Somewhere on the Spectrum
When I was pregnant, I pictured many “future” memories, from taking my son to LA Galaxy soccer games, to dancing with him at his wedding to “What a Wonderful World.” I wanted him to be well rounded, athletic, scholarly, and independent. Essentially, I had unrealistic expectations for him, but they were the same goals that every parent has. I wanted more for him than what I had. I wanted him to have financial security, but not so much that he wouldn’t know the value of hard work. I wanted him to know the importance of an education. I wanted him to be a leader, who would gladly defend the underdog. I pictured family holidays, school dances, and sleepovers. I would fulfill my role as his mother until he was old enough to venture out on his own, and I knew I was born for this. I was here to be Jackson’s mother.
Regardless of my “predestined” role, motherhood was not easy. Jackson struggled to take to breastfeeding. His bowel movements were irregular, and his sleeping was pure chaos (It would take me until he was four to solve his sleep issues). When returning to work at six months, he was waking every hour. I tried numerous calming strategies from the Pick Up Put Down Method from The Baby Whisperer to the Five S’s from the Happiest Baby on the Block. I gave up dairy and soy in order to help his digestive issues, and this brought some relief. I slowly moved into a life of seclusion without even realizing it. I couldn’t admit to my friends, or maybe myself, that I didn’t have a grip on motherhood. I was failing at it. While friends were venturing out with their kids, I stayed at home. Jackson would become overwhelmed in certain situations, and there were many times I had no clue how to fix it. These months were just about survival, and looking back, they were kind of a blur.
When Jackson was 13months, we were over at a relative’s house for a family function of some kind. He was finally meeting his cousin. They were both only two weeks apart, so we were excited for the “playdate.” This small moment had lasting ripples, and it would take my husband and me two days to fully talk about the experience. We realized, when watching our son not interact with his cousin, how developmentally behind he was in speech. He had maybe three words, and his cousin was identifying characters in books, expressing his needs, and offering verbal affection to everyone in the room. This short visit prompted a speech evaluation not soon thereafter and entrance into the Early Intervention Program.
From the beginning, and maybe through divine guidance, my son’s had amazing therapists. We started in speech therapy, but we soon realized that he needed special instruction and occupational therapy. I still had high hopes that he could be fully mainstreamed. I signed him up for a local preschool with a distinguished reputation. He lasted two weeks before I was called in for a meeting. His teachers were caring and experienced. They were coming from a place of compassion, but it did little to soften the blow. When I was told that they were noticing many “red flags” and that he could return only with a fulltime TSS, I used the last of my strength to hold back my tears. I didn’t want to cry there. I needed to be strong. I made it to my car, and I cried. I shed tears for the boy I knew I lost. The boy that may never get married or attend a school dance. The one who may never have friends or tell me he loves me. It was a lonely place to be in that moment, and thinking about it now even brings back the isolation I felt.
I eventually wiped away my tears and moved forward because what else could I do? He needed me to be his strength and his voice, and so I continued on this journey. About two months later, in November of 2014, Jackson was diagnosed with autism and mixed receptive language disorder. In that moment, I remember thinking that it wasn’t so shocking. Maybe I expected it. Maybe I knew it all along. I’m not sure, but I was ready for the diagnosis. I still cried a little. I found myself on the floor of Barnes and Nobles, thumbing my way through the small stack of books on autism. I was lost; however, I felt in my core that we would be okay. I just needed to let go, a lesson that I am often reminded of when trying to “figure out” my son’s needs.
Today at four, he is in a weekly 20hour ABA therapy program with three Therapeutic Staff Support Specialists. He also gets speech and occupational therapy in his verbal behavior classroom. It’s taken a long time to get to this point, sleepless nights on Jackson’s floor, phone calls with insurance companies, and numerous books on sensory needs. The hardest part for me, in all honesty, was before his diagnosis. I didn’t understand my son or his needs. I didn’t know if he was cognitively aware of what we were doing. I had no idea if he heard me when I talked to him. Once we had his diagnosis, my husband and I spent several months learning all we could about autism. Our son was no longer a mystery. We understood his needs. We were able to predict his meltdowns with accuracy (and hopefully learn to avoid them). We realized that our son was fully capable of learning (and is quite smart), but our methods of teaching him have to be creative and on his terms, not our own. He understood much more than we gave him credit for, and he shows us that often. In the months that followed his diagnosis, I felt like my husband and I became better people. If you let it, autism can push you towards something greater within yourself.
About four months after his diagnosis, I started becoming very active in the autism community. I became coadmin for an online support group for other families with children who have special needs. We try to plan playdates and provide information on doctors, insurance, etc. It’s an online family to me, and it feels comforting to be around other parents who “get it.” About the same time, I decided that I was no longer living a life of seclusion. It was time to be a part of our community. Jackson has been to parks, movies, farms, road trips, and airplane rides. These trips are not taken lightly. There is a lot of planning involved, and some anxiety, too. However, with online support, amazing coworkers, supportive friends, our caring family, dedicated therapists, and my “rock” of a husband, I no longer feel lost or alone.
Every so often, I have a weak moment. Sometimes it is something so minor, like hearing a young toddler singing Christmas songs in Target, and I wonder if I’ll ever hear my son do the same. Those moments are still there, and I’m not sure if they will ever go away. Yet, there are so many amazing moments. Those are the moments that fill our lives, like the first time our son said “I love you, too” just last week. Or each morning when he gets a blanket from across the room and brings it to me to cuddle. Those moments are not just amazing; they are magical to us. We are learning not to underestimate our son because he is starting to master skills that we didn’t think he would ever learn. There is a quote floating around on Pinterest by Ellen Notbohm that I often think of when those negative thoughts seep into my psyche, and it helps me to keep life in perspective. “When you lapse into thinking of all the things your child with autism can’t do, remember to add ‘yet.’”
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