Let’s Talk

hello friends. I couldn’t wait to get home to my laptop today. I know I havn’t been keeping up with this blog as of late but I have been focused on some things with my sons therapy thus my focus has been else-ware. But today was pretty awesome.

I live in Michigan and today the Autism Alliance of Michigan put on their annual navigating autism conference for all of those in the area. The morning began with me getting in my truck which adorns my “child with autism on board” stickers in almost every back window turning the key and hitting the door pad for the garage door to open… insignificant right?….. well the door was already open and as the door began to lower behind my truck I couldn’t help but giggle at myself as I pushed the button twice to re-open the door. Just another morning after a sleepless night I thought as I backed down the drive way.

I grabbed a couple gallons of gas as I had let it slip into the “extremely low” category with 6 miles until empty (nothing like living on the edge) and hit the backroads that would eventually lead me to the highway. It was a perfect morning for a small drive. The sun was out and I was headed to the conference where I would be met with some friends from my local autism support group. I turned on the radio and my truck was filled with oldies music leading me to remember the family roadtrips growing up as my parents would play the oldies like “brown eyed girl” and “under the boardwalk”.

I walked in and settled at my table with my friends just before the panel began to speak. I leaned over to my friend as this was her first time to attend a conference and i said, “get out your tissues. you WILL cry, I cry every year and I’m not a crier”. A father spoke, then a mother, then a sister as both my friend and I regretted the decision to wear mascara almost in unison. What hit me the most though was the sister as she spoke of her brother. She kept repeating “My normal growing up was ________”. I sat there staring out the window at the cars parked in the parking lot wondering would my kids would say their “normal was”. Whats my normal I thought….. I mean, “what is normal parenting”? My special needs child is my oldest so my normal in parenting is different than everyone else’s parenting normal. I pondered this a moment as I tried to focus on anything but her sincere poetic monologue (I don’t do well showing emotions to anyone, I much prefer the closet breakdown).

My parenting normal, is having more therapists numbers in my phone than friends’ numbers.

My parenting normal is spending every free dime not on recreation but therapy in hopes of even a bit of progress.

My parenting normal is throwing out furniture after my son pees on it when there’s no chance of salvaging it and being left with an empty room that I refuse to fill less it happen again.

My parenting normal is long phone calls with insurance companies to obtain coverage for a therapy while my child sits quietly by incessantly rewinding the same five seconds of wheel of fortune and I can’t reach him.

My parenting normal is looking at my two typical children wondering how I will go about getting them to soccer practice with severe autism in tow.

My parenting normal is taking turns with my husband going out to places my son cannot handle.

My parenting normal is knowing that there will never come a day when all three of my children will be able to reside in the same school district.

My parenting normal is not fitting in with other parents because I dont have time or the ability to attend the things that they do. (even in cases of adaptive sports, My son just cant do it)

My parenting normal is begging people to visit but my house remains empty with only the sounds of iPads and “Do this” from his therapists.

My parenting normal is a glass of wine to ease the effects of isolation.

I could go on but I will not for the sake of the purpose of this post.

After such a thought provoking parent panel we all consequently broke off into break out sessions. The first I attended was one that I, before I left, Thanked the teacher with tears in my eyes. She was a psychologist who had recently crossed over into the ABA field and she discussed how to incorporate humanistic psychology into ABA and what that would look like. I sat rigid though the whole class. Focused. Intent. She wins! She validated many of my thoughts on ABA and its almost complete lack of room for emotion. I sat engrossed as she spoke and I cant wait to email her this evening. I have a suspicion that she may change my life and be a huge asset in my work as an ABA behavior technician. Lord knows I have much to learn and I want to learn it right the first time.

The second break out session I attended was on on augmentive and assistive communication technology. With Aiden obtaining his device soon i was so excited to see this on the agenda for today. I sat down took out my notebook, pen and set my phone to my right just in case my sons teacher were to call for some obscure reason. The teacher who is an SLP handed out a core vocabulary board and a packet of her powerpoint presentation. I learned so much from this woman!!! I learned so much that I actually texted my mom mid class that I was so furious that I had not been told a lot of things.

