When life hands you a vortex...

"You be the captain, and I'll be no one.

And you can carry me away if you want to."

Kasey Chambers

I don't know how it happens...it is an odd phenomenon. I know that I am not alone in this..there are others like me..Others struggling with this same problem day in and day out..I won't be silent any longer! I must tell the truth. There seems to be some sort of vortex in our house..an invisible hole, one that sucks away socks and gloves..not pairs..just one of each pair. I don't know how it happens. I watch very carefully. I am like a cat with a mouse hole. And yet, I now own fifty unmatched socks and twenty five right hands of gloves. I'm starting to wonder, is there an invisible one footed left handed thief among us?

Oh sure, I've heard similar stories. People making jokes about recovering missing socks..gloves..you name it. They are just covering up their fear. Fear of the unknown. You see, I have had these things disappear before my very eyes. It seems to occur with Sammy the most. I will be talking to him..he will have both gloves on..and then, all of a sudden..one will just be gone. Nowhere to be found. He hasn't moved, hasn't left the room-and yet, his left glove will be missing and we won't be able to find it-anywhere! Poof! Into the vortex. The really scary thing is, we won't ever find that glove again. It is starting to freak me out a little.



My kids (well, mostly Sammy) misplace things all the time.Hats, books...trombones.. I am a regular visitor to the lost and found box at school. This is why EVERYTHING they own is marked with their names in indelible ink. That way, they always know if something is theirs or not. This is most important to Oscar. He is fastidious about his things. He always knows where his shoes are, his hat, his gloves-everything. It is one of the constants he relies on to get through his day. Which is why I was totally blown away by what happened last week.



It was Friday, I was eagerly waiting for the bus. I thought that the kids would be excited as it was the weekend AND Oscars birthday was on Sunday. Birthdays are a big occasion at our house. Really, how often does anyone get to celebrate just having been born? (Personally, I celebrate having survived labor) On a cold winters day, nine years ago, after almost being born in a car, Oscar came barreling into the world at a whopping 9 lbs. 3 oz. (his sainted mother was too far along for an epidural to have worked) Did I mention celebrating the fact that I survived labor? Either way, I expected Oscar to be excited when he got off of the bus. Instead, I was met with a very upset and crying boy. Oscar, buddy, whats wrong?" "My hat...my hat..my gloves.."
"What about them?...why are you crying?" "They're lost..Sammy lost them..lost..they are lost"
"What do you mean-Sammy lost them..on the bus?" "No!! at the museum..Sammy lost them at the museum..my hat and gloves.." "O.K..we'll find them..come on, calm yourself.." "NOOOOO!!! I want my hat and gloves..I won't have my birthday..my birthday is cancelled..no birthday for Oscar!" "Come on Oscar, we'll find them...it's just a hat and gloves...we'll figure it out..it's your birthday Sunday..cake and presents!! It will be o.k." "NO! No birthday! no cake! no presents!" and up the stairs he went..to go yell in his room for a bit. Nothing I could do but let him. Trust him to get through this-even though my instincts screamed for me to run after him and fix it. sigh..."Sammy? What happened..how did you lose Oscars hat and gloves?" "I left them at the museum" (Sammy had had a field trip that day) "How could you leave Oscars hat and gloves at the museum? When you left home this morning, you were wearing your own!" "I know!..I thought I had lost mine, but when I got on the bus to go home, Oscar had them and HIS were missing!" Do you understand why I am freaked out now? Scared of this hat, glove and sock vortex that is overshadowing the lives of my family?

An hour or so later, a very calm Oscar came downstairs to talk to me. "Mama? It's o.k. that Sammy lost my hat and gloves. It was an accident" "It was bud, he didn't mean it. Do you feel better now?" "Yes." "I'm glad..a hat and gloves are just things. No need to get so upset about them. If Sammy can't find them...we'll get you some new ones...is that o.k.?" "O.K. Mama...uhhh..Mama? We can still have cake and presents right?" "Oh Oscar...come here and let me hug you..of course we'll celebrate your birthday! How could we not? It is one of the best days ever! And off he went. and off he goes..Three years ago, losing anything would have been cause for a major freak out. I look at my now nine year old in amazement. My curly headed flying boy...How much he has grown, how wonderful he is. Kids grow and develop at their own rate. The important thing is to simply let them.

I have however, decided to wage a battle against the sock, hat and glove vortex. To try and get back some of those things I have lost. So, if there is anyone looking for fifty or so socks or right handed gloves, please leave me a message. Maybe we can get together. I look forward to hearing from you.

AARRGGHHHH..

