by Sarah | Nov 8, 2008 | All About Molly, Autism, Crap
“Well what does she have?”
“Autism.”
“Oh, she does NOT! I’ve SEEN autism, and that isn’t it.”
This conversation happened on my trip home. It was my grandmother, whom I adore dearly and I hold no ill will toward her for it…but it reminded me of the times the conversation has happened in other situations.
When being told of her diagnosis after 2 years of searching and waiting her (special needs) teacher said, “Really? Well, I’m surprised by that.” Other people look at her and then at me with the huge look of doubt and you can practically hear their thoughts – She looks fine to me.
It takes all of my effort to smile and nod and move on into different conversations. I have to remind myself that these people don’t see her day in and day out. They don’t see her meltdowns (she saves those for us), they don’t see the way disruption in her routine makes things wonky, they don’t see her when she gets off the bus after school so exhausted from working at her therapies in class that she crashes on the couch for two hours.
They see a girl without the typical red flags, that makes eye contact, that smiles (at us) and hides from strangers, that talks and laughs once she’s familiar with the situation.
They expect what the propoganda shows, children ‘locked within themselves’. They expect behaviors and habits they see on news reports and fundraising sites. They expect an autistic version of ‘normal’.
They don’t know the years of therapy she’s been to help her become verbal. They haven’t watched her for 4 years like us, like her doctors. They don’t know that just 6 months ago she COULDN’T express her needs and wants. That six months ago the only calming activity when she got overstimulated was DPPT. That she does have moments where she fits into what they expect to see.
And I am grateful that they can see the child they do now. Thankful for Early Intervention, thankful for Developmental Preschool – that those two services have helped her become what she is today…and I am frustrated that people can’t see beyond the stereotype, that they don’t see that the spectrum is wide, and we happen to be on the higher-functioning end.
Look beyond the label, look beyond the stereotype…see the child and accept her for what she is. And if you’re going to take the time to ask the question, take the time to see the years it may have taken to reach that diagnosis…to see the months of therapy and what they’ve done to help the child…not look and judge because it’s not ‘typical’.
by Sarah | Nov 4, 2008 | All About Molly
I don’t know who told Riley she could do this…because it certainly wasn’t me. For the past couple of years despite being a ‘big girl’ walking around…she’s been so consumed in her own little non-verbal world…and so far behind in weight that she’s still seemed so tiny…so much my baby…
So I’d look back at pictures like these and think – that’s not so long ago:
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Suddenly in the past few weeks she’s been blossoming…in good ways and bad. My tiny non-verbal, non-eating little baby-girl has begun to refuse her liquid meals in favor of REAL food. She’s talking and turning out to be one heck of a spoiled-brat-bullying-big-sister. She’s got attitude…she plays…she eats and eats…she displays her intelligence in surprising ways.
She still has her quirks, she still hesitates in crowds and at school. She still has her ‘Riley-isms’…but there’s a new part to her…one that is a big girl. One that has shown up suddenly, one that has me watching her in wonder…wondering where my baby girl went…and how we ended up with this in her wake:
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An all-growed-up big girl…one that can express her needs and wants…and does so with aplomb.
by Sarah | Oct 28, 2008 | All About Family, All About Kennedy, All About Molly
In case you missed the news-flash…I was in Buffalo for six days with my kids – and no hubby. Gro-gram (my grandmother) kindly housed us at her place. She had two spare sleeping places – the couch (with a pull-out bed, but who needs that?), and the spare room fully equipped with a full size bed.
Brandon had the luxury of sleeping on the couch. The two girls and I got the spare room with the full size bed. Two toddlers, one of whom still normally sleeps in a crib…and me.  It ended up sort of like this:
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Riley…she was Stretch McGee…lying flat on her back on one of the pillows, long limbs flailed about the bed like she owned it…snoring away (such a sweet snore).
Angel was Snuggle Bug. She’d curl up her tiny little body next to Riley as they slept…and every morning I’d wake to find her twisted in the bed, snuggled against me.
