A Journey of One Thousand Miles Begins With a Single Step

Lao Tzu once said, “A journey of one thousand miles begins with a single step.” And what a journey it has been. When Debbie was four years old I pulled her out of her Hebr…

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A Journey of One Thousand Miles Begins With a Single Step

 

Deb and Mr. Joe

 

Lao Tzu once said, “A journey of one thousand miles begins with a single step.” And what a journey it has been. When Debbie was four years old I pulled her out of her Hebrew preschool program. The children in the group put my Kindergarten class to shame. They were practically perfect in every way – a class full of little Mary Poppins clones. Debbie stuck out like a sore thumb. She wouldn’t sit quietly. She wasn’t interested in making the craft and she couldn’t have cared less about the snack. All she wanted to do was play with the toys. It wasn’t long before I realized that even with my support this was not the program for her.

Fast forward about two years. We started at a Hebrew school that was based at our local library. Debbie went twice a month while Joey went weekly. I stayed with Debbie and this time around she was interested in listening to the story. She made the crafts with my assistance and she at least tried the snack each time. Her teacher marveled at how far she had come and couldn’t wait for her to return to the program the following year. And then the shit hit the fan. In November of 2010, Deb began to have repeated bouts of strep. By March of 2011, she had her tonsils removed. Because she was in a biweekly program, she missed a lot of Hebrew school in those five or so months. By the time we were finally able to get back into the routine, the year was practically over. Debbie had a hard time readjusting, and unfortunately, this led to us parting ways with the program.

I decided to “Hebrew home school” Joey and Debbie. That basically meant we went to synagogue for Rosh Hashanah and Yom Kippor. We celebrated Chanukah by lighting the menorah and when spring came we participated in Passover Seders and only ate Kosher for Passover foods for the week. It worked for us for about two years and I pushed aside the guilt I was feeling for not making Hebrew school a priority. I could hear my mom, may she rest in peace, lecturing me about the importance of maintaining Jewish traditions and our heritage and…I ignored her “nagging tone.” I knew I was letting my emotions and feelings get the best of me. At that point, however, my pride was more important than the kids going to Hebrew school. Besides, I knew that at least Joey was going to have a bar mitzvah. I just needed to figure out how I was going to make that happen.

During the summer of 2012, Joey started bar mitzvah lessons with Mr. Joe, a Jewish officiant, who tutored  kids and presided over their bar and bat mitzvah services. Many kids were like mine – Jewish but unaffiliated with a synagogue. Mr. Joe also helped children who have special needs become a bar or bat mitzvah. This was important to me because, although I wasn’t totally thinking Debbie could have a bat mitzvah, I wanted to have the option just in case. Mr. Joe told me to call him when I thought Debbie might be ready and I put that idea into the back of my mind.

When Joey started taking lessons, we brought Debbie with us. At first she would sit for a REALLY short time before leaving the room. As the weeks went on, however, she sat in on the lesson longer and longer until one day she sat and listened the entire time. By the time Joey’s big day had rolled around, she was able to sit and participate throughout the whole service. People were amazed! I knew she could do it though because  I had witnessed her growth during that year. I thought that maybe she could become a bat mitzvah but then for some reason I let the idea go.

Deb Sign-In Board Then last year I seized the opportunity to have Debbie become a bat mitzvah. It was literally a snap decision. I decided to ask her if she wanted to do it and she said that she did. I called Mr. Joe and he said that without a doubt Debbie could do it and he would help her succeed. And succeed she did!

We started lessons in May of 2015 and we practiced weekly both at home and at Mr. Joe’s house. Debbie persevered. She learned a variety of songs and prayers and her Torah and Haftorah portions. She also read a speech written by Joey and myself. She read from the Torah, just like any other kid who has ever been bar or bat mitzvahed. She led the service, just like any other kid who has ever been bar or bat mitzvahed. She celebrated with a DJ, dancing, and dinner, just like any other kid who has ever been bar or bat mitzvahed. During the Hora, she went up in the chair, just like any other kid who has ever been bar or bat mitzvahed. We made accommodations along the way and those accommodations helped her succeed!

During her service, Mr. Joe stated that he had witnessed a miracle. The miracle was Debbie transforming from a girl who has autism with severe speech and social impairments to a girl who has autism with severe speech and social impairments who led and participated in her own bat mitzvah service. I can’t thank Mr. Joe enough. He believed in Debbie and he encouraged  and supported her during the entire process. It was joyous. It was awesome. It was perfect. I am beyond proud of Debbie because her bat mitzvah was a culmination of a long journey. From being disinterested to celebrated, Debbie walked one thousand miles and it began with a single step.  family D Bat Mitzvah

 

 

 

Right Now All I See Is “Can’t”

V, J, D

Yesterday the dreaded thick ugly brown envelope came home. You know the one I’m talking about. The one that has the reevaluation results. I knew it was coming because our IEP meeting is January 5th. I just didn’t think  about the fact that it would come home three days before Christmas. And while I certainly was not expecting any new realizations or sweeping gains across the boards, I definitely wasn’t prepared emotionally for what was right there in black and white.

I waived my rights to attend the meeting that would give Debbie’s team permission to test her. It was a routine meeting and they were testing for all the things they’ve always tested for. It had now become mundane and taking the time off from work was unnecessary. So the  SLP, SPED teacher, Gen. Ed teacher, OT, school psychologist and other various players convened and signed off on reevaluating Debbie for autism.

Those therapists who needed more information sent home parent questionnaires for us to fill out. As I was answering question after question, I realized this time was different from when we first received Debbie’s initial autism diagnosis. At that time I had scored her as “practically perfect in every way” because I was in my denial phase. This time I was honest with myself and her therapists. And you know what? Debbie came out really freaking low. There was no denying the obvious and what I have known all along…Debbie was not just going to be labeled with autism. Another gut-wrenching label was going to be added to her diagnosis and the pile of what she can’t do was going to grow exponentially. I commented to Vince what I knew to be true, and I told him that even though I was right, if I had to see the label actually written on paper, I was going to be devastated.

And then it came true. The blow landed right in the middle of my gut and knocked the wind out of my sails. There it was in right in front of me on paper in black and white.

“Debbie continues to display autistic symptoms including poor eye contact, repetitive speech, restricted interests, behavioral rigidity, lack of social reciprocity, severely impacted communication, and difficulties with self-regulation. Her current special education disabling condition appears to be appropriate though she would also meet the criteria for a special education of intellectual disability. It is recommended that the IEP team consider this information, along with any additional testing data to determine special education eligibility and for educational planning.”

D and MIntellectual Disability: a politically correct way to say “mentally retarded.” It was made official on paper. And again, I knew it was coming. I was not and I am not in denial. But to see it, to process it, and to understand it was the knock-out blow and right now all I can see is the word “can’t.” The ceiling has just been lowered by several feet and limitations and roadblocks are in our way. They won’t be there forever and I’m not down forever. Eventually I will get back up on my feet and continue the fight. For the time being though, I am hurting and I am licking my wounds. And I think I’m entitled to do so.

 

 

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