Monday, April 29, 2013

He's a Super Hero, What's There to Cure?

DISCLAIMER: I'm naturally a long winded person, just ask my husband ;-). I hope I don't lose you with the length of this post because its something I feel strongly about. I'd love to hear your thoughts. Please comment below!

     I read a poem last night from a blog that I've seen a few times but have yet to read much of. But if this poem is any reflection, I'm going to have to set aside some time to wander around their site! The site is called "Flappiness Is" and her post, "If You were Cured Tomorrow" moved me!

     I have seen more times than I can count, people or organizations raising money for a CURE. Back in the day, I know I donated a dollar or two at the check out for that exact purpose; to cure autism. Now that statement puts my stomach in knots, I can't help but feel overcome with uneasiness. What are they suggesting needs curing, exactly? Xander doesn't see a damn thing wrong with himself and I intend on fostering that thought for as long as I possibly can. Because that pure and simple thought needs to become the core of all autism awareness:
There's nothing wrong with having Autism!

      Like the poem in the link above, if Xander were to be cured tomorrow, he would be a completely different kid. I can't wait to see the man he develops into. I get anxious, just like anyone else, when I worry about what the future holds for him because of the challenges he might face. But given the chance, I wouldn't take it away. I'd give him all the help the world has to offer, to help him meet his highest potential not conform to the world's idea of what normal is. I get jealous of others, I'm sure we could all admit to that. When people post on facebook about the cute back and forth they had with their toddler or school age kid, I can't help but long for those same cute moments. That's not his fault, he's delayed in his speech because we haven't figured out exactly how his brain connects verbal language with his desire to communicate his thoughts or needs. Sometimes his senses overwhelm him so much that figuring out a new word is just too much for him. Whatever the reason, we aren't there yet. But we will be and in the mean time I'll take the sweet smile and rough head bonk as an "I love you, Mom."

     I respect that there are grey areas in this conversation for parents of severely autistic children, who may never find a voice in this world or live life to its fullest because of limitations but even people who were originally written off are coming to the front lines and fighting for disabled rights. Carly Fleischmann is a girl who, up until a few years ago, no one thought was even able to think clearly. Now she's a teenage advocate for individuals who are severely disabled.

     But in our case, and so many like ours, I don't want to cure what isn't a disease. I remember back to before we were even parents, look at family friends with an autistic child and pitying them. I can't express how much that thought now embarrasses me. Why did I pity them, their son had done so much and is an adorable loving kid. Healthy, smart, funny and active; everything a parent hopes for. Why pity them?

     Yesterday, my husband gave me the gift of an afternoon to myself and I ran a few minor errands. While picking up mother's day cards at a hallmark store, I got into a conversation with the cashier woman. Somehow we got around to Xander and I said he was autistic and instantly the "sorry" came out. I told her there was no need and it was something to apologize for. She apologized for apologizing... then we had a lovely conversation about her experience with the spectrum and about Xander. I love chances like that to change people's way of viewing this as a trauma. Something that they should pray my son outgrows or is cured from.
flying lessons

     Outgrowing "it" or recovering strikes the same nerve as the idea of a "cure." I think a lot of people assume the kids who have excelled with early intervention and proper therapy have simply grown out being autistic. No, they have just done what the programs are designed to teach them, learn how to adapt their needs in a healthy way to match typical behavior. My sister-in-law texted me last week asking about this, she was debating a co-worker. I'm happy to say she won the debate and hopefully righted some misconceptions.

even super heroes need snacks
     I know I've gone off on quite a few tangents and probably lost quite a few of you with the lengthiness of this post but in the end my point was to encourage the idea that these kids (and adults) are amazing just the way they are. No cure needed. Therapy and education isn't design to change them, just unlock what is already there. My son has the all the makings of a wonderful man inside him, as do all children. Fostering kindness, acceptance, love and self esteem is the best thing we can do for any child; challenged or not!

     I recently made a super hero cape for my little man, much like the people over at make for special needs kids. He's been having fun running around playing while wearing it. He is my little super hero. He hasn't battled any cancer or blood disorder, those kids are amazing little heroes too, but he is just my little champion of happiness. Even when something as important as talking to his parents is out of his reach right now, he just finds a way around it and keeps a bright smile. He seems to see no challenge he can't overcome, so why should I? So to my little hero I say this: 
Thank you for your optimism. 
It gives me faith and shows me your love. 
I wouldn't change you for the world!

