Today I took a shower and actually enjoyed it. I stood there letting the water run through my short hair and down my bald spots on my scalp and focused on the clear water running down my back void of any contaminants. The empty parts didn’t bother me so much for the first time because for the first time in four months I was no longer losing. You see, for the last four months my hair has been falling out. We’re not talking hair thinning with age falling out we are talking clumps of hair in hair brushes and clogged drains falling out. I remember the first time when I realized what was happening was not normal. I had spent the night at my girlfriends apartment, took a shower and as I washed my hair I could see the hair falling. I would run my fingers though my hair with the conditioner and pull out handfulls of hair. By the time the shower was done I yelled down the hallway wrapped in a towel still dripping just staring at a tub full of hair feeling horrified. That’s when I knew I needed help.What would transpire would be a trip to the dermatologist who would run a multitude of tests which would render no real answers. “Normal” was the answer in every result. Upon entering his office the second time I sat there just looking at him as if he would have the magic pill that would make it stop. He looked at me almost knowing what was about to happen. He asked if I was under stress at which I just looked at him and said “Well, Covid, quarantine, kids out of school, a special needs child who is receiving no help, on lay off from work…” he stopped me he said, “stress”. Diagnosis Stress. I sat there as he looked at me with a gentleness in his eyes that I had needed so badly and just began to cry. I remember looking down as I tried to compose myself and seeing hair lying lifeless on my black yoga pants as if my lap was the safest place for it to land. The medical assistant stood there quiet, holding my chart frozen not sure of what to do. “I am going to offer you the worst advice ever” he said “you need to just chill out”. He looked at me with a half grin and we both laughed knowing the absurdity of that statement. He would at that point prescribed me a lotion that I would apply on all my bald and thinning spots and I would return two weeks later.That two weeks was the longest two weeks of my life. As I counted down the days to my next appointment The hair continued to fall and I began to skip more and more time between hair washes because the feeling of clumps of hair running down my legs was as bad as seaweed touching your leg when you know its coming and there is no way to avoid it. Whenever I did wash my hair I would stand there sobbing as I pulled more and more out of my head with no end in sight. It was apparent that this lotion was not working. I would get dressed and come down stairs and my mom would always ask me “how did it go” as I would just look at her and reply “it just keeps coming out”. It was in this two weeks of waiting that she would come into the bathroom as I was brushing my hair and I would say “I don’t even want to touch it”. “Here, give me the brush” she said. I’ll never forget the look on her face as she pulled the brush from just one stroke of my hair and looked at what she was holding in her hands “oh, my God!” she said in horror as she set the brush down. She just looked at me horrified. “I had no clue it was so bad!”It would be in this time that I would have my first time even considering a wig. I was almost fully bald on both sides and the back was sketchy at best. I walked into that wig shop noting immediately the perfect cut of hair wrapped in a hair tie sitting in a basket just waiting to be made into a wig for someone like me. The hairdresser keen in wigs knew ahead of time that I had previously adorned black hair because my friend had told her. I was to shy to call prior to the appointment. I had no clue what to say. so we walked into the small private room and i took off my hat and looked in the big mirror before me. She picked up a long wig and placed it on my head and I just stared in silence for a moment before I began to sob. “It looks just like my hair” I said, unable to say anything else as i looked back at my friend and noticed the tears beginning in her eyes. “Let me try the blonde wig” I said jokingly “I’ve always wondered If i could pull off the barbie look”. She placed it on my head and we all began to laugh. It was then that I knew the “barbie look” would never work for me.Appointment three is when I think the Doctor really became concerned. It was apparent now that I would not be able to go into public without a wig or some sort of head covering. It was also apparent that this lotion for my scalp was not enough. He had me sit in a chair as we spoke about something random, I don’t remember what, he said “lean forward, like this, put your face in your hands”. I didn’t question him, I knew he was the best, he had helped my brother with severe eczema and had helped my mom with skin cancer. That’s when I felt the first small pinch of a needle. He kept talking as he kept the needle moving. Pinch after pinch until, I was later told, I had been given over 25 shots of steroid in my scalp. He left the room and the medical assistant started pulling another shot with a longer needle and said “this is going to go into your hip”. I looked at her. She looked at me and smiled. It was the same medical assistant from the last