Slipped away

I dont know why i keep thinking about that day. That day you slipped away. I remember it so clearly as the doctor said the word “Severe”. I remember leaning forward as my mom sat back and gasped in that that small dark room. Everyone waiting expectantly for me to cry but I didn’t. I pressed in as my heart raced “so where do we go from here?” was all I could say. In some strange way you were never you after that even though all that had changed was a word for all we had been apperceiving.

I remember driving home from the place that used to give me so much freedom and leaving it right there in that doctors office on liberty street. The ride home was silent as I held my hand out the window and let the wind calm me. It was sunny. Not a word was spoken between us as you stared out the window watching the clouds pass as you always did. But this time something was different. It wasn’t just you that was lost. It was all of us.

Now,  I knew you were gone. Lost in a place that I could not bring you back. I had no clue how different life would be. Nothing looked the same. It was like parents entering a hospital to have their first child and walking out parents with a whole new purpose only this purpose would be one of survival. It would test every tenacious belief I had ever held about about the world. Excitement would be replaced with fear. Wonder would be replaced by isolation. Dreams would be replaced with denials. Sports would be replaced with therapies. Date nights with my husband would be replaced with nights sitting at a restaurant filled with despondency.

The day you slipped away and your words faded into silence was the day that my whole world changed. IT was the day that I began throwing away your baby pictures because I couldn’t look at the present in your eyes. Now, I look at you and see empty. nothing is the same. Its like you were stolen. Like our lives were stolen.

You used to run and play and answer when I called your name. You used to call me mommy and say “ight” for light. You used to like the light, but now we eat in darkness because it hurts your eyes. People tell me to accept the life I have to find happiness and I just cant. You were stolen from me. And I don’t know how to find you. No therapy can replace what was taken.

I have one video of you playing, talking and laughing at a dump truck toy. Its the only one I have left. I can’t bare to let it go because it reminds me of a better time. When you were just a boy and I was just your mom.

I remember this one time looking in a mirror and you smiling at yourself as I giggled in the background. You heard a firetruck on the tv and you pointed to it and said “firetruck”. Today a firetruck went down the street with its siren on and you didn’t blink. It didn’t exist in your world and I just stood in your doorway empty and walked away.

I keep asking “why?” “Why us? Why you?” they tell me to stop asking… it does no good. It wont bring you back that those are answers only for God but dont we all wonder why this and why that? Isn’t that what leads us to faith? “why are we here?” read the bible. “Why is that rainbow in the sky?” its all existential in nature so why is my question so abhorrent to so many? Is it because I am expected to just accept it?

“I don’t know how you do it?” they say, “I don’t want to do it… I have to. I don’t want to watch my child struggle through a day at school but I have to. I don’t want to sit on the sidelines spending all my money on therapies as I wish I could be spending that time and money on sports?… I don’t want to watch him get farther and farther behind… but that’s my reality… There is no chance of extradition from any of it. That is my reality”

I needed milk today. Simple a thing I guess. But I sat at the foot of my bed in a state of consternation knowing you would assuredly end up at the end of an aisle in a fit if i were to take you to the market. Your 11 year old body flailing as my heart would pound and my face would grow red. I pictured it in my head and decided to warm up pancakes instead.

Quarentine has become our present state. Protecting the world from our realities. You aren’t the cute autism our society has grown to enjoy in all its humor. People look at you in fear as your arms flap and you scream out but not me. I don’t fear it. I fear them. You are my normal. My entire life has been anomalous since that first day you slipped away now, its the normal I fear. I suppose you brought me to a place where its the normal thats scary because there is no longer a place for us there. I sit in silence in the stands silenced by the light conversation.

I can no longer reach the world where a won game is reason for lost sleep. I no longer care about who said what about whom… Thats lost on me. I try so hard at normal and remain sitting in silence staring at the clock. I have reached the place in life where what others think is huge seems so minuscule to me and I find myself tilting my head to the side wishing I could hand them my soul for just one moment so they could feel how light the trial they face in the scheme of life. I don’t mean this in any derrogatory way. I wish it only to make others lives seem lighter. Its that adage if you only knew how hard it really can be for some people. I am sure there are others that look at me the same.

You don’t talk the same. You, don’t laugh the same. You don’t love the same. You, slipped away. But then, you do talk.. scripted, calculated, apraxic, slurred all while compulsively repeating the same lines from obscure clinique commercials. I smile and repeat your catch phrase for some sort of connection. you smile, flapping your arms and run away satisified and me, I sit, empty missing You.

The day you slipped away, I knew it would never be the same and it hasn’t been since.

 

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.

 

 

The Undesired Road Often Leads Home

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

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

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

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

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

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

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

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

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

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

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

 

Autism-There is beauty in the Struggle

Tonight as I stripped the urine soaked pants off my ten year old boy, bathed him as he sat crouched in the shower as it hit his back, dried him and placed a clean pull up on him i couldnt help but think about how beautiful he is. It’s amazing how sometimes in the depths of the struggle when it seems that all is lost my heart swells with pride and thankfulness that he is in my mine.

