posted
Help me - I'm starting to lose sleep over the start of school.
I'll try to keep background as brief as possible. My five year old son Daniel has global hypotonia due to a genetic tissue disorder that is a permanent condition.
As an infant he had developmental delays in fine and gross motor skills, and speech. Received therapy through Early Intervention, and caught up completely in speech and is almost age-level in gross motor skills - only a physical therapist or developmental specialist would likely notice the gross delays. His condition does not affect his mind in any way - he is a normal five year old cognitively.
It's the fine motor skills that are a problem. I've spent all summer working on his grip with him, and he knows how to do a normal tripod grip on a pencil or crayon but once he gets frustrated he tries to revert to a transpalmar grip
He's behind in drawing and writing, can't make any letters or numbers yet that are legible. He also recognizes that he's behind, and when I'm working with him and his sister he gets very aggravated when Abigail can do things he can't.
If we're just talking about things or asking questions he's sharp as a tack. Nothing wrong with his brain at all - mentally he's more than ready for kindergarten, but his hands aren't.
Already tried to receive additional occupational therapy through the school - not gonna happen. I've pursued it as far as I can, and the school can't give him therapy because he doesn't qualify for it under the Individuals with Disabilities Education Act that governs what federal funds pay for these things. Daniel is not "disabled" and under their guidelines he would have to have additional delays in order to receive OT, and since his speech and his mobility are all normal, he doesn't qualify.
Teachers - what should I do when I meet with his kindergarten teacher? I was planning on sitting down with her in a conference early in the school year (as soon as she'll meet with me - first week if I can) and giving her all the background and the information on hypotonia so she knows what's up. I'd like to ask her if I can get weekly information on how he's doing, and what they're working on so I can work with him at home and if I do get some OT visits approved through my health insurance so his therapist can work on them too. I know he's not the only kid in her class and I know she has probably 20 other sets of parents to deal with - do you think it's too much to ask of her that she either talk to me once a week or send me notes home or emails about his progress? Considering the situation, should I maybe meet with her once a month face to face in a conference?
My biggest fear is that he will feel inadequate, and think he's stupid because he's behind. My therapist assured me that most kids with hypotonia eventually get to a point where they can keep up with their classmates but it's normal for them to lag behind in things like handwriting for a while. She said most high school students with hypotonia are at a point where only a therapist or specialist would notice there is anything wrong with them at all. But the early elementary years can be a struggle.
So far all my kids love learning and love school. Daniel wants to go to school, and is excited about learning to read - he's a bookworm already, he usually falls asleep with four or five books in the bed with him, because he looks through them and makes up stories before he falls asleep. But if he's teased a lot and feels like he can't do what other kids do, then school could be a big problem for him. And I really, really don't want that.
[ August 09, 2005, 10:34 PM: Message edited by: Belle ]
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posted
I am so deeply sorry for your child's condition and I hope the best for him, frankly I suspect that the school is doing the usual beaurocratic cover-my-but act it seems absolutely wrong for the school to deny treatment under their interpretation of that disabilities act. I wish I knew how to help, I'm only a college student.
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Have you looked into an educational advocate? My brother is dysgraphic, my mom's insurance maxed out on the OT, and she couldn't afford more. She pushed for the school to give it to him, but he "didn't qualify". She fought for two years-- then got an educational advocate, who got them to pay for it in less than one. And because they were in the wrong, they had to pay for the advocate's fees.
I'd like to see the wording of the law, because I think your son most definitely does qualify.
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I don't know anything about kids or kindergarten teachers. But from when you've posted this problem in the past year I've been wondering why you don't just hire OT once a week or periodically. It's too bad the school won't help and your insurance won't help out more but this is your child. If you think he needs it especially during the next 1-2 years, go for it! I've had other adult patients do that.
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posted
I'll see if I can entice my wife to read this and post a reply. She has a masters degree in special education and has been in the regular class room for 10 yrs teaching 2nd grade.
