Veteran’s Day

No I was not in the armed forces. Unless you are Israeli, which I am not, a nice Jewish girl does not serve in the armed forces. I do look good in green though. I am also not a veteran of what people call the war on autism. I am not at war against autism as those of you who read my blog very well know. While not my first choice of things to have, I have embraced it and if anything I am at peace with autism not at war. But I am a veteran of the battle against stereotypes, difficult behaviors, illogical treatments, staring unlookers, judgmental people. 0000002077_i2
As I mentioned in my last blog our family was asked to speak at Bryan’s school to describe what it’s like to raise a child with autism. Earl and Jason left for NY so it was just me representing the family. When I got to the school I didn’t realize that the presenters were going to be some kids (two students with autism/twin girls that were incredibly articulate and charming), a math teacher who spends lunchtime with some kids on the spectrum, a local parent advocate and the school district’s autism specialist.I also didn’t know the audience would be the entire middle school faculty. I knew I had about 5 minutes to speak and I did not write a speech. I am my father’s daughter and I am fairly good off the cuff. I had some points that I wanted to make so I did mentally prepare. In my head things sounded heartfelt which was the point. When I was done I went back to my seat in the audience and struggled to hold it together. Who would ever imagine that I would be on a stage talking about the ups and downs of raising a special needs child? Certainly not me. I truly can’t believe that this girl, the person who wasn’t sure they wanted to even have a child was up there telling them about what gift it is to have a special needs child. Evolution? Maturity? I felt myself walking down the steps from the stage holding in tears that had meaning far beyond what was appropriate. I literally sat in the chair sniffling and one of the teachers leaned forward and whispered something sweet to me. Actually several faculty members stopped me to say how much they love Bryan. Mommy heaven, pure and simple! I do not get nervous from public speaking but I was so confounded with emotion as I climbed down the steps it was as if it hit me for the first time that I was the mother of a special needs child. If I get outside of my head I am still amazed that this is my life and how much I have embraced this and on many levels I am proud of myself for being able to grow up enough to be Bryan’s mom. He deserves it. I wonder if I had him in my 20s when I was busy going to Fire Island for the summer or taking vacations at Club Med if I would’ve been mature enough to handle this; I honestly don’t think so but it doesn’t matter because it didn’t happen that way. I could lie and say I would’ve risen to the occasion but we will never know so why lie?
In my head and heart I am spinning. Getting the diagnosis or the news, well, it’s heartbreak, plain and simple. Living it day to day is not much different. Each time your child does not do what other typical kids do you feel it, you mourn, you agonize. That’s why I always say it’s like heartbreak. And not the heartbreak you feel when your team doesn’t make the playoffs or loses the superbowl. It’s more like when your first love breaks your heart or when someone you love betrays you. The sucker punch to the gut. You know, the one when you were vulnerable and had your guard down or your head turned. I have often felt over the years that a scab has formed or scar tissue; part of that may be because we surround ourselves with other kids with autism. Then you go someplace and you are with only typical kids, and ripppppppppppppppppp, open wound, call 911. Those days, thankfully, are fewer and farther apart. I am no longer an enlisted soldier in my own private armed forces, I have moved up within the ranks.
But those lows, like most things in life are counterbalanced by the highs. I tried to give the audience a glimpse of some of the positives too. Like you know that feeling when you’ve been married for a long time and you and your spouse are watching a movie or out with friends and you guys get the same joke or you catch each other’s eyes and you say to yourself, ah, that’s why I married this person. The people connection. That little falling in love again moment. When your kid has autism, there are so many little yet big triumphs that you get that sparky feeling a lot. It was pouring on Thursday night and I was driving the kids home from speech therapy. Bryan would typically say, “it’s raining”. So that’s not a big deal because he’s 13. But instead he said, “It’s raining really hard. I hear thunder and I see lightning. I hope it stops soon.”. So you are thinking big deal. Well I looked in my rear view mirror and caught Jason’s eye and give him a little wink and he gave me a thumbs up. We had a moment. Progress, you see. Jason is a veteran too.
Had Bryan alone all weekend. We had lots of activities and he was fantastic. I can say, without reservation, that I truly enjoyed his company. Can many parents say they would enjoy a weekend alone with their teenage child? We didn’t have long talks, but we enjoyed the ease of being together in our own space, in our routine. Bryan reminded to give him his medicine, did his own growth hormone shots (a jewish doctor in the making perhaps? come on, a girl can dream, we seriously cannot have any more lawyers) and just a lot of love, affection, and positive affirmations. On Saturday night we went to a movie, then out for pizza and then for ice cream. When we were at the pizza place they had “Just the Way You Are” on the radio by Billy Joel. What a freaking sap I am. As Billy’s singing, I love you just the way you are, I had such a lump in my throat. On Sunday afternoon Earl and Jason called from JFK to say they were boarding. Bryan asked to speak to Jason and said “Jason I can’t wait to see you tonight.” My whole body smiled from that one. When we heard the garage door open Bryan and I, plus our two dogs, went outside to greet them. Bryan gets focused so he walked right past Earl and went to open Jason’s car door. He said “Welcome home best buddy!” Earl and I chuckled. That was a new one for us, but a great new Bryan-ism. He said it again to Earl and we all laughed a bit. For Earl and the rest of us veterans, the homecomings are the sweetest.

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One thought on “Veteran’s Day

  1. Tears, tears and more tears…….and lots of inspiration. As always, I love you, my friend!!!!

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