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By Brenda Kosky-Deskin

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Ready For September

September 4, 2013   Comments (6)

General Interest

autism-hospitalIn mid-August I began feeling blue. While this is not unusual for me at this time of year – or for many other people for that matter who are also saddened by having to say goodbye to the summer – this time my sorrow was more profound. The source of my melancholy however, was no mystery. While other parents were busy digging through their basements for old dishes and linens and fighting lines at Ikea in order to equip their high school grads for their first day of university, my 18-year-old was still watching Barney videos and barely able to write his own name. Michael has Autism and I can say with great certainty that due to the severity of his condition, university is not in his future.

But here we are in the second week of September and I find myself preoccupied not with thoughts about Michael never going to university, but rather with an incredible sense of relief and gratitude that our son is alive and able to enjoy the crisp autumn breeze that flows through our house today.

Michael began losing his appetite and showing signs of fatigue in early August. He is not unable to communicate pain or discomfort, but we figured he was simply getting a cold as these are his typical early signs of illness. An unrelenting high fever and refusal to eat or drink anything by later in the week increased our concern and prompted us to pay a visit the emergency room with him on August 19th – not how my husband and I imagined we'd be spending the evening of our 20th wedding anniversary. But, as parents, we do what we must, and we headed to the ER with Michael, figuring that we'd be home later that night or early the next day after they got some antibiotics and fluids into him.

I don't know who was more terrified that night, Michael or me. His breathing worsened with the passing of every hour. The emergency physician was immediately concerned about his rapid heartbeat and low blood pressure. The entire night seemed to spiral out of control and within twelve hours of arriving at emerg, Michael was transferred directly to the hospital's Intensive Care Unit, where he remained heavily sedated and dependent on a respirator to breathe for the next eight days. Daily chest X-rays monitored what ended up being an extraordinarily severe case of pneumonia. The entire experience seemed surreal to me. One day ran into the next as we sat over Michael's hospital bed, doing our best to digest the doctors' ongoing updates and trying not to panic upon hearing the various beeps and alarms that would alert his nurses of a decline in his blood pressure or an increase in his heart rate. Would he respond to the latest antibiotic? When would his fever finally break? When would his daily x-rays start showing signs of improvement rather than the downward trend that they continued to reveal day after day? It was absolutely terrifying, not to mention emotionally and physically exhausting.

At long last, Michael finally turned a corner. His fever broke. The intense rigors, or vigorous seizure-like tremors that he had experienced for a week, finally disappeared. The x-rays finally showed slow but definitive signs of improvement. He was extubated. He opened his eyes. Slowly but surely, we were getting our Michael back. At long last, he was ready to leave the ICU and be transferred to the general medicine ward for a few days of observation before his ultimate return home, eleven agonizing days after we brought him into the emergency department for what we thought would be a quick visit.

Now with some rest and peace of mind under my belt, thereby enabling me to think more clearly than I have been able to in weeks, I reflect back on the event often. I share my thoughts here in the hope that they might help shape other Autism Parents' future decisions about what and how they may want to consider teaching their autistic children. 

This experience has taught me just how invaluable Michael's past fifteen years of ABA therapy have truly been. Michael's ability to follow an activity schedule, his high levels of compliance, and numerous other skills and concepts on which Michael, his family and therapists have worked so diligently, all played a vital role in his treatment and recovery. Michael's emergency room visit and hospital stay have also helped me identify some holes in his ABA curriculum that we need to better address. One, for example, is creating a desensitization program on wearing bandages. I think that the those wraps holding Michael's IVs in place were more upsetting to have on his arm than the IVs themselves. Although we have been unsuccessful in teaching pill-swallowing in the past, I think it's time for this skill to be readdressed. It is not uncommon for Michael to grasp new skills on subsequent teaching attempts that he was not able to master on previous ones. I'll have to make sure I practice what I preach and review a guest blog I myself wrote – ironically only two weeks before Michael's ordeal began – entitled 10 Ways to Help Prepare Your Special Needs Child For A Hospital Emergency Visit.

