Sweet Pea's first trip to the Special Olympics

Today we were able to make it to the So Cal Special Olympics Summer Games in Long Beach.  It was amazing!  We will be going back next year...and the year after...and the year after...

The girls were pretty well behaved and the main reason we went was to check out the Young Athletes Program that they were having a demo of.  I've heard about this program for a little while now through my blog friends at "Love for Colin".  I was excited to see it in action for ourselves!  The program is just starting to roll out here in Southern California and I'm hoping that it comes to a city near us soon.  It was awesome to watch the school kids running the obstacle course and having an absolute blast!  They even let Sweet Pea run it after the demo was mainly completed.  She had a great time going through it and her first time was her best, but of course we didn't have the camera out.  She did amazing jumping from circle to circle and I can't wait to share the video with her PT at school. (BTW, she is LOVING her preschool and is doing wonderful)

And Mommy proved, yet again, what a pop culture void I am...I was standing right next to Johnny Knoxville for quite a while...and easily could have actually spoken to him since he was waiting for someone to return...but had NO idea who he was.  Daddy was laughing at me and he wished that we had gotten a picture of Sweet Pea with Johnny, but c'est la vie.

Here is a video of Sweet Pea running the obstacle course.  You will see Johnny Knoxville cheering her on as she is supposed to crawl under something...instead she just ducks a little.  The downside of being small...you can thwart PT plans...but I think she sees that as a benefit.



And a couple of photos from the day...




Angel was there too and had a great time.  Sorry, she didn't make it into the very few photos that we took.

IEP Part 2

I forgot to mention a few other things in my last post.

First, I don't put a lot of weight on this, but it still makes me very happy and we will just see what comes of it...Sweet Pea did not qualify under Intellectual Disability (ID).  Her cognitive testing scored too high because she has splinter skills.  She can't do all the base level skills, but she can do some that at her age level.  The district was surprised that she didn't qualify under ID and had to research what to put her under because they knew that she still qualified.  After speaking with a few other districts and people they landed on "Medically Established Condition".  It is my understanding that this is an option until age 5 or so and at that time they would have to do the testing all over again to see if she was now ID or if they would have to put her under Speech & Language Disorder.  It was explained that she would still receive all the same services if they put her under S&L Disorder, but that seems a little odd to me, but it could very well be true.  We will cross that bridge when we get there.  It was wonderful to know that at this point she wasn't qualifying under ID and we will see what the future brings.  I personally like this because I think that people will have higher expectations for her without the ID label.  I know that it shouldn't be that way, but...

Second...I created two video slideshows at the very last minute because I hadn't prepared a nice document that went over our goals and aspirations for Sweet Pea so I thought a real brief slideshow would be better than nothing.  Here is the video:


And finally...this is a video slideshow that I created to help lighten the mood if indeed we were going to have to fight for Sweet Pea to get into the afternoon class.  I figured that we would all be tired by the end of the meeting when it was going to come up so this would help break up the monotony of the meeting and hopefully make the team smile...in addition to seeing why she needed to be in the AM class.  Enjoy the video here:


I've picked up the IEP from the district and now I have to read it over with a fine tooth comb to make sure it accurately reflects what we agreed upon yesterday.  Fun times!

First Ever IEP

Sorry that I have been MIA...again!  This time it is because I've been prepping for Sweet Pea's first ever IEP, some family stuff that is taking up a good chunk of time and just loving on these two cuties since Daddy is working a ton of hours.  I'm so exhausted by the end of the day that a blog post just isn't in the cards.

Anyway...the purpose of today's post is to let you all know how it went.  The backstory is that Sweet Pea has received all her services from the Regional Center in our area.  However, that ends on her third birthday.  She will start to receive almost all of her services via our local school district come her third birthday.  We transition from an IFSP with Regional Center to an IPP with Regional Center and an IEP with our school district.  We had 8 different appointments for assessments over the past few weeks in preparation for the IEP meeting today.  Sweet Pea was assessed in PT, OT, Adaptive PE, Speech, Psychology, and Special Ed and a few of those had to meet her two or three times...only one was because Sweet Pea was uncooperative when she had a major ear infection and was not herself at all.  It was interesting to watch the assessments and see how Sweet Pea reacted to each specialist.  I am very happy that Sweet Pea clicked with all but one superbly!  The one that she didn't totally sync with was still good so we will have an amazing team working with Sweet Pea come her birthday.

