On Moving to Abilene

My dedication to writing a blog seems to be directly related to my computer access. In the years since Michael and I have been together, I have been through more laptops than most people will  go through in their lifetimes; my spiritual aura is in conflict with technology energies. (At least that's what I tell myself, instead that I am woefully and inexcusably forgetful and clumsy.)

So very much has happened in the time between this post and its predecessor, but hopefully this will bridge my way into writing regularly again.

The biggest change of course would be our relocation.

Lubbock was where Michael and I met and fell in love, started our family. We made friends, established connections, became involved with a church family. Michael's family (the Roberts portion of it) was centrally located there. Both he and I were cautious, hesitant to uproot ourselves and our children. The longer we stayed, the more we embedded ourselves, finding more and more reasons to settle in for long term.

When growing up, Michael moved around a lot because of parents' jobs; I, contrarily, moved exactly once in memory. My family and I moved into the house next door. My hometown was close knit, small, with a strong sense of community. I loved the predictability, the consistency. The peers that I started Kindergarten with at five years old were the friends that I graduated High School alongside. It was comforting, and I wanted that life for my children.

Our financial status could hardly be considered strong--every year, through God's blessings, we have been doing progressively better. It has been slow going though. We will not soon forget those times of too little, of struggle, early in our marriage and parenthood where there never seemed to be quite enough to go around. That above all else was what held us in place: we had finally gotten our heads above water, and it was with sheer dread and loathing that we contemplated tossing ourselves back into the deep end to re-establish ourselves elsewhere.

Things in Lubbock for us began unravelling though, little by little.

Michael's job took care of us for many years, but it was barely enough to support a family like ours and was not somewhere we could see Michael working at for the long run. Fifty years from now, we couldn't see him still selling cars, and every year invested more into a career and field unsuited for him was nonsensical.

Gabriel was not making progress in the best PPCD program in town, despite being enrolled for two years. He was at the cusp of being moved into the special education kindergarten, and it was time to try something different.

And I? I was struggling, floundering, depressed and overwhelmed with the reality of raising a diabetic daughter, a severely autistic son, and a toddler. There were friends and support groups, Michael's family, and a frankly incredible church (all of which I will be eternally grateful to for helping us make it this far), but I needed my family.

I needed my sister, who adores my children and makes me laugh, makes me happy, makes me remember who I am and who I was and who I will be; a perfect friend who I couldn't love more and who loves me the same. She understands Emerald because she was Emerald, and she loves my boys just the way they are.

I needed my brother, who is patient and compassionate and amazing--we all joke that he is Mom's favorite, and if he is, not one of us can blame him for it because he is our favorite, too. He reaches Gabriel in a way that few else can; challenges me spiritually and intellectually in way that has made me strong and all but unshakable; and celebrates who every member of my family is as an individual without seeking or wanting to change us.

But most of all, I needed my Mom. I wonder if we ever really get over that--when things are hard and scary and tough, when things are falling apart (which is how my every day feels), your mom is where you can go to fall apart. And, when you're ready, she's the one that can help you put yourself back together.

My Mom is unique though in that she genuinely gets it. She understands what I am going through, doesn't tell me how I could be doing it better or shrugs it off like it doesn't matter. She listens, she makes it better. Sure, she makes fun of me for being whiny and needy, but...she knows that I am so busy taking care of everyone else and everything else, that I need someone to take care of me, too. To bring an extra can of tuna and boiled eggs so I don't have to eat tuna salad like everyone else and make my oatmeal raisin cookies with extra cinnamon. To rub my head when I have stressed myself into a migraine; talk to me about things that matter when I'm ready, and things that don't when I'm not. People say "she has seen me at my worst", but no one sees you more vulnerable than your mother, and she still seems to like me.

Moving to Abilene, we got more than those three: we got my beautiful, caring sister-in-law Julia; my intelligent and funny brother-in-law Jud; and of course, my Daddy, my everyday proof of God's love and miracles. My nephews Grayson and Andrew live here, and they are just as cute as you could ever want. There is a noticeable void where my brother Royce is supposed to be, working as he is in the oil fields in West Texas. Amber, Jarrod, Mom, and I are kind of a set though--a group of kindred spirits brought through the fire together. Our life circumstances have bonded us in a way that makes us inseparable, very good friends as well as family.

It also helps that we are massive nerds on wheels that bond over Doctor Who and jokes about science.

Like I said earlier, many little things conspired to bring us to our new home in Abilene. The final nail in coffin though was Emerald's inability to return to Lubbock Christian.

LCS had been so wonderful to us, and we will be thankful to them for the years they have given us. But being a private school meant that they were not able to have a nurse on campus, and with Emerald having Type I diabetes that necessitates glucose tests and insulin shots, she needs to be at a school that has a trained, registered nurse taking care of her. The only other option is taking her out and homeschooling her, which is an impossibility with our conflicting personalities and shared impatience.

