Re: venting

[Guest guest]

Keisha and Clay,

Both of your posts moved me so much. Keisha, many of us can relate so well to

what you are experiencing...we have a long way to go in providing quality

services for our older kids....it's scary. Clay, that story you shared about

the woman who approached your wife in Macaroni Grill...well, that just moved me

to tears. What a beautiful gesture on her part--I thank God for people like

her. I don't know if she realizes the impact of what she did for your

wife....and me, just reading it. Thank you so much for sharing that story with

us.

a

Re: venting

Hi Keisha -

Your note is actually a great inspiration for me. You have been

dealing with severe issues on a magnitude which most people can not

imagine, and you've been playing this game for 10 years longer than I

have. I am encouraged to know that if my kids don't improve

significantly over the next 10 years, that's OK. You demonstrate

daily that, though it is incredibly difficult, life still continues

and can be managed.

I can't help but wonder how you and your son have influenced others

in ways you may not even know. You encountered a couple of stupid

people at Walgreens tonight. Hopefully, because of your

conversation, they are no longer stupid. Perhaps that will manifest

itself positively the next time they meet someone different from

themselves.

I'm sure you've experienced the glares of strangers in public; I know

we have. We were at Macaroni Grill on Mother's Day last year when

our twins decided to get upset. People stared, but that's not

unusual. What stuck out was the elderly woman at the table next to

ours, celebrating Mother's Day with her family full of typical kids.

When their meal was over and they started to leave, this grandmother

walked over to my wife, placed her hand on Carole's shoulder, and

gently said " you're doing a great job " . Then she walked away.

Tucked away among the stares of the stupid are people like that

grandmother. They may not have the chance to come up and offer

comfort, but they see you working with your son, and are truly

impressed. So am I.

Thanks for sharing. - Clay

> >

> > , you are absolutely right. My wife and I have had that same

> > anguish for the last five years. When it comes to this thing

> called

> > an Autism Spectrum Disorder, people tend to focus on

the " austism "

> > part rather than the " spectrum " part.

> >

> > I think it's easier for most people, including reporters, to

> relate

> > to higher functioning children with autism because those kids

> > are " soooo close to normal " . Successful children were within

> reach

> > of those parents, but they missed it by such a slim margin. It's

> > easier for parents with only traditional kids to empathize with

> these

> > families, as they closely resemble their own.

> >

> > Our kids are at the far opposite end of the spectrum. I refer to

> our

> > family as " the circus " because that's exactly what we look like

as

> we

> > walk through the mall, a restaurant, or church. Our next door

> > neighbors still tense up when they see our kids, as though their

> > condition is contageous. I've heard that typical parents can

hire

> > people called " babysitters " to watch their children for an

> evening.

> > WOW, where could we find some of those!? Our family doesn't

> resemble

> > anyone in the common world.

> >

> > We have two eight year olds with no speech, are not potty

trained,

> > incapable of dressing themselves, whose only fun is to bounce a

> ball

> > all day or sit in the bathtub, and who cry for hours on end.

> Unless

> > someone has personally lived with these issues, it is absolutely

> > impossible for them to understand.

> >

> > OK, I'm coming out of the closet. I can't relate to most people

> who

> > post on autism boards either, and the education issues are a

> perfect

> > example. Intellectually I can understand why a parent with a

> higher-

> > functioning child would hate their school system because its not

> > providing a particular type of instruction, or didn't stop some

> > teasing on the playground. Emotionally, however, the Boatrights

> love

> > our school because they willingly open their doors to our low-

> > functioning children everyday. Yes, it's taken 50 years of

parents

> > fighting for that to occur, but thank God it has. That's why I

> > support the organizations which helped make that happen.

> >

> > All that said, here's what I know. God created all of us, and He

> > doesn't make mistakes (Psalm 139:13-16). God can use all of us,

> > including people with disabilities, for His purpose ( 9:1-

3).

> > Parents dealing with severe challenges do so in order that their

> > faith " may proved genuine and may result in praise, glory, and

> honor

> > when Jesus Christ is revealed. " (1 1:6-7). Sadly, not many

> > reporters are going to tell that story either.

> >

> > Thanks for venting. I feel better, too! - Clay

> >

> > PS: This diatribe was approved by my wife.

> >

>

[Guest guest]

I just had a thought. Have any of you ever advertised for volunteers to

help you out? It might be worth a try.

Somewhere there are great people wondering what they could do to help

someone, but not knowing where to look.

And with all these news stories about autism right now, it might be a good

time to try.

Marilyn

[Guest guest]

Great idea! I need volunteers for developing respite programs! HA!

She's right though...this is PRIME Volunteer picking time...and

fundraising! ; )

>

> I just had a thought. Have any of you ever advertised for

volunteers to

> help you out? It might be worth a try.

> Somewhere there are great people wondering what they could do to help

> someone, but not knowing where to look.

> And with all these news stories about autism right now, it might be a

good

> time to try.

>

> Marilyn

>

[Guest guest]

Prior to the proclamation at the City of Ft. Worth this past Tuesday I

sent out numerous emails out trying to get people to join me or

email/call councilman Burns. I know of one mother who emailed

and the total number of people who went with me was 3. One of them was

my best friend and the other one was my mother. So, only 1 person in

the area responded and actually made it. By the way, we went to lunch

at P. F. Changs and had a great time afterwards!

>

> I just had a thought. Have any of you ever advertised for

volunteers to

> help you out? It might be worth a try.

