I am currently working on a post about his birthday but something happened today that made me put that on hold & write this.
Today was Martin Luther King Day...and thus, the schools were closed. Now, Hunter loves his routine. It's something all autistic kids have in common to some degree. They may be all over the place with other traits & similarities, but all autistic kids love their routine. Well...ok, I don't know all autistic kids in the entire universe, but from what I've read, it's the one similarity you can bank on. So I was kind of dreading today, because he gets confused when he has days off from school. Last night was his birthday party, and he said as I was tucking him in, "School tomorrow?" "No, baby, no school tomorrow." So that must mean it's Friday because Friday night means no school the next day. "Gymnastics tomorrow?" "No, tomorrow is just a day off." He seemed to sort of understand but not really, and he soon fell asleep. This morning, I woke to the sounds of one of his new toys, a SWAT helicopter with realistic sounds (oh, such a fun alarm!), and I smiled sleepily because new toys means mama gets to sleep in a bit later.
He was happy all day, playing in his new bouncy castle (a joint gift from Rob's parents & mine), patiently sitting in his little Toy Story chair while the castle inflated, happily bouncing away, coming inside to do puzzles now and then or play on his Ipad. Lunch & nap arrived and he happily went to play in his room. I was desperate for a nap, as I've been super stressed out the past month and for some reason today it just kind of hit me and I was just exhausted. I had a most disgustingly unhealthy lunch of leftover Little Caesar's pizza & cupcakes (Damn you Target for your delicious mini cupcakes...and damn you people for RSVPing & not showing up...I have so many extra cupcakes!). Hunter refused to sleep, but played happily for a couple of hours. He always has quiet time, even if he doesn't nap & even when he doesn't sleep, it's a rare day that he doesn't enjoy having his quiet time for at least two hours or more, Then he was done & demanded to be let out of his room.
And then it went downhill. He wanted "pa-sert". This is dessert in Hunter speak. I told him that no, he gets dessert after his dinner. He cried, wanting a chocolate Santa or a chocolate crunchy (the first is those foil wrapped Christmas chocolates you can find at Walmart, the second is Whoppers), and when I continued to say no, he had a couple of mini tantrums, which he was sent to time out for. Hunter doesn't get sent to time out often, because, for the most part, he listens well and is remarkably well behaved for a child of his age. Really, he is. I'm not someone who likes bratty children and refuse to raise my son to be a spoiled little brat who can get away with whatever he wants to. Autism or not. Now, that being said, we are a bit more lenient in some areas than parents with non-special needs kids may be, but he's a good kid & he behaves well.
He asked for dinner earlier than his normal 6, so at 5pm, I gave him some cheese pizza. I was prepared when he asked for dessert, as that's his routine. One small chocolate bell later and he was happy. Thirty minutes later and he was beyond pissed. It was time for his bath and he wanted to do puzzles. He didn't want me playing on his Ipad. He was tired and needed to go to sleep. The tantrum devolved quickly into a meltdown. Now, a tantrum is very different from a meltdown. Here is a VERY basic breakdown of tantrum vs meltdown: A tantrum is what a child (and sometimes an adult) does when they don't get their way, and they look at you for a reaction. A child having a meltdown does not look at you for a reaction. They could care less if you're even in the room, if they hurt themselves, etc.
The only way to calm Hunter down from a meltdown is for me to hold him as tight as I can until his body and his mind can reset and calm down. If I let him go, he goes into a rage and just destroys whatever is in his path. Think Tasmanian Devil. Seriously. He cannot help himself and just destroys. Then he gets incredibly agitated and is in tears because he's made a mess. It's heartbreaking. And no, it's NOT a case of him needing more discipline. So I held him. Now, I'm not the strongest person in the world, and to hold a nearly 40 lb child, who is out of control, flailing his limbs...is HARD. It is physically, and emotionally exhausting. He hits, he kicks, he screams. Sometimes he bangs his head into my face. He can't control himself. It's so heartbreaking. And this is how strong he is: I was holding him and he was bucking his body so hard, it was moving ME across the floor. I had to scoot to the carpeted hallway just so I could brace my feet against the bathroom door as an anchor. We stripped him down and put him in the bath, thinking that might help calm him down. It didn't. He threw every bath toy out of the bath, splashing water everywhere, becoming enraged even further. I took him out when he started scooping handfuls of water out of the tub and flinging them across the room. The floor had puddles of water in the places where we didn't have towels down, and the rugs and towels were sopping wet.
Almost immediately, he calmed down, and was his happy normal self just minutes later. It's like a light bulb had been switched off. This is not his worst meltdown, by far. He's had them last 45 minutes or longer. And he's now in bed, passed out, and we're about to watch a movie and have dinner. I just hope he has a better day tomorrow.
