Wednesday, August 31, 2011

Apologies and Explanations

I want to apologize for last night's post. I was, to put it mildly, frustrated and a bit disheartened. Things have been going so well with Rachel (with the exception of the ADHD issues) for such a long time that, when things surface, it always seems to be a slap in the face. And to top it off, I was getting near the end of my stint as a single parent around here (I still have no clue how the many single parents manage). This was my first true "venting" post in a long time.

But I think the problem is that, as I mentioned, it's always been difficult for me to cope with Rachel being "Autistic". I never seemed to have this trouble with Simon. But I refused to see it for a long time -- when the symptoms were present but nothing was being addressed, when we first requested assistance, when people started telling me she was on the spectrum, even when we started seeing the drastic improvements when we started initiating the ABA. That was probably when it started sinking in -- if she wasn't autistic, it wouldn't have been so successful (well, it would be successful, but it wouldn't be the only thing that we were seeing such success). Even now, I often seem to forget about the "Autism" and focus on the ADHD. It's still the "A-word", but perhaps it's easier for me to face.

But she IS autistic. I know this, and have for quite some time now. We have these moments where it just comes and knocks me back to reality. And every time it happens, it really feels like we've taken so many steps back. It's a reminder of how far behind she really is, despite everything we do. It's a reminder that she will probably never be what most people consider "normal". I mean, what "normal" 4.5 year old takes their poop and smears it on themselves, the wall, the bed, the kitchen table, etc.? A "normal" child doesn't do this at this age. An "autistic" child does. And her diagnosis is "Classic Autism, Severe". Even though she has learned to talk; even though she's now saying special things like "I Love You!"; even though she is extremely intelligent and an interesting individual who I love very very much, she still has "autism".

Autism isn't something that is "cured", despite what people like Jenny McCarthy say. Autism isn't something that will ever leave. It's a part of who my younger children are. What I can hope for is that they learn to control these impulses and can learn to live functional lives. Hopefully they'll be able to live on their own. Hopefully, they'll be able to have families of their own. But today, I can't know if that is what the future holds in store for them. And times like this week, it's just a harsh reminder of these truths.

Tuesday, August 30, 2011

Potty Training Woes

When I decided to sit down and write a post entitled "Potty Training Woes", I had envisioned it would mean several different things. Constantly laundering Size 6 briefs. Fingers wrinkled beyond recognition from scrubbing articles of clothing. Wet spots all over the floor. Frustration of trying to get this kid to finally put the pieces together. Never in my wildest dreams did I expect to be writing about the content of this post.

First of all, 15 months after considering a child fully potty trained, I never imagined that we'd be struggling with this and Rachel. Yeah, we've been seeing more frequent accidents from her (and urine accidents which were always EXTREMELY rare). But we're seeing something new. Something maddening. Disgusting. Appalling. And, because she's potty trained, I'm really not sure what I can do about it.

We're talking about the "S" word. What could that possibly be? Well, I'll tell you. SMEARING. For the last few days, she's been releasing a small amount of BM and making sure she can get her hands in it. If there's enough there, she will start writing on the walls. She's done this in her room at night. She's done this in the basement where we keep most (if not all) of her toys. She's even done this at the kitchen table when my back is turned for 30 seconds. No place is safe.

The only solution I know of that has seen success is something called a "Wonder Jumper", designed and available through this website (I-Kids Fashion David Cavaliere). However, because she's potty trained, we need to be able to get her undressed to use the toilet as needed, which makes this an inappropriate solution to our current problem. But since she has been finding so much pleasure in her new activity, she is intentionally releasing just enough. When she does this, she also urinates a bit. Today alone, she has been through 5 pairs of underwear due to these "accidents". But she definitely has the control and the will. There is clear and present INTENT at work here. She gets the reaction she seeks in my frustration and anger. So, I try not to show it. But how can I not? So, all I've managed to do is make the problem worse.

Talk about a HUGE regression. And, of course this happens this week....when school is starting and my patience is completely exhausted. While Kevin is out of town for a few days for a business trip. When all I want to do is ball up somewhere and hibernate to recover from this insane and rather unpleasant summer. I hate the fact that I am preparing to start the year with a lengthy note to her new teacher explaining this new behavior, just as we are trying to prove that she can function in a school for typical children as well as those with special needs, rather than sending her to a school where there are no possibilities of integration. I'm just hoping this is a TRUE regression and, once we get back into the routine of school and things have a chance to settle down, we will see all of these behaviors completely disappear.

