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Category Archives: Marley!

It’s not always an uphill battle…

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….”
My reply?
“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
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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….)

Oh, Marley…

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.

::inhale:: ::exhale::
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.

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Barbie Girl

I feel that I must preface this entry with a few things:

-I do my best not to purchase ‘character’ clothing for my kids. If they have on a ‘character’ piece of clothing or own a toy, it was either a gift, hand me down or on 50-70+% off clearance. I get so frustrated on the markup on character items and do my best not to contribute.

-I do not typically condone or suggest ‘leashing’ your kids.

With those things aside….

Today is the first in three days that the kids have been able to play outside due to Hurricane Irene. Luckily we had minimal clean up and the large branches that fell missed our house. The temperature today is lovely and there is a nice breeze. It’s threatening to storm, but we managed to sneak in about 30 minutes of playtime.

The kids wanted to play with our newly acquired Barbie Jeep. I loathe this thing.

I saw it in our neighborhood for sale and thought about telling Ben, but I ‘forgot’ to (aka came to my senses). However, he walked through the door that evening cryptically whispering to me about wanting to take Marley to go try it out. I agreed.

They came back an hour or so later with the Jeep and word of a new friend. (That’s another post entirely!) What Ben failed to tell Marley was that the $25 jeep didn’t come with a battery and it would be the next day before he could go buy one. That didn’t stop her or Killian from begging to go drive it.

I spent the next twenty minutes pushing the blasted Jeep around the front yard and longer than that calming down the kids after dragging them out of the mosquito infested front yard and into the house.

So far, the Jeep has been anything but fun.

*No trees were injured in the making of this photograph/blog entry.

Marley has a very hard time driving it in our yard and Ben.. well, let’s just say I don’t imagine he’ll be the one teaching the kids to drive. The stick that you use to shift to reverse has to be pushed towards the floor to do so– which makes no sense to me (or Marley). Essentially that is ‘forward’ placement but makes you back up. And Heaven forbid you pull the stick ‘up’ to drive forward– the top most setting is ‘Drive it like you stole it’ and the middle is the more reasonable ‘Go’ speed. Also, the seatbelts are simple straps with velcro that are loose on chubby Killian even at their smallest setting– Can I get a 5 point harness!? 😉

Marley constantly steered into trees, off the curb and into the road, or way too close to our own vehicles. I finally put a piece of painter’s tape on the steering wheel and cut it to a point in a last ditch effort to help Marley understand navigating this beast.

I know, I'm a genius.

So, anyway– I loathe it, but the kids love it/Ben paid for it even though he doesn’t have to ‘deal’ with it.

Today, I had an epiphany.

Yep, that’s a dog leash. What can I say? I’m a thinker! (Bracelet courtesy of  The Whole Network.)

Now, like I said– I don’t condone ‘leashing’ your children, but technically I was leashing the Jeep! We headed out to go around the block and down into another part of our neighborhood. We only made it about halfway down the next street before the thunder started and it began to sprinkle. Of course, this was when Marley was FINALLY beginning to understand how to steer and drive at the same time without crashing into things (& that doing so makes turning MUCH easier).

For your viewing pleasure– here’s Marley in “Park it Like it’s Hot” (a mommy-made original movie).

I’m thinking that with the addition of the tether and the navigation system, ‘The Beast’ could become something really great. It keeps the kids contained on a walk, it gives Marley something to focus on so that she isn’t bored 3 minutes in, it helps me/us learn to communicate effectively with her in ways that she understands, it promotes bonding & sharing by allowing Killian to ride along/take turns, and it gets me out of the house (unless it’s hot. or raining. or muggy.).

Communicating effectively has been a challenge for us– especially Ben. Marley (and kids in general ‘on the spectrum’) operates by a whole other set of rules. She sees the world differently and even being with her nearly 24/7 since her birth 4 years ago, I am still learning to adjust my expectations or rethink how I say/ask/do things to avoid a meltdown or to help her understand/execute something.

Saying it louder/more sternly/with anger accomplishes nothing. Phrasing it differently (in my mind before I say it ‘wrong’ and mess up the possibility) does.

