As a parent of a nonverbal child with autism, our journey has been a tapestry woven with both challenges and triumphs. One of the most significant threads in this tapestry has been understanding sensory processing disorder (SPD) and its profound impact on my son. SPD is often found in children on the autism spectrum and manifests in various sensitivities and reactions to sensory stimuli. By sharing our experiences, I hope not only to advocate for my son but also to raise awareness and support others who are facing similar challenges.

Sensory processing disorder refers to the brain’s difficulty in interpreting and responding to sensory information. This can include sensitivities to light, sound, touch, taste, and smell. For children like my son, everyday environments can become overwhelming and stressful, leading to withdrawal or, when multiple irritations stack up, meltdowns.

Simple activities, such as grocery shopping or attending social gatherings, can be daunting for my son. Bright lights and loud noises in stores often lead to sensory overload. I vividly remember a trip to a crowded supermarket; the bright fluorescents seemed to pulse, and the announcements echoed. My son quickly became agitated, covering his ears, his stimming became louder, and he was tensing up. In that moment, I realized that what might seem like a routine errand to others was an overwhelming experience for him.

At home, certain textures can trigger strong reactions. For instance, he struggles with shirts that feel staticky against his skin, finding certain fabrics unbearable. This has taught me the importance of being mindful of his clothing choices and providing comfortable alternatives. Food can also be particularly challenging; he tends to avoid trying new things and prefers to stick to familiar favorites.

Through trial and error, we’ve developed strategies to help him navigate these sensory challenges. Here are some approaches that have worked for us:

1. Creating a Sensory Retreat: We’ve designated his room as a “sensory retreat.” It’s equipped with soft pillows, weighted blankets, dim lights, a soft rug, a rocking chair, and calming toys. When he feels overwhelmed, he knows he can retreat to this safe space to decompress.
2. Establishing Routine: A consistent daily routine has helped my son feel more secure. Knowing what to expect reduces anxiety and prepares him for sensory-rich environments.
3. Visual Supports: Visual schedules, social stories, and his communication device have been invaluable in preparing him for new experiences. By explaining what he might encounter, we can discuss potential challenges and strategies in advance.
4. Stimming: I’ve witnessed how stimming helps my son regulate his emotions and navigate challenging situations. For example, during a busy family gathering, the noise and commotion can quickly become overwhelming. In those moments, I see him begin to pace or hum softly to himself, “eee”. This rhythmic movement offers him a sense of grounding, helping him find calm amidst the chaos. Stimming, or self-stimulatory behavior, encompasses a wide range of actions, such as hand-flapping, rocking, spinning, or making sounds. For many children with autism, these behaviors serve as a way to self-soothe, manage sensory overload, or simply express joy. It’s a natural response to their unique ways of interacting with the world around them.

As we navigate the complexities of SPD together, I’ve learned to embrace my son’s unique perspective. His heightened awareness of sensory details often leads to moments of profound wonder. He notices the rustle of leaves, the patterns of sunlight through trees, he watches every ripple and wave in the water, and the intricate details of everyday life that many of us overlook. This sensitivity, while challenging, enriches our shared experiences and deepens our connection.

Connecting with other parents of children with autism has been incredibly beneficial. Sharing stories and strategies creates a sense of community and reassurance. Support groups, both in-person and online, serve as lifelines for parents seeking understanding and advice. If you’re on a similar journey, know that you’re not alone. Together, we can navigate the complexities of sensory processing and celebrate the unique perspectives our children bring to the world. Let’s continue to learn, share, and support one another in this remarkable journey of parenthood.

Living with a son who has autism and sensory processing disorder has reshaped my understanding of the world. While the challenges of navigating what works and what doesn’t can be overwhelming, they are accompanied by moments of profound beauty and connection. By focusing on understanding his sensory needs and advocating for him, I aim to create a nurturing environment where he can thrive.

by Beth Ayers, Family Support Lead

June 11, 2024

I did not expect to be raising a child with a disability. In fact, I’m pretty sure no parent does. When I dreamed of having children, I imagined them healthy and living life like their peers. Sure, there was bound to be misbehavior and bumps along the way, but not a disability. Certainly not one that would shatter my hopes and dreams and force me to change my expectations. Adapting to being a parent or caregiver of a child with a disability can be hard.

Dr. Nancy Miller, a psychotherapist and social worker, developed the Stages of Adaption from her work with parents of children with disabilities. Understanding the stages and where we are in them can help us navigate our new world and not feel quite so alone in it. The 4 Stages of Adaptation are: Survival, Searching, Settled In, and Separating.

