Sensitive Santa Programs Are A Breath Of Fresh Air For Special Needs Parents

The holidays are just around the corner. Menu’s are being planned, family is coming to town and gifts are being purchased. If you have children, then I am sure planning a visit to Santa is in the works too! For some, a visit to the jolly-old-elf is no biggie, while for others it can be overwhelming. This is especially true for those with special needs children. The lines, the noise and the crowds are sometimes just to intense for a sensory kiddo, just like my Landon.  Heck, I don’t even like lines, waiting and loud noises…

If you share my same sentiments, then you are in luck!   Starting this Sunday November 22nd, over 120 Simon malls will be offering the Caring Santa Program. This program is  made possible thanks to Autism Speaks and their association between Noeer Corporation and AbilityPath. This program allows families of children with special needs to enjoy their experience with Santa in a more controlled and welcoming environment, usually before the mall opens. As a mom to a sensational kid, I am so thankful to these companies for providing this program for the special needs community.
If you think this event would be something that would benefit you and your family, I urge you to register for the Caring Santa program at your local Simon mall. Most time slots will be 2 hours before the mall opens to the public on November 22nd or December 6th. For my local friends, Emerald Square Mall will be offering their Caring Santa program on December 6th from 830-1030am, with some time slots already filling up. It is FREE to register- and you must have a reservation to take part in this program.

To learn more abut the Caring Santa Program and to see other malls participating click here. It was only about a few years ago that I found out abut this amazing program and boy would it have came in handy during Landon’s early visits with Santa! If you can’t find a sensory-friendly event near you, I urge you to contact your local mall to request one for next year. You never know if your request will be heard unless you try!

Merry Holidays

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Landon, Christmas 2008

Living with Sensory Processing Disorder

My world is sensational, thanks to a 7-year-old boy named Landon. Some day’s loud noises are our friend and then the next day they aren’t. On most days sunlight is the enemy, food is surely our foe and bedtime is never quick or painless. Anxiety leads to sadness and sadness leads to frustration and frustration leads to anger. You see, my Landon has Sensory Processing Disorder, better known as SPD. Sensory Processing Disorder is a condition that exists when sensory signals don’t get organized into appropriate responses. A. Jean Ayres, PhD said it best when she referred to SPD as a neurological “traffic jam” in the brain.

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SPD can affect our senses such as vision, audition, tactile, olfactory, taste, proprioception and the vestibular system. It can affect one sense or multiple senses at once. All of Landon’s senses are affected by SPD. While some days only certain things act as a trigger for him, he does have days where he has a full blown “sensory day”. Call it mother’s intuition, but I can tell if he is going to have a “sensory day” within 1 hour of him being awake.

During Landon’s test for developmental delays and learning disabilities, it was discovered that Landon was in fact gifted. While some people are not convinced that there is a link between gifted minds and SPD, there is more research being complied on this topic everyday to say otherwise. Paula Jarrad, MS, OTR conducted a research study in hopes to bring awareness to the prevalence of SPD in gifted children.

 “The ‘double-edged sword’ of giftedness often bestows, among other features, a global heightened awareness to sensory stimulation, an endowment of amplified mental processing speed and attention capacity, and unusual challenges with frustration, pain, noise, and emotional hypersensitivity,” Jarrard learned from her review. “As many as one-third of gifted children may exhibit sensory processing disorder features, significantly impacting quality of life.”

I find her results to be very accurate in how it depicts life with my sensational kid.

Preliminary research states that SPD is often inherited, which means it is coded into the child’s genetic makeup. However, as in many developmental and behavioral disorders, genetic factors and environmental factors can affect the child. Only with more research will doctors be able to identify the role that each factor plays. While navigating this path with Landon, I uncovered that I also have SPD. At first, I was sad to think I might have passed this onto him, but Landon is who he was meant to be, and he, nor I will ever apologize for being “sensational”.

