I Can't Do This For Another Year

[geekparent]

I haven't been around in a while, and I only arrived very briefly last spring, so I'll post my story (briefly) again.

My difficult child was diagnosed with ADHD (impulsive/hyperactive) and anxiety. Her issues show up when she is in a challenging situation and/or doesn't get her way. She will cry, yell, scream and even will go so far as running and hiding under furniture or throwing herself on the floor and having a full out temper tantrum. She is EIGHT.

Her behavior was so bad that she was kicked out of her private, religious school and put into public school last school year. It was 4th and final grading period when she started her new school.

Her teachers, the principal and the school psychologist there seem to have a better handle on things but . . .

School has only been in session for 7 days and she's already had two incidents. She was fine all summer and at day camp (she was no angel, but there was none of this running away, hiding and throwing herself on the floor in the clutches of a full blown tantrum). Now, it's happened twice at school, once when she didn't get her way or believed she had been slighted and then today, well, I'll just post a bit of the teacher's email:

I wanted to let you know that [difficult child] had to be taken to the office today. She was upset during our Morning Meeting, where we were doing a making words activity. She was stuck on a question and after me giving her a hint, was asked to go back to her seat to think some more. She then hit a boy sitting next to her "for looking at her". She was told that Recess was to be taken away and then began screaming and throwing her paper, pencil and herself to the floor. She was directed to a cool down spot. [difficult child] continued screaming "I hate when everyone looks at me" and that she wanted to kick everyone.

She's currently seeing a psychiatrist and a cognitive behavioral therapist. Her therapist has suggested that we remove white flour from her diet and stick to mult-grains and add a lot of additional protein. Of course, her therapist didn't offer any menu planning or books or anything that would help with this.

Right now, I'm frustrated, tired and bitter. I cannot take the phone calls and emails for another year. I can't keep dealing with this. I'm at work and had to take an early lunch only after I'd spent twenty minutes crying in the bathroom. husband/her dad is no use because he'll just get super upset and freak out when he finds out she freaked out again, so I have no one to talk to and no support. I deal with this on two fronts and I'm just about at the end of my rope. The thought of going home, packing a small suitcase and just leaving them to deal with other and fend for themselves over the long weekend is very tempting.

I'm not sure what I'm looking for here. Advice? Understanding? I don't believe that there is a light at the end of the tunnel. I'm convinced that my daughter will be high school outcast who can't get dates because she acts like she's in elementary school. She's never going to be normal. She's never going to be right, and honestly sometimes I just want to give up trying.

 

[TerryJ2]

Hi Geekparent,

first of all, don't think about it in terms of another yr. Think about today and tomorrow. It's sort of like AA. Otherwise, you'll be overwhelmed--as you are.

Second, getting rid of white flour is a great idea. Here is a link to gluten free recipes (I can't use all of them because my son is also lactose intolerant). Be prepared for some meltdowns and wasted food--nothing beats a Twinkee, ya know? But it will come with-time. I always have a backup plan for foods that difficult child won't eat or that don't turn out. One: feed it to the birds. Two: Eat it myself. Three: Ummm... I don't have a third option yet.
Anyway, they also offer ideas on local restaurants, as shown below.
I order rice flour, tapioca flour, and bean flour from Amazon.com. There is also a new bakery down the street that will bake gluten free items if I order enough, and order in advance. You can probably find one in your area. It is a growing need and a great way for people to make money. The bakers I know all have gluten allergies and had to learn to bake with-o wheat due to necessity, and ended opening bakeries and tea shops. When life gives you lemons ...


http://www.wendys.com/food/pdf/us/gluten_free_list.pdf

My son only ran and hid once, when he was about 6, at the dr's ofc, when he had to get a shot. It took us 15 min. to find and restrain him. It was embarrassing but worthwhile, in that the dr had never seen anything liike it.

You need to find out what triggers your daughter. You said she's already had 2 incidents. I'm betting that they didn't happen out of the blue. Closely and I mean closely, question the teachers who were present and find out what happened b4 and during the incidents. Ask about lighting, clothing, sounds, pressures from assignments, other students, etc. Try to put yourself in that situation so you can feel like you are there and then you can imagine what the straw was the broke the camel's back.
It will help to provide supports and interventions for your difficult child, as well as prevent the triggers, too. For ex., maybe she didn't get enough sleep the night b4, and then had wheat for breakfast, and then she was jittery to begin with, and she was daydreaming, and the teacher called on her 3X and after being ignored, shouted her name out. Or a paper airplane konked her on the head.
Things that are minor annoyances to us are major catastophes for these kids.

 

[DammitJanet]

Welcome back. Well it sounds like you are getting off to a really great start at school! I will be honest here and say I think you are dealing with more than simple ADHD. I had a son with that and he sure didnt have all that going on. I think you might want to look into getting a further indepth exam for her. Maybe look into a childrens hospital for a multi-disciplinary exam.

Many here like the books The Explosive Child or the Love and Logic books. Might try reading those for some good hints.