Monday, January 21, 2013
Wednesday, January 16, 2013
Four is Fast Approaching
This blog is going to be kind of back & forth from present day happenings to past, because there is a LOT of material to cover, memories to relive, etc. I have lots of information to dole out, but the glaring reality is that my baby is going to be four on Friday. That's...two days. FOUR. FREAKIN'. YEARS. OLD. Yes. I capped all that. Why? Because it's kind of freaking me out, and it makes me sad. I mean, yeah, I LOVE that he's growing into this amazing little man, but where did my tiny boy go?
I miss the days when I could put him in his little bouncy chair & stick it someplace & he would stay put. Rob & I got robbed of our baby. Hunter was doing everything physically, earlier than we'd anticipated. We had about four months of "baby" and then he morphed from tiny baby into this tiny man. We used to call him our little Burgess Meredith (the actor who played the coach in Rocky). I have pics of him in a red onesie, blue pants and blue hat where he looks frighteningly like Mr. Meredith. He rolled over earlier than the books told us he would, he walked before he was one (a week before Christmas, to be exact). Not walking across the room, mind you, but taking enough steps to be considered officially "on two legs".
This is my first year without him home on his birthday. He started school last year, but not until a few days after he turned three. I know that when Friday arrives, and I've wiped the sleep from my eyes and am snuggled under a blanket on the couch, sitting here in the relative quiet of the house...I'll start crying. I cry over everything anyway, so why would his birthday be any different?
I have so many things lined up for him, and it's more for me, but I don't really care. With the SSI money (ie: Social Security Supplemental Income) that will be a series of posts by themselves, because that whole process has been a huge learning experience/headache/relief), I am able to buy him things we just couldn't afford before. Money is tight, as I know it is for SO many other people out there, and any "new" clothes Hunter would get before, would come from friends who would send hand me downs, or from his grandparents/aunts/etc. And we were so incredibly grateful for those clothes (and continue to be, as friends send us clothes their boys have grown out of). But it is such an amazing feeling to be able to go to Walmart or Target & not have to pass up a really adorable shirt because it's $20. Now, we've not been destitute, but you know...$20 was the same as a package of diapers, and if you're on a super strict budget, and you have to spend $40 in diapers (day time & night time; Pull Ups & night time) every week, it adds up, and after awhile, you know, a new shirt for $20 seems silly when you have to buy milk, eggs, diapers, etc.
Now, you may be thinking, "It's "only" $20" but along with autism and SPD, comes some unique challenges in the money department. So yeah, it may be "only" $20, but we had to prioritize and "new" clothes often fell short, esp when we could get them second hand. That's not to say I've gone out and gotten him a whole new wardrobe, but a couple of shirts here and there, some new pants...it's just nice to be able to buy him something if I want to. And let me tell you...for a potty training boy, there is nothing better than sweatpants for $3 at Walmart. Yes, I said sweatpants. They're warm and a lot easier for him to maneuver while at school than jeans. Garanimals, people. The. BEST.
Where was I going with this? Oh yes...his birthday. So, for his birthday, I found this really adorable robot shirt on Gymboree's website, for $15! It says "I am 4". *Swoon* I'm making cookies for his classmates, and his bus driver/attendant on his special needs bus (ie: The Short Bus). When he comes home, he'll take his nap as usual, as we don't skip naps unless absolutely necessary (dr's visits, parent/teacher conferences, etc), and I'm just praying he sleeps, because a tired Hunter is not a pleasant Hunter. I'm making him homemade chicken nuggets & fries for his dinner (that's his absolute favorite meal), and Rob is getting a small cake/cupcake for after dinner. I have a few small gifts for him to open, because he's at the age where he KNOWS birthday = presents. Or, as he says "Pwesents!!!!!"
If you didn't know this already, you can go to Disney Junior online & set up a birthday greeting for your kid. Mickey, Minnie or Jake (Neverland Pirates) will call your child & wish them a happy birthday. You can also get a personalized video greeting for them. And both are FREE!!!! My very favorite word. :) He loves Mickey & Minnie, but Jake is his boy. So that's it for his big day.
Saturday, he'll have gymnastics as usual, and then it's off to go shopping for last minute stuff for his party. We're having it at The Little Gym (where he has gymnastics) & the staff know him & love him, and he loves his teachers. It's castle/knight themed & I'm making a castle cake which I'm a bit freaked out about. I've never done a shaped cake before (using a castle shaped bundt pan), and I've never done more than smearing some frosting on a round or a flat cake before. We'll see how it goes. :) Wish me luck.
