Out of Pocket Testing for 5 year old

[Disneyfan1977]

Hello All
I'm frustrated and not sure where to turn. Everyone on here is always so helpful so I will start with my fellow DISers. My 5 year old just got his first report card from school. As I suspected, he didn't do very well. To give you all a little background. He turned 5 last St. Patty's day. He was a late talker and has a major speech articulation delay. He has been in speech therapy since he was 3. As far as learning basic numbers and letters, he doesn't retain anything that is taught to him. The children in his class are starting to read, he can only identify a few letters and sounds. My motherly instinct has been telling me that something is just not quite right. His preschool teachers were telling me that he was fine and that boys just learn slower than girls.

I talked to his doctor about my concerns and she agreed that we should do some sort of testing for him because he just isn't learning simple things that are age approriate. His motor skills are fine. He has perfect behavior in school but he is off the wall at times for me. He has major clothing issues. He will only wear a select few pairs of pants and tops. No buttons no pockets. I have to retie his sneakers repeatedly in the morning until the feel "right".

So back to my title, as of now the school district hasn't agreed to any testing for my son.

I don't want to wait any longer. I talked to them back in March about what the pediatrician had suggested but was told to wait. Has anyone ever done this before or have any suggestions as to where to go next and/or how much this usually costs?

 

[Tandyc]

I am of no help with cost, but I feel very strongly about your motherly instinct. Listen to your gut and do not give up. You are his only true advocate. The sooner he gets help the better.

I commend you for asking to get him the help he needs and want to add my support to a difficult situation. Moms know what thier children need and should be respected for it. Call your pediatrician and ask about testing. They should be able to tell you where it is available, maybe even if you can insist the school do it.

Good luck and know we are here to support you!

Tandyc

 

[Conway733]

I would contact your medical insurance and see where to go for some sort of testing. I'm in PA and here schools would be of assistance too...it sounds as though yours isn't!

 

[Disneyfan1977]

I would contact your medical insurance and see where to go for some sort of testing. I'm in PA and here schools would be of assistance too...it sounds as though yours isn't!

Our district isn't assisting us as of yet. I've have written letters and talked to the principal via email when I registered him about my concerns. I had requested a teacher who I know to be very good with children like my son. I was turned down for that request too. I think his teacher is good but I think the class may be too large for his needs.

The teacher commented to me that he rarely participates in classroom conversation. I have to get frustrated at that because of the fact that he is very hard to understand at times. Shouldn't she get that??? My son will only engage in real conversations with people he knows will understand him.

We are going in tomorrow for flu shots so if we get to actually see the doctor I will try to discuss this with her again.

 

[sweet maxine]

I have one who has the same issues. I haven't had testing because I'm not really sure at this point what testing results would tell me. It sounds very similar to either Sensory Integration Disorder or Asperger's syndrome. You might google these two things and find out a bit about them to see if this sounds like what you're dealing with.

Sorry I have no idea how much testing could be. We did look into it once, and a guestimate would be ~$1200 or so. Hope that helps, and here's a for you, as I know how difficult some days can be.

I should add this is a big reason why I homeschool. I'm tired of dealing with things like that from the school district when I'm paying quite a pretty penny in taxes.

 

[Disneyfan1977]

I have one who has the same issues. I haven't had testing because I'm not really sure at this point what testing results would tell me. It sounds very similar to either Sensory Integration Disorder or Asperger's syndrome. You might google these two things and find out a bit about them to see if this sounds like what you're dealing with.

Sorry I have no idea how much testing could be. We did look into it once, and a guestimate would be ~$1200 or so. Hope that helps, and here's a for you, as I know how difficult some days can be.

I should add this is a big reason why I homeschool. I'm tired of dealing with things like that from the school district when I'm paying quite a pretty penny in taxes.

That is great info. I just googled it but it's a lot to read and I am at work. I will be doing my research when I get home tonite. I appreciate all of your input.

 

[lindsmom]

I did a quick google of Delaware Dept of Ed Special needs (assuming your son goes to school in Delaware). What I found interesting is 2.2 below - "a parent ... may initiate a request for an inital evaluation..." and 2.3 - "within 45 school days... the initial evaluation shall be conducted..."

So review the emails etc that you've sent the principal. If you have specifically asked for testing, your state requires that they have done it within 45 school days of that date. If you haven't specifically asked yet, send one more letter specifying (perhaps with accompanying dr. note) that you want your son tested for a possible disability.

Most states are required by law to provide testing at no or limited expense to the parent. It's a federal thing, I believe.

Good Luck! Here's the stuff I found:

2.1 Initial Evaluations General: Each public agency shall conduct a full and individual initial evaluation in accordance with 5.0 and 6.0 before the initial provision of special education and related services to a child with a disability under these regulations. The initial evaluation shall be completed in a manner which precludes undue delay in the evaluation of students.

