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:
Â
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:
Â
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:
Â
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 11, 2008 | All About Molly, Failure to Thrive (FTT), GERD, Russell-Silver Syndrome
Yesterday we covered Riley’s relatively normal pregnancy and childbirth. As I said then; for the first three months everything went smooth – except that she had to sleep propped up in her carseat. She would not sleep lying down at all. Ever.
At three months old, I went back to work. I took a part time evening job waitressing at Bob Evans. The first week of work, things got crazy at home. I would leave and Riley would scream all night until almost 10PM. This was beyond colic, this was intense, pained screaming. Archie blamed it on my return to work the first couple of nights…but then he told me something was wrong.
Archie’s instincts have a way of being right. So, when I had to leave work early (in my first week) to come home because she was so horribly bad off, we determined that we’d call the pediatrician. We were told that if it didn’t improve to make a sick appointment in the morning (it was a Saturday).Â
The next morning we called and made the sick appointment, not wanting to wait until Monday. We took her in and learned that she’d flatlined in her weight gain. In the month since her previous appointment she’d only gained about 3oz.Â
Listening to our descriptions of what was happening the ped suggested that it was likely GERD (reflux), and perscribed Zantac. He told us to try giving her some formula after breastfeeding to weigh down what she was eating (a directive I regret following…but that’s another story). Then he scheduled some tests for us to get a confirmation of the diagnosis.
The next week we were at the children’s hospital with her in the X-ray department having a fluoroscopy performed. I was standing there watching as she swallowed the barium right up. I watched it go down, and stared in shock when it shot back up VERY quick, stopping at her throat before going back down and shooting back up again.
Our diagnosis of silent reflux confirmed, we followed another of the doctor’s directives that I regret….adding cereal to the formula we gave her.Â
Over the next few weeks she went in for weight checks constantly, but her weight gain didn’t rebound. So, under my (supposedly) BF supportive docs suggestion I pumped and switched exclusively to formula w/ cereal added. He said that we would get back to BFing once her weight came back on an even keel.
But the weight never came back, and neither did the breast feeding. Despite the treatments for GERD working in other ways (she would lay down to sleep, the screaming stopped)…her weight couldn’t seem to come back where it was supposed to be.
Eventually it got to the point where her weight was in the -25%. She was at least a pound beneath the lowest line on the growth charts, and we had no idea what to do about it, where to go next.  She was one year old and weighed 15lbs to her 29inches. She was a beanpole – skin and bones. Her hair was thin and practically non-existent.
It was around this time that we ended up switching pediatricians for many reasons. With the new pediatrician came a new look into the weight issues Riley was having. A pair of fresh eyes that would help us try to find an answer.
In came Dr. S. She has been our joy, our savior, and just the best damn pediatrician ever. She started the two year search for answers…
*******
I’ll continue on Monday with the first stage of our search…from bloodwork, to the specialist and our introduction to Early Intervention!
by Sarah | Oct 10, 2008 | All About Molly, Autism, Failure to Thrive (FTT), IUGR, Russell-Silver Syndrome
When my blog was closed for a couple of weeks I received an email from a new visitor. Her daughter was FTT and they were looking at a possible RSS diagnosis, among every other measure being taken. She asked me for our story and shared hers. Since her last email I’ve been busy and my brain still isn’t functioning so I hadn’t gotten back to her yet…but I thought I’d start to try to answer her question here. Starting at the beginning of our special needs journey that we’ve gone through with Riley. From the beginning…
*********
For the most part, my pregnancy with Riley went smoothly. I had minor issues with morning sickness (hello Saltines!), and some major skin issues (hello ringworm, dry skin, and excema!). Otherwise, things went well. She, and I, grew normally until around 20 weeks. That was the first time the ‘huh‘ factor came into play. I started measuring just a little small.Â
It wasn’t a panic inducing moment by any means, just a ‘huh‘ and a ‘we’ll monitor it’. My doctor loved excuses for extra ultrasounds (he likes to keep Mama’s happy by letting them see their babies), and he guessed that the small measurements may produce cause for a third trimester ultrasound.Â
As the weeks progressed I continued to measure small, and so I received another ultrasound at about 32 weeks. The ultrasound determined that Riley was small, too. Not a whole lot, but a week or two behind. Still not reason for panic, but reason for monitoring.
