Tuesday, March 30, 2010

Am I NUTS?!?!?!?!?!?

Here I am, a woman in my late 30s raising 3 small children and here I am considering adopting a dog. Not just considering -- PLANNING on it. What am I, NUTS?!?!?!?!?!?!?!

Well, the answer to that has to be "Yes", but not exactly in a derogatory way. I've wanted a dog for much of my life, but have always had reasons to NOT get one. Now that I'm here, with a family, it's time for that plan to come to fruition. We've been talking about it off and on for probably close to a year now, but we keep coming up with reasons to not adopt a pet, the biggest one being can I handle the additional responsibility. Then we've had to consider potential allergy situations and fears (Kevin has a rather brutal history with a dog when he was only 5 years old that has created a lifelong fear of german shepherds).

We're talking about adding a member to our family. Everyone needs to LOVE this dog. So, we're proceeding slowly. I went to petfinder.com and sought out young labrador retriever rescue dogs and have applied to see several dogs to date. We now seem to have found a good match (on paper). So, the rescue organization is coming here for a home visit on Thursday evening to see if our home is suited for this dog and then we can arrange to meet her.

I'm still trying to figure out the best way to proceed. If it were just me, it would be simple -- there would be no one else that I'd have to worry about. Any given dog would would work or not work, and I would work with the rescue organization to find the dog that works for me. But I have 4 other people to consider. And 2 of those are VERY unpredictable -- what will work today may or may not work tomorrow. We've taken a couple of trips to PetSmart down the street from us, hoping to find some dogs on leashes and exposing all 3 kids to them to see how they react. That has been relatively successful. I've also taken them to the groomers window to watch some of the dogs be groomed. They're all fascinated by what they see. What will happen when we take them to meet the dog that we're planning on bringing home? Well, time will tell....

But hopefully within the next couple of weeks, we'll meet our new dog and will be preparing to bring her home.....

Friday, March 26, 2010

An Amusing Nightly Tale

My household, let's face it, is a bit crazy. With 2 "adults", 3 kids all younger than kindergarten, and now we're talking about adding a dog to the mix (I'll go into that in another post at some other time), that's pretty much to be expected. But crazy isn't bad. For us, it's normal.

When life is crazy, there are always amusing moments. And some of those happen on a nearly daily basis. I want to describe one.....

Every night, we have a set bedtime routine that we follow. It may not be the wisest activity set, but it works for us. It starts with dinnertime. After dinner we head upstairs. The kids run around and play in the bedrooms until about 6:45, when it's time to really get down to business. Bathtime and getting into PJs follow. We turn on the TV and watch music-based shows, ending with The Wiggles, and at around 7:45, we head into the twins' room for 3 short books. Then Daniel leaves the room, Kevin and I say our "Good Night"s to the two of them, Kevin leaves, and I sing 2 songs (the same ones every night). I say my final "Goodnight"s and climb over the gate blocking their door and head into Daniel's room for the completion of HIS bedtime routine. Rachel and Simon jump out of their bed (immediately), and head for the closet. We can hear the door open and slam shut behind them.

After we finish our bedtime routine with Daniel, I head downstairs, but I peek into the twins' room to be sure they're in bed (which, of course, they're not). I say in a (relatively) loud voice, "Rachel, Simon, BED!!" All of a sudden (and note, this happens ALMOST EVERY NIGHT), the closet door swings open with such force I'm amazed it doesn't go flying, and out ZOOMS Rachel. She's shouting "And go to sleep!" (which I will repeat). I call out, "You too, Simon!". Simon comes meandering out of the closet and repeats "And go to sleep!" (again, I repeat). They both jump into their respective beds and act sweet and innocent. By the time I get to the stairs (note, the stairs are RIGHT OUTSIDE their bedroom), Simon is already out of bed, and he's climbing into Rachel's bed (but heads over to close the closet door first). By the time Kevin comes downstairs about 5 minutes later, he will often find at least one of them asleep (both are usually asleep within 15 minutes of my final encounter with them) and they are cuddled together until I separate them before going to bed about 2 hours later.

It's funny -- they started sharing a bed about a week before Halloween, and have fallen asleep like that nearly every night since. But they've NEVER done this in Simon's bed -- it's either Rachel's bed or the floor.

