Where do I start getting help for my son?

[jellyben]

A friend recently suggested I have my son evaluated by an OT. He has been struggling in school academically and socially, is very impulsive and inattentive, and since he was 3 the idea of ADHD has been thrown around. We even tried meds last year but they made no difference in his behavior or performance. This friend suggested that he could have something other than ADHD and that a complete workup by an OT might be a good place to start. I had never considered this and wonder what sort of stuff they might do? ANy OT's out there!?

When I asked her, his teacher said we should take him to a professional, but the school will not do any testing. She said one-on-one he does OK so he would do fine on their testing. But if he had ADHD would he still do fine one-on-one? I have been like an ostrich with my head in the sand, I don't even know where to start, so we do nothing. But I worry about his self-esteem and school performance. We did take him to a psychologist 2 years ago(who made the ADHD diagnosis) but he did not look at any other possible problems(we went in sayng we were there for ADHD testing so that is what he focused on).

For parents who have dealt with similar issues, should we start with a psychologist, or pursue this OT option? Any advice?! Thanks.

[tbb113]

Karen - I would start with your peditrician. Let them give you suggestions/referrals.

[helios7]

I'm not an OT, however I am a Special Education teacher working in an special education school. We have a Speech Therapist, OT, psychologist as part of our teaching team.

First of all, is this something you're looking to pay privately, or are you planning to go down the state funding route? I'm not sure where one would begin to find an OT, I know here in NYC you can find private OT gyms that provide service outside of a school setting. Perhaps checking your yellow pages might turn such a place up and they might begin to guide you on the path to obtaining your child services. Another path would be to consult a pyschologist about an evaluation, but each state has their own path to special education so I just don't know your state's regulations.

Is there a special education teacher at your son's school that you could talk to? They might be an easy first step, and should be able to direct you. Alternatively a meeting with the principal? Here in NYC, you could call the Committee for Special Education, and they would be able to direct you down the path of obtaining OT services.

I don't feel like I helped you much, hopefully someone else will be able to shed more light on the way it works in Washington. But I've been very impressed with how effective a good OT can be with teaching a child to recognize and manage their impulses. Its truly amazing. Good luck finding such a person!

[newtricks]

We had our son evaluated between Kindergarten and First Grade. The Kindergarten teacher raised some issues that the pediatrician said sounded like attention issues.

We went through a private testing center at our local hospital recommended by the pediatrician. They did a comprehensive battery of tests - psychological, educational, physical, interviewed us, etc. by a variety of different professionals including an ot. And yes, he was on the spectrum for add but also had a phonological processing deficit (sort of pre-dyslexia? - Heather would have a better definition of that). Turns out the "dyslexia" was causing him stress which was exacerbating the add behaviors. We had him classified for the phonological stuff and he got reading help and ot through the school. He's in 2nd grade now and I can't begin to tell you the difference. His teacher called his progress a "miracle". I really could have cried.

So the point of my story is it's a good idea to do a full work-up rather than do it sort of "piece-meal" i.e., first the psychologist, then an ot person. Because even if your son has add there are often other learning disabilities or possibly psychological stressors (such as the low self-esteem you mentioned) that will affect his behavior.

I'm not sure if I answered your questions but feel free to pm me. This is very hard and you're NOT being an ostrich you're doing something. :)

[helios7]

Thanks for the clearer picture Barbara...


As I was writing I was thinking about how I (at this point in my fledgling special ed career) work with the children already identified and receiving services. I really wasn't sure how that process began, but you described it perfectly.

I will file that knowledge away for future reference.... :) And it does sound like "the system" has helped your son. The earliest of interventions really can make a difference....

[DmOrtega]

I can't offer any advice on this subject. I just wanted to say "Good for you for taking the inititive and looking for help for your son." Early intervention can help with many issues for all of us, especially our children.

[Beth]

My first thought would have been that the school should either have the resources to help you get started or a list of places to go for addditional help. I have a neighbor who is an OT. I will ask her what she would suggest.

[ChristineVA]

We had our son evaluated between Kindergarten and First Grade. The Kindergarten teacher raised some issues that the pediatrician said sounded like attention issues.

We went through a private testing center at our local hospital recommended by the pediatrician. They did a comprehensive battery of tests - psychological, educational, physical, interviewed us, etc. by a variety of different professionals including an ot. And yes, he was on the spectrum for add but also had a phonological processing deficit (sort of pre-dyslexia? - Heather would have a better definition of that). Turns out the "dyslexia" was causing him stress which was exacerbating the add behaviors. We had him classified for the phonological stuff and he got reading help and ot through the school. He's in 2nd grade now and I can't begin to tell you the difference. His teacher called his progress a "miracle". I really could have cried.

