Life with Shawn

There is so much Shawn info to share that it will be hard to pare it down to a manageable amount, but I will try. I mentioned the word autism in my last post and then forgot to explain further. Shawn is autistic as well as mentally retarded. His autism has really faded as he has gotten older. He has never been autistic in the way that makes him uncommunicative or socially stunted. His has always been more of a severe sensitivity to his surroundings and senses. When he was little he was terrified of many things but especially any thing LOUD. Whenever we would go anywhere he would always have his hands over his ears. Parking lots were the worst. He was scared to pieces of trucks or any loud vehicle.

Another problem was sleeping.Or should I say lack of sleeping. That little guy just did not seem to need sleep. He was probably five or six before I ever got a decent night sleep.

Here is a brief description of how his nights would go.

He would go to bed alright that wasn't usually a problem. Oh one thing to explain this a little better. Shawn loved TV. I mean he, LOVED TV. Dr Stowens, the Doctor that diagnosed him as autistic when Shawn was five, told us to let him watch TV and not worry about it because Shawn never ever sat there passively watching TV. He would interact with what ever was happening on the screen. He would be all over the room running and jumping and doing whatever was happening on whatever show he happened to be watching. This made Shawn very unpopular with his siblings when they were trying to watch something. Oh, another part of his autism is that, this kid remembers every show he has ever seen. All he needs is to see a movie once and it is hardwired into his brain. When he is stressed or overloaded he will start doing movie monologues. He pretty much checks out of what we would consider reality and he is in whatever movie he is doing. It can be really difficult to get his attention when he is doing this, but we don't usually try anyway. I figure it's just his way of calming down, kind of like his security blanket. Okay now you have all this information to help you understand Shawn's sleep problems.

Apparently all his waking hours of watching TV was just not enough for my little guy. Several times a week I would wake up and hear from downstairs Heh heh heh heh heh heh heh!!! That in case you need it translated was my Shawn's way of laughing. He had the most adorable little laugh. I called it his machine gun laugh because that was what it sounded like. Well I would hear him laughing and then I would hear him talking to the TV, that's when I knew that it would be a no-sleep night for me. I couldn't leave him downstairs unattended because he would get into every thing and there was too great a chance that he would hurt himself, or, who knows, burn the house down? So I would get up take my pillow downstairs and lay down on the couch with him. There was no point in trying to put him back to bed. He would not go and if I tried to force the issue he would just get upset and then it would be much, much worse. I would rather have a non-sleeping- machine gun-laughing-TV talking Shawn than a non-sleeping-screaming and crying Shawn.

Usually after 2 or 3 hours I could get him to go back to bed.

Usually.

So for about six years, those were my nights with Shawn. Every once in a while when I was just too exhausted, Don would get up with him but I tried to save this for times when I really needed it because he had to get up so early for work.

Another thing that was really hard with Shawn was traveling. Oh that could be torture. He would be happy in his car seat for maybe 45 minutes on a good trip. Then he would decide enough was enough. Sometimes he would just sing the same song over and over (this was fine with me) or he would start talking movie talk (also fine with me) But more often he would start straining to get out of his car seat and kicking and screaming. Now my kids would get annoyed with his singing and movie talking and I would tell them to leave him alone. I don't know why they didn't get that, because when they tried to shush him, was when he would start screaming and kicking and crying. Then they had the nerve to be upset with him. So many times I would try to get them to just let him make his happy little noises but oh no they would not be happy until they had him upset and then it was

MOM ! ! ! DO SOMETHING ABOUT HIM! ! !

I won't be surprised if said kids ,leave comments saying, "We didn't do that". Well trust me I was there I was the adult it DID happen.

One trip to Seattle was pure agony I was even ready to yell at him. Then I had a wonderful idea of what to do. I really think this idea came to me straight from Heaven. Shawn LOVED Game shows. He especially loved the Price Is Right. Well suddenly I got this sanity saving idea. Shawn, I said to him (actually I had to say it calmly a few times before I got his attention). Shawn, apple or cherry? He looked at me for a few seconds and then said, cherry. DING DING DING DING DING. Was my answer.

