We Are All In This Together: Breaking Down Barriers and Creating Community for Parents of Children with Disabilities

A blog post written by Diane Cooper-Gould, Parent & Child Advocate

I distinctly remember the awkward feeling I experienced as the group of moms around me chatted about the adventures of their older kids while our youngest played at our feet.  Their children were in boy scouts, soccer, and advanced academics.  I just nodded, having no frame of reference and nothing to say. Or rather, I had too much to say and I didn’t want to ruin the light mood.  It seemed that my little family of four was further and further out of step with the other families around us.  I desperately wanted to connect, but how could I explain prolonged fights with a 7-year-old over brushing his teeth, or the endless bedtime ritual needed to soothe my agitated child who was unable to sleep? Surrounded by a group of friends that I had known for several years, I felt utterly alone.

I want to be clear, everyone was very nice.  I’m lucky in that.  But as I revealed more of my struggles, I felt the uncomfortable pauses, and I saw the pitying looks.  I began to feel judged over the disruptive behavior of my oldest child.  I felt increasingly like a failure and too exhausted and frazzled to be a good enough wife and mother. I felt desperately lonely and out-of-sync.  I wondered if I would ever again find a circle of people with whom my little family would fit?

I decided I had to.  I just had to.

As therapy and doctors’ appointments increased, so did my time in countless waiting rooms.  I noticed that I felt surprisingly connected to the other haggard parents apologetically corralling their upset children and distracting them with iphones while attempting to fill out yet another endless stack of intake papers.  I’d overhear the frazzled conversations with the receptionist about insurance coverage and copays. We’d catch each other’s eyes and then share a smile and a word of understanding. Those brief exchanges were like a balm to my soul.  The endlessness, the exhaustion, the waiting, the mounting debt, the fear, the loneliness, they GOT IT.

It occurred to me that here had to be a way to bring us, the weary and the war-torn waiting room parents together. And thus, I was inspired to start the special needs parent support group that I have now been running for 7 years. What started as a little online group of 13 people is currently running strong with over 260 members.

Over the years, I have found connection and built community by creating a variety of groups including social groups, artistic groups and advocacy groups. Most recently, I co-founded and have been President of Fairfax County Special Education PTA in Fairfax County, VA. We are a non-profit organization that advocates and provides support for the over 26 thousand students with disabilities in Fairfax County Public Schools, their families and the professionals who work with them.

I have learned so many lessons during my years of creating community through group-building.  I have learned about what works and what doesn’t, and the skills needed to start, grow and keep a community thriving over time. I’ve learned this through trial and error and my life has been hugely enhanced for the better along the way.

I still feel lonely sometimes, I think we all do. But I don’t feel lonely all the time anymore.  And I know that I have a community that I can call on when I need to be seen, heard and understood.  Some of these people that I likely would not know otherwise are now my closest friends and colleagues. Quite unexpectedly, these communities I have made have opened up worlds of opportunity for me and for others. They have inspired new avenues of thought, adventure and career possibilities for me as well as friendship, fun and hope.

My mission now is to teach other parents how to do the same.  I want every parent to have a community to reach out to – to laugh with, to cry with, to advocate with, and with whom to share knowledge.  None of us should feel alone and isolated.  We are in this together.

Please join me on May 9, May 23 and June 6, 2019 for a 3-part Webinar Series hosted by PEATC and The Virginia Department of Education during which, I will teach you how to cultivate a community of support tailored to your needs.

Part One: Defining your Community of Support will air live at noon on Thursday, May 9.

Part Two: Getting Started: Creating and Launching Your Community of Support will air live at noon on Thursday, May 23.

Part Three: Sustaining and Growing Your Community of Support will air live at noon on Thursday, June 6.

I hope you will join us!  I look forward to building community with you.

