Thursday, October 31, 2013

"I Tree"

She's three and she knows it and she is a big kid now and won't let anyone forget it.  Trick or Treating and the Church Carnival tonight was adorably cute and astonishing.  Reagan was really into it.  She played all of the games with enthusiasm.  She got her face painted just like her sisters and held so still for it.
 She mastered "Tick O Teet" and charmed the socks off of every single person giving her candy with her "Tankoo" complete with sign.  She insisted on carrying her own bucket and being a part of the group.  But beyond the cuteness that is standard and the participation which we have come to expect from her, she blew me away with her attention to instructions and conversations.
 At one game she was told she could pick two candies.  I didn't even think Reagan could count to two much less follow a complicated instruction like that, but she picked one candy, put it in her other hand, picked out another and put both in her bucket and walked away without me saying a word!  I was floored!  Then later a person at one house asked if she was younger than two.  I responded that she was three...as we walked away she repeated "I tree, I tree" and held up three fingers!  I didn't even think she was listening, much less comprehending.  Obviously Mama needs to raise her expectations.  I have a feeling this is going to be a constant refrain from now on. :)
 And now I say farewell to October and daily posts, but I promise to all of you who have been so happy to hear Reagan updates that I won't go a whole year before sharing again.  Next week we will learn about her hearing and I will update on that.

Wednesday, October 30, 2013

What it Means

Reagan has Down syndrome.  We all know that by now right? ;)  But what does that really mean?  Technically speaking it means that she has Trisomy 21...that is three copies of her 21st chromosome.  Instead of the 46 chromosomes (23 pairs) she has 47...shoulda known that a kid born to musical parents might have a triplet thrown in just to keep it interesting lol.  Medically speaking that extra copy can contribute to a long list of possible side effects.  Some of these Reagan has and some not.  Her vision seems un-affected.  Her hearing...not so good.  Her thyroid is fine, but her heart was broken till her amazing surgeon fixed it.
  At three years old she is pretty much past the big scary possibility of leukemia.  She does have some delays in development, but she is working hard.  These are facts.  But they do not capture the heart of what it really means to her and to us that she has Down syndrome.  It means that she has an extra big heart that only sees the best in people.  It means that she has a little extra drive to accomplish those things that are hard for her where others might give up.  It means that she has something magnetic in her personality that shines through her smile and draws everyone...and I mean everyone she meets, and brightens their day.
 I don't know how many times I've had someone (who can't tell she has Down syndrome) tell me that they don't know what it is about her but she is just the sweetest thing and she makes them smile.  Talk about a purpose in life....who cares if you can't do Calculus if you can just brighten the world by being alive!  It means that she has opened our eyes to what it means to look beyond our predictable plans for our lives and see the gift of the unexpected.  I can't even imagine what life would be like if I had the baby I expected instead of Reagan...it seems like it would be boring and flat and stale.  And I think about the people who have so enriched our lives that we would never have met (both in real life and virtually).
 Some of Reagan's chromosomally enhanced influence is tangible and easy enough to list.  But some of it is just a feeling and knowing how much better off we are with her that I can't quite ever put my finger on or express in words, but I know that I am so grateful to be one of the blessed ones to have a child with Down syndrome in my life.  We are coming to a close on October now and the task of raising awareness daily is ending, but those of us whose lives have been touched by Reagan and her "triplet" will always be aware....so if you have a second, tell me what it means to you...

