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 http://www.r-word.org/ 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 r-word.org 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.   

"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.

Finding a new strategy for spelling practice

As I have mentioned before, Cate's first grade class has spelling tests each week.  Her class is given 10 spelling words on Monday, homework related to those words each night (Monday - write each spelling word 3 times, Tuesday & Weds - write sentences using half spelling words, Thursday study for test), then a test on Friday.  The modification for Cate in spelling is that she gets only 5 of the words, she does the same homework using only her words, then has a one-on-one test on Friday.   Her spelling grade was a 84% for the last academic quarter - not too bad especially since the words are getting harder, not the 3 letter ones we started off with in the beginning of the school year! Spelling was going pretty smoothly in the months before the holiday break when our routine looked like this:

Friday - teacher emails me the words
Saturday - I make flash cards and velcro them on the wall by her desk.  We work on learning to read the words she doesn't already know.  I usually make the cards the same color if there is a similarity like they all end in the same letters or have the same vowel combination so I can ask her what is the same on all the "orange words" and we can also work on finding patterns.
Sunday -  read each word then write the word 3 times on her dry erase board.  The dry erase board is easier for her to write on since there is less resistance and since this is an "extra" practice day I try to make it as low impact as possible.
Monday - write each word 5 times on homework
Tuesday - write 5 sentences, one for each word on homework
Wednesday - write a different sentences for each word on homework
Thursday - practice spelling test, she writes any words she misses 3 times on the dry erase board
Friday - daddy quizzes her in the car on the way to school

Like I said that was working for us until after the break.  After the holiday break she really started rebelling on writing sentences for the second time and I can't blame her because she has already done a full day of school and an hour of private speech on Wednesday night. I feel Cate can compose sentences for her spelling words very well for her age.  I say she does so pretty much independently, probably 85% of the time.  For example recently she had "nice" as a word and her sentence was "My sister is nice.", on Tuesday for "fly" and she said "I fly with my bee.".  Of course once in a while a word throws her like yesterday her sentence for "by" was "I want to by a dress.".  But she takes correction on that type of thing pretty well and usually won't make the same mistake the next day.  It is more a problem of fine motor & motor planning skills - the spacing, writing multiple words, spelling the other words, and remembering her composition are all tough and time consuming for Cate.  But given her challenge in learning her words I can't just give her a night off if we want to her to get good grade on the spelling test. Fortunately for us her teacher is very understanding and willing to allow me to make modification when it comes to homework on nights she has therapy. 

Finally after weeks of fighting it, I realized we just needed a new spelling practice routine.  I left the rest of the nights the same but took an idea from another mom to make on spelling practice more of a game on Wednesday nights. I take wooden letters (enough to make all 5 words if I have the capacity) and put them scrambled up on her desk. 

this night we used magnetic letters since every word had repeating letters it was less letter on the board

The first time I leave the flash cards on the wall in front of her desk and she searches through the letters and creates the word on the desk, then write it on her homework paper. 

 

 

Then I take the cards down, put out fewer letters (if we'd been using more then the night in the pictures - the teacher took it easy on us the first week after winter break), then read her the words and see if she can remember how to spell them.  She may not get them all but we celebrate with a little chair dance every time she does get it right and she loves that! 

The manipulative and game qualities of this work make her much more compliant in the process while still helping her learn the spelling.  This simple strategy change has not only reduced our homework time, Cate has gotten 100% of each of the three tests since we started it!!!  I'm sure this won't last forever (although the number/bean game from the beginning of the year is still a favorite) but with Cate it is all about being creative within the routine when things get rough.

An Amazing Weekend for my Cheerleader

Anyone who talked to me last week probably heard me whine about the upcoming cheer competition.  I admit I was dreading it - a huge crowd (100,000 participants in a 3 MILLION square foot venue), a meeting time of 8 am downtown and an expected release time of 2 pm - all for a 2 minute 44 second performance each of the two days - so basically I was giving up my weekend for Cate's cheerleading.  Poor Me???  I kept thinking - why do all these parents travel across the country and give up their time for their kids sports, I just didn't get it.

So come Saturday morning I roused Cate out of bed earlier than she normally gets up for school and got her dressed in her cheerleading uniform.  We made the long trek into the city, found a parking spot then ventured through the cold wind into another world known as Cheersport.  This competition put on by Cheersport is touted as the worlds largest National Cheerleading & Dance Championship with over 900 teams competing from all over the country.  Just walking in the door was overwhelming - young girls of all ages, everywhere, in all varieties of uniforms but all made up with perfect hair.  It took us over 30 minutes to get from the door closest to our parking lot to the group meeting spot.  I would have been worried Cate wouldn't make the trek but she so distracted by looking at all the girls I don't think she even noticed the length of the walk.  Once we found out team, we waited for quite a while as I attempted to put make up on Cate - she was compliant but anyone who knows me will agree it is not a skill I use very often. 

