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How do I protect my son from his skin?

The world is fighting CovID-19 and black people are fighting to stay alive. Black men in particular are being murdered and threatened for no reason at all, other than being black. Black families are having hard necessary conversations with their children, even if you don’t want to or feel as though they’re too young it’s being forced on us due to the daily news reports. We are literally getting no days off from the trauma.

Caleb had a speech evaluation yesterday and he scored below average on the language comprehension section. I already knew this was an issue. Caleb speaks pretty clearly and has the words but he struggles with the use of language both understanding, comprehending, and engaging in conversation. As the SLP provided me with this information I immediately thought.

How will I protect my son from this world?

His progress has been staggering but I don’t put expectations on Caleb. He will get therapy, we will continue to work hard, I will never stop advocating for him BUT he is autistic. He is a black autistic man in America and he needs to be protected. He may not always have a speech delay but he might. I always prepare for “the might” but I feel stuck on what that looks like when it comes to this. Within the last month, let’s start there for the sake of time, a young man was lynched on a GA street by 3 white men for jogging in their neighborhood, a young woman gunned down by police in her bed based on false information, another young man who served this country was chased and gunned down by police, George Floyd was murdered by police on camera for writing a bad check, and in Central Park, a black man was bird watching when his day was interrupted by a white woman calling the cops and falsely stating that “an African American man is threatening me” knowing his life could’ve been changed/taken forever.

I am in quite a few autism groups online and only in the Black Autism Moms group are we having to discuss topics like:

“How do we prepare our kids for the police?”

“How do we tell them the police are supposed to keep them safe when we know that’s not what they’ve been doing?”

Leaving your home and returning safely is not necessarily guaranteed if you were born with melanin-rich skin. If you’re reading this and you think this shouldn’t be a concern for someone who’s son is only 4 years and 11 months old, you’re right. It shouldn’t be a concern, but Caleb will always be black and he will become a black man and the history of this country shows us that racism continues to be alive and well, some days it even appears to be thriving, so although you are correct in thinking I shouldn’t be concerned the reality is I need to be. I need to be concerned and enraged and scared and frustrated because my son fits the description of the people being hunted and murdered in this country and if that’s not bad enough, I don’t know how to prepare him.

How will I protect my son from his skin?

I see families “preparing” their children for what’s happening in this country. They are having hard conversations with kids who should just be free to be kids. They’re telling their children to do whatever they need to in order to make it home alive, right or wrong, do what they say. Just make it home alive!

Let me be clear, I’m not here writing about the right or wrong message to teach your kids. My point is that these conversations are happening and my reality is that I can’t have those conversations. I don’t know if Caleb will ever understand the conversation. Hell, it’s confusing to me, I don’t understand the conversation.

People will not like you and will fear you because you are black. Police are supposed to protect you but they may not because you are black. The way you speak and your stimming may make people uncomfortable and fearful, but mostly because you are black.

How will I protect my son from his skin?

I don’t have the answer, I’m not sure I ever will. What I am learning each day is that it’s not my responsibility to end racism. That responsibility will fall upon the white people in my life and in this country who claim to love everyone, despite the color of their skin, and believe in equality.

To my white friends, co-workers, followers, allies…..What will you do to protect my son?

It takes a village to raise a child

Being raised by a single working mom, I remember always having extended family around. Aunts and cousins either lived with us or I was at their houses, there was never a need for a babysitter.
Now that I’m a single working mother raising a child with limited family around, It has been a challenge creating this village for my own son. I have zero experience with “babysitters” and the concept of a stranger caring for your child alone in your home is foreign to me.
 
