A WORLD OF OUR OWN

Even though it is reported that one in 166 children today have some form of an Autism Spectrum Disorder, when we are out in public with Nick we are in a world of our own. To many outsiders, Nick can ALMOST blend in with normal two-year-old behavior. Although I do suspect that even outsiders can detect something "off"; many will not say anything and just smile.

Today we went to a birthday party at Chuck E. Cheese for Michael's friend Rachel. I often have to employ his brother Michael somewhat on these outings, out of necessity. Mostly it is to hold Nick's hand when either getting out of or into the car. Unlike most kids his age, Nick is oblivious to danger. I know most toddlers are, but we are talking about a kid who one day walked right into Carter Lake and walked himself under water. It was one of the worst moments in my life, and thankfully I was right there to pull him out immediately.

Nick will not answer to his name, so it is imperative that he is kept close for his own safety. If he happened to get loose in a crowd, it could be disastrous. He has no way of communicating, and only understands certain phrases that we have used. So I often have Michael help out in some instances where I just do not have enough hands. So, I decided that Michael should be able to go out and have fun despite his brother's issues; and that Nick should go along to also have "fun".

I try to expose Nick to as many social outings as I can possibly tolerate with him. We had barely got into the door when he began to scream. Luckily, he was calmed by me holding him, and we found our party within seconds of entering - I was thankful not to have to look for them! I automatically asked for a highchair for Nick. The party was held in the upstairs portion of the place which was quieter and more Nicks pace. (I think the good Lord knew that was best!) To many of the guests, Nick was just a very quiet fellow who entertained himself with straws,and refused to eat any of the food. Until he unleashed his fury when I had to get Michael a drink. I came back to hear him screaming, and thrashing himself in the highchair. He had a crowd of people around him trying to prevent him from tipping over.

Michael had a good time, and it was nice to see him smiling and playing with his friends. As we reached the two hour mark of the party, Nick entertained people with singing in a barely audible voice Rain Rain Go Away. People outside our world think it is just the cutest thing - "Oh he is singing!" they say. However, we here from Nickland know it really means that he is about at his breaking point, and we had better get going SOON. But there are two problems here: 1. Michael is nowhere to be found and 2. Mommy has to pee! Judging from Nicks response to my absence earlier, leaving him for a few minutes was out of the question.

I took him with me downstairs amidst all the chaos of kids having fun. Nick lasted about two minutes before he started to "shutdown". He clenched his hand to mine and every few seconds I would feel him stiffen up. When we got to the bathroom he lost it. He threw himself to the floor screaming, and I basically dragged him into the stall with me. I have become sort of immune to his screaming, but I realize that others are not, so I try in vain to calm him; but it never works. It does not help that he is pounding either his hands or his head on the back of the stall door while screaming. I know it is the noise that irritates him, maybe we should get him some ear phones to put on his head?

It is during outings like this that make me feel we are an island to ourselves.

under siege

Under siege - that is what best described yesterday with Nick. It was horrible. His tantrums are getting more frequent-and they last - for hours. He throws things, screams at the top of his lungs, and bangs his head on anything around. He banged it so hard yesterday that Mike was worried he would knock himself out. Mike was literally at breaking point. He has no idea of how to handle this. It breaks his heart to see his son hurt himself.

It breaks my heart too. I have never felt as hopeless as I did yesterday. How do you parent a kid like this? We had a long talk yesterday about how to handle his meltdowns. Mike was mad that I put him in his room and shut the door - why? Because he just screamed even more and banged his head even harder. Mike did end up spanking him - a fact that neither of us are proud of. We talked yesterday about how we should deal with this - this is different than when Michael would throw a tantrum. This has really put our marriage to the test, and I can see how couples would divorce over such issues. I know Mike loves Nick with all his heart, and it is just breaking over this. We had so many dreams for him, and now we don't even know if he will ever reach them. It seems like such a long shot from where we are at now.

