Searching for a Friend

I'm searching for a friend. Maybe you've seen her?

I haven't met her yet, but I have an idea what she looks like. James reminds me incessantly of my mission. She is 2. She is not too big or too small - she is just the right size. She is black (well, it is ok if she is mostly black.)

I know what she will do. It's all very clear. She will run around a lot and do silly things. She will play with James and Johnny in the yard. Mostly she will be with James. She will sleep with him and comfort him when he wakes up anxious in the middle of the night. She will be there when he needs a friend to talk to or sit quietly with.

And she will completely ignore both cats.

I definitely know what she WON'T do. She absolutely will not eat Fluffy, Johnny's almost real stuffed kitty. She won't eat any of Fluffy's friends either. And of course she won't bark, jump, nip or whine too much. She won't mind sharing James and Johnny with a houseful of friends jumping and screaming and laughing and playing, and she won't get nervous when kids flap or make sudden noises or run back and forth across the room like squirrels.

I know. Good luck, right???

But here's the thing. Years ago, we noticed that James' mind stopped racing and his anxiety was visibly decreased when he was around dogs. Big dogs. Labs. He immediately went from completely out of sorts to calm and relaxed just by petting a dog. But with two older cats in the house, a  less than enthusiastic husband and a skittish younger brother, getting a dog for James wasn't a viable option. I tried to push it for a while, and then gave up.

James didn't however. His interest in dogs grew over the years. He started asking to drive by the off leash park on the way to school, and he kept a mental inventory of what kinds of dogs played there and when. James delighted in playing with friends' dogs. He would empty a huge basket of tennis balls all over the back yard for one lucky lab each time we went over to their house, giggling and flapping as Buddy would chase each one. He would go across the street just to pet Lola, and run back and forth in front of our neighbor's yard so their German Shepherd could run along side.

And then this past July we went to visit my sister and nephews in California. That story in pictures to come soon (I promise) but for now I need to focus on the task at hand. Because for three magical weeks, this is what I watched:

Gypsy. James' new best friend.

Johnny isn't skittish any more!

We've been back for more than a month and now both boys are constantly begging for a dog. James is stopping dog owners with a barrage of questions about age, breed, silliness level and bark frequency. All data is compared to Gypsy, his new best friend benchmark. The deer-in-the-headlight look I see in each of those unsuspecting people turns into amusement and understanding when I explain that James very much wants a dog. James rushes to explain EXACTLY what his dog will be like and that look becomes one of thoughtful mentor as each provides details, encouragement and (thankfully) responsible advice.

Having a dog is going to be a big adjustment for our family, and I know it is going to take a lot of time and care to find her, but I am lucky to have friends with a lot more experience and insight than I do who immediately stepped up and are helping me search. With their help, and with yours (if you know the dog described above who is waiting for an adoring new best friend) we'll find her.

And this new friendship is going to be totally worth it.

Following the Leader

He was two. Although it was still a bit light outside, it was way past his bedtime and he was exhausted. We all were.

We couldn't figure out why he was so out of sorts. He seemed fine until we started trying to put him to bed, but each time we tried to put him in his crib he started screaming. He was trying to wriggle out of our hold. The closer we tried to hold him to console him, the more upset he got and the more he fought to get away.

He kept going for the front door. He needed to go outside. I tried to think of what we had done that day that might have set him off. Nope, nothing different. We did an inventory check of all the things he carried around. Everything was where it should be. Nothing was missing. Nothing was left out in the yard.

He kept trying to get past his dad blocking the door. We couldn't redirect him. We couldn't calm him.

We had no idea what it was that he was looking for, but we knew he wasn't going to calm down until he got whatever it was.

Finally, we gave up and opened the door. He bolted outside and went straight for the front gate.

Tony followed him. I stayed with baby Johnny and waited.

James went across the street to our friends'. Tony explained that he had no idea why, but James needed to come over and he now wanted to go in their house. They all watched James run through their house and out the back sliding door to their backyard. He bee-lined for the Little Tykes slide and went straight down.

And his face changed. In the 2 seconds it took to slide to the bottom, he became calm. He allowed Tony to pick him up and he rested against his dad as he was carried home. He laid down in his crib, relaxed.

I realized that night that James was the only one who knew what he needed, so we should follow his lead.

Last year I asked all my friends to wear blue for Autism Awareness Day and think of James. I put a blue light on our front stoop and left it up for the entire month. I put a puzzle piece magnet on my car. I wrote a post about what I thought we could do to educate others about autism. I did all the things I thought I should do as James' mom to help raise awareness and understanding.

But I realize now that I was thinking more about what I needed last year than what James needed. I wasn't following James' lead.

James has never liked to receive any attention. At all. He has always hated when we said "good job" to him or praised him, no matter how great the accomplishment. I think it puts too much pressure on him, but I don't know for sure. He's never told me why.

Lately his little brother has been talking about autism. I'm happy that Johnny is trying to understand it better, but James gets really upset when Johnny brings it up and he tells us in no uncertain terms to stop talking about it.

I'm trying to help James navigate it all without telling him how to feel. I don't know how much he understands because he doesn't want to talk about it, but I can tell it is on his radar. Out of the blue the other day James asked if his friend has autism. When I said yes, he told me that was good because we could bring the friend to our autism open swim at the local YMCA. It is little glimpses like this that confirm we are on the right track. It all just needs to be in his own time, and it needs to come from him.

I should follow James' lead on all of this. I want to make sure that I don't try to speak for him, because he has his own voice. And it is getting stronger every day.

So for Autism Awareness month, I am not going to draw attention to James by having a magnet on my car or shining a blue light on our front stoop. I will continue to support my son and quietly watch to see which slide he chooses to go down next. And I will follow his lead.

Just a Walk in the Park

When I had to stay home from a planned hike earlier this week to take care of sick Johnny, my friend suggested James go along with them anyway.

He didn't want to go. He was nervous. He thought he'd get lost in the woods or get separated from everyone. He didn't want to leave his dad and me. He was convinced that something awful was going to happen to him.

Tony and I finally talked him into going, assuring him that his friends and their parents would take very good care of him. He agreed to go with a noticeably shaky voice, but was still second guessing his decision on the way to his friend's house.

I talked to my friend about it. We've been in this place together many times (I wrote about it here), and she completely understands his fears and my worries. She assured me that both she and her son would stay close to James and make sure he never felt scared.

And then she sent me this photo. This absolutely perfect photo that made me realize for the bazillionth time that both James and I have the most incredible friends. Ever.

I can't stop looking at it.

 

And every time that James tells me he can't go somewhere without me, or he is afraid that he will be left alone, I'm going to show him this photo.