two visits, she had been in on this journey with me from the very moment I walked into the office who was I to say anything. We made small chit chat as I pulled the waste band of my pants down and she cleaned the area with an alcohol pad in preparation for another more potent injection of steroid. For a moment its as if the world paused and I flashed back to the days when we would inject patients in the same manner with antipsychotics when they lost control. It was ironically metaphorical really, they lost control and I was losing hair. Poke and done. I was sent on my way with a bleeding head, a sore toosh, a prescription for a medicated steroid shampoo, another appointment in three weeks and hope.After about a week of using the shampoo daily, which required me to lather it on my dry scalp, leave it on for fifteen minutes then rinse it out, I began to notice less and less hair in the drain. At first, I chalked it up to having less hair, and would tell myself not to get too excited because percentage wise was I really losing less? During the day, I was training myself with my new wig and slowly getting used to caring for it and having something foreign on my head. Sometimes, I would get brave and I would sit on the porch but the moment I saw anyone pass by I would bolt into the house to hide. I didn’t want anyone to see. I felt like I looked sick despite a clean bill of health. I continued the shampoo and would have my mom look at my bald scalp almost daily in hopes that something miraculous was happening. Everyday went like this, Medical shampoo with no fragrance, intense looks with a magnifying glass, lots of prayers that sometimes, I’ll admit, were more pleading in nature than prayerful, wigs, hats and tears. I began to look at women with long hair longingly as if they were some greater creature than I. My self confidence was waning.But, Slowly, I began to notice less and less hair in the drain and on my hands. Then, I saw what I call “baby hairs” popping up in various places and I couldn’t help but begin to get excited. I continued on. Today, appointment four, I had a different medical assistant which made me feel vulnerable in some way. She was nice enough though she called me Kristen a few times which I didn’t feel a need correct her. The other medical assistant popped her head in and said “HEY! I saw your name and I had to come see you! How are you?!” “Well, I’m still mostly bald on the sides but i have a lot coming back on top!” I said smiling as she was pulled away by other patients and responsibilities. Today, I got seventy four shots in my head and another in my other hip. As the doctor exited the room I was still sitting in the chair with my head resting in my hands posed as I was the first time I had received this treatment and I felt his hand rub my back softly yet encouragingly. He never said goodbye, he didn’t need to.Tonight I took a shower, I cheated and used cheap green apple shampoo and nothing came out. There was no hair in my hands, none ran down my legs and there was none in the drain. I stood there just letting the water run as I breathed in the cheap fragrance so deep. I stood in the mirror and picked up the big round brush my mom had used that first day she realized the extent of my issue and ran it through my hair stroke after stroke and the brush remained clean. I smiled and just kept brushing my cool wet hair that felt so good on all the places the needle had kissed my head. It had been months before I could brush my hair without fear. I tilted my head and leaned in closer to the mirror to inspect where all my hair was beginning to grow back and felt like I was starting to get my life back however slow the process. You know what they say, all the best things in life take time.What a journey this has been, Its been a journey of loss and of finding the vulnerable parts of myself that I never knew existed. I learned a lot about people and the power of friendship. I learned about adapting, change and hope. I learned about perseverance and whats really important in life. I learned a lot about what it means to embark on a personal journey that no one will ever fully understand until they are traveling it. I have another appointment in two weeks and I hope that I will be able to show them some good progress even if it isn’t anymore hair, the progress I have made in my overall outlook on it all has been exponential and what I have gained is far more than what I have lost. I hope that one day I can finish this story but for now all I can say is that in life all we have is hope and love without those things we have no solid base when things fall.
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.
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
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.
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.
I watched a movie about a year ago called Jack of the Red of Hearts and there was one scene in the movie that hit me so hard that I find appropriate to open this blog post with. In the scene there was a husband and a wife having a heated discussion about how to proceed with their autistic child’s care and the husband said something so profound that resonated with me and often runs through my mind whenever there is an, “autism disagreement” between my husband and I and here is what he said, “I don’t want to feel like we are co workers in a mental institution anymore”.
