The Little Things

I haven't written anything in a couple of months. Not because I don't have anything to write about, but because I just haven't had time to sit at the computer. But I've had lots of posts rolling around in my head. Its time to start getting them out.

Late October through early January is really busy for us. It starts with Halloween and Mr. Fixit's birthday. On the same day. Mr. Fixit typically takes a backseat to Halloween. But, since this year was his 50th birthday, we sort of made a big deal out of it. November brings The Quiet One's birthday and Thanksgiving. And many days off from school. December brings The Boy's birthday and Winter break from school. Which means no regular schedule for weeks. I don't think I need to tell you want that means. And this year, in the midst of all this, my sister and I moved our parents into an assisted living facility. (I have a whole, long post about that for another day.) To say I've been a little busy would be an understatement.

Thankfully, school is back in session, holiday and birthday season has ended, my parents are settled, and routine has returned to our household.

Yesterday we enjoyed a beautiful spring like day with sunshine and near 60 degrees. Wanting to take advantage of the beautiful weather, The Boy and I rode bikes home from school. It was a lovey, soul rejuvenating ride... Until an ambulance went screaming by right in front of us. Lights flashing red, sirens blaring; it even hurt my ears. And The Boy didn't even flinch. Did. Not. Flinch.

He calmly looked at me and said "It's an ambulance. He's helping people." He watched it until he could no longer see it and then he started peddling home again.

Years ago I told myself that I would not overlook the small miracles in our unique life. It's these small moments that fuel our life, keep us going through the hard. And this definitely qualifies.

Two years ago, The Boy would have completely melted down if he heard an ambulance blocks away, while inside the house. Between his Sensory Processing Disorder and his Generalized Anxiety Disorder, an ambulance (or any emergency vehicle) was just too much for him. He couldn't cope. I can't tell you how many times the school has called me to come get him because an emergency vehicle has gone by and he can't calm down. He needs to leave school, a puddle of anxiety. And the rest of our day would be so hard. Anxiety all evening. At bed time he would lay in the dark, squeezing my hand, saying "no ambulance, no ambulance" over and over again. It would stay with him for days. It was all just too much. And it broke my heart.

Years. We've worked with him on this for years. Trying to give him coping strategies that would work for him. We tried noise cancelling head phones. He won't wear them, hates them, doesn't tolerate anything on or around his ears. We tried teaching him to put his hands over his ears.  Another no go. By the time we heard the siren and reminded him to do it, it was too late. He was already melting down and was beyond being able to process the verbal instruction. And if we tried to do it, he would fight us. His "Fight or Flight" response already being triggered. His hearing is so much better than mine, he hears everything long before I recognize the sounds. 

Then, about a year ago, we decided to reframe the trigger. Instead of the siren and flashing lights being an attack, we started explaining why they were happening. The ambulance or police car is hurrying to go help someone. The fire truck is going to put out a fire and help people. These are our community helpers. When you see or hear one, they are helping people. This is a good thing. We want them to be able to get there quickly so they can help.

And slowly, very slowly, it started working. And then yesterday, my boy did not flinch. He didn't meltdown. He didn't panic. He calmly looked at me and said "Its an ambulance. He's helping people."

Something so simple and everyday for most people. For us, it is a small miracle. A huge leap of progress. Something to be celebrated.

This may be a long journey that we are on, but there are a multitude of bright spots along the way.

The Change in Fall

I used to love September. Back to school. Crisp fall days. Leaves changing colors, swirling and drifting to the ground. Football games. Hot chocolate. Fires in the Fireplace. Boots and jackets. I. Loved. Fall. Everything fall. Even rainy, stormy, thunderous nights.

But the past several years have changed me. Fall has become brutal. Every year, September slithers into our house like a serpent, stealing the calm, leaving an enormous amount of angst in its wake. And I watch helplessly as my sweet, joyous, fun-filled boy turns into a shell of anxiety. 

Every year we try to get ahead of it. We try to prepare for it. We work with him on what is coming, how to cope with it. And although it is getting better (slowly, incrementally), it is still BRUTAL. B. R. U. T. A. L. And I am out of ideas. I don't know how to make it better for him. At this point all we can do is power through. Get up every morning (hoping we've gotten some sleep), put one foot in front of the other and power through like the bulldozer he desperately loves.

Its not school. He loves school, asks to go to school all summer. I think the only reason we survive September is because of school. The consistency, the routine. The teachers, his classmates and friends. These all help, even as they too take a toll on his body. Working hard for hours at school is taxing after a summer of running, jumping, playing, swimming... Although school is not the reason for the anxiety, it does add to his inability to mitigate it. 

The cause of his anxiety falls squarely on the shoulders of the change in seasons. The days getting shorter, the weather getting cooler, the clouds rolling in. Its now dark before bedtime. He does not like the dark. It seems to accentuate his already acute hearing. And every little sound triggers anxiety in his body already tense and hyper alert. I cannot tell you how many times an evening I am asked "what's that noise?" It's the refrigerator, or the dishwasher, or the dryer. It's a car outside, a jet passing overhead, the wind in the trees. It's the furnace kicking on for the first time since summer, the ice maker releasing ice cubes, Daddy working in the shop, the floor boards creaking. Noises he didn't even notice during the summer. Now they can cause a meltdown.

The other night as I was putting him to bed he kept saying "no red, no red!" I had no idea what he was talking about. What red? Red what? "Red in the window" he said. "No red in the window." Red in the window? It took a few minutes, but then we realized he'd seen brake lights from a passing car shining in his window. Add one more trigger to the ever growing list.

Fall means occasional rains, which means (at least in his mind) that there might be thunder. And thunder terrifies him. I try, unsuccessfully, to reassure him as he stands at the windows, talking to the clouds, whispering, pleading "no thunder, no thunder", his whole body stiff with tension. I cannot provide the comfort he so desperately needs.

Some days he cries for hours, literally hours. Inconsolable. Little things that haven't bothered him in years can set him off. If I leave the house he cries the whole time I'm gone. He doesn't wander more than 2 feet from me. Even though (at least from my perspective) I cannot provide comfort; he seeks me out, needs to be near me. I am housebound. And helpless. I want so badly to make it better for him. To assure him that it is alright. And nothing I do or say seems to make it any better. Just time. Time for him to get accustomed to the darkness, the coolness, the clouds. 

