Can I make one small whine...

[Judy from Boise]

vent away ! A warm bath and reading in bed sounds well deserved.
Remember to say a nice heartfelt "I appreciate you" when the nurse returns ,

 

[klacey1]

First,
Secondly, don't beat yourself up over thinking about the future. Before becoming a parent, you think that after your children are grown, you'll have "you" time again. With an autistic child, that's a bit of a gray zone...
DBF works with the mentally/physically disabled here in NY. They have some wonderful "day hab" and full care programs, where such people live attended 24/7 by nurses and professionals in a sort of apartment complex. It's a terrific program.
In the afternoons, DBF works in what they call the "afterschool program" (which is misleading because none of the kids who attend go to school. It's free of charge (it's government subsidised) and parents can drop off their kids (any age-- usual age in late teens-40ish) every afternoon Mon-Friday from 3-8 and DBF and the staff do things with them. It's a great program-- great for the kids and great for the parents who DEFINITELY deserve a break. Maybe you could look into similar programs in GA?
Take a bath and a book-- you need some "me" time!

 

[disneymarie]

Without everyone thinking I'm a terrible person? It's about Christian...

I hate walking with Christian. There! I said it.

Chrisitian is my 14yo very mentally handicapped son. He's a full care kinda kid. He's taller than me and stronger than me. He's kinda off-balance and waddles back and forth when we walk. He pushes and pulls me the whole way and when we're done I feel like I've been beaten up.

We usually have a nurse who comes in to help in the evenings, but he was sick tonight. Christian is in the routine of eating dinner and going for a 2 mile walk with the nurse. DH is out of town, DD16 was at dance for 2 hours. Christian was being a pest and getting into things, so I took him for a walk myself. He loved it--there are a lot of Christmas lights in our neighborhood. BUt now my back and neck are killing me from him jerking me around for 45 minutes. I may have to call my massage therapist in the morning. Thank goodness DH is coming home tomorrow or Wednesday.

You know, I don't like to think about Christian's future too much but tonight I find myself considering just how long are we going to be able to do this.

My family started giving me grief this fall over walking with me. I am only 55 but have degenerative disk, sacroiliac problems and the right hip is shot....
I have a rollator that I can sit on too. I got it inexpensive at SAM's club, and they have them online at Amazon, more$$$ though. I can walk and steady the weight, and sit to rest...

Last time I wanted to shop the dh made noise and said your not dragging that, are you.

Well, this weekend we went to see a Santa trolley ride, the train museum, and drove to see holiday lights. That was Saturday. I was dying in pain, with the TENS unit on, heating pad, took the meds, took my pain pills two days and I still can not get in and out of the car, I can't get my shoes on. tears are there trying to sort laundry tonight.

All because I would be a pain with the walker. Now, I can not get on top of the spasms and pain,

BUT wow is it freedom for me to walk with out pain, support, I can sit and enjoy so many activities if I did not have it.
Check one out, your son will have stability, can get around, and it will not be a strain on your body,

Gee Mom, you and Christian could get matching, or different colors, race even..Hugs to you....
$87.00

 

[terri01p]

My dd is 27 years old, there has not been many days that go by that I haven't push and pulled her wheelchair, I receive no help with her care, she can not dress herself, bathe herself, can not walk at all and need much care....I know how you feel, but if she wasn't here my life would be crushed!

 

[MariDisney]

You did a good thing, mom. Hope you are getting some much needed rest and can greet tomorrow with a fresh perspective. Hugs to you!

 

[disykat]

That sounds exhausting! You are a hero in my book.

 

[disneymarie]

My dd is 27 years old, there has not been many days that go by that I haven't push and pulled her wheelchair, I receive no help with her care, she can not dress herself, bathe herself, can not walk at all and need much care....I know how you feel, but if she wasn't here my life would be crushed!

I feel the heart aching, chest crushing ache. I lost my dd 2 Christmas's ago, suddenly at age 29.
She had a severe nerve injury to the cervical spine at age 16. All her life although she was ambulatory, she only knew pain. She was filled with spasms from the neck, arms, hands, back, down her legs.

Ultimately one of the medications prescribed was with issues in time disbursement. Instead of over 3 days the entire amount went into my daughter transdermally. I found her gone when I came home from work. I KNEW something was wrong. She would call me leave messages at work, and I talked to her from work during the shift.

I never knew the medication held that potent an opioid. They keep recalling, but do not change to the alternate method of Matrix dots instead of a gel well.
For all her pain is gone, but with it so is my spirit, at any moment I just well up and cry in a memory. I wish she were here, selfish as it may seem she had a life, she was my child I bore.

