My life with Autism is Different Now...

I have been spending a lot of time lately (between work-insanity, spending precious moments with my son, well, actually that's about it. No time for anything else) reading the blogs and posts of others who have ADS children. First let me say, my computer
Is down and might never get back up again so everything is being done by my smart phone---God bless smart phones. So I can't set up links to anyone, that and I'm technologically hopeless. But I do want to give shout outs to Autism Daddy, Bacon and Juice Boxes and Autism Mumma. There are more but I have to move on for now.

First let me say that each and every one of you bloggers out there who have children with autism are amazing and insightful people. I truly enjoy reading what you have to say. It helps me look at my situation in a different light, with new insights and understanding. And sometimes you just make me laugh when I need it most. So thank you for being you and sharing your journey with me.

Now on to the post. I realized while reading everyone that I have not posted a lot about my life with autism, at least not lately. My posts have been taken up with everything else going on in my life, none of which are MORE important than my son.

My life with autism is different now than it was 6 months ago, partly due to Spring Harbor, which was a blessing in our lives, but partly due to time. My son is very high functioning, he is delayed in motor skills- fine and gross, he has more sensory issues than you can shake a stick at (always wondered what that meant) and has a lot of aggressive tendencies. Meaning when the going gets tough for Will, the stuffing gets beat out of me, or his teachers. Now SH has helped with the aggressiveness, although its not gone. In fact I've seen an increase since school got out.

What does this mean in my life? Well, like a lot of you, it means a lot of planning. It means that I turn down invitations for things, or invite people over to my messy house instead for a more easily controlled environment. (I find that most people either decline to come or never even respond which can be disheartening, but that's the way the cookie crumbles)

It's all about the schedule, the routine, and the prep at my house. I'm sure most parents can agree those are key factors. I also try to find a balance with pushing Will out of his comfort zone (gently and slowly of course) to help him grow in what he will tolerate, and even enjoy. His dad recently took him to FunTown (local amusement park). I was so proud to hear he went on several rides including the Log Flume- granted that was only ONCE! But he did it and realized it could be fun in a terrifying kind of way.

I am lucky in that my son is able to be pushed sometimes, unlike a lot of ASD kids. The trick is to learn when and how far. When I make a mistake the ramifications can last for hours, days and even on one occasion weeks.

When things are good, my son is the sweetest boy I know. He hugs and kisses me, tells me he loves me and tells me I'm one of the best people he knows. We're having many more good days than bad since SH and for that I am grateful. As I write he is playing with his toys on his own (has always needed an adult to play with in the past, I know quite the twist on the typical ASD kid right?) waiting patiently for me to make him lunch.

So the child I have today is different from last year, and I can't wait to see who he will become in the future.....

Back to autism

It's been a little while since I posted about my son and our life with autism, and the progress since Spring Harbor.

Overall I still am thrilled with the change I see in him. There are whole days that go by and I think.... Wow, us this the same child?

Then there are moments like the one I just experienced. It was time for a shower so I prompted Will off the computer to start the showering process. He first ignored me, then was frustrated telling me to stop trying to frustrate him and that he'd do it later, then he threw a full on melt down. Threw both sneakers AT me, and a pad of paper, then he even came after me and started hitting me with his fists.

I have to say I was very proud of myself in that I stayed present, calm, and followed the plan. This means: everything stops till he can re-group and begin his task of taking a shower. I also reminded him to remember his "safe hands and feet", "brain and body in the activity" and "kind and appropriate words".

Of course being in full blown melt down these meant nothing to him. So he proceeded to tell me how he felt like a baby who was being bullied, he was abused, and tortured. (little melodramatic?). I asked him how he could feel like a baby who was bullied when HE was the one doing the bullying? I mean I was sitting on the couch at that point, looking at a painting above the tv and not talking, while he was hitting me and screaming in my face. He did not want to hear this. Was I too harsh? Was I too blunt? I don't know, but he does NOT ever accept and/or see his responsibility in these situations. It is ALWAYS someone else's fault. I don't want him growing up like that. It's a recurring theme and it's an exhausting tightrope walk trying to teach him this concept. I can only pray one day it will come.

