Re: I am drownding in self pity here.....What do I do??

[Guest guest]

,

I would like to share my story, but instead I will say, that my experiences are exactly as 's. My son is in Kindergarten this year with the same delays as 's child and has a full time aide that is an LPN. He is also mainstreamed and this was a VERY hard decision for us but we are so happy with it. The kids LOVE and he enjoys being around them and watching them. The special ed in my district seems to be alot like "babisitting". I wanted to have fun at school and in the reg Kind class is where he is happy. The kids are great with him. He goes to the spec ed class when he needs his diaper changed or needs a quick re-charge nap so that he doesn't look like a baby to the kindergartners. He also gets some of his therapy there. Just my experience! Hope it might help!

Heidi Harmon

Mom to

602 S 16th Ave

Greenwood, Mo. 64034

(816)537-5586

Bzyheidi1@...

[Guest guest]

In our area there is a program called PLUK (Parents Lets Unite for Kids). This program provides advocates for parents with kids in school. They are up to date on all the regs where schools are concerned when it comes to kids with special needs.

Also there is your OPI (Office of Public Instruction) they can also help you with what would be best in regards to your daughter.

If there is a Child Development center in your area or close in another town, they also can help you.

Kath

[Guest guest]

HI ,

I hear your struggles. We really struggled with what to do for our son.He is know 7 years. He went to early intervention, special preschool - part-time .When it came time to make the decision about REAL SCHOOL, I was mortified. After going to the school and seeing the difference between mainstreaming and a totally special ed class, the decision was much easier. In a mainstreamed class has one on one care all day. It has been wonderful. is in a wheelchair , cortically blind, non-verbal, eats chopped regular food- but has to be fed. He is really for the most part healthy. He does take one seizure med and co Q10. I really feel like we made the best decision for him. He loves being around the other kids and they are very sweet to him.

When we were trying to decide, one of the therapist told me that,"There comes a time when needs to know his community and his community needs to know him." It really changed how I felt about protecting him from people..I hope one day the children that know him will be better kinder people and who knows maybe one of them will cure mitochondrial disorders.

He really hasn't progressed academically but he has in other ways.

I hope these thoughts help-- I have also always prayed that just the right people will take care of him, and we have had beautiful people.

Thanks,

I am drownding in self pity here.....What do I do??

Hello all, I am hving a terrible delimma here and I am looking for any suggestions and insight.

Miranda will be 5 in Dec and we have been doing a lot of thinking here about what to do in regards to her upcoming school year. Miranda does have a mitochondrial disease ( complex IV), she has developmental delays, fatigues quickly, she is totally tube fed, has controlled seizures ( takes meds) she is just generally unhealthy and takes 10 presciption meds throughout the day. She is getting services for therapy now. I have discussed my concerns with them and also her dr. The Dr said he felt a modified day would be more than likely best for her. The therapist seems to think she can be mainstreamed in a regular classroom. I really thought this was what I wanted for her too, till I started thinking about stuff.

She does go to a speech preschool 2 days a week for 2 1/2 hours and she does well there, BUT its a class with 5 kids, one teachers and two student teachers so there is so much one on one. Monday when I picked her up from school the teacher said she was having some concerns with Miranda. She said she just does not seem to be catching onto things like letters and numbers, counting, ABC's, ect. I do know she has no concept of what the alphabet is and she can SOMETIMES count to 4, its so inconsistant. The teacher said she has made no advancement acedemically, even since the last school year.

So now I am wondering, would it be in her best intrests to push to have her put in the multihandicapped class room. I am so afraid of pushing her to hard but in the same I am afraid I will be holding her back. My other though is to have her put in the reg class with a one on one aide just for her. They will need to make provisions anyways considering the tube feeding issues. She also cannot handle being in the heat for long periods and the school does NOT have air conditioning.

I appreciate any thoughts or insights anyone might have on this. Thank you

Please contact mito-owner with any problems or questions.

[Guest guest]

Ronan is only two years old, but I am involved in a local support

group which deals a lot with education and special needs kids so I

have thought a great deal about this already. We have decided to put

Ronan in main stream schooling (inclusion as they call it here). I

have three other children in the same school and I didn't want Ronan

going to a different school. I beleive that having a one-on -one

aide in the classrooom will actually give him the best of both

worlds. Lots of help and all the fun of being part of the class.

Ronan is profoundly dev. delayed, non-verbal and very limited

physcially. I believe the class will have much to gain from Ronan

as well. The decision is a hard one, my first instinct is

to " protect " Ronan by putting him in a segregated class, but after

much thought I realized that would not be a good example for my other

children. We never exclude him from any other things the rest of the

family does, why would we treat him differently for school. I know

you will make the decision that is best for your family and your

child. Good luck.

