Our Life

It feels like we are drowning again.  John and I have been on catch up ever since the trauma of Riley's birth and the challenging life it left in its wake.

John did an amazing job as The Bootstrap Boogie volunteer photographer last Saturday evening.  Our computer is now filled with revelers in our barn and on the mechanical bull.  We expect to discover some of the shots in the Naples News this week.  Now we may need to redefine "tired" when it comes to John.

There has been plenty of stress and not the least of it being health.  Riley had a long challenging weekend - no one needs those details.  Not long ago John suffered a bad ear infection which we treated with antibiotics.  We thought it was taken care of... We also kept him from his passion during the healing process and he has not been diving in over two months.  Sunday evening his one and only filling fell out which was very strange.  Monday morning, while waiting for a flat repair he decided to walk over to the dentist.... missing work all the while.  He then discovered the infection and spread throughout his sinuses and was destroying his teeth as well.  He has now had a root canal and will be having a crown, another round of medication, and we hope that no other teeth meet the same fate.

In the meantime, I am struggling with the demands of taking Riley so frequently to meet with medical specialists.  Monday was the Pulmonologist.  It took the entire morning and as you can expect that was all driving and waiting.  Tomorrow is the Opthalmologist, but I find I must cancel.  I cannot manage it right now.  It's all about tracking and covering every one's butt.  But, it's at the expense of Riley's energy, my time and energy, the wear and tear on the jeep and of course the incredible cost of gasoline.  Do these sound like legitimate excuses.  Likely not.  But at some point we should get to live our lives rather than shuttling around to doctor's offices.

Not feeling so special today... Stacie

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.

Appointments and Illness

There is so much I have planned for this blog and so much I want to say... However, there are a few problems getting in my way: primarily, time and energy.

On Monday Riley had his annual pediatric check up.  He did really well.  He is always so cooperative and pleasant.  This year, we opted to give him a flu shot.  Yes, it's controversial.  However, caring for a sick child with multiple disabilities is one of the saddest and most difficult experiences a person may ever encounter.  Trust me on this.  I've done it and I don't like putting Riley or any of the family through it if it can be helped.  A sick typically developing child may be challenging but it is nothing compared to going through it with special needs.

Our pediatrician is wonderful.  One thing we always cover is the well-being of Riley's parents - yep, that's John and I.  We ride an emotional roller coaster.  This is another on-going subject that I have been avoiding.  Admittedly, we are challenged by our role in life and being 9 years behind.  I do not actually care to delve into this today - in fact, I am unsure when I care to get into this.  For now, let's leave it at the fact that being a Special Needs Family is not particularly easy.  The conversation went on that some do handle it and some do not - it seems to be some individual parents are stronger than others.  I object.  I believe that it is far more than simply can you handle special needs or not...

The special needs community frequently uses the phrase "a bullet is a bullet."  Really, I do not think all bullets strike the same.  When your child can get him or herself to the table eat unaided, I do not believe the bullet did the same damage as all the others.  Fine, object with me.  This is my observation and this is how I feel. Perhaps all bullets are not created equally.

A few hours after a good report with Pediatrician, Riley came down with a flu.  As usual, joke is on us.  It has been a rough couple days.  Riding Monday evening had to be cut short as he began to whine as he was jostled around.  I happened to be side-walking with another girl in the class as I happened to be a little taller to be alongside her horse and the other available volunteer could reach Riley: my very first direct experience with any other special needs rider.  This was another surprise to me.  The rider also had multiple disabilities, and she was considerably older and large than Riley.  I had to mentally brace myself for the next half hour of hard work.  To my great surprise, she sat up herself and held her reigns.  I was simply there for safety.  No leaning on me.  No sneezing on me.  No pushing arms and elbows into place for proper weight-bearing.  This was unbelievably easy.  Could I possibly say to her family, "Wow, she's easy to work with!"  Somehow, I doubt they would agree.  Could they possibly know that I found side-walking with their child to be a breeze?

Oh dear, that paragraph got all sidetracked!  Where was I going with that?  Riley was sick.  And was he sick.  I was replaced as a side-walker to remove Riley from the ring.  Gathered up my people: my Mom, Ronan and neighbor Annie who now volunteers helping to groom and tack while earning her high school community service hours.  Then on home we went.  Riley and I were up and down throughout the night to keep his fever under control and attempt to stop the incredible leg tremors - oh, I know I've talked about tremors here and there in this blog - I better tag them because they're important.  When we weren't under the fan we were in my bed, my arms wrapped around him reaching on each side to pull up on the toes of both feet in an attempt to calm the tremors, but unfortunately adding my heat to his in the process.  Any wonder why some parents keep their special needs children apart from the rest of us... illness is truly horrible and this wasn't even a particularly bad event.

A rare event: Riley napping, and alone in his bed yet.

This has happened perhaps five times at the most in his lifetime.

