Saturday, May 2, 2009

Welcome to the puzzle

For someone who never liked blogging to begin with, I find myself thinking about this blog and what I'm going to say next quite a bit more than I should. The problem is, I have SO MUCH to say on the topic of autism and our journey with it, that I could write a book. And it would be better than Jenny Mc Carthy's. Except she has those boobs that really help her market her, um....wares. But I digress, as usual. And don't get me wrong, I give Jenny Mc all the props in the world for bringing autism to the forefront of the media. I just don't like her books.

So I think today's topic will be just shaving a sliver of ice off the berg that is ~ feeling helpless when it comes to your child. ESPECIALLY but not limited to, your special needs child.

Just over a month ago, Luke was in the hospital with some WICKED flu. He could not even keep a tablespoon of water down. Until this time, Luke had never even thrown up in his life. So again, probably not something the typical parent gives a lot of thought to: "how will my child respond to the sheer act of throwing up?" "How can I even communicate the importance of my child trying to drink something?" "How will he tell me what's hurting?" But alas these are all thoughts we were facing. He cried when he threw up, and generally seemed really confused by what was going on. He refused to drink anything (more on that later) and all he would say is, "Ouchy boo boo" which was enough for me to know that if it hurt ANYWHERE, we needed to get it taken care of.

By day 3 of our flu adventure, Luke was walking around with a washcloth in his mouth and refused to speak or release the washcloth for any reason. Took me 2 more days to figure out why.

At about 2am on Wednesday morning of that week, I could not get Luke to stay conscious for anything. He had already been sleeping for 18 hours and I was freaked out. So after the hullaballoo and drama of getting Jared to Myra's house at 3am, I drove Luke to the closest hospital, which, for the record was NOT Vanderbilt. And don't forget, in all of this I had to pack a bag with every possible thing that Luke would ever want to eat/drink and any comfort item which might even potentially make him feel better. With a bag heavier than Luke (I'm not kidding), off we went.

Although everyone was extremely friendly, they were NOT helpful. Because Luke has autism, they didn't want to put an IV in his arm to get him rehydrated. I SWEAR. When the doctor left the room, the nurse very kindly explained to me that this (smaller) hospital was just not equipped to deal with special needs circumstances. Um, WHAT? That my friends, is a blog in and of itself. Maybe several posts, I'm not sure. They convinced me that he was "borderline" dehydrated, not quite close enough they felt they needed to force this issue (chickens!) and sent me home with phenergan suppositories (anti-nausea). WAIT! They didn't send me home with SQUAT! They gave me a prescription and kindly informed me that the 24 hour Walgreens attached to the hospital was no longer, "24." Keep in mind it's 5am. Now I get to drag my sick child BACK out later to get this thing filled. And then attempt to stick it in his butt.

Really?

To speed up the story, by Friday morning we were at Vanderbilt where Luke was admitted IMMEDIALEY for "severe dehydration" and promptly given multiple bags of IV fluid, antibiotics, anti-nausea drugs, and....morphine. By the time they checked his throat it was completely covered in white pus filled bumps (ewwwwwwwwww) and was starting to bleed. Back to the washcloth ~ the poor kid didn't want to swallow and he used the washcloth the aborb the saliva so he wouldn't have to. Now that's smart!

People ask me all the time: What is autism?
Autism is when your child can't or doesn't know or for some unknown reason doesn't want to communicate what's hurting him. Autism is when your child can't say "Mom, my throat hurts," and so he shoves a washcloth in his mouth and hopes that someone will eventually figure it out. Autism is when your child can't say, "I don't feel good," "I think I'm going to throw up," "My tummy hurts."

Autism is when you take your child to a hospital and they don't want to put an IV in him, even though it's what he really needs because they are afraid of how he will react.

Autism is when we thank God for hospitals like Vanderbilt Children's who not only didn't need any further explanation after "Luke has autism," but handled him with kid gloves from start to finish and made our time there as comfortable as possible. Autism is when you want to hug the nurses for understanding without saying a word.

So, I think we've covered the hopelessness issue right? Well when we returned from the hospital and Luke was once again jumping on the trampoline, I booked us a trip to Atlanta. Luke LOVES fish and we had been talking for awhile about taking the kids to the aquarium. So by golly, if I can't make you feel better when you REALLY need me to, then I'm going to make you happy when you already feel fine by taking you someplace really fun and cool. No really, that's the logic. It's kind of like feeling guilty. It's helplessness that bleeds into guilt because you feel like somewhere deep down inside you should have been able to figure this all out by Tuesday and not make the child suffer until Friday. So out of this need to somehow make it all right, we ended up having a pretty cool mini-vacation.

The trip itself poses some challenges but this post is long enough.

I feel like Luke had a sufficient amount of fun that it will block out his crappy week of being sick and going to the hospital twice~ so in that way, I have helped.

Our lesson for today in "What is autism?" is this:
Autism is when your child can't say, "My throat hurts so bad I can't even swallow." But when he CAN say, "Let's toast to brown drink" at World of Coke on his "make it all better" trip.

Welcome to the puzzle.

8 comments:

Myra said...

I am crying.

Renae said...

Oh my gosh, WOW...you need to write a book! Yes, it would be better than Jenny McCarthy's books, no doubt! I think there should be a book out there that is a compilation of "stories" told by mothers of children with autism. If there isn't one there should be. Something lesss clinical than most books on autism and more about REAL LIFE. It'd be a good first book for a mom new to the autism diagnosis. The more I think about it...you should write a book! It's great that you guys had a nice time on your trip to Atlanta. It sounds like Luke REALLY enjoyed the aquarium (and the brown drink)! Drake is in love with fish too. When we went to Disney (Drake was three and a half) he didn't REALLY LIKE any of it except for the aquarium! He loved the aquarium so much that we stayed there for a very long time! Needless to say, he still loves fish. We never even go to Meijer without a visit to check out the fish tanks. By the way, I cannot imagine taking my child to a hospital (A HOSPITAL!)that wasn't "equipped" to treat him. That is just insane. INSANE. Thank God they knew what to do (and weren't AFRAID of doing it) at Vanderbilt! Did I say you should write a book? :)

Joanna said...

I found your blog from Myra's...she and I were/are high school/adult friends. I love her and am so happy she is in your life! I look forward to following your blog and sharing your journey with my friend Erin. She also has a five year old son...Christopher...who has autism. Thank you for sharing your life with us.
Joanna

April said...

Thank you Joanna! It's nice to "meet" you! Please send Erin my way, we're all in this together and we need each other!!!!

C.J. Redwine said...

I also found your blog through Myra's. We're fellow writers and both attend Fellowship. :) I was very moved by your post. I have two special needs kids of my own (not autism) and understand the state of constant awareness, constant thinking through everything, constant evaluation of strategies and the wierd looks people sometimes give me when I tell them I can't go to a Girl's Night until after the homework/dinner routine or everything will fall apart, even with my hubby's loving presence.

I'm going to come back often. :)

April said...

CJ I have heard SO MUCH about you! I hope that we get to meet someday! I keep telling Myra we need to! Thanks for reading!

C.J. Redwine said...

We'll all do a Girl's Night (after 7:30!) sometime soon. Myra and I are meeting for coffee tonight. I'm bringing kleenex and a tranq gun.

Word ver: cowtygr n. A genetically-enhanced hybrid. Part of the bovline species. Particularly conflicted over food sources.

Ford and Kim Turrell said...

April...heartbreaking about Luke's illness and trips to the hospital. I can't imagine...so, so glad he's better. Love that you are blogging!

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