Friday, December 31, 2010

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!!!

Tuesday, December 14, 2010

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!

Sunday, December 12, 2010

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! 

Tuesday, November 16, 2010

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!

Sunday, November 14, 2010

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!

Debbie & Co.

Tuesday, November 2, 2010

Nov 2, 2010; Halloween!

This year, Marco got to go Trick or Treating for the very first time.  Initially we were wondering if it was even a good idea or if he would catch on to the idea.  What were we thinking?  Of course he caught on.  It took less than 3 times, and he proudly walked up to the doors, knocked or rang the bell and said: "Trick or Treat".  I am pretty sure Marco will probably not remember this night, he is only 3 after all.  He will see the pictures of course.  But I know Aaron will remember forever the first time he went T or T with his kiddo (Mom and Annelies stayed home to answer the door...Can't disappoint the neighborhood kids!!!)

My 2 favorite Firemen!!!

Verrrry tired afterwards!

Saturday, October 23, 2010

Our Vacation: Part II


Marco enjoyed going on small hikes.  Can't wait until Annelies hikes with us, it is the best way to see nature!

The following pics were taken from "Going to the Sun" road.  They do not do the beauty justice...

We found some horses in the grass near our camp...

Glacier National Park- Southern edge of the park.  We were not even IN the park yet, and it was beautiful!

Marco made friends at the camping lodge...

Our little traveller :)

Take this, big ball of twine!!!!

Loved this!

Saturday, October 16, 2010

Oct 16th: Monica and David...Saw it, Processing it, Some Thoughts

Like most parents of kid's who have that extra chromosome, I have been awaiting the release of the film "Monica and David" for about a year now. Trailers I saw until now seemed very hopeful, it was about a couple who have Down syndrome who fell in love at one of their classes (Life skills or something like that), and were married. It follows them for the first year of their marriage. Here are some thoughts. Random, as I am still (like most, I am sure) processing like crazy in my mind...
  • Monica is about my age, my generation. When she was born, the general advise was for parents to give up their children who had Ds. Her Mom did not, decided to raise her and ended up doing so on her own. Marriage broke up. Same for David's Mom, but I have a feeling David is a little bit younger than Monica. This is positive to me. Here is where these Moms were pioneers for their children. These are the Mom's who started and continued the movement, and I am grateful to them for that. When Monica went to school, I am sure there was NO inclusion to speak of. Imagine what she could have learned if there was? She most certainly did not come across dumb, I actually was amazed at how smart and poised she is. She is just naive (and I do not mean this in a bad way, it was just thst she was not exposed to things!!!)
  • Monica's Mom said that because Monica did not go to College and does not have a car, they were able to afford a large wedding. I like that they did this, they gave Monica and David a wonderful day in the sun. It was a gorgeous wedding, I hope to be able to provide my kids that one day*, too.
  • I am NOT going to give up hope for Annelies to go to College. I think where it comes to Down syndrome and other special needs, there is a huge collecive changing-of-the minds that takes place over a long period of time. Where 50-40 years ago parents finally believed (and fought for the belief) that their kids could live at home with them, 30-25 years ago parents started fighting and are making headway to full inclusion in schools. Technically, "Full Inclusion" is now a reality not only in the US but also in other (Western) countries). But it is not the same from one place to the next. We are lucky (or were we smart? I still think back how funny it was that we both wanted to live in Loomis because of its school district at a time we did not even want kids, and thought we would never have any. Funny!!!) to be living in an AWESOME school district.
  • Monica's and David's Moms addressed a HUGE paradox, and I admire them for it. They both said they feel an absolute need to protect their children from the outside world. It was plainly evident that David would be totally up for working at Publix, the local supermarket. His Mom does not want him to, and he pretty much surrendered to her desire. When the time comes, I hope to be strong enough to allow my kid to do what she feels she needs to do. Both Aaron and I had jobs as young teens, and I would love it if my kids do something similar. We both had the drive to be independent, and I want to instill this need in the kids. Yes, we will ALWAYS be there for them, like my parents are there for me right now! Bot by god, I will do what it takes to give my kids the tools they need to make the most of their lives, 'special need' or not.
  • There is NO DOUBT there will be bullying. And it will SUCK. And I will want to stand up to the bullies to protect my kids but I won't be able to (without subjecting my kid to more of it). I was bullied when I was younger to. I read statistics that nearly EVERYBODY gets bullied at some point in time. It appears to be a part of life, and I will NOT be able to protect my kids from it. What I can do, as a parent, is help instill a healthy sense of self, a good feeling of confidence that hopefully allows my kids not to take those things said by bullies to heart. That will allow them to value their real friendships. Monica's mom gave a HUGE message for us parents of young ones out there, and I paraphrase: We, the parents of our kids, are the ones who TEND TO HOLD THEM BACK THE MOST because we think we are protecting them. Very profound. (I know kids that did NOT have special needs that were protected by their parents so much to the point there is no way they could buid an independent life. It happens, not only to those in the sn community...) I applaud this lady for being able to step back and take an objective view. She is a link in the chain to progress for our kids, and we are the ones who have to continue building that chain, and breaking down the "world's" expectations.
  • So yes, I was dissappointed in parts of the movie, but I have to keep in mind the genertional differences. This made me see the positives. We are all here to learn. I like to believe that we all learn from the generations before us, and the generations after us will learn from us. That was what I took away from it...



