As the mother of a bright and beautiful nine year old daughter with high-functioning autism and epilepsy, there are days when the world seems so bleak. When I am so tired because I was up with her all night. When we have been accosted in the park AGAIN by some stranger that thinks she knows how to raise my child better than I do…and feels she actually has the right to tell me so. When I cannot find the ‘right’ food or cannot stop the noise of the tree cutters and I feel like I am failing her. When the ‘experts’ who failed to diagnose her, failed to protect her from bullying and failed to provide us the help we need to give her the best future still seem to think they can ‘judge’ me for doing what I know is best for my child. Days when I just break down and cry, when I wish that there was someone there to hold me and tell me that everything would be all right in the end. Yesterday was NOT one of those days. Yesterday was the kind of day that I pray for. Yesterday was as good as it gets…in my world anyway.
PanKwake loves Disney. She loves Disney on Ice. She especially loves Frozen. Last night we had virtually front row seats for…Disney Frozen on Ice. It don’t get much better than that, folks!
Except as much as I want to give her all those things in life, I know that they will always present challenges all their own. PanKwake does not like the Tube. In fact, our most common form of travel is walking. Because of the lights, the loud sounds and especially all those Londoners pushing and shoving. Worst yet…how judgmental and just plain rude that people can be. Getting to things like this is a major hurdle.
Yesterday, we were blessed that we had three tickets (not the great ones we had, but the backup ones that her dad had bought earlier). We invited PanKwake’s carer and her two girls. So here these two Moms with three little nine year old girls, PanKwake in her MacLaren Major buggy even, getting on the Tube at 4 o’clock, afternoon rush hour. I was dreading it.
PanKwake found a seat and she began to sing, ‘Let It Go.’ Now, she like her Mom does everything loud. I cringed and prepared myself for some comment from this business man standing next to her, whom I am sure had a hard day at the office. Instead, he starts to smile. And when she finished, he actually hooted. Thank you to that angel unaware. You have no idea what that meant to me…that just this once I did not have to apologize or explain for my child being…a child.
Then we get there and everyone was so wonderful and helpful. From the people on the door who directed us where to go to the vendors who waited patiently for PanKwake to pick her souvenir. Thank you all.
Biggest thanks of all…the family who sat next to us, who did their best to engage her in conversation. Who endured her fidgeting. And to the young family behind us for bearing with us when she just HAD to stand up to sing her favorite songs. Not once did they ask me to make her sit down. And to the usher who bore with us when she had to dance in the aisle…thank you too.
Lately, PanKwake’s days and nights have been a bit mixed up. And even though she took a couple of hour nap before we went, by the end she was exhausted. Of course the big finale was her Frozen. And I am of two minds. On one hand, I know that she did not have the energy to sing her heart out like she normally does…and the videos show that. But on the other, she also did not get herself too worked up.
After the performance, we collected the buggy. Found our friends. Because I knew that it would be late and we would ALL be tired, I had pre-booked a cab. He arrived just on time…a couple of minutes early even. Thank you Express Minicabs. PanKwake fell asleep in her buggy and slept all the way home. Then went back to sleep on the couch…with NO problem.
Best of all, on the way home, my carer and I talked about autism with her two beautiful daughters. We talked about what it feels like to be PanKwake. To live in a world where the lights are too bright. Sirens hurt your ears. The label in your shirt feels like sand paper. And everything is just kind of smelly. We talked about how they could help her…and other children in their schools. We talked about why we choose to home educate her. And I could see their little minds absorbing it all. The cab driver was listening too.
Two things made yesterday the best…1) PanKwake did it! No meltdowns! She was absolutely as good at managing her behaviors as she could be. Of course, she was still and always will be autistic. She cannot sit there quietly and be still. But she did her best…and that is all I could hope for. And 2) even more important to me…everyone else did their best too. They showed compassion and understanding. They showed what I long for most….ACCEPTANCE.
Of course, I know that not all days will be like yesterday. PanKwake woke screaming this morning because we were out of chocolate milk. But we managed. And I know too that there will always be ignorant people. I re-tweeted something the other day that says it so well, “I could no more spank the autism out of my child than I could slap the ignorance out of you.”
But yesterday gave me a glimpse of the world as it can be…and I am left humming one of my favorite Disney Songs…
We’re not sayin’ you can change him,
‘Cause people don’t really change.
We’re only saying that love’s a force
That’s powerful and strange.
People make bad choices if they’re mad,
Or scared, or stressed.
Throw a little love their way.
And you’ll bring out their best.
True love brings out their best!
Everyone’s a bit of a fixer-upper,
That’s what it’s all about!
Father! Sister! Brother!
We need each other to raise
Us up and round us out.
Everyone’s a bit of a fixer-upper,
But when push comes to shove.
The only fixer-upper fixer
That can fix up a fixer-upper is
Thank you to all of the angels unawares that made yesterday one of the best days ever. Goddess bless you all, you gave me hope that love and acceptance will one day be the rule in the world and the exception.