Our son was just 19 months old when he was vaccination injured. It was shortly before our son was injured that a young angel blessed our lives; we call her Miss Rachel at our house. Back then my husband would often leave before our kids were awake in the morning and return after they had long been in bed. I’m not going to lie to you….I was overwhelmed and literally suffering from exhaustion due to insomnia. I felt like I needed to learn and research everything I could find and I lost a lot of sleep worrying about what the future would hold for my boy. Thankfully Miss Rachel arrived on the scene to give us all a break!!
It is scary when you have a Special Needs child who isn’t verbal when it’s time to go out for the evening and leave them with a babysitter. After our son became affected it took time before we left him with a babysitter. Autism tears families apart and our family promised each other to fight with all we had to not become part of the Autism divorce statistics. My husband changed jobs and began working from home which gave him more flexibility to spend time with his family. Things were falling into place so you can imagine how desperately we needed somebody like Miss Rachel in our lives!!
Rachel had great references and was CPR certified & had aced the babysitter course. We knew her mom who had been Megan’s mommy & me teacher so we were confident leaving the kids with her. We had our Occupational Therapist train her to do sensory diet types of things with our son. It’s always nerve wracking to leave your kids with anybody new. We put our faith in Rachel and went out on a date. Rachel was wonderful!! We had a wonderful dinner out & Megan had her hair braided and both kids were in bed asleep. Yay! It’s so nerve wracking when you have a Nonverbal Special Needs child because what if they can’t identify their needs, get sick or are afraid or just want mommy. Certainly our typical child can tell us what happens while we’re gone but sometimes you may need to leave just the Special Needs child with a sitter. “Miss Rachel” instantly had a connection with both of our kids and it was almost as though she understood our son’s cues & babbles as well as we did. He would instantly go right over to her when she arrived and rarely gave us a hard time about leaving.
Miss Rachel is a life saver! We’ve grown closer and more attached to her as each year has passed. We have enlisted her to help our family in our charity work which she did enthusiastically. She’s been there for family events, she’s helped wrap our Christmas gifts, and she’s helped us move and watched our beautiful children grow. We’ve had the pleasure of witnessing what a wonderful young woman she’s become as she learned to drive, taken her first job and graduated high school. We had hoped she would still be our sitter when she came home on breaks from college. We had visions of family vacations accompanied by Miss Rachel while home on break.
Alas, she applied for a job and she will now be calling Uncle Sam her employer. It’s with heavy hearts that our family will usher our “Miss Rachel” off to Naval Boot Camp this coming week. We certainly hope Uncle Sam understands what a wonderful, dedicated, caring new employee they’ve just gotten. Uncle Sam’s gain is certainly our family’s loss. Our Miss Rachel will always be a member of our family and we hope that if our favorite “sailor” is ever in a port nearby that she’ll be sure to visit often. Thank you Miss Rachel for loving our kids and helping us keep them safe & entertained. Thank you for taking the time to understand each of our kids’ “specialness” and embracing it. We love you like our own, Miss Rachel!!
Wednesday, September 29, 2010
Wednesday, June 23, 2010
The Blessings of being the sibling of a Special Needs Child
This topic is close to my heart today as my beautiful, daughter basks in the glory of just having won an award at her annual dance recital. She is a devoted sister to our Autistic son just 18 months her junior. She does her best to be patient as we do our best to meet our son’s needs. Yet only being 6 years old; the jealousy beast does still have times when it rears its ugly head. Dance is her special time that’s just for her. We do our best to ensure her brother doesn’t come to class which then makes it all about Megan time with Mommy.
She has really started to come out of her shell and it has become obvious as she smiles ear to ear the whole time she dances her Tap & Ballet dance numbers. Her brother enjoys seeing her come onto the stage and often calls out to her because he recognizes her. It has taken some practice but he now is able to sit or at least remain in the same general area for the majority of the recital which is in itself an accomplishment.
