by Sarah | May 17, 2012 | All About Denver, Cystic Fibrosis, Special Needs
[flickr id=”7215498312″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”left”]It has been barely a year since the diagnosis. It has been almost a year and a half since we started the journey – all because of another round of pneumonia.
Since the diagnosis illness has kept its clammy hands away.
For the first time since the diagnosis, Denver is sick.
It started as what appeared like an allergy but quickly devolved. A mild fever, and an ugly cough. More coughing. Then more.
In a wonderful coincidence there was already an appointment scheduled. So yesterday he went. At the hospital all day running standard yearly tests. Waiting, still coughing, still sniffling, until he could see the doctor.
Within two minutes of her walking in the room she heard the cough. The look on her face said it all – it was ugly.
There is crackling in his lungs (the mucous) and it’s visible on the x-ray.
For now he is home on heavy doses of steroids and antibiotics. The instructions we are used to for the little one now apply to him. “Call if there’s any change” and “Come back in a month” have been said. Unlike her he can take full on pills (HUGE pills, blech), and most of his care is in his own hands. I mean, what teen wants their mom snuggling and coddling them?
There is nothing to panic about. He intends to go out and go through his “Ordeal” for the Order of the Arrow in Scouts despite his illness with his drugs in hand. Just like the diagnosis he’s not letting it slow him down (Did I mention he kicked butt in Track & Field this year? No? Well…he DID).
Still there’s that part of me that always panics. Deep down where I keep it hidden I wonder how/if this will affect the strength of his lungs. If it will change the depth of his illness (currently he’s ‘atypical’ and we like to keep it that way). His lung functions yesterday were horribly bad, so how will he get through his “Ordeal” this weekend…and forcing myself to not be ‘that mom’…especially given the name and motto of this blog (living life beyond our labels gets really damn hard sometimes).
Part of me wonders if he has that internal panic too. Wishes that if he did he would talk to me about it.
But he is a teen. He is stubborn. He keeps things close to the breast.
And he laughs in the face of CF (when laughing doesn’t throw him into a fit of coughing, that is…).
by Sarah | May 11, 2012 | All About Molly, Autism, Crap, Random, Special Needs
[flickr id=”7089103379″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”left”]It’s never a good thing when in the middle of a class ‘event’ with many parents present – the teacher singles you out and pulls you aside before you can leave.
“Just for a moment.”
Last week the class had a field trip.
Field Trip = Change in Routine.
Change in Routine = Over-Stimulated Molly.
The teacher let us know that on the trip Molly had a bit of trouble. She never stopped. Once. Nearly running into the street at one point. If Teacher had to pull her attention away or let go of Molly’s hand for even a second, Molly used that to run off.
Eventually one of the parents caught on and became Molly’s ‘keeper’ for the rest of the field trip – but it was a bit of a hectic day.
So now it’s been decided that going forward Molly will need a ‘keeper’ on any field trips. It’s not something that’s likely to end up on the IEP, but it’s something the teachers will be aware of.
It is our decision to also make them aware that I will be her ‘keeper’.
So I will be the official Molly-Chaperone for all future field trips.
Even the ones I usually avoid.
Fun.
by Sarah | May 8, 2012 | All About Me, All of Us, Crap, Random, Special Needs, Writing, writing tips, WTF?
[flickr id=”6271416484″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”left”]When I was young I used to love the Limbo. I was really good at it and always won.
As an adult, as a parent of special needs kids, as a human being – limbo has taken on a new meaning.
It’s the in-between.
The period of nothing.
No answers.
More questions.
Infinite waiting.
In my personal life. In my pursuit of a writing career.
Limbo now consumes my life.
Tests for the kids, my husband, myself. Infinite questions on our health, our futures.
Submissions of my work to strangers for judging. The ones that might hold the key to my writing future.
I hate limbo.
If I didn’t love writing so much I’d throw in the towel and end it just to give up another source of the interminable status of ‘waiting’.
I’m not about to do that. Writing is a part of me. It gives me release and happiness.
So I suppose somehow I have to turn this new definition of Limbo into something I can live with.
I just can’t see how to make it a party game.
Maybe a drinking game…
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 | Mar 7, 2012 | All About Kennedy, Crap, Cystic Fibrosis, Special Needs, SSI, WTF?
[flickr id=”5293689107″ thumbnail=”small_320″ overlay=”true” size=”small” group=”” align=”left”]I have spent the past 3 months jumping through hoops. Doing everything the government asked. Going to appointments that seemed ridiculous. After all, she is covered by SSI for Cystic Fibrosis. It’s a set diagnosis. It’s not going to change.
I thought it was just normal. Three years had passed, they did a re-evaluation and we’d go on our merry way as we had been.
I never imagined we’d get a letter declaring the cessation of benefits.
That somehow, according to the government, Cystic Fibrosis is a condition that stands the chance of improving.
That somehow, 2 hospital visits, the addition of a very costly monthly med, a decrease in vitamin levels, a continuing need for nutritional supplements all equal an “improvement” in her condition.
I’ve already met with the lawyer.
Filed the appeal.
I get to go to court (woo-frickin’-hoo).
Continue to jump through their hoops. This time w/ a good lawyer on our baby’s side.
Stupid government.
by Sarah | Jan 17, 2012 | All About Kennedy, All of Us, Crap, Special Needs, SSI
[flickr id=”5888961016″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”left”]Four years ago we jumped through hoop after hoop. We went to all of the exams, evaluations and tests needed for Angel to get qualified for SSI.
We were denied.
It took getting a disability lawyer to send in the paperwork for them to say yes.
Three years since our official qualification (thanks to the lawyer & the lovely fee they took out).
Now we are up for review.
For CF.
CF is not currently a disease that gets BETTER.
So we jump through the hoops again.
Pray that this time we aren’t denied again and are forced to go back to the lawyer to push the government back into reinstating what we’ve been qualified for for years.
It’s not like we’re trying to bilk them. If we were we’d reapply for Riley. We’d apply for Brandon. I’d work if I could so we didn’t need the SSI, but as we so recently realized that’s not a possibility if we’re to keep Angel on the insurance we so desperately need to keep.
I’m tired of jumping through senseless hoops.
Angel has CF. What is the purpose of a Speech evaluation and a psychological exam? They have no bearing on her disease at all. None.
Stupid hoops.
