Topic : 08/19 Tired of Being a Mom

i know exactly where the mom with the disabled child is coming from. my daughter is 22 and has cerebal palsy with physical as well as mental impairments. she will always need to be cared for. at the age of 27 i was pregnant with twins and becuase of a condition called twin to twin steal, one of my babies died at 32 weeks gestation. my daughter amy was born at 32 weeks by emergency c-ssection. not only was i not ready for twins, i was not ready to lose a child then also have a preemie as my first child. even though i was a nurse, i was not prepared for what was to be my life as a mom of a disabled child. i have been married for 27 years to a man who was sent to me  from God. i don't  know anyone else who would have stood by our family as he has.

there have been many many times over the last 22 years that i wished that my daughter had never been born. there have been many many times that i wished that i could leave and never come back. i have cried more tears than i ever thought possible. the anguish that a parent feels when you are helpless and cannot take this burden away from your child cannot be understood by anyone who has not lived it. guilt haunted me for years and i have to admit still creeps in even now.

my daughter does communicate and was able to attend school. she is in a wheelchair and is not continent consistently. taking care of her was not diffucult until after an orthopaedic procedure on her knees, she became severly depressed and required medication to break her out of it. that's when i can now say there was a turning point in not only my daughters life but mine as her mother and caretaker.

she began to gain weight because of the physcotropic meds she was on. it became more and more diffucult to care for her over the next several years. she also changed emotionally as did i. i became less and less tolerant and my moods caused her to also become angry and intolerent of us as caregivers.

to shroten my story, it became more and more diffucult to care for her physically, and it became even more diffucult to care for her emotionally. i can say that the atmosphere in our home was becoming unhealthy.

after a long time of searching our hearts, we decided to look for care for our daughter outside our home. now you have to understand as only a parent of a disabled child can, that we had decided that we would always care for our daughter as long as we were able. we believe that God had given her to us and we could not see any other option but to care for her. but when the situation became worse and more unhealthy for all of us, we knew we had to find her a place where she could be happy.

it had gotten so bad that i could no longer be home with her for longer than a few hours during the day because i could not lift her.

in june of this year 2008, we found a group home for our daughter that is only 13miles f rom our house. it is the hardest thing i have ever had to do in my life. i was scared, guilty, you name it. but i knew it would be best for her. but that did not make it easy.

it has only been a few months, but now when we see her, we visit as her parents, and not as her caregivers. the anxiety is easing slowly.

don't refuse help or think that if you place your child in an institution that you have failed.

God has promised us that He would never give us more than we could bear, and if we could not bear it, He would provide a way. I know that He has provided a way for my daughter to grow and become a more independent person seperate from us. i pray every night for Him to keep her. she is His more than she is mine, and i trust Him completely to watch over her. we have not given up our power of attorney or medical directives for her care, but now we can be her parents again and laugh and visit when we see her.

find the help you need for your child. but my best advice to you is to pray to God unceasingly. He is the answer to all your needs. He will provide for you and your family.

i would not have chosen this life for myself or my daughter, but God provided a way for me to become closer to Him.

thank you for your time to read my story

People adopt children for many reasons...not all are the right ones.  Did you hear her say something to the effect of you have to give a child like that a place to live?  I don't think she's as much cold, as a person who wants to be seen as the local "saint"...and expects gratitude from these children...one was her sunshine...this one, well, she wants to send her back...no gratitude, farewell to you. 

She admitted that bonding with her was not possible.  Well, she was told about the disabilities, one being the child having the bonding problem...she wants to "fix" people, not accept them. 

I have friends who have adopted children with disabilities...two are totally committed, one did it to be seen as a goody two shoes. 

This was not an unplanned pregnancy, nor was it an infant adoption where there were no signs of disability...maybe she does this to please her husband.  I just got a bad vibe, like her heart wan't really in this, and the challange was something she did not  fully consider. 

We had such stringent screening on adoptive parents, but in the Ukraine, it may be less.  Seriously, what did she expect?  I heard her blaming the child for emotions that she didn't have...blamed that child for everything...

I think the little girl is reacting to her mother's  inability to love her.  The adoption, in my opinion was a mistake, and this child may be better off in another home.  Wonder where was CPS after the suicide attempt...no intervention?  That's really remiss.

