Sunday, September 8, 2013

Cool For School: Our First Week of Preschool

    The long awaited first week of preschool has now come and gone, and quite honestly it was fine. I expected semi-meltdowns, tears, maybe a few "momma" moans, nothing. He was fine. I'm thrilled he did well and wasn't as attached as I thought he was, but I'm more surprised with my reaction. I didn't cry.

totally unrelated note: I hacked off all of my hair!

    He's my first and only child and leaving him for the first time with total strangers in a strange place didn't make me cry?! Really I was more bewildered by the sudden freedom. We got to the school at 9:30am and expected to spend the whole day with him but by 11 they were suggesting we leave. Once in the car though, Alex and I had to scrabble for ideas for how to kill the next few hours. We are so rarely childless that we usually plan weeks in advance the events of our time alone and here was a whole day thrust at us. We ended up walking the local mall and popping into stores we would normally have to rush through if Xander had been with us.

    He has been making some real progress, as far as comfort level, with every day he goes. He accepts the teachers' authority and hasn't had a screaming fit telling them to "go away" yet, though I'm sure the day will come when there's not such a glowing report in his binder.

    He does however seem to use up all of his patience and sweetness at school, leaving little to spare for us or his tss come the afternoon. He's still getting used to the demands of the new schedule and grumpiness is totally normal, but that doesn't really take away from how annoying it is. His new tss is still getting her sea legs and his meltdown the other day over not getting a car ride didn't help anything. All of this will work out in time but man that hardly helps the headache I have festering now.

    He truly does seem to love going to school and learning new things, that makes the future seem all the brighter, even in spite of the crappy mood, if we can foster a love of school for as long as possible, the better service we do for our son.

Thursday, August 22, 2013

The Stuff of Legend

     Like any great culture or society, the autism community has its stories. The kind that are passed down from mother to mother, dramatic and full of conflict. The evil school district vs. the strong advocate parents. Complete with theatrical fight scene. Some jaded parents will sit like battle scared warriors and tell you their tales of services warfare and explain how the system failed them, failed their child when they needed them most. Others will tell of a hard battle, but proudly (and rightfully so) boast about finding a loophole or pushing hard enough to gain the help they needed and winning out in the end. Sadly, those stories don't seem to pop up nearly as often as the former.  

free printables via

    When we first had Xander, I dreaded the idea of somehow figuring out the school system thing. Where do they go, if you haven't lived in the area your whole life, that can be a tricky answer. When do we send them, private or public, what's best for them. The questions go on and on. But never did I expect to being looking at special needs classes, not until his diagnosis. That's when my worry and anxiety amped up and I got sick listening to the horror stories of IEP meetings and service delay cut offs. I feared  most that my son would fall into some infinite pit of a doughnut hole and we would never find our way out. I thought for a bit that perhaps they were inflated stories, like most folklore, embellished with time. I was wrong. It can be as bad as they say, and worse but it doesn't have to be. And in truly rare cases you don't have to fight at all, everyone is on the same page. (sounds like a fairytale doesn't it?)

     IEPs are scary, I wish I could say our first round in this battle wasn't. We had to learn quickly that we needed to stand up for him, more so that we had ever before. I worried we were pushing too hard for something he really didn't need and thought about taking the advice of other moms, to just be grateful for the services they were offering and send him on his way. But questioning my gut was wrong. The best advice I can give is to trust yourself. As autism parents, we are the only one with specialized PhD's in caring for our kids. No one knows them like we do. We need to go through life trusting ourselves and knowing that we truly do have our child's best interest at heart. When we know and trust our own educated feelings on what's best for our kids we shouldn't fear someone challenging us. Thanks to the laws in this country, we have the last say in their education. I'm not saying that just by fighting, you will win. There will always be people the system failed but I think fear can stop someone from fighting a battle they could have won, if only they tried.

    So whether you have sat through a dozen team meetings or still dreading your first, go in knowing that the memory of every autism parent before you is in your corner. We have all fought the good fight at one point in our parenting life and you have advocates in us. Don't back down and don't settle for less than what you feel is right for your kid.

   Good Luck!!

Thursday, August 15, 2013

Clean One Room While He Destroys Another

at breakfast, on the last day of vacation
     In a little over two week, my little boy with be taking his first steps towards big kiddom; his first day of school. We were lucky enough to be able to fight the UI's suggestion of schooling and get into a much more appropriate private school. I'm hearing more and more that some are not so lucky and not amount of pushing, fighting and begging gets their kid the services they need. That just breaks my heart.

