Tuesday, May 31, 2011

Let's Go Swimming

I have gills. At least that's what my husband tells me. As long as I can remember, I've LOVED going to the pool. I started taking swimming lessons when I was probably about 5 years old and continued for several years. I may not be the best SWIMMER, but I do love the water.

For the last few years, we have been living in a development without a pool. But our neighboring development has a pool, and they open their doors for others to pay for a membership. This past holiday weekend, I decided that we were GOING to join this pool. So, we did. And on Monday, we went there for the first time.

We really weren't sure what to expect. Well, that's not really true. We expected bedlam. Mayhem. We didn't think Rachel or Simon would like the idea of getting into their swimsuits. We didn't think they would like to get into the pool. But we have also learned never to attach ourselves to our expectations. Things often surprise us.

We were wrong. Oh, were we ever wrong. They showed us that they are definitely MY children. They went running into the water. Rachel loved to splash. Simon jumped right in, sat down and got as wet as possible and quickly as possible. All 3 kids spent time in the big pool (separately, with my help) as well as in the kiddie pool. All 3 of them LOVED it. Rachel discovered that getting wet in a pool is lots of fun. Simon seemed to already know this. And Daniel is now motivated to learn to swim as he has discovered several of his friends already know this skill.

We did run into a slight problem. While all 3 were in the kiddie pool (after they had all experienced the big pool), I took advantage of the containment and went to speak with one of the swimming coaches about swimming lessons. While talking to her, Simon discovered an open gate and ran out of the kiddie pool area and jumped right into the big pool to swim out to where I was. Now, he doesn't swim. Fortunately, where he jumped was only 3 feet deep and he's a very tall boy, so he didn't go under. And he's still excited about swimming and not afraid of the water. But we are now working to make sure that this never happens again.

Photobucket Photobucket Photobucket

It's going to be an interesting summer. Trips to the pool will be part of our days. Perhaps we will try to get them involved in swim team or, at least swimming lessons (Simon DEFINITELY needs the lessons). And I will get to enjoy spending my summer at the pool!


(most, if not all, pictures of Daniel, Rachel and Simon taken by Kevin)

Tuesday, May 24, 2011

Making it work....

...a couple of weeks ago, I went to visit Rachel at school. The intent was to observe her in the pre-K class. She's been attending this class since late-October and has been unable to visit for longer than 15 minutes because of her behavior issues. At this point, she should be attending this class for 2.5 hours, basically spending her whole afternoon there. But, obviously, 15 minutes is a long way from 2.5 hours. They wanted me to observe her and participate in a discussion about where we should be going from here.

As we already knew, Rachel is very routine-driven. She is always looking for the next step. The schedule dominates her attention. This is especially true when she enters the pre-K classroom, probably due to the increase in class size from 6-7 kids to about 18-20 in the amount of time it takes for her to walk down the hall. She seems to become overwhelmed.

Her inability to focus on the task at hand is preventing her from making this process a success. She is unable to interact with the other children (which is one of the reasons she's there) because she keeps focusing on the next step. I observed her in "Writing Workshop Station", where the kids are encouraged to draw a picture for 10 minutes. She was given a piece of paper by another student and her teachers encouraged her to have markers, crayons, etc. The little girl next to her was trying to engage her, but Rachel kept saying "Clean Up song!". This is her least favorite station (put there intentionally so I could observe her there). Despite being ready for "Clean Up Time", she couldn't wait to run back to the carpet. She didn't help with the clean up at all. When she sat down on her letter on the carpet (each child is assigned a letter as a place to sit), she kept announcing that it was time to go back with her teacher.

Her inability to focus is holding her back. After observing this, I called the developmental pediatrician who first informed us that we were dealing with autism to schedule and appointment for her to look at Rachel to determine if our presumed ADHD and OCD is finally taking hold and starting to stand in her way. After all, Kevin and I were saying probably from before the time we learned that we were dealing with autism, she suffered from both of these conditions. They are often co-diagnoses, so perhaps we were right. We'll know if that's what a professional feels in about 6 weeks.

