Tuesday, March 26, 2013

Toy-FULL Tuesday: Molly & Milly & Bennett too!

Our friends at Molly & Milly's Zoo-cephaly: Globe Trotting Awareness Animals partnered with Global Hydranencephaly Foundation to bring to you our very own traveling Bennett Buzz-bee (our logo bee and representative of all our little "bees"). 


From the founder of the zoo-cephaly, which was started in February 2012, Heather Tuttle-Sklar: 


"The main reason for this page is my daughter, Ella Hope. She has Microcephaly. She had an extremely rough start to life, but is doing fairly well. She has taught me so much about life. She has inspired me to reach out to other families who have Microcephaly with cute and cuddly outreach monkeys. 

We started out with Molly and Milly the Microcephaly MONKEY twins. With visits to many homes Molly and Milly continue to spread joy and awareness. 

Joining them is Leo the Lissencephaly ("smooth brain") LION. 

As well as Bennett Buzz-Bee the Hydranencephaly (missing brain parts that are instead filled with brain fluid) Bee. 

Also, joining the travels is Sunny the Shizencephaly (abnormal slits in the brain) BEAR."

Bennett has just begun his travels with his first stop in Texas with the Mason girls, Chrissy & Sophie.  
Photo: Chrissy and Bennett Buzz-Bee the Hydranencephaly Bee having some cuddles and happy moments in Texas!Photo: Chrissy's sissy, Sophie loves Bennett, too! Oooooo....<3

Bennett enjoyed some good great country music, rodeo parades on tv, and tons of Texas sunshine in February! Chrissy (left) was all smiles while Sophie (right) soaked up some cuddle time. Bennett even collected a rodeo momento in his souvenir bag before traveling to Washington...


more to come on his trip to Brayden's family in Washington soon! If you would like for Bennett to travel to your house and spend some time with your little bee (angel bee families included), contact me at President@HydranencephalyFoundation.org or email Heather directly through her Facebook page: https://www.facebook.com/pages/Molly-and-Millys-ZooCephaly-Globe-Trotting-Awareness-Animals

Saturday, March 23, 2013

BUZZ: Happy 4th Birthday!

25 Ways to Fill a Bee-utiful Easter Basket

Our little bees have their own way of doing things, and celebrating holidays is no exception! With easter approaching, and some families even participating in egg hunts this weekend as well, I thought I would help with some ideas that are ideal for our little ones who need a little extra attention.

Here find 25 inexpensive ideas for filling your child's easter baskets, without candy. Helpful  not only if they have hydranencephaly, but any neuro-related condition which limits their mobility or ability to interact with the world in the traditional way. 

Of course, the plastic eggs you can use to fill with some of the smaller items are perfect to utilize as rattles or to coat the outside with sensory fabrics. They're the perfect size to fit in to most little children's hands!

1. jingle bells from the craft section
2. pom poms, also from the craft section
3. squishee balls
4. small whistles
5. nail polish, for the bee-beauties
6. lip gloss, also for the bee-beauties
7. hair accessories, you get the point ;)
8. play dough
9. orbeez, great therapy tool! Check them out HERE
10. ear buds
11. cute socks
12. bubbles, an absolute must!
13. finger paints
14. electric toothbrush, not only great for hygiene but oral stimulation therapy as well!
15. flower planting kit, another great sensory tool.. playing in the dirt with mom & dad!
16. bunny fur... i.e. cotton balls, more craft items for sensory play!
17. mini lights, especially the great spinners they sell around the holidays
18. easter-themed DVD, a few ideas from my own shelf:
             It's the Easter Beagle, Charlie Brown
             Hop
             Winnie the Pooh, Springtime with Roo
             Here Comes Peter Cottontail
19. Easter or Spring-time related books (I would often make regular cardboard kids books in to sensory books by glueing in different textures and colors to the pictures, things like sandpaper, feathers, cottonballs, fabric scraps, foil, tissue paper, faux fur, felt... much more inexpensive than buying sensory books and you can replace it if it wears thin!)
20. maracas & rattles 
21. rainsticks
22. cheesy wind-up easter toys... especially the ones that hop, hop, hop!
23. new tube buttons for those tubie loves
24. fake grass, annoying when it's found throughout your house for months... but great sensory play item!
25. one chocolate bunny ;) Your child can have a wee little taste, and the rest is for mommy or daddy!