But the truth is, I'm scared that this may have something to do with the ADHD treatment. May that have caused her to regress like this? She doesn't do anything like this while the drug is in her system, but once it works its way out, these behaviors seem to surface. We are trying to get her impulses under control with as little intervention as possible. Do we need to stop all together? Or do we need to medicate her further? Or is this purely a behavior that we must address?

I really just want run and hide from the world right about now.

(but on the plus side, the boys are both having a great first week of school [based on 2 days])

Saturday, August 27, 2011

School is Coming

This is something that parents look forward to, probably more than most things during the year. This is also something that children look towards, some with anticipation, some with dread as it is a clear milestone for them. Return of routine. Return of strict structure. Return of goals. And return of worry.

School is where we see the most progress in both Rachel and Simon. This is where they learn how to be with their peers and where they assess their ability to cope in various settings. They introduce as many settings as possible to teach them to cope. And they use these experiences to determine placements. This year, at their IEP meetings in the first couple of months of school, we will be targeting their kindergarten placement. It will be too early in the school year to make assignments, but I have goals for each of them and they are both attainable, if everything goes well. But we have to work. I'm gearing myself up for a VERY busy year. It's quite worrisome, but I know everything will work out fine.

Yesterday was open house. Yup, 3 of them. Simon's was at 11, Rachel's at 2 and Daniel's at 4. There were issues at all 3. When we went to Simon, I had both boys (Rachel was at her last day of gymnastics camp at The Little Gym (which she LOVED). We pulled into the parking lot and Simon threw a FIT. He did NOT want to go. He didn't want to get out of his seat, even though I had been telling him that we were going and he was going to see his teacher (Ms. Evelyn) who, although she has never been his teacher for school before (but has been for camp), he is familiar with her since he started the program. But no...."NO SCHOOL!" he kept shouting. Well, I suppose I should be happy that he recognized we were at "school" and that he was expressing his opinions so effectively. But, starting Monday, he'll be back there. I eventually got him inside, promised I wasn't leaving and he did have fun once he started recognizing his friends, teacher, and, most importantly, books. We were there for nearly an hour and he did eventually relax and have fun. The bus will come to pick him up on Monday and we may have some issues there, but I hope his anticipation will outrank his fears and trepidations.

After picking up Rachel from camp, we headed over to HER open house. We got there pretty much right on time, along with the rest of her school. And, unlike Simon's school, this is a full elementary school (Simon's school has a total of 12 students currently) which means that we were facing a lot of kids, parents, teachers, would be overwhelming to anyone, much less a 4.5 year old girl with autism. Daniel was excited to be there....another place for him to explore. Simon knew it wasn't HIS school so he too was fine. Rachel was SCARED. She tried to hide behind me. When the principal got down on his knee to say "Hello" to her, she just clung to me even tighter. He recognized the need to back off and addressed her later in her own classroom rather than in the crowded entryway. She has been asking about "Ms. Suzanne" since summer school has ended, even though she will no longer be in her classroom. As we were going down the hallway, she suddenly seemed to understand that her teacher was changing and decided to give "Ms. Suzanne" the cold shoulder (how DARE you switch me to someone else's class). But again, as she recognized where she was and all her favorite things were still there, she seemed to settle into it all.

I had a lengthy conversation with her new teacher about what I was hoping to see about her kindergarten placement and how the Focalin should really help with her attention issues that we were seeing last year. We are still waiting to see whether she will be joining the morning or afternoon pre-K, but once we know that, we will be able to determine if we need to start administering the medication before she leaves for school or during lunchtime. They intend to wait a couple of weeks before making that determination, and I will allow that to happen. But again, since my goals for her are aggressive, I can't allow myself to become complacent.

Then we were waiting for Kevin to come home so I could take Daniel to HIS open house. After all, he had been to the other 2 (and had a blast since their classrooms are full of toys). By the time he came home and we walked down the hill, the Open House at his school was over. We were able to figure out who his teacher was, find the classroom and review the class roster (only 2 kids from his class last year are in his class this year, but fortunately, one of them is someone he considers a friend) and none of the other kids he talked about last year are in his class. But we never got to meet the teacher. So, on Monday, Daniel will get to meet his teacher for the first time. He has actual DESKS this year, which is a change. But what was his impression of the classroom? BORING!!!!! I tried to explain to him that he (in first grade [and a typical first grade classroom]) wasn't going to find a room full of toys like his brother and sister, who were in pre-K. But I think he's a little jealous.

