Showing posts with label faith. Show all posts
Showing posts with label faith. Show all posts
Monday, January 21, 2013
Faith Is...
Today is Martin Luther King Day and the 2nd inauguration of our President. It's a day of inspiration, hope and faith. It's a day to reflect and to look ahead.
I'm not a religious person. But that's not to say I do not have faith. There have been times in these last few years, I've had to rely on faith alone. It's the thing that's kept me going - especially in my darkest moments.
Yesterday The Boy turned seven. Birthdays are always bittersweet. While we celebrate another year, it's also a reminder. And with every year, the gap between typical and atypical grows wider.
Every year, it's a little harder to see the whole staircase.
And I have to remember how far The Boy's come. I think of the milestones that keep me going on the days when I think I can't take another step.
I think of that Spring day almost five years ago when I first heard the words: your son has autism. At the time The Boy had no language, he couldn't point or clap or give me kiss. The staircase was impossible to see.
And then slowly, The Boy started to make progress and it became easier to take steps - even though I still couldn't see the whole staircase. I had faith.
I continue to have faith.
I don't know what the future holds for The Boy. I don't know even what the future holds for me. But I do know that The Boy will make progress. That while the gap between typical and atypical may not fully close, The Boy will continue to flourish. His language will continue to develop. He will become independent enough to manage his day to day needs. He will continue to teach me, surprise me and inspire me.
I don't need to see the whole staircase to know that. I don't even need to see a single step. I will continue to walk with The Boy hand in hand up the (at times, invisible) staircase until he is ready to take his first steps on his own.
Monday, January 9, 2012
the LITTLE things are a BIG deal (#2)
Post #2 for the LITTLE things are a BIG deal meme. It's easy to link up and share your story. [copy/paste the button (above) in your post or sidebar. Refer to my blog in your post & link to my current "the LITTLE things are a BIG deal" post. Link your post with Linky Tools.] For information click HERE. You do not have to be a special needs parent to link up. AutismWonderland is a community. And I want to celebrate your every day wonderful moments with you.
*
I don't get much sleep. The Boy wakes up most nights and either plays or decides he wants to sleep in our bed.
We have a queen size bed. The Boy will be six in a few weeks. He's a big kid and takes up a lot of space in our bed. Even on the nights when The Husband falls asleep on the sofa (xbox controllers in hand), The Boy takes up most of the bed. And I often wake up cramped in a corner only to look over and see The Boy - arms and legs sprawled.
I know, I know, I should put him back to his own bed when he wakes in the middle of the night. But it's pointless arguing with a child who wants to be up when you want to sleep. And when I try to get him to go back to his room we spend the night going back and forth between beds. No one wins. So why fight? So I go against my own rule: never let your baby/child sleep in your bed.
Thing is? When The Boy was a baby he never slept in our bed. Ever. We put him to sleep in his crib from the first night we brought him home from the hospital. He was good sleeper. Until he turned two years old. We haven't really slept through the night since.
In the beginning I did try putting him back to his bed. No words, no eye contact, just marching him back into his room. But we'd spend hours going back and forth. After a few weeks, I waved the white flag.
If (sort of) getting a good nights sleep meant having The Boy sleep in our bed, then so be it.
I've been hoping The Boy would eventually grow out of it.
Very early Saturday morning, The Boy came into our bed. He lay across the foot of the bed. But he's getting tall enough that his feet are starting to dangle. He wedged his way between me and The Husband. The Boy had a hard time, spreading out and getting comfortable. This went on for almost twenty minutes.
And then The Boy got up. I heard him kind of sigh with annoyance. And stomped into his room.
It was about 5 am and I thought he would play in his room. But The Boy was too quiet. And that's never really a good thing, unless I know for sure he's sleeping. So I had no choice but to get up and see what he was up too.
The Boy was asleep in his own bed.
Was this the turning point? Would The Boy now realize our bed wasn't big enough for three? I kissed his forehead and whispered 'good job' for putting himself back to sleep.
And then last night/very early in the morning around 1 am, The Boy came crawling into our bed. And he tossed and turned trying to get comfortable. Once again, he stomped out of our room.
I listened, wanting to make sure he went back into his room. This time he headed into the kitchen. I walked out and when I saw him, I cleared my throat. I gave him The Look. The Boy turned around, marched back to his room and into his bed.
I knew that I had to lay with him so that he could fall asleep. And he did.
I woke up again at 3 am. I hate sleeping in The Boy's bed. It's not very comfortable. If I had known at the time of purchase, I would be spending so much time in his bed, I would have splurged and gotten one of those memory foam mattresses. Anyway...I realized The Boy was gone.