Anyway, whether I was too harsh or not, he had his emotional release, sobbing on the floor and even said he was sorry, "I just get too mad sometimes, I get too frustrated"

What a huge step!! Course this was after I told him I looked sad because he was sad AND because he hurt me. (he asked if I looked sad because he was sad) but at least he got it.....sort of.

There are days my heart swells with joy and pride for my beautiful wonderful son, and then I have moments like earlier when I am so emotionally drained from constantly dealing with "The Plan" and behaviors. But when I feel this way it is usually quickly followed by the the amazement of how far he has come. 6 months ago this would have been so much worse, and with his growing strength it was becoming quite a concern.

I've said it before, and I'll say it again. SH was amazing and it was a jumping off point, not a cure. There is still a lot of work to do. So I'll breathe, and keep running the plan.

Strip search

I know I've already talked about not breaking the law and why (strip search).

I am in the middle of an investigation at work. Someone stole some money for one of my clients. (Pisses me off that someone would do this to a person with DD, let alone any one). I was the last person on record to see the money so I am under investigation as is at least one other staff. I have worked for this company for almost 13 years so it pisses me off to think they might really suspect me. However I do understand the need for the investigation.

I went in and spent almost 2 hours being interviewed and writing my statement. Then I get a call asking me to come in for another interview. When I said yes, I was told it was at the OOB police station----WHAT? Ok, kind of freaked out, went in on Monday, wrote out a statement at the police station, was asked what should happen to the person who stole (if caught). I responded they should be fired and have to make restitution. I was then asked "Is that ALL that should happen in your opinion?". I got a little confused and said I didn't know what else would be appropriate.

During the course of the interview I was told that my car was seen at the house at noon on the day in question. I almost crapped my pants right there! Even while telling the police and my manager where I was at noon-- at SH visiting my son (had to sign in so they have a record of me being there whew!) all I could think about was getting strip searched. The interview was concluded and I left. I freaked out all the way home. I know I didn't take the money. (I don't steal, especially from people who have so little and who can't protect themselves from things like this.) this did not stop my mind from spinning out of control for about an hour. I watch too many court, lawyer, cop shows. All I could imagine was how on most of my favorite shows they always start by arresting a couple innocent people. OMGoodness!!!! That's me! They are going to arrest me! I'm going to go to jail until they catch the right person! (like stealing less than $100 will land me in jail as if it was murder). It isn't the thought of sitting in a jail cell for a few hours or days that upsets me so much, might be a nice break from my crazy life. Again, it all comes down to the strip search. I can't handle the thought of a strip search.

Can you tell I'm scared of having to go through one? I still don't think they'd be happy to perform one on me. They might ask for a raise after. However, once I reeled my imagination in I realized that I AM innocent, so I really don't have to worry about the search, or jail, or being fired. Again, whew!

I REALLY REALLY would NEVER do anything that would result in a strip search. The police cant handle this much woman!

Life is a funny thing

The last few years have had a lot of hard moments. There's been a lot on my plate. Well, this year seems to be all about change.

Change had always scared the hell out of me. I mean, the unknown can be a scary thing. There has been a lot of fear in my life lately. It was all about the unknown. My husband left me, what will happen to me now? Will I be alone the rest of my life? I really believed that one. My son has been in crisis for a long time. (almost 2 years), what would happen to him? Was I going to be able to help him? Would I fail him and therefor doom him to struggle more than he had to for the rest of his life? Was I going to loose the house? Where would I live then? How can I make it on my own?

These are the thoughts that have taken up so much of my life the last 2 years. They even had me stuck, unable to move forward, because there IS some comfort in staying where you are. At least then you know what's going on, you know what thoughts and feelings to expect. To move forward means to let go and trust that it WILL be okay. Trust that by moving into the unknown and uncomfortable we will come out the other side alive and whole. (at least okay).

It so easy to hold on to the fear, resentment, anger and loneliness. At least you know where you are. I have spent a lot of time telling others and more importantly, MYSELF I had let go of these feelings and had moved on. But you know the saying: Talk is cheap? Well, it is. Just saying it isn't enough. You need to live it and be it. You need to LET GO, you need
To TRUST that you will make it, you will SURVIVE. You may stumble and fall, but you get right back up, dust yourself off and keep going.

I finally decided to LIVE IT. I made
The decision to put my son in SH for the help I was unable to give, and look how well that worked out? I was devastated. I couldn't even sleep in my own bed the whole 6 weeks. I cried, and missed Will desperately, but I made it through, and so did Will. Looking back it was one of the best decision I've made. We came out the other side and we're stronger for it.

