won't" to something he now apparently "can" do. *sigh*.

So, several members of our EI team think Alex will be better acclimated in an alternative preschool. I know this is something several of you are debating for your kids, and I've talked to some of you about it. We think it is not a great fit for Alex because of his pace of progress. Our EI coordinator is pretty emphatic, though, as is the social worker, because "Alex will become frustrated in a typical school setting because no one can understand him." A typical 2 year old in preschool would have 50 oral words, we are told, but Alex currently at 22 months as 31 words and signs, most of which aren't intelligible to the uninitiated. And, they say that a preschool teacher won't understand any sign, so it will make things worse because we stopped teaching Alex sign in hopes of encouraging speaking. So, they say, he will have no way to communicate. :confused:

Now DH and I don't intend to put Alex in preschool right now, nor do we think he would actually qualify for the local alternative school because you need two developmental skill set delays and feeding doesn't count. If you eliminate feeding, Alex only has a speech delay. (Speech, not language.)

So here is the question I asked our speech therapist (who is being carefully neutral -- she has to given her position in the system.) It is pretty hard to understand the words spoken by a "typical" 2 year old. In that case, I would expect the adults to encourage the child to "speak better" and in extreme cases get him or her a speech therapist to assist. But, since Alex is "in the system" and (I guess) had a trach, they just want to send him to a school for delayed kids. I know that speech is their only concern because they have told me so.

Again, Alex is not actually eligible, as we found out, so this is a moot point. I'm just tryiing to figure out the logic behind EI's position, and I'm really struggling with it. I honestly think that if he hadn't been trached, no one would have ever suggested this.

Please, defend them if you can. I really want to understand. At this point I'm losing faith that they are acting in his best interest, and it is making me doubt my ability to trust other things they tell me.

Alex's mom
04-23-2009, 08:55 AM
Is there an opportunity for Alex to be part of an integrated preschool class?

My Alex just started preschool last month and she is in a class of 6 kids who all have significant physical and or cognitive delays. All of these kids need one on one attention - thoughout the day there are about 1-2 kids per adult in the room. There is a larger class that is split, half of which have an IEP, the other half "typical". The same teacher teaches both, sign is used whenever appropriate in my daughters class, I can't speak for the other class. (Alex can't physically sign yet, but we supplied them with flash cards of the signs that we use with her on a regular basis)

Maybe they're shooting for Alex to have more one on one attention. They could be afraid he would be a bit lost in a larger class size. But I'm confused - if he's not going to qualify for the alternative school - and your leaning towards not sending him - why are they pushing it? How do you find Alex to be around other kids his age? Are their playgroups, gymboree type settings you would be able to join to help you get a feel for how he might do?

04-23-2009, 09:11 AM
I realized a few minutes ago that I forgot to mention one key fact (in my mind). If Alex joins the public school system, he loses the right to have a one on one speech therpist. All school system speech is in a group setting in 20 minute increments.

I'm not sure that the coordinator has realized that Alex won't qualify. Our SLP checked with her boss, and THEY think he won't qualify and aren't sure why his coordinator and our social worker think he will. Honestly, I'm not sure who is right, because both should know, but DH and I are choosing to believe the people who say he won't qualify.

In group children settings, Alex shows some signs that he really needs to be in a preschool or at least play group a few days a week. He is too used to one on one attention, but as far as social development on the IEP scale, he last tested as advanced. I think that is different from his peer play ability, which needs some practice but isn't too far off from what I can see. He is timid, but he likes to follow the big kids around if they will let him, and he likes to play next to the other kids. Does that make sense? Alex is my first, and my prior experience was as "aunt", so I'm not as comfortable in this area. He is a little behind is cousin who is 2 weeks older -- tries new things more slowly, is less aggressive, but I think these things are tempermental. He can be VERY aggressive when he feels the need to. Just ask his cousin the day she took his Big Bird!

