I Can't Take This!

The title of this post comes not from me (as many of you might expect!), but from Hannah. It's a quote from the middle of the night last night. She had woken up to go to the bathroom and after taking her back to bed and getting her settled she kept scratching and scratching at a bug bite on her back. I could tell she was really trying not to scratch, but it must have been itching something fierce because after several cycles of trying not to scratch and then scratching anyway she dramatically flopped over in her bed, turned to me and said, "I just can't take this anymore!" and then buried her head in her pillow! I had to stifle a laugh. I felt for the poor thing because I too have impossibly low willpower when it comes to not scratching something that itches, but it was so darn funny the way she said it and not at all how I expected a four year old to complain about a bug bite! She must of gotten that phrase off of Kyle or I, but neither of us can determine which of us says it enough for her to have picked it up. As far as we know, neither of us says it all, but she has to have gotten it from somewhere. Surely she just didn't pull that phrase out all on her own.

Hannah accomplished a huge feat this past weekend, one that Mommy still has yet to conquer. She learned to dunk herself under water and now she's an addict! She went from being pretty scared of getting any water on her face to begging Kyle to throw her into the air at the pool so that she could crash back down and go under water in one day! Now she's jumping into the pool on her own, putting her face in the water and pretending to swim, and of course begging to be thrown. That's my little sensory seeker! I'm quite excited about this development because swimming is great proprioceptive input for her and as an added benefit it tires her out too! Another thing I love is that I no longer have to tolerate screams in the tub about me getting water in her eyes. If she can stand getting launched into the air and crashing down into the pool and going completely under then she can handle a few drips of water running into her eyes! This tells me it's definitely time to start swim lessons this winter. Now that she's confidently going under and swimming around the pool independently with her flotation belt on, I think she's totally ready and capable of taking directions from a swim instructor. This also makes me feel so much calmer about us living next to the ocean. I don't have to worry as much now about her panicking if she were to accidentally go under or get hit by a wave in the water. Just her being more comfortable in the water makes me more comfortable taking her there.

Today Hannah had one of her oddest meltdowns ever. Her morning started off great and then when it was time to get ready to go I asked her to put her socks on. For some reason this set her off and she refused to comply. Socks were not an option with her AFOs and shoes were not an option for her school so she had to put her socks on in order to put her shoes on in order to go to school. Eventually she just went nuts. She started screaming and hitting and kicking and pinching. She was using all of her strength and truly intending to hurt. After about 15 minutes of this, she all of a sudden walked over to the toilet (we were in the bathroom) and sat down and closed her eyes. She sat there for about a minute totally silent and then began sobbing hysterically. I went over to hug her and ask her why she was crying and she said, "I just started. I don't know why, but I can't stop." She cried for probably 10 minutes with me holding her and then eventually she was able to get her socks and shoes on, get washed up and then leave for school. She was quite clingy when I dropped her off at school and I worry that she's going to have a rough time, but they haven't called yet so I hope that means so far so good. The odd thing is that usually she rages until she's worn out and everything just fizzles out. This abrupt end to the aggression and the beginning of the crying is very abnormal for her. I'm not sure what to make of it.

Sensory Play Room Take 2

Before moving to Rhode Island we had turned our spare bedroom into a sensory playroom for Hannah. While living in our temporary apartment when we first moved we really missed all of the tools we had developed to help Hannah regulate herself. Finally, after almost 5 months in our new house, we have a sensory playroom for Hannah again. We have some of the same elements that we had back in Indiana while others had to be revised because of the space we had to work with. Some things are much much nicer than we had before, while other aspects of her old playroom we really miss. Before I go into what her old room was like and what we've done with the new room, I'll fill in those who are new here about what sort of sensory problems Hannah has.

