In The Trenches of Autism Parenting-ABA

I always have been the type of person that didn’t shy away when things got hard. I would have my moments of fear and a slew of tears but I would always pick myself up with lessons learned, a few scars and a new outlook. I am no stranger to the trenches of life. My upbringing was often an up and down unsure where I am going to land type of life. Alcoholism ran rampant in my family and now that I am older I am thankful. The trenches are where people find out who they are and what they are made of. It is a place where character is built and lives are saved.

A diagnosis, thats where it all starts. One small “A” word and as you walk out of that office you are met with a list of recommended interventions. You sift through the wait lists and insurance requirements not sure where you are going to land. You put your name on a wait list for three different aba providers and sit back and wait noting the first to the call will be your decision made. A BCBA walks into your house followed by up to three technicians who talk in another language as your head spins and they call them “your team’ but you feel left out in the cold. You note immediately there is a stronger relationship between the clinicians than with you. As time progresses your techs, being at that ripe age of early adulthood, get pregnant, cancel sessions on account of “personal issues”, the are at the start of their careers so stay for only so long before moving on. Its a cold exchange as you stand at your kitchen counter watching the life before you knowing that person working with your child is not seeing them beyond the “program” they are told to run. You want so badly to intervene. You know they don’t truly get it. You know text books cant teach it. You know they aren’t clicking with your kid and you just don’t know why. They refuse to care for your child when they start having pee accidents or wont clean their nose when it runs and call you to do it for them because that’s “not part of their job”. This is the reality, I get it. I live it. I understand. I feel you. That is why I am doing what I am doing. That is why I am here. Even as we speak, at this very moment my son, just like yours, is at home with his own therapists. I’m living your reality right this very moment.

I know what it feels like to look at your child and listen to the moans praying they would produce even just one word. I know what it feels like to watch your child meltdown while the therapists push just a bit too hard while trying to teach a hard task but they have forgotten this is a child. I know that feeling of desperation and exhaustion as different strangers come and go from your house as you feel the judgments and sometimes hear a whisper. I get it. I’ve felt it. I’ve had it done to me. I pray I can offer both a place peace and progression not only for your child but for your family and you too.

I always told my fellow autism parents, ” I am not afraid to crawl into the trenches with you”. Until now, that meant a bit of encouragement, a coffee and sometimes a hug here and there but to me that was not enough. I felt like I needed to do more. I had pulled myself from the depths of the darkest trenches. I had done the research and one day as I sat in tears knowing the inpatient setting was no longer where I was supposed to be it occurred to me that it was time to do what I had been wanting to do for years. So, I studied, I learned the correct terminology for things I had been doing for years, I applied, did the trainings, and now here I am I am that therapist that has been in and out of my house for about two years. Now, as I sit in on meetings, I can say, “I see you, I feel you, let me climb in this trench with you. Lets walk this together. I have been there and this is where I am. This works and I have proof. I am here just as much as I am for your child i get it that’s often the missing link in this therapy. Your plight is not forgotten. You are doing a great job!”

After my first day in the field I sat in my car and had to pull over as the tears made their grand entrance. It had been a tough tough year. I had to take a chance at a job change for my own good and I wasn’t sure where I was going to land. I put in over twenty resumes and had gone on about three interviews to no avail. I guessed that most jobs did not require skills in breaking up fights and fifteen minute rounds. I could have never guessed I would land in such an amazing role. My heart felt so full as I thought about the prospect of bringing to a family what I needed when I was in their shoes.

To me, just saying, “hey, you are in a trench how can I make this moment better” wasn’t enough. (Don’t get me wrong, dropping off a coffee to an autism momma stuck at home is the ultimate gift but I felt I had been blessed with a skill that could allow me to be more) I wanted to ACTUALLY get in there because I know I’m not afraid. I had dug myself out of many and now it was my turn to show someone else the way out. Time for me to lead instead of leaving someone out to flounder.

To me, working with autism is not a job it is a gift. It is a gift of brilliance. And as I signed my name in the “therapist” box for the first time and stared at the parent box being signed by the mom I was there to help I realized my dream had finally happened. I was now doing what I was called to do. Thank God for the struggle. Thank God for the hard times because it lead me to the best of times and to finding the best in me and I can only hope that I can help others to find the best in themselves as well.

