Funny faces

I love funny faces..... I make them all the time. My mom used to tell me my face would freeze that way. Anyone else's mom tell them that? Let me tell you something- it's not true.

I have an app on my phone and iPad called Faces I Make. It's a lot of fun where you can take different items and put them together to make funny faces. Well, trying to come up with coping strategies for Will, and different activities I decided we should have a "real" version.

So, I found some items- foam cut out, glass pebbles, chip board, wood pieces. I will continue to add things as I find them....buttons, etc. but for now we had a good time making faces and guessing what emotion each was portraying. We each did 2- Will, staff and myself. Can you guess which ones Will did? He guessed the right emotions on ours.

My son is simply amazing

Seriously, my son is amazing, they don't come any better. ( I won't offend anyone by saying he's better than any other child because we all feel like ours is the bet. But he certainly is the best for me.). While there are always challenges, and I don't always appreciate my blessings as much as I should - I am getting better though - moments come along when Will blows me away.....

My 10 year old boy with ASD called up to me yesterday morning asking if I had seen his FB post. I asked when he posted it and he said "just now". Well, no, I haven't seen it. I turned on my phone and checked it out, I was blown away with the insight and maturity he showed in what he wrote. He had seen I liked a page "Autism Angels" so he liked it too and shared one of their pictures and wrote the caption I shared further down in the first picture.

Then I came home tonight to have him hand me this letter he wrote for me at school... And then his staff Carrie shared the letter he wrote for her. My son has a way of articulating himself in a wonderful way sometimes he leaves me speechless.

(He is back to completely identifying as a girl now which is why the envelope says Willow and not Will. Just in case you were confused)

Seeing growth

Most of the time it is hard to see the things right in front of your face. It's important to have input from others, or you might miss something important.

When we were approved for case management 2&1/2 years ago, and then got the BEST CM out there (I'm convinced!) she came over one day and asked "How long has Wills breathing been so loud?" It wasn't until that moment I actually heard my sons breathing. It was so loud and labored. He sounded like a Sleestak- anyone remember that show? That is all I heard! I realized that he would be asleep in his room with his door closed and I would be downstairs with the tv on and I could STILL hear him breathing!

We went through a battery of tests including sleep study and allergy testing. His breathing got better.....then our CM pointed out he has exceptionally small thumbs so we had genetic testing done. Nothing came of that, but now I see a short thumbed Sleestak when his breathing gets bad.

As far as his interactions with peers, I've heard good things, but not a lot. He also has no friends that come over to the house to play any more. So today came as quite the pleasant surprise. At my biweekly meeting with his social worker she told me that last week a classmate was struggling in the hallway, Will was there as well as some kindergarteners when this other child escalated and had to be removed. One of the little ones said a "bad word" (I'm told it wasn't a really bad word, more like damn or crap) and Will spoke very nicely to this kid and told them they shouldn't use that word. That it is an adult word, and even adults shouldn't use that word. Then he reiterated "so don't say that word, cause you will get in trouble and I don't want you to get in trouble." She also told me that the teachers have all remarked that Will is much more present in the halls and engaging with others around him. It's like he's a different child from even last year! Even I have seen some of this when I am going to a meeting at the school, he says hi to every teacher and every peer he knows when walking down the hall.

It's so wonderful when you open your eyes and can acknowledge the growth that was right there in front of your eyes all the time.....

Sickness has found my home

My son seems to have a cold today. It's been coming on for a few days now, I've listened to the increased congestion and the clearing of his throat more often. But it finally hit him today.

His voice is raspy today (is it wrong of me to love the way his voice sounds?). He is definitely off. He did a great job when staff were here. As the day went on he started fading and became less able to deal with life. He didn't take his shower tonight claiming that he didn't have the strength. So we went to bed early.

He sounded so congested I made him use a Vicks Stick (a menthol vapor stick). If you look at the first couple of pictures you can see how well this did NOT go over with him. I wrapped Will up in his quilt and put him to bed. He told me after reading and happy thoughts that his whole body hurts. He has dark circles under his eyes. I hope he sleeps well tonight, and that it helps.

What a difference a minute makes

Will started out this morning with minimal struggles, just the usual...

He came home from school with reports of an awesome day. Yeah Will! Woot woot! Staff came 20 minutes later and Will excelled at using his words and doing everything that was asked of him. He chose to go support his classmates in the cabaret. We made his schedule, when it came time to leave for the cabaret everything changed in an instant.