I don’t know if its because of working in the capacity that i have as an inpatient mental health technician for the past thirteen years or because sometimes it really does feel that way but this line hit me so hard that I had to pause the movie and walk away to collect myself because well, he was right. It does feel that way and not just sometimes, most of the time, And there is always this tug and pull between “he doesn’t get it” and the “why is she acting so crazy” conversations we all have had with our closest friends (come on guys you know you have had the conversation). and the expressions that i have heard in almost every conversation is generally something like this, “he is never home so he doesn’t know whats going on and he still tries to tell me what to do. he just doesn’t get it.” and on the other hand her male counterpart is thinking, “I have to work all of these hours just to keep the therapies going and i come home to a messy house and chaos! And whenever I try to help she gets upset at me and gets all crazy. I mean really what does she do all day?”
Ok Y’all, I want to lay this out on the table here. First, lets tackle the emotions in all of this, because ladies and gents, this is what motivates us to do whatever we do. Ladies first lets get this out…
Dear Husbands, we are tired, we are physically watching our children suffer, because we are home, the brunt of the housework is on us as our children continue to break things and for many of us pee on things. It is our primary responsibility to keep our children safe and to know what they are doing at every moment. We are running our kids back and forth to therapies that may be helping but then again they may not be and we are left to gauge that. During ABA there are strangers in our home during our most intimate moments with our children. As we eat with our children without you a therapist is helping to script our conversations and sits not eating as we eat in front of them. when our children misbehave they are watching how we react and when we lose our patience (as all parents do from time to time) they are standing there judging. We are not allowed break down time and when you get home, I seem distant because I’m done with people. I just want to put my sweat pants on and watch Shameless or some stupid ADULT show because my day has been filled with stress and emotions I had to suppress. I know you get upset when I go out for coffee with a friend, you may think that I have it made, or that I am “taking advantage of not working” but really, that coffee break is usually spent talking to another autism mom. That short coffee break is my saving grace, my one breath of air in my ever sinking afternoon.
Now, of course I am not male but ladies I have listened and I have thought long and hard and if I had to compose a letter to Us wives from our husbands this is how I imagine it would go…
Dear wife, I am tired. I get up every morning and head off to a job that I’m not so particulary fond of when I would much rather be home. When I am at work I am always thinking about home and wonder what is going on. I get jealous of you when you go out for coffee with a friend because I don’t get any time to go out with my friends because after being out at work for so many hours a week I feel guilty for leaving you alone again even if I don’t say it. It seems like with every bill I pay two more come in the mail and I cant seem to get us ahead financially and that makes me frustrated. When i get home to a messy house and a stressed out wife I get even more frustrated because I have tried to “fix” this and I realized that “fixing” this is not really an option. and lastly whenever I try to intervene with a behavior or to help you with something pertaining to our child’s care you tell me that, “I don’t know what I’m doing because i was not here with therapy all day so I don’t know how to do it right” and that talk makes me feel angry and like an outcast. and Last but not least, I want my wife back. Ever since autism hit you seem so distant and our times of intimacy has turned into a chore leaving me feeling like I have no place in our home beyond keeping a roof over everyone’s head. you always seem so preoccupied.
There are so many dynamics in a marriage when Autism is thrown into the mix and i think in the course of all the emotions and lost personal time there is a loss of connection. I think its important that we take note and be more forgiving of one another. Men Please note, that if the house is in the same condition as you had left it she worked her butt off to keep it that way. And women, when your husband wants to stay in bed on a Saturday until noon, maybe we should let him without getting angry because darn it he has worked hard and is sifting through emotions we cant understand. (this does not mean husbands that when you get out of bed at noon on Saturday and look at your wife managing children with her messy hair and sweat pants that you have the right to get up and starting telling her what you don’t like about any given situation because she is maintaining for you to rest when you get up thank her and ask where you can help).
Date nights are VITAL even if you don’t leave your house. Put the kids to bed order take out and some wine and talk. Talk about anything BUT autism or the kids. Talk about trips you want to take, friends you have met how things are at work or how attractive you still find one another… anything, anything BUT AUTISM. Maybe take a moment to thank one another for the work you see them putting in or ask how you can both somehow take the pressure off of one another. Because its no secret that the divorce rate in Autism families is high. Like 80% high. My husband and I almost fit into that statistic two years ago as we sat in that Detroit courtroom holding hands unsure of how to fix it and we still aren’t perfect but what got us back on the right track was taking a step back and remembering what brought us together in the first place. Because despite all the changes that Autism has brought to our lives and to us as people we are on this road together and even though we often approach our sons care from different angles we have the same goals in mind and the same intense love for our child that no other person will ever have towards him.
