P-R-E-V-E-N-T-I-O-N

Hans (diagnosed with Autism Spectrum Disorder holding 

Ethan my son who is deaf-blind)

I am not a fan of "protection" police.  I often get flack from my friends because I am not a believer in laws that are for prevention.  I hate helmet laws, I think the seatbelt law is a total joke.  I advocate for parents rights to chose the way the raise their children.  While I don't support child abuse, I think that if a parent wants to smack their children's bottoms, they should be allowed to do so. 

There are however, protection issues that I can and do lend my support too.  Real protection.

Most of my readers have typical families.  With typically developing children.  I believe that even those who have friends who have children with special needs, really don't understand the depth of the struggle that some families face.  This of course isn't a fault in them.  It's much like families who don't have a son that plays football.  It might be hard for others to understand the sacrifice that those boys make.  They don't know the schedule or when the games are.  It's really no different than that, ultimately.

All that being said, there are some really interesting statistics, and facts that I think would be really good for all of us to be aware of.  Information that in a case of emergency could have a profound effect in our communities, and especially the families who have members with special needs.

I live in small community.  Actually, it is not even a town. I live in an unincorporated part of the county.  We have a fire department and first responder team that volunteer their time to help in times of need.  They are located right with-in the center of our town.  Night and day they respond to calls, running to the scene of all manner of incidents.  House fires, car wrecks, farm accidents, everything.   I've written before about how the willingness of these volunteers is astounding to me.  They train, train and train again in order to hone their talents so they can protect our community to the best of their abilities.

I am wondering however if there is something we can do as a population to help these hard working men and women serve our community armed with more information that could possibly lead to better outcomes.


I've recently come across this story about a boy named Mason Allen Medlam.  If you have a moment you really should click on the link and read in depth his story.  It is heartbreaking and gut wrenching.  I promise if you read it, you'll never be the same.  His parents have become pro active in trying to get legislation in order to facilitate information sharing about households with special needs.  There is a link on their website that allows someone to electronically sign a petition to help this process along.


The information they are trying to get out there, are special instructions or information regarding a special needs child, and how to let those civil workers best approach these unique children.  As well as provide individualized traits and abilities the children might have.  A registry of sorts, so that police, fire fighters, searchers might be able to be more effective if armed with some individualized information.

In the state that I live in, you can already do this.  If you have information regarding special circumstances in your household you can dial 211, on your phone and discuss them with an operator.  You can add your cell phone numbers to your land  line information so that if 911 is dialed they have pertinent information  regarding your family already on hand.  This is linked with your physical address as well.  I have no idea how this is working.  If it has been successful. I have tried to find evidence based data and evaluated outcomes with this program and I have been unable to do so.  I also am not positive how many families know about this service or have utilized it.  In these days of HIPPA and privacy laws I am not sure how well this information is accessed or shared.  I do think the idea, is fantastic though and has great potential.

Hans, Victoria, Jay and baby Ethan

There are such challenges, and just like every typical child is unique and has different quirks and individual tendencies, so do special needs children.  I would say that especially children with social/emotional diagnosis, while they have similar challenges they respond differently, which potentially can have a huge effect on how they will react in crisis situations.

Parents also at times have an overwhelmingly difficult time defining or explaining why their children behave in certain ways.  It's frustrating for us when it seems like others do not understand, or in some cases don't "seem" to want too.  We tend to feel guilty or responsible.  We feel scrutinized.  We hear, "If only they would medicate him", or "Why doesn't he just discipline her?",  or, "If my child acted like that, I would come unglued".  These comments increase our guilt.  They make us feel misunderstood, judged and compound our feelings of insecurity and uncertainty.

I'm sure this is not the intent of our friends and family, or those in our community. Its mostly, just miss communication.  Or lack completely of communication.

Since this blog is an avenue of awareness, I want this to be a safe place, where we can just put it out there and discuss everything openly without judgments and heartache.

