Life with children is....hard. Not in a bad way, nor a poor pitiful me way. It's just hard to balance it; to get it right. They don't come with instructions, there is no one there really to fix what you break, or erase your mistakes. It is just is what it is and having two special needs children, in my most likely jaded opinion, is truly hard.
My youngest son fell asleep tonight, after his meds kicked in, well before his brothers. As he laid there in my arms and I sang our song to him and kissed his soft, sweet, little forehead, I thought of everything I miss with him. All the things I let slide between the cracks, while I coax my oldest into trying something new (i.e. doing what's "normal"). I watched him breathe and thought of all those times I've taken him for granted while I worked on calming my oldest son down. I held his little hand and thought of how many moments I've missed because I was focused on how to adjust my teaching style to adapt to how my oldest son learns. I held him and felt his heartbeat and realized how blessed I was to have him.
Despite his communication faux pas, his frustration when the lines of communications break down or his struggle to make sense of things, he's still such a great boy. He's always happy for the most part. He's the first one to offer a cuddle - granted it's ad nauseam some days, but at least he voluntarily hugs me. Lets me kiss his soft cheeks, and hugs his small little body back. He laughs at butterfly kisses, give me regular mohawks with whatever pretend thing he has on hand and wants to fix everything all the time. Even if it's not broken!
I think life with two children is like this anyway. No matter if you have special needs children or not. Inevitably you feel like you're failing one, neglecting one, getting...distracted. Before you know it, time has somehow just flittered by and the child before you is no longer a baby; a toddler.
I've sat here for hours now wondering how I can keep him involved, engaged. There are just no easy answers. When my oldest son meltsdown, my youngest needs to latch on to me. Only, he can't because I must get my oldest out of the room for everyone's sake. Or if my oldest meltsdown minorly (by our standards of course), but loudly, my youngest covers his ears and either disengages from all of us, or simply leaves and goes off on his own. Usually not wanting to be disturbed.
I hear the statistics too, you know? How this generation of "neurotypical" children will live with their parents until well into their 30s. How special needs children don't even graduate highschool until on average they're 21. So, in reality, I'm sure I will have plenty of time to make it up to him, to both of them. It's just tonight, laying with him snuggled next to me, out like a light, brushing his soft hair to the side, I felt bad.
I'm sure, since they are so young right now, I will work it out in time. Tonight, listening to him hum in his sleep though, I wished I'd had this figured out now. All I could do, was bend down and whisper in his little ear, that I loved him always and no matter what. I kissed his small, warm cheek and carried his limp, sleeping body to bed and tucked him in. Hoping that somewhere in there, that just this once language doesn't get jumbled up and that my heartfelt words made it to where they needed to go. I hope he heard me, I hope he knows and always remembers.
Saturday, October 26, 2013
Thursday, October 24, 2013
A Look Behind the Autism Curtain...
Like it or not, diagnosis isn't the end of the world per say. It's the beginning of another.
Each day bringing new surprises, the good and the bad. Bringing new discoveries, new practices, new experiences...each day is just that new.
Today, my day was bad....really B.A.D.!
I'm sharing what a real day is like with two Autism/Sensory kiddos (and then some) because most people don't have a clue what we really go through. I've carried my oldest son out of one too many stores to ignore the glares, the shocked looks of horror and the condescending sneers, not to know this.
So, today this was my day....
I took my oldest to his PT (physical therapy) appointment. My youngest and I went to an indoor playplace at our usual spot. He refused to play though, because it was too quiet....have I mentioned he hates noise and covers his ears quite frequently and screams?!
Pick up my oldest son and head out to get lunch before the next appointment. Mind you, I didn't schedule the appointments this way, they rescheduled and my oldest son, truly needs these appointments. So, the boys don't want to go to the usual place, they want to go someplace "new". New in my head is codeword for MELTDOWN! I shudder in fear and try to talk them out of it. They insist - I should say, my oldest insists that they're fine and can handle it. My youngest only understands "new playplace", he's all for it.
