Tuesday, November 9, 2010
Wednesday, November 3, 2010
I have heard there is a funny side to Autism but I do believe there is a sweet side too. The sweet side is the side that keeps you going when things get ugly. I know this because I have had a chance to enjoy all of those sweet things my PDD-NOS child says to me; things that are so unique that keep me wondering about his world and how he looks at everyday, ordinary things. Lately, the new thing he says to me when he is sleepy and he wants to go to bed is: "mom, let's start dreaming" - this just sounds so wonderful to me...Every time he says this, I think of new possibilities, new beginnings, new opportunities and the chance to dream up a better tomorrow. The term he uses to define the action of "sleeping" takes everything to a whole new level...For Frankie it's not only about resting, it's about stating what he does while he is asleep: He dreams! I know he doesn't dream ALL the time when he is sleeping but just realizing that my kid has dreams is amazing to me. Because Frankie dreams, and he is aware of it, I know that life in the spectrum is not black and white and it's not simple at all - it's actually complicated and full of interesting terms to define a different kind of world.
In this world of Autism - the world of Frankie - life is defined in pictures, in specific terms that project the intangible. See, for Frankie I don't have white skin, I have "vanilla skin," he doesn't have brown hair, his hair is "chocolate hair," and of course, my fake red hair is not red but "fire hair." I know that all of these might seem irrelevant and not even worthy of a blog entry but it is, it's so worthy! These are the little things that encompass how special these kids are - Autistic children are unique and each one is like nobody else. I can't think of anyone I have known who calls things by such amazing names....the everyday becomes so special and the regular things take form in their attributes rather than in their definitions. It's amazing to realize that this same boy who understands things literately so often, can also perceive the world in such a creative way.
I tell you, it's all a bout the silver lining and the time you take to understand it, appreciate it and ultimately, cherish it.
Monday, October 25, 2010
A "fork-spoon" is NOT a spork. It's not a hybrid-it's the real thing, one spoon, one fork, stuck together with scotch tape. The creation of my little man, Frankie, and already being ordered by Victor and Becca because of its very efficient mission. Use the spoon for your rice, turn it around and pick up your chicken with the fork. Very, very, smart!
These inventive creations are the everyday things that make kids in the Autism spectrum very interesting human beings. There is an upside to being "different" and seeing the world in a unique way - it's called creativity. Frankie can be rigid at times and struggle with complying with society rules but his very weakness represents his most valuable strength. The invention of the "fork-spoon" by Frankie came about as a response to not wanting to comply. Here I am, asking him at dinner if he wanted to have a spoon or a fork for eating his dinner and what's his response? I want both. Of course, I said he couldn't have both - why???? Just chose one or the other! He just couldn't understand why he couldn't have both and to be honest, now that I look back, I don't see why either! Once he stayed on this course, I went along with the idea and the result was the "fork-spoon" you see in this picture. Very handy....I must say it actually takes skill to wrap up those two together but mostly to alternate them while you are eating. It's priceless to watch.
I figured after so many dark blog entries lately, I should get back to the root of why I started to write about our family's journey into the Autism spectrum; the desire to highlight the positive and not the negative. I take little pieces of our days and freeze them in time on this blog, usually so I can remember what is so special about our little guy and why we are fighting so hard to help him get as far as he wants to go - the sky is the limit.
The "fork-spoon" is only one of the many gadgets he goes around the house creating to make life interesting and different. We are so lucky to be part of his unique world.
Saturday, October 23, 2010
At this local juice bar in Mount Lake Terrace, a "slap in the face" will cost you a dollar...I got a real one recently for free, compliments of my little Frankie.
I don't know if you have ever gotten a slap in the face but I don't think I remember getting one; perhaps I earned one or two in my teen years but honestly, they must not have made an impression because I can't remember if I did or not. The one I got a couple of days ago burned my face for a few hours but I know I will remember it for the rest of my life.
