Monday, April 30, 2012

The imagination milestone

I have no way of knowing if every mom is as aware of milestones as moms of special needs kiddos.  I know most moms of infants watch for that first smile, first step, first word but after the two years when the major milestones pass do they still watch everything their toddler does looking for things listed in books as developmental milestones?  I'd guess most don't but when you've spent the first two years working hard for every milestone from walking to pincher grasp to two word phrases I'm not sure you can ever stop watching.  Of course now Cate's milestones are all related to school so it is not just me watching - sounding out out words, writing her full name, sight words - etc. 

When Cate was little I found out about one milestone I never knew was important - pretend play.  I'm sure there is some book out there that tells you how important pretend play is for a child's development but I missed that one.  When Cate was about two years old we had a PT session at our home and the therapist saw her pretending some blocks were food in the play kitchen.  She asked me if she did that often.  When I said she did it all the time the PT told me how awesome it was she was doing pretend play.  I was caught by surprise, it never occurred to me that pretending a block was cake or a shoe was a phone was important stuff.  But when you think about it you can see how much cognitive development is required to take one object imagine it in another form then build a play scenario around it.  Then its not a big leap to see how great a milestone pretend play is because how hard must it be to teach that in therapy? 

The reason I went off on this little trip down memory lane is that ever since that day, I have been very aware of Cate's pretend play and kept a close watch on how it is developing.  Last week I saw another jump in that development.  Cate had to come to work with me the day of her dentist appointment at 6:30 am.  I'm lucky enough to work in an office where there are lots of things for a kid to do - we have two dogs that live here and are friendly as well as a playroom.  But since it was so early and I really needed to work at my desk, I decided to make Cate play in my office.  So I borrowed a blanket and a game of Connect Four from the back and set her up on the floor by my desk.  She loves to move blocks or checkers from one place to another so Connect Four was something I figured she'd play with for at least 15 or 20 minutes.  I set up the game thing that your drop the checkers into and showed her how to release them from the bottom.  She sat here and played with that game for over an hour.  She pretended to be playing the game, she pretended the chips were money, she made towers, she grouped them, she chatted with her "class" as she taught some lesson involving lines, and then she made patterns.  I even heard her say "I'm making a pattern like ABBA".  And when I looked at her, I saw a line of checkers red - black - black - red - black - black -red.  I recognize how great this is - she is internalizing the lessons she is learning in kindergarten and incorporating them into her pretend play.  GO CATE!!!

Thursday, April 26, 2012

Cate's first "real" movie!!!!

Last weekend we did something new and exciting!  Ric & I did a special time with the girls.  He took Lucy to the zoo with a friend and his son - Lucy had a great time and still is talking about it.  Meanwhile, I took Cate to a real movie theater to see her first feature film!  She has been to see a couple plays and even to see Curious George at a small local theatre but never to see a full length movie.  Cate picked out a cute outfit and even asked for a hair bow!  We went to see the new Disney Nature movie Chimpanzee.  One of the reasons Cate hasn't been to a movie before this is that she is very sensitive to loud noise.  We saw it affect her at Disney and it affected her at the theatre experiences I mentioned above.  You know how loud movie theaters are - its absolutely crazy - and then add to that a big dark theater and a bunch of strangers and it just didn't seem like the right thing for Cate.  But she is six years old and since deserved a treat after a week of getting ALL GREENS for behavior at school.  I thought Chimpanzee was a good candidate not only because she loves animals and is always watching documentaries but because it was filmed by the Jane Goodall Society so it is all real life jungle film footage and was bound to be quieter.  Well I was right - for once ;->!

Of course before I could be right we had to walk into the theater while the previews were playing.  For some unknown reason Regal Cinemas thought it was a good idea to preview The Hunger Games before a rated G Disney movie.  We walked into a fight scene I'd guess with techno music blaring.  Cate turned around and walked out before I had the door closed.  So I decided that maybe popcorn was in order.  After a very long wait we took our popcorn and sprite back into the theater.  This time the movie had already started and it was almost silent when we walked into followed by a calm narration by Tim Allen.  The movie was excellent for Cate - all animals and only a little drama/scariness.  She was mesmerized by the chimps and of course the popcorn.  She spent a little time in my lap during the attack of the rival chimp gang but mostly she tried to sit in her own seat.  That was challenge in itself because she is not really heavy enough to hold the collapsible seat down if she scoots back too far so my arm got a little workout trying to hold it down for her!  The film this team got of these chimps and the story that unfolds is truly amazing.  All in all it was an excellent mommy-daughter afternoon!

trying to sound out the word - which is much easier when you already know what it is!

