The Tough Stuff

My husband and I rarely travel anywhere at the same time without our children. Especially overnight for multiple nights. As a matter of fact I think it only happened one time 3 years ago and that’s because I needed Neurosurgery. As I recall though, I think I was forcing my husband to stay behind even then because Caleb was 18 months old and Ari was 6 weeks and I thought I would feel better knowing they were with daddy and didn’t change my mind until a few days before. It’s not something I’m comfortable with so I just don’t make a habit of it.

What happens when you’re a parent and you and your spouse leave your children at the same time is that you have to make a formal and legally binding contingency plan for the worst case scenario. We updated that document the week we left town and it creates a pit in my stomach everytime I review the fact that in the most awful of scenarios, they would need legal guardians.

In all honesty, I don’t worry about Ari. She has a mixed language delay but ultimately, when she’s landed where she’s going to land, she’s going to be ok in the world. I live, however, in a constant state of worry about Caleb. It’s not because he doesn’t have an excellent prognosis or that he isn’t making incredible gains. The road is long. The days feel even longer. I know what he needs and how to fulfill those needs because before I ever knew I’d end up being Caleb’s mom, I happened to pick a college major and get a couple of degrees and a decade’s worth of experience doing the exact thing he ended up needing in the world. But what happens if I’m gone?

I can’t say it out loud. I cry when I type it but physically I can’t say the words out loud. Because do you know what can’t happen? He can’t live in a home. He can’t not have his voice heard. He can’t have his stims suppressed. He needs to be around typical peers and screech and talk and flap and hold things 2 centimeters from his eyes and he needs to be with people who understand those things are the same as eating and breathing for a kid with Autism. I don’t come from a family of pediatric speech and occupational therapists. So that means I make a lot of contingency plans and “just in case” documents and hope that if nothing else, being under the care of people who love and “get” him will ultimately be what carries him farther in life than anything else.

I don’t know what happens to Caleb in a world where I’m not his person. I do know, though, that if it isn’t me, there’s a whole tribe of people who will love and advocate and speak up for him on my behalf. And that’s never anything to be sad about.

Love and Autism,

Erin

We’re here, we’re here!

“Take That, Autism where did you go?!”

We’re here. We never left. In the waxing and waning of parenthood where “I’ve got this” quickly turns to “What day is it?” in the amount of time it takes a Lego to lodge in your big toe, we lost track of some things around here.

We overbooked, over expected, drowned a little, came back up for air, and are trying to find our footing again. That will involve some re-organizing, consistent planning, saying “no” more, and continued consumption of caffeine.

One thing that never stopped here was Autism. Just because I wasn’t writing doesn’t mean I wasn’t feeling. I may not have been shouting about Autism from the rooftops but I at least was talking about it in a moderate volume on my back patio.

Caleb turned 5 a couple of weeks ago. That’s a whole hand, ya’ll. We had a super fun and the biggest party we’ve ever hosted here on the farm for him. There were other kids here for a party for the first time. It was space themed (because this kid is not your typical train loving boy with Autism but does love a rocketship!) and I absolutely- in more ways than one- rocked his world. “Oh hey man, here’s almost a dozen kids who are gonna come play with all your things in your personal space and we’re gonna be cool with that, ok?” And he most certainly was 🙂 He wasn’t the most outwardly social and didn’t seek any kids out but when they would come find him and swim by him in the pool he had the biggest smile on his face I’ve ever seen. And you guys- he exhibited some 100% compliant cooperative play with a friend with not just a preferred toy but an item of Autism compulsion- his Lego sets. There were no tantrums, no meltdowns, and not very much sensory seeking. But there were laughs and smiles and words. Lots of words. I got reports of how much he’s grown developmentally (and physically cause you know- 98th percentile for height) from family members who only see him a few times a year. Caleb convinced a party goer who didn’t plan on swimming to go change into a bathing suit by making sweet eye contact and verbally requesting that they “swim” with him. And I’m 100% certain he knew everything and everyone about that day was for him.

