September 7, 2013
I did not know Kelli, nor did I follow her blog closely. I make no attempt to defend an indefensible act and I certainly won't give any of my blog's space to those who do. She has been arrested and is in the hands of the justice system now. Last I heard, Issy was still unconscious and is likely to have brain damage.
There is a Stapleton dad and other Stapleton kids who are left to deal with all of this. It is nothing short of a tragedy. My heart breaks for Issy, for her family, and yes, even for Kelli Stapleton who has done the one thing a mother is never supposed to do: harm her child.
Some of what I'm reading suggests that there are only two camps: those who condemn Kelli Stapleton and those who defend her. This is not true. As intelligent, feeling, human beings, most of the people I know are shocked and saddened. They know this was a horrific act and make no excuses, but are having trouble reconciling the act with the Kelli they knew. They wonder what could have brought her to such a desperate point. And most importantly, what can we do to keep it from happening again?
My son Moe is only six. He barely weighs 40 pounds. But he is strong. He scratches and bites. He once walked up to Jelly while she was sitting at a table, grabbed her ponytail, and threw her to the ground. It was scary. The truth is, he is a difficult child to parent. And while it is my job to do so, while I am learning to parent him with love and acceptance and understanding, I am only human. It is hard. There is no shame in admitting that.
Moe is with me 24 hours a day because we do not have an appropriate schooling option for him. There are days when the attacks are relentless. When every diaper change, every buckling in and out of the car seat, every single interaction comes with aggression. My heart races. I spend entire afternoons running interference between Moe and Jelly and the dog to keep them all safe. Nobody enjoys that. Days are coupled with serious lack of sleep. In those times, I do not feel like myself. My patience wears dangerously thin.
In those times, I can't help but think about what happens when Moe is 12. Or 20. How will I keep Jelly safe then? What happens when he's bigger than me? It is an honest question.
I hope Moe and I will continue to learn together what he needs to avoid this aggression. I hope that with better communication skills and more maturity, Moe will be able to manage his frustration. But when I watch videos of fourteen year old Issy, pulling her mother's hair and attacking therapists, I see Moe. I see him in the way she moves. I also recognize Kelli's pain, both physical and emotional. I don't defend her final actions. But her life before that point? Looks a lot like mine.
We say "get help." But there simply aren't a lot of options. Let's get to the nitty gritty. Yes, in an emergency there is 911. But the long term outlook is tough to think about. It's not like I can just check Moe into a residential facility with 24 hour 1:1 care, where I know he will be safe and happy. These places don't exist in great numbers, and the ones that do have waiting lists of several years - assuming one could even afford it. And it makes me incredibly sad to think of Moe not being at home. Respite options are there, but we're talking a few hours at a time. At the end of the day, it is me and Jeff and Moe.
And sometimes that feels overwhelming. Frustrating. Scary. Desperate.
The Stanford Prison experiment studies, Stanley Milgram's obedience to authority experiment and others show that we as humans can be pushed to do things under stressful conditions that we wouldn't have thought ourselves otherwise capable of doing. It isn't that hard to push people to that level. And make no mistake, raising an aggressive, autistic child is stressful. It is not the child's fault. Issy did not deserve to be hurt. But the reality is many parents are under extreme stress.
Some say that the only legitimate reaction is to cry "monster!" and refuse to discuss any potential solutions to the seemingly growing (or maybe just more visible) problem of caregiver stress. To those who have suffered abuse, it seems unfeeling that we would give the abuser a second thought. I wish we could brush them off as monsters. I wish it were enough to say "stop killing kids." It isn't.
It isn't enough to hate and vilify. This keeps happening. Something has to change. We can simultaneously have empathy and say that Kelli Stapleton took the unequivocally wrong path. How can we change the outcome for next time? We can't just say "get help" and not provide that help.
And we certainly don't need to add to the conversation of hate. It gets us nowhere to make claims that Kelli's blog was just a cover for some master plan to murder her daughter. It gets us nowhere to make a petition to get this filed as a hate crime. It doesn't help Issy or her family. It doesn't help any other child or adult who might be in harm's way.
I only want to know how we keep this from happening again. And we cannot have that conversation without admitting that it could be any of us, that we are fallible even in our enduring love for our children. And that sometimes the future seems so desperate, so without answers, that logic and reason and love for our kids and hatred for those who would hurt them are not enough.
I don't have the answer. I have ideas for better living situations for families, for early intervention programs for parents as well as kids, for true long term care solutions for people with autism. A friend of mine is working on a petition to amend safe haven laws. There are lots of things we can do.
But what we have now? It isn't working.
April 22, 2013
December 29, 2010
Suzy, editor of SureBaby, a site for Moms and Moms-to-Be, has written the following tips for managing stress. These tips are good for all parents, but as parents of children with special needs, we need to reming ourselves to pay special attention to managing our stress levels. I know I won't be able to live a stress-free life
Parenting Tips for Managing Stress
How to relax when you have a child with special needs
Caring for children with special needs requires a lot of attention and energy. As a parent, you do your best to be always patient and loving, but caring for a special needs child can be time-consuming and stressful. In order to provide the best child health care you can, you need to make sure you take care of yourself. Follow these parenting tips to manage your stress level and be as strong as you can.
