How I Found a Good School for My Child Who Has Sensory Processing Disorder
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Some subjects are easy to write to about while others are still painful to this very day. Even though this topic is still painful, I have promised myself for a long time to write about it to help others in a similar situation to know they are not walking the path of Sensory Processing Disorder (SPD) parenting alone and give them strength to know they will make the best decision they can for their child at that particular moment.
When my firstborn was ready for preschool, I researched and visited schools. I used all of my educator knowledge. I made appointments to speak with directors, attended open houses, and “popped” in to ask a question. Finally, I made my decision and we enrolled in a preschool where I felt she was safe, secure, and happy. We were thrilled!
Flashback eight years ago…. My second daughter is an active, stubborn, and a far from easy two-year-old. My husband and I both work so she is being cared for by our two mothers depending on the day. My grandmother has begun to have some health issues and we are concerned about my mom being available. I am pregnant with our third child. We decide that to make everything easier we will just enroll her in preschool earlier than planned. We had planned on doing it that summer and it is March. This time around there is no research or questions, just a simple phone call to the same preschool where our older daughter had graduated from a few years before. I only asked two questions, did they have room for her and when could she start? We are satisfied because we had solved the problem at hand. Little did we know the real trouble was in front of us. She has always liked routine and does not like abrupt changes. We had no choice. My husband and I made the adjustment as painless as we could. She was only going a couple of days a week. We were comfortable because the staff was great and our first daughter had a wonderful preschool education there.
We survived the school year. At points, the teacher expressed how she was concerned about toilet training. I said it was on the menu for summer vacation. She also said occasionally she would have temper tantrums, but very typical for a two year old. I had my own concerns about her lack of words, but the doctor said, “let’s give her a few more months”. She has never followed the milestone books, but always got there on her schedule. We had thrown out the books a long time ago.
During the summer, we started to notice there were more incidents in the school. The teacher was complaining that she did not like other children touching her. She was engaging in fight or flight behavior. She was scratching other children if they held her hand. She started to have more drawn out temper tantrums. It was summer and I was in my third trimester. I tried to push it off as a reaction, but deep down in the pit of my stomach the questions started to rise. What is going on?
Finally, it is the end of November 2008 and I feel like I am living in some surreal parenting drama. I now have three children. One newborn and a two-year-old that is literally spinning out of control before my eyes and I do not know where to turn or what happened. I begin each day thinking I am a teacher and I am getting this under control today! By the time my husband leaves for work she has had her first meltdown over I have no idea what. I wanted to run and hide. One day, I woke up and realized I have to do something. After many phone calls and a lot of crying on my part, all roads lead to evaluation (topic for another day).
A couple of days later, I pick up the phone to call the preschool. After a lot of cajoling on my part, they do share that there are concerns and issues we need to discuss. A meeting is scheduled with the director for the next day. My husband and I arrive for the meeting and we are asked to wait in the lobby. I can see a lot of activity in the director’s office and looks in our general direction. As a teacher, I did not have a good feeling about how this was going. My heart was beating out of my chest. Finally, we are invited in to listen to a laundry list of concerns about behavior, speech, and development. I explain to them we are in the process of getting her evaluated and the pediatrician says she is speech delayed. She will receive therapy to help her, but we need their patience. Also, I question why we were never told about many of these things. I get many excuses like you were pregnant or you did not pick up. I left there feeling like we had been punched in the stomach. We took her home early.
I endured the evaluation process to hear the final diagnosis. I sat there listening as we were told she had a speech delay, low muscle tone throughout her entire body, conductive hearing loss, motor planning difficulties, and SPD. She needed speech therapy, Occupational Therapy (OT), Physical Therapy, and Counseling. Two courses of antibiotics solved the conductive hearing loss issue. The SPD part just confused me. I was assured that somehow OT was going to help. I did not fully understand. All those education theory and professional development classes and I had never heard of this. Luckily for my family, we were given one of the best speech therapists that would later become one of our best advisors. She was the one that helped me make some hard decisions later on. As she worked tirelessly to get her to communicate; first with sign language, which was not an easy job. We worked for months on blowing pinwheels and drinking from straws. One day after picking her up from preschool, there was another incident report. I had tried to explain SPD to her teacher and she would not budge an inch. I suggested books and things that set her off. I explained it was physically painfully at this point for another child to hold her hand and she would react. I drove home with my daughter and I was in tears the entire ride home. Our speech therapist took one look at me and knew. She helped me into the house and we let the kids play. She handed me the book, The Out of Sync Child and said that after I read this book I would have more understanding. Understanding and perspective is exactly what I got. I finally understood how my daughter’s central nervous system was being assaulted on a daily basis.
After enduring mounting incident reports, inflexible teachers, and disappearing therapists, my husband and I were tired, frustrated, and annoyed. At her yearly IEP meeting, we decided to take the leap to a center based program that my speech therapist had been advising us towards for a long time, but I was resistant to putting my child on a school bus. We found a marvelous center based program to take over her services where I no longer had to worry about consistency. Now, we just needed to address the preschool issue.
We decided this school was not working anymore and we needed to switch preschools. My strategy was very different this time around. I made appointments to speak with directors in person and blurted out all of her issues and then waited for a reaction. I did not want my daughter involved in another environment that was not ready to be flexible to her needs or prepared to put her on and off the bus each day. Also, I needed to know they were prepared to deal with her needs as she went through therapy. Only one school seemed ready and willing to help her feel comfortable. They listened and we set up an appointment with the teacher and director where I explained SPD and went over her IEP and services. We finally found a preschool that was more prepared and tolerant of her SPD needs. The lesson for me is that the perfect preschool was not right for all three of my kids. One size does not fit all! If it is not working for your child, do not be afraid to make a change. We were sad to say goodbye, but it was the best thing we did for our daughter.
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Kim Jacobs lives in the state of New York with her husband of 21 years and currently works in an urban school district. She has a wonderful family of three children, two girls and a boy. Their ages are 15, 10, and 7 respectively. She is a teacher that has worked with toddlers to fifth graders in her twenty year education career. Over the years, she has developed a passion for advocating for children with Sensory Processing Disorder (SPD) and anxiety due to the diagnosis of her daughter. At the age of two, her daughter was diagnosed with SPD followed by a diagnosis of anxiety at the age of nine years old.