Raising a child is not an easy task. It never was and it never will be, which is why being a parent is considered to be one of the most special and life changing experiences of our lives. It requires patience, sacrifice and tons of love and care. When it comes to raising a child with a disability, the tasks may seem to have doubled or the risks may seem higher, but overall it is mostly our attitude that will help us get through the day and night and have a happy and healthy family. For this blog post, we spoke to several super parents, who have children ranging from 6 to 15 years old. We simply wanted to collect insights into the lives of families with children with a disability. They all shared their advice and gave examples of how they manage to do it. Below are 6 simple ways for you to keep your sanity as a super parent and rock it!
- Never compromise your relationship with your partner
Who else could ever possibly love your child as much as you do? Who is willing to make the sacrifice necessary to raise him or her? Maintaining a healthy relationship with your spouse/ partner is one of the most, if not the most critical elements of raising a child with a disability. Therefore, maintaining the emotional connection with your partner is essential. You will both need to accept that raising a child with a disability will create ambiguity about the future. You should work towards achieving a perfect harmony between each other. Establish a good communication system where you discuss everything and lay out all your concerns. It is important for the both of you to find time to remember the things you loved most about each other initially. Try to keep your relationship fresh and exciting and always continue to create memories. Remind yourselves that you are important to each other and that you need each other more than anything. Never stop having fun with your partner. This is the number one and most important rule to super parent’s guide to sanity.
- Set your non-negotiables
When you have a family and are raising a child with a disability, there are millions of things you need to think about. You can lose sanity over that easily. Take a deep breath! Remind yourself that you don’t need to do everything at once. Setting your non-negotiables is important to stay on top of things and keep your mind at peace. Maybe you can’t go from a day of touring or shopping with relatives directly to a restaurant and then a movie due to making time in your schedule for an enema. Try to work together with everyone to find a good alternative and involve your kid with a disability when appropriate. Is it possible to take out instead of dining at the restaurant? Can you come back early from touring or skip movie for once? Try to find flexibility in everyone’s schedule and create the best possible solution for everyone, without compromising on your non-negotiables.
- Take care of yourself and pamper yourself
Just like the safety instructions on a plane before takeoff, it is important to put the oxygen mask on yourself first then care for others around you! How are you going to take care of your child, if you don’t take care of yourself? Find time to exercise, sleep or have a night out with your once in a while. You have to be the BEST person you can be. Do what is necessary to achieve that so you can be 100% when you care for your child with a disability.
- Get Creative in the Way You Leverage your Network
It’s ok to ask people for help! You should think of different ways to leverage people’s potential to provide support. Can the grandparents take your child to wheelchair basketball practice on some weekdays when you are stuck at work? Can the babysitter help with catheterization? Could the driver also pick up groceries on his way? Don’t let “roles” or “past experiences” guide your decisions to leverage support. Make sure you trust the people first and with the task and let them shine by allowing them to do it their way. Do not expect others to do the task the same way you do. Everyone has their own style and a different pace. You never know, you might learn something new from them too! Lastly, seek out other parents who have a child with the same disability as your child. You can also tell your doctor to share your contact information with other parents if they are interested in connecting as well. Parents learn so much from each other all the time. Continue to grow this circle as they can become your safety net since they know the struggles you’re going through first hand. If your child is involved with an adaptive sport team or organization that is a great way to meet other parents. Some super parents admitted that they spend more time with the parents they meet at practice than with their other friends.
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You have to realize that you can’t do it all and get it all done. Some things you will have to let go of. This is why we have the “non-negotiables list”- rule number 2. Super parents have suggested putting it all up on a white board and then erase the ones that are not non-negotiable, or not a priority. Putting the whiteboard in the kitchen where everyone can see it easily is a good start. Write all the tasks, including those who are responsible for delivering them. Write down the tasks your kids have too. This will teach sense of responsibility. Writing down the names of those who are assigned to a task helps everyone be on the same page, but it especially helps kids feel comfortable and safe knowing that there will be someone at school or practice waiting to pick them up. Go through everything every week with everyone and make sure all family members understand it. As soon as you realize a task is not deliverable, make sure to communicate with the parties that will be affected by it sooner than later. This will help alleviate the pressure from you and will enable you to refocus on the non-negotiables.
Bonus tip: If you can try to combine tasks together to save time. Some super parents shared that they have successfully combined occupational therapy and enema or schoolwork together.
- Humor & Forgiveness
Last but not least, have a sense of humor and be forgiving. Your approach to issues will impact outcomes as well as your relationships, especially with your husband and kids. Try to see those who are around your child as team partners. Think positively of them. Everyone wants the best for your kid. Be a mediator, cheerleader and a team builder. You will get a lot of cooperation from having a humorous and forgiving attitude. Be able to laugh at small mistakes.
Don’t wish your life was different. Accept and embrace it with its ups and downs and have lots fun! You are a super parent! You got this!