On a more recent note, I filed for divorce. It's been 2 years, Jason left me, under pretty crappy circumstances. I had refused to do anything about it. I decided that he left ME, he could file. Well, look how well that worked out for me. :)

Jason waited 10 months to get the papers. He waited till he had a girlfriend. He then left the papers for me to fill out for him ( to serve me, a little messed up? What do you think). When his girlfriend broke up with him the papers disappeared. My anger and feelings of hurt and resentment (already pretty strong) continued to grow. I kept telling myself "HE left ME. He can file. He can finish one thing in our marriage.". I kept telling myself that I would come to despise and hate him if I was forced to file. When Will went into SH, Jason told me he was filling out the paperwork again. (turns out he had a girlfriend, big surprise). I waited well over a month, but I was still not served.

I finally made the decision to get a lawyer with the financial help of my parents. I served HIM! I tell you what: I don't hate him, my anger, hurt, and resentment feel like they have melted away. I feel more in control of my life, more FREE.

I still don't know what the future will hold, but I know I'll be okay. I know Will will be okay. Where ever we end up, we will be OKAY. In fact, I'll go even farther--- we'll be better than okay! We'll be HAPPY!

Jason is angry with me for filing first. Is it because I took away his control? Is he scared? I don't know, and that's okay. I don't NEED to know. Thats HIS to deal with, NOT me.

Does this mean I've become this perfectly enlightened person? No, I'm sure I'll still have set backs, I'll still get angry, hurt and resentful as well as other negative feelings besides. However, I truly believe that I will be able to acknowledge these feeling and release them much, MUCH sooner.

Just remember, saying you've let go and moved on rarely means you have. You have to let yourself fall into the unknown trusting you will survive. You also have to take ACTION! You have to do something to move past these fears etc. if you can do this you can SOAR with the eagles.

Come fly with me!

So far so good

Well, it's been over 24 hours and the only real struggle was when dad made Will go back to SH. (dad "needed" his iPod so desperately, even though he has 2 others). I was able to run his plan and help Will manage himself and his feelings. He was awesome.

Today the only blip was when he changed his mind about a shower. I made it clear that he needed to shower and wash his hair well (the night before he showered and only washed the back of his hair? What's up with that?). He wasn't happy, but didn't take it past telling me he wasn't happy. How awesome is that?

It was a great day at school, and then he had a friend come over. He's had 2 friends write/draw him cards in the last 2 days saying how glad they are to have him back and that he's their best friend.

We had dinner out with granny and papa. He has had such an awesome day that after the shower he earned a guitar (inflatable) and he rocked out for me. I feel truly blessed.

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.

Tomorrow is the day!

I'm so excited and a little nervous. Tomorrow Will comes home. I can't wait. We are going out to lunch when we leave and then he is going to school.

Speaking of school. I called the special education director for South Portland schools and felt completely blown off by her. I was promised by the school that they would do everything in their power to support us and Will. They were told they needed to shadow at Spring Harbor for the last 2 weeks before discharge. Did they do this? No. His teacher came in today for 2 hours today!! The LAST day he will be there for school. I feel like they completely dropped the ball. So, today I wrote an e-mail to the superintendent of South Portland schools. I have not heard back yet. I'm a little disappointed to have heard nothing, but I guess I have to learn to be patient.

I think part of my problem is that I'm getting antsy about tomorrow. I WANT his home NOW!!! Like right now! As in this very minute. Get the picture? How am I going to sleep tonight? Which also means that tomorrow night I'll be back in my own bed! Yeah!

What do I mean you ask? Well, the first 2 nights Will was in SH I tried to sleep in my own bed. It wasn't working for me. I couldn't stop listening for Will, and missing him THAT much more. (if that's even possible) So, I have been sleeping on an inflatable mattress in my massage room for 6 weeks. Don't feel bad for me, it's actually quite comfortable. When I do sleep, I've gotten pretty good sleep down stairs. I have to admit though, I'm looking forward to sleeping in my own bed, AND knowing that Will is in the next room.