The holidays are the worst. Grab that child and love them with kisses and hugs. I can only see my dd now in my dreams. I so want to hold her.

My family did not help with her care, not like the daily care I did, All the medical needs, the bathing, appointments, They would think because they did not see broken arms and body that it was not so bad. I don't think they even miss her......that kills me.

To make it so much worse, this spring we lost her half brother in a car accident... It just does not even seem like holiday's. We have the small ones,my younger dd 14, grandson 4, and Brad's son is 2 yrs old. I just put up a small tree because the 14 yr old asked. It is prelite, I don't feel up to bulbs. I don't want to see the Angels I took off the tree the week we buried her.....

Somehow your families need to know how to care and help, pitch in and make life for everyone so much easier.
They have to think for one moment what it would be like not to have your special person, and have another special ounce of compassion for each of you...

I bless you all.
Di

 

[golfgal]

I bet there are a lot of strong high school boys that might be good back ups for you. I know in our area the high school kids all have to do community service for school as well as most of them have to do something for church as well. My DS17 babysits a lot for our neighbor's son who is autistic. Helping Christian would be something he would be very happy to do for his community service hours. I bet if you asked around at church or the schools you could find a couple kids to help out when your nurse is sick. If you don't ask, people don't know you need help

 

[wilma-bride]

You have my utmost admiration. I could not do what you do and cannot begin to understand how difficult things must be for you at times. I hope you managed to get a good night's sleep and are not too achy today

Don't feel bad for the feelings you have - all parents have negative feelings towards/about their children at times, that is normal

 

[Robinrs]

God bless you... you love your child, just hate the walk.

I hated changing my Dad's diapers,

I hated giving my Mom her baths,

I hated cleaning my son's cut foot every night....

But I LOOOOOOOOOOOOOOOOVED them... and always will.

You are a blessing to him, as he is to you. Hang in there.


on another note, I lost my son whose middle name was Christian 24 years ago. The doctor told me he would be extremely handicapped if he had lived. I told him I would've preferred that to burying him....

You ARE blessed.

 

[Heidict]

You love him and are a wonderful mother to him, it's natural and normal to get frustrated at times.

My sister had MS and the last year and a half of her life she was non ambulatory. My mother ran herself ragged taking care of her. Cleaning her, changing diapers and clothes, using that stupid hoyer lift, pushing the wheelchair every where, she was exhausted and it really wore her down. But she would do it all over again because that was her daughter and she loved her. I'm sure it's the same with you and your son. Nothing will ever change that love you have for him.

 

[minkydog]

My dd is 27 years old, there has not been many days that go by that I haven't push and pulled her wheelchair, I receive no help with her care, she can not dress herself, bathe herself, can not walk at all and need much care....I know how you feel, but if she wasn't here my life would be crushed!

I know exactly what you mean. Christian has no self-help skills, he can't talk, wears diapers. But he is a pleasant happy (man-size) boy who gives us hugs, just learned to kiss a few months ago, and often hums "I love you" (think of your tone of voice when you say it.)

I feel the heart aching, chest crushing ache. I lost my dd 2 Christmas's ago, suddenly at age 29.
.
For all her pain is gone, but with it so is my spirit, at any moment I just well up and cry in a memory. I wish she were here, selfish as it may seem she had a life, she was my child I bore.

Somehow your families need to know how to care and help, pitch in and make life for everyone so much easier.
They have to think for one moment what it would be like not to have your special person, and have another special ounce of compassion for each of you...

I bless you all.
Di

I'm so sorry you lost your daughter. Nothing could be worse. I lost a baby at Christmas--I know it's not the same but never a Christmas goes by that I don't think about her and wonder what might have been. My Christmases have never been quite the same.

We live about 400 miles from the nearest family. I'd like to think they would help with Christian, but I know they would not, even if we lived next door. They're all intimidated. They love him, but they don't *enjoy* him, if you know what I mean. They send him Christmas presents and birthday cards, but they would never just come up here and take care of him for a weekend(or even 4 hours.)

NOt long ago my BIL confronted my DH.MIL lives in a nursing home near them. He said it wasn't fair that SIL has to take care of their elderly mother all by herself and we needed to sell our house and get our butts to Florida and do our share! (I'm so glad I didn't hear that conversation!) DH was cool, though. He said, Okay, we could do that. Let's negotiate--we take a week with Mom and THEY take a week with Christian. I"m thinking we'd get the better end of that deal. You never saw someone back-pedal so fast in your life. They emphatically DO NOT want anything to do with Christian(idiots!)

