When the Special Life Crashes In

I’m usually the mom that says “I got this. Its no big deal. Im the one to push through it all and just keep pushing foward. I don’t yell much. I don’t protest much. I just keep going but then there are those moments in the quiet when something happens or when a song comes on the radio at just the right moment and it all comes crashing in.

Like today, after waking up and getting my special needs son on the bus and rushing over to the doctors office two towns over to figure out whats going on with me. I havnt felt good for a while now. My hair has been falling out in clumps when I wash my hair and I have been running exhausted for the last few months. I finally got brave and went to the doctor when I had a free moment and he did the full work up. “Rest…You need rest” he said. “your blood work is awesome for the most part except for one little thing… did you know that this shows you are getting over something viral?” I just sat staring at him eyes still blurry from sleep. I rushed from there to my favorite hang out to do a CPR course (I would later be told would not count and would have to redo), rushed to work, then headed home for the kid round up and to cook dinner.

I stood in the bathroom looking at the showering task analysis hanging in the shower with the radio on and that one song came on and it was over. I slowly sat on the floor next to the tub where my almost 11 year old son sat crouched on the floor of the bathtub drinking the water from the handheld shower head and put my head in my hands and cried knowing his therapists would be mad that I was letting him do this. This is not in the plan but then, I’m not his therapist and sometimes that will just have to be okay.

I thought about the kid down the street, I thought about all my friends in the same situations and I couldn’t help but cry harder. Prescription: Rest, Special needs Life: work, worry, work some more and worry somemore.

I talk autism a lot, but a lot of people don’t know that I have two children I call my “typical children” that have been diagnosed with a form of progressive hearing loss. When the Doctor came out and told me that my then six year old son was “a good candidate for hearing aids” I laughed. No seriously, I laughed right in her face. I thought it was a joke. She just stood there with this confused look on her face “No seriously this is not a joke”. This was followed by his sister failing a hearing test at school and me repeating the same appointment and her being placed in hearing aids as well. This meant a whole new journey. Different battles. Now, my son with autism has Pica and has a tendency towards rubber. Guess what hearing aid ear molds are made out of? Yup! Rubber. I cant even begin to tell you how many hearing aid ear mold we have gone through because he has eaten them. How many hour trips and $180 bills I have had to fork over to get them replaced before I finally gave up and said to my older son “if you can’t be responsible With them you can’t have them.” if that sounds mean please understand he is hearing enough, at this point, to make it and he has a special pair just for school that is hooked up to an fm system.

I try to sit still until I look over and see a mess and clean it. Then i look outside at our less than perfect landscaping and go out and try to mow the lawn as best i can in between door alarms going off and frantic checks to make sure my son hasn’t run away again. In my quiet moments i sit staring out the window at the neighbor across the street calmly washing his brand new truck and as I turn my attention to  my Tricolor thirteen year old car that has made it through about 3 accidents at this point that weren’t my fault (no really they weren’t I have reports to prove it!) and I cant help but think what a metaphorical picture of my life that car is. Ziptied bumpers and taped headlights but still running like a champ. Only I know that underneath that fender its strength is compromised by the bent frame. That the zip tie is there because the metal is ripped and wont hold a bolt. Who knows what it will do in the next accident… lord knows it wont be that strong… and if I don’t change something soon neither will I.

I laugh with my friends about silly things that happen through the day because if I dont spin it in some way to make it funny I cant cope with it. Humor has become my mechanism for survival.

The other day as i sat in the waiting room with my son with autism i knew everyone was looking and staring. I noticed his pants were on backwards and i knew the couple across from me was watching with interest (no judgment it was not a condescending look) and i just said knowing they could hear  “oh buddy your pants are on backwards” i heard the man chuckle and i just looked up and said “well, he dressed himself and Im proud. Now a days I pick my battles” and the couple smiled warmly and the man said “sounds good to me”. Of course this was before the meltdown down the hallway towards the room where i was to get my blood taken that left all the nurses just standing and staring as I wrestled him into the room hoping and praying he would sit still long enough just for my blood to be taken… Thank God he did and after all was done he sat staring at my bandaid and said “band aid” and the nurse gave him a sticker that he immediately put in his mouth and ate. I just smiled as the nurse looked at me with a look of both perplexity and compassion. I took in her look and walked out saying “good job buddy” as everyone stared at our backs in silence as we exited and the door closed behind us leaving a wave of “i feel so bad for them” thoughts in our wake.

