Sunday, December 27, 2009

The Year In Review

Well, it's currently the last week of December, 2009 and, it's time for me to think about the last year and plan for the next one. 2009 has definitely been a bit of a roller coaster -- in many ways a year not to be forgotten. It's when we were first introduced to autism. It was also when we took our twins to Disney World for the first time, and when Daniel discovered the wonders of summer camps. It started with a bang (both of the twins, Kevin and extended family all had a bad case of stomach flu [on New Years Day]), and will shortly end with a visit with family.

For me, 2009 has been all about "education". In January we initially contacted MCITP. By mid-February, we had begun the process of dealing with receiving services for Rachel and Simon -- although we didn't initially know that their problems were "autism" (we thought they were just "speech delayed"). My mid-March, we were specifically told that both of them were on the spectrum by a developmental pediatrician (just before leaving for our Disney World vacation). This was then confirmed by MCITP evaluations shortly after we returned. 1-2 weeks later, we were starting speech/OT in the home, and my research had begun. We've tried classroom settings and in-home ABA therapy. Diagnoses have been made and confirmed. We've been to a major research center in Baltimore (KKI) for evaluations and will continue to see the professionals there over the years. We've entered the IEP world and are preparing our nearly 3-year old twins for entry to special education preschools. And I've come to understand the importance of meeting their individual needs, even if it means separating them into different programs.

I never thought I would be in this situation, but now that I am, the education that I've received (and am continuing to develop) is definitely worth while (I just wish it didn't come as a consequence of having 2 children on the spectrum). I feel that so many people (parents, professionals, and others) are misinformed because of the lack of quality information available, and therefore the strangest treatments and theories are being brought forth, some of which can be quite harmful. As a parent of autistic children, I can only hope that I will never feel the level of desperation that has me put my children at any unnecessary risk in the hope of "finding a cure" or "reducing the damage".

Our journey is far from over, but it's a definite beginning. 2010 will bring us new schools (which will require me to put both of my 3-year-olds on a bus to go to school), a fight to keep a private program supported by the public schools, more evaluations (and possible enrollment in non-invasive studies), as well as other things that sitting right here right now I just can't anticipate. Additionally, other areas of our lives will continue to develop -- Daniel will be 5 in April and will begin kindergarten in September and Kevin and I will continue to celebrate our 12th (and nearly half of our 13th) year of marriage. And who knows what else will come? And through it all, will be my continuing education about autism and everything that comes with it.

So, much of 2009 has been about autism for me. But my life is good, my family is happy, and, when you think about it, what else really matters.

Goodbye 2009, Hello 2010! May everyone reading this have a Very Happy, Healthy and Prosperous Year!!!!!

Thursday, December 17, 2009

Things get strange....

.....well, I've finally (mostly) adjusted to the thought of separating the twins in a month or so. Even their sleeping is starting to get a little better (still adorable with them falling asleep together, and it's still taking forever, but once they're asleep, they've been STAYING asleep) -- me sleeping, well, that's another story that MAYBE I'll write a post about another time.

Then yesterday happened.

First of all, let me just say that I've been having a less-than-stellar week -- wouldn't go as far to say it's been a bad week, but it's been a bit stressful trying to get everything in taken care of in a limited amount of time -- I've been feeling like I'm running 5-10 minutes behind with everything I've been doing. We spent "parent group" on Wednesday morning talking about stress (guess it was felt with the holidays approaching it was a good time to bring up the subject of "stress") which I thought was quite funny since I had been racing all morning and my stress level was probably a bit on the high side. After taking care of the normal early-afternoon Wednesday activities, I finally had a chance to get onto the computer for a few minutes and check email and Facebook and maybe play some stupid online games for a little while. In my inbox was a message -- and the subject header was "MPAC may be closing. We need your help now."

This is the program that Simon has been placed in. Neither of the other programs available really address his needs, which is why I knew when Rachel was placed in CAPP that they were going to be separated. I'm still trying to gather information about what is actually going on, but every time I get an update, the news seems to be getting worse for the future of the program. It's not likely to affect Simon immediately, but the longer his placement is intended in this kind of program, the more likely it is that it will directly affect us. Currently, the program is "rallying the parents" to try to get them involved by notifying the county Board of Education to continue referring kids to the program. I would love to be involved, but since Simon hasn't started yet, I really don't feel like there is anything I can contribute (the Board of Ed meetings are January 13 and 20 and Simon will be starting on January 12).

If MPAC goes away, I'm really not sure what's going to happen for Simon. If it comes down to that, by the time it happens, hopefully his needs will have changed enough that the other programs offered will be sufficient, but based on where he is TODAY, that's just not an option. So, we'll have to see what happens.

And then, of course, last night (Wednesday night), the kids decided to wake up during the night. They went back to sleep, nicely on their own. I did have to go back in there after they had fallen asleep and transfer Simon back into his own bed, however.