We were suddenly playing Game Show.

Pencil or crayon, cow or dog, house or tree, lemon or grape. It went on and on about every fourth time would be EEENNGGHHH sorry Shawn, wrong answer. He LOVED this game! We could play this forever with him and he never got tired of it. Donald and Heidi would sometimes step in with their own choices for him when I needed a break. So with the life saving invention of APPLE or CHERRY traveling with Shawn was no longer the hell on four wheels it used to be.

There is one other traveling with Shawn story that is such a family legend that I know my kids will never forgive me if I don't include it.

Okay he was probably five or six. We had been at Seattle and we were going home. I wanted to stop at Mervyn's for something, so we did. Now Shawn LOVED escalators. It was a huge treat for him to go up and down escalators. ( He also loved elevators but we'll get to that later). Well as soon as he saw the escalator in Mervyn's he pulled away from me and ran for it. Man that kid was fast. I was totally freaked out thinking of how badly he would hurt himself on that escalator without me holding his hand and helping him. I caught him just in the nick of time and gave him a swat on the bum. Then to really make an impression I would not let him ride the escalator and we quickly left the store.

BIG MISTAKE!

He kicked and screamed all the way to the car. Only Don could handle him and get him in the car and into his car seat. He never stopped screaming. For over an hour we were subjected to his screaming. "Go Back Go Back I want to ride the escabater (that is not a spelling error that is how he pronounced it). Well he basically put this protest on continuous loop. For at least an hour and a half this is what we had to listen too. I'm sure you can imagine the mood in our van that day.

It was not pretty.

After about an hour and a half I was actually able to calm him down enough to tell him that if he didn't stop screaming he wasn't going to get to do anything. Well he considered this. After that we were subjected to another hour and a half of, "Okay okay, I'm calm, I'm calm. . . . NOW TURN THIS CAR AROUND AND TAKE ME BACK TO THAT ESCABATER!!!!!!
Yep, for another hour and a half. Well I knew when I was defeated. We all needed a break from this torment so when we got to Yakima we went straight to the Mervyn's there and I took a subdued, somewhat humbled little Shawn for a three minute ride, up and down the escalators. Ah yes, the joys of traveling with Shawn. How I wish we had, had portable DVD players back then. We got two of them shortly after they appeared in the stores and traveling with Shawn is now a walk in the park.

All right I said I would tell about Shawn and the elevator and this is it. Shawn loved staying at hotels. He still likes hotels but he was fanatical about it when he was little. He also loved elevators so I always booked us on an upper floor so we could use the elevator. One time when we were in Portland we were staying at a pretty nice hotel on, like ,the third floor. One afternoon when we were coming back to our room, that naughty little Shawn broke away from me ( I always held his hand. Honest.) so he breaks away from me and dashes down the hall to the elevator. Well he must of been at one with the elevator gods because circumstances made it open just at the time he got to it.

This time we didn't catch him in time.

He was on that elevator all by himself and I am sure he was just pushing buttons at a furious pace.The funny thing is, we could hear him going up and down on that elevator. I'm sure that must have been one of the most sublime moments in all of his short little life. We could hear his little machine gun laugh all the way up and down five floors. He was saying "Momma, Momma, look. I go up. Oh, now I go down." Over and over he was doing this. In the meanwhile Don and Donald were on the neighboring elevator trying to catch him. I could not believe how long it was taking to catch him and get him off that stupid elevator. We finally had me and Courtney and Kelly on the ground floor waiting for him and Don, Donald and Heidi stationed on the other floors. It took probably about ten minutes for us to finally coordinate our efforts and a few more minutes to catch him. When we had him I am ashamed to say I gave him one of probably three real spankings he ever had.