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posted
As a teacher, I would be grateful for the information. Anything that parents can tell me about their children, including what helps them to learn best, is valuable. As for passing information home, that would depend on the school. At the school that I will be teaching at, which is a secondary school, we use students' planners to communicate with their parents - all homework and short comments are written in the planners and parents have to sign them to show that they have read the pages for that week. That won't happen in kindergarten, I assume, but there should be formal or semi-formal channels for communicating with parents. One way in which you might be able to work it is to see if the school likes/invites parental help in the classroom. It might be worth offering to be a classroom assistant for half a day a week - I know a lot of primary schools love having parents on board as an extra pair of hands. The benefits for you are that you'd have a closer relationship with Daniel's teacher and the school more generally, and that you will be able to see for yourself how he is in the classroom. Might that work?
(Edit for random letters that got in by mistake)
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Theca, we are going to be getting therapy, we decided that even if we had to pay for it ourselves we would. I'm waiting now to get all the scheduling taken care of, to figure out when is the best day and time to set it up so no one misses any school.
It's just very hard, it's not cheap. One of the reasons I dropped a couple classes I was planning on taking this fall semester was so we could have more money available for OT.
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posted
Do you think it would be a problem if I took him to OT at the first available appointment and then to the school - he would miss a few hours once a week, is that going to be a problem with the school do you think?
I've already tried to schedule therapy for after school and it's not possible. I can't get to the clinic before four, and they take their last patient at 3:30.
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I don't know that I have any answers, but I want you to know that I feel for you. I think you know about the similar issues I am going through with my daughters.
My daughters' teachers seem to be able to communicate with us on a regular basis. I hope not to get jumped on if I'm wrong here, but this seems to be much more doable for elementary school teachers because they may have twenty or thirty students that they see all day, but not 100 or 200 students, where this kind of regular communication would be impossible. Both of our kids' teachers, for instance, sent home a note each day with either a happy, sad, or in-between face for the morning, midday, and afternoon, along with up to a one sentence description of their behavior. They also communicated with us a lot when we picked the girls up from school at the end of the day.
I think you should definitely give the teacher whatever background information you have. I don't know that I would ask for some specific level of communication, since it's hard to know in advance what will be reasonable for the teacher, but maybe you could simply ask the teacher what s/he can do in the way of keeping in touch with you, and maybe the teacher him- or herself will make an offer that seems reasonable.
I would also recommend that you not be afraid to push for a different teacher if things don't seem to be going well and you believe the teacher is not meeting his needs. Mango's first kindergarten teacher was not a good fit, and we were slow to realize this . . . and I think the time spent with this lady was damaging to Mango. Because we are both teachers and have seen many instances when parents seem to simply want to pick their kids' teachers, we were determined to be "better" than this, but I think it's different in kindergarten, when a child is having his or her first taste of school, and I think we did Mango a disservice by forcing her to tolerate a bad situation for too long.
You know, it seems to me I had a third point I wanted to make, but it has slipped my mind . . . oh well, maybe later it'll come to me.
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From the point of view of the child's feelings, I wouldn't worry as much as you are. Encourage him if he feels frustrated and help him as much as you can, but he's only five. Many five year olds cannot write simply because they have not learnt! Many cannot hold a pencil because they haven't learnt- some people never learn to hold a pencil the 'correct' way.
He sounds like a wonderfully smart boy and I'm sure that even if things like holding and guiding a pencil come harder to him that he will overcome them and, with your help, still maintain the love of school that is so important .
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Ooh, I remember now. Find out if your son's kindergarten will have "specials," or "electives." We have found that specials are where most of our problems arise. Specials teachers are like middle school teachers in that they teach a much larger number of students. We have found that they typically were uninformed of our girls' IEPs and did not follow them. They also are less likely to give you the feedback you desire--or at least less likely to give it to you without you following up on it. They really seemed to be the loophole at the girls' school . . . . all of us forgot to account for them. Don't count on the teacher or administration to pass your concerns along to the specials teachers; do it yourself, and do your best to keep that particular line of communication open.
