On November 23, 2003, at 3:48pm, I welcomed my beautiful baby boy into this world. Alex was such a content baby. He slept through the night before he was 3 months old. He rarely fussed or cried. He was happy nearly all the time. We were constantly told how lucky we were to have such a “good” and “easy” baby.
Alex was about 9 months old the first time it crossed my mind that something might be amiss. I laid him down for a nap and soon after heard what sounded like faint pounding on the wall. I ran into Alex’s nursery and saw him lying on his stomach in his crib, gently bumping his forehead against one of the slats. I had a brief sinking feeling that I quickly brushed off. Over the next several weeks; however, that feeling would return repeatedly. I began to take notice of the fact that he wasn’t imitating or initiating play. He wasn’t responding to his name. He wasn’t pointing or gesturing in order to get my attention. He wasn’t following my point when I would try to show him something of interest. He loved being talked to and played with, but he didn’t seek me out for attention. He was content to be alone.
During Alex’s 12-month check-up, I shared my concerns with his pediatrician and even said, “I am afraid my son has autism.” The doctor took Alex out of my lap, bounced him on his knee, and Alex let out a big belly laugh. I felt a “pat” on my knee and heard the doctor say, “Your son is not autistic. Look how happy and social he is. He would be terrified of me and he would be screaming and crying if he had autism”. I pointed out several milestones Alex had not met, and we agreed to discuss my concerns again in three months during our 15-month check-up. Three months later, after having my concerns dismissed again, I left the doctor’s office in tears. I prayed for guidance and strength during the entire drive home from Fayetteville to Bentonville.
Early the next morning, I called First Connections, the office that coordinates Arkansas’ Early Intervention Services. Within a couple of weeks Alex was scheduled for a developmental evaluation, as well as speech, occupational and physical therapy evaluations. Alex was 16 ½ months old when he began receiving in-home speech and occupational therapy. As the months passed, the list of milestones he missed, along with my fears and concerns grew and grew. His progress was slim-to-none. We began seeing a doctor in Bentonville who gave us a referral to Schmieding Developmental Center.
Words can never accurately convey the range of emotions I experienced as I sat across from a professional who was telling me that although my son was 2 years old, his IQ was in the range of a 6 month old’s. According to her data, Alex had mixed developmental delays that were severe and profound; and although he was too young to be diagnosed at the time, he “might” be autistic.
My mind quickly escaped that meeting as I struggled to hold myself together. I thought my tears would never, ever stop. I did not know it was possible for a human being to cry so hard and for so long.
It was during this time that Alex’s dad and I separated and eventually divorced. I promptly placed Alex and myself in a protective bubble. I kept both of us hidden away from any conceivable rejection, nastiness or harm we might experience from those who did not accept us or understand us. I lived in this bubble, with Alex snugly under my wing, for quite some time.
Thanks be to God, He sent me an angel named Bryan. Bryan wrapped his arms around my bubble and he held on tight. He refused to let go and he refused to give up until he succeeded in popping that bubble for good.
Shortly after receiving the report from Schmeiding, Alex began attending a developmental preschool that offered on-site therapy services and early intervention programming. Alex continued to struggle to meet developmental milestones. He continued to have significant delays in speech/language and communication, as well as difficulties in fine motor skills, self-help skills and sensory processing. He began toe walking, following lines, and hand flapping.
Two months prior to Alex’s 4th birthday, he had a comprehensive evaluation at Dennis Developmental Center. By this time, I had researched anything and everything I could find about autism and pretty much knew that was Alex’s diagnosis. In the deepest part of my heart, I knew when he was a year old. Even so, as I lay awake during many nights, there was a teeny tiny voice that would sometimes whisper, “What if it isn’t autism and he is going to eventually catch-up? What if it is just a delay and he’s going to be fine?” When the team finished their evaluation and they were ready to talk with us, I could tell by the look in Dr. Fussell’s eyes that it must never get easier to tell a parent there’s something atypical about their child.
During the drive home from Little Rock, as I wept, all I could think about was how desperately I wanted to be able to talk to my child and know if he understood anything I said to him…to know if he had any idea how much I loved and adored him. I longed to hear him talk to me…to hear him call me “Mommy” or tell me “I love you.” Letting go of that tiny splinter of possibility that I was wrong and wrapping my mind around the permanence in the new diagnosis was brutal. I was overcome with fear.
It’s hard to describe the time in your life when all of the sudden everything takes a complete stop. Some force picks you up and suspends you over a black hole and you dingle and dangle, helpless until you are dropped on the “other side.” The other side isn’t anything like what you have planned or hoped for but a totally unfamiliar dark side. There you walk aimlessly searching for light, hoping that another force will take you to a side where everything is fine. You weep and beg and plead for a light and a path to be set before you. You grieve and you mourn. You curse this unchartered territory.
