Life has been messy, to say the least. It’s been difficult to pin point where exactly my next move will be because I’ve been so busy still tending to unresolved issues and uncertainties. In the midst of struggle, it can be easy to feel lost and confused, abandoned and alone. The overwhelming guilt attributed to probably doing something wrong at some point which has now caused this mess in your life can be staggering. I know because I’ve been there… Heck, I’m there now, day in and day out, receiving what are now countless rejections for job opportunities, figuring out how to redeem myself in the eyes of my family, trying desperately to make up for past transgressions, battling through self-doubt and pushing through insecurities that I had thought was long gone. These things become more unbearable with time, time that has been spent worrying and wondering and hoping without any sort of plan or accountability or trust. Yes, feeling broken is something that happens to everybody, even those born with a silver spoon in their mouth, and even those of us who seem to have it all together according to the rule book from the outside. We all struggle, feel guilty about it, and want more for our lives without a clue as to how to get it. Rest assured, this is how your story gets written.
Our story is how we connect to each other, and like every good novel, all protagonists have to go through a struggle, some sort of battle that makes or breaks them. This conflict is what makes the story interesting. It’s what helps us to relate and commiserate with the main character. We find ourselves in him or her and yearn for more. Ask yourself this… would you rather read a story, or watch a movie, in which nothing bad happens at all? Most of us would say no. Why? Because it’s through struggle and conflict that makes a story worth reading. And the same can be said for your life.
So I have decided to tell my stories, instead of continuing to dwell on all that I’ve endured, because after all, we are the hands and feet. We have an obligation to share what we’ve learned and what we’ve gone through so that we might help others. This will be a four-part series, some stories being a bit more personal than the rest. What I hope to achieve by this is simple: to let you know that you are not alone. You have not been forsaken and you are not being punished. You are being put through the shredder to become your best self. And only pain and struggle can do that. Let’s begin.
When I became pregnant in late 2009, I had such high hopes for my little one who couldn’t even see yet. I fantasized about his birthday, what kind of activities he’d be interested, what kind of fun things we’d do as a family, what kind of friends he’d have, what kind of sports he’d play (of course he’d be athletic), and what his favorite subject would be in school. I had heard about Autism being a thing that was becoming more and more diagnosed at the time, but I was convinced that if I did everything I could to be healthy and safe throughout my pregnancy, I’d give birth to a perfect child. Now, of course to any mother who’s been there and done that, that’s total and complete BS. Just keeping it real. Of course we all have high hopes for our unborn children, that part is normal. But to believe that you can avoid future possible issues he or she could face just by how you control yourself is a little insane. But at the time, I was a bit of a control freak. If there was a problem, I wanted to fix it, I needed to fix it. I didn’t do well with unplanned chaos in my world; it overwhelmed me. But here I was, about the have a baby, and thought I could control every aspect of that as well.
How silly I was! My son was born when he was supposed to be born and weighed the perfect amount for my tiny frame to support and birth. He was a happy baby and although he exhibited issues with breastfeeding, I didn’t think it to be anything serious. Besides, I could still feed him and he’d still grow. I did everything the books tell you to do if you want a smart kid. I read to him, played with him, monitored his poop. I introduced foods at the right time, and tracked his motor development. He had his shots on schedule. And then came the time for him to start talking. But only, he didn’t. He made sounds, but no legible speech. I freaked. Surely, if I get him to a specialist, I reasoned, he’ll get better, we can fix it. And so I did. He started early intervention at 19 months. I had his ears tested, praying for some hearing loss because then I could just give him tubes and ta da, all better! When that didn’t pan out, I took him to the ENT doctor. Maybe he was having difficulty breathing, which might be impacting his speech. Or maybe he had a tongue tie. That’s been known to slow speech development. He was breathing fine, and he had a small tongue tie but nothing that would’ve affected his speech to the degree that it had been affected thus far. I pleaded with our case manager for speech services in addition to the behavioral services. He just needs a little more speech, I reasoned. If he had just another session per week, he’d get the chance to practice more. And it’ll be fixed. Ta da! It seemed simple enough to me. But because early intervention is state-funded and money of course is always an issue, they denied my request because of the money and because he hadn’t been receiving services long enough to warrant additional services. There was a loophole, however, his behaviorist explained. You could get more services if there is a diagnoses. And so that’s what I did. Crazy Robin started her quest to get a diagnosis. If that’s what it took to “fix” this problem, then so it would be done.
