Category Archives: Down Syndrome

Picture this…

It’s that time of year when our e-mail inboxes get slammed with spam from Shutterfly and Snapfish advertising discounts on holiday card orders.  All the cards they have in their ad displays a beautiful portrait of a family interacting so naturally hanging out in a field or by the beach.  Everyone is smiling and laughing.  You can almost feel their happiness.  I always think, “I could NEVER get a picture of my kids doing that”..  Worse, I avoid that formal picture because I know that Boo will have such trouble focusing on the photographer. She might look vacant or checked-out. 

But then I met Zach’s mom, Laura. Her reply? Well, of course you can!  I’d like to introduce you to Laura, an awesome mom and someone who taught me to relax in the moment of trying to get that ‘typical’ family portrait. 

 
And hey, my first ever guest posting on my blog!

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Photo Credit – Trace Melody

I’m a mom-tographer based on the Cape.  Every year around the holidays my schedule packs up.  Parents contact me sounding anxious to schedule a holiday session with their kids but apprehensive.  The conversation always starts out with the same phrase “I just want a few good pics of my kids.” And they hope to, “Maybe get a nice one of all of us”.  Then, their session rolls around and we rock it out.  I may show the parents one or two little quick glimpses on the back of my camera but I like to save the best for when they see their gallery. 

The gratitude for not only beautiful portraits, but also for a fun experience is what pours out of these families.  I love giving that experience to people.  Giving them a visual representation of not just what their family looks like, but WHO they are together.  Their connection and how they interact with one another.  Capturing their children’s reactions to their Daddy’s funny story-telling voice.  It’s the art of the family I always strive to capture.  And it’s not always easy.  Those amazing smiles usually come after some protest and maybe a few tears.  But I keep my patience with a few simple tricks that you can use if you’re going try and take a holiday portrait yourself! 

   Get outside!  Kids are naturally more relaxed outdoors.  The light is gorgeous outside and you’re almost guaranteed a few keepers if you shoot outside.  Preferably right around the 3pm mark. 

   Put their back to the sun!  People have this common misconception that they need to light up their kids’ faces by having them face the sun.  Not true.  Put their back to the sun and you’ll have some gorgeous results. 

 

 
  Turn off your flash!  Especially when shooting outside.  Flash is unflattering and gets rid of some very interesting shadows on the face.  Shadows show depth and make a portrait more dimensional.  Turn off flash.  You’ll love the results.   

  Take the pressure off.  Try to steer clear of phrases like, “Ok!  Let’s go take a picture now!!  Everyone look at me and smile!!  If you don’t smile no candy!!”  These phrases put pressure on the kids and will almost always produce less-than-desirable results.  Instead, try taking your children to a park or an unfamiliar field.  When your kids are involved in exploring, get low on their level and talk to them.  Talk to them about their favorite character from Sophia: The First, or Handy Manny.  Have your camera ready and when they glance up at you, press the shutter.  Their face will be natural and relaxed.  Even more so if you get them to laugh at you singing!  A much better smile will happen if it happens naturally rather than forcing it by saying “Cheeeeeese”. 

 

 
  If you have sensory sensitive kiddos, be aware of their triggers and head them off at the pass.  If they don’t like grass, bring a throw blanket to toss on the grass.  Or a low stool for them to sit on.  The problem I have when I try to photograph my own son (who has classic Autism) is that he sees me every day.  I’m not interesting to him.  So, I have to make silly airplane noises and wave my hands in the air to get him to notice me.  But once he sees me and thinks, “Hey, mommy is doing something pretty silly there”. That is when I’ve got him.  I can capture his laughs in-between my silly acts. 
 

And if all of this still intimidates you, you could always invest in a professional to help you capture your families.  Special needs families are personally a favorite of mine to capture because I KNOW how I longed for someone to capture our interactions as a family together.  I needed to freeze the period in time where my sensory-seeking child would press his face into mine so hard, he’d shake.  And his infectious giggle when his daddy would make him fly up in the air.  Those moments for me are priceless.  And when I can take a family who is convinced that we’ll never get a good shot of their child because they’re fixated on the car door, that’s a challenge for me and I adore the parent’s reactions when I show them the incredible results. 

