Yes they are. Some days are just hard. Fraking hard. I’m just fresh off a meltdown (both me and the kid) so I might not even post this once I’ve calmed down and reread the words. I’ve never written about this or talked about this. Not once. As I think on it I find it surprising since it’s such a huge part of my life and my family’s life.
I have a special needs kid.
And it’s hard. Really hard.
Like scream to the heavens, kick the wall and drop to my knees crying hard.
The journey we’ve been on since we found out has been a whirlwind to say the least. I still remember, with crystal clarity, the day we were told Monkey Man (which is how to refer online to him to maintain his privacy) had Optic Nerve Hypoplasia. The doctor warned us not to google it. And of course, we didn’t listen. Go ahead… google it. I did. Literally five seconds after getting home.
He was four months old at the time so we had NO idea what was in store for us. We didn’t know how bad it was going to be or if we would be one of the “lucky” families and have a mild case on our hands.
What is Optic Nerve Hypoplasia?
Optic Nerve Hypoplasia, or OHN is currently the leading cause of visual impairment and blindness. It is a congenital condition (meaning he was born with it) in which the optic nerve (the connection from the brain to the eye) is underdeveloped. This results in visual impairment. It is a spectrum disorder that involves the brain so the implications for children with this condition are far reaching (including developmental delays, autistic tendencies, hormone deficiencies, sensory issues etc). If you are interested in learning more I highly recommend checking out this resource and visiting The Children’s Hospital for Los Angeles website on the condition. Dr. Mark Borchert and his team are doing amazing research into this rare and complicated condition.
So instead of discussing the details of ONH (I think I’d need a textbook), I will talk about what areas impact my sons’ life.
While Monkey Man is visually impaired he does indeed have sight and for this we are eternally grateful. His optimal viewing distance (how he sees best) is about 2 metres in front of him. This means to the casual observer it may look like he sees quite well. His visual acuity for this range is about 20/80. So he can read 20-22 point font if he’s really close (nose in book close), he can play with his toys and find his parents if they are in the same room. Past two metres his vision worsens and it’s estimated that his current distance visual acuity is about 20/200 (which is legally blind). So everything in the distance is blurry. In his words, forests are “all green” and busy places are just blurs of colour where people “move too fast”.
His depth perception is also effected so things like playgrounds and stairs are a constant challenge. Once he gets to know an area he can memorize things very well which is quite helpful. He also has something called nystagmus. In very basic terms it means his eyes shake, both horizontally and vertically (although horizontal is more common for him). The further away the object is he’s trying to focus on is, the worse it gets. Fluorescent lights, fatigue, being emotionally upset and fevers all make it worse.
Here’s where things get a little complicated so stick with me! ONH often effects hormone secretion and this has to do with shared real estate. In our brain the pituitary gland is responsible for secreting most of our body’s hormones and it happens to live right next door to the optic nerves. So in our son’s case, when his optic nerves were dying back (around 8-12 weeks gestation), it affected the development of his pituitary gland. This puts him at risk of many hormone deficiencies. Currently he only has one; growth hormone deficiency. He was officially diagnosed at 2 years and we’ve been on growth hormone therapy since July of 2015. Thankfully it is working quite well and he’s finally gaining on his peers! Soon he will be of “normal” height (he stopped growing for almost 2 years and was -32nd percentile on the growth charts!)
We also deal with sensory issues and autistic tendencies, but I will save those stories for another day. Suffice it to say life is challenging some days!
Knee Deep in Doctors
I literally feel like I’m knee deep in doctors! It took a very long time for me to come to grips with the reality of the situation, both as a parent and a herbalist. My son’s birth DID NOT go as we had hoped and after 33 very long hours of labour I ended up having an emergent cesarean section. This alone was hard enough to deal with (and still is hard to deal with truth be told). But then I was tossed back into the medical world once again. My son has a condition that has no cure. It cannot be treated by natural means (trust me I looked, researched, emailed everyone I could think of and prayed). For a long time I felt my training and beliefs had betrayed me.
Before meeting my son I naively believed that there was nothing herbs couldn’t tackle or at the very least, help with. I did everything right. I did two detoxes prior to becoming pregnant, I was being treated with herbs by my teacher and I had a very healthy pregnancy (exercised, ate right, didn’t smoke, drink or do drugs). I try not to think about “what went wrong” because they still don’t know what causes ONH.
As difficult as this has been, this journey has given me a healthy appreciation for the world of modern medicine. And while I don’t turn to it for every bump, sniffle or infection, I am grateful for it’s presence in my son’s life. After 3 years I am finally starting to reach a place a balance and understanding.
No One Gets It
The hardest part of having a special needs kid, and one with a rare condition to boot, is the isolation. Thank goodness for Facebook groups or else I would be totally alone. Other parents don’t understand how hard something like potty training is (or in our case almost impossible due to sensory issues) or getting him to try a new food. They don’t know why I follow him so closely at a playground or always stay within 2 metres of him when we’re somewhere new. They don’t understand why he wants to be worn (even though he’s over 3 years old) when we’re in a crowded place. They don’t understand why he still doesn’t sleep through the night or why the smallest change in routine results in a massive emotional meltdown. “Oh he’ll learn” or “just force him” are typical responses I get.
“What do you mean you can’t come out? Just get a baby sitter.” What I wouldn’t give for the ability to leave him at grandma and grandpa’s for a few days!
The worst part are the whispers or ignorant comments. I still remember the lady at the early years centre who said we were “lucky” because we didn’t have to buy him clothes that often because he wasn’t growing. Ummm… I’d gladly take a hit to budget if it meant he could grow on his own. I also remember that lady who called her husband over to the produce isle to look at the baby with the “googly cookie monster eyes”. I shit you not.
Many Silver Linings
Yes it’s hard. Yes I cry and sometimes I scream. But there are blessings. Oh so many blessings! My kiddo is smart as a whip. He’s quite gifted and is already readying books at a grade one level. He has the most incredible memory that I have ever witnessed. He LOVES music and our dance parties are often the highlight of my day. He loves to be homeschooled (preschool) and gobbles up information like most kids do cookies. You know I taught him about photosynthesis this week? Yup, that’s right. He’s three and he actually understands that leaves make food for trees and how. He has an amazing imagination and the kindest soul. His empathy is a true gift and his hugs are the best.
While I wish he would be able to drive one day or see a sunset the way I do, I wouldn’t change him for anything in the world. He is my Monkey Man and I love him. To the moon and back.
Thank you. Thank you for letting me use my blog as a tool for emotional healing on a bad day. And thank you for taking the time to learn about the most amazing person I’ve ever met.