April 18th: How to Communicate with Marco - 101

Take One:

Mommy: Marco, do you want peas?

Marco: No! (OK, so Hallelujah, Marco now gives Yes and No answers to most questions appropriately. I ask them in Dutch and he answers "Yes" or "No" in English which is fine by me. He answers very snappy and forcefully, hence the exclamation marks behind his answers.)

Mommy (thinking to herself); D'uh! while mentally smacking herself on the head.

Take Two:

Mommy: Marco, do you want to eat?

Marco: Yes!

Mommy (mentally) gives herself a high five and dishes up the peas.

Here is the result. Hah! I outsmarted the kid again!

Incidentally, this was to be a blog about Annelies and I have written very little about her. Right now she is busy growing teeth, about 3 at once 2 times in a row. She is a trooper!! I will write more about her soon.

Hugs and Kisses!

April 14th; Taking a Break...

OK. So things have been interesting for us as a family in the past year and a half. Annelies was diagnosed with Down syndrome when born, and Marco was acting differently than we thought a then-2-year old should so about 6 months of being in denial he was diagnosed with Autism. Most of you know that the Autism Dx came last September. I took a few days off work, upped the anti-depressants, got Marco enrolled into a GREAT program thanks to our awesome early intervention coordinator, and re-focused on work where we had to complete a HUGE migration. This is project I had been working on for over 5 years. (Basically a system that we built in-house to deal with reporting transaction information in many different ways- those of you who I work with will laugh at the simplified explanation, but I don't want to bore anyone).

Sure I had initial issues with Marco's diagnosis, but I thought I had it all under control. I worked a lot, had a lot of early morning meetings (I mean, really early, like 4 am which happens when you work with people in India), hashed out and wrote a lot of procedures, worked on a lot of last minute stuff before the migration and a lot of fixing stuff afterwhards. It was the most successful implementation I have ever been a part of, and we were all super proud of what we had accomplished. By January, most of the bugs were fixed, and things were rolling right along. And I began a downward spiral like I have never experienced before. It is almost as if it hit me then, at that moment when work was becoming less demanding and I had time to think about things, that I put into this world 2 children with disabilities. I went round and round with self-blame. Seriously, if I ran into some one in the same position, I would never think they are to blame, but where it came to myself, I opened up a big can of blame. Nice, and not at all productive. I was tortured with the questions that came up in my head: How will the kids develop? Will I ever have a conversation with Marco, or will Marco ever have somewhat of a normal life? I have been asked about how I felt about the 2 diagnoses, which one was "worse". I would have to say the Autism was the worst. With the Down Syndrome, it was obvious when Annelies was born to both Aaron and I. (I think I knew, at some level, during my pregnancy.) The autism was something that was easy to be in denial about, especially since Marco is what they call "high-functioning." But autism is so "invisible." It is like a scary thing that takes over your child and can make him or her throw tantrums, in some cases not communicate at all and stare blankly out into the world. It can get worse. That is the scary thing about autism. Marco is stable, we think and hope, and that fear is subsiding a bit, but you keep thinking and hoping and really just having to have faith that "things will be OK".

With these diagnoses so close together (and it is rare to have 2 of them in the first place) I think I felt I lost all control. It is kind of like being hit by lightning, it happens out of the blue, it is a shock to the system, and you are NEVER THE SAME. That moment of diagnosis changes your life and makes us realize how little control we have over huge events in our lives. But it also shows the strong side of us. We deal with things we never thought we possibly could when we saw others deal with it. And at some point we appreciate ourselves more for it. But I hit a brick wall, started freaking out about all the things that need to be done to help the kids and also started looking at the world differently. Where I normally cared about my job, I began to not care. How important was this compared to the kids? I would wake up at night freaking out and being generally depressed about having to go to work. It was hard to focus. I was not the employee I really normally am. (Funny enough, my Manager told me he really did not notice, felt that I handled things so well...so I fake it well...). I explored my options and found that California has a financial compensation plan in conjunction with the FMLA (Family Medical Leave Act). I contacted HR, spoke with my management and arranged a 10 week LOA, of which I am now in the second week. It has been nice. Of course I know I need to go back at some point, but for now I am getting a mental break, counseling to deal with the Dx-es, and am working out somewhat regularly. I am spending time with the kids, going to their therapy sessions, and my Husband, and am kind of re-finding myself. It is easy to get lost in all the obligations of life, but I think our main obligation should be to ourselves first, THEN we can meet the other ones, especially the challenging ones.

Marco 17th, 2010: Bye Bye Mama

Three simple words, easily taken for granted by most parents of little ones who develop typically. Not so in this household. Until yesterday, when one of us said goodbye to Marco, we would tell him Bye bye (or Dag - in Dutch-) Marco and Marco would promptly repeat "Bye Bye Marco", then we would tell him to say Bye Bye Mama (or Daddy, Oma, Opa or whomever we were saying bye to.) Yesterday evening, Aaron was getting Marco ready for bed and I was heading out so I stopped by Marco's room to say bye. I said "Dag Marco" and he looked at me (this is so key for Marco- he is learning to make eye contact while addressing people) and said, clear as a bell: Bye Bye Mama. Aaron and I were almost in tears. I walked on air the rest of the evening with the feeling that for now, I knew that Marco will find his way in this world. His own unique way.

March 4th: Small Breakthroughs for Marco (It is important to celebrate the things that seem small...)

