It’s Been A While….

…..I know…..I’ve said I was going to write more consistently and I haven’t.  I make the same empty promise today.  With the summer, perhaps I can manage to keep it going for more than a couple of posts.

 

Today I had a Mommy Moment.  My first born had his first graduation.  It was from elementary school and he will be starting middle school in the fall.  Moving from 5th grade to 6th grade.  Really not much of a change.  About 2/3 of his grade will be moving to the same school.  But there is something about a child leaving elementary school that seems to have had an effect on me.

 

Yes.  I cried during the ceremony.  I have spent a lot of time in that school these past 6 years (and will continue to do so as Rachel and Simon will be there for another 2 years).  I have watched Big Brother grow from a kindergartener through the ranks.  And, unlike his brother and sister, he always seemed so grown up to me.  He still does.  I think of him as a middle schooler already, and I probably have thought of him that way for a while.  But now it’s real.

 

I listened to the teachers make their speeches.  I listened to both staff and students speak of the school mantras (“Respectful, Responsible, and Determined Learners”; “Getting Better Every Day!”).  And I realized exactly how much my son has learned these last 6 years.  I realized how it’s not about the academic skills that I send him to school to learn…..he can learn those anywhere.  It’s about the interactions he has with his classmates (the positive and the negative).  It’s about his learning how to handle situations with grace and to learn when it’s appropriate to ask for help versus when I need to let him fend for himself (and we have had some of both during his time there).  I watched the Fifth Grade Olympics (a fun day for the students — used to be a carnival day) and watched how he and his classmates were supportive of one another.  I watched them cheering not only for their own team, but for their opponents and helping them along the way.  They always tried to win, but they all understood that winning or losing isn’t the most important thing, but sportsmanship and acceptance are where the real skills lie.  It’s more important to be a good person than to win the game.  This is something I can tell him at home, but at home they are empty words.  In school, they are viable skills that he will use throughout his life.

 

I look forward to seeing what his next academic adventure will be.  New experiences await him and opportunities that I am still completely unaware of will present themselves.  I can’t wait to see what happens next in my parenting journey!

 

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Going Stir Crazy

The title for this blog (overall) is very appropriate right now……I think my entire family is going NUTS!!!!  The kids have been home for a week now with no scheduled activities (schools are closed, activities have been cancelled, etc).  We have been mostly in this house (or clearing snow) for that long!  Dad finally made it back to work today (and I think he’s just grateful to get away from us all) and dance for Rachel will start up again tonight.

 

But we got just shy of 3 feet of snow during “Snowzilla” (as they are calling it…..or Winter Storm Jonas).  Several area schools are already closed on Friday and I expect we will be closed as well (making it a week and a day of no school (with one teacher work day in there so it doesn’t count against our allotment of days off).  The roads have been bad enough (hence closing schools for this long) that I only want to go out when it is absolutely necessary (needed to do a grocery store run, took the kids sledding yesterday).  So, it’s been a lot of hanging around.

 

Does it sound like I’m rambling?  Well, that’s because I am.  I’m going CRAZY here!  I started my job (this was SUPPOSED to be my second week) but I’ve not been able to go in (yeah, great impression I’m making…..but they knew before I started that kids’ schedule trumps when it comes to availability).  I’ve been texting or emailing or calling people to make sure that what I’m supposed to be doing is either covered or messages are delivered to the affected people that I can’t be there.  I will write more about the job in another post.

 

But at least we snuck out yesterday and did some sledding.  Dad and I realized that Big Brother would be rightfully VERY upset if this HUGE snowstorm passed and he didn’t get the chance.  We found a great hill a few years ago, but that is no longer available to us (as they’ve planted trees every 5 feet), so we had to go looking for a new one.  We found a good contender (not sure if I’m fond of it…..you have to walk a ways [in the snow, and I don’t have snow boots] to get there from where you park) so I may want to continue searching.  Rachel (who always enjoyed sledding before) decided she didn’t want to do much, but she watched.  The boys on the other hand…..they had a blast!!!!!!

 

 

 

Time will tell if I survive the rest of the week!  But for now, farewell from the insane asylum (otherwise known as my house)!

 

-Ilene, your crazed blogger

Realizations…..

Off by a few days of my promise to blog weekly, but MUCH better than last year….