I haven't heard about an integrated class -- at least not in the case of typical/atypical. The alternative school is nonsegregated in that all children that qualify are grouped together. The IEP folks were thinking two preschools -- a regular and an alternative, but that means school 5 days a week, and I don't think Alex is ready for that. He is still adjusting to everything. I do think a few days a week could be good for him, but DH is reluctant to start right away, so I'm working on playgroups for now and we are planning for the fall. Money is an issue, too, but hopefully that will start to turn around soon.

I wonder if attention is what they are concerned about? My reaction is just he opposite -- he needs one on one speech like he has, but he needs to be less dependent on one and one caregiving. Maybe there is a happy medium.

Alex's mom
04-23-2009, 10:25 AM
When you say he will lose the right to a one on one ST, do you mean he loses a ST provided by school?

I'm wondering if this is an option for you. Allow him to become part of the preschool (free) and seek ST outside of school via an SLP that might be covered by insurance because of medical reasons. I would think (but don't truly know) that what your insurance covers and what the school is willing to provide are two different things.

Our preschool program is 5 days a week, we are choosing right now to send her for 3 days. We based what days she goes on when the therapists will be in the classroom. (ST, PT, OT)

04-23-2009, 11:39 AM
Karin, I think maybe the EI team may be being a little over cautious because of Alex's past medical history. I don't see any reason why he wouldn't settle in a regular preschool.
Sam attended a regular preschool - along with trach and O2! he had a nurse carer with him, but was 'taught' in a group with the other children. There were about 10 kids in the group and he did pretty well, despite his autistic traits. he now attends full time mainstream school with his own TA and has blossomed in that environment. whilst I know he still has a significant delay in some areas, there are other areas where he is well above the other kids. The only disadvantage to this has been the lack of support from outside agencies. In a special school SALT, PT, etc are all on site. Sam still gets some input, but not as much as he would if we had sent him to a special school. Sam is still non-verbal (I hope that will change when the trach comes out, but I'm not holding my breath). We may have to consider other options when it comes to senior school, but for now Sam is completely happy in school and is learning. In the uk, they are very much into integration as much as possible and I am really pleased that Sam has had this opportunity.

I hope I haven't confused you more with all this. You know what is best for Alex so I would go with your gut, you know him better than anyone.

Good luck

Julie xx

04-23-2009, 11:59 AM
We're in a similar situation here with Shelby and all I can do is tell you how this has gone for us.

*** I don't mean to hyjack your post, but maybe it would help both of us if parents could share their kids' preschool experiences ("typical" and "special") with us? ***

Shelby turned three last Sept. (08). Her trach had been out since March 08 and I thought she was ready for preschool. Talked to other parents, visited a couple of church preschools and enrolled her in one with a great reputation and that I had a good feeling about.

Shelby didn't fit in. It broke my heart to know how hard she works at things that come so easy for other kids (talking) and to realize that her teachers were, let's say, less than thrilled to have her in their class. :mad: Maybe, well, very probably, I'm over-sensitive on this issue. But to me it was obvious that the teachers were strugglling to understand Shelby and to get her to sit still during circle time and other typical preschool stuff.

She was the only one not potty trained in her class. She signed lots and speaks (knows colors, shapes, abc's, numbers), but mostly only her family and therapists can understand her. Then she started having seizures in November and I pulled her out of the school.

Any teacher will tell you that the difference between a great school experience and a bad one is ... the teacher. I decided I didn't want Shelby to be in a place that wasn't happy to see her. My decision was whether or not to put her back in school for this coming up fall or just keep her at home. She'll be 4 by then and she really seems also desperately longing for friends and playmates (which again, I feel she's rejected because of her social/developmental delays).

So, I've enrolled her in the PEEP (Preschool Exceptional Education Program) here in my public school. She qualifies now (she didn't last fall) because of the significant language delays and the seizure disorder. I'm doing this because: 1-- they have a school nurse, trained to deal with seizures, 2 -- I really think Shelby needs to social interaction and "school readiness" activities, 3 -- I really don't think a "typical" preschool is trained/willing/accepting enough to have the patience and love to deal with a kid like Shelby. :(

As we were warned, the trach of course delayed speech for Shelby, but also delayed her socially and developmentally - no matter how hard I feel like I worked with her -- exposing, teaching, signing,and she had ST, OT and PT. More significantly (for Shelby) the trach masked the fact that her brain injury would take as its main form of expression -- her speech/language. Most trached kids won't have to deal with this. But it's been a huge disappointment to me to see how long and hard the road to speech has been for her.

