Wednesday, March 27, 2013

Watch out second grade!

We are some of the lucky ones - we had a great IEP meeting last week.  I know it, I give heartfelt thanks everyday that we are lucky enough to have a GREAT educational support system.  For those of you outside the special education community, an IEP - Individualized Education Program - is written for children served by the public school system's special education providers.  So a child with just a speech delay can have one to define their speech therapy services at school or a child like Cate can have one to define their entire day at school.  The IEP sets out specific goals that the teachers are required to work towards.  It also gives them guidance of what accommodations are needed to ensure the child's success.   An IEP is an official document that would travel with a student who moved to another state or school district so it is important it follows specific guidelines and formats. I have friends who dreads their IEP meeting all year long.  They have sat through 3 + hour meetings where every person in the room seems to be working against them.  Like I said we are some of the lucky ones.  Our IEP was truly a collaborative meeting with ideas being exchanged and a helpful document prepared, plus it was only just over an hour long.

The big things that came out of this meeting for us is that next year Cate is heading to SECOND GRADE(!!!!) and that we are continuing her current model of inclusion in the classroom.  Specifically she will be placed in a regular 2nd grade classroom with extra assistance from either a para-professional or a special needs co-teacher during academic units, except for two units where she is pulled out for small group instruction.  Cate has a wonderful para-professional now and hopefully will be able to keep her next year.  A para-profession acts as a teachers aide - not creating or modifying lesson plans but assisting a student or group of students in completing the work.  Co-teaching occurs when a regular education teacher and a special education teacher work together in a single classroom to serve the needs of kids of all levels.  The class all works on the same lesson in a collaborative fashion with the two teacher modifying the work to fit the needs of different learning styles and levels.   A co-teacher is able to figure out what assignments best fit the abilities of the students with special needs to challenge them and teach them the material without causing frustration. 

In Second Grade there is a huge focus on reading so Cate will spend one unit per day in a small group setting outside the classroom, one unit inclusion with a para-pro, and one unit inclusion with a co-teacher.  She loves to read and has recently tested at an early first grade level!  Keeping her reading level as close to on track as possible is super important to us.  We know that if you can't read on grade level then it is next to impossible to be included in not just reading or literature as subjects but also social studies, science, history, even health class.  Fortunately Cate likes to read and assists us in this venture because you know trying to get Cate to do something she doesn't want to do is like trying to get a cat to fetch.  She might do it for the right motivation but you never know exactly what that motivation is or when it will work.

Math is an area where I can see Cate sliding father behind her peers already.  She just doesn't like it and won't memorize it.  Frequently our conversations go like this
me - "Cate what is 7+0?"
Cate -  "9"
me - "no, not 9, Cate think about it, what is 7+0?"
Cate - "9"
me - "Does a number get bigger, smaller or stay the same when you add 0 to it"
Cate - "Stays the Same"
me - "so what is 7+0?
Cate - "4"
me - AHHHHHHHH  - OK that part only happens in my head or at least that is where I try to keep it!

She gets the concepts of addition, subtraction and the number 0 but she rebels against actually learning it.  I know with Cate things tend to come in 'stops and starts' like when she was learning to walk she barely said a single word for months then started spouting phrases one day.  Add to that the fact she hates to be wrong - she get really upset if she tries and fails at something so sometimes she just guesses instead of trying.  I'm hoping that she is taking all the math knowledge in and just waiting for the time when she masters reading a little more and feels more confident about math, then we'll make some big strides.  But who knows for sure!  Because of all of this I was afraid that she would not be able to participate in any general ed classroom math.  I was going to be OK with that even though I hated to add another unit of being pulled out of the classroom.  Her teachers were one step ahead of me there too.  They have recommended one unit of small group and one unit with a co-teacher.  That is the best of both worlds for us - two units of math more geared to her specific level but still only one unit out of the classroom for it.  So both the reading and math outcomes were even better situations then I was hoping for before the meeting.  Her goal in the IEP for both areas are realistic, attainable, measurable and still challenging so we are pleased with them too.