Tuesday, October 29, 2013

Chasing Rainbows

A couple of things have been rolling around in my head and heart the last couple of days and I have been contemplating how they come together.  I don't profess to be the best or most inspiring writer, but this is what has come to me.  Someone on facebook brought up the question of fear vs. faith, especially as it relates to having a child with (the risk of) serious medical conditions.  How do you balance vigilance and fear and faith that God is in control.  As mothers we are the ones who know our children the best and can see if things seem off and we should not discount this.  God created this in us when He designed us to be mothers.  And when your child has something like Down syndrome (or in the case of my dear friend, severe immune suppression and 5 transplanted organs) you know some of the increased risks that come along with it.  And they are scary and they are real.  I've been there.  Reagan had open heart surgery at six months old and it just about killed me.  And every time she gets blood work done I wonder will this be the time, the time when the numbers are wonky and we have to face more fears.  Some people will tell you that fear is not of God, that you need to give it up.  Personally I think that is hurtful hogwash.  Fear is real and fear is valid.  It is what you do with the fear that matters.  I think a good way to think of it is do you live in fear or do you live with fear?  If you live in fear then the fear is ruling your life, your choices, your perspective, and there is no room for God's peace or His plan.  If you live with fear then you are human.  And God can use the fear for His plan...to help you spot a problem, to grow you, to teach you compassion.  I come back to what my mother reminded me the night that Reagan was born.  We were faced with overwhelming, debilitating fear, not because we thought Reagan had Down syndrome but because of what it meant to her health right then.  We were frozen in the inability to move in what we thought was right because of the fear of what might happen if we were wrong.  And my mother gave me this verse.  "For God has not given us the spirit of fear, but of power and love and a sound mind" (2 Tim 1:7)  Not that we will not fear....but we do not have a spirit of fear.  We have power...wisdom from God, strength to do what needs to be done and face what challenges we are given.  We have love...from God, for our children.  We have a sound mind...that God has given us to use in judging our circumstances.  Where is your fear?  Is is pulling at your ankles and dragging you down into the quicksand of horrible possibilities, keeping you from moving forward?  Or is it peeping over your shoulder when you come up against the hard realities of life?
The girls and I were driving to choir practice on a stormy afternoon the other day and we chased a rainbow (a double one) entire way.  It was stunning.  And it sparked lots of commentary from the back seat.  One comment being a six year old's proud explanation that the rainbow was God's promise never to flood the Earth again.  That stuck in my head as I was pondering the spirit of fear.  And I realized that yes, the Bible tells us that God set the rainbow as a promise.....we've all heard the story a hundred times....but it suddenly occurred to me that the rainbow isn't only a promise not to flood the Earth or bring destruction to all mankind...it is really a promise of His goodness, grace and mercy...of His enduring Love and presence.  It is a visible reminder of Jesus' words to us "I am with you, always" (Matt 28:20).  And that is what I cling to when fear tries to grab my ankles and suck me down....I will chase that rainbow.

One last thing.  As I was contemplating this post I read this story about an amazing mother and woman of faith who lives with very real fear on a daily basis and I think she has mastered chasing the rainbow in a way that will bring you to tears and inspire you.  Go read it and be blessed.


Monday, October 28, 2013

School Girl

Reagan started pre-school today.  She loved it.  Mommy is not sure how often she should go, but we know this much for sure so far...she responds well to the program!
 So far I am reasonably impressed with the classroom.  The ratio of kids to aids is 1 1/2 to 1 so there is lots of one on one learning and it is all very focused on the skills Reagan should be working on.  I peeked through the window for a while and liked what I saw.  While I would still ideally prefer what we had before with therapy at home, I have to admit that I like her teacher who told me today that she did the in-home teaching/therapy for many years...no wonder she knows how to structure her classroom well.  So Reagan went, she charmed the socks off of her teachers, she didn't want to leave and I didn't hate it.  This is a good start. :)  She gets speech two times a week and there is adaptive PE (basically physical therapy) two times as well.  So we will see how much she benefits and in what way and feel our way through just how much she will go to school.

Sunday, October 27, 2013

What She Learns

I promised to do a post explaining the details of Reagan's Equine Assisted Learning, so here goes.  Reagan rides a pony named Sally whom she has come to love dearly and calls by name....cognitive, social and speech, check. ;)  And that is pretty much how riding goes for her.  Various parts of her ride work her in every area of therapy from gross motor through speech.  Reagan rides bareback (with a bareback pad)  in order to feel the movement of the horse more and encourage her balance.  This has worked wonders for her muscle tone!  Before she started riding when you picked her up she was a dead weight....she didn't hold herself up at all.  I noticed the very first time she rode the improvement when I picked her up after.
video
  Riding bareback has also improved her posture.  When she first started she was nervous and hunched into the horse, now she sits tall with a straight back and corrects her balance.  She even grabs the "reins"  to "steer" as her confidence and balance have improved.  She runs through a series of tasks and tells Sally to "walk on" (or as Reagan says "ahk ahn") after each stop.
video
  She weaves through poles on which she drops colored rings.  She has to say the color (cognitive, speech) and reach different heights and distances (gross/fine motor).
video
 She drops a baseball into a traffic cone (motor planning, balance).  She shoots a (small, she's tiny and the big one hits her helmet lol) ball into a basketball hoop (gross motor, speech.."one more time", "ball").  And she runs through a series of exercises extending her arms for balance.
video
  She is learning to care for her pony, she now helps brush her before saddling up.  She also know where her helmet is kept and gets it out and puts it away (life skills).  There is nothing that has not been improved by her riding and specifically her speech has improved (started really) dramatically from the day she started.  Now this is just what Reagan does.  The big kids like Austen and Dakota also get to do groundwork with the horses which works on a whole bunch of other areas.  Austen worked on communicating with the horses with speech and visual cues which works on his  communication skill and patience. (Ok there was supposed to be a video here but it won't upload...sorry Austen) The horses are such a blessing and can help with everything from motor skills to emotional needs and we treasure the opportunity for Reagan to work with them and the privilege  to help work with others like Austen and Dakota....and those of you who haven't started riding yet.  You know who you are and I'm gonna keep nagging you to come out! ;)