Most people are very familiar with the "5 senses," sight, smell, touch, taste, and hearing. What many people don't know is that there are two more senses often described as the invisible senses, proprioceptive and vestibular. The vestibular sense I had at least heard of before. When someone feels vertigo or has an inner ear infection, the vestibular sense is involved. Your vestibular system controls balance, senses movement, and helps with spatial orientation. Hannah's vestibular system is not as sensitive as it should be. As a result she craves excess movement such as spinning, jumping, swinging, etc. She almost NEVER gets dizzy and we can't swing or spin her high or fast enough. She has poor balance (although it is improving) for her age, but she still takes excessive risks in order to get her vestibular "fix." It's almost like she's a drug addict in that her little body compels her to do whatever it takes to get the sensations that her body craves that the rest of us feel just by living our lives and take for granted. When she doesn't have enough vestibular input she is wild, overly anxious, defiant, withdrawn in overstimulating situations, and less willing to interact with peers. She basically doesn't feel right in her own skin, but doesn't know what to do about it. The proprioceptive system tells your brain where all of your body parts are in relation to each other. When someone is asked to take a field sobriety test and close their eyes and touch their finger to their nose the officer is testing their proprioceptive sense because intoxication impairs your sense of proprioception. One of the most common visible signs of proprioceptive problems is clumsiness. Hannah's proprioceptive system is also under reactive. She is extremely clumsy. She trips often, misses her chair when sitting down, and is constantly falling or bumping into things. She has trouble judging pressure so she often hugs too hard, pats too hard, and purposely crashes into people and things so that she can feel where all her body parts are. She doesn't just know where they are so she instinctively craves pressure and input from outside her body to replace the sensations that are not being transmitted properly within her body. Besides problems with proprioception and her vestibular system, Hannah is also over sensitive to smells, sounds, and touch.

OK, back to the playroom. Hannah's sensory playroom almost exclusively focuses on her vestibular and proprioceptive challenges because those are the most prominent and hard to deal with. The two things that I miss the most about her old playroom are a chin up bar that Kyle mounted to the closet door frame low enough for Hannah to grab it and swing and flip on it. This chin up bar worked both Hannah's proprioceptive and vestibular systems and she LOVED it. The other thing I miss is her hammock. We put an old queen sized mattress on the floor and mounted a hammock to the wall. We would swing her vigorously in the swing and also flip her out of the hammock onto the mattress. The hammock was also awesome because it worked her vestibular system and gave her deep pressure (proprioceptive system) which she craved. In her new playroom we have room for her to use her hop ball (works both vestibular and proprioceptive systems) in the house, there is a pole for her to spin around (vestibular), and (my favorite addition) a crash pit which works her proprioceptive system. For the crash pit I got a cheap blow up swimming pool (only $8 off season) and filled it full of pillows, blankets, and her stuffed animals. Hannah runs across the room and jumps into the pit giving her body the input it craves. Then when she is tired of crashing she burrows down into the stuff in the pit and just relaxes and watches a movie. All those pillows give her deep pressure that is calming for her. In her playroom we also have a mini trampoline, a disc swing, an exercise ball, weighted medicine balls, and a child sized shopping cart and lots of bags, baskets, and buckets for carrying and pushing heavy things around. Most of the things in Hannah's playroom are also at her OT's office, but the OT's equivalents are very expensive to buy. There is no way we could possibly afford to outfit a playroom for Hannah with all the features we wanted if we had to pay what things cost in the therapy catalogs. However, it's possible to make a fully functional playroom for not much money. The most expensive thing in Hannah's entire playroom was her mini trampoline and it cost $60. If you have an older child (Hannah was only 2 and was not very coordinated when we got it) you could get one much cheaper at Walmart, but we wanted one with handles since Hannah did not have good balance.

Here are some past posts that mention various aspects of Hannah's sensory difficulties.

http://gnatalie77.blogspot.com/2008/07/two-years-old.html

http://gnatalie77.blogspot.com/2008/09/power-of-sensory-diet.html

http://gnatalie77.blogspot.com/2008/12/holiday-mayhem.html

http://gnatalie77.blogspot.com/2009/01/unqualified.html

http://gnatalie77.blogspot.com/2009/01/and-winner-is.html

http://gnatalie77.blogspot.com/2009/03/rough-weekend.html

http://gnatalie77.blogspot.com/2009/03/public-toilets-hand-dryers-and-garbage.html

http://gnatalie77.blogspot.com/2009/04/i-have-question.html

Rough Weekend

It's been a tough weekend in the Spontak house. Since Hannah is still at risk for bleeding after her surgery and because of her pneumonia she's not allowed to do much activity. This poses a BIG problem since most of her sensory diet revolves around proprioceptive input-jumping on the trampoline, swinging on her bar or us swinging her around, spinning, running, carrying or pushing heavy stuff, etc. These are not only on her sensory diet, but they are her favorite activities. She's such a sensory seeker that it's almost torture for her to be banned from them (for both her and us). Since her sensory needs are not being met she's been in rare form as far as behavior is concerned. We've been dealing with LOTS AND LOTS of hitting. Usually it's not hitting for any reason in particular, just a way to meet a sensory need that is normally met elsewhere. Tonight she was crawling and lunging all over me on the couch and just being wild. I felt so bad for her. It's hard to know where to place the limit. Hitting is not allowed. She knows that. We enforce that. BUT when she can't meet her needs any other way because we aren't allowing it. It's so difficult to see her struggle. It's like she simply can't control herself. After each and every time out she can easily tell us why she got the time out, but it doesn't do anything to deter future incidents. Top everything off with the fact that she feels crummy and her entire world is disrupted right now as we prepare to move and you've got a recipe for disaster. I've found myself with less patience than I should have because I'm also stressed about the move and how it is/will affect Hannah and that lack of patience is the exact opposite of what is needed right now. Please pray that after Hannah's follow-up appointment with the ENT on Wednesday she will get the go ahead to resume normal activities so that we all don't go crazy!