This story sadly  takes me back to a few months ago. My daughter has 2 beautiful girls age 7 and 9. My daughter got pregnant and they monitored her closely  for the possibility  of having a Downes Syndrome child, the tests they did led up to the fact the baby indeed had Down Syndrome, she had further tests done that showed up with a lot of red flags about the severity the child may have, she had a large head and other problems , they told her that she would be very disabled and more. They told her she could abort because of the time frame they have to legally do it. We all were very distraught over this and she made the decision to abort for the only reason that she didn't want to see the child suffer with medical problems that would not be to pleasant for the baby. Don't get us wrong we do not believe in abortion which is why she had much difficulty in making that desicion. So our thoughts are did she make the right decision . the way I feel is if you know before hand that the child would be sick and sometimes go thru medical treatment that would make the child suffer  and have to go thru difficulties for entire life and there was no cure , wouldn't the baby be better off not to be born and end it before hand. My daughter still deals with the guilt every day, plus the fact that she does have two other younger children to raise and care for. My daughter is a Christian  and has horrible guilt over this matter We all hope the decision she made was for the best. why should a mother and child suffer the way this mother did on todays show, and not be able to raise the girls the way they should be raised, my daughter is a very loving mother and gets very upset when one of them are sick or in pain.

I've worked with special needs adults, children & teens. The main thing they need is clear, strong guidance in a peaceful setting. It would be ideal to have an advocate/special needs worker from the time the child is first diagnosed but when that does't happen, the parents have to get help from the community/schools. I worked with a boy who had severe Autism. He was 6 years old & still in diapers. His father told me "He aint' never gonna learn nothin'"  His mother was in tears. 

I asked the special needs teacher if I (an aide) could take this boy to a quiet room every day. She agreed b/c his behavior was distracting the other children, who were not as severely Autistic (etc.). So this boy & I spent the first 20 min. of each school day in a quiet room with little light. The flourescent lights off, just a little light from the blinds.  I would sit without saying a word while he ran around, yelling & flapping his arms.

After his 20 min. of flapping his arms, screaming, flopping on the floor, I would take one stuffed animal & say what it was "Zebra, Zebra" I'd look at him and say his name, then the animal's name. After 2 weeks, I could point to the toy box & say "Zebra" and the boy would go & get the Zebra.  This also worked with the AB Cs.  I used the cut-out wooden 3D ABCs, pick one up and say "A" & later, "Show me the A"  He was able to focus & do it. 

In the bathroom, I'd show him how to pull down his own "Pull Up" diapers.  I'd say very few words like "pants down. pull up down. sit on toilet. Good!" (frequent praise)  Too much noise, too many words really confuses & upsets people with Autism.  After 6 weeks, he was urinating by himself, like any 6 year old boy.  HIs parents were in shock  I realize that this method took incredible patience & repetition. 

It was only possible b/c the school system where I live (in Colorado--not a wealthy town) had a summer school program for special needs children.  The teacher was amazing & brilliant (as was the teacher in the high school where I worked during the regular school year).  I think the government should suport these kinds of programs all over the USA.  Each & every parent of a special child (whether Down, Autism, Bipolar, Schitzophrenic, physically disadvantaged) should get counseling & education on how to work with their child.  There should be programs where parents can take their children for at least 2 hours/day. 

The parents need a break from the kids & the kids need a break from the parents.  It's such a lit fuse situation, all the screaming & kicking etc. but I can tell you that because I didn't have to go home to that, I had the patience to work with that severely disturbed little boy for 4 hours, 5 days a week for an entire summer.  He left that program out of diapers, able to point to each letter of the alphabet, show us each animal (Zebra, Giraffe, Elephant & etc.).  He could point, in a book, every color, shape & numbers 1-10.  I only wish his parents could have participated in this program but that wasn't an option.  His mother was very kind but felt no hope until the end of the summer.  His father simply did not believe he could learn anything.  He was overjoyed---but this type of learning & care has to be Ongoing. 

There are some good institutions for severely disturbed children/adults but there are also terribly understaffed ones.  Go to social services & ask for help.  If you are a church member, ask your pastor/priest where programs are, drop-in services, etc.  There is help & you can have hope even for the most severely Autistic/Down children.