Tomorrow my life will change forever, but I'm excited for it. This will mean my child is home with me and I'm working hard to ensure he has a better/easier life. (well, as much as I can control, which lets face it, isn't much. ;))

I also have learned in the last week or so that I NEED to make time for myself so I can be a better parent. (thanks PH) what can I say. I had 6 weeks and it wasn't until week 5 I did anything for myself? Guess I'm a really slow learner. At least I can learn. Right?

Getting closer!

We had a meeting on Friday. We now have a discharge date! He is coming home Thursday the 15th. The discharge meeting is at 10:30. So we will hopefully be walking out of there about 11am!!!

We had 2 more TTV's. Friday after the meeting Will, his dad and I went to the Mall and walked around for a while then Will and I went home for a short visit before heading back to SH. Then yesterday Will and I spent the whole afternoon together. We had a few struggles but I kept to the behavior plan and each time he struggled he was able to turn it around quickly.

This just goes to show that the hard work is just beginning, but it is so worth it.

I get my baby back in 4 days. Count 'em- 4!!!

Spring Harbor

Well, as hard as it is not having Will with me, I have to admit that he has been transformed while at SH. He now tells me he likes himself, he thinks he's smart, funny, and creative. Wow!

Now, this doesn't mean that things are magically fixed and we will have a "typical child" when he comes home next week. Because the hard work is still ahead, it's just wonderful to start from such a positive place and know he can feel so good about himself.

He has become such a happy, smiling , confident child in the last couple of weeks it is truly astounding. There is also a quiet confidence in him about his gender identity. He was asked what his life would look like in 20 years and he said that he will have had a sex change operation and will be a good parent. Willow it is.......

I guess this means I get the boy and girl that I always wanted in one amazing child. Will is definitely one of a kind, and I wouldn't have it any other way. I am truly blessed. Thank you God.

TTV

What is a TTV? Well, I cant remember what it actually stands for, but it means: home visit!!!!!

I drove to SH and arrived at 10:45am. I was supposed to stay for lunch and then we would leave. Well, Will had other plans. He said he wanted to go out to lunch, he was sick of pizza as much as he enjoys it. It was decided. We left at 11 and went to Elevation Burger. Great place! He did a great job. Then we went to my parents house for a visit. Again, went well. He was so excited to find out they had a new printer and giving us theirs. It's a printer/copier/scanner. This kid is in seventh heaven!

Then he wanted to go HOME! So we went home. We set up the printer, he printed out a couple pictures to bring back to SH. We played some wii, he jumped on his trampoline, played with some toys, looked at some new Pokemon cards and even snuggled for about a minute on the couch together. (he's growing up, I think that may be one of the last snuggles I get :(. Ah well, independence is a good thing right? Insert long drawn out sigh here---). Will told me it was time to go back. When I asked if he wanted to he said no. I have to give this kid credit! He knew what he needed, even if he didn't want it. Such a smart kid!

We returned to SH, he asked me to stay, I said yes. We went to group where a couple of kiddos were having a very challenging time. Will was amazing! Then he once again got me to dance in front of the staff and kiddos. (can we say humiliating?). I told him I was going to leave when dinner time rolled around. He seemed upset by this and asked me to stay for supper. He gave me the puppy dog eyes-how could I say no? I stayed for supper. When it was over Will "became" a 1 week old kitten. He said it was because he was so happy to be with me. When I hugged and kissed him goodbye he became upset and teary. This was the first time in his whole life he's shown any separation anxiety. It broke my heart, although it warmed my heart that he enjoyed spending all day with me and didn't want it to end.

I got a call that night saying he had a hard time, needed a restraint and an open door seclusion. I guess it's not too surprising as it was such a different day for him. It's his first day out in over a month, as well as the longest visit we've had together. He fell asleep quickly though. Guess I wore him out. :) they actually had to wake him up to take his meds. How I love this little boy, can't wait to have him home with me and to start on this long journey to a better life for him.

Will

So, it's been a while. Things have been overwhelming lately. (more so than before)
On top of Will being in SH I was without heat at my home for 4 days and my car died at the same time. My parents bought me a car. I'm very grateful to them for helping me out, but it makes me feel like a loser. I'm 38 years old and should be able to take care of myself.

