A Mother's Love Story
raising children with special needs: autism and nonverbal learning disorder
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But I've Always Wanted a Pet Platypus
Like any mom, I'm often amazed at some of the things that come out of the mouths of my children. Here's a few from Bean lately.
Waking up on a Saturday, "I feel like an old man (and she sounded like an old man, too)." "My back hurts." Somewhere along the way, she learned that old men (not women, of course) have aching backs.
Getting off the school bus one afternoon, I asked Bean how her day was. "Rough," she answered. That's it, no explanation. Seriously, how rough could first grade really be?
And my favorite from last night. "Mom, I really want a pet platypus." Anyone who watches the Disney Channel knows that this is a result of Bean's favorite show Phineas and Ferb. I tell her, "I don't think people are allowed to have pet platypuses (yes, mutliple platypus are generally known as platypuses, not platypi)." "Awwwwwww, can you check online tomorrow to see?"
So this morning I've been researching platypuses. Apparently, they are native to Australia and stay in Australia. And you can't keep them as pets in Australia either. And the male platypus has a poisonous venom which thankfully isn't fatal to humans (I'm so relieved to hear this).
So I have to break the news to Bean when she gets home from school. Sorry, no pet platypus. We can't even visit them at the zoo. But I did find some nice stuffed plush platypuses during my online research, so hopefully Bean will settle for a plush platypus. At least she won't have to clean up after it, or worry about it's venom.
Waking up on a Saturday, "I feel like an old man (and she sounded like an old man, too)." "My back hurts." Somewhere along the way, she learned that old men (not women, of course) have aching backs.
Getting off the school bus one afternoon, I asked Bean how her day was. "Rough," she answered. That's it, no explanation. Seriously, how rough could first grade really be?
And my favorite from last night. "Mom, I really want a pet platypus." Anyone who watches the Disney Channel knows that this is a result of Bean's favorite show Phineas and Ferb. I tell her, "I don't think people are allowed to have pet platypuses (yes, mutliple platypus are generally known as platypuses, not platypi)." "Awwwwwww, can you check online tomorrow to see?"
So this morning I've been researching platypuses. Apparently, they are native to Australia and stay in Australia. And you can't keep them as pets in Australia either. And the male platypus has a poisonous venom which thankfully isn't fatal to humans (I'm so relieved to hear this).
So I have to break the news to Bean when she gets home from school. Sorry, no pet platypus. We can't even visit them at the zoo. But I did find some nice stuffed plush platypuses during my online research, so hopefully Bean will settle for a plush platypus. At least she won't have to clean up after it, or worry about it's venom.
Autism Night Before Christmas
With the holidays fast approaching, so much of this rings true.
Autism Night Before Christmas
by Cindy Waeltermann
Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse
We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract
The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head
Did I get the right gift
The right color
And style
Would there be a tantrum
Or even, maybe, a smile?
Our relatives come
But they don't understand
The pleasure he gets
Just from flapping his hands.
"He needs discipline," they say
"Just a well-needed smack,
You must learn to parent..."
And on goes the attack
We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side
We know what it's like
To live with the spectrum
The struggles and triumphs
Achievements, regressions...
But what they don't know
And what they don't see
Is the joy that we feel
Over simplicity
He said "hello"
He ate something green!
He told his first lie!
He did not cause a scene!
He peed on the potty
Who cares if he's ten,
He stopped saying the same thing
Again and again!
Others don't realize
Just how we can cope
How we bravely hang on
At the end of our rope
But what they don't see
Is the joy we can't hide
When our children with autism
Make the tiniest stride
We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,
But what they don't know
Nor sometimes do we
Is that children with autism
Bring simplicity.
We don't get excited
Over expensive things
We jump for joy
With the progress work brings
Children with autism
Try hard every day
That they make us proud
More than words can say.
They work even harder
Than you or I
To achieve something small
To reach a star in the sky
So to those who don't get it
Or can't get a clue
Take a walk in my shoes
And I'll assure you
That even 10 minutes
Into the walk
You'll look at me
With respect, even shock.
You will realize
What it is I go through
And the next time you judge
I can assure you
That you won't say a thing
You'll be quiet and learn,
Like the years that I did
When the tables were turned.......
Autism Night Before Christmas
by Cindy Waeltermann
Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse
We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract
The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head
Did I get the right gift
The right color
And style
Would there be a tantrum
Or even, maybe, a smile?
Our relatives come
But they don't understand
The pleasure he gets
Just from flapping his hands.
"He needs discipline," they say
"Just a well-needed smack,
You must learn to parent..."
