There's No Welcome to Autism Packet........what now????

Surviving the Holidays with Autism in Your Life.

2011-01-08T15:06:00.001-05:00

The holiday season can be stressful enough without throwing an over-stimulated, melting down child into the mix. Stores can send an Autistic child into a tail spin this time of year. The lights, the music, the crowds….heck I’m not even Autistic and I’m feeling a bit overwhelmed! Don’t even bring up the parking situation!

I’m a glass half full type of girl so I always like to give people the benefit of the doubt. I still like to believe I’m capable of making Martha Stewart-esk holidays come true for my family all alone even if she does have scads of staff helping her. My linens will be pressed and the holiday meal perfectly timed. Haha!! All of my gifts will be wrapped with shiny wrapping paper carefully selected to match the tree’s theme too. My children will be dressed in coordinating outfits befitting both a boy child and girl child. The pictures will never have red eye and the cat won’t have eaten curly ribbon off the gifts either. Okay now I’m coming back down to earth.

In reality, I’m a lucky mom if I can keep my son from wiping food or his nose on his shirt as soon as I dress him. I keep it simple for myself by making sure I have more than one shirt that would match for quick changes. If I can frame up a photo and actually get both kids into it together it’s a Holiday Miracle. As our kids grow each year the holiday photos become a little easier and sometimes there’s even pictures of our son’s sweet face instead of a streak reminiscent of Dash from the Incredibles running by the camera. Take lots of photos because you might be surprised what you catch purely by accident.

Holiday meals can be fodder for nightmares for many years to come here. The gravy in my son’s hair, stuffing on his pants and icing from cookies all over his sweet face as he gives me a big hug & kiss are minor inconveniences compared to dealing with people who just don’t try to understand. I do my best to prepare our kids for conducting themselves properly amongst china, tablecloths and crystal by practicing. I drag out fabric napkins during the week & set the table for Sunday dinner with china so they understand better. If your child obsesses about candles and wants to jump up and blow them out while regaling everyone with their rendition of Happy Birthday then find some flameless candles or skip them all together. So far our practicing is working well and we actually had people complement our children’s behavior in a restaurant. They had no way of knowing how much that meant to my husband and me!

I’m certain those thoughtless people who tell you discipline would stop a meltdown are really just clueless & not truly insensitive enough to miss the signs that it’s not a lack of a backbone on your part. People that genuinely care about your family will want to know how to make your child feel welcome and comfortable as you spend the holidays together. If they ask, be honest. If they don’t ask, make suggestions. Don’t be shy! Most Grandparents, Aunts and Uncles would rather get this special child in their lives a nice gift than something that will never see the light of day in the playroom once the wrapping paper is gone. If it helps them try creating a wish list online if they’re tech savvy enough that will ease all of your minds. Often they can select gifts and even have items wrapped & shipped. A gift registry also helps to let people know your child doesn’t already have a certain item. No returns makes my life easier!

My son (aka the Undecorator) loves the holidays. He dances to the music and takes the ornaments off the tree as quickly as I put them on the tree. He loves to bounce the ornaments all around the house. Last year we had 3 Christmas trees decorated and my son was in Holiday Heaven! After he broke a dozen ornaments in less an hour’s time, I immediately headed to the shatterproof ornament section of a local store. I found some pretty options that complemented each tree’s theme and the Undecorator was pleased as well. Compromise makes for a happy family at our house. I will keep the bottom portions of the tree shatterproof if you don’t attempt to climb it or break anymore of the breakable ones.

Keeping your child’s favorite things (video game, a lovie, special toy) with you as you travel over the river and through the woods is a great way to ease any anxiety about new places. Encourage your child to show their friends and relatives their toy and how it works. You can practice giving and receiving gifts. Both of my children have struggled with the concept of giving gifts as they usually enjoy being on the receiving end better. Now I also try to include my kids in the selection, wrapping or making of gifts we give. Nothing warms my heart more than seeing my little guy who can’t talk run over to his friend and present a gift with a big smile on his face. Prepare others who may not have experience with Autistic kids. Explain to your friends and relatives that it isn’t that your child dislikes their gift or that they won’t enjoy it but more that it can get overwhelming opening too many things at once.

