A year ago today, we made it official. The Diagnosis.
Why is it that I have this date stuck in my head for all eternity? It's not like I didn't know before that day what she had. But there is still something about it.
I remember the day and the feelings that came along with it all too clearly. I was hugely pregnant with Rascal, so to say that I was emotional is an understatement. There was a big conference table, and two sweet women sitting there giving me the results. They had this air about them...as though they knew how horrible it was to hear, and wished they didn't have to say it. They let me cry and handed me tissues. And they told me, in the end, that it wasn't the label that mattered so much. What mattered was that I knew early on and could get her the help she needed. They told me that they saw a lot of potential in Diva Girl, and that they had high hopes for her.
I wonder if they know how much I needed to hear that. I wonder how much of what they said shaped the decisions we've made for Diva Girl.
I remember feeling, that day, like it was the end of the world.
It wasn't.
My daughter talks to me now. She looks me in the eyes. She says "I love you" again! She is proving those ladies right, every day. She is growing before my very eyes, into such an amazing person. I feel so blessed to be the mother of such a spectacular little girl (even on days like today, when I get so tired of telling her to stop licking the window screen that I'm half tempted to throw her out of it).
My daughter has Childhood Disintegrative Disorder. She is so much more than that, or any other label.
She is perfectly imperfect.
Thursday, October 21, 2010
Wednesday, September 29, 2010
Public Service Announcement
Poor little sad neglected blog. Hopefully, now that the shock of my new academic life is wearing off, I will post more often.
It is a classmate that inspired me to start posting again. No, not because she was so brilliant or encouraging, but because I need to warn you all. So listen up, normal people!
It is not ever appropriate to ask the mother of a child on the autism spectrum "so, what's your child gifted at?" Got that? Even if that is what pops into your brain the moment they say autism. Even if EVERY child you met on the spectrum happened to be a whiz at music or art or math. Even if you love the movie Rainman. Not ok.
Why? Because I had no good way to answer that. Because for an instant, I wanted to burst into tears. Because it is as ridiculous of a stereotype as "autistic children don't show affection". Yes, maybe some autistic children can play the piano by ear by her age, or read perfectly. She can't, but I'm not losing any sleep over it. It's not as though I need her to be gifted in some area so as to make up for her delays in other areas. And by asking me that question, this lady put me in the really awkward position of having to say that there is nothing especially grand about my child. I am looking for moments to brag on my child for saying the word "strawberry", and instead I get handed the opportunity to stutter "Ummm...well, she likes music. And letters."
Now, if I'd been a bit more quick witted, here are all the things I could have said that Diva Girl is gifted at:
-bear hugs
-tantrum throwing
-tutu twirling
-dazzling people with her smiles
-eating large amounts of pasta
-nose picking
-lining things up
-picking out fun outfits
-making mommy laugh
-keeping people guessing
-dare-deviling
-high pitched screams
-interpretive dance
-cuteness
I think that is plenty gifted.
Just don't ask though. Because if you wouldn't ask the question of a person with typical children, you probably shouldn't ask me either.
It is a classmate that inspired me to start posting again. No, not because she was so brilliant or encouraging, but because I need to warn you all. So listen up, normal people!
It is not ever appropriate to ask the mother of a child on the autism spectrum "so, what's your child gifted at?" Got that? Even if that is what pops into your brain the moment they say autism. Even if EVERY child you met on the spectrum happened to be a whiz at music or art or math. Even if you love the movie Rainman. Not ok.
Why? Because I had no good way to answer that. Because for an instant, I wanted to burst into tears. Because it is as ridiculous of a stereotype as "autistic children don't show affection". Yes, maybe some autistic children can play the piano by ear by her age, or read perfectly. She can't, but I'm not losing any sleep over it. It's not as though I need her to be gifted in some area so as to make up for her delays in other areas. And by asking me that question, this lady put me in the really awkward position of having to say that there is nothing especially grand about my child. I am looking for moments to brag on my child for saying the word "strawberry", and instead I get handed the opportunity to stutter "Ummm...well, she likes music. And letters."
