Re: Re: What should we do? :)

[Guest guest]

Aloha All,

Dr. Capone from the Kennedy Krieger Institute gave us *PARENTS!*

(of children who have the " Dual Diagnosis " ) some really good advice during his

workshop at the NDSC Conference last week...

Per my rushed notes...

Regarding your child...

See your child's differences

Seek informed consultation

Manage (tolerate) uncertainty regarding diagnosis

Embrace complexity of diagnosis

Let go of desire for a simplistic (approach)

Accept level of RISK to try new things (medications!)

Work collaboratively (with others on your child's case)

Stay informed

And just for parents...

Maintain OTHER interests!

Simplify your life!

Find appropriate support network

Learn to enjoy some WINE! (Seriously he really said this!)

Seek mental health treatment for depression, anxiety, sleeplessness-get help and

attention YOU need, too! (Oh yeah, that's the one I keep " forgetting " to do!)

The lists seem so " common sense " probably to most, but being able to write it

down really helped me feel more " in control " of the complexity of

this Dual Diagnosis!

I know that feeling where you are so burnt out with dealing with high-end

behavior issues, CONSTANT REDIRECTION that exhausts you, and then on top of that

having to seek out the help your child needs-that you have no time for yourself.

Sometimes it's OK to just " veg " and take time for YOU, too!

If I lived on the mainland USA, I would make an appointment to have Aubrey (11,

DS Trisomy 21, PDDNOS, Mild/Moderate Hearing Impairment) be evaluated by Dr.

Capone at the Kennedy Krieger Institute in Baltimore, land as soon as

humanly possible and drive for as long as it would take me to get there.

Dr. Capone would call that " seeking INFORMED consultation! " Without insurance,

the 3-4 day evaluation/consultation would cost me over $2000 out of pocket

though. YIKES!!!!!!!!!!!!

So...

Today, Friday, there is a committee of neuro developmental disorders pediatric

specialists at the University of Hawai'i who are deciding whether or not our

family will be one of their case studies this year.

IF we are selected, Aubrey, and I will have consultations with neuros,

psychs, STs, PTs, OTs, dentists, in conjunction with these docs and our

developmental pediatrician...This team will made recommendations to the DOE as

well...they have had ONE other case study with a child with DS/PDDNOS in the

past with much success. Aubrey's Ped is also hoping they will also be able to

consult with Dr. Capone...(I want him to speak in Hawai'i!!!)

If not selected this will mean it is time to seek help outside of Hawai'i. If

so, and treatment is not effective, then we may be able to convince Aubrey's

insurance compan(ies) (Summerlin/medicaid waiver) to cover some of the

evaluation costs should we go to the Kennedy Krieger Institute in the Spring. We

will apply for emergency funding from a local fund that supports travel costs

for high end cases like Aubrey's...

Can you imagine how different our family's lives would be if I made MORE

MONEY?!?!??!

It took me a YEAR to learn and implement all of this information, and to

formulate PLANS A, B, C etc...There is some peace in having a plan.

Hope this shortens your journey to your family's plan!!!

Hey ALL! Got really good news last month I forgot to share. My little Brother is

the medical producer for the new Dr. OZ Show starting next month!

Hehehehehehehehe!

I MUA! (Go forward!)

Desi

Mililani, Hawai'i

Subject: Re:What should we do?

To:

Date: Friday, August 14, 2009, 8:43 AM

 

Dena,

I remember from your previous posts that you were thinking looking

into medications for ph. You have also had some changes in your

home in the past year- a new baby, and the loss of ph's speech

therapist who was helping him use a communication device.

Based on what you told us is going on right now, this is what I would

recommend (in order of importance):

1. Thorough physical, beginning with a blood test for his thyroid

levels, checking for gut problems, including GERD (see Margaret's

recent post to you), molars, seasonal allergies, etc. You said you

were trying the GFCF diet- I don't remember if you had been

successful with that, if it was because he was having a lot of

diarrhea, or what. If he is having bowel problems, that needs to be

checked out. Don't forget ears, as some of our kids have high pain

thresholds and he could be having an ear infection and you might not

know it. If he has sleep problems, that needs to be checked out-

poor sleep plays havoc with our kids' behaviors.