Therefore, we must see that what our spouses are doing whether it be staying home to run to therapies or gong to work each day every clean dish and every paid bill is a major contribution to our child’s well being and success. We musn’t continue on in this thought pattern of negativity and battling one another. Accept one another, thank one another, encourage one another be gentle with one another and last but not least love one another. You are not co workers in a mental hospital. This is not just behavior and therapy management this is Love management. When you look at it from that perspective I promise you everything will change and the chaos may not physically diminish but your soul and your home will become a much calmer place.
Imagine this… you are standing in your kitchen and the television in the living room is playing Trolls for the one millionth time on high volume, your son is in the other living room laughing with his friends as they play fortnight on the ipad and they are yelling and laughing in excitement, your special needs son is in the basement and you can hear the therapist working with him as he yells out in frustration and you know he just bit himself again, dinner is cooking on the stove and your mind is going a million miles a minute trying to remember that one kid still has homework, the other needs a bath and oh yeah don’t forget the laundry in the washer again… Your husband (your only real adult interaction of the day) isn’t home beacuse he had to work late and you know when he gets home he will be understandably exhausted so he will come in, eat and that will be the last of him. You get dinner finished and the children wont sit and your special needs child wont eat what you made so you fly through your meal scarfing down what you can so you can go make something he will eat even though the meal you made was his favorite last week. after cleaning the kitchen and doing the homework and bathing the kids you sit down on the couch starting at the tv noting you aren’t even watching it, exhausted, knowing you will get up tomorrow to the same challenges. And this is a good day.
I want to talk about something that is almost so taboo that its hardly ever discussed. I want to talk about the mental health of those who caretake those on the autism spectrum and really if we are honest any special needs individual. I want to talk about the daily struggle in our minds as we navigate the care of our children and the battles in our minds. There is a constant worry that we carry that never really goes away. There is fear, there is anger, there are the questions “why?” the sleepless nights, the moments where we ask ourselves “am i doing the right thing” knowing we will never really get that answer, there is endless laundry (especially for the almost 20% of us who will never have potty trained kids or those of us fighting that battle and somewhat winning so the hope keeps the pull ups in the cabinet despite the mess), the broken furniture, the door locks, the window locks, the fridge locks, the neighbors that aren’t quite sure what to say so they just look out of the corner of their eye when he is outside, the loneliness, the isolation, the loss of self, the constant placing of yourself last out of love, the jealousy and last but not least that never ceasing feeling of loss and desperation. And when you put all of these things together its a recipe for disaster.
I find it troubling that those of us in the autism community don’t talk about this more. I mean, we are all battling it some more than others of course but its all valid. As I travel from Facebook site to Facebook site I cant help but Laugh at the memes that other autism parents have made with funny sayings, you know like the ones that make light of the difficult times. Sure, they are great, they are funny and I often share them on my facebook to make light of the situation but when you really sit back and think about it the things that we are laughing at are the things that are really breaking us. What if I told you that our jokes are really our methods of survival and our attempt at remaining valid to the rest of the world? Need an example of what I am talking about? Observe.
Ok so yea, this is a picture that most parents would get even the ones with only typical children but what if i told you the precipiting behavior for this photo and its saying was what caused that parent to lose it earlier that afternoon? What if i told you that child had talked about nothing but that lego man for hours upon hours and the parent had spent most of of their week looking for it as their child screamed and melted down? Because honestly, that is the reality for most of us but we hide it. We hide the battle that got us to the point of this being funny.
There is a point of exhaustion that we, as special needs parents reach at various intervals and sometimes we are lucky enough to find someone at the same level as us and we connect for a while until we slip into different stages of emotion. But I think its time that we talked about all of this. Got this all out in the open and said, “Funny, not funny”. We need to stop saying we are okay when we aren’t. And most importantly the mental health system needs to step up and recognize that we CAN’T get help. We don’t have the time, economic resources or the availability. And for those of us that do seek out help we are so conditioned into the thinking that “they don’t get it, they don’t get me, my situation is so far fetched they wouldn’t believe me if I told them I found my son on the roof last night” that we either don’t share the realities or we are proven right in our assumptions.
