Time to get back

Today someone asked me about the time frame in which Landon did some.  To find the answer I came to this blog to look  up a post I did.  To be honest, I just didn't realize how far he had come in the past several years.  Looking back over my posts and seeing all the videos left me with the need to start back again.  This blog has never promised to be eloquently written because that is just not me. At first the blog was written so that I could keep our family up to date on Landon and how he was growing.  Now, I think that will be one purpose but it will also be for us to be able to look back and see how Landon has grow.  Let's see where this takes us :)

Fun Bath Idea

I am addicted to Pinterest and I found this really cool idea.  I found a whole tube (15) of glow sticks at Target for $1.  They are non-toxic, just in case they were to leak.  

I tried it out and Landon loved it.  He wasn't sure about it at first but once I showed him what it was he had so much fun.  Of course I didn't leave him unsupervised but it was a fun idea for a fun and different bath time.

Disclosure:  If your child is in Landon's class this year don't be surprised when you see this idea as part of your Valentines Day Card :)

Christmas....finally

It is the middle of January and I am just now posting about Christmas but that's how it goes on this blog.  What a great time we had with family.  Travis got to spend some time with his family which he really enjoyed.  I lost count of how many puzzles he and his mom worked but it was something like 5.
Because my brother lives in Nashville now, we celebrated Christmas with his family the week before Christmas. Landon was so excited to open his gift and couldn't wait to play with his new Imaginext Toy Story 3 Tri-County Landfill.  But more than his new toy, Landon LOVES his cousins Skyla and Spencer and it's great when he gets to spend time with them.  I hate that we all live so far away and the time they get to spend together is so little but we will take what we can get.  The only thing missing from this day was Travis. Landon and I came to Knoxville about 4 days before Travis because he had to word until the Wen.  before Christmas.  The pictures from this day are great except for the fact that Travis is missing.  We wish that he could have been there!

Christmas Eve we went to the Kerr's to have a great meal and open lots of goodies.  Landon got another Woody (Hawaiian Woody) from Uncle Kevan, Lego walkie talkies from Gee and Papaw,  Matchbox cars and track from Uncle Brian, and iTunes card from Caylin and Megan.  This video shows how much fun the Kerr boys had with Landon's race track.  I guess there are just some toys that you just never outgrow.

I wasn't sure that Landon was going to accept adding a new Woody to his collection of friends but Uncle Kevan will be happy to know that we now travel everywhere with not 2 Woody's but 3.  

We spent Christmas Day at the Curington house.  We had a great time with my mom, dad, April, Bobby, Cory and Ryan.  It was a great day and of course Landon got lots more fun stuff the play with including a play saxophone  from Aunt April and Uncle Bobby, some cool games from Granny and Papaw and a BIG Toy Story coloring book and music CD from Cory and Katelyn.

All of this being said....we didn't forget that Christmas is the celebration of Jesus's Birthday.  We make sure that the time leading up to Christmas day and even Christmas day of we talk to Landon about Jesus being born. He has his own manger scene to play with and we read lots of books about the real meaning behind Christmas.  So......don't judge this post as we focus on the wrong things.  But honestly, we try to teach the idea of Christmas all year long and not just in December.  

What God can do

I found this web site and it so touch me.  I loved hearing how God used this young man to encourage his parents to go on this mission trip and in turn touch the lives of who knows how many children with special needs. I can't wait to see how God is going to use Landon as the years pass.

5th Birthday Party

Landon's birthday is on a Sunday this year so we decided to have a birthday party on Saturday.  Our close friends the Reeds have a little girl, Emily, whose birthday is on the 22nd so we decided to have their birthday parties together this year. The gifts were so thoughtful, and we would like to say thank you, but the best part of the day was getting to spend a special day with friends.

 

Here are Landon and Emily's cakes.  Emily wanted a "Princess and the Pauper" cake and her mom, Allison, came through.  

finished cake with candles

Landon loves the Birthday song and blowing out candles

Travis, Landon, and Beverly

This is the first year that I think he really enjoyed opening gifts with phrased like, "Oh Wow" and "Cool" and, "OOO".  It was so much fun to watch him.   