I wouldn't say the two of them are growing apart, but they do spend most of their time apart, but they still have that connection, and for now, this seems to be the way they can keep it alive. I don't know how much longer I'll be able to keep them in the same room, but I still enjoy these moments and hope that this is a sign that, even though they are in different programs that take much of their day, their twin connection is still there and still strong. It may not be visible to most the rest of the time, but it's definitely present at night. And, when Simon wakes during the night, which happens more often than not, he always climbs back into Rachel's bed before falling back to sleep. They still need that contact with each other. THIS can't last forever, but I hope the connection will always be there.

Monday, March 22, 2010

Trying to Organize my Thoughts.......

I know I've talked about this before, but I feel I need to get it off my chest again.

I see all the improvements in Simon. He's doing so well in school. He's becoming such a happy little boy (except for when he's miserable). He's become a lot more affectionate. He enjoys participating in "circle time" at school. But I also see how Rachel is doing. She's FLOURISHING!!!!! She has been having fewer and fewer negative behaviors. It's easy to forget at times that she has the same diagnosis as her brother.

These two are twins. They are twins with the same diagnosis. Yet there is almost NOTHING about them that are the same. What works for one doesn't work for the other. And right now, Simon constantly seems to be in a state of flux.

He started at school on January 12. At that point, the teacher in the classroom to which he was assigned had recently resigned due to poor health. He had a (semi)permanent substitute teacher so the consistency was there, and since he hadn't been there before, this didn't cause him any unusual disturbance. Then, in mid-February, a new teacher was hired and she begun working in Simon's class. He immediately seemed to bond with her. Her notes home in his notebook were written by someone who really seemed to care about him. And when I went to observe the class last week, he really enjoyed working with her. Well, I received a phone call today from the school's administrator. Today, this teacher was "let go". The substitute that was there when Simon began will be there again when he arrives at school tomorrow and will be there until a new teacher is, once again, found.

I'm terrified of what this is going to do to him. Simon needs stability. Will he regress when his favorite teacher is no longer there? How will he react when he shows up tomorrow to see a former teacher waiting for him? Will it confuse him or will he take this in stride? He's not capable of asking where his favorite teacher is. Will this be a thought in his mind, or is he not yet capable of forming such a question?

I guess we'll see what happens. When I was talking to the administrator, she did tell me that if I had any questions or issues, I should feel free to contact her. I did mention at the time that I did feel that Simon and his teacher had bonded and I was concerned about how her absence would affect him. If I'm seeing negative consequences, I will let her know. But will that be too late?

Tuesday, March 16, 2010

Another Visit to Simon's School

On Monday, I went to visit Simon at school for an hour or so. It was a really nice visit. I was able to get there early enough that I was able to see a lot of what they do during the day. And now that he's fully acclimated to the program, I really got to see what he's up to on most days. Most importantly, I got to see how he gets along with his new teacher who started a couple of weeks ago.

Monday is a half-day at MPAC -- school is in session from 9-12 (as opposed to 9-2 for Tues-Fri). They spend some time playing in the gym, they have a circle time, and they have an early lunch. By the time that's all done, there's just a little bit of time for free play and then it's time for the kids to go home. I got to watch the gym time and the circle time. Since I didn't pack a lunch for Simon that day (I was planning on taking him out to lunch at the mall so we can get his hair cut [ended up skipping the haircut, but we did eat lunch at the mall]), he washed his hands with the class and then it was time for me to take him "home".

The most amazing thing happened though, during circle time. At the beginning of the circle, his teacher asked the kids (I don't think the question was directly specifically at Simon, but I may be mistaken on that one) what day of the week it was. She had already pulled down the sign reading "Monday". Simon immediately announced "MONDAY"!!!! I heard him do this. I was floored. I didn't think I had heard correctly. I think his teacher felt the same way. She had him repeat it a couple of times. When she and I were talking before Simon and I left, she asked me if I thought he had actually READ the sign. I don't think so, but he does recognize his letters and he does know the days of the week, even though I've never heard him recite them.

There are some days that I really wish I could just crawl around in that brain of his and figure out exactly what he knows and what he doesn't. What else is trapped up there waiting to come out when it's least expected?

Friday, March 12, 2010

What A Year!!!!!!!

