Autism can be a totally KO.
It can send a parent reeling.
It is not what anybody is expecting when buying decorations for the nursery and listening to the lamaze teacher explain how a woman should breathe when the time comes to push a child into the universe.
It isn't the way anybody's life is supposed to be.
But autism is reality for way, way too many parents.
Some of them are truly amazing people.
They are doing what so many of us wish we had the energy to do. They are getting up each and every day and fighting the good fight -- for their own children and for mine.
Thank you, thank you, thank you.
http://blog.autismspeaks.org/2010/05/18/ursitti-yes/
May 21, 2010
My Child's Faith
My beautiful boy is wrapping up his first year of public school.
I drove him to school that first morning, last August, with so many emotions.
None of them were what you'd expect of a mom dropping off her first-born for the start of kindergarten. I didn't have that sense of "Look at my baby, all grown up." I didn't mourn the passing of the preschool years. You see, my blissful new-mommy days were very short-lived. It seemed they were over practically before they began -- although I still can remember, when I allow myself, that brief little window of time when I thought my life was perfect and my baby the most beautiful child ever born.
Even now, I can't type those words without tears.
But there would be no tears for me when I dropped dear Daniel off for his first day of kindergarten, not even as I watched him go into the building with his wonderful, God-send of a teacher, Ms. H. Unlike all the other kindergarten parents, I did not walk my child to his classroom. I didn't dare. I did not think I would be able to walk out on my own two feet if I saw him panic.
So I dropped him at the curb, just like we had practiced with Ms. H the week before, gave him a kiss, and watched until the doors closed behind him and he disappeared from sight.
No tears. I didn't really expect any from him. He is a tough kid. But I wasn't so sure about my own eyes.
The tear ducts must have been on strike. They certainly had reason to be. Talk about overuse.
I made it all the way back home without a single tear. But I was so very, very sad that August morning.
Sad that my son still could not say a single word.
Sad that his father was no longer living with us.
Sad that I could not even explain to my sweet little boy what in the world was going on, both with his school life and with his home life. He just didn't, and still doesn't, have the receptive language to process words like "new" or "kindergarten."
And I was scared.
Scared about how he would transition to this new, BIG school after two-years at a school where he felt so comfortable, where the teachers knew him so well, where the kids accepted him and tried to help, where there were so many loving people around to keep him "in the game."
Scared how I was going to make it, how I was going to be who and what my children needed me to be.
Scared, really, about just getting through each day without a breakdown.
I am sure Daniel was nervous, too -- how could he not have been?
And, yet, as I tried to take something positive away from that morning -- that sad, sad morning at one of the most difficult points of my life -- I didn't really have to think that hard to find it, that one beautiful thing about which to rejoice.
My little boy walked into that great big school building on his first morning of kindergarten like a champ.
We had practiced. Thanks to his wonderful teacher, we had visited the school many times in preparation for the big day. I had told her just a little about the sadness going on at home, so she would know what kind of stress was going on in his life.
I made a picture book for him to bring, full of photos of Daniel with his family and of him doing his favorite things. I asked that his teacher read it to his classmates. I tried to explain to these children, in words they could understand, that Daniel is "different" in some ways, the most noticeable being that he cannot talk -- but that he is like them in many others. And that even though they frequently would wonder if he was hearing them, that he really was listening.
I felt like I had done all I could to make Daniel feel as comfortable as possible on the big day.
But I worried. I prayed.
And I watched ...
He put the big red backpack over his arms, gave me a kiss, took his teacher's hand, and walked away from me like .... well, like a great big grown-up boy.
He couldn't ask me a single question about what to expect. He couldn't ask what was going to happen during the day or if any of the same kids and teachers from his old school would be here at the new one (and, unfortunately, none of them would be). He couldn't ask why or how long. He couldn't ask a darn thing.
And, yet, off he went.
And I marveled in pure amazement ....
What a testament to my child's strength.
What a symbol of his trust in me.
To think that he would go into that great big building, with nobody but strangers surrounding him .... to think that he would just walk into the unknown because he sensed it was what I was expecting of him ....
What faith that child must have in me.
How could I, as remarkably imperfect as I am, deserve such faith?
It is the highest compliment I have ever, and most assuredly will ever, be paid.
My little boy soon will be transitioning to a special program for the summer. He will be attending a small private school for young children with autism. It isn't cheap, but I know he will receive quality attention and services there, and I am so grateful he has the opportunity.
I ask that you all please take some moments throughout the summer to send prayers or good wishes Daniel's way. Please pray, in whatever way you choose, that he has a wonderful summer, with accomplishments big and small.
And pray for me, too. Pray that I remember, in my weakest moments, how much trust my little boy has placed in me -- a trust so great that I still have yet to truly earn it. Pray that I become a stronger and better mother with each passing year, and that one day I can look back and think I really was the kind of mother to deserve such an amazing, trusting love.
