Friday, October 11, 2013

Filling Everyone In

So many things have been happening these last couple of weeks that I've been a bit overwhelmed.  There has genuinely been no time to sit down and write here or anywhere else.  So, please forgive a very long rambling post, but the time has come to put everything down and get my "publicly available online journal" current.  I can't quite say "Up To Date" because I'm sure I'm leaving many important things out, but at least I don't have to worry about telling back stories and can start fresh.

You see, starting fresh is something I always try to do on October 11.  As it's my birthday, it gives me that new outlook.  This year, my goal is to do a better job organizing my many obligations -- to myself, my family, the organizations that I work with, to my writing(s)....everything.  There is no reason why there isn't time to get the things I desire to get done taken care of.  The problem is a lack of organization.  So, that's what I'm trying to do right now.

But I know you aren't here to read about me rambling on about how I need to get organized.  You want to read about my kids and how they are doing.

I'll start with Simon.  He has started the same Special Needs Dance Class that I had previously enrolled Rachel in.  I'm not allowed to see what happens during the class.  I can hear some things through the walls as I wait, I can see some things through a window, but in general I'm in the dark.  So, after class, I always try to ask the teacher questions about his performance.  And he seems to be enjoying it and doing quite well.   But he never wants to do anything with the group.  He has a tendency to hide behind a small barrier that is typically where the children place their shoes (they come in wearing ballet shoes and change to tap shoes about halfway through).  At his last lesson this past weekend, the teacher told me that Simon is doing everything and demonstrating the skills but he will only do it when he's behind that barrier so he believes that no one is watching.

Simon has also had a few other activities happen these last few weeks.  First was a doctor's appointment to Children's Hospital for his regular follow-up.  Normally, when we go, I bring the leash (cute animal harness) so he can stay within an arms reach of me when we are walking through any form of parking lot.  I do this because he is TERRIFIED of the elevator and any building which contains an elevator.  He allowed me to put the harness on and we walked into the building holding hands.  He immediately and gently walked to the stairs and into the waiting room.  And, at the end of the appointment, he behaved well leaving the building and heading back to the car.  I didn't park in the parking garage but on the street so we didn't have a second elevator to avoid, but the improvement since our last visit there 6 months ago is HUGE!!!!!  Even the doctor commented on this.  When she came into the exam room, we were already there.  Simon was reading a book aloud to me about a bus making it's many stops.  Every time the bus stopped, someone would get on and / or off.  And then, at the end of the page, the book would ask him to find something on that page (sometimes related to the bus story, sometimes not).  And every time, he would read this and search for the item on the page.  This is the first time that I ever saw him exhibiting reading comprehension in any way other than describing the "Beginning, Middle and End" of a story.  And the doctor, who was witnessing this, said she was "tickled pink" to see the progress he is currently making.  It was probably Simon's best visit there to date.

Also, Simon had an IEP meeting this week.  He is 1 of 3 first graders in his classroom right now along with 5 kindergarteners.  The teacher chose to keep these three students because it was believed they would do better with a second year with the structure she provides that is lessened as time goes on.  Also, the familiarity would help them and they can be examples to the kids coming into the school.  His teacher started the meeting by saying how happy she was that he did stay with her.  That because of his familiarity with the classroom (even though there were many changes since last year) and the staff, it made it much easier for him to find his place at the start of the year.  Additionally, the staff knew him quite well so that they were able to address issues before they were allowed to become issues.  Overall, he is growing in so many ways.  They described several social activities that he joins in with, including ones that he enters of his own volition.  This is one of my biggest concerns as Simon really does prefer to be isolated from others and really does his best to avoid human contact with almost everyone.  His list of people who he likes is VERY small and it's very difficult for him to interact with someone who isn't on his preferred list.  But he's been doing much better with this during this school year.  He is still having trouble putting concepts together as he is very much a rote learner as well as a splintered learner.  But he has demonstrated his deviousness at every opportunity and is happy to go to school.  I know he's not there to have fun, but at 6 years old, if going is such a chore, he will never be successful.  He genuinely LIKES school (although not as much as his sister) and is finally demonstrating an ability to try new activities (in his own way) under the supervision of his teachers.

