Thank God for Autism

When Nick was first diagnosed with Autism, I remember my mom (and a lot of other people) who were sympathetic. I mostly remember my mom saying, "I'm sorry sister" after she heard the diagnosis, because I think that's the only time she has let me feel sorry for myself. It wasn't long after the initial diagnosis that she told me, "It could be worse." Although I knew it was true, I used to get really upset when she said things like that. I mean....obviously I knew that it could technically be worse, but seriously? It really didn't help me feel any better about the diagnosis that "it could be worse." I really did try to live by these words, because I knew that she knew what I was going through. See...my mom has managed to raise two special needs children herself. I know that sometimes, the only thing that probably kept her going was the idea that yes, "It could be worse." I even remember telling Angie (our favorite ITS therapist) that "It could be
worse" when she expressed sympathy over Nick's diagnosis. I remember the moment very clearly. I told Angie that Nick had received his diagnosis and she said, "I'm sorry to hear that." I shrugged my shoulders and said, "Well, it could be worse." Angie said something to me at the time that I will never, ever forget. She told me (in not so many words) that yes....it could definitely be worse. However, she told me that I should still let myself mourn what I have lost. It is true that Nick will never be the child or possibly the man that I had expected. I do still let myself mourn that loss....but mostly I just celebrate everything that makes Nick, well....Nick. I can't imagine Nick without Autism....it's just a small part of who he is.

Now, for a long time, I was angry with my mother for always reminding me that "It could be worse." I felt pretty sorry for myself for quite awhile. Sometimes I wished she would just shut up about it and mope along with me. What can I say? She's never been that kind of a woman. Over the years, I have learned to appreciate everything that Nick does have and everything that he CAN do. I have met other children with Autism who will never speak, who do not sleep through the night, who will never, ever be able to function without continuous care. I remember the first time I heard Nick say "mommy." It took him 2 1/2 years to say it and I felt truly sorry for myself that I had to wait SO long to hear it. Then I met a child with Autism who had never and probably never would say "mommy." I felt so guilty and ashamed and for once, I finally realized how much worse it could be.

Over the years I have seen many examples of how lucky we are. After all, Nick is very smart, he can walk and run and jump, he says lots of words, I know he is happy and most likely; he will live a long and healthy life. What about parents who will never hear their child say "mommy" or "I love you?" What about parents who will never see their child walk or run? What about parents who don't know whether their child is happy or what their favorite food is? Most recently, my best friend's nephew was diagnosed with cancer. He was about 3-4 weeks old when he was initially diagnosed and he has been doing chemo ever since. He is now 4 months old and they have just learned that his tumor has grown. So, now I say, what about parents who don't know whether their child will live? I have been thinking about that little boy pretty often lately. I am so grateful for my healthy child. It is for these reasons that today I understand that "It could be worse" and I
thank God for Autism.

The WILD thing

Let me just start this out with a little summarizing. My child has been WILD for several days now. I know moms of little boys and mom of kiddos with Autism will understand, but wow. For the past four days, Nick has been being absolutely as destructive as possible. I feel like the only words coming out of my mouth lately are, "Nick, no, Nick stop, Nick, you're gonna hurt yourself, Nick, stop tormenting your brother, Nick, it's not o.k. to put the dog in a headlock" etc etc etc. Anyway, you get the picture, right? I knew it was especially bad when I told him to stop doing wrestling moves on the poor dog. Yes....I'm serious. So, what does he do as soon as he stops messing with the dog? I know, it's hard to believe, but he climbs on top of his dresser and counts, "ONE, TWO, THREE.....JUMP!!!!" Nick proceeds to take a flying leap off the top of the dresser onto his bed. What can I say? I give up the fight and get some chuckles out of watching him do this several more times.

Nick has also re-discovered his love of tearing up paper. The other day, I left him at the kitchen table with a bowl of strawberries and a cup of rice milk. He was watching a cartoon and Max came with me while I went to the bedroom to take a shower. I must know Nick a little better than I give myself credit for, because I went to check on him right after getting out of the shower. He had managed to spill the whole cup of milk on the kitchen table. I caught him alternately dipping the strawberries in the milk and attempting to clean the milk up....with our bills. I had to throw away several bills that were literally falling apart because they were so wet, but thankfully managed to save our new insurance card so I could take it to register the new minivan. I cleaned up the milk and retired to the bedroom to dry my hair and get dressed. Again, I checked on Nick as soon as I was all dressed and dry. Imagine my surprise when Nick ran up to me as soon as I came near the kitchen!! This is a common technique by Nick to distract me from whatever mess he has managed to make. So, I immediately get past him and find that he has found the insurance card for the minivan and ripped it to shreds! So much for managing to salvage that! Then I find that Nick has managed to locate (and open)some dog treats. I guess he wanted to see if they could float, because I locate said dog treats in Ollie's water bowl. Sigh....