I can't stand when blogger doesn't let you change the date of posts...so the post below was really written today!! I just had started the idea of it on Monday. There. Frustration vented. :)

Getting there...Just like that

"Sir,I don't know if you noticed. But it's July, and it won't be July for very long. Pretty soon it will be winter. And it was an awful nice night."
Sarah Graves

"Mama?...are we there yet?"..."We just pulled out of the driveway Lil."..."Well when will we be there.." sigh.."In about two hours."..."Well..I wish we were there NOW!".."Me too Lil, me too."

Last weekend we went on a family trip. We drove down to Hampton Beach N.H. to attend my dearest and oldest friends wedding. It was the first time in three years that we went anywhere overnight-as a family. It has taken me that long to recover.



Don't get me wrong, My kids are great fun. They love going places, seeing new things. They are adventurous in their own way. It is the "getting there" that overwhelms them...and me. The amount of packing required for one overnight trip, the special blankets, sleep items, forty changes of clothes, swim wear, swim accessories..you name it-and that's just for the girls...add the thirty or so books Oscar can't live without, and Sammy's collection of action figures-with corresponding playing cards..and I start thinking of bringing two cars-and of staying home. Sigh...we would not have made very good pioneers.



Our two hour road trip only took us three and a half hours..record time considering that I had forgotten to pack the boys pants, the girls shoes and Omar's belt and tie. Of course, I didn't realize this until we were half way there, but it was nothing a quick trip to Sears couldn't fix. Although we did forget to buy Omar a belt and tie..we got the necessary kid things...my children(like it or not) would arrive at the wedding clothed.

What a wedding it was..The bride was stunning, the groom handsome...the beach freezing! Yes, they got married on the beach in N.H. in the dead of winter. I have to say though..during the ceremony-it felt like a spring day. I'm guessing that it had to do with the guests forming a wind break..or it was magic. They spoke their vows and all the flower kids (every child there was given a basket of rose petals to toss on the beach-which is another blog post in and of itself) sang a stirring rendition of "Twinkle Twinkle little star"..So maybe, just maybe it was just a little magical..

After the ceremony, we walked over to the reception, which was (thankfully) indoors. I have to say, I was worried about the herd. They aren't overly fond of crowds..loud noises (unless they are making them), strange food (meaning anything I haven't made for them from their specific menu of five things)..I guess I just didn't want them to be overwhelmed..As I watched them..walk around..join the other kids...dance..and even try different food..I was the one who became overwhelmed..When did this happen? Where have I been? Who are these children??!!

There was Oscar on the dance floor-all by himself..switching between doing a goosestep and freestyle(reminiscent of people at "Grateful Dead" concerts")...My girls..joined a bunch of other kids and put together an impromptu play-with the bride as the lead..and Sammy.. he took that first tentative step from young boy to young man. There was an older girl (at least thirteen), seated at our table..and Sammy was enamored. Sammy is a very young eleven, and this girl-well she was out of his league. That didn't stop him. When we were all on the dance floor.he asked her to dance..My Sammy, the boy who still sits on my lap, who is scared of aliens under his bed, The boy who at one time could not speak..ASKED A GIRL TO DANCE!! and even better..She said YES! He took her hands and proceeded to "dance" around in a circle-looking everywhere but at her. Afterwards, he walked her back to the table, sat down next to her, and again, continued looking everywhere but at her. It burst my heart to watch him..Later when it was time for the bride to throw her bouquet, she invited anyone single to try and catch it. Sammy..went up and ..well... The bride threw it and he leaped.. there was no stopping him, he was on a mission..he caught it...dusted himself off..walked across the banquet hall to our table...and presented it to the girl, thanking her for the dance and her company. Just like that.

You know, there are so many different ways to travel as a family..sometimes, as a parent, I get so caught up in the planning, the going..that I don't always realize when we get there. My herd has hit some milestones recently..achieved things that although I didn't think them incapable of..I just wasn't aware of them getting there. I hadn't stopped to look. Now that I have...well, I have to say, the view is incredible..

As we were pulling away from the hotel, Lily called out "Are we almost there yet Mama?"I turned and smiled at her.."yup, just about."

Can you help out?

I'm asking people to please stop by www.respectforinfinitediversity.blogspot.com and lend a hand...or an email. I don't know if you are aware of the case of young Zakh Price, an eleven year old boy in Arkansas, who is being charged with assault. His family was not given the proper assistance from the school, his I.E.P. was not followed...he was restrained, and cornered. He fought back. Now, this eleven year old boy faces assault charges AND the possibility of placement in a mental institution. His family needs your support and your help. We are asking people to email both the school and the district attorney. All that information is at the blog site.
If we are going to change how the world views our children-if we want the chance to get them the services that they need-we need to be vocal-we need to be loud. We need to be heard. Please go on over and lend your support. Thanks..

immortal words...

