Frustrated and sad

[tw1nsmom]

I am so stressed, angry and just sad. I've tried to work with the school district on my DS's needs. I know my rights. I know they're wrong. I know that now we need to hire a lawyer and I'm 99% sure we'll win after a major battle.

They refuse to compromise on even the simplest accommodations/modifications. They've failed to provide an appropriate education for DS.

I know we can pay for it ourselves and eventually....a long time from now...get reimbursed. I know we will do that because DS's educational and emotional needs are more important than anything else. However the minimum we can expect to spend for the very specialized private tutoring he'll need will be in excess of $24,000 a year (this is actually the cheap option...a private school that specialized in his learning disability would be over $40,000 a year). None of it would be necessary if they would have just followed the advice of the evaluation from four years ago and would now follow the advice of the current evaluation.

I don't know what the point of this thread is. Maybe it's my version of a primal scream. Maybe I want to know if anyone else has felt this way. thanks for listening anyway.

 

[MM27]

Are you going to the meetings by yourself? If yes, you might want to find a special education advocate. They will know all the ins and outs of what you are able to get for your child and will help you fight for his rights. It stinks that the school is not willing to give your child what he is entitled to.

Good luck to you.

 

[crazymama]

I feel your pain. We have a son with Non Verbal Learning Disability and find ourselves in an uphill swim with the school sometimes. I know that they are very stressed and he has had some great teachers that have really supported him but I feel that sometimes the "talk is not walked." He is in Grade 7 this year and I refuse to let things get missed. I am patiently awaiting some contact from his math teacher to set up a meeting to discuss his specific IEP plan but have not heard back from him since I left him a message over a week ago. I will leave another message and push it till he responds. Math is his greatest challenge and we have a tutor working with him to give extra support to the curriculum he is learning at school but we do need to work with the teacher. Good luck with your challenges!! Don't give up!

 

[belle&beast]

I'm sorry you have to go through this. I am a speech pathologist in the schools (not in NY). One thing I always recommend if for parents to find an advocate group to work with abd reconvene the case conference. If you haven't included an advocate, look into it- they are wonderful in helping parents have their views expressed. Hopefully you will be able to get what your child needs without having to sue.

 

[tw1nsmom]

Thanks for the support everyone. We've gone the advocate route. I even went to training to become a volunteer parent advocate through an organization called parent-to-parent.

This has been a struggle for the past 5 years. The SLP has been trying to dismiss DS from speech for 4 years. We had an IEE at district expense and the evaluators went up one side of her and down the other with a 20 page report saying just how far behind he was in language skills. The district said of course they would continue speech therapy and the SLP said she understood and would be working on writing and implementing appropriate goals. It didn't take long for that to fizzle out and for her to continually say that he tested within normal range and that she understood him just fine.

I should put in that Ds had been misdiagnosed by a local pediatric neuropsychologist as having NLD. Many aspects fit (visual spatial issues, nonverbal reasoning, fine/gross motor delay...), however a big one that didn't was that he also had at least an expressive language delay. He would omit words from sentences, begin stories in the middle, mix pronouns, have a difficult time retrieving words and continued to have articulation and rate of speech issues.

DS also was falling further and further behind in reading and writing. Although the school continued to say every year that he was only 9-12 months behind his peers in reading.

We took him for a comprehensive evaluation (pediatric neuropsych, speech, educational) at a major research/treatment center this summer, in part because we knew something still wasn't right and in part because the district was making comments that many supports and services would be pulled in middle school...one year away.

They discovered that he didn't have NLD. He has Mixed Expressive-Receptive language Disorder as well as a reading and writing disorder. He also is reading and writing more at the 2nd grade level. He's very bright and his rote memory as well as his immense effort had pulled him along (he scored in the superior range in the 4th grade NY state science test).

No matter how many times I brought his communication issues to the attention of the school/SLP they would say "we just don't see it". No matter how many times I would say "Are you sure he's only 1 grade level behind? He really has very scattered decoding skills and his comprehension is literal at best and nonexistent at times....and his writing seems much younger", they would say, "He's doing fine. There are others in his grade who are working at a comparable level."

Now we come to the current dilemma. We, quite reasonably, requested a new district SLP to work with DS. At first they said yes, but then retracted that offer over the weekend. They also won't say which reading program they use. They say they use an eclectic approach. The evaluators as well as local professionals I've taken Ds to to see if they could help on a private basis, all emphatically say that he needs a structured, systematic, multi-sensory method to learning to read and write. They've listed a number of acceptable programs all based on the Orton-Gillingham model. I can't even get them to switch speech therapists or tell me what method they use.

