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.