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What a Neurotypical Teen Sees; What an Autistic Teen Wants Them to See

3/27/2019

5 Comments

 
This post was created with the help of my 17 year old son Ryan, who is autistic. Thank you Ryan for offering your insight as you continue to take on a world that you struggle to understand and that struggles to understand you day in and day out with such courage.

As a mother of a teenage son with autism, I often wonder if the reason my son spends so much time alone, is because the world, especially the world of teenagers, doesn't understand him. Sure, my kid struggles to understand some of the social rules of teenagedom, due in part to his autism, but, how can we expect neurotypical teens to interact with our autistic teens if we don't educate them on some of what they may see?

Ryan and I came up with a few examples of what a Neurotypical Teen (NT) might see and what an Autistic Teen (AT) might want them to see:

NT: Oh, that autistic kid is sitting by himself again. Guess he prefers to be alone.
AT: Yeah, sometimes I’m afraid to take a risk socially because I'm worried I will mess up, and sometimes I do need a break from people, but, sometimes being alone is lonely.
 
NT: Check it out, the autistic kid is talking to himself again.
AT: I kind of am talking to myself, (it's called "scripting"), but, that’s because I am remembering a funny movie, meme or YouTube video. If you ask me, I might share it with you and make you laugh too.
 
NT: Uh oh, he’s gonna lose it, check out how fast his arms are flapping.
AT: I bet when you get anxious or excited your legs bounce up and down or you twirl your hair or bite your nails. Same.
 
NT: You know, that autistic kid never responds and he hardly says anything.
AT: Sometimes it’s hard to turn my thoughts into words, but, that doesn’t mean I’m not listening or that I don’t have something to say.
 
NT: That dude doesn’t really seem to get me or how I’m feeling.
AT: Sometimes I struggle with reading the emotions of other people unless it’s really obvious like you are laughing or crying. I do have a lot of empathy though, once I know what you are going through. You just might need to share with me how you feel.
 
NT: Sometimes that autistic dude is a little too honest.
AT: You are right, I am honest. It doesn’t occur to me to lie, even if a lie might spare your feelings. I don’t mean to hurt you with my honesty though.
 
NT: That autistic kid's parents must never take him shopping, because he wears that same shirt ALL THE TIME!
AT: You’re right, I do wear this same shirt ALL THE TIME, but, that’s not because my parents won’t buy me new shirts it’s because I feel more comfortable when things remain the same and there is nothing more comforting than a worn in t-shirt.
 
NT: You know, it’s hard to trust someone who doesn’t look you in the eye.
AT: Eye contact is hard for me, it can be very distracting and upsetting to look you directly in the eye. It doesn’t mean that I’m not listening or that I am not trustworthy.
 
NT: Wow, that autistic kid is so weird.
AT: If “weird” means different, you are right, but, how boring the world would be if we were all the same! Take a chance to get to know me, you might find we have more things that are the same than different (“weird”).
 
NT: Wow guy, I was JUST trying to give you a pat on the back to let you know you did a great job, you didn’t need to shove me.
AT: Thanks for feeling proud of me, but, sometimes unexpected touch, like a pat on the back, doesn't feel good to me. Just telling me you think I did a great job will make me feel happy.

NT: I don't know how to talk to that autistic kid, I'm always afraid I will say or do the wrong thing and freak him out.
AT: You might say or do the wrong thing, but, so do I, that's what makes us more alike than different. Even if we both say or do the wrong thing, I promise I will always remember that you tried.

NT: Wow, I just talked to that autistic dude, and he is really pretty cool!
AT: Told you.

NT: (Days later): Hey Ryan!
AT: Hey dude! ("Finally.")
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Photo is of my son Ryan and some Neurotypical Teens who see him.
5 Comments

My Wish(es) For You This Mother's Day

5/10/2018

1 Comment

 
It's been almost 13 years since we first heard the word "autism". My son has come so far since then, and so have I. I remember all those years ago, the guilt, the worry, and the ignorance, I remember it well. It took me some time, ok fine, a lot of time, to get from there to here, here, where I am today. I am so thankful to my son who grabbed my hand and helped move both of us forward.