Cate is telling me "Hello -I'm the movie theater girl, can I help you?"

more sounding out - had a little trouble with these words

Wednesday, April 25, 2012

Look Mom No Cavities! (Taking a child with Down Syndrome to the Dentist)

Today was an excellent visit to the dentist for Cate.  She cooperated, verbalized when she needed a break, and her teeth looked great - no cavities!!!  This has not always been the case for us, as evidenced by the fact we are only allowed the first appointment of the morning on Wednesdays and Cate has to show up to the appointment ready for sedation if necessary.  My friends with children with Down Syndrome have had a mixed set of experiences at the dentist - some kids are perfectly fine with it, some have to be sedated every time.  Cate has matured into being able to handle the dentist but that has only been true of the last year.

No cavities!  And there front tooth waiting to make an appearance in the spot that's been open since October!

Think about it - why is anyone fine with the dentist?  You go to a person who is practically a stranger, let him chain a bib to around your neck, then allwo him to pin you laying down with your mouth wide open while he pick at your teeth and gums.  Crazy?  Well lots of kids with Down Syndrome are extra sensitive to this situation and can't be prep enough or convinced to let this craziness go on in their mouths.  Cate use to be that kid.  She started going to the dentist at 2 years old which she had an odd arrangement of baby teeth come in which did not include her front teeth.  She did OK for those exam only visits when the dentist let her sit in my lap then just lay back into his for a few minutes at a time.  It wasn't until the first real exam and cleaning that Cate lost it.  She cried so hard she had little pin pick marks around her eyes.  They got the exam done and a very fast cleaning but no floss or fluoride that time.  The next time was even worse. She cried so hard that there was blood in her tears - seriously it scared the living daylights out of me.  Needless to say we stopped that appointment and rescheduled since they haven't even finished the cleaning or x-rays.  Ric took her to the new cleaning appointment and he stopped it as well once she started going into hysterics.  So the next time we took her in with no food after midnight so that they could sedate her.  It still was pretty horrible - she moaned the whole time they took x-rays and cleaned.  For the next year and a half she was sedated for every appointment including a simple cleaning.  Unfortunately there were quite a few because she had 5 cavities by the time she was 5 years old.  This is actually against the odds for a child with Down Syndrome.  Although statistically as a group people with DS have higher instances of gum disease, they have significantly lower instances of cavities - no one knows why. 

Actually I think I might have figured out how I contributed to the cavity issue for Cate.  It was hopefully a combination of things - the first being she was on antibiotics about 20 times before was 3 years old, which can weaken tooth enamel.  The second factor may have been totally my fault - honey.  I give the girls honey when they are coughing and it works great for them.  Unfortunately I do this in the middle of the night most often.  So I was giving them straight honey from a spoon and it just sat on their teeth all night usually a few nights in a row.  OOPS!  It just hit me recently when I was doing it that might not be the best idea for cavity prevention.  I'm trying now to give it to them before they brush their teeth if I suspect a cough might be coming on.  Then if I do have give it to them at night, I at least get them to drink water afterward.  I say these are hopefully the two reasons because if so then maybe we can prevent it from happening as her big teeth grown in.

This last year Cate has done a little better every time we go for a cleaning.  A few visits ago I asked to try it without sedation and she did pretty well after lots of prepping and bribe of breakfast inside at McDonald's before school.  I told the hygienist about the bribe and every time Cate started to break down she reminder her and of the reward.  Ever since then we have gone prepared for sedation but never had to do it.  This visit she did awesome!!!  Never even cried once or had that pre-panic look.  She did ask for a couple of breaks but we got in the exam, cleaning, flossing, and fluoride paint with practically no issues.
at the dentist

So if you are a mom to a little one with Down Syndrome or other sensitivity issues I have some bits of advice.  First - find a pediatric dentist who frequently deals with children with special needs because they should have more options for your child - sedation, a papose (restraint system), sitting in your lap, breaking up appointments.  Asking around to your friends for recommendations then calling and discussing special needs options with those offices is probably your best bet.  I was lucky enough to have a friend who works with a dental association and she was able to get me a name based on reviews & listings for special needs - awesome friend huh!  Second - start early, in my experience Cate grew more comfortable as she got old and more used to the process.  I think she finally got comfortable because each time she remembered a little more and felt like she knew him a little more.  Lastly - be open to options like sedation or restraint when it makes sense but after some time give your child another chance to do it without those options.

