A few months ago it was suggested to us that our son, Jojo, might be affected by Sensory Processing Disorder. SPD, also sometimes called SI for Sensory Integration Disorder is totally new to me. I had never heard of it and was disinclined to agree with the diagnosis.
I read a title recommended to me, The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder, and saw plenty of information that seemed to “fit” our situation.

We are still at the beginning of our journey with sensory processing disorder, and I wanted to reach out to experts and parents of children affected by SPD to help educate myself and others.

This first interview on the subject is from Jeni, the mother of a 4 1/2 year old girl with sensory processing disorder.
Mom Most Traveled: How did you discover your daughter had Sensory Processing Disorder (SPD)?

Jeni: My daughter showed a consistent delay in milestones from the get-go, she missed every milestone such as rolling over, sitting up, crawling, as well as walking. She also had a hard time eating, seemed like a strong gag reflex as soon as we started pureed baby foods around 6 months. She simply became my little puker anywhere from 3-5 times a day.

And she couldn’t stand loud noises such as the garbage disposal or vacuum but we chalked that up to the inconsistency of those things running. At 9 months the pediatrician had recommended an MRI since she wasn’t sitting up on her own, but with this being my only child, I thought it was my fault. I needed to work with her more. I was a full time working Mom and she had been in an in-home day care since she was 4 months old. Although a very warm and loving care provider, as she became like another grandparent to my daughter, I figured maybe she even bit off more than she could chew and my daughter wasn’t getting the physical attention/challenges she needed. At any rate, we passed on the MRI and worked with her more. She did start sitting up on her own with about a 3 month delay compared to other children so not drastic but enough we were still concerned.

Somewhere between 12 and 14 months, we also noticed major transitions were hard for her, most often, the transition from the house out to the car, once in the car she was happy as a clam. The transitions seemed to be the hardest to deal with and the most frustrating because she would scream and cry without any clear indication as to what what wrong with her. She wouldn’t climb or challenge herself like other kids physically, and she had a unique crawling technique where she turned her wrists inward but she could still get from point A to point B.

She was a light light sleeper. To keep her asleep at night we were still wrapping her tighly almost for comfort and leaving the bathroom fan running to drown out neighborhood noises or inconsistent noise through the house. Her sensitivity to sound was really apparent outside, we swore she could hear things like planes and trains long before we could.

But all in all, it wasn’t until she was 18 months of age we pressed the pediatrician for more help. She said we could try Physical Therapy but we most likely just had a late bloomer on our hands. She also referred us to a Neurologist who we saw first, and he said the same thing with just a physical exam that she was a late bloomer. Oddly though and ironically my daughter had her first febrile seizure in his office. He explained what it was and that she was probably running a low grade fever, get her home, get her some Tylenol and she will be fine. I did exactly that and the seizure did subside. I called the pedicatricians office and the nurse said the same thing so no follow up was even done on the seizure at that time.

Next we saw the Physical Therapist, and after one visit, she said your daughter seems to have Sensory Processing Disorder. We never heard of this, nor did our pediatrician give any indication of this. Thats when our homework began and with the help of the Physical Therapist we launched into 6 months of therapy, once a week. We always had homework from the Physical Therapist such as climbing stairs, wrestling or rough housing with her in play, climbing ladder on a slide, walking straight line on a curb, etc. Each session with the physical therapist was a challenge, she would scream and cry knowing the therapist would challenge her. As a parent hearing those crys are hard but knowing the outcome was positive, it only lasts the first few months and you see such a difference. In 6 months she was not only physically stronger and trying new things on her own, but you could see a difference mentally in her interactions with people. At the end of those 6 months (24 months of age), we graduated onto Occupational Therapy to address more of her fine motor skills, oral skills (she was still a big drooler, and actually continues to be now at 4 years old) and the behavioral transitions. Another month or two in, we also started Speech Therapy, again to help with some of the oral skills but also with both annunciation and language concepts.

We have continued both OT and Speech to this day and my daughter is almost 5 years old (July 19, 2009). She is a whole other kid from two years ago but we still have some day to day challenges. But I don’t know what we would have done without the guidance of these therapists. Behavioral, or what appears to be, behavioral issues are still not appropriately addressed by pedicatricians. They are not they fully understood by schools, teachers, or care providers. These kids are still not seen as being sensitive but being behaviorally bad. For my daughter, SPD rules her sense of smell, taste, texture, sound, and just overall environmental stimulus, and in ways that no SPD kids are alike. For example, I have read that many SPD kids are over stimulated by large crowds at saw the circus, movie theater or other large events. My daughter thrives in crowds and gave her first stage performance this year, she loves it. Her break down is often one-to-one with someone she is just getting to know, thats when her actions and reactions are the most extreme so easing her into those situations is a must. So to reiterate, no two cases are alike. The best thing we can do as parents is pay attention to our own children, watch, wait, listen, and I can’t emphasize enough about patience and getting appropriate help. I often explain to care providers or her teachers, think of SPD as your own pet peeves but multiplied by 10. If nails on a chalk board makes the hair on the back your neck rise, that is that same for an SPD child but its something as simple as a dog bark, or touching sandpaper, playing in beans or rice, what seems simple to us may be really hard for them. The good news is, it can be addressed and it can be overcome. The sooner its recognized the more likely the child will outgrow many of the sensory issues. But as adults, we all have our own sensory issues, some of us are simply routine people, we have to have a routine to get through the day-to-day and these children are no different.

One thing I will add, is that just about a year ago, when my daughter was 3, I was visiting with a friend who is a Speech Therapist and is familiar with SPD. She told me something that no other therapist or doctor told us. SPD can often times be a symptom that something else is going on with the child. No one told us this. But since then, we have had an MRI done as my daughter ended up having two more possible febrile seizures that year. She was diagnosed with a mild form of a brain disorder where small areas of her frontal lobe did not develop in utero, and recently her seizures have been upgraded to epilepsy. My advice to other parents of SPD children is press your doctors for more tests, get the MRI, even for no other reason but peace of mind. Brain and spinal problems often go undetected even with signals like SPD so make sure you are getting accurate diagnosis for your child.

Once you had the SPD diagnosis, what symptoms could you see in hindsight that she was exhibiting?
consistent delays in achieving major milestones like rolling over, sitting up, crawling, walking, climbing.
Strong gag reflex and constant drooling (after age 2)
Light sleeper, waking to every sound (running bathroom fan and getting a sound machine for her room helped here)
Transitions resulted in screaming and crying, almost seems uncontrolled (transition toys help but patience helps more)

MMT: How old was your child at the time of diagnosis?
Jeni: 18 months

MMT: How have you adapted your home and personal lives to her SPD needs?

Jeni: For the most part we did not adapt our home other than things like running the bathroom fan at night or putting a sound machine in her room to drown out inconsistent noises or outside noises. We simply worked with her to tackle challenges in the home by day such as learning to tackle those stairs, easing her into the shower little by little, letting her taste lemon juice in small doses. My belief is children are resilient and adaptable, their learning curve is just different, so instead of changing their environment, help them to conquer it. Use good judgement so you aren’t over stimulating them with harsh challenges but easing them into new things every day little by little. But again as a disclaimer, no two cases are alike so what has worked for us may not work for the next child based on the nature of their SPD.

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I’m so grateful to Jenni for sharing her experience, and I have the second the emotion that SPD can look different, case by case. Not all of Jenni’s experiences mirror ours (for example Jojo was actually always ahead of the curve on physical milestones, but did reject baby food and was a light sleeper).

Jeni recommends The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder, Revised Edition as a resource for parents looking for answers and support, as well as a magazine called SI Focus.