Finding Joy in the Journey

It’s an honor to host my friend Crystal as a guest blogger today on behalf of the amazing company I work for, BPT Kidz! Please read the story she wrote for us on how she turned fear into perseverance and even managed to find joy in the journey following her son’s diagnosis of Autism. Thank you, Crystal, for helping us help other families find their joy, too.

“I was not a new mom. My daughter was 10 years old when my son, Weston, came into the world. I was
not a new mom, but after my son turned one, I found myself in unknown territory. As a mom of a
child who met all milestones appropriately, was healthy, happy and still alive — I thought I was rocking
this mom gig! So, when my son was not meeting milestones appropriately I questioned myself. Was I not
working with him enough? Was he getting enough one-on-one time that was educational? Was I slacking?
I figured this was probably the answer. You see, I was in my early 30’s when my son came into this world-
not old but definitely not young either. I noticed things but listened to family and friends when they said
“He’s a boy,” “Boys are different from girls,” or  “He looks and acts fine.”  “You’re just looking for
something!” At this point I should mention that I work in an ER. So my friends are respected, educated
professionals, whose opinions I value. In my job I see and learn a lot- but I realized a long time ago that I
only know a little about a lot. Mostly, it’s just enough to scare the hell out of myself. But when enough
people tell you that it’s all in your head (no one actually said these words but-it was implied) you start to
believe it. They meant no harm they just didn’t want me to worry because they love us both.
But they were doing harm-regardless of their intentions. I didn’t realize it then but I needed someone to
see what I was seeing. I needed someone to say “It’s not in your head, we see it and it’s nothing to worry
about.” Or at least I thought this was what I needed. So at my son’s 15 month check-up I told his
pediatrician of my concerns. In detail. This was the first time I heard the word Autism. She quickly
followed it with “but he’s so young, they typically don’t like to test or diagnose at this young of an age.” So
as I left the office that morning, I cried all the way home. I convinced myself that she wasn’t really
concerned with my son having Autism, she was just trying to give a VERY persistent parent an
explanation about certain questions that couldn’t yet be explained.
Let’s face it….. I am that parent. That parent that wants or needs a definitive answer. A “let’s watch and see
approach” is not the parent I am. I wanted an answer. I wanted that answer to be “YOU’RE not working
hard enough. YOU’RE not investing enough time!” It may seem strange that this is what I wanted to hear,
but I already know that I’M flawed. I already know that I slack at times. I yell, cuss occasionally, cry, and
get wrapped up in life and my other child. I let him go to bed with a Sippy cup of milk (huge no-no),
sometimes forget to make him brush his teeth twice a day, forget and let him play outside without
sunscreen, etc. This list could go on and on. But the problem HAD to be ME! It just had to be. Had to be
due to my short comings because he was ABSOLUTELY AMAZING! The fact that he couldn’t say
“mama” but could say “elephant” clearly suggested that I was too attentive. He didn’t or wouldn’t say my
name because I was a helicopter parent. I hovered so he didn’t need to say my name. Yes, I was actually
told this too by family and friends. This made more sense than the possibility that there was something
wrong with HIM. This also accounted for the reason he still spoke baby gibberish and pointed to stuff
instead of actually asking for it with words. I was meeting his needs before he had to ask.
So, instead of a specialist appointment I asked for a referral for speech therapy. I put him to bed that
night and researched Autism. Signs, symptoms, causes. If you’re like me and have done this too, then
you know my frustrations. No definitive causes or at least not to date. Signs and symptoms all vary. So I
went through list after list until I found more symptoms that he DID NOT meet verses the ones he DID.
This let me feel a small bit of relief. You see, by choosing to not have him evaluated sooner I already
knew that I was doing him a disservice. This wasn’t for him, although I justified that it was. It was for
my own selfish reasons. I was scared. Scared of the right here-right now. Scared of the unknown. Scared of
not ever knowing or understanding. Scared of an uncertain future. Scared that I wouldn’t know how to
help him and that would make me an even worse parent. But I promised him after his 15 month checkup
that everything would be okay and by God it would! So we were interviewed by PCS for speech needs.
A lady came to the house and evaluated him and said he was fine. She saw no red flags for Autism. She
didn’t see a need for speech therapy either. His word bank was on target although they weren’t the
