Re: Going to post intensive tx

[Guest guest]

In my eyes the FIRST thing to be socially acceptable is to be toilet trained to the point at least of going and handling most issues alone.  Second (again as I view it) safety in home (hot water, hot stove, use of knife or more likely LEAVE THEM ALONE, safety on stairs)

Thirdly - Where to go if there is fire.  It took YEARS to teach Elie that if he saw fire or smoke, he was to leave the house and go to the mailbox.  AND STAY THERE>  We practiced often - also with someone saying - FIRE - leave the house. 

Then I would worry about safety in the street, learning sign reading (EDMARK has a good program for that coupled with a reading program if your daughter has the opportunity).  IMHO - Elie functions some place between three and six, depending on where and what.  HE still is not safe crossing a street without pre-teaching at the moment.  He has attained the other steps but it took many years.  And yes, behavior was an issue for about 10 years of that time.

HE is now 26.  Took until he was 15 to be mostly able to handle bathrooming.  He is totally alone in this now. 

 

In September, will be (most likely) leaving the intensive in-home therapy program and going to a post-intensive program.  The first 1-1/2 years she did floortime therapy.  The 2nd half of the 3 year program she has been doing ABA.

 

I want to start planning now for what we should think about working with her in post intensive therapy.  I would love your thoughts/feedback on ideas for us to pursue.  is 10, but developmentally she is still around 2 years old.  I'd especially love to hear from those of you with VERY significantly delayed teens/adults.  I know that ultimately it is what we'd like to see her learn and do, but ideas based on experiences of those of you who have been there done that so to speak, will definitely help us with this decision.  Right now I can think of a zillion things, but I need to have a good basis to start!

 

Given the fact she may not cognitively develop much past where she is, what are some specific things that you would suggest we pursue working on?  She is great out in the community and doesn't really have any behavioral issues we need to consider (at least right now to work on).  I'm thinking of a combination of academics and self help, and of course working on speech.

 

Thanks for your help!  I am overwhelmed thinking about this and I don't want to waste our funding if I can help it.  I want to utilize it the best we can and what will be best for her.

 

Heidi -- Wisconsin, USA(Mom to  10 w/ DS, ASD, epilepsy; Clara 5)No two flowers bloom in exactly the same way, but all are beautiful !

-- Sara- different pathways lead to Nirvana.

[Guest guest]

Hi,I'm new on this site, and read your entry. I am a physician, and also have a child with DS and "sensory issues." I just went to a talk on autism and metabolic diseases, and just wanted to ask if you have ever had evaluated for an underlying issue, such as a mitochondrial defect or an inborn error of metabolism? There are many of these disorders that can cause autistic behavior, severe developmental delay, and some that would also include seizures - like a pyridoxine deficiency. When I heard this talk, my antennae went up, wondering about some of the kids with dual diagnosis...just because a child has DS, doesn't mean that he/she can't also have something else (yet my guess is that many kids with DS are not further worked up for their autism). I would encourage you to talk with your doctor, and get to see a metabolic or genetic specialist, if at all possible (there are many blood tests they can do, as well as MRI/MRS that can screen for these things). I hope this is helpful. You are at a crossroads, and if there is some treatment that could improve 's functioning, I know you'd want to give it (sometimes treatments are simply replacing the substance that isn't being made in these disorders...).Betsy

In September, will be (most likely) leaving the intensive in-home therapy program and going to a post-intensive program. The first 1-1/2 years she did floortime therapy. The 2nd half of the 3 year program she has been doing ABA.

I want to start planning now for what we should think about working with her in post intensive therapy. I would love your thoughts/feedback on ideas for us to pursue. is 10, but developmentally she is still around 2 years old. I'd especially love to hear from those of you with VERY significantly delayed teens/adults. I know that ultimately it is what we'd like to see her learn and do, but ideas based on experiences of those of you who have been there done that so to speak, will definitely help us with this decision. Right now I can think of a zillion things, but I need to have a good basis to start!

Given the fact she may not cognitively develop much past where she is, what are some specific things that you would suggest we pursue working on? She is great out in the community and doesn't really have any behavioral issues we need to consider (at least right now to work on). I'm thinking of a combination of academics and self help, and of course working on speech.

Thanks for your help! I am overwhelmed thinking about this and I don't want to waste our funding if I can help it. I want to utilize it the best we can and what will be best for her.

Heidi -- Wisconsin, USA(Mom to 10 w/ DS, ASD, epilepsy; Clara 5)No two flowers bloom in exactly the same way, but all are beautiful !

