Feb 6th, 2011: Annelies's World of Opportunity Just Got a Little Bigger

From the first day Annelies came into our lives, I looked for opportunity for her (once I got past the self-pity part).  I read hopeful stories in blogs and on other websites from all over the world about what people with Ds can do and have achieved.  Via YouTube, I 'met' a very cool lady in New Zealand who lives on her own and has her drivers licence (when I saw that video I initially thought...wait, you are driving on the wrong side of the road...).  I 'met' kids who go to school and have typical friends.  On Face book I 'met' these 2 beautiful girls who were hanging out at Starbucks in Germany via a fabulous photographer (Conny Wenk-Google her, her pictures are a true treat) who makes it her life work to photograph kiddos with Ds.  I met in true life a beautiful 10 year old who attends public school in Colorado, and a just-21 year old who celebrated his 21st B day in style, in Las Vegas, where his Dad bought him his first shot.  I also met 100 beautiful children in Holland, in a book my Dad sent me, taken by a photographer who has nothing really to do with Ds, but was just fascinated by the beauty of 'our kids' and felt teh need to publicize this.  These images and real-life meetings gave me such hope for Annelies's future, and eased the 'freaked-out-ness' that I felt about the diagnosis. 
What also helped tremendously were the words of our Pediatrician who told us:  "Do not let this diagnosis lower your expectations for this baby.  She will talk.  She will go to school.  She will lead a full, productive, independent life..."  At Annelies's first physical she did not even want to write "T-21/Ds" on her chart. 
So of course there is hope, and there is the question of:  What are we going to do to bridge the gap, or as they are called in therapy, 'deficits' (also such a lovely word, but I am not worried that much about words.)  How are we going to get this beautiful baby from here to a relatively 'normal' life without being too drastic about it?  When I bottle fed Annelies those first months, it occurred to me that the bottle-nipple-holes were packaged and sold by age.  0-3 month nipples had small holes, 3-6 the holes became bigger, etc etc.  Because Annelies is a child of 'least resistance', I gave up nursing her after she discovered how easy bottle feeding is when they started pounding those bottles into her at the NICU (They were just doing this because low tone can partially help cause feeding issues with many kiddos who have Ds.  And I was still in the self pity phase of the whole thing so I went along with what they thought would be best.  I knew nothing about Ds, and was more worried about other possible health issues that were presented to me she might have because of the Ds.  I LOVED the nurses at the NICU and will forever be grateful to them, for giving us our start.  At any rate, here Annelies was drinking happily from her bottles.  I used lowest possible flow nipples because if she was not going to gain strength from sucking on a human nipple, she sure as hell was going to gain as much strength as possible from the fake ones.  And I never moved from the low flow.  The nipple I threw out just a few months ago was a lowest-possible flow nipple.  When I pumped for Annelies, I found I had to set my (hospital grade) pump setting higher and higher.  So I wondered about the 'wisdom' of the hierarchy (shall we say) of the fake nipple holes.  And I applied my logic (I may not have much, but I DO have logic and common sense, and they DO help get you somewhere sometimes!) and made that decision. 
Anyway, about 6 months ago I was told about Sara Rosenfeld-Johnson.  If you have a child or loved one with Ds, you have to look at this article: 
The Oral-Motor Myths of Down Syndrome

By Sara Rosenfeld-Johnson, M.S., CCC-SLP
Published in ADVANCE Magazine August 4, 1997
You can get to it via this link, scroll down to the bottom. 
Annelies had an evaluation today, and it was so helpful.  I will not describe all that we talked about, because my head is still spinning.  But in a nut shell, we have a set of tools and steps we are going to take that will help Annelies strengthen the areas in her mouth that wll help her eat better and eventually talk as clearly as she is going to be capable of.  SRJ gave a lecture last night for parents, and out of all the things she said that were so good, one thing that resonated with me.  That was the part about how such a large percentage of communication has to do with visual perception of a person.  What do people think about when they see a person with Ds?  Slack jaw, tongue hanging out (partially).  What do people think with they are presented with a person who looks like that?  Right.  Go figure.  Slam that door (to opportunity-jobs, schools, etc) right shut!  SRJ found methods to therapy that can be done at home to decrease this, and send out kids on their way to Oral Motor 'control' (for lack of better words).  Annelies and I had a 2 hour meeting with SRJ today.  I told her my thoughts on nipples and she told me I am "the perfect mom".  LOL.  She made me feel good, even though I am so far from being that (seriously, she was just being funny).  But she DID tell me that becausee if what I did, Annelies's tongue thrust is so mild, and she has a wonderful 'basis' to work from!  As I drove home, I was nearly in tears of hope and happiness.  I saw more doors open for my child, and I am so excited for her!

