Why Can’t They Just Be Nice?

10488134_10207550989638646_6265807800769638238_n-1 I see you whispering, your sidelong glances, and giggling. I know you don’t want her touching your things because you might catch her “weirdness.” I see you walking away when she comes near. And I understand your point of view. When I was your age I was the same way. I whispered. I glanced. I giggled. Even though I knew better. I did it anyway. Because like you, I just wanted to fit in.

Now though, I’m older and I’m wiser and I have a daughter with autism. And watching her being ostracized hurts. Even though she is oblivious to the stares, whispering, and giggling it still hurts my heart. Tremendously.

I want her to have a friend who will talk to her. I want her to have a friend who will dance with her. I want her to have a friend who will embrace her quirks; and I want that friend to love her, not despite the quirks, but because of them. Embrace the jumping and flapping and scripting. Watch her play the piano and revel in the fact that she can play chords with her left hand while simultaneously playing The Star Spangled Banner with her right one. And be amazed that she taught herself how to do this because she is able to play by ear.

I won’t force anyone to be her friend though. I certainly don’t want someone to feel obligated to hang out with her. I’ve never been in the business of being fake and I won’t compromise my principles so she will have a friend. I wish other kids though, would see that beauty that is my Debbie. I wish kids this age weren’t so consumed with fitting in, and instead, were more accepting of differences. I wish kids this age could embrace everyone’s quirks and oddities. I wish they would be nice. Why can’t they just be nice?

Happiness is a Hug Around the Neck

When Joey was a baby my mom would sing “I Love You a Bushel and a Peck” to him every chance she got. Unfortunately, he doesn’t remember this gift of love. But I do…as if it were yesterday.

Yesterday was a little bit of a difficult day around here. On a scale of one to ten, I would put it at about a 6. It was okay – not too bad but not too good. Debbie was perseverating more than her usual amount of perseverating and she was getting upset when her thoughts were ignored. She’s at the difficult age of almost twelve and a half. On top of autism, her typical preteen anxiety sometimes kicks into overdrive. Dealing with that anxiety can be frustrating to say the least.

We took my 94 year old grandmother out to lunch as we do most every Sunday. Debbie just had her bat mitzvah lesson and Mom-Mom was asking her about it. Her reaction was to scream and growl, “NOO!” I snapped at her saying rather sharply, “You don’t talk like that to Mom-Mom!” In typical grandma fashion, Mom-Mom tried to blow it off but I wasn’t having any of that. Whether it’s autism or hormones talking, being disrespectful is out of the question.

As we were driving home Deb’s mood continued to deteriorate. She was obsessing over not having to go to school this week, not having to pick out her clothes, and what we were going to have for dinner every night. I was trying to ignore her. But she was persistent and wasn’t going to give in without getting any kind of attention, even if it was just a look. What was the cause of this sudden mood swing? She woke up yesterday morning perfectly happy. I felt like I was dealing with a preteen Dr. Jekyll and Mr. Hyde!

After mulling it over, I realized that hormones were more than likely the cause for the change in her temper and we definitely needed some space between us. Fortunately, I had a family party that evening which gave me the excuse to go out and clear my head. We needed the distance between us before a battle ensued. Because as much as I try to keep a level head with Deb, it is not always the easiest thing to do. So out I went. I relaxed with family, ate Chinese, and had a generally good time.

By the time I got home, Debbie was in bed. She was just on the verge of falling asleep when I went in to kiss her goodnight. As she said, “I love you, Mommy,” she gave me the tightest hug around the neck. And she held me close for about a minute before letting go. I thought of the song “I Love You a Bushel and a Peck,” Mom had sung so long ago to Joey. The hug around the neck she gave me took me back to that moment of joy – that moment of unwavering love.

To get through the tough times, we need to focus on the happy times. I love my family fiercely – as much as a bushel and a peck and a hug around the neck. And that’s what gets me through the stormy days. xoxoxo ~ Julie

Sometimes I Just Wish She Was Normal

Joey and Debbie The lifeguard blew his whistle and Debbie let out an ear piercing, high pitched scream that could put a dog whistle to shame. And the screech landed not only in Joey’s ears, but the neighboring toddlers and their fathers as well. Deb knew the whistle was coming. Plus, I took the time to ask the lifeguard to blow softer so that she wouldn’t get upset. It didn’t matter. I forgot to give her the one minute warning and off she went. After about two minutes, I managed to calm her down and get her out of the pool. Threats of taking away Pizza Hut holds a lot of water with Debbie.