At some point, he has a bouncy castle coming from both sets of grandparents. I found a highly rated one for $260, but with a bit of research, I found it for $220, and found an online coupon for 20% off plus free shipping, and after taxes, the grandparents paid $206.
It's SO cold right now (20-30 degrees) & that's just too cold to be outside for a long period of time. Hunter LOVES bouncy houses, and he'd bounce for hours on end if we would let him. Hunter has a need to bounce, because of his SPD, and the bouncy house is going to be amazing for him. Just not in super cold weather. We don't want him getting sick. :) So that's it...that's my weekend. I have to dig out my kleenex for Friday.
I miss the days when I could put him in his little bouncy chair & stick it someplace & he would stay put. Rob & I got robbed of our baby. Hunter was doing everything physically, earlier than we'd anticipated. We had about four months of "baby" and then he morphed from tiny baby into this tiny man. We used to call him our little Burgess Meredith (the actor who played the coach in Rocky). I have pics of him in a red onesie, blue pants and blue hat where he looks frighteningly like Mr. Meredith. He rolled over earlier than the books told us he would, he walked before he was one (a week before Christmas, to be exact). Not walking across the room, mind you, but taking enough steps to be considered officially "on two legs".
This is my first year without him home on his birthday. He started school last year, but not until a few days after he turned three. I know that when Friday arrives, and I've wiped the sleep from my eyes and am snuggled under a blanket on the couch, sitting here in the relative quiet of the house...I'll start crying. I cry over everything anyway, so why would his birthday be any different?
I have so many things lined up for him, and it's more for me, but I don't really care. With the SSI money (ie: Social Security Supplemental Income) that will be a series of posts by themselves, because that whole process has been a huge learning experience/headache/relief), I am able to buy him things we just couldn't afford before. Money is tight, as I know it is for SO many other people out there, and any "new" clothes Hunter would get before, would come from friends who would send hand me downs, or from his grandparents/aunts/etc. And we were so incredibly grateful for those clothes (and continue to be, as friends send us clothes their boys have grown out of). But it is such an amazing feeling to be able to go to Walmart or Target & not have to pass up a really adorable shirt because it's $20. Now, we've not been destitute, but you know...$20 was the same as a package of diapers, and if you're on a super strict budget, and you have to spend $40 in diapers (day time & night time; Pull Ups & night time) every week, it adds up, and after awhile, you know, a new shirt for $20 seems silly when you have to buy milk, eggs, diapers, etc.
Now, you may be thinking, "It's "only" $20" but along with autism and SPD, comes some unique challenges in the money department. So yeah, it may be "only" $20, but we had to prioritize and "new" clothes often fell short, esp when we could get them second hand. That's not to say I've gone out and gotten him a whole new wardrobe, but a couple of shirts here and there, some new pants...it's just nice to be able to buy him something if I want to. And let me tell you...for a potty training boy, there is nothing better than sweatpants for $3 at Walmart. Yes, I said sweatpants. They're warm and a lot easier for him to maneuver while at school than jeans. Garanimals, people. The. BEST.
Where was I going with this? Oh yes...his birthday. So, for his birthday, I found this really adorable robot shirt on Gymboree's website, for $15! It says "I am 4". *Swoon* I'm making cookies for his classmates, and his bus driver/attendant on his special needs bus (ie: The Short Bus). When he comes home, he'll take his nap as usual, as we don't skip naps unless absolutely necessary (dr's visits, parent/teacher conferences, etc), and I'm just praying he sleeps, because a tired Hunter is not a pleasant Hunter. I'm making him homemade chicken nuggets & fries for his dinner (that's his absolute favorite meal), and Rob is getting a small cake/cupcake for after dinner. I have a few small gifts for him to open, because he's at the age where he KNOWS birthday = presents. Or, as he says "Pwesents!!!!!"
If you didn't know this already, you can go to Disney Junior online & set up a birthday greeting for your kid. Mickey, Minnie or Jake (Neverland Pirates) will call your child & wish them a happy birthday. You can also get a personalized video greeting for them. And both are FREE!!!! My very favorite word. :) He loves Mickey & Minnie, but Jake is his boy. So that's it for his big day.
Saturday, he'll have gymnastics as usual, and then it's off to go shopping for last minute stuff for his party. We're having it at The Little Gym (where he has gymnastics) & the staff know him & love him, and he loves his teachers. It's castle/knight themed & I'm making a castle cake which I'm a bit freaked out about. I've never done a shaped cake before (using a castle shaped bundt pan), and I've never done more than smearing some frosting on a round or a flat cake before. We'll see how it goes. :) Wish me luck.