If it makes it easier then invite everyone to your home. Your kids will be on their home turf and you can establish a “safe zone” where they can go to wind down if they’re overwhelmed. This helps if you adhere to a strict diet too. I say if you decide to do this then put things in place for yourself to make it less crazy; hire a cleaning crew, order Holiday dinner to go from your favorite restaurant, ask others to bring specific things and make as many dishes ahead to make your entertaining easier. Give your family opportunities to succeed during the holidays if it’s making a Gingerbread House kit, enjoying the town tree lighting or being able to sit on Santa’s lap for a quick picture…embrace it all!! Let go of that Norman Rockwell vision and just make it all about enjoying time with the people you love most in the world. If there are people who don’t make your entire family feel loved and accepted then I say just avoid interacting with them. Cherish the small moments and revel in the love!

Happy Holidays!

Bon Voyage, Miss Rachel

2010-09-29T20:22:00.000-04:00

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!!

The Blessings of being the sibling of a Special Needs Child

2010-06-23T17:16:00.000-04:00

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!

"Surviving extra time off during the summer”

2010-06-07T23:13:00.000-04:00

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.

Riding the bus...........

2010-02-26T16:35:00.001-05:00

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.

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?

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!!!!

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.

2010-02-26T15:24:00.000-05:00

It's called Illuminate, decorate and fascinate. It can also be found here on Blogger.com

Funny thing about swear words.........

2009-09-16T16:04:00.000-04:00

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..........

2009-09-16T14:57:00.001-04:00

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.

2009-08-13T13:33:00.002-04:00

***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............

2009-07-23T14:46:00.000-04:00

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.....

2009-07-01T17:00:00.000-04:00

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........

2009-06-15T13:20:00.000-04:00

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.

When Angels pass through your life........

2009-05-29T11:18:00.000-04:00

We've had an Angel pass through our lives & touch our hearts. We moved into my husband's Grandfather's old house after he passed away and shortly after our arrival we met our neighbor's Bea and Tyler. They lived next door to each other around the corner from us & had adopted each other. They had often visited my husband's Grandfather while he was housebound and came to meet the people who were taking his place. We too would soon be adopted by this angelic pair.

Bea was a true blessing in our lives while we had her. She was a former Nun who left her order to marry the man she fell in love with and become an Occupational Therapist. Tyler was a boy who lived next door to Bea with his Grandparents that was affected by Fetal Alcohol Syndrome. Bea had taken Tyler under her wing from the time he was 18 months old and worked with him to help overcome his physical deficits. He flourished under her care. Soon you couldn't even tell he had any type of issues the way he ran around with all of the other kids & played baseball. She was his rock when his Grandma suddenly became gravely ill and died. They did all sorts of stuff together all the time. She got him to eat veggies & took him on trips to expand his horizons. They went on adventures and learned all sorts of interesting things together.

Bea always had a kind word for each neighbor and would often be seen heading off to prayer meetings, church or Yoga on the beach at dawn. She would accompany the neighborhood widower (also a widow herself now) to dinner and go out dancing with her friends. She helped rescue stray cats and ensured they would be neutered to help control the stray population. She took in other cats who needed homes and loved them like her own children.

She was my Angel in so many ways. She would often pop up at the door just when I needed a couple minutes for myself to take the kids for a walk. Or would always scoot around the corner to stay with the sleeping kids while I ran to store or picked my daughter up from preschool. There were times it was almost as if God had sent her. She never judged if the toys were all over or if I was still in my pj's at 11AM. She would simply say "motherhood is God's work but even mommy's need a break". How true that was!!!

Never did a negative word come from her mouth and anytime she heard of others struggling she'd say quietly; "I'll pray for them" and she did. Her faith was inspiring. She would tell the kids wonderful versions of the Bible stories and encourage such excitement & faith in them as well. She never complained and always found the silver lining in every cloud. Her love would just surround everyone around her and there wasn't ever a time she didn't welcome anybody who knocked at her door. She was always excited to see our latest renovations or the kids' newest work of Art. She would often stop by to play with our kids all the while doing OT types of play with them but making it so much fun they didn't know the difference.

It was this time a year ago that Bea called to tell us she wouldn't be able to join us for our son's birthday dinner & cake as she had since we met. We thought it was odd because she complained of not feeling well and she was rarely sick. It wasn't until she called and begged off for Mother's Day too that we immediately knew something was remiss. I went over after dance class the following day and found her struggling to walk & hold things with her left hand. This was instantly a red flag considering how active & healthy she had always been. We got her appointments with her regular doctor and a Neurologist. When her siblings and nieces & nephews learned of her struggles they came and whisked her off to NY for more doctor visits.