I can't tell you how many otherwise perfect days for Mango or Banana have been ruined at art or Spanish or PE. (Mostly art and Spanish.)
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posted
Belle - Hi, I'm Cheri, Punwit's wife. I have taught for 26 years, 18 of them in Special Education - Elementary Learning Disabilities. I don't know what state you are in, I'm in Kansas. If you have gone thru the channels and have been told Daniel does not qualify - I doubt if there's much else you can do. If you do try to push it with the system and get support, try not to be overbearing and demanding - teachers work better with the attitude of "we're all in this together for the sake of Daniel".
In Kansas we have what we call a 504 plan - it is like an IEP (individual educational plan for SPED) but it is done thru the regular ed. You can ask about something like that - it might help facilitate things.
I would highly recommend sitting down with the teacher - taking any info you have on hypotonia - and just informing her/him where Daniel is skill wise, fine motor wise, the prognosis, etc. I love having all this information at the beginning of school - the sooner the better. The teacher should be glad to work with you. The suggestion of staying in touch once a week whether by a short note that Daniel takes home, or by email, is a good idea that the teacher should be able to handle. You and the teacher will decide if there is a need to meet anytimes other than the usual Parent/Teacher conferences.
Do you have a choice of Kindergarten teachers? Sometimes talking with other parents you can get a feel for the teacher that might work with Daniel better than another. Be honest with the teacher with your concerns - the self esteem issue. The teacher really controls the attitude of the class and how they interact with each other. If she/he is positive and encouraging with the attitude that everyone is different and does things at different speeds, etc., Daniel should be fine.
You have to realize that Daniel will NOT be the only child with special issues! There will be kids that also can't write well, who aren't as quick thinkers, who still wet their pants at times, who are bullies...there are endless issues that make up a classroom that just might make Daniel not so self conscious about his 'problem'. If you are anxious about it, Daniel will pick up on that.
Classroom interventions might include: use of a laptop or computer in the room until he is more able to form the letters, writing larger with a crayon instead of a pencil, or even being able to use a small wipeboard (white board) and marker. Will there be an adult helper in the room besides the teacher? They could help monitor Daniel's writing. There will be other students who probably don't have great fine motor control, too. Just keep praising Daniel's progress, as I'm sure you already do!
Home ideas: cutting - draw lines with a thick marker and see if he can cut within that width of the line, then gradually decrease the thickness of the line, and add curves when he is ready. Pick up small objects and put them in a dish - pennies (and he gets to keep them??!!), paper clips, small beads, things like that. Make games out if it. Tracing letters or shapes you have drawn with a marker. These might all be things your therapist has you do already.
Good luck! If you have any more questions or concerns I'll be glad to try to help!
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posted
When I was little I meet with my kindergarten teacher - and most of my elementary teachers as well - before school started. The teachers liked it because they'd get a chance to talk to the parent and kid one-on-one and get any info on any special issues or the kid's personality before the classroom - exactly the type of things you'd like to go over with Daniel's teacher.
I remember I liked it a lot as well, since I could meet the teacher beforehand and see the classroom with all the things on the walls before there were a bunch of new kids to meet - with my mom or dad along for a bit of security. I even got to pick out my new cubby!
You might see if you can drop by for half an hour or so before school starts. In my district, at least, all the teachers were on campus getting their classrooms set up. Try asking the school office about it.
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quote:You have to realize that Daniel will NOT be the only child with special issues! There will be kids that also can't write well, who aren't as quick thinkers, who still wet their pants at times, who are bullies...there are endless issues that make up a classroom that just might make Daniel not so self conscious about his 'problem'. If you are anxious about it, Daniel will pick up on that.
Well said, Cheri.
