Yes, I know its been a while since my last post. I had big news coming at the end of my last post, and I was going to use the blog to announce it. Well, life moved on and the big news happened, but the time to sit down and write never came about. There have been some big challenges lately that made me want to start writing again, but now I have two problems. The exciting news is now riddled with some pains, that’s problem number one. And now I have a head full of all kinds of things I wanted to write about, some of which are unrelated to the others, so that’s problem number two. So in the spirit of the Presidential debate I just witnessed on TV, I’ll just spew all my thoughts out there at once. That’s one way to catch up!
The new and exciting news is not really new and exciting news anymore if you have Facebook, or LinkedIn, or a computer. We made the move to North Carolina. It was not an easy decision, and it was not quite the way we wanted to do it, but we made it happen, we are happy and will clean up behind us. The move was the right one by far, we love the new home and neighborhood. I love my new job and short commute. We have family near by. There are great schools here and it’s a great town. To finally get it to where we are took a couple of poor job choices earlier this year, then some unemployment, lawyers, bill collectors, and everything else you don’t want to deal with. But it was all worth it and we realized we had made the right choice the first day we all woke up here.
However, as life with a child with autism dictates there are always challenges. In our case, its actually still the same old challenges we were and still are dealing with….hence Groundhog Day in the title of this post. Remember Groundhog Day? Every day he wakes up and it’s Groundhog day again, over and over. For us a new home, new town, new schools and a new life still resulted in the same challenges with Dayna. So starts the spewing of thoughts……
The first thought is sleep….ah wonderful sleep. It sucks. I mean around here it does. Dayna continues to struggle with sleep, and as a result so do we. The new house is set up differently. Dayna has a bedroom on the first floor with her own bathroom. Great for us in that we can keep an eye on her during most of the ‘awake’ hours when we are all downstairs (and as an added bonus, no more jumping up and down with the ceiling shaking above us!). But, that also means at night she can come out and have the run of the house, namely the kitchen. I now sleep with a monitor on, just like back in the old days with babies. Luckily for us, Dayna’s kitchen routine is not one of calmness, so I hear her banging around pretty well. Sometimes she bypasses the kitchen and just comes upstairs to wake us anyway. Either way, a full night’s sleep is a very rare, very treasured thing. When you are starting a new life, not having normal sleep really takes its toll. It’s hard to be moving, unpacking, learning a new town and starting a new job on 3 or 4 hours sleep every night. Yawn……
And then comes the next morning and getting Dayna ready for school. Actually a better description is getting ready for “NO SCHOOL!!!”. Yep! That’s still happening! We know its not the school as this is now the third school its happening with. And right now it is currently it is at it’s worst. Dayna is back to full on yelling, screaming, kicking and swinging. It’s getting bad, there is no other way to describe it. She is fighting hard, and winning. It’s hard to describe. I made a recording of it for her current teacher so she knew what was going on, and with having the ‘cloud’ for storage, I realized I had recordings going back for over 2 years. All of Dayna screaming and crying in the morning. I went back to 2014 and clicked on one and was amazed at how similar it all was. I then looked at the date, 9/19/14. The next day after I made that recording I suffered a heart attack……there’s big surprise (he said rolling his eyes). I’m not saying it was a direct cause, but consistent lack of sleep and day to day stress definitely don’t help when you already have a heart condition. The fighting is real, the fighting is hard, the fighting is stressful. There isn’t a way to have a good day, or a healthy one, when you start it with a screaming, crying child who is literally kicking and swinging at you. I can’t lie, I lose my mind. And when I think about it, I realize a lot of the frustration does not come solely from Dayna’s behavior, it also comes from wondering what everyone else will think. What will the school say for her not showing up, what will people say for us ‘giving in’, what will the school and people say we should be doing that we are not? I get so wrapped up in my head about what I am going to hear that I just want Dayna to go to school so we won’t be judged. It’s exhausting, and constantly wondering what others think leads me to the next thing on my mind that I wanted to talk about, and its one of those thoughts that has nothing to do with the move.
