I get asked this a lot now. As this blog grows, it's always kind of amazing/awesome to see folks following it that DON'T have a child with autism. Some of them are teachers and therapists. Some of them are siblings, step parents and extended family like grandparents or cousins. Some of them just thought my dark sense of humor was kind of funny and somehow found their way to the Facebook page or my Twitter. It was probably all my posts about reality TV or wine. You big lushes.
Whatever way you found yourself here, I am sure glad you are around. You want to know more. How you find it interesting and you are learning so much. Let's face it. Autism parents are rock stars and you just want to work on your autism street cred and hang out at our lunch table. You are more than welcome to do so. Just don't expect my kiddo to share his fries. Expect he'll probably just reach over and eat yours actually.
All the same, the question I hear the most is "How can I help?" You all want to be cool and down with us. You've heard us raging about the jackasses we have had to deal with in our daily lives. You don't want to be the subject to our sleep deprived rage. (That is most wise.) You also get by now that it doesn't take much to make us happy. We celebrate any and all things. Big or small. So yes, we will be grateful to any help we get along the way. Here are a few simple things to make yourself fanfreakingtastic (It is too a word Auto Correct) in my tired eyes.
1) Once I had to half carry out the kiddo out of the mall mid meltdown. The kindest thing happened. A teenage girl saw us coming to the door. She swiftly opened it wide for me and held it open till we passed. I yelled "Thank you!" over the kiddo's screams. Maybe she had a sibling or knew what she saw coming at her. She certainly knew what to do and cleared a path. If you see a parent wrestling something that looks like the Tasmanian Devil going full whirl, hold the door. We only got two hands. That helps immensely.
2) Again, trying to exit a kid's birthday party where the kiddo became massively overwhelmed, the owner of the bouncy house place decided this was a perfect time to ask me EVERY SINGLE QUESTION ABOUT AUTISM. He also wanted me to know how bad he felt about my son's sensory overload which he repeated multiple times as I was trying to pick my son off the floor and dodging his kicks with his snow boots on. Just typing this gets me all in a tizzy about it again. Dude, time and a place!!! Mid meltdown ain't it. That's great that you want to make a parent feel better and you want them to know you are so compassionate and open minded. However attempting a Q and A session when the child is in mid crisis is takes a bit of shine off your polish.
3) Remember when that loved one in your life first told you that their child had autism? Or was just going through the long process of being diagnosed? I bet you said something like "If there is anything I can do..." It's been a few years since then. Want to rock my world? Say it again. Say it now that I've been doing this since he was 22 months old and now he's 9. Offer what you can of course within reason. I don't expect anyone to send me on a week long cruise while they are watching the kiddo. (Although, so wouldn't say no friends and family. Just saying!) Sometimes just calling or texting a person. Sending a funny email or a post on their "wall" a Hello and how do you do? It really means so much when you are just going and going and going... (Again, people who know me. Feel free to insist I go away for a weekend. Twist my arm. Really)
4) Include my kid with your kids. I don't expect them to be BFFs with the lad. Let's face it. I've already admitted he's a French Fry thief. That's a serious crime in the grade school years. But if you are having folks over and you got kids, sit them down and explain a little autism to them. I bet they already know some stuff about it. They probably know some kids at school with it. Keep it age appropriate. Explain to them a little extra patience goes a long way. Doctors and therapists are always up our butts to set up some play dates with typical peers and let me tell ya, that's easier said than done. You want to help my kiddo cause you love him? Let your kid be his role model. Or bad influence. Whatever you got. :-)
5) Don't use the words "autistic" or "retarded" as slurs. Ever. I'm not talking just in front of me. I mean in front of EVERYBODY! You know what I mean when I say this. Don't be that douche. Don't try to argue with me. I'm telling you like it is. Don't be that person. Don't be so far removed from it that you can't see the pain it can cause. A simple car accident can cause brain damage and a perfectly healthy person can then be in the same exact boat. So autism, delays, brain damage, special needs, etc... It's closer to you than you think. Don't be tossing those terms around like you are untouchable. You are not.
Well that's all I can think of at the moment. I just want to thank you fries again for being here. Whatever your reason for being here. I'd give you a big old sloppy kiss if I could. How about a side of fries? I share. :-)
Thursday, August 15, 2013
Monday, August 12, 2013
What a year means
I just realized the other day that my one year anniversary into the wild and wacky world of Autism blogging is coming up at the end of this month. I ought to write something profound or thought provoking with a touch of whimsy heart warming fuzzy happy thoughts to it. Or I can do what I usually do and just ramble on while I wait for the wash cycle to get done and I can then throw my family's laundry in the dryer and then forget about it for a couple of hours till it's nice and wrinkled. Yeah, I'm good at that. Let's just do that instead.
When it comes down to it, yes, I learned something. Quite a lot actually. So in honor of my kiddo and his love of numbers, a list of things a year has taught me.
1) "What a difference a year makes" is a cliche but it's true. It's also not. In many ways the kiddo is completely different than the kiddo I had at this time last year. We conquered some serious food sensory issues but we're still dealing with some serious sleep/anxiety ones. No two days are the same at French Fry Inc but we don't dare change the routine or fear the wrath of the kiddo. Then sometimes a monkey wrench gets thrown into the works beyond my control. I brace myself for the meltdown and it doesn't happen. Maturity? Flexibility? Reason? Or just damn lucky. I'm going with lucky. I learned that for sure. Just don't question it when something works that saves the day. It just did. Keep going.
2) I went online to escape all things autism. I decided rather firmly not to return to my former career of working in a special needs private school that worked mainly with the autism population. I needed breaks! I needed space. What did I wind up doing? Blogging about it anyway. Created a Facebook/Twitter community I hold so dear to my heart. Yes, my friends live in my iPhone. Sometimes when you push something so far away, well it's gonna boomerang right back into your face. Deal with it. It walked into your life for a reason. Stop pushing and go with the flow.
3) Opinions are like assholes and everyone has one. Just because you don't agree with my way of doing things doesn't mean I'm wrong. We can both do things that work for our families, they can be completely different and still be the right choice! Imagine that! Nor do you have to reply with long Gospels according to Autism to every single post on a blog/page/tweet you see online. Save yourself the energy for your kids. You're no likely going to change that person's mind anymore than they will change yours. A couple years into this, you pretty much have an idea where you stand.
