Merry Christmas!

Less than 24 hours until Christmas!  I can't believe it's December 24.  This year has been intense, to say the least!!!

• Jonathan & I worked through separation and brought our family back together in the beginning of the year
• I had some health issues and had surgery in September
• I was hospitalized for an emotional breakdown
• Both Jonathan & I are adjusting and learning how to function with both of us working full-time

And Riley began first grade and his behavior has gone downhill fast.  There's been happy times - and I'm very thankful for those.  But I'm being very transparent when I say this year has sucked and while I've said it during hard times before -- I don't know if I can take any more.  I don't know how we have made it through all we have in the last 12 years.  Our therapist often tells us "you've dealt with and are dealing with quite a bit more than the average family deals with in their lifetime".  Yes.  Is there a prize with that?? 

Riley was hospitalized at The Meadows in Centre Hall for 9 days total.  He was discharged on Monday the 22nd.  That afternoon I re-registered him for the partial program where he will continue to attend 8-2 Monday through Friday for an indefinite period of time. 

When we picked him up, it was simply a nurse coming to the lobby with a few papers to sign and a "bye, Riley".  That's it.  We got in the car and drove home.  It felt odd -- like there certainly should have been more to it than that?!  But there isn't.  That's the sad thing. 

On the way home I asked Riley kindly if we could please take care of his hair.  Normally I shave it short at home, but for about the last 6 months it's been a battle, with him screaming and pulling away from me.  So I tried to make a deal.  Could you either let mommy do it or I will take you to a salon if you prefer.  He wanted the salon.  So while I hated to pay $23 for a haircut I can do myself (that's with giving her a generous tip because it's Christmas and well, keep reading), I have to pick my battles and go with it.  So we did a few errands just he & I before his intake appointment at 2:30 for the partial program.  We had an hour to kill when we had everything done ... except the haircut.  He insisted he wanted to do it after the appointment.  I know that this would not have made a difference and he was simply putting it off.  So I held his hand and we reluctantly walked into Great Clips. 

Once in the salon he sat in the waiting chair and curled in a ball and locked his fists around the arms of the chair.  I checked him in, and the lovely girl named Brittany with purple hair was so sweet trying to talk him into letting her cut his hair.  He hung his head and clung to the chair saying no no no.  He tried to say he wanted me to do it at home now.  Knowing the way things go, I knew that was just a ploy to get out of it at that very moment and that home would be no less painful.  So I managed to stay calm (though I wanted to cry that this was happening already) and get him back to the chair.  Once there, he slumped down low and pouted.  She put the cape on him and he began crying very loudly no no no!!!  So we tried to discuss with him about which razor she would use so that it wouldn't hurt at all and to make him and I both happy.  Once he indicated what he wanted her to use, we thought we were ok.  As soon as that razor touched his head he was screaming and trying to get out of the chair.  I had to stand in front of him, legs locked between mine, holding his wrists down while she tried desperately to be quick about it.  Mid way through he began screaming he needed to use the bathroom.  My mind had to quickly determine if he truly did or if it was a ploy to get out of it.  I decided if he truly did have to go that bad and wet himself I wasn't going to be angry or upset, but dang it - he was finishing his haircut FIRST.  So we managed to get it all done - both of us covered in hair - and he went to the restroom, got his lollipops, and we paid and thanked the kind girl profusely for her patience and left.  Once out the door he immediately was jolly and making jokes about now his head is cold and silly mommy you should have brought a hat for me!  I chuckled, and yet in my mind was thinking how can he go to such extreme behaviors so quickly?!?

Once home I told him we could play a game of Othello together while the girls did their homework with daddy.  He liked that idea.  We had a bit of a scuffle that he had to put away a few things before playing, but he did ok.  He was a little hyper, but seemed to be handling himself pretty well.  Until....

Jon & I had our weekly counseling appointment at 7:00 and the kiddos needed to go with Nonnie to finish some shopping.  Riley simply didn't want to go.  He wanted to stay home.  So he stomped and argued and fought.  He sat on the steps and began to punch himself.  He just didn't want to go and wanted us to stay home so he didn't have to go.  Eventually we were able to leave and she managed him ok, thankfully. 

Once we got home, however, it was a battle for him to go to bed.  He was yelling at us, stomping his feet.  I'm hungry.  I don't want to sleep.  I'm not tired.  Going in his sister's room.  Making a bunch of noise.  Coming down to our room.  I just burst into tears.  In front of him.  I cried and sobbed and said "Riley, why??  Why are you so sad and angry when you're home with mommy & daddy??  What is wrong??"  He just snapped "I don't know".  Jonathan said I'll handle him - you go to sleep.  Apparently he got him calmed down for a while but he was up twice in the night. 

