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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!!!

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.

We have been busy....good busy though.

***Our lives got super busy and we got wrapped up in living it so
some of these are out of order but still makes for fun reading. ;)

This past week we went for our second POAC surfing
event of the year and loved it. The families, volunteers
and weather all made it the "must be place for the
Autism set of NJ". We laughed, frolicked and played while
feeling the quiet contentment of acceptance. Which
isn't always easy to come by when you have an Autistic
child and surprisingly enough so many people still just
don't understand.

You didn't have anybody who thought they were being
helpful telling your "typical" child they couldn't surf because
it was only for the "special kids".....aren't they all special?
They said as POAC always does....siblings get to go too!!!
Yay!!!

I'll admit it I was nervous my two small 40 pound kids could
get whisked away by a rip tide or stung by jelly fish. I bucked
up and said you'll never know until you try and jumped in with
both feet. Our son is fearless of the water and it's a constant
on my mind every second of every day. He was in Heaven
when they took him out into the waves. He smiled and squealed
as he "rode the board". To my crazy, over-protective delight
they never actually let them go into the surf alone. Ahhhh.....no
constant watch for rip tides sweeping them away and being
prepared to pounce. I got to relax, take pictures and enjoy my
kids while they enjoyed themselves.

Our daughter is a completely different kid.....this one cries if she
gets water in her face in the shower. No exaggeration when we
wash her hair the people in our neighborhood must think we're
killing her. She yells I can't breath or help me!!!! DRAMA!!!!!
LOL It's all part of what makes her such a special girl though.

Well she was a trooper and even though she was leery she
wanted to try. She even did a great job and of course never missed
a photo op even while drying every spec of water that splashed
up on her face. LOL She hooted and hollered for her brother on his
rides in the surf.

At the close of the day I asked her, "what did you think" and she
replied I can't wait for the next surfing event so William will smile
and laugh again like he did today. I tell you this girl is so sweet and so
selfless so much of the time. Sassy might be her middle name but
love and compassion are her first and last names.

A special thank you to Mark of No Flat Earth in Brick, NJ our proud
sponsor!!  The gift you give our kids is something nobody's negative
comments can ever steal away from them.  Kudos to you and your team
Mark!!!!!!!!!

Good still does prevail............

I have been super busy and keep thinking I should blog about
this or that. Then I find 8,000 other things that need do be
done & I forget about it again. Today I'd really like to tell you
all about this nice man I've gotten to work with via my charity
position.

I've only ever spoken to this man on the phone but I'll tell
you what....there are still people with good, generous hearts
left in this world. This realization couldn't come at a better
time when I've been confronted with some other situations
lately that make me think mean people suck.

Okay so back to "my friend" who called the charity up and
said I am blessed to have typical kids but I would like them
to learn tolerance and to see that not everyone is always the
same. He asked if he could give us money to throw a party
so his family could join us and meet our kids. Well the emotion
of knowing that this man knows my child is different than his
but he still wants his kids to play with him just overwhelms me.
It encourages & reassures me that there is still good left in
this world. He has an employee who has an Autistic son and
he simply wanted me to find a party his "buddy" would enjoy
and he can bring his children to as well.

I got him a bunch of prices and sent them along with a little
note thanking him for even considering doing something like
this for my child and all of the others our charity services.
Before our son was affected, we didn't understand how Autistic
parents felt outcast & ostracized by others. You get almost
self-conscious of people staring because maybe your child is
screaming, crying, stimming or writhing around on the floor.
This man and his family are like a breath of fresh air to our
families and I told him that. I told him how blessed that
employee was to have an employer like himself who cared
enough to give of his own time & financial resources to all of
these kids. I thanked him for all of us Autism parents for
trying to become part of the solution and planting the seed of
acceptance for our kids.

I know that this man's money will have been well spent &
he'll feel it in his heart when he sees all of the smiles & hears
all of the squeals of joy from our beautiful kids. Any man who
gives that to an Autistic child should walk a little taller because
he's a man of great character & generosity.

Invitation to the Board of Directors.....

Recently, I received a phone call from a man who I think just may have the biggest heart ever. It was the President of Parents of Autistic Children, a New Jersey charity. My husband & I have thought this charity is just fantastic since we found them. Then we had the pleasure of meeting Gary, it's President and we knew then why it was so special.

That day's phone call was not at all what I expected. I thought oh good maybe they're finally going to take me up on my offer to help fund raise. During my professional career I had the opportunity to organize several charity events and it felt so fulfilling. Honestly, I was missing the stimulation of working even though I cherish every single day I have at home raising my kids. No that day Gary was calling to invite me to join POAC's Board of Directors.

I can tell you I was shocked!!!!!!! Then I was so proud I thought I might burst. Naturally the first person I wanted to tell was my husband. Now I've always known he thought I was a real catch...LOL but that day I saw the pride in his eyes too. He often tells me how much he appreciates how hard I try for our son and all I sacrifice for our kids. Then I called my parents to tell them & what a great feeling. Being the 3rd child of a group of well educated, accomplished kids in my family it's always been tough to be extraordinary. That day I heard the emotion in my parents voices when they told me how proud they were of me & how perfect I was for this position. I was perfect for this!!!! The best part was my daughter's reaction...she gave me a big hug and told me she knew I would help all of the Autistic kids. Awwww!! My sweet girl.

Well I gladly accepted and am having a great time already. If you haven't done any charity work I would suggest it for everyone. My husband & I watched Gary & the other board members in action at the recent 9th Annual POAC Family picnic. That man & his team put smiles on peoples' faces & they remember names, the kids' names and boy when I grow up I want to be just like Gary. He always makes everyone feel welcome, encouraged & supported. What more could an Autism mom ask for out of life? POAC is a place where you finally find something free (Autism is NOT cheap to treat), feel supported & encouraged while also receiving valuable information & training.

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.