Starting and stopping

I have started and stopped writing a new blog a dozen times; every time I started it my emotions would get the best of me and I would have to stop. Whenever I sit down to write I like to remain as objective as I can be.  I like to be as calm and as reasonable as possilbe, because there is enough outrage and irrational anger in this world that there really just need to be much calmer heads to prevail.  We live in an interesting time where so many people react instead of thinking before they say something and I knew if I started writing about my oldest son and his walking goals any further that I would not be able to maintain my composure.  Without that calmer head, then it wouldn't be anything more than an indignant rant.

Why was I so caught up in so much emotion?  Because, I found my son embroiled in controversy and me once again having my parenting questioned by people who do not know anything about Seamus (or for that matter, me) as a unique individual.   They only knew about the label and that box that they put other kids and adults with autism (and other 'special needs') into.  This box included what they believed.  Which was that my very capable son was actually incapapble of activities like, walking to school and crossing streets.  And again why is this?  Well, it was a 'new' concept to them.  I guess no other parents had attempted this before, perhaps, I cannot possibly say for sure.  Not one single one of them could produce enought data or information to support their reasoning; it all boiled down to 'kids like him' (as quoted by an employee of the district to me when describing the concerns).  The whole ordeal was like beating my head into a wall over and over again without moving a single brick, but for my son I was persistent. I sit here even now, not so angry anymore, as I am surprised by such limited abilities to see passed their own personal limitations.

Seamus' journey wasn't one that I just decided to throw at him.  It was one fraught with over six months of social stories, practicing, discussions, graduated distances from each door until he was able to make it all of the way on his own.  It was months of secretly observing him from behind a fence and from my car window when I waited to take his brother to his school.  It was (and is) lots of worrying and stressing about those negligent drivers and that possible moment (that any kid has done) where he might become impatient and cross without looking for cars.  He had some hiccups and nervousness that could be expected by anyone engaging in a new developmental task, but what I saw most with each completed goal was his growth in confidence and pride in his independence.  But probably the most important stage in this journey that no one seemed to really accept or grasp is that it all began with my son expressing that he wanted to walk to school on his own.  He desired some autonomy and some independence as any young man on the cusp of his eighteenth birthday would want. Understandably, he wanted to feel a little more like an adult.  Who was I to deny him this one thing that he is perfectly capable of doing?  I couldn't do that to him.

I was always taught as a child that I could do anything I wanted to do so long as I worked hard for it and I in turn have always taught my children the same things.  When Seamus came to me and told me that he wanted to walk to school, I said to him, "Seamus, you will have to work very hard to show me that you can do it.  You will have to follow all of the rules and most of all you will have to prove that you are capable of doing it to everyone else as well."  He didn't shirk away from it and he accepted that challenge.

The school year before we had had the support of his former teacher, but this last school year we did not.  We had opposition at every single turn and there were times when Seamus felt so defeated by the comments he was hearing from so many that he eventually started to almost believe what he heard from them.  It didn't stop with him at school.  I was inundated by calls and emails; comments and questions about me as a mother (Trust me, I could have cared less about what they thought of me; this was  not about me.  This was about my son and what his needs and wants were) and about Seamus being autistic.  It was such, that one day I got a call about him allegedly almost being hit in the crosswalk on a day that I found it to be far too coincidental within a series of events that already required my attention.  So, I very calmly said to the person on the other end of the line, "Let me ask you, was the incident Seamus' fault or the driver's fault?"

The response, "I am not sure (said name of a student) saw it, but does that even matter?"

"Of course it matters.  If it was my son's fault it becomes a learning moment, but if it was the driver's fault then it could be any student, it could have been you or even me."

The caller paused, "Doesn't it bother you?  Aren't you worried at all?"

"Of course it does.  It bothers me to see people driving irresponsibly all of the time; I am terrified all of the time, but if I let my fear impede my child's growth and development am I really keeping him safe?  Am I really helping him at all?" there was silence and I continued, "Keeping  Seamus safe now doesn't keep him safe in the future when none of us are left to hold his hand across the street."

I had remained relatively calm most of the school year up and until this point, but I am human and human beings can only endure watching their child being hurt by so many who are supposed to be there to help him before I couldn't leave what needed to be said unsaid any further.  They were worrying about his safety, but managed to do more damage than walking every did to him.  I found myself advocating strongly for my son most of the school year.  I asked him as time went on if he wanted me to stop and every time he said no.  He kept telling me he wanted to walk.  And I carried on, because I realized the significance of all of this.  I had a very capable young man asking me for help him to be able to do what he wanted to do; what he has the right to do regardless of what anyone else had to say about it.  There is no greater service we can do for our children who struggle to articulate their desires to others than to be their voices.  More than that, I am proud that even in the midst of all (as I later discovered) of the things he had to deal with while in his own classroom he carried on when he very well given up.

