It’s Friday and that means it’s time for Sunday Stillwell’s Special Needs Ryan Gosling! Check out all of the hilarious bloggers who are participating at extremeparenthood.com
That Ryan is always thinking up the best ideas… of course Autism Awareness Month should have one day dedicated to all of us hard working & devoted autism mommies! We need a little TLC every now and again, so we can keep advocating our asses off! Just name the day Ryan & I am in…
It’s Autism Awareness Month & they’re running a BOGO special on smokin hot autism advocates. And they’re super easy on the eyes to boot… who’s buyin?
And how sweet that Ryan wanted to help us “Light it up Blue” for Autism Awareness Month. But alas, he ran into a little trouble!
And here is the reason we are lighting it up blue throughout the month of April… My sweet Yael.
And her amazing sisters (Noa & Leora)… who love, accept and celebrate their sister for exactly who she is! They light up my world every day!
It’s Friday!! And that means it’s Special Needs Ryan Gosling Day!
Bless you Sunday Stillwell for this much needed weekly dose of laughter! Friends, you need to check out all of the posts at extremeparenthood.com
This week Ryan is taking on the IEP and this nice Jew “ish” boy is showing off his more sarcastic Yiddish side! Yes, even a mensch (good, kind human being) like Ryan can get pissed off when the schools start messing with our services…
Now, I’ll admit that in the early years of Yael’s education, when we lived in Connecticut, IEP meetings were a very positive experience. From her time in our town’s special education preschool, through her first grade experience, the schools provided her with every possible service as well as her own facilitator. If only we truly knew how good we had it. Damn that 20/20 hindsight!
When she was entering 2nd grade, we moved down here to Georgia and soon enough they began to pull service after service from my girl. She no longer qualified for Occupational Therapy because she could write. Never mind the sensory, visual tracking, visual perception & fine motor planning issues that she struggled with. And Physical Therapy? Well, why would she need that? She could walk around the school! Never mind the low muscle tone, gross motor planning and coordination issues that she contended with daily. And placing her with the right teacher? The one whose teaching style would be most conducive to her learning style? The one that offered the most structure? Well, why did she need that? She just went into the grade level inclusion class with 5-6 other special needs children and 18 “typical needs” students. The one that was co-taught by a special education teacher with little to no experience teaching a child with autism. That way, I got to spend every other day putting out fires on the phone, via email or in person. Waking up each day sick to my stomach with anxiety & going to bed feeling the exact same way.
Finally, we had enough and left the public schools. We bounced around a bit, but we have finally found the right school for Yael. We gave up on the idea of mainstreaming & put her in a school where she is a square peg happily fitting into a square hole. It is a
big huge tremendous financial sacrifice for us to have her in private school. I joke with my husband daily that he’ll just have to die on the pulpit at the ripe old age of 100 and I’ll be hobbling down the preschool halls with my cane, still teaching those children their ABC’s and 1 2 3′s. But, that’s okay. We’ll renew our vows at our 50th wedding anniversary still singing… “Even though we ain’t got money, I’m so in love with you honey.” That’s all that matters right?! Savings, college funds & retirement planning is soooo overrated anyway!
Perhaps had Ryan Gosling been around to serve as our advocate things might have turned out better. But alas, he was spending some time in Eastern Europe, brushing up on his Yiddish. Still, this is what I imagine he might’ve been thinking if he had come to one of our public school IEP meetings here in GA. And lest you have no idea what Ryan is saying, let me help you out with a little Yiddish translation… It is important that when you get to chutzpah & tuches, that you give the “ch” sound the proper Yiddish flair. Pretend you’ve got to clear your throat, so you can cough up some phlegm… I know, sounds gross but Bubbie & Ryan will not have you butchering their language.
bupkis~ less than nothing (You know, the minimal amount that the school offers your child no matter what their diagnosis or level of functioning. We call it low balling around here.)
kvetch~complain (As in, what the schools do when you dare to step up and fight to get your child all of the tools they need in order to be successful. Really, how dare you?)
chutzpah~nerve (Well, this one’s pretty self-explanatory cause if you’ve got a kid with special needs, you encounter this one on a regular basis.)
shmuck~ can refer to a man’s genitalia (no, I won’t actually say the word… I am the rabbi’s wife after all, so let’s have some decorum) & it can also mean idiot or fool (I know, you’ve never encountered anyone like that at an IEP meeting~insert sarcastic tone here)
tuches~ ass (Nuff said?!)
