Tuesday, May 14, 2013

And Now About Kitty Bitty...

First off, I have to share these adorable pictures! A few nights ago Kit was having an especially hard evening. She was over-tired, over-stimulated, brokenhearted that the kids had abandoned her to go to bed, really just one big, cranky, teary mess. So Daddy strapped on her sandals (which totally complemented her pjs), and took her outside for a change of scenery and some swinging time. It was the perfect cure! She  was much happier right away and after a little while she nodded off. What a clever Daddy!



Then Sunday he took her out to play while the kids and I tried to whip the house back into shape, but her early morning caught up with her. We may need to get another one of these for inside the house!
She never lets go, and didn't even drop her strawberry :)

Okay, on Friday, I explained Zak's diagnosis, and I'm back now to explain what it has to do with Kit.
Kit is likely not going to receive an official diagnosis anytime soon. However, my concerns have been growing for months now because of certain behaviors that she has either always displayed or has more recently developed, and areas that she is either lacking or has regressed. I already had some nagging worries before Zak was diagnosed with Asperger's, but now I feel even more validated in my desire to get her on the right course for evaluations, therapy, whatever, to make sure we form vital brain pathways and fortify the existing ones as soon as possible. That is proving easier said and read than done.
I will describe my areas of concern first and then I will elaborate on why we may find ourselves on our own as far as early intervention is concerned.
Obviously one of the biggest areas that we struggle with is her sensory issues. She has very strong seeking tendencies, yet she has some sensitivities as well (like to clothing and touch sometimes), and she craves deep pressure a lot! This combined with her irritation of most coverings is why she sleeps with a couch pillow on top of her instead of a blanket. And her frequent need for oral stimulation is why I allow my 20 month old to chew gum (while supervised) since that is the only way I have found to sometimes keep other, far less desirable things, from entering her mouth. (And believe me, I have tried a lot of different ways. It's either gum or lollipops, and the gum is sugar-free and doesn't usually end up sticky everywhere. She knows that if she takes it out of her mouth and starts to play with it, she looses it. She even goes to the drawer and asks for it now.)  And as can be seen in many pictures throughout this blog, she LOVES to swing!
Now, please keep in mind, that a child can have any degree of sensory processing issues as an independent condition. Studies show that close to 85% or more of individuals on the Autism Spectrum have sensory processing issues to some degree. However, some 50-60% of individuals with sensory processing issues have them as an independent condition. So it is possible that this is the case with Kit, but I am now much more doubtful of that.  
She has an enormous amount in common with her brother in the way of personality, behavior, and emotion. That could of course simply be circumstance, genetics, and even imitation, but I'm kind of in doubt of that also. Except the genetics part. I think genes do play a significant roll here, even though from everything I read there is only a 5-10% increased chance that a female sibling will also turn out to be on the spectrum (25% for boys). I think that statistic is likely quite higher in reality, but because, like ADHD, the symptoms in girls can present differently, they might not appear as worrisome, especially in the absence of a speech delay, as is often the case with Asperger's.
The things that concern me, however, have more to do with the unique behaviors and quirks that she displays that were absent or at least far less obvious in her brother's early years. One of them is her "stimming" behaviors.  
I will write a whole Wordy Wednesday on this soon to explain it more in depth, but here is a brief explanation. "Stimming" is short for self-stimulation, and almost everyone does it to some degree, as it helps provide a measure of self-regulation. If you bite you nails when you are worried or stressed, if you shake your foot rhythmically when your legs are crossed, or twirl your hair or bite your lip when you are deep in thought or bored, you are stimming. Where this crosses into the realm of concern is when babies, children, or even adults do it excessively and in "odd", or less socially acceptable ways, like hand-flapping, extreme or uncontrolled facial ticks, rocking, head-banging (not necessarily violently), rolling, spinning, pacing or running in circles, or repeatedly producing vocal sounds or phrases (called vocal or verbal stimming). This is common among those with autism and those with Sensory Processing Disorder (SPD).
So, back to Kit. Yes, she clearly displays and has been displaying a variety of stimming behaviors for quite some time. She used to engage in hand-flapping a lot, but this has lessened quite a bit since she has become independently mobile. She did it a lot when she was tired or anxious (like when I left the room) or when she was really excited (like when Zak or Grace would enter the room). She still does sometimes flap, but it is usually only when she is really excited.