Let me know what items you come up with!

Friday, March 22, 2013

Flashback Friday: The Beginning


Flashing back to our very first blog post here on what is my second blog ;0) For the record, my first blog has now been deleted and most posts have been transferred here. We've come a long way in what will be TWO years in June!

Welcome to the cause, one that has been many months in the works to come even this far. My goal is to have legal non-profit organization status by my son Brayden's birthday on June 30th. This begins the journey to make that goal grow.

My son, Brayden Alexander, is the inspiration for this endeavor. On July 1, 2008, the morning after his birth with hydrocephalus, we were given a very grim prognosis. One that carried with it an expiration date of no longer than a year, but closer to a few weeks. In a foggy moment, we were introduced to the diagnosis of hydranencephaly.

Hydranencephaly is a rare neurological condition that occurs in less than 1 in 100,000 births across the globe. There is no known cause. There is no cure. There is no treatment. Brayden essentially is missing a majority of his cerebral cortex, we were delivered this news with the words, "he is missing most of his brain, surviving solely on his brain stem." Furthermore, we were told he would never survive, that if he did he would be in a vegetative state. He would never eat, nor see, nor hear, and he certainly would never recognize any of this loved ones. Any movements he made were said to be refluxes, that they would go away and his body would slowly shut down. He would need a feeding tube, eventually a ventilator, and would suffer violent seizures for the rest of his days.

Brayden will be 3 years old when his birthday arrives. He does not have a feeding tube, he loves to eat everything else we give him as long as it isn't a green bean. He is not on a ventilator, nor has he ever been. Seizures, they're new to him, but they're far from violent and well managed with anti-seizure medications. Aside from the placement of a shunt to drain excess fluid from his head, decreasing the uncomfortable size it had grown to prior to birth, he has been the epitome of health. He gets colds, every kid does, and they're scary since a cold could wreak havoc on his little body... but he's a fighter and we have always believed in him. 

That optimism and ability to believe in him did not come easily. It came from unwaivering support from across the globe. Had I, as his mother, never networked with other families facing this diagnosis, Brayden would not be here. He would not be the smiling, happy, chuckling little boy in the adorable blue glasses that everyone has come to love. He would not be the inspiration to everyone who knows his story. I owe his life to that support.

Support doesn't come easy to every family facing this diagnosis. Being handed a print-out about this diagnosis in the hospital upon birth, in the event that the doctors have not convinced the parents to terminate the pregnancy upon early detection, is the scariest moment in any parent's life. Being sent home on hospice, if the parent has the strength to take their child home at all, is like falling in to a black hole of doom. Listening to the long list of things your child will not do, like live, does not exactly put a glimmer of hope in your days. Wondering if every breath will be the last is no less than excruciating.

Fortunately, it doesn't have to be that way. It shouldn't be that way. In an effort to shine a light on this diagnosis, to show the amazing life that these children are capable of having, this foundation is being created. Providing the support to families to get access to the resources they need, the equipment they should have, and the knowledge they need as ammunition against a pessimistic medical community is the ultimate goal. 

There is hope, I believe that without a shadow of a doubt. Education will help change those misconceptions that poison the minds of those carers we rely on as parents to help us help our children. Sharing our children's lives with as many as we're able, that will help instill a more positive outlook on their little lives. Every one of these children have a smile that could light the darkest of nights. They have their limits, they require extra care... but by no means are any of the children suffering with nor dying of this condition. They are living, and in doing so they are teaching others how they should live as well.

Brayden's First Day at Preschool
February 15, 2011


Please share this journey with others and support our cause. There are many wonderful goals for this foundation, I assure it will continue to grow and flourish and help many families along the way. I have spent my days since Brayden joined our lives doing extensive research which is chronicled in my blog Small Portion of a Life's Journey. In taking that research a step further, while paying it forward the support I was fortunate enough to have in the earliest days and every day since, this foundation will be the stepping stone to changing the lives of these little miracles...and the families who are blessed by them.


Thursday, March 21, 2013

Bee-Inspired

We love to bring stories of inspiration.. and this is full of them! You'll have to visit our friends at the Friendship Circle blog to catch more great stories (I get their posts via email, so I never miss a post!) To top all of this awesome-ness off, we all love music... our little bees especially! Let us know who your favorites are!