One of Marco's big challenges is not talking directly to/at people. He talks up a blue streak, but not at us. In the past 3 months he has really begun to talk, talk, talk but it is all repetitive stuff, he repeats things after us but does not ask us for anything. (So at least we know there is language in there. I consider this a baseline, a place to work from. Not a negative thing :) )
The other day we were in the car, the 4 of us, and from the back seat comes a little voice: water...(the spelling is the same in English and Dutch, but he used the Dutch pronounciation). I looked at him and he repeated what seemed like a request. Of course we were in the car. Damn! Here Marco asks for something and we can not grant his request. 10 minutes later at my Mom's house, Aaron remembered his request, we gave him a little bottle of water (he loves having his own container, that is a typical small kid thing though) and he drank like he was dried out. The next day, the same thing happend, this time he asked for juice. We were in the car once again, but I had juice with me this time.
This morning we got to school, and I had a breakfast bar for Marco (stellar mommy that I am, sometimes I feed my kids prepared food.) I gave it to his tutor to give to him and she bent down to his level and asked him: Marco, do you want this? And he said "Yes". WOW. Sometimes it is interesting (I have no other words) to see what our SP's (Service Providor- anyone who works with our kids) can get out of our kids. If I let it, it can actually make me feel a little bit bad as in "why did I not think of this". But I have to remind myself that these people are here to HELP us, and we can learn from them if we actually allow ourselves. It is the best thing for the kid.

March 1, 2010: Overwhelmed & Letting Go (or Re-directing?) Dreams.

I think it is normal as a parent to sometimes get overwhelmed. I really seem to have reached something like it lately. There are times I feel I might not be exposing my kids to the opportunities out there for them. There are so many things I am not taking advantage of. Yes, it was my choice to work (I actually never really gave myself the choice, it was kind of an unspoken that I would continue to work.) Typically this is not that big a deal, I think, if you are a parent. We have a lot of extra-curricular activities for the kids though, just because of the nature of their dx-es. I hate when I can not take advantage of an opportunity for them. It stresses me out.
A the same time, I like riding horses. I have one horse I bought 6 years ago, for whom I had dreams. He is a nice horse, with talent. I got him for a good price. WHen I saw the ad, I remember the tingle in the back of my neck. This was my horse. I had a good time starting him. Took lessons, enjoyed that, looked forward to going to shows. Never did take him to a show though. That's OK, because the kids came instead. I always thought that I would get back to riding regularly and getting the horse ready for shows. "Maybe this year" I thought last year. Then Marco's Dx came. It really hit me for a loop, and even though I functioned pretty decently, I really had a hard time. Not only with the dx but most certainly the 6 months leading up to it. I was in denial but I knew something was up.
Now I am kind of dealing with Marco's dx, but I must honestly say it is harder than Annelies's. Why? I do not know. Is it because it is a second one, and it just is a little too much to deal with (well, of course we have to deal and we will. There is no question there.) Marco is doing better, he is making progress. But autism is such an unknown to me, such a black hole. What if he gets worse. Or God forbid, what if Annelies has it? Sometimes I drive myself up the wall worrying.
I have not been riding regularly. That stresses me out a lot too. Here is a nice horse who is not getting the attention he so deserves. (Luckily, all the horses are out in pasture, so they are not stuck in a stall, they get movement at least). Today I kind of hit rock-bottom and the thought came up that I might give up my horse. It will take some of the worry away of not spending time with him, and I can focus better on the kids and my work. It sucks to give up a dream, it really does. But maybe it is the best thing to do for now.
Maybe I will sleep on it.

Feb 26th, 2010: Speech

It occurred to me that I have not blogged in over a month, so it is time to share some thoughts and pictures. With Marco just 3 and Annelies at 15 months, speech is now a very central skill we focus on in our household. Besides going to his ABA school 5 hours a day M-F Marco also goes to ST 2 times 30 minutes at the Loomis School District (this just started) and he sees a ST once every 2 weeks (Eric, who has been working with Marco -us, really, I guess- for almost a year now.) It sounds like a lot, but Marco does really well with everything. Going from a full time schedule to a part time at the ABA school has been wonderful, he used to be just exhausted at the end of a day. Now he either goes home or to Daycare, and usually he gets a nap, which makes for a much happier little guy.

I was nervous as hell bringing him back to daycare. He had not been there for 2 months, and during that time received one-on-one input at his ABA school, and I was scared to death to bring him back to a less structured environment. On the other hand, I was happy for Marco to go to a less structured environment so he could have a chance to observe other kids, interact if he wants or do his own thing (they are not really strict, it is not even pre-school yet). It turned out a lot better than I thought. When I bring him at one, the kids are settling down for their naps, so the teacher has Marco's bed all ready to go. She sets his bed up near a table so he can play or finish his lunch if needed. He has been taking at least 1 hour naps there!!! That tells me that yes, he needs that nap still. Otherwise he is doing pretty well, he participates in things quietly.

There was a time when I was hoping for Marco to start repeating things we said. I was freaking out (on the inside) that he was not doing this, because it is such an important, logical step in a child's learning. Now he is in that repeating phase, and he has days where he just talks up a storm. Of course, now I am looking forward to some receptive conversation. LOL. I guess it is a parent thing. We want our kids to do well, no matter what is going on. But one thing hit me like a ton of bricks yesterday. This came after a conversation I had with a colleague who has a 4 1/2 year old who is getting ready to start KG. She is not sure if he will be ready, and some of this readiness has to do with speech. It hit me like a ton of bricks that a child's speech level does NOT indicate his/her INTELLIGENCE level. OK, I think I knew this deep down, but it was nice to kind of have that thought come to the forefront of my conscience (Hah, I don't mean to get all weird on you here...). Anyway, I am adding a pic of Marco having a Yuki moment.

Love to All XOXOXO

Jan 31, 2010: We Are Standing!!!

Look at what I found this morning when I came to get her out of bed! She is pretty proud of herself, too!