4) Sometimes I want to share more. I would love to refer to my son by name and post a zillion pictures of him. The world though is a scary place and I won't. He never asked me "Hey mom, do me a solid and write a blog about me. Make sure you don't forget my fear of bumblebees, how I have a hard time remembering when to go poop and how I still like to sit down with a good Blues Clues at age 9 now and then." So despite him being the most handsome creature on this earth, I won't post pictures of him. Nor will I say his name. Some things just got to stay with me.
5) Being a theater nerd in high school prepared me well for autism. I am constantly having to explain things to large groups of people. Stage fright? Ain't nobody got time for that. Singing helps my son speak? Well then, our house will be a walking musical. I sing everything. Social stories are our scripts. We are well prepared and rehearsed for new situations. There are no dress rehearsals. Places people and GO!
6) Nothing could of prepared me for over 14 thousand followers on Facebook. That's just nuts. I am forever grateful for it. You fries have helped me so much in ways you don't even know. To know I'm not the only one surviving on a steady diet of coffee and snark, it means so much to me. I was sad and angry for a very long time. I still have those days. I won't lie. Then I'm like, "Well this effing sucks. So let's drop this crap." and I move on. I have to laugh. I have to be twisted. It's just how I deal. I'm so very glad I found others just like me.
7) Folks who think I'm so sort of autism guru. Dudes, I am so not. I am just a mom. That's it. Anybody can blog. Anybody can have a Facebook page and decorate it with puzzle pieces everywhere. I'm not doing anything that special. There are thousands of these pages. I know this because I"m usually being asked to share them everyday. :-) Good luck to you who dive into this world. If you want to do it, go for it. I offer one bit of advice. Do it because you love it not just for the "likes". If that number is the only thing you are worrying about, you are in it for the wrong reason. Go change it to just a funny meme sharing page and call it a day.
8) Waking up and seeing an email from someone from another country blows my ever loving mind still. Apparently, I'm a big deal in AUSTRALIA! Little old me. Who knew? Like how the heck did all of you Down Under folks find me? Do you call the rest of the planet "Up Over"? Seriously, I want to know. Aussie, Aussie, Aussie, Oi, Oi, Oi!
9) Autism Bloggers are AWESOME!! I have made some of the coolest pals in the blogging world and still get a little star struck when they comment on my posts. I'm all "OH MY GOD THEY READ IT!?!?!?!?! THEY LIKED IT?!?!?!?!" Then when I see them share it? I really loose my mind.
10) I ain't done yet. I'm not sure what the next step will be for me but I know I will take it. So far, this whole year has been a very organic process. Nothing felt forced. The posts that got the most attention are all the ones I wrote on the fly. I'll just have to see where this takes me next. I hope it will be as fun and scary and exciting and awesome as this has been.
When it comes down to it, yes, I learned something. Quite a lot actually. So in honor of my kiddo and his love of numbers, a list of things a year has taught me.
1) "What a difference a year makes" is a cliche but it's true. It's also not. In many ways the kiddo is completely different than the kiddo I had at this time last year. We conquered some serious food sensory issues but we're still dealing with some serious sleep/anxiety ones. No two days are the same at French Fry Inc but we don't dare change the routine or fear the wrath of the kiddo. Then sometimes a monkey wrench gets thrown into the works beyond my control. I brace myself for the meltdown and it doesn't happen. Maturity? Flexibility? Reason? Or just damn lucky. I'm going with lucky. I learned that for sure. Just don't question it when something works that saves the day. It just did. Keep going.
2) I went online to escape all things autism. I decided rather firmly not to return to my former career of working in a special needs private school that worked mainly with the autism population. I needed breaks! I needed space. What did I wind up doing? Blogging about it anyway. Created a Facebook/Twitter community I hold so dear to my heart. Yes, my friends live in my iPhone. Sometimes when you push something so far away, well it's gonna boomerang right back into your face. Deal with it. It walked into your life for a reason. Stop pushing and go with the flow.
3) Opinions are like assholes and everyone has one. Just because you don't agree with my way of doing things doesn't mean I'm wrong. We can both do things that work for our families, they can be completely different and still be the right choice! Imagine that! Nor do you have to reply with long Gospels according to Autism to every single post on a blog/page/tweet you see online. Save yourself the energy for your kids. You're no likely going to change that person's mind anymore than they will change yours. A couple years into this, you pretty much have an idea where you stand.
4) Sometimes I want to share more. I would love to refer to my son by name and post a zillion pictures of him. The world though is a scary place and I won't. He never asked me "Hey mom, do me a solid and write a blog about me. Make sure you don't forget my fear of bumblebees, how I have a hard time remembering when to go poop and how I still like to sit down with a good Blues Clues at age 9 now and then." So despite him being the most handsome creature on this earth, I won't post pictures of him. Nor will I say his name. Some things just got to stay with me.
5) Being a theater nerd in high school prepared me well for autism. I am constantly having to explain things to large groups of people. Stage fright? Ain't nobody got time for that. Singing helps my son speak? Well then, our house will be a walking musical. I sing everything. Social stories are our scripts. We are well prepared and rehearsed for new situations. There are no dress rehearsals. Places people and GO!
6) Nothing could of prepared me for over 14 thousand followers on Facebook. That's just nuts. I am forever grateful for it. You fries have helped me so much in ways you don't even know. To know I'm not the only one surviving on a steady diet of coffee and snark, it means so much to me. I was sad and angry for a very long time. I still have those days. I won't lie. Then I'm like, "Well this effing sucks. So let's drop this crap." and I move on. I have to laugh. I have to be twisted. It's just how I deal. I'm so very glad I found others just like me.
7) Folks who think I'm so sort of autism guru. Dudes, I am so not. I am just a mom. That's it. Anybody can blog. Anybody can have a Facebook page and decorate it with puzzle pieces everywhere. I'm not doing anything that special. There are thousands of these pages. I know this because I"m usually being asked to share them everyday. :-) Good luck to you who dive into this world. If you want to do it, go for it. I offer one bit of advice. Do it because you love it not just for the "likes". If that number is the only thing you are worrying about, you are in it for the wrong reason. Go change it to just a funny meme sharing page and call it a day.