He does eventually adjust. But in the midst of the angst, it feels like it will go on forever. So we will continue to bulldoze through September. And perhaps sometime in the near future I can fall in love with October. Pumpkin patches and chili. Trick or treating and bobbing for apples. October may become my new favorite month.

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.

Posted via Blogaway

Posted via Blogaway

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.

Anxiety

Sometimes the strangest things will set off Bambam's anxiety. And I don't know why. Recently we were at a sports festival at the fun house. And Bambam was having a great weekend. He tolerated crowds much better than in the past. We attended the small concert on Friday night where he had fun dancing with the other kids and listening to the music. We spent Saturday at the pool which was very crowded and he handled it just like a pro.

Encouraged by Friday night's success, we then went to the amphitheater for Saturday's concert. He was immediately tense. It was louder, there were more people, seating was at a premium. We finally found seating on the outskirts, which was better for him anyway. 

There were several vender booths around, one being a "stuffed banana" booth. I'm not really sure what you have to do to a banana to stuff it, nor do I want to know. I like my bananas in there natural state, thank you very much. But sitting in a chair in front of this booth was a HUGE toy banana with a face including a big, red nose. Bambam was intrigued by this banana and especially the nose which he took to "tweaking". He would run over, tweek the nose, then run back to where we were sitting. He wasn't really bothering anyone, lots of kids were running around. So we simply watched him and let it go.  

After about half a dozen trips, we could see the vender say something to him. We couldn't here him. But he was smiling, didn't appear to be raising his voice or have any concerning body language so we weren't too worried about it. Bambam came back to his chair and said "don't touch nose". I'm sure he was echoing what the vendor had said to him. Which is totally fine. If every kid tweaked the banana nose, it would probably fall off. And perhaps we were a bit too lenient in letting Bambam do it over and over. Seems we are much more accepting of borderline behavior from our special needs kid than we are of our typical kids. But that is really a topic for another post. 

Anyway...its now a couple of weeks later. And Bambam is still showing signs of anxiety about the "banana man". Anywhere we go he asks "Banana man be there?" At night he asks "Banana man went home?" For whatever reason, this exchange bothered him greatly and is now a source of anxiety. And I can't really figure out why. The man was not angry or threatening. It seemed like a benign interaction. The only thing I can piece together is that he was already stressed by the crowds, noise, music and the banana man is what he is associating with that stress and anxiety. But that is just my guess. Parts of that boy are still a puzzle to me. 

The Look

We were back at the fun house this past weekend. And it was First Friday. Which means that downtown is packed with a festive environment of sidewalk musicians, art, vendors, beer and wine tasting, and all the quaint stores are open late. It also means crowds and noise and chaos.

But, since Bambam has been doing so many great things lately, we thought we would try it. First up was pizza by the slice from the hole in the wall pizza joint that we like. Bambam loves their pizza and we usually get it when we go downtown. But its not usually this crowded. As soon as we entered, he stopped in his tracks and grew tense. He had told me right before entering that he needed to use the bathroom. So, even though he said immediately upon entering that he wanted to "go back outside" I made him go use the bathroom first. I barely had his shorts back up before he bolted out the bathroom door and made a beeline outside. No way was he staying or going back inside that crowded place.

On my way chasing him outside, I spotted a mom pushing a special stoller with a 7 or 8 year old girl in it. She caught my eye, she smiled at me as I chased Bambam out the door as he's yelling "go outside now, go outside NOW". And I knew, she knew. She was "our kind". With no words her look and smile encouraged me. She let me know that she understood, I was not alone. We were doing OK. A thousand words and thoughts were exchanged in that silence. And I smiled back hoping to convey to her what she had given me in that brief, silent exchange.

Poop

I recently read that if you are a true autism blog, then you will have at least one post about poop. I don't really consider this an autism blog, its actually about our whole special, blended family. But a large majority of my posts involve our journey with autism. And I have talked about poop. But I've not had a whole post dedicated to it. Until now. 

Last night we hit a Major Milestone. Bambam pooped on the potty! And I mean a real poop. Sufficient amount, with pushing and control and everything. THIS.IS.HUGE. 7 1/2 years in the making huge. OK, well maybe not really 7 1/2 years as no one expects an infant to poop in the potty. But at least 3 solid years of s.l.o.w.l.y working on this from every possible angle. 

To say we were excited is the understatement of the year. Bambam showed every member of our household. Yup, every member of our household came into the bathroom to look at the evidence and congratulated Bambam. I know that sounds weird. But EVERYONE has been working with Bambam on this goal for 3 long years. And everyone was beyond excited. And Bambam reveled in the attention and congratulations. We even took him to the fireworks stand where he got to pick out anything he wanted. Which is a small miracle in itself as until last year he ran screaming from even the thought of a firework. But that is another post.

I realize this is not a done deal. We most likely have weeks, probably months, of accidents and trial and error. But my son pooped on the potty and I am beyond thrilled. Way to go son!

Presume Competence

We've adopted a new philosophy. Mr. Fixit and I decided in a fit of proactive parenting that we were going to presume competence from now on with Bambam. We have always been very cautious with him. Sheltering him. Understandably so. But time and time again, he shows us that he is capable and can do so much more than we expect. It may not be the way we assume it will go; it most often is in his own way, in his own time. But he is capable none the less. 

By sheltering him I think we've been holding him back. Unintentionally. And really with his best interest at heart. We do not want him to get hurt, physically, emotionally, or mentally. I used to think it was hard to send Miracle Boy out into the world, but sending Bambam with his special needs adds a whole new level to hard. It is gut wrenching, anxiety producing terror. I loose sleep at night, I can't concentrate at work kind of anxiety.

But, in keeping with out new philosophy, we signed Bambam up for a few day camps this summer. The first one had a bit of a rocky start (see It was Good...Until it Wasn't) but really ended up being great. Bambam had a lot of fun and his aid was an amazing young college student. We were feeling confident. Presume Competence indeed!

Week 2 was a different camp. This one is run by the local university, on campus. It is a bigger camp. More kids, more leaders, more chaos. Again I talked to the director, we made a plan. We were ready to go. Until we got to check in on Monday morning.

They didn't have any of his information...not even his name. Not to mention the list of special needs and accommodations. Um what??? There were tons of kids, tons of leaders all mulling around. Someone takes us to another table where they look in a new place for his information. Nothing. All the while Bambam's grip on my hand is getting tighter and tighter, he is nudging closer and closer to me. Presume competence.

