5am reflections

I can remember when I started getting up at 5am on school days.  It was the waning days of Sam’s middle school career, in May or June 2015.  It was one of the those times when the stress in the house was thick enough to cut with a knife.  The comfort of a predictable school routine was about to be upset, half of our house was packed and put in storage, and one potential house deal had gone down the tubes, incurring significant financial outlay.  Our home of 24 years was about to go on the market, and the future was uncertain.  How long would it take to sell?  Were we making the right move to Guilderland?  Was the school going to work out for Sam?  When would we ever find a house we wanted to live in?

All of these thoughts made sleeping difficult, so by the time 4:30am came around after hours of tossing and turning, a cup of coffee on my front porch seemed like just what the doctor ordered.  That porch became my sanctuary during those mornings in May and June 2015.  The coffee, the rockers, the sight and scent of flowers (everything looked ship-shape because the house had to have great curb appeal to sell), the birds quietly chirping, it all added up to a little bit of piece in the midst of chaos.  I believe those mornings helped me retain my sanity, and somehow come out the other side in a good place.

Fast forward 4 years, and I am still rising at 5am on school days.  For the most part, the chaos has moved on, our home is stable, beautiful, and just what we wanted.  Sam has had the most successful 4 years of school ever.  The early rising time still means peace and tranquility to me, a chance to read, or plan menus, or organize my weekly “to do” list.  Enjoying the first cup of coffee of the day in a quiet house grounds me, and helps me to focus on whatever tasks I have on the agenda for the day.

The last days at GHS are here, and maybe the last days of rising at 5am for me.  As Sam becomes more independent, he will be getting himself up, getting ready, and heading off to HVCC on his own, driving!  My presence won’t be required.  In some ways it’s hard to let go and have the feeling of being less needed, in other ways it’s something to rejoice about.   It’s the end of this era of Sam’s life, leaving public school and heading out on the first steps towards being an adult.  I can remember some days in the last 18 years that I thought would never end, some times of stress that I thought I could not get through.  My 5am strategy helped me weather a few of them.  Though I may not make a regular habit of rising early in the future, I know it will be there if I need to fall back on it.     

April 2, 2019
Another World Autism Day!  Only 4 years since my last post!  Really pathetic that I've let this go for so long.  I guess the lack of posts can only mean one thing- success!  As I reviewed the last post I did about leaving middle school, I have to correct myself.  At that time, 6, 7 and 8th grade truly were the best school years.  They've been replaced by high school!  To say the last 4 years have been a resounding success would be an understatement.  The reality has far exceeded my daydreams.  Packing up everything and moving back in 2015 was one of the best things we ever did, for all of us, but especially for Sam.  His experience at GHS has been stellar in so many ways, and his personal growth has been exceptional.  The trajectory started back in elementary school has continued and there is no reason to believe it will stop now. 

First, the school.  I can't say enough good about GHS.  They welcomed us before we even had a house in the district.  Representatives from the school attending his 8th grade IEP meeting set a tone of teamwork and cooperation that has continued to this day.  He's graduated from special ed classes to all Regents.  He passed all of his Regents exams and made National Honor Society.  He's been involved in everything from Unified Sports to Guilderland Players to Media.  He's anchored the school news, spoke at the fall pep rally & for ESPN, educated teachers and camp counselors about autism.  All of the teachers and staff he's encountered have been great, many of them outstanding.  The kids in school like him, and subscribe to his YouTube channel.

His personal growth has been phenomenal.  One thing he recognizes is that he is a work in progress- there is always something he wants to improve, and he works hard at doing it.  He has gone from being self-absorbed to self-aware.  He seemed to become aware of his behavior around peers just when it really started to count.  The lightbulb also went on as far as school work and effort.  He's seen the benefits of getting involved, earning good grades, and giving back to the community.  He made his own choice in what he wanted to do for college and is handling a large part of the preparations for it.  He has held down a couple of jobs during this school year, and has shown a lot of responsibility and dedication.  He's learning to drive, something he is not that thrilled about doing but is grudgingly accepting.  He has done the things he wanted to do in high school, whether there was a friend to do it with him or not.  This was something I struggled with as his mom, but he has gotten huge benefits from striking out on his own.  This skill will serve him well when he gets to college and beyond.