What started out as the worst week of my life became I e of the most wonderful. So many people have been sending Will cards in show of support and encouragement. I learned that Brian Waters (from the Patriots) wife is sending Will cards and wants to send him a care package when he comes home. At Trader Joes the cashier said she wanted to talk to her manager about sending him a care package as well from Trader Joes. Wow! How wonderful that strangers are willing to support my wonderful son!!

The garage I brought my van to even waived their $40 fee for looking at it. I feel truly blessed to have these people in my life.

The best part is that after having lunch with Will this morning I talked to the social worker about our next meeting. At our last they had no plans for a discharge. We scheduled the meeting but was also told that they believe Will has turned a corner and they are now thinking about discharge in 2 weeks.

I'm so happy about this turn of events, but terrified at the same time. This means a lot if hard work and vigilance on my part. I'm not afraid of hard work, I'm afraid of screwing up and mostly of Jason not doing the work. I don't want to make any mistakes. I know I'm human and will make mistakes, I just hope they aren't big ones and Will continues to move forward and doesn't backslide. Especially because of something I did. I want him to continue on his path towards self control, self soothing, higher self esteem, lessened anxiety and lessened depression. Please let me support him on this path.

A very long week

This week started off feeling completely hopeless. I ran out of oil Sunday, the same day my van decided to say goodbye. Now Sundays are the only days of the week I work all day and can't see Will. Every other day I can at least see him for 20 minutes while he eats lunch. Monday I was called telling me I could not come for lunch due to Will struggling. (I found out later that day that he lost my visit as punishment NOT supposed to happen!!!!!!!) I went Tuesday for lunch. I was very anxious to see him not only because of the previous day, but also because he is my only Valentine.

Again they refused to let me see him. This time because he was in the middle of a crisis. I did see his hand from behind a mat (he was trying to hit staff) I left his valentine cards
And gifts at the nurses station and cried as I left, feeling more alone than I thought possible.

However, not all was lost, I changed my way of thinking, and on Tuesday I was able to have oil delivered. (didn't have heat till Thursday as I was at work when they delivered oil so no one was there to let the guy in to bleed the line and start furnace.)

My parents let me borrow their car, and I'm still borrowing it. My father also took me out Friday to look at cars and bought me one on the spot. I can't say how appreciative and grateful I am to my parents for their help and support, but I also kind of feel like a loser for being 38 and unable to buy my own car. Oh well, I'm a work in progress and trying to not beat myself up too much for needing help. Especially since there is so much going on in my life right now.

I was also able to visit Will weds, thurs and Friday!! He has been in very good spirits all three days. Even with his med and dietary changes. I look forward to seeing him again today and enjoy music group with him. It seems to be the only place where Will can/will tolerate my singing. Then I will go pick up my mom (she's without a car since I'm borrowing hers till I pick up my new car at the beginning of the week) and we will go back to SH to visit with Will.

Then we will go visit my grandfather who is not doing well at all. He's getting more confused and depressed by the day. He is very clear (and has been all his life) that this is not how he wants to live. Although I love him dearly and want him with me for as long as possible our whole family has started to pray that he does not see his next birthday (march 2). He is an amazing man and I love him with all my heart.

As for other blessings this week: I went to pick up the van and they waived the $40 fee for looking at it. Also, I got 2 iced coffees yesterday for the price of one. May not sound like a lot, but I was grateful and that second coffee came in mighty handy. ;~). Also, at Trader Joes when explaining why I was buying so many cards (cashier asked first) she took down Wills name and said she was going to ask if TJ's could put together a package for him and send it. WOW! How amazing!!!!!!

And to top it all off, my mother connected with the wife of a Patriots football player a while back. She is sending Will cards, and has asked for a list of his favorite things so she can get a care package together for him. How blessed am I to have so many people care about my son. My faith has certainly been renewed this last week. To go from depression, fear, and such a sense of being overwhelmed to having hope, faith, acceptance, help, and love. I have a deep sense of gratitude to everyone who has and is supporting Will and myself. To everyone who has offered any and all help: thank you so very much. I feel so blessed to have you in my life. I love and appreciate you so very much.

Here are a few pictures from Will's valentine present.

His favorite reason was that he's cute. ;~)

Morning call

SH called this morning. I don't know what the reason is, but had a hard morning today. Restraints and locked seclusion this am. They can't figure out the antecedents so..... Still no idea as to what is going on.

