Trick or Treat...

We had a great halloween this year. We had some good friends come over, had a little party and off we went. We were quite the motley crew. Our friends have 3 kids, one is on the spectrum (Cotton's best friend), and it was way too funny seeing those two trick or treating. "M" could care less about the candy, and politely asked everyone if he could come inside to see their ceiling fans. Cotton who does not exactly like candy all that much, would jump up and down excitedly, repetitively saying his approximation of "candy." Landon was with M's older brother, who was too cool for us, and I laughed my pants off watching my 3 year old try to act like he was also way too cool for us:P Rev was a super cute giraffe and did a good job TOTing for the first time. Funny he is only one and a half, and totally knows what candy is:) He definitely got his daddy's sweet tooth.


Needless to say everyone was ready to go to bed after our exciting night!

Hot Pool

We made a quick trip to Dallas this weekend to visit my sister. We do this a lot, as the town we live in has little by way of shopping, it really rocks that she lives so close. (Plus, it was her birthday so bonus) Anyway, the kids really love going down to see her, but it was the first time that we ever had to deal with our kids REALLY missing someone. Landon cried half the way home, when i finally got him to tell me what was wrong he said "I just miss Aunt Jee." (insert pouty lip and deer eyes). Cotton clung to a frog toy that Jee had bought them at the zoo repeatedly pointed to it and said Aunt Jee. When we got home he ran to his talker and typed "Aunt Jee, come again." Rev was fairly oblivious to the whole "missing" thing. It was very sweet, and I am glad that the boys are really getting to know their aunt, it doesn't hurt that she has a super cool house with super cool parks near by and who can forget the "hot pool" as Cotton calls her hot tub:)

The really nice part for me an hubby, was how easy it was. Rev is really starting to out grow his general grumpiness. I am sure it has something to do with an increase in being able to communicate and understand. I love when he signs for milk, instead of pumping his fist like this... he balls both of his fists tightly and looks a little like he might have an aneurism. He also can really play with his brothers now, and when they are not stealing toys from each other, I can get a free 15 minutes:) The kids traveled easier than ever, and packing only took an hour!!! I don't want my kids to grow up too fast, but this was a nice, welcome change. This year I am so happy to say we are staying home for BOTH holidays (hippee in the words of Landon). We figure next year Rev will be much more willing to travel long distances, and if we move, it will be very likely that Dad will not be here for both holidays. My little boys are getting so big, and grown up.

IEP

We had our annual IEP last week, and it was really the easiest one ever. I usually leave an IEP feeling like there must be something I am forgetting. This time we all seemed to be on the same page. I even scored a 19" touch screen computer for Cotton's classroom:) Our biggest hurdle right now is bridging the gap between what Cotton knows, and what Cotton can communicate. That of course puts a strong emphasis on increasing communication, and finding alternatives to writing (thus the 19" touch screen). Don't worry writing itself is still on the "list" but we need alternatives to achieving his academic goals. While we have made unbelievable progress with Cotton's talker, Cotton uses it to tell us what he wants to talk about, and not necessarily anything "conversational," although that is happening with greater frequency.

So about the computer. Apparently, the lab just got a new touch screen. When they showed Cotton computer, he picked it up right away. They were doing a reading program that everyone thought was above his head, lo and behold Cotton set to work completing the task easily, and with a crowd of about 15 faculty and staff behind him in amazement. They were all so giddy about it, it was not a hard sell to request one for the class.

I am truly blessed to have such a great team behind him right now. I know my last post was a bit somber, sometimes it gets so hard to explain why some kids just take off, and others continue to struggle. But there is progress, I really like this school because they are very much focused on working with the disorder, respecting his limitations, but not letting him use them as an excuse. Personal accountability is of the highest priority with this group, and I know that this will bring him farther than any academic skill.

When I start feeling defeated I always go back to the same mantra " you can get a job with a 4th grade education, but not if you are sniffing all the girls hair." I think I have mentioned this on my blog before. A lovely lady that speaks in our area, has a 20 year old son with autism. Her story is a success story although it is not a recovery story. This was something she said at one of her speeches that has just really resonated with me, and has comforted me in so many ways.

The Mountains Win Again

One of my favorite songs is "The Mountains Win Again" by Blues Traveler. The Bible says if you have the faith of a mustard seed you can move mountains, and there mine stands....mocking me. We have just done everything to help Cotton, all the "right" therapies a couple of not so "right" therapies, we have struggled, and pushed, endured, and prayed. I have watched every single one of his friends with autism learn to speak, ask questions, and eventually even have somewhat of conversations. While we still struggle with just the fundamentals. I always feel like a failure when it comes to Cotton, like somehow, someway, I missed the memo. For us, autism, does not explain everything. I think one day their will be a genius geneticist that discovers a gene that explains it all (there are plenty of disorders associated with hypopigmentation, so I would not be surprised.) For right now, I suspect that Cotton actually lies somewhere between autism, and angelman's syndrome. One day science will tell.