I bet there are a lot of strong high school boys that might be good back ups for you. I know in our area the high school kids all have to do community service for school as well as most of them have to do something for church as well. My DS17 babysits a lot for our neighbor's son who is autistic. Helping Christian would be something he would be very happy to do for his community service hours. I bet if you asked around at church or the schools you could find a couple kids to help out when your nurse is sick. If you don't ask, people don't know you need help

That's a good idea. We haven't had much luck with teens so far. I think they are very put off by the diapering(it is a little weird, with him being a nearly full-grown man, if you get my drift. I do have a 15yo girl who will pinch hit for me for an hour if I need her and she can get him off the bus in an emergency. But I don't ask her to diaper him. My DD16 is a wonderful babysitter, but she has her own obligations. I try not to use her too much since she already gives so much on a daily basis.

God bless you... you love your child, just hate the walk.

I hated changing my Dad's diapers,

I hated giving my Mom her baths,

I hated cleaning my son's cut foot every night....

But I LOOOOOOOOOOOOOOOOVED them... and always will.

You are a blessing to him, as he is to you. Hang in there.


on another note, I lost my son whose middle name was Christian 24 years ago. The doctor told me he would be extremely handicapped if he had lived. I told him I would've preferred that to burying him....

You ARE blessed.

\

I know just what you mean. I don't resent Christian, I just don't like certain parts of his care. Diapering and walking, mainly. We didn't know he would be handicapped before he was born. I was offered an amniocentesis, but we decided that God was sufficient no matter what. And He has been. But sometimes I am not. I try not to let myself feel guilty because I know I'm doing all that I can. And truthfully? If we were living in the before the 1960s we probably would have had to place him by now. I'm grateful to have Christian in our lives. He's such a joy. But he's also a handful.

 

[nutterbutter2010]

Put that boy to bed and take a HOT bath. That may help your muscles.

 

[englishteacha]

Here's a hug!

 

[Nancyg56]

My family started giving me grief this fall over walking with me. I am only 55 but have degenerative disk, sacroiliac problems and the right hip is shot...

I feel the heart aching, chest crushing ache. I lost my dd 2 Christmas's ago, suddenly at age 29.

My family did not help with her care, not like the daily care I did, All the medical needs, the bathing, appointments, They would think because they did not see broken arms and body that it was not so bad. I don't think they even miss her......that kills me.

To make it so much worse, this spring we lost her half brother in a car accident...
/quote]

I don't even have the word to express how sorry I am

NOt long ago my BIL confronted my DH.MIL lives in a nursing home near them. He said it wasn't fair that SIL has to take care of their elderly mother all by herself and we needed to sell our house and get our butts to Florida and do our share! (I'm so glad I didn't hear that conversation!) DH was cool, though. He said, Okay, we could do that. Let's negotiate--we take a week with Mom and THEY take a week with Christian. I"m thinking we'd get the better end of that deal. You never saw someone back-pedal so fast in your life. They emphatically DO NOT want anything to do with Christian(idiots!)



I know just what you mean. I don't resent Christian, I just don't like certain parts of his care. Diapering and walking, mainly. We didn't know he would be handicapped before he was born. I was offered an amniocentesis, but we decided that God was sufficient no matter what. And He has been. But sometimes I am not. I try not to let myself feel guilty because I know I'm doing all that I can. And truthfully? If we were living in the before the 1960s we probably would have had to place him by now. I'm grateful to have Christian in our lives. He's such a joy. But he's also a handful.

I cannot imagine not wanting to be a part of your son's life but I know that there are people who just cannot get past any disability that makes another "different". No wonder you are exhausted , you have your hands full.

Can you call your town social services to see what is offered in your area? When my Mom was ill the aide who helped with her personal care told me that she went every day to help bathe a 14 YO girl. She told me that that 2 hours a day was the only time her Mom had some time to herself and that she would not even miss Christmas Day, helping that family was that important to her. You need a little help too, no matter how unconditional your love is you are still need to know that for a few hours Christian is in good hands and that you and your DH can do something just for the two of you or that you and your Dd can go out and not worry.

 

[yoopermom]

God Bless You, and lots of

Last year I taught LD, and had a senior student whose brother had difficulties similar to your son's. I was moved to tears constantly by the kindnesses he showed his brother, despite his own frustrations with school and life in general.

I will echo the others when I say please consider checking into community service provided by teens, its' good for ALL parties involved.

Terri

 

[clovergirl5]

You are a great mom to your ds and even if he can't tell you, I would bet he feels it. Nothing compares to having the love of a child. Even when we are tired. Hats off to you for what you do for your son.