4 Years Old!

Happy 4th Birthday Marco!

Our sweet warrior is four years old today! Like every year, the passage of a milestone brings a mixture of joy and sadness as we inevitably compare him to a typical 4 year old. This year, however, his development has been so extraordinary and the absolute joy he brings us everyday counter balances any minor twinges of sadness we may feel.

He is honestly the light of our lives most days. We love our other kids, of course, but Marco is still in the wonder-full stage of development, where everything is new and exciting. His energetic approach to life is contagious and helps us all so much as a family to get through tough days together. 

His personality is his greatest super power, and will help him so much in a world where he is different and he may not fit into the typical lanes of life. He says hi to everyone, gives them a high five or a pound, he runs to greet those he knows and gives them big hugs, he happily waves bye bye to me and blows me kisses when I drop him off at school. He shows compassion to others when they cry - but in that toddler way, where they aren’t sure what to do, but slowly gravitate toward the crier and stand there in solidarity. To know him is to love him and therefore is to help him when he struggles. It gives me such comfort to know that those who are taking care of him on a daily basis truly love him and are all looking out for him.

Enough gushing - here’s an update on his progress:

Medical

We are beyond fortunate that our little “warrior (Marco) who endures (Dante)” has zero medical complications from his super preemie birth or his rare genetic condition! It could have been horrible. 

No brain bleeds and complications from early birth

Perfect eyesight - when preemies commonly need glasses

Perfect hearing

Breathing hasn’t given us any issues now that his lungs are larger - no ER visits all winter

No strange complications from genetics such as bleeding, heart failures, eating complications, etc.

In fact, we rarely need to go see doctors for him - no more so than my other kids.

That’s not to say we are in the clear. Two things we’ve been told to watch out for, as it is very common for any person with a chromosomal difference, are Autism and Seizures. So far, we’ve seen no indications of autism except perhaps for his genius level grasping of letters, numbers and counting (more on that below). He is social, makes eye contact, doesn’t have twitches, etc. Seizures still scare the crap out of me. Many parents in my support groups say that seizures came on later in life (4 or 5 years old). I’m hopeful that, like in all things, Marco will overcome these odds as well and skate through life without any major complications.

Development

Marco has 5-6 therapies a week: PT, OT, Speech x 3-4

Physically he is doing well - definitely behind his peers, but not in a way that hinders his play or involvement in life. He can walk, climb, jump, do stairs - all the basics. He runs funny and falls often and can’t jump forward or high - but I’m ok with all of that. He won’t be able to keep up with typical 4 year olds (i.e. tee ball or soccer) but he finds such joy in being outside and playing with people that it really doesn’t matter. Lots of people are uncoordinated in life, he’ll just be one of those people.

Occupationally they are working on fine motor skills like writing and coloring. He is still doing the crazy scribbling coloring vs. the more purposeful lines, circles, etc. that 4 year olds can do. Typical 4 year olds are practicing pre-writing skills like tracing, cutting. And while he is no where close to being able to do that, he knows his letters so well that by the time the physical side catches up I think he’ll be off to the races. They are also working on life skills like getting dressed. We’re working on that a lot at home too as we gear up for potty training. He is able to take his pants and diaper off, shirt needs help. He can put his pants on (struggles, but successful), needs help with his shirt.

Potty training has been tough. My other two kids were potty trained by 2.5 (not counting over night). They say to get it done before the child has a sense of self - before they realize they can say no. We waited with Marco because I didn’t think he was ready - I mean he was just learning to walk at 2 years old, I couldn’t imagine potty training! But by the time we tried to do it… he was clearly passed the point of blind compliance. He knows where to pee/poop, he knows what to do when he sits, he loves watching us, he loves talking about it, but he refuses to actually do it. We had him pant-less for months in our house, and he would just wait it out. Hold in everything until nap or bedtime when we put the diaper on. Kid didn't poop for days on end. We bought him Thomas the Train underwear and he was so excited to pull it out and wear it - but when I told him he could only wear it if he took off his diaper and went in the potty, he looked sadly at the underwear and placed it back in the drawer. Yay that he understood that so clearly, boo that it didn't win him over. We’re going to try again this spring when we can wear less clothes.

