Caleb had a great morning yesterday. He’s actually been having lots of amazing days. He’s taking a new supplement. He’s talking more, clear and concise cognitive thoughts. He is an absolute joy and I’m really enjoying this phase of parenting.
When he came home from therapy yesterday he asked to watch Angry Birds 2. I hadn’t watched these movies but he was watching the trailer on YouTube and was enjoying the music. Less than 5 minutes in he had his ears covered, he said he didn’t want his headphones. Instead he got up ran in the room and closed the door. I turned off the TV right away and yelled that it was off and everything was ok.
I was too late. He opened the door and said “Mama I wet myself” his face had already changed. It was happening, we were about to go through a meltdown. The “look” of a meltdown is one of both sadness, fear and anger. Tears were in his eyes. I told him it was ok and as I went to comfort him and change his clothes he went on the attack. It was the worst meltdown he’s had in awhile. It would last for what seemed like forever.
He was intentionally and unintentionally urinating on himself and trying to vomit. I got scratched and hit in the throat. Fuck! That one hurt. I wasn’t fast enough, soon I won’t be strong enough. He’s a solid 60lbs.
I’m ashamed to say that I didn’t handle it well. I apologized immediately. He was hurting, he didn’t mean it. I was hurting. We were both sweating. By the end of it I had stripped down to my underwear and he was naked.
We were exhausted physically and emotionally. I was asking him to tell me his feelings and he was screaming “SAD!!” but couldn’t tell me why. When he finally ran out of steam, I held him on my lap, a lap that he’s outgrown. He will soon be bigger than me. I wiped his tears and told him I loved him.
And then as quickly as you flick a switch, he wiped his own tears and asked me for a cupcake. We were on the other side…well he was. Sometimes it takes my mind body and soul a little longer to catch up.
As I fed him his cupcake he asked me for underwear and his iPad, when I got back with both he quietly touched my cheek and said “sorry mama” and then found his YouTube videos like nothing happened.
I was sorry too, I told him again. Sorry he had to go through this, sorry I didn’t know better about the movie, sorry that I didn’t turn it off at the first sign of overstimulation. Sorry that I screamed out and screamed at him when I got that tough little right hook to the throat.
While he relaxed on the couch and waited for Gemma to come back with his lunch, I cleaned up the three rooms we had destroyed in the process. The pee on the bathroom floor and my bedroom, the toys he’d thrown and broken in the living room, papers he’d pulled off the kitchen counter..our clothes that we’d stripped out of as we tussled through the house in my attempt to restrain him. In a meltdown he’s out for blood and destruction. Protecting him from him is priority number 1, protecting Gemma is next but she luckily was not home. In our last meltdown I yelled out “mom go in your room and lock your door!”
It scared me..I’m sure it scared her.
Caleb will be 6 soon but in a meltdown he has the strength of a man. He’s becoming more powerful, I will physically have to maintain my strength to protect all of us from these meltdowns as I don’t know if or when they’ll ever end. That is a reality I have read about and have started to prepare for. It’s the reality that will never make it to our YouTube channel but it’s also an important part of our story that I feel the need to share.
Caleb is not only autism but autism is a part of our world, everyday and all day. It doesn’t always present itself in a meltdown but when it does, it is unannounced and certainly packs a punch (sometimes literally).
Thanksgiving used to be my favorite holidays. I have lots of cousins (from my moms side)and that was the day we all got together when I was younger and even as I became an adult. It was the one day of the year that I knew I could go “home” and be brought back to childhood. Thanksgiving 2012 was the last one before my grandmother died and it was the last Thanksgiving that I enjoyed.
When Caleb was born part of why I wanted to move to FL was to be close to family so he could experience the same with his cousins here (from my Dads side) that were close to his age.The first thanksgiving we were here was around the time we found out that Autism was a real possibility but aside from that Caleb was already showing signs of overstimulation, aggression and not really being social. All of this meant mama once again, didn’t get to enjoy Thanksgiving. The following year was a little better, we knew what we were dealing with; our family was also aware and did their best to help but the anxiety was still there.
