.:*Happy Birthday, Marley!*:.
(mommy’s working on a slide show, your cake, your party, and all that goes with it…. so this will have to do for now)
First of all– I apologize for the long time between posts. Holidays are hectic even without everything we have going on and it’s been way too easy to put off this post for way too many days/weeks.
I’ve honestly not wanted to write lately because things have gotten more difficult and I was so afraid of coming off negative, etc.
After a month of tomorrows… and the realization that things aren’t just going to ‘get better’ so I may as well share my experience with people who might actually ‘get’ it.
I was walking with a friend today and she commented (after Marley expertly avoided coming within 5 feet of a storm drain), “I feel like every day is an uphill battle for you….”
“Nope. Some days are downhill– I see thing things are going to go to crap, and so I just go with it .”
Lately, our rollercoaster has just been in the most frustrating bb
And that’s where I fell asleep.
Almost a month ago.
I’m fairly sure I erased the 3 lines of ‘b’s that followed those two.. but you get the gist.
I can make excuses…. I can talk about how I’m usually on line from my phone and how hard it is to actually ‘write’ on that tiny screen… I can talk about all our new pets (a hedgehog!? another dog!?) and how ‘busy’ I am… but really, what keeps me away?
What makes it so hard to come back here and write?
This is what I wanted, isn’t it?
I wanted ‘answers’. I wanted ‘a diagnosis’. I wanted someone to look me in the eye and say ‘you’re not crazy’.
So why isn’t this any easier? Why can’t I just come here and spill words into entries 3 at a time and let them autopublish for the week?
I could say it’s because I’m busy ‘being a mom’– too busy to write about it… but then, my Facebook holds me accountable and tells a different story (though it IS easy to post little blurbs from my phone).
Honestly, I don’t know why it’s so hard.
Yes, we’ve had a lot going on– who doesn’t? After Christmas we have less than 4 weeks before the birthdays start coming. Killian on 1/23, Chloe on 1/30, me on 2/10 (not that there’s an event for that, lol!), and suddenly it’s the end of February and I wonder where the first two months of the year went.
I’m still holding that long sought after paperwork that I needed to get Marley some services through the school district, however, we don’t know if we’ll even be in this school district much longer. My theory there is ‘why fight now only to fight again’? I know that I’m in for a lifetime of ‘fight’… but the process.. the red tape.. the transition for Marley… it’s enough to keep me sitting where I am and doing what I can for her at home. I’m hoping to get her into a local church next week for half hour long music and movement sessions. They have an area I can keep Killian and I’ll be close if something goes odd with Marley. (Right now my biggest worry is that she’ll tell someone the new dog is a ‘crotch licker’ like she did in PetSmart a few days ago… It may be true, but that 3 year old doesn’t need to know….)
The past few months have definitely been rough.
I’m still in that place where I ‘can’ tell people that she has Autism… but I seldom do… I just stammer and ‘blah blah sensory issues…..’ 😦 Way to raise awareness mom.
I still cringe when people use improper pronouns (he/him) to describe HER/SHE. I still hope she doesn’t hear.
I am still filled with preoccupation about what people think when we go out to eat and I gravel like a thief before the queen when I realize I grabbed ‘the wrong yogurt’ on my way out the door to avoid a meltdown because as of 20 minutes ago she ‘hates’ her (previously) favorite restaurant. When they come over and tell me that Killian deserves ice cream because ‘he was so good!’… I want to be sick. On them. And punch them. In the face. Simultaneously.
But I don’t. Nor do I call them out on their passive aggressive judgement and explain to them that last time we were at this restaurant Marley was under the table howling for the hour we were here… so in comparison to that, today was ‘good’. TODAY, she’s only wearing clothes 2 sizes too big instead of clothes from the womens/junior’s section. TODAY, she brushed her teeth with banana/apple baby toothpaste that costs more than double what I spend on mine.. and the other kids’… combined… for half the amount. TODAY, she agreed to come to this restaurant that she suddenly hates… on ONE condition– that I bring the frickin’ yogurt. The chocolate whipped Yoplait yogurt. Would I prefer organic? Local? Sure. But she wanted me to bring the chocolate whipped kind. The kind that Ben went to the store the night before to buy and then placed in the fridge for me. And that, my friend, is the game changing moment. I didn’t put the yogurt away. I let Ben do it. The man is practically an engineer– he can handle buying and storing yogurt. Right? Of course he can. It would be unfair to cop out and blame him. He did what I needed. He got the yogurt. He put it on the top shelf. Job well done. Until I messed it all up. I didn’t look into the fridge as I balanced a 35lb toddler on one hip, keys in my mouth, and a diaper bag on my shoulder. I just grabbed. I just reached in and grabbed one of the 4 yogurts on the top shelf, tossed it in my bag, loaded up the car, and drove the 20 minutes to the restaurant where I plopped it down on the table, peeled back the top and in doing so, unleashed the horror of key lime. Oh yes– nothing like seeing lime green where there should be chocolate. I saw it only slightly before she did and I started pleading– I’m sorry! So sorry! It’s my fault.. I should have looked…… I beg her to breathe.. to calm down… in hushed whispers as I feel their eyes burning into me.
