Daniel had an eval by an occupational therapist because I had concerns about his fine motor skills. I didn't think his grasp was right and I knew that our OT we had back when he was 2 years old told me that handwriting is a big problem for kids with hypotonia. I wanted to make sure he was ready for school, so I insisted on an eval.
My husband didn't think we needed it. My doctor wasn't really worried either, but when I stressed that I personally felt his fine motor skills were severely lagging behind, my doc said okay - he's not going to argue with a mother, and he wrote the prescription for services.
Well, my 52 month old child has the grasp of a 7 month old. His overall "score" if you will puts his fine motor skills at 35 months.
I knew, knew, knew something was wrong and am kicking myself for not pushing for this sooner. Obviously, he has a lot of work to do before he'll be ready for school and now there's less than one year to do it in.
I'm upset.
[ November 05, 2004, 10:45 AM: Message edited by: Belle ]
Posts: 14428 | Registered: Aug 2001
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posted
((((Belle))). Please don't kick yourself. This is not something as obvious as say, a child who is a year late walking. Remember, you DID push for it now and you have a whole year to prepare. Look into what the OT situation is in your school district in case he is not "up to speed" next September.
Get him on an ed. plan now. You can probably get him into a public preschool. (not sure if it works that way in your state)
Do not despair, just start to prepare. As soon as he can learn, teach him to type, so he can use an Alphasmart in school. It is really, really good that you had this done now.
Posts: 10890 | Registered: May 2003
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posted
Please don't kick yourself. It is great that you were proactive enough to get Daniel evaluated now - when you have almost a year to work with him before school. Did your OT have ideas for you on how to help improve his fine motor skills? If they don't know, perhaps they can point you to someone who can help you to help him get ready for school.
posted
If any elementary teachers are reading this - what do you think of some of the handwriting programs like Handwriting Without Tears?
Do they help? Is it worth investing in? It's not all that expensive, but I don't want to waste my money.
Posts: 14428 | Registered: Aug 2001
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Her recommendation was to get him enrolled in the OT program provided by the public school system. Certainly she said she'd be glad to see him but he needs weekly therapy at least, and my insurance only covers 20 visits per year. Plus, she is at Children's Hospital in downtown Bham, and her recommendation was to get him in one of the school programs so that we could just take him up to the elementary school.
She is going to write up her evaluation and send it to me, so I can have ammunition should the school try to tell me he doesn't qualify for services. (He was evaluated by the school system when he turned three, after our Early Intervention-provided OT had to stop seeing him. They told us he didn't have enough impairment to qualify for services from the school, despite our OT's recommendation that he continue getting services.)
So, it's a case of know your rights and be prepared to fight for them, but I hope that doesn't happen, because if his impairment is as severe as this evalution shows - they should qualify him without trouble.
Posts: 14428 | Registered: Aug 2001
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I've heard a lot about Handwriting Without Tears from another mail list I'm on for parents of kids with developmental delays. I've heard good and not-so-good; kind of like any other learning tool -- it works well for some, but not so well for others.
I think it is great that you caught this this early instead of after he was in school. My sister in Chicago -- her toddler showed development delays in fine motor skills -- they put him in a physical therapy (OT) program for it -- and after a year of work now, he tests at normal levels. It has done wonders for him.
You will be surprised how well and fast they can catch up when it is caught early like this, and get proper therapy for it.
posted
Belle, the best news I would say about this is your son is lucky enough to have you as a mother. You will fight to make sure he gets the help he needs. I know, for you that isn't good news. But for him it is.
Posts: 11895 | Registered: Apr 2002
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My little cousin started a program like this one year before school started, and he did very well. His grasp was very bad, IIRC. He continued to go after the school year started and spent one day a week at his "special school" which sounds bad but he thought it was the bees knees. He got to ride a cool bus every day that he went to "big school" and be with bigger kids; he has really enjoyed his therapy and stuff.
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pooka, both the twins did speech therapy for two years and it did wonders. He did make gains with the OT and the PT, but we were having feeding problems, he had nutritional concerns because of his inability to chew food properly so both the OT and speech therapist were working on that. When Lynn (our OT that saw him through early intervention) had to leave us, she recommended he continue to get services for the feeding issues, and expressed concern about fine motor as well, because she didn't get to work on it as much as she would have liked.
She also gave me some information on what the typical hypotonic kid like Daniel struggles with in school....and that's why I started getting nervous when I was doing our little preschool sessions and I noticed he cannot grip a crayon or pencil properly, or even close to properly. While Abigail is making letters on her page, Daniel struggles to hold the crayon in his hand with enough control to make a line.