Finally we find someone who knows about him. She gets down on her knees and talks to Bambam: asks his name, where he goes to school, promises to get him a name tag by snack time. And she takes us to find his group. Bambam's grip is getting tighter yet. I wonder if any blood is reaching my fingers. Presume competence.

We find his group and I ask to talk to whomever is going to stay with him all morning. They stare at me blankly. Usually the kids are handed off from one activity to another (3 of them in the morning) each with different leaders. Not a formula that will work for Bambam, he needs some sort of consistency. Presuming competence is one thing, throwing all caution to the wind and providing him with no supports at all is unacceptable. I finally convinced one of the young leaders (Stormy or Sporty or something. At that point I was almost ready to flee with my child from this crazy place, I didn't really catch her camp name) to stay with him through all the activities. Bambam found a place for his backpack and reluctantly let go of my hand, following Sporty into the gym. Presume competence.

I fought tears on my way to work. I sent Mr. Fixit this text: I do not have high hopes for this. In fact, I'm very nervous leaving him there. Lots of kids and chaos. He was squeezing my hand really, really hard. To which he answered: I was awake all night worried about it. Presume competence.

An hour later I texted: Well he's been there an hour and I haven't received a phone call yet. That's good, right? To which he said: Unless they lost him. Presume competence.

A little later I texted: One hour to go. My stomach is in knots. To which he answered: I'm going 30 minutes early to find him. Presume Competence.

A text from Mr. Fixit: I'm at the pick up area, just waiting for him. 18 minutes before pickup time. My response: OK, let me know how it went as soon as you can. Presume competence.

Finally: He's fine. They said he did fine. Lots of watching, but he's happy. Presume Competence.

He did it! In his own way, watching; but he did it. He didn't get lost, there were no meltdowns, or tears, or accidents, or calls to mom. And as the week progresses and he gets more comfortable, there will be more participation and less watching. All in his own time. Presume competence.

Presuming competence may be good for Bambam, but it just might kill me. At the very least it will turn my hair completely grey and give me an ulcer. I know in my heart of hearts that in order for him to grow we must give him opportunities to learn, sometimes even nudge him along the the path to his full potential. But honestly, this is the hardest thing I've ever had to do. Presume competence. It sounds great, has a nice ring to it. But I think there may be days when I hate those 2 words.

Summer...Again

Summers are always hard with Bambam. Both Mr. Fixit and I work. Granted I only work part-time, but still need some sort of day care for about 25 hours a week. In the past we have muddled through with a hodge podge of grandparents, brother's help, and a very flexible work schedule for both myself and Mr. Fixit.

But this summer, that wasn't going to work. Both brothers got full time jobs. Yeah! But it cuts into our daycare availability. And my parents are getting older. My dad has Alzheimers and my mom really has her hands full caring for him. I can't really expect her to also take on a serverly autistic 7 year old for 25 hours a week. So I went looking.

Our City Parks and Rec answered the call admirable. I talked with the director who insisted they could accomodate all of Bambam's needs. So we met to hash out a plan. She agreed to all the adjustments I suggested to make Bambam's first day camp experience successful. We chose a camp that was less structured, lots of free play time. Set at a park, I would drop him off a little later and pick him up earlier in the afternoon so he wasn't there all day. He could bring his favorite comfort items from home. And at the very end she asks if it would be helpful for him to have his own aid. Seriously? Hell yes! The young man she was thinking of had past experience working with autistic children. She'd have him call me to talk about Bambam before camp started. I was amazed. Perhaps I'm naive, but I had no idea they would provide an aid for Bambam.

Sam did call me and we talked about Bambam. What works for him, what doesn't. What his favorite things are. How to calm him down if he gets upset. The best ways to encourage him to try something new. He asked great questions and was really interested in the answers. I have great hopes for Day Camp. I hope Bambam has as much fun as I remember having.

30 Days of Autism

I'm often asked what its like to raise an autistic child. There is no quick way to answer that question. The answer I give probably depends on the day. Each day, week, month is different. I'm never sure what to expect. As a way to answer the question, I've decided to write something everyday for a month about what its like raising my autistic child. Autism Awareness month seemed like an appropriate month for this project. So, here goes...

April 1: No April fools day jokes, he doesn't understand them. Bambam is extremely literal and takes everything at face value. Jokes simply don't register. Just another day in our household.

April 2: Today is World Autism Awareness/Acceptance Day. So we changed the light bulbs in front of our house to blue ones to join the "Light it up Blue" for autism campaign. Bambam and I also made cookies with blue frosting to take to his teachers and aids at school. We are so very grateful for all of them.

April 3: Bambam's class had a field trip today. In order for Bambam to go on field trips with his class, I have to go with him. Since we never know how he will respond to a new situation, we always need to have a quick exit plan available. So, I follow the school bus in my car and if necessary, I leave with him when needed. Today was one of those days. He lasted all of about 2 minutes before the "school today, go to school, go see E, its E time, its Phil time...." started. He just couldn't get past the fact that Wednesday is a school day and he should be at school doing his work with Mrs. E and Phil. There is no distracting this kid when he gets stuck on an idea. So, we cut our losses and headed back to school. On the bright side, I only missed 2 hours of work instead of 4.

April 4: Today is STAR Sports day. Bambam participates in a recreational sports league for kids with developmental disabilities. He LOVES it. And the volunteers are amazing, all college kids. He gets to run around kicking balls, hitting balls, playing with other kids and volunteers while I get an hour to sit and watch and talk to other moms who speak my language. Its a win/win. One of the things I like about having a special needs child is the ability to see goodness in this world that I otherwise wouldn't see. These college kids really are awesome. Every day heroes is what we call them.

April 5: Some days 8:00 pm can't come fast enough. Some days its just really hard to listen to or talk about the same damn airplane for the 864th time that day. Some days I just have to say "I'm not talking about it anymore, I'm done." And then I hear a little voice saying "I'm not talking about the airplane, I'm not talking about the airplane." I love his tenacity. But really, that isn't much better. Can't we talk about something else, anything else? Please?

