What do YOU think of when you hear the word “ARTHRITIS”?

When I was younger, if I didn’t know the meaning of a word, my mom would say “look it up”…well, I decided to look up “arthritis” for the fun of it…

Merriam-Webster dictionary defines arthritis as: “inflammation of joints due to infectious, metabolic, or constitutional causes; also: a specific arthritic condition (as gouty arthritis or psoriatic arthritis)”

Let’s dive in a little deeper… Most of us hear the word arthritis and think of the form called “osteoarthritis” and yet we use the word “arthritis” as if it is interchangeable with the word “osteoarthritis”.   We all know someone, usually an older person, who has arthritis…in fact, it is so “accepted” as the norm that many elders will say something like “oh, it’s just my arthritis acting up” if you ask why they are moving with caution in some way.  Our culture/society expects this because it’s only natural as one ages.  But why do we accept pain as acceptable…it’s not something anyone should have to experience.

Merriam-Webster dictionary defines Osteoarthrtits (OA) as:  “arthritis typically with onset during middle or old age that is characterized by degenerative and sometimes hypertrophic changes in the bone and cartilage of one or more joints and a progressive wearing down of apposing joint surfaces with consequent distortion of joint position and is marked symptomatically especially by pain, swelling, and stiffness—abbreviation OA; called also degenerative arthritis, degenerative joint disease, hypertrophic arthritis”

OA is NOT what children with juvenile arthritis have!  Juvenile arthritis is a form of rheumatoid arthritis and more specifically is differentiated from OA because it’s an autoimmune arthritis.  Juvenile arthritis is not NATURAL in any of its various forms.  Yet, many families experiencing JA have heard at one point or another, something to the effect of “Oh, I know about that (referring to JA), I get arthritis in my …” or “My grandma has arthritis…” or  “I had tennis elbow and that really hurts…”  All of these comments are very well-intended.  They are a way of showing compassion or an attempt to relate to a disease that many know very little about.  But as a parent or a child/teen dealing with the disease, these comments are incredibly frustrating to hear spoken aloud because we painfully know that osteoarthritis is not synonymous with Juvenile arthritis in any way shape or form; except that they share one commonality in that the diseases both affect joints.  Juvenile arthritis (also known as juvenile idiopathic arthritis and juvenile rheumatoid arthritis) is an autoimmune disease.

Merriam-Webster defines rheumatoid arthritis as:  “a usually chronic disease that is considered an autoimmune disease and is characterized especially by pain, stiffness, inflammation, swelling, and sometimes destruction of joints—abbreviation RA; called also atrophic arthritis”

and autoimmune is:  “of, relating to, or caused by antibodies or T cells that attack molecules, cells, or tissues of the organism producing them”

and atrophy (verb: atrophic) is:  “decrease in size or wasting away of a body part or tissue; also : arrested development or loss of a part or organ incidental to the normal development or life of an animal or plant”

Juvenile arthritis (JA) comes in many forms and severities range from one end of the spectrum to the other.  Just as the various 100 plus forms of JA differ, so does the treatment.  Researchers are still learning about JA; there is still so much that is unknown.  And even if one treatment plan works for one child with the very same form of JA as another, it doesn’t guarantee it will work for every child with that form.  Each child is an individual.  Thus the challenge for pediatric rheumatologists is great.

I know that families who read our blog, especially whose child is newly diagnosed, may worry even more after reading about Parker.  But I want to reassure families to remember that just because something doesn’t work (or does work) for our child, doesn’t mean the same will happen if the treatment is used for their child.  I have heard that some families get really scared after reading about Parker.  We never intended to scare anyone, but we do ALL desperately need a cure for our children no matter where we are at in this JA journey.  Parker does have a severe and progressive form of JA called systemic on-set juvenile arthritis (also known as still’s disease).  Recently, we have learned that even with systemic on-set there are some who have less than 5 joints involved (oligo) and some who have more than 5 joints involved (poly) and that it’s children who are poly in nature that seem to have a more progressive form of the disease and that children with systemic on-set seem to have more immunology issues. For readers who are not familiar with systemic on-set JA, these children not only have joint involvement but also can have issues with rashes, fevers, and inflammation in any organ in the entire body   (source:  http://rheumatology.oxfordjournals.org/content/44/11/1350.full.pdf+html).  