**To register for these webinars, please register below: 

Thursday, May 9th: https://zoom.us/webinar/register/WN_tuEDfcOSQiaIrOgA1lkTEg 

Thursday, May 23rd: https://zoom.us/webinar/register/WN_YfIZXzWdRki3WSbiaAUtxg 

Thursday, June 6th: https://zoom.us/webinar/register/WN_hPb6vpwNR0KnXufxbZKdNQ

 

 

VA Superintendent Memos – Jan. 18, 2019

 

On Friday, January 18, 2019, our Virginia Superintendent released a number memos found here:  http://www.doe.virginia.gov/administrators/index.shtml

 

This week we would like to draw your attention to Memo

• MEMO 019-19
  Opportunity to Comment on an Amendment to Virginia’s Every Student Succeeds Act of 2015 (ESSA) State Plan (Word)

Summary:  This memo lets the public know there is an opportunity to provide public comment on a very specific definition amendment on Virginia’s ESSA Plan.  The state school board will be approving a definition for the term “ineffective teacher” to be used in the plan language.

Comments may be submitted electronically by Friday, March 22, 2019, to ESSA@doe.virginia.gov. Comments may also be presented in person during the Board of Education Business Meetings on Thursday, January 24, 2019, and on Thursday, March 21, 2019. The meetings will convene at 9:00 a.m. in the Jefferson Conference Room, 22^nd floor, James Monroe Building, 101 N. 14^th Street, Richmond, Virginia. Speakers intending to present comment are encouraged to contact Sonya Broady, Secretary, Office of Board Relations, at sonya.broady@doe.virginia.gov to be placed on the speaker list.

• MEMO 017-19
  School Board Policies on Concussions in Students (Word)
  • Memo 017-19 Attachment A: Virginia Board of Education Guidelines For Policies on Concussions in Students (Word)

Summary:  Each school division shall develop policies and procedures regarding the identification and handling of suspected concussions in students that address the academic needs and gradual reintroduction of cognitive demands for students who have been determined to have a concussion.

• MEMO 013-19
  Nominations for the 2019 Standards of Learning Special Test Forms Review Committee (Word)

Summary:  The Virginia Department of Education is accepting nominations through March 8, 2019, for participation in the 2019 Standards of Learning (SOL) Special Test Forms Review Committee.  You are invited to identify educators in your school division for this committee. Approximately twelve members will be selected.  The Special Test Forms Review Committee will be responsible for reviewing SOL test items on the braille and large-print test forms for students who are visually impaired. Committee nominees should be educators with expertise in the instruction of students with visual impairments and experience with the administration of braille and large-print test forms.

Data Helps Start School Conversations

Data can empower parents and help start school conversations.  Check out this short video produced by the Data Quality Campaign.

Link to full article:  https://dataqualitycampaign.org/resource/data-empowers-parents/

VA Superintendent Memos – Jan. 11, 2019

 

As promised, PEATC will be highlighting recent Superintendent Memos that are released each Friday.  On Friday, January 11, 2019, our Virginia Superintendent released a number memos found here:  http://www.doe.virginia.gov/administrators/index.shtml

 

We would like to draw your attention to MEMO 006-19
Virginia is for Learners Innovation Network: Profile of a Virginia Graduate Implementation 

Please follow this link to access the full memo:  006-19 (1) pdf

Except from Memo 006-19

“Virginia Department of Education partners are engaged in providing professional learning across the Commonwealth to transform curriculum, assessment, and instruction consistent with the expected outcomes of the Virginia SOLs and the 5 Cs (collaboration, communication, critical thinking, creativity, and citizenship.)

This next implementation phase will establish up to 20 Lead Innovation teams, the first of three annual cohorts, representing either a single division or collaborative divisions to begin initial formation of a Virginia is for Learners Innovation Network. Within three years, this statewide network will include innovation practices and strategic actions from all Virginia divisions.”

To learn more about this work please visit:  https://www.vascl.org/index.php/overview-virginia-is-for-learners-innovation-network

Please follow this link to access the full memo:  006-19 (1) pdf

 

Virginia Superintendent Memos

Hey Parents – Did you know that on Fridays any Superintendent memos for the week are released?

You can find an archived list here:  http://www.doe.virginia.gov/administrators/index.shtml

What are Superintendent memos?

