Jessica's Story or What I Remember Never To Forget While I'm Being A Teacher

Way back when I was in school, learning just how to be a Special Education Teacher, I had the opportunity to listen to an amazing woman speak. She wasn't a professor. She wasn't a teacher. She wasn't a therapist. She was a mom. She was a great mom. She was the kind of mom who... Here's the thing - she shared the story of her family with a room full of would-be teachers. Her story is what truly gave me the passion to do what I do now. I would like to share her story with you, word for word, the way that she shared it with us. Why? Because it changed the way that I look at everything, as a teacher, and as a parent, in an important and truly permanent way. I changed the names in the story because they aren't mine to give out. But this story is real and it is powerful. It is a story for teachers, for students, for parents, and for grandparents. This is a story for everyone who knows and loves children. So, here it is: Jessica's Story or What I Remember Never To Forget While I'm Being A Teacher:

Paul was born full term after an uncomplicated pregnancy but complicated birth. His birth began a length journey of diagnosis and misdiagnosis. In less than 24 hours, Paul had been identified as having low blood sugar and identified as struggling to eat. The hospital staff proceeded to force feed Paul. What wasn't accounted for was that babies often do not eat within 24 hours of delivery. Once Paul wanted to eat he ate appropriately. In response to the low blood sugar, the nursing staff came in every two hours to slice his ankle with a razor to test his blood sugar. After almost twenty-four hours, the staff realized that the machine was not calibrated correctly and there was nothing wrong with Paul.

We then brought our baby home believing to have left that mess behind. We enjoyed him immensely only to discover a few months later that Paul had a breathing problem. I, as well as my mother-in-law, had noticed that during sleep Paul would stop breathing for over 15 seconds, but would then arouse and continue to breathe. I made an appointment and brought Paul into the doctor's office the next day to see the doctor on call. I began to tell the doctor that I believed Paul had sleep apnea. The doctor told me not to say that word, because I didn't know what it meant. I continued to explain that I had done some reading and believe that he has sleep apnea. The doctor again reiterated that I was not to say that word because I did not know what I was talking about. Finally, exhausted, I explained to the doctor that my son was not breathing for short periods of time and she needs to do something about that. The doctor again dismissed what I said and suggested that babies just breathe very shallow and there was nothing wrong with my son. Reluctantly, the doctor prescribed a sleep monitor.

When I was able to meet with my regular doctor, he was supportive and, in fact, immediately signed us up for apnea testing at the  Children's Hospital. We stayed on the monitor. The apnea monitor was known for many false positives. What that means is that every night for a year, I would wake to an alarm that was comparable to 3 fire alarms. I would rush out of bread, run to Paul's bed, turn off the monitor, and arouse my baby who probably just fell asleep after hours of crying. This happened every night and there were nights that it occurred up to 3 times. Six months later after our visit to Children's Hospital, the report came back and it said that Paul needed to be on an apnea monitor immediately.

We were able to move through the apnea episodes and say goodbye to the dreaded machine and no longer fear for the life of our son. We finally had our little boy back. We celebrated his first birthday. A happy milestone that marked leaving the entire mess behind. Figuring one day, it would be a story that we would tell when he had his first son. Things were great. Paul is so happy that he has picked up the name happy Paul. He was delightful and fun and interesting but there was something wrong. He didn't respond like I thought he ought. Ahh!, I am a first time mom, what do I know. He will be fine. Words aren't coming like I thought… but he is a boy! He is so much fun. He loves mud. He loves water. He loves trains! He loves his dad!

Now he is two. There is something wrong. It is hard to see because he is so jovial and compliant and enjoyable. People love Paul. I thought at one point this is ridiculous, I know he is a beautiful boy but people are making such a fuss. I thought people were just being kind but it got to be the point of annoying. He is so beautiful. He is so happy! Yes, yes, yes… thank you!

There seems to be something wrong. Paul is now two and he isn't talking hardly at all. People tell me that it is because I am a good mom and he is my only child and I understand everything he wants and respond so he doesn't have to use his words. O.K. seems reasonable. But it doesn't seem accurate… way down deep in my knowing, I know something is wrong. He is now 2 1/2 and still isn't able to articulate like other's his age. Oh, Jessica, don't worry, boy's learn slower. Einstein didn't speak until he was seven. If I heard that one time, I heard it 20. He is now 3 and still no one is hearing me. The minimizing kept coming. The excuses were repeated. Everyone wanted Paul to be o.k. I am dying because I know… I just know. There is something wrong.

