by Sarah | Mar 3, 2014 | All About Molly, Autism, Redefining Perfect, Russell-Silver Syndrome, Special Needs
One of our family’s favorite board games is SORRY! We play round after round on family game nights.
One thing no one ever likes is getting “Sorry’ed” right back to their start. One or all of us have been known to whine and groan over the inevitable gleeful “SORRY!”
No one likes being told to go back to start.
Now, that’s what we have to do.
Almost six years ago Molly received her “official” diagnosis of Autism (as well as Russell-Silver Syndrome). We foolishly felt relief at the diagnosis thinking now we could get help. We didn’t know what the road ahead of us held.
Now we’re drowning.
Since Molly is so high-functioning (possibly Asperger’s?), that our concerns are often set aside by others (i.e. the school) until a specific behavior presents itself. Every year we go in and try to be prepared for everything, but one of a few things happens.
- She starts off so off-kilter by the change of schedule/new event that any quirk seems mild by comparison
- Her behavior is so beautifully spot on and normal that any deviation is like a sudden attack on everything we thought we knew (or rather, they thought they knew)
- A new behavior develops that not even we suspected
This year we have reached a breaking point. The school has set her on a new behavior model because she degraded so tremendously after Christmas break. She isn’t listening to her teachers, she’s refusing to do anything, and she is avoiding tests like the plague (w/ standardized testing in a few weeks, this is not good, even w/ IEP accommodations).
The development of a possible learning disability on top, plus lack of focus, and weird tics and behaviors at home had Erik and I at our wits end.
We called the doc and got her in for her annual physical and set about finding out the next step.
Our pediatricians best advice?
SORRY! GO BACK TO START!!
So we must return to the geneticist that gave us our initial diagnoses. We’ll need to use him to unravel the confusion we’re currently in. There may be treatment for ADHD, we may see about getting her into a local ABA treatment, we aren’t sure what’s going to happen, but we have to go back to the beginning.
Again.
It’s a never ending process of hurry up and wait.
Mostly, Erik and I need to find local support. We find ourselves at such a loss so much, that we’re grasping at straws that aren’t there. We don’t know how to handle things, and that’s something that’s really hard for both of us to admit.
Now we wait until May to meet with Dr. E again, six years after our last appointment. Hopefully he’s able to help not just her, but us, figure out how to go forward now.
All we want is for her to be happy.
At peace.
Peace is so hard to come by.
*~*
Written for Things I can’t Say’s Pour Your Heart Out
by Sarah | Jul 8, 2010 | All About Kennedy, All About Molly, Autism, Crap, Cystic Fibrosis, Hypotonia, Russell-Silver Syndrome
*Otherwise titled “The post in which I piss people off.”
From the time our troubles started, from the time we first realized there was just something ‘off’ about Riley. From the day We realized Angel’s torticollis was more than just a lazy neck and a heavy head. From the day we realized Angel’s cough was going for a month and showed no signs of letting up. From the first time Angel intentionally injured herself. From the first toys Riley lined up. Every day, every night, every in between we are aware. We notice when Angel runs out of steam before she’s played for ten minutes. We notice when Riley is starting to retreat into her shell. When we’re in danger of a meltdown of epic proportions. In danger of a night of a screaming, pouting, angry Riley.
We notice it all.
We see it in the every day.
We see it in the little things.
Every action, every reaction.
It’s a part of our lives. It is our every day.
Then you come along and say “But she looks just fine to me.” Or “She doesn’t seem autistic.” And of course the “She doesn’t act sick.”
I know you mean well. Really, I do.
But I hate it when you say that.
It’s like you’re belittling our every day.
The hours at doctors and specialists. The hours calming and refocusing an over-stimulated child (longest meltdown stands at 36 hours). The hours a day hooked up to machines to live every day. The way I lay awake at night listening to labored breathing. Check temperatures every time we feel a little warm.
I know you don’t mean it this way. I know you just mean to say that despite their troubles they look healthy and happy. That unlike other children with special needs it’s not a visible/noticeable difference.
But I hate it.
Just say they’re beautiful. Say they have a great smile. They look like they’re having a blast.
Don’t contradict what we KNOW. Riley does have autism (no matter how mild). Angel does have CF, and right now she is sick (and we spend every day wondering just how badly it’s holding on).
It is our every day.
We try to live life beyond our labels – and we only succeed by accepting them and integrating what they mean into our lives.
by Sarah | Nov 4, 2009 | All About Molly, Autism, Failure to Thrive (FTT), Russell-Silver Syndrome, SID, Therapy
Last year I was afraid to try again.
Five months ago I took the leap.
