Just as my son wraps himself up inside a tunnel of weighted blankets, Autism crept in and wrapped itself around every fabric of his life leaving him trapped inside and overwhelmed. It seemed that every time he tried to overcome the impulses, aggression, and sensory overload, we would catch little glimpses of the boy we know is inside, only to watch this force called Autism overpower him once again.
He had been battling through these struggles common to Autism for a while. As a parent, it is the most heartbreaking thing to watch your child writhe on the floor in pain, want to hide inside a box so as to shut out the world, or to lash out in frustration because he so wants to be understood.
We were working intensively with his therapists, teachers, and doctors to help him through this extraordinarily tough time. We don’t know why this extreme behavior seemed to take over this last year. Some might say it’s the six year old boy hormones clashing with Autism. Other people might just say that Autism is not only a spectrum, but it is also a journey. This journey is full of ups and downs, trials and triumphs. Regardless of why, my child was struggling and we were going to do anything and everything we could think of to help him.
In the midst of this quest to help our son, May came, and then June. That’s the way it works. Before we knew it, we were thrown into summer.
I determined to be brave. I wanted both of my kids to have a wonderful summer. We were going to go walking, swimming, go to the park, and go get ice cream. I made a picture schedule. I made a social story for my son that told him about all the cool things we were going to do.
Without going into too much detail, it didn’t work. Oh, I could share a dozen stories of failed attempts. I could tell you about the morning we attempted to go for a walk through the neighborhood (me walking and my son being pushed in his stroller) and how I had to call someone for help as he had a meltdown that left us sprawled out on the gravel. I could tell you about the Sunday morning that we gathered up our courage and tried to go to church only to come home in tears with broken hearts. With each failed attempt, we retreated further and further into ourselves and our misunderstood reality. Before long, we were homebound.
The Autism journey can be a lonely one. I know this. I have felt this. I know of other families who have a child with special needs who have expressed feelings of isolation and loneliness. But nothing could have prepared my heart and mind for our homebound half-summer.
I wasn’t sad for me. I was brokenhearted that while other six year old little boys were camping, swimming, and biking this summer, my precious son was at home struggling. We continued to work hard with his doctors and therapists to bring him relief. But make no mistake, we were homebound. We did not go out to eat, out to swim, or out for a walk. We had family pick items up for us in town because we could not leave our son and we could not take him with us. We. Were. Home. I did my best to create a world of summer fun from my front door to the backyard gate. It was within the confines of this small area that we laughed, cried, snuggled, had meltdowns, and tried our very hardest to pull our son out of the overwhelming layers that Autism had seemed to wrap so tightly around him.
In the midst of all this, the Lord was gracious to teach me and speak to my heart. I want to take this opportunity to share a few things I learned during our homebound half-summer.
1. Not everyone understands, and that’s ok.
Throughout these six years we have watched friends come and go. Not everyone understands. This still stings a little, but not as much as it used to. There are a hand full, and I mean a tiny handful of people who are still walking through this journey with us. These are the friends who come sit on our living room floor and visit while Ezra drives his train on their leg like a train track. They don’t have to go out, go bowling, go to a movie, or require a fancy meal to spend time with us. These are the friends who understand that if they come to us, they will experience the very best version of our son in his own surroundings, creating an environment conducive for visiting. These are the friends who pray for us and with us. These are the friends who do not pass judgment and trust that we (a least sort-of) know what we are doing and that we always have our son’s best interest in mind.
During our homebound half-summer, I was reminded of how thankful I am for the few who understand. Those living room talks, checking-up-on-me texts, and phone calls helped to keep me going during a season of great loneliness. I am thankful for their love and friendship even through our darkest times.
I was also reminded during this time that not everyone understands. As the parent of a special needs child, I am learning to let go of the stares, comments, and cold shoulders. I am reminded that our crazy life does not fit into everyone else’s fast pace life. Not everyone understands, and that’s ok.
2. My first ministry is to my family, even if it means letting go of many other things.
This summer, I had to let go. I let go of writing, I let go of blogging, I let go of keeping up with very many people, and I let go of keeping a super orderly house. I let go of many things. These are all things that I love, but I love my son more. He is worth it. Whatever it was going to take to help him through this difficult time was exactly what I was going to do.
Keeping up with Ezra and his needs while balancing being a momma to our daughter and wife to my husband is a full time job. By the end of each day my body was physically exhausted and I was usually emotionally drained.
My greatest desire for my son during our homebound half-summer was to make sure that no matter what, he felt loved, understood, and that he knew we were not giving up on him.
My greatest desire for my daughter during our homebound half-summer was to make sure that she still had a wonderful summer full of love and laughter. June was hard for her as she watched her brother struggle. She began asking the “why?” questions about Autism and Ezra. She needed extra love and attention as she had a front row seat to the overwhelming force that Autism can be at times.
I had to ask the Lord to help search my heart for all the things that I should let go of in order to not only help my son, but to serve our little family as a whole. It got to the point that letting go was somewhat freeing. I knew each day that my focus was going to rest solely on my children, helping Ezra to overcome, and loving my sweet husband. It was enough, and it was good.
3. There is beauty even in brokenness.
Although I was brokenhearted to watch my son struggle, there were many beautiful moments. Every moment we made eye contact was priceless. Every hug and sweet kiss fueled my fire to keep pressing on. (Oh mamma’s, don’t take those hugs and kisses for granted; some of us wait and pray for such treasures.) Even during our toughest times, it would tug on my heart when my son was able to verbalize and cry out “Momma” in the midst of a severe meltdown; a tiny victory in the midst of a great storm. Every word said, direction followed, toy not thrown, glance in my direction, display of affection, and smile across his precious face made all the gut wrenching struggles worth it. The Lord was gracious to give me exactly what I needed when I needed it. Just when I thought I couldn’t cry another tear, my son would unexpectedly come over to kiss my cheek. There was beauty in the brokenness.
June sluggishly brought July and around this time, we were finally beginning to break free from the tangles that had so tightly bound my son. His doctors had worked with us continuously and we were finally beginning to have our Ezra “back” again. Things were not perfect, but we were able to venture out every once in a while. We took baby steps as we attempted to establish a new normal. We even braved a vacation to the beach that had been scheduled long before we ever knew we would be in the midst of such struggles.
As we began to try to acclimate our family back into society, we moved very slowly. We are still in that process. It feels as though it took all of July just to recover our strength and energy from all that June had to offer. With school just around the corner, we are gearing up for what we hope is a wonderful school year. This has been a long process, full of lessons, longings, and love.
There is something you should know, there are others just like us. There are countless families who have children with special needs and they are homebound. They cannot leave their home and they are lonely. Some have been homebound for much longer than just a half-summer. If you know one of these families, please reach out to them. May times people think we just “want our space.” This could not be farther from the truth.
If you are one of those families, I am sending you a hug. Press on dear parents. This road is a long and bumpy one, but nothing could ever compare to the triumphs (both large and small) along the way. This is a journey worth taking, a battle worth fighting, and a love like no other. Thank goodness God does not forsake us, even in the midst of a homebound half-summer.