So the point of my story is it's a good idea to do a full work-up rather than do it sort of "piece-meal" i.e., first the psychologist, then an ot person. Because even if your son has add there are often other learning disabilities or possibly psychological stressors (such as the low self-esteem you mentioned) that will affect his behavior.

I'm not sure if I answered your questions but feel free to pm me. This is very hard and you're NOT being an ostrich you're doing something. :)

I agree with this approach.

My son was referred by his pediatrian to Children's Hospital. Here in D.C., they actually have a ADHD/Learning Disorders "clinic." When you go there, you go for the entire day (or more) and your child will be evaluated by a neurologist, psychiatrist, and a team of psychologists. They are given several different types of tests to determine if there are one or several learning disabilities. After that, you meet with them and the "team" discusses what the best form of treatment would be. I find this approach is best because there are so many things that mimic ADHD. I really think that going to a pyschologist alone is a waste of time. There is no "test" for ADHD. But there are many tests (physical and psychological) that give them a good picture.

[cchhbb]

I would follow up with the school. At least here in Ga, if you as a parent request testing, the school district must provide it. My son was tested this winter for a wide range of things and we determined that he had a speech issue. It was all done within the school district since he was over 3 and he is receiving speech through the district. I think it is a federal mandate that the school district provide this testing. My son's testing was through the special education department. I was surprised that the school district did this testing for children with above average cognitive development as poor cognitive skills was what I always thought of was what special education was.

[jellyben]

Thanks for all the advice/info. As far as the school testing him, his teacher said she would discuss having him tested with the special ed. teacher, but that it coud be weeks/months before it could be done if they decided he needed it. Big If-she didn't seem to think it would happen although she does think we should follow up privately. I am willing to go the private route because I have spent enough time wondering what is going on.

As far as an OT, we have a good recommendation from my friend, but don't know if this is too specific, not really looking at all the possibles issues that it could be. I don't know the go-to place in this area for comprehensive testing, I should ask the special ed teacher.

Thanks again. My head is spinning...

[blazedog]

I can't offer specific advice but having read about provision of services for special needs, I do think that the squeaky wheel gets the grease.

The school district doesn't want to spend money and I am almost certain that they are required to fulfill the special needs of each child. They are counting on the inertia of parents.

I would research what your rights are under Washington law and then DEMAND that the school fulfill them in a timely and satisfactory basis -- months for a possible test is not acceptable -- or at least wouldn't be for me.

I realize at this point you are feeling overwhelmed because you are not even sure what you should be demanding -- an immediate appointment with the Special Ed teacher and your pediatrician would at least help you get started.

I would assume Seattle has some kind of comprehensive testing center analogous to that mentioned by a previous poster. I would think that it is too early to seek specialized help and would certainly opt for a diagnostic program that covered the bases as a specialist might be more likely to be biased towards their specialty rather than taking a more holistic view.

[newtricks]

I can't offer specific advice but having read about provision of services for special needs, I do think that the squeaky wheel gets the grease.

The school district doesn't want to spend money and I am almost certain that they are required to fulfill the special needs of each child. They are counting on the inertia of parents.

I would research what your rights are under Washington law and then DEMAND that the school fulfill them in a timely and satisfactory basis -- months for a possible test is not acceptable -- or at least wouldn't be for me.


I just want to bring up one thing here - while Blazedog is entirely correct about your rights - be very careful about "DEMANDING" things. There is a time and place to burn down the doors to advocate for your child, but you're not really there yet. And I found the "catch more flies with honey" approach more successful anyway. Unfortunately, there are some real-world issues to address , especially when you're looking at a possible ADD diagnosis. Like, do you *want* ADD on your child's records, as part of his iep, etc. Or do you want to handle that privately and avoid the stigma (because unfortunately, there is stigma). And the accomodations that the schools make for ADD kids can also set them apart and make them feel different. So you might prefer to address his add issues with some ot, behavioral therapy, and perhaps the correct meds privately rather than throught the schools.

When you have a good comprehensive work-up on your child, you can go to Special Services and say "here's where his deficits are, what can you do for me?' I just don't know that many parents who have felt satisfied with the testing provided by the schools.

Private testing is quite expensive -and Jellyben unfortunately it's in very high demand so you will probably have to wait a while - but for my child it was the best way to go.

Good luck :)

[blazedog]

To clarify, I think there is a huge difference between being assertive - which is what I meant by demanding one's rights.

