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.

June 25th, 2010: Just Some Updates

This poor blog is in big danger of getting neglected now that I am back to work. I will do my best to post once a week though. (Not even sure if anyone READS this anymore anyway...) Luckily, I am currently not working on Monday's, which gives me more time with the kiddo's. We have 3 different therapy appointments on Monday, so it works out well.

Last Monday we took advantage of a free morning by having a music play date! It was the first time for me to host this many people in our house. I counted at least 15 kids (this included siblings). So much fun! Annelies had a great time, she was more comfortable and actually was intrigued by the guitar (see pictures). Maybe there is a little future musician in there :)

Wednesday, Marco had an MRI appointment at the UC Davis MIND institute. The grand plan was to have Marco fall asleep on the way there, get there with him still asleep, get him out of the care and into the building, preferably directly onto the MRI table, and do the procedure (30 minutes of weird gnashing sounds which are kind of dimmed by a headset. In perparation for this, we had let him listen to MRI sounds on a CD with the headset on while asleep. This was no problem.

So, we set off for UCD MIND and Marco fell asleep within 5 minutes. Check! We were high-fiving each other, it was pretty hysterical (we were being quiet of course). Marco was even snoring. Then we got to the exit, and Marco WOKE UP! Darn! I called the lady we had the appointment with, and she asked if we were willing to keep driving. So we drove for an hour, Marco WIDE AWAKE the whole time (We drove to Roseville, then turned around and drove to Galt. Crazy!!!). I called and told her it was not going to happen tonight, and could they do this under anaestesia? She said yes, but best to try without. She was going to call me for another appointment. We drive home, get near the Gereenback exit and guess what? Marco ASLEEP! Since only 5 minutes had passed, I called the lady back, and she was thrilled and told us to go ahead and come on in.

This time Marco stayed asleep all the way into the room. Then he woke up, and was suspicious of the sounds the MRI machine made (kind of a whoosh-whoosh sound). He was super tired though, so I held him in the rocking chair in the darkened room. Twice I tried to lay him on the bed by the MRI machine, he would not have any of it. Can't blame him! Altogether, we drove for 4 hours and spent one hour at the UCD MIND image center. It was an intersting night allright! We will probably have the MRI done under anaestetic, because it would be good to have the images just to make sure all is well with his brain, and to have a 'baseline' for future images (as part of this study he will have an MRI annually).

June 18th, 2010: Hup Holland (World Cup Soccer)

OK, we are ready for the NED-JAPAN game tomorrow morning!!!

June 16th, 2010: Made a Difference to That One...

We waited anxiously...

I got to hold Sofia...what a wonderful treat!!! Sofia and her Brother are starting to bond...so sweet!!!

The Sanchez family...all 6 of them!!!

A long time ago I read a story about a little boy who was on a beach throwing little crabs into the sea. These little crabs washed onto the sand, and if they were not lucky enough to be caught in an outgoing tide, they would die there. The beach was littered with these little crabs. A gentleman came by and asked the little boy how he felt about the fact that he could never, ever help all the little crabs out there. As answer, the little boy picked up a crab, threw it into the sea and said: "Made a difference to that one".
Recently, someone mentioned recently to me how they felt that adopting a child is nice but you can't possibly help all the childern out there, so why bother? I reminded them of the above story.
Yesterday I was honored to be part of a homecoming so, so special it will be with me forever. Yesterday, little Sofia, 16 months old, came to the US with her forever family. She was lovingly greeted by her 3 handsome older brothers (what a lucky girl!) and a group of nearly spastic, emotional, happy, proud 'aunties' holding signs and so much love in our hearts. It was something to behold. I have no pictures, because I forgot to bring my camera (it was a challenge to get myself out the door in time because I made a sign...and it was all very last minute...because well, that is how I roll).
Sofia let herself be held by all of us, she was so cool about it all. It will be so neat, years from now, when she reads her Mommy's blog and sees pictures and video (someone took video, did they not???). She will know what all the hub bub was all about, how super special she is and will always be. While listening to the happy chatter of my Sisters, I could not help but think: "We made a difference to that one..."

May 31, 2010: Running (OK, Jogging...)

