Saturday, January 8, 2011

Surviving the Holidays with Autism in Your Life.

  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!  

Wednesday, September 29, 2010

Bon Voyage, Miss Rachel

Our son was just 19 months old when he was vaccination injured. It was shortly before our son was injured that a young angel blessed our lives; we call her Miss Rachel at our house. Back then my husband would often leave before our kids were awake in the morning and return after they had long been in bed. I’m not going to lie to you….I was overwhelmed and literally suffering from exhaustion due to insomnia. I felt like I needed to learn and research everything I could find and I lost a lot of sleep worrying about what the future would hold for my boy. Thankfully Miss Rachel arrived on the scene to give us all a break!!

It is scary when you have a Special Needs child who isn’t verbal when it’s time to go out for the evening and leave them with a babysitter. After our son became affected it took time before we left him with a babysitter. Autism tears families apart and our family promised each other to fight with all we had to not become part of the Autism divorce statistics. My husband changed jobs and began working from home which gave him more flexibility to spend time with his family. Things were falling into place so you can imagine how desperately we needed somebody like Miss Rachel in our lives!!

Rachel had great references and was CPR certified & had aced the babysitter course. We knew her mom who had been Megan’s mommy & me teacher so we were confident leaving the kids with her. We had our Occupational Therapist train her to do sensory diet types of things with our son. It’s always nerve wracking to leave your kids with anybody new. We put our faith in Rachel and went out on a date. Rachel was wonderful!! We had a wonderful dinner out & Megan had her hair braided and both kids were in bed asleep. Yay! It’s so nerve wracking when you have a Nonverbal Special Needs child because what if they can’t identify their needs, get sick or are afraid or just want mommy. Certainly our typical child can tell us what happens while we’re gone but sometimes you may need to leave just the Special Needs child with a sitter. “Miss Rachel” instantly had a connection with both of our kids and it was almost as though she understood our son’s cues & babbles as well as we did. He would instantly go right over to her when she arrived and rarely gave us a hard time about leaving.

Miss Rachel is a life saver! We’ve grown closer and more attached to her as each year has passed. We have enlisted her to help our family in our charity work which she did enthusiastically. She’s been there for family events, she’s helped wrap our Christmas gifts, and she’s helped us move and watched our beautiful children grow. We’ve had the pleasure of witnessing what a wonderful young woman she’s become as she learned to drive, taken her first job and graduated high school. We had hoped she would still be our sitter when she came home on breaks from college. We had visions of family vacations accompanied by Miss Rachel while home on break.

Alas, she applied for a job and she will now be calling Uncle Sam her employer. It’s with heavy hearts that our family will usher our “Miss Rachel” off to Naval Boot Camp this coming week. We certainly hope Uncle Sam understands what a wonderful, dedicated, caring new employee they’ve just gotten. Uncle Sam’s gain is certainly our family’s loss. Our Miss Rachel will always be a member of our family and we hope that if our favorite “sailor” is ever in a port nearby that she’ll be sure to visit often. Thank you Miss Rachel for loving our kids and helping us keep them safe & entertained. Thank you for taking the time to understand each of our kids’ “specialness” and embracing it. We love you like our own, Miss Rachel!!

Wednesday, June 23, 2010

The Blessings of being the sibling of a Special Needs Child

This topic is close to my heart today as my beautiful, daughter basks in the glory of just having won an award at her annual dance recital. She is a devoted sister to our Autistic son just 18 months her junior. She does her best to be patient as we do our best to meet our son’s needs. Yet only being 6 years old; the jealousy beast does still have times when it rears its ugly head. Dance is her special time that’s just for her. We do our best to ensure her brother doesn’t come to class which then makes it all about Megan time with Mommy.

She has really started to come out of her shell and it has become obvious as she smiles ear to ear the whole time she dances her Tap & Ballet dance numbers. Her brother enjoys seeing her come onto the stage and often calls out to her because he recognizes her. It has taken some practice but he now is able to sit or at least remain in the same general area for the majority of the recital which is in itself an accomplishment.

Megan’s dance school is run by a young woman who has a great deal in common with my daughter as she has already walked a mile in my daughter’s street & dance shoes. “Miss Amy” is the sister of a Special Needs brother and knows my daughter’s heart. She knows the heartbreak of having other kids not say nice things about her sibling, being disappointed when the best laid plans don’t work out and sometimes just wanting some special time for herself. She knows the love of a brother and the lessons it teaches you. It has taught both “Miss Amy” and our daughter compassion, acceptance, generosity of spirit and patience. It is therefore fitting then that Megan win the “Little Miss Amy” award for being a Leader (translation-bossy LOL) & being a lot like “Miss Amy”.

Sadly, Miss Amy’s brother passed away but is still honored each year by her charity fundraising dance recital. Our family gladly participates with “Miss Amy” because it is also our hope that through our example Megan will also honor her brother via charity work. It is also our hope that Megan will discover a love of life that she can express through dance or music, or sports or anything that makes her feel accomplished as “Miss Amy” has and translates it into a lifetime of joy.

Having a Special Needs sibling has made “Miss Amy” into a role model of compassion, patience and acceptance who makes each child in her life feel welcomed, cherished and loved as they pass through the studio doors. She is their role model, inspiration and strict but loving educator. The children flock to her when she enters a room and she helps to mold them into inspirational souls as we parents entrust our young charges to her each week. My daughter also is blessed to have an Autistic brother who has already taught her so much and still has so much more to teach her.

