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.

July 26, 2009: New House & Kid Updates

Finally...

I haven't written here since the beginning of June and here is it July already! The biggest change for our family is that we moved into our new house about a month ago. This went without a hitch partially thanks to the help of some of our friends! The new house is almost twice the size of the old house, so all our stuff fit in perfectly with room to spare. There are still boxes in the garage, but I am not thinking about them now. (If I can't see it, it doesn't exist, right?). The funny thing about moving (and I have moved OFTEN), is that when I move in about 2/3 rds of my stuff, I feel pretty much that I have everything I need and I wonder what I need the other 1/3rd for. (That is the stuff still sitting in the garage). At the same time, here we have this fabulous newish house, and I must say, our couch looks quite dated. But we are going to wait until both kids are out of the climbing phase until we get a new couch.

The other night, we hung pictures. That made me feel more at home.

Talking about the kids, they are doing well. Annelies is sitting, she has to hold on to something when she does, though, but she really wants to sit and stand. When I am on the floor with her, and help her sit up, she pops right up onto her feet. Our PT is OK with her doing that, she is actually quite impressed. I am no longer comparing Annelies's progress to what Marco did. I actually kind of forgot what Marco did at her age, and that is better because I will drive myself nuts.

Marco has a weekly speech therapy session, because he has a speech delay. This sounds incredibly serious, but if Marco was never in day care I would not have really been too bothered by it. The daycare urged us to get him some early intervention, and since we already deal with them for Annelies, it was easy to have Marco evaluated. The speech therapist is fabulous. This guy is obviously in his right calling. Have you ever noticed how delightful it is to see someone practice his or her profession when they are obviously in the right one? Well, this guy certainly is, and he has a wonderful report with Marco. I enjoy going there, because Marco makes such progress.

About a month ago, Aaron and I were asked to come to his daycare to talk with the 'powers that be' there and his current teacher. They were concerned because of Marco's speech delay, and the fact that when they asked him to stop doing something (like opening the door) he would hit. Now, he does not hit hard, he would just bring both arms up and then down out of frustration. So, we went to talk to them, and they urged us to get him a psych evaluation. They want to make sure 'nothing else is wrong with him' or something like that, and they seem to think that maybe Marco will get some kind of assitant who can come to the classroom and help them interact with Marco, give pointers and such. (In order to get that, though, you have to have a diagnosis on the Autism spectum, I was told). To satisfy them we called our EI person and she scheduled a psych eval for Marco. Personally, I am more of the school of letting kids develop at their own speed, as long as there is not something seriously wrong. But whatever, it seems like here (in the US), if your kid is not within certain lines of development, we need to do all kinds of things to 'help' them. His speech therapist felt that this is a bit over the top, because he is making good progress (he does not think Marco has Autism). But he said that doing the test would put my mind at ease (I have shared my concerns with him several times, and he has pointed out several times when Marco shows empathy and awareness of others and others' actions and how his actions affect others around him). Since we already have the appointment, and it is hard to get these types of appointments, we will go ahead with it so as not to irritate anyone.

So the other day I came to the school and pointed out that I had not received any additional notices about Marco being aggressive, and asked if it was less. The teacher said: "Yes, it is less, but he still does repetitive behaviors". Whatever that means. So I relayed that to Eric (speech guy) and he rolled his eyes and told me that Marco is 2 1/2, and it is absolutely NORMAL for him to do repetitive behaviors, because that is the way he learns (it is not like he bangs his head on the floor or the wall or anything, or sits in a corner for an hour straight and plays with the same thing over and over). Eric is going to talk to the school one of these days, he told me. (He is switching his schedule around so he will have Friday's free for education and meetings and stuff like that...so he will be able to talk to them on a Friday.)

Next week is the Annual Down Syndrome Convention, happening in Sacramento. We are going on Saturday and Sunday, and it will be interesting. Aside from my Daughter, I have not met anyone with Ds yet, so I may get overwhelmed (I am afraid of getting overwhelmed). But maybe it will be OK.

June 2, 2009: Annelies is 6 months old!