So this blog is for all you mothers who have just arrived to this new world of autism. One day you too will be "here", but, while you still linger "there" these are my wishes for you this Mother's Day;

1. A day filled with love, even if that love looks different than you expected.

2. A day without racing thoughts of how, when and why.

3. A day without scheduled appointments, routines and researching what to do next.

4. A day to enjoy what is and not worry so much about what will be.

5. A day absent of comparisons. Theodore Roosevelt once said, “Comparison is the thief of joy.” Teddy was spot on, so today, no comparisons, just joy.

6. A day without guilt and should haves, could haves, would haves. Guilt is Comparison's accomplice when it comes to stealing joy. Lock them up today.

7. A day for you to see your child like you did before you heard "autism". That child is still the same, that child is still there, so look. Look now.

8. A day filled with the wonder of seeing the world through your child’s eyes in a way you never have before. It can be a heartbreakingly, funny, difficult, awesome and beautiful world, but, it is now up to you to enter it. Walk through that door with your child today. They are waiting for you.

9. A day to appreciate and embrace neurodiversity. Imagine how boring the world would be without it?!

10. A day to be grateful for your support system of family, friends and other moms on this similar journey. You will need all of them (and wine), let them in.
 
Oh, and one last thing on Mother’s Day, and every day, as you travel this new journey with so many mothers who have come before you, I wish for you the gift of acceptance. I truly believe the best way to receive this gift, is to get to know autistic individuals, no one can offer you or your child more insight then they can. Remember, without accepting what is, you and your child will never get to what, and most importantly, who they will be.
 
And finally, my last wish for you is that no matter the day, you never, ever give up hope.
 
Happy Mother’s Day!

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Grateful on Mother's Day, and everyday, to be their mom.
1 Comment

"I'm Not Going To Be So Autistic"

4/21/2018

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​You know how we have those moments that no matter how much time passes we know we will always remember, not just the moment, but, everything about it? Where we were, what we were wearing, who we were with, etc. The day we heard the word “autism”, I remember everything about that moment. The smell of the rain that had just fallen, the shirt I was wearing that was sticking to my back due to the warmth of the day and my anxiety, the location of the empty garbage can in the psychologist’s office that I could puke in if necessay…I remember all of it. And I also remember thinking later, mostly because I was uneducated, I was scared, and I was in new territory, that there would probably be very few moments in my lifetime that would cause me such heartache and worry than that moment did.

Well, I just had another one of those moments (in my kitchen, on a cold day in April, wearing a Shenandoah University sweatshirt, with Ryan) and it hurt my heart so much more than that moment almost 13 years ago. The moment began with these words: “And this year I'm not going to be so autistic”. The words came from my beautiful son’s lips as he smiled with pride at the thought of not being "so autistic" and I was sickened looking for that psychologist’s garbage can again.

We were talking about tech week for Ryan’s HS musical rehearsal. Two of the rehearsals would be anywhere from 8-10 hours long, so, that meant they would run through the dinner hour. Of course, dinner was provided for the kids, but, since Ryan has a limited diet due to his texture sensitivities, I take dinner to him. Last year, we got the timing off and his milkshake was melted and his burger and fries were cold, and he was terribly upset, so I had to go get meal number 2. Some moms said to me, “Wow. You are a better mom than me, I wouldn’t have gone back twice”. I’m not a “better mom”, I'm just a mom traveling a different path than those moms.
 
In order to avoid another mishap like last year, Ryan and I were in the kitchen trying to come up with a plan, discussing different ideas for meals and how we could time it better this year when "the moment" occurred and those words were spoken with such pride, “And this year I’m not going to be so autistic.”

No. Just no. No, no, no, no. Dammit, NO!

Trying not to be “so autistic” is not something my son should have to ever strive for and saying it should not make him smile and feel some sense of accomplishment. Yes, it's ok if he is proud that he is more flexible, or takes pride in advocating for himself, or is pleased that he is planning ahead a little better, or feels courageous enough to try a new food, but, he should never have to feel good about being other than who he is...and being autistic is intrinsically how he sees, feels, understands and interacts with the world.
 
Back when Ryan was officially diagnosed, it was under the DSM-IV, so his actual diagnosis was Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS). “Pervasive” is the word you must understand. It means that autism impacts Ryan's neurology and how Ryan sees and interacts with the world. Autism is prevalent and inescapable in all areas of his life so he should never have to feel like he can be more or less autistic. His neurodiversity is an inherent part of his identity and he cannot be separated from autism any more than he can be separated from the color of his skin. He cannot separate how he exists from who he is and he should not ever think he has to.

