The ‘Okay’ List

***”The ‘Okay’ List” was written by Prairie Spectrum Parent (and site partner) Kathleen***

In 2013, my son was diagnosed with Global Developmental Delay, Sensory Processing Disorder and Autism Spectrum Disorder. The testing process took almost exactly a year so I had a pretty clear idea as to what was coming, but nothing was able to prepare me for eleven words: “Our tests conclude that your son has an Autism Spectrum Disorder.” Even though they were said in the gentlest way possible, with a look of sympathy on the developmental pediatrician’s face, the words rocked my world and changed my life forever. I cried right there in front of the doctor, who patted my back and assured me that my tears were normal. However, I felt anything but normal.

Let me boil it down for you.

The first thing that hit me was shock. Despite my initial tears, I didn’t really feel much else at first. The day that we received the diagnosis, I drove home, put my son down for his nap and went straight to the almighty Google. I researched everything I could think of relating to ASD and all the while, I thought I was alright. My tears had dried up and I was in an almost clinical mindset: cool and detached. The shock wore off the following week, when we pulled into the parking lot at St.Amant in order to attend our parent information session. Consequently, we were a few minutes late because I had to stay in the car and breathe through a sudden panic attack.

When the shock wore off, I started to feel angry. Even though I was wrong, I was angry at myself because I “just knew” that something I had or hadn’t done was the cause of my son’s ASD. I was angry at judgmental people who glared at my son during his meltdowns or whenever he would do vocal stims. The waitlists for therapy made me furious, because it was obvious that my son needed more help than I could give him but we faced a two year wait to get it.

As hard as the anger and shock were to face, the battle with fear was the biggest one. It’s normal for all parents to worry for their children, but with my son’s ASD, my fears looked something like this: was our therapy of choice the right fit for our son? Would he ever learn to talk? Would he ever go to school? Would he be bullied for being different? Would he become an independent adult and lead a full life? It went on and on like a broken record.

Anger and fear were just the beginning for me. I felt overwhelmed, sad, guilty over anything and everything, and jealous of my friends who had “normal” struggles with their neuro-typical children. My emotions didn’t hit me in any kind of order and I often felt a combination of all of them at once. While it’s completely normal and healthy to experience different emotions, mine sent me on a downward spiral.

I began experiencing the physical effects of constant anxiety. Before ASD entered my life, I would occasionally have trouble sleeping. However, full blown insomnia became something I struggled with most nights. Thoughts of wanting to physically harm myself and my son scared me into action. I spoke with my GP, who gave me a prescription for an antidepressant. Although I was a bit nervous to take any medication, I wanted to try it. I’ve heard of antidepressants working beautifully for some people. Unfortunately, they didn’t work for me. In fact, my suicidal thoughts screamed even louder inside my head. One night, it got so bad that my husband flushed my pills down the toilet and slept on the floor just outside our bedroom door in case I tried to harm myself in the middle of the night. He also called my mother-in-law to stay with my son and I for the next few days while he worked. I felt positively crazy, but the visit from my mother-in-law was when things began to turn around for me.

Over the next few days, she and I talked a lot and in the course of our conversations, she taught me a valuable lesson that helped me get my life back on track. That lesson was two simple words: be selfish. In this context, being selfish meant that if I felt I needed a break, I had to take one and not feel guilty about it. It was her wisdom that helped me develop my ‘Okay List’; a mental list of things that are okay for me to do or not do whenever I feel that I’m becoming overwhelmed by anxiety once again. The  Okay List looks like this:

• It’s okay to be kind to yourself. We all have terrible days, when we’re 100% sure we’ve messed up our kids irrevocably. Don’t beat yourself up! Take a breath, go to bed and try again tomorrow.
• It’s okay to say no. If you feel like you’re at your limit and you’re going to blow up if you take anything else on, say no. Take care of yourself and your immediate family. Everyone else is secondary until you feel better.
• It’s okay to have a hobby that isn’t ASD-related. If you’re like me, you dove right into ASD, associated conditions, terminology, current research, etc. after your child’s diagnosis. It’s great to be an expert in all things relating to your child, but that’s not all that life is about. If you like to crochet, do it. If you’re like me and you’re in love with romance novels, read them! Whatever helps take your mind off ASD momentarily is not only acceptable but encouraged!
• It’s okay to be selfish. Take care of you in whatever way is best and don’t let your brain or another human being tell you that you aren’t worth it or that you don’t need it. Soak in a hot bubble bath, go by yourself to get ice cream or get a pedicure. Whatever floats your boat.
• It’s okay to make plans and look forward to them. Again, life is not all about ASD so don’t live like it is. Make plans with your friend to go see that new movie you’re excited about. Bonus: looking forward to something helps you through the long, tough days that are frequent with ASD life.
• It’s okay to feel whatever you’re feeling. It helped me immensely when I started to allow my emotions to have a few moments and then move past them. At times, I wrote down what I was feeling in a notebook. This helped me to experience whatever emotion was bugging me and then I physically set it aside before moving on with my day.
• It’s okay to ask for help! Be up front and honest about the kind of help you need. If your friend wants to drop by for a visit but you could use a few groceries, ask her to stop by the store on her way to you. You might be surprised by how much people want to be supportive. All it takes is asking for it.

I have two more items on my Okay List that I’m about to share. These two things are, by far, the most important to me. Above all else, please remember:

• It’s okay to reach out to other ASD parents. In other words, find your tribe. Supportive family members who try to understand are amazing, but other parents who are living ASD are, in my opinion, absolutely vital. They understand it all: the night waking, the poop smearing, the meltdowns, the tears, the guilt, the lows and the highs. Find people who understand why you have thirteen economy-sized boxes of Cheerios in your shopping cart. Get to know the parents who are in the trenches with you. I promise you that you’ll be happy you did.
• It’s okay to seek professional help when you need it. Sometimes, talking with friends and family is not quite enough. If you find this is the case, speak to your GP. He or she can refer you to a therapist. There are also an abundance of hotlines and online chat groups if you need help right away.

An ASD diagnosis is an extraordinarily tough pill to swallow. Not only does it affect your child’s life, but, emotionally, it can knock you right down. Hopefully this article will help you to realize that you’re not the only one going through some pretty heavy feelings and that you can get past them. Create your own Okay List, or reference mine if you need some inspiration. If that doesn’t quite work, speak to a professional. Everyone experiences things differently but one thing is for sure: we can get through this together!

-Kathleen