Gifted Issues Discussion homepage Forums Twice Exceptional Dysgraphia Difficulties

My 12 year old son got a 98 for the semester in his writing composition class, the first class he had taken except for musical theater and piano, since he was in kindergarten. He is the youngest student in the class. Most of the other kids are two years older.

We never told the teacher about the dysgraphia. He never asked for any accommodations. At the beginning of each class he had to write a paragraph in six minutes on a topic the teacher wrote on the board. He was always the last one to finish writing but he did it and always got the maximum number of points. The teacher could read his writing. Since she also makes some of her letters in an unusual way, she doesn't count off for handwriting as long as it is legible. She can't draw well either; she uses stick figures when she draws, just like my son. She studied the dictionary when she was a child, just like my son. When she gave assignment to write about the best mistake he ever made, my son wrote that the best mistake he ever made was not coloring in the lines because it was the reason he is homeschooled. He got an A+ and a "very interesting" comment on that paper, which encouraged him to write more and take risks, like writing a poem to match the tone of some work of art or music. He got a 100 on that one.

I took notes for him in the class since no electronic devices were allowed in the classroom, but he didn't read them before he took the semester exam because he was sick and didn't have time to look at them before the test, but he did well anyway. I think he did well because he reads a lot and grammar has always been easy for him. He could spell really well too. The physical act of writing was the problem because he has low muscle tone. The neurologist recently noticed that the muscles in his hands are smaller than most people's. Even with the difficulties, my son managed to do all the writing on a three page test because he was determined to do it.

I can usually hear my son writing because he presses down on the pencil harder than everyone else. I don't know if he reversed any letters on his test, something he does when he is very tired or sick, but this is an occasional glitch that he deals with. He was very tired after the test.

So it sounds like everything is going really well, right? Well, at my family's Christmas party my son had trouble reading one of the Christmas cards. He said out loud that it was written in cursive and he couldn't read it. After we left, family members discussed how my child could not read in cursive. My dad was worried about this, on top of having to take care of my disabled mother.

As a homeschool mom this kind of thing annoys me when it comes from someone else, but when it is family, it really bothers me. I had to explain to my dad that my son, because of his dysgraphia, tried both printing and cursive and I let him choose the method that was easiest and fastest for him. We ended up modifying the cursive. I let him use printed capitals when he had trouble with some of the cursive capitals, but he still decided to stick with printing and it is working for him. I get the feeling that my dad still thinks this might be a problem because he said this was not how he learned to write in school. I told him I thought it was a reasonable accommodation for the disability. I checked to see if my son had forgotten how to read in cursive and he can read it just fine, if it is legible. My son is not the only person in my family with bad handwriting.

I don't think it's an issue, personally. I don't think cursive should even be taught in school; I think it's a big waste of time, and few people I know as adults use cursive. Everything I've read says that as long as a child learns one method of writing well, it's sufficient.

I would ignore them. I'm a grown up and I can read cursive but I can't write it. It takes me forever to scratch out a sentence.

Just curious, does your son form his letters differently than most people? I thought my son just had terrible handwriting but instead of starting his letters at the top like most people would, he begins them all in different places. It takes him a really long time to write and his writing is super sloppy.

One thing about anxiety Lori is that it if it isn't dealt with it has a way of continuing to float around looking for new targets. It seems like at first you were worried that your son had dyspraxia, but it turns out he doesn't. You worried his hypotonia would prevent him from being able to do anything but he does musical theater. You worried he couldn't handle the scoliosis brace but he has. Then you were sure he had such significant handwriting problems that he course would be a disaster and no one would understand or help him. And, then he got an A+. Maybe instead of finding new landing spots for worry it would make sense to instead take time to reassess.

Even though he's never taken a class since kindergarten he got an A+.

He kept up so well nobody noticed if he had problems.

He was able to complete timed work.

His endurance got better.

He did things you didn't believe he could.

Nobody was mean to him.

It turns out if his muscles are smaller that really isn't significant enough to get the job done.

He showed he's capable of working hard.

Your son is 12 years old. If he wants to learn to read cursive he will. For many kids who didn't grow up writing cursive it is a learned skill. Our son noted at some point that he wasn't able to do it and I suggested he would with practice. And, he did. If he hadn't, no biggie.

If this is seriously posing a level of stress in a person caring for a disabled individual I'm going to suggest that isn't really about the cursive.

Thank you. This was the support I needed and I passed your comment on to my dad. My dad was really worried that my son would be at a "disadvantage" in life if he could not read cursive even after I explained that my son chooses to print and might have a little more difficulty reading it because he hasn't written in cursive for several years. He can still read my cursive if I take time to write it legibly. I am not going to have him waste time on this.

It turns out that my niece told my sister that her cousin said he couldn't read the cursive on one of the Christmas cards and my sister, who was never supportive of our homeschooling and sent her kids to the local public school, spread the rumor that my son could not read cursive at all and that I was not teaching him everything he needed to know.