Another one is one is her spinning. She used to sit on the floor before she could crawl or walk and use her feet to turn herself around in circles. At the time we just thought it was cute and that she had found a new game. Not too long after she learned to walk (at 10 1/2 months) she started to walk, and then run, in circles. When she is by herself and doing this she often hums (more on this later). But when her brother, and sometimes her sister are around it becomes a game of circle chase, and she squeals and laughs as she runs. She especially likes to be naked while she prances in circles, and so will, almost daily, wiggle out of whatever clothing we have managed to wrestle her into for the day, including her diaper, as often as she can and then =RUN...around and around. She loves the spinner we purchased several months ago, and especially likes to scoot forward and drag her hands along the floor as she spins, not to stop herself, but to feel the texture of the floor as it goes by.  
She also used to push blankets or pillows across the floor with her head, propelling herself with her feet or crawling, but she doesn't do this as much anymore. She also used to just lay down and press one side of her face to the hard surface of the floor. She wasn't sleepy, but it obviously was relaxing for her. She still does this occasionally too, but not as often. She used to grind her teeth, which I am soooo thankful that that one seems to have disappeared on it's own. Ugh, it would just send shivers up my spine when she did it! She has gone through periods of head shaking, and head banging, but against people mostly. She especially favors head banging right into the hollow between my shoulder and neckline, and if I'm caught unaware, it really hurts! She has a shoulder shrug that I used to think was just an imitation of us saying "mm-mm-mm", which is our family grunt for "I don't know", but I notice that she does it usually multiple times in a row and, again, more often when she is tired, anxious or happy, more like a tic.
Her most obvious for the last few months has been a particular bounce accompanied by repetitive growling. That is the closest I can describe it. It's usually a short harsh exhale of a growl for every two bounces, or bounce stomps if she is doing it while she is walking. The big kids think it is hilarious, and when they laugh, she smiles and continues more, but she does it frequently when they are not hanging around her too.  And her newest additions are repetitive hair tugging (hers, though she still likes to pull ours a lot too, mostly Grace's), an odd little scalp scratch/massage (?) where she opens and closes her hand quickly and repetitively at certain places on her head or face sometimes (it's hard to describe), as well as repeatedly opening and closing her mouth with her jaw firmly tucked against her chest. As you can see, four paragraphs later, she displays some stimming behaviors.
Moving on now to the area of speech. She has definitely regressed in this area. When she was around 12-14 months old, she had a vocabulary of probably at least a dozen words, including names for her siblings, and at least one phrase: "love you". She usually said it to me, and when she did, she would say, "love you mama". Her speech was very clear and understandable for the words that she knew.
She has also always hummed and sung, but for several months between the ages of 8-12 months, she had several distinct tunes that she would sing, often repeatedly. One was the opening notes to Beethoven's Fifth Symphony. Only she added her own words. She would walk around the house singing, "MA-MA-MA-MAAAAA". Sometimes loudly and emphatically, but usually just above a whisper. The notes were always in tune with each other, and if I sang the next notes, she would repeat hers again, in tune. I assumed she had picked this up from hearing us playing it at symphony practice to which she accompanied me that whole season. Maybe so. 
When she wasn't singing Beethoven, she was singing the main six notes to the Mission Impossible theme (the fish in The Lorax sing it, and so Zak was playing it on YouTube repeat at the time). You know, the high to low notes, "DA-DA-DUhhhhhh....Da-Da-Duhhhh". Well, she picked up that little ditty as well, and would chant that everywhere she bounced. She also learned the famous, "Ma-na-ma-nah!" from The Muppets. And to top it all off, whenever a particular person would call Daddy's phone, it would play the Emperor's March from Star Wars. Daddy usually answered right away so it would only play the intro, "Duh-duh-duh...", so Kit would finish the musical phrase, "...duh-da-duh...duh-da-duh". The kids, for fun used to sing these just once, or sometimes, just the first few notes, and she would take over, usually bouncing her head and body to the beat. (She, just like her brother, can find the rhythm of a ceiling fan and bounce to it.)
