In Our World, Milestones are not Time Sensitive

When your baby is growing, one of the biggest factors that you’re constantly looking at is development. Babies learn so many things so quickly. We get to see their gross and fine motor skills, their social and emotional development, their speech and language changes, just to name a few. The changes that occur for a baby in their first year of life truly are incredible! 

What isn’t usually talked about, is what to do and how to feel if your child isn’t meeting the guideline for what is “typical” in the milestone department. I am constantly coming across infographics online, stating the months that babies should be achieving various developmental goals. Baby should roll over both ways between 4-5 months. Baby should rise up on his/her hands between 5-7 months. Baby should be sitting without support between 6-8 months. Baby should be walking between 11-15 months. These generalizations are necessary, and helpful as a guide. But I think we need to remember that they’re flexible. In fact, as soon as I knew that Arden’s development wasn’t going to be “typical,” I immediately thought, “He just needs an IPP! (Individualized Program Plan – a document created for children in school who have modified curriculum goals). Can you tell my teacher brain was still on? 

I quickly began to think of Arden’s development as a progression of smaller goals, and not as a list of skills that needed to be accomplished within a certain timeline. As a parent of a child with a disability, I can tell you right now, that you might as well just scroll on past and flat out ignore those infographics. Changes might not occur when expected for a child with a disability (or any child for that matter), and that’s okay. Every age that Arden has achieved a milestone at has been the right age for him. He doesn’t fit what is “typical” for milestones, but his first experiences as a baby also don’t fit with what is typical. Arden has experienced more in his first 10 months than most people experience in a lifetime. He’s incredibly resilient, and he has continually shown that after each bump in the road, he will pick up right where he left off and keep trying.

At 4 months, Arden had fully learned to hold his head up on his own. It took this long, because from 0-3 months he was intubated and had to remain laying down all the times, with changes in position provided by our nurses and respiratory therapists. Any time I wanted to hold him, he had to be carefully placed in my arms and his endotracheal tube had to be taped or clipped to my body so that it didn’t move. This wasn’t at all conducive to sitting up and progressing in gross motor skills.

Arden didn’t really learn to reach for toys until around 5 months of age. Up until that point, his hands still had relatively limited range of motion. He was wearing splints on and off every 2 hours, and his muscles were gaining strength after being relatively inactive for a long period of time in utero. They still are! It is incredible what his hands, wrists, elbows and shoulders have achieved. Where before, his shoulders could not flex upward past 90 degrees, now we can lift them up to put on his shirts. Where he used to just bat his hands at toys, now he controls them purposefully with his fingers. It’s important for us to consider that while most children are born with full range of motion, he had to work extra hard to achieve the range that is required to participate in the activities that he can now. 

Arden still doesn’t do tummy time independently. We regularly practice putting him on his tummy with various supports for his trach, his spine and the limited range he has with his upper and lower limbs. But he hates it. It’s so hard for him, and we don’t know when/if he’ll be able to do it independently, and that’s okay. We keep working on it every day, and it’s part of his progression of goals.

As far as sitting goes, being able to completely roll over and push up from the arms are both prequels to sitting. In addition to not quite having those skills yet, Arden also has to work against his scoliosis when he’s sitting. So he needs more support, and again, that’s okay. He has a tumbleform chair that he uses because a bumbo doesn’t give him the support that his spine needs. When he’s in his exer-saucer, we provide him extra support with blankets and cushions to help him sit in midline. When we’re holding him, we make sure that he sits in a way that corrects the curve and rotation that his spine naturally relaxes into. While he has always been hypotonic centrally, he is getting stronger every day. Just yesterday our nurse commented that Arden is beginning to use his strength to correct his own seated position. That’s amazing!

In terms of crawling, standing, and walking go, we don’t know when or if Arden will be able to achieve those skills. There are still a lot of unknowns, and he may require many procedures and/or surgeries to help him work towards ambulation. There are a lot of other goals that Arden is working towards before crawling and walking will come into play, and again, that’s okay. 

As a family, we try to work towards s.m.a.r.t. goals (goals that are specific, measurable, attainable, relevant and time-bound). Luckily, as Brodi is a physiotherapist, and I’m a teacher, this is not a foreign concept to either of us. However, we try not to focus on the “time-bound” portion of his goals. Arden’s goals right now are not time bound because what’s important is that he is moving forward with specific goals that are attainable for him and relevant to the natural developmental progression. As long as he is making small gains every day, we’re happy! 

Part of Arden’s success so far is also driven by joy, love, and comfort. Since we arrived home on December 15, 2020, Arden’s development has catapulted compared to how it was progressing while we were still in the hospital. Anyone who has ever been a parent to, or worked with a NICU baby will say the same thing. The biggest, most exciting changes in development will happen as soon as they go home. Home is a place where comfort and security is felt. The support and love that children feel at home cannot be replicated anywhere else. I believe it’s so important to capitalize on this concept in order to help your babes achieve their goals. Knowing that they’re in their comfort zone, surrounded by their biggest cheerleaders, is enough to make most littles try all kinds of things!

The future is uncertain, but one thing we do know, is that Arden will achieve goals when they are right for him. I decided a long time ago, that no matter what, I would never compare our child to anyone else’s. It can be hard, because let me tell you, there were A LOT of babies born within the same month as Arden. I regularly see these children doing all kinds of amazing things on social media, or in pictures sent to me by friends. Their parents proudly show off their milestones, and delight in the changes that have occurred in less than a year. And they should! What an incredible miracle it is to watch your greatest gift grow and change. But I’m not placing Arden’s development on any sort of timeline. As long as he is progressing at his own pace, we will delight in each and every milestone, regardless of when it is achieved.

XO, Rayel