Hi, My son, age 9 has been diagnosed with language dsylexia. We were very fortunate at our last school when the child study team classified him so he could get a head start, even though at the time he tested average. At the time, the neuro said he was too young to “officially diagnose” but was sure this is what was going on. Now, in 3rd grade, he is up for a reavaluation with the child study team.We are at a new school, and in the first meeting, the case manager tells me she would have never allowed him to be included in the special ed program. I was devasted, He is a very bright boy, if he hears it, he knows it.. but he can not read at all.They say hes two years behind but still gets confused on site words as well. And its affecting all his subjects, I dont know where he would have been with no help these past two years.He has been in an inclusion class. Now I’m afraid he will lose the help he needs. If he takes the test and some how passes, the help he needs will be go. I was also told that dyslexia wouldnt qualify him for help because it is not a learning disabilty. Now, the Neurologist said that he believes my son needs to be in a special school for the learning disabled. The case manager said that was only his “opinion”. I cannot alone afford this specialized schooling for him, but am afraid he will get lost in the system. This is all very new to me, any suggestions would be helpful. Thank you again.
~Ann
Re: Not sure what to do
Ann,
Let me make a couple of clarifications. Dyslexia in school language is a reading disorder. A child can have a learning disability in reading. The word dyslexia is really irrelevant in regard to your child qualifying for services. What matters is if there is a discrepancy between your child’s ability level (IQ) and his achievement in a particular subject. I can fairly well assure you that if he is age 9 and cannot read, or is two years behind, then he will certainly be likely to qualify now. But I would have to question you about one thing. What are the services that he has been receiving besides being in an inclusion class? Has someone been working with him to remediate the reading disorder? What have they used to remediate it? It sounds like he has made little progress.
I would suggest that you not worry about the terminology. If you are dealing with the school, use the term reading disorder or reading LD.
Janis
Re: Not sure what to do
Dear Andy,
Thank you for your informative reply and links on which to begin my study of this. My son was evaluated by a seperate neurologist with no connection to the school or board. I brought him on my own this past month to the Neuro as I just knew there was more happening with him.(We are having alot of self esteem problems this year and really can see how far behind he really is now) I certainly didn’t feel like the case manager was there to help provide the best for my son, but i think part of it was my lack of understanding and knowledge on how the system works. I hope to be ready for our next meeting. I will be sure to ask for everything in writing.
For one, i have recently hired ( my fourth tutor, (since 1st grade) who is specially trained in the reading program recommended for my son by the neuro. I later learned that there is a teacher at the school, who is currently teaching the same method to other students. I asked about this for him but he was denied. The head of the special ed dept feels the program hes been in for the last year and half is just fine…I have to find some backbone now and give her another call.
Thank you for time and help
Ann
Re: Not sure what to do
Go to the home page and click on LD in depth, click on assessment and read the article on understanding tests and measurements.I found it informative. Make a chart of your childs progress.You can ask for the standard scores for your child and chart them from year to year for reading,and math.That way you can show the school if your child is not progressing and that their program is not working.I have just recently saw this and wish I had started earlier. Good luck.
Re: Not sure what to do
Dear Janis,
Thank you for your reply and explanations of what my son is said to have. It was explained to me as language dyslexia. He did test 2 years behind at the Neuro’s office. The Neuro recommended a school for children with learning disablities, but said there might be a small chance that ortin gillimham method might help him. We just started with a tutor who is trained in this method. The neuro wants to see my son in 2 months for a follow up.
As for what hes recieved at school, the inclusion class has helped because there was a teacher there to read to him if needed. He was pulled out for reading last year and I believe used the the project read program which he continuing with this year. Unfortunatly, it seems and he can see that the other children in his group are passing him. I have had to pick him up from school several times last week for feeling”sick”. Always, during reading class.
His science/social studies grades are good. But has trouble with reading, spelling, and math.
He has his social studies books on tape. This has helped a lot, his tests are read to him and home work is not pushed.Although we try to keep up, I can write for him as he has great difficulty with writing. He can use a number line. He comes home quite stressed from his school day. We also just added councling for him with the school psycologist as his self esteem has dropped so low.
I know they say a parent can add what ever they want to their childs iep to help him, but they never tell you what can be added or what is needed. I cant imagine what he does have right now being taken away from him right now…He is a bright boy and good when told things orally, good at deducting and using pictures to figure things out.. Im almost afraid for him to be tested by the child study team.
I just have trusted the teachers/school that they would do what he needs… up till now.. now im not sure what to think.
Thank you again for your reply, it does help to know that i do have support.
Ann
Re: Not sure what to do
Thank you for the adivce, I am going there now to read up. I have saved all his paper work and many samples of school work but never would have thought to bring this to back to the school and use them in that way. Again, all new to me.. Thank your for sharing your experience.
Ann
Re: Not sure what to do
Ann,
I was encouraged by your post. Project Read is one of the good reading programs for dyslexic children. But it sounds like your son needs more intensive one-on-one instruction to be successful. Orton Gillingham is the granddaddy of all the multi-sensory structured language approaches to reading, so you are on the right track with the private tutor. I think that is your best bet. It is also commonly used as the reading program at private LD schools. Honestly, I think your son will make improvements with the new tutor assuming the tutor is experienced.