2. Get him seen ASAP by a child psychiatrist (has he had a formal

diagnosis of autism? ). He should have a full work-up, especially to

make sure he has that autism dx and then to have a two-pronged plan:

-- of developing a functional behavior assessment (FBA) with a good

plan that your whole family can follow. That part will probably be

done with someone from the agency that you get services from- I am

unclear about how that works when you homeschool.

--have him evaluated as to what medications can help. I will be

blunt about this. You have a little baby and other children at home.

You are living with a child who can be harmful to all of you right

now. You do NOT want to expose your family to risk of injury just

because you don't want to consider medications. Family after family

on this list has been where you are. NO ONE wants to be in the

position of medicating children. But in your own words, ph is

angry all the time. One time you wrote that you had all stopped

going to church. There is no shame or failure in pursuing

medications that can help. It will probably take some time. Is your

son being seen by a pediatrician? In a DS clinic? An autism

clinic? You need the support NOW of someone who has seen lots and

lots of kids like ph and who can help you make a plan.

3. I know from several personal friends and from folks on this list

that homeschooling is a very personal choice. I know that people

make this decision for all kinds of reasons. I also know that in

some families, they may decide to have child go to a school program

if his needs can no longer be met at home. As a long distance

internet fly on the wall, I would like to offer the observation that

ph needs a different kind of school program that what you can

humanly provide right now. If he were to go to school, you would get

a much needed break and the rest of the family would also have a

chance to recharge their batteries.

4. Communication piece- speech therapy. Where do you stand in

getting those services again for him? Especially since he was making

progress on a device. If it looks like it's going to be a while-

say, more than a few weeks, you have even one more reason to consider

sending him to school.

5. Ask yourself, " Is what I am doing now working? If not, what are

the steps I can take to change it? And WHO ELSE CAN I ENGAGE TO HELP

WITH THOSE CHANGES?? Posing questions to the list is a first step.

6. I am not saying do not consider bio-medical steps- that is part of #1.

7. Do you have any ties with your local DS organization? I know it

can be tough to connect there when your son seems to be struggling so

much more, but they may have resources that you weren't aware of.

And, there may be families there who have similar issues, you just

never know!

8. Figure out some way you can recharge yourself, or you will crash

and burn. Even if it means hiring someone for a few hours a week

just to be with ph.

Good luck, and keep us posted.

Beth

PS. My Pete had a terrible time with aggressions during (and after)

puberty. He has behaved like your ph during different periods of

his life. At 19 he is a much calmer kid. When behaviors start to

move backwards for him, I go right down the list that I wrote above.

[Guest guest]

Desi: I love DR. CAPONE & DR. OZ!!!

Liz

--

" Let me win, but if I cannot win, let me be brave in the attempt. " - Special

Olympics Motto-RIP Eunice Kennedy Shriver

“When we long for life without difficulties, remind us that oaks grow strong

in contrary winds and diamonds are made under pressure.-Author Unknown

" Knowing trees, I understand the meaning of patience. Knowing grass, I can

understand persistence. " - Hal Borland

[Guest guest]

Hi Desi,

I hope Aubrey is selected for this study. Keep us posted. I hope your plan comes

to frutition. Kudos to your brother, love Dr. Oz.

Charlyne

From: Beth <ppaul1columbus (DOT) rr.com>

Subject: Re:What should we do?

To: @yahoogrou ps.com

Date: Friday, August 14, 2009, 8:43 AM

 

Dena,

I remember from your previous posts that you were thinking looking

into medications for ph. You have also had some changes in your

home in the past year- a new baby, and the loss of ph's speech

therapist who was helping him use a communication device.