Needless to say, we are still struggling with Frankie at school. Things are not getting better, perhaps they are getting worse. Everyday I pray that he didn't hurt anybody or that he is not so frustrated when he gets home that his whole day is ruined. All the while, I have been trying to be positive and have infinite patience with him but here is the deal, I had not yet gotten hurt. My turn came up and I got a slap in the face. In the face! Boy, it hurt my pride more than it did my face. What was I doing wrong? Why is this kid not getting it? Why is he so angry he is hurting me, his mom, the one person he probably loves the most? I was speechless. For once, I was speechless. His therapist says we talk too much to Frankie - well, this time, he got no words from me for sure. Of course, time-out followed the infamous slap for Frankie but the one who needed it the most was me. There I sat, struggling between being angry and being embarrassed...All the bells and whistles went off in my head and the haunting stories I read in the past years about parents physically abused by their teen Autistic kids came bursting in. I kept on telling myself that was not my story. I refused to allow that to become Frankie's story either. My sweet kid is somewhere inside this angry child and I know he will come out, sooner or later. Regardless, my worst fears were taking shape at that moment - Frankie has been hitting, biting, kicking, running away - it's all falling apart and I don't seem to be able to glue it back together. I know some parents will be thinking at this point that Frankie has a discipline problem. Perhaps that we are not consistent enough or strict enough. What I see is a kid in pain and struggling to deal with an environment he does not fit in. My job is to help him cope and I am failing miserably.
Since the slap in the face, I have woken up to a new reality. These are the years that will make it or break it - either I help Frankie cope and fit in or I miss the boat completely and he will struggle with regulating his emotions for a long, long time. I choose to conquer, and I know I will. Frankie needs me to fight and not sit here and cry over a burning face and a hurt pride.
The slap in the face at the juice bar might wake you up in the morning, but the one I got that day did more than that, it woke me up for the rest of my life and I don't think I will fall asleep again.
Sunday, October 17, 2010
A change of clothes,
A stress ball,
A plush Sponge Bob,
I SPY books,
A pouch to hold certificates awarded for being “good,”
Noise canceling headphones. No, not these yet - I am still deciding if I should include them or not…
What kind of backpack is this? It's the one my preschooler carries around every day. Not a typical backpack for a little one; some of his classmates don’t even take backpacks to preschool but Frankie does and we are constantly adding more stuff to it. This is his gear for battle. Being a preschooler is not easy but being a preschooler with PDD-NOS is really hard. The noise, the rules, the schedule, the noise. Did I mention the noise? It can’t be easy to function when so much is expected from you. I know it’s not easy for me, so I can understand how hard it’s for him. I guess I can see why he is not all excited about going to school every morning; it’s not all fun and games when you are picked to be the goose at duck, duck goose game and you don’t want to run after your classmate because you are afraid of failure. It must be crushing to get up in music class and give up your spot in the rug when you have claimed it as your own. It’s not fun to have a meltdown because your hot dog bread came apart at lunch and you have ketchup on your shirt. And it’s certainly not fun to ride a noisy school bus for half an hour before you finally make it home. I keep on telling him school is fun. Now that I think about it, it really is not. When I came to that realization, I stopped trying to make Frankie like school and I just focused on getting him prepared. Here is how it goes: Frankie, do you need down time? Here are some happy books. Do you need stimulation? Here are your I Spy books. Are you mad? Squeeze the stress ball. Are you sad? Hug your Sponge Bob pal. Are you having a hard time cleaning up, packing up and lining up? Play a “beat the timer” game with your teacher and win a certificate!
Man, it’s exhausting. But it has do be done. We are lucky to count with such great professionals who want the best for Frankie. They endure being pushed, kicked, hit and lately bitten. It's not as bad as it was and he's slowly understanding school is not going away and he must find a way to cope. The strategies we are using are working and his days are not so challenging at times, but each day is different and a new situation teaches us he might need another “tool” to help him endure the process....like the noise level getting too much to handle. Are really headphones the answer?
When I look at my first-grader's backpack and it feels so light, it makes me want to cry. It’s just not fair. I open it and I see a folder, a bottle of water and a snack. No “tools” to cope. No timer. No headphones. I pray that one day Frankie can also leave all of these things behind and take a lighter backpack to school. I know that day will come and when it does, I will blog about it. In the mean time, his backpack will be heavy but it will help him get where he needs to go.
The economy is pretty bad these days and even the devil can use a break, so I heard he was holding a garage sale recently to make some extra money. He was selling, among other things, all of his special weapons to tempt man....all but one. There was a special box he did not include in the sale because that was his most important weapon and he couldn't do his job without it. Guess what was in the box? It was "despair." Once he hits a poor soul with despair, he is fried. No hope means no praying. What for? If there is no hope of a prayer being answered, despair leads you in all sorts of different ways, but never in the way to the light. Clever Lucifer!
So this was a joke I heard in church last Sunday. I don't particularly write much about sermons and I don't preach. I just tell a bit of my life, my thoughts and a lot of the crazy things that go on inside my head. This stuff I heard did not just came and went from my head - it stayed inside and it has been going around in circles. The devil of the story was right on the money. Despair IS indeed, the best deterrent from a life of prayer. Regardless of religion, any person who believes in a superior being prays in one way or another, mainly because we want to have hope, - well, I already wrote once about hope so I am not writing about that again - we want to believe that things will eventually get better. And they do. Eventually, they do; if you wait long enough. Now, if you are not willing to wait, somehow things do get a bit, let's say, bleak. Despair sets in. The Devil is in business.