Posts: 14428 | Registered: Aug 2001
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Belle, I've heard good things about Handwriting Without Tears. It's not a miracle solution, and results will vary from child to child, but it's the best program on the market for this kind of OT. I would definitely try it.
Don't beat yourself up about this. Daniel will catch up. I know it's especially hard when his twin is so far ahead of him - it used to kill my cousin when one of her twins was behind the other, esp. b/c they're identical. They always caught up, though.
Posts: 3037 | Registered: Jan 2002
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Belle, you're a good mother. Don't kick yourself - you trusted your instincts and were right, and you're in a position to get your son the help he needs.
I'm glad the days of giving a child with bad handwriting five pages to copy every night are over. I was told over and over that if I just "buckled down" I could write neatly. No one ever tried to show me how to do it correctly.
To this day I can't write neatly; I can print neatly for about 2 minutes, then it's chicken scratch. This is after 5 years of "buckling down."
posted
I'd like to chime in with reassurance that yes, you are a good mother, and the fact that you are willing to be an advocate for your children despite the opinions/agendas of others speaks very well of you.
Also - all children develop at their own rates - there is a wide variety in who does what when. Nothing is set in stone. You know your child best - strengths and weaknesses.
It's great that you are going to work on improving skills - and I think you know this already, but remember to build on the strengths and capacities already in place.
posted
You can often find HWT on ebay or a homeschool resale board like the one at vegsource.com I've looked at it, it was a good program but not what my son needed.
Posts: 1132 | Registered: A Long Time Ago!
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Belle, my son doesn't have hypotonia but has always had a very difficult time writing. My conclusion after *years* of using Handwriting without Tears (among other things) is that handwriting of any sort is highly overrated as something to worry about. He has to write stuff, but I absolutely do not make a big deal about it anymore and regret that I ever did. He hates it now. If he has to write anything, he only enjoys it if he thinks he's doing something else -- like when he writes his grampa a note to say Hi -- he's concentrating on how much fun it is to send a card in the mail more than he is the fact that he has to hold a pencil in his hand.
So I'm really sorry to hear what the conclusions came out to be, but please, don't stress out about it. Handwriting without Tears is pretty good curriculum, but only as good as keeping the focus on ability rather than on inability.
*hugs* This may be the beginning of his career as a very fine doctor. Posts: 5948 | Registered: Jun 2001
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jeni has a good point - you're only allowed to be a doctor if you have illegible handwriting - it's a degree requirement Posts: 5609 | Registered: Jan 2003
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Just wanted to say good work Belle! Only you were in a position to really notice anything like this. *hugs*
Posts: 4953 | Registered: Jan 2004
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Hi Belle-- sorry the news isn't so good, but be glad you found out now. You have ayear at least, and that can make a big difference!
I was just reading on another forum about Handwriting without tears, and a friend of mine has used it and likes it. Here's a link to the website [URL=http://www.hwtears.com][/URL]
(Hope that works, I've never posted a link before!)
Good luck, I'll keep you and Daniel in my prayers...
posted
Handwriting is not as important now as it was100 or even 20 years ago. Maybe you can explore the possibilities of getting him a computer to write at in school? I don’t know all that much about your school system, but the important thing here should be to give him equal opportunities to learn and to participate in school activities. Some schools and teachers are old-fashioned, but if you are lucky you’ll meet someone who can see the sense in this. Learning how to write well is certainly not about handwriting skills. (Of course, this doesn’t mean he shouldn’t still be encouraged to do things with his hands or try writing once in a while).
And if you’re worried about sports, there are plenty of activities he can participate in that don’t depend upon fine motor skills.
Best of luck to you both!
Posts: 99 | Registered: Apr 2003
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Belle... I think you are a wonderful mom. Don't ever think anything different. Hugs to you and Daniel.
Posts: 822 | Registered: Jul 2001
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"Some schools and teachers are old-fashioned, but if you are lucky you’ll meet someone who can see the sense in this."
At this point in time, it does not matter how old fashioned the school system is. They are required by law to meet a child's special needs. I teach kids who use Alphasmarts, and they are so quick with them there is no issue at all for them to get their work done quickly, plug in their machine, and print up their work.
The trick for you, Belle, is to know exactly what you want for your boy before you go into a meeting, and push push push. Schools are broke, and do not WANT to pay for special services if they can get away with not doing so. Go into the special services office or the superintendent's office and ask for the "Parents' Rights" package. They should have one. If not, I can find you another source of info.
