Autistic Child or Child with Autism?

Early in my career, I would use the term ‘autistic child’ when describing a case while writing papers. My wife, the speech pathologist ever so connected with her families, would always correct me that it’s a ‘child with autism’… the child has autism…. autism doesn’t define the child. I would change the wording to appease her but thought it was kind of silly, surely there’s no real difference in semantics. Well, I am realizing that I was wrong.

Not so much about the phrasing as I still maintain these are interchangeable; however, the sentiments behind the perception of children with autism are very real. I have long expected Caleb to be seen as autism incarnate by strangers when out in public. They don’t know Caleb and will not get to know him so it’s whatever, no skin off my back. What’s becoming more apparent is how close friends and family perceive him. To some, he’s Caleb this cool kid who also has autism much like other kids might have asthma or diabetes. Others see Caleb as autism, full stop, and all conversation must revolve around this. The fixation is not something I had anticipated.

Caleb’s godfather is a great example of not defining Caleb by his autism. Heck, I don’t think I’ve ever even heard him say the word autism over the past several years. This isn’t because he doesn’t know or doesn’t care, but rather that he’s just interested in Caleb being Caleb. Sharing a new word that Caleb just said doesn’t evoke the all too common response of “how many words should he be saying” or “that’s great but when will he talk normally?”. I really appreciate this and I know Caleb will too. He deserves to stand on his own without every action being constantly put under the autism microscope (not microscope with autism, Erin!).

The truth is that we don’t know what’s going to happen, and you probably won’t either with your child. The best we can do is to try our utmost to provide Caleb with all of the tools he needs and take one day at a time. Sometimes when Caleb does something awesome, Erin and I will say “Yeah! Take That, Autism!”. But sometimes, Caleb just needs to hear “Awesome, buddy!” and that’s it. He can be awesome on his own without needing his awesomeness to always be defined in relation to autism.

I don’t want to this sound critical, or even forbid, whiny. I really appreciate having friends and family who love Caleb and have his best interests at heart. I just don’t want them to miss out on Caleb himself though with the autism filter removed. The Caleb who enjoys sitting still while bird watching, figured out how to make his own roller skates out of toy cars, and has already taken a strong interest in helping me build with tools.

….He’s a pretty cool kid once you get know him.

 

Brian

It’s Hard Because You’re Doing It Right

Maybe you need to hear this today. Or yesterday, perhaps. Me? I need to hear it everyday.

I have a major pet peeve when I hear people say “I LOVE Autism!” “Autism is my PASSION!”. I’m a speech pathologist- I have a Master’s Degree based on my ability to utilize the English Language to convey specific meaning to my communication partners so yes- I get hung up on semantics. You do not love Autism. Maybe you love helping kids with Autism. Maybe helping families who just received a diagnosis is your passion. But you do not LOVE Autism. If you do, then you and Autism have never met. Cause Autism sucks.

My kid? Nah- he’s perfection on a silver platter. But my kid is not Autism. It’s just something he happens to have.

Back to the “Autism sucks” stuff. It does. And all the feelings we feel as parents of children with Autism? Those suck too. But let me let you in on a secret- having those feelings means you’re doing it right.

The punch to your gut that makes your stomach flip five ways to Sunday when you realize you can’t stop pretending “nothing’s wrong” or “he’ll come around”? That’s ok. It means you care about your child and the challenges he or she will face and the future that awaits them. You wouldn’t feel literally nauseous to your stomach, barely able to get dressed to go to your Developmental Pediatrics evaluation if you didn’t care what the future holds. I describe that so vividly because I lived it. Twice.

The exhaustion you feel that makes you feed your children tortilla chips for dinner and watch an extra episode of Clifford the Big Red Dog so you get an extra 23 minutes to “just be?” It’s because you have made a commitment to your child and took them to back to back speech and OT appointments, met the ABA therapist right after, and stopped every two hours to keep your child on their sensory diet. You’re exhausted because you’re putting every ounce of energy you have into making your child as successful as they can be. I tell people all the time that going to work is the easy part of my day. When I get home is when the real work begins. Parenting a child with Autism and making the right moves at the right time is the most challenging thing I’ve ever done.

The almost paralyzing frustration you sometimes feel that suffocates you and literally makes it hard to breathe when someone says the wrong thing or gives the wrong look at the wrong time in the grocery store? It’s because you love your child unconditionally and would walk through fire to never have to have them know how ignorant some people can be. Loving someone this much is exhausting. But incredibly rewarding.

