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 ūüėČ ?

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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The Decision to Pursue AAC

I got a new car in April that came with 3 months free of XM radio which I’ve been listening to exclusively as I have a guilty pleasure sort of love for bad pop songs. King of guilty pleasure pop songs? Justin Bieber. Duh.

I’ve read enough Buzz Feed pop culture lists to know he’s turned out to be kind of a punk. (Did I just lose some die hard Beliebers as followers? It’s a blog. I say what I want). BUT….ever since “Baby, baby, baby, oh” came out I’ve been hooked on the kid, I’m not gonna lie.

So he’s got this song out called “Despacito.” I don’t know what that means but I know I’m obsessed with the song anyways (please don’t hold it against me as I would like to give the disclaimer that I have NOT looked up the English translation to the lyrics but DO know I can get down with that beat down). I’m listening to it and because I’m a mom and everything in one twisted way or another makes me think of my kids…I automatically start bawling on the way to work and crying out loud that “Caleb is never going to speak Spanish.”

What? What WAS that? Who DOES that? For whatever reason, when The Biebs started singing Despacito in Spanish, I became so incredibly sad because I had this defeat flash before me that Caleb would never sing whatever inappropriate lyrics he was singing in a foreign language. Ok, ok, I know my meltdown is clearly representative of a bigger picture- a picture that when painted looks something like I don’t feel as confident about our verbal prognosis as I did this time last year. Because now we’re almost four…..and we do not have language that is functional enough to be utilized without any other communication modality in conjunction. And if we barely have English, and I don’t know when we’ll get it, is there the potential for us to ever have anything else with it?

I remember when I was pregnant with Caleb I was visiting my best friend in Alabama who was pregnant at the same time with her daughter. There was a very distinct conversation I remember having at this fair trade coffee shop over bagels and lattes about how I wanted Caleb to learn Mandarin because no matter what life and educational decisions he made, he could always make bank being hired as a consultant to business firms, banks, etc. interpreting for Hong Kong businessmen affiliates. She called me out on my Tiger Mom moment, told me I was cray- cause I was- and I hadn’t thought about it in years.

Until Despacito. I think what has been happening lately is that I’ve become resentful. Not towards Autism- I found acceptance awhile ago with that. But I maybe have been having a pity party about the fact that this incredibly intelligent, affectionate child not only has a developmental disorder that severely impairs his verbal communication but he ALSO has a neurologically based motor planning speech disorder so even when Autism wants to stand down sometimes and give this child his voice, Apraxia pops up all “Hold my beer- I’ll see about this…” and makes it¬†almost physically impossible¬†for my child to speak.

The pediatric speech pathologist who has the quietest kid on the block. The irony is painful.

Ok….even after that angry outburst and “woe is me” moment…I still have a good handle on optimism and acknowledgement of the fact that he is¬†too young¬†for me to know what he’ll be doing a decade from now. My highest of hopes is that he’ll be reading this and say “Mom, you’ve always been a spaz, haven’t you?” and that he’ll say it in whatever language he dang well chooses. But, until we get there- until we reach the point of crooning to young ladies on the other side of the mountain by singing an acoustic cover of Despacito (which will be on the oldies station)- we’re going to let a communication app help us tell our story. Because this kid has too much to say to not have functional access to a voice- even if it’s a modulated one for now. And he can’t be denied the right to that because I’m a crazy lady who cries about if he’s gonna be conducting international business deals in China or not. Like…really, Erin?

But, there it is for you. An open and honest (and partially irrational) Autism fear laid out for you. I know you have them too. And I promise you- whatever it is- you’ll get zero judgement here about it.

And Justin- if all the moons and stars collide and the universe sends this your way and you one day find yourself reading this, know that you helped me help my son find his way in the world for now. Because that day your song came on my trial XM, during a peaceful morning drive into Patrick County where I was the only one on the road, my heart opened up enough to realize the decision I needed to make for my son. 3 minutes and 49 seconds of your pop hit made me certain that it was time for AAC. And helped me remember to take my own advice and remember that there is no defeat when we redefine our expectations.

Caleb- if it’s 10 years from now, I hope you’re reading this in whatever communication modality you’ve found works best for you and that you’ve grown up to be whatever you want. Except for Justin Bieber. If you’re gonna be a Justin, Timberlake is 100% the way to go. ūüėČ

Love and Autism,

Erin

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 ūüôā 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

Peer Interactions and Autism

While it may not be terribly evident in how he interacts with his sister sometimes, Caleb does in fact LOVE other children. I found that this is typically true out and about in the community though and not so much on his home turf. When someone has come over to play here he tends to continue to want to do his own thing but will tolerate another child doing their thing too. But he seems to know that when we go out and about, that that is EVERYONE’S turf and he is consistently so much more social. Add that to the list of why it’s imperative to get Out and About with your child.

Here are some tips for helping children interact and communicate with children with Autism in inclusive settings. Be it school, home, a pumpkin patch, the grocery store- it all applies!

1.) Teach them about non-verbal communication.