When I told my adult daughter I was just going to ignore my family's comments and continue doing what I had been doing, she immediately sent a texted tongue-lashing to her cousin and told her if she was so concerned that her little brother didn't know something he needed to know, she should discuss it with us instead of talking to all the rest of the family behind our backs.

My family is very judgmental and they love to gossip. With the exception of my dad and maybe my uncle, they thought I should have kept my son in the public school that refuses to provide an appropriate education to twice-exceptional kids. There is no support for kids like mine who want to learn but because of a mild disability cannot do sports.

It isn't just my family. Education is not a priority here. The majority of the people in town recently voted down a library again. They don't feel we need it because we can drive 20 miles and pay to use another town's library. All they need is football. They believe they have a good school because all their kids are on the honor roll (almost every child in every class is) and when they get to college they need remedial classes. A relative of mine got a football scholarship and made straight A's at that school but is not doing well in college because he never liked to read. So we can't talk about anything related to education with our family and I don't want to talk about football. We don't know what movies are considered bad by the church they go to so we are afraid to talk about any movies we see or even books we read. They won't go to any of my son's musical theater performances but they all go to see the football games and talk about how good the cousins are in football.

My very perceptive adult daughter feels that she is being judged every time she is around our family. She says that is okay, she can handle it, but she will not tolerate this kind of thing toward her little brother. She and her little brother are very good friends. I am happy about that.

OMG Lori, you live in my town!

My son was diagnosed with dyspraxia and I thought it might be a misdiagnosis because the low muscle tone seemed to be the cause of every difficulty. He is not clumsy and his timing is good unless he has a migraine. The neurologist said most people with dyspraxia have more problems than he has, so my son has been going through tests to try to determine the cause of the hypotonia without doing a muscle biopsy. One of the tests involved long needles inserted into the muscles. My son got through it. I got through it. Neither one of us had a migraine that day. I think we at least proved that stress is not a trigger for our migraines. I think it is totally normal to have some anxiety about this. Hypotonia can be a symptom of a lot of scary things that can be progressive and when you add in scoliosis it gets scarier.

My son has read enough about all of this that he wanted to make sure he didn't have something like central core myopathy which could cause severe problems and possibly be fatal if he had general anesthesia. My son knew if the scoliosis brace didn't work he would have to have surgery so he wants to know the cause of his hypotonia.

I have almost every morning for years looking for answers. My husband and I watched a recent episode of Mystery Diagnosis where a woman did what I have been doing and she found answers and her daughter is doing better now. She looked for answers for about five years, going to lots of doctors before she got answers and help for her daughter. I am sure she had anxiety when her daughter was in pain from frequent headaches. She did not need neurocognitive behavioral therapy for anxiety. She needed answers and she did finally get the help her daughter needed.

My son did well in his classes even with all the doctor visits and the frequent migraines and the pain from the scoliosis brace which does still make life harder for him. He used to be sensitive to clothing tags, so it is understandable that he would have more trouble with it than most people. I let him take it off for class when the pain is too distracting but I keep track of the time he is in the brace so he can make up the time later. The frequent migraines and continuing problems with the brace are the reason I stay in the back of the classes he is in as a parent volunteer and it is working well.

I agree with this approximately 50%. (I once had a social worker look at me and say, "I can't help you with your anxiety, because your problems are real.") Yes, there are kinds of anxiety-- probably most kinds-- that are not pathological and come from situations and experiences where anxiety is justified.

AND YET-- could that mom have benefited from something like cognitive-behavior therapy for her anxiety? I would bet yes.

Scientists are increasingly finding that parents who survive serious traumatic events regarding their children-- which can include life-threatening illnesses, long term disabilities, and the like-- have post traumatic stress symptoms. This can be totally disabling. Even if the anxiety is all for the right reasons. And treating it can make things better for the child as well as the parent.

My two cents.
DeeDee

Yes, exactly. Also, the way the trauma is experienced is going to be affected by make up of the person and the life events they already had before that trauma. If you have a sensitive disposition, have anxiety in your family or if you experienced difficult childhood events, you may be more wired to experience these traumatic events on a physical level.

Lori it seems like you are misunderstanding anxiety and feeling it only requires treatment if the person has a stress free life. The reality is that there is an incredibly powerful connection between the mind and the body. When a person experiences difficult life events that can play out in a wide variety of physical ailments - autoimmune problems, headaches, high blood pressure, sleep problems, etc. Also, anxiety is a process once started in the mind and body doesn't just stop. If magically your son got a diagnosis tomorrow it wouldn't erase the entire life history the two of you have together. It won't erase your mistrust of other people. It won't make you feel secure that he can have independent experiences. You would still find things to be concerned about because that's how anxiety works.

While I in no way discount it is tough for your kid to have low muscle tone and wear a scoliosis brace, these are events that many experience without having the level of upset you are voicing. It seems clear that some stuff like taking a homeschooling class, getting medical tests, not reading cursive, are upsetting to you on a level that is out of proportion - which is of course very common for anxiety.