Cate & her Buddy Megan

Even though the moms had forewarned me I was still not ready when Cate went off without me.  I had been drilling the "big rule" for the previous 24 hours since I learned that parents were not allowed in the warm up area - "do no leave Megan for any reason".  I'll be I'd said it 50 times and we'd gotten to the point where Cate was sighing and saying "mommy it is in my brain", whenever I asked her to verbalize it again.  It worked though - she didn't get lost and as far as I know Megan didn't spend too much time chasing her!

 

So as anxious as it made me, off went my not-so-little girl.  For the next hour and a half, I had no view of her as she and her team practiced in the warm up area.  After a little while the parents filtered down into the competition area from our more or less quiet waiting spot.  OMG - no other way to put it - it was enormous - a cavernous room with 5 huge stages separated by dividers, each with a stadium size video TV, concessions, photo review computers and thousands upon thousands of spectators and cheerleaders.  It was of course loud and chaotic but also strangely energizing.  By the time our team was "on deck" I was so nervous and excited you'd have thought we were at the Olympics.  For the performance the team's supporters get to stand in front of the stage in a gated off area.  It was so amazing to see all the parents, family, and even a GA Tech cheer squad standing behind me cheering their hearts out.  The kids did great, Cate made it up to the top of the formation and did the whole cheer/dance without a hitch.  She even surprised me with a new move in front of the second formation where she did a heel stretch while standing on her buddy's leg.  Even though noise & loud arenas can upset her sometimes, when she is performing she gets in a zone and not even this thunderously loud venue slowed her down.  We were too far below the stage and the buddy's were kneeling in front so pictures were pretty much impossible.  This is the best I can do but at least it shows the immense stage.   You can barely see Cate's head over the coach - this was the heel stretch pose.

Cate after performance (her bow didn't survive sommersaults)

Cate & Ashlynn

Eliza, Ashlynn & Cate

Afterwards she was bursting with excitement and very proud of the cheersport blanket all the girls were given.  She chattered all the way home the first day and at bedtime could barely keep her eyes open.  Sunday we did it all over again but added daddy & Lucy as spectators. 


Cate & Lucy playing while we are waiting day 2.

Cate with her Buddy Megan& Coach Taylor

playing around while waiting but this is exactly how Cate looked in the actually formation!  So straight & tall!!

We ended up placing 11 our of 15 in our division but it didn't even matter.  Cheersport gave every special needs participant a "national champions" letterman's jacket to go with their medals.  Cate was over the moon.   So maybe I'm a convert - I can now see traveling to experience this with my kid.  The competition was fun, exciting, and I was as proud as I have ever been in my life of my awesome girl.

 

The last picture is a worn out Cate on day 2, but our day was not yet done.  Cate & I proceeded from the cheer competition & awards to the airport a couple hours later to catch a flight to Florida (which is why it took me so long to get this post up).  That lucky girl got to spend the week swimming and visiting with her Grandma & Grandpa.  Ric is going back to get her today!!!

Valentine's Day - Who Knew?

OK so I guess I've been living under a rock for years because I didn't know that Valentine's day was such a major holiday.  Ric and I are more of a "get a babysitter & go for a good dinner" couple than heart candy & flowers.  That way there is no pressure on either to think of a gift plus we get a night away from the kids which means I get to eat a hot meal without multiple trips to the potty - nothing I can think of I want more!  We don't even do that on the actual day but wait until the next convenient weekend day that we can wrangle a babysitter and don't have to take a 10pm reservation because they have all been taken.  I actually spent more time thinking about Valentine's day this year than any time since I was 20 and I still didn't know how big it was out there.  I was one of the room mom's for Lucy's Valentines day party.  My co-mom and I managed to plan a party that included a snack, 3 games and a craft but only required about 15 minutes of prep and very few supplies.  We did fruit & chex mix in little cups and I made some Lucy-friendly cupcakes (store bought Duncan Hines mix with no eggs/milk in it made it with oil & applesauce - I little flat but still tasty with store bought strawberry icing whipped up).  We played "cupid says" (simon says - no supplies), "heart potato" (hot potato with a heart pillow, again no supplies except a pillow Lucy already had), and "knock, knock, who's your valentine" (a guessing game requiring only a blindfold).  For the craft I actually did venture in the scary place called Pintrest, searched cupcake paper craft and latched on to the first one I found.  It was super easy, used some of the stacks of cupcake holder I have plus some ribbon scraps a friend game me plus some paper cut outs.