I drove him to school that first morning, last August, with so many emotions.
None of them were what you'd expect of a mom dropping off her first-born for the start of kindergarten. I didn't have that sense of "Look at my baby, all grown up." I didn't mourn the passing of the preschool years. You see, my blissful new-mommy days were very short-lived. It seemed they were over practically before they began -- although I still can remember, when I allow myself, that brief little window of time when I thought my life was perfect and my baby the most beautiful child ever born.
Even now, I can't type those words without tears.
But there would be no tears for me when I dropped dear Daniel off for his first day of kindergarten, not even as I watched him go into the building with his wonderful, God-send of a teacher, Ms. H. Unlike all the other kindergarten parents, I did not walk my child to his classroom. I didn't dare. I did not think I would be able to walk out on my own two feet if I saw him panic.
So I dropped him at the curb, just like we had practiced with Ms. H the week before, gave him a kiss, and watched until the doors closed behind him and he disappeared from sight.
No tears. I didn't really expect any from him. He is a tough kid. But I wasn't so sure about my own eyes.
The tear ducts must have been on strike. They certainly had reason to be. Talk about overuse.
I made it all the way back home without a single tear. But I was so very, very sad that August morning.
Sad that my son still could not say a single word.
Sad that his father was no longer living with us.
Sad that I could not even explain to my sweet little boy what in the world was going on, both with his school life and with his home life. He just didn't, and still doesn't, have the receptive language to process words like "new" or "kindergarten."
And I was scared.
Scared about how he would transition to this new, BIG school after two-years at a school where he felt so comfortable, where the teachers knew him so well, where the kids accepted him and tried to help, where there were so many loving people around to keep him "in the game."
Scared how I was going to make it, how I was going to be who and what my children needed me to be.
Scared, really, about just getting through each day without a breakdown.
I am sure Daniel was nervous, too -- how could he not have been?
And, yet, as I tried to take something positive away from that morning -- that sad, sad morning at one of the most difficult points of my life -- I didn't really have to think that hard to find it, that one beautiful thing about which to rejoice.
My little boy walked into that great big school building on his first morning of kindergarten like a champ.
We had practiced. Thanks to his wonderful teacher, we had visited the school many times in preparation for the big day. I had told her just a little about the sadness going on at home, so she would know what kind of stress was going on in his life.
I made a picture book for him to bring, full of photos of Daniel with his family and of him doing his favorite things. I asked that his teacher read it to his classmates. I tried to explain to these children, in words they could understand, that Daniel is "different" in some ways, the most noticeable being that he cannot talk -- but that he is like them in many others. And that even though they frequently would wonder if he was hearing them, that he really was listening.
I felt like I had done all I could to make Daniel feel as comfortable as possible on the big day.
But I worried. I prayed.
And I watched ...
He put the big red backpack over his arms, gave me a kiss, took his teacher's hand, and walked away from me like .... well, like a great big grown-up boy.
He couldn't ask me a single question about what to expect. He couldn't ask what was going to happen during the day or if any of the same kids and teachers from his old school would be here at the new one (and, unfortunately, none of them would be). He couldn't ask why or how long. He couldn't ask a darn thing.
And, yet, off he went.
And I marveled in pure amazement ....
What a testament to my child's strength.
What a symbol of his trust in me.
To think that he would go into that great big building, with nobody but strangers surrounding him .... to think that he would just walk into the unknown because he sensed it was what I was expecting of him ....
What faith that child must have in me.
How could I, as remarkably imperfect as I am, deserve such faith?
It is the highest compliment I have ever, and most assuredly will ever, be paid.
My little boy soon will be transitioning to a special program for the summer. He will be attending a small private school for young children with autism. It isn't cheap, but I know he will receive quality attention and services there, and I am so grateful he has the opportunity.
I ask that you all please take some moments throughout the summer to send prayers or good wishes Daniel's way. Please pray, in whatever way you choose, that he has a wonderful summer, with accomplishments big and small.
And pray for me, too. Pray that I remember, in my weakest moments, how much trust my little boy has placed in me -- a trust so great that I still have yet to truly earn it. Pray that I become a stronger and better mother with each passing year, and that one day I can look back and think I really was the kind of mother to deserve such an amazing, trusting love.
May 16, 2010
Dancing On
I attended my daughter's dance recital today.
She has been having a rough time lately. She has the language, the intelligence, and the maturity of a child well beyond her years. Which is a blessing. BUT it also is a bit of a hardship when your family life is not at all what it should be.
She thinks about what is taking place in her life on a different level than the "typical" four-year-old. She wonders, and questions, and worries like a much older child ... and, yet, she still has to process all her thoughts through a four-year-old brain.