We wouldn't be here without family and friends.  The people who supported us when things were hard are now still here cheering along with us.  I remember thinking way back when that failure was not an option.  Thankfully we surrounded ourselves with people who lifted us up and gave us the strength to keep going and never give up.  The connections we made at places like Friday Knights, Camp Spectacular and STRIDE gave us a community of people with some similar experiences.  Our old friends supported us even if they didn't fully understand all we were going through.  Our families have always been there in so many ways, loving us and Sam unconditionally.

This journey isn't over, just moving to a new phase.  Every few years we arrive here, and every time we look in the rear-view mirror, we see experiences that have gotten better and better.  It gets harder and harder to leave the situations that have brought so much growth and satisfaction, but there is comfort in knowing that this time it's a transition that everyone is making, has made, or will make.  I honestly could not have imagined when I started this blog back in 2006 where we would be now.  I probably was too scared at that time to even dream about it.  A long-time friend and work colleague of Tom's (and a parent of a 20-something with ASD) once told us Sam would be ok in the long run.  I can see now I should have listened to him and believed!    

Middle school in the rearview mirror

Badly-neglected blog gets a new post!  Really, that should probably be the post title here.  I have been so lax in keeping up with this blog I started 8 years ago (yes, 8 YEARS!) that I likely have no right to even claim it any more.  Things have certainly changed in those 8 years.  My goal in starting this was to have a place to vent, to record what was happening as we navigated this journey called autism.  We haven't left autism behind, but what did happen was life.  Real life.  And I'm happy to say good life.  We still struggle with autism-related issues, but lately I feel like sometime in the last 2 years autism issues became more like teen issues.  Many of the things I see Sam struggling with now remind me of similar experiences I had when I was his age.  Lots of them are social- fitting in, wondering who is a friend and who is not, how to arrange, get through and enjoy social encounters, etc.  Nothing there that is specifically autism-related, although it does put a spin on things.

Middle school for Sam has been a time of huge personal growth.  I would probably go so far as to say that 6, 7, and 8th grade were his best school years so far.  Placing him in the right program did wonders for his ability to handle a mainstream classroom, regulate his emotions, develop self-esteem, and learn to navigate the social world through trial and error.  The fact he has had the adult support of some really great caring professionals has given him the wings he needed to succeed.  They knew just when to push and just when to pull back, resulting in across-the-board success and readiness to take on the next challenge.

We have been preparing for the next phase for 3 years or so.  A move out of our home of 24 years to a new town, new school district, new program, new set of circumstances.  New school settings are nothing out of the ordinary for Sam, only now he will be transitioning to a district-based program as opposed to the caring arms of a BOCES program located within a larger district.  All of us will have to get used to living without the BOCES hand-holding we have grown accustomed to.  The elementary and middle school experiences we've had have prepared us for high school and beyond.  I'm thankful that Sam seems poised and ready to take this step.

It's always difficult to leave the known and go to the unknown.  I'm sure there will be some tears and sad thoughts as we say goodbye to a school experience that has proven to be so rewarding and trans formative. 
In the end, though, it's the natural order of things, and one can't be disappointed with the normal transition from middle to high school.

2013- A year in review

The first thing I have to say about 2013 is that I'm glad it's nearly over.  It has been a tough year for our family with illnesses, hospitalizations, recoveries, and the deaths of several close relatives.  It's never easy, but it can be very overwhelming when it happens all at once.  I'm hoping 2014 can bring us a chance to catch our breath and find some balance again.

That being said, as far Sam is concerned, I feel like 2013 has been a good year for him overall.  I have seen tremendous growth over the past 12 months in many ways.  Last year at this time we still had the little boy Sam very much in residence, this year we are living with a young man. 

