I don't know how to let go...

Constantly Wills dad makes decisions that I can't fathom about Will. I don't pretend to understand the reasons, I know from a person outside his brain the reasons seem selfish and totally self serving. I am trying to see another side to the story. I know there are always 2 sides right? But even his explanations don't make sense to me. They still seem self serving to me. Am I too rigid? Maybe.....I don't know.

Over the years I've been told, and again today, that I can't control what he does--true-- so I need to "let it go" and "not let it bother me". How do I do this when what makes me so angry and leaves me feeling so helpless is the knowledge that WILL is the one that pays the price. He is the one who becomes so overwhelmed, overstimulated, overtired etc and them has to take another hit to his self esteem when he has a melt down (usually, but not always, on my end of the week- sometimes resulting in violence towards me) which makes him feel bad about himself and reinforcing his negative thoughts and self talk.

Yes, I usually deal wit the fall out and yes, there is resentment over that. However it is 95% about Will. What he needs, what he does and doesn't get and how it affects him.

Am I overreacting? I'd his dad really being selfish? Am I so rigid in my thinking that I can't see it any other way but mine? I really don't know....but either way- how do I let it NOT bother me so I'm not eaten up inside all the time?

Sick

Last night I came home from working all day to find a mess. There was a vomit covered bathmat on my darkened outside steps (not knowing what it was I picked up the slime covered mat before promptly dropping it again) so, after cleaning that and all the other messes around the house, AND calling my mom to watch Will today (school policy is if he throws up he within 24 hours of school he can't go. ). I finally get upstairs to see my beautiful boy and get his happy thoughts AND most importantly snuggle with him. Sometimes mommy needs it more than he does! This was definitely one of those nights.

He was sound asleep, having fallen asleep while waiting up for me. I have him a kiss on the forehead, turned off the light and went back downstairs with tears in my eyes. Seeing him was what got me through the day. It was just one of those days.

This morning, anyone who knows me knows I'm NOT a morning person!! I came downstairs and instead of the arguments I was expecting- getting dressed, getting off the wii, looking upstairs for his Nintendo DS case- he was so sweet and polite, even thanking me for helping him find his case.

I realized that he's been polite since Wednesday. Being the trooper that he is he went to school last week even though he told me he was having some diarrhea issues in the evening. Even staff remarked at how wonderful he was doing receiving high marks in everything on their tracking sheets. I definitely realized he wasn't feeling well when Will, Tim (staff) and I went for a walk Saturday afternoon and he had diarrhea on the side of the walking/bike trail. Again, he handled it like a trooper and cleaned himself up when we got home.

I hope he is feeling better really soon. I hate to see him sick, although I do LOVE this polite, agreeable and mild mannered child that I have for a little while at least.

Easter Sunday

Here I sit at work wishing I was home with my son. We had our Easter yesterday with my family. Will did a great job, he got stuck over a couple of things though. Took a while to move on, in one instance we had to remove ourselves for a while and sit together, sometimes talking about the issue, sometimes quietly, and then we distracted with what was in front of us (pictures).

I had given him a wii game on Friday. It was an early Easter present because he was doing such an awesome job lately. It was such a hit I'm almost regretting getting it for him. All his free time is spent playing this game. It's a fight to get him to move on to other things. He was also super unimpressed with what he got for Easter from me today. He got a percussion set (with a little drum, tambourine, shaker egg, and a couple other items) hated it. Got him a set of 2 super soakers for this summer- hated them too. Got him some bath toys- ehh couldn't care either way. Sigh....

Hopefully they grow on him. I really wanted to get him stuff he could play with WITHOUT electronics!! The hope is he will grow to like them. I think he was also disappointed at no candy. He got a little candy at my parents, and with his weight out of control I decided to skip it at home.

Yesterday Will and I went for a 1& a little mile walk with staff. It was a beautiful day so we walked outside on the neighborhood bike trail. On the way back Will had severe cramps and was bent double a few times, then stepped off the trail (only one step) and had diarrhea all over the ground. Got back to the car, rushed home and cleaned him up. Poor guy! At bedtime he chose to watch The Electric Company before going to sleep. I was so excited....

I hope he has a good day with his dad today. They are going to an Easter meal at dads girlfriends brothers house? Something like that. I have to admit, It bothers me, Will going to the girlfriends family functions. I don't know why, I know it probably shouldn't, but it does. Is it because they appear to go out of their way to avoid her meeting me? Is it a fear of another woman being as important to Will as me? I really can't say. All I know is that Will likes her, if she is treating Will well then I have no reason to let it bother me. Guess ill just have to keep working on it......

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......