I'm just hoping that everyone is just jumping the gun and that the Board of Education will realize that this program is helping many of the kids (if not all) who are being referred to the program and therefore it should be allowed to continue. Optimism may not always be the best way to go without stepping forward to make the desired results happen, but I will step in once I feel I have something to offer. Right now, I really don't think there is anything I can do.

Monday, December 7, 2009

Upon further reflection... am I doing with everything now that more time has passed? I think things are starting to get a little bit better. It's been a week since the meeting, and every day I've been going over everything -- how they are going to do in different programs, and how I am going to handle everything. And I think I'm finally starting to come to terms with it all. I still feel like it's wrong to separate them and it still hurts, but I do realize the need to send them to programs that will address each of their needs, which means separate programs. I still feel that I'm being made to sacrifice what's best for them in order to give each of them the best opportunity for success, but when I think about it in those terms, it reminds me that this is the way it has to be. And how much this will affect the dynamic between them and their own personal relationship, well, we'll never fully know how much impact this will have because I refuse to think in the "What if...." world. This is what they will know and I can still hope we can get them back together again before too long.

Now we are getting ready to start the insanity of getting everyone ready for their new programs. Simon has his initial orientation at MPAC on Wednesday and we are still waiting to hear from CAPP to set up Rachel's orientation (not expecting to hear anything until next week at the earliest). Then there will probably be at least 2 visits for each school prior to January 12 (their first days) to get everything set up properly and prepare them for their first day (since transitions are notoriously bad for autistic kids [even more so than a typical developing child]).

Schools will be closed for over a week with the holidays at the end of the month and then we'll have one more week with MCITP prior to making the transition. I know we've only been working with them for about 8 months, but it's hard to believe that our time with Infants and Toddlers is this close to ending. There's still a lot to do before we get there.....

Saturday, December 5, 2009

Makes it all worth while.....

Just a quick post about something that happened earlier today....

I had gone out for a couple of hours this morning -- Rachel was having an ABA session and I needed to run to Kohl's (HAD to take advantage of the 3 day sale) and make a quick grocery store run. I was gone for about 1.5-2 hours -- not too bad, but a little longer than I had planned....

When I got home, I sat down on the couch and all 3 kids came over and piled on me a bit....was a nice feeling (although not the most comfortable). Simon snuggled right into my left side and nuzzled in as close as he could get.

Then I heard it -- I LOVE YOU!!!!! It was clear as a bell, and so poignant that I almost cried. Instead, I picked him up, found room for him on my lap and gave him a HUGE hug and kiss and told him that I love him too!!!!

He's said this to me once before, but that was over 3 months ago. That time, it was as he was settling down for a nap after a very hard morning and he had fallen asleep shortly after saying it. This time, I had been out for a little while (he got to spend some quality time with his dad and brother while I was gone). But he stayed snuggly for about 20 minutes before going back to full-swing playing with his toys and siblings.

After the last week, this made me feel so warm and cozy inside -- it doesn't solve any of my problems, but it's so nice to hear that my baby loves me!!!!! (I knew that before, but hearing it is always special.)

Thursday, December 3, 2009

Dealing With the Aftermath

Things have been really hard for me the last couple of days. I'd been preparing myself for quite some time (at least 6 weeks) that Rachel and Simon were going to be separated -- there was barely an extremely slim chance that they would rightfully be placed in the same program -- but now that it's happened, I can't seem to deal with it.

When we first visited MPAC, I remember leaving there thinking that MAYBE Rachel will do all right here, but Simon -- this is definitely the place for him. Then we saw CAPP (about 10 minutes later) and I had that same conviction that this was the program that was right for Rachel. At that moment I KNEW that they were going to be going to separate programs (even though all my preschool visits have included [and almost been about] my attempts to try to determine if the program would fit both of my kids together). For 6 weeks I've been telling myself that the committee would see things that way. But, since it hadn't officially happened yet, I kept that slim hope alive that they would see something that I or the team working with the twins hadn't seen. Apparently, I've been counting on that. Now that the expected has happened, I feel like the results of the meetings are wrong.

All right -- that's a bit of an overstatement. I do believe the decisions were right -- MPAC really is a great program for Simon; CAPP is a great program for Rachel and I truly believe they will both thrive in their respective programs. But (and please forgive me if this statement doesn't seem to make sense -- it makes perfect sense to me) right now it feels like I have to sacrifice what is best for THEM in order to address what's the best for each of them. The individual side is more important right now -- they have to learn how to cope with things in general in order to be able to cope with others, including each other. And the good part is that they do have each other to lean on.

But they are staples (and in my opinion necessary ones) for each other -- they help regulate each other to a certain degree. Simon cannot fall asleep at night without feeling his sister right next to him. Even when he wakes up during the night, he needs her closeness to help him settle back to sleep. And we're starting to see this during the day as well in their play. They tend to gravitate towards each other. I wouldn't fully say they "interact", but they do "feel" each other. What will happen to that when they're separated for 7+ hours every day? Will that bond continue to grow or will it be severed?