Only to be told that she had terminal Cancer (Brain, Lung, Bone) and to put her affairs in order. Her family didn't know she had already done just that when she had some Basal Cell Carcinomas removed from her eyelids the winter before her diagnosis. I remember thinking when she asked me to come & witness some of the changes with her Attorney that something must be wrong. When I asked her she kept things upbeat and simply said I'm not getting any younger and told me I had other more important things to worry about & changed the subject.
She asked to return home to her cozy cottage on the water where she had spent her married life with her husband. It was a tiny, storybook like cottage they had lovingly surrounded with beautiful flowers and religious figures. It was a place you could escape to and watch the boats go by and listen to the waves.

Her family was all hours away so my husband & I did all we could to help her. We got her things to make her more comfortable. We called and asked old friends to come & visit her and the people just flocked to her door. They would tell us how Bea was tireless in her work as an OT for Special Needs children. Or how she helped them get sober or to find God. Each week we drove her to her doctor's appointments & Cancer center visits and as she endured pain & discomfort she never forgot to thank each person as they finished giving her a Cat scan or fitting her for a Radiation mask. We were meant to help her on her journey back to God; it was a good thing we did because her family didn't know she was Diabetic or had had those Carcinomas removed.

There were frantic calls in the middle of the night when she was disoriented and then one fateful night a call that she'd been taken to the hospital. I kissed my sleeping babies & left them in my husband's care as I made frantic calls to alert all of the family members, friends and her Clergy on the way to the hospital. She had a list of people she wanted called to be with her and her area in the ER was packed with neighbors, Priests, Deacons, some of the family members who were closest.

It was that night we were informed of her Do Not Resuscitate order. There were Clergy there from every church in the area and we all prayed for a quick return to her God she so loved. It was as though she was waiting for others to come & say good bye before she left us. It was a calm, peaceful passing as she quietly stopped breathing and had a peaceful smile on her face. The funeral home, church and reception afterwards were packed and each person had another story to tell of how Bea had impacted their lives. She was loved so dearly by so many.

Its hard to believe she died almost a year ago already because her memory and her love are still so fresh in our hearts. My life has been touched by an Angel and I am a better person as a result. I hope to someday have had the same kind of influence on as many people's lives as our Angel Bea did.

Happy Mother's Day........

2009-05-18T21:22:00.000-04:00

Mother's Day can be so many things for so many people.
It can be about loss, disappointment, love, anticipation and
just pure joy. Loss if you've ever lost a child or had a miscarriage
and disappointment for the moms-to-be who struggle to become
pregnant. I often think of how blessed I've been for these last
5 years of Mother's Days to have my beautiful children to make
me one of the lucky ones who can celebrate this day.

It also reminds me to pray for those moms in my life who
know loss and disappointment and may be feeling a bit sad.
I pray for the people who have already lost their mom or a child.
I pray for those people I know who are trying so hard to become
moms themselves. I pray that my daughter will also know the
joy of motherhood one day too. Then I always thank God for
My Mom, My Grandmothers, my "Aunt Connie" and my sister;
who all taught me how to be a good mom. They taught me to
love even when you're exhausted and feel like you have nothing
left. Every day they were/are examples of sacrifice for their
families and especially children; who bolster my spirits when I
need it most.

Mother's Day for me also often means a birthday. This year it
was my birthday but other years its my sister's or father's
birthdays in our family. My mom has always been such a good
sport about sharing her special day with us all over the years.
She would bake cherry chip cakes for me, or pies for my dad.
We would go out for dinner, stay home & BBQ and many years
we all met up with my Aunts, Uncles and Cousins to celebrate
with my Grandmas too.

I was pregnant with our daughter one year and 18 months
later brought our son home just in time for Mother's Day. I can
still remember the breeze in my hair as we carried our son in the
house and I wrapped my arms around my tiny daughter. I was
nervous, excited and so thankful all at once. I looked at my mom
and she too had tears of joy in her eyes and could probably think
back to a similar Mother's Day with a newborn baby in her arms
all those years ago.

This year was the quietest and one of the nicest Mother's Days
I've ever had. I didn't have to get all dressed up and got out for
dinner. I didn't have to iron everyone else's outfits & get them all
ready to go either. I stayed in bed and read the paper (ahh current
events) and drank my coffee while my family wrapped my gifts
& got breakfast ready. I loved listening to the excited giggles as
my "babies" helped Daddy get everything all ready. My most
favorite part of the day was that I got some of those memory
making, cherish forever types of gifts that the kids made me at
school. Picture frames, handmade cards, handmade giftwrap
& stationary along with romantic, thoughtful & even a funny
card too from the man who made me a mother.

