Most children are born with a natural curiosity about the world and the people in it.
For some children, like my daughter Jaimie, the world is a frightening place bombarding them with sensory information they cannot avoid or process. These children live with sensory processing disorder (SPD). SPD, also known as sensory integration dysfunction (SID), is a neurological disorder that impedes on the brain’s ability to properly process sensory information.
For most of us, sensory information isn’t something we even think about. We have a filtering ability to block irritating noises, smells or the itchy tags in our shirts. For children with SPD, however, the inability to filter such things interferes with concentration, attention and learning, leaving the children to feel overwhelmed and confused as to why they can’t tackle the simplest of tasks.
I knew Jaimie struggled with something as early as 3 months old. But people around me thought my concerns stemmed from me being a nervous, first-time mother, and wrote off Jaimie’s behavior as being “just spirited.” People didn’t listen to my concerns until things got so bad that Jaimie refused to eat anything, screamed most of the day with her hands over her ears or eyes and scratched at her skin, eyes and ears. Eventually, I realized that these were the ways Jaimie desperately tried to tell me something was wrong.
The occupational therapist (OT) who first diagnosed Jaimie with SPD once said to me, “If you know in your gut something is wrong…when that gut nags at you and won’t let go…listen to it. It’s usually right.” The advice is easier than it sounds, though.
SPD, like other neurological disorders, is considered an invisible problem because no obvious facial features or other physical impairments can be seen. The only clue that something is amiss is the child’s overt behavior.
My husband Steve once wanted to set up a video camera to record Jaimie’s reactions to situations, objects and people. Even simple tasks like changing our daughter’s diaper could take 15 minutes or more because our touch or movement, like leaning Jaimie backward, threw her into a rage. Just spirited? No way. But how do parents get the professionals to listen and understand that a problem in fact exists?
Keep a detailed journal. Many programs that assess children for neurological and/or behavioral problems require a physician’s referral. This can be a frustrating situation when the person you need to believe you is telling you that your child is just spirited. Therefore, the more detailed the information you can give the pediatrician, the better. We wrote journal entries about what triggered Jaimie’s tantrums, how long they’d last and what Jaimie resorted to in order to calm herself. By the time Jaimie was 2, my husband and I presented our concerns multiple times to her pediatrician before he gave us a referral. We didn’t give up until the doctor listened.
Go through the steps until you get to the top. Jaimie underwent at-home therapy with a loving occupational therapist for a year. From there, we had an assessment done (called an “Assessment Triage”) to get Jaimie into a community program. Jaimie then saw a play therapy psychologist for another year until we finally had a group meeting with the psychiatrist heading our daughter’s case.
The person who heads the cases can help you cut through the red tape and make things happen as fast as possible. This person also ensures that your child is getting the treatment best suited to him or her, such as holistic, medicinal or whatever care works best.
Be an advocate. One of the best pieces of advice I’ve gotten about Jaimie’s treatment is, “Listen to the professionals, soak in what pertains to Jaimie, then throw out the rest.” Essentially what this means is not to be bullied into a certain sort of treatment or therapy if you believe it wouldn’t help your child thrive.
We were told to put Jaimie on anti-depressants, anti-anxiety medication and a sleep aid— when she was only 3 years old. We refused, hoping there were more holistic approaches for toddlers. There were.
Don’t be afraid to ask questions, address concerns and express what likely will or won’t work for your child. You know your child better than anyone else, and your child knows how the treatments and therapies are working better than anyone. Together you can come up with what works best.
Hang in there, be strong and don’t give up. The journey to the truth can be a long and emotional one, but it’s worth it if you find the answers you need. Jaimie gets a bit stronger each day, thanks to having the right tools to help her cope. If a child isn’t thriving in his or her environment or relating to the people in it, the child needs help. Follow that gut feeling no matter what you’re told. I’m glad I did.
It can be difficult to diagnose SPD in children, especially toddlers and preschoolers. A spirited child has similarities to one who has a sensory processing disorder: Both are easily overstimulated, both have difficulty calming down and both have sudden tantrums that seem to come from nowhere.
Where these children differ is how each interacts with his or her environments and with people.
Spirited children are constantly curious. They tinker with everything, they want to know how things work, they like to be busy and have fun, and they aren’t afraid of new situations or experiences— they thrive on them. The opposite is true for a child with a sensory processing disorder.
Watch for any of the following characteristics:
- Showing over-sensitivity to environmental stimuli. Children with SPDs have over-the-top reactions to sensory stimuli, especially when the stimulus is slight or hardly noticeable to anyone else. Gagging to smells, covering the ears to sounds, covering the eyes to light or screaming at the slightest touch are all warning signs.
- Displaying under-sensitivity to environmental stimuli. If a child doesn’t seem to notice or react to any sort of stimuli, he or she may have a sensory processing disorder.
- Being sticklers for routine. Children with SPDs tend to hold on tight to what’s comfortable and react adversely if routine changes. Such children also tend to resist anything new, including food, play, toys or people.
- Avoiding social situations. Children with SPDs generally reject situations where they’d be exposed to too much stimuli. If they feel they can’t control what’s happening around them or things aren’t familiar, it causes discomfort that children with SPDs can’t handle.
- Having tantrums. More common in very young children whose verbal skills aren’t as developed as older children, children with SPDs aren’t able to communicate what is troubling them, causing them to have inconsolable tantrums. Whereas most toddlers have short sporadic tantrums, children with SPDs have longer, more frequent and much more intense fits.
Jaimie displayed all of these traits, except under-sensitivity. Use this information as a guide, then check out the following sites for additional information.