All that long-winded stuff (but it's been bothering me for a long time and I'm sorry to use your post to get this off my mind) to say that I don't think there's a "perfect" fit for kids like Shelby, or maybe even Alex. Alex might do great in a typical preschool, or like many of these kids, he might need some extra help for a while.

Karin, it *might be* that the ones that are pushing for the idea of the exceptional preschool have seen this happen enough that they are assuming (rightly or wrongly) that Alex might need that extra attention for a while. Or they might be pushing this for funding purposes, too. :rolleyes: Who knows? I guess only you can know if you feel Alex needs one or the other. And if whatever you choose isn't a good fit, you can always pull him out.

It's a tough decision; one I've been struggling with for a long time here.


04-23-2009, 12:53 PM
Dominic has been at pre-school since last September and loves it. It's just a normal, regular pre-school. Three staff in the pre-school are trachy trained, and one is his dedicated carer on each day he attends. He loves it, has made loads of friends and the children in his class just accept him as he is. His speech is massively delayed, but has come on loads since starting pre-school. The other children understand him too (when many adults struggle!).

Things are different in the UK, but wanted to encourage you to do what you think is right for Alex, rather than what a specialist thinks. You know him best after all.

04-23-2009, 01:50 PM
i think it's a ridiculous suggestion. so what if alex doesnt' communicate as well as some other kids - since when do we compare things like that for access to childcare? why on earth when his speech is coming on and will continue to do so would you prevent him from going to a regular school. so the staff might have to make an extra effort to understand - you would hope that they would be glad to do so!

emily is in additional support care at nursery but only by our personal choice. there was no question that she could attend regular nursery if we chose and she is all set to move across to mainstream once her tube is out.

i see your dilemma with one on one v group activities. we are lucky that we can have both. her OT/SALT etc is all done at nursery which i actually think is the one downside of having her in additional support care - if she were in regular nursery all that stuff would be one on one at home.

glad to hear that alex is doing well :-) we know all about the no no no of a kid being 2!!!! it's like a relfex with emily: no this and no that! aaarrggghh!!!

04-23-2009, 02:19 PM
I really appreciate this candor. I'd like to keep the discussion going by responding a bit to some of the questions raised.

Stacey -- I wasn't terribly clear about the changes the preschool would mean. If we enroll him, we leave Early Intervention behind and enter the local public school system. Our public school system has a great reputation, but I don't really like what I'm seeing in their response to needed services. I am desperately hoping Alex tests out of needing an IEP by the time he's 3 because it is specifically in his delay areas (speech and feeding) that the school system seems to be failing. If we take the preschool option (assuming it is even available), it would mean we drop our IFSP and get an IEP. Currently, EI provides a one on one speech therapist that will travel either to our home or to the private preschool where I enroll Alex. If we drop out of EI and go to the alternative preschool, we will need to take the school system's speech program. They do not provide one on one speech but instead work in group settings. I have no reason to believe that Alex will progress in a group speech session. I mean, he's 2, and he doesn't particularly want to do what the ST is asking, so if he has to sit in circle time to get his speech, I just don't see it working. I can, of course, continue to use private therapy. (His feeding therapist is private.) I might even be able to swing using our current EI speech therapist if we agree to pay her privately, but that is debatable.

Hope -- you make some good points. And no, it wasn't a hijack. I know you've been debating this with Shelby, and the problems are related. It may be that these ladies are thinking that Alex needs a cushion because a lot of kids struggle, like Shelby. (And I am very sorry about that, BTW.) I can see better how if Alex is shunted aside because he has trouble communicating, and he throws a temper tantrum, then he can become someone the teacher dreads seeing, and that would be hard to hide from him and from the other kids. I guess I'd like to think that his teacher would be compassionate, but she might also be harrassed.

