Last May a kindergartner named Alex Barton was voted out of his classroom based on a suggestion from his teacher because his Asperger's Syndrome made him a nuisance in the classroom and landed him in the principal's office often. His mother Melissa started the Tie-Dye project to help connect kids across the world with Autism Spectrum Disorder. Hannah received a T-Shirt from Nigel from Oregon last week and was thrilled. She wants to meet him and play with him! The way the tie-dye project works is after you receive your shirt, you make 5 more shirts and mail them out to other kids (or adults, since adults need love too) on the spectrum. Hannah has 4 t-shirts left to give out. If you or your child would like a shirt please leave me a comment on the blog with your email address and I'll contact you to get your mailing address and t-shirt size. Hannah is really excited about making shirts for other people so please don't be shy about asking for one since I'm worried we don't know enough others on the spectrum who don't already have a shirt to fulfil the 5 shirt requirement.
Sunday, June 28, 2009
We had our first house guest here in Rhode Island this past week. My dad came to visit on Sunday and stayed until Friday. Hannah was so happy to see her Grandpa and it was nice to see a familiar face. We did lots of sight seeing and got to see a lot of neat things. Hannah loved the Mystic Aquarium which she consistently refers to as the "accordion" :) It's a smallish aquarium and we went mid week before the local schools were out for the summer so it was a much nicer experience for Hannah than it potentially could have been if it was crowded. She did quite a bit of running around and dragging us from exhibit to exhibit. We also finally checked out some of the local beaches. We've been to the beach here by our house loads, but we decided to travel to the big beaches along the coast instead of just the bay. Hannah had a blast running up and down the beach and loved the excitement of fighting to stay upright as the waves crashed against our legs. She wore herself out so badly that day that she fell asleep in her car seat on the way home with goldfish crackers in her mouth and still chewing!
Lately Hannah has been doing a fantastic job socially. She's been engaging with other kids her own age, initiating play, and responding appropriately when approached by another child. It's just been so fantastic to watch her blossom these past few weeks. She has been doing such a fantastic job in fact that I had begun to consider the possibility that she was just a late bloomer socially. Maybe the doctors had gotten it wrong when they diagnosed her with asperger's. Maybe all those people who insisted time and time again that she was just quirky and shy were right. All this fell just on the heels of our first meeting with the local school system where they pretty much told us that they didn't feel Hannah would qualify for any services because she tested too well on their academic tests and she was considered too high functioning. BUT THEN yesterday happened and I was painfully reminded exactly why the doctors have it right. Yesterday we went to our city park beach. The weather was beautiful and Hannah was pumped to be out in the sand and water. As luck would have it, there happened to be 3 other 3 year old girls near us on the beach who wanted to play with Hannah. One little girl repeatedly tried to engage Hannah with no success. The poor little girl was so confused and I think possibly a little hurt. Several times I tried to prompt/coax Hannah into playing with the girl or at least playing beside her, but Hannah could pretty much care less about the other girl. Occasionally I'd prompt Hannah to share something she was doing with the little girl and Hannah would obediently do so, but it was much more like talking at the girl with no concern over whether or not she was listening or even looking at what Hannah was showing her. There were several times when the little girl was talking to Hannah and Hannah would just start telling the other girl about something completely unrelated to what the girl had been trying to talk to her about. The thing was though that Hannah was blissfully happy. She wasn't missing this girl's companionship at all. She was perfectly happy doing her own thing. Still my heart broke. She had been doing so well socially that this felt like a huge kick in the teeth. I've been thinking about it a lot today and I've been trying to figure out why it made me so sad since Hannah was obviously enjoying her time at the beach. Was I sad for Hannah because she was missing out on a potential friendship (or at the very least playmate for the afternoon) or was I sad for myself that Hannah marches the beat of a different drum and I'm constantly having to explain that to other parents when they see their children being ignored, brushed aside, or viewed as fearful dangers by Hannah? Maybe I'm sad for a combination of both reasons. Who knows.
Hannah has been doing some amazing (to me anyway) things lately that I had no idea that she was even close to doing. Academically she had seemed to have hit a plateau and hadn't had much interest in reading or writing and I hadn't pushed it. Then, just this last week she sounded out the word "ballet" and spontaneously wrote the numbers 1-4. I know she actually sounded out ballet and didn't just recognize it from another book because she pronounced the "t" at the end. As for the numbers, it's been probably 6 months or more since we've even attempted to write any numbers and then all of a sudden she wrote perfectly recognizable attempts of all four! Then tonight she did something that was a bit odd, but slightly amazing as well. She had some fruit on her plate and one piece was significantly larger than the other. She pointed at the smaller of the two and said "muhroona" small and then pointed to the bigger piece and stated "burawnka" big. It was like she was presenting a vocabulary lesson for a foreign language to Kyle and I only this language was one of her own creation. She's always making up nonsense words, but she's never before paired them with any meaning, at least not that she's ever told us.