And on goes the attack
We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side
We know what it's like
To live with the spectrum
The struggles and triumphs
Achievements, regressions...
But what they don't know
And what they don't see
Is the joy that we feel
Over simplicity
He said "hello"
He ate something green!
He told his first lie!
He did not cause a scene!
He peed on the potty
Who cares if he's ten,
He stopped saying the same thing
Again and again!
Others don't realize
Just how we can cope
How we bravely hang on
At the end of our rope
But what they don't see
Is the joy we can't hide
When our children with autism
Make the tiniest stride
We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,
But what they don't know
Nor sometimes do we
Is that children with autism
Bring simplicity.
We don't get excited
Over expensive things
We jump for joy
With the progress work brings
Children with autism
Try hard every day
That they make us proud
More than words can say.
They work even harder
Than you or I
To achieve something small
To reach a star in the sky
So to those who don't get it
Or can't get a clue
Take a walk in my shoes
And I'll assure you
That even 10 minutes
Into the walk
You'll look at me
With respect, even shock.
You will realize
What it is I go through
And the next time you judge
I can assure you
That you won't say a thing
You'll be quiet and learn,
Like the years that I did
When the tables were turned.......
Dogs, Hair, Teeth, and Stimming
Bean has been pretending to be a dog lately. She watches dog shows (think Clifford), checks dog books out of the library, and has me buying her dog toys (yes, actual toys made for dogs). And at her request (or should I say demand), I bought her Scooby snacks, which are graham crackers shaped like bones. So this morning I asked her if she wanted me to pack her Scooby snacks for her snack at school today. Her reply, "Mom, I'm only a dog at home, not at school." Oh, that explains it.
Bean wants to be bald. She has gorgeous hair that everyone comments on and most girls would love to have. But no, she wants to be bald. Seriously. This is so not going to happen.
And how ingenius is this? Bean is saving her teeth - you know, the baby ones that come out constantly right now. She lost one tooth on her first day of school, and another a few nights ago. So instead of putting them under her pillow to get a dollar or two or five (depending on how generous the tooth fairy is feeling), she is saving them up to get one large lump sum. Not sure how she comes up with these things, but it's actually a very clever idea.
And she still stims by running back and forth for long periods of time. Frankly, it's exhausting to watch. And not sure how it will play out when she is older. But the other night she said it best, "I just love to stim." Hard to imagine for us, but it's very calming for her.
And this morning as we waited outside for the bus, she found a great way to get all her stims out. Usually she'll just run outside, but today she was a bird, flapping her arms and running back and forth. And I had to be a bird, too. Hope none of the neighbors had their video cameras out filming the mommy bird. The things we do for our children.
Middle School
Well, school started exactly a month ago, and so far so good.
This year was a big change for Bud. He's now in 6th grade at the middle school, after 6 years (Kindergarten through 5th) at the same elementary school. And it's going much better than I expected. Sometimes I think I let myself expect the worst so that anything better seems great.
Bud has a wonderful case manager who truly cares about his well being and is really on top of things. And all of his teachers seem genuinely interested in helping Bud succeed. It makes my life so much better since school wants to work WITH me. I've heard so many horror stories about other school districts that more or less want to work against the parents, giving them little input on what's best for their child . I know we are blessed and am so thankful for all the awesome people working at our school district.
Our school has a homework telephone line with each teacher's assignments for the night. So if Bud forgets to write his homework assignments in his book, we can call and find out what he needs to do. Very helpful. I was worried I wouldn't know what was going on at school with Bud having so many different teachers, but it is quite the opposite. And his case manager sends me a weekly email with what is going on in each class and also sends home a points sheet each week on how he's meeting his IEP goals with each class. The communication is superb; and we all know how important communication is.
So of course 6th grade is more work than elementary school. And I do have to sit one-on-one with Bud in order for him to stay focused on his homework. But it's not as overwhelming as I thought it would be.
I know some things will eventually have to change, like Bud not using his locker. His case manager told him he couldn't carry around his backpack with him all day. So you would think he would start using his locker, right? Nope. He solved the backpack dilemna by leaving his backpack in homeroom (where he also has language arts) where he picks it up at the end of the day; everything else is in his binder that he uses for all his classes. He also won't use his gym locker; he brings his gym clothes to school and back home everytime he has gym. So I know Bud will have to eventually learn to use his locker, but moms like me know which battles to fight and when to fight them.
And Bud has managed to take the activity (late) bus home. I could do the easy way out and pick him up from school if he stays after school. But I thought this is one thing I should nip in the bud (haha); he had to ride a bus to the high school and then find a different bus there to take him home and he did it! It may seem like no big deal to most, but for him to do this on his own was an accomplishment.
