Unexpected potato

~"Since we can not change reality, let us change the eyes that see reality."~Nikos Kazantzakis

                        "How was your first day bud?"..."Great! I had a potato!"..."You...had a potato?" "Yeah it was good."  Well..THAT certainly wasn't what I had expected to hear. but it was wonderful..no, more than wonderful..it was all that I needed to hear and then some.  My boy, he is taking off..moving forward..and he likes it. 

  After a summer of absolutely no expectations..  June, July, August were lovely....we..swam, fished, camped- did what we felt like doing-when we felt like doing it. It was calm- wonderful. September felt like a shock....  We went from relaxed and easy to absolute chaos in less than a week.   Lots of change going on.. split second decisions being made.

 Lily started at a new school this year. Sixth grade had been rough for her.  Socially, emotionally..it was all too much. She was just eleven years old, and was suddenly sharing a building with kids in their late teens.  My joyful girl had lost her zest..her joy. She was bored and anxious..sad and very very lonely.Luckily, we were able to get her in to a charter school. At the end of august, we went as a family to her orientation. This was a big deal-we wanted to support her. We visited the school, met the teachers, listened to the head of school explain how they did school. We were impressed....and so was Sam. "I think that I would like it here." "Really? (I tried not to sound too excited-change is hard for him..I didn't want to scare him off.)" "Yes, it seems more creative than my school.".."Well..it is very different  ...if you'd like, I will put your name on the waiting list..?" "o.k.".."Are you SURE??"
"Yes, yes I am.."..Except he wasn't..

  The school does have a waiting list. I placed Sam on it thinking that maybe he would be able to get in next year-only to find out that they had an opening now.   "Hey Sam!  Great news!  The school has a space for you!" 

The following is a transcript of the next forty eight hours

 "..Oh..uuhhh...now?" "Yes!  you can start next week!".."..Oh..uhhh..I don't know..." "What do you mean?"  "I'm not sure.."But you like the new school! You were impressed about how creative it is!" "I am..it's just..maybe I should try one more year here."  "Why?"..."I don't know.."   Wash, Rinse, Repeat, Repeat, Repeat.....

 I admit-I did try and strongly  coerce convince him...but in the end-we had to leave the decision up to him.  It had to be his choice.  My fear was that he was sticking with what he knew because it felt safer.  But at the same time-we knew he wasn't happy .  This is where living in a tiny town gets tricky. Our schools are small. Sam is different. So he is treated that way. He is well liked-but he isn't well known..He was a special ed kid in grade school...thus his reputation was sealed. He couldn't just be a regular kid. His accomplishments, his academics..basketball...everything that he did or does-whether it be making the honor roll, scoring a basket or even GASP! going for his learners permit to drive..it is all viewed through special ed lenses.  I'm not complaining..I'm not. Our tiny town has embraced him.. It is just that the label that got him help-has wound up hindering him as well.  In a town this small-he'll never be able to shake it.   It has been incredibly frustrating-more so for my boy than for anyone else. Sam is a regular young man..he has ideas, and dreams, feelings-goals that have nothing to do with his diagnosis. He deserves the opportunity to fail or succeed without his diagnosis being a constant part of the equation.

  I was so disappointed when he told me that he had decided that he wanted to stay at his old school. *sigh*  So, on the first day..as he was gathering up his back pack and lunch to go wait for the bus, Lily with a look of absolute horror exclaimed (rather loudly).."You really want to stay here??!!! Are you crazy?!"   I guess that was the voice Sam needed to hear.. because he dropped his back pack, kicked off his shoes and said.."I've made up my mind-I'm going to the new school." (hallelujah!)  "Are you sure?" I asked...trying not to let my voice quiver with excitement.."Yes."...and that was that..

  He has been going for three weeks now and the transformation has been amazing. Sam, is naturally a loner-he enjoys his own company...but, for the first time in eleven years-he isn't alone. He has a group of friends, he sword fights at lunch..he is part of a design team..He WANTS to join some clubs..He-all of him- is valued...but more importantly-he sees that he is valued-for who he is-on his own merit. That is everything...well, that and...

                                                           He ate a potato! 

 You have to understand-For the past seven years, Sam has eaten the same exact thing for lunch. Every single day. Nothing different.  Food is a delicate topic with all of my kids..textures-smells...shapes..it all matters to them.  While Sam has gotten much better at trying different foods...it can still be a bit of an issue... So for him to happily get off of the bus-(on his first day at a new school)..and the first thing out of his mouth is about a new food that he ate-and liked?  It feels like hitting the jack pot. 

  I worry so much about this parenting thing..Sometimes it feels(and I am sure that I am not alone in this) like I make more mistakes than anything else.  But this time...my son started at a brand new school-by choice, he's made real friends-AND he ate a potato. It that isn't success-I don't know what is..  


  

No apology..