For instance, did you know that in proloquo2go and the general pecs system that the  pictures are actually color coded according to word function? Dude! I had been using these programs for about 8 years and no one ever mentioned this to me. I was furious. for eight years I sat looking at these boards with all these words as a whole confused as to how they worked and finally, today, because I attended a conference, I was finally notified that there was a specific method to the madness. so for instance verbs have a green background adjectives have a blue background etc.

coding

eight years and dozens of therapists and thousands in co pays and I learn this at a free all day conference in a session that lasted 45 minutes? wow. Sad really.

 

I had to leave a bit early so I missed one of the break out sessions but I would say that the day was a great success. I am noticing that every year the number in attendance grows and the amount of people I run into that I know increases just as much.  What a thing to be passionate about… This autism stuff… What a community… What a calling…

my takeaway for today: Therapists, don’t assume competence. We parents have a lot going on. Please give us the information to make things easier. and parents You have never learned everything despite your experience and I know life is easy but maybe if you take a moment, examine the tools set forth for you, you might notice some patterns that could enhanse that tool or even make it more functional. Don’t give up, don’t give in, keep learning, keep sharing, keep loving and as they said today “Have FUN!”

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.

 

 

The Undesired Road Often Leads Home

In about two hours I will walk into a new job working with children on the autism spectrum and I cant help but think back to the happenstances that have led to this very moment. I am about to do a job that I said that I “would never do”.  “I don’t like kids… I could never work with kids… they bug me…”. Yes, I admit almost sheepishly that those were the very words that came out of my mouth.

In college is where my passion for psychology was realized. Now, with that being said, my most hated classes to take were behavioral modification and child psychology. It always bothered me as I sat there at the young age of 18 learning about phases of development as the older students in the class raised their hands to share stories of their children. I remember feeling highly annoyed and just wanting to get through the material so I could get a longer break between classes so I could have a bit more time to prepare for my abnormal psychology class that followed this one. I knew child psychology was never going to be in my future.

Behavioral modification was a bore. I squeaked by with a B+ and breathed a sigh of relief when it was over. The whole operant conditioning and Skinner and Pavlov was interesting enough but the implementation of techniques didn’t quite catch my fancy. I wanted the schizophrenia, the bipolar, the identity disorders I wanted the obscure. The more disordered the better in my suburban sheltered adolescent mind.

In high school I was often paired with special education kids which I now know was part of a peer to peer program and I loved every moment of that. I always struggled in school due to issues with ADHD and because of my attention limitations my self esteem had virtually collapsed in on its self despite my intelligence. My grades were low and so after so long I just gave up. But one year in science class, i believe it was my sophomore year, my biology teacher took a chance on me and paired me with a boy and said, “sue N___ needs your help this year are you willing to help him? I think you would be of great help to him”. Ecstatic at this request as no one had ever asked me to help anyone else due to my deficits I diligently learned the material and listened harder in class and focused on helping N___”. I remember telling my mom excitedly how I was helping this boy and how amazing he was not even realizing that I was getting all As on my tests. and looking back after all my time in the helping professions and after watching my sons progress i realize that he was actually helping me more than I was helping him.

During my senior year in high school my grades were so terrible I had to be taken out of school and a tutor came to me. Yeah, seriously. and it was about this time that I began reading a seriese by the author Torey Hayden. She wrote books based on the special needs students she worked with and described many different situations and ways she would help these students. I found them riviting. Yet still told myself I would never work with kids. It was just too tame.

Fast forward to 2010 and my eighteen month old son is diagnosed with a severe form of autism and i was thrown into a world of PECS cars, picture schedules, therapists, sign language and early intervention programs. I was surrounded by developmental milestone charts (that i would eventually burn in a neighbors bonfire)  and wooden building blocks. I was lost and wished I had paid more attention in child development class. Wished I had listened more to the moms as they spoke of their children instead of just doodling small poems in my notebook about my then boyfriend to get through class.

I was lost. I didn’t know any educational songs. I didn’t know how to do anything. I stood there staring at his early on psychologist wishing she would never leave because her being there made me feel so secure. But as with anything I adapted. I learned. I grew and I dove in head first.

In 9 short years, I have learned all I can about autism and those with children just diagnosed often come to me for guidance. I have published in autism parenting magazine and in a few short hours I will be starting my first day working with children on the spectrum.