Most of you reading this do not realize the proximity of our home in conjunction to the school, but if you did (as many of my friends and family do) you would understand just how ridiculous this all has been.  In order to keep my children safe I cannot and will not divulge the local exactly, but let me just say that he only crosses one street, he almost always crosses with other kids, and he (according to one of the students that has spoken to me about how he loves seeing my son walk) looks both ways way more often than the other kids do.  (I cannot lie, the glee in hearing this was palpable.  I have delighted in it and smugly have told myself, "I KNEW IT!" many times within my mind.)  So all of this hullabaloo was being made about a single street by people who I later discovered had never really seen him cross.  I won't elaborate on my feelings here...but I will let you make your own opinions.

This is the beginning of a new school year, there is a new teacher in town, and we are working once again to help Seamus build his confidence.  He is capable.  He proved that to me many times and I have it upon good authority from my student source that "if Seamus shouldn't be walking to school none of us should be...he walks just fine and better than most."  Gratefully, I thank this young person for being a believer in my boy, he came out of his home as he saw us leaving to silently encourage Seamus to walk.  He didn't have to say anything, my son just saw him, recognized him, and told me he was ready to walk.

To preface, my son had been so affected by what was said by people about and to him the previous year that he was afraid to even try this year.  I had been worried it could be a longer start or worse yet not at all, but all it took was a peer who had faith in him to show him just what being a real friend was about.  The very next day he walked it by himself just fine.  I sat from my car with his brother watching from our driveway.  He got to the crosswalk and stopped, looked both ways, waited for the cars to stop, and then crossed that street just like anyone else would.  I mean, why wouldn't he?  Autism should not be seen as a disability, but as having different way of learning what everyone else learns.  It may have taken him a little longer than some (honestly, I am sure some of my over-protective mom stepped and held him back a little bit back then), but he had the motivation and desire to take on this huge step in his autonomy.  It was his choice and I just acted they way any mother would.

Once my boy walked on his own this last week,  I realized I could finally just let last year go.  I could finally write about the huge victory of independent walking done by a young man who I was told many years ago would not be capable of much at all.  He has thus far surpassed those limited expectations.  One of my favorite ways of helping my kids understand when someone has tried to hold them back or bullied them or was unkind has been to tell them, "You know how people say that you have special needs?  Well, his/her (insert behavior, ignorance, bigotry, closed mind, etc.) is his/her special need."  It has always helped them to move on from whatever incident that was being dealt with.  I have spent a lot of time in the last few months telling myself that same thing as I tried to overcome my frustration and anger with those who were involved.

So, to all of those people who would keep those children and adults (that perhaps do not learn in the same way as others might) from meeting their fullest potential and do not believe they are capable...don't you worry.  If you work hard enough and educate yourself you, too, can push passed your own limitations and grow a little more.  Perhaps you will understand that we are all capable of being better human beings all of the time if we want to be.

Thank you to the newer, more open generations for giving me hope that our world has a chance at being a little kinder, a little more considerate, and a little less limited by what the rest of the world would have then believe.

#forwardsnotbackwards I am an autism mom.

Autism and THIS single mom

Autism and this Single Mom

It's been over a year since I had an actual date and if you all remember from a blog some time ago?  The really lovely chap who insulted my kids and me on date one?  Yeah, he is the reason why.  I don't have the emotional energy to invest in nonsense.  Do I need to explain (yet again) why not?  I don't, but I am going to.  Not for any of you, but for me.  It's my way of letting it go without throat punching some 'do-gooder' or some fella who has decided he is capable of swooping into this equation at all.

First of all, saying I hate men is not true.  I have many men I love and respect in my world...the two young men that I am proud to call sons are amongst them.  So that in itself is pure nonsense.  Not wanting to date is just that.  So people can poison that waterhole without me.

Secondly, drop the romantic crap.  There might be some unselfish person who isn't some kind of deviant predator that would see this life and me and want it all (extremely doubtful).  Thus far I have not seen enough unselfish behavior in this country for a long time...that is evident daily by the long line of immature political arguments and self-effacing sufferers of social media drama.  (It's ladies too...the jerk ratio is high these days.)

Thirdly, relationships are hard work and I just don't have the patience to put up with someone else's baggage (since there is this idea we carry it together; I am not down).  I don't want anyone carrying my anything, because I have got it handled just fine.  I don't need help with my kids (especially from someone who will likely be the hugest issue; it's autism man, read up on it).  