I know I have the documentation to take them to court. They know I have it too. But...rather than working with me to give Ds what he needs their playing a game of chicken to see who calls the lawyers first. What kills me is that the main treatment for this learning disability is intensive early speech therapy. They were already paying their SLP to help DS. She just wasn't doing her job. If she had been DS wouldn't be having the difficulties he is now or at the very least would be so much further along.

Sorry for the book. I haven't slept through the night in weeks. I know we can get the help for DS privately. I also know we can EVENTUALLY force the school to pay. However, that could take years. Now I have to find a way to find an additional $2,500 in our monthly budget without having us go into crushing debt. Anyone have a money tree out there?

 

[s&k'smom]

Best of luck and absolutely hire an advocate. You have every right to show up at the meetings with representation. I would also educate yourself on the special ed laws in your state. Take care.

 

[Anne MN]

Does he have an IEP or a 504, I didn't catch if you said. with the math teacher- send an e-mail. put EVERYTHING to the school in writing. document everything.
I know that with a 504 filing a complaint is actually done thru the office of civil rights. yup- you are filing a civil rights lawsuit- I though it was wierd when I did it!
have not had to go down that road with DD's IEP. I make sure that everything is in writing. I have a few copies of different states and districts procedural safeguards. (we are on 3rd school district in 3 years- might be 4 next year) I would know IDEA- that is the law and fair and equal access to education (I want to say FAPE) know your rights. it's an uphill fight, I know from experience. the district that I filed against- I didin't care what happened to them as we were moving, but it got the whole district (every teacher) 2 weeks of retraining, that is all I was looking for, that and oops we are sorry. I got that from the head of special ed who was a big pain in my rear most of the year!
It will get better- I would bring and advocate, or even one better if one was not available a tape recorder. I would tell everyone that I was taping the meeting to make sure that I didn't forget anything- no one said they had a problem ( I know the director did but he didn't say anything)

 

[eliza61]

Hang in there Twins. first, try to take care of yourself. I know it's very frustrating but remember you are your son's best advocate so if you get sick or frustrated who's going to champion him.
My son also has disabilities and it is very frustrating trying to get help for kids with special needs.

 

[LuvOrlando]

I have no advice, just

I was wondering which of the social services would be the first pulled due to the lack of taxes coming in, I guess this is one of them

 

[The Mystery Machine]

I don't have any advice either just some .

 

[agnes!]

If you can't get a hold on an attorney for the next meeting, take a friend. In a suit. Dark suit. And male preferably.

Can you contact any local civil-rights groups? Maybe there might be a lawyer who could at least write a letter to the school detailing your concerns.

I know you probably already have all the following info, but maybe it could help, I don't know, I felt so helpless when I read your story(and maybe if you don't need it, maybe someone else who will read it does):

Center for the Disabled/New York (I can't tell if these folks are just for Manhattan/Queens, but maybe they can give you contact info for a group/lawyer local to you)
http://www.cidny.org/cidnyweb/npo.jsp?pg=detail22
http://www.cidny.org/cidnyweb/npo.jsp?pg=detail5

Parent's Guide to Special Education
http://www.emsc.nysed.gov/specialed/publications/policy/parentguide.htm#ReqDue

New York State Commission on Quality of Care and Advocacy for Persons with Disabilities
http://cqc.ny.gov/
http://cqc.ny.gov/contact
(In the following URL, look for the appropriate regional office for where you live)
http://cqc.ny.gov/advocacy/protection-advocacy-programs/palist

Good luck and God bless,
agnes!

 

[allison443]

I have no advice, just

I was wondering which of the social services would be the first pulled due to the lack of taxes coming in, I guess this is one of them

Well, OP said this battle has unfortunately been going on for five years, so I don't get what you're referring to. I guess you're making a political comment?

OP I am so sorry for what you are going through. You sound very familiar with the ins and outs, so my only advice is to make sure to get a lawyer who specializes in these cases and has a good track record. Word of mouth from other families can sometimes be the best recommendation for that.

Best of luck to you.

 

[LuvOrlando]

Well, OP said this battle has unfortunately been going on for five years, so I don't get what you're referring to. I guess you're making a political comment?

OP I am so sorry for what you are going through. You sound very familiar with the ins and outs, so my only advice is to make sure to get a lawyer who specializes in these cases and has a good track record. Word of mouth from other families can sometimes be the best recommendation for that.

