Big Changes

Big changes have happened since I last wrote. We've headed back to school. Hannah got ANOTHER office referral at school. We finally got our evaluation date scheduled for the severe behavior clinic. We got Hannah's newest set of diagnoses (ADHD and Oppositional Defiance Disorder, Aspergers is still waiting to be ruled out or in by the severe behavior clinic) We started a new behavior plan with the help of the current psychologist. Our foster care license finally cleared AND we got our first placement! That's A LOT to happen in 2 1/2 weeks!

Now that we've actually begun accepting foster care placements I can't really talk about our lives with those kids and how that relates to Hannah and our lives on this blog anymore since it's totally not private. I'm going to continue to write on here about day to day stuff and Hannah, but I will also start up an anonymous blog where I can chronicle our foster care journey. If you are at all interested in reading that blog please leave me your email address in a comment and I'll email you the address to the new blog since I don't want to post it on this blog and have the two connected and the wrong people find out who we are in the new blog.

Ok, back to Hannah. Hannah's new behavior plan is interesting. It's too soon now to tell if will do any good, but one thing is certain. . . . she DOES NOT like it. It is essentially a psuedo grounding of all privileges where a chore is given as a consequence that has to be completed before the grounding is lifted. Basically she chooses how long the grounding lasts by how quickly she decides to get the chore done. There's also a positive reinforcement piece to it as well where she earns small rewards (special time with mom or dad, tv time, computer time, etc) randomly for being obedient. Along with this new system (which the psych calls the Job Card System), we were also taught a safe hold to use when she becomes aggressive which has been happening more and more lately and had become increasingly difficult to manage because she is getting so big and so strong. I don't like the thought of having to use restraint in any form, but I have to admit the few times I've had to use it everyone has been a lot safer. We'll keep everyone posted as things continue along. I'm sure things will get even more rocky before they get smoother especially considering the big changes that have happened in the house.

Photo Notes: These pictures were from a Daddy-Daughter project that Kyle and Hannah are working on for her room. It's still not finished yet, but hopefully soon it'll be done and up on the wall. I'll be sure to post a picture of the finished product when they get it done.

Rough Week

It's been a rough week around here. It started on Monday when Hannah's cough had reached the point that I felt like I had to take her to the doctor. We went in and found out that she had bronchitis and a double ear infection. The ear that still had the tube wasn't draining like the tubes are supposed to help it do and the doctor said the tube was crusty looking and gross. So, we went home with a script for 2 weeks of amox-clav and orders to keep her quiet. Ha! Fat chance! Hannah is one of those odd kids who, instead of becoming lethargic and restless when they are sick, goes into hyper-drive. She becomes even more active than she normally is and it's next to impossible to keep her still. Even the promise of PBS kids or a movie isn't enough to keep her still for long.

Later in the day we had to go to Omaha to pick up her new orthotics and have them fitted. Luckily, they were able to get them into her current shoes so we didn't have to buy new sneakers. I was worried about this since I had just bought her new shoes only a few weeks before we had the appointment where the doctor ordered the orthotics. I really didn't want to shell out money for new shoes this close to the holidays. Upon arriving home Hannah had a spectacular meltdown when I suggested she wash her hands. In fact, she raged. I was barely able to get her upstairs to her bedroom to chill out and once there it was basically impossible to keep her in her room. She kicked her physical and verbal aggression up several notches from normal and for the first time I was almost frightened of her. It took over an hour to get her calmed back down. To find the silver lining in this incident, I was able to video a good portion of the ordeal to take with us to the psychologist the next day.

Tuesday she was cleared to go back to school, but we had to pick her up early for our first appointment with the new psychologist. Armed with my video from the night before, her previous psych report, teacher emails, IEP, disciplinary referrals, report card, etc we marched into our meeting. After studying our paperwork, speaking with us, and watching the video the psychologist came back into the room and told us that we needed to be referred to the Autism Center's Severe Behavior unit for their outpatient partial hospitalization program. We were floored. I knew things had gotten bad, but I had no idea we were now that far from normal 5 year old behavior. She also said that her initial impression of Hannah is Asperger's Syndrome. So, yeah, we are back to that again. I'd been thinking I needed to rename the blog since the last psych took away that diagnosis, but it looks like it may be coming back. The doctor also said that she WOULD continue to see us (and Hannah) if we wanted, that she wasn't just handing us off because she didn't want to work with us, but that she thought progress with her would be much slower and that Hannah needed more intensive help than she was able to give her. We were sent home with a phone number to call and a packet of forms to fill out.

Wednesday was rough, but manageable. Thursday started off ok, but there were issues right before we left for school when Hannah tried to smuggle books to school by shoving them down her pants. A battle ensued to attempt the removal of the books and the drive to school was not happy. Swim lessons on Thursday were awesome and Hannah made a lot of progress, but then after the lesson in the locker room all heck broke loose. Hannah got angry for some unknown to me reason and started shouting mean and disrespectful things at me. If I tried to touch her she'd hit me or swat my hand away. It was SO LOUD and it echoed all throughout the locker room. Every eye was on me and I was terribly embarrassed. I know I shouldn't care what others think of me and my parenting, but seeing all those eyes on me judging it was hard to fight back the tears that wanted to come as I struggled to contain Hannah, get her dressed and just get the heck out of Dodge.

