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://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.
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.