Friday, October 15, 2010

Our Vacation, Part 1

Here are some pictures from the trip we took in September. This part covers Idaho and Yellowstone. Enjoy!!!

OK! Ready to hit the Open Road!!! There was NO ROOM for anything else in my car. Probably a good thing it broke down when it did, the rental car was pure luxury!Coffee break somewhere (I think it was Battle Mntn) in Nevada.

Little Hiking guy...

Shoshone Falls, Idaho (I am amazed at how beautiful Idaho is!)

Marco was impressed at Shoshone Falls, too.

Little guy hanging out at the campground (before the snow.)
We HAD to go see Old Faithful!

SNOW In September! How awesome! (Not so awesome when you wake up in a tent though...)

Wading elk, we saw so many animals in both parks!

Mama and Papa

Wednesday, October 6, 2010

Oct 6. 2010: Will You Step Up with Us?

Dear All,

The day Annelies was born one of the nurses on my floor made a connection between me and a Mom in the room next to me. Kathy’s 3½ year old son, David, has Down syndrome. She and her family had traveled the road we were about to embark on, and was able to tell me (along with many other things) that “IT WAS GOING TO BE ALL RIGHT”. She was there for me when I needed to ask questions as I came to terms with the diagnosis in the weeks after.
One of the Down syndrome Information Alliance’s main objectives is to ensure information is delivered to the right persons at the right time in the right place. DSIA organizes community outreach events which allow families living with Down syndrome to connect with each other. During these events, local siblings of kids with Ds meet each other in smaller groups and provide each other support. Parents meet in smaller groups (based on their children’s ages) and are given information and encouraged to share information about education, therapy, and other important issues. Educational events are organized where key-note speakers come and share pertinent information with parents about development, different therapies and research results.
One of the main objectives (my favorite one) of DSIA is to do what Kathy did for me that day; be there for new parents to answer questions and give support where and when needed. It would be wonderful if every family with a child who has a Ds diagnosis had the opportunity, when ready, to meet one of the parents who has been down this road to ask questions, someone who can be believed without a doubt when they say: “I have been in your shoes.” DSIA is working on implementing a plan that will allow for such connections.
The face of Ds has evolved (matured, in my opinion) over the past 50 or so years. With each generation, parents and teachers discover that Ds is not the main ‘thing’ about a person. Persons who have Ds are more like others than not, and also very different from one another. More and more, people who have Ds are actively involved in society; attending mainstream schools and figuring out what they enjoy doing, pursuing careers and eventually living independent lives, getting married and starting families of their own. DSIA is here to ensure parents and families are given information they so desperately need, hope at a time there seems to be none, examples and inspiration.
“SUDS” (Step Up for Down syndrome) is an annual fundraiser that enables DSIA to gather funds so they can continue services within our community. We would be honored if you would like to join our team at SUDS on October 17th at 10:00 am. We also know that time is limited for many of you, or you are not in our area, so there is the opportunity to donate to Annelies’ fundraising effort for DSIA. There is absolutely no pressure, I am not crazy about asking for money and only do so when the cause is important to me and those around me. I thank you from the bottom of my heart for reading this far if you have, donation or not.

Please use this Link to support Annelies’ fund raising efforts.

Please use this Link to join our team.