I took Noah, who by this time was a new two years old, to a specialized hospital for children to get him evaluated for possible delays related to Autism and similar disorders. I figured it was just a test that’s results would confirm that he didn’t have any neurological differences. It was just to cross it off the list. I did not expect to go into that place to receive life-changing news. The doctors found that Noah exhibited behaviors associated with Autism, that he was borderline on the spectrum and that he also had expressive language disorders as a telling sign. We were then prescribed a laundry list of therapies and resources that were at best overwhelming to both myself and his father and I remember leaving that place just disillusioned. I just wanted to help my son, to “fix” this problem. I wanted him to be normal. I knew he would struggle just being a Black male in this country. But now we had a real diagnosis… a real problem. I wasn’t ready.
This news drove Norman and I further apart than we already were; he was in denial and accused me of trying to find something wrong with Noah. I just wanted to advocate for him so that he could live a normal life. That’s all I wanted; that’s all any parent ever really wants for his or her child, isn’t it? It took time for him to come around, but un-knowledgeable as I was, I dove into helping my son with all I had. I moved things around in my work schedule and personal life to ensure he was getting everything he needed to catch up to his peers. I enrolled him in preschool, even though we had a live-in babysitter in my mother in hopes that interaction with unfamiliar kids his own age would encourage gradual speech development. Upon Norman joining the military, I enrolled Noah in a special program designed for people with disabilities and illnesses to receive the services needed for treatment and care without much fuss. It also determines where we can be assigned so that no matter where we go, Noah can receive the care we needs. I learned the law and how it pertained to ensuring Noah received a fair and appropriate education within a mainstreamed classroom. And needless to say, all this advocating impacted my career goals greatly. I found working full-time irresponsible, especially with two young children who were by this time both receiving services through Early Intervention and outside therapeutic settings. I put aside my aspirations and what were my goals at the time to be there for them. Norman was active duty, and there was no telling when he’d be around. I had to be prepared to be both mom and dad, and working a full-fledged career was irresponsible at this point.
As I write this, we have received three diagnoses for three children, with more evaluations scheduled for this year. I don’t go a week without receiving an email or phone call pertaining to one of the children’s behavior, or without being on the phone following up on a referral for treatment or testing, or making an appointment for the aforementioned. It’s exhausting. And it continues to affect my ability to have any kind of “normal” life. Many of my colleagues are professional women who have figured out the secret between balancing womanhood, motherhood, and career-hood seamlessly, although I know it takes a lot of sacrifice on their part. Me, on the other hand, the one who was supposed to have it all figured out by now… well, I’m still struggling, trying to desperately figure out my next move before running out of time, whatever that means. I feel resentment at times. I get angry. I feel guilty. I feel regret. There’s a sorrow that comes over me when I think about my life and the day by day routines that have grown so repetitive that I have literally had to strip everything I knew about what parenthood was from my upbringing to cater to the different minds that run my household everyday. It’s exhausting and depleting. It’s isolating. It leaves you with the constant need to explain your children’s behavior, to somehow figure out if it’s because of the Autism or ADHD, or if he or she has just decided to be a little butt just because. The overthinking makes me want to scream just about everyday. But I am their mother. They are my children. And regardless what I am feeling inside, I still feel a sense of urgency, responsibility to be their fiercest advocate and cheerleader I can be.
As a modern woman, there can be an emptiness that is associated with being “just a mom,” without something else to add onto your identity. I’ve felt this, and still do. But I know that this struggle, this sense of loss somehow adds to my journey and gives life to my story. Sure, I could’ve had a child who somehow seems to balance respectful behavior with straight A’s, and an uncanny ability to be good at every sport or activity he or she attempts. The child that most people welcome anywhere and who leaves an indelible mark wherever he or she goes. No doubt my kids will leave a mark on whomever they come in contact with, but I am no longer concerned as to whether it’s good or bad. They have changed my life and have made me the person I am today, who is slowly still figuring out her purpose. But for whatever reason, God believed I could handle these three, even if he knew that at the time I had them, I wasn’t quite ready. I know I will get there.
You see, we are never just given tasks we can handle, for we’d never grow if we were. Challenges are there to make us stronger, to get us to where we need to be to live our absolute best life. And once we get there, it is our job to shine the light so that others might follow… to be the hands and feet.
3 thoughts on “We Are the Hands and Feet: Our Learning Differences Journey”
Thank you for sharing your truth. You have every right to be an advocate for your children even if that means you’re the only one. Your closing sentence is on right on target. Continue to show your strength.
Thank you for sharing! 😪😭 I am still praying for the strength.