It’s funny sometimes where life takes us as we make other plans in our head.  I walked away from my inpatient job and am going to do the very job that I said I would never do and I couldn’t feel more excited or blessed. Looking back its crazy to see just how far back the road to this very moment extends. I cant wait to make a difference and hopefully be that therapist for that child and their families that I needed when I was just starting out. Lord knows I had some of the best examples at the start of my journey. Most of which I still keep in contact with.

This is a great example of not letting life hold you down. Sometimes, when you feel stuck all it takes is one step out of your comfort zone, one look around, a deep breath and “20 seconds of courage” (thanks mom) to make your life meaningful again.

Cheers to all of you. and “just keep swimming” right Jenny? 🙂

 

Autism Parenting and Mental Health

Imagine this… you are standing in your kitchen and the television in the living room is playing Trolls for the one millionth time on high volume, your son is in the other living room laughing with his friends as they play fortnight on the ipad and they are yelling and laughing in excitement, your special needs son is in the basement and you can hear the therapist working with him as he yells out in frustration and you know he just bit himself again, dinner is cooking on the stove and your mind is going a million miles a minute trying to remember that one kid still has homework, the other needs a bath and oh yeah don’t forget the laundry in the washer again… Your husband (your only real adult interaction of the day) isn’t home beacuse he had to work late and you know when he gets home he will be understandably exhausted so he will come in, eat and that will be the last of him. You get dinner finished and the children wont sit and your special needs child wont eat what you made so you fly through your meal scarfing down what you can so you can go make something he will eat even though the meal you made was his favorite last week. after cleaning the kitchen and doing the homework and bathing the kids you sit down on the couch starting at the tv noting you aren’t even watching it, exhausted, knowing you will get up tomorrow to the same challenges. And this is a good day.

I want to talk about something that is almost so taboo that its hardly ever discussed. I want to talk about the mental health of those who caretake those on the autism spectrum and really if we are honest any special needs individual. I want to talk about the daily struggle in our minds as we navigate the care of our children and the battles in our minds. There is a constant worry that we carry that never really goes away. There is fear, there is anger, there are the questions “why?” the sleepless nights, the moments where we ask ourselves “am i doing the right thing” knowing we will never really get that answer, there is endless laundry (especially for the almost 20% of us who will never have potty trained kids or those of us fighting that battle and somewhat winning so the hope keeps the pull ups in the cabinet despite the mess), the broken furniture, the door locks, the window locks, the fridge locks, the neighbors that aren’t quite sure what to say so they just look out of the corner of their eye when he is outside, the loneliness, the isolation, the loss of self, the constant placing of yourself last out of love, the jealousy and last but not least that never ceasing feeling of loss and desperation. And when you put all of these things together its a recipe for disaster.

I find it troubling that those of us in the autism community don’t talk about this more. I mean, we are all battling it some more than others of course but its all valid. As I travel from Facebook site to Facebook site I cant help but Laugh at the memes that other autism parents have made with funny sayings, you know like the ones that make light of the difficult times. Sure, they are great, they are funny and I often share them on my facebook to make light of the situation but when you really sit back and think about it the things that we are laughing at are the things that are really breaking us. What if I told you that our jokes are really our methods of survival and our attempt at remaining valid to the rest of the world? Need an example of what I am talking about? Observe.

autismparent

Ok so yea, this is a picture that most parents would get even the ones with only typical children but what if i told you the precipiting behavior for this photo and its saying was what caused that parent to lose it earlier that afternoon? What if i told you that child had talked about nothing but that lego man for hours upon hours and the parent had spent most of of their week looking for it as their child screamed and melted down? Because honestly, that is the reality for most of us but we hide it. We hide the battle that got us to the point of this being funny.

There is a point of exhaustion that we, as special needs parents reach at various intervals and sometimes we are lucky enough to find someone at the same level as us and we connect for a while until we slip into different stages of emotion. But I think its time that we talked about all of this. Got this all out in the open and said, “Funny, not funny”. We need to stop saying we are okay when we aren’t. And most importantly the mental health system needs to step up and recognize that we CAN’T get help. We don’t have the time, economic resources or the availability. And for those of us that do seek out help we are so conditioned into the thinking that “they don’t get it, they don’t get me, my situation is so far fetched they wouldn’t believe me if I told them I found my son on the roof last night” that we either don’t share the realities or we are proven right in our assumptions.

