You are here

OT- Anyone have Experience with Dyslexia?

amber3902's picture

A few months back I posted about my D8's problems with reading. Well, I suspected she might have dyslexia, so I got an appointment with the developmental-pediatrics department of a major hospital in town.

The waiting list for appointments was over four months long, so she didn't get seen and tested until September 5th. Another two weeks for the psychiatrist to write up her findings and I just met with her to go over the results yesterday.

She confirmed for me my worst fears. My D8 has dyslexia. She is officially giving her a diagnosis of dyslexia with ADD. She explained the ADD is affecting her ability to focus, so it's making her dyslexia worse.

I don't know what to do. Well, I know what I have to do, but I am NOT looking forward to it. I am going to have to take this report to the school and request an IEP hearing. They're going to make me jump through all these hoops, make me feel like I'm a helicopter mom, or that I have munchausen syndrome.

I went through this with my D16. When she was 12 I suspected my D16 had some kind of learning disability, and the school teachers made me feel terrible, like I had munchausen syndrome. Some of my friends gave me flack as well, one supposedly very good friend told me I needed to "stop trying to find something wrong with her!" (My D16 was eventually diagnosed with an auditory processing disorder and ADHD, but I had to go outside the school system to get the diagnosis).

I'm basically a single mom, my daughter's dad was at best a poor, uninvolved father, so I won't be able to look to him for support.

The psychiatrist is going to give me the names of some tutors, but I'm worried about the cost. My BF just found out his position is being eliminated, so he has to scramble and find another job before the end of the year. Things with that should be okay, he has over 15 years of experience and 7 years of college, but that doesn't stop me from worrying. If he loses his job, of course, we'll work through it, but that means I'll have to help out more with the household bills. Which means I won't have money to pay for D8's tutor.

I'm probably getting ahead of myself, but I can't help it. My mom was so lucky, she was a SAHM and she never had to help me with my homework. Me, I work full time and now have two daughters with learning disabilities. Feeling a little overwhelmed.

Comments

moeilijk's picture

I think it's totally normal to feel overwhelmed, especially in the moment of panic following hearing such news.

I think you can handle it though. You learned with D16 that the schools are at best lazy, and they probably get a lot of parents to just go away by making the parents feel guilty or uncomfortable. Don't let their bad behaviour waste your time and energy. Before you meet with the school, decide what question(s) you want them to address. And just keep repeating yourself until you have an agreed plan to help your daughter.

You have until the end of the year at least to look at your budget and see if there's any way to free up some money for D8's tutor. You can also look into ways you can do some of what the tutor would be doing so she might not need as much time with the tutor. There are a LOT of online resources, even mommy-bloggers going through similar situations will give you ideas and insight.

Trust your gut. You've always been right about the big things.

amber3902's picture

Thanks Moeilijk,

I like your advice to learn from the tutor so I can do some of the things myself. And yes, I'm sure there are forums out there for parents of kids with dyslexia.

Stepintime0111's picture

I felt this way when my little boy was diagnosed with autism. Worst case scenarios flooded my brain and I spent days crying about how hard his life might be. Once you get past this initial shock, you will do what you need to do. The school system should never make you feel crazy. You have a diagnosis and they have to work with you and your daughter. Get in there as soon as you can and get the Iep ball rolling. It can take awhile because they have a lot of paperwork and meetings to do and the special Ed teachers get a lot thrown at them. I have my son working with a grad student at a local college, which had helped with costs. A professional was charging us 140 an hour and the grad student is 20.

Good luck to you! Keep pushing for help for your daughter.

amber3902's picture

Thanks Stepintime,

You're right, I guess I AM in shock right now. Weird, because I always suspected she had dyslexia, but getting confirmation was still a shock. I guess I was kind of hoping she didn't have it.

I have an advocate, and I know I will need to request an IEP, but I think right now I'm going to give myself a little time to let the shock wear off.

Pilgrim Soul's picture

Hi Amber,

I see you are in SC. In northern states there is a fabulous resource for kids with dyslexia, which is free to the parents ( the tutoring is free, the wait lists are long though). Look here and may be call them to ask if they can recommend something similar in your state?

http://childrensdyslexiacenters.org/ContactUs.aspx

In my state teachers who are working towards certification in Orton-Gillingham tutor dyslexic kids after school free of chrage thus getting much needed experience and providing a valuable service. If you have an advocate he/she may know of other resources. Get your daughter an IEP but also look outside of school, or band together with other parents of dyslexic children and demand the your school district hire an Orton-certified teacher. That'll teach them to tell parents they have Muncchausen by proxy! How disgusting - but unfortunately true.