The alien family lifestyle with autism

It's just so funny when we talk to other parents. To most of them, our lives seem so alien. They are simply impressed with all the "abnormal" things we have to do. This summer was the first time I felt more qualified to give Michael his vaccines than the nurses. "Just give me the needle" I thought to myself. I have lost count of how many injections I have given him - and this kid, who would need two people to hold him down for mere Tylenol, takes these injections without much fan fare. We get excited over every inch Michael grows, and every pound he puts on. We make a celebration out of all the small accomplishments Nick does. We are in constant awe of our sons.

It was Nicholas who cried when Michael went off to school the first day. Their bond has no boundaries. I have walked in their bedroom countless times to see them sleeping together. They will crawl into each others bed at night and sleep next to one another. Nicholas gets visibly upset if Michael cries. Nick will imitate what Michael does, and Michael loves to play "ring around the rosie" or chase with Nicholas. He kisses Nick all the time. Theirs is the unspeakable bond of brotherhood.

Smelling the roses

We stayed indoors today and just relaxed after our day yesterday. Nick was in a better mood, and we only left the house to go for a romp in the neighbor's plastic pool! I am also in a better mood today. Mike is usually able to cheer me up when I get down, and yesterday was no exception. He is now able to speak of autism in a more free manner, and it is not so "horrible" anymore.

A few months ago he would not even say the word "autism", but now he will explain to people when Nick acts in a funky way (like screaming like a banshee because of a rotating fan) that he is autistic. He will mention in a movie or tv show if a character seemed a little "odd" that they could be autistic like Nick. In fact, one of his all time favorite shows is MONK ... a show about a police detective who has major sensory issues on top of an uncanny ability to notice the smallest details. We have laughed ourselves silly over this show. We somehow find ourselves able to relate to these sorts of characters and see the humor in

Sometimes autism just sucks

This is just one of those evenings where I just need to write. Sometimes autism just plain sucks. Soccer practice was just such an event. Nicholas was happy for about 10 minutes until the parents of about 15 kids showed up, and all the commotion that brings. Even outdoors it is too much for him. He spent the entire 65 minutes of practice screaming. I tried everything - his cup, some snacks, his spinny toy, letting him out of the stroller, letting him BACK in the stroller, holding him, bouncing him, finally I had had enough and the last straw was strapping him in his carseat and just shutting the doors. There is only so much screaming a person can take.

It continued when we got home - he wanted nothing to do with dinner, or anybody else. He just continued to scream. I honestly felt like an outcast today among all the other moms on the field. There they were, able to talk among themselves, their children sat quietly and colored with each other, they were all so "normal". Here I had strapped my child down in his carseat because he could not contain himself. None of the other moms would even come near us. Their kids were all playing with one another so peacefully, mine could not stand anyone coming near him.

Another thing is SLEEP. This is something Nick finds hard to do recently. He has always been such a good sleeper, but recently he is horrible. He gets up frequently, and it takes him hours to go to sleep. He was up last night at 10pm spinning his shoes; in the dark. The thought of drugging him has crossed my mind, I must say. He does not nap during the day, so I know he is tired. He cannot ignore his obsessions and just sleep. I love him to death, but days like these are very hard.

Seeing the world through Nick's eyes

Nick teaches us in many ways, he does communicate...we just have to pay attention. He is not able to verbalize that he missed daddy this weekend, but he SHOWED that he did by following daddy around when he got home and "hugging" him while he was on the couch. Mike was so touched that he called me over to see... Nick had placed his little head on his dad's chest and was just beaming. Mike was beaming as well. Nick had never "hugged" him before.

A few minutes later Nick wanted to be tickled by daddy so Nick took his hand and placed it near him while he would curl up on the floor. Daddy tickled, Nick repeated. Yes, it is primitive, but it is communication at its most basic level, we just have to open our eyes. In some ways, Nick has taught us to take life slower... to stop and notice the patterns on the floor, the feel of wet grass on your bare feet (he walks funny with his legs near straight up in the air with each step), to "smell the roses".

There is a scene in the movie Little Man Tate where Fred is riding a horse (again, Fred is a character with autistic traits) and he looks up and you see the world through his eyes. What he sees is a wonderful light show with the sunlight in the trees. That is how Nicholas will look at the sky...with the same face and expression as Fred. Just for one day I would love to get inside his head and "see" things differently.

These are excerpts from nicholasweger.blogspot.com reprinted with the author's permission.

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