So my baby is blind... Now what!

When I first discovered Liam was blind, my heart broke. Here was this beautiful baby boy who would never be able to see his own beauty, or even the faces of his parents and siblings. I admit to being depressed, extremely depressed, with a dash of suicidal thrown in…but I knew I couldn’t stay that way forever – and I WANTED to get better. It was a long road to recovery (with many dark, very dark days), but I’m happy to say I’ve made it!!! I remember thinking, “I will never again wake up happy, N E V E R”. I believed that every morning the first thought to enter my mind would be, “OMG Liam is Blind”, followed by a devastating sadness in my heart and weight on my chest – the weight of a heavy burden that I would carry on my shoulders for the rest of the day, the rest of my life. A few months after Liam’s diagnosis, I connected with another mom of a visually impaired girl who was now 9 years old. She assured me that one day, I would indeed wake up and the first thought to enter my head as I opened my eyes WOULD NOT be, “OMG Liam is blind”. Of course even though I agreed with her as we spoke, I didn’t believe a word she said. But you know what! …she was RIGHT (and is a fellow Newfoundlander to boot!)

Liam looking oh so cute! Summer 2010

Because of Liam’s blindness, he is experiencing some physical delays. He didn’t roll over until he was between 9-12 months old (or sometime in there - this was still during my denial/depressed/semi-suicidal stage so the details are a bit hazy), he was ‘tied up with pretty scarfs’ until 12 months to be able to sit on his own without folding in half – face directly over feet position, and still can’t hold his own bottle/sippy/cup (give me strength). He is now 18 months old and does not crawl or walk (which in some strange way could be viewed as a positive!).

But here’s what he CAN do! We’ve taught him some ‘Baby Sign Language’ (which just AMAZES so many people...’HOW do you show him’, I’m always asked. We physically put his hands in the position over and over - and eventually, he gets it! I know, CRAZY!). To date, he signs for “more”, “all done”, “thank you”, and “play”. He says “Momma”, “Dada” which actually sounds like “a-a”, “more” and “milk” which sound the same ...”muh”. He has mastered getting into a standing position from a seated position, and will eat just about any food you place in front of him – albeit with his fingers – he is not a fan of ‘the utensil‘ yet, but that’ll come. He splashes the water out of every bath he takes, is wearing the wood from his rocking horse, loves ANY genre of music – as long as there are no commercials or long pauses in between tracks, blows the BEST air kisses on command and can melt a heart in an instant! Liam is a HAPPY and HEALTHY baby who loves to laugh and play and doesn’t know that he is different. I am so thankful for that.

1. Bouncing away in his jolly jumper, 10months old.
2. Pouting...but looking oh so cute! 12 months old.
3. Swinging in the backyard, loving the motion, the wind, the sun! 14 months old

I can’t explain what it meant to me to hear--for the first time--positive things about blindness and about what Liam would accomplish. Somewhere I came across these words of wisdom:

    “The real problem of blindness is not the loss of eyesight. The real problem is the misunderstanding and lack of information that exists. If a blind person has proper training and opportunity, blindness can be reduced to a physical nuisance.”

Liam STANDING at the bath!
Mommy and Lukas are thrilled! Feb. 2011

OMG how this baby
LOVES his baths!

I think the most important thing is not to make assumptions. Blindness affects HOW a child learns, not WHAT he can learn. He will learn differently, but he will learn.

So far, having a blind child is not much different than having a sighted child. Here are some of the things I’ve learned and read about raising a blind child:

1. At times, loud noises can be disruptive and overwhelming because of sensitive hearing. Kids may need to be removed from a noisy situation.

2. Do NOT touch their hands. They are their eyes.

3. Do not just give or take away a toy. They can develop Fairy Godmother syndrome. They believe that things just magically appear and disappear and they have no control over it. Instead, make a noise with the toy off to the side. Let the child hear and find that toy themself, tell them if you are taking or placing a toy for them, and use directional cues, “Liam, your rattle is on your left side/in front of you/behind you”.

4. Textures are very important. Let them feel anything and everything.

5. Explain everything. Tell your child about the colour, texture, taste, temperature. I talk to Liam constantly – I’m actually used to it now! Another tip from a mom told me it would become ‘second-nature’ and it has!

6. Music is a life saver. Music can calm or excite. It is also good for developing the brain and fostering a love of music. Many blind people are amazing musicians...

7. A positive attitude is very important. Children can pick up on attitudes even before they can talk. Do not think that because your child is blind they cannot live an adventurous life. Believe that anything is possible and they will too. Don’t make them afraid to experience life.

8. Treat them like any other child. Do not pamper them or do things for them because you feel sorry for them or think they can’t do it.

9. It’s never too early for braille. Just because they are young, doesn’t mean they can’t learn. Let them feel the braille and get used to it. It will help when they are old enough to start learning to read. A sighted child sees print everywhere starting from infancy – even though they don’t understand it for years. Expose your visually impaired child to Braille at a very young age – we label EVERYTHING with Braille – this was a tip from the CNIB, they lent us a brailler which works like a labeller.

10. Rocking is normal. Liam usually rocks when he listens to music – however sometimes it can become a habit for blind children (not for Liam specifically) – and rocking for no apparent reason isn’t socially acceptable so something we will teach Liam is to not ‘rock for the sake of ‘rocking’. It will be a lesson in manners, like no elbows on the table and use please and thank you.

My hope is that I can share some of my knowledge and maybe help another parent who has just discovered or will discover their child is blind or visually impaired. I know I found a lot of comfort from speaking with moms and reading about other parent’s experiences and I hope that one day I can help another mom the way so many have helped me.

If you need a little smile today, check out Liam on YouTube.
You won’t be disappointed!