Re: About Angel

[Guest guest]

In a message dated 4/11/2003 9:51:41 PM Central Daylight Time,

bltk_mcnutt@... writes:

> Hello:)

>

> I dont know what to say except that been there with Tre' on the sleep

> deprivation, did it for a year or so with him. I worked with our

> school and we tried everything I believe known to man kind to help

> him and I heard about MHMR and ended up taking him there and put on

> meds as a last resort. I felt really bad about doing it, like I was

> a bad mother who could not help her son. He has been on meds since

> then and yes sleep is once again. What meds have you tried? I in no

> way advocate for meds unless its a last resort.

> I have to say this, that it seems that even with the " professionals "

> this is one area they do not talk about and something that I have

> heard from many parents " not sleeping " re: sleep deprivation.

They have tried as they say everything with Angel at this time she is on

clonidine and melatonin for bed time. The other meds didn't work not at all

I can't recall any of the names it's been a while since they put her back on

something for sleep but it's not working. We have tried everything the

school ignores the probem they say it's my problem not theirs. MHMRA well

Angel is on a 7 yr waiting list for that.

Tammy

[Guest guest]

In a message dated 4/11/2003 9:51:41 PM Central Daylight Time,

bltk_mcnutt@... writes:

> Hello:)

>

> I dont know what to say except that been there with Tre' on the sleep

> deprivation, did it for a year or so with him. I worked with our

> school and we tried everything I believe known to man kind to help

> him and I heard about MHMR and ended up taking him there and put on

> meds as a last resort. I felt really bad about doing it, like I was

> a bad mother who could not help her son. He has been on meds since

> then and yes sleep is once again. What meds have you tried? I in no

> way advocate for meds unless its a last resort.

> I have to say this, that it seems that even with the " professionals "

> this is one area they do not talk about and something that I have

> heard from many parents " not sleeping " re: sleep deprivation.

They have tried as they say everything with Angel at this time she is on

clonidine and melatonin for bed time. The other meds didn't work not at all

I can't recall any of the names it's been a while since they put her back on

something for sleep but it's not working. We have tried everything the

school ignores the probem they say it's my problem not theirs. MHMRA well

Angel is on a 7 yr waiting list for that.

Tammy

[Guest guest]

Hello:)

I dont know what to say except that been there with Tre' on the sleep

deprivation, did it for a year or so with him. I worked with our

school and we tried everything I believe known to man kind to help

him and I heard about MHMR and ended up taking him there and put on

meds as a last resort. I felt really bad about doing it, like I was

a bad mother who could not help her son. He has been on meds since

then and yes sleep is once again. What meds have you tried? I in no

way advocate for meds unless its a last resort.

I have to say this, that it seems that even with the " professionals "

this is one area they do not talk about and something that I have

heard from many parents " not sleeping " re: sleep deprivation.

>

>

> Hi Everyone,

>

>          We had Rebekah's ARD yesterday it went well.

>

> After the ARD though things got ugly over Angel.  You know for 7

years I have

> been trying and trying asking and asking to get help for Angel's

sleeping

> problems.  Doctors give her sleeping pills and that fails.  I have

told you

> guys but what I haven't told you guys is the seriousness of it.  I

have not

> told you how she goes to bed at 8 is up in 30 mins which means

because she

> needs supervision I get zero rest.  Day time is when I clean while

they are

> in school but during her sleeping problems I get very little done

sometimes

> because I end up crashing during the day.  So it sounds okay well

no not at

> all sometimes I crash before school so they miss their buses and I

don't

> drive.  Then they don't make it to school and when they do make it

to school

> I have missed the bus getting them off alot because of it.  Angel

has opened

> locks and oded on meds and it's not that I am neglecting them no

this goes on

> for moths and years and then my brain shuts down and I can wake up

to

> nothing.  I have told the school over and over I have taken her to

> neurologists, phycologists, phyciatrists and pediatricians for 7

years now

> not to mention the ER for stomach pumping.  She has opened all

kinds of locks

> in the pasts and got out of the house in the middle of the night

anyway this

> lady got ugly and said they would be calling the authorities and

removing the

> children well, you know I have seen well over 50 doctors over this

problem I

> have tried any and everything possible and safe now maybe they will

get off

> their bottoms and send help.  CPS has already come around they to

did

> nothing.  I told them there are only 2 options either send me

attending care

> or night time child care.  I can't pay for child care.  I have very

little

> income.  I have never told all of this here because no one but no

one seems

> to care or understand.  I know there are lots of you putting still

think yeah

> right well, this is my story want to see all the dr reports or

better yet

> come stay with me over night.  It her blindness and autism causing

this she

> fixates on baby dolls and her cat if they are not in bed with her

she won't

> sleep a wink and then her blindness well she can't see light so

when she

> wakes she assumes  it's day and the whole world should be awake she

is very

> noisy she screams if everything is not right any changes at all she

goes back

> to self mutilation (bitting herself and headbanging),  slamming

doors you

> name it which has nearly caused eviction not to mention cops and

cps banging

> at my door thank God now I know my rights where as at that time we

didn't

> even know she was autistic.  Well, things ae imporving but there

are still

> big problems.  Did I mention that this assistant principle shut the

door and

> went to accussing me of neglect and then saying if it happens again

I am

> calling the authorities well, now you have no idea how mad I got I

was ready

> to snap her into because I am constantly talking to the nurse the

counselor

> and all of Angel's teachers because of this.  And for her to falsly

accuse me

> of something that isn't true I am very mad.  I told her I have

plenty of room

> just come stay with me the night you will see.  She changed her

tune quickly

> but like all the rest of them said, " We don't have enough funding

to help! "  

> So what wait till I am in the hospital half dead from sleep

depresion and

> then take my children I don't think so.  Over and over I told her

all of my

> extended family is dead I have no one to help us.  My husband is

much older

> than me and his parents are elderly and sickly so they cannot

help.  Then

> this bright professional kept asking if I had any family member to

help after

> I kept telling her that I did not.  Grrrrrrrrrrrrr    So what do I

do she

> committed Character deformation or what ever it's called she

threated calling

> authorities for a well documented problem how do I prove this?  Do

I pursue

> it?  How do I get help for us help meaning attending care!  Someone

to come

> in my home to make sure Angel is safe and I get my rest.   Everyone

the

> school the doctors the commissions they all evade this question

except MHMRA

> but they have no funding and Angel is on a 7 year waiting list for

attending

> care and respite.  This has gone on for almost 8 years I can't do

another 7. 

> My perfect health is going even due to all of this.  The list of

problems

> this has caused goes on and on and never ends.  Can any of you

function for

> months at a time with have maybe 4 hours of sleep with in an entire

month? 

> Well, I have survided almost 8 years of this already.  But this

just has to

> end. 

>

> Tammy

>

>

>

>

[Guest guest]

Hello:)

I dont know what to say except that been there with Tre' on the sleep

deprivation, did it for a year or so with him. I worked with our

school and we tried everything I believe known to man kind to help

him and I heard about MHMR and ended up taking him there and put on

meds as a last resort. I felt really bad about doing it, like I was

a bad mother who could not help her son. He has been on meds since

then and yes sleep is once again. What meds have you tried? I in no

way advocate for meds unless its a last resort.

I have to say this, that it seems that even with the " professionals "

this is one area they do not talk about and something that I have

heard from many parents " not sleeping " re: sleep deprivation.

>

>

> Hi Everyone,

>

>          We had Rebekah's ARD yesterday it went well.