I know it seems like the fight is hard with no end in sight. Please dont look to the future like HS and dates. Let that time come then. Who knows how she will be by then. That is 8 years until she will be 16! (We dont want our baby dating until then...lol) Lots can happen between now and then.

I so know how hard it is to parent these kids. I have been doing it for almost 30 years now. Gawd I am old! I have felt like giving up so many times. I have disliked them so many times. I thought they would hate me when they were grown. Oddly enough, I cant pry them out from under me with a 2x4! Someday you will find the same thing. All this will be a blur. Its kinda like child birth. The pain gets forgotten after they grow up.

 

[geekparent]

Welcome back. Well it sounds like you are getting off to a really great start at school! I will be honest here and say I think you are dealing with more than simple ADHD. I had a son with that and he sure didnt have all that going on. I think you might want to look into getting a further indepth exam for her. Maybe look into a childrens hospital for a multi-disciplinary exam.

She's also diagnosed with anxiety disorder. I was told that the rages and tantrums are a result of the anxiety closing in her on her "getting stuck" in her head and unable to move past those walls.

Many here like the books The Explosive Child or the Love and Logic books. Might try reading those for some good hints.

first of all, don't think about it in terms of another yr. Think about today and tomorrow. It's sort of like AA. Otherwise, you'll be overwhelmed--as you are.

Second, getting rid of white flour is a great idea. Here is a link to gluten free recipes

Her doctor didn't say we needed to go glutten free, just that we needed to reduce/eliminate white flour and white sugar and supplement with multi-grains/true whole wheat if we're going to do wheat at all. And also to add more protein. I'm curious to know if anyone has heard of this sort of diet and what it helps? Why would the recommendation be whole grains vs. glutten free?

You need to find out what triggers your daughter. You said she's already had 2 incidents. I'm betting that they didn't happen out of the blue. Closely and I mean closely, question the teachers who were present and find out what happened b4 and during the incidents. Ask about lighting, clothing, sounds, pressures from assignments, other students, etc. Try to put yourself in that situation so you can feel like you are there and then you can imagine what the straw was the broke the camel's back.
It will help to provide supports and interventions for your difficult child, as well as prevent the triggers, too. For ex., maybe she didn't get enough sleep the night b4, and then had wheat for breakfast, and then she was jittery to begin with, and she was daydreaming, and the teacher called on her 3X and after being ignored, shouted her name out. Or a paper airplane konked her on the head.
Things that are minor annoyances to us are major catastophes for these kids.

My daughter is very ego-centric. The world revolves around her. What I mean by that, is that if she was already frustrated and someone looked at her, accidentally bumped into her, walked past her desk and created a breeze that made the paper fluff then it's all their fault, they were being mean, they did it on purpose, they stared at her, they hit her, they teased her . . . I'm not just taking this on the teachers' words over the years. I've seen it in action.

The minute anything is out of place in her world, the world is blowing up and coming to an end. The moment a friend doesn't want to do what she wants to do or does anything that doesn't involve difficult child it's because the person hates her or is being mean to her. She will come home at least once per week exclaiming that someone doesn't like her and doesn't want to be her friend. Why? Because they wanted to play jump rope and she wanted to play Barbies. I don't even know how to communicate with that sort of self-centered view of the world. Short of telling her "Hey, you're not IT. You're not close to IT. You're really NOT that important compared to the other billions of people on the planet. The world DOES NOT, HAS NOT and WILL NOT revolve around you." But she's 8 and I know she couldn't grok that. And I'm pretty sure her self-esteem issues are messed up enough because she does get ostracized because of her behavior. She doesn't get invited to play dates. She doesn't get invited to birthday parties. I feel bad for her, but I know that it's all in how she reacts - no other kids want anything to do with her.

And honestly, if I were 8? I wouldn't want anything to do with Miss Hair Trigger either.

 

[Star*]

(grabbs pom pons and cheerleader outfit) ---and honey if you saw the shape I'm in THAT alone would get you on the ground rolling -------HOWEVER being a CD Board Mom and Friend.........

and a one, two....

We aren't sissys, We aren't thin. We are tough, with our high held chins (the older the more each person Know what I mean??)
Every day we take more hits, that a bowling pin! (uuuugh noise)

We are mighty, we are fierce, WE ARE WARRIOR MOMSsssss (stretch that out like a marine drill sgt.)
No one fights as hard as us, to parent and stay calm.

So grab your keyboard and log on to CD Board .com and find the solace that you seek
....While screaming into a pillow and your parenting skills you tweak!

YEAHHHHHHHHH TEAM..........Gooooooooo MOM.........(does cartwheel)..........rips ham string.......writhes on ground screaming - I am not young, I forgot to stretch.....OMG what was I thinking? You think your KID is bad? Try being me.

In all seriousness.......the best advice in hindsight I have to offer? GET YOURSELF parenting counseling because no two kids are parented the same .........and with these kids? YOU NEED HELP and there is NO shame in evening the odds in your favor. Best thing I ever did was go to counseling 2-3 times a week - We took Dude, I took MYSELF and then we went for FAMILY counseling. By the time I got done? I had a better handle on My self, my KID and my family in general because EVERYONE got to air it all out and work on their greviances.

