Thursday, December 11, 2014

Baking Memories 4 Kids

I've had a secret!!   A big one!!!  And I managed to keep it from the kids and that is a pretty darn near unqualified miracle around here.

Let me backtrack a bit.  To about the summer/ fall before.  Our family was nominated by another awesome family for a trip to Disney World.  This trip is expenses paid and we stay in the Give the Kids the World Village.  It is an amazing opportunity and a very big blessing for our family.

Baking Memories 4 Kids is non profit and is an awesome organization.  You can lean all about them by clicking here.  They are also on Facebook and you can find them and like them there.

So how do they send kids and their families on these trips.  By baking cookies.  And they are darn good cookies!  So good this gluten free lady committed a big no no and ate one (or two I'm not telling!!).  They are yummy, home made, and every container of cookies people buy help send families with terminally ill children or children with life threatening medical conditions to Disney.

We are excited to go.  We go in February.  Today was the big reveal.  We were allowed to invite friends, family, and the mail man (she was busy though lol) to Panera in Charlottesville.  They have been so amazing in supporting Baking Memories and hosted our reveal party today.  They also gave us lots of yummy food!  Always a plus in my book!!

We arrived at the Panera and Frank was already there with the news!  We got to be TV stars:).  I don't think Marvin quite realized what was going on at first since I told him we were taking a day to celebrate my birthday and meeting our cousins.  Even bumping into my two friends didn't tip him off. Now that full realization has sunk in he's making plans on what he is going to do (and Amanda, I'm sorry to say he doesn't want to ride an alligator.  He's worried it will eat him, lol).  Here are some pictures of our day!


Here we are with Frank.  He lives to surprise the kiddos!!  It was worth keeping the secret for so long to see the look on their faces!!

Cary Lynn, the star of the show, got plenty of attention.  Amanda, my friend, whose family is going with ours the same week loves my little girl.  And Cary Lynn loves Amanda.  Just mentioning her name brings smiles to my little girl's face and that means a lot to this mama.  Grandma also got lots of cuddles too!  For a little girl who spent so much of the beginnings of her life in a sterile hospital with not a lot of attention she makes sure she gets it now!
Marvin is hanging out by the camera.  My little man who is so charismatic in small groups was a bit overwhelmed today with all the attention, but he did great!

I love my kids.  This vacation is a chance for our family to live a normal life for one week.  One that doesn't involve doctors, therapies, and all that jazz.  For a family like ours these moments are precious.  Because we don't know what's going to happen in the future.  Every moment we can spend together is precious and when you live with a medically fragile child it's something you don't take for granted.

Thank you Baking Memories 4 Kids.  You have given us an amazing gift.  I'm so grateful for this chance and we are so ready for this trip.  Marvin is packing a backpack as I write this:).  We are ready and so excited!  Thank you seems inadequate but you will never know how much this means to us!!  Look out Disney, here we come!!


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Amy Fields is ready for Disney!!!  While she is waiting you can follow her on her blog Many Kinds of Families.

Monday, December 1, 2014

Why having accurate medical records is important for family caregivers




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Parents need to make sure that the details of medical events occurring for their child with special needs are correct.  This is particularly important during hospitalizations, when changing health care providers, or transitioning to adult health care.   

How to keep records
Parents should keep brief notes of visits and especially bring a small spiral notebook or online if they have access during hospitalization.  They should also get “clinical summaries” after appointments and have their child’s PCP (primary care physician such as a pediatrician) copied.  Family caregivers can request copies of other records, such as hospitalization, from the department that cared for their child such as gastroenterology etc.  If the child has complex needs, families may have to get records from each department.  In addition, parents can request results of testing such as x-rays from radiology and any procedures from surgery.  It is important when getting surgical records to also request pathology reports (results.)  It may also be a good idea for the child to wear a medical id bracelet that has all of their basic information on a flash drive.
 