Am I supposed to let some High School senior watch my child? Unattended? That doesn’t seem reasonable. Caleb has autism and special needs. Do you watch the news? Do you see how teachers in schools filled with people treat children like him?
These are the internal conversations plaguing me when I even considered getting outside help. And then there were the external conversations I had with his Gemma.
“People are crazy Tiffany. Not my grandson. I’m not comfortable with that.”
Caleb’s laundry list of dos and don’t and what if’s would send any stranger running for the hills. Would I ever be able to leave the house alone again? A brunch? A girl’s night? Happy Hour? It didn’t seem possible. My mom, the only other person who knows Caleb like I do, is equally exhausted and she needs a break too. She’d power through this life and never leave the house again though for her grand-baby. I couldn’t live like that. Does that make me a bad mother? He was my son. My responsibility. I’d partied like a rockstar long enough maybe I did just need to sit my ass down somewhere. If I leave the house would the guilt even allow me to enjoy myself?
I’d somewhat settled on the fact that maybe he was too young to be left with someone I didn’t know and that maybe once his communication improved, I would attempt to get him a sitter occasionally. It was around that time that I found an Instagram called A Single Black Motherhood. A network of single moms across the country who could connect and relate, and from that I met a woman right here in Tampa.
It was through this woman that I realized I deserved to be more than a mom. She was hosting a brunch and I had to attend. I also needed to be there without guilt. I wanted to enjoy myself. I needed to find a sitter. At that moment I downloaded a babysitting app. I searched for the terms “special needs” and “autism”. Not much came up except for maybe a vague footnote about additional fees. There were dozens of profiles to choose from. I remember thinking “This is worst then the dating apps” and my ability to choose correctly on those left me with little confidence in choosing a suitable babysitter. What if Caleb didn’t take to her? Could she handle his shenanigans if he was upset that I’d left? Gemma had already said she was NOT leaving the house but I just wanted her to be a fly on the wall.
That’s when I came across an Instagram friend talking about date night with her husband and using DOUBLEMINT SITTING to watch their two little girls. I immediately went to their IG, the website, searched reviews, etc… As I hit the drop-down menu, I was shocked in between Overnight and Pet sitting was a separate option for special needs. I sent in an application right away! It was thorough and I liked that. If they were screening me I knew they were screening the sitters.
The ladies of DoubleMint sitting responded almost right away. They answered my questions and emails with no hesitation. In the days before my brunch, they provided me with my sitter options, including pictures and their back story experience, etc… I chose the older of the two. In my mind that meant more experience..lol. I asked about whether I needed to have activities or games and the young lady coming to stay quickly advised she would have a bag of goodies for them to have a good time. We always communicated via text with myself, the sitter and the owners. They had a rule not to communicate with the sitter directly and I liked that. They had everyone’s safety in mind.
Fast forward to the day of, our sitter was on time and all smiles. Caleb took to her almost right away, she sent me pictures throughout their time together to reassure me that all was well. I was out, having a good time, guilt-free! This was a big step for me and a bigger step for Caleb. They watched TV, he climbed all over her and ate her snack she’d brought for herself. He asked about his sitter in the following days and wanted to know when she’d be back. Financially, a babysitter isn’t always an option when I want to go out but DoubleMint sitting made a lasting impression on both of us and I’d definitely consider their team part of our village. Caleb and I can’t wait for future playdates. It looks my mama may be able to get out and about on occasion after all!

‘Tis the Season

As I reflect just on the last year alone the holiday season for us has been so drastically different. Last year at Thanksgiving Caleb was almost 3.5 and we were hyper-aware of the holiday festivities being newly diagnosed. We’d researched how to prepare him and considered all of the recommendations. We opted out of going to see family for both Thanksgiving and rather had family over, hoping Caleb would be better off in his own home if we had to be around people we didn’t see too much throughout the year. It didn’t work out as planned and Caleb spent a good portion of thanksgiving in our room having a meltdown and barely ate. This year, however, was different! I explained that we were going to see cousins. He has a better sense of family now and he LOVES his family. We were going to see my 3 pre-teen cousins who adored him and who he lovely referred to as “the girls” and he couldn’t wait. He still didn’t eat much but he ran through my grandmother’s house the whole time squealing and giggly, clutching his ipad for comfort mostly, but he didn’t want the day to end. It was then I realized what a year had made.

 When it came to Christmas, last year, we went to brunch at my grandmother’s house and didn’t stay too long. Caleb wasn’t a fan of Christmas he didn’t seem to grasp the concept of Santa, gift exchange and he definitely didn’t like the idea of a tree in the house. In fact, for the last 2 Christmas’ (when he was 2.5 and 3.5) he was insistent that “tree outside”. He hadn’t been speaking much but that much he did know, that trees go outside! We’d even purchased a small Charlie Brown tree, about his height on the floor but could also sit on a table, and that was unacceptable. My poor Christmas loving mother who’d gone all out every Christmas since I was a child was devastated. Gemma was not a fake tree kind of girl and definitely not a tabletop tree, but as she had done for the past 3.5 years she made accommodations for her grandbaby.  For those new a mama bear and her cub, Gemma is my mom who lives with Caleb and I full time to help me through this single autism mom journey.

