I woke up today uninspired. I rolled over looked at my phone on this mid summer day realizing I had only 15 minutes to get my special needs son on that bus. I got up slowly threw on some shorts to accompany my husbands large t shirt I had slept in and walked in his room to find him fast asleep. I rolled him over only to find he had peed the bed and grumbled under my breath “he never seems to wet the bed unless we are pressed for time”. I dashed into the bathroom and let the water run until it finally turned warm and wet a wash rag and began wiping him down as best I could in the ten minutes I had to get him out the door. As the bus arrived I followed our same routine “Aiden, bus is here can I have a kiss?” As he leans over and sets his forehead on my lips my heart skips a beat just knowing how special his “kisses” are and I just stood there and watched him flapping his arms and yelling the whole way from the front door down the driveway and onto that big full sized bus that only carries about five kids on a good day.
As I walked slowly up the stairs I heard my husband rummaging about as he got ready for work the shower was on as I rounded the corner into our room and he was quickly laying his clothes out asking where his “gray pants” were. I slowly and silently walked into our small walk in closet and began looking through his work clothes that hang in their own little corner of our closet knowing I had put all the laundry away the day prior. “Oh, I found them” he said as he disappeared into the bathroom slamming the door behind him. He never was the most gentle creature when it came to closing doors or cabinets. Metaphorically, I thought it appropriate.
I plopped myself back into bed and organized the blanket just right to make me feel all tucked in and secure with a pillow between my legs so my knees wouldn’t hurt and grabbed my phone where I was met with an all too familiar text from my sons therapist, “I will be there from 1-4 today is that okay?” it read. I didn’t immediately text her back. the feeling of urgency to reply to these texts left months ago. Sometimes, this whole Autism ABA therapy gig is just too much and it takes me time to orient myself to therapeutic interaction.
It has been on my head a lot. You know, some days I just cant help but feel the loss in our life. The vacations we can’t take, the movies we can’t watch together because he will change the channel or cast some obscure YouTube video in the middle of our Netflix stream, the play-dates we just cant make, the phone calls we don’t receive, the sports we cant partake in and sometimes, yes sometimes the loss of mere personal space. I went to bed last night asking myself “if I could be completely honest with my sons therapist(s) what would I say”. I fell asleep in mid cogitation of this and the last thing I could remember thinking was “I’m tired”.
I guess that would be a great place to start. So here goes. If I could write a letter to my sons therapist here is what it would say:
Why hello there its me. remember me? You may see me as mean sometimes, you may think that I can be somewhat of a pain. But if I’m honest. I’m tired. For three years I have had therapists in my house for thirty hours a week and somedays I just want you all to go away. Its nothing you did. I like you as a person but this bra is really uncomfortable and sometimes, when I’m home, I just want to take it off through the arm hole of my tee shirt and leave it on the floor.
I want my home back. I’m tired of it being a place of employment and me being the manager. I want to be able to throw my dirty laundry down the stairs and let it lie there until I have all my laundry together but i cant, because that is his therapy space. I want to be be able to take a shower without having to let someone know first. and some mornings I want to sleep in past eight thirty am while my children watch cartoons in the next room without being interrupted for parent training or to help in some DTT (Discreet time trial) probe.
I’m jealous of you. in the evening after ten hours straight of ABA therapy as you walk out the door and get into your car you get a break. You get to go home and sit there without a worry or expectation. You can sit back with a beverage and know that you “put in your hours”. Please remember when you come back tomorrow that my time clock doesn’t exist. I’m not getting paid. on the contrary, I’m losing resources with every hour that passes as you are here. You see, money is tight because I cannot work much more than two shifts a week if I’m lucky. And my marriage is strained because my husband is working hard to keep you here. my friendships are few because I can’t get out and when I do get out there is no longer a connection. My friends now are you. My friends now are fellow autism moms i met through a local support group. I live, breath, speak and cry over autism now.
I used to be cool like you. I used to go out and wear cool leggings and have blue streaks in my hair. I used to smile and have that sparkle in my eye that you adorn everyday as you start out your careers but that’s gone now. The sparkle has been replaced by held back tears and mere exhaustion. and when I used to be on my phone all the time it was to share funny memes or to talk to a friend about the latest “dream boat” we both were crushing on but now, when you see me on my phone texting or calling I’m usually talking to an insurance company or even to the head of your clinic about something pertaining to my sons care.
You forget about us. the parents and the siblings. I get it, you aren’t paid to be here helping us. Our wellbeing doesn’t reflect in the data that you turn into the insurance company for reimbursement. That part wasn’t taught in the textbooks but I beg of you to be gentile and forgiving. Please don’t get upset with my daughter for “wanting to be an ABA girl” just like you and getting in the way sometimes. She looks up to you. and please, don’t get angry when I have more children over for my other son and they are loud while playing a video game. This is the only way i know of to get him interaction with other children. and please be gentile with my husband when he gets upset about a cancelled session or a perceived lack of progress he is spending every moment at work looking at our bank accounts deplete as he works more and more. and please be gentile with me as i watch my son struggle and I know that to intervene is only to hinder his progress. please be gentile with me as I step into a roll I never intended to fill.
I know that to send this letter or even to share this would be unprofessional however i believe that this is a part of the process that so many clinicians seem to forget. As they send us on our way with a diagnosis and a long list of recommended therapies there are often the forgotten links in all of this. There is a lapse in care. There is a lapse in understanding. there is a lapse in humanity as all the acronyms are thrown about as if to establish a greater disjunct between disorder and child and clinician and caregiver. This disjunct needs to end if we expect therapy to generalize. You cant generalize skills if you are teaching them in a clinical way. The world is not a clinic. It is a place of relationships, emotions, good days and bad days and if us parents don’t speak up to these realities we will continue walking away from great therapists due to a lack of understanding. There needs to be an avenue for open communication and that includes a check in with the parents to see how the rest of the family is fairing. It sometimes requires sitting down with the siblings and talking with them to see where they may be struggling or what they wish they could do with their affected sibling and helping to make that happen.
The world seems cold to me now. As i look at the pad locks on the fridge, the alarms on the doors, the sensory swing in his bed room and the toilet paper we have to hide because he will eat it. I cant help but wonder what the therapist is thinking when they catch me sitting alone in my living room staring blankly at my bookshelf which is filled with my old psychology text books and books filled with clinical solutions to my sons sensory issues that really don’t work. Do they see the loss? Do they see the emotional exhaustion or all the worry? do they see all the things that i see at work on the inpatient unit running though my head knowing that this could someday be my sons future? I fear that they will never know. why? because they dont ask. they say that this is beyond their scope. But is it really? Someone has to run the ship. and if the ships captain goes down so does the crew and thats a fact. So maybe its time to stand up and just say it.