Wednesday, June 12, 2019

Back to the Blog I go..

At one time I was a faithful blogger.  I think that was more to prove to myself that my family was good and we were fine, despite our challenges.
It seems it's time to start blogging again for the same reason.  Because my life seems hard right now, and I need to prove to myself that my family is good and we are fine, despite our challenges.

Not the kind that people talk about.  Not the kind where the child knows everything about a subject.  Not the kind where the child needs social stories to be able to handle new situations or changes in routine.  Not that autism.
No, I'm talking about the non-verbal, poop smearing, constantly stimming, has no idea there are other people in the room (expect occasionally to meet his needs), eats drywall, your doctor talks to you about residential living arrangements kind of autism.

In my mind, there are three autisms - high functioning, then what people think about when they hear autism, and the severe kind ... the kind Alex has.

We have the sticker on our car.  We go to the occasional autism activities - for the other SN kids in my family, but Alex is always left at home.  And he doesn't care.  He doesn't notice.  He couldn't care less.  It's not like he's dissing the group.  It just honestly doesn't even come near his world or enter his mind that there is more out there.  His world is spinning and swinging and banging and putting everything in his mouth.  His world is his cookies and his chew clothes.

And then there's EPILEPSY.

Which has been killing us over here lately.  The other day my 16 year old was bagging my son!  (translation: she was using an ambu bag to force air into his body while he laid on our kitchen counter.  His 20 year old sister was timing the seizure.  His 18 year old sister holding him on his side because he was salivating so much there was danger of his saliva going into his lungs.  Where was Mom?  On the phone with 911.)  My big kids can go from self absorbed, doing their thing to totally focused on a small seizing brother instantly.  They were trained in the school of life how to care for him.  My 12 year old asks if we are going to have to call the fireman whenever Alex gets sick.  (because the fireman are just around the corner and respond to our 911 calls very quickly.)

Alex used to have long scary seizures, but very infrequently.  Now he has multiple seizures a day.  They are short, but they leave him having to sleep them off for several hours.

Which brings us to our newest normal:
Periods of autism, followed by postictal Alex, followed by autism.

I am tired, so tired.

There is another side to Alex that if I'm being 100% honest, I have to record.
Alex is a funny and loving child.  He delights in his toys - anything that makes noise.  His laugh and smile can light up the room!  And after he's had a seizure, as well as other times (I think he needs the deep pressure input), Alex cuddles.  And it's the sweetest thing.  And he loves it when you repeat his sounds!  He has learned a song, "Are You Sleeping?" and he LOVES it when you repeat it after him.  Fortunately, it's a repeat kind of song:
Are you sleeping?          Are you sleeping?
Brother John?                 Brother John?
Only he doesn't use words, but he makes his noises and we know it's that song.
And he can be taught.  If I say, "Brother, pray time!"  He puts those little hands together so fast - and it's precious beyond words!

We love our Alex.  He is our precious, sweet boy.  But I am tired and a little scared of what the future holds for him.  I do not like these seizures - or all of the drugs we are pouring into his body to try and get them to stop.  Hang in there, buddy!  We are trying to figure this out!

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