I've been reading a lot of child development books lately and one of them did a particularly good job addressing it (How to Mother a Successful Daughter : A Practical Guide to Empowering Girls from Birth to Eighteen by Nicky Marone - not all of it is daughter-specific). She mentions that every child will have weaknesses and strengths and that it's important for parents to make sure that children don't let themselves be defeated by their weaknesses before they really try to overcome them (as in, "I'm no good at math, so I don't want to take Algebra," etc.) If Daniel does get upset about his writing, you might have a conversation that goes something like this (I'm modeling after sample conversations in Marone's book):
Daniel: I don't want to go to school anymore. Everyone else is better at writing than I am. Belle: I understand how frustrating it is to struggle with your writing. I struggled with [insert something that gave you trouble - learning a new computer program, etc.] and I got frustrated too. But I finally learned it and I was glad to have a new computer skill. Daniel: Yeah, but everyone else is better than I am. Belle: Maybe so, but you're the top reader in your class. And you learned the school song faster than everyone else. Everyone learns to do things at a different rate and that's okay. Daniel: That's true. You're right, Mom. You're the best mother in the world. I'm going to go clean my room and take out the trash without you having to ask me.
Obviously that's an overly-simplified example, but a conversation along those lines will make a big difference. When I was at the Y, I never allowed a child to say "I'm stupid" or "I'll never get this, so I may as well not try" when they were struggling with homework. Since I knew these kids, I could say things like, "Remember when you finished making those model planes before everyone else? Sometimes it takes people longer to master a skill or a concept, but it doesn't make them stupid. And think of how much fun they would have missed out on if they had quit."
Also, letting kids know that you struggled with something will make them feel better about their struggle.
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posted
As a teacher myself, I couldn't have said it better than Cheri.
I worked in a first/second grade combined class and there was a wide margin of skill when it came to handwriting. We parents sometimes worry too much about comparing our children with others...when kids are often too busy worried about themselves to notice. Cheri's suggestions on finding alternate skills that can highlight your son's strengths will help a great deal. He might struggle in one area but excel in another--so HE can mentor a child struggling in a different discipline.
Also good to interview teachers until you find one that will meet your needs. You have that right. My son has ADD and his teachers have always been willing to provide daily and weekly reports on his classroom behavior, helping us in his treatment and guidance.
posted
Christopher has always had trouble with his fine motor skills. He's just got a little 'lag'. The teacher had him tested with the OT lady, and he didn't require any at-school therapy, but gave me some ideas to 'beef up' his hands at home.
I'm sure that you have gotten lots of ideas through your research, but I'd like to recommend the use of clay (not Play dough, too soft) to strengthen his hands. It really worked for Chris.
Also, the teacher gave Chris a special grip for his pencil that helped him learn the proper places to put his fingers. Maybe Daniel's OT at the school will have something similar?
Anyway, best of luck. Do know that your child's struggle with fine-motor development is *not* unusual for his age.
Chris has been very lucky to have fantastic teachers who communicated with us very clearly about what he needed to work on. I mostly sent notes to class with Chris, since I worked in the Bookstore while he was in class, and it was just fine with the teachers. If you are unable to physically be in the classroom, there are lots of other strategies you can use to keep abreast of Daniel's progress.
I feel for you Belle. Parenting is hard *self-indulgent whine*.
You are a good parent. Remember that.
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posted
Thanks everyone. Your encouragement really helped, and thanks for the teachers who weighed in. I don't want to be an overly demanding parent, and I do want us to be on the same team, so I'll do as Icarus suggests and let her suggest a manner and schedule for keeping in touch. Then, if later I think it's not working, I'll schedule a conference and talk to her about it.
jexx, I will ask about those grips. Sounds like a good idea. We do have modeling clay and have used it.
punwit, thank Cheri for me.
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quote: Daniel: That's true. You're right, Mom. You're the best mother in the world. I'm going to go clean my room and take out the trash without you having to ask me.
When my mom tried to have those talks with me, I felt that she was ignoring my true concerns by trying to over-simplify them, "telling me what I feel", which I hate, and so I wouldn't talk to her about my frustrations any more after a while because I felt like she was not treating me with respect.
Um, not that I'm not sure you'll be a wonderful mother, Mrs. M.
Just that it doesn't work for every kid.
