Today I got a phone call from my son's case worker from school confirming who would be his teacher come summer. The big switch is now real. I knew it was coming. We talked about it in the IEP but, with the days running on full speed, the end of the year is looming. Extended School Year (ESY) aka "Summer School" will be here in a hop, skip and a jump. Normally I don't mind. Heck, I'm usually looking forward to it. Gives me a chance to rest up after "vacation". (which I think we can all agree vacations are more like military boot camps for parents then they are relaxing) This July the kiddo will start with a new teacher. One he will then go to in the fall as well. This poor caseworker, who probably thought she was going the extra mile by calling me at home instead of sending out a form letter, heard me get so quiet on the phone that she actually thought the line had cut out. Nope, I was still there. I was just busy being speechless and realizing that this change is about to exceed the limits of my medication.
He's switched them before but there was something different about Mrs. M. I knew I liked her right from the start because she wasn't about to hear it that he didn't want to be at school. For the past year, as he finally started to get more and more verbal, he came up with some fantastic excuses for not wanting to go. ("Put away school!" "Want Saturday!! No Monday!!" "Turn off School!") The year prior he had greeted the previous teacher with "NOOOOOO SHE SHE!!!" (which was his way of saying her name) every single morning.
Mrs. M not only wasn't having it and her attitude about how awesome school was caught on. She didn't meet him head on with stubbornness. She helped him learn what his feelings were and how to identify them. For that I am truly and forever grateful. He finally had a name to go with the way he was feeling. I suddenly had a kiddo coming home telling me he felt happy or sad or pissed off! (OK in more age appropriate words but it was getting a little Dr Suess like here with the sad, mad, bad, glad) She helped label and organize those mixed up emotions flying around his brain.
She made him feel pride. Pride in his work. Pride in his actions. Pride in himself. For a kiddo riddled with more anxiety than any one person should have, oh he needed this. To have him tell me "I feel proud of you!" when he was pleased was a delight. He knew that was the best compliment. She gave him trust. She trusted jobs to him. She saw he loved to work and she put him to it. She made him the classroom lackey. He was sent down every morning to the office for attendance. Off to the cafeteria to drop off the lunch orders. Then over to the kindergarten to drop off the milks for the "little kids" as he called them. Needed to get a message to another teacher? Send the kiddo. Through these outings, another great gift arrived. Kiddo started getting more social. Actively engaging and saying "Hi!" to all he encountered.
How did she do all this? Well, the music just flowed through this woman. Singing was a big part of it. She's a big music lover and she saw that with him too. In the two years she has had him, anything new has first been brought to the kiddo in song. It's like she's a walking musical in there! She totally understood his love for it and she ran with it. Telling time, money, order of the months, even writing his name became a song. They may never win a Grammy but they are top hits in this house. I'll probably be singing "Hip Hop O'clock" in the nursing home because of her.
Now the time has come for him to move on though. I know it's a good thing for him too even though the changes are scary. I also know she knows how I feel about it all. You see, this year she told me how her own son is on the spectrum. That the kiddo reminds her a lot of her son at that age. A whole new level of respect washed over me when I found out. I thought "How on earth? All day with autism and go home to MORE AUTISM!?!?!" Seriously, how does she not burn out? I almost want to ask her "Are you on really good meds and if so, can I have some?" She's is aces in my book. I don't know how she does it but damn am I lucky that she does and she did for my kiddo. Think about it. Writing up and teaching a bunch of IEPs to go home and make sure your kid's IEPs are being done. I am in awe.
I'm sure the next teacher is swell. I'm sure she'll do great things. If not, I'm just going to insist Mrs. M be his teacher till he's 21. Perfectly reasonable demand in the IEP no? OK I won't but Mrs. M, you set the bar high. I hope that new gal knows what kind of act she's following. She better rest up on that break we have. Organize dancing poodles for her class for some sort of science experiment. Bring your "A" game newb. The kiddo goes big.
We had some emotional texting last night. That's right folks. Mrs. M and I text each other. How many teachers do you know that do that? So often she would text me a cute picture of my kiddo or even video of him doing something. To see into his little world of school was a gift! She let me know she's got my back and will help with the transitions. She knows what it's like to sit on my side of the IEP table. I love her. Why can't she live with me? I'm sure her family is nice but we got a pool. They could visit.
I told the kiddo last night about the big switch. He immediately laughed it off. However, this morning over breakfast, he repeated to me who his new teacher would be in the summer. He seemed pleased. One more gift she has given him. Helping him learn how to accept big changes even when that change is loosing her as a teacher.
OK, off to write a social story for myself to help accept this change. ;-)
Wednesday, June 12, 2013
Tuesday, June 11, 2013
The Waiting Room Warriors
I love my fellow ASD parents like an ASD parent loves a nap or a cup of coffee or both. These are the folks who just get it when I make a poop joke or post from the dark of my son's room while I'm waiting forever for him to go to sleep. They are all over the world. Up at all hours. My comrades in PEC pictures and social stories. A troop of Waiting Room Warriors in the trenches with me, forever waiting for their kiddo's session to be done.
I've been the kiddo's mom now for nine years and I've been "waiting" for him to get done with therapy since he was twenty two months. I've seen my share of waiting rooms and yes, to amuse myself or keep me from going insane, I rate them in my head. Call this the Zagat guide for making a kick ass waiting room. I know therapists read this. (Hello folks who treat the Kiddo!!!!)
