RAISING JOEY

Sensory Processing

I’m so behind on posting updates, especially about Joey! Last week, I went to a PPT for Joey regarding the Sensory Procesing evaluation that his school sent in a specialist to do at the begining of the school year.

The evaluation was performed by an Occupational Therapist that specializes in kiddos with sensory processing difficulties, and also by Joey’s therapy staff at his school. With all the tests/ evaluations that were done, they came to the conclusion that Joey does indeed have the Sensory Processing Disorder/ Sensory Intergration Disorder.

I knew in my heart that Joey had this sensory disorder before they even diagnosed him. After reading several books on it over the summer, I just knew it. I’ve seen so many other kiddos who have Down syndrome who also have sensory problems but there’s times that Joey just “shuts down” when he gets over stimulated and it’s so sad. It breaks my heart that so many everyday things that don’t bother most kids, upset Joey the way that they do.

Certain sounds/ activities, he squats down towards the ground and covers his ears. It really does break my heart. But thankfully, the OT who performed the evaluation gave many ideas/ strategies to use with Joey to help make it less sensitive to activities that may overwhelm him.

I’m so grateful to have such an awesome, supportive school staff that is willing go out of their way to help Joey out!

I’ve also started taking Joey to weekly feeding therapy appointments at CT Childrens Medical Center and she is also going to be working on sensory related therapies with him as well.

Xmas Pics 2009

Just a few weeks late but here are our pictures from our trip to Ohio for Christmas. Enjoy!

Poor Jo-Joe

Yesterday, I took Joey to an appointment with his audiologist to have the molds made for his new hearing aid. Thankfully, the audiologist’s office is in the same town that my husband works so he was able to meet us there.

As soon as I pulled into the parking lot, Joey KNEW that he was going to an appointment of some sort and the poor little guy started acting crazy before I even got him out of the van.

Patrick pulled up just a few minutes later which helped to calm Joey down a little as we waited to be called back. The audiologist came out and greeted us and walked us back to her office. As soon as she came out and Joey saw her, Joey gave her the look of the devil, he’s one smart cookie, hahaha!

Before she took the molds, we went over what his hearing aid will look like and other tidbits we need to know. We even got to pick out the colors that the hearing aid can be! The mechanical part that goes around the back side of his ear will be blue and the part that actually goes into his ear will be blue and yellow swirreled (Down syndrome awareness colors!).

After going over the logistics, we got to the tough part, getting the mold of Joey’s ear…

The minute Patrick picked him up, he started screaming and screaming and screaming….

Once the foam was put in Joey’s ear, no one could touch it or Joey’s ear (pretty much had to have Joey sit still) for about 4-5 minutes while it hardened and Joey didn’t like that fact at all. I’ve only seen him flip out that bad one other time and that’s when he got an echocardiogram.

Poor kiddo screamed until he was pretty much dry heeving. Even after she took the mold out, he still wasn’t happy so Patrick took him out to the car while I finished up in the office.

At least the hardest part is over, next appointment on Febuary 3rd, we go back to pick up the actual hearing aid then learn how to use it…..

Go Maddy!!

A fellow blogger, Barbara Curtis, who also has a son with Down syndrome, actually she has FOUR sons who have that beautiful extra chromosome, well, her daughter, Maddy was on American Idol last night and was AMAZING! Maddy recieved a Golden Ticket from the Idol judges so she will be going on to Hollywood!

Before she auditioned, there was a nice little segment on Maddy and her brothers

The keys to life….

I just love articles written by Beverly Beckham, especially her articles about her grandaughter, Lucy who has Down syndrome. This article isn’t about Lucy, but I really enjoyed it and thought I would share it with everyone.
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Songs: They’re the key to life
By Beverly Beckham, Globe Columnist | January 3, 2010

Canton resident Beverly Beckham can be reached at bevbeckham@aol.com.

Merry Christmas!!!

To all of our readers, we wish you all a very Merry Christmas and a Happy New Year!

Love,
Jessica, Patrick, Joey, Leah and Aiden

Let There Be Peace on Earth

I posted this video last year and thought it would be good to post it again. Brings me to tears when I watch it, absolutely beautiful and moving!!

Long overdue post!

I want to applogize to all of my readers, I’m way overdue for an update. My mother keeps reminding me to post something on here but I’ve been so busy! Let’s see, since I last posted a lot has happened.

