Ehler's Danlos Syndrome

If you are a regular reader here you know that Hannah is EXTREMELY flexible, like you can take her thumb and bend it sideways to lay it flush with her wrist kind of flexible. She also has really flat feet and her feet collapse outward significantly. An orthopedist had been watching this since she was about 18 months old using the wait and see approach. Last October when Hannah starting complaining of pain in her hips we were back to the doctor again and she was given AFOs for her shoes and pronounced at the extreme edge of normal as far as joint laxity. The doctor called it hypermobility syndrome. Well it was time for her yearly follow-up last week and I believed that Hannah had outgrown her AFOs because she was complaining that they hurt her feet which she hasn't done since getting used to wearing them last year. Besides checking out the AFOs the doctor completely reevaluated her because of some concerning trends he had noticed in her gait. Because she's heavier now her ligaments are under even greater strain and her feet, ankles, and knees are showing the stress and are starting to show the effects of over compensation. It was hoped that her ligaments would tighten some with age and that the AFOs would be a temporary thing. Unfortunately, things did not improve. In fact, they got worse. After the evaluation the doctor informed me that Hannah had a mild form of a genetic disorder called Ehler's Danlos Syndrome. I don't know much about the disorder yet, but from what I understand it is mainly a defect in the production of collagen. Because the collagen is defective ligaments, blood vessels, skin, and anything else made of collagen are suspect to problems. So far, it appears that Hannah really only has issues with her ligaments and skin, but the doctor wants her to probably go see a cardiologist in about 6 months to get a baseline idea of her heart health in case any issues crop up as she gets older. There is no cure for Ehler's Danlos unfortunately, but the symptoms can be treated individually. So, Hannah had her AFO's adjusted, thank heavens she hadn't outgrown them since they cost $600 a pair and are NOT covered by insurance. She is also going to have to wear something called a Dennis Brown bar at night for 6 moths to a year (then she'll be reevaluated to see if it's helping or if she'll need surgery). I am SO NOT looking forward to this bar. It is basically a pair of shoes attached to a metal bar that holds the legs in a fixed position. They used to be used for infants a lot in past generations to correct bowlegs, in toeing, etc, but now they are basically a thing of the past and I can find absolutely NO information on them being used in a child as old as Hannah. Everything I have read about them show them being used on immobile kids. In fact, the idea of kid Hannah's age using them is so far fetched that when I went to order the special shoes that have to be bolted to the bar, the medical equipment guy had to look through several manufacturer catalogs before he found a place that even made Hannah's size (size 12 in case you were wondering!). Hannah hates wearing shoes and we have a hard enough time keeping her in her shoes during the day so I'm dreading trying to get her to wear what look like very uncomfortable shoes at bedtime. To make matters worse, she's a belly and side sleeper and with this bar she will have to sleep on her back. She also wakes at least once a night to go to the bathroom and I'm not sure how she's going to let us know she's awake if she can't get up out of bed and walk to the door to knock on it like she does now. We are definitely going to have a big learning curve here soon once the shoes come in. Wish us luck.

Irrational Laughter

This past weekend was rough at the Spontak house. Kyle has some sort of viral throat infection, thankfully not strep and I caught a particularly nasty stomach virus that KICKED MY BUTT. Consequently sensory diets were not high on our list of things to do and poor Hannah received very little quality time Saturday (Sunday Kyle was doing a bit better and was a fantastic Daddy even though he still didn't feel tip top), dare I say little attention period! As a result of the lack of heavy work and attention, behaviors skyrocketed on Hannah's end and we had little patience for dealing with them appropriately or heading them off at the pass. It was a vicious cycle. On Sunday I watched as Hannah disobeyed and then smarted off to Kyle as he attempted to discipline her (I don't even remember what she did or said) as I sat completely devoid of energy, dizzy, and just trying to keep what little was in my stomach in there. For some reason the absurdity of the situation struck me and I began to laugh. Laughing made me more nauseous and also hurt my overtaxed abs from all the vomiting. The pain became so intense that I was crying all the while still laughing. It was such a WEIRD sensation. I wasn't laughing so hard I was crying in the normal sense, but yet I was laughing and crying at the same time and unable to stop either. Kyle and Hannah just stared at me confused. Luckily I didn't get screamed at or hit (Hannah doesn't really care for other people's laughter because she usually thinks it's directed at her although this time in a way it was so she might have been justified at being upset!) and I managed to somehow not throw up all over the dining room. The odd thing was that after that bout of irrational laughter my mood was much better even though I still felt awful. Nothing pleasant or good had happened, just more of the same, but the simple act of laughing uncontrollably cheered me up. I guess that maybe laughter really is the best medicine.

The new bedtime routine is going pretty well. Last week Hannah slept completely through the night for the first time since at least May. It may well have been even longer than May, but we know for sure that we hadn't had a full uninterrupted night of sleep since moving into the house. It was amazing how refreshed I felt that first morning. Hannah was better behaved too. I'm sure lack of sleep has been making us all cranky and impatient. Hopefully the success continues. Oh, and she's also managed to stay dry on her own ever since we stopped waking her up to pee as well. Yahoo to full night's sleep and no more pee soaked sheets!

Just within the last week Hannah has realized that she can read. I mean she's known she can read for a long time, but now she'll actually pick up a book independently and read the words she sees rather than making up her own story or just looking at the pictures. Before she would only actually read a book if asked to read it. If left to her own devices she'd much rather make up her own version of the story. Last week though, something switched. She's been asking to read to us instead of asking us to read to her. She's been reading aloud in the van to pass the time. She's independently and almost without conscious thought using the skills she has to make her life easier and more informed. For example, she'll see a piece of paper on the counter, look at it and read what it says and then ask questions about what it says. She'll read the titles flashed on the screen before her Curious George TV shows start so she knows what to expect. She's checking the school calendar to know what the day holds before I tell her. Reading has switched from being something she could do easily, but chose not to do, to something she does without thinking like adults do. It's now something that just happens. She sees a word and it's read. It's like she can't not read it now. Not only is it read, but it's processed, understood, and used to her advantage. I have a feeling a whole new world has just opened up to my little girl. It's going to be exciting, but heaven help us as we cope with all the new information that brain of hers is going to be packing!

Hannah seems to have handled Kyle going back to work quite well. I guess I underestimated her. We had a few rocky days, but on the whole she's done fine. We're still trying to getting back into the grove of our old routine, but that will come I think. I hope it will anyway!

The last few days Hannah has been eating like crazy. She's been consuming more food in any given day than I normally would! I know she's grown lately because Kyle pointed out to me that her houseslippers are definitely too small for her (yet there's no way I'm going to be able to get rid of them until I have a replacement pair!) and I felt her shoes today and I'm pretty sure it's time for a new pair of them too. That's one of the drawbacks of her being able to do her shoes completely independently is that I don't have a daily check on how her shoes are fitting. She certainly hasn't mentioned that they are too tight, but they definitely are! I've also had to retire several shirts and pants this past month. Come spring time I'm going to have to buy her a whole new short sleeved shirt wardrobe because I don't think she has more than one or two that could be worn alone and be considered decent. The clothes in her closet right now are shirts sized 5-6 and pants 4T (a little short, but at least they'll stay up!) and dresses 5-6. Her current shoes are 11s and her slippers were 11/12s. She's only 3 1/2 for pete's sake! This girl totally is going to out grown me before she's half way through elementary school.