Landon playing the guitar he got from his mom and day

 

 

Landon playing the drums he got EARLY from his mom and dad.

 

The Making of the 5th Birthday Cake

The time has arrived to start working on Landon's Birthday Cake.  Wow!!  I can't believe that he is going to be 5 years old this year...Oh how the time flies by.  This year was another easy year to come up with a theme for his birthday:  Imagination Movers.  For those of you who don't know who they are, here is a quick link that tells you and little about who the movers are and what their show is like.  Landon LOVES to watch their show which includes singing, dancing, playing instruments, and NINA!!  Anyway, back to the birthday theme, The theme was easy but finding a cake idea to match was not as easy.  I finally found a cake I liked online, sorry to whoever make the cake: I can't find it again, that I thought was going to be easy to make and this is how it went:

I used a block to help me level each cake (That's what I have so that's what I use)

Travis made me a template so I could cut the cakes to look like gears

If I had been smart I would have stacked the two cakes together before cutting but I wasn't thinking that far in advance so I had to stack them and use the first cake as the template so that they would match up exactly.

Landon helped me make the icing

Icing the cake was the hardest part.  When I picked this cake I thought this would be no big deal.  Boy was I wrong.  This is the part that took the most time.  Trying to get the edges smooth was not fun.

This is the end product.  Warehouse mouse piped onto the top layer, and FYI, this was my first time ever piping ANYTHING!!  It was easier than I thought it was going to be.

I was overall pleased with the outcome.  There were a few things that bothered me such as you could see some of the "crumbs" through the icing but that comes from lack of experience and there was nothing I could do about it.  All that matter's:  Landon LOVED it!!  I could ask him, "What kind of cake do you have?" and he would say, "Movers."  I would ask him, "Who is on your cake?" and he would say, "Warehouse Mouse".  Isn't that what it's all about?

Car Camping

We finally did it.  We went, as Travis calls it, Car Camping.  Some friends of ours decided it would be great fun to have a multifamily camp out.  Now this was not your typical camp-out.

not a great picture but it's hard
to take a pic of a moving little boy at
wearing a head lamp!

There were about 15 families that came, it was in the back yard of Travis' Boss's family home (not where he lives but where he grew up) in the big town of Arvonia, VA.  This location meant that we had the benefit of having indoor plumbing, which is a big plus for me!  Because Travis is such a big Back Packer he never really considered it camping unless you had walked, a really long way, to your campsite.  Now that we have Landon I think that maybe he has changed his mind, a little bit, in certain circumstances. We started planning for this outing by making a trip to REI for suitable car camping items.  After much research, by Travis, we found the perfect items: tent, mattress pad, head lamp for Landon, and lantern.  Now we were ready!


The outing started with an inflatable bouncy.  Yea I know, that's a little odd for a campout but this outing was set up for families for little kids and it was great fun.  Landon jumped, ran, and flopped for hours.  I think Travis was more worn out by night fall than Landon was from jumping, running, and flopping with him!

Once it started getting dark it was time to watch a movie.  They had a huge blow up movie screen so we gathered around with camp chairs and blankets and watched 'Rio".  Watching a movie was a great idea because how do you keep up with  several young children in the dark?  The movie was a big hit and by the end Landon was barely awake and ready for bed.

Landon sleeping in the tent
 with "blankie" on his head.

Sleeping in the tent was a great adventue within its self.  Landon thought it was so fun to crawl into the tent with mom and dad and sleep, in the middle of course!

I wish that I had taken more pictures but we were having just to much fun to stop and grab the camera. 

Social Stories

A common "issue" with kids with Down Syndrome is stubbornness.  Yes, I know, all of you parents out there who have little ones are saying," all kids are stubborn" and that may be true but kids with DS tend to have a little extra punch.  This is not true for all kiddos but a lot.  Also, this stubbornness  is not always a bad thing but can be a bit frustrating.  Here lately we have been dealing with a little of the battle of the wills at our house.  Landon is really testing his boundaries and this is a lot easier to deal with at home compared to dealing with it while we are out or at therapy.