Now, if I'd been a bit more quick witted, here are all the things I could have said that Diva Girl is gifted at:
-bear hugs
-tantrum throwing
-tutu twirling
-dazzling people with her smiles
-eating large amounts of pasta
-nose picking
-lining things up
-picking out fun outfits
-making mommy laugh
-keeping people guessing
-dare-deviling
-high pitched screams
-interpretive dance
-cuteness
I think that is plenty gifted.
Just don't ask though. Because if you wouldn't ask the question of a person with typical children, you probably shouldn't ask me either.
Thursday, September 2, 2010
Pickle moments
As much as I try to plan, these moments happen. You know, the moments when Diva Girl completely flips out over something that seems small and inconsequential. I've learned to never hand her a container of crackers without first checking to see that the cracker on top is not broken. I've learned to make sure that I don't put the spoon in the yogurt before setting it on the table. But there are some things beyond my control, and then it is "buh bye sane Diva Girl!" She cries. Throws herself on the floor. It is the end of the world (as we know it)!
These flip outs drive me a little nuts. I want to say "Just eat the cookie and get over it! So what if it's in two parts instead of one?"
But then I try to put myself in her shoes. I heard a comedian once talk about how when a kid loses his ballon, adults tend to brush it off and just tell them they can get another. He told us to think of our wallets floating away, how we would feel if someone told us we could just get another...we would cry like a little kid! So, I thought maybe I could think of how it would feel to get a broken cracker instead of a whole one.
And that's when it hit me....Pickles!
See, I hate pickles. I mean, really, really, HATE pickles. And there have been times that I have been ravenous and ordered a plain burger at a drive thru, and bite into it...only to discover a pickle. I won't lie, I have cried over it. Ugh, a pickle! You can't just tell me to pull it out and keep eating it or anything, because it still tastes like a pickle.
The pickle completely ruins anything it touches. Trust me.
So I thought of how I feel in that moment, when there is a pickle in my burger. And now when Diva Girl freaks out, I just think...she's having a pickle moment.
That I can understand.
These flip outs drive me a little nuts. I want to say "Just eat the cookie and get over it! So what if it's in two parts instead of one?"
But then I try to put myself in her shoes. I heard a comedian once talk about how when a kid loses his ballon, adults tend to brush it off and just tell them they can get another. He told us to think of our wallets floating away, how we would feel if someone told us we could just get another...we would cry like a little kid! So, I thought maybe I could think of how it would feel to get a broken cracker instead of a whole one.
And that's when it hit me....Pickles!
See, I hate pickles. I mean, really, really, HATE pickles. And there have been times that I have been ravenous and ordered a plain burger at a drive thru, and bite into it...only to discover a pickle. I won't lie, I have cried over it. Ugh, a pickle! You can't just tell me to pull it out and keep eating it or anything, because it still tastes like a pickle.
The pickle completely ruins anything it touches. Trust me.
So I thought of how I feel in that moment, when there is a pickle in my burger. And now when Diva Girl freaks out, I just think...she's having a pickle moment.
That I can understand.
Sunday, August 29, 2010
Oh Dear....
Really? Am I really doing this? Am I really going back to school, full time, in just two days?
HAVE I LOST MY MIND?!?
I can't even keep up with my laundry. My apartment is in a permanent state of disarray. My daughter nearly always needs a bath. And I think that adding in 12 hours of class a week, plus a practicum, sounds like a good idea? Right now it doesn't even seem doable!
But then I look at my kids. They are beautiful and they are smart and they look at me with these trusting eyes...and I know it's up to me. I have to do this for me and for them. Yes, it will mean some sacrifice on all of our parts. And I can't pretend to know how we will manage the next few years. But when it's all said and done and I walk across that stage in three years (THREE YEARS?! ack!), it will be worth it.
Right?
HAVE I LOST MY MIND?!?
I can't even keep up with my laundry. My apartment is in a permanent state of disarray. My daughter nearly always needs a bath. And I think that adding in 12 hours of class a week, plus a practicum, sounds like a good idea? Right now it doesn't even seem doable!
But then I look at my kids. They are beautiful and they are smart and they look at me with these trusting eyes...and I know it's up to me. I have to do this for me and for them. Yes, it will mean some sacrifice on all of our parts. And I can't pretend to know how we will manage the next few years. But when it's all said and done and I walk across that stage in three years (THREE YEARS?! ack!), it will be worth it.