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Belle, Christian, my 12 year old son, has had trouble with handwriting since he was little. He was never interested much in writing, even when it was crayons and coloring books. He doesn't have any physical issues, that I know of, but for whatever reason, the fine motor control of handwriting has always been hard for him. When he was in the 1st grade, his teacher suggested that he be tested for special assistance. He qualified, and started taking speech therapy, occupational therapy and one-on-one time with a handwriting teacher. He continued getting special services until we withdrew him from the public school system 2 years ago. At that time, he'd just finished 4th grade, and had graduated from the speech therapy and occupational therapy, but was going to continue with the handwriting teacher in the fall.
Ultimately, looking back, I'm sorry I allowed him to have the special services. I cannot honestly say that they did any more for him that time and practice alone would have accomplished. And the cost was that we all taught him to focus on his weaknesses rather than his strengths. His handwriting has actually improved a great deal in private school (where no particular special attention has been paid to his handwriting, other than an insistance that it be legible), to the point that it is attractive when he cares to take the time to put out the extra effort. But it's probably never going to be something he loves to do. He will probably never be a calligrapher.
Anyway, I'm not making any suggestions to you, I'm just telling you what my experiences have been with handwriting issues in the public school, and what effect it appears to me to have had on my son. The teachers in the public school were wonderful. They were all very encouraging, and they did their best to focus on using his strengths to compensate for his weaknesses, but ultimately, the whole reason he was pulled out of class each day was because he wasn't good at something (a weakness), and he (and everyone else in his class) knew that very well. I think it has been far better for him the past two years, not being different, not being pulled out of class. He's just another kid in class with stuff he's good at, and stuff he's not quite so good at. I doubt he'll ever love school, but I feel pretty confident he'll love his adult life, doing whatever he ends up choosing to do. And that's kinda the point, in my opinion.
I'll keep you and Daniel in prayer for the next month as school starts, Belle. I know it's hard.
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posted
I realize there's other medical difficulties here beyond stubborness as in my case, but I thought I'd throw in my two cents on pencil grips. I never learned to hold a pencil "properly" in the tripod grip. I started out using the transpalmar kind you pictured, only upside down (thumb at bottom, pinky at top), then right side up, and eventually went to the 'interdigital brace' grip on that chart (bottom right) which I still use. (Why is it called inefficient, do you know? I'm curious.) The tripod grip was and is awkward and frustrating for me so I simply refused to learn it. Now, I do calligraphy, I draw, paint, do needlework, and my handwriting is perfectly legible, when I want it to be. (I also possess the skill of forging acquaintances' handwriting which is handy for practical jokes ). I have never suffered from cramped hands or other such problems any more than my "normal" colleagues. I still can't write neatly the "normal" way, but I can still do nearly as well with the transpalmar grip (right side up, anyway) as I can holding it the way I usually do. So, maybe try not to get too frustrated at first if Daniel insists on developing his writing skills with an unusual hand grip, like the transpalmar. Certainly the most frustrating thing for me learning that way was not that my writing was any worse than my classmates', but that my teachers were absolutely hellbent for years on making me learn the 'proper', uncomfortable, awkward way which did not work for me. They didn't give up until I was in at least grade 5.
(Again, I know there's other difficulties here I didn't have which might make learning with a different grip even harder than with the normal one - I don't know all the details of how hypotonia affects the specific motor skills related to writing. Just wanted to say it certainly *is* possible, and easier, for some people to write well with a different grip, and it could be possible that this is also part of why Daniel has trouble and keeps reverting to the transpalmar).
Good luck, and I hope you can work something satisfactory out with the school and teachers.
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Belle -- just one other thing I would like to add - because you have really good advice here from everyone already..
Often times in school the Physical Education teacher is different than the classroom teacher. So if you are communicating with the school about Daniel's needs, make sure you get ALL the teachers, not just his classroom teacher. At least in our little grade school even kindergarten students had a bit of P.E. and music classes, etc.