When I moved to Seattle, I heard so many stories about how EVERYONE got depressed here at one point or the other. I heard that, statistically speaking, Seattle is the city where more suicides happen in the United States. This is eerie, I don't argue with that but I always wondered what exactly can get a person so desperate and so sad that they decide dying is better than any form of life. Even when I think I might consider this alternative if I am terminally ill, in a lot of pain, or hopelessly dying, even then, I wouldn't choose to kill myself. I guess it's just genetics and I will never be able to relate to that choice, made by others in such high percentages. I like to think that rather than it being a genetic thing it's a "hope-prayer" thing. It has been very few and far in between the times when I have hit rock bottom but even at the bottom of the hole, I always managed to get some sort of rope sent down to me from up above and I never despaired, and when I did, it was usually momentary insanity - nothing that a little praying couldn't take care of to get me back on track.
Prayer. This word is not politically correct lately. Nobody wants to be told what to do, what to say and what to believe in. Granted, it's a free country and unless there is "something in it" for us, we really don't want to be bothered. Well, there IS something in it for you when you pray. You might not get the answer you want, but you do get an answer. The most important thing that happens when you pray, meditate, count your beads or chant, is not the answer from God, it's that you stopped and went inside your own self to get the balance you need to wait, to make a plan, to get patience, to endure. The strength that comes from finding your center is the harmony that comes from praying. The best thing of praying is prayer itself and no devil can ever make you despair if you can find the answer to your questions within your own spirit.
Tuesday, October 12, 2010
"Being still" and "doing nothing" are not the same thing. I didn't hear this from the Dalai Lama, but from Jackie Chan. Jackie Chan might not be the best source for Zen-related advice but ever since I watched the new version of the Karate Kid this weekend, I have been thinking about that line from the movie. A dear friend of mine is always talking about reading the signs of the universe - he is a fan of Paulo Coelho, of course - but I would never expect to receive deep messages from a worldly movie like the Karate kid....see, the signs are everywhere and they come in all sorts of packages; you just have to be still and listen.
Being still....There is a new concept for me. If you know me, you know I am everything but still. Doing nothing is just not in my book - I hold world records for packing and unpacking an entire house; I can clean fast and well; I can get a "to do" list done in a flash. I am a mover - I am a shaker and I like things to roll. Now, being still, that's hard for me. At this point in my life, I am faced with many challenges and situations that require stillness more than actions. I can't rush into them and I have to be patient. This is a hard concept to grasp when I feel all the time that being still IS the same as doing nothing. But you see, I am not doing nothing, I am just....still. Things are falling into place like big pieces of a puzzle and I feel like I am seating around observing this crazy rain of events fall around me. The more I stay still, the better the view gets - it's not blurred by my constant running around, stressing much and accomplishing nothing. When I am still I am gaining strength, for when the time comes to get up and run, I will know exactly where to go and it will save me time. Stillness promotes inner peace and silence of the soul gives you clarity to understand what the next step will be.
I thought I had a crazy ride with Frankie's early intervention years, but I realize now that the ride has just begun. If I am not still, I will keep on missing the whole picture and I can only see fast flashes that run wild before my eyes. I have made that mistake before, over and over again. I was told before that I didn't "aim and shoot" but just shot and forgot about aiming. I am busy aiming now and not shooting just yet; waiting for the right angle, for the right moment...being still so I don't miss. Being still and doing nothing is definitely NOT the same thing.
Thank you, Mr. Chan.
Monday, October 4, 2010
Saturday, October 2, 2010
So here is a random post.
The lottery - who doesn't want to win it? All you have to do to get it is to play! That's it.