We get there and oh my goodness, the noise was unbearable to me!!! My boys were so excited that they didn't care though. My oldest son disengaged several million times from play and from his brother, never once did he engage another kiddo. And when someone pushed him from behind, the interrogator came out. Every kid that went down the slide after, was drilled about whether they pushed him and where they were when he was pushed. I was a tad on red alert at this point, but the other half of me thought: Aha, socialization!
Not even ten minutes later, bring on the reign of bullies. The same three boys, over and over and over again, began to take over his spot. Literally shoving him out of the way. Now he knows that though these guys tower over him, they are his age (he's very small for his age though). So, at first he tries to reason with them. One of them calls him a baby or something to that effect and then they ignore him. Needless to say, my hackles went up and they were separated. This happened several other times and I decided it was time to go, very much to my oldest's dismay. He attempted to regulate himself before we left by sitting on this spinning thing in the toddler section and spin repeatedly.
Now mind you, my youngest while verbal, doesn't do receptive language. Meaning you can talk to him, he may agree, even say yes or no, but chances are, he doesn't have a clue what you're saying. So, while it's clear when he's with other kids that he doesn't "fit in", they always sort of accept him and welcome him in. They never do this for my oldest and it's hard on him, because sometimes he notices and other times, he wants to play with his brother and notices that brother isn't around.
Anyway, long story short, we get to their OT (occupational therapy) session. My oldest begs them to go first because he's "had a bad day". They go check, but have scheduled testing for my youngest, who always does OT first anyway, so he has to wait. This sets my oldest off, just for a few. I wouldn't be mom, if I couldn't reign in mini meltdowns. :) This should've been my warning right there, but I didn't listen.
Two hours later, when it's time for him to go, he's wasted too much time and lost his free time at the end of the session. Which is not to his learned schedule. So, of course, he meltsdown. At one point, he sees something out of place and NEEDS to replace it. We tell him that they can do it, because he's already yelling loudly. This panics him and he's yelling and screaming much louder, and backed himself into another room. By this point, I'm trying to retrieve him because the OTs, all three of them, have another kid there waiting and my son is scaring the grandmother to no end, the boy is starting to look upset and he's scaring my youngest as well. I get him out of the corner and then he becomes hysterical. As I'm trying to reach down and get him off the ground and out of the building, my youngest son, who is now freaking out because his big brother is so loud, has clutched not only my leg in a death grip, but he has my arm as well. So, I can't get a hold of my oldest son.
I finally get a hold of him, and let me tell you, with an autistic child, that is not easy feat in and of itself! As I'm making my way out of the door with this kicking, screaming child, my sweet little 5 year old knows the drill enough that he picks up big brother's lovies on the way out of the office. As I struggle to keep hold of my son, his little brother gently and lovingly places his big bother's lovies next to his car seat, climbs in and sits in his carseat like an angel!
In the meantime I'm no longer able to keep hold of my son and have him sort of pinned to the parking lot outside the opened door to his seat. This sounds bad, but he's trying to bolt back inside and fix the object still and he's screaming bloody murder. I somehow manage to get him in the backseat and this is how ingenious they can be in a meltdown when compelled to finish a compulsion, he wedges himself completely under the passenger seat, from the back! Now, I can't pull him out with the back seat, jammed in his back and I am unable to reach under to get him to bend his legs.
Little brother though, knows the drill. He sees his brother look at the open car door on his side and he immediately jumps up to shut it. I could've kissed him, had I been able to let go of my oldest. Now the only open door is behind me. So, I hold onto my son as best I can, rocking him, sweating, crying, assuring him that he will be ok, that I understand what he feels he needs to do, but that he'll be ok. After almost 20 minutes, I'm able to stand up and let go of him. He's still yelling, crying and huffing a little, but he's no longer ready to bolt. Which is good because my back and knees are broke and my arms feel like they weigh fifty pounds.