I asked for the reports last Monday so that I had a week to review them myself and also to go over them with her therapists to ensure that they were in line with what they had seen over the past many months.  I worked with the specialists to make a few tweaks to the reports and goals during the past week so when we walked into the IEP today we weren't going to have to spend hours on that part.  It was wonderful that way because the meeting still took an hour and a half!

Let me back up a minute...in my conversations with the Inclusion Specialist at the district preschool she has been telling me for a couple of months that there wasn't an opening in the morning classes so Sweet Pea would have to attend the 12pm - 3pm class.  Considering she naps from 12-2 every day...that was not an option for us.  I did lots of research to find articles that show that kids with DS have poor sleep quality and quantity.  I needed to be prepared to fight this as an afternoon class was not appropriate for her and she is legally required to receive a Free and Appropriate Public Education (FAPE).  I had a good relationship with the district and I didn't want to start off with a big disagreement and a battle, but I needed to do what was necessary for Sweet Pea.

Back to today...Daddy, Grandma and I attended the meeting and sat around a table with 10 other people...that's right...there were 13 of us in this meeting!  I can see why people are often intimidated!  We were lucky that 2 of the 10 others were people that were currently supporting Sweet Pea via the Early Start program with Regional Center so it was 5 vs 8, but still!  We brought some loaf cake for all to enjoy and we settled in for a long meeting.

Not 10 minutes into the meeting the Inclusion Specialist said, "Before we go any farther, I want to let you know...an opening just came up for the AM class.  She can start on her birthday!"  Grandma and I both had to fight back tears of joy, but our eyes definitely watered up!  I was so fearing the fight that I was sure we were going to have, that this news...at the beginning of the IEP...just made me feel 20 pounds lighter.  She said it wasn't confirmed until this morning and the way they said it almost made it sound like they had to make it happen...but whatever they did...they made it happen!  It makes me feel so good that they listened to our needs and concerns and found a way to make it work.  So many people have to fight with the district for every service and we are so blessed that we didn't have to fight for a thing.  Once that was out of the way the entire flow of the meeting was more relaxed.  We got to meet her new teacher for a few minutes and then we went through all the various goals and services.  Each week she is going to be receiving:

• 5 days of full inclusion preschool for 3 hours a day
• 1 30min session of individual specialized academic instruction in the learning center
• 2 30min sessions of group specialized academic instruction in the general education classroom
• 3 30min sessions of small group speech (one of which will be before preschool starts so she isn't missing as much time from the classroom)
• 1 30min session of individual occupational therapy
• 1 30min session of group occupational therapy
• 2 20min sessions of group adaptive physical education
• 2 30min sessions of individual physical therapy

It's a lot of services and we are a little concerned about how much time she will be missing from her class, but we will see how it goes for this school year and then re-evaluate for the fall if we need to.  The nice thing is that this is now considered her "stay put" so if we run into issues at a later point we have this to fall back on.

Needless to say, Daddy, Grandma and I walked out of there extremely happy that we didn't have to fight on the AM class and that everything else was as simple as it was.  I highly recommend asking for all reports (draft is okay) 5 work days prior to the IEP so that you have time to review them yourself and with your current therapists.  It really made the meeting so much more streamlined and unemotional.  IEPs are based on your child's deficits so that is what the majority of the reports are speaking to.  Having to sit there and listen to an hour of all the things Sweet Pea can't do would have been beyond torturous to me.  With that out of the way we were able to focus on the goals and what we wanted her to achieve in the next 12 months.  That is a very positive task and I really enjoy hearing what is coming for her.

I haven't signed the IEP as I want to have a day or two to review the final IEP.  They were making a few minor changes as we went through the meeting so I'll pick up an updated version of it tomorrow and hopefully have it back to them by Wednesday or Thursday.  Sweet Pea will be starting at the preschool on her birthday so I need to decide what treat she will bring into the classroom to celebrate with all her new classmates.  Sugar will certainly get things off on the right foot with her classmates!  I can't wait for her to start making friends and hopefully having playdates.  We have spent so much time in therapy the past 3 years that we haven't had a whole lot of time available for playdates.  This new configuration will help with that and I really am excited to get started. We have a great team working with her now and it will be very sad to say goodbye to them, but I know we are going into new good hands and I hope that it won't really be goodbye.