I have a funny story about the lottery....when I was in HR, I used to enjoy doing new hire orientation; it was so much fun for me! One of my favorite ice breakers was to ask everyone what they would do If I would hand them a million dollars that day, you know, like winning the lottery - Pretty much everyone wanted to help their families, buy a home, pay off their debt and start their own business but the answers I really enjoyed were the fun ones! some people would just get really into the game and talk about what was secretly in their hearts - fun stuff like traveling, learning to play an instrument, going back to school to study something that had nothing to do with their current career, and some even wanted to become writers or singers! There was always someone who wanted to get a face lift, perhaps a liposuction; others wanted to buy an expensive sports car, a boat or a motorcycle, The crazier the stuff, the more fun we had with the game. When you are given a million dollars, and you are allowed to make your dreams come true, the true desires of your heart come out freely - who doesn't like to dream? I know, I do! But here is the pickle....most of the time, we are afraid to make dreams come true because we see them as that, just dreams, unrealistic wishes that we know we must not discuss with others so we don't sound immature or just plain irresponsible. We are too busy making ends meet and coping with what life throws our way that it's easier to live on passive mode than on proactive awareness. When we leave it up to chance, just like winning the lottery, not only can we afford those sound, responsible things, like paying off our homes or debts and putting our kids through college, but we can also indulge on the other stuff, the fun stuff we don't talk about. Neither the practical things or the crazy dreams are impossible to obtain without the lottery; they just take longer and require effort and patience, besides a good plan to get them accomplished. It all starts with knowing what we want and that's really the tough part.Whenever we played the million dollar game, I also remember that employees wanted to know what I would do with the money too. My answer was always the same....I would turn around and give it to my husband or to my dad; "they would know what to do with it." I thought that was a funny way to end the game, and we all had a good laugh with it - the sad truth was that I really didn't have any priorities of my own other than the ones that were given to me by others. This was shocking because I'm well known for having many plans, usually Plan A is only the beginning, I also have Plan B, Plan C and of course, an emergency plan when the first three fail! The problem is that my great plans are made to obtain practical and sound goals. They usually benefit others and have to do with grown up issues. I didn't have fun plans. Most of all, I didn't have a plan for ME because I didn't have a clue of what was inside of my own heart. What were MY heart's desires? No idea. I came to realize that I was in a lot of trouble. I had no desires, no dreams, nothing. In the middle of my very busy and "meaningful" life, I remained empty. I was oblivious at the time that I lacked knowledge of my own self and I used to be happy by making sure others were happy. At one point or the other, you come to realize that being a daughter, a wife, a mother does not define YOU - these are only hats we wear at any given point in our lives but the head wearing those hats is also connected to a heart, which lies right were your treasure can be found. If you don't find that treasure, then your heart will be homeless and that's how it will remain until you take the time to figure it all out. Sooner or later, it has to be done.
I am happy to report that lately I have been wanting to win the lotto like never before. This time, I do have a plan for the money. I don't want my husband or my dad to decide what to do with it. I can see clearly what are the things that I would do with my millions. I'm sure now that I have defined what makes ME, Orfa Baez, very, very happy....and I don't need the lotto to do it, it would just take me there faster. Since I have more chances of being hit by lightning than winning the lottery, I must continue working for those crazy things that take me to my happy place, whether they are naive, childish or irresponsible, they provide a home to my heart and where my heart is, I'm sure to find my treasure!
Monday, September 27, 2010
A little background for the record: Frankie has been giving everyone the hardest time at school. This year he is just set on a "civil disobedience" rampage and is out there to defy, defeat and prove to all that he does not need to go to school....he knows already and he is done learning. Yeah, it sounds funny but it's not at all - it's actually pretty frustrating for everyone involved. His teachers are great educators and will go along with any and all strategies we put in place to help them get Frankie to follow their instructions but Mr. Smarty Pants is a hand full. Here is our conversation as we drive to school:
Frankie: "why are YOU taking me to school again? I told you I don't need to go anymore, I am done."
Me: "No, you are not done, you don't know how to read, you don't know how to write and you need to learn this stuff"
Frankie: "I hate school. They make me drink milk at lunch everyday."
Me: "you have your juice in your back pack, you don't have to drink the milk"
Frankie: "....I still hate it. Why are you taking me there...I told you I don't need to go anymore!"
And there it starts again. Every morning, every week, since Sept. 1st, until today.
We know the usual things that work with most kids will not work with Frankie...we just need to try different ones and fail; and try again and fail again...until one day, we try the ONE thing that will light up those wonderful eyes and we can get him on board with us. His therapist calls that "engaging" him but I call it SPARK! Once I see that spark in his face I know we have hit the jackpot - we reached the wonderful Frankie that hides behind that defiant kid - the one that can learn and can teach, the one that has changed our lives.
Really, get him to obey and follow directions? really? that's it? that's the challenge we have this year? Man, and here I was so worried about his social interaction with typical children - I was so scared that he would be the lonely kid who nobody talks to, who nobody notices...well, no worries there, because all the kids recognize him, welcome him, greet him by his name when he arrives, they ask him to join their games and activities - it's just great to see he is accepted and that he is not going to be lonely. Now, If I can get him to WANT to go school, that would be the beginning of a journey that might just change this world. I am convinced he will touch many lives because he already has, now it's just a matter of not getting tired, getting on that van every morning and enduring the same conversation about how he is so perfect and he does not need to go school....
