Being Different

March 25, 2004

kj,

was main streamed up until the 6th grade, but was pulled from the reg class to resource room for 1 on 1 help.When she started 6th grade she left our small town school for the county middle school.She had also lost her vision by this time so she was in special ed and taken to reg classes.When started 6th grade she was about 4th grade level in math,reading was maybe 3rd grade.By the time she got to high school all this was gone.We didn't have a teacher who knew anything about teaching a child with no vision.She went to Ky School for the Blind for several short courses and always did very well while there.The problem with going there was physically she was not able to stay more than 2 or 3 weeks at a time.By the time our county got a vision teacher, it took 5 years, was no longer even able to attend school.We did home bound with the VI for 2 years but then got where she couldn't handle that either.

As for the g-tube,it was probably 1 of the best things we ever did.Ashely NEVER would drink,stayed dehydrated all the time.It got where she was having to have IV's ever few weeks.Her doc decided that rather than just a port that could only be used for fluids, the tube was our best option since it could be used for meds and nutrition. We did get the port as well,thankfully it has never been needed.

Would Ash "qualify" for drivers ed or home ec if she were in public school ? If so why can't she take just those classes in public school and continue to attend private school.

It will probably depend on the size of your school district but it's something you might check into.

Good Luck,

,Mom to

---

From: sol8air@...

To: Mito

Sent: Thursday, March 25, 2004 2:19 AM

Subject: Being Different

is 21yrs old, 5' 2" tall and weights 203My Ash is 16, 5'2" and 97# on a good day. Over the years I've debated the G-tube. Sometimes I wish I'd chosen differently, in terms of quality of life, less arguments, etc. I know it's hard for her to eat when she's not hungry, it's just that it's so necessary. So far we only use BiPap at night. She too has very shallow respirations and loses lung volume without this technology. Did your mainstream in school? Mine is in private school the past 4 years (5th and 6th grade public school was a nightmare) but I am considering public high school for her last 2 years of HS as she is so much stronger now than she was. It may only be transient good health but I'd like her to enjoy what she can. She wants to take drivers ed and home ec, neither of which the private school have. Sports would never be an option for her with little/no head contro! l (walking is a new thing, she has never and will never "run"). Music and art she likes, though and she also has an interest in photography: all things she can do even if she ends up back in the wheelchair. Still, she says kids are often cruel to her especially in the public school. Heck I was "normal" as far as anyone knew and they were cruel to me. I understand, I just don't know how to help the hurt. kjmom to De-Arbra age 16 Please contact mito-owner with any problems or questions.

March 25, 2004

kj,

was main streamed up until the 6th grade, but was pulled from the reg class to resource room for 1 on 1 help.When she started 6th grade she left our small town school for the county middle school.She had also lost her vision by this time so she was in special ed and taken to reg classes.When started 6th grade she was about 4th grade level in math,reading was maybe 3rd grade.By the time she got to high school all this was gone.We didn't have a teacher who knew anything about teaching a child with no vision.She went to Ky School for the Blind for several short courses and always did very well while there.The problem with going there was physically she was not able to stay more than 2 or 3 weeks at a time.By the time our county got a vision teacher, it took 5 years, was no longer even able to attend school.We did home bound with the VI for 2 years but then got where she couldn't handle that either.

As for the g-tube,it was probably 1 of the best things we ever did.Ashely NEVER would drink,stayed dehydrated all the time.It got where she was having to have IV's ever few weeks.Her doc decided that rather than just a port that could only be used for fluids, the tube was our best option since it could be used for meds and nutrition. We did get the port as well,thankfully it has never been needed.

Would Ash "qualify" for drivers ed or home ec if she were in public school ? If so why can't she take just those classes in public school and continue to attend private school.

It will probably depend on the size of your school district but it's something you might check into.

Good Luck,

,Mom to

---

From: sol8air@...

To: Mito

Sent: Thursday, March 25, 2004 2:19 AM

Subject: Being Different

is 21yrs old, 5' 2" tall and weights 203My Ash is 16, 5'2" and 97# on a good day. Over the years I've debated the G-tube. Sometimes I wish I'd chosen differently, in terms of quality of life, less arguments, etc. I know it's hard for her to eat when she's not hungry, it's just that it's so necessary. So far we only use BiPap at night. She too has very shallow respirations and loses lung volume without this technology. Did your mainstream in school? Mine is in private school the past 4 years (5th and 6th grade public school was a nightmare) but I am considering public high school for her last 2 years of HS as she is so much stronger now than she was. It may only be transient good health but I'd like her to enjoy what she can. She wants to take drivers ed and home ec, neither of which the private school have. Sports would never be an option for her with little/no head contro! l (walking is a new thing, she has never and will never "run"). Music and art she likes, though and she also has an interest in photography: all things she can do even if she ends up back in the wheelchair. Still, she says kids are often cruel to her especially in the public school. Heck I was "normal" as far as anyone knew and they were cruel to me. I understand, I just don't know how to help the hurt. kjmom to De-Arbra age 16 Please contact mito-owner with any problems or questions.