Warm Regards,
Debbie and Annelies Fisher

Wednesday, September 22, 2010

Sept 21, 2010: A Short Story

I wrote a very short story, imagining myself at a future event in Annelies's life. I am well aware that her life will probably not go the way I imagined in the story, and I most certainly make it a point to live in the present with both of the kids and not even worry about the future. But many hopeful articles, pictures, stories and video's as well as the awesome progress Annelies keeps making has allowed me to fantasize a little bit about the future. Who does not have dreams for their kids' futures? All that said, I will allow my kids to develop their own interested and not push them into the things I (or my Husband) likes and keep them away from the things we may not care for. Here is the story...hope you enjoy...

...As I sit here waiting for the music to begin, I marvel at the fact that out of all the things I dared hope for my daughter in the past 23 years, this was the biggest. This is the event I hoped for but did not want to hope for so much that I might be disappointed. This is the event I wrote off on the day she was born. One of many, come to think about it. This event is one additional step she has taken to become a person as involved, as part of society as anyone could ever be. This event is 20 years in the making.
On the day Annelies was born, I thought I knew a lot of things. I thought I knew she was not going to be going to normal schools, let alone College. Ruefully I mentioned to one of the NICU nurses that I would not have to put money away for College for this child. (I have a kind of sarcastic, dark sense of humor). I thought I knew she might even be oblivious, that for sure I would not have any kind of ‘normal’ human contact with her. I thought she would be forever a child, which could be cute when she WAS one, but not very cute as she progressed through her teens into adulthood. On the day she was born I thought my life as I knew it was over.
The first 12 hours of her life, I was not really mentally there. I was dealing with what I thought was some kind of punishment, karma. What had I done to deserve this? Now, 23 years later, that day is a fog, I do not remember much about it at all. One thing I remember. Around 3 am that night, I went down to the NICU. I asked to hold Annelies. The NICU nurse could hardly contain her excitement; here was a mommy ready to bond with her baby. I held Annelies and rocked in the oversize rocking chair next to her crib (I still remember how comfortable those chairs were, you could just kind of sink into them, something my sleep-deprived body was grateful for). Many thoughts went through my head; I cannot tell you what they were. Suddenly, Annelies opens her eyes and stared into mine. It occurred to me at that moment that I was staring in the eyes of a person much, much wiser than myself. I got a message; I don’t know from whom, maybe it was Annelies herself? Maybe god? The message is this: “Everything Will Be OK. Trust Me”. The moment lasted seconds but will be etched in my mind forever. Its profundity still makes the hairs on the back of my neck rise when I think about it.
Throughout the years, Annelies has grown up to be a person with a strong sense of who she is. A big part of who she is, is fiercely independent. It was evident to us even when she was little; always exploring and chatting to herself and her environment, always testing things and bossing her dolls around. She would get irritated if something did not work her way, but would always insist on trying it. On the other hand, if therapists or other family members engaged Annelies when she was not ready for it, she would let it be obviously known. School opened up a world for her, she loved being in her classes. She loved the social aspect of school and was (still is) part of a wonderful circle of friends both typical and with Ds. Her natural curiosity gave her the impetus to put that extra effort she needed to put into most of her class work, getting very decent grades and being able to be mainstreamed with her peers in most classes. Like her Mommy, she did not ‘get’ and was not good at, math. So we got extra help for her (her Brother was a great help with this) and she was able to ‘survive’ this hurdle. She actually ended up doing better than I ever was at it!
One place Annelies was able to be without any prejudice (at least before people knew of her) was at horse shows. Like her Mom, Annelies was born with a “horse gene”; she loved horses from the very beginning. One of her first adamant demands was that she be put on a horse, and I had to let go of all my good intentions to not let either of my kids ride until they were at least 8 years old (it is a good idea for kids to have the ability to empathize since they are working with a living being after all, and I advocate the good treatment of the horse to be a priority.) Annelies wanted to be on a horse (she had seen me ride) and once she had her first taste of riding, she did not want to stop. We found her a pony, nicely trained. The pony was nice and stout so Mom could get on and fine-tune her from time to time. Annelies learned to ride and take care of the pony at the same speed any child with interest in horses would have. She took her first lessons with my trainer. When Annelies was on a horse, with her helmet on, no one saw Down syndrome. They saw a young girl who displayed a fabulous partnership with her horse, garnering a number of successes at local shows. Yeah, you should have seen the judge’s faces as they saw her without a helmet, hanging around the show grounds. She received many compliments, and had a lot of ‘fans’ (the biggest being her 2 sets of Grand parents, on both sides of the ocean.)
When Annelies was 3, we started play dates with a local mom and her son. Annelies and this boy developed a deep friendship; they were crazy about each other from the beginning. Even though he did not attend the same schools, this friendship lasted and blossomed into a romance when they reached their teen-years. Annelies always had a date for her dances at school which I loved…I never went to any of them.
The music begins to play. I glance at my family, friends and my ‘Sisters’, the ones who have been here for me my family through the years. My Husband and I squeeze each others hands in part nervousness, anticipation, excitement and a little bit of melancholy. Today, our little girl flies the coop. I look at Annelies’ husband to be, and then focus on the back of the aisle. There comes my Daughter, ready for a new chapter in her life.

