5 Years Old

Marco’s 5th birthday! I cannot believe my youngest little man is now 5 years old. Especially not my little Marco, my miracle baby, my sweet boy. So here we go with his update - and there is SO much to update.

Overall, he continues to be the happiest, most joyful and social boy around. People love to be near him and love to work with him. He truly makes life easier. I often joke that my special needs child is my easiest kid. Sure, we have a lot of therapies for him and we’re not sure how much support he’ll need as he gets older, but he’s medically healthy (thank goodness) and he’s so happy 98% of the time. When your child brings a huge smile to your face every time you interact with them, that is just such a blessing, and we are so lucky to have him in our world.

Developmentally, his curve continues to grow farther away from his peers. He is still learning, developing, growing - so we’re feeling great about that - but definitely at a much slower pace than those around him. Where I used to say he was about 6 months behind, then last year it was roughly 1.5 years, now he’s about 2 years behind. But still learning and improving, and that’s what matters, because it means that maybe one day he’ll be able to advance enough to be independent. Or maybe not. Only time will tell.

An update on his development:

Education:

He’s 5(!) so technically that means his Early Intervention / Intermediate Unit program is ending and we need to transition to the school system. I can’t picture him in Kindergarten, but we’re having him evaluated by the school district to see what can be offered. I seriously cannot believe we’re ready for this conversation. He is clearly not ready in so many ways, but in other ways he excels - so hopefully we’ll find a place where he can be challenged with peers rather than put in a play-based only environment.

Speech and Cognition:

Speech is the biggest delay for our boy. So many parents on the FB groups for chromosome differences stated that their child started to really talk around 4 years old. It gave me some hope, but I also didn’t want to get my hopes up too much because each one of these very unique differences presents in completely unpredictable ways. He is not speaking in the way a typical 5 year old would, but he is starting to be understood by people outside of our home. He responds to simple questions, he asks simple questions, tries so hard to be part of a conversation. Most things go over his head still, especially with peers who do not slow down for him. With adults who are catering to his differences, however, he is able to have full conversations. Some of his standard go to phrases include My name is Marco. What is your name? I am 4 (now 5!) My favorite color/book/food/song/etc. Is. Do you want to play? Come play with me. I want milk/toys/tv/etc. With peers he gets lost pretty quickly. He’ll start out great - do you want to play with me? Then they’ll say something like - sure, what do you want to play? And he’ll just look at them. So they’ll get bored and leave. His personality is so contagiously happy, however, that most older kids and adults are happy to play down to his level. And he loves playing with 2 or 3 year olds who are more aligned to his thinking. A big problem he has is that individual words are clear, but when he goes to say a sentence he drops the first and last sounds in every word so it all just jumbles together. In speech they are working on common phrases to practice over and over so that those are clear - such as “do you want to play with me?”

Beyond being understood, we wonder how much speech he is understanding. I think he is still grasping onto key words rather than a whole sentence. Such as, I’ll ask: who did you play with today? And he’ll think about it and say something like “playground’ or ‘gym class’. Meaning he heard “play” in a question and made an assumption. When that happens we just ask in a different way like What friends did you play with today? Or, what friends did you see? Then he’ll be able to rattle off a few names because he heard “friends”.

The delay in his thinking also prevents him from connecting to peers. You really have to wait with him. Give him 5 extra seconds to process and respond. Most kids will ask something like - can you give me the blue crayon? And will get frustrated when he takes 2-3 seconds to hear, process and respond. But he will, if given the time.

He wants so badly to be part of a conversation that he’ll chime in with something randomly connected if he hears a word he knows. People may be talking about what they want to eat at lunch, ordering from a menu, and he’ll chime in “i have cereal!” Which, we’ll translate for him - yes, you did have cereal this morning. What do you want for lunch?

All that to say - I’ve been really excited lately with how much he’s able to engage with people. It’s really blossomed over the past couple of months. He’s confidently talking to strangers, he answers the standard questions if given enough time to respond, he is trying so hard to be social with everyone. 

Reading and Memorization

This continues to be his biggest strength aside from his joyful personality. He has always been great with his letters and numbers - shocks everyone with the fact that he knew all his letters, upper and lower, by 2 years old and can count to 50 or 60 or so. He is also one of the few of his peers that can recognize numbers above 10. He was well ahead of his peers reading everyone’s names, not just his own. And now he can even read some simple books! He is reading by sight, not by sounding out, so it’s limited to books/words he knows. But he is not just memorizing a story and repeating, he actually knows the words. I started to list them out the other day, but they keep growing rapidly with every new book we read. He’s really into Pete the Cat, so he knows words like Pete, Cat, Bob, Mom, Dad, School, Play, Want, Go, To, The, A, And, See, Dog, Train, Trip, Up, etc. I would say around 50 words. To test him, I’ll write a random sentence: Mama and Marco are going to see dogs and cats. Marco wants a cat. Mama likes dogs. Etc. and he’ll be able to read it. It is truly impressive. A lot of kindergarteners struggle with their letters, let alone reading. So if we just look at that - he’s average with his peers and ready for K. But the big question is how much is he truly comprehending.

Fine and Gross Motor

Gross motor he’s doing really well. While not on the same level as his peers, he is developing beautifully and I have no concerns here. I said this last year too. I’m OK with the fact that he may never have the hand eye coordination for sports - many people don’t. He jumps, climbs, walks up and down stairs, runs. All the things he needs to be successful in life. We are working on balancing with him (balance beams, stepping stones, etc.) as this will help his overall steadiness in walking and physical activity. He can now get dressed and undressed fully on his own - I think we’re set for success.

Fine motor is a bit different. They are starting to work on writing letters and it is very hard for him. He can make a legible M, but that’s about it. I think he’ll get there with time and a lot of practice, but it’s going to be very slow going. Same with coloring - he still does fisted grasp scribbles, but he’s starting to learn the proper grasp and they are working on more refined coloring. Cutting paper, same thing - he can cut, but not in a steady line or any kind of shape. These are things that don’t seem serious, but when it comes to daily life they are truly needed. Especially if he plans to join a mainstream classroom. If you can’t write or draw or cut - you aren’t able to communicate your knowledge aside from verbally, which let’s remember, is also tough for him. 

Potty training

Throwing this in here because it has been an ongoing struggle for two years and I think we finally are making progress! Just this past month we started trying again, maybe our 5th go at it, and I think it’s actually sticking this time. He has pee locked down - we’ve only had one accident in the past month and that’s only because he was so absorbed in his tablet. He can hold it so well I’m not even concerned on long trips. We drove 6 hours home from Pittsburgh with underwear and he was great. When we stopped, he’d pee with his brothers and had no problems. He has even been dry 3 or 4 nights. We’re not ready to try night time training, but I think he’ll be able to do it. Our problem is poop. The dreaded poop. He refuses to go in the potty. He’ll hide, run away, hold it in. We basically wait for a diaper or he’ll just poop in his underwear. When I see him doing the squat he’ll run away from me or suck it back in. I even tried an enema after 4 days of no BMs - locked him in the bathroom with me - he was circling, kept sitting but doing nothing, I thought I had him. But after 30 minutes I had to go to salsa class and gave up and put a diaper on. The second the diaper was on he took the largest dump. Oh well. I’m not going back to diapers. He can keep pooping in his pants for all I care. We’ll eventually get him. Unfortunately, because he’s not fully trained, he has to wear pull ups at school. Not sure how that’s handled in Kindergarten. I’m hoping we’ll get it sorted by September. Huge improvement though!

And that’s it for my 5 year old! Can’t wait to see what the next year brings.