Utter Autism

February 13, 2010

The New Normal

Slowly but surely we’re getting back to a new normal around here. 

Adrian is doing awesome with the PIC line in his arm.  It doesn’t seem to bother him a bit.  He doesn’t even look up from what he’s doing when I hook him up for the meds anymore.  I’ve gotten quite good at going through the procedure quickly and efficiently and I’m shifting the schedule for the meds to be a little less obtrusive in our day.

He is bothered by the cast but we’re getting around it.  I’m more comfortable leaving him alone for short bits of time having watched how cautious he is even when he does try to put pressure on the foot.  Ideally he wouldn’t do that at all, but all we can do is the best we can around here. 

Last night I actually left him alone upstairs in the bed asleep and got my first chance to relax at my desk in a week.  He’s still sleeping in our room for now but I can see that possibly changing if get his med schedule off nights and we can find ways to block him in his own bed.

He’s gotten quite good at zooming around the first floor in his wheelchair, even moving himself on and off the couch and going to the bathroom independently.   We set up a computer for him where he can just roll up to use it and with his chair moved out of the kitchen, eating is also a drive thru experience.

I’m still rather amazed things have gone as well as they have under the circumstances.  I’m still a bit tired and occasionally I think I may go out of my mind being attached to him 24/7 but then my wonderful husband steps in or the other kids offer to help.   Stealing a few hours to myself at night while he sleeps will go a long way towards making me feel like I have some freedom from being a mom and nurse too.

Yeah, the new normal isn’t so bad.  Only 5 weeks more of antibiotics to go 🙂

February 9, 2010

Hospital Adventure: Hospital at Home

If you’d told me a week ago that we’d survive 5 days and 4 nights in the hospital with Adrian, I would have thought you were crazy.  But not only did we survive it, things actually went fairly well under the circumstances.

Yesterday they applied a hard cast to his foot,  verified that the antibiotic he’s on is the right one for the job and set us up with some home nursing care once a week.  With all that out of the way, we were finally discharged last night. 

I had just enough time to get in the door, clean up, take a shower and prepare for the nurse to come.  Still short on sleep and stressed about working out all the issues with having him home, I anxiously awaited the arrival of the nurse who was coming to make sure I knew how to give him his antibiotics through the PIC IV line.

I can’t begin to say how relieved I was to find that the nurse they’d sent was an aquaintence from church.  I said, “It’s you!” , took a deep breath, fell against the wall and relaxed for the first time in what seemed like days.  The visit went well, she was great and by the time she left I felt that I could take the medication stuff off my list of things to worry about.

We’re pretty much doing the ‘hospital at home’ thing right now.  Someone is always with him, we’re keeping him moving and entertained as best we can.  We brought his wheelchair in the house and with some furniture moved out of the way he can access the kitchen, family room, bathroom and my husband’s office by scooting the wheelchair along with his good foot.

We’ve tried the crutches a few times with little success.  It takes quite a bit of coordination and he’s just not got it yet.  We’ll probably keep at it if only for something else to do to keep from going stir crazy.

We set up a bed for Adrian in our room so we could keep an eye on him.   It made it a bit easier to do his meds at 4 am too.  I’m still working on a way to get him back in his own bed.  I may try some particle board ‘walls’ around his bed to prevent him from getting up without us.

I’m hoping that we can work out ways to make things easier over the next couple of days… but even if we don’t I think we can probably survive a couple of months this way.   After all, we survived 5 days in the hospital!  Makes me think we can handle just about anything 🙂

February 7, 2010

Hospital Adventure: Laughter Is the Best Medicine

Filed under: Family Life With Autism, Parenting Autistic Children — Carol @ 6:00 am

Asked to name the things I love about Adrian, his laugh would land near the top of that list.  It seems a few days stay in a hospital bed hasn’t put a damper on his sense of humor at all.

The night before last Adrian and I had spent the better part of the night awake, watching one another not sleep.  The nurse came in around 4 am and remarked that he was up bright and early.  I sarcastically responded, “Yeah, great” and as if on cue,  Adrian let out a great belly laugh. 

This, of course, made the nurse laugh and Adrian immediately took note.  He forced another loud laugh and watched expectantly for her reaction.  She didn’t disappoint and the whole affair left us all in giggles.