Right?
Monday, August 23, 2010
The Boy
I've got mommy guilt and I've got it bad.
He's only 6 months old and I'm already worried about how little I talk about him. People ask me how things are and I launch easily into a list of things that are going on with Diva Girl...the good, the bad, the progress, the way she has found the right screaming pitch to drive me crazy. Oh, and Rascal? He's good. Sleeps well. No teeth yet.
Ouch.
So that is what I was thinking about this morning, as I lay next to him in bed. I watched his sweet sleeping face and I though "Please, never have such issues that people always ask me how you are in worried tones...but be so wonderful that I always have something about you that I can't wait to share"
I have all these hopes and dreams for him. I realize that while I am, of course, fearful of him ending up on the spectrum, I don't dwell on it much. Sometimes I am equally terrified of what will happen when he reaches the age of three and is completely normal...what on earth do I know about raising a child without the aid of a team of therapists? But either way, my prayers for him don't change. I want him to know love, in all the different ways it appears in life. I want him to know how to love as a friend, loyal and honest. I pray that he discovers the joy of loving a wife, a working and joyful love. And of course, I hope he will (in the faaaar future) know what it's like to love a child, the complete surprisingly strong and pure love that threatens to overwhelm you the first time you hold them in your arms.
For now, I just want to teach him that I love him, that daddy and sister love him, and that God loves him. And I look forward to his little belly scootching turning into crawling. I am enjoying his wonderfully sunny personality and his quick smile! Yes, he is a good sleeper, but is also hilarious in his tendency to take over the whole bed and wake up in a completely different position than he drifted off in. He adores his sister, and will often look at her as though she is the world...even after she just bonked him over the head with a sippy cup.
Baby boy, you bring me joy! I won't forget to share that with the world.
Wednesday, August 18, 2010
Tell me something I don't know
.I don't care how many evaluations we have to undergo with Diva Girl, I doubt I will ever grow to dread them any less. There is something about having to watch your child be tested and see that evaluator scribble down all the ways she is coming short...well, it can be plain old depressing.
Today we had a speech evaluation for Social Security Income. Apparently, they needed to make sure we're not pulling a fast one on them. Alright, fine, I have no problem taking her in to prove how behind she is *sigh*
We show up and sit in the second nastiest waiting room I've ever been in (the first involved blood stained chairs, so I am pretty sure the first place spot is reserved for all time). Diva Girl was covered in dust in a matter of minutes, and I had the joy of digging an ancient skittle out of her mouth. I could tell this was gonna be good, but little did I know...
Granted, the evaluator herself was a sweet lady. She tried to be as sensitive as she could while we went over G's medical history and blah blah blah. Apparently SSI hadn't sent her any info on us, because she was happily surprised when I told her G has a formal diagnosis and is getting therapy. You could read on her face that she was relieved that she would not have to be the person giving me the news that my dear daughter has issues.
Of course, Diva Girl did awful. She wouldn't identify a darn thing, she kept flicking the lights off, and we spent most of the time trying to keep her away from the computer and paper cutter (seriously, who conducts evaluations in their actual office?!?). I think there were 5 identifiable words spoken the entire time we were there. But what else do they expect when they put my kid in a strange room with a strange lady? If I get a copy of this evaluation, please remind me that the results mean nothing and that I don't care that she will say something like "she is in the bottom 1%" Because the good news is that I can't imagine them not approving her case. And the better news is that she is doing better than any evaluation can measure. If she doesn't want to point to a ball when a stranger asks her to, fine...what matters is that she can look me in the eyes and say "ball!" when I hand one to her. And who cares if she didn't want to look at a picture of a baby? What makes me proud is that she came up to Husband and I and said "Rascal sleeping" one night last week (Yes, she knows who he is! And what it means when mommy takes him back to the bedroom! And mommy totally started crying and hugging her like a crazy lady when this happened!)
I see progress. I hear words. So who really cares about evaluations anyway?
Today we had a speech evaluation for Social Security Income. Apparently, they needed to make sure we're not pulling a fast one on them. Alright, fine, I have no problem taking her in to prove how behind she is *sigh*
We show up and sit in the second nastiest waiting room I've ever been in (the first involved blood stained chairs, so I am pretty sure the first place spot is reserved for all time). Diva Girl was covered in dust in a matter of minutes, and I had the joy of digging an ancient skittle out of her mouth. I could tell this was gonna be good, but little did I know...
