School based vs. Clinic based therapy - pros/ cons

[LaurieG]

DD (age 3) has been getting OT and ST consistently since September at the local children's hospital therapy clinic.  They are working on oral motor skills and sensory processing to improve her feeding.  We have had her tested several times by E.I. and she never qualified for services because she isn't developmentally delayed in any large domain (Gross motor, Speech, Fine motor, Cognitive, etc).  But we have pursed therapy at the clinic several times due to various concerns or red flags.  She would get therapy for a few months and then stop for awhile.

Recently the OT and ST have been bringing up other concerns, which I have mostly shared as well.  Things like attention and very targeted issues with hand/ eye coordination, visual perceptual stuff, etc.  DD's syndrome puts her at risk for NVLD and so these areas where we are questioning if there are issues are all consistent with her risk.  The OT just finished doing a standardized test on her on which she performed overall quite well but had these targeted skills where she was down in the single digits for percentile for her age.  So the testing confirms what all of us had been wondering but we have been unable to say for sure until now because she has so many strengths that it is difficult to see the weaknesses. 

So now she is old enough to be eval'ed by the school district and I'm not sure whether I want to go that route.  I don't know whether I want her identified as special needs in the school system and I don't fully trust the school system to provide what she actually needs.  I figure they are financially motivated to prove she doesn't need services, where the hospital based therapists have no financial incentive either way - they get paid the same whether they see my kid or not.  On the other hand, the school based services are free and much more convenient to us and ultimately if she is going to need services in school anyway than we might as well start early.  But I don't know if she will need services.  Maybe with going the private therapy route she will catch up in these areas before she starts school. 

To further complicate the question, the OT and ST recommend putting her in preschool next school year to give her practice around other kids.  I could get her to qualify for the public preschool program if I want to be totally open about everything (share the test results, her diagnosis, educate them on the risk factors, etc).   But if I take her for the eval for the preschool program and don't share everything I suspect they will not pick up on any issues, just as the EI people have not.  And in that case she may not qualify to start the public preschool until the following school year.  We could send her to private preschool but that is yet another cost and I'm not sure they would be motivated to address her issues or even pick up on them.  Preschool would cut out on the time available to go to the therapy clinic too.

I guess one of my biggest concerns is that I will open up to the school district, share all the info, etc.  And then their assessment will say she doesn't need services and we will end up continuing through the hospital for therapy but now it is in her file and in the minds of the people who do the testing (some of whom we know socially but haven't shared DD's diagnosis with) that DD is special needs with all the stigma attached to that. 

So anyway, thanks for reading this lengthy post.  I appreciate any insight.

[KCMichigan]

I will tell you we did both EI, private therapy, and services through the schools.

We also did public preschool.

I disclosed all our information to the schools. It was helpful for their knowledge, the PT & OT both were thankful to see her history (took notes from private therapy).

She qualified for 'at risk' preschool (she did not have to show major delays, but rather have risk factors) for free and it was wonderful. It was all kids that were not eligible for Spec.Ed. preschool, but had risk factors that could impact their success in the classroom. Preschool really really helped her social skills- which is just something a one on one setting could not do, nor could we do it well at home.

She DID have an IEP and got PT /OT, but she and one other little boy had an IEP- the rest of the kids had no disabilities.

I was glad to do full disclosure since it put us all on the same page. It was great.  I felt it was a great choice for us in our sitauation.

Then we moved--I fully disclosed my DDs history and her IEP upon moving. New state declared her ineligible due to her academic success (even though she has gross motor and social delays) and ability to function in a classroom. Not what I wanted at all. We may now pursue private therapy (insurance).

She will get a 504 next year in Kindergarten to met her 'quirks' and sensory needs as well as any adaptations for her high fatigue.

It is hard. It does not hurt to go through the schools....the first eval - as referred by EI- (at age 2.8 ) DD did not qualify. Then when she was referred again by a community program at 3.5 she did qualify.

I dont think there is a great stigma attached to DD at all. Currently, I disclosed her past history with her current preschool. I think it helps explain some of her quirky behavior and also help them see how very very far she has come. They have been able to do some 'preventative' activities instead of trying to wonder why she reacts they way she does sometimes. Her teachers adore her and with the information they have on her they are able to see the whole picture.

[LaurieG]

Thanks for sharing your experience.  I'm glad to hear you have had a positive one.  Honestly, it is not my personality to be secretive but I have heard so many negative stories that I'm checking myself on this one.  I'm glad to hear the other side of the story.

We have 2 older kids involved in the school system and have nothing but positive things to say about all the people we have met, from teachers to aides to administrators.  So it isn't the people I don't trust - its the system with the lack of funding, etc.  I think I just trust our hospital therapists to be more responsive to her actual needs than the school. But if she is going to need special services by kindergaren and later than there is really no point in not being open now, since I do agree that the more informed the teachers and therapists are the better they are able to address DD's issues.