March 25, 2004

kj,

was main streamed up until the 6th grade, but was pulled from the reg class to resource room for 1 on 1 help.When she started 6th grade she left our small town school for the county middle school.She had also lost her vision by this time so she was in special ed and taken to reg classes.When started 6th grade she was about 4th grade level in math,reading was maybe 3rd grade.By the time she got to high school all this was gone.We didn't have a teacher who knew anything about teaching a child with no vision.She went to Ky School for the Blind for several short courses and always did very well while there.The problem with going there was physically she was not able to stay more than 2 or 3 weeks at a time.By the time our county got a vision teacher, it took 5 years, was no longer even able to attend school.We did home bound with the VI for 2 years but then got where she couldn't handle that either.

As for the g-tube,it was probably 1 of the best things we ever did.Ashely NEVER would drink,stayed dehydrated all the time.It got where she was having to have IV's ever few weeks.Her doc decided that rather than just a port that could only be used for fluids, the tube was our best option since it could be used for meds and nutrition. We did get the port as well,thankfully it has never been needed.

Would Ash "qualify" for drivers ed or home ec if she were in public school ? If so why can't she take just those classes in public school and continue to attend private school.

It will probably depend on the size of your school district but it's something you might check into.

Good Luck,

,Mom to

---

From: sol8air@...

To: Mito

Sent: Thursday, March 25, 2004 2:19 AM

Subject: Being Different

is 21yrs old, 5' 2" tall and weights 203My Ash is 16, 5'2" and 97# on a good day. Over the years I've debated the G-tube. Sometimes I wish I'd chosen differently, in terms of quality of life, less arguments, etc. I know it's hard for her to eat when she's not hungry, it's just that it's so necessary. So far we only use BiPap at night. She too has very shallow respirations and loses lung volume without this technology. Did your mainstream in school? Mine is in private school the past 4 years (5th and 6th grade public school was a nightmare) but I am considering public high school for her last 2 years of HS as she is so much stronger now than she was. It may only be transient good health but I'd like her to enjoy what she can. She wants to take drivers ed and home ec, neither of which the private school have. Sports would never be an option for her with little/no head contro! l (walking is a new thing, she has never and will never "run"). Music and art she likes, though and she also has an interest in photography: all things she can do even if she ends up back in the wheelchair. Still, she says kids are often cruel to her especially in the public school. Heck I was "normal" as far as anyone knew and they were cruel to me. I understand, I just don't know how to help the hurt. kjmom to De-Arbra age 16 Please contact mito-owner with any problems or questions.

March 26, 2004

I teach high school and I agree students can be cruel. However most

of the time they ridicule or laugh because they are unsure of

themselves and how to react to someone who is different than the norm.

They are so unsure of themselves, that they don't know how to express

themselves other than laughing. I tell all of the parents of my

special needs students to have there students speak up in class, do a

5 minute presentation on what they have. Once student's know they

are understanding and compassionate. The majority of parents do not

take my advice and they sit back and struggle with the fact that

there child is being picked on. Those that do say it was hard to do

but well worth it. Their child fits in better because everyone knows

they can not control what is happening. You have to remember high

school students are just like anyone else, they fear the unknown.

Once they know it they can accept it.

Geri-Anne and Wyatt, complex I

> In a message dated 3/20/04 5:22:26 PM Pacific Standard Time,

> ldemoss@k... writes:

> > is 21yrs old, 5' 2 " tall and weights 203

> My Ash is 16, 5'2 " and 97# on a good day. Over the years I've

debated the

> G-tube. Sometimes I wish I'd chosen differently, in terms of

quality of life,

> less arguments, etc. I know it's hard for her to eat when she's not

hungry, it's

> just that it's so necessary. So far we only use BiPap at night. She

too has

> very shallow respirations and loses lung volume without this

technology. Did

> your mainstream in school? Mine is in private school the

past 4 years (5th

> and 6th grade public school was a nightmare) but I am considering

public high

> school for her last 2 years of HS as she is so much stronger now

than she

> was. It may only be transient good health but I'd like her to enjoy

what she can.