I just don't get it.  We've gotten nowhere.  Seriously -- nowhere.  I don't know what his stay at the hospital has done for him.  I don't know what the partial program is doing for him.  It's home.  Something is wrong at home.  Something triggers his mind at home.  You'd think we were horrid abusive neglectful parents the way he acts out. 

Oh, did I mention there are family/home based services, but we can't get those because he doesn't have medical assistance.  Isn't that nice?  I have a job, with good benefits, but they don't cover those services that are desperately needed.  I've applied for it, as we've been told he can get it with a mental health diagnosis even though we don't meet income requirements.  We'll see if that comes to fruition -- in however many weeks or months that may take to get processed and then home services set up.  In the meantime??  We're on our own.

I'm stumped.  We're stumped.  I guess we just live with things the way they are, cry when we need to, and love him the best way we know how....and pray that we have a breakthrough at some point.  What else can we do?? 

We love you Riley -- with all our might. 

Update

So Saturday evening (the 13th) Riley was admitted inpatient to a facility in State College.  He handled it well, no crying or clinging....which we found a little odd, but were thankful. 

He had a bit of an issue with his first roommate -- that child lashed out at him.  Thankfully there were no injuries and he seems unaffected by the incident.  He had a second roommate, and was unable to follow rules with that roommate and now has a third....

He calls us every evening around dinner time and we talk for about 10 minutes.  He doesn't get emotional at all -- just tells us about his different therapy groups and all the yummy food he gets to eat (he's a bottomless pit, even on the ADHD meds!).  He sounds so ... different ... on the phone.  I can't describe it.  Hollow maybe?  It's just strange and unemotional. 

He had a medication added at bedtime to help him with impulsiveness & sleep.

We had a family phone session with Jon & I, the therapist, and Riley on Tuesday morning.  I don't really know where it got us -- but I'm trying to trust that things are progressing. 

He has been doing well in the program, which actually kind of worried us.  Home is SO extreme that if he can't get help somewhere by them seeing the issues and helping us with treatment, then I don't know what we'll do.  This morning when I spoke with his therapist she said that he's having trouble "respecting boundaries" with the other male residents.  So perhaps he's starting to show some of the behaviors and this well help them better develop a treatment plan.

I asked his therapist this morning if they had an idea of discharge date.  Not because I'm rushing to get him home, because I want him to stay there as LONG as it takes for him to get well -- or to a higher level of safe function.  More because I just didn't know what page they are on with that....and we all know insurance pushes to get people out the door.  She said that he has a tentative discharge date of 12/24, but with the recent behaviors it may be changed.  That will be assessed early next week. 

It's been difficult at home.  We miss him.  It feels so strange.  I find myself looking at his pictures and watching old videos and tearing up.  There's an odd silence in the house.  Yes, I'd be lying if I didn't say it's a breath of relief, but it's still emotionally so devastating. 

I technically have more time to be getting cleaning and things done, and I just don't have the energy.  I'm not sleeping well (even with medications) and I'll admit -- my depression has hit a pretty low point again and I'm struggling.  I managed to drag myself to work today, and we had our holiday celebration, which involved a lot of much needed laughs with my co-workers!

Please continue to pray for the situation, in all its many aspects......

The Hardest Thing....

We've come to the end of our rope.

Jon & I cried a lot and tried to decide what's best for Riley. This morning after Jon took the girls to a friend's we brought Riley to crisis and asked for help.

He's been accepted to a facility in State College. I'm devastated that it's so far away, but we are holding on to the hope that he will get the help he needs.

Please continue to pray for all of us.

What Have We Become?

I haven't posted in a long time. Life got the best of me. Writing my thoughts down seemed more painful than helpful. But I'm at a point again where I thinking putting it out there for others to understand what we're going through may be helpful. This post may be all over the place....excuse my clouded brain.

Riley.

Just typing that one word makes me take a huge breath, brings tears to my eyes, and my heart is heavy. Riley Beckett. Our blonde haired, blue-eyed, super smart, funny, 7-year old boy. THAT'S Riley. But lately we haven't been able to see through all the muck to enjoy that boy that is lost inside his little body. It's painful....and is leading to some painful decisions on the part of mommy & daddy. Decisions I never thought I'd be faced with making.

Riley has ADHD (Attention Deficit Hyperactivity Disorder) and ODD (Oppositional Defiance Disorder). For a long time we let people tell us "Oh, he's just being a boy" or "Oh he's strong-willed" or things along those lines. I knew when he was quite young that it was more than that, but could never quite explain it. With the start of 1st grade this year -- it started coming out more and more -- and outside the home. He finally was diagnosed in October by his pediatrician.