This isn’t a negative post. It’s actually the opposite. It’s intent is to put a positive spin on all the feelings I described above. You feel those feelings because you’re doing this right. If you weren’t worried about your child, didn’t care if he reached his maximum potential, and didn’t want everyone to recognize how AMAZING of an individual your child is, then you’d never feel sick to your stomach, you’d always get a full night’s sleep, and you’d be oblivious to jerks in the cereal aisle at Costco.

Keep on keeping on, mamas. (And daddies, aunties, grannies, mammies, pappies, big bros, little sis’s- whoever you are, keep on trucking). I won’t tell you to “Keep Calm” because that’s impossible. Just keep on. If you need to cry or yell or curse along the way- that’s fine. Just. Keep. On. You’ve got this. Because you know there’s too much at stake if you don’t.

You’re doing a great job. I’m here for you. I believe in you.

Love,

Erin

 

1,460 Days

It’s been 1,460 days since we met. Well…technically not until tonight at 9:02 because you were an obstinate 24 hour labor, but who’s keeping score 😉 ?

I didn’t know 1,460 days ago when you made me a mom that I was also becoming a special needs mom. I didn’t realize the journey that was ahead of us, the emotions that would come when I knew “something wasn’t right”, or the heartache I would feel when my suspicions were confirmed.
1,460 days ago, I also didn’t know that I could love another human being as much as I love you. I didn’t realize that a kid could be so quiet yet have so much to say, that someone who doesn’t like to socialize would be so affectionate, and that I would want so desperately to eat each and every single one of your toes.
My love for you is a different kind of love. It has components of fear of the unknown that make me check on you several times each night. It’s tangled up in an affectionate web of worry that has you on my mind almost all day long. It has me clinging to our good days and cringing when we have bad ones. I love you hard. And a love that intense comes with a vast array of emotions.
But I’d like to thank you, my love. Over the last 1,460 days you have taught me that I can handle more than I ever thought. That I can take the bad with the good and remain optimistic, and how to prioritize my time. You’ve also given me the confidence to take on the world with you by my side and not give a you-know-what about anything anyone thinks or says about us.
I love your sister an incredible amount. And any future siblings you may one day have. But when it is all said and done, when I leave this place, I will leave here having loved you the longest and that counts for something.
 
Happy Birthday, my love. Know that there aren’t enough words for me to accurately describe how incredible I think you are or that would capture just how much I care about you. Because I love you so much more than simply to the moon and back.
May the next 1,460 days be as amazing as these have been.
Love and Autism,
Mama

Happy Father’s Day

The first child you ever met with Autism was your son.

That’s a circumstance that you met with a steady hand, calm brow, and pocket full of patience.

I know you were excited when we found out that our first child would be a son. I know that you looked forward to playing catch and talking about dinosaurs together. I know also, that it’s probably disappointing that you haven’t been able to do those things yet.

What I know more than that, though, is that the grace that you have displayed in not having tossed a ball back and forth with our son or had an exchange about velociraptors versus t-rexes is to be commended. I know we speak often that we do not deserve praise or special attention for anything we do with our son because we’re his parents- we’re simply doing what we are supposed to do as those people in his life and it just happens that our situation calls for a little extra effort with him. You should understand, at least, that I notice you. I notice that you don’t force a ball in his hands because it’s something you want him to do, but that rather, you sit beside him nicely as he lines up rocks when we go outside. I notice that just because he doesn’t talk back to you, that you still continue to tell him everything about your days together and how proud you are of him every night when you tuck him into bed. And one day, I know the dino talk will come. In one way or another.

Today, on your 4th Father’s Day, I want you to know that you’ve been doing an extraordinary job being Caleb’s dad. His confidence, intelligence, and perseverance all come from you.

Happy Father’s Day, my love. Caleb won’t understand what today is. But know, anyways, that he wouldn’t be the incredible, amazing child that he is without you.

Love,

Erin and Caleb. May one year he find the voice to tell you all these things himself.

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To Not Be Left Behind

Maybe you thought that click bait of a teaser title would make this article about Caleb. Being left behind academically, with peer relationships, with his own family….and while those are all certainly fears and worries I have on my mind, this article is about his sister and a mistake I have come to realize I’m making in leaving her behind.

