RE: chronic illness

[Guest guest]

> > Does anyone here have a chronic illness? And how do you cope with it

> > and rearing a child with autism?

I just recently (about 3 weeks ago) was diagnosed with hypothyroidism.

(Here all this time I thought my extreme fatigue, slow and steady weight

gain, mood swings and hair falling out was all do to the stress of raising

!!!! <grin>)

I really have not learned to cope wiht it yet. I kept pushing myself beyond

my limits until I would crash exhausted in to bed as soon as I was sure he

was asleep at night. Now that I know there is something physically wrong

with me and it is not just all in my head, I am taking more time to take

care of myself. I make sure I relax in the evenings more. I am not on the

computer as much - I tend to just read more and not respond as much as I

used to. I am making sure I take my medication. I am also considering

hiring someone to come in and deep clean my house once or twice a week. I

hate having a messy, dirty house, but most evenings I am just too tired

after work and dealing with the kids to do much. And the weekends are so

busy.

I am trying to accept my limitations and come to realize I am not

" superwoman " and I can not do it all!!! Financial situations force me to

work (my husband's job has no medical insurance - can't live without that

what with all 's medical stuff!!), or I would give that up.

Unfortunately, my husband is not a big help when it comes to helping out

with the housework ..... but, he has started doing small things like

putting to bed so I can go to bed earlier. My oldest daughter is a

huge help to me right now as she can even get dinner if I am just not

feeling up to it!

If anyone else out there knows how to deal with chronic illness and raising

a child with autism, I would like to hear about it too!!!!!

Debi

[Guest guest]

Debin N wrote:

> > > Does anyone here have a chronic illness? And how do you cope with it

> > > and rearing a child with autism?

I am a mom who has several serious health issues and am raising my almost 17 yo

son with Asperger's. It is a daily challenge to balance the needs of the two of

us and make decisions about how much we can do for whom sometimes.

We always have homeschooled and Jess, our son, sees a neurodevelopmentalist so

he is on special program activities all through the day. One of the things that

makes a lot of difference for us is that my husband is so involved in working

with Jess. If I am having a rough day, then he is willing to do more with him

before he leaves in the morning to make things a little easier for me but it is

still challenging.

I think I had begun early on to work on the things in program and school that I

thought he could take on by himself if he had a list to follow and a timer (a

lot of his program has time limits for each activity) and Dad made up a check

off list on the computer of all the things he could do. Each day he prints one

for us and Jess works off the list until I get going in the morning and then I

can work with him as much as I am able and then refer him back to the list when

I need a break (or rest when he needs one).

Some days we get it all done and then there are days when we do the best we can.

I have had to learn that it is really the best that I can do and not beat myself

up about it. What I am doing is so much more than what he would have if I were

not trying.

Of course, it has taken time but the more that the program activities begin to

help his processing ( auditory and visual and he is hypersensitive to sound,

smell, and touch ) then the better things have gotten in trying to work

together.

Because of the minerals and electrolytes he is taking his emotionality has

greatly improved and that has made life much better. He is on Chembalance.

By the way, I am a newbie and my name is . I live in Vermont and my son

Jess is the youngest of three children (the only one who is autistic). Our two

older children are married with children of their own.

I have fibromyalgia, chronic fatigue syndrome and prinz metal angina by the way

so I deal a lot with fatigue and pain in many ways. It is a daily struggle but I

have seen my son grow in the area of compassion and helpfulness and this can be

as encouraging as any other progress he has made.

Good to be here with other parents with the same goals and daily challenges.

[Guest guest]

I don't have 'chronic' illness, but I did have kidney cancer 3 years

ago....and had my kidney removed. It all came and went (literally) so

quickly that it didn't even feel like I had cancer. I didn't have to do

chemo or radiation....thank God the surgeon took it all out in surgery.

I'll celebrate 3 years April 23.....

Of course, Beth acted like she could care less (it's that little

'empathy problem' our aspies have). I know she cared..but she didn't

show it much.

But anyway....that was a challenging time. Another challenging time

didn't deal with chronic illness, but was when I was finishing my B.A.

degree in an accelerated, evening program (the one I am Marketing

Manager of now!). I did 2 hours of homework a night with Beth, who was

in 3rd grade or so then, and then I put her to bed and had to lie down

with her (sometimes for an hour!) to help her relax enough to go to

sleep...and to try to stay awake myself! And THEN I went downstairs to

the computer and did my college homework...around 11 p.m. every night.

Don't know how I did that....in retrospect.......

Maralee

In the Chicago 'burbs, where Spring is just around the corner! (I hope)

> Re: chronic illness

>

> > > Does anyone here have a chronic illness? And how do you cope with

it

> > > and rearing a child with autism?

>

> I just recently (about 3 weeks ago) was diagnosed with hypothyroidism.

> (Here all this time I thought my extreme fatigue, slow and steady

weight

> gain, mood swings and hair falling out was all do to the stress of

raising

> !!!! <grin>)

>

> I really have not learned to cope wiht it yet. I kept pushing myself

beyond

> my limits until I would crash exhausted in to bed as soon as I was

sure he

> was asleep at night. Now that I know there is something physically

wrong

> with me and it is not just all in my head, I am taking more time to

take

> care of myself. I make sure I relax in the evenings more. I am not

on the

> computer as much - I tend to just read more and not respond as much as

I

> used to. I am making sure I take my medication. I am also

considering

> hiring someone to come in and deep clean my house once or twice a

week. I

> hate having a messy, dirty house, but most evenings I am just too

tired

> after work and dealing with the kids to do much. And the weekends are

so

> busy.

>

> I am trying to accept my limitations and come to realize I am not

> " superwoman " and I can not do it all!!! Financial situations force me

to

> work (my husband's job has no medical insurance - can't live without

that

> what with all 's medical stuff!!), or I would give that up.

> Unfortunately, my husband is not a big help when it comes to helping

out

> with the housework ..... but, he has started doing small things

like

> putting to bed so I can go to bed earlier. My oldest daughter

is a

> huge help to me right now as she can even get dinner if I am just not

> feeling up to it!

>

> If anyone else out there knows how to deal with chronic illness and

raising

> a child with autism, I would like to hear about it too!!!!!

>

> Debi

>

>

>

>

>