I was left to cope with the remaining little bit of free space. The girls had taken the pillows, so I absconded with one of the little square pillows from the couch w/o much stuffing. One foot hanging off the end of the bed, sometimes both. I got kicked by Riley a few times…I swear the child is only 40″ long…but you put her in bed and she stretches out to twice that size.Â
Needless to say I didn’t get much sleep…but amazingly the sleep I did get was rather sound…especially in the morning when Angel would curl up against me…her little head tucked under my chin…and for an hour while we slept like that…nothing was uncomfortable about that bed.
by Sarah | Oct 27, 2008 | All About Denver
I spent (approximately) $200 in gas and travelled over 1,000 miles to teach my 10 year old a science lesson.
What science lesson is that, you ask?
Why, the meaning of “Lake Effect.”Â
On our way TO Buffalo, a band of very low-lying clouds hovered in a perfect arc around the edge of the lake…disappearing into brilliant blue skies just a few miles off. I pointed them out and explained to Brandon the meaning of ‘Lake-effect’ and how he’d hear PLENTY of that phrase when we were in Buffalo…and how it ties into tales of snow and storms.
On our way HOME from Buffalo he got to see the proof of my lesson first hand. From the minute we hit Pennsylvania until about 10 minutes outside of Cleveland we drove through variable levels of a snowstorm. From a mix of rain and snow, to flurries, to a windy-snowy mess.Â
I suppose it was worth the science lesson since he missed three days of school to go on the trip 😉
by Sarah | Oct 25, 2008 | Holidays
Five years of Christmas together under our belt. The first year was good – big, lots of presents for all. After that our money troubles really started to form. Two jobs still didn’t allot too much for Christmas. It went down to buying for Brandon, and being happy with that. When Riley and then Angel were born, we satisfied ourselves with a few small presents for them since they wouldn’t remember and attempting to make Brandon’s Christmas’s big.Â
Last year we managed to pull together the money for a big Christmas. Piles of presents under the tree, wrapping paper everywhere. Then getting together with teh family and MORE presents there.
This year we could do that again if we wanted to. We could spend hundreds of dollars and put piles of presents under the tree – toys that would be destroyed by el-distructo (Angel), toys that would be ignored and forgotten like every other toy in the house. Boxes of clothes that would get an “oh” from Brandon and thrown aside.
But we’ve talked about it…and we don’t want to do it. We’re going to let Brandon know that our plan for the holiday this year is this:
1. The kids will each get one ‘big’ gift this year. For the girls it will be something smaller, for Brandon it will be one big gift. He can give us some options and we’ll figure it out.
2. Brandon will pick a charity and we’ll donate $50-100 (we haven’t set the amt yet)Â to that charity in his name.
3. Handmade gifts will be encouraged…even if it’s something silly.
4. Archie and I will get gifts for each other this year – but we’ll have a spending limit of $20 and it should be meaningful.
5. We will find something charitable to do for the family.
It just suddenly hit me the other day that just because we HAVE the money doesn’t mean we need to SPEND it…not on a bunch of stuff that will go by the wayside or get torn up. If we put some of our money and time to things and people that need it we’d appreciate it more in the end.Â
Now I just have to get some motivation inside of me to have the patience to sit down with the kids and do crafts with Christmas in mind…and use THOSE to decorate my house instead of spending tons of money on decorations from the store.
by Sarah | Oct 20, 2008 | All About Family
The past few days have been a whirlwind of activity. I leave in two days for Buffalo…so we’ve been a little swamped…
~ I’ve shopped ’til I dropped – TWICE – at the resale shop. Making sure the kids drawers were full…and we’d have enough cute clothes to take w/ us to NY.
~ Along with one of those shopping trips we went out to eat.
~ I’ve been doing laundry – also to be sure we had enough cute clothes to take w/ us
~ I’ve been doing cleaning so Archie has a halfway decent home when we leave.
~ I’ve been doing laundry – wait, did I say that already? Yeah, well, it’s taking over my life, it might as well take over my post.
~ I’ve been pre-writing posts for my absence. I may actually post more when I’m gone than when I’m actually here – scary.
~ Oh, and we’ve done a little of this:
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~ And have I mentioned that I’ve also been doing laundry?! Yeah…THAT much. Family of 5, you know…some of whom really need to start wearing clothes more than once before they end up in the laundry.
~ Getting as much chat and play time in w/ my best bud Jess as I possibly can before I leave to the land of no computer (I can feel my withdrawals starting already)
