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?

A New Year...

It is January 3 2013 and I finally have a moment to sit down and contemplate my last year, and really visualize this year I find myself beginning. Last year was rough in many ways, and in many more was quite a blessing.

The year started with Will in crisis, filling out paperwork and then waiting for the call from Spring Harbor (children's psychiatric hospital). The call came, none too soon, and we prepared for Will to go stay at the hospital....he was so excited to go to the hospital to stay so they would help him not hurt so much all the time. So as you can see, it was MUCH harder on me than it was for Will. February 2 was the day, his dad met me at the hospital to do the admitting paperwork/meeting. We went on a short tour showing us the ward Will would be staying, found out when we could visit etc.... Gave Will hugs and kisses and left with a broken heart. I was there visiting everyday, (except Sundays as I work all day every Sunday and his dad was there on those days) on days I had to work, I would go and have lunch with Will in the cafeteria. This was the longest six weeks of my life, but Will was thriving... I ran out of oil and spent almost a week with no heat in my house but I consoled myself that at least Will was warm at SH.

Will returned home mid March so much happier than he went into the hospital. We had services for him in the home and his classmates were happy he was back. Will had learned how to stand up for himself a little better at school, and he knew what types of behaviors he was willing to be around and what didn't serve him. This caused problems at school, his best friend still struggles and didn't like that Will didn't always choose to be around him when he was struggling. So he and another child started to bully and give Will a hard time at school.

I served my husband with divorce papers late March, which made him angry and wondering what other unpleasant surprises I had for him. (He had left me over 2 years before for a 24 year old girl, was in and out of relationships with younger women, and was finally in a relationship with an adult woman for 2-3 months- so he WASN'T alone, but all this had been his choice, not mine. I just needed to move on and if he wasn't going to file for divorce than my hand was forced so I could finally move on with my life.) It isn't final yet...... There seems to be one stumbling block after another for him, always a day or two before we have a court date to finalize. Can I say BEYOND frustrating?

Will started fifth grade this year, he asked to join the drama club at school! This is the first time he has taken an active interest in joining a club/sport/whatever....EVER! So we let him join, it quickly became apparent that it was very overwhelming for him to be in the group, so we rearranged his staffing services so that staff was able to support him during drama. Unfortunately he has since refused to continue as it is still too overwhelming for him. I am hoping that in a week or two he can be coaxed into trying again with staff providing more support for him. He continues to be bullied at school, they say they are working on it with an anti-bullying program at the school.

This summer I had my worst MS flare-up ever and was down for the count for about a month and ended up on 5 days of IV steroids. (I hate steroids!) My work has had it's ups and downs. My manager (who I enjoyed working for but who was extremely burnt out) quit, I got a new manager who was wonderful, but had come back from medical leave early and wasn't equipped to work in new houses, I tried to support him as much as I could but I felt more directionless than ever.....In October I was called into the office and told that my manager was out on medical leave again and would not be coming back. I continued the best I could with no direction at all, a week later I was told they had promoted someone else to be the manager and I was being pulled out of my homes, away from my clients, and put in new programs with 4 new clients. I was upset, I didn't want to leave my clients...I was given no reason why I had to move....had a new manager who was so busy with openings and overworked that now, on January 3 I still have not had the opportunity to sit down and talk with her about what her expectations are for me. 2 months went by at my new houses, I had a worse schedule, lots of stress about who would watch Will on Wednesday nights as his dad doesn't watch him on Wednesdays (only Sunday-Tuesday) because he is at his girlfriends. My parents offered to keep Will wednesday overnights which was wonderful and Will enjoyed it, but it messed up his routine and sleep pattern which was already in a bad cycle. Will would come home and work with his staff, at the end of her shift she would drive Will 20 minutes away to my parents. Over time my dad offered to drive Will back in the morning so I didn't have to drive out there every Thursday morning before school. Well, just as everything was falling into place and I was getting comfortable with my clients and their needs/routines I was called into the office again and pulled to 2 new houses, 4 new clients- same manager. I started 2 days ago. The schedule is minutely better, a lot more physical work, but less of the mental..... We shall see how long I am allowed to stay here before I get pulled with no explanation....