Saying words is not the only way people communicate. Children with Autism may use gestures, point, or even want to lead another child somewhere to show them something they would like to do. Let your child know that this is the same as when they use their words to tell you something. Using pictures or a speech generating communication device is also the same as your child using their voice to some children with Autism. Caleb is going to start using AAC and I’m excited to help encourage him to use it with other kids when we go out!

2) Help them try to be patient.

The mixed language delays and auditory processing difficulties so frequently found in children with Autism can make it difficult for them to process verbal information without visual support. Help your child be patient in saying something another way, demonstrating an example, showing a visual, or simply allowing more processing time for a response.

3) Pre-teach. 

Children with Autism may have sensory processing deficits that make them sensitive to certain sounds, textures, smells, etc. Or these sensory needs may manifest themselves in sensory seeking tendencies such as excessive movement, heavy work seeking, etc. Explain to your child that another child may have trouble with loud noises or need to have opportunities for lots of movement and relate it back to them having something they don’t like or a way they prefer to do things. Kids are smart and pretty empathetic little creatures if you give them the information and an opportunity.

4) Let them know they’re acknowledged…even when they think they’re not.

Let your child know that kids with Autism sometimes have difficulty with eye contact. It may be hard for them to understand that if someone isn’t looking at them, that they’re still listening and still want to engage with them. Children with Autism will also sometimes look towards a communication partner’s face but maybe not directly in their eyes. Often, they are looking at a speaker’s mouth as it helps them by providing a visual cue to what’s being said to help them process information.

 

Now I want to share some “Did You Knows?” with you about interactions between children with Autism and typically developing peers:

РPeer Mediated Instruction and Intervention (PMII) is an evidence-based practice for children with Autism.

– PMII programs benefit children with Autism in generalizing social skills they learn in school and therapy to real world settings.

– They also benefit typically developing children by increasing tolerance of peers which can lead to a reduction in bullying.

(Source: Indiana Resource Center for Autism)

 

If you have the opportunity to let your child play and interact with a child with Autism, take it. If you live near me and are looking for an opportunity….it’s coming your way ūüėČ As always, lead your child by example. If you demonstrate patience, tolerance, and acceptance, your child won’t be far behind.

Love and Autism,

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

 

 

Apraxia and Autism: Where to Start

Because I think I’m generally hilarious, I decided that an unofficial subcategory of “Take That, Autism!” shall be “In Your Face, Apraxia!” because we’ve got more than one challenge on our plate.

I’ve talked to you about what Childhood Apraxia of Speech is and incidence rates of it in children with Autism here. Now, I want to tell you about what we’ve been working on and how to prepare ourselves for “true” intervention for apraxia.

Caleb says so many things that aren’t jargon, but true productions that are just¬†that unintelligible.¬†Because apraxia. Apraxia makes vowels beastly to form, consonants the trickiest of the tricksters, and then when you go to put those Consonants and Vowels into various¬†CV, VC, CVCV, CVC,¬†etc. sound combinations it all can become a very¬†“say what?”¬†situation. And that’s when you’re able to imitate things verbally on a 1:1 compliant ratio. But what about when you have Autism and are 3 and your verbal skills are just starting to develop and your ratio of imitating a single word is more of a 20:1 input/output ratio? And that’s just to maybe label…..NOT to produce specific sounds in specific sound patterns.

But your child wants to try. You can tell. They¬†want¬†to try to say more things. Where do you start? Here’s where we’re at.

Imitation Hierarchy

There are sooooo many things kids imitate before they imitate at the word level. Here’s the breakdown:

РGross Motor Movements (jumping, kicking, etc. and then expanding to movements with objects such as rolling cars)

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Fine Motor Movements (clapping, motions to songs, playing with small objects and tools, etc.)

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РOral Motor Movements (blowing, sticking out tongue, kisses, etc.)

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–¬†Imitation of nonsense or environmental sounds¬†(moo, vroom, etc.)

– Imitation of single sounds and simple words

I could not expect Caleb to say “car” if he wasn’t rolling a car across the floor or knew that it went “vroom.” And this hierarchy is not profound. It’s typical language development, really. The difference is that in typically developing kids, the first 4 steps usually don’t need to be “taught”. You probably don’t know when your child started imitating actions, play, animal sounds, etc. because they¬†just kind of did it. Everything with Autism takes more work , more time, and a lot of times formal intervention to learn. Caleb did not imitate rolling a ball. It was taught. He didn’t start imitating motions to songs until last summer right before he turned 3. And it took a lot of watching YouTube song videos and hand-over-hand until he knew his own head, shoulders, knees, and toes. You can’t just look at Caleb and say “stick out your tongue”. It has to be this very elaborate back and forth in front of a mirror where ridiculous faces are made and you will ultimately end up getting lizard licked. Right now we’re teeter tottering between imitating nonsense sounds, single sounds, and 1 syllable words. Caleb can do some solid “ahhhhhhh”, “eeeeeee”, “oooooo” imitations to practice vowels and early developing consonants are coming through, but we are not ready to imitate sounds at the word level. We’ll get there, but it’s a marathon, not a sprint.

