I got to see a whole new side of autism this week. One I’d never really witnessed to this extreme and I’ve got to admit that it kinda unnerved me. Lucas has been so sick this past few days that he completely shut down and became non-verbal.
I have always known that in times of stress or illness that Harley almost always chooses the fight response and that Ella takes flight but until now – I hadn’t quite figured out which way Lucas would go in times of crisis.
But now I know. He shuts down and takes flight and it’s pretty damn scary let me tell you.
For those that haven’t already heard – Lucas’ fevers ended up landing him in hospital to undergo a series of tests, and at one point the Doctors were concerned that he might have Guillain–Barré syndrome as he was unable to stand or walk or bear any weight at all on his legs. He was also unable to urinate and the Paediatrician couldn’t get a reflex response from his knees or his ankles. But this was only ever a temporary diagnosis awaiting test results for confirmation and we prayed HARD that it wouldn’t stick.
This all happened on Lucas’ 5th birthday on Thursday which is actually how we knew that he wasn’t faking anything. What child wouldn’t want to walk up to their parent’s bedroom to open their gifts? What child would lay disinterested on the floor not absorbing the excitement that was all around him?
The paediatrician originally told us that Lucas would have to undergo a lumbar puncture and I was feeling sick about it. Thankfully though, it didn’t come to that because they were able to prove through the results of all the various other tests that he has “Influenza Myositis” which basically means that his muscles are inflamed as a result of the particular strain of flu that he contracted. This is why his feet and legs couldn’t hold him and this is why he was so weak and lethargic.
The entire time that Lucas was undergoing tests and being monitored – he lay in the hospital bed completely glassy-eyed and non-responsive. He would look straight through me and stare into space. It was a real case of the lights being on but nobody being home! He is usually such a lively and active little boy – this was NOT him at all.
After each blood test (during which it took 5 adults to hold him down) he would scream for 10-15 minutes and then slump into a long, deep sleep where he didn’t register anything at all. I would tickle his feet and legs and he wouldn’t respond. This was frightening because Guillain-Barré usually starts at the feet and the paralysis works its way up until the entire body is affected in what sometimes becomes permanent paralysis. So for him to not even flinch was not good at all.
There was so much going on in and around him that he was simply unable to process it all so he shut down so that he didn’t have to process any of it.
Otherwise known as: Survival mode.
He spent hours laying in my arms dozing in and out of sleep and didn’t seem to register anything that I said to him. He would occasionally look intently at me without smiling, gaze around the room and then drift back off again.
I had no choice but to trust God and pray that he would be healed!
And thank GOD that things did start to improve and he was sent home late yesterday afternoon to continue slowly recovering in his own bed.
He certainly gave us all a fright!
Since he has been back home – he is smiling again, registering faces and even talking a bit.
He’s still not well but is a completely different child. It’s amazing how different he is when he is surrounded by that which is familiar to him.
There were people praying for him all over the world thanks to the wonderful friends that I have and we had so many offers of meals, help and support that it was simply overwhelming. I am overflowing with gratitude to each and every person that contacted us in some way during this unpredictable and confusing time.
God is good and he heard our prayers. We are thrilled that Lucas’ final diagnosis is not as serious as first mentioned by the Doctors and are so thankful to have our little boy back again. I am so pleased that God orchestrated it in such a way that my Mum has been here the entire time to help the family to run smoothly too. Harley is very close to my Mum and he needed the assurance of someone who “gets” him nearby during all of this turmoil.
Harley has been unwell himself and as the days pass by – we have noticed him limping on his legs and complaining of body aches and pains too.
*sigh* JUST what we need – another sick child!
At least now we know that we can manage it and that he probably has a similar thing to what Lucas has endured.
Since yesterday, Harley’s words have become less frequent and they are gradually being replaced by moans, groans, grunts, screams and crying. It is clear that his condition is worsening and his little body is handling it in the way the HE responds. Not by taking flight but by fighting and taking fright.
I’ve been kicked, punched, slapped and growled at this afternoon and he has punched his brother’s helium birthday balloon in frustration and anger until his face turned red with exhaustion. He is stomping around the house like a bear with a sore head and kicking everything in his path.
Poor little Lucas has been in the firing line most of the afternoon and has taken shelter in Grandma’s arms on a number of occasions. Everybody suffers when Harley is unwell or unhappy. Yep everybody.
If only Harley wasn’t a fighter.
Taking flight is by no means good but at least it’s more socially acceptable and no-one gets hurt.
I know that this is the way that Harley is made and that even he can’t always control it , but oh-my-goodness…..this violence and aggression really bites.
Please get well soon Harley. We want our beautiful, affectionate charming little man back.