A link that may interest some of you....

....a friend of mine forwarded this link to me. Many of us are aware that there are genetic links indicating who may be at an increased risk for ASD. This is more evidence that this may be true. Whether this pans out, time will tell, but I thought it may be of some interest.....

http://www.babycenter.com/204_study-finds-new-evidence-of-autisms-genetic-ties_10320162.bc?scid=momsbaby_20091013:3&pe=wB0ye

I really wish I knew what my problem was....

...I've been trying to talk to someone for a while about some of the things that have been bothering me since the summer. I've talked to other moms with autistic kids (singleton and multiples). I've talked to other friends, some of whom have kids (with or without autism), others don't. I've read a couple of books (all right, chapters of books). I've talked to our pediatrician. I've posted here. Today I talked with the social worker handling our family with our local early intervention program. But I still can't ask the right questions. The problem is I just don't know what the question is and why I'm SO upset these days....

So many things have been happening -- maybe it's just too much too fast (we were a bit overloaded this summer). But I really don't think that's it at this point -- maybe a month ago that would be the case, but I have had enough time to adjust to learning their actual diagnosis and getting everyone used to Rachel's ABA schedule. MTW (More Than Words) has actually been helping me a lot to access Rachel (and even Simon to a smaller degree). I also have done research on whether the 6-MP taken during pregnancy or the Crohn's in general may have had something to do with this, and even though there are no good answers, I'm convinced I made the best decisions that I could and would probably repeat everything in the same way if I was in the same situation. It sounds horrible to say that if that actually does explain why we're in the situation we're in, but it really was the best decision for me at the time. Then, of course, Simon's sleep issues continue which has me even more sleep deprived.

Until I can figure out what question(s) is(are) loosely rattling in my brain, I won't be able to find the answers. In the meantime, I can't sleep, I'm eating poorly and just going all around nuts. There are some things in life where the answers are clear-cut. Autism isn't one of them. What works for one child may or may not work for others. Things would be so much easier if someone could just say "Do this and your child will grow and make progress" and have it do something positive. But it just isn't so.

So, writing this didn't seem to help me too much, but perhaps if someone else is going through this it will help them and make this rambling worth while.....

Twins are 2 Separate People (venting some personal frustrations)

That is something that is hard for almost everyone to remember. Parents often know better as they see all the differences in their own children, but even then it can be easy to forget. I think it's harder when twins are identical or same gender than in my case with a boy and a girl, but it's still easy to lump them together and think of them as one. They are still 2 separate individuals that shared womb-space and were born on the same day. Sometimes I have to remind myself of that.

I have been so happy lately with the progress that Rachel's been making since the middle of the summer. She is happy. She really likes to play and do things (even though they may not always be appropriate games or be age appropriate in other ways). She laughs more. She's often smiling. She's really starting to get a firm grasp on language (even though her vocabulary is still limited and is slow to grow). She LOVES to torment her older brother by taking his toys and then running with them. Well, that last one may not be one of her more endearing trends, but at least it's NORMAL. And I LOVE to spend time with her.

Simon is, well, Simon. He wants to be left alone. He wants to get lost playing with a toy, usually in a non-productive way. He doesn't like seeing anything change. He reacts badly when he sees a stationary banner on the television screen (like the channel bug appear in the corner or the title of the program splash by). He's gotten physical (and he's a BIG kid). And he talks, but he says things he's heard before (very echolalic). I'm not sure what if anything he comprehends -- his true vocabulary is probably only about 15 words. And this has been true for MONTHS. In some ways things seem to get worse as he's getting bigger and stronger.

How can I NOT compare these 2? They are going through the same basic things at the same time. And not only are they both on the spectrum -- they share the same diagnosis (which is devastating all by itself). They are enrolled in the same program (but getting different services). I'm supposed to treat them the same, but they are TOTALLY DIFFERENT!!!!! It's frustrating and insane and I often just don't know what to do!!!!!!!

This has been really bad lately, and I think that last sentence in my paragraph about Rachel says it all. The time I spend with her is enjoyed by both of us and is rarely a struggle. With Simon, I have to fight to get into his world and to keep his attention. There are so many times where I just feel like I take the easy way out and just let him do what he wants and spend that time with Rachel. He is apparently happier. Rachel is happier because she gets my attention. And then the older one wants the attention too, and he'll take whatever is left (if he didn't take over from the beginning). However, that's not helping any of us.

Right now I just wish I knew what it was I am supposed to do.

Patience is just GONE

All right -- Kevin's coming home from his business trip tomorrow. I've been doing (what I think is) pretty well with the whole thing all week long -- but tonight -- I don't know what happened but EVERYONE decided that they were going to be on their worst possible behavior and do whatever they could to make me crazy and angry. I know, my exhaustion today didn't help (after getting to bed near 12:30, Daniel woke me up at 3am and I never really got back to sleep) and we did have a crazy day today, which made my patience even less, but still......

All right -- vent is out of the way. The week went all right -- I'm not going to win any positive parenting accolades for my skills the last 6 days, but at least everyone was fed and bathed and arrived at their appropriate destinations all week. Rachel had her ABA sessions; Simon and Daniel had their respective schools (despite being a little late picking Daniel up today, but only by 5 minutes or so) and they were relatively happy all week. But I am SO looking forward to Kevin being home by tomorrow evening and not having to do the bedtime routine alone for a while.....

I've already informed Kevin -- on Sunday, after Rachel's ABA session starts, I'm leaving for the remainder of the morning and he will have to stay with the boys. I'm still not sure what I'm going to do (but a pedicure is high on the list of probable destinations). I also will probably head over to Walmart or Target to get some containers for the kids' toys in the basement to see if that can help contain the nightly mess, but that assumes I'm willing to spend that "me" time doing something productive.

Hopefully these kids will fall asleep quickly, Kevin will call soon, and then I can get some sleep.....

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!!!!!!

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.......

"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.