Minion Monday – Alone, autism and the loneliness
Life with autism sucks some days, every little setback sends you into fear of regression.
Every food they decide to eat is a miracle instead the worry if it is health you are just happy they eat.
Each word comes as both a blessing and a reminder, a reminder that your child is not like other kids.
Even when you get them to sleep at night you still sit and worry, will he get up in an hour, two? Will he go back to his elopement phase and run away in the middle of the night? What will happen to him when I can’t be here anymore?
Tell this to a parent who does not have a child with autism. You get the look, you know the one, the “you are freaking crazy” look or the “you have 3 heads” look or even better the “what planet are you from” look.. Never mind trying to explain a stim, or a meltdown or why you can’t go to their kids game. Or how you can’t go to this event or that because it is too close to their therapy appointment. They try but they don’t get it.
I thought being an autism parent meant that only the few people who accepted my son and his autism would be my friend anymore. I understood it was because I had grown away from them. Not a fault in anyone, just that I had so very little time outside of what I needed to do at home, the classes, and therapy and all that goes along with autism. The fear of another regression kept me pushing to help him but fearful to push too far. Not to mention it hurt, it hurt to see the look on my friends faces, the look that said why is he doing that, or he is going to hurt someone or something! It hurt to see their kids, born years after mine. To watch them babble about the latest game, or share a toy or game without a meltdown. To watch them learn and grow by leaps and bounds while my son was bound by his autism.
After a while we just gave up.
There was always so much to do anyway, so many things to deal with, in the end it wasn’t worth the heartache. We had a few friends who accepted us, and family who were amazing made each day better. None of them had a child with autism. While they did there best but make us feel loved and accepted. Some how it was just not enough.
It wasn’t until a year ago, when I started my blog that I realized how massive the online autism community is. How amazing the other mothers were, or even how many of them would even follow my blog much less befriend me.To find someone else who was like me at one point, or someone who has been where I am. People who got it.
When I started this I never thought anyone outside my family and a couple of friends might read it. I had given up hope of finding someone who really got it. Only to find thousands of people who not only got it but needed to hear that we got it too. People who are kind, wonderful, funny and who get it.
People who can say hey it is okay to cry for a bit because you kid can’t do this or that, but tomorrow get up and get on with it because he is awesome and so are you.
I no longer feel alone, I have several thousand people in my life who get it. Who will cry with me, remind me of my blessings and who get it. Some of them would even come looking if I missed a post or a page of the day.
This week is one of those times when I am glad you are all around. It has been a hard week. Really hard. I don’t know if it is the holiday, or the weather but this week I have had to stop myself from crying from missing who I dreamed my son would be and realized the blessing he is. One of my online friends, was talking about the seizures her child endures and how she can’t always be there to catch him when he falls. I reminded her she doesn’t have to be, she just needs to provide a safe place for him to land. When I said this I realized, I am really lucky. Despite Zach’s issues, he talks, he learns, he even ate a new food this week, his health is awesome and his elopement has stopped. I realized that his brothers who are always there for him now, will be there as he grows, that they give him a safe place to land.
When I sat down to write, I wanted to complain about how alone I feel. However, as I started to write I realized, I am not alone any more. I have lots of amazing friends. Friends who will always be there to catch me when I fall. Friends who get the autism, love to laugh along with me, friends who love music, art and my odd sense of funny. I ended my pity party tonight, because I am not alone.
Now, I am going to go start the next season of parenthood, and cry a little and cheer a little and maybe even curse at the t.v. a little.
I will probably chat on Facebook while watching and most important I will know I am not alone.
I have each of you to thank for that.