It’s Friday. Time for the guest post of the week. We welcome Julie to our page. She has truly been an inspiration for us. Julie, from the Facebook page Ketchup with a Side of Autism ( https://www.facebook.com/KetchupWithASideOfAutism ), does a great job of telling you who she is and her words are full of love for her daughter, Debbie, candor and brutal honesty as to how the life they have is, and raw emotions to things that are hard to put into words. Make sure to go and let her know how much you love her words. And her honesty.
Hello, Em’s Journey!! I’m Julie from Ketchup With a Side of Autism and I have the pleasure of being the guest poster here tonight! First and foremost, I want to thank
Jenn for giving me this opportunity. I am flattered that she asked me to do this.
I have been mulling over and over in my head about what I should discuss. I even put it out on my page and the consensus seemed to be that I should simply write from my heart and about our journey. So that is what I am going to do.
Like I said earlier my name is Julie. I have been married to my husband Vince for 16 ½ years and we have two amazing kids. Joey is 13 and he does not have autism. Debbie will be 11 at the end of March and she has autism. While I always felt that Debbie was different somehow and she received services from Infants and Toddlers starting at age 2, she was not formally diagnosed with autism until she was 5. That was the beginning of our formal journey with autism. And yes, I cried. And yes, I yelled. And yes, I mourned the loss of what was supposed to have been. But I picked myself up, dusted the emotional crap off of my lap and got to work. At the end of th
e day Debbie was still Debbie and I still loved her to the moon and back. Just because she was labeled with the “A Word” didn’t mean that her personality had changed. She was still my baby and damn it, my baby needed me to be her mom regardless of autism.
As a teacher I knew enough about autism to know that it was a spectrum disorder and it was not the end of the world. We had Debbie enrolled in a preschool program for kids with special needs. Unfortunately, her teacher found Debbie to be the frustrating kid in the class. Debbie wasn’t talking. Debbie wasn’t potty trained. Debbie was having accidents and she needed to be in pull-ups. (Turns out that was a lie. We called the state board of education just to make sure!) Bottom line, it was all about what Debbie wasn’t doing and let me tell you what! That teacher and I went round and round because as a Kindergarten teacher I could throw her teacher jargon back at her. You always start with positives, then move onto negatives, and then state what you as the teacher are going to do to support the child. And since none of that was happening, it made for a shitty situation. And of course the one who really suffered for it was Debbie. This was the beginning of me realizing that it’s not about what I want or what makes me happy. It’s about what is in Debbie’s best interests.
We moved on from that preschool program to a Kindergarten program designed specifically for children with special needs. What a difference a teacher makes! One of the best teachers EVER!! She loved Debbie. She saw all the good in her and Debbie thrived that year. My issue with the class? It was for kids with various special needs. The only time there was interaction with same-aged peers was at lunch, recess, related arts (music, art, PE), and center time at the end of the day. You need to understand that I teach in a county that is more forward thinking in regards to special kiddos than the county in which I reside. I have seen inclusion at its best at my very own school and I wanted the same thing for my daughter. So my husband and I sat down with the principal of our neighborhood elementary school a full year before Debbie was due to go to first grade. BEST PRINCIPAL EVER!!!!! No one will ever be able to hold a candle to this woman. I swear! She was open, honest, and direct – a woman after our own hearts. Debbie came into her office, didn’t greet her, and messed with all of her stuff. And yet, this woman said that it was absolutely possible to create an inclusion program at her school for Debbie. My daughter had barely any language at the time, save for a few key phrases, and the principal told us she was more than welcome at her school. I was over the moon because even though it meant that Debbie had to repeat Kindergarten, she was going to be included in a general ed setting with general ed peers and I knew she was going to fly.
And fly she did…until…second grade. The proverbial shit hit the fan. The aggressive behaviors started. Sleep issues started. Being emotionally and physically unavailable for learning started. It was so bad! I was being called at work to come and get her. They had a codeword (Bubblegum) for when she melted down and she was eloping. Oh, and worst of all, our amazing principal went to another school. It was awful! I added fiber to her diet and that helped some of the constipation issues she was having. We took her to a developmental pediatrician who put her on Tenex and that helped the sleep issues. The year ended better than it started but not great. We realized that Debbie was hitting her academic ceiling. The work was becoming too hard and she couldn’t keep up with it anymore. They started pulling her out of the classroom more and more. And when we had our annual IEP meeting we decided it was time for more pull-out hours for third grade. It was time for her to go to the “special” classroom. My heart was broken. I knew that once we made the decision to pull her out of the classroom more than she was in the classroom, it was going to be awfully hard to get her back in there. Oh look! There’s that nagging notion again. It’s not about what’s best for me. It’s about what’s best for Debbie!