 

Over the weekend, a friend put me in touch with a local someone who just learned that their son was on the spectrum.  We have since friended each other on Facebook and I offered myself as a parent who knows what she is going through and if she needs and ear or a shoulder, I would be there.  I told her (through our mutual friend) what I’ve told others……she needs to take a moment to catch her breath and then get ready to jump in with both feet.  I mentioned to her that it’s a scary word (Autism) when you first hear it with regards to your child, but once the initial shock wears off, it’s surprising how normal everything is.

 

I still think back on our trip to Disney World in Orlando, FL just after learning about the twins’ ASD diagnoses.  We left only 2 days after I was told and I remember thinking that this trip couldn’t work and that we were just going to make ourselves crazy.  But it did work.  It went AMAZINGLY well.  Yes, there were moments, but we were able to drive 14 hours to get there (and then back at the end).  We spent 7 days in the parks.  And we were all over the Disney properties.  That trip made me realize, more than anything else, how well we already knew our 26-month old twins.  We knew about their “quirks”, even though we didn’t realize that there was a diagnosis that went with it.  And our trip accommodated for many of these.  We swallowed our pride and got them leashes (oops, I mean animal backpacks with parent handles) so they could walk around without wandering off, which we knew they were prone to do.  We scheduled meals so that their routine wouldn’t be compromised by being on vacation.  All the little things that were just right for us to do, we did, even before seeing the doctor who told us specifically why they were so “quirky”.

 

It wasn’t until we had been back for a while that I realized this.  When we first got back, I was so caught up in “your kids are Autistic” that I couldn’t see anything else.  But over time, I realized that our kids are still just OUR KIDS.  The same kids we planned for on that trip.  The same kids we planned everything out for because we knew they needed to keep their routine or we would be dealing with tantrums the whole time we were down there (which only happened VERY rarely).  I think it was when I made this realization that I started thinking we could do this and that we weren’t as lost as it felt when the news was dropped on me (because I was the only “parenting adult” in the room during that doctor’s visit).

 

Fast forward nearly 7 years later (in March).  We have had our good moments and our bad moments.  We know how to recognize an “A-Moment” and when it’s right to intervene versus allowing it to burn out.  We’ve learned the differences between tantrums and meltdowns.  And there are some activities that have come up which we’ve chosen to not partake in because of their diagnoses (didn’t think it would go well and decided not to risk it).

 

But they are both in school (3rd grade).  They are learning the full curriculum so that they can graduate high school and go to college, should that be the right decision for them.  They go to Sunday School and are learning hebrew to prepare for their Bar- and Bat-Mitzvahs (which may be at age 14 rather than 13, but that’s a decision to be made later).  They both take dance classes and Rachel is on her studio’s competition team.  Simon is a computer whiz and finds himself in all sorts of trouble because of it, but he does it deviously and with a smile on his face.

 

If I’ve learned nothing else, I’ve learned that an Autism Diagnosis isn’t the end.  It’s just giving you a name to something you already know is there.  And it gives you power because you have that piece of information that you need to ensure that your child can find appropriate services. But the things that really matter….the children themselves……they don’t change a bit.  They are EXACTLY the same!

Looking Back and Ahead

Brief synopsis (since this is a long post):  2015 was good.  It was the year where I learn to take care of myself as well as my family.  The big goal of 2016 is organization.  By the end of the year, I want to be able to keep track of the whens and the wheres and the whos.  And I want to be comfortable doing it!

 

2015 is over…..2016 is just beginning.  As an attempt (again) to get back into “blogging”, I thought I would do a brief posting about what has happened in the last year and what I would like to see happen in 2016.

 

2015 was (overall) a good year for me and my family.  Most importantly, we all maintained good health.  That was something of a focus for me last year.  I wanted to spend time making sure I was healthy and learning what I needed to do to maintain good health beyond 2015.  I started seeing a health coach in February and saw her twice a month for six months.  And overall, things really did get better.  My energy was up and my weight going down.  I bought myself a FitBit so I could better track my activity level and sleep quality (which I really wish was better).  And I started making an effort to spend more time doing exercise.  I also began eating healthier.  I discovered kale which I really like and actually found salads that didn’t want to make me gag (no, I’ve never been a fan of salads).  I still love my mushrooms and try to minimize the number of carrots I eat, but give me kale, avocados, peppers, mushrooms…..I’m a happy girl!  And with the start of the new year, I plan on experimenting with winter squashes too!