     Since his birthday, he's been dropped down to just TSS sessions. Speech and O/T will start up again at school and that will be great, he truly needs them on a daily basis.

    Our vacation and his new jersey birthday party were what I'd call complete successes but they had their moments of friend and family fun. We blessed to have a few good friends take time out of their busy schedules, drive hours in some cases, to spend the afternoon with us. The whole trip was riddled with meltdowns; adult and child alike. But we discovered a sad truth that before now really hadn't hit us; vacations aren't really stress relieving for an autism family. In trying to escape the ridge confines of our everyday, things fell apart for all of us and that was nothing if not stressful.

     But being back home has been good. We loved seeing family and spending more time with ones we haven't in the past, but damn does it feel good to be home. Xander is happily settling back into his routine. My husband cautiously pointed out that his screaming has decrease dramatically. We don't really know what's the cause of this, though Alex swears it started with going gluten-free and vacation didn't allow us to stick to that diet very well. So better behaviors with gluten?! I don't know, maybe. I've always said it had little effect on him in a positive way. But regardless, he's thrilled to be back to his toys and familiar rooms. He starts off every morning dumping out his toys and flapping, while I try to clean up the kitchen from the night before. (I'm usually too pooped to do anything more than watch netflix after bedtime.)

     All in all, its been a crazy last few weeks, and there's more crazy coming. School will be a big new adventure that I can't wait to see him experience. And maybe when he's there I'll actually get the house clean!

Monday, July 29, 2013

Happy Birthday: A Letter to My Son

Dear Xander,

   Today you are three! It feels like only yesterday I was pacing the aisle of that hospital, big as a whale, begging you to hurry the heck up and get out! We already knew by then we were no longer on real time, 9 months before we transitioned to "Xander Time" and haven't been back since. Every step of the way has been on your terms, when you were good and ready. Life today being no exception.

your first picture ever.

    These days you still don't really talk. I'm sure when you read this, you will be a regular "Chatty Kathy," that probably came in your own time too. Lately, I just look forward to the days you are more focused and willing to answer Dad when he asks what your dinosaur or rubber duck is. Those are the brightest days!

    I can't wait to ask you what sensory days are like from your point of view. To truly understand why you want to bang your head and rub your arms and belly. What squeezes do for you and how compressions affect your mood. To hear about what makes something stim worth, why certain pictures are stims and others are just pictures. What about lights makes you giggle and what makes jumping so much fun.

    I hope I've filled your mind with as many positive thoughts as I could manage over the years. That you've grown into a young man who knows he has challenges, like all people do, but that they shape you and make you better not less as a human. I hope you have learned to never be ashamed of your autism, to never feel like you couldn't be whatever your heart desires because of it. You have probably been bullied or told you can't do something because of a delay, most of us in our lives have at one point or another regardless of any diagnosis. Hopefully with our help you stood up to those naysayers and proved them wrong. Whether you were actually able to achieve the goal or not, you were brave enough to try and that's proof enough that they were wrong.

    While I wouldn't take away your autism, because this is how God designed you, I pray it has not defined you. I hope people see the bright brave amazing little boy I see jumping on his trampoline in front of me, grown into a strong loving man first; someone who has done all of this while having autism, not in spite of it. They will not see you as a person capable of less, unless you let them. And that if they can't see past the autism at first, upon meeting and getting to know you, that their opinion of autistic people is changed because of spending time with you.

    My greatest wish for you is that you find love. I don't know what the future holds for you and a thousand doctors can guess and tell me what your life might be like, but until we get there we just won't know. But regardless of severity years from now, don't ever believe for a minute that you can't love. I see the way you look at your father and me and I know you love us. I see it in the serious face you get when you grab my head and sweetly smash your mouth against my forehead, copying my way of giving you kisses. Your father lights up when you guys are having a tickle fight and your eyes sparkle and you start to laugh in that way only Dad can get you to. You deserve to meet someone and fall deeply in love and I have no doubt you will someday. Relationships are hard, they can be hard for anyone, but anything worth having is worth working for.

   You are my pride and joy, I will love you until the end of time. You have made me infinity proud over the last three years and I look forward to many more years of bursting at the seams with parental pride. I can't wait to watch you grow up.

I love you, Xander Bean!

-Your Mom

Sunday, July 21, 2013

This is Going to be a Hard Week

     So this week brings about a lot of changes. This week, three years ago, I had already had three false labor "episodes" and was big as a whale and ready to pop! My baby boy will be 3 this coming Sunday. But its bittersweet. We have to say goodbye to his first friends. Because of the way that early intervention services are designed, birth to three are one unit and three to five are another.

