This statement in and of itself isn’t exactly earth shattering – at least not to my husband… I’m actually quite the cry baby when I’m really upset.
But the truth is, I’m not “really upset” very often. I’m one of those even keeled types who needs time to process bad news before reacting to it.
I’m also an excellent companion in an emergency: “Oh dear, it appears that your arm just fell off…why don’t you call 911 while I get some ice…”
No – I’m not one for the drama. And if there is one thing that I NEVER cry about, it’s my children. Oh sure – a stray tear escapes here and there as the result of pride or nostalgia. But never tears of sadness.
I’m just too lucky for that. I have three children while many have none. My children are healthy, they are kind to each other and they are loving to us. And at the end of the day, they are here. I have heard far too many horrible stories about the loss of a child to not appreciate that. Mine are here with me, and I can hug them as much as they’ll let me. For this I am truly grateful. I’m grateful every day for every day I have with them.
But yesterday I cried. About Oliver. And I feel the tears well up again as I type this. Because no matter how grateful I am that he is here, I’m also sad and worried.
I have to reiterate – I NEVER feel sad about Oliver, even though I’m very much aware of his challenges. He is four years old now, but his two year old siblings are quickly catching up with him in communication skills. Oliver has made so much progress over the past couple of years, and I am so, so proud of him. But he’s still so delayed… And I hate to see the puzzled expressions that other people give him.
Even more so, I hate to imagine what that will be like when he’s older. I wish he wasn’t the big brother. I’d like him to have a sibling who could stand up for him on the playground. Because I can’t. Aside from the fact that I can’t always be there – it would just humiliate him to have mommy fighting his battles. I can only hope that his size (he’s HUGE) will work in his favor. If some smart ass bully starts in, Oliver can just sit on him.
But his size isn’t just a joking matter. It’s ANOTHER concern. People think he’s older than just-turned-four. And because of his delays, he is far more like a just-turned-three year old (and one with speech delays at that). I worry about what this will mean for him in the long term. Will people always expect more from him?
But none of this is anything new. What really makes me sad is the fact that he now has a label.
We took him to a developmental pediatrician after meeting with a neurologist who couldn’t make an assessment (other than that Oliver didn’t appear to be mentally impaired, autistic, etc.). I mentioned this in a previous post. He recommended this particular developmental pediatrician and after a bit of a wait, we had our appointment last week.
The doctor did play-based testing that is now very familiar to me and I could see the areas in which he was not “typical.” If not by his actions, by her reactions.
It was after a phone call from her yesterday that I cried.
She gave me the short version of his assessment, but then I got the official report via e-mail and cried again. It said that his “delays and quality of interaction and learning are consistent with a child on the Autistic Spectrum. Qualitatively I would label him as Pervasive Developmental Delay Not Otherwise Specified and meeting the following DSM criteria: delayed communication, delayed social interaction, somewhat restrictive behaviors and symbolic thinking.”
Here’s the thing though – how is ANY of this news to me? I know all of this about him. We’ve been working on it with his preschool teachers. I see it at home every day. He’s just different. Wonderful and amazing and miraculous as he may be – he’s still different.
I’ve written about this before and was very clear about the fact that I don’t care if he’s different. I love him for exactly who he is – quirks and all. So I wasn’t upset to hear more about what I already knew.
I think that the real reason I was so upset by this news was that Oliver was finally given a label. A label that doesn’t say that he’s wonderful and amazing and miraculous. Only that he’s different. A label that changes all of the “what if” questions into “if then” statements.
This is a good thing – to have concrete “if thens”. If Oliver is on the Autism Spectrum, then we have a direction to take with his treatment. If Oliver has an actual diagnosis, then he will qualify for all sorts of special services that we would never be able to afford otherwise. If Oliver has a label, then we can give others an actual reason for why he acts far younger than his age.
But if Oliver has a label, then all of this is real. It won’t resolve itself or go away.
The report says that his label is “qualitatively” based on his behavior. And I know that no matter how much help he gets, he will never “qualitatively” be like other children. This is just the way it will always be.
And while I still wouldn’t change him and I still think he’s wonderful and amazing and miraculous, I am now feeling sad and worried. To some extent this is also the way it will always be. And I suppose I wouldn’t change that either.
My love for Oliver and my appreciation for his fabulous individuality is a constant. One that can’t be affected by any amount of testing or labeling or restraining myself from physically assaulting playground bullies who try to pick on him. It will never change.
I know in my heart that Oliver will be okay. More than okay – I mean how could he not? We’ve already established that he’s wonderful and amazing and miraculous. But sometimes I will be worried. Sometimes I will be sad. And sometimes I will cry.
No matter what though, I know that I will always be proud of him and I will never want to change him. And that is exactly how I know that I will be okay too.
(then a few days later, I wrote…)
It’s Okay – I Didn’t Jump Off the Ledge…I Just Climbed Down When You Weren’t Looking*
First of all, I’d like to say that I really have meant to personally respond to all of the kind comments left on my highly dramatic mind dump last week. But time has gotten away from me – so it might take a while.
Needless to say, I am feeling much better now.
The truth is – nothing has changed. But we now have a “point A” from which to work. “Point Z” is very far down the road, a road that I’ve heard is a hard one at that. But it’s far from being the one less traveled. Many people out there with similar experience have offered advice and encouragement, as well as tan, toned virtual shoulders to cry on (is it just me, or does everyone else have a much better body online?)
