Tuesday, April 23, 2013
I'm a busy girl. This is a photo of one month on my dayplanner. Scary, isn't it? My husband calls it "scheduling in tongues" because it looks completely incomprehensible without supernatural interpretation. We do use online scheduling tools and calendars as well but I still can't part with my trusty paper dayplanner to be the central management center for all of my miscellaneous appointments, to dos, and events. And there are many. Many. Many.
For instance, in the month of March, Josh had 5 doctors appointments, 8 autism therapy appointments, 5 adaptive swim lessons, 2 med adjustments, 3 blood draws, 3 special consultations and 24 hours of respite care divided up into 5 sessions. Many of these appointments were scheduled then rescheduled several times. This doesn't include appointments and activities for my two other children. But I did it because it had to be done.
Recently, several people who know how complicated my life is, especially because of Josh, have commented "I don't know how you do it!"
This reminded me of an excellent novel I read a few years ago about the complexity of motherhood by Allison Pearson called I Don't Know How She Does It. It made me laugh and cry. I really related to the central character who lives an incredibly busy life juggling marriage, kids and job (getting very little sleep) and squeezing a million demanding things into 24 hours (and she doesn't even have a child with special needs!)
I've been thinking about the question, "How do I do it?" How do I manage all of the really complicated demands, details and dramas of my life? There are probably many answers to that question but, today, one thing comes to mind. A crucial part of how I can handle my crazy, "mom of a multi-disabled child" life is that I have to have a a few places in my life where I allow myself to be totally weak and needy.
For example, every once in a while, I make my husband listen to me vent about how frustrated I am with dealing with dysfunctional organizations and systems that are involved in getting proper services for my son. This conversation usually involves me expressing anger, critical thoughts and despair. I cry. My husband listens empathetically without trying to problem solve. This usually helps me a lot.
I experienced another example of being weak this past Sunday at church. At our church, we have something called, "prayer ministry". This means that at the end of every service the pastor invites anyone who has a need for prayer to come up and stand at the front of the church. You stand there facing the front, with your eyes closed and with your hands held out open in front of you and you wait for a person who is trained in prayer ministry to stand with you. When the pastor closes the service, you sit down with that person who will listen to you for a few minutes then pray for you.
This week had been particularly difficult so I just knew in my heart that I really needed to get prayer. I even arranged ahead of time for someone else to go pick up my kids from their Sunday school class so I could have a few good minutes to get prayed for. I was ready. But, wouldn't you know it? This time, when the pastor invited people who wanted to get prayer to come forward, no one went up. The whole congregation sat in the "one and half minutes that feels like an hour" time of waiting to see what would happen. No one likes to be the first or only person who goes up front to get prayer-- all eyes being on you. It feels like you might as well wear a sign on your back that says, "I'm the neediest person in this whole room!" Plus, I happen to be the wife of the pastor of our church who happened to be leading this prayer ministry time so there's the extra feeling of a spotlight on me.
But you know what? I just might have been the neediest person in the whole room. I don't know what's going on in anyone else's life but I do know that there are burdens in my life that I just can't carry alone. I decided to embrace the reality of my weakness. I walked up to the front of the room and stood there declaring my need to God, to myself, and to anyone who might have been watching. Thankfully, many other people followed. Even more thankfully, I felt that God met me in a deeply comforting way as another woman from our church prayed for me.
I have realized that I have to spend a lot of my day being competent, organized, and strong. Sometimes I can be in that mode for days on end. Sometimes I can fool myself into thinking that I have to be like that all the time for the sake of my kids. However, I am finding that the best way to be a strong person is to find the right, safe places to be a weak person.
When do you allow yourself to be weak? Do you have places where you can take a risk to declare your need to yourself, to others and to God?
Monday, April 1, 2013
"Want dried mango."
Josh and I were careening down a crowded aisle at Costco today when he spied one of his favorite treats and quickly asked for it. Although Josh is legally blind (20/200) due to an underdeveloped optic nerve, he often surprises me with how well he can use his vision when he really wants to. I was reminded of how every trip to the store can be a learning experience if I let it be. My girls were on a bike ride with their dad so we had plenty of time.
"Ok, Josh" I told him. "You get one and put it in the cart."
He did so with ease.
Usually, I speed through these visits to the store hoping to simply keep him happy and avoid a meltdown. It usually involves hitting up all of the free sample tables and keeping Josh occupied with a steady flow of snacks.
But last week, I had gone along with Josh, his aide and his orientation and mobility specialist (a therapist for visually impaired kids) as they went on a field trip to the local drugstore to teach him how to search for items, to manage a basket and to pay for those items with money from a wallet that they had put in his pocket. It was amazing to see how much he could do given patience, intentionality and plenty of time. He still has lots of skills yet to master but this was a great start. I was convicted that I need to let Josh do things on his own more if he is going to begin learning those life skills that will help him to grow up and learn to interact with the world more appropriately.
So today, for the rest of the time at Costco, I made Josh find all of the items on our list and put them in our cart himself. Then he helped me put the items onto the check out counter. When we got home, I asked him to help me carry everything into the house or into the garage. It took forever, and he dropped many items several times but we finally did it.
He was definitely more resistant to me, as his mom, than he was to his educators. I suppose this is because, as a busy mom, I usually do way too much for my kids rather than to take the time to make them do age appropriate things on their own. I realized that this is true for my girls as well when my 7 year old feigned helplessness the other morning when putting on her tights (which she totally was able to figure out by herself). Why is it so attractive to make one's Mommy do things for you? And why, is it so tempting for a parent to do things for your kids that they should be doing on their own?
For me one of the greatest barriers to fostering independence for my typical kids as well as my child with special needs is my desire to get things done quickly. On one level, it IS faster to do things for your kid. Tying their shoes for them, putting their dishes away for them, prepping their backpacks, it's so easy to just do them for my kids rather than taking the time to force them to do them for themselves.
But here's the thing. If I do things for them now, I just may have to do it for them forever. I have a feeling that they will never magically hit that moment where they just decide to take responsibility for themselves and for their stuff. SO, I have to remind myself that it is worth it to give each of my kids chances, whenever I can, to learn to do the things that I COULD do for them but that they must learn to do as well. In order to do that, I need to SLOW DOWN so we can not only get the thing done in the moment but to teach my kids to do them for a lifetime.