I actually don’t know what to call this stream of thought. It’s about therapy, protocols, and advice. It’s one of them and all of them at once, and then some. Basically, it’s the thousands upon thousands of ideas, therapies, and ways you are supposed to teach a child with autism. Every day it seems like someone tells us about something new. It goes a lot like this:
- Person A was trained in ABA and thinks it’s the best way for Dayna,
- Person B was trained in TEEACH and tells you how that can help,
- Person C feels Floortime is the best,
- Person D knows someone who’s friend has an autistic child that has the answer,
- Person E just met you but wonders if your child even has autism,
- Person F has little knowledge of autism therapies but offers you advice on what to do,
- Person G read an article about a new diet and tells you what you should be buying,
- Person H said to find that ‘one special talent’ like Rain Man had and focus on that…..they then wondered why they just got smacked in the back of the head.
Point is, there are many ways that children with autism can be taught and worked with. Some are proven, some are theories and some are downright unproven and dangerous. But there are two big problems I am starting to notice. One, a common thought you will hear all parents of autistic children say is this – “If you meet one child with autism, you’ve met one child with autism”. The meaning is that each child had their own unique needs. It’s called a spectrum for a reason, and it is a very large spectrum. So it’s hard to imagine that any one program or therapy will be a fit for everyone. Problem number two, a lot of the therapy and training is all based on children. Dayna is now 16 and grown. On one end mentally she can seem young, watching The Wiggles and playing with toys meant for toddlers. On the other end she is bigger than her mother and a determined teenager. I find that many therapies either are geared for younger children or if they are geared for a teen with autism, they often assume a higher level on the spectrum. For example, an idea of coping with sleep may be ‘lay them down in bed and dim the lights to promote sleep’, obliviously geared towards a young child but not realistic for Dayna. Or it may say ‘do not allow talking on the phone before bed and have them turn off the TV’ geared towards an autistic teen that has higher skills. Dayna is both and big enough to get up, turn on her lights, turn on the TV, etc. If we took those out of the room, she would just walk out of her room to the main room and do the same thing (we know this by experience). I struggle to find realistic ideas on how to deal with a teen/young adult with autism.
And when it comes to the advice we hear from all over, I find that advice given is generally given from true concern and a want to help, but often does not consider all of the factors. After all, everything is easier if you don’t consider all the factors. I can say that painting a bedroom is an easy job, just do it. But painting a bedroom loaded with bulky, heavy furniture is harder. Add cathedral ceilings, its turns into a bigger job again. Throw in some elaborate trim, lots of windows and a 300-pound mirror that has to be removed and the easy job just became a lengthy project. The same thing happens with Dayna and getting her up and out to school for example. We get a lot of advice on what to do since it has been such a problem over the past couple of years. And getting Dayna dressed and out for school should seemingly be easier, or so we have been told. But consider the fact that its 6:15am and dark out when we are waking her, it starts to get harder. Add the fact that she most likely was up during the night leaving her and everyone else tired and stressed….it’s harder again. Throw in two more children to care for, two more jobs to get to, two more schools to get to, dogs, lunches, and a house you are trying to keep up and suddenly spending 40 minutes early in the morning getting kicked and yelled at is no longer a simple job. And that’s why my advice is to only give advice when asked. Parents with autistic children will go out and seek help and advice when needed. And when they don’t, well it may just be because they already know what won’t work. While to some it may seem like parents of autistic children are ignoring or turning a blind eye to their child’s behavior , it actually may just be they have a distinct comprehension of reality and the need to tolerate and cope with their child’s behavior so they can move on with life. I started this section wondering what to call it, and I still don’t have a answer!
There are so many more things I wanted to write about tonight, but I will have to move those to the next time I write and hopefully I can post more often than I have. Sorry if this one rambled about, I try to stick to a theme but this one was more like a stream of thought. Better to get something out rather than nothing at all!
And where does this all leave us? At the moment, on the couch at 1:50am with Dayna, who is still wide awake. I’m sitting here after taking a day off work and spending all day making sure she did not nap so this wouldn’t happen, but it happened anyway and I am wondering what to do next.
Got any advice?