We started him on a low dose of Methylphenidate, which in one month's time was at its maximum dose with little improvement. His outbursts became worse to the point of suspension from school. Suspension. F.I.R.S.T. G.R.A.D.E. One Thursday afternoon I ended up sitting in the emergency room crying my heart out to a stranger, telling her my son is out of control and we need help. The plan was to have him admitted to a psychiatric hospital, as he was unpredictable, violent, hurting others, at risk of hurting himself, and it would be the quickest way for a psychiatric evaluation. But when they began making phone calls and there were no beds locally and they were going to start calling places over 2 hours away, I didn't feel that was in the best interest of Riley to be so far away. We were told about a partial day program that he could attend. So I thought we could handle it and I brought him home.

He's been in the partial day program for almost 2 weeks now. He does well and gets good behavior points each day. He's seen a psychiatrist and his medication was changed to see if it worked better for Riley. It hasn't been. As I said, he does well in the program, but home is a nightmare. Going to a store is a nightmare. Going ANYWHERE is a nightmare. So the doctor indicated Wednesday of this week that we should start an afternoon dose to help with evening. Yesterday (Thursday) was the first day we administered that dose. NEVER again. Riley was up a total of 21 hours straight from yesterday morning through mid morning this morning. From the time he got home at 3:30 and for the next 12 hours until his little body gave up -- NIGHTMARE.

I don't know many people -- no ANYONE -- who have a child with ODD. I don't know how to describe it other than every. single. thing. is a battle. I mean everything. But it's unpredictable. You never know what will trigger him. It could be something that just happened or something that happened yesterday. It could be how you put his food on his plate. It could be how you look at him. It could be how you make his bed. It could be telling him it's bedtime. Literally everything. It's a struggle to know as a parent when to give in and let him have his way and sticking your ground so he knows he's not in charge. But even then you can't win. "Mommy I want to sleep on the floor". Sure. No problem. {Make bed on floor} "No - I want to sleep in my bed". Okay, but I'm going to make your bed and that's it. We're not changing it again. We cannot go back and forth. "Ok". {Make bed again} Ok, crawl in. "NO! I want to sleep on the floor!!!" When I refuse to give in to his defiance, ensue the next 7 hours of a battle. I spent the first hour with him wrapped in his sheet, arms at his sides, hugging him in his bed. He cried. He screamed. He kicked. He tried to bite. I just held him until my heart couldn't do it another second and I had to leave the room. I went to my room and sobbed. {this has been happening nightly for a while} Then, surprisingly it was quiet for a few moments. Then we heard him in his sister's room chatting and keeping her awake. Then he turned his radio up loud. Daddy went upstairs to put him back in his bed -- and honestly I'm not sure what all transpired after that because my sleeping medication kicked in and I was in a fog and then out. The last I looked at my clock it was after 11:15 and we started bedtime at 8:00. Daddy told me this morning it went on until 3:30 a.m. till he crashed. He had to be watched, because we just don't know what he will do. He's impulsive. Unpredictable. So he & daddy only got about 3 hours of sleep last night -- and I can't imagine how their day is going....I got about 6 hours of sleep and I'm dragging.

Worse than that -- I'm dreading going home from work. I'm tired. I haven't even described a tiny bit of what has transpired. But know this -- our life revolves around just functioning, and keeping Riley & the girls safe. Most times Daddy & I take turns. Go until we can't go any more. Somehow we manage to put food on the table -- some nights it burns because daddy is juggling Riley and dinner and I'm driving the hour home from work. Sometimes daddy has to work late at night after everyone is asleep because it's the only time he can get out. Sometimes grocery shopping gets pushed aside until it absolutely HAS to be done, and even then we're zombies at the store and forget half of what we went for (even with a list). Everything is a choice of who goes where with which child/children.

We both cried last night. Our hearts hurt because we just don't know how to help Riley, and it's becoming less and less functional at home, and not a good environment for his sisters. So what do you do? He's my son. He's my responsibility. I love him. But perhaps I can't give him what he needs. And THAT is like ripping my heart out.

I don't want to send him away, but I don't want to wait until something "irreversible" happens and regret it for the rest of my life.

Daddy & I don't know how to function. We're barely hanging on from minute to minute.... Our marriage is struggling. Our girls are struggling to feel like they have a place - like they're important and loved -- because they see that everything hinges on Riley's behavior. They're smart girls, and we've talked to them about it, but it's still not fair to them.

We're a hurting family, and our poor little boy needs help that we don't know how to give him. We're trying. We will give up everything for him to get the help he needs....if we can just figure out what that is. In the meantime -- please know why we look a bit frazzled and have blank, very tired faces.

We're hanging on by a thread....a very thin and fraying thread.