Of course this was my sample - their version had glitter hearts in the center, green paper leaves instead of highlighter colored ones and  little clear "Love" sticker on it.   The kids seemed to like it.  I have to say for a non-craft person it went pretty darn easy.  Everyone had fun at Lucy's party even though we didn't spend hours getting ready for it.  The kids were a little sugar-wild and made me thankful to not a pre-school teacher but funny and cute too!

Sorry I got off my topic - so what got me wondering about the explosion of Valentines day was a trip to Cate's school early this morning.  Her school had "family breakfast" where you can go in at 7;15 and eat a lovely pre-packaged breakfast with a quartered orange and orange juice from a carton for $1.50.  Ric normally goes with her to these things since I've already been at work for a half hour but today he was sick and I didn't want him anywhere near a school lunchroom.  I couldn't stand the thought of her not having a parent there so since my very understanding boss let me come in late, I took her.  As we were sitting in the cafeteria munching, I watched parents & kids coming through the door with flowers, candy boxes, and tissue filled gift bags.  I assume all this was for the teachers.  I have to admit getting the teacher a present never entered my mind, like I said I don't even buy my husband one.  Now I did help the girls fill out their Hello Kitty and Disney Princess valentines to pass out to the classmates and teachers but that was the end of my thought process there.  Those little paper cards in a decorated shoebox is what I remember of valentines day.  That and my parents giving me a little heart shaped box of chocolates - a very minor affair in my early days.  Now it seems kids have bigger parties and give bigger gifts.  I feel kinda guilty I guess - hope my girls teachers don't feel like we don't appreciate them but who knew that valentines day was that opportunity???

Friends and Birthday Parties

A fear that a lot of mothers of children with DS have is "will my child have friends"  or even specifically "will my child be invited to birthday parties".  Birthday parties for those of you without small children have become a big deal in the pre-school and elementary school set.  Mothers are supposed to put on beautiful themed parties for their kids every year or at least you have to believe that if you spend much time on social media.  Around here most parents elect for the "location" party - a party at a local bouncy house, gymnastics or some similar place where the kids get to run wild for an hour or so and all we have to worry about is providing a cake, maybe pizza, and goodie bags.    We did this last year for Lucy and it was wonderfully easy making worth the expense even if it was not as memorable and sweet as Cate's 6th birthday tea party at home.  It can be very disheartening to mom's who have to hear about other kids birthday parties when their child hasn't been invited.  Your child with special needs they might not care or understand the implications but you do or at least think you do - it adds to our fears about our little ones not developing the close friendships that are so important as kids grow.  We all want our child to be liked and accepted so its not surprising we worry if the birthday invites don't come for them since it is a symbol of exactly those things.  So if any of you ever have doubts about inviting a child with special needs to your kid's party - please think about doing it.  Most parents of kids who need extra help will be more than willing to do whatever is needed to make sure it is not extra trouble for their child to participate.  Plus I firmly believe that all young children benefit from inclusion in any sense - I think when kids learn early that everyone is different and that differences are not scary it is easier to teach them to help others and stop bullying.  I would never be upset if another parent approached me to ask if I could help Cate participate in a group activity if needed.  Ok getting off my soapbox now!

I am not explaining this because it is a problem for Cate but instead to try to explain why I am so grateful that Cate is invited to birthday parties.  I'm pretty sure Cate's friends mom's think I'm sightly crazy because I am so emotionally thankful when we are leaving a party.   I have to tell them how grateful we are to be included because I just can't help myself.  I'm positive they don't get it and wonder what that was all about but I just know we are so lucky to have such an accepting community - it is really not like this for every or even most kids who have special needs.  I know the kids at her school love Cate, they gravitate toward her, her schoolmates help her through her day but I also know she doesn't always reciprocate.  She is a very sweet girl - always worried about anyone who is upset or hurt, but she prefers to play by herself and it take multiple attempts before she will accept an invite to play.  At her age many kids give up before she is comfortable enough to involve herself in their play.  So I would guess that even though her classmates like her, they might not think of her when they are inviting their friends to play at their birthday partly.  Some of that might have to do with her speech differences - it can be hard to people who aren't completely listening to Cate to understand what she is saying, especially if it is out of context.  Of course kids her age barely listen to anyone so it would be hard to involve Cate in their play if she wasn't complete willing.  That why it is so important to me that she continues to be invited to the outside activities like birthday parties.  They give her a time to be included with little action on her part required and normally me there to give her a little push in the right direction.

