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.
*Note: I actually wrote this yesterday – but was too busy avoiding my feelings and creating new blogs to post it. Hope it’s not too much of a downer. I really am feeling better about things now.
I am so sorry that you cried. That takes a lot out of you. I am glad you’re feeling better today:)
But you’re right – having a label is actually a good thing because now Oliver will qualify for special education services.
I’ve been there, too. And I’m actually going to write about it soon. But I totally know how you feel. Labels can help, but it’s hard to accept them. Hang in there, and good luck!
This post is one I’ve lived. I believe these kids can be completely rehabilitated. The brain can be fed and re-mapped. The younger the better! I have a son who’s proof.
I understand your tears, your worries and your fears. Don’t lose hope and don’t take “it will always be this way” as a fact. I’ve researched this topic for years.
Thinking of you and sweet Oliver…
Oh I am so sorry! I am glad you are feeling better! Hang in there!
I’m so sorry you were so sad and justifiably upset…but I am glad that you are feeling better today and love that new blog. I think a celebrity has written a book about what Chris mentioned in her comment – maybe Jenny McCarthy? Maybe someone else? Couldn’t hurt to read it…and of course, if there’s ever anything at all I can do, I’m just a phone call away!
Being sad is a natural part of being a mother. You want to protect Oliver for the world and anything that might harm him.
You’re a great mother and he’s lucky to have you and he’s a fantastic boy and he’ll be OK. I remember when he was little how much I marveled at his joy and kindness.
I’m glad you’re feeling better today.
It’s so hard to love these little creatures so much, isn’t it? Ben has some delays we’re dealing with and I fear for him too. Of course we want everything to rosy for them, but the best we can do is love them and prepare them. Unfortunately.
Crying is good for us. I swear!
I wish I could say something great or give some advice. Instead I just offer a hug, or a high five or just a slice of something.
You’re a GREAT mom. Oliver doesn’t know any different and you guys will surely do the best you can for him and the twins.
kate…
you know that i know exactly how you are feeling. crying is normal and is healthy so don’t beat yourself up!
here is another way to look at it. here is another way that i look at it…YOU can handle it. YOU were given oliver because YOU will be a great mother. YOU can help him. YOU can give him all that he needs. oliver chose YOU to be his mother because YOU CAN DO IT! YOU CAN DO IT! its all not random. it’s all a plan.
but know that i am thinking about you and hope that you have a better week….
xoxo
My heart goes out to you.
While in some ways labels can be bad because that is all we see, not the wonderful child underneath. Lables can also be good because they give you a direction, a jumping off point. Now you know where to go, how to get the help you need.
Wow, Kate, you so perfectly summed up the pros and cons of having a “label.” I know I haven’t written about this before, but I very much can relate. Very much. And your posts about Oliver’s individuality and how much you cherish him FOR it, not DESPITE it, have been very helpful to me.
Sending you a huge hug today.
Kate – this is so hard, I do know, as Charlie is visually impaired. But now that I know what is wrong with Charlie I can move forward and I think you will find the same with Oliver. This ‘label’ gives you a base and it only gets better from now on as you can strive to find out as much information as you can.
At least you know now how to work with him and hopefully will be able to receive help.
It is so hard as we all want our kids to be perfect.
What CSquaredPlus3 said is what I have seen. I watch specials and I read articles about it. You can change the outcome with lots of hard work. Jenny McCarthy has worked really hard with her son and has made big improvements.
Still I know it is hard to know that your child is not “perfect”. As if any of them are.
Crying can be a good thing. To me it releases stress and makes me feel better afterwards. I rarely do but certainly wish I could sometimes.
What can make us feel more vulnerable than our precious children?
Of course you cried, and I hope it let you release a little bit.
Thinking of you.
Whether or not Oliver is able to work his way out or remains within the parameters of his so-called “label,” he is extremely fortunate to have you guys for parents.
I have a friend whose brother has had “issues” since he was a child. I got to know him a little better a few weeks ago and he is much less socially awkward than he used to be. He’s very intelligent and graduated from college, but his nervousness and obsessiveness is a real handicap, and it’s definitely not just a psychological thing. They never called it anything before (maybe they were afraid to) but now they say he is mildly autistic and they didn’t realize it back then.
My friend is certain that his situation was made worse because he and she grew up in a very tense and unhappy environment. That is why Oliver is so lucky to have parents like you. He stands a much better chance than my friend’s brother did.
I cried yesterday too. Also about my oldest boy. Mine doesn’t have a label except for the one I’ve given him: sensitive. I cried out of frustration because school this year has been such a challenge and his ‘new school’ looks to be trying to keep it up. They can’t because I won’t let them. We’re the mommies. We protect them until we can’t or shouldn’t but we never, ever stop worrying.