>

> After the ARD though things got ugly over Angel.  You know for 7

years I have

> been trying and trying asking and asking to get help for Angel's

sleeping

> problems.  Doctors give her sleeping pills and that fails.  I have

told you

> guys but what I haven't told you guys is the seriousness of it.  I

have not

> told you how she goes to bed at 8 is up in 30 mins which means

because she

> needs supervision I get zero rest.  Day time is when I clean while

they are

> in school but during her sleeping problems I get very little done

sometimes

> because I end up crashing during the day.  So it sounds okay well

no not at

> all sometimes I crash before school so they miss their buses and I

don't

> drive.  Then they don't make it to school and when they do make it

to school

> I have missed the bus getting them off alot because of it.  Angel

has opened

> locks and oded on meds and it's not that I am neglecting them no

this goes on

> for moths and years and then my brain shuts down and I can wake up

to

> nothing.  I have told the school over and over I have taken her to

> neurologists, phycologists, phyciatrists and pediatricians for 7

years now

> not to mention the ER for stomach pumping.  She has opened all

kinds of locks

> in the pasts and got out of the house in the middle of the night

anyway this

> lady got ugly and said they would be calling the authorities and

removing the

> children well, you know I have seen well over 50 doctors over this

problem I

> have tried any and everything possible and safe now maybe they will

get off

> their bottoms and send help.  CPS has already come around they to

did

> nothing.  I told them there are only 2 options either send me

attending care

> or night time child care.  I can't pay for child care.  I have very

little

> income.  I have never told all of this here because no one but no

one seems

> to care or understand.  I know there are lots of you putting still

think yeah

> right well, this is my story want to see all the dr reports or

better yet

> come stay with me over night.  It her blindness and autism causing

this she

> fixates on baby dolls and her cat if they are not in bed with her

she won't

> sleep a wink and then her blindness well she can't see light so

when she

> wakes she assumes  it's day and the whole world should be awake she

is very

> noisy she screams if everything is not right any changes at all she

goes back

> to self mutilation (bitting herself and headbanging),  slamming

doors you

> name it which has nearly caused eviction not to mention cops and

cps banging

> at my door thank God now I know my rights where as at that time we

didn't

> even know she was autistic.  Well, things ae imporving but there

are still

> big problems.  Did I mention that this assistant principle shut the

door and

> went to accussing me of neglect and then saying if it happens again

I am

> calling the authorities well, now you have no idea how mad I got I

was ready

> to snap her into because I am constantly talking to the nurse the

counselor

> and all of Angel's teachers because of this.  And for her to falsly

accuse me

> of something that isn't true I am very mad.  I told her I have

plenty of room

> just come stay with me the night you will see.  She changed her

tune quickly

> but like all the rest of them said, " We don't have enough funding

to help! "  

> So what wait till I am in the hospital half dead from sleep

depresion and

> then take my children I don't think so.  Over and over I told her

all of my

> extended family is dead I have no one to help us.  My husband is

much older

> than me and his parents are elderly and sickly so they cannot

help.  Then

> this bright professional kept asking if I had any family member to

help after

> I kept telling her that I did not.  Grrrrrrrrrrrrr    So what do I

do she

> committed Character deformation or what ever it's called she

threated calling

> authorities for a well documented problem how do I prove this?  Do

I pursue

> it?  How do I get help for us help meaning attending care!  Someone

to come

> in my home to make sure Angel is safe and I get my rest.   Everyone

the

> school the doctors the commissions they all evade this question

except MHMRA

> but they have no funding and Angel is on a 7 year waiting list for

attending

> care and respite.  This has gone on for almost 8 years I can't do

another 7. 

> My perfect health is going even due to all of this.  The list of

problems

> this has caused goes on and on and never ends.  Can any of you

function for

> months at a time with have maybe 4 hours of sleep with in an entire

month? 

> Well, I have survided almost 8 years of this already.  But this

just has to

> end. 

>

> Tammy

>

>

>

>

[Guest guest]

In a message dated 4/12/2003 10:21:50 AM Central Daylight Time,

jzsell@... writes:

> Hi Tammy,

> You mentioned you're on a waiting list for respite services--did you

> apply for respite services with UCP(United Cerebral Palsy) which is

> affiliated with MHMR? When our boys(both autistic) started receiving money

> from them--there was no wait and income was not a factor. I hope this

> hasn't changed, however, this year with all the budget cuts--I'm not sure

> if they will even accept new people into the program but I would definitely

> check into it. Also, have you ever applied for Non Educational Funding

> through your school district? If not, please check into that. You would

> need to contact a case worker within your school district(call your

> Central Office to get this info.--your principal and school personnel

> probably wouldn't know anything about this) Explain your desperate

> situation to them. Our case worker said every district in Texas has this

> money--the amounts that they give may differ--I'm not sure--but if they

> act like they don't know what you're talking about or that they don't offer

> this--contact me, please.

> One more thing...about your child's sleeping problem. One of our sons,

> Ben, used to wake up in the night and we were afraid that he would roam all

> around the house so we put a doorknob guard on the inside of the door and

> to this day, he still hasn't figured out how to open it! At least this

> allows US to get our sleep, even if he can't( and they apparently function

> better than us anyway on less sleep) You said yourdaughter can get into

> almost any lock, but what if you put a lock on the outside of her bedroom

> door--that way you can periodically check on her and you can get sleep and

> not have to watch her the entire night. Of course, this is assuming her

> room is perfectly safe for her to be in unattended, like Ben's is. This

> may sound extreme to some--but I feel desperate times call for desperate

> measures! Having that door guard on Ben's door also trained him to know

> that it is bedtime, and he is to stay in his room at night, even if he

> can't sleep. Oh also, I used to keep a baby monitor in my room(right next

> to my bed) so I could at least hear anything possibly suspicious

> happening.(I'm a light sleeper so I heard every little sound) I think

> this would be a MUST for your situation with your daughter--having a

> monitor. At least, you could sleep in your bed and hopefully, get MORE

> sleep at night. I feel that Ben's sleep problems got much better after we

> took him off of milk and other dairy products when he was about 3.

> Remember Tammy, if we don't take care of OURSELVES the best way we

> can...what good are we to our kids?? God Bless and I hope at least one

> suggestion here was helpful to you. Hope to hear some good news soon!

> a Sell

Again I went to the dr. I got a copy of that diet for autistic children. I

went against him and tried the diet. It did not work see I knew my child

enough I told you it's not for everyone instead I removed milk which has a

natural calming factor in it when warm and I removed all the things she was

eating though she isn't eating but maybe 5 bites a meal anymore. And guess

what she got very sick and very dehydrated which I knew would happen I just

tried it just to be able to say I tried everything. She went from size 7/8

to 4/5 and let me tell you I make sure she has more than enoug to eat.

Waiting list and income factor is now in place with mhmra but you know they

can't help me but they can take new cases and they can hold picknics and tell

me and their new folks that there is no funding that I have to wait 7 yrs to

get attending care and respite no forget about helping someone with ADHD or

what ever help the severe cases put the lesser severe on the waiting list

because in the mean time the more severe cases you put on hold are falling

apart cases like mine end up destroyed in cps hands you know even though I

have soooooooooooooo much documentation on it. And no those little door

things you mentioned she can open them in a heart beat. No i can't do it on

the outside of the door because if she has to go potty or if there is a fire

she both of them have to get out. I did the baby monitor and did lock them

in their room when they were smaller I had the camera monitor actually but

that was before they were potty trained and it was aweful it was just like

having them in the room with me I couldn't get any sleep no matter what I did

and just as I fell asleep because Angel was banging her head on the doors and

both were screaming a cops would come or cps because of the noise level in

the apartment complex I didn't know Angel was autistic at that time but we

would have been evicted from that complex if we had not moved instead. Which

now I know I have rights but they can't evict us over that but the cops going

as I fianlly get rest and usually as soon as the girls fianlly got to sleep

they these cops where knocking on the door and waking us up in spite of my

communicating with neighbors so they knew my children are disabled and they

make noise in spite of everything I do. As I said in my situatin there are

only 3 things that would remedy the situation that would be either put her in

a home which she really don't need, put her in over night child care their is

a 24 hour one close but I am not sure they would except Angel due to her

disabilities in the first place and 3 attending care so that their are eyes

to watch her while I am able to get rest. We having found a sleeping pill or

sleep aid yet that would work even prescription sleep aids prescribed by her

phyciatrist even along with melatoning doesn't work period and I have the

slow release 300s of melatonin so I am not giving her the weak cheap stuff

you know. Those by us at least 30 mins of sleep almost everynight without it

she would never sleep a wink but she isn't sleeping over 4 hours if even that

much. And I cannot let this child roam last time she got up and roamed I was

so tired she didn't wake me and she got up got a chair climbed on the med

cabinet (yes my blind autistic child) and actually got a hold of her med she

took the entire bottle minus 4 (which had been given to her already) pills it

was a new refill of her thyroid med I didn't notice until the next day

because she only takes it once a day so by then it was to late to have her

stomach pumped She woke her sister who can tell time and does help keep her

busy her sister who is only 5. So her sister was able to tell me what time

it was when Angel woke her up buy then she had already taken the med so there

is no telling how little sleep she got that night. I know I know yeah

right!! Come spend one night with me you will say your self I need attending

care.

