Anyone With A Celiac/inattentive Add Child?

[buffettbride]

I also posted something in the teen forum, but I really want parental perspective here. My 12-year old daughter has diagnosed Celiac and has been gluten-free for almost 3 years (very compliant to diet). She is also considered "highly gifted" but she's an organizational disaster. I mean, she can't keep track of anything. She loses everything. Repeatedly. She has a hard time re-tracing her steps to remember where something was lost and will do homework, but loses it before it is supposed to be turned in. I've never met such a smart kid who is academically solid, but is just a train wreck when it comes to keeping track of anything. It's driving my husband and I absolutely batty, and I think we've been going at it (a la punishment) all wrong. This week alone she's managed to lose her dance leotard, her cell phone, her mp3 player, and a homework assignment. This happens every week. If she's not stimulated in a class, she simply checks out. So, boring teacher = bad grade, even though she probably has a genius IQ.

Aside from medication (which I'm not crazy about persuing and my husband would outright refuse medication), what can I do to set my daughter up for success? She's not hyper--just totally spaced out (and if she is accidentally glutened, it's amplified by about 10,000 notches!). I've suspected this as an issue for many years, but until middle school she was able to get through it because teachers/parents largely manage those sort of organizational things at that age. We noticed some improvement when she went gluten-free, but middle school has brought on great challenges, though, as she takes on more responsibility.

Ack. Someone, please help!

[macocha]

I also posted something in the teen forum, but I really want parental perspective here. My 12-year old daughter has diagnosed Celiac and has been gluten-free for almost 3 years (very compliant to diet). She is also considered "highly gifted" but she's an organizational disaster. I mean, she can't keep track of anything. She loses everything. Repeatedly. She has a hard time re-tracing her steps to remember where something was lost and will do homework, but loses it before it is supposed to be turned in. I've never met such a smart kid who is academically solid, but is just a train wreck when it comes to keeping track of anything. It's driving my husband and I absolutely batty, and I think we've been going at it (a la punishment) all wrong. This week alone she's managed to lose her dance leotard, her cell phone, her mp3 player, and a homework assignment. This happens every week. If she's not stimulated in a class, she simply checks out. So, boring teacher = bad grade, even though she probably has a genius IQ.

Aside from medication (which I'm not crazy about persuing and my husband would outright refuse medication), what can I do to set my daughter up for success? She's not hyper--just totally spaced out (and if she is accidentally glutened, it's amplified by about 10,000 notches!). I've suspected this as an issue for many years, but until middle school she was able to get through it because teachers/parents largely manage those sort of organizational things at that age. We noticed some improvement when she went gluten-free, but middle school has brought on great challenges, though, as she takes on more responsibility.

Ack. Someone, please help!

I do. but he is only in the initial stages of celiac. goes for endoscopy wednesday.

On the medicating aspect, the only shot out I can say is if she had diabetes - would you not medicate her if she needed it? The ADD aspect of it is a chemical inbalance and it needs balancing out. I put my son on it when he was in 2nd grade and it greatly improved his academics and focusing ability. He also went to counseling to learn coping mechanisms. I was a parent that did not want to medicate either, but after thorough research and finding out myself that I have it (ADD) it has been a breath of fresh air to realize that it can be managed and not be lethargic at the same time.

I will say that the last year my son has not taken his meds so he can go through his puberty spell and I notice a huge difference in his coping mechanism. He is doing well without it, but would be better with it. His grades are still high - so it helps that he has learned some great coping skills throughout counseling and being on meds.

Girls/women are greatly underdiagnosed in the ADD side of things. I wish, wish, wish my parents would have recognized it because it was hard on me in school because my ability to focus was hard - almost difficult. I am now, being medicated that is, able to focus and surpass my goals at work and at home. it is a relief.

ultimately it is your choice on medicating - but just giving a different side of it. a great book for you and for her to read would be "you mean I am not lazy, crazy or stupid." it is a phenomenal book regardless if you medicate or not!

[missy'smom]

Sounds familiar. We have clean out and sort sessions every so often-his room, his backpack and I meet him after school to do the locker(I know I'm not the only mom who does that, DS said he saw a neighbor's mom at school doing the same thing-she has attentional challenges as well). I pick times that we are there for other afterschool reasons and when other kids are not around much so that I won't embarass him. He does the work, I provide direction. Sometimes we tackle just one or two smaller things-the pencil case, the folder, the desk. I'm a list maker so I've been trying to encourage him to do the same.