UPDATE: Thanks to our friends, Janee' and Gabe over at Souls Never Wrinkle, Xander is now sporting his very own personalized TinySuperHeroes original cape!
Thanks Guys!!

Wednesday, April 24, 2013

All You Need is Love

     One of the more fascinating sides of autism, for me, is the person's ability to love. I think its incredibly unfair for the myth, that autistics can't connect emotionally, even exists. Xander loves a lot of things... people too. Its true that forming relationships is challenging for people with autism but the complete lack of ability is completely absurd!

     Like I said, Xander loves tons of stuff! He forms some of the most intense relationships with his things that I've ever seen. Like anyone else, he goes through phases. Originally, he loved Mickey Mouse. He has a doll we dubbed "Bad Advice Mickey" (picture in the link: tell me those eyes don't look shady, like he's up to no good.) Xander crawled for Mickey and later took his first steps when Mickey was dangled just a few feet away. Then poor "Bad Advice Mickey" got tossed aside when he discovered his love of rubber toys, specifically elephants. He worked for weeks to attempt to say "elephant," linking the idea that a soft elephant was the same as a realistic photo of one (which is a big step in comprehension when you have delays.) Giraffes and tigers came and went, currently we are on dinosaurs. Xander would happily "read" any book given to him if it had pictures of dinosaurs. Something about the giant brightly colored lizards thrills him like nothing else and he will take all he can get.

     A few months back, we made our first trip to the Carnegie Museum of Natural History downtown. Xander was in love. The look on his face when he saw the giant painting on the walls of prehistoric time was just priceless. Since then we have been one other time, when we started our "Great Dinosaur Hunt," an attempt to take a picture with all of the dinosaur statues in western PA. On that second trip, Alex bought him a small green plastic sauropod, which he hasn't let out of his sight since now weeks later.

who needs hands when you have a dinosaur and a jeep!
     To say Xander loves this toy is an understatement. They are something very important to him. He becomes so attached that he can't put them down and when he's in love with two toys that day, he's rather not use his hands than give up holding them. He feels so intensely for them that if something is changed or they are damaged, he goes into a rage. I recently made the mistake of removing his giraffe's horns and ears, because his chewing on them had damaged them, making them a choking risk. I have never regretted a simple action so much. 

     Xander loves us, his parents, our family and even a few select friends he's become very close to. Relationships with people are challenging for many people, myself included. So I hardly expect them to be easy for him. But he shows the ability to care deeply for something he gains joy from. Why does that need to be a bad thing? Sure, that week when he fell in love with the half full plastic gallon of water was a little weird but it filled a sensory need and made him happy. Friends make you happy, if they don't then they aren't really your friends. Who cares if they are plastic and can't talk back, sometimes no talking back is a good thing. 

Tuesday, April 23, 2013

A Bad Case of The What If's

     I'm sorry to divert from my normal cheery, count your blessings mentality but after the heavy questions put on my mind this evening, I hardly have it in me to be upbeat.

     Alex and I have been attending a financial planning class at our church for the past few weeks. The first few lessons were about budgeting, saving and wise spending. All of which I'm more than happy to knuckle down and learn about to provide a better life for our family. But now is when the class starts shifting gears and beginnings focusing on the future.

     The number one thing any doctor will tell you about autism, besides every case is different, is that you can never tell where a kids going to be in adulthood. We are meant to look at this with our "glass half full" glasses and never set a limit on their potential, which I completely agree with. But in the same hand, because no one knows where they will be come adulthood, we have to plan for best and worst case. For some, worst case is money for a group home, medical and living expenses for the rest of their lives, and someone to care for them after they die. Best case, college (maybe a lot of it if they Really love their chosen topic of study) maybe some help with living expenses if they have a job but it doesn't cover everything and maybe some medical costs, but nothing close to the costs of long term medical care.