Tammy

[Guest guest]

In a message dated 4/12/2003 10:21:50 AM Central Daylight Time,

jzsell@... writes:

> Hi Tammy,

> You mentioned you're on a waiting list for respite services--did you

> apply for respite services with UCP(United Cerebral Palsy) which is

> affiliated with MHMR? When our boys(both autistic) started receiving money

> from them--there was no wait and income was not a factor. I hope this

> hasn't changed, however, this year with all the budget cuts--I'm not sure

> if they will even accept new people into the program but I would definitely

> check into it. Also, have you ever applied for Non Educational Funding

> through your school district? If not, please check into that. You would

> need to contact a case worker within your school district(call your

> Central Office to get this info.--your principal and school personnel

> probably wouldn't know anything about this) Explain your desperate

> situation to them. Our case worker said every district in Texas has this

> money--the amounts that they give may differ--I'm not sure--but if they

> act like they don't know what you're talking about or that they don't offer

> this--contact me, please.

> One more thing...about your child's sleeping problem. One of our sons,

> Ben, used to wake up in the night and we were afraid that he would roam all

> around the house so we put a doorknob guard on the inside of the door and

> to this day, he still hasn't figured out how to open it! At least this

> allows US to get our sleep, even if he can't( and they apparently function

> better than us anyway on less sleep) You said yourdaughter can get into

> almost any lock, but what if you put a lock on the outside of her bedroom

> door--that way you can periodically check on her and you can get sleep and

> not have to watch her the entire night. Of course, this is assuming her

> room is perfectly safe for her to be in unattended, like Ben's is. This

> may sound extreme to some--but I feel desperate times call for desperate

> measures! Having that door guard on Ben's door also trained him to know

> that it is bedtime, and he is to stay in his room at night, even if he

> can't sleep. Oh also, I used to keep a baby monitor in my room(right next

> to my bed) so I could at least hear anything possibly suspicious

> happening.(I'm a light sleeper so I heard every little sound) I think

> this would be a MUST for your situation with your daughter--having a

> monitor. At least, you could sleep in your bed and hopefully, get MORE

> sleep at night. I feel that Ben's sleep problems got much better after we

> took him off of milk and other dairy products when he was about 3.

> Remember Tammy, if we don't take care of OURSELVES the best way we

> can...what good are we to our kids?? God Bless and I hope at least one

> suggestion here was helpful to you. Hope to hear some good news soon!

> a Sell

Again I went to the dr. I got a copy of that diet for autistic children. I

went against him and tried the diet. It did not work see I knew my child

enough I told you it's not for everyone instead I removed milk which has a

natural calming factor in it when warm and I removed all the things she was

eating though she isn't eating but maybe 5 bites a meal anymore. And guess

what she got very sick and very dehydrated which I knew would happen I just

tried it just to be able to say I tried everything. She went from size 7/8

to 4/5 and let me tell you I make sure she has more than enoug to eat.

Waiting list and income factor is now in place with mhmra but you know they

can't help me but they can take new cases and they can hold picknics and tell

me and their new folks that there is no funding that I have to wait 7 yrs to

get attending care and respite no forget about helping someone with ADHD or

what ever help the severe cases put the lesser severe on the waiting list

because in the mean time the more severe cases you put on hold are falling

apart cases like mine end up destroyed in cps hands you know even though I

have soooooooooooooo much documentation on it. And no those little door

things you mentioned she can open them in a heart beat. No i can't do it on

the outside of the door because if she has to go potty or if there is a fire

she both of them have to get out. I did the baby monitor and did lock them

in their room when they were smaller I had the camera monitor actually but

that was before they were potty trained and it was aweful it was just like

having them in the room with me I couldn't get any sleep no matter what I did

and just as I fell asleep because Angel was banging her head on the doors and

both were screaming a cops would come or cps because of the noise level in

the apartment complex I didn't know Angel was autistic at that time but we

would have been evicted from that complex if we had not moved instead. Which

now I know I have rights but they can't evict us over that but the cops going

as I fianlly get rest and usually as soon as the girls fianlly got to sleep

they these cops where knocking on the door and waking us up in spite of my

communicating with neighbors so they knew my children are disabled and they

make noise in spite of everything I do. As I said in my situatin there are

only 3 things that would remedy the situation that would be either put her in

a home which she really don't need, put her in over night child care their is

a 24 hour one close but I am not sure they would except Angel due to her

disabilities in the first place and 3 attending care so that their are eyes

to watch her while I am able to get rest. We having found a sleeping pill or

sleep aid yet that would work even prescription sleep aids prescribed by her

phyciatrist even along with melatoning doesn't work period and I have the

slow release 300s of melatonin so I am not giving her the weak cheap stuff

you know. Those by us at least 30 mins of sleep almost everynight without it

she would never sleep a wink but she isn't sleeping over 4 hours if even that

much. And I cannot let this child roam last time she got up and roamed I was

so tired she didn't wake me and she got up got a chair climbed on the med

cabinet (yes my blind autistic child) and actually got a hold of her med she

took the entire bottle minus 4 (which had been given to her already) pills it

was a new refill of her thyroid med I didn't notice until the next day

because she only takes it once a day so by then it was to late to have her

stomach pumped She woke her sister who can tell time and does help keep her

busy her sister who is only 5. So her sister was able to tell me what time

it was when Angel woke her up buy then she had already taken the med so there

is no telling how little sleep she got that night. I know I know yeah

right!! Come spend one night with me you will say your self I need attending

care.

Tammy

[Guest guest]

Hi Tammy,

You mentioned you're on a waiting list for respite services--did you apply

for respite services with UCP(United Cerebral Palsy) which is affiliated with

MHMR? When our boys(both autistic) started receiving money from them--there was

no wait and income was not a factor. I hope this hasn't changed, however, this

year with all the budget cuts--I'm not sure if they will even accept new people

into the program but I would definitely check into it. Also, have you ever

applied for Non Educational Funding through your school district? If not, please

check into that. You would need to contact a case worker within your school

district(call your Central Office to get this info.--your principal and school

personnel probably wouldn't know anything about this) Explain your desperate

situation to them. Our case worker said every district in Texas has this

money--the amounts that they give may differ--I'm not sure--but if they act

like they don't know what you're talking about or that they don't offer

this--contact me, please.

One more thing...about your child's sleeping problem. One of our sons, Ben,

used to wake up in the night and we were afraid that he would roam all around

the house so we put a doorknob guard on the inside of the door and to this day,

he still hasn't figured out how to open it! At least this allows US to get our

sleep, even if he can't( and they apparently function better than us anyway on

less sleep) You said yourdaughter can get into almost any lock, but what if you

put a lock on the outside of her bedroom door--that way you can periodically

check on her and you can get sleep and not have to watch her the entire night.

