Choose Your Words Wisely

I endured a horrible experience today, and I feel obligated to share it with those who choose to read what I write.  There are a few reasons why this ordeal really bothered me, and it started early this morning.
My morning started off with like most others.  Alarm went off, I got myself ready for the day, and started packing up for yet another doctor appointment.  I was looking forward to some fun with my kids after the appointment, because we were planning to go to the pop jet fountains at a local mall.  Stony Point is an upscale mall in our area that is a frequent location for those with kids and dogs to visit.  The entire mall is pet friendly, and most stores even allow you to bring your dogs inside.  The pop jet fountains are a big attraction for children, and while most of the kid friendly shops and restaurants are no longer in the mall... people bring their children from all over the area to play in the water.  I have been to the mall a number of times for Abbie to play in the water.  Brady has been once before to play, however... he wasn't able to get into the fountains much because neither myself or our aid had the correct clothing to get wet.
Our appointment was from 930-1030, and Derik, my husband, was planning to take our daughter to work with him.  His restaurant is in Stony Point Mall, so I decided I would pick Abbie up, we would change clothes, and go to the fountains until lunch!
Since I knew Brady would need help, I changed into a bathing suit.  This bathing suit is called a swim dress, and looks more like a summer beach dress, than a bathing suit.

We unloaded our stuff on a bench at the fountains, and headed to the water.  I kicked my shoes off before walking over, and snapped a few pictures of Brady laughing and enjoying the water.  

Mission accomplished!

I returned the stroller to put my phone back in our bag, and was immediately approached by a security guard.  The following conversation took place...

SG:  Mam, you have to wear your shoes here.

Me:  Oh ok, I didn't know I wasn't allowed to take them off.

SG:  You know, the fountains are really for the kids.

Me:  Right, I have 2 children playing in them now.

SG:  Adults aren't supposed to wear bathing suits.  This is a shopping mall.

Me:  Ok, the only reason I am wearing a swimsuit is because I have a special needs child who needs  

         help in the water.

SG:  Well, if you are over here, and he is over there, how special needs can he be?

Me:  (Now wearing a look of complete shock.) Ummm, we have a medical aid with us, and she is
        right beside him.  I was just putting my phone away.

SG:  And, she is appropriately dressed.  

Me:  I'm sorry, are you telling me that I am dressed inappropriately? I'm wearing a dress.

SG:  (rolling his eyes) Looks like a bathing suit.  

Me:  It is a bathing suit, its called a swim dress.

SG:  I just said we don't allow adults in bathing suits.  

Me:  Are you telling me I need to change?  

SG:  If you dressed like her (pointing at our aid) than there would be no issue.  

Me:  Excuse me?  This is so beyond inappropriate, and I am in disbelief that you are saying all of this
        to me.  I won't go back in the water.  I didn't bring water appropriate shoes, as I didn't know they
        were required.  We have been here plenty of times, but I have never needed to get into the water.
        I wasn't aware the are necessary.  

SG:  You didn't read the rules posted all over?

Me:  I have been to this mall many times.  We have played here, eaten here, shopped here, and my
        husband works here.  I have never even noticed these rules, but I didn't think we were exhibiting
        any type of "rule breaking" behavior.

SG:  Where does your husband work?

Me:  Are you trying to get him involved?

SG:  No mam.

Me:  He is the Managing Partner at (I am not going to include the restaurants name).

SG:  Well, you heard me and if you can take up any issues you have with mall management.

Me:  I believe I will...

and off to mall management I headed.

I would like to say that the mall management staff was more than helpful, and even bought our lunch in attempt to make things right.  They were stunned by the conversation that took place, and incredibly apologetic.  They assured me that the security team would be retrained and that this should not be a future issue for myself or any guest.  I met with the Head of Security, and the Head of Marketing, and both were wonderful.  

My problem with all of this stems from the PERSON, not the mall.  This is not the first time, and will not be the last time that someone oversteps and discriminates against my son.  I have been questioned by strangers as to why we have a handicap pass, I have been told that I should "feed my children" when Brady was having a tantrum very unrelated to hunger in a store.  I have been ignored when walking through crowds, had people let doors close in my face.  Most of this happens to people without special needs children.  HOWEVER... there are a lot of things that never would.  

Words hurt.  Words can cut deep, and they can leave permanent scars.  I believe that we should treat others how we want to be treated, and that doesn't mean that you say the first thing that comes to mind.  I blogged before about inclusion.  Making sure that everyone, including those with special needs are included, and stand behind this.  You shouldn't be afraid to speak to some one just because they have a disability, but you should choose your words wisely.  I recommend doing this when speaking to anyone. 

WARNING - Momma Bear Mode activates upon the slightest idea that you are treating my child unjustly.  Do not question my son's special needs.  Do not question anyones.  Just because you can't see the disability, doesn't mean it isn't there.  

USE KIND WORDS.  BE KIND TO OTHERS. THE END.