My most important goal for my amazing daughter today was for her to make it through the recital with no tears. You see, she has been having some major separation anxiety recently. And, even though I was going to be the one curling her hair, helping her put on the sparkly costume, and brushing the hint of eye shadow across her lids.... I would not be the one getting to put her to bed tonight.
I would not be bringing her home.
For whatever reason, my daughter has found it so very difficult to say goodbye to me lately. Even when she knows I will be the one picking her up from school, she still clings to me in the morning when I drop her off -- something she hasn't done since she first started preschool at the age of two.
I have my own theories as to why she is having these problems. The bottom line is that I can only try to make the separation easier. And, oh, how I want to make it easier.
But, first, I wanted to get through the dance recital in as happy a manner as possible given all the tears and meltdowns of the past few days.
As I said, I just wanted my daughter to get through her recital with no tears.
Goal achieved. But at moments, it was touch and go.
In so many ways, both verbal and nonverbal, my daughter told me today how much she is hurting. In so many ways, she told me how very much she worries about the length of each separation. In so many ways, she told me how this family situation would NOT be the one she would choose if she were in charge.
I know, Olivia, and I am so very, very sorry.
But .....
She had some happy moments during the day. Thank God for the extraordinary Cassie, the buddy who brings smiles and comfort even on tough days.
I know what it is like for me to have a friend like that at 34.
It must be JUST as important, if not infinitely more so, when you are merely four, and even though you have been blessed with so much language, you still don't have the coping mechanisms you need to get through so much chaos and change.
Heck, I am still finding my own coping mechanisms, and I'm the adult.
We made it through the day, and, surely, the next recital will be better. There will be a little less stress, a little less tension.
Surely.
In the meantime, I want to remember something her dance teacher said before the show.
She thanked the parents for sending their daughters to her classes. She told us what a blessing our children were in her life. She also told us how she believes God works through our children to show us what really matters in this world, what really is worth treasuring -- how our children embody the true meaning of life.
Ms. Jo-Anne, I couldn't have said it better myself.
She has been having a rough time lately. She has the language, the intelligence, and the maturity of a child well beyond her years. Which is a blessing. BUT it also is a bit of a hardship when your family life is not at all what it should be.
She thinks about what is taking place in her life on a different level than the "typical" four-year-old. She wonders, and questions, and worries like a much older child ... and, yet, she still has to process all her thoughts through a four-year-old brain.
My most important goal for my amazing daughter today was for her to make it through the recital with no tears. You see, she has been having some major separation anxiety recently. And, even though I was going to be the one curling her hair, helping her put on the sparkly costume, and brushing the hint of eye shadow across her lids.... I would not be the one getting to put her to bed tonight.
I would not be bringing her home.
For whatever reason, my daughter has found it so very difficult to say goodbye to me lately. Even when she knows I will be the one picking her up from school, she still clings to me in the morning when I drop her off -- something she hasn't done since she first started preschool at the age of two.
I have my own theories as to why she is having these problems. The bottom line is that I can only try to make the separation easier. And, oh, how I want to make it easier.
But, first, I wanted to get through the dance recital in as happy a manner as possible given all the tears and meltdowns of the past few days.
As I said, I just wanted my daughter to get through her recital with no tears.
Goal achieved. But at moments, it was touch and go.
In so many ways, both verbal and nonverbal, my daughter told me today how much she is hurting. In so many ways, she told me how very much she worries about the length of each separation. In so many ways, she told me how this family situation would NOT be the one she would choose if she were in charge.
I know, Olivia, and I am so very, very sorry.
But .....
She had some happy moments during the day. Thank God for the extraordinary Cassie, the buddy who brings smiles and comfort even on tough days.
I know what it is like for me to have a friend like that at 34.
It must be JUST as important, if not infinitely more so, when you are merely four, and even though you have been blessed with so much language, you still don't have the coping mechanisms you need to get through so much chaos and change.
Heck, I am still finding my own coping mechanisms, and I'm the adult.
We made it through the day, and, surely, the next recital will be better. There will be a little less stress, a little less tension.
Surely.
In the meantime, I want to remember something her dance teacher said before the show.
She thanked the parents for sending their daughters to her classes. She told us what a blessing our children were in her life. She also told us how she believes God works through our children to show us what really matters in this world, what really is worth treasuring -- how our children embody the true meaning of life.
Ms. Jo-Anne, I couldn't have said it better myself.
May 13, 2010
FRUSTRATION
That is putting it mildly.
Talk about feeling ....
A-L-O-N-E.
At moments, I not only feel alone, I feel a little as if THE WALLS ARE CLOSING IN.