Of course, this is assuming her room is perfectly safe for her to be in

unattended, like Ben's is. This may sound extreme to some--but I feel

desperate times call for desperate measures! Having that door guard on Ben's

door also trained him to know that it is bedtime, and he is to stay in his room

at night, even if he can't sleep. Oh also, I used to keep a baby monitor in my

room(right next to my bed) so I could at least hear anything possibly

suspicious happening.(I'm a light sleeper so I heard every little sound) I

think this would be a MUST for your situation with your daughter--having a

monitor. At least, you could sleep in your bed and hopefully, get MORE sleep at

night. I feel that Ben's sleep problems got much better after we took him off

of milk and other dairy products when he was about 3. Remember Tammy, if we

don't take care of OURSELVES the best way we can...what good are we to our

kids?? God Bless and I hope at least one suggestion here was helpful to you.

Hope to hear some good news soon!

a Sell

About Angel

Hi Everyone,

We had Rebekah's ARD yesterday it went well.

After the ARD though things got ugly over Angel. You know for 7 years I have

been trying and trying asking and asking to get help for Angel's sleeping

problems. Doctors give her sleeping pills and that fails. I have told you

guys but what I haven't told you guys is the seriousness of it. I have not

told you how she goes to bed at 8 is up in 30 mins which means because she

needs supervision I get zero rest. Day time is when I clean while they are

in school but during her sleeping problems I get very little done sometimes

because I end up crashing during the day. So it sounds okay well no not at

all sometimes I crash before school so they miss their buses and I don't

drive. Then they don't make it to school and when they do make it to school

I have missed the bus getting them off alot because of it. Angel has opened

locks and oded on meds and it's not that I am neglecting them no this goes on

for moths and years and then my brain shuts down and I can wake up to

nothing. I have told the school over and over I have taken her to

neurologists, phycologists, phyciatrists and pediatricians for 7 years now

not to mention the ER for stomach pumping. She has opened all kinds of locks

in the pasts and got out of the house in the middle of the night anyway this

lady got ugly and said they would be calling the authorities and removing the

children well, you know I have seen well over 50 doctors over this problem I

have tried any and everything possible and safe now maybe they will get off

their bottoms and send help. CPS has already come around they to did

nothing. I told them there are only 2 options either send me attending care

or night time child care. I can't pay for child care. I have very little

income. I have never told all of this here because no one but no one seems

to care or understand. I know there are lots of you putting still think yeah

right well, this is my story want to see all the dr reports or better yet

come stay with me over night. It her blindness and autism causing this she

fixates on baby dolls and her cat if they are not in bed with her she won't

sleep a wink and then her blindness well she can't see light so when she

wakes she assumes it's day and the whole world should be awake she is very

noisy she screams if everything is not right any changes at all she goes back

to self mutilation (bitting herself and headbanging), slamming doors you

name it which has nearly caused eviction not to mention cops and cps banging

at my door thank God now I know my rights where as at that time we didn't

even know she was autistic. Well, things ae imporving but there are still

big problems. Did I mention that this assistant principle shut the door and

went to accussing me of neglect and then saying if it happens again I am

calling the authorities well, now you have no idea how mad I got I was ready

to snap her into because I am constantly talking to the nurse the counselor

and all of Angel's teachers because of this. And for her to falsly accuse me

of something that isn't true I am very mad. I told her I have plenty of room

just come stay with me the night you will see. She changed her tune quickly

but like all the rest of them said, " We don't have enough funding to help! "

So what wait till I am in the hospital half dead from sleep depresion and

then take my children I don't think so. Over and over I told her all of my

extended family is dead I have no one to help us. My husband is much older

than me and his parents are elderly and sickly so they cannot help. Then

this bright professional kept asking if I had any family member to help after

I kept telling her that I did not. Grrrrrrrrrrrrr So what do I do she

committed Character deformation or what ever it's called she threated calling

authorities for a well documented problem how do I prove this? Do I pursue

it? How do I get help for us help meaning attending care! Someone to come

in my home to make sure Angel is safe and I get my rest. Everyone the

school the doctors the commissions they all evade this question except MHMRA

but they have no funding and Angel is on a 7 year waiting list for attending

care and respite. This has gone on for almost 8 years I can't do another 7.

My perfect health is going even due to all of this. The list of problems

this has caused goes on and on and never ends. Can any of you function for

months at a time with have maybe 4 hours of sleep with in an entire month?

Well, I have survided almost 8 years of this already. But this just has to

end.

Tammy

[Guest guest]

Hi Tammy,

You mentioned you're on a waiting list for respite services--did you apply

for respite services with UCP(United Cerebral Palsy) which is affiliated with

MHMR? When our boys(both autistic) started receiving money from them--there was

no wait and income was not a factor. I hope this hasn't changed, however, this

year with all the budget cuts--I'm not sure if they will even accept new people

into the program but I would definitely check into it. Also, have you ever

applied for Non Educational Funding through your school district? If not, please

check into that. You would need to contact a case worker within your school

district(call your Central Office to get this info.--your principal and school

personnel probably wouldn't know anything about this) Explain your desperate

situation to them. Our case worker said every district in Texas has this

money--the amounts that they give may differ--I'm not sure--but if they act

like they don't know what you're talking about or that they don't offer

this--contact me, please.

One more thing...about your child's sleeping problem. One of our sons, Ben,

used to wake up in the night and we were afraid that he would roam all around

the house so we put a doorknob guard on the inside of the door and to this day,

he still hasn't figured out how to open it! At least this allows US to get our

sleep, even if he can't( and they apparently function better than us anyway on

less sleep) You said yourdaughter can get into almost any lock, but what if you

put a lock on the outside of her bedroom door--that way you can periodically

check on her and you can get sleep and not have to watch her the entire night.

Of course, this is assuming her room is perfectly safe for her to be in

unattended, like Ben's is. This may sound extreme to some--but I feel

desperate times call for desperate measures! Having that door guard on Ben's

door also trained him to know that it is bedtime, and he is to stay in his room

at night, even if he can't sleep. Oh also, I used to keep a baby monitor in my

room(right next to my bed) so I could at least hear anything possibly

suspicious happening.(I'm a light sleeper so I heard every little sound) I

think this would be a MUST for your situation with your daughter--having a

monitor. At least, you could sleep in your bed and hopefully, get MORE sleep at

night. I feel that Ben's sleep problems got much better after we took him off

of milk and other dairy products when he was about 3. Remember Tammy, if we

don't take care of OURSELVES the best way we can...what good are we to our

kids?? God Bless and I hope at least one suggestion here was helpful to you.

Hope to hear some good news soon!

a Sell

About Angel

Hi Everyone,

We had Rebekah's ARD yesterday it went well.

