Kennedy Krieger -- Any Regrets?

Well, after nearly 2 months of waiting for an appointment, I received a phone call from Kennedy Krieger (KKI) today -- well, 2 in fact (they need to talk to each other over there -- only 1 call for an appointment was necessary). They had a last minute cancellation for an OT appointment for tomorrow morning (9-11:30) and wanted to know if I was interested in booking it for Rachel. I declined. Daniel has to be at camp at 9 and we have a field trip for both Rachel and Simon at 9 and because it was such a last minute thing, Kevin can't take the time to be home to take any of the other kids to their activities. So, I've pushed off KKI. Is that the right decision? Right now, I have to say "yes". Autism as a whole is interfering with all of our lives. I have to try to find a balance. And making significant changes to existing plans at the last minute is giving autism the upper hand.

I was really hoping that they would be able to see both Rachel and Simon on the same day -- just needed to find someone to take care of Daniel for the day. It may have even been possible to take him with us. When I was on the phone KKI, it didn't sound like that was going to happen. They are trying to get the 2 appointments for each of them during the summer. If we were able to take this appointment for OT, we would have had to go back on Monday for the neurologist to complete her evaluation, which would have left just Simon to be seen. They are hoping to schedule him for the end of July. But that still leaves the question about why they don't want the 2 of them to be seen by a speech and language specialist. So, even under the best of circumstances, it looks like we're going to have to make a minimum of 2 trips up to Baltimore to complete these evaluations. The question following that realization is where is the time going to come from in order to take those 2 trips?

This really isn't a "down in the dumps" post as many of my others have been. Just voicing my concerns now so that in a couple of days (or hours or weeks or months), if I regret the decision to not grab the first available appointment and writing down my thoughts so I can look back and maybe not feel so guilty of my decision.

Everything gets better....

...in general, I've been having a low-key autism week, which is a nice change of pace. The weather has been better, allowing me to spend some time outside with the kids. We even went to a playground on Wednesday (without Kevin) and I was able to let the kids play without either of them running off (although we got close once or twice). Daniel's been at camp and having a great time, which is nice to see -- he's been trapped in the house with me and his brother and sister for too long. The twins had their gym class without much incident....overall, it's been a really good week.

The only other true "autism" activity for the week was the start of the Hanen course "More Than Words" (www.hanen.org). Technically, taking this course is a requirement for me in order for Simon (specifically) to be enrolled in his school, but I think I would take advantage of it even if I wasn't obligated. The orientation meeting last night was interesting with an added benefit of forcing me to leave the house for a few hours, without the kids, and just take a kind of break with others who are in a similar position (I wouldn't call this a true "break" since this class is specifically to teach techniques in helping kids on the autism spectrum). And I confirmed with the "facilitator" that, even though Rachel is not exactly in the same program any more (but not really sure where she is on that front), she will still be a focus for the in-home session portion of the class. After all, she is also on the spectrum, she is also my child, and she should be able to benefit from what the class has to offer.

CSAAC is still weighing on my mind. I think that now I've taken some time to digest not only what they've told me (in terms of what they'd be doing with the in-home ABA), but trying to envision how it's actually going to work when it comes to the scheduling. It's going to be nuts -- don't get me wrong -- but now I'm coming to terms with the knowledge that, at least for the next 6 months or so, sanity is a luxury and when it's there I need to embrace it because who knows how long it will last. I also need to learn how to control my stress level, because lately it's been controlling me (to the point where it is literally making me sick). So, I've been finding myself taking a bit more of a low-key-matter-of-fact attitude over the last couple of days. I don't know if I can make this last, but I will do my best.

So, next week things will continue on. Daniel will continue at his current camp for another week (well, 4 days). Rachel and Simon have another field trip scheduled to a local playground, and hopefully this time the weather will cooperate. Also, I hope I'll also get a little better feeling as to where Rachel stands with the 2 programs we are currently enrolled (CSAAC and the MCITP preschool). And it's a short work week, so Kevin will be home (for sure) on Friday, and likely Thursday as well (for my benefit) to allow me a bit more of a break. We never know for sure how things will go, but things are definitely looking up.

Visit to CSAAC

Well, this morning we dropped Daniel off at camp (found a 2-week morning camp for him thanks to Rachel and Simon's wonderful team at MCITP) and headed immediately over to CSAAC for Rachel's appointment. They are very nice -- we were put into a room with a lot of toys, and both Rachel and Simon were having a lot of fun. Rachel was playing with books and she found a doll with eyes that open and shut -- none of her dolls at home are like that -- she spent about 3-4 minutes trying to figure out what happened to the doll's eyes when she lay the baby down. It was really funny to watch -- and she just didn't get it -- when I held up the baby and the eyes opened, Rachel immediately started touching the eyes and lying the baby back down again. Like I said, it was really cute, and very appropriate behavior (something that I'm always excited to see)!

