We have been busy since Eli turned one! I think it’s a strange transition time for a parent to a child with Ds. He’s not considered a baby any more but I still feel like he needs me so much. He’s not doing some of the things many one year olds are doing, making him more dependent on Barry and I.
Typically at one you say you have a toddler, but I don’t feel like I can do that yet.
Part of me is sad about that realization. His delays are clear- just go to any play date or park and it’s there to slap me in the face.
It’s a hard reality but one I try not to dwell on. It’s too easy to loose focus and let things like that bring you down. (As one dear friend put it to me, “do you think Eli gives a damn what anyone else is doing?” Lol nope he couldn’t care less about when the Internet says he should be doing anything.)
But I got a big slap on Thursday during Eli’s IFSP.
They brought out tests and toys and a new PT so they could get an idea of where Eli is at. Over a time period of about an hour, they tried to get Eli to perform tasks and asked Barry and I questions about things he’s doing.
Based on all of this, they were able to “score” him and give a percentage of how delayed he is.
Now parents of children with special needs know exactly what I am talking about. But my friends with typical kids, if you could try for just a second to imagine seeing a piece of paper that breaks your kid down into a few categories and then shows where they are lacking….lets say in the “cognition” area…think for a second how that might make you feel.
I immediately felt attacked and my eyes glossed over, on the brink of tears. I felt like not only were they pointing out his delays, but they were saying my kid isn’t smart. And I know my kid. He’s quite bright. And I’ve spent a year working on not comparing my child, and ignoring all the milestone charts, and just focusing on Eli.
Even at my pediatricians office I don’t deal with the realities of milestones because they don’t treat Eli that way- they don’t ask what he’s not doing, they simply note what he is doing.
So I wasn’t prepared. I felt like I just got mowed over.
But the IFSP must go on and everyone was busy writing their goals and discussing the future with Eli.
In truth, the meeting went well. We upped Eli’s speech services and added PT so I feel like we have an awesome team being built up. That part went exactly the way I had hoped.
But seeing my child so simply broken down on that piece of paper did something to me. Broke a little piece of my heart.
Maybe (foolishly) I thought that my life had shifted in focus over this last year. I went from sadness and grieving, denial (even scoffing at the term “special need” ha!) and my whole focus being on Ds, to just living our lives and Ds only being a part of it.
It’s only been a year. And what a year. But maybe I’m just not far enough into this journey to think that Ds isn’t the focus of my life right now. Maybe once Ruby gets here that will change. I don’t know. But that IFSP was a harsh reminder that our lives *are* different. Our son *is* different. And that it still pisses me off some times.
(And thanks to all my friends and family who always talk me down, even when I’m being unreasonable or complaining. I wish I could be super inspiring and never complain or worry but when so much of our heart is living outside of your body, you feel exposed. It’s a very surreal and almost animalistic instinct to protect that piece of your heart. I don’t always know what I want- advice, just to listen, or an “atta girl”. So thanks for trying to help.)
I woke up the next morning stronger and ready to kick butt. And maybe that’s what a year of being the parent to a child of special needs does for you. I certainly feel stronger now than I did a year ago.
It’s just hard to realize that you are still so vulnerable. So in love with that little man and so willing to give up everything for him that it hurts my heart to see any difference or struggle that he faces.
And part of me spirals into another wave of anxiety because I know Ruby is coming and I want to be strong enough for two dependent babies.
All that to say, I know I can’t compare Eli to any one and that’s not what this is about.
It’s just an odd place to be right now.
Our baby is but isn’t a baby anymore. He still needs so much. And our IFSP helped us to sort through those needs and make a plan for the future.
Like I said for Eli’s one year post, milestones be damned. Eli is one amazing guy and I can’t wait to see what this year is going to bring. He’s perfect in every way. It’s his mama who needs a little extra dose of grace these days.