But the boys both go back to school on Monday. Rachel starts on 9/6. Our extracurricular activities are also starting again these next couple of weeks. Our lives are about to go back to being a series of routines. Everything we do will be based on schedules, because that's just the way we are. And I think everyone here will be happy about it!!!!!

Tuesday, August 23, 2011

Vacation In Connecticut

Every summer (well, for the last 4 summers, at least), the kids and I make a trip to Connecticut to spend time with family. It's always been a bit strange because Kevin doesn't come with us and we are with his family for most of the trip, but it always seems to work and the kids always have a great time. And, as the kids continue to grow, we are doing more and more things with them.

One of our recent discoveries there is the Children's Museum of Southeastern Connecticut in Niantic, CT (approximately a 5 minute drive from my in-laws' home). We sometimes sign Daniel up for a class that they are hosting and we always go and bring the kids to play. They have their favorite exhibits, including a real submarine for them to explore. They have water tables, sand, trains, magnetic blocks.....a kid's DREAM come true. We had a free pass to use by the Monday we were visiting, so we just decided to show up (in the middle of a HEAVY downpour in a summer beach town). It was SO crowded. I wouldn't be surprised if there were over 200 kids there, and at least that many parents or grandparents. It was so hard to keep track of our kids -- it was not only me and my kids, but my mother-in-law, sister-in-law, and 2 nephews (12 and 3 years old). The 12 year old was chasing after Rachel as she couldn't stay with any activity and overall I just couldn't wait to get out of there. Then, when we got back to my mother-in-law's house, we looked through the brochures and we saw something that changed my views of this museum forever......a monthly AUTISM FAMILY NIGHT!!!!!!!!

My mother-in-law IMMEDIATELY called the museum to see if there was any available space that Friday night (the next scheduled event). They had space so we signed up Rachel and Simon. I was going to go with them and we decided that the 12 year old would come as well. Daniel heard about this and decided he wanted to go as well, so my father-in-law decided to come as well (so that we'd have one "adult" with each of my kids). Friday night came, and we headed out. After our experience on Monday, I was really worried about what was going to happen. How many kids would be there? Would there be adequate supervision? Would the kids all be having simultaneous meltdowns?

It was the most AMAZING museum experience I have ever had. All 3 of my children had a WONDERFUL time. They had at least one paraeducator for every child that was present. They were working to make sure that not only did the children have fun, but they had the opportunity to LEARN from the experience. Most of the kids there were quite young (I would guess 6 and under), with 1 exception. And I didn't see anyone having a bad experience. I spoke with the director and asked if this was an ongoing thing or if it would be ending soon. She told me that they have a grant through July 1, 2012 that allowed them to do this event monthly and they were going to apply for a second grant to have another monthly event to provide respite care for these individuals.

Now we know how best to attend the Children's Museum of Southeastern Connecticut, at least for our family. I hope they continue to have these events -- it is a great experience and it allows these kids to experience a wonderfully designed children's museum without the insanity that would typically be present in such a place.

Photobucket Photobucket Photobucket Photobucket Photobucket
Rachel was just EVERYWHERE!!!!! She had SO much fun!!!!!!

Photobucket Photobucket Photobucket
Simon also had a lot of fun, but he REALLY loved the sand!!!!!!

Photobucket Photobucket
Daniel had a lot of fun too!!!!!

Photobucket Photobucket
But everyone loved to play with the spinning pennies!!!!!!

And, one more thing to share from this trip.....Rachel has become a true performer. I've posted at least one other link of her showing off her singing talents. Her love of the Laurie Berkner Band is never ending, and she is LOVING the band's new DVD, Party Day. One of the songs on this DVD is "Good Night". So, she would like to say Goodnight to all of my readers.

Goodnight from Rachel and from her Mom!!!!!

Thursday, August 18, 2011

It's Vacation Time

Well, it's been about a week since we left our home in Maryland. We spent a night with my parents and then headed to my in-laws for a week-long stay. Most of this stay, it's just me and the kids. Well, sorta.....Daniel stayed with my parents for a few days before coming to see his "Other Grandma and Grandpa".

