Because

So, on a good note, Cotton is doing FABULOUS these days. Did I mention how much I LOVE his psychiatrist!! Maybe he could do something for me hmmmm... oh yeah, back to Cotton. So well, that my husband had to leave for a few days and he did not totally freak out beyond recognition... holler! He did say "Daddy at grandma's, Daddy home!" He was also very concerned about "Daddy's truck." Once I explained that both were good he said "Daddy talk, Daddy talk ipad." Are you noticing a trend here, homeboy is talking.... ALOT! It is pretty wild given that he just turned nine, but we are in the middle of a giant language explosion... I reiterate.. holler.

I will now amuse you with some of more of his verbal antics. He has been for sometime now going up to Landon and saying "Landon hurt," obviously that has not gone over well. The other day he said "Landon hurt." Then he got up in Landon's face and said "Landon hurt, Landon wrestle!!!" It was good to know that he actually has wanted to wrestle with his brother, and not hurt him. A wrestling match ensued, and sure enough one of them was immediately "hurt." He has been inviting Landon to do all kinds of things, "Landon, I want jump." etc.

While at Walmart the other day he looked up at the cashier and said "Walmart sticker." She didn't have any, but you better believe I got that boy a sticker. When I have asked him to do something he is answering with "you betcha." I blame his sassy aide for that one, as well as the next. He was saying Aunt Jee, Uncle D over and over again, I asked him "Why Aunt Jee and Uncle D?" He looked at me smiled and said "because."

Struggle

Cotton, was not a child that struggled. His nature is (for the most part) calm, and passive. Rev, has struggled for a long time. It seems like he is always in a state of frustration. Cotton really doesn't seem to mind that he isn't able to speak, he makes his point known, but he is infinitely patient with his audience.  Rev, can speak, he CAN say anything, but the words don't come when he needs them, and he really NEEDS them. He cannot handle his body when the answer is no. He struggles.

You would think that doing this the second time around would be easier. That the grief period would be shorter. It's not, I struggle.

There is less shock, and that is helpful, but there still is a layer of confusion. It seems like a cosmic joke, or more like cosmic cruelty. But, you have no choice in such matters, you wake up, you get out of bed, you comb your hair, take your kids to school, clean your house, and think. You think of ways to help, you make visual schedules, and choice boards, you sew weighted bags to throw when one is too angry to control ones body. You set up "calming corners," and brush your child, you give them joint compressions. You have many tools to help them find the words, and they help, but still it is a struggle.

I wanted this road to acceptance to be more private. I truly believed that Rev was going to "snap out of this." Part of me still secretly believes this. But, he turns four next week. Four. My time for denial (although I have had him in all the therapies for years) is coming to an end. Our struggle has just begun, and I am so tired. I wanted to get through the grief the second time around quickly. I wanted it over with, done. It doesn't work like that, and we live in a world where no one has patience for anyone struggling, much less struggling twice. So, I'll bring it here in my not so private way, because it is struggling to get out.

How to Talk to Someone, When They Don't Talk Back

This is a really important tip for extended family members. Let's face it, it is hard to "talk" to someone that is less verbal. The usual greetings, and small talk that we use to include other children, simply won't work. Most of the time when we are around kids, that we are only slightly acquainted with, we have an arsenal of questions ready, "hi, what's your name, how old are you, where do you go to school?" All of which are great, but are of very little help to someone who is "less verbal." I often find parents awkwardly asking Cotton these questions, and then I, equally as awkward answer them for him, or I prompt him to answer them. Either way both parties feel a little....well...awkward.

Back when we were doing RDI, the program suggested making statements to kids with communication issues, instead of asking questions. This is genius in my opinion. So when greeting someone with communication issues you would say "Hey it is great to see you!" Instead of "Hey, how are you?" You can comment on what they are doing ie..."Wow, Cotton look how big your leaf pile is," instead of "What are you doing with those leaves?" Think of saying things that don't require an answer, IF the child is able to comment, they will. If not, they will not feel pressure to do so, but will probably appreciate being noticed. If the parent, or sibling tells you something about their child/sibling, bring it up "Your mom says you're ready to go back to school next week," or "your brother said you hate green beans, my son does too!" The person with communication issues, may not even appear to notice, but BELIEVE me the people that love them will!

So, today was picture day. Cotton and Landon looked so cute, I thought I would get a few pictures myself. You can guess how that went....

Cotton, stand by your brother.

Scratch that, just smile.

Thanks Landon.

Then this guy joined the fun.

What?

How do people get good pictures of their children??

On Being "Nice"

I've been asked a few times by other moms about what they should tell their kids about Cotton, or autism in general. I REALLY appreciate this question. There are so many people out there, that would rather avoid us, than talk to their kids about how to behave around someone that is different.