So bear with me, while I delve into a few things that I think we should all be aware of.

Children who have have social emotional challenges, which include diagnoses on the Autisim Spectrum, Angelman Syndrome, Down's Syndrome as well as kids with Developmental Delays, bi-polar and ADHD or even ADD

Some common tendancies are:

• A facination with water.  Taps, hoses, lakes, ponds, canals-- anything to do with water
• Over-sensitivity or under-sensitivity to noises
• Inappropriate toy play
• Difficulty dealing with changes in routine 
• Inappropriate laughter or crying
• Lack of awareness of danger
• Hyperactivity or passiveness
• Oversensitivity or undersensitivity to touch 
• Strange attachments to objects
• Lack of eye contact
• They like to run away or hide
• They have no fear

This list of things is just a jumping off point. Some children are highly effected by these ailments.  Others, not so much.

The one think I would like to express the very most, is that for these kids most of what effects them are NOT a choice.  They don't choose to be able to hyper focus, they don't choose to be sensitive to touch, they don't choose to have these issues effect them.  There are avenues to help them learn coping skills, there are methods that are being used to help kids (and adults)  effectively facilitate management of these symptoms. It's not a lack of parenting, it isn't that these kids are bad, it is that they are truly effected with a physical (brain) ailment and way it comes to the surface or manifests are very visible and often just appear to be unruly, or misbehaving children.

So where does this leave us? Probably with more questions than answers.  Should there be a registry where parents who want to, can add their household to a list so that when authorities are called, those that are involved have access to special information regarding the special needs person involved?  Should we impress upon our leaders that we want CERT (Community Emergency Response Teams) Teams in our communities? Is this enough?

News reports and media stories are filled with searches and alerts for missing kids with disabilities or aging adults who have wandered away from their families. Hopefully there are good positive outcomes.  Sometimes, they are not.  In the case of Mason Medlem, the outcome was devastating.   We parents and caregivers do the very best we can to prevent anything from happening to our children.  Sometimes, no matter what we do, there are incidents.

Lets join together, put our thinking caps on, and come up with suitable ideas that will help our special needs families, the officers and public volunteers that serve them, and our communities, by being aware, informed and perhaps a little more softer hearted towards those who have special needs children in their lives.

LOOK at What is NEW!

I have been so excited about this little gem, but I have been waiting to share it with the world, until I got some good photographs!

Ethan has a really good friend, named Becca.  She well, quite frankly is a hottie.  He's had a crush on her for some time.  Well, last month her Mom who is really one of the most amazing people I know, launched a brand new site in which she is displaying all her talent !

I LOVE
Becca Bug Creations.

After Ethan and I took a good hard look at what was available we finally selected Ethan a new back pack or well in our world, a wheelchair bag.  This is EXQUISITE !  It is perfectly designed and has a unique flavor to it.  It's perfection.  It has these clips in which allows us to put the bag on the handle bars of Ethan's wheelchair. This prevents it from sliding all over the chair and falling off.  

It is PERFECT in size and has many pockets.  I love the pockets.  It's double stitched, excellent quality and very durable.  It does not hit the wires on his chair or get tangled up in his wheels.  It holds everything we need.  It will hold all five of Ethan's braces, four cans of formula, four toys a bottle, diapers and wipes!  PLUS, get this, my drink cup fits in the front pocket perfectly.  (I am sure it was designed for this!)

Thank you Queen Diana for your excellent craftsmanship, talent and creativity.  We are VERY pleased!!

So-- What do we say?

As I mentioned before one of the hardest things about day to day life with Ethan, are the stares and quick glances that we get when we are out in public.

My first experience with this, was just after we brought Ethan home.  I mean it, he looked really healthy and normal! Well, except that he was hooked up to three or four machines at a time.