Where was he?
Back in our bed.
Oh well, The Boy is getting it (sort of).
That's what matters.
I know, I know, I should put him back to his own bed when he wakes in the middle of the night. But it's pointless arguing with a child who wants to be up when you want to sleep. And when I try to get him to go back to his room we spend the night going back and forth between beds. No one wins. So why fight? So I go against my own rule: never let your baby/child sleep in your bed.
Thing is? When The Boy was a baby he never slept in our bed. Ever. We put him to sleep in his crib from the first night we brought him home from the hospital. He was good sleeper. Until he turned two years old. We haven't really slept through the night since.
In the beginning I did try putting him back to his bed. No words, no eye contact, just marching him back into his room. But we'd spend hours going back and forth. After a few weeks, I waved the white flag.
If (sort of) getting a good nights sleep meant having The Boy sleep in our bed, then so be it.
I've been hoping The Boy would eventually grow out of it.
Very early Saturday morning, The Boy came into our bed. He lay across the foot of the bed. But he's getting tall enough that his feet are starting to dangle. He wedged his way between me and The Husband. The Boy had a hard time, spreading out and getting comfortable. This went on for almost twenty minutes.
And then The Boy got up. I heard him kind of sigh with annoyance. And stomped into his room.
It was about 5 am and I thought he would play in his room. But The Boy was too quiet. And that's never really a good thing, unless I know for sure he's sleeping. So I had no choice but to get up and see what he was up too.
The Boy was asleep in his own bed.
Was this the turning point? Would The Boy now realize our bed wasn't big enough for three? I kissed his forehead and whispered 'good job' for putting himself back to sleep.
And then last night/very early in the morning around 1 am, The Boy came crawling into our bed. And he tossed and turned trying to get comfortable. Once again, he stomped out of our room.
I listened, wanting to make sure he went back into his room. This time he headed into the kitchen. I walked out and when I saw him, I cleared my throat. I gave him The Look. The Boy turned around, marched back to his room and into his bed.
I knew that I had to lay with him so that he could fall asleep. And he did.
I woke up again at 3 am. I hate sleeping in The Boy's bed. It's not very comfortable. If I had known at the time of purchase, I would be spending so much time in his bed, I would have splurged and gotten one of those memory foam mattresses. Anyway...I realized The Boy was gone.
Where was he?
Back in our bed.
Oh well, The Boy is getting it (sort of).
That's what matters.
Monday, January 2, 2012
the LITTLE things are a BIG deal [#1]
I wanted to kick off my first blog post of 2012 with something special: my very own blog meme. For more information click HERE. Please note, you do not have to be a special needs parent to link up. AutismWonderland is a community. And I want to celebrate your every day wonderful moments with you.
*
The Boy runs to me, iPad clutched in both hands. He is smiling. It's a dimpled smile, baby teeth showing. And his eyes are bright and blinking rapidly with excitement. I know he's done something that he wants to show me.
But still I remind him to walk. And then I bring him back to where he started from, asking him to walk to me. I know he wants to run. But he walks, one foot in front of the other, across the room to where I am. The way he is walking, I can tell he's telling himself to walk, walk, walk; walk, walk, walk. The Boy is still smiling. Looking down at the iPad and then back at me. His arms and shoulders are wiggly.
"Look Mommy." He shoves the iPad in my face, almost too close for me to see. It's just a blur of colors. And I have to hold it out.
The Boy stands in front of me. Still smiling. Body still twitching and wiggling. He's waiting for me to say it.
"Wow! This is great! Good Job." I hold up my hand, and The Boy slaps me five.
What's the big deal about this picture? Not only did The Boy color within the lines but he was proud to show me that he did a good job.
The Boy has been doing a lot of coloring and drawing lately. He wants to do it. He will sit still and focus and really concentrate to stay in the lines. Some days are harder than others. But he's getting so much better. Every day, with every he gets so much better.
And there was a time, not so long ago, when The Boy couldn't hold a crayon at all. And I had to sit with him, my hand over his. He used to cry and switch hands. Because he lacked the hand strength to hold a crayon or pencil for more than a few minutes. And when he learned to hold the crayon, he was looking everywhere else except the piece of paper.
Handwriting and coloring is still difficult for The Boy. We still struggle through our homework. But his interest is improving. He asks to color and write and erase. He wants to cut out pictures he's colored and loves to show off his work. And he feels good when I praise him. And when he feels good, I feel good.