Ari goes to a weekly gymnastics class. We don’t go to learn back flips and handstands. We’re 2. We go because it’s more of a multidisciplinary developmental program- preschool in padded rooms. She has her own delays outside of her brother’s Autism. You can read about our initial concerns with her and where those concerns ended up here. So we go to be around typically developing peers and learn and grow. In the 9 months we’ve been attending classes, this child has never held onto the bars hung independently. It’s 100% a matter of gravitational insecurity. She’ll hang from my hands, climb up my legs, and flip backwards….but will NOT hang from the bars at class. There have been weeks when the skill on the bars was fancy stuff like independently putting their knees on the bars, flipping, dropping and landing, etc. And every single time one of those skills came up to be practiced, I would say to her teacher, “we know she’s not there yet but can we please just practice hanging?”. We’d put her up there, she’d let go, and so for 9 months we held our hands over her hands so she was doing SOMETHING during bar time. And every time she’d let go the instant we did.
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Until one day when she didn’t.
Two Sundays ago it was a bar skills day. And, just like every other bar skills day for 9 months, I took her over and asked if- once again- we could just practice hanging. We put her up there, her teacher held her hands on, and then suddenly- the strangest thing happened. She held on! I let out a spastic squeal of excitement and clapped and told her what a brave girl she was about 4985739875389 times. Her teacher took her off and put her back on again to test if it was a fluke- it wasn’t! There, as the other parents probably looked up expecting to see Olympic worthy floor exercises happening on our side of the gym, my daughter hung still and simply, with the proudest grin on her face. Her teacher and I gave ourselves high 5’s because when it takes 37 weeks for a kid to learn a skill, YOU CELEBRATE IT.
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You may say to yourself, “Erin- what’s the big deal? What do you feel guilty about?”. Let me tell you.
Before that, I don’t remember the last time I celebrated her like that. Being an Autism parent means that more often than not, the little things are all we’ve got. So when Caleb does virtually ANYTHING unprompted- be it a spontaneous word, a new play skill, a social exchange- we’re so excited….and admittedly relieved…..to see progress that we party like it’s 1999. But, what I realize in hindsight is that we have a different set of expectations for Ari. Which on one note is fair, because she’s a different kid with a different set of needs. But what I think may not be fair of us; however, is that we’re expecting her at 2 years old to do all these things she doesn’t see her brother do and that she’s not getting praised for. If Caleb came up to me and said “more bubble pop” I’d order fireworks and arrange a parade through Henry County.
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If Ari came up to me and said “more bubble pop” I’d make her tell me “pop more bubbles” and raise my eyebrow for a “please” on the end. Which she would do and receive a bubble, but no parade. And while different needs and abilities may warrant different sets of expectations, I need to be better at being aware that she needs her moments in the sun as well. Like when she hung from uneven bars as if she had been born pure orangutan.

Upon my reflection, I’ve also noticed that the different set of expectations has transferred to expecting her to give up things sometimes too in the name of being the sister to a brother with Autism. Maybe Ari got up first one day and got to watch a little Sofia the First but then brother got up and the tv automatically went to PJ Masks because brother’s here and he likes what he likes. I think the universe knew that because the rigidity associated with having Autism was going to make Caleb’s flexibility intermittent so I got a go-with-the-flow baby the second time around to even my playing field. I have to be sure that her willingness to flow instead of fuss, to simply find a new toy if one is taken from her, and to not bat an eye when she sees mom and dad giving brother attention (both positive and negative), doesn’t result in her getting left behind.
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So, here I am, to reflect upon my flaws and move forward with more emphasis on doing a better job at evenly distributing praise while maintaining, at least for now, a different set of expectations for both of them. To understand that growing up the sibling of someone with special needs is going to put more on her plate than other children’s and that it is my job to mold her to be the sister that defends and stands by her brother, not to resent him for anything. Because how tragic it would be if this little spitfire of a girl didn’t fully know the depth of my love for her because I was busy giving sensory input to her brother and forgot to give her a love squeeze afterwards also? So, my little one, we’ll do better. We’ll do better celebrating everything there is to celebrate about you and making sure you know how incredibly proud of you we are. Because what will you two have if not each other?
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Love and Ari,
Erin

The Game Changer

We did something this past weekend that’s a game changer. Something that most parents do but that we had never felt comfortable  pursuing to date. We found a babysitter!