Dr. Cate taking care of patient Monkey - he didn't have cavities either and "cooperated"

Drop off at school - yeah computer lab with our favorite para-pro today!!!

Thursday, April 19, 2012

First Grade here we come!!!

** sorry for my little unscheduled blogging break - my addiction ran its course but not until I finished the whole series of books! 

We had Cate's IEP last week and she has been official placed in a 1st grade classroom!  The process of this IEP was smooth and effective.  The teacher gave the team a copy of Cate's assessment scores and I was really excited.   She actually met quite a few of the kindergarten goals, and even exceeded one (she knows all her three dimensional shapes (cone, cylinder, etc)!  The areas where she is behind are not a surprise and are frequently related to her speech delays - like rhyming and things that require counting, she loses it between 12 & 18 in my opinion its part because they all sound about the same when she says them.  The IEP states she will be placed in a typical first grade class with small group for reading and math.  Her small group time will likely be in a different classroom but hopefully that can minimize distractions and will help her keep up on those important base skills.  The rest of the day there will be para-professional support and adult supervision during non-classroom activities like transitions and assembly.  (Cate decided to take a walk into a dark classroom the day before the IEP so that was non-negotiable!)  We are so lucky to have such an amazing team at Cate's school.  The entire team really knows her and wants what is best for her.  We didn't have a single dispute, everyone was on the same page.  The team was receptive to our ideas and great about answering our questions and more than willing to make compromises where necessary.  We did decide that Cate will start the year without assistive technology but will be evaluated at the start of the school year for a "mini-mouse" or other computer related items to help with her tiny fingers during computer lab.  The OT says she will "definitely be a writer" so we decided against help like keyboarding for spelling test or other language arts right now to be reevaluated later if we don't see the expected progress.  The last part of the IEP is related to testing accommodations and since 1st grade only does one standardized test that is read orally and includes pictures answers, we only had to write in small group testing.  She will also have small group or alternative testing available during normal class time if it is necessary.  Because get this - she probably have weekly spelling tests!!  I'm just not sure I'm ready for spelling test and math tests!  I'm still surprised every time she reads a little phonics book.  Where did my baby go?   Another great piece of news is that a friend of my mother's who teaches first grade has offered to be Cate's tutor over the summer!!!!  That is even better than getting ESY since the program in our district isn't really right for Cate.    I'm sure both Ric & I will be a mess at the "crossing over" ceremony at the end of the year.  Its crazy to think about our expectations when she was born vs how amazing she is doing now.  My girl is AWESOME!!!

playing outside with chalk - the pressure washer blew up so the deck was fair game while it waits to be cleaned - bet I'll regret that decision.

Cate loves to play with mulch, she will do it for hours - this was against the rules though the rubber mulch is suppose to stay with the play set

mmmm - what can I do with this??

a summer nap for sister

sometimes its fun to play while Lucy sleeps but

its fun to play when she wakes up too!

We tried really heard to just let the girls play outside with minimal supervision (Ric was working on the screen porch).  It was easy last weekend while the pool was still closed but we'll have to be much more vigilant now the cover is off.  I love spring but I can't wait until that pool is really open, especially since Lucy is getting to be a swimmer too.

