GiveForward page: Melanie Baldwin.
Note: 10/6 - we share with a heavy heart - Melanied has died. Get your affairs in order, plan as if tomorrow IS th future for your child. And know that as a community of like minded autism parents, we will look out for one another and for each others' children. KS
By Cathy Jameson
A friend of mine is in the hospital. She’s battling cancer. Breast cancer struck a third time and has turned life a little bit upside down for Melanie, aka Booty Kicker, from the Thinking Moms’ Revolution. She’s fought cancer twice already now and beat it. We’re all cheering for her to kick cancer’s butt one more time. She has to. Her son, Luke, needs her.
Being in a hospital undergoing tests and treatment is likely taking an enormous physical toll on Melanie. The emotional toll of being separated from her family must certainly be taxing too. My heart goes out to Melanie as she has had to depend on other people to not only care for her, but to also look after Luke. Luke is severely affected by autism. With limited language and needing round-the-clock care, Melanie has been his primary caregiver for years now. My son, Ronan, is also severely affected by autism, and I, too, am his primary caregiver. Our children depend on us to be 100% on every day, all day and sometimes all through the night.
Many in our community have reached out to help Melanie’s family. The compassionate responses and generous giving has been overwhelming in a good way. It’s balanced other emotions that many of us have felt including one of the scariest emotions: fear. I think many of us have felt fear at one time or another with the biggest fear being what will happen if I’m not around to help my child.
Our community thrives on hope though, including offering hope to Melanie. People within our autism circles, and strangers from a great distance, have pitched in offering prayers, kind words and financial support. They’ve provided daily encouragement and gotten people from non-autism circles to also help. There is a GiveForward campaign to help raise money for her family. This leap-into-action response has me in tears—tears of relief and tears of joy. I pray that our efforts and those of complete strangers who’ve identified with Melanie’s story will carry Melanie through the tough days and until she’s able to be with her family again.
A lot of us moms have said in the past that we need to live forever. I don’t doubt that thought has crossed Melanie’s mind quite a bit in the last few weeks. Since my husband and I plan to live forever, we should be all set in caring for Ronan until his death. In all seriousness, I know I need to get a few things squared away just in case my mortality does have an expiration date.
I experienced a reality check watching so many people come to the aide of another family affected by autism. In thinking about what must be happening as my friend finds herself in the hospital longer than expected, I realized that I am not prepared to drop everything and let someone else run my household. Not that it’s a mess, it’s just that I know my household best. I know where everything is. I know where everything goes. I know everybody’s schedule. I know where everyone is supposed to be. I know it without needing a reminder, without having to peek at the calendar and without needing someone’s help.
While my husband is at work, I oversee and take care of most of the daily activities in our home. Because I handle most of it on my own, I don’t usually share day-in and day-out sort of information with anyone. I just haven’t had to. And honestly, I haven’t felt the need to. But in reflecting on how quickly Melanie needed medical assistance and had to let someone else handle Luke’s daily activities, I think it’s wise that I do share some of this information with someone else while I am able.
If ever I am forced to (or have had to) drop everything, be it from a sickness, accident or worse, I realize that I won’t have much of a say in what happens in and around my house. I’d have to let someone else pick up where I left off. Letting someone else be in charge of what I do naturally may not be easy. That’s why I feel called to act now. Just like people offered to help Melanie as quickly as possible, I want to make that transition run smoothly for whomever comes to my family’s rescue.
From something as simple as marking the family calendar with upcoming events as I learn them, to posting Ronan’s daily visual schedule in the kitchen (because he has a modified school week and his schedule changes daily), to adding my husband’s email to Ronan’s weekly therapy appointment reminders, to creating a list of which of Ronan’s doctors to contact in case of a medical emergency, it’s important that I organize that now because, at the moment, some of that simple information is stored in my head and unknown to others, including to my husband!
Today, should I become temporarily incapacitated, would someone be able to walk in my home and do what needs to be done? With how unorganized my files are (they should be called piles, not files), the short answer is no. I keep information in my head, not in an easy-to-reference file.
I’ve been saying for too long now that I need to clean up my act.
I’ve been saying that I need to update the emergency contact list and also let my ‘in case of emergency’ folks know that they’re on the list.
I’ve been saying that I need to sort through the piles and file what needs to be filed and chuck what needs to be chucked.
I’ve been saying that I need to print some of Ronan’s medical documents and have them at the ready in an emergency “Go” bag.
I’ve been saying that I need to review other paperwork like the will, the life insurance policy and other personal documents that hardly get used but should always be updated and accessible “just in case”.
I’ve been saying that I need to show someone else where everything is as well so that there’s less confusion should our regularly scheduled lives become disrupted.
I’ve been grateful that I’ve been mostly healthy and able to do much of the work I’m tasked with alone. I’m grateful that I’ve been able to get by without having great organization skills. I’m grateful no one has had to step in and step over my mess. But, if someone had to take over Ronan’s care full-time right now, or oversee the very busy household I’ve established, it would take days to sort through things to make sense of everything. I’m not doing anyone, including myself, any favors by running things the way I have. With all of my responsibilities and with how life really can be unpredictable, it’s time to get myself and the lives I am responsible for in order.
I used to have a Great Big Book of Everything for Ronan. Most of his medical reports, labs and paperwork was in there, but I’ve taken out some of the reports and put some of those papers here and left others of them over there. I need to dust off the piles and reorganize them into user-friendly files in that big binder. It’ll have The Who, The What, The Where and The Why Things Are The Way They Are sections. I know having that information at one’s fingertips will be better than sorting through a pile of EOBs, school papers and miscellaneous junk mail I haven’t gone through that’s sitting on the floor sitting on the floor in front of my perfectly good file cabinet.
After making sure the sections in the binder are ready, I want to also include a section called The Little Things. That will include things like which local stores I go and list which certain brands of safe foods I buy for Ronan. It’ll also have a note about which doctor is more approachable for school health forms and another one listing which online stores offers the supplements we use. I’ll add a page of phone numbers of family and friends and highlight the name of the neighbor who’d be better to call in the middle of the night if we have an emergency. Those little things aren’t always part of daily life but could help an outsider learn the ropes quicker after they’ve jumped in to help my family.
Right now, I have a lot of work to do to get that binder ready, but in the long run, it’ll serve a good purpose. It’ll be designed for someone who finds themselves having to step in on my behalf and may relieve some worry, my worry as I look at the future honestly. Much as I’d like to, I know that I can’t live forever.
Many moms, especially autism moms, can’t help but worry who about the future. We’re told time and time again that people don’t know how we do it. They don’t know how we have the energy to do what we have to do. They praise us for that and oftentimes add a comment like I don’t think I could ever do what you do. These people know that without a doubt, we know our child best. They also know that we’ll stop at nothing to get our children what they need. Who will carry that torch when the moms get sick, or when they get old, or when they die? As much as many parents wish to stick around forever, parents know that that just isn’t possible. That’s why it’s important to take care of ourselves now, to ask for help when we need it and, for people like me, to get better at being organized. Because our children need us. They need us alive and kicking. Just like Luke needs his Mom, my children need their Mommy too. They need me today, they’ll need me tomorrow and they’ll need me the next day. They need me to always be there, to always hope for the best but to also realistically prepare for the worst.
Cathy Jameson is a Contributing Editor for Age of Autism.