I was at my pre IEP meeting the other day, and the kids from the class came in. I know them all well, so they were all saying hi, to me and telling me about their latest adventures. One child in particular had really made tremendous progress. So when they left I mentioned to the group ( the 8 people involved daily in helping Cotton) that I was really amazed at how well E was doing. Cotton's TVI (teacher for the visually impaired) looked at me earnestly and said, "you know that you are dealing with more than autism." She said it so compassionately, I immediately felt the weight of failure on my shoulders, release, and subsequently punch me in the stomach. I am not sure why, but it was almost like she was saying that it was not my fault. I didn't realize how much I needed to hear that. I am not sure I realize how much I need to believe it. It is hard to admit that I feel like I have failed Cotton, seriously when I look back we left no stone unturned, and we are and will continue to press. But, just having someone confirm that this is as difficult as it is, was just nice.

The Sun Never Shines in the Upside Down House

We have been busy. We basically have rearranged our entire house, all in the name of sleep. It all started with an idea to change the dining room, into a bedroom/office. Okay, so a little tacky but really there is not way around it. Cotton absolutely MUST have his own room, and Rev will not be ready to share for a few more months. So anyway, we set up the room, but.... the colors were not right, so I needed a new rug, and then curtains, and on and on. Somehow, in the middle of all of this, I decided to get my master bath redone. I am almost done, although I promised myself I would be done last weekend, Alas, when you live an hour away from the nearest Lowes, there is no room for error. I am almost there, one more trip down the road and we should have it:) I would post pictures, but it is totally nothing special basically it went from hideous early '90's wallpaper, dried flowers and brass, to very neutral sellable beige....(yawn). Either way I will be thrilled when it is a far away memory.

The room situation has worked out nicely. The room looks enough like an office, that I don't think many people (because I have so many people over) will notice. You know my huge dinner parties will have to wait. lol This was the first weekend that we really reaped the benefits of the "makeover". Landon came into my room quietly at 8:30, that's right 8:30!!!! I can feel him staring at me even in my sleepy haze, as he informs me that the sun is in fact up. (He knows to stay in bed until he can see the sun:P). I lazily (and not my best mommy moment, but you know you do it too) turned on some cartoons for the boys, about an hour later Landon came back in to ask me if I could hear that Rev was awake (yes he will sleep until 9 everyday if you let him:):):)... Give me a break, we have not slept in, for a while now. So, my house will not be noted in the next Better Homes & Gardens, but it is working for us:) Nothing like a day to sleep in!

Little Boys and Dead Bugs

Landon has done a lot of growing the last few months. His imagination is through the roof right now. Nothing is safe, he even had his noodles dueling at dinner the other night. I have purposefully kept his schedule low key in hopes to give him plenty of room to explore and imagine. It is so easy to fall in the over booked trap. I have to admit, that I do feel a pang of guilt when I hear about other kids schedules. But, I know my kids, when we are "doing" a lot, I am basically hauling around tired cranky kids. I still maintain that the most important job for a kid is to have plenty of playtime, and lots of time outside to experience the world. Boredom is an opportunity to open your eyes, look around, and pay attention. If you are really paying attention to the ants on the ground, the pumpkins growing in the garden, or the way the paint flows around a soggy piece of paper, you are not bored.

He is so much fun to teach. Everything is interesting, he adds a new perspective to everything we do, and he just plain makes me laugh. We did a yoga story during my yoga class the other day that involved a dead bug (baby pose), really it was one little activity and ever since that day every thing we do talk about or otherwise has to involve a dead bug. The randomness and the comedy of it all... right now he is telling me "I am dreaming of shoes and fishing"...I just want to bottle him up and remember how sweet and silly this age is.

Love Lifted Me

On the heals of the new Autism Speaks PSA, I found myself pondering what autism had done to my life. Is it an insidious creature that stole my world my marriage and my son, like depicted in the video? My answer was most assuredly no. When Cotton was first diagnosed it was the worst time of my life, I have trouble even thinking about that point, it is such a dark place. I think at that time I could have totally related to the "monster" coming for my child. In the beginning that is how I saw autism, something that kept my son from being who he really was. The truth is without autism, my son would be a different person all together.

One of the greatest lessons that autism has taught me, is to love people as they are exactly at that moment. Not to dwell on what you want them to be, or how they might be, but to love them perfectly and purely. That pure love (not wanting that person to change) ironically is what truly changes people. Most of all it changed me. I have been a proud and judgmental person for most of my life. People with special needs scared me, and even I am ashamed to say offended me. Now I see people with special needs as the most beautiful people on the planet, with more to teach than a thousand Phds could ever imagine. I know they work harder and longer than I ever could, and that they show the people who love them what that word really means. My marriage is stronger because of autism. Any pretense we had going into our marriage was stripped clean, we were exposed and raw, luckily we held on to each other used each other for our strengths and carried each other when it got too hard. It is true that our finances were rocked a bit at first, but we soon became experts on getting funding for the therapies that Cotton needed. We are on this earth to learn and grow, and that can be excruciatingly painful. Autism didn't steal my child, it is for better or worse part of my child, and I love every inch.