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.