Of course, one doesn't go in immediately shrieking like a banshee.

On the other hand, in any negotiation (and this is one), one should go in KNOWING what one's rights are and being prepared to firmly and assertively enforce this -- my definition of demanding something although my choice of verb unfortunately does come with the aura of histrionics -- which I absolutely agree need to be avoided.

To me, this is a business procedure -- the school district is supposed to be providing certain services - you are entitled to demand that those services be provided -- albeit of course in a manner which is most suited to getting your end result -- proper diagnosis and treatment for your child.

[jellyben]

Blaze, I get what you are saying. In the 3 years he has been in this school district, I have not gotten a clear answer from the school as to what our rights are. And that is partly my fault-I haven't looked into it extensively, and I am reluctant to make waves with his teacher/principal.

Barbara, I too have concerns about having anything documented on his permanent record. At this point I just want to know what we are dealing with. We tried ADHD medication and it made no difference. I don't know if it was just the wrong medication for him, or if we are dealing with something else. DH thinks he will grow out of it. His answer is to hold him back a year(he is an August bday so very young), but that would be devastating to DS. ANd would he suddenly be able to focus in class and get along with other kids? I dunno.

[newtricks]

On the other hand, in any negotiation (and this is one), one should go in KNOWING what one's rights are and being prepared to firmly and assertively enforce this -- my definition of demanding something although my choice of verb unfortunately does come with the aura of histrionics -- which I absolutely agree need to be avoided.

To me, this is a business procedure -- the school district is supposed to be providing certain services - you are entitled to demand that those services be provided -- albeit of course in a manner which is most suited to getting your end result -- proper diagnosis and treatment for your child.

Your choice of verb and the All-caps ;)

My point is that this isn't really a negotiation yet. It becomes a negotiation when you know what services you need. Which you don't know until you've had testing. And the schools have a million legal ways to avoid doing the testing themselves. Even if they do test, they are not required to do a comprehensive battery of tests so might miss something.

Trust me, I've been through it and observed lots of people going through it. Having test results in hand puts you in a much more powerful position in this negotiation.

[Chefzhat]

Somewhere in here I missed how old your kiddo is???

I would get his eyes, visual tracking, and hearing checked too.

Good luck getting all the info you'll need from the school district - I had to swim through shark infested waters to get the services that Rob needed - if you don't ask the "right" question you don't get the answers you need. Sigh.

Private is the way to go if you can afford it, its what we ended up doing.

Debie

[blazedog]

[QUOTE=jellyben]Blaze, I get what you are saying. In the 3 years he has been in this school district, I have not gotten a clear answer from the school as to what our rights are. And that is partly my fault-I haven't looked into it extensively, and I am reluctant to make waves with his teacher/principal.

QUOTE]

Per my earlier post, providing this level of care is expensive and I do think many districts do a dance to avoid having to spend the money.

That said (not meant as a judgment), you should know what you are entitled to before approaching the school. You don't even have to show your cards -- as a matter of fact I wouldn't necessarily because you can then get a sense of whether they are acting in good faith by dealing with you in a straightforward manner.

In a negotiation, I don't believe in being dumb but I do often hold my knowledge close to my chest to scope out the other side.

And to the other poster, my use of DEMANDING is caps was deliberate because I don't think having to wait "months" is acceptable but perhaps I should have more properly used ASSERTING one's rights.

[newtricks]

[QUOTE=blazedogPer my earlier post, providing this level of care is expensive and I do think many districts do a dance to avoid having to spend the money.

That said (not meant as a judgment), you should know what you are entitled to before approaching the school. You don't even have to show your cards -- as a matter of fact I wouldn't necessarily because you can then get a sense of whether they are acting in good faith by dealing with you in a straightforward manner.

In a negotiation, I don't believe in being dumb but I do often hold my knowledge close to my chest to scope out the other side.
[/QUOTE]

I'm curious Blaze- what is it that you think Jellyben's trying to get? What is she negotiating for ?

[blazedog]

I'm curious Blaze- what is it that you think Jellyben's trying to get? What is she negotiating for ?

She is trying to get the best possible services for her son. I am assuming that she wants the maximum services that she is entitled to through government funding because private services are expensive.

In school districts with which I am familiar this can include private schools if the public schools cannot provide what is necessary.

I am certainly not advising an immediate escalation but, if it were me, I would research to find out what I wanted and what I was entitled to and then attempt to get that.

Of course, I would also follow a parallel course of talking with my pediatrician to get recommendations for medical evaluation that might be covered by health insurance.

