What services would she get if in Kindergarten?

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My daughter is 5 and starting kindergarten in 2 month. She has an unclear dx. She has many traits that would lead to one to believe she is on the spectrum: many sensory issues (both seeking and avoiding), non-functional play (lining up toys, containerizing), problems with social/play skill, impulsivity, rigid ideas, and obsessions. However, on the ADOS she had last winter, she came out non-spectrum. We have been seeing a developmental pedi for three and still we have no definitive dx.

As part of her evaluation for kindergarten, she was giving a IQ test and scored in the 98 percentile. I believe that because she has a higher IQ and because she is a girl, it is difficult to give her a dx, so the developmental pedi is taking a wait and see approach. I am anti-label. I know if we walk into a doctors one day and they say she is on the spectrum, I will still walk out with the same kid. I know her. I know her unique strengths and weaknesses. However, with the school district a dx of "unique strengths and weaknesses' is not enough to get services.

I really feel like the reason to get a dx is so you can describe my child in two or three words. You can't accurately describe my daughter (or any of your children, I am sure) in two or three words. I could write a book about her. In a perfect world we would just work on her weaknesses and encourage her strengths without worrying about what words to call it.

Our Dev Pedi is known to be very conservative with dx'ing ASD. I know there are clinics in the area that I could go to and tell them "I need a ASD dx to get services" and they would give it to me. But I am happy with our current Deve Pedi and I don't want to doctor shop just to get a dx.

So having said all that, the bottom line question is do I push for dx just to get her services or do I let her start kindergarten without a IEP and see how it goes. The piece of information I am missing is, what services would she with a ASD dx and how much would they help her? I don't want to push for the label and then her not get anything beneficial from it.

She is currently getting private OT and seeing a play therapist.

Thank you in advance. This is my first post. I am glad I found this board.

My son went through kindergarten without a label and without services and I think the biggest issue for him was that the teacher never considered for a moment that his difficulty with coloring and writing was physical, instead of just laziness. He really pushed my son about it, and all that was counterproductive. We could see it happening but since we weren't aware of the ASD at the time, and had never heard of dysgraphia, we were a bit lost. We didn't think our son was lazy, but we also couldn't understand the disconnect between his clear intelligence and the lack of ability to perform in a school setting. This was a child that had shown interest in all things writing and artistic at an exceptionally young age.

The sensory issues with him weren't that big yet; they peaked a few years later I think.

Pragmatic speech issues were also starting to reveal itself, but no one was tuned into that.

I would expect services to include OT, speech, and possibly resource. More important might be the accommodations, with specifications allowing her to sit away from other children, providing more assistance with transitions, providing a safe place for her to escape to when feeling overwhelmed and, should dysgraphia show up, accommodations for written work.

I don't regret going into kindergarten with an open mind, however. We knew there could be something there (NO idea it was ASD) and had held off on the idea that we should first see how he functioned in the new environment. That was actually recommended by a country specialist we asked to observe him in preschool. More full awareness on our part could have prevented the one issue we saw in kindergarten, assuming the teacher would have been receptive.

So I'm no help, am I, lol?

I guess I would ask, what is the harm in getting a diagnosis, in your opinion? Also, I would add that one of my boys sees a dev ped that is different from the neuropsych who gave him the diagnosis, so it's possible to pursue a dx and not switch dev peds.

Edited to add: My boys are high functioning and turning three in a few weeks, so we're not where you are yet, although they are starting public preschool soon. I've also been happy with the services they've received thus far, so I may be biased.

Start kindergarden without diagnosis.
Services are not necessarily good for high-functioning, high intelligence children.
Think of grade school and junior high as times for the kid to gradually adjust to people and develop own ways of doing things instead of trying to conform to neurotypical development.

We got speech in K, but not yet OT. The main benefit aside from speech was that he was put in an inclusion class with both a teacher and an aide that knew about his issues and gave him the benefit of the doubt in trying to workout solutions. If I thought that was not necessary, I probably would have held off on a label b/c I am also not a label person. For us it was necessary to make it work, and also the speech was useful b/c someone was facilitating his social communication which he had no idea how to accomplish with out someone there helping him. He was very verbal, but socially in the weeds.

YMMV

Edited for spelling.

I totally agree that in a perfect world, labels would not be needed, and kids' weaknesses would be worked on and their strengths encouraged.

But (you knew someone would say this) it's not a perfect world.

My daughter sounds much like yours, re IQ and so on. She had a great, almost perfect, kindergarten teacher, and she flourished. But this past year in first grade, her teacher was convinced that she was lazy and spoiled, and that's why she had trouble following directions. The teacher even sometimes mocked her in front of the class: "<Daughter> is the smartest kid in this class but never follows directions."

So my kid's takeaway from this year is that she's "a bad-behaved kid," and other kids and the teacher don't like her.

