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“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.”

_____________________________________

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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5 responses »

  1. There is a phrase in the autism community that goes something like this: “If you’ve seen one autistic kid, you’ve seen one autistic kid.” Autism isn’t a one-size-fits-all disorder. It looks different on everyone.

    We struggled for a long time with the idea that our son might be autistic. We would question it constantly. For instance, he gives us hugs and kisses, so maybe he’s not. But he has no interest in other children, so maybe he is. Or maybe he isn’t because he does interact with older kids some. Or maybe he is because….

    I could go on and on.

    I wish you luck on your journey for answers.

    Reply
    • Exactly. I question all the time. there are moments (meltdowns that are simply NOT tantrums) where it is SO clear that SOMETHING is going on. I really couldn’t care less about ‘the label’, I just want to have access to options that WORK for her… and yes, a label does help others to understand.. or at least gives you something to murmur when they are in a puddle in the floor of a store because “all the shirts are ITCHY!!”…

      Reply
  2. This is Jules too. I have also started researching aspergers and want to have her evaluated. When she was Marley’s age she did the exact same thing with telling you what to say! Amazing and huge vocabulary, serious problems with reading though. She’s 7 so with school things are getting more apparent. I’ve read aspergers can present differently with girls. We might be in this together, Carmen!

    Reply
    • I’ve linked up to a few sites on Facebook dedicated to just that– and there are quite a few books. i’m not sure if the difference is seen at Marley’s age/documented, but hopefully I can fit in a book review soon if I can find one that applies & that I can get on kindle or whatnot.

      Reply

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