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.

Putting it off

I tend to put off unpleasant things. Things like changing a juvenile e-mail address to one that is more appropriate for a grown-up, picking up after the dog in the backyard, returning a phone call that may involve telling someone 'no', these are the things that can be drawn out over long periods of time. Typically what snaps me out of it is accountability, or the impending arrival of company.

I have known for three years that we need to talk to someone about Brenna's back. I can see the curve; I know that it is affecting her gait. Yet, there are unknowns that scare the liver out of me and allow me to live in a place of denial, not allowing it to take up daily space in my head.

Friday is the big day for us. We will see her General Practitioner and most likely get a referral to talk to a specialist about what needs to be done. I feel a heavier burden for Brenna's health issues. Why this is, I don't know. I love my children equally, but I feel more responsibility towards Brenna. I am fearful that we will have a decision to make and have to trust that the decision will be bathed in prayer and we are guided into the best decision for how to proceed.

The Amazing Fix

We just returned home from staying with family out east. Spending 6 days split between two homes was an enlightening experience. It may sound ridiculous, but when you live with someone for a few days, you pick up on the little things they do that makes life simpler. One such simplifying discovery was a removable shower head. I was in awe. I informed Greg that this could be a life changing addition to our bathroom at home. Since the Mother's Day project (refinishing the porch swing) is still in progress (i.e. pieces) out in the garage, I told Greg that the swing could go into a box for all I care and the showerhead represent my belated Mother's Day gift.

For years, my morning has consisted of frequent "surprise showers" for my oldest. She still needs help showering and it typically means that I end up soggy from arm pit to knee. But a removable showerhead? I may never wear wet clothes to work again. A vision danced through my head of neatly pressed (and dry) clothes, looking purposeful and tidy as opposed to the rumpled, damp, I-may-be-too-hip-to-care-or-just-completely-sloppy-look that I tend to sport.

True to form, Greg hit Home Depot the day after we arrived back at home and came back with the magical shower head in tow. Its promise all but sparkled with fairy dust as he installed it for me in the bathroom.

Emily had the first shower and offered to hold the showerhead while I worked the shampoo into her hair. She promptly waved it in front of me, completely soaking my side. "Okay" I thought to myself, "a period of adjustment is to be expected here." Brenna went next and in a flash grabbed it from my hands while I attempted to condition her hair. The bathroom floor was sprayed with a sheen of water and the right leg of my jeans were soaked through.

It looked so promising. But I discovered that the problem was with me.

My husband and I are looking at a home a few miles away. With the challenges we have had in the past year, a change could be a good thing. And although it seems simple to trade in one set of problems for a fresh start, is it really what we are supposed to do? Or is that new home like the magical showerhead: full of promise, but no real change from the underlying issue. Only time will tell.

Friday

Brenna has been looking forward to her doctor appointment for weeks. Whenever she gets to go in for a routine checkup and have someone's undivided attention for 15 minutes or more, she is in heaven. I had the paper in hand, ready to jump through the hoop to get the signature for her Special Olympics participation form, only to find that she could only have one physical a year. She enters 6th grade in the fall and will need a physical and series of shots for that--- the doctor suggested that we take care of it today.

I have had cold sweats off and on for the better part of a year anticipating the 6th grade physical appointment. Brenna is 3 inches shorter than I am and nearly weighs the same. When she was little, I could hold her still, later on I could sit on her. Now, it's dicey.

He finished the exam and said. "Okay ladies, the nurse will be in with the shots in just a moment."
"Sharks?" Brenna queried, looking at the marine life poster on the wall, sure that she had just misunderstood and that he was again bringing up the shark she saw on vacation last year. I let the door close before I broke the news.

"No, honey, not sharks, "shots". You need a shot to go to 6th grade at Jefferson. You want to go to 6th grade next year, right?"

She whimpered a "no" and her lower lip trembled. This was the pits. How many nurses would it take to help Brenna get her shot? It was like an intro to a bad joke. One nurse later, one very kind, patient nurse later, we had three shots in two arms and were on our way to McDonalds to celebrate. I didn't have to sit on her, I didn't have to call in reinforcements-- it was nothing short of amazing.

At McDonalds she sidled onto a tall stool, seated just inches from strangers on each side. Brenna was completely comfortable sitting by three strange men on either side of us. She echoed what one man said to start a conversation and laughed when Henry ate his pickles. Sometimes I think she has better social skills than I do.

Sometimes it's nice not to know what is ahead, whether it's shots or having a child with special needs, a medical crisis or death in the family. It's nice not to know. It's good to take a day at face value and simply live it.

Asking Big

This morning I prayed and asked God to do something really big today. Not next week, not in a few months, but today. It has to be today. I can't remember the last time I prayed a prayer like that-- a dreamer's prayer where you just lay it out and have faith that He will come through.

For the past few years, my prayers have been very safe. They have been "blessing" prayers, with my true hopes cloaked in a very thick and protective "Your will be done", which wasn't wholly meant, but was more of a safeguard in case He didn't answer. Those weak and politically correct prayers didn't go up with a whole lot of faith that He would do it. Part of the problem was a feeling of unworthiness. After all, there are a multitude of world crises going on--- do the prayers of a mini-van mom really even count? Do they have the intense importance to shoot straight up to the heavens, or do they filter and break apart just before the stratosphere?

They do matter. I have such a deep and real sense this morning that they do that it rocks me to the bottom of my soul. He knew it was coming before I bowed my head--now I am waiting for the answer. Have you asked Him big today?

Do not be like them, for your Father knows what you need before you ask Him.
-Matthew 6:8

Will she ever?

Our family ate at Buffalo Wild Wings yesterday for Greg's birthday. This is nothing short of miraculous to me. In a place with multiple TVs on every wall, loud music and close seating, our family actually sat down and ate together. No one ran away. No one cried. No one did beat box rapping at our table. No one bit or was bitten. No one hid in the bathroom for several minutes at a time. And most surprising, no one stared at us. This dining experience comes in only second to watching the 4th of July fireworks together.

As I watched Brenna calmly hold the menu and choose the popcorn shrimp, I realized that each child, regardless of who they are, is completely in the realm of "wait and see".

When your child has "autistic tendencies", there are some aspects of normal that you dismiss and walk away from. You act like you don't care if you see the fireworks, like it isn't a big deal that you skipped the mall with the santa or that you may never go to Disney. You never volunteer for the Holly Day Breakfast, not because you don't care or support the PTA, but because your child would melt down in the controlled chaos within 10 minutes or less. These choices aren't driven by finances, but by past experiences with your child. After so many times of sensory overload in a crowd, one begins to avoid and stop seeking out ways to prolong the torture.

Brenna turns 12 next month and has already passed some of the projections that specialists had predicted for her. When she was small, I was the crazy mom that drove the therapists and specialists nuts.

Will she ever look at me? Will she ever use the bathroom? Will she ever talk in complete sentences? Will she ever live independently? Will she ever want to interact socially with her peers? Will she ever want to hug me, or care if I leave the room?

If someone had initials after their last name and worked with Brenna, I believed that they were like a trustworthy fortune teller, able to accurately predict what was ahead. I just wanted to know. I just wanted to be prepared. It drove me beyond frustration when I was told the elusive, "We just have to wait and see. It's too early to tell."

So many of the "will she ever"s have been answered with a firm yes. I only hope I didn't spend too much time straining my eyes, trying to squint into the blurry future, only to miss the crisp and distinct present.