 

The Waiting is the Hardest Part

I check my phone for the time. Then I check the bars to make sure I have reception.

I send another text to my friend Sheri watching my boys at the pool. How are they? Is James OK?

I'm sitting outside the hotel in my car. It's 95 degrees out. I'm blasting the A/C. I turn up the music and try to play a game on my phone. I check my texts.

I'm frustrated at myself. What was I thinking? I should have stayed with the boys. I should have just brought them with me when I went to go pick up my friend who is visiting. I thought it would be a quick round trip and I would spare them sitting in Boston traffic, but his one meeting turned into another and now an hour is turning into two. That is a long time for James to be at the pool, especially without me. What if he has an anxiety attack like he did last week? What if it is even worse than last time?

I text Sheri back. Did I tell you that he has to know where you are? That if he doesn't see you when he decides to look that he will panic and think you've left him? I know full well he is in good hands. He's been at her house countless times, and now he is at a familiar place with her and her son, and my friend Patty and her daughter. Autism mamas both of them. My support group. My village.

But I still worry. Familiar doesn't mean safe. Not to James. And this is too soon. Something is going to go wrong.

I try to think about how psyched I am to see my friend. The visits are few and far between. We get to hang out with my family all afternoon. As soon as we get back that is. My mind goes back to the day at the pool when I was saying goodbye to someone and James couldn't see me. Two minutes later I saw him with the manager, crying and trembling. "I thought you left me" he cried into my shirt.

I turn off the A/C and roll down the windows. The hot air doesn't bother me because I feel like I can't breathe anyway. It actually makes me feel better to be physically uncomfortable too.

Yes, we'll have fun together tonight. If James is OK.

I know how lucky I am. Lucky to be able to leave him with a friend for a few hours. Lucky that James can tell me what is so upsetting and ask for help. But although I recognize how blessed I am to have these luxuries, it doesn't seem to make it any easier. For either of us. And it doesn't make him less affected by autism than anyone else who is on the spectrum. 

James doesn't know what is going to cause him to panic. He can't determine what is a real life threat and what is an impossibility. Once the panic sets in, he can't stop it from completely suffocating him. I wrote about his fears here in this post last year. Nothing has changed since then.

I never stop thinking about him and worrying about when the panic is going to take hold. He can go for a week without an anxiety meltdown, only to have it come out of the blue with the kind of force that takes us both down with a single blow.

And it is back. With a vengeance. The incessant worrying at bedtime about every sound he hears conjures images of airplanes flying into the house and fires trapping him in his room away from us. He can't make his mind quiet from the fear. When he wakes up in the middle of the night every night, these are the images that haunt him. He is alone. He is trapped.

So we lay awake together each night, me quietly reassuring him that he is safe and nothing will happen to him. That I will protect him always. And he finally falls asleep, exhausted and drained. I lay awake, worrying enough for both of us.

I hear from my friend. "I'm sorry" he says. "It might be another half hour". He shouldn't be sorry. It was my idea to come down before he called with the hopes that he'd be done early.

I take his advice and go into Nordstrom to wander around. I walk past the cosmetic counter, baffled by the well dressed women sitting in chairs, gabbing while they try on different shades of blush and compare beauty secrets. How do they make it look so easy? Why aren't they rushing through their makeovers to get back to their kids? I go into the shoe department. I can handle that. I see a cool pair of sneakers and am just about to ask for my size when I see 2 other people waiting in front of me for a salesperson. I can't wait that long. I check my phone again.

I go up the escalator and start wandering through racks of clothes. Touching each piece as a I walk by, looking straight past each one. I don't realize I've stopped and am holding up a shirt until I hear a distant voice "Excuse me?"

Confused, I look towards my phone first. It doesn't sound like it could have come from there, but I'm kind of in a fog. "Sweetie?" I look up and there is a woman in front of me.

"I don't think you noticed you are in the Plus sized section. I think you should be over in Misses". I look in the direction she is pointing. I nod. Give a stifled laugh.

I put the shirt down and start moving in that direction, just to please her. I walk straight through and back out to my car. I think about all the times I've been abruptly pulled back into awareness from my fog.

By the time my friend calls to tell me he is done, I'm already back at the hotel, waiting in the circle at the hotel. Ready to get back home so I can be there to calm the fear when it returns.

Johnny's Inspiration

My friend Alysia told me about a graphic organizer app for the iPad that is on sale today, and it looked like something that would be helpful for James down the road, so I downloaded it. And promptly forgot about it.

Since today was parent pick up for both boys followed by double header activities, I threw the iPad in the car to keep them from driving me crazy amuse them on the drive crossing the city back and forth in afternoon traffic.

Johnny noticed the app right away and asked what it was. "Oh, it is something to help with homework and writing papers" I answered without paying much attention, because honestly I was too busy wishing I picked up an iced latte for the ride. I assumed he went straight to playing his favorite Toca Boca apps.

But when I got to James' school and took back the iPad to put it away, I saw this:

AND this:

Who says he needs organized religion?
I think he's got it all pretty well covered right here...



Yeah, Wow.

So for $6.99 and a tip from a smart friend, I got an app that might help my ASD son who is like a victim of torture when it comes to formulating his own theories and then having to try to communicate them, PLUS I got an added bonus of a tool that his 7 year old brother (with a potential god complex) can use to document all the processes and theories he feels he needs to tell everyone he knows perfectly. Since he spends most of his time explaining these to me in great detail, maybe if he has it in writing he won't end up exasperated when I inadvertently stop paying attention halfway through.

Well done Inspiration Maps. If your kids are anything like mine, Johnny god help you, go get the app today before it goes back up to the full (double) price. Easily one of the best apps since the best barrier breakdown ever: Angry Birds.

The Conspiracy Over Three Cornered Hats

Johnny is studying Colonial America in 1st grade, and is really, REALLY excited about it (that is probably material for a whole host of spinoff posts right there. Stay tuned for the few years to come. They should be very interesting...)

He even gave me some books he illustrated about Colonial America for Mother's Day, and he couldn't wait to read them with me and show me everything he's learned.

He even colored some of the key words in purple so I would understand.

He was extra excited this morning because today he was going to be sit in a small group with his teacher and make a Colonial American 3 cornered hat.

James doesn't take things like this very well. He is ALWAYS concerned that someone is going to take something away from him, or that he is being left out of something amazing and "the other guy" is going to get that something that he won't.

It doesn't matter what it is. It can be one extra brown M&M in his friend's bowl, or that his homework lasts longer than Johnny's even though Johnny started earlier.