This morning Adrian woke up laughing.  I watched him as he slept. One moment he was snoring and the next he was chuckling to himself, even before he’d opened his eyes.   As is often the case, we’ll likely never know the entertaining dream or thought that so amused him.   But I’m not so sure I really want to know.  The chuckles continued as he  opened his eyes,  glanced over at me …and laughed all the more heartily.  LOL

Hospital Adventure: Routine

Filed under: Forgot to pick a category — Carol @ 5:04 am

With the major procedures done, today was all about adjusting to the new routines.  Regular checks of his blood pressure and temperature, administration of the antibiotics and pain medications, checks by nurses and doctors, scheduled meals and the complicated logistics of restroom use. 

He passed the time between napping, watching TV and movies, listening to music, playing with some figures I brought from home, taking very slow wheelchair rides around the small unit.  

He seemed relaxed, generally comfortable and in good spirits.  There were no outbursts and no incidents of aggression.  Under the circumstances I don’t think I could really ask for more.

February 6, 2010

Hospital Adventure: Settling in

Filed under: Family Life With Autism, Parenting Autistic Children — Carol @ 9:00 pm

This is our second night here.  Today was a busy day with an MRI then surgery, two IV’s put in and another taken out and visits from more doctors and nurses than we can count.

I think Adrian and I are both feeling much more calm and settled than last night.  He seems to have resigned himself to the fact that we’re here and won’t be going home.  When he points to the door and I tell him that no, we need to stay and we’ll sleep here he simply lowers his hand and goes back to watching TV.  A huge difference from the angry outburst which was his response yesterday.

Hospital Adventure: the ER

If I was looking for a reason to come back to writing here, I think I’ve found it. 

Adrian began pointing to his ankle one night about a week ago.  It looked slightly swollen but there was no bruising or redness or any other indication of injury so we put him to bed and the following morning it was back to normal.  A night or two later, same thing. 

A call to the doctor, an x-ray and some blood work won us a ticket straight to the hospital to treat a bone infection. 

Knowing the process of being admitted to the hospital would be difficult, I packed a bag full of activities, snacks and tools.  I had his music player, DVD player, communication device, a laptop, a Nintendo DS, a video camera and a white board to write on.  We used his wheelchair to bring him both to help him deal with the sensory overload of the environment and also so we’d have a measure of control with him securely fastened in the chair.

Short on rooms, we ended up sitting in the hallway on a bed.  The noise, the activity all around us, the lighting and the confusion were a recipe for disaster.  Adrian didn’t disappoint.  He yelled, screamed, cried and carried on.  He pinched and punched everything in sight – the walls, the bed, himself and us. 

We tried the communication device and the DVD player but neither caught his attention enough to distract him from his tirade.  I pulled out the white board and drew part of a house adding the letters ‘hou’ next to it.  He bit stopped to  finished drawing the house and writing the word. 

Next, I wrote down the letter ‘M’ and handed him the board.   He wrote the word ‘mouse’.  I wrote several other letters and for each he thought a moment and then wrote out the rest of a word that began with that letter.  He wrote his last name, cookie, home, and shocked me by writing my first name.  I didn’t even know he knew that!

He found the activity calming but it couldn’t last forever.  The wait went on and eventually he’d had enough and he went back to his tantrum, this time running down the crowded hall.  We moved to using the technique of folding his hands and slowly counting to 10 which was met with only minimal success as evidenced by the black and blues that still populate my arms.

Once we got into a room he settled down to watch some TV.   We turned the lights down, fed him a few cookies and had a chance to catch our breath for a moment. 

As the moments ticked on he became more agitated.  It was getting late and I’m sure he wanted nothing more than to just go home to his comfy bed.  I told him that we were going to stay and sleep in this strange place.   I think he clearly understood what I was saying because each time he responded with anger and increased aggression.

He sat still and calm and let us put an IV in.    But my husband and I ended up sitting on either side, each holding a hand to prevent him from pulling it out.  In the end our efforts were futile.  We were distracted talking to one of the doctors for a few seconds and that’s all it took him to rip it from his arm despite the tape and gauze wrappings they’d applied.

Our business in the ER finished, we were relieved to finally make it to the pediatrics unit… well, all of us except for Adrian.

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