Help me figure out a plan (please!!!)

[TraceyS/FL]

I'm at a point where i need input from others that have BTDT. I need to start this off by saying that i'm currently in the process of what can be classified as an "ugly" divorce. This post, and others i have made will be read and used against me - they already have been. However, i need advice and you guys have lots of it - and maybe the STBXH & crew will see that i'm not nuts & do know what i'm talking about :D

Background on DD: She has Turners Syndrome. That in itself brings on a myriad of possible learning issues. Allow me to quote from the TS Family Guide:

However, researchers have learned that girls with TS are more likely than other children to have specific learning disabilities, especially in nonverbal areas(sometimes called nonverbal learning disabilities or NLD).

Commonly observed weaknesses include:

• difficulty imagining objects in relation to each other (visual-spatial processing; difficulty driving and poor sense of direction)

• trouble appreciating subtle social cues such as facial expressions (social cognition)

• problems with nonverbal problem-solving (math)

• clumsiness (psychomotor problems and poor manual dexterity).

These learning disabilities are common enough that some
specialists suggest that girls with TS be screened for them as early
as infancy;

She has evidence of most of these, and in addition she has some huge math learning issues. Again a TS related problem - there have been studies on TS GIrls and math. Now lets add in her struggles with reading - i'm 99% sure that she needs vision therapy. She exhibits about all of the symptoms at http://www.hslda.org/strugglinglearner/sn_visual.asp (it's a good summary of her). In addition, her father has dyslexia - which i know tends to run in families, he wasn't diagnosed till late in elementary school - so i'm guessing his problems actual are similar to hers. She also exhibits all of the Auditory symptoms listed at: http://www.hslda.org/strugglinglearner/sn_auditory.asp (gee, that is EXACTLY how she says magazine! LOL!!!)

She has had no formal diagnosis, and i have no idea at the moment if she has access to medical insurance. She has always been at home, she was held back a year for K and is in 3rd grade. We just started on 2nd grade Reading with BJU. Prior to finding BJU I had tried Abeka & OPGTR with her - she just really was NOT ready to learn. Her cognitive skills seems to be running 1-2 years behind her age. I've seen a HUGE explosion in her abilities in the last 2 months. I"ve had no reason to push her - having her be confident and actually learning was more important than keeping up with her age appropriate levels.

My STBXH has filed a motion to force the kids into public school. "They" feel that the public school is equipped to provide the services necessary for her to be up to speed. "They" also feel that any testing that needs to be done would happen immediately over the summer and she would start the school year in August with helps in place. OK THEN. I won't tell you what the person with the school did when i repeated that statement to them - i'm sure you can guess.

Personally, i know she needs full MEDICAL testing - not evals thru the school district. I feel they are NOT equipped to diagnosis and fully treat her issues. My vote is for a Developmental Ped appointment, Neuro Psych, Developmental Optometrist and then go from there. Here comes into play the fact that for the last 2 years she has not had health insurance - there is no way we could have afforded this path. Because of no knowing what insurance she would be on in the future - seeking a diagnosis out of pocket wasn't an option. She is already uninsurable in a variety of ways - no need to add to it you know?

From what i have been able to gather, the school would put her in an age appropriate classroom, then decide that she needs help. This process is taking about a YEAR, then the evals start. So basically, she would get no help in the classroom for 4th grade, 5th would be her last year there before middle - and she might not get any by then. Other than the "help" that her peers would give her - she is about a foot shorter than most of them, and struggles with social issues.

I have an alternate plan that should satisfy "their" issues with Homeschooling - but there is another factor in play here, and its not all about the HSing. I firmly believe that she is better off at home next year while we pursue the issues and develop a "treatment" plan - which also should allow her to catch up academically as she gets help with issues. Let's keep her a loving, caring, HAPPY, 9-10 year old - why devastate her in these other ways just to get back at me? (after a birthday party last weekend i know it would be devastating to her). We are scheduled for mediation on this issue on the 15th, and the judge said he wasn't going to hear the school motion until a month before school starts because he wants us to solve it as parents.

ANYWAY, if you have read this far - i am asking that you share what direction you would go with testing and appointments. I'd also welcome your BTDT stories (or links to threads sharing them) with the school and it's testing, and basically any thoughts you might have on the topic.


Please keep in mind that your audience is:

• myself and my lawyer.

• STBXH, my MIL (who has been opposed to HSing from the start, 6 years ago), and their lawyer - none of whom seem to grasp the process and really believe that the School District is the answer to it all.


