Right after Cristian's diagnosis, I dove head first into a world I had only waded in before. I have learned so much in the time leading up to the diagnosis and the six months after. The resources I have found in other parents, charities, programs and books have really helped us. I am hoping that the next year will bring even more knowledge.
I've compiled a list of 10 things that I've come to realize this year as a parent of an autistic child. It was quite therapeutic writing this because it's difficult to verbalize thoughts and feelings at first. I've learned is that while our children go through sensory overload we parents go through information overload. If we don't write it down or categorize it, it's gone forever. Being part of a support group for a family with an autistic child can be difficult, so I am hoping that this “crash course” will help someone else.
1. Don’t be sorry for us.
We’re not. We feel blessed that we were given the GIFT of awe-tism! There might be days when we are overwhelmed and consumed by everything, but God does not make mistakes. Our dreams may be different for Cristian and we may celebrate different milestones with and for him, but we want the same thing for him that any parent wants for their child. We want him to be happy.
2. Show your support.
Walk (or run) next to me at Dylan’s Run. If you can’t make it, donate towards autism research. Come play bingo with me to support an autism-related charity. Volunteer at events that are meaningful to our family. If you dare, come with us to an IEP meeting or a therapy session to see what happens in the background. This is all very important to us and I can only hope that you’ve got our backs.
3. Don’t put our family in a cookie cutter.
Your cousin’s sister’s uncle’s Godson may have autism but it does not mean that comparisons are appropriate. It may very well be that the only thing they have in common is their diagnosis. We appreciate any and all suggestions that come our way but please know that every child on the spectrum is different. There is no mold a family dealing with autism can be placed in. Just because a certain diet or medication works for one autistic child does not mean it will work for mine. We will continue to do what we think is best for our child regardless of how you feel.
4. Watch out for us.
We can be so focused on our children that we can forget that we were ever anything but a special needs parent. It is really easy for us to lose our identity as an individual or couple. A staggering 80% of marriages dealing with autism end in divorce and we want to be in that 20%. Help us go on dates and remember why we fell in love in the first place. Remind us that we have a partner-in-crime through it all and that we’re not alone.
5. Just listen.
You don’t always have to worry about giving an answer or finding that magic solution. Don’t panic or scramble to find the right words, especially because there might not be any. Sometimes all I need is someone to vent to and unload on. I need to prevent exploding because it’s not healthy and quite messy and difficult to clean off the walls. All you have to do is lend me an ear, nod your head once in a while, offer a shoulder to cry on and provide hugs. I like hugs. They are free and a constant reminder that you care.
6. Don’t get offended.
We love that you think of us and that we receive invitations for playdates, birthday parties and other fun outings. We really do. Please do not be offended if we decline the invitation or leave early. There is so much we have to take into account to make things go as smoothly as possible. Social outings are very nerve-wrecking for both autistic children and their parents. Our biggest concern is for Cristian’s well-being and we want to prevent a sensory overload meltdown. If we arrive early so that he can beat the crowd or if we leave the room for the birthday song, don’t think any less of us. And please still include us because together we can think of something that works for everyone. It really is the thought that counts.
7. Don’t give up on us.
A strong support system is key to a special needs parent’s sanity. If you have an extra five minutes, send me a text, e-mail or voicemail saying “Hi” and asking me how I’m doing. I may not answer right away—but know that I am smiling because you took the time to show you cared. If you want to stroll through the mall or grab a coffee, ask me if I’d like to join you. Nine times out of 10 I will have to say no but the one time I say yes we will have a great time. You will remind me that I am more than my Mommy label and I will be reminded that I have great friends.
8. Share our joys but don’t compare.
I had (keyword being had) a friend with a daughter around Cristian’s age who always had to “one up” my joys. If I told her Cristian could count to five, her daughter could count to 50. If I told her that Cristian told me the sky was blue, her daughter could say it in Spanish, French and Chinese. If I told her that Cristian went potty, her daughter could clean the toilet after using it. Okay, these may be a *bit* of a stretch but you get the idea. All children develop at different paces and adding autism into the mix just makes everything more unpredictable. Your child may be the next Monet or Einstein but Cristian’s milestones and accomplishments are just as wonderful for us. I will share in your joys if you share in mine—but let’s do them at separate times.
9. Don’t judge our parenting.
We’re not perfect parents. There is no instruction manual that magically pops out after the child does. I’ve tried searching for instructions but his particular model doesn’t come with any. We’ve decided to play it by ear and wing it, if you will. All of our decisions are not going to be the best ones. We may give in once in a while because we’re purely and utterly exhausted and I’d rather sit through one more 15-minute episode of “Penguins of Madagascar” than listen to 15 minutes of screaming. I do not want him to fall asleep crying so we will do the entire bedtime routine over because we missed a step. To the outside, it looks like we’re weak parents and do not know how to discipline. We know what we’re doing—for the most part. It may be easy to judge but please don’t. We’re doing the best we can with what we’ve been given.
10. Try to love our child as much as we do.
That just may be impossible but love him through the good and the bad. It’s easy to love him on a good day, when he’s smiling and laughing and hugging you. It’s not as easy when he’s screaming and screeching and hitting. For us, it’s easy to love him every day. Love both of his sides equally because without one you cannot appreciate the other. Also, love him for everything he is—charming, sweet, smart and for everything he isn’t—social, graceful and guarded. There’s a yin and a yang to every person and it is so tempting to separate the two. Don’t. He is a beautiful boy, flaws, diagnoses and all. Show him you know that.