April 6: Med changes suck. We are trying a new dosage of one of Bambam's medications. And he's not responding well. He is uncomfortable in his own skin. That's the only way I can describe it. And its awful to watch. We are supposed to give it a week. We are on day 3. I'm not sure we will make it a week. So hard to watch my baby struggle. (we lasted 4 days, then went back to his old dosage)

April 7: Its raining today, so we're stuck inside...all day. Not a good combination for a child who needs to run and jump and play large. That is why we have a small trampoline in our living room, where the coffee table used to be. Yes, our front room advertises that we are a special needs household. And right now I'm watching Bambam jump from the trampoline into a bean bag chair a few feet away and yell "splash" when he lands. Over and over and over again. 

April 8: More testing for Bambam's GI issues. For the past 3 days I've been scraping poo (yes I said poo) from his pull ups to place in small vials. 3 times a day for 3 days. (yes, he does poo that often) Then I overnight FedEx'ed the "package" to the lab. You really haven't lived until you've scraped poo from a pull up. Just a day in the life.

April 9: Bambam has sharing at school today. The topic is "what I did over spring break". So we took pictures of our activities at the Fun House and made a poster using the pictures and simple captions. We practiced over and over. I'm hoping he'll actually get up in front of his class and do it. I will never give up trying and presenting him with opportunities to grow. 

April 10: An example of Bambam's struggles with language: Driving home we saw a teenager walking up the hill.
Bambam: What is that?
Me: What?
Bambam: That boy.
Me: Who is that. When its a person you say 'who is that'.
Bambam: I don't know.
Me: Can you say 'who is that?'
Bambam: I don't know!
Its funny and a little heartbreaking at the same time. I felt like I was in the Laurel and Hardy "Who's on First" skit. But he really doesn't understand. And never repeats what I'm trying to get him to say. It can be frustrating. Language is a puzzle for him.

April 11: Bambam wakes up happy every morning, eager to start the day. We are fortunate that we do not have the anger and aggression that can be common with autism. He's a happy, content child who seems to be unaware that he is "different". I pray everyday that this stays with him his whole life. Sometimes awareness can be devastating.

April 12: Today is Friday. The third day of no school this week, it was a short week for conferences. And Bambam is NOT happy about it. He loves school and thrives on consistency. We just recently got to where he understood that there was no school on the weekends, and accepted it. But non-school days during the week throw him into a tizzy. All day long I hear "I go school today?" I've probably answered that question 100 times today. Patience, patience, patience. And the ability to have the same conversation multiple times a day. That is what is needed to raise my autistic child.

April 13:  We had Bambam's spring conference yesterday at school. Oh, where to begin. His conferences are nothing like what we were used to. Typical measures for a child his age just don't apply. He's behind academically, socially, emotionally, in every way. If it weren't for the great people and educators that surround him at school, these meetings would be so much harder. But we focus on his improvements, no matter how small. And they always celebrate Ryan for who he is, where he is, and what he has to offer.

April 14: The iPad. Thank God for the iPad. There are days when we use it as a crutch and let Bambam watch his favorite videos over and over. I know, its not the best thing for him. But some days, we all just need to step back, take a deep breath, and relax in front of a screen. I may not win parent of the year, but we will survive.

April 15: Tax day. Having a special needs child means an extra deduction on our state taxes. But don't get all jealous. It also means itemizing all the out of pocket medical costs to deduct on our federal taxes. It's thousands and thousands of dollars. Autism is expensive.

April 16: Today Bambam pulled out his loose tooth. It was bothering him that it was loose, that's not the way it is "supposed to be". He doesn't like things that are out of the ordinary, he wants them to always be the same. So no loose tooth, simply pull it out and be done with it. And when asked if he wanted to look at his new toothless smile in the mirror he responded "naw, wanna go pway outside."

April 17: According to Bambam's aid, he can read several sight words. Who knew?!?! That child does not voluntarily show you what he can do. EVER. We've always said that he knows and can do so much more than he lets on. And it makes things so hard. How do you know what to work on if you don't know what he can do?

April 18: Bambam had STAR Sports today. But there were double the kids as usual. It was very noisy and visually chaotic. And to make it even worse, his usual aid "Sam" was not there. Bambam really struggled. He is hypersensitive to noise and visual stimulation. He spent much of the hour throwing himself on the ground or running into the walls. This deep pressure impact helps to calm him. Its one of the ways he tries to self regulate (instead of using his words or other more accepted calming techniques), but it is painful to watch and scary for those who don't know and understand. Sigh.

April 19: We're off to the Fun House for the weekend. But we don't tell Bambam until about 10 minutes before we leave. He cannot handle anticipation; has virtually no self regulation. If he knows ahead of time, he will perseverate on going to the fun house all during school, getting nothing else done. "Go to Fun House now?" will be uttered by him every 30 seconds until we leave.

April 20: So thankful we have the Fun House. Bambam loves it. To him, it is an extension of home, he's been going there since he was 11 days old at least once a month. Without it, we would never have a vacation. He does not do well in new situations so hotels are out. Day trips to new places are also hard. When we attempted a trip to the aquarium last summer, he lasted 10 minutes. We haven't yet tried the zoo. But at the Fun House we go to the airport, the Lodge, the Village, the river, the pool, etc. And he loves it as he knows all these places and is comfortable.

April 21: Motor Planning is difficult for Bambam. At 7 years old, he still cannot peddle a bike. And I'm not talking about balance and riding without training wheels. I mean he cannot get his legs and feet to push the peddles around in a forward motion, one leg push down, one leg pull up. He sits on a tag along bike behind Mr. Fixit and just rests his feet on the peddles. Mr. Fixit pulls all 65 pounds of him and the tag along bike, pretty much dead weight. We work on this weekly. Bambam got a new bile for his birthday. He sits on it, pushes it around with his feet on the ground, but cannot peddle. I crouch over behind the bike with my hands on his feet on the peddles and maneuver his feet around. It is not easy, or fun. But my kid will eventually learn how to ride a bike, dammit.

April 22: It's Special Needs Ride Night! The local Sheriff's Mounted Posse hosts a ride for special needs kids twice a year. The kids get to ride the horses lead around the arena by the deputies. It's awesome. And they take a picture in front of a green screen and then insert different backgrounds. We have one showing a cattle roundup, and an old western town backdrop. It's very fun. It takes some time and initiative, but there are many opportunities for special needs kids if you go looking. They are different opportunities than "typical" kids have, but they make for great memories just the same.