Bargaining doesn’t always work. Sometimes bribing does. Bribing with gummy vitamins to get her to brush her teeth (with toothpaste for more than 3 seconds) twice a day is a win/win!

It’s ok if she wears full snow gear to the grocery store if it means I get to shop.

Allowing her to touch produce I’ve selected (which she is the main consumer of) is completely acceptable and she LOVES it. ‘Sizing’ (weighing) them is like a dream come true for her and allows us to talk about numbers and practice recognition.

It’s ok for her to touch every.single.item. in the craft store. Twice. This does not mean it wasn’t a ‘good’ trip and yes, she can still get a small toy or lollipop at the end.

It doesn’t matter what order she eats her food in, as long as she eats. Of course, it helps that the kid craves fruit.

Letting her wear the same ‘comfy’ clothes for days at a time is totally fine– as long as she changes her underwear.

Shampoo is optional.

It’s ok if she can’t spell her name/draw a square/recite her address/recognize more than 4 letters of the alphabet (M, B, X, O). She’s 4. Do you know what a 4 year old should know?

I often get messages on my personal facebook page regarding help with various mommy issues. Often it is related to breastfeeding. This past weekend a friend messaged me late at night as she struggled with nursing her newborn. They were still in the hospital as the baby was born earlier that day. The momma was in pain and the situation was frustrating. I sent her some information and links. I also told her

” keep in mind that while you are both made for this & you’ve breastfed before, you just met and she has never nursed before.”

Can’t that be said of many things in parenting? Each child is different, and I think that parents come to that conclusion easily enough on their own and adjust accordingly. However, when you’re parenting a child whose basic wiring is so different from your other children/your friend’s children/children you’ve babysat or see in public, the advice holds even more truth.

“keep in mind that while you are both made for this & you’ve raised a child before, you just met __need/challenge__ and (s)he has never lived with it before”

Yes, I know that some of us knew ‘something was different’ for long before a formal diagnosis. I know that some parents that read this may have a child with a genetic condition that was diagnosed before/at birth. You may have read about it or seen it on a tv show/movie. You may have a relative/friend with it. Yes, I know your child has lived with it their whole life/months/years before you found this blog or got diagnosed. But, what I mean is that you just met this need/challenge in YOUR child you are learning TOGETHER. They haven’t lived a life with it, figured it all out or how to navigate the world comfortably and then come back as a child to start over and exhaust/test/frustrate you. They don’t have all the answers and neither do you or I, but that’s ok because the journey is so much more than the destination.

“Marley, stop…”

4.8.11-

A trip to the craft store used to be a challenge… or so I thought. I’m not the most organized person, so really it was my own fault. I used to beg Mo not to touch… not to linger… to ‘keep up’ and bribe her with a $.39 lolli.

I still promise her a lollipop after a ‘good’ trip, but my definition of good has been altered. I have no choice but to be organized and we linger– a lot.

“Marley… stop(!!!)” is said so often that a more confused child may believe it’s their full name… thankfully, My Marley recites her whole name anytime she is asked what her name is and is in no danger of confusing the two.

Today we spent a good 10 minutes in the bead aisles while she touched everything within her reach. The feathers were ‘itchy’. The beads were ‘broken’ (had small pits in the surface) & ‘smooth’. She also noticed a dinosaur that was ‘squishy’, a palette knife was ‘smooth’, boas were ‘soft’.

Then we went to lunch. Whipped cream was ‘soft’. Chicken was ‘chewy’. Drink was ‘tasty & cold’. Fish are ‘squishy’. The fortune cookie was ‘hard & yummy’.

Phrases said that day that I never imagined I’d say to my (almost) 4 year old included : “Don’t put your shoes in your mouth.” & “Don’t put blueberries up your nose.”

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This is a snippet of one day of being Marley’s mom.

A 'crunchy & sweet' lunch.

I wouldn’t trade it for the world.

When Marley was born, everything was ‘typical’. She was a healthy kid until she began having myoclonic seizures at 8 months old. We put her through a battery of tests for months, but nothing came back of any concern. Eventually she stopped ‘tic-ing’. She broke her arm running on carpet in the living room when she was about 18 months old, but the buccal fracture healed uneventfully and she hasn’t had any major problems since.

