09/01/09: Here We Go Again...

So when Annelies was diagnosed with Ds, and I was kind of getting used to the diagnosis, I started to look at things that could be worse than a Ds diagnosis in order to help myself get past that moment. I am sure there is a fancy Psychological term for it. One of the things I said: Well, at least it is not Autism. Because my view of Autism was as bad as the one I had of Ds (I thought all kids with Autism were like Rainman, not able to have any kind of connection, severely cognitively delayed except maybe in one area where they were savants). Well, I get to eat these words today. Today we had an appointment with a Psychologist for Marco, to basically check out of he belonged on the Autism scale. And he does. On the mild side of the spectrum. Marco's indicators for Autism are that he does not share joy with others (I guess it is 'innate' for kids to share joy over a toy or a new thing, they show this my looking at the toy/object, then at the person near them. He does not do that. He shows joy, laughs and smiles, but does not look at us in such moments) and he does not make appropriate eye contact. Physically, he flaps his hands when he is excited (I always thought that was just a cute Marco characteristic) and he used to walk on his toes a lot, now he does it less to almost not. So he is on that cusp.
In the back of my head I know that this is actually something that can be overcome. But I have so many thoughts running through my head..like: so, now I am on that train, too. WTF!?. I mean, really. (and you have to realize this was in the last 12 hours, and I am running a 102 degree fever right now too, so I am rambling). Why us? Aaron and I were not even going to BE parents. We were going to not have kids, and be selfish and do what WE wanted. And...the worst thought is that I am an absolute failure as a procreator. (This is hard, buit those who know me best know that I tend to beat myself up quite often). Now, lest you freak out about me saying this: I would not change my kids for the world. I love them more each day, and that is endless. My pride for them could not be bigger. But I am a bit miffed at whoever thought that we could handle this. But somwhere in there, I know we can.
In a moment of clarity, Aaron said that our kids will balance each other out: Annelies will teach Marco to share joy, and Marco will teach Annelies intellectual stuff she will need to learn to get through life. That was the most beautiful thing I have ever heard him say. I think in the end we will all be stronger. Not feeling so strong right now though. One thing I learned about Autism is that 70% of people who have it are indeed cognitively impaired (the Psychologist said "retarded" but through my Ds connections I have learned that this is not a PC term to use..). Marco's IQ test indicates that his IQ is in the normal range. So we have that at least. He also said we need to 'challenge the diagnosis', which was nice to hear. He is not putting a label on our kid. He feels that there is a big chance that Marco can come in at 5 or 6 years old, and repeat the test and have the diagnosis reversed. He has seen that happen many times in cases similar to ours. He also said we needed to be very demanding parents. We need to do and ask for and get what is best for our kid(s), be it at school, daycare or whatever. The squeeky wheel, he said. Ironically so very different from how I have lived my life. I have always been a "Yes Maam, No Sir" kind of person, not really standing up for myself, not wanting to attract attention to myself. Interesting the lessons life sends our way. Guess I am not meant to be that timid person. (and believe me, since Annelies's birth it is much, much less).
It is kind of funny, because when we had Annelies's diagnosis, it was known that it was 'for life'. She will always have Ds, but she will be able to develop to her best potential simply because she has a lot of support and we are getting her the best of the best or therapy. With this Autism diagnosis, being that it is 'mild', it can be reversed, he can grow out of it, ot can go away (or whatever you want to call it). It is just so weird to have that stereotype blown out of the water. That a kid with Autism can be loving, and huggy, like Marco. That they can have joy and show it, but they need to learn to fully share it. He does look at us at times with a shy smile that is so heartbreakingly cute, maybe because it doesn't happen that often) as if we share a little secret. It is usually when he does something he enjoys, like the swing, or I give him something to eat that he really enjoys, or I praise him for something he just did, which shows me it is obvious he is happy to please others (another thing that did not jive with my preconceived notion of Autism). So here we are. We will be signing up for a "Walk for Autism" AS WELL AS a "Walk for Ds" this fall. LOL. In the meanwhile it is the next day, I began writing this yesterday but needed to share the dx with my oversees family before I put it in my blog. My fever is gone now, still feel weak but recovering.
The bottom line is that I love my kids. Marco is still the same Marco, I love him more every day. We will survive. Right now, the emotions are high, but we will get through (it will help when I feel better).