Saturday, October 26, 2013

Rawr

I am tired beyond belief tonight from way too much work and way too little sleep...and herding my ducklings around.  But I have a couple more priceless Reagan anecdotes to share.  Reagan is incredibly popular everywhere she goes, and no big surprise when you witness the cuteness and charm the eeks out of her every smile and gesture.  So tonight was the Harvest Bash at Clarisse's school/church and while we will be going to our own carnival on the 31st Clarisse really wanted to go where her new friends were going.  We had only 1/2 to spare but we took our costumes down for a few minutes of trunk or treat and a trip down the giant blow up slide (big girls...Reagan couldn't even reach the steps...not that she didn't try lol).  Reagan's costume this year by her own choice is a lion.
 So I put it on her and we started walking in and she played it up by "rawr"ing at everyone we saw....I'll have to try and get a video because you have never heard anything cuter than a tiny two foot tall person sweetly growling "rawr, rawr" and smiling cause she knows she's cute.  Then there is her favorite subject...cookies.  So one of the trunks at the Bash was dressed up as Cookie Monster with a giant chocolate chip cookie in it....and Reagan spotted it.
  And pulled me over, pointing "cookie, cookie".  And these are just two examples from today....this stuff happens every single day.  Oh am I ever so glad she is in our lives!

It's A Wonderful Life

So it's me again (Daddy) making my annual visit on Shauna's Reagan blog.  Moment by moment whenever I'm around her, Reagan's always smiling always has a cheery disposition and brightens every room she happens to be in.  And, her disposition always always rubs off on me (and pretty much anybody else who is lucky enough to be around).  So Shauna and I were thinking the tonight about how different our lives would've been had she not entered our lives.  She has had such a positive influence on us that it's hard to even imagine.  Of course we wouldn't have even known what we were missing but I'd like to think that everyday we would think that something was missing in our lives.  She is such a blessing from God that I know that she was part of the plan, she needed us and we needed her even more!  What I wanted this to say was that she is our heart, she is our blessing, she has taught us more in the last three years than we could possibly teach her and I wouldn't want it any other way (or wouldn't HAVE wanted it any another way).


Thursday, October 24, 2013

Bursting with Pride

I had another post half-way written, but I must interrupt it to bring you a moment of extreme pride!  We have been working for a looong time with Reagan on answering questions rather than repeating what we say.  Particularly yes/no questions which she has never, ever answered without coaching (which then is just repeating what we say again boo).  I did notice this morning that she nodded in response to my question of if she was hungry too and I thought that was pretty awesome, but that paled in comparison to tonight's achievement.  I was sitting on the sofa eating a (most amazing) chocolate chip cookie and, no surprise, Reagan climbed up and started telling me "cookie, mommy, cooookie, cookie"  So I told her yes baby its a cookie then just for fun I asked her if she wanted a bite....now her standard response to such a question would be "bite, bite".  But this time she looked me right in the eyes (I'm noticing she really looks at me when she's about to amaze me, like she knows she making a big accomplishment) and said clear as anything "yes, please"  Not just "yes" but "yes please" As you can imagine she got both the cookie and a great big hug from mommy and daddy who was lucky enough to be sitting right there too.  And lots of praise.  And we got a great big smile from a girl who knew just how big a deal it was. :)
video
I asked to again for the camera which of course didn't produce the same amazing results but we got it.  I should have thought to ask her if she wanted chocolate a long time ago...girl has a long history of performing for chocolate. :) (crawling, walking, jumping....)

