Tuesday, August 18, 2009

Errands with the girls.

Boy, extended school year programming is over and the kids are home. All day. Every day. I'll be honest, I'd forgotten how taxing it is to do things with all three girls. I don't mean things like Climbing Mt. Everest or feeding 5,000 homeless people on a loaf of bread and 2 fish. I mean going to the Post Office. The grocery store.

If you don't have a child with autism, let me see if I can put this into words for you. I should be able to, right? I'm a writer. I'm writing a book telling you our story. And yet... I can't find a way to explain to you what it's like to try to corral all three girls and keep them safe in the parking lots and hang onto a 110 pounder and a 105 pounder and a loping 60 pounder. For those of you with boys on the spectrum, I tip my hat to you - it must be much harder.

I found myself getting "the look" at TJ Maxx when we returned a $7.50 pair of capris. Mia blasted through the line and doesn't always understand "personal space." She's 14, not 4, so most folks don't appreciate her foot clomping onto their ankle in surprise. (Tell my girl to file that under "understatement" please.)

We went to the Post Office to mail out this week's Age of Autism T-shirts (clever me, when you make a donation to http://www.ageofautism.com/ we send you a T-shirt a la public television. No amount stated - readers give what they can. We've had $1000 donations (OK, just one but man it was sweet!) and $1.00 donations, which touch me just as much. Everyone gets a shirt.)

The girls know the Post Office because they go every week with school. Then it was off to the Stop and Shop. We managed - but God forbid I needed more than a few items. It's just hard to literally phyically keep all three near me and not look like boulders rolling down a hill at you. We lurch through the store.

Of course, it's summer - so there's lots of kids with their Moms. I still marvel at two year olds talking. 4 year olds following directions. 3 year olds who know to look before crossing the street.

Got typical kids? Count your blessings, your life is easy, even when it's hard. Got kids on the spectrum? Count your blessings. Your life is rich, even when you're about to break.


Anonymous said...

Just getting one child through the store successfully takes all of my concentration and focus. I give you a lot of credit with three.
How do you do it? My brain is so fried at the end of the day with just the one child on the spectrum. Any tips?

Holly said...

Kim, I love how you write what you write. I love your wit. I love the way you spin it. Between you and Drama Mama, I get my free, much-needed therapy by reading some of your blog spots. I'm in a po-dunk town with ZERO traffic lights and a recovered kid down the street who did NADA biomedical. I am deep in biomedically recovering our tough-nut, slow/no responder; and I am the town lunatic to most, I'm sure. Keep on keeping on. I NEED to read your posts!

Kim Rossi Stagliano said...

Hold your head high, do your best and pretend there's a camera on you. I find it helps me maintain my cool. And I rarely apologize on behalf of my girls. I might nod and smile and use sign langugage to connote "disabilitity!" or even whisper "autism." I'll say, "Excuse us" or "Pardon us" but you'll be hard pressed to hear me apologize for my kids. Just do your best and remember our kids have to live in this world, best to get them out and about. My brain is also fried. And I'm tired and stressed and look like kaka. Then Bella says, "'Ello mama" or Gianna comes up with a lulu like Sunday am when I passed gas and she laughed and said, "Arty Farty Mom has gas!" Or when Mia closed the door today after I'd asked GIANNA to do it. She was listening.

Sometimes you have to make up your joy.

Come back whoever you are, Anon.

Anonymous said...

Oh I do hold my head high when out and about. Learned not to give a damn what anyone else thinks--that does help! I worry so much about after age 21 though. It's what keeps me up at night. Who will care for all of our kids? Will they sit home? AHHH. I will never forgive myself for trusting doctors and those goddamn vaccines. Anyone who thinks this epidemic isn't caused by vaccines has their heads up their ass! Sorry to vent on your blog.

Kim Rossi Stagliano said...

My blog is for venting. I worry too. Non stop. We'll take care of each other and our kids.

Penny said...

Great post Kim. Have 3 girls myself, oldest has autism and is 12, middle is 11, then I also have a 7 year old, who just was diagnosed with Type 1 Diabetes in January. I know, I cannot win the $$$ lottery to save my life, but I won some kind of lottery somewhere to get all of this at once!

You know, your post reminded me of heading to DisneyWorld in March of this year. One pre-teen with autism, one NT who wants to do everything NOW and one just-diagnosed child with Type 1 diabetes. (Keep insulin cold in the Florida heat was our mantra throughout FL) The trip was orchestrated with the precision of a CIA mission.

I often wonder why, when the trip was done and I had 3 kids who rode every Disney ride, used the Guest Assistance Pass for kids with disability like it was a VISA card, and managed to survive the whole trip, why, why, why, wasn't there a medal and a cold drink waiting for me at the very end? I shoulda got a friggin medal, it was very much like the Amazing Race. Oh wait, the Amazing Race was WAY easier than this trip.

Thanks for a great post, I can totally relate.

Penny said...

Oh God, my oldest is 13, not 12. I chopped a year off her life. Sorry about that, I am brain dead from the heat here in PA....

Roger Kulp said...

Mia blasted through the line and doesn't always understand "personal space." She's 14, not 4, so most folks don't appreciate her foot clomping onto their ankle in surprise.


It's not like you ever stop doing this when you reach some magical age.

You're lucky they stay with you,instead of being off wandering who knows where.

3 year olds who know to look before crossing the street

You mean people actually do this ? Hell,I never have.


Kim Rossi Stagliano said...

Hi, Roger - a Mom can dream! :)

Michelle O'Neil said...