[Guest guest]

those are fantastic steps, I dont really know where to say to start, nathan at age 20, weve been told he tests at a 4-7yr cognitively, he does do many things a teenager can do, and runs anything in electronics as any other male does, lol, even with his limited reading skills he knows what does what on the dvr, xbox, netflix you name it.Ive noticed he is really starting to understand teasing or "kidding" lately. He has been potty trained since around 10yrs of age, we started by schedule training him at age 3 and he finally started taking himself at age 10, just occasional accidents when he is sick and cant remember the last time he wet the bed at night. He also doesnt get the saftey and street crossing issues, knows to stop at sign or redlight but then goes whether its safe or not. he

knows the stove is hot etc, as he helps cook most nights, and helps clean around the house. Doesnt seem to get the need to go to safety for fire or tornado, eventhough we have tried and tried, we have a special notice with our emergency services so they know which room is his and that he is disabled, doesnt understand etc. I dont know if bigger cities do this, but it isnt that much different than life alert, so I would think any county would willing accept this info for your address to be passed along to personel during emergency call. What I consider important for nathan to learn at school was the basics reading, math concepts/basics, writing, part of a community of peers. He also takes a life skills class, each semester is a different concept, such as laundry or cooking or body health, it has been modified and everyone in this class has a cognitive disability so they are learning something important, its also just one period throughout the day

like everyone else, its a class and he is learning more than what he would need in an academic setting. The most important issue is that your child is happy, that their quality of life is a happy one. is 20yrs old and has a huge selection of barney and muppets dvds, let alone netflix or ituntes, but who cares, he loves them, he laughs and sings to them, has a party on a daily basis practically

,seeing him happy makes me happy as im sure it does with your child too. shawna

http://sewshawna.blogspot.com

To: Sent: Saturday, February 11, 2012 3:24 PMSubject: Re: Going to post intensive tx

In my eyes the FIRST thing to be socially acceptable is to be toilet trained to the point at least of going and handling most issues alone. Second (again as I view it) safety in home (hot water, hot stove, use of knife or more likely LEAVE THEM ALONE, safety on stairs)Thirdly - Where to go if there is fire. It took YEARS to teach Elie that if he saw fire or smoke, he was to leave the house and go to the mailbox. AND STAY THERE> We practiced often - also with someone saying - FIRE - leave the house. Then I would worry about safety in the street, learning sign reading (EDMARK has a good program for that coupled with a reading program if your daughter has the opportunity). IMHO - Elie functions some place between three and six, depending on where and what. HE still is not safe crossing a street without pre-teaching at the moment. He has attained the other steps but it

took many years. And yes, behavior was an issue for about 10 years of that time.HE is now 26. Took until he was 15 to be mostly able to handle bathrooming. He is totally alone in this now.

In September, will be (most likely) leaving the intensive in-home therapy program and going to a post-intensive program. The first 1-1/2 years she did floortime therapy. The 2nd half of the 3 year program she has been doing ABA.

I want to start planning now for what we should think about working with her in post intensive therapy. I would love your thoughts/feedback on ideas for us to pursue. is 10, but developmentally she is still around 2 years old. I'd especially love to hear from those of you with VERY significantly delayed teens/adults. I know that ultimately it is what we'd like to see her learn and do, but ideas based on experiences of those of you who have been there done that so to speak, will definitely help us with this decision. Right now I can think of a zillion things, but I need to have a good basis to start!

Given the fact she may not cognitively develop much past where she is, what are some specific things that you would suggest we pursue working on? She is great out in the community and doesn't really have any behavioral issues we need to consider (at least right now to work on). I'm thinking of a combination of academics and self help, and of course working on speech.

Thanks for your help! I am overwhelmed thinking about this and I don't want to waste our funding if I can help it. I want to utilize it the best we can and what will be best for her.

Heidi -- Wisconsin, USA(Mom to 10 w/ DS, ASD, epilepsy; Clara 5)No two flowers bloom in exactly the same way, but all are beautiful !

-- Sara- different pathways lead to Nirvana.

[Guest guest]

Hi Heidi,

Along with the other fab suggestions regarding safety & self help, I would like

to suggest assessment on building communication skills.

Every state has a federally funded AT site that can assist parents and/or

professionals with assesments, training & procurement of assistive (or

augmentative) communication tools. No fee involved typically.

In the past, our child DJ has always maxed out on testing at about the 36 month

level. He has severe language deficits (orally)

Developmentally, he seemed to remain at the 18-24 month for many years. He was

provided with EI, floortime, ABA & exposed/trained on various alternative

communication methods. This ranged from sign language to AC devices to writing.

Dj functionly used sign language, pecs, varied augemntative communication

devices & words until 5th grade.