The two areas that have been VERY difficult have been during speech therapy and swim lessons.  After a little research I decided to try the idea of creating a social story.  Social stories were originally thought of for kids with autism but really work for any child who would benefit from expectations written out and read over in book form. I thought I would make a social story for speech first to see how it worked.  I took the camera to speech and took pictures of EVERYTHING.  Starting with what he does while I sign him in to what he does when we are done with speech.  IT WORKED!!!  I didn't really have high expectations but just thought it was worth a try, and like everything else we do with Landon, he proved me wrong.  Before I did the social story, when I told him we were going to speech he would say, "no, no, no" and during speech he wouldn't follow the schdule, wouldn't cooperate or do what was asked of him.  Since writing the book and reading it with him at least one day before and the day of speech, none of those things are true.  He has been obeying Ms. Lori and acting like he had been a few months ago.

Because the social story seemed to be working with speech I decided to try to make one for his swim lessons.  His teachers are college students and they were not very firm with him.  He was getting out of the pool several times and ignoring them when they would ask him to get back in.  He would say, "all done, all done" after not even really trying to do what they asked. so....I took the camera to swim lessons and took lots of pictures. Then the social story was created.  We read the story several times before swim lessons and guess what....the best behavior he has had since he started. :) 

Quincadence or not... I don't know but i really think they work.  I look forward to going to speech again and am thankful that he is finally showing his swim teachers what a good little boy he is.  It's amazing that something as simple as a story can change a situation.  I am very thankful.

World Down Syndrome Day (3/21)

Today is World Down Syndrome Day because the date is 3/21 (3 copies of the 21st chromosome).  In the years past this day has come and gone without much thought.  Not that celebrating Landon isn't important but I feel like it takes more than just a day.  More than just posing something on Facebook, or Tweeting, or wearing a shirt or button.  I feel like for people to really understand the positives of children and adults with Down syndrome they have to see them out in public doing what every other child and adult are doing.  They have to hear me say, as a parent, that I really love my child, that I wouldn't trade him for anything, that I feel blessed to have him and that he teaches me new things everyday.  People need to see that Down syndrome is not who Landon is, it's just one small aspect of what makes him special.  For some reason this year WDSD has been on my mind a lot more.  Not for the "awareness" reason but more for reflection.  I have just been thinking about Landon.

I was thinking about what I wanted to write in this blog and so many thought came to mind.  Sadness in the thought that 90% or more of unborn babies are aborted just because their parents get a diagnosis.  Sad that number may rise due to new medical technology.  Sad that not everyone gets to experience life watching a child with Down syndrome grow and develop whether that be via a child, grandchild, cousin, niece, nephew, or just close friend.  I have to tell you it is AMAZING.  Now notice I didn't say "easy", that it's not.  But I don't know any parent would tell you that it's easy! BUT I also thought of joy.  Joy in what the Bible says:

Psalm 139:13-16

For you created my inmost being;

you knit me together in my mother's womb.

I praise you because I am fearfully and wonderfully made;

your works are wonderful, 

I know that full well.

My frame was not hidden from you  when I was made in the secret place. 

When I was woven together in the depths of the earth,

your eyes saw my unformed body.

WOW!  Did you just read what God said about Landon in the Bible?  It says that he is WONDERFULLY made.  That God created his inmost being (including one extra chromosome).  I love to read those verses and think about how perfectly God made Landon.  Just the way HE wanted him.

Well,  that it.  Just a quick thought from a mom who loves her little boy more than anything.

Happy World Down Syndrome Day

Am I the only one?

There are times when I wonder if a mother of a typical developing child feels the same way I do.  I wonder if other moms notice when their child does some the seemingly smallest task.  I first began to think about this when Landon was working on sitting up.  I had no idea that there were so many steps to this task.  I just thought that one day you looked down at your precious little one and they were sitting.  That was not the case for us...it took lots of work and many weeks of physical therapy to accomplish this goal.  But let me tell you... when it happened, we cheered and clapped like no ones business.  Do moms of typical developing children even notice the first time they see this?  Do they throw a "party" and have a special dinner because of the accomplishment?  I don't know but I know what happened in this family!!