We went to a fun party recently of a girl in Cate's Daisy Troop.  It was at one of those "wine and painting" places - substituting juice and cookies for wine of course - where a teacher walks you though a painting step by step.  I was really worried this activity would not be a good one for Cate,  both because of her fine motor skills delay and her attention span deficiencies.  But she had done pretty well with a painting pottery party a few months earlier so I decided to give it a try.  I was impressed on all respects.  There wasn't a ton of interaction between the kids during the painting and afterward Cate found a mom or two to wrap around her finger instead chatting with her peers but as far as the actual painting went - she did great.  The other mom's were moved into a viewing room but I did stay to help Cate stay on task and following instructions.  I tried very hard to stop my perfection tendencies and let her do her own work - and for the most part she did it all herself with only a small amount of help when she made a mistake.  I helped the most on fixing the tree & placing the circles.  She really did the owl almost completely by herself.  I probably can show this easier than explain so here is Cate's painting experience.

She was so proud we had to hang in up in her room right away then Facetime with Grandma & Grandpa to show them too!  Once again Cate shows me to never underestimate her!

Belated Birthday Post - Cate 7 yrs

So I won't bore you with a long explanation of why this is my first post in over a month - I'll just say that life has been chaotic since the holidays on all fronts.  Since I finally downloaded my camera for the first time since the beginning of December - I thought I'd do a belated post these pretty darn cute ones.

Way back on 12/22 and that seems like ages ago right now - Cate had her 7th birthday. It was such a fun day since it was on a Saturday and we got a whole day to celebrate as a family.  We got to do a birth minute picture and give her an early morning gift.  Prior to her birthday, I offered Cate a choice - she could either have a small birthday party for a few friends or she could go to the zoo and feed the elephant since both would cost about the same. She quickly and definitively chose the elephant!  So around lunchtime on a cold beautiful sunny day we headed down to the zoo to have our adventure. Our zoo offers small "behind the scenes tours" which end with each participant getting to feed an animal. The elephant was the one in our budget plus it is one of Cate's favorite animals.  I had to accompany her and I'll admit I wasn't really looking forward to it.  But I was pleasantly surprised - it was a lot of fun and very informative without being boring.  The first half was just a talk about the elephants that live at our zoo and they had lots of interesting facts about the habitat and specifics about zoo elephants plus a few funny stories.  Then we moved inside to talk about the animals and their quirks.  Like the one in this picture - Kelly - is a type A personality and hates to wait so she can often be found swinging her trunk and body back and forth like she is dancing if she knows a feeding or playtime is coming up.

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After that portion of the talk we moved to the "behind the scenes" portion.  As soon as they said it was time to go around back , Cate took off running towards the gate hands in the arm saying "YEAHHHH" - such pure joy that everyone had huge smiles on their faces.  At the back entrance to the elephant habitat they brought Kelly right up to the gate and had her run through a bunch of her training exercises designed to give the keepers view of all parts of her body so they can make sure she is healthy.  We also learned that our elephants look reddish instead of grey because of how much time they spend rolling or laying in our area's native red clay.  Cate was right up front the whole talk and even asked a question about what elephants eat.

Since she was the birthday girl she got to pet Kelly first.  It was crazy to see how little Cate looked next to that huge elephant.  But she reached out and petted it with no hesitation.

She wasn't quite as sure about being the first to feed Kelly so she decided mommy should go first.  I was told it could be a wet experience but it wasn't too bad.  The end of the trunk is very hard cartilage but it was cold and a little muddy from her picking up things from the ground.  We each got to feed her a large piece of lettuce.

Cate did great when it was her time although in this picture she looks scared, she wasn't at all, just wanted mommy close by!

Even after the elephant feeding, we still had lots of fun going on the carousel and making a trip to the playground.

That night, my parents had their annual party for Cate's birthday.  Complete with a homemade strawberry cake - YUM!!!  First we ate dinner with the family, normally Cate is a big eater and not much on dessert - but this night she was all about the cake.   Dinner finished and the adults were wasting time chatting and finally after her third inquiry if it was time for cake yet grandma said yes as soon as we clean up the table.   Cate puts up both hands and says:
"Wait guys I know what to do. "
"Lets use team work"
"Break up into two groups - mommy & daddy get the plates, grandma and grandpa pick up the food, Pete and Wanda get the glasses"
Of course we are all slightly speechless at this declaration and every is starting to laugh when my sister in law says - "Cate do we have a task" so Cate responds "Brandie and Lane you can do the dishes."
(That is actually an exact replication of the conversation because I wrote it down immediately I was so tickled!)

My wonderful 7 year old!  Still not sure where time went but I'm blessed to have such a beautiful girl who is full of life, joy and surprises!