Follow by Email

Saturday, March 3, 2012

Too full....

So, how does one find the "right" clinical trial?  Seriously, I'm the patient here, right, and yet I'm the one researching all this stuff out trying to navigate myself around a public health system that is absolutely mind boggling.  I feel extraordinarily blessed that I have a clinical background with social work. I don't know how else I'd be faring otherwise.

Maybe I'm in denial.  Yeah. Probably am. I'm probably borrowing some level of imagined confidence to shoot out these emails to places like the NIH --- which, by the way, I imagine as these creepy, varied shades of grey institutionalized buildings from the 1950s where they perform all kinds of terrible experiments on people.  I'm sure it's nothing like that, right?  I'm sure there are at least pictures of daisies or a sad clown or two on the walls by now.

*shudders...*  So...very...creeeepy...


As I sit here and sip my Chai Latte with real whipped creme, thank you very much, I'm attempting to ignore the past week.  Really, the past 3 days to be exact. And I really don't like that. I like treasuring and cherishing every day God has blessed me with.  Honestly?  The last three days have been beyond, beyond... I find myself heavy sighing a lot.  I feel my heart pounding in my chest occasionally.  I'm really on edge tonite (and I'm sure the caffeine will help that tremendously! lol).  Rascal #1 is having severe meltdowns that I haven't seen before and they are completely out of the blue.  I had to take him to the ER today because of the 3 he had today alone, his last one took over 2+ hours with full on escalation, self injury... I called his pediatrician after hours to find out what in the hell I could do and also wanted to reassure that nagging voice in the back of my head that I wasn't overlooking a medical problem that could be triggering all of this mess.  The nurse agreed with me and so off we went.  I was really proud of how calm I stayed. Not that I get worked up like you'd think -- I'm not a yeller, or a panicker, I worry.  That's my niche.  But where I stayed was in his head and thought how tormented he must be in that place and how alone and scared he must feel. There was NO WAY I was leaving him there regardless of  how emotionally drained I felt.  It was nothing compared to his pain and agony.  His poor twin was triggered all over the place, reacting, hiding out, trying to escape it in every facet imaginable.

Today 100% of me hated autism.  I rarely ---rarely -- feel like that.  And it really hurt my heart.

He is asleep, peaceful at last, prayed for intensely, and watched often.  His brother, curled up around him, protectively, both, so very loved.  Their mother.... hmmm....

tonite, I'm not so sure.

Still searching.

7 comments:

  1. Oh I feel for you! We've been close..... very, very close in fact to having to take our son to the children's hospital for a meltdown. Luckily, when I was getting to that point we figured out what was triggering all of the weird and erratic behaviors... it had been a medication we put him on to calm some OCD tendencies! Wow. It had gotten to the point where I wouldn't/couldn't/refused to take him ANYWHERE. If he missed the bus, he stayed home from school. I cancelled a lot of his therapy appointments during a 3month period because things had gotten SO bad. Luckily, once that med was out of his system he calmed down.

    I hope he has a better day tomorrow! ((hugs))

    ReplyDelete
  2. Hi Jenn!

    Thank you for this! There has been too many changes at school that I just became aware of this past week and I put a stop to all of them. He's on many medications that have been working beautifully for a long time. Maybe he needs a med change after all this time --- I gave the school a VERY strong piece of mind and now we have an emergency IEP in place until another official IEP will occur. So he will won't come home completely overstimmed. It'll take time but it's so hard seeing him suffer. He is such a happy kid.... he sings all the time, ya know? All the time. Not this week... makes me so sad. This too shall pass, right?

    Warrior Mamas In Arms

    ReplyDelete
  3. I also wanted to say ..... my son started having some HORRIBLE times at his old school (I've since gone and deleted a lot of those posts on my blog, but you can definitely read the ones about his new school). He was FIGHTING every single morning about getting on the bus. The school was always saying "don't let him use the computer, don't let him watch TV, don't let him use your iPhone, etc etc".... saying that he was screaming about getting on the bus because he didn't want to separate from what he was doing.

    Well..... lo and behold, they were WRONG! He knew that when the bus was coming he was having to go to school. So therefore, he fought it... every single morning. Amazingly, that ALL STOPPED the first day he started at his new school and he's been fine EVER since. He separates from whatever activity he's doing and HAPPILY gets on the bus - sometimes laughing and giggling and flapping the whole way.

    I didn't want to change his school placement, but in the long run - it was the best decision we could have made. He's happy and flourishing, Not without some problems still but things are oh so much better. And get this.... all of the behaviors that his old school was experiencing? they're GONE! So, let them tell me again he was the problem... :P ;)

    7years is when things started going a little wonky for us. We managed..... and then oh boy when he hit age 10, everything went crazy. Things are actually settling down for us, despite the onset of puberty! Please let me know if there's anything I can do! :)

    ReplyDelete
  4. To both of you my heart is breaking because I know exactly how that feels. I have never had to take my son to the ER yet for meltdowns. But there have been many close calls. The thing that scares me is that the hospital here where we live has NO idea what to do with him.
    It is so nice to find blogs/ stories that show you that you are NOT the only person out there that has these kind of days. Thank you for sharing!!

    ReplyDelete
  5. Hi Cherisa,

    Oh honey, you are NOT alone. The vast majority of hospitals -- even the Children's hospitals -- don't know anything about autism. I pray all the way there and as I go through every door way that I will encounter someone with a background. We have been fortunate. I have learned to be the biggest advocate for my twins. They have been hospitalized in the PICU every year since birth -- up until 1.5 years ago. Add that with my "don't take no for an answer" personality and there aren't many who can stand up against me LOL. Especially when my babies are sick. This was the first visit (and I'm praying the last visit) to the ER for a meltdown. The close calls are the worst because you hope beyond hope that they will settle and neutralize and before you know it, another hour has gone by.

    I'm so glad you wrote!! Take good care and know we are all family here.

    Blessings....

    ReplyDelete
  6. Aww, sweetie. My heart yearns to give you a hug. A hug that makes everything go away. I know that you wouldn't have your rascals any other way than who they are, but it breaks my heart (and makes me cry) that you have all your other problems to boot. I am so proud of how strong you are in advocating for your sons (and yourself). My prayers go out to you my friend. I love you.

    ReplyDelete
  7. Thank you my sweet friend. This means so much coming from another warrior mama, such as yourself, given your circumstances! We all have our own cross to bear in this life, yes? I'm so fortunate to have you in mine. Blessings on you. xo I love you too.

    ReplyDelete