TIP: 4 Ways to Chit Chat

When you see a special needs family in public, talk to the child, not the parent.

 The parent will jump in when needed. It's ok to say hello, ask her name, or just a

 kind "I love your shirt" and a warm smile.

4 levels of communication you might encounter and a few suggestions:

1) Say What?
Much like people with strong accents, some kids have speech and communication skills but may be hard to understand. It's ok to ask them what they said. Be patient with them and they will be patient with you. :)

2) If this then that...
Others may have been conditioned to have certain conversations. This means that
even if they don't seem to understand, they have been taught to have "if this then 
that" type of conversation - so when you say *Hi, how are you* They know to say *good how are you*. Reach out regardless of what your first impression makes you think. You just might be surprised!
  
3) Thumbs up!
Others have no speech at all but communicate with body language or hand signals. Again, be patient and think about the context of the conversation. I have a young friend who uses a thumbs up for anything positive (yes, please, nice, happy, yummy...) and squints her eyes shut for anything negative (no, stop, sad, icky...) So if I asked how her day was and she squinted I could ask a few questions to guess why it was a bad day - something like "are you hot?" One time our guessing game went on for a while and she finally gave me a thumbs up... I paused and asked if she was just saying that to shut me up... sure enough; up went that thumb again! We had a good laugh! :)

4) Cool Gadget!
Some use a speech device. A small board with pictures or words they can press and a voice talks for them. This is super cool and Stacey had one for a long time at school. When someone is using a device to talk with you, as cool as it is, please don't only talk about the gadget... make sure you are appreciating the conversation and focus on the person. And when they are using the board, wait quietly while they work it. If you keep talking sometimes everyone forgets what it was they were responding to in the first place!

#2 Skin Tags and Allergies

Posts with a # at the beginning are part of our story. They are from when Stacey was little. All the other posts are current day or have a year or age noted. If you're new here and want to start at the beginning, just find #1 and at the end is a link to the next part so you can read in order.

Enjoy! Thanks for being here! :)

     The specialist diagnosed her with *delayed maturation of responsive vision* In other words, her eyes worked fine, she just didn't respond to anything she saw.  He assured us she would catch up soon and sent us on our way. What a relief!!!

     I remember the day she looked at us. We were late for church and sitting in the very back. She was in her car seat still and when Dad leaned down to her, her eyes lit up! He nudged me and we both got responses out of her! I think we spent the entire service just looking into her eyes and for the first time feeling like she saw us! 

                     We had no idea what was about to happen the next week!

      On Tuesday I took her in to have a skin tag between her tushy cheeks checked. It had been there since birth but was turning black now. "Nothing to worry about, it's just falling off because her cheeks are rubbing it." Cool! Everything else looks great and off we go!  

     On Friday I went to the mall with the kids and my good friend Laura. I kept saying she seemed overly sleepy and wasn't nursing as well. I'd decided I would take her in if she looked the same the next day. That night we took the kids to ice cream to celebrate the end of a school year. I noticed some dark circles under her eyes and commented that "after this ice cream" I would cut out dairy and see if it was a dairy allergy causing them. 

     She seemed alert and content, but nursing in what I could best describe as a lazy way. The next morning we had a family style baby shower for a friend to attend and we were looking forward to a day at the Johnson's pool. I went to bed unconcerned and making mental notes of how to get everyone out of the house on time. Stacey nursed well around midnight and was tucked into her bassinet. I was going to take a shower so I would have less to do in the morning but made the mistake of sitting on my bed which led to just sleeping in my clothes...

 I had no idea how there would be a blessing in that come morning. 

Continue story here:

http://highfivesforstacey.blogspot.com/2013/08/3.html 

#1 Her story

#1

Posts with a # at the beginning are part of our story. They are from when Stacey was little. All the other posts are current day or have a year or age noted. If you're new here and want to start at the beginning, just find #1 and at the end is a link to the next part so you can read in order.

