I Have a Daughter with Cerebral Palsy and I Feel Overwhelmed.

I have a sister that takes care of special need people in her home. She has been going to Love & Logic classes that have helped her with the most severe cases. They have a 800# you can call. The people my sister takes care of couldn't talk and would throw fits. The stuff she learned has help 100% Try it. It is love&logic.com good luck. MR

I am a pediatric physical therapist and have run into several families who do not have the resources presented to them upon exiting the hospital - and therefore have been feeling overwhelmed with their little ones. First of all I think you need to get a good at home seating system through your physical or occupational therapist. They should be able to put you in touch with a vendor who can trial a seating system for you. You do need to take care of yourself.

The other piece to having your little one sleep in her own crib is definitely your comfort with her ability to move on her own if she rolls over in her crib. I don't know the severity of her motor disabilities but I would be advocating for letting her cry for a few minutes at a time and repositioning her in her crib.

Please feel free to email me and I would be willing to give you some contact information for equipment and maybe talk about her needs.

Take care and try to get some rest!
A. Young, MSPT

Sounds like a big job and you're taking it seriously. I don't think 13 month old kids can really "take advantage." That's why punishment is not really appropriate for them. However, they do form habits based on how they experience every day. Some people think having baby sleep in their bed is fine for up to a few years. It just depends on your comfort level and your partner's comfort level. But if you want the habits to change, you're the only one who can help her. If the doctor sees no reason to hold her all the time, you'll need to try hard to reduce that behavior. "Mommy Guilt" is very strong and makes us overindulge our kids sometimes. But letting a child cry for a little while is not a crime. Maybe change one thing at a time, like the nap-holding. If she doesn't nap because you don't hold her, never mind. She'll sleep better that night. Just try to change your own behavior and she'll adapt after some tearful times. Maybe you can sit by her crib at naptime and sing to her so she knows you're there, but just do not pick her up. Even reading to her in a low, somewhat monotone voice might help. She'll have your company and a sound that helps her calm down. Good luck. LD

I have a son also who was diagnosed with cerebal palsy. I know and understand how you feel. The therapy was ok but as I watched them work with my son I thought to myself you know I can do this at home with him. The sleeping situation though is a tough one. Our son sleeps with us or in his bed next to ours.We tired everything for him. He slept on the floor, the couch, with his siblings. Jared in the long run still ended up in our bed no matter what. In the last maybe 4 months he has slept in his own bed. We cuddle him but we are over protective of him. No matter what you do nothing is ever wrong and you will baby your baby no matter what. Our son Jared is going to be 4 yrs old. We were devestated when the doctor told us this in 2005. Jared was developing behind schdule and it concerned us. As of today Jared walks but with a limp and he holds his right arm in towards his chest. The doctor told us that he might not be able to play sports or run. He doesn't like anyone to hold his right hand. He is very dependent on his left for everything. I have learned alot since Jared was diagnosed.

My first daughter, born many years ago, had many disabilities, so I know something about the exhaustion and frustration in trying to find answers. I also had a cousin with severe disabilities. Marriages are often destroyed (and were, in my aunt's case) because the mother neglects her husband or other children.

Now, many years later, I'm an advocate for disabled access, and I work together with many persons with disabilities, including a couple of people with very severe CP. The most successful people (and I think this also includes those without disabilities) are those who do not become too dependent on their parents. Before my daughter died, even though she was severely disabled, we worked long hours with a therapist teaching her to turn over by herself. It was worth it. Do everything possible to teach your daughter how to put herself to sleep, just as you would with a non-disabled child. Everything that she can do by herself, she should, even though it may require aids of various kinds.

Have you contacted United Cerebral Palsy? It's a great organization, and there are probably some support groups you can join, and you can certainly get some questions answered, I would think.

Good luck. You are very fortunate to have a daughter who "only" has CP and I wish both of you a long and productive life.

S. Toji (age 71)
Irvine

I don't have any answers... but I just wanted to commend you for your experience and for loving your daughter so so much. That is so precious what you are doing, and to the best of your abilities. A BIG hug to you. Really. I really feel for you and wish you the best... keep it up, you are being a great Mom to her. Just love her and do your best. You are not a "Ninny."
Perhaps join a support group of like Moms, if you can.
Take care,
~Susan
www.cafepress.com/littlegoogoo

Hi M., I have worked with the disabled community for 17yrs now, I am a supervisor of a residential home for 6 gentleman, my advice to you, is FOLLOW YOUR MOTHER INSTINCT!!! You feel you are giving in too much to your daughter, you probably are!!! Rember, your daughter may have CP, but, she is still YOUR DAUGHTER, and she needs you to be MOM, and teach her the things she NEEDS to learn to be able to live in her life!! She needs to learn from the gate, NOT TO USE HER DISABILITY, but to LEARN TO LIVE THE BEST SHE CAN, with her disability, that is THE BEST lesson you can teach her, The men who live in my home, 2 have CP, but they also have mental retardation, BUT, the needs are still the same THEY NEED TO LIVE AS NORMAL A LIFE AS POSSIBLE!! So, if your daughter was NOT disabled, would you treat this problem the same way? Think about it, and TRUST YOUR MOTHERS INTUITION!!!!

I am not sure if this will do you any good but try reading "healthy sleep habits, healthy child" It is a great book and has a section for special needs. Also, check out the website for The Sleep Lady. She has question and answer sessions for about 40 dollars and may help. Is there a local support group for you? Good luck to you, take care

How about a little of both and there is nothing wrong with it. Consult with your doctor about her sleeping habits and if the doc says she should be safe sleeping alone, then wean her from sleeping with you just as if she did not have CP. About 3 good nights of crying it out with some frequent check up visits to let her know you are there and soon she will fall asleep on her own.

Try not to feel like you are not doing enough. Therapy 4 times a week is a lot of work. It sounds like you are doing everything within your power to help her be comfortable and loved. You are doing a wonderful job!

Make sure you are taking care of yourself.

Best of luck to you.
C.

Hi

All I can offer to you is the comfort that someone has read your story and sincerely prays for you.
This too shall pass.
Though it is difficult and seems to be more than you can bear, be assured that you have what it takes to endure.
She IS a special child and NO ONE can tell you what is right or wrong.
You follow your heart and IF you make mistakes , they are your own and you know you did what was best in your own eyes. There is no condemnation in that!

Love & Prayers
S.