Category: P2P

‘Tis the Season….For Taking Care of Ourselves!

by | Dec 19, 2017 | P2P

‘Tis the Season….For Taking Care of Ourselves!

‘Tis the Season…For Taking Care of Ourselves!

Whether it’s religious, cultural, or community, December is the month of gatherings and celebrations.  Although it is a joyful time, our stress levels can go soaring!  Lately, I’ve been contemplating:  Why is it so hard for us to take care of ourselves when we are so good at taking care of others?

We know that caregivers need to find some balance but where in the midst of all the season’s busyness do we take care of ourselves?  I certainly don’t claim to have all the answers, but I will share with you a tip that my husband and I both use. We are both caregivers for our multiple kids with disabilities, have busy jobs outside that, and other commitments. We have to be pretty intentional to take time for self-care.  Our solution?

Take A Mini-Vacation!

What do I mean by that? Well, I mean be intentional about self-time, whether that’s 10 minutes, 30 minutes, 2 hours or more.  When you are intentional about those precious minutes or hours, you tell yourself, ‘I’m on vacation’.

That means for this period of time, you will be NOT checking your email, NOT available for homework questions, NOT taking a call/text/message from your boss, your spouse, your teenager or your mother!  (Exception:  A family member is having an emergency.  For us an emergency is defined as life or limb – lots of blood spewing, a bone poking out, or someone turning blue—in other words, if you need an ambulance, ok. Otherwise, no, I’m not available right now)

This requires some discipline. Don’t feel bad if it takes a while to re-educate those in your circle to what you being temporarily unavailable means.  Stick with it and you’ll feel less and less guilty, and they will start to get it.

So, what can you do on your mini-vacation? Truly it is up to you and your imagination, but here are some things that I’ve done:

Got 10 Minutes?

  • Spa time: Go into the bathroom, close the door, and turn on the hot water to start steaming up the room. Light a candle if you want. Don’t bring your phone in, but put on music the old fashioned way so you’re not tempted to answer a call. Choose your favorite scrub or lotion or whatever pamper me product you want and generously use it on yourself! I make my own exfoliate with coconut oil, Kosher salt, and lavender.
  • Virtual trip: Did you know that many Libraries allow you to check out unlimited subscriptions to magazines electronically? Zinio is the app for iPhones. With 10 minutes, whether you like to ski, knit, cook, hike, horseback ride or sharp shoot, you can probably find a digital magazine and temporarily ‘vacation’ in your hobby.

Got 30 minutes?

  • Boil the water and brew a cuppa. Relax and sip. Sit down in a chair and read an actual book. Or day dream. Or meditate. Or….
  • Step outside, if someone is there to watch the kids or they’re in school, or you’re on your lunch break at work, and walk. Near trees or water if you can, but anywhere will do. Pay attention to your surroundings and look for beauty or unusual objects. Breathe deep, focus on your breath, your footsteps and the things you are observing. Some folks call this mindfulness, some call it walking meditation. I call it a 30 minute vacation.

Got 2 hours?  This one is like pure luxury!  How often do we get 2 hours? Not very often. But be intentional when you do.

  • For me, I have taken one evening a week to sing with a choir. It’s time that I suppose you could say is volunteering since it’s a church choir and we sing most Sundays. But it’s a time that gives me great joy. I love to sing and it’s time that is completely separate from my working and parenting world.
  • Meeting a friend for lunch or coffee is fun. Choose wisely so that this time is truly a break…not more caregiving!
  • Spending time alone has the benefit of readjusting my internal barometer to face the next family or work challenge to come. Massage, nails done, hair, all nice things but most of the time the budget says no. But when the budget says yes? Then splurge on you this time.
  • Go to a museum, the zoo, an art gallery—all by yourself. Some libraries offer free passes to these venues, and if you are in the metro area, there are free days. Sometimes it’s just relaxing to go by myself to one of those places, and see the things that I want to see. Or go to your local library to look at their public art or check out a book on something you enjoy. Love Art but can’t actually leave or travel that far? You can do a virtual tour of many museums around the world online.
  • Plan a quiet elegant meal for yourself, or for you and your significant other. When my children were little, and very medically fragile, finding babysitters just didn’t happen very often. So periodically my husband and I would cook a regular meal for the kids and prep a fancy meal for ourselves for later. We would try to put the kids to bed early.  Then we’d cook together the fancy meal. We happen to like to cook together but you could get take out with the same effect. I put up a card table in whichever room was the neatest with the fewest toys (some years that was the living room, some years our bedroom) put on a table cloth, set it with china and a candle, add some music and voila–mini vacation.

Whatever gives you joy, rest, and energy, try to be intentional about some time to do that during this busy season.  Try to find at least 10 minutes a day for yourself, 30 minutes a week just for you, and if you can swing it, sometime over these next few weeks grab those 120 minutes and savor some time to take care of yourself.  We know that taking care of ourselves helps us to be better caretakers for others and gives us the strength to last through this journey of parenting our sons and daughters.

