Tuesday, September 1, 2009

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).

1 comment:

  1. That is such an adorable photo of Marco, and he smiles so beautifully too. I can imagine how hard it must be for you with this new diagnose, I remember when I found out about Saira having DS, its was hard to deal with but in the meantime I have learnt so much and this year has brought so many positive changes for me. I don't know why such challanges are placed before us but we are certainly chosen perhaps because someone up there feels our children are in the best hands possible. I hope Marco progresses well, and as you said Marco is still the same Marco, thats all that really matters.