Tuesday, November 9, 2010

The Beginning:

This is Elizabeth in 2004 and today she will be the subject of my posting and several others after this. I am writing about her so those of you with children who have autism/autism spectrum disorder and are only beginning your journey on this path will be encouraged and have hope.

I do want to write this though - please understand my daughter has a Pervasive Developmental Disorder - which is an Autism Spectrum Disorder. I am not an expert, I am just a mom who is doing what she can to help others and help her daughter. Yes, I am 19 hrs short of finishing a Psychology Degree, but that DOES NOT MAKE ME AN EXPERT! So please know I hope to encourage you, but my experiences will be different from yours because everyone is different and so is every child.

When Elizabeth was born, I had never been a parent. Our older daughter Sarah came to visit from her mom's, but only for short periods and so I had very little to base my opinions on. Even as a seasoned babysitter, it isn't quite the same, especially since most of the kids I babysat as a teen tended to grow up and find out they had special needs. Some severe, some as mild as ADD/ADHD.

However, as she got older, I had subtle hints, and yet all I saw was a beautiful little girl. As she got older though, her speech didn't come as it should, I was often her translator. Sometimes not even I could understand what she was talking about. She had favorite phrases she would say, certain things that she could say that helped me know what she needed. But from a young age, Elizabeth and I were intricately linked. Often I knew what she needed before she needed it as an infant. Sometimes we would even sigh in unison. But the glaringly obvious signs that smacked me in the face where several different things. First, I realized she wasn't playing with the other children in the church nursery. She would take a toy and go sit in the corner and play with it alone. Second, she would bang her head against the floor, wall, stairway, whatever happened to be around when frustrated. Without the speech to tell me what she wanted this means she was frustrated a lot. She banged her head a lot to comfort herself and I did finally break her of banging her head but then she decided to comfort herself by masturbating (I think I preferred the head banging instead at that point - at least no one looked at me like my child was sick and perverse - I can handle them wondering if I abused her - because five minutes with us and social workers could tell that was not the case). Finally, She bombed every test at Screen for Success - which is done through Rainbows, a program here in Kansas for children with developmental delays. By the way, the reason I didn't think of her speech as a problem - I have a friend whose children didn't talk a a lot either, but then at some point, they'd start jabbering away. I thought that is what would happen with Lizzie. After Screen for Success things began to role forward.

Shortly after Christmas, I started meeting with a very nice counselor at Irving Elementary School not a far distance from our house. She wanted to get very in depth, but honestly, Chris was deployed and it had happened suddenly, so neither Elizabeth nor myself were doing very well emotionally. And it was too close to when Chris came home, and I wanted Chris to be home so we could face it together. So we did some testing, and waited for Chris to come home. I should also explain that prior to Chris' deployment he had been her primary caregiver for a while. I had gone back to work when she was 15 months old and Chris was working 7th shift which meant he worked Friday, Saturday, and Sunday for twelve hours. He spent Monday through Thursday at home with Lizzie playing with her and taking care of her. Suddenly Daddy got called to report for deployment and her whole world crumbled. For one year, my daughter did not grow, she did not gain weight and she did not hit many of her developmental milestones either. I have medical records to prove it. It was as if something inside her decided that she had to wait for Daddy to come home. The most I got out of her was that I was able to have her almost completely potty trained by the time Chris got home. I even had to leave my job. She was doing so poorly that once my mom couldn't watch her anymore, I couldn't keep childcare. She was so busy and active that even a seasoned mom and babysitter couldn't handle her anymore. So I left my job, without any notice, I didn't have much choice at the time. I could keep my job or I could let her continue to fall apart.

The interesting thing is, once I started stay at home with her, she began to settle down. It also gave me time to sit with her and make some observations. I am a fairly analytical person - something that serves me well at some times and bites me in the butt at others. But in this case, it helped me out. I realized something, sugar and food dyes caused Elizabeth to become aggressive. I also began to realize that something was wrong, at the time though I had to push it from my mind. With Chris being gone there were things that needed attention more, like our house that was built in 1911 and was falling down around our ears. You know things like that.