     How do you wrap your brain around two extremes? Yea, Xander's doctors and therapists all expect him to read, write and thrive in an educational setting once he gets used to it, despite being moderately autistic. But still the planning needs to be done. If something happens to us, things need to be taken care of. Even if we are still around, we need to start saving properly now, but pinching pennies and clipping coupons allow us to maintain life now life some many others in this economy and saving is always pushed to the back burner.

     When Xander was born, we pained over which of our siblings we'd choose to raise him if it wasn't one of us and our parents were too old. We debated each family member and after a while made a chose. Fast forward, nearly three years later and that will hardly makes sense. We have a letter written up in case of our death in a drawer in our kitchen. Xander likes playing with the open/close game with that drawer and every time I walk by and close it I get a glimpse of the yellow legal paper we wrote it on and my stomach twists. How do I trust someone else with not only the challenge of raising my baby, but also the challenges of his special needs? Our families love him and they would do right by him but just trusting someone to fight as hard as you have fought as his advocate is a difficult thing. Pushing it under the rug and saying "I better not die," is a decision as parents we can't risk, there's no knowing what tomorrow holds, and we owe it to them to be prepared. 

Brighter Than The Stars in The Sky

     Xander is closing in on three fast. We have recently wrapped up his year review with Early Intervention and are waiting for his upcoming review for Wraparound services. I also just sent in the permission form for the preschool evaluating team to come out to our house, so all in all, the next few month will be filled with reviews.

     As I've said before, I hate them. I should clarify though, its more of a love/hate relationship. I like knowing where we stand by their standards and seeing his growth from the previous testing but the anxiety that comes with the whole process I could do without.

     He has truly become a completely different child from the one I lived with last year. When we started sessions, he hated books and would scream at the first sign that you wanted him to sit and read one with you. Now he Loves sitting on the kitchen floor, paging through one of his two dozen books, happily talking to himself about the content. A year ago, he wasn't even talking to himself. He's babble a little but nothing like the nearly constant stream of sounds that come out of his mouth now. While he's had challenges learning "real" words can be used to communicate, he's learned to label like a wiz! I still remember the night we were looking through his communication book together and he just started blurting out the names of the animals on the zoo page. "Giraffe," "whale," "gorilla," not easy words by any means, but they were the first. I nearly cried, I couldn't have been more proud!

     Besides his behaviors, most of his issues are centered around his lack of communication skills. Despite loving to chatter, he gets increasingly mad when we aren't psychic and can't anticipate his every want and he's forced to either try to convey it to us or do it himself. More often than not, he choices the latter. He has Incredible problem solving skills, annoyingly good. understanding that he needs to ask for things seems stupid to him when he sees himself as completely capable of doing it by himself, whether he truly is or not. Safety isn't a factor for him, he'd crawl across burning coals if there was a bag of cheerios at the other side. He's also just too clever to be tricked into eating healthier. Doctors think they are uncovering a gold mine of knowledge when they suggest hiding vitamins or veggies in his sandwiches or drinks. Umm, like I haven't thought of that before?! Thanks for the vote of confidence, nope tried it ages ago and big surprise, it didn't work! He will pick out the undesirable item or just give up on the meal altogether.

     Xander has made so much progress in a little over a years time that I can't wait to see what the next year hold. I'm giddy at the possibility of holding a conversation with my son, no matter how small. Heck I'd settle for "Mommy?" someday. I know its in there, he's brilliant. And no that's not just my mom pride saying he's brainy, he truly is. With such limited communication, his scores for intelligence are in normal range, so when they can actually talk to him and ask him questions I'm sure it will reveal a much higher score. And really even if it doesn't show up on some test as a score number, he's brilliant. It's undeniable five minutes after meeting him. I truly can't wait to see what the next few years holds for us, challenges yes but the new skills and talents revealed with make them all worth it!

Friday, April 19, 2013

Common Ground

     I was asked a few weeks back, by a wonderful organization, Parent To Parent of Pennsylvania , if I'd be willing to be paired up with a new family as the more "experienced" ones. At first, I was surprised they weren't calling to get another status update on my own calls to my more experienced parents, which I may have not been exactly "religious" in my consistence with. I accepted despite not really feeling like I would be able to help at all. I don't feel more experienced. Its been a little over a year since we were told to seek out speech therapy, it feels like longer but hardly enough to be able to give advice of any kind.