Take Care,

[Guest guest]

Hi

My aunt is a speical ed teacher and I know she told us with one of

our child that it is always best to put them in a reg class when ever

possible I know in Ca. you can have get a nurse with thm all day if needed

and have there day shortened if needed....We were going to put our older

dauhter put in a speical day class but my aunt talked me out of it and I am

glad she did....... Maybe you could go visit the classes and get an IEP

before school begins so you don,t have to worry so much Good Luck CYndi

>

>Reply-To: Mito

>To: " mito " <mito >

>Subject: I am drownding in self pity here.....What do I do??

>Date: Wed, 7 Nov 2001 19:33:57 -0500

>

> Hello all, I am hving a terrible delimma here and I am looking

>for any suggestions and insight.

> Miranda will be 5 in Dec and we have been doing a lot of

>thinking here about what to do in regards to her upcoming school year.

>Miranda does have a mitochondrial disease ( complex IV), she has

>developmental delays, fatigues quickly, she is totally tube fed, has

>controlled seizures ( takes meds) she is just generally unhealthy and takes

>10 presciption meds throughout the day. She is getting services for

>therapy now. I have discussed my concerns with them and also her dr. The Dr

>said he felt a modified day would be more than likely best for her. The

>therapist seems to think she can be mainstreamed in a regular classroom. I

>really thought this was what I wanted for her too, till I started thinking

>about stuff.

> She does go to a speech preschool 2 days a week for 2 1/2 hours and she

>does well there, BUT its a class with 5 kids, one teachers and two student

>teachers so there is so much one on one. Monday when I picked her up from

>school the teacher said she was having some concerns with Miranda. She said

>she just does not seem to be catching onto things like letters and numbers,

>counting, ABC's, ect. I do know she has no concept of what the alphabet is

>and she can SOMETIMES count to 4, its so inconsistant. The teacher said she

>has made no advancement acedemically, even since the last school year.

> So now I am wondering, would it be in her best intrests to push to have

>her put in the multihandicapped class room. I am so afraid of pushing her

>to hard but in the same I am afraid I will be holding her back. My other

>though is to have her put in the reg class with a one on one aide just for

>her. They will need to make provisions anyways considering the tube feeding

>issues. She also cannot handle being in the heat for long periods and the

>school does NOT have air conditioning.

> I appreciate any thoughts or insights anyone might have on this. Thank

>you

>

>

_________________________________________________________________

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[Guest guest]

,

Your post is almost a replica of one I wrote earlier this year! My daughter Gaby is 6, and has been going to a special needs school since she was 3 and a half. But this year we started mainstreaming her 1 day a week, and it is working well. Our aim is to go to full time mainstream. Gaby is wheelchaie dependant, g tube fed, on a ketogenic diet, has intellectual as well as physical disabilities, and little to no language. But she LOVES being amongst the children, and has settled into the kindergarden claasroom beautifully. The school staff and children have all been very accepting (so far). It was a big decision for us, and we are still debating whether to enroll Gaby full time or just extend the part time enrollment..I guess only time will tell.

Good luck, and follow your own heart here, on what it is YOU want.

ne

I am drownding in self pity here.....What do I do??

Hello all, I am hving a terrible delimma here and I am looking for any suggestions and insight.

Miranda will be 5 in Dec and we have been doing a lot of thinking here about what to do in regards to her upcoming school year. Miranda does have a mitochondrial disease ( complex IV), she has developmental delays, fatigues quickly, she is totally tube fed, has controlled seizures ( takes meds) she is just generally unhealthy and takes 10 presciption meds throughout the day. She is getting services for therapy now. I have discussed my concerns with them and also her dr. The Dr said he felt a modified day would be more than likely best for her. The therapist seems to think she can be mainstreamed in a regular classroom. I really thought this was what I wanted for her too, till I started thinking about stuff.

She does go to a speech preschool 2 days a week for 2 1/2 hours and she does well there, BUT its a class with 5 kids, one teachers and two student teachers so there is so much one on one. Monday when I picked her up from school the teacher said she was having some concerns with Miranda. She said she just does not seem to be catching onto things like letters and numbers, counting, ABC's, ect. I do know she has no concept of what the alphabet is and she can SOMETIMES count to 4, its so inconsistant. The teacher said she has made no advancement acedemically, even since the last school year.

So now I am wondering, would it be in her best intrests to push to have her put in the multihandicapped class room. I am so afraid of pushing her to hard but in the same I am afraid I will be holding her back. My other though is to have her put in the reg class with a one on one aide just for her. They will need to make provisions anyways considering the tube feeding issues. She also cannot handle being in the heat for long periods and the school does NOT have air conditioning.