8) Waking up and seeing an email from someone from another country blows my ever loving mind still. Apparently, I'm a big deal in AUSTRALIA! Little old me. Who knew? Like how the heck did all of you Down Under folks find me? Do you call the rest of the planet "Up Over"? Seriously, I want to know. Aussie, Aussie, Aussie, Oi, Oi, Oi!
9) Autism Bloggers are AWESOME!! I have made some of the coolest pals in the blogging world and still get a little star struck when they comment on my posts. I'm all "OH MY GOD THEY READ IT!?!?!?!?! THEY LIKED IT?!?!?!?!" Then when I see them share it? I really loose my mind.
10) I ain't done yet. I'm not sure what the next step will be for me but I know I will take it. So far, this whole year has been a very organic process. Nothing felt forced. The posts that got the most attention are all the ones I wrote on the fly. I'll just have to see where this takes me next. I hope it will be as fun and scary and exciting and awesome as this has been.
Sunday, August 4, 2013
Autism, have mercy.
Sunday, a day of rest. Pardon me while I laugh my ass off at the very thought. Or I would if I wasn't so tired. The kiddo's meltdowns were my god damn undoing today.
I sit here utterly spent. There are just some days I want to close the day firmly like a door, lock it and throw away the key. I don't want to remember this day. I don't really have to remember it because I am sure there will be others like it.
I don't even have the energy to do a play by play of what went wrong so I can learn from it. I don't want any more teachable moments. Today I don't care. I'm flipping sick of having to constantly plan. I'm sick of having to check every choice I make. I know autism is a different set of thinking and way of processing information. Today, I am really tired of having to always be thinking about every situation in two different ways. Neurotypical and Autistic. I simply wish we could just be.
I am tired of being so very angry still. I'm not going to even ponder when or if that ever goes away. I don't think it ever really will. I know I am stuck in a moment and it's not a life time thing. In this moment, I am having a really flipping hard time getting out of this stuck position.
What are my choices? Bottle it up and feel worse or discuss it here or with somebody and still feel worse till I get distracted by life and have to bottle it up again? I don't want to go over what went wrong and how to avoid it in the future because today was just one of those days where I will never fully know what it was that started the bad funk. In him and then eventually in me. It could be something as simple as I went down the "wrong road" (in his mind) while out driving before and for whatever reason that set the tone. He couldn't tell me or I wasn't listening, well listening with my autism ears, which you know is completely different kind of listening. He saw something amiss and I couldn't see it. Autism eyes, I must of forgot those too.
I know he's got to be exhausted. He's stuck with two parents who do not share his neurology. He is constantly having to explain why he is upset and sometimes he can't even do that. I bet that probably makes him feel even worse. I'll add that to stuff I am pissed about. If my kid is upset, I should be able to stop it. I should be able to see immediately what it is that is bothering him and fix it . I would like to be able to reason and explain to him why something can't go his way. I"m not asking for the world to always bend to him. He's got to compromise too. Today, it just seemed impossible for both of us.
Autism, have mercy. Today I have had enough. I can't be jolly all the time. I don't always feel like embracing the quirks. Sometimes I just want to go from point A to point B without having to pick up and carry my 9 year old son in public in front of a crowd. It's too damn hard to do this Sunday.
In all my years of Catholic school, I don't remember the nuns ever mentioning a patron saint of neurodiversity. I think I will just pray to St. Anthony, the finder of lost things because today I have surely lost my ever loving mind. Usually I'm just bugging him to help me to find the remote to the DVD player so I suspect he'll like hearing a different tune from for a change.
I sit here utterly spent. There are just some days I want to close the day firmly like a door, lock it and throw away the key. I don't want to remember this day. I don't really have to remember it because I am sure there will be others like it.
I don't even have the energy to do a play by play of what went wrong so I can learn from it. I don't want any more teachable moments. Today I don't care. I'm flipping sick of having to constantly plan. I'm sick of having to check every choice I make. I know autism is a different set of thinking and way of processing information. Today, I am really tired of having to always be thinking about every situation in two different ways. Neurotypical and Autistic. I simply wish we could just be.
I am tired of being so very angry still. I'm not going to even ponder when or if that ever goes away. I don't think it ever really will. I know I am stuck in a moment and it's not a life time thing. In this moment, I am having a really flipping hard time getting out of this stuck position.
What are my choices? Bottle it up and feel worse or discuss it here or with somebody and still feel worse till I get distracted by life and have to bottle it up again? I don't want to go over what went wrong and how to avoid it in the future because today was just one of those days where I will never fully know what it was that started the bad funk. In him and then eventually in me. It could be something as simple as I went down the "wrong road" (in his mind) while out driving before and for whatever reason that set the tone. He couldn't tell me or I wasn't listening, well listening with my autism ears, which you know is completely different kind of listening. He saw something amiss and I couldn't see it. Autism eyes, I must of forgot those too.
I know he's got to be exhausted. He's stuck with two parents who do not share his neurology. He is constantly having to explain why he is upset and sometimes he can't even do that. I bet that probably makes him feel even worse. I'll add that to stuff I am pissed about. If my kid is upset, I should be able to stop it. I should be able to see immediately what it is that is bothering him and fix it . I would like to be able to reason and explain to him why something can't go his way. I"m not asking for the world to always bend to him. He's got to compromise too. Today, it just seemed impossible for both of us.
Autism, have mercy. Today I have had enough. I can't be jolly all the time. I don't always feel like embracing the quirks. Sometimes I just want to go from point A to point B without having to pick up and carry my 9 year old son in public in front of a crowd. It's too damn hard to do this Sunday.
In all my years of Catholic school, I don't remember the nuns ever mentioning a patron saint of neurodiversity. I think I will just pray to St. Anthony, the finder of lost things because today I have surely lost my ever loving mind. Usually I'm just bugging him to help me to find the remote to the DVD player so I suspect he'll like hearing a different tune from for a change.
Tuesday, July 30, 2013
Getting to know you, Getting to know all about you...
Getting to like you, getting to hope you like meeeeeee....
