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.

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!!

Fell into the trap

I can't believe that it has been so long since I have written. So much has been going on and I have been trying to think of a way that I can use this wonderful tool to be more than just fun for my family and friends. Over that past several months I have come across many blogs that have been so helpful to me while I continue to figure out ways to help me be the best mommy for Landon that I can be. I have always felt that it is my duty to encourage and push Landon to do all that he can, to expose him to everything that every other 3 year old would see and do, and love him no matter what.

School was great for him this year and he loved going but I feel that I really let him down by not continuing to work with him as much as I use to. I think I fell into the trap of thinking that he was going to school therefore he was learning everything he needed. That is not to say that we didn't work with him, but I wasn't as consistent as I had been. When the school year was over and I looked back at where he was and where he is now, I saw things that made me happy and things that made me sad.

The things that made me happy: (1) Landon loved his teachers and I think they loved him too. (2) He worked hard on his physical, and occupational therapy goals. He really made some great progress in these area. (2) He made some friends. Each time I said something about school he would say, "Aidan", which was a little boy in his class. (3) He became more of a participant instead of a observer.
The things that made me sad: (1) Landon's speech did not go as I thought it should have. That is nothing against anyone, just that I think he needs more one-on-one. So....to fix this we are working on getting private speech for him. (2) His sight word's have not been worked on therefore he is starting to lose them and is not gaining any new ones. (3) He didn't really improve on math skills such as counting or identifying numbers (4) He still doesn't know his colors very well.

Now why am I saying all of this? It's not because I think the school didn't their job.....It's that I don't think I did mine. I shouldn't depend on the school to teach Landon what I know I can teach him, not at this point at least. When he gets into Kindergarten I will expect more but right now the schools main job, in my opinion, is to work on how to play with others, physical therapy, occupational therapy, and speech therapy. The therapy time he gets at school is not enough so I do need the therapist to work with me on what to do at home so that he can continue to improve and for the most part most of them did well with keeping me up on what they were working on.

I have said all of that to say this....My lack of "teaching" is going to change. During the past couple of months I have been working on a list of goals that I want Landon and I to work on. I am in the process of creating my own "curriculum" , for a lack of a better word. I hope to use this blog to help other parents see what their child CAN do. I have found that if you make the right labels, when parents are looking for ideas blogs will come up on their search. We will see how this goes.

He are the goals I have written so far for Landon. These goals will and should change as we work. This list is just a start. As I do more research I will add to this list. He is already close to reaching some of the goals already such as putting his pants on. That goes to show you that with just a little work Landon can reach the stars!!

Landon's Goals 2010-2011

Math

• count 1-10
• identify numerals 1-10
• count groups of items 1-5
• identify shapes: circle, square, triangle, heart, star, rectangle, diamond
• identify colors: red, blue, green, yellow, orange, purple, pink, white, black, brown
• order shapes by size: large to small; small to large

Reading

• read number words 1-10
• read color words
• read shape words
• read basic word families (-at, -ar, -ig, etc.)
• read short simple sentences (3-4 words)
• capital/lowercase match

Language-Verbal

• yes
• no
• please
• out
• help
• on
• drink
• one-ten
• A-Z

• two word phrases
• repeat words
• attempt to say words when reading

Language-Receptive

• big/little
• on/under
• in front/behind
• on/off
• right/left
• first/middle/last
• sequencing

Fine Motor-clothing

• take pants off
• put pants on
• put shirt on
• take shirt off

• put socks on
• take off shoes
• put jacket on (flip method)
• button large buttons

Fine Motor

· snip paper

· lacing cards

· work large floor puzzles (with assistance)

· open jar lid

· turn key in lock

Fine Motor-Prewriting

• draw horizontal lines
• draw vertical lines
• draw "circle"
• trace lines

Home Life

• put bag in trash can and put can under sink (with supervision)
• put plates, cups, and silverware on table for dinner
• pick up toys
• pour liquid from pitcher to cup
• follow "schedule" chart