That’s a day in the life. That’s how it always goes. sweaty palms. sweat soaked shirts from fear that sometimes comes out of no where. A psychologist on first glance would probably say I have generalized anxiety disorder and hand me some form of a benzodiazopine like ativan or a xanax if they are old school but truth is the anxieties I have are real. They are not unwarranted. He will run. He WILL eat things he shouldn’t. He WILL trust people he shouldn’t. He WONT tell me if he is being abused he wouldn’t even know what abuse looks like. He WILL run right out into a parking lot with out a care. He WILL get on the roof, hes done it. He WILL touch a hot stove, hes done it. And that’s what people on the outside don’t get. The constant fear and anxiety. The constant worry about safety that never subsides. School does not give me a break, most days it gives me more worry. Then there’s therapy and the constant questioning of whether or not I am doing the right thing. The “what if” questions as you watch the therapist pressing him as he screams and bites them. “What if they are causing this behavior? What if he does hate this? What if this is more harm than good?”

Special needs parenting is torturous sometimes. It’s a true lesson in endurance. Its a lesson in what is truly important and ya know right now pants put on the right way is not important to me. Its a test of mental and emotional endurance. Its ups and downs and tears near bathtubs when you are going apart from the ABA plan. Its three different IEPs every year. Its an act of love. That’s the only thing that gets me up in the morning. Its knowing that I am not in this alone. There are so many out there living this life and finding Joy in it. A joy that most days I can find. But today, Today is my “my life is special but I’m crashing” day.

 

 

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.

Faith: Disability and the Church

we are sitting in the empty sensory room at church with only the dim lights lit. I am listening to some of my favorite christian songs to help to calm myself after a long week of battles. He is sitting across from me chewing on his finger and scrolling his iPad with a stack of 7 Veggie tail VHS tapes and I cant help but love the silence. One moment of safety from the world. I cant help but to be thankful for even just this one room. However isolated it must be sometimes isolation is necessairy for us to remember who we are.

I remember when he couldn’t speak and the questions ran through my mind constantly, “would he ever speak?”, Would I ever connect with my son? Will it always be this painful?. I remember when this room was made. I remember who made it. I remember why it was made. It was made for us and all those that would come after us. It would be staffed with those that loved us. By another mom in our situation. Its crazy when I think back to life before. Back before the therapies began. Back when I was just realizing that something was different… off… I never thought this could be.

Him right across from me watching Veggie tails, speech device to my right and his beautiful, calm face across from mine while holding my hand. He can talk now. He can answer most of my quesitons. He can tell me what he needs. He can blow me kisses. Its funny how when you shut out the world and look back you can remember the faithfulness of God. You can see his hand on you and how he has answered your prayers all along and really You were just too busy to see his work.

It’s so easy to see the hard. Its so easy to see the struggle. Its so easy to be angry and forget to be thankful. I get it. I fall to this struggle on the daily. If I’m honest one of my greatest struggles is with anger. The questions I ask, if I am honest, are not questions I should be asking. I need to stop asking why. I need to start holding all of my negative thoughts captive and matching every angry question with one blessing my situation has brought me  because there are many.

Life in my world always seems so out of control and the more I try to control it the less control I find that I have. If my sons diagnosis should have taught me one thing its that no matter how hard we try we control nothing. If we are looking for control within ourselves we are going to be exhausted, angry, fumbling chasing the wind for one reason and one reason alone, it is not for us to control.

It is not me that brought my son this far. It is not even the therapists really. It is not in the hands of people. The war with autism is less physical than it is spiritual. It is a test of endurance not a sprint. Nothing comes by chance. There were a lot of times that I lost trust. I lost hope. It did not end well. I had to fall to find that getting back up was the true test. I had fallen due to lack of faith. Lack of hope. Exhaustion. Feelings of loss of control. I fell, I fell far but I got back up to run the race and each day I am being refined in that race.