After the ARD though things got ugly over Angel. You know for 7 years I have

been trying and trying asking and asking to get help for Angel's sleeping

problems. Doctors give her sleeping pills and that fails. I have told you

guys but what I haven't told you guys is the seriousness of it. I have not

told you how she goes to bed at 8 is up in 30 mins which means because she

needs supervision I get zero rest. Day time is when I clean while they are

in school but during her sleeping problems I get very little done sometimes

because I end up crashing during the day. So it sounds okay well no not at

all sometimes I crash before school so they miss their buses and I don't

drive. Then they don't make it to school and when they do make it to school

I have missed the bus getting them off alot because of it. Angel has opened

locks and oded on meds and it's not that I am neglecting them no this goes on

for moths and years and then my brain shuts down and I can wake up to

nothing. I have told the school over and over I have taken her to

neurologists, phycologists, phyciatrists and pediatricians for 7 years now

not to mention the ER for stomach pumping. She has opened all kinds of locks

in the pasts and got out of the house in the middle of the night anyway this

lady got ugly and said they would be calling the authorities and removing the

children well, you know I have seen well over 50 doctors over this problem I

have tried any and everything possible and safe now maybe they will get off

their bottoms and send help. CPS has already come around they to did

nothing. I told them there are only 2 options either send me attending care

or night time child care. I can't pay for child care. I have very little

income. I have never told all of this here because no one but no one seems

to care or understand. I know there are lots of you putting still think yeah

right well, this is my story want to see all the dr reports or better yet

come stay with me over night. It her blindness and autism causing this she

fixates on baby dolls and her cat if they are not in bed with her she won't

sleep a wink and then her blindness well she can't see light so when she

wakes she assumes it's day and the whole world should be awake she is very

noisy she screams if everything is not right any changes at all she goes back

to self mutilation (bitting herself and headbanging), slamming doors you

name it which has nearly caused eviction not to mention cops and cps banging

at my door thank God now I know my rights where as at that time we didn't

even know she was autistic. Well, things ae imporving but there are still

big problems. Did I mention that this assistant principle shut the door and

went to accussing me of neglect and then saying if it happens again I am

calling the authorities well, now you have no idea how mad I got I was ready

to snap her into because I am constantly talking to the nurse the counselor

and all of Angel's teachers because of this. And for her to falsly accuse me

of something that isn't true I am very mad. I told her I have plenty of room

just come stay with me the night you will see. She changed her tune quickly

but like all the rest of them said, " We don't have enough funding to help! "

So what wait till I am in the hospital half dead from sleep depresion and

then take my children I don't think so. Over and over I told her all of my

extended family is dead I have no one to help us. My husband is much older

than me and his parents are elderly and sickly so they cannot help. Then

this bright professional kept asking if I had any family member to help after

I kept telling her that I did not. Grrrrrrrrrrrrr So what do I do she

committed Character deformation or what ever it's called she threated calling

authorities for a well documented problem how do I prove this? Do I pursue

it? How do I get help for us help meaning attending care! Someone to come

in my home to make sure Angel is safe and I get my rest. Everyone the

school the doctors the commissions they all evade this question except MHMRA

but they have no funding and Angel is on a 7 year waiting list for attending

care and respite. This has gone on for almost 8 years I can't do another 7.

My perfect health is going even due to all of this. The list of problems

this has caused goes on and on and never ends. Can any of you function for

months at a time with have maybe 4 hours of sleep with in an entire month?

Well, I have survided almost 8 years of this already. But this just has to

end.

Tammy

[Guest guest]

When you speak of MHMR's waiting list..are you specifically referring to United

Cerebral Palsy respite care? I just want you to be clear I am speaking of

something separate from MHMR but still under the " umbrella " of MHMR. Also, have

you ever checked into the Non educational school funds with your school

district? If you can collect that money it will help you out with hiring the

help that you so badly need. a

Re: About Angel

In a message dated 4/12/2003 10:21:50 AM Central Daylight Time,

jzsell@... writes:

> Hi Tammy,

> You mentioned you're on a waiting list for respite services--did you

> apply for respite services with UCP(United Cerebral Palsy) which is

> affiliated with MHMR? When our boys(both autistic) started receiving money

> from them--there was no wait and income was not a factor. I hope this

> hasn't changed, however, this year with all the budget cuts--I'm not sure

> if they will even accept new people into the program but I would definitely

> check into it. Also, have you ever applied for Non Educational Funding

> through your school district? If not, please check into that. You would

> need to contact a case worker within your school district(call your

> Central Office to get this info.--your principal and school personnel

> probably wouldn't know anything about this) Explain your desperate

> situation to them. Our case worker said every district in Texas has this

> money--the amounts that they give may differ--I'm not sure--but if they

> act like they don't know what you're talking about or that they don't offer

> this--contact me, please.

> One more thing...about your child's sleeping problem. One of our sons,

> Ben, used to wake up in the night and we were afraid that he would roam all

> around the house so we put a doorknob guard on the inside of the door and

> to this day, he still hasn't figured out how to open it! At least this

> allows US to get our sleep, even if he can't( and they apparently function

> better than us anyway on less sleep) You said yourdaughter can get into

> almost any lock, but what if you put a lock on the outside of her bedroom

> door--that way you can periodically check on her and you can get sleep and

> not have to watch her the entire night. Of course, this is assuming her

> room is perfectly safe for her to be in unattended, like Ben's is. This

> may sound extreme to some--but I feel desperate times call for desperate

> measures! Having that door guard on Ben's door also trained him to know

> that it is bedtime, and he is to stay in his room at night, even if he

> can't sleep. Oh also, I used to keep a baby monitor in my room(right next

> to my bed) so I could at least hear anything possibly suspicious

> happening.(I'm a light sleeper so I heard every little sound) I think

> this would be a MUST for your situation with your daughter--having a

> monitor. At least, you could sleep in your bed and hopefully, get MORE

> sleep at night. I feel that Ben's sleep problems got much better after we

> took him off of milk and other dairy products when he was about 3.

> Remember Tammy, if we don't take care of OURSELVES the best way we

> can...what good are we to our kids?? God Bless and I hope at least one

> suggestion here was helpful to you. Hope to hear some good news soon!

> a Sell

Again I went to the dr. I got a copy of that diet for autistic children. I

went against him and tried the diet. It did not work see I knew my child

enough I told you it's not for everyone instead I removed milk which has a

natural calming factor in it when warm and I removed all the things she was

eating though she isn't eating but maybe 5 bites a meal anymore. And guess

what she got very sick and very dehydrated which I knew would happen I just

tried it just to be able to say I tried everything. She went from size 7/8

to 4/5 and let me tell you I make sure she has more than enoug to eat.

Waiting list and income factor is now in place with mhmra but you know they

can't help me but they can take new cases and they can hold picknics and tell

me and their new folks that there is no funding that I have to wait 7 yrs to

get attending care and respite no forget about helping someone with ADHD or

what ever help the severe cases put the lesser severe on the waiting list

because in the mean time the more severe cases you put on hold are falling

apart cases like mine end up destroyed in cps hands you know even though I

have soooooooooooooo much documentation on it. And no those little door

things you mentioned she can open them in a heart beat. No i can't do it on

the outside of the door because if she has to go potty or if there is a fire

she both of them have to get out. I did the baby monitor and did lock them

in their room when they were smaller I had the camera monitor actually but

that was before they were potty trained and it was aweful it was just like

having them in the room with me I couldn't get any sleep no matter what I did

and just as I fell asleep because Angel was banging her head on the doors and

both were screaming a cops would come or cps because of the noise level in

the apartment complex I didn't know Angel was autistic at that time but we

would have been evicted from that complex if we had not moved instead. Which

now I know I have rights but they can't evict us over that but the cops going

as I fianlly get rest and usually as soon as the girls fianlly got to sleep

they these cops where knocking on the door and waking us up in spite of my

communicating with neighbors so they knew my children are disabled and they

make noise in spite of everything I do. As I said in my situatin there are

only 3 things that would remedy the situation that would be either put her in

a home which she really don't need, put her in over night child care their is

a 24 hour one close but I am not sure they would except Angel due to her

disabilities in the first place and 3 attending care so that their are eyes

to watch her while I am able to get rest. We having found a sleeping pill or

sleep aid yet that would work even prescription sleep aids prescribed by her

phyciatrist even along with melatoning doesn't work period and I have the

slow release 300s of melatonin so I am not giving her the weak cheap stuff

you know. Those by us at least 30 mins of sleep almost everynight without it

she would never sleep a wink but she isn't sleeping over 4 hours if even that

much. And I cannot let this child roam last time she got up and roamed I was

so tired she didn't wake me and she got up got a chair climbed on the med

cabinet (yes my blind autistic child) and actually got a hold of her med she

took the entire bottle minus 4 (which had been given to her already) pills it

was a new refill of her thyroid med I didn't notice until the next day

because she only takes it once a day so by then it was to late to have her

stomach pumped She woke her sister who can tell time and does help keep her

busy her sister who is only 5. So her sister was able to tell me what time

it was when Angel woke her up buy then she had already taken the med so there

is no telling how little sleep she got that night. I know I know yeah

right!! Come spend one night with me you will say your self I need attending

care.