April 23: OMG. After 7 years you'd think this would no longer surprise me. The BLOWOUT. Like many kids with autism, Bambam has major GI issues. As a toddler and preschooler, it was not unusual for him to wake up screaming bloody murder in the middle of the night several nights a week from "tummy trouble". Thankfully, those days are gone. But, he still struggles with his bowels. Meaning, he doesn't have control. He's either constipated or has diarrhea.  Sometimes he will go several days without a BM and then have a major blow out. I've never seen anything like it before. There is poop everywhere. Down his legs, in his shoes, up his back to his shoulder blades (its even been in his hair), up his front to his belly button, squishing out everywhere. Its not uncommon to just throw away whatever he was wearing, I don't think I could get it clean. And then I dump him in the shower. As he gets older, it gets more disgusting. If we could only get the BM's under control....

April 24: The weather is getting nicer and we went to the park after school. Since I pick Bambam up an hour early from school everyday, the park was empty when we got there. And he had a great time flying his glider, swinging, playing on the equipment. But no sand. I don't let him play in the huge sandbox. I know, bad mom. But when I look at it all I see is a great big litter box for all the neighborhood cats. And he still mouths things, including his fingers. Ew, just can't do it. But he loves the park and has a great time. Until all the other kids arrive. Then my bubbly, laughing, playing child gets quiet and comes to sit next to me and watches the other kids playing tag together on the equipment. And it breaks my heart as I watch him watching the other kids longingly. And not know how to join in. And I ask him if he wants to play with the other kids. And he hesitates .... before he answers "no, go home now". And I want to cry.

April 25: We are having some drywall repaired on the ceiling in our family room. So everything had to be removed and put in other rooms. So our really big plant (tree?) that is usually in the corner of the family room is now against the stairs in the entry hall and everyone has to walk around its huge leaves in the hallway and on the stairs. And one really big, beautiful leaf was in Bambam's way coming down the stairs. So he pulled it off. Not out of anger or spite or being mischievous, just because it was in his way. He was so surprised that I was mad. If something is in your way, just get rid of it. Logical. But not necessarily the right thing to do. No grey in his world, just black and white.

April 26: One of Bambam's meds is a stimulant for his ADHD. It is considered a controlled substance. So, every 30 days I have to go by the doctor's office to pick up a script and take it to the pharmacy. Today was the day this month. Such a pain.
April 27: Bambam has terrible eczema on his feet. Its so bad that his feet and toes crack and peel and bleed and look like they are rotting and going to fall off. Its really disgusting. And I've tried everything. Every night after he is asleep, I creep back into his bedroom and slather his feet with special cream and then put on socks. It helps, but does not cure the problem. We are working with a new holistic doctor to see if we can't find the cause.

April 28: Bambam started Special Olympics golf today. He LOVES golf. Started hitting a golf ball when he was 3 years old. The summer he was 5 he broke the sliding glass door hitting a golf ball into it. From then on it has been wiffle balls only in the back yard. So we thought we'd try Special Olympics golf. He's the only kid. There is no one close to his age, they are all adults. But he does not care. He gets to hit golf balls. And hit he does. One after another. Until there are blisters on his hands. Until we tell him he has to stop.

April 29: Something triggered Bambam's anxiety tonight. I'm not even sure what. But at 7:00 he wanted to go to bed. Bed is his safe place, his comfort. When he is really anxious, when his "fight or flight" response has been triggered, he wants to go to bed. In the past I've not been able to calm him, he has not sought comfort from me or anyone else. He goes to bed with his heavy covers and grinds his teeth. But tonight, tonight my boy was laying in his bed and I was sitting beside him in the rocking chair and he held out his hand to me and said "hold hands". He reached out to me for comfort. My boy sought comfort from me for the first time. So I held his hand, and with my other hand I rubbed the back of his hand, his arm, his back. I tried to impart some of my strength into him, rub out some of his stress and anxiety. And in time he fell into a peacefull sleep. My son reached out to me for comfort tonight. Little miracles are amazing.

April 30: This boy is amazing. He is joyful. He is funny. He is loving. He is affectionate. He is athletic. He is tall. He is gentle. He is sweet. He is strong. He is fast. He is pesisitant. He is tenacious. He is also autistic. But autism does not define him. It is just one part of him. One of many, many parts. He is beautiful.

Note: Being as technologically inept as I am, I thought this had published on April 30th. Oh well, better late then never. Happy Autism Awareness month, about 20 days late.  :)

Miracles

“We must pray for miracles, work like crazy for miracles, expect and demand miracles, and for goodness sake, we must see them for what they are when they happen.”

I read this on another autism mom's blog today and it struck a cord with me. I've seen miracles.

I've seen big miracles. When Miracle Boy was three months old, he had emergency open heart surgery. He was in surgery for 11 hours. We were told he had a less than 1% chance of surviving. I'll stop here and let that sink in. Less.Than.One.Percent. As in almost no chance of survival. At one point, someone (I don't remember who) told us that we would be ushered to the operating room so we could hold our infant son while they "unplugged' him and he died. To this day I do not know how I survived that. I'm amazed my heart didn't give out.

But, not only did Miracle Boy survive, he thrived. All the predictions of being a medical invalid, needing a heart transplant, having developmental delays or other effects from lack of oxygen, none of them came true. Today he is a healthy, happy, bright, promising young man. And every year when we see his cardiologist, that man simply shakes his head and says "I'm not quite sure why this young man is alive. It's not because of anything we did. I never believed in miracles until he came along." He truly is a miracle, a big one. One that happened in an instant, on an operating table, while dozens of doctors watched in disbelief. One of them told us "We had given up. And then there was a spark and his heart just started beating again." No medical explanation, a miracle pure and simple. One I'm thankful for everyday. Big miracles are easy for everyone to spot.

But I've seen little miracles too. Sometimes they are harder to see, or recognize as miracles. But this does not make them any less spectacular.  Bambam is the king of little miracles. And each one of them is precious. The fact that my non-verbal 3 year old now talks in full sentances at 7, a miracle indeed. When he started finally walking at almost 2 years of age (and 35 pounds) it was a miracle. One my back is ever thankful for. Walking into his classroom and saying "hi TJ" to his classmate (with appropriate eye contact), that is a miracle. Attending a birthday party at a bounce place with 20 other kids and not only surviving but having fun and laughing, another miracle. Each one of these miracles has taken hours of hard work and determination (on everyone's part), constant coaching and exposing, leading, prodding. But, just because we work at these things, that doesn't make them any less miraculous.