 

Another great way to take care of yourself?  Stay connected to other parents who understand!  It’s free and easy to join Parent to Parent of Colorado!  Our community of 4000 parents across Colorado supports each other on the journey of parenting our sons and daughters with disabilities and special health care needs. 

You’ll get access to our Online Parent Support Group, connected to a trained Support Parent for one-on-one support (upon request) and you’ll find hundreds of resources on our P2P-CO website!

 

Renee Walbert is a mom to three adult children and an Oma to one beautiful granddaughter. She is also a deacon, community advocate, singer, policy guru, blogger, and a coordinator at Parent to Parent of Colorado. Renee coordinates the writers for our Parenting with Altitude blog and welcomes your submission of a blog for publication!

 

Editor’s Note:  As we move through this journey of parenting our sons and daughters, we are thankful for those parents who have come before us and those who walk beside us!  The efforts of Parent to Parent of Colorado are sustained by your involvement and donations from our community. 

Please help us Celebrate 20 years of supporting parents by making your contribution to https://www.coloradogives.org/P2PCO

 

 

A Season of Gratitude and Thankfulness: Small Town Charm

by | Dec 11, 2017 | P2P

A Season of Gratitude and Thankfulness: Small Town Charm

A Season of Gratitude and Thankfulness:  Small Town Charm

Living in a town with a population of less than 2,000 people has its challenges. Sometimes I’d give anything for pizza delivery, and I get frustrated that the nearest Kohl’s is three hours away. There are days when I wish I could just go and buy milk without seeing someone I know.

Still, there are benefits to living in a small community. There’s no mail delivery in my hometown, but if I forget the keys to my post office box, the postmaster will happily retrieve my mail for me without even having to ask for my name or box number.

The town I live in has no stop lights, but there is an emergency signal. There’s also a grocery store, three churches, a couple of restaurants and the county fairgrounds. When I moved to this town to take a teaching job 23 years ago I didn’t think I would stay forever, but I met my husband, we started a family, built a house and put down roots here.

Lately I’ve been feeling especially thankful to be raising my kids in a small town, especially my eight year-old son, Lewis, who has Down syndrome and autism spectrum disorder. All it takes is a trip around town to remind me why I am glad we live here.

Lewis loves to go to the grocery store. As soon as we enter Lewis looks for the store owner, Mr. Bill, who always picks him up and hugs him. Then Lewis pushes his kid-size cart through the store as we pick out our groceries. Sometimes when I think he’s following behind me I turn around to find that he’s run off to see one of the employees, who greets him by name. We stop at the deli, where kids get a free cookie, and Mr. Bill comes around to help us out when we are done. He makes sure to put something light in a bag for Lewis so he can help carry the groceries to the car.

In the parking lot, and really anywhere we go in town, it’s common to hear kids’ voices calling out, “It’s Lewis! Hi, Lewis!” We joke that he is a celebrity here.

My kids attend school in the local school district, which has a total student population of less than 500. What it lacks in size it makes up for in small class sizes and dedicated teachers.

Lewis started in the district’s inclusive preschool program shortly after his third birthday, and he has gone to school with his typical peers ever since. There was never any question about it. All kids are included, with para-professional support when needed, because there is no self-contained classroom option. It has brought Lewis a level of acceptance that I never could have imagined.

Last month Lewis rode his adaptive tricycle in the homecoming parade, and in December he’ll be on stage with his classmates for the holiday program. He may not be able to sing many of the words, but he’ll be rocking side-to-side to the rhythm of the music, and everyone will clap for him.

Living in a Small Town has advantages and disadvantages, but it has brought Lewis a level of inclusion and acceptance that I never could have imagined. At least that’s the way it feels to this proud and thankful mom.

 

 

Editor’s Note:  As we move through this journey of parenting our sons and daughters, we are thankful for those parents who have come before us and those who walk beside us!  The efforts of Parent to Parent of Colorado are sustained by your involvement and donations from our community. 

Please help us Celebrate 20 years of supporting parents by making your contribution to https://www.coloradogives.org/P2PCO

 

 

Carrie Kleckler lives in northwest Colorado with her husband and three children. Her youngest son has Down syndrome and autism spectrum disorder. Carrie recently returned to teaching after 11 years as a stay-at-home mom, and is now working with preschoolers with special needs. She is the volunteer facilitator for the Northwest Colorado Chapter of the Rocky Mountain Down Syndrome Association, and she blogs about her parenting experiences at www.yourseamisshowing.wordpress.com
 

 

 

All supports provided to families are free, however we rely on generous donors like YOU to keep our program going strong! Donate today at: coloradogives.org/P2PCO

 

 

 

A Season of Gratitude and Thankfulness: Past, Present, Future

by | Dec 4, 2017 | P2P

A Season of Gratitude and Thankfulness: Past, Present, Future

A Season of Gratitude and Thankfulness:  Past, Present, Future

Looking back, It is hard to imagine how much has changed in 30 years.  30 Years ago our son was born, 10 weeks early spending over 5 months in the Neonatal Intensive Care Unit. I will never forget that first winter, those first 8 or 9 months when I was essentially trapped at home with a medically fragile, immune suppressed, adorable and very sick little boy and how isolated I felt.