After several more minutes of me calmly talking to him, he agrees to get back up in his seat. And just like that, it's over for now. All this over the need to stay on schedule and to put something away where it belongs!
To anyone outside it looked like a spoiled child, or that he might've been reacting to me holding onto him, but this is our life. This is what we do. We deal with this every single day. And this is only one thing, one page, one instance. There are those of us who have it much worse, those of us, like myself that have two autistic kids in the house. There are those like my sons that have not only Autism, but multiple other comorbid conditions. Our life isn't always pretty, it's not always bad either, but what we really need more than anything - good or bad days, is a little less judgement from the average joe.
The next time you see that mom struggling in the store with a screaming kid, do me and the rest of us a favor, don't judge, don't glare, just don't! Take a moment to notice that we might be struggling, that our child may not be loosing it over a toy, that we may have two with special needs. Take a moment to tell us that we're doing ok, that you aren't there to weigh us down with more baggage we don't need.
Be humane to us, be compassionate, be kind. We will ALWAYS return the favor, whether to you, another stranger or another comrade in arms. We never take the things for granted that the rest of the world does. Please remember us, the next time you want to sneer at a screaming child and do what is RIGHT!
Each day bringing new surprises, the good and the bad. Bringing new discoveries, new practices, new experiences...each day is just that new.
Today, my day was bad....really B.A.D.!
I'm sharing what a real day is like with two Autism/Sensory kiddos (and then some) because most people don't have a clue what we really go through. I've carried my oldest son out of one too many stores to ignore the glares, the shocked looks of horror and the condescending sneers, not to know this.
So, today this was my day....
I took my oldest to his PT (physical therapy) appointment. My youngest and I went to an indoor playplace at our usual spot. He refused to play though, because it was too quiet....have I mentioned he hates noise and covers his ears quite frequently and screams?!
Pick up my oldest son and head out to get lunch before the next appointment. Mind you, I didn't schedule the appointments this way, they rescheduled and my oldest son, truly needs these appointments. So, the boys don't want to go to the usual place, they want to go someplace "new". New in my head is codeword for MELTDOWN! I shudder in fear and try to talk them out of it. They insist - I should say, my oldest insists that they're fine and can handle it. My youngest only understands "new playplace", he's all for it.
We get there and oh my goodness, the noise was unbearable to me!!! My boys were so excited that they didn't care though. My oldest son disengaged several million times from play and from his brother, never once did he engage another kiddo. And when someone pushed him from behind, the interrogator came out. Every kid that went down the slide after, was drilled about whether they pushed him and where they were when he was pushed. I was a tad on red alert at this point, but the other half of me thought: Aha, socialization!
Not even ten minutes later, bring on the reign of bullies. The same three boys, over and over and over again, began to take over his spot. Literally shoving him out of the way. Now he knows that though these guys tower over him, they are his age (he's very small for his age though). So, at first he tries to reason with them. One of them calls him a baby or something to that effect and then they ignore him. Needless to say, my hackles went up and they were separated. This happened several other times and I decided it was time to go, very much to my oldest's dismay. He attempted to regulate himself before we left by sitting on this spinning thing in the toddler section and spin repeatedly.
Now mind you, my youngest while verbal, doesn't do receptive language. Meaning you can talk to him, he may agree, even say yes or no, but chances are, he doesn't have a clue what you're saying. So, while it's clear when he's with other kids that he doesn't "fit in", they always sort of accept him and welcome him in. They never do this for my oldest and it's hard on him, because sometimes he notices and other times, he wants to play with his brother and notices that brother isn't around.
Anyway, long story short, we get to their OT (occupational therapy) session. My oldest begs them to go first because he's "had a bad day". They go check, but have scheduled testing for my youngest, who always does OT first anyway, so he has to wait. This sets my oldest off, just for a few. I wouldn't be mom, if I couldn't reign in mini meltdowns. :) This should've been my warning right there, but I didn't listen.