Aug 28th, 2009: Doing Something For Yourself

This week, for the first time ever in my life, I got a PEDICURE! It was so cool! I never really did stuff like that for myself because, well, I really don't know why. Maybe did not really think I was worth it or something like that. And I thought I was too busy. But it is a good thing to take time out and let yourself be pampered. We are all busy, but we all have the same amount of time in the day. So it is what we do with our time that matters- how we choose to spend the time. And it is important to take a little time to pamper ourselves now and then! Now, I need to go take care of Marco, who is running a fever. (There is always SOMETHING...LOL)

August 25, 2009: Growing Up So Fast

Funny how I don't really notice my kids' growth until I take a picture. I kept the camera nearby all weekend and took some pictures of both kids. When I looked at Marco's pictures, I was amazed at how 'un-toddler-like' he looked in them, especially the one where is is wearing the red shirt (which has to be my favorite of his shirts- courtesy of our friends the D'Arcy family). He is just over 2 1/2 now, and becoming more independent. Still not speaking like most kids his age, but he understands everything. Just because he does not speak or answer me back, he can follow directions in both English and Dutch. I learned that I can expect quite a lot from him. He can carry his lunch box to and from the classroom, and his plates and cups to and from the kitchen and dining room, pick up papers and toys that end up on the floor when he is playing (my Mom gave us a rack with colored boxes to store the toys in, he can help pick up and put toys away in that). So that is kind of nice. I give him small tasks, and if it is too much to understand I break the task down (like: 1: pickup item. 2: Carry item down stairs. 3: Put item in laudry hamper.) So I have a little helper who is really proud of himself when I thank him for his help or praise him for listening to me. Very cool. He is also starting to interact more with his sister. She will sit up and smile at him, and he smiles back. It is really cute to watch. This was happening a lot on Sunday. Of course later in the day, she cried for some reason or other, not even hard or anything, but Marco walked right over and whacked her on the head. Where the heck did he learn that??? I reprimanded him sternly for that. She did not even care. He did not whack her hard, really does not have the capacity to yet, but it was kind of a shock to me. I guess it won't be the last time...I mean, they are close in age, there will probably be fights. I do hope that for the most part they will get along. Time will tell...

Aug 19th: Annelies's First Class

Wednesday the 19th I took Annelies to her first “Wee Play” class. We were the first ones to arrive (I was very eager, even though I know it is only 5 minutes from my home I left myself 15 minutes to spare…). The class is held in a portable building that is occupied by the Placer County Office of Early Infant Education (or something like that). On the floor was a huge mat covered with squishy toys and Boppy pillows, very welcoming stuff for the around 1 year old crowd.
I met a Mom who had her daughter on the same day Annelies was born. (Until now I had only heard from our PT that there was a child out there who was born on the same day, so I was very excited to meet them.) This child is adorable and already sitting completely by herself (Annelies is almost there). It was nice to talk to this Mom, because until now I have shared very little in person with ‘fellow’ mothers of children with Ds. Very nice Mommy, also works full-time, so her mother will be attending with her Daughter. My Mom will also attend with Annelies on some occasions, so she won't be the only grand mom there. The famous Gracie and her Mom were there (I call her “The Famous Gracie” because she is the one I heard about when Annelies was born. She was born at the same hospital, about 2 1/2 months before Annelies. The nurses told me about how they adapted to the Ds Diagnosis (without getting too personal) and they gave me the family’s number but I never called (was not ready). Grace has the same PT as we do, so I received regular updates about her in the past 6 months. It took me this long to actually meet her Mom (I met her at the Convention). Kind of funny how these things go.
About a month ago I felt I was getting to the point where was feeling ready to meet others and share experiences and now I seem to be meeting them without much effort at all. Gracie’s Mom happened to be at the same workshop at the DS Convention (we had, like, 10 to choose from, about 100 people per room, and she sat down in front of me. I looked at hear badge and recognized part of her last name so I asked her if she was who I thought she was after the lecture). I had heard about the little girl born on the same day as my Daughter (odds of which are so small considering on average only about 15-20 children with Ds are born in the US daily) having 2 in one county on the same day is an interesting coincidence. They will be at the same High School, too. I really wanted to meet them and am glad I will now see them on a regular basis. There was also a little boy who just turned 1 yr old (lucky little dude with all the cute girls in his class!), and another little girl who was a little bit younger than Annelies I think.
The class begins with a circle activity that singles out each child for a few moments. Then we learn about an activity we can do with our child (in this case it was baby massage). After that a play activity, where we focused on getting the kiddo’s interested in a toy and having them rotate their trunk while reaching for it. At the end of the class there is another circle activity.
It is amazing and cool to see the different levels of development, and how quickly the kids develop and learn. At some point in the class I realized I did not see a group of kids with Ds or other disabilities, I saw a group of kids learning and having a good time. Annelies fit right in, she was all over the activities. She paid attention when she was addressed in the circle, and did not get overwhelmed once. I came away from this class exhilarated, and happier than I have felt in a long time. Between this class and the Convention a few weeks back, and the experiences I read about on the message board I really feel that there is no limit to what I can expect Annelies to do and learn, and that makes me so, so hopeful and happy!