The one thing I find frustrating is I have mentioned at least 3 times in the last three days that Will has expressed a desire to try a body sock to help when agitated. Every time I say something about it they are surprised and say they will try offering it to him.

But will they remember next time he's explosive? Only time will tell. Now to wait and see if he has a good bedtime tonight. Here's hoping..........

Another call

I have received one more call from SH. Will is having another rough night. Will it ever get better? Will he ever start going to sleep there easily, without being locked up and being restrained multiple times a night? This is breaking my heart

What is going on for this little boy? What's going on in his head? Will we ever know?

Moving on....... I got to spend the better part of the day (after lunch through supper) with Will. Because I can shadow now, I can be with him when he is participating in his groups. We had music group--- being someone who loves music, I had a blast singing everything from Puff the Magic Dragon to the Beatles and Stones. Another great part of it was that the man who ran it is a wonderful man I know from my work. How small is the world, I've worked with his son, and now he's working with mine.

He participated in a group where they talked about bad habits, which ones they have, how they affect others and themselves, as well as ways to change these bad habits. Will didn't want to be in this group, he started acting out. I think most of it was because I was there. He would whine and talk about being frustrated, then he would stop and turn to see if I was paying attention and what I would do about it.

I think he was very disappointed when I acted in accord with his behavior protocol like his staff.

It's 10:30pm, bedtime was 8pm and he is still in locked seclusion. I love my baby, and I want him to come home. But first he needs to get better.

Please get better soon........

Will is a challenge

After another bad night, I had lunch with Will, had a 2 o'clock meeting at Spring Harbor and a nice visit after.

I now get to "shadow" when I'm there. This means that I can wear a special badge and follow Will and his staff around and go all over the hospital with them observing his treatment plan being implemented.

I've been home for a few hours and have just received yet another call from SH. Will has been in 4 restraints in 3 hours. He is talking about robots being in the room with him, he's afraid of ten, he's worried about tomorrow and he would calm only to escalate a few minutes later.

The nurse reiterated to me that they can't figure him out. He is a challenge, a puzzle and a complicated little boy.

I feel panicky when I get these calls. Even though he is now asleep, I am wound up tighter than a spring and don't think I'll be sleeping any time soon for yet another night in a row.

I want him to feel better, but instead he's staying the same or is more dis regulated than before. I realize it has only been a week, but where is his miracle? I know, I know, it's SH. That's his miracle. I just want another one: him happy, less anxious, less aggressive, and home with me asleep in his own bed. And I want it NOW!!!

Really, is that too much to ask? Oh, and some sleep for me, a new car, and oil to heat my house. That's not asking a lot, right?

One more thing.........I want a hug.

Weird kind of day

Not the worst day, and not the best.

Had a big fight with Jason (the hopefully-soon-to-be-ex) lets just say there are many things we will NEVER agree on. Including his choices and behaviors of entitlement surrounding my house etc.

Work has helped keep my mind occupied, but in the quiet moments, I'm right back where I've been most of my time since all this started.

This panicky feeling won't go away, even when I'm busy. Will I ever be okay with him not with me? Will I ever be ok with having to let others take care of him? And I also want to know if I'll ever be okay with him being so happy without me?

Crazy I know, I should be happy that he's happy to be there. It should make me feel better right? I mean part of me does, but there's a part that hurts because he was so willing, so happy to be somewhere else without me. There was no thoughts of missing me, of wanting me over strangers. I know it's silly, but I wonder if others ever feel this way, or if I'm so very different from other parents......

Either way, I'm finding ever aspect of this harder than I realized it would be-- and I was expecting it to be hard.

I spent some time with a friend Friday and was able to enjoy myself for a couple of hours, and even though some of that time was not all about Will, some was, and driving home I felt horrible for having any fun.

I know that's silly, that I need to take this time (at least some of it) for myself and the self care I continually ignore, and I hope to get there, but I'm so not there right now.

I am sitting at work watching tv and wishing I was at SH with Will, or better yet, cuddling with him at home on the couch or playing on the wii and trying to beat him. (he finds that particularly amusing as he really is so much better than I am)

I want him with me, and I want to be able to breathe, just breathe easier.

Good night

I just called SH and was told that Will settled right down tonight and went to sleep easily. I guess third times a charm......

He had had a rough time in the morning, but was doing well by the time my mom and I got there and the rest of his day went great!