Hugs - and cheers -------(from my chair) --hands YOU my pom pons.

 

[geekparent]

GET YOURSELF parenting counseling because no two kids are parented the same .........and with these kids? YOU NEED HELP and there is NO shame in evening the odds in your favor. Best thing I ever did was go to counseling 2-3 times a week - We took Dude, I took MYSELF and then we went for FAMILY counseling. By the time I got done? I had a better handle on My self, my KID and my family in general because EVERYONE got to air it all out and work on their greviances.

How do you find parenting counseling? Is it like family therapy? Can a regular therapist do it?

 

[JJJ]

The benefit of going gluten-free, casein-free/All natural versus just whole grain can be huge. It is hard to go gluten-free, casein-free/All-natural. Her diet will mostly consist of fruits, vegetables, eggs and meat for a while until she gets used to the girlfriend/CF options. I would look for a health food store near you and find a block of time to go and wander and talk to the staff about girlfriend/CF options. They are more expensive than regular foods. The key is that you must be completely girlfriend/CF. We went into it gradually (replaced pastsa sauce with an all-natural version, then replaced the noodles with a girlfriend-version, then replaced the milk with soy milk and rice milk, then replaced cereal with some girlfriend options, etc). My younger son (Tigger) could not attend school as an 8-year old due to his behavior/anxiety/etc. He is now doing very well at school. He is in the ED classroom since he needs a lot of help with social skills but if this year goes as well as last year, he will be 'promoted to the Learning Disability (LD) classroom next year.

Does your daughter have an IEP? That is going to be so key to helping her.

 

[geekparent]

Does your daughter have an IEP? That is going to be so key to helping her.

No, there is no IEP. She's on a Behavioral Intervention Plan at the moment, carried over from last school year. The school did seem resistant to an IEP for her going in and even her psychiatrist and therapist are reluctant to "label" her; they still believe her issues can be worked through. I'm still in the mindset right now that she will never be normal and will probably get expelled for punching someone.

 

[whatamess]

Sounds like the anxiety my youngest exhibits. He cannot stand it if he thinks someone is looking at him. With the teacher taking away your child's recess when she was already escalating, I don't blame your daughter for completely losing it. Talk about adding insult to injury. They don't understand her anxiety or aren't accepting as a real issue. They need to be empathetic and patient, not punitive. Find out about getting her an IEP under the Other Health Impaired category for her severe anxiety.

 

[susiestar]

There are a whole lot of things that could be going on with your daughter. first of all, she is not CHOOSING to behave this way. NO child truly wants to be an outcase, to have everyone upset with them. If you can look at this as her being UNABLE to react differently, then you may find that you have a whole lot more tolerance and acceptance for her.

The therapist's advice re: cutting down white flour is good for all of us, but in my opinion is not likely to do much for your daughter. Going gluten free for about 6 weeks will let you know if gluten is part of your child's problems. It is WELL worth the effort if your child is one who reacts to gluten. You would likely see an ENTIRELY different child after about 4-6 weeks, with significant changes in between. There are a TON of GOOD recipes and even gluten free mixes on store shelves. Going Casein free is also helpful. Casein is a protein in dairy. Many items you wouldn't suspect of having dairy actually have casein in them, so you have to learn to read every label. AGain, tons of good recipes and if your child reacts to casein the payoffs for eliminating it are HUGE.

Of course if you eliminate these and she gets a lot better then the diet has to become permanent. Quite a few parents here have gotten life-long dramatic improvements using a girlfriend/cf diet.

There are a lot of other things to do. Increasing the protein is a good tool. Many kids are better able to cope if they have a decent amount of protein in their diet. If you pick up one of "The Zone" diet books or cookbooks by Dr. Barry Sears they offer recipes with balanced amounts of fat, protein and carbs. In a child who does NOT respond to the girlfriend/cf diet (or who's parents are too overwhelmed to take that step right now), this is a fairly easy way to help your child have the tools to face the world. Right after school she should have a snack that has a good amt of protein - before she does much else. Try a few ounces of deli meat, if you have to go to the grocery make your first stop after a cart be the deli where you get popcorn chicken, a chicken leg (my kids called them bones and pretended they were dogs - lots of growling and sometimes only barked at me during the trip. Esp at ages 6-9), and if ALL else fails, stock up on Zone and Balance nutrition bars - both brands are balanced with 40% carb-30% protein-30%fat. Many kids just think they are a new candy bar. They have a LOT of varieties and will do a whole lot more to give you a reasonable child than a candy bar will.

That (increasing protein) is a quick change. There are a bunch of other things we recommend. First is reading "The Explosive Child" by Ross Greene. Also reading Parenting with Love and Logic by Fay and Cline (www.loveandlogic.com though books are available at all bookstores). You also need to have your daughter evaluated for learning disorders and other problems. I STRONGLY recommend finding a neuropsychologist to do a complete evaluation of her. It will help you figure out why she is reacting the way she is.