Why? Why am I sitting here ALONE (with my two kids asleep in their beds) trying to figure out how to make money stretch? Trying to figure out how long I can keep paying for therapy for my nonverbal, autistic six-year-old son without losing my sanity about how much more money is going OUT than coming IN?
I could count my worries.
But I would run out of fingers.
And toes.
And, really, what good would it do?
The worries aren't going anywhere.
So ....
That being said .....
What else can I do but write?
I'll try to remember a few things in the past week that have made me smile.
I'll start with --- DUCKS. Yes, ducks.
I was on my front porch early last Saturday morning, lost in my thoughts. I look up to see two ducks walking across my yard.
I think they were a couple. I don't know anything about ducks, but they had very different coloring, as if one were a female and one a male.
And they seemed to be bonded. They stuck close together.
So, I'd like to think of them as a united pair.
I said to myself, "What the hell! There are ducks in my yard." I got some bread to feed them, and then I watched.
Man, how they stuck close together.
Even when one of them waddled into the road, oblivious to the threat of cars, the other waddled nearby, right into the same road.
I wondered how many miles they have travelled together. How many different places have they been, how many waters have they flown over, how many nests have they built and how many ducklings have they cared for?
Did they ever have a nest invaded by predators? Did they ever lose a duckling to a fox, an eagle, a crocodile?
I thought the odds were fairly decent that these ducks have endured such a loss. And, mere ducks though they be, I have no doubt that they would have grieved, in their own way, after such a disaster.
And, yet, here they were, waddling out into the road, side-by-side.
(I have since learned -- thank you, Google -- that many species of ducks do, indeed, form "pair bonds." And, also, with most kinds of ducks, it is the FEMALES who do all the quacking while the males stay mostly silent. No kidding!)
In addition to the ducks, I also need to remember the words of my four-year-old daughter, spoken a few mornings ago, as I pulled out of the driveway to take her to school.
"Mama, you are really smart."
Well, thank you, Olivia.
"But I am smarter, don't ya think."
Or what she said to me yesterday.
"Mama, I have so many ideas. And I am really smart. God made me that way."
Hah! At least there is ONE female in this house not lacking in self-confidence.
And, finally, I need to remember the people who keep me from truly being alone.
My parents could NEVER get enough thanks for what they do. Talk about a support system, a foundation. I truly hope there is a Heaven ... because they could never, EVER, be adequately repaid in this lifetime for what they have done for me and my kids.
There is my friend, mentioned here so frequently, who listened to me yet again tonight.
"Will things ever get better," I asked her.
Yes, they will, she told me.
"But, right now, I don't see it."
But they will, she assured me.
"But I need a job. I need to make some money. I should have done more for Daniel this past year. I feel like I wasted the whole school year, trying to deal with all of this grief, all of this crap, and I haven't worked with him enough or taught him anything."
You will find one; you will figure it all out, she said. Once you get past this. And you will change what you have the power to change. And do the best you can with everything else. And even if you have to cut back on therapy, it won't matter, because you are his mother. And you work with him all the time. You were working with him at the birthday party last weekend -- I saw you.
Oh, dear friend, please know how much I mean it when I say, "I love you."
And there is another dear friend, who also listened to me today, as I tried to explain just how difficult it is for me to process everything taking place in my life. I told my friend how when my doorbell rang this afternoon I actually was somewhat fearful about opening the door .... what kind of new misery might be waiting on the other side??? And, what do you know, it was just a guy wanting to sign me up for Dish-TV.
Oh, to have such friends. Friends who listen with their whole hearts. Who want to jump right in and help you, even though there is a limit to what they can do. Friends who hurt for you, who want a sense of normalcy to return to your life and who want to celebrate with you when it happens.
They ease my frustrations, these people, even thought they can't make them go away.
They remind me that there are all kinds of "pair bonds" in this world, even after you lose the one you thought would last forever.
And that the ones that really matter, the ones really worth keeping and cherishing, are the ones that will waddle along with you, step for step, even when you aren't sure where you are going and when you will ever get there.
Talk about feeling ....
A-L-O-N-E.
At moments, I not only feel alone, I feel a little as if THE WALLS ARE CLOSING IN.
Why? Why am I sitting here ALONE (with my two kids asleep in their beds) trying to figure out how to make money stretch? Trying to figure out how long I can keep paying for therapy for my nonverbal, autistic six-year-old son without losing my sanity about how much more money is going OUT than coming IN?
I could count my worries.
But I would run out of fingers.
And toes.
And, really, what good would it do?
The worries aren't going anywhere.
So ....
That being said .....
What else can I do but write?
I'll try to remember a few things in the past week that have made me smile.
I'll start with --- DUCKS. Yes, ducks.
I was on my front porch early last Saturday morning, lost in my thoughts. I look up to see two ducks walking across my yard.