Our family has chosen to be vocal about our experiences because we feel it is one way we can raise awareness and advocate for what is needed for ALL CHILDREN with autoimmune diseases.  They ALL deserve equal attention and we really feel that if researchers could figure out one autoimmune disease, it would help with making progress on all autoimmune diseases.



Michael, Logan, Parker, and Jesse (Logan's best bud) watch the sunset



So tonight the rain clouds drifted away as we watch the sunset on another glorious day.  We send out love to all families dealing with Juvenile Arthritis in any size, shape, or form.  May we all see a CURE become reality for our future children!

A Week in the Hospital and Parker is Finally Feeling a Bit Better

Well, we just might be over the hump...today is definitely better than yesterday.  Yesterday, Parker was in so much pain that he couldn't even stand without intense pain.  And he was having sweats so bad he soked his sheet.  Unfortunately, yesterday was also that final day of toradol; so he ended up getting additional morphine.  My heart was breaking for my sweet kiddo...

Systemic on-set juvenile arthritis is one mean vicious disease.  Parker's joints (feet, ankles, wrists, hands, knees, shoulders, neck, ribs, hips)  were sizzling hot yesterday and the vasculitis in his feet and ankles was pretty horrible.  The pictures below don't capture the thickness of the vessel swelling with justice and the red and purple shades of his skin were pretty intense, but they will give you a bit of a sense of what this horrible disease "looks" like.

 
 

His pericardial effusion is looking better and he does not have h-pylori.  All good news.  More labs were drawn today.  He is staying until tomorrow with hopes of being discharged.

We are thankful for the friends and family who have checked in with us and who are thinking of our son and saying prayers.  We have been taking it one day at a time.  Tomorrow will be his third shot of rilonacept so we are hoping for a bit more progress with each new sunrise.

Kids with JA are My Heroes!

Parker says, "Happy Father's Day to Dad and Grandpa Nick!"

Parker is still at Shands Hospital.  We are happy to say that he is improving.  Pain is still pretty intense but the meds are helping to take the edge off.  He got up and walked a bit today so that is great.  His doc came in this morning and although he is still symptomatic she was pleased that many of his blood levels are improving.  There are improvements with his ferritin, platelets, white and red blood cells, CRP, fibrinogen, and his sed rate is good.  She said that with the study she is seeing improvement in the blood first, so this is fabulous news. 



Swollen hands with red tips, greyness between joints,
paleness on hand





Red heels



Parker's abdomen and kidney ultrasound was good.  She does want to keep him in the hospital though because of the pain, pericardial effusion, stiffness, swelling and she is still waiting on some labs and she ran his immunoglobulins today.  He seems to breathing easier today.

We feel so fortunate to have such an amazingly thorough group of pediatric rhuematologists helping Parker.  In the last four days, he has actually seen all 3 of the docs and Michael and I know that their 3 brilliant minds always have Parker's best interest in their hearts because they not only treat him medically but with loving care.  We know that Parker has been difficult to treat and we appreciate their forwardness and honesty and their ability to explain things so that we can understand the whys and next steps and choices we have to make.  So, although it is never fun being in the hospital, we know that he is in excellent hands.

We are glad that Parker has moved past the "placebo phase" of the RAPPORT study and he says he has no regrets in doing it because he knows that he is helping find a cure.  And although Michael and I are incredibly sad to see our son in pain and that this darn disease has once again gone after his heart, we too feel that this next phase of treatment brings much hope. 

Last night was methotrexate night (all those families out there who have "shot night"...I feel for you all). We all thought Parker would be getting it as an infusion in his port....but because of the study and not wanting to compromise anything, it was ordered sub-Q (shot form).  Parker had a melt down...now mind you, he had his steroids increased again and he has been scared and then he was told he was getting the shot form...oh my gosh....we both were in tears.  He is fine with shots...but this method of giving him the methotrexate really makes him very nauseous and he was afraid he would puke.  Remember his stomach has also been really bad and they have been treating that along with the heart since they think his gastritis is flaring big time.  Methotrexate (for those of you who don't know) is a chemo drug and they not only were giving him a shot but an increased dose.  He finally agreed after much coaxing to do it.  They gave him IV zofran first to help and we did it right before bed so he could sleep through the worst part and I lay with him all night. 

