Tuesday, October 29, 2013

Toy-FULL Tuesday: Trick or Treat!

Trick or treating is a time honored tradition for most kids. 

from Global Hydranencephaly Foundation

  • Picking out a costume.
  • Decorating the house and the yard.
  • Halloween parties, complete with tons of candy and apple bobbing.
from The Mobility Resource

For kids with hydranencephaly, or other similarly limiting conditions, this holiday is more difficult than it is fun.

from The Mobility Resource

  • The weather may be questionable.
  • Trick-or-treating turns in to off road demolition derby when others behave as if they don't see your child in a wheelchair ready to gather their treats.
  • Costumes take a bit more creativity.
  • Candy is not the best treat for our kids.

Our amazing friends at Mommies of Miracles made this trick or treat for ALL initiative possible! Check out the brochure HERE

"Not all kids can eat, but all kids can trick-or-treat!"

Print those out and share them in your community in hopes that others will consider alternative treats for those who cannot eat. 

Some other ways to celebrate  include:

  • Reverse trick-or-treating... when battling the weather just isn't an option, or perhaps sensory overload is a challenge. Well-known friends and family can come to YOUR door with treats for your costumed cutie!
  • Trunk or treating is another alternative that can be much more enjoyable amongst close friends and family in a church or local community parking lot.

However you choose to celebrate, include treats that aren't eats such as:
  • tattoos
  • stickers
  • play-do
  • moon sand
  • window clings
  • glow sticks
  • light-up gadgets
  • textured sensory items
  • music cds
from Global Hydranencephaly Foundation

Friday, October 18, 2013

Fact-Filled Friday: Burnt

shoes and smoke
photo courtesy of Oprah.com
Burn out is a legitimate state of complete and utter emotional exhaustion... stack the medical complexities of children with hydranencephaly, or other similar conditions, on top of the usually challenges of parenting and you can find yourself on burn out overload.

"Women who are the most highly motivated to be good mothers are most at risk for burnout. You have to be committed to parenting and working hard at it in order to burn out. " ~from Ask Dr Sears

By Dore E. Frances PhD
Adoption Journey Talk: The Missing Piece

How to overcome burnoutParent Burn-Out is a legitimate and very real concern for those who have children with any kind of challenging issues.

Frequently, parents of children with special challenges will complain that they feel disappointed, trapped, over-committed, and increasingly unable to cope.

They seem to have lost any satisfaction in the job of parenting their special-needs child. They can’t find ways to relax and renew their energy for what is acknowledged by all to be a very difficult job. Parents are understandably exhausted when they find themselves with children so needy or so difficult to handle that they require constant monitoring. Especially at risk are those parents who have poor or nonexistent support systems. They can’t seem to imagine any options for easing the constant pressure of their obligations and run the real risk of becoming more and more isolated.

For those who are parenting the poorly attached or unattached child, the lack of emotional reciprocity makes things doubly difficult. For those who are parenting the neurologically challenged, there is the added worry that their child may never be able to live independently. It may seem an oversimplification, but one of the most constructive things you can do in these situations is to re-evaluate any expectations you might have about your child. Unfulfilled expectations will only compound your feelings of being trapped and dissatisfied. It is frustrating to know that you are not being successful in changing those around you so they will behave differently.

One of life’s most precious gifts which evaporates the instant you become a parent is solitude. Even when children are trouble-free and absolutely delightful to be around, a parent is never “off duty”. When children are especially needy and difficult to get along with, the absolute lack of solitude and privacy can seem like a relentless invasion. All that emotional pulling and pushing can leave you exhausted and resentful.

Those of who suffer from the Super Parent Syndrome are at particular risk from this problem. It’s a lot easier to be a Super Person when there are no little people depending on you.

It may be very difficult, however, once again, you need to re-evaluate your expectations of yourself against the reality of your current life. Dependents are just that…..dependent, and they eat away at your attention, energy, focus, motivation, and lifestyle. That’s not necessarily a bad thing….it just IS. There is nothing written in stone that says we are only good parents when we subsume our own needs for those of our children’s.

My favorite statistic is that 85% of the benefit we have on our kids is passive. That means you can be a good parent even while you sleep!

It’s impossible that a person’s lifestyle won’t be changed by a dependent and there’s no payoff in experiencing guilt because of the way you feel about that. You can legitimately experience grief and loss, regret, longing for a different kind of life, etc., however, you’ve got to get rid of any guilt because it’s singularly counter-productive. Once you have a more realistic understanding of both the expectations of your children’s behaviors and that of your own, you can then start the real effort of making your life, both emotionally and physically, more comfortable and pleasant. The key to the process is finding time for yourself and away from your children. Send the kids off to bed early so that all of you can have some private, decompression time in the evenings.

