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......

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 ;~})

What a week

So, I've been talking lately about going to camp for the week. Well, we went, and now we're home. So I thought I'd share what a wonderful week it was, and how amazingly well Will did there. Now that's not to say we didn't have some struggles, because we did. But overall it was so much more than I had ever hoped for.

Will brigs his wii, DS, laptop, and videos when we go to camp because that's how he spends his week. He stays in the camp and needs me to be there with him. He has developed a fear of all things creepy crawly. BUT, not this week! Yes, he spent a good amount of time in the camp with his electronics, but e also spent a large amount of time outside with the other kids for the first time EVER!!!

He went after the girls more than the boys, and I had to have a talk with the girls to educate them on ASD, but he was out there! They let him play! He also made another friend to play one on one with. And he's Wills age! What a week.

We went out to the ball field one night for a bonfire and s'mores. Will had 2 s'mores then wanted to leave until he saw all the kids playing on the far side of the field. He asked to play! So off he went and played for an hour with all the kids. Seriously, I can't get over this. Such a change this year.

I remember, the last few years I have not participated in anything at camp. This year I was able to go to the adult bible study for the first time ever, because Will went to his class and was able to be there AND participate without me sitting with him making sure he stayed safe. I was able to go to communion every morning, rehearsals for the musical (I had 5 solos - I haven't sung in years. Oh how I've missed it!), I went to song service (and led it 3 evenings) and I got to go to vespers at night! I did skip vespers one night because Will stated he missed me and hadn't spent enough time with me.

I had people around the Grove telling me how different Will seemed this year. So much happier, much more outgoing, and very helpful. He was a server for his junior youth group breakfast. He served me eggs and was so proud. He went to the Good Shepherd Food Bank and volunteered as well as many other acts of selflessness. He even calmly walked away when another little boy who was struggling kicked him. When an adult stepped in to talk to the other boy, Will walked away! How amazing!

We went swimming, we walked a labyrinth, we loved, we participated, and he even came to the show Friday night. I wasn't expecting him to stay for the entire thing. Sitting for 1 hour or more is extremely tough. I did give him my iPhone to take pictures with, he decided to video tape part of the show. When we walked in, he started telling EVERYONE that his mommy was in the show and she was undecided. (one of my solos has me as an undecided person who eventually decides to follow Jesus). When it was over he got up and started clapping and yelling "that's my mom! Wasn't she awesome?". Now I ask you, how amazing is that? This from the boy who tells me not to sing, and has ever since he could talk. I would start to sing a lullaby and he would say " no mumma, stop, just stop."

I am so blown away with the progress my son has made since he went to Spring Harbor. They gave us such a wonderful foundation. Will has worked so hard this year and it really shows. I feel truly blessed.

I just have to add: I knew we had made progress but when you live it day to day it's hard to see all the growth until you are thrown into a new situation. Have you had similar experiences where you are astounded by your child's growth?

Another sleepless night....

Will had a rough night last night. Then he had a great day today.

I, on the other hand, had a migraine today. I had lunch with Will then met with the psychiatric resident. She wanted some more info on family psychiatric history. I told her everything I knew, most I had shared last Thursday at the intake meeting.

I went to work, came home, figured I'd actually get some sleep tonight because of this headache. I was actually almost happy about the headache. It felt like because of it I had an excuse to let myself get a good night sleep. I was confident my brain was going to let me sleep tonight.......

Then the phone rang....

It was Spring Harbor calling to let me know he had been in locked seclusion again tonight. I have just received another call telling me he is finally asleep after 2 more lock downs.

He's talking about robots being in the room with him. This is new, I don't know what this means. The dr already told me today they were no closer to figuring him out then they were on day one.

What the hell does that mean? This sounds like one of my worst fears realized. But I have to stop, I have to put my faith in God, in this hospital, in these wonderful group of doctors, nurses, and staff. I have to believe that I'm living this for a reason and things will get better for him. They have to.

Which means: let go and let God

I can do this, right?

Spring Harbor

I dreaded telling Will about the hospital. I didn't know how or when, so I gave it up to God to decide the when and how. When the time came he was all for it as long as they helped him to not hurt all the time. He's actually been bugging me about when.

We got the call Monday that today was the day. Will could barely sleep last night he was so excited. He helped pack his bag last night. He can take only a limited amount of stuff, but he didn't mind.

I let Will sleep with me last night. (Pretty sure it was more for me than him). It took forever for him to fall asleep, then I spent the night cuddling and listening to him breathe (and snore). We played this morning then left the house. We went to Dunkin Donuts for breakfast with his dad. (thought Will might enjoy it, even though I'm having a hard time being around "dad" lately). I know Will has a tendency to eat fast, but wow! He inhaled that donut and chocolate milk! Then wiped his mouth on the bag!

