We Survived...I Think

I don't know about anyone else, but I am ready to be done with 2014 and start fresh and new with 2015. I hate to curse myself by saying it out loud, but I think we just may have survived it. It has been a rough year, especially the fall/early winter.

Bambam has been just awful since September. I know that I'm not supposed to admit that and say it out loud, but there it is. He has tried my patience and worn out every last one of my nerves. And I mean Every. Last. One. And I can't help thinking, if its been this bad for me then how much more immensely difficult has it been for him. Because I know behavior is communication, so all his miserably awful behavior was communicating to me how difficult its been for him. When in the midst of it, it is sometimes difficult to remember that. All I can see is a whiny, clingy, out of control child. And I have to remind myself to look for the reasons behind the behavior.

If I'm honest, it probably all started back in the fall of 2013 when Miracle Boy left for college. This was a huge change for Bambam, "Brother" was gone. Change is difficult for Bambam. He asked daily, sometimes hourly, where's Brother? When Brother home? I see Brother? He missed him terribly. And then Brother came home in November. Just to leave again in February, and this time he hasn't returned home. At least not to live. He visits occasionally, but he no longer lives at home. It is a new normal, for everyone.

Then, 2 weeks after school started in September, we moved Bambam to a new school. Everything he'd known about school for the past 3 years, gone. A whole new school, new building, new teachers, new aids, new SLP, new OT, new PT, new peers both special needs and typically developing. Everything was new. Have I mentioned that change is really hard for him? There were many anxious mornings, but we were muddling through. 

Then the days started getting shorter and the time changed. Talk to any autism parent, we HATE the time change. It totally messes with our kids. Bambam has an incredible internal clock. Since he was a tiny infant you could set your watch by when he woke, slept, ate, etc. Try telling a kid like that, with limited verbal communication skills and no time telling skills, they have to change all of their internal times by an hour overnight. To say it totally messes him up is an understatement. And we started having more anxiety and some sleepless nights and some new fears.

Then the illnesses started. I'm not sure what it was, perhaps a new school means a new germ pool (are they school specific?). But my kid who has always been very healthy with rarely even a sniffle started to come down with one thing after another. Sinus infection, noro virus, ear infection, noro virus again (lucky us), another ear infection. It seemed like he was rarely healthy. And the clingyness began. He wouldn't let me out of his sight. All of his whiny, clingy, miserable little self constantly around me.

Then, The Quiet One moved out (and into Miracle Boy's apartment, but that is another post) mid-October. And all of a sudden, Bambam was alone at home, no brothers. I did mention change is really, really, really hard for him, right? I think this year has had the perfect storm of changes for Bambam. He was beside himself, inconsolable. At times he would just start crying, no obvious reason.

By the end of October he was sleeping maybe 3 or 4 hours a night, if that. He had become fearful of the dark, any noise he couldn't "see", being separated from me, being in his own bed or even his own room, wasn't eating, had several accidents at school... The list could go on and on. He actually cried when I put him on the school bus, clinging to me. He's never cried on the school bus, he loves it. We were almost back to the days of his toddler or preschool years where he thought he was my appendage. Seriously, he never wandered more than 18 inches from me, followed me from room to room, sat outside the bathroom door talking to me the whole time (mom, you there? you OK? almost done? mom?). If I did have to leave in the evening for any reason, he cried the whole time I was gone. I'm sure that made Mr. Fixit feel wonderful. In a word, it was dreadful. 

And just for good measure, at the end of the year we throw in the holidays. All the decorations in the house changed, a tree in the house, visitors in and out all the time, going to visit relatives constantly, different food and treats, and no school for 2 weeks. The holidays are difficult in a good year. And this was not a good year. This year they were nearly impossible. We never did decorate our tree. Mr. Fixit put lights on it the day we brought it home and that was it. We had a naked lit tree. That fell over 3 days before Christmas. Breaking the lights. It seemed like a fitting punctuation mark to our year. 

But I am now putting that all behind us. With the start of the New Year Bambam is finally healthy, back to running gleefully to the school bus and eating us out of house and home. These are good signs. Here's hoping for a great 2015!

Never, For ANY Reason

People have asked about my thoughts on London McCabe's death. I've never written about any of the well publicized incidents of autistic children being killed by caregivers. There are lots of bloggers out there who cover the entire gamut of reactions when these terrible incidents happen. I really don't need to throw my hat in the ring too. But, just because I've been silent doesn't mean I don't have a reaction. Believe me I do, its like a punch in the gut. And my heart aches. For everyone involved.

I look at London's school picture with his blonde hair and blue eyes and pilot's hat and impish grin, and I see a child that could be my sweet boy's twin. The resemblance is not lost on me. My own impish, blonde, blue eyed boy loves airplanes too. And my heart aches even more.

As a fellow autism momma, I get it. I get how hard it can be. I know how isolating and overwhelming it can be when you are dragging your 4.5' tall, 75 lb boy out of the pumpkin patch (or the store, or the restaurant, or the park, or the birthday party, or...) where he just completely lost control. I have suffered the bruises from his kicks and punches while trying to get home where he can find his calm. I know how humiliating it can feel when everyone, and I mean EVERYONE, is watching while this takes place. And I also hear the whispers: What is wrong with that boy, He's too old to act like that, He needs discipline... And I too want to scream to the world: He's not having a temper tantrum, he's melting down because it all just became too much and he cannot process it. He's autistic, not spoiled! And my heart aches.

I've been there at 2:00 am when he is sick, but doesn't understand body queues and doesn't have the language to say I'm going to be sick. I know how tired you are while you clean up vomit yet again from his bedding, or the just cleaned carpets, or even from all over the toilet when you actually did manage to get him into the bathroom. I know the feeling of vomit running down your shirt, in your hair, all over you and him as you try to show him how to lean over the toilet. But he fights you because this feeling of stuff coming up from his stomach is scarey and he doesn't understand and he's in a panic. So he fights you, trying to run away. All while still vomiting. IT IS EVERYWHERE. I've felt the exhaustion of going through it several times a night, for several nights. The feeling of defeat, that you just cannot possibly do it any more. And yet you know tomorrow is another day you have to face. And my whole body aches along with my heart.

I know what it is like to be so completely exhausted that you can no longer think straight and you probably shouldn't be driving your son to speech therapy because its no longer safe. I've lived through the months of him not sleeping for more than 3 hours a night. I've spent many nights with him in my bed, his knees in my back, his toes wedged into my calves so hard it leaves bruises. I've woken up to bloody noses from his hand flying out and hitting me in the face while he sleeps. I've tried sleeping on the 6 inches of real estate at the very edge of the bed, afraid to move him, afraid to go find somewhere else to sleep because he's finally asleep. And under no circumstances will I do ANYTHING that could possibly wake him up. So I lay there awake, with an aching heart.

I have had the days where I stand under the hot stream of water in the shower and sob. Heart wrenching, soul splitting sobs. The kind that drain every last ounce of energy you had left, if there was any. And you pray the sound of the water covers the sounds of your sobs.

I've been there, know the feeling of just wanting to crawl into bed and shut everything out and sleep hibernate for weeks on end. Because there are days when the complete exhaustion, overwhelming responsibility, endless repeat of the same day after day after day is more than you can bear and it all feels so futile. Please believe me when I say that I have been there.

But for as dark as those moments, hours, days, or even weeks can be; it is never, for ANY reason an excuse to cause harm. EVER. That child, that precious child, is a human being just like you or I. He lives and breathes and loves and laughs and grows. Perhaps it looks different, perhaps its not the way you or I do it. But its there, I promise you. And its worth looking for. And its worth watching. And its worth encouraging. He is worth it. Please know, he is worth it.

Just a Few Hours

Last weekend Bambam participated in the Youth Games. This is a sports clinic hosted by a corporate giant in the city almost 2 hours away from us. It is an introduction to Special Olympics. And although Bambam already participates in Special Olympics, I am always on the look out for events in which he can participate. They offered clinics in basketball, soccer, field games, and golf. Given the choices, Bambam picked golf.

With over 500 participants, their parents, volunteers, and the organizers; it was quite the organized chaos. But the Polar Bear from the plunge was there to comfort all the participants. I do not pretend to understand why seeing pop up canopies causes anxiety but a grown up in a creepy bear suit doesn't. Seriously, I do not get it. But I was grateful the bear was there as it calmed Bambam and took his mind off all the chaos around him. After the opening ceremonies, we went to find his golf group.

As I handed Bambam off to his group leaders I left them with a piece of advise: "When you give him a golf club, stand back. He swings hard and fast." They chuckled with an OK. But I was serious. That child is all about power, he has absolutely no finesse. I watched him walk off with the other four 8 year olds.

Their group started at putting. Bambam has absolutely no use for putting. You can imagine how thrilled he was. But with constant reminders to use small swings, he did pretty good; actually making several puts. But, he was super excited to move on to chipping.

Being the only left handed swinger, Bambam had a station all to himself. The volunteer manning that station put a ball on the mat, handed Bambam a club and asked him if he could hit the ball. Bambam let loose on that ball. He hit a perfect chip shot almost 50 yards. Only problem was that the field was only about 50 yards wide, with another group of kids on the other side hitting our direction. An immediate chorus of Fore!, Wow!, Holy Sh*t! rang out. And a small crowd gathered behind Bambam.

So once again there were lots of reminders to use small swings. Bambam hit several chip shots into the hoola hoops laying on the ground about 10 yards out. But every few hits he would get really excited and just let one go. Each time the chorus would ring out and the crowd would grow. Fathers saying "I wish I had a swing like that" and volunteers congratulating Bambam on a great hit. And Bambam started to shine.

When we moved to the other side for the final station the crowd followed him. I warned the volunteer that this was the kid who was chipping the ball from the other side clear over to this side. She nodded, and said they were using "low flight balls" so it would be fine. After the lesson, she gave him a club and let him hit. The ball flew over the field to the pop up canopy where parents were sitting. It actually bounced off the canopy. I'm not sure what a "low flight ball" is supposed to do, but that ball flew just like a regular ball. After telling him what a great hit that was and giving him 20 points for hitting the canopy, the volunteer told him he had to use a plastic club and tennis balls so no one would get hurt. It didn't slow him down. He continued to hit with his whole being, beaming everytime a tennis ball went flying. It was a great day for him.

Later I was asked why I was willing to drive over 3 hours for Bambam to golf for about two and a half hours. And here's the thing. That kid struggles every day. He struggles at school learning to write his name with fingers that don't cooperate. He struggles to make himself understood when he doesn't have the words. He struggles in the grocery store with lights that are too bright and noises too loud. He struggles every day. So if driving for 3 hours gives him the opportunity to shine for a few hours, to excell at something and be a star; I will absolutely do it. Every kid deserves that opportunity. Every kid should have the chance to feel good about themselves and what they CAN do. Even if its just for a few hours.

An Open Letter to Our Amazing Neighborhood School

To our amazing neighborhood school family:

After much discussion and deliberation, we have made the very difficult decision to move Bambam to another school with a dedicated special education classroom. As most of you know, Bambam has varied and complicated special needs. We have high hopes that his many needs will be sucsessfully met in his new school. But that didn't make this decision an easy one.

This decision was difficult for many reasons; not the least of which was the thought of leaving this amazing school. You have been his school family for 3 years. During that time he has been accepted, included, respected, and loved by teachers, administrators, support staff, students and parents alike. I cannot imagine a more positive, inclusive environment in any school anywhere.

The student population has been wonderful. Bambam has not been simply tolerated; after all, who really has a goal of being tolerated? He was accepted. His classmates included him when they could, helped him when he needed it, celebrated his accomplishments, watched out for him, and most importantly became his friends. Bambam talks about each and every one of them all the time. 

Some students have been in class with Bambam for 3 years, some for 2, some for 1. Some just passed him in the hallway or saw him in the cafeteria or on the playground. It didn't seem to matter. It appears they all know who he is. When we are in town or at the pool inevitably a child will come up and talk to Bambam. I sometimes do not know or recognize them. But they quickly tell me they go to school with him. Kids from kindergarten to 5th grade, they all seem genuinely happy to see him. The world could learn a few things from our little neighborhood school.

And so it is with a heavy heart that we are now closing this chapter and starting a new one. Please know that we could never thank you enough for all each of you have done for Bambam. I only hope that you too have gained something from the experience of knowing our sweet boy. 

And, instead of saying goodbye, we will say that we hope to see you around town.

September

I didn't write much in September. September was a hard month. Bambam had a tough time adjusting to the transition to school. I was both surprised and a little disappointed by this. I know I shouldn't be. But I'm human, and disappointment is a natural human emotion. 

You see, Bambam had such a stellar summer. I mean he was a rock star. He went to day camp, he fully potty trained, he made significant gains in language, his imaginative play exploded. I could go on and on, but you get the idea. It was a great summer. The best he's ever had.

So when we got ready to transition into school, and he was so excited for school to start, we naturally assumed he would continue to be that rock star. Contributing to our confidence was the fact that his school does a 1-2 loop, meaning he would be in the same classroom with the same teacher and the same kids as last year. No changes. And he would have the same 1 to 1 aid. It was a recipe for success. Or so we thought.

What we failed to recognize was that the little adjustments (at least we thought they were little) we made to his daily schedule would really throw him off, causing major anxiety and frustration. The first of which was lengthening his day to the full school day. 

Last year, he left school an hour early every day. This year he stays until 2:45. But every day at 1:45 he looks at his aid, the amazing "E", and says "home time now". His internal clock is incredible. He cannot tell time. At least, I don't think he can. He can just now recognize and name numbers 1-9. But he's had an amazing internal clock since the day he was born. As an infant, you could set your watch by his sleeping and feeding times. He was always spot on. So now, every day at 1:45 he thinks its time to go home. And "E" is struggling to convince him that its still school time. He is staying, but he's done with working for the day. On Tuesdays and Thursdays, they have PE at the end of the day, those days go OK. My athletic little guy shines at PE. Its the one place where he really fits in, where he actually outshines many of his peers. He LOVES PE. 

But on Mondays and Wednesdays they have Music and Art respectively at the end of the day. And these are not going so well. With very (and I can't stress very enough) delayed fine motor skills, Art is a huge frustration for him under the best of circumstances.  These are not the best of circumstances. He has ripped a project, thrown a project, painted his aid (and himself), and generally been wreaking havoc all over the art room. He's had to leave the art room. I've been called to the school. More than once. 

In addition, more is being asked of Bambam. He is having more structured schoolwork time, we call it table time. He HATES table time. Sitting for more than 30 seconds is a challenge for him. But, we decided it was time to do just that, challenge him a little more. He must complete 3 academic tasks, then gets a reward of his choice. Did I mention Bambam hates table time? At one point his frustration escalated to a chair being thrown into the smart board. And me being called to the school yet again.

This was not the start to school that I had envisioned.

And there it is. This was not what I had anticipated, what I thought was going to happen. It was not meeting my expectations. Who said I get to choose how things are going to go? I need to learn to let go of my expectations. Lesson learned.

Update, September 2014

I wrote this last year and never published it. I'm not sure why. But I am now. Because we are having the same sort of start to this school year. Transitions are so very hard on our spectrum kiddos. And this year he does have a new classroom and a new teacher and new classmates. My boy who every day this summer has asked to go to school is now asking every morning to go to camp. Its going to be a long September. Sigh.

The Race

The other day I wrote about how a local sporting event was awesome about making accommodations so Bambam could participate in a kids triathlon. But I didn't write about the actual race. The race coordinator and I came up with several great accommodations that I thought would work for him. They allowed us early access to the course so Bambam could go through it before the race. Bambam was allowed to start after all the other participants so the crowds would have a chance to die down. He was allowed to scooter instead of bike as he still cannot pedal a bike. The MC would stop and the music would be turned off before he came to the starting line. And I would be allowed to shadow him on the course as support. It seemed like it just might work.

However, as many of you with ASD kids know, we still didn't know if Bambam would follow through and actually do the race. He loves sports of any kind. He's very athletic and participates in several adaptive sports programs. But this would be his first experience in a typical sporting event since the disaster that was AYSO soccer in kindergarten. (I should write a post about that, but its still too traumatic for everyone involved.)

When we arrived at the event there were over 400 kids there to participate! Plus all their adults and the loud music and the MC.... Bambam's anxiety immediately kicked into high gear and he froze. Then he started his mantra of "I go home, I go home now, I. Go. Home. NOW!" My heart sank. I knew how badly he wanted to do this. How much he would get out of it if we could just get him past the anxiety.

Knowing he wouldn't start for well over an hour (they start 2 at a time; 400 kids), we opted to wait (read hide out) in the adjacent building where it was quiet and we had a front row seat to the start. At first he spent his time on the other side of the room, occasionally even going outside on the other side away from the event. But slowly over time he began to occasionally wonder by the window and watch. By the time the last participants were getting ready to take off he was not only outside watching them but he was dancing around to the music and asking when it was his turn! We got in line.

When he got to the front of the line he hesitated. I had to encourage him to go. And then he did, running to the inflatable obstacle course and jumping in. As he was going through it, he would stop to bounce. At that point I knew he was going to do this race his way, a way that allowed him to mitigate his sensory and anxiety issues. Bouncing helps to ground him when he's feeling overwhelmed.  So he bounced like Tigger all the way through, taking his own sweet time. It was beautifully him.

He hesitated again before jumping into the pools to "splash". But once in, boy did he splash. He loves water and splashing and he made the most of his time in the pools. True to form, he again hesitated at the transition to the scooter. But with some prompting, he took off. And he took off fast; I struggled to keep up with him as I shadowed him along the course. He came to a complete stop twice while on his scooter; I almost ran into him the first time it was so sudden.  A group of people along the course were cheering, as most people would do. It was too much for him. He stopped and said "no clapping, too noisy". I simply looked at the spectators with a smile and shrugged my shoulders. I no longer feel the need to explain to every casual person we happen to pass. They stopped clapping and off he went flying by some of the other participants he had caught up to.

At the transition to the run (known as T2 in the triathlon world) Daddy was waiting to take his scooter so he could run. Only problem was that Bambam refused to run without Daddy. Or me. So with a shrug at each other and the race officials the three of us took off hand in hand in hand. With lots encouragement, and the enticement of a medal, we crossed the finish line together. And I'm not ashamed to admit I had tears in my eyes.

I was so damn proud of that kid. I know how much he wanted to do his own race. And I also know how motivated he is by medals. And this was a big one. But I also know how difficult this was for him. What an assault it was on his senses. How he had to fight with everything he has just to be on that race course. And how much it took out of him. With his medal around his neck, he retreated to his room with his iPad to recover. But by the next day he was already talking about his next race. Score one for Bambam.

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Just Ask

For the past 10 years our family has been attending and participating in a huge sports festival at the fun house. It all started 10 years ago, before we even owned the fun house. At that time my running partner and I decided to run a half marathon. So we went looking for one and found this one. We signed up and began to train.

When we arrived at the resort location of the run, we discovered that it was way more than just a half and full marathon run. It was an entire 3 day sports event including 3 different events for kids, the half and full marathons, long course and Olympic duathlons and triathlons, and a 10k and 5k. There was an extensive sports expo, booths and food and music and loads of fun.

We immediately signed our kids up for the kids triathlon called the "splash, pedal n dash". It was a fun event where the kids climbed through an inflatable obstacle course, ran through 2 kiddie pools (the splash), rode their bikes for 1/2mike (the pedal), then ran 1/4 mile (the dash) to cross the same finish line as all the other athletes. It was complete with timing chips, finisher medals, and official results. The older boys loved it.

We bought the fun house the next year and this sports event weekend became an annual tradition. I've run the half marathon, 10k and 5k at different times over the years. Mr. Fix it has done the 5k or 10k. The older boys did the splash, pedal, dash until they aged out at 13. Then they ran the 5k a few times before moving on to the duathlon.

Bambam has grown up watching everyone participate in races at this event. Except him. Last year he starting asking about racing himself. But with the crowds and the loud music and the MC and the cheering all along the routes, we were not convinced he would actually do it. Its been hard enough for him to just be at the finish line to watch family members cross. With his sensory issues, this takes everything he has.

But he kept asking to run a race. So, with nothing to loose, I emailed the organizers of the event and asked if they would consider a special needs division in any of the kids events. I explained that as a family we had been participating for the past 10 years and that now our 8 year old autistic son was asking if he could race too.

I really didn't expect much but thought I could plant a seed. Well, I got an immediate response which said that they didn't have time to consider a special needs division for this year, but what would it take for Bambam to be able to participate. I was pleasantly shocked. What followed was a series of emails and phone calls which resulted in a plan of accommodations we thought just might work.

I've learned many things from my special boy. One is that asking often leads to positive results. And even if it doesn't, you are no worse off than before you asked, what is there to loose? Speak up. Ask for what you or your loved one needs. I've found that more often than not people, organizations, businesses are more than happy to make reasonable accommodations. And for that I am thankful. So hats off to the sporting event that helped my son participate in his first race.