I’m gonna be honest here and say from my experiences and interactions with other parents there is a high rate of substance abuse in the special needs community be it Alcohol, marijuana, sleeping medications and yes even pain medications you just don’t hear about it or see it because most of us don’t get opportunities to leave our house much and we cant get the mental health resources we need to deal with it effectively because lets face it, mental health professionals wont come to us and we can barely make it to the grocery store. (thank God for Grocery online ordering)

One could argue that with the advent of social media we have created a greater sense of community among those in the special community. Sure, there are autism support pages and the like however, It is rare for a parent to go on there and say, “I am struggling”. These pages are often filled with people asking for help in creating their child’s IEP or advice on how to fix a new behavior challenge but almost never do i see parents asking for help for themselves. Are we hiding behind the autism lingo or are we really that lost that we don’t realize we need help too? Are we trying to be super parents or are we just so conditioned to being told no when we ask for help that we think no one can help us?

This is something as a community we need to fix. we need to stop hiding the fact that we are sad, depressed, mad, can’t turn down that drink (that turns into a half bottle of wine) at 5 pm when everything is spinning around us, can’t sleep without that hit or cant relax without that vicodin that calms our physical nerves that are really caused by stress… and the mental health system needs to step in and say “this is a community we are failing and we need to do better. We need to create a platform that is both accessable and safe for these parents to get help”.

Caring for a special needs child is stressful, its hard, its isolating and it really needs to take a community effort to get them to be the best that they can be. But the community around us can’t help us if we keep hiding. I say, its time we started talking about it. Its time we approach our local autism supports and say “hey, by the way, there’s this thing and we need to talk about it”.

 

Why I Share the Hard Moments of Autism- The Inpatient Experience

“Sue, come with us please. _____ is asking for something and we don’t know what he’s asking for” she said interrupting morning report. Knowing who she was talking about I knew why she was asking me. A nonverbal autistic man, and I had the most experience, I knew basic sign and had brought in a PECS ( Picture exchange communication system) to help him earlier in his admission (that his group home workers didnt even know how to use and later would take it with them and not return it leaving him unable to communicate once again) and everyone was asking how it worked. I couldn’t help but feel fear as I thought about my three year nonverbal child at home.

I walked into the room to find him in four point restraints and security standing by as the nurse was in the medication room drawing up some sedative to help calm him. I said verbally and in basic baby sign (because I was not sure how much he knew noting he was older in age thus was raised in a time Long before autism had the treatments they have today) “Hi man, what do you want” (signing “you want what” as the exact translation in American Sign Language) he stopped and calmed just looking at me. I tried to think of the most basic of needs and immediately, noting he was of bigger stature said, “you want eat?” While using the sign for eat. At this question his eyes lit up and he said in that familiar autism tone “wa, wa, wa” as he vigorously shook his head.

I looked at security and the other technicians in the room and said “I’ll be right back” and dashed into the units kitchen to see what I could find. I warmed up some Mac and cheese as quickly as I could and juice and a spoon and re-entered the room where security was still standing by and the nurse had re-entered the room. I asked security to release one of his hands so he could eat and security complied still silent and nervous preparing for a possible battle. I understood, this guy was big and even I was mildly unsure about about how this was going to transpire but I also knew that autism is different than other disorders and a fight was unlikely now that his need had been met. He finished the first small plate of Mac and cheese and i said “more” as i signed and he said calmer this time “ya” as he continued eating the last few bites. I ran and got another plate and brought it in  I told security that he would be okay now and looked at the nurse still holding the shot in her hand and said, “he wont be needing that shot he just needed to eat”. But the nurse said, “I have to give it to him its already drawn up”. As she gave him the shot to “relax” him I couldn’t question it. I felt a tinge of anger boiling up inside me but then I knew nothing about nursing and meds I didn’t know how all of that worked and I was not going to confront the decision in a patient room (and would never end up doing it all). I stood there while everyone began asking how i knew he was hungry. I just looked at the man in front of me enjoying his Mac and cheese and said, “I got you man. High Five!” And he high fived me back never taking his eyes off the rest of that amazing food in front of him.