Then we were called into another room -- once again, there were plenty of toys, but this time I spent about an hour being interviewed about Rachel. And I realized something -- it's HARD to separate what's happening between the 2 of them. I start telling them about something and then realize I'm talking about Simon. I kept having to stop and think about what child I was talking about. Simon actually surprised me as he was playing -- there were letter flashcards that had been spilled out on the floor (by Rachel I believe). He picked up the "K" card and brought it over to me and said "KAY" and then continued on with reciting the alphabet the way we had been doing over the previous several days. I always KNEW he was a really bright little guy!!!!! The psychologist also spent a little bit of time engaging Rachel and trying to assess where her biggest issues lie. Overall, Rachel was very happy to be there with all the new things to play with and it was a pleasant visit.

We talked about what the in-home ABA would entail as well as the program overall. And, once again, I voiced my concerns of whether this REALLY is the right thing for her since she doesn't respond well to being told what to do (even though EVERYONE has told me that these are the kids that respond BEST to ABA). I still just can't see or envision it being successful. I am hoping I'm wrong. She reassured me by explaining that it really is a gradual process -- Rachel won't like it at first, but once she realizes she gets rewards for completing every little task, she's going to want to run to the table. So, we're going to give this a try.

The only problem now is can I survive this? The CSAAC portion of this adventure will start in approximatley 1 month. We will be doing in-home ABA for about 10 hours per week, for which I (or at least SOMEONE) has to be at home. Periodically (once per month or once every 2 weeks [blanking right now]) I will have to take her BACK to CSAAC for a team meeting to review her progress and potentially make changes to the focus of her in-home sessions. At some point, Simon will be going back to school which meets Tuesday/Thursday from 11-1 and Wednesday from 11-12:30. I do not need to be present for the T/Th sessions, but I participate in a parent group on Wednesdays, so hopefully we'll also be enrolling Rachel with her brother for that day so I can participate with the other parents for a kind of "support group" which I'm sure I'm in desparate need of joining (but who knows). Finally, on September 9, Daniel goes back to school from Monday through Friday -- on M/W he's there from 9-1; on T/Th/F he's there from 9-12:30. Once again, I'm not there with him for that, but I can't be late picking him up (or early dropping him off).

In addition, during the next 6 months, we're going to have to evaluate what preschool programs are appropriate for each of the twins separately -- would enrolling them both in the same program be in their best interests or should we look at other options? This is necessary because all of their current programs end when they turn 3. So, we'll be getting ready to start the IEP process (unknown exactly what that will entail).

So, I'm just envisioning the next 6 months to be about keeping enough sanity to simply function. Right now I'm not sure how that's possible, but we all do what we have to do. I just hope we can keep everyone where they need to be and I won't be the cause of sacrificing services for anyone.

The Bad Week Seems to Have Finally Ended...

....this week has not been my best. Between tantrums, breakdowns and unjustified anger and frustration, I was starting to think this week would never end -- and that was just me. And what makes it so bad was that it all started with something that should have been a positive -- hearing from CSAAC to help us make sure that Rachel was getting all the services she needs.

One of the reasons this call may have set me off was because we were waiting for phone calls for 2 different types of services. One was CSAAC and getting the pieces in place for in-home ABA. The other was Kennedy Krieger Institute (KKI) to have a medical evaluation to try and determine a more specific diagnosis than just "Autism Spectrum Disorder" and perhaps learn a possible cause of why this has happened to them. KKI called me to say that they would be happy to see them back on May 15 and I would hear back in a couple of weeks to schedule a time. It had been over a month and NOTHING! We were told that we would probably have to wait a while to hear from CSAAC who was just contacted a couple of weeks ago, and they were already arranging for me to bring Rachel in for an evaluation with their psychologist 1 week following the phone call. So, after receiving the call from CSAAC, I called KKI and left a message -- I don't really remember what I said, but while still trying to sound like an adult, there was probably a significant amount of attitude in what was said. And, the worst part of it all is that I never really wanted to contact EITHER of these groups in the first place -- yet, here I am so angry and upset that KKI isn't getting back to me and CSAAC is responding so fast (no, there was no way for either organization to win).