Friday morning (today) started off rocky from the very beginning and only got worse as the day wore on. Hannah didn't want to get ready for school and was insisting she had already brushed her teeth when she had clearly not done so (sink and toothbrush were both bone dry!). Instead of fight with her over it, I simply told her that I would just go over them to be sure she had done a good job. She wasn't going to have that at all and got extremely aggressive. In the end she did a number to both me and the bathroom, ripping the drawer out of it's cabinet and the door stopper off the wall and head butting me so hard that tears came to my eyes. I eventually got her calmed and ready for school. I thought it was all in the past. She seemed ready to go, but just after lunchtime I received an email from the teacher saying that Hannah had spit in another student's face at lunchtime. She was sent to the principal for another "detention" during recess. She apologized to her friend, but I fear damage may have been done to that friendship because Hannah said that the little girl told her that Hannah wasn't her friend anymore and that she wouldn't talk to her or play with her for the rest of the day. I can't say that I blame the girl, especially since she had done nothing to provoke the spitting. The thing is, Hannah REALLY likes this little girl. She talks about her ALL the time. She's calm and reliable and a good influence, the perfect friend for Hannah. I have NO IDEA why she would have done something like this to her friend and apparently neither does Hannah.

As the week has wore on I find myself wondering more and more if maybe the psychologist was right, maybe this program she speaks about really is the right place for us. Maybe, just maybe, this could be where we can finally get some help. The only drawback, it's an 8 week program and Hannah would have to be pulled from school for that time. I don't know how I feel about that. Obviously she won't fall behind academically, but I worry about the disruption to the school routine and the loss of relationships that she has started to build with her classmates. It's going to take lots of prayer to decide what to do about this.

Photo Notes: Pictures were taken in November at a park near our house. The cat in the last picture acted like a dog and followed us around EVERYWHERE we went. It even came when called. It was SO FRIENDLY. Hannah was convinced it didn't have a home and that we needed to take it home. To tell you the truth, I wouldn't have minded having it, but a cat that friendly had to have owners so we went knocking on doors in the neighborhood near the park to see if anyone knew who the cat belonged to. We eventually found the owner, but they were totally unconcerned that their cat was across the busy road wandering in the park. That made me sad. He was such a sweet cat too.

And the Results Are . . . . . .

Sorry it has taken me so long to post the results of Hannah's evaluations, but I've been in the midst of processing all that we learned-that and we traveled to Indiana for 9 days. Basically what we found out was that Hannah does not have enough clinical diagnostic criteria to receive a diagnosis of Asperger's anymore. She has simply grown out of it. She apparently still has many aspie traits and is "quirky", but not quirky enough to be technically on the spectrum anymore. Maybe I need to change the name of my blog again. Too bad. I really liked the title M came up with. I may just keep it anyway. She also does not have enough diagnostic criteria for ADHD or Bipolar, but she has too many red flags for each of them to rule either of them out at this point. Those two are on a watch and see status at the moment. She'll be reevaluated for them in a few years (or sooner if we have new issues crop up). Her behaviors are, however, abnormal. They are abnormal in intensity, frequency, and duration. They are abnormal enough they warrant a diagnosis, but don't fit any particular diagnosis. Therefore she gets Disruptive Behavior Disorder-NOS (not otherwise specified). You have to love that NOS catch all moniker. It was recommend that we work with a behavioural therapist to get her negative behaviours under control and to help teach her how to manage her strong emotions. The psychologist specifically mentioned that we should try 123 Magic (and The Active Alert Child) as a starting point while we are waiting to get in with a therapist. We've bought the book and implemented phase 1 of their program. Kyle thinks it is helping. I'm still up in the air about it. After all of our failures with other methods I can't help but be critical until proven otherwise. So, none of this that the psychologist told us surprised us too much, until she got to the final portion of Hannah's evaluations-the IQ test. Here's where we were in for the shock of our lives. Now, we knew Hannah was smart. We knew she was academically gifted in reading and had extremely precocious verbal language skills. What we did not anticipate was that Hannah would test as profoundly gifted, into the highest level of giftedness possible, that she would score higher than 99.7% of the population on her test! That threw us for a loop. How do we even process that kind of intelligence? We knew our local public school wasn't going to be right for her, but now we have to wonder if any of the private schools will be able to accommodate her long term even. The only gifted school even close to us is well over an hour away and charges over $25,000 a year for Kindergarten! We obviously don't have that kind of money. According to the psychologist, Hannah's extreme intelligence is currently working against her instead of for her with regards to her behavior. The Disruptive Behavior Disorder-NOS and her IQ have melded together to create the perfect storm. So, we are feeling out our options and having to learn an entirely new path. Anyone who has been down this road before us is encouraged to comment and help me out. Lord knows I could use the help.

Photo Notes: The first two photos are of Hannah trying out Daddy's mountain biking gear in the back seat of the car. It's one of her favorite car trip activities! The last photo is of her being silly while I tried to take a serious picture of her painting. She was concentrating so hard I wanted to capture the moment, but she has a tendency to get wild when the camera comes out so we have very few serious photos!

