I can't believe a month has gone by

Has it really been a month since my last post? I guess it has. Life has just flown by.

Things have been very up an down for us here in minecraft world. He has become so obsessed with minecraft that EVERYTHING is about minecraft. School has been difficult, good moments and bad moments. Same at home. Today has been a good day. We went to my dr appt this morning, I brought a bribe. I like to have something to pull out in moments like this where I really need him to be on his best behavior. He got a Sonic graphic novel (he just started showing interest in this last night). We came home for a meeting I had with his service providers supervisor- we had to go over the 6 month goal updates.

Then we went to the Mall, where I was having a really hard time walking. He was so concerned, putting his arm around me to help me walk. I do love him so. He bought a Sonic figure with blanket. He was so excited to get it. We then bought lunch for papa (soup) and lunch for granny, Will and me (Chipoltes). We had a wonderful lunch at granny and papas then came home to relax before the new staff arrived. We are now having a lovely time playing Monkeyball on the wii.

Strange days

Yesterday I picked Will up from school early to find him waiting outside his classroom door with staff. He was sucking his thumb... I haven't seen that in years, usually he rubs either my fingernail or his own back and forth across his lips. This has been a calming technique for years but only when he's really upset. So you can understand my confusion.

When I asked him what was going on he told me he didn't know. He was kind of all over the place with staff. Once we left for Disney, he was a perfect child. He listened, he accepted limits (I'm not made of money and Disney souvenirs are very expensive!) and handled his disappointment very well.

Today he made it through school successfully, no real bumps to speak of, and considering his late night the night before I wouldn't have been surprised by one. I did get a call when school ended saying that he refused to get on the bus for home because another child in line called him a jerk and hit him with his bag. I don't know what the whole story is because no teacher appeared to witness the altercation and Will can get stuck on what he perceives to have happened, not necessarily what DID happen. That does in no way mean I am dismissing Wills account, only that I know he isn't always 100% accurate in what happens- although it is true for him. I picked him up and we went home.

He appeared to be in good spirits, but about an hour after his staff arrived he started acting like a baby, crawling around on the floor and making baby noises. He spent almost an hour refusing to walk and/or talk. It makes it really tough to know what's going on when he won't tell me. Problem is? Even though he is high functioning, extremely smart, and has great verbal skills: I think when we have the temporary regressions (I have no idea what else to call it because its clear that its more than a game or play) he really seems to be unable to get or ask for what he needs any other way.

Does anyone else experience this with their kiddos?

Video montage of Disney on Ice

We had a great time and I don't think it could have gone better. Will was so well behaved, listened and was accepting of limits set while there. I brought his headphones sure he would need them when in got loud, but he didn't seem bothered by the noise, just enthralled with the action on the ice. It started with a trip to Radiator City to visit with Lightening and the gang. Then we went under sea to visit with Ariel and her friends. Then off to Pixie Hollow to visit Tinkerbell and the other fairies before we watched the gang from Toy Story 3. Will was certainly impressed with how fast Ken changed his outfits. Lol. A great time was had by this family.

Just thinking...

I'm sitting here at work and thinking back on the last year. It was a year ago yesterday that Will went happily to Spring Harbor. He was all smiles thinking about going to a hospital where they would help him feel better.

For myself, I was relieved that he was happy about going, cautiously optimistic they might be able to help, and completely devastated to lose my little boy for even a short while. I mean, no one can take care of him like me....although I couldn't make this better which is why we found ourselves in this place to begin with.

Will didn't sleep well the night before because he was so excited. He had told his whole class the day before and woke up with a smile on his face and a bounce in his step. I also didn't sleep well the night before, wondering how they would treat him, if he would miss me, how would I survive without him? Without seeing his face at night? Without him crawling into my bed in the morning and snuggling....was it possible to survive?

The morning came, he smiled all the way, he was nice and polite with staff, when it came time to "check in" and to say goodbye he smiled, gave me a hug and kiss and never looked back. When I got to my car I started crying. Then I pulled myself together, drove home and broke down.

I spent the next 6 weeks visiting Will every chance I got, calling every night to make sure he went to bed ok (first 4 weeks bedtime was terrible- lots of locked seclusions and floor holds/restraints). I would be ok at work, but then I would go home and sit.....I couldn't concentrate on anything- tv, books, conversations...nothing. I couldn't bring myself to go upstairs and sleep in my own bed. I put a blowup mattress on the floor of my massage room and slept there.

They were the longest 6 weeks of my life, and the best because they brought a happier boy home to me. He wasn't perfect, we still had a lot of work to do, but he was stronger, he was happy, he was HAPPY!

During the last year, we have still had our share of struggles, and will for a long time to come but I'm really not sure where we would be if we hadn't gotten the strong foundation given to us by Spring Harbor last year. I am truly grateful for everything that place did and gave to my son and our family. I still call and check in with staff there from time to time when I have a question and need some support and suggestions. They continue to be a great support to us.

What a difference a year makes......