Tammy

[Guest guest]

When you speak of MHMR's waiting list..are you specifically referring to United

Cerebral Palsy respite care? I just want you to be clear I am speaking of

something separate from MHMR but still under the " umbrella " of MHMR. Also, have

you ever checked into the Non educational school funds with your school

district? If you can collect that money it will help you out with hiring the

help that you so badly need. a

Re: About Angel

In a message dated 4/12/2003 10:21:50 AM Central Daylight Time,

jzsell@... writes:

> Hi Tammy,

> You mentioned you're on a waiting list for respite services--did you

> apply for respite services with UCP(United Cerebral Palsy) which is

> affiliated with MHMR? When our boys(both autistic) started receiving money

> from them--there was no wait and income was not a factor. I hope this

> hasn't changed, however, this year with all the budget cuts--I'm not sure

> if they will even accept new people into the program but I would definitely

> check into it. Also, have you ever applied for Non Educational Funding

> through your school district? If not, please check into that. You would

> need to contact a case worker within your school district(call your

> Central Office to get this info.--your principal and school personnel

> probably wouldn't know anything about this) Explain your desperate

> situation to them. Our case worker said every district in Texas has this

> money--the amounts that they give may differ--I'm not sure--but if they

> act like they don't know what you're talking about or that they don't offer

> this--contact me, please.

> One more thing...about your child's sleeping problem. One of our sons,

> Ben, used to wake up in the night and we were afraid that he would roam all

> around the house so we put a doorknob guard on the inside of the door and

> to this day, he still hasn't figured out how to open it! At least this

> allows US to get our sleep, even if he can't( and they apparently function

> better than us anyway on less sleep) You said yourdaughter can get into

> almost any lock, but what if you put a lock on the outside of her bedroom

> door--that way you can periodically check on her and you can get sleep and

> not have to watch her the entire night. Of course, this is assuming her

> room is perfectly safe for her to be in unattended, like Ben's is. This

> may sound extreme to some--but I feel desperate times call for desperate

> measures! Having that door guard on Ben's door also trained him to know

> that it is bedtime, and he is to stay in his room at night, even if he

> can't sleep. Oh also, I used to keep a baby monitor in my room(right next

> to my bed) so I could at least hear anything possibly suspicious

> happening.(I'm a light sleeper so I heard every little sound) I think

> this would be a MUST for your situation with your daughter--having a

> monitor. At least, you could sleep in your bed and hopefully, get MORE

> sleep at night. I feel that Ben's sleep problems got much better after we

> took him off of milk and other dairy products when he was about 3.

> Remember Tammy, if we don't take care of OURSELVES the best way we

> can...what good are we to our kids?? God Bless and I hope at least one

> suggestion here was helpful to you. Hope to hear some good news soon!

> a Sell

Again I went to the dr. I got a copy of that diet for autistic children. I

went against him and tried the diet. It did not work see I knew my child

enough I told you it's not for everyone instead I removed milk which has a

natural calming factor in it when warm and I removed all the things she was

eating though she isn't eating but maybe 5 bites a meal anymore. And guess

what she got very sick and very dehydrated which I knew would happen I just

tried it just to be able to say I tried everything. She went from size 7/8

to 4/5 and let me tell you I make sure she has more than enoug to eat.

Waiting list and income factor is now in place with mhmra but you know they

can't help me but they can take new cases and they can hold picknics and tell

me and their new folks that there is no funding that I have to wait 7 yrs to

get attending care and respite no forget about helping someone with ADHD or

what ever help the severe cases put the lesser severe on the waiting list

because in the mean time the more severe cases you put on hold are falling

apart cases like mine end up destroyed in cps hands you know even though I

have soooooooooooooo much documentation on it. And no those little door

things you mentioned she can open them in a heart beat. No i can't do it on

the outside of the door because if she has to go potty or if there is a fire

she both of them have to get out. I did the baby monitor and did lock them

in their room when they were smaller I had the camera monitor actually but

that was before they were potty trained and it was aweful it was just like

having them in the room with me I couldn't get any sleep no matter what I did

and just as I fell asleep because Angel was banging her head on the doors and

both were screaming a cops would come or cps because of the noise level in

the apartment complex I didn't know Angel was autistic at that time but we

would have been evicted from that complex if we had not moved instead. Which

now I know I have rights but they can't evict us over that but the cops going

as I fianlly get rest and usually as soon as the girls fianlly got to sleep

they these cops where knocking on the door and waking us up in spite of my

communicating with neighbors so they knew my children are disabled and they

make noise in spite of everything I do. As I said in my situatin there are

only 3 things that would remedy the situation that would be either put her in

a home which she really don't need, put her in over night child care their is

a 24 hour one close but I am not sure they would except Angel due to her

disabilities in the first place and 3 attending care so that their are eyes

to watch her while I am able to get rest. We having found a sleeping pill or

sleep aid yet that would work even prescription sleep aids prescribed by her

phyciatrist even along with melatoning doesn't work period and I have the

slow release 300s of melatonin so I am not giving her the weak cheap stuff

you know. Those by us at least 30 mins of sleep almost everynight without it

she would never sleep a wink but she isn't sleeping over 4 hours if even that

much. And I cannot let this child roam last time she got up and roamed I was

so tired she didn't wake me and she got up got a chair climbed on the med

cabinet (yes my blind autistic child) and actually got a hold of her med she

took the entire bottle minus 4 (which had been given to her already) pills it

was a new refill of her thyroid med I didn't notice until the next day

because she only takes it once a day so by then it was to late to have her

stomach pumped She woke her sister who can tell time and does help keep her

busy her sister who is only 5. So her sister was able to tell me what time

it was when Angel woke her up buy then she had already taken the med so there

is no telling how little sleep she got that night. I know I know yeah

right!! Come spend one night with me you will say your self I need attending

care.

Tammy

[Guest guest]

In a message dated 4/12/2003 1:42:38 PM Central Standard Time,

jzsell@... writes:

> When you speak of MHMR's waiting list..are you specifically referring to

> United Cerebral Palsy respite care? I just want you to be clear I am

> speaking of something separate from MHMR but still under the " umbrella " of

> MHMR. Also, have you ever checked into the Non educational school funds

> with your school district? If you can collect that money it will help you

> out with hiring the help that you so badly need. a

I don't know anything about the cerebral palsy part Angel doesn't have

cerebral palsy.

I have tried to go into the non educational fund. I got the information

through commission for the blind but she told me hold off as long as you can

on that because it's a one time shot and with the severity of Angel's case I

may need it even worse at a later time. Angel still being so young and so

tiny we don't know what autism and blindness will hold for her in the future

as to what emergencies she will have and what modifications if any that she

will need.

Tammy

[Guest guest]

In a message dated 4/12/2003 1:42:38 PM Central Standard Time,

jzsell@... writes:

> When you speak of MHMR's waiting list..are you specifically referring to

> United Cerebral Palsy respite care? I just want you to be clear I am

> speaking of something separate from MHMR but still under the " umbrella " of

> MHMR. Also, have you ever checked into the Non educational school funds

> with your school district? If you can collect that money it will help you

> out with hiring the help that you so badly need. a

I don't know anything about the cerebral palsy part Angel doesn't have

cerebral palsy.

I have tried to go into the non educational fund. I got the information

through commission for the blind but she told me hold off as long as you can

on that because it's a one time shot and with the severity of Angel's case I

may need it even worse at a later time. Angel still being so young and so

tiny we don't know what autism and blindness will hold for her in the future

as to what emergencies she will have and what modifications if any that she

will need.

