Awhile back I was navigating the aisles of Target, and noticed an adult Special Needs group. I felt that instant familiar mix of happy/sad. My emotions and thoughts took turns rocketing up and down.
I was so happy they had this. This outlet, this community, this outing. Happy I could hear the chaperon telling them they had x amount of dollars which then continued what must have been a previously started discussion on budgeting money. Glad that the mentors talked to them in a regular grown up voice-no talking down or patronizing.
Sad because it starts that thinking- that smooth slope that calls to me and pulls me down to drown. That slide that feels impossible to claw your way up from. I could suddenly only hear the beat of my heart and my thoughts. What else do they do the rest of the week? I felt sad they didn't have jobs. Sad they were in the toy aisle and children's book aisle. Sad picturing my boys as grown ups doing this. Which of course, of course- as you know if you are a parent of a child with significant developmental delays starts the one, worst thought of all...
What will happen to them after I die?
The only question that sometimes keeps me up at night. The question that feels worse than my worse nightmare because I will never ever wake up from it. The question that makes me think that all of us dying together in a plane crash is an amazing dream come true. Because the alternative... The alternative feels like Satan and a panic attack and instant tears that feels like throwing up and burning poison poured on my soul. I don't even know where they are and what they are doing in this awful future. They are in a state institution and they are being abused and they don't know what in the hell is going on and why Michael and I left them. And Greyson has no Pop Chips and hot dogs and Parker has no one to snuggle with in the morning and no one to speckle his entire face with kisses twenty million times a day. And then they die and no one goes to their funeral.
Yes, those thoughts. If we spent HALF the time coming up with a plan INSTEAD of worrying I think we would be so much better off. Let's come up with a plan instead of just sharing our fears. What do you say? We must be the change.
As I was checking out part of the group was at the concession stand. One gentleman in the group was buying a drink. I watched him earnestly and with significant effort count his money out on the counter. I could see him using the skills that were taught to him that still seemed foreign. Thank you, he said, with the briefest moment of exhausting eye contact. I was so proud of this young man, and I was fascinated. He turned around to sit at a table with his purchase and I noticed it. My high instantly fell. His fly was down. I was crushed. Should I tell him? Despite the coursing of heavy emotions I knew that wasn't appropriate. Should I tell one of the chaperones? He looked so happy. I was mad at the chaperones. Why didn't they notice that like a mother would? Why did they let this happen? I left the store and got into my car and started to cry.
The way I was crying was too harsh of a reaction to simply be about a man's fly being down so I worked to detangle myself from the string of feelings that led me to here. Suddenly a beautiful and needed voice of reason stepped in. Chrissy- that man - the one who paid for his drink all by himself and remembered to say thank you and use eye contact- he was happy. Yes, he was not only happy- he was proud. There was no mistaking either one of those things. He glowed.
And I wondered- Who am I to feel sorry for someone who is happy? What I was feeling wasn't sympathy or empathy. Not in their appropriate vehicles- it was more like - I hate to say - pity. Because pity carries this air of superiority. Like I am together enough to know that having your jeans unzipped in public is not acceptable- and this poor man doesn't. He didn't remember to zip up.
I called my best friend Annie- and started to cry while I recanted my story. Yelling at myself while I was at it. "I have no right to feel sorry for this man. I've totally forgotten to zip up my fly. We are the same- human. That doesn't warrant feeling sorry for him. Shame on ME. What if people feel sorry for me? They aren't allowed to feel sorry for me. They aren't allowed to assume that this life I live is a shame or something you can tsk tsk. I have no right to label kid's books or toys as age inappropriate. I have no right to deem any of their happy as inappropriate or tsk tsk worthy. It's insulting."
And I've had comments made to me that felt awful. They felt like pity. They felt insulting. Most recently a woman who knew the boys had autism approached me. She said- in that slower, near whispering voice- My grandson has autism- I understand how hard you have to work, while she shook her head back and forth. Something about what she said (IN FRONT OF GREYSON) made me want to punch her. I felt an instant rage I didn't fully understand. I don't work hard, I retorted. HE is the one that works hard- and he's amazing. I'm just the mom- cheering him on and taking him where he needs to be. HE works hard.
Am I sorry that my boys have autism? Absolutely. I wish there was a magic wand that could take it away. But am I sorry that I am their mom and that God gave us this story? ABSOLUTELY NOT. Never ever ever. God gives us all roles in life. He gives us skills to do the best we can with the story we are living. It doesn't always feel that way- but whatever it is you need, they are in you already. You have what it takes. And if you don't have what you need- you have the skills you need to change. I've never met anyone who didn't. I've only met people who didn't believe they did. God gives us gifts that can easily be mistaken as challenges and hard times.
I am so blessed. So grateful. So lucky. So proud of the story we were given.