My first trip to the grocery store seemed innocent enough.  I need a few things and the other kids were occupied.  So I packed up Ethan and his oxygen machine, his feeding pump and tubing and his oximeter and headed out into completely uncharted territory.  I made it to the store, filled the cart full of Ethan's equipment and rushed in. Determined I could do it.

I was in the frozen food isle, looking for ice cream or some other dangerously caloric product, when I noticed this young girl peeking around her mothers skirts. .She kept looking at Ethan with awe in her eyes.  She finally scampered over and much to her Mother's chagrin, she asked very reverently, "Does your baby plug in?"

I laughed and giggled and said, "Why yes he does!"  Her mother was horrified and apologized and whisked her away.  I told her not to fret, that asking was just fine, but the Mom didn't agree and off they went.

That seemed very cute to me.  Now days, taking Ethan into a store it feels like everyone gawks and stares.  A few people will you look you in the eye and smile.  These people seem to have some experience.  They know someone, or have spend time with kids (who will someday be adults) like Ethan.  Other folks completely avoid you.  Kids are always curious and they usually stare.  Sometimes their parents will say something. Most of the time they whisk them away.

 So what do you do? What do we say? How do we address the elephant in the room?  I can't speak for every Mom in my situation.  For me, I usually take the lead.  If a child in the store is staring, I will look them in the eye, smile and say Hello.  If then the parent hauls them off, that is the end of it. Often, I am left feeling really dumb, angry or speechless. (Hard to imagine, that)  When this happens, it is heartbreaking.  It hurts and I feel like an actual elephant, standing there.  It has brought tears to my eyes on more than one occasion.  Not that we all don't know I am a total wimp already.

I would suggest to all those wondering minds who are sitting on the edge of their seats waiting to hear what I have to say, that addressing the subject is always the best idea.

Say, "Tabatha my daughter is curious about your son, can she say hello?"  or, "We love your wheelchair", and then lean over to your child and say, "Some kids can not walk, so they have wheels."  I promise you, the mother in question will take it from there.  She will introduce her child and be grateful for the interaction.

For children with less noticeable disabilities, a child who is 12 but is crying in the isle at  the pharmacy with Mom, or a three year old who sits in the back of the cart with his head down, lightly banging it against the metal.  The same rule applies.  Look the parent in the eye, smile and say "We've had days like that too." or even just say "hello".  Don't just glance at them and walk away, or avoid making eye contact. Don't judge them.  Not the child or the parent.  When my older boys were little, I often heard, "If she would just discipline them." or my personal favorite, "If she would just medicate them"  Comments like these are so hard to bear. I wanted to scream, "I am trying!", "I am doing the best I can", or "If you think you can do better, you take them!"

I think it is the best to assume that parents are doing the best job they know how to do.  It is more than likely that we have no idea what goes on behind their doors.  Struggles with children who have social / emotional behavior issues are dang tough!!!  I sometimes think that I have it easy.  Ethan's disabilities are visible, easy to see.

Lets talk about language a little.  We've discussed use of the word retard.  We've talked about people first language which is my favorite.  Handicapped is the verbiage that is being used professionally.  "Handicapped parking" or in the Utah drivers handbook it uses that word.  Personally I have no issues with it.  Though, much like the word retard it has gained that connotation that is used flippantly and with out thought or care.  Special needs, is what the public school systems at least in Utah use.  I like Governor Huntsman's signs he had put up around the state that said, don't DIS- Ability signs.  Some folks use "Differently Abled"

We parents have such power to teach our children.  Love,compassion and understanding are taught at a parents knee.  I would encourage anyone to step outside of their comfort zone a little and be brave and bold. Ask questions, nod and smile. Say hello.  It's a very small world.  It's also a very good place to be.

Once again, I thank you for joining me on this walk.  I would encourage any comments or questions. This subject is totally open for discussion.  If you have a question, please ask.  Other Mom's who have children with any type of disability. Speak up. Lets hear from you.  How do you feel, what language do you prefer?