2.2 Request for initial evaluation: Consistent with the consent requirements in 1.0, either a parent of a child or a public agency may initiate a request for an initial evaluation to determine if the child is a child with a disability.

2.3 Procedures for initial evaluation: Within forty-five (45)school days or ninety (90) calendar days, whichever is less, of receiving written parental consent, the initial evaluation shall be conducted; and the child’s eligibility for special education and related services must be determined at a meeting convened for that purpose.

2.3.1 The initial evaluation shall consist of procedures to determine if the child is a child with a disability as defined in 14 DE Admin. Code 922.3.0; and to determine the educational needs of the child.

2.4 Exception: The time frame described in 2.3 of this section does not apply to a public agency if the parent of a child repeatedly fails or refuses to produce the child for the evaluation; or a child enrolls in a school of another public agency after the relevant time frame in 2.3 has begun, and prior to a determination by the child's previous public agency as to whether the child is a child with a disability.

2.4.1 The exception in 2.4 applies only if the subsequent public agency is making sufficient progress to ensure a prompt completion of the evaluation, and the parent and subsequent public agency agree to a specific time when the evaluation will be completed.

2.5 Screening for instructional purposes is not evaluation: The screening of a student by a teacher or specialist to determine appropriate instructional strategies for curriculum implementation shall not be considered to be an evaluation for eligibility for special education and related services.

(Authority: 20 U.S.C. 1414(a); 14 Del.C. §3110)
The link where I found this is:

http://regulations.delaware.gov/AdminCode/title14/900/925.shtml#TopOfPage

 

[ajk912]

Does your pediatrician have any idea? Back when we were dealing with this the pediatrician recommended us/referred us to a developmental pediatrician (this may be a local term, but a pediatrician that specializes in development) and she had a team of interns (think Grey's Anatomy ) and they ran a few tests in the office that day to see where my daughter was on track. We ended up at a neurologist after that. Do you have anything like that where you are?

As for cost, I dunno, specialists are covered for $40 for us under my medical plan.

 

[sweet maxine]

Sorry, I somehow missed the part about the speech delays. I guess I skimmed the post too quickly.

I would definitely look into the evaluation from the school if it could be done for free, and your insurance doesn't cover the testing/evaluation. Hope something works out for you and your sweet child. It's heartbreaking to see them struggling like this and not knowing what to do about it.

 

[gillenkl]

I live in Delaware and have a special needs child - email me and I will try and give you some helps regarding school district, etc....

 

[melancholywings]

You shouldn't have to pay out of pocket. The school should test him if you request it, and as a student I believe he'll get in faster. We did DD and all the things they do - speech and physical activities are rather interesting. After the test you should get a report, and maybe a phone call with the results. If they find that he qualifies they'll put him in their programs there. DD didn't qualify for her speech, but they said they'd keep an eye on it. She's now in second grade and their doing another evaluation on the teachers request as she's still having some problems.

 

[Juliee8]

I have a son, who is now 8, but sounds exactly like yours when he was that age. I had him in speech therapy as well since he was 3 years old. Please pm me with your email address and I can email you with the specifics pf what has helped my son, and also regarding testing for your son.

 

[Poohs#1fan]

I was a special ed teacher in Delaware until last year. I just PMed you.

 

[StillPinballFamily]

Good luck! (I grew up in Delaware - first staters have to stick together!)

You will undoubtedly get lots of personalized great and helpful advice from the PPs who will be PMing you.

Welcome to the wonderful world of "schools not paying for tests, etc. because they are 'medical and your health insurance should be paying..' and health insurance not paying for tests, etc. because they are 'educational and your school district should be paying'..." - argghhhhh! To be blunt, the system stinks and really pits the two against each other with the family and the child (especially) stuck in the middle.

You will be in a much better place when you've got a *real* medical diagnosis from a developmental pediatrician and a "core evaluation" requested asap from your local school district - (funny - the results won't match!!!), but you'll have much more knowledge under your belt and be able to advocate for your child's needs.

Based upon my experience, it sounds like you've got a significant road ahead, but you'll also find many sources of advice and assistance. Best wishes to you, your son, and your family - if you think I'd be helpful at all, please do feel free to PM me any time.

 

[billwendy]

Hi,

I dont live in DE, but I do work at duPont Hospital for Children. I would get him set up for an Occupational Therapy evaluation, specifically to look at sensory integration (since his motor skills are fine)....you could set up an appointment for that type of evaluation with a dr's Rx - many insurances cover the eval (although not as many cover therapy) - also, you said he has been in Speech tx, maybe do they have an OT there who could evaluate him? THat way he would be comfortable in the setting. I am an OT, so if you have any questions please, feel free to ask!