New Psychologist

After the fiasco of the last psychologist we searched long and hard before finding our newest doctor to help us better parent Hannah. We first went to meet her without Hannah and discussed our concerns. I felt like she really listened to us and asked all the right questions. Her next step was to set up an evaluation for Hannah, as well as send us home with a HUGE packet of questionnaires, check lists, and rating scales to fill out about Hannah as well as some for her teacher at preschool. I brought almost 2 hours worth of video containing the behaviors we were concerned about and the doctor promised to watch it. Then she went over the things she felt were the most likely culprits for Hannah's behaviors. Her list was long and scary and she said that everything on it needed to be ruled in or out before we could create a plan of action. On her list to check out were Asperger's, ADHD, Oppositional Defiant Disorder, and Early Onset Bipolar Disorder. Asperger's doesn't scare me. We came to terms with that almost 2 years ago. The problem is that Hannah no longer seems to be exhibiting a lot of the symptoms that were the key diagnostic factors for it. She still has many "aspie traits" but I have a feeling she no longer qualifies for diagnosis. Her problems are different now. She cannot handle having limits set and has grown quite aggressive, manipulative, and very moody. Now that all the testing is done we are just waiting to get the call to come back in to discuss what the doctor has found and what her opinions are. I'm anxious about what we might hear as some of those disorders she listed feel quite scary to me and require life long medication. However, at the same time I'm ready for an answer so that we can get on our way to helping our little girl.

Evan and Catherine

This is a bit late in coming, but we have a new addition to our family. A few weeks ago Hannah attended a birthday party for one of her classmates. The theme was a carnival and they had all sorts of carnival type games and carnival type snacks (cotton candy, corn dogs, popcorn, etc). In lieu of the traditional goody bag for the guests (which I never understood anyway) the hostess instead gave out goldfish to her guests! While I appreciate the sentiment and think it was an awfully creative idea, certainly better than the junk that usually comes in those goody bags that goes directly in the trash, a fish is a living thing! You have to take care of it, feed it, have someplace to house it, etc. We had none of the appropriate supplies and had to go out the next day and get fish products to welcome our new family members. Oh, and did I forget to mention that we received not one, but two fish? Anyway, Hannah decided to name her fish Evan and Catherine. We went out the next day after church and got a tank and some food and went to work getting set up to be fish owners. Unfortunately Catherine never made it to the tank. In fact, she didn't even last 24 hours! I expected Hannah to be quite upset about it, but really she took it pretty well. Evan is now happily living in his new tank is actually quite the entertaining fish. I have never seen a goldfish as hyper as he is. Maybe we got a fish with SPD! You should see this fish eat too. When you drop the food in the tank he dives and grabs at it like he hasn't eaten in a week! It actually makes a splash of water at the top of the tank! Do you think this means we aren't feeding him enough? We're giving him the amount of food the container indicates. All in all, this hasn't turned out to be as bad as I thought it would be, but just in case you are thinking about giving out fish at your next birthday party, I'd advise against it unless you want to make enemies out of all the parents!

Last weekend we had our second house guests of the season. Our friends Sarah, Jason, Evelyn, and baby Vivian came to stay for a few days. Let me tell you, Hannah was PUMPED about getting to see her friend Evelyn. She counted down the days on the calendar and tirelessly told every person she came in contact with that they were coming. We had a great time during their visit, but I think Hannah was definitely ready for a break when it was time for them to leave. Having to be "on" 24/7 is hard for anyone, but it was next to impossible for Hannah. She needs plenty of alone time throughout her day and while they were here she didn't get any at all. Even though I was constantly on her about being a good friend, admonishing her for not playing with Evelyn, and pushing her to be social with our guests I think she did pretty well all things considering. Sometimes I just expect too much from her. I have to remember that she's not like other kids even when she appears to be doing ok. It sure was sweet to see those two playing together though. It's been way too long. Those two know each other like the backs of their own hands still, even though they haven't seen each other since November! I think that's pretty amazing. One funny thing was watching Hannah try to engage Evelyn in play. Hannah absolutely had to be the one directing the play at all times. It was like she was a little mini CEO. I kept hoping Evelyn would put her foot down and say "NO! I want to play this," because Hannah desperately needs a reminder that it's not all about her, but unfortunately for me Evelyn was a total sweetheart and went along with whatever Hannah wanted to do.

Here's a random funny Hannah story for you that happened tonight. I was sitting at the table looking at a magazine that had just come in the mail and was trying to get Hannah to go upstairs to get her PJs, but Hannah was stalling. She saw an advertisement for the Sears Portrait Studio that had fallen out of the magazine and she said, "What's this?" I told her it was just an advertisement. She replied, "For babies?" I absentmindedly said yes, thinking that she meant baby pictures. She then piped up, "Then we don't need this because we don' t want to get a baby right?" I about died! Kyle called down from upstairs, "You've got to put that on the blog." She totally thought when I said it was an advertisement and that is was for babies that I meant it was for people to BUY BABIES! If that wasn't what a lot of people feel adoption is I would think this was even more funny than I already do, but since I wanted to be sure she knew that you can't buy a person I explained to her that it was for baby pictures and that babies enter families either by being born to their mommy or being adopted, not by being bought.