And… just for fun
It happened today. For the first time, my daughter used the word “weird” to describe herself. It happened in the midst of a less than stellar morning and once again, she and I were locking horns over the issue of self-care & responsibility. The details don’t really matter, what matters is that time was short, patience was shorter and suffice it to say that nobody will be nominating me for “Mother of the Year” anytime soon.
Conflict escalated and the tears began to flow. I yelled & she cried. So, as my daughter and I later sat, trying to regain composure and talk things through calmly, I asked her what she was feeling. And then it came, that moment I had been dreading. She told me that she was weird, because she was different from other girls and has a hard time remembering all of the things she needs to do to take care of herself. She told me that autism makes it harder to be a teenager and she hates the way that makes her feel. She feels like she is always getting this piece of her life wrong. She said it again, I’m weird, I’m different and I want to know why! The tears were streaming down her face, and as I looked into her eyes, my heart just ached.
I feel like crap. I could have handled things differently. I own that. Hindsight is 20/20 as they say. I feel like I am trying so hard to give her the tools that she needs to navigate this piece of her pubescent, young adult life. But I can’t help but feel like I am fucking things up royally some days. My daughter called herself weird this morning, and it happened in the midst of an argument that she was having with me. It wasn’t with some other kid, or some ignorant bully somewhere. It was my lack of patience again, my inability to step back and take a breath before speaking, that started this whole thing which spiraled into this scene.
What could I do? I held her face in my hands and told her, over and over again, that she is not weird. Yes, she is different. But different is not less than, it is not bad, it is just different. I promised, as I have before, to try to approach this piece of her life with a greater sense of patience and awareness. She promised to try to stay on top of her lists & schedules, the tools we have given her to organize her self-care. She told me she feels like she keeps letting me down because this is all so hard for her. “I’m trying mom. I’m really trying my hardest,” she said. “It’s just so much for me to think about & I get confused and overwhelmed.” I know that, I told her. Truth is, she is not letting me down. I am letting her down…
People think that because my daughter falls on the “high functioning” end of the spectrum, that autism doesn’t impact our lives, her life, on a daily basis. They are wrong. It is an ever-present force in our home and in our world. But sometimes even I get caught up in the moment and I allow myself to have the same expectations of her that I do of her sister, only 14 months younger. I allow myself to expect that she will eventually internalize all of the things we are trying to teach her about self-care, when there is a good chance that she will not. She may learn to follow the routine in time, and perhaps she won’t even need the lists or schedules, but that doesn’t mean it becomes inherent. Memorization and internalization are not the same thing. I get angry that I need to keep going over and over the same things. But so what damn it! My kid has autism. And if she needs to learn something by rote drill & practice, then I need to conform my way of parenting, even when I’m tired, rushed or out of patience. Or maybe I need to let some other ball drop out of the air at that moment, instead of coming down on her. Isn’t that how she has learned everything else in her life?
Sometimes I think my need to have her “get” this stuff is directly connected to all of the fears I have for my now teenage daughter, and her future life of independence. Will I still be making lists for her when she is in her twenties, thirties & so on? What kind of independence can she have if she can’t manage taking care of herself, her physical needs and her body? These are the fears that lurk in the back of my mind and in the deepest pieces of my heart. I try not to visit them too often. What’s the point? There are no answers to those questions right now. Besides, that’s my crap isn’t it?
It broke my heart to hear her call herself weird this morning. And to know that the feelings of being overwhelmed & confused were only exacerbated by my epic failure of patience & perspective. She has always proudly embraced her autism, but I knew the day would come where she would begin to recognize the ways in which it makes her life a lot more challenging on every level. I hope she will be able to hold onto that positive sense of self, even with that awareness. But more than that, I am sitting here hoping that I won’t be the one who screws that up. Because today, I feel like I did just that.
My daughter has recovered and has gone about her day. Me, well, as I said earlier, I am not expecting any nominations for “Mother of the Year.” I’m just hoping I can do better tomorrow.
It’s that time of week again. Special Needs Ryan Gosling Fabulously Funny Friday. I am in serious need of some laughs this week, so the timing is just perfect. Check out all of the blogger entries at extremeparenthood.com you will truly laugh your tushy off!
Okay, so this week’s picture totally reminded me of “Fiddler on the Roof.” Just throw on a tallis (Jewish prayer shawl) & a kippah (Jewish head covering) and Ryan could burst into his rendition of, “If I Were a Rich Man” at any time. Oh wait… he is a rich man. Okay, well that is neither here nor there.
