Ok, maybe they haven't attacked, but it feels like. It's been quite a few years since DW's tics have been debilitating. It's been quite a few years since anyone's flat out noticed his tics period! He's always ticcing, but with such short bursts and while he's moving, no one seemed to notice. Not even when they were obvious to me.
These last few months though, as his medications that have worked great for all sorts of his behaviors have begun to work less and less. Which has prompted some needed, but dreaded medication changes. It's also brought back the upswing of tics that I've not seen in some years.
Which is neither here nor there for me, but he's at that age now where he wants to be like everyone else, he's in the public more, etc. Which if you're a tic'er can be a hard thing. I don't have TS, but if in the room with someone I don't know who tics a lot and I'm uncomfortable, I find myself ticcing in response, if that makes any sort of sense. The point is that those who don't tic, notice those that do.
So, imagine my dismay over my mother-in-law commenting about how much he was pulling at his collar. Then commenting about how he was going to stretch it out. Then how it was going to wreck his shirt...and on and on.
Follow that by his half-brother, who is here for Christmas vacation, sitting at the table with DW turning to his father and asking his father! Why is he rocking the chair? Why is he touching everything with both hands? Why is he moving his arms like that? Why is he pulling on his shirt? Is that snort still a tic? I mean he's talking about his brother as if he's not even in the room with him! I corrected that and told him he just needs to ask DW and then drop it. DW has no problem saying "it's a tic" or "I have Tourette Syndrome".
As a mom, I fully expect to educate the public on a great many things with my boys, I just don't expect to have to continually refresh the family's memory. It's a tad frustrating. Especially when they can see that certain tics are so frustrating for him and he's bothered enough by them to start a sentence over and over and over until he can get through it without that tic. Or when he's crying because he's grunted so much he's made himself hoarse and can't actually grunt!
Here's the thing I've taken to saying, if they're not bothering him too much, than they shouldn't bother you. It's not your body, your brain or you throat doing it. So, just assume anything that he's repeatedly doing is a tic and it's a part of him and move on! A bit brash,I know, but some days brash is needed!
I hope everyone has a tic-tacular New Year!
Monday, December 30, 2013
Elopement and NOT the Marrying Kind!
I write in here sporadically now. I do try to keep more time to do this, but at the end of the day...I don't know, I'm exhausted!
It's hard to stay awake when your youngest child (who I swear is bent on world domination) is awake every morning lately at no latter than 4 a.m.!
I don't know if anyone reads this blog or not anymore since I quit writing so frequently, but I decided to share this here in the hopes that it may spare anyone else the scare that I went through last week.
Sensory kiddos and Autism kiddos have a tendency to bolt. While one will run from an offending sensory stimuli, the autism kid my take off for some random reason known only to them and ALSO to avoid the overstimulation that some offending sensory thing has caused them. I experienced the SPD running with DW when he was little. In fact, one time he tried to throw himself off of the moving train at the zoo because of a noise the joints were making!
I'd never really experienced the autism running off, or as it known in Autism circles, elopement, before until last week. I didn't see all that happened with my son, but what was relayed to me dropped me to my knees and took my breath clean out of me.
After his med check at his doctor's office, we were leaving the room and JD squeezed between big brother and I in the hallway and then made a mad dash for the waiting room. I turned for a brief second to acknowledge what his doc had said to me and when I turned back he was out of the hallway. Now, I should mention that JD has gotten ahead of a few times and he simply plays hide and seek in the waiting room. This was not that day though. His brother and I got out into the waiting room and he was nowhere to be found!
I should also mention that his doctor's office is in a hospital. Not a large one really, but it is long (laid out in a ranch style kind of way). It is also, what amounts to maybe a small block away from a major street. I say it's a highway, but it's official designation is "street". It is used my students going to a large highschool down the street, people going to and from work, etc. It is a pretty busy street.
Anyway, his brother and I take off into the hospital, separating with me going one way and DW going another. At my end, the door we came in, I step outside, call his name and look for him. After a minute or so, I don't see him and don't want DW to panic if he can't find me, so I head back in. Neither of us can find him. We meet back in the middle and let the staff know that we're looking for him. We both head toward the area where we came in, hoping he's just hiding really well there.
A young lady sees my panicked face and tells us that she saw a young child in a black shirt run out of the front doors!! I run out after him, again calling his name and beating myself up for not staying outside the first time. I see an older lady who thankfully has a death grip on him waving at me from the other end of the parking lot! He comes running to me, she's yelling at me, but what she said, I have no idea. The head of the staff comes out to make sure he's found me alright. I'm in tears and he's chipper as anything.
