It is well it my soul

Will and I have had a pretty rough year.  In fact, since March things have gotten really tough and extremely scary for me.  We have had more involvement with the police then I even thought possible.  2 assault charges on my sweet, not so little 11 year old child. A trip to the emergency psychiatric ward of the local hospital for observation, and denied services from the state because we clearly can handle the situation ourselves............
On top of all this, I have had many other issues come up in my life- car, financial, relationship, etc....the list goes on and on and on.  I was hanging by a thread trying to fight for my son, trying to fight for my clients, trying to pretend like everything was fine when it was in tatters on the ground around me and I felt abandoned and alone.  (Only because I'm stubborn and don't ask for help, not because I don't have family and friends who love me....just to be clear.)
Last week I packed up for a week at camp.  Empire Grove.  I have been going to this camp for 35 years.  I have not missed a camp meeting.  However, this year felt different as I was packing, as happy as I was to be going back, I was also angry and frustrated that we were going.  Will was SUPPOSED to be in a temporary out of home placement.  An intensive 2 month program where his dad and I were to be intensely involved to give him the help he so desperately needs. 

So off we went to camp, I brought everything into the camp, unpacked, opened the windows and settled in fully expecting to pack up at any given moment and head home because Will couldn't handle being there for whatever reason.  I spent the first 24 hours on edge...but gradually the peace of the grove seeped into my soul and I relaxed.  The theme of the week was wellness.  Wellness of our mind, body and soul.  Who needed that more that me?  Or Will?

First I would like to address the one negative moment in our week- it was a doozey.   Staff showed up Wednesday for his second shift at camp.  Will was a little on edge, but I decided to listen to the staff supervisor and let staff handle Will.  I went back to the carnival for a few minutes.  However, I was put in jail while there by a precocious little 4 year old boy.  While serving my time ( a whole 5 minutes) I received a call asking me to come back to the camp.  Staff had some scratches, Will was screaming and out of control, and I arrived just in time to step between the two as Will lifted a cast iron door stopper and threw it at staff.  It quickly de escalated after that.  He apologized for his behavior,  he listened, and had a great day for the rest of the day. 

Now, I have to get into the wonderful parts of the week.....as angry and frustrated as I was, I must agree that hindsight is 20/20.  While I sometimes have a hard time believing,  in this instance I wholeheartedly believe that thing have worked out as they were meant to have.  While I railed against God, and questioned Him.  While I doubted and turned my back......He was taking care of us and doing what was needed to be done.

Will is now 12 years old, he has been attending Campmeeting at the Grove since he was 1 week old.  This year while at the Range Pond picnic he played with the other boys from the camp for over an hour.  This may not sound like much to most, but to this mom who has watched him try to play with the other boys for years and be rejected time and time again, until he eventually stopped trying......it was so huge.  I stood on the beach and cried, my heart was full.  THIS is why we were supposed to be here.......

That night, after I attended vesper services I came back to the camp only to be led inside with my eyes closed.  I was told there was a surprise waiting for me.  With no small amount of worry, I let Will lead me into the camp, I opened my eyes to a beautiful note and a sandwich he made me on his own, for no other reason than to thank me for being a wonderful parent.  THIS is why we were supposed to be here........ 

Will wanted to go on the hayride, we went on one, and when we discovered it was not the "scary senior youth ride" I was told in no uncertain terms that he was going on it with HIS FRIENDS, and I could go back to camp.  THIS is why we were supposed to be here......

And towards the end of the week when he showed me a note he got from some of the other senior youth kids telling him he was the coolest kid at the Grove, they were glad he was in work group with them, and that he played with them at the pond.....the look of joy and acceptance on his face........THIS IS WHY WE WERE SUPPOSED TO BE HERE...........

As for me, I was able to nurture my body, mind and soul throughout the week through friendship, communion, worship, walking, laughter, good food, rest and song..........I am now ready to continue my journey fighting for Will and his needs, we are in the process of reapplying, I am hoping to hear in the next day or two if he was approved.....fingers crossed.......

In the meantime. .....it is well, it is well, it is well with my soul.

Learn to blow your nose for crying out loud!