~"“Re-examine all you have been told. Dismiss what insults your soul.” ~ Walt Whitman

           

 I like to think of myself as a regular parent. Doubtless there will be some who say "Kathleen? What does that mean?! What is this regular that you speak of?"   Well, I am more than happy to explain!  "Regular"- simply means that I, like so many millions before and after me-have taken on the responsibility of growing small people into big people-with people being the operative word. It is what I do.  Sometimes I am very good at it-sometimes I fail miserably. My kids aren't complaining (too much)-So, I'll take the former as an affirmative. The thing of it is-parenting is a tough job. I don't think anyone really knows just how tough until they become a parent themselves. I mean, you can talk about parenting, comment on other peoples parenting-even imagine what kind of parent you will be...but really?  You don't know till you get there.  That's o.k.-because, there is plenty of "on the job" training.

  What really annoys me is when people refer to me as a "special needs" parent. I really don't like that title-and I really don't care for the word "special" in this sense. ( I wrote about this here (way back in 2009))  I'm really not sure what to make of it.  There are posts upon posts about what it is supposedly like to be a "special needs" parent..you know the kind that tell people how "we" (those of us doing all this special kind of parenting) need all kinds of understanding and crap like that because of this, that and the other thing.  But most importantly, how we will do anything for our kids because WE LOVE THEM-*sigh* and THAT is the part that really bothers me. Hey, I get that maybe some friends or family might not know how your time is spent-that they might even need some help in understanding that you have a lot on your plate. What I don't get is having to justify what you do because you love your kid. To me, it reads like an apology. Both for your actions and your kids disability. "Sorry I can't go out with you tonight, my kid has O.T.-but I don't mind!.. because I love them."   I don't need to explain that I love my kids or that I would do anything to help them.  Shouldn't that be a given?  *sigh*  Why isn't  there ever anything good in these posts like-"give these parents candy"..or"-pay for a nanny so they can take a vacation"?  I mean thanks for the understanding, but what I would really prefer is fat and sugar laden chocolate rich carbohydrates and maybe 24 hours alone with my husband without anyone knocking on the door asking us "what are you doing in there?"  Any day.

After almost sixteen years of parenting, thirteen of those years spent navigating spec. ed in two  different states..four kids with very different needs and neurologies..reading numerous different blogs and talking with many different parents..I have come to this conclusion...Parents with kids that have disabilities apologize an awful lot. Not because they have anything to be sorry for-but because (and this becomes ingrained) asking for anything for our kids sometimes becomes such a production number..that you wind up feeling thankful for any crumbs that you do get..No, we don't apologize for our kids-(never!) But it is as if sometimes we have to apologize for their needs...

"Thanks so much for the 7 1/2 minutes of o.t. that your "assistant is giving my son every other week-I do know that your schedule is full(and that the school is stretching the law very thin by hiring you to oversee your "assistant"-but that you are hardly ever present) and I really appreciate your squeezing him in!"

We also spend an awful lot of time justifying what we need for our kids..

"Yes I know that my girl is very quiet and well behaved and not a problem..and I understand that unless someone is really watching her, they aren't going to see that she is a hair away from a panic attack, and that the teachers have soooooo much on their plates that they don't have the time to look out for a child that "appears" to be o.k-especially as there are kids whose needs are very evident......but all the same-she does have an actual diagnosis and really needs someone looking out for her!"

 I'm tired of it. Tired of wasting time fighting for things that should be givens- services that are required by law.So..in lieu of writing a yet another "special parent" post..I'm just going to make a statement. It is my belief-my statement. I speak for no one but me-from my own experience.

Here goes-
 As parent-like any other parent-my kids needs come first. I will do whatever needs doing to ensure that they grow into responsible, critical thinking, decent and kind independent (to the best of their ability) adults.This has nothing to do with disability and everything to do with it being my job as a parent. My methods may be different-but, it is all (like any other parent) for the same result. 

My kids do not need to justify their needs or existence to anyone.  EVER. They are human beings-and, like any other human being- deserve to be treated with dignity and respect.  Nor do I need to justify, apologize or make any excuses for the time that I spend working with them. I am their parent-again, that is my job.

My kids are my greatest joy. I am not sad, bereft or disheartened because of autism. Do I wish things were easier for them? Yes. What parent wouldn't?  Parenting kids with disabilities can be rough. I would never say it wasn't. The world is not particularly kind to those with disabilities-otherwise they wouldn't be called disabilities.  However-I don't want sympathy-nor a super hero cape. These are the kids I have always known-this is the parenting I have always done.  I don't know how to do it any differently. 

I could probably go on and on...but this post is already getting too long. What can I say? I'm home with four kids and I am finding it very difficult to concentrate, I guess-in a nutshell-I'm trying to say that we are all in this together. Parenting is hard. Everyone has their own definition of what hard is-and to some, the grass is always greener...or browner from their perspective. I'm not in a contest-I just want the world to be a good place for my kids. ..and candy.