In order to better understand if a child is having sensory issues, try using the “Sensory Checklist” here.  This checklist is usually broken into age categories.  After reading the entire checklist, you might think that most kids exhibit these characteristics and it is not a big deal. However, it is when the symptoms of these characteristics become severe enough to affect normal functioning and disrupt everyday life that it becomes a challenge. Behavioral therapy, play therapy and social skills groups are just some of the ways you can treat SPD. You must find the right balance that works for you and your sensational kid.

My child has been labeled fussy as baby, grouchy as a toddler and now anxious as a 7 year old. I tear these labels off. Labels are for jars, not for my son. Having SPD doesn’t define us. Instead it shapes us. We might move to the right while others move left. But in the end, we are all on the same journey. We want to learn, grow, socialize, love and explore just like the rest of you. We just have a harder time navigating through it all. We do things a little differently, as does everyone in some way, shape or form. And last time I checked, being different makes us unique. The world is better place when we are free to be who we were meant to be.

A fully edited and more descriptive version of this story has been published in RI Parent Magazine, October issue.  It was chosen as the cover story and features my little boy! 

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Namaste ~ Joy

Wordless Wednesday- School Picture

School Pictures can go terribly wrong. Especially when you have a moody 6 year old who likes to get what he wants at all costs. For example, Landon was less than thrilled with the background I chose. He wanted the waterfall & trees. So- he let me (and the photographer) know that he wasn’t going to cooperate. If this picture isn’t a giant F@%K You Mom, I don’t know what is.

Showcasing for your enjoyment- Landon’s Kindergarten Picture 2014

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Valentine’s Craft that is good for your Heart

It’s Valentines day! YAY! Usually I am the mom who goes out the night before to my local 24 hour CVS and picks up a box of pre-maid valentines. For other holidays I am more open to spending time making something crafty for the kids in Landon’s class. But, for some reason, I always feel like the Valentines that he gets, we just toss. So, wouldn’t others do the same? Why waste all that time on something?

Maybe it’s just me, being cynical or a pessimist. I am known to be a little of both. Any-who, this year I decided to make something. I wanted to make a Valentine craft that is good for your heart! But not just anything. I wanted to make something I felt at least half of his class would actually use.He has 21 kids in his class, so my odds were good I thought. With the emphasis on reading & writing in Kindergarten this year, I thought what would be a better thing to make then BOOKMARKS! The kids can feel “grown-up” with  their very own and it promotes the LOVE OF READING! Which by the way, I am very keen on.

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Here  is our attempt at Valentine’s Crafts!  It’s pretty self-explanatory. Landon had a blast helping and was so excited to give them to all his friends! He even left the other side of the bookmark blank for the kids to decorate with their own stickers or markers! He is just too thoughtful! Wonder who he takes after? I hope you all have a great Valentines Day- and I apologize in advance if your kid is in Landon’s class- I will hold onto the Valentines for a day- then out they go! My 640-sq foot home has no room for anything extra! TRUST ME!

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photo-40 Namaste~

Joy

Listen to Your Mother- Providence Submission

Listen to Your Mother submissions are due Feb 14th. So soon…..ahh……(stop blogging Joy- start writing)…… For those who follow along- you know I auditioned for Listen To Your Mother – Providence last year. I did not make the cut. I will not sit here and lie and say I wasn’t upset. I was. But after about 2 weeks I realized something. I wrote my best piece yet. A piece that I know Landon will appreciate once he is older. A piece that helped people realize why I call Landon, “a miracle”. A piece that may have gotten some naysayers off my back about wanting an only child (side note- I can care less what you think really). It was a perfect piece.  If you want to re-read it- you can do so here. While I really would love to audition with this piece again- because I feel it is a story that needs to be told, I am not.

I am working on another piece. A piece that I feel is like the elephant in the room if you will…….Some may feel the same way I do- but are too afraid to admit it because they fear what others may think. Well, I will be the guinea pig. I have finally been able to put two & two together and figure out what has been plaguing me all these years.