At the end of the school year in May, we began to look for a new life in Abilene. ...but that is enough for tonight. More tomorrow of our adventures in moving.

Goodnight!!

--Andie  

Pity

I am pitied.

Just a statement of fact—people that have heard my name or my story look at me with eyes heavy with knowledge. Their cousin-friend-neighbor-coworker that has an autistic child has relayed horror stories, which combines in their minds with every statistic spouted by the news or pseudoscience fact discovered on the internet to create this nightmarish ideal of my life. Or their own bouts of nearly diabetic numbers, occasional dips into hypoglycemia, or information gleaned from aforementioned sketchy sources such as acquaintances, television, or web articles have given them an insider’s perspective to how it must be to have an insulin-dependent child.

Of course they all mean well. Shared stories and potential ‘cures’ for these inexplicable life complications are their way of reaching out, trying to fill that uncomfortable void between their normal family, normal lives, and my broken one. They don’t know what to say. It is something we can all relate to, in some situation or another—the loss of a family member, an unexpected diagnosis, a senseless tragedy.

Most days, I don’t understand the pity. I have never known another way—I did not have expectations for my children while they were forming in my belly. In my naïve head, it meant that I was less prone to disappointment; my veteran experience has now taught me that it allows me a great deal of flexibility and adaptability that I would otherwise be cut off from. If I have certain ideals in place for whom and what my child will become, the burden falls to me to ensure the future I have mapped out for them. If they deviate, I must then accept it as a failure on either my own part or on theirs. Without the weight of expectation weighing down our relationship, I am free to make allowances to make life for everyone a little easier for the moment.

In practice it sounds a lot lazier than I’d like to think it is. It is not the void absence of effort; it is more of adopting a watcher’s role, permitting them to discover what they want out of life, directing them away from destructive choices but with room to make their own mistakes.

What can I say: I have always been a bit of a hippie.

In either case, most days the pity is baffling to me. I do not look at Emerald and see diabetes; I see an opinionated, strong little girl. Whether derived from my lifelong love of health and dietary literature or from a natural inclination to absorb pertinent information, the counting carbohydrates and covering with insulin became second nature to me. In the hustle and bustle of everyday life there is a chance my feeble and fleeing mind may gloss over bringing along her testing supplies when going out, but my hovering observation of her behavior has granted me a nearly sixth-sense about where her blood sugar is based on the ups and downs of her temperament.

Of course, Gabriel is getting harder to justify away in my mind. When we first started down this road to diagnosis Autism, he was such a small, wonderfully loving, joyous blessing to our family. From his soft, floppy blonde hair to his mousse colored eyes, long snuggles together as he sleeps, and that big belly laugh, he has been a genuine pleasure to be around.

He started getting aggressive, but it was an age-appropriate deviance and one that required the sincerest of apologies (most of which were accepted readily and graciously). The socially-awkward pica slowly but surely resolved itself, outside the occasional teething on a toy or stuffed animal in the privacy of our own home. Meal times became less harrowing with his increased appetite and willingness to try food, and a cocktail of medicine made bedtime considerably less dreadful than it had been in the past.

Why would someone feel sorry for me? I have three undeniably beautiful, unique children, I think to myself.

And then we have a day like today.

When Gabriel turns the movie I have put on for him a half a dozen times, screaming full gale-force in my face as he pummels me with remotes and his tiny fists. Curious Benjamin has discovered bottles of finger paints that Mommy neglected to put away after work, squeezing green into the carpet, purple onto the walls, and orange into his own hair. I have to reassure myself that they are indeed non-toxic because I cannot stop what I am doing to clean him or the house up—Gabriel has gotten into his diaper and smeared feces all over his face and hands and clothes, as well as who knows what else, because he was bored. Juggling the two boys in an attempt to minimize the overall damage, Emerald wails from her room that there is a bug and she can’t clean because there is too much stuff and it is too hard and she is tired; I tell her I will be there as soon as I can and in all huffiness she slams the door so hard that the last remaining picture the boys haven’t removed from my wall and destroyed crashes with an astonishing spray of shattered glass. There is nowhere to contain the boys while I try and remove any of the shards that could cause potential damage—boundaries are a challenge, a dare, more than an actual form of forced obedience.

This all transpiring in the longest hour and a half of my life, I resolve to find a sitter for the monster children so that I can go on a date with my husband, have a full night’s rest. I will settle for a nap, a shower, or twenty solitary minutes to sit on the porch in silence and just cry.

Most of my calls go straight to voicemail. After all, most responsible adults are still at work now, looking forward to getting off so they can go home to their husbands and their sons and daughters, to a nice quiet dinner, tuck-ins and goodnight kisses, and a bedtime they have been looking forward to all day.

