Tag Archives: blog

Interview with Jolene Philo: A Different Dream for My Child

As a new blogger, I quickly discovered Jolene Philo’s, Different Dream during my search forother parent bloggers of children with disabilities.  Different Dream soon became a reliable and sensible resource for my own special needs life.  I have been honored by being permitted an early look at A Different Dream for My Child.  


Picking up the book, I  was pleased to find the same balance and careI know from her blog which would comfort and counsel any special needs parent through their new reality of life.  The guide is designed to help parents newly parenting a special needs child to stay on the path and become strong advocates for their child and family.  


I thank Ms. Philo for allowing me theopportunity to address questions to her prior to the book launch.  Thank you so much for your time andinspiration!

1.   Seriouschildhood illness and the needs of parents makes people feel uncomfortable. Howdo you find the strength to reach beyond your own experiences to help thespecial needs community?

Jolene: My strength comes from thecompassion inherent in shared experience. The memory of the isolation myhusband I experienced while parenting our son with special needs compels me toreach out. Our son is now well and whole. I’ve been blessed with resources,ability, and training to reach out to others. So I do it.

2.   In the initial aftermath of the birth of aspecial needs child, new parents are unlikely to have the time and energy topick up your guide prior to the first decisions they must make… if you wereto make a list of the most important lessons you would like them to know intheir first days would you please share them here?

Jolene: You’re absolutely right. Most parents don’t have access to Different Dream Parenting or any other book immediately after diagnosis. I advise parents facing unexpected, immediate decisions to pray together, then assess the options, choose as best they can under the circumstances, and trust God to deal with the rest. Once the immediate decisions are taken care of, parents should contact their insurance company, if the situation warrants that, to update them. After that, parents must tap into an emotional and spiritual support system. They can start a CaringBridge page to update others and receive encouraging notes. They might contact a pastor. Of course, I’d love to have them visit DifferentDream.com for resources and support, too.

3.   Whena child has serious illness or condition, the focus is on the child, but the family as a whole  needs support, too.  My own family now receives services through alocal hospice program for children with life altering illness and their families.  Have you found similar programs available throughout the country and if so are there any that come to mind as exceptional?

Jolene: While doing the research for Different Dream Parenting, I interviewed the coordinator of the Pain and Palliative Care department at Children’s Hospitals of Minnesota, Stacy Remke.(Most children’s hospitals now substitute “pain and palliative care” for“hospice” because many children now live many years with conditions once considered terminal.) Their program is the model for programs around the country. Most large university and children’s hospitals should have a hospice,pain and palliative care, grief, or bereavement department. I suggest parents find the one closest to them geographically and tap into it.

4.   The outward changes in the lives of parents of very sick children are visible. Butwhat internal changes do the parents experience? How does it affect them spiritually and emotionally?

Jolene: Let’s talk about thespiritual effects first. Obviously, these parents are going to question Godabout why he allows innocent children to get sick, suffer, and even die. Theirfaith will be shaken. Either they will resolve those questions and draw closerto God, or they will lose faith and turn away from him. It’s impossible toaddress those questions here, but they are dealt with Different Dream Parenting.

Emotionally, many parents of kidswith special needs wrestle with grief and guilt. These are perfectly normalemotions for their circumstances, but they don’t realize that. Again, those issues are discussed in detail in Different Dream Parenting.

5.   If it’s hard to approach the parents of a seriously ill child, it’s doubly difficult to know what to say to parents who have lost a child. How do we approach them? What should and shouldn’t we say and do?

Jolene: The most important thingyou can do is to use the child’s name. Many people shy away from saying the child’s name because they think it will hurt the parents. But parents who havelost children tell me they love to hear their child’s name. Doing so is areminder that their child lived a life that mattered.

Don’t say “I know how you feel”unless you’ve lost a child and do know how they feel. Other than that, just askthem if they want to talk and follow their lead. Send cards on the child’s birthday, the anniversary of the diagnosis, the anniversary of the death, onMother’s and Father’s Day. Send cards for years and years and years. Finally,just be a friend. Spend time with them. Go places. Have fun. Let them cry. Letthem laugh.