 
 Photo www.nymetroparents.com 
 
Making sure records are correct
Parents can compare the doctor’s notes with their own.  It is vital that any major events such as “coding” and needing to be resuscitated are documented correctly.  Correct records will result in better care and inaccurate records can have negative implications. 
What to do if records are inaccurate
Families can discuss the record with the appropriate department that treated the child.  Sometimes, older records can’t be changed in the computer system.  However, parents can ask to have the record “amended” which means an additional note will be attached to the record to clear up any confusion.  Families should request a copy of this additional record in writing.  They can use this not only for their child’s medical history file but also for new health care providers who are just learning about their child.
 
 

 
Photo www.venturebeat.com                          
 
      
Why good medical records are so important
Inaccurate medical records can adversely affect a child’s health care.  For example, pulmonologists and neurologists would need to know if a child went into respiratory distress during a seizure.  Nursing staff would need to know of infections that the child acquired in the hospital such as urinary tract or c-dif (clostridium difficile) infections to which the child wouldn’t otherwise be susceptible, and take precautions.  Surgeons and anesthesiologists would need to know if a child had to be reintubated with a breathing tube after a procedure.  When children are have complex needs or are hospitalized, they may have many providers, so these details will help prevent adverse events. 
Families can ensure that the medical information being shared about their child is correct.  This will result in better health care and better outcomes for their child.  
 
Resources 
American Academy of Pediatrics-Build Your Own Care Notebook
Washington Department of Health-Care Notebook www.pluk.org/Pubs/CareNotebook_790k.pdf 
For self-advocates - My Health Pocket Guide www.waisman.wisc.edu/cedd/pdfs/products/health/PG.pdf
Helpful Contacts:
Family Voices/ Family-to-Family Health Information Centers
 
 
 
 
 
 
*For more information on this topic, see Reviewing and Amending Medical Records” factsheet from the Statewide Parent Advocacy Network at http://www.spanadvocacy.org/content/reviewing-and-amending-medical-records-fact-sheet.
 
Remain Hopeful, 
Lauren  
 
Lauren Agoratus is a parent/advocate who works for the Statewide Parent Advocacy Network and serves as the NJ Coordinator for Family Voices (www.spanadvocacy.org), a national network that works to “keep families at the center of children’s healthcare” at www.familyvoices.org or FB www.facebook.com/pages/Family-Voices-Inc-National/137783182902269.  She also serves as NJ representative supporting caregivers across the lifespan for the Caregiver Action Network (formerly National Family Caregivers Association) in a volunteer capacity at http://caregiveraction.org/ or FB www.facebook.com/CaregiverActionNetwork.
 
 
 
 

 
 
 
 
 
 
 
 

Wednesday, November 19, 2014

Pirates of the Parenting World

 
Last week, Weston and I visited with Dr. George, his primary care physician. Dr. George is an important and supportive figure in our lives. He stands beside us and faithfully weathers many of our unusual family crises.

He is a good friend.

Appointments with Dr George are unusual because we do not talk about healthcare alone. We talk about life and Weston's personal well being.

During this appointment, Dr. George decides to address the typical apathy that often defines the attitude of teenage boys toward their mothers. I have written about it many times on my blog. You may remember Weston's OMG, I can't believe I have such a clueless mother mind set.

But today, Dr. G explains to Weston that he is very fortunate to have me as his mother. He tells him I am a pirate.


Describing me as a sword wielding, pistol slinging hellion of the sea, sailing her ship into uncharted territory, thwarting the efforts of the established regime whose misguided objective is to subdue Weston's fiery spirit.

Weston smiles just a little, picturing his mother in this devilish light. I am a little surprised too by this comparison since I usually see myself as a type of law-abiding and revoltingly accommodating superwoman. But in thinking about this further, I believe Dr. George is right.

I am like all parents of children diagnosed with special needs, I am a pirate of the parenting world.


When you think about it, special needs parenting is not about following the rules, and obeying the laws, it's about breaking them. It's about questioning authority and pushing boundaries, aligning yourself with rebellious others, instilling fear and awakening the imprisoned hearts of a blind and passive public.

It's about commandeering a group of misunderstood misfits through dangerous waters and fighting aggressively to fulfill the selfish needs of these brave and ragged few.

It is a difficult lifestyle filled with danger and adventure, a series of intense battles interspersed with a few welcomed reprieves.

It's about mastering weaponry and finding the fire in your soul to fight bravely to the death.


