Tell Me What it is

Alternative titles for this post: Pillow Talk, What is Autism?
Pillow Talk is somewhat appropriate but that is really meant for two people who are intimate in the sexual sense not intimate in the talking with your child so I had to throw that one out. What is autism, eh, didn’t love it.
At night I typically “put the boys to bed”. Sometimes this means I kiss them goodnight and sort of tuck them in and other times I spend time with them together or separately. There can be reading involved or talking or just cuddling. When I have something important or significant that I want to communicate to Bryan I often get under the covers with him and we both have our heads on the pillows facing each other. I can then say to him, Bryan, “I have something I want to tell you and I want you to listen to me.” If he can be serious then I will talk. If he starts with the crazy giggles I wait for another night. The night after his Bar Mitzvah I was able to tell him how proud I was of him and how well he had done. I told him, “Bryan you were wonderful at your Bar Mitzvah, you were so happy and Daddy and I were so proud of you”. Other times I have had to tell him some tough things. After he was lost at camp and he was home with us I was very shaken up and he knew it. I wanted to make sure he knew he did nothing wrong. It may seem obvious to a typical child, but I know Bryan gets worried. I told him many times that he did nothing wrong but I was frightened and betrayed by the camp but I wanted him to know that that I loved him so much that even though I knew he was okay I was so sad because I was worried about what could have happened. These were difficult concepts to get across to him but by talking to him at this time of night, calmly, when he was vulnerable and open, he could take his time and take it in.
Jason and I have always had our little talks at bedtime. Jason at times will say “Mom, can I talk to you?” and that’s how I know something meaningful is coming. Often times it can be something comical or something “priceless”. We have always been very open with both boys about Bryan’s autism. That is how both Earl and I are. What you see is what you get. It would never occur to either of us not to talk about it, not to share it with our kids and others. We have also felt for Jason he must be educated and given the tools, the language, to learn how to deal with his brother’s disability so that when people ask him or when kids tease Bryan or ask about Bryan, he will have the appropriate response. When Jason was about 3 or 4 we started reading books to him about siblings with autism. He had friends asking him, even at that age, “why does your brother pinch you? why does he keep repeating stuff? why does he talk like that?” So we tried our best to explain it to him and read books at a 4 year old level.
As time went on Jason has asked many more questions but we are very proud of how much he loves Bryan and how much he is able to explain that his brother “just thinks a little bit differently”. They are best friends and do a lot of natural sibling things like fight over toys/games, play together, annoy each other. Jason is lucky that Bryan has autism because Bryan is so big if he was a typical kid he would probably beat the crap out of him. A little pinching every now and then is not too bad. Jason can be sort of funny about it too. At the first visit to our current pediatric dentist the nurse called for the boys and Jason stopped the nurse. He said “I need to tell you, my brother is a little crazy.” Ok. She looked at me and we both chuckled. Of course they knew Bryan had autism but at that point when Jason was very young he didn’t know too well how to express it. Now of course he is a doctor so he could tell you more than you would need to know!
On Sunday night Jason asked me what I call the “ultimate question”. This is the question every parent of a kid with a disability asks themselves and then feels like the worst piece of shit on the planet ten seconds later. He said “Mom, what do you think Bryan would be like if he didn’t have autism?”. It is as if someone pressed a button on me and instant waterworks. Jason felt horrible that he made me cry. I explained that he shouldn’t feel bad that he made me cry but that question is so hard because it’s like saying what would Bryan be like if Bryan wasn’t Bryan? Of course we have all thought it. Watching my perfectly handsome boy sleeping have I not thought a hundred times, what if he woke up one day and was just typical? Who would he be? But the guilt associated with those feelings is monumental. I told Jason we won’t know and just have to accept Bryan for who he is. Ironically I was half expecting the question because Jason had spent the weekend in NY with a bunch of our friends with typical kids. Sometimes being with a whole group of typical families can do that. But Jason is no longer a 4 year old and his questions are deeper, more mature. He said, “Mom, tell me what autism is?” So I said, “I think it’s like this” and tried to explain and he interrupted me-“No Mom, not what you think it’s like, tell me what it is”. I took a deep breath and told him let me explain. Autism is a brain disorder. Somewhere in Bryan’s brain something is not working right. Most of the things in his brain are working right but one thing or a few things aren’t. So we are going to have to just be happy that most parts work right. He seemed to accept this but I could tell from his expression he wasn’t sure how hard to push. Like is my mommy stable enough to ask more questions? But Jason being Jason who is incredibly sweet and kind did not push any more. He said “Mommy, will you snuggle me?” So we did.

