Organizing your records:
Does your child have an IEP? Get a sturdy 2-3 inch binder. This will be traveling with you for many years to all your meetings.
- IEP/504 (include all 504 plans or IEPs and amendments)
- IEP progress notes (YOU MUST RECEIVE THESE EVERYTIME A "REGULAR ED" REPORT CARD COMES HOME - even if it takes another two weeks or so.) If you receive three report cards, you receive 3 progress notes with details about how your child has progressed on IEP goals.); IEP written notices, also called "prior written notice" even when written after a meeting (These are the school's meetings notes. Include your OWN meeting notes in this section. Legally, you are allowed to bring anyone to an IEP)
- Special education evaluations and reports (include any private evals or medical reports, if that applies)
- Standardized Assessments (include any state assessments-in MAINE: NWEA, NECAP, STAR, Acuplacer-high school-PSAT, SAT; School Report Cards (include high school transcripts)
- Home/school communication (either log time, date, content of calls or copies of emails pertaining to services, grades, IEP)
- Timeline: each year document concerns about school work and staff interaction/student placement. You can't predict when you needs this, so do it proactively. It can be helpful in Annual IEP or 504 plan review when you are asked to document parent concerns IN THE IEP or verbally at a 504 review meeting.
- ALSO PRINT OFF A FEW CLOVES FACT SHEETS TO HAVE HANDY AT MEETINGS FOR NEW STAFF.
IEP EXPLAINED (the form):
Executive Functioning information:
Laws to keep in mind: ADA (504), IDEA (IEP), FAPE (Free Appropriate Public Education)
And resources to guide you at meeting time:
- Evaluations http://adayinourshoes.com/iep-evaluations/
- Parent Input http://adayinourshoes.com/creating-vision-statement-childs-iep/
- Documentation http://adayinourshoes.com/iep-prior-written-notice-pwn/
- Legal help http://adayinourshoes.com/wrightslaw-iep-special-education/
Peace, Love, Heal - A blog about living with CLOVES
Video about Croc Modification - Created by parents of a child with CLOVES
Croc shoe modification plan - From the Proteus Syndrome Foundation's website. Many people say this process works well
Complex Child E-Magazine - Complex Child is a monthly online magazine written by parents of children with special healthcare needs and disabilities
Providers who can assist with Air Travel - Private and commercial providers who may be able to get you/your child to a multidisciplinary Vascular Anomalies Center, for medical treatment.
Angel Flight, now called “Air Charity Network”: www.aircharitynetwork.org
Family’s home airport must be less than 1000 miles from Boston and child/adult must be able to fly on small aircrafts.
Miracle Flights: www.miracleflights.org . This organization uses volunteer pilots, corporate aircrafts AND commercial flights.
Northwest Airlines KidCares:
The Northwest Airlines KidCares medical travel program provides air travel to children age 18 and younger who are unable to receive treatment in their home area. The KidCares program is fueled by generous mileage donations of Northwest's WorldPerks members, which are then matched by Northwest. Availability of the program is based on that donated WorldPerks mileage, and consideration of each request is based on the following guidelines.
Mercy Medical Airlift: www.mercymedical.org They are associated with Angel Flight. Commercial flights.
Operation Lift Off: http://www.operationliftoff.com/Mission.html. Provide air transportation to specialized care and treatment centers.
List of multiple options: http://mercymedical.org/helpful-links/
In addition, if your child has Medicaid, some or all of their medical travel/expenses may be covered. Check with you/your child's Medicaid worker.
Angel Flight East - is a nonprofit organization that facilitates free air transportation to children and adults in need of medical treatment far from home. Volunteer pilots use their own aircraft and pay for all costs of the flight. AFE covers a 14 state territory from Virginia to Ohio to Maine and for destinations beyond that, we link up with other volunteer pilot organizations.
Companies that sell two different sizes of shoes - List of companies that provide two different shoe sizes
The Emerging Genetic Mosaic of Lymphatic & Vascular Malformations
Children's Hospital Boston discusses four syndromes with somatic PIK3ca mutations
CLOVES Syndrome at Boston Children's Hospital
Treatment and diagnostics at Boston Children's Hospital
Facilities/Physicians who treat Complex Vascular Anomaly Syndromes
List from National Organization of Vascular Anomalies (NOVA) of US providers
Children's Hospital Boston - Vascular Anomalies Center (VAC)
The Vascular Anomalies Center (VAC) at Children's Hospital Boston is a team of 25 physicians—representing 16 medical and surgical specialties—who are experts in the field of vascular anomalies
Cincinnatti Children's Hospital - Hemangioma and Vascular Malformation Clinic
Multidisciplinary treatment center for vascular anomalies
Questions to ask your Doctor
A comprehensive list of questions to ask your child's doctor/your doctor about CLOVES
Guidelines for Imaging Vascular Anomalies
Guidelines for MRI Sequences, MRI, Angiogram and Ultrasounds developed by Children's Hospital Boston
Descriptions of types of Vascular Anomalies
In depth look at capillary malformations, venous malformations, arterio-venous malformations (AVM), lymphatic malformations and mixed
Spinal Cord Anatomy/Injury -
Description and images from US National Library of Medecine
Navigating the Ecosystem of Translational Science (NETS thru Genetic Alliance)
A map and guide developed by Genetic Alliance of the drug development process
Incredible You - A Book for Kids with CLOVES
This book was created by author Lindsay Passodelis, in collaboration with CLOVES Syndrome Community. This book is geared towards kids who are between the ages of 8 and 13 years old, and is suitable for kids with CLOVES, their friends, and family members.