5 Amazing Bands Who Look Beyond Their Disabilities


5 Bands Looking Past DisabilitiesOne man’s disability is another man’s superpower! Everyone has a talent and that is certainly the case with people who have a disability. If you don’t beleive it you may want to check out these five amazing bands who not only play wonderful music but also spread the message of music inclusion.

1. Rudely Interrupted

Rudely Interrupted
Formed in 2006 by Rohan Brooks, Rudely Interrupted is one of Australia’s truly unique independent rock acts. Based in Melbourne, Australia, Rudely Interrupted is a famous band in Australia and has toured the world including a stop in the United Nations. Rudely Interrupted strives to challenge people’s thoughts on disability”
Five out of six of Rudely Interrupted’s members have a physical or cognitive impairment. Lead singer Rory Burnside is blind and has Asperger’s syndrome (but also has perfect pitch—one man’s disability is another man’s superpower, you might say); keyboardist Marcus Stone has Asperger’s and is 80% deaf; bassist Sam Beke has Down syndrome; drummer Josh Hogan has autism; and percussionist Connie Kirkpatrick has Down syndrome and is legally blind. The only neurotypical member of the group is guitarist Rohan Brooks, a music therapist who came up with the idea of forming a band made up of some of his students.

2. The British Paraorchestra

British Paraorchestra
The British Paraorchestra, based in London, is an orchestra consisting entirely ofmusicians with disabilities—the first ever orchestra of its kind in the United Kingdom.The Paraorchestra was formed by conductor Charles Hazlewood in 2011 as a project to create a platform for the top disabled musicians, with the hope that its success would lead to better integration of the disabled into music and performing arts. The orchestra received international attention when it played alongside Coldplay during the closing ceremony of the 2012 Summer Paralympics in London in September 2012.

3. Flame The Band

Flame The Band
Flame, is a group of talented musicians from upstate New York who happen to have disabilities. Flame averages 70 paid performances per year, including concerts in 16 different states, and Europe.  The band performs for national and statewide conventions, corporate conferences, civic events, schools, dances and private parties.  Flame’s song list contains over 100 classic hits – rock, country, and blues – from the past five decades.
Band members have disabilities that include blindness, autism, cerebral palsy and down syndrome. The band has looked way past their disabilities and bring Flame’s music and message to the rest of the world to help change how the public perceives people with disabilities and increase the awareness and acceptance of all people.

4. Heavy Load

Heavy Load
Heavy Load is a punk band based in Brighton in the U.K. The band is made up of five musicians, one of whom has Down Syndrome and two who have learning disabilities. The band is currently promoting a campaign called, “Stay Up Late.”  Currently hired care givers finish  their shifts at 10pm causing individuals with learning disabilities and other special needs to leave gigs and other events early. Stay Up Late aims to find ways for individuals with special needs to stay up and out later than 10pm.

5.InterPLAY Band

Interplay BAND
interPLAYcompany is a 67 piece orchestra of adults with cognitive disabilities, playing all genres of music with senior high school , college  and professional musicians and guest artists. The band includes a group of dedicated bandaides, musicians, professional performers, and behind the scenes skilled staff for concerts and  rehearsals.
Band members play professional percussion and traditional instruments from all over the world. Band members also perform vocals.The band plays a wide repertoire of music including classical, jazz, Broadway, folk, light and grand opera, vocal and drumming.


About Tzvi
TzviTzvi Schectman is the Family Coordinator for the Friendship Circle of Michigan and the Editor of the the Friendship Circle Blog. You can connect with Tzvi on LinkedIn and Google+

Monday, March 18, 2013

Meet the Bees Monday!

Phillip’s Story as told by mum, Avril:


I could talk about Philip all day, but find it hard to write. Philip was born on the 10 August 1994 he was diagnosed at 20 wks gestation as having no brain. When born we were told all was well, his head was correct size, (I had a son who had microcephaly, so his head was small) and they thought if Philip had no brain his head would be large as it would be full of fluid. They said his movements, colour, etc was well and he could go to the ward with us. Because they were so certain during my scans, I insisted they scan him before we rang our family, so they took him for a scan and half an hour after his birth they told us to have him baptized immediately as he would not live very long, he only had a brain stem, and this could only sustain life for 2 days to 2 weeks maximum.


