Words

I feel like I need to take a minute to say THANK YOU to all of you who have been reading my little blog here.  {I have been a little busy lately...I will write about that soon}.  It is humbling to be out and about and hear such nice things from those of you who have been touched by a post in some way.  I'm glad you feel like it is helping you with your own kids...and can you believe it's being read in the USA, Spain, Germany and now Canada?  I can't!?  There is a world map on my dashboard page for the blog and the countries are lit up.  My middle daughter asked me if I was trying to be like "Dr.Two Brains" (from Word Girl on channel 12) and dominate the world...um, kind of?  LOL
So from the bottom of my heart, thank you.  I hope I keep writing things that make sense.
Okay, back to work...

Spread the word to END the word...we have seen that campaign in the news lately {The Transcript}, and I wanted to share a personal story about the little superstar in the newspaper photo.  I definitely don't want her to ever hear that word...

I remember meeting these super sweet parents in the Lab Preschool at the University of Delaware {when we were located in Allison Hall on campus}.  Their daughter happened to have Down Syndrome.  No biggie.  She was going to be in my youngest daughters Pre-K class.  We all became fast friends. 

Over the years we had plenty of birthdays and fun times, and finally we made it to one of the Buddy Walks for DS awareness.  If you are unfamiliar with the Buddy Walk, it is a huge party where kids who have DS have teams of chanting fans, and you try to impress the judges with the best cheer, best showing, or best whatever they decide.  It raises money for families who have kids with DS, and offers them services they might not have otherwise.  It's just a great day of fun for every kid there. 

The energy at the walk was like something I can't really describe in words~just very positive, happy, joy-filled...the kind of energy that gives you tears and goosebumps in a good way.  My kids had a blast, and after plenty of time in the bouncy house, we packed it up and headed home.  In the car the girls all said they had fun, they were tired.....but the one thing that stopped me in my tracks was when they started asking why Kayla got this big parade?  She was, of course, on a float for God's sake, and we all wore t-shirts {designed by her talented mother} with her name on them.  What was the big deal about her, they wanted to know {in a nice way...}?  What did she do to get this recognition, and how on earth could they pull it off too, to get this kind of treatment? 

I didn't expect that question. 

I had to take a minute to give a thoughtful, and truthful response.  I said that Kayla was very special, just like all of us are special and different from one another, and we celebrated Kayla having something called Down Syndrome.  They responded with something like, 'Oh, okay', and left it at that.  No biggie.

When we got home, my oldest wanted more information about this 'Down Syndrome' thing {she was in first grade, but if you know her, she was born as an adult...I can't explain it}.  So, because we are visual learners {and because I can be nerdy},  I took her to the computer, and showed her the karyotype {the image of chromosomes} for DS and I told her that because of that third chromosome on the spot labeled "21", it meant that Kayla had 'Down Syndrome' {I should add Trisomy 21 does not make up all cases of DS, but I was talking to a first grader, so I kept it short and sweet}.  I told her most of us only have two copies of that chromosome, she had three, and that's all that made her 'different'.  Her response I'm sure was something adorable, {I have kept journals, you know...don't make me go through them all and look it up....and yes, this convo is somewhere amongst thousands of pages}.......but it ended up with something like, 'Wow, that's it?  And she got a PARADE?'.

Um, yeah, she did.  No biggie, right?

I love that they didn't know what was different about 'little miss'.  I love that it never mattered to them before, and it doesn't now.  If we teach kids that we are all different in many ways, then we're really all the same~ aren't we?  We need a little more of that in the world, for sure.

Have a great day!

PS~her parents blogs are listed to the side of this post....check them out.  They do tons for parents whose children 'happen to have DS'.

{Jenn}

Meeting

Here is a follow up to my previous post about being prepared for meetings in regard to your child.  I hope it gives a framework that you could easily implement for your own little one, or at least makes you think a little harder before walking into that meeting.  I know I've been a little heavy on the education related posts this week...but it's just what is spilling out of my brain right now :)

{Let me give a shout out to all the D.A.D.S reading this...I have a friend with some super great kids, one of whom has Down Syndrome.  He liked a recent post, and that makes me happy.  I hope these posts are helpful!  Another friend, who also has amazing kids is my friend Amy, you can find her blog here.  She offers the Mommy perspective on having a child with Down Syndrome.}

{See, I told you I can go on a bit, now back to business......}

When you decide that you are ready to meet with the doctors, or therapists who will be steering you in which direction you need to go for help for your child.  It's important that even though you may feel unclear about exactly what is going on, you need to have specific talking points to discuss with the doctors. If you choose to walk in completely unprepared, you may as well throw that co-pay money out the window and save yourself the drive to the hospital, or doctors office.  You are not helping your cause.

