Sunday, February 13, 2011

The light at the end of the tunnel

"There is a light at the end of the tunnel." It's a note of encouragement when things are dark and difficult that things will get better - the light. Looking at the glass as half full, instead of half empty. Being positive. Looking at the bright side. Right?

There is a saying in the autism community. Perhaps you've heard it applied to other situations. There is a light at the end of the tunnel... and it's a train. Yes, I've said it. I've believed it. I've let it get me down and then I feel like I have no hope, not as a mom and not for my daughter. Then one day, God spoke to me and reminded me that He doesn't make mistakes. He knew before He made her that there would be challenges for her. That there would be challenges for us, her parents. But aren't there challenges anyway? Parenting is not easy. In fact, it is probably the hardest thing I have ever done - even without autism and sensory disorders in the mix.

Children have minds of their own. Their own opinions and preferences. Their own pet peeves. Their own attitudes. We try to form them into the people we would like them to become, but they still choose whether to be the way we encourage and influence them to be or whether to explore the foreign territory of temptation. Children learn more by example, mimicry, if you will, than by what we tell them. That's probably what makes parenting so difficult.

I got off track... Let's go back to the light at the end of the tunnel. Child B has always been a little different. In short doses, you likely wouldn't even notice. But we did. Not just in comparison to A, either. Her gross motor skills were beyond belief at a very young age. When most babies were just learning to roll over, B was climbing. She couldn't crawl yet, but she could pull herself up and climb at 5 months. I took A to the bathroom and left my 5-month old baby on a bare floor in a room with a child-size table where A left her lunch of beef-a-roni. What did I find when I came back? B was standing up, holding onto the table, and eating beef-a-roni with one hand! Yes, she was 5-months old. At 10 months, she was learning to walk, which isn't unusual for a 10-month old, but to find her standing on the sit-and-spin, spinning herself and giggling, was a bit unusual. Even more so was pulling her off the arm of the rocking chair, where she was standing and holding onto the back of the chair with one hand, and moving back and forth to make the chair rock, squealing, "Whee!" I knew she would be a handful.

It took some time to put the pieces together that she sought stimulation by swinging, spinning, balancing, etc. She would put things on her head that were heavy in order to feel the pressure. But light touch would send her through the roof. She couldn't be comforted when injured. Not through nursing, swaddling, cuddling, even from birth. She wouldn't have any part of it if she was upset or hurt. She still has a hard time with comfort - 8 years later. And some things just didn't affect her much - like when her elbow was dislocated in a spinning/swinging incident when she was 2. She simply held her wrist and whimpered a few times before falling asleep rather quickly. (I knew something wasn't right and she had it fixed within an hour.) And she avoided groups of peers during play dates, often retreating to a quiet place where she could play alone, but then later she would ask why no one was playing with her.

Now some may ask how early she received any vaccinations, and I will assure you that she was demonstrating enough "quirkiness" early enough that vaccination played no role in the challenges that B has. She did, however, have a completely natural malpositioned birth. She had significant bruising and some muscle rigidity. Did that play a role? Only God knows. And He was OK with it. He has a plan for her and has provided excellent therapeutic services to help her learn how to deal with what is difficult for her and how to interact better with others. What she has not needed any help with, and God has blessed her with, is her ability to tell it like it is. She is very literal and brings great joy to our lives with her questions and quick observations. She notices everything.

When she first became aware of communion, her eyes looked like they would pop out of her head. As the basket of bread and little cups of juice passed, she asked, almost horrified, "Is that really Jesus' skin and blood?" Later that day I explained to her how they represent exactly what she suspected and she had tears in her eyes. I remember thinking that even at the young age she was, "She gets it." She has an amazing knack for understanding things way beyond her years and asking when she doesn't. Silly books like Amelia Bedelia have helped her understand figures of speech and when something isn't literal. In fact, she uses the word "literally" quite frequently in order to let others know when she really means what she's saying.

So, what does this have to do with the light at the end of the tunnel? Well, B has made tremendous progress. We just celebrated her 8th birthday this past week. A couple years ago, when she was 6, she seemed more like a 4-year old in maturity. Now I have to remind myself that she just turned 8, she is not 9! We have stepped into the light.

Oh, but did I mention that in the past couple weeks, my just-turned-5-year old can't stand the way underwear feels? To the point where she won't wear it. She throws herself on the floor screaming, trying to rip it off. She hasn't worn pants in 2 or 3 years because she doesn't like them. She used to wear skorts, until the underwear thing started. She can't stand those now either. She might wear a skirt when we leave the house, if I put it on her and carry her out while she kicks and screams... and I make her wear something under it! She has developed what seems like a cough to an observer. However, it is chronic - every couple seconds, clearing her throat or exhaling deeply, like a sigh, every few seconds. In other words... constantly. What is going on? It's all sensory. While B was mostly a sensory seeker, it seems that C is mostly sensory-avoidant, which is a little more challenging. Think about it... if you know you need something, you seek it out and the need is met. On the other hand, if something bothers you, you will avoid it, even if it the very thing you need in order to get better. She avoids those sensations that she needs to be exposed to in order to get used to it. If you cannot relate to this, just take my word for it - it's hard, it's exhausting, and it's frustrating.

This is where I could say that the light at the end of the tunnel is a train. Yes, I have thought to myself, probably even said out loud, "Great. Another one. I thought this was behind us." I will be honest and say that I don't look forward to taking this road with another daughter because it is so hard - for her and for me. However, the light is real. And God walked with us through it the first time. He is walking with us this time. He never left us. In fact, He knew before we did that 2 of our children would have sensory disorders. I am so thankful it's only a sensory disorder and not something worse - not something that would take her from me yet or that would require expensive medicine or extensive time in the hospital. So thankful that there are known therapies to help her. And I look forward to the day that I rejoice when she shows improvements. We've had glimpses of those days when her struggles are less. I so clearly remember the tears of joy that I cried when B asked me to brush her hair for the first time. She was almost 5 years old and brushing her hair had been torture to her every day of her life to that point. I know that God will get us through this with C, just as He did with B.

And I believe that God does not make mistakes. I trust in Him that He will use these challenges in our lives to glorify Him.

2 comments:

  1. You're a great mommy. (((hugs)))

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  2. My youngest child has SIGNIFICANT neurological issues (nonverbal, developmental delay)--and she is a "seeker"--she would spin forever in a swing, there is no slide too high, etc!

    However, her big brother, my "typical" boy, had quite a few sensory issues, that I didn't know what I was doing or how to cope with at the time. Now I know better. Tagless T-shirts are a blessing. Really, truly, you CAN live a functioning life without underwear (especially if, like your cutie, you like to wear swimsuits and leotards!), he still wears his socks inside out so they don't rub his feet. Having an OT in our lives is a blessing!

    We are their moms for a reason. Even when things are stressful, remember how much emptier our lives would be without them!

    PS--I found your blog through "being here is half the fun"--if you are interested in finding out more about our family, stop by my blog--"SmallDaughter" is the "neurologically interesting" one--but the other two are really fun, as well!

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