So last year our little Charlie Brown tree sat out on the patio, with a few lights. We tried hanging garland around the house with little success. He just wasn’t responsive to any of it. To try to get him into the spirit we attended the local tree lighting at the outdoor mall in our area. The trees light up to the sounds of Christmas carols and fake snow is blown from machines (we live in Florida) it’s a whole experience. An experience Caleb didn’t appreciate AT ALL. We were there for 3 minutes, it literally took me longer to find parking. I was defeated that evening and went home to tell mom Christmas of 2018 was canceled. As you can imagine, I had little hope for Christmas of 2019 but the change in Caleb from one Thanksgiving to another had me a little hopeful. I had friends here from out of town the week before thanksgiving and we started mentioning Christmas then. 

“Caleb are you going to have a Christmas tree this year?” she asked

“Christmas tree?! YES!!!” he exclaimed

At that moment, in those 3 little words, there was hope! I jokingly told mom we better put the tree up. I didn’t care if it stayed bare until Christmas Eve if we could keep it up. Hell just get it into the house, we could have some real progress. Over the next few days as my friends visited we mentioned the tree and each time the answer was the same “Yes!” Finally, we went for it. We had mom dig out the tree one day when he was at school. We all waited for him to get home to see if the reaction would be the same actually seeing the Christmas tree. Yes, it was the same Charlie Brown tabletop tree but who cares!! That day Caleb came in from school and we all waited. In true Caleb fashion he looked, he smiled, and then he said,

“IT NEEDS A STAR!”

WOOHOOO! Christmas was back! Our little tree didn’t get decorated much initially, we put some lights on and we pulled out the star but we were still playing it by ear day-to-day. As the days went on, Caleb started asking for the lights to be turned on as soon as the sunset outside. “3, 2, 1 LIGHTS!” he would exclaim as Gemma happily lit up her little tree. With Christmas now 6 days away our little apartment is fully engulfed in Christmas. The tree is decorated with lights and ornaments. Reindeer surround the foot of the tree on the table along with a small Christmas village. There is garland around the doorway, lights and stockings hang from the breakfast bar. The patio has lights and Gemma’s prized possessions an African American Mr. & Mrs. Claus that move and light up were the last of the décor to make an appearance. Thanks to his great teachers at school Caleb often comes home singing a new Christmas Carol and his favorite 12 days of Christmas is now part of his bedtime routine. And last but not least (Caleb’s favorite catchphrase) we have a countdown to Christmas calendar because he has requested that Santa bring him a Thomas and Friends Super Station.

This season I am grateful for growth, hard-work, patience, and grace. Every day is a conscious effort. Some days we fail miserably. This holiday season, however, has been a win. I don’t know what next year will bring, I don’t know what tomorrow will bring but at this moment I’m grateful.

Happy Holidays!

No Child Left behind

It is November and the first progress reports have been sent home and parent-teacher conferences have happened. Caleb is adjusting well to 5 days a week of Pre-K, his speech has improved, we are using sentences with 3-4 words and answering some Yes and No questions without prompts and I definitely see the growth from last year. His teachers and I both agree that we have to continue working on independence. He sticks to them like glue and gets jealous of the younger kids. At home, he sticks to me like glue, and before you ask “yes he is still in my bed!!” (A story for another day when I get caught up on our summer ‘19 adventures)

Somehow, I’ve blinked and we went from 0 to kindergarten! I can feel literally feel Kindergarten breathing down my neck. And it smells like large classes, less support and both mama and baby crying every morning. Maybe I’m wrong, right? After all, we have 7 more months, and the progress we’ve made in the last 7 months has been astounding.

With that being said, I really need to start working on preparation for kindergarten. Caleb’s current elementary school is all about inclusion and their kindergarten class is an integrated class, this means Caleb will be in class with other 5-6 year old without disabilities or delays. The thought of this has led me down the dark tunnel I have worked long and hard to avoid, the comparison tunnel. (The space where I am looking at other children Caleb’s age and comparing what they can do and what he hasn’t started doing yet.) I’ve started stressing over his delay in writing, will his new teachers understand his language, is he ready for an integrated class, will we have to consider an alternative school, will he be ready to do homework.

Holy crap! I hear there is so much homework!

What if his little buddies are ready for kindergarten? Will they move on and leave him “behind”?