"The moment one gives close attention to anything, even a blade of grass, it becomes a mysterious, awesome, indescribably magnificent world in itself-- "Henry Miller

R-E-T-A-R-D

There are thousands of things that cross my mind every day, that I would like to write about.  Yet the days slip by  and I never get to them. I have notes strewn across my house on topics I would like to delve into.  Often, I have a very deep sense of how I feel about certain things. Other times I am not so sure and I am looking for other people to share with me their point of view.

I am asked on occasion by those who feel comfortable enough to do so,  which "word or phrase" do I prefer to have associated with Ethan.  Most everyone knows that the word "Retarded" to describe a youngster isn't the politically correct verbiage.  I think in all my parenting days with Eth the only one who has actually associated that word with him, was a professional doctor who was referring to the way she had filled out an evaluation form to prove  disability for an application for services.

I actually have no problem with the word.  My irritation comes with the connotation that is associated with it.  Don't even think for a second that I have not been guilty of this my entire life.  I spent half of Jr. High School walking around going "Duh", "Der". or hitting my hand on my chest and acting ridiculous.  My Mom, bless her heart never really corrected me on this horrible infraction.  I could also say my entire experience with the disability world could have been summed up by knowing a girl in our neighborhood, "Rosie" who had down syndrome.  Yes, that would be the complete summation. 

Over the course of the last seven years however I have had an entirely different set of spectacles in which to view this world with.  For the first year or two of Ethan's life he looked relatively normal. I carried him around in my arms, and unless you were really paying attention he seemed fine.  He glanced around the room with both eyes together, he giggled and laughed, cried. He seemed healthy. Gradually as his disabilities became more and more apparent, so did my struggle with how the world viewed him.

I felt enormous sense of shame and embarrassment.  I did not want people looking at me "funny".  I took Ethan out less and less.  His coping skills with being out made it hard anyway, but it was very easy for me to make excuses as to why he never went anywhere with us.  I felt guilty.  I felt like the way the world viewed Ethan had some perception on me.  I mean, I think we all consider our kids as a reflection of ourselves. If this is the case, my crying, moaning, screeching child was surly that way because of something I had done, or was not providing him.  

After we got our first wheelchair, for a long time it became really unbearable.  Taking him to the grocery store, people would either look forward and not meet your eyes, or they would stare. Kids are the worst.  They look scared, shocked, and nervous.  And, quite frankly their parents don't know what to tell them or how to handle the situation.  

It was difficult. Hard. Disheartening. Painful and very lonely.  I would try to discuss it with others, and sometimes that was helpful.  It was great when I interacted with other disability parents because I knew they "got" it.   Trying to explain it to my best friend or my sisters was hard. They listened. They cared.  However, it is just different.  It is almost an experience that you have to go through, before one can truly grasp what it is like.

Seven years later I am a lot more confident and calm about it. I let comments that I hear in others vocabulary roll off my back and for the most part I can ignore it.  My kids friends, are well aware if they use the -R- word around me, they will receive a lecture.  I have even chastised adults when I felt comfortable doing so.  I've called people on the table about it, at work and once even in court.  

So, lets talk about it.

Retard : to make slow; delay the development or progress of (an action, process, etc.); hinder or impede.

Well that pretty much describes Ethan doesn't it?  He has major global delays, his abilities have clearly been impeded by his brain injury. 

So why is this word so offensive to so many? I can only speak for me.  It is the connotation that goes with it. It's the kids running around yelling "You are a retard", or beating their hand on their chest saying duh - or - durrrr.  It's what we think of, when the word is said.  It's people using it in a glib manner, attaching a word that describes someone like Ethan who has no choice in his impairment. and comparing them to another who is choosing to adopt behavior that mimics those who have no control over their actions or movements.   It's adults who are laughing over an 18 $ salad, who mention how "retarded" the School Superintendent is.  