Monday, April 16, 2012

my Addiction

My apologies for no recent posts when I have so much to tell you about but I can only blame it on my addiction.  My name is Lisa and I am addicted to books.  Before the girls were born I would read at least a novel a week, all fiction - ranging from almost trash romancey mystery to crime & law dramas.   Since the girls were born I've had very little time to read so now it takes me a month to read anytime that isn't captivating.  When Ric & I went on our cruise I read a book I loved called "Discovery of Witches" that was recommended by a friend.  I was dying for something new to get me only to be disappointment by my next two choices.  Then my friend at work convinced me to read "The Hunger Games".  I was not even a little interested given the premise but decided to give a chance since I had it in my hands the same thing happened last year with the first Twilight book - which I devoured.  I was hooked by the 4th chapter.  I love crime novels but they always on the verge of being real but I really love books that take me out of my life into a totally different place whether it be to a place where vampires live among us or a post-elliptical world.  So I plowed through the first book, reading until long after I should have gone to bed and anytime the girls would allow me to zone out.  I made myself wait a week before downloading the second one on my Kindle Friday.  I figure at this rate I'll be done before I go to sleep tonight.  So I promise some real stuff - I did take some new pictures this weekend - in the next couple days along with post about our new developments in school (yeah Cate!) and a new activity (rah rah!) - if you'll forgive me this little addiction, I need to get back to work so I can get home to read!!!

in the meantime here is a picture of my big girl shopping at Whole Foods - her new favorite grocery store given the discovery of the kid size shopping carts!

Wednesday, April 11, 2012

Easter Pictures

Not much to say here that you can't see for yourself!  The girls has a great Easter - they loved Sunday School as usual, looked adorable in their dresses, had lots of fun on their egg hunt and loved having their family over for dinner.

Cate has once again become our go to person for saying grace.  Before dinner she insisted everyone hold hand while she thanked everyone for coming, thanked them for bringing food, said thanks for her family that she loves including her sister Lucy, and then did a shout out saying "and my daddy who is the best daddy in the world", Amen.

Easter 2012 - My beautiful girls

hunting for eggs on a beautiful day

found one basket!

found the other basket - guess our easter bunny must be from the north because no one down south seems to hide the baskets along with the eggs!

oh my an extra basket for both girls - this is Cate doing a happy dance not trying to reach it, she recognized the prize right away

She LOVES this Barbie Mermaid movie - OK egg hunt over turn the movie on please!

Monday, April 9, 2012

A letter to moms thinking about a special needs pre-k

** promise of cute Easter pictures soon - I forgot my camera to download today!

On my favorite DS message board many of the moms are trying to make the tough decisions about whether to put their 3 years olds in public pre-K program.  This is such a hard decision because children with special needs that are being served by a public program like Babies Can't Wait which provides in home or daycare therapy are transitioned to the public school system when they turn 3 years old.  It is comfortable to deal with a public system for your baby when the therapists come to you and you have some control over who & where and probably even get to attend and/or participate in the sessions.  It is much harder to throw your 3 year old into a public school system with teachers you didn't pick and have no control over.  The other factor is that sometimes of our kids have had therapy since birth and attended typical daycare or have the skills to so we as parents want them to be in an inclusion program once they get into school - either in a completely typical classroom or an inclusion room with both kids with IEPs (Individual Education Plans) and typical children.  That's what everyone tells us we should want for our kids.  Well many (and I'd guess most) school systems don't have 3 year old typical pre-k program so we are forced to go against what we hope for and have been told to fight for and consider putting our 3 year olds in a self-contained special needs pre-k class.

I've had a couple of ladies send me notes asking for more specifics when I voice my opinion for participating in a special needs pre-K program.   I know not all school systems are as great with special needs as our but the bottom line is you have to see it for yourself.  Listening to advice of the people around us - other moms in the school district, the moms in our DS group, and the moms on our boards - is great and helpful but really only gets you so far.  Each child is different and each school system is different.  The only way to know if it is the best thing for your child is to try it and see, one visit won't tell you, one transition meeting and set of evals won't tell you either.  This is our story and the basis for my opinion.

