A Day

Today has been "A Day". A VERY long day. Actually, it's been a long 2 weeks. School ended on the 16th and we have been managing to pass the time. But some days have been easier than others. I have so much to say, but I thought I would just describe this morning. There are several more posts coming soon (probably starting next week), but I miss doing this and I need to just get back into writing.

It started like any Thursday in our house.....Kevin gets up and gets ready for work around 5:30. I hear him get up and make my attempts to fall back to sleep. Unsuccessful, but I make the effort. Then, as he's coming downstairs, I hear the gate carefully being taken down and moved to the side and four little feet come running into my bedroom. Yup, it's just before 6 and Rachel and Simon are up and ready to run, jump and play. But we snuggle in bed. It's nice for about 10 minutes before we need to get moving.

ADHD.....

I turn on the television for our early morning television programs so that I can go to the bathroom and brush my teeth in peace. Only interrupted twice this morning.....slightly better than average. Take Rachel to the bathroom, get the kids dressed and we get ready to head downstairs. Rachel goes into her room to "get dressed". (yes, she's already dressed) Simon wants to go downstairs for "Trashy Town". Domino (the dog) is blocking the stairs. I convince Rachel she's already dressed and we all start heading downstairs. I grab their laundry, and lead the way so that Domino will follow me. Success!!!! They all come downstairs.

What exactly is ADHD?

I get them strapped into their booster seats and start working on getting their breakfast ready. I also need to prepare Rachel's lunch since her summer school has begun this week. I need to time television shows so that there is no risk of a program ending while I'm taking Rachel out to the bus. I plan to show them "Super Why", their current favorite program because all of the recordings are over 25 minutes long. They wanted Jack and the Beanstalk. But that's Rachel's absolute favorite episode, so I chose The Three Little Pigs. Apparently, that was the wrong choice. Simon starts to scream. Jack!!! Jack!!! Jack!!! "No, Simon," I explain. "We're doing Three Little Pigs". He screamed through more than half the episode. Rachel is getting upset because if Simon gets upset, so does she. Eventually, Simon settles down. Finally the bus comes and she leaves for school. Simon watches the rest of the program, Daniel wakes up and comes down to breakfast. Domino wants to go for a walk, but I can't go. I take the boys downstairs, Daniel goes to the Wii and Simon goes to the computer to play. I take advantage of the relative silence for 10 minutes.

And why would you want to give a hyperactive child a stimulant?

Morning progressed pretty smoothly at this point. We head out to run an errand and then go to Chick-Fil-A so the boys can play in the play area that they have at our local store. We arrive quite early (around 10:45) so they (and one other little girl) are the only children in the play area. They are having fun for about 20 minutes before Daniel decides he's hungry. So, we have an early lunch (and then we would play again). When we finish lunch, it's a lot more crowded in the play area. There are now probably about 12 kids in there (including my 2 boys). Simon is having fun climbing up and going down the slide. One of the times he climbed up there, a little girl (I would guess she was about 18 months old) was sitting at the top of the slide and not going down, but not moving out of the way either. Her father moved over to the foot of the slide and blocked my view, so I don't know what happened next. But 2 seconds later, this father was putting himself into the corkscrew slide to pull his daughter out and yelling at Simon who was (apparently) kicking her as they went down the slide. He wasn't trying to avoid hitting my son either. I immediately jumped up and was telling Simon to keep his feet quiet and told the father that he is autistic and he doesn't understand his emotion. He allowed me to squeeze in and help hold Simon back while he pulled his daughter out and then I held Simon and told him to say "I'm Sorry!" and put Simon in a Time Out (well, our version of a Time Out). After I let him go and he goes back to playing, I quietly (and calmly) explained to this father that (1) I'm sorry this happened and (2) I realize my 4 year old son looks like he's 6 (and is as strong as a 6 year old), but he has the maturity of a 2 year old. Yelling has no effect on him. I suspect he growled about me and my son after this incident to whoever would listen.

Is it appropriate to medicate a 4-year old?

So, we leave Chick-Fil-A on a less than lovely note. It's time to pick up Rachel and drop off Daniel at his camp for the afternoon. My head is spinning. I'm still recovering from the doctor's visit the previous day which confirmed our suspicion that there's more going on with Rachel than just autism. And it's only 12:00!!!!