So I am very thankful that we celebrated his 18th birthday last August, Philip is a very happy boy, even though he has horrible seizures every day, and has bowel problems. He loves music, especially classical music and laughs when he hears the violin, he also laughs when I sing to him, but then again everyone laughs when I sing!!!!

He giggles when babies cry! So noise is important to him. He had a shunt fitted when he was 13 wks old, not because his head had started growing, but they said it would and it would be better for Philip if the shunt was placed while he was well. He loves the bath and some years ago Santa brought him a spa bath which he really loves and relaxes when he is in it. He follows us as we move around if we are reasonably close to him, and looks out for us when he hears our voice

Philip does not go to school, this is my choice as I worry about him picking up germs, so he spends his day at home with us. He loves toys that light up and make noise, and he enjoys watching optic fiber lights change colour.


Something that has just come to mind, things Philip loves most, his mum and dad, in that order (don’t tell Dad lol) and whispering in his ear, and Daddy whistling! Things Philip hates the most, getting his teeth cleaned, his face washed, his medicines, and sitting on his own bottom, in no particular order.

Saturday, March 16, 2013

Shareworthy Saturday


I don't necessarily agree with every statement here... but a little humor never hurt and this pretty much nails most circumstances on the head. My fav:

Fulfillment: What you now have in place of fun. Not a bad trade, all things considered, because fun lasts a moment and has to be repeated over and over again whereas the fulfillment you get from loving a severely disabled child lasts for eternity.

Child Disability Terminology Primer-for those without a disabled child who don't have a clue what we're talking about
By Roy L. Ellis

ADA (Americans with Disabilities Act): This is what those morons do who illegally park in handicap parking spaces.

AFOs (ankle-foot orthotics): Lesser known martial arts weapon designed to inflict maximum body damage on the parent or caregiver of a disabled child when they're spasming and kicking the #$%^ out of you.

CP: Some say this stands for Cerebral Palsy. It's pronounced See-Pee on account of that's what the parent does for the rest of their life, well that and the chunky brown stuff too.

CVI (cortical visual impairment): Loss of vision caused when the eyes work OK but the brain doesn't. Most commonly seen in parents of children with brain injuries when the parent leans over to kiss a child in a wheelchair thereby triggering the child's startle reflex resulting in parent's eye being gouged.

DAFOs: Slightly more Deadly version of the aforementioned AFOs.

EI (Early Intervention): Government program designed to keep parents from strangling the so-called experts who think they know more about their child than they do.

FAPE (Free and Appropriate Public Eduction): This is what happens to special needs children at school. They get Faped by the other kids who think it's fun to bully them. Of course, the teachers do nothing to protect your special needs child and sometimes even engage in a little faping themselves because, after all, FAPE is mandated by the government. The best thing about getting Faped, of course, is it's free.

Friends: Something you used to have.

Fundoplication (or Fundo or Nissen): Revenge of the GERDs. A surgical procedure designed to prevent the child from barfing all the time. It comes from the Latin phrase for Funds Depletion.

GERD (GastroEsophageal Reflux Disease): For the rest of us it's called heartburn but, for the disabled child, they give it a bigger, fancier name so they can charge the parents hundreds of dollars a month for what the rest of us pay $10.

Head of Household: Your new income tax filing status after your spouse bailed because he/she “didn't sign on for this”.

HBOT (HyperBaric Oxygen Therapy): One of the more creative ways of putting additional pressure on families with a severely disabled child. The theory is that if they squeeze you enough they can get more money from you.

HIE (Hypoxic-Ischemic Encephalopathy): Technical term for brain damage due to lack of blood and oxygen. It's what happens when your doctor screws up while your baby is being born. It comes from the Latin phrase, Not My Fault. One of the many causes of cerebral palsy.

IEP (Ignored, I mean Individualized, Education Plan): This is a document that supposedly describes what your special needs child will be doing in school all day. A group of experts employed by the school district comes together once a year to make guesses as to what your disabled child will be doing a year from now. They then list highly specific and individualized therapies and procedures to assure the child actually achieves that and put them into a document that suspiciously ends up looking exactly the same as everyone else's IEP. They then mail copies of the document to everyone who promptly ignore them.