There is a good school in Atlanta for LD kdis....cannot think of its name now. May be they will also know where in SC you could find a similar school. Go to your state DOE website and look for state-approved schools for kids with LDs.
Call your Dept. of Ed Office of Special Ed programs and ask to speak to their LD guru if they have one. Ask what services they provide/recommend. Be persistent - these are your tax dollars at work. In my state you can get very good advice from the DOE - the problems begin when it comes to implementation at the local level.

PM me and i might have other ideas. I work in this field. Good luck!

amber3902's picture

Thanks Pilgrim, I actually found that site earlier but realized it was for northern states.

And the psychiatrist just emailed me a list of tutors that specialize in dyslexia. There's actually a school for kids with dyslexia that's only 15 minutes away from me.
http://www.tridentacademy.com/

The yearly tuition is $27,000 buuuuuuut they offer one on one after school tutoring for $65 an hour and summer enrichment programs which run $600-$800.

I already feel a little better. I'm going to give my D8's school a chance and see how they handle things. But if they start giving me too many problems, I will see about putting her in that Trident Academy, they do offer tuition assistance.

I might PM you later if I need to, thanks for the offer.

Hanny's picture

My daughter is dyslexic, she was diagnosed at around age 8. We lived in upstate NY at that time and the school district was wonderful. They worked with her, took her out of class for one on one time. We always wanted to move back to CA and we did when she was in 5th grade. Moved to a very nice beach town in Southern California, did a lot of homework looking into schools, talked to principals, even talked to the 5th grade teachers, who assured us that she understood dyslexia, even said she had a daughter that was mentally challenged, so we put our daughter in that school. It was a waste of a school year, she spent her entire time with the aide in the classroom. finally we got her a private tutor, the school even agreed that she could go to the tutor during school hours because they knew they were not helping her. So we had to pay for what we got free in NY. We moved back to NY after that year because of the help we got in NY from the School District. It was very hard for my daughter and us. She hated school, would cry for days before she went back to school after the summer, she was always afraid that the teacher would ask her to read aloud even though it was stated in her IEP that she never be asked to do so, but she was afraid the teacher would do it anyway. When she was going into HS we moved back to CA, we did a lot of research, even more than before this time and found a small HS in a beach city that had a great program. She had study hall every day, and the teacher in study hall helped her with her homework, study, take tests, etc. She could take all her tests in the 'special education' room if she wanted, have the questions read to her, etc. She never used that so much, but they were very helpful. She was not cut out for college even though most colleges have the same programs available. she became a dog groomer and is happy and making pretty good money and has a career. The word 'special education' is a hard word to digest at first when they tell you this is the label your child will have, but when you can get over that stigma, then you can get her some real help. Good luck and stay strong and check out everything is available to you and your daughter, there are a lot of resources. If you have any personal questions, IM me.

amber3902's picture

Thank you Hanny,

I'm so sorry your daughter had to go through that, but I'm glad ya'll were finally able to get in a school that was right for her!

When I went through this with my older daughter, I WAS concerned about the term "special education". My then MIL at the time, told me not to get my daughter services because she would be "labeled" her entire life. So I declined the services that were first offered to her.

Year later when I finally realized she did need help, it was a nightmare getting it from the school. Had she gotten that "label" when it was first offered, she might not have needed intervention later on.

Now I'm glad to have that "label". It means my daughter should get the help she needs.

amber3902's picture

The advocate is a disability advocate.

I will be getting her meds for ADHD, I drug my heels getting meds for my D16, but when I finally did get on meds, she went from getting B's and C's to A's and B's.

I'm not going to make the same mistake again.

I'm glad to hear your SS is doing so well. Even your friend that didn't get that much help is doing okay. It's good to hear about those type of cases, thanks.

Indigo's picture

Bookmarked this page. I don't have time right now to give you a thought-out post. My son also has been DX with Dyslexia, Dysgraphia, slow-prefrontal lobe processing, ADHD ... alphabet soup of learning challenges and delays.

You are not alone. Congratulations on advocating for you daughter and yes, it's okay to feel overwhelmed at times. It gets better, I promise. More later to you