I am going to give you an overview of what my over-achieving self walked in with that day, for that first steering meeting for my daughter.  I am not saying you need to walk in with a novel, but do yourself a favor and take something.  You will impress yourself with your level of preparedness, and it offers a sense of control over what may feel like an area where your hands are tied.
Even though I was walking in to discuss everything I felt wasn't "quite right", my first talking point was of how amazing my daughter is.  I discussed her strengths specifically.  Remember in an earlier post I said to be clear about what those strengths are~don't tell them she 'likes to play'.  Um, this is not helpful...this describes almost every kid on earth.  Be specific in your child's strengths.  Just take your time.  Think.  Write them down.

I broke my areas of concern down into several areas, then expanded on each area with specific examples of what I was referring to.  It's amazing how things become clear when you write them down.  Things I thought I could not really articulate seemed to come to the surface in a very tangible way.  Give yourself some credit before you even start.  You can do it with or without an 'education' background.  Promise.

And the "areas" I focused on are....{well, a whole section on strengths first, and then....}

1. Physical Issues
2. Auditory Issues
3. Speech and Language Issues
4. Academic/School Concerns

Now remember, these are the areas I had of concern for my daughter.  Your list may be longer, different, or shorter.  That's OK.  Just make the list, the doctors will be so impressed....

1.   Physical Issues-
1. Was there anything of note when your child was born?  Did anything go wrong?  Was there something odd that the doctors could not explain?  There was for us.  Sometimes things that seem odd at birth can affect a child later in life.  Sometimes those things do not surface until the child is school age.  Sit in a quiet place, and try to remember.  Maybe I will expand on this down the road...
2. Does your child have any aversion to textures?  Smells?  Clothing?
3. Is there behavior out of the ordinary during daily, 'ordinary' situations?  Is there a pattern?
4. Is your child a rough, physical type of play kid?  Or does your child remove themselves from other children?  Remember, parallel play {where children play independently with the same toys/game side-by-side another child} is developmentally appropriate in young children, but not so much as they get out of pre-school.  Then it can become detrimental to their social development.  If you need to, 'Google' "developmentally appropriate play for my _____year old child".  You will easily find checklists that may guide you in the right direction, or point out red flags.
5. Does your child have a sense of danger that you feel is appropriate?  Are they reckless?  Have they ever had a head injury?  These two areas {appropriate fear and brain injury} can be very closely tied together, and the doctors will want to know this.
2. Auditory Issues
1. Can your child follow a 2-step direction?  More steps?  Less steps?
2. Do they respond to you when you are in crowded spaces where noise is a factor {like if you are in BJ's, or Costco...the acoustics in there are rough}?
3. Does the child complain that they cannot hear the teacher, yet their hearing screenings have come back perfect?
3. Speech and Language Issues
1. Can your child explain what they are trying to say, or do they get frustrated and shut down?
2. Does your child understand that words have specific meanings?  Like when you point to a door, it is always called a "door", not the "window", or the "wall".  Mislabeling things is a speech and language concern.
4. Academic Concerns
1. What are the child's teachers saying?  Where are their areas of concern?  They spend many hours with your child each week~listen to what they observe.
2. Is your child socially aware, or awkward in classroom situations?  You may be surprised how different your child acts in school.  Home is a comfortable place....school can be daunting.  Their behavior can say alot about what is going on with them socially/emotionally within the classroom.
3. Does your child participate willingly in classroom discussions?

I could go on forever, but I hope I am making clear the things I had to consider when helping my daughter.  Like I said, your list may look different than mine, but that's the point.  It's for your child, with different needs.  I just want to help jog your memory.  When you are in the thick of wanting to help your child, you are probably overwhelmed.  This will help make it manageable.  Think small pieces.  You can do a little bit each night.  Ask your wife, husband, partner, relatives...what they notice.  They may see some things you were so "used to" that they didn't stand out. 

Make it something like the above structure.  It will give you talking points, and the doctors a framework to start with.  They are learning about your child, and this information will be invaluable.

Just don't walk in with a rambling manifesto like the unibomber, that would be weird {I have taught you better than that}....you got this! Any questions, ask me.

Have a great day!

{Jenn}