I’ll speak about this in context of my son, Caleb, who has Autism. While his little sister does have a language delay, she’s doing more everyday and has a great deal of expressive vocabulary, two word phrases, and awesome social skills. In effect- watching her is easy. If you don’t mind the sauciness her red hair brings to the table. My son, however, is more challenging. While that doesn’t make me feel awesome to say, it simply is what it is.

The only people to ever watch Caleb without my husband or myself around are his blood related grandparents. And that’s been rare and up until last month, only for us to go address things such as medical emergencies and to-do list items that he simply couldn’t be present for (buying a car, donkey surgery in the barn….you know….those fun things). Typical errands, appointments, and all leisurely activities we’ve participated in since his birth 4 years ago, we’ve brought him along to. And while we don’t necessarily want to change that because we feel getting out and about is crucial to what we’re trying to accomplish and a lot of places we go are for his benefit, it did become draining for my husband and I- who have been together for 10 years- to not have gone out by ourselves to do something fun together in almost 4 years. Also, while we’re fortunate to have one parent who is able to work from home, sometimes Brian is required to be present in person at his company’s headquarters in VA Beach. And since I’m working full-time M-F 9-6 helping lots of little people in the community, our need for a babysitter to watch our own little people emerged.

We had to start with the “who”. Never ever in my life have I ever used Facebook as a plea for help with anything but if you look at the first week of May on my personal page you’ll see a desperate “I need someone to watch my special needs son- HELP!” post. And do you know what happens when you reach out to your friends- even the ones who are “Facebook friends” only? You’re pleasantly surprised 🙂 I got lots of good feedback but knew that the teenage daughter of one my dearest friends here who had had lots of experience working with kids of all ages, including those with special needs, would definitely be the best girl for us. In previous jobs I never used my PTO for vacation- I used it to stay with my kids when my husband couldn’t be here during the day for one reason or another. Lesson learn here? Don’t try to fix everything yourself- if you need help, ask.

And help is what I need coming up here soon as my husband will be working out of town and I need to go to work also. So this past weekend we had a “trial.” And in 100% honesty, it was not a trial for our babysitter….it was a trial for Caleb. And what I learned in hindsight was that it was a trial for me also. While Caleb’s been exposed to lots of different people, he’s never been left one-on-one with them. So I didn’t know how he would do. And while that can be said for any typically developing child….not just mine with Autism…..here are the extra challenges that come with trusting someone with my child without me being present:

  • Communication: As it stands, my child is largely non-verbal. Pre-verbal is likely more appropriate but his spontaneous vocabulary is limited and while his imitative vocabulary is improving daily, imitations can not answer questions such as “what do you want?” or “what’s wrong?”. And do you know what else is going against him? Those spontaneous productions he has are extremely apraxic….thus largely unintelligible to an unfamiliar communication partner. While we are starting to use AAC, that is new to Caleb (and my babysitter) and could likely cause more frustration than benefit by asking them to use it without proper training.
  • Social Skills: Deficits here are hallmarks of Autism Spectrum Disorder. I will admit that while Caleb has been rocking this skill set (to an extent) lately, I still have concerns such as his ability to take direction from someone who isn’t me, his flexibility in doing things a little differently than he’s used to, transitions, etc. If you’ve ever met a child with Autism, transitions are major. Consistency is imperative. So what happens if those things aren’t able to be replicated while he’s with someone else? Because as detail oriented as I am “all day erryday”, I will not remember to tell her everything.
  • Play: In this house, sometimes we use action figures to drive airplanes and ride t-rexes. But sometimes we like to line them up in descending order of size from tallest to shortest. Sometimes we build intricate multi-tiered towers with blocks, and sometimes we group them by color. Caleb’s cool with that. I’m cool with that. Is everybody cool with that, though?
  • Sensory needs: Yes, Caleb may climb to the top of the couch and crash into the cushions. That’s giving sensory input. Yes, Caleb may push that dining room chair across the floor. That’s heavy work. It’s also why I replaced the dining room light fixture with one flush to the ceiling versus one hanging three feet down by a cable. Absolutely Caleb may spin in a circle, giggling, until he collapses in dizziness like a rum-riddled pirate. It’s all good. My expectations when it comes to sensory seeking behaviors are pretty lax- stay safe and do not touch anything hanging on the walls. Bam. But if you’ve never seen a kid exhibiting sensory seeking behaviors, you may not know what to make of it.