When DJ entered middle school (6th grade), some ABA was still used in the

classroom. Alternative communication methods were continued. However,in 7th

grade the shift seemed to be one from academics to pre-vocational skill

building. The teachers used pecs & vocals for communication as they were not

trained in sign or ACD.

We chose to request a continued emphasis on educational AND speech skill

building. We have done the same in high school.

I mention these things because DJ was not " awakened " until the summer between

5th & 6th grade. Lol, he was a turnip albeit a sweet turnip with scattered

skills.

He did not play-although he had mastered several nintendo games on game cube.

He did not functionally do many things aside from feeding self highly select

foods, dress self (easy clothes), etc. He did not speak or write legibly. He

could sight read words & very simple sentences.

For whatever reason, during the summer between grade 5 & grade 6, DJ just

suddenly awakened. One of the positives included suddenly writing-everywhere.

So I enabled this by making sure he had access everywhere to write. Today, he

types & writes legibly. He is 16.

This is HIS preferred form of communication as the majority of others cannot

understand his spoken words.

I basically look at his known skills & build on them. I then look at deficits

that are uber important for quality of life & address them.

I did/do this by making a list of each. Some go hand in hand; others are

isolated (hinney wiping).

Because I wanted DJ to have the ability to communicate to others, I empahsized

building this skill. Still do. Because DJ had issues with transitions &

eating & social abilities, I emphasized building those kills. Still do.

Because DJ showed the ability to use a computer or a game system or a remote or

a camera, I emphasize building on these skills.

Same with math & with writing & reading skills.

Not everyone will agree, but my philosophy is that while DJ is in school, the

focus will be on educational skills as opposed to vocational skills. So there

is a balance but NOT a complete focus on vocational. Way I see it is that DJ

only had X amount of years to get or be exposed to any academic education but

the rest of his life to learn how to do whatever vocational skills he would use.

Currently in our state, there is a new program where regular high school

subjects (curriculum)are modified to individual needs. IF a parent knows to ask

& enroll their child. Because of how the program was set up to accomondate

longer learning curves, a special ed student can continue to receive academics

until age 22 as long as they are enrolled in this program.

Just so you know, many of DJ's skills were accidently discovered by us.

Sometimes things can be overlooked in academic or even home settings. So if you

see something new your child does, perhaps add it to your list of things to work

on. No matter how simple or mundane that new thing may be, it has big

potential.

It also just helps alot to make a list of what your child can do in each area of

development. From that list you can see what is missing or needs building on or

what is ok to just skip.

Example: Self help skills. DJ can now completely dress self but cannot tie

shoes. He tries but just cannot do it (yet) In the grand scheme of things,

this is not something important to us to focus on. Velcro rules! But it was

important to us for DJ to learn how to chose appropriate clothes to put on (ie

matching, weather appropriate)

So we worked on that (still do re weather appropriate)

Basically, make lists of what/ where/ when. What can child do? Where do you

want to see your child in 5-8 (or whatever) years? When do you want goals done

& in what time frame?

This takes some long range views because building the skills towards the end

results may encompass many many steps along the way. So big picture first.

Then steps towards the final big picture. These steps=what you need to work on

now.

Remember to include transitions: middle school, high school, adult

transitions. What does your child need to do or know for each transition?

Hope this helps some. Just basic lists that are updated over time all parents

can & should use to help make decisions towards the big picture (which is

adulthood).

Best wishes & remember to have fun.

Kris

>

> In September, will be (most likely) leaving the intensive in-home

> therapy program and going to a post-intensive program. The first 1-1/2

> years she did floortime therapy. The 2nd half of the 3 year program she has

> been doing ABA.

>

> I want to start planning now for what we should think about working with

> her in post intensive therapy. I would love your thoughts/feedback on ideas

> for us to pursue. is 10, but developmentally she is still around

> 2 years old. I'd especially love to hear from those of you with VERY

> significantly delayed teens/adults. I know that ultimately it is what we'd

like

> to see her learn and do, but ideas based on experiences of those of you

> who have been there done that so to speak, will definitely help us with this

> decision. Right now I can think of a zillion things, but I need to have a

> good basis to start!

>

> Given the fact she may not cognitively develop much past where she is, what

> are some specific things that you would suggest we pursue working on? She

> is great out in the community and doesn't really have any behavioral

> issues we need to consider (at least right now to work on). I'm thinking of

a

> combination of academics and self help, and of course working on speech.

>

> Thanks for your help! I am overwhelmed thinking about this and I don't

> want to waste our funding if I can help it. I want to utilize it the best we

> can and what will be best for her.

>

> Heidi -- Wisconsin, USA

> (Mom to 10 w/ DS, ASD, epilepsy; Clara 5)

> No two flowers bloom in exactly the same way, but all are beautiful !