Our district doesn't have a general ed pre-k for 3 year olds, the only option is one special needs class that meets 5 days a week for 3 hours a day.  We were so hesitant to put her in that we actually didn't do it when Babies Can't Wait transitioned us there when she turned three and instead we left her in her daycare situation which we loved.  I think I was scared because of the label - I was envisioning a whole room of kids who didn't speak correctly and had behavior problems. My timing had been poor and the couple times I'd tried to visit the kids hadn't been there for one reason or another.   But when the new school year rolled around I decided to look at it again because I was afraid we'd lose our waiver that would at least allow us to get speech therapy.  So that fall we decided to enroll her 3 mornings a week, thinking if it didn't work out we'd pull her.  Sure there were kids in her new class that didn't speak well, there were some at Cate's level and a couple with other issues that spoke perfectly.  We never had a behavior related issue with any child in the room and Cate's behavior did not suffer in the least.  I think the two biggest positives were that the whole class centered around speech and the skills of being at school.  Almost every activity was focused on vocabulary, sentence structure and speaking.  The teacher are trained to do this and do it purposefully.   Our daycare was a "learning center" style facility and they did a great job teaching Cate new things, I really thought she was getting what she needed there.  So I was very surprised to see how much she grew and learned after only a few weeks in the special needs pre-K.  The most obvious change was the expansion in her language.  We were so impressed that we didn't hesitate to put her in 5 days a week the following year.  That class was even more amazing for her.   The building that houses the special needs pre-K class in our district also has the HeadStart program, which is a federal funded pre-K for "at-risk" kids.  We were lucky to get one of the non-financial need based spots in the HeadStart pre-K class so Cate did a full day starting the fall after she turned 4.  She spent the morning (7:30 am- about 11 am) in the HeadStart room which had 18 kids in in, 6 special needs, 12 typical who mostly came from non-English speaking households, taught by a teacher and two - three para professionals.  She had lunch in the cafeteria with all the classes, then spend the afternoon in the Special Needs room (until 2:05).  I could not have taught her the things she learned there like how to deal with a daily classroom schedule, how to manage eating lunch in a cafeteria, and how to raise your  hand participate with group.  All these are things that typical kids might not know going into kindergarten but they figure them out.  For Cate this wouldn't have been so natural - she needs to be taught these skills or she will act out.  She came out of two years of prepre-K teachers deserve so much thanks and praise.

So my opinion is don't listen to me or to the other moms - give your pre-K a chance.  If it doesn't work out you haven't lost anything, there is no contract or cost - so you are only out some hassle.  But if it does work out you have the chance use the self contained pre-K attention to give your child a good base for moving on to an inclusion or mainstream kindergarten situation.  Good Luck!!!

Cate's Pre-K graduation

Friday, April 6, 2012

Zoo Camp!

Well I was worried for nothing!!  Cate did great a the zoo day camp yesterday.  Her counselor said she did awesome and really didn't need to have a helper.  She said that Cate kept up great, participated, and even told the group about whales!  I love it that they let her talk about whales even though there are not at the zoo of course.   The zoo did a great job - drop off & pick up were smooth, Cate came home with all her lunchbox and other stuff, and they even sent an update of their topics for discussion starting at home.  She ate almost every bit of her lunch - only a couple pieces of cheese and the paper cups were left. 
Unfortunately this is the only picture of Cate at zoo camp and it was starting to rain so I couldn't even get out of the car to take it with my phone -

I wish I had a better picture because she looked so cute in the new outfit I bought her - a panda shirt & black skort.

It was a very long exciting day so I didn't get too much our of her - our girl was pretty grouch by the time we got home.  She did say her favorite part was petting the rabbit named "Pumpernickel"!!! (his real name I swear - if you know Cate you've heard her say pumpernickel before since its her favorite "silly" word - she even calls her teachers that sometimes at school!).  She told me they couldn't hold the rabbit but got to pet it with two gentle fingers.  She also said they touched a lizard and it was bumpy and soft.  Not so sure about the softness but I'm sure it was bumpy - the update note from the zoo director said it was a bearded dragon, whatever that is! Most of that I had to drag out of her in the car using the info from the update email.  Then 10 minutes from the zoo (the drive is about 30 minutes without rush hour traffic) it got really quiet in the back seat -

Guess she was tired out to sleep like that for the next 45 minutes (we hit a dead stop traffic disaster which doubled our trip home).

When she woke up from that bizarre nap, our girl was GROUCHY.  She didn't even want to call grandma or her daddy who was out watching the Sabres game to tell them about the zoo.  I did get some more out of her at bath time.  She said they saw lots of animals and that the lions were roaring and walking around (a rare occurrence for us to see).  She got to see the baby panda and the baby giraffe.  She also said she saw one of her teachers, who volunteers at the zoo.  Mostly we know she loved it because this morning she asked if she could go back to zoo camp today!  I think we'd better sign her up for a summer session.