"I have measured out my life with coffee spoons"

T.S. Eliot

"Mama?"..."Yes Lil?"...When I'm thirty, how old will Sammy be?" "Thirty six." "How old will Oscar be?" "Thirty four." "And Zoe?" "Twenty eight." "Mama?....When I'm a hundred, how old will you be?"..... Decrepit." "Decrepit??? How old is that?".."Ancient." "That's o.k. Mama, I'll take care of you." Sigh...I have no problem imagining Lily running around at that age.-no problem at all..But me? Being around at one hundred and thirty nine? I hope that by then, I will have long since packed my last snack. I do know this though...long after I am gone, my words will live on..if not in my writing, definitely in my kids.

The minute you have a child, your mortality becomes all important..you fret and you worry -"What would they do without me?..Who will take care of them the way that I do?..Who will love them like me...and get their snacks and tuck them in.. and raise them up and accept them...and understand them...Who?" Sigh... Parenting can be a perilous road...and at times I wonder, just what in the hell was I thinking in bringing these kids into the world. I have no idea of what I'm doing! None. I'm flying by the seat of my pants, driving blind...in the dark! I don't know what tomorrow will bring...or how I will deal with it. The tricky part is, not letting my kids know this. To them, I am all knowing, all powerful...omnipotent-at least, until they are teenagers . Even then though, my words will affect them.

I can still hear my mothers voice even though she has been dead half of my life. My grief has faded, but her words live on.. "Don't judge a book by its cover", " treat people the way in which you wish to be treated", "wash your hands after using the bathroom" and "ladies don't smoke or chew gum in public".sigh...I might not always listen to those words-but they are there, in the back of my head...especially when smoking in public. It does make me wonder though, what words of mine will my kids will remember...will it be "I think you are wonderful" or "Can't you just let me have five minutes to myself??!!" Or maybe, "I will always love you no matter what" or "If you don't get down off of that table, you won't have cookies till you're fifty!" I think they will remember a little of both...fondly...Or at least I hope so. I do know this-I will always make sure that they know that they were loved. Unconditionally.

Last week, my father, my nemesis, my friend, one of the biggest pains in the ass there ever was, and one of the funniest people I have ever known, my dad, died...leaving a gaping hole in my small world, and I am reeling... treading grief like it were water, just barely keeping my head above..And yet, at the same time, in my mind, I can hear him saying .." Kid?- A kick in the behind is a kick forward"..Strangely enough, I can also hear "I feel like a horses behind" "I'm so mad I could eat nails" and "You can kiss my rosy red behind"..And in an odd way, these words give me comfort, and through them, I know that I will get by-endure. My father may indeed have been fallible, his words...interesting, but he did teach me how to swim. v/

I really do hope that I am not around when Lily is one hundred years old..I mean, Sammy wants to put me in a nursing home now-what would become of me at one hundred and thirty nine? I do know this though-no matter how long I have on this earth, my kids will always know their importance to me-and that they are loved. They even may wind up quoting me now and again...just as long as I don't "feel like a horses behind"-I should be alright...

No one goes to Italy, and it has nothing to do with autism

http://http//www.our-kids.org/Archives/Holland.html

I'm sure most of you have read or heard about "Welcome to Holland" It's a nicely written piece about having a child with a disability. It is about looking at what that child has to offer instead of what they are lacking. I can't tell you how many people have sent it to me over the years. They can stop now. Really they can.



It is not that I have a problem with the piece. I have a problem with the parents who plan on going to Italy. With the parents who have this preconceived notion of what having a child is going to be. As if it is going to be this wondrous journey where nothing in your life changes, only gets enhanced by the birth of a perfect baby.That it is easy. Well, I've got news for those parents to be...Turn in your passports, because you're not going to Italy. That is not what having a child is like. I'm not saying there is no joy, that there is no adventure. I'm just saying that the fantasy and the reality are two very different things. Me, I wound up in Paramus, New Jersey, and it has nothing to do with autism. Instead it has everything to do with giving birth to a person, an individual, a bundle of need. It is about going from selfish to selfless in one last push. It is not an easy trip. Not for the faint of heart. As for personal plans and dreams? Ha ha! They go on the back burner for a while. That is just the way it is. You are not number one anymore. That needs to be understood.

It is all about the baby and what they need, not about you. Parenting is not a cruise through Venice, but rather a backwards roller coaster ride with twists and turns. It is hard, it is scary, and it can be a hell of a lot of fun. I think though, that the most important thing to remember when planning to have a baby, is that it's not your trip , it's your child's. And surprise surprise, it is their itinerary-not yours.