Tuesday, September 7, 2010

Sept 7th, 2010: Road Trip with a Delay

Yesterday was the big day! We were so excited to embark on our first big Road Trip with Marco! Annelies is at Grandma's house, we decided it would be a bit too much for her. In light of all that happened last year we also decided that it would be great for Marco to have a little alone time with us. So we hit toe open road! And then...the car started doing weird things. It felt like a fuel filter problem first, but then it became quickly evident that it was the transmission. By this time we made it to Reno, and I am GLAD that was where we were. Pulled over into a parking lot and called AAA. Tow truck guy came out and towed us to a transmission shop, which was closed due to the Holiday of course. So the tow truck guy (really nice guy!!!) took Aaron to Hertz to rent a car and Marco and I checked into the hotel next door to the transmission shop (how convenient!). Aaron rented a cool mini van, transferred all our stuff from the car into it (a lot of room!!!) and we went to early dinner after that. Tomorrow morning (oh, guess that will be this morning) we will check the car in with the transmission shop and go on our merry way. On the way back we will pick up my car (we were going to pass through Reno anyway, so it is not a detour. Just a small detour in our finances but these things happen!)
We are going to Yellowstone and Glacier National Park. Marco and I can not sleep (probably from all the excitement today) so we are in the hotel computer room, there are 2 computers. Marco is watching Blue Men Group on the other computer. It is teh only thing he will watch on a screen (he does not watch TV-not interested). He always asks for Blue Men Group when he sees a monitor. I do miss my little girl, but am focusing on having a good trip and seeing some beautiful sights neither Aaron or I (or Marco of course) have seen yet.

Saturday, September 4, 2010

Sept 3, 2010: Big Boy Bed and Surgery for Marco

The other day, Aaron asked me if I thought it might be a good idea to remove one of the rails from Marco's crib. I told him to go for it, so he did. Marco had an absolute blast that first night. He was sooooo excited, that he could not go to sleep. It was SUCH a big change for him. That first night, he only came out of his room ONCE! We were really surprised and happy! Next morning, boy, was he ever tired. I figured for sure he would sleep well the next night. Wrong!!! The next night, Marco came out of his room, oh, about a million times. We lost count as well as our patience at the end (just a little...). But we hung in there, and eventually Marco went to sleep. That was the end of it, he now sleeps in his Big Boy Bed all by himself, he handles his new freedom like a champ, only comes out once in a while. On weekends, he does get up first and insists in opening all our doors and turning on all the lights just to make sure we are all up. So cute! I love that we took this big step to independence for Marco, and he did too! Soon, we will go shopping for a twin size bed for him with a good mattress (those crib mattresses have no support whatsoever).
Marco has been diagnosed with an inguinal hernia, and needs surgery. Luckily, it is a routine surgery, so nothing to worry about. Personally I have never had major surgery and it is weird to me that I have to send my 3 1/2 year old to the Hospital for one! (Part of me thinks: My gosh, these kids have been through so much already, is this really neccesary??) But it is, and in the grand sceme of things, this is relatively minor.
Marco and I met the Urologist who will perform the surgery, and I immediately liked him. Marco warmed up to him also, which is a small miracle for my very suspicious child (especially in an exam room, he is NOT a fan of exam rooms.) Marco will have his surgery at the end of October, and it will be out-patient, which means we can take him home soon afterwards, he can recover at home and will probably do so within days. I have several friends whose children had surgery lately (Major surgeries, nothing like this) and the kiddo's recovered like champs.
Probably to me, the scariest thing about surgery is the aneastetic. People have different reactions to them. But we already crossed that bridge last week when Marco had an MRI (on his brain) done as part of a study at UCD MIND institute. He went through that very well, just groggy for most of the day. Glad we had that experience, so now we know what to expect.

