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Old 03-20-2013, 01:30 PM   #21
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Re: IEP Expectations

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Originally Posted by l_Kimmie_l View Post
He is on a feeding program at school. I plan to bring it back up to his developental/behavioral specialist. He gets OT at school too. They are at a stand still with him right now. He will taste something and gag. At one point they/we had him eating apples, now he gags again on them. Foods he once loved I cannot get him to eat. Right now he will eat:

Elio's pizza
yogurt
Chocolate Poptarts
fruit snacks
sugar cookies with frosting
Little Ceasar's Pizza
French Fries

That's it. I feel like a loser. My other kids eat well balanced meals with real food.
Your DS has good taste. Elio's pizza is THE BOMB. I would eat it all the time when I was younger.

Hang in there and good luck! They cannot make you do something you do not want to do. You have the right to look over stuff and not sign right away, you have the right to bring or involve an attorney (or threaten to do so- they don't even like the threat), you have the right to have doctors, teachers, or others who can speak on your son's behalf. They do not have the right to cut the meeting short if you're not finished (although they could try), but they are allowed to continue on a different day.

The goal (as you know) should be to give your son the least restrictive environment possible. This is how he will grow and thrive.

I wish more of my students had mommy bears looking out for them. I can't remember the last time one of my student's parents showed up to an IEP.

Sending positive vibes your way!

P.S. If you have any questions feel free to send me a message- I'm working on my administrator credential and masters-if I don't know the answer I can certainly find out for you.

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Last edited by TobinsTreasures; 03-20-2013 at 01:32 PM. Reason: more info
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Old 03-20-2013, 01:50 PM   #22
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Re: IEP Expectations

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Your DS has good taste. Elio's pizza is THE BOMB. I would eat it all the time when I was younger.

Hang in there and good luck! They cannot make you do something you do not want to do. You have the right to look over stuff and not sign right away, you have the right to bring or involve an attorney (or threaten to do so- they don't even like the threat), you have the right to have doctors, teachers, or others who can speak on your son's behalf. They do not have the right to cut the meeting short if you're not finished (although they could try), but they are allowed to continue on a different day.

The goal (as you know) should be to give your son the least restrictive environment possible. This is how he will grow and thrive.

I wish more of my students had mommy bears looking out for them. I can't remember the last time one of my student's parents showed up to an IEP.

Sending positive vibes your way!

P.S. If you have any questions feel free to send me a message- I'm working on my administrator credential and masters-if I don't know the answer I can certainly find out for you.
Thank you so much. I WILL get an attorney if they try to bully me. He is VERY smart and needs to be in a regular classroom. He needs to have some one who can bring him to the bathroom every hour or he will go in his pants. Even then he has accidents. The food thing is clearly an issue.

I plan to keep on working on these issues until they are resolved of course, but I am planning for today to be sure we are prepared.
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Old 03-20-2013, 06:30 PM   #23
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Re: IEP Expectations

What a school feeding therapist is going to do compared to what an outpatient therapist is going to accomplish is like night and day. The school only has to provide what affects his education. What DS's school speech and occupational therapists does is minimal...they know very little about feeding disorders, as their backgrounds are in education objectives---communication, fine motor control, etc. A good feed team evaluation at your children's hospital will involve a psychologist, developmental ped, SLP, OT, PT, and you. Ours took 4 days inpatient to do. We go to feeding boot camp for a week every summer, as well as weekly outpatient therapy at the children's hospital. The person we see only does feeding therapy, and does it all day every day. DS sees the speech therapist at school, but as long as he wasn't spitting food all over their table, and took 3 bites of the food, they consider him "fine" educationally because it isn't impacting his learning in the classroom. Legally, don't don't have to go beyond that.

So...we continue with outpatient therapy, as well as an outpatient psychologist. Until recently, we also worked with an outpatient PT as well because the school felt that his motor issues weren't impacting his learning, so he didn't qualify for services. Honestly, the people at our public school aren't all that great, and he only gets 30 minutes a week with the SLP in a group setting at school. She isn't going to accomplish much in that time. He gets 60-90 minutes a week with his outpatient therapist
one-on-one.

I really want to take him to Kennedy Kreiger Institute, but it takes 12 weeks inpatient far from home, and Medicaid doesn't cover it. I can't be away from home that long, I can't be off work that long, and we can't afford a 12 week hospital stay. But I wish I could get him in!

http://www.kennedykrieger.org/patien...ders-continuum
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Old 03-20-2013, 08:25 PM   #24
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Re: IEP Expectations

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Originally Posted by luvsviola View Post
What a school feeding therapist is going to do compared to what an outpatient therapist is going to accomplish is like night and day. The school only has to provide what affects his education. What DS's school speech and occupational therapists does is minimal...they know very little about feeding disorders, as their backgrounds are in education objectives---communication, fine motor control, etc. A good feed team evaluation at your children's hospital will involve a psychologist, developmental ped, SLP, OT, PT, and you. Ours took 4 days inpatient to do. We go to feeding boot camp for a week every summer, as well as weekly outpatient therapy at the children's hospital. The person we see only does feeding therapy, and does it all day every day. DS sees the speech therapist at school, but as long as he wasn't spitting food all over their table, and took 3 bites of the food, they consider him "fine" educationally because it isn't impacting his learning in the classroom. Legally, don't don't have to go beyond that.