Today, AoA ran their usual type of "Woe is me-this isn't what I had planned on, I hate my life, but I'm a warrior and must suck it up, and maybe one day I'll look back and see what I did piece" today. It is all about sacrificing pride, relationships, sleep, dreams of having other children, financial difficulties, giving up jobs, losing years,..and my personal favorite-the author discusses giving up her dignity because she had to catch her sons poop in her bare hands. Oh my goodness. Is that all?

I'd like to go over there and say "so this makes your struggle more special-simply because you have kids with autism?" but we know it wouldn't get past moderation. I'd like to say" You think that because your child has autism, you somehow gave up more than a person who doesn't?" But what I really want to say is "WELCOME TO PARENTHOOD..fasten your seat belts it's going to be a bumpy ride."

Once again, we have a piece about how autism affects a parent. There is nothing about the child. Nothing about how hard their kids work, nothing about their struggles, their dignity. (imagine your mother trying to catch your poop in her bare hands as it was coming out.) Nothing. No, these parents didn't birth children, they birthed autism...their "real kids" are over in Italy, and maybe one day after all their "sacrifice" they will be able to go over and claim them.
At the end of the piece, the author asks..

"So where do we go from here? I suppose we continue the battle. After all, I believe God gave us these special jobs for a reason. We may never know why, but I believe that with faith, hope, and love, one day we'll look back and say. "Oh the places we went.""

I hope that one day she does look back. Sooner rather than later. I hope that she realizes that the special reason she got her child wasn't about being in a battle-but rather about being a mother. That much of the time, being a mother-to ANY child, is about sacrifice.That no matter who your child is-there are always rewards. That yes, having a child with a disability is hard, but it is not the end of the world-rather, the beginning of a new one. I hope that she doesn't one day look back and think-"oh the places I should have gone."

As for me, I was thinking that maybe I went to Holland after all. But then I looked up to see Zoe drawing on the dog, Lily and Oscar fighting about what to watch on t.v. an Sammy spilling juice all over the floor. sigh...Nope, still in Paramus, but I have to say, I've got one hell of a view.

In a word...

"Lets not quibble! I'm the foe of moderation, the champion of excess. If I may lift a line from a die-hard whose identity is lost in the shuffle, I'd rather be strongly wrong than weakly right."

Tallulah Bankhead

Does anyone ever notice how much paperwork is involved in having a child? From permission slips and insurance forms to notes to teachers, notes from teachers and everything you can think of in between. There is a lot of paper involved. When you have a child with special needs, who requires services, the amount is overwhelming. I think that my family alone is probably responsible for at least a redwood tree worth of paper.

We have recently been going through diagnosis with our youngest, Zoe. Filling out the necessary forms..answering the necessary questions...When did she first sit up? Roll over? speak her first word? Crawl, walk, potty train, do complicated math? It is endless..and it makes me feel like I'm a failure. Ten years ago, when we were doing all of this for Sammy-I could answer every question. In fact, I could answer it with incredible detail. When did he take his first steps they asked? "September twentieth, 1999, at exactly 11:02 a.m." "Eastern time." I answered with smug authority. Now, three more kids and a decade later..I'm not so confident. Sigh..I have had four kids in seven years..and I seem to be losing my memory. (Along with my mind on some days.) I know that Zoe did indeed learn to walk...and she does talk..she even has a fondness for on-line poker! When these things happened-well, your guess is as good as mine. I don't keep baby books, or records..hell, I don't even always remember to brush my hair every day! Isn't knowing that they happened enough?

In truth, it isn't all bad..There are a few questions that I do enjoy answering. "Describe your child to us" and "Tell us what it is you like about your child" The only problem I have with these questions, is that there is never enough room to answer. I couldn't pick just one adjective. How could anyone describe a child in one word? What one word or sentence could possibly encompass all that they are?

Three of the herd have an A.S.D., and although that may explain some of their behaviors, it is far from describing them. All of my kids are joyful, energetic, overwhelming, happy, stubborn, strong willed, lovely,strong, inquisitive, wonderful,curious, talkative, not talkative, tenacious, eager, did I mention energetic? I guess that if I had to pick one word, I would say "human." Beautiful and complex-and as equally entitled to respect and acceptance as anyone else.

nI have to admit, when my kids ask me when they had hit certain milestones-I fake it. "Oh you were about a year old..." "But that's what you said about Oscar!" "He's your brother..uuhhh, families tend to figure out certain things at around the same time..yeah that's it..uhhh...do you want some cookies?"But when it comes to telling them all the reasons I think that they are wonderful, I am never at a loss for words. As for those forms...I guess I'll just have to fake it there as well-AND learn how to write smaller.