“We must pray for miracles, work like crazy for miracles, expect and demand miracles, and for goodness sake, we must see them for what they are when they happen.”

Indeed.

The Report Card

We recently received Bambam's first report card. To be fair, we did receive progress reports in preschool and kindergarten. But this was his first "real" report card from first grade. And WOW. Talk about depressing. The entire report card was filled with "n/a's". And I mean the entire thing, no other marks at all, just "n/a". Even though I know exactly where my child is developmentally, this still makes me take a step back, sit down, and breath deeply so I won't cry. I've said it before and I'll say it again: seeing in black and white exactly what my child cannot do is one of the worst things about being a special needs parent for me. I really don't need to be reminded, I live it every day.

This report card seems worthless to me. I'm not sure why the school even bothers to send it home, other than I'm sure it's required by some stupid administrative rule. And I'm sure his teacher likes filling it out about as much as I like receiving it. Who wants to focus on what a child cannot do?

Apparently not Bambam's teacher. Because in addition to the report card, the envelope held a letter written by her. The first sentence said: "Bambam has made steady progress since the beginning of the year." And then she listed items that he CAN do or where he has made significant progress. These are not things measured on the report card of a typical first grader. They included items such as

• Greeting peers by name and making appropriate eye contact
• Having short, appropriate give and take conversations with peers
• Reaching conclusions after hearing spoken information; expressing his conclusions
• Using a quiet voice when interacting with peers and adults
• Accepting of "now" and "later", will concentrate on work now for a reward later
• Able to spend up to 30 minutes in the classroom and remain calm with normal activity/noise level of peers
• Participating in PE and Art with his class
• Beginning to do academic activities in the classroom with an aid, or with a peer but no adult supervision (HUGE!)

There were 16 of these items. And she ended with "I am expecting great things from Bambam. He is doing wonderfully". I'm not ashamed to admit that as I read this letter, I did cry. I was crying not just for the improvements we've seen in the past 4 months (awesomeness!), but for the people that surround my son at school. People who "get him". Who celebrate his small accomplishments as much as I do. Who clearly love him for who he is, where he is, and what he has to offer. For this I am grateful everyday. 

As for the report card, they can keep that. I'm keeping the letter.

The Power of Language

The New Guy (Bambam's neurological psychiatrist) is big on language development. As he put it "language is the key that unlocks everything". He's encouraged us to supplement the speech and language therapy that Bambam receives at school with private SLP on a weekly basis. We're getting this set up. But, in the mean time, we've had some evidence of how powerful language can be for a child like Bambam. Two very recent examples come to mind.

Last weekend Bambam was sick. Just a 24 hour thing, but fever, vomiting, stomach ache, you get the idea. In the past when Bambam has been sick and vomiting, he's been a disaster. It always included yelling, screaming, crying, flailing about, spitting, and general meltdown mode. There was no comforting him, he would be a disaster until he fell asleep. But last weekend we had a different sick kid. This one could tell us "I doan feew good". And even warned us with "I frow up, I frow up!". Like any mom, I felt terrible that my child was sick. But, I was also thrilled with this little boy who could TELL ME that he was sick. Being able to verbalize how he was feeling was amazing, a first, a huge step forward in his development. And it seemed to give him a sense of control. He wasn't yelling or crying or screaming and there was no melting down. Just a sick little boy laying on the couch saying "I doan feew good".

Then, later this week when I went to pick up Bambam from school, they were having a fire drill. And wow is that alarm LOUD. I could hear it 2 blocks away inside my car with the radio on. And I cringed. Fire alarms have always been a source of meltdowns for Bambam. In fact, the school has excused him from all fire drills since the first one his kindergarten year that traumatized him. I'm not sure how this one occurred without me getting a call to pick him up early and I was a little upset about that. I figured I was going to have a very long afternoon with a child close to meltdown stage for the rest of the day. But, as I waited for him to return to the building with his aid, what I saw amazed me. Here came this little boy holding Mrs. "E's" hand with no tears, no yelling, no melting down. When he saw me he said "is too loud, it scares me".  Um, WOW! The power of language. Just being able to say that it was too loud and scarey gave him the control he needed to be able to function in that situation.

New Guy is right, language is the key to unlocking everything.

The New Guy

We've add a  a new doctor to the line up. He's a developmental psychiatrist specializing in autism and ADHD. Why didn't someone refer him to us years ago? (Actually I know why, he's new to our area.) I think I love this man. He's knowledgeable, practical, caring, and (as he put it) not very PC. I don't know about the rest of you, but I get so sick of all the PC crap. Sometimes my kid acts crazy, totally off his rocker, nuts... and I call it like I see it. So does the new doc. We're going to get along great.

So we started with the typical evaluation appointment. But, being the practical person he is, New Guy didn't even try to put Bambam through the standardized tests. After spending 15 minutes talking to him he realized testing would get him no where. Having 20+ years of experience under his belt, he had no issue giving a diagnosis based on observation, history, and completed diagnostic forms from us and the school. And, he took the diagnostic forms that we filled out in November so we didn't have to do it all over again. Bonus! The result: Autism, ADHD combined type, and Generalized Anxiety Disorder; all severe. But, he said he's be very careful about giving him a diagnosis of an intellectual disability at this point. As he said "its obvious that Bambam understands everything". He feels that his various symptoms and lagging expressive language are getting in the way of his "academic progress". So, intellectual diagnosis will wait.

The next step is refining Bambam's meds. New Guy is convinced we can do better. So we've made a change and we're seeing some amazing results. For the past week, Bambam has been able to spend much more time in his home classroom. He's working with peers without the need of an adult aide, he's using an appropriate "inside" voice, he's not getting overwhelmed in the lunch room or PE or music or at recess. He's having conversations with his peers, appropriate give and take, on topic! Granted, it needs to be a topic he's interested in, but still, this is huge improvement. 

I'm excited about the changes we're seeing and I'm hopeful for a working relationship with a knowledgable doctor. I have high hopes for The New Guy.

Brother

Bambam adores his brothers. Both of them. But he has a special bond with Miracle Boy. I'm sure this is because Miracle Boy has always lived with Bambam. He's always been there, a constant. He loves The Quiet One just as much. But in times of stress, he wants Miracle Boy.