Michael's hospital stay has also reminded me about how important it is to advocate and to educate people – even medical professionals – about Autism in general, and specifically about how it affects your child. We were extremely fortunate in that every doctor, nurse and medical technician whom we encountered was more than happy to listen and learn about Michael, and then think outside of the box in terms of how to best approach Michael's treatment, always being mindful about his Autism and making accommodations for his special needs. We will be forever grateful to the Intensivist Physician team leaders, Drs. Deborah Cook and Jill Rudkowski, and their Residents for their compassion, expertise and dedication.

I have always appreciated Michael's ABA therapist for their ongoing dedication to my son but as of late, I am truly in awe of our team. They came to our rescue when we needed them most, providing ABA therapy in-hospital to Michael, thereby enabling him to manage keeping his IV lines in place, tolerating awkward chest x-rays and other important aspects of his hospital stay that were integral to his treatment and recovery. To all of you, thank-you from the bottom of our hearts.

Friends and family, you too were amazing. Your words of support on Facebook, willingness to shuffling us back and forth from the hospital when we were simply too tired to drive, or providing us with a comforting, warm meal, are all so greatly appreciated. You were there when we needed you and we feel so fortunate to have had this help and support.

To my many loyal visitors, thanks for your patience and understanding as to why my site has not been updated nearly as much as is usually the case. I hope that the site's brand new design – something that has been a work in progress for the past two months – will in part, make up for our recent online silence. We're now back up and running, full steam ahead! Updates from the month of August have now been back-posted and we are back on track with our regular and timely Autism updates that will hopefully enable all of us to continue growing as Autism parents, professionals and advocates, and to triumph over any obstacles that may stand in our way.


September 4, 2013   Comments (6)

General Interest

Fran said on September 11, 2013

That was a truly scary 10 days!  You are remarkable and never cease to amaze us

Bridget said on September 12, 2013

Reading your blog about your son, his unexpected illness & hospital stay was like reading our own family story.  It mirrors our story in amost EVERY way!  My sister & husband also spent their 13th wedding anniversary at Children’s hospital with their non verbal Autistic child who had developed severe pneumonia & had to have a chest tube inserted.  My sister kept going back wondering how the pediatrician missed it & how it developed so rapidly into such a serious problem.  The staff at our local Children’s Hospital were not very well versed in Autism & as I sat with her one day, the doctor decided to release her, when he left, I said “No, something isn’t right with her breathing, you need him to take another look!”  She was chest tubed that evening when the doctor realized something was wrong.  I wish I could share the photos I snapped of her.  I’m glad to hear your son is doing better & I will definitely share your blog my sister.  After my niece was discharged, we said that we needed to do something to better educate hospital staff on Autism.  Kristina also hated her bandages with IV & yanked them out & nursing staff seemed baffled about Autism, asking why my niece was rocking.  I’m so glad I found your blog.  Your honesty & candor is truly inspiring!

Ryan Judd said on September 12, 2013

Wow, that sounds like a nightmare.  I am so glad that Michael made it through.  Thank you for sharing your experience.

Rose ( mom of 4 glorious boys) said on September 13, 2013

Thank you for sharing and being real even in the midst of such difficulty.  It is a tremendous gift for me.  I’m glad you’ve all turned that corner.  We all seem to, don’t we?  We don’t have a choice, we’ve gotta do what we’ve gotta do.  Sometimes though, it’s like the wind gets knocked out of our sails.  I’m glad you have great support around you.  We’re still looking but glad we found you.

Bojan - Alpha Efficiency said on September 13, 2013

Really appreciate the new design, looks very professional.
Best regards from Chicago

Christine Munro said on September 21, 2013

This was a truly heart warming story. What an amazing family you are. Just so lost for words. Very inspiring.

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