Right before Thanksgiving, Joey came down with H1N1 and spent 3 1/2 days in the hospital. Very, very scary. It’s weird, you hear on TV about children ending up in the hospital thanks to that yucky illness but I never thought one of my kids would end up with it!

The ironic thing is that THE DAY that Joey came down with it and ended up in the hospital is the day he and his sister were suppose to get the vaccines!!!

Leah also came down with it the next day but was able to fight it off mostly on her own with only a few doses of TamiFlu.

A few weeks later, Joey came down with the croup and that resulted in another trip to the ER but thankfully we were sent home a few hours later after a breathing treatment and a shot of steriods.

We’ve also had several colds in the middle of all of this (all of which Joey has caught) so we’ve been a healthy bunch, let me tell ya, hahahaha!

Leah and Aiden are doing good. We can’t get over how big Aiden is getting. Last week out of nowhere he no longer fit into his 0-3 month clothes so we had to make a trip to Kohls to get him some new clothes!

And poor Leah has been averaging 3 ear infections a month for the past few months so she has an appointment to see an ENT for tubes.

Again, I’m so sorry for the lack for posts lately, but between Joey’s illnesses, being a mom to three, and being addicted to Facebook, I put my beloved blog on hold and kept putting off posting on here!

We’re leaving tomorrow for Ohio for Christmas, so I will be back after Christmas!!! I will leave you today with a couple new pictures of the kids and one of our first snow fall from the other day

CJ’s Traveling Afghan Project article!

CJ was one of the first bloggers who found my blog back when Joey was born! I credit CJ for getting me addicted to blogging!!!
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Appleton mom CJ Field’s crocheted afghans comfort families with Down syndrome

By Kara Patterson
Post-Crescent staff writer

“Once a family is matched for Melissa, I will be making Melissa an afghan of her own,” Field said.

31 for 21, October 21st

Last night at Joey’s parent-teacher conference, Joey’s teacher gave me a sheet from Joey (with her help) with an update of everything he’s doing at school.
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These are things I like and I am good at in the classroom setting:
-Attending and participating during circle (w/ a smile on his face)
-Imitating teacher movements/ gestures for poems and songs
-Signing action songs/ poems
-Referencing peers to model their movements during circle
-Eating snack independently with adult guidance as needed (especially chocolate pudding and apple sauce)
-Joey is highly motivated by his peers during during music & movement activities
-High level of innate mastery of motivation for self initiated activities
-Persistant exploration of the environment and engagement in familiar and routine activities and material use.

These are things I am getting better at in the classroom setting:
-Participating in table top actitivies with adult facilitation ie.. gluing, painting, markers
-Following one step directions in the classroom with adult facilitation
-Pointing to photos/ visual cues to express desired activity
-Transitioning within the daily schedule using a simple visual schedule board
-Increased comfort levels improve overall performance in most areas of the daily cirriculum
-Parallel playing near peers while engaged in familiar and preferred activities ie.. trains, cars, bean table, water table, simple 1-2 step play schemes with dolls/ food/ puzzles
-Transitioning to least preferred activities with adult support
-Increased symbolic play with adult/ peer modeling
-Increased attention span with familiar and highly preferred materials
-Emerging trial and error problem solving skills with materials of interest ie… puzzles, bean table, trains/tracks, legos, instruments

These are things I need help with:
-Toileting, washing hands, caring for personal belongings, transitioning from one activity to another when he is not interested or in the mood to engage.
-Safety awareness concerns require constant adult supervision/ facilitation in the classroom and outdoors
-Increasing attention span with activities/ materials that are unfamiliar/ least preferred

31 for 21, October 20st

Joey made the list of kiddos who have Down syndrome on parenting.com! Check out my little buddy!!!

A Special Joy, Joey’s picture!

31 for 21, October 19th

Siblings and Down syndrome

I often think about the future when Joey, Leah, and Aiden are older, and how they possibly mightb react to Joey having Down syndrome. This obviously won’t be the case for several more years, if ever.

I’ve talked to many parents who have older children and their children really never had a problem with their sibling having Down syndrome. They don’t see a difference with their brother or sister but sometimes, they need a little information and support.

Below are some websites parents might find useful for their children.