I think this would be EASY-PIECIE-LEMON-SQUEEZIE, Frankie boy!
Wednesday, September 8, 2010
I have been missing from the blogger world...but I have not been missing out in life, fun and SUN. After what we call "the hardest years" of our lives, we figured we would play as hard too! Got on a plane to Miami, jumped in another one to Nicaragua, had a blast - came back to Miami and continue having a great time. I have to say that it was probably the best time I have had since I came to find out what having a great time really is. Our time in Nicaragua was priceless; time with our loved ones, time with my memories and time to build new ones with the kids. I got the relaxation time I needed and the kids got the fun they wanted. Pool, beach, amusement parks waited for us in Florida and we did it all and then some more. This has been the summer of our lives...we celebrated each other, got loads of quality time and recharged our batteries for the next school year. Life is great, God is good and we have each other...what else can we ask for? oh, yes, the lottery
Monday, July 26, 2010
Who said summer days were lazy? More like BUSY! At least that's how they have always been for me until now. This has been a busy summer indeed but it has been the good-busy kind! I have been busy noticing my children and enjoying them. I have been busy learning how to be a kid like them! But now it's time to be lazy....
This is the first summer since I became a mom of three children that I can truly say I am enjoying having them at home. Before, when I was part of the corporate world, we were all rushing through the days in and out of camps, grandma's house and the short one-week vacation we would take to visit Mickey in Orlando or go get some sun at a Florida beach, but it always felt like a part of the same race, the race against time. After moving to Seattle and becoming a stay-at-home mom, I tried to enjoy the summers a little more but "lazy" was never a part of any summer day for us. We were always working hard with Frankie's early intervention team and breaks were not allowed, not even in the summer; if we could stick a third session in the day or even a Saturday one, we would do it, in order to make up for any sick time or to stay ahead of schedule. Still, we would try to make the best of it, sneaking in a picnic here and there, beach walks and even a short trip home but the feeling was still the same...race, race, race against time.
Even though Frankie graduated from his early intervention process, I started out this summer on the same cue, rush, rush, register the kids for this or for that, keep them busy, basketball, swimming, camp, tennis, math camps, whatever it takes to be "productive." Until I came to my senses. I have slowed down now and so have the kids. It's summer! Let the sun in and open the windows! Frankie still has goals to reach but they are so much more enjoyable when they involve a family game! Not only Frankie but Victor and Becca can definitely benefit from learning how to win and how to loose. We can all be more polite with each other and learn how to be kind helpers around the house. This new stage in Frankie's treatment is not only for him, it's for all of us! We continue to grow as a family but this time we can enjoy each other in the process - in the middle of an afternoon lunch at Green Lake or a bike ride along Lake Washington, there are a lot of things we can teach each other.
Lazy summer days have also brought quiet mornings for me...The kids sometimes sleep up to 10:00 a.m. in the morning...what is that? Oh, yes, that's called being completely out of whack with their bed time so they have to make up for lost sleep in the morning but, hey, I am OK with that. It's summer, no worries. As I type this entry right now, I'm aware of the silence, the peace and quiet and the fact that my young boys are still sleeping...no surprise there from the teenage girl but the boys, well, that's a summer miracle in itself. I used to blame them for never being able to get any sleep for myself but I have no excuse now! They are sleeping and I am awake...what's wrong with this picture? Nothing. It's perfect. I am awake in every sense of the word and I have been for a while now...I can look outside the window and take in this bright, beautiful, Seattle summer day and be fully awake. I know this sunny day will not last forever...the more reason why it needs to be treasured, just in case of an eventual rainy day that is sure to come our way, after all, we do live in Seattle.
Monday, July 5, 2010
Everybody says that Victor looks just like me...I personally don't see it but I am glad he does. I have always secretly felt like the illegal alien working as a nanny of my own children because they look nothing like me, well, except for Victor! He reminds me of my brothers in his looks (all three of them!) but more and more I can see myself in his ways. When he smiles, his whole face lites up and it reminds me of someone else...YES, me! It's like looking into a mirror, just better.