There was some great collaboration in the speech and OT sections of the IEP meeting as well.  Her ST had already written goals that cover our areas of most concern.  She had goals like working on completing a thought and using multiple terms to describe people or objects.   That covers our concern about Cate's meandering speech - where she starts talking about one subject then veers off to a totally different one instead of finishing her thought, so you might start talking about an assembly at school but end up talking about how she wants a bow-n-arrow (thanks to Disney's Merida).  The collaboration came in an area I wasn't even sure ST technically covered.  After a good discussion we added a goal to the IEP to teach Cate coping strategies for situations when a teacher or adult cannot understand her speech.  Cate's speech is good enough right now for this to be an issue because you expect to understand her.  We (and her teachers) understand 90% of what she says but an unfamiliar adult might only get 50% of it, especially if it is out of context.  Whew - especially when she is in story telling mode - darn she talks fast and in a roundabout fashion sometimes!  Her ST is going to work on teaching her to slow down, repeat and/or rephrase when someone doesn't understand her and requests her to say it again.   If she can use some of these strategies maybe we can up that 50% some.  She is even going to do one of the speech units each week in the classroom so she can work more effectively as the situations happen and keep up on exactly where her weakness lie with her teachers and peers.  That covers another thing we know about Cate - she performs differently given the situation she is in, so she might have different issues in ST pullout then in the classroom and hopefully the ST will be able to .  We frequently hear she does something at school regularly that we don't see at all at home.  Her OT also included some classroom support time in her services so she can evaluate if there are any devices, like a slant board or pencil grip - that we need to look in regards to writing and classroom functioning. 

We can't thank Cate's team enough for being so approachable, willing to listen and offering such amazing care and education advice for Cate.  So here's to a successful IEP and WATCH OUT SECOND GRADE here comes CATE!

Thursday, March 21, 2013

Down syndrome is...

Today is World Down syndrome Day - aptly held on 3/21 every year.  I know my title is "Down syndrome is.." but in truth I can't answer that question for you because it is no easier to describe DS in general then it is to describe a group like Americans.  You can probably give me a few general traits if I ask you to describe an American - speaks English (oh except when they are immigrants from another country), lives in the United State of America (oh except for ex-patriots living abroad), believes in democracy (oh except for those that just don't) - every trait you can come up with has some sort of exceptions and the individual will have their own strengths and weaknesses.  The same is true for Down syndrome.  Sure some people with Down syndrome have common physical characteristics or certain delays but you can't tell me anything about an individual just knowing they have Down syndrome.  Some are outgoing - some are shy, some are creative - some follow rigid routines, some are cheerful - some are grouchy, they may all have an extra 21st chromosome but beyond they each person is completely unique.
This is not something I understood 7 years ago, it was a lesson that only Cate could teach me.  She has taught me that no person can be defined by a label.  Even when that label is reality there just isn't enough room on it to write all the important stuff.  So it is a reality that Cate has Down syndrome but Cate is uniquely herself and there is no one else like her. 
Since she can't write this for herself let me tell you who I think Cate is:
Cate is a beautiful seven year old

Cate is a student

Cate is an athlete
Cate is competitive

Cate is a big sister

Cate is adventurous

Cate is creative

Cate is a performer

Cate is a daddy's girl

Cate is her mother's pride and joy

She is the light of our lives because she is unique.  She is loved.

Happy World Down Syndrome Day! 
and Thank you to all of those who work to make sure that all the unique kids like Cate can be seen for the people they are and the potential they embody.

Tuesday, March 19, 2013

Lucy's bday party

It was another weekend full of birthday party but this time one of them was for Lucy!
Here are the pic from Lucy's very successful party!
the foam pit was a huge hit with all the kids

a bouncy girl

ziplining into the foam pit - too fun

dairy free cupcakes by mommy

Happy Birthday Lucy!!!  Your birthday week is finally over!

Monday, March 18, 2013

A life changed

I have known it in my heart for so long but today it is a fact - Cate was the trigger that changed a life.  I wrote more about it a while back in this post.  The basics are that Cate's beloved pre-K teacher Ms Beth was introduced to Reeces's Rainbow when she attended the Buddy Walk as part of Cate's Crusaders.  That introduction got her thinking about adopting a child with special needs and last year she began the journey to find her forever son. 

Ms Beth was instrumental in Cate's successful start at school both with her teaching and her help in advocating with me.  I visited Ms. Beth the day before she left on her trip to deliver a few books to add to his new room.  I was lucky enough to see the pictures she'd been sent of a happy, adorable 6 year old boy just waiting across the ocean for "his turn".

Today it became official as she welcomed "Bobby Guanxiong" into her family. I am overcome with happiness for this family and proud of tiny part Cate played in it.  We are praying that Beth, Taylor and Bobby have a great week getting to know each other and that they have safe trip back home this weekend.  If you'd like to learn more about the journey visit her blog at Faith, Trust & Pixie Dust.

Friday, March 15, 2013

Week in Review

We've had a crazy week - make that I've had a crazy week.  It started off with a birthday party filled weekend for Lucy - two back to back.  She was so excited because the first one was a Cinderella party where she got dress up and to meet the "real" Cinderella!