As I go to get him in the car, tears already running down my face. Another mom comes up to me to tell me what happened. Apparently several people where out there trying to get him to come to them. He was so busy looking for something, he wouldn't stop or acknowledge them in any fashion. At one point, the lady who'd gotten a hold of him, was driving a transportation van and almost hit him!!! As if I wasn't crying enough at that point...all I could now picture was my tiny little son and this HUGE van face to face. This mother said, that all the parents in the parking lot were angry with JD's mom up until that point. When the van almost hit him, he laughed and kept running. It was then that they knew he "wasn't right". To make matters worse, all he could tell them was what his name was and not even his last name. Which I KNOW he knows, but welcome to the world of Autism.
It scared me to my core and made me angry at myself. I knew he was a runner, but I'd become so complacent. No more, there are better locks on my doors, I've bought a zipper pull that identifies him as autistic and I've order a tag for his shoes as well, that will hold contact info in case he gets away from me again.
On a side note and a look into his world: When I asked him what he ran outside for, he didn't answer right away. I just kept casually asking him throughout the day. He finally answered: 111. I was perplexed for a while until I realized that he is OBSESSED with numbers and he was looking for our license plate! So, as with all autism mommas, I planned for future elopement moments and I adorned out car with various things that make it stand out for him. Things he loves, things he recognizes and I do so from all angles. So, that no matter what angle he comes at the car, he'll notice it and hopefully stay put next to it.
PLEASE take this message to heart. Pass it on, let everyone know that this happens to ASD kiddos. That we can all do something to help. There are new things coming out all the time, from those smarthpone scanning bracelets, to new GPS ways to track down a child.
We don't have project lifesaver in our county. The next county over does though. Still, if you can afford it there are other GPS things you can do for your child. Even if you can't afford a GPS set up, there are so many things that you can to help keep your kiddos safe. Visit the following sites to get more information:
http://www.autismsafety.org/
http://www.awaare.org/ (The Big Red Safety Box)
http://www.projectlifesaver.org/
http://www.autismriskmanagement.com/
And most importantly, if you see a child out on their own, even if they won't let you come near please do something. So many could be returned home safely if the public would step in and help.
It's hard to stay awake when your youngest child (who I swear is bent on world domination) is awake every morning lately at no latter than 4 a.m.!
I don't know if anyone reads this blog or not anymore since I quit writing so frequently, but I decided to share this here in the hopes that it may spare anyone else the scare that I went through last week.
Sensory kiddos and Autism kiddos have a tendency to bolt. While one will run from an offending sensory stimuli, the autism kid my take off for some random reason known only to them and ALSO to avoid the overstimulation that some offending sensory thing has caused them. I experienced the SPD running with DW when he was little. In fact, one time he tried to throw himself off of the moving train at the zoo because of a noise the joints were making!
I'd never really experienced the autism running off, or as it known in Autism circles, elopement, before until last week. I didn't see all that happened with my son, but what was relayed to me dropped me to my knees and took my breath clean out of me.
After his med check at his doctor's office, we were leaving the room and JD squeezed between big brother and I in the hallway and then made a mad dash for the waiting room. I turned for a brief second to acknowledge what his doc had said to me and when I turned back he was out of the hallway. Now, I should mention that JD has gotten ahead of a few times and he simply plays hide and seek in the waiting room. This was not that day though. His brother and I got out into the waiting room and he was nowhere to be found!
I should also mention that his doctor's office is in a hospital. Not a large one really, but it is long (laid out in a ranch style kind of way). It is also, what amounts to maybe a small block away from a major street. I say it's a highway, but it's official designation is "street". It is used my students going to a large highschool down the street, people going to and from work, etc. It is a pretty busy street.
Anyway, his brother and I take off into the hospital, separating with me going one way and DW going another. At my end, the door we came in, I step outside, call his name and look for him. After a minute or so, I don't see him and don't want DW to panic if he can't find me, so I head back in. Neither of us can find him. We meet back in the middle and let the staff know that we're looking for him. We both head toward the area where we came in, hoping he's just hiding really well there.
A young lady sees my panicked face and tells us that she saw a young child in a black shirt run out of the front doors!! I run out after him, again calling his name and beating myself up for not staying outside the first time. I see an older lady who thankfully has a death grip on him waving at me from the other end of the parking lot! He comes running to me, she's yelling at me, but what she said, I have no idea. The head of the staff comes out to make sure he's found me alright. I'm in tears and he's chipper as anything.
As I go to get him in the car, tears already running down my face. Another mom comes up to me to tell me what happened. Apparently several people where out there trying to get him to come to them. He was so busy looking for something, he wouldn't stop or acknowledge them in any fashion. At one point, the lady who'd gotten a hold of him, was driving a transportation van and almost hit him!!! As if I wasn't crying enough at that point...all I could now picture was my tiny little son and this HUGE van face to face. This mother said, that all the parents in the parking lot were angry with JD's mom up until that point. When the van almost hit him, he laughed and kept running. It was then that they knew he "wasn't right". To make matters worse, all he could tell them was what his name was and not even his last name. Which I KNOW he knows, but welcome to the world of Autism.