I think they were a couple. I don't know anything about ducks, but they had very different coloring, as if one were a female and one a male.
And they seemed to be bonded. They stuck close together.
So, I'd like to think of them as a united pair.
I said to myself, "What the hell! There are ducks in my yard." I got some bread to feed them, and then I watched.
Man, how they stuck close together.
Even when one of them waddled into the road, oblivious to the threat of cars, the other waddled nearby, right into the same road.
I wondered how many miles they have travelled together. How many different places have they been, how many waters have they flown over, how many nests have they built and how many ducklings have they cared for?
Did they ever have a nest invaded by predators? Did they ever lose a duckling to a fox, an eagle, a crocodile?
I thought the odds were fairly decent that these ducks have endured such a loss. And, mere ducks though they be, I have no doubt that they would have grieved, in their own way, after such a disaster.
And, yet, here they were, waddling out into the road, side-by-side.
(I have since learned -- thank you, Google -- that many species of ducks do, indeed, form "pair bonds." And, also, with most kinds of ducks, it is the FEMALES who do all the quacking while the males stay mostly silent. No kidding!)
In addition to the ducks, I also need to remember the words of my four-year-old daughter, spoken a few mornings ago, as I pulled out of the driveway to take her to school.
"Mama, you are really smart."
Well, thank you, Olivia.
"But I am smarter, don't ya think."
Or what she said to me yesterday.
"Mama, I have so many ideas. And I am really smart. God made me that way."
Hah! At least there is ONE female in this house not lacking in self-confidence.
And, finally, I need to remember the people who keep me from truly being alone.
My parents could NEVER get enough thanks for what they do. Talk about a support system, a foundation. I truly hope there is a Heaven ... because they could never, EVER, be adequately repaid in this lifetime for what they have done for me and my kids.
There is my friend, mentioned here so frequently, who listened to me yet again tonight.
"Will things ever get better," I asked her.
Yes, they will, she told me.
"But, right now, I don't see it."
But they will, she assured me.
"But I need a job. I need to make some money. I should have done more for Daniel this past year. I feel like I wasted the whole school year, trying to deal with all of this grief, all of this crap, and I haven't worked with him enough or taught him anything."
You will find one; you will figure it all out, she said. Once you get past this. And you will change what you have the power to change. And do the best you can with everything else. And even if you have to cut back on therapy, it won't matter, because you are his mother. And you work with him all the time. You were working with him at the birthday party last weekend -- I saw you.
Oh, dear friend, please know how much I mean it when I say, "I love you."
And there is another dear friend, who also listened to me today, as I tried to explain just how difficult it is for me to process everything taking place in my life. I told my friend how when my doorbell rang this afternoon I actually was somewhat fearful about opening the door .... what kind of new misery might be waiting on the other side??? And, what do you know, it was just a guy wanting to sign me up for Dish-TV.
Oh, to have such friends. Friends who listen with their whole hearts. Who want to jump right in and help you, even though there is a limit to what they can do. Friends who hurt for you, who want a sense of normalcy to return to your life and who want to celebrate with you when it happens.
They ease my frustrations, these people, even thought they can't make them go away.
They remind me that there are all kinds of "pair bonds" in this world, even after you lose the one you thought would last forever.
And that the ones that really matter, the ones really worth keeping and cherishing, are the ones that will waddle along with you, step for step, even when you aren't sure where you are going and when you will ever get there.
May 5, 2010
If You'd Allow Me to Stop Smelling the Roses for Just a Minute
So, I managed to "happy blog" for 14 straight days.
It is not like I performed brain surgery, or finished a triathalon, or got elected to national office.
I just wrote for 14 days about stuff that makes me happy.
If you only knew the circus, the drama, that is my life, you might realize why that is not such a small feat.
Here are some of the reasons why:
My son, who is gorgeous beyond words, and six-years-old, cannot talk.
At all.
Can you imagine that for just a moment? You are going through life without the ability to express a single thought. You can't tell someone if you have a headache. You can't ask what is on the agenda for the day. You can't say, "Hey, why am I getting in the car right now? Where are we going and how long will we be there." You can't even tell someone what the #^$& you'd like for dinner.
I don't know what to do to best help him.
I know he will ALWAYS need a great deal of assistance.
I would literally rip a kidney out of my body with a sharp-edged spoon if it would make him talk.
I would, I really would.
I would close my eyes knowing that I had lived my last day on this Earth if my son would wake up the next day and be able to talk, and learn, and play like all the typical six-year-old children I see at his school.
I wouldn't even need to see it. Just to know that it would happen in my absence would be enough.
And there is my daughter, just four-years-old, who is wise beyond her years.
She is hurting. Oh, how she is hurting.
I am trying to take care of both of them the best I can.
By myself.