And It Begins Again

It seems that our almost one year reprieve from near constant ear infections and fluid in the ears is over with. This morning Hannah complained that her ear hurt and when preschool called to tell us to come pick her up because they thought she had pink eye Kyle took her to the doctor and it was confirmed. She does indeed have an ear infection as well as pink eye. The worst part about it is that her ear tubes have slipped out of position in both ears (we found out they might be starting to shift in October). It appears that she got an infection pretty much immediately after the tube had moved out of place. This does not bode well. The way I see it (I realize I'm jumping to conclusions, but I have lots of experience with Hannah's ears to go on) we have two options. First we could just let the tubes fall out and go through the cycle of constant ear infections again and risk Hannah having hearing loss from the fluid building up on her ear drum again like last time. OR we can put Hannah through another surgery to replace the tubes and hopefully get another reprieve from the constant infections, but risk having a recurrence of the post op pneumonia she had last time after being under general anesthesia. I don't like either option. I suppose a third option is that we do nothing and the infections just never come back, that this infection was just a coincidence, but somehow I don't think that is a viable option or a likely outcome. Oh, and to top off poor Hannah's ear infection and pink eye she also started complaining of a tummy ache around lunch time and then finally threw up right around dinner time. I was actually pretty worried about this day. The last time Hannah threw up (not counting the times she's made herself throw up when she was angry) she was only a year old and not really old enough to remember how it feels. I was worried about how she would react when the day finally came that she got sick to her stomach. I expected her to be hysterical. After all, it's a scary feeling to not be able to control your body. I shouldn't have worried though because she took it like a champ and was actually fascinated by the products of her efforts. I suppose it helped that her vomit was bright purple thanks to some blueberries! After throwing up we gave her a bowl to take around with her in case she felt sick again and wasn't able to make it to the toilet. When it was time for bed (she actually ASKED to go to bed around 6pm tonight by the way! That about gave me a heart attack!) she said that she thought she needed to take the bowl with her. Just a few minutes ago when she got up to go to the bathroom she told me that now she was just like me because she had her own bowl by her bed (I have gastropariesis and frequently throw up a night) and she sounded so proud! Great! That's not exactly what I had imagined her wanting to emulate about me! The funny part is that she was concerned that Kyle doesn't have his own bowl. She even offered to share her bowl with him if he needed it. How generous of my little girl :) Then the final nail in the coffin today was that both Kyle and I are pretty sure that we both have pink eye too!

3 1/2 Years Old

Yesterday Hannah officially turned 3 1/2 years old. At the rate she's going she just might drive me insane before she turns 4! She absolutely cannot accept what you say without a fight. If you tell her the sky is blue, she will say, "No it's not. It's green." If you say, "It's time to eat dinner," she will say, "No it isn't." On and on and on it goes ALL. DAY. LONG. every single day. It's to the point that I don't even know how to handle it. No amount of discipline or ignoring it seems to make any difference what-so-ever. Every time she utters "No" my blood pressure raises just a little bit more so that by the time it's bedtime I'm a quivering mess. Is this amount of defiance typical in a 3 year old or are we just horrible parents? Someone please throw me a bone before I lose it on my intensely opinionated 3 1/2 year old.

Night-time potty training is going quite well for Hannah. I honestly can't remember the last time she had an accident at night. We were waking her up right before we headed to bed to take her to the bathroom one last time and that was working quite well until she started waking up and not going back to sleep. So, we stopped waking her up to see if she would start having accidents again and so far so good. She's been waking up on her own at least once a night to go to the bathroom and thus far she hasn't had an accident. The only problem is that it hasn't really helped with the night waking/not wanting to go back to sleep. She's averaging 3-4 times getting up a night. I would say that only 1 or 2 of those times does she actually need to pee and the tantrums she throws when we try to insist that she go back to sleep are spectacular. It seems like every time we solve one sleep issue, another one rears it's ugly head again. At least for now at least she's falling asleep initially each night quite quickly. Getting ready for bed though, that's a different matter entirely. We are currently in the process of trying out a new bedtime routine to try to cut down on some of the trauma associated with the simple task of getting ready for bed. Wish us luck that we'll have some success.

Next week is the week that Kyle will probably go back to work as long as he gets to go ahead from his surgeon. I'm nervous about how Hannah's going to take it. We've been doing our best to prepare her, but she's gotten awfully used to Daddy being home all the time. She likes Daddy taking her to school and picking her up. She likes having breakfast with him in the morning and just generally getting to spend so much time with him. I'm going to miss him too, but I'm going to also have the added stress of dealing with the behavioral outbursts that I'm sure are going to happen. At least school will be back on a somewhat regular schedule so she'll have 3 days a week that she'll be distracted.

Autism Awareness Month

Today is Global Autism Awareness Day and April is National Autism Awareness Month. Several of the blogs I read have already begun to post entries that highlight some of the most crucial points that the general public needs to learn in order to make life for those with autism better. As the month progresses I intend to link to several of my favorite autism blogs as well as highlight some of the things we have learned from our brief (officially) stay on the spectrum. The most important thing we have learned is that autism is a spectrum. No two individuals on the spectrum present the same way and range from mildly affected and high functioning (Asperger's Syndrome) to severely disabled and unable to perform basic self care or even communicate verbally (severe forms of classic autism). Autism is commonly referred to as ASD (autism spectrum disorder) in the medical community and is a pervasive developmental disorder. It is neurological and is not something that a person can grow out of or be cured of. With treatment, significant improvements can be made, but the individual will always struggle with the challenges of their disorder. That's all I'll say today on autism, but stay tuned for further facts and personal anecdotes from our experience living with Hannah's Asperger's. Here's my first blogger writing about autism. His name is Cale and he's a college student living with autism himself. His blog is awesome and has tons of great information about autism. So, without further ado, I present to you Spectrum Siblings.

The past several weeks have been really rough for Hannah in the sleep department. Instead of getting better the longer we stay in the apartment, Hannah is having more and more trouble getting to and staying asleep. For most of her life Hannah has disliked going to sleep and has always seemed to sleep much less than other kids her age. Starting at around 6 months of age her sleep issues started. She began resisting sleep more and more. Once she moved from her crib to a big girl bed things got even trickier. To her normal screaming and crying she added banging on her door with her hands and head. She has wonderful stamina when it comes to resisting sleep and could go on for hours (her record is 3 hours 15 minutes after which I put a end to the torture-both hers and mine!). Once arriving in the apartment Hannah added a new trick to her repertoire-deliberately wetting her pull up to get us to come in and get her a dry one and take her to the bathroom. You might say, "how can you know it's on purpose?" The reason I know is that every time she had been taken to the bathroom only minutes before, she has not had a waking accident in ages, and the accident always happened within two minutes of us walking out the door of her room without fail. It was most definitely deliberate. Once that trick ceased to get the desired response she upped the ante. Next came deliberately having a poop accident. She hasn't had a poop accident expect for diarrhea attacks due to antibiotics since she became potty trained nearly a year ago! This was most definitely deliberate as it happened right after us leaving the room as well. Finally, her most recent tactic is making herself throw up on the carpet right in front of her door! She's done this twice now. I'm pretty much at my wits end. Things absolutely cannot continue like this, but I don't know what else to try. Reasoning with her, cracking down hard, just ignoring her, we've tried them all over the past 4 weeks and none seem to help. I'm sure this is somehow rooted in the move, but I'm not sure what to do about it or what the real issue is. Has anyone had something similar to this happen after a big transition such as moving or a new sibling? I'd welcome any advice you could give me. Please, just no suggestions such as a consistent bedtime routine or soft music. We are sleep issue veterans and have tried just about everything over the past 2+ years and this is not your average sleep problem. This is new even for Hannah.