It may also be money. I can't rule it out. If we go to preschool, EI no longer has to bear the financial burden of Alex in a tight economy. Plus, Alex is grandfathered onto an older version of the system that requires them to send as many different therapists as he requires for his individual problems. The new system recently implemented has one therapist for the child's main problem, who will also try to address other issues as they arise, with coaching from their teammates. (For example, if Alex were to again need a PT, as he once did, we can insist that the PT come back. If we were new to the system, we could not, and we would need to rely on our ST to provide PT services as well. For the record, I advised the County that this is a lawsuit waiting to happen.)

Julie -- my instincts are with you and Laura. I think Alex will do well with typical role models. He has had limited experience, but he seems to be adapting well. He likes other kids, and they seem to like him. (The girls like him a little too well, IMO, but it was a little 3 YO boy that came up to kiss him in the playground last week. LOL!) Alex's little friend Nathan was decanned a year ago and went straight into typical daycare. As far as I know, he adapted well. It was an adjustment, to go from one on one nursing care day and night to a group setting, but it is what his parents thought was best, and he seemed to thrive. I would hope Alex would be this way as well. As we have discussed from time to time, I have a family member with many of the same issues as Sam, and he was "mainstreamed" his entire schooling, and I think he was better off for the experience. I don't think he would have done nearly as well if he was put in an alternative program.

This is a good thread, for general purposes. I think I can start to see why EI might want to recommend this path, but I still don't think it is the right thing. These ladies have always been way more pessimistic about Alex's potential than I ever was, so I need to factor that into account as well. I wish his speech therapist felt herself in a position to offer her actual opinion, because she is the one who works with him most, but alas, I understand why she feels like she can't. I totally forgot to ask his feeding therapist when I saw her today, but she has no problem giving me her opinion, and I think I'll go give her a call.

One last thing for our non-US situated friends. I will not pretend to even begin to understand how school systems work elsewhere. I barely understand our own system sometimes. So, I wanted to mention a few things that may be obvious to me but not so to you. Our public school system (no cost) runs K-12, meaning roughly from age 5 to roughly age 18. In certain cases, such as special needs kids, the school system can take responsibility for education as early as age 2. Our EI or Early Intervention system is a generally free system for delayed kids that is run on a state by state or county by county basis to provide needed therapies for children ages 0-3. Alex, being 2 in June, is currently in the EI system, but EI is suggesting transfering him to our public school system. There is no "public" or freely available nursery or preschool system in our area that is state run. If I choose not to enroll Alex in the public "alternative" preschool, then I will have to pay for him to attend a private pre-school or seek a scholarship. We could choose from a school run by a religious institution or a for-profit childcare center, or one attached to a private school for older kids. At least, those are the options in our immediate area.

All -- please feel free to share your preschool stories, as Hope suggested. I think we could all learn a lot. Alex is waking up, so I have to go.

Alex's mom
04-23-2009, 02:40 PM
Karin, I didn't realize that Alex was only going on two years old. ( I was thinking when I saw your original post - wow, Alex was older than I thought - I assumed he was close to 3 because they were trying to send him to school)

Knowing this - if it were me - there is no way I would give up at one on one therapy at home with EI.

I think you are 100% correct in saying that he just won't benefit as much if he's placed in a group setting. And I always felt like I learned so much from all of our EI therapists. It is a hard thing to not be a part of that anymore. There are so many other things you can do on your own to integrate Alex into social settings that you seem to be looking into already. Preschool just doesn't seem necessary right now.

With all this being said - my little one is having a fabulous time being around other kids on such a regular basis - and there is a great staff of teachers and therapists - but knowing this, I still would not have cut short our EI services for it.