It scared me to my core and made me angry at myself. I knew he was a runner, but I'd become so complacent. No more, there are better locks on my doors, I've bought a zipper pull that identifies him as autistic and I've order a tag for his shoes as well, that will hold contact info in case he gets away from me again.
On a side note and a look into his world: When I asked him what he ran outside for, he didn't answer right away. I just kept casually asking him throughout the day. He finally answered: 111. I was perplexed for a while until I realized that he is OBSESSED with numbers and he was looking for our license plate! So, as with all autism mommas, I planned for future elopement moments and I adorned out car with various things that make it stand out for him. Things he loves, things he recognizes and I do so from all angles. So, that no matter what angle he comes at the car, he'll notice it and hopefully stay put next to it.
PLEASE take this message to heart. Pass it on, let everyone know that this happens to ASD kiddos. That we can all do something to help. There are new things coming out all the time, from those smarthpone scanning bracelets, to new GPS ways to track down a child.
We don't have project lifesaver in our county. The next county over does though. Still, if you can afford it there are other GPS things you can do for your child. Even if you can't afford a GPS set up, there are so many things that you can to help keep your kiddos safe. Visit the following sites to get more information:
http://www.autismsafety.org/
http://www.awaare.org/ (The Big Red Safety Box)
http://www.projectlifesaver.org/
http://www.autismriskmanagement.com/
And most importantly, if you see a child out on their own, even if they won't let you come near please do something. So many could be returned home safely if the public would step in and help.
Thursday, November 7, 2013
David VS. Goliath
Here's the most frustrating thing about having verbal kids with Autism or Asperger's or high functioning autism (HFA), they LOOK normal.
Most of the time I can deal with the looks, the rude, ignorant comments,even the occasional unwanted attention from a public meltdown.
What I experienced today was above and beyond the normal thing and as an autism mom, it was most disconcerting.
I took my son to an indoor playplace (at a fast food restaurant). He'd had a bad experience previous to today there, with bullies. My goal is to get to him to understand that one bad experience doesn't make the entire place, activity or food a bad thing from now into eternity. Which for an Asperger's kid is a GREAT thing to learn. So, with high hopes after OT and PT, we headed off to this place.
All was well half an hour into the experience and I was pleased. He was going to learn that one bad apple doesn't make the bushel all bad.
Then in walks this little girl, who seems nice enough, but upon arrival everything goes south. A grandparent left, because of the constant screaming, coming from the girl. I'm a fair natured person, so I don't think too much of it. While watching my boys, I note that her father is on his cell phone, and has not glanced at her a single time. During my observations I watch her torment all the children up in this apparatus, blocking the entrance to the slide, not letting them place with this gear/spinning thing, etc. Another 15 minutes go by and I'm about to give warning that it's time to leave. Before I can do so, I hear my oldest son raising his voice, clearly upset.
He's doing everything we've worked so hard on - patience and waiting his turn, manners, not hitting, etc. This girl though is NOT doing anything remotely nice. In fact another little girl had had enough at one point and walked over, slapped the other girl and told her to knock it off! So, I ask my oldest son to come sit down with us and I'll go get his shoes. As I look up to warn my youngest, I see this girl once again physically grab my youngest son and attempt to chuck him backwards!
I am done by this point. My youngest while a verbal ASD kiddo, lacks the ability to advocate for himself. He struggles with receptive language and has no clue how other kids behave. Even if he's seen manners 6 million times, he will still not be able to recall those appropriate actions every time. So, he's just taking what she's doing to him, but I am done. As I holler out "HEY!", my little momma hollers out "HEY GET YOUR HANDS OFF OF HIM!". She immediately lets go and everyone continues to play as they did before. DW, who is sitting across from me, asks for a drink refill. I leave to get it and when I come back in, this girl's father (Who is easily over 6 ft. tall) now out of his seat and standing maybe 2 feet from my 67 year old, 4'11" tall mother yelling at her!
I am completely confused what's happened, everything was fine when I left. Apparently, so busy on his phone, he'd not noticed a dang thing, even though several comments had been made in passive aggressive manner about her, loud enough for him to hear by several people. He's now screaming at my little momma, telling her not to yell at his daughter - which I can understand. So, could she, and she repeatedly tried apologizing and telling him that she was just defending her autistic grandchild. He would get quiet, sit down and then be back up and ranting at her - at the top of his lungs! Each time, she kept apologizing to him and he just would not quit scarring the stuffing out of everyone around us. He kept sitting down and then getting back up and walking toward her!