So I knew that when Chris came home, this was something to look into. Flash forward to Fall 2005 found us with some huge changes going on. First, Sarah was able to move in and live with us. It was awesome and in the process she played with Lizzie a lot so Lizzie began to talk a little more. Second, we began the process of testing completely with Irving. I explained to our pediatrician Dr. Spade that Elizabeth was being tested for special needs, because she had failed Screen for Success and she got us an appointment with Dr. Valerie Kerschen at Heartspring. Actress Susan Dey helped start Heartspring for special needs children. They house them and offer therapy for children with special needs. The one who live there are usually very severe. However, she is in high demand, so while we asked for an appointment in September 2005, we didn't get in until March and had our follow up in May 2006.

In the meantime the testing came back and we had our first Individual Education Plan (IEP) at Irving to get Elizabeth into a program to help children who are developmentally delayed. I remember a few weeks before we went to the meeting I had dropped off some papers to the school psychologist who was going to be at the IEP and as I drove home, I couldn't help but cry. As I walked into our home, Chris was stunned to see me crying.

"Honey, what's wrong?"

"There is something really wrong with Elizabeth."

"Okay we'll get her help."

"No you don't realize what this means. . . this means that most people won't see her the way we see her. For the rest of her life, people will judge her and it is going to change how the world sees her. We see her and all the things she can become, but that isn't how people will see her."

A few weeks later as we sat in that IEP, I did battle for my daughter. Please let me encourage you to speak up. And please if you don't have an education - begin educating yourself before going to your first IEP. It is easy otherwise to have people make decisions for your child. Forewarned is forearmed. And please utilize the resources you have - it isn't about you anymore, this is your child you are fighting for. I will go more into the importance of being an advocate for your special needs child in a later article. At the end of the meeting we had a special preschool set up for Elizabeth to attend. She would begin going to Little Early Childhood School (it's especially for children who have special needs - some go all day, some go 1/2 day) every afternoon so she could remain with her preschool class in the mornings where she was already. She even had a bus that picked her up every afternoon and brought her home. She thought that was wonderful! She loved going there. However, the hits weren't finished coming.

The final blow came sitting in Dr. Kerschen's office in May. The Friday before Mother's Day 2006 and hearing the word I dreaded. . . autism. I had taken a tape to Heartspring the week before at Dr. Kerschen's request and as I handed the tape over, I struggled to not cry. I told the receptionist.

"Here is the tape for Dr. Kerschen. She can look at it, but I already know. . . it's autism."

I sat in my car and cried before driving away. The next week sitting there, and hearing it from a professional - was like a sucker punch to the stomach. And yet it didn't hit me fully until I took Elizabeth to Little for her afternoon classes and told the paraprofessional the diagnosis. They had figured it out too already, but now they knew.

Walking away that day I felt as if my whole world had been yanked underneath me. All my hopes and dreams for Elizabeth seemed to be fading away. Devastated is not an accurate enough word. That feeling has dissipated over the years as she makes gains and goes to school each day.

It helps that Elizabeth has a great special needs team. If you are in Wichita and looking for a good magnet school for your special needs child, I would encourage you to look at Sam S. Spaght Media Magnet. They have an amazing special needs team and the children there are wonderful and so are the mainstream classroom teachers. There is hope, and you are not alone, there are others who have walked this path. Even if your child has Autism, like Temple Grandin, children with Autism can learn. We know this, it's just finding the key to unlocking their brains.

There are still times when I don't realize I've gone into denial until it smacks me in the face again. For a second I am there in the doctor's office hearing the words all over again. We have found an amazing church and Ms. Lana is wonderful with Lizzie. She was in the Christmas program last year and she even attended children's camp this past summer. She is different and has trouble memorizing stuff, but she is also doing so well. Without the love of our church family and the support from our families, I don't know if we would be doing this well.

I know I've written about my feelings, so I asked Chris how he felt coming out of the first IEP meeting. At the time it seemed surreal to him. It wasn't real for him yet. But he is doing a great job with Elizabeth today. I am more patient, but Daddy gives tons of hugs and kisses to her and makes it a point to tell her how much he loves her beautiful brown eyes. He makes a great effort and I am so proud of him and how we works with Elizabeth.

Have a good Wednesday. And God's peace be with you.

Love in Christ,


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