I can't help it -- they're only going to be 3 years old. At this point, I truly believe that it's intended for twins to be together. I've always said that I may believe some absolutes, but I will look at each situation separately when it comes to my children and make up my mind as to what is truly the best decision, and this time I agree with the above absolute. To that end, I'll debate the pluses and minuses once they are truly school-aged (even though my personal philosophy says to keep them together at least through kindergarten) but they're not even 3 and I feel like I'm FORCING them apart. Every time I think about it, it seems to get worse rather than better.

Again, I KNOW that I need to focus on their individual needs rather than the "twinness" needs for right now. But why do I have to sacrifice one for the other?

Tuesday, December 1, 2009

No Surprises

Today (IEP Day) has been, well, a VERY long day. Well, I suppose things started last night. All I can say is I can't figure out how kids just seem to know what is the worst possible time to, well, damage themselves a bit.

Let's start with Simon last night. When we took them upstairs to begin the "nighttime routine", Daniel just started playing with him right away and knocked him head first into his bureau. Fortunately, other than a short stint of crying, there was no harm done. But then, when we were going into the final stretch of preparing for bed, he tripped over Kevin's leg, right into the bedpost. He didn't come out as cleanly that time. He immediately had a large bump growing out of his forehead, that required an immediate application of ice. Well, if anyone reading this has ever tried to put ice on a head injury in a 34 month old autistic child and was successful, PLEASE tell me how you did it!!!! We took short stints trying to get as much benefit from each icing period. Fortunately, by the time he woke up this morning, he still had a bump but it didn't dominate his face as we were afraid would happen last night.

Then, this morning, Kevin and Rachel were playing in the same ways that they have played regularly for I'm not even sure how long -- playing the "Swoop Swoop" game. Rachel was already crying when I brought her into the room after getting her dressed -- I stayed out of the room to get Daniel's clothes for the day and pick up the twins' room -- but something changed in her crying. When I came into the room and asked her why she was crying, the look on Kevin's face told me that something was SERIOUSLY wrong. He informed me that he felt her arm pop during the game and that she wasn't using her left arm quite right. We learned during the summer that Rachel has "nursemaid's elbow" when her shoulder popped out with minimal apparent cause. When I was trying to comfort her and I noticed that she was rubbing her left eye with her right hand, I realized we had a problem and I immediately brought her downstairs and put her in the car to take her to the ER (I know better than to take a chance of not popping her arm back properly). As we were approaching the ER, I noticed that she had stopped crying. I looked back and she was holding her sippy cup with both hands and was reaching (with her left hand) for (and successfully grabbing) a toy on the seat. So, if she had dislocated a joint in her left arm, it had popped back in on its own. When I saw her successfully grab that toy, we just came home and went about the day as planned.

And all of that prior to 8am!!!!!

The meeting though, started at 10. When we arrived, Rachel found her favorite book (Goodnight Moon) and was determined to keep it. So, when it was time for us all to come into the room for the meeting, the committee got to, let's say, see her "determination in action". She stayed in the room for about 10-15 minutes before she joined Simon in the classroom. We went through the whole actual IEP and determined eligibility, set goals and objectives and there was no question as to what her placement would be -- she is an ideal candidate for CAPP which is the autism program offered by Montgomery County, MD schools that is based on the ABA system. There was no surprise about this placement at all for me, Kevin, or probably anyone else. But at this point, I knew that the dream of keeping them together was pretty much completely dead (Simon wouldn't do well at CAPP -- if there was any hope of keeping them together, Rachel's placement would have had to be to MPAC).

After we were done with Rachel, we immediately jumped into Simon's meeting. I think I was really hoping for a break, especially to get my head on straight after realizing that the expected result for Rachel came true and keeping them together was a lost dream. But one of the committee members had to return to the central office so time was of the essence. We did the same procedure as we did for Rachel and, at the end, they suggested sending him to MPAC. Kevin was sitting next to me and I could hear the sigh of relief coming from him. This was, again, the result we were expecting. But the same time I could hear Kevin's sigh, I felt the floor fall out from under me. I already knew the dream was dead, but having it directly facing me in the eye, well, I'm not sure exactly what it's done.

I'm not saying I'm disappointed -- because I'm not. These are the best results and what we were hoping for in most ways. But I still can't get over the fact that they are going to be attending separate programs. I'll adjust to it, I'm sure. But it's going to take some time.

Friday, November 27, 2009

Why am I so afraid?

Well, the IEP meeting is in 4 days -- yes, only 4 days from now. I've visited all available programs (one of them twice), did a lot of reading and researching, spoke to everyone working with them in IE services -- I SHOULD be prepared. So, why am I so terrified of this meeting?

