Happy Autistic Halloween!!

Happy Halloween to you all today! I absolutely love this holiday because it gives my creative side a little boost to be able to think about a costume. I got wacky this year and made my own costume (which NEVER happens!). But, after spending $30 on Liam's costume, the purse strings were a little tight. I mean, that is the downside of Halloween. The older they get, the more the costumes cost. I haven't broken the news to Liam that he is right on the cusp of being too old for Halloween. I'll let you know how that convo goes later!

So, I'm curious to know how YOU have survived Halloween in the past? I know with kids who are NOT autistic, Halloween can be a hellacious time of pre-diabetic sugar rushes, costume meltdowns, and anxiety. So...how does your little one handle it?

I don't know how we have managed to come out relatively unscathed with Halloween. I think the biggest issue has been more about the costume than it has been about doing the actual trick-or-treating. I am always grumpy about spending a ton on a costume that will be worn only once. (a little of my daddy comin' out on that one) So, of course, Liam will try to pick out the costume that has a lot of bells and whistles or requires an oxygen mask to wear it. I have learned that I have to give him a number of what I am willing to spend BEFORE we get to the store. Sometimes concessions are made, but for the most part, I try to stick to the plan.

This year was a bit different. He began saying in August that he wanted to be a storm trooper for Halloween. I was like, "yea, how hard can that be? They have those available every year."

Well, apparently they do not, and certainly not when you wait until the last minute, which of course is the Saturday before Halloween being the following Wednesday! Which, for this girl, who does not like to plan anything in advance, that is a ton of time!

(retailers are mocking my words right now)

We did not find the storm trooper in his size, but I was able to convince him that the other star wars character was AMAZING! And, when he saw the mask, he agreed. But, when he got home and realized that just because something is pictured on the outside of the costume package, this does not ensure that it will be actually IN the package, he was less than thrilled about that one.

When everything is literal to these guys, you cannot expect to put an awesome-looking gun on the outside and not expect a downright riot when the accessory is not included.

This was when, in one of my more brilliant moments, I explained to him that the gun was indeed included in the costume, it was just painted on the forearm. He bought it, and the crisis was averted.

The other thing I have found helpful is to have some sort of plan of action for the actual houses you will hit up on Halloween. The nice thing about Liam is that at one point in time (I cannot remember when) I told him that he would only have to go to 10 houses for trick-or-treating. He has stuck with that plan for some time now. Ten houses. That's it.

Sometimes I feel jipped. I'm thinking, you have a costume, and you don't have ANY of the candy I like to eat, so let's get this party started!! But, once we've hit ten, he's done. And, that's okay too because it's usually freezing anyway.

But, back to having a plan. Remember I am a 'P' on the Myers-Briggs. And not just a moderate P, I am full-blown Perceiver. Like it feels like torture to have a plan. I like to see how I feel in the very moment we are doing something. SO, you can imagine all the ways I have had to concede in my life. If there's no plan, somebody's gonna blow their top!

Many times this just ends up being me grabbing a notebook a little bit before we go out and drawing him a map of the street where we will be going. Obviously I don't know all the houses that will actually be participating in Halloween, (or the ones with good candy :) but even just making it look like I have a plan makes it better than winging it.

We have learned to avoid the jokester dad who dresses up like Jason every year and thinks it's cool to stare down the toddlers who are innocently walking by.  Jeez! Some people!  He is obviously living out some childhood fantasy that his mother never let him take a part of. (and for good reason)

I have also learned to give up what my expectations are! Oh isn't this the life of a parent with an autistic child!! We have to temper the things that we wanted our children to experience. And, many times, this becomes the source of grief- which, is more about us than it is about them. Sometimes, it might be just okay if they stay at home. Maybe they want to open the door for the neighbor's kids. Maybe they don't. Maybe they just want to sit and play the video games they have been playing for years. This is tough. Because sometimes you just want them to do what everyone else is doing.

And this is a crossroads. Will I let their lack of interest affect the way I enjoy the holiday? It's okay to be upset and disappointed. And, maybe this is the one night of the year that you make a grocery store run to get a bag of Reese's- for yourself!

Try to be kind to yourself and your child, adjust those expectations, and enjoy that bag of candy like it was the last bag of Reese's on earth. And, then, you can laugh at all the parents who are freezing who wish they had their own stash of Reese's!

Champions in the Ring

It is somewhat early this morning on a Saturday. With my oldest son in marching band, it feels like I have taken on a part time job. But, there are no complaints coming from this girlie-girl. I have spent most of the past decade waking up at the crack of dawn on Saturdays against my will. Liam is still peacefully asleep, and that is just fine with me. Once his feet hit the floor, I am on duty, so I treasure every 'non-waking' moment. :)

Big bro Walker carries a heavy load on and off the football field.

