Re: Re: Anyone with SMA truly happy?/ Jeni

[Guest guest]

How's with the older " kids " ? I'm 36 and don't want to use my bi-pap!

> From: Jenifer Woody <mom2armybratz@...>

> Subject: Re: Re: Anyone with SMA truly happy?/

>

> Date: Sunday, May 25, 2008, 8:46 PM

> I believe that my daughter h (12) is as happy as any

> other 12 year old girl. When she gets moody I have

> to remind myself that ALL girls her age are dealing with

> the hormones and just thrive on drama in general. When it

> comes to dealing with SMA, h takes most things well. We

> have had moments over the years that have felt awful (little

> sister's first bike, etc) but have passed quickly. As a

> mom though, those moments were hard to cope with. Knowing

> that your baby is hurting and not being able to do anything

> about it is probably the worst experience I've ever

> encountered!!!

> If you'd like to have Tori e-mail h, she is pretty

> great about talking to the younger kids. Year before last

> at camp she actually had a long talk with 2 of the younger

> girls w/ SMA because they were refusing to wear their back

> braces and didn't want to use their bi-paps at

> night. After h's conversation with them they had

> no problems for the rest of camp! I was proud ;0)

> Anyway, her e-mail address is: prettylittlediva@...

>  

>  Love and Hugs

>          Jeni

>                               

>

>

>

>

> Re: Anyone with SMA truly happy?

>

>

> Thank you all for your responses, publicly and privately. I

> laughed and cried (in a good

> way) through most of them. I was glad that the majority of

> responses were positive. I

> think our family is in for a long haul through the pre-teen

> and teen years (with both girls).

> Hopefully as many of you mentioned once she comes to terms

> with her condition and

> moves past it rather than feeling stuck things will

> improve.

>

> It seems a huge amount of this situation came from a bad

> year at school. She has many

> friends, but a teacher who is ill, and retiring and

> basically not very present even when she

> is in the class. There was some substitute or other

> probably a full quarter of the time if

> not more, and to make matters worse Tori was afraid of her

> teacher though I don't think

> for any good reason. The class has an " ask three

> before me " policy where you are

> supposed to ask three students for help before the teacher

> and Tori was embarrassed at

> how often she had to ask other kids for stuff her teacher

> or an aide should have done. The

> school really has been a pain in the ass for years… long

> story short, they have failed to

> take her into consideration time and time again, scheduling

> fieldtrips and not requesting a

> disabled bus time and time again etc. etc. etc. To the

> point where we have had to have the

> most ridiculous things put into her IEP. An appropriate bus

> will be scheduled and such,

> then just this month they planned a trip to a swim center,

> didn't call me to ask any

> questions, didn't assign her an aide for the trip, and

> DIDN'T request either of the two

> busses be one with a lift. Makes me crazy! The good news is

> we have a much better

> principal and her teacher next year is her old kindergarten

> teacher who she really likes, so

> we have high hopes for 4th grade. And, school is out in two

> weeks and we have lots of fun

> stuff planned for the summer.

>

> Tori seems to really like her counselor, and you are right

> that I should probably see one

> too… I am not dealing well with seeing my child unhappy

> it is extremely hard for me.

>

> Thanks again for your comments, advice and encouragement!

>

>

>

>

>

>

>

>

[Guest guest]

She'd probably scold you!!!!

She's the funniest little Mommy type like that. She scolds ME for not taking

care of myself *LOL*

 

 Love and Hugs

         Jeni

                              

Re: Anyone with SMA truly happy?

>

>

> Thank you all for your responses, publicly and privately. I

> laughed and cried (in a good

> way) through most of them. I was glad that the majority of

> responses were positive. I

> think our family is in for a long haul through the pre-teen

> and teen years (with both girls).

> Hopefully as many of you mentioned once she comes to terms

> with her condition and

> moves past it rather than feeling stuck things will

> improve.

>

> It seems a huge amount of this situation came from a bad

> year at school. She has many

> friends, but a teacher who is ill, and retiring and

> basically not very present even when she

> is in the class. There was some substitute or other

> probably a full quarter of the time if

> not more, and to make matters worse Tori was afraid of her

> teacher though I don't think

> for any good reason. The class has an " ask three

> before me " policy where you are

> supposed to ask three students for help before the teacher

> and Tori was embarrassed at

> how often she had to ask other kids for stuff her teacher

> or an aide should have done. The

> school really has been a pain in the ass for years… long

> story short, they have failed to

> take her into consideration time and time again, scheduling

> fieldtrips and not requesting a

> disabled bus time and time again etc. etc. etc. To the

> point where we have had to have the

> most ridiculous things put into her IEP. An appropriate bus

> will be scheduled and such,

> then just this month they planned a trip to a swim center,

> didn't call me to ask any

> questions, didn't assign her an aide for the trip, and

> DIDN'T request either of the two

> busses be one with a lift. Makes me crazy! The good news is

> we have a much better

> principal and her teacher next year is her old kindergarten

> teacher who she really likes, so

> we have high hopes for 4th grade. And, school is out in two

> weeks and we have lots of fun

> stuff planned for the summer.

>

> Tori seems to really like her counselor, and you are right

> that I should probably see one

> too… I am not dealing well with seeing my child unhappy

> it is extremely hard for me.

>

> Thanks again for your comments, advice and encouragement!

>

>

>

>

>

>

>

>