It's crazy how I can hold it all together through so much and then something like this shot sorrows me to the core,especially since the doc is talking about continuing the shot.  For the last several months he has been doing the pill form of this because there is a methotrexate shortage of the shot.  And Parker really prefers the pills.  But we also think that the pills is what is irritating his stomach so bad.  I really hate systemic juvenile arthritis...I hate that we must treat it and so many of the drugs are so harsh that you have to give drugs for the drug side effects.  And yet, to not "treat" could have very grave consequences.  And , somehow these little kiddos endure it all....they truly are my heroes forever and ever.

Parker's brother, Logan, came to see him yesterday with Michael (Dad) and Great Aunt Sandy and Uncle John.  That was such a treat for Parker.  Especially when Dad showed up with a tattoo on his arm, just for Parker.  It says "Kids get arthritis too.  Parker's Purple Playas."  All the nurses and docs loved it too!  Pretty cool, huh!

We thank everyone who has checked in with us and who are continuing to say prayers.  Parker sends love out to all of you!

Parker is in the Hospital...

Just a quick note to update...Parker was admitted into Shands Hospital yesterday.  We visited cardiology yesterday for an EKG and Echo-cardiogram.  He has been having that feeling again and chest has felt pressure filled and he has had difficulty breathing.  Last week his nebulizer treatments seemed to help but not so much this week.  After the echo we went and had lunch and you know the saying "no news is good news", so after hanging in Gainesville for a bit we headed home.  About half way home we got the call to come back.

Parker has mild pericardial effusion again.  The good news is that they feel that it will correct itself and we won't have to drain it.  So, for now they are trying to make him confortable and we might increase his oral steroids because of this.  But we will see.  He is already on a hefty dose.  He is also having bad stomach pain and they are also treating that.

Because he is on the RAPPORT study there are some strick rules around medication and we don't want to jepordize the study but of course if he gets any worse we will not hesitate to do what we need to do to keep him safe.  He is looking better today, which is good.  He definitely has had 2 shots of real drug (rilonocept) because at week 4 kids are guarenteed real drug.  However we are pretty certain he was getting placebo the first 4 weeks.  He is just into week 5.

I will keep you posted as we know more. Thanks all for continuing your prayers and for keeping us in your thoughts.  It means a lot.  We are hoping this is a short stay.

Living While …..Waiting….Always Waiting

This school year has been one of much optimism, but our optimism has been shaped into “realism”.  We have pushed hard to keep Parker IN his middle school because with every new drug (and there have been many) we held on to hope that “any day now, things will get better”… and in moments of time, some things get better, as if to tease us of the possibilities.  Parker becomes so hopeful, rejuvenated, and motivated with every glimmer of hope for better days.  And let’s be totally honest, when it then doesn’t work, the entire family is deflated once again.  It is very difficult to explain this phenomena that keeps happening over and over. 

When we started this journey over 4 years ago, we just wanted an “answer” because we really felt that an answer would lead us to solutions.  And we felt like we would be better able to not only support Parker’s medical needs but also his educational needs.  Well, for 2.5 years we have known what Parker “has”…We STILL don’t know how to best support his educational needs and I feel like so much rides on the RAPPORT study that he is current on.

This disease is so complex.  It’s difficult to comprehend what could happen, while at the same time pushing to maintain optimism, motivation, and faith that it will get better.  We don’t make “promises” anymore around drugs…we don’t make plans without a back-up plan and we write in pencil on our calendar…we don’t expect huge gains….BUT we do continue to hope the cure will come; we do continue to make plans and hope we can follow through and that others will understand when we can’t; and we do push for tiny gains and celebrate successes because the small bits of progress are huge for Parker!

