Saturday, July 25, 2009

Seeing Changes

My parents came down for a visit last weekend. It was nice to see them, but it was really interesting to watch them because they haven't seen Rachel or Simon since first learning that they were autistic. They actually left before services began. So, even though we've been watching them progress over the last 3 months, they only had our word for it. Now we've gotten to see things through their eyes.

Speech is, I think, the most important thing as far as my parents are concerned. And in many ways they're right -- without language understanding the world around us isn't really possible. When we first began this process, I believed the same thing. However, "language" and "speech" are 2 different things. For the last 3 months, whenever I speak to my parents on the phone, they always ask me "Are the twins talking yet?" as if that's the only measure of success. This has been so frustrating to me because even though I know how far they have come, I've been reporting minimal success. Now that they've seen how far they have come (with still a long way to go), I think that they are starting to understand this a bit more.

The focus of the "More Than Words" class that I'm taking is to understand how these kids communicate, and to help them develop the skills they need in order to communicate effectively, as well as, for us as parents, to learn how to understand our children better until they have better mastered verbal communication. There are several techniques that we've already discussed and are trying to practice at home, with quite a bit more to come. My parents watched me do this for the first time (when I really don't quite know what I'm doing) and I think they started to realize how much they are expressing themselves, even though they aren't using their words, per se. I'm sure from their perspective, it's interesting watching me trying to engage them and keep their interest long enough to get them to reciprocate.

But things are working. For both of them, their "stage of communication" is still quite low, but they are starting to get it. They both will make eye contact with me. Simon will ask for more food at the dinner table (by saying "pease" [hasn't figured out how to make the "l" sound yet]) consistently. Rachel and Simon are both requesting songs by name (approximations). Simon and I actually played a game with the blocks this morning -- doing some stacking and knocking down -- and we were able to play together for about 2 minutes. Rachel loves to be imitated and has been expanding her game with me to where she will play for upwards of 5 minutes if I can keep her attention.

So, despite my complaints here lately, things are going in a positive direction. Simon and Rachel have another week of school before we leave to visit family out of town for a week and shortly after getting back, CSAAC's in-home ABA is scheduled to begin for Rachel. And then when September comes around, we'll deal with the insanity of 3 different schedules. And the strange thing is, that's no longer scaring me to death -- we're already living 2 schedules -- I know we can manage 3.

So, it's been a good week.

Monday, July 20, 2009

CSAAC and Making It Work

Well, it has been an interesting few days. My parents were here for the weekend (which is a nice thing) and they got to see how much the twins have improved in the last 3 months (or so) since they've last seen them. They seemed to be quite impressed. And Kevin and I got some time to ourselves (went to see the new Harry Potter movie [HIGHLY recommend it for any Harry Potter fans out there]) -- something that we really need to do a much better job incorporating into our lives. But, that's not why we're here right now....

After my parents left (almost immediately), a representative from CSAAC arrived to inspect our house and determine what (if anything) was needed (by us or them) in order to make the in-home ABA work. I told them that they'd be working in the twins' bedroom and I had purchased a table and chair from Walmart (that I still need to assemble) for the actual trials. But, by working in there (as opposed to the basement or other common area), hopefully, there will be fewer distractions and they should be more successful in engaging Rachel, once she decides she's willing to be engaged. And, it looked like she agreed!!!! So, one thing I've planned is working as I've imagined.

I also asked her (since she's the one coordinating this whole thing) when she anticipates we'd be ready to start. She predicts before the end of the month all the pieces will be in place. So, this moved along a lot faster than we were led to believe. When we spoke to the psychologist at their facility, they predicted it would take about a month, and that estimate turned out to be true. The only problem is that we're going out of town for 10 days at the end of the month. When I informed her of this, she told me no problem and we'll probably just wait until we get back so we won't be starting and stopping. In the meantime, I still have to make another trip to their facility in Brookeville for another evaluation which will hopefully take place on Friday (of this week) and then we should have everything ready for when we return.

Another question I had was, for my own sanity, trying to get an estimate on how long Rachel's misery would last. Everyone I've talked to (their social worker, the psychologist [both for the county and CSAAC]), teachers, my own experiences, etc.) informed me that at first Rachel is going to HATE it and will scream through most of the sessions. She told me that it's very individual, but most often things get better in about 2 weeks or so. So, I'm now getting ready of 2 weeks of misery (with both Daniel and Simon in the house since we have no camps set up for August) and hoping that particular prediction is longer than reality (but not hopeful -- it will likely take longer given that it's Rachel -- she can be quite stubborn when she wants to be).

So, this is finally starting to settle in a bit. I've explained again that I can be as flexible as possible with my schedule, but because of the different activities for the 3 kids, there's a limit to how much I can give them. Hopefully, they can work things out with the schedule I sent them last week and it won't prove to drive me insane.