     So Friday will be his last day with the women that have helped him more than words can say. These women have been in and out of our home several times a week; cuddled, yelled at, climbed on and laughed with. They know the silly little things Xander loves to play with. Like the feet of the scale the nutritionist brings with her every visit, that she lets him play with before getting him to play her game and stand on the scale. Or that his speech therapist knows his favorite puzzles and which puzzle fits the mood/level of attention he happens to be in at the time. Or that his o/t is willing to flip, spin and twirl him for her entire session all while talking over updates and changes with me. They have watched him grow up; feel the joy of seeing him learn new things and the pain of him losing some.

     His speech therapist was his very first service provider to come in and for a while took care of his sensory needs too. She really was his first friend outside of family ties and it will be hard to say goodbye to that. Sure he's young and will move on without remembering or mourning but I'll remember. They have helped my baby, they have come in and listened to our ups and downs, given advice and helped where they could. They have become friends. I wish I could express my gratitude for the help and kindness they have all bought into our lives in a time that felt very lonely and restrictive, but I feel like my words are failing me. I'm sure we may try to keep in touch a bit but the world keeps moving and new clients come in, just as new therapists will fill their spots. But there will always be a soft spot in my heart for each person who has come into our lives and helped my boy take even one step farther down his road towards his true potential.

     Xander will be starting pre-school at a private autism based classroom in the next town over thanks to the support and help of not only his therapists, but his doctor, bsc, tss and the advice of the Aboard services. We fought the evaluation that put him in a delayed classroom twice a week for two hours a day because it truly wasn't what was best for Xander and won! Thank God. So in the fall he will be going 5 days a week for about 5 hours. It sounds like a lot for such a young kid but the more help he gets early on the better. And without the support of his early intervention team, it wouldn't have happened.

     Thank you, from the bottom of my heart. I will tell Xander about how you and all the others after you have helped him reach his goals.

Friday, July 12, 2013

The Light at The End of The Tunnel; Just Keep Running!

     On the off chance I actually have a regular reader, I apologize to you. I have not been what one might call a "regular writer" this past month or so and that's not for lack of eventful happenings. Actually the opposite. I wish I could say summer has us bogged down with crazy activities or we are spending each day exploring new places but the hard true of it is that Xander's been getting worse this summer.

This is a snapshot from a 
video we took of him screaming
during a session.
 (noise warning!!)

     Worse?! What exactly does that mean? Well its kind of a complicated thing to explain, but over the last few weeks we have seen a rapid decline in almost every area. My bright clever little boy isn't labeling anything anymore, hell we can only get him to say 3 words and that's like pulling teeth! The screaming and obsessive compulsive behaviors have gotten worse too. Sure it's kind of cute that his little animal lines became parades around the table, but the fits over moving even one toy aren't normal, even by autism standards. His anxiety has always been an issue but that's amped up too. This is only scratching the surface of the new challenges the last two months have brought but no one wants to read a pity party post. Long story short, his developmental pediatrician thinks he has a mild case of PANDAS or PANS and has him on antibiotics. Its a very controversial diagnosis, as some doctors think its a load of crap but if a month of antibiotics might help, I don't see the harm in try the treatment. She doesn't think its a permanent case but its still a scary issue.

     We (my husband and I) try to avoid any thought process that starts with "Why did this have to happen to us..." but for the last few weeks its been that nagging thought at the back of my mind. We try to treat autism as much of a blessing as possible; we have become a strong family because of it not in spite. And we never look at it as something wrong with him or in need of curing, but this sudden onset of intense symptoms just doesn't feel right, if that makes sense at all?

    We are all still adjusting to Alex's new work schedule that basically puts him 10-12 hours ahead of us as far as how his internal clock perceives time. But with Alex home sleeping during the day, when Xander goes down for his nap due to the heat, I get to have time to myself! This is something that is truly rare in my life. With his heightened clingy-ness I can't so much as leave the room or run upstairs without a screaming fit or him chasing after me. But for about 3 hours everyday I get to be Devon. Not Mom, Wife, Daughter. Just me. And that feels good. I start to forget how that feels after a while. Best part is I get an escape from autism. Don't read into that, I don't mean from my son or from his challenges specifically, but just the world AUTISM. I don't have to think about it, it doesn't need to be the subtext of everything I do like it is the rest of the day. I don't need to worry about what's next and why he's getting worse. I spend far too much time with that word bouncing around in my head and I need an escape.

