Forging Ahead to the Future

Debbie before her LFI (Learning for Independence) Prom

It’s been three years since I last blogged. I decided that Debbie’s bat mitzvah was the cherry on top of the sundae. She had come so far and I realized that my time of blogging had come to an amazing end. I also wanted to respect her privacy as she had become a teenager. Lord knows if my mom had blogged about my teenage years I would have been horrified. So here we are three amazingly fast short years later.

Three years later and Deb has made progress that has exceeded my wildest dreams. Before reading on, please know that I love my daughter to the moon and back, and there is nothing, NOTHING I wouldn’t do or haven’t done for her!

With that being said, this blog is about me and my feelings about what the next two years of high school will be like. There is a part of me that is going back into period of mourning. I think back to all of my experiences in high school, both good and bad, and then think about Deb’s. On one hand, how fantastic that she is socially unaware right now? She hasn’t experienced crushes and unrequited love, girl on girl drama, peer pressure, and stress about grades or getting into the perfect college. On the other hand though, I’m feeling the pain of missing out on the good experiences of high school with Deb.

Deb and me on April 2, 2019 AKA World Autism Awareness Day

Deb is starting her junior year of high school this September. When Joe started his junior we began thinking of college and then in the spring of that year we did a whirlwind tour of three different schools three weekends in a row. That’s not going to happen this year for Deb. What will happen? We’ll have another IEP meeting in January and we’ll start discussing what life will look like as she transitions into post-secondary education. She’ll have the option of staying at her school until she’s 21, something that is pretty much off the table, or doing post-secondary work placement through our county school system. And all that’s okay, except for me right now it’s simply not.

Deb on the merry-go-round at Hersheypark

I wish for so many things for Debbie. I wish she had typical friendships. I wish she could hang-out with friends, break curfew, and fight with me about the unfairness of being grounded for a week. I wish she could learn how to drive and argue with Joey over who’s going to drive “their” car versus who’s going to drive my car or Vince’s car. I wish we were talking about SAT prep courses, grades, and potential colleges. I wish! I wish! I wish! And as REM famously sang in Stand, “If wishes were trees, trees would be falling.”

So I’ll do what I always do. I’ll pick myself up off the ground, dust off, and carry on. Because what else is there? Debbie’s life is different from others. It’s not less, just different and it will be okay. Thanks for allowing me this pity party. End of rant….for now.

Deb and me at Hersheypark

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