Finally, yesterday was probably one of the wildest days of all. We had several errands to run after school and Nick was NOT happy about that. He screamed and threw a fight and we eventually had to carry him out to the car. He threw a fit at every single store we went to. This included K-Mart, Target and Sam's Club. He started off at K-Mart by running into the store and promptly throwing himself on the floor and screaming. I wrestled him into a shopping cart (again, not a fan) and fought him trying to stand up or get out of the cart for the entire shopping trip. This is pretty much the way it went at every store, but we had to get stuff done and Nick doesn't get to determine what we do, so we just powered through it! He has also been doing this new thing where he lets out super loud yells whenever he feels like it. He doesn't do it when he's upset or anything, just seems to do it randomly. So, we got lots of interesting looks and some stares while we were out and about. Sometimes I feel like yelling at people that he's not trying to be bad and that he has Autism, so they can just stop staring already!! I've managed to keep my mouth shut so far :) Maybe next time I'll just say, "Go ahead and stare, he has Autism, so he's not paying attention to you anyway!!" :)

Don't Call me Autistic

I have debated long and hard about whether I should write this post. For the sake of education and understanding, I've decided that it's a worthwhile subject. I hope no one takes this the wrong way and everyone takes my opinion with a grain of salt. If you've ever said this to me, please know that I am not upset with you and I understand that you didn't know any better :)

Ok....deep breath....I'm just gonna put this out there. I have a problem with the word Autistic. I cringe when I hear others talk about "Autistic" people and when my child is referred to as "Autistic." If you must describe my child as having a neurological disorder, I would prefer that you say that he has "Autism." Now, if you know me in real life, you know that although I am "a tree hugging liberal," I don't usually get caught up on labels. HOWEVER, my mind was certainly made up in this instance after reading Jenny McCarthy's first book about Autism. She explains (and I agree) that although her child DOES have Autism, he is more than Autistic. In the same way, yes, Nick has been diagnosed with Autism, but he is not defined by that diagnosis. Nick is technically Autistic, but he is also sweet, rambunctious, lovable, handsome, independent, smart, silly and so much more.

Hence the reason this blog is named "So Much More than Autism." I have made it a point never to refer to Nick as "Autistic" in front of him. I don't ever want him to think that he is and can only ever be Autistic. When I think about him, I don't think about my "Autistic" child. I think about my boy with the beautiful blue eyes, who gives awesome hugs, loves to jump on the bed and is currently infatuated with the eating of pepperoni. If he is always described as or dismissed as "Autistic" then how will he ever overcome that label? Basically, I'm afraid that calling my child Autistic would become a self-fulfilling prophecy. While Nick will always have Autism....he can certainly be much more than just Autistic. I don't ever want him to think that I have no higher expectations or goals for his future.

So....sorry for the novel, but please don't call my child Autistic. He has Autism, much in the same way that a person may have Cancer. That doesn't make the person become Cancer. They are simply someone afflicted with a disease that they are trying to overcome. Just as a little disclaimer here about my view on Jenny McCarthy. I think it is wonderful that a celebrity is bringing so much awareness around the treatment and diagnosis of Autism. I support anything that she and any other parent of a child with Autism does to advocate for their child. I do NOT agree with all of her views about the correlation between Autism and Vaccinations and I don't agree with her idea that you can "recover" a child from Autism. However, she is a mother just like me who is doing what she thinks is best for her child and I can't fault her for that. I do think she is very knowledgeable and I wholeheartedly agree with her view that our children are SO Much More Than Autism.

We've come a long way, baby!!!

It's been awhile since I updated, but the last week has helped me realize just how far Nick has come. Nick only had school one day this week, so he has been running wild for the last few days. Allen and I met with his teacher on Wednesday for Parent/Teacher conferences and were very pleased with his progress. He has met every single one of his IEP goals for December!!! He was late in meeting one of them, but his teacher thinks he should be on track to meet his March and May goals as well! We got a "brag sheet" from his paras that said how proud they were of Nick, how fun he is to work with and what a little character he is. (I'm pretty sure that last one is code for ornery, mischievous and/or rambunctious.)