As promised, you asked, I answered and I sure hope we're still talking by the end of this little experiment. Only one way to find out. Let's dive on in.
1) "Where do you live?"
I hail from the magical land of New Jersey. The Jersey Shore to be exact and NOT that hot mess that was on MTV. I'm not spray tan orange and my name is not Snooki. I love our location. Close enough to NYC and Philly for trips but far enough away to not have to live in either. Not that I don't like cities, I'm just a fan of the 'burbs. Yep, close to the beach but I don't really like sand (sensory!) and I hate seafood. Go figure. Still love it though.
2) "What did you do before you had the kiddo?"
SLEEP! Oh wait, you mean for a living don't you? I was a pre vocational instructor and job coach at a private school for special needs children, most of which on the autism spectrum. Yes, I'm very aware of the irony. No, it doesn't make me better prepared for what life throws at us either. I may of been familiar with terms and treatments but it's a whole different ballgame when your kid's name is on the paperwork. Trust me.
3) "How old was the kiddo when you received his diagnosis?"
Well we started Early Intervention when he was 22 months old and honestly I thought it was just for delayed speech. Had a niece with similar issues, didn't think much of it. Saw the EI folks giving all sorts of test at his evaluation that were pointing in that direction and I was "Hey what the eff is going on?" My husband left the room and I corner the two with "Dudes I KNOW what the tests are for. Are we talking autism?" They both looked at each other, shrugged and one of them "Well yeah but it's a spectrum so it might not be too bad." and then they packed up and left with promises to call me to set up appointments. It then took another two years before we had a doctor say for good "autism". There were a series of doctors and visits that drove me crazy. "Well things look okay now but keep doing what you are doing and we'll see..." Wtf with that nonsense? Seriously. I wish we didn't have to go through that. Rip off that band aid quick and let us know what we are dealing with.
4) "What therapies truly help?"
This is a tie. Music therapy for his anxiety and speech and feeding therapy from his speech therapist. The kiddo has always been drawn to music from when he was a baby. There was a time as an infant Maroon's 5, "She Will Be Loved" had to be playing if I wanted him to eat. (Gee, there's a little quirk from the get go) We always have music going on in this house. Either his or mine. Mostly his but hubby and I do find he likes our music more than traditional kiddie music. (We don't need no stinking Wiggles!) The music therapist gave me to greatest tip with him for speech. Sing! Everything. It's a walking musical in this house. He can sing something always before he can say it. That's cool right? The brain and it's neuroplasticity is flipping awesome! He finds such comfort in music and that certainly helps for when he needs to collect himself and regulate. CDs getting heavy rotation? James Taylor, Cat Stevens, Train, and anything from the cast of GLEE. (We saw the concert movie 3 times in the theater) Now the feeding therapy? I think that's kind of clear why. Hello! He's finally eating something other than fries!!!! All hail the magical speech therapist with her Hogwarts degree that got him to eat vitamins!
5) "How do you find any "time" with your spouse? For talking stuff over, sex, anything?"
Dudes, my mom reads this! You had to ask this? Right now folks, sleep IS the new sexy in our marriage. As for the talking stuff over and all that romantic crap, well, when we can. We've been known to text each other while we are both in the house. (Usually when he's on bedtime getting the kiddo to sleep duty) We try to run out now and then for a lunch date or breakfast when he has school. Sometimes my mom has watched him on a weekend and we get to see a movie that isn't a cartoon. It's hard. I just can't hire a 14 year old to watch him. That kind of stinks. I wish I could but it is what it is. So yeah, it's tough discussing things with him over emails on our smart phones while I'm in a waiting room and he's at work but it's what we have to do. Every now and then the planets align and we are both awake and we watch a Netflix together. It's married life.
6) "Do you want more kids?"
I just got this one potty trained and feeding himself so that would be a big fat NO! Just around the time when the idea of having enough came up is when we started our autism journey. Then it got tabled for later and as time went by, it was pretty clear what worked for him and for us was to be "One and done". I"m okay with that. Not what I thought would happen but I didn't think autism would either so there's that. :-) We do have two dogs so I feel like I got a couple of extra running around anyway.
7) "What is the one thing you wish you'd learned earlier in your journey that might have made a difference to how you, as a family and as an individual, deal with the day to dayness of living with ASD?"
To chill the fuck out. Seriously. It is so easy to get overwhelmed and want to do everything "right". Guess what? You WILL screw something up. No way to prevent it. It will happen. I had to learn that sometimes I can do stuff for my family that works for us and that's okay if no one else agrees with us. We got a saying in Jersey, "You do you." I live by this for all the autism choices we have to make. We do us. We don't worry about anyone else or their opinions.
8) "What's your vaccine stance? Do you think it caused autism?"
I've blogged about this before. I don't care what caused his autism. I really don't. It doesn't serve us now to know if anything happened then and no, I don't think vaccines did. I never saw that sudden change in personality or his development that I've read on other autism parents message boards. Autism is a spectrum disorder and there are probably a spectrum of reasons why it's there in one person and not in the next. I'm going to leave that one to science to figure out why. I'm busy trying to teach the kiddo to look both ways when crossing the street and to tie his shoes. Oh and please spare me links proving theories one way or another. I'm not even going to look at them. All I ask is before you "share" some groundbreaking article on your Facebook feed for all to see, look where it's coming from. Anybody can make a web site and put articles up. It doesn't make it a medical journal just before it's online. That goes for BOTH sides of this debate.
9) "What's your favorite wine?"
Are you buying? Then it's the kind with alcohol in it. If you twisted my arm, I'd say a nice Pinot Noir or Shiraz wouldn't be refused.
10) "Does the kiddo really get up that early?"
LOOK WHEN I'M POSTING STUFF!!!! Why for the love of SLEEP would I ever make that up? Look at my eyes! Look at these bags!!! I could store my keys and cell phone in them they are so big. And don't you see other people posting right back saying "Yep up here too" and it's like 5AM. These are the hours I keep at French Fry Inc. My boss is a hard ass!
Bonus question "What do you do for fun?"