You care little for what others think and find amusement in the fear you provoke in others.

But there is also an unusual kind of duality associated with being a pirate.

A certain code among thieves.

A need for being as civil as you are savage,

as cooperative as you are querulous

and as disciplined as you are unruly.

You are a master of the mundane and a survivor of storm.

You trust no one.

You sail alone, always adrift, and even among fellow pirates you find few friends. Similar spirited temperaments and accompanying bravado create frequent dispute and deadly skirmishes among pirates.

And yet with these unique few, brilliant seamanship can occur with the precise timing, execution, skill and camaraderie that builds over the many years of serving and sailing together.


But perhaps most importantly, is the indestructible energy force behind all of these dastardly deeds.

The motivating drive behind all acts of piracy and rebellion,

The burning and intense desire to seek a treasure whose worth is immeasurable.


Yo ho, yo ho, it's a pirate's life for me.



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Lisa Peters writes about family life at www.onalifelessperfect.blogspot.com

Tuesday, November 18, 2014

Dear Santa

My son just e-mailed Santa.

Yes, it's only November.

Yes, my son is 18.

Yes, my son did request a Talking Ben stuffed toy.

Yes, the toy is listed as being for children age 3.

Yes.

Yes.

Yes.

I barely batted an eye this year. There is truth to the belief that practice makes "perfect."

None of us are perfect, but as we practice parenting the children we actually have, as opposed to the children we thought we wanted, wished we had, or are jealous we don't have, we at times reach the "gap" they talk about in meditation. We can get to that place without thought. That place of is-ness. That place of being. That place of alignment.

Eckhart Tolle says, "When you complain, you make yourself a victim. Leave the situation, change the situation, or accept it, all else is madness."

One can hardly leave one's child. One can hardly change one's child. One can only accept one's child.

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Carrie is a parent and advocate of a child with special needs and even more special gifts. She blogs at http://carrielink.blogspot.com/ where this is pretty much her favorite topic. Carrie’s book, WIL OF GOD: Embracing the Relentless Love of a Special Child, is available in print on Amazon and all e-readers.


Tuesday, November 11, 2014

National Adoption Month

I bet you can guess what subject is near and dear to my heart and my life:).

I know every month has 8 million awareness causes.  November is also national novel writing month (because I know you are dying to know that).  But I am not planning on writing a novel (yet) so let me get back on topic.

If you follow my blog you know I'm adopted.  When I was dating my husband I made a point of telling him I wanted to adopt.  His response, "no problem".  But he wanted to try having our own kids first.

Well the years passed.  So did the miscarriages.  I watched other people around me get pregnant and have families.  It was hard.  So I broached the subject of adoption again.  This time I got the green light.

So I did the research.  I was all ready to hop a plane and fly to a foreign country to get a baby.  But then I looked at the cost.  It was staggering.  My every practical husband suggested that we "adopt local".  So we did.

It wasn't easy.  It took three long years and lots of broken hearts.  Long nights and days of crying. But then Marvin came home to us.
He was 18 months old and had special needs.  But looking at him made those three years worth it.  So very worth it.

So the years passed.  We still felt that our family wasn't complete.  So we went through another couple of years of paper slogging.  And then Cary Lynn came home.
It hasn't been easy.  Choosing to adopt can be a challenge in itself.  Taking a leap of giant faith and adopting two children with massive special needs has added to the challenge.

But it has been an amazing journey.  The bumps in the road have made me a stronger person.  These two little people took my world and turned it upside down.  They are my all and my everything.  My heroes.  They have made me the person I am today.

But right now there is a growing need.  There are over 397,000 children in the US who are living without permanent families.  Out of those 101,666 are legally free for adoption.  But nearly 32% of these children will wait 3 or more years for a mama to bake cookies with them and a daddy who will tuck them in at night.  Every child needs a place to belong.  There is NO such thing as unadoptable.

Children are our hope and future.  Children who age out of the system are more likely to NOT finish school, end up in jail, and even worse repeat the same cycles that they lived through.  That is not OK. They deserve more. Adoption is a powerful way to bring permanence to a child's life and to let them know that they do matter.