It was an amazing day and I’m excited because I think 5-6 is going to be huge for him. I wouldn’t be honest, however, if I didn’t also include that there are bittersweet aspects to our special needs children growing older. While I make a big deal out of his birthday annually because I’m so incredibly proud of his progress year to year, the older he gets, the wider the gap becomes of things he can’t do yet. He’s talking a lot but still largely nonverbal. He likes other kids but doesn’t seek them out. He plays with all the toys he got as presents but still lines them up in rows. I bought a pack of size 6 diapers today. That stung. He’s doing better but he’s not 100% there yet with potty training. At 5 you can’t hide that there’s something different about him when we go out. Which I don’t try to do and I do have a genuine “screw ‘em” philosophy to any wry glances or judgmental stares received when we’re out. I do fear, however, that because his differences are more noticeable, that there’s gonna be that one fool who says the wrong thing just audible enough for me to hear and what in turn my reaction will be. You can ask me questions- blunt ones- I don’t mind. But you can’t criticize him or even elude to criticism with him in my presence because I have a hypersensitivity to protect him like you wouldn’t even imagine and I CAN’T handle it. I admit 100% the severity of my responses have not always matched things that have happened and you may say “oh, that’s a mom thing.” It is. But when it’s about your child with special needs it’s more of a “mom on steroids after 37 Red Bulls and an all nighter at an accidental rave” thing. The poking of the Mama Bear of a special needs child is a whole other post (stay tuned!).

So, I’m excited for Caleb’s 5th year. Also obviously, I’m slightly worried I may have to punch somebody in the face before he reaches 6 but we’re all a work in progress, are we not? 😉

Fellow Autism mamas- may your child’s birthdays ALWAYS be more sweet than bitter. 

Love and Autism,

Erin

PS, for fun, and so I can do the same things my Facebook friends post on an annual basis, here’s one of those fun birthday questionnaires about Caleb. He’s not able to answer the questions himself this year, but I’m confident this is what he would say if he could!

Caleb, Age 5

Favorite Toy: Legos

Favorite Outfit: Astronaut t-shirt and Mickey Mouse pj pants

Favorite TV Show: YouTube Surprise Eggs (ya’ll know what I’m talking ‘bout)

Favorite Movie: Lego Batman

Favorite Food: Mac and Cheese

Favorite Song: Rain, rain go away

Favorite Book: PJ Masks Look and Find

Favorite Holiday: Halloween

What do you want to be when you grow up? Astronaut. Or YouTube millionaire surprise eggs opener 😉

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

 

This Little Light of Mine

Things have been super quiet on this page because I feel like I’ve had about 0.3 seconds to breathe in the last month. I work a lot of the time. I’m Caleb and Ari’s mom ALL of the time. I haven’t been in town on the weekends and so suddenly it’s been like “Take That, what???” But here I am, back at it. Because I may have taken a blogging hiatus, but Autism never takes a break.

 I used to have this stance, regarding Caleb, that we don’t separate. If there was something going on that Caleb maybe wasn’t ready for or may find overwhelming, I didn’t send Ari with daddy while I stayed with Caleb. We all simply found something else to do together. I had a very Godfather mentality of “you never turn your back on the family” and the second that I allowed Ari to do something I wasn’t sure about for Caleb, I felt like I had turned my back on him. That it meant I didn’t believe in him. The one exception I made was weekly gymnastics class for Ari because she needed consistent exposure to typically developing peers. Other than that, every picture of every outing has both of my children in it. And because I feel it’s ridiculous to blog about something without being 100% transparent about it, I’ll admit I was probably a little self righteous about it and thought it’s how everyone else should roll too. Silly Erin.

Recently I found myself at a crossroads and took Ari to an event and left Caleb behind because I wasn’t sure how he’d do but wanted her to have the opportunity so I went back on my self imposed rule. But it took an hour long midnight conversation with my best friend held up in a hotel room on a momcation to get there. And then I was certain he was watching and crying from the dining room window as we left down the driveway. Ok, I thought. I did it this one time. Fluke, not a pattern. Then my husband approached me one night last week and asked what I thought about him taking Ari to a family event while Caleb stayed behind with me. Again, full disclosure, my knee jerk reaction was to tense up, furrow my brow, and purse my lips. I automatically felt defensive and had the need to justify all the things he’s doing awesome when it was brought up how this may not be the best fit for him. Also, I 100% agreed with my husband. I find though, that I have zero tolerance for speech that is critical of my son. Constructive? Sure. Tip or trick? Yes please. Criticism or negativity that serves no purpose? I will cut you and I will cut deeply. I acknowledge there should maybe be some self regulation there versus going from zero to “I’m coming at you swinging” but today, there’s not. Also, thinking out loud, we’ll talk about the protective nature of being a special needs parent being equivalent to a grizzly bear with roid rage another day.

