In a recent viral social media post, Rachel Olstad expressed what she and many other families with children with disabilities would like to express to those who help care for their children.
We have CHALLENGES. We have the normal challenges of family life and raising kids. But we also have additional challenges related to having a child (or multiple children) affected by disabilities.
1. We are grieving.
When we find out our child’s diagnosis, we have to deal with the loss of the dreams and expectations we had and create new ones. And then we have to do it all over again when our child doesn’t meet the next milestone, or we see his cousins outpacing his abilities, or she turns 16 and will never have a driver’s license. Please be gentle with us as we grieve, time and time again. Share diagnoses (or suspected diagnoses) with us in a compassionate, gentle manner. Understand that therapies often point out to us how delayed our child is and can be a painful time for us.
2. We feel isolated.
We feel so different than our friends and family who don’t experience disability. We may not have found our tribe yet in the disability community when our child is young and we don’t understand her disability completely yet. You may be the only adult we see all week, so we may talk your ear off. We may feel like you’re our only current lifeline.
3. We are envious.
We see others who appear to have life so much easier than we do, and we can be jealous for that. Please be sensitive when you are sharing about your own lives. I once had a speech therapist tell me that she knew what I was going through since she had a dog who had recently had surgery.
4. We are worried.
We are worried about so many things—is my child going to ever learn how to roll over, communicate, live to be 3 years old? Who’s going to take care of my child as I age or after I die? Are my other children getting enough attention? Please reassure us and give us positive stories and scenarios that are encouraging.
5. We are stressed.
Our workload is huge. Our kids’ behaviors are huge. Our kids’ medical needs are huge. Our marriages and other family relationships are under large amounts of stress. In fact, there was a study done that showed mothers of kids with autism have THE VERY SAME stress hormone levels as soldiers who have seen combat. We have PTSD from medical issues as well as our kids’ meltdowns. Please provide a calm environment so that during the 30 minutes our kids are with you, that can be a time we can regroup and take a breath.
Photo credit: DisabilityisBeautiful.com
6. We are tired.
All that worry and stress? They cause sleepless nights. And on top of that, some of our kids DON’T SLEEP. My son slept 4-6 hours out of every 24 for the first four years of his life…and only in 15-minute snippets. He would stop breathing quite often, so if it was my turn to sleep, my adrenaline was still pumping and my ear was always listening for the next emergency. We are not just tired, we are sleep-deprived, often for years. If I fall asleep in the waiting room or choose to stay in my car to catch a nap during therapy, please reassure me that good self-care when I can grab it is very important to my child’s well-being.
7. We have financial burdens.
We are stretched to provide for our families with all of the extra costs that come with having a child with disabilities. All those toys and therapeutic tools you recommend might not be within our grasp. Help us find ways to borrow or make or get a grant for the things our children need.
8. We don’t know who we are anymore.
We have entered a new community we didn’t expect to join. We have lost old friends. We don’t know where we fit anymore. We don’t have time to go to the gym or get our nails done. Help us find our new normal and reassure us that our new tribe is awesome.
9. We are angry.
Why did this happen to my child? Where is God in all of this? Why is insurance not covering what my child needs? Why doesn’t the school district include what I think my child needs on his IEP? Why don’t the doctors listen to me? Understand that our anger is a secondary emotion to whatever we’re feeling underneath it all. Help us fight our battles when you can. Point us to community resources, including faith-based ones. Don’t take our moods personally.
10. We love our kids.
We love our kids more than anyone else does. We would pretty much do anything to help them reach their full potential. We know our kids better than anyone else does, too. Please trust our mom instincts. Listen carefully to what we tell you about our children, and hear it with your heart. If you want to push us, do it with kindness and compassion and give us choices. Also, show us that you enjoy our kids. Be a positive reporter and get excited with us over each new little milestone our child makes.
We are BLESSED. Our children cause us to be more sympathetic, empathetic, compassionate people. Our kids split our hearts in two and make them open to a larger circle. You, as my child’s therapists, have such a huge part to play in my journey towards acceptance and seeing the blessings. By being a blessing to my family, you are teaching me to see through new lenses and to give to others in new ways. So thank you for always being there for my kid and for pouring into our lives. Even though it’s a paid job for you, we view you as part of our larger tribe. You’re on our side, and for that we will always be grateful.
Guest blogger Rachel Olstad is the Director of Disabilities Ministry at Jacksonville Presbyterian Church in Jacksonville, Oregon. One of her favorite ministries at her church is Camp Levi, a retreat for families with disabilities. She began her journey into the world of disabilities in 1990 when her oldest child was born with spina bifida and subsequently diagnosed with autism. She and her husband Brent have been involved in disability ministry for almost 30 years. Rachel’s passion is to encourage churches to minister to and with individuals and families with disabilities so that all can worship together.