Victor is a kind soul who truly enjoys other people; his is such a warm and engaging personality that's emerging now even more because the noise inside is no longer there. I will never regret helping our son find his "better self" with the help of medication. I can't believe I delayed his treatment for months because I was scared to be judged as the lazy mother who didn't want to "work" or handle the hyperactive kid God sent to her. Nobody understands hyperactivity better than I do I'm an undiagnosed/untreated adult with ADHD and I'm aware of it. Everyday is a struggle for me to keep things in perspective and under control. Struggling to finish what I start, in the organized chaos I call MY LIFE, is only my everyday story. I know how painful it can be to have so much noise inside your head that it's impossible to hear yourself thinking...I know how it feels to speak super fast because of the fear that your thoughts will be gone if you don't...it's exhausting! When I was little, my mother had to give me Valium so I could sleep but I don't blame her, it was the 70's, everyone was on something!
All joke aside, as Victor hit four and 1/2, I could see all the signs that screamed ADHD but I waited it out. I figured, I would handle it until it affected his schooling, perhaps it wouldn't, who knew...? but it did. And when his preschool teacher told me I should have him evaluated, I broke down crying. It probably wasn't a big deal in the light of dealing with another child being ASD and going through intense early intervention but at that moment, I just felt like such a failure. I felt like I had neglected my other child. I felt like I was in denial because I didn't want to face that my perfect little boy, the one who was not "broken," also needed my special attention, at a time when I was already overextended as it was. It was a shock but it woke me up. After all the evaluations, we chose to go with therapy instead of medication, it seemed more age appropriate and it worked well, but not for long. After the summer, the big Kindergarten transition sent Victor haywire and there we were again, in front of another teacher, telling us our son was out of hand and we needed to help him...now! I stopped making excuses and went for a specialists this time, an expert on school evaluations. When he told us that our son could definitely benefit from medication we probably took a week to weight out the benefits and the downfalls of medicating him. After almost five months and three different kinds of meds, I'm over the shame of seeking help and using pills to help our child. All of these fears and taboos seemed so worthless when I heard my six-year-old son answer the question his pediatrician asked him after only one month of treatment. When asked how the pills made him feel, Victor said: "It makes me a better me." I couldn't agree more. This better Victor can now draw pictures and enjoys coloring...he had never been able to do that before. This better Victor speaks slowly and coherent, he allows himself to breath between words! This better Victor is proud to be a big boy and it shows when he takes upon tasks he never did before. This better Victor seats still and participates in our meals together. He is still Victor, our charming boy, but he is better in so many ways we never thought possible and his true colors can now shine brighter because all the clouds are gone. I'm sorry I didn't help him sooner because I was ashamed but I'm glad I can see how much better his future can be because he is now himself...only better.
Wednesday, June 30, 2010
Hope is, by definition at dictionary.com, "the feeling that what is wanted can be had or that events will turn out for the best" - now you know where I get most of my information and you are also probably wondering where I am going with all of this. Sometimes, I might question if I have true or false hope but I never question that it's mine and it belongs to me; I can't share it if it's not wanted and I don't have to give it up if I don't want to.
This whole wondering-about-hope business started when I got my 15 seconds of fame last Monday. Autism Speaks decided to publish on their official blog one of my blog entries entitled: "Autism Remission?" They chose to publish me, a regular mom with no official knowledge of pretty much anything, not an expert in any matter and a beginner at everything. There I was, being read by many, many people and getting judged by the good, the bad and the ugly. Hey, public humiliation has never been a problem for me, reason why I choose to write my thoughts on line instead of keeping an obscure journal somewhere in a drawer...besides, I don't even think anyone is reading it anyway! But, it's one thing to have the skin to go public and it's another one to be ripped apart by strangers...all 50+ of them, at the same time, on the same day! Sure, there were many thumbs ups, tons of positive comments but I couldn't get over all the negative noise my blog entry stirred. I was called gullible, mislead, misinformed but mostly, I heard complaints that my writing gave them "false hope." It only took me about 48 hours to process why were these people so insulted with my writing and with Autism Speaks for publishing me; all the while I kept on wondering exactly what is wrong with hoping? Autism Speaks is set out to find a cure for Autism and just this very word, "cure" is enough to ruffle the feathers of a lot of people...but why? because we are so afraid to hope, to really believe that there would be a day when there will be no Autism? what is so wrong with that?
Like I said in my blog entry, which by the way was not a "happy-go-lucky" one like most of my entries are, I honestly can't figure out what we did differently when working with Frankie's early intervention team. We did everything we were told to do and then some but mostly, we hoped. I hoped for the best and prepared for the worst. I hoped hard and long and I'm still hoping. I don't think I'll ever stop doing so....and I'm not sorry for this. I'm done apologizing for the hardships of other families in the spectrum and although I feel their pain, I'm done feeling ashamed because my child's story is different. Every child with ASD, PDD-NOS or Asperger's is unique and successful within their own frame of reference and it's not fair to compare notes - we can only compare hope.
