Sunday, January 23, 2011

Joshua playing

A video of Joshua practicing his new skill. He can now put all 4 different sized balls in the top of the toy. Last night at EdVenture Children’s Museum he played with wooden nesting blocks and put a small block into a bigger one!

This is the toy.

Joshua sliding (2)

Joshua sliding

Joshua swinging (2)

Joshua swinging

Joshua laughing

Saturday, January 15, 2011

My New Life

I've been thinking a lot lately about how different my life is now, certainly different from what I expected it to be that goes without saying but different now than what it was a year ago and even more so 2 years ago. Last year we had just started on this journey with Joshua, early intervention and therapy, it was all new and the idea that he was delayed was pretty new too.

I view things differently now. I am on lots of sites geared towards moms with kids with disabilities and I keep finding new ones. Stories that wouldn't have touched me as much before really do now.

I had a friend who has a child with Autism, she wasn't ever a close friend but now she's not my friend at all. She works in her state to help parents with children with disabilities yet she completely abandoned me. She's supposed to help other parents yet she criticized me for complaining, I guess she doesn't remember how I'm feeling now, how she felt a few years ago. I know she wasn't ever really my friend in the first place but it hurts more because she has a child with special needs and she wasn't given much hope when she got his diagnosis, he's doing phenomenally now. I could never do to someone else what she did to me. I think I'm entitled to complain more. I am envious of parents who complain about their children misbehaving when Joshua can't misbehave the same way.

I am constantly looking for new apps to download for Joshua's future iPad. We have about 70 apps now, not all for him but most of them are. All are free either lite editions of apps or were on sale so I got them for free.

I sent Joshua with my husband to his family's for Christmas Eve and Christmas Day. Since it's not my holiday (I'm Jewish in case you didn't know) and I decided I really needed the break. I was warned about missing them but is it awful to say that I enjoyed my break? I will admit having the house to myself for that long was a little strange but it was nice. I am now planning a trip to visit my niece and her family in March/April, a weekend I think, my first I hope of many, I hope to make it a yearly thing.

I am going to my first special needs conference in a few weeks. It's local and through Family Connection of SC, I think it will be really good. I know I wasn't ready last year but I am more ready now. I am feeling more and more like this is where I belong, not by choice but by need. This is where I need to be. There is a really great video I saw recently that really sums it all up.

I don't know why I'm on this path or why Joshua was the child chosen for us, maybe one day it will be more clear to me but for now this is where I am. When I can I take breaks to do things I enjoy because too much focus on special needs is too overwhelming for me but in small segments broken up I can handle it. I think I am doing better at handling things a little bit, it was a bit shaky there for a while but I am feeling ok.

Saturday, January 8, 2011

Long time, no post

This blog post has been a long time coming, I think I was scared to write it down because that makes it more real to me. A few weeks ago or last month I guess it was I did something I shouldn't have and wish with everything I have that I could take it back. I did what the genetic counselor said I shouldn't do. I googled Joshua's diagnosis. It scared me, really badly. I also found a site for moms with boys with his diagnosis, that made it worse. I felt a little better after talking to the genetic counselor who told me that Joshua was the 1st to be diagnosed with a very small duplication, the smallest ever reported and just on the one specific part of the gene/chromosome (not sure which one).

I haven't been the same since this happened though. I'm terrified for his future. Before this I just lived day to day doing the best I could, now I'm just going through the motions trying to get through the day. In the beginning, a few weeks ago, I was crying a lot. Now I'm not sure if I'm numb or what, I do still think about it, obsess over and need to stop.

I was upset when we found out Joshua was a boy, I wanted a girl. I got over that though, for the most part. Then we found out Joshua was delayed and now this. What's next? I'm trying to move forward but not really sure how. I really only wanted one child, a girl. I can't help but think about what he's not going to be and that I may not have grandchildren one day. I'm scared to find out if I am a carrier for what he has, that would make me feel worse. I'm not sure I/we could handle having another baby anyway. I feel like seeing a typical baby achieve milestones would hurt. My heart hurts for Joshua but he's happy and doesn't know but I do and that's what hurts.

I've thinking about this post, I know I haven't updated in a long time so I thought it was time but I wasn't ready, still not sure I am now. I wonder how long I'll feel this way, I know lots of kids his age that are doing more than he is and it hurts. I still wonder why me, why him? I don't believe that special people get special kids and I don't feel blessed right now, maybe one day I will. So that's basically where I'm at right now, just getting through the day in one piece.

Oh we are most of the way to getting Joshua his iPad! We have gotten more donations and we're at $400 right now! I want to get the 32GB model with an extended warranty & case so we're looking at $750 so we're more than halfway there. I know we'll be putting in our own money so we won't be waiting much longer. I figure we'll wait until he gets to try it first and then we'll decide if we're getting it now or waiting. It will be February or March when we get to try it for 2 weeks.