The answer, at least in my opinion is easy, and it goes something like this. Cotton has autism, and that makes his brain work in a special way. He talks different, he plays different, and because of this, it is hard for him to play with other kids. It's ok if you do not want to play with Cotton, it's ok if you think what he is doing is weird, it's even ok if you are embarrassed by what he is doing. BUT, you have to be nice to him. Being nice to him means, not laughing at him, or saying mean things to him, or about him. If he does something to bother you, get a parent, don't yell at him like you are a parent, he doesn't understand, and if he does, he is not going to listen to you, because no one likes to be bossed around. Always say hi to him even if he doesn't respond, and always say bye to him, even if it looks like he hasn't noticed you in the least. You will not be rewarded for being nice to someone that is different (although the family will greatly appreciate it), Cotton will not one day accept you and start playing with you, this is all about you being a good person, for no reason at all. Remember, I said his brain works in a special way, and EVERYONE no matter how different knows when they are being treated with respect and dignity.

The Easy Life

I think about my middle boy. I think about how his life is not exactly what I would have chosen. I think about what he has to give up, for his brothers. I think about when he stands out in front of his school beside his brother flapping and happily spinning. I think about how he has wished his brother did not have autism, one very embarrassing day. How he hopes that his little brother will talk like a big boy one day, and it makes me sad. I think about how we had to leave lego land before we got in the door, because it was just not something Rev was handling well. Landon did not even complain (mind you we left with $200 worth of legos anyway),  but I think about him.

I think about how happy he is. I think about how he slows things down so his brothers can participate. I think about how Rev loves him more than any other human on the planet. I think about my six year old with the patience of Job. I think about how he told the girls at the park that his brother "just had autism," as if that was so normal. I can't help but think, about what a truly responsible, caring, compassionate, and selfless little boy I have, and I know that that is not inspite of his brothers, but more probably because of his brothers. I could not have taught Landon these life lessons. If my children were all typical, I doubt that I could have even modeled these lessons, but what a gift my family is.

I am instead happy our life is not that easy. We have very little pretense as every outing we take typically ends in a comical tragedy. We laugh at ourselves, and we have a very hard time judging others. Every tantruming child I see, or mother at the end of her rope, I think, I've been there. On the flip side, every proud mama I run into beaming about her child's latest accomplishments, I can smile, and think, I've been there too. We take very little for granted, and this is something I never knew before I had my kids. Much less at SIX! I wonder about my middle boy, I wonder if he will be grateful or resentful for the lessons he has had to learn early. It's way too early to tell. I haven't really been able to raise my kids the way I envisioned. I haven't been able to hand them the world on a platter, I have not been able to shelter them from some of the more harsher realities of the world, and I think we may actually be better for it.

Special Needs on Vacation

My husband and I were very brave a few weeks ago, and we took our sons on their first "vacation." By vacation, I mean we took a three day weekend and went to the Great Wolf Lodge in Dallas TX.

After Cotton informed us via YouTube, that he wanted to have a swimming party we could not resist. Luckily my sister lives in Dallas, so our first stop was her house. She lives in an amazing neighborhood, with the most fabulous parks, the kids had a blast! My sister made a truly remarkable cake for Cotton. It was an ipad cake! She put his favorite apps on the cake and even rigged it to play Star Wars and of course Fox Fanfare... I seriously could not believe the effort she put into this cake! Cotton is a very blessed little boy, and he loves his family very much!!



After a night at Aunt Jee's house, we left for the hotel. Now, here is where you need to really have your act together. There is a LOT of stimulation at these sort of places. You need to know what you are doing, where you are going, and how you are going to do it, as much as you can, BEFORE you get there. Any sign of confusion or delay can end in a meltdown, it is important to show no fear lol. Luckily we pulled it off. We got in, changed, and into the water park within 30 mins. score team. We spent the afternoon in the  water park, 90% fun 10% paralyzing fear. The only thing that would have made it better for us, was to have 1:1 ratio. I took for granted that Landon could swim. There was five minutes of terror where we lost him, as he thought he could just go ahead and ride a slide on his own. Another important thing for us, was to leave before everyone was tired. We did, everyone was happy, we ate, and then Cotton and Rev went to bed at their usual bedtime.

So my advice, be over prepared, you don't have to do everything, focus on the most important thing and do that. There were a million side items, we could have done, but it was important for us to avoid over doing. Finally stay true to eating, and sleeping schedules. Cotton and Rev are not "go with the flow" kids, and we have to respect that. The final thing we did that may be different from other families, is that we took Landon to things he enjoyed on his own. There was some really neat activities, that Landon enjoyed doing, but would have bored Cotton, and overstimulated Rev. So, Landon went on his own. We did our best not to feel guilty about that. When we actually attended the activities, I was happy with the choice we made there were loads of babies, and overstimulated toddlers that were totally freaking out. So we did it! I am super proud of our family for a) being brave enough to try and b)you know coming home with everyone alive:)