Do most of you women out there wake up regularly and think, “Today I’m not going to be so female” or do you just get up and go about your day being female? Have any of you guys ever decided when the new year rolls around that this is the year you are going to “not be so male” or do most of you dudes start the year off with a new plan to be healthier, happier, but, still inherently male? The gender you identify with is intrinsically a part of who you are and that’s what makes you, you, so trying not to be who you are would be terribly uncomfortable and probably not something most of us even think about and certainly not something anyone expects of us.
 
For those of you who may not believe that autism is pervasive and intrinsic to the autistic person and see autism as a “disability”, let’s look at it this way then, do we expect people who are visually impaired to decide this is the year, this is the day, this is the moment that they should try and see better? Does the world think people with a physical disability should be less physically disabled today than they were yesterday? These individuals can’t look at their parents and say, “And this time, this year, this day, I’m not going to be so physically disabled” and Ryan and other individuals with so called "hidden disabilites" like autism, shouldn’t have to say that, try that or think that either.  No one's disability or label should "define them", but, for the autistic population, their neurodiversity impacts all aspects of who they are and how they go about living their life and they should not ever have to take pride in trying to be someone else.
 
The reason Ryan's words, “And this year I’m not going to be so autistic” were such a profound moment for me was because in that moment I realized that there is still so much more understanding and acceptance that is needed, both for my son and the rest of the world. His pride in trying not to be "so autistic" is not for him, it's for the neurotypical world who still fail to accept and respect neurodiversity. No one has the right to deny who my son is and he should never take pride in trying to be more or less "Ryan". Hopefully, the more we educate others, the more accepting the world will become and then maybe one day Ryan will be more accepting of his neurodiversity and never feel like he shouldn't be "so autistic" when his milkshake melts and his fries are cold because honestly, as someone the world deems "neurotypical", cold fries piss me off too.
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Ryan, being exactly who he is and a mom who is incredibly proud to call this kid her son.
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Why My Son's Words Matter So Much More Than Mine

3/28/2018

0 Comments

 
I will never fully understand autism because I am not autistic. To say I "get it" is not truly accurate. And this is proven to me time and again. As much as I long to get inside my son's brain to see what he is thinking, how he is feeling and how to help him when he is struggling, I will never quite understand how autism impacts his life. That is why when we have moments where he shares any or all of those things, it feels like a gift he has so graciously given to me, if only for a moment.

Just last week, there were two occasions where he really let me in and helped me to see him, I mean really, see him. One of those occasions happened when we went to see my best friend's little girl as a hyena in her first musical performance of the The Lion King.  She wanted Ryan to be there, since in her beautiful 9 year old mind he is an expert as a high school theatre kid. And he wanted to go because he loves her and loves being seen as an "expert". 

Well, the audience was loud, kids behind us were talking and kicking our seats and it was hot. Like really hot. When our gorgeous hyena asked Ryan if he liked the show he barely mumbled a "yes" and there was zero excitement in his voice. I worried  that this sweet girl, who understands autism more than most 9 year olds do, would be hurt by his lack of exuberance and quite honestly, I was a little irritated, but, I didn't let Ryan know just how irritated I was.  

The next day, I asked Ryan what was bothering him so much at the show and why he struggled to give our sweet hyena the props she was looking for and he said, "It was so hot in there and when it's hot, my brain doesn't work very well. It's really, really slow and makes it difficult to talk." Of course I felt ashamed because once again, I didn't get it. I misinterpreted his overloaded sensory system for rudeness, something I preach to others NOT to do. Sigh.

I apologized to my son. Again.

My second glimpse into my beautiful son's mind came in the form of a research project he had to complete for his English class entitled, "The Effects of Autism on the Brain". With Ryan's permission ("Please share it with everyone you know.") Here are a few excerpts of his project which he presented in front of 28 high school sophomores (he is braver than I could ever be).

"If you ever look upon a gathering of people, you may notice that there is one person excluded from the gathering, and that person may be carrying out unusual bodily functions or trying to avoid the nearby mass of people. You may think to yourself, “is that person okay?”, and neglect the possibility of that person having been diagnosed with autism.

How do autistic people view society?

