He runs to make his mind still, to organize himself and to get rid of the noise from this loud, confusing world. The more he's moved, the more he's introduced patterns and rhythm into his routine. Laps around the house are a daily ritual. He's made it more complex as he's developed, but the basics are the same. There is a pattern of movement -- specific foot patterns based on whatever song or chant he chooses to accompany the run, and he can not be stopped until he is ready to be.

This is James, and this is our story.

Thursday, September 29, 2011

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.

Monday, September 26, 2011

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.

Sunday, September 25, 2011

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.

Wednesday, September 21, 2011

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.

Thursday, September 15, 2011

A New Partnership, and a New Hope

Last night I wrote about the anxiety I was feeling before going to meet with James' doctor to talk about his medication. I got messages from friends from all over offering positive thoughts and strength. Some of them I received right before I went into the room. One included a fight song I could sing as I walked in (and I still am because the song is stuck in my head).

Thank you.

The support I got from all of you made it possible for me walk in the room with confidence. Once I was in there, I was amazed to find out that I had a supportive partner instead of a condescending (well, you guys said it best). He interacted with James and discussed options with me, and we were able to determine the best course of action to take to help my son.

Thank you for listening to me, for encouraging me, and for making me laugh when I most needed it.

I never thought this blog would turn into anything significant, but it has come to mean so much to me. I just looked at the blog stats and there are over 3,000 page views to the stories I've shared about James. The fact that you are willing to read it, and share it with others who you think might relate, is absolutely amazing to me and I appreciate it more than I can ever express.

It also makes me realize how much hope there is for people living with Autism Spectrum Disorder to be heard, understood and respected.  James' story is just one of the hundreds of thousands that there are to be told. All of them as unique as the individuals who have ASD, and all of them just as important as the others.

Going forward, I'm going to focus my attention on helping to tell those stories, because I want to make sure that everyone's voice is heard. I am confident that you will keep reading them, and sharing them, because you've listened to mine. xo to all.

Wednesday, September 14, 2011

The Pit in my Stomach

Sometimes I can't believe that I'm the one who is entrusted with advocating for my child.   Me.  The one who can not engage in a debate, about anything,  because I get flustered when I'm put on the spot or feel judged. 

I'm still not even sure how I convinced my husband to agree to marry me, although I know kidnapping him to a secluded cottage in the Blue Mountains of Australia and providing beer definitely helped.

All this and beer?  Who could say no?

Somehow,  I've managed to help people in my life understand what James needs in order to thrive.  I'm lucky that 99% of the people involved agree with me, or I don't think we would have gotten this far. 

Then there is that other 1%.  The one that I can not find the strength to stand up to and defend my position of what my son needs.  You know the one.  I wrote about him in  He Just Looked At Me. He Doesn't Have Autism. 

I got so much support from your responses after that post.  Many suggested I send the post to him to read (which I did. In my mind).  A few of you had incredibly humorous ideas of how I should respond, and I thank you for providing all manners of potential vindication for my imagination.

Here's the thing.  I have to go see him tomorrow.  Again. 

Tony and I agreed that he would deal with the next appointment while I looked for a new doctor, but James' recent behavior has me concerned enough about the medicine that I need to go.  Tomorrow. 

I'm trying to find the strength, but I'm already flustered just thinking about it, and this pit in my stomach just makes me want to cancel the appointment and hide out in my house.  And although that is how I often deal with my own issues, I can't do that to James.

He is depending on me, and I have been entrusted to be his advocate.

So, tomorrow morning, I'll be back in that small, stifling office, uncomfortable as hell.  But I'll have the copy of that post in my bag. 

Just by having that with me, I will feel like all of you are standing by my side, and that pit in my stomach might just go away so I can help the doctor understand what James needs to thrive.

And if it still doesn't go away, I'll just think of all those other ideas you had...

Thursday, September 8, 2011

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.

Friday, September 2, 2011

Virtual Friendship in Reality

When a friend recently posted on FB that her sons' 1st day of school would be delayed by a week, and asked for ideas of what to do with them so she didn't lose her mind, I immediately responded  that we would be at our pool club and they should hang out with us for the day.

The thing that makes this very, VERY uncommon for me to do is that I had never met her before.  Or her boys.

She writes the wonderful, heartfelt blog, Try Defying Gravity, and our boys are around the same ages.  I love her writing and admire her.  Our stories are similar, and I've told her more than a few times that I feel like she's walked in my shoes.  We became Facebook friends and started sharing more personal stories, so in my mind, she was already my friend.

It wasn't until I realized that I wasn't sure how to pronounce her first name that I understood the enormity of what I had suggested, and how far out of my comfort zone that was.  She was driving an hour (and paying a small fortune) to come for the day.  What if I oversold the pool as a magical wonderland and her kids didn't like it? What if it was a total letdown for her?   And the most nagging question of all - What if I didn't live up to her expectations in real life?

I realized today that I need to learn to trust my instincts and not over-think things (those of you who know me are laughing outright that I just said "over-think" and "me" in the same sentence...) 

She and her boys were so incredibly nice, and we had a great day.  Her oldest went on the slide a hundred times, the obstacle course, the bumper boats and in the wave pool, while her two little ones floated around happily in the wave pool. 

And when my boys checked out completely after about a half hour, and I stressed about them sitting around moping while our guests were swimming without new friends to entertain them, she waved it off and laughed. 

Just like a friend would. 

And I realized then that I didn't need to make the day perfect, it just had to be real.

As Murphy's Law dictates, as soon as it is time to leave, your kids inevitably stop asking when it is time to go.  So even though it was Mario they bonded over instead of the wave pool I hoped for, we stood there for a few extra minutes watching them play together, like they had known each other all summer, and I was happy that I trusted my instincts about friendship.