TRUST YOUR GUT: One mother’s experience with Sensory Integration Dysfunction

This was written by Victoria W. about her son when he was young. As she shared her story with me, I asked if I could post her article on my blog. She graciously agreed to share her experience. Learning to trust your gut when it comes to parenting decisions is difficult to do, but oh so very important.

By Victoria W.

Doctors dismiss it, family and friends question it and wonder about overindulgence, the New York Times debates it and parents, like me, who know instinctively that something is wrong, have difficulty finding help. It’s painful to be treated as an ignorant first-time parent when you know with certainty that something is wrong with your child. Our firstborn, Max, came out screaming and, despite all our efforts, he was seldom consoled. I don’t mean he was a little colicky. I’m talking about screaming and restlessness most hours of every single day.

Early on, we discovered that Max had reflux, not the kind that caused him to lose all his food, rather the kind where the food stayed down but the acid burned him as it traveled back up his esophagus. At one month of age, he was put on Zantac, after trips to the pediatrician’s office so frequent that we knew all the doctors and nurses in a sizable group practice. He was better on the medicine, yet not enough.

Max, I remarked to one doctor, seemed like “an exposed nerve.” If my husband or I sneezed, laughed or talked too loudly, he would erupt into hysterical tears. The coffee grinder would set him off even when he was in another room. A bright light would make him flinch. In general, every environmental event was so amplified as to cause him pain, both physical and psychological.

He wanted always to be held, but many times, even our arms could not keep him from crying. Also, in spite of wanting to be carried, he often reacted with extreme discomfort at being touched. We sometimes hired a sitter to hold him on her lap and not move or make any noise so he might get a little sleep and we could get a break! My sister-in-law once remarked how she had never seen parents try so many things to console their child with such little success. We attributed this heightened sensitivity to his delicate digestive system.

Developmentally, he reached milestones slightly late, but not alarmingly so. Luckily, I attended a baby group where my leader told me early on that the reflux would probably cause my son to be somewhat delayed. Fortunately, that took the pressure off me to measure him against his peers. Max crawled, walked, and ran, but he did these things awkwardly. He was profoundly right dominant. His fists were always tightly clenched well beyond the age of one. There continued to be numerous questions about why our son’s anguish did not subside.

Pediatricians dismissed our concerns as overreactions. “What did it matter if your son takes one lopsided step if the next ten are straight?” “A lot of kids don’t like to be touched.” “Late speech shouldn’t worry anyone…we’ve all heard that Einstein didn’t talk until he was three.” Our friends and family had their own opinions; they felt we were worrying needlessly. “Just let him tough it out, relax,” they told us. “All kids have issues.  He’ll grow out of it.”  Something, however, just didn’t feel right to us. We could tell that our sweet, darling boy was unbearably uncomfortable in his skin.

We tried everything to help him, from cranial sacral therapy, calming homeopathic remedies, to diet changes. We tried holding him for hours. We tried running the vacuum cleaner, to provide white noise and we tried complete silence.

In retrospect, we were extraordinarily lucky. The mother’s support group we found saved us. The leader and group members were willing to look for answers when the traditional medical community had little interest. Week after week, I’d spend the group time bouncing Max in my arms trying to keep him from crying and asking more and more questions. The leader finally suggested I get Max evaluated by The  Regional Center, an organization that was available to residents of our state. The Regional Center provides services for free to children under three whom they consider “at risk” of developing delays or other problems later in life.

Five different center specialists assessed our son when he was seventeen months old. They all concluded that he had “Sensory Integration Dysfunction.” It was, they explained, as if his brain’s nervous system’s hard wiring was off. This dysfunction can result in children who are either hypo- or hyper-sensitive. Max was definitely the latter. I remember being threatened by, and resistant to, their findings, but also being tremendously relieved. We weren’t crazy after all! We weren’t overindulgent, uptight, first-time parents.

Witnessing these evaluations alone was remarkable. In one session with an occupational therapist, one of the tests she used to determine Max’s sensitivity actually helped him. She lightly brushed his hands with plastic bristles. He flinched and cried. This helped her establish that he was “tactily defensive.”  For us, it was now feasible to wash his hands! He literally could not tolerate having his hands washed prior to this part of the evaluation, which I later learned is a therapeutic technique. I felt as though I were watching Max’s small brain make the connections that had thus far eluded him.