The past…..

1987 Life was still pretty isolating.  No parent to parent organizations and it was hard to find support. Eventually my son was healthy enough to have therapy at a rehab center and I attended a group there.   No internet, no cell phones, and no social media. Mostly I was stuck at home.

1994 Pagers became affordable. I could have a life! I could go to the grocery store during the day while my medically fragile kids were in school and wasn’t stuck at home waiting by the phone for the calls that came, sometimes daily but at least once a week. I could have a job where I traveled around the region supporting other families with kids with special needs and my own children’s team could reach me! I was a big fan of pagers!

1996 Cell phones were starting to become more affordable for many families and I got one!  Still looking for ways that families could connect with one another. Support groups were fine, and I still attended them when I could find them and referred families. But could we do more?

1997 Parents gathered for the Summit at the Summit and Parent to Parent of Colorado (P2P-CO) was formed. The internet was growing and many pieces of the puzzle were starting to come together.  People had ideas of how to connect parents to a grassroots, organized group that could build inclusive communities, provide one another with information and emotional support and take constructive group action. Some forward thinking folks started exploring the idea of using personal computers to connect parents.

1998 The very first message was posted to the brand spanking new P2P-CO e-group which became Yahoo Groups listserv and is now our Online Parent Support Group.

1999 Two coordinators were hired as the first paid Parent to Parent staff.  Their primary function was creating and supporting groups of parents. At the same time, one of our coordinators started growing this unique new technology for supporting parents. I don’t remember when I posted the first time but I know by August of ’99 I was reading daily and often responding. The P2P-CO group became my lifeline. Being able to connect no matter the time of day or night meant so much to me!

Fast forward to the present…

2017 We are celebrating our 20th Anniversary of Parent to Parent of Colorado.  Through technology we are now connected with over 4000 families across Colorado and with a nation-wide network of Parent to Parent organizations.  Listservs are very old technology. Facebook and other social media platforms give everyone —  not just families with sons and daughters with disabilities — the ability to connect.

My heart is thankful everyday. For my family. For my larger disability family. For the technology that continues to be a tool to help me stay connected.  I will never forget that first winter and how isolated I felt.  At Parent to Parent, we hear almost daily, how support from another parent helps a new parent cope and feel less alone.  Life is so much better now.  The connections make a difference!

What will the future hold? 

As technology continues to change, one thing remains constant – parents need other parents in this journey of parenting our sons and daughters with disabilities and special health care needs.  Together, we continue to ask questions, give and receive advice, and vent when needed.  There is nothing like the connection with another parent who has “been there, done that” to support us in our journey!

 

Editor’s Note:  As we move through this journey of parenting our sons and daughters, we are thankful for those parents who have come before us and those who walk beside us!  The efforts of Parent to Parent of Colorado are sustained through the support from our community.  Donating on Colorado Gives Day makes us eligible for additional dollars through the Incentive Fund.   Please help us Celebrate 20 years of Supporting Parents by making your donation  at https://www.coloradogives.org/P2PCO

 

Renee Walbert is a mom of three adult children and an Oma to one beautiful granddaughter. She is a part of the past, present, and hopefully, future of Parent to Parent of Colorado. Renee writes frequently for Parenting with Altitude and coordinates the efforts of other authors. To submit your blog, contact her at: rwalbertp2p@abilityconnectioncolorado.org

 

A Season of Gratitude and Thankfulness: True Gratitude

by | Nov 23, 2017 | P2P

A Season of Gratitude and Thankfulness: True Gratitude

A Season of Gratitude and Thankfulness:  True Gratitude

Our society seems to push gratitude in a context of comparison:

  • Thank you for my health (that I’m not sick like that person)
  • Thank you for my family (that I’m not alone like that person)
  • Thank you for my home (that I’m not like that homeless person)
  • Thank you for food to eat (that I’m not starving like those children in Africa)

We see others that we judge to be less fortunate than us and use that as an opportunity to feel grateful.  What happens though, when your world falls apart and you find fewer and fewer people fall into that “less fortunate” category?  How do you still find gratitude in your heart when your world is crumbling?  How do we find gratefulness in the absence of health, family, and material possessions?

Perhaps we need a mind shift away from the “I’m so thankful I’m not like that person” to a place of genuine gratitude for the good and the bad and the way those together have formed our life.  Wesley’s birth, and subsequent disability, was not my plan.  I didn’t end up with the birth I wanted nor with a healthy baby.  I could say, “I’m so grateful he survived” which has definite truth to it, but what about the family whose baby didn’t survive?  What do they have to be thankful for?

True gratitude that can withstand the most challenging and heartbreaking situations imaginable comes from an acknowledgement that there is a higher purpose in all of this.  That the messy threads of our life are being woven together by a masterful Artist who sees the whole picture not our limited perspective.  That I can choose gratitude.