Since we've been in Rhode Island our entertainment has been a bit different than what we are used to and it's been limited to what I've managed to find in my limited exploration. We've spent the most time at the Children's Museum which Hannah calls the adventure museum. She LOVES her adventure museum and asks to go to it practically every day. We've already recovered our membership dues twice over and we've only been in the state for just under a month! Though she's being exposed to lots of kids there, I still haven't been able to persuade her to interact with any of them really. We'll keep working on it though since she really does have a ton of fun going there. Another thing we have been doing quite regularly is going swimming in the pool here at the apartment. Hannah loves watching Kyle do dives into and out of the water and really wanted to be able to do a "dolphin whale" AKA a dolphin dive herself. Since she has tubes in her ears she's not able to go under the water without ear plugs. I ordered her some plugs and a band to go over them to keep her from picking at them and we waited eagerly for them to arrive. Hannah desperately wanted to be able to go under so we checked at the front desk every single day until the coveted package arrived. Hannah was so excited to put her ear plugs in and go swimming that first day. We took her down and she immediately wanted to go under. Once she did she was not keen on doing it again. Though we prepped her extensively about not breathing in while under water and taught her how to take a deep breath before going under, she came up sputtering and flailing from her brief under and up dunk. I figured it would not be a happy experience given how upset she gets when water gets into her eyes in the bath, but we gave it a try because she REALLY wanted to be like daddy. Another fun activity that Hannah has been enjoying is helping us prepare meals. She loves it so much that losing the privilege of helping, even if it's just pressing the buttons on the microwave to heat up leftovers, is the ultimate punishment. Unfortunately it's not enough to create a positive change in behavior, but it certainly makes her fighting mad!

Hannah is anxiously awaiting the arrival of the Easter Bunny. She's sent a constant barrage of questions towards me about the particulars of what the Easter Bunny does and how he does it. Since the bunny visited her last year and hid eggs around the house (and yes she does remember hunting for them even though she was only 18 months old!) she is convinced that the Easter Bunny lives in Indiana and will have to fly on a airplane to get to Rhode Island to hide her eggs this year! It made me laugh the first time she told me that, but my laughter has not deterred her from her insistence that the Easter Bunny will be arriving on an airplane. She's also informed me that the Easter Bunny is like Santa since he comes in secret at night. Since he is like Santa we will have to leave him carrots to eat like we left cookies and milk for Santa and carrots for Santa's reindeer. That little girl never ceases to amaze me.

Houdini

It seems we have a little Houdini on our hands. Hannah has finally managed to thwart the child locks on the door knobs. In our old house we had a dutch door on Hannah's room. Kyle turned the bottom door knob around so that the lock was on the outside. This way we were able to keep Hannah in her room during naps and safe at night when she might otherwise be up roaming the house and getting hurt unsupervised. At the apartment none of the bedrooms have locks and even if they did, we did not have the luxury of turning the knob around since it's not our door. So, we put a door knob cover on the inside of Hannah's bedroom door to keep her in her room. She hadn't figured out how to use one yet so we figured this would do the trick of keeping her safe. I was especially concerned about her getting out of her room and then opening the apartment door and going who knows where without us knowing in the middle of the night. This worked for about a week. Then Hannah decided to start playing with the cover and accidentally got one of them off. We found her in our bedroom one morning as a friendly wake up call. We replaced the cover and considered it a fluke. Well, it wasn't a fluke. She became increasingly skilled at removing the door knob cover from the door and getting out. It got to the point that we could not keep her in her room at all. Bedtimes became an even bigger battle than they normally are. We were at our wits end. Then I decided to go down to the Lobby and ask the concierge for some help. I explained the situation and our fears and asked if it would be ok for Kyle to remove the bathroom door knob and switch it with the bedroom door knob in Hannah's room and turn it around the wrong way. I promised we would return them to their correct places once we moved out and would pay for any damage that occurred because of the switching. He said we didn't have to do it. They would have maintenance fix us right up that afternoon! They really do treat their residents nice at this place! Maintenance was at our apartment in less than an hour to do the job. When I opened the apartment door the maintenance man said, "I'm here to lock a kid in their bedroom." I about died I was so embarrassed. What if people really do think we are horrible child abusing parents who lock our child in her room for days at a time?!? Then he cracked a smile and started laughing. I let out a huge sigh of relief. Then Hannah came out from behind my leg and the guy looked mortified. He said, "I didn't know she was there. She's probably going to be scared out of her mind now." I said, "Nah, she's used to being locked in at night!" It ended up not being possible to switch the door knobs because they weren't the same type of knob so he ended up putting a chain lock on the outside of Hannah's door. Now it really does look like we are abusers! It does the trick though. Hannah can only open her door about an inch now. There have been no further escapes and I have been able to rest much easier now knowing that she's not up devising a way to beat the night lock and get out of the apartment.

Though Hannah seems to be sleeping more peacefully when she is actually asleep. There's no more snoring which is awesome. She is still having a really hard time falling asleep and staying asleep. I'm sure some of this is due to the transition to the new apartment, but I'm not sure if that is the whole reason or not. She's been taking Melatonin for awhile now and I was hoping that would do the trick. I think I'd like to increase her dose to see what that does, but I don't want to do that until I'm sure she's settled into a routine here. The problem is that as soon as we get settled here we'll be moving again to our house and the transition will start all over again. So, I'm hesitant to make any changes to the Melatonin until we are settled into the house. An interesting side note about the Melatonin, when I went to purchase it after the developmental pediatrician recommended it I discovered that it only came in pill form. The bottle stated that it needed to be swallowed and not chewed. Up until that point Hannah had only ever taken liquid medicine. I had no idea how we were going to get a pill down her. The first several times it was a big fiasco. It reminded me of trying to give a cat a pill-prying open their mouth, holding down their tongue, dropping it straight down the throat, and then clamping their mouth shut so that they can't spit it out! There was much gagging, tongue thrusting, and digging out of soggy half dissolved pills. However, it didn't take long for Hannah to get the hang of it. Within two weeks she was a pro. After a month she was even able to take the pill independently although she still prefers for me to drop it in her mouth for her to swallow. This just blows my mind. Are 2 1/2 year olds supposed to be able to take pills? Isn't that why they make chewable children's Tylenol? Hannah's always been a good medicine taker. I'm sure some of this has to do with the fact that medicine is just a routine part of our house. She sees me take many different pills each day so I guess for her taking a pill is just what people do. She's always wanted to do anything that is considered a "big girl" thing-hence her early transition to a twin bed, ditching the high chair early, and beginning potty training on her own at 18 months so maybe that's why she worked so hard to learn how to take pills. She just wanted to be like Mommy. I sure hope I'm not raising a little addict by her already having the ability to pop a pill like it's no big deal.

Hannah has finally learned how to have some independence in the new bathrooms here. She devised a way to reach the toilet paper and has perfected her balance on the large hole in the seat while tearing it off. She still can't wash her hands independently because the counter tops are just so darn high, but being able to wipe by herself is a plus anyway. Yesterday she was taking a long time in the bathroom and I went to see why she hadn't called for me to come help her wash her hands. When I got to the bathroom the door was shut. This was unusual in itself, but when I went to open the door I discovered that she had locked herself in the bathroom! I went into full blown panic mode in about 5 seconds flat. My mind was racing wondering what she might get into and how she could hurt herself and what if she wouldn't unlock the door and let me in. Might I have to leave her alone in the apartment and go down to the lobby and ask the maintenance people for help (I don't know the lobby phone number, but I'm planning on finding out today!)? Would they have to remove the door from it's hinges? Then finally I got ahold of myself and I just calmly asked Hannah to unlock the door so I could come in like it was no big deal and amazingly she did as I asked. I've never been happier in my life that she obeyed! We had a big conversation after that about how she should never lock the bathroom door because it's unsafe and while she's at it why don't' we just leave the bathroom door open or at least cracked from now on. She agreed so let's hope we don't have any further incidences of her locking me out of the bathroom.

Sleep Study

Hannah's sleep study was an absolute nightmare (no pun intended)! I will never in my life put myself through such trauma if I can help it. That being said, we did glean some useful information from it that I'll get to in just a second. First though, here's a rundown of our night just in case you were dying to know.