Ultimately, I decided my husband’s request was reasonable and appropriate and he made super fun plans with Ari while I started making super fun plans with Caleb. Then I found myself on an interesting side of a phone call with him a couple of days later. It started with “I have some concerns about Caleb.” He proceeded to tell me that he wasn’t sure about taking Ari on a trip because it didn’t feel right to leave Caleb behind. And in fairness Caleb had graciously been invited and when Brian explained that he may make a scene it was simply met with “I don’t care, we’ll figure it out.” Still, both of them at once in the perfect storm can in fact be a bit much to handle. Overall, Brian felt his plans just didn’t feel fair to Caleb. And in a moment of logic and unprecedented self-clarity I don’t usually exhibit, I told my husband the following:

“In trying to be fair to Caleb you may find you’re actually being quite unfair to Ari.”

And just like that, we realized, that we have reached a point where there is now a significant gap between Ari and Caleb’s development and we have to give her opportunities that Caleb still needs more time to grow into. It doesn’t mean he won’t get there. It doesn’t mean he won’t have the same chances. Helping one shine doesn’t mean we’re putting out the light of the other.

Shine on, Ari. Shine bright, Caleb. The rest of the world is just gonna have to put on some shades.

Love and Autism,

Erin

Rain Rain Go Away

Caleb has been saying lots of things lately and a lot of it has been spontaneous- no model needed. Last night he was eating an ice cream sandwich and went into the kitchen, came back with a spoon and declared over and over (while making very awesome eye contact) “oon! oon! oon!”. And then he grabbed my arms and wrapped them around himself because he wanted a hug. He wanted a hug because he was proud of himself for saying a new word.

Last week his thing was “Rain rain go away”. He sang it along with the song and for connected speech with /r/ and a voiced consonant in a kid with a severe case of apraxia, it was surprisingly intelligible.

Every year for several years I’ve said “2015 is going to be his year. He’ll find his words.” Which became “2016 is it! This is the year we’ll develop speech!” And then “Ok….2017. 2017 is definitely his year.” Here we are in 2018. He’ll be 5 this year. And that makes me feel funny….5 seems so official. He won’t be a toddler anymore…he’ll be his own official little person. A legit kid. How I would love for him to be able to tell me what he thinks about that.

I am not only Caleb’s mother, but also a pediatric speech pathologist. I firmly believe that you do not have to be able to say words in order to find your voice. I do not just say that because it’s a lovely cliche that gives people comfort or makes them feel better at night. It’s the truth. I love AAC. I believe in total communication. I prescribe it in my office and practice it in my home. But do you know what else? I’d love to hear my almost school aged son tell me- with the voice he was born with from the vocal folds he developed while he was in my belly- that he loves me. And it’s ok to accept all the other stuff but want that at the same time too.

I know a lot about Caleb. He doesn’t have to tell me….he doesn’t even have to show me on AAC or with pictures. I know his favorite PJ Mask is Cat Boy, that he likes waffles better than pancakes, writing is his favorite thing we work on together, his favorite dinosaur is Triceratops, and that if he knew what it meant when I asked, he’d want to be an astronaut who rides in a rocket when he grows up. (That last one I actually do know because he tells me “astronaut”, “rocket”, and “star” on a fairly regularly basis).

So when Caleb’s little voice runs around the house singing “rain rain go away” it speaks to me on a lot of different levels. Literally- yes, go away rain, you’re no fun. Amusingly, yes it’s precious to hear him sing. Figuratively- he’s a man of few but of very wise words. Rain and its cloudy skies that bring foggy minds and dark days, I would very much like for you to in fact go away. It would be fine to come again another day, but today, little Caleb wants to go outside and play. Because when the sun is out and the sky is bright, there’s a whole lot that little mouth wants to say and that puts a whole lot of hope in this mama’s heart.

If you want to know more about Apraxia, here you go.

If you want the back story on our decision to use AAC, read here.

May the rain in your week go away swiftly, friends.

 

Love and Autism,

Erin

 

No One Knew it Would be this Hard

I was talking to a colleague of mine today in casual conversation and we were talking about the personal side of Autism. How with SOME disorders, you know- at least in ballpark- some of what you can expect, diagnoses can be firm and confirmed by genetic testing, blood draws, and you can even have some insight into “why”. Because THIS genetic marker says THIS or because THAT genetic marker says THAT.

How can you know how hard Autism is going to be if you don’t even know how you ended up here to begin with?

I am a left-brained, rigid with structure, needs to know in order to function, action plan making kind of person. Like to the extreme. Some may even be surprised to find out my “we need to do this and then this and then that” personality is fueled only by caffeine. So, when I thought Caleb had Autism, I tried desperately for it to be ANYTHING else.