Wow. That day still stings… I feel like I’m in the hobbit phase now.. Is that a phase in the grief/acceptance process? It’s probably a cute word for denial…
Chloe is pulling away and finding it harder and harder to choose to relate to Marley and easier just to stay at/return to her dad’s house where things are ‘normal’. That kills me. It literally breaks my heart in two.
But I get it.
Wouldn’t I like a safe place? Somewhere that I could go and not worry about crossing the mindfield that has become Marley?
Of course I would– but that’s not reality for me. In some ways, I’m glad that Chloe has that escape… and in others… I am completely envious.
I hope to be more ‘present’ here. This is my ‘place’.
When she’s sleeping.. and Killian is sleeping.. and Chloe is gone… this is my escape. I’ve had many wonderful moms reach out to me in the short time I’ve been blogging.. and I see the support that these ‘mommy bloggers’give each other… I want that.
I NEED that.
WE need that.
Because some days, when I see it all going to crap… I need someone to roll with down this long mine covered hill.
Well, our visit to Baltimore went well. I mean, if you don’t count the labwork. Or the fact that it was a drizzly, foggy day. Aside from that, it didn’t suck. 🙂
We met with Dr. Deepa Menon at the Center for Autism and Related Disorders at Kennedy Krieger Research Institute. After talking to me and observing/talking with Marley, she seemed amused (in the ‘Uhm, yeah… right.’ kind of way) when I mentioned that one of the doctors at our last visit to KKI said that she felt Marley has Oppositional Defiance Disorder after seeing her for a very short time after a very difficult morning. So, we’re now 2 out of 3 and that definitely makes me feel less crazy. The lab work is testing to link the PTEN gene with macrocephaly and autism.
We received her clinical note in the mail this week and the diagnoses are:
-Fine Motor Developmental Delay
-Expressive Language Disorder
My next step is to approach the school again, and hopefully with a dignosis from two clinicians and thorough notes/specific recommendations from them, the school will help us.
So.. that was our trip… I mean, there was also getting lost in the ghetto, the fight to get Marley to let us draw her blood, getting lost in the ghetto, and stopping for a Cinnabon on the way home only to find out they ran out earlier in the day….. but what’s really interesting is what happened before we left….
A week before we were supposed to leave, Ben went to buy our Lab, Lucas, some more food. He came home and called me into the kitchen. He whispered that he had found a dog that he wanted us to go meet. Now, we were not actually looking for a dog. He’s mentioned casually that he’d like to get a dog for Lucas to ‘train’ since he is over 10 years old and likely not much longer for the world, as he has overcome heartworms, strokes, & seizures in the 6 years since we rescued him from his second rehoming. I, personally, am a sucker for the ‘underdogs’ (lol!) and have brought home a string of strays on their last leg. When Killian was 3 months old, I brought home a puppy from the Walmart parking lot (I had Chloë with me, she’s an animal lover, and I’m a sucker). Unfortunately, after just less than a year with us, I had to rehome her as we realized that Killian was allergic to her and would break out in hives. Chloë was crushed, I was none to happy, but knew that it sure beat keeping her crated all day to keep her away from Killian. She was part shepherd, and as far as we can tell, that’s what Killian was so sensitive to– he had been around our Lab, his aunt’s Lab, and my best friend’s Lab/terrier mix.
Anyway– I told Ben that I would not be going– isn’t this the same man forbid me to bring home another pup after the last went!? I told him that taking Marley was not a good idea if he wasn’t sure, and that he could take Chloë instead. As I shuffled them out the door, I told him to get the application if he thought she was a good fit and that I trusted him– he told me it was already filled out…. That’s when I knew that he was serious about this.