I say all of this to set up the occurrence at speech this week.  Landon has been working so hard on his speech the past 6 months.  He gets therapy at school and then we also take him to private speech at Kluge Children's Rehabilitation Center in Chartlottesville once a week for an hour.  Lately he has been working on saying "ing" verbs in a three word utterance with no prompting.  Ms. Lori, his therapist, shows him a picture and the goal is for Landon to say, for example, "The girl is running".  Many of the pictures he has seen and knows what the verb should be but needs help putting the whole sentence together so Ms. Lori helps him by using sign language.  Well, yesterday Ms. Lori showed him a picture that he had not seen before.  It was of a baby taking a bath.  Landon looked at the picture, immediately said, "Baby is..." and then there was a pause.  You could see the little wheels turning in his head as he was trying to find the right word.  He knew that the word should probably end in -ing which is why there was a pause but he couldn't come up with the right fit so he said "in bath tub".  You would have thought that he just recited the Gettysburg Address.  No, it wasn't exactly what we were trying for but it was so much more.  We clapped, cheered, gave high fives, and praised him. And then it happened.....I began to cry.  My little boy had just said, "Baby is...in bath tub"  all by himself, with no verbal or signed ques.  It was a moment that I will never for get...a moment that I wonder how many moms would have over looked?  I am so thankful that these "little" moments don't pass me by.  I am so thankful that my little boy's hard work pays off.  Honestly..... I'm just proud of him.

It's been a while

I hate that I have not blogged in such a long time but that's just how life is at the Kerr house. I do have some really fun pictures that I thought I would share.

First, Landon went to his first swim class, well O.K. it was just his evaluation but still he was in the water doing things with someone other than me!! The class is at Kluge Children's Rehab Center. He has 2 teachers that work with just him. There can be only up to 3 other children in the pool at the same time but they each have their own teachers. He will go each Friday afternoon. I really hope that this is something that Landon will like...we will see. Anyway....here are some pictures of the class. (look how small the pool is :)




Second, my mom and dad came for a nice visit. While they were here we had great weather so my dad helped, meaning "did it all", to clean up our back yard. It now looks a great play area instead of a wooded area. Thanks Dad!! Landon had a great time playing both inside and outside with his Granny and Papaw.





Things here are moving right along. Nothing overly excieting just the normal day to day stuff. I am looking forward to the warmer weather arriving and staying for a while. I am already trying to think about this summer and what I can do to to help Landon continue on his fast pace of learning...more on that to come.

Week 2 Home School

This has been kind of a crazy week. Week 2's Lesson Plans actually didn't end until today due to a little cold Landon had. I already that this coming week is going to be equally crazy due to doctor's appointments. But we will work it all out. First I would like to share with you a video of Landon's first Home school created book for this year. I put it together in a video. I hope you enjoy. ( I hope to add a clip of him signing the Bible verse but I'm just learning how to use this site to make the video's so it may take a few days.)

Make an on-line slideshow at www.OneTrueMedia.com

Here are some of my favorite pictures for our home school this week

matching numbers to the correct picture

"Reading" Twinkle, Twinkle Little Star with his pointer

the sun he made by painting a paper plate, gluing yellow triangles around the edge, and sprinkling glitter

Week 3 Lesson's will start with the alphabet and "math".  I will describe how I am working the math program and what book I am using in my first post about week 3. 

Week 1 days 2&3

School is going great...even though not as planned.  Landon has had a little cold and a VERY runny nose plus he went to school on Wen in addition to his normal days because it was picture day.  All of this has caused us to do Home school a little off schedule.  We actually did days 2 and 3 on Sat. and Sun.

Landon really seems to be enjoying our school time together.  He still loves using the pointer, I'll have to get a picture of that, and the "art" of learning.  He sits right down and does everything like we have been doing it for months.  He is such a good boy!

Some have asked why I haven't started with any alphabet activities.  Well,  I wanted to get into the grove of things first.  We will start alphabet activities on week 3.  Here are some pictures from the past couple of days.

