Re: living for my kids-Chris/long

[Guest guest]

Hi, -

I don't know if I have any words of comfort - just support and the old, " I

know what you mean! " My dh always teases me because it seems like most waking

moments I'm thinking about how to incorporate speech related things or sensory

things or PT things into Josh's everyday life. I go through toy sections of

stores to find toys that will be fun and stimulate speech or senses. I find

games to play that will challenge his physical abilities and his speech, family

members ask what to get for his birthday (tomorrow - 6 years old!) and I turn to

the Abilitations catalog or SLT catalogs rather than Toys R Us (although there

are great toys there as well). I am focused on Josh - hopefully not to the

extent that our daughter is hurt by it and she and I have talked about that off

and on over the years. I try to make a point of having a mom/daughter thing

every weekend - even if just baking in the kitchen - but time that's hers

without interruption from Josh or even my talking about

Josh. I try to make time for me when I can turn off my brain from kid-related

things - a few years back, for three years in a row, I trained to walk in the

Avon Breast Cancer 60-mile walk from Kenosha to Chicago - those training walks

were great (putting in about 50 miles a week, then 20 mile walks in one day

followed by another 20 mile walk the next over a weekend, etc.) - a wonderful

time to stop thinking about Josh/daughter/dh/work/older parents, etc. (I'm not

training anymore - but I do set aside 1/2 to 1 hour daily for either yoga,

walking, or exercise). It was my time to focus on my training (and avoiding

blisters!) and it really was very helpful to maintaining sanity. I try to make

time for dh and me - date night when we don't talk about Josh and dd - we talk

about us and our goals, work, other family, etc.

Your worries are very real and you can't run from them, you just need to

find a way to control them before you lose control. I made a point of saying,

in Josh's IEP meeting this a.m., that a long term goal we have for him is to

return to his home school (only a couple of blocks from home rather than on the

west side of our little town) fully included. No one responded to that but at

least it's out there. I don't know if Josh will be in special ed all the way

through school but I'm not going to give up on that goal for him. But even if

he is in special ed - oh well, he still can excel and do everything that other

kids will be doing. There was an article in our local paper about the sister of

our State's Attorney - she has CP and has been in a special ed program since

kindergarten. There were pictures of her attending the prom with another

special ed student (looked like what Josh might look like when he's older) - she

was in her scooter and her beau was very attentive to her

throughout the evening. She will be attending college next year and can't

decide between two really top notch schools. Josh can attend college - even if

there are still delays at that point, and I'm not saying I know whether there

wille be, there are colleges that have programs for developmentally delayed

adults where they can earn a degree.

Will he drive a car? - just ask Khalid and some other kids whose parents

write in to this email line. We don't know what the future will hold for our

kids - we can only provide for them the means to accomplish what we would like

them to accomplish - we can pray a lot, however you choose to pray and to

whomever - and we can be there every step of the way for them. If someone wants

to fault me for that, they can just go poop on themselves! (pardon my language)

Don't beat yourself up for loving your son, pat yourself on the back for the

courage you have to help him and instill in him the discipline to excel.

As for the hitting, have you tried helping him learn a sign or two to

express what he wants. With Josh, if he wants us to stop doing something so he

can do it (or simply to stop), we taught him the sign for stop (one we made up

actually) until he could say the word. If he's mad, we taught him another one

but now he says, " I'm mad! " and then we try to talk bit or " take a chill " (he

sits down and takes a few deep breaths until he gets control of himself again -

it's good for breath control which is a problem with apraxic kids). The hitting

is pretty much non-existent but it took a long time to get there. My patience

wore thin a lot and there were, admittedly, times I slapped his hand because he

hit the dog for no apparent reason or he grabbed my glasses off my face

(LensCrafters loves us) - until I learned ways to get control of myself so I

wouldn't do that anymore.

Hope this helped some and sorry it was so long. We all go through periods

of major self-doubt. It may be trite to say this, but have your dh or someone

watch the kids and take yourself to a movie, buy some popcorn, and just veg out

for a bit - the darkness of the theater and the escape into movieland will do

wonders, if only for a couple hours.

Good luck, Chris. If you ever want to talk, just call me (write me

privately and I'll get you my phone number).

Sherry

christinerome <christinerome@...> wrote:

I'm sorry about changing the subject from the very important IDEA

amendment. I'm very upset about it and hope I could do something

about it.