I’m gonna be honest here and say from my experiences and interactions with other parents there is a high rate of substance abuse in the special needs community be it Alcohol, marijuana, sleeping medications and yes even pain medications you just don’t hear about it or see it because most of us don’t get opportunities to leave our house much and we cant get the mental health resources we need to deal with it effectively because lets face it, mental health professionals wont come to us and we can barely make it to the grocery store. (thank God for Grocery online ordering)
One could argue that with the advent of social media we have created a greater sense of community among those in the special community. Sure, there are autism support pages and the like however, It is rare for a parent to go on there and say, “I am struggling”. These pages are often filled with people asking for help in creating their child’s IEP or advice on how to fix a new behavior challenge but almost never do i see parents asking for help for themselves. Are we hiding behind the autism lingo or are we really that lost that we don’t realize we need help too? Are we trying to be super parents or are we just so conditioned to being told no when we ask for help that we think no one can help us?
This is something as a community we need to fix. we need to stop hiding the fact that we are sad, depressed, mad, can’t turn down that drink (that turns into a half bottle of wine) at 5 pm when everything is spinning around us, can’t sleep without that hit or cant relax without that vicodin that calms our physical nerves that are really caused by stress… and the mental health system needs to step in and say “this is a community we are failing and we need to do better. We need to create a platform that is both accessable and safe for these parents to get help”.
Caring for a special needs child is stressful, its hard, its isolating and it really needs to take a community effort to get them to be the best that they can be. But the community around us can’t help us if we keep hiding. I say, its time we started talking about it. Its time we approach our local autism supports and say “hey, by the way, there’s this thing and we need to talk about it”.
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.
I’m starting to learn a very important lesson in life that if you have the right tools for any given job then the job becomes easier and less time consuming freeing one up from both frustration, lack of time efficiency and unnecessary exhaustion. Sounds simple right? Like I should have know this before today. Common knowledge right? Well, not really.
Last week as I was trying to manipulate my big bissell vacuum up the stairs while holding the hand held wand that comes with it I couldn’t help but complain in my head, “aargh, this is so heavy! And I have to stop halfway to plug it back in! There has to be another way!” We’ll that night as i layed in bed settling in for yet another sleepless night of random thoughts I remembered this earlier conversation i had had with myself and remembered the handheld vacuum my mom had when we were growing up. I began researching on the inter and guess what I found! A Ryobi hand held vacuum that uses rechargeable batteries! Not only that but we already have said batteries and the charger as my husband uses this for his power tools. I got so excited that I woke him up and said excitedly ‘This! Look! I want this!” My husband shocked that I would ask for something like a vacuum cleaner said “okay we can look into it tomorrow”. Well let me tell you a week later and today i picked it up. I also picked up a window squeegee (like the ones that you find at the gas station for your car) and and some professional like window cleaner (you know like the one you dilute in water like the professionals use) and i flew home.
Knowing I had to go and get my son in about an hour for therapy rushed to fill the bucket with the cleaner and screwed on the squeegee head. I grabbed a plastic chair and ran out side with said items anxious with anticipation. I began washing the outside windows that for the better part of the summer were so dirty even though i had spent hours tying to get them clean. I dunked the squeegee in the solution and as i soaped the window I couldn’t help but notice how much easier this was already. Long story short twenty minutes later and all my windows were sparkling clean and I wasn’t tired or frustrated and i was ready to tackle the next task.
I unwrapped the vacuum (discarding the directions because we all know “i got this right?”). Inserted the battery and turned it on. I ran to the stairs immediately and within ten minutes the stairs were vacuumed and I still wasn’t tired. I also still had time to spare! Not only were the tasks that used to take me hours with less than acceptable results done but they had never looked better!
Now, maybe I’m a simpleton. Maybe this story is leaving you bored wondering “hey, what’s the big deal?” We’ll, here’s the big deal. The more housework i get done in less the time the more time i have to spend time with my family not to mention, I am finally figuring out how everyone else seems so calm and rested as they live in spotless houses. Maybe, its time that i stop just looking at the house of my spotless friends, maybe instead should be Asking to see inside the cleaning closet at the tools they are using.
Okay, lets get metaphorical for a moment. Let’s get deep. What life lessons can we learn from this?
