Autism, CBD and Complete Irony

So, this month I took a leap of faith that I never thought I would EVER take. For the past year I have been seeing that my sons anxiety and aggression were rapidly inclining. The push for medications from the professionals working on my son’s case was becoming increasingly stronger with each passing appointment.  I had tried just about every behavioral intervention out there. I tried adding more sensory items into his environment and even began to alter my schedule to provide for more “cuddle time” to allow more time to focus on holds to promote safety. I had begun to dwindle down on therapy time and even requested his therapists back up on what was expected of him in therapy with no significant improvements.

He was not attending at all to tasks in therapy and his ability to focus on any task for longer than thirty seconds was waning. He was no longer interested as evidenced by his laying down during times where he should be working in therapy. At meals when we went to restaurants he would often slouch in his seat or even lay down completely on the bench beside me with his iPad occasionally reaching up for another french fry on his plate. His yelling out was becoming louder and more often and he was losing control and I was losing hope.

I was three weeks away from an appointment that I new was going to be starting him on medications and I was dreading it. I had tried so hard to avoid medications but at this point I could see him struggling internally more and more to stay even.

I had heard a lot about CBD oil but had always dismissed the option being that I did not want to “drug my kid”. I had many friends who smoked the stuff and I was always declining and sitting that activity out. I even would tell people “that stuff is so bad for you. Im not getting arrested for that” and often i would be met with some coy rebuttal at how it is less dangerous than alcohol and the arguments would progress form there. But at this point now that it has been legalized in my home state of Michigan I had begun to see many parents using it with their kids on the spectrum and had begun seeing positive improvements in their children and so I began reading and researching. I could no longer, in good conscious, say it was not an option for us. It was either strong psychiatric medications (and i knew the effects of those) or CBD oil. And so, on a whim, I walked into the hempworx tent and looked at the product before me trying to push down all my prior views on Marijuana. As the kind woman sat in front of me talking about the many benefits of CBD I got what what I could as I battled to hold on my my wiggling 10 year old autistic son. I knew at that point I had to try. I owed it to him and to myself. I am a believer that it is up to me to “leave no rock un-turned” and I reminded myself of that as I filled that first dropper and hid the first dose deep in a cherry tomato.

That first day I noticed a difference. Many people say it could take weeks but i noticed right off. He was not screaming while we were out garage sailing. He was not trying to wrestle my phone out of my hands. We arrived home that night and my husband and I looked at one another knowing we both noticed it. We continued with the same dosage the next day, this time without hiding it in any food. Straight up.

After, about two weeks it was becoming increasingly evident that this was working. I kept stopping myself to recheck that this was in fact improvement or if i was just so hoping that it would be. But then people began to come to me saying “he is so much calmer in church” “I could see he was so much calmer when I came over today”. But it was three days ago when it was solidified.

We had an appointment with a specialist and I did not tell her he was on it. I had done this on our own accord. Now the first visit with this doctor Aiden was all over the place. he was melting down up and down the halls. He would not leave the laptop and desktop computers alone and the doctor could not get him to attend to anything. She added a diagnosis of ADHD and recommended a medication like ritalin or even an antidepressant to help with his OCD. She replied that “he is very bright but due to his distractability medication is recommended”.  But this time, this time was different.

As we walked into the foyer the nurse asked him to get on the scale, he complied even giving up the iPad. She then asked him to go to the ruler on the wall to see how tall he was and again he complied. He walked down the hallway passing computer after computer with no issues. When the doctor finally entered she began to take down the information and we began to speak as Aiden sat quietly with his iPad on the little doctors exam bed.  When it came time for her to assess Aiden she asked Aiden to turn off the iPad which he did and i gently took it from his hand and set it on the floor. He made no attempts to recover  it and as the doctor asked him questions he began to respond. I Saw the surprised look in her eye as she said, “you have done great with him mom he is like a totally different kid. I’m truly impressed”. As we ended the appointment and I read the doctors appointment notes and recommendations I began to cry. My biggest fear was starting him on psychiatric medications. Working on the unit I had grown to harness an avid fear of them as I saw what they could do to people and I had developed the belief that once they were started they were very often never stopped.

As I sat in the car reading the note I began to first let out a sigh of relief that we were not only being helped by a more natural means and then I began to laugh at the realization that among all my weed partaking friends I would be the first of them to get a medical marijuana card. While the CBD we are using is, at this point, THC I plan to try that route here in the near future as I am seeing more and more people having success with it. Moral of the story, Natural means work. Do they always? No. Do I have any regrets? Only that I didn’t try this sooner because I am now a believer that CBD gave my son his smile back.

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!”

It’s Not The Kids, It’s The System

The Ice was freeing tonight. The way my equipment huged my hips and sat tightly over my rib cage hugging me as the sweat dripped down my back. It was my one autism free hour. It was my one hour to remember what it feels like to let the cool air hit my lungs with every stride feeling the strength in my legs. Hockey always was my escape. Happy, go hang out at a drop in with friends, sad, take a radio out to sticks and pucks and just chill, angry, a stick, a puck, rock and roll and a few dozen slap shots until I’m gasping for air. Its always been my escape from the real world. Thank God I still have that one thing because today, I really needed it.