Given the wide range of things that bother her, I also strongly recommend that you find a private Occupational Therapist to evaluate your daughter for sensory integration disorder. It is a condition where the brain does not process input from the senses in an appropriate way. It can cause problems in every aspect of life and can be treated quite effectively in most cases. To put it plainly, what your daughter experiences in a situation may be very different than what you or someone with-o Sensory Integration Disorder (SID) experiences in the same situation because your daughter's brain is not giving the same messages about what is going on that other people are getting from their brains. The therapy does not involve medication and can make HUGE differences.

School will have Occupational Therapist (OT)'s who can evaluate her, but they will miss a lot of the ways Sensory Integration Disorder (SID) could be appearing because they look for how it effects education, not her entire life. A private Occupational Therapist (OT) will be vastly more thorough and can train you in any appropriate therapies to help.

As you start this process of evaluations and accommodations, you should also work on a Parent Report. There is a link in my signature that will take you to an outline on this board. It is a document you put together that tells everyone who helps your child all about her. It will help you keep everything organized and it is invaluable and priceless.

 

[JJJ]

No, there is no IEP. She's on a Behavioral Intervention Plan at the moment, carried over from last school year. The school did seem resistant to an IEP for her going in and even her psychiatrist and therapist are reluctant to "label" her; they still believe her issues can be worked through. I'm still in the mindset right now that she will never be normal and will probably get expelled for punching someone.

Which is exactly why she needs an IEP. The 'reluctance' to label is so out of date. Services are driven by labels. I would demand (as your legal right) a full and complete evaluation of your difficult child. Just based on your first post, I would be very concerned about undiagnosed learning disabilities. My son is very bright so the school put every thing down to "just behaviors". Well, when we finally got the full and complete evaluation done -- it was so much more than behaviors. In fact, once the sensory and learning disabilities were appropriately addressed, the behavior became a teeny, tiny part of his issues.

If dad can't handle it, you need to decide if you are better off dealing with the school yourself or if you need your husband to get on board with you. I fought all of the school battles myself. To me, getting husband involved would have created more stress and work for me. (My husband is a great dad but it did take him a while to get on the same track with their needs.)

To start the IEP process, you need to (1) send the school a certified, return receipt letter asking for a full and complete evaluation (2) complete a parent report and (3) go through each domain and list the areas in which your daughter has difficulty, including dates of incidents at school or copies of work if possible.

I will go find the links for all of that and post them later.

 

[JJJ]

Here is the link to the sample letters:

http://www.conductdisorders.com/forum/f12/recommended-spec-ed-resources-33738/

ALWAYS SEND THEM CERTIFIED WITH RETURN RECEIPT.

 

[BusynMember]

I just saw your post.
First of all, welcome.
Second of all, I'm not comfortable with a plain ole therapist suggesting a diet. The diet is controversial. You can try it; can't hurt. I would take your child in to see a neuropsychologist...they do awesome intensive tesing in every area and, like some others have said, it sounds like it could be something other than what sh has been diagnosed with. Sounds to me like she could be an the autism spectrum, high functioning. How was her early development and does she understand how to socialize with her same age peers? Any obsessive interests? Can she transition well from one activity to another or does that cause a total meltdown?
Pervasive development disorder (Pervasive Developmental Disorder (PDD)/autism) is a developmental delay. Except for Aspergers Syndrome, in which the kids have very good expressive language, the kids tend to have delayed speech. Even with Aspergers, the social skills just arent there and the child, like yours, may APPEAR self-centered because they don't relate well to other people...or understand them either. They need help with that. Also, they can act very childish in public since they are not tuned into their peers and are not concerned with looking silly in front of the other kids.

At the same time, the kids are usually bright and DO care when they are teased and they are "different" which causes more meltdowns. Teachers don't understand them and often plain therapists don't get them. Behavioral therapy isn't that helpful with most of our kids, no matter what is wrong, but especially not with Autism Spectrum Disorders (ASD) kids. I have an Autism Spectrum Disorders (ASD) son and we struggled through the ADHD/ODD/anxiety/sensory disorder etc. long list wit inappropriate medications until he was finally figured out by a neuropsychologist since age 11. I've had no doubts every since and he is now 17.

I would keep looking for answers and I'd do it with a neuropsychologist.

Good luck, whatever you decide to do.

 

[geekparent]

There are a whole lot of things that could be going on with your daughter. first of all, she is not CHOOSING to behave this way. NO child truly wants to be an outcase, to have everyone upset with them. If you can look at this as her being UNABLE to react differently, then you may find that you have a whole lot more tolerance and acceptance for her.

I do understand that she's not choosing to react this way, but I'm the one that gets the emails and telephone calls at work. I'm the one who has to talk to the teacher and the school psychiatric and the principal. I'm the one missing work, getting pulled away from my desk, and it gets very frustrating. I worry about my job, especially in this economy. I have a pretty understanding boss and HR folk, but the nature of my job requires me to be at my seat and present. If I'm on the phone with the school or worse - I have to pick her up from school and take the afternoon off (unpaid! I'm all out leave time!) then that looks back. So it stresses me to no end.