But the best thing and biggest deal about this picture is that it shows how hard he tries.
Monday, November 28, 2011
#YouMightBeAnAutismParentIf
you've been on twitter lately and following these tweets - #youmightbeanautismparentif.
If you haven't - you should. It's been steadily growing. The idea for the twitter party was started by Many Hats Mommy and the hashtag was created by @RaisingASDKids.
Honestly up until a few days ago I wasn't one for twitter. I didn't really get it, couldn't keep up - I didn't really understand the point of the hashtag. But since I've been participating in the #youmightbeanautismparentif twitter party, I've been a tweet freak. I think I've come out of the Twitter closet and now ready to embrace @LaliQuin (my twitter name).
I'm throwing out hashtags and retweeting and replying to tweets. (Ok, still working on my response time.)
And when @HollyRod4kids retweeted ME. I yelled out - OMG! Because that's the kind of Twitter dork I am.
If you haven't - you should. It's been steadily growing. The idea for the twitter party was started by Many Hats Mommy and the hashtag was created by @RaisingASDKids.
Honestly up until a few days ago I wasn't one for twitter. I didn't really get it, couldn't keep up - I didn't really understand the point of the hashtag. But since I've been participating in the #youmightbeanautismparentif twitter party, I've been a tweet freak. I think I've come out of the Twitter closet and now ready to embrace @LaliQuin (my twitter name).
I'm throwing out hashtags and retweeting and replying to tweets. (Ok, still working on my response time.)
And when @HollyRod4kids retweeted ME. I yelled out - OMG! Because that's the kind of Twitter dork I am.
The absolute best part of this ongoing twitter party is that I've connected with so many people, I may not have met otherwise. I'm laughing and crying and nodding my head because the things other parents are writing I totally get. Because it's always nice to know I'm not alone in my thoughts.
Here are just a few of my favorites:
@diaryofamom #youmightbeanautismparentif you find yourself celebrating and heartbroken - at the same time and for the exact same reason.
@jillsmo #youmightbeanautismparentif you have to live forever. No, I'm serious. This isn't optional.
@autismfather #youmightbeanautismparentif one moment, you feel completely alone & the next, you're a part of a large, passionate & supportive community.
@loumelgarejo #youmightbeanautismparentif You see a child breaking down in public and don't pass judgment on the child... or the parents.
@LLA_Princess #youmightbeanautismparentif you always talk like you are in a social story....."And that's ok"
@Birdakamaude #youmightbeanautismparentif you've read enough books on #autism that you could practically be a doctor yourself
@trydefyinggrav #YouMightBeAnAutismParentIf you wanted to write your own #Parenting book because the ones you have are useless in your world.
@jodigomes #youmightbeanautismparentif youve accepted that NORMAL in ur house is exactly opposite of "typical" in pediatricians office #Autism
@RaisingASDKids #youmightbeanautismparentif once child knows no Santa u watch him so he doesn't tell every small child bc "they need to know the truth too"
@manyhatsmommyMI And the companion guilt: #Youmightbeanautismparentif you feel guilty that your child says "I love you" when so many others don't. #autism
@thecoffeeklatch If you want to follow the most inspirational thread on Twitter - get a kleenex and be inspired #youmightbeanautismparentif #TCK.
And here are a few of mine -
LaliQuin AutismWonderland
#youmightbeanautismparentif you look at pictures pre-diagnosis and wonder "Why didn't I see it?" #guilt
#YouMightBeAnAutismParentif you have a hard time going to sleep at a reasonable hour. #neverlearn #needmoresleep
#youmightbeanautismparentif you've slipped on, stepped on, rolled over on (yes, in bed) Legos #OUCH
#youmightbeanautismparentif YOU know in the grand scheme of things #autism isn't a big deal, but hate when others say, "it's no big deal"
#youmightbeanautismparentif potty training is taking years not weeks. And let's not discuss night-time potty training...
#youmightbeanautismparentif Goals are the priority
And here are a few of mine -
Go ahead join the #YouMightBeAnAutismParentIf conversation on twitter!
#youmightbeanautismparentif _____________________.
#youmightbeanautismparentif _____________________.
Tuesday, November 22, 2011
The Moment I Forgot About Autism
It happened in Target of all places, on a Sunday afternoon. The husband had wandered off while I pushed The Boy around in the cart; though at four years old, The Boy was well over the weight limit. It was easier to shop, if he was contained.
