The blades of the grass softly whispered their song in my ear, as I laid sprawled out on the checkered cloth, enjoying our teddy bear picnic. Momma made our childhood magical. From tea parties in the garden, family night games of drawing in the dark and Red hots in our hot cocoa while we stared through the skylights waiting to see a glimpse of Santa’s slay.
Daddy read every book series out there in the 80’s to my baby sister and I. You see Little House on the Prairie was my favorite. My momma fixed My sis’ hair like Laura Ingalls and I always looked liked Nellie Olson. I guess that could be why it was recommended that I revisit kindergarten for the second time. To learn better social skills. Apparently I thought I was the teacher.
That same year my older sister Christie was married in March. I was dripping in cream lace and peach flowers. It snowed that morning.
Now there is only 3 of us siblings at home. By the time I was 10 my brother moved on and I became the oldest.
I debated my way through jr high. Danced on the hearts of many in drill team and in my senior year was captain of the cheerleadering squad.
The van was bulging at the seems. My Nellie belle, a 71 VW bug, was in tow behind. Off we went to Southern California from suburbia, conservative Idaho. Nothing could have prepared me for that eye opening experience into the world. I graduated co-valedictorian with a degree in Interior design.
I tempered with fate, falling for business in front and party in the back, criminal boy.
4 months later pregnant and married. Then 4 years later contemplating suicide and drowning in depression. I tidied up and threw away the debris. My little boy, Gavin and I had a vibrant new beginning.
My heart flutters, swooning over the freckled faced red head. Was it Love at first sight? Matt and I met on June 9th, a month later at minor league baseball game I was wrangled into playing a game on the field. Guess what’s in the box! The last box was a ring, Matt was on bended knee in front of a crowd of thousands professing his never ending love to me. A month later we were married in a funeral home. We drove away hearing the clanging of tin cans behind the hearse.
Shortly after Samis 2nd birthday the Economy tanked and we moved half way across the states to Texas. The next to come was my Izzy bug. Now there’s 3. We were happy and fulfilled. Life was planned out, little did I know that God had other plans. After a failed vasectomy, we were expecting our 4th child.
I stood there knowing that was the last time I would see my daddy. His raspy voice said I love you and drive safely. 26 hours later we pulled into the driveway. At 11pm the call came in, daddy was no longer in pain. We honored daddy by naming our 4th child after him, Charliedawn.
Early Wednesday morning my husband and I were crammed on a small bench in the NICU. The sun filtered in warming the ice cold room.
The room became a blur, my head was spinning and the tears stung my cheeks. Words were spewing out of their mouths like lava hitting the ocean; vegetable, no quality of life, will NEVER know who you are and won’t live past 6 months. Our world fell apart.
The phone rang, on the other end was the PICU Hospitalist. My breathing quickened, my heart sank and the words “nothing more we can do” echoed in my ears. However by the end of the day Charliedawn starred death in the face and screamed I’m not done yet! It’s my birthday and I made it to 1.
Shortly after Charliedawns trach surgery, the 3 kids and I crammed into the mini van and ventured out to the next chapter in our lives.
Cactus and rocks as far as you could see was our landscape of our future.
Maybe the journey isn’t so much about becoming anything. Maybe it’s about unbecoming everything that isn’t really you, so you can be who you were meant to be in the first place.
Every March 17, St. Patrick’s Day is celebrated with parades, parties, and a lot of green. This date marks the death of Saint Patrick, the Patron Saint of Ireland. … Today, the holiday has evolved to become a secular celebration of Irish culture. Green garb, leprechauns, pinching, drinking, partying, parades, more drinking.
With all this celebrating how can we include our children?
Eat all things green
Celebrate the day by feasting on all things green. For breakfast, try some green eggs and ham while reading the Dr. Seuss book to your kids or dye your pancakes green just for fun. For lunch, try serving up a buffet of green foods – broccoli, celery, salad, guacamole, and grapes. Wash it all down with some green juice. Who knows? Maybe your child will try some new foods trying to get good luck on St. Patty’s Day.
Set a leprechaun trap
The night of the 16th, have your kids set a leprechaun trap using a box or laundry basket. Put gold coins inside to attract your leprechaun, but remember, leprechauns are very sneaky and do not like to be seen. In the morning, your child may awake to see that the leprechaun has taken their gold coins and left them a small gift or treat.