I think there are 4 or 5 major things that are weighing on my mind right about now....

1. Will the IEP board agree with the recommendations in the reports in front of them or will they have other ideas in mind? The impression that I've been given is that this should be a resounding "YES" (agreeing with the recommendations, I mean). Because the meeting is taking place at MCITP rather than in the central office (as is typically the case), the committee will be relatively "stacked" with people who are familiar with these two children and their needs. And the recommendations in these reports reflect not only what MCITP feels is appropriate, but I am in full agreement with them. I'm prepared to discuss each of the twins to be sure they are enrolled in the preschool programs I feel is right for their current needs. So, this is of minimal concern right about now.

2. If they do agree, who's to say that the recommendations are right in the first place? And, if they're wrong, what will the consequences be in the time it takes to fix the mistakes? This is probably a fear that never fully goes away. We've already experienced once that not everything we try will be successful. Sometimes it's important to try something, give it a reasonable chance to work, and then be prepared to try something else if the first plan is unsuccessful. These are children we're talking about -- recommendations are based on what we've seen and the experiences of those who have been working in this field long enough to be comfortable to make these kinds of suggestions. If my kids don't match what is expected, the recommendations are going to be less than ideal. But, this falls under the category of "what if" and I shouldn't be going there right about now -- that needs to wait until later....

3. What questions am I going to have to answer and point out about my kids? And, in the end I'll get (maybe) a 5-10 minute break before I have to do it again. This really seems to me to fall under the idea of determining the twins' eligibility for services. Admitting my children's shortcomings is not something that thrills me. Having to do it twice with only a short break between the meetings is not going to be a "favorite" part of the day.

4. Will I lose my dream of keeping them together? I'm nearly certain this answer is "YES" because, due to Rachel and Simon's differing needs, the program that is good for Rachel will not be good for Simon and vice versa. I've been trying to prepare myself for this eventuality all month long, but I can't let go of that last little hope that the committee will be able to come up with something that will allow them to stay together. Foolish of me, I know.....

I've been going through these 4 things all day today trying to determine if there's anything more I can do to "prepare" myself for Tuesday morning. I'm not sure if I can. Much of what's bothering me here is ME. We'll do fine and I know that I have a lot of people really pulling for finding the best solutions for both Rachel and for Simon. At least 1 of those people (the parent educator that we've been working with from the very beginning) will be sitting in this meeting with me and Kevin. And, of course, Kevin and I want to find what will be best work for each of the twins. I just need to figure out how to survive the next few days. When the meeting is over, I'll have to deal with the aftermath (whatever that will be or whatever that means), but I'll deal with that when the meeting is done.

Sunday, November 22, 2009

We think we know what's happening now....

....notice I emphasize the word "THINK".

The IEP meeting is now 9 days away. I am so UNBELIEVABLY grateful to the staff at MCITP Upcounty (one person in particular) who has called in favors galore to allow us to hold the meeting in their facility rather than going to the central office. This will allow Rachel and Simon to play in familiar surroundings and we will get several people to watch them when they lose the ability to sit through this anticipated 2 hour meeting. They will be able to get their normally scheduled speech therapy (Rachel) and PT (Simon) and will even get to have lunch there, while Kevin and I can focus on what needs to be done, specifically, this meeting.

As I mentioned in my previous post, after visiting PEP, I truly believe that the right decision is to send Simon to MPAC and Rachel to CAPP. For Rachel, we have rarely questioned which would be the right program for her since she does so well with the one-on-one ABA therapy she's currently receiving through CSAAC. Simon has become more of the "wildcard" in terms of who will be more difficult to decide which would be the best program.

The Parent Educator/social worker came over here to talk to me on Friday and we discussed things for this meeting, and she told me that she felt everyone was going to likely feel the same way, which means that this meeting should go pretty much as we expect. She informed me that the administrator for MPAC also felt that Simon would do well in her program (she is apparently a very good judge of determining which children will succeed in her programs) which also seems to have some weight in people's minds. Now we just need to make sure that everyone sees things the same ways with the need to enroll them into various appropriate services (speech, PT, OT). Additionally, she will be coming over again on Wednesday (before the holiday weekend) to make sure that we don't have any other questions, as that will likely be our last chance to ask any questions and fine-tune our strategy.

I'm still unhappy about splitting them up though. I think I'm still holding onto just the slightest hope that we can find something that will make everything work with them in the same program. I know that's not really possible, but I don't think I can let that go until after the meeting is over, when I have the final answer.

But soon we will have our answer. Then we just have to figure out how to go about making this transition successful.

Tuesday, November 17, 2009

Preschool Visits are done...

