AVONTES LAW

The link for Avonte’s Law article:

Avonte’s Law

I just wrote about wandering and elopement:

Autism: Elopement and Wandering 

This law needs to be passed with affordable option available to help families with childern and adults who have autism, developmental disabilities, and other diagnosises that may be at a higher rate of elopement.

The  U.S Senate passed Avonte’s Law … it still needs to be approved by the House of Representatives and signed by President Obama.

Keeping fingers crossed!!!!

AVONTES LAW

The link for Avonte’s Law article:

Avonte’s Law

I just wrote about wandering and elopement:

Autism: Elopement and Wandering 
This law needs to be passed with affordable option available to help families with childern and adults who have autism, developmental disabilities, and other diagnosises that may be at a higher rate of elopement.

The  U.S Senate passed Avonte’s Law … it still needs to be approved by the House of Representatives and signed by President Obama.

Keeping fingers crossed!!!!

Elopement and Wandering 

Elopement and wandering … running away, bolting, whatever you want to call it can at best be a worrisome and stressful event, at worst a parent’s nightmare come true. 

K had elopement issues at an early age. She would refuse to hold hands outside and try to run away to some place unknown to us adults. Inside she would open windows, doors, the sliding door and run out. In the apartment, we used the hotel sliding lock on the front door, special window locks, and another lock on the sliding door. She was catchable during those moments when she was 2 to 5 years old. Even she was fast!

The biggest scare, I had was back in 2011. K and I had moved back to our home state. K was 6 at the time, we had spent the night at a friend’s house like we have done many times before. In the middle of the night, K got up and got out the house. She undid all the locks on the door and got out! We all woke up shortly after and noticd K was gone from the condo!

Molly, Josh and I ran outside to start looking for her. Behind Molly’s condo is a steep hill going into the woods with a stream somewhere at the bottom. Around the condo there was a broken basement window. We started to yell out K’s name but go no respone.

Understand, that at 6 years old, K could only say a few words, not answer questions, would not say her name, repeat certian scripted lines from songs in her sing songy voice. She had no sense of danger and no understanding of what to do in a situation like this.

My heart about stopped and I was on the verge of calling the cops and freaking out…

Then I heard sirens! My heart fell into my stomach and I, on instinct, ran towards the sound. Probaly about 1/4 mile down the road, I saw K sitting on the hood of some lady’s car!!! 

Thank the heavens above and the angels watching over K that day! Some kind lady saw her walking down the road and stopped. This lady, who I never found out her name, called the cops. The cops were there. 

I explained to the officers that K has Autism. That we stayed over at a friend’s house and this happened. They took my information but nothing ever came of it. No one showed up at my door from any agency, charges were never pressed or anything of that nature. 

Now I did set in montion certian changes to prevent this from happening. Any house that K visited alot like Molly’s, her Grandfather’s, or where we lived door alarms were installed at all the houses. My house and my father’s there were window locks install, double key dead bolt locks, and the door alarms. I even want has far as to buy a harness from Custom made harnesses by Elaine. 

During the day, the harness was used when we went out to prevent K from bolting into any given direction. At night, I used the harness to prevent another night time escape. K would wear the harness and she would be tethered to my waist at a very short length. And this is how we slept – especially when we went to Molly’s or on the family vacation to the mountains where the area was surround by a lake. 

This kept K safe both during the day and at night. The above picture is of her at a charity walk that we did down by the shore wearing the hearness. 

I did look into the gps bracelet for her, however it turned out to be to costly. The county I lived in did have a program, but the cost per month and having to go there once a month to change the battery did not work with my work schedule. They were only open Monday – Friday and closed at 4pm. 

Now at age 11, the elopement factor is not done as often and K can go long periods without having an episode. But it is still there lingering in hind sight. She has done it over the years and has done it in school. She has run out of the classroom, tried to get out of a moving vehicle  (yay for child safety locks!), run back to a store, run away from a therapist or myself with that weird, giggly smile she gets when she wants to get into trouble on purpose – this she has done sporadically over the last few years. So all one can do is be mindful that IT can happen and not to get too relaxed about it.

Below are some links providing information about stories of kids eloping both with happy and fatal endings. There is also resouce information to help parents and links for Project Livesaver and Custom Harnesses by Elaine.

Autism: Wandering a hazard for more than 1/3 of Kids

Stories just in July 2016 with the children found alive:

Boy with Autism Found Wondering Around

Mom charged, Child with Autism Wanders Away

Boy with Autism wanders away from daycare

Stories with not so happy endings:

Two cases of young boys with Autism who wandered away and has fatally endings 

Avonte Oquendo – wandered from school, fatal ending

Missing boy with Autism drowns

Resources:

AWAARE

Autism Speaks: Wandering Resources for Parents and First Responders

Project Livesaver

The link for below picture is not attached. This is a PDF from the National Center for Missing and Exploited Children which needs to be downloaded inorder to view. Google the “Missing  Childern with Special Needs by National Center for Missing and Exploited Children”to read the helpful information.

Article on GPS device to help bring wandering people home

Custom made harnesses by Elaine 

HOUR 11 – E.R Odyssey Contiunes PART 3

Outside is a beautiful day …
Blue skies with puffy white clouds. The kind of clouds that make you want to sit back in a field and stare at the sky. While trying to name the shapes of the varous clouds. A bit of a breeze blowing to take the edge off the heat. Today would be the perfect beach day … enjoy the waves with your childern, family and friends. A great day to be on the boardwalk playing games, riding rides or eating ice cream. A glorious day to go claming in the bay – then enjoy the days catch with a surf and turf bbq with loved ones.

But none of that is for Keri and I. I will get a 5 min glimance of the outside when I can get a chance to have a cigarette. Keri is stuck in room 34 in the E.R. We have gone over the 24 hours of being here. We will now be working on 48 hours!

