At 6:00 AM we can hear the sound of our daughter, Kate, scampering around the house. She is singing one of her favorite scripted songs as she comes into our bedroom. She carefully climbs in at the foot of the bed and gently slides herself in between us. She turns right and says “Hello Daddy”. She turns left and says, “Hello Mommy.” “Look its mommy and daddy.” It’s one of Kate’s big moments. Identifying each of us and using a full sentence is a big deal. Especially since it’s her own full sentence and not an appropriate use of scripted language borrowed from her favorite videos.

In December 2005 our daughter, Kate, was diagnosed with autism. This is Kate’s story. Kate was born on June 30, 2003. She was the most beautiful baby I had ever seen. Her eyes were open wide. During her first couple of weeks Kate began vomiting. She vomited almost all of her formula and she screamed often, seemingly from chronic pain. We brought Kate regularly to the pediatrician and Kate received all of her shots on schedule. Kate did not scream very much at the doctor’s office, so I informed the pediatrician about the constant vomiting and screaming. The doctor advised me not to feed Kate too much at a single feeding and we also switched to a formula that was easier to digest. But, Kate continued to scream. I started to give Kate a mild antacid and it seemed to help a lot.

When Kate was 8 months old, we took her to the pediatrician and Kate began to scream while she was in the waiting room. The pediatrician came into the waiting room and said, “Your baby is in a lot of pain.” Yes, I knew she was in a lot of pain and I felt relieved that finally the pediatrician was able to see it for herself. The doctor prescribed a medication and some powder to help Kate gain a little weight. Kate was always in the 10% for weight.

Kate began to feel better and she did gain a little weight. Several weeks later Kate began to hand- flap. I also began to notice that Kate did not babble all of the sounds that most babies make. When Kate turned 1 year old, I noticed that she did not respond to her name consistently. But, I took comfort in knowing that Kate turned over at 5 ½ months, sat at 7 months, cruised at 11 months and began walking at 1 year. Physically Kate was achieving all of her developmental milestones. However, when Kate began to crawl, she crawled on one knee and used her other foot to walk. It was odd. I brought her to the pediatrician because I was concerned about it. The pediatrician dismissed it as an eagerness to walk. So I didn’t think twice about it.

At 13-14 months I realized that Kate had no speech and she was unable to clap her hands. I began to wonder what the unusual hand –flapping motion meant. The doctor referred me to an Early Intervention program and noted speech delay on Kate’s medical. This is where our family’s journey into special needs begins as we uncover exactly what Kate’s special needs are and what treatments are available. We begin the difficult task of navigating Early Intervention, Committee of Preschool Special Education and Committee of Special Education to advocate for services.

We selected a well-known agency to complete an evaluation to determine if Kate needed services. All evaluations were conducted in our home. A special needs teacher came to our house and played with and observed Kate. She informed me that Kate had no cognitive delays and that she did not need a SEIT teacher. An Occupational therapist performed an evaluation and found that Kate did not require OT services. A physical therapist evaluated Kate and did not determine that Kate had a delay that required physical therapy. A familiar looking speech language evaluator named Sheila, came to our home. She determined that Kate had a minor 10% delay in speech. After we talked for a while I realized why Sheila looked so familiar. We had been volunteers at the same ambulance corps 17 years ago! As Sheila and I became reacquainted she decided to do Kate a favor and indicated in her evaluation that Kate had a 30% delay in speech. This allowed Kate to receive speech services 2 times a week for 30 minutes. By the time Kate was 2 ½ years old, she had mastered many words. But, Kate was unable to talk in sentences, did not respond to her name or commands, hand-flapped, had very poor feeding, was unable to clap or jump, could not point, did not engage in dramatic play, could not track a ball and had very little eye contact. I feared the worst, but friends and family members told me that Kate would blossom in her own time. Finally Kate’s speech therapist told me to have Kate evaluated for autism.

I immediately telephoned the pediatrician and asked if Kate had autism. The doctor said that she had been meaning to call me and that she was concerned about Kate’s development. She told me that she felt that Kate might have autism. I screamed at the doctor that she should have told me about her concerns herself immediately. Why did I have to call her to ask about it?