Sometime after 14 months, around November of last year or so, all of this lovely singing just kind of faded away. So did her "love you mama", "Daddy", and her names for the other kids, along with a lot of her other words. She never stopped saying "Mama", or "hey", and she didn't stop babbling, humming, or making emphatic sounds and gestures, but things had definitely changed. I didn't notice right away, I guess because she was so busy, and life is so busy. When I did begin to notice, I would try to get her to say things by prompting, pointing, and being excited. She would smile and clap or point, but not say the words. Sometimes she would look at me with a very puzzled gaze, as if I were trying to get her to speak Martian. I became concerned. I tried not to excessively worry. We were on the waiting list to see Dr. N at the time, so I told myself, just be patient, it will come back. Her hearing is clearly fine though, she responds to even whispered instructions.
In the meantime, she was clearly frustrated and would whine or cry for things, especially if we couldn't figure it out right away. I remembered Zak being so frustrated as a little guy when I couldn't figure out that he wanted a drink, or something to eat, though he was a little younger, and I started teaching him signs. He picked up on it instantly, and he was so happy to be able to come ask me for "milk" or "eat" or to sign "dog" whenever he saw one. So I started teaching Kit signs. Like her brother, it didn't take her long to figure out that this works, and she was happy to sign "please" instead of just crying whenever we would take a drink and she wanted one too. About that time, my sister loaned us her Baby Einstein "First Signs" dvd, and that instantly became Kit's favorite movie, still is. She knows almost every sign now, and while she still sometimes whines first, when we ask her to say it, she will sign it.
She has finally also started to say some words again that she used to. She says "Dada" now instead of the clear "Daddy" that she used to say, but we are just happy for her to say it. A few other words she says now include: hello, hi, WOW, ow, mo (more, said as she signs it), li (light), ball (now with or without the sign), nana (for banana or for my mom), bye-bye, ni-night, the parts of her face (in English and a couple in Spanish), and her newest ones, moo (move, usually said while pushing her brother or sister), miy (mine), and just yesterday she learned "pu-py'', and as we read one of her favorite counting books, I asked her to say eight, and she said "nine". I was very exited.
But she still doesn't say any version of her siblings names like she used to. She says only the first two letter sound for almost all her words. She will apply what ever word we tell her (that she attempts to repeat) to everything on a page, or the name of the last person she pointed at to everyone else, even though she can clearly point out what's what and who's who when we say the correct word or name. I have no idea if that is normal or not. And she doesn't even attempt to use two word combinations, except the one below, though she is starting to sign a few with reminders and prompting, like "drink please". But the most wonderful thing that she expresses once again, is her love! She squeezes her little fists tightly across her chest and then points at me, or Daddy, and utters "Iiiiii blumblalumbaaa ooooo!" It is heart meltingly, adorably, and utterly heavenly!
I hope that the regression was a phase, but I'm worried it is a sign of something else going on neurologically.
And now on to her play skills. To begin with, she has always had very little interest in toys in general. She has had just a select few favorites that I could say she ever actually played with. I used to say that she knew when it was a toy, because she would examine it carefully, give it the mouth test and then toss it aside. She would typically end up "playing" with household objects. I would give her clean empty water bottles, which she played with way longer than the toys. She was fascinated when I would make shakers out of old spice bottles, or the plastic storage containers with the snap on lids, with a few beans or a little ball inside. Yet, she didn't like rattles. She would chew on a plastic lid, but not on teething toys. And she has always had such a thing for jewelry. She used to look a person up and down and if they had on some delicious looking jewelry she would let them hold her, but otherwise no way.
The largest extent that she played with her toys was to take everything out of the container one by one until it was light enough to dump the whole thing. Then she was done, bored. There were a few that crackled or rattled that she would hold on to for a little longer, but not by much. It was usually the container that she was more interested in, and as soon as she could figure out how, she was crawling and climbing into those, then out, then back in. She was far more interested in the pulls on the drawers and our toes than in any real toys. She liked a couple of things that were the big kids that we kept on hand or in the diaper bag to help keep her busy. But usually all she ever really wanted to do was climb or bounce on Mommy (when she wasn't nursing), or try and get our phones or the tv remote, or the Nintendo DS or the MP3 player (she still loves electronics). 
