Dear Family and Friends,
We’re on our way to visit with our autistic boys in tow for the holidays, and here’s what we want you to know.
Our lives are a bit chaotic, and we parent just a bit differently at our house for reasons you cannot fully understand. These things may seem odd, different or just wrong as far as you’re concerned. I get where you’re coming from because I used to think the same way, but there really is a method to our madness, and if we’re going to get to be a part of each other’s lives during this holiday season, there have to be some ground rules.
1. Try to be understanding.
We fight every day to make the lives of our kiddos as productive and fulfilling as possible. This means many sleepless nights, meltdowns, IEPs, ignorant educators, medical evaluations, neurological evaluations, testing evaluations, doctor’s appointments, pharmacy stops, short order cooking, ritual habits from before daybreak to after bedtime, countless therapy sessions, driving the equivalent of a super commuter every week and virtually no time for ourselves. We do not need or want your sympathy or praise, but a little understanding will go along way.
2. Don’t be offended or get defensive if…
We stop at McDonald’s before coming to your house to grab some chicken nuggets. My kiddos will only eat a few specific things made a certain way with specific tastes and textures. And no, they will not eat what you put in front of them. We love your cooking, but my boys do not have the same adventurous palates. We are trying to compromise.
Also, my boys sometimes choose to close themselves in a room and play their electronics as opposed to playing with the other children. They do not like lots of noise or stimulation around them. It truly hurts their ears and overloads their senses. If they do come out for snippets of time, we see that as progress. Let them come and go as they please. Enjoy the time they are out and around people. In fact, it would be helpful if you plan on having a safe room set up for them to escape to. You don’t need much in there except an outlet to keep the electronics charged.
3. Try not to react (or overreact) to meltdowns or tantrums.
There is a difference between a meltdown and a tantrum. We have learned that reinforcing tantrums causes more tantrums. Inversely, a meltdown can be caused by a myriad of stimuli occurring around my child. We will deal with these according to the suggestions we have received from our therapist. And no, I don’t want your opinion on how you would deal with a child behaving this way.
4. It’s OK for them not to engage with everyone else.
We allow our boys to sit and watch “SpongeBob SquarePants” the entire time we’re there. Right now it’s their thing, and it keeps them engaged in a way only they understand. No, they don’t want to watch the game. Not to mention all the hoopla surrounding watching the game sets them on edge. Someday, I dream they will be interested in football, but today they are not, and I have come to accept that as a possible fact for the rest of my life.
5. Certain foods (like mashed potatoes) taste great with ketchup.
If my son happens to join us at the dinner table, he only eats the mashed potatoes smothered in ketchup. We take our wins where we can get them, and him being at the table is a win. Did I mention the ketchup? Please buy an extra bottle while you’re out shopping, but in case you forget, I will keep my emergency supply in reserves.
6. Pacing is a fact of life and doesn’t hurt anyone.
One of my boys might start to walk around in circles from the kitchen to the living, down the hall and back around the kitchen. This is called stimming, and it’s his way to manage the world around him. It can be soothing for him to do this for up to 30 minutes or more. You may also want to ask us why and when does he does this. I have loads of answers for you, so let’s discuss them over a beverage.
7. Exercise can be a great, calming activity for my boys.
If you have a trampoline in the yard, this could be used as a very good heavy movement tool for the boys to enjoy. My oldest has been known to jump for up to four hours nonstop. He will tolerate a few additional jumpers as long as they don’t interlope on his activity. These kinds of activities can actually calm him down for hours afterward.
8. Headphones and earplugs aren’t signs of rudeness.
My boys don’t take off their headphones the entire time they are there. They listen to lots of things and sometimes nothing at all, but by having the headphones on, they are able to moderate the volume of sound emanating around them. This helps keep them grounded and balanced.
9. We’re not being rude if we leave early.
If we need to leave early or one of us heads back to the hotel with the boys, we’re trying to be considerate of you and also keep an eye out for their wellbeing. They can really only handle so much of the chaos going on around them. Chaos can be defined as people talking in groups with several conversations going on at the same time, kids screaming and playing tag in the backyard and the general festivities that happen when families get together just a few times a year. Don’t try to keep things down on our account. We knew what we were getting into when we came, and we’ll go with it.
10. Don’t judge, just accept. And talk to our kiddos.
Don’t judge us, don’t belittle our parenting choices and don’t give us your opinion of how or what we’re doing with our kids. Don’t parent our kids for us when we’re around. Just accept us and accept we are here with you, and we’ll be excited and happy to come back again.
Do engage with our kiddos, ask kindly worded questions about behaviors you notice with our kids and take steps to understand a little of what our lives are like. There are some great blogs, Facebook pages and books that share a little about what our lives are like.
With this new understanding, you will help us keep autism awareness alive and growing.
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