For my 36 week checkup I received another brief ultrasound. Riley was growing, but was still showing behind. My OB told me to keep drinking plenty of fluids and he’d check us again in a couple of weeks.
At 38 weeks I was already 2 cm dilated, and my measurements were still small. A final ultrasound revealed that in the previous two weeks, Riley hadn’t grown at all. She still looked healthy, but now looked about 4 weeks behind.Â
My (wonderful!) OB looked between Archie and I and said, “Well, we have a diagnosis of IUGR, probable low birth weight. It’s a medical reason to induce, would you like to go now?!”Â
It took one look and two seconds for Archie and I to say, “YES!!” We drove home from the doctors making calls, picked up our bags and drove the three minutes from our house to the hospital. Idiot me didn’t eat before we went in…but that’s a different story.
I was hooked up to the IV and monitors, where it was discovered I was contracting. At three minute intervals! I had no idea. They started the pitocin, and within half an hour I DID know I was contracting.Â
Long story short, eight hours later Riley pushed herself out (yes, you read that right, I didn’t push…AT.ALL), and came out blue with a nuchal chord (around her shoulder). Luckily, she immediately started screaming and pinking up, but the nurses scooped her up and took her away anyway…there was no instant holding.Â
She was born 6lbs 7oz. She was long and skinny, with a popeye effect…but she was beautiful and fair. She took to breastfeeding like a champ and was released from the hospital in the normal amount of time.
The first three months were wonderful. She was small, but grew on the curve. She fed constantly, but would not sleep lying down. It was our first hint of trouble, but we didn’t realize it. I just let her sleep in her carseat. It propped her up at the right angle and she was too small to roll out.Â
The first three months were magical…she’d fall asleep in my arms, she was tiny and cuddly and totally lovable. We didn’t know what a hectic world and stressful life we were about to embark on…we just saw oru beautiful fair princess staring back at us…
*******
For sake of length and sanity, this is to be continued :DÂ Tomorrow, I think.
by Sarah | Oct 9, 2008 | All About Kennedy, All About Molly
I have been MIA as I’ve tried to clean off my desk to find my sewing machine and then create a pattern and a purse from said-pattern. I did succeed and now have to make five more purses…but as I have a few days I can share this little story from tonight…
I had gone out to show off the purse to the playgroup-mom that ordered them to make sure she liked the design before I made all six. While I was there my phone rang – it was Archie from home. Immediately after a standard greeting and an “are you on your way home yet?” moment he tells me that Angel scared the daylights out of him tonight.Â
There is a Dora doll. Dora showed up in Riley’s easter basket a couple years ago and ha been passed on to Angel. On this Dora doll is a tag…a long tag. In the past two years the tag has been worn down and is a little threadbare, but still firmly attached.
Archie had settled in to watch a movie after I left, when suddenly he heard, “Daddy, help! Daddy help!” Angel was calling from her bedroom, so in the bedroom he went. He found her thumb swollen and dark purple.Â
She had laced her thumb into the tag and spun the Dora doll until the tag was wrapped up so tight, Archie couldnt’ figure out how to loosen it. He had to cut off the tag to free her!!Â
So after a stressed out mini rant, Archie concluded “She could’ve lost her thumb if she hadn’t called for me!!”Â
Ah, the drama of Mommy being gone….
**
On a separate note, Riley came home with a note on her daily report: “Riley’s nose has been running green!” Um, couldn’t they just say, “Please don’t bring her in tomorrow”? Would have been so much easier than me having to get up 7AM to call the school and say she’s not coming in…