Ds just started middle school this year and it has taken us the whole year so far to get an organizational system established. We've tried different things. I think we've finally figured out what might work for him for next year. He likes to stuff everything in one folder so we'll get the fattest binder we can find and make sections for each subject. What he turns in, he does well on but so many missing assignments due to lack of organization/inattention.

His teachers reported an improvement in the past 6 weeks. We have been exploring food allergies by eliminating things he tested positive to and reintroducing them and treating environmental ones in that time frame. Teachers didn't know that we've been trying something new. I don't know if that's making a difference or if it's just that he's adjusted better now to the flow of the days.

We aren't using meds. because of a significant medical risk for him so I try and explore these other things as we are able. My own experience, not with true ADD but with processing and attention problems due to underlying health problems, has taught me that addressing medical issues can make a big difference.

[buffettbride]

I know it embarasses her when I help clean out the locker--but I've done it a time or two. I'm afraid to buy her anything to help keep her organized because she'll just lose it. Like, a planner notebook or a good cell phone with a planner. I'm afraid it would just be money down the drain. At the same time, I don't want to be the nag and always holding her hand about keeping stuff straight. There has to be a happy medium.

[missy'smom]

I pick my battles and don't expect things to be neat and tidy on a weekly basis. A good thorough clean out and organize session every so often is enough for us to get organized, get back on track and keep the clutter at bay. I approach it with him as a life skill thing-part of the rhythm of life, not so much as a discipline issue. I go through rooms and boxes etc. and clean out every so often and so can/should he. It is on an as-needed, when the opportunity arises basis. I just can't fight that battle and hold him to a weekly commitment with certain things yet, maybe when he gets a bit older-his whole room is still a bit overwhelming, the backpack is manageable right now. We are still practicing. I have to think about which things he will be held accountable on a weekly basis next year. Baby steps for us. He also is responsible for helping with other housework that involves putting things away in an organized manner-dishes, his laundry. Over time he has gotten better at it and occasionally taken the initiative on his own to make checklists. We pack up things the night before(soccer bag), I do the same for myself. There are designated places for things like the backpack-same spot on the kitchen floor-not my favorite place but it works and is visible and consistant. With certain things, if they get lost, left behind etc. he just has to live with the natural consequences- getting wet because of an umbrella left in the locker or at home, having stuff that's in bad shape or living without a replacement because we just can't afford another. As adults we have to live with those same consequences. Personally, I love organization and tidyness but I let some things go. Right or wrong or just different that's what we do.

I've had the same feelings as you with school supplies this year, we've had our share of losses and purchasing new supplies because the current system wasn't working. Call me cheap but at the end of the year I look over, clean up and stash away things that are used but good enough to be used again another year or part of the year. Thankfully, he doesn't care that all his supplies are not brand new at the beginning of the year.

He has an official DX from when he was younger so I had an IEP set up before he started Middle School because I knew with multiple teachers we would need it. He is held responsible for entering his assignments into the spiral agenda provided by the school. The teachers and I initial it after we've seen it everyday. Some things still slip through but it helps with communication and is part of the process of teaching him to keep track of things.

[buffettbride]

We've had a heckuva time not tying the disorganization to discipline/punishment, but I know we're all frustrated by it an it seems like there should be a better way.

I wish there was something like the laptop lunchbox for everything in life. Lol. As a person who thrives on organizing things, it's hard to understand when someone so smart just can't get the hang of those seemingly simple tasks.

I appreciate your input. I'm not sure I'm going to pursue an Inattentive ADD diagnosis, but there's def. some things I can do to help her keep track of herself better. Although, I see the advantages of an IEP to get an extra set of textbooks for home (so she doesn't have to worry about leaving them at school or something).

I seriously want to attach a clapper to all of her things so that they make a noise when we're trying to find them. Lol.

[macocha]

if you get the book that I recommended it has tips as well.

My link

from the about part of the book:

"Straightforward, practical advice for taking control of the symptoms, minimizing the disabilities, and maximizing the advantages of adult ADD.

There is a great deal of literature about children with attention deficit disorder, ADD. But what do you do if you have ADD and aren't a child anymore? You Mean I'm Not Lazy, Stupid or Crazy?! focuses on the experiences of adults, offering accurate information, practical how-tos and moral support to help readers deal with ADD. It explains the diagnostic process that distinguishes ADD symptoms from normal lapses in memory, lack of concentration or impulsive behavior, and it addresses:

* Achieving balance by analyzing one's strengths and weaknesses

* Getting along in groups, at work and in intimate and family relationships -- including how to decrease discord and chaos

* Learning the mechanics and methods for getting organized and improving memory

* Seeking professional help, including therapy and medication

Widely used by support groups around the country, You Mean I'm Not Lazy, Stupid or Crazy?! is the indispensable reference for anyone who faces the challenge of ADD on a daily basis."

it does have tips on organizing as well. and it doesn't focus on medicating for the symptom.