There’s nothing wrong with training children to leave your presence when you declare you need some “private Self time”. It’s perfectly legitimate to set up these kinds of boundaries as a self-preservative measure. I know people say that you “should” never remove yourself from attachment disordered kids, however, I don’t agree. There is something to be said for the fact that you are showing them you can go away and they can learn to trust that you’ll come back. Take private walks, go out in the garden and pull weeds after dinner or early in the morning, go into the bathroom and simply close the door for 15 minutes or so and read a magazine or a few pages of a book. I went back to college in order to save my sanity (and my daughter is not adopted). Figure out a way to reconnect with old friends or cultivate new ones. Get involved in something once a week. The most important thing is that you start doing something for yourself. When it helps you feel more whole, take a private mental holiday and just do the minimum for about a week.

These invisible mental holidays (you know you’re doing it yet nobody else does) saved my sanity more times than I care to admit. So, the question is, how can you effectively pull-back? It’s an individual decision. Will a shift in attitude be enough, or do you need some real private time in order to renew yourself?

For me, it required that I spent some time in “solitary”. I’m a writer, so I always had the home office as an escape. I could be at home in case something went amiss, and yet still feel fulfilled.

Attachment disordered children may or may not ever be able to make a real connection with family. Neurologically impaired children are unwritten books and may remain so for years. Getting rid of preconceived notions of what “should” or may happen in the future enables you to start each day without disappointment and it’s a weight lifted off your shoulders.

Some parents unknowingly adopt a child with alcohol-related neurological disabilities (ARND). Their unfulfilled expectations are that they were bringing home a child who could compete on a level playing field with other children their age. As it sometimes turns out, they have significant disabilities with which they will struggle their entire life. It’s a daily challenge for parents as well as for these children. You have to continually remind yourself that life with them must be seen in a realistic light.

Some parents are somewhat disappointed with themselves for feeling this way.

It is okay. Some wish they felt Do differently. There have been many times I have assisted a family with an adopted child who was plagued by that guilt.

I remind them that the child needs to be accepted AS THEY ARE.

That’s not to say it makes the parent feel any better about their feelings or the situation in general, yet it does enable them to do their parenting job to the best of their ability, and that gives them a feeling of self-worth and accomplishment.

Over the years parents and adopted children will learn to accept each other the way they really are and to make the best out of what actually exists. At least that is how it worked for me as an adopted child.

Let me tell you that one of the most important things you need to do is to line up some sitters so you can have at least one night a week to yourselves. When you have no extended family to rely upon, make a concerted effort to do this anyway.

Find people who can come and stay with the children so that you can get away.

Don’t think that just because you have no extended family that it’s impossible to find some help.

Ask at church. Ask all your friends who don’t have extended families what they do. Call a Nanny service. See if there are responsible kids at a local college who would like to sit. Make it a priority!

It can saved your marriage and / or your sanity. More importantly, it will strengthen you as an individual person. After all, when the children are finally and gone, who will still be there? Don’t sacrifice your relationships with others in your life. Avoid the debilitating burn-out that can come with parenting children with challenges. Acknowledge the difficulty of the job you’re doing. Rid yourself of counter-productive expectations about your children. Make sure your expectations of yourself are realistic and constructive. Find ways to have some alone time and make an effort to keep yourself renewed and nurtured. Re-assess your family priorities.

Devote some extra effort to your partner in life and /or to yourself. Reach out for help and support. Keep things in perspective and most of all keep it real!

Wednesday, October 16, 2013

Wordless Wednesday: Trick or Treat!

Later this month I will be sharing some other resources to make celebrating Halloween with your medically complex child a bit easier, but for today I am sharing this freebie printable from some new blogger friends which will make it a little less annoying having to explain why your child is not offering up a hearty "TRICK OR TREAT!!!" followed up with a grand display of good manners by exclaiming "Thank You!!"

A little different approach to our weekly "Wordless Wednesday" post today...

From Megan at Lane 34 Studios:

"Hello everyone! So today's freebie is something near and dear. I have several friends with children that are non-verbal for one reason or another. My boyfriend's son is also non-verbal. In the past I have seen a little tag that floats around the web for these special children. It is not always feasible to pin something to your child and with the way things are these days no one wants their child's name on their shirt either!

So I decided to come up with an updated "card" version that you yourself, or your child can hand out at Mickey's Not so Scary Halloween, in your neighborhood, or at a trunk or treat etc... 

I also decided to not include any specific diagnosis like autism, this enables me to include a broader spectrum of kids and young adults. Non-verbal is not limited to one specific group.
& This would be great for even a child that is just super shy!

It is 8"x10" and will print on any type of paper!

Remember to share it on facebook or pin it to pinterest to get the word out there!"

Monday, October 14, 2013

Meet the Bees Monday: Matty

Meet our new Bee-Buddy: almost 6-month old Matthew, via a beautiful video his sister allowed us to share with you all!