He doesn't even really care what it is. He makes up all sorts of imaginary scenarios where some "other guy" gets something that he wants, and then there will be nothing left for him. His brother could be going to the doctor for a shot and James will be upset because maybe, just maybe, Johnny will get a treat after the visit. And then when the next time rolls around that James needs a shot, that treat will be gone.

Since he doesn't understand that "everything turns out even in the long run" and he usually sometimes gets things that his brother doesn't, that thread of reasoning is useless. He'll say he understands, but it doesn't stop his mind from racing through every possible thing he holds near and dear, and how those things will soon be taken from him.

So when Johnny started singing a little song about how he was going to make a Colonial American 3 cornered hat at school, James suddenly spiraled into a meltdown that bordered on comedy of the absurd.

"He's going to make a chocolate 3 cornered hat and there isn't going to be any chocolate left for me!"

What the WHAT?

He was beside himself, convinced there would be no chocolate left. It took almost 10 minutes of me calming him, and Johnny telling him that hats were "actually made of leather not chocolate" (which "actually" seemed more condescending than informative to me, but it seemed to be helping James so I let it go).

When James finally calmed down enough, I thought we were going to make it through the rest of the day OK.

That is, until we walked into his classroom and James blurted out in frustration

"Oh no! A got here first! He's going to finish his math before me and I'm not going to get as much free time!"

No Strings Attached

Another sock torn to shreds.

I found it while folding laundry today. Then I found another. That makes 5 this week, plus 2 pairs of pants in the last few weeks.

James is obsessive about strings on his clothes. If there is a tiny piece of string sticking out anywhere, on any piece of clothing, he needs to remove it. Immediately. If I am not ready with scissors to cut it off, he won't stop pulling it until it is completely removed.

It was hard enough to find socks without toe seams he could feel (yes, I was the one doing the victory dance in the boys' department at Target, thankyouverymuch). But my smugness went away after a few washes, when the strings started to appear.

More than a few times have I arrived at school in the morning to tell him it was time to get out of the car, only to see a sock with a newly pulled hole on one foot and a panicked look on his face. "You don't have another sock? WHY don't you have another sock? Now I can't go to school. NO, I CAN'T NOT THINK ABOUT IT! I'M GOING TO THINK ABOUT IT ALL DAY AND WON'T BE ABLE TO DO MY WORK!"

And I sigh, because I know he is telling the truth.

I tell myself that summer is coming - those glorious days of crocs, shorts and short sleeves. Less clothing means fewer strings to pull, right? Not having to wear socks is a reason to throw a party in this house.

And maybe, just maybe, if he doesn't have to remove a string for a few weeks straight, the obsessiveness will fade a bit and he'll outgrow it by Fall.

But until then, I'll be carrying a tiny pair of scissors for emergency string removal.

Fancy Cars

"What's that car, Mom? Is it fancier than a Lamborghini? is it fancier than a Maserati? Is it fancier than a Ferrari? A Mustang? is it fancier than a DeLorean? Corvette? What's the other one? The one they have in California? Oh yeah, the Hummer stretch limo?"

The questions come furiously. Quickly. The same questions all the time. No matter how many times I answer them, they come back.

It's only 8:30 am. I've been in the car for 1/2 hour after a frenzy of trying to get them ready for school and out the door on time. I'm still tired.

There is barely any time for me to remember the answer I gave yesterday. I wrack my brain, trying to give myself some time to remember the visual list I have in my head of the order of Fancy Cars, but I can't. My brain doesn't work like that, and I am exhausted from trying.

His brain does.

He collects information and catalogs it. He remembers all my answers. ALL OF THEM. If I get them wrong he tells me.

I try to take a sip of my coffee at the red "What about that car? What is that? Have you ever seen that car before? Is it fancier than a Lamborghini? A Maserati?" light.

I don't remind him that we've never seen a lot of those cars on the road, only at the car show. It doesn't matter. These are his benchmarks. He has to go through his list.

Asking him to to be quiet is not an option. Only a few years ago we were begging for this. For him to be interacting. Seems like just yesterday the trip included him screaming to go a specific way, only for "blue house-blue house-blue house-brown house-brown house-brown house-black house-black house-black house".

If there was traffic, or if I had to go a different way, it meant a meltdown.

I remember those days every morning, just when the ride to school across the city starts to get to me. And then I smile and get ready.

It's my turn.

But just before I go, I take a big gulp of coffee and remind myself to actually make a real, printed list for the next ride so I don't get the answer wrong.

"James! Do you see that blue car coming up? It is SO FANCY!"

I Resolve

I've been struggling more than usual the last few weeks. Actually, I've been out of sorts since summer ended. I know there is something I need to do that I'm not.
That in itself is nothing new. I'm a bit of a slacker. I've never had aspirations of grandeur, it has only mattered that I be happy and with the people I love. That has always been enough.

But I don't feel like I am the best mother/ wife/ friend right now.  And I don't understand why. If I want everyone around me to be happy, and I know what they need to become so, what is stopping me from doing whatever I can to I give it to them?

I'm the mom of a child with autism spectrum disorder, sensory processing disorder and severe anxiety. I know he needs structure. I know he needs routines. I know he needs his areas to be free of clutter and easy to navigate. I know he doesn't like surprises. Yet I can't get my act together enough to give him what he needs. In his own home.

My other child has some very similar and sometimes slightly more confusing needs. I'm still trying to figure out how best to help him navigate the world, and it is incredibly upsetting to see him get so frustrated - at both himself and the world around him.

I want to get out of this rut. To be healthy and energetic. To be productive during the day so I can spend quality time with the kids when they are home. Instead I wander around the house overwhelmed all day and then look at the clock, realizing that I got nothing done.

Another day wasted when I could have accomplished something to make our lives better.

Then all of a sudden the boys get home and the day is full of transition difficulties and homework struggles and "why doesn't he have as much homework as me" and "I don't want that for dinner" and "why did he get more time to play" and I seriously think my brain is going to explode so I get a glass of wine so much earlier than I planned and I drink it much more quickly than I should because it is only 5 o'clock and Tony won't be home until at least 7.

See how exhausting that is to read? There should be pauses. periods. At least a comma to allow a deep breath and gathering of thoughts that make sense.

That is how I feel a lot of the time. No commas.

My family needs me to make some changes. I know that. James made everything crystal clear yesterday when he tried to get a cookie out of the jar on the counter and knocked things over that were stacked in front of it, because I didn't clean the kitchen as planned.

He lost it. "Why is there so much stuff? There isn't supposed to be stuff in front of the jar! I can't do it like this. You are supposed to move the stuff!"

And he was right.