 

Laura Fiorillo is the owner of Family Tree Photography located in Sandwich, MA.   Contact familytreephotography@hotmail.com

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I’d like to thank Laura and the parents who allowed us to share their photos to demonstrate how our children are just so beautiful. While we never got that formal family photo, our pictures are unique just like our family. I cannot thank Laura enough for prompting me to do the photo shoot. Remember I once explained how Boo does the full body hug? The one that just pours out her love and enjoyment? Laura captured that moment which is so more spectacular than a staged formal shot. 


 

Would you CARE?

It’s the last day of the 31 for 21 Challenge. I didn’t really make the goal of blogging everyday. However I was beyond happy to participate. As this is the last day I was thinking about Robert Saylor. How this young man with Down Syndrome lost his life because those who are there to protect were not trained to work with those whom have special needs.

Because while you might be aware of Down Syndrome you might not really understand it.


Then last week I read an article about the C.A.R.E. program. C.A.R.E. stands for Children and Residents Encounter program. It is the brainchild of the Colerain, OH police department. To my understanding, this program is designed to educate emergency personnel to those within their community with special needs. Be it Alzheimer’s, autism, mental health issues or behavioral issues.

Colerain has an estimated 1 out of every 150 residents on the autism spectrum. Chances are pretty great that at one point the emergency personnel will come into contact with a person who has special needs.

C.A.R.E. is a program where the family gives the emergency personnel information regarding the child’s (or adult) health and mental issues. The parent provides detailed information: are they on a monitor, do they have anger issues, what medication are they on, do they elope, what if anything do the police need to know if they are responding to your home or anyplace in town where that person might be in need of assistance.

Just think, if the police had known about Robert he might have lived. They would have been aware of his triggers, known he had Down Syndrome and been trained to deal with a person who has diminished capacity.

Yes, apologies to all the parents I just offended, but our children have diminished capacity and do not understand that  their behavior has unintended consequences. Sadly, neither are the first responders always educated.

One argument against C.A.R.E. is that we are giving up our children’s privacy. Do you really want your neighbor who listens to the police scanner (my MIL) know that your child is suffering from (insert your child’s diagnosis here).  Heck, I do it everyday here on this blog! But I see their point. Some parents are not “out” they don’t want the neighborhood to know that their child is autistic or bipolar or clinically depressed.

But in an emergency does privacy matter? If your child has suicidal tendencies wouldn’t you want the first responders to know? If your child is prone to throwing lamps in anger wouldn’t you want the first responders not to respond with force but with patience and kindness? If you child is deaf and does not hear the police say stop as they run in fear would you like them not to use force?

If you were Robert’s mom wouldn’t you have wanted the police to know that her child didn’t understand why he couldn’t just rewatch the movie? While I have never met Ms. Saylor I can imagine her anguish.

Upon learning about the C.A.R.E. program, I reached out to our local police and fire departments. I asked them about signing onto the program, or a similar idea. I explained how the Ohio police department minimized training costs and related expenses. They replied that this was one of their long-term goals.

Which I appreciate.

But I want more. I don’t want a goal I want a program. I want our police and fire to have a card on Boo. I want them to know her name, what she looks like and how to react should they encounter her during one of her eloping episodes.

Screw her privacy. Her life is more important.

To be preachy, so should your child’s. Forget their privacy or your embarrassment. Contact your local police and fire departments. Tell them about C.A.R.E. or another program that will protect everyone. If that doesn’t work, tell them about your child! Tell them you have a child in your home that has special needs and they NEED to have this information.

Think of Izzy and her mom, whom the area hospital knew and still couldn’t protect.

Think of your child and their temper tantrums. When they are out of control and you are doing the best you can but the neighbors call the cops to protect you.

Think of your child who climbs or wanders and the new neighbors do not understand that your daughter is autistic and does not realize they cannot swim in any pool they come across.