Through the corner of my eye, I saw a woman. Unlike my frantic sloppy ponytail and my smear of cherry chapstick, the woman had time to fix herself before facing the world. Her hair was neatly combed back in a ponytail; she wore bright coral lipstick, boot cut jeans and brown boots with kitten heels. Her nails were filed square and painted ivory. My nails were bare and bitten down.
I realized she was a mother. She had one manicured hand on the handle of the shopping cart. Her son lagged behind. Every so often, her son wandered off. When the mother called out a name, her son instantly reappeared. Her boy was probably a year older than mine.
I could never shop like that. High heels were impractical when out with The Boy. I never knew when I needed to run. And there was no letting go of his hand. If I let go, he’d wander away; the warmth of my hand would go unnoticed. If I called out his name, he would ignore me, stuck in stim. If he ran off, The Boy would never tell a stranger his name. Not because he didn’t know it or couldn’t say it, the question just needed to be asked several times before The Boy provided a response; if he provided a response. And it was unlikely that The Boy would look a stranger in the eye. A stranger would give up. And The Boy lacked the cognitive ability to say that he needed me or missed me. The Boy was a kidnapper’s dream. No, I could never let go.
I wondered what that mother’s life was like; I wondered about the dynamic of her relationship with her son. I was certain that she never had a team of therapists in and out of her house. When she asked her child a question, he looked her in the eye and answered back. And when she kissed that child goodnight, he would automatically say the three words every mother longs to hear, without any prompting and with genuine feeling. When she let go of his hand, she knew he would return.
Her boy wanted to start writing his Christmas list. He wanted a new scooter and some video games. The mother smiled and she said something that I did not hear. I stopped listening. It was hard to listen to their exchange and not feel envious.
We approached the baby section and The Boy attempted to stand, reaching out for the infant toys, his hands flapped with both excitement and frustration, bird-like sounds coming from his mouth. “Sit down. Use your words.” I said in a firm tone of voice used by therapists.
The Boy had words, lots of words actually – hundreds, maybe thousands. But he used them sparingly and hardly spontaneously. Most of his speech was scripted, memorized from books or cartoons.
“Mommy. I want the toys please,” he asked.
The Boy’s words were stilted, his high-pitched voice void of emotion. With each syllable his head bobbed like a marionette.
“Fix it.” I said.
The Boy repeated the request in his natural voice. Though his tone was deeper, it still lacked affect. Words can be taught, emotional tone is much harder.
We moved slowly through the aisles. The store was crowed with holiday shoppers; the toy shelves were filled to capacity, not an item of out of stock. Women walked with circulars in their hands, looking for sales; searching for price check machines.
The glitter and sparkle of the Christmas decorations reminded me that I needed to buy a tree and pull the decorations from storage.
“Oh my! Look at all these decorations,” The Boy said in his high-pitched voice. His words were crisp and clear. His facial expression was appropriate: happy and wide-eyed. He pointed. And I was surprised that he knew the word “decorations.”
I pushed the cart closer to the decorations. There were Christmas trees and wreaths, stockings and snowmen, candy canes and bright bulbs. I didn’t care if he flapped; he was excited.
“What are the decorations for?” I asked.
The Boy looked me right in the eye. “For Christmas! C is for Christmas.”
The Boy kicked his legs against the cart. He smiled the smile that I loved; it belonged to a four year old boy who was neither typical nor atypical; with dimples in each cheek, his eyes squinted and his nose scrunched up.
I laughed. “That’s right! Who comes on Christmas?”
“Santa Claus!”
“And what does Santa Claus bring?”
“Presents!”
I praised The Boy again and again. Gave him a hug and kissed his cheeks. I must have looked like an idiot, making such a big deal over such a little thing.
It was the first real conversation we ever had. In that moment I forgot The Boy had autism. I forgot about the mother in her kitten heels and her son with his Christmas list and my seconds of envy. I forgot that a doctor once said, The Boy might never utter a word. I forgot about all the hours of speech therapy that were needed to get to that simple conversation.
I was just a mother and he was just a little boy, excited about Christmas. And maybe letting go of his hand was not so far away.
~~~~~~~~~
This essay was written November 2010 but was never posted.
Monday, November 21, 2011
Making Peace with Autism
There are moments in our life that define us; moments that can make us better or make us bitter.
An autism diagnosis is one of those moments. It's not only a life altering moment for a child, but for the parent. The moment a parent hears: Your child has autism. Your world will change. And you can either let the diagnosis destroy you or you can make peace with it.
My suggestion? Make peace with autism. Because it's going to be around for a while. Might as well get to know it.
A while ago I read a comment by a special needs parent. And it was basically criticizing parents of special needs kids. It went something like: Parents who say autism makes them a better person are full of it.
