Fears and Raising Children with Special Needs
October 26, 2011 in Featured, From Julia by Julia Roberts
When we are sharing here on Support for Special Needs about the unique challenges of raising kids that have differences there’s always someone to offer a different perspective. In doing so they make you think about how grateful you are there is someone who truly understands.
We all have different perspectives (obviously) on what to focus on, what motivates us to keep going each day (when the day kicks us in the teeth) and in what way we present our stories (public or private, positive or negative). We all have fears. Some of us share our fears; some have them but are afraid to share them.
During my son’s battle with kidney failure, a botched surgery, kidney transplant, and subsequent frightening depression I had many fears for his safety, for his general well-being, for his life. I didn’t voice my fears about him dying very often and I tried to shut them away during the period of time he was suffering but it was an underlying tone for me. My husband wasn’t able to voice it, think about it, or hear me talk about it either. It was a hard time to have those fears.
Some fears that I and other community members have…
- - Financial security, for us now and our children in the future. Keeping insurance, hitting maximums before our kids are 5 or 10 and the many out-of-pocket costs of taking care of kids with special needs. Many of us are discussing special needs trusts before our kids are five.
- Independence into adulthood. We want our kids to have as much independence as they are able to gain. We worry for their safety and happiness.
- Bullying. We worry our kids that their developmental, physical or mental challenges will be the target of bullies. For me, this started at kindergarten and continues…
- Change. For some of our kids change can be extremely difficult to navigate. Early on we learn that they don’t like natural transitions in the world and we grow to fear it because adjustments are difficult. For parents, sometimes change means a progression in a disease symptom, medication, treatment, or arrangement. Sometimes we fear it. Greatly.
- Acceptance. Tied to bullying of course, but acceptance is huge worry for many of us. We want our kids to grow up being able to experience typical things everyone wants to enjoy…friendships, inclusion in social events, feeling welcome in new groups of people, sleepovers. Acceptance.
- Education. We want what is our child’s right. Reasonable access to education. We want a compassionate education team, we want services that will help them, appropriate classroom settings and people to treat us parents/caregivers as part of the team. We want everyone to help our kids reach their potential. Period.
- Abandonment. Sadly, the acceptance item on this list extends even to people who love us. Our kids aren’t “perfect” and some come with a lot of management; behavior issues and plans, problems with eating, dressing, toileting and speaking. We want the people who love us to try to understand that we’re doing our best and we don’t want you to abandon us because it gets rough. It gets rough a lot.
- Relationships. Fearing change in relationships because of the relentless needs. Along with that I fear losing myself. Period.
Community member, Michelle Howard said, “I hate the word fear. It has too much power over people.” While fear can permeate my subconscious it doesn’t rule my life. For me and most of the parents of special needs kids I have contact with letting fear rule us would mean that we have to pull energy from the job of managing the special needs our kids have and our time is too precious.
I’ve learned to live with fear. It’s something the forces me to grasp my reality and it’s sometimes what propels me to seek out and appreciate the joys.
Originally published in January 2011



In our continued commitment to spotlighting the best resources for families raising kids with special needs, we honor
I woke up one morning when I was 5 and heard my mother sobbing behind the door of her room, my father comforting her. My brothers told me that Grandpa had died. A while later, Mom emerged, hair freshly brushed, lipstick bright red. She cheerfully asked what I wanted for breakfast. I wasn’t hungry, I was confused. I wanted to ask about Grandpa, but Mom’s tight smile warned me not to say anything that might upset her. While I pushed a piece of French toast around my plate I had a realization–an absolute epiphany: To be a grown-up means that you have to hide your sadness!
I’m going to do a little pseudofaulknerjoycetype thing right now and just write as a sort of exercise how my morning went in all of its chaos and, sadly, mundanity (is that a word?) because picking or peeling or lowering your child to the floor and then up so many times that it becomes a cliche is a cliche is a sad sort of affair but that’s what happened when Oliver and I were in the bathroom with Sophie, brushing our teeth or I was brushing hers and Oliver was brushing his own and Sophie got that faraway look in her eye and she already was acting weird and probably shouldn’t have been going to school but I just couldn’t take it anymore, keeping her at home and I thought, possibly erroneously and certainly irresponsibly that I was just going to send her to school so that her aide could watch her instead and anyway, we’re brushing teeth and Sophie’s body stiffens and her head turns to the right and she lets out a groan as I simultaneously lift her up, stiff so that her hand gets caught in the shower curtain and sort of wraps around it and I’m still holding her and trying to balance her horizontally mainly because she broke her leg once during a seizure when it snapped from the pressure of the tonic thing but anyway Oliver is staring aghast and toothpaste is still in his mouth but he knows to try to unwrap her hand from the shower curtain so that I can carry her jerking now and horizontal out of the bathroom and around the corner to the bed where I lie her down and then simultaneously we hear the woman driving carpool beep in the driveway so that I have to holler for the boys to get going and don’t make them wait but I also grab Oliver and look him in the eyes and tell him that I know it’s awful but it’s going to get better and I love him and Sophie will be all right but he runs out and down the hallway and collides with Henry who has missed this show and sort of brushes past Oliver on his way out the door and then Oliver yells, at the top of his lungs, which is a very good expression:


