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.

The Kindness of a Stranger

To the Lady on "M" Street:

I drove by your street again today. And just like every other time I drive by there, I thought about you. It's been almost 3 years since that day. A day that stays with me. 

We were on the way to the hospital for yet another abdominal x-ray when it happened. The Boy got a bloody nose. At all of 5 years old, with numerous special needs and very little verbal skills; bloody noses freak him out. Completely. Freak. Him. Out.

I had to pull over, and chance would have it that I stopped in front of your house. We got out of the car, The Boy screaming bloody murder for all the world to hear. He's running up and down the street. I'm trying to grab him, hold him. He's hitting and kicking trying to get away. He's splitting blood everywhere. I'm covered in it, he's covered in it, its getting all over the sidewalk. I have no idea what it looked like to a passer by, but I'm sure it was a sight to make anyone pause.

I didn't even notice when you came out of your house. I have no idea how long you watched us. I was a little preoccupied.  I didn't notice you until you gently touched my shoulder. You quietly asked if there was anything you could do to help. Was there someone you could call for me. Nearly in tears myself and using all my energy to try and calm my child, I could only shake my head. And I thought you left.

But you returned just a few minutes later with a couple of damp towels. You quietly handed them to me and stepped back. The Boy had finally stopped kicking and hitting.  He was sitting on my lap, still crying, still spitting blood; but he let me place a damp towel on his face. A while later when the bleeding had stopped, you were back with 2 glasses of cold water. And still, you said nothing, asked nothing. You simply did what you could to help, quietly, unassuming.

I have no idea what you thought. I sometimes wonder. Here is this kid who looks like he's 7 or 8 years old in a complete meltdown panic, fighting the women he's with, blood going everywhere. I'm surprised you didn't call the police. But I'm thankful you didn't.

We spoke very few words. When The Boy was calm enough I put him back in the car. I turned and looked at you embarrassed, exhausted, holding bloody towels. You smiled and said keep them, you may need them on your way home. And you slowly turned with the empty glasses in your hands and returned to your house. I think I mumbled thank you before I turned to get in my car. 

Later at home I washed your towels with the intent of returning them to you. But I couldn't get the bloody, grimy stains out even with repeated washings and bleach. So I gave up. I never went back to your house. I never truly thanked you for your kindness. That part sits heavy on my heart. You have no idea how much your kindness meant to me. You never asked any questions, you never passed any judgment, you simply tried to help. And that spoke volumes to me. The world could learn a few lessons from you, me included.

And please know this, every time I drive by your street I whisper thank you. 
 

Placement

Its that time of year. We are starting the discussions of Bambam's placement next year. Mr. Fixit and I actually started the discussion this year. We've begun to wonder if Bambam's current placement is the best environment for him to learn and grow. We've been discussing it at home for months. And have now started discussing it with Bambam's educational team.

We love our neighborhood school. And they have been wonderful to Bambam. All of them. The teachers, his aids, the kids, the office staff, the librarian, even the janitor. Every single person there. He couldn't be in a place where he is more accepted, included, loved and even celebrated. Except maybe at home. 

But here's the thing. He's now 8, finishing up 2nd grade. Well, his version anyway. And, he's yards behind. He is learning; always plugging ahead in his own way, in his own time. But so are all the other kids. And it's obvious he isn't going to catch up any time soon. Maybe never. His is a different path. And that's OK. We need to respect that, embrace it even. 

3rd grade is a pretty big jump. All of a sudden the kids are in a more academic environment with far more self study. They need to be self starters. Gone are the story times and longer recesses. Gone are the classroom buddies from the older classes helping them with projects. Now they are the older class with kindergarten buddies to help. And honestly, Bambam is just not ready for that. Any of it. 

While his classmates are reading small chapter books, he is learning to read sight words and short sentences. His classmates are learning multiplication tables and he's still correspondence counting to 10 and sorting like objects. They are writing in daily journals and he's learning to write his name. Self starter is not a word I would use to describe his learning style. Unless it involves a ball or an animal, his attention span is about 11 minutes. None of this lends itself very successfully to 3rd grade in a typical classroom. We've decided its time to look at all of our options. 

We could continue on our current path. Assign him to a home classroom with a 1:1. Continue with the individualized education plan that includes his own academic goals, along with social, adaptive, speech, OT, and PT goals. But here is what happens. He gets overwhelmed with sensory input in the classroom. So he and his aid have a cubicle in the LRC where he spends 75-80% of his day doing 1:1 work with her. Isolated from all the other kids. Isolated from everyone. And I'm not sure this is what's best for him. It is the best the school could provide under the current conditions, and we are ever so thankful for that. But is it what is best for Bambam? I'm not so sure.

I've been watching Bambam at school, paying close attention to his non-verbal queues. And its very clear to me that he is starting to see the differences between his classmates and himself. Until now, he appeared to not notice. Whether this is true or not, I don't know. But now, I see hints of him seeing it, becoming aware of it. He wants to do what his classmates are doing, but he can't. He notices when someone is watching or staring at him. He may not totally understand all of the reasons why, but he's noticing that it is different. And in some ways it breaks my heart. Ignorance can be bliss. 

But if he's noticing, I think it is critical that he know there are other kids like him. He needs to find "his people". He needs "neurological peers". He also need "neuro-typical peers". I think both are critical to his growth and well being. He needs to know he is not alone, but he also needs to learn how to function in a world full of "neuro-typical people". Because that is what we have. The truth is, he will always have to interact with NT people. Hopefully he will also be around those similar to him, others on the spectrum.

And so, we are going to visit the self contained classroom in our district. This has been a major evolution for me. In the past I was adamantly opposed to placing him in the self contained classroom. And now I'm asking to see it. Our growth as humans never ends, but that is a thought for another day. 

Tomorrow morning at 9:00 am, I will be sitting in the back of the self contained K-3 classroom located in another school. I'm both curious and terrified. I do not know what I will find there. I'm hoping to find children with varying differences but still similar to Bambam. I'm hoping to find a teacher and a whole slew of aids who are knowledgeable, patient, understanding, kind, encouraging, and loving. I'm hoping to find NT kids in the other classrooms that are accepting and inclusive but more importantly, kind and caring. I'm hoping to find administrators who "get it". I'm hoping.

But even if we find the most wonderful, best of all possible situations in that self contained classroom in the other school, we are still faced with a very difficult decision. Bambam loves his school. He loves his classmates. He talks about his friends constantly. He has play dates with them, goes to their birthday parties and they come to his. How can we pull him out of his current school where he's been in class with the these kids for 3 years? Kids who know him, understand him, know how to interact with him, include him, genuinely like him. And it is not just the kids in his class. It is the entire school. They are like part of our extended family. I wish the self contained classroom was in his current school.

These decisions are so hard. We so desperately want to make the right decision for our sweet boy. Sometimes I wish he came with an instruction guide. 

Community

I sat with another parent at Special Olympics basketball practice last night and had a nice visit. I've sat with them before, but we don't know each other well and the conversation has always been of the "acquaintance" variety. You know what I mean, how are you, how are your kids, do you have fun plans for the weekend, that sort of thing.

But last night, it became more than that. It became community. A gathering of those with similar stories, sharing and supporting each other. His daughter, a 10 year old with Downs, is a 5th grader at Bambam's school. The kids know each other well and really enjoy each other's company. They spend time together every day at school in the LRC (Learning Resource Center). All the way to SO basketball, Bambam gleefully repeats "M will be there. M is on her way. I will play with M." As soon as the last one arrives at basketball, they run to each other and hug. They clearly are friends. 

But as for us parents, we seem to have kept a small distance. At least until last night. When we began to share stories that only special needs parents have. You know, those of the "pick up your 8 year old who is melting down in the middle of the furniture store and run for the door" sort of variety. The "I yelled at the janitor who made a comment about my kids behavior" kind of stories. The "if the school stops me at pick up one more time to tell me about another behavior mishap I will loose it" kind. The "yes, my 10 year old is still wearing a life vest in the pool, you staring is not making it any easier" sort of thing. The kind that special needs parents experience almost every damn day.

That's not to say that those moments don't occur when raising typical kids. I know they do. I'm raising (or have almost raised) 2 of those also. But its different. It just is. And unless you are raising a special needs child, its hard to really understand how different it is. 

I have great support. Friends, family on both sides, therapists and teachers who are so much more than that. And, I have my sister who is always, ALWAYS there for me. Any time of the day or night she is just a text or phone call away. She will do what ever she can to help me at any time. I know this. I feel this all the way to my bones. She truly loves me and would do anything for me. And I love her to eternity for this. 

But still, as much as she wants to and tries to, she really does not get it. Yes, she always listens as long as I need her to, she never judges, she is always supportive and positive. She sympathizes, and empathizes, and truly tries and wants to understand. I know she does. But how can she? She has never walked a path anywhere near similar to this one. How can she know what its like to have the responsibility of raising a special needs child 24/7. The answer is that she can't. There is no shame or fault in that. That is just the way it is. She does as much for me as she humanly can and I am so grateful and in debt to her for it.

But community, the gathering of those with similar stories, that is what I need sometimes. I cannot go down this road without it. Someone who with just one look can say I get it. I really get it. I've been there. No explanations or excuses needed. In fact, you may not even need to finish the sentence or thought, they could do it for you. They know it, experience it, live it. And I feel myself exhale, relax, feel like I'm coming home.

Progress

We were again at the Fun House last weekend. It is our respite place. The place where we can breath deeply and feel the stress and tension leave our bodies, our minds, our family. A place where we can all just be.

So its natural that in this place we might occasionally stretch Bambam. Pull him out of his comfortable zone and work on situations that are uncomfortable for him. This weekend it was eating out at a restaurant. 

Eating out has not always been an issue for him. In fact, when he was younger (a preschooler) we used to eat out on occasion. We had a favorite pasta restaurant that we would visit maybe once every other month. Eating out has never been a frequent occurrence for us. But he liked the pasta restaurant and usually did very well there. Until the incident.

The last time we ate there, probably 2 or 3 years ago, they sat us back by the open kitchen. This was a new experience. Usually we sat up towards the front windows. As soon as we sat down I could see Bambam's anxiety rising. At that point, I should have asked to be moved. Hind sight is always 20/20. With lots of noise and activity in the kitchen, he was on edge. Then, as soon as we ordered, a flame shot up over the half wall with a loud searing noise. And it was all over. Instant meltdown. He was yelling and flailing and trying to claw his way inside my shirt. There was no calming him down without leaving. So I took him outside while Mr. Fixit changed our orders to go. We haven't been back since. In fact, every time we even drive by Bambam says loundly "No go to noodle restaurant!". Years later. And he has been unwilling to try any other restaurant. Until this past weekend.

We were in town running errands and decided to try lunch at a pub. It was time. We had the iPad, we figured they had wifi and Bambam could entertain himself. So with deep breaths, we ventured in. And wouldn't you know it, they sat us back by the open kitchen! As soon as the hostes left, Bambam looks at the kitchen and then looks at me with fear in his eyes and says "no sit here". Good job self advocating kiddo! So I went back up front, quietly explained that my son is autistic and the kitchen is causing him some anxiety, could we please move up to the front by the windows. They were more than accommodating. Once we sat at our new table, Bambam visibly relaxed. Unfortunately, there was no wifi. But he entertained himself coloring the kids menu and we talked about what he wanted to order for lunch.

Imagine my surprise when our server arrived at our table and asked what Bambam would like for lunch and he answered "pizza." He even answered all the followup questions: What kind, pepperoni; what would you like to drink, apple juice. Unprompted, my son answered questions for a stranger. On topic. With the correct answers. In a stressful environment. We were stunned.

It was a great experience. He didn't actually eat his lunch. At least not at the restaurant. He ate it later back at the fun house. And he did get up and go upstairs to the empty mezzanine several times. But he was not disruptive, he handled his anxiety well, and the rest of us were able to eat a nice lunch. 

Progress. That's what we call it. It may be small, baby steps. But it is still progress. Learning to navigate this big, assaulting world that wasn't made for him. And I revel in each and every one of the baby steps, no matter how small. I surround myself in them, swim in them, soak them in. I hang on to them, pull them out during the difficult times. Always, always reminding myself to NEVER count him out. It is all in his own time, in his own way.

Patience and Understanding

I've waited a week to write about this. My emotions are still raw. I'm trying so hard to practice the patience and understanding I want others to give Bambam, but honestly I'm struggling with it.

About a week ago, one of my "friends" approached me to discuss an incident that occurred at her house 2 months ago. We were at a gathering that included kids, about 8 total ranging in age from 7 to 13. As she told it, the kids were all in the room above the garage (with no adults present) when Bambam started throwing things. So one of the 13 year old girls thought it was a good idea to LOCK HIM THE BATHROOM. At that point, one of the other 13 year old girls tackled her in order to prevent that from happening (I love that child). As you can imagine, a whole fiasco ensued.

So my "friend" said that basically Bambam, wasn't welcome in her home anymore as he caused this incident. Um WHAT?!?! I have sooooo many issues with this I don't even know where to begin.  

The most obvious issue is since when is the victim of a bullying incident the one to blame? And make no mistake this is a severe case of bullying. There is NEVER A REASON TO LOCK A 7 YEAR OLD SPECIAL NEEDS CHILD IN THE BATHROOM. Adults go to jail for that shit. YES, I'm mad.

I gave her this analogy: if there is a bullying incident at a school and another child stops the bully with violence, the school would never call the parent of the bullying victim and tell them he wasn't welcome at their school anymore as he caused the violence. It is ridiculous. Not to mention that in this case the victim is a 7 year old, with significant developmental delays. And the other kids are 13. Really? Your going to blame the weakest link? The one who has no way to defend himself? I am so disappointed.

She then suggested that we get a sitter and leave Bambam at home whenever we have gatherings that include kids. Um yah, because social isolation of anyone different is always a good answer. I think that has been tried a few times over the years. Most of humanity usually has a problem with it.

Look, I get that including Bambam is not always easy. He's big, and noisy, and physical, and can easily get disregulated and loose control of his body. Words often fail him so he uses actions. I get it more than anyone else, I live with him 24/7. I understand that we are asking a lot of our friends, and our friends kids to include him. I know that it takes a healthy amount of patience and understanding to to do so. And maybe we're asking to much, I don't know. But the answer is not excluding him. It just isn't.

Bambam loves other kids. He asks to play with kids every day. When we tell him we are going somewhere, his first comment is "Kids will be there? I play with kids?". He would never purposely hurt another child. There could be a number of reasons why he was throwing (although this part of the story is inconsistent between kids, some say he wasn't out of control at all) but it would never be with the intent of harm. And we've told all the other kids  that if Bambam is struggling then they should come get me or Mr. Fixit. Its our job to monitor him. We are happy to stay in the same room with him when ever it is necessary. Or temporarily remove him from a situation that is getting overwhelming for him. There are many positive ways this could have been handled. And yet it wasn't.

So here I sit not really knowing what path to take. I'm mad and sad and disappointed and discouraged. Because if I can't ask my "friends" to offer the patience, understanding, and accommodations necessary to include Bambam, then how can I ever expect anyone else too? Sigh.

Sing a Little Song

Bambam has started singing. This is a new skill for him. It started within the past year with the Happy Birthday song. Which makes total sense because birthdays are one of his most favorite things. Doesn't matter whose it is, he just loves candles and cake and presents...and now singing Happy Birthday. Which he sings to someone (be it alive or stuffed, human or animal) at least once a day. It is awesome.

Within the past couple of months, his song repertoire has been expanding. He first added Old MacDonald and Baba Black sheep (yes, its a clear animal theme). But most recently he's added Frosty the Snowman and Santa Clause is Coming to Town. His versions are not exact replicas of the original, but they are certainly close enough for anyone to understand what he is singing. Seriously love it!

The only little issue with all this singing is that he wants me to sing with him. I. Can. Not. Sing. As in, I sound like a sick cow. Lets just say that my talents lie elsewhere. Don't get me wrong, I love to sing. When in the car alone I sing at the top of my lungs along with the radio. And I have a great time doing it. But any singing in public ended for me in Junior High School. (I know I'm dating myself, they call it middle school now.) I remember it clearly. The first time we were required to "try out" for choir. I didn't make it. Yes, lots of teenage girl drama followed. But eventually I came to grips with the fact that my singing was limited to in the shower or in the car alone. 

And then along came Bambam. My boy who had no words until he was over 3. Who works so hard on any and all verbal communication. Who I thought would never sing a single song. (Yes, I've learned my lesson about the word "never". Over and over and over again.) And when that sweet, angelic face looks at me and says "wanna sing too?" Well, there is nothing else to do but sing right along with him. No matter where we are. 

So, if you are in the grocery store, or at the park, or just walking down the street and you hear something that sounds a little like a dieing cow trying to sing Frosty the Snowman, well, that's probably me. Just one blessed mama enjoying a festive song with her beautiful boy.