[kikamonster]

I have ADD myself and also have celiac.. I was not diagnosed back when I was a teen (or even preteen when I'm pretty sure it started), but your daughter sounds a lot like me. My parents helped me keep track of things all the way through high school and I only realized how much they had been helping me when I got to college (away from home) and had no methods for dealing with anything!

Here are two things that in retrospect I wished I could have learned before I left the house:

1) How to ask for help. We ADDers need outside structure sometimes, but first my parents always provided it (although not always the right kind because they didn't even know I had ADD) and then suddenly I didn't know how to ask for it. See if you can find a good ADD book (if she's good in school and a strong reader then she will whip through them.. They are written for people who have major trouble paying attention to books). The book can help her figure out what she needs and ask you, instead of having it forced on her all the time. Bonus, it may let you pick your battles even more!

2) Flylady.net has a great system. You may or may not be naturally organizes yourself but her system (free!) is one example of something that works well for the disorganized and ADD among us. Just try to be patient with your daughter, because no system will be perfect. No matter how amazing a system I have with things close by (also important, to have storage near where she uses the item, in order to make her not carry it so far or keep it out until she uses it again), sometimes I still wander off with an item in my hand and set it down in some really random place and it drives me crazy sometimes!

Oh, and don't forget to appreciate the positive sides of ADD: creativity, energy, and some serious perserverance (since many things seem harder to us.. Or sometimes we think we have an easier way and no one will let us use it)!

Kika

P.S. I have both been on medication and not. Right now I am not, but there was a period where I hit a dead end in learning coping methods and getting organized without it. It's obviously your decision now whether you want to put her on it, but as she gets old enough to make the decision herself she may want to try it.. I will just tell you now that the right medication will not change who she is.. Just give her more control. I imagine it as if attention is watching TV; normal people watch a channel as long as they want and then change (likely when we get bored). ADD is like the remote is in the hands of a 3 year old who changes it whenever they please.. And the medication, ideally, gives us the remote back. Without the medication, some days I am working with the three year old to not change the channel, or to change it back quickly at least!

P.S. I hope this was not too rambling and ADDish!

[buffettbride]

I love flylady.net. I am afraid of providing too much structure for her that college will be extraordinarily difficult. I do wish I could help figure out what she needs to ask me though! And she is brilliantly creative. :-)

I think it's time to head to Barnes and Noble and find some more reading material. Thanks, all!

[OBXMom]

Your daughter sounds like my daughter used to be, and I felt really sad for her as I read your post. We pulled out the stops to deal with my daughter's organization issues in middle school. I found a young counselor who had ADHD herself and she helped my daughter a lot. We also had meetings with all her teachers together, and they were very helpful. My daughter always tried really hard, and was constantly asking for a new binder or something that she was sure would help her get organized. But even with all her efforts, she was constantly missing out on things, like field trips because she forgot to bring home the permission slip.

Now in high school, you would never know that my daughter had any organizational difficulties. (Well, o.k., unless you open her closet.) She is a much happier person, understandably so, since now things aren't constantly going wrong for her. She is on medication, which I think was one factor in her improvement, but she is doing so well that the doctor thinks we can try going off of it this summer.

My suggestion to you is to keep trying things until your daughter is able to run her own show well. I have seen too many of our friends' extremely smart kids with organizational issues in middle school crash and burn in high school. Sometimes it is because they are self medicating and sometimes they are just sick of it all. Just because they can ace every test and keep up the grades while forgetting their homework regularly doesn't mean that it won't catch up to them. Some kids make it through high school only to fall apart in college. So it is good you are looking for answers now. I think it is easy for parents of really smart kids to ignore the problems, which you obviously aren't doing.

And about the celiac connection - I wonder if long term consumption of gluten in an individual having an autoimmune response to it causes some permanent brain changes. I also wonder if neural pathways that weren't developed at just the right stage can rebuild themselves over time, with help. It seems possible to me . . .