First, let's cover magazines and reading materials. Screw TIME and other high brow stuff. Lots of copies of PEOPLE, Us Weekly and the like please. Maybe throw in a Life & Style to mix it up. I have enough serious stuff I deal with on a day to day basis. This is my one chance to escape reality for a bit and read some fluff. Considering I"m usually listening to my kiddo yelling about something during the session, I really can't concentrate on anything more in depth than whatever model Adam Levine is dating that week. Plus it's not like I can flip through these bubble gum rags when I'm in line shopping with the Kiddo. I'm usually busy containing his destruction while we wait. So do me a favor get more of Entertainment Weekly, less National Geographic.
Second, enough room to sit. I'm not leaving and most of the parents that are there aren't either. They got an hour to kill. How about some comfy seating? You know what would rock? Just clear out the chairs and throw all those crash pads and bean bags in there! Oh that would be sweet! I'd probably fall asleep but I'm sure if I didn't snore to loudly somebody might spoon with me. Pass out a few weighted blankets while you're at it. It's usually Arctic during the summer months when the AC is blasting. Oh that would be cozy.
Third, a small table and chairs for the siblings. Now I am lucky. I only have to entertain myself for an hour when I go to therapies with the kiddo but for those moms who got a sibling or two in tow, I salute you my fellow Waiting Room Warrior. You got to keep them busy in a pretty boring place. "Here kids, let's have fun waiting!" Oh and do you see how they look in those OT therapy rooms with the swings? You know they are just thinking "why can't I go in there too?" I see so many of them doing homework on the floor while they wait. Try writing on a carpet on a worksheet. Yeah, not so great.
(Side note, Therapy places. You ever think about renting those gyms out for a pizza party? I'm just saying it would be a crowd pleaser for the ASD set)
Fourth, Wifi!!! Dudes, how else do you think all us bloggers get any work done? My son's place has it! It rocks! Seriously, I wanted to kiss them on the lips the day they had a sign up announcing it! Not to mention, I know there are a lot of working outside the home parents, they need to catch up on work and most likely took time off to get their kiddo to that appointment. Spot them some internet would ya? You will have a much happier parent to work with if they got the stress release of beating that level of Candy Crush they were stuck on for two weeks and then got to brag on Facebook about it.
Fifth, parking. Ample parking. Make sure your office building has it. When my son's therapists moved to a new building recently that had GOBS more I nearly wept with joy. Cause you know all know it just takes one Mom driving a big ass SUV who can't park and screw up parking in a little lot for EVERYONE! (stay between the two lines!!!!!)
Sixth, a big huge window of your therapy room. Yep, that's right, I want to see what you are doing in there. Yes I will duck my head down from time to time so I don't distract my kiddo but dammit I want to know what's going on back there. For all I know you could be filing your nails while my kiddo spins on a swing. I'm nosy. I want to know. Not to mention it's super insightful to see how my son acts with other folks. If he's being a complete pain in the arse, I will thoughtfully give him the "wait till we get home" death stare and perhaps it will jolt some sense into him for ya. :-)
Seven, coffee would be nice. Wine would be nicer.
I've been the kiddo's mom now for nine years and I've been "waiting" for him to get done with therapy since he was twenty two months. I've seen my share of waiting rooms and yes, to amuse myself or keep me from going insane, I rate them in my head. Call this the Zagat guide for making a kick ass waiting room. I know therapists read this. (Hello folks who treat the Kiddo!!!!)
First, let's cover magazines and reading materials. Screw TIME and other high brow stuff. Lots of copies of PEOPLE, Us Weekly and the like please. Maybe throw in a Life & Style to mix it up. I have enough serious stuff I deal with on a day to day basis. This is my one chance to escape reality for a bit and read some fluff. Considering I"m usually listening to my kiddo yelling about something during the session, I really can't concentrate on anything more in depth than whatever model Adam Levine is dating that week. Plus it's not like I can flip through these bubble gum rags when I'm in line shopping with the Kiddo. I'm usually busy containing his destruction while we wait. So do me a favor get more of Entertainment Weekly, less National Geographic.
Second, enough room to sit. I'm not leaving and most of the parents that are there aren't either. They got an hour to kill. How about some comfy seating? You know what would rock? Just clear out the chairs and throw all those crash pads and bean bags in there! Oh that would be sweet! I'd probably fall asleep but I'm sure if I didn't snore to loudly somebody might spoon with me. Pass out a few weighted blankets while you're at it. It's usually Arctic during the summer months when the AC is blasting. Oh that would be cozy.
Third, a small table and chairs for the siblings. Now I am lucky. I only have to entertain myself for an hour when I go to therapies with the kiddo but for those moms who got a sibling or two in tow, I salute you my fellow Waiting Room Warrior. You got to keep them busy in a pretty boring place. "Here kids, let's have fun waiting!" Oh and do you see how they look in those OT therapy rooms with the swings? You know they are just thinking "why can't I go in there too?" I see so many of them doing homework on the floor while they wait. Try writing on a carpet on a worksheet. Yeah, not so great.
(Side note, Therapy places. You ever think about renting those gyms out for a pizza party? I'm just saying it would be a crowd pleaser for the ASD set)
Fourth, Wifi!!! Dudes, how else do you think all us bloggers get any work done? My son's place has it! It rocks! Seriously, I wanted to kiss them on the lips the day they had a sign up announcing it! Not to mention, I know there are a lot of working outside the home parents, they need to catch up on work and most likely took time off to get their kiddo to that appointment. Spot them some internet would ya? You will have a much happier parent to work with if they got the stress release of beating that level of Candy Crush they were stuck on for two weeks and then got to brag on Facebook about it.