To combat my anxiety, I’d already gone out and purchased kindergarten prep workbooks, we’d spend an hour or so on these with me frustrated and him whining and fighting. I also purchased the same pencils they use at school and ABA, I’ve emailed his caseworker at ABA and asked to make handwriting a priority in his programs, sight words have been printed and placed on the walls in the house and then right before I made a call to see if I should enroll him for additional occupational therapy I gave myself a reality check. (But not before blaming myself for not doing this sooner, because let’s face it…Mom Guilt takes no days off)

What am I doing?!? And Who are you doing this for? Is this for Caleb or is this for you? For your pride? Your ego maybe? Where is the gratitude for the progress? Do you remember where you guys were 7 months ago and now, you’re in a panic about 7 months into the future? This is after all the definition of ASD. There are delays. He learns differently. He isn’t like everyone else. And that’s ok….I thought I’d made peace with this. (Or had I only accepted it when he was with other kids who were like him?)

These are the questions I had to stop and ask myself because with my personality there is a slippery slope between preparation and panic. Preparation, planning and patience is what Caleb needs to thrive. Panic and pity parties don’t serve either of us and just make for wasted time. I knew how to advocate, research and be a voice for Caleb. His teachers actually made not of that in our meeting. She said “I’m not worried about Caleb getting what he needs next year, he has an advocate. YOU! And I will also make sure he has what he needs from my end.” Why couldn’t we just stay in Miss Molly’s happy world forever and ever??

Somehow, I’d let this thought of “being left behind” creep in and I have no idea where it even came from. This was Kindergarten and although there was work to be done. There was always work to be done. That was lesson #1 when this bomb dropped down on us. There will always be work to do and that should be the focus. Our work, our journey, our path which will always look slightly different than anyone else’s.

Kindergarten will be different and maybe 1st grade too.

Middle school will be another transition and High School for sure.

There will probably be a handful of other transitions in between, maybe new schools, definitely new teachers, and absolutely new friends.

The consistency will always need to be ME and the advocacy for what’s best for Caleb, therefore there was no time for panic…only preparation. There will be no child left behind because there is no race.

Continue reading “No Child Left behind”

FOUR EVER WILD

To my Caleb:

We made it to 4 baby boy!! It is always my honor and privilege to be your mama for each revolution around the sun but let’s be honest…it’s also been hard as heck and the most challenging thing I’ve ever had to do. (You know they didn’t give mama any instructions when they sent me home with you) Lucky for you though you’ve chosen a mama who doesn’t shy away from challenges and I think you’ve learned that already. In fact, you’ve got a lot of that in you already too.

You really showed autism who was boss this last year. You’ve grown so much socially and developmentally. We know you have more work to do and you work so hard every day with so many different people trying to show you the ways of the world. Sometimes I watch you at night and think about how exhausted you must be. So many things going on in that brain, so many lessons and tasks you’re expected to remember and learn, it’s no wonder you talk in your sleep. Yet every morning you still wake up with a smile, “Hello Maman!” (my favorite words) ready and excited to start a new day. Ready and excited to see “teachers” and “friends”; just ready to face every challenge head on. You strolled into your first year of pre-k reserved and cautious and came through the other side a confident little chatter box. You persevered and even got an award to prove it!

You never cease to amaze me, especially when you make up your mind in 5 short days that you would master potty training. Most days I laugh and think that even if they had a child instruction manual it wouldn’t apply to you anyway. LOL You’re so silly and funny. You’re exclamations of “OH MY GOODNEST!” make me laugh every time. Your version of hide-n-seek that involves no hiding at all. We have the best times laughing with each other. You’ve really tapped into that imagination this year, making up your own stories and narratives. 

My sweet boy, you are also the most determined and brave person I know. You walk into new surroundings always with your head held high despite your language delay and your difficulty communicating your needs. You never let that stop you! Just a few weeks ago summer school started and you walked into the new school, with new teachers and new faces and never looked back! You teach me so many lessons being your mom, not just the usual like patience and unconditional love but mostly about facing fears and managing anxieties.

Even on days when you’re the most toddlery toddler ever and we’re dealing with rebellion, mischief, tantrums, and meltdowns, I’m completely obsessed with you. You’re a super duper mamas boy and I know a time will come when we should be less dependent on each other (in fact the time has probably come and gone) but I love our bond. We have our messy days and our messier days but the truth is that’s where the Magic is. Our magic is in the mess because we always come out the other side bruised but never broken and everyone knows bruises heal baby boy. Whenever you feel overwhelmed you always ask mama “to hold my hand” and I want you to know that I always will. Not just in the midst of meltdowns but in celebrations as well.