If I don’t make the cut this year- I will post my essay on here right away.  However, if I am lucky enough to be chosen, well you must come and get tickets to watch me rock the stage on May 10th (and of course I will post after the show for all you non-local readers). I am excited to continuing writing this piece and hope I do it justice! But, its all about me and my feelings- and I believe you should never feel bad for how you feel. Hope I kicked up some suspense……….That is all…..

Namaste~

Joy

31 Things You Oughta Know About the Woman Behind the Blog!

Yes- I am sure you know the basics. Either you are friend, a friend of a friend, a Facebook friend or read my blog weekly…….

I am Joy. Married to my baby’s daddy. Live in Warwick. Love the color purple. Love cupcakes & margaritas. I am from NJ.  My son has Sensory Processing Disorder. Travel anywhere I can. Write my blog for fun (& therapy). But do you know the real “Me”. Would you still read, be my friend, friend of a friend or Facebook friend (stalker) if you knew the real me? Don’t get me wrong, I am not a monster. But what I am is someone who has a clear understanding of what she likes, doesn’t do bullshit and has no tolerance for ignorance. Therefore sometimes people don’t like that- especially the ignorant ones!

I turned 31 on January 5th- and to honor my glorious day of birth, here on Jan 31st I give you 31 THINGS YOU OUGHTA KNOW ABOUT THE WOMAN BEHIND THE BLOG!

31. I don’t make “lasting” friendships easily. My guard is always up- and he is a fighter.

30. I wish I was a Canadian.  But I am still proud to be an American! I just love all things CANADA!

29. More than any other place, I wish to visit Greece. (and Italy….and….everywhere)

28. I have only ever wanted 1 child. 1 perfectly imperfect child to call my own!

27. I have dated men from almost every ethnic background. Taste the Rainbow Ladies!

26. My most exceptional work is Landon and will always be Landon.

25. I have an issue expressing happiness. It makes me feel strange inside and in turn sometimes it comes out as anger.

24. Most days you can catch me going “all natural”, for I hate Bras.

23. I will never ever ever in a million years go sky diving.

22. I have Sensory Processing Disorder, diagnosed as an adult. Betcha didn’t see that one coming! Or did you?

21. I love Yoga. It makes me feel strong & sexy. Namaste~

20. I have a glazed stick from Dunkin Donuts every morning for breakfast. It is my addiction.

19. I quit smoking January 12th 2007, and not 1 day goes by where I don’t want another one. But I won’t give in.

18. I belive in Karma. And its a Bitch Baby!

17. I am adopted and so is my little brother.

16.  My husband is the smartest person I know. Professor, Entrepreneur, Businessman, Published Author, WordPress Expert, Public Speaker- See for yourself!

15. I have Social Anxiety Disorder. All those years quietly watching in a corner- I have come to sense “Bullshit” like no-ones business. I don’t do Bullshit.

14. I have no tolerance for the “N” word- I grew up defending my brother and I would defend anyone anytime from that word.

13. I live in a 840 sq. foot home with my husband, son, 2 dogs & 2 cats. Yes, It’s crowded.

12. My dream home is a quaint 1,000 sq. foot log cabin, open floor plan and wrap around porch. Someday!

11. I am a child of divorce. It still affects me even as an adult.

10. I dye my hair monthly. I get bored very easily. It’s another way for me to be creative. All these creative juices flowing………

9. I primarily shop in thrift stores for our clothes. Ask me the best ones for designer labels- I will share my secrets!

8. My favorite food is Potatoes. Baked. Fried. Stuffed. Mashed. It’s all good……

7. I refuse to eat Lamb & Veal.

6. I have PKU. It is a rare genetic disorder that means I lack the enzyme to break down protein.

5. I live for football. I study the game, the players, the history. From NJ- but my team has been the New England Patriots since I was 9.

4. I utterly despise baseball.

3. I am addicted to food. Thus- I am a Lifetime Weight Watcher.

2. I listen to Sports Radio in the car. No music.

1. My boys- Jesse & Landon are the reason I am living!

 

NAMASTE!

