Personal Experience of Parenting Disabled Kids

TEN POINTS ON RAISING CHILDREN WITH DISABILITIES

You’re scared of your child’s future.

On July 2nd, 1985, I would always remember that day. I left for work my daughter six months old and doing things that six month old babies do. She was sitting up by herself. She was crawling and meeting her goals. While I was at work I received a dreadful call. The person told me that my baby was in a accident and at the hospital. I immediately left work and didn’t know what to expect. My heart was beating fast and when I got to see her I immediately broke down. I was so hurt and angry that my child had been hurt. Later on the Doctor broke the news to me. He told me my child would never be able to walk and would be in the wheel chair for the rest of her life. He said her spinal cord was severed and couldn’t be repaired through surgery. I left for work with a healthy baby and came back and saw that she couldn’t sit up by herself and she wasn’t moving her legs. That hurt me so bad and I cried and cried. I didn’t know how I was going to take care of her but I knew I loved her and I would do whatever it takes to help her survive in this world. I knew God gave her to me and she had a purpose in this world. Later on years later I was pregnant with another child. The Doctor noticed on my ultrasound that there was something wrong with my baby. This time I was more prepared because the Doctor told me while I was pregnant with her. But I was still shocked and sad it was happening again. They told me she will be severely developmentally disabled and did I want to abort her. Of course I said no. This child could not do anything for herself. She couldn’t walk. She couldn’t talk but she could communicate to you with her voice. I was sad but I knew God wouldn’t put too much on you than you can bear. I felt like God gave this child to me for a reason and she too has a purpose. I would love her and accept her and take care of her. I was her eyes ears hands legs everything. She required a great deal of care, so I was her nurse. I had to learn a lot of things to take care of her. I didn’t mind though because she was a very happy joyous child that would burst out in laughter all the time. She was very funny and always made me laugh. I didn’t look at her as a burden because she was so strong in her sickness. When she got sick she would bounce back every time. She lived to see 17 years old. The Doctors said that because of my love she lived longer than they expected her to live. Most kids like her don’t live that long. She outlived a lot of children that had the same thing she had.

Advice: First you’re shocked when you hear that your child is disabled. You’re afraid because you don’t know what the future holds for your child so you have to let it soak in. You find out what their limitations will be and you do your best to see that they reach and go as far as they can go according to their limitations.

Also remember that it’s not your fault

A lot of times parents feel guilty like they did something wrong for their child to end up disabled. I felt like it was my fault because of the car accident because I was working at the time. I felt like if I wasn’t working and would not had left her with this other person that caused her to be in the accident that this would have never happened to her. When I got pregnant with my other daughter and she was born with a severe disability I started wondering what was wrong with me. Why do I have two children with disabilities. Was I being punished for something. Did I do something wrong to catch the cold in my womb that caused my daughter to get CMV. As parents we often blame ourselves when our children are disabled. We think it’s our fault and sometimes people even get angry with God. I asked God why. What I know is that life happens.

Advice: Different people take different paths in life. Life is not fair. I know there is a God and he won’t put too much on you than you can bear. I know he loves you and your special children that he gave you and it doesn’t do you or your children any good to walk around feeling guilty. Just give it to God. We don’t understand why some things happen but God knows why.

Accept your Child as he/she is

Once I got the diagnosis on both of my children I was at first shocked. But then I realized I had to accept reality. I had to face that. But realize the way they walk is with a wheelchair, or walker, or braces. I played with my children in the wheelchair. I danced with them and had them dancing to music. I played games with them. I took them to the store. To the mall.

Advice:You accept your child for who they are and face reality. You have to face that your child might not be able to run or walk like other children. But you can play with your children too in your own little way no matter what their diagnosis is. Special needs children can bring you a lot of joy. I’m not saying its not hard work taking care of them sometimes. Yes sometimes you have to do more than other parents but that’s your reality. Yes. Sometimes you get tired and weary. It’s not easy all of the time. What you do is pray and ask God to give you the strength to take care of them. It is not easy going to doctors all of the time. It is not easy seeing physical therapist and speech therapist and occupational therapist every week. But that was my reality and you have to face it and hit it head on.

Faith will brighten your child’s future

I hugged them and showed them love. I was there for them all of the time. I took my kids to church. I let them get prayer by a pastor. I had hope that they would do good in life. When I took my children to church he taught that everybody has a purpose in life and that God loves everyone. That gave me and my child faith and hope and my daughter believed that she had a purpose in life too. There is a reason why she was born. That is how I laid the foundation for my kids by giving them faith and hope.

Advice: You love your child with all your might and have faith that they will be alright. You have to have faith that your child will be alright. Faith is hope. Faith is the substance of things hope for and the evidence of things not seen. Everybody has something wrong with them. Its just that you can see people that are disabled better. Remember God gave you that child and he doesn’t make mistakes. There are all kinds of people in this world. All of us are God's children. Special needs children are special in God's eye. I believe that. And if he gave them to you that means that you are a special parent that can handle taking care of a special child. Mention parents love and hope plays a critical role in their child success in life.

Work with your Child’s Doctors, Physical Therapist, and other professionals

I took my children to their Doctors appointments. I took them to physical therapy. With physical therapy they work on their legs. I learned how to do the exercises myself to do the therapy on them at home. The occupational therapy work with their hands. The speech therapy work on their speech. I learned what they were doing and I did it at home. Sometimes Doctor's will tell you that your child needs to wear back braces or leg braces or hand splints. Whatever the Doctor said my children needed I made sure that they had it. If it was a certain kind of medicine I made sure that they got it. I listened to the Doctor and asked questions if I didn't understand.