Perseverance

I have been pondering Reagan's hearing since her test yesterday and something has occurred to me that is well worth sharing.  How many of you (especially those who know her in person) knew that Reagan struggles daily with poor hearing?  And why didn't you know?  Because she doesn't let it stop her.  Now don't get me wrong, she ignores me when she doesn't like what I say as much as any other 3...or 4...or 6 year old (who may or may not be members of my family) I know.  But you would never guess by the way she listens and tries to talk and responds to even whispers that she can't hear all that well.  Compare to Clarisse working on her reading skills when she doesn't want to ..."mommy its too hard" (insert best whine here)  or Cadence not wanting to pick up toys..."I can't do it all by myself, its too hard".  Don't we all love the excuse of too hard to get out of really trying to do something we'd rather not, or that is exhausting (laundry anyone?).  Now Reagan has every excuse to truly not try.  She really can't hear.  And yet she glories in answering questions correctly, in pointing out and naming pictures or objects (mommy, mommy...boy,  mommy, girl, mommy, horse) in trying and trying some more to say words not only to make a sound, but so that we can understand her.  Perseverance.  Reagan has it in spades.  And as I watch her determined little face as she carefully articulates a word and pairs it with a sign to ensure I understand her,  I am inspired to not give up because its too hard.

Tuesday, October 22, 2013

Hear Hear...

So.  Hearing test.  Somewhat met expectations.  This was actually because ENT won't see her without a current test and we can't get and aid without ENT clearance (and around and around it goes).  So we fully expected her left ear to perform poorly since it is the one that has permanent loss.  The unexpected was her right ear performing more poorly.  Her pediatrician thought that her tubes were both out.  The test indicated that the right one is indeed out, but the left appears to still be in.  And the right ear now seems to have fluid again so not hearing all that well anymore.  The irony is that it has kind of helped her because now her hearing is more balanced so even though she can't hear well, she can better track sounds.
  However we now need to find out what the ENT says about the fluid and whether or not we need to replace the tubes.  If not then we will be aiding both ears....so we wait for the next step.

Monday, October 21, 2013

Medical Update with a Little Perspective

Reagan saw her favorite pediatrician today for her three year check-up and to get the results of that dramatic blood draw the other day.  Everything looks pretty good.  Her spine is good so she can jump and tumble and ride to her hearts content.  No white blood worries, no thyroid worries.  Her vitamin D levels are pretty low so we will supplement that.  We had a funny moment plotting her growth on the chart because she has grown a lot in the last 3 months so I expected the doctor to be impressed and instead he commented on how she has dropped off the curve...guess there was a plateau sometime in the last year lol because this girl is getting tall.  The only hang-up came in the fact that the lab messed up (big surprise right?) her test orders and didn't run the test for Celiac.  So they are trying to see if they still have her blood to run it in order to avoid another draw...I'm not optimistic.  I refuse, however, to get too annoyed or frustrated.  After all this is just a small lump in the porridge.  Perspective....my friend is in the hospital for the second time this week with her son trying to figure out how to feed him.  They have been struggling to figure out what to do about a GJ tube or a J tube or all kinds of stuff I don't understand because I don't have to and none of the doctor seem quite sure what course of action to take.  So, yeah, I'm not going to complain too much if we have to go get another poke.  Speaking of which, they had to do a finger poke for anemia (also just fine) and this big girl didn't even flinch...just looked at the nurse with curiosity.
 Reagan is so dead calm and cooperative for all things medical.  I guess she is just used to it after three solid years of being poked and prodded.  Now for her hearing test tomorrow...

Sunday, October 20, 2013

Silly Girl Sweet as Sugar

Have I mentioned I love the age three?  The exploration, the curiosity, the silliness.  And when you combine that with a bonus chromosome the charm is almost unbearable.  I have to say....I love that Reagan has Down syndrome.  I really do.  It makes every single thing she does funnier, cuter,quirkier, and that much sweeter when she gets it after lots of work.  Life with Reagan provides a never ending supply of anecdotes and "squee" moments.  Among today's silly girl selections....alternately holding up red and green cards and telling Daddy "go" and "top"....getting seriously offended when we tried to move her from the table to the high chair at dinner (she is a big girl thank you very much)...playing "weeee" (with the dead remote) with Mommy and Grammy (she really thought she was doing it)...

asking to brush her horse before saddling her....showing Daddy where her helmet is to ride Sally....roasting her first marshmallow.