Based on what you told us is going on right now, this is what I would

recommend (in order of importance):

1. Thorough physical, beginning with a blood test for his thyroid

levels, checking for gut problems, including GERD (see Margaret's

recent post to you), molars, seasonal allergies, etc. You said you

were trying the GFCF diet- I don't remember if you had been

successful with that, if it was because he was having a lot of

diarrhea, or what. If he is having bowel problems, that needs to be

checked out. Don't forget ears, as some of our kids have high pain

thresholds and he could be having an ear infection and you might not

know it. If he has sleep problems, that needs to be checked out-

poor sleep plays havoc with our kids' behaviors.

2. Get him seen ASAP by a child psychiatrist (has he had a formal

diagnosis of autism? ). He should have a full work-up, especially to

make sure he has that autism dx and then to have a two-pronged plan:

-- of developing a functional behavior assessment (FBA) with a good

plan that your whole family can follow. That part will probably be

done with someone from the agency that you get services from- I am

unclear about how that works when you homeschool.

--have him evaluated as to what medications can help. I will be

blunt about this. You have a little baby and other children at home.

You are living with a child who can be harmful to all of you right

now. You do NOT want to expose your family to risk of injury just

because you don't want to consider medications. Family after family

on this list has been where you are. NO ONE wants to be in the

position of medicating children. But in your own words, ph is

angry all the time. One time you wrote that you had all stopped

going to church. There is no shame or failure in pursuing

medications that can help. It will probably take some time. Is your

son being seen by a pediatrician? In a DS clinic? An autism

clinic? You need the support NOW of someone who has seen lots and

lots of kids like ph and who can help you make a plan.

3. I know from several personal friends and from folks on this list

that homeschooling is a very personal choice. I know that people

make this decision for all kinds of reasons. I also know that in

some families, they may decide to have child go to a school program

if his needs can no longer be met at home. As a long distance

internet fly on the wall, I would like to offer the observation that

ph needs a different kind of school program that what you can

humanly provide right now. If he were to go to school, you would get

a much needed break and the rest of the family would also have a

chance to recharge their batteries.

4. Communication piece- speech therapy. Where do you stand in

getting those services again for him? Especially since he was making

progress on a device. If it looks like it's going to be a while-

say, more than a few weeks, you have even one more reason to consider

sending him to school.

5. Ask yourself, " Is what I am doing now working? If not, what are

the steps I can take to change it? And WHO ELSE CAN I ENGAGE TO HELP

WITH THOSE CHANGES?? Posing questions to the list is a first step.

6. I am not saying do not consider bio-medical steps- that is part of #1.

7. Do you have any ties with your local DS organization? I know it

can be tough to connect there when your son seems to be struggling so

much more, but they may have resources that you weren't aware of.

And, there may be families there who have similar issues, you just

never know!

8. Figure out some way you can recharge yourself, or you will crash

and burn. Even if it means hiring someone for a few hours a week

just to be with ph.

Good luck, and keep us posted.

Beth

PS. My Pete had a terrible time with aggressions during (and after)

puberty. He has behaved like your ph during different periods of

his life. At 19 he is a much calmer kid. When behaviors start to

move backwards for him, I go right down the list that I wrote above.

[Guest guest]

We find out if selected for study this coming week...Dr. Oz was the only reason

I was watching Oprah recently. I sure hope he gets picked up after the first 13

weeks! They are airing Oz show here in Hawai'i in the morning on the local abc

affiliate. In the meantime, when and if they run credits, look for " Kirk

Fernandes! " Can you tell I'm a proud big sister?

Desi

From: Beth <ppaul1columbus (DOT) rr.com>

Subject: Re:What should we do?

To: @yahoogrou ps.com

Date: Friday, August 14, 2009, 8:43 AM

 

Dena,

I remember from your previous posts that you were thinking looking

into medications for ph. You have also had some changes in your

home in the past year- a new baby, and the loss of ph's speech

therapist who was helping him use a communication device.