Fifth, parking. Ample parking. Make sure your office building has it. When my son's therapists moved to a new building recently that had GOBS more I nearly wept with joy. Cause you know all know it just takes one Mom driving a big ass SUV who can't park and screw up parking in a little lot for EVERYONE! (stay between the two lines!!!!!)
Sixth, a big huge window of your therapy room. Yep, that's right, I want to see what you are doing in there. Yes I will duck my head down from time to time so I don't distract my kiddo but dammit I want to know what's going on back there. For all I know you could be filing your nails while my kiddo spins on a swing. I'm nosy. I want to know. Not to mention it's super insightful to see how my son acts with other folks. If he's being a complete pain in the arse, I will thoughtfully give him the "wait till we get home" death stare and perhaps it will jolt some sense into him for ya. :-)
Seven, coffee would be nice. Wine would be nicer.
Friday, June 7, 2013
Come on feel the noise!
Quiet Riot has nothing on the kiddo. Nada!
It's got to be payback for the teen years right? When my brother and I played "Stereo Wars" from our bedrooms. He was blasting The Police or U2. I had whatever hair band with a pound of make up and spandex du jour going. I'm really wondering how my parents aren't both deaf. We both have kids now. My brother is getting his payback of playing "Synchronicity" constantly. His daughter likes One Direction. A LOT. Lord Sweet Mercy on his soul.
So what's my payback for playing "Wanted Dead or Alive" ten thousand times in a span of an hour? Constant ear splitting, brain melting, dear God where are my ear buds, noise. All sorts of noise. From him or from the four different electrical appliances he likes to run at the same time at any given moment. I bet you thought your first rock concert was noisy. Living with the kiddo is like living at the Lollapalooza 92 tour when the Red Hot Chili Peppers took the stage. ALL THE DAMN TIME.
His favorite stim noise is to screech. He screeches when happy or sad or just to amuse himself. It kind of sounds like a cross between a camel giving birth and the noise you might make if stabbed with a rusty shank. Not only is this god awful to hear but it's also damaging his vocal cords a ton. So while I'm all for letting him stim with a good hand flap or pacing up and down my hallway from time to time to self regulate, "NO NOISES" is said quite a bit in this house. I'm really surprised that both dogs haven't started saying it too. Maybe I'll just play it on a infinite loop. It might be easier. As I have and the kiddo have worked so hard to get him to "use his words" this makes me want to dive off the deep end and let's face it, I didn't have far to go to begin with.
Plus, lets add running ALL THE ELECTRONICS!!! Let's get that TV blaring. Turn on the portable DVD player with something else. Hop on the iPad and turn up the YouTube. Wait! Not done. Let's get Mama's or Daddy's smart phone and play some videos of himself. ALL AT THE SAME TIME!!!! I'm pretty sure they said this type of activity was torture with the Geneva Convention and yet on any given day, that's life at French Fry Inc.
And you haven't LIVED until you get woken up by James Taylor's Greatest Hits blasting in your ear. Anytime I hear "Fire and Rain" I now get the shakes. He especially loves to play the CD of it. You know, the one he's scratched up beyond all recognition and skips all over the place. Yeah we've got it downloaded on his iPad but playing it on the CD player is better? More mind numbing? Fun to watch Mama twitch when it skips? I'm not sure. He hasn't let me in on that. I must not be sophisticated enough to understand.
So yeah, anytime people are like "Oh girl I miss my kids so much when they go to school", me? Yeah not so much so. Don't get me wrong. I miss him. But the noise? Not so much so. Sweet Jesus, thank you for making him the county's problem till 3.
At least eating another side of fries is quiet.
It's got to be payback for the teen years right? When my brother and I played "Stereo Wars" from our bedrooms. He was blasting The Police or U2. I had whatever hair band with a pound of make up and spandex du jour going. I'm really wondering how my parents aren't both deaf. We both have kids now. My brother is getting his payback of playing "Synchronicity" constantly. His daughter likes One Direction. A LOT. Lord Sweet Mercy on his soul.
So what's my payback for playing "Wanted Dead or Alive" ten thousand times in a span of an hour? Constant ear splitting, brain melting, dear God where are my ear buds, noise. All sorts of noise. From him or from the four different electrical appliances he likes to run at the same time at any given moment. I bet you thought your first rock concert was noisy. Living with the kiddo is like living at the Lollapalooza 92 tour when the Red Hot Chili Peppers took the stage. ALL THE DAMN TIME.
His favorite stim noise is to screech. He screeches when happy or sad or just to amuse himself. It kind of sounds like a cross between a camel giving birth and the noise you might make if stabbed with a rusty shank. Not only is this god awful to hear but it's also damaging his vocal cords a ton. So while I'm all for letting him stim with a good hand flap or pacing up and down my hallway from time to time to self regulate, "NO NOISES" is said quite a bit in this house. I'm really surprised that both dogs haven't started saying it too. Maybe I'll just play it on a infinite loop. It might be easier. As I have and the kiddo have worked so hard to get him to "use his words" this makes me want to dive off the deep end and let's face it, I didn't have far to go to begin with.