Anyway, we were sitting in the meeting with his teacher and she was telling us about how Nick has the "routine" down. He knows what he is supposed to do and when he's supposed to do it and if he isn't sure, he just watches the other kid's leads! While she was talking about this, I had a sudden flashback from Nick's first year in Preschool. We went to his first ever IEP meeting and chatted with his future teacher, therapists, principal and everyone else. This occurred a couple weeks before he was to actually start attending Preschool in November 2008. After the meeting, his Preschool teacher offered to show us the classroom. We were very excited to see it and got to the room just as the afternoon class was arriving.

I watched the kids all hang up their backpacks, wash their hands, go to the restroom if needed and sit down at a little table. At this point the teacher explained that they were "signing in" for the day. The kids all pulled out pieces of paper and practiced writing their names several times and turned them in when they were done. The teacher explained that Nick would just practice scribbling until he was able to actually write his name. We only stayed for about 10 minutes and as soon as I hit the hallway, I burst into tears. My mom and Allen were both with me and I explained that there was NO WAY Nick would ever be able to do that stuff. I simply could not ever imagine that Nick would write his name or follow any type of routine. My mom is a retired elementary school principal with a background in special education, so apparently she is used to this kind of reaction. She chuckled a little, gave me a hug and told me that Nick would be just fine. She said she knew that he'd be able to do it and that you can't expect it to happen on the first day. I remained doubtful and cried the entire way home. Nick did start school eventually and I guess he mostly figured out the routine. He never did write his name.....I saved all the papers they sent home with his scribbles from signing in at the beginning of the day. He rarely talked during that time and didn't seem to come very far by the time the year was over. He had also failed to meet almost all of his IEP goals by the end of the year. So....we fought (and won) to have him placed in the "Communications" (Autism) Preschool class. Nick began in his new class in June 2009 and has continued in the same classroom ever since.

So.....back to the Parent/Teacher conference discussion. I got teary eyed just thinking about how much Nick has accomplished since he began with this new class. Imagine that Nick knows the routine now!!!!! He met his IEP goals AND I am proud to say that he can write and verbally spell his NAME. Nick walks around labeling things and learns new words just about every day. In fact, at Parent/Teacher conferences, his teacher mentioned that he has his colors all figured out, so they are working on concepts like "big and small." Literally three days after this meeting, we were in the car and I was getting Nick out of his car seat. He was very insistent about something and kept saying the same thing over and over, although I had no idea what he was saying. I finally stop what I'm doing, look where he's pointing and listen very carefully to what he's saying. He points at a tree and says, "BIG TREE." OMG....I am so shocked that all I can do is smile ear to ear and tell him, "you're right....that IS a big tree!!!" He gets a self satisfied grin and looks very pleased that I have understood what he's trying to tell me. All I can think is, "We've come a long way, baby!"

I'm a Bad Parent......not really.......but.....sometimes I feel like it

Ok.....so, tonight at work I was telling some stories about Nick and I had this sudden, depressing feeling that I'm a terrible mother. It all started when we dispatched a call about a missing 10 year old child with Autism. The mother told us that she had not seen the child in 2 hours. So, one of my co-workers asked me, "wouldn't you keep a closer eye on a kid with Autism?" He went on to ask me if I had a "leash" that I used with Nick. Yes...he was serious. I should mention that the un-named co-worker is a single guy with no kids. Anyway, I told him that Nick is a tad old for a leash, and that we have tried similar things and Nick freaks out when we use them. I remember trying to use one of these contraptions at the Iowa State Fair when Nick was about 2 years old. He laid down on the ground and refused to walk at all. As soon as you took the backpack off of him, he was tearing down the street like an escaped convict!

So, the point is.....I was explaining to this co-worker that Nick has no regard for safety rules. He routinely launches himself down an entire flight of stairs, runs away from us and generally beats the crap out of himself and his brother. Nick has no built in fear when he becomes separated from us in any situation. I started relating all of the times we have "lost" Nick and suddenly realized that he has escaped pretty often. One of the most memorable times was when we went to Silver Dollar City (which is a large amusement park type place for anyone who doesn't know). Nick and Daddy were playing in a very large water park type area of the park. Daddy told Nick that they were done playing and started down the stairs with Nick right behind him. Well....apparently Nick decided that he was not done playing and he turned around and went right back inside without his daddy. By the time Allen made it out of the area, I was standing there asking where Nick had gone? Allen turned around to show me he was right behind him, only to find that Nick was long gone. We both panicked and immediately started looking nearby for Nick and calling his name. (not that Nick really responds to his name, but we were scared....so give us a break.) After several minutes, there was still no sign of Nick, so Grandpa and Grandma joined in the search. We looked frantically for a good 10 minutes before I finally spotted Nick in a whole other area of the park. I took off at a dead sprint and found him happy as a lark, playing with some stupid squishy balls in a play area. He hadn't even realized that we were gone and didn't know enough to be scared. This was just last summer, so he was 3 1/2 years old....most kids would have been searching for their mommy and crying....but not Nick.