Have you heard? Slime is all the rage. This borax-free recipe is great to squish and stretch. Get the instructions: littlebinsforlittlehands.com
St. Patrick’s Day Math
Don’t let your brain turn to green mush. Play this fun St. Patty’s math game with the kids. Play it here: coolmath-games.com
Children with Special Needs
•affords a sense of belonging
• to the diverse human family
• provides a diverse
stimulating environment in
which to grow and learn
• evolves in feelings of being a member of a diverse community
• enables development of
• provides opportunities to
• develop neighborhood
• enhances self-respect
• provides affirmations of
• provides peer models
• provides opportunities to be
educated with same-age
provides opportunities to experience diversity of society on a small scale in a classroom
develops an appreciation that everyone has unique and beautiful characteristics and abilities
develops respect for others with diverse characteristics develops sensitivity toward others’ limitations
develops feelings of empowerment and the ability to make a difference increases abilities to help and teach all classmates develops empathetic skills provides opportunities to vicariously put their feet in another child’s shoes
• helps teachers appreciate the diversity of the human family
• helps teachers recognize that all students have strengths
• creates an awareness of the importance of direct individualized instruction
• increases ways of creatively addressing challenges
• teaches collaborative problem solving skills
• develops teamwork skills acquires different ways of perceiving challenges as a result of being on a multi-
• enhances accountability
• combats monotony
• promotes the civil rights of all individuals
• supports the social value of equality
• teaches socialization and collaborative skills
• builds supportiveness and interdependence
• maximizes social peace
• provides children a
miniature model of the democratic process
Benefits of Inclusion
Inclusion: Maximizes Individual Growth and Builds a Sense of Community
• enhances appreciation for the diversity of the human family
Source: “Creative Educators at Work: All Children Including Those with Disabilities Can Play Traditional Classroom Games,” by Donna Raschke, Ph.D., and Jodi Bronson, Ed.S., 1999 http://www.uni.edu/coe/inclusion/philosophy/benefits.html
Jack Wilson has attended every conference that Families for HoPE has conducted, and he has been busy today making phone calls to make sure his friends save the date for the 2020 Family Conference on Holoprosencephaly!
Please watch this video of Captain Jack in snowy Wisconsin calling his friend Brianna in New Jersey to share the exciting news with her.
Our friends at Great Wolf Lodge in Mason, Ohio loved our HPE families so much in 2018 that Families for HoPE has decided to return! Save the dates of June 14-17, 2020! We have informed the teams at the Carter Centers and the NIH, and they are excited to be joining us all once again!
Additional details will be announced in the weeks to come regarding registration fees, volunteer opportunities, and more!
*Alobar, in which the brain has not divided at all, is usually associated with severe facial deformities.
*Semilobar, in which the brain’s hemispheres have somewhat divided, causes an intermediate form of the disorder.
*Lobar, in which there is considerable evidence of separate brain hemispheres, is the least severe form. In some cases of lobar holoprosencephaly the baby’s brain may be nearly normal.
An IEP is the individualized education plan, a document written for a child with a disability that identifies needs, sets goals and lists services to insure optimal educational and vocational outcomes. Often the IEP process can be intimidating and overwhelming to parents. The following will help parents become engaged participants in the development and implementation of an effective IEP.
Ask clarifying questions
• Ask participants to clarify education jargon.
• Make sure you completely understand your child’s actual diagnosis.
• Ask clarifying questions about start dates, length of services, and the procedure for receiving the appropriate accommodations.
• During each meeting, be sure to ask questions about the IEP goals that have been set and whether they are being met. If your child has not met the goals, don’t be afraid to ask what the next steps are toward meeting the goals and whether the goals should be revised.
Set Goals as a team
• Ensure that you understand, agree with, and have contributed toward the goals set for your child. For instance, during one of my daughter’s IEP meetings, I discussed my child’s quiet personality and mentioned that she needed a speech therapist who would understand the importance of developing a relationship with her before proceeding with the implementation of the goals. You are your child’s first teacher. The knowledge you have about your child should be shared with and welcomed by the IEP team in order to achieve success.
• Be sure that you, the assigned specialist, and your child’s classroom teacher are partners, working toward the same goals, and that the accommodations and services carry over into the classroom and into the home. During the IEP meeting, ask questions to ensure that all parties involved set specific dates to collaborate with one another periodically throughout the academic school year.
Understand the IEP Process and Know Your Rights.
It is of paramount importance to read up on the IEP process, become familiar with IDEA (Individuals with Disabilities Education Act), and understand your rights as a parent. In addition to studying the law, many parents seek advice from an advocate and network with well-informed parents who have first-hand experience with the IEP process in their school district.
Make All of Your Requests in Writing
All requests should be made in writing to create a documentation trail that provides a history of the child’s academic needs and requests to the school district (e.g., requests for an IEP meeting, an assessment of any kind, or a classroom placement recommendation). It also allows you to state your requests in your own words. In addition, ask the IEP committee to record these written requests as part of the minutes in an IEP meeting. The IEP committee can accept or deny these requests. If the committee denies the requests, then they must follow the procedural safeguards in IDEA and provide written notice of why they are denying your request. If the request is not documented in writing, the school district is not required to provide the service. (Be Familiar with Prior Notice of the Procedural Safeguards (34 CFR 300.503))
The Legend of St. Valentine
The history of Valentine’s Day–and the story of its patron saint–is shrouded in mystery. We do know that February has long been celebrated as a month of romance, and that St. Valentine’s Day, as we know it today, contains vestiges of both Christian and ancient Roman tradition. But who was Saint Valentine, and how did he become associated with this ancient rite?