Plus, lets add running ALL THE ELECTRONICS!!! Let's get that TV blaring. Turn on the portable DVD player with something else. Hop on the iPad and turn up the YouTube. Wait! Not done. Let's get Mama's or Daddy's smart phone and play some videos of himself. ALL AT THE SAME TIME!!!! I'm pretty sure they said this type of activity was torture with the Geneva Convention and yet on any given day, that's life at French Fry Inc.
And you haven't LIVED until you get woken up by James Taylor's Greatest Hits blasting in your ear. Anytime I hear "Fire and Rain" I now get the shakes. He especially loves to play the CD of it. You know, the one he's scratched up beyond all recognition and skips all over the place. Yeah we've got it downloaded on his iPad but playing it on the CD player is better? More mind numbing? Fun to watch Mama twitch when it skips? I'm not sure. He hasn't let me in on that. I must not be sophisticated enough to understand.
So yeah, anytime people are like "Oh girl I miss my kids so much when they go to school", me? Yeah not so much so. Don't get me wrong. I miss him. But the noise? Not so much so. Sweet Jesus, thank you for making him the county's problem till 3.
At least eating another side of fries is quiet.
Monday, June 3, 2013
Hey Autism! Let's do lunch!
It was a typical morning at French Fry Inc. Refueling our tired brains with some coffee. Regaling my husband how I was mad at him when I woke up because in my dream the night before he had divorced me and wanted to know when he would. He dryly replied "Not today." and then I got hustling to get that kiddo ready and out the door.
Sometimes in the mornings I have no idea how long it's going to take him to get ready. More often than not, there is some extra wiggle room. I'm grateful for it but it also means I have to keep him entertained and out of trouble till the bus comes all the while getting myself dressed. I try not to be the hot mess Mama walking him to the bus. Doesn't mean full make up and hooker heels but I try a quick shower (OK quick spritz of dry shampoo) and make sure I'm dressed in something that looks like I care somewhat about how I look. ( Yeah even the bra goes on. I'm fancy like that.)
Usually I whip out the iPad and he's pretty content. It might mean interrupting me five or six times to show me some quick video I took of him that he thinks is the greatest thing ever, which of course, it is. Today I remembered the new school lunch menu was probably out and I quickly pulled it up for him. This kiddo LOVES the lunch menu and a new one to study and memorize, well that ought to buy me a few minutes to go pee alone.
That was until he realized one day did not have the meal listed. RING THE ALARM!!!!!
Every Thursday, his school does some sort of breakfast for lunch. It rotates between pancakes, french toast and waffles. For whatever reason, that last Thursday of the month just listed "Breakfast food". I'm not sure if the lunch lady was like "Screw it. It's gonna be the last week of school. We'll see what we got left" when she was typing it. All I know is it caused a anxiety attack in a certain 9 year old.
I know autism is a spectrum disorder and most days it's kicking my arse in a spectrum of different ways. I really was in no mood for a meltdown on what he was going to have for lunch three weeks from now. Mama Fry was tired from staying up to late last night watching Bravo reality TV. I had 30 minutes before that bus would be rumbling down my street. I had to talk this kiddo off the ledge over the mystery of french toast or waffles being served.
So I just put down my toothbrush and said "Oh??? It's going to be a surprise!!! Oh my gosh! That's so cool!!"
And the kiddo, who equates surprises with parties was like "Oh yeahhhhhh!"
Sensing I was on the right track I decided to play into his ego. "And you'll know before me and then I'll have to guess when you get off the bus that day. You'll know but I won't!"
I can hear the gears turning in his head and he delights on pulling one over on me. Knowledge over mom versus having a hissy fit about not knowing what he will have for lunch three weeks from now.
"LUNCH SURPRISE!!! LUNCH SURPRISE!!!" and he runs down the hallway away from me and thankfully, a meltdown.
Crisis averted, for now. Phew! A year ago, I would of been pulling him off the ceiling to get him on the bus. There would of been a flurry of emails to his teacher regarding said meltdown. She probably would of asked the lunch lady for a lunch confirmation. This is just life with autism some days. Always on my toes.
I think I'll have pancakes for lunch today. Suddenly, I'm in the mood and it's not even a Thursday. :-)
Sometimes in the mornings I have no idea how long it's going to take him to get ready. More often than not, there is some extra wiggle room. I'm grateful for it but it also means I have to keep him entertained and out of trouble till the bus comes all the while getting myself dressed. I try not to be the hot mess Mama walking him to the bus. Doesn't mean full make up and hooker heels but I try a quick shower (OK quick spritz of dry shampoo) and make sure I'm dressed in something that looks like I care somewhat about how I look. ( Yeah even the bra goes on. I'm fancy like that.)
Usually I whip out the iPad and he's pretty content. It might mean interrupting me five or six times to show me some quick video I took of him that he thinks is the greatest thing ever, which of course, it is. Today I remembered the new school lunch menu was probably out and I quickly pulled it up for him. This kiddo LOVES the lunch menu and a new one to study and memorize, well that ought to buy me a few minutes to go pee alone.
That was until he realized one day did not have the meal listed. RING THE ALARM!!!!!
Every Thursday, his school does some sort of breakfast for lunch. It rotates between pancakes, french toast and waffles. For whatever reason, that last Thursday of the month just listed "Breakfast food". I'm not sure if the lunch lady was like "Screw it. It's gonna be the last week of school. We'll see what we got left" when she was typing it. All I know is it caused a anxiety attack in a certain 9 year old.