So...we continue with outpatient therapy, as well as an outpatient psychologist. Until recently, we also worked with an outpatient PT as well because the school felt that his motor issues weren't impacting his learning, so he didn't qualify for services. Honestly, the people at our public school aren't all that great, and he only gets 30 minutes a week with the SLP in a group setting at school. She isn't going to accomplish much in that time. He gets 60-90 minutes a week with his outpatient therapist
one-on-one.

I really want to take him to Kennedy Kreiger Institute, but it takes 12 weeks inpatient far from home, and Medicaid doesn't cover it. I can't be away from home that long, I can't be off work that long, and we can't afford a 12 week hospital stay. But I wish I could get him in!

http://www.kennedykrieger.org/patien...ders-continuum
Only because I am from the area, I will tell you that many educators do not have high regards for Kennedy Kreiger, at least those I work with or encounter to include myself. In the same area I have heard that Mt. Washington is better for what you are looking for as well.
I will say that I have had children evaluated there and the will come back with odd required services, such as 3 days a week OT yet they can use scissors, write their name wonderfully, copy from the board, and lace pictures, as an educator I would never go to team with that child but it has happened 2x to me from KKI. I have had other strange encounters as well, I typically do not suggest them.
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Old 03-20-2013, 08:50 PM   #25
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Re: IEP Expectations

I am only interested in their feeding program, which is one of the best in the world. Don't know anything about the rest

This is stolen from Parent-2-Parent, but it has a lot of info...

The Big 6 programs are the following:

1) Kennedy Krieger Institute - Baltimore, MD - they have 5-6 PhD behavior analysts there
2) The Marcus Autism Center - Atlanta, GA - run by David Jaquess
3) The Hershey Medical Center - Hershey, PA - run by Keith Williams
4) The University of Iowa Hospitals and Clinics - Iowa City, IA - run by Linda Cooper-Brown
5) The Munroe-Meyer Institute - Omaha, NE - run by Cathleen Piazza
6) St. Joseph's Hospital - Patterson, NJ - run by Peggy Eicher

Each of the 6 programs tout success rates of 86-94% and regularly publish and share their results. These programs take a primarily behavior analysis approach to feeding but each has a different slant approach that could accompany the behavioral analytic approach. Basically, these programs collect data on how meals are going measuring concrete behaviors like number of bites accepted, refusal behaviors, problem behaviors during meals, tube dependence and weight, amongst other behaviors. These programs usually depict individual results in graphs as opposed to providing general impressions on how "progress" is occurring or not. Usually these programs have an array of options with their capstone program being an intensive program whereby, meals are conducted daily over several weeks ranging from 8 days to 8 weeks.

There are of course offshoots of these programs from people who trained in these programs and started their own clinics as well. Two very good examples are:

Clinic 4 Kidz run by Meeta Patel in California
SPARC run by Jen Dawson in West Chester, PA

I'd agree with MOMB in that I would ask programs to show you their results before you invest your time and resources into a program. My standard operating procedure when I did my own clinic was to have prospective family's talk with the last 3 families I worked with detailing the good the bad and the ugly of the programming. The biggest criticism of these programs is that long term results are harder to discern given that they draw from around the country. However the results that they do have for long term follow-up are excellent, but as I mentioned it would be hard for a family to travel to say Baltimore from Cleveland for a 60 minute follow-up 1 year later when things are going so well.

There are people here that can speak to specific of programs that had gone to, but understand that if asked every program will say they are "behavioral" or use a multitude of approaches, but a "behavior analytic" approach is what you are looking for. So, I would ask specifically for who the behavior analyst is on the team you are working with and ask for some of their publications in feeding. Almost anyone working in this area will have some publications of their work with children showing specific successes. We generally all attend the ABAI conference held over Memorial Day weekend, and share our results. So, you can take a look at their website for the upcoming conference (or past one's) to see if they are doing work in this area.

While other approaches exist and may be good, there is a general lack of peer reviewed research showing that those approaches work. Behavior analysts are driven by data making that more amenable for dissemination, however similar tools can be used by parents considering these other types of programs. The more other programs work the more options that would be available to parents, so I would suggest that parents consider asking for data and publications on these other approaches to spur those approaches' research efforts. Personally, I'd prefer to see what the research says on an approach versus testimonial evidence, but feeding issues can make parents desperate, so I understand why this occurs. Success rates are not 100% for behavioral approaches either, but most failures are due to complex or chronic re-ocurring medical problems in my experience.