1. More often than not, individuals with autism are most likely to see the world as an unstable place, full of utter chaos. They witness devastating, chaotic events, such as acts of terrorism, or loud noises and bright flashing lights, and taking the idea of the autistic brain functioning slowly, it is too much to take in at one single time.

2. Most autistic people prefer to live in a world where their lives are perfect. In society, perfection is impossible to achieve, and this is where the autistic person’s vivid imagination serves as a benefit. They can imagine that they live in a world where everyone is friendly, and there is little to no hatred whatsoever, and everything is perfect.

If you didn’t already know, I, Ryan, am also under the effects of autism. Whether or not you’d rather use the terms “individual with autism” or “autistic person”, one with autism still fits in society the way a normal, non-autistic person does. Some people who are not diagnosed with autism believe that this is not true, and that instantly gives away the fact that those people probably don’t understand what autism is. If we can start to teach people about autism, as well as solve problems that autistic people greatly oppose, people with autism can fit in better, live happier lives, and forever be considered "Different, not Less​".


His words are so much more powerful than mine could ever be because he is autistic and I am not. Which is why I have to listen, I have to not jump to conclusions and I have to keep trying to understand and accept behaviors that may be unexplicable to me, but, make perfect sense to him. I, too, wish we lived in a world "where everyone is friendly and there is little to no hatred whatsoever", but, until we do, I will try my best to accept what I can't understand and help others understand too. And even though I may blow it regularly because I am not autistic, my son knows that my love is unwavering, unconditional and unflappable, even when I am "horribly annoying and ridiculous". 
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Just a few of his words, overshadow thousands of mine.
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Going Down the Rabbit Hole. Again.

1/12/2018

2 Comments

 
I ignored the house phone when it rang. No one who really needs us calls that phone anymore. Then my cell phone rang, and since it was a local number I didn't recognize, I ignored it too. After all, it was Christmas break and my only goal was to hang with the family, eat cookies, drink wine and finish Season 2 of The Crown.

However, when the voicemail message alert popped up on my cell phone, I decided that even if I did want to see how Queen Elizabeth handled a remorseful Jackie Kennedy (even classy, grown up girls can be mean), I needed to check my message.

As soon as I heard the voice, I felt the hair on the back of my neck stand up. When a school official is calling over Christmas break you know they aren't calling to see if you got an Instant Pot for Christmas. Then I heard words like, "red flags", "teacher concerns", "out of the ordinary" and "worried" and that’s when the cold sweats began.

In a writing assignment, Ryan had written words that lead his teacher to all the words I just wrote above. I was literally trembling as I called the school administrator back. And as quickly as this nice man answered his phone, he was cut off and gone. I prayed after I yelled the word that rhymes with “duck” REALLY, REALLY, REALLY loud, that we truly were disconnected and that he didn't hear that expletive come so easily and freely from my mouth.

As I waited, hoping this nice man who was working over his break would call back this really sweary mom back, the worst case scenarios went through my head. As one fear lead to another, I sat on the couch willing my phone to ring and tried to calm myself down, but, the glow of the Christmas trees lights reminded me that any type of teacher or administrator calling over their sacred holiday break equals some type of big deal. Bigger than the deal Queen Elizabeth just made with the Prime Minister from Ghana on The Crown.

It only took 60 seconds for this school administrator to call me back, but, in those 60 seconds my brain went down the rabbit hole. Did he write about guns or bombs? I mean he spent all break killing creepers on Minecraft so it made sense. Did he script something that would be perceived as a threat? Did someone hear him script, “I have crippling depression” from his most favorite meme and think a call to Crisis Intervention was needed? My son has NEVER been violent or the least bit aggressive, but the rabbit hole is a place where only ugly thoughts creep in your head.

When the phone finally rang and I got the story, none of my catastrophizing scenarios came true. What this school administrator shared was sad, but, nothing like the scenarios I had created in my head. And after Ryan and I discussed it, Ryan’s words that were concerning to some, made sense to me.
 
As much as Ryan's words and his worries hurt my heart, I was so proud of Ryan’s ability to communicate his feelings and his concerns. What I wasn't proud of was my reaction. Damn it, I hate that rabbit hole.

Yes, the sense of panic with a call over Christmas break was somewhat worthy of alarm, but, to immediately go to such awful scenarios had me feeling shameful. I know my son better than anyone and there isn't an aggressive bone in his body, yet, I know when he scripts, he might not know the impact his words could have on people who don’t know him.
 