Hannah's behavior lately has taken a turn for the worse. Besides defiance that is like none I have ever seen before, she's getting more and more physically and verbally aggressive. She shouts things like, "I hate you! You're not my mommy anymore! and I'm not going to be your kid!" at me routinely and hits, kicks, and spits pretty much daily. The other day the library curse struck again. Our library has removed it's check-out desk and replaced it with all self check out machines. Don't get me started on how much I hate this set up. That's for another post. Anyway, we were trying to check out the books and Hannah wanted to do it. She had a book up on the scanner, but she was trying to swipe the wrong bar code so it wasn't working. I tried to help her turn the book around so that the correct bar code would scan underneath the laser and she totally flipped out and chucked the book nearly 10 feet across the lobby. It was a miracle it didn't hit anyone. I looked like she was trying out for Olympic Discus! It's pretty much impossible to enforce a timeout outside of our home anymore so I did the only thing I could do and I told Hannah we were leaving the library right now and that we would not be able to check out the rest of our books because of the way she was acting. She went ballistic. First she kicked me. Then she hit me. Then she took off running. Leaving the books behind I took off sprinting after her and caught her. She threw herself to the ground and desperately tried to wrench her hand out of mine and would not walk. Instead she continued to scream, kick, and hit. I had no choice but to pick her up and carry her out of the library. She was thrashing around kicking and hitting and pushing on my neck so hard I could barely breathe. Several times she was flailing around so crazy that I dropped her. Eventually we made it to the van . I'm not even sure how that happened and then I had to try to get her into her booster seat. That was not easy, but eventually I got her buckled in and climbed into the driver's seat. Hannah still screaming and kicking away, I started to back out of my parking space when I heard a click. She had unbuckled her seat belt and was attempting to get out of her seat! I was shocked. This was a totally new behavior. I reprimanded her and buckled her back up, but she would not leave the belt latched. I had to hold it in place which unfortunately put me in arms reach of her hitting. She raged in the car for about 15 minutes (which felt like 15 hours!) before she started screaming, "GO! JUST GO! I WANT TO GO HOME!" I tried to explain to her that I couldn't leave the parking lot until I was certain she was going to stay buckled in her seat but that just made her more angry so we had about 10 more minutes of her raging about wanting to go home. Eventually she just started sobbing and wasn't fighting me as much so I took a chance at getting back in my seat. We made it home in one piece, but I was a nervous wreck the entire drive worried that she would unbuckle while I was driving. I don't know what it is about the library, but we seem to have a knack for causing huge scenes there. Before long they're going to ban us from coming!

Ridiculous

Hannah seems to have a knack for making me look ridiculous. Right now her venue of choice is the public library. The last two times we have gone to library she has made me look like a complete fool. The first time, we were standing in the middle of the stacks and Hannah decided abruptly that she didn't want to wear her skirt or tights or undies anymore and pulled the whole kit and caboodle down. Shocked and appalled, I grabbed them and tried to yank them back up. Hannah pushed me away and started shouting, "NO!" I tried again to grab her and she threw herself to the ground and starting kicking wildly. By this time the whole children's library was staring at us in amazement. This was definitely something they don't see every day-even in the kid's section! I tried to calm her down and reason with/bribe/threaten/coerce her to pull her clothes back up, but still she refusesd. She was hitting me, screaming, and flailing around like a mad woman on the floor. Finally, at my wit's end, I scooped her up and awkwardly half carried/half drug her to the restroom (thanking God the entire time that the children's library has it's own bathroom) and deposited her on the floor in the wheelchair accessible stall and shut and locked the door and let her scream it out. After about 5 minutes she stopped screaming and I tried to talk to her and explain why it wasn't appropriate to take her clothes off in the library or any other public place for that matter. She still wasn't in the mood to listen and came at me wielding her arms like a Ninja assassin! I seriously considered ducking under the stall to safety! When she's in meltdown mode she can be seriously strong and there was a definite possibility I could have been injured or at the very least hurt. Against my first instincts, I stayed and managed to hold her at arms length by pressing my hand against her chest and praised God for that second time that library trip that my arms are longer than hers! After she wore herself out trying to get at me it was like someone flipped a switch inside of her. She visibly relaxed, stopped crying and screaming, and said "I'm done Mommy," Then she let me pull up her clothes and we discussed quite calmly and rationally why we have to wear clothes when we are out in public and that it's only ok to pull your pants down in the bathroom or your bedroom. It's times like these that simply blow my mind. I have no idea why she decided she needed to pull her pants down right that very second (she's never done anything like that before) and I have no idea why she went so crazy when I tried to pull them back up. Even more frustrating is that I have no idea what changed that made her willing to pull them back up and able to talk rationally with me when she was done with her hysterics. Here we have a huge meltdown that I have no idea what the trigger was and no idea what happened to bring her out of it. It's like I learned nothing from the experience and won't have a clue what to do to help manage a future situation like this. UGH!