Also, does your speech therapist have any input to why he is having difficulty in school? Is there an auditory processing issue going on (maybe thats why he doesnt participate in classroom stuff??).

you may have to push the school a little, but you are at the point where you dont want him to start feeling negative towards school - school is a long haul for a kiddo!!Maybe they could do some educational testing and have an OT look at him as well????

I know this has to be hard for you - poor little guy!

Wendy

 

[jeepgirl30]

You have gotten some great responses already. I don't have much to add other than support. I wish tons of luck.

We've been fortunate, our school has gone above and beyond with testing. My DD is "young" for her grade at her school. She has been struggling since day 1. They've tested for all kinds of things and all they find is a slight memory issue. My DD sounds very different from your situation though.

Don't give up, keep pushing the school.

 

[Disneyfan1977]

ok..let me start by saying that you guys are the best. I knew coming to the message boards would be the way to go.

You have all given me a ton of info. I like the idea of taking him to AI Dupont hospital for testing. My oldest daughter was there a lot when she was younger for various illnesses and I am very comfortable going there and I love how great they are with the kids there.

We are going to the Dr tomorrow for flu shots and I am going to call ahead and see if we can see a doctor and get a new note about the testing.

My "conference" with my sons teacher isn't for two more weeks and thats when she said we would talk again. I hate to wait that long but thats when I was scheduled.

Thanks for the great info

 

[tink2dw]

It is better to get the Testing done thru the MEDICAL system Not the school!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Diagnoses change over time and the Medical will willing help.

School sometime do not even use medical people to do the testing and the result right or wrong will be there for 12 grades No matter what you do or say!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

If you have the Medical community do the testing, the school never has to know the results and can't label your child as throw a way!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

You can bring in prescriptions as to how the School Must teach your child!!

Not have the teacher tell your child they are just too stupid to learn and never help them, True story, and the child believed it for 6 years!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I know it costs more. But If I could have know how the school and the teachers would treat my child(tears) I would have sold everything! Gone hungry! Just to change everything, and Made it Better!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

[StillPinballFamily]

We are going to the Dr tomorrow for flu shots and I am going to call ahead and see if we can see a doctor and get a new note about the testing.

My "conference" with my sons teacher isn't for two more weeks and thats when she said we would talk again. I hate to wait that long but thats when I was scheduled.

Tomorrow, ask your doctor for a referral to a developmental pediatrician - or developmental clinic - or neuropsychologist. IMHO, with the info you've provided in your posts, you need someone with these more expert skills. If they can't provide you with names, ask them who could. You can't be helped by more passivity or stalling...

Today, skip over the teacher and principals. You need to be in communication (in writing - everything in writing!) ASAP with the Director of Special Education for your school district. Your dated and written request for a "core evaluation" for your son will set off a (federal and state) legally enforced chain of events that the school can no longer continue to stall and delay you for testing. (The PP who posted the state regs did you a BIG favor!!!) The core evaluation - sometimes called something slightly different - will test for speech disabilities, learning disabilities, sensory disabilities, OT disabilities, etc.

Your son will cost the school district "extra" money to educate and they will never be in a rush to do anything - test, provide services, etc. and you'll be amazed at how *great* your son is doing in school according to their tests (!) But, do them anyway. You'll be doing lots of homework over the coming weeks - Google will be your new best friend! - as you learn the laws that protect you and your son as you move through this evaluation/testing process. The teacher and principal will be members of your son's team (as will you) if it is determined he needs special education services - seems that speech and OT at a minimum - and they may be your ally or maybe not. You can never count on that - they need their jobs and won't risk them to recommend services for your child that the school district will have to pay for. This is where the medical testing is so vital - it might seem redundant, but you really do need to pursue the medical-based testing, as well as the educational/school-based testing, too.

Last piece of advice - find out if your school district has a special education parents advisory council (PAC). If so, get a call into them. Some are very helpful - others, not so much. But, find out. Here's a link to an awesome one in MA that will be a great deal of help, despite being out of state:

http://www.concordspedpac.org/

 

[summerrluvv]

It's my understanding the school will test him for delays and receive services accordingly, and is required to test him at your request, but they will not diagnosis your child. A medical doctor provides a diagnosis. My son was in EI, never was given a diagnosis with all of his delays. An MD did diagnose him with ADHD, but that wasn't until several years after he was in EI. I never felt I needed a diagnosis for his other "issues" since my district was so great from the beginning with providing services based on his delays from their testing.

Fast forward several years, the school was mentioning PDD again (which has been mentioned since age 2 and I've always known he has it), but they don't test for that. I had to wait almost a year for an appt. with an MD that takes our insurance and he was finally diagnosed with PDD-NOS in September at age 9. I figure that an actual diagnosis will help him in the long run through middle school, etc. if they decide to switch around with his services, etc.

Sorry to ramble!! Good luck!!