It's hard to put a finger on just when it happened, but definitely during this year I've noticed him embracing middle school a bit more and expressing the desire to become more involved.  This was the first year he became an active participant in his social life, coming up with his own ideas, picking out his own friends, communicating with them.  A huge change from the control we have always exerted over his social encounters.

Mostly I would say we have something called the PEERS program to thank for this, but I think readiness and maturity has played a role as well.  I first heard about the PEERS program through my involvement with CARD and SUNY Albany, and thought it sounded a lot like something Sam could benefit from.  We signed up and waited for a few months for the funding to come through and the program to begin.  As luck would have it, we ended up in a summer session that required a big time commitment on our part- and severely cut into the little free time we normally have during the summer.  Anyway, we did commit to it, and, looking back, I'm glad we did.  The benefits have been enormous for Sam.  He learned about many aspects of life as a teen that would probably never have crossed his mind if left to his own devices.  The working on phone skills alone was worth the 7 weeks of meeting 2x times a week.  Before PEERS, Sam was reluctant to use the phone at all, and definitely not to communicate with any friends.  Since graduating from the program, he uses the phone regularly to communicate with Nick, his best friend.

A best friend!  Yes, Sam really has one.  Years ago when I started this sorry excuse for a blog, I never could have imagined such a thing might happen.  Sure, Sam was always pretty social, in his way, but always had a much easier time of it communicating with adults rather than peers.  He's had playmates, classmates, kids he hung around with, but never a real, true friend.  Until Nick.  Nick and Sam met at Friday Knights.  They have much in common (both 12 years old, in 7th grade, loving taking Spanish, both with an ASD, both love Angry Birds, etc), but they also have some very important differences, which I think makes it work for both of them.  Nick is more serious than Sam, and one can tell someone who thinks a great deal about things.  Sam is much more reactive, and I've found over the months that they've been hanging around together that some of this thoughtfulness has rubbed off on Sam.

Another thing I love about their friendship is that they not only have fun together cooking up this elaborate Angry Birds adventures, they also talk about serious subjects.  Sam asks Nick's advice about dealing with the girls in his class, Nick tells Sam about when kids in school are mean to him and what he does about it.  This, to me, is the sign of a true friend.  Someone with whom you can have fun, but also talk to about your innermost thoughts.  This is so valuable for Sam on so many levels, and it makes me feel so happy for him.

Sam has also discovered girls this year- really he had no choice in the matter, since he is surrounded by females in school, and attends all his classes with 3 of them!  He is getting a crash course in how middle school girls operate, which, as many of us might remember, can really be a minefield!  He developed a crush on one of the girls in his class, and we have been treated nearly daily to the "drama" unfolding at school as she began "dating" another boy, "broke up" with said boy, only to have Sam declare he was only interested in being friends with her.  He has also established a friendly relationship with a girl he previously had a problem with last year.  In 7th grade, they have found common ground and are getting along well.  It makes me feel so satisfied to see him navigating middle school as well as he has so far.  He continues to receive good support at school, and we are happy with his placement, at least through next year.

This progress has us thinking about the future, and we are looking to maybe make some major changes.  My goal is to try to use this blog to sort my way through this process in the next year, record my thoughts and impressions as we move forward.  A new journey is beginning soon, so it's never too early to prepare for it.  