-What the other children are thinking: Brothers and sisters of persons with Down syndrome. By Dr. Brian Skotko
-We’ll Paint the Octopus Red by Stephanie Stuve-Bodeen
-The Best Worst Brother by Stephanie Stuve-Bodeen
-Our Brother Has Down Syndrome by Shelley Cairo
-Life is far from ordinary for these kids. Teens talk candidly about growing up with a sibling who has special needs. By Gail Rosenblum, The Star Tribune
-Down’s Syndrome Association’s publication on Siblings & Down syndrome.
-The Other Kid

31 for 21, October 17th

I just love the fact that parenting.com is doing this very special showcase of beautiful kiddos who are blessed with Down syndrome, several of which look familar :). They did the same thing last year too!!!

A Special Joy 2009: Kids With Down Syndrome Galleries
See photos of your snap-happy kids, who happen to have Down Syndrome, in honor of National Down Syndrome Awareness Month in October.

Round 1
Round 2
Round 3
Round 4
Round 5
Round 6
Round 7

I’ll keep adding links to new rounds of pictures on this post as they become available!!

31 for 21, October 16th

In a past interview about the movie “X-Men, The Last Stand”, Halle Berry mentioned her nephew who has Down syndrome. Below is the portion where she mentioned him. You can read the entire interview here.
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UGO: The cure in this movie raises so many interesting questions.

HALLE: My nephew has taught my family so much. My sister mostly has learned so much about herself, about family, about who she is and what she is made of. So to take that away from her would do her such a disservice. I think that people are brought here the way that they are for a reason. I wouldn’t chose to change him because I see the benefit that his little life has brought to all of us. Now if he said to me that he didn’t want to have Down Syndrome anymore, then I would say that I would change it if I had the opportunity to. But not knowing his position I would like him to stay the way that he is. We’ve all gotten so much from him.

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Another name to add to my list of famous people who have loved ones who have Down syndrome!

31 for 21, October 15th

OK, so I missed a few days worth of posts, opps!!! Anyways, I love cute, funny saying bumper stickers, I actually have one on the back of my van that says, “My kid has more chromosomes than yours!”. A couple others I thought of that would be cute…..

“Genetically enhanced”

“Designer gene original”

“What’s an extra chromosome between friends?”

**What cute sayings can you think of for our kiddos who have Down syndrome???

31 for 21, October 11th

I dunno about you guys, but this site has some REALLY cute shirts for kiddos who have Down syndrome!!!!

Fickle Zeal’s Online Shop!

31 for 21, October 10th

Emily Perl Kingsley not only wrote the poem “Welcome to Holland” but also is an Emmy Award winning writer for Sesame Street. One of my absolute favorite things she wrote for Sesame Street is the song “Count Me In.”

31 for 21, October 9th

How about a quick histoy lesson today??

Most people credit John Langdon Down for discovering the common traits associated with Down syndrome in 1866 he wrote a paper entitled “Observations on the Ethnic Classification of Idiots” in which he wrote the theory that it was possible to classify different types of conditions by ethnic characteristics including what he called Mongolism which (thankfully) now is known as Down syndrome.

Dr. Jérôme Lejeune is actually the one who discovered the extra 21st chromosome that truely makes Down syndrome, otherwise known as Trisomy 21 in 1959.

Dr. Lejeune found the 21st chromosome by taking a skin sample from a patient who had Down syndrome and looking at the chromosomes and saw the extra 21st. He spent the rest of his career (and life) researching Trisomy 21 and specializing in the treatment of individuals who have Down syndrome.

31 for 21, October 8th

If you’re in Boston today and are able to, go support Karen Gaffney as she swims across Boston Harbor today to raise money for the CDSC’s neighbor, the Massachusetts Down Syndrome Congress!

Support Karen Gaffney’s Boston Harbor
8 Mile Swim for Down Syndrome

Karen Gaffney will swim eight miles in Boston Harbor on October 8th and make an appearance at the MDSC Buddy Walk at Lake Quannapowitt in Wakefield, Massachusetts on October 11th to help support and raise money for the Massachusetts Down Syndrome Congress. If you want to support her and the MDSC please click the general donation button.