Thanks for anything you can share....... (and I welcome PM's & emails too if you aren't comfy going public).

[LizzyBee]

A few off-the-cuff thoughts:

Would your daughter qualify for medicaid or your state health insurance program? If so, those programs do count as insurance irt health insurance portability. And even better, they tend to cover tests and therapies that many insurance companies won't cover.

Reversing the sounds and syllables in words is a motor planning issue that is separate from auditory processing disorder. Speech therapy could help with this; there is also an occupational therapy called Interactive Metronome that helps with motor planning.

If you can afford testing to pinpoint your dd's processing issues, there are some therapies that can be done completely or partially at home. Even without testing, you have a good handle on your dd's difficulties and could provide some therapies at home. Honestly, I don't regret having any of the testing we did for my dds, because it gave me confidence that I was on the right track; but it didn't provide much new information and it confirmed rather than changed our plans for remediation.

Our audiologist recommends Earobics rather than FastForWord because it's much cheaper and just as effective if done consistently. FFW costs $3200 and has mixed results; Earobics costs $60 per level and is done at home; if it doesn't work at least you haven't spent so much money. Another program you can do at home is Lindamood Bell Phonemic Sequencing (LiPS), which develops phonemic awareness and adds an oral-motor component to the usual sound-symbol association for beginning readers. Some developmental optometrists will give you a home vision therapy program and then you go in for periodic checkups to make sure your child is progressing appropriately. As I understand it, it's still expensive, but much less than doing all of the therapy at the opt's office. It sounds like your dd would benefit from OT for the psychomotor issues, but if you have a Wii Fit, that could be beneficial for her too. We got the Wii Fit while my dd was in OT, and we were surprised at how much they correlated with each other. Of course, OT was more fun because of all the cool equipment, but dd enjoys the Wii Fit too.

I agree with you that if your kids are enrolled in school, the testing and IEP process will drag out, because under the newest law change irt special ed, kids have to be failing before they are eligible for help - at least that's what my friends with kids in ps are telling me - and I can tell you they are very, very frustrated about this. OTOH, in NC, homeschoolers can request testing through the ps and there is no charge for this. The school has 90 days to do the testing and hold the IEP meeting after the parents submits the request in writing to the correct person. (The schools in NC won't actually provide services to homeschoolers, but they will sometimes provide consultation and help with curriculum choices if the testing merits this - that's the reason for the IEP.) You could check to see if you can go that route in FL. The testing will not include the medical component that is important when you have a child whose LDs are intertwined with medical issues, but it could still provide some valuable info.

Your stbxh and his lawyer might find it enlightening to know that in many cases, moms of special needs or LD kids had no intention of homeschooling, but began doing so after public schools failed their kids. Schools do not define a "fair, appropriate public education under the law" the same way that most parents do. I know someone whose son is severely dyslexic; she was told that the school could not help him. I have a good friend who was told her autistic son would never read; she taught him to read in 6 months of homeschooling.

[LisaTheresa]

We live in a affluent area and are in what is considered a good school district, but the schools do not remediate for learning disabilities. They accommodate. So, rather than helping your child to meet their full potential by finding ways that they can learn or using therapies to try to overcome lds, they simply lower the bar.

My stepdaughter has learning disabilities, has always had an IEP and is set to graduate next month. She has received mostly A's and B's with the occasional C until these last couple of years of high school when things got more difficult for her. She has received D's and F's on almost every midterm or final exam she's ever taken, but always walks away with a decent grade because the schools let her do "extra credit". She just took the SATs and she scored in the 1st percentile.

My nephew has many issues and the school simply does not want to recognize them. He has an IEP, but they continue to insist that he has met goals that clearly haven't been met. My sister is pretty much giving up on getting what she wants in his IEP because she has found that even if she gets it, the school does not follow through. They are only interested in covering themselves legally.

My son was in the early childhood program and he had speech therapy 2X/week and someone came out to his preschool 1X per week to help him out. The therapy was done in a group with other children who had totally different issues. It was in half hour sessions and the half hour began when the therapist came to pick the children up in the front office and ended when she brought them back. In between, there was the pledge of allegiance and announcements. I never felt he progressed with the therapy. I wonder why? The person who came out to help him with preschool was nice, but did nothing according to his preschool teacher.

As far as testing goes, my son scored in the 2nd percentile for his fine motor skills, but golly, the school therapist didn't think he really needed any help with them. She was sure they would just kick in eventually.