So, we move to New York. I immediately signed him up for evaluation. The testing day came. I was terrified, mortified and relieved all in the same moment. As I watched the cognitive testing, I could see the look in the tester's eyes, I knew. It is clear that my beautiful son hasn't developed the cognitive skills he needs. Now at age 4, he couldn't identify colors or shapes. The testing continued and with each test it became clear that Paul was not at an age appropriate level in many areas. The tests were given and the therapy sessions began. Every Monday, Wednesday, and Friday, I would have to take Paul and now an infant to speech therapy sessions. On alternative days, he would have occupational therapy. I was elated and fearful. But each session that I could watch through a one-way mirror would rip my heart in half anew. Each day I had to live in the horror that something is wrong with my son and he just doesn't get his world. I used to ponder why after preschool on our 20 minute drive to speech therapy. Why Paul couldn't tell me about his day. The other kids would come out of pre-k babbling about the great things they did. They would joyfully share what songs they learned. They would exitedly show papers that they colored. Paul couldn't color - Paul couldn't identify the bunny on the page that he was supposed to color. I feigned excitement and pride - all the while feeling like crying. The other kids could do it - why not Paul. I would talk to the teachers about Paul and they would say that he is fine and not to worry but I noticed none of the other kids played with Paul. He was always playing alone. But the teachers loved him because he was so happy! So the nightmare continued and I could go on and on about how friends loved Paul and would try to tell me he was normal. Other friends would gasp in horror when I was confused about wy Paul is hitting the floor with his head. Other friends' children now at age 5 are talking at length about dinosaurs and trucks and baseball. Then one day, I had realized that my son was now 5 and I had never seen him run. He could walk fast but he had never full out run - you know, like boys are supposed to do. At 5, Paul still couldn't catch a big ball. But, boy, is he happy.

So, Paul is 5 and it is time for him to get on that big yellow bus to go to school and I am mortified. I am deeply scared. Now all mothers have a tough time when their first son goes to school but I am really scared. We went out to get ice cream one night and took a drive to the school and I started to sob uncontrollably. I tried to hide it because Paul was in the car. Pete was concerned. I shared with him that that I am deathly afraid that Paul will get lost at school. He calmed me but the reality is that I have been Paul's protector and shield to keep him safe in the world because he cannot. How in the world can I let him go on the bus? Who will protect him?

The beginning of school for Paul went OK and he loved the bus. I just waited. It was going to come. Yet, maybe, it wouldn't. But I knew that it would. But maybe everything would be okay. But I knew differently and I knew that in that place where I always knew it.

The phone call came…

"Mrs. Todd, this is Paul's teacher. It's been several weeks into the school year and Paul is struggling to follow directions, He can't seem to do what the other kids are doing. Mrs. Todd, could you come in for a meeting?"

I can't tell you how I ended the conversation except to say that I sobbed for close to an hour. It was one of those moments when reality came into my life… the reality I have been crying for and screaming for and now that it is here the pain in my gut is horrible. I called my sister who, by the way, is also struggling with similar issues and we cried together. I got off the phone and was absolutely fed up with feeling out of control. I was fed up with not knowing. I was sick and tired of the mystery of my son's limitations. I decided to figure it out.

I read and I read and I read. I found a diagnosis that mirror many of the symptoms that Paul was having. Now, while I am not qualified to diagnose these things - I am an intelligent mental health clinician and I can get a good idea or at least get in the ballpark. Paul had a central auditory processing disorder… more specifically an expressive receptive language disorder. I was thrilled. It was all coming together. I wrote up a 5 page memo with his physical history and family history and then the symptoms of this disorder and then rated each symptom from a mild to a severe presentation. I was elated. I went to school to meet the kindergarten teacher, speech therapist, and special education teacher. I handed them all a copy, except the special education teacher, she couldn't make it. They expressed their gratitude for the paper and we moved onto what they wanted to tell me. I got my first polite blow-off in the form of, "Thank you, Mrs. Todd. Have a nice day, Mrs. Todd." The meeting was over.

The year passed with some interaction and some assistance for Paul but now, at the end of kindergarten and going into first grade, he still didn't know his letters. The separation between him and his classmates was profoundly obvious.

We decided to get him an outside evaluation. We met with the clinical psychologist. We talked for a while but there was a moment and she asked me what I thought was the issue. I proceeded to tell her and she responded with a resounding, "no," that can't be because speech therapy would have worked. I was shot down again. I felt like one of those WWII pilots who just kept getting shot and shouldn't be flying but was flying none-the-less. She did her testing and she came back with the diagnosis that Paul was under the autism spectrum.

My world had stopped. I couldn't fight any more. I couldn't even cry. OK, thank you. We will revisit this in a year. It was the fatal blow. I couldn't grasp it. I left the meeting and called my dearest friend to share the world stopping news and I heard, "I am sorry honey. Maybe you should talk to someone who understands this." As I knew it, the world had stopped. I gave in. Maybe I was that crazy irrational mother who was just in denial.