Karen Gaffney is the President of a non-profit organization dedicated to championing the journey to full inclusion in families, schools, the workplace and the community for people with developmental disabilities. She is doing this by creating awareness and calling attention to the tremendous capabilities of people with disabilities. Karen accomplishes this through presentations and workshops delivered all over the country. Karen graduated from St. Mary’s Academy in Portland, Oregon and earned a two-year Associates of Science degree from Portland Community College. She successfully swam the English Channel as part of a six-person relay team. And just last year, she accomplished her biggest swimming Challenge yet… she swam 9-miles across Lake Tahoe in 59-degree water to raise money for the National Down Syndrome Congress and to show the world that people with Down Syndrome are more alike, rather than different, from everyone else. Karen travels the country speaking to a wide range of audiences about overcoming limitations and about what can be accomplished with positive expectations. Karen tackles any challenge she faces with determination and commitment, knowing she has limits, but not allowing them to limit her drive to succeed. Oh, and by the way…. Karen Gaffney has Down syndrome.

MDSC Mission Statement: To enhance on a continuous basis the lives of individuals with Down syndrome through the education and support of people with Down syndrome, their families, their friends, their teachers, and the community as a whole. To ensure individuals are valued, included, and live fulfilling lives in the community.

Our Vision: The MDSC wants to be recognized by parents, educators, people with Down syndrome, and the medical community as the preeminent organization in Massachusetts for information, networking, and advocacy for and about Down syndrome.

31 for 21, October 7th

What do all of these people have in common?

Charles Darwin (naturalist)
Albert Pujols (St. Louis Cardinals first baseman)
Cathy McMorris Rodgers (Washington Congresswoman)
John C. McGinley (actor)
Eva Longoria (actress)
Gene Stallings (Arizona Cardinals headcoach)
George Will (journalist)
Arthur Miller (American playwright)
Jamie Foxx (actor)
Jim O’Brien (Indiana Pacers coach)
Emily Perl Kingsley (Sesame Street writer & author of Welcome to Holland)
Heath Bell (San Diego Padres closing pitcher)
Charles de Gaulle (French military leader)
Roy Rogers & Dale Evans (actor & actress)
David Ragan (NASCAR driver #6)
Sarah Palin (Alaska’s governor)
Julie Newmar (Actress- original Catwoman)
Lowell Weicker (the former Govenor of Connecticut)
Rex Hudler (retired baseball player & Angels Baseball announcer)
Damon Hill (Formula One Racecar Driver-1996 Champion)

Click here to find out!

31 for 21, October 6th

Jennifer Graf Groneburg’s book, Roadmap to Holland is a must read for any mother of a child who has Down syndrome. Her true words and raw feelings about when her son was born help to make any mother know she is not alone and she is not the only one with feelings like her own.

Another must read!!

31 for 21, October 5th

It was 4 years ago today that I recieved that call from my obstrician telling me that the prenatal testing I had done the previous week came back positive for Down syndrome. That phone call changed my life forever. That day, I started my journey into Holland.

It was a trip I never imagined I would ever take.

It’s a journey that has had so many twists and turns. Good times, bad times. Happy times, sad times. Scary times, extremely fun times.

While I was pregnant with him, there was a time we weren’t sure if he would even make it. He had a cystic hygroma on his neck and many babies who have those are stillborn.

Also, while pregnant with him, for several months, we weren’t sure if he would be like 70% of other babies who have Down syndrome and have a heart defect. Thankfully, the day before Thanksgiving in 2006, we found out his heart was just fine.

Then by the grace of God, the cystic hygroma dissolved and he was born perfectly healthy!

Joining the CDSC and attending our first convention while I was still pregnant with Joey was like walking into high school on the first day of my freshman year. So scared and nervous but the day ended up being wonderful and I made so many new friends. Now, I have lifelong friends thanks to the CDSC!

Then finally on March 14, 2006, Joey was born weighing in at a whopping 5 lbs, 9 oz. He was so beautiful, I didn’t see an extra chromosome, I saw a handsome little boy with almond shaped eyes and cute, crooked little pinky fingers.

Each milestone has been a triumph. When he was able to finally hold up his head, we cheered. When he finally was able to sit up on his own, we rejoiced. When he took his first steps, it was like he had just won the Super Bowl!

And boy oh boy, wearing that darn helmet for those 16 weeks was an adventure of it’s own! Poor little guy had to wear that helmet for 23 hours a day!

Then November 2007, when Joey had to have intestinal surgery to repair a malrotated intestine, that was definetly a test of my own personal strength. I grew a few more gray hairs that week he was in the hospital!