Two hours later, when it's time for him to go, he's wasted too much time and lost his free time at the end of the session. Which is not to his learned schedule. So, of course, he meltsdown. At one point, he sees something out of place and NEEDS to replace it. We tell him that they can do it, because he's already yelling loudly. This panics him and he's yelling and screaming much louder, and backed himself into another room. By this point, I'm trying to retrieve him because the OTs, all three of them, have another kid there waiting and my son is scaring the grandmother to no end, the boy is starting to look upset and he's scaring my youngest as well. I get him out of the corner and then he becomes hysterical. As I'm trying to reach down and get him off the ground and out of the building, my youngest son, who is now freaking out because his big brother is so loud, has clutched not only my leg in a death grip, but he has my arm as well. So, I can't get a hold of my oldest son.
I finally get a hold of him, and let me tell you, with an autistic child, that is not easy feat in and of itself! As I'm making my way out of the door with this kicking, screaming child, my sweet little 5 year old knows the drill enough that he picks up big brother's lovies on the way out of the office. As I struggle to keep hold of my son, his little brother gently and lovingly places his big bother's lovies next to his car seat, climbs in and sits in his carseat like an angel!
In the meantime I'm no longer able to keep hold of my son and have him sort of pinned to the parking lot outside the opened door to his seat. This sounds bad, but he's trying to bolt back inside and fix the object still and he's screaming bloody murder. I somehow manage to get him in the backseat and this is how ingenious they can be in a meltdown when compelled to finish a compulsion, he wedges himself completely under the passenger seat, from the back! Now, I can't pull him out with the back seat, jammed in his back and I am unable to reach under to get him to bend his legs.
Little brother though, knows the drill. He sees his brother look at the open car door on his side and he immediately jumps up to shut it. I could've kissed him, had I been able to let go of my oldest. Now the only open door is behind me. So, I hold onto my son as best I can, rocking him, sweating, crying, assuring him that he will be ok, that I understand what he feels he needs to do, but that he'll be ok. After almost 20 minutes, I'm able to stand up and let go of him. He's still yelling, crying and huffing a little, but he's no longer ready to bolt. Which is good because my back and knees are broke and my arms feel like they weigh fifty pounds.
After several more minutes of me calmly talking to him, he agrees to get back up in his seat. And just like that, it's over for now. All this over the need to stay on schedule and to put something away where it belongs!
To anyone outside it looked like a spoiled child, or that he might've been reacting to me holding onto him, but this is our life. This is what we do. We deal with this every single day. And this is only one thing, one page, one instance. There are those of us who have it much worse, those of us, like myself that have two autistic kids in the house. There are those like my sons that have not only Autism, but multiple other comorbid conditions. Our life isn't always pretty, it's not always bad either, but what we really need more than anything - good or bad days, is a little less judgement from the average joe.
The next time you see that mom struggling in the store with a screaming kid, do me and the rest of us a favor, don't judge, don't glare, just don't! Take a moment to notice that we might be struggling, that our child may not be loosing it over a toy, that we may have two with special needs. Take a moment to tell us that we're doing ok, that you aren't there to weigh us down with more baggage we don't need.
Be humane to us, be compassionate, be kind. We will ALWAYS return the favor, whether to you, another stranger or another comrade in arms. We never take the things for granted that the rest of the world does. Please remember us, the next time you want to sneer at a screaming child and do what is RIGHT!
Tuesday, October 22, 2013
Thank You Wonder Pets!
Both my boys go to speech at least once a week. My youngest son, he struggles with something called receptive language. Which means that he can talk to you, but he's not quite always able to understand exactly what you're trying to tell him. Often times, when he really wants to convey things to you, he will simply state what would normally be the subject of the sentence and not what he wants you to know about the subject. It's frustrating for everyone involved. His other issue is that everything was "yesterday". It's never 'this morning' or 'a couple of days ago', it's always "yesterday".
So, his SLP gave me what sounds like a simple chore...give him directions in sequential order. Example, first you put the toothpaste on your toothbrush, then you brush your teeth and last you spit. Sounds easy enough when you're given an example, but I'm so not good on the fly. I'm the ridiculous girl in the horror movie that panics and drops her keys, or trips on a log that's clearly visible. Under pressure I loose all momentum, all thoughts and any sense of any kind.
