About my neighbor's daughter

She sounds like she has low muscle tone to me. If so, OT could help. Has she ever had a complete evaluation by a Neurospychologist or a develpmental pediatrician. It sounds like there are lots of things going on there, more than the handwriting.

Beth

Beth, she has never had a complete evaluation by any doctor and I seriously doubt that will ever happen. I have an appointment to take my son for an OT eval. and I can try to persuade them to take her but I’m not holding out much hope for that.

She comes over every day to do therapy. I’m doing all my son’s therapy with her plus whatever else I can figure out for myself. We are going to start Reading Reflex today. I really want to figure out some way to help her with her writing and reading before school starts.

Today I mentioned to her grandmother that Audiblox might really help and that it only costs about $150. She let out a huge exclamation over the cost and I was offering to pay half and do the exercises with her.

Sharon

Any suggestions about how to work in the low tone issue would be welcomed.

We are trying Beth’s headstand. Big imphasis on the trying.

Sharon

Sharon,
I am concerned about this child. When reading your post it occurred to me that she may have some medical condition that needs attention. I googled in “loose joints” + low muscle tone” and hit osteogenesis imperfecta and Ehlers Danlos—two relatively rare genetic diseases that people within my family circle have. Also something called Costello syndrome. You might do a quick check of these and see if the child fits other symptoms of these disorders. (Severe cases of these illnesses are pretty unmistakeable, if the doctor knows about them. However, for OI, at least in my quick read, mild cases may not be diagnosed until adolescence or adulthood.)

I am hoping the parents have medical insurance. Surely, if they do they would be willing to check out if she has a serious medical condition with a knowledgeable doctor. These conditions all can entail longer term consequences to heart, bones etc. that need to be addressed. You need a very knowledgeable doctor—I had a niece with very caring and educated parents who had countless trips to emergency rooms all over the country (the company the father worked for transferred him a lot) before an intellectually curious country doctor in Louisiana dxed Ehlers Danlos and had it confirmed with a specialist.

I would imagine that if she has one of these conditions many insurance plans would cover the physical/occupational therapy that could help this child.

***osteogenesis imperfecta and Ehlers Danlos and Costello syndrome***

I read the symptoms and signs of these and I don’t think any of them fit. Thank God! Other than allergies, asthma and a weak immune system, she is healthy and has never had any injuries or wounds. I believe her immune system is poor because she constantly drinks Koolaid (NEVER water) and eats corn dogs and spaghetti O’s. She is overweight and absolutely beautiful.

When I say she has loose joints, what I mean is that some people would say she is double jointed. If she straightens her arm, it will actually bend the wrong way at the elbow. I’ve seen other people like this.

Her parents do have insurance. After my son’s visit for the OT eval, maybe I can convince them to take her for an OT eval.

Sharon

Does this child attend a public school? If so, she should be able to receive speech therapy and possibly OT through the school district. Even if she attends private school or is homeschooled, the local public district can be expected to provide some of the services she needs. If $ is what the parents are really worried about (though it may be more an issue of denial that there is anything “wrong” with their child) perhaps you can convince them to request an eval. through the school since it will cost them nothing. Sure, the school may offer only the most basic of services, but better than nothing!

***Does this child attend a public school?***

She does indeed go to public school BUT, in K they told her parents that she didn’t qualify for speech therapy (although she uttered not one understandable word)! Then, at the end of the year, the school wanted to retain her in K because of her speech problem. Huh?

The little girl told me that she was having “hand therapy” once a week in school. She needs it more often.

I have explained to her parents that the school is required to serve her. I also told them that I would attend her IEP meetings as her advocate. I don’t know if that will happen. I’m going to really push for at least that!

The thing about public schools is that they will work very hard NOT to serve these children because it costs them extra money.

I worked with her on reading today and I feel encouraged. I know I can teach her to read and that will be something. The handwriting issue is another matter. We worked on Magic C again today. OH how I wish I knew what to do for her!

I will work with her along with my son every day until she has to go to school.

Thanks for your reply.

Sharon

I don’t know much about low muscle tone, except that it can be part of medical conditions. My nephew who has Down’s syndrome has it. That’s why my gut is worried, like Marie, that there is something more going on here.