> Somewhere there are great people wondering what they could do to help

> someone, but not knowing where to look.

> And with all these news stories about autism right now, it might be a

good

> time to try.

>

> Marilyn

>

[Guest guest]

Prior to the proclamation at the City of Ft. Worth this past Tuesday I

sent out numerous emails out trying to get people to join me or

email/call councilman Burns. I know of one mother who emailed

and the total number of people who went with me was 3. One of them was

my best friend and the other one was my mother. So, only 1 person in

the area responded and actually made it. By the way, we went to lunch

at P. F. Changs and had a great time afterwards!

>

> I just had a thought. Have any of you ever advertised for

volunteers to

> help you out? It might be worth a try.

> Somewhere there are great people wondering what they could do to help

> someone, but not knowing where to look.

> And with all these news stories about autism right now, it might be a

good

> time to try.

>

> Marilyn

>

[Guest guest]

Thank you so ver much for that Clay. I guess that night I was really

in rare form after Walgreens. But just to let you know, life isn't

so bad. Maybe because I know of no other (except the life when he

used to talk & before he slipped into this " thing " ). Overall- it's

challenging, but we have a good time. He goes everywhere and I do

mean everywhere. We eat out at nice resturants every night, to the

mall and he comes to work with me everyday when I pick him up from

school and my customers just love him. They are always looking for

him and everyone knows if they wait too late- he's in the back fast

asleep on his futon. If we're upfront talking and hear a

mysterious " pop " we automatically know he's popped the top of

another can of tea. We actually call him Mr Royalty. I mean he lives

a charmed life- I'm a SLAVE! And that's okay. Yes I'm trying to make

him as independant as possible, but I've actually made it harder

because the fella is quite spoiled (BIG MISTAKE) but still we try. I

will always believe in him. There are good days and not so good days

and he is well adjusted and he tries hard, but it can be tough for

him as well, because he knows.

One thing I can say about most of us parents is that we are

resilient and extremely compassionate, patient and loving. We try to

see the best in everything and look down in nothing. And you like me

have learned these things from our children. I have learned a most

gracious lesson in life and take nothing for granted. I am stronger

than ever and my faith is high, high, high. I wouldn't want anyone

else to ne his parent. I am so honored to be the one. These babies

are a blessing from God and believe me when I tell you God knows

what HE's doing. HE won't put more on you than you can bear and HE

gives us what we need to be alright. It is not an easy task, but HE

chooses the right people for the work. Feel priviledged that you as

well as I, were chosen by God Himself. You said so yourself: Parents

dealing with severe challenges do so in order that their faith " may

be proved genuine and may result in praise, glory, and honor when

Jesus Christ is revealed. " (1 1:6-7). ~~Consider It Done.

Keisha W.

> > >

> > > , you are absolutely right. My wife and I have had that

same

> > > anguish for the last five years. When it comes to this thing

> > called

> > > an Autism Spectrum Disorder, people tend to focus on

> the " austism "

> > > part rather than the " spectrum " part.

> > >

> > > I think it's easier for most people, including reporters, to

> > relate

> > > to higher functioning children with autism because those kids

> > > are " soooo close to normal " . Successful children were within

> > reach

> > > of those parents, but they missed it by such a slim margin.

It's

> > > easier for parents with only traditional kids to empathize

with

> > these

> > > families, as they closely resemble their own.

> > >

> > > Our kids are at the far opposite end of the spectrum. I refer

to

> > our

> > > family as " the circus " because that's exactly what we look

like

> as

> > we

> > > walk through the mall, a restaurant, or church. Our next door

> > > neighbors still tense up when they see our kids, as though

their

> > > condition is contageous. I've heard that typical parents can

> hire

> > > people called " babysitters " to watch their children for an

> > evening.

> > > WOW, where could we find some of those!? Our family doesn't

> > resemble

> > > anyone in the common world.

> > >

> > > We have two eight year olds with no speech, are not potty

> trained,

> > > incapable of dressing themselves, whose only fun is to bounce

a

> > ball

> > > all day or sit in the bathtub, and who cry for hours on end.

> > Unless

> > > someone has personally lived with these issues, it is

absolutely

> > > impossible for them to understand.

> > >

> > > OK, I'm coming out of the closet. I can't relate to most

people

> > who

> > > post on autism boards either, and the education issues are a

> > perfect

> > > example. Intellectually I can understand why a parent with a

> > higher-

> > > functioning child would hate their school system because its

not

> > > providing a particular type of instruction, or didn't stop

some

> > > teasing on the playground. Emotionally, however, the

Boatrights

> > love

> > > our school because they willingly open their doors to our low-

> > > functioning children everyday. Yes, it's taken 50 years of

> parents

> > > fighting for that to occur, but thank God it has. That's why

I

> > > support the organizations which helped make that happen.

> > >

> > > All that said, here's what I know. God created all of us, and

He

> > > doesn't make mistakes (Psalm 139:13-16). God can use all of

us,

> > > including people with disabilities, for His purpose ( 9:1-

> 3).

> > > Parents dealing with severe challenges do so in order that

their

> > > faith " may proved genuine and may result in praise, glory, and

> > honor

> > > when Jesus Christ is revealed. " (1 1:6-7). Sadly, not

many

> > > reporters are going to tell that story either.

> > >

> > > Thanks for venting. I feel better, too! - Clay

> > >

> > > PS: This diatribe was approved by my wife.

> > >

> >

>