World Austim Day, April 2, 2013

Today is World Autism Day!  I know I haven't written on this blog in awhile (I guess that must mean things are going well  and I have nothing to vent about!), but I wanted to share some thoughts on this occasion, as Autism Awareness month begins!
When I think about the effect that autism has had on our family and on my life personally, I can only say it's been a blessing, and I mean that in the fullest sense of the word.  Anyone who knows me knows that I tend to have a positive outlook, not in a "Susie Sunshine" kind of way, but in a realist kind of way.  It's rare that I get depressed or think of things negatively, and if I do I don't stay down for long.  I've been blessed that way.  This past winter has been full of challenges for our family- deaths of close family members, serious illnesses, life-changing events.  A few times I've felt numb, but each time I could feel myself pulling out of it and into the light again.  My experience with autism has kind of been like that, too.  Sometimes there have been steps backwards, false starts, disappointments, but each time I've gotten back on the horse, because, as I've stated on this blog before, failure is not an option.
But I digress.  Why do I feel like autism has been such a blessing for us?  There are many reasons, but mainly I feel like Sam's autism has made me a much better person.  The things I have learned about myself in the last 12 years would fill a book, and I keep learning every day.  First of all parenthood made me feel a love for another human being I never thought possible, then when that was established a monkey wrench called Asperger's Syndrome got thrown into the mix.  Here was something my son had that I had never even heard of, much less know how to deal with.  Even without the knowledge of how to help him, the commitment to do it was there.  So we sought out the people and places with the knowledge to help us, stumbled through the first few years (as chronicled in the early posts of this blog), found our way into "normal" life, and now here we are.  I've learned that I have a whole aspect of my personality that is fearless when it comes to my son's needs, I've learned how to articulate that fearlessness in a diplomatic and persuasive way, I've learned that I have a capacity for patience that is pretty much bottomless (well, maybe not with Tom or my mother!), and I've learned that I can reduce the stress level in my life to barely a pulse, something we all benefit from! 
Another thing I can thank autism for is the excuse to live life in my own way, and not have to feel weird or outcast if we don't follow the crowd.  One reason I waited so long to have a child in the first place was because I knew I would not fit in with the "typical" parents and want to do the "typical" things most families do.  I did not think I would have permission to do things they way I wanted to.  Autism frees me from the world of organized sports, PTA fundraising, and "keeping-up-with-the-Joneses" syndrome.  Sam is his own kid with his own timetable and his own interests.  The things his 12 year old peers are doing now he might not want to do until he's 15 or older.  I've had to grow into being ok with his timing, but the fact is that it's HIS timing- he eventually does most things that NT kids do, or has outgrown them by the time they are relevant, and usually he doesn't care.  We can surround ourselves with people with whom we actually have things in common and whose company we enjoy.  We are not just thrown together because our kids play baseball at the same time.  Having never been much of a "joiner", I appreciate the fact that Sam's autism encourages all of us to seek out people with similar experiences, or to be with the people who have come to know and love us, quirks and all.
We've been so blessed to have the help and support of good friends and family over the years.  People may not have known what to say or do to help, but they were there and their support has been invaluable.  I've met so many wonderful people in the Autism community and made quite a few close friends.  Those people simply would not have been on my radar if it weren't for autism.  I've met kids and adults who range from one end of the spectrum to the other, and it's been such a blessing to see them all as individuals, and not just defined by their diagnosis.  I've also met many others with different abilities.  This community is one I would not have been exposed to if it wasn't for autism.

I also am thankful for the challenges autism has thrown our way.  Sam's behavior problems in his younger days were definitely hard to deal with, but I am thankful they happened to us because it gives me the power to empathize with those who are dealing with it now.  Unless you have had to deal with behavior challenges, it can be very difficult to put yourself into the shoes of a parent who is struggling.  Our experience with Sam helps me to understand what others and going through, and also to offer them a glimpse of hope for the future.

I know not everyone who is dealing with autism in their lives can look at it in the way I do, and there are days when it's not such a blessing for me as well.  Not everyone has the benefit of a supportive spouse, time and financial resources to try different strategies, help from family and friends, living in an area where there are resources and a community of families with similar challenges.  I'm not much of an activist when it comes to "the cause", but I do pray that awareness allows people who are struggling to find the strength within themselves to do all in their power to help their loved one with autism.  The rewards for everyone involved are priceless!