Granted, the evaluator herself was a sweet lady. She tried to be as sensitive as she could while we went over G's medical history and blah blah blah. Apparently SSI hadn't sent her any info on us, because she was happily surprised when I told her G has a formal diagnosis and is getting therapy. You could read on her face that she was relieved that she would not have to be the person giving me the news that my dear daughter has issues.
Of course, Diva Girl did awful. She wouldn't identify a darn thing, she kept flicking the lights off, and we spent most of the time trying to keep her away from the computer and paper cutter (seriously, who conducts evaluations in their actual office?!?). I think there were 5 identifiable words spoken the entire time we were there. But what else do they expect when they put my kid in a strange room with a strange lady? If I get a copy of this evaluation, please remind me that the results mean nothing and that I don't care that she will say something like "she is in the bottom 1%" Because the good news is that I can't imagine them not approving her case. And the better news is that she is doing better than any evaluation can measure. If she doesn't want to point to a ball when a stranger asks her to, fine...what matters is that she can look me in the eyes and say "ball!" when I hand one to her. And who cares if she didn't want to look at a picture of a baby? What makes me proud is that she came up to Husband and I and said "Rascal sleeping" one night last week (Yes, she knows who he is! And what it means when mommy takes him back to the bedroom! And mommy totally started crying and hugging her like a crazy lady when this happened!)
I see progress. I hear words. So who really cares about evaluations anyway?
Friday, August 6, 2010
He still loves me!
It's been five years since I vowed to be his wife for richer or poorer, in sickness and in health, for as long as we both shall live. And I think we've done our best to test out those vows in these five years. And as I held his hand tonight, a part of me is still in awe that he chose me. That he loves me. That we are still holding hands, through it all.
When we came back from our honeymoon and landed in reality, with no jobs and plenty of school left, he held my hand and told me we would find a way.
When I broke down and quit school and felt like a failure, he held my hand and made me smile again.
When I saw those two pink lines and wasn't sure if I should laugh or cry, he held my hand and let me know how excited he was...and I knew he was going to be an amazing father to our little one.
When we had to swallow our pride to provide a home for our baby, he held my hand and reassured me that we were doing the right thing.
When it felt like we had nothing, he held my hand and I knew we had what was important.
When he told me he was going back to school, he held my hand and gave me hope.
When we lost our babies, he held my hand and grieved with me.
When Diva Girl began to slip away and we began the journey of autism, he held my hand and cried with me. And then he helped me have the strength to be the mother she needs me to be.
When I gave birth to our son in the most unexpected of circumstances, he held my hand and was my rock.
When he graduated and made me the proudest woman alive, he held my hand and told me it was my turn.
So here we are. Five years of challenges faced, joys shared, and love grown. I love him today with a depth that I could not truly imagine on the day I said "I do". And I pray that he will hold my hand through all of the adventures that life has yet to bring us. Let's rise to the occasion together!
When we came back from our honeymoon and landed in reality, with no jobs and plenty of school left, he held my hand and told me we would find a way.
When I broke down and quit school and felt like a failure, he held my hand and made me smile again.
When I saw those two pink lines and wasn't sure if I should laugh or cry, he held my hand and let me know how excited he was...and I knew he was going to be an amazing father to our little one.
When we had to swallow our pride to provide a home for our baby, he held my hand and reassured me that we were doing the right thing.
When it felt like we had nothing, he held my hand and I knew we had what was important.
When he told me he was going back to school, he held my hand and gave me hope.
When we lost our babies, he held my hand and grieved with me.
When Diva Girl began to slip away and we began the journey of autism, he held my hand and cried with me. And then he helped me have the strength to be the mother she needs me to be.
When I gave birth to our son in the most unexpected of circumstances, he held my hand and was my rock.
When he graduated and made me the proudest woman alive, he held my hand and told me it was my turn.
So here we are. Five years of challenges faced, joys shared, and love grown. I love him today with a depth that I could not truly imagine on the day I said "I do". And I pray that he will hold my hand through all of the adventures that life has yet to bring us. Let's rise to the occasion together!
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