I read this earlier and don't know what to say. "I don't know how you do it," probably gets old.


Amanda said...

Ha! Mine have just gone back to school! {gloat!}

I'm sure like me you have developed the talent of directing all children and simultaneously giving the direct eye contact "come on over here if you think you're hard enough" smile to the goldfish onlookers.

The best thing I heard recently was an autism mum out with her five year old in a shopping mall was getting stared at as he had a melt down. she recovered her son then asked in a loud voice "Why are you staring? Are you a paedophile? Is that why you're staring at my son?"

The other thing I have to say is that I discovered on the last day of the holidays at the PlayZone that my girls have better manners and turn taking than a lot of NT kids - they waited to get a shot of things while all the other little brats just tore in front of them. No one else was bothered so I intervened....one red faced parent of a four year old got huffy but so what?

Sharon said...

Kim - YOU rock! I was sent your site from a friend of mine and just can not stop reading! I too am a mom of a little girl with autism "Jillian"(11 yrs old) and who I just love with all my heart and learn from each and everyday. BUT you totally have nailed this - as I read I keep saying "oh yeah thats us,. oh yeah we been there and done that..." Good for you and I just appauled you! Thanks for writing and doing a great job at it! I will read your blog everyday - its just great!

Kim Rossi Stagliano said...

Hi, Amanda - and welcome Sharon! No matter how we approach autism treatment (or not) we share a zillion stories, that's for sure. Hugs to Jillian. My girls are almost 9, 13 and 15.

Anonymous said...

i read your blog every now and then, and think your an amazing mother raising 3 children on the spectrum! I want to say something to Anon, when the child turns 21, fight day and night to get that child into a day program, assisted living, group home, anything, keep fighting. I know a family who has a 22 year old severely autistic boy, the boy sits and watches barney all day long, that is it, that boy will continue to be severe, continue to struggle with this disorder, its all about never giving up. The moment you give up, is the moment they need you the most! I also know somebody who has a 24 year old autistic adult who has moderate autism, all day long that adult lays around the house, stimming from room to room. The adult can't take care of themself, needs assistance with a lot, and is still a big on self injurious behaviors. However there isn't anything out there for anybody over 21, everything has a waiting list, and this particular adult only suffers more each day. This adult can't even feed itself or be able to do simple things as do their own hair. Its a tragedy to watch, but what can you do? put the adult away let it suffer somewhere else, no this is all thats out there for many adults, until their is more housing or options and less waiting, this is it. Don't let this happen, fight, fight, fight. These children especially yours I take it, will be adults one day, and it is something scary to look forward to, but you have a chance to give that child an opportunity most adults don't have. Don't let that opportunity slip you by!

I know this because I'm around adults with autism all the time, I've watched them be too big to control, so their left to do whatever they want as long as their not harming anybody or themselves, just rot their life away. I watch how some didn't even get therapies, how they were seen as mentally retarded as children, now as adults seen as autistic with no options but a new label for them to be seen as. Its depressing, and I read a lot of blogs by parents of autistic children, I pray everyday for you all. I will end this way saying, god bless!

drama mama said...

Kim, I marvel and wonder how you do it, but then I read you all the time and I know EXACTLY how you do it.

You are one of the strongest humans I've ever encountered.

And your last two lines? They really sum it up for me.

K Fuller said...

I am lucky with my 16 year old son. He functions well enough to e run errands with me ,if he has to. He hates to go to crowded stores and will start hissing like a snake to keep people away from him. I pray that no child starts crying, and that no child misbehaves. Fat chance. If a parent smacks a child in the store, and the child begins to scream, all sorts of inappropriate things will come out of my sons mouth. One would think that after doing this for over 14 years I would be steel against the looks and whispering. But I am not. I now say pretty loudly...Autism, and 1in150 kids will be affected. You will be lucky if it doesn't happen to you.
Kim,you are a great example to all of us, ~grace under fire~
I am sure you would rather just be a writer of humor, but you show us all the time that you can do both!

Anonymous said...

drama beat me to everything i wanted to say.

you (and those gorgeous girls) are incredible. i read this on my phone yesterday (i can't comment from there) and all i kept thinking the whole rest of the day was that i wished i were closer so that i could be that person that you talked about a while ago .. the one who simply shows up and says, 'i've got you covered. go.'

alas, i don't know how to make that happen from here. but truly kim, your strength and your 'no apologies' attitude is beautiful to behold.

Kim Rossi Stagliano said...

Thanks, everyone. I think what helps me manage is that I know I'm doing everything I can (within budget) and am helping other families in some way at the same time. The Internet has been a lifesaver for me. I'm a social person and autism tends to lock us up to some degree. Knowing that new treatments are always available and seeing the progress in the kids is a huge boost to me. I couldn't do this on school alone. I'd feel impotent and I can't manage that. And I've met the best people in the world - it's startling, isn't it - the quality of the autism famiy?

J said...

Super woman, you knock my socks off! I find myself telling everyone I know about you (just did it again last night)... "You think that person is strong? You ain't seen nothin'! Let me tell you about this woman I know..."

Keep on keeping on Kim!

tina said...

Kim, you are a constant source of inspiration, hope and laughs! I have one 28 month old girl on the spectrum and I have my days where I am burnt to a crisp. You are an inspiration for me to keep plugging along. Thank you.

audra said...

I am new to your blog and want your book for my birthday. I must say, that last sentence on this post was awesome. I have 2 boys on the spectrum and it's my feeling completely. your girls are stunning and lucky.