Day 2 Creation Book

Day 3 Creation Book

writing practice on paint baggie

Woody needed some writing practice as well:)

I can't wait to show you the finished Creation Book.  I have taken up close pictures of each finished page and will post them all together at the end of the week.  Maybe the video of him saying/signing his Bible verse will accompany it.

We love you all and hope that you are enjoying the posts.  Our next visit to Knoxville is soon...The Buddy Walk is Oct 10.  I can't wait!!

Week 1 Lesson Plans

"Paul Daugherty 2009 Keynote Address"

A friend of my found this great Keynote Address made at the Remarkable Families Symposium.  Mr. Daugherty has a daughter with Down Syndrome.  His Keynote address was powerful and I wish everyone who teaches Landon could read this and really "get" what he is saying.  Please take the time to read:

Paul Daugherty 2009 Keynote Address

Home Preschool Week 1 Day 1

Today was so much fun.  It was our first day doing preschool at home.  Landon did great and really enjoyed the Nursery Rhyme, singing time, and most all of the activities especially when he got to use the pointer.

This week and next week we will be learning about how God created the earth.  Today was about day one which is the creation of the Day and Night.  During out ABC time we are going to start focusing on one letter per week in a couple of weeks but to get us started we are just doing some letter matching.  Because Landon already knows most of his letters we are going to use the letter of the week as a review and a spring board to do activities that will encourage reading, fine motor skills, gross motor skills, and speech.  The letter matching today was interesting to watch.  I helped him with the first two he drew from the mystery box by showing him where to place the letters.  When he did it by himself, you can see in the pictures,  he put the magnet letters on top of the printed letters.  That was fine but just interesting.  I can't wait to see what he does tomorrow.

Our Bible verse for the next couple of weeks will be Genesis 1:1 "In the beginning God created the heavens and the earth".  I taught him the signs today and it was so touching to see him working on it.  I am hoping that by the end of the week or at least by the end of next week he will have it down pat and I can video it to share.   Here are some of the pictures that I took while he was working on some of the activities.

making "Creation Booklet" day 1

gluing paper for his "Day and Night" collage

pulling letters from the mystery box for his letter match

Enjoying his "Day and Night" Oreo snack

Letter match

In case you missed my lesson plans for this week:  Week 1

Getting ready

Tomorrow Landon and I will start our school time.  I'm working on what exactly to call our school time but for now it's just "Mom's School".  Today I thought I would show you what my plans are for the week and how I plan to do Calendar Time.  I use the word "plan" because everything may change the first few days if things are not working as I had thought they would or, as I already now for this week, our schedule may change.

Here are some pictures of what our Calendar looks like.

 For the calendar we will count the days up to the current date.  I am going to have 3 numbers on the green board and he will choose the number that will come next.  Now, I know that he is not ready to do this on his own and I know that he doesn't and won't know his numbers up to 20 to 31 for a while but there is no reason not to expose him to these numbers.  I will help him find the correct number by giving him hints such as, "which of these numbers has a 3 in it", or something like that.  I will read the number choices to him correctly just so that he see and hears the numbers and who knows, maybe he will learn these numbers quicker than anyone thinks.  After the date we will "read" the month and the day of the week.  During this time we will say or sing all of the days of the week and the months of the year.  When we are done we will go over "Today is (day of the week) ,  (Month) (date).  I don't have a spot written out for this yet but I'm thinking I need one for Landon to see as we say it.  I'll have to work on that.

The other parts of our calendar will be "Today, Tomorrow, and Yesterday",  "The Weather Outside Is", "What Color?, and "How Many?".  For "Today, Tomorrow, and Yesterday" we just go over it so that he hears those words.  For "The Weather Outside Is" we will open the door go outside on the porch and look.  We will talk about what we see and then come back in.  I will have 3 choices for him to choose from on the green board and he will pick one and place it on the chart.  The color and how many charts are my creation.  Learning his colors, or at least consistently telling me the correct color, has been difficult so I wanted to add something to our daily routine that would specifically go over it at least once every day.  I will either have a color word put on the chart and Landon will have to select the correct picture that matches from the green board or I will have a picture up on the chart and he will have to pick the correct word.  The "how many" chart will work similarly.  I will put up a number and he will select how many characters he needs off of the green board.  I made the characters Toy Story to help with the interest level.