Last night's conversation with DH was "what are the chances that these areas that have come up on the testing will never be a big enough issue to affect her school work or social skills?" and we are thinking probably very slim.  From what I know about NLD it is pretty common for there to be no major red flags in preschool and then some kids just hit a wall in 3rd grade.  We don't want to be blindsided and have DD's confidence take that kind of a hit.  Better to have things in place and be working on the smaller red flags early, as long as they are willing to work on it.

[Emmeline II]

We disclosed as well. If a child's issues are going to impact them at school I think they need to know.

Ds K year was difficult and his school kept saying, "we don't consider ADHD before 3rd grade", but then proceeded to paper him with behavior charts and suspend him when they didn't work. Over the summer we had him evaluated by an OT and a psychiatrist, gave the OT report to his 1st grade teacher the week before school, and set up a 504 meeting at the same time. Though he doesn't have any learning disabilities other than having difficulty focusing, we wanted to avoid the "bad seed" impression he aquired at the last school when he didn't have a diagnosis. Ds' teacher said that she found the OT's report really helpful in understanding ds.

Also, the information exchange works in reverse as I just asked the Special Ed teacher to gather reports from his teachers to help his therapist see if/how the therapy has been impacting his school behavior.

[LaurieG]

Originally Posted by Emmeline II 

We disclosed as well. If a child's issues are going to impact them at school I think they need to know.

Ds K year was difficult and his school kept saying, "we don't consider ADHD before 3rd grade", but then proceeded to paper him with behavior charts and suspend him when they didn't work. Over the summer we had him evaluated by an OT and a psychiatrist, gave the OT report to his 1st grade teacher the week before school, and set up a 504 meeting at the same time. Though he doesn't have any learning disabilities other than having difficulty focusing, we wanted to avoid the "bad seed" impression he aquired at the last school when he didn't have a diagnosis. Ds' teacher said that she found the OT's report really helpful in understanding ds.

Also, the information exchange works in reverse as I just asked the Special Ed teacher to gather reports from his teachers to help his therapist see if/how the therapy has been impacting his school behavior.

I completely agree with this.  What I'm wondering, though, is whether there is a benefit to them knowing before there are issues impacting the child at school.  Or whether telling the teachers "X child has this syndrome and it might cause learning difficulties that might show up like this" biases the teacher to treat the child differently and lower the bar somewhat for that child even if it is not necessary.

In my DD's case, any problems with learning she is having are not affecting her functionally at all right now.  To nearly everyone who interacts with her - DH, MIL, FIL, her gymnastics teachers, her preschool teachers from where she attended last year (she is not in school this year), the EI therapists who have eval'ed her, the Parents as Teachers teacher who worked with her a few times to screen her, etc there is no difference between her and a "typical" child.  It is only me (and I am an OT, so maybe that is why I see things) and the OT and ST who have noticed any red flags and even then it was so mild that we weren't 'sure if we were just making things up.  The standardized testing that was done asked her to do things she doesn't normally do (like origami for instance).  She completely is unable to do origami or form shapes from play dough.  But it would be very easy to miss that piece unless you sat her down and said "do this".  So in a school setting, depending on the format it might be missed.  And she is still 2 1/2 years out from kindergarten so under other circumstances we might not choose to enroll her in any school for another year and a half, and by then maybe the origami thing will be a non-issue.  Or maybe not.  Who knows.  But these issues could be addressed through the hospital therapy department (at a cost of $30/ week for OT alone, which is difficult but not impossible) for now.  But as KCMichigan said the private therapy doesn't address the social skills like school can. 

I also fear something like you experienced with your DS's kindergarten.  Like ADHD, NLD often isn't recognized as something the school should address before early to mid elementary.  So without a formal diagnosis I worry that things will be brushed off.

[Emmeline II]

Originally Posted by LaurieG 

I completely agree with this.  What I'm wondering, though, is whether there is a benefit to them knowing before there are issues impacting the child at school.  Or whether telling the teachers "X child has this syndrome and it might cause learning difficulties that might show up like this" biases the teacher to treat the child differently and lower the bar somewhat for that child even if it is not necessary.

I also fear something like you experienced with your DS's kindergarten.  Like ADHD, NLD often isn't recognized as something the school should address before early to mid elementary.  So without a formal diagnosis I worry that things will be brushed off.

You can give the information/report at any time. I knew when I met ds' teacher at the open house that it would be useful to give her the report. Though with ds behavior issues disclosure is to his benefit, his teacher actually used the information instead of dismissing it.