So today, even when it doesn’t always feel true, I choose to say:

  • Thank you for seizures
  • Thank you for smiles
  • Thank you for cerebral palsy
  • Thank you for community
  • Thank you for sickness
  • Thank you for progress
  • Thank you for suffering
  • Thank you for strength

Because the gratitude in my heart shapes my attitude towards my life.  I can’t change my circumstances but I can change my attitude towards them.  So today, I choose gratitude.

Editor’s Note:  As we move through this journey of parenting our sons and daughters, we are grateful for those parents who have come before us and those who walk beside us!  We’ve asked several P2P Members to share their thoughts on thankfulness and gratitude and we’d like to hear yours also! Email our group at Parents@P2P-CO.groups.io

 Want to become a P2P-CO Member?  It’s free and easy to JOIN US!

 

Megan Bowser is a mom of three little ones (5, 3, and 1), Army wife, and former math teacher. Her introduction to parenting was marked by her son’s brain injury and subsequent cerebral palsy diagnosis which has lead her on a journey to help him reach his highest potential and offer support to other families walking a similar journey.

 

Throughout the year we rely on generous donations like YOURS to keep our supports and services free for parents. Please donate today!

 

 

A Season of Gratitude and Thankfulness: For You, I am Thankful!

by | Nov 21, 2017 | P2P

A Season of Gratitude and Thankfulness: For You, I am Thankful!

A Season of Gratitude and Thankfulness:  For You, I am Thankful!

It’s been 4 years since we have embarked on this journey of parenting.  Expectations collided with the reality of life from the moment our darling daughter was born.  I remember you curling up next to me in disbelief while she was being prepped to be transported to a nearby hospital.  As we feared for her life and for our lives without her, I knew we are going to be okay.  The warmth of your tears landing on my shoulder and the quiet sounds of you attempting to breath filled my heart with the comfort I needed… together, we will be okay.

We watched our relationship morph into many different ones.  There are a lot of times when us as a couple takes the back seat to us as a family raising a child with special needs.  My heart has many things to say to you.  Today, I want to take the time to thank you…

 

Your support, commitment and compromise are unconditional.  We’ve had to take many difficult and life altering decisions that wouldn’t have been possible otherwise. For that, I am thankful.

You have been the rock I needed in this wild parenting adventure.  You make me a better person and a better mom. For that, I am thankful.

You are a perfect mix of centered and affectionate, kind and hilarious… always knowing how to put a smile on my face. For that, I am thankful.

You are the kind of dad I always knew you’d be… patient, loving and fun.  Seeing our daughter grow more and more attached to you every day is the greatest gift. For that, I am thankful.

You forever play an active role in our relationship… For you, I am thankful!

 

Editor’s Note:  As we move through this journey of parenting our sons and daughters, we are thankful for those parents who have come before us and those who walk beside us!  We’ve asked several P2P Members to share their thoughts on thankfulness and gratitude and we’d like to hear yours also!  Email our group at p2p-co@yahoogroups.org  

 

Want to become a P2P-CO Member?  It’s free and easy to JOIN US!

Carole Bakhos says, “The moment our daughter was born and rushed into the ICU, all my identities morphed into one… the mother of a sick child. Our journey with Yara helped us reach parts of ourselves we didn’t have to tap into before. We have experienced deep sorrows of the unknown future and intense happiness for every little accomplishment. Our perspectives have changed and none of the world’s troubles matter anymore. She is strong, happy, and healthy and she handles herself with such great self-confidence. We are so proud of everything she is and thankful that she has helped us become better people.” Carole, her husband, and daughter Yara, moved to Colorado last year and Carole immediately sought support from Parent to Parent of Colorado. Carole is a regular contributor to our Parenting with Altitude Blog, writing heartfelt letters to her daughter and now, to her husband.

 

 

 

 

 

A Season of Gratitude and Thankfulness: Counting my Blessings

by | Nov 15, 2017 | P2P

A Season of Gratitude and Thankfulness: Counting my Blessings

A Season of Gratitude and Thankfulness:  Counting my blessings

As mothers of sons and daughters with disabilities and special health care needs, we face daily challenges.  In our family’s world those include:   repositioning my 90-pound son (many times a day), g-tube feedings (at least 6 times a day), giving about 20 medications throughout the day and night, diaper changes (6 – 8 times a day).  In addition there is constant vigilance to insure our son is breathing well through his new tracheostomy.  We pack 3 bags to go with us whenever we leave the house.  We plan an extra 30 minutes time whenever we go, to account for loading and unloading the wheelchair and all the stuff.

BUT TODAY I would rather focus on my blessings.

Joshua has the most incredible smile and giggle, especially now that he has a new speaking valve for his tracheostomy.  Joshua’s smile is so infectious, perfect strangers can’t help but smile back.

We have 4 children who we are watching blossom into caring, productive, serving adults.  Ben and Laura are graduating from college this year, and Ben and Andrew are getting married.  We are glad to welcome Ashley and Charise to our family.