[dilettantesteph]

Your daughter sounds so much like my son. He started reading very early. Some words he pronounced strangely because he learned them by reading before hearing. But, organizationally he suffers terribly. Just this morning he went off to the bus with his instrument, poster project, but forgot his backpack. But guess what? I kissed him good-bye and didn't notice either. We both get better when we can avoid getting glutened for awhile. I'm not sure how much of it is just him and how much of it is from minor gluten contamination. He was much worse before diagnosis so I know that some of it is due to gluten contamination. He's 12 now and was 10 at diagnosis.

I also found that punishment didn't work. Rewards can help. Apart from that I help him enough so that he doesn't completely fail at school while at the same time not doing too much so that he can learn to manage better himself. Last year we went in on a few Saturdays to clean out his locker.

When he started cross country running his celiac symptoms returned and we made changes to his diet to make it more gluten free. At that time some of his organizational problems improved too.

There are techniques that can be learned to help. Write things down. Keep a planner. We use a watch alarm. We set it to times of things that he might forget, like a music lesson, or when he needs to stay after school. In individual binders we put pockets in the front where he can put the homework that is due that day. So often he would do the homework but then forget to hand it in and get marked down for that. Pretty frustrating for a parent. You can make them do the homework, but you can't make them hand it in.

To help with losing things, always have a place to put things and make sure that she gets into the habit of putting it there right away. Despite that, you wouldn't believe the number of gloves we go through. I buy several pairs at a time. His glasses were lost for a month before I found them behind his bed.

I'd have meetings with teachers and they wouldn't believe that he couldn't remember to hand in work, or wouldn't remember that it was assigned, with all their classroom techniques. They were sure that he just wasn't bothering to do it out of arrogance and laziness. I communicate with the teachers a lot so that they can help too. It is better to have them on your side. It was a teacher who came up with the watch alarm idea which has been very helpful.

It sounds like you are on the right track already since you are wanting to help. Don't go crazy. Dealing with a child like this requires a lot of love and patience.

[missy'smom]

dillantesteph, I relate to and agree with so much of your post.

As for IEPs and official DX, I had some serious reservations with getting a dx. It can be a mixed bag, but it entitles you to special services that can be beneficial. I did make sure that thorough testing was done and it cost$$-went through a private source and was happily suprized that insurance covered alot of it. I wanted to have solid data, not just checklists done by myself, teachers and psych. We know what kind of memory is superb and which kind is really lacking. His testing was done before gluten-free and he will be due again in another year. It will be interesting to see if there is any difference. Only one of the many original tests was re-run(through the school district) just after he'd been mostly gluten-free for a while and it came back improved just enough for them to make mention of it. Overall though, just being gluten-free isn't enough to erase his challenges. I am glad that we have an IEP now. I can't imagine where we would be without it now that he's in middle school. Just yesterday he came home and said it sounds like he is going to be given a special machine that he can keep with him that he can type on and it automatically saves data.

[buffettbride]

Just yesterday he came home and said it sounds like he is going to be given a special machine that he can keep with him that he can type on and it automatically saves data.

Lol. I'd be afraid my daughter would lose the machine. It's not funny--but it would totally happen.

[Jestgar]

I sound like your guys' kids (and I can't stand flylady ). From the perspective of the future, I would say that the only thing that works is finding what works for each individual. Some things you have to let go of, I'm still not very well situated in time and I have a job that doesn't require me to show up at any particular time (although I do make an effort to keep a schedule). I organize in piles and areas, my backpack has papers in it from months ago that I keep forgetting to take out, I have two (or five or 15) of most things that need to be used in more than one place, I use public transportation whenever possible (where is that d*mn car......), I carefully look around when I walk into a mall or large store so I can find which door to go out of. I have to keep 'assignments' in the front of my memory until I've turned them in, consequently, I usually do them later and turn them in as soon as I'm done. I have notes and list (ok, I usually lose these, but they work for a little while). I have sticky notes everywhere (ok, I lose these too, but usually underneath the next generation of sticky notes). There are mornings when I have to stop and check to make sure I've put on all the appropriate articles of clothing.

I'm beginning to wonder how I even manage to get through the day so I better stop , but anyway, find what works for each individual.

[buffettbride]

In theory, fly lady is helpful---but I am not a stay at home mom so trying to fit all that cleaning in one day is nearly impossible.

My daughter wants to be a stage performer/actress and is well on her way, so she's definitely picked a profession that won't require a lot of early rising.

[missy'smom]

Lol. I'd be afraid my daughter would lose the machine. It's not funny--but it would totally happen.