We arrived at the hospital a little before 8pm (already an hour past Hannah's bedtime, but that's when they start the studies). We were the only crazy people who braved the impending snowstorm to make it to their sleep study so we were alone in the sleep lab. The tech was a bit overly cheerful for my taste and definitely was not much for inducing a calm state for sleep. Her voice was loud and just a tad too fake cheerful and she constantly waved her hands around all over the place and bounced Hannah around. Hannah did AMAZING with the procedure for getting all the electrodes on her. She sat quietly and still while the tech glued, taped, and then bandaged dozens of electrodes all over her body. She'd actually been looking forward to going to the "sleep doctor" since I'd been talking it up so much in an attempt to head off any disasters so she was ready for the adventure UNTIL they put the oxygen tubes and carbon dioxide readers into her nostrils. The moment she felt those prongs being inserted into her nose big fat crocodile tears started rolling down her cheeks and she started saying "No, No, No!" in a very pitiful voice and trying to rip them out. We had to hold her arms down while the tech taped them to her face. It broke my heart :(

By 9pm everything was on her and it was time to go to sleep. At this point we are 2 hours past her bedtime and she's running on adrenaline. She continues to keep trying to pull out the oxygen and the tech seems pretty irritated about this. We go through her bedtime routine as best we can and then as soon as it's time for lights out Hannah says she has to go potty. If the tech wasn't irritated before, she certainly was then because she had to unhook all of the wires attached to the electrodes from the machine and the tubes for the oxygen and carbon dioxide so that we could walk to the bathroom. Then she had to hook them all back up after Hannah was done. Finally I get Hannah settled into the bed and I go lay down on the fold out chair in the room. For the briefest of seconds I think that she is actually going to fall asleep, but alas that was not the case. Hannah jabbers on and on to me until at least 10pm because I am in the room. If I fail to respond in some way, shape, or form she gets hysterical thinking I"m not in the room anymore and tries to jump out of the bed which is impossible with all of those wires. SO, I have to respond in order to keep her in the bed and attached to all of those electrodes. Eventually she fell asleep for almost an hour. I watched her blood oxygen level and heart rate monitor for awhile until I saw her pulse start to drop.

Convinced she was asleep, I allowed myself to begin falling asleep only to be awakened by hysterical screams of, "Mommy! Mommy! Mommy!" She was sitting bolt upright and attempting to rip the oxygen tubes out and the bandages off of her head. I flew off of the chair, tripped in the covers, and nearly did a face plant onto the tile floor as I stumbled over to her bed in the dark (I have terrible night vision!). I called for the tech (if she'd been paying attention like she was supposed to I would have thought she would have already been on her way since Hannah was the only kid in the lab she had to monitor) to come help me, but Hannah managed to get the oxygen and CO2 tubes out and some of the bandages off. The tech came in and reinserted everything and bandaged her back up. She was quite loud and didn't try at all to have a soothing voice or manner so that Hannah might not have woken fully up. She left and we started all over again. Hannah fell asleep about a half hour later and just as I allowed myself to drift off myself the screams started again. Because Hannah had to stay in the bed and keep all her wires and tubes firmly attached, I couldn't let her cry it out. I had to respond each and every time she started to get hysterical. This happened once every hour for the entire night. Hannah cycled through a 1/2 hour of sleep and then a 1/2 hour of calming down over and over again until at around 5am the tech came in and said that we should just call it quits. I spent pretty much the entire night kneeling on the tile with my arm shoved through the bed rails to keep Hannah from ripping off the electrodes or to calm her back to sleep when she settled down. I got quite adept at reinserting the tubes into her nose and extremely skilled at protecting the bandages and electrodes from her flailing arms. At one point the tech had to come in and unhook everything because she flailed around so much that she wrapped all the wires around herself and I could not unwind her and she was panicking because she could not move!

At 5am the tech came in and took off all of the electrodes and wires and monitors and sent us home. She said that Hannah had never stopped breathing and that she talked in her sleep with her eyes open and snored really loudly. I'm pretty sure she was not qualified to tell us any of that, but it is what it is. We were told it would be a week to 10 days before we had the results of the study. We had a horrible drive back home in a crazy snow storm with 3 cranky people in the car, but we all survived somehow.

Yesterday the developmental pediatrician called and gave me the results of the study. It turns out that Hannah did indeed stop breathing throughout the night several times. The study recorded what is considered mild obstructive sleep apnea as well as abnormally low levels of REM sleep. The doctor said that this may be a sign of Hannah's body defending against more severe episodes of apnea by preventing her from getting into the deeper stages of sleep where apnea usually occurs. She also concurred that Hannah does indeed talk in her sleep with her eyes open. This is totally freaky to me. Now I'll never know when she's actually awake. All the times she did it in the lab I apparently thought she was awake. The doctor referred us to a pediatric ENT (ear nose and throat doc) who will most likely remove Hannah's tonsils and adenoids as well as put tubes in her ears (more on that in a just a second). This will be done at Riley instead of locally because Hannah is so young and so that she will have a pediatric specialist for her anesthesiologist because of the apnea. Along with the fact that Hannah's adenoids and tonsils are most likely causing her apnea, they are also preventing the fluid from draining through the Eustachian tubes in her ears. She got an ear infection in early November and they have never drained since. At Hannah's hearing test (earlier the same day as her sleep study) she failed in her left ear and they of course detected fluid in both ears. They also recommended she see an ENT to drain her ears so it can be determined if the hearing difficulties are a result of the fluid or a sign of the late onset hearing loss that can sometimes occur in kids who had neonatal herpes.

Though the thought of surgery for Hannah is very scary to me, it's comforting at least to have some idea of what the problem is and to know that it's fixable. To think that she could soon be getting a good night's rest for the first time in her short life is a happy thought. It's also nice to have some validation that there was indeed something wrong instead of having to listen to countless people assuring me that I was just an over reactive first time mom and being told that no one's kid sleeps as well as they would like and that Hannah's "troubles" are completely typical.

PS. Thanks to all who sent well wishes our way before the study and who shared your stories about sleep. I really appreciated them!

PPS. Doesn't she look all cute in her bandages and wires? Even lounging in a hospital bed she's adorable! Although the head bandage to keep the electrodes in her hair does make her resemble a burn victim just a bit!

Sleep Wonderful Sleep

Those are the words I'm longing to say. As many of you know, we've pretty much always struggled with Hannah's sleep and how to teach her to go to sleep and stay asleep. We had high hopes for her weighted blanket and while it does seem to have helped some, it has not been the miracle we had been hoping for. Besides having a sleep study done, the developmental pediatrician recommended that we try melatonin an hour before bedtime. I've been reluctant to go out and buy it (it's an over the counter supplement that your body makes naturally anyway) because I just hate the thought of having to give Hannah anything even remotely close to medicine if I can help it, but this week pretty much sealed the deal. I'm willing to try it and I went out and bought some today. Not only has Hannah been having trouble falling asleep, but she's not been sleeping through the night again either. She's been waking up between 2-4 times a night crying. She's obviously tired and cranky throughout the day because she's not getting a restful night's sleep and this makes her much less able to cope with her other challenges. Last night for example she was up a total of 3 times. She also got to bed late because of church. Thankfully she pretty much went right to sleep. Then today she had preschool and then her friend Addie came over. There were some really great moments to their play date, but also some really rough ones. Twice Hannah hit Addie when there was unwanted physical contact and several other times she went into hysterics when Addie disrupted her lining up of Little People, tried to interrupt her petting of the cat, or did not want to play with her pattern blocks in the "right" way. Normally there are a few incidents each play date, but nothing quite this rough. The hitting of other kids is definitely a newer development that I am not pleased about. On a positive note, we have both the sleep study and her psychologist appointment scheduled. The sleep study is next Tuesday and the psychologist is March 5th. I'm glad the sleep study is so soon because we so need some help. I'm not looking forward to the actual study though. I don't think it's going to be a fun night. I've had a sleep study so I know what all it entails and frankly I'm a bit skeptic about how they intend to keep all the electrodes on Hannah and keep her in the bed. I know this is a pediatric sleep clinic and it's what they do, but still. I'll believe it when I see it! It should be interesting to say the least.