I spent the whole day with him yesterday and couldn't think of a reasonable thing to say to him other than the brushing the teeth thing! How ridiculous am I really? Today between running to my oldest son's orthodontist appointment and then to his orthotist appointment for his feet/ankle braces. I just didn't really have time to think of anything new.
Sitting on the couch at the end of the night, my youngest son asks to watch his newly found, favorite show, Wonder Pets. So, as he sits there fidgeting his bony bum and elbows into my side and I'm trying to figure out where the little minion hid his pants, it dawned on me. No, not where the pants were - I actually had to go get a new pair, my little guy thinks clothes are optional every day! It dawned on me though that his beloved show, whose theme song I used to sing every time my phone rang, was the answer to my prayers! We watched a dinosaur episode tonight and I literally got to say: First they pulled, then they pushed and last they....fill in the blank.... When I asked him to repeat, after about the third repetition, he understand what I was asking him to do and actually complied!
I was so excited and ready to jump up and do the happy dance that mortifies anyone around me, when he dug his elbow into my side to get more comfy. Seriously, how do these kids get so bony?! They're suppose to be all soft, cuddly and not poky.
I digress. My point is that today, I am thankful for silly, overlooked, daily things. Without that show, I'm quite sure I would be into Monday, when his next SLP appointment is and have nothing to report. As the show quite blatantly boasts:
Linny, Tuck and Ming Ming too. We're Wonder Pets and we'll help you!
Thank you Wonder Pets, thank you!
So, his SLP gave me what sounds like a simple chore...give him directions in sequential order. Example, first you put the toothpaste on your toothbrush, then you brush your teeth and last you spit. Sounds easy enough when you're given an example, but I'm so not good on the fly. I'm the ridiculous girl in the horror movie that panics and drops her keys, or trips on a log that's clearly visible. Under pressure I loose all momentum, all thoughts and any sense of any kind.
I spent the whole day with him yesterday and couldn't think of a reasonable thing to say to him other than the brushing the teeth thing! How ridiculous am I really? Today between running to my oldest son's orthodontist appointment and then to his orthotist appointment for his feet/ankle braces. I just didn't really have time to think of anything new.
Sitting on the couch at the end of the night, my youngest son asks to watch his newly found, favorite show, Wonder Pets. So, as he sits there fidgeting his bony bum and elbows into my side and I'm trying to figure out where the little minion hid his pants, it dawned on me. No, not where the pants were - I actually had to go get a new pair, my little guy thinks clothes are optional every day! It dawned on me though that his beloved show, whose theme song I used to sing every time my phone rang, was the answer to my prayers! We watched a dinosaur episode tonight and I literally got to say: First they pulled, then they pushed and last they....fill in the blank.... When I asked him to repeat, after about the third repetition, he understand what I was asking him to do and actually complied!
I was so excited and ready to jump up and do the happy dance that mortifies anyone around me, when he dug his elbow into my side to get more comfy. Seriously, how do these kids get so bony?! They're suppose to be all soft, cuddly and not poky.
I digress. My point is that today, I am thankful for silly, overlooked, daily things. Without that show, I'm quite sure I would be into Monday, when his next SLP appointment is and have nothing to report. As the show quite blatantly boasts:
Linny, Tuck and Ming Ming too. We're Wonder Pets and we'll help you!
Thank you Wonder Pets, thank you!
Saturday, October 12, 2013
Good Days and Bad
There are moments in life when everything is so far out of whack that you can't find your way out of a paper bag. Then there are those times when things seem to be falling down around you and yet you can clearly see the silver lining, despite it all.