The second incident happened on Thursday. We had been having a pleasant trip to the library and now it was time to leave so we could go home and eat lunch. Hannah started getting pretty squirrelly while we were checking our books out, but she mostly managed to keep it together. Then we had to walk through the long lobby area to get to the outer doors and head out to the parking lot. Right before the final set of doors there are two fake potted trees, one in each corner. When we were almost to the end of the lobby Hannah pulled her hand out of mine and bolted for the door. Frantic that she would run out into the parking lot and in front of a car I took off after her. As Hannah reached the doors she decided at the last minute to duck behind one of the trees and hide in the corner. Initially I was happy about this because it meant that she wasn't in danger, but my relief quickly turned into anger when I realized the little game she had up her sleeve. You know how on cartoons and movies there's the chase scene where the chasee is on one side of a large object such as a table or bed and the chaser is on the other and the chaser and chasee run back and forth like idiots, neither one making any progress at all at either catching the other or escaping? Then eventually the chaser grows so frustrated that he/she vaults over the large object surprising and capturing the chasee. Well, that was Hannah and I on Thursday. Each time I tried to reach around the tree and grab her (I was too big to fit behind the tree) she would scurry to the opposite side of the corner prompting me to move to the other side and reach around that way. Over and over we traded sides of the tree until we had gathered quite an audience hanging out in the lobby and lounging on the benches that line the hall. I'm sure I looked like a chump or the worst mother in the world who had absolutely no control over her child. I was FURIOUS, but trying not to loose it and scream at her. Unfortunately, unlike in the movies I couldn't just jump over the tree and capture my daughter (although once I considered knocking the tree over!). We were stuck in a vicious cycle and I for one certainly wasn't backing down. I don't even remember how it ended. Everything is one huge blur, but somehow I managed to get her and I tried to slink quietly outside, but all eyes were on us. I imagined that they were all watching to see what I was going to do. My face was hot, both with anger and embarrassment. I wanted to cry. Hannah was happily chattering away, already having forgotten the whole incident. I hustled her out the door (probably a little more roughly than I should have) and got her buckled into the van and launched into another lecture about how dangerous it is to run away from Mommy, how it's important that she obey Mommy because the rules I make are for her safety, how Jesus commands children to obey their parents, how this includes stopping or coming when Mommy calls. Hannah sat quietly and listened. She seemed contrite, but I knew it wasn't really sinking in. I knew it would happen again. I knew that even before we were done talking her brain would already be onto plans for what she wanted to do next, what we were having for lunch. Impulse control for the average 3 year old is pretty limited. Impulse control for a bright, curious 3 year old even worse. Impulse control for a bright, curious 3 year old with Asperger's still worse. Some days it seems like we ride a roller coaster careening along from one impulsive act to another. But then there are others that are focused and controlled and I have hope that we really can kick this problem. Those days just seem few and far between. Tuesday was a calm and controlled day. Today was a roller coaster day. Any advice for helping a preschooler with impulse control would be welcome or, if you don't have advice, at least a story or two to let me know others have been there too might help! :)

Speaking of Tuesday, at OT on Tuesday Hannah started a new program called Therapeutic Listening. She listens to specially designed CDs on special headphones designed to transmit frequencies outside the range of normal hearing and normal headphones. The goal is to see improvement in her sensory modulation, auditory sensitivity, and maybe just maybe improved impulse control. I really don't understand how it all works, but the research on the protocol seems promising and unlike some treatments it can't really hurt so I'm willing to give it a try. The only catch is that it's a pretty strict commitment, 2 30 minute sessions every day for 8 weeks. Tuesday, Thursday, and the weekend I have no problem fitting it in, but on school days it's been more difficult to fit them both in-especially the morning session. Hopefully the longer we do it we'll figure out a better way for how to fit everything we need to fit into our hectic morning routine without compromising our sleep or causing meltdowns from rushing Hannah to move faster in the morning (she HATES that!). Wish us luck that this will help Hannah.

School Girl

Tomorrow is Hannah's first day of preschool. We ended up going with the private preschool because Hannah was determined ineligible for the school system program because she tested at gifted level on her verbal language test. This wasn't news to me. I told them as much. That's part of what makes Hannah's weaknesses so apparent if you really care to pay any attention at all. She's capable of extremely advanced language for her age, but is unable to use even typical language with her peers. It's a huge gap between what she can do and what she's able to display in a social situation with other kids. Hannah is pretty excited to be starting school. She's got her Dora backpack, Tinkerbell lunchbox, and Princess thermos. In her eyes she's all set. I'm a bit nervous about how she'll do. Four hours is a long time. She's never been in a social situation for that long without Kyle or I present.

I must say that if she ends up being comfortable, this should be good for both of us. It's been a rough few weeks around here and both Hannah and I need a break from each other. Hannah has fully embraced her place in the Tyrannical Threes and has been bossing around everyone in sight. She screams at even the slightest hint that she might not get exactly what she wants RIGHT NOW. And she's ramped up her hitting and kicking to never before seen levels. I'm sure her rage is becoming a neighborhood legend. At least once a day she will get to the point that she is hitting or kicking me and I am unable to get her to stop or stay away from me so I have to close her into another room and hold the door shut. I HATE doing this (and CPS would probably be do an investigation if they knew), but all other efforts to get her to deescalate have failed. I'm no longer strong enough to hold her arms and legs down so that she can't hit or kick so my only option to keep myself from becoming black and blue is to remove her from me. Closing her into a room makes her even more angry initially and her rage usually escalates, but eventually she will calm down when she no longer has a person to fight against. The thing that scares me the most about her rages is that she seems oblivious to pain during them. She will pound on the door or walls so hard that she will bloody her knuckles, but she doesn't stop. She keeps going and going and it's only after it's all over that she realizes she's hurt herself. She's only 3, but I have no idea how to help her manage such rage. It's so unlike the temper tantrums I see other kids have. Anyone have any ideas?

