One of the hardest parts of Rayne being diagnosed with autism was the mourning. The only thing harder was the feeling of guilt about mourning. My baby was going to be fine, she was healthy otherwise, and here I was depressed and crying like she had just received a terminal illness diagnosis. I didn't understand what I was feeling for a very long time.
The Early Signs
The most common question I'm asked is how did I know so early. I started questioning things and researching when she was only 18 months old. Not responding to her name was what I remember being my biggest concern, she wouldn't even flinch. She lacked interest in toys, she would sit for hours just banging a hanger on the ground and being as happy as could be. Ultimately, I just knew. It's that 'mother's instinct' and I listened to it.
It took about 2 doctors visits before they agreed that it was a strong possibility but she would not receive her official diagnosis until age 3. However, they started early intervention, and on her 3rd birthday, we were able to get the official diagnosis which opened access to more resources.
The Specialists
This was the hard part, the number of doctor appointments, all the different specialists, and all the testing. The worst experience was the first neurologist we saw, he was kind but he made the comment "kids like this don't normally talk". We hadn't done any scans and this was his first time meeting her. He felt comfortable making that comment after 10 minutes and so we felt comfortable never going back to him.
Here in 2022 we finally did genetic testing to see if they could spot why she has autism, and they can't. No mutated genes, she just is. They continue to do EEGs and these are truly the worst. It's nothing more than putting sensors on her head but we have to wake her up at 3 or 4 in the morning, go to the hospital at 8, let them hook 20+ wires to her head (which if the tech isn't quick enough turns into a total disaster), then I have to get her to go to sleep with all this junk on her head. We've done two so far, the first one went well, the second one was a disaster and we couldn't even get it completed.
She does show signs of seizure-like activity in her brain and is on medicine, but as far as we know has never actually had a seizure. Thankfully.
Non-Verbal
We still classify her as non-verbal but she is making a ton of progress and has a few words down. Of course, her most used word is "no". Non-verbal does not mean non-sassy. She has picked up the word "rocket" from her favorite show, Little Einsteins.
A few times we have gotten clear statements that are used correctly, so it's coming.
One morning she threw a fit and we realized it was after Lilly went upstairs after finishing breakfast first. After a few rounds, we realized she was saying "where's my sister". "Thankful for the cameras in the house, we were able to watch it back. Once I heard it, I repeated it back to her and the fit stopped immediately and she sat down. Lilly came down to sit with her and she was happy as could be.
Another time, Mike and I had just gotten back after a short weekend away and stopped in to say goodnight to the girls. When we went to leave I waved and said "love you girls", Rayne waved back and said, "love you". All of the parents and sisters were there to witness it. It was beautiful and I can't wait for the next time we get to hear those words from her.
So How Does Rayne Communicate
She has her own ways of showing us what she wants and she finds better and better ways as time passes. Some days we have to do a lot of guessing, other days she can clearly show us in her own way. Her preferred method is taking our hand and leading us to what she wants, if its out of her reach and she will guide our hand to it. Sometimes it takes us a few tries, we will hold the item in front of her and if we got it wrong she will push the item back. If she can reach it she will bring it to us to open, or now, she can reach the milk and orange juice in the fridge, so she puts the jugs on the counter when she wants a drink.
Some days are easier than others.
As Rayne has grown, fewer things are out of her reach. For example, she can get on the counters if determined enough. So when she knew we had hidden the cupcakes in one of the cupboards, we got to watch back on the camera as she got her step stool from the bathroom to help. She got on the counter, took the entire cupcake container, peeked around to make sure no one was looking, and bolted for her room. The only reason we knew was because she was nice enough to bring it back and put it on the counter when she was done eating the remaining 3 cupcakes.
Have I mentioned she is a total monkey?
Things No One Prepared Me For
Being an autism mom can be so lonely at times, sometimes my child does things that are gross or is harder to deal with. I've had my fair share of breakdowns asking why the universe thought I was strong enough to handle this. It doesn't mean I love my daughter any less, but she is more challenging than a nero-normal child. So here's a few of my biggest struggles starting with the one that made me feel the loneliest.
Fecal Smearing: Yup, that's right, smearing her poop all over the walls in her bedroom. We couldn't keep her jammies on, she would take them off then if she had a BM, would smear it all over. Afterward, it would involve me crying while she's taking her second shower of the night and I'm scrubbing walls. I felt embarrassed and alone. Our family dubbed it poop-caso. The house would reek the rest of the night, she would laugh as I was crying and having a breakdown. I didn't understand. Well, finally it was explained that it's a sensory thing and we found jammies she couldn't escape from. (Zipper up the back, with three different snaps over the zipper.) We call them jail jammies and my own way to have a laugh was to buy the black and white stripe ones that really look like a jail jumpsuit. Nanner-nanner kid.