For example, one day your son complete refuses to participate in his occupational therapy session and they call you back from your quick time at an indoor playground with your other son because of it. While there he completely melts down, full on screaming at not one, not two, but three of his occupational therapists! Then melts down in the car on the way home and then does it again once inside the door, all of a whopping three feet. This was just a section of one of those "paper bag" days that I had this week. Did I mention that when he melts down, he often beats the tar out of himself? How he is not black and blue half the time, is beyond me. These are the days I want to go back to bed and pull the covers over my head.
Then there are days when you enter the library and your youngest, screams bloody murder only 30 seconds after stepping through the threshold.
For lunch, you brave the outside world and take them again to their favorite indoor playground. During your visit, you youngest child proceeds to obsess over numbers, writes them over and over and over again, all while making fire engine (siren) sounds and repeating the numbers aloud. During this time, your oldest son has now locked focus on a 1 year old little girl, who has shown attention to his Blue's Clues dolls that go EVERYWHERE with him. While he's just honestly trying to actually engage her in play, he's ticcing like a maniac. I will admit the mother looked way less comfortable than I would've hoped. Funny enough how the mere mention of Asperger's (ASD) and Tourette Syndrome, can seem to empty a place in no time flat!
By the end of the day, I'm mentally exhausted from trying to keep them engaged in whatever activity, assuring them that they would have computer time when we got home, etc. That when OT/PT is over, I just really want to go home, but since we're down a car, we have to pick up their dad from work. So, we go back to aforementioned playground usually. Well, that day my oldest son decided to spill something on his pants. Which for a NT (neuro-typical) child is no big whoop. My son though, we're in the car - in front of his OT/PT/SLP's office and he's stripped NAKED in 30 seconds!!! When I ask him why, he says because his underwear is wet. Being the good sensory mommy that I am, I always have extra clothes on hand for just this kind of thing. I retrieve the extra clothes and much to my dismay there are no underwear in the bag!
So, after a lot of "discussing", I agree to let him go commando....commando! Of all the things I thought I would tell my child to do, this was not one of them!
Still despite this kind of day, despite the mental exhaustion, the stress and the even the physical exhaustion, the day was alright. I found humor in every situation, even while the drama was going on. It was a fine day really.
I do not know why some days are worse than others. I do not know what in me decides that one day the naked meltdown is ok, and on another day that the simple act of screaming can set me so ill at ease. Still, I am along for the ride, I can't complain too much, it could always be worse.
The thing I despise the most though, is the ignorant remarks on how to discipline my child(ren). I sincerely despise that no matter how often I explain what Autism is, or Tourette Syndrome entails, or what Dyspraxia means to motor skills, that still people offer advice they have no business giving. I think it is the on thing I most dislike about being a special needs family. It saddens me; frustrates me that no one truly has any idea what a day entails, the good, the bad and the humorous. The simple joys we experience over small milestones, miracles and sadness we feel when those around us don't understand, when our children are separated from those "neuro-typical" children around them.
For example, one day your son complete refuses to participate in his occupational therapy session and they call you back from your quick time at an indoor playground with your other son because of it. While there he completely melts down, full on screaming at not one, not two, but three of his occupational therapists! Then melts down in the car on the way home and then does it again once inside the door, all of a whopping three feet. This was just a section of one of those "paper bag" days that I had this week. Did I mention that when he melts down, he often beats the tar out of himself? How he is not black and blue half the time, is beyond me. These are the days I want to go back to bed and pull the covers over my head.
Then there are days when you enter the library and your youngest, screams bloody murder only 30 seconds after stepping through the threshold.
For lunch, you brave the outside world and take them again to their favorite indoor playground. During your visit, you youngest child proceeds to obsess over numbers, writes them over and over and over again, all while making fire engine (siren) sounds and repeating the numbers aloud. During this time, your oldest son has now locked focus on a 1 year old little girl, who has shown attention to his Blue's Clues dolls that go EVERYWHERE with him. While he's just honestly trying to actually engage her in play, he's ticcing like a maniac. I will admit the mother looked way less comfortable than I would've hoped. Funny enough how the mere mention of Asperger's (ASD) and Tourette Syndrome, can seem to empty a place in no time flat!