.....and I got what I was hoping out of this visit -- confirmation that it's not an ideal choice for either of my kids. PEP is a good program overall. But right now, I don't think that neither Rachel nor Simon will benefit from that level of service -- they just need both more time (in the form of a longer day) and more intensity. I visited 3 of the PEP programs today -- PEP-Classic, PEP-INC and PEP-Beginnings. Classic and INC are the two programs that were considered appropriate for my kids at this time.

I also took Simon back to MPAC yesterday for a visit so that I can get an idea of how he would do with their program. It really does seem to be a good fit. They don't focus on a single style of teaching, but work more globally with these kids. Considering that we don't really seem to know what works best for Simon, having a less specific program really seems to work more towards his strengths and needs and will also be sure he doesn't fall into a rut in expecting something specific. Simon tends to get locked into something once he gets used to it. This kind of program will reduce that dependence, I think. Additionally, it's a longer day which will allow him to receive the wide range of services I think he requires -- speech, PT and OT as well as classroom time, without sacrificing his learning.

Now, with only 2 weeks (from today) to go before our meeting we need to make sure that we get the services we feel are appropriate and correct. But, at the same time, we need to go into the meeting with an open mind and listen to what they have to say. That means that the "opinionated" Ilene needs to be able to keep her mouth shut. It's not something that I excel at. But, I will have to do my best....

Saturday, November 14, 2009

Another Week Down

And the meeting is looming ahead of us -- only about 2.5 weeks left before we sit in a room with a committee and try to make decisions for these two children that will affect them until they begin kindergarten. All right -- it's not quite true. Decisions can be changed and as we see how they respond it'll be a bit more fluid than I'm making sound right about now. Additionally, there will be at least 2 more meetings before we begin kindergarten.

I'm preparing myself that the most important thing is for me to be "satisfied" with the results of the meeting. I don't think I'll be able to walk out of the meeting "happy". The problem is that there are 2 things that I want to see happen and, as of right now, they can't both happen at the same time.

What's most important is that we find programs that are best for each of the twins. Right now we have an idea of what that is. I'll be visiting the final program on Tuesday and bringing Simon in to visit one of the probable preschools on Monday to see how he does. Both of those visits will give us a lot of information. I'm also meeting with someone from MCITP at the end of the week to try and organize my thoughts once I've had a little bit of time to digest the new information. I don't know if my opinions will change following these 2 visits as to what is best for Rachel and what is best for Simon, but I know that's a possibility. The good news is both Kevin and I are on the same page about everything (as of right now).

On the other hand, for the last few weeks, we've been seeing them really enjoy being together (to the point where they've been falling asleep in the same bed). This is something I've wanted to see since I was 6 weeks pregnant and first learned we were going to have twins. This includes moments of seeing them sharing a crib in the hospital just after birth. I finally got that picture when they were 7 days old. But I've wanted to continue to see the growth of that relationship, and now I'm finally starting to see that relationship emerge. Separating them right now just feels like such the wrong thing to do. I know that this is only for a portion of the day, but it's a LARGE portion of the day. They'll be in school for upwards of 6 hrs/day plus transportation time. If losing the nap helps to eliminate some of the sleep issues we've been seeing for the last several months, they'll be sleeping for 10-12 hrs/day. That leaves approximately 5 hours (on Monday-Friday) of "together time". Is that going to be enough?

Again, I know that what's most important is finding the appropriate program for each of them, and if it means separate programs, then that's what we'll do. If it comes down to putting them in a single program just to make me happy, that's a bad result to this meeting. If they are separated, as of right now, I'd call that a "satisfactory" result and over time, when I can get over this "dream" of mine to keep them together through at least kindergarten, I can learn to be "happy".

Right now, I just don't know.

Thursday, November 5, 2009

Changes are Everywhere... do we as parents know when a change is a good thing or a bad thing?

We've been having a bit of a problem with Rachel, on occasion (but consistent) for about a month now. It's almost like she refuses to do anything from anyone (other than me and Kevin) who isn't part of CSAAC. If it's not ABA, it's not worth her time and effort. We spent a long time getting her ready to participate in Circle Time for her to participate in the Wednesday session at school with Simon so that I can join the concurrent Parent Group. For about a month now, she REFUSES to sit and cooperate. And this has spread into the rest of the session on Wednesdays (very quickly). At first, the teachers thought that perhaps she wasn't feeling well (the start of these behaviors worked out, timing-wise, consistent with her having a cold). But the moment she was in the car (twice) and the teachers were no longer in sight, she was a VERY happy little girl.

Additionally, since MTW ended last month, she's been receiving speech therapy weekly (one hr/wk) with the SLP that we've been working with from the beginning. Every time she comes over, Rachel becomes extremely obstinate and refuses to cooperate in any way, unless it matches her agenda. This is especially true when the SLP works with her at lunchtime (which I'm grateful for the help). For the last 2 weeks, she refuses to eat much of anything, including the specific items that she asks for while the session is going on. I intentionally gave her yogurt this last Tuesday because I was giving Simon yogurt and she got very upset the one time he was getting yogurt and she wasn't. I ended up having to pull out cheese for her lunch, despite the fact that she kept DEMANDING the yogurt (and then refusing to take any of it).