Now, onto Rachel.  She is also having a great start to the school year.  She immediately acclimated to returning to school which was not something I was expecting given past experiences.  She has two friends from last year who have joined her in the classroom this year as well as a fellow Daisy from her Girl Scout Troop.  She is willing to do all of her work, the aide working with her is able to step back regularly and has reduced the amount of "Good Job"s that she receives.  She has demonstrated that she CAN do the work independently and now they are starting to expect this from her.  It's not always easy and they have to watch for her becoming overwhelmed when things get to be too much, but that has only happened a handful of times.  She is very happy to keep trying her best and is very pleased with the assignments she is bringing home.  I am hoping to begin volunteering in the classroom at the start of the second marking period (beginning of next month).  Her teacher really wants to make sure that she recognizes that he is the authority figure in the classroom before I make an appearance.  As I have been able to come in for observation visits before, I suspect that this will go well once we have one or two visits.  But I am working with her teacher so we see the best possible results.

She also had a visit to Children's Hospital for a regular follow-up.  She saw the same doctor as Simon and also demonstrated how much she is growing in her development.  I read a report that her teacher had emailed to me to the physician so she could hear how she is doing in school (in addition to bringing a copy of her interim school report).  Unlike Simon, she was VERY impulsive during this visit, but she was still patient (relatively) and cooperative.  She was willing to do whatever the doctor asked of her and demonstrated a HUGE improvement in comprehensive skills testing at least on grade level in all areas (this is a FIRST for either of the twins)!  We did discuss some social concerns I have for her.  She is complaining often that people are "laughing at me".  I've seen her say this at home with regards to her brothers (when they are doing no such thing -- they're not even laughing) so I'm not certain this is the truth.  The doctor gave me questions to ask her when she starts saying this of the kids at school, trying to ascertain if this is actually going on so I can determine the best course of action.  But I have noticed that she is becoming more socially aware and is really trying to make friends and to be a friend to others.  She is also beginning to initiate imaginative play with her dolls and her stuffed animals.  I want to encourage these positives, so I have to be careful not to thwart the positives while trying to understand what she is telling me.

So, there is a VERY long "summary" of our lives these last couple of months.  Sorry to drop it all in one post, but if I don't you know (as well as I do) that these stories will never be told.

Wednesday, September 18, 2013

What a Difference A Year Makes

On Monday and Tuesday, I attended Back To School Night for all 3 kids (well, for Rachel and Big Brother.....Simon's I kinda talked to the first grade SPED teacher to see how he's doing to get another perspective).  Big Brother's, for me, was really more about the information and getting to know the teacher.  He always acclimates pretty well to a new school year and he's happy to have several friends in his 3rd grade class.

Rachel, however, had such a miserable transition into kindergarten, I spent so much time worrying about how to make the start of first grade smoother.  We talked about how she would be in the new classroom.  We talked about how the lunch time was different.  We shared with her all of the information that was available to us.  But we had done this last year as well and still had trouble.  So, when I brought her in on the first day of school, I wasn't surprised to see the looks of apprehension on her face as we approached the building or the All Purpose Room, where the students were gathering for the day.  I wasn't surprised to see her sliding back to ensure that she would be the last person in line (a technique she used to cope with the All Purpose room early last year).  But her paraeducator, who worked with her so well all year last year, went to her and reminded her that she was supposed to find her place in line and remain there until it was time to go to class.  And she complied.

Since school started on August 26, I have been in touch with her teacher on numerous occasions, getting updates to how she is doing.  And I talked with him more during Back To School Night.  And he describes his experience teaching Rachel to be VERY different than what he was told to be prepared for.  She has only had 2 meltdowns since school began, and one of them he figured out what caused it (just a little too late) so he was able to intervene the next time a similar situation arose.  The second, he really didn't seem sure what had set her off.  She likes to work with her classmates and is demonstrating early signs of making friends.  She is fortunate that a former classmate (well, two of them) sits near her and they work together in a small group.  Additionally, a friend from girl scouts is also in her class and they have bonded during these first few weeks of school.