Now I'm going to enjoy my glass of wine and celebrate that Sweet Pea is in a great district with an amazing team and we are very lucky indeed.  Cheers!

Happy 13 Month Birthday Angel

Hard to believe that she is 13 months already, but people keep telling me that the calendar doesn't lie.  I'm still not convinced, but I can't find proof to back up my story so I guess I need to just concede.

Whoops!  Something tells me this is not exactly what she had intended when she climbed in there.

A quick update of what she has been up to this past month would include talking up a storm and then some.  The word count has grown at least four fold as she mimics absolutely everything and knows the names of quite a few relatively random things...boots, jacket, tray, etc.  The funniest still is her saying potty all the time.  She even pulled the potty seat out of the bathroom and brought it into the family room and sat down on it.  I'm hoping that this fascination holds for another year and I can potty train her quickly.  A girl can dream right?!?

Angel is also picking up a lot of sign language.  She doesn't like to watch Signing Time, but is in the same room as it some and watches a little bit before she gets bored.  I think the rest of it she is just picking up from us as we use it with Sweet Pea still all the time.  I'm always amazed at how easily Angel learns things!  Maybe one day I won't be, but that day certainly hasn't come yet.  Sweet Pea works so darn hard for every new word, sign, skill, etc and Angel just breezes through.  It's wonderful to watch, but a little sad at times too.

Daddy and daughters Signing Time time:

Probably the biggest news is that and as of today we think we should call her an official walker.  She has been walking a few feet for a while, but she still preferred to crawl if she really wanted to get somewhere.  Now she tries to walk far more than she crawls.  I don't know if the nice weather this week helped because I was able to put her in shorts and crawling in shorts hurts a lot more, but either way...she is really walking now.  Her stability is lacking, but she looks darn cute when she loses her balance, tries to catch herself and then falls back on her bottom.  She even says "whoa" sometimes when she does it.  Too cute...but I know that I am biased.

Oh, and she also got her two bottom molars this week and is working on at least one other tooth currently.  She looks so different with those two big molars making the back of her mouth white.  I got used to the 6 teeth that she had since she has had those since she was 8 months old.  Nothing new for almost 5 months until these new molars.  Updated 2/27/12 to include that she broke through her top 2 molars as well.  4 molars in one week...no wonder it's been a hard week.

Here are a few more photos:
We have a drama queen on our hands!  Check out this sequence...

We had to move the base to her car seat out of Daddy's car for some trips to the mulch yard and she made herself at home in it.

Long video of Angel getting her groove on with her sister:



Another long video of Angel walking, talking and then getting beat up by Kodi:

Tools for the Journey Conference

I attended an AMAZING conference today...Tools for the Journey...that was put on by Club 21, who is a wonderful non-profit organization that's focus is on inclusion...both education based and societal.  I attended this conference in 2010 and while I learned a lot, it was WAY too overwhelming hearing so much about inclusion in education and the trials and tribulations associated with it.  Sweet Pea was less than 1 years old and I was not ready to handle the education phase of this journey.

Today was NOTHING like that day in 2010.  I learned, I laughed, I teared up a couple of times but never real tears, I loved and ultimately, I embraced this next phase.  I have attended a lot of IEP trainings and have prepared for that part of the process, but the inclusion part has still eluded me to a large extent.  I learned so much today that I feel much more equipped to help setup a productive inclusive environment for Sweet Pea when she transitions to the school district in 2 months and this little girl definitely deserves that!

For those that don't know, we have been receiving early intervention services through the state run agencies called Regional Centers and on the 3rd birthday most of Sweet Pea's services transfer from the Regional Centers to our local school district.  The Regional Center will still be involved with Sweet Pea, but not to the extent that they have been since she was born.  It means that there is a new system to learn.  It also means that she will lose all of her existing therapists and center based therapy program.  However, if our IEP meeting goes as we hope it does, she will gain a spot in a preschool that is highly regarded by parents of typical children and that fills up very quickly.  She will be in a class that has a good number of typical peers in addition to a few classmates that also have IEPs.  I don't know the ratio, but there are definitely more typical peers than special needs peers in each class.  She will receive services such as speech and occupational therapy through this school as well.  All of the details of what kind and how much therapy and what days/times she attends the class will be decided at the IEP meeting that we are having on March 19th.