About our trial……

Within the first 3 minutes of meeting the babysitter, Caleb walked up to her, took her hand and led her to the kitchen counter, placed her hand on a box of new 12 piece dinosaur puzzles, led her to the dining room table with those puzzles, sat her in a chair, then climbed onto the table with her. (Yes- ONTO the table, ya’ll. Pick yo’ battles). Ok… communication concerns obliterated because it’s pretty clear what he wanted there. Per her report, while we were gone, he decided to stand on the kitchen counters. (While I may be forgiving to a kid who wants to sit on my dining room table and play, I will at least say that counter top climbing has never been permissible….or ever even attempted by Caleb. But sometimes we test limits of new people to see what kind of ridiculousness we can get away with). So what did she do? Got him down, then chased him through the house playing monster. Dang, girl. Get’em. Sensory needs: met. Play skills: Caleb’s on it. After some wonderful monster chasing through my home, I learned that Caleb climbed onto her lap on the couch……onto her lap….not beside….not on a nearby chair….straight up on her lap….and fell asleep watching the Angry Birds movie. I didn’t even know he liked Angry Birds!!! Social skills conquered.

So, we were fortunate to find a good fit. I also learned that special needs parenting makes me worried all of the time. Especially when I’m not there. It makes me on Caleb like white on rice sometimes. It sometimes makes my default setting “expect and plan for the worst.” So, I learned, in hindsight, that our babysitting trial was for me too. It was for me to learn that if you prepare people properly, there is no need to consume myself with pessimistic assumptions. It was for me to realize that Caleb can do a lot more than I give him credit for, which I hope is at least a testament to the hard work we put into him. It was for me to learn to balance and to realize that aside from my strong personality traits of needing to control things and having a superior level of anxiety, other people can in fact do things as well as me, lol.

I’ll admit that there was one moment of panic. While we were out, I got a message that said “Hey Erin.” I replied with a cool, calm “Hey. What’s up?” but automatically went into an internal panic and immediately thought “forget a doggy bag- throw a $20 on the table and LET’S GO!”. Turns out, she only wanted to know if she could have a sparkling water from the fridge. Yes girl- have all of them!!!!!! Apparently I have a babysitter that not only rocks it with my kids, but whom is also abundantly polite, lol.

So, this is a game changer for my family. It means I can see my husband again more than just in passing. It means that I can use my PTO for a vacation, not to parent my own children. This. Changes. Everything.

I hope everyone is as fortunate as us in who they get to call a part of their tribe.

Love and Autism,

Erin

And then there was Mother’s Day

I was trying to think what I’d do today to honor Mother’s Day. My gut was to come up with something clever and witty and give you a laugh. Then, when it was midnight last night and I was still awake, the things that came into my mind to compose weren’t necessarily funny. Because one’s journey to motherhood isn’t always fun or ideal. So instead, I’ll just tell you my truth and what my journey has been so far.

Brian and I got married in January 2011. It feels like a lot longer than 6 and a half years, to be honest. We got married when we were barely 25 so we decided we’d wait a year or two before starting to expand our family. Baby fever set in quicker than I anticipated and as of 1/1/12 we decided our New Year plans would be to grow our family. By March I was pregnant and anticipating our first child to be born that December. I remember having a distinct thought about Christmas trees. Never again would there be a Christmas tree in our home that Santa Clause didn’t come visit and I thought that was the best thing ever. But those thoughts were dashed fairly quickly because somewhere around the 6-8 week mark I had a miscarriage. And it was one heck of a miscarriage. It started at the end of April and lasted until almost July. I miscarried for longer than I was ever pregnant for. And that’s how I spent Mother’s Day of 2012. Changing liners of what was supposed to be the first addition to our family and feeling sad. It’s very disheartening to have to go into the OB’s office every week for months to have hCG levels taken to see if they would continue to drop or if I’d need a D&C and to sit in the waiting room with happily pregnant people. I remember the day my levels came back a 3 and I was relieved it was finally over only to find that they were going to continue to make me come in until they were <1. I remember the nurse who took my blood that time exclaimed “for the love of God!” on my behalf.

But it finally ended and I took my OB’s advice and game my body the rest of July and August to recover and then yep- you guessed it- another positive pregnancy test in September. But, sadly, that didn’t last long either and I went through the same thing as just a couple short months earlier. But it happened sooner and lasted barely any time as the first one. I suppose my body knew I really couldn’t stand to draw it all out again.