We did briefly talk about her current placement. We talked about whether we need to consider moving her from the CAPP program (where she currently is) to one of the less intensive PEP programs. The impression I received from her teacher and the representative from the Autism Office was they feel her current placement is correct and that we should continue to work with her and the pre-K. But she needs to be able to spend more time in the pre-K classroom. She probably doesn't need 4 hours of intensive ABA. But she does respond to ABA and should continue to receive it. Half-day with CAPP and half-day with pre-K is ideal. And they do feel that, assuming we CAN make that work for the next school year, she very well may be ready for a mainstream kindergarten classroom setting, with some added support including speech therapy and possible OT scheduled periodically throughout the week.

Now we just have to figure out a way to make that work.

Wednesday, May 18, 2011

It's About Time.....

...I know....people have been yelling at me to get Rachel and Simon into beds. Well, they've been telling me to put them in separate rooms. I'm not ready to do THAT just yet. But they have definitely gotten too big for their toddler beds. When I assembled them, I took note that each of them had a 50lb weight limit. Well, Simon is now approximately 55lbs. Rachel is probably about 45lbs. And they like to climb into bed together. In case you don't like to do basic math, we're looking at a combined weight of approximately 100lbs, twice as high as the safety limit.


So, this past weekend, we finally did something about it. We went to Mattress Discounters and purchased 2 mattress/box spring/frame combinations. Shopping for these was, well, we'll call it "an experience". The 3 kids (yes, Daniel too) saw beds and more beds and even more beds. And they were all calling the exact same thing....."JUMP ON ME!!!!!" And, being the "obedient" children that they are, they were all too happy to oblige. They would run (or jump) from one bed to another. Once we made the decision of which pairings to purchase, I took Rachel out of the store and brought her back to the car. Simon joined us soon afterwards. Kevin took care of making the purchase and we expected the delivery on Tuesday. Not a very easy errand, but a successful one.

On Monday, there was no school for Rachel and Simon (teacher training). So, we took advantage and ran some necessary chores. Haircuts and some more bed purchases. Specifically, we needed to be able to dress those new beds. So, off to Walmart we went. We went to the bedding section. And I allowed Rachel and Simon to pick out their own bedding (with limited choices). Rachel chose "Fairies". Simon chose "Toy Story".

So, on Tuesday, they arrived. 2 frames/box springs/mattresses. They were assembled and I dressed the beds. I also disassembled the toddler beds. When the delivery truck left, it took the crib/toddler bed mattresses with it. The room suddenly became much fuller.

Photobucket Photobucket Photobucket

When Rachel and Simon went upstairs for the evening, they entered their room and found a surprise. Brand new beds. Brand new themes. Much bigger than before. The books were gone. The small beds were gone. These big beds were now in their room.

Photobucket Photobucket Photobucket Photobucket

It took them a bit longer to fall asleep last night -- probably just over an hour by the time they were both asleep. And, as expected, they were playing with their new beds and the new layout of the room. But, as expected, they fell asleep together. Rachel fell asleep in Simon's bed. But not before they made a huge mess of the place.

Photobucket Photobucket

But I stepped in, picked up the room, and brought Rachel back to her own bed and tucked them both in nice and sound. They slept through the night.

Photobucket Photobucket

When we woke up, Simon was in Rachel's bed and Rachel was in Simon's bed. We're not sure when they made the switch. But we do know that they were both asleep at this point. I hope they like these beds as much as it appeared last night. I'm not ready to move them into separate rooms. I think they still need each other. And I really don't think they interfere with each other's sleep. So, for now, this chapter is behind us.

Wednesday, May 11, 2011

The time has PAST to let sleeping dogs lie...

Yesterday, I got ANGRY. Not about what I blogged about -- in fact much of that post was written several days ago and I just finished it off yesterday -- but about the latest story in the whole "Vaccine Conspiracy" fiasco with the settlement offered to families from the vaccine injury court. I'm already seeing fallout from this announcement from people who I know. They're claiming that they always KNEW that there was a link and here's the proof. And, of course, who's behind this latest insanity? Safeminds.org -- Andrew Wakefield's worshipers who are trying to deplete the world's autism financial resources to support liars and those who commit fraud. A group who really doesn't understand medical research, or research of any kind. A group who believes in the sensationalism of the media and seems to like to see their cause in print, and doesn't care who gets hurt along the way.

Well, I have news for them and for all of you. NOTHING has changed. This is NOT proof.