Thankful

I know Thanksgiving has come and gone and everyone else has done their "thankful" posts, but I'd still like to write one. I am SO thankful for my family. Hannah and Kyle are my reasons for getting up every morning. I am eternally grateful for God placing them both in my life. When I think about my life before the both of them it just seems odd. I feel as if they were always a part of me. I am thankful for a warm bed to sleep in and plenty of food to eat. I am thankful to live in a country where I can worship God without fear of persecution. I am thankful for my friends and extended family and all the fun times we are able to share together. I am thankful for Tiffany and Mike and the sacrifice they made in order for Kyle and I to become parents. I am thankful that they have both chosen to continue to be a part of our lives. I am thankful that Hannah will always know about her birthfamily and if she ever has questions she will know that she can either ask Kyle or I or just pick up the phone and call Tiffany or Mike and ask them. Most of all, I am thankful for Jesus and his amazing sacrifice of dieing on the cross for my sins so that I can live forever in Heaven with him.

Moving on to current news in the Spontak household. . . . Poor Hannah has a double ear infection AND a staph infection. Along with that she's got a cold and a horrible cough. She's miserable. I feel so bad for her. I gave behavior boot camp (more on that in a moment) a rest today to simply cut her some slack.

Even though she's sick, Hannah's been doing some mighty fine reading lately. Her sight word vocabulary continues to increase and she's starting to read sentences consisting entirely of words that are sight words for her quickly enough to have some comprehension. This is a big deal. She no longer labors over every single word pausing to notice each and every word, but reads fluently from one word to the next until she reaches one that is not immediately recognizable and then attempts to sound it out. Tonight in the bathtub she was asking me to write sentences for her to read on the bathtub walls using her tub crayons! Don't get me wrong, we aren't reading chapter books here or anything, but still mighty fine reading for a two year old if I do say so myself. Here's a sampling of what she was reading tonight in the tub. I can see a cat. The dog can run. Hannah sees the sun is up. Daddy loves Hannah. We like cats and dogs. Can you see the bus? They see it. We like to go to the zoo. Do you like bees? Mommy and Daddy love me. He is up. Is it on the top? No, you can not run to the bus. Are you sensing a theme here? :) One thing that is really cool is that she's very good at using picture clues and context to figure out an unfamiliar word. For example, the other day she was reading a book she had never seen before that had two sentences per page and followed basically the same format on most pages. The first line was usually, "Can you see it?" Then the next line was something to the effect of, "I can see a ____________." (or we see a, they see a, he sees a, etc) Most of the words for what the people saw were not words Hannah is able to sound out, but she was able to figure out the mystery word using the context and the picture on each page. She read the entire book without error pointing to each and every word as she said it, even difficult words like rooster, horse, and mouse. I was so proud of her. I thought Kyle was going to have a heart attack when she picked it up and read it like a pro for him. When she finished he turned to me and said, "Does she have it memorized?"

Ok, about behavior boot camp. Lately Hannah has been VERY sassy. She says "NO!" all the time, shouts, whines, and uses a nasty tone of voice to attempt to get what she wants. I've tried about everything, but hadn't really seen any results. Things got really bad over the holiday weekend after being indulged by various extended family members at Thanksgiving gatherings. I finally had enough and informed Hannah that she would no longer get warnings about speaking rudely, arguing, or saying "NO!" when told to do something. Now she is immediately put in time out without discussion or elaboration for any of those offenses. So far this shock and awe method has been working fairly well, but it's too early to say if it's a real change in behavior or if she's simply feeling out the changes.