Whether it's on AWEnesty, my Facebook page or at an IEP Meeting, I beg and plead for everyone to not see the label, but, to see my son, yet, with one phone message and without so much as a backward glance at my son whom I know so well, I jumped both feet first down the rabbit hole and did exactly what I ask no one else to do, I saw autism first and Ryan second. And the guilt of it made me feel so ashamed.

Rather than wallow in my own shame and guilt, I decided to do something about it. I decided I needed to apologize to my son. After we discussed what had caused his teacher to be somewhat concerned and precipitated the phone call, I told him, "I was worried it was something else". Then when I told him about my trip down the rabbit hole he said, "Well, that's not a surprise since you over worry about everything."

Ryan's right. I do "over worry" about everything, like seriously, everything. So maybe my "over worry" to a holiday break phone call from school personnel and jumping down the rabbit hole wasn't quite so out of character for me. As for my son, who never disappoints me, he stayed true to his character too by pulling me out of the rabbit hole, as he has so many times before by being exactly who is meant to be.

He teaches me so much.

​Every. Single. Day.
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He really is AWEsome.
2 Comments

To the Moms I Have Never Met, but, Know Well

6/15/2017

6 Comments

 
Dear Mom I Have Never Met, but, Know Well,

Although we have never met, I feel like I know you. We may have never shared a glass of wine together, but, even without the wall that crumbles when you add some Cabernet, I believe that I know your deepest sorrows, your highest joys, your biggest regrets and the sometimes paralyzingly fear that envelopes you when you think of the future.

And sure, we may have never spent endless hours texting or face timing, but, in some ways I still think I know you better than some of your closest friends. Friends who love and support you and your child in the best way they can without ever walking in your shoes. I've never so much as stepped into your home, but, I have stepped into your shoes.

Even though I have never laid eyes on you, I know the look of relief that crosses your face when your child has been able to survive an unexpected change in plans. I know the enormous smile that reaches your eyes when your child allows you that extra cuddle or kiss and does not pull away when you stroke his head as you kiss him goodnight. I know the look of anguish that you try so well to hide when your child is rejected by his peers...again. I know the worry that creases your brow as your teenager spends another summer alone in his room. And I know the hope that creeps into your heart when you see your child make progress and think that maybe the experts got "it" wrong.

I'm familiar with the guilt when you sometimes wonder what could be and the gratitude you feel for what is. I know the indescribable joy of a successful haircut and the heartache of an unsigned yearbook. I know the regrets of the past, the awareness of the present and the fears of the future.

Damn, do you have time for another bottle of wine?

And although we may not have anything else in common, I know we share a common belief that our child is more than meets the untrained eye. We know our child can learn if we know how to teach him. We know our child can communicate if we learn how to listen to him.  We know our child can be successful if we learn how to support him. We share a desire for the world to see our child like we do. For others to not just be aware of Autism, the diagnosis, but, to be accepting of (insert your child's name here), the individual. And I know that regardless of what our mother tongue may be, we are advocating for our children in a universal language.

As much as I would love to share that glass of wine with you and get to know you better, I find comfort with each and every sip as I sit on my porch with only the summer crickets to keep me company, knowing that no matter what country or time zone we are drinking our Cabernet, Merlot or Chardonnay in, we are not alone. For that, and for you, I am eternally grateful.

Thanks for always being there,

Ryan's Mom
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I hope one day we can meet and you can meet this guy. He's kind of AWEsome.
6 Comments

Julia is Finally Here. 

3/22/2017

1 Comment

 
​Good things come to those who wait. We have been waiting for a long time. Some of us, much longer than others. But we waited. We advocated. We raised awareness. We knew what others didn’t. And now our patience has paid off.
 
Julia is here.
 
Julia, a muppet with autism, has found her way to Sesame Street and she is gonna chase the clouds away for many young children with autism. I am so incredibly grateful that Sesame Street has brought Julia to life, but, selfishly, I wish Julia would have come about a decade sooner. Don’t get me wrong, I LOVE that FINALLY autism has become so mainstream that adults, kids and now muppets with autism are showing up on your television screen, on the big screen and on Sesame Street, I just wish for my son and the kids who came before him, Julia would have come sooner.
 