There are a lot of other things to do. Increasing the protein is a good tool. Many kids are better able to cope if they have a decent amount of protein in their diet. If you pick up one of "The Zone" diet books or cookbooks by Dr. Barry Sears they offer recipes with balanced amounts of fat, protein and carbs. In a child who does NOT respond to the girlfriend/cf diet (or who's parents are too overwhelmed to take that step right now), this is a fairly easy way to help your child have the tools to face the world. Right after school she should have a snack that has a good amt of protein - before she does much else. Try a few ounces of deli meat, if you have to go to the grocery make your first stop after a cart be the deli where you get popcorn chicken, a chicken leg (my kids called them bones and pretended they were dogs - lots of growling and sometimes only barked at me during the trip. Esp at ages 6-9), and if ALL else fails, stock up on Zone and Balance nutrition bars - both brands are balanced with 40% carb-30% protein-30%fat. Many kids just think they are a new candy bar. They have a LOT of varieties and will do a whole lot more to give you a reasonable child than a candy bar will.

This was something else that her therapist suggested. She just didn't provide any suggestions or guidelines beyond "meat, fruits, vegetables." Not a big help, especially where things like breakfast and lunch are concerned. difficult child is not a big deli meat fan. She got tired of eating nuts after three days of giving her those as extra protein snacks. And husband is happy (it's easier) for him to give her yogurt or waffles or cereal in the morning. (Though I'm about to toss out all the cereal and start fresh!)

I'll definitely check out the zone cookbooks.

I STRONGLY recommend finding a neuropsychologist to do a complete evaluation of her. It will help you figure out why she is reacting the way she is.

I can't get a neuropsychologist around here. We have three good places here, two great children's hospitals and one great clinic (The Cleveland Clinic) but none of the neuropsychs will see her without a referral from her psychiatrist and/or pediatrician. Also, my insurance won't pay for it without a pre-cert and referral. I spend out of pocket for her psychiatrist, and that alone is a real healthy chunk of change.

Given the wide range of things that bother her, I also strongly recommend that you find a private Occupational Therapist to evaluate your daughter for sensory integration disorder. It is a condition where the brain does not process input from the senses in an appropriate way. It can cause problems in every aspect of life and can be treated quite effectively in most cases. To put it plainly, what your daughter experiences in a situation may be very different than what you or someone with-o Sensory Integration Disorder (SID) experiences in the same situation because your daughter's brain is not giving the same messages about what is going on that other people are getting from their brains. The therapy does not involve medication and can make HUGE differences.

I'll look into this too. I think we might have some available that I can get under my health care and insurance.

Also going to see about getting the books on my ebook reader on my smartphone.

 

[geekparent]

Second of all, I'm not comfortable with a plain ole therapist suggesting a diet. The diet is controversial. You can try it; can't hurt.

Not so much of a diet as a diet modification. But it can't hurt. I'm willing to try anything.

I would take your child in to see a neuropsychologist...

I'd love to, but I can't get an appointment.

How was her early development and does she understand how to socialize with her same age peers? Any obsessive interests? Can she transition well from one activity to another or does that cause a total meltdown?

Other than being a 5 week preemie, she was right on schedule (or ahead) with her developmental milestones. She smiled and laughed around two months, (but the pediatrician pointed out that was 1 month for her), and that was the only delay. By the time she was six months old, she was all caught up with her infant milestones. She mostly skipped crawling, went right to furniture walking and then walking by the time she was about 13 months. Her speech development was on time, if not ahead of schedule. (She's a real chatterbox and has been since she started using words)

She doesn't have obsessive interests. She gets obsessed with things and interests for short periods of time. For instance, right now the tv show, Big Time Rush (*shudders*) is her thing. She watches it obsessively, as often as we let her. The same episodes over and over. But in another two weeks, it will be something else. She was doing an art project and needed glitter; she kept reminding me for three days that she desperately needed the glitter. Every time I went out the door to go to work. Then (the day I got the glitter), she'd moved on and the project wasn't that important anymore. But she was calm about the glitter. She accepted that I couldn't get it until the day that I actually purchased it; she just had to remind me.

She does transition from activities pretty easily with advanced warning. ("Ok, in ten minutes it's time to take a bath." Or "In fifteen minutes, we're going to turn off the tv and play a game.") However, she does freak out in new situations, no matter how much warning she is given. She takes karate and has been in the children's class. It's time for her to move up to the next level, so Sensei and Shihan (her instructors) agreed with me that we should transition her slowly. Day 1 was watch the other class. Day 2 was just join the other class for warm-ups. Now, we'd talked about this several times. Sensei and Shihan had talked to her about it. We had long conversations. The moment she stepped on the mat (with her Sensei and several kids from her class who'd already moved up) she froze. She froze, she burst into tears and wouldn't do the simple exercises that she's been doing and doing well for six months.

And that's probably more info than you were looking for.

 

[Mamaof5]

She's currently seeing a psychiatrist and a cognitive behavioral therapist. Her therapist has suggested that we remove white flour from her diet and stick to mult-grains and add a lot of additional protein. Of course, her therapist didn't offer any menu planning or books or anything that would help with this.

