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

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:

– Peer 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 😉 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