Today and every day I hope you feel all the love that’s poured into you daily from near and far. I pray you’ll always know how many people prayed for you. I have no doubt that after God made you for me our ancestors all prayed over you before you came through me 4 years ago and because of that you will be forever blessed and favored.

My biggest prayer for you remains the same Caleb Ashton, that you will always do your best and be your best even when nobody is watching, be mindful of your manners (Please and Thank you is not a trend), respect yourself first and foremost, be kind to people even if they aren’t kind to you. STAND up for what’s right. KNEEL down and pray when you’re not sure what that is.

Happy 4th birthday Angel baby!

With endless love,
Mama

Autism Awareness

So unless you live under a rock and/or don’t follow my social media pages, you should be aware that April is World Autism Awareness Month and yesterday, April 2nd, was World Autism Awareness Day!

I spent a lot of time yesterday accepting and receiving an outpouring of love from family, friends and complete strangers but I also found myself super emotional throughout the day as well and I couldn’t understand why. I don’t spend much time crying or complaining about our circumstances. What good does it do? To know me is to know I don’t do much complaining about anything. I typically focus in on how to change/adapt and do what I have to do. Living with autism hasn’t changed that. In fact, it’s made me more of a go-getter. I am always thinking about what Caleb needs to live up to his full potential. I am constantly researching. Caleb is a vibrant, brilliant, funny, charismatic little boy with a devilish grin and a killer smile and it’s my honor to be his mom! So why was I so emotional yesterday?

Over the past few weeks, I’ve been working really hard on this clothing line for A Mama Bear and her Cub as well as other projects geared towards acceptance so I believe that in all my attempts to raise awareness and acceptance I’ve become hyper-aware of what we deal with from day-to-day.

Normally, I spend my days and nights in overdrive mama mode doing what needs to be done so Autism is not typically at the forefront of my brain, if at all. Autism only appears in flashes throughout our day-to-day. It’s not there when I’m making meals, doing laundry, cleaning up, ironing uniforms, prepping for bath time, reading Green, Eggs, and Ham. Or is it? Afterall it has only been 1 year.

However, it’s days like yesterday when I get phone calls, texts and direct messages expressing support, that I then become aware. Autism is there all the time. It is there when I’m making meals because dinner time typically consists of a meal for him and a meal for myself. It is there at bath time because the water temperature has to be jussssst right, his sensitive skin soap is present, and EVERY “bath time” toy has to be accounted for and it’s even there when it’s time to read Green, Eggs & Ham TWICE! (Never once)

Have you guys ever noticed how long that book is for a children’s book?! Like Seriously Dr.Seuss!

The emotions are there every time I have to stop and think about it. As long as I keep moving and pushing there is no time for emotions. Yesterday I let them come up for a little while and then it was back to the grind. Back to figuring out what I could get him to try for dinner, back to researching sensory activities for the weekend, back to being a mom with a side of Autism. I took my time to be aware, accept and move on.

My hope is that whether you are only aware on April 2nd or for the month of April that you all continue to be accepting. Don’t always assume its a temper tantrum. Don’t always assume the child is being bad. Don’t always assume that he/she is rude or doesn’t have any manners. Be aware that things aren’t always as they seem.

New Year New Us…Kinda

I know I know it’s practically the first quarter of 2019 and here I come acting like we haven’t completely fallen off the grid.

Sorry ya’ll!!

Mama’s been movin’ and shakin’ and trying to get life in order. I don’t usually make new year resolutions but this year I’ve been inspired by so many people and things that the need, the desire, the drive to level up and live my best life has just been overwhelming. There’s this nagging voice inside constantly asking “how do you want Caleb to live?” I know too many people who have worked their asses off for a long time with not much to show for it. I want Caleb to look around and see differently starting with me.

On the other hand, I’ve also been toddler wrangling. Caleb is almost 4 and busier than ever! I’ve got 2 eyes, 2 hands and 2 feet on him at all times and yet I still can’t tell you how or when he sprained his ankle. He’s a true boys boy who manages to collect scabs and scrapes without anyone knowing.

The boy has been super vocal and talking up a storm and although his language is progressing nicely a lot of it has to do with his stimming which can be really funny as he sounds like he’s rehearsing for some big public speech. However, he still struggles with how to communicate his feelings including when and if he hurts himself.