I had Kate evaluated immediately by a psychologist. The psychologist came to my home and assessed Kate. She told me that Kate could be diagnosed with either Pervasive Developmental Delay (PPD) or autism. She told me to have Kate evaluated by a pediatric neurologist. I had Kate evaluated by a pediatric neurologist three weeks later. Again, I was informed that Kate could be classified as having PDD or autism. The pediatric neurologist explained the difference in the two diagnoses. But, she explained to me that if she classified Kate as having autism, it would be easier to get the services that Kate requires more quickly. So, I agreed to her evaluation and assessment of autism.

It was very difficult to find an available seat for Kate in any Early Intervention program. Fortunately, I operate several day care centers and I was able to keep Kate in a small group of 8 children with 1 teacher and 2 assistants. Early Intervention services were brought into the day care center. Kate had 15 hours of ABA/ SEIT instruction, 5 half hour sessions per week of speech therapy, 4 half hour sessions per week of Occupational Therapy and 4 half hour sessions per week of physical therapy. I was able to create a therapy room inside of my day care center so Kate could work either inside her classroom with typically developing peers or privately.

Kate continued to have periodic diarrhea, picky-eating, bloating, yellow foul smelling stool and periodic constipation. With advice from a physician, I supplemented Kate’s very self-restricted diet with vitamins and digestive enzymes. I also had her tested for environmental and food allergies. Kate began taking allergy medication, her chronic runny nose cleared up and Kate’s bowel movements improved but her stool was still light and foul smelling. I brought her to a pediatric gastro-enologist. He said that Kate had inflamed esophagus from acid reflux but otherwise her digestive tract was normal.

One year later, we brought Kate to be reassessed by another pediatric neurologist. The neurologist believed that Kate was moving well physically as she was able to climb onto the exam room table without assistance. He inquired about Kate’s therapy services, what type of therapy she was receiving and how frequently she was receiving them. He determined that Kate would progress further if she had more ABA services. He wrote a letter requesting an increase in ABA services.

I asked for an additional meeting with the CPSE Administrator for a reevaluation of Kate’s IEP. The CPSE Administrator agreed to reconvene to change and update Kate’s IEP. The CPSE Administrator was aware that I had been unable to locate a physical therapist so she agreed to increase Kate’s ABA/SEIT services to 25 hours per week if I agreed to waive Kate’s physical therapy services. She felt Kate’s services were to “rich” and I must give up some treatment to add on the much needed ABA hours. We reluctantly agreed. I had enrolled Kate in weekly hippotherapy (horseback riding) which cost $75.00 per week and a weekly special needs swim class which cost another $75.00 per week so I felt that Kate had access to sound therapeutic physical therapy services. I had also enrolled Kate in music therapy for $75.00 per week. We discovered that Kate more than likely had perfect pitch.

Lauren M….

Kate’s ABA/SEIT at the time, was experiencing some personal difficulties and frequently missed daily sessions with Kate. The SEIT teacher’s father had been diagnosed with stomach cancer. So, on days when she came to work with Kate, she was preoccupied and depressed. What was once, wonderful, meaningful, helping Kate progress therapy became a stagnant, often rote; let’s just get through it, unbeneficial, empty, meaningless waste of valuable, greatly needed, ABA hours. So, with regret I searched for a new agency that could better suit Kate’s needs and handle her increased hours.

Kate got very lucky! I found an agency that could take on Kate’s 25 hours of ABA and they just happened to have their best SEIT/ABA therapist available! Lauren worked wonders with Kate. She immediately recognized that ABA had probably taken Kate as far as it could. It was time to try some other techniques to help increase Kate’s interaction with others and increase her ADL skills. Kate began to blossom. Lauren worked most of her hours in Kate’s classroom with typically developing peers. Lauren worked with Kate for one year. In that year’s time, Kate steadily progressed. Kate became potty trained and began speaking in sentences. Many of her sentences were scripted but she used them appropriately. Kate began to play more and she also learned how to jump and clap her hands! Safety was an issue because Kate had no fear of cars or falling. But, Kate was responding to her name most of the time and made appropriate eye contact. Feeding was still an issue.

