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5 Things Parents of Kids With Autism Want You to Know

I cannot tell you how many times someone has stared either because my daughter was screaming “I want Jesus!” as I denied her wish of obtaining her third nativity set while exiting the HomeGoods store during the holidays or the glances we get when we walk into a restaurant with food in a Ziploc bag to account for her food allergies. As a mom to a daughter on the autism spectrum, and a community advocate, there are a few ideas that we would love to let the “rest of the world” in on.

It is easy for most families to run errands, go to the store, pop into a restaurant for dinner or sign up for a summer camp. It takes a bit more for those of us with children who have a disability, and unfortunately, it is not always easy to communicate our needs, frustrations, or the love that we have for you. It does not matter if you are a friend, family, or stranger, if you knew these few things, I am willing to bet your perspective might shift. So, bear with me — by surveying many families and countless moments — here are the top five things we want you to know!

1. We miss you.

Seriously, we miss spending time with you and going to barbeques and just “hanging out” – but that simply isn’t something we can do very easily. It takes planning, not only to come up with the time but to pack the food our child eats, either because they have dietary issues, are restricted by food allergies or are simply picky eaters. We may need to prepare a bag of alternate clothes (just in case), prepare a bag of toys or must-have security items. Then we need to sit down, talk to our child and help them understand where we are going, what to expect there, and determine ways for them to cope with the anxiety they will feel.

Please realize that this is simply the “planning and prep” phase. Once we arrive, we may need to be in constant observation mode, never letting our child out of our sight to make sure they don’t elope or eat something unsafe, and watch for signs of an impending meltdown.

2. We are exhausted.

As you may have gathered from my notes on what a social outing looks like you are likely able to visualize that we stay a bit tired. “A bit tired” would be a refreshing day. We are plum worn out! Not only are we navigating all the ideas from insight #1, but we are also doing it while managing a hectic therapy schedule, getting our honorary master’s degree in understanding the diagnosis, explaining our kids to each school, medical or social professional we meet and doing it all on extraordinarily little sleep. And our kids often have irregular sleep schedules. If you meet a parent of a child with a disability that is well-rested, watch out, there is no telling how productive they might be or what all they will be able to accomplish.

3. We worry.

I realize that all parents worry, but we often worry about the daily stuff, like keeping our kids alive and safe. Then we worry about “level 2” things like will they have friends, before taking it up a notch to worry about who they will be and what they will do as an adult, and then the ultimate worry — what will become of them when I am gone? All these worries float around in our heads while we worry about finances, schedules, and relationships. We are expert worriers.

4. Everything is hard either financially or emotionally and often both.

I mentioned the worries just a moment ago, but the reality is just as hard. Our budgets are so tight, there are always things we would like to do or dream of that simply do not “fit.” We go without family vacations to pay for treatments, we go without new cars to keep money available for what is most important, but mostly we do this because there is no cost too high to help our children be their best. Some of us have children with aggressive behavior and when they lash out it is emotionally and physically challenging. We have mastered the look of keeping it together, but beyond what you can see, there are certainly hard days.

5. We love our babies!

Now that I have identified some of the “issues,” I ask you to keep your sympathy. More than anything in the world, we love our children. They bring perspective, light and joy. They may not be able to conform to our world, but if you spend time in their world, it is transformational. I do not know any parent that does not love their child wholeheartedly and often struggles with wanting others to know and love them the way they do.

If you only have one major takeaway, know that you are special, loved and appreciated — we just may not have the time, energy, money, or mental capacity to tell you. For each of you that is standing alongside a friend or loved one as they navigate this journey — you are cherished. For each of you that make accommodations, help, and support us, we are grateful. And for those of you that may not understand, that is OK too. We do not wish anyone to be a member of this club, but we welcome you and I can assure you — you are not alone.

Learn more at Abilities Workshop.

Getty image by Ridofranz.

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