Tammy

[Guest guest]

I think we all can understand that you do need attending care, some sort of

temporary hospitalization or crisis management which it is very hard to

imagine isn't available through either MHMR or medicaid. Have you talked

with the folks at Houston's Family to Family to see if any of them have

avenues to get these things?

One thing you mentioned that raised a flag in my mind is the thyroid

medicine. If this is for hypothyroid, are you sure it is what she needs?

Given the hyperactivity and difficulty sleeping you mentioned, I'd want to

really push the doctor to make sure she's on the right amount if you haven't

already done that.

Your story of Angel's night wanderings and your efforts to keep her safe at

night reminds me of what my mother-in-law has said about my husband at that

age. I think he's an undiagnosed Aspie who was, from most reports, pretty

hyper back then (though not as challenging as Angel, from what you describe).

She used to lock the door and lay in front of it in his room to try to sleep

because she was so exhausted. The things parents have to do to cope and stay

sane. I'll be sending you some prayers that you find the help you need soon.

Gaylen

[Guest guest]

I think we all can understand that you do need attending care, some sort of

temporary hospitalization or crisis management which it is very hard to

imagine isn't available through either MHMR or medicaid. Have you talked

with the folks at Houston's Family to Family to see if any of them have

avenues to get these things?

One thing you mentioned that raised a flag in my mind is the thyroid

medicine. If this is for hypothyroid, are you sure it is what she needs?

Given the hyperactivity and difficulty sleeping you mentioned, I'd want to

really push the doctor to make sure she's on the right amount if you haven't

already done that.

Your story of Angel's night wanderings and your efforts to keep her safe at

night reminds me of what my mother-in-law has said about my husband at that

age. I think he's an undiagnosed Aspie who was, from most reports, pretty

hyper back then (though not as challenging as Angel, from what you describe).

She used to lock the door and lay in front of it in his room to try to sleep

because she was so exhausted. The things parents have to do to cope and stay

sane. I'll be sending you some prayers that you find the help you need soon.

Gaylen

[Guest guest]

Our boys do not have Cerebral Palsy either(they're both autistic) however,

they've received this funding through MHMR for the past 5 years. Call MHMR and

ask about signing up with respite services through MHMR. As far as the Non Edu

funding--again, I want to make sure we're talking about the same thing...it is

not a " one time only shot " . The district will give you so much money to use

toward respite care the first year and the following year you receive more money

but not as much as you were given the first year. You have to determine how

desperate your need is at the moment whether or not you apply for it now. I

understand the advice you were given about waiting in case she has a more

serious need in the future, however, my motto is--take it now if its available

and you can use it because you never know if those funds will be AVAILABLE in

the future...look what's happening right now with our state funding.

a

Re: About Angel

In a message dated 4/12/2003 1:42:38 PM Central Standard Time,

jzsell@... writes:

> When you speak of MHMR's waiting list..are you specifically referring to

> United Cerebral Palsy respite care? I just want you to be clear I am

> speaking of something separate from MHMR but still under the " umbrella " of

> MHMR. Also, have you ever checked into the Non educational school funds

> with your school district? If you can collect that money it will help you

> out with hiring the help that you so badly need. a

I don't know anything about the cerebral palsy part Angel doesn't have

cerebral palsy.

I have tried to go into the non educational fund. I got the information

through commission for the blind but she told me hold off as long as you can

on that because it's a one time shot and with the severity of Angel's case I

may need it even worse at a later time. Angel still being so young and so

tiny we don't know what autism and blindness will hold for her in the future

as to what emergencies she will have and what modifications if any that she

will need.

Tammy

[Guest guest]

Our boys do not have Cerebral Palsy either(they're both autistic) however,

they've received this funding through MHMR for the past 5 years. Call MHMR and

ask about signing up with respite services through MHMR. As far as the Non Edu

funding--again, I want to make sure we're talking about the same thing...it is

not a " one time only shot " . The district will give you so much money to use

toward respite care the first year and the following year you receive more money

but not as much as you were given the first year. You have to determine how

desperate your need is at the moment whether or not you apply for it now. I

understand the advice you were given about waiting in case she has a more

serious need in the future, however, my motto is--take it now if its available

and you can use it because you never know if those funds will be AVAILABLE in

the future...look what's happening right now with our state funding.

a

Re: About Angel

In a message dated 4/12/2003 1:42:38 PM Central Standard Time,

jzsell@... writes:

> When you speak of MHMR's waiting list..are you specifically referring to

> United Cerebral Palsy respite care? I just want you to be clear I am

> speaking of something separate from MHMR but still under the " umbrella " of

> MHMR. Also, have you ever checked into the Non educational school funds

> with your school district? If you can collect that money it will help you

> out with hiring the help that you so badly need. a

I don't know anything about the cerebral palsy part Angel doesn't have

cerebral palsy.

I have tried to go into the non educational fund. I got the information

through commission for the blind but she told me hold off as long as you can

on that because it's a one time shot and with the severity of Angel's case I

may need it even worse at a later time. Angel still being so young and so

tiny we don't know what autism and blindness will hold for her in the future

as to what emergencies she will have and what modifications if any that she

will need.

Tammy

[Guest guest]

I receive non-ed funds every year for my son, . It has been

anywhere from 400 to 1100 dollars. This year it was 1100 dollars.

Contact the special ed office to get it. It has been very helpful in

paying for respite with my son.

Vicki

Re: About Angel

Our boys do not have Cerebral Palsy either(they're both autistic)

however, they've received this funding through MHMR for the past 5

years. Call MHMR and ask about signing up with respite services through

MHMR. As far as the Non Edu funding--again, I want to make sure we're

talking about the same thing...it is not a " one time only shot " . The

district will give you so much money to use toward respite care the

first year and the following year you receive more money but not as much

as you were given the first year. You have to determine how desperate

your need is at the moment whether or not you apply for it now. I

understand the advice you were given about waiting in case she has a

more serious need in the future, however, my motto is--take it now if

its available and you can use it because you never know if those funds

will be AVAILABLE in the future...look what's happening right now with

our state funding.

a

Re: About Angel

In a message dated 4/12/2003 1:42:38 PM Central Standard Time,

jzsell@... writes:

> When you speak of MHMR's waiting list..are you specifically

referring to

> United Cerebral Palsy respite care? I just want you to be clear I

am

> speaking of something separate from MHMR but still under the

" umbrella " of

> MHMR. Also, have you ever checked into the Non educational school

funds

> with your school district? If you can collect that money it will

help you

> out with hiring the help that you so badly need. a

I don't know anything about the cerebral palsy part Angel doesn't have

cerebral palsy.

I have tried to go into the non educational fund. I got the

information

through commission for the blind but she told me hold off as long as

you can

on that because it's a one time shot and with the severity of Angel's

case I

may need it even worse at a later time. Angel still being so young

and so

tiny we don't know what autism and blindness will hold for her in the

future

as to what emergencies she will have and what modifications if any

that she

will need.

Tammy

[Guest guest]

I receive non-ed funds every year for my son, . It has been

anywhere from 400 to 1100 dollars. This year it was 1100 dollars.

Contact the special ed office to get it. It has been very helpful in

paying for respite with my son.

Vicki

Re: About Angel

Our boys do not have Cerebral Palsy either(they're both autistic)

however, they've received this funding through MHMR for the past 5

years. Call MHMR and ask about signing up with respite services through

MHMR. As far as the Non Edu funding--again, I want to make sure we're

talking about the same thing...it is not a " one time only shot " . The

district will give you so much money to use toward respite care the

first year and the following year you receive more money but not as much

as you were given the first year. You have to determine how desperate

your need is at the moment whether or not you apply for it now. I

understand the advice you were given about waiting in case she has a

more serious need in the future, however, my motto is--take it now if

its available and you can use it because you never know if those funds

will be AVAILABLE in the future...look what's happening right now with

our state funding.

a

Re: About Angel

In a message dated 4/12/2003 1:42:38 PM Central Standard Time,

jzsell@... writes:

> When you speak of MHMR's waiting list..are you specifically

referring to

> United Cerebral Palsy respite care? I just want you to be clear I

am

> speaking of something separate from MHMR but still under the

" umbrella " of

> MHMR. Also, have you ever checked into the Non educational school

funds

> with your school district? If you can collect that money it will

help you

> out with hiring the help that you so badly need. a

I don't know anything about the cerebral palsy part Angel doesn't have

cerebral palsy.