It's funny how much we all laugh about these stories now.

Most autistic children develop sometimes strange fascinations with certain objects. For some it will be doorknobs for some vacuum cleaners for Shawn it is guns. Not my first choice that's' for sure. If I had known that the first time I let him get a toy gun at the dollar store what a monster I was unleashing I would have steered him to the bouncy balls. Shawn has probably the most vast collection of toy guns of, anyone in the western hemisphere. He loves these guns. He actually has lost a little bit of his fervor for them now but it has been his obsession for years. What was funny was how well he knew each gun. He would sometimes have three or more of the same one and he could tell each one apart. And if he lost or misplaced one? Not a happy situation. I swear there are guns he lost and three or four years later he still remembered them.

This stock hold of weaponry made Shawn very popular with all the little boys in the neighborhood.

They would come over to ask if Shawn could bring out his guns and play. He had so much fun playing guns with all the little boys in the neighborhood. Even in to his teenage years he would go out and play with them. And the funny thing is, I don't think they ever thought of him as any older than themselves.

Now Shawn was autistic and also mentally retarded, and that makes what I am going to write about next almost unbelievable.

Shawn came knowing how to read!

One day when he was three, my brother Mike had brought over one of those movie players that used what looked like a big record. Of course Shawn was front and center. Well eventually everyone had left the room but me and Shawn. The movie ended and the word STOP started flashing on the screen. Out of the blue Shawn starts saying STOP! STOP! At first it didn't register what was happening but I soon realized that he was reading the word off the screen.

I COULD NOT BELIEVE IT! !

Here was my little three year old boy that could barely master half of the things most eighteen month olds, could do with ease, and he was READING!!! At first I thought it was just a fluke and that maybe he had heard someone else say stop. After all he was such a little mimic. But over the next few days I would write down simple words on a pad and show them to him and he could read ,every one of them! Of course no one believed me at first. He was like that singing frog in the Warner Brother's cartoon. He would only do it for me. Eventually I got him to read for Don and then other people. It was funny because when Courtney, who is seventeen months younger than Shawn, was learning to read, if she didn't know a word, she would ask Shawn and he would read it for her. To this day he can read most common words. He has never really developed into an actual, "read a whole book" kind of reader. His teachers and I always had great hopes for him but he just doesn't have good retention or comprehension. But I've always thought it was cool that Heavenly Father gave him that one little gift.

There has only been one time when someone has said something mean to be about Shawn, and believe it or not she was my visiting teacher. She was a very backwards uneducated woman. Her children were the terror of the Primary and she didn't have many friends but I always tried to be nice to her. Well one day when she and her partner were at my house visiting, and I had been telling them how I was so tired because of Shawn's nighttime adventures. She looked at me and said,

"I've always wanted to ask you, how do you put up with a child like him. Don't you have a hard time even loving him?"

I was so shocked that she would say something so horrible that I don't even really remember what I told her. I know I made sure though to tell her that Shawn was one of the greatest blessings I had ever been given. Now wouldn't you think this would maybe shame her and shut her up? Nope. This idiot just wouldn't let it go. She started to say that if she had a child like Shawn she knew she would not want him and other really hideous things. Her partner and I just sat there staring at each other. We could not believe her. All I could think of were her awful nasty children whom she had no control over and she had the nerve to sit there in my house and say those vile things to me. Well I got rid of her as quick as I could and then called my Relief Society President and told her I never wanted this woman to come to my house again. Apparently her partner was of the same opinion because she was back the next month with a new sister as her partner.

It really breaks my heart to think of all the disabled children born who are not wanted. I wrote a blog about that very thing a couple weeks ago actually. I love my Shawn more than almost anything. We all do in our family. One of our favorite things to say is that, everyone should have a Shawn of their own. I honestly don't know why Heavenly Father decided that we got to be the lucky ones but I will be eternally grateful that I was chosen to be Shawn's Mom.