Rollercoaster of love…

Bryan is the only person on the planet who loses weight in Orlando. He typically does not eat breakfast; his anxiety level is so high. He didn’t puke but often times will in the mornings before we go to a park. We went to Legoland this weekend. Of course he is totally excited to go and is looking forward to it. He was great when we get to the hotel, we went out for dinner and he was fine. Next day, woke up at 5 and he paces. He paces and repeats whatever is in his head. Not only is it the opposite of fun to deal with this beginning at 5 am, but the angst as a parent to take your kid to a fun thing to do to watch him physically unable to relax is beyond. We got to the park when it opened and he loves to look at the map and his visual skills help him cope.  He loves the rollercoasters and although I’m not such a fan of them these days, when he asks me to go with him, I go. The smiles and glow that come over him is worth any wrenched neck or nausea i may endure.  Truthfully he did much better than in previous years considering he was never at this park before and never at this hotel. Slowly he starts to relax a little. He ate a little bit of lunch and was able to do most things at the park. We went back to the hotel and the boys went swimming. We went to the same restaurant as the night before; not a great variety in Lake Wales, FL so we figured why not go with what works. By dinner he is hungry, which is a great sign.  We talked about why he was anxious or nervous and he cannot articulate it at that moment. But unlike previous years, the questions stick and at times a little gem comes out to let you know he is thinking and growing emotionally. When we got back to the hotel from dinner on Friday night the boys (yes this includes Earl) were horsing around on our bed. Ok men, listen to this, women do not like when boys are doing horseplay because they know someone will end up crying or Mommy will get kicked. I begged them to stop. They didn’t. I was exhausted, spent, etc. I went out into the hallway in my PJs to cool down. I was so tired I almost fell asleep in the hall. Finally I came back in and the boys were in their beds and I went to sleep. In the morning, Bryan was up at 5 and came over to me and said “Mom you were mad at us last night”. He got it, can’t say everyone else did, but he did. I told him I wasn’t mad at him but he was clued in to my emotions and that got me motivated for the day.

On the ride home Earl and I got into an unpleasant argument (oxymoron) and it was unfortunate because we were in the car with the boys. Bryan is so funny. We have a DVD player in the car and he puts the headphones on crooked with the headphones on one ear and off the other. He doesn’t want to miss anything!! We got to a rest stop to use the bathroom and I got out with the boys. Bryan said “Daddy was mad with you.” I told him everything would be ok and he gave me such a hug and kiss. He knew I needed it. When we got home I decided to go to early voting. I brought Jason with me so we could have some time to talk and I could reassure him after the ugliness in the car. So we talked about some stuff and he says to me, “Mom I love Bryan’s autism.” I said “what?” Now this where it gets interesting. I asked him why and he said “Because it makes us better people. (ok a little bit of stuff he hears he repeats, clearly). I mean Bryan is so funny and he makes us laugh and he makes us happy.” I almost had to pull over from sobbing. I know what he means. When things get tough Bryan can distract us, jolt us, and or make us get out of ourselves.

He’s a play-a

Sometimes I need to say that I am a damn lucky person. Today is one of those days. Bryan is doing well in middle school; he switched classes and his new teacher has that mushiness and love for the kids that we know works well for him. Although he needs lots of discipline and structure, when he feels welcomed and loved he thrives. Not rocket science, but happy to report it exists in our world. Bryan has been participating in Parkland Buddies Sports for about 5 years. This is a community based program where kids ages 10 and up volunteer to work with special needs children for a particular sport. When he started as a player he was very whiny and cried a lot. He did a time check literally every five minutes. We started with Soccer which he seemed to genuinely like, but he couldn’t focus and it was hot and he didn’t really know what was expected of him. Bryan is currently doing Flag Football Buddies and Running Buddies. He has also done Soccer, Tennis, and Basketball. We do as many as our schedule permits. It’s funny but the actual sport that is played seems to be the least important thing.