I know it is just a cookie, so it might sound a bit ridiculous if you don't live in the world of autism and SPD and anxiety. But it isn't at all ridiculous in my world. It is what he needs in order to help him get through a day that is filled with uncertainty and surprises. If I know he needs a smooth transition after a difficult day of holding it together, and all I need to do is clear a path to the cookie jar and I don't do it, then that is a pretty big fail.

So here is my resolution for this year. I have no idea if it will work or if I'll even stick with it, since I've blown off every other one I've ever made in my life. But this one isn't for me. It is for my family.

I'll try, one bit at a time, to get things organized. To get my mind organized.

Clear the clutter. In my house, but more importantly, in my head.

I'm going to try to write about what I'm going through, since that seems to help me organize my thoughts. I'll try to explain how things got this way and where I want to be.

And then I'll try to get there.

The Fear

"Mommy, I don't want you to die before me".

Tears are streaming down his face. He is unable to look at me. He is almost unable to talk, the words are coming out in choked up tears and from behind his hands.

"I want us all to die together. I don't want you to leave me.

I don't ever want to go on an airplane. I might fall out."

He is starting to hyperventilate.

"What if we go off a bridge in our car?  What if there is a driver coming towards us? A bad driver. And he pushes us off the bridge and you can't get me."

He has buried himself in my chest. I can feel his heart pounding.

"What if there is a fire in our house? In my room and you die trying to get to me?"

The words start coming even more furiously, more urgently. 

"What if a robber comes and kidnaps me? What if he looks like you and I don't know he is a stranger?"

I try to reassure him without letting him hear the fear in my own voice. I tell him he will be safe, forever. That I will keep him safe. I make up a special phrase that only he, his brother and I know. I tell him he can ask me to say it anytime and know that I am his real mother. I have to tell him I will not die before him, that we will all go to Heaven together. All of us. Even Chewie and Owen. He does not understand any other alternative. His mind cannot process the thought of being here in this world without me.

The Fear comes out of nowhere. But it always comes, and I don't know who is more impaired by it each time, him or me.

I sit here now, John Lennon's "Beautiful Boy" playing in the background. The song we played at his Christening. The song I sang to him as I put him to bed each night as a baby. The lyrics I know by heart and make me smile to think of him every time I hear it.

I turn my back to them so they can't see my tears. I am so grateful his friend showed up when he did to distract us both. He is smiling now, but his eyes are still bright red.

I feel sick to my stomach. I know my words did nothing to reassure either one of us.

This distraction will be fleeting. The Fear will be back. And although I can protect my son from strangers, bad drivers and fires, I know that I cannot protect him from his own anxiety.

That is my own biggest fear.

Tearing Down the Wall

Yesterday was the first day that there was a hint of winter in the air. So, slacker mom that I am, I finally decided to unpack the pool bag. It was filled with typical things- a few empty bottles of sunscreen, kids' goggles and some toys. While I was taking them, out, I realized what a huge thing it was for me to be doing.

We've never had a "pool bag" before. Filled with typical things.

All the memories of this past summer, and of the last 8 summers, came flooding back, completely overwhelming me.

When James first started Early Intervention and was diagnosed on the autism spectrum, I was sure I could handle it all, and it wouldn't change my parenting style too much. I would keep doing all the same playgroups and would keep him in the world, surrounded by other kids. 

Soon though, I found myself cancelling trips to the aquarium, the children's museum, even the zoo around the corner from our house.

I started building a wall around us with each cancellation. With each "no thanks, I don't think so", the wall got higher and higher. By the time James was 8, I had created a fortress. I kept my boys inside it as much as I could. Summers were spent in the fenced in front yard with an inflatable pool. Outings were limited to therapy appointments and visits with other ASD families.  Always controlled and always with an escape plan in mind.

Poor Johnny was stuck with us even though he desperately wanted to get out. I had to say no to the playdate requests, because I knew I couldn't send him without his brother, and I knew his brother couldn't handle it.

I started to hate summer, and felt horribly guilty for feeling that way. What kind of mom was I that I didn't want to spend those supposed carefree days with my young sons, without the limitations and rules that go along with the school year?

We were becoming prisoners inside that fortress, only I couldn't see it. All I could see was the pain and the fear in James' eyes when confronted with something unexpected outside the wall, and I fiercely wanted to protect him.

This past summer, though, I finally started to break down the wall.

Some friends belonged to a pool club that was totally geared towards kids our boys' age. They suggested we join because Johnny had visited and loved it.  I was hesitant.  It was more like a water park than a pool.  It was huge, and there were so many kids.  I was sure it was going to be an incredibly expensive train wreck, but we decided to try it out, just for Johnny.  As summer got closer, I started dreading it, again.

The first day we went, I watched as Johnny took his brother by the hand and led him around the enormous wave pool.

A few days later, I watched James play with a friend. Splashing. Dunking. Chasing.

The second week, Johnny was scared of the obstacle course and was asking for my help. I got into the pool to hold him steady and heard a friend yell "Hey Smother!  Get outta there!" I laughed and got out to go join my friends, while I watched Johnny struggle in frustration. The next day he did the whole obstacle course. 30 times.

In August, I actually played tennis while my kids were in the wave pool. I don't know whose life I was leading, but it wasn't the one I had for the past 8 years, walled up with my boys away from the world, ruled by autism and anxiety.

We were the first ones in on our last day there, anxiously awaiting the arrival of a new friend and her sons. The pool manager approached James and handed him the keys to the pool. He instructed James to go around to the other side of the wave pool, put the key in the lock box and turn it.  I started to intervene, and I remembered the "Smother" comment. I backed off and held my breath a little.

I watched as James gave me a nervous look and then tentatively walked around the pool by himself. He fumbled and found the key hole, and struggled to turn the key. And he looked up to see the waves start rolling into the pool. He smiled. His brother cheered.

I turned and went to the desk to sign up for next summer.

I know we are always going to face obstacles and challenges, and some times are going to be very, very tough.  But going through the pool bag yesterday, I realized how far James has come over the past 8 years. 

I also realized how far I've come. 

I think now I'm going to be able to tear down the wall, day by day, and let the outside world in.  He's playing soccer this fall, and we are going to try skiing this winter. And for the first time in 8 years, I'm already excited about spending next summer with my boys.

I'm going to keep the pool bag visible though, just for those days when I need a little extra help.

Reaching out of my Comfort Zone, for Good

Before I start, I have to make sure I say 2 things.  I KNOW how lucky I am, even though I tend to whinge (best word ever that I learned from one of my favorite people in the world).  James has his own challenges, but I do not think at all that he is, in any way, shape or form, a challenge.   He and Johnny Drama are my world.  I thank my lucky stars every night that I have them both. 