An acquaintance of mine has a husband who has worked in special ed for 20+ years. He is quitting this summer without another job lined up because he can no longer sleep at night. He has developed ulcers and is sick that he is no longer able to teach children, but must spend all his time jumping through hoops to cover the school legally.

And, yes, you are right. If you request testing now, it will probably take 6 months to get it and then it will be another 6 months before you review the results and come up with an IEP. Around here, they really try to drag it out at least one full school year.

What would I do? I would get a neuropsych evaluation done and see what your daughter's areas of strengths and weakness are. Hopefully, if you get someone who is good, they will recommend therapies you can pursue that will help your daughter. I know you want to continue homeschooling, and if you can do that, it will make a world of difference for your daughter. My son is at or above grade level in every area even though he has many of the same issues as my stepdaughter because I have been able to help him one-on-one and select programs that work for him.

Good luck!
Lisa

[Ginger]

As per what the others have said, the schools will not be able to immediately help your daughter. I have friends in ps who have children with LD's and the process is a nightmare. Then after the eval. and an IEP is in place...she will be in late 4th/5th grade, and will be having mulitiple teachers, who you will have to get to know each one and be on top of them constantly advocating for your daughter and that her needs are being met (which in all likelihood, will not be). Is your STBXH and his mother willing to help you out with that and be at the school's throats advocating for his daughter/her grandaughter?

Then on top of the adademic issues, you have the social issues that will come along with placing her in school. There is the bullying of anyone who is different, which will increase as she enters middle school.

Perhaps your stbxh and mil will foot the bill for a good private school in your area. Not that that will solve all those problems, but maybe paying for it will make them feel better.

You're not nuts...you DO know what you're talking about. When they have researched all the pros/cons of every educational avenue out there plus all her learning disabilities and treatment options, then perhaps they can have a say.

[Dobela]

I wrote a long reply a few days ago only for the server to be busy and it was lost. I will try to replicate it and make sense.

First, I used to teach special ed. It was the worst place for a kids to be in late elementary or early middle school. If she is mainstreamed, then she will be with peers until she is pulled out for specialized classes. Depending on the schedule of the special ed teacher, she may be pulled out of science for math, and then have to sit thru the regular math lesson anyway. Or she may have to leave reading for English instruction and so on. She may only be in classrooms for partial lessons. For a struggling learner, this just adds to the stress and increases difficulty tremendously.

The evaluations in public schools have a single purpose: to see if the child qualifies for services. They do not ever look for specific reasons for delays and difficulties. They just find out that there is one. I can't tell you how many children I helped test that had "boarderline IQ" (in the 80s) that were working at potential but that were very far behind peers that never received services or help frm the school. It didn't matter that they were falling further behind every day. They didn't qualify for any extra help because they were not average with learning disabilities and they weren't mentally retarded. They fell into that crack and were ignored.

I would call the school and see what the process is for a child coming in from homeschool. My son is showing severe learning disabilities. I called the school last year asking for help. The district I live in told me the following would happen (and yes, it is legal. I called HSLDA): First, he would be placed in a class with same age peers. He would have to work in that class without modifications for 1 year to prove tht he is incapable of work at that level. The first step in remediation would be to fail him in that grade at the end of the year. The next year if he is still having difficulty after 3 months, they would begin testing and hopefully he would be on an IEP by the end of that year. Basicly, he would have to experience 2 years of failure before he could get help. Since he is already receiving occupational therapy I asked about the school providing it. They said no. Until he exhibits another learning disability, they do not provide stand alone therapy. I would still have to do it after hours privately.

Next I called the district my parents live in because we want to move there. They do things slightly different. Since my son is homeschooled they would first give him an achievement test and then place him in the grade he scores lowest in. So, if he is working at a late K level reading and is 9 years old, he would be placed in Kindergarten. His age would not be taken into account. The rest is the same. He would have to be in that grade 1 year. If he can't pass without modifications he would be failed and testing might begin 3 months later. Now, I don't know about you, but the thought of my 9 yr old possibly being put in with much younger peers is enough for me to not place him in school.

My son has been receiving vision therapy privately for the last 8 weeks. The progress he has made is tremendous. It is like he is a new child. However, just today his therapist was telling me how she went to school #2 and did an inservice. She said all the administration and teachers thought she was great and felt she was providing a much needed therapy for children. However, they made it very clear that she could not operate in the school and that they would not refer any children to her. If they did that, the school would have to pay and they do not want to pay. It was admitted that they would allow children to work below potential and without appropriate therapy just because of money. How many children could have learning problems eased or corrected but never do because the district doesn't provide specialized therapies??