This trip is always "interesting". It's very strange staying with my in-laws without my husband. They are definitely welcoming and don't do anything to make me feel uncomfortable, but it always feels like there is that piece missing. But I have to admit, as this is the 4th time doing this, we keep coming back for more. And I've become closer to my in-laws than I had previously believed possible. But it's still strange.

This year, it seems especially so. We are still working out the details of medicating Rachel. Simon keeps coming up with new behaviors. And Rachel, well, we still don't know quite what's going on with her and her exploration of empathy as we like to think of it. The older cousins are getting older and aren't interested in playing with their baby cousin, Daniel, as much anymore, as much as Daniel really wants to play with them. Daniel is spending more and more time here with his younger cousin (who is about a year younger than Rachel and Simon). He's enjoying the time with him -- in fact, this year he was specifically looking forward to playing with him, but I can still see the disappointment in his face that the big boys aren't interested in the same things as he is, at least in such a way that he can clearly recognize.

But it's also harder seeing my younger nephew who, like I said is a year younger than my twins, and see where he is and what he can do compared with them. Until now, he was behind them in most respects, as one would expect. But you call him and he will come. You ask him to do something, and he does it. You see what you are supposed to see in a typical 3 year old. Then there's Rachel and Simon. I have to call them 3 or 4 times before they acknowledge me. I have to tell them to do the same thing over and over again, and I consider it a success if they simply give me eye contact, not to mention actually DOING the task. I have to watch them in the playground to make sure they don't find the open gate and walk out into the parking lot (which Rachel has now done TWICE). Bribery is my friend.

The twins are only 4 years old. Their cousin is 3. By next year, their little cousin will have surpassed them in almost every social measure if things continue on the paths that they are currently on. He's already more advanced in quite a few ways. And I know this shouldn't bother me. He is a happy neurotypical little boy who has 2 brothers that he IDOLIZES. They are much older than he is (12 and 14) and they are his standard which has led to him maturing, in some respects, faster than one would expect. He is a very sweet little boy. My twins both have autism. I have to think of things that most parents don't bother with because they know their children will respond to someone calling their name. And I've been living with this for nearly 2.5 years now.

But still, seeing him can be hard. He is going to outgrow my children in just a couple of years. My kids should be outgrowing HIM right about now (to come back to him in a few years). I'm being petty, I know.....but part of this trip has been a constant reminder of how much my kids have lost because of their diagnosis and me wondering if they will ever find something that will make up for all that autism has caused them to lose.

Friday, August 12, 2011

Strange Behaviors

For a while now, we've been watching a strange behavior come over Rachel. She always seems to get upset when Simon is upset. If he's crying, she feels the need to cry as well. Or, when he's angry, again, she will get upset. She will put up with him doing things to her that no one else could do (including hitting, punching, kicking, pulling hair, etc) and she will only rarely complain about it. But until now, it's only been between the two of them.

Now it's spreading out. Simon gets upset. It could be about anything -- a television program comes on that he doesn't feel like watching......his turn at the computer has come to an end.....or we have put our foot down about some behavior that has been driving us crazy. Like I said, it could be anything. And, as expected, Rachel gets upset about it. But now instead of coming to us crying about it, she seeks out Daniel. Most of the time, Daniel is off in a different part of the room and has nothing to do with what has made Simon cry out. But Rachel doesn't care. She will jump on him. She will start pummeling him with her fists. She will kick him and knee him in the chest. She has become like a child possessed. And she won't stop!!!! We have to get up and intervene on Daniel's behalf (because he won't do anything that could possibly hurt her -- this is Rachel, not Simon, after all).

This behavior started prior to starting the Focalin, so the new medication isn't the cause. I'm sure of this part because I actually brought it up to the doctor before the medication was prescribed. She suggested, instead of the modified time-outs that we were doing, to give her something else to hit that wouldn't cause harm to anyone (or anything), such as a pillow or a stuffed animal. And we have initiated that intervention. Every time we start seeing her running towards Daniel, we remind her to hit the pillow. And we have a pillow almost everywhere we go. But it's definitely not her first choice. She WANTS to attack Daniel.

But, if by chance Daniel is not around, she still won't seek out the pillow to hit. It turns more inward. She will start hurting herself. Her preferred means is to bang her head into the floor, the wall, the table, etc. If she's sitting strapped in her booster seat, she will knock the chair to the floor and then start banging her head on the hardwood floor. And the behavior is getting worse.