I wanted him to be deaf and not hearing anything. That would solve his language delay and lack of awareness. I also wanted to have had CMV while pregnant, I wanted him to have a genetic syndrome, and anything else that wasn’t the “A” word. That’s not to insult people that that has happened to or to trivialize other people’s experiences. That is simply said to be transparently authentic into what this journey is like.

It is 100% not because I thought he would be “better off” having this disorder over that disorder- it was because- at 21 months old being my very first baby- I needed to know and I needed to know why. It took  awhile after my first suspicions of Autism for it to be confirmed. There was no panel to run or blood draw to send off to tell me for sure. And then there came the onslaught of how and why.  There’s nothing to definitively tell me that either. I didn’t know where we sat in terms of function or severity…….how do I make one of my infamous action plans if I don’t know what I’m up against?

I will tell you- if you’re not in that part of the journey yet- that even for the most rigid of us- “going with the flow” comes in time and in the wise words of Queen Elsa, you do finally reach a point of being able to “Let it Go.”

You acknowledge, you grieve, you accept. And you focus on what your child needs to be the most successful version of themselves day to day. And you learn- if by trial and error alone- that obsessing over how you ended up where you are doesn’t help you get where you want to be, so you learn to give zero foxes about functioning levels and prognoses and why and how and you do what you need to do to make it through the day. That doesn’t mean you don’t worry, it doesn’t mean you don’t stress, it doesn’t mean you don’t need a minute because you feel overwhelmed. It simply means you have found the beauty that exists in the chaos and know that there’s light at the end of the tunnel. Even if you need a match to guide you to it. Or a Mag Light. Or one of those massive bright orange lights that air traffic control uses. No matter- you know you’ll get there.

So no- no one knew it would be this hard. Because no one knew what they were up against. Fortunately, what we also didn’t know is how strong we were to advocate for someone who hadn’t found their voice yet, how blessed we were to be a part of someone living life unapologetically, or how much we could love another human being.

Here’s to the beautiful mess that is not knowing, mamas. May we never have it all quite figured out.

 

Love and Autism,

Erin

The Words Unspoken

From the title I imagine you thought this post was going to be about having a child with nonverbal Autism. Nope! Plot twist.

We had plans today but some crud swept through here preventing us from going. We managed to work up enough good vibes to go to Lowes and the grocery store though. Running errands with Caleb isn’t easy, but we’re not people who take the easy way out anyways.

And I was so excited when it was over! I thought he did an amazing job! We were in Lowes for 35 minutes and Caleb sat in the bottom of the cart and built Lego people and was very quiet and happy as long we we were walking around the store. Which we did while I bombarded him with household vocabulary through the different departments. Then we went to Aldi and he continued building Lego people in the bottom of the cart while we went through the aisles. We passed the bread section, he took my hand and pointed to the wall of carbs, then put my hand directly on what he wanted as we walked by it all slowly. So, to reinforce awesome communication, I opened up the Sweet Hawaiian Rolls and he ate 3 until we checked out and were loaded in the car. No screeches, no attempts to leave the cart, no stomps- it was peaceful and nice and fun.

But when I was recanting to someone later about how proud I was of him, I got the wind taken 0ut of my sails a little. I was posed with the question, “but how successful was it really?”. They proceeded to tell me that Lowes was only successful because I kept the cart moving and Aldi was only successful because I gave him food. And that I wouldn’t have been able to do it by myself because I needed my husband to take Ari and get the needed items and I had to have a cart dedicated to making Caleb my sole responsibility.

I have noticed that things like this being said to me is becoming a trend. Sometimes, people bring things he has trouble with to my attention. Like I don’t make a 15 category lesson plan every single day for him to address his difficulties and delays and don’t know what he needs. Sometimes, people also only compliment him in relation to his Autism. “Thats so great! When would he have done that if he didn’t have Autism?” or “For a kid with Autism, he worked that puzzle really quickly.” There’s this whole big category of things people could say that goes largely unsaid by 90% of people we come into contact with. The words left unspoken are all the things he’s doing well or all the amazing things about him that have nothing to do with Autism. Don’t tell me what he’s struggling with, tell me what you notice he’s rocking out on. Compliment him on his achievements because he achieved them- not because he achieved them despite Autism. Yes, it is true that I have a large social media presence that revolves around the fact he has Autism- but that is not for him. That is for me and for other parents on this journey and to educated and promote acceptance. If you know me- like really know me- then you know I talk about Caleb allll the time and it is rarely in a context that has anything to do with Autism.