I spent 4+ hours being bombarded with questioned by the team at the hospital so they can start his behavioral plan. After I went in search of my son, he was hanging in the sensory room having fun. He gave me a hug and told me he loved me and sent me on my way.

I was quite proud of myself. I was upbeat and smiling and joking before and during the meeting. Walking out the door is when I started falling apart. I am now home, and have been for 1&1/2 hrs now. I don't want to be here! I don't want to be anywhere. I want my son back with me.

I guess it's easier knowing he wants to be there, and is getting the help he needs. I can't imagine how I'd feel if he didn't want to be there. So now it's dealing with my own feelings on the matter, however, I'm not real good with that. Guess I better get better at it huh?

That's it for now, I'm going to hibernate for a while, visit Will tomorrow and breathe, just breathe........

The time is fast approaching.

I know I told you about our Christmas vacation, but did I tell you why we spent such a quiet week?

Well, I know I've told you we have been discussing having Will go to Spring Harbor after the new year. Guess what? The new year has come and gone. I have been panicking since Christmas about this day.

I went to a meeting at Spring Harbor on the 11th. Our case manager Jen and I put in the referral that day. 5 days later we were told he was accepted and put on the wait list. Well, we just got the call Friday saying that while we don't have the exact date, it will be the week of the 30th.

I can't convey the feelings going through me any more. I'm hopeful, worried, terrified, and have a hole in my heart that's so large I can't explain it. I feel like I've failed my child. I can't fix this for him!!! That's my job. I'm supposed to fix it for him.

Now, I don't need anyone to tell me it's not true. Intellectually I know this. But whether it's a "mom" thing or just the impossibly high standards I have set for myself, I still feel like a failure.

The panic is setting in as the time draws closer. What do I do when I'm all alone in my house? No one to come home to and cuddle in bed with. I know I can visit him, but they made it quite clear they don't want me to visit too much. I've never been away from Will for more than less than 48 hours. How do I make it for up to 2 months? How do I keep from falling apart when I do see him? When I drop him off?

I guess it helps that when I brought up the subject he got excited and told me he wants to go. Now I don't have to worry about how he'll react when he goes, although I'm pretty sure it won't be what he thinks it will be.

As much as I wish I could wave a magic wand and fix everything for Will, I know it's not within my ability. This is why as painful as it is I decided this is where he needs to be for now.

When your child watches a commercial for St Jude's hospital and tells you he wouldn't mind having cancer because he wants to die anyway, what else can you do but go to the extreme.

But what do I do if they can't help him either? Where will I go then to keep him safe and give him the happy childhood he so deserves. I know, I know. I'm getting ahead of myself. I need to think positively. I need to believe they can help because the alternative is too scary to contemplate.

If anyone is actually read this..... Please pray for my child. He needs everything everyone can give him. He deserves so much more than I have been able to do for him. I want him to want to live. Cause if ANYTHING were to happen to this miracle of mine I'm not sure I'd be strong enough to carry on. So please pray.

I'm trying to stay positive, but it's been hard lately and will only be getting harder for a while. The light at the end of the tunnel is that this will help and put us on track.

Still numb

So back to the meeting this morning:  When our case manager and the school social worker were talking about my son going to Spring Harbor for at least 50 days my whole body went numb and tingly.   I know they only have his best interests at heart and are concerned about him.  I really get that.  I do.
I am stuck, I don't know which way to go, and if I were to decide not to put him there for evaluation and to figure out what's going on- would I be doing that for selfish reasons?  I mean I really don't know how I'd be able to handle him not with me for so long.  I recently went to my brothers wedding, it was the longest I've ever been away from him.  I saw him Friday morning, and then again Sunday about noon.  Seriously that's the longest I've gone without seeing, kissing and/or hugging my son.  Will gives the best hugs.  And has the most beautiful personality and smile.  How can I go with not seeing that?  And how selfish am I for thinking that?
I don't trust others to watch my son, not even family completely.  IS this what it means to be a mother?  Or am I just that controlling? I still feel numb and tingly and it's over 13 hours after our appointment.  Part of it is that panicky fight or flight feeling too. Today I've come as close as I ever have to having a full blown panic attack.  It hits me when I least expect it, and all of a sudden I can't breathe or I am hyperventilating and cease to be able to function.  I need to sit down and talk with our case manager and go to Spring Harbor to meet some of the staff and have my questions answered.  Maybe then I will be able to figure out what's best for Will, without putting "my stuff" in the mix.  Dear God, please help me make the right decision for him, and please make it clearer for me.  Cause right now, I don't trust "them" to do right by my son.  Amen