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Living with Autism


August 12, 2015

A Glimpse into Caring for an Severely-Autistic Adult

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                 One Night and Day in the Life of Caring for a Severely-Autistic Young Adult

3:33 a.m. Receive call from LVN on duty that 2:1 support required during tonic-clonic seizure. (LVN protects my son from falling off bed, while I set up oxygen, she applies it and then I rush to grab rescue meds from refrigerator in other room). 

4:25 a.m. Receive call from LVN for another assist. I find my autistic adult son bouncing on bed, laughing loudly. LVN informs me he has voided (soaked his diaper and sheets). As a result, it will take two people to safely transfer Jamey to a chair, change bedding, apply new diaper and re-direct him back to bed. 

5:29 a.m. Can't fall back to sleep. I peruse latest research on self-injurious behavior, autism, epilepsy. Recent study shows dysfunction in amino acid metabolism may be linked to recurrent seizures in autism. Fab. Apparently, certain autistic people hyper-metabolize specific amino acids, thus needing daily supplementation. Sounds like an easy fix. Not. Which amino acid? To get the answer, you'll have to be in a research study in a city you've never heard of, or find a genetic doctor that will order specific tests that take months to be sent back and hope someone bothers to call you with the results so you can actually fix something that has plagued your child for years, if indeed this is the case. Super. Another battle. Something else to ruminate on. Another 12 hours on the phone. I won't be needing coffee now. Cortisol skyrockets...again. 

6:50 a.m. Read Verse of the Day: "God can do anything, you know--far more than you could ever imagine or guess or request in your wildest dreams! He does it not by pushing us around but by working within us..." Ephesians 3:20-21.  Good to know, because bible also says Hope deferred makes heart sick. My heart is ready for a defibrillator at this point (20 + years of hoping). Dear God, You've heard this prayer. Here I go again. Will You please heal Jamey's seizures? His self-injurious behavior? Show me insight into why and specifically what we can do to improve his life and really, really help him.  He requires so much, God and some people resent this, even though it's by no fault of his own. You made him. You know him better than anyone. Provide for him. Thank You for what You have done. Please continue to BLESS and ANOINT ALL those who advocate for Jamey. Surround Jamey with warrior angels who will guard and protect him. Protect other people with autism God. Truly, the most vulnerable among us. Yet possess such great potential. Thank You for hearing my prayer. Amen. In my heartache and frustration, I feel so far from God. I'm not even sure I believe anymore. 

7:35 a.m. New LVN AM shift. My son picked up by transportation to attend Autism Day Program for Adults. I assist getting my son into car (he's exhibiting mild SIB and drop seizure activity. Because the LVN only has two arms, one is carrying huge back pack with Jamey's supplies), safe transfer to transport requires two people walking Jamey, one on each side. When the LVN gets to Autism Day Program, there will be other staff to provide 2-3 person support. LVN applies helmet for safety during ride to program. 

8:30 a.m. Start laundry (bleach sheets from last night's void). Fold clothes that were previously voided on and had to be washed and rinsed twice. 

9:30 a.m  Phone pharmacy. Ask why new prescription doesn't reflect most current prescription on file. Discover old prescription was filled because it wasn't discontinued and the new script wasn't scanned into computer. Not mad. Frustrated, yes. Pharmacy always polite and helpful and are dealing with a brand new computer system. 

10:35 a.m. Phone Neurology to check updated script. Provide latest updates on seizure activity. 

11:00 a.m. Phone in refills for mail-order pharmacy meds. Phone in re-fills for medications that must be picked up at the pharmacy. 

12:00 p.m. Another load of laundry. Washing gait belt in delicate cycle. Fold more clothes. 

1:20 p.m. Answer phone. Speak to Neurologist's nurse re: medications

1:45 p.m.  Check dry-erase board to see when I need to re-order diapers and oxygen. 

2:00 p.m. Wash Jamey's "therapy" dogs. Dogs adore Jamey! He often pets them during behavioral therapy. One dog has learned to jump on his arm when he attempts SIB. A possible therapeutic dog for SIB? 

3:00 p.m. Dogs run in circles. Do Judo-like moves on each other. Stop, drop, roll around in pockets of decomposed granite. Thanks ladies. Thanks for staying clean. 

3:30 p.m.  Chase and attempt to terminate Tarantula Hawk hunting around patio, because if this dastardly, debased creature comes near my autistic son and 1:1 nurse, I will rip it's wicked wings, vile head and sadistic stinger off with bare hands, if necessary.

3:40 p.m. Jamey and LVN arrive back from Autism Day Program. I get patio cushion ready, line it with chux---so I don't have to throw out and purchase another patio cushion--prepare and set up Jamey's snack and drink for ABA therapy.