> She wants to take drivers ed and home ec, neither of which the

private school

> have. Sports would never be an option for her with little/no head

control

> (walking is a new thing, she has never and will never " run " ). Music

and art she

> likes, though and she also has an interest in photography: all

things she can

> do even if she ends up back in the wheelchair. Still, she says

kids are often

> cruel to her especially in the public school. Heck I was " normal "

as far as

> anyone knew and they were cruel to me. I understand, I just don't

know how to

> help the hurt.

>

> kj

> mom to De-Arbra age 16

March 28, 2004

kj

May be time to contact a parent advocacy group and/or the state dept of education.Under IDEA every

child is entitled to "a free and appropriate education in the least restrictive environment".I don't know what state your in but if they recieve federal funds,and they all do,they have to follow IDEA.

I HAD problems getting services for ,I would get them but was always fighting with the school. UNTIL I started going to parent training programs on disability issues.The more YOU know the more the school is willing to do.

Another thing you might do is contact your state representative,they could get you in touch with the dept for disability in your state.Vocational Rehad is another place that might be able to help.

is blind,and has enough hearing loss to qualitify for the Deaf/Blind Project thru the University of Ky.After she was put in their program,they came to IEP meetings and were available to help with any problems we had.

Just some suggestions that might be of help.

,Mom to

Original Message -----

From: sol8air@...

To: Mito

Sent: Sunday, March 28, 2004 2:11 PM

Subject: Being Different

In a message dated 3/26/04 10:18:35 AM Pacific Standard Time, Mito writes:

Would Ash "qualify" for drivers ed or home ec if she were in public school ? If so why can't she take just those classes in public school and continue to attend private school.Private school is $1200.00 a month. I just can't do it any more as long as I have a choice. She could do the drivers ed and home ec if her final foot surgery goes well this summer. She has come a very long way in a few short years (at one time she was non-ambulatory). A lot of disabled people drive, and she would likely not need any adaptive devices except some sort of lift for her wheelchair on the back (she'd never be able to load and unload the thing) as her endurance is the biggest thing now, she'd need to be able to bring her wheelchair on those days she still needs it. Her OT has been doing a sort-of cooking class with her and 3 others on Fridays and she likes it. She still can't reach above her shoulders (likely never will) but she has learned to adapt somewhat in the kitchen with help, and she wants to learn to sew, with which I for! see no problems. Her fine motor skills have always been good, her gross motor skills were her worst deficits. She has some mild vision problems but so far none serious. That is truly awful about the lack of services for visially impaired in your area, and how much your daughter has lost because of it. I am thankful that we have always lived in large metropolitan areas (even though I long for the country) and that somehow I have always managed to beg or borrow what I needed to get services (from age 3-7 I paid out of pocket 4x a week for PT/OT because Medicaid told me she was going to die anyway and they weren't going to waste money on a moribund child when they needed it for others who had a chance). And now, in a different state, because they can't seem to accomodate a child with physical disabilities who isn't mentally impaired, I pay $12K a year for her education which should be free. They're getting a fight from me this coming year for sure!! Either they mainstream her or they pay for the private school 100%. No "special classes", she is capable of doing the work if they just LET her. But she'll still be different ... She'll be different in ANY population the rest of her life, it's just something she needs to learn to deal with. kjPlease contact mito-owner with any problems or questions.

March 28, 2004

kj

May be time to contact a parent advocacy group and/or the state dept of education.Under IDEA every

child is entitled to "a free and appropriate education in the least restrictive environment".I don't know what state your in but if they recieve federal funds,and they all do,they have to follow IDEA.

I HAD problems getting services for ,I would get them but was always fighting with the school. UNTIL I started going to parent training programs on disability issues.The more YOU know the more the school is willing to do.

Another thing you might do is contact your state representative,they could get you in touch with the dept for disability in your state.Vocational Rehad is another place that might be able to help.

is blind,and has enough hearing loss to qualitify for the Deaf/Blind Project thru the University of Ky.After she was put in their program,they came to IEP meetings and were available to help with any problems we had.

Just some suggestions that might be of help.

,Mom to

Original Message -----

From: sol8air@...

To: Mito

Sent: Sunday, March 28, 2004 2:11 PM

Subject: Being Different

In a message dated 3/26/04 10:18:35 AM Pacific Standard Time, Mito writes:

Would Ash "qualify" for drivers ed or home ec if she were in public school ? If so why can't she take just those classes in public school and continue to attend private school.Private school is $1200.00 a month. I just can't do it any more as long as I have a choice. She could do the drivers ed and home ec if her final foot surgery goes well this summer. She has come a very long way in a few short years (at one time she was non-ambulatory). A lot of disabled people drive, and she would likely not need any adaptive devices except some sort of lift for her wheelchair on the back (she'd never be able to load and unload the thing) as her endurance is the biggest thing now, she'd need to be able to bring her wheelchair on those days she still needs it. Her OT has been doing a sort-of cooking class with her and 3 others on Fridays and she likes it. She still can't reach above her shoulders (likely never will) but she has learned to adapt somewhat in the kitchen with help, and she wants to learn to sew, with which I for! see no problems. Her fine motor skills have always been good, her gross motor skills were her worst deficits. She has some mild vision problems but so far none serious. That is truly awful about the lack of services for visially impaired in your area, and how much your daughter has lost because of it. I am thankful that we have always lived in large metropolitan areas (even though I long for the country) and that somehow I have always managed to beg or borrow what I needed to get services (from age 3-7 I paid out of pocket 4x a week for PT/OT because Medicaid told me she was going to die anyway and they weren't going to waste money on a moribund child when they needed it for others who had a chance). And now, in a different state, because they can't seem to accomodate a child with physical disabilities who isn't mentally impaired, I pay $12K a year for her education which should be free. They're getting a fight from me this coming year for sure!! Either they mainstream her or they pay for the private school 100%. No "special classes", she is capable of doing the work if they just LET her. But she'll still be different ... She'll be different in ANY population the rest of her life, it's just something she needs to learn to deal with. kjPlease contact mito-owner with any problems or questions.

March 29, 2004

kj

I was going to comment on "the lack os services" in our area but forgot it in my last post.

The entire population of our county is less than 15,000.Not much here except farm ground !! We're definitely "red necks".Or you could be call me a "river rat",since I live so close to the Ohio river.

recieved speech 5 days a week K-4,I was told it was not possible to get that much speech therapy,but she did !!!

When it was decided she needed OT and PT,we didn't have that available in the county either.I just called The Rehad Center in ville (about 45 miles from here) .The school not only had to pay for their service,they had to pay me to take her there.It didn't take long before they contracted with OT and PT service to come to the school.

They also had to pay every time went to Kentucky School for the Blind. Thats where I found out about VI's (Vision Instructors) I had never heard of this kind of teacher before.When we couldn't get 1 here,we really couldn't because they are in such short supply,I found a VI in Murray who was willing to see .She came here once a month and worked with and her teachers.I also took there once a week (105 miles each way) they had to pay for this too.

When I found out through KSB that a VI was coming to the ville area from Louisville I called our special ed director.I will have to say they got on the ball and hired her.

The first year she was here she had 2 students,the 2nd year she had a full schedule.

Ya know I was always told was the ONLY KID here who needed all these services,but after we would finally get them the other kids who also needed service just came out of the woodwork.....amazing don't you think!!!!!!!!

All in all what it amounts to is WE are the best.....sometimes only......advocate our kids have.If we're not willing to do whatever it takes.........who will?

Good Luck,

,Mom to

Being Different

In a message dated 3/26/04 10:18:35 AM Pacific Standard Time, Mito writes:

Would Ash "qualify" for drivers ed or home ec if she were in public school ? If so why can't she take just those classes in public school and continue to attend private school.Private school is $1200.00 a month. I just can't do it any more as long as I have a choice. She could do the drivers ed and home ec if her final foot surgery goes well this summer. She has come a very long way in a few short years (at one time she was non-ambulatory). A lot of disabled people drive, and she would likely not need any adaptive devices except some sort of lift for her wheelchair on the back (she'd never be able to load and unload the thing) as her endurance is the biggest thing now, she'd need to be able to bring her wheelchair on those days she still needs it. Her OT has been doing a sort-of cooking class with her and 3 others on Fridays and she likes it. She still can't reach above her shoulders (likely never will) but she has learned to adapt somewhat in the kitchen with help, and she wants to learn to sew, with which I for! see no problems. Her fine motor skills have always been good, her gross motor skills were her worst deficits. She has some mild vision problems but so far none serious. That is truly awful about the lack of services for visially impaired in your area, and how much your daughter has lost because of it. I am thankful that we have always lived in large metropolitan areas (even though I long for the country) and that somehow I have always managed to beg or borrow what I needed to get services (from age 3-7 I paid out of pocket 4x a week for PT/OT because Medicaid told me she was going to die anyway and they weren't going to waste money on a moribund child when they needed it for others who had a chance). And now, in a different state, because they can't seem to accomodate a child with physical disabilities who isn't mentally impaired, I pay $12K a year for her education which should be free. They're getting a fight from me this coming year for sure!! Either they mainstream her or they pay for the private school 100%. No "special classes", she is capable of doing the work if they just LET her. But she'll still be different ... She'll be different in ANY population the rest of her life, it's just something she needs to learn to deal with. kjPlease contact mito-owner with any problems or questions.

March 29, 2004