So this month whether you choose to celebrate national novel writing month, tree awareness week, world vegan day, or national maintenance week keep in mind that there are so many waiting children who want nothing more than to celebrate these special times with family.

It's not an easy road to take, but it is one of the most incredible journeys and rewarding experiences that you will ever have.  Trust me on this one.



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Amy Fields is a mother, taxi cab driver, and has been know to jump out of phone booths in tights and a cape.  You can follow her at Many Kinds of Families

Saturday, November 1, 2014

How social skills help children with special needs and family caregivers




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One of the key factors for success in life for children with disabilities is having good social skills.  This can affect everything from early childhood to school to adult life. 

What are Social Skills?

          Social Skills are how children interact and communicate with those around them.  This includes their peers as well as adults.  Social skills affect how well children get along at home and school.  They have implications for success in academic life, community living, and employment in adulthood.  In fact, social skills are the largest barrier for successful employment for young adults with disabilities.

          One tool for success in helping children with social challenges is the use of Social Stories.  The stories explain what will happen and prepare the child for the event.  The stories are used repeatedly so that the child knows what to expect.  This allows students to avoid feeling overwhelmed and acting out, so they are more successful.  Sometimes a “social autopsy” will be done with the student after an event that didn’t go well to discuss what went wrong and how to improve next time. 



School Age

          Many students, especially those with developmental disabilities, benefit from Social Skills instruction.  In some cases, a psychologist can work one-to-one with a student until they are ready to work in a group, where it really counts.  Some parents choose to do this privately through their health insurance.  However, Social Skills is a “related service” under the Individuals with Disabilities Education Act (IDEA.)  This means that it can be put into a student’s Individualized Education Program (IEP) and offered during the school day.  Just like other related services such as speech, physical, or occupational therapy, Social Skills instruction should be listed with duration (how many minutes) and frequency (how often each week) and as an individual or group

activity.  Support for developing and enhancing social skills can also be provided in before- and after-school and summer programs if needed. 

Transition to Adult Life

          It is essential that families start early with Social Skills and then enhance these skills during transition.  There are opportunities in school called Structured Learning Experiences or Community Based Instruction.  These offer students an opportunity to practice employment and social skills in a structured environment with support.  The most important component is that this takes place in the community.  Students who participate in these programs are more likely to be successful and independent, which is a plus for families who may no longer have to be caregivers through the lifespan.  Successful transition to adult life will maximize the potential of the individual with special needs so that they can live independently to the best of their ability.

Resources 

Carol Gray’s Social Stories

Social Skill Autopsies: A Strategy to Promote and Develop Social Competencies

Parent Center Hub:  Social Skills and Academic Achievement

U.S. Department of Education:  Guide to the Individualized Education Program (see section on “additional guidance” which refers to social skills and the law)

Wrightslaw:  Is the school required to provide social skills training?

Helpful Contacts:

Parent Training and Information Centers
PTIs help families with special education, including getting social skills on IEPs.  PTIs can be found at http://www.parentcenterhub.org/find-your-center/


Centers for Independent Living
CILs maximize skills needed for independent living, including social skills and self-advocacy.   CILs are found at http://www.ilru.org/projects/cil-net/cil-center-and-association-directory


Remain Hopeful,
 

Lauren  
 

Lauren Agoratus is a parent/advocate who works for the Statewide Parent Advocacy Network and serves as the NJ Coordinator for Family Voices (www.spanadvocacy.org), a national network that works to “keep families at the center of children’s healthcare” at www.familyvoices.org or FB www.facebook.com/pages/Family-Voices-Inc-National/137783182902269.  She also serves as NJ representative supporting caregivers across the lifespan for the Caregiver Action Network (formerly National Family Caregivers Association) in a volunteer capacity at http://caregiveraction.org/ or FB www.facebook.com/CaregiverActionNetwork.

Thursday, October 30, 2014

Slow Motion Mothering

I am a fast moving kind of a gal.

I like to go, go, go and get things done, done, done.

I like making lists and checking things off.

I guess it would be safe to say that I am most happy when I am moving.

But this fast moving, freewheeling, on-the-go lifestyle is not very conductive to raising children diagnosed with things like sensory processing disorder and poor motor planning issues.