On a lighter note, Hannah's reading abilities are now transferring to her spelling skills. Instead of only spelling words she has memorized she is attempting to write words by sounding them out. One of her favorite things to do is make the grocery list with me. Here is a sample from one of her recent lists: MLK-milk, PES-Peas, FROOT-fruit, JLE-jelly The fruit really impressed me. That's how I'd expect a first grader who's been learning some of the more complicated vowel patterns to spell fruit, NOT a newly turned 3 year old! Her handwriting is also improving by leaps and bounds. She can now attempt all the upper case letters with at least some degree of success without any help or anything to look at. She's quite legible on most of them. S, G still give her quite a bit of trouble, but even those are starting to come around and she can get them pretty well with some verbal cues and an occasional hand over hand to get them started. She's also becoming quite well at transcribing. She can copy up to four words in a row accurately without any prompting or supervision. That sure made making birthday thank you cards easier this year! I'm so proud of all of her academic accomplishments. Makes me wonder what she'll be doing by the time she actually makes it to kindergarten and first grade though!

Yesterday we had such a great time out on the beach. Hannah and I walked down to the little beach at the end of our street to swim. Instead of swimming we ended up catching periwinkles (little snails for those of you back in the Midwest), hermit crabs, and even tried our hand at quahogging (digging for a certain type of clam). I never managed to get any Quahog though. I kept finding what the locals call steamers instead. Hannah was so happy splashing around in the water and chasing crabs and catching periwinkles. Seeing her with her little pail dropping in snail after snail filled me with such joy. She was so content. We are so lucky to have these opportunities within easy walking distance of the house.

My Little Terrorist

While I've often complained that the airline industry took security as far as what was and was not allowed onto a plane a bit far in the post 9/11 aftermath, I now believe they were completely justified in banning toenail clippers from carry-on baggage. They can (and have now been used in my house) be used as a terrorist device. Confused? Remember this post? Apparently I should have been more specific in my post "beautification" lecture. Instead of stressing that she should NEVER cut HER hair with SCISSORS, I SHOULD have hammered into her little brain that she should NEVER EVER EVER attempt to cut ANYONE'S hair with ANYTHING. Are things becoming clearer now? Ready for the full story? Lately I've been even more exhausted than usual so Hannah has been allowed to come into our bedroom when she wakes up and watch PBS until I'm coherent enough to tackle the day. This morning I was struggling more than usual with getting myself moving so apparently Hannah tired of TV and decided to make her own fun. I felt her climbing around me, but didn't think too much of it. Then it felt like something pulled my hair. I opened my eyes to find toenail clippers poised less than an inch from my eye being wielded by a newly turned 3 year old! I was so startled I bolted upright and nearly knocked Hannah off the bed. Once I recovered I asked her what she was doing. She calmly replied, "I'm cutting your hair, Mommy." Seriously, do other people's kids do this or am I the only lucky one?

Lately I've been doing battle with the local school system (while simultaneously researching private preschools in case I lose) since they have deemed Hannah too high functioning to qualify for their preschool unless she scores poorly on their language pragmatics test they want to perform next week. The problem I have with this is that only one person on the eligibility team has seen Hannah in the environment that gives her so much trouble. Not only that, but the observation lasted only 30 minutes and was during a highly structured group circle time that required little to no peer interaction of Hannah. When I discussed my concerns that although Hannah is highly capable of using advanced language, she is unable to do so with peers even when she is distressed and wants a child to leave her alone and the only word she need utter is "NO" in order for a teacher to intervene and her therapists reiterated this concern many times over, the eligibility team assured me that if there really was a problem then it would show up on the language pragmatics test they intend to administer. Um, I'm not a speech pathologist, but I DO know my daughter and I'm positive that she'll ace whatever language test they give her if it's administered one on one by an adult. It's not that Hannah doesn't understand HOW to use language. Her problem is the practical aspect of using that language effectively (or at all) with peers or often even with adults when she's in a socially overwhelming social environment. Whether they choose to believe it or not, those who really know Hannah know this is a problem. Though the defender of justice in me wants to make them provide her with what I firmly believe that by law she is entitled to, I'm growing weary of this fight and I'm not altogether convinced that this classroom (taught by the person who observed her for 30 minutes and proclaimed to know all about her) will be the best place for her. I'm not sure that this particular teacher will be able (or possibly willing to after all the fight I've put up) to meet her needs IEP or no IEP. I've found a private preschool near our home (recommended by her speech therapist) that seems like it would be a perfect fit. It's fully inclusional, has OTs, PTs, SLPs, and a nurse on staff, and is taught by the teacher that USED to have the job of the lady who observed Hannah and who would teach her class should she qualify and attend the school system's program.

