Sometimes there are good days. Sometimes there are days that can go up and down. Sometimes there are bad days.
It’s hard when she has self-regulating issues. I provide a means to get her back on track, but if she doesn’t or refuse, we have to step away from a situation. Being in the car has been a dreadful experience. She doesn’t stay buckled. Thank goodness for childproof locks! She throws whatever is within reach. She will undress and throw items while I am driving. Having something to keep her occupied like a leap pad can go either way. Either she’s completely engrossed and has a break down when the battery dies, or she flips out and throws the leappad.
Worst of all is grocery shopping. I make multiple attempts to bring her to the bathroom and keep it consistent. That is the one thing that she will often fake me out for. She’ll use the excuse that she needs to go. We leave our carriage, go into the restroom. She asks me for more time. She doesn’t go or only goes a tiny bit. We clean up, dress, wash hands, etc. Quite often I find my cart of food is gone as someone assumes I left it and decided to put all of the groceries back which causes further frustration. We go to the bathroom first when we arrive before we do our shopping and sometimes in the middle and at the end if we are with other people so we can take turns watching the carts. It’s quite different when we’re alone and the bathroom breaks are only the beginning.
When I am by myself I take her straight to the car if she acts out when shopping. She calms down. We go back in and start shopping again as our cart has been put back. She freaks out. I leave the cart and groceries and take her back to the car. Rinse and repeat until I am asked by store personnel to please stop leaving groceries in my cart and taking off unless I actually intend to buy something. They would request that I leave the store and maybe come back when I can better handle my child or better yet, when she is not with me. How do you explain “I’m training my daughter who has autism and you’re not helping”? And even when I have said it, I get the looks of disbelief. She doesn’t look autistic, because clearly autism can be easily distinguished by the way a person looks.
They don’t understand the meltdowns. They don’t understand why or when I melt down and I yell, because it’s been happening for days or I am beyond frustrated myself for not being able to continue to remain calm and collected 24/7. They don’t see that I take the time to apologize to my daughter for my own behavior if I lose my cool, because I want her to know that I’m not perfect and I am responsible for my actions. I still struggle just like her. I talk to her and tell her why I was wrong and why it’s important that we talk. Even if we need time to cool down, it’s good for us to come together and find mutual ground. I know it’s not easy for her and I don’t expect or want to force her to be normal.
People don’t see how long I go being incredibly patient and calm where most others would have flew off the handle with their own children who are considered normal developers. They also don’t see that I feel like crap about it. That I feel like somehow I am supposed to do everything a million times better because she is autistic. That I am supposed to have the patience of a saint. I don’t want that kind of pedestal.
I just want to see my daughter smile. I want her to know that I love her and I support her. I want to go down the slide with her because she wants me to join in the fun. I want her to understand the importance of things like shopping, driving, cleaning up after yourself, and taking responsibility for your own actions… Because I hope she has the ability to live her life and be self-sufficient, or at the very least, be able to contend with the likes of society. If she can’t, that’s fine too. But I want to do all that I can as her mother, to give her every opportunity to practice, and try to become comfortable with these things.
It was never the diagnosis that freaked me out or scared me. It was wondering about the world’s acceptance of who she is as a person, and who she will grow to be, and needing to know that I did all that I could to help her survive the brash uncertainty that lies outside the walls of our home. That is what causes me to lose my cool. That is why I shed my tears. I just don’t know at this point.
I personally struggled with the acceptance of my peers, and I still struggle with accepting myself. I’m trying to work on that. It’s never too late. It just takes time and it’s never easy, but I want to be an example in her life and show her that there are always struggles and imperfections. I want her to know that while I don’t always feel like I’m a perfect mom, I can at least tell with all of my being that I know I have the perfect daughter.
The Stars that Fall 