The little girl had her 1/2 Birthday a week ago! She went to the Pediatrician for the 6 month well-baby check-up, who is very happy with how things are going. Annelies is at this time very tall, in the 90 percentile on 'typical' charts. I hope she keeps growing as much as possible. (Hidden behind this comment is the hope that Annelies will be as tall as she can possibly be...people with Down Syndrome tend not to get too tall...so maybe I sound vain here. Not sure how to express it, but I think every parent wants their kid to be 'normal' and even though she has DS, I still want 'as normal as possible'. I have no doubt that over time I will come to accept everything for what it is, that 'normal' for us will be not normal for others. It is what it is. I obviously love Annelies in her own right, so no one needs to worry about that...) . And despite all the rolls she has (cuddly), she is in the 50% for weight. Love me them rolls though, they are so freaking cute!

Anyway, Annelies is really strong which helps her with her PT (weekly appointment, and then we work with her, too). She really wants to sit up, especially when there are people around her having conversations. She wants to be part of things. So at her latest PT appointment, we worked on sitting in a box (it is kind of cool that just plain things you find around the house double not only as toys but also as therapy aides.) Some pictures below. Our cat Rusty is not so happy that we stole his box, though...

She is rolling over from back to stomach and lays on her side too (this is good because it brings her arms together in front of her body...). She makes all kinds of sounds, and laughs frequently. She is very charming, has a very outgoing personality and warms up to people and situations quickly. But she is also sceptical, when something new happens, you can kind of see her think it over. Like when a new excercise is introduced. The way she looks at you kind of quisically like: You sure about this? That makes me happy; I want her to question and test things and situations, not just go along with them 'cause someone says so.
Personally, I am doing OK. I went to a naturalist Doctor, because now that my child bearing time is over, I have to lose weight. A lot of it. This Doctor is very nice, and tested my blood for things I might be short of. I am iron and vitamin D deficient. So I am taking those along with other vitamins, and have radically changed my eating to a basically Vegan way of eating for the time being (I say for the time being here but I know that there is no way you can ever sustain weight loss by going back to an old way of eating. It is just that, after a certain amount of time I will be able to add back some other foods but the way I now eat will remain the baseline of how I will eat in the future.)

It works out for me as long as I plan ahead of time. I find myself bringing LOTS of food to work (due to all the layoffs on my floor, the refrigerator is practically empty, so I can store a couple of day's worth of food there) and eating often but light types of food (lots of spinach, whole grain stuff, fruit and beans). The Doc also sent me to the gym, which I started a little too zestfully because right now my right arm hurts like hell (I pulled a muscle). I did not sleep at all last night, and it was so paindful that I called in to work this am to stay home. I am taking 800 mg of Ibuprifin (presription) and that helps a little. Good god, I did not know a muscle could hurt this much. Childbirth was less painful (and it took a lot less time). Well, I will go back to work tomorrow because I don't want to miss too much (busy time right now, new system that will be implemented this fall. Finally; we have been working on it for > 4 years!). The drugs should help (Not that new sytem, but my arm pain. LOL.)

I will have to take it easier in the gym, will just do the cardio for a couple of days (probably not tomorrow, if my arm is still really sore it is so painful to get dressed!) OK, enough about my pesonal stuff :) This is a long post! Thanks for hanging in there with me. I am adding some pics of Annelies I just love, some in her chair and some in her box (Rusty's box).

5/31/09 Just Pictures

Annelies 5 1/2 months old (May 2009)

Marco about 5 1/2 months old (July 2007- picture taken by Liselot)

I am a cheapskate; therefore my childern will be sharing outfits (not to mention toys and such) at times. This outfit is so cute, it was given to Marco 2 years ago by our friends Bryan and Shannan, they bought it at the Margaritaville store (yeah, I am sure it wasn't cheap). I loved it, and saved it for Annelies, and she fits it now too.

It is so cool to have 2 kids and experience several things twice. These pictures were taken right around the 6 month mark for each child, and at this time, Annelies is still keeping up with her big Brother where it comes to skills (we notice some delay, that is to be expected and not freaked out about).

Funny enough, on pictures you 'see' the DS more than when you look at Annelies in person. Even though I notice it less, and my Daughter more (does that make sense?). This is a good thing because as she grows it will become more obvious. I dread the time that will come where Annelies will be recognized for her DS and not for herself. I know it will bother me more than it will bother her. I also know that there will be the important people in our lives (and the occasional stranger) to whom it won't matter, who will see and treat her as a whole person.

I think the one thing my kids have in common are the fact that they have infectious smiles that light up their whole faces.