Saturday, October 19, 2013

Happy Birthday and Everyday Advocacy

We went to a little cousin's 2nd birthday party today.  Great party!  Rapunzel came.
 Reagan attempted to say Rapunzel (pun-zel).  I love taking Reagan to gatherings with lots of children of various ages.  She loves participating with the group.
 And when singing and dancing are involved (which it does when Rapunzel comes to the party)  she really gets going. :)
 Today's accomplishments included eating all her ice cream cake without wearing any of it,
playing ball, and voluntarily climbing into the bounce house (she has always been frightened),
 learning how to say Tita Anna (tia ann- ah) and typically charming everyone around her.  Can you say future self-advocate?  And speaking of advocacy....Tita Anna...Reagan is proud to have you on her side :)



Friday, October 18, 2013

Big Sister and a Big Example

Grammy and I had an extra special fun day today along with big sister Clarisse.  
We got to take our (therapy) doggies into her first grade class for a reading program with her classmates. 
 The kids were sooo good and enjoyed reading to the dogs so much. 
 And Clarisse had an extra sparkle on her face.  Such joy she took in telling all her friends at recess about Grammy bringing her dog Oreo Cookie. 
 And such fun all the kids had in getting the best of the teacher by already knowing the dog's name because "Clarisse told us".  Clarisse who doesn't say much of anything to anybody at school.
  And where was little sister during all this?  Watching of course.
  And doing what she does best (besides charming everybody in sight which she also did), copying.  She "asked" for a book too which she proceeded to "read".  The best part?  The big kids "helping" her read.  Sooo cute!  I think we'll have to do this again next month. ;)



Thursday, October 17, 2013

A word of caution: Entitlement vs. Discrimination

It is time to be straight up here even if I get burned because the truth is more important than being liked or popular.  So I ask you to please read then search your heart and your intentions and be honest with yourself on where you fall in this issue.  The truth is we all fail at some point and we all get sucked into a wrong way of thinking from time to time, but if nobody speaks the truth then we never catch ourselves and our society spirals downhill into self-indulgence and hedonism.  This centers around my least favorite phrase in the whole world...I deserve.  Or in the case of us mothers of special needs children it is they deserve.  Because truthfully, there is very little that we have that we actually deserve and very much that we deserve that we are spared.  We deserve a chance at life.  We deserve truth.  We deserve justice.  Our constitution here in the U.S.A. declares that all are created equal and have the rights to "life, liberty, and the pursuit of happiness".  And here is the key word that I think most of us forget (at least from time to time), pursuit.  What does pursuit mean?  It means we can go after it, attempt to achieve in it, not be held back from trying for....chase. Note that it does NOT say "life, liberty, and happiness".  That is on us.  We can be as happy as we choose to be in whatever circumstances God places in front of us.  There are many things we may want and that is okay, we are free to try and get those things, but they are not owed to us.  We are not...and here's another dangerous word...entitled to them.  Now we as the advocates and loved ones of children (or however the shoe fits) of special needs see that the world can be a cruel, hard place when you have a disability.  Actually the world is a cruel, hard place anyway thanks to that little thing known as sin, but it seems so much more unfair when your kid has to work harder just to learn to walk and talk.  So we fall into the trap of thinking that the world owes them a better experience.  That they should be able to do everything everybody else does in the same way, and if they can't then they should get something extra to make up for it.  This idea is a fallacy at its very root.  Every single person is different and has different needs, desires, abilities and challenges.  One size never fits all and not all of us can do or experience the same things.  And if one person can't do or experience what another can....this gets labeled as discrimination.  But it is not!  Discrimination is not when someone can't do or experience things based on their real situation.  It is when they are prohibited from doing things based on a perception or label.
And now I am getting to the specific situation that is at hand this month.  Disneyland.  They have changed their policies on how they help those with both visible and invisible disabilities and the special needs community is in an uproar over it.  Many people are screaming that it isn't fair and that Disney is discriminating against those with special needs.  I point back to the difference between what we want and what we deserve.  We want the smoothest, easiest, happiest day possible at Disneyland.  We deserve to not be turned away at the gates because of disability.  And that is pretty much where it should end.  Nobody is entitled to anything extra.  If Disneyland wants to provide a system to make things easier for those with special needs such as sensory issues and health concerns then we should gracefully accept and say Thank You!  If our child can't handle sensory overload then it is up to us not Disney to figure out how to handle that or else choose a different activity that is better suited to our situation.  If we say that everybody is entitled to a great Disney experience how far are we going to take it?  There are children who are severely immune compromised and cannot be exposed to germs (on of them very dear to my heart) who love Disneyland.  Should we tell Disney to shut down the park to everybody else and sanitize everything so they can go?  Of course not.  A Disneyland visit is simply out of the question with circumstances being what they are.  I understand that we all want that magical fun time.  Hey I like no lines as much as the next person!  But (I've said it in previous post about other subjects and it is important to remember in every facet of life) life. is. not. fair.  Happiness is what we make it.  We need to put our eyes and hearts in the right place and choose to make the most of what we have blessed with instead of complaining that we want more and claiming that if we don't get it somebody else needs to fix it.  So where is your heart?  Are you focused on what others should do for you?  Or on what you could do for others?  And that thing you want so much?  Do you really deserve it?  Or just want it?  It's ok to want.  It's ok to get.  But it is not ok to say that you are owed happiness or privilege.