Finally, this week, both Rachel and Simon will be joining the Wednesday class at their current school (mainly [probably] so that I can join the parent group that meets at the same time). This has been something that the social worker has been trying to set up since May, but it was felt that Rachel would have problems in this group. However, after my breakdown in June, I think it became more of a priority to get this set up (like I said, I think this is being done FAR more for my benefit then for the kids). They have said they will make this work (had a planning meeting among themselves 2 weeks ago to come up with a "strategy"). Hopefully, all will go smoothly and there will be no long-lasting scars felt by anyone.

As we learn more, I'll continue to post the stories.....

Tuesday, July 14, 2009

I think we've begun the IEP process... we had a psychological evaluation for Rachel. I think this is the first step in the IEP process. We were originally prepared to do this in June, but then the twins' team realized that they would be 30 months in July so in order to avoid having to do this twice, it was put off until this month. So, I dropped Simon off at school and then headed home so that Rachel could meet with the psychologist.

Overall, I suppose things could have been worse. I thought it would be a good idea to do this in the basement since she hadn't had much of an opportunity yet today to get some run around playtime (had to make a playground visit short due to some poor timing issues). But she was distracted by her favorite toys (well, books), and so we moved it into the family room and were prepared to strap her into her high chair if necessary (fortunately, it wasn't until lunchtime). The psychologist brought a great number of really nice toys for Rachel to play with, but Rachel refused to do anything that she was offered by the doctor. However, if I presented her with these things, she was more receptive. Until the last 5 minutes (and the visit lasted for nearly 1.5 hours), Rachel refused to make eye contact with her, but was definitely willing to engage me. I suppose this is not as bad as it could have been -- at least she showed herself to be "engageable" (if that's really a word). I was also watching to see how Rachel responded to Simon's absence. It didn't seem to negatively affect her, but I did see her periodically looking for him, specifically when she was in her high chair for lunch she was checking to see if Simon was in his chair as well. But she didn't react negatively to his absence -- just seemed to recognize he wasn't there. She will be observed in the classroom as well.

Then we went back to their school to pick up Simon. Simon had joined the other class that meets at that time (6 kids overall [including Simon]) and he seemed to be perfectly happy being there. When I asked how the morning had gone, they told me that he had minimal issues and seemed to be happy being there and with the other kids. I really hope that continues as this should be the "norm" when he goes back to school in September and Rachel will be receiving the in-home ABA therapy.

Simon's evaluation is scheduled for next week. It'll be the same procedure, just in reverse. I'll drop Rachel off at school, someone will come and get her so that I don't have to get Simon out of the carseat and then Simon will have his evaluation without interference from his sister. Given how today's visit went, I'm really not sure what to expect from Simon next week. They are very different kids, both with issues, but their issues are very dissimilar.

Tomorrow is the field trip to a local orchard for blueberry picking. Daniel will be joining us as the trip is early in the day and his camp doesn't begin until after the field trip should be over. It's always interesting to see what "tomorrow" will bring.....

Friday, July 10, 2009

Long post from the deepest corners of the mind....

...this has been a long week. Not a bad week, exactly, just very long. Having Daniel out of the house doing his activities (camps, specifically) has been really helpful. He's been active and coming home a good kind of tired. He won't nap -- it just goes against his own desires, even though a nap would do him a world of good. But he's doing activities that are age appropriate in a safe location and I don't have the stress of having to watch him as well as his siblings. As a parent, that sounds like a horrible thing to say, but it's made him happier because he's been with his peers, something that Daniel thrives on. I only wish I could say the same about the other two.

On Tuesday, we had our pre-program visit for the Hanen course I had mentioned in an earlier post. This session included some video taping of some daily type activities as well as discussions to determine what their "stages of communication" really are. There were several checklists to go through (for each child) and then a review exactly what makes up each of the "stages of communication". Together, with the facilitator, we determined that Rachel is between the first and second stage ("Own Agenda" stage and "Requester" stage) -- Simon is closer to the first stage. This knowledge will help throughout the course, to set reasonable goals for each of them as well as for myself. After all, it isn't fair of anyone to expect them to accomplish things for children further along this path. If we did have those expectations, we'd just get them and ourselves frustrated, which accomplishes nothing. And, as always, we're hoping to see them move into the next stage before the end of the course in a few months.

It's funny -- I don't know how much of this is related to the start of this Hanen class or if I've just become more observant, but I've been watching how the two of them interact (or fail to would be more accurate) with others lately. Rachel initially appears to want to be with others, me specifically. But when put into a situation, she will run in (making sure I follow if it's what I'm supposed to do) and will just do things on her own, like in her gym class. She won't play or interact with the other children, but will sometimes be affectionate towards other parents (mothers specifically) -- and she knows and likes her teacher, but will not show her any affection. She appears to be interested in playing with her older brother, but only if the play causes Daniel to get upset (i.e. taking a toy and running with it). She seems to take pleasure from his reactions -- but I don't think she really wants to make him "upset" -- she just wants the reaction.

