A CHRISTMAS MIRACLE

Being a stylist by profession for a number of years afforded me the opportunity to have a myriad of conversations with some interesting characters.  I’ve listened to shop talk big and small, and engaged in quite a few lively banters myself.  I would stand behind my chair and listen to clients give the 411 on whatever life event was happening with them and offer my advice if I had any to give.  Often I was a leaning post for their cares and worries and much obliged to do so.  I always prided myself on having a different view on things and being truthful, honest, and unbiased.  Well…maybe a little biased.  I’m only human.

So this particular day was not unlike many other days when a longtime client and friend asked me for advice on New Year’s Eve activities.  Being removed from the salon to become a stay-at-home-mom has had its pros and cons.  Mostly pro because I can stem my focus to my daughter and her care but on a day like today, I sure missed being in the salon to find out what the happenings around town were.

“Why is it so expensive to go out on New Year’s Eve? And we don’t even DRINK!” she asked me.

“I have no idea but you’d best be ready to shell out a couple hundred dollars.” I replied.

The focus of our talk was centered around the holiday season: travel, families, activities. We had a wonderful discussion about the funny things that happen when families get together.  And then there was that question again, only with a twist,

“What do you want for Christmas?”

Without a second thought I replied, “Nothing.  As long as my baby is straight, I’m good.”

But in all actuality I wasn’t good.  I just lied.  I just told a bold-faced lie.  I just stood square-toed and told a bold-faced lie to my friend.  And I’m usually the truthful and honest and unbiased one.  Well…maybe a little biased.

You want to know what I want for Christmas?  I want to go on a DATE.

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I want to go on a real date with a real gentleman who brings me flowers in a box. I want to go on a date with a real gentleman who opens my door and is interested in what I have to say. I want to go to a restaurant that requires reservations and a dinner jacket.  I want to wear a dress that I have been holding in my closet for just such an occasion.  I want to wear those Gucci shoes that I have abandoned because at any moment I may have to sprint after my daughter.  I want to eat by soft light, sip a bold red, and order from the dessert tray.  But most of all I want to go on a date with two people: not me, him, and my daughter’s disability.

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Dating as a single parent of a child with Down syndrome is an auspicious and elusive animal.  Usually if I do get a chance to go out, we, and I did say ‘we’, are a party of four: me, him, my daughter, and Down syndrome. The restaurants are family or sports centered.  There are always televisions and chicken fingers.  I rarely enjoy my meal unencumbered because I’m so focused on her. It’s difficult to relax.  The disability always finds its way into the conversation.  Without a steady sitter it is not unusual that where I go, she goes.  That is to say, if it even gets that far.  Some just don’t think that they can handle the responsibility of being involved with a special needs parent.  In this instance I feel it is much better to know in the beginning than farther down the line.  I love my daughter and I see a little girl first but sadly there are many who see the disability…and then her.  That doesn’t make it any easier to try to date in a Insta-filter obsessed world that cannot see the beauty in our differences.

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So since I have no gentleman, no flowers in a box or reservations at Chet Somewhere, me and my munchkin will make our own dinner dates.  Party of Two.  Dressed to the nines. Just me and my little one.  She’s the best date anyway.  And that’s the honest, unbiased truth.  Well…maybe a little biased.  I’m only human.  🙂

If you liked this post, why not leave a message here, share this post, or join in the conversation on my FB page, www.facebook.com/countdowntok    I’d love to hear from you! 

For more stories like this one “Inclusion Is for the Included: A Collection of Stories from a Special Needs Mom,” available NOW at https://store9809015.ecwid.com/

Inclusion Is For The Included (Front Cover)

Inclusion Is for the Included: A Collection of Stories from a Special Needs Mom,” available NOW at https://store9809015.ecwid.com/

To order copies or schedule speaking engagements for your group, contact us: 

Inclusion Is for the Included: A Collection of Stories from a Special Needs Mom,” available NOW at https://store9809015.ecwid.com/                                                                                                                                                                                                                                                              If you liked this post, why not leave a message here, share this post, or join in the conversation on my FB page, www.facebook.com/countdowntok    I’d love to hear from you! 

A Gift for Christmas

I’ve eaten the turkey.  I’ve made the cakes.  I’ve laughed with family and friends.  My little one sat at the children’s table ALONE this year and things are looking rosy.  Maybe I should say showy. The holiday season is in full swing and schools will soon be out for the year’s end.