The Catholic Church recognizes at least three different saints named Valentine or Valentinus, all of whom were martyred. One legend contends that Valentine was a priest who served during the third century in Rome. When Emperor Claudius II decided that single men made better soldiers than those with wives and families, he outlawed marriage for young men. Valentine, realizing the injustice of the decree, defied Claudius and continued to perform marriages for young lovers in secret. When Valentine’s actions were discovered, Claudius ordered that he be put to death.
Did you know? Approximately 150 million Valentine’s Day cards are exchanged annually, making Valentine’s Day the second most popular card-sending holiday after Christmas.
Other stories suggest that Valentine may have been killed for attempting to help Christians escape harsh Roman prisons, where they were often beaten and tortured. According to one legend, an imprisoned Valentine actually sent the first “valentine” greeting himself after he fell in love with a young girl–possibly his jailor’s daughter–who visited him during his confinement. Before his death, it is alleged that he wrote her a letter signed “From your Valentine,” an expression that is still in use today. Although the truth behind the Valentine legends is murky, the stories all emphasize his appeal as a sympathetic, heroic and–most importantly–romantic figure. By the Middle Ages, perhaps thanks to this reputation, Valentine would become one of the most popular saints in England and France.
What is person centered planning?
A person centered plan can help those involved with the focus person see the total person, recognize his or her desires and interests, and discover completely new ways of thinking about the future of the person.” — Beth Mount & Kay Zwernik, 1988
Person Centered Planning is an ongoing problem-solving process used to help people with disabilities plan for their future. In person centered planning, groups of people focus on an individual and that person’s vision of what they would like to do in the future. This “person-centered” team meets to identify opportunities for the focus person to develop personal relationships, participate in their community, increase control over their own lives, and develop the skills and abilities needed to achieve these goals. Person Centered Planning depends on the commitment of a team of individuals who care about the focus person. These individuals take action to make sure that the strategies discussed in planning meetings are implemented.
To look at an individual in a different way.
To assist the focus person in gaining control over their own life.
To increase opportunities for participation in the community.
To recognize individual desires, interests, and dreams.
Through team effort, develop a plan to turn dreams into reality.
How do you know it’s person centered planning?
• There is a guiding vision evident
• It is rooted in respect for the person and a commitment to build inclusive communities
• Family members and friends are full partners
• The focus is on developing capacities
• Hopeful action happens
• Listening and learning continue
There are a variety of planning formats including:
• personal future plan
• One page Descriptions/One page Profiles
• Person centered descriptions/Essential Lifestyle planning
• Group action
Martin Luther King, Jr., Day, in the United States, holiday (third Monday in January) honouring the achievements of Martin Luther King, Jr. A Baptist minister who advocated the use of nonviolent means to end racial segregation, he first came to national prominence during a bus boycott by African Americans in Montgomery, Alabama, in 1955. He founded the Southern Christian Leadership Conference in 1957 and led the 1963 March on Washington. The most influential of African American civil rights leaders during the 1960s, he was instrumental in the passage of the Civil Rights Act of 1964, which outlawed discrimination in public accommodations, facilities, and employment, and the Voting Rights Act of 1965. King was awarded the Nobel Prize for Peace in 1964. He was assassinated on April 4, 1968.
Legislation signed in 1983 marked the birthday of the Rev. Dr. Martin Luther King, Jr. as a federal holiday. In 1994, Congress designated the Martin Luther King Jr. Federal Holiday as a national day of service and charged the Corporation for National and Community Service (CNCS), the federal agency that leads service and volunteering, with leading this effort. Each year, on the third Monday in January, the MLK Day of Service is observed as a “day on, not a day off.” MLK Day of Service is intended to empower individuals, strengthen communities, bridge barriers, create solutions to social problems, and move us closer to Dr. King’s vision of a “Beloved Community.”
• All children can learn
• All children can attend age appropriate educational classes in local schools
• All children can receive appropriate education
• All children receive a curriculum/extra curricular activities that meet needs
• All children benefit from collaboration
Inclusion is the educational practice of educating children with disabilities in classrooms with children without disabilities.
Set the bar high, it’s ok to fail and not reach the bar, but it’s not ok to set the bar low and reach it and give up
NIH Study on Environmental Determinants of Holoprosencephaly
We understand only a fraction of the causes of holoprosencephaly and what
leads to the wide spectrum of clinical features seen in patients with
holoprosencephaly. In this environmental study, we are trying to better
understand the different factors that can contribute to holoprosencephaly and
its presentation that often varies from patient to patient.
What does the study entail?
Filling out out a 45-minute online survey
What does the survey ask about?
The survey asks about your pregnancy and the three months before
pregnancy. Please go to http://hope.ctss.nih.gov to get more information.
We are actively recruiting to reach our study goal of 200 participants!
If you are interested in filling out the survey:
*There is no compensation for this study
Want to join us in supporting a good cause? This #GivingTuesday We are raising money for Families for HoPE, Inc. and your contribution will make an impact,
Click on this link to donate:
Families for HoPE annual Halloween costume contest has begun!
Get in your entries!
1st prize $150
2nd prize $100
3rd prize $50