Posts: 10890 | Registered: May 2003
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This is probably kinda late to be of any use, but....
One thing they had me do with Robert and Liam both (both of them tended to get tired of holding a writing instrument) was to buy a bag of old wooden squeezy clthespins. Then get a peice of board or cardboard, and paint around the edges in blocks of different colors. Then you paint the clothespins, and get the kid to put the clothespins on matching colors.
Liam really enjoyed that (his was a wooden ruler with the rainbow on it, and matching clothespins). He'd take 'em off and put 'em back on, etc. This was well after he'd known hios colors and all that. It was something fun to fiddle with. His writing is good now, and his hands are strong. I know he doesn't have Daniel's challenges, but still. It was fun.
Posts: 1664 | Registered: Apr 2004
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quote: They told us he didn't have enough impairment to qualify for services from the school, despite our OT's recommendation that he continue getting services.)
Unfortunately, they may not be saying he doesn't need help, just that he isn't impaired enough for public school. It is a problem of funding, not necessarily apathy. This is a frustrating situation for the teachers as well as parents.
My daughter was speech delayed, and they didn't have the funding to put her in a preschool program unless she was in or below the 4th percentile for speech. That is, unless out of 100 kids, 96 of them spoke better than her, despeite the fact that it was proven that children in the 20th percentile or lower needed early intervention.
Posts: 438 | Registered: Apr 2004
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Good for you for pushing the issue, Belle. You're a great mom. Others have given you good advice already, but I just had to comment on the claim that this predicts a future for Daniel as a doctor.
Doctor, sure; but not necessarily M.D. It's astounding the number of Ph.D.s (like my dad) who also write like, well, doctors. Posts: 32919 | Registered: Mar 2003
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Amka, I understand why the 20% rule is in effect, I just doubted that he truly didn't meet the requirements. The OT that had seen him for more than a year felt he was more than 20% delayed, had done the testing to back that up, and had recommended that the school continue seeing him. They did not.
Now, the fact that he is testing in some areas as low as a 7 month old when he is in fact 52 months old, seem to back up the idea that he should have been getting services all along.
The sad thing here is - I should have known better and fought harder. I could have, I chose to let the school's OT lull me into thinking "maybe he's not in as bad shape as I thought" There are procedures in place whereby I could have insisted on second opinions and even submitted my own tests from experts I hired. I did not. And I really think I should have.
I haven't contacted the school yet, I am waiting for the OT's report to arrive so I have written documentation of her findings.
Posts: 14428 | Registered: Aug 2001
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Got the paperwork. he's in the 1% percentile in grasp and 5% in visual-motor integration.
So I call the school to set up therapy...
and I'm told he doesn't qualify.
The reason - OT is not a provided service unless as an add-on, so he has to be impaired in another area first before he can get OT.
Since he isn't speech delayed and doesn't have any major medical problems he won't qualify.
I am so mad and hurt I'm just sitting her bawling. Their reasoning makes no sense - she said they don't do "medical" therapy they only work on things that will inhibit a kid's progress in school.
Daniel can't hold a crayon properly - he can't write, he can't use scissors. Is that not the definition of things that will inhibit his progress in school?
I asked what would happen to him, then and she said once he's in kindergarten if he's having problems the teacher will refer him to remedial handwriting.
But they won't address it now. So...I have to rely on my insurance which gives me 19 more visits, and according to the OT he needs weekly OT at a minimum. When the 19 visits run out I either pay for it myself, or not and let the conseuqences just happen.
I'm so upset. It was all I could do to be calm and civil with the case manager - I kept saying "I know it's not your fault, but I just don't understand"
Posts: 14428 | Registered: Aug 2001
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I know this sounds lame, but have you tried the clothespin thingy? That's something you could do at home and really show those school bastards that you can do more for Daniel than they can anyway. Okay, so I'm a little angry on your account. *hugs*
Posts: 1664 | Registered: Apr 2004
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Belle, that is SO wrong! Can you appeal? Use the time while you have the next 19 visits to get documentation from his OT, look over the laws with a fine tooth comb, and network with other parents who have appealled? I cannot imagine how frustrating this must be, I am hoping things can be worked out.
Posts: 1021 | Registered: Sep 2004
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Belle, was Daniel evaluated to rule out Prader-Willi Syndrome and Fragile X Syndrome? I can't recall.