>

[Guest guest]

Hi! I haven't read or posted for years because it became overwhelming. I haven't even looked at the e-mail account in a long time. My son is 18 and his behaviors have been challenging - but one thing I would like to pass on to parents of younger children is to make sure that while your child is younger that they have some experience with blood draws. As my son is so large now, we have little control over many things and he will not comply with any blood draws because we didn't "train him" when he was younger. As you can imagine, blood draws are pretty standard for many medications, and good diagnostics -- so maybe another thing to think about! To: From: pastmidvale@...Date: Sat, 11 Feb 2012 16:24:56 -0500Subject: Re: Going to post intensive tx

In my eyes the FIRST thing to be socially acceptable is to be toilet trained to the point at least of going and handling most issues alone. Second (again as I view it) safety in home (hot water, hot stove, use of knife or more likely LEAVE THEM ALONE, safety on stairs)

Thirdly - Where to go if there is fire. It took YEARS to teach Elie that if he saw fire or smoke, he was to leave the house and go to the mailbox. AND STAY THERE> We practiced often - also with someone saying - FIRE - leave the house.

Then I would worry about safety in the street, learning sign reading (EDMARK has a good program for that coupled with a reading program if your daughter has the opportunity). IMHO - Elie functions some place between three and six, depending on where and what. HE still is not safe crossing a street without pre-teaching at the moment. He has attained the other steps but it took many years. And yes, behavior was an issue for about 10 years of that time.

HE is now 26. Took until he was 15 to be mostly able to handle bathrooming. He is totally alone in this now.

In September, will be (most likely) leaving the intensive in-home therapy program and going to a post-intensive program. The first 1-1/2 years she did floortime therapy. The 2nd half of the 3 year program she has been doing ABA.

I want to start planning now for what we should think about working with her in post intensive therapy. I would love your thoughts/feedback on ideas for us to pursue. is 10, but developmentally she is still around 2 years old. I'd especially love to hear from those of you with VERY significantly delayed teens/adults. I know that ultimately it is what we'd like to see her learn and do, but ideas based on experiences of those of you who have been there done that so to speak, will definitely help us with this decision. Right now I can think of a zillion things, but I need to have a good basis to start!

Given the fact she may not cognitively develop much past where she is, what are some specific things that you would suggest we pursue working on? She is great out in the community and doesn't really have any behavioral issues we need to consider (at least right now to work on). I'm thinking of a combination of academics and self help, and of course working on speech.

Thanks for your help! I am overwhelmed thinking about this and I don't want to waste our funding if I can help it. I want to utilize it the best we can and what will be best for her.

Heidi -- Wisconsin, USA(Mom to 10 w/ DS, ASD, epilepsy; Clara 5)No two flowers bloom in exactly the same way, but all are beautiful !

-- Sara- different pathways lead to Nirvana.

[Guest guest]

has had MANY blood draws over the last 10 years and they are still a fight even with numbing cream, putting the rubber band over her shirt instead of directly on her skin, etc.

Any tips on how to make this easier would be appreciated!

Heidi

[Guest guest]

Let her play and practice with a syringe (without needle)  on you, her dog, her doll, etc.  It takes a long time for a child to decrease sensitivity.  And I do not believe it is the pain so much as the hold down, the tension of the adults around, and the mere idea.

just my thoughts.

 

has had MANY blood draws over the last 10 years and they are still a fight even with numbing cream, putting the rubber band over her shirt instead of directly on her skin, etc.

 

Any tips on how to make this easier would be appreciated!

 

Heidi

-- Sara- different pathways lead to Nirvana.

[Guest guest]

We usually have to give nathan Ativan an hour before his dr appts including blood draws. He still often says "no" but will allow us to talk him into it, or bribe him with a pop and slice of pizza or something similar. He is twenty and it has take many years to get to this, before we limited all his blood draws and shots to his yearly physcial/dental while under anesthesia, worked very well as he developed a fear/phobia of drs and their offices wehn little, all those shots, blood draws, iv's etc. shawna.

http://sewshawna.blogspot.com

To: Sent: Tuesday, February 21, 2012 12:06 PMSubject: Re: Going to post intensive tx

has had MANY blood draws over the last 10 years and they are still a fight even with numbing cream, putting the rubber band over her shirt instead of directly on her skin, etc.

Any tips on how to make this easier would be appreciated!

Heidi

[Guest guest]

Tori, is not the run of the mill kiddo.  She LOVES blood draws!  She will tell the techs what arm, etc.  You can draw 1000s of tubes and she is great!  Thanks them when they are done.  However, DO NOT try to get a BP or a pulse ox on her.

LizMom to Tori who will be 12 yrs old on Thursday!