First, instead of struggling with the same things you have been struggling with in life maybe it makes sense to step back and have that conversation with someone you know to be excelling at that “task”. It could be anything, like organizing, time management, emotional intelligence, child “management” etc… Because if you are still running around in circles three years from now despite fighting the battle that you see others have conquered it only makes sense to ask them their battle plan.
Second, asking for help or guidance on an issue helps to strengthen relationships which is not only good for your health but can also be a good networking tool for things that may pop up in life. Not only job opportunities but the more people in your networking circle the more connections to more tools you may possibly need in the future.
Third, If something is frustrating you or hindering you from what you desire to do, be, to see (in the case of a more clean house) stop. Just Stop. Stop fighting it and research how to get those things done. I get it, after so long of battling the same battles it sometimes takes us to brink of our anxious selves to figure it out. I’m not sure if its society that teaches us to keep battling in silence or just our internal anxieties of what others will think if we show our weaknessness, maybe its both, but my hockey coach always used to say “ignoring your weaknesses only makes them more profound, the more you use your weaknesses the more a chance you weakness can become your strength”. N
Okay so i get it. My metaphore of cleaning the house may be a bit far fetched and simple but its what i got for ya today. But today, as i look out past my overgrown bushes under my front window at my neighbors perfect landscaping I wont be looking through old water spots and dirt. My view will be perfect, and i will be rested and tomorrow, maybe ill march on over and ask to see in her shed. Maybe then I can have perfect landscaping. The grass doesn’t always have to look greener on one side sometimes if you trade in that old lawnmower for a self propelled one yours can look just as nice.
That’s todays thought of the day and I’m sticking to it! Have a great day y’all and take heart. Whatever your struggles may be sometimes its not what you are doing but the tools you are using. Don’t give up! And remember, ITS THE LITTLE THINGS THAT MAKE ALL THE DIFFERENCE!
I know that we are writing a story. I know that in every good story there are plot twists and antagonists. I know that there is going to be mystery but what if that story is constant stuggle? Is there a point in the comings and goings of characters where the story loses its vigor? As I travel my way through watching a show from season to season there are episodes that i have to push to get through because of the boredom but then it picks back up a few episodes later and i say “ahhhh so that’s where they were going with that”. Maybe that’s what life is like.
As i watch him struggle in some areas like urinary accidents that weren’t a problem a few months prior while watching him excel in other areas like communication and understanding I cant help but sit perplexed and stagnated. I want to find out what changed to make his potty accidents increase but at the same time I don’t want to change anything because of his increase of reciprocal communication. I sit in a state of constant anxiety because i cant seem to figure it out. Not to mention our therapist center we had been working with for over a year decided they could not contend with the behavioral issues at hand and have given us a thirty day window to secure services with another company (which is next to impossible after you jump through the insurance and evaluation hoops not to mention the wait lists and team formations). SO i will be left out in the open to figure all of this out on my own once again.
Yesterday after a small medical procedure I had done I awoke from anesthesia and my first words were “why wont anyone help him” as I sobbed. The nurses just stood in the room unsure of what to say knowing that i was not yet fully in the world with them. As i came to a bit more i began to apologize and as I cleared more i went silent and began joking with them something completely off topic. But as i sit back now and think about it I remember dreaming about it while i was “under”. It’s all I ever think about. Sometimes as I smile with people in conversation I cant help but realize that the smile is not really a smile at all its a cringe. It’s a pained expression hidden behind giggles and laughs.
Yesterday, after my procedure i went home and I couldn’t rest. Still sore and groggy I knew there was no rest in store. When you have a child with special needs there are no sick days. He walked through the door and I took him to the bathroom and gathered my things and ordered Chinese (knowing I couldn’t cook in my state) I drove us out to the Chinese restaurant and we walked in as he clutched my phone in his hand. I set him down at a table as he flapped and yelled happily as he watched the PBS Kids jingle for the seven millionth time and couldn’t help but see the woman waiting by the wall staring at him. I got angry. I usually don’t get angry. As I walked still a bit slunched over from the pain i paid for the food, walked over, grabbed aiden and began to lead him out the door when I heard her lean over and tell the person next to her that “he must be retarded”. Now, I realize that she is older and that is the school of thought that they held and just continued walking as the tears built up but never fell. I got us into the car put the food on the floor so it wouldn’t fall off the seat in transit and turned to aiden for the “1…2…3 give it to me” talk but he resisted giving me the phone. Knowing that David was going out of state the next day and would need the left over data for his trip i knew this was a battle i was going to have to win. So i slithered out of the drivers seat wincing with every movement and grabbed it out of his hands as he looked at me angerly.