October of 2012 was supposed to be a month dedicated to letting my body rest and recover. I remember my OB giving me a somewhat stern warning not to get pregnant immediately following a miscarriage as that made the miscarriage rate for the subsequent pregnancy higher. Maybe because the uterine lining isn’t very thick at that point…I’m unsure now what the medical specifics were but I remember that warning vividly. As it terrified me.

So naturally that meant that October would bring another positive pregnancy test. I truly didn’t mean for it to. I think my body had some crazy hormonal releases trying to reset and by Halloween weekend I realized I hadn’t had a period. It was a Saturday morning and Hurricane Sandy was preparing to blow through which was a big deal when we still lived in Norfolk. It was early….I took a pregnancy test not expecting anything because nothing was tried for and I let it sit in the bathroom for hours because I forgot about it. I finally remembered to go check it and there it was- 2 pink lines. But I had learned better than to get excited.

There was a lot at stake this time around because my OB had already educated me on the fact that 1 miscarriage was extremely common. 2 in a row wasn’t unheard of either. But 3 consecutive ones meant we had to do testing to see why my body couldn’t stay pregnant and that was a scary notion for me.

I won’t leave you hanging- that testing was never needed because the pregnancy of October 2012 resulted in one little Caleb Samsell being born 9 months later. But his pregnancy was not necessarily a thing of joy for me because I always had my guard up. I always assumed the worst. I’ve likely never been more terrified than at his first ultrasound as I just assumed there wouldn’t be anything there to show. I likely checked my pants for blood 50 times a day. It wasn’t until March- when I was 6 months pregnant- that I started getting excited because it took that long for me to finally accept “hey, this might work out after all.”

Not many people know those things. I think at the time it was just 2 supportive work friends, 1 compassionate supervisor, my mom, and my mother-in-law. People know those things now, years later, but not when they were happening. And I’ll be honest- I’m not exactly sure why. I don’t remember all of my emotional processing from that time but I think it likely boils down to lack of life experience and perspective. I’ve had a lot happen since then and would likely process things differently now.

Caleb was born in June 2013. I was pregnant with his sister by April 2014 and she was born in January 2015. So I’ve come a long way since my motherhood journey began in March 2012. I do not think about those miscarriages hardly ever, to be honest. And I hope that doesn’t offend anyone by making it seem as though I’ve trivialized the experiences because I haven’t. It still stings when I go to doctor’s visits and have to answer the question “how many pregnancies?” with “4” but the “how many living children” question with “two.” Mostly though, I know that Caleb Samsell is here because those back to back miscarriages happened, and there isn’t any possible way I could ever envision a universe in which he doesn’t exist.

So, wherever you are on your journey, Happy Mother’s Day. Hug your little ones a little tighter today, remember the ones who aren’t with you today but once were, and if you haven’t gotten there just yet, may it be all the more sweeter for you when you do.

Love and Motherhood,

Erin

Love in the Time of Autism

If you have a child that is typically developing, a child that does not have a social pragmatic disorder, a child that doesn’t have a speech and language delay……..how do you know they love you? I bet they tell you. I bet they show you in their craving of social engagement with you. I’m sure you see it in tiny gestures their big hearts make. So, as a parent of a child with Autism- a child who tries but is largely nonverbal, a child who’s social skills are severely impaired….a child who does not yet know empathy….how do I know he loves me? It’s there and I’ll be glad to tell you how I know. But first, let me tell you how I earned it.

Biology and bloodlines do not equate a child will automatically love someone. A child’s love is earned by individuals who provide stability, security, and comfort. By making a child feel safe, confident, and protected, you have put yourself on the right track of earning their adoring love and affection. That does not simply mean changing diapers and filling milk cups and ensuring they don’t run out into the middle of traffic will put you in an affectionate social standing with a little one. You have to engage. There are so many people I interact with on a daily basis that meet a basic need I have but that I don’t have a social rapport with….we don’t engage about anything other than a superficial exchange….thus, I have no love for them. I don’t dislike them, but I certainly don’t love them or miss them when they’re not there. You have to engage with a child to earn their genuine love and trust. You have to do things you don’t want to do when you don’t want to do them and forget that you’re tired or that you don’t feel well or you’d rather binge watch Netflix from the couch and engage with them. It takes time, effort, patience, and generally a few extra doses of caffeine throughout the day.