Other than Mr. Fixit or me, Miracle Boy is the only one that can put Bambam to bed. When he needs help going potty or needs changed he turns to Miracle Boy. (Actually me if I'm home; Miracle Boy is a close 2nd even before Mr. Fixit.) 

He follows Miracle Boy around the house, wants to hang out with him in the basement, sit next to him at dinner and in the car, mimics him. And he calls him "Brother". It is the sweetest thing. He occasionally refers to him by name; but most of the time he simply calls him "Brother". He loves it when Miracle Boy babysits him: "Brother stay with me?" with a huge grin on his face. 

And for the most part, Miracle Boy is up to the challenge. (He is after all a teenager, so sometimes he squawks about it) On school holidays, he frequently acts as Bambam's care provider so I can work. He stays with him so Mr. Fixit and I can have the occasional date night. He is an integral part of what makes our household work.

So I should not have been surprised this past weekend. We were at the Fun House and went sledding for the first time this season. As expected, Bambam was hesitant, something outside the norm. Nothing Mr. Fixit said could convince Bambam to go down the hill with him. So Bambam watched as everyone else went on a run. And he still refused when Mr. Fixit tried to get him to go along the next time. That is until Miracle Boy asked if he wanted to come sledding with him. With that, he took off in a run with a huge grin and went sledding with "Brother".

Humanity

I refuse to give up my belief that people want to do the right thing; that at the heart of it they basically want to do and be the best that they can. I'm not naive enough to believe this is true of every single person, I know there are exceptions. But as a whole, I believe this to be true. I believe in humanity

I see examples of it every day. I see it in the scruffy man who paid the difference for the little girl who didn't have enough money. I see it in the cashier at the big box store who lifted the big turkey out of the elderly ladies cart to scan it and then put it back in for her and then called another employee to help her to her car. At a big box store that doesn't provide any help, at all, for anything. I see it when 3 cars stop for the stranded lady on the side of the road to see if they can help her. I see it in the gentleman who opened the door for me today. I see it in the smiles of the people I pass.

And I see it many times a day in Bambam's activities. I see it in Bambam's swim teacher who goes above and beyond to connect with him and keep him engaged. Who patiently replies "goodbye" 18 times as Bambam says this every 10 seconds as we are getting ready to leave. I see it in Bambam's teachers and classmates who are beyond accepting and caring. I see it at the pool where they do not make Bambam where the paper wrist band as it dives him nuts. I see it at the Fun House airport where they allow Bambam out on the tarmac to see the planes. I see it in his soccer coach, who with no real experience with autism made appropriate accommodations for him. Who was supportive and understanding and who celebrated his little victories as much as we did.

But even more importantly, I see it in strangers who we pass briefly. People who don't know him and don't really understand his quirks. Like the lady at the groccery store in front of us who asks if we want to go first so we don't have to wait so long. Or the pharmacy clerk who engages him in conversation and seems completely comfortable with the fact that he is stuck on the same thought. Or the man at the stables who graciously took us back to see the horses in the barns, even though the barns were closed.

Don't get me wrong. Not all of our outings are all roses and sunshine. One particular example comes to mind. Last year I took all three boys up to the ski lodge. The older boys were snowboarding and I thought Bambam would enjoy a day playing in the snow. He loves the snow. Boy was I wrong. It was a new place, his brothers went off on the mountain without him, it was noisy and chaotic in the lodge and Bambam was beside himself. By the time I got him into the bathroom to put his snow clothes on he was in full blown meltdown mode. He was screaming and flailing all about as I was trying to change him when the janitor approached us and said to him "You are really too old to be acting this way."

Being on my last nerve, I lost it. It is not my proudest moment. My response to her was "Even though he looks 8, he's only 5. And he's autistic. So, when you've raised a special needs child, then you can comment on how I'm raising mine." At which point I started crying right along with Bambam. It was a low point for me. We walked off around the corner to try and put his boots on.

But you know what? Before we got calmed down and both boots on, she came back. She gently placed her hand on my shoulder and said, "I'm so sorry. It was really none of my business and I shouldn't have said anything. Is there anything I can do to help?" And I started crying all over again.

In the midst of all the terrible news stories we've been hearing, I still refuse to give up my belief that people want to do the right thing; that at the heart of it they basically want to do and be the best that they can. I choose to believe in humanity.

Birthday Parties

Bambam was invited to a classmate's birthday party. This is HUGE. This is the first birthday party invitation he's received. Granted, the entire class was invited. But they included Bambam. I was both touched and intimidated at the same time.

I do not remember what a typical 7 year old birthday party is like. Bambam has never had a birthday party with his peers. His parties include our family plus both grandparents. And even that can sometimes overwhelm him. I can't imagine him at a party with 20+ kids.

On the plus side, the party was at the indoor bounce place. Bambam loves the bounce place. Imagine, a boy who's stim is to jump; the indoor bounce plance is like heaven to him. Jumping grounds him, calms him, helps him to block out overwhelming stimuli. He begs to go there ALL.THE.TIME. Plus, that probably means that there will not be organized activities, but rather free play time. This might just work.

The invitation asked for an RSVP. I would have called the parents anyway. In a situation like this, I want to make sure they know who Bambam is. That they understand his... uniqueness. So I called and clumsily ask the dad if he knew who Bambam was. And I will forever remember his response. "Of course I do. He's the cute little blond boy with the aide." And that just about made my heart melt. What a sweet way to identy my boy. Not "the special needs boy" which honestly doesn't offend me, he is a special needs child. I just really thought that he identified Bambam in a very sweet, respectful way. And I knew we had to attend the party. Especially after he went on to say that his son has specifically asked to invite Bambam.

So, Bambam and I went shopping to find a birthday present. I had asked the dad what his child liked so we were armed with good info. And, as luck would have it, this little boy loves sports. Just like Bambam, any sport with a ball is awesome. Bambam picked a football with the team logo from our local university. Then he helped me wrap it in a gift bag with tissue. It may not have been the prettiest present, but Bambam was so proud.

He was so excited the morning of the party. He almost drove us nuts. It was all he talked about. All morning long we heard "go to bounce house now?",  "go to party now?", "see my friends now?". Over and over until we finally left.