So, we'll just say my coping skills have been non-existent this week. It felt like everything that was happening around me was part of a conspiracy to make me miserable. I had hurt my leg which prevented me from running after the kids on the one nice weather day we had (early in the week at least)....the weather was lousy....a field trip that we had all been looking forward to was cancelled....one day (the worst of day of the week) had no naps to speak of (and when a 29 month old only sleeps for an average of 8hrs/night, naps are really necessary)....4 year old spitting into his drawers (thinking I wouldn't find it)....biting from an overtired 2 year old....poor sleep by me....and constant fighting with everyone. Things really weren't all that bad....but because I have been in such a lousy mood and seeming to surround myself with nothing but self pity everything just seemed to add to it all.....

Today has been a better day. Rachel and Simon had their second gym class of the week, and unlike Tuesday, Rachel didn't have to be pulled out of the gym kicking and screaming because she wouldn't stop climbing on the parachute (still wouldn't stop climbing on it, but I was able to get through the activity in other ways). Simon had a lot of fun and actually volunteered to go FIRST on some of the demonstrations (like doing a straddle roll on the "cheese mat"). Rachel also participated in all the activities and was having lots of fun bouncing and throwing the ball at the end of the class, rather than just simply hoarding them all to herself. Then we went to a playground and met up with another family.....Daniel had a GREAT time playing with one of these other boys (with a periodic emotional moment or 2) and Rachel and Simon both stayed in the playground and were playing appropriately for OVER AN HOUR!!!!!!!

Finally, to come full circle, while we were out today, I received a call from KKI. I called them back after the twins fell asleep for their naps. They are looking to find a time in the schedule for both Rachel and Simon to be evaluated in a single visit (2 different evaluations by 2 different departments for 2 different kids) so we don't have to keep running back and forth. They estimate they will have a time for us within the next week and it will be in late August. It will require Kevin to come with us and probably for me to find someone to take Daniel (for the whole day). For some reason, this news isn't making upset the way the CSAAC phone call did -- just the opposite in fact -- which hopefully means I'm through this self-pity stage that has been plaguing me all week. I'm hoping that following these evaluations, we'll finally have some of the answers we want (or don't really want) and need in order to help ensure they are getting the best possible care and services.

Our Life and Making Decisions -- Dealing with Self Pity

.....well, it's time to get off my preaching posts and talk a bit as to what's going on in OUR lives.....mainly because I'm getting frustrated and need to get some stuff off my chest....in other words.....SELF PITY POST!

As I mentioned earlier, both Rachel and Simon are in this 3 day/week preschool run by our county's Infant and Toddler Program. They are both responding, but Rachel isn't doing quite as well as Simon, mainly because she's very "behavioral" and has to do things on HER terms. Therefore, it's the recommendation of her teachers that we also arrange for one-on-one ABA with her (applied behavior analysis). Their preschool does some ABA, but it's only a small portion of what they do whereas ABA in the home is far more intense. She was initially evaluated (well, observed) a couple of weeks ago by CSAAC.

Well, CSAAC called me this afternoon and we now have an evaluation scheduled for her to be seen by their psychologist next week. Of course, they will also be evaluating ME and I'll be showing up with her twin and her 4-year old brother in tow, so it will be an interesting experience. And, truth be told, I'm still not convinced this is the right thing for her. Her problem in the classroom is attending to the structure and doing what she is told. ABA is ALL ABOUT STRUCTURE!!!!!!! If she can't take it in small doses, how will she respond having no choices for upwards of 10 hours a week???????

I love my children. I think that's obvious. As the "mommy", I need to make decisions that will benefit all of them. So, I'm focusing on making the right choice for EACH Rachel and Simon. Then I have to make sure that whatever those decisions are won't interfere with Daniel's routine or life any more than necessary. Finally, I have to be able to live with it all. Right now, I'm not sure if ANY of these criteria are met.

Finally, we are STILL waiting to find out if Kennedy Krieger Institute will EVER want to evaluate the twins. I'm still not 100% sure I want to know, but having a cause would be helpful -- it would be nice to potentially eliminate any lingering thoughts of "What have I done to my babies?". I called them today and left a message asking for a time-table of when they will contact me to schedule an appointment.

OK -- here's my first self-pity post. I'm sure there will be others, but I can't believe I'm putting one in before my lectures are over.

Time for some nitty gritty (includes some facts)

It's been a few days since I've posted -- mainly because I have been trying to think of the best way to put this post out there, since it's quite controversial. I still may edit this once or twice as I find better ways of expressing myself, but this post as it stands definitely contains my views.