    So I run. I started a few weeks ago and every day I've been trying to get out to let out some steam. I joined a gym, due to the heat, it wasn't healthy to run in the middle of the day when he naps. But luckily we have a minor break in the weather and its beautiful to be able to kill myself running up a hill just to see the
view from the top of a hill behind our house
with a loose gravel road and stream. I love where we live!
view from the top! I sent myself the goal to run a 5k on October 12 this year for a local autism school, they are raising funds for a playground. That's the day after our fifth wedding anniversary, so I thought it was a fitting day to celebrate autism, my marriage, my family and my health. I have a wonderful group of friends, new and old, who are supporting me with this new challenge and I honestly feel like I wouldn't be handling this new situation without getting out there everyday. There is nothing harder than watching your baby lose the words he fought to hard to gain. But we aren't giving up, gradually things will improve and we will get our Xander back. But until than we just need to keep pushing til that next ten feet, then the next couple of yards, half a mile and before we know it we will be farther than ever before!

Friday, July 5, 2013

Meeting Others Like Us

     I don't often surf other Autism blogs but I do have a few that are my regular reads and "Autism with a Side of Fries" is one of them. I instantly feel I can relate to her posts. After days ago, she posted about meeting spotting other ASD families. I recently had an experience with meeting a sweet little boy and his mother at the park.

We live in a truly beautiful area!!

     As we approach any play area, we first survey the swing situation. Are there swings available? Who is around the set, teenagers who have no real business being in a kids park, loud big kids that might get nosy and ask too many questions (yea that's happened and explaining to a 7 year old what "antisocial" is isn't any easier than using the word "autistic.") or perhaps we will get lucky and there will only be a quiet little girl who's happily swinging in her own little world. This time as we got closer, we noticed a little boy, who looked to be Xander's age, swinging in a "big kid" swing with a ridge straight back, starring off into the cloudy sky. My husband and I exchanged a look. It's odd to see a three year old sit so still on a swing designed for bigger kids, but Xander has been very good at it since before he was two. It sounds silly to say that tipped us off but it did.

     We got Xander on his swing and set up and he happily zoned out, enjoying one of his favorite activities. Being the "Chatty Kathy" that I am, I decided to try to make conversation with the little boy's mother. I asked the little boy's age and we had been right with our guess, they were only a month apart. We exchanged a bit of idle talk, when her son cut us off with broken words that seemed to make sense to him alone. That confirmed it for me. The mother saw me smile at the little boy and informed me he had a speech delay. I told her Xander did too, though it was unlikely she'd hear him talk at all while he was swinging. I also said that he was autistic. She seemed to loosen up a bit and commented that they had been told by his early intervention team that he was too but she didn't think it was the right time to go to Children's for testing.

     That's when it hit me. Crap. She's in denial and we are one of those "wear it like a badge of honor" families. I had to switch into tread lightly mood fast. Apparently we shared a lot of the same therapist and they had been making suggestion for a while but she felt it was that big of a deal. The boys had a lot in common, both good and bad. But it was pretty clear after the 45 plus minutes we were there that this little guy was just like our boy and our therapists were making accurate recommendations.

     I answered her questions about our process of diagnosis and explained that yea it sucked to hear something was wrong, but it wasn't a surprise. We knew something was up, now it just had a name. Autism doesn't make life easier but it adds color and variety to our lives in a way that I don't regret.

     By the end of the conversation she said she was feeling better about it all and that she might look into making the trip after all. I truly hope she did. In my opinion, no matter how hard you fear it will be to hear what you expect, it will only get harder with time. Once you hear it, see it on paper, you can start to accept it and embrace it. Autism is part of who my son is, not who he is but a part of him. He would be different without it and for that reason I wouldn't wish it away because I love him just the way he is. But staying blind to the situation in front of you is never healthy.

     I hope, in the coming years of school and therapy, I bump into her again and see that they are all doing well and maybe in some small way what I had to say to her on that overcast day at the park helped. From one Autism mom to another.

Tuesday, June 25, 2013

So Far, So Good - The New TSS

    Well we have had the new tss for about a week and I must say its nice to have the help back again. This guy, let's call him "David," is really good with Xander. He likes getting down on his level and playing but when work time goes, he's all business (which Xander needs.)

    Today is our first trip to the lake with David to help me manage Xander. We are going to be working on swimming lessons. Because Xander can't so much as lean back without feeling lost and freaking out, getting him to relax enough to learn to move in the water is tricky. He loves to stand chin deep and splash and wants to go out deeper. The obvious problem being he can't swim yet and won't wear water wings, but is also too stubborn to agree to hold on to one of us to help tow him out deeper. He Must do it himself. I have no idea where he gets this trait from, (cough, cough...from me? what nooooo.... well according to my mother, he does but she's biased)

    I'm hoping for some success with his trusting us in the water by the time we go on vacation in August, but I don't have very high hopes considering that its 39 days til our trip. And yes I'm counting.
picture unrelated for the most part but because of a phone issue,
I don't have any new shoots, so this older one of Alex and Xander
with C3po will have to do!

