Sunday, January 13, 2013

Judgement and Asking for what we want

Well, it happened - that thing that I've been dreading and wondering how I would react. The good news is that no one was murdered or even injured, despite my instincts. We started a swim class at the YMCA on Saturday morning for 18-30 month olds. Most of the time I'd say that you can't just look at Gus and know that he is special needs but when he gets excited he does go all spastic and kind of wave his hands around in a jerky way and make this noise that I guess isn't quite typical. I'd never really thought about it before. But he got that way as they were handing toys out towards the end of the swim class and one of the other moms gawked at Gus. Not one of those, "Hmm, that seems different" observation sort of looks but a, "Oh my gosh! What is that boy doing and gosh I'm glad MY son doesn't do that!" rude way. Seriously, I think I have a tendency to err on the side of thinking the best about people and their actions but this was overboard obvious even to me that is was just mean-spirited. Instead of punching her in the face, which was my initial instinct, I just turned myself and Gus away from her and waited for the teacher to get to us with the toys. But it has bothered me so much ever since and kind of consumed my thought processes the rest of the weekend.

1) I was having a hard time at class anyway because the very first activity was to have the kids stand on the side of the pool and jump into the parents' arms. And things didn't get much better from there. Gus had a great time but I really struggled with trying to do what the class was doing.

2) If I hadn't been having a hard time and having to put all of my effort into NOT punching her in the face, it might have been a great moment to do some education or something with her so I've been trying to think what else I could have done that might have been constructive but so far I'm coming up empty and just keep thinking this is how bullying starts - with parents like this modeling judgmental behavior that gives their kids permission to look down upon others and treat different kids as a "less than". But that makes me even more wish I knew what the answer was to help break that pattern NOW while this lady only has a 2 year old. What would YOU have done?

3) If Gus wasn't having a hard time and didn't notice the lady staring at him, then why am I obsessing over it? Isn't it just my problem then and I should let it go - focus my energies on things that my son does need?

I don't know. I'm still working through some conflicting thoughts and emotions over this. It's a hard time of year for me anyway thinking back to 2 years ago and wishing I could change the outcome for my boy. Yes, logically I know that there's no use in doing that to myself and yes, we have a lovely child and I wouldn't trade him for anything. I just wish I'd have given him a safer place to grow and develop and I can't help but wonder "what if" on so many things that I did that maybe if I hadn't done them it wouldn't have turned out like this. Most of the time, I really do believe that things are just as they are meant to be and that God is with us. It's just plain hard sometimes so please forgive me for the self-berating and self-pity cycle that is me in early January. It's better this year than it was last year and I'm sure it will continue to get better with time.

On a lighter note, Gus and I get to celebrate our birthdays together this week. We have way too many presents for him but we're just so excited to see him enjoy himself!

He's started using his words to ask for what he wants these days. And that includes things that aren't in his sight now, too, which is a transition for him. He'll say, "Milk!" in the middle of playing. He MUST have his Choo (Thomas the Train) for just about everything including taking it to bed with him, riding in the car, and going down to Grandma's. And, a testament to just how much he runs around to class and therapy, he has been saying, while we are out and about, "I want to go hooooome." He says "home" in the cutest, longing way. He had Help Me Grow (our state's Early Intervention program) on Monday, class Tuesday, and to Fort Wayne for ABM on Wednesday and Thursday.

I was doing some work stuff on my computer earlier tonight while Gus watched some TV and I heard him say, "That's Me!" only to realize he was singing along with the Caillou song. We are so grateful that we don't have to add communication and speech to our list of issues. I delight in hearing him talk and make requests even if it is, "M&M's please, mama!" Now, really, how can I say "no" to that?

Here's the only video we got at ABM this week with Jon Martinez in Fort Wayne, IN. It's not the best angle to be able to see but Gus is pulling himself forward to get to the musical toy. This is how his army crawl looks right now.

Thursday, January 3, 2013

Gus's First Day of School at the Perlman Center

Gus had his first day of school today and it was a great success! He loved it and the OT said she has never had a brand new class last the whole 2 hours and 20 mins on the very first day. All the boys had a great time.  We think this is going to be a great experience for Gus. Plus, at least 2 of the other boys live very close to us so they will be in school together for a long time to come.

No more diaper bag. Our big boy has his own backpack now

Toy Story shirt and backpack, Mickey Mouse socks, and Elmo sweatshirt for our first day outfit

The Speech Therapist with Gus on the swing. He loved pushing the buttons, of course

The OT swings even higher on the swing! Look at that smile!

Wednesday, January 2, 2013

Happy New Year 2013!

December 2012 found us getting ABM lessons AND sleeping in our own beds - what a treat! Mike Davis lives in Arizona but his parents are about 30 minutes from us and he was "home" visiting for Christmas for several weeks. We had 2 sets of 5 cluster sessions with Mike and loved it! I am still in awe when I am handling Gus or changing his diaper by how loose and wonderful he feels. 

This morning I went to get him out of his bed and he was on his belly pushing way up with his hands so that his little head was up to greet me! And he's been doing more attempts at some army crawling. 

Mike noticed how Gus goes spastic when he's trying to initiate movements so we're hoping that some of Mike's work on lessening that will be evident in the coming weeks.

Today I decided to put this fork in his hand for the first time ever and see how he did with his mac and cheese. It was an amazing success! He ate nearly the entire bowl of mac all on his own! We really need to start just giving him the opportunity to get to the next level of things. Next, we have to work on more sippy cup and NO Bottle!

And our big news - Gus has his first ever day of school tomorrow! We will be attending the Perlman Center, part of Cinti Children's Hospital, for their EI program every Tues and Thurs morning. We are so excited for Gus to be around some kids his own age. We think the peer motivation will be huge for him. There are 3 other little boys in his class. Each of them is ahead of Gus is some ways, and Gus is ahead of them in others, so I think it will be a wonderful mix for the boys to learn from each other. Maria will be attending each 2 hour and 20 min class with him. There are 3 therapists present - Speech, Physical, and Occupational - plus the teacher and an aide. We will be declining some of the therapy offered so that we don't interfere with our ABM work but we're really excited about the group activities, their focus on technologies (Gus loves electronics!), their support in helping us select and work with our insurance to approve adaptive equipment (we need a bath option in a bad way and we may get a wheelchair soon), circle time with stories and songs, craft activities, and sensory play (like playing in a big bunch of rice). 

I wish I could say that we are all healthy and starting the new year off vibrantly but it's not quite true. It could be much worse, though, so we're thankful for what we have.

If you pray, please join us in praying for our little fellow preemie and CP friend, Pierce, who is seeing lots of specialists to determine the best surgical option for a shunt in his 4th brain ventricle or some other option that will alleviate the swelling they found in his MRI. January is going to be a tough month for P and his parents so he's in our thoughts a lot. 

A very happy new year to all of you! We can't wait to hear how your 2013 is going!

That's the underside of our German Shepherd's, Esther's, chin, and her tongue lapping Gus's face

In a way, these fuzzy pics tell more of the story than the clear one! Wish you could hear his giggle that went along with this!

Such a beautiful snow we got last week!

Can you hear Schnitzel's thoughts on this Christmas merriment?

We never did get an actual smile out of Gus for any of the 4 Santas whose laps he adorned.