Raising Kids With Disabilities

When asked if they want a boy or a girl, I have heard expecting couples remark, “As long as it’s healthy.” No one wishes for a child that is less than perfect. In some sense they are all less than perfect. In our case we had identical twins with Down Syndrome twenty four years ago.

After walking around like zombies for two weeks, my wife and I found strength in God and rose to tackle the task of living and raising Joey and Matt. We had no manual on what to do or how to do it. One of the first things we did is join with a nurse in the area and start a support group for parents of children with disabilities. From there we attended conferences for families who were dealing with disabilities and even got involved in being volunteer lobbyists to our state legislature. All of these things helped our emotional well being but also put us in touch with cutting edge information on disability issues.

Talking to older parents of Down Syndrome children did not help much. Most were old school. Keep them clean and healthy and then put them in front of a TV. We wanted more than that for Joey and Matt. We shot high in our goals for them. The medical community and the education system kept telling us that we needed to shoot lower and be content with what we got. We ignored most of it and plunged onward.

Fast forward twenty four years. Joey and Matt have achieved a lot. They have worked in restaurants doing food prep until a recent lay off. The restaraunt they were working at laid off 20 people prior to selling. They are actively looking again at this time. They take Tae Kwon Do and take it seriously. It is based on mimicking the actions of the teacher and repetition, which they’re good at. They are active in church activities and a have friends and now have steady girl friends. They tried to get their driver’s licenses, but with a grade school reading level, they couldn’t pass the test. They know all the road signs and tell me how to drive. They have an awareness of their disability and are not afraid to take on new challenges.

I wanted to give new parents of disabled children a few short guidelines for your challenge that lies ahead:

1. Get yourself as emotionally healthy as possible. The support group was helpful and the help of grandparents and extended family was invaluable. Have quality time with your kids, but take time to go on a date without the kids. We went on a cruise for three days to the Bahamas. Joey and Matt “punished” us for a week which is a normal baby behavior. They ignored us after we got back, but those three days were like medicine.

2. Treat your child like a normal child. I’m not saying to deny reality, just don’t accept it as the finality. Take them to T ball, dance classes, karate, soccer, and scouting. We did, and they learned to model normal kids’ behaviors and socialize. The other people’s normal kids learned sensitivity at an early age.

3. Get all of the professional help you can as early as you can. Joey and Matt started getting early education from the public school system at 3 months old. About the same time they started physical, occupational, and speech therapy funded by state programs. Don’t make the mistake of thinking that this level of help is only for the rich. We weren’t rich and our kids got top drawer care their entire lives.

4. Keep them in the educational mainstream. I would add the footnote, “when practical and in their best interest.” Teachers and school administrators urged us to put them in an all-handicapped setting. During gradeschool, they spent some time in mainstream classes and some time in the special education classes.   This will vary according to the severity of your child’s handicaps and their need for specialized instruction.  In high school, they went to a special education class for academics and were mainstreamed for physical education. During this time they were water boys for the football team but joined the team in their junior and senior years. They participated in the practices and got to play in their last game.

5. Set realistic long term goals. Aim high, but don’t deny reality. As your child enters their high school years, both their abilities and limitations will start to paint a picture of their vocational abilities. Educational choices need to be made with some vocational goals in mind. You have to begin to get a feel for what they will do with their life once the school years are behind them. Educators are sometimes reluctant to allow parents access to the inner workings of the educational world. My wife was a constant presence in our school system, volunteering for committees, helping to write a grant, and pushing the envelope on multiple occasions. Some of the changes she pushed for and got are still helping the special education students today.

6. Be your child’s best advocate. The handicapped individuals don’t have the skills to go to bat for themselves, they need our help. Don’t curse the darkness, light a candle…..and if that doesn’t work, build a bonfire. Don’t be afraid to make people in the system uncomfortable. Your child has one chance to be all they can be.

7. Don’t let your child’s disability become the center of your life. This is the toughest point to follow. We reached a breaking point when our kids were in junior high school, when we realized that our entire lifestyle was centered around handicapped issues. Our daughter was about 10 and most people didn’t even know we had a daughter. We made a conscious decision as a couple to not let handicapped issues dominate all our time and energy for the rest of our lives. We dropped out of support groups, lobbying, and conferences, and focused our advocacy efforts on the local school system.

Siblings of disabled children are often neglected on some level, because of the intense struggle that parents of the disabled go through. Don’t deny love and attention to your other children in the midst of your crusade to help your disabled child.

If you are the parent of a disabled child, let me encourage you. You can make it with God’s help. Don’t become bitter against God. I don’t understand everything (especially about God) and trying to wastes precious time and energy. Ask for God’s help and get plugged into a bible based church that believes that God answers prayer. We made it through the storm with 2 kids with disabilities, you can make it with one. Please feel free to contact us for advice.

I am writing a book on this theme. If you would like to buy a copy when it comes out, email me at JLBURKE57@HOTMAIL.COM and you’ll go on a list to be notified by email when it is available. With God’s help, you can do this.