Seriously, I can blow my nose, it's easy, it's something we all take for granted until we have children.  Add autism to the mix and watch out!  My son is almost 11 and refuses to even try to blow his nose, the frustration level surrounding this is through the roof. To hear the snuffling constantly for hours, all day if he has a cold or allergies and is home all day drives me up the wall.  Then comes the clearing of the throat because of all the junk that is stuck back there. If it is really bad, then comes the vomiting. Yeah!  Got to love that right?  WRONG!!!  He gets so much junk in the back of his throat that anything and I mean anything can trigger his gag reflex. 

It doesn't help that Will doesn't listen...he knows what will happen, and the right way to do things...I couldn't possibly have any wisdom from my lifetime of experiences....right?  Grrrr!  Will has thrown up twice today, once upstairs while folding and putting away laundry, the second was from taking his meds this evening. He swallows them dry (I have no idea how he does this!). I asked him to wait, we were going out for ice cream as an end of school celebration thanks to my mom. He refused, took the pills and ran into the other room. I asked where he was going and he told me the bathroom in case they made him throw up. Again, I said "no! Just wait!"  Too late...he had taken them while standing over the toilet, lid down, he gagged and threw up all over the outside of the toilet as I was frantically yelling for him to lift the lid. This resulted in 80% over the seat, lid and back of toilet and 20% inside the toilet (which apparently he had clogged earlier while having a movement and peeing all over his pants!)

First and foremost, I wish he would listen. Then I would like him to learn to blow his darn nose!!!!  (There seriously aren't enough exclamation points to stress this point)

What is it about blowing a nose that is so difficult to learn?  It seems like second nature to me, I put a tissue to my nose and blow. How can he find this so impossible?  Does anyone have a suggestion?  I went to google to help me out...this is what I found:

 http://m.wikihow.com/Blow-Your-Nose

Read number 7, it really made me laugh!!

I had to give him cold medicine AND melatonin to get him to sleep last night because he couldn't breathe. (And prop his head up with pillows)

My heart is heavy today

We have had a very hard week here on our jaunt...it started with probably the worst melt down in Wills history. He was to the point where I asked staff to call the police while we were at the mall. 

From there it got marginally better, but still a bad week. He had another melt down the next day, had a VERY quiet weekend at home, then Monday he bolted from the bus line refusing to come home on the bus. He hid (and well enough that the teachers jumped in cars and drove through the neighborhood)in the bushes. When he got home he had another difficult time. 

Today I took him to the psychiatrist office for a med review.  It was decided to try to up his risperidone. We will see if that helps. His dad brought up a question that I had which is:  do we have staff too many days?  Is it too much for him?  I just don't know. They are there to support him and give him the skills he needs, but is it too much all at once?  He has services 6 days a week. He has section 65 three days a week. This is the behavioral services to help with the aggression and learning to use his coping skills.  Then we have section 28 specialized coming 3 days a week as well. They help with coping skills, but are more about helping Will learn the life skills  he needs to survive in the world, such as: tying shoes, blowing nose, healthy food choices, safety in the community, learning and performing chores around the house (making bed, folding and putting away clothes, unloading dishwasher, etc...)

All of these things are so important for him. He needs all of these things...but is it too much?  Do we need to back off? Is this a case of less is more?  I don't know. All I know is that Will is REALLY having a hard time and showing many unsafe behaviors, and he has been talking about suicide more often as well. 

I feel like my heart is breaking because I am his mom. It's my job to fix this.  It's my job to support him and help him find his way, but I feel like lately I've been failing him miserably. 

I know I'm doing the best I can, but what do you do when you feel like your best isn't good enough?  What do you do when you don't have the answers to the important questions that need to be answered?

The first picture is of Wills apology letter to the school staff for running off. The second is his list of reasons why he hates riding the bus.  The third is what he wrote about me last Friday when I didn't let him do what he wanted to do.  The last is of Will relaxing on Saturday. He does great when he has no demands and can choose his activities.....

Sometimes you just need to vent

I have been pretty busy lately, plus Will has been doing really well. Yes, there are always ups and downs, but overall, there have been more ups then downs. This coupled with lots of dr appointments and tests for me lately make it very easy to find excuses not to write. However, like the title says: Sometimes you have to vent!