Don't get me wrong. I too was concerned that vaccines and autism were linked. When we first learned that Rachel and Simon were on the spectrum, after taking a little while to pretend that it never happened (while on a previously planned family vacation), I jumped in with both feet. I started doing my research. I tried to figure out what happened and what I did wrong. Just like almost every family I know who learns that their kids have autism. Vaccine theories were everywhere. So I read about them. And they made sense. The most visible signs of autism become apparent between the ages of 15 and 18 months, just in time to coincide with the administration of the MMR vaccine. In some cases there are sudden changes and regressions. In other cases, just a failure to develop. In almost all cases, there's a failure to reach certain milestones, in my family's case language based milestones. Since the MMR vaccine in particular tends to have worse side effects than many of the other childhood vaccines, there's a reasonable chance to believe that the vaccine is to blame. Good and well-thought-out theory.

I talked to our family pediatrician about this time. What did SHE think? Did she think there was a link between vaccines and autism? She didn't believe so, but still had the conversation with me. Afterwards, she gave me more literature to read (arguing both sides of the issue) and left me to draw my own conclusions.

If there was a link, answers would be easy. But, unfortunately, facts say otherwise. When the vaccine itself didn't show the link, they looked at the preservative thimerosal which is mercury based (thinking perhaps it was heavy metal poisoning which can in cases have similar attributes). Again, no link was found.

Finally, earlier this year, the fraud committed by Andrew Wakefield became public knowledge. His article in The Lancet was retracted and this nightmare appeared to be over. We would finally start to see resources poured into other areas to see if a real cause and link could be found. Since then I've been reading or hearing stories about links between ultrasounds during pregnancy potentially causing autism (study that I found is currently ongoing) and last week an article came out about the month of conception seeming to have a predictive effect (perhaps due to viral agents in the air during pregnancy). But, long story short, we still have NO CLUE what causes autism. We need to look at more causes.

Now THIS happens. I read the press release put out Safeminds.org (note was dated May 10, 2011 12PM EST) saying that the findings from the report printed in the Pace Environmental Law Review showed that there were 83 cases of autism in the 1300 families awarded compensation by the Vaccine Injury Compensation Program. The letter claims that this is considerably higher than what would be seen if the 1:110 published autism rate were accurate, especially those who are considered "Vaccine Injured".

I also love how a report in a LAW journal is igniting this thing all over again. The LAW isn't concerned with scientific fact. The LAW isn't concerned with research and supporting conclusions. The LAW is about turning any and all situations to suit one's own personal agenda. But even Ms. Holland states, "This assessment of compensated cases showing an association between vaccines and autism is not, and does not purport to be, science. In no way does it explain scientific causation or even necessarily undermine the reasoning of the decisions in the Omnibus Autism Proceeding based on the scientific theories and medical evidence before the VICP. Nor does this article have anything to say about state childhood immunization mandates in general." (page 482 of the article)

A couple of real life, grown up things that I'd like to point out. Life is unpredictable. Life isn't always fair. We all do thing to make things work and make sense. We (typically) don't take unnecessary risks. But there is still "life". If you are allergic to peanuts, a peanut butter sandwich can KILL you! And how did you learn you were allergic to peanuts? Chances are you ate some or had physical contact with a peanut product and had a (hopefully) mild reaction. You investigated and now know to avoid all peanut products. I'm sorry that there are so many that can't experience peanut butter (which is a favorite food of mine, especially when combined with chocolate ice cream), but it's just LIFE.

There is also such a thing as chance. That's why all scientific studies depend on statistics to provide the answers. Statistics allow you to look past chance and see if causality really does exist. If you have a balanced coin, you can flip it 100 times. A good estimate as to how many times the coin would land on "Heads" is 50 because there is a 50/50 chance each time you toss the coin for it to land on "Heads". However, it can land on "Tails" 3 times in a row. That doesn't make it an unbalanced coin. As you continue to toss it over and over and over again, these anomalies balance out. Having the coin land on "Tails" those three consecutive tosses is "chance". This is why we need to look at the larger studies. There are approximately 5 large scale studies looking at vaccines and 3 looking at thimerosal that all show there is no link between these exposures and autism.

These 83 children, if vaccines really did cause their autism, fall under the "chance" category. But I don't believe that to be the case. I think that something else CAUSED the autism. Vaccines may have caused other things to happen to them and over time, autism has been found. There may have been a mitochondrial disorder (as was the case in the parent interviewed on FoxNews on May 9) and vaccines may have triggered something.