If you listen carefully sometimes you may hear a little “Ouch!” or if you’re careful not blink you might also catch him rub his head or an elbow as he darts by but other than that the kid seems to feel no pain.

I’ve birthed a superhero!!

Therefore you can imagine my surprise (and fear) when he hurt his little ankle so bad that he literally couldn’t stand or walk on it. After an ER visit and X-rays showing a slight sprain, there were still no tears, just demands of “Hug!” which means pick him up and “This one!” with his tiny finger pointed in the direction of his desired final destination. For 3 days I was his mule, carrying him from the couch, to train table, to the bed, to the dining room, to the bathroom at the commands of “Hug! This one!” Finally, we’d both had enough and I had to revert him back to the old way of doing things….speed crawling!

Coincidentally, or maybe not so much, he got tired of that real quick and was up and about like nothing happened further confirming what I’ve known for some time now……Caleb is part genius and part con-man.

Wait, does that make him less of the hero and more like the evil villain?!

Anyway, the young cub is doing just fine now. He continues to use his charming traits both at school and ABA but it’s more effective on the lady teachers than it is with Mr.J at therapy.

Around the holidays I asked for Caleb to start working with Mr.J full time at ABA because I’d noticed how well Caleb responded to him and it’s made a huge difference in our lives. Caleb is progressing in his programs at school and his aggressive behavior has decreased so much they’ve taken it off of his programs as far as things to work on. It’s a great feeling knowing that they no longer have to put on arm guards when they see your kiddo coming! School is a different story, his tolerance for his peers hasn’t really changed much but he has good days and “handsy” days. I know on the days his notebook reads “we continue to work with Caleb on his emotions” that poor child has felt the inside of Caleb’s little heavy hand.

Now does Caleb still have tantrums..absolutely! He’s 3 and spoiled…Duh! But these episodes at school are not malicious or out of anger most times. We just haven’t been able to figure out his triggers, and when we do there’s a new one. I try not to let the “handsy” days get me down. His teachers are great and we stay on the same page both at school and home with his behavior. I’ve reduced what he watches and screen time just in case those were factors as well.

For now, we just stay consistent and help our tiny Jekyll & Hyde manage his emotions.

It’s our anniversary

What a difference a year makes

November 25, 2017 A Mama Bear and Her Cub was born!! I can’t believe it. I started writing this blog for many reasons but the support, encouragement and responses have been more than I could ever imagine. I wanted to document this journey really as a way to communicate to family and friends what was really going on. The REAL shit behind the fake smile and the generic “we’re good” that I had mastered when I just don’t feel like talking about it all. I also wanted this to be a love letter for Caleb when he got older. A non-fictional love story about his mother who had no idea what she was doing but loved him more than life and somehow figured it out. I want him to know that on the days that it was hard for me I always knew it was that much harder for him. I want him to know that I never gave up and I’d never let him give up. This is why I write.

I had no idea that so many people would be watching and listening. I had no idea that people would ask me to share my story on different platforms. I’m no expert and I never claimed to be but what I have become, unintentionally, is an advocate. What I have become, intentionally, is a badass kick ass warrior mama bear who will ensure her son has the best life he possibly can. We will never give in to the can’ts and won’ts and the impossible. The progress we’ve made in just over a year proves that we can do anything, that Caleb can do anything. It may not look the same, the road may be longer and not as smooth but we will get there. The last year has taught me to update my expectations and everyone else’s gets checked at the door.  This year has taught patience. My neighbors may not agree since I’m yelling “Caleb Ashton!!” 100 times a day but I promise progress has been made. After all he is still a 3-year-old boy who likes to jump from couch to couch, slide down the stairs, throw balls on the stove and every other hear stopping daredevil adventure he can imagine and or imitate from television.

As our journey continues its my hope that you continue to follow along, its my hope that you continue to lift us in your prayers and your hearts, its my hope that you are inspired and its my hope that when you see a mom having a hard time with a child having a tantrum in Wal-Mart that you send her an empathetic smile because it may beyond their control. I can guarantee you she will appreciate it, she will feel less embarrassed, she will feel less judged. She will be re-assured that’s its going to be ok and this too shall pass.

xo Mama Bear

What they don’t see

The creation of this post started a little differently than the others. The title was easy, as it has become a statement I’ve found myself thinking more often lately as I observe others interacting with Caleb.