Monday, August 23, 2010

Aug 23rd, 2010: Back To School

Most of you may think I am talking about kids. But this is about me, and my kids are not quite of school age anyway. Today, I went back to SCHOOL! Scary! I went to Sierra College way back when, and finished my BA at UNC in Colorado in the early 90's. Totally clueless about what I wanted from/in life, I got a business BA (International Relations) because I thought that this major would help me in 'the corporate world' where I figured I should make my living. I really did not have the creativity/guts back then to think of anything else (my true interest was in Psychology...I had a love affair with this subject by taking all the undergrad classes in it I possibly could without extending my time in College -and racking up more student loans-), so I did what seemed 'right' to me at the time.
I did have an interest in my major, and did very well in College. I also was lucky enough to meet Aaron there. And, my first job out of College was even a little 'international' ish...I did customer service for international sales offices for the company I worked at. It was a good job, but all the other folks I worked with did not have an international relations degree, some did not have a degree at all, and they were all about as (or more) successful at the job as I was, so I can not say that my major actually HELPED. But...I was happy to have had the "College Experience". This experience ended when I mailed my last student loan payment while I was pregnant with my first child. All that said: I would do it again!!!
But now I am going to study what interests me, and who knows where it will lead! For some reason, I thought that a Bachelor's Degree would be all I would ever do, I would really not go to Grad school because I was not Grad school material. Whatever the hell THAT means. I just did not see myself doing it, really did not think I could for some interesting reason. (No one in my direct family went to college, both my parents went to trade schools. Both were successful at their chosen careers. My older Brother became wildly successful in his field just by being creative and using common sense. Both my younger siblings -early 20's- are in College). Anyway, I thought that in order to 'do' something with a Psych degree you had to at least get a Master's, and since that did not seem to be in my realm of possibilities, I choose to go with a Business degree. So funny, because many people I know have...Psychology degrees!!! (So, my advise to anyone going to College would be: Study what INTERESTS you. Do not even worry about what you use your major for). But I digress. So, now I am taking an undergrad Psychology class at the local Community College. Gotta start somewhere. I hope to be able to continue and get a Graduate degree. There is so much to look at, so much to research. I love data, and statistics, and researching. (That is the reason I am good at my current job...there is a LOT of data involved there...). We will see what happens, but for sure this time I am not going to let myself be limited by what I think I should or can study. I am enjoying it so much more now because I am doing what interests me.
For those of you who ask if I regret my earlier path? Heck no! Look at where that got me, I would have never met Aaron, and I will always cherish the college experience I had! It was probably the right thing for me to do back then. I think we all get where we are going by taking different routes. Some routes are very direct, some are a little more de-toured. Turns out my teacher actually went back to school in her late 30's and got her PHD 4 years ago, in her late 40's. There is hope for me yet...

Monday, August 16, 2010

Aug 16th, 2010: Camping Pics!

After 10 years of vacationing in hotels, the Fishers went CAMPING! We went with a couple of families to a large communal-type camp ground and had a BLAST! Here are some pictures...
Some highlights:

  • Sleeping in a NEW tent
  • Getting beyond dirty and no one cares!
  • Playing with a huge styrofoam plane
  • Eating outdoors
  • Wonderful friends
  • S'mores and great conversation by the campfire

