Sunday, May 11, 2014

Mother's Day 2014: A Few Ups & A Huge Down

The Ups & Downs of an Autism & Epilepsy Life...


Today is Sunday May 11th.

It is Mother's Day. It is also the day before Kyle's 11th birthday.

The plan for the day was for us to have a bunch of family over for brunch to celebrate the moms and to celebrate the king's birth.

But the day started out with an unexpected unwelcome old nemesis.

At about 4am this morning Kyle burst into our bedroom and jumped in to our bed and went right back to sleep.

He hasn't done that in a while so I didn't force him back to his bed like I sometimes do when he's in a pattern of doing that a few nights in a row.

It's a good thing i didn't because at about 7am Kyle had quite a seizure. The worst, longest one he's ever had. It lasted close to 3 minutes. 3 minutes of him lying there with his eyes rolled back and breathing strangely.  The VNS Magnet didn't really stop / shorten it.

It was long enough that we almost gave him this strong, emergency anti-seizure med that we have on hand for seizures lasting longer than 3 minutes. It is a rectal medication meant for these "breakthrough seizures" and it is supposed to stop them cold.

But as wifey was reading the directions and preparing to give it he came out of it.

But the whole thing was scary. It was a return to Seizure Street in a big way and we haven't seen any of these type of seizures (of any length) in months.

The ones he usually has these days are quite pleasant actually. He gets a weird smile on his face and looks a little tipsy for 15 seconds or so and then he usually snaps out of it.

But this mornings was the real deal. Long, scary looking, and towards the end he peed himself.

So needless to say we were on edge...but we didn't change our plans.  We figured if we're not taking him to the emergency room then why not have the celebration.  He'd probably enjoy seeing everyone in his own way and with more people here their would be more eyes on him anyway.

So from 7:03am til 11:30am one of us stayed with him while the other one got the house ready for company.

And so then 11 people came over for brunch and birthday cake.

We had a full house from about 11:30am - 3:00pm and Kyle had an ok time.  He seemed his usual, crazy, breath holding, happy to see everyone but not necessarily be in thee same room with them self.

And no other seizures that we saw.  And while we told our siblings about that morning's scary seizure activity.  We kept it from our folks cuz we didn't want them to worry.

Anyway, everyone had a nice time with coffee, buns, rolls, fruit, bagels, donuts, quiche, etc and Kyle got some cool stuff for his birthday....clothes, shoes, etc... 

Plus a sand/water table for the backyard from his aunt and a bunch of Sesame wall decals from wifey and me for his playroom wall.  



And obviously these were his 2 favorite gifts.

Yes he may be turning 11 but he'll probably be a toddler forever...

:)

Anyway, everyone left at around 3pm and then we set up the sand/water table in the backyard and he had a blast playing with it for over an hour. 



But after saying "don't eat the sand" for the 20th time I decided that he had eaten enough sand so he and I came inside and I gave him a bath while mommy sat in the sun in the backyard for 30+ minutes... her first real break on Mother's Day.

After bath he had dinner, 6 blueberry waffles and 7 pieces of bacon. 

And before we knew it, it was 7:30pm and medicine and melatonin time.

It is now 9:39pm and I'm writing this in Kyle's room so I can watch him sleep.  Whenever he has a big seizure or a big cluster of little seizures we go thru a phase where we feel like we need to watch him 24/7... but usually within a few days he's back to normal...(knock on wood)

And 9:45pm and he just had another one in his sleep as I'm writing this...lasted about 60 seconds...son of a bitch...

Anyway, that was (is) our crazy Mother's Day. 

Tomorrow is Monday May 12th and the beginning of what is bound to be a busy week starting with Kyle's birthday and ending with his IEP meeting on Friday with probably lots of calls (and probably appointments) with Kyle's neurologists thrown in between.

Anyway, hope y'all had a good Mother's Day and have a great week coming up!

Autism Daddy out!

THE END

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24 comments:

  1. Big hugs to you and your family. .

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  2. Hey AD - Does Paula do any seizure detection with Kyle? Or is she mostly a companion/behavior disruption dog?

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  3. Wow. What a day... I don't know how you do it. My oldest son has autism. He will be 13 in July. It is overwhelming at times. He isn't completely non verbal but he is limited in communication. You are a strong person to have everything you have on your plate. Seizures are scary. We have a yellow lab who is 8 that has had a few seizures and it was so scary. I can't imagine if Hunter had one. So happy that yall still had your celebration and you wife was able to get a break on mothers day. Hang in there. I know it sucks. When ever you have a set back like that it just sucks and its not fair.

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  4. Hi autism daddy. I wonder why you don't give the king the diastat right away? Story is too long but our son, who just turned 19 and is still into Barney and Sesame Street, had Lennox-Gastaut Syndrome (he has C.P. from birth, cortical vision impairment, seizures, speech and developmental delays). His seizures would not stop without diastat, sometimes two doses, and he would stop breathing the entire seizure. He also has the VNS, takes meds, and was on the ketogenic diet for six years. Odd thing about our son is once he hit puberty his seizures all but stopped when we were prepared for the opposite to happen. Anyhow, just curious about waiting for the diastat. Thank you!

