I am raw. Beleaguered. Frustrated. Angry. Concerned. And depleted. But most of all - I am determined!
This is what raising a child with special needs feels like.
Much of this, has nothing to do with the child themself, but more with how the world views them, and in turn, treats you as their parent.
My beautiful daughter, Navy, is 4. She came out colic and we joke that she still is. My husband has teased that she’ll grow up to be the first female dictator of North Korea, because, girlfriend is a force. I mean that in the most sincere way. She is astonishing. She is vibrant, and tenacious and delicate and unruly and tender and sweet and wild. She has problem solving skills that are unparalleled. (Seriously. I dare you to find a lock she can’t pick!) She’s not like anybody else I’ve ever known and I’m beyond grateful that I am the one she calls Mom. But ... I’m also beyond exhausted. It goes hand in hand.
When Navy turned one I told our pediatrician that I was concerned that she had a speech delay. This was written off, and I was told that I was unfairly comparing her to my son, who at one had been verbally advanced. I spoke up again at 18 months, and also when she turned two. I was met with the same reaction. Shortly after she turned two we moved out of state. I had to establish a relationship with a new pediatrician and in her second two year old visit I readily told this new doctor about my speech concerns. Much to my surprise he also thought she was fine. It was only when she was turning three, and I was losing my mind at our inability to communicate, that our doctor (begrudgingly) referred me to a speech pathologist.
Our speech pathologist was nothing short of a God send. She was the first person in this journey who made me feel heard. She saw the delay, and within a few months Navy began weekly speech appointments working with her. We saw results immediately!
This was my first taste of parental vindication. See, I’m not a doctor. I’m actually kind of on the other end of the thinking spectrum. I’m artistic and colorful and nothing close to a medically minded person. But I also happen to know my daughter. Really well, it turns out. And in having my speech concerns validated with a speech pathologist, our direction shifted gears.
My confidence in my doctor was further shaken earlier this year. I returned to him adamant that “something more” was going on. Her speech had improved, but there was another factor in the mix. All along I’ve been concerned about this “something more” but I was under the impression that if we could crack the speech code and communicate, whatever else “it” was, would smooth itself out. And while communication has helped, it’s also shown that the “something more” is still very much at play. My doctor sent us over to a woman who I believed was going to give me the answers to all of my questions. She sat carefully and listened to me. She offered empathy to our struggles. And she offered a myriad of suggestions. I gobbled it all up.
I had been hoping for a diagnosis. Hoping for a label because it would allow me to Google, research, and problem solve. Sometimes the first step is identifying the problem, right? Turns out, the woman I was meeting with was a “parent educator” and could not offer me a diagnosis. The suggestions she gave ranged from useful to useless, and the more time I spent with her, the more my confidence in her help collapsed. Ultimately she agreed with my concerns about Sensory Processing Disorder, or SPD, and urged me to see an occupational therapist, or OT.
My pediatrician was not helpful in referring me to an OT. You might think I’m a fool for sticking with him (and maybe I am). I DO believe he is an excellent doctor but his strong suit is not as a specialist. (He is however, an ear infection champ!) I’ve learned that he’s not my resource for dealing with behavior, which has put the burden on my own shoulders. A neighbor suggested a clinic to us (where they had received a diagnosis for their son) and so ... I made an appointment.
I approached this appointment with a heart full of hope, and I left the appointment ... massively dissapointed. After a year plus of desperately trying to figure out the “something more” I felt as though we had again slipped through the cracks. The OT we met with asked me a series of questions, none of which addressed the strain on our family, and ended the appointment by asking what three behaviors I’d most like her to help improve. I answered by saying, “I don’t have three concerns. I have one. I’d like to be able to enforce boundaries.” I was then informed that that would require a diagnosis from the neuro side of their business (how could I have known?) and that she’d refer me if she saw a need after working with Navy in play therapy.
I got in my car, and made the neuro appointment on my own. Navy is scheduled to see a psychologist (finally) in February. I am cautiously optimistic. She’ll remain in play therapy to treat her SPD until then.
I know a few moms who have children with special needs. Some of them stumbled across their diagnosis by accident - or at the very least, with ease. Some had to fight, and hard, to find the answers they were looking for. I’m in the latter group for sure.
I’m not sure that my Navy has autism, but that’s what my gut has told me from the start. I’ve scoured the internet for information about little girls on the specturm, and goodness she seems to fit the profile. I am determined, now more than ever, to trust my gut. I will not stop fighting until I find our answer(s).
It’s a harrowing journey. I am bombarded daily by the squirrel-y behaviors of my little one. She pushes boundaries and shatters any semblance of control I believe a parent should have. Each day is a new start. Each night I recount the bonkers/bananas behaviors of the day. Sometimes I think somebody should be filming all of this - our house is a real life comedic sit-com! I just wish I had the script!
What I want to say is that this is really hard. I struggle. Navy struggles more. The process has been slow. Too slow. The side eye I get from strangers, friends, and even family - hurts. But I’m learning that I need the thickest of skin for this trek. (Hard for an empath, for sure. I tend to be tender!) I am not perfect, but I am a good Mom. I am not the reason for the outbursts. I am not to blame for the behavior. I am not crazy for seeing something others haven’t seen yet. I’m just - the expert. A true blue, Navy expert. I’m just waiting for the doctors, and the rest of the world, to catch up.
In the mean time, here’s a story I was recently sent. It means the world to me. Navy is my Holland.
Welcome to Holland
Written by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!” you say. “What do you mean, Holland?” I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”
The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.