I have been avoiding talking to the school principal about her.  He told me last year during her IEP Meeting, when we were trying to figure out how to help her transition back to school that many students don't experience the same regressions that we've historically seen as they grow older.  They don't go away, but they aren't as severe.  And he suspected this would be true for Rachel.  I kept insisting that I didn't believe him.....we had several transitions into school (including the transition from Early Intervention to Preschool) and none have been smooth.  I couldn't see the start of this year being any different.  But, I have to admit (even on paper) that he was correct.  I hate that!  ;)

It's been a great start to the year!

Tuesday, September 10, 2013

Experiment Is Over

All right ... after I've been away from writing for a while, I'm really trying to get back into it all.  And when I was writing yesterday's post, I realized something.  It is TOTALLY unnatural for me to anonymize my children here.

So, I am going to stop.  Bye Bye "Ballerina" and "Music Man" (but I'm keeping "Big Brother" -- he likes that title).  Hello "Rachel" and "Simon".

That is, when I post here.  When I post on more public forums, I will continue to anonymize my children.  But on my own personal blog, in my own little world, I'm not going to worry about keeping their names out of the stories.  I chose those names because I like them.  And I want to just be able to tell my stories.

So, they're back folks!!!!!!

Monday, September 9, 2013

First Day of School, 2 Weeks Late

2 weeks ago, school started for us.  I became a mother to 2 first graders and a 3rd grader.

I was so excited for this.  I was so happy for them to get back into a routine.  And I needed the break.

Music Man decided the night before school started, that he didn't want to go back.  He seemed excited up until that point.  But in the end, he decided he wanted to stay home.  But we went to his closet and chose his clothes for the next morning.  That seemed to have done the trick.  All 3 kids went to bed excited for their new adventure.

Ballerina was up first in the morning.  She just couldn't wait to put on her skirt and show off her bling!

 photo null_zpsee550710.jpg

Big Brother was up soon after and he too wanted to go to school.  He was disappointed that it wasn't time to go quite yet, but he still had over an hour to wait.

Finally, Music Man woke up and was prepared to get ready for a new school year.  His twin sister really tried to drive the enthusiasm.

 photo null_zps856fd610.jpg

But finally it was time to head to the car.

 photo null_zps1f804486.jpg

Almost the entire school was gathering in the "All Purpose Room", lining up with their classes.  When the bell rang, they had a short "Monday Morning Meeting" and then were dismissed to their respective classrooms.

 photo null_zps4a216994.jpg    photo null_zpsbc7773f8.jpg    photo null_zps5b6eeca7.jpg

They got through their day.  And they had a good first day.  And, at the end, I was waiting for them and they were happy to be picked up!

 photo null_zps9e2a84c7.jpg    photo null_zps0eb557d7.jpg

And we finished off the day with a trip to The Little Gym of Germantown for Rachel's first Hip Hop class.  Immediately after class, they had a special "Welcome Back to School Party!"  What a great way to end the first day of school!!!!!

 photo null_zpsa3d17d63.jpg

Sunday, August 25, 2013

The Battle in my Head

Monday (tomorrow) is the first day of school.  Big Brother is starting 3rd grade and Ballerina and Music Man are entering 1st grade.  All 3 are still in the same school and I think all of them are looking forward to the return of routine.  And for the last week or so, we have been doing the normal "preparing" for another school year.

Before the end of last year, I had a conference with Music Man's teacher.  I knew he was struggling in most ways (non-academic) and I asked the question if he needed to repeat kindergarten.  I was wondering if he had the social maturity to advance with his classmates.  His teacher explained that he was definitely ready to move on to first grade and that she truly believed he was going to be successful. That year, her class was a combined kindergarten/first grade class (8 kindergarteners, 3 1st graders).  I followed up that first question if she thought she would keep Music Man in her class should she have a combined class again.  And she told me that she didn't believe so.  The way it was determined who would stay with her and who would move to the other teacher for that year indicated that Music Man would be moving on.  And, at the time, she wasn't sure if she would have any first graders in her classroom (she's basically a kindergarten teacher after all).

But as the year was about to end, she brought Music Man to the car and mentioned that it appeared that they were getting more kindergarteners for the Learning Center than one teacher could teach adequately.  In this 5 minute conversation, she indirectly suggested that she may keep Music Man in her class after all for first grade, should she have a combined class again.  She felt, at that time, that he may benefit with another year in her classroom (but he would still be a first grader).