With their birthday coming up in a couple of months, we have to consider how best to prepare them (in this case, her) for preschool. No matter which school she attends, she will be expected to participate in group activities and accept leadership from adults. This is something we've been working with her for a while -- and it looked like she was making a lot of progress. Now I'm not so sure. Is it that the "honeymoon period" is over? It doesn't seem so, because her ABA sessions continue to go just fine (as long as she's not too tired). Do we need to change what we're doing with her right about now in order to help prepare her? Or do we just need to stick with it and force it to be successful.

I really wish I had the answers. We're quickly running out of time.

(reading the last couple of posts, you'd never believe that my life was better right about now, would you?)

Tuesday, November 3, 2009

The good news is.....'s nearly 9pm on November 3rd, and my attitude is still vastly improved over the last several months. The bad news is I'm EXHAUSTED!!!!!! Daylight savings time ending, in theory, gives you an hour of extra sleep. However, since entering parenthood, I have NEVER experienced that phenomenon. I have "lost" the hour sleep when daylight savings time begins, however. Why is that?

The frustrating thing right now (but still cute) is Simon's new habit of climbing into Rachel's bed every night. She's fallen asleep like that 3 times, Simon twice. They are just so adorable seeing them like that, but Simon really is bothering her at times when he's in her bed. I do think that she's inviting him in though. When he first noticed it, Kevin called for me to bring up the camera -- apparently, they were "spooning". By the time I got the camera up there, they had both changed positions and I never got to see the image that Kevin described. But they were still adorable to behold and it was another chance to see that picture that I had from the moment I learned we were having twins -- the two of them lying in bed together. I expected this when they were newborns -- wasn't planning on it when they were nearly 3 years old -- but I'll take it!!!!!

But things have been really going much better lately. I don't know if it's because of that "day off" we took last week or something else led to this change, but I'm feeling much better about everything right about now. Maybe I've just gotten used to the look of the calendar (with the kids schedules filled in almost completely). Either way, I'm just grateful that life is better these days.

Sunday, November 1, 2009

It's A New Month....

.....and a new attitude has emerged.

We actually took a "day off" on Friday -- since I'd already canceled Rachel's ABA session to attend something at Daniel's school, I declared Friday, October 30, 2009 as an "Autism Free Day". We didn't quite make it that far, but we were close. We attended a playgroup that we hadn't had the time to attend for MONTHS. We didn't have to rush home for an ABA session with CSAAC. I didn't even stop Simon from "stimming" on toys, as long as things didn't get out of control. And I think we were all the better for it.

And now we're back to reality. Halloween is over. November is here. And the world is a better place for me right now. I'm not exactly sure how it happened, but I'm just happy it has. Tomorrow, ABA sessions begin again in earnest, and Daniel will be home (no school for some reason). But I've arranged a playdate for him so he should have fun and I should be able to spend a little time with Simon.

So, we're ready for the new month around here. And hopefully the new attitude will stick around for a while......

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.....

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)

Tuesday, August 25, 2009

Visit to KKI

Well, yesterday we got the kids up early, piled into the car and took the just over an hour drive to Kennedy Krieger Institute. Funnily enough, it's only about a mile away from my brother's former apartment (when he lived in Baltimore). Overall, we were there from about 8:15 or so until nearly 3:30 for the 2 appointments (developmental pediatrician for both kids). It was, needless to say, a VERY long day.

When we left the clinic, we did so having learned nothing new. Most of what was done was a repeat of what the psychologist did last month. Even the impressions were the same. The only new thing we walked out of KKI with that we didn't have before was a lab slip so that each of the twins could undergo genetic testing to see if this would reveal an underlying cause. However, her impressions were that these tests wouldn't reveal anything.

I was very disappointed. I'm not completely sure why. I didn't think we would be leaving there with any new revelations. We weren't going to learn the cause in this one visit. We weren't going to answer all the questions with one doctor taking a little bit of time to look them over and test them. But I think I expected to walk out of there feeling like we were getting closer to an answer. Or, if not, be more frustrated by having a bunch of NEW questions that I hadn't considered before. But instead, it felt like the visit was a big waste of everyone's time. Most of what the doctor collected she could have gathered by arranging a phone interview (or 2) with me while the kids were napping and pulling data from the county psychologist's reports.

I suppose this is an oversimplification of what the visit was like. The doctor DID examine each of them, and was observing them closely while she was interviewing me. And by re-doing the tests previously performed by the psychologist, she was also able to make her own judgments as to where they are and where their needs lie. But it really just felt that the time could have been better spent in other ways. And in all the hype and waiting to get this appointment, I really thought it would be much more.