Family gatherings are hard. Caleb loves his family but gets overstimulated. He doesn’t eat anything, he doesn’t want to sit still at a dining table and there’s lots of people around. I, in turn, barely get to eat, I spend most of the time chasing, navigating, hovering and more importantly not enjoying family time.
It sounds awful to say in a time when people would kill to be with family (Some are literally risking it all to be with family) but I’m glad we got to stay home. I sat down and ate. Caleb had his usual chicken nuggets. There was no hovering, no anxiety, no reminders that Thanksgiving may never be the same.
This Thanksgiving the thing I’m most grateful for is that there was no real Thanksgiving. It may seem selfish but Caleb had a great day and everyone was happy.
Maybe we’ll try again in 2021
5 years hasn’t felt very long, we’ve had some weeks and months that have actually felt longer.
Every day I look at you, Caleb, and I realize you were sent to me and that not much has changed about you from the moment I saw you on the sonogram screen. I’d never had one of those before and I was able to identify right away that you were a boy. When I sat up and looked closely at the screen I remember saying, “Is he upside down?” Just a little upside gummy bear is what I saw. The midwife laughed and said “well we can’t determine the sex so early but it’s definitely upside down.” Right away I looked at Gemma and said “God help me, I’m having a little bad ass boy!” LOL I wanted a boy. I prayed for a boy. I knew right away you’d be jumping off furniture and bouncing off the walls and as the Big 5 rolls up on us you are doing all of those things now more than ever!! In fact just this week you’ve turned our living room into your own Ninja Warrior obstacle course exclaiming every minute “Welcome to Baby Ninja Warrior Kids!”
I was wrong about the bad part though, nothing about you is bad at all, not from a single hair on your head to your little brown feet. You are pure unfiltered goodness and I pray every day that you can stay that way in a world that has stacked the odds against you. You are, however, still doing things your way and on your own time. (Preferably upside down..lol) You are determined and stubborn. You are brilliant and bright. You have a light that shines through from that beautiful smile that no one will ever be able to deny. They will try to for sure and maybe even attempt to dim it but don’t let them. You never ever dim that shine Caleb, it will lead you to your purpose and hopefully your passion. It will light the way for others around you who need it and don’t know how to use their own, but that’s ok, because that’s all a part of being kind.
I hope you also remain stubborn. It will probably cause us to bump heads while you’re growing up but I never want you to lose that. While I am with you, reserve some of that and save it for later, I will never steer your wrong but when I’m gone you will need it. You will need it to fight and advocate for yourself. Hold firm to what you know you can do, don’t relinquish control of what you want. You have my permission to kick and scream like you do now to protect your joy and peace at all costs.
This 5th revolution around the sun has been one for the books, you will not remember any of what’s happening outside of your little world and for that I’m grateful. I hope the grown ups around you and of this time can manage to fix some things before you ever have to know about it. I’m definitely trying to do my part. I’m trying, somehow, to do my little part in making this world nicer and safer for you. It is not easy though, in fact, it’s much like your ninja warrior set up with obstacles at each turn but slowly but surely progress is being made. Everything I do is to make you proud.
My tiny best friend, my son shine, my Bear Cub….you’re growing so fast, so funny, so compassionate. You work hard every day to work through so many emotions and feelings. There are so many little things that others take for granted that you have to really put your mind to in order to achieve, sometimes I wish I could take those daily struggles away, and yet other days I see how that fight has made you into the little brilliant boy that you are. You are a master at some many things. Your ear for music and your curiosity of different languages are skills I hope you keep. I don’t have any expectations of what your future should or could be, I am only here to guide you along the way and I’m so very excited about our journey.