Think of your son who is manic depressive and might encounter emergency personnel during one of his psychotic breaks.

Truthfully, the neighbors and police and EMS are not wrong. When faced with an out of control person or a child that looks much older than they are developmentally, they have no other thought than to protect those in control. They will try to reason or restrain with compassion. But in fear for themselves and those around them they will also respond with force.

It is not anyone’s fault. Not your neighbor’s for calling the police, not the police for seeing an out of control person and trying to restrain them, not your child’s fault for having a disability and not your fault either. Ultimately we need to protect our children and those they come into contact. I think C.A.R.E. is a great start.

Think of Robert and know that could be your child.

Screw privacy and think protection.
 In Robert’s Memory and in Respect for a mother’s grief I end this month of Down Syndrome awareness in their honor.

Thanks

Yesterday was a crap day. For me. Not for Boo though. I wanted to let everyone know that not only did she survive the field trip she enjoyed herself. According to David she not only touched a pumpkin but plucked an apple out of a tree!

I know I wasn’t alone yesterday in my meltdown. Other parents experienced the same emotions I did. They just didn’t spew to the entire world. But I am glad I did. I almost did not post yesterday, fearful that I would offend Boo’s teachers and therapists. Fearful that I would look like an idiot when David took her and Boo did not melt down. Fearful that Boo would melt down and I wouldn’t be there to hold her in my arms.

I want to thank each and every one of you though, for supporting my meltdown with texts, e-mails and comments. I cannot tell you what it meant that you understood. Or if you didn’t understand you empathized.  A friend put it so well, this was a case of mommy guilt at it’s worse. Something we all go through during this crazy period of our life called parenthood.

Since parenthood is going to last for the rest of my life I know that there will be other moments when Mommy Guilt overwhelms me. I always thought Catholic guilt was tough, man I knew nothing before children!!

Including how I never knew that parenting was a team sport. So, thanks to each and every one of you who are on my team.

 
 


I collect you…NOT

Are you a collector? I mean, serious, as in will ravage any antique/yard/estate/shop sale to obtain some knick-knack? Allie has collections. She has collections of Barbies, Horses (thanks Auntie K), sea glass and Nutcrackers (thanks, mom).

And now there is that freaking rainbow loom. Guess how many bracelet collections she has?

David doesn’t really have collections. He is more of a pack rat. The man has a t-shirt from 1996 (He is wearing it now) and even one from 1983 (REO Speedwagon)–worn last weekend.

Boo has recently started a sticker collection. She doesn’t take the stickers off the backing, but she walks around with them. I blame her Speech therapist.

Me? I don’t collect so much. Don’t get me wrong, I have knick-knacks galore. But I didn’t buy any of them.  I like them, they are unique. Like the baking elves, Williamsburg signs, Cape Cod signs, Carolers (now only out at Christmas) and other what-nots.

I cannot believe I just said what-not.

The collection, though, I am most proud of is my friends. I have kind of an eclectic group. One I am meeting this weekend (woo hoo) for the first time in real life and others I have met via the blog. But also those close to home. The ones that I can just drop by and have a margarita with or a fine glass of wine.

No I do not collect wine. It really doesn’t stay around long enough to collect.

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What do you collect? And also by

Running for more than a nice butt

One of the side benefits of running is that you get to raise money for worthy causes. I sign up for 5k’s every month so I don’t start slacking on my goals. But I refuse to sign up for a race just because. It has to be for a greater good. We have done one for Crohns disease(doing it next year with Kate!) and recently did one for Childhood Cancer. This weekend I have guilted Kate in joining me for the High-Five Mullet race that supports mental health services.

The upside? I get to meet Kate, for real in person.
The downside? She has to run a 5k. Okay, she can walk I’ll never tell

Oh, did I mention there was free beer after the race? Yup, David will be running too!

And while I am super proud of us for running a 5k I am in awe of those who not only run farther but do it without needing an ambulance afterwards. In honor of Down Syndrome month, Michelle’s husband ran in the Air Force Marathon. He is doing it for his beautiful daughter Kayla and others like her. Her family is trying to not only raise awareness but support more research for Down Syndrome. You can read more about their story here and if you have a few dollars to spare on a good cause, please consider sponsoring Mike’s team.