After that we headed to a very cool bouncy house party that involved some "cosmic" bouncing where the kids got to go into a room with glow in the dark necklaces and bounce in the near dark!  We capped that exciting day off with dinner at my best friends house and a dessert of roasted marshmallows and smores! 
Then we moved on to Sunday which involved another cheerleading competition for Cate.  She did great again and this time was up high in the formations twice!  To top all that off my brother was in town and able to surprise her at the competition - she stayed in game face mode for the performance but afterward had to be picked up and taken off stage because she tried to run and jump off to Lane!  The team placed and they were so excited to get their medals!

So after a long day of cheering & spectating we got home and noticed that Lucy was a little out of sorts.  About 8:00 I took her temp to find it was 100.5 and realized she was getting sick the day before her birthday so the birthday snack I had already made for her to take to school might to have to be saved.   Sure enough she woke up on her birthday Monday with a fever of 101.0.  So instead of being the celebrated birthday girl at school she got to go to work with mommy.  At least she still got to wear her shirt and got a birthday donut for Chris at my office.

Then as an extra special birthday treat we got to make a trip to urgent care as her fever and cough got worse and I started to suspect strep.
After a two hour visit, including a strep test and chest xrays - the diagnosis was a virus.  So we left with no relief and advice to keep up the liquids and get lots of rest.  She took a nap and rallied to have a little home b-day party to celebrate turning 4 with her favorite meal of gnocchi and a dairy free, egg free banana cake.

She had fun and got some great clothes from her great aunts & cousin Kim, a adorable baby doll from Uncle Lane & Aunt Brandie, a coloring book from Cate (which she picked out and bought with her own money) and fun stuff like a Cinderella carriage and figures from mommy & daddy.

Lucy's fever got up to 103 and stuck around until Thursday morning when it finally broke.  Other than the fever and a night time cough she didn't actually feel too bad when the Motrin was on board.  So lucky Lucy spent all week at my office & even got to have Cate come visit at 1:15 every day because it was early release for conference week at school.  So mommy is about to go crazy from all the time together this week while trying to get work done at the same time.  But today there is a new batch of Cocco Krispie birthday treats at school with Lucy so I HOPE we are back to just a normal crazy this weekend with multiple b-day parties (including Lucy's), cheer practice and soccer instead of the insane crazy of the past week!

Thursday, March 7, 2013

Cate's game face

The newest addition to Ric's sports basement - finally got an 8x10 of one of my favorite cheer pictures from Cate's competition.  We call it her "game face" picture!  (sorry for the glare - I'd already framed it before I thought to take a pic)

Wednesday, March 6, 2013

Worth my discomfort

This same day last year I wrote this post that explains my feeling on the word "retarded" and why I would give almost anything to erase it from today's vocabulary.  Today is the 5th annual "Spread the Word to End the Word" awareness day. 

My feelings haven't changed one bit from that post one year ago but my resolved has increased.  Ann Coulter used it in reference to the president then defended herself saying that it was OK.  Multiple sports stars have used it in interviews although some have since apologized since.   This is still a fight that needs to be fought.  These days I am not afraid to post comments on facebook, to call out friends and strangers alike in public.  It is worth the minutes of both of our discomfort if that person thinks twice before they say something that not only hurts me but might hurt another listener or reader.  I have sent letters to authors who probably never read them about the use of it in their books, I refuse to see movies like "Ted" that I know use it.  I don't care what people think of that - I don't care if they call me names or think I'm taking it too personally.  Because it is personal to a lot of people who won't tell you.  They suffer discomfort all the time whether they are at school or the movie or the mall.  Those people who say the r-word regularly have a million excuses on why it is OK, why I shouldn't care, how "they don't mean my daughter".  But all those excuses are irrelevant because there are ambassadors for special needs of all types not just Down Syndrome, that have made public their reasons for being hurt by the use of the word in any context.  It is an issue of respect, period.
If you need more evidence check out this great post about it by a father - A Simple Matter of Words or visit to see the stories of people with disabilities and their very valid feelings on the subject. 

Join me in continuing to feel a couple minutes of discomfort and call someone out when they use the word "retard" or "retarded".   I really do believe that the majority of people who say it just dont' realize how hurtful it is to this population.  Like the mission I think that this is more a matter of education than a banning of a word.  Anyone can still say that horrible word while looking at this face and knowing she will be hurt by it one day then they are not a person I want to know.
And for Cate and her friends -  PLEASE PLEASE PLEASE teach your children and grandchildren why it isn't OK to use it.   

Friday, March 1, 2013

"how do you do it?"/ thoughts mommy guilt

Yesterday I posted a link to the spelling blog on the BabyCenter DS Message board just in case anyone might be looking for new ideas.  One of the responses was this:

".. starts kindergarten next year and I am terrified about how I am going to manage homework with her. I work until 5pm, pick up her brother from daycare and get home around 6pm. They both eat dinner, have baths and then go to bed. I see that you work full time too. How do you manage?"