In my attempt to describe what this means I went online to find an article I read recently about the challenges of “high functioning” autism. The article was so relatable as it talked about having a child who doesn’t “look” disabled and the internal conflict of whether or not to explain certain behaviors. Do you just blurt out “he’s autistic” when kids his age are trying to hold conversations that he can’t have? Or when parents ask the question “how old is he?” Not because they want to know but because they want to figure out why he’s socially awkward. I couldn’t find the article that spoke to my soul but in scrolling through my Facebook one morning I saw this caption “People think we are over protective, over bearing and causing the problem. Yet they don’t know what we know. They don’t see what we see. #autism”

The caption alone had me yell out “Yaaaassss!” and as I read the blog attached it felt like I was reading my own story. My fellow autism mom talked about how other parents looked at her when she took her kiddos to the park to play. The way she hovered and kept close. She went on about watching kids and parents laugh at and/or walk away from her child leaving him isolated. The looks of “something’s wrong with that kid” but they can’t quiet understand it because he “looks normal”. Autism doesn’t have a look. Sometimes its the awkward elephant in the room attached to the “normal” looking devilishly handsome young boy who may want to play but doesn’t speak or doesn’t want you too too close just close enough. Autism may be hand flapping or random monologues from a cartoon he’s memorized. Autism peaks out when other 3 year olds are talking about trucks but your 3 year old can identify the difference between a bulldozers, excavators, cement truck and a crane.

I, too, am the mother that hovers when other kids are around. No it’s not because I’m over protective, it’s actually for the safety of the child. Caleb is not above pushing, pulling, hitting, hugging, grabbing any little person in his reach and the fact of the matter is if I’m not there intervene then you’d probably wish I was and then we may have a bigger problem.

Last weekend Caleb’s Barber, who we’ve been going to for a year, commented on how amazing he’s been doing. Until recently Caleb used to sit in my lap for his haircuts and he would scream at the sight of the cape. Sometimes he would cry through the entire appointment, other times he’d just fuss and squirm. Mr. O has always been consistent and patient. For two weeks now, Caleb has been sitting on his own in a booster seat and this past weekend he put on the cape, not a tear or hesitation. Just my big boy in the barber’s chair getting his haircut with his iPad. When Mr. O commented on his progress he said “what did they say he had?” I reminded him it was autism. He shared that he had a family member who was autistic and she seemed more severe than Caleb. THIS was one of those times that I thought to myself “it’s all the things you don’t see”.

Although Caleb has grown A LOT in the last year there is so much work still to be done. The fact is he has to actively work on his development. There are hours spent on behavioral and speech therapy 5 days a week, reinforcement at school and at home; everything is intentional as we work on his developmental delay and then there’s the managing of his SPD (sensory processing disorder).

What they don’t see is how exhausting and frustrating it can be for him. What they don’t see is the restless nights because his brain can be so overloaded he can’t seem to shut it off. What they don’t see is the meltdowns on days he has therapy and school because he’s working so hard that it can be overwhelming by the end of the day and he just needs to release. What they don’t see is a mother’s heartbreak while he fights through the emotions or her bruises, scars and busted lip from the really hard days.

Caleb’s chances of living a normal high functioning life with autism are great. Early intervention has been the key. He’s super smart and is the most beautiful boy in the world (in my humble opinion) so I pray he is successful and has a wonderful family in his future but the reality is that people won’t see how hard he worked to get there. My hope is that encounters more kindness than not along the way but in the meantime I will continue to advocate (and hover) because there’s so much that people just don’t see.

**For those of you interested and don’t know much about Autism Spectrum Disorder I’ve attached a really good link on the 3 levels of autism. Caleb’s official diagnosis was Moderate Level 2**

All Hallows’ Eve

Halloween has never been my thing. I didn’t grow up celebrating and I’ve never gone trick or treating. I don’t like scary movies or anything that symbolically represents the holiday. When Caleb was born I got him a little puppy costume as part of the typical “baby’s first” milestones and even that was a fail. I purchased the costume too far in advance and by Halloween the little hat was too small, which was fine because he had already developed his hatred for hats, and the back wouldn’t zipper because he had gotten so chunky. LOL. I should’ve know then we should probably continue to skip over this holiday.

In 2016, we were living in Georgia close to family and Caleb’s godbrother’s birthday is Halloween so we celebrated him. Caleb wasn’t in school or daycare so I felt no pressure to get a costume.

