It’s the mantra of Autism advocates world-wide. You can find it on t-shirts, stickers, and websites. It’s a quote from an Autism self-advocate, Temple Grandin. I’m sure you’ve heard of her. If you haven’t, go look her up. There’s a movie about her that I can almost guarantee will make you cry, especially if you love someone with Autism.
This post has been floating around in my head over the past week, and at first its focus was going to be the things that are harder for families with Autism. But that just felt too negative. Too self-pitying. So instead, I wanted to point out some things that are different for us than with other families, thanks to Autism. Whether “good” or “bad”, these are our experiences. And I share them not so you will feel sorry for us, but to educate and shed some light on aspects of our life that may not be quite so obvious.
ASD kids go through a lot of tests. Psychological observations, speech/language evaluations, blood tests, MRIs, EEGs, and more. Currently, we’re waiting on the results from a blood test, just recently received results from an MRI, and we have an appointment for an EEG in a couple of weeks. Thanks to this testing, ASD parents soon learn intake procedures, know the terminology to explain their child’s speech delays, understand the distinctions of various motor skills, and can fill out a new patient registration in their sleep. Everyone wants to figure out what’s going on. And that’s a good thing! We’ve been so blessed by the doctors we’ve encountered, and putting pieces of Anna’s puzzle together has been key in knowing how to help her at home. But testing has its downsides. It can be traumatic for your child. It can also be awkward or just plain annoying for the parent. For the MRI, I had to crawl up into the machine and simultaneously hold Anna’s hands away from her face (not easy when she is addicted to sucking her thumb!), and hold her head still, while not getting in the way of the imaging. For her EEG, we’ll have to wake her up at 2am and keep her awake until her appointment at 10am, and possibly longer depending on the wait, and how long they want her awake during the EEG. For her blood draw, I had to hold her arm and shoulder still while one nurse held her arm down and a second nurse drew the blood. But having those answers will help us to help her, so it’s worth it.
2. Birthday Parties
Anna is sensory-seeking, which means she loves loud noises, new faces, and lots of activity. But she is also gluten-free (actually has nothing to do with her Autism, but can be common with many ASD kids), and doesn’t understand the concept of “this is another person’s food”. So even if the host has kindly provided gluten-free snacks and cake for her, there is still the more-than-likely possibility that the other children will leave their food on the edge of the table, where she can–like lightening–grab fistfuls of glutinous cake and shove it in her face before I even notice she’s near the table. She’s a sneaky one. And quick. And then of course there’s the decorations she pulls down, the party favors and toys she “explores” with her mouth, and the other children that she may decide to lick, bite, pat forcefully, or grab. She loves hair, and she has been known to pull it on other kids. It sounds like typical concerns for a 12-18 month old, but she is 3. And of course there are the semi-awkward moments of someone trying to talk to her–asking her questions and such–and her just staring at them with a smile, and they look at me somewhat questioningly when I answer for her. “Her name is Anna… She’s three…” I’ve now overcome the urge to explain to everyone I meet that she has Autism. It’s not really any of their business. But I used to make this excuse for her every time we encountered someone who wanted to talk with her and she did not respond. They can wonder or ask if they like, but it’s exhausting to explain to everyone we meet that she is non-verbal, that she doesn’t even respond to her name, and that she has poor motor skills.
3. Going Absolutely Anywhere
Getting out the door with three kids is a challenge. But when a three year old doesn’t understand safety issues and is prone to sudden sobbing meltdowns, it makes it much more complicated. I feel so victorious when we get out the door on time and without complication. It’s such a wonderful feeling! And when we arrive somewhere that is contained enough to keep her safe without me having to hold her hand the entire time? Oh that is pure bliss! But sometimes even just taking a walk, running a quick errand, or stopping by the library, can be more trouble than it’s worth. I must praise my oldest, though. She can be so incredibly helpful in keeping her sister from wandering off in the parking lot while I open the van, or in helping me keep an eye on her in a play area. I’m so grateful for Leah’s mothering instincts! Now, if I could just get Damien to like his carrier a little bit more…
I would like to point out that I have some truly amazing friends. One friend also has a special needs child, so she totally understands our challenges. Another friend had a foster child with Autism, so she also “gets it”. And yet another friend has a degree in child development. You’re seeing the trend, I’m sure. Without even intending to, and before we knew about Anna’s Autism, I was making friends who would be understanding and supportive. I’ve heard of ASD parents losing friends after their child’s diagnosis. Life got too busy with therapies, other kids weren’t keen on having a playdate with the ASD child, or the other parents just didn’t want to bother making accommodations. But my friends are amazing. Even though playdates are harder to come by–though our schedules don’t always mesh, and sometimes kids have meltdowns and we need a day at home–the times we do get together, the time is sweet and such a relief! Being able to allow my kids to play without explanation or apology–it’s wonderful! It’s still different, sure. My 3 year old has no interest in playing with other kids, and sometimes we have to leave early if she’s overwhelmed. But the love and acceptance from my friends and their children is beautiful, and greatly appreciated.
When you have a child with a severe language delay (including a complete absence of spoken language, such as Anna has), every grunt, every little sound, is so much more exciting. With Leah, she met most of her milestones early, or at the very least, right-on-time. But with Anna, most were delayed, and some she still has not met. So when she does make a new sound, we’re thrilled. We’re excited to see her climbing on the table, pestering her sister, and trying to show affection to her brother. It’s absolutely exhilarating when she meets a new milestone, as meager as it may seem. And you learn to appreciate the little things. Her bending down to sit on the ground may be annoying when you’re trying to walk somewhere, but knowing that she didn’t do that six months ago, hardly ever bending her knees, is exciting. And her taking the initiative to walk up a step without prompting or supporting? Absolutely incredible. When you have a child with special needs, you learn to appreciate and see the value in each and every seemingly minor milestone.
Well, that’s about all I have for now. I hope that some of you were inspired to be aware of the needs of children with Autism, or that perhaps you thought of a new way to support a family with special needs. Or maybe you simply thought it was interesting to note the differences between an ASD family and a typical family. For us, this has become our everyday life. It has its challenges, set-backs, and annoyances; but it’s our life now, and we are so blessed by it.