When it came time to go back in the pool the lifeguard kindly came over to us and told us we could go back in. He said that he didn’t want to blow the whistle because he didn’t want to upset her. I thanked him for his acceptance and understanding and told his mom that she had raised her son right. We were the only ones at the pool and Debbie was thrilled to have the place to herself. Joey, in the meantime, chose to remain on the sidelines lounging in a chair.

We stayed for another half-hour and then walked home. I noticed that Joe was in a rush to leave and even though he kept denying that something was wrong, I knew there was.

As we were walking home I kept at him to tell me what was bothering him. He finally admitted to me that he was embarrassed.

“Mom,” he said, “sometimes I just wish she was normal!” I explained to him that I understood his embarrassment and that there were times that I wished the same thing. But then I gave him some advice.

“Joe,” I said, “there are always two choices. You can choose to either wallow in self-pity about how difficult your life with a sister who has autism is or you can take a deep breath, suck it up, and move on with your life. I can’t change the fact that she has autism. I can do things for her like ask the lifeguard to blow his whistle softly to help make life easier for her. But I can’t change the fact that she has autism. All I can do is chalk it up to she had a difficult time at the pool today and then move on with life. I refuse to wallow. I choose to accept her as she is and the same choice is yours. You can wallow or accept. What do you choose to do?”

We walked the rest of the way home in silence and I let him ponder what I had said. When he was ready to talk he told me that he chooses to accept her for who she is. We processed through it a bit more and I pointed out to him the positives of our situation at the pool today.

“You know, Joe, it could have been so much worse. There was a time when we would have had to leave right away because she would have had an uncontrollable meltdown. She calmed down really quick, dried her tears, and got back in the pool. She didn’t let the whistle ruin the rest of her day and she is quite willing to go back to the pool tomorrow.”

“That’s true, Mom. Sigh…it’s all good.”

Yes Son, it is. It’s all good.  There was a time when a situation like this would have bothered me and consumed me for the rest of the day. Now it barely phases me. The more I look at Debbie and see how far she has come in this journey, the more I realize just how far I have come as well. On the other hand however, I totally get how Joey felt today and he has every right to those feelings.  But as I told him before the screaming started, he is amazing with Debbie. He is patient and he understands her. And on most days he jams with life with her. Even though today was hard for him tomorrow will be easier because it is all good! xoxoxo ~ Julie

The Greatest Birthday Present Ever!

Deb bday My birthday has always been a holiday for me. When I was a kid, I would start hounding my mom in July about my birthday that wasn’t until January. I couldn’t wait for the day that was all about me! I loved the parties, the cake, the ice cream, the singing, and of course opening all those presents! Some things will never change, that is until they must.

The stress over birthdays began when Debbie was a toddler. I remember going to family parties and singing to every single person who had a birthday during the current month. Debbie would burrow into our arms. Sometimes she would cry. Other times she would just simply curl up into a tight ball. I would make my typical excuses. “She’s tired,” or “I think she must be getting sick.” Anything to deflect attention away from Autism. As she grew, the burrowing and crying gave way to blood curdling screaming, hitting, throwing, kicking, and, on the rare occasion, eloping. In fact, just this past summer we went to Red Robin for lunch because Debbie had asked to go there. She knew there would be singing and clapping and sure enough there was. Yet, she still managed to chuck a mostly empty glass across the table.

We realized early on that her birthday parties needed to be modified. We sing to Debbie but there is no clapping unless she initiates it. That works for Debbie and what works for her works for us. When the unexpected birthday celebration happens, however, it’s a whole new ballgame. At least it was until recently.

Last night we went to Red Lobster for dinner for my birthday. We had a long wait for everything from beginning to end. We had neglected to bring Debbie’s Abilify with us. If I was a betting woman, I would have bet against us coming out on the successful side of this trip. All signs were pointing to at least a tantrum. I’m glad I’m not a betting woman. I would’ve lost the bet!

There were three separate birthdays complete with singing and clapping on top of everything else. I could feel myself tense up each time. I held my breath and  waited to be smacked. And yet, those smacks never came. There was no yelling either. Instead, Deb held her ears while she leaned into my chest. And then each time it was over, she looked at me and said, “Clapping is all done. Happy Birthday is all done.” She was more concerned about getting her chicken fingers than she was about the birthdays!!!

So it’s okay that my birthday didn’t come with all the fanfare and hoopla from my childhood. It’s okay that we didn’t sing or eat cake or open presents. My present this year didn’t come in a box. My present came from Debbie. She was calm and patient through other peoples’ celebrations and that, my friends, is the best birthday present ever!