Also, Tiny Miss, this post was written before you and I talked today, so PLEASE do not think I was trying to get off the phone with you, or hesitate to call me anytime, about anything. xo

Actually, make that 3.  Sorry Tony, but because of what I managed to do today, there is a lot I didn't do.  I know you'll understand, though, and pick up the slack for me. again. xoxo

I was feeling sorry for myself this morning.  And guilty.  Guilty that I watched James get on the bus and tear up, again, while I went back in the house and poured a cup of coffee, still wearing slippers.  I felt like I should have been the one sacrificing, he goes through enough every day without me forcing him to be miserable for the hour before and after school, just so I don't have to drive across the city.

I decided to work out to take my mind off it, and it helped a lot.  

Then I had an even better idea.  I was going to sacrifice my own comfort in order to accomplish something really big this morning.

Anyone who knows me, knows that above all else, my biggest fear is talking on the phone.  I can't do it.  I would rather drive 2 hours to have a 15 minute conversation than just talk on the phone for 15 minutes, even with my own family.  I would rather speak to a room of 100 people than talk on a conference call to 3 (anyone remember how nervous I was for city council testimonies? Yes, talking on the phone is THAT uncomfortable for me).

I would rather do almost anything than talk on the phone (except hold Johnny Drama down while he gets stitches.  I did that once and we both were traumatized.  The security guard thought Johnny was being tortured, and the people in the ER waiting room were all awestruck and horrified when they finally saw us re-appear, sweaty and tear-stained.  If there is a next time, it is agreed that Tony will bring him.  I will even call someone and stay on the phone the whole time they are gone.)

There are too many unknowns on the phone.  I never know what to say.  When I do say something, I'm always afraid it came out terribly wrong and the person I'm talking to will get the wrong idea.  Without facial expressions to guide me, I don't know when I'm crossing the line. 

I go to great lengths to avoid phone conversations.  Texting, email and facebook conveniently allow me to avoid talking on the phone 99% of the time. 

So, this is who I am.  I'm not proud of it, but it's me.  Back to today. 

I'm on the board for Boston Public's School's Special Education Parent Advisory Council, and I offered to check SPEDPAC's voice mail for messages from families that might need assistance.  The mailbox was full with over 43 messages from parents who have no answers to their varied issues and concerns.

So, I fought against every instinct I had, and I picked up my cell phone.  I called them ALL (well, all except the 3 in Spanish, and the 2 others I knew were way of my league.  I was smart enough to pass them on to the appropriate people.)

I left messages for those who didn't answer, and gave them MY cell number.  I told them they could call me anytime.  And I meant it. I am now expecting calls from people I have never heard of before, and they could come at any time.  And I will have to answer.  That makes me incredibly uncomfortable, but at the same time, it makes me feel hopeful.  These parents, who left a message on an automated voice mail asking for help as a last ditch effort hoping someone will listen, will hear a message from a real person telling them they want to help.

For the ones who did answer, I asked them about their children.  I asked what age, what school.  I asked what was going on.  I asked how I could help them.  I suggested they come to the general meeting tonight and share their voice.  I told them to find me so I could meet them.  All of them.

Like I said before, I know how lucky I am.  I have the most amazing family and support system, and I don't know many other parents (of children with or without special needs) who have all I do. I decided to get out of my comfort zone a little bit to offer that support to others. 

I know it doesn't seem like much to hear for many of you (yea, big deal, she made a few phone calls.  wow.)  But for me, it really was HUGE. And by doing it, I gained more than I ever imagined I could today, and I already decided I'm going to offer to check for more messages tomorrow.

Getting to the Heart of the Matter

James' bus was 15 minutes late today.  He got off and immediately melted into tears, completely inconsolable.  I tried to get him to tell me what was wrong and he couldn't speak.

When he finally stopped hyperventilating, he told me the bus went the wrong way.  Then he told me he was the last one on the bus when he is usually the first (There are 5 kids on the bus, he is normally somewhere in the middle).  I explained that sometimes drivers need to go a different way, that he was always safe, but he just started crying harder.  

I asked if he was nervous that he was the only one left, or if he was upset it took longer than it should have. He clung to me, and told me that they forgot about him. He then made up all types of different scenarios as to what led to him being the only child on the bus, and each of them was completely different. Then he told me he can't take the bus anymore because there is always going to be something that happens.

The thing is, because he has trouble expressing himself even on a good day, I have to ask leading questions to coax the story out of him.  And most of the time he takes those questions literally, as if I know what the truth is and am feeding it to him. 

I think he is so traumatized by the anxiety that he can't determine what actually happened yet.  Right now he is running laps in the house with such intensity that it is like he thinks he will fall off the face of the earth if he stops.

So, when you have a child who has great difficulty expressing his own thoughts, and is only comfortable answering straight forward questions, and then that child becomes debilitated by anxiety, how do you get to the root of the problem and figure out a way to move forward when only he is the only one who knows what the trouble is?  Does he even know what the trouble is?

Right now I just need to get him back so we can get through tonight, and all the added pressure that comes with homework and reading (of course it is Tony's super late day at work, so hopefully we won't all spiral completely out of control before he gets home).

Thankfully his teacher understands the anxiety that he gets from nightly homework, so we can take small steps tonight, but I realize that I'm basically putting a band-aid on it instead of finding a way to get to the heart of the matter. 

The problem is, I don't know if it is actually possible for us to really get to that.

Life is easy at the Life is good Festival

Yesterday we brought the boys to the Life is Good Music Festival in Canton, MA.  It is right up the road from us, and I wanted to go last year, but I was afraid with such a large scale event, it would be a day filled with meltdowns, frustration, and tears.  And that would just be my own reaction. The potential for my son (who has an Autism Spectrum Disorder, severe anxiety and Sensory Processing Disorder) and his brother (who has emotional challenges that I can't quite figure out) could be far, far worse.

We decided to try it out this year. I went expecting the worst.  We even drove separately from our friends in case we needed to make an escape.  Tony and I weighed the possibility of leaving the festival and coming back in with either or both of the boys if necessary.

Turns out, not only was it unnecessary, it was an easy and fun day for all of us.  We arrived to the parking lots and were amazed at the multiple shuttles waiting to take us to the event, 2 minutes away.  We happened to arrive at the exact same time as other friends, so the boys had pals with them right from the beginning. 

We were greeted by the first of a bazillion volunteers in bright orange shirts and led through the ticketing process.  We didn't have to stop for more than 15 seconds, and that was only because James was already panicking that he didn't have a LIG shirt like his friend and needed one immediately, so I was asking a volunteer to direct me, immediately, to the merchandise booth.