In fact, I have discovered, somewhat reluctantly, that raising my children is all about learning how to slow things down, way down. It is a painful life lesson often delivered to me with blunt force trauma to the brain.


But applying the brakes has never come easy for me.  For a long time, I resisted this notion of slow motion mothering. I continued to run faster than a speeding bullet, slowing my pace only slightly as I dragged my overwhelmed children from one chaotic event to another.

I was surprised, even angry, when my children began to scream and cry.

I thought at first, that the trouble was them.

What I have learned most recently..... is that the trouble is me.

As many of you know, Nicholas has been diagnosed with Prader Willi Syndrome. Many individuals diagnosed with this disorder are also diagnosed with dyspraxia.


Dyspraxia is a developmental coordination disorder that causes weakness in comprehension, information processing and listening.
 
It is a disruption in the way messages from the brain are transmitted to the body.
 
Often children diagnosed with dyspraxia also have issues related to the processing of sensory information. 
 
 
Too much sight, sound, smell, touch or taste information delivered too fast to the body overwhelms the brain resulting in emotional overload.


What I have learned is......this behavior is not telling me ...."I want to be defiant"

It is telling me.........."I'm overwhelmed"


Slowing things down and minimizing the amount of sensory input is crucial to enabling my son to be successful in this world. It enables him to enjoy loud events, boisterous activities and large crowds.


As a mother of a child diagnosed with this condition it is my responsibility to slowly build Nick's sensory endurance. Introducing events and new experiences slowly, building each time in intensity so that he can finally begin to function and relate better to our fast-moving world. This is a necessity if he is ever going to be able to live on his own, go to school or secure a job.

And so it is with much difficulty that I am learning how to slow down the eager speed demon.


Now if I can just get the rest of the world to understand this important lesson.


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Lisa Peters writes more about family life at www.onalifelessperfect.blogspot.com.

Saturday, October 18, 2014

Presense


Vowed to start (rather, re-start) yoga when school started back up in the fall. It started back up, and so did I. This is my last back-to-school fall, the last time I'm going to let my son trick-or-treat, the last season of football games, the last of so many routines, rituals and rhythms that have come to mark the passage of time.

Yoga is helping me to be present. For one hour, I am "there." I am not in my head. Not planning the future to a T. Not dwelling on the past. Not making a list. Not replaying the incredibly ignorant/annoying/maddening thing someone did or said. I'm present.

It helps that I'm not very good - I need to really pay attention to the teacher. I need to hear the instructions, and see what she's doing, for it to make sense to me. By the time she's said, "Let's do the other side now," I've long forgotten what the first side did.

Savasana is as close as I've ever gotten to an out-of-body experience. At the end of the practice, lying on the mat, laid over a dirty carpet, people all around me, I am in another place. They also call it the Corpse Pose, or final relaxation.

As the mother of a special-needs adult, what happens to him when I'm actually a corpse, is ever on my mind. To make my whole life one big yoga practice, is the goal. To be present. To listen. To watch. To keep breathing. To stretch. To add-on when I can, and adjust when the "pose" is too demanding - that's the key.

And to be at perfect peace for the "final relaxation."





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Carrie is a parent and advocate of a child with special needs and even more special gifts. She blogs at http://carrielink.blogspot.com/ where this is pretty much her favorite topic. Carrie’s book, WIL OF GOD: Embracing the Relentless Love of a Special Child, is available in print on Amazon and all e-readers.


Saturday, October 11, 2014

Happy Birthday!!!


She came into my life like a rolling thunder storm.  A little nine month old.  She came with one broken cardboard box full of clothes and shoes that were too small and broken toys.

A week later we were in the hospital with a child who nearly died two days after coming home to us.

Two long scary weeks later she came home to us.  She had lost three pounds and I was terrified that she would not make the year.  But she did.  You see no one told her she had an expiration date stamped on her.
We celebrated not one but two birthdays!!  Two precious years with a medically fragile child is an amazing feat.  She has shown me courage, strength, and grace.  She has taught me that life is a beautiful fragile web.  I don't dwell so much in the future but live for today, She is my hero and next week we get ready to celebrate another milestone.  Three.  My daughter has made it to three.  For me that is such a blessing.