Do you see the resemblance? No? Well, the pollen count in Atlanta has been wreaking havoc on my contacts, so it could just be me. But I’m going with it people…
What else could I do but follow up my first “Oy Girl” meme with another? Once again, Ryan is channeling his inner Jew, and this time he is bringing bubbie (an endearing Yiddish term for a Jewish grandmother) with him. I’m not sure that my bubbie would appreciate a gluten-free version of her gefilte fish. In fact, she might find such an idea a bit meshugina (crazy), but I hope she’ll have a good laugh about it from her place up in heaven. And, for anyone who truly wants to bring this dish to their Passover table, here’s a recipe you might want to try. http://www.elanaspantry.com/gefilte-fish/ Ryan says we need to keep our recipe in the family Oy Ryan, you really are such a mensch ( a good human being)!
And if you want to host a special needs friendly Passover seder, check out this link (http://blog.friendshipcircle.org/2011/04/15/a-sensory-friendly-passover-seder/) It’s filled with lots of great insights & ideas. Ryan & I would love to join you… we’ll bring the fish! Read more »
I hear ya Ryan! I hear ya!! Let’s talk about it over a bowl of chicken soup & a bagel with a shmear of cream cheese.
That which is hateful to you, do not do unto another: This is the whole Torah, the rest is commentary. Go now and learn it. (Hillel)
As I stood in Shabbat services with my daughters this morning, this line in Pirkei Avot (Ethics of the Fathers) stood out to me. I have read it many times over the course of my life, but today, for some reason, it stayed with me, resonating on a deeper and more profound level than it had before. Sometimes it is as if God knows just what it is that your soul needs in a moment of prayer & if you listen to that still, small voice within, you’ll find your way there.
There have been many beautiful blog posts and videos made of late asking people to stop using the word retard. The efforts are being spearheaded by r-word.org and their campaign “Spread The Word To End The Word.” I have personally signed the pledge and shared the site and mission with others. I believe that words have power. They can be used to build, to strengthen, to support, to learn, to educate and to share. They can also be used to belittle, dehumanize, weaken, destroy, promote ignorance and marginalize those already living on the periphery. The “R” word does the latter. That is the truth, plain and simple.
But not everybody gets it. “It’s just a word,” they say. “I don’t mean anything by it.” “What’s the big deal?” And so along with the many profound and eloquent pieces that have been shared through blogs, on Facebook, Twitter and more, I’d like to offer this simple truth. These are words that resonate with me as the mother of a child with autism, as a person of faith and as a human being. It is the Jewish version of that Golden Rule found in every faith. That which is hateful to you, do not do unto another. This is the whole Torah, the rest is commentary. Now go and learn it.
Speak of others as you would like them to speak of you. Treat others as you would like them to treat you. Choose the words you would have others choose when they speak of you, your loved ones, your friends or your family. Our words matter.
This should be part of our moral compass. We teach it to children from a very young age. In my own preschool, where we lay the foundation of Jewish learning, we talk about using words of chesed (kindness), kavod (respect) and ahava (love). We teach these as an extension of the values that come with being part of a kehillat chesed (a caring community). I have no doubt that similar messages & values are taught in faith-based preschools everywhere, each cloaked in the fabric of that particular faith and its teachings. Our youngest children seem to understand & embrace these ideals. Where then does it get lost?
That which is hateful to you, do not do unto another. This is the whole Torah, the rest is commentary. Go now and learn it.
Sometimes it is the simplest of truths that can be hardest to learn. But as we encounter the commentary of our lives and of our faith, these are the truths that define who we are. They reveal our neshama, our soul, not only to God, but to our fellow human beings.
May the words of my mouth and the meditations of my heart be acceptable to You, Adonai (God) my Rock and my Redeemer. Amen.
Alone we can do so little; together we can do so much (Helen Keller)
I’m all registered and ready to reunite our team for the 2012 Georgia Walk for Autism. Our team name, “The YaYa’s” is inspired by Yael’s nickname, given to her when she was only days old.
Every year I look forward to the walk. Some might wonder why that is. I’ll tell you…
First, the walk reminds me that there is strength in numbers. Looking out at a sea of people, numbering in the thousands, reminds me that our family is far from alone on this journey. The collective strength of the families, friends, educators & professionals that walk, demonstrates that we truly are a force to be reckoned with. Sometimes it’s easy to lose sight of that when you are immersed in the trenches day to day. Truth is, we’re all part of something much bigger than ourselves & our own families.