So, I'm watching this very VERY closely. I am still giving her the Focalin because, as I said, I really don't think that is the cause since the behavior started before the introduction of the medication. But I am holding the dose at it's current level for a while, even though our goals have not yet been met. I just want to see if the medicine is making this worse and contributing in that way. Even if I don't see anything to support that theory, I am definitely bringing this up with the doctor when we talk later this month.

But there are days......

Sunday, August 7, 2011

Chemistry Experiment

Yup.....I'm engaged in a chemistry experiment. And the daughter, Rachel. We started pumping her small body with (very very VERY) small amounts of medication to help her master her impulses.

Specifically, we started giving her a drug called Focalin. It is very similar to the more commonly known drug, Ritilin, but it's supposed to have eliminated one of the key side effects (its effect on appetite). Otherwise, the mechanism by which it works is, in theory, the same. On Friday, I met with the developmental pediatrician and we discussed a few medication options. In my opinion, this was the best. It's a short-acting stimulant that, once it's out of her system, it's pretty much gone. If we don't like what we see, just deal with it for about 4 hours and then we're back to where we started. But because it is so short-acting, she will likely need more than one dose to get her through her day at school, or we may have to time things differently.

Before beginning treatment, the doctor, Kevin and I sat down and developed a short list of measurable goals to track for success or for failure. They really are quite simple and reasonable. (1) She needs to be able to sit in her seat for mealtimes (target 15 minutes), (2) She needs to be able to follow the group in her weekly gym class (class lasts for an hour) without aimless wandering, (3) She needs to be able to listen to books before bedtime, and (4) We would really like to see some growth in the joint attention skills (more eye contact, in particular). We are watching each of these 4 things and rating them with each dose. This way, when I talk to the doctor in a couple of weeks, we'll have a reasonable measure of how successful this medication has been and when we will have a better understanding of when we have reached our target dose.

So, that being said, we gave her the first dose yesterday morning. We cut it to the appropriate size, hid it in a blueberry muffin, made sure she ingested it and watched. We knew it would take approximately 30 minutes to take effect and that the effects would last about 4 hours. Well, we didn't have to remind her as often to keep her chair still. We didn't need to remind her to keep her hands clear of herself as we normally do. But we really weren't seeing much else. I took her to gym class and there really was no improvement there, but the class was shortly before the medication would wear off, so we don't know if that was what was really going on. Today, the results are similar. Tomorrow we increase the dose.

So yes, my daughter has become a chemistry experiment. But it's a controlled one and it will hopefully help her in ways that we can barely imagine. We've seen so much improvement in her ability to function over the last 2 years. We just need to make sure that we give her all the tools possible to keep that growth active without causing other forms of harm.

Hopefully, we have found our answer, once we hone in the details a bit more. Time will tell.

Thursday, August 4, 2011

The strangeness continues....

.....I've mentioned before that Rachel is sensitive to Simon. If Simon gets upset, so does she. She will cry. She will come over and bury her head in our necks. And we know this behavior holds true for some other children to whom she has a "sensitivity" for. However, this has been changing. And in a very odd way. And a very unpleasant way as well....

At home, whenever Simon gets upset, she no longer starts to cry and comes to me or Kevin for comfort. She will run over to Big Brother Daniel and ATTACK him, like it's his fault. She will hit him. She will try to pull him down. She will knee him in the chest if he is lying down. She will climb onto his bed and wake him up if it's early enough in the morning. She'll even try to strangle him. It's like she becomes a child possessed.

And today, things got even stranger. Hurting Daniel wasn't solving the problem, so now she's taken to hurting herself. She will bang her head into the table or onto the floor, then come over to us crying because "Rachel bonk". Well, DUH!!!! When you bang your head into the table or the floor repeatedly, it's GOING to hurt!!!!! She seems to recognize that she's not getting the comfort she needs from us when she's just coming to us. We keep telling her that she shouldn't be upset just because Simon is upset. So, now she seems to be legitimately making herself upset and crying. I think she's hoping this way she will truly get the sympathy that she craves. And also by hurting the way Simon appears to be hurting, perhaps she can take away some of his frustration.

Tomorrow I'm following up with our existing developmental pediatrician to go over the ADHD issues. The appointment will have several goals including her informing us what she believes we need to do to address the ADHD, but also to help us find someone who will continue to follow our cases once she retires in a few weeks. You can trust I'll be bringing this stuff up (as well as other issues).

There are always more questions.....