There is something called the GFD diet (gluten free diet) that seems to help ADHD\ADD kids quite a bit, along with a low sugar\food additive and dye diet. I find red dyes and yellow dyes set my difficult children off quite a bit along with large sugar quantities (soda, candy, cookies, etc).

http://en.wikipedia.org/wiki/Gluten-free_diet
http://www.vegfamily.com/health/gluten-free-vegan-diet.htm
If you ignore the vegan part if you aren't into the vegan part of the last article it can be applied to meat diets too. However, there are proteins available in a vegan\veggi diet as well that are alternatives to meat itself (I'm not vegan\veggie myself but have considered it lately quite a bit).

HTH

 

[JJJ]

An IEP can be written so that you don't get all of those calls at work. The school is responsible for educating her for the complete school day. If they cannot manage to do so with the current level of support, then they need to provide more support.

 

[agee]

Her doctor didn't say we needed to go glutten free, just that we needed to reduce/eliminate white flour and white sugar and supplement with multi-grains/true whole wheat if we're going to do wheat at all. And also to add more protein. I'm curious to know if anyone has heard of this sort of diet and what it helps? Why would the recommendation be whole grains vs. glutten free?

My first thought when I read this is that your dr. is suggesting a diet to even out your daughter's blood sugar. Not really a special diet, but one where her blood sugar will be more even. I don't feed my kids anything sweet at all in the a.m. except maybe fruit with cheese or peanut butter, and my difficult child only gets eggs, cheese, or meat, and hopefully all 3. Then we really emphasize the protein at the rest of the meals.
I am insulin resistant and hypoglycemic. If I ate waffles for breakfast with-in about 2 hours I would be shaky, cranky, and tantrum prone. And I am not a growing girl. My son cannot tolerate straight sugars or all-carb meals. We are literally asking for a fit/fight/screaming match if we feed him like that.
Not saying that a gluten free diet is a bad idea (I am actually ALSO gluten intolerant so don't eat gluten myself) but I'm pretty sure this is why your dr. wants your daughter to eat this way.
Good luck!
A

 

[Marguerite]

Geekparent, I've had to skim responses. Sorry. But I'm a fairly accurate skimmer. I hope I've got everything right.

First - I understand the dread of the phone calls and emails. They shouldn't be happening. When they ARE happening, it means that services your child needs are not in place. it is not your fault, not your child's fault, not even necessarily the school's fault. Sometimes things just haven't been connected yet. So it's not about blame, it's more about how do we work out what she needs, and get it put in place?

As difficult child 3 had increasing problems in mainstream, it got so I couldn't organise my life at all; if I had a doctor's appointment I often had to cancel or turn back while halfway there, because the school had rung andasked me to come collect difficult child 3 who was vomiting again (it turned out to be due to extreme anxiety - this is what it can develop into, especially as teen years approach). The class teacher was insistent that
1) there was something seriously physically wrong with difficult child 3 and we were wasting time trying to say it was anxiety; and then

2) He was deliberately making himself sick to get out of school.

Both these statements were mutually exclusive. Idiotic. But in tis case, the class teacher was the last straw in the anxiety cascade.

I talk about an anxiety cascade as others (and you) have described how anxiety can be complex and due to a series of events which the individual takes personally to heart.

Susie recommended books. The doctor recommended cutting out white flour, but from other things he's said I think he's grasping at straws. Either cut out gluten and get serious with other possible food sensitivities, or stop fiddling with this and that and get the kid real help. I make that statement to the doctor, not you.

I'm appalled that the doctor thinks these issues can just be worked through - not at all. She needs a diagnosis. Now, I normally get very annoyed at people who put a premium on labels. On another thread I've been emphasising that in that case, the symptoms are what should be focussed on, not the possible label, because in that case the considered label could be a distraction and lead therapists astray. But in your daughter's case, she needs to be appropriately referred to first the pediatrician, then the psychiatrist, then the neuropsychologist. MUST BE DONE! The doctor is wrong to not allow it; he doesn't want to share, doesn't seem to play nicely with others.

So the line I've used on doctors in tis situation - "I know you feel we can just work this through, but I'm already badly out of pocket because I took her to a psychiatrist that you could have written a referral for, but chose not to. I think the psychiatrist is helping. You might disagree. But surely the only way we can find out, is for you to refer her. If the pediatrician comes back and says, "This can be worked out through behaviour management, I will bow to your superior knowledge, you will know you have been proven right. I will then stop nagging you for referrals. Deal?"

I'm with MidWestMom. THis to me sounds like something on the autism spectrum. You say she's not got the single focus obsession, but these obsessions can and do change. A lot. What you describe is normal for autism/Asperger's. And if that IS what it is, then the poor kid is suffering badly. She desperately would need an IEP, possibly ADHD medications (they can still work in some case - in my kids for example - even if it's primarily autism) and certainly NOT behaviour modification.