Once we had a diagnosis, Max began a regimen of various therapies. He had private weekly sessions with both a speech therapist and an occupational therapist (“OT”). I now have the utmost respect and appreciation for these generous, loving individuals who help people function at their best in their occupation of choice. In the case of children, their “occupation” is play. Twice a week, Max also attended a three hour sensory session provided by occupational therapists, physical therapists and speech therapists.

Max’s peer group was diverse. There were kids with Down’s syndrome, autism, some who were delayed in other ways, but all of whom shared varying degrees of sensory discomfort. I remember reading in Carol Stock Kranowitz’s excellent book, “The Out of Sync Child, Recognizing and Coping with Sensory Integration Dysfunction,” how one parent of a child with Sensory Integration Dysfunction observed how many children with more visible issues did better on the initial evaluation tests than their “normal looking” child. I made that observation for myself watching Max interact with the other kids. One day, a younger girl with Down’s syndrome easily stacked some blocks and happily tolerated being spun whereas my son could do neither.

Thanks to all the people who listened and provided therapies, Max is doing quite well. He was re-evaluated at the age of three. He had improved exponentially. He had gone from being only able to say Mama to being extremely and precociously verbal. His gait and balance had improved. He was able to tolerate a large array of sensory experiences, hands immersed in shaving cream, being touched and cuddled to name a few. Several evaluators felt that he would benefit from more OT to help him in the sensory arena. We decided that a traditional pre-school would provide adequate challenge for him. A one-on-one session with an OT would not challenge him the way navigating in a crowded sandbox with unpredictable preschoolers would.  We decided that if issues flared up and we felt that Max would benefit from more OT, we would not hesitate to sign him up for more therapy at that time. I have phoned his OT in many exasperated moments for advice when intermittent flare ups occur.

The sensory integration issues haven’t completely disappeared. Max, who is tall for his age, was almost four when he moved out of his crib. He once remarked that if he slept in his “big boy” bed, then he “would come out,” as if that notion terrified him. After much discussion, we realized that he longed to have the sensation of containment from the bars of his crib. The same thing dawned on us when it came to his “pooping in the potty.” At four and a half, much to the irritation of his parents, he still didn’t want to do it; he, instead, preferred the containment of a pull-up.

Now, in his second year of pre-school, our son is thriving. Again, we were fortunate to find a wonderful, loving and supportive school.  People are usually surprised to learn of Max’s earlier difficulties, and yet not. When you observe him, you can often spot the remnants of his discomfort. Much of his ill ease is still there. He still flinches and covers his ears when we grind our coffee, he is very slow to warm in groups, he may cry if touched in a way that surprises him, and he avoids walking barefoot in the sand or on grass. It’s still there and yet, we are confident that he is going to successfully navigate this unpredictable world that is filled, for him, with more than the usual challenges.

We, as his parents, now understand what to look out for and it helps us find a solution that will work for Max. We have learned to have great patience. For our son, pushing him to do things does not help. We are also teaching Max to be his own advocate. He now speaks up if his environment is too loud or too crowded. He knows to move away and does so without shame. He knows that he will do better if he arrives early to school or to a birthday party before it is in full swing. We also tell him that his sensitivity has a positive side. He hears and sees things that others sometimes miss.

Several of Max’s therapists suggested his problems might have been much more complex had he not received care at his young age. From our perspective, early detection and intervention have made a critical difference in our lives and the life of our son.

My advice to any parent who feels that something is not quite right with his or her child is to trust your instincts and get help. There are many organizations able to help and neither parent nor child need suffer alone. We never doubted that Max had issues even though many people tried to convince us otherwise. I suppose that you could argue that Max got better just with the passing of time and maturing. But my husband and I witnessed Max transform before our eyes precisely because of his therapy. Max also has a younger sibling now who does not share any of these sensitivities. Sure, she doesn’t like getting her hair washed, but there is a distinct difference between an aversion and a reaction that causes hysteria. To those who continue to question the veracity of Sensory Integration Dysfunction, please listen to this one mother’s plea and open your hearts and minds to those kids who might just be a little different. With a little help and understanding these children, like mine, will be just fine.

Some available resources:

• Carol Stock Kranowitz books:  “The Out-of-Sync Child, Recognizing and Coping with Sensory Integration Dysfunction” and “The Out-of-Sync Child has Fun.”   www.out-of-sync-child.com
• Developmental Delay Resources, 301-652-2263, www.devdelay.org
  • Sensory Resources, 888-357-5867, www.sensoryresources.com