On Thursday, she called me.  She wanted to inform me before I saw it through other means that she would be Music Man's teacher again this year.  When I first heard this, I was THRILLED.  This is a teacher that he knows and likes.  He understands what she expects from him and he already knows what he can get away with and when she will put her foot down (for the record, he can't get away with much of ANYTHING).  Her reputation is untouchable, and the reputation is well earned.  We saw a great deal of growth in him all year long and, despite still having many issues that we need to address, we felt he had a very successful year last year.  And they did this combined class just last year, so I knew that the teachers and staff were comfortable handling the transitions that are necessary (as the first graders are more integrated with the general education students than the kindergarteners).

But the more I think about it, the more I am concerned.  I'm still 10000% thrilled that she's his teacher, but I wonder about the thought process that made her keep him in her classroom.  He is very bright and more than satisfies the criteria to be a first grader.  That isn't in question.  But he is very big for his age (not just tall) and he will definitely stick out in this classroom of younger students.  Does he care?  Absolutely NOT.  He doesn't notice anything that has any social context to it.  From a social standpoint, he's probably closer to a 3 year old than a 6 year old.  He is very much an isolationist (if you can call a child by that description) and really has no desire to have friends or peer interactions.  He is a bit of a challenge with his behaviors and his phobias and the kindergarteners in the classroom may be better choices for his peers than the first graders that were in his class last year.

Once again, I need to learn to put my own perception of things to the side and try to see things from my child's point of view.  He will still do his thing and will be quite successful I have no doubt.  And 2 years with this teacher is a prize that I cherish.  I think that, once I see how things work in practice, I'll be more and more comfortable with this arrangement.

Wednesday, August 7, 2013

Embracing Helicopter Mom-Dom (Part 1)

When you hear the phrase "Helicopter Mom", what is the first thing you think of?  A parent who hovers over their children, stifling their opportunities at independence?  Preventing them from standing up on their own?  A parent fighting their child's battles?

Or do you see an advocate?

Lately, I have come to realize that it's both.

This has been a summer of self-reflection for me, and the way I deal with my children and their activities.  Big Brother has Dad looking out for him at most of his extra-curricular activities (sports, in particular).  But swimming is my thing.  I'm the one who pushes all 3 of my kids to participate on the swim team and use that opportunity as a chance to teach them this important life skill.  And I had several conversations with their coach this year.  And, after each one, I thought about how she likely perceived me to be.

For Ballerina and Music Man, I think she recognized that I was just trying to be sure that they weren't being excluded unnecessarily.  But I was willing to work with her.  If she didn't feel they were ready for something, there was no questions asked.  And we learned quickly that Music Man didn't like away meets and so we didn't push for anything when the meets weren't at our own pool.  But she was willing to have Ballerina try to race in a freestyle race when I requested this, and she was successful.  The last day of racing, she swam both of her races completely independently (with an older swimmer in the next lane ready to help should the need arise).  And Music Man......he did as we expected.  He got through the season.

But in some of our conversations, Big Brother's name came up.  He had a personal goal and I wanted to be sure that the coach was aware of it.  And I wanted to be sure that he understood why things weren't progressing as he would have liked in most circumstances.  So, I had to figure out when it was my responsibility to speak up for him and when to send him to talk to her for himself.  I'm not sure if I was completely successful.  I started by having him go to her and ask these things but he never came back with satisfactory answers, at least from his perspective.  So, I felt I had to jump in.  I never questioned her actions or her responses.....I just needed to understand so I could pass on this information to my 8 year old son in a way that he could understand.

But I find myself wondering what the coach sees when she looks at me.  Does she recognize the subtle difference between trying to advocate for my son and making sure he understands so he can continue to work or improve?  Or does she see a meddling parent?  And what do Ballerina's and Music Man's (or even Big Brother's) teachers see when I do the same kind of thing during the school year?  All can say that it doesn't matter what they "see" because these are MY children and I know and understand their needs better than anyone.  But if someone sees you as meddlesome, doesn't that change the way that they work with you?  Don't they become more guarded and defensive of their own positions?