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.

On the day that you were born the angels got together…

carpentersWhen Bryan was a baby I used to sing 2 songs to him, Close to You and Raindrops Keep Falling on My Head. Why these 2 songs? Close to You because it was appropriate at the time and it was sweet and gentle and Raindrops because I knew the words and when you are feeding a baby at 5 am, you need words! If the music in your iPod or iPhone says a lot about who you are I am clearly headed for a diagnosis of schizophrenia. Can the Beatles, the Dead, and the Carpenters coexist with Lady Gaga and Pink? beastieDoes the music you listen to define who you are? For the most part I hope so since most of the music I listen to is the Dead, old school like the Who or Neil Young. I need the warmth of Harvest Moon after a long day but in the morning I crank up the Beastie Boys Ch-Check it Out and drown out the voices in my head. Jason was just asking me last night to sing a song to him before going to bed. Now that is one brave kid. I have some skills, but singing is not one of them. I sang Close to You. That kid totally digs me, he let me sing the whole thing without telling me how bad my voice was. Bryan was just giggling. A few nights each week the boys like to sleep together and last night was one of those nights. I jumped in with them for a bit, all of us in PJs snuggling. I love when they each say, “Mommy, snuggle me!” So I go back and forth, snuggling and kissing and mushing in between them and just enjoying all of the closeness. I read a silly book to them, before the singing, about Spongebob and Zombies-way too young for either of them, but it was a request and sometimes I want to just be the fun mom, not the buzzkill teaching mom so I read it. We laughed a little because it was really silly. Jason always wants me to stay longer and Bryan always wants me to go. When Bryan is ready to go to sleep he is done and dismisses you, but Jason can always go for a few extra minutes of Mommy time. All good as far as I’m concerned. I closed the door and went to my room to sit on the bed for a few minutes to just drink in the last few minutes and reflect on what a little gem those ten minutes were.
I’ve been sort of preoccupied lately with work and planning for the summer and sometimes I need to work on living in the moment more. I think this is an issue for a lot of busy people but for dealing with Bryan one of the biggest struggles is doing for him vs. doing with him. I wonder when he thinks back on his childhood will he think of me as a good mom. He will have lots of people telling him your mom loved/loves you and did so much for you and was a good advocate. But if you are the kid, will you really care about your parent’s advocacy skills? Not so much I’m guessing. So that is why I must always work on slowing it down to be with him. This weekend Earl is taking Jason to NY for another friend’s party. Bryan and I have lots of plans. Surfers for Autism on Saturday. This is the 6th year we are doing this so you can very well imagine the difference between a little 7 year old boy and hulky 13 year old. On Sunday morning we will go to the Psoriasis Walk. I have Psoriasis and so do many of my family members and all of my cousins will be there. And while the point of it is to raise money and awareness, it will be a total love fest for us and when I am with my cousins and extended family, we always say we put the “fun” in dysfunctional. So from Friday night at 6pm until Sunday evening when Earl and the little J monster get home, it’s all Bryan time. I am going to focus on him, play Wii, go with him to ride his bike, bicyclewatch his movies and do what he wants. I will buy him bubble gum and let him take baths in my bathtub.
I am speaking tomorrow at Bryan’s school; not too sure of the audience but I believe they will be folks in the community who are interested in learning what it is like to raise a child with autism. Buckle up people, it’s a bumpy ride! Earl and I are living proof that raising a special needs child can be tough but joyful and when Temple Grandin says “different but not less” that is really the truth.