The spiritual fight when you care caring for a child with autism is harder than I could even begin to explain. It goes far beyond the questions of why? It extends to things like not being able to attend church meaning you lose that fellowship, the accountability, you feel outcasted even if you arent. It means empty rooms alone while the sermon is absorbed by the congregation in worship. It means missed bible studies and community groups. the battle with autism is very much different than that of a physical illness.  A lot of times within the church there are meal trains organized to help out families (which is a wonderful thing) but I am sure pretty much anyone caregiving any type of chronic illness whether physical or psychological can attest that our doors remain closed and the same rotation of meals that render the most leftovers adorn our tables.

Church can often be a place of pain when you see the children that were once in your childs nursery class up singing with the children and your child is not on stage with them. You sit in the pews watching children being baptized and you wonder in the back of your mind if your child will ever understand enough to stand in that pool with the pastor.

If you are like me, you can see how it it is easy to just one day start avoiding the pain until one day, you realize you have not been in church for over a year. Your bible is closed and dusty and you stand there watching your son who is 8 years old, back in diapers sitting in silence. You realize that when a christian song that you used to love comes on the radio you flip the station without a thought and continue driving in the wrong direction both metaphorically and spiritually.

I dont know what it is about just being in the church building that is so calming. The bible teaches that the church is not the building its actually the collective of all of Gods chosen. I guess what I am doing in this is writing a call out to churches. There is an entire group of Gods chose that are lost and is up to us to find them. I am one of them. Like that casting crowns song

But if we are the body

Why aren’t His arms reaching?

Why aren’t His hands healing?

Why aren’t His words teaching?

And if we are the body

Why aren’t His feet going?

Why is His love not showing them there is a way?

It is time that this becomes a discussion in every congregation. We are losing many. Many who have ceased praying in the battle they are facing. We are turning our eyes inadvertantly because we are afraid to say or do the wrong things when really the only wrong thing to do is not show Christs love to those that are suffering.

 

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.

 

 

Autism and the Holidays

Tonight as we walked in the door I tried to pull up his pants so no one would see the pull up he was wearing. I had spent the better part of the day cutting his hair (which is no easy feat) and cooking the cheese potatoes as I alternated between the basement to make sure he was still clean and the oven to make sure the potatoes were not over cooking. I put on my jeans, my stylish boots and straightened my hair. We loaded up our three children and our contributions to the meal and hit the road to our families house. Inside, I tried to talk myself out of thinking through all of the possible outcomes of this meal.  I noted that we had left all technology at home and this would be a technology free experience. I thought what if he has a messy accident while we are there and I have to change him? What if he steals food off everyones plates as he always does? What if he turns off the football repeatedly? what if _______??????…..

I walked in and as everyone said their hellos and hugged my eyes were scouring the place for anything that might hinder our success. I took note of the table and the number of chairs that circled it. I began counting the number of people in attendance noting immediately that this table was going to be tight and that was going to be an issue. As the food began to be set on the table I knew right off that ham on the table was not going to survive until dinner was to be served. I did everything I could as he circled the table. It eventually came down to me sitting in the doorway of the kitchen and living room to keep him away from the half set table until I gave up. I walked into the kitchen and opened the ham and starting cutting off pieces for him as the rest of the women worked in the kitchen to finish preparing the meal. I hoped I could feed him before the table was filled wtih all the food and the guests.  That would be my only hope for any real connection with the adults in the room.

Finally, as dinner was finished being set we all sat down aiden to my right and sabrina (my 5 year old) to his left). It started almost immediately, he began stealing the ham off her plate, then mine, then he was trying to get up, he kept trying to pick the oranges out of the fruit Jello mixture before him. I noted one of the guests getting increasingly upset out of the corner of my eye but I was doing everything i could. FInally i started sending all of his favorite foods down the table after filling his bowl with all of the things i knew he would go after. At this point I was standing, doing anything I could to keep him at the table with us while protecting the rest of the food. I could feel the anxiety setting in as i continued blocking his hand and saying, “No Aiden, eat off your plate” as he reached to my plate and stole more ham from my yet untouched plate even though he still had a helping on his plate but I didn’t care this was hard for him and I wanted to help him through it. Again, he reached over to grab another orange and that’s when it happened, another guest at the table slapped his hand away (not hard but still) and that’s when it happened. I saw Aiden sink in his chair as he began to slap his hand. I could see the hurt look in his eye. I felt the anger building up in me. I wanted so badly to say something but I just leaned to Aiden and placed my forehead on his and said, “You are a good boy, I know this is hard for you. You are doing a great job. Don’t hit yourself” and kissed him.