She was breastfed since birth (until she was nearly 3 & her brother was born) and never did care much for table food. I babysat other children from the time she was about 10 months old and she would gag at the sight of their jarred baby food. She wouldn’t take a bottle, and if she had to be away from me she wouldn’t take formula or pumped milk. When she did finally wean and start eating table foods, she was picky– there was no “just ONE bite” with Marley. If you didn’t want to get vomited on, you wouldn’t force the issue. It wasn’t a manipulation– there wasn’t ‘crying until she vomited’, it simply would hit a point in her mouth and be rejected involuntarily. She could tell the moment a suspicious food touched her lips if the texture pleased her and no amount of begging would get it past that point. I remembered when she was younger being baffled at her ability to gnosh on tortilla (etc.) chips while a simple bowl of mashed potatoes left her gagging as she struggled to eat. I jokingly tossed around words like “sensory issues”, but I didn’t have a clue. When she was so young, we were more worried about her seizures than her (not) eating solid foods (she was always in the 90th percentile for growth, so we had no worries about failure to thrive or anything).

As she got older, the phase “Oh, Marley…” was as common as ‘hello’ & ‘goodbye’ in our house/family. I was concerned about her social skills and my sister in law worked at an amazing preschool 40 minutes from our home, so we enrolled her two days per week with the goal of ‘socialization’ more than ‘education’. Unfortunately, after less than 6 months, I withdrew her. The drive was long, but more than that, from what I observed during my visits, Marley was still playing ‘beside’ other children as opposed to ‘with’ them– and the ‘friendship’ she seemed to have actually appeared to be a love/hate relationship with a girl Marley was constantly tattling on for things like pushing Mo or refusing to play with her.

Marley continued to exist on mainly fruit, pancakes, chocolate milk and ‘chicken on a stick’ from our local Chinese buffet. It wasn’t long before Spring was here and she needed some new clothes. She had suddenly began rejecting everything in her closet as ‘too itchy’. She stopped wearing socks and wouldn’t allow any clothing with graphics, embroidery, or glitter. She became frustrated with her bob haircut and deemed the hair touching her neck and ears to be ‘too itchy’. After 2 different trips to Great Clips it was finally short enough– my sister-in-law (and a young teen boy in the shop) commented that she resembled Justin Bieber. (They were right and she was ADORABLE.)

Shortly after that first hair cut, we attended a birthday party for a friend’s son that I had made the cake for. It was at a large park with many other children playing. Marley would approach these children and introduce her self “Hi. I’m Marley Kirra B(lastname).” and each group would ignore her. I finally prompted her to say that but add ‘may I play with you?’ to it. She continued to be turned down and before the end of the day had even gotten mulch dumped on her head. She did, however, enjoy spinning at warp speed in something that looked like the bottom half of an Easter egg shell. In fact, we began to notice at home that she not only liked to move but that she seemed to need to move. At my grandmother’s house Marley would spin in an office chair regardless of us telling her to stop or slow down. Much to my husband’s dismay, she would jump on beds at home seemingly ignoring threats of early bedtimes or ‘thinking time’. Can’t you just hear us pleading, “Marley, stop…!”? I finally made the connection that maybe she honestly couldn’t stop… and after a few weeks I talked Ben into bringing home a small trampoline for the playroom. When she would get antsy, we’d encourage her to ‘go jump’. Her newest ‘movement’ is running from one end of the living room to the other– and ‘go jump’ does not seem to be the answer to that.

I finally put these last few “Oh, Marley…” things together and Googled until I found information about “Sensory Processing Disorder”. I bought “The Out of Sync Child” and had Amazon send it right to my Ipad. I think it took me 2 days to finish… I read pages every chance I had. I highlighted and bookmarked in the app as I read things that screamed “MARLEY!!!!” at me. I did checklists and made notes. Suddenly, everything made sense. Marley is a nice little mix of a sensory seeker & avoider, but I was able to recognize her ‘Seeking’ behaviors (jumping on the bed, scouring the fridge for a crunchy food or eating marshmallows for their ‘rough squishy smooth’ progression, constantly hugging/snuggling/touching her sister/brother/dad & I) and her ‘Avoiding’ ones (certain clothes, long hair, unwanted touch, changes in routine, transitions, food aversion that meant the only place we could eat as a family was a buffet with tons of options or risk Marley eating only an apple or slices of orange for dinner).