Frankie is no longer ASD, he is PDD-NOS and yes, he is still in the Autism Spectrum. He is better off today than he was two years ago and today he's also worse off than he'll be two yeas from now. His recovery is real and ongoing. I owe nobody an apology for this. My blog is full of small wonders that kept me going through his treatment but it also has its moments of despair; I had to walk through very dark roads and the only thing I had to pull me through was the hope to find the light. If people feel that my struggle gives them hope I celebrate that and to the ones who feel offended by it, I say fight your own battles and inspire yourself, perhaps along the way you can inspire others too.
It's easier to destroy than to build and it's better to have false hope than no hope at all.
Tuesday, June 1, 2010
Frankie understands, as well as a four-year-old is able to understand, how important it is for him to be there for his big brother. What he doesn't understand yet is that this bond will carry them in the future through the good times and the bad times, and an emergency pillow will come in different shapes as they grow up. It will become a place to stay; an ear to listen; a shoulder to lean on; a warm meal; a drink to celebrate or to grieve together; a word of advice. Victor knows that his job as a big brother is to protect and to guide Frankie but even a super-cool-big-brother like Victor needs a loving little brother like Frankie from time to time. There is nothing better in a dark, scary night than a little brother who always has a warm spot for you in his bed and who understands your fears without judging. Childhood memories and the magic they have doesn't have to wear off with the passing of the years because there will always be bad monsters, bad nights and dark times, no matter how old you are but there will always be big brothers and little brothers to face them together.
Good night and dream on...
Wednesday, May 19, 2010
I eat Autism.
I drink Autism.
I live to fight it and to win the battle.
So why am I so speechless? I should be celebrating today's news and jumping up and down with joy. Why do I feel so confused when we've kicked Autism in the butt so early in the game?
Today, May 19, 2010, marks the end for us of two long years of early intervention under the guidance of the University of Washington Autism Center. We moved across the country in 2007 so we could get on a waiting list to obtain an early diagnosis for our son, Frankie, and to learn the next step for this life-long journey. Today, we got more than what we had been hoping for; besides a tentative label for his forehead reading: PDD-NOS (pervasive developmental disorder-not otherwise specified) we also got the news that he was no longer considered Autistic, per say. In order to explain this better, we were told that if our kid had cancer, he would now be in remission - so, we needed to watch it, keep it in check, be aware there could be a regression if a big crisis would arise, if stressful situations involving big changes or social challenges ever took place but for now, it's all good... It's all too good.
So, if this analogy is right, does that make Frankie an Autism survivor?
Personally, this information creates a big paradigm shift for me. I have spent the past 30 months learning to accept the reality of Frankie's Autism and brainwashing myself to deal with it for life....Ever since we contemplated the possibility that our youngest son had Autism, I was scared of the unknown. I made it a point to know. I promised myself that if I knew enough, or in my case, more than enough, I wouldn't be scared to take on the fight. I've always believed that ignorance holds you back and that knowledge is power - so that's what I did: I learned. Autism became my thing - I learned to listen, I learned to process, I learned to research and I became a pro at it. Name the website of the month, I knew it. Name the event of the week, I knew it. I was informed and on top of it. I gave the early intervention of my child the highest priority in this family. Our lives revolved around the parent training sessions, the intervention schedules, the evaluations - everybody was on board and there was no other way. No long vacations were allowed; we had sessions in the middle of snow storms, hail and rain - not a minute went to waste. The efforts paid off but the reward was more than we bargained for.
Then...why on earth am I so shocked at what I heard today?
Perhaps I'm shocked because I never really expected to win the battle?
Perhaps because now I'm left without a purpose, without a mission?
Maybe because at one point this became more about me than about Frankie?
Is it because I feel that we belong in the Autism community and we will have no identity left once we are out?
I'm not sure of the reasons of why I feel so surprised at what the future holds for Frankie...The truth is that I just wished for him to survive and now I'm told that he can thrive and this is hard to process. I am, once again, scared but this time I'm scared to take on this new reality and truly enjoy it because it seems so unreal. Could it be really happening? How did it happen? What did we do differently? Why can't this be the outcome of every family living with Autism? What is that magic ingredient we found without knowing?
So many questions are dancing in my head and are making me dizzy but one thing remains very clear to me; the sky is the limit when you reach for it and there is always a light at the end of the tunnel...Our tunnel was shorter than other families' tunnels but it was indeed a tunnel and it was very dark...but the light at the end is so bright, I might need to wear my shades all day long!
