Written by Alisa Hutton
Some days are hard. Really hard. Sometimes those hard days layer one on top of the other and become hard weeks and then hard months. Eventually you feel like you can’t remember when it didn’t feel hard. The moments when the screaming and the crying don’t seem to stop. You sit in silence knowing you have to be calm and patient and you just wish you could have a small break from it all. Just to feel a little bit of peace but you can’t and you won’t get that break. You wish for nothing more than to understand what is going on for your child so you can help fix it. You question yourself as a parent. What type of parent am I if I can’t fix this? So you do what you know best. You love them and you wait. You wait and you hope you figure it out or it simply stops. You feel guilty because you know it is more difficult for them and you feel selfish that you are thinking about yourself. It is hard.
When you tell people your child has autism they often say “that must be hard”. You have so many responses you want to say in your head. Sometimes you want to cry. Sometimes you want to scream at the top of your lungs how hard it is so someone gets it. You want to feel like on those sometimes hard days you are not alone in it. You want to say it is hard, please help us. We need more support and I am tired, so tired. Sometimes you are just too tired to explain it and you just smile and say it is OK. It is hard.
Isolation. The isolation is brutal. Some days though you wonder if maybe it is necessary because if you are surrounded by people who don’t get it then the isolation is worse. It then becomes loneliness. There is nothing worse than being surrounded by people who don’t get it. Lonely feels horrible. You feel invisible. Sometimes you feel like maybe it is just better to be alone. Maybe you were just meant to spend a lot of time by yourself. You know this probably isn’t true but you think it because you tired. Maybe you are a better parent if your are isolated. You are able to focus your energy where you need to. It is hard.
Worry. Sometimes you wake up gasping for air in the middle of the night with worry. The questions that tap on your subconscious when you should be resting. When you so desperately want to be resting. You are exhausted, you need rest. What will happen to them when you are gone? Are they happy? Who is going to love them if I get sick? My god I can’t get sick. I need to take better care of myself but how, when? Will I have enough money to support their therapies this year? Work. I can’t take any more time off work. God, what if I lose my job? Then what? Will they ever have friends or a job? Where will they live when they are adults? Will I be able to support them or will I have to let that go and allow someone else to take over? Worry. It doesn’t stop. It is hard.
Stress. The stress swallows you. We know what it is doing to our body and it feels like some days there isn’t anything else we can do except pray that our stubbornness to not get sick saves our bodies from falling apart before we are ready. Your chest hurts all the time, you ignore it for the most part and hope that maybe if you take a few minutes it will hurt less. You stop looking in the mirror because seeing how quickly you are aging and how tired you look is just a reminder that you need rest and help. You aren’t going to get either. You joke about your body being a science experiment to see how long you can go at this level. You laugh but you don’t really think it is funny. It scares you because you know it is a matter of time before your stress manifest in to sickness. You can’t get sick. It is hard.
We go to bed with only one thing every night. Hope.
People say it must be hard.