Best of luck to you.

No, not at all, in case you never noticed the economy has a life of it's own, and now it's world wide but I can see how some people might get confused about it. There is a whole lot to it and if a person wasn't interested in doing complete research he/she might get things mixed up.

Don't launch attacks where they are not deserved, it's just not ok and I'm really not one to let it slide.

 

[tw1nsmom]

Again, thanks for all the support everyone.

Lets not get into a greater political debate about this. This is not a money issue on the school's part.

DS has an IEP. They agree he needs services. He already gets two 30 minute sessions of speech a week. The proposal only increases it to three 30 minute sessions. The problem is the current speech therapist is incompetent. I'm not the only parent having problems with her. It would take me less than a minute to think of at least 10 other parents who have been dissatisfied with her services. This is the only speech therapist in our neighborhood school, but there are many others throughout the district. I was only proposing that they utilize one of the others for DS. In the absence of that we will have to pay for private therapy because I will no longer trust this particular therapist to do the job. If they can't prove that they can provide a reading specialist that is trained in one of the multi-sensory reading programs we will have to pay privately for that too.

I already record meetings. I already work with an advocate. All the outside professionals involved are appalled at how our district has handled this.

The main problems are that our district doesn't like outside people (even parents) telling them what to do...ever. Second, the focus in our district has always been the best and the brightest. Until some lawsuits about 10 years ago they rarely put a child with any kind of special needs in a neighborhood school. They would go into a self-contained class or, more often than not, be shipped to another district where our district would pay tuition for them. Last, they have the attitude that they'll do whatever they want until they're sued. They know that most parents won't take that final step. They know that most parents in the district have the money for private therapy/schools. They know that if they put enough pressure on the child that many parents just choose to move.

I've fought for DS and gotten him the services. speech, reading, shared aide, resource. However, they have one program to teach reading and if a child doesn't respond to it they do more of the same program. What DS needs doesn't involve a great increase in services. It involves them realizing that their methods haven't been effective for DS and they may not know everything about everything. This was they case 5 years ago when money was flowing and it's still the case now when money is tight.

Frankly, I think that they think he's doing pretty good for a sweet mildly ******** boy. I think they think he's lucky to be with them and that my expectations are too high. I think they think that they're going to put him on the track for an IEP diploma and a vocational rehabilitation training program. The problem with that is that he's not ********. Most of his IQ subtests have him in the upper average range (minus those involving receptive/expressive). He also has this annoying habit (for them) of having phenomenal rote memory and doing really well on science and other fact tests.

I would move or homeschool in a heartbeat. However, DS actually loves going to school this year. The kids think he's weird, quirky, and immature, but they also think of him as a sweet younger brother. He's known them all since he was 4 and at least for this year he has enough protectors that they squash down those that try to take advantage of him. DS doesn't want to miss out on all the 5th grade activities and certainly doesn't know about or understand the lack of appropriate instruction.

I guess I was just looking for a "hang in there" or "wow, I've had those feelings before"....for all those that did just that...Thank You.

 

[jodifla]

Thanks for the support everyone. We've gone the advocate route. I even went to training to become a volunteer parent advocate through an organization called parent-to-parent.

This has been a struggle for the past 5 years. The SLP has been trying to dismiss DS from speech for 4 years. We had an IEE at district expense and the evaluators went up one side of her and down the other with a 20 page report saying just how far behind he was in language skills. The district said of course they would continue speech therapy and the SLP said she understood and would be working on writing and implementing appropriate goals. It didn't take long for that to fizzle out and for her to continually say that he tested within normal range and that she understood him just fine.

I should put in that Ds had been misdiagnosed by a local pediatric neuropsychologist as having NLD. Many aspects fit (visual spatial issues, nonverbal reasoning, fine/gross motor delay...), however a big one that didn't was that he also had at least an expressive language delay. He would omit words from sentences, begin stories in the middle, mix pronouns, have a difficult time retrieving words and continued to have articulation and rate of speech issues.

DS also was falling further and further behind in reading and writing. Although the school continued to say every year that he was only 9-12 months behind his peers in reading.

We took him for a comprehensive evaluation (pediatric neuropsych, speech, educational) at a major research/treatment center this summer, in part because we knew something still wasn't right and in part because the district was making comments that many supports and services would be pulled in middle school...one year away.