Simon, on the other hand, wants to be left alone. He immediately looks for toys or situations where he is by himself and seems to recognize his need to "stim" on a toy. When he is at that point, he positions himself so that his back is to anyone else and he can truly focus on the toy and his repetitive behavior, almost like he thinks that noone can see what he is doing. This is very much what I think of when I think "autism".

Additionally, the twins returned to school this week (Tuesday and Thursday [Wednesdays will start next week]). When we arrived at school, both of them were happy and excited to be back. They went right into the classroom and all seemed to be going well. However, about I'd say 20 minutes into the class, the wheels started to come off and Rachel just went into one of her determined moods. She started to scream and became incapable of doing anything that was being requested/demanded of her. Before the end of the class, a couple of additional teachers were pulled in to help. I was standing in the adjoining room watching this all happen through the 1-way mirror -- and I have no idea what set her off and saw how hard everyone was working to reel her back in. But it just wasn't going to happen. I actually had to walk away from the window after a while and found myself looking into the other classroom (I could still hear Rachel, but at least I didn't have to watch). Their teachers ended up cutting things short (they were only there for about an hour [session is technically 2 hours, but we've never gone longer than 1.5]) because they weren't able to accomplish anything and she was just getting more and more upset (Simon was also becoming agitated). This is an advantage of them being in a class by themselves, something that won't last for much longer.

Thursday's session was much better -- I won't say it was perfect, but things definitely weren't quite as hard to watch. They took the 2 of them to an inflatable pool they had set up and they had SO much fun playing in the water. I only wish bathtime would go as smoothly as the water play did! There were some issues when they were brought back into the classroom -- I'm not sure how much was just the transition vs. they just didn't want to leave the pool. But they were able to stay for the 1.5 hours they had previously worked up to, so I considered the session a success.

As you can see, Rachel is the one that's been causing everyone the most trouble. Looking at them, Simon is the one who you would immediatly presume was autistic. He flaps; he had the sudden outbursts (both gleeful and stressful); and he very intentionally isolates himself. Rachel appears to be more outgoing (at least with me), seeking my approval, but she is far more inflexible and unable to adapt to new situations. That's why we are looking into CSAAC's help by providing the intense in-home 1-on-1 ABA. But this still scares me to death.

There really is no other fallback plan if this doesn't work. So, that's probably the root of my fears right now -- what do we do if this is unsuccessful? But since I can't bring myself to fully deal with this possibility, I'm finding myself stressing out about the timing -- each session will be 2 hours and, as the case with most children, morning is the most efficient time for something like this. But we only have 1.5 hour blocks of available time once school begins in September. So, we have to look into doing this sometimes in the morning, sometimes in the afternoon. I put together a schedule of what works best for us and forwarded it to CSAAC -- we'll find out if this will work for them as well. But, if it does, that forces me to deal with my biggest worry and fear. Worrying about the timing is just much easier.

So, there is my ramblings for the week. I know it's a bit long-winded, and maybe I shouldn't have written this when I'm as tired as I feel right now, but maybe putting this down will help me sleep this weekend. Next week looks to be a good week (a bit nuts, but a good week) if things manage to go according to plan. One can hope.....

Saturday, July 4, 2009

The thimerosal debate

Well, I've been on my personal life for a while now....time for me to get back to discussing decisions that I've made and why. I've already talked about vaccines in general. Now it's time to talk about the preservative "thimerosal".

In 1999, after studies had begun to determine that the MMR vaccine was not causing autism in children, people began to look for other ways that the vaccines could be contributing to the apparent rise in autism. Following a federal mandate, it was learned that many vaccines contained a mercury-containing antiseptic known as "thimerosal". At the time, it was believed by many that this may be the link between vaccines and autism that everyone had been looking for.

Consequently, in 2002, thimerosal had been removed from all vaccines administered to young infants in the United States.

By June 2005, five epidemiological studies had been published (in peer reviewed journals) indicating that thimerosal does not cause autism, as had been believed. Additionally, in January 2008, 6 years after thimerosal had been removed from vaccines, health officials from California revealed that the number of children between 3 and 5 years of age diagnosed with autism had increased. This, in conjunction with the epidemiological studies, shows that thimerosal is NOT to blame for autism.

So, once again, vaccine theories have been shut down by both scientific and empirical results.

I will never tell another parent how they should raise their children or what decisions are "right". Immunizing your child will protect them from horrible diseases that can have terrible consequences. I know there are many parents out there who have or will choose to not vaccinate their children. Please do not make this decision because of a fear of your child developing autism. No link between vaccines and autism has been found (despite numerous attempts).

All right, enough preaching for now.....

Reference (for both this post and for my vaccine post): Offit, Paul A.; Autism's False Prophets: Bad Science, Risky Medicine, and the Search for a Cure; 2008.