(If he wasn't specifically evaluated for Prader-Willi, he should be. Sometimes a diagnosis can open doors. The hallmark of PWS is hypotonia, but it is -so- associated with voracious eating and "fat kids" that people forget that children with this problem are typically failure to thrive early on (poor tone -> poor suck), and the insatiable eating doesn't start until age 1 to as late as 6).
You are Birmingham area, correct?
Posts: 2919 | Registered: Aug 2004
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posted
Keep trying, Belle. You're on the right track, I think, and there's no reason to stop now.
Worst case scenario - should all efforts fail and they maintain that OT is not necessary to his schooling, demand on written notification to that effect and present it to every teacher he ever has. Let them know in no uncertain terms that marks against his handwriting or assignment speed are not allowed, since the school system doesn't think they matter.
I'm not kidding.
My son had OT from kindergarten up, but he was also diagnosed with a speech impediment so we didn't have the add-on problems. He's twelve now, starting middle school this year. Getting good grades, but still has terrible handwriting despite years of therapy and using the special pencils with the rubber band attached. He can type his homework or he can dictate it to me or Teres to write down for him, and his teachers will accept that as long as we don't actually do any of the work.
I think your son will do fine, because a) you'll be there fighting for him, and b) he's got Belle-blood and is therefore unstoppable.
[ October 07, 2004, 03:45 PM: Message edited by: Chris Bridges ]
Posts: 7790 | Registered: Aug 2000
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Sara, yes all that stuff was ruled out, and the geneticist at UAB says it's a tissue disorder and he can only identify it by doing a muscle biopsy, which no one felt was necessary.
I was afraid of this - because when he turned three and was evaluated by the speech therapist, that's when all the doors slammed shut. He is peer level with his speech, and that appears to be what they need. She kept telling me "If he only qualified for speech therapy we could add on the OT"
My only other option is to pursue some type of diagnosis through the ped, but even if we identify which one of the genetic tissue disorders he has, I don't think it's going to help.
Damn it all, the boy has a bright mind, and is a quick learner - he just needs help holding things! The OT even mentioned in her report that he was able to quickly comprehend and carry out instructions.
I'm frustrated. Hurt, angry, and very frustrated. Because I have great insurance, but they only pay for a few visits a year, and the insurance rep told me it was because kids that need longer term services are covered by the schools!
Posts: 14428 | Registered: Aug 2001
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Okay now, THAT is frustrating. It seems to me that at this point you have to go higher. Go to the district level and ask why they don't do OT alone. If you don't get help there, go to the state level and ask why OT can't be done alone.
We had a child in my daughter's kindergarten class who, because of the medication they had for him after fighting a brain tumor, had motor control disabilities. I don't think he recieved any help at all. I remember it was so difficult for him. He was so very, very careful, making him much slower and so unable to complete his work with the other kids, and still not having handwriting or cutting skills as good as classmates on his level. He was very bright. In his case, I'm not sure that OT would have helped much, because the problem got better as they lessened the dose of medication. It was also his case that he had an obvious problem: he came in still bald from the chemotherapy with a tube still. The teacher was the best K teacher I've come across, and I think he felt good about what he was able to accomplish.
But I shudder to think what would happen if the teacher were less than great. So much in kindergarten gets evaluated based on fine motor skills, and unfortunately so many teachers are impatient.
If all else fails, learn as much as you can from the OT therapy classes he has, get a book, and do what you can for him.
Hubby says call Children's hospital, get him signed up for weekly therapy and when the 20 visits a year run out, we will pay for the others.
He's right, but it makes me even more mad for parents who DON'T have the same resources we do and for whom "Just pay for it out-of-pocket" isnt' an option. (not that it will be easy for us! I don't meant to imply we have tons of extra cash lying around...)
In the meantime, I'll re-read all the stuff they gave me last year, when they denied him when he turned three and make sure that all the bases have been covered.
posted
I know it may make you tired, and if you can't then I understand. But still push it higher.
The rule is silly, and still stands probably only because there are so few cases where there is no other impairment but motor skills. It needs to be fought. The public school system, from everything I can gather, is obligated to meet the needs of every child.
Your child should not be an exception to this.
Posts: 438 | Registered: Apr 2004
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Belle - Told my wife about this when I got home. She thinks you should definitely keep pushing the school, and wondered if the fact that you can afford to pay for therapy might have anything to do with why you aren't getting it. She's a sweet lady, but it hides a vast pool of cynicism...