They discovered that he didn't have NLD. He has Mixed Expressive-Receptive language Disorder as well as a reading and writing disorder. He also is reading and writing more at the 2nd grade level. He's very bright and his rote memory as well as his immense effort had pulled him along (he scored in the superior range in the 4th grade NY state science test).

No matter how many times I brought his communication issues to the attention of the school/SLP they would say "we just don't see it". No matter how many times I would say "Are you sure he's only 1 grade level behind? He really has very scattered decoding skills and his comprehension is literal at best and nonexistent at times....and his writing seems much younger", they would say, "He's doing fine. There are others in his grade who are working at a comparable level."

Now we come to the current dilemma. We, quite reasonably, requested a new district SLP to work with DS. At first they said yes, but then retracted that offer over the weekend. They also won't say which reading program they use. They say they use an eclectic approach. The evaluators as well as local professionals I've taken Ds to to see if they could help on a private basis, all emphatically say that he needs a structured, systematic, multi-sensory method to learning to read and write. They've listed a number of acceptable programs all based on the Orton-Gillingham model. I can't even get them to switch speech therapists or tell me what method they use.

I know I have the documentation to take them to court. They know I have it too. But...rather than working with me to give Ds what he needs their playing a game of chicken to see who calls the lawyers first. What kills me is that the main treatment for this learning disability is intensive early speech therapy. They were already paying their SLP to help DS. She just wasn't doing her job. If she had been DS wouldn't be having the difficulties he is now or at the very least would be so much further along.

Sorry for the book. I haven't slept through the night in weeks. I know we can get the help for DS privately. I also know we can EVENTUALLY force the school to pay. However, that could take years. Now I have to find a way to find an additional $2,500 in our monthly budget without having us go into crushing debt. Anyone have a money tree out there?

I am sorry you are going through this. I'm on a message board with parents of hundreds (and we just moved, our last board had thousands) of kids with MERLD. It's often misdiagnosed, typically as autism, in clinicians not skilled in differential diagnosis.

We are getting help through the school system, including a full time aide, speech, OT, pullouts and pull ins as appropriate, and other accommodations. But it wasn't easy. We had to have a special education lawyer (we only consulted with her, and did not bring her to meetings. But we did let the school know we had her on retainer.)

And most importantly, we went to Vanderbilt to specialists who know and understand MERLD. We go annually for updates and testing, and come away with a detailed game plan each year for the school to follow. The school really doubted the Dx at first, now they can see how it is his language disorder is affecting everything. Everything they told us at Vanderbilt 5 years ago is unfolding just as they said it would.

I can PM you their info if you like.

 

[kwitcherkicken99]

My student's two sisters had a court battle over their needs while in middle and elementary school. It got pretty nasty, but they won because the school outright refused to accomodate their needs.

It's possible to fight that fight, but it was very trying on the family. Eventually they moved to a different school system (the one they are currently in) and it's been a whole new ball game for the better.

Best of luck finding your resolution.

 

[LuvOrlando]

OK then, I guess there is more than enough money in the pool for Special Education and you guys don't need any more so that's good to know. Didn't realize I was so off the tracks with that one, I won't make that mistake again.

If home schooling is an option for you why not just let the school do what they are doing and home-school what you think he is missing at home? That sounds like a perfect compromise. It would totally strengthen the bond you have with your son and he would get the best individualized attention available, you besides, home schooling supplements wouldn't cost nearly as much as your other options.

 

[Mermaid02]

Just want to offer my support. My son has several diagnoses and while he is high functioning- it is a daily struggle. We have a 504 plan and it's time for another meeting- it makes me cringe.

 

[jodifla]

OK then, I guess there is more than enough money in the pool for Special Education and you guys don't need any more so that's good to know. Didn't realize I was so off the tracks with that one, I won't make that mistake again.

If home schooling is an option for you why not just let the school do what they are doing and home-school what you think he is missing at home? That sounds like a perfect compromise. It would totally strengthen the bond you have with your son and he would get the best individualized attention available, you besides, home schooling supplements wouldn't cost nearly as much as your other options.

But the thing is, the child is entitled by law to a Free and Appropriate Education. It's his right.

Also, if you can get the school on board, there often are teachers who are really splendid at dealing with the reading and writing issues the child has. I can be very difficult for a parent to do this...that's why special ed teachers get so much training!

Sometimes, things are worth the fight. And sometimes, you just have to say you are ready to fight. Just the mere mention of our lawyer's name (she's well-known in the state) made our team take us seriously and give us want we needed.

 

[MissyDVC]

Just a from one Mom to another