6.   Professionalswho come into our lives for our children are educate us to be the best parentwe can to help our child.  You mentionthat as parents of special needs children we educate the professionals as well.  Do you have any advice for parents strugglingto communicate their needs and desires for their child’s future?

Jolene: I suggest parents writedown their hopes and goals for their children’s futures and share them. As soonas or if kids can verbalize their own hopes and goals, write them down andshare them, too. Also, make a portfolio for your child. Include items yourchild has created and even video of your child playing or interacting at home.That can give educators a different view of your child. (As a former teacher, Iknow kids behave differently at home and school.)

7.   Itis often difficult for the rest of the family – siblings, grandparents, aunts,uncles, and cousins to understand what the special needs family isexperiencing.  How do parents educate thesefamily members and perhaps friends to be the support system they need?
Jolene: Different Dream Parenting has an entire chapter on the subject.It’s hard to condense it into a paragraph! Siblings need alone time withparents, especially if the special needs sibling requires a great deal of care.The best resource around is SibShops, founded by Don Meyer. (www.siblingsupport.org)Here are a few tips for educating extended family members:
·        email frequent  updates
·        refer them to websites about thechild’s condition
·        ask them to go to doctor’sappointments or therapy sessions with you
arrange for some adult-only timewith them now and then

11. Pleaseshare some of your own spiritual journey. You have a very strong faith base; when your own child suffered atraumatic birth did you have the relationship to God you needed at thetime?  If not, please tell me more aboutthe process of your relationship?

Jolene: My husband and I were 25when our son was born and had been Christians for many years. But we lived in avery remote area with very little spiritual support. My husband handledeverything much better than I did. For several months, I was very anxious andangry. One day I was so tired and frustrated, I threw a plastic glass on thekitchen floor and it shattered. At that moment, God whispered, “What are you soafraid of Jolene?” When I realized my fear was that my baby would die and Godassured me that if that happened, my baby would immediately be in heaven withhim, my anxiety was gone. There was nothing to fear.

Another pivotal moment came manyyears later when our son went through a period of separation from us. (He wassuffering from undiagnosed post-traumatic stress disorder which has since beensuccessfully treated.) God made it very clear that he understood exactly howboth my son and I felt. When Christ was on the cross, God the Father and Godthe Son were separated from one another. A God who loved me enough to come toearth and experience what I would one day experience is a God I can trust andfollow. Since then Romans 8:32 has been a verse that brings both hope andcomfort to me:

ForHe who did not spare His own Son, but delivered Him up for us all, how will Henot with Him freely give us all things? My hope isthat other parents will also find hope and comfort in the God who understandsexactly how they and their child feels.

Thank you Jolene for sharing with us!
Your dedication to these families is inspirational.
Stacie

Different Dream Parenting is available at 10% off the retail price:

Accepting Entries for Different Dream Parenting

Different Dream Parenting Book Giveaway

Please enter the comments below  and share your name and your preferred contact information.  You may also use the email button instead to the right of the page under “Stacie’s & John’s Links.”  Should you be willing, I would love to hear a little about the child in your life along with your entry.  Multiple entries are welcome with additional comments.  Giveaway entries will be accepted through November 30th.  The winner will be determined by a drawing with Riley’s help.


The book is available at 10% off the retail price:
 
 
Thanksgiving Day 2011
Hope you all enjoyed your holiday!

Must Read

I am very fortunate to have an early copy of Different Dream Parenting: A Practical Guide to Raising A Child With Special Needs by Jolene Philo. I am eagerly looking forward to finishing the book and putting the knowledge to use… oh, and filling you in too!  Meanwhile, I strongly recommend that you explore her blog, Different Dream, which is a sensitive and thoughtful resource for special needs.

Cinnamon’s Spicy Life Awards Riley’s Smile the Liebster Blog!