[Valerie(TX)]

Tracey and family,

I wanted to report in from one of the Dallas/Fort Worth suburbs. I have always homeschooled because we have three generations of dyslexia in the family. My husband did not want his kids to endure the agony of daily, even hourly ridicule that he endured in school--the feeling of being a misfit--smart as a whip, but unable to "get it".

The DFW area is the center of the universe for dyslexia remediation due to the pioneering work of Dr. Orton and Mrs. Gillingham back in the '60s. Scottish Rite Hospital has had a unit devoted to LDs, complete with a lab school and a dyslexia therapy training program, for decades. Many, many Academic Language Therapists have graduated from here and have gone on to work throughout the region and throughout the country. So, the educational institutions in this area have deep, rich resources to draw from....there is no lack of knowledge or understanding, or of help. Yet one of the largest suburban ISDs, within a 15 minute drive of Scottish Rite, with a reasonably affluent tax base, enough to fund bands and football teams at the intermediate school, enough to build beautiful swimming and football complexes, can't find the political will to provide remediation for its students LDs. I kid you not.

I don't deal with IEPs and ARDs, because of our homeschooling. We have paid for psychoeducational evaluations and therapy out of pocket, on our own dime. But dear church friends who have children in the same grade as my youngest have a dd who finally, this last year, scored low enough on her scores (that is to say, the performance gap was finally large enough this year, after steadily growing each year) that she will now be allowed full accommodations in all her classes, not just english and reading. They are doing nothing to remediate her deficiencies, just putting accommodations in place. Three years running she has had to do summer school because she hasn't scored high enough on standardized tests to pass the year, and the only accomodation she gets for that is additional time. Poor baby, the school is virtually guaranteeing that she'll fail each year. It makes my heart sick. Another friend has an older girl who went through the same school system, also a dyslexic, and had reasonably decent grades with accommodations, then flunked out of her first semester of college. Her mother told me that she simply did not have the educational tools to succeed. Sigh!

The first mom I mentioned does her best to advocate for the child, but has not yet realized that what the daughter really needs is not within the scope of what the school chooses to provide for her.

hth

[LizzyBee]

I wanted to add another thought to my earlier post. When two of my kids were tested last year, I asked the educational psychologist about putting them in school. She immediately responded that the older one is not ready to go back to school because she has anxiety that is specifically related to schoolwork. Apart from school, she is a very relaxed and happy kid. Her anxiety level would be much higher in school than at home. My younger one might be fine emotionally in school, but she would need tutoring outside of school in addition to remediation and accomodations in school. I can't see sending a child to school all day and then having homework + tutoring in the evenings. That just makes the days way too long for young children. When are they supposed to play? And interestingly enough, I recently read of a study that shows our young children are not short on academic instruction - they are short on PLAY and it's affecting their future academic performance.

Best of luck to you. I hope your and your stbxh can work something out that is in the best interest of your children.

[TraceyS/FL]

Thank you everyone for taking the time to write.

IT's been a hectic few days for me - i finally was given the insurance info for 2 of the kids and have been trying to get that sorted out.

Where i stand right now is:

• the school stated they will NOT diagnose anything, just figure out what to work with. She did seem to think all their testing would be the same as the medical side. We live in an area with access to a huge amount of doctors/treatments - but most people think we are nuts for driving "an hour" to see a doctor. Sorry, an hour isn't anything - my child is worth it.

I got some specific questions answered and know their course of action. It's not as bad as I feared, but not great either.

• Appointment Wednesday with the Developmental Optometrist. We didn't need a referral for this one - so i snagged that to have ASAP.

• PCP appointment June 18. At that I will be requesting my referrals. Endocrinology, ENT, Genetics, Behavioral & Developmental Pediatrics, Orthopedics (am i having fun yet???).

We are actually seeing a temporary PCP because they couldn't get us in until late July - and her meds really shouldn't wait that long. I'm hoping there isn't a problem getting the referrals - but i'm anticipating an easier time because the Endo & Genetics docs are the ones that did our initial diagnosis. They both were willing to work with the learning side at that time - but it was 3 years ago and not a big deal yet.

OK. I'm better now that things are in place on the medical side. IT's been frustrating to not be able to do a darn thing on that side for the last 18 months.

Thanks again.