For some reason Hannah has picked up the word "bummer" from somewhere (I'm not sure where) and has been using it quite frequently and in the proper context. I'm sure I've said it before since I grew up during the word's heyday, but I don't use it regularly so I'm not thinking she'd have heard it enough from me to truly understand what it means. Obviously she's heard it somewhere and often enough that she's inferred it's meaning quite adequately. Two of my favorite incidences of her using the word both happened this week. They may not sound as funny written out as they did in person, but I've got to put them on here anyway so bear with me. The first time she was pretending to leave a message on one of her phones for her friend Addie's mom. The message I heard her leave was this, "Hi Kim! How's Addie? Is she still coughing? Poor thing. That's a bummer. Bye." The second time was just yesterday. Our kitchen floor was a little wet from melting snow and therefore slippery. Our old dog, Abby, came trotting around the corner and slipped. Her back end went right out from under her and she fell to the ground. Hannah saw it happen and turned to me and said in a concerned tone of voice that was almost fake, "Aww, Abby fell. What a bummer." I had to bite my lip to keep from cracking up laughing at that one. You probably had to be there to know how funny it was. I think it was the tone of voice that did it for me.

Doctor's Visit

God truly is in control. I know this, but it doesn't stop me from worrying, from trying to help things along, from wondering how on earth I'm going to help my baby. Really I need to just let go and let God do His work. He knows my little girl better than I do and He knows what she needs. I worried the whole way down to the developmental clinic how I was going to make this new doctor see what we see at home, how on earth I could possibly explain exactly how crazy Hannah's meltdowns can be without sounding over dramatic and like a crazy mother while my child sat perfectly content to read a book or write with her crayons. I wondered if this new doctor would think, like so many other (well meaning I'm sure) people have told us, that we were just over reacting because we were first time parents. I wondered if I would drive away angry, frustrated, confused, and feeling like I really was crazy.

I should not have worried. In the 2 1/2 hours we met with the developmental pediatrician Hannah displayed the entire range of her behaviors from the scary to the brilliant (the good, the bad, and the ugly as I like to think of it). I need not have even brought my laptop in. When the doctor came into the room Hannah was busy lining up her crayons, balancing them on end in a perfectly straight line and did not even look up to see who had come in the door (this after having literally asked me 50 + in the 15 minutes we had been waiting in the room if the new doctor was coming now!). She kept at her lining up and realigning for a few more minutes and then decided to grace us with her presence. Hannah conversed with the doctor like a mini adult discussing gymnastics, her new Little People house she got for Christmas, and her horses, but was unable to articulate (or maybe even imagine) what she might possibly do with the Little People in the house (besides line them up and set them up in different situations, but then she didn't even tell her that). Next she quickly and correctly identified the colors of all of the crayons she had lined up, as well as the rest of the crayons in her bag (why stop at just a few?). This entire time she had been sitting on a rolling chair that also swiveled and had been twisting the chair (and herself of course) from side to side in a constant motion except for while she paused to place a crayon carefully on it's end in line. Shortly after identifying her colors Hannah twisted a little two hard in her chair and bumped the table the crayons were lined up on causing them all to fall over and some of them to roll to the floor. At this point she totally flipped out and had a major meltdown. She threw herself to the ground screaming and began trying to bang her head on the tiled floor. I won't bore you with the gory details, but suffice it to say that the doctor was able to witness a brilliant example of a typical meltdown and the head banging behavior we had been concerned about (neither of which I had ANY video of!). Hannah eventually recovered with some deep pressure bear hugs and rocking and went on to read a book to the doctor, write her name, rhyme some words, and cooperate fully in her physical examination. Then, when it was time for the doctor and I to discuss the concerns Kyle and I have, Hannah became bored and cranky and had several typical toddler tantrums when she didn't get her way or receive the attention she wanted which was a nice contrast to the unprovoked meltdown of earlier in the appointment. She also displayed some sensory seeking hitting, avoidance of confrontation (she actually tried to run out of the room instead of look me in the eye after I had said No! to her), and chewing and biting on inappropriate objects. Though it was a LONG session and not what I would normally consider a good day by any standards, I was so grateful that the doctor was able to see so clearly what I was going to try to explain.

Eventually the doctor explained her observations and gave her recommendations. She said that first off Hannah needs to meet with a psychologist for a diagnostic assessment. She explained that in cases like Hannah she makes a joint diagnosis with the psychologist after the evaluation. She said that in her opinion she strongly feels that Hannah will be diagnosed with Asperger's Syndrome and that we will find that she also has a VERY high IQ. The final and official diagnosis will not come until after the psych eval, but for now at least we know we aren't crazy. She also conferred that Hannah has definite sensory issues and that her sleep difficulties are not normal. Apparently her tonsils and adenoids are enlarged and could be causing some sleep apnea which could be exacerbating some of the problems Hannah already deals with. She recommended a sleep study and then a visit with an ENT specialist to determine what to do in that department. She also said that if we can't get Hannah in to see the OT that we want to do her sensory evaluation for formal diagnosis in a reasonable amount of time then we could go back to Riley and their clinic would do the sensory eval as well. So, it looks as if we will be making several more trips back and for to Indy in the coming months for specialist appointments, evaluations, and follow up appointments, but for now it just feels good to get the ball rolling.

As I drove home from the appointment and even now as I type this post, I am still processing this all. Though we've had suspicions of Asperger's and knew that something wasn't quite right it still comes as a bit of a shock. Even though a diagnosis doesn't change any of the day to day challenges and gifts Hannah has, doesn't change who she is, it still smarts a little bit to have someone lay it out there in front of you so matter of factly like that. To say, yes your daughter does have a problem and she will most likely always struggle with it. No parent wants to hear that even if they already know it's true. Without a diagnosis there is still hope that it will all one day magically resolve itself. Then again, with a diagnosis there is hope too I am starting to realize. There is hope that she will have access to services and supports along the way that will help her to become a successful and thriving adult one day who can argue the pants off of the best trial lawyer in the country! :) I'm sure I'll go through struggles and doubts and probably some self pity as we move along this path, but for now I think I can go to bed relieved that God has my little girl tucked safe in his arms and that everything will work out according to His plan.

Dinosaur Dreams

Today Hannah woke up from her nap muttering. I went into her room to find her stretched across her rocking chair covered up with a blanket. She turned her head when she heard the door open and whispered, "I don't like the dinosaurs." After some questioning and several serious insistences that she indeed DID NOT like the dinosaurs I have come to the conclusion that she had a dream about dinosaurs being at McCalisters (the restaurant where we eat at after church most Sundays). She's never expressed any fear of dinosaurs before. We have several books that portray them in humorous roles and have never discussed them being scary at all, BUT last week at preschool the theme was dinosaurs. I can only surmise that it was mentioned that dinosaurs were terrifying beasts (probably by one of the little boys in the class) and that overpowered all previous experiences she's had with dinosaurs. It's interesting to me that this fear manifested itself as a dream instead of her mentioning it after preschool one day. Other than recounting her dream, she has made no mention of dinosaurs after school or any other time pretty much ever. I wonder if she's been having other dreams that are scary that she hasn't told me about and this is why she has all of a sudden started insisting that she sleep with the light on. Something for me to think about I guess.