According to Virginia Department of Education, Superintendent Memos are:   “Weekly memoranda from the superintendent of public instruction are the means by which the Virginia Department of Education communicates official information to the commonwealth’s school divisions. Superintendent’s memoranda are posted on Fridays.”

And why is it important to me?

When our state department of education deems it necessary to document information and send it to our districts in the form of a memo, it is usually new or important information, guidance or opportunities that stakeholders all over Virginia should or need to know. It is sent to the district superintendents and disseminated to school principals, and posted for the public, you and me, to access.  While not every memo is specific to special education families, many are and can be helpful as we gather resources.

Moving forward in 2019, PEATC will be highlighting Superintendent Memos, sometimes called Supts. Memos relevant to our community on a weekly, monthly or as they are released basis.

As we look forward to the coming year of memos, we thought we would review some of the top 2018 memos that our community of special education families might find interesting.  The 13 memos highlighted are just a few of the over 300 memos that were sent out in 2018.

COMMONWEALTH of VIRGINIA

Department of Education

Superintendent Memos Highlights for 2018

Note – Links to memos below are direct links or a link to the VDOE site where memos can be searched by date or memo number.

 

Jan 12, 2018 – MEMO 002-18 – Compliance Reminders Under the Individuals with Disabilities Education Act- http://www.doe.virginia.gov/administrators/superintendents_memos/2018/002-18.shtml

March 16, 2018 – MEMO 055-18 – Revisions to AIM-VA Resources for Students with Print Disabilities – http://www.doe.virginia.gov/administrators/superintendents_memos/2018/055-18.shtml

March 30, 2018 – MEMO 062-18 – Guidance for the IEP/504 Team for the Read Aloud Accommodation Determination for the Standards of Learning Reading Test/End of Course Test – http://www.doe.virginia.gov/administrators/superintendents_memos/2018/062-18.shtml

April 27, 2018 – MEMO 105-18 – Virginia Early Childhood Inclusion Guidance Document –  http://www.doe.virginia.gov/administrators/superintendents_memos/2018/105-18.shtml

April 27, 2018 – MEMO 100-18 – Implementation of the Virginia Alternate Assessment Program for 2018-2019 – http://www.doe.virginia.gov/administrators/superintendents_memos/2018/100-18.shtml

Oct 26, 2018 – MEMO 297-18 – Every Student Succeeds Act of 2015 (ESSA) – Approval of State Plan Amendment and Release of U. S. Department of Education (USED) Guide for Parents –http://www.doe.virginia.gov/administrators/index.shtml

Oct 26, 2018 – MEMO 295-18 – Training Opportunity – Critical Decision Points for Families of Children with Disabilities – http://www.doe.virginia.gov/administrators/index.shtml

Nov 2, 2018 – MEMO 310-18 – Special Education Requirements Under the Workforce Innovations and Opportunity Act (WIOA) – http://www.doe.virginia.gov/administrators/index.shtml

Nov 30, 2018 – MEMO 322-18 – Virginia’s Special Permission Credit Accommodation for Locally Awarded Verified Credit – http://www.doe.virginia.gov/administrators/index.shtml

Nov 30, 2018 – MEMO 320-18 – Early Childhood Education Leaders Communities of Learning for Inclusive Programs – http://www.doe.virginia.gov/administrators/index.shtml

Nov 30, 2018 – Memo 320-18 – Attachment A: Early Childhood Education Leaders Communities of Learning for Inclusive Programs Application – http://www.doe.virginia.gov/administrators/index.shtml

Dec 14, 2018 – MEMO 340-18 – Individuals with Disabilities Education Act Maintenance of Effort (IDEA MOE) Requirements for School Divisions 2017-2018

• Memo 340-18 Attachment A: IDEA MOE Guidance Document
• Memo 340-18 Attachment B: IDEA MOE Application User’s Manual

http://www.doe.virginia.gov/administrators/index.shtml

Dec 21, 2018 – MEMO 343-18 – Update on Virginia Department of Education Study of Special Education Regional Programs  –  http://www.doe.virginia.gov/administrators/index.shtml

 

CADRE Hosts New Webinar on Self Care

Self-Care Strategies for Families with Children with Disabilities

Presented by: CADRE

January 9, 2019 – 10:00am – 11:15am

Please note: Time is Pacific

About the Webinar: Self-care for the caregiver of a child with disabilities is a complicated topic that fellow caregivers find frustrating. The reality is simply most of us cannot fathom having the time or the capability to address our own needs ahead of a child with complex needs. This presentation encourages us to redefine what self-care really means for the parent of a child with disabilities.