I’m sure Oliver will be fine. The services will help so much. And he is wonderful, amazing, and miraculous. With a wonderful, amazing, and miraculous family firmly in his corner.
Crying is good. Sometimes it’s all we’ve got, you know? The alternative is far worse, in my humble opinion.
My heart.
It just broke.
First Amalah, now you. You guys are tugging at heart strings I didn’t know I had.
He will be great, and wonderful, and marvelous. Because he has you.
Excuse me while I go hug (hide my tears in) a kitten now…
Aw, that’s rough to hear everything in such definite medical terms. Oliver is very lucky to have such an understanding, optimistic Mom like you! It’s obvious that you will do everything you can to help and nurture him, no matter what the official diagnosis is. Just like your other two kids!
Oh I could write a novel here. My oldest looked like the dumbest 4 year old on the planet when she was 2. She’s very tall and has been given a diagnosis in the Autism Spectrum. BUT she’s 9 now and not behind her peers and not unusual and not an outcast. She’s funny and quirky and beautiful and tall and sweet and way way too smart. All the things she was when she was 2 and looked like the dumbest 4 year old on the planet.
Time will be a friend to Oliver.
I rarely chime in. Im her husband. We always knew something was a little different, a little off, but really chose to just think that all will be Ok. Well, we arent so sure we were right about that. I can tell you that she and I are heartbroken but willing to do anything to help him. If you only knew him you would just smile and say, “Oh, Oliver!” and smile because that is the way he would look at it. Thank you for the comments. It will be a long road ahead.
Beautiful post. Hang in there. Oliver is so lucky to have you. And you to have him.
Sometimes I think crying is just the deepest part of our love for our kids coming out, you know? I have sat in classrooms and in front of school principals and cried in frustration and love, trying to get someone to understand that my oldest son needed help outside of his classroom settings and hearing things I didn’t want to, or, worse yet, not hearing the things I wanted to. Granted, we’re dealing with different avenues than you may or may not be, but it comes down to wanting only the best for our children and being willing to stand at the base of the mountain and physically push at it in hopes we can move it. No matter what happens from here, Oliver sounds like he’s going to always be a really amazing person.
i´m glad you are feeling better kate. sending you a big hug!-jane
I’m sorry to hear that things are weighing so heavily on you right now. I can’t imagine what that must be like. Sometimes you have to cry, though, to let all those feelings out – and getting them out on paper (or on a blog) helps, too. Just know that all of us out here support you. I hope you’re having a better day today, and I’m going to try to make it even better because I left something special for you on my blog. It might just be an award for you!
Of course Oliver will be fine…he’s a product of YOU. My nephew is autistic…he graduates next week from high school. They grow, they amaze…but i DO feel your pain and worry, Mommy. I do.
wow.
And yeah, he’ll be fine. You’re an amazing mother and you have now given him the opportunity to have all the support that he deserves to be the best he can be. TOO often I see children who obviously need a diagnosis, but parents refuse to acknowledge it. YOU are and AMAZING parent, in that you are thinking of HIS needs and not your own.
I applaud you, can you hear me????/
You know my daughter is autistic and it is so hard when you first hear that word but it does get easier its just hard to swallow at once!
This was truly and utterly such an honest and sincere posting. I commend you on your bravery to admit your feelings and speak from the heart. So thank you.
It’s true that what doesn’t kill us makes us stronger. I had to go through adversity and labels growing up too and it helped to shape the person that I am today. (By no means am I comparing myself to you or Oliver because we’re all different). Just keep doing what you’re already doing…loving him.
What’s interesting is that the “label” seems somewhat vague or am I reading that incorrectly? Based on some of the other readers’ comments it seems there’s a possibility to work through this during the developmental stage. I have heard stories of that.
Thanks again for your honesty. I shall be following up on your site.
Big HUG!
You just described my nephew-
he’s wonderful and a little slow developmentally-
and he’s HUGE- just a BIG guy-
I’m going over to my sis in law’s house today and going to get you the name of his school-
He’s made tremendous progress just since September!
But I understand about the looks- my nephew is so big that sometimes people look a little confused…
and that’s not fair…
XO :)
It is so heartwarming to read all these loving and supportive responses. You and Chris and Oliver are surrounded by understanding, loving, caring family and friends who are here to bolster you up both physically and emotionally in any way you need. It’s especially inspiring to read the comments of those who have been there. I love CSquaredPlus3’s comment “The brain can be fed and re-mapped.” I truly believe that and know that with Olivers wonderful personality and enthusiasm and the right concentrated therapies and teaching, he will have a happy and productive life. It goes without saying that having you as his Mom means everything. He did choose you, you know.
I love you all,
Mom
Never feel that you can’t cry. Sometimes it’s just needed.