Now let me tell you about those things with a child with Autism. They take about a million times more time, effort, patience, and multiple espresso shots chased by a Red Bull to accomplish. Caleb does not typically seek us out to engage with unless he needs something. Thus, we have to make a conscious effort to stop what we’re doing, sit on the floor with him, and initiate an interest in what he’s doing. Caleb also had to be taught social games and exchanges. He did not instinctively know what to do with a ball when it was rolled to him. It took multiple adults and weeks of hand over hand for us to roll a ball back and forth to each other. That’s just rolling a ball, ya’ll. We got Candyland this weekend for his first board game….I’ll keep you updated how long it takes for us to understand the premise of that one. Do you know the patience that it takes to tell your child “I love you” literally hundreds of times and only hear it back in reciprocation about once every 50 attempts? If you ever do? Do you also know how sweet it is if you’re lucky enough to hear those sweet words uttered, no matter how apraxic the sounds in them may be?

The time, effort, and patience that we have spent the last almost 4 years investing in him have earned us cuddles, face squishes, ear flaps, the sharing of a cookie, an early morning crawl into bed, and lately, being invited to snuggle under a shared blanket. These are the ways my son lets me know he loves me.

While my relationship with my son grows stronger, I’m also noticing that distance is growing between him and other people he encounters. And I also know that this strain exists because he has Autism. It takes a lot more work to engage with him because initiating engagement, as well as maintaining it, doesn’t come naturally to him always. It’s harder to play with him because he doesn’t always play in typical ways. You can’t just ask him what he thinks about something because he can’t respond. What’s happening is that the extra time, effort, and patience involved with simply sometimes just being in his presence isn’t always something other people are willing to invest in him. And he’s beginning to become the odd man out sometimes.

There’s nothing that I can do to force anyone else to want to spend an hour on the floor with him even if it means that hour is silent and you group blocks according to color and then make a line of them descending in order by size and shape. I can’t force anyone off a couch and out of a patio chair and into his face and life, earning all the love this little boy has to give.  I can ensure, however, that my child is only put into situations where he is wanted.

I had a decent string of boyfriends in college and all of those relationships fizzled out for one trivial reason or another. But what I didn’t realize until recently is that despite that, I’ve never really experienced true heartbreak. Because what happened recently is that I saw my child treated negatively because of something he was born with that no one could help. And that is what it feels like to have your heart broken.

It was a difficult week as the parent of a child with special needs. But I hope that as a new week begins tomorrow, I can be a better role model for my son. I hope that he is never made to feel, no matter how many times he gets rejected in life, that “maybe this isn’t for me.” Every seven times he falls down, we’ll get up eight. I realize now, that it is my job to be the model of perseverance I hope becomes an integral part of who he is one day.

Love and Autism,

Erin

 

 

Choices, Opportunities, and Success

Choices, Opportunities, and Success

As the website grows so does the audience and reach of posts. We’ve also just received a lengthy communication disparaging everything Take That, Autism! stands for. While we will certainly not respond to all posts like this in the future, this provides a good opportunity to more specifically state what Take That, Autism! is about.

I wish my wife had saved the message she received as I would have posted it here for all to read but the gist of it was that Take That, Autism! is anti-autism and parents should not be providing any interventions to help their children succeed, especially by encouraging children to make eye contact with other people. Also, that my wife is too “neurotypical” to see how much these interventions damage children with autism. To channel my best friend from New Jersey, “Are you kidding me bro?!!”

Take That, Autism! is my wife’s creation and I cannot speak for her. Speaking only for myself, Take That, Autism! is about doing what any parents want to do for their children: providing our children as many opportunities as possible to succeed. I do not want my son to feel limited in his choices for success as an adult. If my son knows to make eye contact with others as an adult but chooses not to, that’s fine because he made that choice. If we don’t provide him tools for success in the form of interventions then we are severely limiting his choices as an adult. I want my son to have the choice of sitting in the boardroom of a Fortune 500 company, trying cases as a lawyer, or saving lives as a doctor. He can’t do these without making eye contact. We have a farm and I would be equally proud if he wanted to stay here and try to make a living off it. Even on a remote farm in the country, he’ll still be more successful selling cows, tomatoes, or grizzly bears if he can look a customer in the eye and give them a firm handshake. The same goes for virtually every way to make a living including electricians, entrepreneurs, welders, and hoteliers.