Who knows, maybe next year Kate and I will be ready for a half-marathon!

Six questions with Sylvia

Last week I was not chosen for Blogger Idol. Allie was not surprised.  And I quote: Mom you didn’t try to sign did you?

Today is the first day of Down Syndrome Awareness month and the first day of the 31 for 21 Challenge hosted by my friend Michelle. While Boo does not have Down Syndrome, she has plenty of friends who do. For those friends I will be participating in the challenge once again. Or trying to, at least!

 

What a great way to start the challenge than by answering questions from my friend Sylvia? You can find her at Faithful Mom of 9 (yup, NINE). She tagged me in a game of six questions.

1. Is this how I imagined my life to be? Of course, every little girl imagines that she will be over 40, not living in a castle and married to a guy who thinks nothing of plucking a bird he just shot in the kitchen sink. Ha! In all seriousness, no. This is not the life I imagined at all.

But it is so much better than I could have dreamed. I have a guy, that while he does pluck birds in my sink he also attends the majority of Boo’s therapy appointments and is a hands-on dad. I have a daughter who is a wise-ass but also the most empathetic child I have ever met. I have Boo, who has taught me more about the world around me than all the social studies classes I took in school.

I might not have prince charming or live in a fantasy land. But life is pretty good.

3.What’s your drink of choice when out with girlfriends? Hmmm…let me think 🙂

5.Name something you’ve learned about yourself that has surprised you. I am not quite the wallflower I was in high school. I am more confident that I ever imagined I would be, willing to take risks and a stand for what I believe in.

7. What do I love about myself? That I made some pretty great kids. They are not perfect, but they are mine.

8. If money were no question, I’d purchase…a maid. Seriously, just to clean the bathrooms and the floors. Heck, who am I kidding. If money was no object I would hire a  housekeeper like Mrs. Garrett. They would cook, grocery shop and clean whatever mess David made in the kitchen with those damn birds.

9. What’s your biggest struggle in life? Finding enough time in the day for everything I sign myself up for!

Thank you so much Sylvia for tagging me. In turn I tag:

Kate at http://www.anothercleanslate.com/

K at Transcending CP

Emily at Oh Boy Mom!

Here were the rules:

If you choose to participate please pick six of the following questions to answer!
1. Is this how you imagined your life would be?
2. Name one good deed you did that went unseen.
3. What’s your drink of choice when out with girlfriends?
4. How did your blog come about?
5. Name something you’ve learned about yourself that has surprised you.
6. What hobbies do you have that you don’t mention on your blog?
7. What do you love about yourself?
8. If money were no question, I’d purchase…
9. What’s your biggest struggle in life
?

Please be sure to stop by both Michelle’s and Sylvia’s blogs. You will not be disappointed.



The Journey

Yesterday while waiting for Boo in therapy there was a little boy who was walking around, in his own world and knocking on the walls. He was beautiful. It occurred to me at that exact moment that if I didn’t have Boo in my life I might not have noticed how absolutely beautiful.

I would have looked away.

I would have thought to myself what is wrong with that boy?

I would think, yuck look at that drool.

I would not have spoken to his mom, thinking I was sparing her embarrassment.

I would have been wrong and heartless and selfish. Because I would have thought to myself thank God Allie is ‘normal’.

Thankfully, I have Boo.

So I saw the beauty in the way the little boy comforted himself by knocking on the wall. I looked into his eyes and saw the light shining inside. I recognized his drool and realized it was because he was concentrating so hard. I spoke to his mom, asked how old he was, what school did he go to.

I made small talk.

Not about her son being in different, but how he was the same.

In that moment I was thankful that Boo had made me a mom with special needs.

I remember when I was pregnant and told that due to my “advanced” age my baby was at higher risk for birth defects (hate that word now), Down syndrome and a host of other scary things.