Wednesday, August 19, 2009

And the diagnosis is.....


Not Aspergers. Not PDD-NOS. Autism. Both Rachel and Simon meet the DSM-IV criteria for Autism.

Not that this is a surprise exactly. But hearing it from the psychologist, and seeing it in black and white in her seems to give it a sense of finality. She informed us during our meeting this afternoon that it's not a lifetime diagnosis -- she gave us this after observing both of them on 2 separate occasions, and on reports provided by both me and their teachers. Others may not concur with her findings. Even so, it's still hard to take.

We have the actual medical appointment at Kennedy Krieger next week, which will hopefully give us more answers, but it's more likely to create more questions. They will probably perform genetic testing (given that as twins they are both affected) and will probably give us their diagnosis (which will probably match the psychologist's).

But now I'm left to figure out why this happened (like I haven't been doing this for the last 5 months). A possibility I hadn't thought of before was a medication I took during their pregnancy in order to ensure I didn't have a Crohn's flare. It's a category D medication -- I was warned that risks during pregnancy were unknown. But it was believed to be safe -- certainly safer than me having a flare during the pregnancy. Now I'm not so sure.....

Tuesday, August 18, 2009

Expect the worst, but hope for the best....

....That is often my philosophy. And not just in the context of things having to do with autism, but in general. Disappointment can be hard to take, but if you don't expect anything, then you won't be disappointed when things don't work out as anticipated.

It's so nice when things work out though.....

Yesterday, Rachel had her initial clinic visit with CSAAC. During this visit, they called her to the table several times and tested her with the trials. She responded really well, and didn't cause too much of a fuss. She liked her motivators/reinforcers that the team had pulled together for her. And she genuinely seemed to enjoy the positive accolades she was receiving for correctly doing the tasks. The purpose of this exercize was multi-fold -- this visit allowed her to be introduced to the members of her team. All of the techs as well as the teacher worked with her at the table while observed by the psychologist. Determinations were made as to her current level and abilities and likes and dislikes were glimpsed. Additionally, it allowed me to see what these trials are really about and how they work, something that I have observed through a 1-way window at the preschool she had been attending, but couldn't really see or hear what was going on, so it was educational for me too.

Today, 2 of the techs came to the house to begin in-home ABA. I have been dreading this for a VERY long time -- again, with the philosphy of expect the worst (and wasn't even really hoping for the best, given how things had been going along these lines). I had taken the time to set up her room as soon as Simon was awoken from his nap and, as soon as the techs arrived, I took Rachel upstairs, changed her diaper and left her in their capable hands. I was expecting to hear screaming for the next hour. Those screams rarely came. During the 2 hour session, every once in a while, I would hear a negative sound -- a scream or a determined cry. But more often then not, every time I could hear her, she was laughing or giving a delighted shriek, or being somewhat talkative.

Now, will this continue? I don't know. This may just be a "honeymoon" period. But the teacher who had been administering the ABA in the program she had been attending told me that she felt Rachel would take to this relatively quickly since she was used to the idea of being called to the table -- she really does like the reinforcement. I hope she's right and that all of my worry was pointless.

Saturday, August 15, 2009

Can you hear that?

Because neither Rachel nor Simon were talking at the age of 2, as parents we were concerned and contacted the county and our pediatrician for assistance. That really is where all of this started. In the back of our minds, we had questions about whether Simon was autistic, but it was in the background. The pediatrician referred us not only to the county, but to a developmental pediatrician and for the twins to both have a hearing test.

So, we took them for hearing tests at the beginning of April, and we'll just say it went poorly. Simon SCREAMED the whole time and they weren't able to get any measurements on him. Rachel wasn't much better. And she had recently been sick so she had fluid in her middle ear which impacted the results they were able to get. We brought Simon back (and planned to bring Rachel as well) about 2 weeks later to try again, and didn't get any better results. Things went so badly that the recommendation was to have them sedated for the ABR (Auditory Brainstem Response) test battery -- something that I was vehemently opposed to. I didn't want them sedating either one of them, especially when I was confident that their hearing was just fine. I was in such a state at the time that I was on the verge of just shutting down. The audiologist seemed to recognize that I was having a real problem in talking to her and she volunteered to talk to the speech pathologist with the county (I believe to get her to convince me to do this test). I approved this communication -- and the overall result was that we would wait and redo these tests in 3 months for both of them to see if we can get a better response. In the meantime, their teachers would watch to see if there was any hearing impairment which would require testing to be more immediate. If the testing results were still the same, then I would consider the ABR tests for both of the twins. It was a compromise, which, at the time, I felt was fair.

It's been 3 months since that decision was made, and last month I was reminded that we still needed accurate hearing tests results. I know I agreed to this compromise, so, even though I dreaded it, I contacted the audiologist and scheduled the appointments -- Simon was for August 14 and Rachel was for the 26th. After scheduling the appointment, I discussed with the speech pathologist ways to prepare Simon (in particular) for this test to make it as painless for everyone as possible. It was relatively last minute, but we made the attempt.