The last days of elementary school

Well, we've made it.  The last days of elementary school are here.  The last couple of weeks have been fairly emotional for Sam, and it's starting to catch up to me finally, too.  I am relieved to be experiencing this with very few regrets, and in a good headspace to tackle the big changes ahead.  A year ago I would not have been feeling this way, so I guess its good that things are timed the way they are.
Sam has enjoyed this year of school, the first year I feel like he has really been involved on anything other than a very personal level.  This year it became more about the school itself, his classes and the friends he's made.  The fact that he is feeling sad about leaving this school and the people he's come to know over 3 years indicates that he's growing up in a lot of ways.  Another year of elementary school might make that awareness even greater, and might make those ties stronger.  But we don't have another year.  Time marches on and middle school waits for no one.
I know it will take Sam time to get used to middle school- how long is hard to say.  The changes will be profound- faster pace, more demanding schedule, social pressures.  I am nervous about those changes and how he will deal with them.  His coping skills are many times better than they were at his last transition, and what's even better, I know that I can work with him to improve them further still.  Nevertheless, the first year will most likely be filled with challenges that we don't even see coming on the horizon. 
I used to think of middle school as a black hole where kids got sucked in and just had to make it through the experience as best they can.  I now look at it a little differently as far as Sam is concerned.  He has always, developmentally, done things that were atypical from other kids- like mastered skills meant for older kids at an earlier age, never had fears like many children do, etc.  So there is no reason to think that since middle school is miserable for many kids, his experience might be the polar opposite.  I feel like he is on the verge of really breaking out of some of the things that have held him back before- and I hope the Mrs. Walter's class is going to be just the thing to help him keep on that path.  Nurturing enough so he feels safe and supported, but challenging enough to keep him working hard and wanting to do it.  There looks to be some positive student role models in the class, and my hope is that he will emulate them and follow their lead.
I'm sure there will be a few tears saying goodbye this week- but I feel good about moving forward.  We have made some good, educated decisions that should yield good results and if not, effective damage control.  It isn't often I get to feel this way about impending changes, so I am just going to trust my gut and hope it doesn't steer me wrong.   

Middle school bound!

I've been very neglectful about posting, but I guess the only way to explain that is that things are going along pretty well.  This blog has served as my outlet for venting about problems and frustrations, and I'm happy to report that both are at a minimum at the moment.  I know I usually post about my anxiety during the annual review process, but this year it has been notably absent.  I attribute that, in part, to being well prepared to handle whatever came our way.  We started this process over a year ago, when we could see the middle school transition on the horizon.  We took a serious look at whether we should move or not, hired a very expensive consultant to tell us what was lacking in Sam's program and where he should be to make the transition easier, had quite a few meetings with teachers about how to improve his academic performance, and spent hours and hours on homework and building school work skills in general.  So it pays to be prepared, even over prepared.  I now feel like I have a much clearer handle on what Sam does in school, where he needs help, and where we need to go from here.  But, it was kinda nice to go along oblivious for a year or two!  That said, I doubt I will be that dis-attached again.  It doesn't pay to let it go, only to have to play catch-up later.

Another reason for the low stress level in this process is the CSE person we've been dealing with, D.  I remember thinking when she took over the job when Sam was starting 4th grade that I was glad  it was not the transition year and that I would have to be dealing with a new person right away.  I went to her with my concerns and hopes for the future at the end of last year, and since then she has been very receptive, proactive, genuinely concerned, and effective in helping us advocate for Sam.  This has been a very welcome development- while I feel that overall we have been treated fairly by our school district, I would say that prior to D taking over the job, most of the hard work was done by Tom and I.  I feel that D has made this into more of partnership.

You always hear that that is how the special ed system is supposed to work- parents, teachers and administrators coming together to craft a plan that is in the best interest of the individual child.  Judging from all the horror stories we hear at Friday Knights and various support groups, this is rarely the case.  Everyone has their own agenda, and they are usually vastly different.  Sometimes it shakes out like parents and teachers vs. administrators, or parents vs. teachers vs. administrators.  I'm seeing how lucky we are, because I feel like through the series of meetings we have had this year, we are probably as close to being on the same page as is possible.  Improvements have been made to Sam's academic program, his social goals, his mainstreaming- all because of this partnership.  He is doing well with it.  That makes everything worth it- I'm glad this process has been so positive and has worked so well, it seems, for everyone.

Our annual review meeting is scheduled for May 6.  I'm prepared- Sam is heading to a middle school program where he will have the support he needs, the opportunities he can take advantage of, a teacher who is recommended by many, and the support of the team behind the scenes.  I'm glad the system is working for us!