I related another story when we were all visiting at Grandpa and Grandma's house. We were hanging out in the living room and Nick was terrorizing the cat and generally causing havoc. (nothing unusual here) Grandpa went upstairs for some reason and I thought Nick had followed him. About 30 minutes later, Grandpa came back downstairs and said, "where's Nick?" Well....we weren't too concerned yet, but we started looking around the house in his usual places. We figured Nick had gotten tired and laid down on his bed and fallen asleep. He's done this multiple times at Grandpa and Grandma's house and it was fairly late in the evening. After a fair amount of time spent searching the house, we still couldn't find Nick. At this point, I was holding the house phone just waiting to dial 911 and have the police come help us find him. I couldn't have cared less what anyone at work thought about me losing my kid....I was just so scared. Just as I was ready to call, Grandpa decided to go look outside because he realized that the garage door had been left up. This terrified me, because Nick is able to open the door from the house to the garage and we normally keep the garage door closed to prevent an escape. Sure enough, Grandpa found Nick outside.....he had climbed quietly into our car and was sitting in his car seat just hanging out! Even now, just thinking about how differently that could have gone makes me shiver. What if he had decided to walk down the street and either got lost or got taken by someone driving by? So many things could have happened...but thank god they didn't.

Hopefully Nick will develop those natural fears that most kids have much earlier than the age of four. Until then, we just have to watch him like a hawk when we're out in public. We have also discussed putting alarms on the doors that go outside. At least that way we'll know if he does try to go outside alone. Even if some kind person were to find him, Nick couldn't tell them where he lives or who his mommy is. He doesn't know his phone number and heck....he doesn't even know his last name! We have just now gotten to the point that if we ask, "What is your name?" He will respond, "Nick." In all reality, I know that I'm not a terrible mother, and I know that other parents lose their kids and it makes them feel awful too. It just scares me SO much more that Nick doesn't understand that he is lost :( In case anyone was wondering, the call I was talking about at work? The 10 year old girl with Autism was found safe and sound!

My little police man

Well, we managed to make it through the day with only a couple of attempted acts of violence against Max...LOL! I made sure to have my eyes on the boys at all times. I was still able to get in some time on the treadmill while they played nicely in the same room. They have both discovered how fun it is to put items on the treadmill and watch them fly off.....insert eye roll here. I had to stop after about 30 minutes when Max tried to get on the treadmill with me. Later on, I took a shower while Nick and Max played with dinosaurs in the bathroom...sigh. I guess it's going to be awhile before I get any alone time, but at least I'm not constantly worrying if Nick is killing Max.

Nick did manage to push Max over on one occasion today, but at least he didn't bang his head on a table this time. I also stopped him from pushing Max over when Max tried to turn the t.v. channel. I should add that Nick has become our little policeman when it comes to Max. He is constantly correcting him and making sure that he isn't doing something he shouldn't. Today, it was while I was drying my hair after my shower. I was watching a show and Max kept pushing buttons on the DVD player. It wasn't affecting my show, so I was not terribly concerned. Nick on the other hand was extremely worried about this. He started pushing Max every time he saw him reach for the buttons. I kept telling Nick not to push him and showed him that I was ok with Max pushing the buttons. He finally seemed to get the point and stopped pushing. Yesterday, Nick was upset that Max kept opening the toilet lid while I was in the bathroom brushing my teeth. (Is it obvious yet that they follow me everywhere?) Nick slammed the toilet lid down every time Max lifted it up. This resulted in some smashed fingers on Max's part and I had to kick them both out of the bathroom! Another day, Max kept attempting to let Oliver out of his crate while Ollie was in "time out." Nick was trying to keep the crate handle shut while Max was trying to open it. I have been calling Nick my little policeman, but I guess this is actually a good thing? He is actually recognizing when Max is doing naughty things and attempting to correct him. He doesn't always go about it the correct way, but at least it seems like something that is developmentally appropriate aka being the tattle tale. LOL

