anyone been here ?

I’m just responding to lend my emotional support. I am scheduled to see yet another professional today in my quest to come to some decision about what remediation/therapies are the right ones for this coming school year. I’d do them all if time permitted, but it doesn’t and I have to prioritize. More than one expert has told me my son is difficult to diagnose. This board has been invaluable to me in terms of educating me so I can ask better questions. I think the population on this board is much better informed than many members of our team!

I also struggle with the severity of my son’s issues. Our original neuropsych. is convinced the reading will come and special ed is unnecessary. She refered me to a colleague who was very concerned about his academic skills, and has pointed me toward a special school. Some think we should consider meds, some don’t. And of course for every consultation there is a fee. Not that I begrudge a person the right to charge for their expertise, but I can’t possibly entrust my son to a long term relationship with a therapist or tutor on the basis of one 45 min. getting to know you session. So the bills keep coming in….

My husband asked me last night ” isn’t there one person who can pull this all together ?” and right now I think the only person who can do it is me. Call me Dr. Mom.

I can understand how you are feeling. I have a son, a brother, and a sister. They all have varying degress of learning disabilities and they all are not getting the right services.

It is so confusing to know what each one needs and if they are getting the right help. I will say that thank heavens I found this website, aside from the occasional tiff about teachers, the people on this site have helped me more than I can say.

It is comforting and helpful to have other people experiencing the same types of isssues.

I hope I figure it all and I hope you do as wel.

K.

Definitely! It seems that most professionals had their own agenda (read diagnosis) and that no one could help us develop a plan to help our son. So, we trusted our guts and our knowledge of our son. We stayed away from quick fixes and tried to stay with solid instruction delivered by a skilled and experienced person. We stopped testing and spent our efforts looking for measurable help. Example - our son was frustrated at school both academically and socially. We found a counselor we all liked and my husband said, “No testing, just help my son.” Academically we were able to keep him in public school through 8th grade. We balanced interesting classes and modifications. Our main goal became keep all of us sane, let our son use his strengths but that gut-wrenching failure is not acceptable. Finally, we sold our house, changed jobs to put him in a private LD school where he is accepted, liked, learning and successful. We are still plugging away at his disabilities, but we spend as much time being happy and busy. We are very alone in our quest, but fortunately as a family we are intact and helping each other.

I know the feeling! Many people think my daughter is “just lazy.” I wrote about the speech therapist’s comments in a post yesterday. My daughter is “borderline” everything! That makes diagnosis very difficult! I think it would be easier if she had some real discrepancies. The speech therapist seems to think there are discrepancies between her IQ (upper average) and her auditory processing.

It is difficult to keep spending all the money and not even really know if it is the “right treatment.” I’m probably going to have further language testing done, as the therapist said it would be more in-depth than the testing the educational psychologist did.

Good luck to all of you and thanks for listening!

Margo

We just met with someone who might be * the one* to provide remediation for our son. Its not that she was more brilliant than anyone else, but she seems to have multiple skills that would enable her to address more than one of his areas of need. This would allow him to have a somewhat normal life while getting the help he needs. Also , she’s familiar with his school (private school) and has a pleasant and positive outlook. ( I had spoken with one person who told me she doesn’t like to work with kids if they haven’t taken their meds b/c its “too annoying when they don’t look at you…” uh hello, we may not be medicating my son, so we need someone a little flexible…)
So lulu, keep talking to people until you feel satisfied that you’ve assembled the right solution. Hang in there : ) !

I am an SLP working in the schools….I think you are going in the right direction with further language testing. Good luck, I hope you get some answers. Alot of kids have language disorders that are easy to overlook and reg ed teachers label as laziness. best of luck!

Have I been there? Yup,yup,and yup.

3 basic facts that I have encountered on my quest to educate my children.