    Being born and raised on an island has its perks, one being that I don't really recall learning how to swim. I theorize we were born with gills and somewhere around age four they simply faded away as real skill developed. We spend nearly every day at the beach from the time the temperature got above 65 degrees until well into the next school season. But Xander has never been a beach kid, despite living no more than 500 yards from the bay for the first two years of his life. He hated sand and while the waves excited him, the strength they used to bowl him over scared the crap out of him.

    But another perk to growing up at the shore is that no matter where I move, I can always "go home" for vacation. Our family and friends all get together for a big bbq party we host at my parent's house each year for Xander's birthday. And now that we live so far away, its our only chance to see some of our more busy friends or relatives. This year the theme will be dinosaurs (big surprise right?!) but that's proving to be a more difficult style to find, everything is superheros or disney characters and we've been there, done that!

    Besides the swimming in the ocean, I'm also a little curious to see how he reacts to the boardwalk and all the rides and lights. There's no sensory safe version of the boardwalk, that's for sure, unless you go midday when everyone else is smart enough to stay out of the sun or be in the water. But honestly, I see him being in stim heaven, as long as the crowds don't freak him out. There are milder activities, like bike rides, trips to the zoo and walks in the shopping districts, so I'm not all that worried if he doesn't do well with the crowds and lights.

   All in all, its nice to be getting back to a rhythm of the week and knowing there are people coming around to help that can be trusted. The vacation will be welcomed whether or not we have a sensory fit, we will just have to roll with his level of comfort at the time. I'm still intensely looking forward to it, it should be a blast!

Sunday, June 16, 2013

Google Search: Word For The Stage After "Burn Out?"

puddle stomping after all the rain these past few weeks
    Maybe its the heat or the fact that our son seems to be in a endless battle of endurance against the Energizer Bunny, but my husband and I have officially filed for "burnt out" status. We have had a series of bad luck with services lately and with worsening behaviors from the little man, have been feeling the affects more than in the past.

    Xander is filling in the gaps in his diagnosis; taking up echoing our speech, compulsively lining things up and still insisting on a blood curdling scream at the slightest hint of annoyance. Every day I go and get the mail, I pray that his new pressure vest will finally in that little black metal box, but its a pipe dream, just bills and junk mail. I have a strong suspicion that the company we purchased it from must ship via pack mule or take the term "snail mail" too literally. When in reality, it's likely that its just my mind playing tricks on me and being exhausted is just making the wait seem like an eternity.

    After the fiasco with the last TSS quitting a week early, the morning she was due in for a session via phone call to her BSC, who didn't receive the message in time to inform me of the sudden change (burnt out + fuming mad = glimpse at my state of mind this past week.) I'm looking forward to meeting our new guy today. He's older and more experienced, working as a high school teacher during the school season, so I hope my higher expectations are not ill placed.

   We are getting to crunch time as far as services are concerned, with Xander's third birthday closing in on us. We are in the middle of signing him up for preschool, though the class we had hoped to get him into five days a week is apparently full. The out patient services still telling us that after more than 6 months with completely open availability we are at the same spot on the list, so it seems unlikely that we will make it to the top by August. Alex and I agree that these factors mixed with the drama of the TSS issue is probably why we are feeling it more this past week, more so than the last few weeks. Plus I have a feeling that its the sort of thing that builds up in your system; small amounts of frustration and exhaustion piling up over time until suddenly you feel like you need to climb The Great Wall of China every morning to just get out of bed. We have it better than most, we know that and are incredibly grateful but that doesn't make the challenges any less taxing.

Saturday, June 15, 2013

A Sweet Moment: Exploring New Friends

(Sorry for the delay in posts. It's wonderful having a working computer again!)

     When describing Xander's demeanor to therapists when asked about social interactions, I always say he carried himself like a "little adult." I usually get a little chuckle and some kind of comment like "oh that's a good observation," or "I could see that!" He will often completely ignore any children his age or younger and his only interaction with older kids are usually acts of using them for sensory needs, (grabbing them, headbutting, pushing his body into them etc.) His interaction is also very limited with adults. He either loves you or couldn't care less about you, its as if you don't exist. He has picked a small group of adults, outside of his father and I, that he cares for and will only show them small signs of affection when he mood strikes him. Up until a few weeks ago that small group of people only included one child, a friend's little girl. The only kid Xander had willingly played with and tolerated shared activities with is little Miss Syd. But now we have a new little guy to add to the list: Mr. Bryson.