At some point, he has a bouncy castle coming from both sets of grandparents. I found a highly rated one for $260, but with a bit of research, I found it for $220, and found an online coupon for 20% off plus free shipping, and after taxes, the grandparents paid $206.
It's SO cold right now (20-30 degrees) & that's just too cold to be outside for a long period of time. Hunter LOVES bouncy houses, and he'd bounce for hours on end if we would let him. Hunter has a need to bounce, because of his SPD, and the bouncy house is going to be amazing for him. Just not in super cold weather. We don't want him getting sick. :) So that's it...that's my weekend. I have to dig out my kleenex for Friday.
Friday, January 11, 2013
Greetings!
Hello & Welcome! I feel a bit like the Emcee from Cabaret.
"Willkommen, bienvenue, welcome! Fremde, etranger, stranger. Gluklich zu sehen, je suis enchante, Happy to see you, bleibe, reste, stay."
Ok, I just totally geeked out on you. Sorry about that. Yes, I'm a musical theatre geek. Or, I used to be...when I was single & had money. :) So anyway, if I haven't scared you off yet, back to this blog business. By the way, don't feel bad if you can't pronounce any of those foreign words above. I certainly can't. Had to google the lyrics just to be able to spell them. :)
I am a stay at home mom to an amazing little boy named Hunter. He'll be 4 on January 18th (next Friday, eek!) & the thought of a blog has been rattling around in my brain for a couple of years now. My mom has mentioned, more than once (or three, or four, or five times) that I should start a blog.
Hunter was first diagnosed with Sensory Processing Disorder when he was around 20 months old, although not officially, because the therapists who evaluated him said that an official diagnosis is not covered by most insurance companies because it's a sensory issue. Trying to get services for him would be nearly impossible because of this, and we trusted them, so we just went with their advice. After all, they're the experts, right?Most people had (have) no idea what SPD is, so we found ourselves explaining a lot and doing a lot of reading.
It made things a little less scary & explained a lot, such as why he was rubbing his head along the carpet, or crashing into things, banging his head against the wall, etc...but in our research, my husband & I were like, these books and websites are describing autism also, and that sounds just like Hunter. All autistic kids have sensory issues but not all SPD kids have autism. So we asked the "expert" therapists & were told "It is impossible for Hunter to be autistic, because he is too social". That, my friends, is an actual quote. And we trusted them b/c they knew best. Or so we thought.
I'll go into this all more in detail later, but long story short, they were wrong, and our guts were right. Hunter was diagnosed on June 12th, 2012. It took her about five minutes of observing him before she was nodding her head and saying yup, that's a kid on the spectrum. He actually has "PDD-NOS" which stands for "Pervasive Developmental Disorder Not Otherwise Specified" but come on...who wants to say THAT?!? And besides, we would say that & then end up having to explain the whole thing anyway. It IS one of the 5 spectrum disorders. I googled it on Wikipedia, and here is the definition (copied & pasted, all rights to Wikipedia...and anything that might be mis-spelled, is their mistake. I didn't mess w/ their posting):
Pervasive developmental disorder not otherwise specified (PDD-NOS) is one of the five autism spectrum disorders (ASD)[1] and also one of the five disorders classified as a pervasive developmental disorder(PDD).[2] According to the DSM-IV, PDD-NOS is a diagnosis that is used for "severe and pervasive impairment in the development of reciprocal social interaction or verbal and nonverbal communication skills, or when stereotyped behavior, interests, and activities are present, but the criteria are not met for a specific PDD" or for several other disorders.[3] PDD-NOS is often called atypical autism,[4] because the criteria for autistic disorder are not met, for instance because of late age of onset, atypical symptomatology, or subthreshold symptomatology, or all of these.[3] Even though PDD-NOS is considered milder than typicalautism, this is not always true. While some characteristics may be milder, others may be more severe.[5]"
Still with me? Wasn't that FUN? Do you understand now why it's easier to say Autism? Autism, people "get". PDD-NOS, takes a lot of explanation & my brain is a tired one. Hunter is on the "less severe" (with most things) side of it, but it's still a daily struggle and some (many) things are harder ( & more frustrating) for him than for other kids not on the spectrum.
So...this brings me to the blog & the decision to do it. When Hunter started eating solids, I made his food from scratch. When he had special issues we had to address, I did countless hours of research. I have done more research in the past few years than I did for any paper I had to write in college.
And sometimes it's been frustrating, sometimes fun, mostly rewarding. There's been a lot of trial & error, and my mother has told me that I need to share this information b/c it might help someone else.
