Thursday, March 21, 2013

Steadily Climbing........

My mind has been reeling for the last 24 hours or so.....since the latest numbers have come out regarding the prevalence of Autism in this country.  Now they are saying that one in FIFTY school-age children are on the spectrum.  Let's look at this another way.

  • In 1995, the rate was 1 in 500.
  • In 2001, it had increased to 1 in 250.
  • In 2004, it had risen again to 1 in 166.
  • In 2007, there was yet ANOTHER increase to 1 in 150.
  • In 2009 (when our journey began), it was 1 in 110.
  • In 2012, the shocking news was announced that it was now 1 in 88.
  • Yesterday (2013), the newest announcement is that 1 in 50 school-age children are on the spectrum.
There are a few things about this latest study that has me doubting these numbers (at least the ones that were just announced).  The survey that this statistic is based had a very poor response rate.  It was also answered by parents as opposed to medical professionals.  I'm not saying that parent reports cannot be trusted.  However, it is more likely that parents of children on the spectrum would respond to this type of survey because (1) they want answers and (2) they want to share information, especially if they think that it may (in time) help their own children.  In other words, if you were to call 100 parents to ask them questions about Autism and 90 said they couldn't talk to you, the remaining 10 are more likely to have children on the spectrum (or suspected as being on the spectrum) compared to the remaining 90 who wouldn't take the time.

There are flaws in the other direction about the survey that estimated 1 in 88 children were being diagnosed with an Autism Spectrum Disorder.  In that study, they only surveyed a small portion of the country (14 states).  There were so many areas that were missed and not accounted for in those results.

I can honestly say that I don't believe that the true number is 1 in 50.  But I also believe that the 1 in 88 is an underestimate.  The true answer is probably somewhere between the two.  Maybe 1 in 75 (my own blind guess -- please don't assume there is any validation behind this number), which is still appalling.

But there is one thing that cannot be denied, with several consequences.  The numbers are going up, not down.  The need for services is growing, not shrinking.  These children will grow up and become adults with an Autism Spectrum Disorder diagnosis who may require additional services to allow them to live independently or, if that isn't possible, for them to be productive members of society and to be cared for.  They can't be swept under the table.  They need their voices to be heard, even if they are unable to use their voices directly.  We cannot ignore this problem.  And we can't allow others to ignore the problem.  We need to speak up and out for our kids.  We need to be sure that as these children grow, they will have the supports they need so that they can contribute in whatever way suits them.

These are individuals.  They are people.  And they have a stumbling block to overcome.

We need to be sure that they are given all of the tools they need so that they can succeed.

Wednesday, March 20, 2013

Two Posts

Since I haven't been able to get writing here, I wanted to share a couple of posts of mine that were published elsewhere this week (one on Monday, one on Tuesday).

The first one is "Laundry is a Metaphor".  This was published on Monday on the SPD Blogger Network written when I realized that, no matter how hard I tried, I can't seem to get things done.  I have a tendency to take on more and more roles and, at the end of the day, there is still more to be done.

The second one is "Why We Must Remain HOPEful Parents" on Hopeful Parents.  I write posts for this page every month on the 19th of the month.  This is the story of what happened to me a few years ago.  I've told this story before, but I can't seem to let it go.  And every once in a while, I need to remind myself how important it is to trust myself.

So, I have been writing.  But for some reason, I haven't really been able to get things up here.  Hopefully that will go away soon.

Tuesday, March 12, 2013

Happy Anniversary

4 years.....

Clearly on the spectrum.....

Severe Autism.....

Respite Question....yes or no.....


ADHD, POTS, Anxiety.......

Learning Center, Home School Model, Mainstream.....

Medication Question....yes or no......

Yup.....4 years ago today, on March 12, 2009, we realized that the world we were living in was "The Autism World" when a doctor announced to me like it was a given that both of my 26 month old twins were "clearly on the spectrum".  I don't know if she realized that she was the first person who told us this, or anything even close to it.  I don't know if she realized the bomb that she had just dropped on my head.

At that point we had already contacted our local Early Intervention organization (MCITP) and were scheduled for an evaluation for services.  I had mentioned that an Autism work-up would probably be the way to go, but I asked for help with language development.  I was blind (well, mostly blind) to all of the other things that were going on.

We changed schools when they turned 3 and went through that transition.  I struggled to come to terms with separating them on their 3rd birthday when I had planned on keeping them together through kindergarten (a dream I had for the two of them).  I even had someone tell me that they would never enter an academic college bound track given their preschool placements.