Also, the reason I think the person made the statement about your son not qualifying to begin with was that he was not so far behind at that time. Usually children tested in K or 1st grade do not have the discrepancies to meet the requirements to place in special education. But by now at age 9, if your son has a two year delay, he will probably meet the requirements easily.
I think if he can make some progress, he might feel more confident at school. But if he continues being unhappy, then perhaps you could consider homeschooling along with using the reading tutor or else pursue a private LD school. Obviously the homeschooling would be less expensive unless you could get a very good advocate to help you challenge the public school system to pay for the private school. That doesn’t happen very often though. Hopefully in your case, the OG tutor will be the answer!
Janis
instead of the telephone, use stamps
I suggest that you “feed back” in writing everything that the “educator” told you.
“To confirm our conversation of ______________, 2003, it is your opinion that “dyslexia” is not a learning disability. According to IDEA 97 (SOCKS can give you direct Section or write back and I’ll find it for you.) dyslexia is considered one of the areas of LD. (You can even copy it and say” “I have attached of copy of Section ___ for your convenience.” I would also repeat everything else they said. They HATE it when you take what they say and feed it back to them. Be SURE and copy the local school board on your letter. If you can afford it, send it certified mail, return receipt requested to both the school and the board.
I also suggest you get a 3 ring binder and keep samples of his work. Date them and index the 3 ring binder. Keep copies of all your letters and any written responses they give you. Any notes from teachers, etc.
As Janis said, it is almost unbelieveable that he is 2 years behind in reading and doesn’t qualify as LD. Something’s fishy there.
I agree with Andy, you need to get on WrightsLaw and find out your son’s rights and eligibility for help. Administration does not like well informed parents and they are hoping you will listen to them and say “oh, okay” and go home.
If you are not the assertive type (!) call and get a good advocate in your area. YOU are the only one that really cares about your son and making sure he survives at school. Start writing!
Re: instead of the telephone, use stamps
Leah,
I wanted to thank you for such detailed advice, I have now put together a binder with his work and all papers relating to his schooling. There is just so much to catch up on sometimes I feel overwhelmed but I know with knowledge will come power and I will be able to take that stand for my son.
I did meet with the head of Special Ed, and will have to meet with her again as she said she would try to see what she can do but I havent heard a word since. I am worried though about how she jumped on the issue that he may just need medication because he is said to have adhd innatentive type? … which the neuro told me he isnt fully behind yet because my son could just be frusted with the work in front of him and not to go to meds until reading issues are worked out.. I understand this can be a possiblity but would like to see all other avenues taken first…but once the spec ed person saw this she was like you should really put him on meds, try it for a couple of months and see.. I dont know.. He’s never recieved any notes about not being able to pay attention, except in reading class or a time when reading was involved.. And I for one would have trouble sitting when I wasnt understanding things.. I dont think im in denial but I just dont want the school to pass this problem back on to him.. if that makes sence. Lots more for me to learn here.. sorry to ramble and thanks so much for all your help
~Ann
Re: Not sure what to do
Janis,
Thank you for explaining to me how the case manager might have been thinking in regards to Matt’s initial testing in first grade. I dont think I would have paniced so much if the case manager was able to explain it so effectivly as you. Coming from her it seemed more a problem that he was already in and wasnt very supportive.
I did meet with the head of Spec Ed who also explained that when its Matt’s time for reavaluation - I don’t have to sign the form and that the teachers can just suggest for him to remain in the program if needed. That was a great relief, I do hope one day he wont need it but dont want that taken away to soon,ya know?
The tutor has been coming now for 2 weeks ( 2x a week) and Matt is loving it. He really wants to do this and he really seems to be catching on quickly.
He has also started councling so I hope that helps too
Again, thank you and everyone here for such great, supportive advice.
Ann
Ann,
Lots to address here.
Dyslexia is an ld, and if you could get the individual to put it in writing that it is not, you would have quite a time filing a case with many agencies; from the state dept of special ed where you live, to the office of civil rights (fed govt.) etc… This is something we came across years ago, where our district administrators would not even mention the word. To them dyselxia didn’t exist.
If the case manager has not evaluated your son, he/she has no right or objective opinion to offer regararding placement. This administrative position is that of one who is supposed to be there to assist in providing a FAPE for your child.
I am not so certain about the neuro person, as we had our son evaluated by an independent neuropsych when he was in the 4th grade (our son, not the psych). There was extensive evalutations done, the report was drastically different than what the district assessed our son for. Is the person you have had assess your child someone who works for the district by contract or steady employement? If so, I would go to someone else.
Money is definitely an issue with most of us. Your dollars are much better spent with people who will either work with a sliding scale, or with payments; most critical is that they are not financially tied with your district.
Also, you need to start researching and becoming educated with the special ed laws. Go to sites like www.wrightslaw.com, www.edlaw.com. Check out sock’s site from this bb, she has good info for parents too. You may be interested in checking out the DARC (Dyslexia Awareness and Resource Center). They are out of Carpenteria Ca, but have much good info and advice for anyone with dyslexia. IT IS AN LD!!!! I can’t remember the exact site location, but use any search engine and you will find it. The president is Joan Esposito, read her story!
Follow and trust your gut instincts and start getting everything documented and keep track. Ask those individuals to put what they are saying to you in writing and see if it comes to you the same as what they said verbally. Odds are it will not come or it will be drastically different.
Don’t worry about “how your son tests”, just TRUST YOUR INSTINCTS.
Good luck.
Andy