Today it has been 1 year since we were initially informed that both Rachel and Simon were on the spectrum. I both remember every detail of that doctor's visit and feel that it went by in a blur. It was me and the kids -- Kevin was at work, Daniel was at nursery school. It was after I went in to see the developmental pediatrician that she informed me that I should have brought someone else with me to watch one of the twins while we discussed the other. Doing that never even occurred to me. I always took the two of them with me wherever I went, and dealt with the insanity that was (and is) the two of them.

I remember sitting there and filling out the M-CHAT on Simon (I had already done that for Rachel online). I previously had an initial meeting with MCITP where the term "autism" was brought up (but not really discussed) and in MY mind, Simon was the one that was believed to be autistic -- Rachel, well, if we were evaluating Simon for autism, it wouldn't hurt to consider whether she needed that level of service -- but in my mind she was speech delayed and nothing more.

The doctor reviewed the information I provided to her for both of them in the M-CHAT and through other measures. She observed their behaviors for a while during the interview. Then she both gently and bluntly told me that they were both on the spectrum.

I was just in disbelief. Simon -- yeah -- I saw it (although that didn't make hearing it any easier). He would flap. He would "stim" (though, at the time, I had NO IDEA what that meant). He would throw tantrums that were totally out of control (more than what would be expected from a 2 year old). He NEEDED a routine (again, more so than would be expected for your typical 2 year old). These are the behaviors that I would think of when I thought of "autism". Rachel -- I saw NONE of these behaviors. At least I thought I saw none of these behaviors. But there were others in her -- perhaps they were just a bit more subtle. Or maybe it was because I fell for the trends that autism affects more boys than girls -- therefore, it couldn't affect HER. But definitely a sign that I had no idea what I was thinking of when it came to the term "autism" and that I was in complete denial about the severity of her issues.

This year has been about education for me, and trying to determine how best to help these two kids, for lack of a better word, "normalize" and be "functional" in any setting. We needed them to develop an interest in communication. We needed them to be able to function in a group setting. We needed them to be able to see and hear and touch and taste and smell things without throwing a fit (or, in Simon's case, threatening to vomit). And there was a laundry list of other things that we needed them to learn to do that neurotypical kids seem to do naturally. All of these things are still a work in progress.

So we are 1 year into a very long journey. We still have a long way to go. The end is no where in sight. I'm not even sure where the "end" of this really is, and therefore, if it's attainable at all. But one never knows what the future holds. Despite what I may complain about in this journal, we have made remarkable progress in the last 365 days. Now we are into our 2nd 365 days, and who knows what this next year will bring.

Wednesday, March 10, 2010

Trying Something

When we first learned that Rachel and Simon were on the spectrum, we packed up the car and drove to Disney World 2 days later. While we were there, we attended several shows in the parks and most of them were disastrous for Simon. He just couldn't handle it all. We got used to it by the end of the week and were finally able to get him to sit through a show on one of the last days, but that required him to be sitting in my lap and being coaxed throughout the show. It also helped that it was a musical, and music is and always has been very soothing to him. But we hadn't exposed him to shows after that experience. That is, until today.

Today, I (on my own) took Rachel and Simon to the Circus of the Senses, put on by the Big Apple Circus. Getting there was it's own Comedy of Errors as I managed to get lost and was already running late. When we finally arrived, we parked the car and I put the harnesses (let's call them what they really are -- LEASHES) on the two of them and we headed over to the bus to take us to the Big Top. They're used to buses, so this wasn't much of a challenge. So far so good, right?

Well, we got inside and were taken to our seats. That's when things started to go wrong. Rachel quickly got bored waiting for the show to start. Simon wanted the "harness" OFF. Rachel took her lead from Simon and tried to pull her's off too. I pulled out the container of goldfish, and that got them to settle down a little bit until the show started. Then the lights went down.

Rachel was awed by what she was seeing. Simon was, well, not! He started to scream. He started to kick. He was doing everything in his power to run away. I picked him up and put him on my lap and made attempts to soothe him. Rachel tried to climb over the seats to get a better view of the clowns. Simon screamed some more. I turned his head into my shoulder and quietly sung to him. Rachel stretched out the harness to its fullest trying to get it off. I pulled her back. I had her stand on the chair next to me so she could get a better view. Then I brought my attention back to Simon, who seemed to show signs of settling down. When Simon realized he had my full attention, the screaming resumed. The clowns finished and the horses came out. Rachel was enthralled for a little while, but they didn't hold her attention as well as the clowns. Simon wanted OUT.

