Tag Archives: adults with sensory sensitivity

Book Review By An OTR: Life, Disrupted; Getting Real About Chronic Illness in Your Twenties and Thirties

Although I work in pediatrics now, I spent the first 10 years of my career in adult ortho-neuro rehab. This means that I worked with many young adults facing issues from RA, MS, Lupus, spinal cord injuries, and more. They were just getting started with jobs, raising children, and making an adult life, but they had to deal with chronic disorders that impacted every part of daily living. And their needs were different in some ways from the older patients, who developed issues in their 60’s and 70’s or beyond. THEIR children were grown, their careers were often over, they had saved for retirement, etc.

Why am I writing a review on a book about ADULTS? First, many of the kids I treat will grow up to be adults with chronic issues. Their parents may or may not acknowledge this at 3 a.m., when they think about their child’s future with some fear in their hearts. Second, the PARENTS of some of my clients have their own issues. Sometimes the same ones, but sometimes lightning does strike twice, and the child has a different issue or issues from the parent’s own concerns. Either way, people want ideas and the feeling that they aren’t the only ones dealing with these issues.

This book is written by Laurie Edwards, who faces a chronic respiratory illness with a combination of determination and honesty that other adults with chronic illness will find refreshing. She isn’t shy about describing how it has affected her relationships or her ability to look at her future. But the book includes many other stories. Within the book you will meet a college student with Ehlers-Danlos syndrome, a young mother with another respiratory illness, and others with common and uncommon diagnoses.

Chronic disorders or illnesses can make immediate decisions harder, but they make plans for the future harder as well. I have felt strongly that teens with chronic illnesses need to plan their careers based on more than their talents. The realities of living in the US mean that having health insurance isn’t a given. Having the ability to take paid leave isn’t either. The “gig economy” isn’t kind to people with chronic disorders, and until our country decides to change this, it is important to choose education and training that will allow a person with a chronic illness to obtain good care. It really can be a “life or death” decision.

Ms. Edwards also takes on the decision to bear and/or raise children. Although there aren’t any specific strategies offered, she walks the reader through her process, and the decision-making of other people with chronic illnesses and conditions. One of the great gaps in care, IMHO, is care for mothers with chronic disorders. Raising children is hard work. Hard physical work, hard mental work, hard emotional work. Lots of joy, but lots, and lots, of work. Protecting their health when faced with their child’s needs often means that women sacrifice themselves and do not realize that there are options that reduce risk while being the great moms they want to be.

The lack of useful information from the therapy community is just astounding. We know a great deal that could make life easier, but there isn’t anything available to parents unless they are lucky enough to have generous health care coverage that provides them with therapy sessions. I have found YouTube videos on lifting and carrying kids when you have physical disabilities…none by therapists. We know so much about this topic, but parents seem to have to figure even this simple thing out for themselves. When understanding the principles and their own abilities could make them empowered to plan for each situation as it comes along.

For more information, read Career Planning for Teens with JRA, EDS, and Other Chronic Health Issues and Parents With Disabilities Need The Happiest Toddler on the Block Techniques . To read posts about children that have relevance for adults as well, read Why Joint Protection Solutions for Hypermobility Aren’t Your Granny’s Joint Protection Strategies and When Writing Hurts: The Hypermobile Hand .

Are YOU A Sensory Sensitive Parent?

If you fill out the Infant/Toddler Sensory Profile for your child and see yourself on the page too, don’t be too surprised. Actually, you might feel relieved, and even a bit excited. Because now you know that you aren’t “crazy” or “weird” or even “difficult”. If you have some sensory processing issues of your own, you can learn how to address them and improve your situation while you are helping your child learn to build her own sensory processing skills.

About one in four of the families I work with will admit that at least one parent has or had difficulties with sensory processing at one time. They rarely offer this information at the evaluation. Only with the reframing that occurs as I explain the process of therapy for sensory processing disorder for their child do I hear about how they or their partner only eats certain textures of food or cannot tolerate wearing clothes with long sleeves.

Now, that revelation is just the beginning of a conversation about themselves, because one or two issues with sensory experiences doesn’t indicate a sensory processing problem. Eventually I will hear about all the small and sundry things that this person avoids or alters in order to manage life as a functioning adult. Then it becomes clear to both of us: the story they told themselves about their preferences or personality quirks is likely to be based in sensory processing struggles, not psychology.

Older children and adults who have never had treatment are told (or tell themselves) that they are difficult, rigid, controlling, and too sensitive. This sounds very demeaning, but in fact it is often not intended to be hurtful. Behavior is often seen as only occurring for cognitive or emotional reasons. You have a feeling, and the reason is how you are thinking or feeling.  But behavior is now understood to have many drivers, and it isn’t always cognitive or emotional.

The truth is that sensory processing creates the impetus for many of our behaviors in childhood and beyond. Not seeing the effect of the body on behavior is a huge impediment to addressing issues effectively.  Yes, people who are overwhelmed with sensory input can and do try to control their environment and the people in it. It looks like they are rigid and difficult. But it is not the same as being manipulative and aggressive due to interpersonal or emotional events.

Avoiding touch or movement can also appear to be relational when it is a sensory-based issue. The relational problems begin when the person or other people interpret the behavior as indicating something else, such as shyness or social aversion. How you define yourself and how others define you is like choosing which road to travel. It means that you may not see all the reasons for behavior and all the possibilities for change.

People who have experienced trauma in childhood OR adulthood appear to be more likely to exhibit sensory processing issues.  There are some researchers that are very interested in sensory processing and trauma, such as Ulrich Lanius, but the treatment tends to be psychodynamic or EMDR, not the types of treatments that OTs use.  That is a shame, because we have a lot of helpful, effective, and affordable treatment strategies that work WITH psychotherapy, not against it.

Adults rarely receive effective treatment for long-standing sensory processing issues. Sometimes they have come up with their own solutions, such as doing yoga to receive deep pressure input. They may tell their friends that they can’t digest certain foods, when in fact just seeing some foods makes them nauseous. I am more than happy to work with parents and help them creatively explore solutions for themselves when it is indicated. I have even treated adults formally as an OT from time to time. When parents see themselves more clearly as they support their child, both parties can address sensory processing issues more effectively.