     Anyways, long story short, we got in touch and she's a wonderful woman with a sweet family and little man with PDD-Nos. He's younger than Xander but other than that there's not much different. We had a lot to relate on. I love talking to other parents of special needs kids and getting to connect on that same level. Yea, parents of neurotypical kids are exhausted, worn out, feed up and overwhelmed, just like us, but for whatever reason there's not a 100% connection there. We aren't more important or trying to make a bigger deal out of our situation but it's a fact that I think nearly every special needs parent could agree with.

     Now that being said, I want to make it clear that I'm not trying to promote some weird superiority complex, and I don't feel that somehow Xander's disability entitles me to complain more than the average parent. Quite the opposite, most of the time I don't say what I'm thinking because I'm afraid of my meanings being misunderstood, because I've made that mistake before. That's why its so helpful to have someone in your shoes to talk to, and I think programs like Parent to Parent are incredibly useful in that case. Advice and service ideas are wonderful but really just the common knowledge that someone else is going through the same thing, day in and day out, makes the program worth wild.

     Being a special needs parent is hard. Being a parent, in general, is hard. But sharing the experience is probably one of the easiest ways to make it a little easier. Kids are always going to be scratching at our last nerve and making us want to pull out our own hair but we wouldn't trade them for the world; challenges or not. And being a parent doesn't come without its perks. For example this evening, I got the most amazing deep tissue back massage courtesy of Xander and his Mickey Mouse airplane... I'm sure I will be feeling that in the morning though.

Thursday, April 18, 2013

The First of the Goodbyes

     Its hard to say goodbye to the people that have helped you connect with your child, people who have helped him come out of his shell and taught him so much. But sadly, we are coming up fast on that time. When Xander turns three this summer, he will leave early intervention and move the the intermediate unit.

     Its truly is a bittersweet transition; wonderful to see him growing and moving on the the next program, eager to see what he will learn and achieve next but to have to leave all the therapists and support staff behind is difficult. Though this first goodbye has nothing to do with us aging out of the program, but rather a little one of the way!!
I couldn't find the one picture
I have of them together so a picture
at the dinner table will have to do.

     "Jessie" (a nickname for internet privacy sake) is our service coordinator and one of the first people we met in this whole process. We were still scared out of our minds and trying to digest all the information that was coming from all sides. She helped guide us in the right direction, always with a supportive word and kind suggestion. She modestly refers to herself as "a paper pusher," when in reality she's the first face we see in this journey of services and honestly an under-appreciated part of the process. She set the tune really. By coming in our home, upbeat and encouraging, we came to the "this isn't a death sentence" mentality much quicker than most. She's also the first to notice Xander's sensory needs, stuff we thought was just "Xander being Xander." Behaviors doctors never paid attention to, we now had a name for. She was willing to sit and listen to silly stories between paper signings, make small talk and be a welcomed connection with the adult world, like all of his therapists have now become. For those reasons, she will be sorely missed, though I have no doubt she will be an incredible mom!

     There will be more goodbyes in the coming months, and those won't be easy chances for Xander. We have taken for granted the relationships we've built with this staff. We are truly blessed to have such caring people in our lives who want nothing more but to help our son, some are not so lucky.

Wednesday, April 17, 2013

Stuffy Days are Here Again

     Allergy season is a special kind of hell for most, but its a particularly unpleasant event in our home. My husband and I have suffered with clogged sinuses, running nose, sore throat and itchy eyes since early childhood and have sadly passed this on to Xander. But unfortunately for him it doesn't just effect is sense of smell or taste, but all of his sense. Whenever he's not at 100% his sensory seeking amps up, causing him to stim constantly and seek out the input by any means necessary. With his nose and sinuses thoroughly stuffed, his ears and balance are severely affected, he's easily frustrated when his normally good gross and fine motor skills are less than par. His speech is also affected, generally its always set on loud, but when he's all stuffed up, he somehow cranks the volume to 13 and get's even louder.