I know autism is a spectrum disorder and most days it's kicking my arse in a spectrum of different ways. I really was in no mood for a meltdown on what he was going to have for lunch three weeks from now. Mama Fry was tired from staying up to late last night watching Bravo reality TV. I had 30 minutes before that bus would be rumbling down my street. I had to talk this kiddo off the ledge over the mystery of french toast or waffles being served.
So I just put down my toothbrush and said "Oh??? It's going to be a surprise!!! Oh my gosh! That's so cool!!"
And the kiddo, who equates surprises with parties was like "Oh yeahhhhhh!"
Sensing I was on the right track I decided to play into his ego. "And you'll know before me and then I'll have to guess when you get off the bus that day. You'll know but I won't!"
I can hear the gears turning in his head and he delights on pulling one over on me. Knowledge over mom versus having a hissy fit about not knowing what he will have for lunch three weeks from now.
"LUNCH SURPRISE!!! LUNCH SURPRISE!!!" and he runs down the hallway away from me and thankfully, a meltdown.
Crisis averted, for now. Phew! A year ago, I would of been pulling him off the ceiling to get him on the bus. There would of been a flurry of emails to his teacher regarding said meltdown. She probably would of asked the lunch lady for a lunch confirmation. This is just life with autism some days. Always on my toes.
I think I'll have pancakes for lunch today. Suddenly, I'm in the mood and it's not even a Thursday. :-)
Friday, May 31, 2013
Living on a prayer with Autism
Why yes I am using another 80's hair band song for a post title! Frankly being from New Jersey I'm surprised a Bon Jovi reference hasn't happened sooner. Admit it, you love me and my so cheesy you can put it on a cracker and call it a snack taste in music.
Anyway, consider this post my token religion post. As little as I claim to know about autism, I know even less with religion. So I'm going to just rattle off what happened and you do with it what you will.
I get a lot of emails as "Mama Fry". Many asking for help or advice but quite a few are nice "gee ain't ya a swell gal, wish I could share a box of wine with you" types. I love those and not just cause wine is involved. Honest! It makes me feel good to know that I'm not alone on this journey. There are folks out there just like me. Inappropriate, sarcastic and tired. We may be sleep deprived but dammit we are a good time when we get a break. Be it a night out with the girls or hiding in your bathroom for five minutes claiming stomach distress while your family is whining they don't like what you made for dinner.
Some folks even write me that they are praying for me and my kiddo. That's pretty nice of them. They don't know me or us really other than what I tell you. Granny Fry didn't raise no fool. Heck it was Great Granny's and her's constant novenas to St. Jude, the patron saint of Impossible Causes, that helped me pass my math classes in school. So when someone says they are, I say thank you. But an email really got my Irish up today. To make a long story short, yadda yadda yadda, blah, blah, blah
"Praying away the autism illness"
What the what?!?!?!?!?!? Did she just? Oh no she didn't!!!! Aw Hell No! Autism isn't a cold! She better go thank the good Lord I wasn't in the room with her when I read this! Nobody is going to believe this one. Quick, let me copy and paste this and put it on my facebook profile page so other folks can see this. (which is what I did. Yeah I'm a piece of work like that but really that doesn't surprise you does it?)
I'm pretty sure no matter how hard I pray or whatever god or goddess I pray to, autism isn't going away. If you really want to pray for me or any parent who has a child with autism, here's a list of good things to pray for us.
Pray for us that we get four to five consecutive hours of sleep a night. So we may be rested enough to do our jobs as parents. To get the kiddos out the door to school and ourselves off to work, be it inside or outside the home.
Pray for us that we may have patience. Gobs and gobs of patience. For we get gobs and gobs of unsolicited advice and judgement pretty much every day. Coupled with the fact that we do need to use what little patience we have to raise our kids who come with extremely unique challenges. Sometimes we get emails from well meaning people that makes our blood pressure skyrocket. (see the above bold print statement)
Pray for us that we don't have snap. That we have compassion for our kids, who sometimes cannot fully explain to us in terms we can understand what it is that they are going through.
Pray for us that our school districts can provide the appropriate services our kids need.
Pray for us that are married that the stress of it all doesn't take a toll on the relationship because damn it sure does. Can I get an Amen on that?
Pray for us that despite one bad day that we will go to bed (eventually) and wake up knowing tomorrow is a new day and it can be better than the last.
Pray for us that we have the endurance to get our kiddos to the therapies, doctor appointments and all the services they need. Especially that we get them to the right place on the right day.
Pray for us that we can still keep our humor despite what life throws at us.
Pray for us that no matter how frustrated we might get with autism, we remember autism is a part of child we love very much. It's not ALL of them, just a part of them. Unconditional love means you love all the parts, even the autism.
So you see, I'm not so interested in praying away a part of my kiddo. Would I like life to be easier for him? Hell yeah but praying away a part of him, no thanks. That's like trying to pray away freckles or eye color. Can't happen. Won't happen. Let's focus those prayers on something else.
Like praying Mama Fry wins the lottery. :-)
Anyway, consider this post my token religion post. As little as I claim to know about autism, I know even less with religion. So I'm going to just rattle off what happened and you do with it what you will.