Based on what you told us is going on right now, this is what I would

recommend (in order of importance):

1. Thorough physical, beginning with a blood test for his thyroid

levels, checking for gut problems, including GERD (see Margaret's

recent post to you), molars, seasonal allergies, etc. You said you

were trying the GFCF diet- I don't remember if you had been

successful with that, if it was because he was having a lot of

diarrhea, or what. If he is having bowel problems, that needs to be

checked out. Don't forget ears, as some of our kids have high pain

thresholds and he could be having an ear infection and you might not

know it. If he has sleep problems, that needs to be checked out-

poor sleep plays havoc with our kids' behaviors.

2. Get him seen ASAP by a child psychiatrist (has he had a formal

diagnosis of autism? ). He should have a full work-up, especially to

make sure he has that autism dx and then to have a two-pronged plan:

-- of developing a functional behavior assessment (FBA) with a good

plan that your whole family can follow. That part will probably be

done with someone from the agency that you get services from- I am

unclear about how that works when you homeschool.

--have him evaluated as to what medications can help. I will be

blunt about this. You have a little baby and other children at home.

You are living with a child who can be harmful to all of you right

now. You do NOT want to expose your family to risk of injury just

because you don't want to consider medications. Family after family

on this list has been where you are. NO ONE wants to be in the

position of medicating children. But in your own words, ph is

angry all the time. One time you wrote that you had all stopped

going to church. There is no shame or failure in pursuing

medications that can help. It will probably take some time. Is your

son being seen by a pediatrician? In a DS clinic? An autism

clinic? You need the support NOW of someone who has seen lots and

lots of kids like ph and who can help you make a plan.

3. I know from several personal friends and from folks on this list

that homeschooling is a very personal choice. I know that people

make this decision for all kinds of reasons. I also know that in

some families, they may decide to have child go to a school program

if his needs can no longer be met at home. As a long distance

internet fly on the wall, I would like to offer the observation that

ph needs a different kind of school program that what you can

humanly provide right now. If he were to go to school, you would get

a much needed break and the rest of the family would also have a

chance to recharge their batteries.

4. Communication piece- speech therapy. Where do you stand in

getting those services again for him? Especially since he was making

progress on a device. If it looks like it's going to be a while-

say, more than a few weeks, you have even one more reason to consider

sending him to school.

5. Ask yourself, " Is what I am doing now working? If not, what are

the steps I can take to change it? And WHO ELSE CAN I ENGAGE TO HELP

WITH THOSE CHANGES?? Posing questions to the list is a first step.

6. I am not saying do not consider bio-medical steps- that is part of #1.

7. Do you have any ties with your local DS organization? I know it

can be tough to connect there when your son seems to be struggling so

much more, but they may have resources that you weren't aware of.

And, there may be families there who have similar issues, you just

never know!

8. Figure out some way you can recharge yourself, or you will crash

and burn. Even if it means hiring someone for a few hours a week

just to be with ph.

Good luck, and keep us posted.

Beth

PS. My Pete had a terrible time with aggressions during (and after)

puberty. He has behaved like your ph during different periods of

his life. At 19 he is a much calmer kid. When behaviors start to

move backwards for him, I go right down the list that I wrote above.

[Guest guest]

Desi and others....

Always remember that our family lives about 45 minutes (1 hour to 1 and 1/2

hours if heavy traffic) from Dr. Capone's clinic. We would gladly help provide

a place to stay if you are unable to get help for housing. Normally, people

stay close to the clinic but sometimes just that added expense (and the expense

of eating out) is a deal breaker. We feel so lucky to have access to Dr. Capone

on a normal basis. Our home is always open. Please don't forget!

Holly

Re:What should we do?

To:

Date: Friday, August 14, 2009, 8:43 AM

Dena,

I remember from your previous posts that you were thinking looking

into medications for ph. You have also had some changes in your

home in the past year- a new baby, and the loss of ph's speech

therapist who was helping him use a communication device.