Te Amo Caleb Ashton, Te Amo mucho. -Mama
Our gorgeous photographs were done by jennifer alyssa photography
The first week in May is when it started to seem like the light was finding its way through the cracks of darkness. The light at the end of the tunnel was faint. The Rona is still acting like a mean old bitch holding onto a grudge. Florida regulations had started to ease up and although I had (and still have) no plans of going out and frolicking or taking Caleb out, that gave us a little relief. For one thing, our community amenities had opened up, I could take Caleb to the playground and pool. We were both so very tired of science activities on the patio and the weather was getting into those steamy 90+ degree days. The pool was something for us to look forward to in the evenings and weekends although there were still restrictions there as well.
Another bright side was ABA had started to allow more therapist in the building, still heavily restricted on the interaction amongst kids, Caleb was able to grab 2 days with 4 hours a day. This is great! I was, and continue to be a little nervous, but we needed these services. Caleb needed these services. He needed his people and instantly the sense of routine helped everyone and home life.
At this point, work also started to relax. People were settled into the new normal. There were fewer unexpected urgent meetings to attend. I could plan my day and get Caleb into a routine. With school and those dreadful zoom meetings, coming to an end it was time for me to focus on homeschooling plans for next year. I submitted our application for the state grant, I started looking up speech and occupational therapy options, mama had a little time now and it was time to dig out of the darkness. Setting up speech and OT now ensured Caleb a spot in the fall AND allowed for him to be out of the house getting more services now. We knew for sure summer school was not an option and we needed to keep him moving forward.
Within 3 sessions of being back in ABA his caseworker advised that Caleb had not truly regressed but he had jumped 20 points in his latest evaluation. (So basically he was faking it for attention during our Rona shut in?! Got it! Sneaky little rascal) I wasn’t completely surprised though because despite the behavior issues Caleb was speaking more, he was participating in imaginative play, he’s reading, his personality was on 1000 telling jokes and playing pranks on his grandmother and myself.
Oh and then there was Mother’s Day weekend when he taught himself the Russian alphabet in less than 24 hours and the planets of the solar system.
Keeping up with this child had become an emotional rollercoaster. I’d be lying if I didn’t say I found myself occasionally second-guessing my decision to homeschool. I knew his public school wasn’t a good fit for sure but I also worried that I wouldn’t be able to keep up with his mind. I’m always amazed at what he already knows and what he wants to learn. He gets so annoyed with my lack of understanding as it pertains to the Russian language. I’m subpar at best helping him form sentences in Spanish. I also worry about what he won’t be interested in but will still need to know. History for example, even though he will be taught real history (black folks NOT sold separately) what if he doesn’t like it? How do I make it fun? I am not a teacher! I suspect some tutoring will most probably be involved but I don’t have all the answers yet and it’s almost time to get this plan in place.
Fast forward to June and I continue to struggle with the homeschooling idea, I know it’s what best for him but I also worry about failing miserably at it. This pandemic threw us into the deep end and we still haven’t quite recovered. The world hasn’t recovered! Florida is moving forward with school opening as normal in the fall (aka second week of August) despite CovId cases on the rise. I believe virtual schooling is an option but that has proven to not be Caleb’s cup of tea. I can’t imagine doing it with a teacher he’s never even met and built a relationship with. The good news is we are in speech therapy which he loves and will probably move forward with the occupational evaluation as well. I’ve started printing worksheets and incorporating school work throughout the day. I’m realizing now that we should start now. Caleb is all about routines and the faster we get him on one the better it is for everyone.
The transitions continue to be hard, the meltdowns are still very much a part of our life. We are trying to love him through it and give him a safe space, but it’s so emotionally (and sometimes physically) draining. My 5-year-old has a really hard time being out of control. Examples of what that looks like for Caleb are things as simple as a tv show ending and not knowing what’s coming on next. He’s gotta know what’s next. Obviously, the removal of screen time is always a hard transition. What I “think” I’ve learned is that the iPad serves many functions for Caleb. It’s his blanket, his comfort item, even if he’s not actively on it he wants it close or he’s like “where’s iPad? What’s iPad doing?”. It’s also something he can control. He has his apps, his games, his educational material and if he’s in the process of mastering something new and that process is interrupted…HOLY SMOKES!!!
