• A California Mom: Looking back 31 years later
• Nicole: I have done much more than I ever thought I would
• Lisa Aitkens: Our daughter has improved on all levels
• Chynna Laird: "My Sister Is My Bestest Friend"

A California Mom: Looking back 31 years later

Thirty-one years ago, after many struggles with my 4-year-old second son, I was casting around for answers and called the local Easter Seals organization. I was familiar with their work with kids with cerebral palsy and thought they might know where I could have my son evaluated. With kindergarten approaching, I thought he might be dyslexic.

They conducted the battery of tests at their office and diagnosed him as having Sensory Processing Disorder, then known as sensory integration dysfunction. We found an OT, and she laid out a demanding course of therapy. She was always optimistic; my son would catch up on the physical skill delays eventually, she said. Now he says he can remember when things became easier, at around 10 or 11.

I had been frustrated at his lack of progress, especially in comparison with his brother. As a young mother, I had planned to return to school when my second child was three. The demands of treatment and general disruptions caused by a child with SPD made that impossible until he was settled in elementary school, around 8. Even then, school was a frustration to both of us; he was clearly a bright child, but his grades were abysmal. His self-esteem suffered from the time he realized that most kids were much more fluent than he in speech and movement. The self-esteem issues resulted in behavioral problems.

There were bright spots. Perhaps because language was so difficult, he slowly began to excel at math and science, ending up spending eight summers at a science camp and progressing from camper to counselor to National Science Foundation summer intern in high school. Still, traditional academic success eluded him until he was 20.

At that point, he realized that his future was up to him. He re-enrolled in community college, taking remedial courses in reading and writing. He continued to excel in science and math, getting top grades in science and math and eventually transferring to a top state university.

Eight years after graduating from high school, he completed college with a degree in chemistry. After a couple years of laboratory work, he leveraged himself into a job where he simultaneously worked, studied for his doctorate, and - for the first year - also worked as a teaching assistant. Four years later, he received his Ph.D. and soon after was accepted into a post-doctoral fellowship at a top private university.

Now, there seems to be nothing stopping him. From that slow start, he has accelerated his rate of progress at each stage. Perhaps his struggles gave him more resolve. When he knows what he wants, he goes for it with a fervor.

Bringing him up and helping him achieve success was much more demanding than a "normal" child. At times it was hard to be patient and to put aside my own plans in order to invest in him. But as a parent, I always desired the best for him, and, even when the schools threw up their hands, I saw his potential, his many talents, his good-nature, and his care for others. Maybe it took longer for him to grow up, but he is now a sensitive, caring and contributing adult on whom I feel I can rely.

No two stories are the same. It was reassuring to get a diagnosis and a therapy protocol. However, despite the relatively quick restoration of his vestibular capabilities, at 4, he had a lot to make up. I only wish he could have received therapy earlier so that the aftereffects could have been less. It was a long haul to help him become a self-sustaining adult. But it did happen for us, and it can happen for you. I think now that SPD is better recognized, more children can begin therapy earlier, and society - schools and support groups - can lend more assistance to parents.

As with any disability, there is a fine line between protecting and coddling such a child and expecting him or her to be like other children. I think it is most helpful to think of a sensational kid as a "normal" child but one who will take a little extra assistance and time to grow up. Early diagnosis and treatment can reduce the time it takes to get the child on a typical growth track.

And don't forget to take care of yourself. I could have had a better support system but, even without one, I returned to school when my son was 8 and have had a long and productive career in my field. And now I have two married, well-adjusted children, and my sensational son with SPD is the proud father of my granddaughter

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Nicole: I have done much more than I ever thought I would

My name is Nicole, and I was born on May 12, 1982, in Boston. I am 26 years old, and I have Sensory Processing Disorder (SPD). I was diagnosed at age seven, when it was called sensory integration dysfunction, and it was something that changed my life.

After my diagnosis, I had extensive physical and occupational therapy twice a week and also in school. These helped me with everything from balancing to writing. The help was greatly needed and worked in my favor. My parents fought with the state so that they would pay for my services because insurance would not cover it.

Living with these disorders as a child was tough for me because the other children thought I was different or, in their word, "weird." My mother signed me up for swimming lessons because we thought it would help, but that's when I encountered my most traumatizing moment.

It was the first day of swimming lessons, and the teacher had us put on "bubbles" to keep us afloat. We all got into the pool and stayed at the shallow side. The teacher then instructed us to swim to the other end of the shallow side. All the children went to the other side but me. Even though the bubble would have kept me afloat, I couldn't move. I was scared. I looked at my mother, who was in shock, and I felt like I let my family down. I felt embarrassed in front of the other children. That will always be one moment that sticks in my mind.