Based on what you told us is going on right now, this is what I would

recommend (in order of importance):

1. Thorough physical, beginning with a blood test for his thyroid

levels, checking for gut problems, including GERD (see Margaret's

recent post to you), molars, seasonal allergies, etc. You said you

were trying the GFCF diet- I don't remember if you had been

successful with that, if it was because he was having a lot of

diarrhea, or what. If he is having bowel problems, that needs to be

checked out. Don't forget ears, as some of our kids have high pain

thresholds and he could be having an ear infection and you might not

know it. If he has sleep problems, that needs to be checked out-

poor sleep plays havoc with our kids' behaviors.

2. Get him seen ASAP by a child psychiatrist (has he had a formal

diagnosis of autism? ). He should have a full work-up, especially to

make sure he has that autism dx and then to have a two-pronged plan:

-- of developing a functional behavior assessment (FBA) with a good

plan that your whole family can follow. That part will probably be

done with someone from the agency that you get services from- I am

unclear about how that works when you homeschool.

--have him evaluated as to what medications can help. I will be

blunt about this. You have a little baby and other children at home.

You are living with a child who can be harmful to all of you right

now. You do NOT want to expose your family to risk of injury just

because you don't want to consider medications. Family after family

on this list has been where you are. NO ONE wants to be in the

position of medicating children. But in your own words, ph is

angry all the time. One time you wrote that you had all stopped

going to church. There is no shame or failure in pursuing

medications that can help. It will probably take some time. Is your

son being seen by a pediatrician? In a DS clinic? An autism

clinic? You need the support NOW of someone who has seen lots and

lots of kids like ph and who can help you make a plan.

3. I know from several personal friends and from folks on this list

that homeschooling is a very personal choice. I know that people

make this decision for all kinds of reasons. I also know that in

some families, they may decide to have child go to a school program

if his needs can no longer be met at home. As a long distance

internet fly on the wall, I would like to offer the observation that

ph needs a different kind of school program that what you can

humanly provide right now. If he were to go to school, you would get

a much needed break and the rest of the family would also have a

chance to recharge their batteries.

4. Communication piece- speech therapy. Where do you stand in

getting those services again for him? Especially since he was making

progress on a device. If it looks like it's going to be a while-

say, more than a few weeks, you have even one more reason to consider

sending him to school.

5. Ask yourself, " Is what I am doing now working? If not, what are

the steps I can take to change it? And WHO ELSE CAN I ENGAGE TO HELP

WITH THOSE CHANGES?? Posing questions to the list is a first step.

6. I am not saying do not consider bio-medical steps- that is part of #1.

7. Do you have any ties with your local DS organization? I know it

can be tough to connect there when your son seems to be struggling so

much more, but they may have resources that you weren't aware of.

And, there may be families there who have similar issues, you just

never know!

8. Figure out some way you can recharge yourself, or you will crash

and burn. Even if it means hiring someone for a few hours a week

just to be with ph.

Good luck, and keep us posted.

Beth

PS. My Pete had a terrible time with aggressions during (and after)

puberty. He has behaved like your ph during different periods of

his life. At 19 he is a much calmer kid. When behaviors start to

move backwards for him, I go right down the list that I wrote above.

[Guest guest]

Oh my God Holly you just made me CRY! I was just at my brother's house last

night talking to all of them about how badly I want Aubrey's to be evaluated at

the KKI.

My nephew is a pilot who grad from Embry Riddle a couple of years ago and just

logged in enough hours to apply for a job with a major airline. He said that if

I can wait til he gets flight benefits he'll help us get there. I was so

touched.

And now to know that we don't have to risk the neighborhood that the

Mc house is in is just too much!

Everything will fall into place. I can feel it. Yes, you are very blessed to be

so close to Dr. C.