typical first words, they were his. Again, another breath of relief. But this relief didn’t last long. That
mother’s instinct kept telling me to not sit on this. To not find comfort in this slice of good news because
I knew that I was trying to soothe my own beat-up ego.
We started speech therapy with a very nice gentleman named Jim. Imagine my mama heart break when
my son starts to say his name before mine! I have always rejoiced in my child’s victories no matter how small and I rejoiced this time too, but this one hurt to the core! On our very first visit Jim stated that my
child has Echolalia. Another first for me. I only knew that he continuously repeated things and didn’t
seem to understand things, like questions. Example: “What did you do today?” He would reply “What
did you do today?” I had no idea what a speech pathologist does. As stupid as it sounds now, I just
thought they taught him words. Which was just another reason to beat myself up….. I couldn’t even teach
my son to talk, I thought. Boy was I wrong- about everything. Jim casually mentioned getting an
evaluation, which I shut down immediately. I had already come to terms with it being my fault.
Undeterred, Jim continued to work with my child and after 12 visits (all his insurance would allow at the
time) we needed another referral. Jim also decided it was time to retire so now I was back at ground zero.
Jim was helpful though. He taught my son various tongue movements/exercises that would make
different sounds to use to make new words. He used play and pictures for my child. He taught me that
Weston would respond to softer voices before loud or screaming because he blocked those out. We also
discussed the benefits of pre-school. By this time my son was almost 3. So, I started looking into pre
schools. My son needed social skills that being with mom all day everyday couldn’t offer. I thought that
he would pick up from other kids and compete (in a sense) with other kids for the teacher’s attention. I
found a great pre-school where he could go just in the mornings and they had a speech therapist who
came in and worked with the children. So we started pre-school.
This is where we met our favorite speech pathologist/friend/person/neighbor. She has saved us. She is all
these things and so much more. She started working with Weston immediately. His teachers always gave
good reports. He was not disruptive during class but he was easily distracted. I didn’t realize it then but
Erin knew from Weston’s very first interaction with her that he was on the spectrum. She gently
suggested an evaluation too but again I shot it down. I didn’t know her well enough to trust her judgment
and I didn’t think that she knew my son well enough yet either. This may seem crazy but I just knew that
once she spent enough time with him she would see him for the true perfection that he is. Needless to say,
I didn’t make things easy for her. She still persevered- for him. Erin also suggested that Weston may
benefit from Occupational therapy as well. I followed these recommendations because— we were
building trust, right? Not to mention, my son was taking leaps in his speech that even my layman’s brain
could obviously see. We met his OT, Krystal, when he was around 3 and a half years old. And yes, I was just as
hard headed with her. But she too, stuck with my child. As it turns out, they DID see how perfect he was.
They also saw just how much he needed them, even when I didn’t. So now he was getting both speech
and occupational therapy. After his evaluation for OT, true to form, Krystal suggested an eval too. Well, if you’ve read all this then you know how well that went over. I wasn’t impressed with a label and honestly, it still scared the hell out of me. In my mind I didn’t understand why if we were getting all of his needs met without it, why was it so important?
These lovely ladies never pushed me, never demanded. They just taught me, too. I recently pointed out
to Erin that I now know, that she knew from the very first interaction with my child that he was on the
spectrum. When asked why she didn’t shake me or scream at me to understand….. In true Erin fashion,
she calmly replied “because you weren’t ready, mama.” Boy! Is she awesome or what!
So a year and half go by and now it’s time to decide on schools for kindergarten. Now it’s time for a
reality check. Is my son ready for public schools? You see after spending a year and half with these
amazing women, I realize all the work they do. All the help my son needs. I now know that he has poor
short term memory. So now when asked “What did you do today?” he will only answer with the things
that stand out the most. He’s not repeating me anymore but he still cannot respond in detail about his
day. He needs 8 seconds or more of processing time. So he cannot respond as quickly as your typical 5
year old can. He can’t be still and is easily distracted by things as simple as the hum of the light bulbs. I
realized though, it was finally time. TIME FOR AN EVALUATION. In order to get the
accommodations we needed for him to be successful in school, he was going to need a diagnosis.