We finally got Hannah's appointment with the developmental clinic set up. It's not until February! I knew it would be a long time, but I guess I kinda hoped that somehow we'd get in sooner. We also have a meeting set up for December to begin the transition from the early intervention agency to the local school system's special education department. Tonight was Hannah's six month review with the early intervention agency and she blew her case coordinator away by reading dozens of words to her off of flash cards. Hannah's therapist just smiled one of those "I told you so" smiles and gave me a knowing look. No one ever believes us when we say that Hannah is reading. It's made even more unbelievable when they know that she's receiving special services for sensory problems. Unfortunately, this will probably continue and make our fight to get Hannah access to the services she needs and deserves difficult. Because her challenges and gifts tend to cancel each other out, it often appears that she's just average and that she has no problems and also isn't exceptional at all academically. This fact could keep her out of gifted programs AND out of special education services to ensure that her sensory needs don't prevent her from meeting her potential academically. I often worry that when she enters school she's going to be bored out of her mind, socially frustrated and anxious, and not have anyone who is willing to help her succeed. I suppose we'll cross that bridge when we get there (although it could be sooner than we think!), but at least this meeting will be a good start.

Hannah's been learning more and more words lately and now has 20+ sight words. Tonight she read me another book. I'm always so proud when I see her stop at a word she doesn't know and attempt to use the context, pictures, and what she can decode to figure it out.

Last week while Kyle was in Puerto Rico, Heather came to stay with Hannah and I to keep us both from going insane. I'm so thankful that she did. Things went so much more quickly than they would have otherwise and Kyle was back before we both knew it. Heather brought her two dogs (Heinz and Maverick) with her so we had 4 dogs, two cats, two adults, and a toddler in the house! It was really quite a full house. Hannah really enjoyed having Aunt Heather stay here. Most of the time she didn't want me to do things with her. She wanted Heather instead! She even tried to convince my non kid person sister to give her a bath! That would have been a sight to see! It was pretty funny to watch Hannah pushing around and ordering around Heather's dogs too. We have little dogs, but Heinz and Maverick are dobermans (103 and 60 lbs respectively) and lately Hannah's been a bit leery of big dogs. However, after a few hours you would never know it. She'd just go up and push them right out of her way.

The other day I was eating M & M s and Hannah wanted some. I gave her my standard answer about not being able to have them until she was older. She then told me very matter of factly, "I can have them at Mamaw and Papaw's though." I guess the old saying, "What happens at Grandma's stays at Grandma's" doesn't apply with Hannah. This isn't the first time she's told us that she's done something at another person's house that she knows that she's not supposed to do or eaten something she knows she's not allowed at home. She's also started "arguing" when we tell her she can't have or do something by telling us that the other parent allows her to do it. This is usually her telling me that daddy allows her to do it. For example, she always wants to jump up the stairs or go up the stairs in some other unorthodox fashion like backwards or sideways. I don't let her because our stairs are steep, there is concrete at the bottom, and I don't have good enough balance to stop her from falling and keep myself from falling should she lose her balance and take a tumble. One day when she wanted to jump up the stairs and I told her no, she replied, "With Daddy I can do it!" and gave me a very defiant look. We're in for a real treat I'm sure once she's a little bit older and learns how to manipulate the system and pit us against each other!

Routines

Hannah has always been one to love routines. I love them too so I can totally understand where she comes from, but sometimes her love of routines can cause her undue stress. For example, one of her current most endearing routines is the final segment of her bedtime routine. After being tucked in and kissed good night Hannah MUST say and the adult putting her to bed MUST repeat (or hysterics are involved) the following sequence as sort of a call and response as we are walking out the door.

H: I love you

M or D: I love you

H: Sweet dreams

M or D: Sweet dreams

H: Bye

M or D: Bye

H: Goodnight

M or D: Goodnight

This sequence used to be repeated over and over again multiple times until it was timed just perfectly to slip out the door and lock it before she could start it again. There were times I must have said it 10 times through or more. If we stopped in the middle or tried to tell her we weren't going to say it anymore OR if we didn't hear her start the sequence again as we were shutting the door then she would scream hysterically something to the order of "I need sweet dreams Mommy." or whatever portion we failed to repeat. Ignoring the hysterics were no use and one just had to suck it up and go back in there and finish up the sequence. At first I thought she was using it as a stalling technique since she is a MASTER at stalling, especially before bedtime, but as time went on I realized that it was a comfort routine for her that helped her settle down to sleep. Still there came a point where comfort or not, eventually I could take it no longer. I sat her down about an hour prior to nap time one day and told her we were only going to say I love you, sweet dreams, bye, goodnight one time and then we were going to leave. I reminded her of this fact as we were getting ready for her nap and then again just as the sequence was about to start. After the end of the sequence that nap she asked, "One time?" and I replied, "Just one time." and that was the end of that. She lay down and went to sleep. I congratulated myself for my brilliance and wondered why I hadn't done this sooner, after all Hannah is a smart girl and can often be reasoned with if she's not already on the path towards a meltdown. At bedtime that same night I reminded Hannah about the new one time rule and then went on about her bedtime routine. When we got to the final goodnight she again questioned, "One time?" Again I answered, "Just one time." Just as I was about to shut the door she said, "All done?" and I replied, "All done," and quickly shut the door. From that day on, "one time?" and "all done" became added to the nightly goodnight sequence, but so far the cycle has stopped there. Hopefully I have not replaced one monster with another that will cause this sequence to grow in length continually instead of merely repeating itself, but right now we are holding steady. So, I choose to continue to think my one time rule was brilliant and can fully enjoy a sweet goodnight exchange with my daughter.

Speaking of comfort, Hannah has been having a lot of anxiety lately and has been really leaning heavily on any sort of comfort she can find and has developed some new "techniques" I'll call them to bring herself comfort. The first one is sleeping with the light on. Every night or nap time we turn out her light after her story. She then lays down for us to sing her a song. After the song she says, "I can turn the light on if I want to?" She waits until we are done with her routine and we are out of the room and then she gets out of bed and turns her light back on. I don't think she's scared of the dark. She could be, but she hasn't verbalized any fear about the darkness or monsters or anything. So, I just think it's a comfort thing. She likes her light on and it's comforting for her to have control over turning it on. Another comfort thing she's developed is constantly asking questions she already knows the answer to to get reassurance. For example, lately she's been a bit shy about big dogs. I'm not sure what sparked this hesitation, but it's there. Whenever we are going somewhere where she knows there will be a dog she says where she wants the dog to be in the form of a question. Here's an example, "Finn will be in the barn?" or "Sidney will be outside?" She knows that most likely those dogs WON'T be where she says they will be and seems to just be looking for reassurance that she needs to prepare herself for the dog and that she'll be ok.

I don't think I posted earlier on Hannah's Halloween experience. This year we were invited to go trick or treating with some friends of ours. Last year we didn't take Hannah trick or treating. She just dressed up in her costume and helped pass out candy. We also went this year to the Halloween open house that the gym where Hannah has gymnastics at had. They had several obstacle courses set up for the kids and the gym was all decorated for Halloween. It was a blast and Hannah didn't want to leave to go trick or treating when it was time to go! I was worried about how she would do trick or treating. I thought the other kids in costume might scare her or going up and talking to all those strangers would freak her out, but she did great! She was a little shy, but by the end of the night she was boldly walking up to houses alone and saying trick or treat and even remembering to say thank you! I was so proud of my little girl!