Four months ago I was afraid to hope, but felt it creeping in.
Today was the big day. Technically it was the FIRST of TWO big days. We met with the Developmental Pediatrician. It was a scant hope, but it was my last ditch effort. The final specialist in a long line of specialists and the last thread of hope in a dim and dismal heart.
I got up and the crack-of-dawn o’clock and hopped in the shower. I got the girls dressed (In-Laws were sick so the 1 child at a time ruling had to be abandoned), fed and in the car. Along the way I stopped and used my gift card from the Moms Marbles twitter party last month (thanks, ladies I loved my mocha!!) at Starbucks and we headed up to the North Side of the city. We arrived perfectly on time and headed back for Riley’s appointment at the exact time we were supposed to be in.
And we waited. and waited. and waited. 30 minutes later the nurse popped in to tell us the doctor had gone to the wrong office. So we waited another 30 minutes and the doctor showed up.
It was worth the wait. It was worth the 4 months it took to get into her office to even see her. It was worth the hour wait. Why?
For an hour and a half – a FULL 90 minutes – she sat in that room. She never left. She sat there. She listened. She talked. She HEARD me. After years of frustration and fears…to be HEARD…that is the most joyous part of it.
She looked over Riley – took a full history asked many many questions – questions not even I could remember the answers to.
We have confirmations, we have suggestions…we are feeling hope.
I go back on Monday with Angel. At that point the doctor will give me a list of items from today’s visit where she’ll write down EVERYTHING we discussed today. Suggestions for therapies, help for insurance/assistance, suggestions and numbers for groups not just to support Riley (and Angel when it’s her turn) – but to help US cope. The adults.
Do we now have all the answers? Heavens, no. But this doctor is helping us define a path. For each girl, individually. She is listening to us.
And that…that is the most wonderful thing in the world.
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 26, 2007 | RSS
So now that we know some of the signs and symptoms of RSS..how does it affect us? How does it affect me, as a parent…and Molly, as a toddler? How can certain symptoms affect your life?
1. Hypoglycemia
- Can cause child to wake frequently at night, past a year of age
- Can cause extreme crankiness that’s eased with feeding.
- Produces ketones in the urine
- Makes it difficult to wake up in the mornings
- Excessive Sweating
Molly had all of these (well, besides the ketones…we never tested for that). When she was about 18 months (a year ago) she suddenly started waking just about every night at 2-3AM…MOANING. I had to feed her every night at 1AM for a very long time to get her to sleep through the night.
2. Lack of interest in eating
- Enter vicious cycle. Your child has a lack of interest in eating…it makes them eat little, which causes hypoglycemia, which makes you need to feed the child more frequently.
- You have to beef up the calories of every bite. Welcome butter, sour cream, dry milk, wheat germ, peanut butter (if allergies are not present), dry-milk…and the wonderment of DuoCal ($25 a can!! TOTALLY not covered by insurance! YAY!)
- The other vicious cycle – no interest in eating, but they have to eat, so you try to get them to eat smaller meals more frequently, so they assert themselves by refusing those meals, so you have to try to supplement more…and round and round and round!
This is STILL a sticking point for us. Molly is now a little more interested in eating…but I swear her stomach is the size of a peanut. After just two chicken nuggets, she’s full (that was her lunch today). She will still drink us out of house and home with the milk, though (chocolate only, please!)!!
3. Oral Motor and Speech Delays/Fine and Gross Motor Delays
- Therapy, therapy, therapy.
- Did I mention therapy?
That’s how we’ve come to have our life affected by this. Of course, on the flip side…some of these delays are enhanced in our case by the Autism. While most RSS children grow beyond these delays to lead ‘normal’ (we really use this term loosely in our house), healthy adult lives…we’re facing a slightly more difficult hurdle.
4. Physical aspects
Currently we have little repercussions for any of this. I know for my DH he faced a myriad of issues because of his appearance (he still doesn’t believe he’s attractive)…and he fears the same for Molly. I have to hope that how we treat the (relatively) minor physical abnormalities she’s facing will help determine how she deals with them. Me, I don’t notice these so much…because she is beautiful and they are rather minor…well, except she appears frighteningly skinny 🙂
5. Precocious Puberty
Yet another thing we aren’t facing currently…she is only 2.5 *lol* I have to admit…I FEAR the day that this happens…especially since we still aren’t sure about the severity of her autism. BUT…I suppose it’s something we’ll deal with soon enough (that is TERRIFYING!!!)
Those are the key ones I can think of now. If I forgot anything please feel free to nudge me and ask…I’ll be sure to add it!!
One of our family’s favorite board games is SORRY! We play round after round on family game nights.