I wanted to review a solid imitation hierarchy because when we have 4, 5, 6, year olds who are not yet talking it can be very instinctive to just throw words at them and hope they stick. But imitation of movements, actions, and sounds are a crucial part of development. And if those skills didn’t develop, they need to go back and be addressed and facilitated. That does not mean; however, that you should not work on talking about all of the things all of the time. While you’re working on learning actions,¬†talk¬†about them.¬†When you’re playing trucks,¬†make truck sounds.¬†You’ll get some back sometimes and that’s awesome. You don’t want to walk before you crawl. And I know parents get jazzed and bragged “my child didn’t crawl, they went straight to walking and walk just fine!” but I promise you don’t want that. Yes, maybe they’re walking now but if they never learned that crawling step, there could be implications one day of never having learned the proper skills needed for appropriate visual-spatial recognition, motor coordination leading to good handwriting, and a host of other things (which is a whole other post for a whole other day). Same principle applies here. Imitating actions contributes to increased attention to task, appropriate play development, improved eye contact and social interaction, etc. Do you want to skip straight to talking and skip all those other important developmental milestones? Probably not. No matter what your child’s age, it’s never too late to go back and start working on those skills.

Please stay tuned for future updates on Caleb and our Apraxia-Autism interventions (that will challenge mommy’s creativity and ingenuity) as we find the strategies and approaches that he’s going to respond best to. Thanks for being a part of our journey.

Love, Autism, and Apraxia, everybody. Here’s to the feeling of satisfaction we’ll have when we end up where we’re going to end up and the patience for us to hold on tight until we do.

Erin

Haircutting Tips and Tricks

Haircutting Tips and Tricks

Krystal Showers MSOS, OTR/L

Haircutting is one of the most difficult routines for children, especially boys, with autism. It is consistently an area that parents mention is so difficult for them, and a nightmare for their children. When we stop and break it down, it is easier to understand why this routine in particular sends so many households into panic. Families literally plan out haircutting day/ night, recruit support via extra hands and bodies to help, amp themselves up for what it means with meltdowns, and prepare to deal with a half-buzzed head for a while if need be!

Let’s look at haircutting from a sensory processing perspective first before we get into some tips and tricks!

Auditory

This is the big one for our friends with autism. I had one child describe the sound of high pitched noises, like the buzz of clippers, as ‚Äúa sharp needle that stabs all the way into my brain‚ÄĚ. Think- how would you like that right up next to your ears, let alone tolerate it for a good 15-20 minutes without becoming upset! Children with autism often have very sensitive hearing and can have difficulty filtering out noises. The sound of clippers can be unnerving, especially in a barber shop where there may be more than one pair going at a time or multiple people talking at the same time.

Tactile

Haircutting involves vibration tactile input which may be aversive to the child. What we may consider as a ‚Äútickling‚ÄĚ sensation from the vibration, may actually feel like sandpaper or pins and needles. Even if you are using regular scissors, the light touch of their hair falling on their neck or skin can feel painful and like they are being stabbed with each tiny hair.

Movement/vestibular

Many children with autism have a high need for movement. Sitting still in a seat for a haircut can be very difficult. For children whose vestibular or movement sense is very poor, sitting still can be almost impossible as they crave movement as a basic need….just like food when you are really hungry!

Smell

If your child is getting their hair cut in a salon or barber shop there can be a LOT of smells in one small space. Children with autism can have a very sensitive sense of smell and can respond negatively to smells that others may not notice or be bothered by. With all the different people, shampoos, conditioners, dyes, etc., it can be a lot to take in!

How to make this routine easier for you and your child!

Auditory Strategies

  • Use scissors to cut hair rather than clippers
  • Provide headphones and music the child can control to help block out clipper sounds
  • Try haircuts at home or during very slow times of the day at a barber shop to decrease the amount of sounds in their environment

Tactile

  • If you have been trained in the Deep Touch Pressure Protocol by your occupational therapist doing the brushing protocol prior to haircuts will help your child stay calm and decrease some of the sensitivity to touch
  • Try to cover ALL the skin that stray hairs could land on using a towel or smock
  • Let the child experience the vibration from clippers on their hands first (ie: let them hold the clippers without the blade on so they can feel and get used to the vibration
  • Before starting, provide some deep squeezes to the child‚Äôs head (like a firm head massage) moving down to shoulders and arms as well to help prepare the child and give some calming input

Movement

  • Use a move-n-sit cushion during haircutting so they child is able to get some movement but still stay in their seat
  • Engage in intense swinging, spinning or bouncing prior to asking the child to sit for a haircut
  • Take short movement breaks to stand and jump and then sit back down

Smell

  • Try haircuts at home or during very slow times of the day to limit the number of extra smells the child is exposed to
  • Bring a small cloth with a favorite smell on it (ie: lavender or peppermint essential oils) for the child to hold up to their nose when the other smells become overwhelming

¬†Here’s a video of Caleb getting his hair cut. Check out his sweet cape!

Caleb gets super duper fly.

And here’s a video of Caleb cutting daddy’s hair!

Daddy’s gets what he dishes out.¬†