Raising a Special Needs Child: My Story

I have two boys, so I understand the challenges kids present to keeping your home organized, your time managed, and your life together.

In addition, one of my boys has Autism, so I struggle with the tangible and intangible challenges that come with it (tons of paperwork, keeping track of appointments, grief over lots of personal things, having to think of time management differently, for example).

For a long time, I’ve wanted to write a few posts about specifically organizing for families with special needs kids. I wanted to tell you about organizing the piles of paperwork, creating a sensory room at home, how to use picture schedules and visual cues to help your kid organize his or her day. But every time I sat down to write, I felt something was missing. Then I realized that I first I needed to tell my story. You need to know where I am coming from and how I can relate to this special situation. I want you to know that I understand these challenges because I have lived through them all myself.

Many people ask me why I do what I do or how I got into professional organizing. The easy answer is that I always loved organizing and I cleaned my room for fun as a child (these are both true). But the longer answer is a story I don’t usually tell, but it definitely is intertwined into why I do what I do. Behind the pretty closet pictures there is a deeper reason for why I do this, and why I love to help others. To me, it is not just organizing a bunch of stuff. I hope to give people peace of mind and allow them to focus their time on their kids, their spouses, their hobbies, or whatever brings them joy in life. I know firsthand that is harder when you are focused on raising a special needs child.

When I was pregnant with my son, we found out he had a heart defect. It was so serious that we flew across the country so I could undergo experimental (at the time) inutero heart surgery. The surgery had risks, and didn’t go as planned. I had PROM (Premature Rupture of Membranes), and ended up on bed rest in a Boston hospital for a month. It was truly a miracle that I did not deliver him that day and I healed enough to make it back home to Texas. Prayers answered, I delivered my son full term to a room full of doctors waiting to whisk him away for immediate heart surgery. 

Will’s surgery went well and after a few weeks in the NICU, he came home. He grew into a strong, healthy, happy toddler with only a few limitations because of his heart condition. We thought the worst was behind us. We had no idea the most difficult times were right around the corner.

As our son approached his second birthday, I noticed that he was unusually defiant and didn’t seem to “need” me or respond to me like I thought a two-year-old would. I just knew something was wrong, but no one could give me any answers. He seemed to be pushing away from me, but not in a developmentally appropriate way. He didn’t understand cause and effect or consequences. Discipline of any kind failed to have any effect. And he became aggressive. When his preschool told me they couldn’t handle him anymore, I had no idea what to do.

He was officially diagnosed with Autism, Sensory Processing Disorder, and ADHD at age 3.5, two weeks before the birth of our second son. As someone who often jokes that I wish I could put everything in my life in a box and label it, this was really throwing me for a loop. No one had any answers for me. There was no cure for the severe behavior I had to attempt to control every day. There was no relief in sight and there was no certainty about his future. I was overwhelmed with fear, confusion, guilt, loneliness, and sadness. I was drowning in books, articles from family, leads for treatments, doctor recommendations, picture charts all over our house, protocols from therapists, data charts to fill out. 

I had been a custom closet designer, but I wasn’t able to work with all that was going on at home. So I began putting my life back together by doing the only thing that gave me a sense of peace and control. I organized our home and lives to minimize frustration and overwhelm. The last thing I needed while dealing with a meltdown was to wonder where something I needed was or have a bunch of clutter that could be thrown or ruined. 

I would love to say my home became a well-oiled machine, but it did not. It took a lot of trial and error, effort, and it didn’t ever look perfect. Nothing was Instagram worthy! But I started with making my home more visually peaceful, and it helped me and my son feel more calm when there wasn’t so much stuff around. Also there was less to throw on the floor and break. 

By the time he was 3, I had an entire file cabinet full of paperwork. After he was diagnosed, the school district sent someone to our house who gave me a huge binder full of information and resources. It was overwhelming. I didn’t have the energy to read through it all, but I kept it knowing one day I might. The papers continued to pile up year after year, and the need to reference them became more important. I needed a system, so I created a binder. I’ll go into that more in a future post.

