Wednesday was long. Our morning started bright and early at 8am with Ellie's ECI evaluation for home therapies - specifically for her uppers & her neck. (Her lowers are treated 3 x/week at the hospital plus I do home therapy on them 3x/day.)
In some ways, I was prepared emotionally. I've done this before with Will. I remember how unfair some of the questions were:
"Does your child grasp an object using 5 fingers?"
"Ummm.... no. He doesn't have 5 fingers. But he does grasp the object."
"Sorry, he gets zero points as he must use 5 fingers to get the point."
The therapists acknowledge the questions aren't really fair. For me, mastery of the skill is important - I don't care about the method used.
But, my pride creeps (leaps?) in and doesn't like hearing my child scored a zero.
Darn standardized tests.
In some categories - like social/emotional- Ellie scored at the 5 month old level! In self-help, she scored at the 4 month level. This cracked me up. What 7 week old or 4 month old is "helping themselves?" Apparently, the fact that she goes so long at night between feedings and takes naps is what pushed her to the 4 month level.
But in other categories, she scored at the "birth" level. The therapists admitted that it was likely because of her lack of range of motion - not necessarily that she is not cognitively able.
Someday I'm going to re-write that test. In my spare time.
They gave me the chart. I have one for Will hanging up in our playroom at home. It has highlighted and checked off marks all over it. I'm a list maker and it brought me great satisfaction to cross off milestones as he accomplished them.
Now, Ellie has her own developmental milestone chart. I compulsively went through it today and noted that she is behind on some of the motor skills.
I believe she will catch up and she will do things in her own way and her own time.
I know this to be true because I watched it occur with Will. (Who, by the way, according to the chart is on target with his motor skills for the most part (or within a 3 month range) but his language and social/emotional skills were closer to the age 4.5-5. That makes me feel better about the fact that lately his reasoning skills he has used to argue with me about a direction or something have actually left me speechless. Lately, I have to admit that sometimes he makes a good point and I am forced to use the old "because I said so" since I don't really have a good retort... but somehow am still right. I was fretting about being outsmarted by a barely 3 year old... a nearly 5 yr old outsmarting me with logic seems much better. Right?)
I digress.
Surprise, surprise.
So it kind of stinks to already see things we need to be working on to catch up. I just want time to enjoy Ellie. That has been so hard since we started treatments at 6 days old. I haven't even taken her home to her own room yet. Sometimes, I wish I could escape with our family for a few weeks without therapies or treatments or casts or appointments or doctors or anxieties or fears ... preferably to a beach. I just feel so busy and now am adding more therapies to our lives.
I want to hold her to her own standard. I hate comparing her to other babies and what they are accomplishing. And yet I do find myself noticing other newborns and how they move their limbs. I actually forget Ellie has limited range of motion until I see another newborn wildly moving. To me, she is just my Ellie.
I struggled with Will when I would see other children his age crawling or walking before he did. I struggled knowing it was so much work for him to accomplish the milestone. I also celebrated more because we worked so hard together. For that I am thankful. The reward is so much sweeter. But the road is hard and often so much longer.
I know this will be true with Ellie too.
I have to believe it.
It's just so wearisome to be at the starting line. Again.
For 51 days it has been about eating and sleeping and pooping (& therapies but that's another post.) She's accomplished those milestones. And yet now I'm being told she has delays. Delay is okay - delay doesn't mean she won't get it someday. Delay just means work. And it means answering questions that I know are coming from Joe Public who wants to know if she is crawling or sitting or cruising. Normal questions people ask people with babies. Questions that can be complicated to answer when your child has some delays.
51 days and reality hits. Again.
And the work begins. But I just keep hanging on to how sweet the reward will be. I remember vividly our little family "walking" party the day Will took his first steps. I'm looking forward to more precious celebrations with our Ellie girl - in her own time.
3 thoughts:
My oldest has Autism and hypotonia. She has a severe fine motor skill delay. The last evaluation put her fine motor skills in the late 1 year to early 2 year range.
She was 6. I knew how bad her fine motor skills were. I'm not ignorant, I'm not unaware, I live with her. But there something about seeing them in black and white that just punches me in the stomach each and every time.
She wrote her name for the first time at 7 1/2. It's not legibile only a few therapists and my husband and I can make out the letters but she did it. And my heart leaped with joy.
I was so proud of my typically developing 5 year old (my Ellie) when she learned to write her name at 3. I showed her the letters, handed her a pencil, and watched her write. I did next to nothing to help her.
I was proud of her but it really wasn't the same nor as special.
I too hate comparisons. I remember our son Tim failing is IQ test, because he didn't sit up until he was 2. He wasn't walking yet, and he wasn't potty trained at 3.
What did any of that have to do with IQ? Nothing.... but it was on the test. UGH
He has Cerebral Palsy. He has a college degree and teaching degree.
But.... he didn't walk when the test said he should. LOL
It appears they still haven't re written these things and he is almost 30!
I wonder what they would have said about Erika..... She was unable to walk, talk or sit at 4. She was barely able to feed herself at 7.
But, oh my is she smart!
AND, she can make a basket in the hoop now, and walk!
Tests schmests.... who cares.... Your Ellie is beautiful and alert and will accomplish what GOD has intended for her.....
I was a nanny for a long time to a little boy who will never make it out of the infant stages of development, mentally or physically. He wasn't mine, but he felt like mine. I know what you mean about comparisons to other children. I never compared him, he was just himself and he was perfect and exactly the way God made him to be, but it still brought me up short to see typical children who were the same age as him and think that is a nine year old?? To know that if he'd been typical these were the things he might be doing and saying always hit me. But then I would go back to my boy, my special, perfect boy, and I wouldn't trade one of him smiles for legs that worked.
When I worked at a mental health facility I saw hundreds of kids who could walk and talk and looked perfectly normal whose lives were wrecked by chemical imbalances, child onset schizophrenia, bipolar disorder, manic depression, etc. And not just their lives, but their families. To tell you the truth, those were the most profoundly "disabled" kids I've ever met.
I know it's hard right now. Believe me I know how much it hurts you when you have to hurt them - I listened to my precious little boy scream and cry for three weeks straight when he had to have surgery and be in a cast. But you will get through this. Your kids are beautiful and strong and bright and well balanced. They're going to make a place in the world and advocate for themselves. Will is so capable and has such a stellar personality, he's hardly going to seem disabled at all by the time he's been in school a couple of years, and I'm sure Ellie will get there, too.
I dream about my little boy at least once a week. I have never dreamed that he could walk, I always dream that he can understand me and, sometimes, talk. Treasure every smile and every word, our kids are exactly like God made them to be.
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