So, I'm a "Helicopter Mom".  I know it.  And everyone who deals with me and my children know it.  And I feel I have to be.  I need to advocate for them and therefore I need to know what's going on and what problems they are having.  And, like any parent, I hate to hear of and deal with all of the problems that they have.  But I would like to think that the people who count recognize that I do this out of love for my children and my desire to have them succeed as they grow.  Big Brother is encouraged to go out and stand up for himself.  But he knows I'm there behind him if things don't work out.  I will come to his aid the moment he asks.  And for Ballerina and Music Man, I am stepping in on their behalf for a while longer.

"Helicopter Mom" isn't such a bad title.

Friday, July 19, 2013

The Teeth are Revealed

I wrote this post for Hopeful Parents.  But, since I haven't been here to write anything much lately, I wanted to share it here as well.



This week, for the first time, something happened.  I heard another child say something hurtful about my son.

My daughter has a friend who sticks up for her regularly and makes sure that my daughter is included, even when it means fighting with HER best friend.  And many of my daughter's classmates asked me this school year why my daughter is so "weird" (especially in the first half of the year).  That doesn't bother me so much.....kindergarteners are very open and the only way they will learn and understand is to be taught.  When they asked me this questions (and other similar ones), I always told them the truth -- that she doesn't see things in the same way as everyone else.  That she's just has smart as everyone else, but she thinks differently.  There are some things that she does really well, and others that she has to work at, just like everyone else.  But these aren't necessarily the same things as her classmates.

But my son is more alone.  He doesn't have any friends and he shows no interest at this point in making a friend.  And he spends his school days in a self-contained Special Education classroom.  Whenever someone tries to be his friend, he rebuffs the advances and continues to do his own thing.  Three boys were playing.  It was 2 against one, but it was a water gun fight and sometimes that's just the way it goes.  My son was having fun and was asking them to shoot him again.  So, I just sat back and watched.  The only reason he was playing with these boys is because they were shooting him with a water gun, something that intrigued him.  He wasn't doing anything to harm anyone -- just giving them an easy target.  Therefore, when I heard the words come out of this 5 year old's mouth, a barracuda (in my form) jumped back at him.

I informed the child who said this that he was being "mean" and I used the word "bully".  I also asked him how he would feel if someone said these things about him and reminded him of the "Golden Rule".  And, I informed his mother, as she wasn't there to witness what was said, who promised me she would talk with him about what happened and help to bring home the message.  But as I'm writing this a few days later, I'm still seething.  And I know this probably has happened before but I just didn't see it and that it's likely to happen again, even if it's not the same child.

You see, I know that they other kids make fun of my twins in their own ways.  This is what I'm afraid of.  This is what worries me when I send him to school every day.  This is what I fear is happening on the playground.  My daughter, however, has at least this one defender (and I'm confident there are a few more).  However, for my son, he doesn't see these behaviors as wrong......because I don't know if he even realizes that it's happening.  Because he is so much in his own world, I don't know if he will ever notice it.  He certainly has never told me anything about it.  But him not telling me doesn't mean he doesn't notice.  If he truly is oblivious, I have no cause to worry.....what he doesn't know or understand won't hurt him, just the people around him who love and care for him.  But if he does understand.....and doesn't know how to say anything or stand up for himself......that's the worry.

That's why I have entrenched myself as much as possible in the school.  I need to be able to see (without interfering when it's not necessary) what is happening to my children on a daily basis.  I need to be able to have conversations with their teachers and make decisions for my children until they prove to me that they can do this for themselves.

My son is Autistic.  He was initially diagnosed (at 30 months old) as Severe Classic Autism, but since then has learned many skills that make his current doctor question that diagnosis (she calls him a more severe PDD-NOS).  He only seeks input from his family and his teachers (once he feels comfortable with them -- it takes a while).  His behavior is like a 3 year old (even though he's 6.5 years old).  He is verbal, but I wouldn't call him conversational.  Since language emerged at all, he has always been very echolailic.  You usually have to ask him the same question five or six different times and in different ways before you can really trust the answer.  And sometimes, you need to check up on it.  He loves to repeat things that he's seen and is currently obsessed with street signs so he will constantly tell you what street he wants to be on.  He really is his own person and he does his own thing.  And he sticks out in any crowd that he is asked to join.