THANK YOU SO MUCH FOR YOUR OFFER! Being from such a remote place it will be good

to know that there's a fellow parent who knows the area and would be willing to

house us and advise me!

WHOO HOO!!!!!!!!!!!!!!!!!!!!!!!

Desi

From: Beth <ppaul1columbus (DOT) rr.com>

Subject: Re:What should we do?

To: @yahoogrou ps.com

Date: Friday, August 14, 2009, 8:43 AM

Dena,

I remember from your previous posts that you were thinking looking

into medications for ph. You have also had some changes in your

home in the past year- a new baby, and the loss of ph's speech

therapist who was helping him use a communication device.

Based on what you told us is going on right now, this is what I would

recommend (in order of importance):

1. Thorough physical, beginning with a blood test for his thyroid

levels, checking for gut problems, including GERD (see Margaret's

recent post to you), molars, seasonal allergies, etc. You said you

were trying the GFCF diet- I don't remember if you had been

successful with that, if it was because he was having a lot of

diarrhea, or what. If he is having bowel problems, that needs to be

checked out. Don't forget ears, as some of our kids have high pain

thresholds and he could be having an ear infection and you might not

know it. If he has sleep problems, that needs to be checked out-

poor sleep plays havoc with our kids' behaviors.

2. Get him seen ASAP by a child psychiatrist (has he had a formal

diagnosis of autism? ). He should have a full work-up, especially to

make sure he has that autism dx and then to have a two-pronged plan:

-- of developing a functional behavior assessment (FBA) with a good

plan that your whole family can follow. That part will probably be

done with someone from the agency that you get services from- I am

unclear about how that works when you homeschool.

--have him evaluated as to what medications can help. I will be

blunt about this. You have a little baby and other children at home.

You are living with a child who can be harmful to all of you right

now. You do NOT want to expose your family to risk of injury just

because you don't want to consider medications. Family after family

on this list has been where you are. NO ONE wants to be in the

position of medicating children. But in your own words, ph is

angry all the time. One time you wrote that you had all stopped

going to church. There is no shame or failure in pursuing

medications that can help. It will probably take some time. Is your

son being seen by a pediatrician? In a DS clinic? An autism

clinic? You need the support NOW of someone who has seen lots and

lots of kids like ph and who can help you make a plan.

3. I know from several personal friends and from folks on this list

that homeschooling is a very personal choice. I know that people

make this decision for all kinds of reasons. I also know that in

some families, they may decide to have child go to a school program

if his needs can no longer be met at home. As a long distance

internet fly on the wall, I would like to offer the observation that

ph needs a different kind of school program that what you can

humanly provide right now. If he were to go to school, you would get

a much needed break and the rest of the family would also have a

chance to recharge their batteries.

4. Communication piece- speech therapy. Where do you stand in

getting those services again for him? Especially since he was making

progress on a device. If it looks like it's going to be a while-

say, more than a few weeks, you have even one more reason to consider

sending him to school.

5. Ask yourself, " Is what I am doing now working? If not, what are

the steps I can take to change it? And WHO ELSE CAN I ENGAGE TO HELP

WITH THOSE CHANGES?? Posing questions to the list is a first step.

6. I am not saying do not consider bio-medical steps- that is part of #1.

7. Do you have any ties with your local DS organization? I know it

can be tough to connect there when your son seems to be struggling so

much more, but they may have resources that you weren't aware of.

And, there may be families there who have similar issues, you just

never know!

8. Figure out some way you can recharge yourself, or you will crash

and burn. Even if it means hiring someone for a few hours a week

just to be with ph.

Good luck, and keep us posted.

Beth

PS. My Pete had a terrible time with aggressions during (and after)

puberty. He has behaved like your ph during different periods of

his life. At 19 he is a much calmer kid. When behaviors start to

move backwards for him, I go right down the list that I wrote above.