By the end of the day, I'm mentally exhausted from trying to keep them engaged in whatever activity, assuring them that they would have computer time when we got home, etc. That when OT/PT is over, I just really want to go home, but since we're down a car, we have to pick up their dad from work. So, we go back to aforementioned playground usually. Well, that day my oldest son decided to spill something on his pants. Which for a NT (neuro-typical) child is no big whoop. My son though, we're in the car - in front of his OT/PT/SLP's office and he's stripped NAKED in 30 seconds!!! When I ask him why, he says because his underwear is wet. Being the good sensory mommy that I am, I always have extra clothes on hand for just this kind of thing. I retrieve the extra clothes and much to my dismay there are no underwear in the bag!
So, after a lot of "discussing", I agree to let him go commando....commando! Of all the things I thought I would tell my child to do, this was not one of them!
Still despite this kind of day, despite the mental exhaustion, the stress and the even the physical exhaustion, the day was alright. I found humor in every situation, even while the drama was going on. It was a fine day really.
I do not know why some days are worse than others. I do not know what in me decides that one day the naked meltdown is ok, and on another day that the simple act of screaming can set me so ill at ease. Still, I am along for the ride, I can't complain too much, it could always be worse.
The thing I despise the most though, is the ignorant remarks on how to discipline my child(ren). I sincerely despise that no matter how often I explain what Autism is, or Tourette Syndrome entails, or what Dyspraxia means to motor skills, that still people offer advice they have no business giving. I think it is the on thing I most dislike about being a special needs family. It saddens me; frustrates me that no one truly has any idea what a day entails, the good, the bad and the humorous. The simple joys we experience over small milestones, miracles and sadness we feel when those around us don't understand, when our children are separated from those "neuro-typical" children around them.
Thursday, October 3, 2013
Feeling Blessed
Looking back, when my youngest was diagnosed with ASD. I remember being so shocked, I could barely speak. I nodded my head in response to what the doctor was saying, took the handouts and ushered my two wild boys out to the van. Gave them there gadgets to play with and then broke down in tears.
I'm not sure why I cried really. I mean by this point, we'd been told he had ADHD, Apraxia of speech and then there were the myriad of diagnosis that DW had. After a while, you sort of cease going through the denial, grief, acceptance and research phase, you just go on. With the ASD diagnosis though, I was stopped dead in my tracks. I think I cried most of the day.
Looking back, I think hearing "autism", made all my fears for him real. I had and do worry about how he'll be in the future. His receptive language and attention span are not near where "normal" kids' are. I had just voiced to my mother that I wasn't sure he'd ever be able to function alone, as he got older. I think this is why I cried...I think.
Last week, I marched into the Developmental Behavioral Pediatrician's office with both boys yet again in tow, and walked out with what would've amounted to an Asperger's diagnosis (before they changed the DSM) for my oldest son. I didn't shed a tear though. I knew it was coming, I've known it since he was 2 so it came as no shock, when the week prior we were handed the litany of paperwork for family to fill out.
I sit here now, watching by of my ASD boys, so completely different, thankfully both verbal though. Granted JD's verbal skills are a serious stumbling block for him sometimes, but he's verbal. He can say "I love you", he cuddles (sometimes WAY too much), he laughs, smiles and can sometimes seem to show affection even for his brother! DW his verbal acuity is beyond amazing, always has been since he was 1 year old. He is less affectionate though, tells jokes only he really gets, prefers to be on his own most of the time, is very self sufficient, and relentless when he "knows" something can be done.
Both are sensitive to sound, both hate getting wet and both have their rituals that they need just right. Food though, they are again like night and day. DW will only eat soft, HOT foods and eats only 11 different kinds of foods now. JD, he will not eat anything remotely warm, prefers crunchy things and will eat just about anything you put in front of him, except watermelon.