Wednesday, October 16, 2013

Vampires, Photographers, and Exhaustion

I had one of those days today that remind me of just how very far we've come in the last three years.  Reagan hasn't yet gone in for her three year old check-up but will on Monday.  However before she can do that she has to go through a whole battery of tests first.  More than usual this year as a matter of fact.  So we paid our annual visit to the vampires today and typically she did present an easy to find vein.  That poor phlebotomist had to work sooo hard and was determined to only stick her once (partly because she was afraid she wouldn't find a second vein if she blew the first one).  Then Reagan's vein didn't want to keep the blood flowing long enough to get enough to perform all the tests that being run this time.  Reagan was a real trooper though...one tiny squeak when the needle went in and she sat so still for the looong time it took to get those three big vials of blood.  She is having blood work run for her CBC to ensure that leukemia is still out of the question and her thyroid levels are being checked.  Since she is turning three they are also checking for celiac, though I'm positive she's fine there.  I also requested her magnesium and vitamin D level be checked because I have suspicions about those numbers so we'll see if my mommy instincts are right.  After we were done getting blood drawn (which took sooo long because we had to wait and make sure it was enough before we left), we moved on to get some pictures taken.  Reagan had her C-spine x-ray done about 8 months ago to clear her for riding the horses, but it is usually done at 3 years old for better results so we are repeating it.  Again Reagan showed what a big girl she is holding perfectly still for all three films and so proud to have followed directions so well.  By the time we were done with the three hour testing saga I was ready for a nap (of course the multiple sleep interruptions last night by a certain 3 year old contributed).  I look back on her baby days when we were doing multiple doctor appointments every week with blood work and x-rays and specialists and echos and medications and pumping and bottles .....and I thought I was exhausted today?  We haven't been to the doctor in months!  Now to await the results of the tests....in the meantime....Disneyland seemed like a good way to celebrate a beautiful afternoon. :)
Did I mention I was exhausted?

Tuesday, October 15, 2013

Mama Fail...Forgiven

The biggest problem with having a 3 year old child who stands just over two feet tall, weighs just over 20 pounds and doesn't talk much is that it is very easy to forget that she is THREE.  Now, she doesn't forget she's three, and when I do she gets justifiably indignant.  Case in point...a couple of weeks ago we stopped in at Starbucks on the way home from school because Mama needed a caffeine infusion and the girls asked if they could get a treat.  The girls selected their sweets and we walked out clutching our pink bags....except for Reagan.  And she did not like this.  Now she at first thought that I was holding her bag but when she repeatedly point at it and grabbed for it with now sweets forthcoming she put up a good pout!  She knew she had been left out and she let me know that wasn't fair.  She was right!  I realized that just because she doesn't stand tall enough to see the pastry case doesn't mean I shouldn't treat her like I do her sisters.  So when we popped in after school today I made a point to lift her up and ask her what she wanted.

Yeah this girl knows she's big now.

Happy much?


Monday, October 14, 2013

Little thing, Big victory

Clear communication is something that we take for granted sometimes.  Most of us can speak and hear well. Or at least we've been able to hear well for long enough to learn how to speak well and figure out what others are saying (Grammy lol).  Reagan can neither speak nor hear well.  And the suspicion is that the lack of speaking well is tied to the lack of hearing.  Oh this mommy is so very glad that we are finally, finally moving toward getting a hearing aide!  We can tell that Reagan understands what we ask of her and that she has big ideas but no words for them.  That is where sign language has been so very good for her.  She likes to sign,  she is very clear that signs have meanings and she can use them to tell us things.  The only problem is she doesn't know as many signs as she has ideas.  We have been working with her on following instructions such as go get a diaper.  Many times she can't reach or open the drawer so she will start whining and sometimes pointing.  But today...ah today....she can up to me and indicated that her diaper was..er...okay she said "poopoo", and sure enough she was so I told her good girl for telling me and please go get a new diaper.  She wandered off to her room and in a minute she walked deliberately back up to me, looked me in the eye and carefully pounded her fist into her palm twice.  The sign for "help".  Oh how proud of her I was for not getting frustrated but rather using her skills to tell me what she needed!  And how proud she was because it worked and mommy understood and mommy was happy to help!  That skill...spontaneous, accurate communication of her needs is right there and she's almost reaching it.  I can't wait to see what she thinks when she hears how words are really supposed to sound.

