I am the mother of identical twin sons. They turned two in November.
At 12 months, they seemed to be moving right along in their development. They were walking, starting to say words; everything seemed fine. I was a little worried they were late in talking, but they were talking, so that was something. By 15 months, they still had very few words but they were both doing some signs and also had a full repertoire of “action” songs in their arsenal. By 18 months, there were no words. None. No signs. No action songs.
Everything was easily explained away as a boy-thing, or a twin-thing, or an identical-twin thing.
We tried not to worry.
Friday, they had their first visit with Early Intervention. I wanted to get their speech back on track as soon as possible. Language delays were our number one concern. Of course, in the back of our mind, we’d thought about autism, but we weren’t going there unless we had to. It’s too difficult.
After thirty minutes of watching the boys “play,” and watching their interactions with me, the Early Childhood Development teacher and the Speech Pathologist, there was an early diagnosis of sorts. They weren’t as concerned with the language as they were all of the other things: they didn’t really play with their toys, they didn’t really interact with, well, anyone in the room.
Early Intervention wanted to proceed with autism evaluations.
The next thirty minutes involved me, sitting on a chair nursing my four-month old. Trying to not to break into an ugly cry, trying to keep it together and sound somewhat intelligent until I could get all of these people who just brought my whole world crashing down, out my door.
My sons are perfect.
And I don’t know how to fix them.
December 22, 2010 at 12:29 pm
I won’t pretend to know what your going through but as a mother I will say no matter what the diagnosis, your boys are perfect. No matter the diagnosis, it’s not your fault and you’ll get through it, there will be hard times but your never alone. Sending big ((((Huggs)))) your way.
December 22, 2010 at 12:42 pm
I’ve been there – my son has ADD and Asperger’s, and also had a form of epilepsy (he seems to have outgrown it) – no more powerless feeling than watching your child be tested and knowing there is nothing you can do to stop the condition that’s happening to them. I remember going from watching his EEG at 5 am to discussions with a specialist and then videos showing what to do in case of a grand mal seizure, all by 9:30. All I could do was wonder how I got there.
You aren’t alone, Slackermom. We’ll be here for you, and you and your boys will be in my thoughts and prayers.
December 22, 2010 at 3:35 pm
I know there is a HUGE amount of grief initially – for what you thought their lives would be – for dreams that you are now doubting. Here is the good news – they are still PERFECT! Their lives may be different than you first thought, but that doesn’t mean their lives will be less fulfilling. Your dreams of their future may take a different direction – a direction far more rewarding.
It’s tough – that moment when you realize it all might change – but then you move forward and embrace everything they are!
December 22, 2010 at 6:29 pm
I have a son also with Asperger’s and ADHD and I know that at first it is heartbreaking. I knew it was coming and still cried when she said the words. But, remember, they are the same kids even after the word autism. And they are perfect… now, it will be easier to get them the services and help they (and you) need. Good luck, and virtual hugs.
December 22, 2010 at 10:55 pm
I don’t think my son is Autistic, but the not speaking and other developmental delays make me fear for his future, and depress me greatly as I cannot help but compare him to other children his age and worse, younger.
It makes me so sad.
December 23, 2010 at 11:04 pm
Thanks eveyone. We had a 2nd evaluation and will be putting the boys on a bus to go to school on the other side of the city starting in January. I can’t even believe I’ll be putting two 2-year olds on a bus. I wouldn’t even put them in daycare! It seems like it’s going really fast, but I guess that’s a good thing.
February 5, 2011 at 2:24 am
Your story reflects so much of my own. My son was the same age, the same symptoms…hell, the same time period that the professional knew there were issues. 30 minutes. In 30 minutes, our world fell apart.
But also that was when so much hope came.
I remember that day. Unlike you though, I did that ugly cry. That soul wrenching, heart ripping, horrible, unstoppable cry. I cried like that for weeks, months–I still cry like that sometimes even now. We’ve dealt with autism head on for a year and a half now. My son will be 3 this month.
This is the part of the story though that we have control over. We love our boys and they will have the best of everything. There will be so much learning and support that they have no choice but to succeed. You’re right, our kids are perfect. And if you haven’t heard it lately, you’re a freaking amazing mother.
The road will not easy, but it will be worth it. Why? Because when your boys give you that hug and that kiss, no matter how few and far between, you know that they love you. No questions asked.
Please email me and follow me on Twitter! I love connecting and supporting families in the autism community. There are tons of resources I want to share and virtual hugs I want to give. Yeah, I’m lame. Autism is hard. We have to stick together in this.
There’s a quote I want to share with you: “When you shine a pure light through a perfect diamond, a spectrum is born.”
They’re tough, they can cut through anything. They’re also the most beautiful gemstone in the world. Our boys are perfect, flawless diamonds.
March 31, 2011 at 8:43 pm
For what it’s worth, as the mother of two boys on the spectrum, they are perfect. They’re different, but normal can be boring. It’s hard to watch any child struggle to do what comes naturally to another. And I won’t pretend that it’s been easy parenting children with Autism all the time. But still, I do for them, what I do for my neurotypical children. I look for the ways to make their path smoother. To give them the tools they need to navigate their world with greater ease. And I love them for exactly who they are, Autism included.
It turns out, once you get past the negatives, there are some really cool facets to Autism. My sons look at the world in ways I would miss completely. And I’m glad I get to see things from their perspective, even if they can’t always see things from mine.
Peace to you on your path.