For more information visit CADRE:

https://www.cadreworks.org/events/self-care-strategies-families-children-disabilities?fbclid=IwAR1-SwN8e44fvzD9HppePRPUfcBCsWtiCR6R6SCbPBk1DndBQEpn_haEdTg

Getting Ready for When Your Teen Reaches the Age of Majority: A Parent’s Guide

Age of majority is the age when children legally become adults. At this time, they gain the rights of adults, which include the right to vote, marry, apply for a credit card, make medical and financial decisions for themselves, sign contracts, live independently, and much more. In most states, the age of majority is age 18.

We invite you to read more here:  https://www.parentcenterhub.org/age-of-majority-parentguide/

 

Social Security Benefits to Increase in 2019

Posted on October 11, 2018 by Jim Borland, Acting Deputy Commissioner for Communications

Each year we announce the annual cost-of-living adjustment (COLA). Usually, there is an increase in the Social Security and Supplemental Security Income (SSI) benefit amount people receive each month, starting the following January. By law, federal benefits increase when the cost of living rises, as measured by the Department of Labor’s Consumer Price Index for Urban Wage Earners and Clerical Workers (CPI-W).

The CPI-W rises when prices increase for the things the average consumer buys. This means that when prices for goods and services we purchase become more expensive, on average, the COLA increases monthly benefit levels and helps you keep up with the changing cost of living.

As a result, more than 67 million Americans will see a 2.8 percent increase in their Social Security and SSI benefits in 2019.

Read more here:  https://blog.ssa.gov/social-security-benefits-to-increase-in-2019/

 

Structured Literacy Course For Parents and Educators

Registration is live! Check our course page for more information and how to register!

via Structured Literacy Course For Parents and Educators

Virginia’s Definition of School Readiness

Virginia’s Definition of School Readiness

“School readiness” describes the capabilities of children, their families, schools, and communities that will best promote student success in kindergarten and beyond. Each component – children, families, schools and communities – plays an essential role in the development of school readiness. No one component can stand on its own.

• Ready Children. A ready child is prepared socially, personally, physically, and intellectually within the developmental domains addressed in Virginia’s six Foundation Blocks for Early Learning: literacy, mathematics, science, history and social science, physical and motor development, and personal and social development. Children develop holistically; growth and development in one area depends upon development in other areas.
• Ready Families. A ready family has adults who understand they are the most important people in the child’s life and take responsibility for the child’s school readiness through direct, frequent, and positive involvement and interest in the child. Adults recognize their role as the child’s first and most important teacher, providing steady and supportive relationships, ensuring safe and consistent environments, promoting good health, and fostering curiosity, excitement about learning, determination, and self-control.
• Ready Schools. A ready school accepts all children and provides a seamless transition to a high-quality learning environment by engaging the whole community. A ready school welcomes all children with opportunities to enhance and build confidence in their skills, knowledge, and abilities. Children in ready schools are led by skilled teachers, who recognize, reinforce, and extend children’s strengths and who are sensitive to cultural values and individual differences.
• Ready Communities. A ready community plays a crucial part in supporting families in their role as primary stewards of children’s readiness. Ready communities, including businesses, faith-based organizations, early childhood service providers, community groups and local governments, work together to support children’s school and long term success by providing families affordable access to information, services, high-quality child care, and early learning opportunities.

Superintendent’s memo released June 29, 2018 

Virginia Kindergarten Readiness Program

http://www.doe.virginia.gov/administrators/superintendents_memos/2018/167-18.shtml

For more information about VKRP, Virginia Kindergarten Readiness Program please visit:  http://www.vkrponline.org/