“How do you cope with all this?” friends asked every time we got together with our children. “I couldn’t do what you’re doing.”
My friends were referring to Matthew, our first child. After suffering oxygen loss at birth in 1970, he sustained severe brain damage. According to the head pediatrician at Sick Kids Hospital, he’d never progress beyond the newborn stage and he’d never know us. We were advised to institutionalize him and have another child as soon as possible.
But six weeks later, Matthew could hold his head up and took his milk from a bottle. He stopped crying and looked up when I called to him – in the 70’s babies always slept on their tummies.
We brought Matthew home when he was two months old. For my husband and me, there was no other choice. We wanted to help him become the best person be could be.
In those days, support for families and children with developmental disabilities was almost non-existent. Doctors, even well-meaning ones, had little to recommend. Community living associations, which started to spring up in the 1950’s, were our only refuge. Parents gathered to discuss mutual concerns, exchange ideas and offer advice to one another.
People who wondered how I got through the day coping with Matthew’s special needs, made me determined to find the proper help for him. Their pronouncements of my bravery and sacrifice forced me to answer, “You’d do the same thing for your child too.”
Matthew attended integrated schools until he was twenty-one and as an adult, owned a paper route, his only paying job. He volunteered at the local library, YMCA and Wal Mart. He enjoyed activities in the community and took several trips to Florida with family and friends. He enjoyed the company of people who loved him and valued him. He was a happy individual with good self-esteem.
Matthew died in July 2010. In his forty years, he and I learned about each other. He put up with me while I searched for the best ways to help him. And because he never spoke, I learned to be observant. I made notes detailing what worked and what didn’t. The following is a list of the things most relevant to our process.
Do what makes sense. Don’t be dissuaded from what you already know. Even though you may not be a doctor or teacher, you know your own child better than anyone. Your knowledge comes from interaction and observation.
Ask for other opinions and don’t be afraid to disagree. When Matthew got to his feet at age seven, he walked on his toes. A specialist recommended cutting the tendons at the back of his heels. We took him to a therapist who suggested manipulating his feet in an up and down motion to loosen the tendons. Within six months, he was walking properly.
Refuse to take no for an answer. Your instincts about your child’s capabilities are probably correct. If you feel strongly about something, exhaust all possibilities to find satisfying answers.
Be realistic about what is possible. There’s a difference between striving for goals and realizing what is realistic and gratifying for your child. It isn’t giving up if after employing speech therapists and audiologists in an effort to teach your child to speak, you try a less universal solution such as teaching him hand signs and/or how to use a Bliss Symbolics Board. Effective communication is the only goal.
Remain positive. In time, you will view the birth of this child as a blessing. Everything worthwhile in life is a task. You may often feel overwhelmed. Self-doubt is normal and a healthy part of the growth experience. Counselling for yourself and your family can give you valuable insight and peace of mind.
Don’t just be your child’s mother. Cultivate interests outside the home that are stimulating and satisfying just for you. You’ll be a better parent if you are nurtured personally.
You are going to feel guilty and afraid. It’s useless and stupid but that’s how we’re programmed. You’ll probably feel guilty about taking time for yourself but when you’re refreshed you’ll be able to operate on a higher level.
Laugh. This is your situation and your life. Kids are frustrating and smart and funny. Really work on being able to see the funny side of things. Particularly when people make stupid comments like, “God only gives you what he knows you can handle.” My answer is, “My God’s a woman and she had nothing to do with this.”
Emote. Talk to your spouse, to your parents, friends, counsellors, doctors. To anyone in your life you respect and value. This kid is different and he scares you. Sometimes you’ll feel isolated, angry and frustrated. Take comfort in knowing that you’re working through the issues.
Talk about your feelings even though they frighten you and may frighten others. I don’t want to be this kid’s mother. I wish this kid didn’t exist. Counselling helps replace negative feelings with positive ways to manage your family. Talk to complete strangers – sing the praises of your child to anyone who wants to listen.
Find a good family doctor and good specialists. Stick with doctors you trust and respect, who have a high regard for your family and who agree that you are a partner in the health care of your child.
Search for community supports and government assistance programs. If necessary, develop your own programs. Contact your local community living association and your local political representatives. You may discover services and programs that could benefit your child and family. You’ll certainly meet people with the same concerns who may have fresh ideas.
Love your kid to death. Many people will never understand how you can pour so much time and attention into your high-needs child. That’s because they don’t have the same opportunity as you. Once the doubters see how he responds to love and attention, you will introduce a valuable new perspective to them. As time goes on, this will become your mission.
Make time for other family members. With so much of your attention focused on one child, the siblings can feel left out. Matthew was the best swimmer in our family. Swimming was an activity we could all enjoy together. It’s worth the effort to find pursuits everyone can enjoy together.
Develop a meaningful circle of friends. Significant relationships are key to your connection with society and key to educating others about your family.
Stay connected to your spouse. The best way I can think of to accomplish this is to have great babysitters! Look to local agencies for respite workers, develop friendships with neighbours, ask friends to help, and look after their kids in return. Hopefully, there are grandparents and other family members. If you spread out the requests, no one feels put upon.
I certainly didn’t always follow my own advice. I was Matthew’s mother and in some situations, objectivity failed me. Do the best you can within your power. Raising children is a journey in honesty and reality. It’s also rewarding and joyous.