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.

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.

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...

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

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.

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... :)

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.