Happy Mother's Day ladies! We're all blessed in our own ways.

A parent's worry.

2009-05-12T15:05:00.000-04:00

When you haven't had your own kids yet you don't completely
understand how much people love their children. You wonder
about those people who don't get divorced because of the kids
and say to your other single friends "I'd never stay" and they
all nod. You can't understand how people just stop making time
for themselves and they give everything to their kids. Again,
you & your single friends all agree you'll still go to the spa every
month & never forget to make time for yourself. That you would
still be well versed in current events and read all the newest
books. You also just can't REALLY understand why your mom
STILL worries about you.....at your age. LOL

Then you take that test, see those pink lines & go for the
confirmation ultrasound. The thrill of knowing that you're
creating life is such an amazing feeling & you fall in love immediately!!!
You see that tiny heart beat in that little sac of cells & you just
know they'll be the next Nobel Peace Prize winner or something
equally as terrific!! Suddenly, you're a parent & the worrying starts.
You worry about how much folic acid to take, if you should take
more vitamins since you have terrible morning sickness & they
exited your system as quickly as they entered. You worry about
c-sections, Strep B, Vitamin K shots, nursery colors and nobody tells
you that's nothing compared to what comes next. All of the other
parents want you to join their club so they never let on until after
the sperm has met the egg that you worry every day of your kids'
lives. What the parents of Special Needs children quickly learn is
that you have even more things to worry about than other parents.

You worry if your child is getting enough therapies, if they're being
socialized enough, if they'll regress while school is out before
extended school year starts. Then its what types of things
(dyes, lactose, etc) provoke behaviors or bring on bouts of GI
upset. How to set up a Special Needs trust in case you get run
over by a bus tomorrow. I worry my son will wander and get
hit by a car, taken by a stranger or worse drown in our front
yard!!!! I find myself losing sleep sometimes because of the
worries but each day just try and remember that God has
given me this child because he has faith that I can do it.

I remember as a little girl my mom was the school nurse at
our local ARC and sometimes we would go there. We were
always taught tolerance so we didn't think anything of playing
with the students there. We would see them at our church or
out in the community. They were always so happy to see my
mom & us that they'd run over and give us hugs & say hi.
My mom used to say that God gave the special needs kids
faces of angels because once you look into their kind, gentle,
loving eyes nobody could refuse them help. I often find
myself praying that people feel that way when they look
into my sweet boy's face. Its a constant worry that people
might be mean to him because he can't talk. I already hear
my courageous, feisty daughter defending her brother
when other kids say he's dumb he can't talk. It makes
me so proud that she's not afraid to stand up for him
even when her friends may think he's different or not
as good as them.

As a mom you always want to rush in & fix the hurts,
boo boos and take their pain upon yourself to spare
them. Now that our daughter is going to Preschool;
I hear stories of the teasing and it saddens me to
think that all this time since I was a 5 year old; kids
are the same. If somebody's different single them out
& taunt them. My daughter doesn't see any differences.
She doesn't know anything other than if they're nice
to me then I will play with them. It doesn't matter if
they're from the wrong side of the tracks, a different
religion, race........nope she's just looking for some nice
kids to play with & have some fun. My beautiful,
sweet hearted daughter isn't afraid of befriending
any child.

Her depth of character and compassion at 5 is inspiring!
She always has a kind, encouraging word for each person
she encounters and its my sincere hope that her spirit will
be infectious. Each day she inspires a new kind of pride in
my heart as I watch her grow into an even more loving
& caring individual who stands fast in the face of peer
pressure.

Melatonin and Autism......

2009-05-02T00:09:00.000-04:00

Our kids have always been great sleepers from the time they
were babies. Once we figured out that both had "silent reflux"
then we were able to manage it and they slept through the night
even though they were both nursed. It was so great for us to lay
them in their bassinet at 9:30 PM and be able to sleep until 6
or 7 AM. We didn't realize how much we would miss that sleep
until it became such a habit for our son not to sleep.