Julia is going to do amazing things for young children with autism. A-mazing things. Kids are going to be more aware, more accepting and hopefully, more kind. The end result will be more, not less. And for many years, autism was perceived as "less" and I think that is why ten years ago, we weren’t ready for more…or for Julia. Ten years ago, differences of any kind, weren’t as accepted as they are today.
 
Sure people with autism and their families have been waiting for Julia and for the world to see what they have always known, that people with autism are more like “us” than they are different. Autistic individuals may process information differently than most of us, they may not communicate in the same way and their behaviors may be different, but, in the end they want to be loved and accepted just like all of “us” and just like every muppet on Sesame Street.
 
Had Julia come when Ryan was younger, he might be more willing to take risks socially now that he is in high school because the children in his preschool and elementary school watching Sesame Street would be aware that different did not mean less. They would understand that when Ryan didn’t respond to his name right away it didn’t mean he wasn’t listening or he didn’t care what they had to say, it just meant he needed more time to respond.
 
Those kids would have grown up understanding the reason Ryan had to be taken out of class before the fire drills was not because he was “weird”, but, because the noise was too much for his body to handle. Julia would have helped Ryan’s classmates understand his sensitivity to noises, his fabulous way of communicating through scripts and his desire to be included and accepted in the classroom, on the playground and in the cafeteria regardless of his limited eye contact when his friends approached him.
 
If Julia would have taught Ryan’s classmates HOW to interact with a classmate with autism, all of the burden of RYAN knowing how to interact with THEM wouldn’t have fallen on his tiny 5 year old shoulders. Ten years of awareness and acceptance would have made a big difference. Ryan’s classmates would have had ten years to understand autism, to understand him and to accept him, just the way he is. Oh Julia, I love that you showed up, I just really wish it would have been sooner.
 
Now that Ryan is in HS he struggles to interact socially and because he is “not much of a risk taker”, he doesn’t make many efforts to try. And because there were no muppets on Sesame Street with autism for the past ten years, his classmates don’t have a clue how to interact with him. This lack of awareness and education leads to isolation, it leads to depression, it leads to accepting that being alone is better than risking a social catastrophe.
 
If Julia would have showed up on Sesame Street ten years ago, Ryan might not feel so ashamed of the word "Autism", because kids would have been taught autism may be different, but it is not less and he would believe that too.
 
Julia could have really made a difference for Ryan. I hope that for the parents just hearing the words, “Your child has autism” they realize that there is a tiny yellow character with orange hair living on Sesame Street who is going to help them and their child pave the way to awareness and acceptance. She has arrived just in time for your child and his friends.
 
Thank you Sesame Street. I know that maybe the time wasn’t right ten years ago and maybe “we” weren’t ready for a little girl who flapped her hands when she got excited or had meltdowns when a siren went zipping past Sesame Street, but, we are ready now. Thank you for giving her to all of us. We really, really need her.

Picture
Ryan seeing a little bit of himself in Julia on Sesame Street.
1 Comment

10 Things I've Learned Loving a Child With Autism

9/8/2016

10 Comments

 
This list could be endless. This list could go on for days and days. This list is comprised of only 10 things because I know, we are a fast paced society who likes short lists. Really, really short lists. So here it is, short, sweet and begging for about 200 more things I've learned loving a child with autism:

  1. Experts know a lot about autism, I know a lot about my child. Autism is not a one size fits all diagnosis, therefore, neither are the various supports and therapies available. If it doesn't look like it fits, it probably doesn't, try something else on for size.
  2. Never say "never" and never believe "never". Ever. My son loves proving that "never" should NEVER be part of his vocabulary or mine.
  3. My son has empathy, he feels the emotions of others. In fact, I believe my son "feels" more than most neurotypical people, but, how he shows his emotions may look different. "Different" does not mean absent.
  4. Most people need educated about autism. The stares, the comments and the unsolicited advice is typically a result of ignorance. I can spend time being offended by the ignorance of others and counting in my head the various ways I could slap them, or I can educate them so the next autistic individual they encounter is better understood. I have chosen to educate and not be charged with assault.
  5. No, he will not "eat when he is hungry". My son has a very specific and limited diet as a result of his sensory sensitivities and his need for routine. It doesn't matter how good Grandma's famous mac and cheese is, it's not going to change his needs, so I won't ever test this theory.
  6. His time, his way. All the wasted time I spent agonizing over his delays or watching other kids wondering if, or when, my son would ever catch up was so pointless. My son always gets it, in his time, in his way.
  7. I worried so much about my future son that there were times I missed my "present son". I would give anything for a do over, to see the boy who was standing in front of me rather than focus and obsess over the boy who was yet to come.
  8. All those scripts, all those echoes and imitations, all those times I said to my son, "I don't want to hear so and so's voice, I want to hear YOU". Unfortunately for me, it was my son talking, I just wasn't listening.
  9. My child is not broken, he does not need to be fixed. He needs to be accepted, understood and loved. And trust me, he is.
  10. Autism is a journey and if you spend too much time watching others traveling a different road, you will miss many wondrous moments on the road before you.
  11. Yeah, I know the title says 10 things, but, I'm slipping in one more. Some days understanding a child with autism is hard, but, loving them is not.
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Loving him comes as easy as breathing.
10 Comments