[newtricks]

She is trying to get the best possible services for her son. I am assuming that she wants the maximum services that she is entitled to through government funding because private services are expensive.

In school districts with which I am familiar this can include private schools if the public schools cannot provide what is necessary.


That's what I thought you were going to say, which is why I asked you.

She doesn't know what services she needs until he gets tested. That's what I've said a few times. That's a major step. You are talking about private school for a kid who hasn't been diagnosed with anything as far as the schools are concerned. They'd laugh her out of the room. Real World.

[blazedog]

That's what I thought you were going to say, which is why I asked you.

She doesn't know what services she needs until he gets tested. That's what I've said a few times. That's a major step. You are talking about private school for a kid who hasn't been diagnosed with anything as far as the schools are concerned. They'd laugh her out of the room. Real World.

This is getting wildly off topic.

Please read what I said which was that she should figure out what she wants and needs and not necessarily reveal that. Knowledge is key in any negotiation -- if you don't know what you want, how can you expect to get it.

I added the private school only to point out that this kind of stuff is potentially expensive for school districts which is why they are reluctant to make it easy -- private school is just the most expensive end of the continuum. The school district is not necessarily working in one's child's best interest -- but of course I would never reveal that thought or suspicion -- I would just keep it in mind as I dealt with people so that I wasn't taking what they were saying or recommending at face value.

I also recommended checking with her pediatrician to find out parallel services that might be available and that would also aid her in figuring out what she should be "DEMANDING" :D from her school district.

Anyway, that's how I would approach a situation like this one.

[jellyben]

I emailed the teacher to ask where we were in terms of my request(to have him evaluated). SHe said that she requested a meeting with the Guidance Team, but since they are so busy and meet just once a week it probably won't be until early May. Of course, then we are getting close to the end of the school year.

To complicate matters, he made it into an alternative Science and Tech program in the school district(this is by lottery, not academic-based). From what I have heard it is very demanding academically, which could sink him, but is also very hands-on, lots of working in small groups with other kids, which he does really well with. And he has a real passion for science. He could really thrive in the non-traditional setting, or he could become overwhelmed if it is too demanding.

[ajowen]

Y'all may find this link helpful. It includes information about what different labels might mean, what you as a parent may need to know to advocate for your child (written from the federal perspective, so it applies in any state) and what research is being done on different disorders.

http://www.nichcy.org/index.html

Amanda

Edited to add: The parent resources are under 'publications'. One thing to know is if you request testing (in writing) they have to test your child within a reasonable time frame. This varies from state to state, but it doesn't have anything to do with how often the teams meet. It has to do with a state mandated time frame - usually 40 working days or 5 weeks or something like that. DO make sure he gets tested before the end of this school year though - the clock sometimes starts over each year.

[Kristilyn1]

[QUOTE=newtricks]Your choice of verb and the All-caps ;)

And the schools have a million legal ways to avoid doing the testing themselves. Even if they do test, they are not required to do a comprehensive battery of tests so might miss something.
QUOTE]

Okay, first off--I am not some apologist for the school system but I've heard this opinion stated over and over ad nauseum in the real world and while there probably ARE some school districts that might avoid spending the money---it's not like the school teachers, therapists, etc. are spending money out of pocket--the vast majority DO want to help. BUT, and this is a big but---the deficits or problems experienced by the child have to be hurting him ACADEMICALLY or hindering his education in order to be a problem that has to be addressed by the school. So the first question I would ask is: what are his grades like? My son has an ADD diagnosis that is completely unknown to the school (we opted not to have it on his record unless we need it to get something we need) and he has a diagnosis of a auditory processing delay (I urge you to do some internet searching on this, we would never have even considered this testing until I totally recognized my son in the symptoms, which incidentally are identical in MANY ways to ADD). Anyway, I digress--my point is that my son was getting adequate grades, but WE knew he is smarter and capable of more but it's pretty unreasonable to expect the school to spend a bunch of money to test a child that is not a behavior problem and gets C's in school. This may or may not apply to your child, as I don't think you indicated what his grades/performance are like--but I wanted to put it out there for the people who feel that schools in general just like to avoid testing kids. I think the reverse is true--I think often times, high achieving parents with bratty kids expect the school to pay out of pocket for all kinds of tests for things that they should be doing themselves--and no, I don't think that applies to your son.

Yes, I work in special education but I do sympathize with parents and the labyrinth of information you need to sort through to figure out how best to help your child. I will say that the parents I work with who pay for private testing typically get WAY more information and a much clearer picture of what needs to be done vs. just going through the school.