I have tried to go into the non educational fund. I got the

information

through commission for the blind but she told me hold off as long as

you can

on that because it's a one time shot and with the severity of Angel's

case I

may need it even worse at a later time. Angel still being so young

and so

tiny we don't know what autism and blindness will hold for her in the

future

as to what emergencies she will have and what modifications if any

that she

will need.

Tammy

[Guest guest]

thank you so much for this letter it is true we all as parents are special

because we all must go the extra mile for our children and everyone on this

list has had to at least once go above and beyond that extra mile I am sure.

Oh and with the thyroid yes she was check for years every week every month

every 3 months now it is every six months. She is doing fine on synthroid.

I am learning something though I had no idea but my younger child who does

not have thyroid problems is also low tone. though she is special needs also

and in some ways really different she is very much normal in other ways. She

is still a little delayed in her gait and with cutting and things like that

but she is very much a 5 year old in everyother way. she is very disbled in

her behavors and speech I just wander if the tone runs in the family or if

it's part of the Rieger's syndrome that they share.

Also let me get this straight please. To get the non-educational funding all

I do right is go to the special needs administrators (or what every you call

them) of the school and tell them I need to apply? That's all right?

Oh yes I forgot to tell you guys the bad news with getting the school to

acknowledge the autism lol. Because she is blind with autism she cannot

attend camp for the blind through the lions club. Oh well she is at the age

for that stuff now but that's cool I think something better will come along.

Thank you guys for listening. I have gotta go and get rest while I can bye

for now.

Tammy

[Guest guest]

thank you so much for this letter it is true we all as parents are special

because we all must go the extra mile for our children and everyone on this

list has had to at least once go above and beyond that extra mile I am sure.

Oh and with the thyroid yes she was check for years every week every month

every 3 months now it is every six months. She is doing fine on synthroid.

I am learning something though I had no idea but my younger child who does

not have thyroid problems is also low tone. though she is special needs also

and in some ways really different she is very much normal in other ways. She

is still a little delayed in her gait and with cutting and things like that

but she is very much a 5 year old in everyother way. she is very disbled in

her behavors and speech I just wander if the tone runs in the family or if

it's part of the Rieger's syndrome that they share.

Also let me get this straight please. To get the non-educational funding all

I do right is go to the special needs administrators (or what every you call

them) of the school and tell them I need to apply? That's all right?

Oh yes I forgot to tell you guys the bad news with getting the school to

acknowledge the autism lol. Because she is blind with autism she cannot

attend camp for the blind through the lions club. Oh well she is at the age

for that stuff now but that's cool I think something better will come along.

Thank you guys for listening. I have gotta go and get rest while I can bye

for now.

Tammy

[Guest guest]

Hi Tammy,

You asked about the non educational funding...I would call your district's

central office and speak to someone in the area of special education. Just ask

them who you would talk to about applying for NonEducational funding. Explain

your situation and make sure you let them know how desperately you need this

funding. Chances are it wouldn't go into effect until next school year but you

need to apply now. Sounds like things are looking up for you at the

moment--hope it continues! Good luck with applying for the funding--our prayers

are with you. Keep us posted... a

Re: About Angel

thank you so much for this letter it is true we all as parents are special

because we all must go the extra mile for our children and everyone on this

list has had to at least once go above and beyond that extra mile I am sure.

Oh and with the thyroid yes she was check for years every week every month

every 3 months now it is every six months. She is doing fine on synthroid.

I am learning something though I had no idea but my younger child who does

not have thyroid problems is also low tone. though she is special needs also

and in some ways really different she is very much normal in other ways. She

is still a little delayed in her gait and with cutting and things like that

but she is very much a 5 year old in everyother way. she is very disbled in

her behavors and speech I just wander if the tone runs in the family or if

it's part of the Rieger's syndrome that they share.

Also let me get this straight please. To get the non-educational funding all

I do right is go to the special needs administrators (or what every you call

them) of the school and tell them I need to apply? That's all right?

Oh yes I forgot to tell you guys the bad news with getting the school to

acknowledge the autism lol. Because she is blind with autism she cannot

attend camp for the blind through the lions club. Oh well she is at the age

for that stuff now but that's cool I think something better will come along.

Thank you guys for listening. I have gotta go and get rest while I can bye

for now.

Tammy

[Guest guest]

Hi Tammy,

You asked about the non educational funding...I would call your district's

central office and speak to someone in the area of special education. Just ask

them who you would talk to about applying for NonEducational funding. Explain

your situation and make sure you let them know how desperately you need this

funding. Chances are it wouldn't go into effect until next school year but you

need to apply now. Sounds like things are looking up for you at the

moment--hope it continues! Good luck with applying for the funding--our prayers

are with you. Keep us posted... a

Re: About Angel

thank you so much for this letter it is true we all as parents are special

because we all must go the extra mile for our children and everyone on this

list has had to at least once go above and beyond that extra mile I am sure.

Oh and with the thyroid yes she was check for years every week every month

every 3 months now it is every six months. She is doing fine on synthroid.

I am learning something though I had no idea but my younger child who does

not have thyroid problems is also low tone. though she is special needs also

and in some ways really different she is very much normal in other ways. She

is still a little delayed in her gait and with cutting and things like that

but she is very much a 5 year old in everyother way. she is very disbled in

her behavors and speech I just wander if the tone runs in the family or if

it's part of the Rieger's syndrome that they share.

Also let me get this straight please. To get the non-educational funding all

I do right is go to the special needs administrators (or what every you call

them) of the school and tell them I need to apply? That's all right?

Oh yes I forgot to tell you guys the bad news with getting the school to

acknowledge the autism lol. Because she is blind with autism she cannot

attend camp for the blind through the lions club. Oh well she is at the age

for that stuff now but that's cool I think something better will come along.

Thank you guys for listening. I have gotta go and get rest while I can bye

for now.

Tammy

[Guest guest]

In a message dated 4/15/2003 11:23:48 PM Central Standard Time,

jzsell@... writes:

> Hi Tammy,

> You asked about the non educational funding...I would call your district's

> central office and speak to someone in the area of special education. Just

> ask them who you would talk to about applying for NonEducational funding.

> Explain your situation and make sure you let them know how desperately you

> need this funding. Chances are it wouldn't go into effect until next

> school year but you need to apply now. Sounds like things are looking up

> for you at the moment--hope it continues! Good luck with applying for the

> funding--our prayers are with you. Keep us posted... a

Hi a,

Thank you so much for your help. Grr, why it takes 7 years to get anyone to

even listen let allone take any action I just don't know.

Tammy

[Guest guest]

In a message dated 4/15/2003 11:23:48 PM Central Standard Time,

jzsell@... writes:

> Hi Tammy,

> You asked about the non educational funding...I would call your district's

> central office and speak to someone in the area of special education. Just

> ask them who you would talk to about applying for NonEducational funding.

> Explain your situation and make sure you let them know how desperately you

> need this funding. Chances are it wouldn't go into effect until next

> school year but you need to apply now. Sounds like things are looking up

> for you at the moment--hope it continues! Good luck with applying for the

> funding--our prayers are with you. Keep us posted... a

Hi a,

Thank you so much for your help. Grr, why it takes 7 years to get anyone to

even listen let allone take any action I just don't know.

Tammy