Our little friend staying safe!

After James got his shirt and stopped pulling me around, we filled up our water bottles at the refilling station, and went to what I thought was the most impressive part of the event planning - a bracelet registration for the kiddos.  We were given bracelets for each boy with my cell phone printed on them, and my phone and our names were added to their log next to the serial number on the bracelet.

Normally, it would be hell trying to get either of my boys to wear a bracelet, but because ALL the kids at the festival had them, I was able to convince them easily.  phew.

Even with the bracelets, I'm overly cautious at places with so many people.  It is too easy to lose track of them, especially with each kid pulling in a different direction and wanting completely opposite things and so much sensory input, for everyone, including parents!  Luckily, the space was so spread out and organized that I never felt it was too crowded or out of control.

I thought Johnny would be so excited to dance to his favorite singer, Laurie Berkner, but he had other ideas from the moment he saw the bungee trampoline.  So, after an hour and a half waiting in line (ugh), he finally got his chance.  And you know what?  It was so worth it to see that smile (and he did get to dance to Laurie while waiting, so it was a win-win for him).

Whenever you needed something, there was an orange staff shirt in front of you.  At times it seemed like there were as many volunteers as there were concert goers.  They had staffers running tons of kids' games, and we visited every single one.  I actually feel like I know the woman running the habitrail in the obstacle course because Johnny and his friend rode it so many times.  I should have at least offered her a cold beer. Habitrail guide, I totally owe you!

They even had staff at each garbage station helping determine if what you were throwing out was compostable.  Really.

James did great throughout the whole day.  When he got anxious or had sensory overload, Tony just took him for a change of scenery.  He ran around and explored, he danced, he was grinning ear to ear and sweaty every time I looked at him.  He loved the magic show and building in the "Chill Out tent".

As soon it started getting dark and the kids' activities ended , things got really tough for Johnny and the meltdowns started.  I thought we were going to have to bail early and I would have to (sigh) miss the Avett Brothers.



Love this new bag - good choice Johnny!

Tony and James were happy at our spot with friends watching the show, so Johnny and I wandered around the grounds, exploring even more and dancing around to the music,without the restriction of staying in one area for an hour.  Johnny picked out a cool new bag for me at Lou's Upcycled and checked out the Martin Guitar Jam tent, and then ran into friends playing in the hay.  We spent the end of the Avett Brothers show dancing around, having a hay fight and laughing with friends.

Life was great.

Taking Back September

I love September. The weather is perfect, the smells invoke memories for me of crisp, cool nights playing soccer under the lights, going to football games and hanging out with friends. All the time in the world.

New school year, new opportunities. Pure magic.

Until this year. I started out not being able to get the 10th anniversary of 9/11 out of my head, and now I can't seem to get into a groove.  Back to school month is always a bit chaotic (especially since James has been in 4 schools in the past 5 years) but this year, it has been unbearable, and I haven't wanted to deal with any of it.

Meetings are double booked. Homework trauma started on the first day of school. Both boys started crying about the work and the schedule by day 2. Buses come to different stops at the same time, if they show up at all. I have to drive to Johnny's stop (in my own neighborhood) just so I can get back home for James. The other day it was 2 hours late, and I spent my time switching between transportation police trying to track it down and trying to find a neighbor to get James off his own bus.

All the while, I've been running in circles, accomplishing nothing and getting more frazzled by the moment.

I'm coming undone. I've started obsessing about my younger one's emotional development and behavior, looking for signs that probably are only in my own head.  Tony does his best to salvage the evening when he gets home from work after a long day, but he has 2 hours to read with the boys, eat dinner and try to unwind before he has to get on a conference call.

I know how easy I have it -  I have friends who work demanding full time jobs, then go home to their children, many of whom have severe special needs. These moms juggle more in the few "free" hours at night, or in the morning, than I do during an entire day. One friend does 3 complete loads of laundry (including ironing) before I even get up. Another friend has had 2 meetings a night all week, is triple booked for tomorrow night, and will wake up Friday morning and drive 7 hours to spend a few hours with her grandmother on her 102nd birthday, then jump back in the car to be home Saturday for more meetings and her son's birthday party. Still another has her husband come home from teaching to take care of 5 while she works all night as an EMT for the city.  She comes home and gets one hour sleep before her son wakes her up - and then everyone gets up, and who can possibly get any sleep at that point?  It's a complete loss.

We're all unraveled. September owns us.

Today I took it back. Running around frazzled and tired, I stopped and looked at James, sniffling and sneezing, eyes watery and droopy, but going along with the morning routine. I realized that he needed to stay home from school.

My first reaction was no way. Not today. I'm co- hosting an event tomorrow night to introduce friends to two city councilors I strongly support, and I want it to be fantastic. There is too much to do. He just has a cold, he can handle school. Then I thought about it and realized he was going to get worse if he didn't rest.  We both were, and this was our chance.

We played games all morning and went to Friendly's (his favorite). We walked to Johnny's bus stop and took the long way home, not worrying about having to be somewhere else at the same time.

We didn't do anything special, but we took the day back. And in doing that, I feel like I got September back, for both of us. At least until 6:45 am.

Help Him

Today was James' first day of school.  I knew he would be anxious, so I tried to make everything as low key as I could, but it was a day filled with trials.

The rain was pounding, and his bus never showed.  Driving to school he started melting down. 

His clothes were uncomfortable. his feet were wet. His throat hurt. He was too tired. It was going to take too long to get to school.  He was going to be late, so he shouldn't go at all.  He was about to throw up.

I managed to get him in the door and he was whisked away to class.  I went back out in the rain, hoping that things would turn for the better.

And I waited.

When his bus didn't arrive home on time, I waited.  And paced.  When it finally got to our house 35 minutes late, I asked if it had left school late.  No?  I tried not to sound surprised, like I thought an hour and a half was a normal length of time for a bus ride home.

I let him play on my iPad, trying to make sure he was relaxed before starting his work.  Homework is always a struggle for us, and causes meltdowns daily. We've learned to handle it by taking a lot of sensory breaks for him to run laps and re-organize.

I took a look at the homework sheet -- it was a list of 10 basic questions to let his new teacher get to know him better.  phew.  We would ease our way into the year.

Little did I realize the firestorm that was brewing inside him.  At the 1st question, he began to tear up.  By the third question, he was screaming and crying uncontrollably.  He screamed "I QUIT" repeatedly at the top of his lungs and took swings at the air, trying desperately to take his frustration out on something.  On anything.