Yeah, I had the same thought. We shall see what happens. I think I may have to sign some papers to cover it. We had a close call with a $50 school text book not long ago. Sent up some sincere prayers and it showed up. But we gotta give them a chance, a break and remember that they are just kids, just like any of their peers who do the same stuff sometimes.

Jestgar,

I almost posted about my Dh but didn't. He and kiddo are clearly cut from the same mold. Dh found a job that accommodates his need to move and gives him the ability to get work done in his way. His life hasn't been without struggle but who's hasn't, each in our own way. But he managed to survive and succeed and make a life for himself and family and rise to a management level. I agree that some things you just gotta let go. We all have our journeys to take and our kids will have theirs. We just do the best we can for them and put them in God's hands.

[missy'smom]

I just remembered a possible solution to the lost/failure to turn in homework issue that was offered by the teacher assigned to assist him this year-FAX it in. I made up a cover sheet for him that we can reproduce, with space for him to write in the teacher's name, class and other comments. Of course, this only works if the homework comes home

[celiacmom2]

That is a great idea, faxing in the work..my son has not been diagnosed, but with reading the posts on here with D just from running long distance, unorganization, forgetfullness..described me as a child,teen, and adult...just got notice I had a positive celiac biopsy and wonder if my son has Celiac. His teacher told me he hadn't been handing in his assignments, he has a hard time memorizing spelling..but excellent at math and he has very scary grumpy moments that we all avoid him until he cools down. Weve tried constructive discipline which doesn't always seem to help and he just gets much madder(if there is such a word), he won't talk about why he is mad, and he has a hard time describing how he feels. But his teacher told me he is such a good kid in school and she kept giving him later due dates for his assignments...and she then called because she felt she was enabling him and he is such a wonderful, good kid in class so she was having a hard time having a talk with him about his homework.

Well maybe when the doc officially diagnoses me(next weeks apptmt) I will talk to him about a good pediatric GI doc in the area for both the kids to get checked out..my daughter at age 9 had to be taught how to concentrate because she was distracted so easily so the teachers put a cardboard wall up around the desk at her request when she was having a hard time focusing on her reading and in school assignments. Because she was able to ask for it, it taught her how to recognize when she was having a problem focusing. She gets good grades now that she knows how to study...my son is still a mystery to figure out right now...hes 10.

[meldupey]

Buffettbride,

I hope i am doing this right. New to the celiac community. Do you know anything about meth b-12 shots? I know people who have given them to their kids and they work great. What is nice is that it isn't a drug with bad side effects. It is real b-12 that your body needs. Some gifted children, from what I have learned, are low on the b12 and the methylcobalamin b-12 (meth b-12) has worked really well for kids like your daughter. You have to see your daughter's doctor about prescribing them. They have to be special ordered, (dosage is done by weight.) I know that Lee Silsby compounding pharmacy in Cleveland Hts, OH puts these shots together. It is nothing that can hurt your daughter. It is well worth a try. You can research more on the internet. I first learned about them while reading "Healing and Preventing Autism." I read it because a doc recommended it for my son, who is a gifted child. Gifted children seem to have many of the same problems Autistic kids have,physically. Anyway, you may have to do your homework to give you some ammo when you go to your pediatrician. Mine was very compliant but I know others are not.

I also posted something in the teen forum, but I really want parental perspective here. My 12-year old daughter has diagnosed Celiac and has been gluten-free for almost 3 years (very compliant to diet). She is also considered "highly gifted" but she's an organizational disaster. I mean, she can't keep track of anything. She loses everything. Repeatedly. She has a hard time re-tracing her steps to remember where something was lost and will do homework, but loses it before it is supposed to be turned in. I've never met such a smart kid who is academically solid, but is just a train wreck when it comes to keeping track of anything. It's driving my husband and I absolutely batty, and I think we've been going at it (a la punishment) all wrong. This week alone she's managed to lose her dance leotard, her cell phone, her mp3 player, and a homework assignment. This happens every week. If she's not stimulated in a class, she simply checks out. So, boring teacher = bad grade, even though she probably has a genius IQ.

Aside from medication (which I'm not crazy about persuing and my husband would outright refuse medication), what can I do to set my daughter up for success? She's not hyper--just totally spaced out (and if she is accidentally glutened, it's amplified by about 10,000 notches!). I've suspected this as an issue for many years, but until middle school she was able to get through it because teachers/parents largely manage those sort of organizational things at that age. We noticed some improvement when she went gluten-free, but middle school has brought on great challenges, though, as she takes on more responsibility.

Ack. Someone, please help!