August 12, 2009: Annelies Goes To Class

Very cool: Placer County offers a weekly class that is called “Wee Play”. It is facilitated by our PT

, Esther. Initially I thought this was not an option for Annelies since I work and Aaron has an irregular schedule. But I began to think about a way around it, and figured it out. The class is from 9:00 to 10:15. I will work from home early in the morning for a couple of hours, get the kids up, and take Marco to daycare. Then Annelies and I will go to the class. My Mom will meet me after the class to take Annelies, and I will go to work.
There are about 6 kids in the class, about Annelies’ age (she will probably be the youngest there). It will be a great way to meet other parents and for Annelies to have some social time around other kids. I am so excited about thi

s, as I was driving yesterday I found myself planning what outfit Annelies will wear to her first class on Wednesday.

Aug 7-9, 2009: A Nice Weekend

A Few highlights:

1) I was off on Friday, this gave me time to be at Annelies’ PT session, hold 3 horses for the farrier, ride PG and Genie, and have a massage while Aaron picked up Marco from daycare.
2) Saturday I cleaned the house, rode PG, Genie and Diabolo, de-wormed the horses, picked up supplements for myself and the horses and had a short visit with Edgar, swam with Marco (he had his arm bands on for the first time and was able to float in the water, a whole new experience for him), played with Annelies, took a nap in the afternoon.
3) Sunday I rode PG and Diabolo, did grocery shopping, cleaned house, started the laundry, had a little time to myself in the evening after Marco went to bed, had a great night sleep (this has been hard lately, so it is worth a mention when I do get it).

Health-wise I feel a lot better now that I have been taking vitamin D and Iron (among other supplements. I have more energy. I am also talking more time to workout (I use the gym at work). I lost 20+ lbs so far, have a long way to go but feel a lot better.

August 1, 2009: Down Syndrome Convention in Sacramento

1) We saw a couple who are planning their wedding. This was a very hopeful experience. They had lunch in the deli we ate at on the first day, they were holding hands and having their lunch. It was neat to see a couple in love, that they have Ds was secondary.
2) There were too many workshops to choose from, so we decided to divide and conquer in some cases where I went to one and Aaron went to another. That way we learned about Special Needs Trusts, Cognitive Development and disciplining an child (this was useful for both kids), How to still take time & communicate as a couple (we did that one together), Brain development and different studies that are being held at UC Davis (because it is so close, Annelies will be part of the research).
3) I met a Mom who had her daughter Gracie 2 months before I did at the same hospital. She and I will be taking the girls back to the NICU to visit the nurses who were so helpful during our stay there. It will be nice to get together with her and talk over our experiences, and get the girls together for playdates.
4) Aaron met a nice Dad (I met him & his wife later on) from Rocklin, with a 17 month old son. We will be inviting this family over to our house for dinner and also sharing of experiences. This way we are now starting to build up a network of support.
5) We found that we have it so easy compared to many parents whose kids have multiple surgeries. It is not unheard of for a child with Ds to have upwards of 30 surgeries! We are grateful for Annelies’ health.
6) It was so nice to have a kid-less weekend! Aaron and I enjoyed Dinner and lunch out in Old Sac, at times we did not even know what to say to each other because we are not used to being alone together. He has been working a lot (trying to get as much as possible overtime to help pay off some bills.) We now know the importance of making an effort to spend some more time together sans kids. My Mom, on the other hand, was pretty beat after 2 days of running after Marco.