May 6, 2009

It's a Small World

Life with Autism is difficult for everyone. It steals the life of the one afflicted and puts an untold strain on family and caregivers. About once a month I want to pull my hair out and you can nearly always count on the fact that it's either Dani's or my time of the month. Last Monday you'd have thought we were both about the "walk the red carpet" but hormones could not be blamed for our frustrating day. Autism was the culprit and it wouldn't be the first or last time it would ruin a day.

Jimmy headed out to the range to hit golf balls and Dani and I were going to Target. I could tell it was going to be a challenge because I wanted to strangle her long before we left. It was one of those days she cried at the drop of a hat. Every time she'd sign to me and I'd respond she'd cry, no matter the topic. She'd sign "work" and I'd say "Yes, you go to work tomorrow!" and she'd begin to cry. I was ticked long before we got into the car to leave.

We headed toward our destination and she was fine in the car. She loves to listen to the music and peer at the scenery. On bad days we often hop in the car and take a ride just to get a break. We drive through McDonald's for a coke and fries then off we go for a good dose of mobile therapy. I thought our drive to Target might break the spell, but it only pressed pause. We no sooner got into the store and she was at it again. Searching for deodorant that would not leave white clumps of powder on my dark tops, I was deep in thought when I turned around to see her balling her eyes out again. Standing at the end of the isle for all the world to see her distress only inflamed my frustration again. Stepping over to her I clinched her trapezius (shoulder) muscle and told her to stop the drama, which of course only gave her good reason to cry more.

I continued the trek through Target looking as if I either did not know or care my daughter was in distress. In these instances no matter what I do I can't win. Needless to say I was eager to get home to pass the weeping baton off to Jimmy. He'd had his break and I was ready for mine.

As we discussed her puzzling fixations over the littlest things, both good and bad, we notice how our elderly friends do the same thing. They repeat themselves continuously and often get upset or fixed on things that seem small and insignificant. I noticed this as my mother was dying of cancer. She was always the one up on all the latest news, until cancer began to steal more and more of her life and energy. With this in mind we began to think of Dani and her small little world. To her, next to home, work is the biggest thing in her life. After waiting over a year to begin socializing and learning new things is it any wonder she cries just thinking about going to work? It seems logical that after starving for so long for something to do that the feast of the buffet doesn't yet feel real and the hunger pangs persist. Perhaps it will take several more weeks or months for her to relax and enjoy her days off, trusting she will return to work in a few days.

Dani's world is indeed very small, but so is yours and mine. Compared to the vastness of God any wisdom and knowledge we have is like a grain of sand. In the grand scheme of things our life is but a whisper and many of the things we think are so important are as insignificant as choosing the right deodorant without interruption, yet He loves us with an everlasting love! He cares about every hurt and hang up and knows why we cry even when others do not. He doesn't get frustrated and He won't give up on us. He is the perfect friend, Father, and counselor. I love my God, He loves me, and He adores our daughter. This is why each day I strive to be a little more patient and understanding of her needs. What I don't understand I give to God and ask Him to help me in her care. After all, I too am disabled in so many ways, yet God sees me as His special child; one His Son died for on the cross. His sacrifice was so much greater than any I'll offer as the parent of a disabled child.

May the Lord bless you with His peace in your own trial today.

"He has made everything beautiful in its time.
He has also set eternity in the hearts of men;
yet they cannot fathom what God has done from beginning to end."
Ecclesiastes 3:11


katiegfromtennessee said...

Nancy, I don't really know what to say, I can see that it can get really hard for you and your family, dealing with autism. Here on earth, it seems like we are fighting the good fight of faith, and are being supplied His grace to me warriors, and more than conquerors for His glory. I feel for you. I know life can be hard, but He has overcome. In Him, were are more than overcomers too. That is what He has been trying to teach me. How I pray that I can absorb that fully! Bless your heart! Love in Him, ((HUGS)), blessings!


Abba's Girl said...

Beautiful, honest, transparent, full of the Lord...thank you for this post.

Anonymous said...

The difficult days make the good days more sweet. Thanks for sharing your heart.

hillbillyclan said...

Oh, my friend, my heart goes out to you. I know these days--not to the frequency you do, but Grant had days like that that seemed to come out of nowhere. The neurologic system is so delicate, is is not! However, knowing this does not make it easier on the caretaker. You are so right that God looks on these afflicted ones with such tenderness and compassion and thankfully He looks on us human moms with the same--praise the Lord!
--What a sweet entry. I'm so glad you shared it. I will be praying that God comforts & shows Himself Dani in ways we cannot imagine. And I know He will for I have seen Him do it. Love to you-

Anonymous said...

Your comparison of the elderly to persons with autism resonated with me, Nancy. I have thought along the lines of .... instead of delay, autism is advanced aging. Specifically, the behavior of young children, while not like most young children is often similar to teenagers.

Beautiful reminder of God's love and of the immensity of His love.