Second, some might expect that an event like the walk would be filled with melancholy people full of sadness and a sense of defeat. Perhaps they envision a large group of self-professed victims, sitting around holding a gigantic pity party. That could not be further from the truth. The feeling of hope, pride and unconditional love and support is palpable. T-shirts profess team pride, often championing a single child or loved one who lives with autism. Phrases like, “Autistic Kids Rock” or “I am not a Tragedy” tell the world that though we want answers and a greater understanding of autism, we sure as hell don’t want to be pitied or appeased. We are proud mothers, fathers, sisters, brothers, friends & family of incredibly unique and amazing human beings who happen to have autism. Some may walk for a cure, others to raise money for advocacy, research & intervention, and still others walk simply because they want to stand up and be counted. And when we walk, it is with our heads held high, our chins up and our hearts full.
Third, from the moment that we step into the area where the walk is held, Yael can look around and see kids just like her. So much of her life she lives in the minority. One of the few kids in her school, at her synagogue, in her neighborhood or at her camp, who has autism. But at the walk, it is the total opposite. She sees younger kids, older kids & adults, all living with autism. She gains a greater understanding of the spectrum upon which she lives and gets to meet some of the neighbors who live there with her. It may not sound like much, but to her it is one of the rare & precious moments where she gets to feel as if she truly fits.
Fourth, let’s be honest. It is easy to feel drained as the parent of a child with autism. There is so much to do from advocacy to therapy, helping your child develop social skills and so much more. Sometimes I feel like I am running on vapors and my gas tank is on “E.” After spending a morning at The Georgia Walk for Autism, I always feel like I have been given just the boost of energy that I need to keep on going. I feel empowered, strengthened, emboldened and ready to keep doing what I do. I am reminded why I started this blog in the first place. It isn’t simply to write down my family’s experience with autism, but to try to raise awareness, encourage advocacy, inspire people who may just be starting out on this journey or simply to connect with another human being and let them know they are not alone. But, I’m the mother of 3, the wife of a busy rabbi, a preschool teacher and a blogger. I don’t always feel like I am doing any one of those jobs particularly well, and when I am running low on time & energy, it gets even harder to strike a balance. While I would never turn down a good massage, a day to myself or the ability to eat tons of chocolate without gaining a pound, none of these things gives me quite the same boost as an advocate & parent of a special needs child, as this walk does.
And finally, I feel as if this walk is our family’s chance to stand together, to give back and to pay it forward all at the same time. We stand together as one team, inspired by our captain, Yael. We are a mother, a father and two sisters who are united in our desire to honor Yael, demonstrate our acceptance, love & pride in the person that she is and the lessons she has taught us. We give back to those who helped Yael get to where she is. We know with each step that we take that she would not have come this far without the devoted educators, therapists, friends and family who have accompanied us on this journey. They are often the unsung heroes, the behind the scenes talent that never take center stage. But we know who they are. We walk for them as well. And we pay it forward with the money we raise. We help to fund advocacy efforts, research and interventions that are so incredibly important not only for family’s like ours, but for all of those who live with autism and those who love and care for them.
So, if you happen to be in the Atlanta area on Sunday, May 20th you should come check out the walk at Atlantic Station. If you want to join our team, we’d love to have you. The more the merrier. And if the spirit so moves you and you want to support our team, any donation big or small is sincerely & profoundly appreciated. And finally, if you’ve never participated in one of the nationwide autism walks, I sure hope you’ll consider doing it sometime. It’s a beautiful and powerful thing to be a part of.
The PDD-NOS brand may be discontinued after May 2013. Please consult the DSM~V at that time to check out the newest & trendiest ASD labels. They are sure to make you spin, stim & want to wear ‘em in…
Thank you Sunday Stillwell of Adventures in Extreme Parenthood for starting the Special Needs Ryan Gosling trend… Because sometimes you’ve gotta laugh at life on the spectrum! Check her out at www.extremeparenthood.com
Yael ran in her first track meet ever yesterday. I wasn’t there to see it. The meet was in the city and I couldn’t juggle the schedule of my other girls to be there. Thankfully my dear friend Laura was there and captured a few moments on video for me to see.
Yael ran in the 100 meter dash and the 1600 meter event. She finished dead last in both events. I watched the video of her in her final lap of the 1600 this morning and you know what? I was grinning from ear to ear. Even better, when she called yesterday to tell us about the meet she told us that she was so proud of herself. She came in dead last. She didn’t care. She ran the whole distance without stopping. She didn’t give up and she crossed that finish line. That was what made her proud. That was how she defined success. She was tired and it was hard, but she kept on going with her teammates cheering her on along the way.