Ultimately, it's not about becoming a better parent, I think it's about adopting a different parental attitude.
Raising a child with autism is hard. It's probably the hardest thing I've ever done. There are days when I'm tired of dealing with it. And when I say "it," I don't mean autism itself - I mean everything else that comes along with autism.
The therapies. The non-stop appointments. The evaluations. The meetings. Fighting for services. Securing appropriate school placement.
The staying up late, reading through Special Education laws, tweaking IEPs or just unable to sleep worrying about the future.
Making peace with autism, doesn't come immediately. It's a process. And some days are better than others. There are times when I cry and I feel helpless. Because it is hard when you don't have the means to do all that you can.
Nothing would be easier than sitting back and throwing myself a pity party. But who the hell wants to go to that?
It would be too easy for me to write about all the things The Boy cannot do. But what would be the point?
Quite honestly, it makes me sad to focus on those things. There are so many things, I would love to see The Boy do. So many things that would make me jump up and down with silly happiness. But I have to remind myself, the things that may make me happy - probably don't matter to The Boy.
The Boy is happy. Just as he is. Doing what he does. And that's what I choose to focus on. The things that make him happy. And all the things he can do. Because there is so much he can do. I have a lot to be proud of. And I have so much to be thankful for. That's what I want to concentrate on.
Autism has made me better because its forced me to have a different attitude. It's given me a new perspective on happiness. It's taught me to appreciate the day to day moments - like a smile, a wave or a spontaneous word. No accomplishment is taken for granted. Ever.
And during those moments, when I cry and feel defeated by the Department of Education all I need to do is look at The Boy. He gives me the strength to keep going. He is my proof that I am doing the right thing.
For those that know me personally, you know I can be a bit of cynic. I see the glass half empty on many things.
But when it comes to The Boy, his progress and our life - I refuse to have that mindset. I can't and I won't. Because if I can't believe in him...who will?
And I believe that anything is possible for The Boy.
Inspired by Many Hats Mommy 'Share Your Strength'
An autism diagnosis is one of those moments. It's not only a life altering moment for a child, but for the parent. The moment a parent hears: Your child has autism. Your world will change. And you can either let the diagnosis destroy you or you can make peace with it.
My suggestion? Make peace with autism. Because it's going to be around for a while. Might as well get to know it.
A while ago I read a comment by a special needs parent. And it was basically criticizing parents of special needs kids. It went something like: Parents who say autism makes them a better person are full of it.
Ultimately, it's not about becoming a better parent, I think it's about adopting a different parental attitude.
Raising a child with autism is hard. It's probably the hardest thing I've ever done. There are days when I'm tired of dealing with it. And when I say "it," I don't mean autism itself - I mean everything else that comes along with autism.
The therapies. The non-stop appointments. The evaluations. The meetings. Fighting for services. Securing appropriate school placement.
The staying up late, reading through Special Education laws, tweaking IEPs or just unable to sleep worrying about the future.
Making peace with autism, doesn't come immediately. It's a process. And some days are better than others. There are times when I cry and I feel helpless. Because it is hard when you don't have the means to do all that you can.
Nothing would be easier than sitting back and throwing myself a pity party. But who the hell wants to go to that?
It would be too easy for me to write about all the things The Boy cannot do. But what would be the point?
Quite honestly, it makes me sad to focus on those things. There are so many things, I would love to see The Boy do. So many things that would make me jump up and down with silly happiness. But I have to remind myself, the things that may make me happy - probably don't matter to The Boy.
The Boy is happy. Just as he is. Doing what he does. And that's what I choose to focus on. The things that make him happy. And all the things he can do. Because there is so much he can do. I have a lot to be proud of. And I have so much to be thankful for. That's what I want to concentrate on.
Autism has made me better because its forced me to have a different attitude. It's given me a new perspective on happiness. It's taught me to appreciate the day to day moments - like a smile, a wave or a spontaneous word. No accomplishment is taken for granted. Ever.
And during those moments, when I cry and feel defeated by the Department of Education all I need to do is look at The Boy. He gives me the strength to keep going. He is my proof that I am doing the right thing.
For those that know me personally, you know I can be a bit of cynic. I see the glass half empty on many things.
But when it comes to The Boy, his progress and our life - I refuse to have that mindset. I can't and I won't. Because if I can't believe in him...who will?
And I believe that anything is possible for The Boy.
Inspired by Many Hats Mommy 'Share Your Strength'
Labels:
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Motivational Monday,
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Monday, November 7, 2011
When all else fails, I say a little prayer.
