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6 Tips For Caregivers Who Parent A Child with Developmental Challenges

Posted by Paula Kavolius

Some people like to participate in extreme sports because they want to feel the high level of physical and mental exertion. I have experienced this sensation, not through snowboarding or cliff diving, but by taking care of my family of three boys—especially my son with special needs. Those of us who have been blessed with the love and challenge of raising a child with developmental challenges know what I am talking about. I call this extreme parenting.  I have learned how to prepare for the moguls, ruts and icy patches and have developed the specialized gear needed to make the rough ride a little bit smoother and at times, euphoric.

Caring for my son, Timothy, has been both my greatest challenge and biggest reward in life. There has been immeasurable joy, kindness, despair, frustration, anger and disappointment. There have been times that I have been hit so hard, I thought I would never get off the floor. Those days are over now as I have mastered extreme parenting and I’m happy to help you develop that same level of expertise.

Give Faith a Chance.

When we believe, we acknowledge that we are never alone.  You give yourself a wonderful gift when you recognize that at any moment of the day you can ask for and receive help.  Responsibility is an honor and you have been chosen for the incredible task of raising one of His most treasured children. All prayers may not be answered, however a deep trust in a perfect plan for you and your child allows it to unfold effortlessly and beautifully.  Out of faith come many gifts; such as gratitude for the little things, courage, patience and above all else love.

Life is all about Plan B.

Expect delays and changes to your daily game plan. Life is an endurance test and the sooner you learn to rise to the challenge, the more you will enjoy it!  The next time you are driving down the highway and get two flat tires with your son in the backseat, don’t panic. Think of it as if you hit a golf shot behind a tree and you need to get back on the fairway. You are in the game of extreme parenting and can handle anything life throws at you.

Laugh at yourself and everyone around you.

Bill Cosby said, “Through humor, you can soften some of the worst blows that life delivers.  And once you find laughter, no matter how painful your situation may be, you can survive it.”  If your husband puts an older son’s oversized football shirt on your child and because it’s too long, you don’t realize that he has no pants on. You, in turn, unwittingly put him on the bus thinking, well the shirts long, but it’ll have to work. Later that morning, you are surprised to get a call from the school inquiring as to why your son has no pants on. Be sure to pull to the side of the road and laugh until you can laugh no more.  These are the things that make this journey hilariously funny, unforgettable and will help you develop personal resilience.

Remain collaborative with your school system.

We are committed to doing whatever it takes to help our child.  Sometimes this means swallowing our pride and meeting our preconceived adversaries in the middle. Team building is not easy but it must happen for the benefit of your child. I have been on both sides of this playing field and have seen unexpected wins from perseverance and patience. Sometimes a compromise in one area opens the door to a greater long term gain. You want your child to flourish and your Team can be an invaluable resource when you are all working together. There is always a way through an issue if you remain calm and collaborate.

Purchase the best equipment or devices to make YOUR life easier.

Make a list of all the things you can do to improve your quality of life. Whether it’s installing Plexiglas on your French doors or turning your dining room into a bedroom, you must discover unique ways to expand your family’s enjoyment and enhance their wellbeing.  My personal favorite is my rubber grape solution. Tim enjoyed running around and turning televisions up to full volume. Since we had five television’s, I spent months running around and turning down the volume. One day, I noticed Tim was petrified of grapes. The next day, I purchased rubber grapes and taped them to every television. He never touched a television again. Brilliant!

Enjoy the ride.

Never let a day go by without thinking about something wonderful about your child.  These children are pure souls and they are here to show us what is truly remarkable in our world. When I am awaiting a root canal, I never think of my son who is getting all A’s in college. I think of Timmy who is petrified of a grape, won’t get out of a car when he hears a dog bark, and pulls the covers up over his head when he sneaks a box of cookies into his bed.

I pray for him and hope that his pants stay up and that he won’t pinch or pull anyone’s hair today.  When I hear he jumped in someone’s pool all by himself I hit the lottery.  He is the love of my life and there is no greater blessing.

Paula is the founder and President of the House of Possibilities, bringing respite care to families caring for a child having developmental disabilities. House of Possibilities (HOPe) is the organization that is creating a new paradigm of support for families having children with significant challenges.  By providing much needed relief to families, HOPe offers a stimulating and nurturing environment for those who are in need. Go to houseofpossibilities.org, send me a tweet @ _possibilities_, or like my Facebook page.