Poor Lucy on the other hand got to go to the doctor for her 3 year well baby visit.  All is well and no shots this time so that was excellent.  She did great and was even giggly until they tried to take her blood pressure - she refused to sit still so that test will just have to wait until next year.  But she did pretty well for the toe prick so I decided she more that deserved the treat of lunch with mommy at McDonald's!

Needless to say - I am thankful for a great day for both girls, even if it is for different reasons!
Hope everyone has a great Easter weekend.

*** update - I just got them email from the zoo camp director:
Hi Lisa,
I spoke to Meredith yesterday and she said Cate was wonderful. Only once did she need some alone time and that was during arts and crafts. It wasn’t behavioral or anything she just wasn’t too interested in the craft we were doing. Meredith took her into another room and Cate gave her a keeper talk about all kinds of animals! I walked in and was amazed at how much she knew. Meredith said although she didn’t necessarily need the extra helper, that it was nice to have just in case Cate got super interested in something. Then Meredith would stay with her while Dana the volunteen had the rest of the group.
I hope she enjoyed camp as much as we enjoyed having her here. Let me know if you have any other questions and thanks for letting Cate spend the day with us.

LOVE IT!!!  My girl is so awesome!!!

Thursday, April 5, 2012

Nervous Mommy

I feel like today is the first day of school for Cate all over again.  Today she is doing a day camp at the zoo.  Since the zoo is her favorite place and she always says she wants to be a zookeeper, I just so want her to love it.  But I know I'm nervous because I don't know the counselor and all the kids will be strangers to her.  I talked to the program director before I signed her up and they seem great.  He is going to assign her a "volunteen" to give her any extra assistance she needs - like to direct her back to the group when she wants to see pandas and the rest of the group is heading for tigers.  I also sent him a copy of Cate's "All About Me" packet I made for her current teachers.  Probably overkill for one day I realize but I have not having any control!!  Depending on the # of kids that signed up, her group will either be 10 kindergartners or a mix of kindy & 1st graders.  The counselors have to have two years minimum or higher eduction and experience as a group leader so that helps me feel a little more secure.  The theme today is "what animals eat" which is Cate's favorite topic.  I hope she raises her hand and participates in the discussions since I know she is comfortable with the subject.  They explore the zoo including some "special" sites not available to public, do crafts, songs, and play.  I even bought her a new outfit with a cool panda t-shirt (sorry she wasn't dressed when I left for work so I'll try to get a picture at pickup).

Ric is dropping her off this morning so I'll get to pick her up this afternoon since its a full day camp.  Everyone keep your fingers crossed she has a great day!!!  I'll report back tomorrow if she'll tell me anything that is!
I did the only thing I could to help her today, packed her a good lunch of rotisserie chicken, cheese, oranges, green beans (I know that sounds funny but I'll bet she eats these first), goldfish & oreos with some chocolate milk.

Tuesday, April 3, 2012

Cate's Cricket Delivery Service

We had a wonderful weekend away at a friend's cabin this weekend.  They have a son that is a year older than Lucy and the kids played together so well.  The highlight for Cate by far though was fishing.  We did two trips out to catch the little (and one big - go Courtney!) fish in the huge lake.  Cate has done this before and had no fear of touching live fish or holding the ones ready for cleaning.
Cate 2010 trip to the cabin - proud of her fish!
 This time she added to her lack of fear and became Cate's Cricket Delivery Service.  She'd reach right into that live cricket keeper, pull one out and deliver it to the fisherman in need.  Of course quite a few made their last ditch effort at escape only to find themselves in the lake.   She loved having a job as much as she loved helping them reel in a fish that was caught or netting one while someone else reeled. 
who needs a cricket

Too little so Cate releases this one back to the lake

Fisherman Cate & daddy

David, Lucy & Ric

Who says Cate won't get a driver's license - looks like a natural to me!

Captain Lucy

Captain David

David & Lucy having fun together

we called these three a "school of kids" because they moved as a pack from the front to the back of the boat - we were all amazed that none of them ended up in the lake

family fun!