Here are a few things I love about this program:

  • Acceptance: there are kids there who scream, flap, cry, hit, bite, etc. No one even flinches. Yay!
  • Awareness: many of the kids that are volunteers in the program have had little or no contact with any form of special needs kids. Or if they did, it was at school, at a distance, not in their faces. They learn that just because a kid has some issues, they are still kids and can be fun and a friend.
  • Fun: the kids have fun. The coaches and the players high-five each other. Bryan will come by and show me his thumbs up or will be giggling at times.
  • Friendship: One of my favorite things is to watch the kids grow from year to year. When Bryan first started with Soccer he was a little kid, about 8. He had the same buddy for four years until his buddy graduated from High School. When they started they were both kind of small. Last year at Soccer they were both big hunky boys. Yumminess. I love to see Bryan running on the field, just a little sweat on his top lip and hairline. So typical, so natural, so healthy.
  • Laughter: there is laughter at these events. The coaches doing silly stretches to current music that I find annoying, catchy, and too loud all at the same time. Ok I like Justin Bieber and Big Time Rush. (don’t tell anyone). Everyone just gets loose and the energy is electric!
  • Support: I cannot count the number of times I have come to one of these events in tears. Sometimes it is sleep deprivation on top of frustration on top of perseveration blah blah blah. I never leave in tears. There is always someone there to give you a hug, provide empathy, or give you a super good suggestion. It’s a safe haven for parents.
  • Coaches: These people take so much time out of their lives to run these programs and show up week after week. Many of them do not have special needs kids and do this because it’s good for their hearts. Others have special needs kids but rather than sitting on the sidelines they want to help other kids too. How selfless and inspirational!

Bryan has great hand-eye coordination. He can connect with a soccer ball, baseball, and catch a football. Does he care? Nope, but he does care that someone on the field thinks he did a great job. Last week one of our coaches told him he did “exceptional”. He did not know what that word meant. So we told him it means he did great. He offered up his typical “I did a great job at football.” All smiles… touchdown!!

Less Chit Chat, More Combat!!

Have you ever watched Ben 10? Cartoon Network show starring a boy, Ben, his cousin Gwen, and their grandfather, Max. They are travelling around for the summer in an RV, affectionately called the Rust Bucket, since it’s old and rusty. Ben finds a watch called the Omnitrix and it allows him to transform into 10 different ass kicking aliens. The show has been on a long time and they have had 3 or 4 series as Ben and Gwen get older. In the early days they were fighting some aliens that were threatening Earth’s survival and Ben was trying to learn info from a somewhat friendly alien while others were attacking. Gwen, in her sassy 10 year old style says to Ben, “Hey, less chit chat, more combat”. I am not sure why but that tickled me. I say that to Jason when he is dilly dallying on something or not paying attention and action is required. The young Gwen is a take charge kind of female preteen.

I am surrounded by a lot of highly motivated women who are all about action or combat. I am not sure if these women knew they had it in them, but when you have a special needs child, your inner Wonder Woman may take over. I am in awe of these women, one who is starting a school, one who has their own business whose partial proceeds go to autism awareness, another who has been a chairperson for the local autism walk, etc. They have reached beyond their motherhood to see the big picture. Change and awareness is a must and for them it’s personal. It’s the kind of get off of your butt and do it attitude that I am attracted to in friends and people. Admittedly, the slackers turn me off. It’s your kid, how much more motivation do you need??? I strive to be one of these warrior moms. I am not sure why but it is important to me that when Bryan and Jason are grown up and they are thinking about me that they think I did what needed to be done for them… and then some. I want them to know that if you make up your mind to help yourself, you can!!! No excuses.

I try to steer clear of politics in my blog although I don’t think you need to be a brain surgeon to know how I’m leaning.I do not agree 100% with what either side says or does and as many of us feel, the media circus and campaign process are a turn off. However, I just don’t get women who support Romney and Ryan. I am not partisan. I am not registered with a party. I am registered with my brain. I vote based on what I think is common sense for the issues at hand and would have no problem voting for any party if I believed in the candidate. (I kind of liked John McCain in the early part of his campaign but when he chose Sarah Palin he completely lost me). I don’t know how you can support a candidate who does not support your right to choose what you do with your body. I am not pro-abortion by any stretch of the imagination. I have had 3 miscarriages, and even when I knew the baby was not alive I had trouble with a D&C. Do you have any idea what it is like to be waiting to get a D&C and they hand you a “Certificate of fetal death” form to sign?” But to tell me I can’t do with my body what I think is right for me and for my family is preposterous in modern times. I get that some people believe that abortions are wrong and in conflict with their religious beliefs. I respect that opinion and their right to act on it, but why can’t they respect mine? Religion dictating policy is exactly why we left England in the 1700s. And who doesn’t support equal pay for women? Why not support the Lily Ledbetter Act. I just don’t understand. I am a professional woman and I work very hard. On what planet is it ok to not make the same amount of money as a male counterpart? Why would I vote for a MAN who won’t support equal pay? What truly amazes is me is the naiveté of some women that think their rights won’t go away or things won’t change. Bring back women like Susan B. Anthony who are willing to stand up and say we are valuable. If she behaved like the women in today’s world, we still wouldn’t have the right to vote. And if you have a daughter, what message do you send when you say, sorry honey, I voted for the guy who won’t allow you to choose for your body. And sorry, honey, I don’t think your work is as valuable as your brothers??? Or oops, didn’t realize the President would be selecting Supreme Court Justices that could change rights. Less chit chat, more combat.

