5 'Helpful' Responses to My Child's Complex Issues That Don't Help
I believe one of the biggest challenges special needs parents face is trying to unravel the complex issues associated with our children. Sometimes it’s asking, “Why won’t he eat?” or “Why is she so anxious during social events?” Parents like my husband and me not only have to deal with issues such as these, but we’re also trying to understand everything associated with our son medically.
For example, a few years ago, my son started a new medication to treat his primary diagnosis, tuberous sclerosis complex (TSC). A year after starting this medication, he was seizure-free, but he also stopped eating. Feeding issues weren’t new to him, but giving up eating was, and we became concerned. After asking adults on the same medication and speaking to his clinic and nutritionist, we have a better understanding of how the medication may be affecting him and a plan to help him get the nutrition he needs, but we still don’t fully understand it. He could be refusing to eat because of his autism, medication or behavioral issues. We also realize we could be partly to blame for finicky eating habits.
It’s particularly difficult for us to understand how to manage issues like this, so when others ask questions or make suggestions, trying to explain it to them is almost impossible.
I know my husband and I aren’t the only parents exhausted by the questions and unwanted advice over subjects we’re trying to understand ourselves. I want to share a few insights about what it can feel like for special needs parents when conflicts arise over our child’s issues.
1: Unwarranted parenting advice makes us feel like we haven’t done enough for our children.
Although we’ve spent years with professionals to try to help our child work through various problems, there’s no magic fix. There will still be times when he has a meltdown, inflicts harm on himself or others and many other things we’d rather not see. This doesn’t grant anyone the right to offer advice when it isn’t needed. The truth is, we don’t like seeing our children struggle either. That’s why we work hard to help them. Don’t forget they’re often having trouble in ways we don’t understand.
2: Telling us what you think our child should or should not do causes unwanted stress.
There’s a party and all the kids are lined up, ready to play a game, and someone says, “Everyone plays, even (insert our child’s name here).” We’ve even been told we have to sing the “Happy Birthday” song to our son even though it causes him anxiety and will set off a meltdown. We do want to help our child test his boundaries, but we’re also well aware of those boundaries. We certainly don’t appreciate someone else making assumptions about what our child can or will do. Asking before assuming is always the best approach.
3: Pointing out our child’s issues is upsetting.
I don’t understand why others feel the need to point out our child’s issues. We’re obviously aware of these things; he’s our child. Instead, try acknowledging the good things our child is doing.
4: Trying to “fix” our child undermines our parenting.
Trying to “fix” things, especially without our consent, is not welcome. We aren’t neglecting our child when we choose not to do or offer things others may feel he needs. Sensory issues are usually behind the anxiety he feels over getting a haircut or being offered a new food (with a new look or texture), so unless you’re a expert on sensory or anxiety issues associated with autism, please stop. The best thing to do is ask, “How can I help?”
5: Ignoring requests associated with our child will indeed cause friction in our relationships.
My late grandfather meant well when he would ask my son if his food was “good” every time my son sat at the table with him. My son’s response to the question was always the same: he’d scream and hit himself. This never stopped my grandfather from asking. Mealtime is usually the biggest cause of anxiety for our son. It takes a lot of effort to get him to sit at the table for a meal, and getting him to eat is an even bigger deal. After all the work involved, it would be undone with the same question from my grandfather: “Is that good?” Ignoring the obvious friction the question caused made mealtime a problem for all of us.
Sometimes an innocent question or action could cause anxiety for our child, so please respect our requests regarding him.
The bottom line is this: We need the support of those around us. We understand it’s hard for those who love our child to feel helpless because they want to help. The truth is, we feel helpless, too, but we’re doing our best even though we don’t have all the answers. We want to be trusted to know what’s best for our children. When we all work together, we have the best chance at helping these wonderful children have a happy future.
Follow this journey on Crossroad Trippers.
Lead photo source: Thinkstock Images
My husband and I have four children. We have numerous daily challenges. Our youngest son suffers from epilepsy (including Infantile Spasms) and developmental delays because he is severely effected by a genetic disorder called Tuberous Sclerosis Complex. Seven years after our son’s diagnosis, I was diagnosed with Rheumatoid Arthritis and Fibromyalgia. I write because I don’t want anyone to feel as alone as my husband and I did the day we learned our son had a life altering disease, or as alone as we often feel struggling with multiple diagnoses within our home. It is difficult for me to share my life with others, but my hope in doing so is to reach someone across the digital divide and say, “You are not alone.” Our challenges can certainly tear us down, and at times they have, but we hope the lessons of which can better our lives. I can only hope to help others by sharing our experiences.
danielle-myers