1. ADHD and LD children are big business. They make some people very,very,wealthy. From evaluators,to pharmacies.

2. You WILL know the law,the rights and sometimes the research better then the school will.

3. Your best source of information will be your kids.

The Parent has a vested interest. They are the ones who,know their child best,they are the ones who will always be there after any and all things have been tried. There is a lot to be said about gut feelings,and the best thing you could do is listen to it. An informed consumer is what you must be. Like anything else you are a customer,if you feel uncomfortable about what there selling,there is probably a reason. The different answers will continue,it will be ongoing,the one thing you have they don’t, is a relationship with your child,ask them.My two have more labels then you can shake a stick at,in the end,you could call it blue banana disorder,as long as they get the services they need to be succesful. To me I feel like I wasted soo much time wanting the name,what you call it,I felt like I would get the name,once I got the Name,then I would know what to do,and it will be done,finnished. Well I am here to tell you there isn’t a day that goes by that something comes up that I have not a clue on what to do.Being a parent of a child who has an LD is a journey,it doesn’t end with diagnosis,and treatment,the needs change as they grow,and there will always be something to learn. Soo,aren’t you glad you got all of us to talk to?

You would think you could give someone a pile of money and have them tell you what needs to be fixed and where to go to fix it and then pay other people a pile of money to do the fixing. But the fact is no matter how big the pile of money you might have to spend this way, you would still feel as frustrated as someone who has only the tiniest pile of money to spend.

Those who diagnose often do the fixing, so there is a natural bias to find problems of the type they are trained to fix. Sometimes, the diagnosers may not be the ones who do fixing, but then they are neuropsychs who seemed enamored of diagnosing quasi-medical conditions they are not qualified to opine on—finding conditions that “fall along the autistic spectrum” seems to be a current favorite, even though it’s totally unhelpful in getting appropriate remediation and sends parents into a total tailspin—how could they have not noticed that their nine-year old was autistic for all these years? How could they have noticed, the neuropsychs have just stretched the definition of autistism so that at least 80% of the population could be placed “on the spectrum.” Did these people become neuropsychs because they didn’t get into medical school?

I have invested huge amounts of time and money in remediation—some of it was definitely helpful, like Fast Forward and language therapy. Others really did not produce much—interactive metronome and LMB V/V. I know others have not had the same outcomes—all of this is very unpredictable. The only thing my child does now is see a counsellor once a week now—helped a lot initially, now not so sure, but he likes going so we continue.

The biggest stresser has, hands down, been homework. I am beginning to think that somehow a new educational theory has arisen, which I call teaching through assignment. Teach them how to write a summary by assigning them a summary to write. Why bother spending time actually teaching them bit by bit how to do it? Give them an assignment and sooner or later all those red marks on the final product will sink in. Or if the parents can’t bear looking at all those red marks maybe they will just spend hours and hours guiding the kid through it. Either way, the teacher is relieved of actually teaching.

And oh, by the way, don’t let up the burden on parents even during the summer—make sure the child has a math workbook to complete and at least six book reports to turn in. And obviously, if homework/summer assignments are not done it is the parents’ fault and useful eveidence to present against them when the parents complain that the child is not being taught properly.

Any teacher I had in elementary school/middle school would have laughed if anyone had suggested it was the parents’ job to make sure homework was done. They viewed homework and its completion as strictly a matter between the teacher and the child.

Teachers not teaching, homework the responsibility of the parent—when did all this happen, why are our children so poorly served, and why does learning have to be a race, rather than something pursued at the pace most comfortable for each child?

One of the best things you will find will be a therapists/tutor who is willing to talk with the other ones and come to understand your child better through talking to other therapists. It helps a lot. And one who is willing to hear what you are saying as you know your child best. Just things to look for. School systems will often give a different diagnosis than private practitioners. This is often due to financial pressure in school systems. Private practitioners however often hold to certain philosphies of treatment, whah. It can be confusing. Again, your best bet is using your intuition for a therapists/tutor who is willing to work withyou and others and diagnose over time. I am fairly good with diagnositcs ona first visit but I have found that it is better to wait and get to know the child better before really delving into a diagnosis and treatment. Where one starts may need to be shifted as one learns your child better. In the end , the diagnosis may not be as important as the remediation although it can help ease one’s mind to know. Think about hwta goals you have for your child, first in general and then realistically. Be specific. Talk to your therapists about these and see what they say. When you know what gians you want in the short and long term and can talk about this with your providers it will help both you , them and your child. Diagnostics is an art as much as a science. Trust your judgement.