When we arrived it was a little chaotic and Bambam hung back for a little while. But with some promting, he greeted the boy with a "Happy Birthday" and gave him the gift. Then he ran off to go bouncing. Throughout the 2 hour party, the other kids would invite Bambam to join in what ever game they were playing, and sometimes he did. But when the noise and chaos got to be too much, he would go find a quieter corner to bounce by himself. I was so proud of him that he knew what he needed and was able to get it without a single melt down. This is true progress. He even invited another little boy from his class (who is shy and reserved) to come play with him in the quieter corner. 

When it was time for cake and presents, we were all ushered into a room that was already set up. I knew this would be the hardest part for Bambam. The room was a little hollow and echoed. With 22 ampted up kids and half a dozen parents, it was loud and chaotic. A recipe for sensory overload. Bambam took a seat next to the shy little boy he had previously asked to play. He ate about half his cake before he turned to me and said "I need to go home now." Not wanting him to go home yet, I suggested he go find a quiet corner and jump for a while. He ran off with a smile. 

When it was time to open presents, I called him back to the room and he watched from the doorway as the birthday boy opened all his presents. After which, all the kids ran out of the room to go bounce and play. And you know what? That football, the one Bambam had brought for the birthday boy, it was the favorite present. The birthday boy carried it all around the bounce place. And all the other kids wanted to play with it. And Bambam was grinning from ear to ear as he ran after them.

That was about the best birthday party ever.

I will forever be greatfull to the amazing kids in Bambam's class. They are caring, understanding, tolerant, accepting, etc. The list goes on and on. They amaze me on a daily basis. They are being lead and taught by wonderful adults. The parents of the birthday boy were so gracious. They both went out of their way to make sure he was included, comfortable, and having fun. The mom even gave Bambam the balloons at the end of the party. This was a success on all levels. 

Seven!

My boy is turning 7. My sweet,cherubic, happy baby boy is now a big kid of 7. I'm not sure how this happened in the blink of an eye, but it did. You'd think I'd be used to it, he's not the first. But it still makes me pause.

First grade. He's in first grade now. Not quite at school all day (he comes home an hour early, that seems to be all his sensory system can take) but still much longer than kindergarten. And I'm so proud of him.

He still spends much of his day in the LRC with a one to one aid. But he is now ASKING to go to his class. He will sit with the other kids for 20 minutes as they read to him. He participates in art and is so proud of his masterpieces. He works with his teacher to check in all the kids and their homework in the morning. He knows and greets all his classmates by name. He goes to library with them and uses a quiet voice (wish I knew how they accomplished this, he still only uses very loud at home). He wants to be with them, interacting with them. And I'm so proud.

He is now eating lunch in the cafeteria with his class. And actually eating his lunch. Without an aid by his side. And going to recess with all the other kids. And not getting overwhelmed or melting down. He's playing with his peers. And I'm so proud.

He is taking swimming lessons. I sometimes wondered if he would take lessons of any kind. But now he's in swimming. And he loves it. He looks forward to seeing Teacher Brad. And Teacher Brad is awesome. Honestly, about 10 minutes is spent on actual swim lesson stuff. The other 20 are spent on more social interacting. But my kid is kicking, and using "big arms", and blowing bubbles, and going underwater. There is no actual swimming yet, but I know there will be in his own time. And I am so pround.

He has grown and gained skills in so many ways. I simply can't write about them all. My baby is now 7 and I couldn't be prouder of him. Happy birthday big boy!

Broken Hearted

My heart is breaking. My soul is heavy. I'm not even sure how to express in words the sadness I feel.

I took Bambam in for evaluations today. And all I can say is it was an epic fail. I know people throw that phrase around all to often these days. Its lost some of its meaning. But this was, in every sense an epic failure.

The evaluation was to start with an IQ test, move on the some social response testing, and finish up with some testing for ADHD. He lasted 15 minutes. During which he answered about 3 questions before his anxiety rose to the point that all he would say is "go home now, go home now". He didn't even respond to the question "can you show me your mouth". And I mean no response. Wouldn't look at the psychologist, didn't point, didn't have any expression, just repeated over and over "go home now, go home now." The doctor wisely stopped the testing at that point.

I am desperate. Desperate for some answers. (which I may never get) Desperate for some guidance and a path to follow. Desperate for anything. If no one can administer a meaningful test to this child, how can we determine where he is, what he needs, how best to help him. He knows where his mouth is. But he is unable to function in a testing setting with a stranger he doesn't know. And it breaks my heart to see him with so much anxiety, unable to do the simplest of tasks.

We realize that there is a very good chance we are dealing with some intellectual disability along with the autism. (one of the reason for today's testing) But my 6 year old knows where his mouth is. How do we determine how much of his response (or lack there of) is the result of intellectual disability and how much is the result of autism or anxiety or dyspraxia or sensory processing disorder or any of the many other labels that have been attached to him? Its overwhelming. And heartbreaking.

The next best thing is to have us, his parents, fill out several questionnaires about his behavior and abilities. I hate these. We've done them before on many occasions. And it never gets any easier. Being faced in black and white with the struggles my child faces on a daily basis is hard. Hard really isn't the right word. It's heartbreaking. Really. No, my 6 year old is not completely potty trained. No, my 6 year old cannot button his shirt independently. No, my 6 year old does not know his phone number, cannot read, does not play with peers his age... Yes, he perseverates on the same topics, talks incessantly, doesn't understand facial expressions... The questions go on, and on, and on. And I know all of this, I see it every day. But to have to put it down on paper where everyone can see it in black and white. Well, it nearly breaks my heart.

This is such a painful process. But I am so desparate for answers, or at least some guidance and help. And I'm not sure I'm going to get it.  My heart is breaking and my soul is heavy.

More Evaluations

On Monday Bambam goes in for another round of evaluations and tests. 4 hours of testing with a neuro-psychologist. A new Doctor that he doesn't know. In an unfamiliar setting. In an environment where he knows he's being evaluated and wants to do things "right". It is a familiar formula which always equals a very anxiety riddled little boy. I wish I could do it for him. 

I do not like being the one to take him, exposing him to what is for a him a hostile environment, a painful experience. As parents we want to protect our children. Keep them from pain, anxiety, fear. But sometimes it cannot be helped. I know it is for the greater good. Making sure we are on the right track, providing him with the services and accommodations needed to reach his full potential. But that won't make Monday any easier. Sometimes being a parent is hard.