 

I finally addressed the edema issues I have with my legs.  This started while I was in college (spraining my ankles continuously wasn’t helpful) and got considerably worse while I was pregnant with Big Brother (and even worse after my twin pregnancy).  I had reached the point where I couldn’t wear sneakers because I couldn’t find anything that would fit without causing me pain, which made it very difficult to do any exercise (one of the best things to do to combat edema).  And I know that the edema was a contributing factor in my bout of cellulitis a few years ago which had me down and out for weeks!  But I’m Mom…..Mom doesn’t take time to take care of herself but spends her time and energy caring for her kids (and sometimes her husband).  But I couldn’t risk that happening again.  So, I had my first physical in I-don’t-even-know-how-long.  I went for daily edema therapy (Monday-Friday) for approximately 6 weeks and walked around with 4 ace bandages compressing each leg (and a boot that people wear to protect casts that slipped off my feet every 6-8 steps).  Since then, I’ve been wearing compressing stockings during the day and tight wraps every night.  The goal here is maintenance.  There is no “cure” for edema but with exercise and continued compression, it’s livable.  Right now, it’s still annoying, and I suspect I will be repeating the process again later in the spring, but for now, maintenance is sufficient.

 

But the driving force behind all of this……our trip to Disney World!  I know I haven’t blogged about that here…..I need to do so early in the year.  I’ve been waiting until we finished going through the pictures.  But we went in mid-November for a week and it was our first REAL family vacation (without any obligations for anyone besides the 5 of us) in over six-and-a-half years!  We did a lot of walking and a lot of eating and we all had a lot of fun!  Rachel was made up to look like a princess on our first day and we were able to keep it together for the entire visit!  I WILL post about the trip (after the fact)…..I just have to put everything together so I can include some of the better pictures!

 

And of course, you can’t forget the things that the kids have done.  Rachel and Simon are now going to Sunday School and learning hebrew and Jucaica traditions (Big Brother has been going for some time).  The twins both continue to do well in school and are making progress.  I wish the reading comprehension was better than it was, but we continue to work on it and do what we can to address the problems that they have.  Otherwise they are at or near grade level.  They have given up trying to teach Simon penmanship and allow him to work on the computer or with a word processing device or use a scribe when neither option is available.  However, they still try.  They are just not hopeful that he will ever have legible writing or the ability to effectively express himself while putting his thoughts to paper using a pen or pencil.  And Big Brother has surpassed our expectations by announcing to us this summer that he wants to attend a magnet middle school.  So during the fall, he completed the application to the local magnet school and took the test.  He also applied to a specialty school where his entrance would be determined by a lottery.  This one would be more complicated if he were to get in because they don’t provide transportation and the school isn’t exactly local, but we will determine how best to handle this situation should (1) he get in and (2) we decide it’s the best placement for him.

 

But like I said, 2015 overall has been a good year!

 

Now, onto 2016.  This should be a very busy year for our family.  Here are just a few of the things that we have “planned”.

 

(1) Job.  Yes, I said job.  I am hoping to get a job outside the home.  Not a full time position.  Just 15-20 hours per week.  I found a place that I think is a good fit and I have been volunteering there for a month or so and I hope that they feel the fit is as good as I do!  But hopefully, this volunteering will become a paying position early this year and we can have that second income that will certainly help with things around here.  Also, it will get me started on a career path as this position is completely different than what I was doing before.  Stay tuned for more information and whether this comes to fruition.

 

(2)  Big Brother’s education.  At the end of January, we will be learning of Big Brother’s Bar Mitzvah date.  This is a rite of passage for Jewish boys (Bat Mitzvah for girls) that happens on or around their 13th birthday (or at a different time if felt it would be more appropriate).  He will be turning 11 in April and it takes a bit of time to prepare for such an event (he will basically be leading a Saturday morning service and reading from the Torah and Haftorah for the first time).  So, sometime approximately April 11 2018, this will be happening for him.  Also, and more immediate, we will be learning what middle school he will attend.  In February, the results of the magnet selection process (including the consortium schools) will be released and we will know whether he has qualified for either of the schools he applied worked in his favor.  Then we have to make the decision of whether these programs are best for him or if he should remain in the general education programs (which is also a good option).  But he is excited about it either way.  And he is VERY excited to be preparing for his first graduation from elementary school in June!

 

(3)  Organization.  This is a problem for me since I stopped working.  I will admit….I’m hoping that, with a job, this will come back a little more naturally as I will have to find that balance between work and family.  I need to be sure to find the time to take care of my family AND of myself and not allow things to slip through the cracks.  I would like to find ways to keep myself in better physical shape and getting more exercise as well.  But in order to do that, I need to find the time in my days, which is always a problem.  That’s where the “organization” comes in.