 

 

When Trust of Professionals is Lost

There was a development in ABA therapy this week that rocked my entire world. It literally brought me to my knees and left me sobbing as i hid in the basement. It was bad enough that my husband rushed home from work as I melted down in a culmination of complete mental and emotional exhaustion coupled with the complaints from our Technicians  that just continued to hit on every fear I had ever held. It was as if every vunerable place in my soul had been found and they couldnt wait to pounce.

We had our biweekly team meeting yesterday and everything was wonderful. I was coming off a very challanging 8 hours shift on the unit and running on 3 hours of sleep. But i got up and got the kids dressed, ready and onto the bus without a hitch. I walked back into the house to find that the sink had backed up and at 830 in the morning I stood there plunging the sink thinking anxiously, “I dont want the house to smell bad when the team gets here i so hope this works”. It took me rounds of plunging and putting my hand in smelly water in my attempts to fish out whatever was casuing the issue as aiden roamed the house as he popped in to watch PBS kids and headed back up to his room to swing on his sensory swing we hung in his room. and TADA I got it! I heard that familiar gugrle and the sink was empty! I felt so accomplished and i looked over at aiden and said, “hey man! Lets go get a shower go up to the bathroom”. As we walked up the stairs I began planning my day. I had 10 hours of therapy ahead. I got him in the bath and as i started to shower him down i heard the door open and the tech walked in (they dont knock anymore. Im layed back like that) I peered down the stairs and said, “HEY GIRL! You set up Ill finish aidens Adls (activities of daily living) and we should be good by the time session starts. I dont know about you but a trip to Mcdonalds to grab a coffee sounds great” (we are working with aiden at different venues to order and wait in line etc..). “Sounds amazing to me she said”.

You see this is how I treat my techs. Its how i treat anyone I entrust with my sons care because i know that the more you show appreication to your “clinicians” the more effort they will put in. I believe that the more a person is appreciated the more they will want to work for you. That, and flat out, I hate business and love people.

We had a great trip and arrived just in time for team meeting.  Two techs, one BCBA (board certified Behavior analyst) and me in one room. We sat for two hours running programs with him and discussing behaviors to be addressed, progress and any kind of business matters. Keep that in mind TWO HOURS. Now, this is when it happened. As she was putting on her shoes to leave she said to me, “We have some concerns about our clinicians coming into contact with urine and dirty things at your house and i have already written an email and i will be sending it out this afternoon. Gatta run and get to the next client i just wanted to give you a heads up” I looked at her in utter disbelief at this.

I digress to give you a bit of a background on this. My son who is now 10 is a severe autistic. He was 8 when i finally potty trained him on my own with no help. Up until about a month ago he never had accidents. I mean EVER! But for the last month we have noticed a regression in this behavior for some reason. One day, the tech came in and I expressed to her my concerns and pointed out a place where he had had an accident. It is centralized to two places. The basement, one small area where there are removable carpet tiles on cement floor and in his bed which is covered in plastic. WIthout going into too much detail except to say I had moved sessions up to another area in the home until i was able to adequitely clean the area with bleach and new carpet tiles and even placed a lock on the door so that he could not go down stairs alone. I had to throw out two couches and replaced the plastic on the beds (that i wash every day).

I was met wtih an email that copied 4 people threatening that if i did not rememdy the situation then they would discontinue services with us. I was told that it is not the techs job to take care of my child and that dirty clothes were left about on the bathroom floor and that was unacceptable as this is “therapy space”. This was a long email that detailed so many things to the point of saying that there was a time when they noticed aiden was wet and and i did not immetiately change him.  I sat in awe. It was apparent that these techs and the clinicians that knew that i was struggling with his new behaviors and had taken every effort necessairy to FIX IT without their help were talking badly about me behind my back. It was clear they were having no empathy at my struggle and had decided to add their apparent disgust at the situation to my already tired and anxious outlook on the behavior.

I sat crying in the basement. In the room we specificially built for ABA completely defeated for about an hour unsure of what to do so i did what i i do best. I opened the laptop and the greatest rebuttal left my fingers.