Sunday, October 13, 2013

God's Camp

There was a place written about in Genesis where Jacob had visions of Angels.  He call the place Mahanaim, Two camps, because he recognized it as the place where his company and God's company met...God's camp.  
There is a place in Cherry Valley called Mahanaim Ranch.  My dear friend Joanne had a dream of a place where children with disabilities could come and ride and grow strong.   A place where people would come and find peace and be refreshed.  A place that would be God's Camp.  She bought this place and opened the gates.  And the dream has gradually become a full fledged reality.  Just to go there and sit is to be refreshed in your soul.  
To see all my children and their friends play and learn brings a smile every time.  
And to watch what Equine Assisted Learning has done for Reagan is astonishing and pure joy. 
 And to watch Austin and Dakota do ground work with the horses at the same time just completes the dream. 
video
I will write more in depth on exactly what Equine Assisted Learning is and what it does for children like Reagan and Austin and Dakota later.  But for now I just want to share what a special place Joanne and God have created.  A place that doesn't just provide therapy for disabled children but for anybody who comes in these humble gates.


Saturday, October 12, 2013

The need for a "Cause"

I have noticed something about people.  We need to be needed.  We need to feel important.  And very often, we need a cause.  This is particularly true when we run up against something scary...like and unexpected diagnosis of Down syndrome.  We unconsciously feel the need to prove to the world, our friends, our families....ourselves...that we are ok with this.  So we take up our banner and fight for, for, wait...what are we fighting for?  Acceptance?  Equality?  Fairness?  Justice?  All good things to be sure, but we don't need to make them our cause and spend all of our focus and energy on ensuring that the whole world line up and behave properly.  News flash.  That's not going to happen.  The world is a horribly unfair place.  Now I'm not saying don't stand up for right and for your child.  But, well, let me put it this way,  this girl
is my cause.  I focus on her.  Helping her grow into a capable, strong woman.  And guess what...when I accomplish that...she will change the world's view of her all by herself.  I don't need to jump up on a soapbox and tell the world how to treat her (though treat her badly and you don't want to see Mama bear!),  I need to surround her with loving, caring people who will always be there for her no matter what the rest of the world does.  Changing hearts and minds through actions one at a time will spread.  And see when I don't cover up my fears with a "cause" then I am modeling what I want others to see...Reagan is a gift just the way she is.

Friday, October 11, 2013

Reaffirming my Stance

I've been part of the special needs community for over three years now and I have learned a lot and my opinions and ideas on some things have shifted and evolved.  But political correctness and "people first" language is not one of those things.  I would like to share my own words about this from two years ago...



People Correctness
I don't *do* political correctness.  Because its, well, political.  And political isn't really about people.  Its not.  Politics are all about ideas, arguments, convincing someone your way is right.  So it stands to reason that political correctness isn't really interested in individual people, but in someone's idea of what is correct.  People are not all the same...as a matter of fact there are no two people alike.  So there is no one correct way of addressing people.  People correctness...that's what I do.  Speak to each person as an individual and out of love.  It really doesn't matter so much what you say as how you say it, if your heart is in the right place you don't need the right words.  Use whatever words you want to talk about my daughter as long as you to speak to her and of her with love and respect.