Meanwhile I am pushing greasy hair out of my face, wondering how long it has been since I have washed it; I have worn the same flour-dusted sweatpants for three days now because they are the only thing that fit; my nail polish is chipped, my shirt covered in food I never ate. My eyes feel like they have fifty pound weights attached to their lids—sliding lower and lower—knowing that the moment I cave and l let them flicker closed, Gabriel and Benjamin are going to raid the refrigerator and eat an entire pack of cold hot dogs before dropping chilled Powerade into my sleeping arms to open for them.

Part of me—that quiet little voice that used to be reason but has since morphed into something much more sinister and desperate—hopes that if I fall asleep now, I just won’t wake up. If it’s the only way I will get some rest, then please God just let me die in my sleep. Every time the voice starts, guilt at the thought, the hope, of dying coupled with the sadness of leaving Michael fending for himself causes me to jolt myself awake again and again.

Lack of sleep has made me catty.

Nagging thoughts wonder if my phone calls are being ignored, declined. Who would feel capable of watching three admittedly difficult children? If there were fewer of them to watch, perhaps.

Benjamin isn’t so bad on his own—he is neuro-typical, developing more or less on schedule with his peers. But he suffers through separation anxiety, having never been away from his mother for any significant length of time. Perfectly normal and expected, but who would volunteer to hold a screeching, squalling, squirming toddler who wants nothing more than to be with his mother? In the best of scenarios, you are welcoming a tornado into your house to wreak destruction and devastation in its path, hulking his way through your belongings as you chase behind him wondering why his parents haven’t given a sharp smack on his bottom yet.

Emerald could be all right on her own as well; there is the counting of carbs, but with mom and dad’s cell numbers and a working internet connection, it should be more or less manageable. Ah, but the very vernacular of diabetes is overwhelming and confusing and frightening in and of itself—what is a unit of carbs and how does that relate to a unit of insulin? What is the difference between Lantus and Novalog? What do we do if her blood sugar is too high, too low? What IS too high and too low? How will we know to check her? What if there is an emergency…questions build upon questions upon questions, all of which I have the answers to and can answer, but this isn’t their life; this isn’t their struggle. They were being nice, trying to give us a break by volunteering to keep the little red-haired drama queen, and they shouldn’t have to have a full endocrinology lecture just to get through three hours. And we can’t risk leaving anything unanswered because knowledge is what grants mental peace. Without full disclosure of every possible eventuality (or, frequently, even with) fearful eyes follow her around, petrified that they are going to do the wrong thing and accidentally or negligently kill this rambunctious child.

Not to even mention Gabriel. Bless him, he wants to be seen and treated like a normal boy. He likes people best that treat him like he is just any other kid; people that talk to him instead of in front of and about him, people that play with him, engage him, love him. Michael and I have been working the puzzle that is Gabe for four years now; trying to figure out what motivates him, what he likes and dislikes, what makes him happy or sad or angry. Reading his moods is convoluted and misleading at best. Peals of laughter for most children indicate gaiety; with Gabriel, it usually points to hysteria, feelings of being overwhelmed, overstimulated, and on the verge of a massive breakdown. Through years of observation, it has become unconscious behavior to redirect Gabriel’s “tells” for impending aggression, head off major meltdowns, and remove him from unpleasant or unbearable environs. It took years to cultivate that foresight and understanding, and I still get caught blindsided by unexpected and distressing actions.

Thrusting Gabe into a new place with new people is something he can cope with fairly (surprisingly) well. He is prone to minor stress, but taking certain precautions such as wrestling singlets beneath his clothing to deter fecal play and packing DVD’s and snacks that Gabriel is partial to add to a more positive experience for everyone involved.

His presence is exhausting, however. His constant, frenetic, expansive movements are at once overwhelming and emotionally off-putting. Not knowing what he is thinking, especially as he flaps his hands in what could-possibly-be-maybe-if-you-look-at-it-the-right-way hand signs or absolutely nothing at all or his bellowing, repetitive, nonsensical vocalizations, is downright disturbing—how can you give him what he needs if he can’t ask you for it or express himself in any understandable way? Are his basic needs being met? Is he hungry, thirsty, bored, tired, wet, dirty?

Diapers add an entirely new element to the entire atmosphere of chaos. Not one, but TWO children in diapers? Let’s be honest—no one wants to change someone else’s poop. The only reason we do it for our own kids is because of familial affection. We can also sometimes be motivated if there is money involved. But here you go, two ticking time bombs that can choose to take a crap anywhere in your nice clean house at any given moment?

Before kids, my house had this pleasant odor of absolutely nothing, nothing, nothing at all. It smelled like air, like water, like wind—exactly, precisely like nothing at all. It scarcely makes me happy that my entire house smells like one giant Walmart bathroom of cheap cleaner and someone else’s bowel movements.