I am having such trouble finding a speech therapist! The clinic the Doctor recommended won’t have a SLP on staff until some time, maybe, the end of July. We live very close to a Rehab hospital, after several attempts and a visit to the hospital to drop off copies of his speech and lang eval the SLP called back and said, “I don’t understand, what exactly is it you are lookin’ for?” So their out of the quetions.

There are a few private SLP but I am not sure if we can afford them, I don’t know what to do?

He definately could use the speech and lang therapy but I can’t find an SLP and even when I do, I don’t know what I am supposed to be asking them to do

K.

You are completely right, as you have been on other unrelated posts! And many of your suggestions echo those of one of our most trusted advisors - my son’s former speech therapist (he’s not currently in speech…) I’ve been fortunate to choose people to work with that for the most part are very collaborative with me, the school and each other. One thing that I forget when I post my questions/comments, is that unlike most parents on this board (and in this situation) we have been able to provide services for our son privately, giving us the luxury of choosing who will treat him. We also live in a large city with many providers. Its a double edged sword though - I may not be fighting my local school system, but my son also doesn’t get any help during his regular school day. Its all done after school which is draining.
Anyway - thanks for the great guidance.

~~What has worked for you in terms of coming to peace with the extent of the disabilities and that your course of action is appropriate? Is this even possible?~~

We knew that our youngest son was wired up differently very early.
The oldest two and Dad are all mildly dyslexic.

But youngest son was different.
He would never sit still to be read to,
his mechanical abilities were very advanced
along with his mathmatical skills.
He lasted about six weeks in kgarden until the
teacher was yelling DRUGS!

Now youngest son is 13 and what I have learned
and what I still wonder about:

- he is always going to be dyslexic and will have to develop
the most coping skills of the children. This will probably never
go away or at least to the extent that his siblings became A students
and are in the top 100 of 470 in their class. Will his reading skills
always drag down his language and history classes.
- he did learn to read! Somehow the mish mash of stuff his
resource teachers tried and what I tried at home finally sunk in.
- I wonder if he’ll ever read for pleasure, he is starting to try now…
- I shouldn’t have worried or panicked as much as I did.
- I should have paid more attention to how he sees himself
learning.
- I still wonder how big my picture is going to be. Will he
still need lots of help in high school? What about college?

Have you checked with the Internation dyslexia Association in your area for refferals. I found a brilliant Neuropsych that way. She called me and we had along talk on the phone. This way these professionals already have a good handle on LD and how it interferes with cognitive functioning.

I was frustrated with the services my son was getting. He was diagnosed LD by the district. He was diagnosed by a nerologist as haveing glabal and speech aprraxia. By the time he entered 4th grafde he still could not read and I was going nuts. I found an old issue of Time magazine (Nov 99) in the work lunchroom. It talked about lindamood bell and its success stories. I made up my mind to try it. It was very $$ and I was very nervous but it was the best money I ever spent. The resource specialist at my son’s school said it was the “cadillac” of programs and pooh poohed it. So much for the “expert” opinion. It was the only way he learned to read.

Sorry to get off the subject, but your post made me think… how do you all do Lindamood from a timing perspective? Do you pull them out of school, do it over the summer?

I couldn’t have said it better myself. You hit all of my hot points. You have been where I’m at, haven’t you?

We just finished the neuropsych. What was the diagnosis? PDD, closer to Aspergers. Exactly, how did I miss this for nine years and she was able to see in in an hour and a half with him. I AM STILL IN A TAILSPIN ABOUT THAT WHOLE THING.

The pediatrician and our private psych say no way! Diagnosis is baloney. The most expensive baloney I ever bought and I can’t even eat it!!!!!!!

I share the sense of exhaustion you write about. I can just feel it! Don’t ya just wish we had a crystal ball? I just want to know the truth instead of trying to guess who wants to take my money next. You are so right, the experts look for what they are trained to fix. So no matter where you go, you’re gonna get different answers. You make a lot of sense.

Thank you for sharing and I wish you much success in your pursuit.

I think that’s where I am and I’m glad you pointed this out. Panic. I am definitely in panic mode. What if I’m not doing enough, the right thing, too much, too much pressure on him, not seeking out the right opinions, etc.?

I also think he is beginning to sense that this is eating me up and that can’t possibly be good. But I don’t know how to hide it. I tend to wear my emotions on my sleeve and I just can’t help that.