Sunday, October 13, 2013

Community Sunday: Who is In Your Community?

"Objects we ardently pursue bring little happiness when gained; most of our pleasures come from unexpected sources."
~Herbert Spencer 

I often reach out to those outside the special needs community to ponder ideas for adapting life to better accommodate the needs of those IN the special needs community. 

~a plumber who created an adaption to help hold items in place on a stander tray 
~a librarian who had been donated some sensory books that were handmade by someone along the way
~a cafeteria lunch person who had previously worked in a hospital and had extensive knowledge of special diets

And in this case, a university professor who invents a wheelchair to allow those on wheels to dance:

from the Huffington Post

A dance professor turned inventor is changing the lives of kids with disabilities.

Merry Lynn Morris is a professor at the University of South Florida, and she's spent the last seven years building a wheelchair that helps those with disabilities dance. Called 'The Rolling Dance Chair,' it was designed to move seamlessly with the dancer's body, according to a KOB4 report.

Morris has been introducing the wheelchair to children with spina bifida and cerebral palsy in a series of unique dance classes.

"Whoa," exclaimed Jessica Hendricks, a 7-year-old with spina bifida, during her first time in the chair. "This is fun. It can turn?"

The chair moves in the same direction that the dancer is leaning, and can even support a second standing dancer for partner work.

The chair has been in development since 2005, when Morris approached USF's College of Engineering with the idea.

It initially was a sort of sitting Segway, but with the help of engineering students and $150,000 in grants, it eventually became an adept, innovative piece of machinery. Developers have even connected the chair to a smartphone app that can control its movement with a tilt.

Morris described the chair to the Tampa Bay Times as "an extension of dance, not an obstacle." The idea was inspired by her father, who had to undergo extensive physical therapy after a car accident when she was 12. Morris and her mom remember dance sessions as the most helpful part of his recovery.

"Anybody in any body should have the right to dance," Morris told the Tampa Bay Times. "An accident or a disability needn't relegate the people you love to your back, pushing you, telling you where to go."

What obstacle do you need assistance with overcoming? Who in your community could bring the answer? Be open-minded and you will be pleasantly surprised at who will unexpectedly hold the answer!

Thursday, October 10, 2013

Thought-FILLED Thursday: Parenting with a Plan?

An important note to remember, especially when your child carries around a diagnosis that has such a "matter-of-fact" prognosis attached to it, is this:

Just as we celebrate the uniqueness of typically developing children, children with hydranencephaly are also very much unique! There is no way to predetermine what a child is capable of or what will work best in which circumstances. As a parent, all you can do is let your child be the guide while you serve as their voice and their advocate. Fight for them. Feed them some of your strength while they share their determination with you. Listen to what they are telling you, without saying anything at all. Together you'll battle the storms and appreciate the sunshine that much more! 

October's thought of the  month from our friends at You and Your Disabled Child, on Facebook: 

"There is no right and wrong way to raise a child with special needs - what works for one child might not for another, what one family can handle another may not be able to, what makes life easier for one parent might make it even more difficult for another. No two children are exactly the same, neither are any two families. Professionals and other parents can make suggestions and offer advice but should be careful not to preach, judge or tell them what to do - and should definitely not be put out if the advice they give is ignored. They might do things differently but that doesn't mean it's a better way. Many parents are already feeling inadequate and don't need to be told by others that what they are doing is wrong or not good enough. Everyone has their own way of coping with a situation, and if it's working for them that is just fine - as I said, there is no right or wrong way, it all depends on the individual circumstances."

Friday, October 4, 2013

Fact-Filled Friday: Doctors are not Experts

While those in our own family support community understand the fact that those in the medical community are merely "practicing" medicine, far too many individuals place their full trust in the hands of the individuals holding the degree in medicine. 

"I was sent to a neonatologist during my pregnancy because they are an expert. 
Whatever they say, HAS to be right... right?"

Most often during diagnosis a doctor advises: 


based upon the fact that the child will not:



ultimately, babies diagnosed with hydranencephaly and other similarly devastating diagnoses will not even 


not a life beyond a vegetative state; not one without necessary medical equipment to sustain life (that's what those pesky medical textbooks we can't seem to find a way to change, read anyways!)

Think this doesn't happen in the US? 

Think these stories only happen in smaller countries where medical knowledge is much more limited?

think again

It happens DAILY, likely multiple times but we have no way of knowing the numbers because too many babies are aborted and  not counted in to the statistics...