Here's another story about something irritating that Nick does that makes me immeasurably happy. I caught myself sighing and rolling my eyes today and then realized how far Nick has come, which brought a big grin to my face. Nick is super excited about labeling objects. As a result, he just HAS to identify everything and you HAVE to acknowledge that he identified said object. Today we were watching a cartoon and every 30 seconds, Nick was up in my face saying something. This how it went....Nick: "PUPPY, PUPPY, PUPPY." Me finally: "Yes, Nick it IS a a puppy." Nick walks off with a huge grin on his face. 3o seconds later....Nick: "BUNNY, BUNNY, BUNNY." Me...sigh: "Yes you are right....that is a bunny." Again Nick walks off with a self satisfied look. We repeat this scenario approximately 20 more times with various other items. Just as I am getting extremely exasperated with this whole "game" I start to remember how I used to pray that he would be able to speak and label objects eventually. I also realize that he is waiting for me to look him in the eyes and acknowledge his speech, just like we used to do with him. What a smart little boy!

This is why I can't be a Stay At Home Mom....

I have a rather interesting situation going on with Nick right now. For once, I am just at a loss about what to do with him. Nick has always been really rough with his little brother, Max. I remember about a year ago when we had an appointment with Nick's Developmental Pediatrician. We brought Max, who was only crawling at that point and just wanted to be involved in whatever his big brother was doing. Max did something that really upset Nick and Nick hauled his leg back like he was going to kick him. I got to Nick in time and he never actually connected, but I saw how wide the Dr.'s eyes got. He said, "yeah, you probably shouldn't leave them alone.....ever." I have taken that advice to heart, but it's hard to ALWAYS be with Max....especially when he ONLY wants to be with his big brother. Lately, I have noticed that Nick strikes out at whoever or whatever is nearby when he is upset. For example, he will push his little brother down or throw an object while he is throwing a fit. In the past, we have caught him pushing his brother down several stairs and I've often seen him "tackle" Max like a line backer!

I guess what I'm saying is that Nick is a rough playing little boy and he really enjoys any type of sensory input he can get. Even though I know everything I know about Nick, I am at a loss about what to do over his actions today. On one occasion, I guess he decided that Max was in his way and he pushed him off the couch. Max fell backwards and hit the back of his head on the coffee table. Another time, he pushed Max for some unknown reason and Max fell and hit his head on our nightstand. The scariest time was when I walked into the next room for some reason and I heard Max start screaming. I came into the kitchen and saw Nick with his hands around Max's neck. I don't know if he was trying to stop Max from screaming or if he was really trying to hurt him. Shortly thereafter, I was standing right there when Nick again tried to grab Max and push/pull him to the ground. On each instance, I took Nick by the arms, looked him in his eyes and told him "you do not put your hands on your brother....you are hurting him!" I said it in my best stern mommy voice with my most serious eye contact. Each time Nick's lip started trembling and he looked ready to cry. I made him tell Max "sorry" and give him a hug. I don't know if he understands, but I just don't know what else to do? Apparently he didn't learn his lesson, because he kept doing it over and over again! At this point, I'm actually getting afraid that he may really hurt his brother.

On the bright side of things, the boys and I went out and played in the snow for about 45 minutes. Nick had an awesome time and had me cracking up when he decided to roll all the way down our snowy hill of a front yard :) He also did a lot of snow angels and lots of jumping in the snow. I showed him how to throw snow balls which earned me several sneak attacks with large chunks of snow as hard as Nick could throw them! Max is still really unsure about snow and mostly wandered about aimlessly. He did pick up some snow a couple of times, so I think he's warming up! I'll try to post some pictures of the sneak attacks when I get a chance.

I know that I just got done complaining about Nick's behavior today, but Max was in rare form as well. Mostly, he was a big pain when I was trying to get out of the house to get to work on time. He managed to let the dog out of his crate twice after I'd put him up! Finally, I got Oliver in the crate and Max was right behind Nick and I as we walked to the garage...or so I thought. I'm strapping Nick into his car seat and here comes Oliver tearing out the garage door! I start hollering for Max and come around the side of the car to find him standing in the snowy yard, one shoe off, playing in the snow. Sigh. So finally, I strap Max in his car seat, put Oliver in his crate and get new socks for Max. It's days like these that I am actually grateful to have to go to work!