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A Home of HIs Own
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It was a wonderful evening. My son, Matt, was cooking hamburgers on his new electric grill in the kitchen while his siblings and their spouses were in the living room laughing and conversing with my husband, Tom. I was with Matt, helping him to play the role of host. You see, this was no ordinary party. This was a house-warming party for Matt. We had just completed putting his new apartment together that very afternoon. It was a party 25 years in the making and each one of us were now witnesses to the impossible. Matt’s dream of living on his own was finally coming true.
Matt is almost 28 years old. He was diagnosed at the age of two as moderate / severe autistic – and that hasn’t changed. Although he speaks on occasion, he is mostly non-verbal and relies on other forms of communication; facial expression, gesture, and body language. He is highly sensitive to loud sounds, bright lights, strong smells and various textures and temperatures. His heightened senses were so very hard for him as a young child, but he found a way to deal with his sensitivities and now handles the onslaught of environmental stimuli very well. The severity of his autism meant the chances of him one day living on his own, in a place of his very own, was basically zero. This is a young man who 25 years ago should have been institutionalized . . . at least, the specialists all thought so. That was back in 1988, when autism was rare (1:10,000) and they assumed it would be more than I could bear, more than my family could handle, too much of a strain for all involved – but they were all wrong. Needless to say, Matt came home with me from his weeklong evaluation, rejoined his family, and our journey with autism began in earnest.
Is it no wonder then that I was amazed by my son every single day? Is it no wonder that each tiny, minute step forward was a cause for celebration? The first time his eyes met mine, the first time he called me “mama”, the first time he wrote his name, read a book, played with his brother Christopher. The first time he threw a ball, participated on a team (t-ball), sat at a desk, touched my face to comfort me, bought a gift for another person, said, “I love you”, made the honor roll at school, ordered his own pizza, cooked his own meal, or washed his own clothes. The list is as long as his life. Each step was a powerful reminder of his courage and determination and the hope for his future stayed with me.
With a diagnosis of autism and grim predictions from the specialists, was it any wonder that I worried over his future? What would happen to this precious little boy if something happened to me? Would they put him away like an unwanted toy and forget him? Even though the years sped by that fear remained. What I needed was simply time. I knew I could get him to independence – to that one magnificent goal – if I just had enough time. The road has been a long one . . . of course it has, because nothing goes fast when you’re dealing with autism.
Over the years I set goals and watched in amazement as he met them - day by day, month by month, and year by year. How quickly he met the goal was not the issue, but whether he could do it at all. Some goals took decades, like speech. Others lasted only a few days, like alternating his feet when he climbed stairs. For most goals, the progress was slow and steady - at a snails pace. But after witnessing a few thousand miracles you realize the time it took to get to the miracle just didn’t matter. And so we pressed onward - day by day, month by month, and year by year.
But even a slow pace wouldn’t have worked if I had not been open to learning about my son - his cues, his preferred forms of communication, and accept him for who he was. He was not like anyone I had ever known and in the beginning I had to resist the temptation to force him to fit into a mold made for the neurotypical. Thankfully, I realized early on there was no reason to force him into any mold, for any label, for no mold could’ve contained him. Matt was unique to the world and I needed to allow myself to follow just as much as I led. I learned early on what my role in his success would be. I understood, almost instinctively, that I was not just his teacher showing him how to button a shirt, hold a pencil, or in later years, use a stove. I was also his student, learning through observation, deciphering hidden meanings, and empathizing with him at every turn. If he were hiding behind a chair then I sat there too, with him, taking in the surroundings; the feel of the place, the lighting and the sounds. If he repeatedly drew the same design on paper, then I hunted for what it meant until I figured it out. Matt was my biggest mystery and I was his biggest fan. Together we navigated the rough seas of autism - but we also drifted beside beautiful shores where we could see a future filled with smiles and joy - and independence. All the signs were there. We just needed time.
My wonderful, amazing son has wanted a home of his own since he was 19 years old. For 10 long years he has worked ever so hard to get the skills to live on his own. And then one day last April I realized Matt was ready to attempt it. The knowledge just came to the surface of my mind and I couldn’t shake it. I have known for several years that he was ready to try his wings. For the past several years I had tested him repeatedly, found a few areas of concern and made those concerns evaporate through setting and reaching new goals. Now the only goals that remained were those involved in the day to day challenges of actually living on his own, and I couldn’t deal with those until he was actually on his own. The time for the transition to independence had arrived.
Finding the right place was our next step. It had to be perfect – and I do mean perfect. It had to be safe and it had to be conducive to Matt’s special needs. I found such a place, an apartment complex specifically for the elderly and disabled. Nice little duplexes snuggled in a cul-de-sac, bordered by pine trees and maintained with high standards. It was income subsidized and private. Matt was put on the waiting list with a 4-6 month wait. That gave us more time . . . time to get his furniture together and gather household items . . . time to save money for his bills . . . time to simply adjust to the idea that a big change was coming.