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  5. Been there done that! It all sux but I will care for my son till death due us part! And I do it ALONE! Seizures are a bitch and so hard to watch. But in the long run Im just happy to know that I m here caring for him giving him the best life possible. To hell with the rest!

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  6. I was told to wait and time the seizure..if the seizure was over 5 mins to give the up the tush one....when my son wont drink his triliptal after a few hours I give him a clozepam melting pill(spelling?) to prevent one...or if he has a second one no matter the length he get the up the tush one to break the cycle. Its a full time job this mess!! So AD what do they tell you to do please?.

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  7. Use a baby monitor at all times so you can hear him in his room if he has a seizure!!! I have used one since my sons first one. They work great. A seizure is something you have to know about!!

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    1. After 19 years we STILL use the baby monitor. :-)

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  8. :`( I haven't read through all the blog entries, I am aware of your position about God doesn't give us more than we can handle, blah, blah, blah but I really do have to pray for your family. That is just what we do. I know that we can't do much of anything else for you but my heart hurts for all of you. To say that it is difficult being on the sideline as a loved one goes through something like this is a huge understatement. All I have to offer is our thoughts and prayers for healing. Big huge hugs from Ohio!

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  9. Sending positive thoughts and many prayers for the king your way.

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  10. How frightening. I just cant imagine. I have no other words or advice but wanted to send (((hugs))) and a message of support.

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  11. I am so sorry you and your family had such a very difficult day. Breaks my heart. Here's hoping for wisdom from the neurologist and no more seizures (long ones at least!).

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  12. WOW , what a rough morning ! Going through with the Party was perfect, you had more support and I'm sure everyone is well versed in "Kyle". The wall décor is AWESOME ! Josh is 15 and loves Mater from Cars, I'm going to see if I can do that ! Sand table is definitely a hit ! Josh isn't a swimming like Kyle, more of a splasher , and float in the tube guy. He loves the sand ! I have one of those old turtles with the lid and put sand in it for him. He's to big to sit in it at 5'6 but he sits next to it and plays. Happy Mothers Day to your amazing Wife and Happy Birthday Kyle ! You both inspire me to more and make the most of it, but at the same time it's okay to be aggravated and get mad ! Thanks so much for your Posts and Blogs ! :)

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  13. You two are awesome parents!

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  14. Where did you find that sand and water table? It looks like just the top of the table with no legs so you can put it anywhere. Right? My kids are getting older and my son still loves the sand box and water. Would love to get it for him if you have a link. And Happy Birthday to the King!

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  15. Sorry about the seizure. Sounds terrifying. Hoping things get better for you guys on that front. And hey, our autism King shares a birthday with yours, but two years older - we have a teenager in da house today! Hope you guys have a great, seizure free day today.

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  16. God bless your family. I am an SLP and some of my students have nothing that really holds their interest. It is good he has definite likes, and being able to play for an hour is amazing, even if he eats the sand! I learn so much from your blog, as i have three neurotypical grown kids but work with about 45 children and adults with ASD.

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  17. Some people with epilepsy can sense in some way they are about to seize. Maybe that's why Kyle came to your room, he woke up.. Sensed it and wanted to make sure he was near you when it happened.

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  18. I hear ya on the L-O-N-G seizure!!! My son's seizures were always almost 4 minutes. Scary to watch! Love (& STRENGTH) to you all !!!

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  19. I'm sorry the seizure was so bad :-( but glad that he had such a wonderful time the rest of the day. My husband hasn't had a seizure in over two years today, knock on wood and pray to God that I haven't jinxed us. But, when he was having them he'd have those big ones every day sometimes several a day. A six foot two two hundred plus pound man dropping and seizing is violent and horrible. But, I learned to live with them and through him. I feel for your family that it's your son and not an adult, I know it's got to be about a billion times harder to watch your child seize than your husband (no matter how much you love your spouse). Maybe Kyle was feeling "off" and that's why he came into your room. Before the end of my husband's seizures he got to where he "knew" the "feeling" of a seizure coming on and he'd lay down (wherever he was at the time) so that he wouldn't injure himself more and that we could be there in case it got really bad. Seizures are scary for the one having them and for the ones who have to stand by and watch. God bless all of you!!

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  20. Never a dull moment with the little king. I LOVE reading your post on Facebook.

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  21. Is it just me or does the Amazon link not work? I tried clicking on it to buy something but nothing happened. I've been hovering over it but it's not working for me. Maybe it's just my computer. In case it isn't, just thought I'd mention it. Happy Mother's Day to your wife!

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  22. You guys are doing great taking care of each other. Thank you for taking the time to share a bit of your life.

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  23. The Sensory Spectrum is hosting a special blog hop of posts from bloggers in June and we'd love to have you participate! Just imagine a list of bloggers sharing their stories about what it’s like to have sensory kiddos! Read more here: http://www.thesensoryspectrum.com/sensory-bloggers-blog-hop-information/

    Joining in on this blog hop will undoubtedly get your blog more exposure as people will hop from one blog to the next to read the stories. I will also be tweeting everyone's stories during the month and highlighting some on my Facebook page.

    I hope you'll join us!
    Jennifer @ The Sensory Spectrum
    (and you can find me @ The Jenny Evolution, too!)

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