And almost everyday he tells me what a great mom I am and how glad he is that I am his mom. Cherishing these words, I know that life is good.
This year was a big change for Bud. He's now in 6th grade at the middle school, after 6 years (Kindergarten through 5th) at the same elementary school. And it's going much better than I expected. Sometimes I think I let myself expect the worst so that anything better seems great.
Bud has a wonderful case manager who truly cares about his well being and is really on top of things. And all of his teachers seem genuinely interested in helping Bud succeed. It makes my life so much better since school wants to work WITH me. I've heard so many horror stories about other school districts that more or less want to work against the parents, giving them little input on what's best for their child . I know we are blessed and am so thankful for all the awesome people working at our school district.
Our school has a homework telephone line with each teacher's assignments for the night. So if Bud forgets to write his homework assignments in his book, we can call and find out what he needs to do. Very helpful. I was worried I wouldn't know what was going on at school with Bud having so many different teachers, but it is quite the opposite. And his case manager sends me a weekly email with what is going on in each class and also sends home a points sheet each week on how he's meeting his IEP goals with each class. The communication is superb; and we all know how important communication is.
So of course 6th grade is more work than elementary school. And I do have to sit one-on-one with Bud in order for him to stay focused on his homework. But it's not as overwhelming as I thought it would be.
I know some things will eventually have to change, like Bud not using his locker. His case manager told him he couldn't carry around his backpack with him all day. So you would think he would start using his locker, right? Nope. He solved the backpack dilemna by leaving his backpack in homeroom (where he also has language arts) where he picks it up at the end of the day; everything else is in his binder that he uses for all his classes. He also won't use his gym locker; he brings his gym clothes to school and back home everytime he has gym. So I know Bud will have to eventually learn to use his locker, but moms like me know which battles to fight and when to fight them.
And Bud has managed to take the activity (late) bus home. I could do the easy way out and pick him up from school if he stays after school. But I thought this is one thing I should nip in the bud (haha); he had to ride a bus to the high school and then find a different bus there to take him home and he did it! It may seem like no big deal to most, but for him to do this on his own was an accomplishment.
And almost everyday he tells me what a great mom I am and how glad he is that I am his mom. Cherishing these words, I know that life is good.
Bath funnies
Today is our first day of school; I officially have a middle schooler and a first grader. I am a little (okay, a lot) sad after watching Bud and Bean ride away on their school buses. After 6 years at our elementary school (Kindergarten through 5th), Bud is at a new school. Honestly, middle school scares me. I'm sure Bud will be fine, but middle school is way different than elementary school.
Anyway .......
Bean's hair is thick and curly and down to her butt. I don't think I will ever be able to cut it.
As I was giving Bean her bath last night, I wet her hair to shampoo it. She said, "Mom, you watered my ear. Now my ear is going to grow big like my hair." Silly girl.
Anyway .......
Bean's hair is thick and curly and down to her butt. I don't think I will ever be able to cut it.
As I was giving Bean her bath last night, I wet her hair to shampoo it. She said, "Mom, you watered my ear. Now my ear is going to grow big like my hair." Silly girl.
Blue Rocks Baseball and Variety Philadelphia & Delaware
A few weeks ago we went to a Blue Rocks baseball game. Bean had been wanting to experience a baseball game, but I knew none of the 3 kids would sit through more than a few minutes at most. And even though we have the winning Phillies here, it becomes really expensive when you have to buy 5 tickets, not to mention parking and food.
So when I saw this opportunity through the Delaware Division of Variety (formerly Variety Club), I knew this would be perfect for my family. It's so much easier going somewhere when no one questions your parenting skills or looks at you and your kids with "that look." All the parents there can sympathize if your child will not sit in her seat, talks too loudly and too much, wants to stim, or is having a meltdown.
A nice picnic style dinner was provided that we ate before the game. It was also Tshirt night, so we all got a Blue Rocks Tshirt. And Variety gave our family a goodie "bucket" full of little treats for the kids.
A very nice lady came around with tattoos for the kids. Bean wanted one, and I have to admit I was on the edge of my seat waiting for the meltdown. Bean picked one and the lady was having a hard time peeling the backing off. If part of that tattoo didn't stick to Bean's arm, it could have been disaster. Bean needs things to be "perfect." But alas, the tattoo stuck in whole to Bean's arm and everyone was happy (especially me).
We didn't stay long, but now Bean can put baseball game in her list of experiences. I'm very grateful to Variety for providing this opportunity for our family.
No Thank You
"No thank you," seems to be the answer to everything in my house these days, even if there is no question.