While no therapist can magically erase difficult life events they can help a person find coping mechanisms that work.
I worked with a therapist who works with many parents of kids with serious disabilities and families going through traumatic events (loss of a parent, life threatening cancers, etc.) The help I received helped me protect my health and be more constructive I approached the many stressors we are experiencing. Also, most importantly, it helped me find a way to keep these worries in perspective and spend more of the time I have with my family in a place of happiness.

Re: The Mystery Diagnosis mom. I would be mindful Lori that most likely you are NOT going to find answers. Most hypotonia doesn't have an explanation and if it hasn't been diagnosed by age 12 the chance of finding answers is even smaller. Personally I would still find testing worthwhile, but I would go into it aware of the limited likelihood of finding a specific diagnosis. It is unfortunate, but reality, that a lot of kids just have a lot of minor stuff wrong with them. The most productive approach is going to end up focusing on work, therapy, perseverance, positive attitude, and acceptance.

And, even if today they could give you an exact name for what he has that isn't going to change the reality that he's got a variety of mild disabilities that he will have to take responsibility for and deal with. It won't solve the fact that at 12 he's at the place where he is developmentally. It won't erase the difficult stuff he's experienced or give him better coping mechanisms for handling his pain. And, based on what you've posted I would be mindful that another diagnosis may feel like further discouragement to you and may cause you to further doubt his ability to try new things and be successful.

I'm wondering what form this looking has been taking. It strikes me that age 12 he's not had any of what most of what kids with hypotonia usually have. By age 12 most kids would have been in therapy for over ten years. And, he's just now getting the sort of medical workup typically done very early in life.

Only a small fraction of kids with mild hypotonia like he has ever get a diagnosis. And, even at that the "answer" tends to be the same as for kids who don't get a diagnosis. The answer is: therapy, hard work, setting realistic goals, clean diet, supplements, stress reduction, positive thinking, sleep, and building strength. This may not be the most inspiring or gratifying answer because it isn't perfect and it doesn't erase all the problems. But, it does offer the prospect of living a good life.


When do you think he will be capable of spending an hour in a class without you? How will you know he's capable if he doesn't try it? It seems you were really skeptical of his ability to handle a lot of parts of this class and he proved you wrong.

My son didn't get any of the usual tests until much later because pediatricians we saw at the military base told us it wasn't necessary and we could not get the necessary referrals.

When my son was one year old he was tested by a therapist with Sooner Care, which was free, and we were told he had a 50% delay in motor skills but was 50% advanced in receptive and expressive language. They required a permission slip to be signed by his pediatrician at the base before they could give him therapy. The pediatrician refused to sign it and sent us to a neurologist who looked at my son for 10 minutes and said it wasn't CP but possibly a mild myopathy and we would have to wait to see a specialist for that, but there was a long waiting list and we didn't get to see the specialist. My son started walking at 18 1/2 months so his pediatrician felt that he didn't need to see anyone else.

The pediatricians at the base told us the mild hypotonia wasn't anything for us to worry about and they focused more on how bright he was at all of his checkups, as if a child could not be both bright and have a physical problem that required therapy.

When my son was in kindergarten we explained to the teacher that he had low muscle tone and fatigued more quickly than other children and even though he read at a fifth grade level and could do some mental math, she felt he needed an extra year to develop his motor skills if he couldn't learn to color in the lines better. My child was not eligible for OT at the school for his disability because he was academically advanced. This was confirmed by our state department of education when I called to complain. So my son could not get OT through our insurance because we couldn't get a referral and he couldn't get it at school. At the same time this was going on my husband was diagnosed with cancer and he was given a 50% chance of survival. Our co-pays for my husband's cancer treatments ate up our savings. What were we supposed to do?

When the school told us to homeschool I felt I had no choice and I did the best I could do even though I was worried about my husband and was sometimes responsible for watching my severely disabled mother, who lives next door and was being taken care of by my dad because nursing home care is over $50,000 a year. So add to all those worries, the total fear of ending up like my mother if I ever had to have surgery. Then add the fear of cancer that I developed when my husband went through painful radiation therapy. Yes I had anxiety and I could probably have used some kind of help for anxiety then, but I could not afford any more co-pays.

Luckily, my son was learning so much on his own that I didn't have to do much with him academically, except for trying to figure out how to deal with the dysgraphia and once he was typing well it wasn't as much of a problem except for writing out math problems. My son got very good at doing mental math because of his dysgraphia. He developed strengths that I don't have because of this disability. He does most of his math on the computer and only writes what he absolutely has to. A few days ago he was working on improving his speed in answering math word problems and I saw that he could read and answer 7th grade math word problems on IXL faster than I could even read them. If I don't make him write out the problems and leave him alone to do it his way he is very good at math and even fast and accurate. Writing was always the problem and I think he can work around it. I am not so worried about that any more.

His reading and comprehension is at a college level and he can write very well if allowed to type and he has a very nice voice and can act and he is a great kid who at the moment is dealing with a lot of headache and back pain. I think we may be close to having a diagnosis.

What diagnosis? How do you think it will change things for you and for you?