Parker has a huge powerful energy about him.  We really believe that his strength is unimaginable for some to even begin to comprehend.  And he is a great illusionist… he is engaging and smart and puts forth so much love …and he fools people in thinking he is ok “when he looks so good”.  And we are extremely proud of him because he does rise; he does push on; and yet he has had to learn to accept that his body does not cooperate with what he would like it to do…at least not yet…

I say all this because we want people to learn and to really understand…but I am beginning to believe that it is impossible to totally understand systemic on-set juvenile arthritis…shoot…doctors are still trying to “understand” it.  Here is what we do understand…without proper treatment, systemic JA:

·         causes incredible relentless fatigue

·         produces intense pain

·         causes oligo or polyarticular arthritis:  joint swelling is in every joint for our son with heat and redness (Parker has poly)

·         induces fevers

·         brings on rashes

·         causes pleurisy (swelling of the lung lining)

·         irritates the lining of the stomach and causes gastritis (swelling of the stomach lining)

·         causes pericardial effusion (swelling of the heart lining)

·         enlarges the lymph nodes (we learned there are even lymph nodes near the stomach)

·         causes erosion and joint narrowing

·         results in osteopenia

·         causes anemia

·         causes immune issues

·         stunts growth

·         causes thrombocytosis (increased blood platelets)

·         causes hyogammaglobulinaemia (decrease amount of immunoglobulins in the blood and can cause higher susceptibility to getting infections)

·         causes fibrinogen levels to be off (this can affect coagulation of blood)

How do we know this?  Because we have to know this… Parker has experienced all of this and more…because he also has overlap syndrome of:

·         vasculitis

·         raynaud’s (cold hands and feet that turn purple, red, and white)

·         myositis (weak muscles)

·         psoriatic features

We also know that sJA can cause issues with pretty much any organ in the entire body and many have issues with an enlarged spleen (our son does not have this…wahoo).  And in two thirds of the deaths that happen in children with JIA, they are with children who have systemic JIA (source:  http://rheumatology.oxfordjournals.org/content/44/11/1350.full.pdf+html)

Parker is living…living and fighting this damn disease that is trying to over-take him, but he is fighting hard to stop it.  Parker’s voice was heard when he said he wanted to do the RAPPORT study.  At first, my husband and I were not going to do it because we had some issues with our insurance, but after Parker’s last hospital stay, he is the one who re-initiated the discussion around the study.  At this point, Parker was on 3 biologics (actemra, Enbrel, with a dose of remicade), along with IVIG infusions.  Not to mention the multitude of other drugs to control this disease (pain meds, anti-inflammatory meds, meds for meds, chemo, steroids, blah blah blah).  And the steroids are possibly his saving grace right now…because the “study drug” is not working (or he is on placebo).  One of our main goals has been to get him off steroids…he has been on them for 2.5 years…way longer than we ever expected. 

So with regards to school, Parker has been in hospital homebound because he barely made it to school first semester.  Oh, and first semester he was only on a part time school status with 2 classes on-line.  It took him all school year to complete the first semester of both of those on-line classes and he only has one test and his exam left.  As of today, he completed all of his hospital homebound exams and he is officially done with second semester of 7^th grade.  All year, he has been playing major catch up with school.  We feel like next school year totally rides on this study and if it works.  Needless to say, we have re-initiated hospital homebound for next year just in case.  Like I said, we are becoming “realists”...yes, me, who fought to keep him in school is realizing…but we must concentrate on helping him feel better because we don’t even want to think of what “could happen”…

So we are living…coping….comforting Parker…and constantly praying…and here we are again, waiting…waiting for 5 weeks to pass since stopping biologics and being ensured he will get the study drug…in two more days we know for certain Parker will get the real trial drug.  We are unsure if he has been getting placebo, or as Parker says “if this is the real drug, it sucks”.   Need I say more…

LOVE Powers Our HOPE

Wow!  What a week we have had… I have been pondering over how to write our “thank you” all week in the midst of all of our happenings…As many of you know, Parker was accepted into and started the RAPPORT study which is an National Institute of Health study on the drug Rilonocept and its effects on systemic on-set juvenile arthritis.    So between work, labs, and a trip to Shands Hospital, I am finally sitting down to write about our Arthritis Foundation Walk and the thankfulness that overflows in our hearts…