Megan’s dance school is run by a young woman who has a great deal in common with my daughter as she has already walked a mile in my daughter’s street & dance shoes. “Miss Amy” is the sister of a Special Needs brother and knows my daughter’s heart. She knows the heartbreak of having other kids not say nice things about her sibling, being disappointed when the best laid plans don’t work out and sometimes just wanting some special time for herself. She knows the love of a brother and the lessons it teaches you. It has taught both “Miss Amy” and our daughter compassion, acceptance, generosity of spirit and patience. It is therefore fitting then that Megan win the “Little Miss Amy” award for being a Leader (translation-bossy LOL) & being a lot like “Miss Amy”.
Sadly, Miss Amy’s brother passed away but is still honored each year by her charity fundraising dance recital. Our family gladly participates with “Miss Amy” because it is also our hope that through our example Megan will also honor her brother via charity work. It is also our hope that Megan will discover a love of life that she can express through dance or music, or sports or anything that makes her feel accomplished as “Miss Amy” has and translates it into a lifetime of joy.
Having a Special Needs sibling has made “Miss Amy” into a role model of compassion, patience and acceptance who makes each child in her life feel welcomed, cherished and loved as they pass through the studio doors. She is their role model, inspiration and strict but loving educator. The children flock to her when she enters a room and she helps to mold them into inspirational souls as we parents entrust our young charges to her each week. My daughter also is blessed to have an Autistic brother who has already taught her so much and still has so much more to teach her.
Congratulations to my beautiful, dancing Princess Megan on her “first dance award” and here’s to hoping she will continue to be cheered on by her loving brother for many years & numerous awards to come!
She has really started to come out of her shell and it has become obvious as she smiles ear to ear the whole time she dances her Tap & Ballet dance numbers. Her brother enjoys seeing her come onto the stage and often calls out to her because he recognizes her. It has taken some practice but he now is able to sit or at least remain in the same general area for the majority of the recital which is in itself an accomplishment.
Megan’s dance school is run by a young woman who has a great deal in common with my daughter as she has already walked a mile in my daughter’s street & dance shoes. “Miss Amy” is the sister of a Special Needs brother and knows my daughter’s heart. She knows the heartbreak of having other kids not say nice things about her sibling, being disappointed when the best laid plans don’t work out and sometimes just wanting some special time for herself. She knows the love of a brother and the lessons it teaches you. It has taught both “Miss Amy” and our daughter compassion, acceptance, generosity of spirit and patience. It is therefore fitting then that Megan win the “Little Miss Amy” award for being a Leader (translation-bossy LOL) & being a lot like “Miss Amy”.
Sadly, Miss Amy’s brother passed away but is still honored each year by her charity fundraising dance recital. Our family gladly participates with “Miss Amy” because it is also our hope that through our example Megan will also honor her brother via charity work. It is also our hope that Megan will discover a love of life that she can express through dance or music, or sports or anything that makes her feel accomplished as “Miss Amy” has and translates it into a lifetime of joy.
Having a Special Needs sibling has made “Miss Amy” into a role model of compassion, patience and acceptance who makes each child in her life feel welcomed, cherished and loved as they pass through the studio doors. She is their role model, inspiration and strict but loving educator. The children flock to her when she enters a room and she helps to mold them into inspirational souls as we parents entrust our young charges to her each week. My daughter also is blessed to have an Autistic brother who has already taught her so much and still has so much more to teach her.
Congratulations to my beautiful, dancing Princess Megan on her “first dance award” and here’s to hoping she will continue to be cheered on by her loving brother for many years & numerous awards to come!
Monday, June 7, 2010
"Surviving extra time off during the summer”
Summer brings to mind so many fond memories of wonderful days on the water for me as a child. The days of swimming, riding bikes, fishing, being on the boat & playing outside all day are some of my most cherished memories. Even those wonderful rainy days curled up with a good book were wonderful. As kids my siblings and I were subjected to “child abuse” LOL or so we thought at the time because my dad would discontinue the cable television!! I know a travesty right? The good news is we all survived and perhaps are even more interesting and certainly well read individuals.