Each week we will work on a new nursery rhyme and I will make a chart so that we can read it and do other activities with it.  I have a little pointer that looks like a hand pointing that we will use with the calendar and the nursery rhyme, along with many other things.

Here are the plans I have for Week 1.  I hope you enjoy them and I will post pictures of some of the activities soon.

I have mentioned the "green board" several times so I guess I should tell you what that is.  I bought a cork board and covered it in felt to make a flannel board.  My calendar time pieces all work with Velcro so the pieces will stick to the flannel board.  I will put Landon's choices up on the board for him to choose from.  It works great.

New School Year

Landon's first day of school 2010

Buzz Lightyear backpack was a must

Landon's first day of Preschool was Monday.  He is getting to be such a big boy!  This year he is going twice a week but staying until 2:30.  I must say that Monday was the longest, loneliest day I have  ever  had.  I had so much to do around the house but I caught myself looking at my watch every 30 min. or so wishing it was time for me to go pick him up.  I must confess that I did go early to get him.

There are several changes to Landon's school schedule this year.  First,  Landon's teacher from last year is no longer there and we will miss her very much.  Second, Landon is at school from 8:30-2:30 each  day which means that he is getting his nap there.  That was one of the things I was most worried about.  I wasn't sure how he would do laying on his little mat, STAYING there, and going to sleep.  They said he did great, I'm guessing he was so tired from his busy day he would have napped anywhere.  The third change, what he does during the day. This is the part that I am most excited about. I drop Landon off in the class he was in last year, he has a little play time, eats a small snack and then goes to the 4 year old class.  This class is not a special needs class but rather a class of children that will be going to Kindergarten next year who may be lacking  a few skills they need  to be successful. This class is focused primarily on academic skills and strengthening fine motor skill needed for tasks such as using scissors, coloring, and writing.  The class that he was in last year was mainly focused on developmental activities.  Landon, along with one other child, goes down to the 4 year old class and has circle time and "table time" which is where they do their class work.  The class has one lead teacher, on assistant, and another assistant that is there for Landon and the other student.  Landon's aid is there to help him with task that he needs a little extra support in.  He stays in this class until he is "over it" for the day and then he can go back to the 3 year old class.  This schedule is fine with me because he still has one more year until he starts Kindergarten.  Next year he will be in the 4 year old class full time.  This is just a great opportunity for Landon to continue to grow and develop leaps and bounds.

I need to go and get some housework done but I will try to write about his IEP meeting and the goals we set for him soon.  Also look next week because that is when I am going to start his work at home.  I can't wait to see how he does and how much fun we are going to have together.

Private Speech Therapy

Today was Landon's first official private speech therapy with Ms. Lori. I'm not sure if he was excited but I sure was. I am amazed at what she could get him to do with a little persistence. As you know, I was not overly thrilled with the speech he was/is getting at school. I don't think it is any fault of the therapist, just the way "things are" in the school system. I am very excited about the potential Landon showed today considering I don't feel that he progressed as much as he could have with a little more "push" during the school year. I have VERY high hopes for the months ahead. She has even agreed to allow me to video her sessions with Landon so that Travis and I can look back over it to help us better work with Landon at home.

The first thing we discussed was goals. Ms. Lori has written out a few goals for Landon to get him started. First let me show you the goals that were written in Landon's IEP for last year.

Area of Need: Expressive language
Annual Goal: By August 2010. Landon will increase expressive language skills to be able to communicate effectively , orally or by using signs, in 80% of opportunities in the school setting.

Area of Need: Articulation
Annual Goal: By August 2010, Landon will improve the intelligibility of speech production to be understood in 70% of opportunities presented daily.

These goals sound great and I agreed to them BUT looking back I have a few problems. First, no one really used signs with him. If his speech was not moving along they should have been working on signs in order to meet his expressive language goal. Second, there is no mention of how Landon was going to get from "point A" to "point B". I understand that they can't write all of the short term goals in his IEP but that is why I requested getting update every couple of weeks to let me know what they were working on. How many updates did I get last school year from speech? One, and that was after I wrote a letter requesting an update. Nothing there after. 