I appreciate any thoughts or insights anyone might have on this. Thank you

Please contact mito-owner with any problems or questions.

[Guest guest]

,

My daughter is also 5 and currently in Kindergarten. After 2 years of a

self-contained special ed. preschool, we decided it might be best to do the

same for Kindergarten.

Her special ed. program has 6 other children with various issues, but they

all share one problem - they are mostly non-verbal. Savannah is also

non-verbal (only says hi, bye, mommy & daddy), but signs (limited) and is

extremely expressive (she gets her point across:) I believe Savannah will

one day speak (she may not have a large vocabulary), but with her little

non-verbal peers she has nothing to model. Therefore, I felt we needed to

look into mainstreaming her.

Savannah has high receptive skills, but is developmentally delayed.

Although I don't feel she understands the concept of ABCs or 123s, she is

starting to pick up the idea of counting. She knows what " 1 " is and will

give me one of something and will put one finger up.

I decided to have her mainstreamed with the regular ed. kids in the morning

and then she goes back into the special ed. room for the rest of the day

(she's in half day Kindergarten). In the morning she is with 20 other

" regular " kids who absolutely adore her. They are all learning sign

language and each child wants to be her little helper. She does the flag

ceremony with them (learning to put her hand over her heart:), calendar

time, story time, show & tell and then an activity page which usually is

something with the ABCs or 123s. They do hand over hand with Savannah when

tracing and writing the letters/numbers and explain what it is they are

doing and what it means. She really enjoys this and seems to be picking it

up.

Since this is working so well, we are now looking into mainstreaming her a

little more. In her special ed. class she receives her Physical,

Occupational and Speech Therapies, so we have to work around the therapy

schedules.

Savannah has a signing aide with her all day, this enables her to be in both

classes. She needs constant help and redirection.

So....I would highly recommend trying both regular ed. and special ed.

Ultimately I would like to have her completely mainstreamed, but for now

this is working!

Good luck,

Lipps

> >

> >Reply-To: Mito

> >To: " mito " <mito >

> >Subject: I am drownding in self pity here.....What do I do??

> >Date: Wed, 7 Nov 2001 19:33:57 -0500

> >

> > Hello all, I am hving a terrible delimma here and I am looking

> >for any suggestions and insight.

> > Miranda will be 5 in Dec and we have been doing a lot of

> >thinking here about what to do in regards to her upcoming school year.

> >Miranda does have a mitochondrial disease ( complex IV), she has

> >developmental delays, fatigues quickly, she is totally tube fed, has

> >controlled seizures ( takes meds) she is just generally unhealthy and

takes

> >10 presciption meds throughout the day. She is getting services for

> >therapy now. I have discussed my concerns with them and also her dr. The

Dr

> >said he felt a modified day would be more than likely best for her. The

> >therapist seems to think she can be mainstreamed in a regular classroom.

I

> >really thought this was what I wanted for her too, till I started

thinking

> >about stuff.

> > She does go to a speech preschool 2 days a week for 2 1/2 hours and

she

> >does well there, BUT its a class with 5 kids, one teachers and two

student

> >teachers so there is so much one on one. Monday when I picked her up from

> >school the teacher said she was having some concerns with Miranda. She

said

> >she just does not seem to be catching onto things like letters and

numbers,

> >counting, ABC's, ect. I do know she has no concept of what the alphabet

is

> >and she can SOMETIMES count to 4, its so inconsistant. The teacher said

she

> >has made no advancement acedemically, even since the last school year.

> > So now I am wondering, would it be in her best intrests to push to

have

> >her put in the multihandicapped class room. I am so afraid of pushing her

> >to hard but in the same I am afraid I will be holding her back. My other

> >though is to have her put in the reg class with a one on one aide just

for

> >her. They will need to make provisions anyways considering the tube

feeding

> >issues. She also cannot handle being in the heat for long periods and the

> >school does NOT have air conditioning.

> > I appreciate any thoughts or insights anyone might have on this.

Thank

> >you

> >

> >

[Guest guest]

First get a letter from MD about heat intolerance and that she requires air

conditioning and they will have to get her one in her classroom if it is on

health part of IEP.

Janelle

[Guest guest]

,

They not only will have to get AC in the classroom but I made them get a hadicapped bus with AC for . So push until they do it!

Have a great week!

Horsley

Mom to 11

leehorsley@...

or

jesuslover@...

[Guest guest]

I just want to say it took me 2 years to fight for AC in the class room, but know that winter is almost here we have AC in my children class room. Don't give up Vange Re: I am drownding in self pity here.....What do I do?? First get a letter from MD about heat intolerance and that she requires airconditioning and they will have to get her one in her classroom if it is onhealth part of IEP.Janelle