All of those happy memories made me want to also give my kids a little piece of that. Our son spends a great deal of his summer vacation time in extended school year so we try and capitalize on our time together. My husband and I both love the water (ocean, lake, river—we’re not picky!) and wanted to instill that in our son and daughter. Having an Autistic son sometimes makes some of the events a challenge but he’s quickly learning to enjoy them as much as his sister does which increases my husband’s, my daughter’s & my enjoyment of it all too. It plucks at my heart strings to see my son excitedly running down the beach after his sister flying a kite or trying so hard to help build a sand castle.
If you’re going stir crazy and need to get out of the house:
Find air conditioned gym places (Bounce U, Twisters, Little Gym) for open play time
*** A bouncy kid is a happy kid at our house.
Check out aquariums, museums, area parks, historic sites and conservation tour areas.
*** They have great touch & feel museums, children’s displays or walking tours if you check their sites.
Search for area charities (Surfer’s Healing, Heart of Sailing, Variety Children’s Charity, Sea Paddle of NYC, etc.) who host events for Autistic Children and their families. ***Many are free or reduced rate events.
http://www.bestdayfoundation.org/ http://heartofsailing.org/default.asp
http://www.seapaddlenyc.org/ http://www.surfershealing.org/index.html
http://www.varietychildrenscharity.org/ http://www.poac.net/
Our state is rich with historic lighthouses and some of the country’s most beautiful beaches right at our back door. We’re also within driving distance of Boston, Baltimore, Philadelphia, NYC, the Thousand Islands, Poconos Mountains, Adirondack Mountains and even some provinces of Canada.
If you’re looking for ideas to do closer to home then you could do all sorts of stuff! Picnic in your own backyard, camp out at Grandma’s house, spend a rainy day at the local library, have a neighborhood block party or snuggle around a “camp fire” in your backyard and roast marshmallows. Try out a Yoga class for Special Needs kids, book a therapeutic horseback riding lesson, look for seashells and sea glass on the beach, fly a kite.
Many of my childhood, summer memories are of the simplest things. They are all about my being with my Parents, Grandparents, siblings, cousins, Aunts and Uncles. The love, innocence and pure joy of just having time to play and be a kid is what I hope to instill in both my children.
All of those happy memories made me want to also give my kids a little piece of that. Our son spends a great deal of his summer vacation time in extended school year so we try and capitalize on our time together. My husband and I both love the water (ocean, lake, river—we’re not picky!) and wanted to instill that in our son and daughter. Having an Autistic son sometimes makes some of the events a challenge but he’s quickly learning to enjoy them as much as his sister does which increases my husband’s, my daughter’s & my enjoyment of it all too. It plucks at my heart strings to see my son excitedly running down the beach after his sister flying a kite or trying so hard to help build a sand castle.
If you’re going stir crazy and need to get out of the house:
Find air conditioned gym places (Bounce U, Twisters, Little Gym) for open play time
*** A bouncy kid is a happy kid at our house.
Check out aquariums, museums, area parks, historic sites and conservation tour areas.
*** They have great touch & feel museums, children’s displays or walking tours if you check their sites.
Search for area charities (Surfer’s Healing, Heart of Sailing, Variety Children’s Charity, Sea Paddle of NYC, etc.) who host events for Autistic Children and their families. ***Many are free or reduced rate events.
http://www.bestdayfoundation.org/ http://heartofsailing.org/default.asp
http://www.seapaddlenyc.org/ http://www.surfershealing.org/index.html
http://www.varietychildrenscharity.org/ http://www.poac.net/
Our state is rich with historic lighthouses and some of the country’s most beautiful beaches right at our back door. We’re also within driving distance of Boston, Baltimore, Philadelphia, NYC, the Thousand Islands, Poconos Mountains, Adirondack Mountains and even some provinces of Canada.
If you’re looking for ideas to do closer to home then you could do all sorts of stuff! Picnic in your own backyard, camp out at Grandma’s house, spend a rainy day at the local library, have a neighborhood block party or snuggle around a “camp fire” in your backyard and roast marshmallows. Try out a Yoga class for Special Needs kids, book a therapeutic horseback riding lesson, look for seashells and sea glass on the beach, fly a kite.
Many of my childhood, summer memories are of the simplest things. They are all about my being with my Parents, Grandparents, siblings, cousins, Aunts and Uncles. The love, innocence and pure joy of just having time to play and be a kid is what I hope to instill in both my children.