Talk about frustration.
And there is plenty of that to go around.
My son shows frustration in the only ways he can. He yells, he cries, he sometimes strikes out at me.
I don't always handle it with the patience he deserves.
I fail him. So often, I fail him. If only, if only, if only ... If only I could be stronger, if only I could have more energy, if only I could find the answers.
My daughter shows her frustration in ways that aren't quite as challenging. But her words strike at my heart.
I can't answer her questions about what has happened to her family.
I can try. But there are no answers, none that make sense anyway.
I can only try to imagine what it is like to have a sibling so very different from the "norm."
One day last week she got upset with her brother. He gives her plenty of reasons to, in ways so very different than that of a typical sibling.
He is never purposefully mean to her. He simply wouldn't know how. Because it would never occur to him to be mean. But he can be sneaky. He can steal her favorite foods like a bandit. He can run off with her favorite toy, even though he has no desire to pay with it, because Daniel doesn't know what it means to "play" with toys.
Pretty minor offenses when you consider the childhood torture that some typical siblings can inflict on each other.
But what makes Daniel so frustrating for Olivia, at least what I imagine must be so frustrating for her, is his lack of response.
So much of the time, Olivia lives in a magical fantasy world. I sometimes hear her talking and think she is speaking to me, only to find her with her dolls -- they are doing any number of things and engaging in remarkably grown-up conversations, these Barbies and stuffed animals.
Wouldn't it be nice if her sibling could join her in these fantasy playworlds, even if he was putting a boyish spin on things.
Not a chance.
Olivia has moments when she quite obviously is a four-year-old. And then there are moments when she dazzles me with her intellect, her inquisitiveness, her maturity.
She has NEVER, not once, asked me why her brother cannot talk.
She has commented on it to others, but never in a hurtful, or even in a questioning way.
Once, when she a young two, she said to me, "Daniel cannot talk. But he sure is a good swimmer. And he can open his raisin box all by himself."
Oh ..... my dear, sweet girl.
I frequently hear her pointing out her brother to children she meets at playgrounds.
"That is my brother Daniel. He cannot talk."
The first time I heard her say that, a pain ripped through my entire body. But just for a moment.
It is the truth. It is reality; it is her reality just like it is mine, just like it is Daniel's.
A few days ago, for the first time, Olivia showed her frustration with autism in words.
Daniel had stolen one of her PB crackers. It had been a long day. And Lord knows she has so many troubling things going on in her life apart from her brother's disability. She was tired. The theft was too much.
"Mama, I want a brother who..."
And she stops herself. And starts again.
"Mama, I want my brother Daniel to LISTEN to me."
"I NEED him to listen to me."
Oh................ Olivia.
What can I say?
What can I possibly say?
So, I said something like this, the whole time reaching for the right words, something to recognize her own pain in all of this while also acknowledging her brother's unfair ride in life, "I know, baby. I want him to listen to you, too. And I want him to listen to me. But it isn't easy for him. I am trying to help him listen better. And we have got to try to help him listen to both of us, even though it is hard."
"Mama, I am ready for Daniel to talk NOW!"
I scoop her into my arms, because, really, what else is there to do???
"I know, baby."
"Me, too."
It is not like I performed brain surgery, or finished a triathalon, or got elected to national office.
I just wrote for 14 days about stuff that makes me happy.
If you only knew the circus, the drama, that is my life, you might realize why that is not such a small feat.
Here are some of the reasons why:
My son, who is gorgeous beyond words, and six-years-old, cannot talk.
At all.
Can you imagine that for just a moment? You are going through life without the ability to express a single thought. You can't tell someone if you have a headache. You can't ask what is on the agenda for the day. You can't say, "Hey, why am I getting in the car right now? Where are we going and how long will we be there." You can't even tell someone what the #^$& you'd like for dinner.
I don't know what to do to best help him.
I know he will ALWAYS need a great deal of assistance.
I would literally rip a kidney out of my body with a sharp-edged spoon if it would make him talk.
I would, I really would.
I would close my eyes knowing that I had lived my last day on this Earth if my son would wake up the next day and be able to talk, and learn, and play like all the typical six-year-old children I see at his school.
I wouldn't even need to see it. Just to know that it would happen in my absence would be enough.
And there is my daughter, just four-years-old, who is wise beyond her years.
She is hurting. Oh, how she is hurting.
I am trying to take care of both of them the best I can.
By myself.
Talk about frustration.
And there is plenty of that to go around.
My son shows frustration in the only ways he can. He yells, he cries, he sometimes strikes out at me.
I don't always handle it with the patience he deserves.
I fail him. So often, I fail him. If only, if only, if only ... If only I could be stronger, if only I could have more energy, if only I could find the answers.