Learning a New Language

I never thought that I would learn another language.  I speak English, and I speak enough Spanish to get me by in an emergency.  After graduating high school, I thought my language learning days were over!
ENTER MY SON WITH A HEARING IMPAIRMENT
Even when we learned that his diagnosis included profound hearing loss, I didn't really think sign language would become a part of our lives.  We did baby sign with Abbie, and with Brady.  Helping them communicate with us before they were able to speak was wonderful.  Signs like "more", "please", "eat", "thank you", "all done", and "drink" were the only thing we taught and practiced.
I knew the ASL alphabet from my childhood, but spelling out words is still very challenging.  Trying to figure out the letter that is being signed while spelling a word is not easy!
As his therapies began, and we met more and more people that could sign, we added signs to our vocabulary.  We use signs like "play", "you're welcome", "calm down", "help" often.
So, when I was invited to attend the Parent Child Advocate Group this month, I was excited and eager to have the chance to learn more!  I registered myself and the kids, and we headed to the meeting with no expectations!  Upon arrival, we were thrust into the world of hearing loss in the best way possible!  Ironically, we knew one of the families there from VCU Audiology Camp!
The kids were taken into a room to play games and do art.  The teachers in these classes spoke and SIGNED everything to the kids!  The children were learning signs without having to SIT and learn!
The adults were in the main auditorium.  There were people there with all different levels of proficiency in sign language.  Many of those attending were profoundly deaf children and their families.  They knew a lot of sign and had many conversations in silence.  I am completely infatuated with watching an ASL conversation! A signed conversation is really a beautiful thing to see.
In our household, sign language cannot and will not be our preferred method of communication.  However, I want to ensure that we can communicate with Brady, and am willing to do whatever to make that challenge easier.  Learning sign and incorporating it while we speak makes it easier for us to understand what Brady is saying.
We were at the meeting for 4 hours!  The first 2 hours were intense learning, and then we broke for lunch.  I debated leaving at this point, because I felt very overwhelmed and defeated.  It is hard to feel lost for 2 hours straight!  BUT... In reality, I wasn't lost at all!  The last hour was a quiz on our knowledge of the signs we learned, and I was shocked to see how much I retained!

I learned 47 new signs!!!

Yes, you read that correctly!  The theme of the language learned this month was school and military, so there is a large chance that I will not use a good amount of the signs that I learned.  However, I think I can apply them, and I will continue practicing them!  My sign vocabulary includes about 75 signs and the alphabet! 

This wonderful group meets every month, and I can't wait to go again in August!

Thank you so much to Andi for inviting me, and for encouraging me through the class!  You are such a blessing!  

Dear Parents with "Normal Children"

I sat on a movie set this morning, filling out paper work for my minor children to play extras.  I was sitting at a table beside my children, while our full time medical attendant kept them entertained with crayons!  My back was to the table of 6 kids while I completed the forms, and I suddenly heard something that made me very sad.  One of the little girls, asked "What is on his head?"  When I turned enough, I could tell she was pointing at my son.  Brady is 3, and wears a cochlear implant on his left ear, and a hearing aid on his right.  The question isn't what bothered me, and neither was the pointing.  It is what happened next that really made me think.
Our attendant, Cassidy, responded with "It helps him hear."
The little girl replied, "he can't hear?"
Cassidy said, "not without these special ears."
Then the little girl's mother chimed in, "Shhhhh, that's enough."

PROBLEM
When a child asks these questions, they are innocent.  The child is curious, likely hasn't seen something like it before, and genuinely wants to know it's purpose.  Adults forget sometimes that children ask that obnoxious "WHY" question a lot, because they actually don't know the answer.

So to the parents of the many beautifully curious, "NORMAL", children... I want to ask you a favor.  I can't speak for all special needs parents, but I can speak for our family.  There is NOTHING wrong with my children!  They are amazing, and completely perfect.  We are not ashamed of ANY thing about them!  Brady has visible disabilities, and Abbie has some that you can't obviously see.  We aren't ashamed of them.  There is nothing to be ashamed of!  We are happy to answer questions, and even encourage them!  When a child asks me a question about Brady or about Abbie... I perk up!  It gives me a chance to educate someone young and moldable!  I can teach them about this, and they will learn that things like a cochlear implants, wheelchairs, walkers, braces, and so much more can actually provide Brady ABILITIES, instead of leaving him enabled by his disabilities.  I can teach them that Abbie's medication helps her stay safe.  I can teach them that sign language helps us understand Brady.

I see NOTHING shameful in these opportunities, until a parent jumps in and makes it uncomfortable.
When you hush your child, tell them not to ask questions, or even worse... walk them away from us, it makes us feel like we are lepers.  Some people avoid eye contact, some avoid conversation, others literally run away from us.  It is hurtful.  You can't catch a brain abnormality, epilepsy, or a hearing loss.  There is nothing contagious about my children's handicaps.
So, please... let you children ask questions.  Let them learn that "NORMAL" is a terrible word, and a concept that should be all inclusive.  Explain to them that sometimes people need things to help them hear, see, walk, eat, and live.  Explain to them that those people are perfect, just like they are.
Don't pretend like we don't exist.  Don't teach your children to see through us, avoid us, and treat us like we don't matter.

We are blessed that Brady has glasses, they help him see!  We are blessed that Brady has a cochlear implant & hearing aid, they help him hear!  We are blessed to know some sign language, it helps him communicate!  We are blessed to have medications, they keep my kids from having seizures.
I am so beyond blessed that I am able to raise Abbie in a home with a sibling who has an obvious disability.  She will never think less of anyone who has a disability.  It is NORMAL!!