If 3 Lego men, a tour of Lowes, and a $1.75 package of Sweet Hawaiian rolls is all it takes for us to run hours worth of errands successfully, SO BE IT. He’s 4. This is obviously not the end goal. But before you get where you want to be, you have to simply start where you are. And this is where we are today, so this is where we’re starting.

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Love, Autism, and Hawaiian Rolls,

Erin

Yes Mamas- there is a Santa Claus.

I have a friend and fellow mama who said to me recently, “If you write a blog about people understanding kids with Autism during the holidays, I will share it. My family will share it, my friends will share it, it will be shared.”

So, now I take requests 🙂

As a grown, responsible, typically functioning adult at Christmas there is a lot you have to think about, take in, and execute in order to participate in the holidays. There’s decorations, lights, different foods, extra time in stores, more navigating through crowds and parking lots, music, the list goes on and on and on. It’s exciting, fun, and maybe a little bit adventurous. Do you know what else it is?

Overwhelming.

Now, imagine all those new smells, new sights, new sounds, new tastes, new additions to routine, breaks in routine, extra people, extra noise, AND you have something about you that makes the following likely true: 1) You don’t have the language to communicate how all of these things make you feel- whether they make you happy or upset you, the words or abstract concepts these things elicit are not readily available to you. 2) You have sensory integration difficulties that make you hypersensitive to noises, lights, smells, etc. and all of those things are coming at you all at one time. 3) Your social skills are a work in progress and you don’t understand waiting your turn in line, why Santa wants to get all up in your business, and that all those toys you see in every store don’t get to hop in the cart and come home with you immediately.

Let me tell you a couple things that might happen when your little body feels all of those big feelings.

  • Meltdowns. For a NUMBER of reasons. Communication barrier, over stimulation of sensory input, difficulty understanding how to respond in negative situations, and a dozen other things. Do you notice what I didn’t put on that list? Meltdowns resulting from lack of or poor execution of parenting skills. Meltdowns because parents don’t discipline their children. Meltdowns because kids are spoiled. Those aren’t on the list because that is likely what you assume is causing meltdowns in children you see in a superficial glance across the mall food court. It’s easier to blame somebody’s mama instead of taking the time to learn about a disorder no one in the world has ever been able to fully understand. Let’s do better than this.
  • Stims. The NEED to stim. Not the preference to….the NEED to. A stim, or self stimulatory behavior, is most typically a repetition of sounds or movements that a child with Autism does to calm them and help them focus. It could be a loud, repetitive sound, it could be hand flapping, it could be rocking, it could be spinning an object- there are no rules. It could also be because they are immensely excited to see Santa or also because they are terrified of seeing Santa. Stims happen in response to feelings and sensory input that is deemed both preferable and non-preferential in kids. So if you are beside a kid in a checkout line flapping their arms against the back of your coat or if you see a kid with the lights from the Christmas decorations half an inch from the corner of their eye- it is a stim. And it is, in 100% of opportunities, to be respected. What if someone told you you couldn’t cry when you’re sad or take deep breaths to calm down? You’re self regulating. The fact that others need to self regulate in a different kind of way shouldn’t concern anyone to the point of annoyance

Now that I have told you about what my child needs, let me tell you what I need.

  • I need your silence a lot more than I need your opinion. I don’t even need your support- that would be demanding. I’d love to have it, but it’s no loss to me if I don’t. But I absolutely don’t need you to say “You should really…..”, “Have you thought about……”, “My brother’s girlfriend’s grandma’s coworker has a kid and….”. Do you know how many breaths it takes to tell someone “You’re doing a good job” versus how many it takes to tell someone “What’s wrong with your kid?”. The exact same amount.
  • I need you to understand why I’m here. I don’t need you to understand my child- I don’t  even fully understand him some days. I need you to understand why in the world- even though I know that it could end with both of us in tears, that there will be sensory overload, that the novel vocabulary is unknown, and that the social norms aren’t understood, why we are here doing this anyways. There’s lots of reasons- you don’t learn skills unless you practice them, socialization, learning in natural settings, blah blah blah. That’s what the clinician in me says. But do you know how I answer that question as a mama, not as a therapist? We are here because I refuse to accept that my child can not have the opportunities to do everything every other child has the opportunity to do. It does not matter if we come and we try and it’s horribly unsuccessful. Because maybe it won’t be. Or maybe it will be until all of a sudden it’s not. But when it works it’s going to be amazing. If you can read the last 5 sentences I wrote without an emotional reaction- without tearing up, losing your breath for a second, nodding your head in agreement, then you. don’t. get it yet. And me and my army of Autism mamas need you to go back and read this and the entire rest of the Internet until you do.