We are burdened with foresight, Michael and I. I know how this is going to end. We will thank you profusely, trying not to note the sheer relief, exhaustion, and pent-up stress in your eyes. We will sincerely and genuinely offer to clean up after the children, which you will again and again decline, though we can see evidence of our children’s misdeeds in every visible corner, crack, and crevice. Haltingly, we will ask you if there were any problems that arose, then simultaneously blanche in horror and color in humiliation as you describe the completely unacceptable tantrums of Emerald, the extended squawk-a-thon Benjamin indulged in, and the handfuls of smeared yuck Gabriel left on your walls, floors, furniture, and person.

None of these thoughts or hesitations or questions are unfair. I get that. I have all the same thoughts and hesitations and questions. When Dr. Beck told us Emerald could be released from the hospital, I had a panic attack—minor, but the first in recollection in my life—because I didn’t want to take this child home, to be responsible for another thing. I couldn’t do it; it was nuts! We do something wrong, and her organs or life could be compromised…that is not something a parent wants to be encumbered with. Of course, I wanted her home. I missed her. But I wanted my Emerald back, perfect, sweet, healthy Emerald. My heart registered that she was the same girl as she was before, but my mind acknowledged that nothing would ever be the same again.

I am not writing this because I want to be pitied. It is not something I actively seek or avoid—my adopted philosophy is that I have little control over what others will think or feel in regards to me; all I can do is try and live an upright, respectable life and let people feel and think how they will. They do not pity me for something that I have done, but rather what life has handed to me. They are entitled to whatever feelings that the information elicits and it affects me very little either way.

I am writing this because I don’t understand, most days. But when I do…why, that’s when I don’t remember how I do what I do. I forget how to cope. I forget how to survive. When my body is literally and figuratively beaten and bruised and broken, discoloration on my legs and arms and on my heart and mind; when my house is buried under a mountain of items rendered useless and ringing with reverberated shouts that leave me guilt-ridden and full of self-loathing; when my entire life feels in complete shambles, like I have royally screwed up everything up and ruined life for everyone around me….

I write because I need a way to remember. 

--Andie

Benjamin Today

Finishing the series of Weardens Today, this is Benjamin Reilly--the youngest, my baby, his very first post!

Benjamin is...a stinker. Social and adorable, stubborn, and just full of goofiness. He is a big boy with an even bigger personality. Ben is a bit of a nancy-boy because Mom spoils him relentlessly, shamelessly, so that now he is devoted wholly to mom and scared of a lot of the world. He hates baths, swimming, or getting sprayed with the water hose; screams in terror at most shows; and is downright petrified of the car wash. It is just a phase that he is going through, of course, but my heart aches for him when I let him self-soothe, figuring out that he doesn't need mommy to calm himself down. Because of the vast amounts of time that he spends alone with me, he is also adamantly a Mama's boy; both my boys are, but Gabriel is beginning to move away from it. Emerald has always been Daddy's girl, the boys cling to mom; it's just the way things are. Ben is so, so funny though. Whenever we try and leave anywhere, he immediately scans the area for something to grab and take with him. Sometimes it is fine, like a car or his drink, but other times it is a bit ridiculous as he will grab the entire barnyard or the garage door and try to take those along! He worships his big brother and sister, tagging along behind them wherever they go, trying to keep up. Such a funny, goofy boy, his favorite thing to do is to make the world laugh along with him.

Benjamin is 20 months old; his nicknames are Ben, Benji, Banjo, Bingbang, Bangles, Benny, Benjermens, and Cupcake. 

Ben's Favorites: 

Games: 

There really isn't a picture for Buzz Went the Bee, so I just went with this adorable guy. Ben LOVES being tickled, which is good because he is a big pile of ticklish spots. For those of you unfamiliar, you "buzz" your finger around saying "buzz went the bee, and he went around the tree, and he found a little hole and went -buzzzzz!!!" On the buzz, you find a little spot like his collarbone or his knee and you tickle him. Benny thinks that is just the funniest thing in the world. He really is a typical baby--he likes playing games like peek-a-boo and racing cars with you; basically anything that will get you two laughing and playing, he is game for. 

Activities: I wasn't ready for Benjamin's...activeness. I mean, Gabriel has boundless energy and is constantly on the move, but Benjamin is BUSY. Apparently he is just "all boy"--full of movement, curiosity, and trouble. Right now he is going through the climbing phase where he wants to sit on top of everything, scaling desks and tables and anything he can get his hands on. He can get himself in a good amount of trouble without even trying; he doesn't know his own strength so he is known to smack people when trying to be nice, slamming toys around, and generally wreaking havoc. One "trick" we taught him was showing his temper, where he balls up his fists and goes "GRRR!!!". It is darn cute but the effect is rather lost when he can't stop grinning his toothy grin. Our cats, Remy and Oscar, and dog Pepper are his constant friends; he chatters to them, petting them so gently, so sweetly. 