We arrived home before my other children’s bus was set to arrive so i sat and ate and put his favorite noodles on his plate and tried to get him to sit and eat but this battle would not be had today. As he ran back and forth grabbing handfuls and dropping food as he ran i just sat there watching the mess I would have to clean later grow but i was in no condition to stop it. I was empty both physically and emotionally. I stepped into the back yard to take a breath of fresh air knowing that this would be one of the last days that the weather would be good before the snow hit. But the moment i stepped outside i looked over and saw that he had taken everything not secured to something in our second story bedroom and threw it out the window. I just sighed and began to pick things up calling Caleb (Aiden’s younger brother) to help me to pick things up as I praised him and thanked him for his help. Another scentsy warmer broken I thought to myself as I picked up the pieces defeated.
By the time my husband got home I was depleted, void of any energy and if I’m honest hope. He told me to go rest but then he was tired too. We both layed down and before i knew it he was snoring and i was angry. I got up to check on aiden and he was sitting in his sensory swing in his room with the ipad and all I saw was the puddle underneath him. I lost it. I got mad at my husband, I got mad at aiden, I got mad at Autism and I got mad at myself for not maintaining control. I began to yell at my husband “YOU KNOW I HAD SURGERY TODAY RIGHT?! RIGHT?!” And he grew on the defensive and all hell broke loose. There were hurtful words passed, there was anger hurled and uncontrolled frustrations at the whole of things.
As I put aiden to bed I couldn’t help but feel that I had failed. This seems to be the most of my feelings as of late. I feel like I’m failing everyone including myself despite my best efforts. I feel like everything is swirling all around me and nothing makes any sense. My brain feels like a puddle of mush as I try to figure out this thing called autism that really makes no sense at all.
As I grasp at straws trying to figure this out and the people I had put in place to help us continue to bail as things get harder and harder I cant help but wonder when I will have to say I can’t do this anymore. IF even the professionals who are only here six hours a week are bailing who am I to think that I can do it 24/7? But then I think about the whole of things and what waits for him out there. If I give up then he has NO ONE. If I give up then what am I teaching my other children? I feel like giving up isnt an option. So then, how do I navigate this? How do I plan for the rest of MY life? I know I need to start with forgiving myself. I need to be more gentile with myself when I lose myself in anger or grief. Sometimes I need to let myself sit and mourn its part of it. I need to stop comparing myself to the other moms who adorn perfect makeup everyday and just be content in my yoga pants and hoodies. I need to stop striving for perfection and instead strive to be the best I can be. I need to stop hiding the fact that I’m tired. I need to stop hiding the fact that apart from my years of inpatient and my degree in psychology I have absolutely no clue what I’m doing. I do know that I’m doing my best. But the hardest part is that I am seeing that even my best isn’t good enough in this case.
Everyone tells me to “take care of yourself” or “you need time for you” truth is I don’t even know who I am anymore let alone what I would do with “free time”. I don’t even know what this world is like anymore. Autism has taken over my life in a way that cant be described. I cant make sense of anything and the darkness of people has been shown to me in a way that I cant seem to let my guard down much. I’m so angry. So disillusioned. It’s hard to strive to see the light at the end of the tunnel when it seems that everyone on our journey continues to bail when things get tough. But me, I’m still standing here right at his side. I’m watching a boy who doesn’t know he needs help and I’m trying to save him as the waves come crashing in harder and harder. And even though there are bad days and trials when this journey began I promised him and myself that I would remain steadfast in my promise to keep him home and protect him and this is still a promise I’m holding to. Even if its not always graceful this is my burden to bare and I have my moments of questioning my resolution to my promise I know deep down giving up it not an option and that is what keeps me going day after day. And this will always be Life as we know it. And that’s our story. A story based on Love that knows now bounds even when the world doesn’t understand the sacrifices made I will continue on knowing this is our story to write. Not the worlds.