Last night after The Boy fell asleep, I sat on the sofa with The Husband and started to cry. "It shouldn't have to be this hard."
And The Husband, put his hand over mine. "It'll be okay, babe."
Because that's what he says when he's run out of words of consolation.
It's been a rough couple of weeks.
I am not a religious person. I don't go to church or really believe in God even though I was raised Catholic, taught Sunday School (while in high school) and worked at a Rectory. I'm pretty much an Agnostic, borderline Atheist. But this isn't about God or Jesus. It's about faith. It's about the power words can provide when you are searching for serenity.
That is where I am today, because I've been saying this prayer all morning (well...skipping the last 5 or 6 lines because like I said, I am not a believer).
I can't force people to do the right thing when it comes to The Boy.
I know I am doing the right thing. I know I am doing all that I can for him.
Now I will just need to have faith.
And The Husband, put his hand over mine. "It'll be okay, babe."
Because that's what he says when he's run out of words of consolation.
It's been a rough couple of weeks.
I am not a religious person. I don't go to church or really believe in God even though I was raised Catholic, taught Sunday School (while in high school) and worked at a Rectory. I'm pretty much an Agnostic, borderline Atheist. But this isn't about God or Jesus. It's about faith. It's about the power words can provide when you are searching for serenity.
That is where I am today, because I've been saying this prayer all morning (well...skipping the last 5 or 6 lines because like I said, I am not a believer).
I can't force people to do the right thing when it comes to The Boy.
I know I am doing the right thing. I know I am doing all that I can for him.
Now I will just need to have faith.
What gets you through the hard times?
Thursday, October 13, 2011
Walking Up The Down Escalator
| Summer 2011 |
Last night while doing homework with The Boy, I watched as he struggled coloring within the lines. Writing his name. Tracing the letters. His hand shook as he gripped the crayon. The crayon that I broke in half to help with his grip. (note to self: DO NOT break crayons in front of The Boy. It leads to 5 minutes of "We have to fix it. We need scotch tape.") The Boy needed a bit of redirection and every so often I needed to put my hand over his.
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| Fall 2011 |
I stare at the scrawl of his six letter name and I'm glad he doesn't have to write out his last. As much as The Boy loves spelling and letters and building words with his blocks - writing is an exhausting task. It's not laziness, it's hard. Physically and mentally exhausting. It requires hand strength he doesn't quite have. Motor planning and concentration.
For me it requires a lot of redirection. And even more patience.
For me it requires a lot of redirection. And even more patience.
Why does The Boy have difficulty concentrating to write his own name, but has the patience to spell out If you give a moose a muffin? It's a question, I know he cannot answer. At least not now.
There was a time when The Boy couldn't point his finger.
There was a time when The Boy couldn't jump.
There was a time when The Boy couldn't speak.
The Boy does all of these things now. So I have to remind myself not to worry too much about his handwriting or the coloring within the lines.
When I got off the D train at Columbus Circle this morning, I glanced over at the escalators.
The up escalator was too crowded, The down escalator, empty. I was almost tempted to run up the down escalator, instead I ran up the subway steps.
I don't know why, but at that moment I thought of The Boy and his learning process. Some children can just get by as easily as standing on the escalator. Others, have to work at it by running up the stairs. Learning for The Boy, is like walking up the down escalator. It's difficult, there are moments when you feel like you're just never moving forward. Getting to the top will take much longer, but it can be done.
The Boy never stops moving. Eventually he'll make it to the top. And every day he's one step closer to getting there.
Labels:
autism,
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Wednesday, October 12, 2011
This Too Shall Pass
Monday, September 26, 2011
It's My One Year Blogoversary!
Okay, okay it's really tomorrow. But I'm excited. And I'm proud of the things I've accomplished in this last year.
I started AutismWonderland as an assignment for a critical practice graduate course: Writing as a Cultural Act. We were encouraged to lauch our own platforms for getting our work to readers.
And when I started this blog last year, I had no idea people would actually read it. I mean, other than the other students assigned to the class and the professor, David Groff. As the only mother of a child with autism in the class, my blog was pretty much ignored by my peers. Writing about life with a kid on the spectrum just isn't sexy or cutting edge to hipster writers. (Who knew?)
It was rough in the beginning (heck it still is). Writing. Rewriting. Posting. Then waiting for comments. Blog writers love comments, the way an actor needs applause.
Quite honestly, I'm a little surprised that I've kept it up.
