OT-does anyone have a child with a learning disability?-warning-long!

[sherry7899]

I am hesitant to post about this, but since there are so many moms (and some dads!) on the board, I thought it would be a good place to get some input, since VF'ers are such helpful and kind people

I apologize for rambling

The major point of my post is to see if anyone else has gone through trying to get accommodations for a child with a learning issue, and if you have any input.

I have a twelve year old son who is currently in seventh grade. Ever since preschool, he has trouble with staying in his seat during class and talking too much. It never was a major problem until the last few months of sixth grade, which was last school year. In addition to getting up during class and talking, he was not finishing his work, which was my main concern.

I had some meetings with the school counselor, who said maybe it was ADD, but to see if he matured over the summer and we would see how it goes. I honestly did not think it was ADD, since at home he could concentrate on things for sustained periods of time (and not just video games!) which included reading books he enjoyed,and hours sorting baseball cards by team, and organizing his many cds.

From the beginning of seventh grade, his grades continued to drop, and we got the results from the standardized tests from last spring. His scores had gone down on there as well.

I asked for a meeting with the child study team at his school. I had made a long list of things I had noticed at home about his school work and other issues. I wanted to get him tested for learning disabilities. They said they felt it was not a learning issue, since he got really good grades in most of elementary school and had done very well on the standardized tests in the first few years. They said to have his pediatrician write a referral to get him evaluated for ADD.

The doctor the pediatrician's office uses for evaluations had a four month waiting list. I researched and found a neuropsychologist on my own that was in our town and was able to set up the evaluations quickly. They did three days of testing. Upon meeting with the neuropyschologist, he looked over the reports from my son's teachers (the school psychologist had several of his teachers fill them out) and a copy of the list I had made for his school meeting. He remarked to one of the post docs who was doing the testing that the information I had written up myself was the "most helpful information they had." (so if anyone here has concerns about their own child, keep looking until you get answers!).

Anyway (sorry to be so long winded-thanks for reading this far!), we had a meeting with the doctor last week who had a preliminary report. Our son does NOT have ADD-ironically, he has a really good attention span! The doctor said it was really good we did not just take the word of someone else and get him put on medication for a condition he does not have.

However, he likely has a non verbal learning disorder. I am not good at explaining it yet, but in simple terms, he learns much better through hearing than by seeing. It also affects spacial relations. The kids with this have trouble with math because it is usually done in columns, reading maps, graphs and charts, and interpreting information they have read, like making inferences from reading. They also have trouble with art work. That struck me as odd, but then I remembered my son having trouble in art class the last quarter of last year-the assignments were mainly arranging cut out pictures on paper. It is not usually caught early because these kids can be extremely verbal and have a great vocabulary. Also, as the work in school gets harder, they become frustrated and start acting up in class, which mimics signs of ADD.

They also have issues with motor skills, which I found interesting-they do fine with things that only use one side of the body at a time, but have trouble with things that use both sides of the body at once. I had said our son played baseball for four years, and was an excellent pitcher and first baseman. I did not mention that he always struggled with hitting. The doctor said, "I bet he didn't hit well, though right? They do well at pitching/throwing because that mainly uses only one side of the body at a time." Now we know why he struggled with hitting in spite of hours of practice. He also had trouble with learning to ride a bike, and gave up for several years. He tried again when he was around nine and does fine-he also now can ride a scooter and skateboard (I hate that thing!) so go figure!

We are fortunate that it has not at all affected him socially. Kids with NVLD can also have trouble making and keeping friends and have trouble getting humor and sarcasm. That is the total opposite of our son-he has a lot of friends and a very sharp and quick sense of humor. I am very thankful for that!

Anyway, the point of my long post is now we are waiting for the official report to be finished by the doctor's office. They said they will meet with the child study team at my son's school (likely after winter break). I am very glad they will be there to advocate for him. I have a good friend who is attending graduate school to become a Special Education teacher, and she recently interviewed a principal in our school district. She said she was told that they try to do as much as possible to keep kids in the public schools and help them there. When I asked the doctor about school, he had brought up a private school for kids with language based learning disorders. I am not sure how I feel about that. On one hand, it would be wonderful for him to be taught by teachers who are specifically trained, but it is a very small school.
He has been with the same kids since kindergarten, and I'd hate for him to leave all his friends. Also, I worry about him spending the rest of middle school/high school at the specialized school, and then adjusting to college, which would be a totally different atmosphere.

Thank you for any input, and I apologize for writing so much!

Sherry

[lfcjasp]

Sherry, our older daughter started kindergarten like gangbusters. She was one of the youngest and yet most advanced. First grade is when the trouble started. It wasn't til HIGH school that one dear teacher recognized her problem and showed her how to deal with it. What is really cruel is that she seemed to always get teachers with the least patience and compassion, while her younger sister got some really superior teachers

Her problem is that she catches the first and last letter of a word, but misses the whole middle...it is hard to explain. I think she has some ADD or HD something. All diagnosed once she was an adult so I don't know as much as I should. What's important is that she handles her learning disability so well and is such a sweet and loving lady who is so filled with compassion....she's an awesome person. Her sister is, too, but hasn't had to overcome all those obstacles...

Sherry, I got to rambling now myself...saying a prayer for your son. I so hope they will work with him...he's got too much on the ball for them not to!!!

[Kathy G]

Sherry,
It sounds like you're getting a handle on a solution to help your son get through this which is wonderful!