My oldest was a preemie. He is 5 now and has to wear orthodics for balance. In order to get help through his school next year, I had to sign a paper which stated he was handicapped. Never in a million years would I use this label. I prefer handicapable.
Labels can be harsh, especially ones given by bullies. You are a terrific advocate. Your child is so lucky. Receiving a diagnosis so early will be beneficial. My prayers are with you and your family.
If you read only one post today, read this one from Diary of a Mom.
We’ve spent the past 2 years going through countless evaluations with my daughter Maya to determine whether she has PDD-NOS or if her challenges are emotionally/psychologically based. This rollercoaster of treatments and evaluations (search “Maya” on my blog if you want the whole story) has shown that she is probably not PDD-NOS, which in her case means similar symptoms and the same treatments, but no extra funding. Anyway, I’ve been where you are. It can be very dark and very frightening, but it won’t stay that way. As you move forward and get back to seeing Oliver as the same wonderful son he’s always been, and as you learn more about how wide his horizons can be, that light at the end of the tunnel will keep getting brighter and brighter. They’re learning more and more about autism every year, and are getting better and better about helping our special children. I posted a long time ago about “moving the goalposts” – your goals may not be the same for Oliver as they are for your other children, but his light can still shine bright enough to light up an entire solar system.
E-mail me if you want a been there done that shoulder to lean on.
Heck, I think we all cry sometimes, thinking about all that they face, good and bad. Throw something unknown on top of all that and no wonder it gets to you sometimes.
Fortunately for Oliver, he is as lucky as you are ;-) Hugs.
I can only echo what others’ have said here already.
Of course it’s okay to cry. Sometimes you have to. What’s important is where you go from here – and I think Oliver is very lucky to have you.
Kate, this isn’t a ‘downer’ at all. This is your reality, your feelings today and I’m so glad you shared them with us.
I think a good cry is just that…good. You probably needed it. You were given a whole lot of information, and even though you knew, it must have been huge to see it in print like that…like you said, there’s a label.
Thank you so much for writing this and letting us in a little. You are such a good mom to your Oliver. I know you believe you’re lucky and blessed to have him, but know that he is lucky and blessed to have you too.
His diagnosis sounds exactly like my nephew’s (he’s 3 1/2). My sister just recently was told this same news after lots of testing.
Kate – I just saw this post listed on the BlogHer ad on Kirsten’s site. Just thought I’d let you know.
i cried with you. you are a great mom. take this for whatever it’s worth but sometimes what helps me is to realize someone always has it worse…not to lessen what you are going through by any means..but maybe to sometimes put things in a different perspective. anyway, here is my friend’s blog. her son is severely autistic. she is my idol. http://rileysroadhome.blogspot.com
I apologize for the late comment; I’m only now just catching up on my favorite blogs.
I don’t know all of the details about Oliver, as I’m rather new to following your site. But I read this and to a small extent, I could relate. While I don’t have kids of my own, my nephew spent all of his early years with all of the same labels. He is now 13 and yes, he still struggles with certain things… BUT he has also overcome many of the challenges no one ever thought he would.
From the little I know about you [from reading your blog], it’s certain that you are an amazing parent and I honestly believe so developmental delays can be with hard work and dedication to your child. You seem ready to do what you need to do to be there for Oliver every step of the way.
[Not to ramble on too much] I was also an assistant at a preschool for autistic children. You’d be surprised how may people accept the labels and don’t work with their children to explore the unknown. Oliver is very lucky to have you.
I just found your blog through a friend…she told me about this post and knew that I would be able to offer some insight and some comfort.
As a younger sister to a boy who is autistic, I would LOVE to have a conversation with you one on one…from the perspective of the younger sibling. (I am also only 18 months younger than my brother, similar to your children.) Please, please email me, I can give you my phone number (or you can give me yours) and we can talk.
supersebold@knology.net
Hey there, I know this comment is ridiculously late, but this was posted during my "mark all as read" period. I've been meaning to find this post since you made mention of Oliver's diagnosis to me some time ago. I also read your subsequent post, which was also wonderful. Ok, end of non-comment commenting…
I empathize with this post so strongly. There is so much of it that I have felt almost the exact same way about. Know that it's okay to grieve and to cry. I spent a couple of years shedding more tears than I could imagine. I cry less now. I think age is such a huge help to these kids. And Oliver is so lucky to have you. You are clearly on top of the situation (as much as you can be) and will get him what he needs.
Remember that there are many, many successful autistic adults out there with successful jobs, friends, and marriages. Once these kids get older, they get better at learning to adapt. In fact, I'm convinced that I am somewhere on the spectrum as well, if that tells you anything. (I'm not sure that it does.)
I'm here for you. Let me know if you ever need any support or half-assed advice. You have a great attitude about Oliver. He's lucky to have you. And I think it goes without saying that you're lucky to have him. :)