As Hannah becomes more and more willing to and interested in interacting with other kids I've begun to notice a troubling pattern. Take today for example. Hannah and I walked down to the beach to play in the sand. Shortly after we arrived a father and his two daughters (aged 4 and 5) showed up to swim. They tirelessly engaged with Hannah until they finally broke through her defenses (aided I'm sure by all the sensory input the ocean provided!). All of a sudden Hannah was playing happily with the girls. As she became more comfortable with the girls she swung 180 degrees from refusing to interact to completely being in their faces and just generally being too close and not respecting their personal space. It wasn't long before the girls who had been actively trying to get Hannah to play with them were now trying to get away from her and Hannah was clueless as to the change of events. I felt so bad for her. She really thought they were all having fun. I tried to remind her to give them space, to not shout in their faces, to keep her hands to herself, but she just couldn't understand. They wanted to play with her. They were being nice to her. Why shouldn't she play with them in the only way she knows how? I see this pattern happening over and over again. Nearly every time Hannah manages to break out of her anxiety and make an initial connection with another child, it almost always begins to go south as she becomes more comfortable and attaches herself at the hip to the other child. Right now she doesn't get it that these other kids don't want to play with her anymore, but what I'm worried about is that if we can't teach her how to sustain the initial positive interaction she will eventually begin to notice that kids don't want to play with her and be hurt by it. I just don't want to see that happen to my little girl. What I don't know is how to teach her how to do it and how long I have before she starts to notice when the kids don't want to be around her. So, for all you veteran parents out there, how old are kids usually before they start to notice what other kids think about them?

The Tie-Dye Project

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.

First House Guest

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?!? :)

Moved In

We are finally all moved into our new house. We have been for about a month now, but we've been so busy trying to get things clean and into a livable state as well as traveling back to Indiana for a wedding that I haven't had time to post. The move went about as smoothly as I could have hoped. Hannah really likes her new room and enjoys spending time in there. Since we have no other space for her toys, they are all in her room which means that she doesn't always have a nice orderly space, but that's ok with me (mostly). Hannah probably has the coolest room in the house. The paint color and wainscoting are adorable and we've turned her closet into a little clubhouse since it's so big. One thing that I don't like about the new house is that it's impossible to keep clean. Between frequent walks down to the beach (what a shame huh?) and a driveway that is essentially completely sand, it is next to impossible to keep sand out of the house. There's no entryway, porch, or mudroom to easily remove your shoes before you enter the main living space and because all the floors on the main level are either tile or wood the sand always ends up kicked all over the house and stuck to the bottom of your feet even if the shoes stay right by the door. I would welcome any tips on sand control from those of you that have lived on a coast near sand for longer than I have because if I don't do something to contain this sand soon I just might go crazy. Other than that, the only part that has been hard to get used to is the fact that the house is smaller than what we moved from so we have too much stuff. We downsized quite a bit before we moved, but apparently not enough. We ended up having to even get rid of our mattress foundation and the guest bed mattress and box spring because the stairs are too tight to get them up to the bedrooms! We don't have a king bed either. We were only trying to get a queen up there, but these New England houses have narrow and oddly shaped and placed staircases.

Besides moving, a lot of stuff has been happening here at the Spontak house. Hannah started a social skills group through our early intervention agency and she has been doing fantastic with it. I've seen so much improvement in her socially that it's amazing. She's still pretty overwhelmed by all the activity and kids, but at least she will speak when spoken to by an adult there (she wouldn't really do that at preschool in Indiana unless the words were pried out of her) even if she won't willingly speak to or interact with the other kids. If directed to she will interact a bit with the other children although she tends to prefer the quietest and most low-key kids in the group. That's fine with me. A relationship is a relationship and we all have types of people who we tend to gravitate towards anyway.

Last weekend Hannah was the flower girl in my friend's wedding. It was a rough trip and we witnessed some pretty bad behavior (of the disobedience/brattiness type) as well as some sensory and social overload with the accompanying meltdowns, but there were also some brilliant moments in which we were able to see just how far Hannah has progressed since we moved and she started her therapies here in Rhode Island. The first was that she was totally ok with the little boy who was supposed to be the ring bearer at the wedding and they even walked down the aisle together. They didn't hold hands (Hannah would have none of that), but they walked down near each other and even played with each other during the rehearsal and reception which is a huge deal since Hannah had never met him before the rehearsal. Hannah even initiated physical contact and expressed an interest in continuing to interact (even if it was in a somewhat inappropriate manner!) with him during the reception by chasing after him when he grew tired of dancing with her and grabbing him around the waist to prevent him from leaving! The second half of our trip we spent at our friend's house and Hannah got to see her good friend Evelyn. We watched in amazement as Hannah and Evelyn played and interacted appropriately and independently for up to a half hour at a time. Hannah was even tolerant of some physical affection and over exuberance on the part of Evelyn. This was usually never allowed before we left, but Hannah was quite tolerant for her and I was impressed. Now, it wasn't all roses and butterflies between the two of them. Hannah had some of her most spectacular meltdowns there and was on a hair trigger for the better part of the second day we spent with them, but it used to always be like that before we left if we tried to coax Hannah to interact with Evelyn or if Evelyn was insistent on hugging or touching Hannah. Poor Evelyn was in a constant state of bewilderment about why Hannah didn't appreciate her affections. This visit was a definite step forward. We also got to visit with Hannah's birthmother and siblings while we were in Indiana. Hannah played with Kayla and Chase and even let them both pick her up and rough house with her a little bit which was surprising although they are both near the age that Hannah normally likes to hang out with since they just turned 6. Hannah, in a bizarre twist, was shy with Tiffany instead of the twins this visit and we really had to coax her into letting Tiffany hold her for a picture. She was pretty chatty with her on the phone a few days before the visit though which was pretty fun to hear.

