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!
Showing posts with label Jersey Shore. Show all posts
Showing posts with label Jersey Shore. Show all posts
Wednesday, June 23, 2010
Monday, June 15, 2009
Moms need support too........
I've been talking with alot of moms of Autistic kids lately because I was planning a little bridal shower for my son's teacher & I've been out in my community doing some more advocacy work lately too. We all agree this battle isn't easy but we're all so incredibly blessed to have these beautiful children in our lives that we aren't going to stop fighting. Our angels need us!!!
I try really hard to stay positive & move forward with our fight & my son's journey back from Autism. I like to hear other people's stories and learn what they each have to teach me. I've always been a people person and I believe this will be one of my single most helpful traits in this battle against Autism. I'm far from shy & I have a great capacity for empathy so this is why I think people feel comfortable sharing their plights with me. I also let the other moms know that I understand what they're feeling, thinking, living, fearing and as a result it all just comes pouring out. It is okay to hurt and mourn the "what could have beens" or fear the "what will bes" for our kids. Please don't let anyone tell you differently!!! There will be days that you just need to cry it out so that other days you can bolster yourself back up again and get back on the front lines fighting for our kids.
We all need a safe place to fall like Dr. Phil says and too many other parents who have not and will not walk a mile in our shoes are so judgemental. Lately, its been upsetting to hear that some of the local "moms groups" have actually asked the moms of Autistic kids not to participate in their activities. WHAT??????? Its a moms' group started by moms for moms .....but they're turning away moms? How is that possible in this day & age? How could people be that closed minded that they would turn a child who has a disease that is helped through socialization with typical peers? Its not contagious!!!!!!!!! It is also not right. It is times like these that I wish I could go right over to the homes of the people in charge of groups like and have them look me in the eye & tell me my child isn't welcome. Then I remember God puts people like that in our way so we can build up our own personal resolve & vow to not give up the fight.
Are there really parents that would perpetuate this kind of ignorance amongst other children in this day & age? Instead why not use an interaction with an Autistic child as a lesson in tolerance, acceptance & patience. In closing I would simply like to say that my door is always open and I won't turn your child away even if they do come to my home with ignorant ideas and attempt to exclude my child from their "typical" play. I can't guarantee that I won't have changed their minds by the time they leave my home and have taught them a bit more tolerance than they learned at home. I can tell you this though.........the day won't EVER come that my child would turn their back on your child no matter how different or lacking in compassion they might be. Children are our futures and the future holds a huge Autism population each of whom will need a friend.
I try really hard to stay positive & move forward with our fight & my son's journey back from Autism. I like to hear other people's stories and learn what they each have to teach me. I've always been a people person and I believe this will be one of my single most helpful traits in this battle against Autism. I'm far from shy & I have a great capacity for empathy so this is why I think people feel comfortable sharing their plights with me. I also let the other moms know that I understand what they're feeling, thinking, living, fearing and as a result it all just comes pouring out. It is okay to hurt and mourn the "what could have beens" or fear the "what will bes" for our kids. Please don't let anyone tell you differently!!! There will be days that you just need to cry it out so that other days you can bolster yourself back up again and get back on the front lines fighting for our kids.
We all need a safe place to fall like Dr. Phil says and too many other parents who have not and will not walk a mile in our shoes are so judgemental. Lately, its been upsetting to hear that some of the local "moms groups" have actually asked the moms of Autistic kids not to participate in their activities. WHAT??????? Its a moms' group started by moms for moms .....but they're turning away moms? How is that possible in this day & age? How could people be that closed minded that they would turn a child who has a disease that is helped through socialization with typical peers? Its not contagious!!!!!!!!! It is also not right. It is times like these that I wish I could go right over to the homes of the people in charge of groups like and have them look me in the eye & tell me my child isn't welcome. Then I remember God puts people like that in our way so we can build up our own personal resolve & vow to not give up the fight.
Are there really parents that would perpetuate this kind of ignorance amongst other children in this day & age? Instead why not use an interaction with an Autistic child as a lesson in tolerance, acceptance & patience. In closing I would simply like to say that my door is always open and I won't turn your child away even if they do come to my home with ignorant ideas and attempt to exclude my child from their "typical" play. I can't guarantee that I won't have changed their minds by the time they leave my home and have taught them a bit more tolerance than they learned at home. I can tell you this though.........the day won't EVER come that my child would turn their back on your child no matter how different or lacking in compassion they might be. Children are our futures and the future holds a huge Autism population each of whom will need a friend.
Wednesday, April 22, 2009
Why isn't there a welcome to Autism Packet?