My sanity left me a long time ago. I'm not really sure what I have left, but that's quickly disappearing. One more day and then I'll get a bit of a break -- holiday weekend followed by our full summer schedule. Hopefully, the time that I will have to myself will allow me to find some of that energy I so desperately need.

Summertime

Today, summer truly begins in my house. School is ending and all 3 kids will be home by (probably) 1:15. To me, "summertime" means no strict school schedules. It means playing more. It means going to the pool. It means time for camp rather than school. It means time for fun.

Well, with 2 kids on the spectrum, that's not QUITE the way things are going to work around here. We have summer school to consider for Rachel and Simon. Rachel will start on the 27th, Simon will start the following week. Even their camp will be about learning rather than about fun (but they will have plenty of fun as well).

But at least through the weekend, I intend to make sure they have FUN. Assuming health and weather cooperates, we're going to make it to a playground tomorrow. Rachel will have her last gymnastics class on Saturday morning which the teachers have promised to make it a favorite session. If the weather cooperates, we'll be heading to the pool on Friday, Saturday AND Sunday. Next week, Rachel is going to try a new camp for a day with her big brother. One that is NOT geared towards kids on the spectrum where she is enrolled in gymnastics (with her favorite teacher). Simon and I will be staying nearby (if it doesn't work), probably at Simon's favorite playground. But it will be interesting to see what she thinks of that.

But we have to remember to be safe. Especially at the pool. This is a link I shared on Facebook, on every page that I typically go to. Now I want to share this on my blog. 18 seconds goes by so fast. But that's all it takes to change lives forever. My heart goes out to Joannie Logan's family. Hopefully others will learn from this tragedy.



Pools are a lot of fun, for everyone. And I know this story isn't something that happens to everyone. But we all have to be aware. We all have to be careful. We all have to take precautions. We all have to be safe.

I hope everyone has a wonderful start to Summertime!!!!!!

School is Ending

Well, tomorrow will be the last day of school. My kindergartener will be entering first grade. Rachel and Simon will be ready to begin their last year of preschool before they begin kindergarten. And I am trying to make sure that everything can get done before they are home for 2 weeks before summer routines get going.

But things are never as simple as they appear. Things always seem to happen to complicate things. In this case, Rachel got sick. Not VERY sick. Just an upset stomach with rather severe diarrhea. Enough to have her sent home from school in a diaper. Enough for her to stay home for a day wearing a Pull-Up all day to make sure there were no disastrous messes. The amazing thing here was she didn't fight wearing it -- in fact, she asked for it. Once again, I see a glimpse of her self-awareness. She was perfectly happy except for the moments that she felt another wave coming.

Today was a run-around day. Because I lost yesterday with Rachel home, I have a lot to do before Simon gets dismissed at 11:30 tomorrow morning. I had some personal obligations to attend to. I also had to purchase gifts for the teachers and para-educators that work so closely with my children. And I was amazed at how quickly that bill added up -- 3 teachers (one per child) and 9 para-educators. I didn't get anything for the others working with them (speech, OT, PT, bus, etc) because there was just a limit -- at least I could cut it off there. I am grateful to all of them (well, not the bus -- can't wait for that to end in another school year), but I've got to cut it off somewhere. It all adds up.

But all the gifts have now been delivered. All meetings are over. Camps are arranged. Medications collected from the schools. All personal obligations met. Now I just need to go to the local Sam's Club to stock up. Hopefully, I can get there in the morning. Otherwise, I'll have to head over there on Saturday afternoon, a far less preferable option because it becomes a family outing. If I can't make it to Sam's one more grocery store trip without the kids in tow. Then starting around noon tomorrow, Simon will be home, 12:30 Daniel will be coming home and about 1:00, Rachel will arrive. Then all 3 will be home until June 29 when Rachel begins ESY (Extended School Year), and July 5 when Simon begins his ESY program, and all 3 kids begin their camps.

I'm ready for being frazzled. I'm ready for the insanity. I'm hoping to keep some level of routine. I'm hoping that it won't be too hot so that I can handle taking them to local playgrounds. I know we'll be heading to the pool nearly every afternoon (Daniel has swim team and Rachel & Simon both love to play in the water). One part of routine down. Just about 10 more to go.....

