Jumping right in... (4y/o girl SPD possible AS?)

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This reads like a novel, but I was trying to be thorough and it is actually the first entry for my attempt at blogging to get this all out.
We know that Marley has Sensory processing disorder, but now asperger's has been mentioned and I am in a constant battle in my own mind about whether to get her diagnosed. If you can make it through the rest of this, I'd love some input! My main purpose for considering an eval is so that in this year before kindergarten, I can work on the areas that she needs to focus on, such as fine motor, etc and get any OT available if she needs it. The list at the end is not an exhaustive one, but it's what I can think of currently and will be adding to if needed.

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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.
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 Killian 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 “Are you cold?” with a flat “No.”, unable to process the abstract intention of the statement (of course she wasn't cold in her eskimo suit!)
-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 in favor of something more fun/better for her)
-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 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.

I think most people would agree that a full eval would be helpful in identifying your child's unique strengths and challenges so you can better understand her and her needs. In fact I don't see why even an "ordinary" child would not benefit from a full eval, since even "ordinary" children have unique strengths and weaknesses and need help from their parents in different ways.

The drawback, as I see it, is that when you evaluate only handicapped children you have the problem that the child is old enough to notice that they're being treated differently: their siblings don't have to go to all those appointments. It becomes extremely important to highlight each child's strengths in your family, instead of letting the handicapped child feel like someone defined mainly by their shortcomings whereas the other siblings tend to be defined mainly by their strengths (I'm not saying your family does that, but Marley will sure get that impression from others in her life as she moves outside the immediate family circle). I'm pretty sure you must be aware of this already, as a loving and concerned parent, but it was worth saying it again.

Ok, that is completely awesome. I would love to hear her description of a vegetarian vampire. And who doesn't love zombies?



I think that a full evaluation sounds like a good idea. Like Molly said...it can't hurt to get a better idea of her strengths and weaknesses. My son's social issues were not as apparent when he was younger, so SPD was the original thought....at about 8, I began to really realize that the SPD did not cover all of the things that I was seeing, and he got the AS diagnosis at 9. A proper diagnosis helped me to come up with some strategies to teach him coping skills for things that I may not have considered. I think it could be beneficial.

Thank you both for your reply!

Molly-- i agree comepletely! I think that's why the whole 'getting a developmental ped' etc makes me take pause-- so many people with thier hands in this little cookie jar. Currently, with the counselor, marley doesn't yet know that not everyone sees a counselor as her older sister sees one due to her father & i sharing custody. In fact, the women have the same first name and Markey was excited to have 'her own Cathy'! Of course, as you said, it will be society who may tend to bring such differences to her attention and as a parent when 'they' cause my child any concern/worry, I hope that in the moment as a parent I am able to help our kids navigate that.

Ming-- yes, zombies are awesome and sometimes i wonder if she was talking about princesses, would i be less concerned....? Lol!
When she woke up a bit ago, i asked if she slept well & she said yes. I then asked if she had good dreams.... To which she nonchalantly replied 'no. I don't have dreams. I'm a vampire and vampires do not have dreams at night.'
I just replied 'ok.' lol!
When she describes being a vegetarian vampire (to anyone. Anywhere. Without them asking.) her speech is this: "i am a vegetarian vampire. They don't eat people and they don't suck blood. They eat fruit and they only eat chicken on a stick or chicken on a bone. The meat they don't eat is people. They don't eat the brain or the bones."

And yes, we love zombies & did the zombie walk last year for the cancer society... But the vampire thing and the 'i'll tell anyone who looks at me about my vegetarian vampirism' cqught me a bit off guard when she stated it a few months ago, lol!

Marley sounds a lot like my son, who I may post about soon.

As an aside, I think this is why girls are underdiagnosed with AS--their "obsessions" (princesses, Barbies, horses) are viewed as "typical" girl behavior, you know?

i totally agree-- this is a constant tug of war for me... 'should i really be concerned'... but i feel like a lot of the things i see on a daily basis escape me when i sit to write. I've gotten so used to her little quirks and intense interest in these things (yes, we as a family love zombies & such) that it's easily written off. I'll never forget the day i realized that her constant grazing in the kitchen was for textures and not specifically because she was hungry. When things like that become so clear, so do my feelings that we need to get her evaluated.

I know it typically says in all the check the little boxes tests that people with Asperger's have difficulty with imagination or would rather read biography than fiction. I have always had a very vivid imagination and so does my son. I write fiction and although I do really love auto and biographies also documentaries....I love fantasy as well. I do tend to like my own stories better than other peoples stories. The man who created Pokemon has Aspergers....no one is going to say he had no imagination.
My daughter has classic autism, she loves to dance and sing and loves it when I make videos of her....makes her no less autistic.