Last night I snuck out of my house on a Sunday night, left the kids to my husband, and had a fun and civilized meal with several of my autism mommy friends whom I’ve known for years.
I know, don’t hate me. It was bliss.
We haven’t had the opportunity to do this in over a year, although we all keep in touch with one another through Facebook or in person. One of these amazing women will have her doctorate in a few months. Another has been an advocate for her son and other autistic people for decades. Yet another runs a bike camp for kids with autism with a phenomenal success rate of independence. All of us save one have two autistic kids each (we are very good at making people on the spectrum apparently). We are all coping in our various ways, optimistic yet realistic about our children’s futures.
We are also all very tired.
For two hours we talked about autism and (amazingly!) other things, just reveling in being with people who “get it,” and not having to fulfill a single mand for a while (my autism peeps get that one). It was a glorious evening despite the weather, and we all vowed to not let so much time go by before the next one.
I know that it is integral to my sanity to have these women in my life, and I do not exaggerate (not even a little).
I’m writing about this today because it is (still!) Autism Awareness Month, and my focus this year is on caretakers remembering they need to care for themselves too. Something I feel that is essential in surviving this autism gig is making friends with other parents of autistic children, and going one step further- making sure you connect with someone whose child has the same level of autism as yours. I have friends whose children are on the same end of the spectrum as my high-functioning child, and our conversations are necessary and yet bear absolutely no resemblance to the ones I have with my friends whose children reside on the more severe end of the spectrum. I’ve found I need both perspectives to glean advice, vent, and have a conversation with someone who comprehends the long-term ramifications and the logistics of what I’m discussing regarding each of my sons.
Plus it is exceptionally fun to have at least a couple of people in my life I don’t have to explain every single detail to. It leaves more time to eat and drink wine.
Whether you’re just starting out on this autism path with your child or you’ve been in the trenches for a decade or more, try to make those connections. One of my sons is still friends with a boy we met in pre-school (I am tenacious in my relationship-building). Back in the day when my kids were little I often signed them up for events with our local autism organization, and I met a number of parents there. One I met through a contact who thought she’d be a good person to speak to regarding our school district, and although I can’t remember who set us up I am forever grateful we connected. With my more high-functioning kid I made friends through volunteering at school and in cub scouts. Sometimes a special education PTA meeting is a wonderful place to forge those bonds- even if your town doesn’t have one the one a few towns over might. My kids’ hairdresser wouldn’t let me leave the shop one day until I cold-called a woman who also had autistic kids (trust me, major eye rolling ensued on my part) because she insisted we had to become friends, and she was right.
I even inappropriately befriended all of my son’s early intervention therapists. Hell, they were always at my house anyway.
It will take time (which I know you don’t have) to build these relationships, but I cannot stress enough how integral they are in both helping your child and helping you. No matter what stage your child is in you need a sounding board, someone who can help you make connections to assist your child, and/or hopefully someone who just knows how to listen, won’t make suggestions, and just lets you vent.
Sometimes having the latter is imperative before you can even attempt the former.
If you’re just starting out on this autism journey I know you’re probably scared, overwhelmed, and of course, more than a bit tired. Try to reach out if you can and make friends. It will help alleviate your fears, reduce your stress, and benefit not only your child but you too in the end.
Plus, it may actually end up being fun, and I’m guessing you could use a little fun right about now.
Find that person who’s a good fit for you and reach out. If that doesn’t work, try another. Pretend it’s high school (God forbid!) and you’ve got to just keep going until you find your niche.
It will be worth it, I promise.
Don’t give up.
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