Bean knows she's supposed to be polite and well-mannered in her daily life. That's why she replies, "No thank you," to anything she doesn't want or want to do.
So if I ask her if she wants a banana, she'll reply, "No thank you." Great answer - polite and to the point.
But lately this has also been the reply when there's no question involved.
"Time for bed," I say. "No thank you," Bean replies.
"Time for dinner," I say. "No thank you," Bean replies.
"Please finish your game on the computer," I say. "No thank you," Bean replies.
"I need you to get dressed so we can go to the store," I say. "No thank you," Bean replies.
"Time for your bath," I say. "No thank you," she replies. 2 hours later ....... "Time to get out of the bath, you've been in here a long long time," I find myself turning into a prune just from being in the bathroom for all this time. "No thank you," she replies.
I'll repeat myself and so will she. She'll repeat in a louder and louder voice, "I SAID NO THANK YOU."
I think I'll start using this phrase in my everyday life. If you think about it, how many times a day would you like to just say, "No thank you."? More than once I'm sure.
Bean knows she's supposed to be polite and well-mannered in her daily life. That's why she replies, "No thank you," to anything she doesn't want or want to do.
So if I ask her if she wants a banana, she'll reply, "No thank you." Great answer - polite and to the point.
But lately this has also been the reply when there's no question involved.
"Time for bed," I say. "No thank you," Bean replies.
"Time for dinner," I say. "No thank you," Bean replies.
"Please finish your game on the computer," I say. "No thank you," Bean replies.
"I need you to get dressed so we can go to the store," I say. "No thank you," Bean replies.
"Time for your bath," I say. "No thank you," she replies. 2 hours later ....... "Time to get out of the bath, you've been in here a long long time," I find myself turning into a prune just from being in the bathroom for all this time. "No thank you," she replies.
I'll repeat myself and so will she. She'll repeat in a louder and louder voice, "I SAID NO THANK YOU."
I think I'll start using this phrase in my everyday life. If you think about it, how many times a day would you like to just say, "No thank you."? More than once I'm sure.
Goodbye Kindergarten; Hello First Grade
It's been awhile since I've done an update. The older I get, the faster time flies. In a blink of an eye, my kiddos will be all grown up, so I'm trying to treasure each and every moment. This post will just be about Bean and I'll probably update on Bud next week.
Bean had broke her ankle in May. She actually tripped at school and said, "ouch," but didn't want to stop her day because she had music next, which we all know is her favorite. She never complained other than the occasional "ouch." The next day I took her to the pediatrician, who knew it was broke (on the growth plate), and sent us for X-rays and to the orthopedic doctor. That doctor said for the average person is it an extremely painful injury, but of course not Bean who has this extremely high tolerance of pain. She had a walking (or should I say "stimming or running") cast. She healed and is now as good as new.
Bean did great in Kindergarten. She adapted well, and was going to regular kindergarten (with no aide) for several mornings a week at the end of the school year. She is reading and knows everything (and then some) of what she's "supposed" to know academically, but she remains a perfectionist. She hates taking chances if she's not 100% sure of the answer.
Bean had the absolutely the greatest teacher in the world this year; the most caring and dedicated teacher, with such a beautiful and unselfish heart and soul, who knows how to reach our "special children." I'm truly going to miss "Mrs. M." It may be hard for future teachers to measure up, but I will try my best to go easy on them.
Bean qualified for extended school year, so the school district will pay for her to go to a social skills class; it meets once a week for 1 1/2 hours for 8 weeks starting the week after July 4th. I know this will be really good for her. And she's working on a summer packet that her teacher sent home. She LOVES school, and will probably have the summer packet done by the middle of July; she does several days work everyday.
Next year she will be in the primary development class, and mainstreamed in as much as possible in a regular first grade class. Hopefully by the end of first grade, she will totally be mainstreamed. And she will still get ST and OT in first grade.
It's really hard to believe that this is the same little girl who started kindergarten in diapers. She is really growing up fast. Too fast.
Build-A-Bear
Yesterday I took Bean and Bud to Build-A-Bear. Bean has been thinking about having a birthday party and inviting her classmates and busmates. But, she doesn't know "which one to pick," as she says; I usually limit her choices to two, and more often than not don't give her a choice; otherwise life would be on permanent pause. She's been to a birthday party at someone's house, a party at a indoor playground/ball place, and she knows Chuck-E-Cheese, and now Build-A-Bear.
I'm edging her on to BAB, so since she's never been, yesterday I took her and Bud to BAB. Bud heard we were going, and when I asked him if he wanted to go he quickly got ready. He was secretly excited since he has never been to BAB either.