With Walker being in the marching band, it has been a different kind of busy. A nice busy. There are rehearsals, band camps, performances, and meetings. There are early mornings and late nights. But, as a parent with a child on the autistic spectrum, most of my school visits and activity have been IEP meetings, doctor's visits, and therapy appointments. This is the one memo that you do not get when you first get your diagnosis of autism. 

These psychologists know what they are doing when they give you the big 'A' on your child's chart. They don't blast you with all the information on the first visit. Because if they did this, you would hurl yourself off the nearest, tallest building. They don't tell you everything that you will encounter. They allow you to decode this for yourself, one day, week, month at a time, like a slow, painful death. (I kid, I kid)

I think this is the grace of not knowing the future. If we as parents knew what we would encounter, we could not handle it. We are just doing good to make it until the next day, much less month. 

Liam had the misfortune of having five or six different special ed teachers in less than five years. You might be tempted to say, so what? My kid has a different teacher every year! To that I say, talk to the hand! Because if the change and disruption of moving up a grade is not enough, the change in leadership for a child with autism can be devastating. 

This is the secret that we parents of spectrum kids know. You cannot do sudden change. Your kiddo will put you through the seven realms of hell if you do things to disrupt their cosmos. Autistic children depend on consistency like we do water. It brings them comfort and stability in a very unstable world. 

(To prove this point, generally every morning I watch the Today show. At precisely 7:27am, the local news comes on the TV with an update on news, traffic and weather. I know this because at 7:27am, their NBC news theme music comes on. Liam dramatically stops and drops whatever he is doing to stare at the TV and listen to that theme song. He will stare at it so intently and then have a smile of relief like, "whew, okay, I can move through the day now." I made the horrific mistake of instead having the ABC affiliate on the other morning. I shall never do it again.)

But, back to the lecture at hand, (Dr. Dre reference), change is no bueno for these little guys. And, unfortunately, we must learn the hard way. If I do something twice it quickly becomes 'routine' for Liam. So, I really have to be careful what I find myself doing. (like watching the Today show) [see also, "Hairspray is Hazardous", a few blog posts ago]

So, there we were having a new special ed teacher every single year of school. And, if learning is a bell shaped curve, figuring out Liam is like tackling the Liberty Bell. Or the biggest bell you can think of. 

I love walking in to these teachers on the first day and seeing them bright-eyed and bushy-tailed. Fresh out of grad school, they are ready to conquer the world of autism. It's like they are these young, champion boxers in the corner of the ring, bright red boxing gloves on, with a 'can-do' attitude and a perma-grin smile. 

By week 6, they are beat up, ego-bruised with a white flag, in the corner of the ring, shrugging their shoulders going, "he was much bigger than I thought", breathing heavy, "man, that left hook...woo!"

Now, no one got a literal left hook from Liam. But, he is smart and savvy. He is not to be toyed with. You must stay one to two moves ahead of him if you are going to survive. 

This is the point when Mrs. Vicki and Mrs. Kelley came in. They looked at the stats, the playbooks of all the former teachers and said, "don't worry, we got this!"

They rolled up their sleeves and made things happen. They started thinking not just one or two steps ahead, more like 5 or 6. They never told me this, but I think they would go home at night and think about my child. They never gave up. They saw his potential and took advantage of it. If Liam tried to flank them from the right, they were there ready to take on whatever he brought-never afraid to change tactics mid-stream if they needed. 

These are the people you want on your team. I feel an incredible amount of gratitude that I live in a school system that has people that give a darn. And, if you are reading this, and you don't have that support, I pray that you can find it in other arenas of your life. And, I believe, with all the new education and info on autism that more and more school systems are starting to 'get it'.

I often say Liam's smiles get him services at school. This is Liam wearing Walker's band shako. 

I know I stress this a lot, but support is paramount. These two women have been and continue to be creative in their approach with Liam. It takes smarts and know-how, but it also takes a necessary amount of intuition. 

If you do have a Vicki or Kelley in your life that is passionate about your child and the journey your child is on, I want you to drop whatever you are doing and thank them. This job has a high turnover rate because, quite frankly, it is hard as hell. It is thankless because many times they do not get to see the fruits of their labor until much, much later down the road. (if, at all!)

Worship them, kiss their feet, tell them how much you appreciate the fact that they spend 40 hours of their week with your child. (I will often say if I had the money, they would all get week long cruises to the Caribbean, but, alas, I do not.)

It will give them the much-needed encouragement to get back in that ring again- fresh-faced, gloves polished and tight, ready to tackle this diagnosis head on. 