She doesn’t give up this kid of mine. She never has. Her life has been a long distance run, with a hell of a lot of bumps in the road. But she doesn’t focus on keeping up with the pack. She just puts one foot in front of the other and keeps on running, pushing & striving. She wants simply to do her best. No more & no less…
I’m a proud mama today. Maybe other parents won’t get how I can celebrate a last place finish. What’s the big deal? But if you are raising a kid with special needs… you get it. She finished. And she imparted a little wisdom along the way. On those days when I want to throw my hands up in the air, throw in the towel and simply cry UNCLE, I’ll think of that video footage of my girl coming around the last lap and pushing her way to the finish line… and I’ll dust myself off and keep on going.
Talent will not; nothing in the world is more common than unsuccessful men with talent.
Genius will not; unrewarded genius is a proverb.
Education will not; the world is full of educated derelicts.
Persistence and determination alone are omnipotent.” (Calvin Coolidge)
“Racing teaches us to challenge ourselves. It teaches us to push beyond where we thought we could go. It helps us to find out what we are made of. This is what we do. This is what it’s all about.” (PattiSue Plumer)
I just got back from a two mile run with Yael. I can’t even believe that I just typed those words onto my screen. The fact that she played basketball this year was enough of a surprise, but now my daughter has joined the track team. I’ve said it before, this is the kid that always hated PE and certainly never ran voluntarily. The kid with the stiff gait, who struggles with motor planning and low muscle tone is now going to be running long distance for The Cottage Cougars.
As we ran around our neighborhood, I found myself thinking about the parallels between distance running & life with autism. When you are standing at the starting line, the road ahead can seem so long. When you think about the terrain you must cover to reach that end goal, it is inevitable that some doubt and uncertainty comes to mind. Will I be able to do it? Will I make it through? What if I falter? Or worse, what if I can’t finish? And so it is with an autism diagnosis. You stand at the starting gate of life on the spectrum and you wonder if you’ll be able to make it. The weight of the world seems to be bearing down on your shoulders and the course you thought you’d be running, has suddenly changed! But the starting gun goes off and you simply begin, one step at a time.
Distance running is all about endurance. You need to pace yourself and take it slow or you’ll burn out halfway through. Life on the spectrum demands the same. It is a long journey filled with unfamiliar terrain. You need to start off slowly, taking in the diagnosis and making a plan. What are the most pressing needs that your child has? Where should you begin? What therapies should you seek out? How much does it all cost? And how will you pay for it? Slow and steady, slow and steady, that is the only pace. You remind yourself to breathe. Then put one foot in front of the other until you start to find your stride.
As Yael and I took our second lap around the neighborhood, she began to run out of steam. So, we set short term goals, knowing that each one that we met brought us just a little closer to the finish line. Make it to the top of the hill, the stop sign on the corner & the mailbox up ahead. When you have a child with autism, you learn to celebrate those same small benchmarks, the little milestones that others often let go by completely unnoticed. The first time Yael was able to drink from a real cup at age 3, and when she learned to use a straw just a few weeks earlier. The first time that I asked her how her day was, and rather than echo my question back to me, she answered me with that broken gibberish that only I could understand. The first time that we were able to sing “Happy Birthday” to her without it causing her to have a total meltdown. She was 5 years old and I sang with tears streaming down my face. The first time that she overcame her paralyzing fear of animals and touched our neighbor’s cat & pet another neighbor’s dog, in the 3rd grade. Those were the benchmarks that let us know we were moving ahead, even if the finish line was nowhere in sight. Hell, I don’t think that finish line even exists. But we strive to get closer and closer to each goal. Then we stop, take a breath, stretch, rest & set out upon the next course… toward the next goal.
Running alongside my daughter was truly the highlight of my weekend. I would not have dared to dream of such a moment when we stood at the starting gate of this journey ten years ago. But lap by lap, my kid keeps on going. Sometimes her stride is strong and at other times it is timid & uncertain. But she refuses to stand still and simply give up. I admire her endurance, her perseverance and her courage. The finish line is always moving when you live life on the spectrum. Just when you think you’re about to cross it, the course changes and you have to jump over new hurdles and push yourself to keep going the distance. You can not measure your child’s success by looking at the strides of others. They may run laps around your kid, but as long as your kid is moving, they are progressing and that is what makes them winners.
So next weekend, Yael and I will lace up our running shoes again and go a few miles around the neighborhood. And just as I have since the day we got her diagnosis, I will encourage my daughter to dig down deep, push a little harder and go just a little further. Because I know, with every fiber of my being, that she has it in her to go the distance.
“Believe that you can run farther or faster. Believe that you’re young enough, old enough, strong enough, and so on to accomplish everything you want to do. Don’t let worn-out beliefs stop you from moving beyond yourself.” (John Bingham)