Talk to all of you. Blogging has been the best form of therapy yet. Well, the Prozac helps too but getting the words to the feelings, ahhhhh, that's the stuff. I like to cook, read, be snarky (it is too a hobby) and watch incredibly bad reality tv. Also SHOWTUNES! Love them all. Somebody asked me to pick my favorite. I can't. That's how addicted I am.
OK fries. I got a load of laundry to fold. That's all I got time for at the moment. Got others? Leave a comment and I'll hit ya back when I'm done matching the mountain of socks.
As promised, you asked, I answered and I sure hope we're still talking by the end of this little experiment. Only one way to find out. Let's dive on in.
1) "Where do you live?"
I hail from the magical land of New Jersey. The Jersey Shore to be exact and NOT that hot mess that was on MTV. I'm not spray tan orange and my name is not Snooki. I love our location. Close enough to NYC and Philly for trips but far enough away to not have to live in either. Not that I don't like cities, I'm just a fan of the 'burbs. Yep, close to the beach but I don't really like sand (sensory!) and I hate seafood. Go figure. Still love it though.
2) "What did you do before you had the kiddo?"
SLEEP! Oh wait, you mean for a living don't you? I was a pre vocational instructor and job coach at a private school for special needs children, most of which on the autism spectrum. Yes, I'm very aware of the irony. No, it doesn't make me better prepared for what life throws at us either. I may of been familiar with terms and treatments but it's a whole different ballgame when your kid's name is on the paperwork. Trust me.
3) "How old was the kiddo when you received his diagnosis?"
Well we started Early Intervention when he was 22 months old and honestly I thought it was just for delayed speech. Had a niece with similar issues, didn't think much of it. Saw the EI folks giving all sorts of test at his evaluation that were pointing in that direction and I was "Hey what the eff is going on?" My husband left the room and I corner the two with "Dudes I KNOW what the tests are for. Are we talking autism?" They both looked at each other, shrugged and one of them "Well yeah but it's a spectrum so it might not be too bad." and then they packed up and left with promises to call me to set up appointments. It then took another two years before we had a doctor say for good "autism". There were a series of doctors and visits that drove me crazy. "Well things look okay now but keep doing what you are doing and we'll see..." Wtf with that nonsense? Seriously. I wish we didn't have to go through that. Rip off that band aid quick and let us know what we are dealing with.
4) "What therapies truly help?"
This is a tie. Music therapy for his anxiety and speech and feeding therapy from his speech therapist. The kiddo has always been drawn to music from when he was a baby. There was a time as an infant Maroon's 5, "She Will Be Loved" had to be playing if I wanted him to eat. (Gee, there's a little quirk from the get go) We always have music going on in this house. Either his or mine. Mostly his but hubby and I do find he likes our music more than traditional kiddie music. (We don't need no stinking Wiggles!) The music therapist gave me to greatest tip with him for speech. Sing! Everything. It's a walking musical in this house. He can sing something always before he can say it. That's cool right? The brain and it's neuroplasticity is flipping awesome! He finds such comfort in music and that certainly helps for when he needs to collect himself and regulate. CDs getting heavy rotation? James Taylor, Cat Stevens, Train, and anything from the cast of GLEE. (We saw the concert movie 3 times in the theater) Now the feeding therapy? I think that's kind of clear why. Hello! He's finally eating something other than fries!!!! All hail the magical speech therapist with her Hogwarts degree that got him to eat vitamins!
5) "How do you find any "time" with your spouse? For talking stuff over, sex, anything?"
Dudes, my mom reads this! You had to ask this? Right now folks, sleep IS the new sexy in our marriage. As for the talking stuff over and all that romantic crap, well, when we can. We've been known to text each other while we are both in the house. (Usually when he's on bedtime getting the kiddo to sleep duty) We try to run out now and then for a lunch date or breakfast when he has school. Sometimes my mom has watched him on a weekend and we get to see a movie that isn't a cartoon. It's hard. I just can't hire a 14 year old to watch him. That kind of stinks. I wish I could but it is what it is. So yeah, it's tough discussing things with him over emails on our smart phones while I'm in a waiting room and he's at work but it's what we have to do. Every now and then the planets align and we are both awake and we watch a Netflix together. It's married life.
6) "Do you want more kids?"
I just got this one potty trained and feeding himself so that would be a big fat NO! Just around the time when the idea of having enough came up is when we started our autism journey. Then it got tabled for later and as time went by, it was pretty clear what worked for him and for us was to be "One and done". I"m okay with that. Not what I thought would happen but I didn't think autism would either so there's that. :-) We do have two dogs so I feel like I got a couple of extra running around anyway.
7) "What is the one thing you wish you'd learned earlier in your journey that might have made a difference to how you, as a family and as an individual, deal with the day to dayness of living with ASD?"
To chill the fuck out. Seriously. It is so easy to get overwhelmed and want to do everything "right". Guess what? You WILL screw something up. No way to prevent it. It will happen. I had to learn that sometimes I can do stuff for my family that works for us and that's okay if no one else agrees with us. We got a saying in Jersey, "You do you." I live by this for all the autism choices we have to make. We do us. We don't worry about anyone else or their opinions.
8) "What's your vaccine stance? Do you think it caused autism?"
I've blogged about this before. I don't care what caused his autism. I really don't. It doesn't serve us now to know if anything happened then and no, I don't think vaccines did. I never saw that sudden change in personality or his development that I've read on other autism parents message boards. Autism is a spectrum disorder and there are probably a spectrum of reasons why it's there in one person and not in the next. I'm going to leave that one to science to figure out why. I'm busy trying to teach the kiddo to look both ways when crossing the street and to tie his shoes. Oh and please spare me links proving theories one way or another. I'm not even going to look at them. All I ask is before you "share" some groundbreaking article on your Facebook feed for all to see, look where it's coming from. Anybody can make a web site and put articles up. It doesn't make it a medical journal just before it's online. That goes for BOTH sides of this debate.
9) "What's your favorite wine?"
Are you buying? Then it's the kind with alcohol in it. If you twisted my arm, I'd say a nice Pinot Noir or Shiraz wouldn't be refused.
10) "Does the kiddo really get up that early?"