Hannah's appointment with the orthopedic doc is Monday. I'm very anxious to go and see what they suggest. Lately her running style has become more and more "odd." For you horsey people reading, she very significantly wings out when she runs and this really slows down her speed, causes her to veer to one side, and seems to increase her tripping. Tuesday is our meeting with the special education department within the local schools to begin the transitioning process from early intervention to the public school system. I am also anxious for this meeting since I just have a feeling that it's going to be a tough road given her gifts to convince anyone that she ought to qualify for special services. I plan on taking some videos of her at school and at home to demonstrate the significance of the difference between her capabilities and what she is able to display at school to take to the developmental clinic in February, so if I need to use some of that footage to convince the folks here that there are definite issues then I will.

Hannah is seriously excited about Christmas this year, but doesn't quite get that Christmas is a holiday/event/day and not a place. Multiple times a day she asks me if we are going to Christmas today. She's still sorting out the secular and religious aspects of Christmas. Today I gave her a children's nativity set to play with. While I was opening it up she saw Jesus in the manger and correctly said, "That's baby Jesus!" Then she caught a glimpse of a donkey and asked, "Is that Jesus' reindeer?" I had to bite my lip not to laugh hysterically in her face. A lengthy conversation resulted detailing the characters in the Christmas story and differentiating them from Santa and his friends. Last year she wouldn't go near a Santa and referred to all Santa's she saw as "No-Na" AKA Noah as in Noah's ark. This year she's requested several times already to go see Santa (and his reindeer). I plan on taking her, but I'm not optimistic about the prospects of the visit being successful. Then, you never know. She does have a thing for men with facial hair! I'm really looking forward to decorating the house and picking out the tree with her this year. I just know she's going to have a blast. Now will be the time when she starts understanding and remembering traditions and begins to form warm fuzzy (hopefully) holiday family memories. We will also be going to see the Nutcracker in a few weeks. Kayla (Hannah's birthsister) will be performing in the production and we've been invited to attend. I'm super excited because I've always wanted to see the Nutcracker and also because I think Hannah will love it. While we were on our cruise in September Hannah was enthralled by the Vegas style shows they had each night. She loved the singing and dancing and would get up and dance along. I think she'll really like the music, costumes, and dancing at the ballet. I just hope she'll be able to sit through the whole thing. I'm not sure how long it is.

The new play room is proving to be a resounding success. We spend TONS of time in there, mostly on the hammock. It's been quite helpful in calming her when she's out of sorts and an awesome way to do a little sensory pick me up as needed throughout the day. She loves to climb in and out of the hammock and to throw herself to one side so that she tips over and falls out onto the bed. She thinks it's hilarious and we get that glorious "coo" of happiness we used to hear when she was a baby when she was in her swing or when Kyle would do the "Demon Drop" with her (hold her in a prone position over his head and pretend to drop her to the floor, slowing the speed just as he reached the floor to lie her gently on her back). We hadn't heard that lovely sound for quite some time. It really is the ultimate sound of happiness and contentment. I wish I could recreate it for you. Maybe I'll try to get some video of it.

PS. The pictures are from Grandkids' weekend at Mamaw and Papaw's house in November.

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.

Two Years Old

Happy Birthday Hannah! I can't believe it, but my baby is two years old. Where in the world did the time go? This past year has brought so many joys and challenges that I can hardly believe we managed to fit it all into one year! As promised, I have many more updates for you all. I'll start with Hannah's party since that is the title of this post. We had the party at the gym where Hannah takes gymnastics class and it was wonderful. Hannah was relaxed and totally in her element. She had a blast and was a good hostess as well. Little did we know that by having the party at the gym we were picking the best possible location/activity to set Hannah up for success with all of those people (more about that in just a sec). Hannah of course was spoiled rotten by all the gifts, love, and attention she received. She still hasn't stopped talking about some of her favorite things from the party. After the official party was over several people went out for a late lunch/early dinner and just sat around and chatted. Hannah did a great job of spreading the love around and visited each table for an extended amount of time with no fuss at all. It was a great day! Thanks to all who were able to come and share Hannah's special day. Those who couldn't make it, we missed you.