Here we go back to his pediatrician and asked for a referral. On that day-the day of my child’s 5 year
check-up, his Dr. diagnosed him with Autism, ADHD and Sensory Delays. This time I sat quietly. You
see, that’s when you know that the professionals you’ve entrusted your child’s life with are amazing. She
knew all along too….like Erin, she was just waiting for me to get there. I sat silently by as my cheeks
became wet and I had a very humbling experience and an EPIPHANY! THIS was not due to my short comings as a mother nor my fault! I had done everything that I knew to do and everything I had been told to do. This was no one’s
fault.There was no fault to be placed because there was no fault at all! It just was. My God doesn’t make
mistakes! Although, I question myself constantly, my God saw fit that I raise this beautiful intelligent
spit-fire blessing-who was made PERFECTLY!
When we returned to therapy the following day after receiving the diagnosis I was overwhelmed with
the love of his therapists. Our people. Our village. They understood my anger. My resistance. My need
for knowledge. Our needs. They just get it. I have no idea where we would be without them. I shudder to
think. I was so scared. Not so much anymore. Not because I finally know all the answers but because we
have-THEM…our people. They have been there for me too….and he’s the one they signed on for.
God designed our paths a long time ago to cross. Since the diagnosis I have had a roller coaster ride of
emotions. I still question things-some that make sense, some that don’t. Like, maybe if I had taken my
prenatal vitamins longer while nursing for those 14 months or maybe the immunizations caused it, etc.
Acceptance doesn’t mean you just stop moving because you’ve reached it. I’ve finally, 3 and a half years after
starting this journey feel I’ve reached acceptance. But you don’t or can’t linger here. I still ask questions. I
still have to work extra hard to understand. We have almost completed kindergarten. My sweet
affectionate boy is reading and writing! He went to a public pre-school for 2 years and came out with a
few war wounds but still wasn’t able to recognize his ABC’s. He was doing what they asked of him but had no idea what he was doing. It took me accepting that he needed more. Recognizing that traditional public school and experiences may not be what HE needs and then researching my options. Now with the help of “my village,” my child is excelling.
I still cry for the unknown future Weston holds. The chances that he’ll never have like joining the
military…. I know as a mom you really don’t like that idea either, but I’ve told my kids they can be
ANYTHING they set their minds to. SO to have an option- any option-taken the moment that diagnosis
was put in his chart is yet another reminder of how unfair it all is. I worry about him being in an unfair
world without me in it to “Mama Bear” and defend him-no matter how old he is. I worry about him being
pulled over by police and not being able to respond quickly enough for them to feel like he’s not a threat
due to his processing needs. My point, even with acceptance still comes concerns and questions. That’s
why awareness is so important. Everyone should be aware. It’s scary and it’s confusing….but it’s worth it.
Chances are you already know someone on the spectrum. They may not even know they are. But practice
a little compassion and understanding with everyone and you’ll never have to question how you treated
anyone-ever.”

Crystal Keffer

When Everyday is Autism Day

Tomorrow, April 2nd, is World Autism Day. It’s a day dedicated to the recognition of what Autism is, how we can help others know more about it, and ultimately how those things can lead to acceptance of individuals with Autism. April is also Autism Awareness Month, so, theoretically, there should be lots of opportunities to share and educate about Autism.