LOOK WHEN I'M POSTING STUFF!!!! Why for the love of SLEEP would I ever make that up? Look at my eyes! Look at these bags!!! I could store my keys and cell phone in them they are so big. And don't you see other people posting right back saying "Yep up here too" and it's like 5AM. These are the hours I keep at French Fry Inc. My boss is a hard ass!
Bonus question "What do you do for fun?"
Talk to all of you. Blogging has been the best form of therapy yet. Well, the Prozac helps too but getting the words to the feelings, ahhhhh, that's the stuff. I like to cook, read, be snarky (it is too a hobby) and watch incredibly bad reality tv. Also SHOWTUNES! Love them all. Somebody asked me to pick my favorite. I can't. That's how addicted I am.
OK fries. I got a load of laundry to fold. That's all I got time for at the moment. Got others? Leave a comment and I'll hit ya back when I'm done matching the mountain of socks.
Monday, July 22, 2013
The Autism Rules
This blog has been such a big learning experience for me. My interactions with you here and on my Facebook page has really opened my eyes and help me put words to my feelings. In ways, it's great. Sometimes though, it's more frustrating than I ever could of imagined. Let me explain.
Yes, a large majority of my rants are just that, rants. Ramblings of an overtired mom who is just fumbling her way through this. Many of you seem to get where I'm coming from because you are just as lost as me. I have gotten great advice and I've gotten some WTF comments too. Not just stuff I disagree with but possible solutions to issues with the kiddo where I just want to say "Do you think I'm in charge here? I don't make the rules. My boss does". I bet your "boss" does too. Trust me, I'm not trying to do stuff the hard way. I'm lazy and my feet hurt.
There are just certain situations in our autism life where I have no control. Nada. None. Case in point. I lament the other day of having to replace the boy's beloved Cars DVD for the third time. Now before you go running to tell me how I should just download it to his iPad or how Disney has a damaged disc program, stop. It's not about if I know about theses answers or not. It's that they simply will not do. Trust me. I know about them. I've tried. The boy likes DVDs. He also has certain movies he will only watch on certain TVs. Yes, he gets that particular. Heck, one of the main reasons I got the iPad was so I could download on it, music and movies. However, to paraphrase the old song, he wants what he wants when he wants it. Or where he wants it and on the iPad ain't it.
The same with music. The kiddo has an extensive scratched up CD collection. Most of them used to be mine and my husband. Like most things with parenthood, nothing is really mine anymore except maybe my tampons and even those have been played with by the boy. I figured an iTunes list would help me banish the meltdowns over skipping CDs. Nope, not even close. He likes to put the CD in and hold the case. Then walk around the house with it and turn on his certain DVDs in his certain TVs and then play YouTube clips of his favorite commercial jingles on his iPad. ALL AT ONCE. Good times I tell ya. Good times. It's not unusual for me to find an empty Steve Windwood CD case in my bathroom sink. This is just what he does. No convincing him otherwise. What's my other option? Replace said skipping CDs. Sometimes we do. He's on copy number SIX of GLEE presents The Warblers. I pretty much paid for Ryan Murphy's summer vacation home. My other option? Listen to said skipping CD which turns the Greatest Hits of Cat Stevens into a DJ House Music club hit the way it bops all over the song. Peace Train gets funky y'all.
Some of you now get this. Either because your kid does something like that too or perhaps with a few tweaks of their own. Some of you get that's just how an Autism house rolls. This is where I say I don't make the rules. I don't have the autism so really how could I? Now I can make suggestions. I can try to organize the chaos that makes perfect sense to him. Or I could just let it ride and since the kiddo is 9, I'm letting more stuff like this ride. Although I do find myself following after him turning off all the things he just turned on but there are many days where I just am to tired to jump on the "Turn on all the things" exercise loop. I ask him to lower the volume, which he surprisingly does. I put in my ear buds and listen to my own tunes. In those moments I realize it's not worth rocking the boat and questioning the autism rules. Quirk on kiddo.
All I ask is this, before you spend the time typing me or any other blogger a long email or comment on how I can do things instead, remember the autism rules in your house. You'll notice that I am not asking for how to stop something. Trust me, I am blunt. I will flat out say what I need help with. I've been an autism mom long enough to know that. I also know dollars to donuts that you got some rules in your house that you wouldn't even dream of changing.
Stay quirky my fries. :-)
Yes, a large majority of my rants are just that, rants. Ramblings of an overtired mom who is just fumbling her way through this. Many of you seem to get where I'm coming from because you are just as lost as me. I have gotten great advice and I've gotten some WTF comments too. Not just stuff I disagree with but possible solutions to issues with the kiddo where I just want to say "Do you think I'm in charge here? I don't make the rules. My boss does". I bet your "boss" does too. Trust me, I'm not trying to do stuff the hard way. I'm lazy and my feet hurt.
There are just certain situations in our autism life where I have no control. Nada. None. Case in point. I lament the other day of having to replace the boy's beloved Cars DVD for the third time. Now before you go running to tell me how I should just download it to his iPad or how Disney has a damaged disc program, stop. It's not about if I know about theses answers or not. It's that they simply will not do. Trust me. I know about them. I've tried. The boy likes DVDs. He also has certain movies he will only watch on certain TVs. Yes, he gets that particular. Heck, one of the main reasons I got the iPad was so I could download on it, music and movies. However, to paraphrase the old song, he wants what he wants when he wants it. Or where he wants it and on the iPad ain't it.
The same with music. The kiddo has an extensive scratched up CD collection. Most of them used to be mine and my husband. Like most things with parenthood, nothing is really mine anymore except maybe my tampons and even those have been played with by the boy. I figured an iTunes list would help me banish the meltdowns over skipping CDs. Nope, not even close. He likes to put the CD in and hold the case. Then walk around the house with it and turn on his certain DVDs in his certain TVs and then play YouTube clips of his favorite commercial jingles on his iPad. ALL AT ONCE. Good times I tell ya. Good times. It's not unusual for me to find an empty Steve Windwood CD case in my bathroom sink. This is just what he does. No convincing him otherwise. What's my other option? Replace said skipping CDs. Sometimes we do. He's on copy number SIX of GLEE presents The Warblers. I pretty much paid for Ryan Murphy's summer vacation home. My other option? Listen to said skipping CD which turns the Greatest Hits of Cat Stevens into a DJ House Music club hit the way it bops all over the song. Peace Train gets funky y'all.