Having a child with any special need, no matter what the diagnosis is, changes a parent in so many ways. It can be very stressful and have its ups and downs, but for me, it changed me for the better. Joey helped to make me the person I am today. Before I had Joey, I was heading down the wrong path and was becoming a person I didn’t like. Thanks to him, I boarded the plane to Holland and I’ve never looked back. It has been the journey of a lifetime!

I love you Joey!!

~My story about recieving Joey’s prenatal diagnosis.

~If you’re not sure what I’m talking about when I talk about taking my trip to Holland please read Welcome to Holland, by Emily Perl Kingsley

31 for 21, October 4th

Unfortunatly for me, 4 years ago, I was a frequent user of the “R” word. I never gave one thought to how much it could really hurt someone emotionally who has a loved one who has Down syndrome or any other disability. Once I had Joey, I said it once and my own words, hurt myself. Tears welled up in my eyes when I realized that my own words were used often by others (and myself) in a negative way.

Some people don’t even realize when they say it or think nothing of it.

The use of my words has changed dramatically since Joey was born. I used to also say, “That’s so gay!” and now I no longer say that either. So many people think they’re being politically correct with their language and they’re not.

To me, the use of the word ret@rd is just as bad as saying the “N” word. It hurts just the same to me as the “N” word hurts to African Americans.

Please check out the websites listed below about the use of the “R” Word and “People First Language.” Words matter, please use them correctly.

The “R” Word Campaign

Also, be sure to check out Kathy Snow’s website on People First Language!

31 for 21, October 3rd

Looking for a new book to read?? How about Gifts 2?

Throughout the month I’m going to post various books on Down syndrome. One of the best publishers who have books on disabilities is Woodbine House, stop by and check them out!
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Acceptance, courage, friendship, awareness, and joy–these are the gifts recounted in more than seventy inspirational essays included in Gifts 2. Edited by Kathryn Lynard Soper, the follow-up to the bestselling Gifts presents a broader perspective on Down syndrome and life by including passionate stories by siblings, grandparents, cousins, aunts and uncles, as well as mothers of older children. Friends, teachers, medical professionals, and coaches also share the joys of knowing and caring for someone with Down syndrome.

Like the previous book, Gifts 2 helps us see that the hopes and dreams family and friends have for a child with Down syndrome are similar to the ones we have for any child. And, more often than not, expectations are fulfilled–if not always the way we anticipated they would be. A grandparent, inspired by his grandson’s strong will, discovers the ability to persevere and not give up on a job. A brother who assumed he would be the person helping his sibling with Down syndrome describes how often it is the other way around. A young teacher remembers her first student with Down syndrome and it gives her strength and clarity when she is faced with her own child’s diagnosis.

This heartfelt collection is a source of comfort to other families, and offers insight to anyone who wonders how people with Down syndrome live today. Give the ultimate gift, share both volumes with family and friends, your child’s teacher or pediatrician–help raise public awareness and provide others a point-of-view they might otherwise miss.

Learn more about both Gifts books…visit the editor’s site!

31 for 21, October 2nd

Almost 3 1/2 years ago when we found out prenatally that Joey was going to have Down syndrome, I never imagined in my wildest dreams that I would have made the friends that I have who also have children who have Down syndrome. It’s truely amazing how one little chromosome has brought so many of us together.

Some of us bond via Facebook or MySpace, some through Blogging and others through their local Down syndrome organization like the Connecticut Down Syndrome Congress. I have found friends in all of these including my best friend, Melissa!

I also never imagined that I would have gotten as involved with the CDSC like I have. I started out by joining the Buddy Walk Committee, from there I joined the CDSC’s Board of Directors, then from there I started The Holland Committee, which is the CDSC’s New and Expectant Parent Outreach and Support Committee.

After I got The Holland Committee up and running I signed up to take a 6 week Parent Leadership and Advocacy Class. While taking the class, I never imagined what my next step would be. Next Wednesday, October 7 is the CDSC’s Annual Membership Meeting where, myself and fellow classmate/ parent, P.S. are to be voted in by the members & to become the CDSC’s Co-Presidents and work together for the next 2 years!

It’s simply amazing how one simple chromosome can enrich and enhance one’s life in so many ways… amazing friends and amazing opportunities for the rest of my life!