Wordless Wednesday- Skiing In NH

 

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Night Snowtubing

 

              NIGHT SNOW-TUBING

 

 

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    DAY OF SKIING

 

 

 

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INDOOR FUN!!!

We had an impromptu trip to NH/ME this weekend! It was 72 hours of jam-packed action! Skiing, Snow-tubing, Water-slides, Yummy Food, Shopping and yes Lots of driving! Landon was amazing- even though he was having his “sensory” days more often because of the lack of schedule, sleep and new environment. But that never puts a damper on our fun. We work with him to make sure he has the best time regardless! And I think these pictures prove he did.

Skiing & tubing at King Pine Ski Area

Hotel Accommodations : Hampton Inn & Suites North Conway, NH

Dinner- Yankee Smokehouse

~Namaste~

Worries & Sensory Processing Disorder : Post, Review & Giveaway

The Worry Monster. My kid has it. Does your kid have it? Heck, I have it. I worry all day everyday. Its in my nature. It was only fitting that Landon be a worrier like me, even though I wished it otherwise. Having Sensory Processing Disorder only amplifies his body’s reactions to his anxieties. In Dr. Dan Peters book, Make your Worrier a Warrior, he teaches parents & teachers how to help a child who suffers from anxious tendencies.

The Worry Monster is real. This book only reinforced what years of therapy has taught me. While my worries may be silly to others, they are very real to me. Sometimes worries can affect how your body reacts. From personal experience, I know this feeling is terrible. Just like the TLC song, “I get weak in the knees, I can hardly breathe, I lose all control……..It’s an awful feeling that can happen anywhere, anytime. The fact that I know how my son feels when he has his “attacks”, well it just breaks my heart. I wish I could take all his worries away. But, I know that is not possible. Instead, he needs to learn how to use his worries in a positive way. This book shows you the tools needed to get there.

Say NO to the Worry Monster photo via Dr. Dan Peters

Say NO to the Worry Monster photo via Dr. Dan Peters

First and foremost, this book taught me to externalize the problem so it becomes something outside of himself. This helps him narrow in on the worry without having a close personal reaction while working on it. I found this to be extremely helpful for Landon as well as in my personal experiences. It allows the worrier to feel as those they might be able to control their worry.

Uncovering just how powerful the physiological response of excessive adrenaline was quite interesting. When I read all the symptoms that can occur from too much adrenaline, Landon was so happy. He yelled, “I get that” and “Just like me”. It made him realize that are other kids out there who experience anxiety like he does. It was a great moment for me as a mom to see him actually feel good about his anxiety, rather than shame & guilt.

The book is filled with writings of worries and achievements from children and parents who have tamed the Worry Monster. It was interesting to read some of the worries our kids of today are facing. I was so proud when I read one where they talked about how they faced a fear they previously had.

Tame the Worry Monster Today Photo via Summit Center

Tame the Worry Monster Today Photo via Summit Center

Things to remember-The most important pieces I took from this book:
The Worry Monster is a Bully
Our tone of voice, as much as the words we use, help our children feel hopeful.
The more you talk about the Worry Monster, the weaker he gets.
There are many types of anxiety that can affect your child
Helping your child to face his fears is key in helping them go away
The more we think worrisome thoughts, the more adrenaline is released, the more scared we feel.
The Worry Monster is always lying to you.
Worries and fears can be broken down into baby steps.

Listen, we all worry. But, it’s how you react to those worries that can affect your daily life. I urge any parent or adult for that matter to grab this book and uncover why & how our bodies react to anxiety & stress the way it does. You will learn why your heart races fast and why you feel clammy and dizzy. This book is not a magic cure. It’s a guide to help you and your family on a journey to live your best life. No-one wants there child to hide away from life, you want them to live it. With this book, you will learn the tools needed to help them reach their potential!