Well, here it goes…  People walk in and out of our lives each and every day, it just naturally happens.  Taking the time to build lasting relationships with people has blessed our lives immensely.  And it’s moments like we have experienced when you realize how interconnected we all are… On May 5^th, we had the pleasure of sharing in one of the most remarkable experiences with many many people who will forever be IN our lives and dear to our hearts.  May 5^th, Parker was showered with love that totally wrapped around our family in a way that words cannot quite explain.  As we pulled into the parking lot, we gasped at the sea of purple starting to wash over the park.  We knew a lot of friends and family were joining us, but it’s overwhelmingly powerful to actually “see” it.  In addition to our team, there were many people out supporting various other teams…definitely more than last year.  All I kept thinking is how much love was in that park for one single cause!  Everyone’s lives were touched by the many forms of arthritis.

We are so very thankful to all the people all across the nation who wore their purple for our sweet boy, Parker.  And we are incredibly thankful to the over 130 people who came out to walk with Parker’s Purple Playas.  There were friends from my work, University of South Florida, and Michael’s work, Southern Wine and Spirits, who not only generously donated but also came to walk with their families and friends.  And did you know that Southern Wine donated each and every one of the 202 shirts that were made with the drawing of Parker’s Purple Playa on the front saying “I’m not fat; I ‘m puffy!”  It was so wonderful to have all our family and friends join us and even many strangers who quickly joined our circle of friends.  We had several early childhood colleagues/friends from multiple agencies and preschools who walked and some even hosted fund raisers to donate to the cause.  Girl Scout Troup 65 and Boy Scout Troup 212 joined with their families and also worked together to raise funds.  My aunt and uncle came out to pop kettle corn and donated all their proceeds to the Arthritis Foundation.   And a very special thanks to Joseph who went to all the staff from Parker’s middle school and shamelessly collected donations for his friend Parker.  We even had some staff and kids from TCMS’s Junior K Club join us.  Team mates also asked their friends and family to donate and walk.  We had complete strangers opening up their hearts to us.  Children from Westchase Aftercare gave up their coins to donate; and a very special little 4 year old Purple Playa, Kailyn, collected her precious “pennies for Parker”.  We had donations from all over the nation…from colleagues, friends, family, and complete strangers…all touched by one sweet boy, our boy.  We love him dearly.  If you haven’t met him yet, here is a short video that he made to explain what it is like to live with systemic on-set juvenile arthritis…I am sure if you watch, you will see how people fall in love with him too.  Parker's YouTube Video Link

As Parker was getting his team ready for our walk team picture that morning, I was in the bathroom helping the Tampa Bay Ray’s mascot, Raymond, get over to the team.  When I walked around the corner holding Raymond’s hand and looked out at Parker’s Purple Playas positioned for the snapshot, I could see Logan at the very tippy top of the mountain-like jungle gym.  Logan, Parker’s older brother, right at the top of it all.  I was totally overwhelmed at the site.  Logan has endured all of this right alongside of his brother and in that moment I was so very proud of the young man he has become.  He has strength, compassion, brilliance (the kind that shines), and he so deserved to be “on top”.  At first he was all I noticed…and as we got closer and closer the white nose I was hearing turned into cheers.  My breath escaped me…and my eyes glassed over with the tears that were trying to flow.  We were all there…in the moment… together!  For one cause!  With HOPE in our hearts! 

Parker grabbed his bull-horn that Logan had covered in duct tape…purple duct tape, of course.  He cheered his team on while we snapped pictures…  We love each and every one of the Purple Playas.  So much of the morning felt like a blur…  As we all began the actual walk, I kept thinking how incredible it was to share in this moment…all of us…walking together.  As we rounded the second corner I felt compelled to thank everyone…We were at the front of the walk, so I turned around and started to walk against the flow of traffic.  That was pretty funny because my husband also had the same idea (we had separated somehow but met back up as we walked against the crowd).  We knew the only way we could try and say thank you to everyone was to walk all the way to the end…so we did.  If you are reading this and we missed you somehow, please know that we are eternally thankful.

When we finished walking, the crowd dispersed somewhat to play games, enjoy the playground, and to check out the vendors.  And then a marvelous surprise arrived.  Parker has always adored one of the Rays baseball players…and guess what…his hero, Ben Zobrist, came to see his buddy Parker and he brought his beautiful family with him.  They were so gracious with their time and posed for the many pictures and chatted with the small crowd that gathered.  And when the crowd dispersed, I was deeply touched that they just hung out and played with their dear children.  Julianna Zobrist was so delightful and the fact that they took time out of their precious family time to join our family in this event was so special.

