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Planning for your special needs child can be a huge task that can overwhelm the most organized person. Attorney Steve Newbold with Newbold Law is offering another FREE workshop for parents, caregivers and trustees. The workshop is called Seven Step Planning for Special Needs Children. I have attended two of these workshops and have come home with new information each time. I encourage anyone who has a special needs child to attend this workshop because if you don’t make plans early you could miss out on benefits and other valuable information that your child deserves. Below is a copy of the email I received from Mr. Newbold.
Please forward this on to any families who would be interested!
Seven Step Planning for Special Needs Children
April 23, 2013
This workshop will cover special needs trusts and estate planning tips and include a Q&A session. Open to parents,
caregivers and trustees.
Calvary United Methodist Church,
1700 N. Towanda Ave. Rm 111
Please RSVP by phone or email!
Love this! Our daughter has her annual IEP tomorrow morning and keeping our fingers crossed for positive results. We have had wonderful experiences in the past, but this year Taylor was moved to a new classroom. Along with the new changes come even bigger ones for the next school year. I will let y’all know how it goes!
Sam’s Club Members make sure you stop by your local Sam’s Club on Saturday April 13, 2013 for your FREE Health Screening. The screening will include: Blood Pressure, Body Mass Index, Total Cholesterol, Glucose, Dental Tabs, and Vision. Check out the entire Health Screening Schedule offered at Sam’s here.
*Health Screenings are only offered at Sam’s Clubs with a Pharmacy
This past week our family had a huge joy. We didn’t win the lotto or anything like that, but it was for sure amazing! I recently really started using my blog’s Twitter page to try to search and find someone in the United States that has or had a child with Trisomy 15. Our daughter Taylor is 10 and since her birth we have found one other family, in Germany who has a daughter with this same rare chromosome disorder. Although we were happy to have found her and her family, communication is sparse due to the language barrier.
Well last week a Tweet was posted by a hospital in Ohio telling the story of a family who has a little girl with a rare disorder called Trisomy 15. I was so excited that I Tweeted back and within 2 days they had the other family contact me. My heart was clapping and my mind was racing just hoping they wanted to talk to us as much as we wanted to talk to them. We got lucky because they live the same life we do with their own daughter.
Fast forward to this week and many emails have been exchanged and plans for future meetings are taking place. I literally could cry right now because finally someone else knows what it feels like to have doctors tell you what your child will never be. They know how it feels to hold your breath, hoping and praying your baby girl will live a long and wonderful life. I am so happy and Sweet Tay is so excited. I told her we found someone who is just as special as she is. Tay’s response was, “My new best friend forever!” :)
As I was cooking dinner tonight Taylor was helping me by setting the table and I noticed she kept grabbing one of her fingers like it was hurting her. However when I asked her what was wrong with it she kept telling me nothing so I went about finishing dinner. After she was done setting the table she came and stood beside me and began this conversation-
Tay: Awwww Mom I so tired of these hands!
Me:What? What are you talking about?
Tay:They are so freakin’ fat!
Me: No they aren’t why are you saying that?
Tay: I do not, not know. I gotta see a tornado.
At this point I was stumped and just as I am about to ask her again she breaks out singing, “I GONNA POP SOME TABS BECAUSE $20 IN MY POCKET!” For those who don’t know this is a new song playing of the radio called Thrift Shop and after yelling the first sentence she actually finished singing the entire song, with a few new phrases she added on her own.
This might not be the best song for her to be singing, but I don’t mind because you have no idea how HUGE it is that she can hear a song and almost completely sing it word for word just on her own, no music playing to help her out. I don’t care what she sings as long as I can hear her sing forever. I love my Sweet Tay!
I have been exploring the world of Twitter this past week and I stumbled across an amazing new site called The Coffee Klatch. The site actually started as a Twitter page for parents of special needs children to chat and share their ups and downs. Since then it has grown to so much more. They offer links to Special Education Laws, The Coffee Klatch Special Needs Talk Radio, Guest Speakers, and more. I encourage you to follow them on Twitter @TheCoffeeKlatch. This site is a support group for parents of special needs children run by other special needs parents and advocates.
(image credit: The Coffee Klatch)
Today 02/28/13 is Rare Disease Day, where you can rock your favorite blue outfit to show your support for People with Rare Diseases. We are excited about this day and what is means for special people like our Sweet Tay. Taylor was born with a chromosome disorder that is listed as a rare disease. Being diagnosed with Trisomy 15 was both heartbreaking and exciting. We waited for some time to find out why our baby girl was different and once we had the answer, and cried a bit we picked ourselves up and kept on moving. Share this event will all you know and spread the word so everyone in our world will be aware of Trisomy 15 and other Rare Diseases.
If you “Rocked Your Blue” today share your photo with us so we can show the world you care!
“CARE ABOUT RARE”
Taking my kids to the movies is a special treat, but it is also a stressful experience at times for our daughter. Although Taylor is not Autistic she does has Sensory issues that make going to the movies hard. She loves to go, but she either talks through the entire movie or gets upset when there are loud scenes. This makes other movie goers upset, which I totally get. However my daughter has the same right as everyone else to go see a movie and thankfully AMC Theatres agree with me.