Anyway, families considering feeding programs are fortunate if any of these programs in driving distance. However, they also have waiting lists and families that are distant from these programs are better served by going to programs locally (regardless of the approach used), and considering going to these programs after lack of success at the local programs. Generally speaking, I would recommend spending a finite period of time with a local program if "measurable progress" is not being made. That is, I'd say somewhere between 3 - 6 months and no progress is being shown then I would consider going to one of the big 6 programs or its off-shoots. More specifically, I would recommend that parents collect data on the following measures to ascertain if progress was occurring:

1) Bites accepted - generally success is in the 30-40 bites per meal range
2) Calories consumed orally - generally 100% of their oral needs need to be met (125% if the child is underweight or in the FTT range)
3) Supplemental dependence (if this is an issue) - children with FTT generally require some sort of supplementation to meet their needs, if this is typically reduced or eliminated then progress or success has occurred.
4) Refusal behaviors - generally meals are full of these behaviors when parents try hard to do meals, in some cases these behaviors rarely occur because parents have backed off on presenting food items to their children because of severe behaviors during meals. Generally speaking reducing these behaviors by 80% during initial meals or under 15% of bite presentations is generally considered to be successful (that equates to about 3-5 refusals per meal in a typical 40 bite presentation meal.
5) Problem behaviors - while crying, wining and tantrums (or aggression and disruption) are not the main reasons for feeding clinics, most parents would not call an admission successful if all of the above was successful, but this behavior was at 75-100% of the meal. Therefore, successful programming should have this behavior in check as well, that is an 80% reduction from baseline meals or 15% or less of the bite presentations (again that is around 3-5 bite presentations with problem behavior).

Again, not that other programs need to achieve these in a short time, but these are the measures of success, for me anyway, as to whether any program is working or making progress in the area of feeding. Ultimately, you want your child eating the food, refusing less, having little to no problem behaviors during meals, getting their calories from their diet and gaining weight. Slightly different goals are used for children who are "selective eaters" (e.g., they rarely need supplemental feedings and get 100% or more of their calories from their diet; its just not a healthy diet) but the approach is not very different. Still, parents can collect these data themselves even on 1-2 of the measures with any program sought. If progress towards these goals is not occurring either ramp up the intensity to the maximum possible by the approach or stop it altogether. I would have a limit of 3-6 months maximum with any approach as that is more than enough time to ascertain if success is occurring or not. In the meantime you can schedule an appointment at one of these places because of such long wait lists and cancel the appointments if you are being successful with the local program. However, if progress isn't happening you can go to the appointment and go from there.

It is important for family's to get help in this area, particularly for the FTT children and ESPECIALLY for those resistant to supplementing the child's caloric needs. The further and further the child falls behind calorically the more of an impact it has on the child's general development. There is a critical window in the first 36 months for brain development especially and while feeding issues can be handled later, if the child is not getting their calories in at key developmental stages, we simply cannot go back to these windows. So it is crucial to be IMPATIENT with unsuccessful programs that are not making progress. More of the same doesn't help and its important to move the child on to a program that has a better chance of success.
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Old 03-21-2013, 10:49 AM   #26
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Re: IEP Expectations

Thank you!!!
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Old 04-07-2013, 04:50 PM   #27
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Re: IEP Expectations

I don't know if you have already held the IEP, but as an SLP and case manager to many of my kids-- I have to hand this out to every parent. http://www.ped.state.nm.us/seb/techn...d%20Rights.pdf
This is New Mexico specific but I'm sure you can find something related in your state.

Many of the teachers and parents I work with are willing to find things that work for our students. If you don't feel like the plan is working after you all have implemented it--- request another meeting. You can always revise the current IEP if something needs to be changed!
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Old 04-08-2013, 06:07 AM   #28
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Make sure all needs are spelled out in full detail in the IEP. Even if you have discussed it, put it in writing. The school may tell you that it's okay since you talked about it but that is leaving the door open for the school to do what they want.

My son has a medical action plan from a doctor but since it is not in full detail in his IEP, the school is with in their legal rights to not follow the medical action plan (I just spoke with a lawyer this past week) even for medical issues that could be life threatening.

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Old 04-08-2013, 08:17 AM   #29
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Make sure all needs are spelled out in full detail in the IEP. Even if you have discussed it, put it in writing. The school may tell you that it's okay since you talked about it but that is leaving the door open for the school to do what they want.

My son has a medical action plan from a doctor but since it is not in full detail in his IEP, the school is with in their legal rights to not follow the medical action plan (I just spoke with a lawyer this past week) even for medical issues that could be life threatening.

mom to 3 girls and one little boy
Wow!!! Thank you. I will have to make sure it is all in writing then.
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