Its hard to describe really the beauty that I get to experience everyday. The innocence in his mischevious behaviors. Like how he cuddles up with the women at the park, makes friends with them then steals their phone. Or how when you think there is no one in that quiet shell he does something that blows you away like brushing away a tear when I cry.

Yesterday, as I sat in the chair watching him work in speech therapy after a morning of ABA and more ABA to come in the afternoon I couldn’t help but marvel at the boy he has become. I can’t even begin to imagine what it’s like to be in his head. With people constantly redirecting, judging, shaping and wanting him to do things he does not want to do one would think he would become angry, cold, distant but not this boy. This boy cuddles, plays and is so funny. He is the hardest worker that I know.  He amazes me more everyday and I pray that one day I can be half the person he is.

I think the hardest part of all the therapies is that sometimes I get jealous. I get Jealous that the therapists seem to see him more than I do. Sometimes it feels like I am just the taxi cab and the nanny that keeps things going and they are the ones that are putting in the “real” work and getting the hugs. But then, just when it all seems as if the emotions are going to come crashing in he says something that they cant understand but I can and for just a moment I feel like I have him to myself once again if even just for a moment.

Tonight before his shower Aiden took my hand and placed it in his mouth to show me had a loose tooth. “oh, Aiden is that bothering you?” “WES” he said as he shook his head up and down (a skill that took him three weeks to learn). “Honey, that will come out on its own in a few days is that okay?” “no” he said as he pushed my hand out of his mouth and yelled jumping up and down in delight obviously having moved onto another thought without finishing our conversation. I just stood there smiling because he “told” me that his tooth was bothering him. I knew, no words required.

The fact that he is in pull ups at ten doesn’t bother me. The urine soaked clothes don’t much bother me anymore. Maybe it has become normal. Maybe I have just accepted the reality for what it is. Only time well tell and I’m sure I will have my wavering moments again but this isn’t one of them. Right now I just stand in awe, silenced by this thing they call autism. I love these nights of no therapy because I can let him just roam. I get to watch him choose what HE wants to do and those are the moments that I love to just stand back and watch him. I try to see what he sees. I look at the DVD cases with him and try to figure out the method to his DVD choices (I still have no clue). I love to watch him navigate technology and type difficult words without any spelling errors. It gives me that moment of pride in knowing he is far beyond his peers in this one area.

I no longer look at and study his evaluations denoting his deficits or his idiosyncratic behaviors. I look at him and where his strengths lie. As those evaluations sit in laminated pages in a 2 inch binder on my bookshelf collecting dust my amazement of him is refined everyday that his feet hit the floor knowing that a long day of therapy and uncertainty await him.

As the therapist pulls out another puzzle, knowing he is going to scream and bite his hand in opposition, I sit there staring at the wall knowing that I can’t inverveine. There is a level of restraint that parents of special needs children need to practice. We cant act on our natural impulses that come naturally  and there have been days that I have stood outside with my hands over my ears crying repeating to myself through the tears, “through the tears and the tantrum there’s progress….. through the tears and the tantrum there’s progress” until I believe it (at least somewhat) and collect myself before rejoining the therapy once again. I have learned it’s sometimes best to walk away (when you trust the therapist has his best interest in mind and is not being abusive of course) when it becomes too much because children with autism pick up on your weaknesses and it just adds to the heightened stress.

That’s what amazes me. There are times it feels as if he is just a silent tenant in our house that kind of just co-habitate but when it comes down to it and someone is sad, or someone is sick he always seems to show up. I don’t know how he does it. The idea that children with autism don’t have empathy is hogwash. I think they have it more than most people they just don’t always expresses it in the ways we have been conditioned to receive it and sometimes I think that its that we just move way too fast and forget to look at the love in the details. We see the big picture but the truth is in the details.

I have come to accept that despite all the prayers I have prayed autism will always be a part of our lives. I have come to revel in the idiosyncratic lifestyle that we will always lead. I have come to be thankful that in the struggle I have come to peace with it. Not to say I won’t stop trying to get him to be the best he can be but because of this acceptance the desperation is gone. The anxiety is gone. Come what may, I am thankful. Thankful because I get to take this journey. A journey of roads with uncertain destinations. A road that shifts west when you planned to travel north but the scenery can’t be beat. It cant be described by pictures or words. Its something only we get to truly experience and for that I am thankful. Though its scary sometimes and people can be hurtful in their lack of understanding there are those moments that bring me back and those people that restore my hope in the world. So today I am thankful for the pull up changes and his idiosyncratic ways because I get to close my eyes at night knowing we both did our best and we did it in love.

 

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.