Saturday, August 14, 2010

Mid Aug, 2010: Almost A Year

Hard to believe almost a year has passed since we received Marco's diagnosis. SO many emotions, thoughts and feelings made this past year interesting but challenging. Very challenging.
I've been asked which diagnosis was the most difficult for me, so sometimes I reflect on each of them. There is no easy answer to this question. I look at these diagnoses as part of who my kids are, even part of who Aaron and I are, because each one sent us on a road to self discovery we would otherwise never have travelled. But in no way do they DEFINE any of us. Marco and Annelies are kids; they enjoy their lives, have good days and bad days, quirks, sense of humor, favorite toys, foods and people like all children.
Annelies's diagnosis was like the proverbial thunderstorm out of a clear blue sky so to say. There was never a time we could really deny that she had Ds (I tried for a couple of hours on the day of her birth, but quickly got past that to allow me to deal with all that came with it).
I like to believe I am a realist, but with Marco I allowed myself to be in denial and postpone the appointment that eventually would lead to the diagnosis. I sometimes think: "Oh, if I had only done it sooner..." but then stop myself. I don't want to pave my road to the future with self-blame. A word on denial: I learned it takes too much energy to stay in denial too long. Denial plays a certain role in self-preservation though. When we allow the grief cycle to do its thing, there is a place for denial. I have since heard from friends who know people who have kids who show definite signs of Autism, but don't do anything about it. It can be possible to not do anything if the autism is mild, I guess. If Marco was born in the 70's there is a great chance he would have not gotten this diagnosis, and eventually would have been OK (if not a little different maybe, in behavior). But I think the feeling that 'something seems wrong' has to eat away at those people. I hope they find the strength to deal with it, for the sake of the child and themselves.
I hold dear the memories of both my childrens' births. I had one experience with Marco that I did not have with Annelies, that is a 'typical' birth and new-born experience. I thought Annelies's diagnosis was a punishment towards me, bad Karma (or whatever you want to call it) coming my way for something I did wrong. For a few moments (hours) I thought my life was over, that I would never be happy again. That life with Annelies would be a cross to bear. Of course I realized that this was not the case, but that she was (and is, in every way) such a blessing. Both kids are.
Overall, I think the Autism diagnosis was probably the scariest one for me. I feel that Autism can look so much like an 'invisible' thing that takes over a child. Behavior is distorted, and communication lines are broken (or not established), making it difficult or impossible for the child to tell parents what is wrong. I was also afraid of it 'getting worse'. What if we woke up one day and Marco was like Rainman? Or completely inable to comunicate? What if Marco freaks out in the supermarket and everyone will look at us and think I have no control over my kid? And probably my biggest fear: What if other kids look at him and wonder what the heck is wrong with him? Think he is different, weird? Many thoughts went through my head. But once Marco began his therapies, he also started to speak more and show so much improvement. His communication gets better every day, he for sure can tell us what he needs/wants. He is now used to having a little sister around who wants to get into EVERYTHING he does, and is dealing with that probably like any older brother (from what I hear from my friends). I am no longer afraid that his progress will halt, I know that he will continue to do well.
One note about my biggest fear: I am sure that kids notice Marco is different. But the ones who can see past this and still be his friends, will be his true friends. The ones who don't want to be with him because he may act different...well, Marco would probably not want them to be his friends anyway. I guess this will be the same for Annelies. Maybe that is one of the biggest gifts these diagnosis will give my kids. They will know who are their true friends.

Saturday, August 7, 2010

August 6th: Physical Therapy for Annelies

It had been a while so it was time for me to freak out once again about one of my kids' development. This time it concerned Annelies, and the fact that her friends seemed to be able to climb up stairs where Annelies had not yet done so. In her last IFSP we finally were able to add PT (as well as speech) so I was happy for this. Now Annelies gets ST, PT, OT and general Early Infant Education as well as a weekly play-group. She has a packed schedule. Our first visit with the PT was...uh...interesting. The PT concluded that Annelies is very stubborn, and has a very strong will (tell me something I didn't know, lady). Although this is a wonderful thing that will serve her later in life (with some serious guidance), it makes her less 'mallable' than other kiddo's, sometimes making sessions with therapists more challenging.
I shared my concern that Annelies can not crawl up the stairs, nor does she seem to have any interest in it. I also shared that this concerned me because her friends seem to be able to climb up stairs verrrry well. One time I found Annelies on the 4th step and kind of freaked out. Maybe THAT was the reason that she doesn't do it, since I really never freak out around the kids that much (my freak-outs only happen inside my head...).
She asked me if anyone had addressed "motor-plannimg" with me. HMM, that was a new term for me (so the answer was 'no'), and another thing to freak out about. (I think one of the reasons I have my 2 kids is to teach me a lesson about not worrying so much- so far it has not really done the trick though). Anyway, since motor planning was not brought up to me, and I thought that the fact that Annelies may have trouble with it made me worry that maybe she was more behind than others, and that she may be less capable than others physically and cognitively. But as I was speaking more with the PT, I kind of started thinking that Motor Planning is a challenge for many kids with Ds. Maybe it just means they need to be SHOWN what to do, what the logical progression of movement is for, say, standing up (one hand on table, second hand on table, on one knee, on other knee, on one foot, on other foot first and eventually one hand on floor, then foot, foot). Same for crawling up the stairs. So we showed Annelies how to climb up the stairs. She resisted when we insisted on her getting onto her right knee (she wanted to just use her right foot and not her knee at all, but the PT said she had to get on her knee first). But she got on the first flight of stairs and then went towards the second, so she climbed the whole way!
Next morning, Aaron was alone with Annelies. He was in the kitchen, and heard thump thump in the upstaris halleway and realized Annelies crawled up the stairs in record time all by herself, without anyone asking her too. Now, she can't get enough of climbing the stairs, like a new world opened up to her! Little superstar... :)