I Am You

7/13/2016

6 Comments

 
When your heart tells you something is "wrong", but, you are terrified to know what that something is, so you put your head in the sand, I am you.

When you watch his friends reach every milestone on time as he falls farther behind and you cry yourself to sleep night after night, I am you.

When you can't reach him no matter how hard you try and you feel like you are failing him, I am you.


When you pull your head out of the sand wondering, "could it be..." and just as quickly go back under cover not ready to hear the word, I am you.

When you worry so much about his future that some days you miss his present, I am you.

When your parenting is questioned and you then start questioning yourself, I am you.


When you try to help him, but, your help is rejected or you make things worse and it tears your heart in two, I am you.

When you see that he is hurting, but, he can't tell you why and you are overcome with helplessness, I am you.

When you know it's not "all in your head" and someone finally agrees, 
I am you.

When you are sitting across the desk from the professional trembling because you know your world is about to be irrevocably changed, I am you.


When you finally hear The A Word and you have no choice but to get your head out of the sand in order to help him, I am you.

When you start to see him and not the label, I am you.

When you understand that acceptance is the only way to move forward, I am you.

When worry and fear is superceded by love and determination, I am you.

When you see progress, no matter how small, and it makes the hurt fade away, I am you.

When you spend less time watching other kids and focus only on him, I am you.

When you realize that although the future is important, missing the present is no longer an option, I am you.

When you no longer see what is wrong, but, see all that is right, I am you.

When you no longer let autism define him or you, I am you.

When you believe that "son" or "daughter" is the only label that matters, I am you.

When you can finally see the world through his lens and not your own, I am you.

When you accept that nothing has ever been "wrong" except your perception of what is "right", I am you.

When you realize that the journey may seem lonely, but, that you are never alone, I am you.

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Our paths may never cross, but, in many ways we know each other well.
6 Comments

Not Autistic Enough

4/10/2016

1 Comment

 
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During the month of April, autism is talked about, debated over and sensationalized more than the other 11 months of the year combined, so it stands to reason if you write a blog about autism you are going to hear more from people who have autistic children. They want to compare notes, celebrate progress, cry over setbacks, but, mostly, share with someone who "gets it".

One such parent and I were swapping stories, sharing the good times and the bad. It was nice. It felt comfortable. It felt welcoming. Until it didn't.

It got colder. It got weird. It got less welcoming. The change was subtle, but, I recognized it because I have felt it before. "Ryan is not in the autistic support classroom, he is mainstreamed". It was a statement, not a brag, not a contest. I was asked and I answered.

I have seen this change before in other faces of parents loving a child with autism. The expression falls somewhere between disappointment, jealousy, sadness, betrayal to maybe even a little indignation. The face, especially if it belongs to someone who's child is in fact in the autistic support classroom, says, "He is not autistic enough".

Just like the thousands of people who fall somewhere on the wide expanse known as the autism spectrum, there are equally as many family members who are trying to come to grasp with this diagnosis falling somewhere on the wide spectrum of acceptance. Like on any spectrum, some parents fall on one end while others fall at the other with tons of parents falling somewhere in between. Much of this may have to do with where their child falls on the autism spectrum, how much time they have had to process their child's diagnosis and where they stand in their relationships with the friends who seem to enter all autistic parents social circles, Denial and Acceptance.