TV Shows: 

None. Ben has much too much to do to stop and stare at the TV. 

The exception is that he kind of digs Mickey Mouse. 

Food: Boy, can this child put food away. He is one humungo kid,the largest of my all ready sizable vikings. Fortunately we are at the age where he more or less still eats what we eat, but he is doing that "throwing food on the floor" thing that is just so annoying. Notably for him, he is a poor boy that cannot handle some of the perennial kids' favorites: McDonald's gives him regrets and pizza upsets his tummy. In Lubbock, everything is relatively close so if everyone is insistent on something he can't handle, he and I can just go next door and get something else. (I don't much care for most fast food; I can never fault my kids for being picky eaters because they came by it naturally!!). Sweets usually go over pretty, and he just loves mac and cheese. It, along with his brother's  recent addiction to pasta, has prompted me to start experimenting with mixing vegetables, meats, and sauces to making interesting variations of traditional pasta dishes. 

Movie: 

Hercules was just added to instant queue so he has been getting into that lately. He will also watch the Toy Story movies and Madagascar: Escape to Africa as long as  you fast forward through the scene with Tsetse, the overly muscled lion. It frightens him unnecessarily. Mickey and the Beanstalk and other "classic" Mickey movies have been added to NIQ as well, and he will usually pay half attention to those. Like I said with the TV shows, Ben just doesn't slow down enough to focus on a show--any that I have mentioned is going to be punctuated with his running off. As I write this, he is dumping the water from my flower vase on the floor while "watching" his movie. 

Books: 

I am sad to say that Banjo is almost completely uninterested in books :( He won't sit with me to read them, and sees the cardboard books as more of a snack than entertainment material. I continue to read aloud to him and his siblings, in the hopes that one day maybe we will stumble upon the key to unlock his love of reading.

Colors: Emerald is pink; Gabriel is green; my Bennyboy is BLUE! He is my little boy blue. Most of his clothes are blue, and whenever we buy him things it is usually blue. The exception is brown, which looks nice with the blue :)

I feel bad for not having quite as much to say about Benjamin. I could go on for pages about Emerald and Gabriel, but the fact is that they are older and their personalities and preferences are becoming more pronounced by the day. Ben isn't interested in figuring out who he is yet because he is still trying to figure out the world around him. And that's normal; it is okay. He doesn't talk or communicate at all, most likely due to peer modeling from his brother. I know he has the capacity to talk and he doesn't seem hard of hearing at all, so I have faith that he will start in time, when he is ready. Even so, I have contacted ECI to get him started on Speech services; a little prompting won't hurt. We do have some struggles with him at this point, mostly that he and Gabe have a switch-off sleep schedule set up so that most nights we just put one child to sleep before the next one wakes up. Michael and I are exhausted. We thought we had moved past this point: Gabriel was starting to sleep more consistently, but like his brother before him, Benjamin is so so reluctant to sleep at night. Even though he is only 20 months old, I don't let him nap and have him on low doses of melatonin and...nothing. Might as well be doing nothing for all the good it does. 

So that completes the Weardens Today posts!! I was hoping that by spacing these out, doing one at a time in three consecutive days that I would get back into the swing of updating. I did! But we don't hardly have anything to talk about! Michael works so much that we don't get much time with him, and the kids and I are limited in what we are able to do without help. I have so many ideas in my head of things to do with the kids, places to take them--swimming, the Science Spectrum and all their exhibits, the Abilene Zoo, Library time and community center classes and playdates with school friends, church friends, and SPAN, plus picnics to watch the airplanes take off, wilderness "treks"....but I couldn't have assembled a more difficult bunch of kids for outings if I had tried. Emerald is fairly well-behaved but takes advantage of the situation if I am frazzled or  distracted; she will run off, play with other kids, and argue, argue, argue. 

Typical conversation: 

Me: Emerald, please stay close to mommy in the store. 

Emerald: I am just dancing over here with my new friend! If I stay with you, I can't see her!

Ugh. Just...stay with mommy; I don't want to look up and realize you are gone :-S

And I have to watch her for signs that her blood sugar is getting too low or too high, be available to do finger pricks and insulin shots, and closely watch the time for snack and meal breaks. 

Gabriel is difficult for obvious reasons. You have to watch closely for signs of agitation or he will have a severe meltdown, run off, start biting himself or you, pinching, screaming....plus he is probably not that interested in what is going on anyway, is being loud and disruptive, or just jumping in place. Now while trying to keep wander-off Emerald and bounding Gabriel, I have this toddler that is just big enough to walk and start participate but needs complete and undivided attention....add that to the fact that all three of them are pushing "too big for me to carry" (and by pushing, I mean I still lug their chunky butts all over the place to the detriment to myself; they are massive--54, 41, 32 lbs which really adds up!) and Emerald's diabetes bag, the boys' diaper bag, snacks, my purse...I feel like a pack mule.

