Saturday, September 26, 2009

Sleep and Planning for the Week Ahead

Well, this has been an interesting week, shall we say....

I've been talking about the twin's sleep issues a fair amount lately.....well, the saga continues.....

Starting on Sunday night, Simon has begun sleeping through the night again. Every morning I would wake up and be fearful of what I may have slept through the previous night. I wasn't too worried because experience has told me that if there was something terrible, I wouldn't have slept through it. However, the 1-1.5 hours to fall asleep had returned.

Kevin will be traveling on business next week -- he's actually leaving tomorrow afternoon and will be gone the whole week. So, I've been panicking about how I was going to survive the week, especially with the minimal sleep that I've been getting lately. I asked other parents in the parent group I attend weekly if they've any experience with these behaviors and made an appointment to talk with our pediatrician. I received a lot of sympathy from the parents and once again "melatonin" was mentioned. So, Wednesday afternoon, I went to speak with our pediatrician (made an appointment to see her WITHOUT the kids).

I really want to emphasize how much I really like our pediatrician. I may have a problem or 2 with the practice, but she's great and very easy to talk to. I spent about 20-30 minutes discussing what things have been like lately and what I've tried, what I'm considering trying, and she was able to brainstorm with me a bit. Autism is not her area of expertise, and she freely admits it. But she is familiar with others who have the experience and had spoken to one of her colleagues on my behalf before this appointment (based on messages I'd left for her). At the end of the appointment, she was going to get back with me to give me the correct dose of melatonin, but warning me that it may or may not be the "magic bullet" that I'm desperately searching for. Well, she's definitely right about seeking that perfect solution and I have to admit I was slightly disappointed that she didn't feel that it would solve our problems. But, decided to try it anyway.

So, last night, we gave Simon a small dose of melatonin (250mcg). It took him about 45 minutes to fall asleep after putting him to bed. After 5 nights of sleeping through the night, I thought "Wow -- this may actually be the solution we've needed all this time". Well, at 4:30am, I hear that all-to-familiar-sound -- a loud one-person conversation -- Simon telling stories and playing some game in his room -- but this time I'm hearing him walking around the room rather than staying in bed. By the time Kevin went into his room about 5:45, Simon had woken up Rachel and Daniel (Kevin woke up when this started and I was already awake [don't ask]) and it feels like we're back to square one. But that was only the first night of using the melatonin.

So, we are trying again tonight. Writing this right now, it sounds like Simon is asleep (at least I haven't heard him in about 10 minutes) -- so it took him about 50 minutes to fall asleep after saying "Good Night". We'll see if we have more success tonight.

Let's hope that this solution will be what we've been looking for and that tonight will give us all a a good night. Being on my own next week is something that terrifies me since I won't have Kevin to fall back on when the stress starts to build. But if you read this blog regularly, you may expect to see a couple of aggravated, frustrated, or exhausted posts during the next week as I may be looking for an outlet...

Oh, for anyone for whom this counts, L'Shanah Tovah and Good Yom Tov!!!!!!

Friday, September 18, 2009

Back to KKI

Well, after a sleepless week, Simon and I got into the car this morning and drove up to Baltimore for our next visit to Kennedy Krieger Institute. This time, the visit was an occupational therapy (OT) evaluation. Rachel's visit is scheduled for early October. Kevin stayed home from work today so that Daniel and Rachel could each have their "school" and not have to make the trip with us so that everyone was able to be where they needed (except for Kevin, who probably should've gone with us, but I insisted otherwise). In other words, I became a bit of a dictator.

Let me start by saying that sleeplessness really interferes with everything in life. For a few weeks now, we've been dealing with sleeping issues in the middle of the night -- usually by Simon, but Rachel has her nights too -- and I'm getting pretty close to the breaking point. They are both suffering from colds or allergies or something. Now, before falling asleep last night, I heard that horrible cough that every parent who has experienced this DREADS -- the seal-like bark of croupe. Well, not quite, but definitely something that sounded like we were going to have an incident during the night. When she woke up coughing at 2:45am, I was ready -- planned a steam bath and a visit to the freezer (a combination that worked for Daniel in the past). Fortunately, she fell back to sleep (on her own) at about 3:15 and her cough never developed into that "croupe-like" nightmarish quality. But I stayed awake until at least 4:20, when I looked at the clock and I remember thinking "Oh, great -- another sleepless night -- Simon will be up in about 10 minutes and we need to drive up to Baltimore". The next thing I know, I am hearing Simon, groan and then look at the clock expecting to see it read 4:35 or something similar -- it said 6:38!!!!!!!!! We needed to be on the road at 7:30 so it sent us into a bit of panic mode, but we got out....

The visit really didn't tell us much we didn't already know. We already knew that Simon has significant gross and fine motor issues, poor motor planning, etc. It is their recommendation that he receive additional OT in addition to what he is currently receiving in the classroom (1.5 hrs/wk) and that it continue beyond his 3rd birthday. That last thing is important and will be mentioned in her report -- with the IEP meeting coming up in a couple of months, any services that are ongoing will need to be justified if it's going to continue.

So, that's the week, in a nutshell.......

Saturday, September 12, 2009

"Yes Yes Yes"

We had an amazing experience today. Well, I should say Rachel did something amazing today.....