As it turned out, I had 8 months to prepare myself and I honestly thought I was – until the call came. I was talking on the phone with Tom when my call-waiting beeped. I thought it was the mechanic with news about my Jeep and asked Tom to hold a second while I took the call. As soon as I heard her voice I knew who it was and I knew why she was calling. Before her words could land on my ears my legs began to shake and tears began clouding my vision.
“Hi Liz, this is Rhonda. We have an apartment available for Matt.” She stated happily. I somehow managed to make the appointment to sign the lease, thanked her and said good-bye, then clicked back over to Tom.
“Tom? Matt just got his apartment.” Then I started to really cry. Tom was caught off guard. He was silent for only a moment (from shock), and then also began to cry. It was finally here. The day was set. The transition to independence would begin in 10 days. All of a sudden I didn’t feel so ready anymore. What if I was doing this too soon? What if he needed more practice? What if he couldn’t do it? For the first time since Matt’s diagnosis I really doubted myself. How will I be able to do this? What if somebody hurt him? What if ….. Oh, the enormity of the “what ifs”.
I dried my face, took a breath in and out and told Matt about his apartment. Matt, eager to move, ready to move and thrilled to move, danced around and thrust both fists toward the sky, “Yes!” he exclaimed over and over. I smiled. Matt’s moment of joy completely took center stage. I knew deep down that of course he could do this, but it still took a few days for me to feel that same joy and confidence. I had to wade through my grief and my fear first – grief in having this wonderful young man move away from me and fear of the “what if”.
I summoned all my courage and got busy helping him to label his boxes, make a move-in schedule, and put a plan in place for how exactly to do it all that would give Matt a sense of empowerment and yet, not overwhelm him with the change. Thankfully, the apartment was ready before the date given and we were given access to it a week early – a blessing in disguise. I took that chance to slowly move boxes over, slowly get him used to going over there and using his new key. He was so excited about opening that door the first time that he fumbled the key a bit – but then stepped eagerly into his new apartment. When we left that day we went immediately to get new keys made - one each for me, Tom and his big brother, Christopher. As we walked out of the store I realized Matt was no longer smiling. It took a bit of questioning before he revealed to me he was scared. It had finally hit him . . . he was moving away.
Moving away for the first time, to a new place, a new area of town with new surroundings and feeling unsure of one’s self is a pretty natural response I think. All he needed was support, a schedule, and time . . . lots and lots of time. Once Matt realized that he didn’t have to leave that very day his smile returned and he calmed down. He started marking the days on a calendar – the countdown to his first overnight in his new place.
After a day at home on a normal schedule, Tom and Matt started carrying boxes over to his new apartment while I was at work. Tom told me later that Matt looked totally dazed, not knowing what to do with room after room of boxes. He told Matt not to worry - Momma had this. He said Matt smiled immediately and calmed right down. He asked for another day off - just a nice normal routine day - before packing and moving boxes again. He needed time to take it all in. The change was hard and his day to day routines were being threatened. We took a few days off.
Tom had to work on the moving day for furniture and my Jeep was in the shop - I was more than stressed. That’s when my step-daughter, Sarah, her husband Paul, and Christopher came to the rescue, bringing 2 trailers, a truck and plenty of muscle. As I waited for their arrival that morning I had an epiphany. I had been thinking about how huge this was, and how this day would be the biggest day of his life – Matt’s biggest challenge. I said it out loud as I looked at my reflection in the bathroom mirror. Then the thought occurred to me, that heck, it was the biggest challenge of my life too, but realized in a fraction of a second that that just wasn't true. I corrected myself immediately.
You see, 29 years ago this same week I held my newborn son Daniel in my arms and watched the heart monitor mark his last heart beat - THAT was the hardest day of my life. My biggest challenge was to go on living without him. I realized that Matt’s move, while extremely stressful for Matt, was not all that hard for me. I had survived the death of a child and when I eventually, finally re-entered the world, I knew I was stronger. Matt was born the next year and I knew I could handle anything life handed out - A N Y T H I N G – except the death of another child.
That was why his autism never fazed me – after all, there are worse things. That’s also why I was never in a hurry to complete a goal, never needed to make him fit a mold. I knew, in that instant, staring in the mirror, that I could do this and if I remained strong, then Matt could do this. He got his strength from me, and if I waivered even a little, his courage would fade. I reminded myself that this move was not about sadness in him leaving, it was about celebrating that he could leave. I knew in an instant that not only could I do this, I could do this with my hands tied behind my back and blindfolded. My son needed me and I would walk through fire if that’s what it took to keep him focused and calm. I looked back at my reflection in the bathroom mirror - "You got this, Liz" - and I did. My grief at the idea of him leaving dissipated into thin air and I was once again myself….
