Friday, October 23, 2009

We're Scheduled...

....our IEP Meetings are set for December 1; both of the twins will be seen back-to-back that morning. I'm still not sure what to expect from these meetings -- only thing I know is that major decisions will be made regarding their educations and their placements. I know that I'm being prepared for this and I've been told that despite the "idea" of this meeting sounding intimidating, it's really not so bad once you get in the room. But I'm not in the room right now. I just got the notification of when the meeting will take place. I also know that any decision that's made can be appealed if I (or Kevin) disagree with their decisions. But that's assuming that we recognize what's right and what's not.

And of course, this is coming when I'm struggling trying to determine how to get hours for Rachel with her ABA and now she's going to start in-home speech therapy (again) since More Than Words is over. Overall, the decision has been made to keep Rachel at 10hrs/wk of the ABA and we can revisit this over the next few weeks -- increasing this to 12 rather than to that terrifying 16 hrs. When I asked the social worker for her opinion as to what we should do, she told me that it really needed to come down to what would work for us -- I recognize how much she has gotten out of everything thus far and it's a good thing to want to get her as much as possible, but if I can't survive the process, is it really worth it? I had to go with the decision of the current insanity (with the new addition of speech here) would push me to a limit that I didn't even know I had. And, again, if things are going well and I think we can make the change, we can add a few hours a week and see how well she does.

As for the speech, the SLP and I coordinated that earlier today and have currently scheduled this to take place while Simon is getting his PT here. More balancing. But she tells me that the two of them can work with both Rachel and Simon perhaps in concert (one from a communication perspective and one from a physical perspective). But Rachel didn't do well before when we were doing this in the home -- will that change now or will we have to arrange doing the speech work in the school? More questions.

Additionally, yesterday was Daniel's school trip to a petting farm, and Rachel and Simon came along (because where else were they going to go?). All of Daniel's field trips in the past has been a bit problematic for us -- the twins are not up to the challenge, and neither am I. So, going into it, I was a bit concerned. As it turned out, I had to "dump" Daniel off on another Mom (he was happy to be with his friends, but still he recognized that he was being watched by this other mom rather than me) so that I could work with the twins. I did take them out of the stroller (never did that on one of Daniel's field trips before), but I did have use the "harnesses" (or "leashes" as I think of them). They did pet the rabbit, turkey and calf, but there was a lot of hysterics along the way and a lot of fighting with me, with both getting from one place to another and trying to head off in different directions. I have to admit -- when Daniel takes field trips in the spring, they should be a lot more pleasant for me -- at least I should be able to do them without these 2 coming along and Daniel will actually get to have my attention on HIS school events (which will hopefully make me feel less guilty about it all).

Every time I turn around I feel like I'm asking more questions. And not getting answers. I know -- there aren't exactly easy answers to my questions. And most of those answers have to come from me figuring out how to handle my life. But I'm still struggling to figure out what the questions are and trying to figure out how to make everything work. Let's just say I'm looking forward to October being OVER.

Monday, October 19, 2009

Would You Consider This "Separation Anxiety"?

I think I may have figured out part of my problem earlier today.....

I need to lose the illusion that I'll be able to keep Rachel and Simon together for long. I always imagined that they'd be sharing a room until they were 6 or so......that they'd be in the same preschool and kindergarten classes (maybe even 1st or 2nd grade)......yeah, I was planning on enrolling them in separate enrichment programs to help them develop separate identities. But I really wanted to foster the bond between them that not many others have seen, but I have witnessed it regularly as have several other family members. It's somewhat magical to me and something that not too many others can fully understand.

Starting this summer, I have had to separate them into different programs. Rachel is doing the 1-on-1 CSAAC ABA. Simon is still in the classroom and also receiving some in-home PT (usually while Rachel is getting her ABA session). We are now looking into the appropriate preschool programs for them. Once again, I was told that they would probably need to be in separate programs because their needs are so different, but silly me, I'm hopeful that I can find a program that would be good for BOTH of them, simultaneously. But, as I mentioned in a previous post, Rachel may do all right in MPAC, but I recognize it's not the best option for her. And Simon will be LOST if I sent him to CAPP. I still haven't gone to visit the PEP programs yet, but that's considered a less ideal option for both of them right now.

Additionally, lately I've been wondering if I need to consider separating them at night. Simon has so many sleep issues I'm concerned that it's causing Rachel to not get the sleep that she needs. I've been able to justify keeping them together up until now because I don't typically hear Rachel during the night when Simon begins his escapades. But last night Rachel took her turn at wakefulness and Simon didn't stay asleep the way Rachel typically does. If we are going to start seeing things happening in this direction, we need to consider moving one of them into the 4th bedroom (probably Simon).

So, I have to lose my illusion that they will be spending extended periods of time together. In other words, I need to stop being selfish!

Wednesday, October 14, 2009

Choosing Preschools and Thinking About the Transition

Yesterday, Kevin and I went to visit 2 of the 3 preschools offered by our local school district for when the twins turn 3 in January. We plan to visit the 3rd one next month. Both of the programs we visited were high on the "likelihood" list for placement for both Rachel and Simon.

Unfortunately going into it, we were told that one of the programs would be great for Simon and the other for Rachel. I went to the visit hoping to see that one program or the other (or both) would be a good placement for BOTH of them. When we left, I had to concur with their team at MCITP. Rachel may do well in MPAC but she will excel in CAPP. Simon will be lost at CAPP, but MPAC should be a really good fit for him. PEP is still in the mix, but the impression I get is that both of them need more services than the 1/2 day the PEP programs provide.

We also just got their 6 month reports in the mail today. It's so depressing to see where they are according to these reports -- most skills for my 33 month old daughter is at the approximately 15 month level. My 33 month old son is approximately 14 month level for all but language skills (because of his echolalia, his language skills are not very measurable).

I'm coming to realize that this transition isn't going to be easy. Well, I always knew that.....but as it's getting closer that fact is becoming clearer and clearer. In theory though, once the transition is complete, life gets easier. If you believe that, raise your hand......(yeah, I really see you doing that right about now)

All right -- I think this about covers me this week -- 3 posts in 3 days -- I think that's a record......

Tuesday, October 13, 2009

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.....

Monday, October 12, 2009

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.....

Thursday, October 8, 2009

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.

Friday, October 2, 2009

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.....