My day started out with a wet bed, wet kid and an insurance bombshell. “that company is out of network” the lady from our insurance company said as I broke down in tears. I knew she could hear the shaking in my voice and her tone changed and grew softer. We had been in the process of obtaining a speech device for our son to help him to communicate since November of last year. We have been attending speech appointments with a speech therapist to learn how to use the device. We had preapproval and I had been in contact with the company that makes the device about a half dozen times and now we sit almost five months out and this device is still not in our possession. I called our insurance company today just to follow up and was told that this company we had been dealing with is not in network and the $6000 (U.S dollars for those of you out of country) device would not be covered. The insurance company and the company that is responsible for providing the device were then put on a three way conference call and as I tried to compose myself in the meeting I couldn’t help but at one point say “I just want to talk to my son why is that so hard?!” At that the lady at the device company said to the insurance rep “you know she cannot get this device through another company as we are the only ones who provide this particular device”. It was then that I heard a glimmer of hope in the insurance reps voice as she explained that in this case there have been exceptions made and she would put us through to someone to see if we could see about a special approval which will take fifteen days to get an answer back. I started to gain composure at this point and began to point out to both the insurance company and the device company that in my five months on this battle, eight or nine dealings and pre approval it was never mentioned to me that their company was out of network and someone had dropped the ball. What topped all of this off was during this forty five minute exchange my son was in and out of the room trying to get my attention and I had to shoo him out of the room which i hate. I tried to quiet his moans and even gave up my computer and had to battle him to keep my phone in my possession. That’s the truth of it all. I was battling insurance companies instead of taking care of my child.

I had one hour before i had to be to work and i had to get it together and the therapist for my son was on her way despite the emotions and thoughts swirling through my head. I ran through the shower deciding not to wash my hair there was no time and soaped up rinsed off the tears, dried off and dressed. I got out of the shower and noted that my son had his pants on inside out and backwards. To avoid judgment from the therapist on her way I rushed to dress him appropriately. I called my dad to make sure he was on hi sway to sit with therapy while I worked for the three hours session that was awaiting me. I had to hold it together for three hours at least. He was just around the corner and as my son finished his lunch and I sat at the table with our technician reminding my son to use a spoon I packed up my iPad and ran out the door promising i would shut off for this three hours and enjoy my session because honestly I love my job.

About one hour into my three hour session i looked at my phone (that is usually on do not disturb but with special needs at home I have to keep it out just in case of emergencies. I look down to a text from my husband who had arrived early telling me that we need to watch our tech because she has been on her phone a lot and our son was on break almost the whole session I rolled my eyes and texted back “I cant talk right now I’m in session”. My blood boiled. I hate it when techs are on their phones during session. I get it life happens but please please please don’t waste my sons time for a paycheck. Please don’t do your homework or read books on his breaks? the quality of my family’s future is in your hands. I get it, for emergencies or for communicating for the BCBA yep totally get that sometimes you have to leave it out especially if you have kids I’m all for that but please I am keeping my kid home from school two days a week for therapy if you aren’t going to work with him… cya….

It took us five years to obtain ABA. My son was diagnosed at a time when autism was not covered by insurance. I respect what we have now. I know how I agnoized over not having services. Long nights and days watching my son stare at walls and watch Finding Nemo on repeat knowing there was help out there and we couldnt reach it. I knew of families who sold their wedding rings for two more weeks of therapy. I tried the medicaid route but we were denied. They said we made too much but what the cost of aba would be out of pocket was almost equal to what we made. Even now my son who cannot talk does not qualify for any form of disability. Its been a ride let me tell you. And as I watch therapists come into our home and do their homework on therapy time my blood boils. I know the value of therapy. I live it daily.

I got in my car after work and drove straight home and sat at the table exhausted. “Come sit at the table we need to talk” i said to my husband. We discussed our issues with our technicians and I just said “what is wrong with today? what is wrong with people don’t they care?” I couldn’t cry anymore but he grew silent as his face grew red and I saw the tears welling up in his eyes. I just let it go and silence fell over us as we both felt defeated. “This is why! This is why I went into this field because these children and their families deserve the best. They deserve to be the center of it all. If I can help one family then my dream is complete.” I said as if I am trying to fix my own world by helping another. But then I felt a tinge of anger as I wished that someone would do the same for us. Its all so cold. So distant. a quick paycheck for so many that leaves the family in the dust and disillusioned and defeated wondering there is any hope in the world for their child.

The hardest part of the autism world is not the children. It is the system. It is the system and its codes. Its the red tape and the hoops. Its the lack of people who truly care. Its the lack of knowledge and education. Its the lack of empathy that gets lost in the paperwork and bottom lines. There has to be another way. There just has to be

***this is a picture of me and Aiden at the Joe Louis Arena in Detroit Michigan USA. He was yet unable to talk during this time but he sure loved to skate!! This is my favorite picture of us to date*** NO LIMITS

hockeyaiden

 

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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