Don't Pity the Parents

Over the years, I've taught kids with many different abilities and challenges. I know lots of parents with kids who have special needs of one kind or another. I understand, first hand, what it's like to be such a parent, because Bill and I have been raising two such kids of our own. It isn't always easy, but none of us want your pity.

To tell the truth, we don't really want to accept your praise, either, because we are all too aware of our own shortcomings. Even the best parents struggle at times, and parents of kids with high needs often struggle--often!

Even though we don't want your pity or your praise, most of us covet your prayers, because we are very much aware that we can't begin to give our children what they need without a lot of help and guidance from God. We also long for understanding. So, today I'm asking you to cut us some slack!

Disclaimer: Although some of the following examples involve my children and me, I've witnessed or heard about many of these situations from fellow parents of kids with special needs.

If we forget to fill out some vital paperwork for school or therapy or a medical appointment, give us some extra time. We may have needed every spare minute to drive our kids from one appointment to another.

When we are late for meetings or appointments, try to be understanding, and give us a kind word when we finally arrive. Many children with special needs don't like to stray from their regular routines, so they may resist getting dressed, or even throw violent, time-consuming tantrums when it's time to get ready to go. 

On a particularly busy or challenging day, we may forget about appointments altogether. Before that happens, give us a courteous reminder call or text. Our daily organization strategies fail miserably when children are being exceptionally belligerent, or are having seizures, or if they have been hospitalized unexpectedly.

When we seem moody or preoccupied, give us plenty of encouragement. It's hard to remain cheerful and engaged when we are exhausted because we've been up most of the night with a suicidal teen, or a child who can't sleep because of serious illness or repeated nightmares. 

If it seems like our children are lacking vital assistive devices, like wheelchairs, walkers, or hearing aids, ask us about it before you complain to your co-workers. We may be as frustrated as you are, or even more so, when we find that insurance companies invariably drag their feet about paying for major necessities. And that word, frustration, doesn't even begin to cover our feelings when our children nearly outgrow their prescribed equipment before it is finally delivered, months later.

When it is obvious that our children have not had their essential medication, please don't jump to the conclusion that we are bad parents. Medication is expensive! Sometimes insurance companies refuse to pay for critical medication, so kids have to do without until insurance problems are resolved. Some kids learn to deceive their parents into thinking pills have been taken when, in reality, the kids may have slyly tossed their meds under the refrigerator or hidden them under their tongues to spit out later. In some cases, one parent may assume that the other one has given medication when, in fact, none has been given. No matter the cause, please check with us promptly so we can figure out what happened and make a plan to avoid the problem in the future.

We all dread those times when our child's prescribing physician has ordered a medication change. Please be patient with parents and children alike when we have to discontinue one medication due to ineffectiveness or side effects, and slowly ramp up the dosage for new medication. Sometimes, new meds simply don't do the job they were intended to do, so we have to start all over again with yet another new medicine. In the meantime, we all suffer because of our child's extra sleepiness or hyperactivity, or inability to concentrate, or unwillingness to cooperate. No one likes negative behaviors that result from medication changes but, when they occur, parents really appreciate any positive comments about their children. Sometimes, we just need a glimmer of hope.

And speaking of medication, please don't comment self-righteously that you would never medicate your child! Some children have no hope of living a somewhat normal life, or even living at all, without their medications. You can be sure that we also schedule therapies of various kinds, and try hard to provide our children with healthy food, even when they refuse to actually eat anything nutritious, or even if it has to be administered through a feeding tube.

Most parents of kids with special needs have tried all the kinds of vitamins and supplements that have been suggested by their children's doctors, teachers, therapists, and even friends and relatives, in hope that something more will help their children. We also eliminate, as much as possible, excessive sugar, caffeine, artificial dyes, and food additives from our children's diets, but we may occasionally allow our children to have normally restricted, but not life-threatening, foods, so they don't feel left out of every birthday party or school celebration. Please don't judge our actions without knowing all the facts. We appreciate your trust that we have our children's best interests in mind.

It's easy to tell that a child in a wheelchair has some kind of disability. Children with Down Syndrome have a particular appearance that makes identification simple for most people. However, some very real disabilities are invisible, or nearly so. Please understand that children with ADHD, Bipolar Disorder, Autism, PTSD, Depression, Anxiety, Dyslexia, OCD, RAD, and a host of other diagnoses, may exhibit unusual, even annoying, behaviors at times. Keep in mind that they don't often mean to be rude, and many of their behaviors are unintentional effects of their particular conditions. Above all, avoid blaming parents for their children's behavior because, in most cases, parents of children with disabilities are working diligently to modify those same behaviors that bother you.

Please don't assume that every uncooperative child is a brat, or that every parent of such a child is inept. Most parents of children with special needs have received helpful suggestions and effective parenting training for dealing with their children during trying circumstances. We have learned that, sometimes, the best strategy is just to wait until a child is ready to cooperate, while at other times, we need to physically remove a kicking, screaming child to a safer place. So, unless you witness obvious abuse, please don't try to take over for a parent who is dealing with an out-of-control child! Offer encouragement and help, but let the child's parent take the lead in dealing with the child. We may not be perfect parents, but we love our children dearly, we know our kids better than anyone else does, and we usually know what to do during a crisis.

Like most parents, we want the best for our children, and we work hard to help them achieve everything they can. Please don't accuse us of being "helicopter parents!" Yes, we may give our children extra attention that other children don't need. When our children have disabilities of any kind, we choose to actively speak for them when they cannot, and pursue services and interventions that they need, so that they have a chance of reaching the highest level of independence possible for them.

Do you know the best thing you can do to support parents of kids with special needs? Get to know us and our children! Spend time with us. Learn how to effectively help our children, if that's what you want to do, and consider providing respite care when it is needed. Listen to parents who just need to talk.

In other words, build relationships. And don't forget to pray for parents everywhere, especially those whose children require some extra parenting skills.

I thank God continually for the people he has placed in our lives, those who pray for us often and take the time to get to know our kids. You know who you are! Thank you for your prayers and encouraging words, and help when we need it. You make our lives so much better!

It is God who works in you to will and to act in order to fulfill his good purpose.  Philippians 2:13