Nico progress report.

[lollardfish]

Looking back on the last semester - it was long and hard. Beyond the work and the difficult schedule and our own lives, parenting was extra difficult. Nico was stuck on really all issues - walking, communication, overall body strength, eating, interacting with other children, attention span ... especially attention span. It was tiring and frustrating. I know that I had begun to really feel the weight of Nico's disability. I had sort of figured that by 2, we'd be close to where most children are by 16-18 months - rudimentary speech, standing/walking to some extent, greater ability to both follow direction and initiate play. It just didn't feel like we were anywhere near those benchmarks.

As a father of a child with Down's, I work hard to parent without expectations - I don't want to set limits for Nico's potential, but nor do I want to expect certain things to happen on any particular schedule. It's a challenge, and I had, it turns out, set these "by two" benchmarks.

Since Thanksgiving, Nico has made great strides in essentially every category. He also seems to have grown last week (it's not just the Lightning McQueen sneakers!), as he towers above objects that just recently were at his eye level. His attention span is great. He's signing consistently (baby, mommy, daddy, eat, drink, bath/potty, sleep, no, yes (sometimes), love, play (not always used clearly), and no doubt others). He's making all sorts of new sounds with his mouth, some of which reflect words (I say, "ba-ba-ba bath." He says, "buh buh buh buh buh!"). He's following directions of increasing complexity and showing attention to completing whole tasks (unload all the blocks. Pause. Put all the blocks back in) rather than starting many things. All his therapies have been fantastic this last week - from group play to communication to eating with a spoon to lots of standing in PT.

It's beginning to look a lot like Christmas?

Comments

[mia-mcdavid.livejournal.com]

I'm glad! You'll find over and over that children plateau, and even regress, before they make new strides. Get used to the pattern; you're going to see a lot of it.

[creidylad.livejournal.com]

I hadn't realized you guys were in a plateau cycle for so many months, and I'm sorry to hear it. I definitely know how frustrating those can be -- you cling to every possible sign of progress just to have it not-repeated and wonder if you imagined it, and it seems to go on forever. And then suddenly, just like now, whammo, you get progress!

It will probably be like this for a long time. Just remember, during what looks like the plateau periods, he IS learning, it just takes him longer to show you-- and eventually those periods get easier to cope with as you realize what comes at the end of them.

ramble ramble.......

[mizzlaurajean.livejournal.com]

The biggest eye opener for me was seeing just how dramatically muscle tone effects and can delay over all development. I really just had no idea what that would mean for Nico and any child with tone issues.

I'm often pleasantly surprised though that he seems to cognitively get things that I wouldn't expect of a child his age regardless of disability to comprehend.
Not to say there may not be delays along the way. It's just fascinating to observe differences in development.

Attention span can vary so much for toddlers and preschools.

It's definitely harder to set or gage expectations for his development. I think as parents/educators we want to set the expectation that they meet their potential but figuring out what that is is always in flux.
To some extent this is true for all kids but perhaps all the more true for children with disabilities and kids at risk.

I think if all parents could learn this going in to parenting that you have to meet your child where they are developmentally not where you want them to be think they should be etc. it's a valuable skill to be able to embrace them for who they are that some parents never learn.

I like how our agency addresses these issues with adoption talking about developmentally the lack of shared biology could mean despite you be well educated and stressing education that your child doesn't enjoy academics or has some learning disabilities etc. That they may have very different interests from you and you spouse and how will you meet those challenges. To be fair this happens in all families regardless of origin but it is less likely with shared biology. All parents should think about this but not all do. Some rise to the challenges their children's differences bring to the family and some fail miserably damaging what may have started as a secure attachment.

My mom's family was always good at this wanting us to be happy and healthy and letting us define what would make us happy. My dad's family always seemed to base our success and how well educated you were, how much money you made, how well you dressed etc. Not that they lacked loving merits as well. But my mom's did a better job of accepting us for who we were and encouraging our interests separate from their own and working with our abilities to meet our potential not their ideals.

[sleigh.livejournal.com]

You go, Nico!

[jdtacv.livejournal.com]

You should talk to Ann over spring break about her Suzuki training and recent coursework. She's really getting into education theory for young'uns It is a general theory of childhood education that goes far beyond music. Much of what I hear (which I am not smart enough to regurgigate) seems beneficial to all parents -presumably you as well. What I like is that the theory is not very much at all about achieving objectives (by a certain date, or not), but about the process, and enjoying the process. It seems like a lot of is about positive reinforcement 100% of the time, even when you want to pull out your hair. That is a skill few parents have, I've noticed, but it really seems to work with Ann's students (and kids). FWIW. Looking forward to seeing y'all shortly.

[cakmpls.livejournal.com]

I'm glad he's doing so well and you are feeling more relived.

Parenting without expectations, in either direction, is, I think, a solid value for ANY parent, for all parenting.

This is a wild idea, so freely disregard it if it doesn't resonate. I wonder if possibly your profession, education, career path, leads you to think strongly in "stage" and "benchmark" ways. A person goes to grade school, then high school, then college, then grad school, then gets this kind of position, then this next kind of position...and if the person stops progressing, they are in some sense a failure. (This is SO not my own point of view, but it exists.) But a lot of life, including a lot of work, isn't like that, with clear stages and benchmarks.