It's time for me to talk about all of the vaccine theories. I'm going to hold off on my comments on thimerosal for another post. But when I learned that the twins were on the spectrum, the first thing that came to my mind was "Is the MMR vaccine to blame?" (since this seems to be what EVERYONE talks about). I have both friends and family members who have commented to me during the previous year that they are considering NOT vaccinating their kids because of the fear of not knowing which children are "at risk" because, after all, it's common knowledge that vaccines cause autism, isn't it? The answer to that question is ABSOLUTELY NOT!!!!!!!!!!!!!!

The phrase "common knowledge" indicates that something is true. This is more a "trope" or a fallacy. There were some studies done in animal models that MIGHT have shown some relationship between immunizations and autism, and other small scale observation human studies. However, these studies are questionable (at best) with their methods. And on NUMEROUS occasions these results have not been supported by larger scale studies that can be generalized to the public (see previous post). As I've mentioned elsewhere, results must be REPRODUCIBLE.

There are two key reasons why I believe people blame vaccines for the onset of autism:

1. People of power (media, politicians, etc.) have jumped on this. It shows a "bad guy" in the pharmaceutical companies and it makes a great story. Many of these groups aren't familiar with medical research or with how studies are conducted. They see something across the news wire and want to be the first to report it. And, as we've learned in 1960 with televised debates between Richard Nixon and John F. Kennedy, people who know how to present themselves on television have a distinct advantage over those who don't possess that talent. Scientists and other researchers are not exactly known for their stage presence. So, even when they stand side by side debating this issue with a career politician or television journalist, the scientific information and explanations can easily be lost.

For the record, I'm not saying that anyone is maliciously misleading the public. We are all passionate about our children and when there is information to be had, the people in a position to inform us of this want to make sure that we, as parents, have the information we need to make informed decisions. However, these individuals are not necessarily in a position to critique these studies in any way guaranteeing that there is full understanding by themselves, and then consequently, to the public.

2. Timing. To the average person, the earliest signs of autism tend to appear when our kids are around 18 months to 2 years of age. This timing coincides with the administration of several vaccines, including the MMR (measles, mumps, rubella). And, to make it more complicated, one of the common side effects of this vaccine, is a fever within 48 hours of its administration. Many parents have claimed that their child just started to vanish after this vaccine was administered. However, when home videos have been reviewed by experts in child development and neurology, they usually see signs of autism as early as 6-10 months of age. Because of the developmental milestones associated with this age, this is just when autism is first recognized in many of these cases.

I just want to remind everyone that just because we see information "out there" doesn't mean we can't just assume that it's correct. This includes information we find in the news, on the internet, or talking to our friends. We need to go back to the source and interview people who understand what these reports are really saying (e.g. a physician or someone in the medical field who is capable of understanding medical research data). Once again, I'm not telling you to blindly follow what someone is telling you (including your doctors) -- I just want to see people becoming informed before making hasty judgments as to what may be happening here (or in any other medical area) and jumping to erroneous conclusions.

All right -- that's enough for now.....lecture is over (for now).......

A Brief Lesson.....

My education background is as an epidemiologist, and even though I've never truly used this training professionally (exactly), it is definitely useful when trying to understand all of the information on a medical condition (autism in this case). Using this background I am in a position to read a study and recognize not only the study's results but also determine its strengths and weaknesses.

In order to understand what will probably be my next several posts, I feel it's important to briefly educate you in some basic statistics. After all, almost all research is presented using statistics and we all have heard that statisticians can make the numbers say anything they want it to. That is true, in many respects, but that is done at great costs.

Because the purpose of statistics in research is to generalize findings from a sample to the general population, the people conducting this research have to be confident that their results warrant making such an assumption. Therefore, statisticians consider 2 types of errors -- the "alpha" error and the "beta" error (yeah, real original names). Regardless of how well a study is conducted and how sound the findings, both of these errors will always exist and they are always reported in the study's results. They are also often considered in both the study design and the discussion sections of the research article since this is where all weaknesses can be explained away.

The alpha error has to do with how confident the researchers are that the study results are accurate and not due to "outliers" (unusual cases). Whenever a sample population is selected, it's always possible to find a group of individuals who really can't be generalized to the population at large. Usually in these studies there are maybe a couple of participants for whom this is true, but most of the sample should be representative of the general population, allowing the researchers to report those results. Using the alpha error, a degree of confidence is reported which is basically calculated as (1 - [alpha error]). This is often presented using a "confidence interval" to show how likely the true pinpointed result of the statistical test(s) actually lie. When reading these results, assuming the alpha error is 5%, readers can generalize that the researchers are 95% confident that their results are accurate. The smaller the alpha error, the higher the confidence.