The Liebster Blog Award!
Thank you so much Cinnamon, I am honored to be in your company!
You always bring me a smile, even when you share life’s challenges.
You have my full admiration.
Dear Reader, please hop on back to Cinnamon’s Spicy Life and check her out… you’ll be glad you did.
I love awards!  The funny thing is that I’m not writing or even blogging really.  I’m just trying to wrap my head around our life.  Hopefully, I help someone else get special needs along the way.
On with business…
in Cinnamon’s words the Liebster Award works like this:



“… awards are wonderful.  It shows that someone else thinks that your writing is worth a crap, and that they want someone else to check you out too.  The ONLY downside of these awards, is that you must pass it along.  In this case, to 5 other bloggers.  They should have less than 200 followers.  This award is designed to help boost their readership by encouraging others to follow them.  BUT, that is the hard part.  Finding new bloggers to help.  Most of the ones that I follow and think are really great bloggers, already have huge followings….because they are so awesome.”

Here’s the rules for this award.

1. Copy and paste the award on your blog.
2. Thank the giver and link back to the blogger who gave it to you.
3. Reveal your top 5 picks and let them know by leaving a comment on their blog.
4. Hope that your followers will spread the love to other bloggers.
You may not have noticed… but I have a theme… special needs.  As I mentioned earlier today, it rattles around my head.  I would like to pass on the award to some of the special needs blogs which I suspect to be under 200 followers (though it can be hard to tell for sure).

Today’s Liebster Blog Awards from Riley’s Smile

 Flight Platform Living
Photobucket


About the Small Stuff


I am Fearfully and Wonderfully Made


Free As Trees


Life with a Severely Disabled Child

and since Cinnamon awarded only two I am stealing hers and adding


Special Happens

Thank you to each one of you for
being part of my blogging experience!
Stacie

Dare to Share Linking on Sunday

Riley Met A Goal

The Versatile Blogger Award for Riley’s Smile

Rileys-Smile? The Versatile Blogger Award?

 

Woot!  My first award.
My little niche blog has The Versatile Blogger!
I am SO EXCITED!

Can I make this button any bigger?
How will it look on my front door?
Where shall I have my t-shirt made?
Hey, the green will go well on Riley’s chair.
How will it look on our front door?

Thank you to Melanie of My Regular Life for giving me this award!
I am honored to be in your company.
Check out My Regular Life, you’ll become a regular real fast.

Now – to the rules of accepting the Versatile Blogger Award:  
  1. Thank the person who gave the award and link back to them in your post. 
  2. Share 7 things about yourself. 
  3. Pass this award along to 15 recently discovered blogs.

7 Things about Me:

  1. Born in Ankara, Turkey thanks to the US Air Force.
  2. Many of my younger years were spent on an Angus Farm called Rocky Forge Farm in MD.
  3. As a junior member of the Angus Cattle Association, I owned and showed the Pennsylvania State Cow & Calf Junior Champions… somewhere in the 80s:-)  No computer then to record these momentous occasions so I’ll have to detail that later.
  4. For several years in the early 90s I Captained the annual Will Rogers Beach Cleanup for the International Coastal Cleanup and John learned real fast how to weigh thousands of pounds of trash and organize 2000 people in moments when he came along.
  5. I am passionate for wild and exotic animal rescues especially the Wildlife Waystation for allowing us the privilege of being part of their team.
  6. Hopefully I will continue scuba diving with my husband for the rest of my life.
  7. My Spirit Guide, described by Candyce, appears in ancient garb with long, straight dark hair.  She is adamant that I have much to learn.


Now – on to 15 recently discovered blogs in no particular order…. 
oh there are so many I enjoy…. decisions, decisions!
Check these out!!!!!!!!!!! You will be glad you visited.
    1.  Butterfly Dreams
    2.  CoffeeRocketFairyTale
    3.  I am a broken man/You can’t break me
    4.  Kat’s Cafe
    5.  Magpie Girl
    6.  Hope4Katy
    7.  Single Dad/Disabled Daughter
    8.  TherExtras
    9.  Bug Safari – yes I have boys:-)
    10.  Handbook of Nature Study
    11.  Radical Ramblings and Thoughts of a Southern Girl
    12.  The Perfect Line
    13.  CinfulCinnamon
    14.  Serendipity
    15.  Makenzies Miracle

 

    OH DEAR… I NEED ANOTHER AWARD…
    I HAVE 15 MORE IN MIND!
    We are all special… by Stacie Wiesenbaugh

My Regular Life: Who? ME?