Well, yesterday was the 14th, and the aforementioned speech pathologist volunteered to come with me for Simon's hearing test. She had spoken with the audiologist prior to the visit about trying to test his hearing without putting anything into his ears FIRST to see if they can get the results they needed without upsetting him too much. However, as we were approaching the building, Simon seemed to recognize exactly where we were heading (he has an unbelievable memory for things he doesn't like) and became agitated. By the time we entered the building and the office, he was near hysterical. By the time we were called in, he was GONE. It took a while, but the audiologist was able to observe him during the behavioral testing and was able to get consistent results which allowed her to form an opinion about his hearing. His hearing is fine in the upper levels with a mild questionable hearing loss in the lower tones, but this shouldn't affect speech development. So, no sedation was necessary. However, she does want him to come back in 3 months.

And, much to my surprise, they were able to test Rachel as well. She didn't have any of the problems that Simon had -- she went into the sound-proof booth relatively willingly and was intrigued by the toys that were available for her to play with. She responded to all the sounds and voices presented to her indicating that her hearing is just fine. Additionally, since she had previously tested with fluid in her middle ear back in April, when they repeated the tympanogram this was also perfectly normal.

So, now we don't have to go back there for another 3 months for a repeat test for Simon, and neither of the twins need to be sedated for the ABR test. It wasn't a pleasant experience, but it's over -- that's the important part -- and neither of them have significant hearing loss which will impair their development.

Thursday, August 13, 2009

Things Keep Happening....'s amazing how things change over all possible ways.

I have begun writing this post about 3 times this week, decided to go to bed, and then deleted what I wrote the next day. Maybe this one will end up actually making it onto the blog....

I know it's been a few weeks since my last post. The kids and I spent a week with Kevin's family, which was, I think, a welcome change for everyone -- it was nice for the kids to spend time with family they don't get to see often, and it was great for me to have the help and the break. However, Kevin was still working and was only there for the weekends. But, this is the 2nd year we've done this, and it's worked both times, despite our missing him. And the vacation ended with my 20-year high school reunion which I was (at least tangentially) involved in planning. I'm not really sure why the reunion was so important to me since I wasn't in ANY way popular in high school and very few of my high school friends were going to attend -- probably because it was something so distant from "autism" for me to focus on....

The timing for this vacation was actually very good. Daniel's camp(s) were ending (by design), the twins' school was ending for summer break (we only missed a home visit) and my class was on it's 3 week hiatus (although I did have a home taping session that needed to be scheduled, but we did that after we got back). I knew that we were preparing to start CSAAC shortly after getting back, so a break was definitely welcome for me (will talk about them in another post). Little did I know what was yet to come....

We arrived home this past Monday afternoon. On the calendar for the week was the taping session for More Than Words, gym class for the twins (having missed 2 consecutive weeks and done with Daniel in tow), and a hearing test for Simon (which was an unqualified disaster in April). Rachel will also be having a repeat hearing test later in the month (her attempt in April was only slightly better than Simon's) and so their teachers worked with them a bit getting used to having something put over their ears, which will hopefully prepare them for this testing. It's important to know if there are issues with their hearing which will lead to issues in language development. However, I truly don't believe that they have any hearing issues and I refuse to allow them to sedate either of them. But if this testing doesn't work this month, I will probably have little choice.

KKI has been weighing on my mind a lot over the last few weeks. I have been feeling some regrets not taking the "cancellation" appointment that was offered to us in July, mainly because I just wasn't hearing anything from them, despite KNOWING that we really couldn't have done it. My mother knows someone who is related to someone there, and I have been given this person's phone number in an attempt to get an appointment quicker. But it's hard to call an elderly women who I haven't spoken to in YEARS to ask her to contact her nephew (or cousin or someone) so that my kids can get bumped up the waiting list at a Kennedy Krieger. I just wasn't sure how to do it, and was putting it off....

So, when we got back from Connecticut, I called KKI to ask what our status on the list was at this point in time. I was informed that, even though the twins are "fast-tracked" since they are under 3 years of age, the typical wait time is 4-6 months (this is what I learned after a couple of phone calls to them this week). It's been 3.5 months and we are still waiting. Then today, I have a voicemail from them -- they have appointments for BOTH of the twins on August 24 in the morning -- would we be interested in booking these times. The first thing I think of is, "HECK YES!!!!!!!!!!!!", but I answer far more civilly than that. We did have a previously scheduled appointment for that morning, but we will reschedule that since it should be easier to do that than to find a better time with KKI.

So, it's been a crazy week, and, as I titled this post, things keep happening. But hopefully this will give us the information that we need to understand what's happening to our family and will make it easier to deal with everything.....

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.