 

(4)  Return to writing.  Everything seemed better in my life when I’m blogging.  It doesn’t solve any problems, but it helps me to directly see what is happening and keep myself on track.  It helps me to see the progress that we are making as a family and that I’m making personally in my own journeys.  At least once a week, I would like to sit down and the computer and “blog”.  Sometimes the posts will be stories of things that have been happening with the kids.  But these weekly posts are for me to keep myself grounded.  Posts like this.  Just a chance to say what I’ve done this week and where I need to go in the week coming.  This will help with Goal Number 3 and will hopefully prevent me from bumbling ideas in my head.

 

So…..long winded post here……but a plan.

 

Long story short.  2015 was good.  It was about trying to get my health on track and learn to take care of myself as well as take care of my family.  2016 is about getting organized.

Something I Really Need To Say

When Rachel was in kindergarten, one of her classmates came up to me and asked me, “Why is she so WEIRD?!”. At the time, I felt my face grow hot and I was angry at this other kid, his family, and everyone around us because how dare someone have the gall to come up to me and say that my kid is “weird”?

But that feeling only lasted for a moment. Because I realized that this kid was right. My daughter was “weird” as seen by this kindergartener. She doesn’t do things the same way he does. She looks different than he does (happened to be an african american boy). She is a girl whereas he’s not. And what other way does a kindergartener have to express himself but to ask a question using a fairly simplistic word? He asked this question with all of the innocence of a young child. He wasn’t accusing her of anything. It was genuine curiosity. He wanted to know why she reacted so strongly when things didn’t work out the way she envisioned. He wanted to understand WHY she would get upset and not be able to calm down with just a moment by herself in time out as he could do. He was Inquisitive. And he wanted to Learn. He wanted to Help.

Fast forward 4 years later. Rachel and Simon are now in 3rd grade. And I’ve had quite a few kids ask me questions about their behavior. I have spoken with both their Sunday School class (last year) and with Rachel’s girl scout troop (just last month) discussing what Autism is and how sometimes, because of the way they perceive things, they can sometimes act differently than one would expect.

Since that kindergarten moment, I refuse to allow myself to be upset by someone asking questions about my kids asking me why they are the way they are. And it doesn’t matter how old the questioner is. I wish that more adults would realize this when they come across a child that acts differently then one would expect (although I would appreciate a much nicer form of asking this question from an adult). Because this is always a learning opportunity. We don’t stop learning when we collect our diplomas. We learn something every day.

Yesterday, I spent some time with a few adults with special needs. I realize that one day this could be one or both of my twins….people trying to find out how they fit in the world and needing others to help them maneuver their way through various hurdles that others handle with ease. And I realize the only way for them to be successful is for them to know that people around them understand them and appreciate them for who they are and the things that they can do. I don’t know what that will be (yet) for them. I don’t know if this will ever be them. But I hope that anyone who took the time to read this will always know that they should feel comfortable asking questions from those who may know something about special needs families and be willing to learn of what they can do to make things easier for everyone!

Dance Recital, 2015

I know I haven’t talked about it much since moving my blog to wordpress and changing the name and the focus.  But one of the biggest activities in this house (second only to soccer, maybe) is dance.  Rachel has been taking dance classes for 4 years now (ballet, tap, and this year we added hip hop) and Simon has been taking classes at the same studio for 2 years (also ballet and tap and this year he joined the same hip hop class as Rachel).  I had a very hard time finding a program that would take them, for most local programs refused to get back with me when I mentioned the “A” word.  But (and I know I’ve told this story many times), fortunately for us, my neighbor was just starting a new studio and after a conversation with me, agreed to offer a Special Needs Ballet/Tap combo class on Saturday mornings.  Simon has been in this class the last two years, and Rachel did this her first year (when she was placed in GenEd Kindergarten, we felt that she would do better in a general class, but were prepared to go back should she not succeed).

Much of our focus over the past week has been dance.  The recital was on Tuesday and there were a few things leading up to it.  There were pictures, the dress rehearsal and the performance itself.  This is the first year that we were doing multiple performances (Rachel was in 3 dances, Simon was in 2 [one of which they shared]).  For the first time, I had to deal with costume changes and hair changes behind the scenes (something that I suspect I will become VERY familiar with over the next few years).  It was a bit harried for me, but everyone was always ready on time!