The iPad continues to be the thing Gemma and I both love to hate. On a daily basis, we threaten to throw it in the garbage and yet we too have come to rely on it. I have to cook dinner Caleb, go get your iPad. Mama has a meeting baby, go grab your iPad. How confusing that must be for him?!
I guess the good news is I’ve identified this as an issue and I’m actively working on it but this is our life. The Rona tales continue…and so does the random outbreaks of the Russian alphabet.
We’ve been in quarantine like the rest of the world since March dealing with the effects of CovId-19 aka “The Rona”. One day Caleb was coming home from school telling his teachers “See you after spring break” and the next life was coming to a screeching halt. Most of it was a blur really, now that time has passed, I find myself thinking,
“How did we get here?” it feels like the twilight zone.
I don’t remember if we were thrust into homeschooling months ahead of schedule, or if ABA shut us ALL THE WAY DOWN, or if work started to pick up for me but it was a whirlwind that we were swept up in and I had to get things under some sort of control.
The weeks to follow would consist of long work hours for me, NO therapy for Caleb, various zoom meetings scheduled for a 4-year-old. (I suspect if you don’t have an ASD kiddo that sounds crazy, and guess what?? It is!!) But it’s the only sense of normalcy and routine that we could salvage. Caleb HATES video calls. Despite what Instagram shows by way of his occasional “Caleb Show” posts, he doesn’t like speaking on the phone, FaceTime, or anything like that so 30 min of circle time via zoom was pretty much torture. He was also supposed to have speech therapy via zoom once a week, but we never made it. The truth is, Mama had to work!!! I had my own increase in meetings now on my daily calendar and I just couldn’t. Mentally we just couldn’t do it. The same was true with ABA, we opted out of telehealth sessions for Caleb, and instead, his caseworker and I met once a week for an hour where I provided updates on Caleb and he provided recommendations on how to help him adjust to what seemed like our new normal for the indefinite future.
Initially, the Rona Break, felt like a few weeks in the summer when there is no summer school but the main piece of the puzzle was no ABA and my work was increasing by the day. Caleb has never been a fan of me working while he’s home. On school days the moment he got home he would ask “you finish with work?” and then impatiently wait the hour and a half until I was done. This just progressively gotten worse as the weeks passed. Monday’s continued to be our hardest day, the transition day from weekend fun 24/7 with mama to “mama has work” or as he says now “you have to check email?” Every move I make during the day, whether it be bathroom runs or for a snack, is met with “you finish with work?” It’s heartbreaking each time. I know I have to work and he knows I have to work but the question always stings a little. On top of that, I started to question whether homeschooling next year would be the right decision. My baby was missing social interaction and be out of the house and he was relying heavily on on-screen time which naturally had me feeling like a terrible mother.
Anyway, somehow we got through it and when I say somehow I mean tears were shed, too much wine was consumed and the house remained in total disarray. This has been our life day to date and I’d be lying to say things didn’t suffer. Gemma and I both struggled with mental health and I think Caleb did too. I’d started to notice a little regression a few weeks in with Caleb. He didn’t want to be as independent. We were back to restless nights, including the night terrors. Oh and let’s not even mention the behavior. Or should we? Yep, the throwing himself down, the hitting, the attempting to hurt himself, and the intentional urinating on himself became a daily battle.
He was acting out for attention as he had before becoming verbal and this was all triggered by various things but what it boiled down to was Caleb had become overwhelmed and frustrated beyond his control.
And who could blame him?!
That’s was how the world was feeling. I get it. I still do. However, with my sanity on shaky ground and my patience fading by the second I didn’t handle this well on some days. I didn’t give either of us much grace and it never ended well. I yelled too much. I was frustrated because I knew what progress had been made and yet we were taking steps backward. I felt out of control and disappointed in myself. I was back to square one in feeling like I didn’t know how to help him. He had words! Caleb, please use your words! Please stop screaming! Please stop crying! Just tell me how you feel!
Truth is he didn’t know. How could he? I’m good and grown and didn’t know how I was feeling from day-to-day. I should’ve given us both more grace but I couldn’t find any to spare.
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?
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.