Then toward the end of the semester, David invited Betsy Lerner to speak. Betsy Lerner is a literary agent, an author, a poet and blog writer. She is also hilarious! (If you're an aspiring writer - you have to read her book, Forest for the Trees.)
Anyway at the end of her talk, David introduced me to Betsy. And I was telling her about my blog, my point of view and what I wanted to be when I grew up. She gave me some advice and then she said, "You may have heard of one of my clients, Temple Grandin." Yes - the Temple Grandin! At this point, I may have gushed a little bit. No need to go into those details...
But my biggest takeaway from hearing Betsy speak was her suggestion on blog writing. She stressed consistency and commitment, you have to do it every day, for at least a year.
And that's what I've been doing.
Writing this blog has been liberating, motivating, inspiring and so much cheaper than therapy. I've recieved so many words of encouragement, advice and comfort. I've connected with so many other blog writers and parents and special education teachers. I love hearing from parents of older kids. Parents who leave comments like, "The Boy reminds me of my son when he was that age." And then they tell me about their son and all the amazing progress they've made. It's rewarding, when a parent emails me to ask for advice, to share their experience or to thank me for something I've written or shared. I feel like my writing has a purpose, it's not just some indulgence.
I remember when The Boy was first diagnosed, I really had no one to talk to about what I was feeling. It was as if The Husband and I were alone, stranded in this world with no one to point us in the right direction. And I know many parents feel that way, when they hear the words "your child has autism" for the very first time.
I think it's one of the reasons why I continue to write this blog. Because I want to share what works for us and I want to hear what works for you. I love that I've created this network of parents, writers and educators. It's made our journey a little less lonely.
So...thank you :)
I started AutismWonderland as an assignment for a critical practice graduate course: Writing as a Cultural Act. We were encouraged to lauch our own platforms for getting our work to readers.
And when I started this blog last year, I had no idea people would actually read it. I mean, other than the other students assigned to the class and the professor, David Groff. As the only mother of a child with autism in the class, my blog was pretty much ignored by my peers. Writing about life with a kid on the spectrum just isn't sexy or cutting edge to hipster writers. (Who knew?)
It was rough in the beginning (heck it still is). Writing. Rewriting. Posting. Then waiting for comments. Blog writers love comments, the way an actor needs applause.
Quite honestly, I'm a little surprised that I've kept it up.
Then toward the end of the semester, David invited Betsy Lerner to speak. Betsy Lerner is a literary agent, an author, a poet and blog writer. She is also hilarious! (If you're an aspiring writer - you have to read her book, Forest for the Trees.)
Anyway at the end of her talk, David introduced me to Betsy. And I was telling her about my blog, my point of view and what I wanted to be when I grew up. She gave me some advice and then she said, "You may have heard of one of my clients, Temple Grandin." Yes - the Temple Grandin! At this point, I may have gushed a little bit. No need to go into those details...
But my biggest takeaway from hearing Betsy speak was her suggestion on blog writing. She stressed consistency and commitment, you have to do it every day, for at least a year.
And that's what I've been doing.
Writing this blog has been liberating, motivating, inspiring and so much cheaper than therapy. I've recieved so many words of encouragement, advice and comfort. I've connected with so many other blog writers and parents and special education teachers. I love hearing from parents of older kids. Parents who leave comments like, "The Boy reminds me of my son when he was that age." And then they tell me about their son and all the amazing progress they've made. It's rewarding, when a parent emails me to ask for advice, to share their experience or to thank me for something I've written or shared. I feel like my writing has a purpose, it's not just some indulgence.
I remember when The Boy was first diagnosed, I really had no one to talk to about what I was feeling. It was as if The Husband and I were alone, stranded in this world with no one to point us in the right direction. And I know many parents feel that way, when they hear the words "your child has autism" for the very first time.
I think it's one of the reasons why I continue to write this blog. Because I want to share what works for us and I want to hear what works for you. I love that I've created this network of parents, writers and educators. It's made our journey a little less lonely.
So...thank you :)
Tuesday, September 20, 2011
Post it Note Tuesday: Notes from the Notebook

Yesterday I came home after a long day of work. I was hesitant in picking up The Boy's communication notebook, afraid of reading what the teacher had to write about The Boy's day. While I was hoping The Boy had a good day, I honestly wasn't expecting it.
Shame on me.
As I read the note from The Boy's teacher, I couldn't help but tear up a little.
This morning, I wrote back to the teacher.
I think this is a major turning point for all of us. I hope the teacher goes with it. Somehow, I have a feeling she will.