Woah, really got off topic there. Ben Reilly is great. The perfect addition to our rather odd family. He is a blank template, waiting to be written on; it is an adventure to see who they will become! 

--Andie

Gabriel Today

Gabriel Today!

Gabriel is the sweetest, most loving little boy. Despite being autistic, which is often characterized by aversion to physical contact like hugs, Gaby can't get enough love--he covers Mama in kisses, wrestles with Daddy and Pawpaw, and demands that Grandpop hold him constantly. In public, he will hug random women and request that men hold him. He is getting to the age of distancing himself from Mom a bit; he wants me when he needs to be comforted or when he is tired, but during most of the day he would rather spend it with other guys. With seemingly boundless energy and a predisposition for mischief, Gabe can definitely be a handful, and you have to watch him in case he decides to abscond the moment your attention is diverted. Most of his day seems to consist of figuring out ways to subvert my authority, whether that is stuffing the cat in the oven, sneaking food off of my plate, or stealing the TV remote, and his excess of cleverness just aids him in his efforts. The hardest part is that he is still completely non-communicative; unable to speak, sign, or engage in picture exchange, he is limited in his ability to express wants and needs to us. He does not let this hold him back though, and he will figure out a way to get the things that he wants (even if that means ripping the handle right off the fridge). 

Gabriel is 4 years old, and his nicknames are Gabe, Gaby, Gaby-Baby, GooBoo, Goobles, Gablegobbles, and Cookie. 

Gabriel's Favorites

Games: 

Gabe is not great at following rules or attending long enough to play a game, but he does like song "games". For example, he can't get enough "Wheels on the Bus" or "If You're Happy and You Know It". He still requests hand-over-hand to do the signs, but he manipulates your hands, proving that he does indeed know the motions and is paying attention (whether he is looking or not). Besides that, he loves tickle games, wrestling, and fishing games where you match the colors of the fish to the boat. The more active the game, the more likely he is to participate in it, but an excess of stimulation can cause a meltdown pretty quickly--it is kind of a balancing act of "just right" amounts of people, noises, smells, sensations, and time that he can tolerate. 

Activities: Gabriel is out of Preschool Program for Children with Disabilities (PPCD) for the summer. Now, he is mostly engaged in private Speech Therapy where he reads, sings songs, plays games, and generally is prompted to learn and share signs. He is a regular little water duck, swimming and playing in the water hose and taking leisurely and long bubble baths. There is a sensory deprivation element to all of it, where he can float with his ears under the water to muffle all the sounds, close his eyes, and just let the lukewarm water wash over him. It calms him, and as any parent can attest, swimming is one of the best ways to tire out a child. He has a trampoline out back that he jumps on, or just lays on to soak up the sun. Like most toddlers, he won't say no to a ball, bubbles, or balloons. 

TV Show: 

I know, you are so surprised to hear it, but...

VEGGIE TALES.

 

Still totally his thing. Ugh. Luckily I am more or less able to completely tune it out at this point; I wish there was more available on Netflix Instant Queue because he will see a disc, get excited, and accidentally scratch or break it trying to show it to me. He has shifted his interest mildly in that he now prefers Larryboy or Minnesota Cuke episodes over others; they tend to be more action-packed and boy-centric. 

Other than that old standard: 

SuperWhy! is a show on PBS, and no on NIQ, that he finds entertaining--he has always been a fan of watching credits roll, and I think that seeing the words spelled on the show help hold his interest better. If Grandpop is around, Gabriel will happily watch anything, but if it is just Mom and Dad, he becomes picky, bringing us the remote incessantly until we finally accidentally stumble on whatever he feels like watching. 

Food: Super recent development is that Gaby is all about the pasta. Before, whenever we had (for example) spaghetti, I would spoon the sauce onto a piece of toast and sprinkle it with cheese so it resembles pizza enough for him to eat. The last time I tried that, he started stealing food off of Emerald's plate; the same thing happened when I made my barbecue chicken mac and cheese, so I decided to start offering him what we have. 

Now he happily eats pasta with the rest of the family. I at least offer what I made for dinner, but give him something different if he won't eat. Especially at other people's houses, he will only eat things like peanut butter crackers or nuts or peanut butter pretzels. The "dry" foods that he used to be so focused on. Of course, he will still get down in a cupcake or other sweets, it's just the main meal he is disagreeable about.

Back at home, he will eat WHOLE fruits and vegetables. Hand him apple slices and he ignores them; give him a full apple and he will eat it down to the core. Bell peppers, all varieties of fruit--anything that he can hold comfortably in his hand, I think is his motivation. Even better if it keeps his hand dry while he is eating it. Exceptions include oranges which have to be peeled, and any fruit cup, particularly mandarin oranges. 