Bullying is, in my mind, a natural behavior.  By nature, we are pack animals, seeking out peers and doing our best to fit in.  And, just like with wolves (another pack animal), our nature is to seek out those that are weaker and try to keep them out in order to make the pack as strong as possible.  This doesn't end after adolescence....this continues our entire lives.  But as we grow, we understand to appreciate uniqueness.  We have to teach our children this as well.  In our efforts to put an end to bullying, we need to consider that we are asking our children to change a behavior that comes naturally.  That's what makes putting an end to bullying so difficult.  It can be done.....I truly believe that.  But I don't agree with others who say that we teach our children to bully -- they are programmed that way.  We have to teach them to CHANGE the program.

Things ARE getting better.  Kids are learning about the many others around them that are "differently abled" and are learning to be more patient and sympathetic.  But we still have a long way to go.

Friday, June 7, 2013

Finally......a post!

I know it's been AGES since I've written anything.  It's not that things have been fact they've been insanely busy.  But once I take a little time off from writing, I've been finding it VERY difficult to get back into it.  It's kind of been that way all year.

But I do have to share an AMAZING thing that happened this week.  It's about Ballerina.

For those of you who read my posts regularly, you KNOW how worried I was about her entering a general education kindergarten classroom.  And you know that my worries were not unfounded.  You know how many problems she was having at the start of the year to the point where the school was seriously considering changing her placement to be with Music Man.  Then things started to turn around in mid-October or so.

Well, the school year is about to end.  The last day of school is on June 14.  Big Brother was in the 2nd Grade play, "Going Buggy".  There were 3 performances of the play on Wednesday.....two during the school day for their fellow students and one in the evening for the parents who couldn't attend the daytime performances.  I saw the two during the day and watched both Ballerina and Music Man behave well as audience members.  I was very proud.

Dad was planning on taking Big Brother to the evening performance.  To both of our surprise, Ballerina asked to go too.  We saw no reason that she SHOULDN'T go, so Dad took her when the time came.  When she arrived, Dad started sending me texts and pictures.  She immediately found her classmates with older siblings in the show.  She ran over to them and gave them a GREAT BIG hug!!!!  And they played together until the performance started.  They were running up on stage (before the show) and just having a BLAST!!!!!

And when the performance started, she sat down with Dad to watch.  She stayed there quietly for a while, but then decided to sit on the floor in front.....with her FRIENDS!!!!!!  Her behavior was near perfect.  She just decided she would rather experience this moment with her friends rather than her Dad.

This year has been AMAZING for her.  Not only has she done well academically (her report cards are more than acceptable) but she has really started to understand the mechanics of social interaction.  She WANTS to be with her peers rather than her family.  She WANTS to play games (Red Light Green Light being her current favorite).  She loves to "hang out with the girls".  All of these things that I really never thought I would see with her.  I still see no signs of it in Music Man, nor do I ever really expect to.  But with her, it's so nice to see her looking like EVERYBODY else!

I know that people say that you shouldn't work on blending in when you were born to stand out.  And that's all well and good.  But it also puts you at risk for other problems down the road, such as bullying behaviors.  Sometimes, it's good to be part of the crowd.  I still want to see her be her own person.....don't misunderstand me.  But I don't want her to feel alone.  I want to see her fit in with those around her.  And I want to see her achieve success with everything she does.  And it really looks to me that she is on that path right now!

Friday, April 5, 2013

A Quick Post.....

I just want to share with you some of the things that I've been doing this month.  Hopefully, I'll write a longer post in the next few days going into more detail of how I'm spending my Autism Awareness Month, but here's a short view.

First of all, this is the video I made.  It was supposed to be done AGES ago, but I just haven't had the time or the oomph to get it done.  But I got it done in time for World Autism Awareness Day.  Please feel free to share this with others!  I want everyone to see that Autism isn't such a horrible just is.  But it something that needs to be understood and accepted.  Ignorance helps no one.

Secondly, I contacted Parents Magazine's goody blog shortly before the start of the month.  I wanted to know if they were doing their Voices Of Autism again this year like they have for the last couple of years.  They told me that they weren't but they would be happy to accept a story from me.  And here's what I sent them.  My story was published today.

So, that's it, in a nutshell.  I hope everyone is having a good start to Autism Awareness Month!

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!

Wednesday, February 27, 2013

Answers.....or More Questions......

