I'll admit it, I'm struggling. It just seems I've fought so long for Pook and am still fighting so many of the same battles. Why??
We just came from a lengthy vacation. We stayed at a secluded cabin, on top of a desolate mountain, with the driveway coming off a dead end road. The sounds of birds and the running creek is all we heard. Days were spent outside playing amongst God's creations or splashing in creeks and lakes with water so clear you could see to the bottom. Everywhere we went there was the sound of water rushing through rocks. There was no traffic, no television (except for the occasional viewing of Facing the Giants or Flywheel at bedtime), no computer, no telephones, no company, no loud noises.............just peace and quiet and serenity. With all that said................Pookie was "typical". Yes, I mean "typical" as in "normal".
Our first day up was rough. Then again, what 4 year old can handle a long car ride well. Add to that the unusual events of packing out things before leaving, and having to go to a place we'd not been to in a while..........well, you can imagine his struggles. Yet, the next day he jumped out of bed saying, "Mommy, I hungry". That was my first sign that something wasn't quite right. A "normal" morning appetite that continued day after day while there? This from the child we can rarely get to eat breakfast and struggle to get him to eat each mealtime?
Throughout the entire day, he didn't have a single meltdown! In fact, on our entire trip he had only three meltdowns (not counting the day we left to go there and the day we left to go back). Two of the three meltdowns occurred when we were taking the scenic route (aka= LOST) and were cooped up in the truck (5 people cooped in a small Ranger pickup). Of course, by that point in time we were all grumpy and tired of being cramped up for that long despite the beautiful mountain views. The third I'll discuss further below.
The day before we left we visited a swimming hole/waterfall we'd been to earlier in our trip. Although located right off a busy highway, the sound of the creek and waterfall drowns out all sounds of traffic. It's a secluded paradise requiring a park on the side of the road and a trek down an unmarked foot path. The swimming area has water cascading down rocks just above and just below, with a waterfall just below that. There, we splashed, laughed and had a joyous time. However, as with our previous trip there, teens and adults came to jump off the waterfall. Pook, with his lack of fear, decided to do the same. As I chased him down the shore and grabbed his ankle as he scaled an unbelievably high rock (I promise you he's half monkey), I kept telling him he could not jump. While holding his ankle and attempting to persuade him not to jump, I asked a young girl sitting on a rock next to the one Pook had climbed to hold my camera, thus enabling me to climb up on the rock with Pook. I passed over my camera to the stranger on the neighboring rock and climbed up beside Pook. I proceeded to explain to him the same things I had two days earlier. The usual "it's to deep" and "only grownups are allowed to jump" and so on and so on. The girl who was sitting with the one who had now held my camera for several minutes spoke up and told Pook that it wasn't really that fun jumping off. E&S then proceeded to help Pook realize that he'd much rather come sit between them then jump into a waterfall.
And so begin a new friendship. E&S were great with Pook! I explained that I had to watch him very closely as he sat with them as his obsession with jumping would not be easily forgotten. We spoke of his previous diagnosis and the ones yet to come. S looked at me right in the eye and told me that she would have never known Pook had special needs, apart from his obvious speech impediment. I was taken aback and had to contemplate exactly what she'd said. Yes, I've had others tell me that they couldn't tell or didn't know Pook had special needs but it was always followed by, "I just thought he was really over active" or "He just appears to have some behavior issues". Yet, S didn't follow up her statement with anything else. To all appearances, I had a normal, healthy 4 year old with no special needs! I know part of it was the white noise of the waterfall, but something clicked for me. The whole time I'd been there I had the nagging though, "Pook seems normal here" but kept pushing it down. I mean, that would just be to good to be true now wouldn't it? Yet, here was someone else recognizing it and putting it into words.
We ended up leaving the falls and heading back to the truck with E&S walking with us. As the sounds of the traffic begin to be heard, Pook reverted back to his "usual" self. The girls recognized the difference in him. Seeing him at the truck near the busy highway, they could recognize that something wasn't quite right with him. We stayed a little to long near the highway talking and exchanging contact information. Pook couldn't handle the close proximity of the traffic or the unnatural noises the rigs and cars made. His getting in his car seat became an olympic event with my body being strained physically in an attempt to take a rigid, screaming, thrashing body and place it into a 5 point harness. Once back towards the secluded area we were staying at, he calmed and was seemingly fine.
I've done my research. I understand that sensory stimulation has a direct impact on Pook's days. I know that sensory stimulation for him are things we don't even notice. The smell of clothes laundered in scented detergent, the breeze from a ceiling fan, the sound of traffic that we can't even hear, the tags in his clothes, the radio even when playing his favorite song. Each bit of sensory input pushes him to his threshold. When that threshold is reached, everything becomes a battle and struggle for him.
In the past year, Pook's sensory input has greatly increased. Visitations with his father weekly take place in a childcare environment with bright colors, numerous toys, and traffic on a busy street. Having found a wonderful church family, one to two times a week we attend. Then, we meet with a few families one night a week for dinner and a Bible discussion. We've eased him into these things. Partly because I so desperately needed the interaction and partly because so many educated people have stressed to me the importance of getting him social interaction. I've been pushed to introduce him to various sensory stimulation that I previously sheltered him from. I've been barraged with well meaning advice telling me that one day he'll have to deal with these things and must get used to them now. I've been haunted by visions of his being a teen and having a meltdown in the grocery store because there were to many unknowns and to bright of lights. And so , in an attempt to brace my child for the world, I've entered into his life regular shopping trips, music and educational television shows, childcare settings, trips to popular and populated parks, and so on. And with each introduction I've watched him melt a little bit more.
So, today I sit here writing this and am struck with a profound guilt. I KNEW what was best for my son in the beginning. We lived at home in a created peaceful, low sensory environment and he functioned greatly. We banned scented soaps and softeners, incense, and candles. We got rid of the television and rarely listened to music. The telephone's ringer was never heard nor was the answering machine when it picked up calls with the volume turned all the way down. No one came by without advance notice and we didn't make spontaneous trips. He was not required to visit grocery stores or department stores. His clothing was all soft, seamless and tagless and running around naked all day was acceptable. Shoes were unheard of, schedules were strict, bedtimes were expected to take a minimum of an hour. His diet had no corn syrup, no dyes, nothing artificial. We were content and he was a unique child that appeared normal to anyone who did visit.
Yet, I let all that change. I let people seemingly more knowledgeable then me persuade me to change the way I did things. I placed my trust in well meaning people instead of the things God had shown me. I let fear overcome my faith.
So now God, I turn my son back over to you. You have given me a most beautiful gift and charge. You have determined that I should raise him according to your Scriptures, your morals and values, and your will for his life. It doesn't matter if he grows to never enter a large public shopping center. It doesn't matter if his clothes are always going to look like pajamas. It is completely irrelevant if, once he's grown and on his own, he refuses to turn the ringer on his telephone or doesn't have a television. It's fine if he decides to live in the country secluded from traffic and noisy neighbors. It's OK if in life he prefers the company of only a couple dear friends instead of crowds and large groups. If he'd never been diagnosed..........if it was unknown he had unique and special needs..............then those choices would simply be considered preferences and not "issues requiring therapy".
And so, take my son God and mold him into what you have planned for him to be. You recognize his strengths and weaknesses. You know the depths of his being and all that he needs. Although you may not be responsible for his being born with special needs, you created him unique and beautiful. You can take any weakness and make it a strength. Let his life glorify you and your relationship with him never falter.
Forgive me Lord for doubting. Forgive me for allowing fear to overcome faith.