In this book you will meet Kate, a ten year old with CLOVES Syndrome. You will read about Kate's medical experiences, how she talks about CLOVES, her friendships, how she copes and how she loves to have fun.
Suggested donation for this book is $20, to cover our costs to print and ship. If you put a check in the mail, enclose a note with how many copies of the book you would like.
If you'd like a copy and cannot afford the $20 suggested donation, please contact us at firstname.lastname@example.org, as a generous donor has provided us with the ability to gift a limited number of copies to people with CLOVES.
Many thanks to everyone who supported this project and saw it to fruition!
A Resource for Kids about Segmental Overgrowth - by Segmental Overgrowth Study
Bandaides and Blackboards - This is a site dedicated to kids growing up with medical challenges
Sew Able Dolls - Unique dolls just like you! - a company that makes dolls with special needs, wheelchairs and adaptive equipment
Website about pets with special needs - A website about adopting and caring for pets with special needs
Paralyzed pets having fun - A recent CBS article on pets with special needs
CLOVES Family Assistance Guidelines/Application Process - This document explains who is eligible for assistance and the process involved in applying.
CLOVES Family Assistance Application - This document should be completed, with necessary supporting documentation, and returned via mail or email, for consideration.
CLOVES Family Camp - Greenfield, NH
We held our first CLOVES Family Camp in July of 2018 in the woods of New Hampshire. It was such a wonderful opportunity to meet and see new and old friends.
CLOVES Family Camp was made possible due to a generous grant from the Finlay Foundation, the programming, staff and in-kind support of Zebra Crossings and the financial generosity of several donors who were committed to making this dream become a reality.
Check out what families are saying about our first CLOVES Family Camp. We are planning our next CLOVES Family camp for 2019. To stay up to date on the details of our next camp session, please sign up for our mailing list here. We are already looking forward to next time!
"The accommodations were fantastic."
"I no longer feel so alone."
"All the staff were super attentive to the needs of those who participated in camp. My son spent an unforgettable weekend. My family and I enjoyed the presence and shared experiences with others."
"This event has touched my heart and I have learned so much meeting others that are going through the same situation."
"The people were the best part."
"Zebra Crossings did a fantastic job!! They were so helpful and encouraging the entire time. I only wish we could have all stayed longer."
"I enjoyed all the activities and our group talks. I found everyone to be so helpful. It was great exchanging information from other parents. I learned a lot at camp from everyone. I truly appreciate all of them."
"I had FUN!!!!"
"Attending CLOVES Family Camp was a fun, positive, new experience for our family. It was such a special time and we look forward to doing it again."
"I loved the rock wall!"
"Very relaxing, fun times, and great memories!"
"CLOVES family camp is the perfect way to meet and get encouragement from other families. Camp is an easy way to relax, learn and grow. It’s a laid back weekend meant specifically to help families meet and share a little bit of life together."
CLOVES FAMILY CONFERENCE:
For details about our next conference in 2019, please sign up for our mailing list here.
What kids and families are saying about the 2016 CLOVES Family Conference:
"We just wanted to say you are all some of the tallest and strongest people we have ever met and thank you for making us part of your family struggle, we have learned so much. You all made us feel so welcome and just wanted to let you know no matter how hard the struggle may be, you are doing an amazing job . Stand tall and stand firm love from all of us." - Parents of a child with CLOVES
"This is more fun than our own summer camp!" - Child with CLOVES
"I made a new best friend here!" - Child with CLOVES
"Why did we travel to Boston? I came to connect my child to this team that has seen more people with CLOVES than anywhere else in the world. It was tremendously powerful to interact with such dedicated doctors and staff, and to know they are making progress. And we travelled to be among other families affected by CLOVES, and know that we have an understanding and support from our shared experience. I saw a lot of resilience and hope in that room. It's worth it for a connection that will help carry them through the hard times that come with CLOVES." - Mom of a child with CLOVES
"Last night we finally met our CLOVES family that we have only known via FaceBook or emails. It was a little nerve wracking for us, especially my son, but walking into that room was a life changing event for us.
My son was so shy at first, not knowing what to expect, but he did amazing after a little nudge. I sat there just watching him interact with the other kids. I witnessed something last night I haven't seen in a very long time. I saw a boy that wasn't afraid to be be himself. I saw him throw caution to the wind and not hide anything about himself. Seeing him open up so easy did bring tears to the eyes.
After the conference was over and we were heading back to the hotel Rylan said something that I have wanted to hear for so many years. He said "Mom I don't want to leave my new friends, they are all just like me" I asked him what his favorite part of the whole day was and his exact words were "hanging with the cool kids". I want to thank everyone for the warm hellos and the open arms. This trip has helped me, as a parent, to open up and actually talk about the hard stuff and not have to worry about trying to explain myself." - Mom of Child with CLOVES