Jan 1, 2010: Marco Has a Girlfriend

Really never imagined it would go this way.  Also did not think it would happen quite so soon but alas, my first born has lost his heart at the tender age of not-quite-4.  Here is how it went down:  New Years Eve at my Mom's house.  Violet, a long time girl-friend of my Mom's, often indulges the kids with presents when she visits and she did not fail this time.  Annelies was already in bed when Violet showed up, so Marco got to open his present.  Not quite satisfied, he dragged (I say dragged because it was a LARGE box) Annelies's present over to me with a request to 'open Annelies's present, please'.  My Mom told me to just go on ahead, Annelies would not really mind if Marco opened her present.  He tore the wrapper off the box, carefully handing us each piece.  So cute.  When the wrapper was finally off, Marco's eyes became round as saucers and he grinned from ear to ear, because he was face to face with...an almost life-size doll.  We found out her name is Lisa (The box said "Lovable Lisa") and we sat her down on the couch.  Marco stood facing her, and looked at her out of the corners of his eyes from each direction, with a goofy grin on his face.  We were all astounded at this very non-autistic bahavior.  We told him to hug Lisa, and he did.  We told him to kiss Lisa and he couldn't do it quickly enough! 
When bed time came, Lisa had to come with.  Marco asked for Lisa to sleep in the crib that is in my Mom's guest room, and I would share the big bed with Marco.  (I asked him if he wanted her in the bed, he said 'No, Lisa in the crib').  We tucked Marco and Lisa in and told them good night.  An hour later, I went to check on Marco.  He had gotten up, turned on the light, gotten Lisa from across the room and tucked her in bed next to him, and fallen asleep (there is no way for him to reach the light switch on the wall from the bed, so the light was on).  Unbelievable, so very cute!

The next morning, Marco wanted to take Lisa with him from the bedroom to the living room.  I announced to my Mom that this was not just a one-night stand, this is the real thing!  To this day, Annelies has not been able to get anywhere near this doll, who happily lives in Marco's room.  (He does not insist on taking her everywhere, he is happy for her to just be there when he comes home.) 

