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 reports......it 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....

...it's amazing how things change over time....in 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.....