Looking, Reaching, Touching & Smiling – The Unseen Skills in Toddlers

Before Paige, I never imagined that patients with syndromes were different when children. Or should I say, I never imagined a baby with disability. My imagination never got past what I saw. With neuro-typical people, we imagine them as children – they fit the normal standard. They met all of the normal standards, and that can fit in each of our brains. With those with different abilities – with diseases that limit them, we have no idea what they were like as children. It can’t fit inside our box.

Paige’s diagnosis of Alternating Hemiplegia of Childhood changed my whole world view. It changed how I looked at others – it made me more aware of those that may have neurological disorders that others may not notice. I see things now, the traits in “normal” children that my daughter doesn’t have. I now know what a “disabled” or “slow” baby looks like. So I want to share an example with you, so maybe you can understand the easy way – and pass it along to someone else.

Looking

Typical children make eye contact and follow movements around 3 months. It’s something I never experienced until Paige was around a year old – she could look at me, sure, but following me around the room was foreign to her. Just keeping her eyes stable takes a lot out of her – it was amazing when she really looked at me. Looking – it’s something that makes a baby just a little bit different.

Reaching

I recently shared a post about this – my girl has finally learned to actively reach for objects she wants. Reaching for something is also learned at a young age, typically around 3 months, and reaching with two hands is even more complex – that is learned around 6 months. For Paigey, she has just begun reaching actively with one hand – such a goal to accomplish! Reaching requires so many skills, such as looking and realizing she wants it. Then, the hand-eye coordination of moving her arm towards the object and focusing long enough to reach. Reaching and looking – that is a difficult thing for Paige. It’s something she maybe does in public, but only if it’s something she really wants. She’s never reached for people yet, since that requires a lot of cognition and emotional connection – but she now reaches for things, with one hand. Reaching, it’s that little something that makes her different. 

Touching

As a first time mom, rejoicing over touching or grabbing things wasn’t in my plan. I was naive before I had Paige – I think I honestly thought babies just “do” that, they don’t learn it. Oh how I was wrong! The muscles, coordination, and cognitive ability to touch or grab something simply amazes me. The way Paige grabs items after a “severe episode” or how she shakes when she’s paralyzed on one side, simply shows me the strength it takes all of us to even type, like I’m doing right now. For Paige, she didn’t grab and play with things other than her blanket for almost a year. She couldn’t connect the dots. It has taken her a while to want to handle and play with things, and I think that’s why she’s so content with the smallest of toys. You give her a string and she’s happy. The light toys that fit in her fingers, those are her favorite. Although she is slow in that area, she is so meticulously observant when she finally does grab that toy. What a blessing for her! But touching, my friends – it’s a skill that she has worked hard to learn.

Smiling

I remember seeing Paige laugh for the first time. It was 3 days after she got the trach. It made me cry. She played with me with her eyes, and she thought the beeping on the ventilator was funny. Her laugh – even without her voice- made every tear and sadness in me disappear. Paige’s smile has brought me out of the deepest holes – it has encouraged me to take One More Step. That smile is so important to me, because Paige figured it out – she connected that being with mama was a happy thing, and her body reacted with a smile. It isn’t an easy thing to make that connection, and a lot of neurodivergent children may not be able to do it. Smiling – having an outward show of joy – it is a strength we tend to forget about. Paige doesn’t smile a lot when we take her out. It is something she only does when she knows she is safe and her brain can handle it. She has to know her environment. Very often I want people to see her smile, especially those who haven’t met her – but especially if we are not home, she tends to use that mental energy to keep her body working, to rest amidst a new and different kind of stimulus. It takes a lot for her to smile. I am honored that she smiles and feel safe in our home – what a blessing that is!

Putting it All Together

I was recently in a public place with Paige. I saw a 3 month old sitting at table with a toy in front of him. His eyes sparkled, his arms instantly reached, and he giggled with a big smile as he grabbed the toy in front of him. In my heart, I hurt. I hurt because that took a lot of mental skill and strength, and my mind immediately went to my girl, who didn’t have that strength for a long time, and it still takes her time to accomplish those things.

Looking, reaching, touching, and smiling – that is an easy way to understand what it means to have a “special needs” baby. No, they may not slur in their speech. They may not be old enough to not be able to create a full sentence or draw their name. Those are the obvious things. Yet looking, reaching, touching, and smiling – that’s something that takes a lot of mental energy for my girl. One little gene has ruined that for her – that little simple thing. Yet as a mama, I see how it’s made her strong – I see the joy when she puts it all together. 

Now, maybe, you can see that joy too.