**let me point out that while some children with hydranencephaly do have extreme cases and their lives are more limited than others... several children live a "healthy" life, despite the obvious lack of the cerebral hemispheres that are "supposed" to be mandatory for life. While not a life without limitations, they certainly are not suffering through a life that is not worthy of a chance**

~I'm not here to debate the pro-life vs. pro-choice stance, but I believe wholeheartedly that parents should be given a full range of information and allowed to make the best decision for them. I can only speak for myself, as well as a few others who had similar pregnancy stories as my own, in saying that the doctors did NOT give a full range of information; but instead, presented the only scenario as death of my baby occurring before my pregnancy came to term whether it was voluntary or involuntary. Essentially, a "medically induced termination of pregnancy" was given as the choice option... and my choice to continue the pregnancy was not one that was supported.

Most recently, this article came through my email inbox:

Read it, then let's chat facts in the comments here on our blog, on our Facebook page, or over on Twitter! What would YOU do if you were faced with a terminal diagnosis for your unborn child and the doctors presented the option of termination as the "best" most "advisable" option (for those who have not faced this decision already, of course, and if you have... would you choose differently?)

Two Years Later: Boy Who Doctors Said Would Never Smile Now Lights Up a Room

by Nancy Flanders | Washington, DC | LifeNews.com | 10/1/13 5:48 PM
Doctors had all but convinced Jen and Brad Mckinstry that they should abort their son Colton. He had been diagnosed with hydrocephalus, the buildup of fluid in the ventricles within the brain, and the prognosis was anything but good. In fact, doctors were certain that their baby boy wouldn’t live. But on the off chance that he did survive his birth, doctors said he would be a “vegetable.”
“We were told that we should terminate our pregnancy with Colton seven times,” explains Mrs. Mckinstry, “and by three different doctors. The first time they told us to terminate the pregnancy was the hardest because it was all such a shock to us. The doctor was trying to tell me about his brain disorder and I couldn’t even hear him. Everything was blurry and I felt so light headed. About a week later, we went to another doctor […] and he told us that it would be best to terminate the pregnancy and that Colton wouldn’t make it. If he did make it, he would […] never laugh or smile.”
Although they didn’t want to terminate, the couple wondered if that would be what was best for their son. They had been told it would be selfish to allow their son to live and wanted to do what was best for him. Ultimately, they turned to God and realized that Colton wasn’t created just to be aborted, that he was create for a reason. One of the reasons may just be to show the world that doctors can make mistakes too. And in Colton’s case, they made a big one.
Two and a half years after that initial diagnosis, Colton is a fun-loving, sweet boy who enjoys climbing on everything, playing with his sisters, and being silly. After birth he had surgery to put a shunt in his brain to drain the fluid, and he has since undergone numerous surgeries. He has another surgery coming up that will include reconstruction of his skull. Colton participates in occupational therapy and physical therapy, and uses a walker to get around easier. But through it all, he’s been as active as any little boy, even walking on his own, something doctors never expected. His parents couldn’t be more proud.
“The doctors are shocked,” says Mrs. Mckinstry, “and keeping telling us that he is doing amazingly well and way better than even the best case scenario they ever thought!”
The Mckinstrys’ doctors are not the first and won’t be the last to give parents inaccurate information. Recently, doctors told U.S. Rep Jaime Herrera-Beutler and her husband Dan that their unborn daughter would not survive. This month newborn Abigail became the first baby ever to survive Potter’s Syndrome. Plus, there have been numerous cases of healthy children being aborted after being misdiagnosed with a fetal abnormality.
Colton’s life and the lives of each of these children are proof that doctors make mistakes too. After all, tests can only tell them so much and prenatal testing can give many false positives. And better treatments and interventions are being discovered all the time. Any parent who receives a prenatal diagnosis of their child should get a second opinion, and always love their child enough to give him a chance. Colton is living, thriving, smiling proof of that.

LifeNews Note: Nancy is a work at home mom who writes about parenting, special needs children, and the right to life. She is the lucky mother of two spirited little girls, one who has cystic fibrosis, and she spends any free moment she can find fundraising for a cure for CF. You can read her personal blog at www.ChronicAdmissions.com. Reprinted from Live Action News.

Wednesday, October 2, 2013

World Cerebral Palsy Awareness Day

What is cerebral palsy?

There are 17 million people across the world living with cerebral palsy (CP). Another 350 million people are closely connected to a child or adult with CP. It is the most common physical disability in childhood.

CP is a permanent disability that affects movement. Its impact can range from a weakness in one hand, to almost a complete lack of voluntary movement.

It is a complex disability: 1 in 4 children with CP cannot talk, 1 in 3 cannot walk, 1 in 2 have an intellectual disability, 1 in 4 have epilepsy.*

CP is a lifelong disability and there is no known cure.

click the photo to see the original flyer to share/print for personal use

So, what does this have to do with hydranencephaly?

Children who are given a diagnosis of ANY neurological condition which affects the way the muscles work are under the "umbrella" diagnosis of CP... thus, those with hydranencephaly also have cerebral palsy.

Learn more about World Cerebral Palsy Day by visiting their website

Wordless Wednesday: Just Another Day in the Life of a Bee...