And I've also had people make comments that were compassionate and felt like understanding- not pity. Comments that spoke to the struggles my boys sometimes have to endure- but struggles that do not define them. It's so hard to describe what makes them different. I read somewhere that pity comes from a place of superiority, and sympathy comes from a place of understanding and appreciation. A place in our core that reminds us that we are all human, we are all the same.
I thought about how much my thoughts have changed since knowing and loving Greyson and Parker. I just didn't know or understand the world in the way I do now. Most obstacles in our lives lead us into accidentally finding ourselves. Our compassionate, happy true selves. I realize I have no right to pity someone who is happy. No right to judge their happy. No right to do a single thing- except focus on the good in my life and grow my own happy.
Hey Crissy. I understand how you feel. But know this. YOU ALSO HAVE TO WORK HARD. Having two children with Autism is a bitch. I am there. I know. Please stop discrediting what you do is hard work. BECAUSE IT IS. Of course our boys work harder then any other kid. We have to work harder than other moms. You are a MOM with SUPER powers!!! I think about that every time one of my sons is hitting me or screaming in my ear so loud I am pretty sure I will suffer hearing loss. Sorry, I am having one of those days. You are an amazing MOM! CLAIM IT. YOU ARE. Look at what you have done standing up to the system and saying NO this is not good enough for my kid. It takes a lot to take on the experts and trust your gut. You have. Thank you for sharing what most of us would not admit. You are strong.ReplyDelete
This post was amazing!!!! Your boys are just darling!!!! my favorite part was this "pity comes from a place of superiority, and sympathy comes from a place of understanding and appreciation. A place in our core that reminds us that we are all human, we are all the same"....soooo true!!!ReplyDelete
All good mothers work hard. And all good mothers with children with super powers work super hard, just like their kids do. And I bet that all good mothers - super powered children or not, probably tend to downplay their role in favour of their children. And all good mothers are allowed to have an 'off' day. Here's hoping that tomorrow the sun shines brighter, and the giggles resound louder, and the challenges are a little more successful and a little less difficult. I'm glad you are you Chrissy!!ReplyDelete
It seems as though you are a wonder mother. There is no need to worry, God has a plan. And I have been working with adults with disabilities for a few years now. I worked in a day program where my guys worked to earn money and gain independence in activities of daily living. Now I work in a group home while going to school. I have to say, my guys love each other and love their house. We have wonderful staff and that house has so much love. You are a wonderful mother, but you are still allowed to have rough days. But remember there is always tomorrow. And have faith that your sons will live long, happy lives.ReplyDelete
"I just didn't know or understand the world in the way I do now."
My world has been cracked wide open in the best possible way by my son. I've had such similar experiences and emotions as those you write about. I've enjoyed reading along. Thank you for sharing.
(and the Grey's haircut--adorable! the doggie watching Parker eat an apple make me giggle--our Boston loves apples and that one wouldn't have stood a chance.)
May I point out something that I think you may have missed at Target? Something hugely profound? Yes, the man's fly was down. We all do that sometimes. But my guess is he didn't care, not even a little. That's one of the most beautiful things about people like that gentleman or your Greyson and Parker or my Moise and Kruz. They don't care about the little things, They don't conform to the rules of society. They can walk around with their fly down, or laugh hysterically at totally inappropriate times or flap in public and not care one bit about what anyone thinks. Sometimes I wish I was more like them. I saw the documentary "Drop Box" last week and Mr Lee beautifully described our children when he said that they "educate society." We have much to learn from them about the really important things.ReplyDelete
Really well worded. Totally agree. They are truly living life as God has planned.Delete
Amen and amen. Well said sister.ReplyDelete
Hi Friend :) That is a pretty vivid and scary dream you have about not being able to help your boys. Just remember, as much as you love those boys, God loves them just as much. He will never fail them. Trust that, heaven forbid, there is a time when you cannot be there, He has them. They are His children, too.ReplyDelete
Love & peace to you, sweet Momma xoxoxoxoxox Miracle
I have been following you for a while and have finally gotten up the courage to comment. I have a 1 year old grandson that was born with Cornelia de Lange Syndrome (CdLS). He was born without hands, he had 2 holes in his heart and a leaky valve. We don't know how affected he will be later (physically and mentally) but we take it one day at a time. Since he was released from the hospital at 7 days old, the holes in his heart closed (the dr said they wouldn't) and his leaky valve stopped leaking. He had profound hearing loss and could barely see. He has since had tubes put in his ears and his eyesight has improved. He will always be tiny, he turned 1 on March 4, 2015 and just barely fits into 6 month old clothing. My daughter-in-law takes him to PT and OT 3 times a week and a school teacher comes to her house 1 time a week to work with Austin. This little boy is amazing at what he can do. If you ever get a chance to look on facebook, we have a page dedicated to him called Awesome Austin. We love this life God has chosen for us and Austin is the greatest gift ever. We get stares like crazy while out at the stores but I put the smile on my face and just love on my little grandson like no one is around. God bless you and your little ones.ReplyDelete