Daily, Joshua gets to see his grandma and grandpa, who always make him smile.

I have a wonderful job, caring for my son in our home, thanks to the family care giver act.  This allows our son to live at home in safety and surrounded by love and family.

I am grateful for the many parents of Parent to Parent of Colorado who have gone before me.  They willingly offer advice, encouragement, and wisdom.  Many have worked tirelessly on behalf of our children, and have made a difference in our laws and in our individual lives by being there to answer questions and encourage us.

We own a home that is accessible and meets our needs as a family, and we get to live in beautiful, colorful Colorado.

We have been blessed with hundreds of therapists, nurses, teachers, friends, and family who care for, teach, and communicate with our son every day.

Our family has been a part of 4 churches in the last 30 years where we have found good friends, good fellowship, been able to worship meaningfully, grow spiritually, been able to serve others, and have been embraced as a family with a child who has special needs.

I have a wonderful, loving, responsible, faithful, and Godly husband who is exactly the man I need every day.

Some days, it can be hard to see the blessings, because we spend so much of our time wrestling with diaper changes, or spending sleepless nights, or we are just plain worn out.

But every day, it is a good idea to see if we can all take just a few moments to think about all the many things we can count as our blessings; because if we do, I find that it can make the difference between a discouraging day and one where we can give thanks for the many blessings we all have.

Editor’s Note:  As we move through this journey of parenting our sons and daughters, we are thankful for those parents who have come before us and those who walk beside us!  We’ve asked several P2P Members to share their thoughts on thankfulness and gratitude and we’d like to hear yours also!  Email our group at p2p-co@yahoogroups.org   

Are You Connected?  It’s free and easy to Join P2P-CO!

 

Grace Hunter is a stay at home mom. She has a degree in Elementary Education. Currently she works as Joshua’s paid family caregiver. She and her husband, who is an engineer for Lockheed Martin, have 4 grown children. Joshua, the youngest, has CP and requires full time care. She lives in Littleton, CO. Grace enjoys crocheting, reading historical novels, quilting, working on photo albums. The Hunter family enjoys traveling to National Parks, and camping in the Colorado Mountains whenever possible.

 

 

Colfax Marathon

by | Nov 2, 2017 | Ability Connection, News, News

Help raise money for Ability Connection Colorado by joining us at this fun marathon for runners of all skill levels.

The Colfax Marathon offers a Marathon, Half Marathon, Urban 10 Miler, or run/walk 5k.
To register:    https://www.simpleracereg2.com/events/2018_colfax_marathon
Early registration ends January 24, 2018.

When you register, you’ll be asked: Do you (or your team) plan to raise funds or awareness for one of our charity partners? Use the drop down menu to select Ability Connection Colorado.

For more information about the Colfax Marathon, visit their website at this link: http://www.runcolfax.org/

A Glimmer of Hope? Why “Minimum Progress” is No Longer Acceptable for our Children

by | Nov 2, 2017 | P2P

A Glimmer of Hope? Why “Minimum Progress” is No Longer Acceptable for our Children

A Glimmer of Hope? 

Why “Minimum Progress” is No Longer Acceptable for Our Children

It has been 6 months since the United States Supreme Court issued its decision in a special education case, Endrew F. v. Douglas County Public Schools. In that case, the Supreme Court was tasked with deciding whether the student, Endrew F., received a free and appropriate public education (FAPE) as required by the Individuals with Disabilities Education Act (IDEA).

Endrew F. was a student at Douglas County Public Schools in the Denver-metro area. He has autism, and received service through an Individualized Education Program (IEP). An IEP is the plan that the parent and the school put together each year to define the specialized instruction, accommodations and modifications, and related services the child will need in order to get through the school day and learn. All IEPs have goals for the child. For example, Gracie’s goals include things like maneuvering her walker through doorways without having to be reminded about the wheels, and remembering to look around before she starts moving.

Endrew F.’s IEP had very minimalistic goals that he was meeting, but they did not bring him closer to the academic level of the other kids. He was falling more and more behind each year. In his fourth grade year, Endrew developed behavioral problems, which escalated through the year and became severe by the spring. The school and Endrew’s parents disagreed about how to best accommodate Endrew’s needs in the school environment. Eventually, Endrew’s parents withdrew him from the public school in April of the school year and enrolled him in a private school program, where he is now thriving.

This is where it gets interesting. Endrew’s parents billed the school district for the cost of enrolling Endrew in private school, arguing that he was denied a FAPE. The district, of course, did not pay. The parents engaged in the dispute resolution process, where the hearing officer determined that because Endrew was meeting his IEP goals he was receiving “some educational benefit” that was more than de minimus — more than nothing. The parents appealed, and the 10th Circuit upheld the hearing officer’s decision that because Endrew was making some progress, he was receiving a FAPE. The case made its way to the Supreme Court last fall and was heard in January, 2017.