Autism and Empathy

We've been noticing something recently. Rachel really loves her brothers, Simon in particular. She has always been sensitive to his feelings and they have always demonstrated what I call a "twin bond" -- they only have to glance at each other and they seem to have a full detailed conversation. We have never been able to scold Simon in front of her, not because of the noise, but because it meant her brother was in trouble. I had thought that part of that was the unexpected nature of this (Simon getting scolded is outside of her control), but for the last few weeks, we're starting to see that may not be the case, at least not in full.

A new favorite television show is "Super Why". We watch it on PBS Kids' Sprout as well as on our local public television station. She seems to be obsessed with the episode focusing on "Jack and the Beanstalk" because the "problem" they are trying to solve is resolving the main character's little sister's temper tantrum. "Joy" is crying. Screaming. She's having a "HUMONGOUS tantrum". Rachel has been walking around asking, "What's the matter, Joy?" or suggesting offering a bottle to Joy to make her feel better. I've also been receiving notes from her teacher explaining that she has been more emotional in school lately when another student is upset. She also gets upset. She tries to cry, and is often successful.

I know this may seem strange to say, but I don't think of this as a negative development. I think this is evidence that she is trying to determine how to express "Empathy". Dictionary.com defines empathy as "the intellectual identification with or vicarious experiencing of the feelings, thoughts, or attitudes of another." I was always concerned that because of her autism diagnosis whether she would ever fully be able to express or experience empathy. But she is proving me wrong lately.

I created and administer a Facebook page (We Care About Someone With Autism). Yesterday, I chose to have a day long topic discussion about autism and empathy. The theory that an individual with autism cannot experience empathy was one of the first myths that I was exposed to when we first began our journey into the autism world. We are obviously seeing that is not the case, at least in Rachel. I was wondering what others had to say on the subject. I was pleasantly surprised to see and learn that others often see the same behaviors. The biggest difference is that these children often need to learn how to express it effectively, as this skill is one that is often lacking. I have been addressing this issue by telling Rachel to ask the "sad" person, "Why are you so sad?" I've only been doing this for a few days so it's too soon to see if this will help to resolve the problem that we are currently experiencing. But I wouldn't really call it a problem -- I'd just call it a development.

But Rachel will always feel something special for her twin brother!

Blogiversary #2

Yesterday marked the 2 year anniversary of when I started this blog. I started it because I was having difficulty coping, in every possible way. I asked for advice but it wasn't enough. I read some books, but it wasn't enough. I looked online. And I became afraid. So, I decided to add my voice to the fray. I didn't know who, if anyone, was ever going to see it. But I would tell my story. I would relate my experiences. I would try to educate others.

It didn't take long for life to interfere with these lofty goals. I felt overwhelmed. Too much was happening too fast. And I was in denial making it very difficult to make decisions. What we were doing wasn't helping Rachel. And we still needed answers. And I couldn't do anything. So, one day, I sat down at the computer and let it all go. I just typed. I vented about my worries. I basically cried into my keyboard. And after I pushed the "Publish Post" button, something happened. The weight of the world was lifted.

It didn't last. I suspect by the next day it was back. But what I was doing in cyberspace changed. I needed to learn to cope. And this blog was going to teach me how. I used it, not to inform or educate like I had planned, but to let it all go. I started writing "pity posts". I still documented what we were doing. I still told our story. But blogging really became a cathartic experience. It really was a place to put all the negativity and frustrations.

This was true for a long time. It's still that, but it's made a change over the last few months. A friend of mine nominated this blog for recognition in one of the contests (specifically on babble.com). And I started looking for opportunities to write guest posts on other blogs. And I couldn't have a pity party on someone else's blog. It was a chance to educate others. It was a chance to explain what my life is like as an Autism Mom. It was a chance to talk about raising twins on the spectrum. It was a chance to reach out to others so they could really start to "Get it" -- something that many Autism Moms feel is lacking in the general population.

That desire is now what's driving this blog. I want people to "Get It"! I want others to understand what Autism families live with every day. I want other Autism families to realize they are not alone. I want to make it clear that every case of autism is unique, even when it affects twins.

So, now I'm back to educating. I'm also venting. This blog continues to grow as I do. I'm still interested in becoming a parent advocate, but I still haven't figured out what that really means. So, for now, this is my version of advocacy. I AM a parent advocate. Just not in the way that I envisioned.

Who knows where I'll be and where this blog will be on June 6, 2012? Keep reading and we'll find out together!!!!!