This post is about me. I usually do not like to talk (or write) about myself, but maybe others recognize themselves. Most of you who know me, also know I have a weight struggle. This has gone on for most of my life, although I have had "thin" years. Looking back at pictures when I was younger and thought I was fat makes me think: WTF was I thinking, I was not fat there. Somehow the fat thoughts crept into my brain and never left. So now that I have 2 kiddo's, and our little family is complete, it is time to do something for myself.
Two months ago, Aaron and I went to the local gym. I decided that I was going to do something GOOD for myself during my leave from work. It was fun, I showed Aaron the weights (I used to work at a healthclub. Go figure. I used to HELP people lose weight.) After the weights we went on the treadmill. I had been walking on an incline so decided to do that, Aaron got on the treadmill and started running (the guy has not worked out in YEARS, but for some reasom when you get a guy on a treadmill, walking just won't do for them). So after 5 minutes I thought, shoot, I will jog, maybe a mile. 2 miles later, I stopped. I felt goooood! So I returned to the gym the rest of the week and jogged 2 miles. I have been jogging for a while now, and really enjoy it. I think it is because when I work out, it is ONLY FOR ME. When I do my other hobby (horses), I still always have to consider someone else (the horse), but when I work out, it is just me.
Last Saturday I was crazy enough to agree to work out with 2 mommies who are wanting to get in better shape but are not overweight. I was the slow one and kind of wanted to berate myself for even going (they might laugh, they might look down on me, all those kinds of thoughts went through my head that are probably not true because they are some of the nicest women I know, like so many I have met thanks to Annelies. Oops, run-on sentence...) It did make me think about goals for myself (we will talk on a regular basis about our goals and eating and hold each other accountable.) I also learned some additional excercises and was reintroduced to lunges. So this morning at the gym I used the indoor soccer field to do lunges and other excercises. I am sure I looked like a dork but I really did not care! It feels good to do something healthy for myself finally!!!

May 20, 2010: One Last Time

Being a parent, it is tempting to feel you need to fill ALL the needs your little one has. To know the answer to all their questions, be the solution to their problems. But sometimes we need help. Funny enough, we needed Annelies to learn that Marco needed help. Annelies introduced us to Early Intervention so that we could open our eyes and see what Marco's needs were. Thank You Annelies. She is so, so wise.
Through Marco I learned that I, the Mom, do not have all the answers. When you deal with Autism, there are bridges that need to be crossed with the help of professionals. (OK, maybe this is not the case for all parents. Maybe there are parents who can do it and have done it all, and my hat is off to them. I am not one of those parents. I needed help.) The first person who helped Marco and us was Eric, his Speech Pathologist. Thankfully we were hooked up with him before the laws changed last summer.
Eric helped us see the different ways we could communicate with Marco. He showed us not all communication is verbal. This was information I knew in my heart of hearts, but when as a parent, after receiving a difficult diagnosis (and I have to say that Marco's Autism dx was WAY harder than Annelies's Ds dx) you just pain so much for those first meaningful words it is not easy to remember all you know. We had some desperate moments, Aaron and I. We wondered if Marco was EVER going to talk. We also had times where one of us was up, the other one down. One time I asked Aaron to go to ST with Marco, because I could not handle it. Aaron came back from the session so elated with the things Eric was able to do with Marco, which thrilled me because I was not able to see it at the time. This helped.
Of course, having SP's in our lives means that we do have to say good bye sometimes. Wednesday was our last session with Eric, because he is moving to the Bay Area. New opportunities await him, and I am happy for him while being sad to see someone leave our everyday lives. There is no doubt that there are a LOT of lucky kiddos in the Mountainview area!!! Having Eric leave makes me realize how much some of these wonderful people, who choose to study their butts off so they can help families like ours, mean to me. So, thanks Eric. Thanks for bridging a gap, for helping us and Marco. You truly are a part of our family, and are forever in our hearts. Good Luck to you.

May 16th, 2010: My Little Destroyer

It cracks me up when people (usually of an older generation) oh and ah over Annelies and call her a "sweet little angel....so gentle". While I am OK with the compliments, she is a sweet girl MOST of the time, she has a destructive side. A verrrry destructive side that rears its head when she is in the 'play area'. We moved to a larger home, so we now have the luxury to dedicate one area of the living room, that even has its own window, as a play area. When Annelies is let loose there, she does NOT waste any time in turning the storage bins upside down (OK, pun not intended...seriously). Here are the pictures as evidence.

HUGS OXOXOXO