Some of you now get this. Either because your kid does something like that too or perhaps with a few tweaks of their own. Some of you get that's just how an Autism house rolls. This is where I say I don't make the rules. I don't have the autism so really how could I? Now I can make suggestions. I can try to organize the chaos that makes perfect sense to him. Or I could just let it ride and since the kiddo is 9, I'm letting more stuff like this ride. Although I do find myself following after him turning off all the things he just turned on but there are many days where I just am to tired to jump on the "Turn on all the things" exercise loop. I ask him to lower the volume, which he surprisingly does. I put in my ear buds and listen to my own tunes. In those moments I realize it's not worth rocking the boat and questioning the autism rules. Quirk on kiddo.
All I ask is this, before you spend the time typing me or any other blogger a long email or comment on how I can do things instead, remember the autism rules in your house. You'll notice that I am not asking for how to stop something. Trust me, I am blunt. I will flat out say what I need help with. I've been an autism mom long enough to know that. I also know dollars to donuts that you got some rules in your house that you wouldn't even dream of changing.
Stay quirky my fries. :-)
Tuesday, July 16, 2013
Are we there yet?
The worry is constant. The planning never ends. Is it ever enough? Will the crisis du jour be solved by bedtime? Are we there yet?
My eyes are focused on an end point in our autism journey which is ridiculous when I think about it. Like the job will ever be done! The autism is a part of him. I might as well be trying to end all of him if I try to end just a part of him. Some days it's really flipping hard. I got to allow myself the occasional pity party but also know when to put the fresh coat of lipstick and move on. I'm not sure when I will get to that final stage of acceptance. I just got to keep trying. We're not there yet.
There is so much he still can't do. I wonder if he will ever be able to do certain things. However, there are things he is doing now that I NEVER thought he could. Swim, bike riding, try new foods, and my personal favorite, have a temper tantrum versus a full on meltdown. Yep, that's right. I'm excited when he has a simple hissy fit. When I can just send him to his room to think about what he did and not have to worry if I have anymore spackle to patch up the soon to kicked in walls. A behavior that ends. Not one that just recharges itself in waves so it can go on and on. It doesn't happen all the time but it is slowly getting better. It's coming though but we're not there yet.
My eyes glaze over every time a new article comes out about the possible causes and treatments for autism and yet I still hover that mouse over the link to click. I never thought I would become so well versed in a language that some days I wish I did not have to speak. ABA, IEP, ESY, SPD, ASD, DSM and FBA etc. The simple act of reading yet another article can sometimes exhaust me to tears. I find myself slipping back into that newly diagnosed mother role and thinking "yes, this will be the one that explains it all." I haven't found that magical article yet. Have you? One of these days, I'll stop driving myself crazy with the should ofs, could ofs and would ofs but I'm not there yet.
When will I stop being angry? I'm angry a lot. I usually mask it with sarcasm but mainly because I know prison orange would look terrible with my skin tone and hair. Yes, sometimes I'm angry with autism even when I see the unique gifts and perspectives it gives my son. My neurology is different. It's just hard to understand fully and I resent that. I'm sure he's thinking the same about me. "Poor Mom. She just doesn't get it with her neurotypical brain." I'd like a day of no anger, of not having to explain him to world and the world to him. Forget tolerance! I just want plain damn acceptance. From the world and from my son. I want him to realize he's got to put up with some of our neurotypical requests and quirks. Just as much as we got to work and accommodate for him. We're not there yet.
I have said it before and I will say it again. Autism is the trip I didn't plan but I sure do love my tour guide. I follow his lead. Are we there yet kiddo? Am I a good travel buddy on this trip? Did I forget to pack anything? Sometimes I need to pull over at a rest stop for a break and a side of fries. You don't mind right? :-) We're almost there.
My eyes are focused on an end point in our autism journey which is ridiculous when I think about it. Like the job will ever be done! The autism is a part of him. I might as well be trying to end all of him if I try to end just a part of him. Some days it's really flipping hard. I got to allow myself the occasional pity party but also know when to put the fresh coat of lipstick and move on. I'm not sure when I will get to that final stage of acceptance. I just got to keep trying. We're not there yet.
There is so much he still can't do. I wonder if he will ever be able to do certain things. However, there are things he is doing now that I NEVER thought he could. Swim, bike riding, try new foods, and my personal favorite, have a temper tantrum versus a full on meltdown. Yep, that's right. I'm excited when he has a simple hissy fit. When I can just send him to his room to think about what he did and not have to worry if I have anymore spackle to patch up the soon to kicked in walls. A behavior that ends. Not one that just recharges itself in waves so it can go on and on. It doesn't happen all the time but it is slowly getting better. It's coming though but we're not there yet.
My eyes glaze over every time a new article comes out about the possible causes and treatments for autism and yet I still hover that mouse over the link to click. I never thought I would become so well versed in a language that some days I wish I did not have to speak. ABA, IEP, ESY, SPD, ASD, DSM and FBA etc. The simple act of reading yet another article can sometimes exhaust me to tears. I find myself slipping back into that newly diagnosed mother role and thinking "yes, this will be the one that explains it all." I haven't found that magical article yet. Have you? One of these days, I'll stop driving myself crazy with the should ofs, could ofs and would ofs but I'm not there yet.
When will I stop being angry? I'm angry a lot. I usually mask it with sarcasm but mainly because I know prison orange would look terrible with my skin tone and hair. Yes, sometimes I'm angry with autism even when I see the unique gifts and perspectives it gives my son. My neurology is different. It's just hard to understand fully and I resent that. I'm sure he's thinking the same about me. "Poor Mom. She just doesn't get it with her neurotypical brain." I'd like a day of no anger, of not having to explain him to world and the world to him. Forget tolerance! I just want plain damn acceptance. From the world and from my son. I want him to realize he's got to put up with some of our neurotypical requests and quirks. Just as much as we got to work and accommodate for him. We're not there yet.
I have said it before and I will say it again. Autism is the trip I didn't plan but I sure do love my tour guide. I follow his lead. Are we there yet kiddo? Am I a good travel buddy on this trip? Did I forget to pack anything? Sometimes I need to pull over at a rest stop for a break and a side of fries. You don't mind right? :-) We're almost there.