Friday, February 26, 2010
Riding the bus...........
Remember riding the bus as a kid? An education could be had on
the bus in my hometown....especially because my parents tried
hard to shelter us. All of the bad words were learned on the bus
(well and while helping your dad do home improvement projects)
and even some of the birds and the bees stuff too.
the bus in my hometown....especially because my parents tried
hard to shelter us. All of the bad words were learned on the bus
(well and while helping your dad do home improvement projects)
and even some of the birds and the bees stuff too.
Well trying to get my kids to school on the bus this year has felt
like a three ring circus. My husband goes away every year for a
big work conference so that doesn't help in the confusion. The
first day our son was all dressed, done eating his breakfast and
waiting excitedly to go off to school. Well if you know anything
about Autistic kids then you know they don't wait very well.
He grew impatient and I grew nervous they would once again
forget to pick him up for school. They have forgotten him on
the first day for summer school 2 years in a row and for regular
school too already so who wouldn't be nervous right?
like a three ring circus. My husband goes away every year for a
big work conference so that doesn't help in the confusion. The
first day our son was all dressed, done eating his breakfast and
waiting excitedly to go off to school. Well if you know anything
about Autistic kids then you know they don't wait very well.
He grew impatient and I grew nervous they would once again
forget to pick him up for school. They have forgotten him on
the first day for summer school 2 years in a row and for regular
school too already so who wouldn't be nervous right?
Happily we headed out to the bus when we saw it pull up only
to have the bus turn around and drive away w/out him!!! Ummm
excuse me I called jogging towards the street. They just kept
driving and didn't come back. When I called Transportation over
and over to no avail only getting a busy signal; I called school and
had them transfer me. They said another bus would come but
we waited and waited (again not good at the waiting) nobody
came. I drove him to school where he proceeded to try and yank
all of my hair out and kick my teeth down my throat all at the
same time. OKAY NOT A GOOD TRANSITION!!!!
to have the bus turn around and drive away w/out him!!! Ummm
excuse me I called jogging towards the street. They just kept
driving and didn't come back. When I called Transportation over
and over to no avail only getting a busy signal; I called school and
had them transfer me. They said another bus would come but
we waited and waited (again not good at the waiting) nobody
came. I drove him to school where he proceeded to try and yank
all of my hair out and kick my teeth down my throat all at the
same time. OKAY NOT A GOOD TRANSITION!!!!
Then it was time for the Sassy Kindergarten Princess to ride her
bus. It's a shame the Transportation people didn't send us any
bus info until the week after school started. I had to drive her on
the first day and she was disappointed. She has wanted to ride
the school bus since the first day it came to pick up her little
brother!!! When I got to school they knew her bus assignment
and I said okay good please make sure she rides the bus home.
Then I worried what if she doesn't end up on the bus, what
if I'm not on time at the bus stop. The mother worry kicked
in but it all worked out and she arrived safely....over an hour
after getting out of school but none the less arrived safely.
That first week of bus riding was memorable to say the least.
My daughter had another Kindergartener tell her to "shut up
B*tch" !!!! Excuse me??? I tend to not get excited about little
stuff so when she came off the bus and tattled that a boy said a
bad word on the bus I said "ahhh just don't listen because you
know it's not okay to talk like that". Well she must have been
especially upset about it (understandably so) because she
came back to me and brought it up again. This was when she
told me the boy said it to her!!! Well mommy mode kicked in
and I was kicking some butt and taking some names before
I even knew what hit me!! The Director of Transportation,
Principal and bus driver had all been advised of the situation.
All I can say is we're glad to have that bus route safely behind
us now that we've moved!!
Please become a follower of my exciting new decorating blog too.
It's called Illuminate, decorate and fascinate. It can also be found here on Blogger.com
Wednesday, September 16, 2009
Funny thing about swear words.........
The funny thing about swear words is that you're even happy
to hear "the bad ones" as my daughter calls them simply because
it's language when your child is Autistic. One friend tells of
going to school for her son's conference at school only to hear
her son likes to drop "the F bomb". Sadly, we were all excited
to hear it because he was talking!!!!