[Guest guest]

You are quite welcome Desi. We may not have a big beautiful house, but it is

home! ha! I know how hard it is to find a doctor you trust and to have one so

well respected so close, feels so good. Just want to pass those feelings on.

You will love Dr. Capone. There have been times that he has called me when I

have had an issue, and a few times he even made my appintments for us. How is

that for bed side manner?

One thing to thing about too is that KKI has a behavior clinic. We see Dr.

Grace (yes that is her name) when things are realy out of control. She

gives us hands on things to work on with Jake. She even counseled our daughter

Mia on how to get Jake to stop screaming every time she went into their

bathroom.

Hope to see you soon!

Holly

Re:What should we do?

To: @yahoogrou ps.com

Date: Friday, August 14, 2009, 8:43 AM

Dena,

I remember from your previous posts that you were thinking looking

into medications for ph. You have also had some changes in your

home in the past year- a new baby, and the loss of ph's speech

therapist who was helping him use a communication device.

Based on what you told us is going on right now, this is what I would

recommend (in order of importance):

1. Thorough physical, beginning with a blood test for his thyroid

levels, checking for gut problems, including GERD (see Margaret's

recent post to you), molars, seasonal allergies, etc. You said you

were trying the GFCF diet- I don't remember if you had been

successful with that, if it was because he was having a lot of

diarrhea, or what. If he is having bowel problems, that needs to be

checked out. Don't forget ears, as some of our kids have high pain

thresholds and he could be having an ear infection and you might not

know it. If he has sleep problems, that needs to be checked out-

poor sleep plays havoc with our kids' behaviors.

2. Get him seen ASAP by a child psychiatrist (has he had a formal

diagnosis of autism? ). He should have a full work-up, especially to

make sure he has that autism dx and then to have a two-pronged plan:

-- of developing a functional behavior assessment (FBA) with a good

plan that your whole family can follow. That part will probably be

done with someone from the agency that you get services from- I am

unclear about how that works when you homeschool.

--have him evaluated as to what medications can help. I will be

blunt about this. You have a little baby and other children at home.

You are living with a child who can be harmful to all of you right

now. You do NOT want to expose your family to risk of injury just

because you don't want to consider medications. Family after family

on this list has been where you are. NO ONE wants to be in the

position of medicating children. But in your own words, ph is

angry all the time. One time you wrote that you had all stopped

going to church. There is no shame or failure in pursuing

medications that can help. It will probably take some time. Is your

son being seen by a pediatrician? In a DS clinic? An autism

clinic? You need the support NOW of someone who has seen lots and

lots of kids like ph and who can help you make a plan.

3. I know from several personal friends and from folks on this list

that homeschooling is a very personal choice. I know that people

make this decision for all kinds of reasons. I also know that in

some families, they may decide to have child go to a school program

if his needs can no longer be met at home. As a long distance

internet fly on the wall, I would like to offer the observation that

ph needs a different kind of school program that what you can

humanly provide right now. If he were to go to school, you would get

a much needed break and the rest of the family would also have a

chance to recharge their batteries.

4. Communication piece- speech therapy. Where do you stand in

getting those services again for him? Especially since he was making

progress on a device. If it looks like it's going to be a while-

say, more than a few weeks, you have even one more reason to consider

sending him to school.

5. Ask yourself, " Is what I am doing now working? If not, what are

the steps I can take to change it? And WHO ELSE CAN I ENGAGE TO HELP

WITH THOSE CHANGES?? Posing questions to the list is a first step.

6. I am not saying do not consider bio-medical steps- that is part of #1.

7. Do you have any ties with your local DS organization? I know it

can be tough to connect there when your son seems to be struggling so

much more, but they may have resources that you weren't aware of.

And, there may be families there who have similar issues, you just

never know!

8. Figure out some way you can recharge yourself, or you will crash

and burn. Even if it means hiring someone for a few hours a week

just to be with ph.

Good luck, and keep us posted.