I'm used to the tears, but the anger and outbursts are new this summer.  We took a break and talked about the questions, about how he could answer them.  I agreed to help him with ideas and spelling, if he would pick an answer from the ideas and choose the words himself. 

We made it through a few questions at a time, each one adding more fuel to his internal fire.  By the time we got to the 10th question, we were both a complete mess, although I was trying my best not to show it. 

The 10th question is the only one he answered on his own.

The Real Breakthrough at the Beach

When I first started writing this blog about our journey back in April,  I thought I would do a little autism awareness project and get some people to understand kids like James (and their families) a little bit better.  I never expected it to become so important to me.  I've found that telling our story is both empowering and healing, and I feel a million times better about myself as both a parent and a person since I've started writing.

I wonder if James discovered the same thing about the power of communication. 

Last week James and I had our most meaningful conversation ever, and I posted about how proud I was of him to be able to communicate his feelings to me for the first time (A Wave of Words, An Ocean of Meaning).  Now understanding why he was so unhappy at the beach, I was perfectly content to plan future vacations near pools.

Then last Friday we were invited to spend the day with friends on the Cape.  Hurricane Irene was on her way up, and I knew the waves were going to be rough, so I asked if we could go to a bayside beach.  When we got there and I saw how excited her kids were to go to a beach with waves, I reluctantly agreed, expecting the day to be a long one.

It was windy and hazy.  The waves were taller than James.  Hanging out just 30 yards off shore were the two most enormous seals I've ever seen.  People were talking about sharks, and the Coast Guard had both a boat and helicopter scanning the surf.

Standing no more than ankle deep in the water, James' gripped my hand so hard it hurt.  I envisioned how the rest of the day was going to go, and sighed. 

An hour later, I once again experienced the healing and empowerment that can come with telling one's story. 

This was what I saw. I'll never forget how beautiful that moment was.
(look for James in the orange shirt.  Johnny is in yellow).

A Wave of Words, an Ocean of Meaning

When James was diagnosed with Sensory Processing Disorder (SPD), it was explained to me like this:

Imagine he is placed in a dentist chair along side a "typically developing" child.  The chairs drop slightly, unexpectedly.  Both children would have the same reaction of surprise and fear.  If it is repeated numerous times,  the typical child would be less affected each time.  He would anticipate the movement of the chair and adjust accordingly to plan for it.  James' reaction (or any other child with SPD) would be just as extreme each time it happened.

No matter how many times it happens, if feels exactly like it did the first time.

When a child is unable to regulate himself, it is difficult for him to explain why.  When that child also has an autism spectrum disorder that limits his ability to communicate feelings, he can quickly become distressed.

James has always hated the beach.  He screamed at the sand, the water, the sun, the smells, the seaweed.  I always dreaded beach trips.  The "fabulous family vacation" where we spent our days trying to console James, not understanding exactly what was going on in his head, but knowing he was both terrified and horrified, leaving the beach moments after we arrived or holding him the entire time.

As he grew, he still hated the beach, and each season brought the same anxiety.  I couldn't bring both boys by myself because of James' reaction, so our attempts to re acclimate him to it were few and far between.  We'd finally get to the point at the end of the summer where he could tolerate it, and even start having fun on the edge of the surf (although he'd never actually go in).   Then we'd start all over again the following year.

Last weekend, we brought the boys to the beach to visit good friends with boys close in age to ours.  I was on alert as soon as we stepped on to the hot beach, expecting the worst.  He complained a lot, but there was nothing to indicate that he was in distress.  I started to relax a little bit as he started running back and forth on the edge of the water, playing with the others.

The other boys wanted to swim out to the floating dock, so James and I stayed behind and watched them swim happily away with the other grownups.  I tried to engage him, but got nothing.  Finally, I gave up and let him play on my phone, and sat there wondering if we were ever going to get past this point, or if he would end up always playing video games in a chair, me sitting beside him, both of us feeling left out.

Then, I remembered a time when I wanted James to tell me what he did at school and he wouldn't answer.  I gave up and he started to draw.  While he was drawing elaborate mazes, he started to answer the questions I had asked. They were simple answers, not incredibly insightful, but they were answers.  I remembered thinking at the time that he was able to answer because the pressure was off.  He was busy doing an activity that calmed him, and could talk down to his mazes, instead of having to look at me and try to read expressions he couldn't process.  

I decided to try it again now that he was occupied.  I didn't expect much more than "I don't want to talk about it" when I asked why he didn't like the water, but the words that poured out of him blew me away.

"It is too big, I'm scared.  It is too deep. I can't see or touch the ground.   There is seaweed in here.  I don't like it to touch me.  I like pools better, I can see what is happening. I don't like big pools, only little ones.  And I don't like sand.  It feels hot and scratchy under my feet.  I don't like to walk on it.  I like to walk on the ground more.  I like the ground around the pool better, it doesn't bother my feet."

His feelings came spilling out like we talked about our emotions all the time, yet it was the first time he'd ever been able to tell me WHY something upset him. 
James was able to tell me why.  If he can continue to communicate why, then we can help him find the tools to regulate himself.  

And when the chair falls again, although it will be surprising, it might not be distressing.

"He Just Looked at Me. He Doesn't have Autism"

We went to see a new pharmacologist to talk about medicine for my son's anxiety. I went through the usual 5 minute intro about our journey with PDD-NOS, anxiety and sensory processing disorder.

The doctor was nice and seemed understanding, but then he said it.

"He just looked at me. He doesn't have Autism".

I think I stammered. I told him I feel blessed that my son is high functioning and tries so hard to make connections with others.  I told him what we've worked on, and how far he's come, and then the challenges he (and we) still face. I thought he understood, but I left feeling uneasy that a neuro-psychologist just casually "undiagnosed" my son minutes after listening to me while watching him out of the corner of his eye.

A month later, we went back for the follow up.  The doctor looked at James, just a few minutes in the room but totally focused on putting together a magnetic game, asking the same questions over and over, and showing an uncanny memory at the placement of random objects in the Dr's office.

Then the doctor looked at me.

"You know what Autism is right?  It is lack of reciprocity.  DO YOU KNOW WHAT THAT MEANS?"

I winced.  It felt like he was yelling at me.

And then the bombshell:

"Are you really attached to that particular label?"

I think I said something like "you can call him a purple people-eater if you want, as long as he gets access to the services that are helping him so much", but I really can't remember because I was too busy screaming inside. 

Screaming at the doctor for not seeing what breaks my heart on a daily basis, but mostly screaming at myself for not standing up to him, and for allowing a person, after 10 minutes, to make me second guess myself and everything I've done to try and help my child.

