The Milestones

Gosh, I remember being a new mother. I had absolutely no idea what I was doing, how to do it, and if it was even right?! Too many people had opinions, whether you wanted it or not, and those same people also made you feel so small while you were trying to figure out who you are or who you wanted to be as a mother, because their way was the only way. As if becoming a mother wasn’t overwhelming enough but having someone tell you how to be, especially when you don’t agree with it, is very confusing. This happened to me in person and in online mum group forums. Those mum groups can be really toxic. You want to relate and connect with people that have been or are in your position, they’ve been there relatively recently, right? Instead, you can be met with unsolicited opinions completely unrelated to the question you asked because someone thinks they know better or are doing better at being a parent than you or so it seems. All you’re trying to do is find the answers to whatever problem is going on, perceived or otherwise, but it’s compounded by not knowing who to listen to or putting the advice into practice and not turning out to be the miracle solution it was made out to be. Yeah, these forums can unintentionally make you feel awful about the parent you are if you’re not parenting the way everyone else is or your child isn’t accepting the same sleep protocols, eating the same lunchboxes, and meeting the same milestones at the stages they are meant to be.

Would this have helped? I mean, kids develop in their own time, MOST OF THE TIME. Let’s not overlook that. I’ve known children that haven’t started walking until they were 18 months, but could this be due to being a bit heavier and needing to learn how to hold their weight? Likely, maybe? I’ve also known slight children that haven’t walked until over 12 months, is this unusual? Are they lazy? Not according to the Centers for Disease Control and Prevention (CDC). If I look back through Nasir’s Plunket book, all I see is that he was developing well, looking well, and presenting well. There is a form about his development at 5.5 months questioning if I had any concerns, I can’t remember what this was in relation to, but it seems as though I had no concerns. At that time. During pregnancy and new motherhood with my first born, I would obsessively google the development of Nasir, where he should be compared to where he was, and he was always meeting expectations. That is, until I noticed he wasn’t clapping at the time he was supposed to. If I’m honest with myself, I did my best to bury how I felt about this, never revisited it, and focused on all the things he was doing. The BIG things. The big things meaning all the Gross Motor skills he was achieving.

When Nasir was a month or so old, he was wriggling across the couch, his legs and neck were strong enough to help him move. I thought this was a sign that he was “advanced” when it came to the first-year milestones. I can’t be sure if I shared because I was proud or showing off, maybe both, but I have always thought he is pretty damn special. So, within the first year, he was meeting most the Language, Motor, Social/Emotional, and Cognitive skills with or without my love goggles on.

During the CDS assessment that led to Nasir’s GDD diagnosis, Nasir was tested on the five areas of development and where he couldn’t be tested, I was asked to fill in the blanks as to when he achieved important milestones. I was questioned about:

Yep, meeting them all, hence why I was only concerned about his speech because I have no idea what goes through the head of a baby and whether or not they’re really supposed to be listening or following instructions. Like I said, new, naive mum, no support, no guidance… surviving definitely NOT thriving. I didn’t make the connection that it was all simply language, I had been focusing on the wrong things, his speech, and didn’t know any better. In saying all of this, it’s so much easier to look back and connect the dots. Hindsight is a beautiful thing. We had told the doctor we were using a SLT and asked if this would fix the delay, alas no definites can ever be given until they know more, and they can’t know more until it is appropriate to test, or intervention therapies have been implemented.

Other questions we had been asked was if Nasir displayed any interesting or unusual behaviours, not being prepared for what this assessment entailed, I said no. However, there are many idiosyncrasies people have that are considered weird to some and to others completely normal and the more I get to know different people and find out their habits and what makes them tick, I’ve settled on that Nasir has very normal behaviour, it just depends on who you’re talking to… I mean, he gets A LOT from me, and I often wonder if I’ve messed him up, knowing how much of a mess my mind is and the things that annoy me too easily. Does this help in a setting where we’re discussing potential diagnosis? No, but this blog isn’t called ‘Nasir is disabled and therefore limited by it’! There is plenty that can be absolutely normalised without having to be connected to perceived limitations. But we are talking about milestones and reflecting on whether or not there were signs that could have prompted us to get the support ball rolling sooner.

Nasir was walking by one year old. If you ask Supry, it’s because he gave him an ultimatum; walk before you’re one or you’re moving out! Naturally, Nasir took his first steps the day before his first birthday and before he was due to start daycare which meant we wouldn’t miss our first baby’s first steps. We were super proud of him, so what was the harm in him walking on his toes most of the time? Hmm…

Remember the conversation I had with the Daycare Center Manager? During this discussion, I tried to relay all the actions I was implementing to support and encourage Nasir’s language. I would sing songs like ‘A Dream Is A Wish Your Heart Makes’ or ‘Over The Rainbow’ which he really enjoyed and was signing the parts he knew, which I would then let him carry on until he stopped or needed help. We would also read his favourite books together which I would allow him to choose and sometimes we would read three as well as sing the songs together. It wasn’t until I had read that children that were struggling with talking would more than likely benefit more by talking about what was happening on the page rather than just reading the words to them, that he started really picking up new words. This aside, he LOVED reading and being interactive which was having the most positive impacts like identifying words. I told the daycare Manager this and she deflated me as quickly as she angered me by approaching me in the middle of the classroom. How did she deflate me? Something along the lines of “Oh, he’s not actually picking up anything, it’s called Echolalia. He’s only repeating what you’ve told him.” It’s not true! It’s not!! I would ask him what the word or the picture was, and he would correctly identify it. It just could not be true. But I’m not the expert, what would I know? I’m just a damn PROUD mother that my gibberish babbling son was finally developing language. I walked away feeling all the negative emotions toward this woman. It felt like his hard work was being dismissed or diminished by the fact that it was just not enough.