IFSP (Individualized Family Service Plan): This is the baby brother to the IEP. It takes a lot of practice to foul up an IEP in exactly the right way so, prior to your child being old enough for school, they get to practice for 5 years while your child is still a preschooler.

Insurance: Your new full time hobby after your company realizes your child is a million dollar baby and takes advantage of every loop hole.

I Love You: Something other parents get to hear from their child.

Legally Blind: A condition that causes stupid adults to approach a disabled child's parent and say, “I don't know if you know this but did you know your child can see?”

Mic-key: A plastic, button looking, thing that is inserted in a hole in the child's stomach wall. It is designed to do 4 things. 1) Connect a feeding tube to the child. 2) Give the child something to yank on so, once pulled out, they can spray stomach contents on everyone and everything. 3) Trick the parent or caregiver into thinking the feeding tube is firmly attached thereby assuring maximum spilling of sticky pediatric formula. 4) Allow the child to make cool fart noises through their belly button.

NickJr: The only TV station you get to watch for the next 20 years.

NICU (Neonatal Intensive Care Unit): Pronounced Nick-You on account of that's what they do to your pocket book.

NPO (Nothing By Mouth): OK, so it's the Latin equivalent of nothing by mouth but, if they just said nothing by mouth they couldn't charge you as much.

PT, OT, and all the other ___Ts. A form of therapy designed to leave your pocket book empT.

Quad: Short for quadriplegic. This doesn't mean the person is paralyzed in all four limbs. It can also mean the child kicks and punches the #$%^ out of you when you try to get them dressed because they can't control their spasms.

R-word: This is something, that if you say it, some parent is going to bitch slap you. For the uninformed, we don't say retarded anymore because of its association with that most awful of insults, calling someone a “retard”. We now say intellectual disability or cognitively impaired.

Ramp: Something you put in the front of your home to alert your homeowner's association to watch you extra closely for creative ways to fine you. Also used to alert criminals that your home is an easy mark.

SBS (Shaken Baby Syndrome): An argument in support of capital punishment.

Seizure: This is what they do to your home and personal property when you can't pay your child's million dollar medical bill.

Sleep: Something you don't have anymore.

Spastic: One of the positions parents assume when they get their child's latest medical bill or denial in the mail every day.

SSI: A religious cult that believes someone with a higher cost of living due to a disability can live on $700 a month.

Toothbrush: A device designed to make tube fed children vomit immediately prior to their school bus arriving thereby assuring the child always wears a clean set of clothes to school.

Trach: Similar to the aforementioned Mic-key but it's used to connect a breathing tube/ventilator rather than a feeding tube. It comes with the added benefit of depriving the parent of sleep because you have to suction slime from your child's airway every few minutes 24 hours a day so they don't choke to death.

Vent: This is what the irate parent does when the stupid caregiver doesn't know how to operate the child's ventilator and is too proud to admit it.

Wheelchair: 1) A device designed to instantly widen doorways and to give your home a custom “lowrider” wainscoted look, that fashionable ring throughout your entire home approximately 12 to 18 inches above the floor. 2) A device designed to double your car payments.

Fulfillment: What you now have in place of fun. Not a bad trade, all things considered, because fun lasts a moment and has to be repeated over and over again whereas the fulfillment you get from loving a severely disabled child lasts for eternity.


                                                     http://www.fatherof11.com

Thursday, March 14, 2013

Thankful Thursday: Family


You know the saying, something along the lines of:

"Family is not always blood. Family is not always those people in your life who you have known the longest. Sometimes it is those people who stick by you and support you, through the ups and downs, and never let you go far from their heart."

Ok, I embellished that to my own liking... but you get the drift and I'm sure you've heard variations of the sentiment yourself.

I've said it several times here, I'll say it again this Thankful Thursday. I have immense amounts of gratitude for my hydran-family, our network of families who come together from afar in an online support group on Facebook. Some of those families have met others, I've met a a few. MOST of those families have never met another family there. 