Will's bad word of choice has befuddled us because it's not one
of the words we use in our house. Now we're wondering where
his new love of the DAMN word has come from recently. He's
even using it appropriately. He dropped something down the
stairs & said oh damn. LOL
My son can't say his full name yet but he swears & we're thrilled.
I know my mom must be so proud right? When I was growing up
even the word FART was a swear word in our house and now they
have a whole series of kids books all about Walter the Farting Dog.
LOL You should have seen Nanny's face the first time she heard
Walter rip one on the Tag Reader!!!
to hear "the bad ones" as my daughter calls them simply because
it's language when your child is Autistic. One friend tells of
going to school for her son's conference at school only to hear
her son likes to drop "the F bomb". Sadly, we were all excited
to hear it because he was talking!!!!
Will's bad word of choice has befuddled us because it's not one
of the words we use in our house. Now we're wondering where
his new love of the DAMN word has come from recently. He's
even using it appropriately. He dropped something down the
stairs & said oh damn. LOL
My son can't say his full name yet but he swears & we're thrilled.
I know my mom must be so proud right? When I was growing up
even the word FART was a swear word in our house and now they
have a whole series of kids books all about Walter the Farting Dog.
LOL You should have seen Nanny's face the first time she heard
Walter rip one on the Tag Reader!!!
Don't Beat Yourself Up..........
I got an email today from a young mom whose child was only
recently diagnosed with a Spectrum disorder. Then I received a
call from a veteran mom whose child has been diagnosed for 7+
years now. What amazed me the most about the two of them
was how similar their feelings were to each other's and mine too.
My favorite thing to say to other moms as they struggle with
the Autism monster is "do what you need to do to get through
the day".
It's not always easy & trust me when I tell you I'm not Suzie
Sunshine by any means. LOL Yes, I struggle with the worry that
everyone stares at Will or thinks he's different. Sometimes I wish
Will could be like the other kids & listen when I tell him not to
run in front of the swings at the playground instead of me having
grass stains from diving on him to keep him from getting hit. I
even wish at times like getting a family portrait done that it was
as simple as say cheese. You do mourn the what if's alot when
they're first diagnosed and then over time when it seems like
their peers are so much farther ahead. Megan is only 18 months
older so I always know what Will could be doing.
What hurts me the most though is when my Nephew who just
turned 4 is doing stuff that's closer to what Meg is doing than Will.
Sometimes I can't help myself & I cry when my mom tells
me something cute he's said or done. Not because I don't want
him to be doing those things but because I know what has been
stolen from us too.
I waste alot of days feeling sorry for myself but try not to wallow
in the pity. Some days it's easier than others. Then I look into my
son's sweet face and I'm reminded how much I adore this kid.
Flapping, hitting, kicking, biting, pushing, pulling my hair and all
of it he does and has done in public but I know deep down that's
not my beautiful boy.....it's the illness. He almost yanked huge
clumps of my hair out the first day of school when I had to drive
him to school after the bus left w/out even stopping. I have my
days that I've cried in public because he's been so bad and been
hurting me physically in a dr's office waiting room while others
watched in horror. Well watch all you want because I waited
6 months to get into this dr's office and I'm not leaving no matter
how badly my son acts or how undignified you think I look. Yes,
that's right I'm simply doing what I can to get through that day.
I have my days that I have to stop and take a really big, deep
breath as he's pinching me so often I look like a battered woman.
Some days I even have to stop and take 3 or 4 deep breaths just
to get through the first hour after he gets off the bus. You will have
those days when you feel like it would be nice just to run away, get
some drinks, take a bubble bath and order room service. They
won't ever hold a candle to those days when your child looks at
you and says I love you mommy.
People will judge you and maybe even try to make you feel badly
about how your child acts or how behind the other kids. I've had
other moms who were blessed w/only "typical" kids tell me what I'm
doing wrong and then there are the moms who have walked in my
shoes that just give me a look that says I understand. Or the dad
who sees that I'm alone and struggling when Scott used to work
all the time & he'd help me get our stuff to the car or catch
Will as he tried to run away.