It was tough for me to go through all of this but with the help of family, friends, and therapy, I was able to pull through and come out on top. I accomplished a lot of things that I never thought I would. I ended my therapy in eighth grade and walked away with more confidence in myself that I ever had. Each year, I accomplish more and more.

Now I am 26 years old and have done much more than I ever thought I would. I never let any of the people that told me I couldn't get in my way. I went on to live away at college and, within five years, I graduated with honors. Honors were a big accomplishment for me, and it made me happy. I also went on a cruise with a great friend of mine and accomplished more goals there. I have made music a big part of my life and would like to work in that field, but I also would like to advocate for others with SPD.

If you asked me when I was seven if I would be doing all of this, I probably wouldn't have believed you. I am glad I had all the help and support that I needed because, without it, I would not have been able to accomplish all these goals. I am very grateful for all the support and all I have done, I wouldn't trade it for the world.

To the other adults out there and parents, you can over come and you will. Don't give up no matter what life throws your way. Keep living life to it's fullest, and you will be greatly rewarded in the end.

Nicole, 26, Boston

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Lisa Aitkens: Our daughter has improved on all levels

(The following was submitted as a letter to the editor of TIME magazine after its December 10, 2008 report about SPD.)

In regards to the 12/10/07 article (in TIME magazine) by Claudia Wallis entitled, "Is this Disorder for Real?" you bet it is. With an advanced degree and 20 years in the field of medical psychology, you would think that I would be perfectly capable and equipped to understand the behavior of my own 6 year old child.

And yet from Day One, we were completely baffled by her behavior and reactions to seemingly normal environmental stimulus. What appeared quirky and sometimes cute in her early years (her obsession with feather boas, her tendency to hurl herself into the ocean, the sand, the mud, her daredevil antics, the off-the-charts emotional meltdowns) became much more problematic when she started preschool and disastrous in kindergarten. She couldn't sit still or pay attention, she made odd noises when anxious, she had difficulty socializing with peers, she had major emotional outbursts. She was terrified of the school bell. She did not fit the diagnostic criteria for ADHD or Autism, the disorders that would typically produce these types of behaviors.

The response by her school was largely punitive and included many trips to the principal's office, suspension, suggestions of sending her home early every day and even recommendations of parenting education for myself and my husband. It wasn't until we connected with an occupational therapist at Therapy West in Culver City, California, that we discovered she had all of the classic symptoms of SPD. It was as if someone has finally handed us the operating manual for our child. This diagnosis connected the dots between those "quirky" behaviors and reactions that we had been observing since her birth.

She has been receiving occupational therapy for three months. Her school experience has improved on all levels as a result of the therapy, and a new understanding on the part of the educators that she is not a "behavior problem" but a child who needs movement and accommodations in order to function within a structured setting.

Parents with children who have diagnoses of ADHD and Autism had to fight long and hard for recognition, support and reimbursement for the services that their kids need, just as we are doing now for SPD. My child is just as deserving as those kids of services through the school system and reimbursement through insurance for occupation therapy. We are currently paying out of pocket for OT services. At least 3 other kids in her classroom with many of the same behaviors who have diagnoses of ADHD and Autism are receiving OT paid through the school district. My daughter is considered "high functioning." With short-term OT and long-term education on the part of those surrounding and supporting her, the prognosis is good.

Is this disorder for real? Come meet my daughter and live at my house for a day or two and then you tell me.

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Chynna Laird: "My Sister Is My Bestest Friend"

My daughter, Jaimie, was diagnosed with SPD when she was only two-and-a-half. We'd already lived with SPD since she'd been born. Now we had a name for it.

Oddly, it was such a relief to know what boiled inside of Jaimie because we were then blessed with tools to relate to her–on her comfort level–instead of attempting to force upon her what was considered "normal."

One of the biggest steps for Jaimie was starting preschool in September 2007. She was terrified: of the new environment, of new people, and all without me–her comfort blanket. But she drew strength from a special source: her younger sister, Jordhan.

Jordhan and Jaimie have always been extremely close, but there have been times where Jaimie has been jealous of her younger sister's ability to do things she isn't able to bring herself to do (like meet new friends or enjoy hugs). So we had the idea to enroll Jordhan with Jaimie in preschool as a familiar face since Mama couldn't stay with her. It worked wonders.

Not only did Jordhan's feisty nature and love of meeting new kids ease Jaimie's anxiety, it also helped Jaimie to feel brave enough to participate in the preschool activities and even respond to other kids!

Jaimie will start kindergarten in the fall. Jordhan won't be able to go with Jaimie because she's too young. If you ask Jaimie whether she'll be okay, she says, "I think so. I just have to think about Jordy and I feel brave. Jordy is my sister, and she's my bestest friend."

I'm so proud of how far Jaimie has come–it gives me hope.

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