Ok, back to what I was saying about our venue choice for the party. As I mentioned in my last post, Hannah started seeing a developmental therapist for her social issues. On her first visit the therapist did some additional testing on Hannah and determined that sensory integration problems were at the root of Hannah's social difficulties. We had never even considered that Hannah had sensory issues. The tests showed that Hannah had oral and tactile defensiveness, low threshold, low registration, and sensation avoiding. Unless you are an OT this probably means nothing to you. Even after the research I've done it's hard for me to understand fully, but what it basically boils down to is that because Hannah is concentrating so much on these sensory issues she has little energy or tolerance to deal with socially challenging situations. The therapist is creating what is called a sensory diet for Hannah to help her meet some of these unmet sensory needs she has and to desensitize her to some of the stimuli she is defensive to. Contrary to what it sounds like, a sensory diet is not food at all. It's a list of specific activities designed to provide certain sensory needs throughout the day. Hannah's personalized sensory diet is not complete, but the therapist gave us a list of activities to try out and use on our own and we are already seeing amazing results. Today Hannah played with a 4 year old boy in the crowded playplace at the mall for almost 20 minutes! She was interacting with him, having conversations with him, displaying parallel play, and even initiating play. This has NEVER happened before. The other day the same thing happened with Evelyn. Hannah played very well with Evelyn and even shared a VERY cramped space inside her toy car. Hannah was even the one that initiated that arrangement! Apparently many of the activities involved in gymnastics and tumbling meet Hannah's specific needs which explains why we have always noticed that she was much more tolerant of other kids while in her gymnastics class. I was always puzzled by this given how chaotic the environment is, but seeing the results of her preliminary sensory diet makes me a believer. Hannah will continue with gymnastics for as long as she remains interested and we can afford it. We are so pleased so far with Hannah's therapy and are SO hopeful that things are going to continue going well.

Potty training is going quite well. Hannah has had 3 days of being dry all day-including her nap. Now these weren't 3 days in a row dry, but it's still a really good start. She's also getting a lot better about telling us when she has to go potty before she actually has an accident. She's definitely not 100 % in that area since there are many many things she would rather be doing than sitting on the toilet, but it's progress none the less. The other day I was in a store that had a play area for kids. I was standing just behind a rack so that she couldn't see me, but I could hear her. She stopped playing, called for me and when I came to get her she said, "I need to poop. Then play again?" She was willing to stop playing and go to the bathroom as long as I reassured her that she could go back to playing as soon as she was done. I was so proud of her!

Hannah had another overnight at Mamaw and Papaw's house a few weeks ago and she had a blast. I think she wore them out, but they seemed like they did ok. She was totally pumped to go stay so that she could feed the horses. That girl REALLY likes feeding the horses. Speaking of horses, Hannah also went to visit Aunt Heather and ride Harley. Hannah LOVED riding Harley and even got to trot all by herself. Harley was such a good boy doing pony rides for everyone. Hannah really liked visiting Heather and even made Heather take her to the bathroom and hold her once when she got hurt. Heather may not be a kid fan, but Hannah's sure latched onto her.

One of Hannah's newest skills that we aren't especially pleased with is opening doors. She can now get into and out of pretty much any room that doesn't have a baby proofed handle. Consequently, we now have to lock her into her bedroom at night and for naps. This DOES NOT make her happy, but we can't have her just wandering the house by herself at night. Speaking of getting out of her room, the other day Kyle forgot to lock her door when he put her to bed. The next morning we were awakened by Hannah coming into our room and grabbing Kyle. We didn't even hear her open her door or ours! She has also learned how to open bi fold closet doors. Several times I have come into her room after naps to find all of her dresser drawers emptied and the clothes hid around the room, diaper packages opened and the diapers mangled and strewn about, and the trash can emptied and scattered around the room. One day she even found the wipes container and pulled every single wipe out and wadded them up and threw them around the room! UGH!

Hannah has been playing a lot lately with her new play dough and sidewalk chalk. She gets quite a kick out of them both. They are hours of cheap fun. Fortunately these are both activities that the therapist recommended as part of her sensory diet so it's nice to not have to try to squeeze in all totally new things. Jumping is another skill that Hannah is working on perfecting and she is getting quite brave about it. She regularly attempts (and sometimes succeeds if I'm not careful) to jump off of our deck from the top step or to jump off of chairs and the couches. The therapist told us that jumping on a trampoline was also a recommended activity so we used one of her birthday gift cards to buy her an indoor mini trampoline with handles for her to hold onto. It just came in the mail yesterday so we haven't had a ton of time to play on it yet, but so far it's been a hit.

I've mentioned before that Hannah has been naming things lately. Well, she has this cabbage patch doll that she got for Christmas. It's wearing a green and red sleeper and reindeer antlers. It's a baby girl and I forget it's real name, but Hannah has officially christened it Phil. One of our friends who Hannah loves is named Phil so really he should consider it an honor, but it's pretty funny to think of a big macho guy sharing a name with a green and red cabbage patch doll wearing reindeer antlers!