04-23-2009, 03:09 PM

I am sorry but I cannot defend them at all. I know that many have what is in the best interest of the child but due to constraints on money and service delivery they are very limited to what is easiest and cheapest or should I say more cost effective for them. I agree with you that Alex would do great around "typical" peers modelling speech and behavior. As for him not being understood...I also agree that many two year olds who have not have the same medical challenges as Alex are impossible to understand, two year olds get their point across in gesture, pointing and yes yelling...so there you have it. Stacy mentioned insurance, I didn't see if you had responded to that. We were able to go that route with Amanda as well as we wanted to augment what the district was offering. If you find a good private ST they should know how to work the system so insurance covers it if you have that on your policy. Sometimes it is hidden under inhome nursing/therapy or some such place, you may need to comb through your policy. Some have limits to amounts of visits per year, some don't. That might be an option. Also, since he is 2 he is still under the early intervention part of services and they are supposed to be pushing toward a natural environment for the child which could be a home setting. My only guess is that in the alternative preschool they can offer the services more easily because all the kids are in one spot. I am pretty jaded about service providers but try to give them the benefit of the doubt..just can't see it here.

Ainsley's Mom
04-23-2009, 03:31 PM
Karin it is so interesting that you posted this thread. I just toured a local developmental preschool (special ed) earlier this week and had a lengthy discussion today with Ainsley's teachers about what to do for Ainsley next year.

Even though Ainsley is a child with severe delays I question whether this is the right environment for her. We are used to a more integrated environment with more "average" kids and are reluctant to enter a program strictly for the developmentally delayed with medical issues. I feel like she would get less modeling of desired behavior. Plus I think a 4 day a week program is a bit much for a just-turned 3 year old. But I was the kind of parent that favored a 2 day a week co-op preschool for my typical kids at age 3.

I do think that many developmental preschools are moving toward an integrated model, including typical developing kids as well as the "severely untypical" (I'm going to say that because I think we fit in that category, even though it's not very PC). I think that is what you need for Alex is a preschool that has both types of kids together.

I'm surprised to hear that they want to move him out of birth to three and into the public school system. Here in WA it is ALL AGE BASED. You cannot attend at the public school unless you are 3. In fact Ainsley's birthday is October 18th and she will transition then even though the school year starts the month before. Bummer for us because it means transitioning at an odd time.

I can't remember if you work or what your daycare situation is and if that is a factor. At his age I would honestly skip preschool and stay in one on one speech therapy if you can manage it and enroll him in some classes that you can attend with him to help facilitate communication. It's likely he'll progress a lot in the coming year and when he's 3 you will have a much better idea of the type of school you want for him. If you need preschool for daycare then that's a whole different thing.

I don't know if that helped. I got a little confused about what you were asking, since it sounds like he won't qualify anyway. Sorry if I missed the mark.

04-23-2009, 04:07 PM
Thanks continue for the ongoing good discussion.

Susan -- you didn't miss the mark. DH and I are strongly resisting the idea of the county preschool for Alex, and we started this discussion a few weeks ago. I only just found out a few days ago that Alex probably won't qualify no matter what we decide, but I haven't had a chance to talk to the EI team about that yet. For all I know, they will come back and tell me he does qualify after all. I have what is a decent, although not ideal, relationship with our service coordinator. She knows to talk frankly to me if she thinks that I am making a decision that is not in Alex's best interest because I so desperately want him to be typical. She waived that flag at me during this discussion -- she thinks that if he is enrolled in preschool, it should be this one and that a typical preschool would be a mistake. We all (except DH) think some sort of preschool sooner, rather than later, could help with socialization. We don't *need* a preschool right now, even for daycare. I left my job about a year ago to take care of Alex after it became clear that we weren't getting rid of the trach without an awful lot of time in the hospital. I had hoped to go back by now, but I used to be a real estate finance attorney, and they are being laid off in droves now. My job has been eliminated.

What I am struggling with is what do they see that I don't -- why do they think this is a good idea when I don't? After a great deal of thought about it, and discussion with some of you privately, I still think they are wrong. (All of this was before I found out he probably didn't qualify, and that is a discussion we haven't had with them yet.) So, now I am moving away from the question of "what am I not seeing" to asking, "why are they pushing this?" Sadly, I have begun to question their financial motives and wonder if they simply want us graduated out of the system and into the school run program -- basically, off their books. We are taking up time with one of their very best speech therapists, and our insurance is not paying them very much. Plus, as I mentioned above, we have more "service rights" than newer parents.

