How have our lives changed after our child received a diagnosis of autism? Well, things are the same, yet everything is different. How is that for an honest answer?
Our road began in December 2014 when a Speech Therapist (SLP) referred me to our county’s Early Intervention program. We knew Eddie had a speech delay & her outcome measures found his language to be in the 1st percentile for his age. She encouraged me to reach out to the County & look into applying for their services.
Did you know ANYONE could call his/her local county office for a free evaluation if you think your child might have a developmental issue? Well, I didn’t & I sure wish I had known sooner.
Luckily, the County office scheduled Eddie for a team evaluation in January 2015. This team included an Early Childhood educator, a Speech Therapist and an Occupational Therapist. Along with my reports, they found Eddie was deficient in all aspects of development for the exception of gross motor skills. Great, this meant he qualified for services & come February he could attend Early Intervention (EI). Thankfully, Derek & I were able to adjust our work schedules to get him to/from class.
The EI evaluation got me thinking; maybe we should see a developmental pediatrician. Eddie’s PCP put in a referral & scheduled us for an intake assessment in late December 2015. That’s correct- we were supposed to wait 12 months to see a developmental pediatrician. This was unacceptable as everything I knew and read about child development stated how imperative it was to have screenings & treatments completely early.
Over the next month we made several phone calls to various offices in effort to see a developmental pediatrician sooner. We found an opening at a clinic that was out of network. I pleaded with them on the phone to hold the appointment for us & we would pay out of pocket if necessary. They were fantastic to assist us in petitioning our insurance to cover 6 appointments at in-network cost & you know what-it worked.
In March, we completed 3 long sessions with our developmental pediatrician over 3 weeks & she felt confident in an autism spectrum diagnosis (ASD). Derek cried & I was bewildered. It didn’t make sense to me. I had a picture in my head of what a person with autism looked like & my son did not match my internal criteria.
April found us with an autism diagnosis & a 3 month wait list for Speech (SLP) & Occupational Therapy (OT) services. I quit 2 of my part time jobs, as I needed additional flexibility to chauffeur Eddie to/from appointments. As I began the process of telling people that Eddie was now diagnosed with autism, I fumbled explanations and dodged questions, as I was ignorant. I read, studied, joined message boards & was sucked into the vortex.
The fact that I didn’t buy the diagnosis ate at me. I saw certain aspects of ASD, but I didn’t see enough to sell me. Never in my life had I wished so badly for a crystal ball. I needed to see how it ended. I had to see if this road we were paving was the RIGHT road, the one that made the difference, the one that mattered. I couldn’t bear to think we had turned where we should have gone straight.
The summer found us continuing OT & struggling through SLP. Eddie screamed, protested & fought his way through every SLP appointment. It was a miserable 8 sessions. Summer was also when Eddie first hit me. He was in the middle of a meltdown & I got on his level to try to calm him when he hit me with a right hook so hard it stunned even my Dad. I immediately stood up & burst into tears. My Dad asked me if I was hurt & when I stopped to think about it I realized I wasn’t physically hurt at all. What I did feel was betrayal & anger. Eddie only hit Derek, not me. I’m his Mom; I’m his soft spot, his refuge. When the meltdown was finished, he ran to me for a massage & a hug. I obliged & realized the relationship between us was unconditional love.
September was the start of home-based Applied Behavioral Analysis (ABA) therapy. His intake was completed in August and his case manager recommended Eddie receives 30 hours a week of one on one treatment focused on improving his behaviors. Initially, I was skeptical. 30 hours seemed too much for him, but we promised our developmental pediatrician we would give it a try. Our family quickly realized this play-based therapy was a great fit for Eddie. Over the fall, his ABA therapists began to feel like family. They were able to share strategies to limit meltdowns, aid in transitions, assist with social interaction with the goal of Eddie being a happier kid.
In December, Eddie returned for Speech appointments & his SLP was amazed because Eddie was able to sit & participate in 3-4 skills per appointment. He attributed this improvement in large part to ABA. Eddie was able to switch therapists as his SLP was chosen because it was thought Eddie might need to use a communication device rather than rely on his speech. We were thrilled with the plan to move ahead with the focus on fine-tuning & further developing his ability to speak.
2016 started with Eddie switching from home based ABA to center based. He continues to receive one on one treatment with his same therapists, but the majority of his treatment takes place at their center. He has adjusted well & looks forward to going to sessions. Often, he brings blankets, boxing gloves, and cars & trains to share. His ABA team even saved the orange balloons from a company party just for Eddie.
In January we followed up with our developmental pediatrician with the expectation of slowing down some of these therapies & that plan was quashed rather quickly. She asked us to keep up this pace until about 3rd grade. Derek & I looked at each other, shook our heads & decided to keep it moving.
A typical week for Eddie entails 30 hours of Applied Behavioral Analysis (ABA) therapy, one OT visit, one SLP visit, 4 hours of Early Intervention, 2 school bus rides & a gymnastics class. When someone asks me how we are doing, the answer is that it’s a struggle. What we are doing is a huge time commitment & besides EI we pay for every treatment. It’s a large financial strain, a scheduling nightmare & a difficult pace to maintain. We keep in mind though that Eddie is the one doing all the hard work. He is the one participating in all the therapies, programs & appointments.
In this year, Eddie has progressed in every aspect of development. We continue to struggle with transitions, meltdowns & still leave many a public place with him screaming. His largest meltdown was about a month ago & I couldn’t shake it for at least a week. I was on edge every place we went waiting for him to react. Overall though, they are less frequent & don’t last as long. We’ve endured many a nasty look, sideways glances & disgruntled murmurings. Yet, for every rude comment an empathetic face is found to offer a kind word with gentle encouragement. Those people fall from the sky & are present right when we need them. I think I read this in Dr. Barry Prizant’s book, ‘Uniquely Human’ so I will paraphrase, “a child with ASD is not giving YOU a had time, THEY are the one who is having a hard time.” That shift in perspective has made a huge difference to me.
What I have learned in this year is to take things as they come. I’m not in a place to focus on 20, 15 or 10 years from now. Perhaps I will get there, but its too overwhelming at the moment. My child does not meet every criterion for ASD, but I believe he meets enough & I have grown to have confidence in his ASD diagnosis. I think it’s important to acknowledge he is not his diagnosis & I do not find comfort in labeling him. That being said, his diagnosis has opened doors for him to receive more therapy, qualify for Developmental Disability services & the largest benefit was the ABA. I have also learned to better navigate the healthcare system. I’m a healthcare provider & it’s still been a struggle for us. God help those who are going in blind. Local advocacy groups have proven to be a huge asset to answer questions & provide guidance. Navigating the education system is a whole other animal & knowing the advocacy groups help with parent/caregiver education is able to ease my mid a bit. I consider wait times of a year for young children to receive a diagnosis and treatment negligent & inexcusable. I cannot imagine if we had waited a full year to start our treatments where we might be. Luckily, we have employment that allows us fairly good insurance coverage; otherwise, our wait times would be longer & our options further limited. Our financial burden is still huge, but we can bear it whereas may others may end up bankrupt. I am so grateful Derek & I found employers who are flexible & understanding. Without that option, we would be drowning.
A year in & I still haven’t found a crystal ball. I am unable to see in the future, so I focus on what is happening today/tomorrow & if I have the energy I think about next week. That is our focus as a family- to get through each week without too may balls being dropped. Some weeks are better than others. Sounds like any busy family, right?