Couple of posts to share today...
A post on respite for families - it's a lifesaver, I promise: Respite: An Interval of Rest by Special Needs Ministry.
To my great relief I am not the only parent deserving of the title - Mother's from Hell.

There was more to say, but my time is up.  At 3:30 pm my day is done as the end of the school day has arrived.  Well, I hope there aren't too many typo's and such, because this is a blog and I'm moving on with my day.

We are all special... I think... though I complain and want to compare bullets with you... by Stacie Wiesenbaugh

How to Throw the Best Children's Party

To throw a great children's party plan ahead, send out your invitations early, ask your child what they would like to do, have some sort of theme and organise some entertainment.

 

Being organized is the key to throwing a great children's party, so plan ahead and don't leave it to the last minute. Ask your child what they would like to do for their party, and if the idea isn't too outrageous, consider going along with whatever it is they would like to do. You might find that there is some activity that is all the rage with the kids at the moment, so it will save you having to dream up something special. With really young children party games at home are still popular, but children about eight years and older generally like a bit more entertainment. There are plenty of party hire ideas, and depending on their age, you may choose to organise a petting zoo, a clown, have a fairy party with a visiting guest or have a snake handler provide the entertainment.

Ask your child what they want

Unless the idea is completely ridiculous or way over your budget, you might want to consider taking the advice of your child in regards to what they would like to do for their party. Often there is some playhouse or park that is popular with the kids at school, or they have been to a party somewhere and they would like to have their party at the same place. Perhaps they have a few ideas about what they would like to eat or when they want to have it. It is their party after all so it doesn't hurt to find out what they want to do.

Invitations

Choose invitations early and set a date as soon as you can. If your child is old enough they will be able to distribute them amongst their friends, but if you feel that they might not reach the intended party guests you could send them by mail or email. You might be in contact with the parents of your child's friends via a social networking site, so you could let them know this way, or sending around a text message is just as effective.

Theme

Choosing a theme for a child's party can be a great idea because it then sets the tone for the whole event. If you choose a theme you can then tie in the invitations, have children dressed up in costumes, have food and decorations to suit and even provide entertainment that all matches in. For younger girls you might want to have a fairy party, a princess party or have a pink party, where absolutely everything and everyone is pink. Older girls might like a disco or to come dressed up as their favourite television or movie characters. Boys are happy with pirate themes, spooky parties or having some sort of sporting theme. Older boys would probably not like a theme so much, but rather would like to go somewhere like a go-karting track or skate park.

Entertainment

Children's parties often seem to have fairly extravagant entertainment nowadays, but you don't need to do this if your budget won't allow. Younger children are happy with party games like 'Pass the parcel' or 'Pin the tail on the donkey'. You can hire all sorts of different entertainment, from clowns that do balloon animals, to having a fairy or princess arriving to delight little girls, or having a mobile animal farm in your backyard. A lot of children's magazines have advertisements towards the back with many different party entertainment ideas.

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Inside These Lines

Love life and be gentle: 31 for 21 Ten Commandments for Helping Parents w...

Love life and be gentle: 31 for 21 Ten Commandments for Helping Parents w...: Have you ever wondered what parents of a child with special needs wants to here about their child from friends, family members, and strang...

October 2011 Recommendations

Just realized that I am even behind in my monthly recommendations.  It appears to be November and here I am sharing the best of October recommendations.

I've been in scramble mode just getting through the day.
There has been plenty of decorating driven by Ronan.  They designed a very cool jack-o-lantern that began to mold in a minute despite our prevention efforts.

I attended Candy's Meditation at Debby's home last Thursday.

 Also, as a family we had a wonderful time at friends for a weekend  Halloween party.

Riley came home wearing a sticker, "Say NO to Drugs!"  The very next morning I said yes to drugs with Diastat to stop a seizure.

 Please explore my recommendations, in no particular order so just see what catches your attention.  These wonderful writers offer insight and inspiration.  I invite you to return here with your own insights and comments.  I thank you for stepping along a little on our journey!  Stacie


Creative
Capturing Special Children

Books & Resources

No Ordinary Boy
Film: Willowbrook 
The Noodle

Our Life

Trained Idiot
Einstein Syndrome 
Smallest Wingless 
Amazing Things We Do 
Note to Self: Open Your Eyes
Gunning the Emotions Engine 
I Know Different 
Luxury
Notes From A Dragon Mom: New York Times
A Different Road
Mercy Me - Hold Fast 
"i" is for isolation 
Being a Foreigner In A Foreign Land 
Simply Morons

Action
Corkscrew Boundless Playground
Best Buddies
Teaching Kids with Special Needs to Cope with Bullying
Special Needs Financial Guide 
Register to Vote - Florida Div. of Elections 
Florida Unites is launching an aggressive campaign to get people who are interested in disability issues to vote.

Relating
Questions 

Education
I'm Not Your Enemy
Homework Solutions