Two weeks after this interaction I quit my job on the psychiatric unit. It left a lasting mark on my spirit and I knew I needed a break. I was disheartened and disenchanted to say the least. This was the first time that the reality of my sons disorder (and really all mental disorders) had hit me in a way that it hadn’t before. This was the first time that I realized that in the inpatient setting no one really knows anything about autism. This was the pivotal moment at the beginning of my journey with autism that I realized that really, I was in this alone. This was the genesis of my fears and on this day, I made the promise that no matter how dire the circumstance I would never take him to a hospital. I would never put him in a group home. If there ever came a day that he got violent I would bare it because the results of asking for help would be more painful than a few Bruises. I would not call the police, I would not enter the er. After 13 years on the psych unit now I have seen many physical altercations surely by now I should have the tools to navigate a crisis situation. No one knows my kid better than me… Right?

There is a certain unwavering anxiety that comes over you when you realize that you are not only the front line but you are also your child’s only buffer between the world that loves them and the world of the “system”.  I have no adequate words to describe to you the realities of it all. This is the side of the Autism that no one really talks about it because not many know the realities of the system that waits out there for them. I will admit to you that this is one facility and one experience but its real. I understand that every child, ever situation is different but if our clinicians are not educated how can they help our children and our families at a time when we need them to know how to help? This is why I come to you and say “stop hiding your realities. Stop not sharing your pictures of the hard moments. In doing this you are not preparing the world to help you and your child in times of crisis”. It’s great to share the positives and the triumphs. It’s WONDERFUL to see all of our children succeeding but our kids will not always be succeeding. There will be hard moments.

After two years of taking a break from the psychiatric unit I returned with a new set of eyes, an older child still nonverbal and with a lot more experience with the “tough” parts of autism. Since my return 5 years ago, I have seen only one person with autism but as i see the numbers of children increasing year by year I find it increasingly more important to talk about it. To share my experiences with the mental health community, especially the professionals because unless you talk to someone actually living it you cant know what the real struggles are. They can’t know how to help if we don’t equip them… it’s our responsibility as caregivers and advocates to help the system help us. We are a team after all.

Real Autism Acceptance-Space is All You Need

This morning after getting my other two Typicals off to school after what had proved to be a hectic morning as I carefully picked out the perfect outfits for picture day and having to chase the bus to its next stop after missing it at our assigned one I walked into the front door and took in the silence before ABA was to arrive. I walked up stairs and just stared at aiden as he sat in the middle of his bedroom floor in a crouched position while playing on the iPad his back toward me. I crossed my arms and began to think about what the day ahead would hold in store for us.

I love Monday’s and fridays. Those are the days that my other children head off to school and Aiden get to face the day together. It’s our time to reconnect and even though therapy is in session there are times like today where we get two hours alone and most times I just let him roam. This is our two hours of the week were we are allowed to be alone to engage in the quiet and comfort of ourselves. This is usually when I open up my blog and reconnect and this is when he catches up on his YouTube  videos and checks out from the world we force him to be a part of.

Today, As I showered him I plugged in my iPhone and turned on one of my favorite Carrie underwood songs to get my day started but not ten second into the song he sat crouched in the tub holding the handheld shower head, covered his ears and began moaning. “Oh, this song must have high pitched sounds I can’t hear” i thought to myself as i reached over, dried my hands and began searching for another song with a mans voice that might not bother him so much. I hit play and as his body began to relax I walked over and crouched on the floor beside the tub and began washing his hair. As i reached over (because he never stands in the shower just sits crouched with his back to me) I couldn’t help but feel the calm. My mind began to find my fellow autism momma friends and I wondered how many of us were doing the same things at the same time. I thought about the amazing lives we lead. Even before I  rolled out of bed there were autism parents communicating about the sleepless night they had just endured or the troubles with trying to get their child off the ipad. Struggles all of which i was facing or had faced at one time and I couldn’t help but, for Just one moment, to feel like my life had a purpose again.