With only a few weeks left in the year there is an upbeat to the step of most of the people I encounter. I hear music in the air.  Someone on the radio is dreaming of a white Christmas.  I’ve never seen that color in December because right now it’s a whopping 80 degrees in Central Florida.  I should be happy but I have the worst anxiety I have had of any time this year.  A good friend just asked me…

“What are you getting your daughter for Christmas?”

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I could have passed out.  Right there.  Flat on the floor.

I’ve fielded this question three times already.  It started right before Thanksgiving. Then Black Friday.  Then Cyber Monday.  And here it rears its ugly head again for the piece de resistance. The coup de gras.  The 12th round knockout blow.

My heart is beating way too fast and I start to sweat.  I should have known that eventually I would have to answer that question but when I was finally asked I immediately froze. What was I going to say?  There are only T-minus a few days left and I have known this day was coming for twelve months.  Yet suddenly I was in the throws of an adult meltdown with a friend that I love dearly.

So I did what any other quick thinking parent would do.

I said, “Huh?”

Being the parent of a child with special needs has given me plenty of practice with being quick on my feet.  I can put a condescending, nosy stranger in their place in the blink of an eye and I can handle doctors, therapists, insurance reps, and specialists with the greatest of ease.  I am a champion for my little one and I’ve never met a challenge that I didn’t attack with swiftness and ferocity.  I am an advocates’ advocate.  When Ghostbusters needs someone to call, they call ME.

But right now I can’t think of a single solitary thing to say.

Seven years ago when I was still running my business and being that jet-setting upwardly mobile go-getter that I was seems like an eternity ago.  Since becoming a special needs parent things took a drastic turn in a direction I knew nothing of navigating.  Whereas in my previous life by this time of the year I would have all my gifts bought and wrapped, bills paid, and bags packed because I would be headed to somewhere other than here and loving every minute of it.  What a difference a few years make.

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Now don’t for a minute think that I’m pining for those days.  My life now is richer even though I am not.  The value of the time spent being a stay-at-home-mom cannot be measured and it shows in the progress my daughter has made in each stride of her life.  She is a well-rounded, headstrong and confident little lady who has taught me more in these brief seven years than I have learned in my entire life.  Yet changing careers mid-life to accommodate a daughter who needed more care than most other children I knew at her age was a daunting and scary undertaking.  The anxiety of having all the I’s dotted and T’s crossed is a challenge most months and the holidays pose even more of a challenge with the added effects of gifts, travel, parties and the like thrown into the mix.  And furthermore the year’s end brings a start to deductibles and spring activity fees and those other things that go bump in the day.  I have to be smart about my coins and not let the idea of a day overshadow the needs of the month.

My friend started talking about some deals that she had found online and didn’t even realize that I hadn’t answered her.  “I’m going to send them to your inbox.” she said.

“Oh. Okay then.” I replied.

My heart had returned to a semi-normal pre-question beat.  I didn’t need to breath in a bag anymore and I had survived another round of holiday anxiety.  I had almost survived the full conversation and then she said…

“Are you going to the Christmas party?”

So I did what any other quick thinking parent would do.

I said, “Huh?”

 

 

If you liked this post, why not leave a message here, share this post, or join in the conversation on my FB page, www.facebook.com/countdowntok    I’d love to hear from you! 

For more stories like this one “Inclusion Is for the Included: A Collection of Stories from a Special Needs Mom,” available NOW at https://store9809015.ecwid.com/

Inclusion Is For The Included (Front Cover)

Inclusion Is for the Included: A Collection of Stories from a Special Needs Mom,” available NOW at https://store9809015.ecwid.com/

To order copies or schedule speaking engagements for your group, contact us: 

Inclusion Is for the Included: A Collection of Stories from a Special Needs Mom,” available NOW at https://store9809015.ecwid.com/                                                                                                                                                                                                                                                              If you liked this post, why not leave a message here, share this post, or join in the conversation on my FB page, www.facebook.com/countdowntok    I’d love to hear from you! 

No More Debates

In between piddling and mommying and doing the busy things that mothers do I hear a familiar sound coming from the living room.  My heart skips a beat.  My daughter is crying.  But this is not a wimper type of cry.  This is an all-out “Mom get here NOW” kind of cry.

So Mom gets there. NOW.