Hi and Welcome to Autism! When my son was diagnosed with
Regressive Autism; I really felt as though there should have
been somebody like Julie McCoy from the Love Boat to usher
us into this new community & let us know what activities we
had scheduled. Developmental Intervention party of 2, ABA
party of 5 your tables are ready!!! Little did I know what I
really had ahead of me when the insensitive evaluator said as
her parting comment, "well at least now he'll qualify for the
Handicapped Preschool".
Initially, I felt like I wanted to run out into our quiet street
and yell that's the best you've got for me? You're the "expert"
and that's all you have to offer. Thankfully since that day our
family of 4 has been sent numerous angels to help us through
our journey on this crazy cruise. I won't lie to you either some
days it feels more like we're on that fateful 3 hour tour from
Gilligan's Island fame.
My precious Angel's name is Will. Will is going to be 4 this May
and has been diagnosed for almost two years now. William
arrived on Cinco De Mayo with great expectations from his
sister who turned 18 months old that same day. He was a
chubby faced, snuggly baby whose blond hair shone like a halo
as he camped at my breast. He weighed 10 pounds, measured
22" long and had 2 teeth. Yes, teeth!!! Our family was complete
and now my husband and I were living the American
Dream. Or so we thought until one cold day in December
of 2006!!!
Will hit his milestones and was developing normally according
to all the scales & the books. He was a loving, social, happy boy
and each time he smiled up into our faces we knew we were
blessed. When he was 18 months old he got sick for the first time
ever with an ear infection. It took two rounds of antibiotics to
clear it up. When we went back to the Pediatrician they said lets
get him caught up on some of his shots since his ear is all clear. I
had been going slow with vaccinations for both kids since learning
of other kids who were vaccination injured. I had told them I didn't
want an MMR until he was 3. It was on his chart in RED!!!!!!!!!
Megan (our daughter) was running through the office & I was
trying to catch her while the nurse & Pediatrician gave William an
MMR shot because they had it in stock. At first, I was angry that
they gave him the shot while I was chasing Megan around the
office. Then I was furious!!!!!!!!!!!!
I remember hearing his cry from out in the waiting room & knowing
in my gut that it wasn't the same kind of distress cry. Moms need
to listen to their instincts and not let other people make them feel
silly for it. He screamed & cried all the way home and on and off
for hours that whole night. When I called the Pediatrician she told
me he needed some Tylenol and would be fine. The next day this
other child was in William's place and that child lost all of his words
he'd already learned. I'll never forget that day or the sinking feeling
in the pit of my stomach when I lifted my angel out of his bed. The
realization that my angel was gone slowly sunk in as he didn't turn
to us with his chubby cheeked smile when we said his name or how
he stopped running to the door to see who was there. He had a blank
stare and it was as if somebody had turned out his bright light. That
same Pediatrician insisted William was just being eclipsed by his
talkative older sister and I shouldn't worry. Others insisted he was
a late talker (he had already been talking) and countless others
tried to ease my mommy guilt by reassuring me he was okay and
his ears needed to be checked after that bad ear infection. I had
his ears checked and they were fine.
Will lost interest in many of the things he'd loved previously
and didn't seem to know how to play with his friends anymore.
He was a boy that weighed 10 pounds at birth and always had a
very healthy appetite until he was vaccination injured. He hardly
eats anything now and can't even have fun stuff like ice cream
anymore because it makes his symptoms worse. We never, ever
returned to that Pediatrician & some days I wish I could bump
into her out in the store as people are telling me I'm a bad
parent because my child is overwhelmed by all the noise &
lights and not behaving appropriately in their opinions.
I went against that Pediatrician's suggestions and called Early
Intervention. I put William into a research study just in case
so I could circumvent the 18 month long waiting list at the
Developmental Pediatrician. We got the diagnosis of Regressive
Autism. That Developmental Pediatrician served me the blow
of my lifetime when she told me my son had one of the worst
cases of Regressive Autism she'd ever seen and so it began.
The thoughtless words from other people that feel like sucker
punches to my stomach. The thoughtless people that think its
okay to approach you in the store and tell you that bad parenting
is the reason my child acts like he does sometimes when we go
into a store that overwhelms him. Or the other people that say
"oh its genetics".....maybe it is but do I thoughtlessly point
that out to you when you tell me your loved one has Cancer?
When you learn of the impending birth of a new baby as parents
we all have such dreams for them. The sports, trips, activities,
colleges, weddings & Grandchildren of your own that you dream
of for them. Suddenly when you hear Autism all of those dreams
shatter all around you and its just you & your family left to pick
up the pieces & figure out if any of its possible for them anymore.
For me, it translates into not knowing for sure if I'll ever hear
my beautiful Angel say his own name or even I love you mommy.
Welcome aboard.......we've been expecting you.
