When Casey was first diagnosed with autism, I set out to be the perfect special needs mom. I worked really hard to know all of the information, read all of the books, all while trying to do the regular mom stuff- cleaning, laundry, meals, etc. I burnt out hard. I flung myself into a depression that wasn’t easy to dig out of. But when I finally got out of it what did I do? The same thing. This cycle repeated itself until I found myself in a therapist’s office dealing with chronic pain and debilitating anxiety and depression. I had to change. Looking back, I see now what I was doing that wasn’t working, and found things that help. I was fortunate to understand a lot of these things by the time Abby was born, but there’s still a million more things I could do to save my sanity. These are the first ten that came to me.
1. Learn how to say ‘no’.
There are going to be people that suck the life out of you. You have enough on your plate, if these aren’t reciprocal friendships or endeavors, say ‘no’ whenever you genuinely don’t want to do something or simply can’t.
2. Cut out all of the fluff.
Before Casey was diagnosed, I was seriously concerned about not having enough cute nicknacks in my house. It seems SO crazy to me now. This has been a lesson to me on two fronts: 1. Cut out the literal fluff- anything ‘fluffy’ (nicknacks) in your house that isn’t necessary. Or, at least, don’t buy any more. It’s one more thing to clean. It’s one more thing to get broken. I have a veritable graveyard of Willowtree Angels that I HAD to have. Unless it’s something you do as a hobby, (see below) this sort of thing just clutters up your space and your brain. Which leads me to the second lesson: Cut out the figurative fluff. We live in a Pinterest world where there’s always some way to take an ordinary event and make it extra stressful. Children’s birthday parties are less party now and more extravagant events. Your kid isn’t going to remember the fluff, at least mine don’t. They will see pictures of them blowing out candles on ANY cake- store bought or one with baked in tears.
3. You’ll lose friends. Good riddance.
Someone actually did tell me that I’d lose friends after Casey was diagnosed. I didn’t believe her. I wish I had. And I wish I could have employed the second part of this point too. Disability is a fantastic friendship sifter. You’ll find out who your true friends are because they’ll stick around. They won’t expect you to be fun all of the time. They’ll listen. They’ll come over and sit with your kids so you can get a nap. Those who don’t stick around you are better off without. It sucks to learn that friendships aren’t what you thought they were; but it’s sure nice to know before you devote any of your precious time to someone who isn’t worth it.
4. Don’t overload on disability-specific information.
We are are fortunate to live in a time where information is readily available at our fingertips. After each of my kids were diagnosed, I binged on autism and Down syndrome information. I only read books, blogs, websites and forums about the two. The problem with this is that a lot of the information out there tends to point out the negative aspects of disability. There are things you can’t learn from books- you have to live it. I finally put down my Down syndrome books when Abby was a couple of months old and just enjoyed my baby. I’m not saying to not do your homework, just make sure it’s not ALL your doing. Read funny stuff. Read stupid crap. Mix it up from time to time.
5. Listen to those who have gone before you.
Like I said, there is only so much you can learn from books. Life experience is the best teacher. Parents of older children or adults with disabilities know more than you do. They just do. Will they have done things or have the same perspective on your kids as you do? Maybe not. Listen regardless. I’ve learned more from my friends within the special needs community than I have from any book.
6. Don’t stop being yourself.
This is a lesson for any parent, but especially for parents with children with special needs. Don’t try to fit yourself into the mold of what you think a special need parent should be. I used to think that I had to be brave and strong and happy all of the time. I had to convey to the world how supremely grateful I was for the challenges we had. Bullcrap. That is a mold I cannot and will not force myself into any longer. I like my music loud, I swear, I complain and I make a thousand mistakes a day. It’s not that I’ve stopped trying to be better, no, I just want to be a better version of ME.
7. Find a way to relieve stress.
I should say a “healthy” way to relieve stress. I’ve heard that heroin is a great stress reliever…but you know, it’s heroin. My therapist back when I was having chronic pain forced me to find something that wasn’t autism, parenting, or housekeeping related to do that I enjoyed. He even went as far as forcing me to show him what I had learned to do. I craft. I make crappy jewelry and cards. I love it though. I have friends that exercise, some that knit and others that mercilessly mock me on Facebook. All of these things give their brains a break from the daily battles and give them something to do that is rewarding to them.
8. Take any break you can get.
I used to put my kids to bed and then think I had to get to work on my house, blog, reading, etc. I don’t do that anymore unless I want to. I use the time to relax, catch up with friends, or do something fun. If you find yourself child free, remind yourself to use that time to recharge. You might have to get a babysitter to have child free time. DO IT. I get how hard it is to find a good babysitter. I have an autistic son and a daughter who is medically complicated. It’s necessary. It’s expensive. It’s necessary. Find a way in your budget to have a night free at least every two weeks. If it means giving up eating out, data plans, etc, DO IT. It’s soooo important to be able to get a break. It’s vital to your relationship with your spouse or significant other, and it’s vital to your mental health. Even if you don’t go on a planned date, get a freaking babysitter so you can nap. I once paid a babysitter to watch my four kids so I could sleep in my car. I kid you not.
You’re going to deal with more stress than the average person. If you’ve tried everything else and just can’t keep your head above water, get some help. You might just need someone to talk to. Do it. I’ve found that just talking to someone isn’t enough. I needed help to defray the daily emotional cost of having two kids with disabilities. On my best days, I still need help. Find a doctor that will work with you to find the best medication. I’ve just spent the last six months trying to find a good medicine to help with my new fun anxiety problems. I’ve finally found one that gets me back to normal, and I use therapy to help me stay there. There is nothing wrong with needing medicine or therapy. Nothing.
10. Enjoy it.
You are your kids’ parent first. Advocate, teacher, and therapist are important roles, but they aren’t what you ARE. Enjoy it. As I’ve typed this out, Abby crawled on the edge of the couch by me and then dove head first into my lap. She giggled as she wriggled herself around so her feet were on my face. I ADORE her. I love my time with her when we’re not doing anything else but existing in our roles as mother and daughter. I love having Casey wake me up as he tries to stealthily crawl into my room to sneak into the spot between me and his dad. I love what all of my kids teach me, and though I complain a lot about the minutia of motherhood, I absolutely love being my kids’ mother.