This is my son’s 5th Christmas and I do not have a picture of him with Santa. I want one. Desperately. For him, because I think he would like it and also, for me. Because there are so many things that haven’t gone as I had pictured them, that this one potential picture with Santa means we’re getting there. It doesn’t mean that a stranger in a red suit finds out he wants a Nerf gun. It means that I have a snap shot of progress and there’s hope for me that one day he’ll get to take a child of his own to see Santa.

So, I’m the crazy mama calling malls trying to set something up for him and as a backup plan, I bought my own ever lovin’ Santa suit at Party City this weekend. That’s beside the point though. What I really need you to understand, is that if you see a little one out this holiday season having a hard time and their mama is having a hard time with their hard time- be slow to judge, even slower to speak, and try to have some holiday compassion. Anything you can do to contribute to their success represents so much more than JUST a picture with Santa, JUST sitting through the Nutcracker, or JUST posing in front of a Christmas tree.

Behind every little lap sitting with Santa is a parent who believed they could. And with a little Christmas magic, anything is possible.

Love and Autism,

Erin

Her Brother’s Keeper

This whole “Take That, Autism!” site was started for my son Caleb. You can read about that here. Ari is his little sister, born barely 18 months after he was. You can read her backstory here. I found out she was on her way when Caleb was only 9 months old and Autism wasn’t on the radar. And while I was overwhelmed at having two little ones so close together, I ultimately decided that it would be amazing for them to be so close in age because they would be best friends and partners in crime. I am an only child. I think, particularly now as an adult, that that would be an amazing relationship to have. So ultimately, I was excited for them.

Things have played out a little differently but we are getting there. When Ari came home from the hospital, Caleb was young but developmentally, I would have still expected a minimal interest and intrigue in her. Caleb had about zero environmental awareness that she was even here. That’s a devastating reality to the fantasy you have in your head of what it will be like when your children meet each other. Her 3rd birthday is coming up soon and this past summer was the first time he’s had an interest in her. Which has also been heartbreaking because she has so desperately wanted him to be her friend. Her little voice exclaims, “Caleb!” and she does what he does and follows him where he goes because she just desperately wants love back from him. And I believe, in fact, that he does love her. But I had a conversation with co-workers this evening about how Autism expresses love in non-traditional ways. Caleb will take all the toys but give her back the frogs because he knows those are her favorite. He will squeeze her ears when she does something she likes because that’s simply what he’s decided means “I love you.” And while I have to redirect behavior so that he is sharing and not stealing and being gentle and not hurting her, I understand what his actions mean when his words fail him.

I could see, however, that from the outside looking in, it may appear as though we are running a fun house. We aren’t. Everything has a rhyme and a reason and a purpose. Someone said once, “she has it rough with him.” And it made me sad and mad and reflective all at the same time.

It’s a perpetual concern of mine that Ari not get left behind. But that is different than being hardshipped by being his brother. I would be naive, I suppose, to assume that it wouldn’t be easier for her to not have to deal with his communication barrier, compulsions, sensory seeking, <insert all other challenges one faces with Autism here>, but…….I’m not comfortable viewing the situation as a negative one for her.

What I hope though, is that being Caleb’s brother will make her a strong, compassionate, individual. I hope that she learns to accept people without judging them, truly understand’s a person’s worth, figures out how to think outside the box, and ultimately gives zero consideration to anything negative someone thinks about her. If she is successful in achieving those things, she will have done so by learning them from her big brother. Because if there’s anyone who’s out there living his best life without regard to what anyone thinks about it, it’s Caleb. And maybe that’s because his social skills are developing in an atypical way, but what a relief I sometimes feel it would be to live my life like that too.

I hope also, that when she is older, (if her father and I do our jobs correctly), that no matter what level of support Caleb ends up needing- that she always feels the need to help and protect him. I don’t want her to grow up and live her own life and have the attitude of “he’s not my problem anymore.” One does not have to harbor resentment in order to feel a responsibility to someone. That is what I want for her. I want her to worry about him, go out of her way for him, and defend him if he ever needs it. Because he is her family.

In a world where she gets to choose to have anything she wants, I hope the first thing she always chooses to have, is his back.

Love and Autism,

Erin