As the years have gone by, my irritation has grown. I find myself stopping on a dime when I hear professionals use that word.  I can still see myself standing in the office of our school district, while the secretary was on the phone.  She laughed and then said, "Oh that is so retarded"  It infuriated me. I literally just walked out of the building. The other day, a fellow facebook friend, put this in her status,

"anyone else think that the media in Utah is retarded to keep making such an issue out of the "legal high, Spice" being sold in smoke shops?! Let's just draw a road map for all the immature folks to locate it and give it a try. DER!"

I was too stunned to even comment.  I owe her a note back on another subject and I just can't even sit down and type it.

Once I was taking Victoria and her friend Marci to Arctic Circle for a shake.  I'm not sure which one it was, but one of them was making fun of the "Short Bus".  I instantly saw red.  I informed them, there would be no shakes today and then proceeded to give them the lecture of their life time.  How can you tease someone about making stupid choices and then compare them to those who do not have the ability to be aware even of what they are doing.

I have learned over the course of the last few years from various different channels politically correct language. A new concept that is being pushed heavily is called "Person First Language"  This one for me is very easy.  Simple. It's exactly how it sounds. In a sentence you put the person first, then their disability if it must be stated, last.  "This is my six year old son, Ethan. He is deafblind and has Cerebral Palsy"  Or, "My friend down the street has a daughter with Autism."   Never would I say, oh that is the Autistic kid.   That puts the disability before the child.

Some would say I am too sensitive.  That I need to just get over it.  That I have taken things beyond what they need to be.  No one means any harm. Statements are said in a hateful way about my son in particular.  All of those statements may be true.  That doesn't make them feel any different to my Mother's heart.

One thing I can tell you tho, is-- if people did not make fun of others by using the word retard, the word retard would not offend me, when attached to my child. 

I was the worlds worst offender.  I feel guilty to my toenails for all those times I said duh, and whacked my shoulder.  I wish I could take that all back.  I sure would not do it now, that is for sure.  I hope this makes sense and gives a little insight into where I am coming from, and where I have been.

Awareness always opens windows and gives us glimpses  into a life we may not understand or know.  Thank you again, for braving this window with me.




 

The Journey

The disability world is an exotic place.  Unlike any other vista I've ever visited.  Along with it comes a myriad  of heartaches and blessings associated with the journey.

From the moment I learned about my sons existence, our lives have been different.  After his traumatic birth, lifeflight, a 3 month stay at Primary Children's Medical Center in the Neo-Natal Intensive Care Unit, the discovery of his lingering disabilities, and then the exploration of just what those diagnosis' meant, after three years of Early Intervention, transitioning to the school district, delving into the vast world of Individualized Educational Programs, wheelchairs, and standers, equipment... and on and on and on. 

I still find myself in a strange place. I feel like I am on the top of a mountain looking down at a world I don't recognize.  I wonder often, just HOW did I get here.  Not only how did I get here, but where am I going?  There are a million "what-if's" lingering out there. A million decisions to be made, paths to be carved and what I hope is a lot of life still to live.

One thing I have learned on this journey is that people in our lives respond to it differently.  Some jump on the wagon and have ridden it with us. Others have pulled away. Some dance in and out of our lives, to the best of their ability.  This I can understand.  It is a hard ride.  There have been more tears, more heartache, more wallowing, more drama than most people care to be a part of.  I have not handled myself well.  Its been a huge change and adjustment for me, and I like anyone thrown out of their boat in the middle of the ocean have not responded well, done the right things, said the right things, behaved the right way.  I have wounded and offended people.

I feel like I am at a new place, a juncture of sorts.  Where I want to navigate my journey.  Rather than traveling down a white water river in a boat with no oars, I want to take charge.  I want to facilitate preparation.  I want to focus on the positive things.  I want to arm myself with knowledge so I can make more informed choices. I don't want to just "survive" this experience, I want to flourish. 

This is the new avenue I am going to pursue.  You are more than welcome to join me. I'd love some company.