Posts: 7790 | Registered: Aug 2000
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posted
I'm even more cynical: the insurance company and the school district may be hoping that folks don't have the knowlege and/or resources to sic' a lawyer on them. Try
quote:UNIVERSITY OF ALABAMA SCHOOL OF LAW The Children's Rights Clinic Box 870395 Tuscaloosa, AL 35487 (205) 348-4928 Fax: (205) 348-3909 Laura McNally (lmcnally@law.ua.edu)
Represents children with disabilities mainly in disputes over special education services as well as acting as guardians ad litem in custody or foster care matters. The clinic is connected to the State's Protection and Advocacy Organization (Alabama Disabilities Advocacy Program: ADAP)
Course Offerings: Children and Youth in the Criminal Justice System; Childrens Rights; Special Education Law; Family Law I; Family Law II.
If nothing else, just reading the texts-used in the legal courses may give you info on points of leverage, help you to sling a little legalese at the insurance bureaucrats and school administrators. Knowlege may not be power, but showing that you know where the levers are tends to make bureaucrats/administrators give a more respectful hearing before exercising their own powers.
posted
"See if there are any education advocates around who would take your case. I don't know how to go about finding one, but some of our teachers might."
Yes, Belle! If you hire a lawyer to be your educational advocate, the school has to pay if he or she finds the school has neglected the needs of your child. Hire one, and get what your child needs.
Posts: 10890 | Registered: May 2003
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posted
BTW: I find it absolutely astounding that your insurance company feels that they have no duty to provide you with a full diagnosis of your son's medical condition. Frankly, I can't imagine a law that would allow them to do this. But then, you do live in Alabama: where politicians worship wealthy/corporate business interests above all other gods.
posted
I do recall from my days working for a home nursing agency that occupational therapy on its own was not considered to be a skilled care by Medicare guidelines. There had to be another need - wound care, physical therapy, speech therapy, etc. - in order to get the insurance companies (since so many seemed to use Medicare guides in determining their own standard of coverage at the time) to pay for OT at all.
Since you indicate that the issue is grasping and strength, would it be possible that a physical therapist - by Medicare definition a skilled service - could assist in strength training in conjunction with the OT and therefore make OT a covered service and hopefully something the school also will cover?
I could be completely out in left field but the thought just came to me so I had to at least share and see what happened with it.
Posts: 4515 | Registered: Jul 2004
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posted
The insurance company would give us a diagnosis if we wanted one. It was us who decided not to get one.
The procedure necessary to diagnose these types of conditions requires a muscle biopsy, which requires general anesthesia. Not to mention, the kids with these conditions scar very badly. The geneticist was of the opinion that putting a young child under anesthesia and subjecting him to another severe scar was not in his best interest, since the diagnosis really makes no difference. In other words, there is not going to be any difference in his treatment whether or not we have the actual name of the specific disorder.
My husband called a friend whose wife works in the school system and she confirmed everything we've been told. She did encourage us however to get him tested for speech delays anyway, since there is a possibility he might qualify for services and we can get him the OT that way.
Posts: 14428 | Registered: Aug 2001
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Well the latest is the county is going to test him for speech/language delays.
Frankly, I don't think he will qualify, but then I'm not a speech therapist.
The case manager confided in me that she was really disappointed in the system in cases like this, her daughter is an OT, and she feels like the system is letting Daniel down. So, we were able to chat and be friendly.
She said the speech therapist had been informed of the issue here.
Everybody would be happy if Daniel could be found to have enough delays to require speech therapy.
I am vaguely uneasy - because I feel like it would be better for Daniel if I tried to make him out to be less effective in communicating than he is.
Posts: 14428 | Registered: Aug 2001
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posted
My mom fought with our school district for four years to get my brother OT after her insurance coverage ran out (my brother also had no speech delays). The school district repeatedly refused. My mom hired an educational advocate, and within 2 months, my brother was back in OT. Unfortunately, by the time she did this, he was years and years behind in his writing, fine and gross motor skills, and even math, since he had so much trouble writing the numbers. The advocate said that the district should have had him in OT from the start. I strongly recommend hiring one; they know all the strings to pull, but frankly, with one you're negotiating from a position of power, and I think that's the most important thing.
Posts: 21182 | Registered: Sep 2004
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I did some reading, and found out that they are telling me exactly what the law states. I read the Federal Individuals with Disabilities Education Act (IDEA) and OT is definitely not a provided service. It's only a related service, and you must qualify under one of IDEA's definitions of disability in order to receive it as a related service.
I just don't see where he qualifies on any of the other criteria. So, frustrating as it is, I can't find where the county has given me any incorrect information.
That doesn't mean I'll roll over, there are still options on the table.
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