Movie: 

 

His two favorites right now are The Princess and the Frog and Alice in Wonderland. No telling why he latched on to those two. Last year, he would watch "Toy Story" again and again, but this year he shows minimal interest before moving on. Other movies that he likes are Hercules and Madagascar 2: Escape to Africa. We are rather limited in what he will and will not watch, which means a pretty standard rotation of about 10 shows and movies.  

Song: As aforementioned, If You're Happy and You Know It and Wheels on the Bus go over really well with Gabe. Other than that, he likes jazz music (probably why he likes "Princess and the Frog"), things heavy with trumpet or piano, mostly. He has a strong dislike for country music and "popular" music; like his Daddy, he prefers things that are a little more antique--Elton John, Journey, etc. One of the few time I caught him trying to sing was to the "Phantom of the Opera" soundtrack from the Gerard Butler from a few years back. Michael thought that was just the neatest thing. Children's church songs are pretty standard for him; I think he prefers his music as unobtrusive as possible. 

Books: 

In Speech, they read the Little Critter books by Mercer Mayer; he really likes them and responds to them. Maybe it is because Ms Emily is the one reading them to him, but he requests and more or less listens when she reads to him. 

It is difficult to realize that he does enjoy being read to because he doesn't respond like most children do. Emerald will bring you a book, sit next to you and "help" you read, answer questions and point out things in the pictures, and generally devote her whole attention toward the story. Gabriel on the other hand will not sit beside you. Sometimes, he won't even sit in the same room with you--he will lay down in the hall, or play in the adjoining room. You can't tell that he is paying attention at all. But if you watch, he gets uncharacteristically quiet whenever someone reads aloud. His motions become less pronounced and more sedate; he walks around aimlessly rather than jumping up in down in place or smacking himself. And most distinctly, he doesn't request shows, or to go inside if we are outside; he just seems all around more peaceful. 

The reason I started looking for these signs is because I was reading aloud to the children anyway but didn't know if they were getting anything out of it or if I was wasting my breath...but then one day I was sitting quietly and Gabriel brought me the book I had been reading to them ("One Hundred Years of Solitude" by Gabriel Garcia Marquez). He didn't look me in the eye, he just carried it over and dropped it in my lap, then started his soundless haunt of the area near where I was sitting. 

That kind of crude communication is not that uncommon with Gaby, but you have to make sure that you keep your eyes open because being dismissive that it might be random or he is just being a pest can make you miss so much of who he is.

Colors: I color code the children. I know, totally weird. But it helps me keep everything organized if they all have blatantly distinct possessions; I always know what belongs to who because of the color. Emerald was easy--she is my only girl, and she loves pink above all other colors. So she is pink. 

Gabriel and Benjamin, I went with initials. Gabriel is green; Benjamin is blue. 

Which basically means that at dinner time, Gabe will always have a green cup, fork, and plate and Benjamin's dishes will all be blue. It is how I keep it straight in my head. 

Gabe responds well to the green. The other color he seems drawn to is that bright neon orange.

Gabriel is an amazing kid. It must be so hard for him to go through life feeling like the world is overwhelming and confusing and even painful, and worse yet to be completely unable to control any of it or tell anyone how he is feeling. Sometimes this manifests negatively, where he will have accidents or do harm to himself or others; but for the most part, he is a sunny, serious little boy who is making the best of a difficult situation. He cleverly figures out ways to get what he wants, or independently discovers new methods of helping himself to things he needs. Developmentally, he is not where we want him to  be, but he works so hard trying to catch up and puzzle all of these difficult tasks out. Who knows who he will become or what he will accomplish, but Michael and I know that we are proud of him and know he is capable of so much, growing every day into someone incredible. 

--Andie

Emerald Today

To finish the series of posts I started, oh....six months ago, this is Emerald today!!

Emerald has a flair for the dramatic. Everything she does is either the best in the whole wide world or the worst that has ever happened--there is no medium ground with anything. Luckily for the most part, she is just the happiest, sweetest little girl. Like most girls, she is wanting to grow up too fast--she is the little helper, always eager to help cook, clean, or run errands. There is no amount of individual attention that is enough, because she will continue to bask being the center of attention--a social little butterfly. School can be a struggle for her because of her flair for extremes and her sociability; she can't stop chattering, and is not shy to share her opinion!! God made her tough and brave; everyone asks me how she is handling her new diagnosis. She will proudly tell anyone, "I am diabetic now!" Finger pricks and insulin shots do no faze her in the slightest; she will frequently remind us what she needs. At first she was grouchy about limiting her sugars, but she has adapted so quickly and wonderfully, Michael and I just are so proud and amazed by her.

Emerald is 5 (and 3/4) years old; her nicknames are Em, Emmy, Emmie Lou, Pineapple, and Booger Red.