So we are pursuing an ASD dx. It's a label, but it's a better and more appropriate label than "bad-behaved kid that no one likes." We are also lucky enough to live near a major ASD research center, and the doctor who is evaluating her did say, point-blank, that autism tends to present differently in gifted kids and in girls.

The services won't be much -- at best 30-40 min of speech and OT per week, (in our case the school services were of much lower quality than the private therapists we saw). A friend in another state said her child only gets 15 min per week! Your daughter would be more likely to be placed in the class with the teacher who gets most of the IEP kids (hopefully because she has more understanding and experience with learning and behavior differences than the other teachers) and has a shared aide to help her (our old district sucked, and the aides had no special training or qualification beyond a high school diploma.)

The one thing having a dx in hand might save you is time. You'll be able to request the IEP on the first day of kindergarten and maybe have it in place by Christmas. Without the dx, you might request it the first day, be denied around Christmas, spend 3 months waiting for an dx appt to become available, make a new IEP request in March, and then (if you're lucky) get the IEP in place by June or the next fall.

Everything varies a great deal by school district, though. I would strongly encourage you to find out if there is an autism support group in your area, and ask those parents what is likely to happen in your district.

I think it matters where you live. What kind of resources are available in the school district. My little guy is still in a HFA preschool class. However one of his friends who is also HFA is a year ahead. He is going into a special inclusion kinder classroom with a mix of HFA and NT. It is taught by an amazing special ed teacher who specializes in autism children. She also has special social skill groups she runs outside the school district. The classroom and schedule is designed for ASD kids and there are special aids and an environment that is built for pull outs.

I would find out what kind of resources your school district has and figure out if they are worth the dx. If they aren't don't do it. If she does will in regular class, awesome. If she struggles, then you can regroup and get the dx and the IEP. The issue is that can take months and months and if there was a better placement for her mid school year there might not be a slot.

You know her sensory needs and social skill weakness best, so you will be the best person to know if she has a strong chance to flourish in kinder, probably better than the school. I would also ask your OT and play therapist, they will have good grasp on her skills and if she is ready for a regular classroom. I would try to meet the teacher as soon as possible and also send her to first day with a letter explaining her to the teacher, strengths and delays. Explain any sensor issues and any quirks they may see and give them tips on how best to address them. I also thinks it make the teacher know that you are an involved and interested parent.

I'd say this: we went through both kindergarten and 1st grade without a diagnosis, and it was a disaster - kindergarten much more so, because bizarrely the social expectations are much higher in kindergarten than in 1st grade.

In short, DS spent almost all of kindergarten in the time-out chair, with a worried teacher running to me on the playground after school nearly every day to describe a new behavior she couldn't figure out how to handle (she was actually a very good teacher, just a very bad fit for DS, even though she really did try - and I can't blame her for not doing well when none of us had any idea what was going on.)

The only thing that saved DS from spending 1st grade in the time-out chair was...well, there were 2 things - first, the school at least learned from his experience in kindergarten and put him with a significantly more structured teacher, and second, sadly, a new kid came into the school with worse behavioral issues than DS, and took the focus off him.

If we'd had the frame of AS to use, he'd have been given tools to deal with being different - and I also think it's possible that everyone (especially us, but we didn't know better at the time) would have taken a much less punitive approach. He really needed social skills training and pragmatic speech therapy (he didn't really get it until 4th grade but that's another story) and would have had a much easier time if his sensory behaviors were diagnosed and managed by the school's OT.

As you might guess, I am now pro-label, but only as far as the label gets you something. You're right, it's just a matter of ticking off boxes to slot your child into one space vs another, but the practical application is what you want to worry about.

Are you in the US? I would go to the school and request (in writing) a formal assessment. (See Wrightslaw for how to do it.) They may or may not give her a label, but they might see the need for the various supports and therapies in either case; I think you'll have a better shot at that than getting a fly-by diagnosis from a doctor you don't work with regularly.

When I was in kindergarten (2003-04, already?!) I was put into a regular AM half-day class, but with an aide always helping me out on my work and if I got stressed out. This pretty much was the way I went through elementary school - sometimes there was a pull out social skills class in the middle of the day in the upper elementary grades, but I usually had an aide with me throughout the day from 9-3. I'd also have aides in my specialist classes - they would help me out if I struggled in PE or had a bad day, helped me in the computer lab, etc. I don't remember getting time out chair discipline - I was OK.

Has she attended preschool? If so, how did that go?

A lot will depend on the school and teacher. DS's kindergarten teacher was very cheerful and sweet, and I don't think she had very high expectations regarding behavior for any of the students. He managed mostly fine without a diagnosis. My biggest worries were safety-related; I kept him home from field trips because he approached strangers and didn't pay attention to his surroundings (for example whether he was still with his group or not). He also ran outside one day when he was left unattended in a hallway by a substitute teacher.