    Bryson and his mom, Lexi, a fellow whovian and mommy friend of mine, come over about once a week. It took Xander five months to warm up but the other day it finally happened. While us moms were chatting away in the kitchen, Bryson was still napping (we thought) in his carrier. Xander climbed under the carrier's canopy and by the time we noticed his face was right in the baby's. I, at first, panicked, thinking he was going to accidentally hurt the little guy but Lexi seemed very calm so we stood back to see where this was going exactly. Xander grabbed him by the head and gently (enough for a kid who can't figure out his own strength just yet) moved him from side to side. Then he smashed his mouth on the infant's forehead, kissing him much like the way I kiss him. I couldn't help but laugh. He ended man handling Bry's head for a few more minutes, looking him over and giving a few more kisses before walking away to explore a new thing, and only after he left did the baby cry, he was loving all the sweet unexpected attention. All of my worries that Xander would have been a distant big brother faded when I say him treating that sweet little boy like he likes to be treated. Granted he's still jealous as all hell and refuses to some much allow me to hold another baby but that will come with time. This interaction is miles better than his behavior towards my nephew just a few years ago when he would literally step on him because he didn't seem him as anything more than a "thing," with little regard for feeling.

    I'm grateful to have an understanding friend also. Most would not have been as accepting of the rough questioning nature of the "exam," but the fact that she understood my excitement, understood the magnitude of this tiny moment and rejoiced right along with me is rare.

    I'm confident if we could have made a bigger family, Xander would have made an amazing big brother. His curiosity and inquisitive nature would have made for an amazing role model, making them both into little trouble makers... So perhaps its a true blessing he's an only child. I have my hands full handling one trouble maker, more and my hair would start falling out!

Tuesday, May 28, 2013

Ignorance: The Medias and My Own

    I have beat myself up so much, over the last year or so, for the ignorance and unsolicited sympathy I had towards autism and the families affected, that I'm surprised I don't have actual bruises. All of the times I did the things I've grown to hate to other parents with special needs kids: saying "I'm sorry" the second they mention the disorder, try to relate with the old "my neighbor's cousin's best friend's kid goes to school with someone who has autism," and then try to reassure them that their kid I had spent ten minutes with "seemed perfectly normal to me." The list goes on and on and I'm sure you could think of a few before you are even done reading this post.

    I can remember back to just after we got married, to a family event with a very close family friend, his wife and children, one of whom is autistic. Their son played rough nearly all night with Alex, beating him up and nearly exhausting him in a matter of an hour or two, he even insisted on sitting on Alex's foot and having him walk around with him hugging his leg. The whole drive home was talk about how we could never handle that all the time, how he was almost 4 and not talking, extremely rough and full on nearly endless energy. We pitied our friends for what they had to go through, and not that I believe in karma but I think God does have a good way of teaching us lessons and helping us grow. I'm not saying that these feelings led to our son's disorder as some cosmic punishment, rather the vivid memory of my exact emotions from that night humbles me and reminds me that I once was rude, insensitive and ignorant and I can't expect others to be any different than I myself were a mere few years ago.

     Recently my husband saw that "Rain Man" was on Netflix. A movie that I had never seen and had only heard reference when someone was looking for a "polite" way to call someone "retarded." Since becoming an "autism mom," I've read more blog post, facebook comments and articles over the last year than the prior years of internet use combine and in the autism community "Rain Man" is referenced to A LOT! But in a very negative light. Googling the phase "my kid is not rain man" gave me 140 million results in less than half a second! So clearly this is a common thought.

     Now before having watching this movie, I'm ashamed to say I jumped on that bandwagon. I simply judged with the court of public opinion without forming my own view point, without witnessing first hand what the movie even had to say about autism. My husband, in all his wisdom, pointed this out to me and not wanting to stick with this flawed mindset, I watched the movie.

     Now to get a real idea of how old this movie and information in it is, keep in mind that I wasn't even alive when it was in theaters. That being said, the description of autism to Tom Cruise's character in the first meeting scene is still factually true, though grossly oversimplified. They hardly scratch the surface of what autism is and why its not a mental illness, but at least they make a point of saying he's not "crazy" or "retarded" for what its worth.