I've been conversing with other autism moms this week, really diving into the community as it were and I keep hearing how so many of them could not do it with two of them...there are days the stress is enough to drive one mad, I won't deny that. Everytime I hear a mom say this though, I think this is nothing. If they were non-verbal and so far down into the autism scale, it might be something else. I am lucky really to have two of them though. To see life through their eyes, to be able to enjoy most things with them and them with me.
I sit here though and watch the two of them, JD playing with his trains and DW with his fastidiousness with the playdough and I wonder why I reacted differently. Why JD's diagnosis was such a shock and a part of me feels bad that I did not mourn for DW in the same way. Maybe it's because I've mourned so many times for him with all of his diagnosis I'm just finally ok? Or because maybe I knew it was there. I'm not sure, but as I go to my first ever lecture tonight on an autism related topic and plan with my oldest his first recreation club this weekend and his last soccer game with TOPSoccer the following weekend, I feel blessed that there is such a great community out there. I feel blessed that my boys are the way that they are. And I wish I'd known more about the autism community prior to now. I hope that everyone out there has a community like this, whether it's for Autism, Dyspraxia, OCD, SPD, etc.
I'm not sure why I cried really. I mean by this point, we'd been told he had ADHD, Apraxia of speech and then there were the myriad of diagnosis that DW had. After a while, you sort of cease going through the denial, grief, acceptance and research phase, you just go on. With the ASD diagnosis though, I was stopped dead in my tracks. I think I cried most of the day.
Looking back, I think hearing "autism", made all my fears for him real. I had and do worry about how he'll be in the future. His receptive language and attention span are not near where "normal" kids' are. I had just voiced to my mother that I wasn't sure he'd ever be able to function alone, as he got older. I think this is why I cried...I think.
Last week, I marched into the Developmental Behavioral Pediatrician's office with both boys yet again in tow, and walked out with what would've amounted to an Asperger's diagnosis (before they changed the DSM) for my oldest son. I didn't shed a tear though. I knew it was coming, I've known it since he was 2 so it came as no shock, when the week prior we were handed the litany of paperwork for family to fill out.
I sit here now, watching by of my ASD boys, so completely different, thankfully both verbal though. Granted JD's verbal skills are a serious stumbling block for him sometimes, but he's verbal. He can say "I love you", he cuddles (sometimes WAY too much), he laughs, smiles and can sometimes seem to show affection even for his brother! DW his verbal acuity is beyond amazing, always has been since he was 1 year old. He is less affectionate though, tells jokes only he really gets, prefers to be on his own most of the time, is very self sufficient, and relentless when he "knows" something can be done.
Both are sensitive to sound, both hate getting wet and both have their rituals that they need just right. Food though, they are again like night and day. DW will only eat soft, HOT foods and eats only 11 different kinds of foods now. JD, he will not eat anything remotely warm, prefers crunchy things and will eat just about anything you put in front of him, except watermelon.
I've been conversing with other autism moms this week, really diving into the community as it were and I keep hearing how so many of them could not do it with two of them...there are days the stress is enough to drive one mad, I won't deny that. Everytime I hear a mom say this though, I think this is nothing. If they were non-verbal and so far down into the autism scale, it might be something else. I am lucky really to have two of them though. To see life through their eyes, to be able to enjoy most things with them and them with me.
I sit here though and watch the two of them, JD playing with his trains and DW with his fastidiousness with the playdough and I wonder why I reacted differently. Why JD's diagnosis was such a shock and a part of me feels bad that I did not mourn for DW in the same way. Maybe it's because I've mourned so many times for him with all of his diagnosis I'm just finally ok? Or because maybe I knew it was there. I'm not sure, but as I go to my first ever lecture tonight on an autism related topic and plan with my oldest his first recreation club this weekend and his last soccer game with TOPSoccer the following weekend, I feel blessed that there is such a great community out there. I feel blessed that my boys are the way that they are. And I wish I'd known more about the autism community prior to now. I hope that everyone out there has a community like this, whether it's for Autism, Dyspraxia, OCD, SPD, etc.
Subscribe to:
Posts (Atom)