Instead of slinking out of there feeling sick and guilty, like I just discovered I was either a Munchausen by proxy patient on an episode of "House" or the direct target of Denis Leary's next book, I wish I stayed in that office and said this:

REALLY? Do you think I actually want my son to be labeled with autism? Do you think it makes me happy to watch him struggle daily to fit in? To see how uncomfortable other children are around him when he tries to play with them?  To watch adults get frustrated when he gets in their face and asks them the same question over and over again even though they've answered it?  To have to repeatedly tell him to look at whoever is talking to him, or to continually tell him to answer whatever question has been asked of him?

Do you think I wanted him to realize at the age 8 that he is always going to be "different" from his brother and other kids his age?  To know things that are so easy for his little brother to do will always be challenging for him?  Playing sports, playing with friends, even telling jokes?

Do you think I dismiss the fact that he laughs when other people cry, or that he doesn't understand when people become annoyed with him, or are teasing him?

Oh, actually, yes.  After living this for just about all of the past 8 years, I guess I am "attached to this particular label".

I am attached to it because my son does exhibit that characteristic about reciprocity.   For my son, and many others with ASD,  lack of reciprocity is not for lack of trying.  Although some may try desperately, they are unable to reciprocate without constant assistance and significant effort.  Some of them, like my son, are able to achieve a basic level of back and forth, but they have to work constantly to recreate even a simplistic version what you and I do without even a second thought. 

I am attached to this label because it is a word that has meaning for people who are just getting to know my son, so that they can better communicate with him, and understand the support he needs to successfully reciprocate. 

I am also attached to it because I think it is going to be a very powerful word for my son as he grows, and I believe that he will be able to use the label on his own terms -- as a crutch if necessary when he feels like he is left out or lost, but hopefully more often to help develop relationships that are comfortable for him, with people who will understand and respect him.

As for me personally, I am attached to it because I can use it as a tool to teach others that people cannot be pigeonholed into a 3 word definition in order to understand them, nor can they be "figured out" by observation, and that anyone who tries to do so is lacking in empathy, respect and, yes, reciprocity.

"All I need is this. And this. I don't need anything more. Except this."

Remember that scene from The Jerk, where Navin tells Marie that the ashtray is the only thing he needs?

And that's the only thing I need is this. I don't need this or this. Just this ashtray... And this paddle game. - The ashtray and the paddle game and that's all I need... And this remote control. - The ashtray, the paddle game, and the remote control, and that's all I need... And these matches. - The ashtray, and these matches, and the remote control, and the paddle ball...

That is James.  Well, just with more kid-friendly objects.   He is a compulsive collector of completely random objects - all that he desperately can not do without, none that he actually does anything with. 

He used to be obsessed with things that were the same.  From the time he could grasp objects, he would always have 2 of the same thing.  Didn't matter what they were, but they had to be a match- one for each hand.  Random objects that came in 2s. 

He got a Noah's Ark Little People play set when he turned 1 and I cringed.   If he had one animal from the ark, he HAD to have the other.  He always knew where to find the other, even if I didn't.  He would lead me around, at the age of 1, to collect the match, and he wouldn't stop until he got it. 

When he found out my next door neighbor had a drawer full of markers, he would pull me to her house daily to pick new ones.  He carried 2 markers around for a year.  Not the same ones, just grabbed two to have with him wherever he was.

He started taking a social skills class at 3, and each child got a prize at the end of class.  The first week he picked out a red plastic duck.  The second week he picked out a blue plastic duck.  The third week, green.  The fourth week?  Yup, pink.  The fifth week they focused on "re-directing" (he still ended up with a duck though).

As he got older, the collections changed.  There didn't have to be 2 of anything.  They just seemed to have to be "something".  Trinkets.  A bouncy ball, or the die from the game, or even the empty plastic cup.  He would carry these objects around like they were treasures. 

I remember one very long, frustrating day with a lot of meltdowns and attempts to re-direct.  As Tony and I both seemed about to lose it, we looked over at James, who was trying to hang on to at least 15 random objects at the same time.  We both burst out laughing.  I think it was the empty water bottle he kept dropping and frantically picking back up that put us over the edge and had us reciting that Steve Martin scene.

During his next phase of collecting, he would put everything in little buckets (preferably with lids) and keep them on the shelf behind his spot on the couch.  Every so often throughout the day, he would check to make sure it was all still there.  At the end of the day I would dump the contents into a drawer.  

As time went on, he just started putting most of the things straight into the drawer (and then labeled it with his name). 

Now when he runs in the house with a new object, he goes straight for the drawer.  The new treasure is placed inside and the drawer shut, and then checked and rechecked.  Sometimes I don't even think he looks at it first, but I can never get rid of any of his collection, because he remembers everything he's ever added to it. 

When the drawer gets too full, I move the contents into a random box in my room.  He's OK with that as long as I tell him I'm doing it, and he can see the box with his stuff in it.  Then he starts over again with the empty drawer. 

Months later he'll ask me about that "blue ball" and I'm expected to know exactly which one and where it is.  Most of the time I actually do, but only because I've experienced what happens when I don't.

If he's recently added to his treasure chest and we have to go out,  he'll remind me to lock the house, check the alarm and make sure the gate is shut.  He has about 7 soccer balls, but cries about bringing one to practice because someone else might use it.  After I pull a Mom and tell him he has to bring a ball, he wants to bring Johnny's, not his.  If he does bring his own, he spends all practice making sure that I have it in my possession if it isn't in his.

Collections aren't limited to objects.  He makes videos.  Thousands of them.  Mostly about traffic lights or our cats, but they all need to be saved and cataloged.  He collects TV shows, begging for them to be saved to our DVR even though he doesn't really like TV and has rarely gone back to watch one.  He notices if I erase one though. 

He collects apps on the iTouch.  He collects songs.  He needs to have them.  Since his love of music and games is obviously real and gives him confidence, I've always tried to nurture that.  Games and downloaded songs become rewards, until soon it becomes clear that he is getting obsessive about the collection itself and not the content.  That is when I have to start denying him, and that withdrawal is painful for both of us.

As the new meds start to help with his anxieties, we'll begin to address the hoading issues more directly and try to help him develop some skills to overcome his need to collect and control.  I know he will always continue to collect, but hopefully we can lead him in a direction where the collection doesn't overwhelm him (or us!)

But for now, I know where the blue bouncy ball is.  And the ticket from the deli counter last month.  And the string that was once attached to the balloon he got at a party last year.  Just don't ask me where my wallet or the keys to the car are right now, because I don't have the energy to think about it and quite honestly, I couldn't care less.