3:50  Help LVN walk Jamey around pool. 

4:15  Two person assist again during SIB. Help LVN undress, apply life jacket and transfer Jamey into hot tub safely (really a cool tub today, since it's summer), during self-abusive meltdown not responding to re-direction, etc...

4:30 p.m. ABA therapist arrives to assist LVN, thank God...cuz Tarantula Hawk perched on high bush, as if taunting us. She (she-- because 'she' has a visible stinger) is going down. 

5:00 p.m  Feed chickens. Collect eggs. Avoid snake of unknown genus or species in corner of chicken coop. So done with desert living. 

6:00 p.m. Prepare Jamey's dinner. Microwave sweet potato. BPA free bowl ready. Add Wild Salmon, crushed cilantro, cream cheese and Greek Yogurt. LVN prepares medications and ABA sits with Jamey on patio. 

6:05 p.m. Run outside to check if vile insect still present. Nope. 

6:06 p.m Run back inside. Bring out food for LVN to feed Jamey's medications and ABA therapist to work on independent feeding program. 

6:18 p.m Jamey drinks all his fluids. LVN requests I fill up water bottle, so he and the ABA therapist can continue working with Jamey. 

6:34 p.m. ABA therapist and LVN 2 person assist during SIB to bathroom for bath. I jump in, prepare bath, check water, while LVN and ABA attempt to undress Jamey safely to get into bath. Mission accomplished with 2 person support (actually 3 person if you count me preparing bath). 

7:00 p.m. Incoming LVN arrives. 

7:30 p.m ABA therapist leaves. AM LVN gone. I am once again the  2:1 back up support to the 1:1 LVN, from 7:30 p.m--7:00 a.m, for my autistic son. 

8:00 p.m I show LVN on duty where new aromatherapy massage oil is. LVN reminds me we have no nursing coverage for a few days in July and several days in August. Wonderful, now that's a news reminder that helps me sleep. 

9:15 p.m- unknown: I am having a silent nervous breakdown. OK, not so silent, as I'm episodically going outside, under the cover of darkness, punching empty card board boxes in my driveway and repeatedly yelling the F-word.

Midnight:  Prepare for another repeat of having no nurses secured: I re-read the Regional Center Nursing Vendor List on-line. Same names of same nurses that couldn't physically handle Jamey's needs two years ago, on same list. Super duper. Same nursing agencies that sent out unlicensed CNA and LVNs who were not a safe match to handle my son's medical needs. 

5:30 a.m. Receive call from LVN. Another seizure. Drop seizures. I remind myself to confirm sleep study appointment to check for sleep apnea. I will later tell you in another Blog entry how I assisted LVN at sleep study and we went through hell to get on all the electrodes and then were soon told they couldn't deal with people like my son, since he voided while we were there and had to be changed. I recall temporarily turning into a startled Lioness, roaring the reality that if they didn't 'reasonably accommodate' my autistic son, they could 'kiss their phony America's Best Sleep Disorder Award good-bye' and would be hearing from a civil right's attorney because I'm so sick of 'casual and thoughtless discrimination against people with special needs". The good news is a branch manager later arrived. I explained how autistic adults are vulnerable and often are denied medical testing that others have access to due to their disability. He agreed that didn't seem fair and said they would continue to perform the sleep study. Hopefully, this man can take this information and this will help another parent who is in our situation in the future. Sleep study completed. 

Never give up. Never, ever give up. You are your autistic child's voice. At any age. At all times. 

Kim Oakley, mother of a handsome, green-eyed, resilient, awesome, incredible young autistic adult named Jamey. 



W Ford said...

Hi Ms Oakley I have a few questions and comments. 1. Did they find the cause of your son epilepsy or the syndrome. My half aunt died of a seizure in her 20's in the 1990's she supposed refused medicine so I know how dangerous they are. 2. What is up with the regional center man. I am a client also and the vendor staff lacks education and training like Social vocational services of long beach. I believe with the fact a "job coach" in a day program I was in listening to vulgar music and (wild up other clients from it) in a company van (svs) shows the low level of regional center vendors. 3 I am glad to be high functioning as my mom could not handle me the same way you do your son I also have Neurofibromatosis as serious medical condition and some of us have autism as well like me

ceceliamichaeloneill said...

A wonderfully written piece, you are a very talented writer. My son also has epilepsy, I'm getting him the new VNS the AspireSR which automatically senses a seizure and I wonder if this would benefit your handsome son. All the best to you and your family, your struggles are not in vain, Jamie knows he is very loved by his Mom, take care.

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