Yet, those families hold each and every one of the other families close in their hearts at all times. I know for myself, I think about the ill children constantly, those who have grown their angel wings forever hold a place in my heart, and those who accomplish great things... I celebrate for them in a big way, just as if it were my own child! My daughters know nearly every child by name when they see their pictures. These families are a part of my life, my heart.
While the circumstances that brought us all together are far less than ideal, I feel that we all agree that we could not have found a greater bunch of parents to share in this journey with. 

That said, our support network is in the running for an amazing honor. Readers Choice for Favorite Special Needs Support Group Online. Just to be nominated is an amazing opportunity, but we sure would love to hold this award wholeheartedly and celebrate the amazing support environment our families have created. 

Help us by voting daily until March 19th HERE. It literally only takes seconds... and we would be ever so grateful for your time!

Tuesday, March 12, 2013

Toy-FULL Tuesday: YOU!

Don't forget, it's Brain Awareness Week and we just so happen to be brain aware every week! Check out our Facebook page and Twitter for fascinating brain aware facts all week long!


On Tuesdays we feature great products, equipments, and therapies that have been recommended or tried by our little ones with extra special "powers"... the market is chocked full of the latest and greatest in toys. Coinciding with brain awareness week, I'll be sharing what I believe to be the best toy for boosting the brain development. 

Yes, our kids with hydranencephaly are missing their cerebral cortex. Yes, doctors imply that they will be living in a persistent vegetative state. Yes, those factors should mean that toys are not a part of our kids' developmental play. 

None of that is true. Our  kids make their own rules, remember? And part of that means that they LOVE to play with toys!

Fact is, you can buy all the toys on the planet... lights, sounds, sensory stimulation, or even robotic arms that interact with your child's movements or sounds. The best toy for boosting brain development is (drum roll please.....)


Yes, that's YOU! 

And, while the human brain continues to develop those 100 billion neurons for the first 25 years of life; the very first 5 years are crucial in building pathways for development... even in our kids with hydranencephaly!

Parents oftentimes feel that having technology to stimulate their children is the fast track to success in development... think iPads, television, and smart phone games. While it helps, personal interactions with your child has been proven to be the best. 

"Good old fashioned parent to baby contact is the number one developmental factor for the developing brain." 
~Nina Sazer O'Donnell, director of National Strategies for Success By 6, a United Way of America learning initiative.

Some great ideas for your special needs child are:

~reading with, not just to, using tactile books that your child can feel and see. I made my own with fabric scraps, sandpaper, foil, feathers, and other scraps with texture and a lot of glue!
~infant massage; pair it with a song and they'll learn to associate the experience with the song and anticipate what will happen when they hear it. My personal expertise is with the "Loving Touch" method so feel free to contact me for details on that if you're interested!
~children's yoga, a great resource is "Yoga for the Special Child" by Sonia SumarIt's actually sold out on Amazon, I believe the book is no longer manufactured, so if you're interested in obtaining a copy... let me know and I'll happily shoot it to ya in exchange for a simple gathering of more followers for the blog ;)
~any general play therapy, even crafts, that you are doing with your child using a hand-over-hand technique to engage your child. Sensory tubs are a huge fav of mine.

Toys are great, don't get me wrong... I'm by no means discouraging them! I always advise that your child have the following:

"something to look at, something to hold on to or touch, and something to listen to"

So, to help with the navigation of toy products and advertising ploys, check this out from Bright Tots:


Choosing the right toy for a special needs child can be difficult; parents sometimes need extra help narrowing down a toy. Special needs children have the same basic needs as other typical children. They are curious about their world. A special needs child may require extra support based on their individual needs, but should not be treated as if they are different. However, selecting a toy for any child begins with two steps: first, learning what the child is interested in, and second, assessing his or her skill level. Choose a toy that is age appropriate and will inspire the child’s interest, creativity and exploration.

Special needs children should be given toys in which they are capable of achievement. They want to learn; and enjoy activities such as going to the park, picture books, toys, and games. These children need to experience success and learn how to deal with failures. Helping a child experience success through play has a significant influence on brain development. In fact, researchers have found a direct link between brain function and the rising stress level caused by a losing during play and other activities. Toys that are appropriate to a child's developmental stage and abilities help assure repeated successes, building brain function as well as self-esteem.

Educational toys for children with special needs enhances a child's skills in sensory, motor, and cognitive development. All special needs children can benefit greatly from toys for their therapeutic, educational, and entertainment values. Toys for special needs children should be action-oriented, attracting the child to center their attention on it.