What the year brings I don't know and frankly I don't want to.  I choose to live for today and celebrate my daughter.
Happy birthday little girl!  Mama loves you and is proud of her warrior daughter.  You bring me more joy than you know.
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Amy Fields is a mama and a blogger.  Follow her at Many Kinds of Families.

Wednesday, October 1, 2014

Will my child be able to decide for him/herself?




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Many parents have fears for the future of their child with special needs.  Families wonder if their child will be able to take care of themselves, including making medical and other life decisions. 

Is Guardianship the Best Choice?

Families may not realize that once their child is 18 (or the age of an adult under their state law), they get to make educational and medical decisions on their, regardless of their disability.  Because families may have questions about their young adult’s capacity to make their own decisions, or because a professional may encourage them to do so, they may consider going through a legal process to have a court declare the adult with a disability not competent to make decisions and give “legal guardianship” to their parent(s).  Many individuals with disabilities, and a growing number of parents, now see this as a civil rights issue, as it essentially takes away the ability of the person with a disability to decide about their own life.  While in many states there is the ability to apply for “limited guardianship,” there are also other options that avoid the need for guardianship and maintain the civil rights of the adult with special needs.
 


                                                                               www.ncil.org
 
 
Alternatives to Guardianship

There are many tools other than guardianship that parents can use to participate in decision-making on behalf of their young adult with special needs while still maintaining the civil rights of the adult.  For example, parents can use a “power of attorney” or even a form signed by their young adult authorizing them to participate in and/or make decisions for their young adult (see Resources and Forms below.)  There is an excellent guide for self-advocates, “Self Advocacy Guide to Guardianship” (see chapter 2) from Disability Rights Idaho, available at http://www.disabilityrightsidaho.org/images/content/docs/Self-Advocacy%20Guide%20to%20Guardianships.pdf. 

www.aboutkidshealth.ca
 
Children and adults with disabilities need to have input using independent or shared decision-making to the best of their ability.  Families and self-advocates need to be aware of their choices, so that they can pick the options that best suit their needs.  For more information, please see our factsheet at http://www.spanadvocacy.org/content/alternatives-guardianship-health-decisions-families-young-adults-special-needs.
 
 
 
                                                        autisticadvocacy.tumblr.com        
 
 
Resources:
Alternatives to guardianship resources can be found at:
 
Ø  Alternatives to Guardianship
 
Ø  Guardianship & Alternatives to Guardianship http://www.ridlc.org/publications/RIDLC_Guardianship_Booklet.pdf
 
Ø  Guardianship and its Alternatives – (see Chapter 3)
 
Forms:
Sample healthcare power of attorney/advance directive forms
American Academy of Family Practitioners (AAFP)
 
Please note: This information was current at the time of publication. But medical information is always changing, and some information given here may be out of date. For regularly updated information on a variety of health topics, please visit familydoctor.org, the AAFP patient education Web site.
 
Helpful Contacts:
Parent Training and Information Centers
PTIs help families with many issues, including transition to adult life.  Transition is more than school-to-work and also includes adult healthcare, post-secondary education, and self-advocacy.  PTIs can be found at http://www.parentcenterhub.org/find-your-center/
 
 
Centers for Independent Living - CILs maximize skills needed for independent living, supports needed to achieve this goal, and maximize potential of individuals who may not live independently.  CILs are found at http://www.ilru.org/projects/cil-net/cil-center-and-association-directory.
 


Remain Hopeful, 

Lauren   

Lauren Agoratus is a parent/advocate who works for the Statewide Parent Advocacy Network and serves as the NJ Coordinator for Family Voices (www.spanadvocacy.org), a national network that works to “keep families at the center of children’s healthcare” at www.familyvoices.org or FB www.facebook.com/pages/Family-Voices-Inc-National/137783182902269.  She also serves as NJ representative supporting caregivers across the lifespan for the Caregiver Action Network (formerly National Family Caregivers Association) in a volunteer capacity at http://caregiveraction.org/ or FB www.facebook.com/CaregiverActionNetwork.