But we can't afford to back away from vaccinating our children because of a fear of them developing autism. If as a parent, you have concerns, I URGE you to talk with your doctor about ways to minimize the risk, including potentially changing the vaccination schedules. Speaking as a parent, I can live with a child having autism. I can live with children having autism. What I CAN'T live with is the guilt of having to bury a child because I refused to vaccinate them out of fear. I CAN'T live with the guilt of having to watch a friend of my child be buried because they were exposed to something via my own child, because of a fear of vaccinations. Our decisions have consequences. We always need to remember that.

1. Press Release from Safeminds.or; for release May 10, 2011 12PM EST
2. Mary Holland, Louis Conte, Robert Krakow, and Lisa Colin, Unanswered Questions from the Vaccine Injury Compensation Program: A Review of Compensated Cases of Vaccine-Induced Brain Injury, 28 Pace Envtl. L. Rev. 480 (2011)
Available at: http://digitalcommons.pace.edu/pelr/vol28/iss2/6

Tuesday, May 10, 2011

Is There EVER a "Right" Answer?

You see, we have a problem (what else is new?). Rachel's IEP Meeting was October 17. At that time, it was decided that she should be included in a typical pre-K class in her school to allow her to work on her social skills with her neurotypical peers. This would help her learn how to interact with others and would hopefully allow us to see her enter a typical kindergarten classroom setting at best, or at least allow her to be placed in "The Learning Center", one of the special education options for our public school system.

In our opinion, social skill development is the biggest shortcoming of the program she is currently enrolled; it is a program that is 1-to-1, highly-intensive ABA. It is a language and behavior based program. She rarely spends any time with other children with any realistic expectations of forming friendships. All of her "relationships" are with her teachers. So, by including her in the pre-K class, she would still get the 1-on-1 that the program is designed for part of the day and still be able to develop social skills. She was to start at 15 minutes/day and work her way up to the full afternoon.

It has been 6 months. She is still only attending this class for 15 minutes/day. It's not because of the school's refusal to incorporate the plan. It's because Rachel has been unwilling to cooperate. She cannot sit still and refuses to follow instructions. They have tried several different things, and they still have been unable to increase her time in this classroom. The question is "Why?"

I received an email from her teacher that we need to consider her placement. That can be read in a couple of different ways. Are they thinking that we need to change her overall placement for next year? Do they think we should modify her existing IEP? Or are they just looking for suggestions from me as to how to make this inclusion happen more successfully? This has led to me scheduling an observation visit on Wednesday afternoon, specifically to see her inclusion time with the pre-K class.

I was thinking that they may possibly be thinking putting her in a combination of programs. I mentioned in an earlier post that one of the family of preschool programs offered by our schools is called PEP. There are several different iterations of "PEP". The schools where these programs are located, often have more than one of these programs. There are children who cross between different PEP programs (I know of one who spends part of their day in PEP-INC and another part in PEP-Classic). However, neither the locations that I know of which has CAPP (where Rachel is currently) has any of the PEP programs. I was wondering if a good solution would be to combine the two programs (CAPP and PEP-INC) in the way they are currently trying to combine CAPP with the typical pre-K (perhaps she's not ready for that yet), but this is likely not a feasible option. I know that the schools are required to implement the IEP as it is written. I also know that they will not write an IEP in such a way that the resources don't exist to implement it correctly.

So, what's the right thing for us to do? When we were approaching her meeting in October, I was worried about the possibility of her being removed from the CAPP program. And I believe I was right at that time. And I'm still concerned about this. But today, May 10, is this actually the best thing for her right now? Would she be better off switching to PEP-INC? What (if anything) would we be sacrificing considering how well she learns via the ABA model?

Stay tuned.....right now, I'm not sure what that solution is going to be. Or, perhaps I'm reading too much into this meeting....

Saturday, May 7, 2011

Happy Mother's Day!

Happy Mother's Day to any mother who comes by this blog post. That is my wish to all tonight. Regardless of whether you are "Mom" to one or to many; Whether you are expecting your first child; Whether you have experienced Mother's Day many times before or this is your first; Whether you have a child of your own or you care for someone else's child; Whether you are close enough to someone you consider them "like" your child.