And lastly, I am worth not settling for anything or anyone less than I deserve and my kids are worth even more.  If there is such a man who fits the ten page list and meets the relevant requirements to fit in my life (like realizing he and I will in all likelihood never reside together) I have to believe that it will just organically happen, because at the moment the pickings are slim (that one is for you Nicole).  We as a country are so self-centered and self-focused that it is likely not in the cards.  I refuse to jump relationship-to-relationship.  I refuse to put myself and my kids through the hellish dating process (especially what people this day and age deem as dating).  

So for those of you who want to sit in your fairytale dreams of what you want to believe my life could be...Stop.  I let that ship sail.  I am at peace (unless people want to push me then you're infringing on my peace).  It's gotten to the point that so many care too much about my life that if it actually happens you'll miss it; because, I cut out the unnecessary pressure and people from my life.  Notice 'my life'?  Live yours and let me be.  

For this single mom, I am all about reality, acceptance, and moving on.  I am okay with it and so should you.      Please find a hobby or some kind of pastime (also for my friend Nicole, hahaha) and for the love of all that is holy...Ladies (and some men) learn to enjoy being alone.  People die every day alone and not married; many had full and happy lives.  Quit investing your happiness in someone else.  Only you can make you happy.  Here is a big shoutout and thank you to all my friends who get it and just leave me to figure me out, you're so appreciated.  <end rant>

The Journey of a thousand steps...across the street part 1

From the moment I made the decision to move from the small rural community that couldn't sufficiently support my sons and their education, I poured over places that made sense and what would work best for us as a family.  When I saw the little housing complex just within walking distance to the school I knew that this was the city and this was the spot.

We moved during the winter break and we had appointments set up to meet with the SpEd staff just after the first of the year.  As soon as I knew for certain what the plan was, just as we do as autism parents, I made the decision to start working with my sons to cross the busy road and make the trek to the school to create that repetition and pattern while there weren't as many cars, students, buses, and noises.

One of the cold winter mornings just as we had crossed the street, Seamus looked at me and in his usual thoughtful efforts and tone said, "I wanna walk."

I smiled and said back, "We are walking silly!"

To which he looked unamused at me and said, "No.  I want to walk."

Then it dawned on me, "You want to walk to school by yourself?"

He replied in his pat affirmation, "Yeah-yeah!"

I had a pang, I will admit it, I had a pang on panic about him walking to and from school.  It quelled as soon as my mind fell upon that moment so many years ago at one of the first IEP meetings and a staff member looked at me through her glare-filled lenses and proclaimed that I would be lucky if he wasn't institutionalized that I found myself once again determined to help him get what he wanted as well as deserved.

Later explained to him that what he would have to do and that we would have to make a goal if it's what he really wanted.  He did not falter on his desire and so I set out to make a PowerPoint social story as I have done hundreds of time before.

A social story is a series of images and step-by-step explanations of the process to whatever it is one is trying to convey.  They are tremendous tools for those who struggle to make connections and have aided us in many ways throughout our journey.

In this particular social story I began to map out the rules and basics that one would use to explain the idea of crossing the street and we began working through slowly so as to help insure he was grasping the process.  As with most of these social stories I had to add and expand on it as time went on so as not to overwhelm him and keep things as succinct as possible.

After our first meetings and I was able to get to know the fantastic staff, our goal became a little more exciting as we realized teacher was so on board and willing to work with Seamus!   The cohesive collaboration between staff and myself helped the progress move quickly and I could see that he was grasping the concepts well.  (Don't get me wrong the Mom side of me was totally terrified and likely slowed his progress somewhat).  But by the end of the school year he was completely comfortable with meeting everyone half-way and we agreed to start where we left off the following year.

As with many things in the autism world, it isn't the person with autism who is the issue, though, and a change in staffing would prove to be the worry I had feared it would be and even my stalwart son would feel worried that his desire to walk to and from school would not come to be.

(End part one)

The Parent, the advocate, and the guardian walk into a bar...

Once again we are on the downhill slope; the last lap is being run today until the next race starts…it’s the end of this journey before trekking out on yet another.  This is life, this is my life, and this is the life of an autism parent (or anyone with a child with special needs).  Just when I think I have crossed one barrier, jumped over one more hurdle, dodged one more bullet something else seems to pop up.  My mantra over a decade now has been, “Life was never going to be ordinary with extraordinary children…I am an autism mom,” has serviced me well.  I even wear shirts with the self-made quote on them; it has been my own personal “I think I can, I think I can, I think I can…” as I have walked into IEP meetings, faced off with ignorant people (some even family), gotten through a divorce, and battled the day-to-day sleeplessness that has come with the job of autism parent.  Yet…here I sit today, a bundle of nerves as we wait until it is time to get ready to cross that next bridge to the newest in a long line of life events on the other side, and so here I am doing what I do to cope with that stress…I write about it.  So what is all of this pontificating and nervousness about? 