The holidays are always stressful, Will even threatened himself with a knife to his neck last week. I hoping this is only because of the added stress of holidays and vacations, but have no fear, I have locked up all sharps and am consulting his drs etc....

As you can see, it's been quite a year. I am not sharing this for anyone to feel bad for me. This is to show what Will and I have overcome. We survived all this, and have come out stronger. This is not to say I was grateful for the struggles while they happened, but looking back I am so grateful for everything we have gone through, struggled with, hated at the time, celebrated. Will for all his struggles lately is still solo much better than he was a year ago. He even bought me a Christmas present for the first time EVER, which makes this the best Christmas ever for me even though I had to miss my family Christmas for work on Christmas Eve and day. My divorce should be final tomorrow (fingers crossed!), and this is a new year and who knows what it will look like....personally, I am putting out the energy that it will be a great year for Will, and me. I expect struggles, grief, heartache and worry....I expect there will be much more celebrating, laughing and loving than the other stuff. I will take it all in stride (as much as I am able) and be grateful for it all. I will embrace this life of mine, and do everything in my power to make this Wills best year ever!

I had planned on no New Years resolutions this year, but as I write this I realize that I have one....to make this the best year ever for my son.... Happy New Year every one, I hope this year brings you health, happiness, peace and blessings (as much as I wish it for Will and myself ;~})

Struggles

Yesterday Will ran away from school. This is the second time he has done this. The good news? This time it was different.

The first time he ran all the way home without the school knowing he was gone. (We live a mile away from the school with some very busy intersections). This time an Ed tech followed him. He got almost half way home before the principal and teacher caught up with them in their car. He refused to get in the car until they promised to bring him home. This is where I got a call and asked if they could bring him home.

Will was able to express his anger and frustrations with school. He told me and teachers that he has such a hard time holding it together all day at school to maintain his safety record that he falls apart at home and that is why he is so mean to me. He told us he hated not being in control at home.

Well, be was very argumentative about going back to school, but I told HIM that it was my expectation that he finish his school day. He finally relented and returned with the teachers. He finished on a positive note, and even had a good day today.

We have decided to lighten up on the expectations at home to give him a little more breathing room after a hard day at school. We shall see how this works....

Well enough about me...

What do you think about me? Just kidding, but seriously I want to talk about my amazing son.

Will has really been doing a fantastic job. He has his struggles, but overall he is doing great with all the extra demands being put on him. He spends most of his time at school up in his mainstream classroom. He is writing poetry, which his teachers like so much they have him get up in front of the classroom and read it to the class. (And he does! How freaking awesome is that!!!). He is still having a hard time with the other students. Sometimes he is bullied, other times they are just being impolite. The teachers are working with him to know the difference and how to deal with both instances.

At home he is becoming very independent. His staff is working with him on making his bed (including changing his sheets), folding and putting away clothes, cleaning bedroom, vacuuming etc. he's doing such a great job, but he struggles with the demands.

With all of this, he has added to his stressors. Although I hope it becomes a positive outlet for him: he has joined the drama club. I almost fainted when he told me he wanted to join. I got the permission slip and filled it out. He turned it in the next day. Today was his first day. Unfortunately I was not home to hear all about it and was unable to call him to hear all about it. I was told by his dad that he did well and enjoyed himself. I can't wait to hear all about it in the morning. I'm so proud of my son for taking the initiative and try new things. Who knows, he may follow in his mother and uncles footsteps and love the stage.

Let the journey begin.....

I hate bullying

My son came home from school yesterday and told me he had a good day. Then I got a call from the principal who told me that another child was bothering Will. When he asked the child to leave him alone (the child didn't stop) and then got up to leave himself, the other child kicked Will hard in the groin.