We all have something in common. Mother's Day (to me) is not about celebrating the birthing process. It's about celebrating those who care for another in that very special way. It's to celebrate those who nurture someone; those who help shape another human being and share their love in ways that only a parent can truly understand. We all may agree with our own mothers, or disagree. But we are the people who we are because of our mothers.

So, again, I say "Happy Mother's Day" to everyone who calls themselves a mother. May you enjoy the blessings of your family and, for some of you, the relief of the stressors that they may cause. May you all have exactly what you wish for on this special day where we honor our Mothers and recognize how special all Mothers really are.

(sending an extra special "Happy Mother's Day" to my own Mom who may or may not see this note as she is currently traveling)

Wednesday, May 4, 2011

Check this out...

...if you are interested, I have something for you to check out. About.com is highlighting some stories of Autism Moms in celebration of Mother's Day on Sunday. I learned about this early in the week and submitted an entry.

"Just Mom" was published there earlier this evening. I invite you to come and see what I had to say on the subject.

I hope everyone has a good evening, and a Very Happy Mother's Day (if it applies).


All parents know and dread this word. We've all been there. They happen all the time. They happen for reasons. They happen for no reasons at all. They just happen.

Tantruming is probably one of the most common complaints of parents to children on the spectrum. They happen ALL THE TIME. "Neurotypical" kids often grow out of the phase of experiencing them daily or weekly or at a frequency of any short measure of time. Not autistic children. They may learn to control their impulses that come out as a tantrum as they grow. But they usually continue to face those same stimuli that bring on the screams and the kicking and the rest of the behaviors that are seen in 2 and 3 year olds. And they may or may not be able to maintain control.

Has anyone here had a day where everything around them seemed to be defined by tantrums? Or a day where the entire 24 hour period appears to be a single tantrum broken up by brief periods for a child to muster up the energy to continue? Or children? I have, and if you parent a child on the spectrum, I suspect you can say the same. Those days are HORRIBLE! Those are the days you just don't want to get out of bed. Those are the days that you want to call in a "Do-Over". Those are the days that test us in every possible way. And often, those are the days where a co-caregiver has to work late or is out of town and you have 1,000 things to do.

There are some things that Autism Moms do to avoid those days. We have our routines and predictability which usually soothe our children. We know what our kids like and what is a near-guarantee to set them off. We know what rewards typically work best. We know how to read the signs that a tantrum is brewing, many times before they even start and can take some steps to minimize the fallout. And we have our defenses. But they still happen. And they happen often.

The world is a busy place. And life happens fast. We see it on television. We see it in the workplace. We see it on the playgrounds. We see it in the schools. And often we contribute to it. We have to get this done so we can run off and do something else. But my children don't always do things the way others do. One of them generally prefers to go slow. He embraces the moments. He takes it all in. He can't be rushed. But, at the same time, you have to get through activities. That's often where Simon's bad days begin. When I need him to go faster than he is willing to go. And once we start down that path, it becomes very difficult to turn back. But on the plus side, he has very definite tantrums. They are hard and intense. And they will last however long the cause exists. And we may or may not ever learn what that cause is. But once he's done, he usually returns to being happy. That is, until the next starts.

Rachel, on the other hand, wants to go fast. She wants me to speed up the bedtime songs and gets upset when I refuse. Her catch-phrase over the last couple of months is "Faster!". The faster the better. And because of it, she has a lot of fun playing with Daniel and rushing around throwing the ball and jumping on the trampoline. But her tantrums are different. They come out of nowhere. She can be perfectly happy and then all of a sudden, the world has crashed down upon her. I mentioned already that Autism Moms can often see a tantrum coming. Not in Rachel. There's a phrase that I learned on the Sci-Fi show, Babylon 5. "Do not try the patience of wizards for they are subtle and quick to anger." (quote found http://www.cs.tut.fi/~albert/Quotes/NoRobots/B5/025.html). That works for Rachel as well. And when she gets angry, LOOK OUT. The tantrum comes and it is here to stay. She can draw out a tantrum for hours with just short breaks to gather the energy for the next wave.

I hate tantrums. I won't sit here and throw a tantrum of my own to express that sentiment, but you can take me at my word. I look forward to the day that I won't have to cope with them. Unfortunately, that day is a VERY long way away......