Dec 31, 2010: Looking To The New Year

I did not make any resolutions because I learned early on that making a resolution for me is the quickest way to stop whatever habit the resolution required FAST.  So at the beginning of this month I took some time to reflect back over 2010 and if I had to sum the year up with one word, it would be: chaotic.   The biggest contributor to chaos in many homes would probably be kids.  So many things need to be organized for kids.  For Annelies, I tended to go with the flow of our therapists' schedules, fitting my work around them and not looking for better options (like, scheduling something for when Aaron was around).   With most therapists, we did not have a 'standing' appointment, so often at the end of the appointment I would have to work with them to find a good time/day for the next one.  Just thinking about this process made be break out in a cold sweat, because it is so hard to book an appointment with an already over committed therapist!  It also caused me to decline one hour of warm water therapy per week for Annelies, because I just did not think we could fit it in!   
Mondays were tough: 
1) Bring Marco to Rancho Cordova for school (1 1/2 hour round trip in rush hour traffic on the way there), 2) Be back home in time for ST with Annelies at 9:00 am
3) Annelies to Monday Morning play/therapy group at 1:30 am
4) Coordinate drop-off/pick up for Annelies
5) Back to Rancho for work
6) Marco up at 4:30, go to class at 6:30. 
By the way, I am sharing this not for sympathy reasons.  Parents (special needs and/or SAH or not) are Just.Plain.Busy.  Being that the kids at toddler age need more supervision and help doing things (potty, dressing, eating, etc) makes it even more so. 
So early December when I thought things over, I figured it would be a great idea to set up all Annelies's therapies for set, weekly times.  And I proceeded to call each therapist and do just that.  Within a few hours of talking on the phone, we now have a steady appointment schedule for Annelies!  Also, one of her Physical Therapies (Warm Water) she will mostly be able to attend with her Dad, and I love having him involved with her activities!  I also arranged with one f her therapists that she will either come to our house, or my Mom's house, depending on where Annelies is.  The appointment time will remain the same, I will just send one email at the beginning of the month telling her where to be.
One other load off will be that Marco will attend preschool and daycare in Loomis.  He will go to ST once a week, on either Tuesday or Thursday afternoon, with Aaron.  With this therapist, I arranged that Marco and Aaron will attend on the day Aaron does not work (he never works both Tue AND Thu, and I can let her know in the beginning of the month what days they will be there!).  As I was arranging this, knowing my desire for regularity and organization in the Fisher household, I did freak out a few times.  What if I can't do it?  But I kept at it, and voila!  Done! 
In the physical-organizational-sense, Aaron installed shelves in our little bonus room (we have an 8 X 6 lighted room at the back of the house for storage (or time outs...KIDDING!).  Up till now, we just threw things in there, and it had stacks and stacks of boxes and crap from our move (because when you move, you find all kinds of stuff you forgot you had.  Stowing it away in a dark corner of the house will actually create the illusion that it is still not there and we don't have to deal with it.  Right?!?  Anyway, when I looked at that room/closet with the shelves, I asked Aaron:  Where is the rest of the stuff?  He began laughing and told me:  It is all there, just easier accessible and much less messy!  This prompted me to clean out our coat closet, which is now Annelies's favorite place to open door and go in and play (there is now room for her to do so, and I don't have to be afraid that something may fall on her due to the way things were packed in there, too.)
Who knows, maybe all this organization will give me enough energy to do AMAZING things next year.  Just kidding, I am really just looking forward to a less-chaotic year! 

And I wish for you all the same; not-so-much chaos but LOTS of Love, Happiness, Health & Compassion in 2011!!!



Dec 14th, 2010: Something Nice Happened at Work Today

I never blog about my job or the company I work for, but today I am! I work at a large International Mutual Fund company, called Franklin Templeton, and have been there for 13 years in January (yikes)! Company leaders make it a point to encourage employees to volunteer in their communities and a lot of my colleagues do just that, in many different organizations; be they related to environment, people or animals. I love that aspect of the company. In 2006, a company leader who always made it a point to be involved with different good causes passed away, and an annual award is given out in his name to an employee who demonstrates a high level of involvement with local volunteerism. This is a very prestigious award; the person who wins it is given $10,000 for the organization they volunteer with.
Today, at the company-wide meeting with at least 3000 attending from various locations all over the world, the 2010 recipient was announced. This year’s winner lives and works in Hong Kong, and donates his time to a local organization that works with those who have Cognitive Disabilities. I can not begin to describe how this made me feel.  When the award was given out last year, I hardly paid attention because I assumed it would go to a person who supports a cause that was a lot more ‘glamorous’ than one for people who have cognitive disabilities (oh, me of little faith).
Up to not long ago (unfortunately still happening in parts of the world), those with cognitive disabilities were mostly ignored by society. Thinking about those who have a cognitive disability (or having a baby with one) scares the crap out of many people, and it is easiest to push any such thoughts to the back of the mind, and hope it doesn't happen to you (at least, that is how it was for me before Annelies was born.  I do not assume all feel the same way I did...). In front of a huge audience of people, a young man who donates his effort and time to a school where people with cognitive disabilities come to learn, play and develop to their fullest potential was put in the spotlight in front of several thousand colleagues across the globe. I am so thankful this large group of people got to see that people like my daughter are absolutely worth the time of day and so much more. The moment I realized what the organization this person volunteered for was all about (they showed a video), tears came and I felt so good at the same time, so validated in a way, on behalf of my daughter, her friends (the ones she does not know she has in Hong Kong and all around the world), and us parents. (Thankfully I was in a huge auditorium, and I am a good silent crier!) I had no idea this kind of thing would evoke such feelings, and I never, ever expected these feelings to happen at work, of all places!

Dec 12th, 2010: Annelies Cracks Me Up...

...Her room looks like we had a toy drive, thanks to her many friends who visited her birthday party.  Yet THIS is what she chooses to play with.  (She goes all the way up the stairs, finds the cupboard they are in, opens it and digs them out)... But...she is wearing the pajamas Gracie gave her!  And I was able to put one of Susan and Charity's flowers in her hair earlier today! 