Kristi

[jellyben]

Y'all may find this link helpful. It includes information about what different labels might mean, what you as a parent may need to know to advocate for your child (written from the federal perspective, so it applies in any state) and what research is being done on different disorders.

http://www.nichcy.org/index.html

Amanda

Edited to add: The parent resources are under 'publications'. One thing to know is if you request testing (in writing) they have to test your child within a reasonable time frame. This varies from state to state, but it doesn't have anything to do with how often the teams meet. It has to do with a state mandated time frame - usually 40 working days or 5 weeks or something like that. DO make sure he gets tested before the end of this school year though - the clock sometimes starts over each year.

Amanda, thanks for the link. There is quite a bit of info there!

[eas11]

Please consider talking to your son's doctor about a referral for a neuropsych exam. This exam will lead to other recommendations (such as OT), IF necessary. The testing is expensive...so you do want to see if you can get a referral and have it billed to insurance. In MA, a school CORE evaluation is completed by the school team. If a parent is unsatisfied with the results, s/he may request an independent eval by a neuropsychologist. Although most school systems request it to be billed to parents' insurance- they are obligated to provide if insurance does not.
HERE (http://www.childrensneuropsych.com/neuropsycheval.asp) is a good description of what a neuropsych exam entails and expected outcomes.
A neuropsych exam, which will assess his brain function as it relates to learning, is not to be confused with a neurological exam, which examines the brain as an organ and looks for pathology.


I have had many students and adult clients that we referred for neuropsych exams. A good exam is invaluable in terms of clarity and recommendations to families, school personnel, clinicians and anyone else working with a child.

Good luck and feel free to PM if you need more info.

[newtricks]

Kristilyn-
I agree with every word you said actually. And you laid out why the testing kids get in school can be inadequate much better than I did. I'm not knocking the school system, I work very closely with ours and have been thrilled with the services my son received. His reading teacher and ot get a big tin of Anna's Almond Roca every year :D .


Eas11 - a neuropsychologist was the "team leader" of our son's testing. Yes, yes, yes.

Jelly - your pm box is full :)

[newtricks]

This is getting wildly off topic.


Not really. I just disagree with you. We're still talking about the best way for J to start getting help for her son. If this were a hypothetical situation, you would state your opinion, I would state mine and go our merry ways. But since this is a real parent and a real child I'm pushing back on your advice which in my opinion is wrong.

[helios7]

Amanda,

Great site. Lots of information, and a very clear progression of the steps to take as a parent. Cleared up my confusion! Thanks!

[jellyben]

[QUOTE=newtricks] So the first question I would ask is: what are his grades like? Kristi

His last report card was pretty dismal. Lots of 2's(meaning approaching the standard) which I think for almost through with 3rd grade is not very good. The classwork he brings home is also bad. I met with his teacher a few weeks ago about it and she said she can't tell if he does poorly because he isn't interested in the material and isn't trying, or if he doesn't get what is being asked of him. When he was 4 and 5 he wowed people with his math skills. This year he struggled through his addition math facts. And his lack of social skills and behavior issues is also reflected in his report card.

I get that they can't test every kid that is presented, but I don't get that 2 of his last 3 teachers at this school suggested I have him tested, yet the school won't do it. I am at the point where I will do it privately, but to spend thousands of dollars to do so will sink us!

Barbara, I cleaned out my mailbox!

[jellyben]

HERE (http://www.childrensneuropsych.com/neuropsycheval.asp) is a good description of what a neuropsych exam entails and expected outcomes.
A neuropsych exam, which will assess his brain function as it relates to learning, is not to be confused with a neurological exam, which examines the brain as an organ and looks for pathology.



Thank you for the link to that description! That sounds like what we need. I will start pursuing that, and also see what happens with the school.

[Chefzhat]

Karen, it shouldn't cost thousands - have your pediatrician refer him for a full neuro-psych exam. Unless you don't have insurance . . . then I guess it will cost a bunch. But really, isn't it worth it?

Rob's neuro-psych eval took a whole day and cost around $2800. Our insurance didn't cover the costs, but will cover whatever therapy is required.

Debie

[jellyben]

Karen, it shouldn't cost thousands - have your pediatrician refer him for a full neuro-psych exam. Unless you don't have insurance . . . then I guess it will cost a bunch. But really, isn't it worth it?

Rob's neuro-psych eval took a whole day and cost around $2800. Our insurance didn't cover the costs, but will cover whatever therapy is required.

Debie

We have military insurance, which can be pretty lousy. But you are correct, the info is priceless.