by Sarah | Aug 31, 2010 | All About Learning, All About Molly, Autism, Crap, SID, Speech, Therapy
I was not going to write about this because it is a very hot-button issue in our house. But for that fact alone I have to post it. This blog is about us redefining perfect in our lives – and telling how we do it. No subject should be avoided, especially the ones that cut so deep to our heart that we fight about it within our house. Because this is one of those topics w/ opposing viewpoints (at least it started that way) – I’ve asked Archie to write a post as well. I’ll post it once he has written it.
Riley started school a little over three weeks ago.
She’s 5 years old.
She’s intelligent beyond belief. Possibly even brilliant.
Socially…emotionally…well, let’s just say she’s not near as ready.
I didn’t think she was ready. Not for a classroom full of crazy kids (not that they’re insane, they’re…well, for lack of a better term…they’re normal). Not to be expected to be that same normal.
I admit to a bit a bias. Our first attempt at school was not successful. It was developmental preschool, specifically for special needs. Riley lost learning. Her behavior at home became erratic and violent. She was withdrawn before Christmas.
Now she had to go to ‘normal’ every day kindergarten…with neurotypical kids.
I wanted her evaluated first.
School said no dice – she has to be in for 6 weeks so we can see how much is normal reaction/adjustment to being in school.
It went against what my gut said – but after much debate and discussion with Archie (who believed just as strongly that she had to go into school), Riley was enrolled. Literally the day before the first day of school she was enrolled & given a teacher whom we met that very night.
We ‘warned’ her teacher, explained how Molly was. How they wouldn’t evaluate her and just gave her a heads up on what she might expect.
The next day school began.
The roller coaster ride took off so fast I couldn’t catch my breath.
Excitement. Anger. Glee. Stress. Happiness. Stubborn refusal to attend. Joy off the bus. “I don’t want to go to school.” “I had much fun at school.” “I miss you Mom.” More stress. Increasingly erratic behavior at home.
Every day is a struggle to get her to school. She doesn’t want to go.
Then off the bus it’s happy and chatty.
Within an hour I’m fending off the hounds of hell. Trying to keep calm.
Suddenly Riley’s aversion to loud noises is back with a bang. At school the teacher has given her leave to put herself in time-out with her own personal basket of Sensory Diversionary toys when things get ‘too loud’ or ‘too crazy’ for her.
Then we get a letter from school, informing us that they are recommending Speech Therapy for her. That (surprise of surprises) she qualifies!
Well, DUH.
The more I thought about it, the more annoyed I got.
I could have told them that. If they’d evaluated her BEFORE school, all of that would be known. I don’t NEED her to be forced into ‘normal’ behavior for six weeks to tell you how she’ll react and what she needs. Don’t make me wait (at least) 6 weeks to get her what she needs. To make her teacher fumble around for (at least) 6 weeks to try to figure it out. Don’t make an innocent child suffer for 6 weeks for something I could tell you NOW. TODAY.
It’s all rotten.
And I still hate it. My gut still tells me to get her the hell out of Dodge until she’s ready.
Before my eyes she’s unraveling again. The balance we achieved has been thrown off. I don’t know if we’ll ever find it again…whether she stays in or gets out…the balance has been shifted forever.
We’re still in the middle of this process. Decisions are being made and changed, and we’re trying to find even ground again.
If there is such a thing anymore.
by Sarah | Nov 11, 2009 | All About Kennedy, Cystic Fibrosis, Failure to Thrive (FTT), Hypotonia, SID, Speech, Therapy
Angel had her go-round with the Developmental Pediatrician on Monday. Avoiding discussion of the horror of a day surrounding said appointment, I’ll get right into the actual facts and (lack of) diagnosis!
The short of it – we may never know what causes our little one to struggle. It may be that she was born so early, or just a quirk in her brain that makes her crooked physically and mentally.
However, that won’t stop us from a) looking for a cause and b) getting her all the help she needs.
To that end, the Ped did see her unevenness in her gait (we walked and/or ran down a long hall to display), and tone. She again listened and heard all I had to say on everything we’ve been through the past couple of years with her. She gave advice and took a good look over her, just as she had with Riley.
Her solutions here were a little more complex, but not by much.
1. We are doing an MRI on her brain. Taking a good hard look to be sure that there is nothing specific or noteworthy that could have caused this.
2. We are doing a full-run genetic test. AFter a pre-approval by her dual insurance plans, of course.
Why are we doing these? Because the ped recognized that almost as much as we want to learn the HOW’s of Angel’s issues…we also would like to know WHY’s. She said that while it is likely just her early birth date, we should exhaust the remaining bit of question.
And onto the HOW’s…
1. Restarting Speech Therapy
2. Restarting Occupational Therapy
3. Having a psychological exam done to determine need for Behavioral Therapy
4. Returning to the Feeding specialist for monthly visits
5. Restarting Physical Therapy
All of this will be done at Riley Hospital, and all should be covered by insurance (if not primary, then secondary) as part of her diagnosed issues. Thank goodness for Indiana’s wonderful Special Needs insurance (now if only we could get Riley qualified for it *sigh*)…it has saved us more than I can ever say.
And that is where we stand now. Therapy, therapy…and more therapy. I’ll be doing a bit more traveling once it all gets started…but if it helps, it’s all worth it.
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 | Apr 24, 2009 | All About Kennedy, All About Molly, SID
With SID you have two camps – the sensory AVOIDERS…and the sensory SEEKERS.
I have two SID girls – one Avoider (Riley) and one Seeker (Angel).
Up until a year ago I was certain that having the Avoider was the “Worst” of the two. Social situations, eating, playtime were all such challenges. Planes flying overhead were a nightmare for weeks, trucks driving by.Â
Coping mechanisms were learned and slowly with time it became less of an issue.
Then we had our Seeker. I thought it was tough to handle when part of her seeking techniques were ramming her head into everything. Screaming at the top of her lungs. Throwing everything. Breaking everything.
But as much as we’ve been able to curb (some) of these events – in the past year we’ve had the occasion to experience the worst of the SID habits.
Smearing poop.
Poop on the walls, the beds, the clothes…IN HER MOUTH. It makes me wonder for her intelligence (sometimes when I’m most stressed) – and my sanity. It is one thing that I can seriously get truly and horrifically upset and disgusted for….
And it’s one thing that I haven’t the foggiest idea how to stop. The taste obviously doesn’t put her off. The smell. The feel. None of it.Â
I’ve found out through research and searching that this isn’t uncommon – but is ALWAYS stressful for the parents. I also see posts of some children doing it even after potty training, and beyond.Â
So for now I sit and research coping mechanisms again…although this time, I search for coping mechanisms for myself and my husband. I don’t think either of us look good bald.
by Sarah | Nov 13, 2007 | SID, Terminology
For the first TT, we’re going to cover SID – Sensory Integration Dysfunction (also commonly called Sensory Processing Disorder).
Definition of SID:
A neurological disorder causing difficulties with processing information from the five classic senses (vision, auditory, touch, olfaction, and taste), the sense of movement (vestibular system), and/or the positional sense (proprioception).
The layman’s definition: Difficulty processing sensory input.
SID can be a standalone disorder, or it can be symptomatic of other disorders (such as forms of PDD, Tourettes, or even dyslexia).
SID is usually diagnosed by an Occupational Therapist.
Riley started school a little over three weeks ago.