PS. By looking at that last picture can you totally tell that autism lives at our house?!? :)
Saturday, June 13, 2009
It's been that kind of week here in the Spontak house. Hannah started the week off right by deciding to "improve" on her new haircut. On Monday while I was using the bathroom she got the scissors out of the junk drawer (not safety scissors I might add, but big, heavy duty work scissors!) and proceeded to cut close to 4 inches off of both sides of her hair while leaving the back untouched. In some areas the hair she left remaining was only about an inch long! Thankfully her hair was in a half ponytail so when her hair is down the longer hair covers the much shorter hair underneath and her handiwork is mostly unnoticeable. She announced the deed to me by coming into the bathroom and stating, "my hair feels shorter." I then noticed the tell tale hair pieces that indicate that someone has just had a hair cut all over her shoulders. I was furious. I'm mostly over it now, but every time I put her hair into a half ponytail I see those butchered locks underneath and I get a little grumpy.
Tuesday and Thursday Hannah had really rough days behavior wise. There was a lot of screaming and refusing to take her time-outs. Needless to say she didn't have a lot of credits left at the end of each day for bedtime privileges.
This morning Hannah came into our room to announce that she had had an accident. She then proceeded to explain to a very groggy Kyle that she had used toilet water (with unflushed pee in it to boot) and toilet paper to wash her legs off from her accident and had also washed her chewy toy off in the toilet and flushed her wet underwear down the toilet! OH MY GOSH! What on earth was that girl thinking?!? I absolutely cannot imagine what possessed her to do that since she has access to a sink, soap, and wash cloth. She also knows where dirty clothes go and knows that nothing besides pee, poop, and toilet paper (courtesy of the bus incident) is EVER flushed down the toilet. UGH! I just had to laugh at this one. I was so tired and just flabbergasted at the whole situation that it was all I could do to keep it together until we got her squared away back in her room. The rest of the day continued to be a struggle as Hannah was defiant all morning and proceeded to run away from us in public places twice in the span of an hour while we were out when she was told to stay close because she was being disobedient. This running away is getting to be a big problem. She's been doing it quite a bit lately, but usually it is just with me. Today she pulled it on Kyle. I'm not sure how to stop it short of keeping her in a stroller or on a leash all the time, but if we do that then she won't ever learn not to run away because she doesn't even have the option to do it so she won't need to control her urges to do so. Any ideas on how to impress upon an almost 3 year old how dangerous it is to run away in public places, parking lots, and streets would be welcome as well as some strategies that have helped you personally to deal with the behavior if you have experience with this issue.
Night potty training continues to go well. She's been dry about every other night this past week which I think is pretty good and most accidents occur in the early morning so we haven't had any more of the multiple accidents in a night incidents like we had the first night. I'm still debating on whether or not we should be waking her up when we are ready to go to bed so that she can go to the bathroom one more time. I'm sure this would help her make it through the night almost every night, but she does make it through the night about half the time without waking her up and she is SO HARD to get to go back to sleep that I can't decide if the lack of sleep it causes her is worth the benefit of her not having as many accidents.
PS. The pictures are from our visit with Hannah's birthmother, Tiffany, and her brother and sister, Chase and Kayla, over Memorial Day weekend when we were back in Indiana. Also, there's one of Hannah with her best friend Evelyn taken during that same trip back home.