Stage 1: Survival

Common emotions parents and caregivers experience in this stage are denial, anxiety, and fear. We are learning the rules of the game and finding out who’s on our team. Our social groups often change, and we lose friends simply by being on a different life path. In this stage, we cycle through a pattern of plan, fix, reassess, plan, fix, reassess, etc. Attempting to fix our emotions, we believe when we find the answer, everything will get better. For me, planning is my go-to for dealing with stress. As long as I am planning, there is hope for everything to be okay and I can avoid dealing with my feelings. Denial sounds like “My life won’t have to change. I won’t have to adjust my expectations.” And so, we don’t change what we do or how we do it and continue in denial. Anxiety asks “Can I handle it? What’s coming my way next?” Anxiety, in the right dose, can be helpful. If someone has no anxiety, they usually have no motivation. But when anxiety gets too high, it turns into despair and causes paralysis. An anxiety level that allows us to be highly motivated is the sweet spot. This is where we can dream again and engage in action. Fear triggers the fight in us, always looking for who or what we will have to fight for our child’s best?

Stage 2: Searching

Emotions include guilt, shame, depression, and anger. I find myself repeating, “This isn’t the way things were supposed to be.” Searching can be inward where we question what our child’s disability says about us and outward where we question what it says about our child. Guilt is a normal feeling that causes us to ask ourselves what did we do wrong, did we miss something, what can we do now. It’s when we hang onto the guilt and carry it around that it weighs us down. When I am weighed down by guilt, I say things like “If I was a good mom, I would….” And “I should be able to do…. like all the other moms.” Mom guilt is real! Shame is a form of self-loathing. Shame says there is something wrong with me to make my child like this. Dads tend to experience shame more. Brene Brown writes, “Parenting is a shame and judgement minefield.” Shame tends to come from fear of judgement or self-judgement. Depression can happen in this stage because reality is hitting us. We see the long road we and our child have in front of us and we’re not sure we can do it and sometimes we’re not sure if we want to. Anger is depicted as blowing up, raging, or throwing things, but more often it looks like blame. We control the outbursts but focus our anger on who we think is to blame and direct our anger there. When we see our kids having value and meaning as they are, our anger and comparison decrease because we aren’t trying to measure up to anyone or anything anymore.

Stage 3: Settled In

This is the stage we want to get to. Emotions experienced in this stage are hope and acceptance. We are more balanced in this stage. We might still be looking for an answer, but our hope does not depend on it. We are okay either way. In our families, hope looks like finding meaning in the life our children are living and finding meaning in our own life. Hope is a result of struggle. We have to do hard things in order to believe that we can do hard things. Struggles produce lessons learned useful for the continuing journey we are on. Acceptance is understanding and being okay with where we are. Through encouragement and building community around us and pointing each other towards possibilities, we are able to move toward acceptance. The challenger to acceptance is change- change in our season of life, change in diagnosis, change in progress from a setback. Here we are threatened again in survival mode and searching for answers. But when we have done it a few times, we can move more quickly through the stages, coming back to acceptance.

Stage 4: Separating

This stage is about finding the appropriate amount of independence. It is important as we move toward the transition of our children becoming adults. We need to encourage our children from a young age to have a picture of what the future might look like for them. Struggling to separate ourselves from our child sounds like “We have an appointment.” Or “We have a procedure next week.” Or “We have homework tonight.” It is easy to connect our identity to our child and their disability. It is important to remember that we have other roles such as spouse or significant other, parent to another child, friend, and unique individual. All of these roles in our life demand our attention and energy if we are to stay healthy.

Learning the Stages of Adaptation helps me see where I am and where I’ve been. It shows me the progress our family has made. It gives me a sense of belonging knowing that others have had these experiences too. I go easier on myself when I find myself back at survival, again. I am encouraged to keep dreaming. It helps me adjust my expectation of what a “good” life is. Instead of always trying to change things, I appreciate what I can and focus on what I have. And I am thankful for that.

By Kayla Myers, Family Peer Supporter

March 11, 2024

I had a revelation recently and am still unsure how to correct this coping mechanism I acquired on my journey through life. I guess at this point acknowledging and identifying this within myself is currently the stage I am in. So, I thought this would be a good way to reflect through writing and see if any more revelations transpire my growth. “Carpe Diem” is a Latin term meaning “Seize the day”. This can inspire the idea of living in the moment or for today, so we aren’t wasting what little time we have on this earth worrying about what has already happened or what is to come.

I was recently re-exposed to the idea of perfectionism. Identifying as someone who struggled with perfectionism didn’t ring true for me when I heard this idea brought up long ago. To me perfectionism meant you kept your spaces tidy, and your hair and makeup were always done, you were an overachiever, and things had to be perfect in your mind until you could be proud of yourself or the work you accomplished. I do not need things to be perfect to live a life that feels good to me. But when we dove into the layers of perfectionism, something hit me like a ton of bricks. I realized that I had this invisible report card inside of me where I was being graded and I was the one grading myself. I have zero idea of what I am being graded on or my expectations for myself, but it's there. How can I live up to this potential of a bogus scoring system that I allowed to control my self-worth and not offer myself grace when I don’t succeed? I feel like I owe myself an apology for setting such unfair terms to measure my success and when I fail, my worth always crumbles in my hands.