     In nearly 25 years there hasn't been any huge leaps in the understanding of autism, what causes it and it changes the brain. Though, their definition of "high-functioning" is something I think most people get have an issue with. Raymond didn't receive any early intervention services as far as the movie tells us, he was simply dumped in a facility and his needs catered to, he basically lived in a bubble. So for him to be talking and expressive without therapy, he probably was very high functioning in a sense. Imagine what kind of adult he could have developed into if he had received modern therapy or even the therapy Temple Grandin received in the 50's? Nowadays, a lot of the behaviors he had are usually worked on in the first few years of early intervention and not nearly as noticeable in adulthood for high functioning individuals. I think its also important to point out that a lot of the people we now refer to as "high functioning" wouldn't have even been on the spectrum by early 90's standards, with time and research the parameters of the testing standards are very different now and still changing.

please note that h/f and l/f are not the same as severe/mildly autistic.
You can have severe autistic traits, like extreme sensory issues
and be completely able to live independently etc.

Please also note that this visual is my guess/opinion
of where he would be, NOT a medical opinion.

     The other major issue I think most parents have with the movie is the "magic power" mentality. In the movie, Raymond has the amazing ability to do complex math in his head. This can be a "side effect" of autism but to this level of amazing is very rare, on a more realistic scale autistic people do tend to have a special ability to understand one topic very well and lack understanding in other areas, such as social skills. Similar to a blind person having acute hearing. This part of the movie is clearly inflated due to the fact that IT'S HOLLYWOOD! It just makes for a better story from a screenwriter's standpoint.

     To be completely honest, I can't really say whether the idea of "Rain Man" offends me or not. I've only meet a few autistic adults very briefly and mostly out of shyness I've trying to not seem too nosy. So as far as how that relates to Xander, I don't know. Maybe when he gets older and we start to get a true grip on his learning skills and level of intelligence, I'll have a better understanding on how this movie affects me emotionally.

     I was just about to suggest that it would be a good idea to make an updated portrayal of a high functioning autistic person in today's society when I realized its far more common than we even realize. Characters like the main character in "Bones," Temperance Brennan, the son from "Parenthood," Dr. Spencer Reid from "Criminal Minds" and Sheldon from "The Big Bang Theory" all display signs of being on the spectrum (some confirmed in canon). These shows give a much better, though still dramatized, view of autism in real life. "Rain Man" is out of date mainly because a lot of people on the spectrum now, thanks to better early intervention services, are hardly distinguishable and Raymond's character, more or less, just further spreads a false stigma about what it really means to be high functioning in today's world.

    But just as I have learned to forgive myself over past ignorance, I think we need to cut this movie a little slack. Their heart was in the right place and while it may have done more damage in the long term it gave ASD the limelight for a little while. Though awareness is nothing if the information is faulty. So I guess at the end of it all I'm cut pretty evenly on this one. I think I'll just reserve judgement, after all when every person with autism is so different how can there really be a true and wholly accurate display in media.

Monday, May 27, 2013

The Verdict is In

      If you aren't a regular reader, I'll fill you in quickly on what's been going on developmentally with Xander. In the last 6 months or so, we have seen a real increase in both positive and negative behaviors. He is starting to talk and ask for things (with prompting) more than ever before, which is a huge win! He's always slowly taking on activities others want to do without so much of a fight and devoting more time to things like reading a book or doing a puzzle.

     He has however had some negative new things arise. With better vocalization has come this God awful scream he uses whenever he's too happy/sad/excited/annoyed etc to express himself. He's always taken to repeating himself or others like a broken tape recorder. Without the tv, his visual stims have increased and have caused more than one public display. All of these and more were things we discussed with his developmental pediatrician and BSC, who both felt he was showing more signs towards Autism over PDD-Nos now that he was getting older. As far as his DP was concerned she had already labeled him with Autism in her paperwork but his formal diagnosis could only be changed by his psychologist.

     The benefit to a change in diagnosis would be the options for preschool specialized classes would be greater. We could check out the autism class AND the developmentally delayed classes and make the best choice for Xander rather than have no choice in the matter other than going the private class route.

    Earlier this month, we had the visit with the psychologist and with the help of our BSC we covered all the bases, detailing all the changes in the last few months. We talked a bit about the changes happening this month with the new version of the DSM-V and how that might affect Xander but he informed us that their company as of right now was going to stick to the old test criteria until farther notice. He was surprised to hear that the woman for the intermediate unit told us that with his PDD-Nos diagnosis Xander couldn't get into the autism class, he advised us to fight like hell if that seemed like the right class for him, but made a point to say that it might be a moot point after he was done going over the results of the interview.