Regressive Autism; I really felt as though there should have
been somebody like Julie McCoy from the Love Boat to usher
us into this new community & let us know what activities we
had scheduled. Developmental Intervention party of 2, ABA
party of 5 your tables are ready!!! Little did I know what I
really had ahead of me when the insensitive evaluator said as
her parting comment, "well at least now he'll qualify for the
Handicapped Preschool".
Initially, I felt like I wanted to run out into our quiet street
and yell that's the best you've got for me? You're the "expert"
and that's all you have to offer. Thankfully since that day our
family of 4 has been sent numerous angels to help us through
our journey on this crazy cruise. I won't lie to you either some
days it feels more like we're on that fateful 3 hour tour from
Gilligan's Island fame.
My precious Angel's name is Will. Will is going to be 4 this May
and has been diagnosed for almost two years now. William
arrived on Cinco De Mayo with great expectations from his
sister who turned 18 months old that same day. He was a
chubby faced, snuggly baby whose blond hair shone like a halo
as he camped at my breast. He weighed 10 pounds, measured
22" long and had 2 teeth. Yes, teeth!!! Our family was complete
and now my husband and I were living the American
Dream. Or so we thought until one cold day in December
of 2006!!!
Will hit his milestones and was developing normally according
to all the scales & the books. He was a loving, social, happy boy
and each time he smiled up into our faces we knew we were
blessed. When he was 18 months old he got sick for the first time
ever with an ear infection. It took two rounds of antibiotics to
clear it up. When we went back to the Pediatrician they said lets
get him caught up on some of his shots since his ear is all clear. I
had been going slow with vaccinations for both kids since learning
of other kids who were vaccination injured. I had told them I didn't
want an MMR until he was 3. It was on his chart in RED!!!!!!!!!
Megan (our daughter) was running through the office & I was
trying to catch her while the nurse & Pediatrician gave William an
MMR shot because they had it in stock. At first, I was angry that
they gave him the shot while I was chasing Megan around the
office. Then I was furious!!!!!!!!!!!!
I remember hearing his cry from out in the waiting room & knowing
in my gut that it wasn't the same kind of distress cry. Moms need
to listen to their instincts and not let other people make them feel
silly for it. He screamed & cried all the way home and on and off
for hours that whole night. When I called the Pediatrician she told
me he needed some Tylenol and would be fine. The next day this
other child was in William's place and that child lost all of his words
he'd already learned. I'll never forget that day or the sinking feeling
in the pit of my stomach when I lifted my angel out of his bed. The
realization that my angel was gone slowly sunk in as he didn't turn
to us with his chubby cheeked smile when we said his name or how
he stopped running to the door to see who was there. He had a blank
stare and it was as if somebody had turned out his bright light. That
same Pediatrician insisted William was just being eclipsed by his
talkative older sister and I shouldn't worry. Others insisted he was
a late talker (he had already been talking) and countless others
tried to ease my mommy guilt by reassuring me he was okay and
his ears needed to be checked after that bad ear infection. I had
his ears checked and they were fine.
Will lost interest in many of the things he'd loved previously
and didn't seem to know how to play with his friends anymore.
He was a boy that weighed 10 pounds at birth and always had a
very healthy appetite until he was vaccination injured. He hardly
eats anything now and can't even have fun stuff like ice cream
anymore because it makes his symptoms worse. We never, ever
returned to that Pediatrician & some days I wish I could bump
into her out in the store as people are telling me I'm a bad
parent because my child is overwhelmed by all the noise &
lights and not behaving appropriately in their opinions.
I went against that Pediatrician's suggestions and called Early
Intervention. I put William into a research study just in case
so I could circumvent the 18 month long waiting list at the
Developmental Pediatrician. We got the diagnosis of Regressive
Autism. That Developmental Pediatrician served me the blow
of my lifetime when she told me my son had one of the worst
cases of Regressive Autism she'd ever seen and so it began.
The thoughtless words from other people that feel like sucker
punches to my stomach. The thoughtless people that think its
okay to approach you in the store and tell you that bad parenting
is the reason my child acts like he does sometimes when we go
into a store that overwhelms him. Or the other people that say
"oh its genetics".....maybe it is but do I thoughtlessly point
that out to you when you tell me your loved one has Cancer?
When you learn of the impending birth of a new baby as parents
we all have such dreams for them. The sports, trips, activities,
colleges, weddings & Grandchildren of your own that you dream
of for them. Suddenly when you hear Autism all of those dreams
shatter all around you and its just you & your family left to pick
up the pieces & figure out if any of its possible for them anymore.
For me, it translates into not knowing for sure if I'll ever hear
my beautiful Angel say his own name or even I love you mommy.
Welcome aboard.......we've been expecting you.
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