Special Needs Children and Play

For children with special needs, play is often not self-initiated. They need demonstration and encouragement, and some children may have trouble choosing one toy from numerous. Children with cognitive problems do not have the same plan of action that typically developing children do, so organizing themselves and their activities is more difficult.

When teaching special needs children how to play, one must not cross the fine line between demonstrating and dominating the play. Adults provide the environment and the tools, but only the child can match the play to his/her skills and interests. Too much adult interaction, particularly when the adult's idea of the desired outcome of that play is pressured on the child, it causes stress levels to rise. Likewise, independent play can relieve anxiety and stress. So even if adults have a specific result in mind for each toy, such as fitting a small cup into a larger one, that should not be the sole purpose of success in playing with that toy. Play should focus on the process instead of the results. The joy of play has to be the exploration for special needs children.

Children with special needs include children of all abilities, cultures, races, and backgrounds. Like all children, they have individual interests, likes, and dislikes. Some children with special needs have physical disabilities, speech or other developmental delays, or difficulty interacting with other children or adults. The disability may be mild to moderate to severe in range. Whatever the range, children with disabilities are more like other children than they are different; as they play, make friends, feel happy or sad.

Physical Disabilities

It's important for children with disabilities to frequently play, because physical disabilities can have a major impact on the motor systems of an infant or toddler, limiting a child's ability to reach, sit, stand, or even move at all. When toy shopping for a child with a physical disability, make sure the product is simple to use and provides a clear cause-effect relationship that the child can see. It should have large buttons or other easy-to-use parts.

Hearing Impaired

Depending on whether they are totally deaf or hard of hearing, children with hearing impairments must be challenged to absorb environmental information to fully enjoy their toys. So in picking toys for these children, make sure the volume can be amplified if it's a product with a voice or generates noise. Both bright colors and
lights increase sight and other sensory stimulation. Textured toys are great for children with hearing loss because the feel of the toy can heighten their appreciation.

Visual Impaired

Children with visual impairments enjoy toys that are simple to operate, produce familiar sounds, and have large, raised parts or other tactile textures and shapes. Also great: toys that give off distinctive scents or provide auditory directions, vibrations, and noises. Bright, bold colors are important for children who are partially
sighted. Visually impaired children enjoy playing cards with large numbers and letters.

Speech and Language Delays

Children with speech and language delays enjoy playing simple games such as itsy-bitsy-spider, peek-a-boo and patty-cake. Read books appropriate to the child’s age and interests out loud. Sing to the child and provide him/her with music. Learning new songs helps children learn new words, and use memory skills, listening skills, and expression of ideas with words. Blowing bubbles can develop oral muscles, and toy telephones and pretend play encourage talking. Play with your child one-on-one, and talk about the toys and games while you are playing.

Mentally Challenged

Mentally challenged children often enjoy activities involving sorting, counting, identifying, and planning. So toys that challenge them to engage and think are ideal. Some toys to consider for cognitively challenged children are clay and Play Dough, bubbles (to improve a child's visual pathway), finger-painting supplies, jumping games, ball games, cards, and play-fishing games.

When buying special needs toys

For children with special needs choose toys with care. Keep in mind the child’s age, interests and skill level. Look for quality design and construction in all toys for all ages. Make sure that all directions or instructions are clear—to you and, when appropriate, to the child. Plastic wrappings on toys should be discarded before they become dangerous playthings.

Toys for Children with Special Needs
When selecting a toy for a special needs child look for and regard age recommendations, such as “Not recommended for children under three.” Look for other safety labels including: “Flame resistant” on fabric products and “Washable/hygienic materials” on stuffed toys and dolls.

Sunday, March 10, 2013

The Amazing Brain: Awareness Week



Tomorrow starts one of my most favorite weeks of awareness: Brain Awareness Week sponsored by the Dana Foundation, which runs from March 11-17 this year.


Mission
WHY DID BAW START?: DABI organized the first BAW in 1996 to unite diverse groups from academia, government, and professional and advocacy organizations with the common theme that brain research is the hope for treatments, preventions, and possible cures for brain diseases and disorders. This initial effort involved 160 organizations in the U.S. 