The kids arrived shortly after and we started hauling; furniture that I had saved and collected over the years, more boxes, and even the cabinets that I remade into end-tables. His siblings were fast and efficient and in high spirits. Before we knew it, they were gone and Matt and I were alone staring at an apartment of boxes and furniture and general chaos. The rest of the day it was just him and me and an apartment in dire need of organization.
"Matt, first we divide the boxes into their rooms", and immediately he began picking up boxes, reading the labels and taking them to the correct rooms. Then we moved furniture to the locations of his choice. "Where do you want this, Matt, here or here?" Giving him choices narrowed his focus and before you knew it all the furniture was in place, tables placed, book cases assembled, books on shelves and a kitchen with actual cookware, plates, cups, and silverware all neatly stored. Matt was a part of every decision, allowing him total control on how his new place would look and feel. After hours of organizing and assembling we needed a break – so we went grocery shopping to fill his fridge (which was pretty easy as he stills only eats 15 foods). We also bought some cleaning supplies and when we had all the food stored we cleaned surfaces, drawers, shelves, TV, etc. Then back to putting a bathroom together and finally the bed. Matt assembled the bed by himself, just as he had the bookcase – all those Lego schematics he had read over the years had really paid off. He read the schematic and piece by piece put his bed together without any help from me. As I viewed the finished product I puffed up with enormous pride. I helped him to make his bed and then moved on to hanging his curtains. In hanging curtains I asked Matt to tell me when the rod was level – something he can eyeball perfectly.
When we left for the day his apartment had really changed from one of complete chaos to a very nice Matt “man-cave”, completely decorated in his favorite Virginia Tech colors of orange and maroon. As we drove out of town Matt told me he needed a few more days off. We made plans for 2 days later, on Tuesday (his official house-warming day), to finish up. Matt needed time to re-boot. It was all so much and even with going over only every other day the pace was too fast. We needed to slow down, to a snail’s pace if possible, because after all, it was a huge deviation from his normal routine. Matt chose the schedule he needed, and I understood. We were not in any hurry.
When Tuesday morning arrived, Matt and I put the last of his beloved books in the car and went back inside to wait for Tom to get home. Matt walked slowly to his old game-room and stood in the doorway and looked around. It was now just an empty room with dust bunnies and a few odds and ends of things that would remain. I put my arms around his shoulders, “It’s all going to be OK, Matt.” He turned and hugged me. He was doing all he could to just keep focused on the task at hand, but he was nervous, his old routines were being altered one by one and the stress was almost overwhelming. His most important routine occurs each night as the sun goes down Matt needs his books around him at night – about 30 Manga books piled neatly on three sides of the bed, surrounding him and shielding him from the fear of the dark. He could not sleep in his new place without that nightly ritual, so the last thing he took was his books. He was ready.
We met Christopher and his sweetheart, Jessie, in town and headed over to Matt’s place. His brother programmed the TV and help Matt hang his posters. We finished with small odds and ends as his other siblings arrived and marveled at the beautiful way Matt had decorated. Matt opened more presents, cooked us dinner, and tried very hard to be a good host. Round about 9pm he was winding down - his eyes had that half-open look and he was spending more time in his bedroom away from everyone. That was Tom's cue to get going and all the kids took the hint and said their good-byes. With everyone gone but Matt and I, we kicked back, put on a movie and just relaxed. After the movie he went back to his bedroom again to lay out all his books. I went and put on my pajamas and as I came out of the bathroom I saw him sitting on the edge of his bed flipping channels with the TV remote. I couldn't help it. I ran and jumped on his bed, landing behind him and put my arms around him and hugged him. Matt instinctively relaxed backward into the embrace, put his arms over mine and we sat there like that and watched the last moments of Ghostbusters together. His leaning into me touched my heart. I could feel the love, the "thanks, mom" that I knew he couldn't say. The feel of him in my arms was all I needed to know he was happy, proud of himself, and thankful not to be alone that first night. It was so very hard to let go.
The stress of change has been too much and although we go over every day he can’t bring himself to stay there overnight more than once a week . . . but I expected that. It’s just not that big of a deal how often he spends the night alone. It’s a transition and this particular transition will be a slow one. I’m still in awe that the transition has begun. Of course it’s going to be a long road and sure, the pace will be slow, but the goal that has been set is a wonderful, almost inconceivable goal. It’s not like dropping your kids off at college. It’s not like the “moving away” that most people envision. It’s a transition and as with all things autism, this transition will take time – lots of time.
It doesn’t matter how fast he is acclimated to his new surroundings, it’s that he is attempting it at all that counts. That’s the miracle. That’s what touches my soul. So it just doesn’t matter if he only stays one night a week, because in time he will move it to two, then to three, and one day, maybe six months from now, or maybe next year, Matt will live on his own completely . . . in a home of his very own. Amazing.