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Weathering the Storm

Storm of love
By Cathy Jameson

This time of year while many families are getting ready for a new school year, I’ve been seeing lots of lists being shared.  They’ve included simple Back-to-School Supply lists, the very important How to Prepare for an IEP Meeting lists, and several tried and true Easy 30-minute Meals lists.  Since we’re still in hurricane season here on the east coast, I saw another one a few days ago that caught my eye.  It was an Are You Ready to Weather the Storm? list.  With how busy our week’s been, to include some medical issues that I hadn’t anticipated, that last list about weathering through the storm got me thinking.  You know what that means.  It means that I had to write about it!  

Weathering the storm.  Some days, what we are going through feels exactly like a storm.  We experience the calm.  Things are great.  But then, there’s a subtle change.  An odd behavior.  A breeze picks up.  There it is again.  Electricity’s in the air and the sound of rolling thunder can be heard off in the distance.  A meltdown…why?  Something is brewing and could hit close to home.  He was so happy earlier.  What happened?  We prepare ourselves for the inevitable–rain, wind, lightning, and more.  Crud.  A seizure.  Some storms are quick and leave hardly a trace beyond rain-soaked streets.  Other storms leave a path of destruction in its wake.  Kids, we need to tiptoe again today...  

Since we as a family are doing this life with autism thing together, I thought I’d ask my kids for some help with today’s post.  They tend to bring me exactly what I need after a full week like the one I had – they shower me with a dose of hope.  They do that by telling me things that I (and we) can do next time.  What do we want to do for next time?  Sometimes it’s something different, or something better, or something new that we haven’t tried yet.  So, this week, after getting some quiet time with Ronan’s little sister late on Friday night, Izzy and I chatted about how busy we’ve been and also how very focused we’ve needed to be.  Here are her thoughts.  

When the seizures come: First, we see what kind of seizure it is.  If we see that it’s a photic-driven seizure, like the Cj trainones Ronan’s had while we we’re driving, we try to cover his eyes as soon as we realize it’s the lights triggering them.  We help him stay calm, we do his countdown, and we keep track of how long seizure was.  Remember when we went through those tunnels on our vacation?  We knew he could have a seizure, so we made sure ahead of time to protect him.  We knew to pay attention for when we went back through the tunnel on our way home also.  For afterwards, when it’s over, we pray, we comfort, we help, and we hope that that seizure was the last one.  

When communication attempts fail:  When that happens, it might be that he’s hurt and he needs help but doesn’t know how to ask.  It could also be that something he doesn’t like is near him, but he can’t tell us to take it away or move it.  We look up the sign to try to figure out what he’s saying or we use environment to tell us what could be bugging him.  What might have scared him?  What did he hear or what is on him (clothing or shoes) that is irritating him?  Then we do our best to remember that he might not like to see or hear or touch that thing in the future so we keep it away from him.  

When the behavior is off:  Ronan’s a happy kid, but sometimes he will have a bad mood.  He woke up in a bad mood one day this week.  When I saw that, I gave him space, but I also kept the ground rules. He wanted the iPad, but I made sure he ate his breakfast first. That’s the same if he wants to play the Wii, I know he has to do his therapy homework before he plays. We do the “First the requirement” (like eating), “Then the fun” (like playing).  That works great a lot of times, but if he uses negative behavior, I know that we try to redirect him.  First try to use his words, like a sign, and then if we need to, we distract him with his favorite music.  He loves Mozart.  When he hears it, it helps him get back to being calm again and able to restart whatever he’s supposed to be doing.  

When we’ve tried, tried again but nothing helps:  Oh, we motivate him.  We motivate ourselves.  We know he can do some things, so we always give him another chance.  If we run out of chances, we teach or reteach him.  We break it down again to simpler steps, and we never give up hope. Ronan may not know how much we work for him, but we do it anyway because he needs us to.  

Cj vanWhen we want to throw in towel:  Well, we just don’t.  Our goal is to help – to help him learn to speak and to try to communicate verbally.  We try to help him understand everything.  We try to help him to remember to use his words not aggression to get his point across.  It’s hard because we’re able to do things faster than he can, but we go at his pace because he needs us to support him especially after he’s had seizures.  

In sharing those thoughts above, I can see that Izzy’s offeredsome tips as well.  Consider them Sweet Tips from a Super Sweet Sibling.  I like that they include ideas of what we may try to do if, and when, another next storm hits. I know that she’d love to always feel that calm, but she know that life with autism – and even life without autism, could include another storm or two.   

Ronan’s little sister is only a kid.  She has the heart of a saint and the determination of an adult though.  Full of love and full of spunk, that girl knows how to keep Ronan happy.  She knows what to do in a medical emergency, too.  What a joy to hear her talk about how ready she is to ride out the next storm should one come her brother’s way.  She, and we, may not get through every storm unscathed, but at least we can work on getting through it together.  

Cathy Jameson is a Contributing Editor for Age of Autism.

Comments

MamaBear

Thanking God that you and your children live the love Ronan needs!

Jeannette Bishop

I love hearing how your family rallies around each other.

Benedetta

Way back in 1997; Japan.
http://www.cnn.com/WORLD/9712/17/video.seizures.update/

2003; my daughter's boyfriend loaned "Sonic the Hedgehog" game to my son. What do you do when he feels a seizure coming on, and instead of laying down, he jumps up to stand, and tries to fight it off.

Or they love water so much, that at times I think the joy of being in it triggers a seizure, or lack of sleep, or---- a row of oak trees all lined up on a street, or as one friend's son seized every time he ate a candy bar (corn syrup what it turned out to be), or ----


Mine is always starved to death after coming out from under a seizure.

At any rate Cathy this is very deep and moving article, and so is John Stone's analogy.

John Stone

Mozart always loved analogies between psychological states and the weather - though not alone among classical composers.

In his opera Idomeneo, King Idomeneus of Crete, returning from the Trojan war and caught in a sea storm, musically portrayed, promises Neptune that if he spares him he will sacrifice the first living being he encounters on dry land - which by dramatic irony is his own son Idamante/Idamantes. It may seem one of the more remote of Mozart’s dramas, but it isn’t: Mozart knew how easily the political class sacrificed people to expedience. Today, we see our politicians march on regardless even when they have sacrificed their own children (at least Idomeneo lives to be horrified by his choice), while the rest of us have to face the storm.

Thanks Cathy,

John

Gayle

Cathy-You have a beautiful family and Ronan's siblings are a blessing for Ronan and for you. I have an adult son with autism who also has epilepsy so I understand what you are going through. God Bless all of you and all of our children impacted by autism and epilepsy.

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