People Second
Do you know what People First language is?  I'd be willing to be a full 50% of people reading my blog don't know...and I consider that a good thing.  When you have a baby with Down syndrome you learn a lot very fast.  What it is.  What goes along with it.  Heart, thyroid, nose, ears.  Therapy.  And the proper way to talk about Down syndrome and people who bear the extra chromosome.  (Now I know I'm gonna shock some here)  I don't get it.  Why in the world do we need a set of rules about the proper way to talk about Down syndrome?  The theory is that it shows respect, but the way I see it requiring people to speak with "People First Language" puts the people second.  By making a set of rules that must be followed you are now putting more focus on words and language than you are on the human being you're supposed to be talking to or about.
By having a set of rules that must be followed in order for no offense to be taken you are going to make people so worried about saying the wrong thing that they will say nothing at all which really doesn't help with inclusion.  People first language basically has to do with grammar, and I really don't see how grammar can be insulting or demeaning.  It says that you should always put the person first and the diagnosis second.  Person with Down syndrome instead of Down syndrome person.  I really don't understand why its a big deal.  There are also rules about Down syndrome versus Downs syndrome.  And people get really uptight about it all.  I just have to fall back to what I said before...speak respectfully and in love and you can't go wrong.
The term Downs baby does not bother me.  That is what Reagan is.  And I don't want anybody to worry about us getting offended because they don't "know the rules".

This is what I had to say when I was a rookie and was first informed that as a special needs mom I was supposed to talk a certain way.  Now, if anything, the more I hear it touted the firmer my defiance of it becomes. I do not like it.  I find, still, that it does more harm than good.  Actually I am going to be a little blunt here.  Political correctness offends me and I find the idea that it is important where in my sentence I put the words "Down syndrome" to be silly.  If I followed the people first rules then I also shouldn't have written in my first sentence that "I have been part of the special needs community"...rather I need to say I am part of the community of people who have loved ones with special needs.  I don't have a beautiful daughter....I have a daughter who is beautiful.  It is cumbersome and despite that fact that we all want to make sure the world accepts our children as unique it will have no impact.  All we will do is alienate those who really do care because they don't care correctly.  We all have adjectives that define us (yes Down syndrome does define my daughter).  Some are good and some negative.  We all have to strive to live up to the good and overcome the perceptions of the negative.  That is reality 46 chromosomes or 47,  people first or adjective first.  Spread positivity (yes I made that word up) not negativity.  I will say this and say it again and again...speak in love and the words (or word order) do not matter!
Ok I'm getting down of my soapbox now.

Thursday, October 10, 2013

Shout Out

This is going to be a short post today.  I am working on something kind of important and weighty and want to take my time with it but in the meantime I want to give a shout out to Stacy Richards and her beautiful creations at Jubilee's Jewels.  
Those of you following Down syndrome media probably remember the little Chinese baby boy born first of the year who needed a family.  The good Lord not only provided him a wonderful home but the funding for it in 48 hours!  My heart just melted when I read Stacy's story and how they were led to Simeon.  And even more exciting (for me), they live only a mile from me!  Up close and personal!  If you want to be touched check out their story!  And check out Stacy's jewelry too...she is constantly supporting adoptions!  This is the beautiful piece I got her to make for me today and I'm all ready to get some custom pieces done for Christmas :)
I know these are repeat pics from facebook today, but I couldn't wait to share.

Wednesday, October 9, 2013

Wet Wednesday

Only in Southern California in October can you go from sunshine and gardening to dancing in the rain in 24 hours.  I love rainy afternoons.  And fall.
And warm drinks and coats buttoned up with hoods and scarves.  I gloried in today.
 Reagan wasn't so sure about till she put her hood up and discovered that an umbrella is pretty neat...it's like dancing in the rain without getting wet.  Silly girl.

Tuesday, October 8, 2013

Soaking up the Sunshine

It's supposed to rain tomorrow so we took advantage of the still fine weather and Daddy's day off to tidy up the garden.  While the grown-ups weeded and pruned the littles soaked up the last of the sunshine.
 Look at what big sister can do now!  Last time I checked she was still asking to be pushed every 30 seconds.


 Little sister wants to be part of everything we do.
Plants grow better when extra cute girls water them right?  We won't tell her that its supposed to rain and they didn't really need it. shhh.

Monday, October 7, 2013

Life (and Grammy) as Therapy

Reagan has been blessed with three years with a fantastic therapist (we miss you Elizabeth!)
And even though she has transitioned to the school district (or will as soon as we get medical stuff cleared up)
Fine Motor
and no longer sees her twice a week she has trained us all well in how to encourage Reagan to use her skills in real life.
Sensory
Gross Motor
 Reagan has also been blessed by a Grammy who paid lots of attention to Reagan's goals and has a fantastic ability to find fun ways to work on them.
Speech 
Social
 I had mentioned to Elizabeth as we were working on Reagan's IEP that she has never gone more than a week without therapy,
Cognitive
and Elizabeth astutely pointed out that with this family she hasn't even gone that long because we even turn vacation into therapy.