We went through the behaviour modification with difficult child 3 at school. The behaviour teacher was lovely, a regular visitor who put in a lot of work with difficult child 3. But the problem was - he learned all the things he should do, the ways he should behave. But when anxious or upset, he was incapable of putting these into practice. And the little ****es in his class (not all the kids, only a few) knew how to push his buttons to cause a flip-out and get him into trouble. It caused entertainment and the teacher's distraction, which for these kids was the big payoff. One little darling used to stick pins in difficult child 3 and then pretend total innocence. A scripture teacher (visiting pastoral untrained 'teacher' weekly) observed this while she had the class and reported it to me; said she had reported it to the class teacher who said she didn't see anything. difficult child 3 had independently been reporting the same thing for several YEARS and nothing had been done, except to punish difficult child 3 if he hit this kid. I later found that this kid's mother had been encouraged by the class teacher to press charges against difficult child 3 for hitting her son. Thankfully the mother chose not to. I found this out when things had escalated to such a point with this kid that I went round to their place to have it out. We ended up resolving problems and while those boys are not best friends, they now respect each other and look out for each other. One meeting. I sorted it. After years of teachers doing nothing despite being told about it and despite all their records showing problems.

The trouble is, despite having a diagnosis, difficult child 3 got labelled as the weird kid, the one who was out of control, dangerous and shouldn't be there but should be in an institution. Some teachers cared, I think because difficult child 3 loved learning and was intelligent (teachers respect that) but his behaviour was, to them, unpredictable. To me, his behaviour is very predictable, I know exactly what triggers him and how far to push him and then draw back before he explodes.

A diagnosis helps. You need one to get an IEP. That's another point for the doctor - she needs help at school, she needs extra support that they can't give her, without a diagnosis. IT DOESN'T MATTER IF THE diagnosis IS WRONG. Tell the doctor tis. A diagnosis can be changed later, but the IEP, once in place, provides more support than she is getting now.

And tis then has a bearing on your health (mental and physical). If your daughter's needs are =better met at school, you won't be getting so many challenging messages, calls and emails and will be better able to cope.

It is in your doctor's hands. Plead with him if you must. Tell him you will kiss his feet if he is proven right. Or whatever it takes. Tell him you will sew a sampler to put on his wall that says, "I am a diagnostic guru" if it turns out the referrals were not needed. But if they are - the sooner the better. Hey, doctor, let's just play it safe, OK?

Girls also express Pervasive Developmental Disorder (PDD) differently, which is another reason why you need to be careful to not dismiss the Pervasive Developmental Disorder (PDD) option too soon. We've found tis out the hard way - easy child 2/difficult child 2 doesn't have an official Pervasive Developmental Disorder (PDD) diagnosis, but it's looking more and more like it will just be a matter of time. Her current therapist agrees it is most likely Asperger's, atypical because she's female.
When easy child 2/difficult child 2 was very young, she seemed socially capable at a very high level. She would read newspapers, watch the news on TV, looked after me (picked up my crutches when I dropped them), helped draft a letter of complaint to the local TV network when her favourite TV show got axed - all before she was 4 years old. She was very determined, too. Of course, now we look back we can see that a great deal of this was her need to be in control, and to have what SHE wanted put in place. But academically she was a prodigy. On the basis of an amazing IQ test she was permitted to start school early.
Then at about age 8 she hit the brick wall. Socially too. Her obsessions became more apparent and she seemed to regress emotionally.
Now at 24, she's a lovely girl but at times when her anxiety gets out of control, it is crippling. If she had been diagnosed when younger, she would have learned better strategies because it would have been recognised. Instead it went underground with her, she hid her anxiety and it broke out in cutting. It saddened me to see her, beautiful in her strapless ivory gown on her wedding day, with scarred arms. Although I don't think anybody noticed the scars...

But despite what we knew with the boys, we missed it with our girl. easy child also has some anxiety issues which could be connected with the genetic tendency of family members to show some Pervasive Developmental Disorder (PDD) traits too, when other family members are on the spectrum.

We had to fight a GP to get the pediatrician referral for difficult child 3. Later, after the pediaitrician had diagnosed autism, I happened to take difficult child 3 back to that doctor to get a high fever checked out. I said to the doctor, "Please look in his ears and throat, to make sure he doesn't have tonsillitis or middle ear infection."
The GP said, "He's two years old now, heading for three. He can ell you if his throat hurts or his ears are sore."
I replied, "He doesn't, actually. We've noticed he doesn't respond to pain as you would expect. We've been told that he is one of those kids with autism who don't respond to pain in the usual way."
The doctor yelled at me. "Your child is not autistic! Stop trying to find things wrong with your child!"
I replied (by this time pushed out into the waiting room with a lot of startled people looking on," You wrote the referral. I didn't diagnose him, the pediatrician did. Argue with him."
As it turned out, difficult child 3 did have tonsillitis that day. We ended up having to take him to the hospital that night, he was admitted with croup as well.