Lets note that I’m talking about reasonably attainable choices for an individual child. I’m not going to have my 3 year old practice golf for six hours each day to give him the choice of becoming a PGA pro. Similarly, autism is a wide spectrum and ultimate opportunities are going to vary for each child. For some, the goal may be any job at all that can provide some sort of satisfaction or semi-independence. It may even be just the ability to convey what food is desired for a meal or that a bathroom is needed. It is unbelievable that anyone could hold the viewpoint that parents are wrong to provide interventions that help children with autism tell their parents what they want to eat or that they have to use the bathroom. It is beyond me that some people are capable of thinking this way, let alone actively deride parents doing everything in their power to help their children have choices in life.

I could write a book about why this attitude is so wrong and damaging but let’s wrap this post up and maybe we’ll continue in another one day. To sum up, Take That, Autism! is about parents providing choices and the best opportunities for individual success for their children with autism. Whatever path in life they choose will ultimately be up to the child but we will do our best to provide them with as many options as possible. The choices and opportunities are going to differ for each child, and that’s okay, but we’re still going to do the best we can because our children deserve nothing less.

Brian

When Stuff Gets Real

When you’re dealing with the uncertainty of whether or not there is something different about your child, a security blanket exists when you’re the only one who knows. When you’re the only one who thinks it, the only one who sees anything wrong. It’s conflicting, really. I remember being frustrated that no one else saw what I saw in Caleb- that no one believed me when I first started saying “hey-something is wrong.” Simultaneously yet conflictingly, there was also security in that. That maybe my maternal hypersensitivity and eternally anxious nature, was simply worried over nothing.

But then there’s a moment when it all becomes real. Every family has that moment.

You’ve read my introduction post on everything that led up to us realizing Caleb had Autism. You’ve also read about how we redefined expectations and my husband’s perspective. Now, let me tell you about the moment when we hit the point of no return.

I’ve said before that I thought Caleb had difficulties hearing…was right….but knew that was simply one piece to about a thousand piece jigsaw puzzle. I knew he had Autism. I knew there was something more going on than a mild hearing delay that tubes would take care of but man did I leave that Audiology appointment some kind of UPSET.

I prefaced the whole appointment with, “I have developmental concerns but I think there’s something not quite 100% with his hearing also and he’s had chronic ear infections.” And Caleb sat there angelically playing blocks while the audiologist put the probe in his ears to do otoacoustic emissions testing. Completely and beautifully tolerant of it all. And then we tried sound field testing…..which was a disaster. He was young and unconditioned to what he was supposed to do so that’s not really a shocker. But it was….”off” still. He wasn’t responding to much, if any visual or auditory stimuli in the environment…..he started running around…..aimlessly. And when the appointment was over the audiologist told me she thought Caleb would benefit from tubes……and that she thought I was right to pursue developmental testing for him.

That’s all she said. It was simple, short, and casual. She never said Autism. I signed some forms and left with a pit in my stomach. Here I am, the pediatric speech pathologist, who’s been trying to convince everyone in Caleb’s life that he has Autism, who knew that he needed tubes but also another decade of intensive supports…..but when someone else who wasn’t me agreed that he needed a developmental assessment, everything suddenly became real. Someone else noticed that something was wrong and after months of thinking that I would feel so much better if someone else saw what I saw….when it actually happened, I suddenly felt sucker punched.

On that drive home I cried and used my defensive “you don’t know me or my child!” voice out loud to myself. My safety net had been pulled, and everything I was worried about was no longer a worry, but now my new reality.

I also resented her a little bit for giving me that moment. I shouldn’t have- she’s fantastic! If you need an Audiologist in the Greensboro area who’s great with children, she’s who you should 100% go see. But she was part of the moment that changed things for my family and I will openly confess, that I threw the first few brochures that came from her office immediately into the trash because it stung a little bit.

So, I understand if you get defensive the first time someone brings up developmental concerns to you abut your child. I also understand if you become annoyed when they bring them up again later. But I might also guess that it’s hitting you a little close to home because maybe you’ve felt those things too. It’s hard when stuff gets real but the acceptance of an unanticipated reality with our children is one of the greatest gifts we can give them.

Love and Autism,

Erin