I have always been a kind soul. The one that roots for the underdog and wants to believe that we are all good underneath the layers of our lives and journeys that either left us better or battered. We are all trying to do the best job we know how to do with the tools we have in our toolkits. I offer grace and understanding to everyone around me and keep in mind that I have zero idea about the battles they are fighting every day. All these things come so naturally to me, but I have a hard time offering these same ideas to myself. I am hard on myself. I am my own worst enemy sometimes. Trying to live up to an unrealistic inhuman standard I set for myself long ago. Hey, I should start now, I am proud of myself for being able to identify the pattern I am in and give it life by acknowledging it's there and breathing into it to see what I need so I can sink deeper into my authentic self. I am also proud of myself because I recognize it's time to start offering myself the same grace and compassion that I offer others and to acknowledge I am a human and doing my best every day.

Carpe Diem- I pledge to myself to keep this mantra in the forefront of my mind. When I feel uneasy about what is happening around me, in my body, or mind, I am going to remind myself that the only thing I am in control of is my response to what is uncomfortable. I will let my invisible report card take a rest so I am not keeping track of all my faults, and I will offer myself the grace to learn and do differently next time. I am a perfectly capable but flawed human being. My expectation of me is to live a life that feels good, not one that looks perfect to everyone else.

by Erin Faulkner, Family Peer Supporter

August 15, 2023

For this month’s topic, “Parenting in Recovery”, I once again had to turn to my internet friend, Google.  There are many kinds of recovery.  Recovery from substance abuse or other addictions.  Recovery from acute mental health events.  Recovery from physical injuries.  What does recovery mean for me?  Google defines recovery as “a return to a normal state of health, mind, or strength” and “the action or process of regaining possession or control of something stolen or lost.”  That last word, lost, is what I connected with.  For many parents of children with special health care needs or behavioral health challenges, the expectation of what we envisioned for our lives and for our children is gone or changed, in a sense – lost. 

My story is a little different than many families as I knew that the probability of my daughter have Stickler Syndrome was 50% because I have it, too.  So more than “lost," I often feel guilt.  Should I have done this, brought a child into this world that would have some suffering? 

Last week, I participated in a training by Brad Thompson, a clinical counselor, with years of experience in family peer support.  I learned about Stages of Adapting:  Survival, Searching, Settled In, and Separating.  These stages can be a framework for our journey to recovery as parents of children with special needs. 

In Survival, we may experience denial, anxiety or fear.  This is the part where our expectations and reality have gone in different directions.  These feelings stem from wondering if we are able to handle what has been handed to us and whether we have it in us to fight.  In addition to my daughter’s connective tissue disorder, she was also diagnosed at 5 years old with an Inflammatory Myofibroblastic Tumor on her bladder.  I can honestly say this was the scariest time of my life.  We didn’t know if she had cancer for almost a week.  For this, I was in “survival mode”.  I was scared for her, anxious about work and money.  A lot of emotions and thoughts went through me, many that those there to support me could not understand.  This anxiety pops up whenever she has some kind of an illness or physical problem. Most people might blow it off and not be worried, but her “UTI” turned out to be so much more that it affects me to this day.

We often Search for answers.  Is it my fault, the doctor’s, God’s?  What will other people think?  Why me?  This stage includes feeling such as guilt, shame, depression, anger.  This is the stage that will pop up from time to time, but less often as the years go by.  Usually, it pops up because of something she is experiencing:  pain, sadness, questioning.  Oftentimes, it is her that tells me not to feel guilty or sad. 

We finally move to acceptance and hope.  We have “Settled In” to our lives with new expectations and realities.  For me this is when action happens.  This is what I need to do to make sure that she gets everything she needs and can perform to her potential.  But acceptance is more than just about accepting what your child’s future is.  It is also accepting what your future will be.  A few months ago, in my blog, I talked about 3 questions I had learned from a Ted Talk.  I bring those up frequently with people because I think they can be arranged and fit most any situation. 

• What does great look like?
  • What is your new expectation? Be realistic but have hope.
• What do I know for sure?
  • Avoid travelling down the rabbit hole of “what ifs” or looking at the glass as half empty rather than just needing to be topped off
• What can I do to help?
  • What can you do to help your child in school, home, etc?
  • What can you do to take care of yourself? Don’t forget about you!

In doing this, we will then move into Separating.  You and your child are not one person.  You can’t care for yourself if you are only caring for your child.  This is where you become independent of one another.  My daughter is now 21 and in college.  I keep trying to hold on to her for as long and as much as possible.  She is very clearly telling me, “I love you mom, but back off!”  This has been happening for years, but now she is physically gone, so it is very real.  I have had to really discover who I am without her.  This is not special to parents of children with special needs, but I do believe that it is different.

As a parent of a child with special health care needs, I continue to process through these stages.  You may not reach the last stage and “graduate” and move on.  You slide back to a previous stage because something else has happened in their life or your life.  That is okay!  Process those feelings and keep moving forward.