Tuesday, May 11, 2010
Your kids are supposed to love you even if you are ugly...but if they think you are pretty, well, that's an added bonus!
Frankie made my day last Sunday, incidentally it was mother's day, when he added to his usual "I love you " statements - unsolicited AND completely spontaneous - the additional comment of liking my looks. Oh, well, I was flattered but more than anything I was surprised. Frankie looked at me. I mean, he really did look at me! For kids in the Autism spectrum, keeping eye contact is a challenge, no matter how high functioning they are and of course we are always practicing our ABA skills with him (applied behavioral analysis), constantly reinforcing the good, replacing the bad and always on guard to identify, correct and reward....but this time, he caught me off guard... He must have looked straight into my eyes for over a minute and I didn't know what to do with all that attention!
Frankie looked at me, he literally "checked me out" and then he declared that I was pretty and that he loved me for that. For a moment there, I wasn't sure what to say and only managed to get a quick "thank you" that came out both shy and doubtful at the words I just heard. Say what? Me, pretty? Yeah, I could say I think of me as a "pretty" good mom, a "pretty" smart woman, a "pretty" savvy shopper and perhaps a "pretty" good cook but when I use the word "pretty" before another word that stands for a role I must perform, it usually means I am not great at it but just good enough. Frankie taught me that day that I must stop setting the bar so high for myself because "pretty" doesn't have to be a minimizing word to define my abilities or my achievements; why can't it just be an adjective that could, by itself, define ME. I guess pretty can stand for just...pretty.
I have heard before that children and drunks always tell the truth, so I'm going to take Frankie's word for it and accept that I am pretty, just pretty, because my child actually saw ME and thought that I was, well, a pretty girl and that's the best mother's day gift I could ask for!
Friday, April 2, 2010
April 2nd is the day designated as the World Autism Awareness Day. It sounds like a BIG thing and it is...but I have to confess that I've had my issues accepting Frankie's condition and I personally have been passive about joining efforts with organizations like Autism Speaks. Yes I have. It has been mainly because I am afraid. I am afraid of getting hurt. I am afraid of being exposed. I am afraid of changing minds and souls. Days like today make me uncomfortable because although they do a lot of good and create a lot of noise, I can't help feeling like our family is part of a "special group" - sadly, a misunderstood one. I am afraid of the rejection I have already experienced and it's ugly. It's really ugly. But hey, my Frankie loves "the whole world" and the whole world should love him back. I am thinking they will, if I take the time to write and to tell our story today, on this day of awareness and change.
Today is one of those days we tend to single out by themselves in our calendars but it shouldn't be this way...Christmas is not just one day and neither is Easter; if you are a Christian, you celebrate your faith everyday, not just on the high holidays. If you are Autistic, you are not Autistic just one day but the whole year, and every year for the rest of your life. True, to have a worldwide day for Autism awareness is indeed a beginning and it's necessary, still, to truly understand Autism is very difficult. Once you have met an Autistic child, well, you have met ONE Autistic child. They are all unique, working at different levels, reaching different goals and struggling with different challenges, but one thing they do share is to be misunderstood and labeled. This is why awareness is so important but so is tolerance and most of all is compassion.
I have read many blogs of parents with Autistic children over the past two years and I know that mine is nothing special but it's my family's personal story. Our personal struggles. I write to educate to awe and to inspire. I write so one day, a parent who just heard or will hear these devastating words "Your child has Autism," can dare to dream and believe that it doesn't have to be devastating. It really doesn't. I heard once that "if it doesn't kill you, it will make you stronger" - and this is true of living with Autism. You have to grow and you have to learn; you have to learn first in order to teach and when you become the teacher, you are the one who learns the most.
I am not going to sit here and type all the wonderful things I have learned while teaching Frankie the social skills he needs to survive. I am not going to tell you either that it hasn't been hard to read the ignorance on people's faces when they don't understand his struggle. I am not going to talk about the sharp pain I feel when I see the rejection from adults and peers because they don't understand...because they don't know. No, those are not things that I want to talk about because I would never finish this blog entry. What I do want to say is that if kids like Frankie can learn, so can we. "Typically developing" children and adults are also taught; we are taught the necessary tools for life and unfortunately we are also taught to judge; we are taught to reject; we are taught to shy away from what's different and difficult. It's time to "unlearn" these things and open our hearts to new beginnings.
Today is a day that stands for change. We all have the duty to learn and to teach. We are all teachers and we are all students. Let's change the world together for our children, Autistic ones and not - Perhaps then, we can truly say, like Frankie did this morning, that we do love each other and we love the whole world too...!