Things with Music Man have been falling apart since the start of the year.  Well, it started earlier than that, but it's come to a head since the return from Winter Break.  I had discussed with his developmental pediatrician back in October about the possibility of introducing Strattera and beginning the process of medicating him, but I was opposed to the idea.  The reason she suggested this particular medication was because of how it helped children cope with Anxieties in addition to attention issues.  But nothing was severe enough to justify medication.

Now they are.

Every day when Music Man's teacher would walk him to the car, there would be another story.  He had a serious breakdown because of this.  He's obsessing over the elevators.  Things were so bad walking past the elevator in the school to get to Music special (he also has to walk past it to get to Media [aka Library] and Computer Lab) that they had to take him out of the school because he was just so bothered.  He screamed to the point where he was emptying the school office and teachers were coming out to find out who was so upset and why.  And all because he had to walk past an elevator.  And now, earlier this week there was a fire drill and he's starting to obsess about that.  Elevators are getting under control.....he's found his new obsession.  He won't remain in his seat and attend to any of his teachers (regardless of the motivation).  He has his rote skills but is having a hard time growing further because he can't attend.  Elopement into the other kindergarten classrooms is a problem.  He's showing no interest in interacting with his peers.  We have taken so many positive steps forward.  Now it feels like every day we're taking steps backwards.

This needs to stop.

This resulted in me calling for an IEP Meeting (which took place today).  This is the first time I felt I needed to call for a meeting because of a problem for more than a few minutes (there have been times where I considered it, but never to the point where I actually sat down and wrote the email).  When the packet of information came home with what had been going on, it was simply HUGE!  There was a new (proposed) behavior plan.  I realized my suspicions were right....his teacher by telling me all of the problems in the classroom, was hinting that we needed to get together.

I'm happy to report that it wasn't all bad news.  Some of the strategies that they've been implementing have been successful.  But it looks like he needs more than just strategies to cope......there's something not right biochemically (I believe).  Autism does not necessarily require medication, but when the consequences of Autism (such as ADHD, OCD and Anxiety) come into play, you need to consider your options.  I never told our doctor that I WOULDN'T medicate him.....I just didn't feel it was right when we were there in October.  Now that it's late February, I realize that the time has come.

We see her next week.  We'll find out what she has to say.  But now, I have some more information to share with her.  I have the behavior reports and the progress reports from his IEP and his teachers.  It's time to discuss what we need to do to help my son.  Medication has helped Ballerina to succeed.  Now we need to consider what we need to do to help Music Man succeed as well.

There's too much potential there to allow his anxieties to cause it to all go to waste.

Tuesday, February 19, 2013

Repost: It's The Little Things

This is a post I wrote for my monthly posting on Hopeful Parents.  However, since it's my own work, I thought I'd post it here because (1) I haven't posted in a while and (2) it just seems like it belongs here as well.  And it sums up a lot that I've been going through these past few days.


On Friday afternoon, I stepped outside to take Big Brother to his gymnastics class.  There was a very pleasant smell someone had lit a bonfire or just simply a wood fire in their fireplace.  Being a bit of a flame-o-phile, I took in a deep breath before starting to pile my children into the car.

Then I heard the siren.  And it was close.  And I suddenly realized that the smell of this fire that I was enjoying smelled like it was right on top of me.  If it was a bonfire or a fire in a fireplace, it would have to be a distance away....but this one wasn't. I saw a neighbor outside and said that that it sounded close. He pointed behind me and I saw the smoke pouring out behind another neighbor's house.

 photo 0857B8F7-57AC-49B9-B37F-A7A99F53C8F6-10248-00000A470A527528_zps12aa60af.jpg

Later that night, I read on Facebook a comment that the house was burning again.  I responded to the post and sent the writer a private message and learned that the house was for a fellow parent of a few children who attend the school my children attend down the street.  I know this Mom for she is a fellow volunteer at the school.  She lives in this house with her family, including 5 children.  My heart simply broke.

Fortunately, no one was hurt.  The mother was out when the first blaze occurred with the two younger children and the 3 older kids were able to get out of the house without injury of any kind.  But by the time the second blaze was out, all of their possessions had been destroyed or damaged beyond repair.