I definitely know what I want in the end. A HAPPY, INDEPENDENT CHILD. This is what keeps me awake at night. School make my son a very unhappy boy. And I need to know how to fix that NOW. I let the school tell me for 3 years that this is all normal for an LD child, don’t worry about it. Then he comes crashing down this year. So, given that experience, I feel like everything is urgent when it comes to him. I can’t stand to see his self-esteem in such despair.

Thank you for your words of encouragement and advice.

I’m so glad to hear your success story! Monday I have a meeting with Lindamood-Bell to see what’s what with them. It is an hour away, but we’ll see what happens. Maybe they can come to us, I hope. Any words of wisdom as to what I might want to ask of them? Things you have learned from the experience? Would be much appreciated.

I am wondering the same thing. Ideally, I would like to have them come to the school. It’s an hour away from us and I would like him to have it DURING THE SCHOOL DAY. I would consider that part of an Individual Education Plan (IEP) wouldn’t you? I know I’m probably dreaming, but I’m gonna give it a shot. I know they have tutors all over, maybe its possible.

!

Sorry, Lost the 1st post which was running a bit long, anyway. But I don’t want you to feel worse after seeing LMB. The clinic si very different from LMB tutours. They have nothing to do with the tutours who are independent agents. They refuse to endorse them which I can understand since they have no control over how good the tutours are or how they use the system once they leave the workshops. And remember if you use a teacher trained in LIPs but working in the school system she will not be able to work with your son one on one and intensively as in the clinic. He may learn but you can’t expect the miracles like I’ve seen in my son.
If you haev insurance see if they’ll pay for speech and language -many do. If so see if they’ll pay for part of the LMB clinic. The clinic will cost about $12,000 for 6 weeks. Yes, I know that figure hits you like blow to the belly, but if it IS what your kid needs I don’t think there is another program that can do the same thing.
Check on the tutour bulletin boards on the net for LB tutours in the area. If you’re that close to a clininc there might be trained , experienced tutours around. Do NOT expect to get referrals from LMB,I repeat. If you hire a tutour I would suggest you again need to look at 5 days a week 3-4 hours a day for 6 weeks. If your son is really suffering then HE needs to feel achange and a difference pretty quickly. You will not get the same results one hour once or twice a week. In other words if you go with LMB accept it is more important than reg school and MAKE time for it. If your son isn’t learning in school then so what if he misses 6 weeks. That should be negotiable with school- like a medical treatment.
The other opton you could consider if there are no suitable tutours is train and sponser one yourself or better yet with a few other parents. Depending on where you are plane ticket, hotel, courses for 5 days shouldn’t run more than $3,000. That person is then retrained for a new career and our arrangement was we’d then get the value of tuition up to our contribution. Our tutour happened to be a friend of the family who was a trained nonld teacher who quit to homeschool her kids 15 years ago. She is 59, has a new career- we have a dedicated tutour willing to adapt her schedule to our needs as parents. Incidentally she’s even thinking about rigging up an RV to do this in retirement with her husband and travel and teach at same time. If I hadn’t found her I would have looked at the nearby teaching college and community college for
nwe grads looking for a way to finance grad school. Psych, teaching, spec ed, speech language majors should be good candidates.
Sorry this so long,but I remember being where you’re at last winter.

LMB is one of the best program you can get for phonomic awareness (dyslexia). WHen my daughter was diagnosed my evaluator said DONT put her in special ed. Get LMB. Which we did. WOW. Is all I can say. I’ll never forget my tutor saying “She will read as well as anyone else, just in her own way”.

The school did not like it when I told them “my daughter has very specialized needs and needs very specialized tutoring - we are pulling her out of school early (2x wkly) at 1:30 and going to an LMB tutor (2nd grade). She suggested their “direct instruction” method and I said no thanks. They finally agreed that they couldn’t condone me pulling her but they couldn’t stop me. I could have tried to fight the school and make them provide it; however, I knew that lawyers’ fees would provide a lot of tutoring and while I fought my daughter still wouldn’t be able to read. Some people don’t like this thinking (other parents) and says it doesn’t aid others, however, I wasn’t going to allow my daughter to fail and take that blow to her self esteem that failing provides.