It's tough to have a child with a learning disorder. My son wasn't talking clearly enough to be understood when he was 3 1/2 years old and I asked his pediatrician about it. His reply was that he didn't think anything was wrong. I have two older children and they were both able to communicate by the time they were his age. I pursued getting him tested through a child study team as well because I wouldn't settle for waiting to see if he could talk by school age. It turned out he had a speech problem as well as learning disabilities. He received speech therapy from pre-school all the way through high school and was in special classes where there was another teacher available to help him and a couple of other children. His difficulty is following more than two to three different instructions at one time and taking tests that require him to decipher instructions. If he has help with these, he does fine on tests.

He's now 20 years old and this is still a huge issue for him. I'm trying to enroll him in a local community college but he'll have to have the special help he had all through public school. It's tough! I don't know what type of job he'll be able to do...possibly something that just takes alot of repetition. I don't know.

Sorry, didn't mean to ramble on but wanted you to know that there are plenty of us out there that have gone down your path. It's very hard to decide what to do and who to listen to as each "specialist" has his or her own opinion. I'm glad I didn't listen to the psychiatrist who evaluated him when he was 3 1/2 and told me his IQ was 70 and that he was slightly above retardation. Which would've been fine with me too, as long as the diagnosis was right! He definitely has his row to hoe in life but he's such a blessing to us. He has a heart the size of Texas and would give the shirt off his back for anyone. You won't find a sweeter guy.

Hang in there!

Kathy G

[sherry7899]

Thank you very much, Lydia! Your poor daughter! It must have been so frustrating for her, and for you and your husband as well. I knew something was going on, but it can be so hard to get the right diagnosis. I am very glad to hear your daughter is doing so well now.

My son had a good kindergarten teacher, a lousy first grade teacher (it was her last year before retirement and she really just did not care at that point! She was getting her real estate license and seemed to care more about that than teaching), absolutely fantastic second and third grade teachers....fourth and fifth grade were just okay. It seems like in middle school it was a mixture, but the middle school teachers have so many more issues, with kids going through puberty, etc. I can't imagine teaching middle school!


Hugs,
Sherry

ETA: Kathy, I did not see your response until now. Thank you for sharing your experience with your son. I really hope he can find his way and get his help at community college that he needs. I am worried about what they do for kids that need help in college as well, but I want to get him through middle school first! I am very thankful we are getting this diagnosed before he starts high school, at least.

My son had speech therapy as well, but it was from the age of three (his preschool teacher noticed that some of the other kids had trouble understanding him sometimes) through first grade. His issues were minor, so he improved quickly.

Has your son's IQ been tested since then? The doctor we saw said that once a child gets the specific help they need that their IQ can actually go up-like with my son, the sections on space relations and recognition of facial expressions should improve (another part of NVLD can be that kids have trouble recognizing facial expressions and have poor eye contact).

[shortie]

Hi Sherry,

I have two with autism (which shares some attributes with the NVLD diagnosis, although has a lot of other things it sounds like your son isn't faced with) and work with families professionally. Happy to give some ideas, but maybe too long for a post -- PM me if you'd like!

[Danielle*]

Sherry, I sent you a PM.

Danielle

[suegy3]

I wonder if Occupational Therapy would help him? Good luck.

[sherry7899]

Suegy- Thank you! The doctor did suggest occupational therapy. My friend who is getting her Masters in Special Education told me they don't usually have OT available for kids in middle school in our district (sigh..)only for kids in elementary school. I will have to discuss this with the school. My question is-if kids need it in elementary school and have been getting it, what happens to them once they get into middle/high school? I'm sure this is all due to budget cuts.

Shortie,-I will be sending you a pm-thank you so much! I have been reading about some of the similarities. The characteristic I've noticed most is sometimes a lack of eye contact, and sometimes I don't think he's reading my facial expression...though just a few days ago he teased me (gently, but I hate being teased) about something, took one look at me and said "mom, you're mad, aren't you!" I hadn't said a word, so he did recognize my angry expression. He does have a lot of friends (just had one sleep here last night) and is very empathetic towards others, though-I guess the degrees of the issues of dealing with others socially can vary.

Sherry

[Jacqi A]

Sherry, I think that middle school is a very hard time for kids - whatever underlying problems they have are often hardest to deal with at that age. It sounds like you have a diagnosis that makes sense & I'm sure you'll get him the help he needs. From what you've said, I would try to keep him in the regular school system.

[AZY]

Hi Sherry,

I can relate as I have a child with some issues as well, although they are not technically learning disabilities. I don't know what state you live in, but most are required by law to provide an appropriate education for each child, so if you want to stay in the public school system, keep being the squeaky wheel and make them provide what your son needs.

I'll also throw out another avenue that we elected to take. It's a program called 'Learning Rx'. The premise with this program is that there are multiple ways the brain processes information and the trick is to focus on areas that are weak. My daughter also had a lot of issues with spatial relationships and they did a lot of work with her in this area. It's kind of a weird-appearing system, and not a small investment of $$$ but we went through six months of intensive work, and my daughter went from a really struggling student to solid A/B work. I think it also gave her a lot more confidence in her abilities. (They start off by having them memorize the presidents forwards and backwards, which is amazingly easy apparently!) The one caveat is that these local offices are franchised, and the training is not academic. Therefore I would assume that quality could vary widely. The director of the program we used required far more time for her trainers to become certified than was actually required and our daughter had a grad student studying neuropsychology, so I think we were fortunate to find this place. Anyway, just thought I'd throw that out there as another venue to explore, if interested.

Best wishes to you, and do keep us posted. Please PM me if you have any question,
Anne Y