Emerald's Favorites:

Games:


Like her Daddy (and let's be honest, her mama), Emerald is a big fan of video games. I try and limit how much she plays her Nintendo DS or on the iPad, because even that sentence is ridiculous to me (what is a five year old doing with these devices?!) so that she can cultivate other interests, but she plays as much as I will allow. Her current favorite games are My Little Pony Pinkie Pies's Party for the DS and Smurf Village on the iPad.
She is exceedingly clever: she can figure out games like Angry Birds or Cut the Rope before I can and will patiently explain how to solve the puzzle, which just cracks me up. When we had a kinect, she loved playing that as well, but it is such a crude technology in its infancy, requiring much too great an area to move around, so inexact in its reading, and barely registering a girl as small as Emerald.
Another game she likes to play is Star Wars: The Old Republic, the previously mentioned PC MMORPG that Michael is a big fan of. I play it as well, and will let Emerald sit next to me; she designs and names the character, and I control movement as she picks conversation decisions and attacks. It is not the traditional "mother/daughter" activity, but she and I like it and appreciate having something to share :)

Activities: Emerald is still very much a girly-girl at heart. Playing dress-up and tea parties, holding concerts for her stuffed animals, picnics outside...generally, anything you suggest she is game for, and she adores playing pretend. She is so social that it is hard for her that her brothers are more independent; Gabriel is just generally intimidated by anyone trying to play alongside him, and Benjamin is more interested in slamming the toy around or smacking you with it than actually following rules. Hopefully I can organize more playdates for her during this summer; I still very much want to get her involved in a community center class, my only holdup being that Benjamin is too young to join anything and Gabriel is not technically "Welcome" in those classes (a fact that saddens me, despite my understanding).

TV Shows:
                

Recently, Emerald has picked up the Disney Junior shows that have been added on Netflix Instant Queue. Her favorite is JoJo's Circus and The Powerpuff Girls. She will watch whatever you put on, but she is all about girl empowerment shows; she will tell you her favorite superhero is Supergirl (Kara Kent) and loves to watch any show about comic books. The more Daddy likes it, the more Emerald is going to like it and request it--Avengers, Justice League, Batman, Star Wars, etc. Just now getting into things that are not animated, she loves any show that has horses or dogs or really any animal.

Food: If you ask her, she will tell you all about how she loves cupcakes and cakes, and all manner of "girly" foods. Dainty little pastries for her tea party, anything that looks "fancy". Realistically, she loves lasagna, pickles, all fruits (especially "juicy red apples"). She is agreeable when it comes to vegetables: she has never dug the starchy veggies like corn, peas, or potatoes (that aren't covered in butter and cheese), but fresh veggies that she can dip in ranch are a huge hit and she loves salads. Other cooked vegetables like broccoli and green beans she will tolerate. Like most kids, she is all about the hot dogs, pepperoni pizza, chicken nuggets...all that junk food that isn't all that good for you, but she is agreeable about eating what she needs to.

Movie:
  

If you ask her, it is alllll about the "girly" movies. Maybe she is at the age of real gender identification because she is motivated by what girls like and watch and read and do. Barbie movies are her favorite because her friend Brooklyn gave them to her--The Island Princess and The Diamond Castle are like chocolate to her; such a rare and special treat. The more girly, the better.

Songs: Whenever we get into the car, Emerald immediately requests classical music. I think she finds it soothing because she will just lay back and listen in bliss to what she considers "pretty princess music". In the absence of that, sound tracks from her movies, Disney songs, and seasonal music are always a hit. If it is near a holiday--any holiday--expect her to be asking for "Valentine's music" or "Christmas music".

Books:
Emerald's favorite books tend to be the ones that are about herself: scrapbooks that she had gotten from school or that I had made, "To My Daughter With Love" which is a memory book filled with facts about her; things of that nature. If it has a picture of her in it, especially as a baby, she is hooked and looks at them again and again.
As for "real" literature, she likes (once again) anything girly. She is all ready a strong reader: she can figure out most simple books on her own, and she loves to read. One of her favorite things is to look at the Star Wars book about spaceships or to go to the Comic shop and pick out her own comic. There is no telling what she will pick out, as last time she chose "Uncanny X-Force", but she always reads and enjoys it so it is a special treat for her.

Color: Of course she still likes pink the best, but she is partial to purple as well. Really she says she likes all the colors of the rainbow except "black and white and gray, because people who like those colors must be grown-up and sad". 

Flower: Daisies, all the colors of daisies, because "they smell awfully pretty".

Emerald is a tough, bright little girl. She is always the top of her class, academically, even if she is perpetually in trouble, and she excels at everything she tries. You can't help but see the world as more fun and magical and beautiful when you are with her because that is how she sees it. Her personality is so effortless easy going and loving, she can make friends with anyone, but her closest bonds have been with her great grandmothers--Grannymom, Gigi, and Grandma Pat. Anyone that has met her will tell you: she is beautiful, inside and out; growing to be a special little girl! 

--Andie