Setting goals with a child who has special needs

Every New Year symbolises the hope of a fresh start; a time to pause and reset with renewed energy and focus. While many people can articulate their goals without hesitation and with all the conviction of an unchallenged year, few people actually turn those convictions into action. For families who face the unknown future that comes with raising children who have special needs; the dawn of a New Year is either a time when we feel hopeful or overwhelmed or both.

First things first: YOU

Many parents are somehow lulled into the lie that it is honourable to put your child first at the cost of your own mental, emotional and medical health needs. But by not prioritising your own needs, you can’t function to your best capacity for the child you love so dearly. This is especially challenging for parents who are full-time caregivers.

I am preaching to myself here too. Ten years ago, my daughter Savannah (an autistic person born with cerebral palsy) had an operation after which she struggled to walk independently. I fought the good fight of maintaining her physiotherapy program while maintaining her education and her care, and still being a wife and a mother to my other children.

In order to keep up with all the demands, I skipped meals, stopped exercising, and slept only for a few hours a night. In time, I developed health challenges that affected my daily functioning. While my health challenges could be overcome, the greatest battle I faced was to value the time I invested in myself. It remains my long-term goal to not just survive my life as a caregiver to a child with special needs, but to thrive in it.

If this example touches a nerve for you, start 2020 by investing in working with a life coach who understands the unique challenges you face and who is invested in helping you to create the future you want.

A new decade beckons. Make yourself its priority. That is goal number one.

Is there a point to set goals when life keeps throwing curveballs at you?

Too often in the life of families with children with special needs, we believe that “when the child with special needs is better, or healed, or cured, or has achieved a certain ability” then we will live out our goals and dreams. Take it from someone who has passed through all those moments in life while caring for my daughter: there is no better time than the present to set goals for yourself and your family.

I wrote about this in The Safe House.

“To my husband and I, it is also vital that all three children are raised with an understanding that while the needs Savannah has means we design our family around caring and supporting her, it does not limit our individual dreams. We just have to find ways to give each other the space to do that.”

The act of intentionally sitting together as a family to set and share goals changes the dynamic of the family. Everyone is heard and everyone is reminded of the potential they each have.

Why not make that your second goal this year?

To give yourself and everyone in your family permission to chase their dreams. In so doing, you have no idea the wealth of love and experiences that your child with special needs becomes a part of.

I have so much hope for 2020 for my family and for yours.

Happy New Year and may the reward of the next decade be peace in your heart and a life lived well for both you and your child with special needs.

Desirae Pillay is an inspirational writer and speaker. She is married to Michael and they have three children: Savannah, 23; Talisa, 16; and Eli Michael, 11. Savannah is an autistic person with cerebral palsy and was born to Desirae when she was eighteen years old. Life has never been easy, yet Desirae believes it is still worth living with great kindness and she is passionate about parenting. Her life’s work is about sharing her truth to promote faith, hope, and love as a blogger, speaker and freelance writer. Find her on her blog: http://amillionbeautifulpieces.co.za/