Friday, July 2, 2010

What's in an IQ?

One of the most exciting things about the birth of a baby is the "clean slate" of possibilities that accompany him or her. New parents look at their beautiful baby and imagine the things he/she can and might do. There is no limit to this imagination and the feelings of hope and anticipation that accompany it, which is such a wonderful ‘boost’ for new parents.
When your child is born with Down syndrome, your "clean slate" of possibilities is quickly filled in with a list of “Things to be Aware Of”, “Things That Can Go Wrong”, in essence threatening to take away the wonderful opportunity to imagine the great things our children will do. Among a myriad of potential medical issues from obesity to Leukemia is the mention that we can expect our children’s IQ to be between 50 and 70. This means at best, mildly mentally retarded -70- (I hate that word but am using it purely in a clinical form here) to moderately so -50- .
I feel that this sucks on a few different levels.
For one, I believe that the accomplishments of a child, or lack there-of, are largely attributable by what is expected of them by their parents. This goes for typical children as well as those who have developmental delays of whatever kind. Time and again I have seen articles and films describing a person with Ds or other disabilities who "exceeded all expectations" because he/she accomplished "unexpected" things. Parents in these cases always said: I expected from this child exactly what I expected from my other children, no more, no less.
It is difficult for a bit more of an easily intimidated/influenced, somewhat insecure parent of a child with special needs to stand above the expectations society wants to put upon our children. It is a challenge to have a kind of ‘blind fate’ that ‘Things Will Be All-Right”.
I believe that parents are the ones who put the biggest expectation on their children, and thereby communicate to these children what they are, enabling the child to reach for whatever those expectations are. You can have a super smart child who is an under achiever because parents just did not expect things from that child, sadly we see this over and over again. The reverse is also true, there are plenty of people who’s IQ’s might measure out to be ‘ below average’ but who absolutely accomplished things in life that are remarkable just because they were encouraged and believed in.
A few IQ-related things I feel very strongly about:

1) IQ is not the only measurement of intelligence. There are a lot of really dumb-ass smart people out there! There are things called “Common Sense” or “Street smart” that take us quite far in life.
2) ‘Our’ kids are NOT ‘doomed’ to have an IQ of between 50 and 70, just because they happen to have Ds. I have a feeling that this generation, if someone takes the time to track IQ’s, will show an increase, simply because we as parents will put higher expectations on them.
3) One person’s IQ can be measured on different occasions by a different or the same person, and come out to be different so it is NOT an absolute by any means.

A big revelation came for me when Annelies was about 4 months old. Even though it was evident from day one that she was a persistent child (she was trying to lift her head up 12 hours after she was born, I now realize how BIG that is!!), at around 4 months I started to relax and feel “OK” about the future. I began to realize that Annelies’ future is just as bright as that of any child out there, but that it would be up to us, as parents, not to put any kind of ‘ceiling’ on our expectations of her. I am thankful for the parents who began to keep their children at home in the 50’s and 60’s rather than having them raised in state institutions. I am thankful to the same parents for blazing a trail to inclusion in schools, for without this, we would not be able to even begin to expect ‘typical’ things from our children.
We have a way to go, and most certainly I felt like I was thrown into a battle I did not want or expect to fight when my Daughter was born (or, for that matter, when my son was diagnosed with Autism at age 30 months). But alas, here I am. Here we all are. And it will be OK. It will be more than OK. It will be excellent, because we will expect it to be.

Annelies enjoying a playdate with her friend Gracie at the park.