    Two very long weeks later, the eval write up showed up in the mail. And it seems it is going to be a moot point because he has been changed to autistic disorder (PDD).

    Now please don't read this and assume that all we care about is getting a label and go off on me about how that shouldn't even matter to us, we are horrible for obsessing over a label, we are limiting him by even talking about it etc. (yeah that's happened before!) 

    We only care from an educational/funding/services point of view, plain and simple. We don't see him any different now than we did when he was born and love him more everyday with or without diagnoses and labels. If anything this has made us even more proud of our son; his determination, strength and brilliance amazes us daily! We have accepted and embraced the challenges we, as a family, will face in our future and this is simple a stepping stone to a more accurate way to help him get to his full potential. And we see no limit in sight for the amazing things he can achieve!

For more info on the differences between PDD-Nos, Autism and Asperger's, 
click the"Learn About ASD" Tab under the header and explore those sites!

Saturday, May 25, 2013

When in Need of Spoiling, Call Grandparents!

     Well this week has been surprisingly long yet all too short. My sister was here last weekend and my parents came for a quick visit the last few days. Now everyone is back home safely and I finally have time to share the pictures.
Even the robots had some autism awareness

     One of our new favorite day trip activities is to explore one of the many local museums. Thanks to Mr. Carnegie we have more than a few to chose from and they never disappoint! This time we went to check out the science center. Of course, it was hell to get to and I nearly gave up because of all the traffic from the rained out Pirates game but in the end we got there and had a blast. Before checking out the exhibits, we ran outside in the rain and snapped a quick picture with the museum's dinosaur statue for our hunt!

     We started in the train area and quickly moved on to the robot section. Xander loved the nearly endless amount flashing buttons but I started to get the feeling that if we did leave that area soon we may end up living there. What was my tip off? Oh when my toddler nearly hip-checked an elderly couple after spotting a small flashing button from across the room and hauling ass to get to it. So after breaking his little heart and leaving that section to check out what so on the next floor.

     This next area was all about coral reefs, currents and how similar fish and submarines are. All of which he was fascinated by! He spend a good half an hour running back and forth between tanks and displays checking and rechecking all of the fun things to see and touch. Luckily this floor was very low traffic and we were able to just sit on a bench and watch him run around like a maniac.

He even found Nemo!
    Since the museum was going to start closing and my mother insisted on a trip to the gift shop, we then wrestled a screaming Xander back into his stroller and made our way back downstairs. Within no time at all, Xander had picked out his "museum treat" (each trip he has gotten a plastic animal or dinosaur of some kind) and Grandma was holding up t-shirts trying to pick her favorite. A polar bear tee, dinosaur bean bag and plastic turtle later and we were off to meet Alex in Market Square for a late lunch.

    It was an exhausting, but wonderful trip and ended up making their short visit more memorable. Xander caught on quick to the idea that if you want something, simply ask grandma or grandpa and they were all too happy to oblige him of his nearly every whim, including playing outside in the rain and sleeping on top of grandpa all night. Sadly, their trip ended all too quickly but it won't be long before our summer vacation to the shore in August!

Sunday, May 19, 2013

A Short but Fun Weekend

     We are lucky enough to have always lived in beautiful places. I was born and raised on a barrier island in southern New Jersey, we later moved to the "mainland," about 500 ft from the bay and marsh. And now we live surrounded by amazing tree covered hills with mountains and rivers near by.

     Like nearly every other little boy his age, Xander loves being outside. That wasn't always the case though, and it took us so long to get him to tolerate grass even while wearing long pants and shoes. Now he has no problem running around bare footed in tall wet muddy grass! As much as he loves grass now, his favorite part of nature is WATER! He loves playing in puddles, small streams, lakes and the ocean during vacations back home. So this weekend while my sister was visiting we decided to take a trip to a lovely spot we hadn't been to since falling in love with western PA and moving here, nearly two summers ago. Normally I don't post 90% photos but they tell the story better than I could.
11 month old Xander playing on the rocks

My sister, Nicole posing for a shot in the middle of the river


My attempt to take a picture under the waterfall ended
 with me falling into the water and getting soaked

Here are a few shots from the night before when Nikki, Xander and I went to the park for a quick play time.

We made some really great shirts for the autism walk but sadly were unable to go this year. But you can never have too many awareness shirts. used the method from this post tutorial

Sadly, due to work issues, Nicole had to cut her trip in half and head home before we could get a good dinosaur hunt in but with an unscheduled trip to the city on the books for tomorrow to see Xander's developmental ped about the screaming issue and my parents visiting at the end of the week, I'm sure we will have some to add to the page soon!!

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