Currently, she is resting peacefully from a drug induced sleep. Keri had another meltdown. John was barely unable to hold her down. I had to call the nurse in. The Doctor gave her a shot of Ativan to calm her. These hospital’s psychiatrist doctor prescribed over the phone an increase of her current meds. Keri will now receive 3 times a day .1 mg of clonidine, 2 times a day 200 mg of tegretol. The abilify will remain the same of 10mg 2 times a day.

Before this meltdown, I finally was able to speak with her primary psychiatrist Dr. L and the CMO Case Manager. Dr. L told me that because Keri’s meds have been changed so much that she needs to go into a psych unit in order to have any additional med changes monitored. That also it is too dangerous to just discharge her after the hospital doctor sees Keri. Dr. L also stated that this emergency room has an obligation to keep her until a bed has been found at a psych unit. Her CMO Case Manager said the same thing.

A different Mental Health Administrator came in to speak with me. She was very nice and explained the situation to me. Currently, Keri is scheduled to see the hospital psychiatrist Dr. Z. He is contacted with the hospital on an on call situation. Dr. Z will not be able to see Keri until 8 or 9 pm tonight. From there he will pressure what whatever place to find a bed for her. Ms.A (the mental health administrator) is in the process of calling places in this state and other states to find a bed. Yes, a bed out of state since no other hospital wants to take her or has an open bed.

You read that correct – a bed out of state in an out of state psych unit because there are hospitals in this state that are REFUSING to take her!!! From what Ms.A explained, a psych unit can deny acceptence for any reason like:

•Low IQ
•Non-verbal or limited communication skills
•Wears a diaper
•Certian diagnosises – like Autism, Bipolar, etc.
•The unit thinks the patient will not benefit from therapies offered at the facility.
•There is an over flow of a certian diagnosis ie: to many people with autism.
•Age despite a hospital’s website says the work with kids 5 and up.
•Insurance
•Or pretty much any damn reason the deem fit at any given moment.

So pretty much Keri and I are screwed at this moment. We will camp here at the hospital until a bed opens up.

But wouldn’t this be a form of medical discrimination? If a psych unit has an open bed and a patient is in need of it…
As long as the patient fits the basic criteria of the program – a child in a program for mental illness that is designed for childern regardless of the above. The same would go for an adult. Or maybe this state needs to open more inpatient facilities for people who autism or bipolor or whatever. It is not fair to have them sit in the emergency room for days at a time while in crisis until the parent who is too fusturated, stressed and tired and says to hell with it. Then have to take an unstable person home with no other resources to help them.

I will not be that person. I will not allow my daughter to slip through the cracks because no one want to help a child with autism/bipolar. I will not allow her to continue to hurt herself or me or other people. I will not allow either of us to become a tragic news story. I WILL CONTINUE TO ADVOCATE FOR HER AND GET HER HELP.

My thoughts on the death of Jarrod Tutko Jr

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The death of Jarrod Tutko was a tragic and sad event to happen. This is a horrible thing to have happen to this family. Both the father and mother were overwhelmed in the care of 6 children, of 5 who have/had various degrees of disabilities:

  • Deanna Tutko, 13, who was deaf
  • Makayla Tutko, 3
  • Aaron Tutko, 12, has developmental disabilities
  • Adrianna Tutko, 10, she is in a vegetative state, confined to a hospital bed and hooked up to tubes and monitors
  • Jarrod Tutko, 9, with Fragile X syndrome, a genetic defect along the autism spectrum that left her son intellectually disabled and with behavioral and learning challenges, failure to thrive
  • Braelyn Tutko, 6, has autism

Like everyone else, I too, have questions …

    • Why was Jarrod not in school? Were the other children in school? (However, depending on the school district they may have tried to fight the parents on proper placement or even encouraged home schooling ~ my daughter’s district tried that at one time)
    • Did the family try to seek services for all of the kids, i.e. therapies, respite care, etc? Ask for help when the children protection agency was there? (with the expectation of Adrianna)
    • Why did the mother and father not alternate care for Adrianna and Jarrod? Give one parent a break from dealing Jarrod who had more behavioral challenges? (If it was a question to avoid possible infection to Adrianna, there is a thing called soap, Lysol, etc to prevent infection)
    • Why continue to have children if the older three had existing health issues? (My daughter has Autism, I decided to stop with her … because it was not fair to her and any possible child to come along in regards to the time, attention, and care that Keri requires. One child would get more attention than the other. Also there was the factor if the possible child had any health concerns to deal with on top of Keri’s Autism.)
    • Why did the Father not call 911 when it was first discovered that Jarrod Jr was dead?

There are a multitude of questions that can be asked. I am not here too pass judgment on the family. I believe both parents were overwhelmed and maybe services previously sought failed this family (if they were sought).

BUT there are those people out there who have nice normal families with neurotypical children that can never understand what it is like to raise a child with special needs and the unique challenges that come along with it. There are people out there WHO DO have children with special needs and would never understand certain aspects if their children do not have behavior issues.

I, myself. have experienced a child who ripped up the floor and mattress. A child who destroyed all the furniture in her bedroom. I have experienced a child who peed on the floor and smeared feces all over the floor and walls. I experienced a child who would hardly sleep and cry, scream and yell during night time hours. I have experienced a child with behavioral issues – self injurious and to others. I have experienced a spouse who could not cope with these actions, and all of it fell on me. So I know with only one child it is overwhelming …. I could never imagine to understand dealing with what that family dealt with on a daily basis for years. I could only say the Tutko family probably did the best that they could do with all of the challenges going on.

Rest in peace Jarrod Jr and may you be in the company of angels!

Inside the Harrisburg home where child died: ‘They were a fighting family’