The Tao of Autism

It has been a few weeks since I posted anything. I have missed it. I don't really know who is reading this (apart from my sweet friends that I force feed my blog upon), but it looks like quite a few of you are checking it out. So...thanks! I know there are a lot of bloggers who are much more proficient at writing than I am, so I am honored that anyone would take time out to read it. I would probably put my 'writing' in air quotes. But, if you do enjoy my blog at all, more than likely it is not because you are an English professor.

I was thinking about all of these years of dealing with autism and the various ways I have managed it. Because that is all we can do. There is no cure- it is all management. And, unfortunately, for both me and Liam, management is not my strong suit. Sometimes, though, I think if I were any more rigid, Liam would begin to expect rigidity all the time. And, let's be honest, most of life is not very rigid. Much of it is out of our control-people, circumstances, whether a football team wins or loses- all of those pesky little things we would love to control, but sadly cannot. 

And, speaking of football teams winning or losing, Liam does not sit well with that little abstract concept. Sure, you might say, "oh my son comes home and cries if his baseball team loses," or, "my husband is in a bad mood if his favorite team loses a game." I would simply look at you and smile and say, well, that's probably a normal reaction to a very common issue. Take your son's crying episode, your husband's bad mood, and go ahead and add an element of nuclear explosion to that mix and that would give a slight hint at what happens when my son's teams lose a game. 

This started very early on in his life. If someone won the Thomas the train race or a quick pick up game of UNO-Beware! This seems to be a fairly common trait in autistic children, and I am not really sure why. My theory is that it stems from the fact that with autism there is not a ton of empathy (scratch that, none!). These kids simply cannot see outside of their needs, wants or desires. Much like a toddler (or teenager) that never fully grows out of it. 

So, if their desire is for their team to win, then it must be so. It doesn't matter how many times you have "explained" this concept. ("We must be patient when our team loses.""What do we say to the other person who wins?" "That's right, we say, Congratulations!") They continue to react the same way. 

I signed Liam up for baseball for a season or two. Thankfully, the first season, his team was really good and tended to win their games. But, his second season...not so much. I decided that a team sport was not for us when he threw a metal water bottle at his teammate's head because the other team scored several runs. Or, yes, the horror and embarrassment I felt when he yelled at me in the stands through the fence in the dugout that he would smash the other team's players with a hammer. 

"Honey!" heh, heh,...(sheepishly looking around at the other parents)..."we don't say that!" "Honestly, I don't know where he picks this stuff up." ...clearing throat..."Hey, I think I smell hot dogs at the concession stand!"

And, this concept doesn't just apply towards the games that my son plays himself. This goes toward the teams he is remotely associated with. My oldest son, Walker, is in the marching band at his high school. The football team has had a less than stellar season, and one particular game was looking pretty ugly by half-time. 

Liam was huddled in an awkward ball in the stadium, wailing, (fairly loudly, I might add) about how he wanted to go home. I was on pins and needles not knowing if he would lash out at me or some innocent by-stander. I feared the worst. And was going to be pretty angry if I was forced to miss my other son's performance at half-time. 

Then it occurred to me! Yes! Just maybe...maybe it would work. Liam loves football. His current favorite obsession is to run in the open field across from our house and make 'long' yardage runs into the endzone. Hours he will spend pretending he is the star player running down the sidelines. (and oddly enough, he wins EVERY time!) 

"Liam, IF you can pull yourself together and behave the rest of the game, THEN I will let you run for touchdowns after the football game on the big field...the REAL field!!"

I waited with bated breath to see if my proposal would work. His teary eyes looked at me in disbelief. "What is this?" he seemed to ask with his eyes. 

"Yes, the team will leave the field and you can run down the sidelines ALL by yourself."

It worked!!! He sat up, breathed a deep breath, and held himself together for another solid hour and a half. 

I had used two key words that worked- 'if' and 'then'. Two of the most powerful words in the autism world. They are indisputable. They are black and white. If you do this, then you will get that. And, if the 'then' is motivating enough, it works like a charm. It is the Tao of autism. 

"If/then" was introduced to me several years ago and changed my life. I had to at first give myself the permission to use them and not believe that I was somehow bribing my child into good behavior. But, then I realized, what the freak do I care?! I want good behavior. I want sanity. And, today, this is what works. 

The football team took a hard couple of licks that night. But, not us. We won. I got to win, and Liam got to win. And, IF I could get Liam to do what I asked for just this once, THEN it would give me the hope to wake up and do it all over again the next day. 

Love the 'if/then', embrace the 'if/then', make friends with it, and you can win too.

(Here is Liam's triumphant victory!)