These were MILESTONES to me. Progress. He was doing so well. After all the questioning where he should be. You know what, it also felt like as a parent I wasn’t doing enough by my child. My efforts, late nights (by a child’s standard… and let’s face it, I was pregnant at the time, so also by pregnant standards), and guilt about whether or not I was doing enough was just not enough.

Back to when I was saying I didn’t know it was all connected… Supry and I like to think we built great relationships with most of the daycare teachers or staff. We spend time talking to them about them, us, and our kids. We’ve been at the same center since we started Nasir there and have only questioned moving the kids once, but this was only due to Nasir starting school in a completely different area to the center. I digress. All parents are asked to fill out goals and aspirations for their children; our goals are always to raise kind and compassionate kids but kids who know how to advocate for themselves. However, as Nasir was at the terminal end of daycare and soon to be starting school which meant we wanted him to identify and write his name, but this would have to start with just drawing shapes in general and Nasir didn’t really have much interest in exploring that side to him. He was more interested in playing with his cars, lining them up, and pretending to be a… car.

Things couldn’t be that bad. He was learning to READ! Can you believe it? Not talking properly but he was reading words, well identifying them without prompt. But after being told the way he was learning wasn’t actually learning, this made me feel really insecure about how to help him in future and actually dulled getting too excited about his development. I didn’t want to read too much into it and thought there was only one way to learn, although I wasn’t actually sure which way that was but Nasir sure as heck wasn’t learning the way he was supposed to… But he WAS learning, regardless of the path he was taking in and processing information then relaying it in the ways he knew how. This is good, right?! I never felt like it was ok for him to be learning the way he does until he started school and had the full support of the teaching staff which helped him hit new milestones.

One of the most common phrases used in our house is ‘DID YOU HEAR/SEE THAT?!’. Going through the journey so far, we’ve come to notice the absolute small things that happen, only, they’re not small, they’re actually so big and it is everything. Every new word he’s spoken or pronounced, word he’s read, coherent sentences he’s put together, COMPLETE sentences at that, understanding simple instructions without getting confused, and fine motor skill advancements. I cried the day he drew a person on our memory foam mat in the lounge. It was the first time I saw him draw anything that weren’t scribbles on a piece of paper. Man, the world of possibilities that could happen from here, and DID! He started writing his name! He knew the alphabet so well by this point and could identify his name but now had the shapes needed that form the letters to write his name. It just keeps getting clearer and clearer from there.

So many of these events were supposed to happen years ago and as unfair as it is, we have been through a lot of these moments with Rahim, already. Not that it makes it any less incredible, but I do think it makes us hyperaware of what we can be expecting. It would be interesting to know at what age Rahim is functioning as he has been talking in full sentences since he was two years old, walking at 9.5 months, and quite clever emotionally. Having two developmentally different boys has been quite an eye opener and redefined our approach to parenting with how we support them be the little humans they are. They do seem like they are on opposite ends of the spectrum sometimes but instead of looking at Nasir as a delayed kid or Rahim as clever, they are going at their own pace, meeting the milestones as they get to them and using whatever resources they have to get to them. If we were to compare them, when Nasir was 4 he seemed further along in his interest of Math, Science, and knowing the Alphabet than where Rahim is, but when we look at Rahim, as long as he isn’t shy, he is able to make better connections or relationships with people. Their memory retention is equally as remarkable as each other’s; Nasir uses it to learn while Rahim picks up a beat or lyrics to a song after listening ONCE!

The only time we really compared the boys to each other was before we knew what was going on with Nasir and in the early stages while we were getting our heads around what this now meant for him, for us as parents, and as a family. It was only due to noticing what Rahim was achieving and wondering why Nasir wasn’t quite there yet, these were ‘AHA!’ moments and it prompted further inner acknowledgement that we needed to push for help which led to me learning how to firmly advocate for our children, especially as there isn’t a whole lot of support for children that struggle or for the parents that are full time carers (and have their own lives to also deal with).

We’ve had a check-in with CDS to discuss how Nasir is going and we will have to see them again for referrals for further testing to identify the root cause, if there is one. If you had asked me if I was scared there could potentially be an underlying issue, back when I was initially told about Nasir’s diagnosis, I would have said HECK YES! I had so many questions and most of them were around his future and if he would have the opportunity to experience a great life without the fear of being treated like he’s different or a freak. Now, I’ve witnessed him grow into such a kind, friendly, and capable young man. He is making huge leaps in his development and I would say he’s meeting the milestones I was worried he wouldn’t meet. It’s hard to say things like hang in there, it gets better or just let the kids do what they can when they can because GDD looks different on everyone. We’ve tried to make our experience a positive one amongst the negative; and we’ve had a lot of negative stuff happen!

If there truly is something going on that needs addressing, then I’ll be glad because it exposes how we can really help support this amazing kid that LOVES to learn. Living in limbo of ‘He’s delayed…‘ can be frustrating but it’s completely overshadowed by the fact that Nasir is living his best life and kicking ass! However, if it is simply a delay, regardless of the DNA testing results, we’re happy with the pace of the progress he is moving at.

Until the next one,

Elysha