She was in the 34% in 2nd grade in reading. SHe is now in the 87-93% for reading comprehension though word attack is still lower (about 65%). Almost 2 years later. LMB is tough, there’s a lot to it. But it gets results and isn’t that what you’re after? A word of caution. I would try to get a tutor who has been doing it awhile and not just someone who has recently finished a 6 wk. course. 2x wkly is the minimum they will provide LMB and most children will need it more often. It is an amazingly effective program. VV also works on comprehension and VV is part of their program as well.

Hi, just my two cents, but I suspect that your panic is due to seeing your baby in pain. No Mom can handle that. Is there anyway you can pull him out of this school until he’s remediated enough to be able to handle it? Homeschool , a tutour, some kind of charter or ld school? Even just for 6 mos or a year? Once you know he’s not hurting you’llprob be able to think more clearly about which programs will work. The first time I called and the only local shrink who did testing cost $850 and not even a nueropsych I made the decision not to do any testing but to save my money for private remediation. Testing is very subjective,dpends on the tester, and frm the questions I asked I decided that the best I could get would be suggestions as to how the kid learns. I decided that between the experience of the local homeschooling group and my attempts we couldfigure that out ourselves. Then I read everything I could find on every symptom that my son had, then I followed up reading every possible remediation.Then I sat down and wrote out my priorities. What I wanted for my son. For us it boiled down to -learning to read. There are only 2 programs that seemed proven effective. PG and Lindamood Bell. Tried PG- no good. We ran to LIPS.Too expensive. See post below, but we trained our own tutour. Our problems aren’tover. Jack is always going to learn differently. I’m not sure he can ever go back into a reg school system and excel. He’s not just a square peg but an oblong with little triangular and round bits on the side. I will not have that return to normal life Mom’s expect when their kids start school nad you can forget about them for 5-6 hours a day, not for the foreseeable future. But I can accept it now and get on with it-like Jack.
Reporters are trained that if you find the same info 3 times from 3 different sources you can go with it- it’s probably as close to the truth as you’ll get.
I don’t know if that ‘ll help you wade thru all the info , but it helped me.
Good luckto you and your son. Use the panic,but don’t let it take you over. It’s like when you brought him home from the hospital and you realized nobody was there to tell you what to do for him. God, I know I panicked-but we coped and learned together Jack and I. Trust your instincts,learn from your boyo what he needs.

Lulu, your feelings are normal given the circumstances. I hit a low point this past spring where my anxiety about my son was starting to reach levels that I knew were not healthy. I’ve been seeing a therapist now too! If you feel that your panic is affecting him, then you need to find ways to alleviate it for now . Whatever works for you. And know that you are not alone.

Well , we don’t even have an IEP because my son is in private school. I am looking into just having his regular tutor come into the school, but I don’t know if they will allow it .

Thank you very much for both of your posts. They were both VERY HELPFUL! Your suggestion for taking him out of school certainly makes sense but I am afraid that I will not be able to do a good enough job with him. , if I was anywhere close to “somewhat successful” in helping him he probably would not be floundering as much as he is now. And he definitely cooperates more with someone outside than he does with me or my husband.

But here is that same dilemma, big price tag for Lindamood-Bell and no guarantees. I know, there are no guarantees in life, I’m just thinking out loud now.

I really admire how you took matters into your own hands and devised your own solutions. Bravo to you and best wishes for the future. Thanks again

I too have a child that isn’t easy to classify. I have thought a long time about your message and what we have done that has worked and what hasn’t. My son is a difficult LD case. He doesn’t always respond like other LD children. So I not only have an LD child, I have the unusually difficult one because of his particular constellation of problems. The most success we have had is with people who see him as a challenge—who try to figure out why he isn’t responding like most other kids. The two therapists who have worked well with him are intellectually curious—they are trained as audiologists (my son has AP problems among other things) but are not limited in their approach. We did Interactive Metronome with one of them. She got interested in IM because she felt she had nothing to offer her clients who weren’t good candidates for Fast Forward. On the other hand, we ended up with a pretty negative experience this summer with a slt trained in Lindamood. My son just didn’t seem to responded according to the way she thought he should (like other LD children she had worked with). We finally had to stop the tutoring because she really didn’t have the intellectual flexibility to figure out other ways to approach the same material.

