by Sarah | Mar 21, 2012 | All About Kennedy, All About Molly, Anger Issues, Autism, Special Needs, Therapy
[flickr id=”6270891807″ thumbnail=”small_320″ overlay=”true” size=”small” group=”” align=”left”]We have known for a long time that our sweet little Angel girl had a temper problem.
Dichotomy that she is – she was the sweetest and smilingest baby ever…then on a dime she would launch into a screaming fit the likes of which I can’t begin to describe. She has the capability to burst ear drums with her high pitched scream. Worse than that, and the part that frightened us, was her tendency to self injure. Slamming her head into the corner of doorways, the floor, our faces. You know, whatever is handy.
We hoped she’d outgrow it. She hasn’t. Fortunately the self-injury part of it is softened down to the occasional digging at her nose until it bleeds. While she still throws major tantrums and fits – they have become the slamming her bedroom door and kicking it and the walls while screaming that life is unfair for a six year old little girl.
Then she started school. We didn’t know what would happen there. Feared the worst.
At her parent teacher conference we learned the truth of it.
When a teacher of Kindergarten children says there’s a temper issue – you know there’s a problem.
Since then we’ve heard little (or rather nothing) else that her temper was a continuing or growing issue. Until last week. Angel brought home from school a permission slip. The Guidance Counselor offers “small group counseling” for the students. Angel had been pegged and needed permission to participate in one.
“Friendship and Social Skills (Communication, appropriate expression of feelings and wants, problem solving skills)”
Hmmmm….Temper much?
So now every week my little Angel goes to a counseling session to try to learn to control her temper.
Tell me why this wasn’t offered earlier? Like when I asked the school about how to help her – or expressly said that she had a temper issue and we needed to know how to take care of it if it was noticed at the school.
Why is assistance only after a LONG period of them witnessing it? Why aren’t we listened to when we expressly say there are issues with our children? Are we not a squeaky enough wheel?
*~*~*~*
(P.S. Riley has also come home this week w/ the same note and will start her sessions on monday. Considering she has autism and spends EVERY recess all by herself – this also should have been offered sooner for her)
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 | Jul 18, 2010 | All About Kennedy, Crap, Cystic Fibrosis, Photography, Random, Therapy, Weekly Winners
All taken w/ Canon Rebel XTi.
For week 7/12-7/18/10
This week was crazy bad (see previous post), but it also had some good things. Today is my birthday and I want it to be good, so I’m trying to remind myself to just breathe and remember the good things. These pictures help.
I did attempt to re-start project 365 this week, but I forgot on Thursday (worst day) and decided to try again next week, so hopefully that will be happening in the next few weeks. I want to get ahead of the game by a week.
I also got a new photo-editing/managing software program this week. I’m wishing I could afford the pro version when it’s time to buy, but I’m afraid it’ll not be happening this year. Either way, I’m loving my new editing software and will tell you more about soon. It’s my new best friend.
Onto the pictures!
Waiting on a train
Spanning the distance
Bridging the Gap
Lines Across the Times
Tying it all Together
Lost along the Way
Pretty Hair for a Special Day
JUST B-R-E-A-T-H-E
(This was the test that determined if she stayed home or was checked in. She just had to breathe well. She didn’t, but she breathed better than last time. That’s my Angel’s RT in the picture with her. She always makes it fun for Angel!)
It’s a lot this week, I know…but Sunday was a good photography day. I ran out and took a little photo walk, thus the railroad theme for most of it.
Go over and visit Lotus for some more great WW’s!!!
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 | Dec 6, 2007 | Therapy
Okay, so I’d never ACTUALLY call my daughter that…or maybe I would…but I’m digressing.
I’m so very not used to this. Denver was (forgive me for saying) the “perfect” child. He never had terrible twos, three’s, or any age. He acts up at the start of every school year…otherwise he’s a great kid. As a child temper tantrums were VERY rare…I never feared going out in public.
Molly is silent 90% of the time. When she was a baby the overstimulation would send her screaming if we went to a restaurant…but mostly I don’t have to worry about her freaking otu in public anymore. She acts incredibly shy. And now, since she’s started preschool a new social side is coming out around people she’s familiar with.
Kennedy. Well, she’s my little B-…snot-nosed brat. And yes, I DO mean snot-nosed.
Yesterday I tried to go shopping. Little One decided she didn’t want to go shopping…much less in Old Navy. Threw a SCREAMING fit. I had her in one of those carts they have…she kept THROWING herself back into the hard plastic seat. Joy.
We left Old Navy, went to The Children’s Place (I have a thing with Children’s place I’ll have to post later)…no carts there, so she threw herself on the floor. MARVELOUS.
Today was PT. She REFUSED to do anything PT…period. Threw huge big screaming hissy fits. Threw herself on the ground. On the couch. Threw toys. Screamed. Threw her head into me.
We finally got her to do some OT activities amid screaming fits. As the therapist was writing her notes, I gave K a little backrub…she had knots from head to toe. After that…guess what? The PT started cleaning up…and K started doing PT activities!!! She was climbing the steps the PT brought.
Yeah. The Little B-…er, Little One decided NOW was a good time…
Snot nosed little brat.
Figures…with three kids I had to expect ONE of them to be a punk.
