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.

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Happy Birthday!!!!

Today is my birthday.

When I was growing up, birthdays were things I always looked forward to with such relish.  It wasn’t unusual for me to stay up to 12:29am (my actual birth time) to be the first to wish myself a Happy Birthday.  As I’ve gotten older, that anticipation has lessened quite a bit.  Especially after I cross decade marks.  But now, I’m 41 years old.  I’m happily married with 3 wonderful children and a dog.  And I spend most of my time doing what I can to make their lives as wonderful as possible.

Birthdays have become days to think about where I am and where I want to be.  What I have been doing right and what needs to change.  There are always many things on both sides of that equation.  For example, I need to work on controlling my patience and not just handing over phones when the kids get to be too much.  But I applaud myself for developing new strategies that have helped Ballerina and Music Man make this transition into kindergarten, at least from the at-home-end.  I applaud myself for listening to their teachers and fighting for what I know is right, even if that wasn’t an easy thing to do.  I applaud myself for teaching my son that lying is not tolerated, a lesson that I believe Big Brother has learned quite well these last few weeks.

Over the last couple of years, I have used my birthday as an opportunity to make a change.  A couple of years ago, I proclaimed myself a “Parent Advocate”.  I’m still not sure what it means (officially), but I feel I have done a decent job at making that change effective.  The Autism-based Facebook Page that I run has grown to over 2,100 members.  When people ask, I offer my advice based on my personal experience.  I have answered questions for other friends who have asked.  I have educated many about Autism, and plan to address Big Brother’s Wolf den (Cub Scouts) to educate them about Autism as they are likely to run into individuals affected as they grow.

And I fight.  I fight for my children.  Every day.  I make sure that they are getting the services that will best help them.  I lose sleep over IEP meetings because I want to be sure that they have the opportunity to succeed and gain their own independence.  I have learned to not jump to conclusions (even though that is still my instinct) and to listen before I act, at least in an official capacity.

When I was at my brother’s wedding, several family members asked me if I planned to go back to work.  My answer was always that I kind of already had with this change.  I would like to find a way to actually be paid for doing this (like everyone, we can use the supplemental income), but because my experience is not something that comes from a degree other than in life, I’m not sure that I can find a position right now.  I want to help parents, especially parents who are in the early stages of a diagnosis. Parents who either suspect or have just been told that their child is on the spectrum.  I want to help them to see that it’s not the end, but the beginning.  I want to help them to see the POWER of that diagnosis.  I want them to understand that Autism is NOT the end of the world, no matter where on the spectrum a child falls.  I want to point out the success stories that you can find anywhere, but is somehow very difficult for a grieving parent to see.

You see, I’ve BEEN that parent.  It took a long time before I was able to see the positives of Ballerina’s and Music Man’s diagnosis and not just going through the motions.  And I know that the fears never fully go away.  And because of it, those are the people who I feel I can most benefit.  I still have to figure out the best way to make that happen, but I’m more sure than ever that I have found my “professional” calling.

If anyone has any suggestions, I’m all ears!

Happy Birthday to Me!!!

Today is my 40th birthday. And what a day it’s been. A day of meetings. A day of activities. And a day of reflection.

It was a year ago today that I first announced I wanted to become a parent advocate. I still don’t fully know or understand what that means, other than trying to help other parents find the best solutions for their children and help them achieve placements allowing them to get them into these programs. Well, I don’t know how to do that, but I spent the year giving my advice to people who are trying to find solutions. And I hope I did it in such a way to give them the tools to help them find what they need. And MCASA (Montgomery County Autism Society of America) has allowed me to put the phrase “Parent Advocate” on my business cards based on the information I provided them with regards to my activities. So, I would say I have successfully achieved that goal. This is what I thought about when I found a few minutes today.

But that’s not what today was about. Today was about being busy doing things for my kids. It was about being a Mom to 2 children with autism and their neurotypical very busy brother. It was about making sure that I was able to give them everything I could.

The day started with spending much of the morning in my Daniel’s first grade classroom. I am typically there on Tuesday mornings, giving the teacher an extra pair of hands. The kids are engaged in independent learning and I help answer their questions or help them figure out how to do their assignments. It’s quite fun and I look forward to seeing them progress as the year goes on. I spent most of my time today working with one child in the class and hope that he will benefit from that one-on-one work. And doing this had another benefit — it gave me something to think about before heading over to what was worrying me most about the week. Rachel’s IEP Meeting.

Because when I left Daniel’s classroom, that’s where I headed next. I ran home to let Domino run around the backyard and grabbed a quick lunch at home before heading over to Rachel’s school (but of course made a quick stop at Starbucks for a Pumpkin Spice Latte on the way). And I arrived there about 10 minutes early. That’s when the nerves really kicked in. I knew 4 areas that we needed to address……(1) OT (Occupational Therapy) — she really is quite behind here and refuses to do any art projects with me including basic coloring and even when she DOES do this, it’s rushed and her grip is more of a grasp rather than the pincher grasp that she needs to have. (2) Her behavior issues at home (specificially, her violent tendencies towards Daniel when Simon gets upset) even if this is difficult because they don’t see this at school. (3) Her integration into pre-K. This has (temporarily) been put on hold, but there are 3 children that are doing this and they will be continuing to practice until the pre-K class is ready to resume for these kids. This is expected to resume on November 1. (4) Kindergarten placement.

Overall, I think we had some good answers for these questions. They didn’t see as much of a problem as I did with the OT, but that’s because Rachel is willing to do these things at school. They gave me some ideas how to get her more willing to do these tasks for me, and they did make sure that the OT goals were comprehensive. They also don’t see the behavior issues I described, but they did listen and will try to incorporate some lessons to help her in these areas.

The only one of these 4 that I was disappointed with the results was the question of her kindergarten placement. I was hoping they were going to make a preliminary placement decision for her. I realize it’s too early in the year to make a definite placement decision, but I’m concerned about there being space in the program I desire for her if we don’t, for lack of a better way of phrasing it, reserve her spot for next year. They however, informed me that they will find room for her in the closest location for the program that she is assigned. I REALLY want to see her in our home school with opportunities for integration with typical classes and I really want her to be with this particular teacher. I need to figure out how to make sure that happens. Right now, I’m not sure how best to do that, or if I’m sitting here worried about nothing.

But I survived her IEP Meeting.

I even survived picking up the boys from their respective schools, even through a pretty significant Simon meltdown.

There’s still one more parenting event left today…..taking Daniel to his nature walk with his Tiger Scout Den. He is looking forward to this, even though I’m not. And it went reasonably well….the kids all had fun and the walk was short and sweet (and a bit dark). They discussed what they saw and I just looked forward to getting home and having no more responsibility for the day.

So, tomorrow I can relax. Tomorrow I can sit back and enjoy coffee with a friend. Tomorrow I can celebrate. Today, I was what I always wanted to be….A BUSY Mom!!!!!! What better way to spend my 40th Birthday!!!!!