Beth

PS. My Pete had a terrible time with aggressions during (and after)

puberty. He has behaved like your ph during different periods of

his life. At 19 he is a much calmer kid. When behaviors start to

move backwards for him, I go right down the list that I wrote above.

[Guest guest]

I met Dr. Capone in Sacramento earlier this month, and he is very sweet!

Still waiting to hear about the UH study we applied for...

Desi

From: Beth <ppaul1columbus (DOT) rr.com>

Subject: Re:What should we do?

To: @yahoogrou ps.com

Date: Friday, August 14, 2009, 8:43 AM

Dena,

I remember from your previous posts that you were thinking looking

into medications for ph. You have also had some changes in your

home in the past year- a new baby, and the loss of ph's speech

therapist who was helping him use a communication device.

Based on what you told us is going on right now, this is what I would

recommend (in order of importance):

1. Thorough physical, beginning with a blood test for his thyroid

levels, checking for gut problems, including GERD (see Margaret's

recent post to you), molars, seasonal allergies, etc. You said you

were trying the GFCF diet- I don't remember if you had been

successful with that, if it was because he was having a lot of

diarrhea, or what. If he is having bowel problems, that needs to be

checked out. Don't forget ears, as some of our kids have high pain

thresholds and he could be having an ear infection and you might not

know it. If he has sleep problems, that needs to be checked out-

poor sleep plays havoc with our kids' behaviors.

2. Get him seen ASAP by a child psychiatrist (has he had a formal

diagnosis of autism? ). He should have a full work-up, especially to

make sure he has that autism dx and then to have a two-pronged plan:

-- of developing a functional behavior assessment (FBA) with a good

plan that your whole family can follow. That part will probably be

done with someone from the agency that you get services from- I am

unclear about how that works when you homeschool.

--have him evaluated as to what medications can help. I will be

blunt about this. You have a little baby and other children at home.

You are living with a child who can be harmful to all of you right

now. You do NOT want to expose your family to risk of injury just

because you don't want to consider medications. Family after family

on this list has been where you are. NO ONE wants to be in the

position of medicating children. But in your own words, ph is

angry all the time. One time you wrote that you had all stopped

going to church. There is no shame or failure in pursuing

medications that can help. It will probably take some time. Is your

son being seen by a pediatrician? In a DS clinic? An autism

clinic? You need the support NOW of someone who has seen lots and

lots of kids like ph and who can help you make a plan.

3. I know from several personal friends and from folks on this list

that homeschooling is a very personal choice. I know that people

make this decision for all kinds of reasons. I also know that in

some families, they may decide to have child go to a school program

if his needs can no longer be met at home. As a long distance

internet fly on the wall, I would like to offer the observation that

ph needs a different kind of school program that what you can

humanly provide right now. If he were to go to school, you would get

a much needed break and the rest of the family would also have a

chance to recharge their batteries.

4. Communication piece- speech therapy. Where do you stand in

getting those services again for him? Especially since he was making

progress on a device. If it looks like it's going to be a while-

say, more than a few weeks, you have even one more reason to consider

sending him to school.

5. Ask yourself, " Is what I am doing now working? If not, what are

the steps I can take to change it? And WHO ELSE CAN I ENGAGE TO HELP

WITH THOSE CHANGES?? Posing questions to the list is a first step.

6. I am not saying do not consider bio-medical steps- that is part of #1.

7. Do you have any ties with your local DS organization? I know it

can be tough to connect there when your son seems to be struggling so

much more, but they may have resources that you weren't aware of.

And, there may be families there who have similar issues, you just

never know!

8. Figure out some way you can recharge yourself, or you will crash

and burn. Even if it means hiring someone for a few hours a week

just to be with ph.

Good luck, and keep us posted.

Beth

PS. My Pete had a terrible time with aggressions during (and after)

puberty. He has behaved like your ph during different periods of

his life. At 19 he is a much calmer kid. When behaviors start to

move backwards for him, I go right down the list that I wrote above.