What touched me the most though, was that my father, mother, sisters, nieces, nephews, and aunts and uncles and my dear sweet grandmother all came out to join the walk.  I kept looking over at how beautiful my grandmother looked sitting under a huge oak tree with a smile full of love on her face and I couldn’t help but to think of my grandpa who passed the same day that Ben Zobrist walked into our lives when Parker got his Make-A-Wish…and there was one person who made so much of this come together for both of these events…Jen Funk.  She works with the Rays, often behind the scenes...and she is an amazingly giving and caring individual.  Thank you Jen! 

When Parker and I were saying prayers that night, Parker said to me “Mom there were a lot of people out there today for me.  It feels good to be surrounded by so much love.”  My thoughts keep going back to my grandpa… who would have thought that the Parker’s Purple Playas are “the most to say the least” and that all we need is “a smile and a few kind words” and that he would have thought that this event was totally “top drawer!”  I am sure he is up in heaven right now with Grandpa Tony, Memere and Pepere thinking how very blessed we are to be surrounded by love!

If you would like to see pictures from the walk please visit these 2 links (and there will be more…my uncle is still editing some) : 

Photographs by Denise Veselka

Photographs by Jane Winstead

Love from our family to all of Parker’s Purple Playas…Together we raised over $15,500.  Join us again, same time, same place, next year!

P.S.   And Happy Birthday Grandma Dianne.  We know you couldn’t walk with us, but hopefully you could share in the experience by reading this.  We love you very much!

From Professional Practice to Parenting a Child with Chronic Illness

Rochelle Lentini (Director of Program-Wide Positive Behavior Support and proud Mom of Logan and Parker)

On behalf of World Autoimmune Arthritis Day (WAAD), I share as a parent of a child with systemic on-set juvenile arthritis (Still’s Disease), but also as a professional who provides training and coaching to educational staff and families on social emotional well being.  I have reflected a lot lately about how life shapes us and leads us in directions, sometimes directions we don’t expect.  And with every change in one’s life there are a set of emotions that come along with that change, such as:  happy, sad, angry, excited, confused, hopeful, worried, anxious, exhausted, overjoyed…  Emotions are to be expected.  What is important is for us to make thoughtful decisions and choices that are not emotionally driven, reactive choices.  And yet, change is hard, whether it is a positive change or a negative change.

Raising a child with a chronic illness is not something most parents would choose to do, yet somehow we manage…somehow we persevere…somehow we flock together…and somehow we become resilient.  I feel incredibly blessed and fortunate to have a career that has equipped me with tools that help our family process and reflect, provides us with tools to guide our children and help them cope (this does impact the entire family), and allows me to team with my husband and make joint decisions.  May is “awareness month” for multiple autoimmune diseases and with WAAD right around the corner on May 20^th, I thought I would share some coping skills, strategies for families and children, and resources that our family embraces and implements while on this juvenile arthritis journey.  Much of this is from my work with the Center on the Social Emotional Foundations of Early Learning (CSEFEL) and the Technical Assistance Center on Social Emotional Interventions (TACSEI).  Strategies and materials were created for distribution and so my hope is that they can benefit some of you as much as they have benefited me and my family.

Skills of resilience every child needs to build a positive self-esteem

• Emotional expression and understanding
• Problem solving
• Coping strategies (due to pain, loss, disappointment)
• Self-advocacy