He wanted to get there late so he could play for 10 minutes before. Staff deferred to me to take the lead with Will. We sat down and talked. I explained that we needed to leave on time to find parking, find our seats, and because its kind of rude to arrive late. Will can be so empathetic at times, and at others.....well....not so much. He started screaming about how he didn't care about the other kids because they all bully him. My heart broke right them and there, however, by talking quietly and calmly we were able to figure out the REAL reason for the melt down: he desperately wanted to play 3 person minecraft while Tim was there working with him and he hadn't been able to play it today with staff/me. We came to a compromise and just like that, in another instant he was fine.

We went to the cabaret, came home early and played minecraft. When it was time to move on to other things (meds/shower) we turned in another instant! What a crazy night tonight has turned out to be. I let him hit me with a pillow to get out the frustration. It worked quickly, then he got hurt, and knocked off the wii sensor bar off the tv. Another melt down....more hitting me with a pillow which didn't work quite so well the second time around. Sigh...

We (by that I mean I) decided that an early bedtime was warranted. So we went upstairs, used our new sensory light, read a little from our new book, did a blanket wrap and got through our happy thoughts.

May have been quite a roller coaster of a day, but we ended it well....and isn't that all that REALLY matters?

Haircut

Wills hair was getting quite long, to the point where it was in his eyes and his "eye tic" was back. (He does this weird thing with his eyes where he opens them REALLY wide and he looks a little creepy)

His dad has taken him for his last several haircuts- I just don't have the money unfortunately - and it usually doesn't go well, when it does- he usually has to bribe him with something. So, I asked Will, he said yes. We then looked into what Snip-It's has to offer. Will made the decision that he wanted short spikes and some color streaks. He was so excited when I said yes to everything he wanted. (No bribes needed!)

I talked him into getting his hair washed while there. As he climbed up in the chair and leaned back he looked terrified and even was able to tell me he was scared. I told him that getting my hair washed was my favorite part, he decided to trust me and I watched his face go from scared to pure enjoyment. An "oh yeah" even escaped his lips.

He was very clear telling the hair stylist what he wanted, and was happy with the outcome. I was very happy as well, but a little sad.....my little boy disappeared before my eyes and a young man emerged.

Mixed feelings

My divorce was final yesterday, I am so very happy it is done. Please, don't misunderstand, there is still sadness, no one ever gets married hoping for divorce. It is a hard and painful process for all involved. Our marriage wasn't a happy one for many years, he asked for the divorce for reasons I won't get into here....it doesn't matter anymore and I'm trying to move on, not live in the past. I have however had almost three years to gain some perspective, acceptance, and forgiveness. This was the right outcome no matter how we got here.

As I begin this new chapter in my life I have reminisced over the past. There were certainly some good times amidst the bad, but I couldn't help feel really sad (and thrilled) about today. Wills staff came over to work with Will, we had been prepping him for a few days that they would be spending part of the day outside to get some fresh air and exercise. We gave him the choice of finding a place to go sledding or building forts in the back yard. He chose forts. I have to say I was thrilled. Some of my best childhood memories are of my brother and I building snow forts and tunnels and then having snow ball fights. I hollowed out an area behind a snow bank on one side of the driveway and Will and his staff Tim did the same on their side. (Although they got fancy and made a tunnel too)

During this Will kept running in between the cars and throwing snowballs at me, he couldn't throw all the way across the double wide driveway (unfortunately I throw like a little girl and couldn't either). We had so much fun and we were laughing the while time. I had a moment of profound sadness though, this was the picture I always had in my head of Will, his dad and me playing in the snow, not with Wills staff. We don't always get everything we think we want or see for our children and ourselves. But you know what? Will is showing an interest in playing in the snow for the first time, he was laughing and smiling during a difficult period in his life. So what if it doesn't look like I had always hoped? He was happy, we shared and made a happy memory we can carry with us, he was outside and loving it. He even loved getting me in the face a couple times with the snowballs.

Things change, I have chosen to accept those changes with as much grace as possible, I'm sure I will still mourn those things that will never happen, but I will not become stuck by them. I will rejoice in the new opportunities that will come into my life because of these changes and know that I am ok. WE are ok. The possibilities are endless, and I have to believe that we have opened ourselves to even better experiences in the future.....

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 ;~})