Congratulations to my beautiful, dancing Princess Megan on her “first dance award” and here’s to hoping she will continue to be cheered on by her loving brother for many years & numerous awards to come!

Monday, June 7, 2010

"Surviving extra time off during the summer”

Summer brings to mind so many fond memories of wonderful days on the water for me as a child. The days of swimming, riding bikes, fishing, being on the boat & playing outside all day are some of my most cherished memories. Even those wonderful rainy days curled up with a good book were wonderful. As kids my siblings and I were subjected to “child abuse” LOL or so we thought at the time because my dad would discontinue the cable television!! I know a travesty right? The good news is we all survived and perhaps are even more interesting and certainly well read individuals.

All of those happy memories made me want to also give my kids a little piece of that. Our son spends a great deal of his summer vacation time in extended school year so we try and capitalize on our time together. My husband and I both love the water (ocean, lake, river—we’re not picky!) and wanted to instill that in our son and daughter. Having an Autistic son sometimes makes some of the events a challenge but he’s quickly learning to enjoy them as much as his sister does which increases my husband’s, my daughter’s & my enjoyment of it all too. It plucks at my heart strings to see my son excitedly running down the beach after his sister flying a kite or trying so hard to help build a sand castle.

If you’re going stir crazy and need to get out of the house:

Find air conditioned gym places (Bounce U, Twisters, Little Gym) for open play time
*** A bouncy kid is a happy kid at our house.
Check out aquariums, museums, area parks, historic sites and conservation tour areas.
*** They have great touch & feel museums, children’s displays or walking tours if you check their sites.

Search for area charities (Surfer’s Healing, Heart of Sailing, Variety Children’s Charity, Sea Paddle of NYC, etc.) who host events for Autistic Children and their families. ***Many are free or reduced rate events.                               

Our state is rich with historic lighthouses and some of the country’s most beautiful beaches right at our back door. We’re also within driving distance of Boston, Baltimore, Philadelphia, NYC, the Thousand Islands, Poconos Mountains, Adirondack Mountains and even some provinces of Canada.

If you’re looking for ideas to do closer to home then you could do all sorts of stuff! Picnic in your own backyard, camp out at Grandma’s house, spend a rainy day at the local library, have a neighborhood block party or snuggle around a “camp fire” in your backyard and roast marshmallows. Try out a Yoga class for Special Needs kids, book a therapeutic horseback riding lesson, look for seashells and sea glass on the beach, fly a kite.

Many of my childhood, summer memories are of the simplest things. They are all about my being with my Parents, Grandparents, siblings, cousins, Aunts and Uncles. The love, innocence and pure joy of just having time to play and be a kid is what I hope to instill in both my children.

Friday, February 26, 2010

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

Remember riding the bus as a kid? An education could be had on
the bus in my hometown....especially because my parents tried
hard to shelter us. All of the bad words were learned on the bus
(well and while helping your dad do home improvement projects)
and even some of the birds and the bees stuff too.

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

Then it was time for the Sassy Kindergarten Princess to ride her
bus.  It's a shame the Transportation people didn't send us any
bus info until the week after school started. I had to drive her on
the first day and she was disappointed.  She has wanted to ride
the school bus since the first day it came to pick up her little
brother!!!  When I got to school they knew her bus assignment
and I said okay good please make sure she rides the bus home.
Then I worried what if she doesn't end up on the bus, what
if I'm not on time at the bus stop.  The mother worry kicked
in but it all worked out and she arrived safely....over an hour
after getting out of school but none the less arrived safely.

That first week of bus riding was memorable to say the least.
My daughter had another Kindergartener tell her to "shut up
B*tch" !!!!  Excuse me???  I tend to not get excited about little
stuff so when she came off the bus and tattled that a boy said a
bad word on the bus I said "ahhh just don't listen because you
know it's not okay to talk like that".  Well she must have been
especially upset about it (understandably so) because she
came back to me and brought it up again.  This was when she
told me the boy said it to her!!!  Well mommy mode kicked in
and I was kicking some butt and taking some names before
I even knew what hit me!!  The Director of Transportation,
Principal and bus driver had all been advised of the situation.

All I can say is we're glad to have that bus route safely behind
us now that we've  moved!!

Please become a follower of my exciting new decorating blog too.

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

Wednesday, September 16, 2009

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

The funny thing about swear words is that you're even happy
to hear "the bad ones" as my daughter calls them simply because
it's language when your child is Autistic. One friend tells of
going to school for her son's conference at school only to hear
her son likes to drop "the F bomb". Sadly, we were all excited
to hear it because he was talking!!!!

Will's bad word of choice has befuddled us because it's not one
of the words we use in our house. Now we're wondering where
his new love of the DAMN word has come from recently. He's
even using it appropriately. He dropped something down the
stairs & said oh damn. LOL

My son can't say his full name yet but he swears & we're thrilled.
I know my mom must be so proud right? When I was growing up
even the word FART was a swear word in our house and now they
have a whole series of kids books all about Walter the Farting Dog.
LOL You should have seen Nanny's face the first time she heard
Walter rip one on the Tag Reader!!!