Last year was a little different, Caleb WAS in daycare and instead of actually calling it Halloween they asked that kids came dressed as their favorite story book character but basically they were forcing parents to participate. I say force because who wants to be the parent who’s responsible for their kid not participating when all the other kids are?? NOT ME! So off he went in his little doctors outfit which was recycled from another made up event they had the month before. Don’t judge me!

At the time Caleb could care less anyway, he hadn’t been exposed to candy so he didn’t really care about that. He wasn’t even talking much so the whole concept kind of passed him by. This was all pre-diagnosis. What I didn’t know then, was that I was on borrowed time.

Skip to present day October 2018 and suddenly things would no longer be so easy. My little chatter box was not only talking and understanding but he was also in school and apparently learning a lot about ghosts, witches, “spooooky”, trick or treat, pumpkins and Halloween. LUCKY ME!!!

For weeks he practiced his trick or treat around the house. We couldn’t go into target or Wal-Mart without him yelling “look halloween!” The excitement was building. (the excitement for him anyway) I, on the other hand, was growing more anxious and conflicted. It was a joy to watch his excitement, I was starting to understand why parents do this every year. His eyes would light up, it was a new concept and he was so tickled by it all.

I knew he didn’t really understand what it would mean to dress up and go out trick or treating. I was thinking about his sensory processing disorder and how overwhelming it could be for him. Wearing a costume, interacting with strangers and seeing others in costumes could be a recipe for disaster. I grew anxious just thinking about it all. But how do I not let him experience something he seems to be so excited about?!

As the days grew closer, I decided we would go to the trunk or treat festival at school which was happening a few days before Halloween (familiar place), I would only let him wear his Superman cape which he already had (also familiar and not restricting), I would wear one too and maybe a mask so that he wouldn’t be scared with others who wore masks, and we continued to master saying trick or treat. The plan was in place!

When I brought home his little bucket, he saw it and immediately yelled “trick or treat”, he knew exactly what it was for. I was prepared and was preparing him. It would be a good day. If things went well we would determine what to do on the evening of Halloween.

The day arrived and since he had ABA that morning I made sure he had a nap. Taking a nap still made all the difference between good times and miserable times with Caleb. When I got off work I put on my excited face, maybe went a little overboard, and we got pumped up and ready to go.

Me: “Caleb are you ready to put on your cape?”
Caleb: “No!”
Me: “Are you ready to go see your friends at school trick or treat?”
Caleb: “No!”
Me: “Caleb look mama has on her cape, let’s go!”
Caleb: “No!”

I should’ve given up but I didn’t. I wanted him to try just see one way or another if he liked it. We have a rule, that we try new things and experiences and if he doesn’t like it we stop or leave but he has to try. Caleb needs to be exposed to different things and people. That’s the world we live in and he doesn’t get to sit home on the iPad because it’s his safe place. So despite not liking Halloween, or my anxiety, it was important that he had the experience. I’m raising Caleb to have the confidence that he can do whatever he wants, that he can have the same experiences as everyone else if he wants and if he decides to not doing anything it will be on his terms not because he can’t.

So we got dressed and although he was a little fidgety with his cape and kept popping the handle off his bucket, we made it to the trunk or treat festival. The music was loud and most of the kids were bigger than him. We didn’t see any of his friends from class. Maybe their moms knew better than me. I watched as he looked around and observed. He didn’t want to get too close to anyone or their candy. It took all of 5 min before he was asking to “go back to car”. We walked a little longer and as he grew more uncomfortable he reached for my hand, we turned and headed towards the car.

I attempted a few more time to get him to go over to the tables and recite his well rehearsed “trick or treat” but I had no luck. By this time he was reciting his ABCs, his comfort song. It was familiar and made him stay calm when his own anxiety starts to build. This was something new that he started but was a big step in self soothing but I know then that it was definitely time to go.

He was quiet on the way home as he sucked on his lollipop that we had brought from home. He was uninterested in the 10 little pieces of candy I had managed to scrape up for him while we walked. As I watched him in my rear view mirror I knew he was over it and the thrill was gone. Once we got home and the cape was off and his bucket put a way, it was the last of any Halloween talk around the house. When Halloween came 2 days later he was none the wiser, it was just another day and lucky for me nobody rang our bell to bring his attention to it.

Like many of our experiences and adventures we did it, we got through it and maybe next year. As always I will follow his lead but as always I will follow his lead.