Tag Archive | Autism

Son’s Surgery Stream-of-Consciousness

So I’m back in the University of Michigan Hospital for yet another surgery for my son, Josiah.  This is now his 18th surgery…but thankfully not one of the biggies (Open Heart, Brain Tumor, or Liver Transplant).  During the pre-op preparations he told one of the cute nurses “Surgeries are my hobby!”…& being autistic he wasn’t exactly joking…

This is the first time he is having the surgery In the New Mott Children’s portion of the hospital.  The last 2 surgeries were in the adult hospital even though the New Mott was available.  His Liver Transplant being done in the University Hospital was more of a challenge since we were told it would be done in Mott & he/we weren’t prepared for the lower key aspect of care on the adult side.  Being autistic, a Developmental Disability, means that my son is in many ways “younger” than his chronological age & he still appreciates at least some aspects of Pediatric medical care.

Today’s surgery involves the Pediatric Urologist, as these are birth related defects that require intervention.  I believe he may always need to see the Pediatric Urologist if he has further issues in this domain as an adult Urologist wouldn’t be familiar with the particular needs & concerns that go along with birth defect concerns…at least that’s the rationale why he will always be seen by Pediatric Cardiology for his Congenital Heart defects & cardiovascular management, so I’m assuming it may be similar with Uro.

Today I’m really tired from a lack of sleep for the last few days…& possibly additionally fatigued by some degree of emotional strain, just because surgery is still scary & dangerous even if it’s not being done on a vital organ, per se…I doubt that there will be much good sleep in his hospital room tonight either, but maybe he’ll be lower key in the post-op phase & both of us can get some naps in…

Being at U of M is fairly “routine” for Josiah & I so we may not be so cognizant of how many other people who are here for medical care are facing dire experiences.

The electronic computer screen in the Pediatric Waiting Area on the 2nd floor of New Mott has space for 78 cases…& 77 of these spaces were filled in–Wow!  I wonder if PCTU (Peds Cardio-Thoracic Unit) still has its own separate waiting room like it did back when Josiah experienced his 2 Open Heart Surgeries, if so there could be more than 80+ kids having surgery here today…Honestly that could be the case any way in that the 78 case space may only reflect the current cases.  Josiah’s surgeon had at least 3 surgeries today & certainly many of the other surgeons would have more than one surgical case/day.

Although J & I usually feel comfortable & safe here at U of M there are many others here that may be completely overwhelmed.  I know when I first came here when Josiah was an infant & transferred here from his birth hospital by ambulance the whole experience was surreal & intense.  I hope most of these kids & families are just briefly passing through & not looking at lifelong care in multiple arenas of intensity like with Josiah.

I went to Guest Assistance to get a new Parking Pass, & am glad that they have finally reverted to issuing them for 3 months, not just one.  It’s a blessing that they provide this service for people of limited means.  I’m also thankful for the possibility of getting some reimbursement from Josiah’s Insurance for meal costs.  It somewhat takes me back to those more intense days where I’d get those vouchers from Social Work & then go down to the Hospital Cashier on weekdays to get those funds…I’m also thankful for U of M’s financial assistance program that allowed me to personally get some medical without having further out of pocket costs beyond what our insurance provided!  If not for that assistance I likely wouldn’t have taken care of certain medical needs, at least not as quickly because the out-of-pocket costs would have been prohibitive…

I’m so thankful for the amazing quality of care Josiah has received at U of M for these 2+ decades!  This place & the people who work here are blessings!!!

This is the first surgery that had me issued with a pager that could display text messages.  Though that is quite convenient to get written updates it also reflects the diminishing of personal contact & care that a face to face with an OR nurse or student doctor could provide.  There are pros & cons with either approach…hmm.

This is the first surgery we’ve experienced with a group of people praying for us who are also checking in & communicating online to the degree the other blogs have been (CTH & Stella’s).  It’s bittersweet in that these are people we don’t personally know but they seem, in some respects, more interested & invested in what’s happening with Josiah than some of the family, friends, & church family we have…I wonder if I was “on Facebook” if there would be more of those type of interactions–but I doubt I’ll ever join & find out.

Tonight being the night for Skyline Café, the free food & music event that happens on Thursday evenings, I hope that I’ll be able to get a “real” meal there, since it’s only got a one hour window & it might just overlap when Josiah is getting out from under anesthesia.  I meant to pack up some type of lunch for our trip today, but my sleeplessness lead to even more forgetfulness than usual so I forgot!  At least there are some snacks in my collection of hospital trip crap to help tide me/him over.  I really hope the staff remember to give Josiah dextrose to help with blood sugar…

Gotta page to talk with the doctor so gotta run!…

Feelings

This a beautiful post that seems to encapsulate some aspects of the autism experience from within. I’m so thankful that some people will choose to open up & share their unique insights from their personal perspective. I hope to get my autistic son to read the original post some time & see if he actually relates to this description of emotional/sensory overload.

Image result for feelings scripture

from a Bing.com image search for “feelings scripture”

Here’s what I shared with the author:

valeriecurren
Beautifully & eloquently stated. This helps me understand my autistic son just a little bit better. Thank you for sharing this!

Image result for feelings scripture

from a Bing.com image search for “feelings scripture”

Image result for feelings scripture

from a Bing.com image search for “feelings scripture”

Please read the original post, I will revisit it too, which is why it’s posted to my blog, for it is precious & in her own words!  Blessings, Valerie

autismthoughts

I think I feel too much. That is what autism is most like for me. Autism is feeling everything acutely all the time. I literally feel everything. I feel every object in a room. I feel sounds and smells and tastes. I feel words. I feel emotions. I can’t say I feel differently than you because I don’t know exactly how you feel. I have never been you. But I can say that I feel everything physically. And it is exhausting…

I was telling a friend today that I think I love too much. Love for me is overwhelming. It makes my whole body tingle. Love is a burst of energy that penetrates every fiber of my being. It feels like it literally changes my DNA so that I am now connected to a person in a way that they are made a part of me. I love hugs because it…

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OK, I admit it…I wanted this on my blog so I could find it again…and to share it with my son, Josiah, who is just starting out with his own blogging voice–as someone who’s on the Autism Spectrum & a Passionate Outspoken Christian.  Check him out here:

JosiahsFreakShow.wordpress.com

 

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This is Josiah from a few years back…a fitting picture for his blog title, hmm?

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Josiah with Clarissa, Nathaniel, & his twin Brandon–what a bunch of hams!

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Josiah running Track for his High School, about 5 years ago…

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Josiah peeking out of his then bedroom window (he’s got half our basement now) during an air-soft battle with sibs & Dad a few years back…

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Josiah Skywalker battles his “lookalike”…kind of like Luke in that cave…