My answer to the base of her question about homework specifically is easy - Routine & Creativity. Homework for Cate requires both disciple and flexibility.  We have a dedicated desk in the kitchen and we try to start homework very soon after arriving home for the day.  Cate knows when I sit her down at that desk she isn't getting up until her homework is done.  Of course that doesn't mean she always cooperates but at least it is her routine so I can bring her around most of the time.  The creativity comes in when homework starts to drag.  In kindergarten I tried to do every assignment the teacher sent home in the way it was intended.  This year I've learned the important thing is to learn the material and if I need to modify that homework to get there then I need to get with the teacher and do it.  Like yesterday's example - Cate isn't going to learn spelling words by writing sentences, that is a fact - the process is just to hard.  Most kids probably get a lot out of that activity but it isn't a great one for Cate so we modified one night to play with letters.  If homework takes too long then it is not going to be valuable.  I don't envy the commenter's situation.  I work 6:30 - 3:00 pm because I was barely surviving in my previous job which was 9-5.  I am much better at using those two hours in the afternoon then I was figuring out how to get it done in the morning or to share responsiblities like when I was barely getting home in time to make dinner.

Before I actually wrote that reply, I started one that was very different and then decided it might need a little more thought.  My initial answer to "how do you manage" was going to be "not very well".  But as I started to write I realized that it really depends on who's definition of "manage" you use.  A couple of my favorite bloggers have touched on "mommy guilt" lately so I've had this concept on my mind a lot which is probably the only reason I caught myself from submitting my negative answer.  Many days I don't feel like I manage thing well.  Our house is usually a mess - last night there was a pile on the kitchen counter containing Lucy's valentine art work so it is at least a week old, the playroom was a complete disaster (as in can't see the floor), there is laundry overflowing the hampers in both ours & the kids bathrooms, and there are two still packed suitcases in my closet.  Not only is my house not up to "standards", I have been failing on cooking lately too.  I was super proud of myself last night because I actually made the girls mashed potatoes and feed them rotisserie chicken - that was as close to actual cooking during the week as I've come in a while.  We have had way too much fast food or pre-prepped food lately.    That just hits the physical stuff, Lucy hasn't been sleeping well so I in turn am not sleeping well which makes me tired and grouchy by 7 pm when I've been up since 5:45.  I feel like I've been yelling at the girls too much and not teaching them how to be patient and to control their anger.  Lucy has started stomping her foot at me when I tell her "no" to something she really wants and I know its my fault.  Put all these things together and it adds up to pure mommy guilt. 

All of this is the reason that I love reading posts by blogging moms.  Just as I pile all this responsibility on myself to do things perfectly like a 60's TV mom, I read a post like Deanna's Failure on her "Everything and Nothing from Essex" blog or one of my other daily visits. Somehow learning it is not just me, gives me the perspective to reminds myself of the good things I did this recently.  I might have given them too much fast food & salt filled pre-prepped food but they have both had a healthy packed lunch pretty much every day this year.  We have a good homework routine and I'm learning how to make the best of our time more each year.  Cate has done her homework every night and is showing great improvement in her reading.   Cate is on track to promote to second grade and I believe she will continue with her typical peers next year with maybe one more pullout unit (IEP end of this month so we'll see for sure then).  Lucy has a birthday party coming up for which I've already reserved the spot and have the goodie bag & decor in hand.  Lucy even made a birthday card for her teacher today on her actual b-day.  Both girls have made it to every therapy appointment, swim class, and cheerleading practice/event so far this year.  And along those lines both of their swimming has improved and Cate is doing great in cheerleading.  They are both perfect in weight and are overall very healthy.  All of those things on their own seem little next to the messes that linger and the perceived failures along the way but as all you moms know nothing happens without a lot of planning and strategy.  I know I have give myself a break but the problem is finding my way out from under the stress to put it all in perspective. 
As I commented on Deanna's - "Half the time I don't even see the guilt starting to push me into stupid things like cleaning the laundry room at 10 pm or working out at 9:45 when there are still lunches to make & school bags to pack. I feel this huge urge to "catch up" and stop thinking of my own sanity until my husband make me stop. That normal causes me to snap at him when he is only trying to help, which makes me feel a different kind of guilt that eventually brings me back to the real world. The one where the laundry can wait as long as there is one clean outfit for each of us tomorrow and the kitchen counter won't collapse under the mess until I have to clean in over the weekend." 

Don't you just wish that we could forget the guilt in the first place and not have to remind ourselves that sometimes doing the best you can is success in itself?
And if I need to convince myself that I'm doing alright as a mom,  I should just look at this picture -
My girls loving each other enough to cuddle on a rainy night means more than a clean house any day.