My daughter shows her frustration in ways that aren't quite as challenging. But her words strike at my heart.
I can't answer her questions about what has happened to her family.
I can try. But there are no answers, none that make sense anyway.
I can only try to imagine what it is like to have a sibling so very different from the "norm."
One day last week she got upset with her brother. He gives her plenty of reasons to, in ways so very different than that of a typical sibling.
He is never purposefully mean to her. He simply wouldn't know how. Because it would never occur to him to be mean. But he can be sneaky. He can steal her favorite foods like a bandit. He can run off with her favorite toy, even though he has no desire to pay with it, because Daniel doesn't know what it means to "play" with toys.
Pretty minor offenses when you consider the childhood torture that some typical siblings can inflict on each other.
But what makes Daniel so frustrating for Olivia, at least what I imagine must be so frustrating for her, is his lack of response.
So much of the time, Olivia lives in a magical fantasy world. I sometimes hear her talking and think she is speaking to me, only to find her with her dolls -- they are doing any number of things and engaging in remarkably grown-up conversations, these Barbies and stuffed animals.
Wouldn't it be nice if her sibling could join her in these fantasy playworlds, even if he was putting a boyish spin on things.
Not a chance.
Olivia has moments when she quite obviously is a four-year-old. And then there are moments when she dazzles me with her intellect, her inquisitiveness, her maturity.
She has NEVER, not once, asked me why her brother cannot talk.
She has commented on it to others, but never in a hurtful, or even in a questioning way.
Once, when she a young two, she said to me, "Daniel cannot talk. But he sure is a good swimmer. And he can open his raisin box all by himself."
Oh ..... my dear, sweet girl.
I frequently hear her pointing out her brother to children she meets at playgrounds.
"That is my brother Daniel. He cannot talk."
The first time I heard her say that, a pain ripped through my entire body. But just for a moment.
It is the truth. It is reality; it is her reality just like it is mine, just like it is Daniel's.
A few days ago, for the first time, Olivia showed her frustration with autism in words.
Daniel had stolen one of her PB crackers. It had been a long day. And Lord knows she has so many troubling things going on in her life apart from her brother's disability. She was tired. The theft was too much.
"Mama, I want a brother who..."
And she stops herself. And starts again.
"Mama, I want my brother Daniel to LISTEN to me."
"I NEED him to listen to me."
Oh................ Olivia.
What can I say?
What can I possibly say?
So, I said something like this, the whole time reaching for the right words, something to recognize her own pain in all of this while also acknowledging her brother's unfair ride in life, "I know, baby. I want him to listen to you, too. And I want him to listen to me. But it isn't easy for him. I am trying to help him listen better. And we have got to try to help him listen to both of us, even though it is hard."
"Mama, I am ready for Daniel to talk NOW!"
I scoop her into my arms, because, really, what else is there to do???
"I know, baby."
"Me, too."
The Great Big Little Things that Bring Me Joy: Part Fourteen
How many times can I post about my best friend.
But here I go again ....
Thank God, or good fortune, or chance, or whatever brought this woman into my life.
Because when somebody can take your question, your whiny, anxious, needy question, and respond in a way that makes you laugh your head off ....
THAT person is a rare, rare gift.
But here I go again ....
Thank God, or good fortune, or chance, or whatever brought this woman into my life.
Because when somebody can take your question, your whiny, anxious, needy question, and respond in a way that makes you laugh your head off ....
THAT person is a rare, rare gift.
May 4, 2010
The Great Big Little Things that Bring Me Joy: Part Thirteen
Tying bows in the laces of my daughter's tap shoes--even if she does fuss about them being "perfect."
Watching her hug and kiss her best bud when she arrives at dance--it has just been three hours since they last saw each other, but you'd think it had been ages.
Knowing that my daughter, at four-years-old, can march right into her class without a single hesitation. She puts her bag away and finds her spot on the floor. She follows all of the teacher's instructions--well, at least when she isn't lost in a daydream and twirling about the floor. I should say she is capable of following all of the teacher's instructions. She points her toes, shuffles her feet, courtesies, arabesques, all of it.
She sometimes says she wants to be a ballerina when she grows up.
Does prima ballerina potential show up in a four-year-old????
Who knows? And WHO CARES?
I have a child who can do all of that! What a miracle.
What a joy.
Watching her hug and kiss her best bud when she arrives at dance--it has just been three hours since they last saw each other, but you'd think it had been ages.
Knowing that my daughter, at four-years-old, can march right into her class without a single hesitation. She puts her bag away and finds her spot on the floor. She follows all of the teacher's instructions--well, at least when she isn't lost in a daydream and twirling about the floor. I should say she is capable of following all of the teacher's instructions. She points her toes, shuffles her feet, courtesies, arabesques, all of it.