I have no problem with Awareness days and campaigns. I appreciate and support them because I work with lots of people they pertain to. I think it’s important to acknowledge what other individuals with different circumstances are doing in the world, how we can advance research for these causes, and most importantly, how to educate people to not be ignorant about what they don’t know they don’t know. If it takes a particular day being dedicated to something to get people’s attention to do that, that’s fine by me. So today, and the next 28 days, are that for my son. A chance for people to increase their awareness, education, and acceptance of him.

But for our family, it’s different. April’s clock will tick out and it will be May 1st and guess what? It’s still going to be Autism Day. Because EVERY day is Autism day here.

Like I said, I appreciate awareness days. I am a proponent of education, awareness, and acceptance. But do you want to know where my frustration begins? When there is no “action” that follows all of those other campaign friendly words tied up in their neat little bows.

Tomorrow, I ask something of you. Don’t make a post saying “It’s Autism Day!”. That’s just words. It’s likely with the current statistics for ASD incidence rates that you know someone with Autism. Your blue filter on your profile picture in honor of my kid doesn’t mean anything to me. I appreciate very much the spirit in which it is meant, but what have you actually done when you filter or frame or just type out the word “Autism”?

Don’t worry- I don’t complain without offering up an alternative action plan 😉 Here are some thoughts on how you can make families who live Autism Day everyday feel a little more recognized, appreciated, and accepted 🙂

  1. Tell somebody what they’re doing well. Insider’s secret: However confidently we pick a screaming, sprawling child up off of a museum floor to carry onto the next exhibit, sometimes, inside- we die a little each time. It’s not so much that we care what people think, but we have a split second to strategize how we can rebound before hitting the meltdown point of no return and it’s stressful as all get out until we get there. It takes a lot of physical preparation and mental energy to get back out there and keep doing it time and time again but we do, because guess what? The day we don’t reach into the touch tank at the aquarium and body slam a starfish onto the rocks is going to feel amazing. I find, personally, this is where I feel the most lacking as a parent. I am my son’s therapist and his mother. I make his education plans, his therapeutic interventions, and I parent him. Today, it works for us, so we’ll keep moving forward like this until one day it doesn’t. But that also means that if I want cheerleading, I need to break my own pom poms out. So please, friends- it will mean so much more to a mama if you cheer them on instead of changing your profile picture.
  2. Ask how you can better interact with their child. Caleb has a lot of people in his life who have learned a lot over the last couple of years and do a great job with him, and there are others still that don’t get it and don’t seem to want to. I’ve talked before how the first person my husband ever met with Autism was his son. He’s learned so much and does so well with him and educates others on how to appropriately interact with him that it makes my wife, mama, and pediatric therapist heart burst with pride. This past Friday Caleb stayed with a babysitter before Brian went out of town and the babysitter redirected him to not do something but Brian explained to her how it was ok because it was a proprioceptive sensory seeking behavior. And that to me, is far more romantic than a bouquet of roses. Sometimes kids with Autism don’t always play in a typical way. Instead of watching them from the sidelines, ask how you can change how you interact with them versus waiting for them to change how they’re playing. Social skills are hard- ask how you can help facilitate eye contact or conversation- just don’t ignore people. I don’t want my son completely pulled from his world into into ours. I want to live in the peaceful place where those worlds meet.
  3. Don’t assume. Don’t assume that being nonverbal is the same as not having something to say. Don’t assume behaviors originate from poor parenting versus compulsions or sensory seeking needs. Say “hi” to my son every time you see him, even if he doesn’t say “hi” back. Instead of thinking “wow, Caleb’s really having a hard time” think “what in the environment is difficult for him?”. Just don’t assume. Be a decent person about things.

Thanks for sticking around to read one mom’s thoughts on the importance of World Autism Day and how you can DO one small thing to make all the difference for someone else.

 

Love and Autism,

Erin