The beta error has to do with how "powerful" the study is, or how "reproducible" it is. In other words, if 10 different studies with the same design were conducted the same conclusions should be reached 10 times. The higher the power, the more reproducible that study is. This is reported as (1 - [beta error]) and a standard power value is 90%. One of the best ways of increasing the power of the study is by increasing the study's sample size.

So, hopefully, this will give everyone a basis for understanding much of what is coming next. I know I'm posting a lot right now, but I'm still trying to get myself caught up a bit.....

Trying to Digest All the Information Out There

Many parents of a child with autism, after getting over the initial shock, want to learn as much as they can in order to know how best they can help their child(ren). I am no exception. And with the numerous resources available on the internet, research is not difficult for many of us to do. However, just because information is available on the internet doesn't mean that information is accurate. That is one of the reasons I decided to start this blog.

As I mention in my basic blog description, I am not intending to report what is real and what is presumed or suspected, but I will tell you what I found, what decisions I've made and why. Thus far, I have looked at information concerning vaccines causing autism, theories around mercury poisoning and thimerosal, and am about to consider the usefulness and benefits/detriments of GF/CF diets.

But to put it mildly, there is a lot of information out there, and the information comes from lots of different sources -- from the scientific community, the media, many advocacy groups as well as other places. This large amount of information can be very intimidating. Some of the information can easily be read as "This is what causes autism and if you don't follow these guidelines you are a terrible parent", which is and should be a frightening thought to all of us. Many of us have wondered on at least one occassion "What have I done to cause this to happen to my child?". It is easy to get lost in despair and hopelessness. When we start to feel this way, it is important for us as parents to recognize that we are advocates for our own children and knowledge is the source of our power.

Please continue to read this blog to learn how and why we have chosen the options we have.

Blog and Personal Introduction

I'm new to blogging, so I hope whoever reads this will put up with my poor blogging skills. Hopefully, over time, these will improve. But, for now, this is me.

My name is Ilene and I'm a stay-at-home mother to 3 children. We live in Germantown, MD with my husband (and the kids' Dad), Kevin, and we have been married for nearly 11 years. Daniel was 4 in April and I have girl/boy twins (Rachel and Simon) born on January 12, 2007.

When the twins were approximately 26 months old, we were told that they were both on the autism spectrum. This was not too surprising to me regarding Simon, but when I learned Rachel was "on the spectrum" as well, I felt all the air leave my lungs and I had to take a few minutes to gather myself. Looking back, I'm not exactly sure WHY this information was so surprising -- she has a lot of the same stereotypical behaviors of autism, but, as parents, we are often blinded to problems our children may have, especially if they fall outside the expected. In this case, since autism is considerably more common in boys than girls, I didn't even think about the possibility that my DAUGHTER could be directly affected. One of the many signs that sometimes, getting an outsider's perspective can help in all things.

3 months have passed since learning of our entry to "the autism world" (as our pediatrician calls it) and we have been working with both of them to maximize their potential in hopes of preparing them to be fully mainstreamed by the time they begin kindergarten. They were diagnosed early, which is a VERY good thing -- early interventions are always best. Right now they are enrolled in our local county school's Infant and Toddler program, and are currently in a preschool which, when they are fully integrated, will be 3 days a week for nearly 2 hours each session. This preschool includes OT, Speech Therapy, and ABA specifically, and is the first real introduction of "structure" for them.

Simon is responding remarkably well to the classroom. I'm not saying that he's "fine" now, but he is becoming more willing to try new things (drank from a cup this week for the first time) and, despite still being "nonverbal", is parrotting what people say to him. Rachel is also making good progress, but in very different ways. She is becoming more verbal -- new words appear every day, in context, usually related to animals or nature (for some reason).

We are also in the process of trying to get more intense 1-on-1 ABA for Rachel. She is what the school refers to as "behavioral" and is having far more issues complying to the requirements in the classroom. We are fortunate that we live near CSAAC (Community Services for Autistic Adults and Children [www.csaac.org]) and the county system has a relationship with them to provide in-home ABA for children in addition to the classroom, assuming the child is deemed eligible and is felt to be a good candidate. She was evaluated by them this week and we have now submitted the paperwork asking that she receive up to 10 hours of in-home ABA. Time will tell if she will be "accepted". I am hopeful that the combination of the classroom and the additional in-home work will help her.

So, this blog will, over time, follow our experiences related to the autism spectrum. What works for them and what doesn't and how we, as a family of 5, cope with it all.