I'm thankful for all of those people coming into my life because they
all just as William does have a lesson to teach me. Just remember
Autism moms and dads, God has Faith in you and your ability to parent
these Autistic kids (his "special" angels) just the way they need to be
parented. He also understands if you struggle with things not always
being peachy- keen. A true friend and compassionate person would
never ever judge you for saying just that either. You will lose friends
over the course of this illness and then you'll also meet some terrific,
inspiring, uplifting people who you'll wonder what good things you
ever did to deserve their friendship. I can promise you that. :)
Keep your chins up and just keep breathing! Keep your spirits up
and remember this isn't a sprint it's a relay and sometimes you just
have to hand off the baton in order to be able to recharge for the next leg.
recently diagnosed with a Spectrum disorder. Then I received a
call from a veteran mom whose child has been diagnosed for 7+
years now. What amazed me the most about the two of them
was how similar their feelings were to each other's and mine too.
My favorite thing to say to other moms as they struggle with
the Autism monster is "do what you need to do to get through
the day".
It's not always easy & trust me when I tell you I'm not Suzie
Sunshine by any means. LOL Yes, I struggle with the worry that
everyone stares at Will or thinks he's different. Sometimes I wish
Will could be like the other kids & listen when I tell him not to
run in front of the swings at the playground instead of me having
grass stains from diving on him to keep him from getting hit. I
even wish at times like getting a family portrait done that it was
as simple as say cheese. You do mourn the what if's alot when
they're first diagnosed and then over time when it seems like
their peers are so much farther ahead. Megan is only 18 months
older so I always know what Will could be doing.
What hurts me the most though is when my Nephew who just
turned 4 is doing stuff that's closer to what Meg is doing than Will.
Sometimes I can't help myself & I cry when my mom tells
me something cute he's said or done. Not because I don't want
him to be doing those things but because I know what has been
stolen from us too.
I waste alot of days feeling sorry for myself but try not to wallow
in the pity. Some days it's easier than others. Then I look into my
son's sweet face and I'm reminded how much I adore this kid.
Flapping, hitting, kicking, biting, pushing, pulling my hair and all
of it he does and has done in public but I know deep down that's
not my beautiful boy.....it's the illness. He almost yanked huge
clumps of my hair out the first day of school when I had to drive
him to school after the bus left w/out even stopping. I have my
days that I've cried in public because he's been so bad and been
hurting me physically in a dr's office waiting room while others
watched in horror. Well watch all you want because I waited
6 months to get into this dr's office and I'm not leaving no matter
how badly my son acts or how undignified you think I look. Yes,
that's right I'm simply doing what I can to get through that day.
I have my days that I have to stop and take a really big, deep
breath as he's pinching me so often I look like a battered woman.
Some days I even have to stop and take 3 or 4 deep breaths just
to get through the first hour after he gets off the bus. You will have
those days when you feel like it would be nice just to run away, get
some drinks, take a bubble bath and order room service. They
won't ever hold a candle to those days when your child looks at
you and says I love you mommy.
People will judge you and maybe even try to make you feel badly
about how your child acts or how behind the other kids. I've had
other moms who were blessed w/only "typical" kids tell me what I'm
doing wrong and then there are the moms who have walked in my
shoes that just give me a look that says I understand. Or the dad
who sees that I'm alone and struggling when Scott used to work
all the time & he'd help me get our stuff to the car or catch
Will as he tried to run away.
I'm thankful for all of those people coming into my life because they
all just as William does have a lesson to teach me. Just remember
Autism moms and dads, God has Faith in you and your ability to parent
these Autistic kids (his "special" angels) just the way they need to be
parented. He also understands if you struggle with things not always
being peachy- keen. A true friend and compassionate person would
never ever judge you for saying just that either. You will lose friends
over the course of this illness and then you'll also meet some terrific,
inspiring, uplifting people who you'll wonder what good things you
ever did to deserve their friendship. I can promise you that. :)
Keep your chins up and just keep breathing! Keep your spirits up
and remember this isn't a sprint it's a relay and sometimes you just
have to hand off the baton in order to be able to recharge for the next leg.
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