At other times I've had doctors say, "I'll write the referral for you, but you will be back here apologising to me, admitting it was a waste of time." ANd I wasn't. And those doctors have accepted that they made a mistake but did a good ting to write the referral anyway. In general I do stay friends with doctors, I make sure I feed back all info and keep the GP in the loop of it all. But in return, I require the GP to give me some rope too. It has paid off, as a rule.

And if you really feel you have to, find a new GP. As I had to, with the one who shouted at me in front of the waiting room full of patients. He had begun badmouthing me to another patient who was a notorious gossip, and that is unethical, so we moved on. But I only change doctors when I have absolutely no other choice. I will work with a doctor to the last rather than move on. Better to convert a doctor to my way of thinking, than to move on and leave the guy still thinking like an idiot.

I hope you can get some help for yourself and your daughter, and get the GP to write those referrals.

Marg

 

[Star*]

Hi ya geek -

First place to start when everything seems such a jumble and insurance won't pay for "needed" service (insert groan)......County Health departments will see ANYONE, with an appointment on a sliding scale fee. OFTEN, not always but often depending on where you live and I'm guessing if Cleveland Clinic is close you are close to Cleveland? (I'm from Ohio, but live in SC) they will be a good place to start for a multitude of referrals. Another place to ask OFTEN, again not always is your childs school guidance counselor. I say often because sometimes these are the people that spend day in and day out with her in a confined and controlled setting. YOU don't. Sorry, but you don't. You have her at home, she's in, out and in and out and despite whatever attempts you think you make at control? You have none. If you did? She wouldn't behave like she is (NOT that it's your fault but our kids do tons better with structure) and there is NO way you can do that in a home setting. That's why a lot of them (our kids) either do good at home and then fall apart in school or do good in school for a while and then loose it and then come home and completely loose it. some believe it or not do horrid at school and then come home and are fine for a while. We never figured out Dude's method - so we just figured he lost it everywhere, and treated him accordingly.

The reason I say mental health is because they would have access to connections to places that most psychiatrists aren't going to know about. County and state agencies that could (sorry to throw this at you too) but "place her outside the home" and take her to a residential treatment place or a psychiatric hospital and observe her behaviors then if necessary recommend diet elimination therapies for you to monitor or medications to trial her on until she's stable. Does she want to behave like this? (shrug) well.....yes and no. Probably the unpopular thought here, but part of me says - Mostly kids do not want to behave badly - no. However, most parents think that you can basket A children and they all will behave like X and you can parent them all like X, and you can feed them all like X, and they will all turn out basically the same. NOT TRUE at ALL. This is stinkin thinkin. Even with children that do not have mental disorders. So then you start playing the blame game. If you're divorced or separated? OMG it's even worse - So the poor kid is stuck in the middle while Mom and Dad try to grow up. And there is A TON of reading on effective communication that needs to be done BY YOU - about YOUR DAUGHTER to CHANGE the way YOU SPEAK TO HER....and it's not bad, it's not wrong - it's PROGRESSIVE, it's learning. It's really something you can apply to everyone you meet. I learned a lot how things I thought were helpful or what I thought was a pat on the back was really a slap to the face. That's the first thing you will learn in family therapy.

If you just want to GO out on your own and find a therapist? Pick up the phone book, ask a pastor at church, Call a hospital referral board, - any of those places can refer - or even call your insurance and ask them for a list of physicians on your list of providers. There are a lot of programs out there for parents and kids like ours that are FREE...you just have to get in the know with people and find out where the organizations are and get on their lists and wait. We waited two years to get on the SC Governors Continuum of Care for Seriously Emotionally Disturbed Children - but once we did? It helped us to know where to go to ask for other help like - RESPIT, foster care, residential treatment, psychiatric hospitals...and we read, read, read, got educated, did research. I can't even tell you on two hands how many times our son was placed outside our home. He was on 65 plus medications, He has been in jail, he has not graduated HS. I mean you keep lowering your expectations - but my bottom line finally became - HE IS ALIVE and so are we. because there were times when I nearly wasn't because of him due to stroke - suspected heart attack, thoughts of suicide...no joke. If you don't get a good support system in place now, if you don't realize that having a ing buddy outside of your family, husband and friends is tantamount to your well being (because you start telling this **** to them? You will run them off in spades promise) and if you don't find a way to separate her behaviors from the child and realize she isn't doing this today because she WANTS to but yesterday she DID do that because she wanted to and was being manipulative, because you USED to parent her like X, but KNOW better now and won't make those mistakes any more because you Went to therapy and KNOW how to say NO, I WILL NOT, YOU WILL BECAUSE.........and start helping her?
You will fail and she will fail.........and this will get worse, and worse.

if you want to PM me you're welcome to ---------If you want to email me I'll try to help you find resources where you live. Everyone will......it's what we're here for. just don't get overloaded........not hard to do when you want to solve the problems of the world. DO know - this - What is wrong with her ------is NEVER going to go away. It can be managed, it can be helped. There is no pill, no cure, no diet, no therapy - no holy water (I tried) that will fix her. But if you start now? There is hope. We started with Dude when he was 5 years old. Therapy, diets, you name it.......even naked chicken liver dances in the moon light.

Hugs