Advice:

It is a lot to take in with special needs children, but if you don't understand the Doctor, or Therapist ask questions. Learn as much as possible about your child's condition. You need to know. You are their parent. Learn how to do the therapy at home. I had to do a lot of things a nurse do. I had to learn how to use a catheter. My younger daughter couldn't eat by mouth so I had to feed her through a j tube in her stomach. I had to be mom and nurse. You have to do what you have to do to keep your child going.

Be your child’s advocate

When the Doctors told me that one of my children that I had wouldn’t live long I didn’t just give up on her. She was blessed to make it to 17 years old. I kept on taking care of her. I kept taking her to church. I kept taking her out. I fought for her. A physical therapist told me that my other daughter had a closed head injury. I didn’t accept that. I knew my daughter was smart. She didn’t accept that either. She worked herself out of special Ed and later graduated from Oakland University with a Bachelors Degree. Later she went on to become Miss Wheelchair. She is married now with two children. I raised a successful daughter.

Advice: Fight for them. Everything the professionals say does not have to be true. Have faith in God. Help your child be the best they can be with their disability. You don’t have to accept everything a professional says. Sometime they can be wrong. You know your child better than the Doctors or professionals. You are their parent. You can voice your opinion also. 22

People will stare and make judgments

Some people asked how did my child end up in a wheelchair. I told them she was in a car accident. I once had a Doctor say by all means please use a car seat. My daughter was in a car seat when she got hurt and I wasn't there. I was at work. When I left her that morning she was in a car seat. That’s what I mean when I say people might judge us as parents. I didn’t like the stares. But so what. That didn’t stop me from taking my children in public. I ignored them and didn’t pay attention to them. Like I said before. Everybody has something wrong with them. Some people you can see theirs better. I held my head up high and pushed them on through the mall or to church or whatever. Some people ask questions. I didn’t mind answering the questions.

Advice: Realize that when you go out in public with your child, especially if they’re in the wheel chair or braces or look or act different. You will get stares. I didn’t like the stares. But so what. That didn’t stop me from taking my children in public. I ignored them and didn’t pay attention to them. Like I said before.

Never be ashamed of your disabled child

Is there any stories about you not being ashamed?

Do not lock them in the house and say I’m trying to protect them from the world or trying to keep them from being hurt. I was never ashamed because those were my children and I didn’t have any reason to feel ashamed. They are people too. There are all kinds of people in this world. Everyone is different in their own way. You should not feel ashamed or embarrassed. Special needs children are special and you are a special parent. You should hold your head up high and be strong. If you are ashamed you shouldn’t be. That is the child that God gave you and you should be proud of your child and realize everybody has something wrong with them.

Advice: If your child feels bullied or get stares at school go to the school and talk to the teacher. Tell your child that they are just as good as other kids. Those kids are no better than they are in Gods eyes and in your eyes. Children can feel off your vibe, so if you’re ashamed, they may become ashamed of themselves too.

Treat your child as normal as possible and Never put limitations on your child

As Tameka and Deanna grow up I treated them as normal as possible by taking them everywhere. I threw birthday parties for both of my children. And the neighborhood kids came to those parties especially for my oldest one. I went to my younger childs school and had a birthday party in her classroom with her classmates and she enjoyed that. Have fun with your children. My children went to Cedar Pointe, Six Flags, Kings Island, Sea World. I just didn’t push them in their wheel chairs through the park either. We put them on the rides and they had fun just like other children. I didn’t tell my oldest daughter you can’t drive because she had good upper body strength. She learned how to drive with hand controls. I didn’t tell her don’t go to a university that might be too hard for you. I didn’t tell her you can’t have kids or get married ever. I treated her just like a normal young lady and didn’t put limitations on her and she has done good because of that. Don’t always say what they can’t do say what they can do. You should conscetrate on what your child can do and work with that. And what they can’t do work on that so that they can do it.

Advice: Do not talk negative to them. Always speak positive words over them and to them. Whether they can understand you or not. You treat them normal by taking them out in public. Taking them to the store, to the mall, to the circus, to sesame street. Take them in their wheelchairs or braces or whatever. If you put limitations on your child they will never become independent. If something should happen to you they won’t be able to function on their own. You want them to be independent when they grow up and be able to function in this world when you leave. Of course it depends on the childs’ disability, but you want to make that child as independent as possible. I’ve seen other parents say oh he can’t drive a car when all he needs is hand controls and he could drive. I’ve seen other parents keep their kids locked up in the house because they didn’t want them to get hurt. Don’t be too overprotective over your child or they will be very limited when they grow up.

Love that child with all that is within you

Love is patient, love is kind, Love suffers long and is kind; bears all things, believes all things, hopes all things, endures all things. I tried to live this scripture every day God would not have given you that special child to take care of if he didn’t think you could not handle it. Special children are also a gift from God. They have so much love to give.

Advice:Take them to the mall, out to eat at restaurants, to the zoo, to the circus. To church. To as many places as you can take them. Don’t lock them in the house and don’t pay attention to the stares of people. Don’t put your child in a box and don’t let anybody else put them in a box. Sometimes some Doctors or ignorant people will say things that might hurt your feelings, but always let your child know that you love them and they are a gift from God.