Now I'm so proud of Will for how he dealt with the situation. The principal was proud of his response and how he dealt with the pain as well. But my heart just breaks for my son who has to work so hard just to get through the day, and has to deal with mean children that not only verbally- but now physically attack him. The fact that he kept his cool yesterday shows how far he's come in the last year.

I'm really tired of Will being targeted at his school. It makes me so sad that there is so much bullying in schools. I was wondering last night about bullying. When I was a child I don't ever remember being talking to about bullying. Is that because it didn't happen back then, at least to the degree that it happens now? Or is it that people just assumed that it was just "kids being kids" back then?

School update

Will has had two very successful weeks at school. He has done so much better than I could have hoped. He has spent the majority of his time in his mainstream classroom. This is amazing considering he hasn't set foot in a mainstream classroom for over 2 years.

He is still doing ok, but I do know that he is struggling this week (pretty typical for him). He has been talking about hating himself again. We are not getting his notes from school so I am not entirely sure what is going on as far as how much time mainstreaming he is capable of doing this week.

My schedule was changed on Monday to cover a call out. Because of this, I was able to be home early enough to spend time with Will. There were lots of giggles and smiles. Made my night.
When it was time for bed, we did our bedtime routine: read for 20 minutes then Will shared his 3 happy thoughts.

1. I love you
2. I'm so tired that I should get some really good zzzz's
3. I got to meet Tony today (Tony is a new staff)

Then he immediately went into his bad thoughts. (he's never done this before). He shared that he hates himself and he had a hard time at school that day. This talk breaks my heart. After he shared this with me I made him tell me his happy thoughts again. I told him we were going to go to bed with happy thoughts so we would have happy dreams. His mood quickly turned around when I asked him what his first happy thought was and he told me he loved granny. I acted all upset and he kept repeating he loved granny. He got giggling and went to sleep in a happy mood. Mission accomplished. However he is still struggling at school (again, they aren't sending the notes home so we don't have the full picture, but they did write that he has been doing a lot of negative self talk this week and they are working on strategies for positive self thinking) and I'm hoping he can turn it around and use some coping strategies.

I hate bullying

Yesterday Will came home from school so proud of himself. He had earned a "student star" for ignoring a couple of other children who were trying to bully him.

I'm so proud of him too. At the end of the last school year I kept getting notes from school talking about how the teachers kept talking to Will about tattling. The second to last day I found out that a couple of the kids we giving him a hard time and when Will would say something to the teachers HE would get in trouble for tattling. Really? Are you freaking kidding me? No wonder I hadn't been able to get a straight answer from the teachers!

When summer school started Will told me a few days into it that he was having the same problem-- low and behold I look at the daily notes and my son is in trouble for tattling. AGAIN. So I went into the school the next day and tracked down the social worker (she's new as of summer school. I had met her before when she was an intern a few years ago with the social worker I've worked with since kindergarten.) and told her what had been going on and how Will's dad and I had taught him to go to the teacher when he was being bothered and unable to handle the situation appropriately himself. I explained how confusing it must be for a child who already has significant deficits in social skills to be given such mixed messages. His parents are telling him how to handle a difficult situation and then his teachers are making him feel and telling him he is wrong for doing the right thing?

I have to say that the bullying appears to have started when Will came back from Spring Harbor. He learned such great skills while there. One of which is his new ability to see behaviors in others and know that he doesn't want to be around said behaviors and appropriately ask to not be around those behaviors.

Because he didn't want to be around a friend when the friend was struggling with difficult behaviors ( I believe because Will didn't want to be triggered into behaviors of his own. Does that even make sense?) and asked to move seats. He even told that child he was still his friend, he just needed a little space. This is when things started to change and several of the other kids started be mean to Will.

I must say, as a mom I want to go into that school and slap these kids, then yell at their parents for raising bullies. This of course is the overprotective side of being a mom of an ASD kid, or any kid I assume. The rest of me realizes that all the kids in that classroom are there for a reason. They all have their struggles and are doing the best they can and learning on their own timetable. Their parents are also doing the best they can I am sure. I have met most of the parents and they all seem to be very nice people and working really hard to do everything they can for their kids. But sometimes........