Just this last year we had a transition to kindergarten.  The year started with difficulties getting Ballerina adjusted to a one-on-one special education classroom to a mainstream classroom with 16 other classmates.  Additionally, she had her typical summer regression which made it difficult to determine whether her placement is appropriate or if she just needed more time.  For Music Man, for the first time I really started noticing how many problems he was having.  I'm not sure if I was simply blind to them before or if things have been getting steadily worse.

Now they are both medicated.  We have seen a great improvement with Ballerina as most of her issues have been focused-based.  And she is making friends.  She has extra curricular activities in dance, gymnastics and girl scouts.  She's going to birthday parties and enjoying her kindergarten year.  Music Man, well, we just started.  Time will tell.  But he's wising up to the fact that something is hidden in that applesauce and he's starting to balk at eating it.

Who knows what the next year holds?  It's been a HUGE roller coaster.....and not the one I was planning on riding.  But sometimes things happen and you have to roll with it.

I think I have 3 AMAZING kiddos.  2 of them are "Clearly on the Spectrum".  That's the way it is.  And we've reached the point where we can't imagine it any other way.

My kids don't need "fixing".  They just need to figure out where they fit and how to make that twists and turns so that the piece will fit into the whole.

(small side note.....this is also post #300 on this blog)

Monday, March 11, 2013

Decisions Made

Music Man is now on medication.  Yup.  I said I wouldn't do it unless I felt it was necessary.  I put up every possible barrier I could think of to make sure I didn't have to do something to change my children.  But now, both of my twins are medicated.

Ballerina has been on Focalin for some time now.  To say that it solves all of her problems wouldn't be accurate.  But it does attenuate so many of her impulses which allows her to focus and learn.  We recently increased her Focalin dose (doubling it, in effect, but that's only because you can only increase it by 5mg increments and she was only receiving 5mg/day).  I really don't directly see the effect of the Focalin.  She only receives it when she has school (benefit of a steroid -- when it's in her system, it works but you don't need to maintain a level so she can have "time off").  But her teacher is telling me that she is noticing more attentive behavior, especially while on the carpet.  She comes out of school generally happy and I see the progress in the work she brings home as well as the way she handles her homework.  I'm still walking her through it all, but I'm supposed to be.  She's getting the idea as the year has been progressing.

Music Man on the other hand, didn't have an ADHD diagnosis.  Until this year, I really wasn't hearing much about his attention problems.  But this school year, I am daily getting reports that he is "out of location".  He is requiring almost one-on-one in order to get him to complete a task.  He's become more and more self-willed with more and more anxieties that have been coming to light.  When we saw the developmental specialist in October, she had brought up the possibility of prescribing Strattera, and non-steroid ADHD medication that also seems to help children with anxieties.  But at the time, I didn't think this was necessary.  I didn't think that his attention issues were that severe, and his anxieties were more of a concern but I didn't want to give him an ADHD medication if this wasn't much of a concern. I didn't realize what was going on.

For the last 4 months, I've been watching my son struggle.  I've been seeing him perseverate on the things that cause him anxiety (specifically, elevators).  I've been seeing the reports coming home from school every day that elopement has become an issue once again (this resolved before the winter).  I'm watching him struggle every day.  It was so bad one day about a month ago.....I was in the school doing some volunteer work (I'm there every Tuesday) and I hear him screaming.  His screaming is so loud that he literally empties the office because they are looking to see what is wrong with this child.  The problem was that he had to walk past an elevator to get from his classroom to the music classroom (and he has to pass this elevator several times a week to get to specials).  After trying for several minutes, they actually took him outside to get between the two doors so they could avoid having him walk past the elevator.  They did make him successfully walk past the elevator to return to the classroom and it was a one-time thing (once they knew the severity of the problem, they started implementing strategies), but this was a slap in the face to me, showing me how bad things really are.  It was this that made me realize that we need to do something.

So, on Tuesday evening, Music Man began Strattera.  We have now increased the dose from 10 to 18 mg as we are stepping our way up to 40mg.  We were told that we shouldn't see much of an effect for 4-6 weeks.  Every morning, Music Man has a couple of spoonfuls of applesauce.  What he doesn't know is that inside the applesauce is Strattera powder that I get from opening the capsules.  His teacher told me late last week that he seemed to be a little more manageable in terms of his anxieties, but they weren't seeing any changes with the attention issues.  But his teacher is familiar with Strattera and that it takes time to reach full effectiveness.

So, now we have 2 children on very different medication.  One of the things that I'm terrified of is mixing up which child gets which medication.  They take it at the same time, but in very different ways.  And, even opened up, there is an appearance difference between the two.  Ballerina has her Focalin mixed with chocolate pudding.  Music Man has his mixed with applesauce.  Like I said....very different.  But they get their medicine early in the day, before I've had anything to ensure I'm awake (i.e. coffee).  Hopefully that will never happen.

Living life through chemistry.....that's us!