Sleep deprivation can make people crazy!!! You'll drive away
& leave your coffee on the roof of your car, you forget things and
sometimes even scare yourself with your own version of auto pilot.
I've gotten to my daughter's preschool & been so tired that I wasn't
even sure I drove there. I lost my car in the parking lot one day
because I was so tired but to make it better I had driven my husband's
car so it took me even longer to find it. LOL

Out of desperation I started doing research into Autistic children
& sleep disturbances. I couldn't have been more relieved when I found
& read the research about Melatonin being used with Autistic children.
Well I called my Pediatrician right up and asked his advice. He hadn't
read it but promptly did and called me the next morning to say he
didn't see any reason not to try it. I must say our new Pediatrician is
very supportive & encouraging. He's especially good about reminding
my husband when he's in the office not to forget I need a break too.

Thus began my pursuit of Melatonin and a safe way to administer
it to my son. I read online & called my Pediatrician again who suggested
I try the vitamin or health food stores. I found it in a liquid and began
putting a drop in my son's dinner time beverage. He was sleepy almost
as soon as he was done eating. We got him right into his pj's and ushered
him off to bed without a complaint. My husband & I did the sleepy time
dance and then promptly went to bed ourselves at 9PM. When you're
as tired as we were you'd try anything too.

You must keep to a schedule and make sure they don't go for too
many days straight without a break from the Melatonin. They can
build up a tolerance or even become immune. When I say this was a
life saver its no exaggeration. Driving tired is just as dangerous as
drinking drunk. I won't deny that there aren't still days that Will
isn't awake at 3AM but its usually if he's getting sick or having a
growth spurt again.

Marriage and Autism..........

2009-05-01T10:08:00.000-04:00

Yesterday was my parents 43rd Wedding Anniversary and its my
sincere hope that my husband & I may achieve something close to
that some day too. My parents marriage is something to be
commended in so many ways. They're good friends to each other,
they still share an affection for each other and boy do they stick
together. My parents have weathered many challenges in their
married lives as most couples do. They've seen each other through
the illnesses & deaths of some of their parents, my dad is a Cancer
survivor. They've raised, educated & married off 4 kids and are
excitedly awaiting the impending birth of their 6th grandchild
(plus 2 fur grandchildren Bella & Jasper LOL) this summer.

Its startling to see that parents of Autistic children have
astronomically high divorce rates. So here is my question.........
what if anything is being done to keep these families intact?
Is the NIH or Autism Speaks doing any research into what
causes these families to fracture? One of the most important
things we as parents or caregivers of Autistic children can
do is provide consistency but how is that being encouraged by
outside forces? Should it become a mandatory course of treatment
for the entire family to participate in therapy sessions? If health
insurance companies were forced to pay for family/couples
therapy for Autistic families would the divorce rate then plummet?
Do parents of Autistic kids not get therapy because they're
squeezing every cent out of their budgets to provide biomedical,
therapeutic or other various interventions for their child instead?
Is there a need for more therapists to be required to interact with
Autistic families as part of their training? Does a law need to be
put into place so each Autistic child's family can receive respite
care? I understand its available but have yet to find the time to
fill out the 85 pages of applications & send in the 75 pages of doctors
reports to substantiate that my child is in fact Autistic & should
receive respite care.

Parenting can be challenging to negotiate for a couple but then
introduce the other things like sleep deprivation, constant visits
with therapists (in home or in office) aka no privacy, the added
expenses of raising an Autistic child. Apparently that converts to
a 20% success rate for parents of Autistic children and I want to
know who is fighting to change that? In our family that translates
into my husband working more than he should to try and provide
all that our family needs while I hold down the fort at home.
Certainly it hasn't helped our chances of success because we live
in New Jersey; apparently not only the home of sky high Autism
rates but also a crazy cost of living and some of the highest
property tax rates in the country. Thank you Governor Corzine!!

Ask yourself.......what can I do to help these parents make their
marriage more successful? How can I help to keep these families
intact?

Happy Anniversary Mom & Dad! You've been wonderful examples
for all of us kids. Thank you for all that you do to try and keep my
family intact & successful. I love you both dearly.

What a beautiful day.........

2009-04-25T22:09:00.000-04:00

The weather was the best its been yet this Spring today on
the Jersey Shore. We enjoyed ourselves being together &
getting outside for much of the day. Naps came after hours
of giggles & squeals of glee about the sand & water table being
filled up. My husband & I got a bunch of stuff done outside &
around the yard so it was a A+ day all around here.