As I helped him out of the tub and dressed him in some comfortable pj pants my hockey friend had given me and rolled them up at the waste because they were just a tad bit too long I couldn’t help but take a breath and be thankful for this quiet time we get now. I thought about all the time we had been cheated out of as i watched him get on that big school bus when he was just two years old. After he was dressed i kept my iPhone from his reach and said “brush your teeth first and you can have iPad time” and i placed the toothbrush with blueberry kids toothpaste already on the bristles (as he hates mint) and I watched as he held it close to his lips and moved back and forth in an attempt to trick me into thinking he was really brushing his teeth. I giggled and said, “nice try dude. Show me happy” as this he will usually smile some little smile and i can see just enough of his teeth to brush. I put my hand over his and we worked together as he slightly resisted causing me to use just a bit of pressure to get his teeth brushed as best I could. After he spit and took a drink straight from the stream of water coming from the faucet he looked in the mirror and smiled to look at his teeth and ran over to my phone using the passcode i had no clue he knew and he was gone. I stood there for a moment just thinking about how great he did and began to giggle inside at how far he has come. Three years ago toothbrushing included holding him down to the floor to brush.

After therapy was up and running I set up what would be my “perch” for the next however long, lit a candle, took a big first sip of coffee an pulled out my list of providers that I had compiled the night before with the help of some of my fellow autism parents in the area as we are seeking out new therapies to try and began calling and began dialing numbers.

I called the first two ABA centers and was told by both that there was a two year waiting list for services and immediately said “thank you” and click… I moved on to the next. Thankfully i found one with immediate openings and quickly gave my information and high fived myself in my head. I called speech and OT to see if we had moved up on the waiting lists and indeed we are getting closer. For OT now we are are number 78 on the list (we started at 111) and for Speech we were 229 when we started and we are now number 165 on the list (but was told that one of their therapists went out on maternity leave today) so we are moving up in the world however slowly we are moving closer.

As I hung up the phone and looked at the clock I realized I had been on the phone for over two and a half hours and decided I was done. As therapy ended for aiden I helped him to make a ham sandwich and let him roam. I found my wireless keyboard (As aiden had peed on my laptop last week and killed it) and opened up my blog and began writing.

As I sit here drinking hot tea and enjoying the sound of the dishwasher mixed with his random happy moans in the basement I cant help but feel content. I closed all my blinds to hide away from the world and created the perfect autism world void of any judgment or expectation. It’s like creating a perfect world for just aiden and I and what a beautiful place it is.  While i realize that therapy is necessary (at least for now) I think I’m finding more and more that just accepting it sometimes is just as important.

The battle against autism in a world that doesn’t support that battle is exhausting and sometimes I think too much emphasis is placed on therapy to “help” our kids when sometimes all our kids need is just a little space to be themselves in a world that is consistently trying to “change” or “help” or “fix” them. I think that sometimes we as parents, in our own desperation and fear keep adding therapies (not judging I’m guilty of this too) in an attempt to give them a “future”. Well, to that end I have realized these past six months that sometimes its not that your child needs more therapy sometimes they just need some downtime and someone to accept them where they are and to meet them there once in a while.

And I get it. Between your child, other children (if you have them) therapies and even your own internal emotional and psychological battles it’s exhausting and the thought of setting all of that down for a day of “autism acceptance” can be tough (especially when the past couple days have been rough or you just cant seem to extinguish that problem behavior no matter how hard you have tried) but I think its vital. These Monday’s and Friday’s now, I have learned to love them. Especially Monday’s because there is a two hour break in the middle of the day for just nothing and that’s what we do. We both do what we want uninterrupted and its great therapy for the both of us.  I let him go with his obsessions and he lets me go with my writing and once in a while we check in on one another to share our I love you  sentiments me with the words and him with letting me kiss his forehead and we separate again.

I guess the whole lesson in all of this battling, both the autism and the world is to remember that sometimes the greatest battle can be remembering that there is a person behind the diagnosis and that person needs love and approval and a moment to just be without judgment or fear.It has been this lesson that has taught me the true meaning of “Autism acceptance”. Sometimes, I let the autism go. I just sit back and watch it. I observe it and say to myself “there it is…Autism unrestrained… isn’t it amazing? Isn’t it beautiful? What a beautiful boy with such an amazing mind!” You cant battle something you don’t understand. You cant battle something if you never fully let it be to learn its patterns and what feeds it. The fact that autism has no manual is all the more reason to step back and let it go so you can learn it. So you can use the better parts of it to better your lives. How can you know a child’s strengths if you are always working on their weaknesses. So take a moment, take off the restraints of fear and judgment and just sit back and let it go. Let the silence of it speak to you. Stop filling the silences with chaos and intervention. Just give it a moment to materialize. Listen to it so you can learn from it so you can love it.

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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