I am really having a hard time with Wills dad. He is house/dog sitting for his girlfriend this weekend. He will be coming to Portland Saturday for something and has asked if he can take Will Saturday night to stay with him at his girlfriends house.  He says its so he doesn't have to drive back and forth so many times to let the dog out. If I didn't agree he wanted to know how far north I was willing to drive to meet him so he didn't have to drive so far. 

Really?  First I will admit, I don't want my son sleeping over at her house. I don't like her. (To be fair, I don't know her, Will likes her and says she's nice so that's all I need to know I guess...). Anyway, I told him my gut reaction was "HELL NO!" But that I realized that was a reactionary answer so I would think about it to make a more reasonable decision. I still came to the same decision. I explained that I didn't want to give up my night with Will. (I'm very protective of my Will time, and feel very guilty when I do let him sleep over at my parents so I can go out) I love the bedtime routine, I love waking to him in the morning. I don't want to give that up. I also explained that I wouldn't be driving to meet him half way (or anywhere in between).  I explained calmly that I shouldn't have to be put out and waste my gas for him and his girlfriend. Dog sitting is very nice of him, but why does it have to impact me?  He said it didn't, he could take Will Saturday night instead. Why should I have to give up my time with my son because its convenient for him, and saves him gas?  I don't agree to help friends/loved ones and expect him to be impacted negatively by it. This is his responsibility and he knew the implications when he agreed/offered. I'm not upset he asked, there is never any harm in asking. What upsets and offends me is his response. He seems to think my answer is only a personal attack against him, to which he responded with anger, bullying and threatening language. This was nothing personal towards him and solely personal in how it impacted me and my time with my son and financially when things are already tight without spending more money for an ex husband who left me under less than auspicious circumstances and his girlfriend. 

Tonight Will told me his dad has been asking Will all about my boyfriend. I will admit to A LOT of curiosity about his girlfriend. The only questions I have EVER asked Will are general questions I would ask no matter where he had gone. "Did you have fun?"  "Is she nice?"  "Do you like her?"   Having asked those questions (the second and third questions were only asked after the first time they met)

As far as I'm concerned I have no right to grill Will about his fathers girlfriend. He should NOT be put in that position. However, if others want to offer up their insights: please private message me and feel free to dish! lol

Why then does his dad feel its ok to ask Will on multiple occasions about my boyfriend(s)?  Is it because he doesn't trust me to honor the 6 month agreement we made?  Is he just too nosy he doesn't care about the position that puts his son in?  He has never even asked me if I was seeing anyone. 

Well, for those of you who have read this far, thank you for letting me vent. I don't know what retribution there will be for not making life as easy as possible for my EX husband, but from his parting words last night I know there will be in some form or another. Time will tell.....have a great night everyone. 

Friendships

I find it sad that my son doesn't have a lot of friends, but then again it keeps things kind of quiet which is nice also.

Will does have some friends. In fact he has one that has been his friend for several years, even though she has moved away and we don't keep in touch as much as we should they remain friends. He has another up to camp who he has maintained a friendship with for a number of years as well.

I was so excited yesterday when a boy his age showed up and said he would be coming over today with another boy. Yeah! Lately the children he plays with outside school are the neighbor boys who are both younger. I hope they come over more often to play/hang out with Will.

Wills dad came this morning so I could go to work. When I mentioned this new development he was not happy. He made plans to go out with his friend (she's an ex girlfriend I've always had issues with- but that's not important ;~P) and her 3 yr old son. Will has expressed many times that he doesn't want to hang out with them because they don't like the same things. While his dad did take a break from making plans (while she was unavailable anyway) he is back at it because he wants to spend time with his friend. It's frustrating when he has the opportunity to cultivate friendships for Will that are age appropriate. He had made plans to go to some other friends house for a visit, and again while the ages of the kids there are much younger (3&1/2 and 1) at least Will enjoys going to see them. The parents have been in his life since he was a baby and he feels comfortable there. So while dad goes to see his friends at least I know Will will be enjoying himself there. Even so, I would put his best interests first and cultivate the age appropriate friends since he has so few.

Anyway, that's my rant for the day....I don't want him to only play with family, adults and very small children he can boss around. I hope Will gets to see his friends today and they don't show up to an empty house so dad can see his friend. Just sayin....

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......

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)