Perhaps the parents are still in denial—although it is hard for me to understand how you could have an 8 year old child who doesn’t know how to read or write and think everything will just be allright.

She is very lucky to have you as a neighbor.

There is a program called Callirobics which teaches prewriting skills set to music that might be helpful. My youngest K teacher used it in the classroom and said it helped about 1/2 her problem writers. This wasn’t the lowest level though—which is what I would think she would need. I suspect though that the low muscle tone is making the handwriting really difficult. I know that an OT exercise is to play with play dough and to hunt for buttons in it. There also are special scissors which build up muscles—I think they are called alligator, although I may be wrong. My nephew uses them, I know.

My son has had OT through the school. Once a week is pretty typical, I’m afraid. But we’ve done a lot privately, so I figure what they do is only frosting.

Beth

***I don’t know much about low muscle tone***

Well, I don’t either so maybe I’m using the wrong term. I looked her over really well yesterday. She is starting to get some muscle tone in her legs since she has been coming over the last 2+ weeks. I have been working her pretty hard. I don’t think she has any serious medical problems but I’ll keep an eye on her. She would be content to lie about on the sofa and watch TV ALL DAY if given the opportunity and her diet is lousy—Kool-Aide, corn dogs, Spaghetti O’s, Pop Tarts, she never EVER drinks any water!

***Perhaps the parents are still in denial***

No doubt about that. Also they just don’t know what to do and are not inclined to spend much money finding solutions. I live pretty far out in the country where people are a little backward and ignorance abounds. The schools here are pathetic.

***There is a program called Callirobics***

This looks perfect for her! I think she would ENJOY doing this. I have already purchased materials from Handwriting Without Tears for her at my own expense and I have no income right now. All I can do is give this information to her parents and hope… Maybe I can develop something similar on my own.

I’ll try the play dough idea. I really think she needs that kind of thing, and lots of it, before she even attempts to write but then she starts 3rd grade in August!

I think I can get her reading on a 2nd or 3rd grade level before she starts school and that will be something. I

Thanks for your ideas! They’re much appreciated.

Sharon

This is low tone. My friends son has this. Low tone is more the field of physical therapy than OT although an OT can help. Sounds like she could use both.OT is fine motor and PT is gross motor. Does she suffer fatigue? That is another sign of low tone.

My friend is a sensory integration PT who worked with these types of kids before she retired to be a mom. I asked her about this recently because of another friend whose son has this.

She told me that this is one of the hardest problems she had to deal with. She said that activities that allow for sudden impact giving quick input to the brain and requiring a quick response help. She thought tennis was an excellent activity.

You may also want to look up apraxia or dyspraxia.

Just so you know. Motor problems are MEDICAL, meaning they should be covered by insurance. Insurance companies shy away from covering learning or what are termed developmental problems. Therapy for this really should be covered. Any OT or PT worth their salt should be able to code it correctly to get coverage. It may require an MD referral which shouldn’t be too hard to get.

Just so you know my other friend’s son who has this is doing really well. He received vision therapy very young and gets ot in school. He still has a little problem with fatigue and writing but overall he does well in school. Just getting glasses made a tremendous difference for him.

It is really frustrating when you come across a kid who you know needs help and the family is just not on board.

***This is low tone***

Linda, thank you! Even though I know very little about it I thought it must be low tone because of the speech problem she had. It was due to underdeveloped muscles in her tongue and jaw. But I’m pretty sure she doesn’t have any serious medical problems.

***Does she suffer fatigue?***

She always seems tired and yawns a lot. I make her do all the vision therapy exercises plus more and make her jump on the mini trampoline.

What causes low tone? Will regular exercise improve things for her? I ordered the book you recommended in some other post, Integrating Brain, Mind and Body through Movement. Maybe that will help her.

***She said that activities that allow for sudden impact giving quick input to the brain and requiring a quick response help. She thought tennis was an excellent activity.***

Tennis is definitely out! She couldn’t even begin to do that right now. Besides I live in the boonies. People here don’t even consider tennis a sport.

Thanks for all the info.

Sharon

I think you could accomplish alot with vision therapy and phonographix. I also love the integrating through movement book.

The trampoline is sudden impact so I could see that helping.