It was also a beautiful day for another reason too.......my
son is making strides lately. He had the week after Easter
off so we did a Yeast/Candida die off, changed him to Almond
milk and started a new probiotic at the same time. Last year
around the same time we started getting great results after
introducing Fish Oils & B vitamins. Its Easter a time of fresh
starts & rebirth right? So I figured why not! We all said our
prayers & jumped in head first.

I've said before it was almost like somebody turned off my
son's bright light when he was injured by the MMR. Can I
just tell you that now its more like somebody put it on a
dimmer switch & it just got turned up a notch. My son is
more engaging than ever now. He's seeking out company
again and can be seen hugging & kissing all the people he
recognizes. He's seeking out eye contact & holding our
gazes while giving us a nice big social smile too. My sweet
boy is even starting to do funny things like his sister does
and stopping to wait for us to laugh & he joins in too. My
heart is feeling like it could overflow now as I'm blogging
about it.

Tears came to my eyes & my 5 1/2 year old daughter
came over & said what's wrong and Will was right behind
her with a kiss & rub on the back for mommy too. All of you
other parents of Autistic children know what a HUGE DEAL
this all is for us. We sent him back to school & everybody
noticed the change. He has been eating everything in sight
lately which isn't unusual but normally he just wants to eat
junk or only one or two things. Suddenly, he'll eat anything
on his plate. Even if he doesn't eat it all he'll try it now; this
is a profound change for William. I scared the heck out of
him the other night when he ate Peas cause I whooped so
loud. LOL

He's also being a much better listener about 85% of
the time. That's huge because we used to have to ask
him not to do something several times or make him comply.
Now he does it on the first time asked. I'm starting to
wonder if my daughter wouldn't benefit from the same
things in her diet too. LOL Does anyone know if Omega 3
is good for sassiness? All joking aside; most Autistic kids
struggle with GI issues at various points of their lives.
Will had terrible issues & things just seemed to run out
of him. Not now!!! He's even getting back to normal for
that kind of stuff again too which wasn't ever a problem
prior to his vaccination injury. The smell is terrible but
I'm attributing it to the fact that his system is flushing
the toxins out and if it wasn't bad for him then it wouldn't
smell so bad either.

Its a beautiful day!

2009-04-24T18:17:00.000-04:00

I asked for some feedback from some people & someone told me

they felt my blog was negative. Our William is a blessing Autism

or not. He's taught me patience & perseverance while also raising

me up to a higher level than I ever thought possible for myself.

Its been 2 years since Will was diagnosed but I won't deny that

I didn't feel discouraged, scared, unprepared, guilty (like I did

something wrong or ate the wrong thing) at first. I was nervous

that I wasn't a strong enough person to raise a Special Needs

Child. I'm okay with saying that out loud.

I'm not perfect and its not always easy guiding our son through

this journey but God has entrusted this Angel to me & I will do

all I can for as long as it takes. I'm thankful each day that I've

met the kind, generous, experienced fellow warriors that I have

already. They bolster me up & renew my faith in the possibilities.

Upon Will's diagnosis, my husband & I went through our

individual struggles with wrapping our minds around what it

meant for Will & our family as a whole. I don't think there's

anything wrong with admitting your true feelings so that

others can better understand that how they're feeling is also

okay & acceptable. I've never been one of those moms that

made it seem as though there wasn't a thing I didn't love

about motherhood either. I'm honest. Hey you know what....

sometimes its not always fun having an audience while you

try to visit the rest room. I think that's true for most moms

& I'm okay saying that too.

Personally, I think its negative when I hear about families out

there not doing all that they can to help their kids. I read, research,

ask other parents and seek out any and all experts I can find.

I don't think its negative that I helped several parents in my

daughter's Preschool class exempt their kids from vaccinations;

or that I'm not shy about sharing our story & introducing my son

to new people so we can help foster education & tolerance. I won't

deny either that its a concern of mine that our "typical" child will

feel left out or become too much of a caretaker as she gets older.

I try to channel her desire to help into the pursuit of a dream of

becoming a Doctor or Therapist. She vacillates between being a

Veterinarian & "an Autism Doctor". Heck maybe she could be the

Vet for a barn full of Hippotherapy horses when she grows up.

This blogging thing is all new to me but I felt like I had experienced

something people could connect with and learn from just as I have

from the more experienced parents of Autistic & "typical" children.