      There is one upside though, the cuddles! When my little man is having a "sensory off day" be gets very clingy. He begs to be picked up, held, squeezed and rocked. He will glide his hand very softly across my arms, feeling the texture of my skin and the fine hairs. It seems to help him reset. Normally, he has a lot of trouble with being gentle or using less aggressive force, but when his senses are off he wants you to gentle rub his arms, belly and legs. He craves it. So between the fits of anger and annoyance, the bullying out of boredom and discomfort is a silver lining, he gets a chance to stop and feel the softer side of life, rather than rough play all the time, so all in all not the worst side effect.

Sunday, April 14, 2013

DIY Awareness Shirts

     I've never been able to find an awareness shirt that didn't feel like something my grandmother would like, not that I don't love my grandmother's fashion >>wink<<. So after seeing a really awesome fundraising campaign done by Sevenly for the start of Autism Awareness Month I've been pining over their truly trendy looking tees. Not being exactly what I'd call flush with cash, I wasn't able to justify $50+ on two tee shirts for us. The campaign came and went, and I thought my chance was gone. Then I started thinking, perhaps making a design, using freezer paper stencils (a technique that I'm proud to say I've learned from the wonders of Pinterest) and some fabric paper could get me just as sweet a shirt.

So here it is! My first tutorial, my diy awareness shirt!

What you'll need:
desired design (printed exactly as you want it on the shirt)
freezer paper
felt tip marker or pencil
exacto blade
cutting surface
fabric paint
scrap cardboard
helpful dinosaurs optional

1. Lay your freezer paper over your print out of the design. We don't have a printer so I very gently used a felt tip marker to copy off the computer screen. My husband, the computer tech, strongly discourages this but didn't know I did it until he came home and saw the pictures.

2. I suggest cleaning up the lines of your design before cutting. Practice a little with the blade if you are new to it and take it SLOW! Its a pain and there's nothing worse than messing up at the end.

3. Warm iron. Place freezer paper on your shirt with the cardboard inside, between the two layers of fabric. Use the iron to stick the paper into place. Take more time, than less. You want to be able to have a good clean stencil.

4. After the paper is back to room temperature, apply paint. VERY THIN LAYERS! We learned this the hard way, freezer paper is just like any other paper, it doesn't like to get wet. So by using a minor amount of paint, you don't risk bleeding or peeling.

5. Let dry over night.

6. Peel back the paper to reveal you lovely new shirt! 

Helpful hint:
when your design has letters with holes like A,O,B,D etc. don't cut the center completely out, you can cut it after you run the iron on it once so that the center is in the right place but not fully sealed down.

Alex working on his own shirt!

Let me know what you think!
Feel free to ask questions or share your own shirts in the comments below!

Additional projects we've made since making this tutorial:

and of course, autism awareness doesn't have to be the only use!
A logo from one of my husband's and my favorite video games.

Thursday, April 11, 2013

The Diagnosis Dilemma

UPDATE: since this post, his diagnosis has changed from PDD-Nos to Autism from his developmental pediatrician but we are still waiting for the wraparound evaluation.

     Something happened at our year meeting with Early Intervention this past week that still has my head spinning. Our case worker brought out the supervisor for the Intermediate Unit since Xander will be turning three this summer and moving to the I.U. and that means pre-school.
     We are no stranger to evaluations anymore and while they still make me anxious at times, this one I thought would be a simple review and update of paperwork. But it turns out, this one is one that's raised a few weird points of interest.
     For the first days of researching what exactly PDD-Nos was, most of what we found was confusing and conflicting. I've since tried to make the best sense of a rather confusing, poorly described style. For those you who don't know exact what Nos is, don't bother googling it that will only get you running in circles. Here's the way I've come to understand it.

There's PDD, Pervasive Developmental Disorders. Under that umbrella are Classic Autism, Asperger's Syndrome and Not Otherwise Specified. Or as I like to refer to it as "Column A," "Column B" and "Everyone Else." Nos is sometimes referred to Atypical Autism because they give this diagnosis to people who are either very young, have some but not all characteristics of Column A or B, or they are not able to communicate well enough to get a good idea of their areas of delay. (Please note that I'm nothing more than a parent in this systems and this is just my understanding of the why things are worked out. I do not claim this is 100% correct, but its the best of my understanding after much research.)