Nov, 2010; Almost 2 Years!!!

Annelies turns 2 years old in less than a month!  Thinking back it feels like a lifetime has passed in a short time.  And then sometimes it feels like her birthdate was yesterday.  I don't spend that much time looking back, but I marvel sometimes at how naive I was when Marco was born.  Ds was a concern of mine and when I first laid eyes on Marco I said to Aaron:  "He is OK, He is OK," meaning: "He does not have Ds".  Of course, I did not know the first thing about Ds, except in my mind it was a life-ends-as-we-know-it diagnosis and everyone who had to deal with it were to be pitied.  Oh, how little I knew.  When Annelies was born, there was not that "She is OK" feeling.  Oh no, we knew right away!  I do not fully know how I got through Annelies's Birthday but for grace, family members and a couple of very good friends who visited.  Rereading that post is interesting, it brings back a lot of memories.  I am glad I went through the whole experience as well as I did, it makes me feel good.
The first year of Annelies's life, it almost feels like I went on some kind of publicity tour to let the world know WE WERE ALL RIGHT.  I felt the need to do this because the thought that anyone might feel any kind of pity for us made me cringe.  I started the blog, took and sent pictures, wrote letters, took and sent more pictures and even took Annelies to Colorado and Holland.  I had a great time on these trips, but there definitely was this frantic need to show as many people as possible that we were fine.  Better than fine.  Interesting, isn't it?  That need is much less now, I think for the most part I am aware that people either know/believe we are allright, or they don't and it really should not affect me that much.  Most important is for me (us) to live our own lives and focus on ourselves.
One other funny thing I went through in the first few months was when we were told how cute Annelies was, I felt the need/urge to tell people she has Ds.  Almost like I was afraid that people might think I was in denial about it, or like I felt that people might retract their comment if they knew, or not have made it.  Crazy!   I never did mention it to people unless I was asked or they made a comment about it first, but it was always on the tip of my tongue.  (Reason I did not say anything was that I wanted Annelies to be admired just like any baby, exactly the way she deserved).
Also during that first year came Marco's diagnosis.  Since that diagnosis was the culmination of almost a year of denial, it really rocked our world a lot more than I admitted at the time.  I continued to go strong and we got through the Holidays and some really busy times at work (implementation of a major system we had been working towards for < 5 years).  In January/February timeframe, I kind of crashed. 
I am fortunate to have an AWESOME support system in my family and friends.  I met so many wonderful people I would never have met, and am grateful for this every day.  My world has expanded.  So funny, my feeling about this would have been that parents of kids who have special needs live in a small world, with all their focus on their child.  I guess it COULD be like that.  But not for us.  We enjoy our kids but learned to take time for our selves and each other.  Heck, I experiences my first "Girls Night Out" this summer, and would never have if it were not for Annelies (or it may have taken longer).
It hit me the other day that my concerns for my kids are not that much more than those of parents of typical kids.  Annelies and Marco are doing so well, have made and continue to make so much progress, that I think they will be just fine.  They are kids, like all other kids, their diagnoses such a small part of who they are.  I tend to forget about it, I don't live with it every day.  Yes, we will still have the IEP's and don't get me wrong; they stress me out.  Maybe because they are what draw me back into the reality of the "special needs" that have to be dealt with.  Or maybe because I am just enjoying my kids and not counting every word Annelies now knows, how many steps she took today, or how many words are in the sentences Marco speaks and how much he can count.  Hopefully, in time, that will become less.  At any rate, We are happy with our 2 sweet, happy, astute, adjustable, compassionate, strong, cute kids!

November 14, 2010: Our First Photoshoot With Both Kiddo's

Here are a few pictures of the kiddo's taken by a friend/colleague of mine who is exploring the "world of photography", trying to see if it is something he would like to pursue.  Annelies was recovering from a cold and Marco was about to get one (I was not quite aware of that yet, realized that only in hindsight).  So patience for both of them was fairly short.  Still, Edwin took a couple of really cute shots that I wanted to share with you all!  Enjoy, I will write a little more next week.  Have been working on a paper for school and requirements/documentation for work so have not had much extra energy for writing!

Hugs!!
Debbie & Co.