We stuck it out for another scene or 2, then I packed up the goldfish, threw the backpack over my shoulder, grabbed the 3 jackets, got a good hold of those stupid leashes and dragged them and everything else outside. Someone saw my struggle and carried the backpack for me. Once we were outside, I took the harnesses off long enough to put on their jackets (and then struggled to get them back on again) and we headed down to the buses to bring us back to the car. This time, neither of them WANTED to get on the bus. They wanted to go back into the Big Top. But we got on and went back to the car. I forced them into their car seats and we headed back to Maryland.

On the way back, I stopped at Burger King and got some onion rings and a shake. They may not be on my diet, but I needed the comfort food.

I really want to take them to see the Laurie Berkner Band concert in May up in Baltimore. I contacted Simon's school to ask for their advice as to how to prepare him (we have about 6 weeks) and on the phone we brainstormed a little bit. They definitely feel that we can make it all right for Simon, especially since he LOVES her music and with all the videos available on YouTube hopefully he'll be ready for the experience. I hope so because I'm planning on getting the tickets tomorrow afternoon.

Monday, March 8, 2010

Things continue on....

...the last couple of weeks have seen a lot of sadness in our extended family and I haven't been comfortable posting about what's been happening in our own household, but now that everything has settled down, it's time to continue with our story.

The last couple of weeks have seen a lot of activity, mostly with Rachel.

I finally had time to visit her at school for more than a few minutes and really see what her program is like. Unfortunately, I had to miss "circle time" because they do that first thing in the morning, and since I had to drive Daniel to school, I wasn't able to get there until well after it was over, but I was with her for approximately 2 hours, watching her go through the ABA trials and work with the SLP for about 30 minutes. I had never actually watched her when she was working with CSAAC because I always had Simon with me so I really didn't fully know how the trials worked. It was very interesting. They have Rachel do 3-5 tasks (currently [I understand this increases over time]) and each is completely different from the others (showed her a picture to label, moo like a cow, brush a doll's hair was one sequence I witnessed) and then she is given a reward (in this case, she got to watch a Wiggles DVD for a couple of minutes while the next set of tasks were set up). She was so happy going through these things and was very responsive to her para-educator. It's strange how well she responds to such a rigid and no-nonsense routine when she herself is so rigid and unwilling to bend to the wills of others. But, that's what works. And I certainly can't argue with the success we've seen with Rachel and ABA-based programs.

I am visiting Simon's school again next week and getting a chance to see how he works with his new teacher. The teacher he was assigned to before he started, resigned for medical reasons before he began and so he's been working with a qualified substitute teacher until recently. He was very happy with things as they were and, now that they've hired this new teacher, he still seems just fine with the situation. I met her briefly last week when I had to pick Simon up from school and she seemed very nice, but I look forward to seeing how she interacts with the kids in her class. And, I have to admit, I do LIKE to visit the kids' schools and watch their progress. The day-to-day "kid-stuff" has been so much of my life for the last couple of years (since I've left the workforce) I'm not sure I'm ready to fully let that go (but I love the opportunities to have a cup of coffee with a friend without having the kids hanging on or causing problems all around me).

The other news this week is that we are planning on attending "Circus of the Senses" on Wednesday. It has been nearly a year since we learned that Rachel and Simon were both on the spectrum and almost immediately after learning this, we put them in the car and drove down to Walt Disney World (the vacation had been planned months before). We didn't know ANYTHING about autism and I (at least) was in complete denial that my children had issues as severe as "autism" and none of our plans changed. We took the kids to several shows and we'll just say that Simon didn't do well at any of them (we were able to keep Simon in the auditorium for ONE of the shows we tried, and that was with a LOT of coaxing). This is the first time since then that we are exposing them to any type of live show. Circus of the Senses is designed for children with special needs, but it will still be interesting to see where we are now versus where we were a year ago. And, if this goes well, I am considering taking them to see the Laurie Berkner Band when they travel to Baltimore in May (all of my kids LOVE her music).

I guess you can say we have embraced our new lives here....