This weekend we began the messy task of attempting to night potty train Hannah. She's been completely day trained for about a year, but night dryness is not something we have experienced often. I decided to just take the leap of faith and give it a try anyway. We talked it up for about a week before hand and then we double made the bed (two complete sets of sheets and waterproof mattress pads layered on top of each other), put her in big girl undies instead of just in case underwear AKA pull ups, and prepared ourselves for the onslaught of extra laundry. The first night she made it a few hours and then had an accident that woke her up. She was extremely upset by it and it took quite awhile to talk her down and get her back to sleep. About 5 minutes or less from Kyle leaving her room she had another small accident! I wasn't ready to give up and put her back in a pull up already on our first night because I was out of waterproof mattress pads so I just changed her clothes and then put a folded up towel over the wet spot since the bed wasn't that wet. This time she made it until 4am until she had her next accident. At that point I had washed the first set of sheets and pad so I was able to remake the bed and try to send her back to sleep, but she was pretty much up for the day. Last night she did much better. She made it through the whole night and didn't have an accident until 6am, but then it was a BIG one. There was TONS of pee. She did have a dry nap yesterday which was encouraging. Overall I don't think she's done too badly for her first few days. We'll see how things continue.

Today Hannah got her first major haircut. She's had her hair trimmed to remove split ends and cut to even it out several times since she was a baby, but this was the first time she really had it cut to alter the length. We took her to a place that only does kids cuts. They had toys in the waiting area and the chairs all had their own TVs to watch DVDs on and everything was sized for kids. She had a great experience and even let them wash her hair in the lay back sink. We didn't attempt the blow dry and it was probably a good idea since she's been growing more and more sensitive to sounds lately (more on that later). They took 6 inches off her hair! It looks really cute, but it was hard to see it go. Her hair was so beautiful, but she has been increasingly resistant to having it brushed and placed into ponytails and if you leave it down it gets even more ratty and is constantly in her mouth so it was something that needed to be done. Still it pained me to do it. She was quite excited about getting it done though and I think she mostly enjoyed the experience. The stylist even put glitter gel in her hair and she got to pick out a prize for being good just like at the dentist.

Now, back to her sound issues. Before moving to our new house Hannah was really only bothered by extremely loud noises such as hand dryers, garbage disposals, and the flushing of public toilets. However, since we've moved she is constantly putting her fingers in her ears and shouting too loud about all sorts of things, some of which I don't think are all that loud. Included on her hit list now are the vacuum, dishwasher, loud mufflered cars, motorcycles, lawn mowers, babies crying, people laughing loudly, radios playing in vehicles passing by, dogs barking, the sound of the wind when the van windows are down, and many, many other things.

One change that's been happening that I am very disappointed about is that Hannah has pretty much given up her nap. Occasionally if she is really tired she might fall asleep in her car seat if it happens to be early afternoon, but basically she's done. The frustrating part is that her body really still NEEDS that nap. By about 4pm she is seriously cranky and behaving poorly if she hasn't slept and this cutting out of nap hasn't corresponded with an increase in hours slept at nighttime. She still goes to bed and wakes up at the same time. UGH! On a positive note, there are many nights when she is so exhausted by bedtime that she falls asleep before we are done singing her her song so there isn't a bedtime battle that night which is nice.

A few weeks ago Hannah had a nasty rash over a good chunk of her body along with a fever so I ended up taking her to the doctor. We didn't get to see the doctor who I hope will be her new pediatrician, but we saw another doctor in that practice. Since her medical records still had not arrived from Indiana for some reason, I had to fill the doctor in on Hannah's medical history. He, like the urgent care doctor in April, was concerned about Hannah's frequent bouts of pneumonia and spoke with me about some possible causes for the chronic problem. He said the most likely culprit is asthma, but that Hannah is too young to be adequately tested for it. I agree with him that that is most likely culprit given her health history on Tiffany's side (her birthmother). The other too common causes of recurrent pneumonia he mentioned were lung abnormalities and cystic fibrosis. He thinks her lungs are probably structurally ok since someone would have surely noticed a problem on one of her many chest x-rays if there was something visibly wrong. So, he's sending her for a test to rule out cystic fibrosis. The test is called a sweat test and we are going to take care of it next week. Apparently it's fairly simple although it does take close to 2 hours to perform and only select hospitals can do it, but it still freaks me out that we even have to test for the possibility of cystic fibrosis. For Pete's sake, cystic fibrosis is fatal! Talk about a sure fire way to scare a mother to death even suggesting that the disease is a possibility in her child! As far as the rash and the fever was concerned, she ended up having some sort of allergic reaction, but we couldn't figure out what she was reacting to. Eventually the rash went away, first with the help of Benedryl which I quickly discontinued the use of after it turned Hannah into a raving lunatic instead of a drowsy child like the pharmacist warned, and then on it's own after several days of nagging Hannah not to scratch. So far it hasn't returned and I am grateful for that because trying to keep an almost 3 year old from scratching is like trying to convince a fish not to swim! It's definitely not an easy task, dare I say an impossible one.