What if this had been MY family and MY house?  It was a regular fire, believed to be started by a clothes dryer.  Our dryer is running almost daily.  Two of my children are Autistic.  If we were in this situation, would they panic?  Would I be able to make sure they got out of the house safely?  What about my dog?  And what would I do if, assuming we all did get out without injury, if I were to lose all of the items that mean so much to me?

Some of the parents from our school and neighborhood have been doing all that we can to help this family get through this difficult time.  We are setting up some home cooked meals to be delivered to them at the hotel where their insurance is providing to them.  We are also donating food, clothing, and toys for the children as well as gift cards to some local stores so they can get through these next couple of months until their home is ready for them to move back in.  I'm one of the organizers.  People keep thanking me for doing this.

But I am not doing this just to help a neighbor or a friend.  I'm doing this because I'm a human being.  I'm doing this because, G-d forbid, if I was in this situation, I would want someone to do this for me.  I would want someone to help me figure out how to shoulder some of the burden.  I would want someone to help make my life seem a much happier thing than what I'm sure I'd be facing in my own mind.

I'm not an altruistic person.  I'm a selfish individual.  But sometimes, when the situation arises, they are one and the same thing.

Monday, February 4, 2013

Brief Summary

It's been a week or so shy of 2 months since I've posted anything here.  It's not because I've been avoiding this blog.  In fact, I've probably written about 3 posts that just never made it to the Publish stage because they just never felt right.  It was a combination of writers block and just having too much to say plus several other things.  And now, I find myself feeling so rusty, I just don't know where to start.

So, I'm going to just jump right in.  I'm going to list out some of the things that have happened since my last post here.  Some of these may be expanded into full-blown posts in the near future.  But at least I'll have gotten something written and can hopefully get back to my regularly scheduled postings.

So, here we go......

(1) Ballerina's IEP Meeting.  This was simply a follow-up from our meeting in October.  We need to determine if the adjustments to her placement plan were in fact working and what (if anything) needed to change.  All together, this meeting went really well.  She is progressing very nicely and we decided that we were going to leave everything alone and meet again in May for her annual review.

(2)  Holiday Break.  This, unfortunately, didn't go as well as we would have liked.  Starting the week before the break, some unwelcome viral bug decided to pay my household a visit.  It started with Ballerina and Big Brother.  Then it spread to Music Man and Dad.  Then, back to Big Brother and Ballerina.  Eventually, some version of it attacked me.  Finally, after 6 weeks, I think we're all doing much better.  For the record, none of us were really SICK.....just grossly under the weather.  The kids and Dad all suffered from mild fevers and we all had colds.  Big Brother was eventually diagnosed with strep, Music Man with his first (and the first for ANY of my kids) ear infection, but otherwise, all was reasonably normal.  But being sick during vacation is never fun, especially since it involved some travel to visit grandparents.  The trip went well, but no one was able to enjoy it as much as they should have because of the way they were feeling.

(3)  Return to School.  This was really quite uneventful.  It took a day or two for everyone to get back into the routine, but it happened reasonably seamlessly.

(4)  Rachel is officially a Daisy Scout!  On January 10, Rachel was officially sworn in as a Daisy Scout.  She had to recite the Girl Scout Oath and Promise and she received her official pin and the start of her Daisy emblem.  She will be working for the remainder of this year and next to earn all of her pedals.  This is the first of the many levels of Girl Scouts of America.  I don't know how long she will remain active with the organization, but for now, she's there and she really seems to be enjoying spending time with a group that is ALL GIRLS!

(5)  The Twins' Birthday (and Party).  This will likely be an upcoming post.  On January 12, Ballerina and Music Man turned 6 years old.  We celebrated with a small party at school the Friday before their birthday and then a party at The Little Gym, where Ballerina takes gymnastics classes.  Overall, 18 kids attended the party and they all seemed to have a great time.

The rest of the time has been just plain normal stuff.  And just not being able to sit down and write.  The cold (or whatever that bug was) has definitely played a HUGE part in my silence.  Often when I sit down to write, I try to put a positive spin on things, while still being 100% honest and accurate.  My mood and attitude has been so poor these last few weeks, I just haven't really WANTED to be positive, but just wallowing in my own misery.

But now I'm back!