Now, compare the IEP goals with the ones that Ms. Lori wrote after meeting Landon only one time for his evaluation.

1. Landon will select activity when presented with a picture choice in a field of up to 6 pictures 100% of opportunities with given a verbal command.
2. Landon will imitate a variety of CV sounds on 9/10 trials with minimal cueing.
3. Landon will produce simple CVC words 9/10 trials in two consecutive sessions without cueing.
4. Landon will use a sign or picture card with verbal approximations 4/5 trials to request an object during two consecutive sessions without cueing.
5. Landon will spontaneously use 5 two word combinations in one session.

Ms. Lori told me that she thought Landon would master #1, #2, & #4 soon but that gave us something to start with. #3 & #5 were the two big goals that she wanted to work on and that she would add more as she met with Landon and sees more of what his need is. I can't wait to show you what she does with him during a session. After only one meeting, she has inspired me to create a "communication board" , which I'll write about a little later, to help give Landon choices and chances to talk and put words together that we know he can say.

Due to Ms. Lori going on vacation and Landon and I taking a trip to K'ville before school starts we will not have another session until the 18th. I can't wait!!

A lesson to learn

This is from Dave Hingsburger's blog.  I read this on a friend's blog and felt that it was a powerful lesson for me.  Something to really think about.

Down Syndrome, Off The Clock

They make, if not the best, a very serviceable eggplant parmigiana. We don't go there often, but when we do, we each always get lunch from the same vendors. As they are at the start of the food court, we grab a table right at the entrance. It's perfect for people watching, eavesdropping and is almost always the source for amusement. The parmigiana comes from the vendor right at the start of the court, Joe gets soup from the vendor next door but one. I grabbed a table just two in, with a chair removed, there is enough room for me to pull in and be out of the way.

We'd just sat down for lunch when we both heard that pronunciation of the word, 'Mother' that communicates so much. 'Muhhhhh-therrrrrr'. I glanced up and saw a frustrated and harried woman, carrying packages from the Bay and her son, a young man with Down Syndrome who was in his pre-teens.

Of course, I listened.

(Realize that I would have listened irregardless of the boy's Down Syndrome. I would have listened if it was a couple having a spat, if it was a businessman mumbling to himself, if it was someone having an animated conversation on a cell phone. That's what I do.)

So, aside, aside, I listened.

It seems that the mother wanted to go with him to get his food and then have him go with her to get her food, then they would eat together. Son, thought this was silly. Why doesn't she get hers, he get his, then they meet for lunch. She did an admirable job of keeping herself calm. I did an admirable job of just listening, not judging. Who knew what kind of experiences she'd had that led to this arrangement? They had been standing arguing and just before she moved again towards the court he said something that had a profound impact on me as a listener and she as a mother.

'Trouble is you think I have Down Syndrome all the time and I don't,' he said with real frustration.

She stopped again, 'What?'

'I only have Down Syndrome sometimes, when I'm learning something new or if the words are real hard. I don't have Down Syndrome the rest of the time when I'm doing what I know how to do.'

'And you don't have Down Syndrome now?' she asked.

'No, I know how to get my lunch, I buy my lunch at school all the time. I don't have someone with me all the time you know.' he was frustrated, he didn't even realize he'd said something of real importance, to me and to his mother.

'So,' she continued looking at him hard, 'you don't feel like you have Down Syndrome all the time.'

'No, most times I don't even think about it,' he said.

She said, her tiredness seemed to be gone, 'Go ahead, we'll find a table after we've got our food.'

They disappeared from view.

Joe and I looked at each other. I said to him, 'That kid should teach classes to parents of kids with Down Syndrome.'

On our way home, chatting about just stuff, I realized that at that moment I didn't feel disabled, it wasn't part of my consciousness. I knew that everyone saw me in my wheelchair but what they saw, what they thought, didn't impact what I felt. I'm only disabled sometimes, when things are out of my reach, when aisles are too narrow, when a curb blocks my way. The rest of the time I'm just - me.