She's Only Two

She's only two (or one, or 10 months, or 6 months, or whatever age Hannah happens to be now or in the future). I know people mean well. I know they want me to not worry about Hannah. I know they think there really isn't anything to worry about. . . . . BUT those words drive me crazy. They drive me crazy because although I know most people mean well, I also know that they just don't get it, get what it's like to parent a child with Sensory Processing Disorder (SPD) and Hyperlexia, and many of them have no desire to even try to get it. If they did, they would never say, "Don't worry. She's only two. She'll grow out of it." October is SPD Awareness month and many of the blogs I frequent of families raising kids with SPD and/or hyperlexia have chosen to write a bit on their personal experiences with SPD. I decided to rip off their idea and speak candidly and bluntly about what a day in the life of the Spontaks looks like. Some days are better than the day I will describe and others are much much more difficult, but this is fairly typical of what we do on a daily basis.

7:00am I let Hannah out of her room. She's been reading books to herself for probably an hour or so already and I can't justify making her stay in her room any longer! We choose clothes to wear and head to the bathroom where the fun begins. She goes potty and then it's time to brush her hair and teeth and wash her face. Hannah immediately chomps down on the toothbrush and refuses to let go of it or she sucks all the toothpaste off the brush. I get in a few brushes somehow in between her refusals to open her mouth and let me put the toothbrush in and her holding the toothbrush hostage between her teeth. When it's time to rinse her mouth out Hannah holds the water in her mouth and refuses to spit it out. She then tries to jump off her stool (she's a huge sensory seeker!) and ends up spitting water all over her clothes or the floor. Meltdowns occur if her clothes get wet (wet clothes are a no no) or a tantrum occurs if the water goes all over the floor and then she slips and falls on the wet linoleum! If I'm lucky we get through this stage with no major sensory meltdowns or toddler temper tantrums, but that usually doesn't happen. Next we move on to washing her face. Hannah HATES to have her face washed although she has learned to tolerate it. We usually get through this ok, but it puts her on edge. Next comes brushing her hair. If we make it through the brushing and putting in the ponytail without a major meltdown the morning is a success. Feeding the dogs and cats is next on her list of must dos for the morning. She absolutely cannot resist splashing in the dog and cat waters and then promptly sticking her hand inside the food and swishing it around so that bits of gritty pet food dust stick all over her fingers. Playing in the pet food is almost an obsession for her. She gets so much needed sensory input from it that she just can't resist how it feels. We try to replace this undesirable outlet with more acceptable ones such as rice and bean play, but the pull for immediate sensory gratification is strong in the morning and I usually lose that battle. Next comes breakfast. By this point Hannah needs to do some heavy work or get some proprioceptive input, but she is also starving. I must make a judgement call as to which type of need I'm going to fulfill first and risk either a sensory meltdown or toddler tantrum because the other need goes unmet. It's a Catch 22 really and I almost never win. Usually we have at least one meltdown or tantrum during this phase of the morning. If I choose sensory first then I try to get Hannah to either jump on her trampoline or bounce her on her exercise ball. Then I smoosh her with the ball while she lays on the floor and round the early morning portion of the sensory diet off with some vigorous swinging between mommy's legs. Now on to breakfast. Hannah eats her breakfast and then at some point during the meal decides she's going to hold milk in her mouth and refuse to swallow. This is a result of her oral sensory needs and it drives me nuts! It's so dangerous because she often times ends up choking and sputtering once the food or drink does go down as she tries to do something else like jump off her chair. What starts out as a sensory issue usually turns into an obedience/power struggle as I try to make her swallow. She almost always ends up in time out (thus beginning the discipline ladder) from these struggles.

We progress through the discipline ladder and hopefully we don't make it to a reminder (AKA a spanking), but often times it goes that far or farther. Once we are able to move on from that and finish breakfast (preferably without any further food or drink holding and no more discipline) we start our day. 3 days out of the week we have places to head right away. Tuesdays and Thursdays it's preschool and on Wednesdays it's gymnastics. Right before leaving we do a sensory tune up in preparation for being in a group of kids. This is a HUGE challenge for Hannah and the reason we even found out that she had sensory problems to begin with. We usually either play play dough or with some dried rice or beans for 10 minutes or so and then top it off with some heavy work/vestibular stimulation in the form of crashing onto a bean bag, jumping on the trampoline (or a bed) or Hannah's personal favorite-swinging on her swing set. Now that Hannah's sensory diet is firmly in place we have really been able to reduce Hannah's social anxieties and she is able to function almost like a neurotypical peer (albeit a very shy one, but still fairly age appropriate behavior). We've found that if we do an activity off of her sensory diet about 15 minutes before we ask her to do something stressful such as interact with other kids or be in a loud crowded place she can cope pretty well. We've also found that her sensory activity seems to have a therapeutic life of about 1 hour, 1 1/2 hours if we are lucky, before she needs something else off of her diet to keep her functioning well in a stressful situation. On the way to Hannah's social engagements she chews on her chewy toy to relax and satisfy her oral stimulation needs and hopefully reduce the tendency she has to chew on clothing, hair, or whatever she can get her hands on when she gets nervous. At both gymnastics and preschool she does very well as far as not having sensory meltdowns since both places are chock full of activities that play right into her sensory deficits. Still, being in those situations are still stressful for her and it really shows once she nears the end of the class or immediately after they are over. She is typically so exhausted from "keeping it together" that the slightest thing can send her into either a meltdown or toddler tantrum. Something as simple as having difficulty getting her sock on can push her right over the edge. Normally she can handle a mild level of frustration fairly well, but not immediately after a social encounter.