I get a lot of emails as "Mama Fry". Many asking for help or advice but quite a few are nice "gee ain't ya a swell gal, wish I could share a box of wine with you" types. I love those and not just cause wine is involved. Honest! It makes me feel good to know that I'm not alone on this journey. There are folks out there just like me. Inappropriate, sarcastic and tired. We may be sleep deprived but dammit we are a good time when we get a break. Be it a night out with the girls or hiding in your bathroom for five minutes claiming stomach distress while your family is whining they don't like what you made for dinner.
Some folks even write me that they are praying for me and my kiddo. That's pretty nice of them. They don't know me or us really other than what I tell you. Granny Fry didn't raise no fool. Heck it was Great Granny's and her's constant novenas to St. Jude, the patron saint of Impossible Causes, that helped me pass my math classes in school. So when someone says they are, I say thank you. But an email really got my Irish up today. To make a long story short, yadda yadda yadda, blah, blah, blah
"Praying away the autism illness"
What the what?!?!?!?!?!? Did she just? Oh no she didn't!!!! Aw Hell No! Autism isn't a cold! She better go thank the good Lord I wasn't in the room with her when I read this! Nobody is going to believe this one. Quick, let me copy and paste this and put it on my facebook profile page so other folks can see this. (which is what I did. Yeah I'm a piece of work like that but really that doesn't surprise you does it?)
I'm pretty sure no matter how hard I pray or whatever god or goddess I pray to, autism isn't going away. If you really want to pray for me or any parent who has a child with autism, here's a list of good things to pray for us.
Pray for us that we get four to five consecutive hours of sleep a night. So we may be rested enough to do our jobs as parents. To get the kiddos out the door to school and ourselves off to work, be it inside or outside the home.
Pray for us that we may have patience. Gobs and gobs of patience. For we get gobs and gobs of unsolicited advice and judgement pretty much every day. Coupled with the fact that we do need to use what little patience we have to raise our kids who come with extremely unique challenges. Sometimes we get emails from well meaning people that makes our blood pressure skyrocket. (see the above bold print statement)
Pray for us that we don't have snap. That we have compassion for our kids, who sometimes cannot fully explain to us in terms we can understand what it is that they are going through.
Pray for us that our school districts can provide the appropriate services our kids need.
Pray for us that are married that the stress of it all doesn't take a toll on the relationship because damn it sure does. Can I get an Amen on that?
Pray for us that despite one bad day that we will go to bed (eventually) and wake up knowing tomorrow is a new day and it can be better than the last.
Pray for us that we have the endurance to get our kiddos to the therapies, doctor appointments and all the services they need. Especially that we get them to the right place on the right day.
Pray for us that we can still keep our humor despite what life throws at us.
Pray for us that no matter how frustrated we might get with autism, we remember autism is a part of child we love very much. It's not ALL of them, just a part of them. Unconditional love means you love all the parts, even the autism.
So you see, I'm not so interested in praying away a part of my kiddo. Would I like life to be easier for him? Hell yeah but praying away a part of him, no thanks. That's like trying to pray away freckles or eye color. Can't happen. Won't happen. Let's focus those prayers on something else.
Like praying Mama Fry wins the lottery. :-)
Wednesday, May 29, 2013
A good time with Autism
Is he having a good time? Is he having fun? Is he enjoying this moment that we have planned for, read social stories about, recited the schedule of events till I was blue in the face? Is this everything I hyped it up to be? A lot of the times, I've got no flipping clue. None.
Case in point. A few weeks ago my town had one of those "Touch A Truck" events. Great concept. Roll in a ton of firetrucks, buses, police cars, construction vehicles, etc and let kids go hog wild. Climb all over them! Honk the horns! Flash the lights! Plus, do it as many times as you want because the event is free! It's a win win!
In true French Fry Inc form we approach this event with care and planning. Tell him to soon that it's coming, he will drive himself into a frenzy waiting for it. If I don't give him enough time however, meltdown city. This ain't my first rodeo. I'm kind of getting good on the timing. The DATE becomes etched in the stone or in kiddo and we pray like crazy that the thing doesn't rain out. Hell hath no fury like a kiddo off his schedule due to rain. I will just be instructed to turn it off. So there are many conversations on what we will see, what will he go on first, what vehicles he wants me to take pictures of that I know later he will pour over on his ipad with great obsession. Finally the day arrives! The weather couldn't be more perfect. Not to hot. Not to cold. Sunny without a cloud in the sky. He happily drives with us over to where it is AND he is...
Stunned Silent.
He does run around with a purpose. Darting to each thing but I can tell he's doing the check list in his head of what he thinks he HAS to see. I'm praying that all the things are there or it will get ugly fast. He quickly climbs aboard...
A school bus.
Yes, a bus. The very vehicle that he rides on five days a week all year long. A bus he has ridden on since the day after he turned 3. All this choice. A school bus. It's not even the driver's seat he goes for. Nope, purposely walking toward some seat in the middle which was thankfully vacant. I suspect he remembers riding on that one from a class trip. Maybe one that happened years ago. Most of the other kids climbing aboard are much younger than him. I suspect they are the younger siblings who watch their brothers and sisters go off to school with envy. My boy is just there. Quiet. Sitting. To the point where we have to give him a timed countdown of when to get off and go look at something else.