It does make me feel better that his bedtime was better, but I still feel panicky and can't sleep ( although I'm exhausted and REALLY need to sleep) this will get easier right? Because its bee three days and it's not easier yet.

I go back to work tomorrow, I'm hoping that spending the day with my clients, throwing a birthday/super bowl party for one and then watching the super bowl (ok, the commercials) will help. I mean it can't hurt right? Now if I could just get a good night sleep, remember to take my depression mess
In the morning {forgot them the last three days} and remember to eat regularly throughout the day and drink my water ( or any ) I'll be doing better.

And people say this is the time I should be focusing on taking care of me...........silly people.

Ellen

Well, I know this is silly, and nothing will come out of it. (should really think positive----must work on that) I wrote to Ellen Degeneris today.

I wrote about Wills struggles (not in a lot of detail) and about SH. Telling her and the show about the amazing hospital with multi disciplines. I asked that she possibly help spread the word about how important these hospitals are. There are only 11 hospitals like this in the country and they are all in the north east. Then I told her because of Wills issues and severe depression I would like an emotional therapy dog. I don't think Will needs would be enough for a psychiatric service dog. Either way I've been told by my case manager it is too expensive for us to get one.

I could have told her I need an etd as well, and a new car, but I thought that might be pushing it.

I will be more than thrilled just to have her help raise awareness about this type of children's psychiatric hospital and the need for more in the country. But one can hope right?

Another difficult night

So, last night I stayed on the couch till 1am. Went to bed and laid there playing on my phone till 2:30, at this time I fell into a restless sleep. Tossing and turning till 6:45-ish am. Then I refused to get out of bed till 9:30, when I had to drag my butt out of bed to make some coffee for my seriously sleep deprived brain to function. Drank a large cup, then left to have lunch with Will at SH. While there he told me he still liked being there, had a rough night and it was because he hadn't known what to expect at bedtime but he was all good now.

I called SH just a little while ago. He had a great day for the school part but then struggled of and on. Including bedtime. Where he refused to settle again, went to quiet room, started getting aggressive with staff. Had to leave quiet room as someone else needed it so he went in the sensory room and fell asleep there.

So it was still a rough day/night but it was better than night #1. So, even though I know he wants to be there, and things were better at bedtime, why do I find myself exhausted at 12:10am unable to shut my mind off and sleep? I have had way too many nights like this leading up to SH. Weds and last night were the worst. Hopefully it will get better for me too?

Mom and I are going to visit tomorrow morning. I know she's anxious to see him and his environment too.

But what to do the rest of the day? A good friend has invited me out tomorrow night, but I really am not up to a group of strangers, or anyone right now.

I did go to a friends house today for a few hours so that's good right?

Here's hoping for sleep tonight. For me and Will.

Couch

My couch is my new best friend.  We have spent the last 2 days together.  I have slept, cried, zoned out watching tv, and eaten (things I shouldn't have) on my couch.  I don't want to move, I want to quit work and hide on my couch forever.  However, I realize that this is not an option for me.  I am off the couch at the moment (the only way I could blog about my beloved couch) getting ready to pick up my beautiful child from school in just under an hour.  Then we will have the rest of the day and all day tomorrow together.  I know he will want to do many things during this time, play games, we've already discussed going to the library and children's museum tomorrow, and maybe seeing Granny and Papa today.  We also have to go grocery shopping today too, as I was too busy being one with my couch all morning.  But all I really want to do is lay on the couch and snuggle/hug/kiss/ and be with my son.  I want to just be with him, but I know that, not only will he not want to do that because it's boring, but we  would both be missing out on all the great things we can be doing together.  He hasn't gone to SH yet, it hopefully won't be until the first of the year (if at all, a girl can hope can't she?) So why do I feel as if I'm losing him already?
Snap out of it already!  He's here, let's build memories that will hopefully get us both through the tough times ahead.  These are the words I'm trying to live by now, in this moment......

I also need to try to stop shutting my friends out.  I find that when in this depressive state I shut down, as I'm sure a lot pf people do when feeling this way.  I don't want to always complain when talking to friends, so I stop talking, I get very quiet when on the phone.  I need to find a way to be able to open my life up to people again without making it all about me and my problems.  I'm trying.....I'm a work in progress.......