Oddities

In researching Down syndrome after Eon's birth, I discovered the general consensus was that he would be "more alike than different" (from typical kids) and that he would just learn to do things a little slower.

While those things are certainly true, I'm discovering there is a little more to it than that simplistic explanation. I expected that he would take forever to learn to crawl, walk, feed himself with utensils, etc. Those are things my typical kids struggled a bit to master. I was right. We're still working on utensils.

There are also things that I did not anticipate that he struggles with. He has been working in PT on sitting in a low chair or stool. He loves to sit on things his size, he just can't seem to figure out how to do it. He approaches the stool, and rather than just turn and sit, he tries to climb onto it from the front. That doesn't work. After several attempts, he generally ends up straddling it. I never noticed my typical kids learning this skill. They just knew it.

The wonder PT, Jill, is teaching him to walk backwards to sit down. Which is a great idea...except Eon generally sits about a foot in front of the actual chair. After he sits short of the chair, he turns, surprised to see the chair behind him. (Terrible mom alert: I laugh every time. It is just too cute and I can't help myself!) You'd think this would be terribly frustrating, but he just gets up and tries again.

Another thing that he cannot seem to master is getting off the bed. We have a king-size bed and he has found ingenious ways of getting onto it. His favorite is to push the desk chair over, climb onto that and then onto the bed, but he's also been known to stack books into a pile to climb on, too. Getting off is a whole 'nother thing. By the time he's ready to get off the bed, someone has invariably moved the chair. For almost an entire year, we've been telling him, showing him, helping him to "turn and shimmy" off the bed to the floor. Sometimes, he actually does it, but usually, he just sits and whines until someone rescues him. Not sure what's up with that.

I also kind of expected that once he "got" something, he would have it mastered. That was true of crawling and walking (although his balance isn't that great, yet), but not at all true of speaking and signing. He gets a word and will use it frequently and correctly for several weeks only to "lose" it and never speak it again, or at least for a long while. We have seen "doggy", "ball", "Micky", and "book" just disappear. It is baffling and beyond frustrating to me. The signs that have disappeared seem to reappear much more quickly, although I haven't seen "again" for several weeks.

Those little quirks aside, he is doing great! He understands almost everything and follows commands really well. He's starting to string 2-3 signs together to make "sentences". He is really in tune to other people's feelings and feels really bad when someone is upset. He tries to make them feel better. When his baby sister cries, he will go and get her blanket or get her pacifier (and put it on her forehead - cracks me up!) The other day, he accidentally hurt his older sister and he just looked devastated. He signed, "hurt", "Ellie", and "sad", then folded himself in half and cried.

Maybe it's the therapist in me, but I find the way his brain processes fascinating. I can tell we are in for a wild ride! :)

Simeon is six months old now and I thought I should give an update. He is such a delight! We went on a camping vacation last week and he is the best little camper ever. He can sleep anywhere. I felt guilty much of the week because he spent so much time in his car seat or stroller. I tried to make sure he got enough tummy time and stimulation, but I don't think we did his prescribed therapy even once. Imagine my surprise when we returned home and he suddenly started meeting some milestones that he's been working on.

He can now sit unsupported for brief moments. He can prop up on straight arms when prone and scoot to the side to get at a toy out of reach. He can transfer toys from one hand to the other and everything goes in his mouth. We will be starting infant cereal soon as he starting to watch us eat and mimmick our mouth movements. These are all things that seemed so far away just a few weeks ago. His PT is so impressed that we will be starting weekly sessions as soon as we get approval.

He had not had any apnea episodes since surgery until last week in the camper when he had two in a row and needed stimulation to recover from the second one. So grateful for that monitor! When he sleeps on his back, he goes into bradycardia but no one in the medical community seems to care, so we just let him sleep on his tummy.

I am officially done pumping and feel really good about that decision, although if he gets sick anytime soon, I'm sure the guilt will come. I am amazed that he was able to get breastmilk until six months and even more amazed about how much more time I have in my day.

He is still the star of the show around here and sometimes I even get irritated when I hear his siblings constantly bicker, "No! He already gooed at you. It's my turn now!" His oldest brother, Ben who will turn four this month, is still his biggest fan and has been participating in therapy sessions so that he can "do therapy" on his own with Eon (with mom closely supervising, of course).

I cannot believe the depth of love I have for this baby.