Over the years, my son’s challenges got bigger. We tried everything: special diets, supplements, OT, music therapy, play therapy, swimming, special schools, outpatient and inpatient hospitalizations, CBD, every pharmaceutical drug out there, sensory toys and crash pads, and a hundred different techniques and strategies for behavior improvement. Things only got worse. At age 10, he was verbally and physically aggressive to us, his teachers, his therapists, and complete strangers. We were always on edge, protecting everyone around us from his impulsive behavior.

After a difficult year of six hospitalizations in several different children’s psychiatric units, we knew we had to do something drastic. Will was a train that was going off the track a million miles an hour. I was out of energy and hope. In a weird way, I had been grieving the loss of the son I thought I would have for ten years. As he entered his tenth year and things got so bad, I finally felt like I grieved the loss of my son completely. I just did not know if he would have any kind of future, or how we would get through our lives. I also felt very much let down by the system and complete lack of help for families in our situation. I could not believe the way that the healthcare system treated (or didn’t treat) people with mental health issues. It was completely disheartening and infuriating at the same time.

We spent every day searching for something that would help, an answer, someone who knew how to help us. In 2018, we stumbled across two leads and found what would eventually, finally make a positive difference. First, we took Will to the inpatient autism unit at the Hospital for Special Care in New Britain, CT. It took a lot (too much to go into here) to get him there, but it was the first step in getting him the help he needed. I wish Texas had resources like this. Families shouldn’t have to travel across the country to get the right help for their children. 

Upon arrival, we met with the entire team, including psychiatrists from Yale, pediatricians, and therapists who specialize in kids on the spectrum with severe behaviors. These doctors knew what they were doing. To this day, I cannot say enough good things about the care we all received while our son was there. They even have an apartment on site where families can stay while their kids are hospitalized. When Will came home after about three weeks, things weren’t perfect, but they were definitely going in the right direction. I know medication can be a controversial topic, but for our son, the right medication was everything. 

In 2018, Will went to a residential school about three hours away from our home. Dropping him off there was the most difficult thing I have ever done. The combination of the right medication paired with an environment structured to help his behavior and social skills was exactly what he needed. The school not only focused on these important skills, but also used music, gardening, and caring for farm animals to help him practice empathy and responsibility. At our first visit a month into his time there, he was a different child. He was calmer, more able to control his body, and able to have a back and forth conversation with us. He was the best version of the Will we knew, the version we had seen glimpses of but that had become less present over the past few years. 

One of the things we loved most was watching him have friends and actually joke around / play with them for the first time in his life. Being surrounded by other boys his own age, he became part of a group with similar interests like football and Beyblades. As a parent of a kid with autism, you grieve the loss of your kid experiencing “regular” kid activities like going to birthday parties, field trips, or just joking around with friends. It has been so fun to watch and makes me so happy to see him experience that in life.

As of the end of 2020, Will has been home with us and doing great. Again, things are not perfect, but they are manageable. We still have a lot of challenges to face, but the physical aggression has not happened in over two years. For that, we are very grateful. We still need a lot of help, but it feels like there is a light at the end of the tunnel now and perhaps I can finally share what we’ve learned to help others. For a long time, it just seemed too hard, like I couldn’t see my own way out enough.

When things feel hopeless and you feel lost, keep going. Don’t give up because help could be around the corner. Or, you may realize that help is needed and you can play a part in changing things for the better.

This is the first part of a series of blog posts on getting organized while raising a special needs child. I hope that by telling my story first, you have gotten to know me a little better. I would love to connect with you about your own story, and offer any help or support I can. In the coming weeks, I’ll post about the strategies and tips I have learned in the trenches. In the meantime, please don’t hesitate to reach out if there is something specific you want to hear about!

Thanks for listening,

Allison