He was a good sport and did so but after every venture to a new vehicle we had to return to the bus. There was a safety to it. A comfort I suppose. I know a few years ago I would of gotten frustrated and said "Let's go home. This is ridiculous. He goes on one every day." Now? I'm just like "Well he's not screaming and we're out of the house so I think he's having fun?" The whole time he's still very quiet. Granted the whole event is really effing noisy so I suspect that this was his own little sensory respite he built for himself. Check out noisy other new thing, then retreat to the bus. Whatever, it was working for him. It didn't cost me a dime. So what if we went on the bus 42 times in the span of an hour?
I did manage on that last trip on it to get him in the drivers seats. He approached it with such reverence and seemed quite in awe sitting at it. Part of me was thinking "Come on kiddo, lay on that horn! I know ya wanna!" That's not his style though. He was to busy taking it all in.
We retired after to some fine dining at a fast food eatery. There, I watched him slowly come down from his quiet high for lack of better words. He started finally talking about what he had just seen. A more relaxed but joyful tone returns to his voice and he is smiling. Yep, he had a good time. Sometimes I just got to trust the way he does things and how he handles his world.
I always have to remember though to order another side of fries.
Case in point. A few weeks ago my town had one of those "Touch A Truck" events. Great concept. Roll in a ton of firetrucks, buses, police cars, construction vehicles, etc and let kids go hog wild. Climb all over them! Honk the horns! Flash the lights! Plus, do it as many times as you want because the event is free! It's a win win!
In true French Fry Inc form we approach this event with care and planning. Tell him to soon that it's coming, he will drive himself into a frenzy waiting for it. If I don't give him enough time however, meltdown city. This ain't my first rodeo. I'm kind of getting good on the timing. The DATE becomes etched in the stone or in kiddo and we pray like crazy that the thing doesn't rain out. Hell hath no fury like a kiddo off his schedule due to rain. I will just be instructed to turn it off. So there are many conversations on what we will see, what will he go on first, what vehicles he wants me to take pictures of that I know later he will pour over on his ipad with great obsession. Finally the day arrives! The weather couldn't be more perfect. Not to hot. Not to cold. Sunny without a cloud in the sky. He happily drives with us over to where it is AND he is...
Stunned Silent.
He does run around with a purpose. Darting to each thing but I can tell he's doing the check list in his head of what he thinks he HAS to see. I'm praying that all the things are there or it will get ugly fast. He quickly climbs aboard...
A school bus.
Yes, a bus. The very vehicle that he rides on five days a week all year long. A bus he has ridden on since the day after he turned 3. All this choice. A school bus. It's not even the driver's seat he goes for. Nope, purposely walking toward some seat in the middle which was thankfully vacant. I suspect he remembers riding on that one from a class trip. Maybe one that happened years ago. Most of the other kids climbing aboard are much younger than him. I suspect they are the younger siblings who watch their brothers and sisters go off to school with envy. My boy is just there. Quiet. Sitting. To the point where we have to give him a timed countdown of when to get off and go look at something else.
He was a good sport and did so but after every venture to a new vehicle we had to return to the bus. There was a safety to it. A comfort I suppose. I know a few years ago I would of gotten frustrated and said "Let's go home. This is ridiculous. He goes on one every day." Now? I'm just like "Well he's not screaming and we're out of the house so I think he's having fun?" The whole time he's still very quiet. Granted the whole event is really effing noisy so I suspect that this was his own little sensory respite he built for himself. Check out noisy other new thing, then retreat to the bus. Whatever, it was working for him. It didn't cost me a dime. So what if we went on the bus 42 times in the span of an hour?
I did manage on that last trip on it to get him in the drivers seats. He approached it with such reverence and seemed quite in awe sitting at it. Part of me was thinking "Come on kiddo, lay on that horn! I know ya wanna!" That's not his style though. He was to busy taking it all in.
We retired after to some fine dining at a fast food eatery. There, I watched him slowly come down from his quiet high for lack of better words. He started finally talking about what he had just seen. A more relaxed but joyful tone returns to his voice and he is smiling. Yep, he had a good time. Sometimes I just got to trust the way he does things and how he handles his world.
I always have to remember though to order another side of fries.
Wednesday, May 22, 2013
True Confessions
I have some stuff that I often think about at 3AM, when I should be sleeping but Hey, why do that? He's just going to be up in an hour or so anyway. Let me sit and stew. It's strange how at that time of night you are most honest with yourself and your own thoughts. Here are the latest ones bopping around my brain. Or the ones that I can remember before I drifted off only to be woken up again by the Kiddo ten minutes later.
I don't care what causes autism. I don't. I really want folks to stop asking my opinion on this. My kiddo is my kiddo. How I am suppose to accept him for who he is while thinking at the same time "If only I had done this..." Even if you showed me hardcore scientific evidence that this "something" caused it, I don't care. What am I suppose to do? Hop in a DeLorean and go 88 miles an hour to my past and stop the autism from happening? It is what it is so I'm happy to move on. I wish others around me would too.
One and I am done. No, I won't be having anymore kids. The kiddo is turning 9 next week. We finally have a streak of no potty accidents. You think I want to go back to diapers? That's just my flip token answer but in all seriousness, stop asking me this. From the moment you deliver your baby some smart ass has to ask you will you are still in the hospital "So when's the next one?" Be lucky I was medicated jackass. I wanted to slap you. A parent knows when they are done. It's not like I just forgot to have more kids. Whoops! Slipped my mind! I rocked a pretty good case of postpartum depression. Just when I was finally pulling myself out of that, autism popped up. I knew where I had to focus. It's a choice that worked for me. You remembered to have extra kids? Good for you. You must of jotted down a reminder on a Post It. So ya think maybe by the time I hit 50, folks might stop asking?