Here is the “playlist” of all 4 routines recorded during the dress rehearsal (not allowed to take pictures of any type during the performance itself).  During the actual recital, Rachel slowed herself down so she wasn’t rushing quite so much (especially in her tap routine) and Simon did pretty much the same thing.  Now, for Simon, you need to understand that last year he refused to go on stage.  Our goal for him this year was to go on stage and make a minimal effort.  As you can see, he surpassed those goals!  I hope it brings a smile to your face, as it always does to mine!

Preparing for a change

Brief disclaimer before I begin this post:  This is the first time I’m using this blog (including as it’s former title) as a means of gathering information and advice.  So if you are going to comment, please be constructive in pointing me in the best direction for me to take.

School-changes

Yesterday, word came down that our elementary school principal received a promotion.  He will now be the principal at our local middle school.  I’m very happy for him….I know he’s wanted a promotion for a while and he has earned it.  But this leaves me in a bit of a situation.

You see, the twins are starting 3rd grade this year.  At our school, 3rd grade is a year of big transitions.  Their classrooms move to the second floor; their class size increases (in general education classrooms) by reducing from 4 classrooms to 3; and the curriculum becomes more and more demanding.  Rachel is in a general education classroom and receives assistance from paraeducators and other accommodations throughout the day so she can be successful (I have no new concerns over Simon’s education for next year).  Overall, after a very rocky start at the school when she entered kindergarten, she has done VERY well.  And I credit the entire team working with her (including myself and her) for much of these successes.

Next year, it feels like we are now losing EVERYTHING.  Her IEP is still in place and the accommodations will continue.  And I really don’t question the school’s ability to comply.  But of the 11 school years we have had in this school (across the 3 kids), Big Brother’s 3rd grade year was the only negative experience we had.  We had issues with the teacher practically from Day 1 that, eventually, required me going in and speaking with the principal about a situation happening in the classroom.  When preparing for next year, I went to the principal and discussed my concerns related to this teacher and made it VERY clear that Rachel MUST NOT be placed in her classroom.  Big Brother is a very different student and was able to bounce back when his academic situation changed at the start of 4th grade.  I don’t have the same confidence in this ability in Rachel.

Prior to speaking with the principal about this, I addressed this issue with Rachel’s classroom teacher AND the caseworker who has been handling her since she began at this school.  They both understood my position and were very supportive and facilitated things so that when I met with the principal it would be a successful meeting.  And when I left his office, I felt good about how things were going to go and was much more relaxed and confident that at least this issue would not cause problems at the start of the year.  Her entire team was on my side and her success at the school would continue.  We would address any new issues that came up as needed, just as we have done since she entered kindergarten.

Since this meeting, I learned a few things.  (1)  Her 2nd grade teacher will NOT be returning to our school next year.  This means that, once a classroom is assigned to Rachel, her new teacher will not have the opportunity to discuss any potential issues with her former teacher and will be starting at Square One.  (2) The caseworker that has been working with us and has really been Rachel’s best advocate directly in the school has retired at the end of the last school year.  She is the one person who really saw the development from the hysterical child who was nearly carried into the school on her first day of kindergarten to the student that she has become.  She was part of the solution of every issue and really was on top of everything to ensure that Rachel was getting the most out of her school experience.  I’m very happy for her, but she will definitely be missed!  (3) Yesterday, I learned that the principal is leaving.  He may not have been involved as directly with her school experience, but he managed to touch on everything happening in the school.  And he was the one who chaired nearly all of her IEP meetings and was always a vital part of the discussion when making plans for her success, especially every time we were making a change.  And, as I mentioned, he was the one who I spoke to about her classroom placement next year (which, fortunately, I have in writing per his request that I can bring up should it be necessary).

I have been working with the PTA since Big Brother entered this school in kindergarten (he will be in 5th grade in the 2015-16 school year).  One of the reasons I wanted to get involved (not the only one though) was so I could get to know the administration of the school and have the ability to address issues in the twins’ education experience and have, so to speak, the principal’s ear.  Now I’m worried that my first real contact with the new school principal will be of a hysterical parent insisting that her daughter’s classroom be changed (if she is placed with the teacher that Big Brother had).  I can’t allow that to happen, and I will be that hysterical parent in his / her office if necessary, but that will weaken my position down the road when I want the new principal on my side.

So, here is my question and seeking advice…..what is the best way to handle this SHOULD the worst thing happen (Rachel being assigned this teacher)?  And how do I quickly establish a positive rapport with the new administration, whether this happens or now?