Next it's home we go for lunch. On Thursdays Hannah's friend Addie comes over for a few hours (I pick them both up from preschool) to play. Hannah interacts quite well with Addie and the two of them will actually play together, but Addie sometimes has trouble respecting Hannah's need for space and this can cause lots of hurt feelings and frequent meltdowns when they play right after preschool and Hannah is already on edge. I pick the girls up from school and instruct them to hold hands as we head into the parking lot. This is not something Hannah enjoys (Addie would hold Hannah's hand all day if she'd let her!), but I can't have them going in opposite directions in a crowded parking lot full of parents picking up toddlers and I need one hand free to carry all of their paraphernalia. After much cajoling, Hannah eventually agrees to hold Addie's hand and we make out way out of the building. At some point along our very short walk Addie squeezes too tightly on Hannah's hand or pulls her arm and Hannah throws herself to the ground screaming. Addie, the sweet thing she is, tries to comfort her by patting her arm or trying to hug her or getting up in her face to ask, "Hannah, what's wrong." This only makes the situation worse as there is an increase in physical contact and a personal space breach. I pick Hannah up and either squeeze her tightly and rock her vigorously back and forth or swing her between my legs until she is able to calm down and then we continue along our way. Things run fairly smoothly until lunch is served. Hannah insists on either taking too big of bites of her food or shoving bite after bite into her mouth until her cheeks are puffed up like a chipmunk and there is too much in her mouth to swallow or even to chew. Thus begins the mealtime battle only with the added dimension of another 2 year old watching and who needs watched! After we survive lunch, the girls typically go outside to play if it's nice. I swing Hannah and often Addie too on the swings or the hammock for 15-20 minutes and then force Hannah to go off and play with Addie by herself. Hannah's getting better and better at this and the girls usually do just fine as long as I keep a close eye on them to prevent anything that I know could possibly trigger a meltdown for Hannah. With two 2-year-olds running around like crazy someone is destined to fall down, bump their head, or mildly hurt themselves in some other way. If that someone is Addie (or me) then we experience one of the oddest parts about Hannah's sensory problems. For some reason (we have been told by her DT that this is common in kids with sensory problems) Hannah has a hard time processing and dealing with the strong negative emotions of others. So, if Addie falls down and starts to cry then Hannah will run screaming like a samurai warrior towards me (and just recently Addie unfortunately) with her arm flailing and her feet kicking and attempt to pummel me while sobbing hysterically. Now I have two crying children, one who might be hurt and another who is totally freaking out and attempting to hit and/or kick both me and the "patient." In the midst of this chaos I have to determine if the "patient" is ok while fending off blows from Hannah/shielding the patient from said blows, comfort the patient, and attempt to calm Hannah down. Typically I just have to let her go until I can get Addie (or whoever else is crying) taken care of and then I can attend to Hannah. Really the only thing that works to stop this kind of rampage is to grab Hannah, pin her arms to her sides, squeeze her tightly and either rock her back and forth hard or pat her back firmly until she exhausts herself and relaxes whimpering on our shoulder. :( I'd say this scenario plays itself out at least once if not more times each play date. Luckily Addie is an extremely forgiving child and loves Hannah dearly so even if Addie inadvertently takes the brunt of Hannah's rampage the two of them can continue playing once Hannah has had the appropriate amount of time to recover and done some extra sensory activities. 1:00 (or 2:00 if it's a Thursday) is nap time. Naptime is a struggle in our house and no one looks forward to it, but it's a necessity and so we persevere. Naptime routine consists of potty time, prayers, 3 books, and a song. I turn on her white noise, then Hannah must be covered with multiple heavy blankets (we are working on getting a weighted blanket to try to solve this particular problem) and tucked in so tightly she can barely move. If all goes well and she is exhausted enough she might go to sleep. It seems like we have runs where we might have several days or even a week of good naps, but they are not the norm. Each time we get our hopes up that maybe, just maybe we've found the magic solution we are sadly mistaken! Normally Hannah begins to scream as soon as the door is closed that she wants to snuggle in her chair (she has a rocking chair in her room). She is immediately bawling and banging on the door. As heartless as I feel, I simply wait and listen to be sure she doesn't hurt herself. Next I hear Hannah getting her books out and taking them over to her chair. She then sits in her chair and reads to herself to calm down, while rocking herself to sleep. This process usually lasts about a half hour to an hour although often she never does fall asleep. For those of you reading this and thinking, "Boy, does she need to do some sleep training on that kid." I assure you that we have read every book and tried every method of sleep training out there over the past two years, all to no avail. Hannah simply has sleep issues that go beyond the realm of typically toddlers and a typical solution just will not work. We've learned that sleep difficulties are often typical in kids with SPD and we have a few new things that we can try now that will hopefully be able to help Hannah. We're planning on starting with the weighted blanket as soon as my mom finishes making it and if that doesn't help then we'll try other more drastic measures such as a moving bed or even a vibrating mattress pad. While on vacation Hannah slept extremely well-much better than she does at home which is not the norm when we are in an unfamiliar place. We believe it was because of the movement of the ship which makes me think that we may eventually have to end up going to some sort of movement in her bed, but time will tell. Hopefully this new blanket will be just the ticket. If Hannah does indeed sleep, she does not wake up well most days. Sometimes she is even crankier than when she went to bed which tells me that even though she did sleep, she did not sleep well. This is something I relate well too since I never awake rested even after a full night of sleep. Once she is awake I have another difficult call to make. Do I do a sensory activity, take her to the bathroom, or get her a snack. Another Catch 22. She needs to go to the bathroom after holding it from her nap, BUT she is also hungry which makes her crabby just like a typical toddler, AND the effects of her last sensory activity have long since worn off which leaves us vulnerable to problems on the toilet-usually in the form of the sensory seeking behavior of hitting or kicking me. No choice produces good results. If I pick snack first we get sensory seeking behavior in the form of hitting or hording food in her mouth and possibly an accident because she hasn't peed in a long time which freaks her out because she hates the feeling of being wet. If I pick a sensory activity she often does not want ot comply because she's crabby from hunger and ends up being defiant which lands her in a time out which then results in an accident and more freak outs from wet pants. If I choose toileting first then there are the above mentioned problems from being hungry and the sensory seeking behavior. Usually I pick going to the potty first so I don't have to do more laundry and clean up a mess. We get through the post nap routine and then start up with more sensory activities: finger painting, bouncing on her hop ball, playing with shaving cream, etc. The rest of the afternoon I try to fit in free play, chores (I save anything with heavy work like laundry that Hannah can do for when she can help me to try to do double duty with my time), story time, studying her bible verses, and the "academic" activities that Hannah craves such as practicing writing, reading, and adding. Often it seems like there is not enough time in the day to do anything other than heavy work and other sensory activities and manage meltdowns.

At 5:00pm we eat dinner. By this time Hannah is pretty much done for. She's tired (mentally and physically), hungry, and just plain frustrated at the world. The hours between 4 and 7pm are her typical witching hour which I've heard is pretty typical for a toddler. Dinner is usually a repeat of either breakfast or lunch, but at least Kyle is usually here to help me and give me a break if it's been an especially hard day. From dinner on the rest of the night is mostly spent in survival mode--for me anyway. Hannah will often respond better to Kyle during this period since she hasn't seen him all day (although not always) so he tries to play with her some if he can to give me a bit of a break. We'd love to do something fun as family after dinner, but usually that doesn't work out well for us because Hannah is too strung out to handle it and the activity often ends badly.

Every other night is bath night. Despite not liking wet clothes, Hannah LOVES baths. She gets so much stimulation from splashing in the water (as long as it doesn't get in her eyes), and feeling the bubble bath, but I've grown to dread bath time because it often turns into a battle. Lately it's been over drinking the bath water/holding it in her mouth or licking the soap/shampoo. After bath comes a massage which Hannah also loves, but these too can become battles because Hannah really loves to feel the lotion which I am ok with, but then she attempts to lick it off of her hand which I am NOT ok with. After those two battles the rest of the bed time routine consisting of jammies, snack, teeth brushing, prayers, books and song go about as well as you could imagine. We usually close her door somewhere between 7 and 7:30pm and pray that she doesn't scream (or at least not very long).

Don't get me wrong, my days aren't awful. My little girl is a joy to be around. I love her very much and we have a lot of fun together. I can't even begin to imagine not being home with her every day. BUT they are exhausting and take A LOT of planning. The amount of work and thought that has to go into just leaving the house for a short errand is crazy, but the benefits definitely out weigh the hassles. Not every day is like the one I described. Some days are great and I begin to wonder if maybe just maybe she's outgrowing her difficulties (even though I know she isn't). Other days are much much worse. Some days consist of one long meltdown. You just never know what you are going to get, but with therapy we are finding that we have more and more of the good days than the bad and that the bads are less bad than they used to be.

One thing that I think others don't also get that I wish they did is that the effort that goes into helping Hannah succeed and making it so that the untrained eye doesn't notice much of a difference between Hannah and other two year olds is staggering. But it is worth it. If we work hard enough when no one is looking then it can appear that we aren't doing anything at all and that in itself is reward enough.

If you are curious to learn more about SPD, here are links to several of the blogs that I follow that have posted about SPD reccently. These moms are so much more knowledgable about SPD than I am and are much further into the trenches with it than we are yet. I go to them when I have questions or just need to feel like there are others out there struggling with the same issues we do since I haven't met anyone face to face who has a child who struggles with the same issues that Hannah does. They are good reads. Enjoy!

http://goodfountain.wordpress.com/

http://ourlittletongginator.blogspot.com/2008/10/spd-and-adopted-child.html

http://pancakesgoneawry.blogspot.com/2008/10/sensory-processing-disorder.html Start with the October 3rd post and read to the current one. She's written lots of good posts.

http://threechannels.com/?p=387

PS. I've finally posted some pics of Hannah from our vacation from back in the beginning of September. For those of you who are wondering, yes that really is a macaw in Hannah's stroller. It gave us quite a fright when it walked up to us as we were showering off the ocean salt at an outdoor shower and then climbed right up into the stroller! We had no idea what to do! Clearly they didn't go over the protocol for removing a wild tropical bird from your stroller on the cruise ship excursion talk! We learned later (long after it had tired of the stroller and moved on voluntarily) that it was the resort pet and was known to have an odd affinity for strollers.