Well it is about the guardianship process which is part of the important stage of transitioning that must occur as our children reach adulthood.  Guardianship is something that every parent of a child with special needs should look into and consult a lawyer about.  The process varies state-to-state, but will help a parent determine what their options are for their child after he or she becomes an adult.  I am not going to lie, the process is invasive, it can be a lot on an already full plate, and it is absolutely necessary to ensure that our kids are taken care of, protected, and allowed the rights that they so justly deserve.  It is another hat we don along with the other two we already wear since diagnoses and in some cases birth.  Mainstream parents will never totally understand that when we (parents of children with special needs) wake up we are not just parents, but advocates…and as our precious wards turn 18 years old we also must become guardians.  I tell people often (and now) wear three hats:  parent, advocate, and guardian.   The differences are subtle, but anyone can wear the parent hat who cares and loves their children; the advocate fights and stands up for their children’s needs, and the guardian does all of the above within the constructs of the laws based on what their adult child is capable of as well as their medical and financial needs.

Why is following guardianship process even necessary? (and) Why is it different than what we do right now?  Guardianship ensures that our children into adulthood aren’t just taken care of, but are allowed the rights that they deserve under the laws of this country.  So many parents do not know or realize the importance of this process and how little rights we (the parents) have to help them without it; I am glad I had a basic understanding beforehand (not going to lie, I didn’t realize the extent of it though).  Since my delving into this I have since learned there are many parents who are left in the lurch and don’t petition for it.  It doesn’t happen often, but in some cases parents have lost their right to even see their kids because the state they live in takes over and the adult child becomes a ward of the state care system.  Once that happens it can take years to reclaim it and with the amount of stress we carry on a daily as parents it’s something that we really do not need in our lives.  Again, you have to call a lawyer that specializes in guardianship cases, set up a meeting and get the facts about what you need to do and what will be the most appropriate for your child (every child has a different set of needs and this will contribute to what kind of guardianship you will need to have in place).  It is different in every state and the requisites may vary, but along with visits from a Guardian ad litem and lawyers, a list of various and sundry tasks that have to be completed before the child is officially 18 and a court date that is set you will want to get things started as soon as possible.

For me personally, I thought I had started in plenty of time and likely would have, but of course…because this is life and how it works, nothing went smoothly.  There was none of the clockwork precision that I prefer and since Seamus isn’t my only child the needs of his sibling had to be taken into consideration.  Add in the ‘normal’ amount of school interactions and abnormal amount of them (we had a new teacher who hasn’t been on the ball if you will), illnesses, work, and other random occurrences…well, let’s just say I now realize exactly what I am made of and I have counted twenty new gray hairs on my crown that I have definitely earned by the sweat of my brow.  I am proud of myself and stress-managed nicely, years of self-compromises have taught the OCD perfectionist-self how to let go of the things I cannot control (it doesn’t mean I didn’t have moments, it just means that I didn’t fall to pieces when the hiccups happened).  I am grateful for my list-making and bow to my Smartphone as it has kept me on track when I am sure that I would have fallen off of it!  It has all lead me to this point with my son today where in a few hours we will stand in front of a judge and that I will be legally named his guardian.  Although my own personal anxiety is at an all-time high I understand that this is the easy part of this process, that it is standard for all parents of future adults of special needs, and that soon we can get back to our ‘normal’...well for at least three years until I have to do it all over again for Aiden, but I will be a little wiser this time and am a little more forewarned as to what will happen.  My lists are already made and I plan on meeting it head on like everything else. 

So here I sit, typing this blog out, looking into the future as I always do with the hope, the perseverance, and determination that I have always had from that very first IEP meeting and realizing just how far we have come…and even how much longer we have to go.  In my mind, I say to this future, “Bring it!!  I made it this far; I might as well ride it all the way until the end.”

Please feel free to email my blog or Facebook page for questions and I am available to all parents who need a support or a friend while they walk their journeys.  (coming soon blog:  The Longest Walk…Across the Street.)

Some of the things in my state that had to be done:  get an ID card, get a checking account, have references that would be able to speak of my parenting, look into state and federal resources, and find a lawyer who specializes in Guardianship Law. Please remember the process is different state-to-state; Washington is a pro-autonomy state which means they advocate and prefer that the individual with special needs have as much say as they are capable of having in their own lives.  I actually believe this is best as we will all die someday (speaking to the parents) and if we haven’t prepared our children as much as we possibly can we are doing them a grave disservice after we are gone.

What I did personally to help him and I prepare:  I wrote social stories, discussed daily with Seamus what this process entailed, and tried to keep his routine as much as possible while helping him to understand what this was all about.