I love writing the blog but I always struggle with what I will share. I want to respect my kiddo's privacy. He didn't ask me to write about him. Hence the no names and rare pictures. Although I do slip up from time to time. I bet you all go "oh so that's his name!!!" and feel all cool and stuff. Some of you have probably started to figure out who I am on Facebook too. Yep, I'm in some Autism Parents groups. Betcha didn't know did ya? Or you did? I'm there with you. Talking, listening and sharing. I like it too. I feel like a secret agent when I don't tell folks. 007 Licenced to Stim. I'd love to be all "I am Spartacus or Mama Fry." in them but I like walking away from it too. Sometimes I get really uncomfortable with being asked questions about what to do. I'm not an expert. I'm a hot mess in unwashed yoga pants who is desperately counting down the hours till I can take my bra off. Really, you want to trust my opinion? I only know what worked for us.
I really wrestle with that whole "God doesn't give you more than you can handle" cliche. God shouldn't of trusted me with that so much. I couldn't even remember to have more kids. How am I to be trusted with a child with special needs? I have no patience and cuss like a sailor on shore leave. Sarcasm is my answer to everything and yet I'm handed a kid that I am told won't understand it. (I call bullshit on that one. He totally does. Autism Myth Buster right there.) I stick up for other Autism parents when they are being judged and then I am judged for it too. God, us Autism parents are getting the shaft sometimes. Help a girl out and let me win a PowerBall lottery or something. I don't want pity. I want a nap.
I don't have a crystal ball but I have to say some of the stuff my kiddo has managed to do have been awesome surprises. We still have work but he's done more than I ever thought he could. I love it when he proves me wrong. I love it when he proves the jackass early intervention therapists wrong that worked with him and gave me ZIP hope that he'd do anything. I often want to call them up and say "Can't communicate?" and put him on the phone when he's singing then get back on and say "How ya like dem apples?" Perhaps they said that to light a fire under my ass but honestly I don't think that's the case. I think they were just bitches.
So there ya have it. The inner workings of my brain at an ungodly hour. Bet you expected more fries.
I don't care what causes autism. I don't. I really want folks to stop asking my opinion on this. My kiddo is my kiddo. How I am suppose to accept him for who he is while thinking at the same time "If only I had done this..." Even if you showed me hardcore scientific evidence that this "something" caused it, I don't care. What am I suppose to do? Hop in a DeLorean and go 88 miles an hour to my past and stop the autism from happening? It is what it is so I'm happy to move on. I wish others around me would too.
One and I am done. No, I won't be having anymore kids. The kiddo is turning 9 next week. We finally have a streak of no potty accidents. You think I want to go back to diapers? That's just my flip token answer but in all seriousness, stop asking me this. From the moment you deliver your baby some smart ass has to ask you will you are still in the hospital "So when's the next one?" Be lucky I was medicated jackass. I wanted to slap you. A parent knows when they are done. It's not like I just forgot to have more kids. Whoops! Slipped my mind! I rocked a pretty good case of postpartum depression. Just when I was finally pulling myself out of that, autism popped up. I knew where I had to focus. It's a choice that worked for me. You remembered to have extra kids? Good for you. You must of jotted down a reminder on a Post It. So ya think maybe by the time I hit 50, folks might stop asking?
I love writing the blog but I always struggle with what I will share. I want to respect my kiddo's privacy. He didn't ask me to write about him. Hence the no names and rare pictures. Although I do slip up from time to time. I bet you all go "oh so that's his name!!!" and feel all cool and stuff. Some of you have probably started to figure out who I am on Facebook too. Yep, I'm in some Autism Parents groups. Betcha didn't know did ya? Or you did? I'm there with you. Talking, listening and sharing. I like it too. I feel like a secret agent when I don't tell folks. 007 Licenced to Stim. I'd love to be all "I am Spartacus or Mama Fry." in them but I like walking away from it too. Sometimes I get really uncomfortable with being asked questions about what to do. I'm not an expert. I'm a hot mess in unwashed yoga pants who is desperately counting down the hours till I can take my bra off. Really, you want to trust my opinion? I only know what worked for us.
I really wrestle with that whole "God doesn't give you more than you can handle" cliche. God shouldn't of trusted me with that so much. I couldn't even remember to have more kids. How am I to be trusted with a child with special needs? I have no patience and cuss like a sailor on shore leave. Sarcasm is my answer to everything and yet I'm handed a kid that I am told won't understand it. (I call bullshit on that one. He totally does. Autism Myth Buster right there.) I stick up for other Autism parents when they are being judged and then I am judged for it too. God, us Autism parents are getting the shaft sometimes. Help a girl out and let me win a PowerBall lottery or something. I don't want pity. I want a nap.
I don't have a crystal ball but I have to say some of the stuff my kiddo has managed to do have been awesome surprises. We still have work but he's done more than I ever thought he could. I love it when he proves me wrong. I love it when he proves the jackass early intervention therapists wrong that worked with him and gave me ZIP hope that he'd do anything. I often want to call them up and say "Can't communicate?" and put him on the phone when he's singing then get back on and say "How ya like dem apples?" Perhaps they said that to light a fire under my ass but honestly I don't think that's the case. I think they were just bitches.
So there ya have it. The inner workings of my brain at an ungodly hour. Bet you expected more fries.
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