So, I woke this morning to find an email from Will's new teacher (another change I wasn't thrilled with but may just be one of the best changes so far- see? I can accept change...) telling me about how a couple of the other kids have been bullying Will both days of school and how Will is doing a fantastic job ignoring and earning stats for such good ignoring. It was also great to hear they have implemented a bullying program (anti bullying program?) in the classroom and they have been working every day to teach these kiddos why it is wrong to bully and how to deal with their differences. I am super impressed and hop this is a sign of a great last year in elementary school.

First day of school

Today is the first day of fifth grade. I'm so excited for Will, and so very nervous too. I believe I've already talked about all the changes in his classroom. (he is in a contained classroom with the other children who struggle). There is a new head teacher in the room, all but one of the Ed techs in the room are different. There is a new social worker, the room is set up differently, the board for the "level system" which has been so very successful the last 2 years is gone. And last Friday I got the bus schedule. Will has been put back on the regular bus in the morning. (he has been on the small "special Ed" bus for the kiddos in his classroom for the last 2 years because the noise etc on the regular bus was way too much for him.) Don't get me wrong, this schedule works best for me, I'm just not so sure about Will, and it would have been nice if they had discussed this change before they implemented it. The communication from the school has been sorely lacking since the end of last year. Making me worry and giving me a sense of deja vu. (the first 3 years at this school was a battle, the school not doing what they should and lying, covering up and down playing. Sound familiar to all you parents of special needs? Just hoping they are not regressing!)

Will woke up VERY early again this morning. While getting ready this morning he put on his shorts backwards. Unfortunately they were jean shorts so I made him change because it was so noticeable. This started a mini meltdown. We regrouped fairly quickly and moved on.

It didn't help that when we first came downstairs and checked on the rescued bird it was alive and well, but an hour later had died. Will was not happy. He handled it better than I thought which was good, but we shall see if it affects his day. Although there are so many triggers today who really knows what might be the cause of a difficult day. Hopefully it is a wonderful day though.....

So it begins again....school starts and I start jumping when the phone rings because I expect it's the school telling me about the struggle of the moment. Or that he's so out of control I have to come pick him up. Now, I haven't had more than one call since he came home from Spring Harbor last march. I'm also terrified to look in "the notebook". Which will outline every struggle, but also highlights every achievement.

So, we will see how today goes and we will hope for the best. Good luck Will. Study hard, you'll need to if you want to be a veterinarian. I love you and I'm so proud!

School starts soon

School starts for Will in three days. Today is my last day with him until I see him off to school Tuesday morning. Tomorrow I will drop him off at his dads. I hope they have some fun plans over the next 2 days.

Today I took Will to one of his new favorite places. Spring Point lighthouse. Not only was I happy because it made Will happy, but also because it is the first time I have felt well enough to be out and about, walking and enjoying the outdoors.

Today is also the first day we haven't had a meltdown since we went school shopping on wednesday morning. I'm hoping that the physical activity and being out doing something he enjoys helped with that.

One problem we've been having for a while is his sleeping cycle. He is a couple of weeks in to waking up between 1-3am for the day. He does sometimes fall back asleep after an hour or so, but either way he's not getting the sleep he needs and it's showing, from his mood swings to the dark circles under his eyes. I have to admit this is not a fun part of the sleep pattern.

Its been a wonderful day today. Tomorrow it's back to work a 12&1/2 hour day. At least I like my ladies. That makes it worth while.

On a side note: the update is the divorce is unfortunately not finalized. My hopefully-soon-to-be-ex finally agreed on the final 2 points we had to settle. Unfortunately it wasn't until 1&1/2 hours before we went before the judge. So the final settlement was NOT written up in time, and the judge wasn't happy that a few of the finer points of the house part of the settlement wasn't clearer. So, my lawyer will draft up the final settlement and my ex and I will review it and hopefully be able to agree with it. Then we will go back to court. They are scheduling the final court appearance for one month, but if we can agree and have it finalized before hand we can do a walk in and be done sooner. That way I can finally close this chapter on my life and start a new one.