Thursday, September 15, 2011
Building a Dream School
I've been thinking about this for while. Especially once the Turning 5 process began and all the schools I was considering were in the City, Westchester, Queens, Brooklyn, Long Island.
Aside from the District 75 schools and the ASD Horizon/Nest programs, there is not a single school dedicated to children with autism in The Bronx.
Let me be more specific. There is not a single school dedicated in The Bronx for children with autism like The Boy.
The Boy is somewhere in the middle. And so many children fall into that category. Bright kids. Sensory seeking kids. Kids who don't how to make a friend. Or carry on a conversation.
What I discovered last year while touring, applying and talking to directors of these special needs programs is that while they accept the autism classification, they do not accept children with behaviors.
Think about that for a second. A child with autism. With no behaviors.
After being rejected from so many schools, I had a candid conversation with the director of my dream school. She pretty much said, if The Boy didn't have any of his behaviors, if he didn't need the constant redirection - he would have been accepted.
Last night I recieved a call from my friend Gen. She also happens to be The Boy's former ABA therapist. (She is also pursuing BCBA certification.) She knows everything we've gone through in the last year. And she said, "It's great that you write your blog, but we need to really do something."
Gen wants us to start a school in The Bronx for kids like The Boy.
The Boy needs a school where they follow a combination of ABA and TEACCH. The Boy needs a school with a sensory room, with an OT who is on staff not contracted. The Boy needs a school with speech pathologists and Behaviorists and Special Education teachers and assistants who have a true understanding of autism. The Boy needs a nurturing environment. The Boy needs a school with sensory friendly classrooms. The Boy needs a school that involves the entire family.
Does this sound like the kind of school your child needs?
Well...Let's create one. WE need to "be the change that [we] wish to see in the world."
Yeah, I know this seems like a pretty lofty idea. But every dream starts somewhere.
If you live in The Bronx, if you're a parent of a child like The Boy, if you're a service provider, teacher, therapist and social worker and are interested in our "Building a Dream School" project, email me at autismwonderland@gmail.com
*This post was inspired by many events that have happened over the course of the year and by a Kick in the Blog.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
At first, dreams seem impossible, then improbable, and eventually inevitable.
~ Christopher Reeve
Any dream worth dreaming, is worth the effort to make it some true.~ Evan Gourley
Never give up on a dream just because of the time it will take to accomplish it.
The time will pass anyway.
~ Unknown
Aside from the District 75 schools and the ASD Horizon/Nest programs, there is not a single school dedicated to children with autism in The Bronx.
Let me be more specific. There is not a single school dedicated in The Bronx for children with autism like The Boy.
The Boy is somewhere in the middle. And so many children fall into that category. Bright kids. Sensory seeking kids. Kids who don't how to make a friend. Or carry on a conversation.
What I discovered last year while touring, applying and talking to directors of these special needs programs is that while they accept the autism classification, they do not accept children with behaviors.
Think about that for a second. A child with autism. With no behaviors.
After being rejected from so many schools, I had a candid conversation with the director of my dream school. She pretty much said, if The Boy didn't have any of his behaviors, if he didn't need the constant redirection - he would have been accepted.
Last night I recieved a call from my friend Gen. She also happens to be The Boy's former ABA therapist. (She is also pursuing BCBA certification.) She knows everything we've gone through in the last year. And she said, "It's great that you write your blog, but we need to really do something."
Gen wants us to start a school in The Bronx for kids like The Boy.
The Boy needs a school where they follow a combination of ABA and TEACCH. The Boy needs a school with a sensory room, with an OT who is on staff not contracted. The Boy needs a school with speech pathologists and Behaviorists and Special Education teachers and assistants who have a true understanding of autism. The Boy needs a nurturing environment. The Boy needs a school with sensory friendly classrooms. The Boy needs a school that involves the entire family.
Does this sound like the kind of school your child needs?
Well...Let's create one. WE need to "be the change that [we] wish to see in the world."
Yeah, I know this seems like a pretty lofty idea. But every dream starts somewhere.
If you live in The Bronx, if you're a parent of a child like The Boy, if you're a service provider, teacher, therapist and social worker and are interested in our "Building a Dream School" project, email me at autismwonderland@gmail.com
*This post was inspired by many events that have happened over the course of the year and by a Kick in the Blog.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
At first, dreams seem impossible, then improbable, and eventually inevitable.
~ Christopher Reeve
Any dream worth dreaming, is worth the effort to make it some true.~ Evan Gourley
Never give up on a dream just because of the time it will take to accomplish it.
The time will pass anyway.
~ Unknown
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