The Supreme Court ruled that the “more than merely de minimus” standard did not go far enough to ensure that children with disabilities receive a free appropriate public education. The Court determined that schools must offer IEPs that are reasonably calculated to enable a child to make progress appropriate in light of the child’s circumstances. That means that schools can’t just put basic goals on the IEP and call it a day — they must develop goals that will help the child progress in school to the best of his or her capabilities.

 When I first learned about the Endrew F. case, I thought, “I may as well be hearing my own life story.” Like Drew, my daughter Sarah was removed by her school from her fourth-grade general education classroom. Nobody told us, her parents, for two months. Like Drew, Sarah’s increasingly risky behaviors at school coincided with minimal or no progress on IEP goals. And just like Drew’s parents, my husband and I pulled our child from public school and put her into an autism program where she finally met her basic preschool goals and continued to make significant, meaningful progress. The heart of the Supreme Court case was about finding the right words for clear standards. IDEA, is supposed to ensure that schools provide access to a free, appropriate public education (FAPE) and related services that fit our kids’ unique needs. But lower courts that have sided with the school districts argue that “some” educational benefit is enough for our kids. The school district in this case argued that it only need to meet a de minimus or bare minimum standard. For Sarah, this would have meant slipping on her shoes was “good enough” progress in six years, if you add in two years of preschool.

 

I find this whole debate ridiculous given that in 2017, there is still any argument that our children deserve less or barely more than zero results in their educational career. Isn’t it much more expensive for society to not teach them, and to pay for institutional care into their old age? For too long, society has shamefully accepted harmful, dismissive and derogatory limits on our kids’ abilities, even resisting granting them equal access into mainstream classrooms. But no one has a crystal ball to determine how far the human spirit and intellect can overcome its challenges, and clear legal standards with bite will force schools to keep up with scientifically proven methods that work.

Sarah is now in a public middle school with a wonderful special education teacher, excellent support staff and a supportive principal. These dedicated educators relish in Sarah’s quirks, but we are playing catch-up from years of neglect. Without proper guidance from the high court, such a luxury of confidence in our school for families like ours remains an ephemeral condition, which can evaporate as quickly as staff turnover. Now that we have a new standard for meaningful educational benefit, I hope this is the key to opening lines of honest communication with educators about what our kids need for their independence and growth (it’s also the key to avoiding future lawsuits). And I hope that schools will place a new “value” on the education of our children because our kids and their different ways of being are immensely and intrinsically valuable in a world that increasingly lacks humility, compassion and boundless love.  ~Written by Julie Marshall, Mom of Sarah

Why, you might ask, am I giving a detailed analysis of the Supreme Court’s decision? Well, there are a couple of reasons. First, I’m Gracie’s mom and I already knew about FAPE and IDEA and IEPs long before this case came down. That’s the world we live in, the world of special education and politely fighting with educators and schools. (Oh, I’m sorry, it’s called advocating.) And second, because there are many, many other parents and caregivers out there who also spend way too many hours advocating for their special needs children. It’s what we do.

The Endrew F. case provides a glimmer of hope for parents of children with unique learning needs. Because of Endrew F., schools have a little more accountability. It’s not just “take it or leave it” at the IEP meeting anymore — the schools are now obligated to provide an education that is reasonably calculated to help the child learn to the best of his or her ability. Parents should insist on IEP goals that are designed to push their children to their full potential and for regular progress reports to ensure these goals are being met.

As parents, we want what’s best for our children, regardless of their abilities. As Gracie’s mom, I want her to be challenged academically but accommodated physically so that she does not become exhausted from school and end up in the hospital. I will be much more conscientious of her IEP goals from now on, making sure they are designed to help her grow with her peers.  I am hopeful that the Endrew F. decision will become a well-utilized tool in every parent’s IEP toolbox, so that we can all work together with the schools to help our children learn and grow.  After all, that’s what we do….It’s called advocating, and we’re all experts at it.

Editor’s Note:  Do you want to dig into more information on this court decision?  We highly recommend the WrightsLaw website for extensive legal information about a variety of special education topics.  Their recent newsletter has multiple articles on the implications of the Endrew F. decision.

Susan Hoyt is the mother of Gracie and Jackson. Gracie, age 7, does not feel pain and is legally blind due to a rare disease called Posterior Column Ataxia with Retinitis Pigmentosa. Jackson, 9 ¾, is a wonderful little boy with no chronic medical conditions. Susan writes about her family’s journey on her blog, http://amazinggracie.net. They live in Arvada with their two dogs and their cat.
Julie Marshall is an active member in Parent to Parent of Colorado and has written multiple blogs for Parenting with Altitude. She is the founder of Brainsong, a nonprofit with a mission to open doors to the professional arts experience to families living with different abilities. www.brainsong.net

 

 

 

 

Tribute to Dr. Min Mehta, MD, FRCS

by | Oct 31, 2017 | Ability Connection, News, News

Remembering Dr. Min Mehta, MD, FRCS

Her global work as a pioneer in championing straight spines helped save the lives of countless babies with Progressive Infantile Scoliosis

For thousands of families across the world and for ACCO, 2005 was one of those remarkable times when we experienced a significant sea change in the treatment of very young children with a diagnosis of life threatening Progressive Infantile Scoliosis.