I lived in that dark, lonely place for a while, but eventually I began searching for a light. I began reaching out to other moms of children with autism. I researched more, I read more and I began to advocate more. I became involved with our local support group, Autism Involves Me (AIM). My family, along with many others in NW Arkansas, have been blessed by being involved with AIM. Isolation is a common feeling among families with autistic children. AIM hosts family events throughout the year that focus on providing a secure, loving, and judgment free environment. Families who attend these events are all going through the same struggles and it’s refreshing to be in the company of those who truly understand.
Over the last 9 years, much has changed in our lives. Alex’s dad, step-mom, Bryan and I are all involved in parenting Alex. We embrace, love and accept Alex for who he is. We no longer dwell in the why’s or what if’s. It is not our goal to change him, our hope is to change the way the world views him and others like him. We want to forge new paths and open new doors to give Alex the opportunity to live a life that fulfills him and makes him happy.
Our fears and worries have definitely taken a different shape as Alex ages. Thinking about and trying to plan for Alex’s future weighs heavily on our family.
Cottage home communities, or pocket neighborhoods, are a great concept and are becoming increasingly popular. Some developers are tapping into this growing trend to create homes for adults with disabilities The adults with disabilities live safely and permanently in homes owned by their parents or a family trust, within a neighborhood of peers. The adults with disabilities are able to get the personal support services they require, all while living with roommates of their choice, and benefitting from broad social, recreational and vocational opportunities that are so rarely available for these adults.
Unfortunately, this type of community isn’t yet available anywhere in Arkansas. In fact, few good housing options exist today for adults with disabilities in Arkansas. Institutional housing is not the right choice for our son; however, as my husband and I age, we know it will become impossible for us to care for our adult son. More importantly, the transition from a life-long residence would be far more traumatic for our son when he is an older adult rather than when he is a younger adult.
We love this community. We are personally and financially invested in this community. It’s the only community our son has ever known. Unfortunately, the time may come when we have to leave this community because of a lack of resources in housing for adults with disabilities. We need this type of housing in our community. We need this peace of mind for our son’s future. We need to know that he will be safe and taken care of after we are gone; and I know many parents in our community who need to be able to count on safe housing for their disabled adult children as well.
People often ask me, “What is it like parenting a child with special needs?”. It’s beautiful and it’s challenging. A significant amount of time, physical and emotional energy is spent on parenting Alex. This limits how much we have left to give to other members of our family, which can lead to problems in those relationships if we don’t intentionally focus on all of those we love. For me, even when I get a good night of sleep or a break for a few days, there is a level of emotional and physical tiredness that is always there. Often, my husband and I fall into our roles as caretakers of Alex, rather than being husband and wife. When our oldest son, who is now 21, lived at home, it was a constant balancing act of trying to make sure we spent enough time with him, checked in on him, and made sure he felt loved and wanted. We do not have immediate family close-by to help care for our son, which can limit our ability to participate in activities that aren’t appropriate for or don’t involve our son. Finding others to care for him is not easy because we have to trust 100% that he will be safe and happy while we are away. Respite is infrequent. We miss social events. My husband and I both ask for grace from our employers quite often when we have to miss meetings or arrive late to work or leave work early. It is challenging at times to feel included in our community. There are times I feel like an outsider around moms of typical kids. Recently, at a wedding, during the mom and son’s first dance, I had to work really hard to keep from crying at the thought that I may never experience that special moment with Alex. There are times I struggle with feeling like I have to explain my son’s behaviors and quirks when we are in public or with someone unfamiliar. Outings and activities are almost always planned in advance and rarely spur of the moment.
So, yes, I’m not going to try and pretend there aren’t challenges. But, I can say with confidence raising a child with special needs is beautiful. Alex has broadened our horizons. He has increased our awareness of our own inner strength. Alex has deepened our connection and cohesion as a family. Having Alex has encouraged our desire to reach out to families similar to ours and to connect with community support groups. Being Alex’s parents has brought us to our knees and strengthened our relationship with God. Raising a child with special needs shatters all the “should be’s” that most of us idolize and build our lives around, and puts something else at the core: love and understanding. It’s impossible to know the depths of victory and joy until you see your child overcoming challenges or learning new skills he’s been working so hard on for months or even years.
We deeply appreciate the gift of our son being unashamed to be who he is, to express himself without reservation, to see his love of life, his lack of ego and his pure, precious heart. Being able to see the world through Alex’s eyes…to be so innocent and pure, to be so full of joy and wonder at the simplest of pleasures, to be unapologetic for being who he is without fear of disapproval…these are all amazing gifts. We are blessed and we are thankful for Alex being exactly how God made him.