AMC offers Sensory Friendly Films for families like ours. The program provides a special opportunity for families to enjoy their favorite films in a safe and accepting environment. The auditoriums dedicated to the program have their lights up, the sound turned down and audience members are invited to get up and dance, walk, shout or sing!
This awesome program is offered nationwide so go HERE to find your local theatre and take your kids to the movies!
February 23, 2013 - ESCAPE FROM PLANET EARTH
March 30, 2013 - THE CROODS 2-D
April 13, 2013 - JURASSIC PARK 2-D
June 1, 2013 - EPIC 2-D
June 29, 2013 - MONSTERS UNIVERSITY
July 13, 2013 - DESPICABLE ME 2
August 10, 2013 - THE SMURFS 2
September 21, 2013 - THE LITTLE MERMAID
October 5, 2013 - CLOUDY WITH A CHANCE OF MEATBALLS 2
November 9, 2013 - MR. PEABODY AND SHERMAN
November 27, 2013 – FROZEN 2-D
December 21, 2013 - WALKING WITH DINOSAURS 2-D
All shows are at 10:00 am local time. Dates and films are subject to change.
Here’s an amazing free downloadable booklet that will help you discover great new diabetic breakfast options. 20 delicious recipes will wake up your taste buds and cut carbs too!
This morning Taylor was really hard to get out of bed. Usually this means she had an accident overnight and she doesn’t want to get in trouble for doing so. However she never gets in any trouble I assure you, but it is usually the same conversation with her when this happens until this morning.
Me: “Tay did you have an accident?”
Tay: “Yes I did, you mad at me?”
Me:“No, of course not Taylor. It was an accident, but you really need to try to get up to go potty so this doesn’t happen because you’re a big girl….right.”
Tay: “No not big girl last night, just little sassy girl Momma!”
She cracks me up daily and accidents are accidents. Listen I don’t care if she has these kind of accidents for the rest of her life because we thought for sure she would still be in diapers well into her teen years. However we are going on 3 years of being diaper free and we are so stinkin’ PROUD OF IT!!!
Finding support groups were a must for my family when we had our daughter Taylor. At first we only needed information about heart defects, but then that grew to needing advice from others about genetic disorders, physical and mental disabilities, and much more. I have to tell you I was a momma on a mission in the beginning. I felt like my free time (like I even had any really) was consumed with research. It was like this new world opened up to me that I never new existed. It was a long road of information that if I didn’t ask no one was offering to tell me, with the exception of a few doctors and special people who we know to this day love our Sweet Tay.
Personally I found comfort from the support groups and conferences we attended in the beginning. My husband wasn’t all about it like I was, he just came along for the ride. Not to say he isn’t an equal partner and supporter, he just handles things differently than I do. He isn’t a big sharer! There are tons of resources out there just waiting for families to find. You have to join the support groups, attend conferences, go to your child’s IEP appointments, and above all be an advocate for your loved one. Listen if you aren’t trust me no one else will be.
Here’s a list of some of the groups we belong to and programs we are a part of:
- UNIQUE-The Rare Chromosome Disorder Support Group
- Dup15q Alliance
- Chromosome Deletion Outreach
- Nathaniel’s Hope
- Make A Wish Foundation
- Special Olympics
- Shriner’s Hospital for Children
- Raynaud’s Association
- American Heart Association
- TRIS Project
- MUMS National Parent-to-Parent Support Group
- Easter Seals
- Exceptional Parent
Please feel free to share in the comments below support groups or info you feel could benefit other parents like us!
When you click to print a $2 off Jose Ole coupon, a donation of $2 will be made to the Children’s Miracle Network Hospitals. What an easy way to give back!
When our Sweet Tay was born ten years ago we never imagined our lives would change the way they did. We knew we were having a daughter and like most parents we bought pink everything and began to plan our future with her. However we had no idea what was in store for us. Our Sweet Tay was born with a rare chromosome disorder that put us down a path of winding, steep, rocky roads with awesome stops along the way. When you are hit with the diagnosis of a disorder that could be fatal and life changing the first thing any parent wants is information. We starved for any information about our daughter’s diagnosis of Partial Trisomy 15 and what we found was so little that it seemed as devastating as the diagnosis it self. However through our own persistence we found support groups and medical information from other people who’s children had rare chromosome disorders too.
To this day we haven’t found a group soley for Trisomy 15, but we have become members of other chromosome 15 support groups. One such group is The Duplication 15 Alliance in New York. Dup 15q Alliance, as it is called by the “chromo world” is an on and off line support group for parents, children, caregivers, and medical professionals. People can share their stories of struggle and triumph with others who get it. There are organized outings, medical conferences, and medical resources for their members. The Dup15q Alliance is currently giving a free handbook out to families who are newly diagnosed with this disorder. What I would have given for this when Taylor was born! If you are or know someone who has a child with Chromosome 15q Duplication please pass this freebie on to them and I would also encourage them to join The Duplication 15 Alliance.
(image credit:The Dup15q Alliance)