In 2001 we became acquainted with Heather Hyatt, mother of a beautiful four year old named Olivia, who initially reached out to us to help her find a preschool program for her precious child diagnosed with severe Progressive Infantile Scoliosis.  At the time, Olivia had already undergone halo procedures.  However, Heather never accepted that a single intensive, invasive and premature procedure of spinal fusion surgery was the only way to treat Olivia’s condition.  With courage and determination, Heather began an international search for a cure, and through her perseverance, her journey lead her to the extraordinary and brilliant Dr. Min Mehta, a Pediatric Orthopedic Surgeon from London.  We were unbelievably fortunate to have Olivia join our program and Heather has taught us that nothing is stronger than a parents love for their child.  Unfortunately, Olivia was too old to benefit from Dr. Mehta’s technique, but she has taught us all a lesson in what true strength looks like.  As many of you know, we lost Olivia in February of 2016, however, she will always be remembered in our hearts as the inspiration for the Infantile Scoliosis Outreach Program (ISOP).  Olivia and her story will not be forgotten.   

When Heather met Dr. Mehta, who suffered from juvenile scoliosis, she was pioneering a noninvasive procedure to cure vulnerable babies with Progressive Infantile Scoliosis.  Over the last 12 years, this initiative, spearheaded by Heather, became an established program of ACCO, which has developed into a global effort, spreading knowledge, defining better options for families and organizing free, hands-on training for hundreds of doctors and others on Mehta’s Growth Guidance Casting, resulting in thousands of babies being cured gradually without dangerous surgery.

Dr. Min Mehta left us in August 2017 and while there is no way to adequately express the heartfelt gratitude we feel, we understand how incredibly fortunate we were to have known her and what an honor it has been to work with her.  Dr. Mehta once said that, from the age of six, she had always wanted to be a doctor, and she faced enormous challenges, including a negative and dismissive perception of women in the medical field.  However, this gentle, non-invasive technique would not have been possible without her significant life’s work, and we know her enormous impact will continue to spread around the world.  Heather, as well as many others that knew her, have heard so many life changing and grateful stories from parents and the medical community about the unbelievable impact that Dr. Mehta has had.  She is considered the global authority on the only life threatening condition in the world of pediatric orthopedics. 

For her compassion and dedication to making the world a better place and for her legacy, which she has left for everyone that has been touched by Progressive Infantile Scoliosis, Dr. Mehta will be forever missed but will never be forgotten, nor will the lifesaving work that ISOP will continue to spread until no more children suffer like Olivia and many others with this devastating, painful and life shortening condition.

Why Do I Love Fall? Creativity Abounds for Our Family!

by | Oct 13, 2017 | P2P

Why Do I Love Fall? Creativity Abounds for Our Family!

Why Do I Love Fall?  Creativity Abounds for Our Family!

Fall is upon us.  Kids of all ages get excited about Fall festivals, trick-or-treating and especially, costumes!   Halloween can be a great time of year for kids with disabilities as it is inclusive of all kinds of kids, families, costumes and behavior.  However, sometimes it also challenges our creativity when it comes to accessible activities and costumes.

My  daughter, Izzy,  uses a wheelchair which can make accessibility a challenge.    Door to door trick or treating is out of the question in our neighborhood, but many communities offer trick-or-treat streets or trick-or-trunk.  These are great because they are very accessible.  Check out this list of activities for families in the Denver Metro Area for ideas.  If you live in other areas of Colorado, your local newspaper, a community Facebook page, or your child’s school may be good places to find out about fun family activities.

Many of you may experience uncomfortable looks and stares from other kids and even adults during the year, especially if your child’s disability is obvious or visible.  The great thing about Halloween, is that it is ok to stare.  And it actually makes for great opportunities for other kids to come up and approach our kids.  One of the ways to encourage interaction for our sons and daughters is a creative costume!

I’m sure we have all seen the elaborate costumes online that others have created for kids in wheelchairs.  We always try to make it a costume theme for the entire family. That way, my daughter, Izzy, is included in the family activity we are doing for the Fall.  Halloween is also a good time to create a costume that reflects your child’s special or unique interests.  For older children and teenagers who want to fit in with their peers, you can consider talking to friends about creating a theme that everyone can join.

I do enjoy making things and the wheelchair allows for being creative in my costumes.  My daughter has had easy to adapt costumes (witch, jellyfish) to more difficult and elaborate (Peanuts, Flintstones).  For some creative ideas about costumes for wheelchairs and strollers, check this out!  Read about sensory friendly costume ideas from other parents.

We always want our sons and daughters to experience the joy of seasons and holidays and to be included in our communities.  This time of year we have some unique opportunities to make that happen.  Enjoy and relish the stares!