     For some reason, that description isn't something easy to find online. Its all put in much more confusing terms and your head is spinning by the end. The biggest question I had was whether or not it was Autism. And I know I'm not alone in this. In the year or so that I've been surfing autism support facebook groups and forums, its a reoccurring question. Then someone comments in a belittling tone, asking if it really matters what they call it, that the diagnosis doesn't change who the kid is. These comments make my blood boil now. In the beginning they made me feel like sh*t, like I was a bad mom for want a clear idea of what it was and was not. I didn't love my son less, I just needed clarity. Now I get mad because more than likely this is a parent with a clear class of Column A or B and they have never had to worried how to define what's going  with their kid. I know we all have hunted for accounts of kids like our child and tried to compare to get a clearer picture but with a diagnosis that is basically the catch all of Autism, that's nearly impossible to do. Questioning Nos status of being Autism or not doesn't make you a bad parent or love your kid less and people need to stop acting like that's the case. We are all concerned about our kids, we want to know what the future hold and even to be told what's wrong can't be "specified" is upsetting.

    So back to my reason for even bringing this up. During the discussion we had about pre-school and discussing the increase in his behaviors and traits over the last year, things we are now noticing with a more educated eye, they feel he would thrill in a specific autism based classroom. There's one catch, they don't consider Nos, Autism. This seems like a ridiculous cause of nitpicking over details. After the meeting, Xander's BSC (Behavioral Specialist Consultant) stuck around to discuss this because she's the only one that goes with us to the psychologist who can give or change his diagnosis. She feels that its not only in his best interest but also a better fit now to change him to Column A and I don't disagree but for there to even be a problem with Nos not being "good enough" seems ridiculous. Nos parents don't go through anything less difficult than Column A parents, and the children have a lot of the same challenges, but to suggest a change simply for services sake makes me question the latest 1 out 55 percentages of children with autism. I know funding and resources come into play and I'm not saying every kid should be put into the class at the parents request, but a case by case bases regardless of formal label makes sense, over cutting a child's chances for increased help because they happen to not have fine motor issues or might not have issues with eye contact as bad as most seems cruel.

     We will see what the psychologist has to say and what effects the new classifications for ASD in the latest evaluation criteria change coming this May might have on our case. I was originally worried that getting rid of Nos and Asperger's would be a huge problem for us, but now I'm thrilled they seem to be doing away with a flawed system and creating a more even playing field.


Monday, April 8, 2013

Its Beginning to Look A Lot Like Springtime!


     Well I'd hate to jinx it but it seems the nice weather may finally be here. Of course, just in time for me to get sick but I'm sure that was Mother Nature's evil plan all along. Sunday, we were lucky enough to get a beautifully sunny afternoon in the 70's. Windy as always out here on our hill top but with lovely blue skies dotted with velvety soft clouds, not even a cool wind could make us stay inside. Xander was happy to be free out in the fresh air with the birds and even more pleased that I didn't force him to wear pants or shoes. I brought a blanket and pillow out from the living room and lounged out on our front lawn while Xander played on the front porch with his trucks. Alex fired up the grill, seasoned his cast iron pan my mother gave him years ago and made steaks for dinner. All in all, it was a lovely spring afternoon.

     We are slowly getting used to the idea that winter lingers longer in the hills/mountains than on the coast and I do find myself missing the salt air but we have made this new area our home and it has its own unique beauty. With the warmer weather comes playground trips, play dates and exploring outside, all of Xander's favorite things. After all, he takes that "summer baby" title to an all time high and tries to out down himself each year. I'm sure there will be more to report in the future but for now, I'll settle with one lovely afternoon with my guys.

Friday, April 5, 2013

Those Who Wander Aren't Always Lost, Sometimes They're Toddlers

    Well my greatest fear happened today and it, quite honestly, was worse than I had imagined. Long story short, Xander walked out of the front door while I was bringing the trash cans in.

     I came in the front door and even looked around as I came in and didn't see him. I called his name when I got in and didn't hear anything. I checked the kitchen before panicking, then ran upstairs expecting him to be belly flopping on my bed. He wasn't hiding in his room or playing in the toilet. At this point, I'm freaking out as I nearly throw myself down the stairs because my legs aren't working right and throw open the front door. Outside a guest of my neighbor yells out to me if this is my kid?! I was hardly able to do more than nod as I ran up to her and grabbed Xander, thanking her as he flailed about and screamed at the top of his lungs. She seemed pissed and disapproving of me and I didn't have a chance to explain, though I doubt it would have done any good.
this is the view from our porch.
That's how close the cars spread by with the decorative "fence." 