We've started trying more biomedical interventions to go along with

PECS, OT, PT and Speech. If funds were unlimited then we'd be

doing Hippotherapy, B12 shots, HBOT, GFCF diets, etc. Funds

are limited but we're also working on that and Will is going to have

what he needs.

I hope you'll come back again as I share Will's story with you &

let you see what works for our family. Maybe another family

could also be helped in the process too.

How I learned to take more things in stride.....

2009-04-23T20:52:00.000-04:00

Sure when you're a mom you start taking alot more things in
stride as a right of passage. You get spit up on, tinkled on & you
just never know when you could have a glob of something on your
shirt or in your hair. When our kids were babies they were spotless.
If they got messy I wiped them off, changed their clothes or "spit
shined" them quickly when nobody was looking. Their little outfits
matched much of the time once we had Will.

Now that our son was vaccination injured & diagnosed with
Regressive Autism that's all gone out the window. My life used to
be much more Martha Stewart"ish than it is now. We had nice things
looking pretty set all around the house, framed photos, beautiful live
plants flourished and things were so organized. Our beds were made
& laundry all folded nicely in everyone's drawers.

Will is the anti-organizer. If I fold it, he unfolds it. If I make the
bed he messes it up over & over.....he loves that game. I find
Geotrax guys buried in my plants after I drag Will & our cat out
of them. There used to be a day when I would not let people in my
house if the dishes weren't done. At this point my feeling is love
me mess & all. I know it makes my mom & my sister uneasy when
they see it. My husband still remembers the Martha Stewart days
& believes in his heart they'll come back.

Martha does struggle to get back in the door for every holiday
but the anti-organizer arrives & then it gets interesting. LOL Will
likes to undecorate the Christmas tree as fast as we decorate it. I
think so far one of my favorite mommy moments with him is seeing
his chubby cheeks stuffed full of Christmas cookies and hands covered
in icing as he helped himself to a snack and danced to the Christmas
carols his sister loves to listen to year round.

The best part about learning to take things in stride is the
realization that my kids will only be little for such a short time.
They won't remember if the house was spotless, their hair neatly
brushed or the laundry Clorox clean; they'll remember if I played
with them. My daughter loves to have me tell her Princess tales & my
handsome son loves it when I crazy dance with him. The belly laughs
I hear from him as I spin him fast make all the sleepless nights &
worrying about him all worth it. Feeling my daughter's tiny hand in
mine as we walk along "finding nature" will warm my heart on all of
those evenings she's not speaking to me as a teenager.

Why isn't there a welcome to Autism Packet?

2009-04-22T21:29:00.000-04:00

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.

Hi....I'm new here.

2009-04-22T21:11:00.000-04:00

I've been cautious about blogging until now. I was worried I
wouldn't be funny enough, informative enough or interesting
enough. Then I decided what the heck I have nothing to lose
and a lot of the stuff that happens in our everyday lives is
pretty funny sometimes.

We have had days when our son wouldn't keep his clothes on
and we'd see a naked little white butt streaking through the
living room. Or he'd be climbing the grids in our old divided
light windows while naked......did I mention it was an 11X15
window on the front of our house and we used to live on the
corner so everyone could see him coming and going. LOL I'm
sure our neighbors would tell people to take a left at the naked
boy in the window on the yellow house while giving directions.
We would just laugh to ourselves after signing for no and putting
his clothes back on again. It’s never boring!!! Especially those
days that he digs in my plants, tries to escape the house or
flushes the potty 20 times an hour now that he's finally potty
training.

Then, I have my days like yesterday when my son melted down
in the Orthopedist's waiting room as the reception staff complained
about the noise & some mom of "typical" kids glared at me. Trust
me if I could have gotten him to stop head butting me, pinching me
or screaming I would have done it. Thankfully my husband was able
to join us at the doctor's appointment & helped me get him settled
down. I did wish for one of those scrolling LED displays above my
head that said sorry he has a difficult time waiting 2 hours in a
waiting room now that he has Regressive Autism after being
vaccination injured by the MMR.

I'm sure prior to having my own kids I passed a judgmental glance
or two myself. I just want to offer any of those parents where ever
they are now my apologies just in case they were walking a mile in
my shoes before I ever even filled them. Its all of those pioneers
that haven't given up and haven't stopped looking for something
that can help our kids that have made it better for kids like mine
now as a Preschooler. I applaud all of you parents for not giving up!!
I know its not easy & you often sacrifice all that you are for your
children. Thank you.