This week I think Deb and I finally broke. It’s been over 5 weeks since Dayna has slept normally. Of course normally for her was going to sleep around 11:30 or 12 midnight and waking up around 5am in the morning to proclaim “no school”. That was rough, but not like what is happening now. Now she is asleep around 3am, up again around 6am. A nap again for a couple of hours mid day. Fighting to keep her awake in the evening. And repeat every day. Deb and I can actually note the 2 nights in the past 5 weeks we both slept for the night. The rest have been split between us, one of us staying up with Dayna until she finally falls asleep, the other sleeping to catch up on the lost sleep from the night before.
Sleep is not the only issue as you may know from previous posts. There’s the whole pesky “no school” issue that is still alive and well. We’re going on two and a half years of Dayna not wanting to go to school. Some days it a 5am wake up call with her telling us, some days its an all out physical brawl trying to get her to get dressed. What we have figured out is that it is not the school, another student or the bus causing it. Actually we can’t figure it out at all. This has now spanned from New Windsor Middle School, to North Carroll High School, a brief summer at Winters Mill High and now a completely new state and school, Fuquay-Varina High School. Different schools, different states, same fight. So what is different? Well for one, Dayna is now 5’1″, and over 150 lbs. When she puts up the fight, you know it. Even when we fought to get her into the car and over to the school and won, she would stay in the car and use all her strength to keep the door shut.
So that’s where we are….two worn down people and a child that refuses to go to sleep or school. And now a decision to make…..what do we do with Dayna? That led to Deb’s post on Facebook the other day that some of you may have noticed:
How exactly this will all pan out is still left to be seen. It may be a short stay, a week or two at a facility to help determine what is causing both problems, it may be something longer like a couple of months, or it may be something more permanent. Its a horrible decision, especially because in reality the biggest problem now is the effect on Deb and I, and also Kiley and Sean. If Dayna was screaming and unhappy all the time, or angry and hurting people, this would be an easier decision. She’s not like that, unless you try and get her to school, dressed or to sleep. When we moved down here, I was so worried that Dayna wouldn’t like it and we would be in a horrible situation. Now I’m wondering if she likes it too much. She has a room on the main floor right next to the family room, so she is able to enjoy being in her room and also be hanging out with us very easily. She spends more time with us in this house. She loves going out on the screened-in porch. But being home every day is no life. Staying up every night is no life. We are now going to take advantage of one of the reasons we came to the Raleigh area. More programs, more doctors and a school district that is willing to try whatever is needed. We have heard about an in-patient program to help autistic children with behavior issues, and talked to a parent who sent her child there. It’s time to try something new, time to come at the problem with everything. Its hard to imagine Dayna without the comfort of her room, her things, her technology and her family. But we need help, and they can provide it. We need a break, and they can provide it also. And more importantly, Dayna needs help and a kick start back to normal life.
So that’s where we stand. We still have a few hoops to jump through, a few hurdles to get over and a few meetings to attend. We are told however that once everything is in place, we can get the call and will need to bring her within a day. Until then we’ll keep holding it all together, occasionally laughing, frequently yawning and wondering if it will ever be back to normal.