Our (amazing) pediatrician agreed that we were looking at SPD and that I should look into early intervention/evaluation services though out local school system. I also began taking Marley to a local counselor we used in the past for her older sister. Just over a week ago during my time speaking with the counselor we talked about Marley’s singing (& how she could totally be a YouTube superstar), her antics that week at Vacation Bible School (everyone had a story about her and the video of the final night is hilarious) and I brought up Asperger’s. The counselor agreed that she did see some things that may point us in that direction but that it may also be ‘just Marley’. Having a professional validate my concerns was enough that I came home and did some research for myself. There’s no hardcore test online that will tell you if you/your child is an aspie… there are a few that will give you various scores (which lead me to posting the links on Facebook tonight– that was good for a laugh!), but there is no one definitive checklist it seems. There are traits, but your child may or may not exhibit them.

Since Marley LOVES to talk, imagine, and perform (all very much on ONLY her terms, mind you) a diagnosis of something on the Autism Spectrum doesn’t jump right out.

When I consider:

  • her ‘interests’ and the degree to which she talks about/elaborates on them regardless of if a person is actually listening (she loves zombies and will inform you quite plainly that she is a ‘vegetarian vampire’ and just what that means),
  •  her “other family that lives in China” that she speaks of as if they are as real as I am (stating “my other mom bought me a piano.’ as we stroll through Target),
  • her multiple sensory issues (needing to hide, jump, run, eat based on texture as opposed to hunger or taste, touch, etc with no concept of if such a thing is ‘ok’ or not),
  • the fact that she doesn’t actually have a friend or playmate (even as I observe her at the local YMCA she is playing on her own or watching out for Killian),
  • when I look over her preschool evaluation that was done just prior to us removing her and she can identify only 1 letter in the alphabet, no numbers, and each geometric shape she was supposed to copy looks like a “W” had a baby with a ramen noodle.
  •  each night as we struggle with getting her to ‘try’ to go to the restroom before bed (an abstract concept, as she doesn’t currently have to pee and doesn’t understand why she should try),
  • as I walk into Walmart on a 100* August day with a child wearing corduroys+a winter coat + a toboggan AFTER the 2 hour fight to even get her to agree to come to the ‘cold’ store and hear her answer the greeter asking her “Are you cold?” with a flat “No.”,
  • as I remember the past weekend when a neighborhood child came over only to be screamed at by Marley to breaking unwritten rules in a game that doesn’t exist, thinking later into the day when Marley would not give that same child an inch of space and hugged her too tightly repeatedly while the girl stood motionless, the reaction when we finally took the girl home as Marley asked when her ‘new friend can come back’…
  • the fact that she can recall times, places, smells, sounds, and tiny little details that she has no reason to remember and isn’t bombarded with pictures of…
  • that she would wear the same clothes for weeks if I’d let her & in the same token hates being bathed to the point that I have gone the ‘no poo’ route for her haircare
  • she flips if there is the slightest change in plans, even if it is better/for her enjoyment
  • she will often create dialogue for when she speaks to you “No, you are supposed to say __________.”
  • She’s about as literal as Amelia Bedelia and often gets angry when someone’s ‘funny’ analogy makes no sense to her and is/seems impossible

When those kinds of things hit me all at once or little by little, it’s those times when I think that having a full evaluation to see just what needs she has isn’t the worst idea ever.

So.. that’s where we’ve been.. I hope you’ll stick around to see where we go. 🙂

Oh, and if you need a laugh… these are the links to the videos from VBS. Marley is in a white dress (she was NOT putting on an ‘itchy shirt’).

The Island Song (poor kid was battling a rogue visor!)  and He’s Got The Whole World in His Hands (silly visor. the show must go on.)

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