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I find her standing in the middle of the living room floor with tears coming down her chubby-cheeked face.  She turns toward me as I approach her. The tears are flowing in bucket drops and I can feel the hurt coming from her little body.  I lean down and reach out to her as she walks toward me.  As her arms reach my neck she grabs me and holds on tight.  I feel the wetness of her face as she continues to sob.

I take a mental inventory of the room with my Mom-DAR on full alert.  Her unfinished snack is still on the tray.  She’s already had a bath. She had just gone to the bathroom. The iPad was fully charged and had her favorite movie in view.  It was close to bedtime and I had been doing those last minute before bed tasks  without realizing what was going on in the next room. What could be the problem?

I moved her head from my shoulder and looked in her tear-soaked eyes. “What’s wrong, Punkin?” I ask.

She looked back and then turned her face toward the television.  Lifting her left hand she pointed at the flat screen, all the while gripping my neck with vice-like strength.  She can’t put her feelings into words but I know full well what the problem is.

The third Presidential debate is on.  I look at the monitor and the candidates are arguing. AGAIN. My daughter turns away and is crying. AGAIN.  The bickering has started and this negativity has filled my living room. AGAIN.  She picks up on it and it has made her cry.

With all of this bickering and unfounded squabble I felt like I was sitting in the midst of yet another contentious IEP meeting.  I just had a flashback. This is making me angry.

“Do you like these people? ” I asked her.  She shook her head NO, with her head still buried in my neck.

I get up to change the channel.  Anything will work right now.  I abandoned network television to try my luck with the Roku.  I find a comedy and placed the remote back on the counter.  I’m upset with myself because in my haste to ready her for bed I failed to set the atmosphere for a calm, smooth transition.  It was a simple oversight but I can’t help but feel a certain kind of way because these people that I do not know are making my daughter cry and I can’t do a thing about it.  She has a discerning spirit about her and though she can’t verbalize  these complexities I understand completely.

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I wiped her sweet little face and took her to her room.  I tucked her in and played our little bedtime tickle game.  I kissed her on her cheek and said, “Good Night”.  Her face is dry. Crisis averted.  Mom for the win.

I hate feeling like a prisoner in my own living room because I can’t even watch television without seeing an attack ad.  It’s difficult to form a learned opinion about issues without feeling caught up in a whirlwind of hate. I try to vet the shows I let my daughter watch but even the commercials bombard us with negativity.  We encounter enough of it as a special needs family and I should be able to find solace in my own home.  I feel like our family is caught in the crossfire of a voter war.

Fast forward three weeks.  There are no more debates.  The attack ads are still there but this mom isn’t having it.  I’m not a fan of perpetuating a hostile home environment with slander and innuendo.  Since that day I have been the commercial police with the remote on my hip or we simply watch On Demand because there are no ads. We have ramped up the homeschooling schedule and eliminated even more of the background noise.  I wish that by early voting you could be exempt from seeing any more ads.  But until then I’m the sheriff and I’ll battle at high noon for my little deputy.

Remotes blazin’.

If you liked this post, why not leave a message here, share this post, or join in the conversation on my FB page, www.facebook.com/countdowntok    I’d love to hear from you! 

 

For more stories like this one “Inclusion Is for the Included: A Collection of Stories from a Special Needs Mom,” available NOW at https://store9809015.ecwid.com/

Inclusion Is For The Included (Front Cover)

Inclusion Is for the Included: A Collection of Stories from a Special Needs Mom,” available NOW at https://store9809015.ecwid.com/

To order copies or schedule speaking engagements for your group, contact us: 

Inclusion Is for the Included: A Collection of Stories from a Special Needs Mom,” available NOW at https://store9809015.ecwid.com/                                                                                                                                                                                                                                                              If you liked this post, why not leave a message here, share this post, or join in the conversation on my FB page, www.facebook.com/countdowntok    I’d love to hear from you! 

 

Enjoy a sensory friendly KidsTown at OSC

The Love Bridge, a heart-filled rainbow walkway which guides guests from the parking garage into the main building of the Orlando Science Center, is the first stop in welcoming special needs families to the OSC‘s newest endeavor:  KidsTown, an all accessible, all inclusive, interactive play area for children. Families with children who have special needs need not worry that there will not be activities for their loved ones to engage in or pricing that a family cannot afford.  The OSC  operates under the premise of ‘Science for All‘ and KidsTown does not disappoint.

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KidsTown at the Orlando Science Center

There are several women chatting and waiting at the end of The Love Bridge, a heart-filled rainbow walkway which guides guests from the parking garage into the main building of the Orlando Science Center.  There are a few children there as well playing in eager anticipation to find out what is just beyond the black accordion doors to the left of the ticket counter.  A few introductions later and we find that we all have something in common.  We have been invited for a sneak peek into the OSC‘s newest endeavor:  KidsTown, an all accessible interactive play area for children.

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A Change In Season

For as long as I can remember, I’ve had an exceptional memory.  At times photographic and at times triggered by sights or sounds, but nonetheless exceptional.   This would prove to be a gift at times, but other instances would manifest a deleterious rendering – a Trojan horse which invades my conscious under the guise of a gift and unleashes a cascade of heartache and despair.

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An excerpt from our first published book, “Inclusion Is for the Included: A Collection of Stories from a Special Needs Mom,” available NOW at https://store9809015.ecwid.com/

Inclusion Is For The Included (Front Cover)

Inclusion Is for the Included: A Collection of Stories from a Special Needs Mom,” available NOW at https://store9809015.ecwid.com/

To order copies or schedule speaking engagements for your group, contact us:

Inclusion Is for the Included: A Collection of Stories from a Special Needs Mom,” available NOW at https://store9809015.ecwid.com/

If you liked this post, why not leave a message here, share this post, or join in the conversation on my FB page, www.facebook.com/countdowntok    I’d love to hear from you! 

Train ‘Em Up

Today I got a reply.  That was Wednesday.  Today is Monday.  And all I want to do is tend my garden and not think about the school because today she is at home with me.  No acting under duress. No pull outs or reprimands.  Today she is with me.  And I just want to tend my garden.

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An excerpt from “Inclusion is for the Included: A Collection of Stories from a Special Needs Mom,” available NOW at https://store9809015.ecwid.com/

Inclusion Is For The Included (Front Cover)

Inclusion is for the Included: A Collection of Stories from a Special Needs Mom,” available NOW at https://store9809015.ecwid.com/

To order copies for your group or schedule speaking engagements, contact us:

 

Inclusion Is for the Included: A Collection of Stories from a Special Needs Mom,” available NOW at https://store9809015.ecwid.com/

If you liked this post, why not leave a message here, share this post, or join in the conversation on my FB page, www.facebook.com/countdowntok    I’d love to hear from you! 

 

 

Pink and Yellow and Blue

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But this time it’s not about pink. October is Down Syndrome Awareness Month. It’s October again.  I think I’ll hold on to this new life and live it up.
An excerpt from our first published book, “Inclusion Is for the Included: A Collection of Stories from a Special Needs Mom,” available NOW at https://store9809015.ecwid.com/

Inclusion Is For The Included (Front Cover)

 “Inclusion Is for the Included: A Collection of Stories from a Special Needs Mom,” available NOW at https://store9809015.ecwid.com/
Join Team Purple Pyramid for Step Up Orlando this October 2016.  You can donate to the Down Syndrome Association of Central FL at http://www.stepuporlando.kintera.org/purplepyramid                                                                                                
To order copies or schedule speaking engagements for your group, contact us: 

Inclusion Is for the Included: A Collection of Stories from a Special Needs Mom,” available NOW at https://store9809015.ecwid.com/                                                                                                                                                                                                                                                                                                                                                                    If you liked this post, why not leave a message here, share this post, or join in the conversation on my FB page, www.facebook.com/countdowntok    I’d love to hear from you! 

An Open Letter to an Expectant Special Needs Mom

ENJOY THE RIDE.  I sat next to you again the next day in one of the workshops.  You seemed tired.  Get ready.  It’s just beginning.  Just know that this is the best tired you will ever feel.  You’ll be great.

An excerpt from our first published book, “Inclusion Is for the Included: A Collection of Stories from a Special Needs Mom,” available NOW at https://store9809015.ecwid.com/

Inclusion Is For The Included (Front Cover)

Inclusion Is for the Included: A Collection of Stories from a Special Needs Mom,” available NOW at https://store9809015.ecwid.com/

 

To order copies or schedule speaking engagements for your group, contact us: 

Inclusion Is for the Included: A Collection of Stories from a Special Needs Mom,” available NOW at https://store9809015.ecwid.com/                                                                                                                                                                                                                                                              If you liked this post, why not leave a message here, share this post, or join in the conversation on my FB page, www.facebook.com/countdowntok    I’d love to hear from you!