At 10 months her favorite toys were her hairbrush, one of our old flip phones (with the battery and everything removed), a couple of dolls, and her brother's monster trucks. These she liked to examine and hold mostly. She only liked pacifiers when she was teething to bite on, or if it was another baby's, then she was interested. She was always interested in whatever the kids were doing and loved taking things away from them, hold it tight, and as soon as they had moved on, she would toss it aside as well. She does like things that make noise, but Victor and I really don't, so we have very few toys that play music, and only one that makes any kind of sound effects. These would hold her interest for a bit longer. 
Even when I would sit down and demonstrate how to play with toys, she would smile or laugh, and occasionally imitate once or twice, but then she would just crawl into my lap and push away anything we offered. The kids were always great entertainment, and she would hand them toys or crash their towers, but she still didn't do much play herself. It has always been a pretty unusual, but welcome, thing for her to just start playing with toys by herself.
One thing I was recently reminded that she likes is rolling cans along the floor. She likes to roll it back and forth with her hand a few times, then roll it and let it go, then go get it and do it again. I kind of forgot about this one because I finally put baby locks on my cabinets (I was going nuts with her pulling everything out everyday, and then having Grandpa putting it all in weird places!), so she didn't have access to the cans as much anymore, but I saw her doing it again the other day after grocery shopping.
Now her favorite toys are almost any kind of ball, dolls, and books. But she doesn't like story books, she likes fact books like the 100 First Words, counting books, books with real photographs, or any book that is identifying objects. The other day after reading her probably six books already, she brought me a Backyardigans book. After the second page, she slammed the book shut, jumped down and tossed it next to the book box. She brought back her new selection which was a book about kids with photographs of them as babies and then around five or six. I said to her as I pulled her onto my lap, "what, you only like non-fiction?" which elicited quite the laugh out of her brother.  
But now that I think of it, those were Zak's favorites too. But he would also let us read anything to him, especially after about eighteen months. Grace enjoyed those books, but she loved to have us read certain stories over and over, but when she was Kit's age, she was usually content to listen to whatever Zak had picked out. She didn't start really preferring certain books until closer to two and a half. Kit also loves photo albums and magazines with animals, primarily birds. She has a thing for birds, which might simply be because we have two parakeets. The one fictional book she will let us read to her is a Dora book, and I think she only likes it because there is a bird on almost every page, and several other animals on the last page which she makes us name about twenty times each time we read it.
What she does like to do is move! She always love games that involved movement, swinging, tickling, peek-a-boo,  and bouncing. As soon as she could pull herself up, Kit started climbing. Thankfully she was pretty short and so for a while there was a lot that she couldn't really reach. So she was pretty content to just pull everything out of all the cabinets for a while. But it wasn't long at all before she started moving things around to help her climb and reach. I am sure she learned to crawl for the sole purpose of being able to get to me where ever I went, and that she learned to walk in order to get to me faster. But she loves playing chasing and wrestling games with the kids. Just as long as she doesn't loose sight of her mommy for too long.
All she wanted to do for months was be held by Mommy. She was fine as long as Mommy had her, and her world just crashed whenever Mommy left the room. Though she would tolerate the swing for naps sometimes. On more than one occasion, out of absolute necessity, I would have to be gone for more than an hour, and she would cry herself to sleep. This has only really improved in the last six months. Now I can leave the house, and as soon as I'm gone she can be distracted enough, and have a good time with Daddy, but she does start her Mommy whimper after a few hours, or not to long after waking up either for the day or from a nap. She really likes me to be there when she wakes up. Her separation anxiety is sometimes my attachment anxiety!
I mistakenly just assumed that she might just have a preference of not playing with toys, since she seemed very aware of how things worked and her gross and fine motor skills seemed to be on track. But I have been doing some reading and watching videos about toddler therapies, and behaviors that merit concern. So I have been trying to get a better idea of how well she actually plays, or what her lack of play skills really are. Several things I have noticed.
  • One, I really didn't know her skills or lack thereof because I haven't made any big pushes to encourage her to play with real toys.
  • Two, she can so some things, but seems to really prefer not to. Like stacking blocks. She can stack six or more, but she really doesn't seem to like it. She really just wants to scatter them, and dump them. She also discovered that she likes to put a couple in the Bilibos and swirl them around rhythmically. She will however stack the canned goods, and the play-dough cans quite happily. Announcing "Tadaaaa!" when she makes a lovely tower.