Beth

I have done it both ways. Summer is better. Less stressful, no homework. A friend used to take he child out of school early to go but later regretted the decision because the child was missing the fun part of the day. Timing of the day is the issue you must carefully consider.

UK mom is right. Especially about independent tutors. The tutors must be mentored AFTER they finished the program to ensure success. I was luck to find a clinic set up by a few former very experienced LB clinic directors that was close to my house. They ran the clinic exactly the same but with more flexibility. I visited LB clinic too, so I was able to compare and save a little money.

I just decided I couldn’t do any worse than he was suffering in school. I’ll never forget our first home lesson.I pressed him to count to 5 a 2nd time and he got to 3 stopped then acted goofy instead. I scolded him and watched him disintegrate into tears and begin beating his head with a book screaming I’m stupid, I can’t do it. Believe me after I got thru kicking myself I figured no matter how bad I was -anything was better than making my son feel like that. I realized he was terrified because he couldn’t understand anymore than I could why he could count to five and then 2 seconds later couldn’t. He felt crazy, humiliated, out of control, angry, terrified. Even wo the dyslexia he couldn’t hav learned with all those emotions going on. I’m NOT the best homeschooler in the world. I’m NOT good at teaching the basics.I was lucky to find an experienced homeschooling Mom willing to tutour and mentor me. I also found that the computer was the best at teaching the basics to my son. From Sept - may when he started LIPS all we could manage was teaching him the alphabet. He made almost no progress except in math, (thanks to math game cd’s and then cusainaire rods)but his self-esteem went from near suicidal to normal kid willing to try to learn. From May til last week he learned to read and spell and is probably at close to a 2nd grade level. I LOVE LIPS.

Robin, I took my daughter out of school 2x/wkly in 2nd grade. It was well worth the time missed b/c she was spending the fund time of the day (recess) standing on the fence b/c her work was not completed. ERRRRR…..

I always seem to write the person’s name I’m responding to in the box where my name goes. Wonder what kind of LD that is?

Where do you live? I can try and look one up for you. Or you can go to the American Speech Language Hearing Association website, a lot of SLPs should have email addresses there. If there is a clinic that has more than one SLP it may be best as they are more likely to take insurance. What insurance plan do you have? One can get quite creative without being illegal about getting coverage although some plans just won’t do it. If your insurance won’t cover call around and try to find someone with sliding scale fees which is what I will do when I can finally work for just me. The International Dyslexia Association is also a good option.

My 13-yr-old son is dyslexic.

Reading on a 5th grade level now.

He has started buying sci-fi and fantasy books.

NOT reading them yet…….. but it is a step
on the right direction.

Today we were at Barnes and Noble, oldest
daughter and I in the coffee bar looking over
our latest purchases.

Son comes up with two choices.

First book has a robot on the cover I page through,
read here and there and say okay.

The second book has two warriors on the front with
long swords and knives. The poor female warrior has
somehow lost almost all her clothing. She only has a few
scraps of leather and feathers to cover her body. A body
which I don’t think exists in nature. She could nurse
quintuplets I’m sure…. the girl is going to need some
serious support in a couple years. You get the picture.

hmmmmm.
I look at son.
He looks at me with sheepish grin on his face.
I say, “this looks a little old for you right now.”
he answers, “Well, look at it this way Mom, I read
so slow that by the time I finish it I’ll be old enough
to read it!”

Anne :-)

Sounds like he has a great sense of humor!! I needed a little chuckle today, Thanks!!

K.

The homework/parent responsibility statements are SO true! We almost killed oursleves last year. There are at least two mothers in my son’s 5th grade class who quit work because doing the homework with their child was so OVERWHELMING! 5TH GRADE! What is wrong with this picture? One of these kids was NOT LD! Why can’t children do their own homework? I thought the kids were supposed to be doing the work not the parents! Since when do I have to repeat 5th grade? Every day the kids where given math homework that they hadn’t learned how to do yet. Well guess who gets stuck doing the teaching? Mom and Dad! Lots of these kids are going to Sylvan too. Why? What teaching is going on in the classroom?
Parents are supposed to have family time with their kids in the evening I hate turning our home into a night school and a battle ground.