The Circle of Life

Had lunch yesterday with a friend from work who has a very young child recently diagnosed with autism. We go to a lot of meetings together but rarely get time to talk about all of our autism stuff. I am trying to help her navigate therapy, insurance, doctors, school etc. I am way more than happy to do this; it is part of my journey with autism to help those that come after me as I learned from those that came before me. I am happy to report that this Mom has it going on and is on a solid track with schooling, therapy etc. I tried to offer up some lessons learned and I appreciate the ability to offer my experience. If I knew then what I know now…

1. ABA, get it early and often. The advice back in Bryan’s early days was, “it’s so rigid, it’s so tough, let’s wait and see if he really needs it”. UGH UGH UGH. He really needed it!!!! Once we started with this we started seeing changes. If I could turn back time… shut up Cher.

2. Don’t sweat the small stuff-this is clearly easier said than done. When they are little you want to solve everything and you want immediate progress and you want every single thing that you are entitled to at that exact moment. When Bryan was little we wanted him to be mainstreamed, “cured”, etc. Experience and exhaustion teach you to accept your child as they are and pace yourself. The wheels  may be moving  in slow motion, but at least they are moving in the right direction. Chocolate and vodka both help; together and separately.

3. Never, ever,  underestimate the power of unconditional love. Love them, love their flapping,  pinching, biting, and yelling random thoughts and all of their autism. They need it and it’s ok to have a child that is different. You won’t die of embarrassment, and if nothing else, your priorities will clearly shift in the right direction.

4. Take notice!!! On Saturday sitting at Football Buddies I was reminded of how well Bryan is handling this activity. I know that he is doing  better, but it’s always great to hear from someone objective that they noticed your child is making progress. Also listen to those whose kids are older than yours; they will tell you, “when my child was your child’s age he or she couldn’t do x or y and now look at them”. Hope is alive and well and living in your neighborhood, embrace it warmly.

The great thing about helping others on this crazy journey is that it helps us too. It reminds us of who we are and who we want to be. It reminds me to go home and shut up and give Bryan a big juicy kiss and hug. It reminds me to go watch silly tv with him and do playstation and Wii and embrace the 12 year old he is and not to mourn the boy he is not.  It also jolts me out of anything I may be coasting on, like behavioral issues or school issues. Never shed your mommy/advocate cape, never rest on your mommy laurels.

Will over skill

Love that expression. Credit goes to Muhammad Ali. I repeat this over and over in my head, like a mantra of sorts. It is the evolved version of the little red wagon and “I think I can”. I need to accomplish so much on a daily basis. I try to push myself to check things off a list every day. I do not always make lists on paper,but I always make mental lists. Family/husband, work, Bar Mitzvah, school stuff, medical stuff, exercise, diet, etc. I have to seriously work on myself every single day not to stay in bed and pull the covers over my head. I remind myself that I am capable. I try to think of my boys and tell myself they deserve a real Mom; not some lame ass.

Somehow when I think of Muhammad Ali and this great expression I also have a visual of LL Cool J (those abs are killer) singing “Momma said knock you out”. It’s a good one when you need to kick some butt; perhaps with a school administrator or obnoxious stranger staring you down when you are in a store with a loud kid with autism. For those of you who remember those Robert Stack commercials with him daring you to knock the batteries off his shoulder, I do walk around the same way. I let people know with my eyes and my demeanor in any public situation that if you even look at me or my kid like you want to say something, go away, back off. It won’t be pretty if you don’t. Anyway, I’m straying from the topic at hand.