I made that mistake, and the P.E. teacher was pretty ruthless with my David -- making fun of him for not being able to "skip" like the other kids, and not having any muscle tone to keep up with others. Really did a good job of humiliating him. I wish I had thought in advance to talk to the P.E. teacher about his problems.
posted
There is so much good advice here, Belle.....I just wanted to chime in to say what a wonderful parent you are.
Uh my jaded reply to this:
quote: Do you think it would be a problem if I took him to OT at the first available appointment and then to the school - he would miss a few hours once a week, is that going to be a problem with the school do you think?
If they were giving him the services he needs, you wouldn't have to take him out of school.
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Farmgirl that is a very good point. They have a different teacher for P.E. but I know her from my older kids and I'll be sure to try and talk to her personally or at least send a note.
Daniel is still behind on some of those gross motor milestones - he can't skip yet.
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She is fairly young, she has six years experience, five of that in kindergarten. It's her first year at our school, before she taught in the Birmingham City schools. She just finished her MA in Early Childhood Education.
I explained his condition to her, and didn't ask for anything in particular, just mentioned that I might want to schedule a conference with her to discuss things in detail and for her to contact me if she had any questions.
She was just wonderful. Turns out that at her last job, she was on the committee or council or something that oversaw the matching up of services to kids who needed them, so she's well familiar with how the system works, what types of therapy are covered, etc.
I told her that Daniel got frustrated sometimes, and that she might need to remind him to correct his grip and she just smiled and said "He's five. And, he won't be the only five year old in here without a correct grip."
When I told her that I was going to try and line up private therapy for him, she told me that she'd happily communicate with the occupational therapist or sign any forms or do whatever I needed from her to make the process easier and help me and Daniel as much as possible.
I was feeling very, very good about it when we stopped in to visit with Emily's teacher from last year. She told me that when her son started kindergarten next year, she was going to request that he be in Daniel's teacher's class. She said of all the kindergarten teachers at the school, that was the one she wanted for her own son. That told me a lot, because I trust this teacher and have a lot of respect for her and she is aware of Daniel's situation and told reassured me that I absolutely had him in the right class with the right teacher.
That made me feel really relieved.
So we'll see how things go, but at the moment I'm feeling positive. Daniel is excited to go tomorrow, I'm hoping he'll have a good first day.
Posts: 14428 | Registered: Aug 2001
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Belle, I'm so glad that his teacher sounds like she'll be good for him (and you!). I wanted to chime in to agree with the others who mentioned that Daniel will not be the only one in the class with some delays.
I volunteered in my daughter's K classroom for journal "writing" and there was a *huge* array of skills. We had kids who could spell and write themselves, and kids who could only draw simplistic pictures. The teacher told me that the hardest part of her job was the fact that the kids were on so many different levels. Best of luck!
My son had (has) similar motor skills problems, but he had other developmental issues and received OT. One of the things they had him do was to use a rubber band or scrunchie to correct his grip. Wrap it around the pencil, than have him slide his hand in the loop. It doesn't force a correct grip, but it tugs at his wrist if his grip starts to move about. More of a reminder.
It does stand out as odd to other kids, he got his pencil stolen occasionally, but then he got an AlphaSmart (like a laptop word processor) and the other kids just got jealous. He just started 7th grade this year, no problem keeping up.
I read this thread to my wife Teresa, she said you should keep trying to get him evaluated every year. Staff changes, requirements change, funding changes... Don't assume that he's been shut out forever.
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). I have never suffered from cramped hands or other such problems any more than my "normal" colleagues. I still can't write neatly the "normal" way, but I can still do nearly as well with the transpalmar grip (right side up, anyway) as I can holding it the way I usually do. So, maybe try not to get too frustrated at first if Daniel insists on developing his writing skills with an unusual hand grip, like the transpalmar. Certainly the most frustrating thing for me learning that way was not that my writing was any worse than my classmates', but that my teachers were absolutely hellbent for years on making me learn the 'proper', uncomfortable, awkward way which did not work for me. They didn't give up until I was in at least grade 5.