I don’t know what causes low tone. She may always be low tone but that doesn’t mean she can’t achieve academic success. I have often thought that Bill Gates looked a little like he had low tone.

This girl is lucky to have you!

>> Even though I know very little about it I thought it must be low tone because of the speech problem she had. It was due to underdeveloped muscles in her tongue and jaw. But I’m pretty sure she doesn’t have any serious medical problems. <<

This may be more than you want to know, but there is a book (and therapy equipment to go along with the book) that details how to develop specific muscles for speech clarity. The book is “Oral-Motor Therapy for Speech Clarity” by Sara Rosenfeld-Johnson. Website with information is http://www.oromotorsp.com

I have this book and it is *excellent*. It provides step-by-step procedures for working on specific problems. Some of the tools used include graduated horns and graduated straws to develop muscles. If you are interested in this, I would try to get the book through interlibrary loan first. If you want to use the therapeutic approach detailed in this book, I would advise waiting until you have the book before deciding on which tools to purchase (because these can add up in cost pretty quickly).

Although the book is written for speech therapists to use in their practice, the book is so detailed and so good, it would be rather easy to implement in a home by someone not trained in speech therapy.

Nancy

You are an angel, Sharon! I hope they are paying you for your time and energy spent helping their child, though.

But I’m going to have to say that there is a fine line between ignorance and neglect, and these parents need to get this child evaluated by a developmental pediatrician and/or neuropsychologist. We can sit here and diagnose all we want, but we are really not qualified. She needs professional evaluation first and then decide on the therapies.

Janis

Nancy, she has had some speech therapy that’s how her parents found out about the underdeveloped muscles in her tongue and jow. Her speech is much better although, in my opinion, she needs more therapy.

But I’m not going to worry about her speech. I just want to help her reading and writing.

Sharon

No, I’m not getting paid. I’m going to learn how to use the Phono-Graphix program by teaching her to read. If I’m successful, and I think I will be, her family will send other students my way. I hope to get certified by Read America eventually. Also, these people are my neighbors and they have done me many favors.

***We can sit here and diagnose all we want, but we are really not qualified. She needs professional evaluation first and then decide on the therapies.***

That is very true and I spoke with her mother this weekend. I assured her that insurance would pay for on OT eval so she said she would take her. I am relieved! But, in the meantime I would hate to just ignore her problems. I feel like anything I do to help will not be wasted. By educating myself on the possible problem areas and the remedies available to help solve those problems, I can present a better case to her parents

Sharon

Sharon,

Have you read “A Mind at a Time” by Mel Levine? I think it is a great book which describes almost every possible disprder that can effect learning. It does not go into remediation, but it is excellent in helping us recognize symptoms of various disorders.

Janis

***Have you read “A Mind at a Time” by Mel Levine?***

Janis, I’m working on it. :-) It’s not the easiest book I’ve ever read.

I also have All Kinds of Minds to read to this little girl and my son.

Sharon

Sharon, believe me, I had to reread every single page to absorb the massive amount of material in that book!!!

Janis

[quote=”Janis”]Sharon, believe me, I had to reread every single page to absorb the massive amount of material in that book!!!

Janis[/quote]

Thanks for telling me that. I was beginning to feel dense but I feel better now. As I read it, I’m taking notes to help me absorb.

If I ever sell my place, I think I will take my son to be evaluated at Dr. Levine’s clinic.

Sharon

Lol! I have no idea how much it costs, although, they may find a way to file it on insurance since you have a develepmental pediatrician involved. Although I’m sure Dr. Levine is probably not personally involved very often now. He has too many speaking engagements!

But it would be lovely to have children tested there. He has such a wonderful way of affirming their value and strengths while also identifying the root problem. I live about three hours from there, but I guess I feel like my child’s issues are manageable so I haven’t pursued that option.

Janis

Here’s a link to a message from a woman who took her child to Dr. Levine.

http://www.welltrainedmind.com/spneeds1/messages/1507.html

I simply like to hear someone talk about my son’s strengths. Sometimes I have a hard time focusing on his strengths. :)

That was very interesting, Sharon. I had wondered how much an evaluation there costs. I’m sure it is worth it in hard to diagnose cases. But I don’t think we’ll be heading that way, as much as I love Dr. L’s books!

Janis