Always Naked: She refuses to wear clothes when home, we are lucky we taught her she can't be naked in public. She gets two steps in the door and BAM, down to her diaper. So people come to visit and she's running around naked, if I try to make her wear clothes then she thinks we are going buh-bye and if we don't.... meltdown. I can't share most cute pictures I get of her anymore because Facebook marks it as child p*** and I get a 30-day ban. Learned that the hard way.
Won't Eat: She will hardly eat anything outside of noodles, chicken nuggets, mini corndogs, and cheese sticks. Some weeks she will hardly eat anything. It's scary when you don't know if your kid is healthy. She is on track weight wise so it's balancing out somewhere but it sucks that I don't see her eat a full meal.
Biting: Not just normal young child biting, like gets frustrated and chows down on the closest thing to her and if she can't find something she will use her wrist. She will bite herself to the point of having bruises all over her arm and its sucks to see, we don't want our babies to hurt. Rayne's problem is her frustration of not knowing how to communicate something or some days she is just throwing a fit because she can. The problem is the furniture and banisters. We gave away her bed frame because she doesn't sleep in her bed but it looked like we had a little chipmunk that had eaten it. The entire headboard & footboard we covered in teeth marks. At our old house, there were teeth marks on the banister. We use "chew buddies", these little tubes that click onto her shirt, but when she's home she doesn't wear clothes which means no chew buddy. Makes things a little complicated.
OCD Tendencies: I didn't realize she would have these little ticks. She can't stand doors around her being open, she has to shut them all. She doesn't like the throw pillows on the couch. When she sits down to eat her poptarts in the morning she has to lay them out side by side, then break them each in half, and will eat the halves from left to right. Most aren't an issue, some can be problematic: such as teaching her to shut the door not slam it.
Rayne Proofing Our Home:
Yeah, she is way too smart and has no sense of danger. We've had the cops involved in searching for her when she went missing one summer after sneaking out the basement door, we've caught her on the outside of the railing of our loft, and she wants to explore anything.
The few tricks we've found are putting sensors on all the doors that ping when they are opened, shutters in her room that keep her out of the window sill, and locking her bedroom door from the outside so she can't escape when we are sleeping. Sometimes it feels awful locking her up but it's truly for her own safety and everything is easy enough for her older sister to undo in the case of an emergency.
The Cute Things
With all this being said, Rayne is a gift to our family and we enjoy so much about her.
She is great with eye contact which is a big thing with autism.
She is affectionate, she loves cuddles and forehead kisses. She gives the best hugs.
She loves classical music and you can catch her humming Mozart and the Little Einsteins theme song.
We feel like she is acting out parts of her shows in her head, she will do these big productions in the living room, jabbering to my plants, waving her arms around, it's fun to watch.
When getting scolded she will close her eyes (I can't see you, you can't see me) and give her biggest, cheesiest grim.
She will pull 0ut her toys and line them up in lines across the living room.
She will spin circles until we are dizzy watching her, then laugh when she falls down.
She will go into these giggle fits (which we confirmed are not seizures) and by the end of it, we are all laughing at her laugh. Her giggles are contagious.
She is a TOTAL monkey, she likes to crawl all over the outside of our Jeeps, walk along the back of the couch, and do her own version of don't touch the ground. She has some serious muscles for a 5-year-old.
She can't stand a made-up bed, if she goes into my room and sees the bed is made, everything is dragged onto the ground.
She is terrified of plants (I own 40+) when they are at the store. Once they are home she is fine with them. She will straight up lose it when she sees the plants at a store, we aren't quite sure what it is that's so scary but once they are in the house it's all okay.
The smaller the dog, the louder she screams. Though she will manhandle our 75+ pound Goldendoodle at home, if she sees a 15-pound puppy, it's over. She screaming and climbing whatever or whoever is closest.
All of this is to say:
Being the parent of a child with autism is so extremely difficult, somedays you don't know how you are going to get through it, but 100% of the time you know you wouldn't change anything.
Rayne has taught us all so much, she brings all of us joy and helped us see the world differently. She always keeps us on our toes and gives the greatest hugs when we need them most. Finding resources to plug into, reading whatever you can find online, and knowing when to take a breather are what will get you through it.
Some days we all need a 10-minute break, including Rayne, so it means putting her in her room for 10 minutes while we breathe. It's okay, it doesn't make you a bad parent to do the same.
Hang in there on the rough days and soak up the good days!
Much Love,
M
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