Anyway...back to the point of this blog post...

The conference hosted Patti McVay who is the Director of Education at the Linda Crnic Institute.  For those of you in Colorado...I am SO jealous that you have such an amazing resource in your toolkit!  I feel very fortunate and thankful that Club 21 was able to bring her out for this conference so that we could get a tiny fraction of the information and knowledge that she has to share.  Her presentation was titled "Best Practices for Student Success" and here are a few of the top things that I learned:

• Teacher ownership is important: If your child has a para educator, DON'T ask the para educator about your child's day.  Ask the teacher!  This forces the teacher to take ownership of your child.  Say hi to the para educator, but focus on the teacher.  
• Make friends with the teacher:  For too many reasons to name.  Offer to volunteer during class, after class, work on stuff at home...anything to help her and to let her know that you care.
• Related to this is that she prefers para educators to be called classroom assistants...and to act as such!  She doesn't want them to be a single or two children's shadow.
• Ask General Education teacher to share what is working during the IEP: This gets the general education teacher involved in the IEP and shifts the focus to what your child can do.
• Brainstorm with classmates to have them come up with your child's strengths so that they can be read at the IEP.  This also helps change the dynamic of the IEP.
• Always bring a friend to the IEP:  Spouse is good, but also bring a friend.  It's another set of ears and eyes that can help with note taking and can be less emotionally attached.  An idea suggested by the audience was to have that person sit across from you instead of next to you so that between the two/three of you, you can see everyone's faces and body language.
• Create a communication starter:  Could be a couple of pictures of what your child did over the weekend.  Example: Photo of child at zoo with "We went to the zoo" written under it.  This allows peers and others to start conversations with your child when they can't do it themselves...as is often a concern for our kids.
• Use visual supports:  I don't know why I fight this one so hard.  Patti had a great point...we as adults use visuals too.  My calendar!  It may not be pictures, but visuals don't have to be either.  Yes, they start as pictures, but as your child learns you can transition to writing and other types, but keep visuals as a part of their life.  It helps them focus on what is important.
• Two goals that she recommends are on most IEPs:
• Ask a peer for help before an adult
• Complete a project with a typical peer once a week
• We have to setup situations where our children can be the helpers and not always the helpees.  Example: Our children can help with a class that is a couple of years younger at times.
• She recommended this article: "Be Careful What You Wish For..."  Five Reasons to be Concerned About the Assignment of Indivdual Paraprofessionals by Michael F. Giangreco, et el.   I was already nervous about paraprofessionals being assigned to Sweet Pea and I'm happy that our preschool doesn't do that...supposedly.  We will see what reality is as we move through the process.  Para educators should be used as FACILITATORS for students.  A para educators should ask:
• What would I do with any other student?
• Can a peer do what I am doing?
• People first language: I'm horrible at asking people to use people first language (child with Down syndrome instead of Down syndrome child), but she said it in a way that I think I will even be able to use in the future.  She asked us all to think of one trait that we dislike about ourselves.  Then she asked us how we would like us if we were introduced by that.  She is a little overweight (by her own admission) and she asked how we thinks she would feel if she was introduced as "fat Patti".  That was a great way of explaining it.  We don't want our kids to be introduced and spoken about with Down syndrome being who they are.  Sweet Pea is MANY things...having Down syndrome is just one of them.

As you can see...I learned a lot!  What I wrote above is just a piece of it.  I hope that this information is useful to someone else out there.  I am so happy that I was able to attend today and I can't wait for next years conference!

Happy 1 Year Birthday Angel

Angel is 1 year old today!  Really?!?  How can that possibly be?  My sweet little baby girl is growing up so fast and I feel like I’ve forgotten so much already.  I’ve been so busy with the two girls that my blogging has taken a back seat for many months and unfortunately that is how I capture most of my memories and so I’ve missed them.  I’ll try to capture some of what Angel is doing currently, but it changes so fast that I can’t keep up.

