I’m so Glad You’re Here, An Introduction

Julie Johnson
January 22nd, 2026

When I started to recognize the signs of autism spectrum in my own child, I never viewed it as something that was going to destroy our family or ruin our lives. I had been working in the field of special education since I graduated college in 2007 and adored the students and clients with autism I had worked with over the years. Children with autism are most often extraordinary, remarkable individuals who bring great joy and talent to the world. From my perspective, just about all children will have challenges, whether in early development or later in adolescence or young adulthood, and I believe that anyone who makes the decision to have children should be aware of this reality. My husband and I have extreme optimism that my son will be able to lead a full and productive life because we know that autistic people contribute immensely to our society.

Flash forward a few years and I will also say this: As a mother of both an autistic child and a neurotypical child, raising an autistic child does not compare to raising a neurotypical child. Raising all children is difficult, especially without sufficient supports and resources. But raising children with disabilities is complicated by additional stressors that may not be obvious at first glance. An outsider may not know about the endless appointments and therapies (that may or may not be helping), constant battles to even get through simple parts of the day, sleepless nights well beyond the newborn years and behavioral issues that are bizarre, disturbing and sometimes frightening. For me, far above the behavioral struggles and social isolation, the constant worry about my child’s health and safety can, at times, be paralyzing.

Autism is a spectrum disorder and as the saying goes- If you’ve met one person with autism you’ve met one person with autism. The needs of autistic individuals vary hugely. I mention this to make clear that there are families of children with profound autism (also known as level 3 autism) who struggle with challenges that we cannot fully understand or relate to in our family. In addition, there are so many different diagnoses out there from ADHD to rare genetic disorders which come with their own unique difficulties, many of which involve medical complexities far beyond what we have faced with our son. My son does have an eating disorder called ARFID (Avoidant/Restrictive Food Intake Disorder), and this diagnosis, along with subsequent gastrointestinal issues, is what causes us more stress on a day-to-day basis than his autism spectrum disorder. While our journey involves autism and ARFID, I hope that all special needs caregivers can find a place here.

I am incredibly fortunate to have a robust support system with an actively involved spouse who works remotely and the opportunity to mostly stay at home with my children. We have family and friends nearby and live in a sweet town with a strong public school district. Due to my background in the world of special education, I was equipped to quickly spring to action in terms of early intervention and subsequently the IEP process. I spent years and years doing parenting training, conducting assessments, training other professionals on autism and autism interventions and writing and implementing behavior intervention plans for kids like my son.

And still, it is so incredibly hard for me to parent an autistic child with medical complexities. I cannot imagine how parents are out there doing this with less education and far less support. Over the past several years I have worked for and connected with A-to-Z Abilities which, along with an inclusive preschool, has a small sensory gym in South Berwick. All children love A-to-Z and anyone who is familiar with this organization knows what a special community the owner, Ms. Taylar, has created through her relentless advocacy and unparalleled work ethic. During my time working at the sensory gym and helping to run a support group for caregivers of special needs children, I have met so many families who are struggling with aspects of parenting. Their stories are often devastating, such as schools and daycares kicking children out or offering insufficient support, behavioral challenges in the home that are destructive and dangerous, spouses being on different pages about children’s diagnoses and the immense financial strain of raising special needs children-to name just a few.

In our free online forum, which you can access on the homepage of this website, I hope that we can all engage in conversation about raising children with disabilities and share resources that have been beneficial. One of the only ways I have gotten direction on treatment for my son’s specific eating disorder is through online conversations, since it is a relatively rare condition (or at least relatively unacknowledged). My hope is that in a world where everyone is incredibly busy and it may be too difficult to make in-person support groups work, we can use the internet for connection with other caregivers who can offer us guidance, recommendations and at the very least, support. I understand that many of you may want to join anonymously to protect your children’s privacy, and that is totally understandable. I only ask that everyone who does decide to join our online forum is respectful and open to dialogue on perspectives that may differ from one’s own.

I know firsthand that often what parents, especially parents of special needs children, really need is a break. My long-term goal is to help with that, somehow. In the meantime, I hope to use this space as a reminder that you, as a parent, are not alone.

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