Enjoy! Thanks for being here! :)

         People often ask: "did you know before she was born?" No, we didn't. We suspected something though.  She didn't open her eyes for over 20 hours after she was born. She was my fourth child and although the medical staff showed no concern, I had that funny maternal gut feeling. 

Here is her story:

         When we were released from the hospital she was very jaundice and we went home with a light blanket. She was a little ET wrapped in that blanket for 23 hours a day for four days. I also thought that seemed unusual. We had to take her in daily for lab tests. One day I sent my hubby alone so I could rest. It was usually a quick visit and I knew he'd be home in less than an hour. Over an hour later he arrived home visibly shaken. 

        The story he told me made me sick and I vowed she'd never again see a medical personnel without me there! Usually a bilirubin test is a heal prick on a baby. The tech today was out of her mind. She tried to use a needle in my 6 pound baby's arm! My poor hubby didn't know how wrong this was until she couldn't find a vein and tried a second time and he almost passed out watching. That's when he stopped her and insisted on another tech. It was then done the right way and we wrote a complaint. What rang in my ear the longest, was that she had hardly fussed.

         As she approached three months, I was becoming concerned with her seemingly lack of interest in her surroundings. She didn't make eye contact, she didn't track objects or reach for them. I started to think she was blind. 

         Her pediatrician took a good look at her, and said "hm" a lot. I was quiet, letting him focus on her. Finally his words made my heart sink and a whole different future played through my mind. "Are you in there Stacey? Can you see me? 

         I left there trying to figure out how this horribly unorganized mother of 4 would care for a blind child! I never put things in the same place twice! It would be impossible for her to find anything. However, looking at the specialist referral in my hand I prayed a thankful prayer that it wasn't anything worse... 

Continue the story here:
http://highfivesforstacey.blogspot.com/2013/07/2-skin-tags-and-allergies.html

Intro :)

Hi!
Thank you so much for stopping by!
 
We’re just your ordinary family living with some not so ordinary situations.
 
There are 7 of us and that alone seems to rally some odd responses. O_O

Some days we feel normal and boring and other days we feel like no one could possibly comprehend how un-normal it is around here!!

So who’s writing this blog?  I’m Shannon, aka, wife, mom, mommy, mommommommommom, mooooooooooom mutherrrrrrr, and sometimes Shannon. Indeed.

The Hubs is Carlos, he’s been my hubs for 22 years soooo ya. High fives for us!! <3
The kiddos are: Oldest sis Alexia, who is married! (I’m not reeeallllly that old am I?! no, don’t answer that!) She has two sweet step daughters so I have also earned the Gramma title! 
Oldest Bro is CJ who is livin’ the college life, aka, hungry and poor and shows up when he’s out of clean clothes.
Middle Sis is Michelle, aka Shellers, ShellBell, Shell, Woman (usually when she uses the last of my chocolate milk mix) and Boo when I want to bug her.
Little Bro is Robby, aka: Scooter King, Robster, Robbykins, and an occasional Roberrrrt (usually when he uses ice cubes under his shoes to slide across the kitchen and doesn’t dry the floor.)

No, I didn’t forget littlest sis! Although all our kiddos are super awesomesauce and could provide plenty of blog material, stories and lessons, Stacey is the one who has taught us a new normal and many of the lessons shared here.

This family venture of a blog will tell her story, share tips for encountering special needs families, tips for those living a new normal of their own and insight to our life in effort to encourage you and relate to you. Some will be hilarious, some will be tear jerking and some might be boring. But that’s how life is right? We are also doing a new program with Stacey and hope to share some of it and some of her progress here too.

Soooo that’s us in a nutshell. Which is fitting because we really are nuts.

I’d love to hear from you! Let me know what brought you here and thank you so much for being here!

Be sure to join us on FB for more little tidbits! www.facebook.com/highfivesforstacey 

Middle Sis, Mom, Dad, Oldest Bro, Oldest Sis, Bro in law, Stacey and Little Bro

OOOPPSSS I almost forgot Molly!! She’s our new Australian Shepherd pup! She’s learning to give High Fives!

Meeting Molly!