Language:

After spending a few weeks or more likely it was a couple of months FREAKING out about her lack of speech…and I mean absolute, complete lack…we now have a motor mouth on our hands.  This little girl talks and talks and talks and I have hardly any idea what she is saying, but she is saying a lot!  She has quite a few words that I can understand and she mimics a lot of words too.  Here is a partial list of the words she says currently: hi, shoes, bye, ball, dog, outside, down, Elmo, milk, more, o (Cheerios), push, all done (which she says in the sweetest little voice that melts Mommy’s heart) and probably more that I can't think of since we haven't been writing them down. And she signs more, milk, all done, ball and potty which clearly means we have spent WAY too much time taking Sweet Pea to the potty.  And yes, Mammy and Daddy are missing from this list…eventually I’ll hear those sweet words I’m sure.

Here is a little video of her saying "all done":

And here is one of her saying "outside":



Eating:

Angel is still a champion eater although she is getting pickier with time.  She definitely prefers table foods over baby food.  Banana might be her all time favorite food right now, but that is only because she hasn’t had her cake yet.  I’m sure she will go crazy for that tonight!  Her other favorite foods are Cheerios, Goldfish, and avocado…but not guacamole.

Walking:

She has ZERO interest in walking.  She crawls super fast and she often pants like a dog as she is crawling which makes us crack up.  She can walk with a fair amount of wobble holding onto one hand.  She will sometimes take two steps by herself to get to something.  That something is most certainly not Mom, Dad, Sweet Pea or Grandma!  Oh no…we are not nearly enough motivation.  A puppet however is!  She has a nickname that starts with Silly ____ for a reason.  She also doesn’t have any interest in walking with walkers.  We stand her up at the handle and she holds onto them and walks around to the side or front of them to play with whatever is there.  Oh well…she will certainly walk when she is ready and I’m sure I’ll regret ever teaching her at all!

Here is a video of her trying to leave our house and then showing off her walker skills:

Climbing:

She is definitely a climber.  She used Sweet Pea’s lap desk the other day to climb onto the couch.  On Tuesday I left her alone at NAPA Center while I washed out a dish and I came back to find her on top of the therapy staircase (it’s only a couple steps up so it wasn’t as bad as it sounds).  She wasn’t even in the vicinity of that staircase when I left!  At Sweet Pea’s other therapy locations Angel is always climbing into the chairs.  I think she wants to participate in the therapy since she always sees her sister doing it.  She did join in at Sweet Pea’s center based therapy program last week for a short bit and it was cute to watch her sitting at the table with the other kids.  

Games/Songs:

Angel enjoys the itsy bitsy spider and twinkle twinkle, but doesn’t do the hand motions yet.  She plays peekaboo all the time.  She pretends to be bashful around people and gives them her cutest smile and then turns her head away.  Angel doesn’t really have any favorite toys…except for whatever her sister is playing with and also whatever she can carry in her mouth as she crawls around…which contributes to her looking like a dog in addition to sounding like one (maybe she is spending too much time with Kodi).

And one last video of her enjoying her penguin punching bag:

Teeth:
She still has the same 6 teeth that she had by the time she was 8 months old.  Don’t think anything is coming in soon either, but who knows.

Sleep:

She takes two naps a day on most days.  The naps can go anywhere from 20 minutes (oh how I hate those) to 2 hours (heaven!), but typically are in the area of 45 minutes.  Her ability to sleep through the night fluctuates greatly…some weeks are good…others not so much.  She seems to require crying to fall asleep and that is not a characteristic that I hope stays, especially since she shares a room with her sister. 

Angelisms:

• She has the most precious laugh. 
• She sounds like Donald Duck when she talks sometimes and other times she has the sweetest, softest voice ever and still other times she is the loudest girl in the entire world.  So many voices from one little girl.
• She loves to recline.  She tries to lay back on people all the time.  I don’t know if she learned it from Kodi or if it was all her doing, but it’s cute.
• Angel LOVES bath time!  She comes into the bathroom as soon as she hears the water running.
• Her favorite person in the world is still Sweet Pea.  She squeals with delight when she sees her sister coming toward her to play.
• I didn’t mean for this to be a pattern, but she is like Kodi in yet another way.  She runs her head into EVERYTHING.  She has no concept of where her noggin is in relation to the rest of the world.  She has had numerous bruises on her forehead and even a 3/4 inch scratch all from running into things or falling over.  She is extremely tough which shouldn’t surprise me since she had to put up with abuse from her older sister from a very, very early age.

Bottom line is that we love Angel with all our hearts and we can't imagine life without her.  This first year has been wonderful and I just know that this next year is going to be even better. 

Happy Birthday!!!!!

Wordless Wednesday: Zainy Hair