 

 

Editor’s Note:  Does Fall inspire your creativity?  What does your family enjoy doing in the Fall?  Where have you found fun, accessible family events?  Do you have a great costume idea to share?  Email us at p2p-co@yahoogroups.com OR post a picture on our Facebook page! 

 

 Are YOU Connected?  It’s free and easy to join Parent to Parent of Colorado, an active community of parents with sons and daughters with disabilities and special health care needs who support each other on our journey of parenting. 

 

 

 

Pat Hart lives in Denver with his daughter, Izzy. Izzy is a happy girl, who loves being around people. She lives with significant developmental disabilities, although her exact diagnosis is not clear. Pat was a chemical engineer before becoming a full time stay-at-home dad when Izzy was born. He also serves as Izzy’s CNA and in his free time, can usually be found out riding his bike. Pat is a retiring member of the Parent to Parent Advisory Board.

 

 

 

 

A Magical Time or Frozen Out? Taking Sarah to A Broadway-Bound Musical

by | Oct 7, 2017 | P2P

A Magical Time or Frozen Out? Taking Sarah to A Broadway-Bound Musical

A Magical Time or Frozen Out? 

Taking Sarah to A Broadway-Bound Musical

On a crisp Saturday morning in mid-September, my daughter Sarah, 13, and I got ready to go see Frozen the Broadway-Bound musical at the storied Buell Theatre.

She wore a black velvet dress and sensible REI shoes, while I put on a Kohl’s polka dot dress and Ann Taylor heels I had bought in the late ‘90s for a job interview, which led to painful blisters after the matinee. But it was well worth it.

Full of nerves, I met Sarah’s grandma outside the main doors and we began climbing sets of stairs to the top floor balcony, enjoying the view out the tall glass windows of downtown, along with the rainbow of sparkle dresses and tiaras on toddlers passing by.

Outside the door, we shook hands with Lori Garza and Mike Prosser, Patron Service and House managers respectively, for this portion of the Denver Center for Performing Arts. Along with us was Kirk Petersen, Associate Director of Ticketing Services.

I like to tell my friends I set this up as a “come to Jesus” meeting, even though I am not religious and if I were it would be of a Jewish faith. This was an endearing phrase my husband’s devout Catholic stepmom liked to use when the family needed to all come together to get some clarity on an important issue at hand.

For us, the issue at hand was Sarah and her manifestation of autism. Sarah rocks in her chair and when she is happy and thrilled by something like a musical, she emotes joyful yet truly unique noise, something like “ninga ninga ning.” And she likes to sing.

The trio assured me that they had their “A team” on the balcony to assist us with any issues that arise, and even offered to show me our seats ahead of time. Inside, we met Jasmine Palacios and Rhonda Miles, ushers assigned to monitor our area. They could not have been any kinder.  Honestly, I think all of us were nervous about what would happen.

The house lights went down and Act 1 began with a swirl of colorful costumes and perfect-pitch song. By the time we got to “Do you want to Build a Snowman,” Sarah was feeling the moment and since her chair had rollers on it, she rocked right into the empty space behind us in ADA seating. But no matter, my mom and I simply wheeled her right back.

Sarah began tapping on the metal bar in front of her; so did the little girl to our right and with more gusto. A boy in front of us asked a litany of questions to his mom while eating Robin’s egg blue cotton candy. Of all the activity around us, Sarah’s humming blended right in.

I don’t think I stopped smiling the whole first act. Sarah was mesmerized by the lights and special effects of icicles forming around the stage and we all gasped when Elsa’s gown turned a bright starlight silver after the last verse of “Let it Go.”

This could have gone horribly wrong, if it were a night crowd, or if the DCPA folks, including Heidi Bosk, hadn’t been so incredibly accommodating. Bosk had called me after I wrote a letter to the editor explaining how a ticket agent told me on the phone that if Sarah bothered anyone who complained, she would have to leave and watch the musical (at $80 apiece) on a screen in the lobby.

Well, that wasn’t entirely true. The actual rule is that discretion is up to the house manager. Which is why I suggested a pre-meeting to iron out details and happily become in their words, a “guinea pig” family to test the waters for special needs kids at the DCPA’s arts events.

The DCPA went the extra mile to ensure Sarah and her family had a magical time. And Petersen tells me that they are planning a sensory friendly event soon. It’s disappointing that Disney – which had done a sensory friendly Lion King musical in New York about six years ago — did not plan any opportunity for families like ours to feel welcomed when traveling to Colorado to offer this beautiful performance of the arts at its very best. But this is progress.

The next step is for you reading this at this P2P blog, Parenting with Altitude, to contact me, because my good friends Carl and Rhonda Benton, have graciously offered to purchase a block of seats to an arts event for our families! So please contact me with ideas! I am thinking perhaps the sensory friendly Nutcracker by the Colorado Conservatory of Dance this December.

Julie Marshall is an active member in Parent to Parent of Colorado. She is the founder of Brainsong, a nonprofit with a mission to open doors to the professional arts experience to families living with different abilities. Learn more at: www.brainsong.net

 

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