Today was the day of the CSAAC picnic. We had a session this morning so we arrived late, but the kids were all happy when they saw what was there -- there was a plastic pool and a moon bounce. Daniel went straight for the moon bounce and we didn't have to worry about him much the rest of the time we were there. Rachel squealed with excitement when she saw the pool. Simon followed his sister (but didn't have the same level of excitement).

You have to understand, it was only about 60 degrees outside, which is a little cold for 2 year olds to be playing in this small pool. We went to the picnic with the kids dressed in jeans and t-shirts. By the time I got to the pool, Rachel was already SITTING in the water and Simon was pulling at me to let him in the water. Before long, he had joined Rachel. After about 15 minutes, I decided enough was enough and pulled them (kicking and screaming) out of the pool and got them out of their wet jeans and let them run around the picnic in their t-shirts and diapers (because I was stupid and didn't bring a change of clothes) and made it clear that they weren't to go into the pool again (and if you think that worked, you haven't been reading my blog). We brought them over to the moon bounce and forced them to go in and play, thinking that they would get absorbed in there and would forget about the pool. For Simon, success. Rachel, well, just read on.....

Rachel noticed there was a "ladder" in the moon bounce which needed to be explored. She struggled many times to climb it and was finally successful. She noticed it was attached to a slide, which made her very happy. But then she saw the pool again and went running full speed. Fortunately, her dad saw this and went after her. I'm not sure if she actually managed to get into the pool (again [note that in between this incident and initially leaving the pool she had snuck into that pool at least 3 times]) but he looked her in the eye and told her "No Pool!!!!!". She, of course, threw a tantrum. But this wasn't an ordinary tantrum. She was actually shouting "YES YES YES!!!!!". So, even though her behavior was unacceptable, it was appropriate and she was expressing herself EFFECTIVELY!!!!!

GO COMMUNICATION!!!!!!!!!!!!!!!!

Unfortunately, I didn't get to observe this as I was keeping an eye on Simon. But we are definitely seeing some real progress in Rachel when it comes to her ability to communicate and socialize and this is just the latest example. This is UNBELIEVABLE news to me!!!!! This is just a follow-up to the amazing month of August (as far as Rachel is concerned). The changes in her since August 1 is just simply amazing!!!!!!

The only sad part is that her brother isn't currently making the same progress. But we know that these changes happen in spurts and right now it's just Rachel's turn.

Sunday, September 6, 2009

Don't Autistic Kids Need Sleep?

Well, it's been about 11 nights where Simon, Rachel (or both) have decided that they don't need sleep. Well, that's not quite accurate -- there have been 2 nights where they have both slept, and one of those I managed to sleep.

The frustrating part is not only are they awake, but they're LOUD and fully awake. Simon (who is the culprit more often then Rachel) is sitting in his bed, telling stories (including finishing them with a heartfelt "The End"), counting, reciting the alphabet, singing songs......all of the cute things that he does, but at 4:30 in the morning, it just loses its charm. Miraculously, neither of them are waking Daniel.

Most of the time, I THINK that Simon is the one starting it all -- at least he's typically the one I hear first. But there have been times where I could've sworn that Simon was the only one up, and then went into their room to "fetch" him and seen that he was totally OUT and Rachel was the one up and playing in her bed.

I'm trying not to run in there every time I hear one of them up. They share a room (by my choice -- really want to encourage the growth of their "twin bond") and in the past, I have always been afraid of one waking the other. After going through the "Ferbering" process this spring, I realized that they are both more than capable of sleeping through each other's screams. Between that knowledge, learning (through painful experience) that when I appear in the doorway to be sure they are staying in their beds tends to awaken them more, and just being too (bleeping) exhausted, I've just been leaving them in their own room and to their own devices, hoping that they will fall back to sleep. Over the 9 nights of wakefulness, that has happened ONCE.

So, I'm going through my days ready to climb into bed at any time, and embracing caffeine in any form that I can get it. Not good for me, I know, but at least I'm surviving it.....

Wednesday, September 2, 2009

Time Marches On

Well, it's been just over a week since our visit to KKI. Since then, I've had a little bit of time to collect myself. We've been doing a lot of things around here, but that's activities -- not receiving buckets of information (directly). I think I really just needed this time to just digest everything that had happened in the previous 2 weeks.

We still have far more questions than answers. But life continues on. This week, Simon has gone back to school. He was dropped off on Tuesday and, despite crying while being led into the classroom, went in and did well for the day. And since his school is so close by, we actually walked back home. Getting used to taking him at 8:30 rather than 11 is going to take some getting used to, but we know we'll manage it.

Rachel's ABA sessions are also continuing on. She is starting to show a little bit of resistance, and I think much of it is towards a particular tech. She definitely seems to have her favorites among the techs working with her and she isn't afraid to show me that. But she has become a "snuggle bunny" and really seems to like cuddling with me. This is a change that doesn't bother me in the slightest. She also is more interested in playing (but having opportunities to be destructive will take precedence).

Daniel will be starting his school next week. After that happens, we should be fully in the throws of our schedule for the next few months. 3 different schedules for 3 different kids. This is what I've been worried about in the past, but now that it's here, I realize it's not going to be so bad. Crazy, yes. Exhausting, most definitely. But doable. Everyone (well, almost) has been really accommodating and helpful trying to make sure that everything that needs to happen can happen.

So, next major event -- getting blood tests to see if there is a genetic link here.....stay tuned.....(note that will likely take 6-8 weeks before we get any results -- just the action of getting the blood work done is our focus right about now)