When we got there, Bud said, "This is just like taxidermy. Look at all the animal skins." Beautiful.
To keep costs down, I had 2 $5 coupons and got the kids to pick their animals from the less expensive half. If you've never been to BAB, there are A LOT of animals to choose from. Of course Bean said, "I don't know which one to pick." Imagine that. But we were in luck because there was one blue bear, and blue is absolutely her favorite color. Bud quickly picked a Koala Bear.
They took their bears to be stuffed and picked a heart for them. Rubbed it on their forehead so their bear could be smart, their ears so it could hear, and etc. with their eyes, mouth, nose, heart, and tummy. They put the heart in their bear and the man sewed their bears up.
Bears went for an air bath and they both picked out outfits for the bears. Bud wanted a white trench coat of sorts, so he got a karate outfit with sunglasses. Bean who loves colors picked the rainbow dress and a birthday hat for her boy bear. "He's still a boy," she said.
Bud named his bear Near and Bean named her bear KJJ. Yep.
On the car ride home, Bean asked if she could search for treasure in her bear when she got home. You see, she had seen all the fluff and the heart go into her bear, and thought she could just dive right in there and retrieve the treasure.
It was an extraordinary day with taxidermy and treasure-hunting and beautiful rainbow dresses on a "boy" bear. This is such a special blessing God has given me - seeing the world through the eyes of my children.
I'm edging her on to BAB, so since she's never been, yesterday I took her and Bud to BAB. Bud heard we were going, and when I asked him if he wanted to go he quickly got ready. He was secretly excited since he has never been to BAB either.
When we got there, Bud said, "This is just like taxidermy. Look at all the animal skins." Beautiful.
To keep costs down, I had 2 $5 coupons and got the kids to pick their animals from the less expensive half. If you've never been to BAB, there are A LOT of animals to choose from. Of course Bean said, "I don't know which one to pick." Imagine that. But we were in luck because there was one blue bear, and blue is absolutely her favorite color. Bud quickly picked a Koala Bear.
They took their bears to be stuffed and picked a heart for them. Rubbed it on their forehead so their bear could be smart, their ears so it could hear, and etc. with their eyes, mouth, nose, heart, and tummy. They put the heart in their bear and the man sewed their bears up.
Bears went for an air bath and they both picked out outfits for the bears. Bud wanted a white trench coat of sorts, so he got a karate outfit with sunglasses. Bean who loves colors picked the rainbow dress and a birthday hat for her boy bear. "He's still a boy," she said.
Bud named his bear Near and Bean named her bear KJJ. Yep.
On the car ride home, Bean asked if she could search for treasure in her bear when she got home. You see, she had seen all the fluff and the heart go into her bear, and thought she could just dive right in there and retrieve the treasure.
It was an extraordinary day with taxidermy and treasure-hunting and beautiful rainbow dresses on a "boy" bear. This is such a special blessing God has given me - seeing the world through the eyes of my children.
PSSAs aka Pennsylvania's standardized testing
It seems like there is always some sort of standardized testing at school. The school does MAP (Measures of Academic Progress) testing every fall and spring to "chart" each child's progress. And the state does PSSA testing in math and reading, and in some grades writing and science. That's a lot of standardized testing for someone like Bud, who has a non-verbal learning disorder.
Anyway, Bud's IEP allows for special accommodations in testing. He can go to a different room so he isn't distracted as easily and can ask questions about the directions if he needs to. He can get up and walk around if he needs a break. And he can have extra time if he needs it to complete the test.
Bud usually does okay on these tests (often better than okay), considering the circumstances. But I was really proud yesterday when I got the results of his science PSSA that he took in the spring of 4th grade. Bud got advanced in his PSSA for science. Bud is very capable of being advanced in most things, but truly does not test well. Usually the black and white picture of my child's capabilities is very gray. So you can see why when a standardized test says Bud is advanced, it makes for a very proud mommy moment. I know he's more than capable of being advanced, but there it is in black and white.
Anyway, Bud's IEP allows for special accommodations in testing. He can go to a different room so he isn't distracted as easily and can ask questions about the directions if he needs to. He can get up and walk around if he needs a break. And he can have extra time if he needs it to complete the test.
Bud usually does okay on these tests (often better than okay), considering the circumstances. But I was really proud yesterday when I got the results of his science PSSA that he took in the spring of 4th grade. Bud got advanced in his PSSA for science. Bud is very capable of being advanced in most things, but truly does not test well. Usually the black and white picture of my child's capabilities is very gray. So you can see why when a standardized test says Bud is advanced, it makes for a very proud mommy moment. I know he's more than capable of being advanced, but there it is in black and white.