Tips to build skills in understanding, expressing, and self-regulating emotions

• Talk about your own feelings, as a parent
• Talk about feelings of characters in books, videos, or on TV shows
• Reflect on particular situations and discuss feelings
• Teach new emotion words (i.e., frustrated, disappointed, anxious, confused, hurt, worried, scared, etc.)
• For young children, print visuals of emotions and allow them to point.  Printable visuals at:  http://csefel.vanderbilt.edu/modules/2006/feelingchart.pdf
• Say to your child, “Tell me how you feel.”
• Support and accept your child’s expression of feelings; validate their emotions
• Describe your child’s expression or expressions in books/magazines
• Pretend play using “feeling words” with toys, stuffed animals, puppets, dolls, or action figures
• Draw pictures about feelings
• Model how to cope and stay calm using the Turtle Technique:
• Teach steps on how to control feelings and staying calm
• Step 1:  Recognize your feelings
• Step 2:  Think “stop”
• Step 3: Go inside your shell and take 3 deep breaths
• Step 4:  Come out when calm and think of a good solution (help your child think of solutions such as:  get an adult for help, ask nicely, play together, ignore, say “please stop”, say “please”, share, trade, wait and take turns, talk to an adult, make another choice, take a break, etc.)
• Printable visual steps:  http://csefel.vanderbilt.edu/modules-archive/module2/handouts/7.pdf
• Practice steps frequently when children are not upset (of course when children are upset also use these steps, but that is not the most optimal instructional time and the more children practice a new skill the better they retain that skill)
• Prepare for and help children handle disappointment and/or change
• Most importantly, recognize and comment when your child stays calm to promote new skill use

Teach problem solving steps

1. What is my problem?
2. Think of some solutions (again, help your child think of possible solutions)
3. Will it be safe, fair, and how will others feel?
4. Let’s give it a try.

Printable visual steps for young children:  http://csefel.vanderbilt.edu/resources/strategies/problemsolvingboy.pdf

Self advocacy

• Teach your child to ask for information:  prepare questions together, structure opportunities to practice, debrief together
• Support your child in joining in the discussion:  acknowledge your child’s presence, use his/her name, when appropriate invite your child into the conversation
• Assist your child in understanding options and making meaningful choices:  identify options, make a pro/con list
• Coach your child to challenge unfair or unjust treatment

RESOURCES

For articles and visual supports for families of young children visit the “Center on the Social Emotional Foundations for Early Learning”:  http://csefel.vanderbilt.edu/resources/family.html

For a variety of tools, visual supports, and printable stories for young children visit the “Center on the Social Emotional Foundations for Early Learning”:  http://csefel.vanderbilt.edu/resources/strategies.html

For the “Making Life Easier Series” for parents of young children visit the “Technical Assistance Center on Social Emotional Interventions”:  http://challengingbehavior.org/communities/families.htm

To access visuals for feelings, emotional regulation, problem solving with young children visit the “Head Start Center on Inclusion”:  http://depts.washington.edu/hscenter/teacher-tools#visual

For videos and supports to assist youth visit:  “Talking with Your Doctor and Other Health Professionals”:  http://hctransitions.ichp.ufl.edu/gladd/

For the printable resource, “Envisioning My Future:  A Young Person’s Guide to Health Care Transition” visit:  http://hctransitions.ichp.ufl.edu/pdfs/envisioning_my_future_gray.pdf

For the printable resource “When You are 18, You Are in Charge of Your Life:  Health Care Transition Guide for Young Adults by Children’s Medical Services Network, visit:

http://hctransitions.ichp.ufl.edu/pdfs/cms_wy18_lowres_09.pdf

WAAD website link- http://www.worldautoimmunearthritisday.org/

WAAD registration link- http://events.r20.constantcontact.com/register/event?llr=0&oeidk=a07e5n7i1aq5f98d0e9

IAAM has established World Autoimmune Arthritis Day (WAAD), to be held annually on May 20th, online and during all time zones, making it a 47-hour online event.  This Virtual Convention will unite patients, supporters and nonprofits from around the globe, inviting them to participate in both live and on-demand presentations, scheduled live chat sessions, surveys, live Call to Action posts and access to an online library of downloadable resources that can help them and their supporters in managing their diseases. Thus far, WAAD is registered on 16 health calendars internationally and has already received nonprofit support from over a dozen organizations, including the American College of Rheumatology, the Spondylitis Association of America, Arthritis New Zealand, the International Still’s Disease Foundation and Lupus UK.  As the official Host of this historic event, IAAM invites YOU to be a part of it too. Best of all?  It’s FREE to register!

*IAAM is the official Host and Event Coordinator of World Autoimmune Arthritis Day.  http://www.iaamovement.org/