Third grade went better. She was in the small group setting. She was getting better sleep. We even tried to a lame extent the GF diet. There were a few meltdowns but mostly it was the self-control of keeping self-to-self. Overall, it was a much better year because of those factors and the fact that Debbie was now being instructed at her developmental level. Did I want her included in the gen ed classroom more? Of course. Did I want her to be successful? More than anything! We had our annual IEP meeting and it was determined that Debbie’s hours remain the same because she was meeting success.
Now we have reached 4th grade. School went great the first two weeks and then the meltdowns started. The sleeping issues started again no matter how much melatonin we were giving. Over the summer I put an air mattress in the hall because Debbie was in the habit of waking up and either crashing on Joey’s floor or the hallway floor. I was trying to break her of at least the habit of going into Joey’s room. That didn’t work out the way I planned. Nobody except for Joey was sleeping. Every time we put the child back in her bed she would migrate back to the floor. ¾ of us were tired and grumpy and nobody has time for that nonsense. So I put the air mattress on the floor because then at least she would have a place to sleep and stay asleep. And that worked until the beginning of this school year.
Mind you she would still go to the mattress but she wouldn’t go back to sleep. Then in the fall she was having severe constipation issues and it has been ongoing to a degree since then. She’s also had several ear infections and her sleep is erratic again. I tried getting in touch with our developmental pediatrician last fall but that didn’t work out. I finally resigned myself to the fact that a psychiatrist at Kennedy Krieger Institute would be a really good match for Debbie. To me this move was a huge stigma but again it’s not about me. It’s about Debbie. We finally met with her in January and she put Debbie on trazadone to help her with the sleep issues. Trazadone was a dream come true for about a month. Then Debbie was on a really strong antibiotic and it was messing with her schedule. She fell asleep at school several times. At least they were willing to let her sleep. But that interfered with learning and she was missing out on some of the little inclusion time that she had. And to add icing to the cake, this year Deb was also up for re-evaluation. I hate, no detest, no loath re-evaluation. As much as I love Debbie’s team of teachers, there is nothing worst than hearing about what your kid can’t do.
This year’s re-evaluation was tough to say the least. Bad enough to hear that our daughter is two years behind her peers. Bad enough to hear that at the age of almost 11 she still doesn’t know how to interact with others. But even worst is hearing that there has been regression. That the things she can do at home are not carrying over to school. And now we have reached another crossroads in our journey. We moved onto the annual IEP review meeting and the idea of being certificate bound was touched upon. And to top that one off, there is the matter of middle school, which is a year and a half away. And Debbie had a crappy day yesterday. As I wrote on my page yesterday she was in full-on autism mode. She was seeking sensory input from the moment she walked in, was non-compliant, and destroyed a resource room all within 45 minutes. I was emailed. I called. I talked to her. It helped a little. She was edgy and she had fallen asleep sitting at the computer. It was a hard day and so I called her SPED teacher and I vented and she listened. I brought up middle school and she reminded me about the new middle school program for kids who are high-functioning on the spectrum. It is so new that right now there is only one child in the program but she suspects that many more will be added next year. And Debbie’s name is floating around as a great candidate for the program for the following school year. Another cold splash of reality. Take her out of our home school??!! WHAT??!! Does this mean that she’s now definitely certificate bound? WHAT??!! Slow down. Take a gargantuan breath. BREATHE!!! What is the adage again? Oh yeah. It’s not about what you want and what makes you happy. It is about giving Debbie what she needs to be successful.
If we want her to be an independent adult, then we need to start supporting her now. She can always get a GED down the road. She can go to college down the road. Having a certificate does not mean she will be flipping burgers as a career and if she does and it allows her to be independent then so be it. She needs to learn how to pay bills. She needs to learn how to maintain a bank account. She needs to know how to be leery of people who could potentially take advantage of her. She needs to know and have life skills. And that my friends, is where we are in our journey. Whatever decisions we make for Debbie will be because we have her best interests at heart. Being a parent isn’t easy. Being a parent of a kiddo who has special needs is beyond difficult. But we do the best we can and when life throws lemons we make lemonade. xoxox ~ Julie
Thank you Julie!