I'm having problems right now with thinking about my son all the

time. I worry constantly about him. He's 4 and still does not have

conversational speech. I am scard that he'll never talk, I'm scard

he'll never catch up with school work. will he be in special ed his

whole life. is special ed bad for him when he attends grade school?

I'm going crazy. do I do enough for him, is school doing enough?

ahhhhh!

I need some advice and support for this. how do I help myself to

help him. how do I keep a balance between him and me.

also I could use some help with his anger. He only does when I want

him to do something and when I make him do something. he hits but

does not hurt. can you help me figure out ways for me explain to

him about anger and ways to give him other aves to get out his anger?

he had limited speech and I think he understnads what he is doing.

thanks for listening

very worried mom of paul apraxic and daughter emma

chris

[Guest guest]

I think we've all been right there where you are. I know I am. Hope is

just turning 4 on the 30th of this month. Over the weekend I was almost in

tears because when she came to the garden and called to me instead of

hearing her say " ma " like she always does, she actually said " mama " clear as

a bell. Other than that, most of her vocabulary are parts of words. Her

latest big breakthrough was starting to put the ending sounds on some words.

Like now she actually says " right " instead of " rye " . To some people I'm

just pathetic that a little thing like a final " t " on a word gets me

excited. But they dont know how long I've waited to hear any multiple

sounds.

I too go through Toys R Us and think about each toy's therapudic value,

analyzing what areas that can be good for, and if it will hold her attention

to actually play with it. As a result my living room is over run with fine

motor skill toys (blocks, and wooden beads), pretend play toys (food,

dishes, and kitchen), problem solving toys (puzzles and games), almost

every Little People set they have on the market, enough books, crayons,

markers, pencils, paper, paints, and chaulk to outfit an art school, and a

Leap Pad library that is beginning to look like the rack at Toys R Us.

Do I worry about her? constantly. But I try not to let it rule everything

everyday. I do a lot of sewing and that helps me keep my sanity. And of

course the little stinker does her best to remind me that beyond all else,

she's just a kid. She wants to have fun, and she loves us. I get that

reminder every morning when she pounces on my bed and when I'm half awake,

pulls the blankets off and tickles me. (her dad taught her that one)

Just when I start thinking that her progress is pretty slow and wondering if

she'll ever talk even close to " normal " , she comes up with something new.

On a field trip last week with her class her teacher asked if I knew she

says " cool " . For her it comes out " cuul " because she cant form her mouth to

make " o " sounds, but it's pretty clear what she's saying and when they asked

her if she said " cool " she said " right " . Her teacher said she had the class

just cracking up. Here this little girl who hardly says anything was

watching as they added food coloring to frosting to change the color, and

she starts saying " wow. cool " .

One way or another, I know Hope will be ok. she'll find a way to do whatever

she wants, regardless of any speech issues that may linger. She just has

that kind of an independant streak. But in the meantime I do whatever I can

to help her along.

Toni

mom to Hope and Faith

website: www.merlins-avalon.com

quilts: www.merlins-avalon.com/designs.htm

I'm Doing it, You Can Too!!

http://twells.stayinhomeandlovinit.com

[Guest guest]

Hi Sherry,

thanks so much. I really needed this pick me up. you seem to know excactly

what I'm talking about.

you know once you start the sprial you keep spiraling.

thanks for the advice with the anger.

chris

[Guest guest]

Sherry ,

I know you weren't writing to me , but Here I am Crying my eyes out reading your

post . Thanks for putting into words the things I needed to hear . it is so hard

going day by day not knowing if my son will ever talk . I have only heard MOM a

handful of times . I don't know his future , but I am NOT ever going to give up

hope .

Who knows what my son or your son will be one day ??

And it will be be because we gave it our all , day in day out !!! Not to say it

almost KILLED us LOL!!

Take Care , Marie

[Guest guest]

Good luck, and remember to keep you chin up! I think it's safe to say

that pretty much everyone on this line has your feelings at least once a week if

not once a day ;-)

Sherry

Rome <christinerome@...> wrote:

Hi Sherry,

thanks so much. I really needed this pick me up. you seem to know excactly

what I'm talking about.

you know once you start the sprial you keep spiraling.

thanks for the advice with the anger.

chris