I closed the laptop to open up the view of one of their techs sitting with aiden before me as i continued wiping the tears from my eyes and couldnt help but feel the ultimate betrayal. Theses are the people who have been in my home the past year form upward of 30 hours and have seen me struggling to manage his behaviors and know the hurdles and i have catered to their every whim as i have tried to work with them and allowed them to even break dress code (at my request) because i wanted them to feel comfortable and welcome. I had let them ride off my BOGO coupons for them to get free coffees out of respect and thankfulness for their care, knitted baby hats for their expected babies, worked around their schedules and they dont even have kids!! All the while during the sessions I am the only adult in the home managing three children, aba, cooking the meals and cleaning the house on top of carrying a job. Not to mention a marriage that requires my attention. As they put in their three hour shifts through the day and head home to relax my day continues. My worry continues, my responsibilites carry on.  After looking over the email and talking to the overseer of the entire company of aba I was told that this particular BCBA was “their best clinican”.  I let him have it (and anyone who knows me will tell you i am the biggest pushover. I dont stand up to anyone. I roll oever and take it and deal with it internally). “There is only once incident i can recall that i have not cleaned my son immediately. It was 445 pm and he was with your clinicans I was cooking dinner and my other two children were working on homework at the dining room table. The tech and the tech in training came to me and said he was dirty. I replied ‘I cant leave the stove unattended’ your techs just stood there. I know they are not allowed to touch him i did not expect them to clean him but no one offered to either watch the stove or get the supplies needed to clean him to make it possible. I did what was safest at the time. It was less than 10 minutes and as dinner sat on the stove and your techs went back down stairs to wait for aiden to be cleaned up (again offering no assistance) I showered him throwning his dirty clotes on the bathroom floor until i could adequitely clean them at a more proper time.” he stopped me and replied “thats another complaint, ditry clothes on the bathroom floor you realize that is therapy space” at this my blood began to boil and i said heatedly “YOU REALIZE I HAVE THREE KIDS, I WAS COOKING DINNER, I HAD THERAPY GOING ON, A KID THAT JUST PEED HIMSELF AND NO ONE WAS HELPING RIGHT?!” Silence. “RIGHT?!” I said as i fished for a response and what came next was short of amazing “well i have to protect my techs” was his reply.

I sat there in disbelief. Crying from some swirl of emotionsand i couldnt tell which on was producing the tears. Was it the exhaustiong, the anger, the exhaustion, the frustration, the feeling of backstabbing, the loss of trust, the wonderment of where aiden fit into the equation if he even did at all, the amazement at the lack of empathy from the professionals who should understand my plight, the questions of wondering what else bad was being said without a chance at my defence or was it one of the other twenty emotions floating through my head. Even now over 24 hours later i cant wrap my head around it.  We just paid them $5,000 of our own money not even two weeks ago and this is the service we got?

at about 6 pm last night as my husband and i sat in our living room in complete silence just staring at the tv neither one of us really watching it i said i gatta write this one. I walked over to our son in question and kindly took the laptop onlly to find…. yep… he had peed on it and the computer was toast. David and i immediately took off the back of the comptuter to try to save it but it was no use and i lost it “WHERE ARE THEY?! WHERE THE HELL ARE THEY NOW?! I HOPE THEY ARE ENJOYING THEIR RESTFUL NIGHTS AT HOME! THEIR TIME OFF!” And stormed out onto the backpatio sobbing so hard that even the cat was concerned. She scurried over and began rubbing on my legs as i sat defeated. David sat frozen. As empty and depleated as I (and later would admit to being on the verge of tears since reading the email from the “Autism Professionals” that we thought were there to help us).

After i gained a bit of control I called my mom still crying just to vent. And during  a silence in conversation i just said “Im not looking for advice. I just wanted to talk”.

Tonight as i sit here after my sons birthday party I cant help but think of all the people who showed up to show their love to him. I cant help of think about all the people who are standing along side us FOR FREE and who arent afraid to crawl into the trenches with us and i cant help but wonder what place professionals really have in all of this. If theres no empathy theres no hope. If theres no room for love, theres really no room for growth. And when therapy says “this is meant to treat the family” there is a problem when after the “team meets” the family is left scrambling leaving nothing but chaos and disarry in its wake. I cant help but feel that the only real team is our family and friends. I think I have hit that point in my experience where I have to say, “enough is enough, all trust is gone and Ill take it from here”. And i have to understand that my greatest fears have been realized that there really is no help out there for us. I mean really if the “professionals” who are supposed to be put in place to help you are doing nothing but judging you in your own home at your most intimate and vunerable moments there really is no safe place am i right? Im going to end this with one of my favorite quotes by Theodore Roosevelt thatfits this situation so perfectly. And just as i leave every blog post I jus twant to say, Always choose to cheer one another on and if that cant happen then move on. Make a positive difference its never okay to criticize someone when you choose not to accept the battles they are facing seen or unseen. I leave you this quote. COnsider it seriously. It will change your life if you take heed to it. Cheers.

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