Mostly, this will be about Hunter, what we deal with on a daily basis, recipes I've made that have worked (and not worked, but might work for someone else), products that have made our lives easier (or not), etc. But I happen to have an AMAZING husband who loves & adores his best little buddy more than life itself, so you'll prob get tired of reading about him, too. :)
So I hope something we've learned can help you, or maybe make you smile...and thanks for embarking on this journey with me.
Tamara
"Willkommen, bienvenue, welcome! Fremde, etranger, stranger. Gluklich zu sehen, je suis enchante, Happy to see you, bleibe, reste, stay."
Ok, I just totally geeked out on you. Sorry about that. Yes, I'm a musical theatre geek. Or, I used to be...when I was single & had money. :) So anyway, if I haven't scared you off yet, back to this blog business. By the way, don't feel bad if you can't pronounce any of those foreign words above. I certainly can't. Had to google the lyrics just to be able to spell them. :)
I suppose I should start this off by telling you who I am & why yet another blog has been created in this vast Internet world of blogs.
I am a stay at home mom to an amazing little boy named Hunter. He'll be 4 on January 18th (next Friday, eek!) & the thought of a blog has been rattling around in my brain for a couple of years now. My mom has mentioned, more than once (or three, or four, or five times) that I should start a blog.
Hunter was first diagnosed with Sensory Processing Disorder when he was around 20 months old, although not officially, because the therapists who evaluated him said that an official diagnosis is not covered by most insurance companies because it's a sensory issue. Trying to get services for him would be nearly impossible because of this, and we trusted them, so we just went with their advice. After all, they're the experts, right?Most people had (have) no idea what SPD is, so we found ourselves explaining a lot and doing a lot of reading.
It made things a little less scary & explained a lot, such as why he was rubbing his head along the carpet, or crashing into things, banging his head against the wall, etc...but in our research, my husband & I were like, these books and websites are describing autism also, and that sounds just like Hunter. All autistic kids have sensory issues but not all SPD kids have autism. So we asked the "expert" therapists & were told "It is impossible for Hunter to be autistic, because he is too social". That, my friends, is an actual quote. And we trusted them b/c they knew best. Or so we thought.
I'll go into this all more in detail later, but long story short, they were wrong, and our guts were right. Hunter was diagnosed on June 12th, 2012. It took her about five minutes of observing him before she was nodding her head and saying yup, that's a kid on the spectrum. He actually has "PDD-NOS" which stands for "Pervasive Developmental Disorder Not Otherwise Specified" but come on...who wants to say THAT?!? And besides, we would say that & then end up having to explain the whole thing anyway. It IS one of the 5 spectrum disorders. I googled it on Wikipedia, and here is the definition (copied & pasted, all rights to Wikipedia...and anything that might be mis-spelled, is their mistake. I didn't mess w/ their posting):
Pervasive developmental disorder not otherwise specified (PDD-NOS) is one of the five autism spectrum disorders (ASD)[1] and also one of the five disorders classified as a pervasive developmental disorder(PDD).[2] According to the DSM-IV, PDD-NOS is a diagnosis that is used for "severe and pervasive impairment in the development of reciprocal social interaction or verbal and nonverbal communication skills, or when stereotyped behavior, interests, and activities are present, but the criteria are not met for a specific PDD" or for several other disorders.[3] PDD-NOS is often called atypical autism,[4] because the criteria for autistic disorder are not met, for instance because of late age of onset, atypical symptomatology, or subthreshold symptomatology, or all of these.[3] Even though PDD-NOS is considered milder than typicalautism, this is not always true. While some characteristics may be milder, others may be more severe.[5]"
Still with me? Wasn't that FUN? Do you understand now why it's easier to say Autism? Autism, people "get". PDD-NOS, takes a lot of explanation & my brain is a tired one. Hunter is on the "less severe" (with most things) side of it, but it's still a daily struggle and some (many) things are harder ( & more frustrating) for him than for other kids not on the spectrum.
So...this brings me to the blog & the decision to do it. When Hunter started eating solids, I made his food from scratch. When he had special issues we had to address, I did countless hours of research. I have done more research in the past few years than I did for any paper I had to write in college.
And sometimes it's been frustrating, sometimes fun, mostly rewarding. There's been a lot of trial & error, and my mother has told me that I need to share this information b/c it might help someone else.
Mostly, this will be about Hunter, what we deal with on a daily basis, recipes I've made that have worked (and not worked, but might work for someone else), products that have made our lives easier (or not), etc. But I happen to have an AMAZING husband who loves & adores his best little buddy more than life itself, so you'll prob get tired of reading about him, too. :)
So I hope something we've learned can help you, or maybe make you smile...and thanks for embarking on this journey with me.
Tamara
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