Time for Kindergarten…. Our first CSE meeting

Oh how we dreaded sending our daughter to a new school. It was so hard. Would they understand her? Would she be safe? We attended Kate’s CSE meeting. We expected that CSE would be linked with CPSE. It wasn’t linked at all. The man in charge of Kate’s CSE meeting asked what our goals were for Kate and if we had any immediate concerns. I explained to him that Kate did not have safety awareness and that she had many sensory issues and required occupational therapy. He informed me that occupational therapy is not based on scientific fact, it is based on opinion. Therefore it is not a real therapy and Kate would not receive any occupational therapy services! He informed me that Kate required speech therapy and physical therapy. He further explained that there are only so many hours in a school day and that she needed time to be in class to work. I inquired if Kate could have occupational therapy after school and he informed me that all services must take place between the hours of 8:30 AM – 2:30 PM. “What kind of work do you expect Kate to do in the classroom?” I asked. “We will leave that to the classroom teacher” he said. I said, “Ok, but Kate cannot sit at a desk like other students. She requires a lot of proprioceptive input to address her sensory needs and she needs feeding therapy.” “We do not have feeding therapy in school” he said. I began to get really angry. “OK, so you expect to ignore my child’s sensory needs and not make sure that she gets the nutrition she requires for her brain to function?” Not acceptable! Kate cannot eat meals independently and she requires support. I insisted that feeding therapy be put onto her IEP. Done! It was our only victory for Kate. We left feeling upset, unheard, alarmed and defeated. How could this happen? How could I have been so unprepared? How did we allow Kate to lose her occupational therapy services?

Eventually we received a placement recommendation for Kate through CSE for kindergarten. We called the school and took the first available appointment for a tour. What a nightmare! Kate would be “trained” to participate in morning meeting by sitting for 15 seconds and pressing a button as a reward. There was no sensory equipment in the classroom at all. There was nothing for Kate to climb up on and crash down on. There was nothing for Kate to jump on or squeeze. Instead, she would spend a lot of time at a little table to do ABA and all related services were in the hallway! It was a dangerous hallway where Kate could escape from the school. It was an open hallway with two small desks for related services. This is where Kate would have speech therapy! How? I would be too distracted to flip through a magazine in this busy, noisy, crowded hallway. How could Kate with all of her delays, block out her distractions and focus enough to get any speech therapy benefit? And, there was very little physical therapy equipment. Physical therapy would be completed on the staircase. Kate could walk up and down the staircase as her physical therapy! No way! We decide to look into placing Kate in a private school. We looked at several. We found one that would suit Kate’s needs and offer her what she requires. We hired a reputable attorney and prepared for a lawsuit. The lawsuit was another nightmare but we won!

Kate’s life consists of constant battles. She battles with her sensory needs on a daily basis. She has trouble wearing shoes on her feet, but sneakers are ok. So, we dress her up for the holidays and she doesn’t wear shoes. It is our little compromise. She battles her sensory needs during feeding. She craves movement and she can run really fast. She spins on the rare occasion. But, she can be seen doing cartwheels, handstands and summersaults. Kate loves videos and has mastered the ipad. Kate loves music. She has learned to play her favorite musical tunes by ear on the piano and xylophone. She sings all day, like an angel. Her battles have become our family’s battles. Her hurdles are our hurdles. Her victories are our victories. We rejoice in her accomplishments no matter how small. And, we find ways to support her in all of her efforts.

Discovering Kate and helping her unlock her potential hasn’t been easy. Along the way our family has learned the meaning of patience, felt the kindness of strangers, watched our friends with kids the same age as ours move on, let go of expectations, learned to think outside of the box, and learned that little things are precious and worth celebrating. I remember the first time Kate called me mommy. She was three years old. I was on cloud nine. It was nice up there. I plan on visiting cloud nine often.

Now I would like to thank Kate’s little sister “D” for her persistence in trying to play with Kate and hardly ever getting frustrated with her. If Kate could put these words together, I know she would say, “Thanks “D”. I love you.”

And a special thanks to all of Kate’s many dedicated therapists, who never give up, who always have hope, and really enjoy discovering our daughter.