But, I don't want to think about them that way. They have been really good at providing services before -- including those that I didn't really think were needed. Or, is this more of the same -- they think he is more at risk than I do???? Is he a statistic to them, despite the fact that they have made me believe they are seeing him as an individual?

As far as insurance goes, we are fortunate to have a lot of options with our plan. We are using many of them right now in getting private feeding therapy, and if we still have problems next year when EI ends, we will keep going with private therapy in addition to whatever the school system provides. (OH -- and if we don't choose the preschool, the school still has to provide speech, but it will still be in a group setting.)

Gosh, I don't mean for each of these posts to be so long. Its weird. I know what I think is right, but I keep wondering if I a deluding myself in expecting Alex to be typical eventually -- and sooner rather than later? I don't think so. I know we have a ways to go yet, but I think we'll get there. I just don't understand why it feels like EI isn't really giving him a chance to be "typical".

I figured if there is a good justification for what EI is recommending, you ladies and gents would know it and would help me see it.

04-23-2009, 04:22 PM
PM me and I will give you my cell phone number. I can tell you about our experience much better in person than written. Basically, Nathan has been in a regular preschool since he was very young. Our ENT strongly suggested this as Nathan has no delays--just an articulation/breath support issue with speech. Nathan has thrived and excelled in this setting. About the public school system, we had to hire a lawyer who specializes in special needs cases to deal with our school system, and things are great.

04-23-2009, 11:06 PM

Because Alex is only 2, a lot of things can happen w/ speech in a year. Although they claim he won't qualify now... my thought is they aren't a part of the school district (SD). At least that is how it works in CO. In 6-7 mo, you can have Alex evaluated by the SD and see what they say. Ayden is actually a smart kid according to our SLP. Even before he was 3, he knew his A,B,C's and numbers 1-10 by sight verbally and in sign language. He now has a couple word recognition - like 'up' and 'hop'. Even with this, Ayden does automatically qualify for an IEP b/c of his hearing loss. We should qualify for SLP, according to the prelim from the evaluators. Even though Ayden is 3, we don't have a final IEP. We have opted to wait until next fall to decide what to do for school. If his pulm says school and other kids will put his lungs at risk, we will request home bound service, but we will see in the next 6 mo.

Just some random thoughts of ours... :)

Ainsley's Mom
04-24-2009, 05:21 PM
We all (except DH) think some sort of preschool sooner, rather than later, could help with socialization.

Why do you think he needs help with socialization at this age? Meaning are there issues?

04-24-2009, 08:55 PM
In Indiana the early intervention program is called first steps. This is for kids who are at risk for delays. Nathaniel received speech, occupational and physical therapy in our home. This program stops when they turn 3. At the time further testing is done and if they qualify the next step is preschool in the school system. In Wayne Township there is both a regular program and a developmental program. Nathaniel qualified for the developmental program and started last September. We were concerned about him being in that program because his only delays were speech and feeding. His genetics doctor was concerned that he wouldn't be pushed to do what he was capable of. At that time he was decannulated and after the big adjustment of being away from Mommy and Grandma he seemed to enjoy it alot. He didn't seem to make a lot of progress in his speech. The speech therapy was in a group and we thought that was the problem.

When he had to be retrached in December we felt he would be better suited with a different teacher. The first teacher was very young and somewhat disorganized (but very very kind to Nathaniel). She was very nervous about his trach. He moved to the other teacher and Nathaniel has made wonderful progress. He is learning to talk by singing. At first the only thing you could understand was his singing but now it has started to apply to his speech as well. We are even starting to hear consonants! He has also made great strides in learning to share and respect other peoples space.

I guess my point is that even though we were worried at first the developmental class was the best option for him. My biggest advice would be to be very picky (if possible) about the teacher. Nathaniel's first teacher was a terrific teacher but just not a great fit for him.

That being said it seems to me that Alex is still so little for them to be concerned about his communication skills. I think that most 2 year olds can only be understood by the people who are with them the most. That doesn't seem to me to be a delay.