That said, I have learned a few things since my uncharacteristic breakdown last week:
1. It’s okay to feel sorry for yourself for short periods of time – but never longer than necessary.
2. There are always worse problems to have, so you have to focus on everything that is good and right about your lot in life.
3. Feeling sad is a waste of time unless you know WHY you are feeling sad – how else can you learn and recover?
4. Little pitchers DO in fact have big ears (though no one really knows what baseball has to do with anything) and if a child has a delay or disability, they are still far smarter and perceptive than you could ever know.
5. I often lose track of my thoughts and have no idea where I’m going with this list.
RIGHT – so I know that I had a point beyond platitudes…unfortunately, it now eludes me.
But what about Oliver?
He’s fine. In fact, he’s great. Still wonderful and amazing and miraculous. And still very delayed and on the Autism spectrum.
But like I said last week – that’s just a label. It defines his current behavior and challenges. But it doesn’t define him. And it certainly doesn’t define me.
I knew that things had shifted for me when one night in the dark, a disembodied voice (don’t worry – it was just Chris) asked me, “Oliver will be okay, won’t he?”
I answered without hesitation, “of course he will. Because I’ll make sure he is.” And I knew that was absolutely true.
So if you got scared when you noticed that I had disappeared from my angst ridden ledge – don’t fret. I just crawled back in the window while you weren’t looking.
It was a bit too breezy for my liking. I get cold easily, so I thought I’d better go get a sweater. And once inside, things didn’t seem quite so dire anymore.
There were sweet little babies who needed my attention and several pleasant hopes for the future that needed dusting. Someone was making dinner, and I realized that I was ravenous. I can always be distracted by snacks. And shiny objects. And if you haven’t noticed, I’m a little obsessed with my blog life.
Frankly, I’m just too busy to hang out on ledges with the pigeons. They aren’t the best conversationalists. And they eventually flew away when they tired of me hogging their spotlight. You know pigeons – it’s always all about them and their problems…
Right! AND (I just remembered) because:
6. Self pity is for the birds.
*Oliver is starting Kindergarten on Tuesday, September 7th, and I’m devoting this and next week to posts I wrote about him and his special needs. It helps me to re-read these and see how far we’ve come. It gives me even more hope for the future and reminds me of why I’m so proud of my son. Worry about the future will always take a back seat to that feeling. I wrote these two in May 2009.
As I read this post, one thought kept creeping into my mind over and over. I tried to think of something profound to contribute, but that one thought just kept coming. So I figured I'd just tell you what that thought was:
"He's so lucky he has YOU for a mom."
Label or no label, challenged or not, tears or no tears…at least he has you.
Kate, I don't know what to say. Except that you have the right to cry because being a mom is tough. You are a fantastic mom. You have wonderful children. And even though you were given a 'written report' that makes certain claims about your son, what really is the worst thing that can happen? Think positive. A few more appointments, having to try harder? I think he will thrive and be a wonderful member of society. I think of course, you're blessed, and so are your children. I want to give you a huge hug and let you know that I'm here and that you're a wonderful mom to your children.
First of all, huge hugs to you!~ Second, I could have written this when my big guy (as in young and delayed and HUGE)was Oliver's age. Third, until you got a definite diagnosis, you weren't able to truly grieve for that Oliver that could have/might have/would have been if he wasn't the Oliver he is. And that's okay, that's needed. Mine is the oldest, too, and I panicked so much when I was pregnant again and hoped so much it would be a girl so that there would be less comparison between him and the new one. She was a girl and it did help, but still, when kids younger than yours are calling him a baby and not wanting to play with him, it's so sad. But there are many upsides and blessings to Oliver's situation, as well. For example, my other two children are more caring, more empathetic, less frivilous etc. etc. than other children their age. They have a deep and abiding love for their older brother even when they want to run screaming into the night b/c he can be so annoying and hard to be around at times. He has made me a far better person, mom, wife, etc. It's a different experience than we hoped for but it's one that not everyone gets to have. Still, it's hard and you have every reason to cry.
I'm sure that at some point, your little ones will be there to step up for him.
Oliver is so lucky to have such wonderful parents and I have a feeling his siblings will be there for him when he needs them too. While it totally sucks to get such a diagnosis, at least you now have a Point A from which to progress.
Oliver's wonderful and amazing and miraculous qualities will enable him to take the path that works best for him in all of his uniqueness. I know you'll give him all of the positive energy that he needs. You definitely don't want Oliver to feel that you are sad because of him, so please don't be so hard on yourself! Easier said than done I know. Hugs
Don't ever stop dreaming big for Oliver, you are his biggest cheerleader and I just know in my heart he will amaze all of us!
One of the things I really appreciate about you is how honest you are … and how nurturing you are to your kids. It's obvious with your posts… holy awesome (especially to catch up on your life and read stuff you've written in the past). But you truly take the time to BE with your kids when you're with them. I think that type of environment, one where you're really focusing on what's important, is what's going to keep everyone in your family going strong. You rock!
As a mother of a 13 year old son on the Autism Spectrum (Aspergers)you are entitled to have bad days, you need to be validated of your worries and sadness.
I was asked by a mother at my book club if I ever wished Josh was normal – I was at first a little taken back but then, realized Josh is normal to our family and we couldn't imagine him any other way.
Oliver's sibling are lucky to have him as their big brother and you will find that your other children will learn to have more compassion and understanding of other people and this will all be carried on throughout their lives because of their big brother, Oliver.
You'll be in my thoughts!
This is a great post for any parent to read.
Thank you for your honesty. You are so brave to admit and allow your feelings, to experience them–trudge through them and then look back.
We are all better for it.
xo