We made the adjustments and he was given the diagnosis. They win. Paul finished 1st grade still not being able to read. Hey, he is autistic - does an autistic child even read? He still can't really on a consistent basis identify letters or their sounds. He may never be able to read other than sight words, the teacher said. We just don't know.

Second grade came. He enters school with a beautiful, wonderful teacher named Danielle McSherry. She is calm, quiet, direct, and is paying attention to Paul. She sees Paul. She never saw a diagnosis. She worked with him and worked with him but he required an enormous amount of attention. She had an entire class and she had Paul. She couldn't do it all but she worked really hard. I would come in and observe and saw that my son never paid attention. He wasn't listening to the teacher because he couldn't. Danielle and I had several conversations.

As it is my parental right, I called a meeting of the school administrators to address the issue. It got postponed and pushed back and then I got a phone call from the school, the Assistant Superintendent for Special Services and she had made a trip to observe Paul. This is the woman who decides whether or not Paul gets any services and she said that she observed Paul in the classroom and felt that there was nothing wrong with Paul and doesn't believe that he needs and assistant in the classroom because he is just fine. I was stunned and, this time, so profoundly angry I skipped right over sad. She didn't want to give my son support in the classroom. My son is profoundly behind. He is at least two years behind his classmates. He cannot count in a one-to-one correspondence. He cannot add. He cannot write words. He can barely read and that is only with 2 or 3 letter sight words that he has memorized. She felt he was fine and didn't need an assistant. I came unglued and she was going to get a talking to.

My husband and I prepared for what is now known in the school as "the meeting." Now, CSE meetings usually last about 15 minutes. This meeting lasted 2 hours. We talked and we struggled and we disagreed. It was so contentious that the parent-advocate was defending the school board. I asked the parent-advocate if she had ever even seen my son and she replied, no. The conversation ended. She was my parent advocate and she was defending the board. At the end of two hours the principal, who had remained quiet, looked at the teacher and asked the question that changed everything in our world. Mrs. McSherry, what have you done with other students like Paul?" Mrs. McSherry's angelic voice and spirit responded, "I have never had a child in my classroom as disabled as Paul without an assistant." There it was. Those were the words. That was the moment. No psychologist or psychiatrist needed. Just one teacher that changed our world. Within two minutes of that statement - my son was seen. No diagnosis could do that. One teacher who loved my son and said what had to be said I the face of opposition. My husband and I walked out of the meeting stunned and shocked. "Did what just happen, happen?" "Was that real?"

Now we are at the end of third grade. My son can read. He can read at a definite first grade level. He is adding and working on subtracting. He is writing stories. He is phonetically writing words.

Oh, and did I mention that a year after the first diagnosis of autism, they took away the label and labeled him PDD NOS. When discussing this the psychologist said that his issues were very close to a central auditory processing disorder. Oh, now where did I hear that? Oh, yeah, remember back to kindergarten and the five-page memo.

This is just the story of Paul. I haven't really mentioned that James has the same disorder. James was identified very early. He had speech therapy at the age of 2 and then again started therapy at 3 and is now the age of 5 and receives therapy 5 times a week. He is working on the exact same issues that Paul at age 9 is working on. James is doing well. He however has had the additional struggles of sensory problems. James struggles with frequent emotional outbursts, which we have learned to respond to by doing physical activity. He has amazing therapist who identified and are working together to get him ready for school. He isn't as lost as Paul was. He struggles with other issues but is doing very well.

I am the mom of 3 children, two of which are disabled. We are a beautiful happy family with challenges and struggles. Sadness and grief and loss are a part of our every day lives. Just last night I was at a friends' house and the husband said to the wife, "Did you see our son's glowing report card?" She responded, yes. She looked at me and asked if that was painful. It was. My son's report cards are not glowing. My son, at age 9, cannot do what her son at age 6 can do.

I will wrap this up with a final vignette from my process as a mother of Paul, James, and Samantha. I was grieving one day the issue with Paul. I was grieving the loss of a normal life for my son. Then I thought what was normal. That is someone else's' definition. My son is just fine. He will have his struggles. He will have his challenges but I had mine and you have yours. Paul has a supportive loving family who will help him get into his life in the best way that we can. We will prepare him to be the best he can be mentally, emotionally, and spiritually. But isn't that what you are doing to do for your kids? Isn't that what parents do fro their children? So, Paul is going to be just fine. Will he look like the other kids - no, not the norm, but isn't that just a statistical term? It isn't important if Paul is part of the norm - the statistical average. It is important that Paul is Paul and on that standard, he is excelling.