  • Three, she often tries once, and if it doesn't work, she abandons further attempts. 
  • Four, if I encourage her to keep trying she will, but she wants me to help her. This, I learned, is called hand-over-hand play. 
  • Five, she likes to sort out her favorites.
  • Six she will dump and refill repeatedly. (see pics below)
  • Seven, this one isn't new, but she isn't loosing interest either, she LOVES to scatter, and throw things. She can throw anything overhand with ease, and she often cannot seem to stop herself even though she really does seem to know that she will loose the toy or the sensory bin will get put away, etc.
  • Eight, she is starting to line things up.

This was the first time in a long time that she has played with the cars. The big kids haven't played with them much so they have been in the closet for probably a couple of months.


She saw her sister grouping the colors together to make "families", but Grace didn't line them up, she just kept them near each other. Kit kidnapped the red family and put them in line.
Sorting out the Puff Balls.
Dumping, then sorting out, then dumping, then refilling. She did this for over ten minutes.

And lastly, the ever important eye contact. I have had trouble finding out what "appropriate" eye contact is for a toddler. And Kit is confusing in this department. There were months as a baby, when she would look at me, and times when she wouldn't, but often she would not look at her daddy. He would hold her up and she would turn her head, so he would turn her body so she was facing him again, and then she would turn the other way. Finally she would look at him ever so briefly and sometimes smile at him. But he asked me on more than one occasion why she wouldn't look at him and if she was ok because of that. I though she likely was, because she would have moments of long eye contact with me and sometimes with the kids. And eventually, she did start to look at him more often.
But she does tend to look away a lot, and when she is looking in our direction, she looks at our mouths a lot. But then there are times when she makes a lot of direct eye contact, so I don't know. And as with so many other things, I didn't notice any lack of eye contact with Zak until he was much older, really only in the last two years or so. So this is one symptom that I think has enormous variations from child to child and person to person. She also has never had any trouble with pointing, or joint attention. She will even use her hand to push my face in the direction she is looking, and she wants me to watch the birds out the window for as long as she wants to.
So what does all this mean?
Sigh...I don't know. It is difficult to say, because technically she isn't delayed in any areas. We had a lady from Early Steps, this state's Early Intervention program, come for a screening last week. Well, Kit was very shy, and very tired, so as a result she never said a single word the entire time, and she refused to perform several skills tests such as stacking three blocks and scribbling. Now I have seen Kit do far beyond what the screener was asking for, but Miss L had to officially see her do these things, so she ended up appearing delayed in the areas of speech and motor skills. This is not a bad thing because now Kit will get the full Autism evaluation, a much longer and more in depth evaluation with a trained analyst.  However, I have no idea what Kit will decide to show or refuse to do during that one. I also don't know exactly everything they are looking at. From what I can discern however, unless she proves delayed in at least two areas, she will not qualify for services. And since I know that she is capable of performing those tasks, she might not get help for the behaviors she does display.
There is an ABA therapy program locally, but insurance doesn't cover it for either of the kids, and there is no way we can afford the recommended weekly amount for both kids. It would cost several thousand a month! They offer a parent training program that I need to gather more information on to see if this might prove to be a future possibility. Right now, though, I'm just trying to learn more about Asperger's, and High Functioning Autism so that I can better help my kiddos. And I'm very aware of the fact that I may need to just research and or develop as much as I can in the way of our own home therapy. Anything will help us make a lot more progress than just waiting until they are older or, we get richer. HA!
With Zak having Asperger's and not displaying many obvious characteristics until he was older, I have a hard time believing that Kit isn't somewhere on the spectrum also, displaying as many characteristics as she does already, though not having other delays. 
I do know though, that I have a spitfire, sharp as a tack, cuddly little monster/tornado that I love to absolute bitsums!!! Her cheekies are edible, and her smile is gorgeous. And I am blessed far beyond deserving with all three of my always amazing, yes, sometimes infuriating, but NEVER boring, downright awesome kiddos!! So, we are good.
Chillin' out with Brother, and a good work of non-fiction!

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