I think this expression really applies to Bryan as well. He tries soooooo hard to please. He can literally will himself to behave well, to work hard, to focus when it really really matters. Or he can respond to an incentive if positioned properly. It is so tough for him sometimes but he does it. If nothing else, this truly inspires me and wills me to work harder. Perhaps his behavior is a model for me. Something to think about. This whole week I have been feeling sluggish, reactive not proactive. I don’t like that feeling at all. It’s like going through the motions without bringing your A game. I’ve watched a bit of the Dancing with the Stars all-star show. I see how some of the competitors like Apollo Ono, Emmitt Smith and Shawn Johnson bring their competitive nature to everything they do. They literally will themselves to win by staying focused. I need to channel that energy. I don’t have any mad skills at any one thing, but where I lack the skill, I definitely have the will. Back to the list.

There will be confusion and delay

Do you know Thomas the Tank Engine? Great character but there are some very quirky things about it. First of all, why do they  have Alec Baldwin narrating the stories and doing the voices? It’s ok for the leader of the railroad, Sir Topham Hatt, the one who says “there will be confusion and delay” in a very deep voice, but does Alec also have to be the voice for Lady Hat, Sir Topham Hatt’s wife? So weird. “They” say that Thomas is a good cartoon for children with autism because the faces on the rail cars are very expressive and it helps the kids to read faces better; some people with autism have trouble reading emotions.  Bryan, however, has no trouble reading emotions, particularly Earl’s, Jason’s or mine. He knows from our voices, our facial expressions, and our demeanor exactly where we are on the emotional spectrum, but he does also see our faces and know what’s happening.  In the overall scheme of life, it’s great that he has this skill and hopefully it will help him navigate all sorts of relationships as he grows up. If you know him at all, his signature line of “are you happy” is more than just a platitude; he wants and needs to know. And if you are not happy, and especially not happy with him, well his anxiety will go through the roof.  It is heart wrenching to watch him sometimes. His facial expressions are super clear. He can have the most engaging smile and giggle or he can have a  troubled, pained look that I see on a lot of kids with autism. It is almost as if they know they have to do something or shouldn’t do something but just can’t figure out how to get there or how to control themselves.  For Bryan, his anxiety manifests in repetitive language and questions. We try to get him to think before speaking. We try to give him a visual aid like an index card with his schedule. Unfortunately, it only amounts to more confusion and delay. He gets more anxious when he thinks we are upset with him for repeating and we get more anxious when he repeats so much. I seriously rack my brain to figure out how to get him out of this. We try to distract him, we try to reassure him, we try to show him through our actions that we are trustworthy. He knows but cannot get out of his own way.

Thomas makes an annual appearance. He is really for little kids but every now and then I hear that signature “there will be confusion and delay” or the music from the cartoon that Bryan loves to sing. Bryan likes when I imitate Sir Topham Hatt so that makes it fun and silly too.  I love to hear Bryan sing but of course then I worry if he’s going back to these juvenile cartoons as a form of self soothing. Hmm maybe that’s not so bad?!! Either way when I hear Alec Baldwin Ihave  a chuckle.

Can I get a “T”?

From time to time I look back at some of my blog posts. It sort of gives me a gauge on my psyche. What the hell is going on with me? I need to get a grip!!! When I feel really low I try to remind myself of how truly lucky I am, even though it may not sound that way sometimes. A major reason for the optimistic attitude is the people we surround ourselves with; our peeps!!

You know all of the expressions:

There is no “I” in team

It takes a village

Be a team player

Well this blog is devoted to our team. Who is on the team? Well I am definitely the quarterback, that’s for damn sure. My number one offensive linemen is  Earl and the two best receivers I’ve got are Bryan and Jason. We have a huge team. We have grandparents, aunts, cousins, etc. Earl and I each have great sisters that do the ultimate for us: BABYSIT!!! Our family members are always on the field in various positions. We have some close by friends and some long distance friends that are  reading the plays and offering advice. We have a few coaches and a bunch of special teams positions. We even have some sitters on IR that always come to our rescue. I am always in awe of our team. A few honorable mentions here:

My girl Pammy. How many times can one person talk you in off of the ledge? I don’t want to find out. Our great speech therapist Marcia, our OT Cindy, our Hebrew coach Robin, our former Autism Coach Caryl (she is on our special teams and still assists when needed) our great sitter Arielle and our former sitter and surrogate daughter Mara. We have some real coaches too: special shout out to Jeb and Coach Andy for always laughing at the Bryan-isms. Over the years Michelle has tutored both boys in academics and she too has contributed to our solid team.

One of the best parts of our team is the team spirit. No matter how low I feel one of these team players always holds a pep rally. When we are at our wits end one of them tells us something great about Bryan or us and it just puts us right back in the game. We are not in it for the short term; this is the road to the Superbowl.