Take a Break
When was the last time you did something for yourself? In order to manage your stress, you need to have "me" time. If you're constantly focusing on someone else, you're going to become physically and mentally drained. Take small breaks at first to ease yourself into the habit.
Small breaks during the day are good, but you also need to make time to relax for longer periods. Ask someone you trust, like a family member, to take care of your child while you go shopping or to a movie with your partner. If your child requires a lot of treatment and care, there are services available that can take over while you get the relaxation you need. Make sure you do something you enjoy. Some people need to get out of the house in order to let go, while others prefer to read.
Accept Your Limits
As a parent of a child with special needs, you always want to do more. Sometimes you may think you don't do enough, or feel like everything needs to get done in one day. However, you can only do so much, so try to cut yourself some slack. At the end of the day, don't think of all the things you didn't do. Give yourself permission to wind down and think of the things you did accomplish. Thinking positively will help you have a positive outlook for tomorrow.
Even if you can only fit in a 20-minute walk, exercise allows you to clear your mind and produces endorphins, which makes you feel happy. Exercise will not only keep you in better physical shape, it can also calm your nerves and relax you mentally.
Support can come in many forms: friends, family, support groups, doctors. Being around others who understand your circumstances can help reduce your stress; knowing others have the same struggles that you do and learning how they deal with them can be comforting. But there are also benefits to leaning on those you love and trust. Feeling a connection with those you care about and having adult-to-adult conversations will help manage your stress.
Remember, your child isn't the only one affected by their special needs. Don't forget that you are entitled to, and require, a separate life (even if it's for only 20 minutes at a time). Make the time and effort to reduce your stress, and you'll be a better parent, spouse and friend.
What do you think of these tips? How do you manage stress?
You can follow SureBaby on twitter.
July 5, 2010
I try to keep my blog posts positive. They are more interesting that way, more therapeutic. They reinvigorate my spirit. But then there are those days. Days when we haven’t slept, and Moe can’t seem to control himself. When talking to him is worse than talking to a wall. When he climbs into his seat at the table, asking for food, but pushes everything away or screams and cries when you take too long. There are days when all I can think about is how many hours it is until bed time, and then, how awful that I feel that way about spending time with my own child.
Moe is challenging these days. His sleep problems have returned and seem to really be affecting his ability to control his emotions. He gets so frustrated that he bites down on his fingers. He can’t seem to communicate even what he’d previously mastered. Can’t (or won’t) ask for more. Can’t sign “I want.” I don’t know how to help him, so I grasp at the little knowledge that I have, giving him the sensory input I think he needs, swinging, wrapped in a blanket, brushing. Sometimes I think he’s bored so I try to engage him in an activity like coloring or reading or water play. I never seem to guess right, to find the one thing that he needs at that moment. I don’t think he knows either, even if he could tell me.
On these days, I am lost. I feel like I don’t know my own son, like I’m losing him more and more. He’s falling deep into the ocean and I’m holding the rope but I don’t have the strength to pull him back up. I need someone to tell me that soon he’ll resurface, that I’ll get my little boy back. But no one can tell me that. No one knows. It could be next week or next year. I can’t think much beyond that. I thought last year was going to be the hardest one, but now I know: We’re just at the beginning.
August 15, 2009
My mom came up for the week to help with the kids, and probably to check up on me and make sure I'm not actually losing it. She arrived on Monday and I was hosting my book club that night. My plan was to pick her up from the airport and drive straight to pick up some cupcakes I ordered. Well, I took the wrong exit, and had to drive all around town to get back to the bakery. It wasn't that I was lost. I knew exactly where I was since I was headed toward Yogurtland. Anyway, at this point, I'm sure my mom did think I had lost it. But she kept this to herself. She was being kind. I think she feels sorry for me.
Later in the week, we got home from some errand and the dog had chewed my shoe. Not a Jimmy Choo or anything, but a very nice kiwi green leather flip flop that I quite liked. So I call Jeff, who says "why did you leave the dog in the bedroom?" (I should back up for a moment. Our dog chews things, so we have a long process of leaving the house which involves closing all of the doors. But because of a long story which I won't go into, I decided I would be nice and let her be in the bedroom while we went out.) Anway, back to my helpful husband. Thanks, Jeff!
Then the phones went out and I had to have the phone company come out "anytime between 8am and 6pm." And the kitchen sink is leaking. And we have a wasp nest on the front of the house. And why is it that all of these things are happening right now? Don't the gods of all the annoying shit that happens know that I'm dealing with something big and I don't have time for this? I know, I know, maybe life is trying to teach me a lesson about what is truly important, blah blah blah. And I get it. Sort of.
So what does any former project manager do when things get stressful? 1. Freak out and cry a lot about how everything is going to hell. Then, 2. Organize! I now have wonderfully organized dressers, closets and my entire office! Jeff is even in on it, installing drawers in our kitchen cabinets and shelves in the laundry room. I always could get those engineers to do what I want.