In 1998, the campaign was introduced globally, first as a day and then as a week-long celebration. Today, BAW participation spans six continents, and the campaign continues to grow in both the number of partners and the number of activities scheduled. The 2011 campaign was marked by more than 750 activities in 52 countries and 37 U.S. states.

WHY PARTICIPATE: BAW provides a wonderful opportunity to place your organization’s work in the public spotlight. By celebrating BAW, you can:
• Increase your visibility by advancing your mission within the broader context of a global education initiative.
• Spread the word about the importance of brain research and its critical role in helping people lead healthier and more productive lives. 
• Arm the public with the knowledge and information they need to make informed decisions about their health. 
• Insure a future for neuroscientific discovery by inspiring the next generation of scientists.


For those that don't know me personally, I am utterly amazed by all things neuroscience... just call me part-time neuro-pro! There is so much we do not know about the brain and it's functioning, despite what medical "professionals" claim. Topics such as neuroplasticity, stem cell advancements in scaffolding, neurogenerative advancements, and basically all things brain will keep me interested for hours.... and our kids with hydranencephaly are "said" to be living without a brain, but truth be told they DO have some components of the brain: hypothalamus, brain stem, thyroid, pituitary glands, cortical mantle, and the list of preserved parts in hydranencephaly goes on and on to include parts that are next to impossible to pronounce!

So, all this week is dedicate to the wide and wondrous brain.... join us here on our blog & at our Facebook page for more fascinating facts!

Tuesday, March 5, 2013

Toy-FULL Tuesday: Medical IDs



When you are in an advocacy role, you quickly realize that there are awareness days/weeks for every health topic... except our own. We are striving for that as a goal for 2013 and hope to achieve it sooner rather than later.

This week happens to be Patient Safety Awareness Week, which I have to say I find incredibly ironic. 

I find it ironic that there are various days and weeks of recognition of patient safety and human rights and promoting life... however, our families continue to fight for the lives of their childIren. Why does it seem that children with hydranencephaly are not eligible for these rights, simply because they are granted a gray cloud upon diagnosis that makes their life less than perfect in the eyes of some. 

Medical professionals continue to believe that a terminal prognosis means there is no reason to provide that individual with the best quality of life possible. All of us at Global Hydranencephaly Foundation will continue to fight for that enlightenment wihtin the medical community. 

What does this have to do with patient safety awareness week or our weekly Toy-FULL Tuesday series? 

Parents must ensure patient safety of their children and not rely solely on those trained "professionals" to ensure safety alone. *sorry for the seemingly aggresive start to this post, some topics just really get me worked up more than others!

A great way to help is with medical id jewelry (bracelets, necklaces, belts, etc), available from a variety of medical supply companies and even customizable by small boutiques (of course we encourage you to find a small boutique to make any purchase = support small business!)

Here are a few places to check out, especially for kids (photos shown are only a sampling of products available by clicking on the website links):

Sticky Jewelry 
Medical Bead Bracelets for Kids

  Kids Rubber Medical BraceletsMedical Alert Necklaces for Children
Lauren's Hope: The Original Medical ID that combines Safety with Style

Tropics Stainless Steel Medical ID CuffDiabetes/Insulin Pump Brown Silicone Medical BandsColor Changing Mood Beads Medical ID BraceletRobin's Egg Medical ID BraceletLovely Medical ID BraceletBlonde Princess Medical ID Necklacecute medical id bracelet

Petite Baubles Boutique

Medical ID dogtags, dog tag custom engravedMedical ID beaded bracelets for girls
Medical ID alert bracelets for boysCustom engraved medical ID tags and sliders hypoallergenic
MedicAlert Foundation "More than a medical ID – MedicAlert® is your emergency support network.Our services ensure emergency responders and hospital staff get your up-to-date medical information, the moment they need it, to make informed decisions about your treatment and care.With MedicAlert Foundation, you can be confident knowing that your medical ID connects you to the most dependable emergency support network -- because every moment matters."

Fun colourful, waterproof id bracelets by www.vitalid.ca - Great for family Vacations

And there are so many more resources to be found... these are just a few I bookmarked. AND, I've contacted a few companies in  hopes of having a hydranencephaly awareness "Believe in the Impossible" ID bracelet made for our own little bees to wear (stay tuned for more on that!)