I opted for just the blood test and told God I could handle Down syndrome. But nothing scarier. Why Down syndrome? Not because I knew a lot of about it, but because children and adults with Down syndrome were the least scariest to me. I saw them in the playground, the market, in my life. “It” seemed manageable.

By the way, I realize how arrogant and condescending that sounds. Bear with me.

When the geriatric tests came back negative, I was relieved and moved on with my pregnancy. Then Boo was born and I learned that it doesn’t matter what your child was born with, a trip to the NICU is beyond scary. At that time I thought it was the scariest thing I would ever go through. Boy was I wrong.

It is also enlightening.

Being Boo’s mom has opened my eyes and my heart. I am a better person because I am a card carrying citizen of Our Land. When I see a child (or adult) not acting typical, I do not jump to the conclusion that the child needs discipline. When I see a parent at the end of their rope in the grocery store, I reach out to them.
I learned that by never hiding Boo’s light I am opening our family and friend’s hearts to others in the community. Most of them have now banished the word retard. They are teaching their children to do the same.

My friendships are now more meaningful and important. I have become more vocal and more of an advocate. I have gained friends that I would never have come into contact. I have become more outgoing and outspoken. I certainly wouldn’t have begun blogging. Blogging opened up a whole new world of laughter and support.

All because of Boo.

Do I have moments when I wish that Boo had been born “typical” or with what I thought I could handle? Sometimes, but only because then I would have a tour guide who would know what path to take.

Yet I wouldn’t trade this undiagnosed journey for the world.

 

Boo and Yoga

We are incredibly lucky to have found Jessica, Boo’s Yogi. I have written before about Yoga for the Special Child. But for a quick update for those new to this blog, we started Yoga with Jessica about a nine months ago. It was truly an act of Fate that we met, her daughter is a ‘peer’ classmate in Boo’s integrated preschool.

Jessica is an absolute treasure. On top of running a husband and a house with five children, she is also a co-founder of Heartbeats for Down Syndrome. In her “spare” time she teaches yoga for children like Boo. She does both private (for children like Boo who would not be able to concentrate) and small-group glasses for young children.

I have seen Jessica teach a group class with a mix of typical and not-so-typical children. But, biased here, I like the solo lessons. Boo cannot follow directions. Most times Jessica has to move Boo into the position. What we have found is if Jessica’s older daughter does the lesson with Boo the results are beyond terrific.

I started Boo in Yoga for the Special Child to help with Boo’s frustration at being non-verbal. That didn’t happen. What did happen is a significant change in Boo’s bowel issues, a language explosion and a willingness to do the Yoga on her own.

Today in hydrotherapy, her PT was concerned about the toe-walking and a tendency for her right leg to turn inward. To demonstrate she asked Boo to stand on one leg. Boo didn’t understand. But when we said, Boo tree pose…viola! Boo stood on one leg in an almost perfect tree pose.

Hey huge milestone there!

It is difficult, between Jessica’s commitments and my own life we tend to interfere with Boo’s Yoga schedule. One of my goals (and Jessica’s) is to make her lessons more routine. I have noticed, when I put the extra time in (between homework, life and everything else) Yoga for the Special Child works.

Honestly, we should probably go 3-4 times a week. But between work, school, therapies and life it just isn’t possible.

But Yoga isn’t for just the “Special Child”. Allie loves Yoga. Because I am not a Yogi nor one who can mediate I am not the best mentor for the girls. But before bedtime when we put Boo through her poses, Allie joins in.

And we all relax, if just for a moment.

To learn more about Jessica’s story please visit Heartbeats For Down Syndrome or the National Down Syndrome Society.


This post was inspired by Rachel Tao of Poop who shared a story of childhood yoga and then recommended I post Boo’s experience. Rachel is one of the calmest bloggers I have “met”. She always sees the message in the little things. Something I need to learn how to do. Thanks, Rachel!

To find a Yoga program for the Special Child look here (I really recommend finding someone on this site and not just anyone.) for Yoga just for the child I found this site but cannot totally endorse it since I found Jessica simply by putting out a cry on Facebook.

Namaste!