Saturday, July 19, 2014


~"The outward man is the swinging door; the inner man is still the hinge."~Meister Eckhart


 So, Summer is going the way Summer usually goes...mostly lazy days with a summer rec program sandwiched in the middle. Now that the kids are older, it is easier to spend more alone time with each of them. The boys and I have taken to walking most nights-exploring the different areas in town. Part designated route and part adventure. We walk down to the river and then over to the playground taking mostly different routes in between. The playground is always our final destination before returning home. Our last stop- with the wonderful swings.  We save that for last because by the time we get there, it is dusk and we don't want anyone else to be there. I mean really-swings! Who wants to have to wait for a turn?  Besides it would look kind of weird if we had to stand around ( a 50 year old woman and her 2 very tall sons) waiting for a five year old to hurry and finish. We also like the quiet-ending our evenings in the air. The three of us in our own heads swinging at our own paces. I think that it helps us all sort out the day or anything else that might be rolling around in our brains.

  There is a lot going on for all of us right now.  Sam is at an age where he is just filled with longing. He is such a good kid.  So genuine and open-no angsty teen boy attitude. He doesn't grunt!  He actually talks to me! Real conversation!   He is so ready to leave home and  He feels like this town is too small and that there is no longer a place for him here. He wants to DO things-and he wants friends.  He just doesn't feel any special connection with any of his school "friends".  It isn't that he feels left out-but more like he can't find interest in the things they are interested in. He's chomping at the bit-and I'm trying to keep him steady...Trying to convince him that you spend more time being an adult than a teenager...that he WILL find his tribe..I'm hoping that with all the changes going on in our lives (running a restaurant) we can get him into some classes and activities away from school. Fingers crossed that this year will be better...

  Oscar is all about going to camp this Summer. In his own words he "Wants to make friends and have my own adventures!" Next to Lily-Oscar is my most social kid. Language and processing difficulties and all. He so wants to participate in things-but, his disabilities exclude him.They shouldn't-but they do. He's a smart kid-he knows so much more-SEES so much more than many people give him credit for. He has these moments of verbal clarity-of precise thinking that just floor me.He also has a deep sadness. He knows that he is different-and while he is confident in who he is-he feels left out-alone. The other day, he was going down a hallway ahead of me...he passed two young men-(perhaps two years older than him) he was walking the way that he walks...flapping his hands at his sides..intent on going where he needed to be...Right after he passed the guys..they turned to each other and smirked..a kind of "get a load of that character" kind of look..until they noticed me. Yeah-they didn't expect me there.. I just looked at them-said nothing..just stared. Causing an instant look of almost shame.. (as it should)..and I walked on. What I wanted to do-and did in fact do later (in my mind) was smack them in the head..tell them that they were dumb-asses..tell them that my Oscar-my son- had more dignity-more character-more humanity-more confidence alone- than the two of them could ever hope to have combined. So, while I quietly agonize over these slights..agonize over his future and the world he will one day be an adult in...he remains persistent, confident and sure in himself.. He walks tall. I really hope that his week at camp is everything that he wishes it to be and then some.

 As for me-I swing with my worries-and I worry about boys,my girls..Omar..will our house ever be done?..My chickens and strapless bra. Have you ever tried to wear one of these things? Holy crap! I wear a lot of tank tops-some with "Y" backs-and I loathe the whole let your bra straps hang out look.. I figured I would try one of these strapless numbers. I don't know if I'm inept?  Somehow wearing it wrong...I put it on and it fits correctly-as long as I stay home.Really-I can do anything in it.  Kind of like the "Hair club for men" commercial (only with a bra instead of hair)..I can run..jump-swim even! name it-and it stays in place.  But the minute I have to go anywhere-especially if there are people-slippage ensues..I don't know why it happens!  I get out of the car-everything is where it belongs- and then I start walking (usually towards a group of people) and ever so slowly it starts sliding down my rib the same time turning around. Now, I am not complaining mind you-but, I am not what you would call "full figured" fact, I'm quite a bit less than, my upper undergarments are slightly endowed...o.k.-they are padded! So...when this strapless band of preformed breasts slips and turns...I either look like my head is on backwards OR that I have started growing breasts on my lower back. It's downright unsettling! The only thing I could think of to do (besides duct tape) is to walk with my upper arms pressed firmly to my sides-while my lower arms swing up and down. My upper arms slow down the sliding and the movement  of my lower arms push it up in place. It also helps if I sashay my hips-it helps with the upward pushing momentum. This would all be fine and good if I didn't look like a woman whose laxative had just kicked in. It's even worse if I am just standing and chatting with someone and only one side slides down!  Then I oh so casually(so the other person doesn't notice) have to do an almost side bend while trying to (again casually) thrust one shoulder repeatedly in an attempt to get "things" back in proper position.  It's like playing with one of those party favors.  You know the plastic disc with the silver balls that you have to maneuver into the tiny holes. It's a delicate operation!. Oh such worries.

  As you can probably tell-these nightly walks with my boys are necessary for all of our mental well beings. I am finding great solace in my swinging..This summer, it seems to be all that I long as I'm wearing the proper support.     


Saturday, July 5, 2014

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" 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 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.