Comprehension is a tough one. Because he can’t really speak yet - more on that below - we aren’t sure how much he is absorbing or understanding. We think he understands key words vs. the full sentence. For instance - we can say “The ball is under the chair” and he’ll hear “ball” “under” “chair” and know where to go. But if we say “Where is the ball?” or “Is the ball under the chair or under the table?” he’ll just stand there and not react. Or he’ll repeat us. Repeating is common for him - and while it’s great that he’s practicing words, it’s a sign that he doesn’t understand what we’re saying. Another example is asking him “What is your name?” vs. “Your name is ____”. Or “What color is the sky?” vs. “The sky is the color ____”. He can finish a sentence with context clues, but he can’t understand or respond to an open ended question. It’s an area that still gives me worry and makes us unsure if he’ll be able to live independently. He is so smart in so many ways, but we’re not sure if these basic understanding skills will develop in time or if it is a block that he’ll always have. He has continuously shown us how much he can grow and learn, so I think he’ll be able to overcome this as well.

Speech - the big one. His speech has improved SO much this year, to the point where he is almost understandable. Stu and I can understand what he wants 90% of the time. Sometimes he’ll say something and we’ll be completely confused or lost. In those cases he either moves on or if he really wants it he’ll try other methods (pointing, using his talking device/AAC, dragging me somewhere). Most of it is in context - so he’ll say “ah-buh”, which means nothing - but while he’s doing marble run and holding a marble I can understand that means “mar-ble”. We’re working on two things with him: clarity of words and understanding of words. 

Clarity of words we’re practicing adding the middle or final sounds of words. Milk = muh = we correct him and say Mi-el-K. We over emphasize syllables to help him hear them, then ask him to repeat. So now he will be pretty consistent saying “muh-k” for milk. His Speech therapist thinks some of the common words he says are just practiced and he’s used to saying them wrong, so if we can make him repeat them right, like “muh-k” then he’ll start to use it on his own and be more understandable. I always knew what “muh” was in context, especially as he would also do the sign for it - but it’s not about me understanding, it’s about the world understanding.

Understanding of words: we’re working on action and adjective words now. He is finally in “low normal” range for vocab - aligned with his peers - which was a big win for us! So now, we’re moving on to verbs - i.e. sitting on the chair, reading a book, swimming in the water vs. chair, book, water. He’s making huge improvements there now that we’re really focusing on it. Where he struggles is more complex descriptions. Example: we’ll show him four pictures - a black dog in a box, a white dog out of a box, a white dog in a box and a spotted dog out of a box. We’ll say which picture shows “a white dog in a box” - and he can’t pick it out.

He talks ALL THE TIME - constant chatter. We just cant understand it without context. He’ll sit and read to himself - saying all the words from memorization. And unless I see the book he’s reading, I have no clue what he’s saying - but he IS saying them. He repeats everything he hears. He has a large number of basic words, signs and movements that anyone can understand - so he can communicate pretty well. Yes, no, help, more, outside, my turn, etc. None of those words are said super clearly, but if you know him at all, you know what he’s saying. It all gives us hope.

And finally, I reach his biggest strength and one that fills me with the most hope: his superb knowledge of letters, numbers and counting. He knows all his letters - capital and lower case- he can count objects up to 20, he knows all his phonics sounds and can match them to letters, he can read and spell words that we’ve practiced (eagles, mama, yayo, nico, luca, marco, mimi, dog, cat). These are skills that are taught in kindergarten. We have a box of random toys and we pick one out and ask him what letter it starts with and he can put it in the right spot based on the phonics sound. “Bumble Bee - buh - what letter does that start with?” Other kids in his 3-year old class are learning to recognize just their own name and most do it only by the first letter. Marco can recognize everyone else’s name in addition to his own and can spell them all out. It is truly remarkable. Based on this, I’m confident he’ll learn to read and maybe not be able to write well, but he’ll be able to type. And that’s all you really need in this modern age. He has a talking device - so he’ll learn to talk through it more easily and quickly. I just hope he is able to communicate to peers in a quick manor and not be hindered by typing forever. 

That about wraps it up! He is a joy, he is developing consistently on his own curve, he is amazing. Happy birthday Marco!