My Regular Life: Who? ME?: “So… someone DOES read my meanderings! Woot! This is exciting stuff, as it is my first award. Thank you so much Ciao Mama , of Mommy Bag…”

State of July

Keeping up with my blog is a challenge I gladly accept, however it may be more than I should have taken on.  This mommy is feeling a little sad and run down and really shouldn’t share it all, yet I blog on.  Visiting other special needs blogs,I find many of them have autistic children who at least feed themselves or regularly scheduled nursing visits to get them through the day or some sleep at night.  There is the occasional blog where the writer/parent is in the most difficult stage of their child’s disability and has found this one outlet to vent.

Speaking  of other blogs, here is an honest account ofa special needs child finding his smile at Christians Journey. Also, I strongly recommend a video on Youtube that is definitely worth watching and sharing, The Strongest Dad in the World.
Do not mistake me, there are many moments to be grateful for in the past several days.  First on my mind, John and I had some fun together!  Really.  We did. I think it’s been a year since I was out scuba diving last.  Our very precious respite hours were arranged through Partner’s In Care (PIC), bringing Miss Debbie to watch over Riley.  Ronan spent the day with a schoolmate.  John loaded up the car and off we went to Venice for a day of fossil diving.  John got me aboard The Shark Tooth Guy’s kayak and he swam alongside.  Strangely he was winded long before me:-)  Visibility was dreadful and John searched until discovering that the blocks (an artificial reef area) off Alhambra had at least 1-2 feet of visibility.  I held onto him most of the time but frightened him quite a bit by getting lost at one point.  I was lost, he was worried.  After lecturing me above, he recovered and we had quite a nice day together.  I regrettably supplied lovely fodder for The Shark Tooth Guys facebook page.  My first return into the kayak did not go smoothly, not that I expected it to be graceful.  John coached me on how to maneuver myself back into the kayak after he lifted all my diving equipment back in for me.  I tried to push my weight toward the far side but managed to tip the kayak swiftly into my face and now sport a fat lip.  The triumph was that we didn’t lose any equipment into the ocean depths!  Not so bad then.
Here is the weekend’s fossil collection.  This is a riot, everything in our lives now includes a burp cloth, one of the many cloth diapers we use to be prepared for Riley.  I leave trails of them everywhere I go and now they are even used for photo backgrounds.
Fourth of July we stayed home.  The big activities of the day was swimming.  Ronan was determined to have time in the pool with Daddy. I don’t believe he noticed the deluge of rain, but I know John did.
To the other sad and run down special needs parents and caregivers searching for your child’s smile wherever you are, I invite you to share your story.  I see you visit silently from all areas of my little widget globe.  No judgment from me.  This is simply a place to paint a portrait of the special needs life.  Send me a comment and we’ll work it out.
We are all special… thank you for stopping by, Stacie.

Here is a discussion on inclusion by Galen which all special needs parents debate.
Since I am really into sharing today, a special needs mom shares her heartache on Serendipity.

One more interesting link for you, The Amazing Art of Disabled Artists.

Carnival Ride – Submission to "Butterfly Dreams" Disability Carnival Ride

My subject haunts me.  I cannot get it out of my head and I cannot resolve it.  Possibly it is the reason I blog.
Do I blog about special needs, yes.  However, my original motivation to blog was not the special needs by itself and the Carnival Ride it put us on.  My motivation to blog was to communicate beyond my little family that special needs does indeed need support beyond the family.  Why must I communicate this?  I share our experiences because our community abandoned us.  Perhaps, I thought in my naivety, I could now help those just outside some other special needs circle to understand this special needs status a little more thoroughly.  Yes, certainly naive.
Maybe I simply do not understand Community.
I looked it up:

COMMUNITY    com·mu·ni·ty: noun,often attributive\kə-ˈmyü-nə-tē\

1 : a unified body of individuals: as
 b: the people with common interests living in a particular area; broadly: the area itself <the problems of a large community>
 c: an interacting population of various kinds of individuals (as species) in a common location
d: a group of people with a common characteristic or interest living together within a larger society <a community of retired persons>
 e: a group linked by a common policy
 f: a body of persons or nations having a common history or common social, economic, and political interests <the international community>
 g: a body of persons of common and especially professional interests scattered through a larger society <the academic community>
2 : society at large
3 a: joint ownership or participation <community of goods>
 b: common character : likeness <community of interests>
 c: social activity : fellowship
d: a social state or condition
Pausing from my task, I discovered this video on my facebook page:
Did our community intend to abandon us?  No, likely not.Like the squirrel there is a community just beyond reach… watching.  And eventually one or two of the watchers step up and make a difference.
But the day happened.  One day John and I were a couple with friends, careers, extended family, volunteerism, activities involving many more people beyond the two of us.  The next day my healthy pregnancy ended with Riley suffering an in utero Grade IV brain hemorrhage.  No neighbor was available to help me to the hospital as I knew I was in far too much pain to take myself.  I took a taxi…. one very late, lost and English free taxi. John rushed to meet me while no one he worked with was available to pick up the slack and he continued to field emergency pages throughout our own emergency.
Where was our community?
Here we are perhaps 24 or more hours beyond the emergency c-section holding Riley for the very first time.  It took a nurse 45 minutes to arrange all the tubes and wires to make this happen.  I believe this to have been arount 3 am on Aug. 30, 2002.  Santa Monica Hospital NICU.
Our community was myself, John and now a very ill child.
That was our community and today we are four.
This is the community you trust and rely on.  This is the community that will be there for each other regardless.  We are not completely isolated, we do stretch a little beyond this especially with our mom’s around and it changes shape a little.  This however does not change my feelings of abandonment.
Please forgive me reader if you are disturbed by my perception of community.    My experience has brought me to this conviction.  How do I move beyond this limitation and should I?  Am I now capable of being part of a larger community?  Is not this the reason I post this little niche blog?  I am reaching out to a more extensive community, yet I reserve a complete picture.  It is now clear to me that community is a blog subject that I must pursue and I hope that you will understand that this blog is also about the healing process.  This is my attempt to be community for those other special needs families who need it as well.
I invite you to defend, argue or share your thoughts on community with me.  This is my experience and I cannot present it as more than I believe it to be.

It’s A Mad World

We are all special…. by Stacie

Please visit Butterfly Dreams to view more submissions on Community.  I do hope they are far more positive than mine.

Day Number Four

This is a reminder of the reason I blog.  This blog is not about bemoaning our situation.  It is intended to give those just on the outside of a special needs family a glimpse inside.  Hopefully, I may help give a little insight into what may be behind all that frustration, hopelessness and the closed door that they may be encountering with another special needs family.
Today it is time for Riley to return to school.  He recovers from illness so much faster than he used to, but it is still quite challenging.   He is not 100% and I am certain to hear in his report for the day that he was sleepy, snotty, coughed and was not himself.  He is being himself, just the self that is mostly reserved for home.
Today he needs to get back to activity and stimulation that I cannot provide.  Also, I need a few hours without him in my arms.  My left forearm aches from the weight of him.  I feel the rounding of my spine from hugging him to me.  A few hours rest before launching into the weekend with Riley will help it be a much more pleasant weekend for all of us.  Errands without Riley would be helpful as well.  None of this happened.  Received a call from school before 10 am while on the way to run errands; he’s running a fever and must go home.  Thankfully, Jamie and Alberto at the school are willing to load the wheelchair with good spirit each time I arrive without the ramp which allows me to handle it myself.  I am very grateful that they will take the time and energy and always with kindness and gentleness.  Riley has returned home and is resting a moment… not very quietly though, lol.  But then, he wouldn’t be Riley if it was quietly.  Even when he’s ill… he is still the sweetest child imaginable.
Still need to get in the laundry for those sheets of Riley’s.  Not one set today but two.  We have the hardest working washing machine to be found outside of a laundromat.
 Riley art work from ESE class above.

Thank you to those in our daily lives willing to spend a few moment on my blog.  It means a lot to me.  Today I am grateful to Maria at the pharmacy for the time to see what it is all about here at Riley’s Smile!  Thank you Maria.

Powered by WordPress | Rileys Smile