Pictures are in the following order

1. Will walking to the lighthouse
2.school clothes. Note the jeans-can't tell you how excited I am about them.
3. Lighthouse
4. Will looking at the ocean
5. School supplies. The hippo is actually the pencil case he picked out.

I hope you had a beautiful day.

School shopping and Meltdowns

I took my son school shopping yesterday. It went very well, I bought the obligatory sweatpants (all he has worn for 3 years +) but I was able to sneak in a pair of jeans and a pair of cargo pants as well. Now we will see if he will wear them when the weather cools off enough. Just the fact I was able to buy them with Will with me is amazing to me, growth is possible people. Trust me, if Will can grow as much as he has I the last 6 months, almost anything is possible.

We also bought sneakers, I was getting frustrated because I couldn't find his size in the store, he became adamant about the style sneaker he wanted (they light up when he walks). I was so pleased that the last pair I spied were in his size. He willingly tried them on and announced they were perfect. He even put them on later that day when he went to play with the neighbor kids. This is huge as sneakers have been a major battle in this house. He loves his crocks and hates tying laces because it is so difficult for him. Every day last year was a battle of wills as he tried to convince me he could wear his crocks to school and I patiently explain that "this year the rule is you have to wear sneakers to school.". This is because he has OT at school and recess. He has tripped wearing crocks and has therefor refused to participate in recess as well as struggled in OT. We found once we implemented this rule he was more successful in OT as well as more active at recess.

We also picked up socks and undertheres as he badly needed both. We got the obligatory school supplies as well, the pencil case, the pencils, markers, crayons, glue sticks notebook and binder. He did so well at the store.

And then we came home......

The melt downs started. None of them lasted overly long, but there were a LOT of them. Everything set him off. Today has been no different. He did get to meet his new teachers last night at the open house and have ice cream. The new teacher in the day treatment room pointed out a third computer which interested Will, but the changes were many. Maybe too many? I don't know, only time will tell.

The start of school is definitely causing much anxiety for Will, and it doesn't help that his sleeping cycle has finally taken a dive. We have been in such a good sleeping pattern for so long I almost thought he had outgrown "the cycle". How foolish am I? I am so excited for the rest of my weekend.

On a completely unrelated note: tomorrow is my court date for my divorce. I'm hoping this is it and I can begin my life as a single woman. Here's hoping?

Finally home

So, as you can guess, Will came home today. The smile on his face when we left SH was so wonderful to see. We went to lunch at Friendly's where he made great choices on food.

We then picked up his meds and went to school. His friends came right over and gave him hugs when they saw him. I picked him up 2 hours later to hear how awesome his time there had been.

He was doing great. He made a great choice to play with Legos so he could use earned time later playing webkinz with his granny on the computer. His dad came over to take him out for a while and stated they were going back to SH because dad wanted to get his iPod which was left there. Will really didn't want to go, he became upset but was able to stay safe. I jumped in and helped Will use his helping board and make safe choices. He left with dad (not happy in the least) but he went calmly and hopefully was able to turn it around quickly. I am so proud of him. I love the plan that SH has set up for him. I think we will have a lot of success if the school and dad can follow through and implement the plan throughout the day, EVERY day. I hope they can, but if I'm really honest, I'm really afraid that dad can't/won't do it. He only implemented a few elements of it in front of me, and not even the most important parts.

Well, it's out of my hands. I can't control others, only myself. I will pray and do everything I need to do to make Wills transition home a great one, where he feels safe and happy. Please God, hold him in your handstand take care of him.

These pictures show how one bag of clothes/items goes into the hospital and comes out with 4 more bags. Then a picture of Will showing me how Ted he was to leave SH. Then a picture of him tying his shoe in front of Friendly's. Then drawing on his placemat inside Friendly's. What an amazing little (or not so little) child of mine. I love him so.