Wednesday, July 10, 2013
"I don't know how you do it"
Guess what Sunshine? Neither do I. I'm not saying this in a super humble, there, but for the grace of God, go I sort of way. I am saying this in the completely burnt out, oh my god he pooped his pants twice in an hour and now I have to give him a second bath kind of way. I do it because I have no other choice but to do it. If I don't do it, I would be some sort of monster. If I do what needs to be done, this token cliche phrase gets tossed at me. Let me translate that to what that means to me when I hear it.
"Thank God that ain't me." and you know what? I'd almost appreciate that honesty a little more. You think I got it harder/worse than you? Well, I don't think so. I just have it different than you.
My parenting to my son is different because of his needs but I am doing the same job as you. Each kid is a flipping snowflake, blah blah blah, you get what I'm saying right? I'm trying to make a point on this cliche phrase. I really don't want to use one. So why do I get put on the shelf of "Parenting All Stars Most High". Just because of a medical diagnosis? That's just odd to me. Maybe it's because he's the only kid I have. I just don't see why I have to get boxed into some Donna Reed "My, isn't she stoic" sort of category.
Maybe it's because I've seen the "looks" and gotten comments from strangers about my kid that make me question my failure as a parent more times than I can count. The women that stare at me as I lead my 9 year old son into a public restroom because he still does not have the communication skills or the sense of awareness to be left by himself in a men's room. (Screw you ladies. You are all in stalls anyway. He can't see anything and guess what? He doesn't care even if he did.) The "advice" that is offered to me that folks think is so helpful is usually anything but that. ("Oh he's in your bed nightly. You should stop that you know? Really? I had no idea. I just figured we do it this way. Co sleeping till he is 34.)
Let me not forget the joy and pain that is seen in online social media. If I am ever feeling to full of myself, I can just hop on Facebook, state an opinion and sit back to watch trolls feed off it till it's been ripped to shreds. Man, what is it about hiding behind that computer screen or smart phone and folks grow a pair of brass ones don't they? At the same time, I can write something like how my son required two baths in a single hour and have countless other parents give me the cyber fist bump through the screen. They've been there. They've done that. They're still buying baby butt wipes for a baby that is rapidly approaching ten.
I don't know how anyone does it, this parenting thing. It's the hardest job I have ever done. Just learning to accept the fact that even while I think I have a moment of rest, (going to the bathroom) I'm not really. He's always there. I'm always "on call" so to speak. There is no end in sight. There is no punching out. The pay sucks and he refuses to match my 401K. Parenting is now just another involuntary action to my being. Even when I die, I will probably come back to haunt him and tell him in a ghostly tone to drink his milk and to leave the dog alone. Frankly I'd rather not think of the dying part as I can't. No really I can't. See, that's one of those different moments I was telling you about. Don't feel like you got to be sorry for me. It is what it is. Autism teaches me that every day.
How do I do it? A diet of coffee, fries and wine. An exercise routine of running after him to put on pants in the morning followed by lifting his melting down self off the floor when he's completely overwhelmed. Add a heavy dash of sarcasm and little sleep which helps keeps me a little dizzy and possibly deluded into thinking everything is going to be just fine.
Just don't put me on that Supermom pedestal. Just let me sit on the Tired Mom couch in my yoga pants watching Bravo reality TV.
"Thank God that ain't me." and you know what? I'd almost appreciate that honesty a little more. You think I got it harder/worse than you? Well, I don't think so. I just have it different than you.
My parenting to my son is different because of his needs but I am doing the same job as you. Each kid is a flipping snowflake, blah blah blah, you get what I'm saying right? I'm trying to make a point on this cliche phrase. I really don't want to use one. So why do I get put on the shelf of "Parenting All Stars Most High". Just because of a medical diagnosis? That's just odd to me. Maybe it's because he's the only kid I have. I just don't see why I have to get boxed into some Donna Reed "My, isn't she stoic" sort of category.
Maybe it's because I've seen the "looks" and gotten comments from strangers about my kid that make me question my failure as a parent more times than I can count. The women that stare at me as I lead my 9 year old son into a public restroom because he still does not have the communication skills or the sense of awareness to be left by himself in a men's room. (Screw you ladies. You are all in stalls anyway. He can't see anything and guess what? He doesn't care even if he did.) The "advice" that is offered to me that folks think is so helpful is usually anything but that. ("Oh he's in your bed nightly. You should stop that you know? Really? I had no idea. I just figured we do it this way. Co sleeping till he is 34.)
Let me not forget the joy and pain that is seen in online social media. If I am ever feeling to full of myself, I can just hop on Facebook, state an opinion and sit back to watch trolls feed off it till it's been ripped to shreds. Man, what is it about hiding behind that computer screen or smart phone and folks grow a pair of brass ones don't they? At the same time, I can write something like how my son required two baths in a single hour and have countless other parents give me the cyber fist bump through the screen. They've been there. They've done that. They're still buying baby butt wipes for a baby that is rapidly approaching ten.
I don't know how anyone does it, this parenting thing. It's the hardest job I have ever done. Just learning to accept the fact that even while I think I have a moment of rest, (going to the bathroom) I'm not really. He's always there. I'm always "on call" so to speak. There is no end in sight. There is no punching out. The pay sucks and he refuses to match my 401K. Parenting is now just another involuntary action to my being. Even when I die, I will probably come back to haunt him and tell him in a ghostly tone to drink his milk and to leave the dog alone. Frankly I'd rather not think of the dying part as I can't. No really I can't. See, that's one of those different moments I was telling you about. Don't feel like you got to be sorry for me. It is what it is. Autism teaches me that every day.
How do I do it? A diet of coffee, fries and wine. An exercise routine of running after him to put on pants in the morning followed by lifting his melting down self off the floor when he's completely overwhelmed. Add a heavy dash of sarcasm and little sleep which helps keeps me a little dizzy and possibly deluded into thinking everything is going to be just fine.
Just don't put me on that Supermom pedestal. Just let me sit on the Tired Mom couch in my yoga pants watching Bravo reality TV.
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