Prior to knowing a child has autism, when we parents are in that "I wonder if..." stage, we are constantly comparing our child to their siblings, their classmates, their neighbors. Then once the autism diagnosis comes, the comparisons tend to switch from neurotypical kids to other kids with autism. It seems more "fair" and I totally get it.

We talk with other parents at therapy appointments, at social skills groups and we consume all we can online about other kids and adults with autism. There is AWEnestly a sense of gratefulness when we read a story online about a child with autism who seems "worse off" than our own. "Well at least my kid can_____" or "At least my kid doesn't____". I get it because it is hard when a child is "different" so it helps to know that in some realms, those differences aren't quite as different as others.

Some people with autism are much higher functioning and although all autistic people have strengths and deficits, some deficits are much more profound. I understand that a mother whose child has seizures, is non-verbal and unable to be toilet trained has a much different life than my son and me, and while I am empathetic to their struggles, I should never be made to feel "guilty". My son struggling with how and where to fit in and accept that he is "different" than most of his classmates is much different than another mother's son who is unable to communicate his basic needs. To say any one of them are "better" or "worse" feels like apples and oranges. Why compare an apple to an orange in the first place? Even though they may both be fruits, how they look, the way they grow, the climate they thrive in, are very different.

Yet we do it, because we are human. I have a wonderful friend who is in my "gets it" club. Her son and Ryan are the same age and they both have autism. We don't compare the exact location of where our boys fall on the autism spectrum, but, we seem to both be in a similar place on the acceptance spectrum. Sure, we compare notes and often find ourselves amazed by our sons' unique, yet similar, differences, but, mostly we support each other. We celebrate our boys successes and commiserate the days and moments that they struggle and the days and moments that we struggle. I have shed tears over her son's successes and struggles as she has Ryan's. We don't think about which one of our boy's is "more autistic", we celebrate them for exactly who they are and confide in one another as we wonder one day who they will be. Yes, we compare, but, mostly we share...with understanding, compassion and support. 

I once was speaking at an event for mothers of children with varying disabilities. One mother whose daughter was non-verbal, in a wheelchair and on a ventilator told me that a friend with an autistic child explains that she feels "guilty" when she complains about her child's struggles since this mother whose child will never walk, talk or breath on her own had things so much "worse". This mother looked at me with love and understanding and said, "I tell her there is no need to feel bad. Her child has autism and wanders away. I am grateful knowing I don't have to worry about my child wandering and getting lost or hurt". Apples. Oranges.
 
Regardless of the degree of differences in abilities and disabilities in autism, we should never be made to feel bad or guilty for our child's progress. They have worked so hard to get where they are and their progress has nothing to do with anyone but themselves. Ryan does not look at someone with autism who is non-verbal and uses an iPad to communicate as being "worse" than him, Ryan sees a different way to communicate. Ryan does not believe he is "better" than a classmate in the autistic support classroom, he sees a student who learns better with more support. Ryan does not believe that he is "more autistic" than another autistic friend who is much more social than Ryan, Ryan sees a friend who just likes to chit chat while he does not. This is not because Ryan is hugely empathetic and extraordinarily kind, Ryan just knows that his progress, his struggles have NOTHING to do with anyone, but, him. As parents, we can learn from this...no matter where we fall on the spectrum of acceptance.

Ryan may be verbal, mainstreamed and blessed with the gift of perfect pitch, but, he is lonely, anxious and recognizes that he is "different". He is not "better off" he is not "worse" than other autistic kids. Ryan has strengths and deficits and where he falls on the autism spectrum is HIS place, HIS spot and he should NEVER be made to feel badly about this spot he has been placed on, and as his mother, neither should I. There should be no judgement of what makes someone "autistic enough" any more than parents should be judged on what makes them "accepting enough". 

Ryan is smart. Ryan is funny. Ryan is compassionate. Ryan is musically gifted. Ryan is lonely. Ryan is anxious. Ryan is progressing. Ryan is struggling. Ryan is autistic. Ryan is Ryan and THAT is enough.

Regardless of where we as parents loving a child with autism fall on the spectrum of acceptance, when we preach and advocate that autistic individuals are "different, not less" than neurotypicals, we need to keep that in mind within the autism community as well.

​Enough is enough.

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Awareness, acceptance and understanding.
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    Definition of Awe:
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    reverence, respect, dread and wonder inspired by authority, genius, great
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    spelling AWEtism.

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