After a few moments I saw his face gradually lighten and he went back to himself. I just sat silenced just picking at my plate. My soul was so downcast within me. I kept begging in my mind, “cant you see that this is hard for him? Cant you see that he is trying to fit in here? Can’t you see that he doesn’t understand? Can’t you bend for him just as much as he is bending for you? Can’t you just show love?” My heart was bursting. Finally, after having enough dinner to satisfy his hunger Aiden got up from the table and said, “couch”. “You can go to the couch baby go ahead”. Aiden got up and entered the living room where the tv was playing and I felt the anxiety begin to pass as I began  to join the conversation around me until I saw it out of the corner of my eye. Another guest was growing increasingly annoyed that Aiden was changing the channel on the Television as he always does. Me personally, I didn’t even realize that the television was even on. I couldn’t see it from my angle and from what I was experiencing everyone was engaged in conversation until, that is, I heard “AIDEN, STOP CHANGING THE CHANNEL ON THE TV!!” I just looked at my husband and he looked at me as the host of the party said, “you shouldn’t even be watching tv anyway when you are at the table”. At this the guest went silent and that’s when I gave up. Still hungry I walked away from my plate and went in with Aiden and cuddled with him on the couch.

After dinner and conversation ended everyone began to filter into the living room where aiden and I had been sitting and I would just interject here and there as I cuddled my son often reaffirming that he, “is a good boy” and that he was “doing a great job”.

We arrived home and as he disappeared into the basement to play on our PS4 I sat in the living room with my other two children feeling sad. I felt sad for Aiden, I thought about how hard he works everyday and still its not enough. I kept seeing that look on his face and him hitting himself and wondered if that guest even noticed what his reaction caused? Was he even aware of the pain both Aiden and I had to push through to get through the rest of the meal? Was the football game really more important than helping a boy through a day? Did anyone see how hard I was working to maintain his behavior for their comfort not ours?

My friends we need to do better. We need to see past ourselves and understand that our children with challenges are doing the best that they can. There is so much more going on than what is seen on the outside. If you find yourself getting annoyed, just stop and ask yourself how their parents are feeling. Just stop and know that we are all doing the best that we can. Just stop and know that this child is struggling. This child doesn’t understand. They need your grace. They need your kindness. Please remember that your momentary discomfort is our everyday. Please know that your impulsive reactions are affecting our children in ways that you may not even know. Please help us just by being kind and if you can’t be kind please just ignore us but don’t react in anger or frustration. Please know We are doing the best that we can and know that just getting him to the table was a huge step that took hours and hours of therapy. If he touches your food and you dont like it, give him the food and build another plate. no harm done. no broken hearts.  No hitting himself. No look of defeat on his face that I have to relive as it sticks in my brain longer than you know.

The Concurrency of Regression and Progression of Skills In Autism: Just give it time

I have never been good at this sort of thing. the basic ebb and flow of life. But ever since that day when i realized I had gradually lost my son to the darkness of autism my ability to adapt has declined. Every loss of a skill, however small, sends me into a state of panic. The past few months have had me in a constant state of panic as he began having urinary accidents that he did not have before. I would clean his clothes crying asking inside how far the regression would go this time. Is this going to be permanent or would there be some miracle that would take this plight away from us?

I began to obsess in my my mind. What changed? Was he upset about something? What did I do the first time to get him potty trained? and of course the never ending quesiton of What did I do wrong? What am I doing wrong? What am I missing? Is he sick?