Saturday, June 06, 2009
Anyone who knows me in real life knows that I am NOT a girly girl. I've always been a bit of a tom boy, more into horses and books than dressing up, wearing make-up, or pretending to be a princess. In spite of all that, somehow Hannah has managed to catch Disney Princess and ballerina fever. She pines over nail polish, tutus, tiaras, high heels, and princess dresses. I don't know how it happened! I've tried for a few months to hold back the tide of girliness threatening to overwhelm our home, but it's no use. When Hannah started performing ballet moves in the living room and informed me she wanted a ballerina birthday party for her 3rd birthday I just gave up. It's pointless to fight it and obviously it brings her great joy. The huge smile on her face as she twirls around the room and the excitement in her voice as she asks to be read a princess story is proof enough. How can I deny her? Yesterday she picked out the cake she wants for her birthday. If you've been following my blog for awhile you know that I've made Hannah's other two cakes (as well as one for my friend's little girl), but these have all been fairly simple and only required basic stars and a shaped cake pan. The cake Hannah's picked will put my decorating skills to the test. It's a ballerina teddy bear and it's a 3-D cake with a lace tutu and everything! There's not a single star on the cake (really the only tip I'm any good at using!) so this should be interesting. Hannah and I went and bought the cake pan (as well as some other goodies for the party which I'll elaborate on later) today so that I can do a practice run with plenty of time for a change of plans if it become apparent that this cake is out of my league! I'll keep you posted on how it turns out, although if it's bad don't expect to see a picture! Besides the cake supplies we also picked up some ballerina (and princess) dress up items and party props to use at the big event. We came home with 2 tutus, a princess dress, 2 tiaras, 3 pairs of princess shoes and a pair of ballet slippers, a purse (a princess has to shop!), and a whole slew of ballerina wands. We also picked up a few foam soldier swords (think the Nutcracker) for the boys who resist wands and tutus! The funny thing is that so far most of the kids Hannah's age she's met that might be on the guest list for this party are boys! I'm not sure what they will think of a ballerina party (maybe at 2 1/2 and 3 you don't care?), but that's what we're doing. Anyone with any ideas for making the ballerina party more boy friendly feel free to leave me a comment. After lunch Hannah pulled out her new tutu, wand, and tiara and twirled and whirled around the living room to George Winston's tribute to Vince Guaraldi's Peanut's music which was the closest I could come to ballet music (Linus and Lucy is the name of the CD in case you are interested). She looked so happy and even graced us with a bit of real interpretive dance by sitting down on the floor and putting her head in her lap as a sad piece of music ended. It really made me smile to see her so happy even if it was in a tutu and waving a princess wand.
Besides princess mania, Hannah's also been really into drawing lately. She's finally started to draw things that have purposeful strokes and sometimes they are even fairly recognizable. She went from no interest at all in drawing people to overnight drawing the classic portrait of a head with arms and legs sprouting from it! I was actually pretty impressed since my people drawing skills aren't much beyond that (think stick figures!). Her coloring is getting much more precise and she focuses on a page for much longer. I've no clue where she should actually be developmentally in the drawing and coloring areas at her age so she may be way behind for all I know, but if that's the case don't burst my bubble of parental pride just yet. :)
Another skill that has also made a huge leap as she inches closer to the big 3 is throwing and catching a ball. Her gross motor skills are improving by leaps and bounds so now she can actually make adjustments as the ball is coming towards her and catch it much of the time as long as it's not a wild throw. Her balancing and climbing is getting quite good and she can finally alternate feet on the steps now without being prompted and does this about 50% of the time she goes up and down them. Her running is still quite odd and she falls down a lot when she runs, but it doesn't seem to bother her too much unless she skins her knees (although that's been fairly often lately since it's been warm enough for shorts). Trike riding is still an obstacle. For awhile I thought she had finally cracked the code, but alas I fear I was premature. Pedalling that darn tricycle has been the source of many tantrums lately and now she doesn't even want to try anymore.
Oh, I almost forgot! Hannah's cystic fibrosis test came back normal!!!!! Praise Jesus! The testing was fairly straight forward although Hannah screamed for 5 minutes straight as I held her while the electric current (mild I might add, like the kind they use in physical therapy) activated the sweating medicine. The tech told her it would feel tingly like when your arm goes to sleep and it was then that I knew we were in trouble. For some reason, the sensation of pins and needles for Hannah is experienced as intense pain. She shrieks and cries every single time until it goes away. You would think someone was cutting off one of her limbs. Imagine the look on her face when she realized that after the tech finished doing it to one arm that he was going to do it on her other arm!?! The poor little thing was very brave though. She bit her lip, sat on my lap, cried for 2 minutes and then silently sobbed for the other 3.
Night potty training is going pretty well. We've had a few dry naps as well as 2 dry nights in a row in our first week of trying. Unfortunately on a few of the nights she's had only one accident it's been at 5am and she has not gone back to sleep on those days. That's made for some really cranky days since she also has not napped. I'm cautiously optimistic that she'll be able to figure this out and be able to wake herself up when she needs to pee eventually (like before she's in kindergarten) even if that does mean that we have a lot of really early mornings.