We do our best as parents to raise all of our children to be as independent, self-determined, and ready for the realities of this world as possible. With our children who have disabilities or additional healthcare needs, it’s more important than ever to work toward that goal.
One day, our children will be facing the transition from high school and will need to be ready to handle new responsibilities and a new system of supports. One day, we will pass away or our own needs may prevent us from attending to their needs.
When times such as these become realities, will our children be ready?
Raising our children who have disabilities and/or additional healthcare needs to be as independent and self-determined as possible is a very important role for us as parents. It’s our job to make sure our children feel comfortable, welcome, and respected in this world, so that they can confidently express their wants and needs to others at all times. They need to feel a sense of belonging in the community.
Are there obstacles preventing this from happening? Work hard at eliminating or minimizing those barriers! Don’t overprotect them from the realities. Teach them how to identify and approach obstacles. Help to create confidence in them for facing obstacles and adversities head-on, and provide guidance for them to be a full participant in this entire process (which is often quite grueling and stressful, to say the least). If we always keep in mind the vision of our children one-day becoming adults, our efforts will be successful.
What are your hopes for them when this time inevitably rolls around?
Do you want them to be fearful of navigating the world without you, or would you hope that you’ve built in them enough courage to face their fears and challenges successfully?
Will they have a strong foundation in problem-solving barriers and accepting a wide range of emotions that are bound to be present during each transition (or new environment, or new service, or new obstacle, or new people in their lives, etc.?)
Go to places in the community. Visit friends and relatives. Continue to go on vacations, even if locations must change. Go out to dinner. Go shopping. Go to the public pool and playground. Don’t allow fears, insecurities, discomforts, or “what-ifs” to stop you from going places. When you find obstacles, decide if it’s an issue you want to address.
Let everyone get to know your child and learn about the new supports and adaptations you might need to be successfully included in everyday life. Let everyone see that possibilities exist if we all do our part with problem-solving the obstacles. Let your child become known and respected by others in your community for who they are. This helps others to build acceptance of differences in all people. In doing this, you are also helping to change perceptions and attitudes.
We found or created, many opportunities for our daughter, Alexa, now 31, but her favorite was being the statistician for four years for a girls’ ice hockey team. She had her own adapted ice hockey stick that attached to her power wheelchair. She played on the ice at rinks and even used it to play street hockey on the cul-de-sac with neighborhood friends.
Get your whole family involved with supporting self-advocacy efforts while your child is still young. You will be amazed at how many ah-ha moments you will experience.
Most of us who may not have had prior experiences or exposure to people with disabilities (which is often the case due to the continued overwhelming amount of segregation that still occurs in our schools and society) will have preconceived ideas about potential and expectations. We assume since they were segregated, it happened for a good reason, right?
Segregation occurs when people focus on weaknesses rather than strengths, and when stagnated systems don’t place a priority on creative problem-solving.
Self-advocates are outspoken critics of segregated systems, telling story after story about the scars those environments have had on rebuilding their lives to be self-determined. If you connect to the self-advocacy movement when your child is still young, I guarantee your entire perspective will change and your mind will expand to new possibilities for your child’s life and your family.
As a matter of fact, when Alexa started third grade, our family hired an adult self-advocate, who uses similar supports as Alexa, to meet with her weekly for three years! That was an amazing experience! I’m not sure who learned more – Alexa, or us!
When you hear about scheduled local, statewide, or national advocacy rallies, take the time to attend, or at least discuss the reasons and expected outcomes with your child. Show them the power of speaking up for one’s rights. If the rally was a success, discuss the impact it might have on your lives. If it was not, find out when a follow-up advocacy effort will take place. Encourage them to meet their congressman, or write letters of concern to them about important issues facing their lives. Look for all sorts of opportunities to support their communication for change. Let them know that we must never give up, and how people working together toward goals can have an impact. Encourage your child’s ability to be a self-advocate!
When we requested that our school district retrofit the full-size, regular bus with a wheelchair lift for my daughter, a well-intentioned guidance counselor stated,
“Why would you want her to go on the regular bus? Kids can be so cruel.”
My response was simple.
“Because I want her to be with her peers and experience the real world.”
I didn’t want her to be in a more protective environment than other children. I wanted her peers to get to know her. I wanted the school district to know that she has the same wants, needs, desires, and feelings, like all the other kids. If kids bullied another kid on the bus, I’d hope the school had a discipline policy for dealing with those issues. We’d deal with it if we had to face it. I wanted my daughter to develop a thick skin to attitudinal differences expressed by people, too. I wanted her to know that issues can be dealt with through problem-solving.
A lift was put on the bus and she rode that bus, with all the neighborhood kids, for twelve years. Within that time, there were only two kids who attempted to bully or disrespect her, and the other kids on the bus immediately rallied to her defense, and the bullies were disciplined.
If you haven’t already, find your child’s method for communicating, and then encourage them to use their voice to ask and answer questions themselves. So often, we as parents talk for our children.
When my daughter was in first grade, we visited a doctor who asked her a question. Since my daughter didn’t start answering him immediately, and since she sometimes does have difficulty being understood by others, my husband and I began answering for her. The doc shushed us and said, “No, Mom and Dad – I’m talking to Alexa!” It was one of the greatest lessons we ever learned.
Show patience and respect for their thoughts and abilities, and encourage them to communicate to their fullest potential. Your child will soon realize that their thoughts and feelings are important and worthwhile. This helps to build their self-esteem, which is necessary toward building skills for self-determination.
It’s crucial that if they use a communication device that they (and you) are trained in its use, it remains updated and in working order, and it stays with the user at all times. None of us would appreciate having duct tape over our mouths, preventing us from speaking, so why do so many people lack a sense of urgency in finding appropriate modes of communication? Just imagine the chronic frustration, which can then lead to behavioral and psychological issues as well.
When you search for resources to assist you with supports and problem solving, be sure your child is involved in this activity.
Help them to learn how one finds the right resources, and how to evaluate those resources. When is it time to find different resources? Do this with your child, so that they will have a comfort level for doing it themselves.
Ask another parent who has “been there”, or an adult self-advocate, for resource suggestions in dealing with barriers, whether they are physical or attitudinal ones. They have keen insight into which ones may be the most effective for your needs. Get connected to like-minded individuals, including other parents, self-advocates, advocacy organizations, etc. and build relationships with those who have created (or continue to strive toward) self-determined lives.
Your children are never too young to begin building skills for self-determination.
From the basics of giving them appropriate-level chores and responsibilities, allowing them to make choices and decisions, and talking to them about their heritage and ancestry through photo albums and scrapbooks of stories, we build upon each success.
Keeping in mind the outcome of seeing your child as an adult, comfortable and confident in problem-solving and communicating their wants and needs when you are no longer there, is a powerful motivator.
Know that there will likely be discomfort at times, but there is always another person around the corner to help you through those stressful periods. Never give up, as it is surely worth the journey.
When that time arrives, and your child is grown, you can look back and tell yourself you’ve deserved every new gray hair on your head, and are proud of it!
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