     When I got back in the house I broke down. It was beyond horrifying to think of what could have happened if that woman hadn't had been in her car waiting. He would have just walked clear out into the road and I could have come out to something that I don't even want to begin to imagine.

     I know wandering is part of the whole deal, aside from being a curious kid we have the added bonus of autism to magnify the desire. I was a wanderer as a kid, I once took off through the hole in the fence after tricking my brother into thinking I was inside with my mother and my mom thinking I was with my brother. I made it several blocks on a busy summer day on a shore resort island, its a wonder the police got to me alive. I was old enough to tell them my name, though they couldn't understand me and soon got back to my parents safe and sound. My mother still tells this story every time I have something crazy to report about what Xander's done now.
upside to today: he rediscovered an old toy when he was
suppose to be napping. Oh and he's sporting a new hair cut! 

     But really this one is a duesy, at least I had a serious fear of cars and I was at least 4 at the time. I apparently was able to cross the road well enough and avoid an accident. Xander welcomes speeding cars like they are charging at him to give him a hug. It just stunned me to think that my life could have changed so quickly from something as simple as yesterday he couldn't open the front door, now he can.

    I'm just grateful for God's protection over him and that that woman was there to grab him, even if she thinks the worst of me. I don't know what I'd do without my little Bean and God willing I'll never have to find out.

Wednesday, April 3, 2013

While Waiting in The Car

I wrote this last night while waiting for Alex to finish work:

     Sitting here in my car, at the base my husband's building in downtown Pittsburgh, listening to Xander talk to himself, I lean back and think about the day. We did a lot of running around today, but its those days I love the most. We drove Alex to the city so Xander and I had the car. We completely took advantage of it. Between therapy and quick errands, we managed a short park visit, a playtime at the library and a dinner date at the local diner. Then off the church for the financial classes Alex and I are taking.  We sported our blue awareness wear all day proudly.

     And after all that, feeling exhausted and missing my bed, I can't help but look at the silly little boy in the backseat and laugh. He's not even close to tired. He's nearly fallen asleep a few times here and there, mostly after being in the car for a while, but hasn't actually clocked any sleep for the day. But he's all sunshine and roses. I can't help but watch him. He's talking about the building he can see from his window (at least that's my best guess, its all just gibberish). He's always thought night time was something to laugh about.

     He just looked over at me with a serious look, after a pause in his chatter, as if he was asking me something important. Looking like an idiot for not speaking Xanderese, I just laughed. His serious face melted away into the sweetest smirk, his little dimples caught the streetlight. You could tell he must have been thinking, "oh mom, I can't wait til you stop talking nothing but gibberish, but you are funny!"

     It's moments like this one, that melt my heart. Even without words, we have the best love. He knows my laugh and the very fact that the sound of it makes him happy, makes my life worth while. And really that must be how he sees it, we, the adults, can't communicate. The problem is with our understanding not his!

after the drive home:

      So as our first official autism awareness day comes to a close, now with a sleeping toddler up in his bed. And I can't help but thank God for all that we have. We are blessed with great core and extended family, who care very much about my son and his progress and would do anything to help us. We are lucky enough to benefit from the many services of state has to offer and have not had nearly as tough a time as the many families you hear about today, going tens of thousands into debt in just months. We have a home and the love for each other to warm it, that and electric heat! ;-)

    Sure, we have challenges but I truly believe these challenges, or rather how you handle them, help define who you are. And I wouldn't trade a single one. I love that his delays have given us extra time, and we celebrate the tiniest of achievements more than we did before. Autism in general, has taught me to never judge others, something I'm ashamed to say never sunk in as much as it has now.

     Thank you to all who wore blue today, reposted awareness photos or read up on ASD. Helping end that ignorance is very important to me, so thank you very much!

Edit: I added some pictures I took throughout our day.
He has an eye for detail. He obsessed over that
worn out sticker for most of the trip to the library 

Reading up on his dinosaurs for our trip to the natural history museum this weekend.
Finger licking good dinner!

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