He and Chloë returned a while later and he told me that the shelter would let us know if we were approved by that Tuesday (this was Saturday) and that if we were, we could pick her up in a week after she was spayed.
Well, I took Marley and Killian to the shelter twice that week and I fell in love with this pup Ben had named ‘Bonnie’. She took to the kids, and I was heartbroken to find out she had been there 6 weeks already. Her owners had been notified but they never came to get her. She was found dragging a chain and there was a circle of bare dirt around her dog house where she had been chained. We were approved that Monday.
I could go on and on about how she is such an amazing fit for us all. About how great she has been for Marley. About how you’d never know she was an outdoors pup. About how she looks and acts exactly like my dog, Raven, that I grew up with. I could rave that she goes to her ‘room’ (crate) on command, but how she rarely has to since she doesn’t much care about getting into our food if we’re eating in there. But really… what matters the most, is this…
I realized yesterday that twice now since Marley has been formally diagnosed, I’ve explained her behavior with a quick “she has sensory issues”.
SERIOUSLY!? I can’t win for losing here.
I felt bad when I would stammer “She has Autism…” before we had a formal diagnosis. It only happened twice and one of those times it was to help explain why she was acting like I kidnapped her.
Now I’m beating myself up for not just saying “She has Autism” when trying to explain why we needed to visit a pup outside of the kennel at the animal shelter due to the noise.
Why? Why not just say it? On the flipside, why say it? She’s always been the kid that makes me say, “Oh, Marley!” and has been a bit different. That hasn’t changed with a diagnosis. She’s still the same quirky, entertaining Marley that we love.
Growing up, one of my best friends had Cerebral Palsy. I volunteered with Special Olympics as she competed and enjoyed every minute of it. In high school, I took a class that placed me in an aide type position in the middle school’s Special Education class. As an adult, I worked for two years as a personal assistant to a young boy with Cerebral Palsy. I bathed, changed, tube fed, and read to him. I took walks with him, pushing his chair and talking to him about what we saw. I practically lived there– even staying with him solo for a week while his mom was out of town on a much deserved vacation.
Somehow, despite all of those experiences, I maintained this attitude of “Oh, I can do this, but I could never PARENT a special needs child.”. I even planned to go to college to become a Special Ed teacher, knowing it would mean 8+ hours a day in a classroom with many children with various levels of assistance necessary. Whenever anyone would comment about my job, my friend, or my volunteerism, I would always parrot “It’s not anything special I’m doing– the parents, though, I just am not THAT strong”.
Yet here I am.
Still not feeling ‘worthy’ to claim the title I’ve held in such high regard my whole life. I mean, it’s not really a title that people dream of. It’s not something anyone aspires to. Honestly, the hardest work comes after, not before. You can’t study for it. You can’t prepare for it. It’s like a game of ‘crack the whip’ gone awry. Except it’s not a game. I don’t know that you ever feel like you’re “doing it right”.
Since we got back from Baltimore… and as we prepare to go again… I’m finding that I’m ‘still processing’ all of this. I haven’t found my groove just yet. Maybe it’s because as much as I “knew” and thought I was prepared, I got blindsided by how quickly this has all happened. Not only did I/we put off her behavior for quite some time, thinking we could modify it with time outs & such, but I was prepared for months of waiting and an uphill battle for a diagnosis.
Honestly, not only am I still processing having a name for all those behaviors, but I’m working on something much deeper within myself… I’m working on reaching out. I’m working on asking for help. I’m working on speaking up. I’m working on seeing a blessing as it lands in my lap and instead of saying “Why me!? Why us!?” saying “Why *not* me!? Why *not* us!?”.
After a complete meltdown (“YOU RUINED EVERYTHING. NOW I CANNOT PLAY ANYTHING.” :scream scream stomp use the bed as a punching bag for 10 minutes: ) I challenged Marley (& Killian) to a screaming match of ‘who can squeal the loudest’. Marley won. Killian was a close second.
After that, Marley was begging me to take pictures of her so I encouraged her to make different kinds of faces. First expressing with her eyes, then expressing with her lips/mouth, and then expressing with her whole face.
Head over to the “Marley, stop…” Facebook page to see the photoshoot (as well as other pics I couldn’t resist adding!).