One morning about a month ago the anxiety was so bad and the accidents just kept coming. Load after load of laundry. Clothing, bedding, two thrown out couches, a fight with our therapists about the issue and I didn’t know what else to do. Desperate for answers and physically shaking in fear and anxiety I called my friend and said, “that’s it, I’m taking him to ER can you ride with me? I don’t want to go to Detroit alone”. “Ill be right there” she said. As I waited for her to arrive at my home after taking her kids to school I packed up the “Autism to go” bag. I packed his portable dvd player. All his favorite dvds. all his paperwork, his headphones, doritos (in the blue bag) an Ipad, my Iphone and a charger for back up. I wanted answers. I needed answers. I was empty and out of interventions. Nothing in his immediate environment had changed, his schedule had not changed, his therapy had not changed and I was standing there empty with two less couches, therapists breathing down my neck and and another empty bottle of laundry detergent.

The doctors found nothing. Thankfully. But after a day in er with blood work, kidney ultrasounds and countless tests the young doctor gave us the good news with a smile on his face that “nothing is physically wrong here. My work here is done” I looked at him silent for a moment knowing I should be happy about that but my mind only raced more. “Well, this is where my work begins then” was the only way I knew to respond. Noting the look in his eye I could tell the look of concern in his face for me breaking that doctor code of coldness as he said, “Good luck to you” and pivoted out of the room and to the nursing desk to collect another chart.

Since going home that day I have tried everything. I took away technology. I kept the house quieter. I cut down on therapy (not wholly by choice but that’s been covered).  But the laundry just kept coming and every effort I had taken was in vain. I took him to the bathroom every 20 minutes for over three weeks. but he just kept backsliding and began to have accidents at school too. Three calls from the school to come and bring him more clothes and I had to break down and begin purchasing Pull ups once again fearing that he would get even more lazy but I had no choice.  And what has made this whole escapade even more anxiety provoking is that in every other part of his therapy and life skills he has been progressing forward so I found myself trying to decide what was more important and that’s tough when everything is so important to his development.

As I began to cycle from anxious to angry and every emotion in between I began to take a step back. My emotions were all over the board. Some days I would give up and let him into the media room to play with the ps4 and just clean him as I found him wet and others I would be 1:1 with him for 24 hours straight. Yeah, I know the inconsistency would drive any BCBA nuts but then, I am not his therapist, I am his mom and the emotions behind this was breaking me. Somedays I could separate to get the therapy done and other days I would stand there just starting blankly out the window as my coffee got cold still sitting in the Keurig.

I was confused as he would play with me in ways that he hadn’t before. He was finally seeking me out. My mom said that he had begun asking for me when she babysat. He began asking out of the blue  “I gana go play hockey… WES?!’ he was talking more and clearer and even learned the National anthem but despite all of this progression he was wetting himself over and over through the day and night. Afraid to change anything but afraid to keep things the same I stood stagnated. And that stagnation made me feel guilty, like I should be doing more but what was that more? I was in agony. Until, I decided there was nothing I could do beyond what I had already done. So, I left him to himself to figure this out on his own in hopes that time would fix the issue.

Three days, Four days, Five days passed and a new pack of pull ups later I sat there contented at the thought of leaving the fight for time to decide. Then, yesterday, no accidents. Then, last night as I got into my car for hockey i reminded my husband to put the pull up on Aiden before bed and closed the door for a small break with some friends and some hockey which has always been my hour escape for the week. Not thinking much of it i got home showered and went to bed. I awoke this morning to him stirring bright and early at six am and rolled over uttering “did you put a pull up on Aiden last night?” “oh, I forgot” David said. Frustrated I said “ugh, here we go another load of bedding and a wet kid”. I rolled out of bed and touched Aiden’s pants and wouldn’t you know… they were dry. I ran over to his bed… Dry… what?!

Its now three thirty pm and he has been accident free for more than 30 hours. I’m still holding my breath. I told my mom “this is the craziest action movie I have ever been privy to” as I sit cautiously optimistic. Has time really cured the issue? Maybe my fellow autism mommas were right that when a child with autism is about to progress they actually regress first. I’m still holding my breath that this saga is over but I am starting to see a light at the end of the tunnel. and not only are we exiting this nightmare of a regression with some new skills but I am walking away from this experience with a new perspective that sometimes not everything has to be a fight. Sometimes, I need to step back and let the process run its course. I need to let him figure things out on his own. Just like everyone else sometimes he needs to take a few steps back to grow five steps forward.

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.