She sometimes says she wants to be a ballerina when she grows up.
Does prima ballerina potential show up in a four-year-old????
Who knows? And WHO CARES?
I have a child who can do all of that! What a miracle.
What a joy.
May 3, 2010
The Great Big Little Things that Bring Me Joy: Part Twelve
I sometimes agonize over how much pain my daughter has had to endure, and will have to endure, during her childhood.
But, wow, does she find ways to crack me up with the little things she says.
Tonight, she paused to watch one of the dancers on DWTS.
She says to me, "Mama, doesn't she look BEAUTIFUL."
Well, yes, Olivia, she does.
"But, she better be careful, or people are going to see her underwear."
THIS coming from a girl who will have entire conversations with guests in our home after getting out of the tub, buck-naked.
The entire conversation.... just standing there, chatting away, without a stitch of clothing on her body.
So, where in the world did this come from, this concern about Cheryl Burke exposing her underwear?
I once heard a cousin of mine, a mother of four children even though none of them really were "planned", say, "God gives you what you need. He just gives you what you need."
Well, I don't know about all of that. There are people, CHILDREN even, with g-tubes and tracheotomies, heart defects and facial deformities, cancer and brain tumors -- and autism -- all over the world. Obviously, they need a whole lot, and no Intervenor-from-Above is supplying the miracle it takes for them to live the strong, healthy, carefree childhoods they deserve.
But, if there is a God above who supplies the things we need to get through the hardships of life, then there is no better example of such a Godsend than my daughter.
Every day, she says something to amaze me.
Every day, she says something to make me laugh.
Every day, I thank the Lord above that she is mine.
But, wow, does she find ways to crack me up with the little things she says.
Tonight, she paused to watch one of the dancers on DWTS.
She says to me, "Mama, doesn't she look BEAUTIFUL."
Well, yes, Olivia, she does.
"But, she better be careful, or people are going to see her underwear."
THIS coming from a girl who will have entire conversations with guests in our home after getting out of the tub, buck-naked.
The entire conversation.... just standing there, chatting away, without a stitch of clothing on her body.
So, where in the world did this come from, this concern about Cheryl Burke exposing her underwear?
I once heard a cousin of mine, a mother of four children even though none of them really were "planned", say, "God gives you what you need. He just gives you what you need."
Well, I don't know about all of that. There are people, CHILDREN even, with g-tubes and tracheotomies, heart defects and facial deformities, cancer and brain tumors -- and autism -- all over the world. Obviously, they need a whole lot, and no Intervenor-from-Above is supplying the miracle it takes for them to live the strong, healthy, carefree childhoods they deserve.
But, if there is a God above who supplies the things we need to get through the hardships of life, then there is no better example of such a Godsend than my daughter.
Every day, she says something to amaze me.
Every day, she says something to make me laugh.
Every day, I thank the Lord above that she is mine.
May 2, 2010
The Great Big Little Things that Bring Me Joy: Part Twelve
Listenting to my daughter sing Old McDonald Had a Farm at the top of her lungs as we enter Wal-Mart.
Putting aside the fact that I can't sing well and joining in--even though we are in public--because she asked me to.
Having a child who can sing a song, any song, and who can ask me to sing with her. How could I ever refuse, no matter where we happen to be?
Putting aside the fact that I can't sing well and joining in--even though we are in public--because she asked me to.
Having a child who can sing a song, any song, and who can ask me to sing with her. How could I ever refuse, no matter where we happen to be?
May 1, 2010
The Great Big Little Things that Bring Me Joy: Part Eleven
Friends who meet me and my children at Six Flags.
Watching my daughter chat and interact with those friends at Six Flags. Watching her just be a little girl with one of her best little buds -- so happy and carefree.
Riding rides with my friend's son -- watching his joy and listening to this amazing boy describe and SHARE his excitement with me -- and knowing what an amazing thing that is for any child on the spectrum.
Riding rides with my son and having him stare deep into my eyes with an expression that tells me exactly how glad he is to be there with me.
Knowing that all of this is still part of my life, even though so much has changed.
Being able to enjoy such a wonderful day with such wonderful people. And being able to laugh at all of the crazy, unexpected things that happen along the way.
Watching my daughter chat and interact with those friends at Six Flags. Watching her just be a little girl with one of her best little buds -- so happy and carefree.
Riding rides with my friend's son -- watching his joy and listening to this amazing boy describe and SHARE his excitement with me -- and knowing what an amazing thing that is for any child on the spectrum.
Riding rides with my son and having him stare deep into my eyes with an expression that tells me exactly how glad he is to be there with me.
Knowing that all of this is still part of my life, even though so much has changed.
Being able to enjoy such a wonderful day with such wonderful people. And being able to laugh at all of the crazy, unexpected things that happen along the way.
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