The time is 2:00 a.m. on Saturday night. The night before my daughter, with special needs, leaves for a weeklong spring break camp. I trust them to take care of her. But, I still can’t sleep. I go over and over the list of medications, did I get her name on every article of clothing, did I explain all of her needs, her dislikes, her fears, disabilities and her abilities.
It can be daunting, and no more so than when you are a single parent. She needs this time away from me to gain experience in dealing with others and to have some fun, without me telling her not to eat too much, brush your teeth, don’t touch that or inside voice.
As a parent of a child with special needs, I personally felt I was alone but when I opened up and allowed doctors, psychiatrist, and specialists to help I realized just how deeply I had isolated myself and in turn my daughter.
From the first sign of something being different I had people telling me, “you just baby her too much.” “You let her get away with too much.” “You don’t push her hard enough.” I knew a child with intellectual disabilities was one thing but one day she would be an adult with intellectual disabilities and that would be a much more difficult world. I gradually learned to discern between genuine hands on advice and those who just thought they knew better. It’s so easy to judge another; to say she needs speech, she needs more exercise, she needs less carbs, she needs she needs she needs! What any child becoming an adult needs from their parent, especially if they have special needs, ADD/ADHD, Learning Differences or Intellectual Differences is truth, freedom, patience, respect, love and understanding of when to step in and when to step back. I know, not easy but doable.
For people who witness a mom being firm with a child in a wheel chair, or see a dad give his overweight child a frozen yogurt it can be tempting. What some don’t get, boundaries are malleable and dependent on the current status of your child’s day. Each experience has to be weighed and calculated on merit of need, want, progress and sometimes peace.
Special needs means just that, different circumstances call for creativity, and no one can know how it feels, what it looks like or what needs to be done unless they’ve lived their life caring for a child/adult with special needs.
In order for my daughter to live in this world and have some semblance of a life I must negotiate all aspects until she finds that place where she can be safe, happy and herself with or without me.
One place she can do all that is Camp Summit, It’s located in Argyle, Texas and it is paradise. It’s been in operation since 1947. Some of its attendees have been coming for more than 30-40 years. They invite all, ADD/ADHD, Intellectually Disabled, Sight/Hearing Impaired, Physically Disabled; they’ve gotten it right. This camp is special in so many ways but most of all the volunteers do not judge. They do show respect, demonstrate care, exemplify patience, share love and can be understanding as to when to step in and when to step back.
They offer structure with flexibility; care and fun, there is a pool, horses, specially designed obstacle/ropes course, cooking classes, art class, and the dance.
It is all I would want my daughter to experience in a safe and caring environment. I’ve included a link to a documentary that can show more than I could ever say in words. This documentary, Real Life Angels, demonstrates the excitement, the fun, love, care and respect the campers receive at Camp Summit. My hope is that as a parent you are willing, no matter how scary it is, to allow your child to have something that you alone can’t give them. Admitting that was the first step for me to allow my daughter to build her self esteem while saying, “WhooHoo!”