Amazon is working to quickly restock the book. Lucky you-  I have a digital copy of both of his books (parent + tween/teen review copies) to give away to a lucky reader. You do not need to have Kindle, just the ability to open a .pdf file and away you go on your path to taming the Worry Monster! Please remember, these opinions are mine and mine alone.  Enter today to start your journey……..

*Laura Rossi Public Relations provided the review copy www.laurarossipublicrelations.com 

 

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Christmas Overload

Christmas overload. Yes it can happen. There is a possibility that there may be too many presents to open, too many parties to attend, too many delectable sweets to eat, and way too many family members to talk too. It can happen to anyone. . But especially to a sensational kid-my kid! It happens to me every year as well.  I love the holidays, but I like my alone time with my family just as much. Having divorced parents which are in two separate states, in addition to in-laws in another state, the holidays are a bit hectic to say the least. This year, although it was still very busy, we decided to keep Christmas Day to ourselves ( Decision was AWESOME- by the way).

Christmas Eve

Christmas Eve

Crowds, noise, new people, days off schedule are all things that can trigger a sensory attack for my boy. Heck, it throws me off my game. As much as I am a social butterfly within my circle of friends, I however am not when it comes to my family or large gatherings.  And my family probably created the term “family drama”, so you can imagine how fun our gatherings can get.  WE are a loud, sometimes too opinionated, Italian family. Things can get….well……for another day…..moving on…..

A quiet break with his cousin

A quiet break with his cousin

Before Christmas Eve, we had already been to 3 family Christmas parties. Landon was a rockstar at all of them. He kinda has his own schedule that he follows at parties. He eats super fast, then asks to be excused. He doesn’t like the table setting, with all the jabbering, and close seating. I can tell it makes him uncomfortable. I am so proud he is able to use his words (most times) to tell us how he is feeling in that situation. He then finds a quiet spot to read on the Ipad, play a game, or watch a movie. Sometimes if there is another kid, he will ask them to play. He has figured out what works for him. And I don’t listen to anyone judgements on it (well try to anyway).

Christmas Morning

Christmas Morning

Christmas extends all the way into the New Year for us- which is why I say Christmas Overload is something that happens almost every year in the Friedman Household. On the 28th of December we will be having another Christmas party with the my husbands family- then right after the New Year is my birthday. I decided NO party this year- I just want a quiet day at home ( I am sure this decision will turn out to be a good one too). While the holidays are hectic, I do appreciate the family that we do share it with, but most people (family included) don’t realize that it’s not as simple as it seems to just attend any party we want, at any time, any place.  A schedule is something Landon thrives on. He knows what is expected of him at each point of the day. Where things go, where to sit, what to expect to eat etc…. When you take that away from him almost every week for a day or so, it throws him off. Then just when he gets back onto his schedule, we throw another curve ball him. I honestly love the holidays, but am also just as excited to see them leave. It means that my boy will have less “sensory attacks”. As a parent, you want to do whatever you can to make your child comfortable, but I can’t just wave my magic wand (yes I have one) and ask the holidays to disappear! I think that would be unfair to everyone, don’t you?

 I hope everyone had a wonderful holiday season- and wishes for a happy & healthy New Year from my family to yours !

My Sensational Six Year Old

Landon turned 6 a little less than 2 weeks ago. I still can not believe it. I can still remember walking into the Maternal Fetal Specialist’s office that July afternoon in 2006, asking for permission to try and conceive a baby.  We did not get the “permission” we had hoped for, but a path to follow which would eventually lead us to Landon.  He is now our healthy (relatively speaking) 6 year old kindergartener. He has defied odds, overcome many challenges  and still continues to amaze us everyday. I am so proud of who he is. I fully believe I know who he will become. He will become a loyal friend, a humanitarian,  an eager student and an avid adventurer. I see him clearly. He is not afraid to be who he is. At only 6 years old, he truly has found himself. I am so thankful that he is MY son. I get to see all the amazing things he will continue to do in his life.

Here is a glimpse into our day as we celebrated our little ninja!

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