Surveys and the downward spiral

As a mom of a child with special needs, I often hear about opportunities, resources and special events. I also hear from college students trying to collect surveys to finish up thesis projects on topics such as "coping while caring for a child with special needs".

I'm a college graduate. I know what it is like to depend upon the mediocre masses to help you pull the grade that you need or complete that final project. Who hasn't had the misfortune to be stuck in the group with the frat boy who was drunk the entire weekend, thinks that Hamlet is a menu option at IHOP and couldn't care less that the small group will report on it for a shared grade? But I digress.... when a college student needs a survey, I'm your girl.

The latest survey I received was on coping strategies; after filling in my marital status and level of education, I cut to the chase and was confronted with emotions I hadn't anticipated. I was supposed to "list the information received". Information? From who? The only reason we found the birth-3 program was because a few of the therapists attended our local church. When I had asked the pediatrician about whether it might be helpful to pursue early intervention therapies, he had shrugged and given me a wobbly "Maybe. It could help." In other words? Your child has special needs. Therapies won't help. She'll still have a cognitive disability.

The list went on for coping strategies and resources:
The church? Hobbies? Sleeping? (Sleeping was a good one--- who the heck gets to sleep when your autistic toddler can go all day on 4 hours of sleep? This option was for affluent families with nannies.) Maintaining a positive approach? Exercising? (The exercise was chasing her when she would get overstimulated and run away in the grocery store parking lot-- I must say, I had some nice lean years during this phase of her development). Participating in a hobby? Or perhaps my personal favorite: participating in social events. Thinking of social events made me remember the 4th of July that Greg was out of state, watching fireworks with the church youth group in D.C. and I was home alone with all three children, straining to watch fireworks from the top of our wooden swing set, sure that the entire country was out having a magical, patriotic moment while I was home alone.

After reading the start of this list, my blood pressure began to rise and a tension headache began to form. Did I somehow repress the emotions behind the toddler-kindergarten years of autistic behavior? Because I am sure that I was absolutely fine until someone asked on paper what had helped. As I scanned through the list, I began to see that is hardest part for me was to remember how alone I felt. Towards the end of the list was "support groups" and "avoiding support groups". Support groups in my book were a calling card for bitter, angry mothers who swear the school district is out to deny their child of any sort of education or positive social experience. I avoided support groups like the plague. At the time, I thought I would rather just scrub the poop off of the walls of our home and pick up the hair she had pulled out and just eat a candy bar in the laundry room. And this method worked out well for several years because I had a decent metabolism in my 20's and a steady supply of Snickers bars in the laundry room.

Now I'm 36. My metabolism stopped working two years ago and Snickers aren't the free pass they used to be. I enrolled Brenna in a dance/speech therapy group only to find that the other mothers there were amazing. Instead of hearing a barrage of woes (like you have in the 3 minutes of wasted life that you used to read this blog), I hear about what their child can do. "He's never made eye contact like that before! He's never reached out for a friend's hand during dance before! She has never done a complete spin on her own on cue before!"

The true sting of the survey comes from seeing the wasted coping mechanisms I attempted and remembering the desperation I felt at that time. The church wasn't ready yet-- they didn't know what to do and I didn't want to be the one to tell them what I needed at that time. I already felt like a lame afterschool special meant to teach tolerance and diversity and I felt like a failure as a parent. It felt like the equivalent of jotting down a wish list and then holding out my hand expectantly to receive; I couldn't do it. Hobbies were a joke for me. Like scrapbooking was going to help me by preserving memories when I just wanted to forget the events of that day? Sleeping was a luxury. Exercise was part of the job description. Social events weren't possible yet... the key word here being "yet". I needed friends walking the same path that I was. Yet somehow I thought I was a stronger, more capable mom if I could hold it together on my own. But the holding of the togetherness was done with a shaky, white knuckled grasp.

The older I get, the more I realize how little I know for sure. There were other moms doing the same things that I was, experiencing similar situations, questioning themselves and asking God why He hadn't given their child to the developmental therapist who came to visit every Tuesday and knew how to really help her instead of placing her in our home where I felt completely clueless. I loved this child, but felt so unprepared.

If I were to fill out this survey for the present, the results would be so different and much more positive. Much has changed in ten years. I find that it is dangerous for me to look back, when I really just need to be in the present moment. If I can just live here and embrace what my reality is, I find it is a pretty decent place to be. I love my children, but I wouldn't go back in time for anything. And that is okay. The good news is that the survey has been submitted via e-mail and I am moving on.

All tied together

I finished the book "Invisible Girls" this week and the author gave her perspective that life isn't about highs and lows coming one after the other, but rather a constant mix of the two. Somehow I never viewed it this way before; instead of a fluid movement of good and bad woven together, it has always been easier to assure myself when something bad happens that I have somehow paid an outstanding balance on bad karma and can now look forward to unexpected blessings coming my way.

Today seemed to validate the author's viewpoint. I began my day with Brenna fixated on forgotten Cool Whip during a shopping trip. We were wedged in the checkout lane between the customer paying for her groceries and another person ready to load theirs onto the conveyor belt when Brenna gave me a firm reminder, "Don't forget the whipped cream for the worms and dirt." We had the "worms"; we had the "dirt"; we even had the pudding. But cool whip? Really? I didn't remember that ingredient. My option was to hold up the line and hope that Brenna would stay put with the cart while I ran to the freezer section or let it go and hit another grocery store on the way home. As absurd as it sounds, I opted for the latter. Brenna about had a meltdown. "We need whipped cream!" she chanted. She was still repeating the woes of the forgotten Cool Whip when I pulled into the garage and began to put the popsicles away in the freezer, the same freezer which was now completely thawed thanks to someone leaving the door open a full inch. The entire freezer full of meat was a lost cause.

 I bagged up the contents of the freezer and then Greg placed the full trash bags back into the freezer so that we wouldn't have to deal with stench and have the neighbors suspect we are hiding bodies for the mob. We decided it would be best to wait and pull out the cold contents on Tuesday for trash day.

After tending to the freezer, Brenna was still harping on the whipped cream. After 45 minutes of non-stop reminding of my failure to secure that key ingredient, Greg broke under pressure and drove back to the grocery store.

As I pulled out of the driveway and headed to Champaign to meet a dear friend, I lost it. I played my sappy Celtic Woman CD and sobbed for the woman in Caladonia, the woman who blessed her husband from beyond the grave and the woman whose husband left her. The festival of tears lasted for a good twenty minutes and somewhere in the time, I also let out the anxiety and frustration over waiting for Brenna's surgery, for the fear that I walked away from a job I should have taken, for the spoiled food I had to throw away, for Brenna's obsession with my reminding me of my failures and for my current state of PMS.

By the time I pulled up to the restaurant to meet my friend I felt relaxed, happy, ready to connect with her and hold that sweet baby. I tried to remember the last time I was alone long enough to cry and just get it all out... it had been awhile. And while the day started badly, it ended so well.

I often go back and forth and wonder what I need to do to just be happy. And yet, it might be as simple as letting myself cry.