Long story short, I stepped up to him to get him to stop and my little momma had to go out and get a manager - or two. While both managers just stood there while he began ranting again. I look over and my oldest son looks like he's about to loose it, two women have removed their children from the area. So, I felt like I had to stand up to him again and tell him that she's already apologized numerous times and said she went about it wrongly and he needed to let it go.
At this point, he finally sits down and begins consoling his now crying daughter....It was the craziest thing I've ever, ever seen in my life.
My point of this post is that two things have now happened tonight. This man has now reinforced DW's assertion that this place is bad and he will now probably never go back to the place without a fight. The second thing he's reinforced for me, is that because my children are verbal, have no wheelchairs, crutches, etc. they are always going to have to deal with people like this. If they don't physically see something "wrong" with your child, they don't care and will not be objective.
The thought of how to prepare them is mind boggling at this point. First of all, this guy was obviously off his rocker in general. It's just that I know that battles like these are far from over, that there will be crazies, jerks and people who will try to take advantage...I can barely handle them. How will my boys do, after I'm long gone? How do I teach them to handle bullies? Will they always recognize them?
For now, I will settle for a quiet night at home, where before bed I heard giggles, got lots of deep pressure hugs and kissed foreheads of sleeping, gentle boys and deal with the rest tomorrow.
Most of the time I can deal with the looks, the rude, ignorant comments,even the occasional unwanted attention from a public meltdown.
What I experienced today was above and beyond the normal thing and as an autism mom, it was most disconcerting.
I took my son to an indoor playplace (at a fast food restaurant). He'd had a bad experience previous to today there, with bullies. My goal is to get to him to understand that one bad experience doesn't make the entire place, activity or food a bad thing from now into eternity. Which for an Asperger's kid is a GREAT thing to learn. So, with high hopes after OT and PT, we headed off to this place.
All was well half an hour into the experience and I was pleased. He was going to learn that one bad apple doesn't make the bushel all bad.
Then in walks this little girl, who seems nice enough, but upon arrival everything goes south. A grandparent left, because of the constant screaming, coming from the girl. I'm a fair natured person, so I don't think too much of it. While watching my boys, I note that her father is on his cell phone, and has not glanced at her a single time. During my observations I watch her torment all the children up in this apparatus, blocking the entrance to the slide, not letting them place with this gear/spinning thing, etc. Another 15 minutes go by and I'm about to give warning that it's time to leave. Before I can do so, I hear my oldest son raising his voice, clearly upset.
He's doing everything we've worked so hard on - patience and waiting his turn, manners, not hitting, etc. This girl though is NOT doing anything remotely nice. In fact another little girl had had enough at one point and walked over, slapped the other girl and told her to knock it off! So, I ask my oldest son to come sit down with us and I'll go get his shoes. As I look up to warn my youngest, I see this girl once again physically grab my youngest son and attempt to chuck him backwards!
I am done by this point. My youngest while a verbal ASD kiddo, lacks the ability to advocate for himself. He struggles with receptive language and has no clue how other kids behave. Even if he's seen manners 6 million times, he will still not be able to recall those appropriate actions every time. So, he's just taking what she's doing to him, but I am done. As I holler out "HEY!", my little momma hollers out "HEY GET YOUR HANDS OFF OF HIM!". She immediately lets go and everyone continues to play as they did before. DW, who is sitting across from me, asks for a drink refill. I leave to get it and when I come back in, this girl's father (Who is easily over 6 ft. tall) now out of his seat and standing maybe 2 feet from my 67 year old, 4'11" tall mother yelling at her!
I am completely confused what's happened, everything was fine when I left. Apparently, so busy on his phone, he'd not noticed a dang thing, even though several comments had been made in passive aggressive manner about her, loud enough for him to hear by several people. He's now screaming at my little momma, telling her not to yell at his daughter - which I can understand. So, could she, and she repeatedly tried apologizing and telling him that she was just defending her autistic grandchild. He would get quiet, sit down and then be back up and ranting at her - at the top of his lungs! Each time, she kept apologizing to him and he just would not quit scarring the stuffing out of everyone around us. He kept sitting down and then getting back up and walking toward her!
Long story short, I stepped up to him to get him to stop and my little momma had to go out and get a manager - or two. While both managers just stood there while he began ranting again. I look over and my oldest son looks like he's about to loose it, two women have removed their children from the area. So, I felt like I had to stand up to him again and tell him that she's already apologized numerous times and said she went about it wrongly and he needed to let it go.
At this point, he finally sits down and begins consoling his now crying daughter....It was the craziest thing I've ever, ever seen in my life.
My point of this post is that two things have now happened tonight. This man has now reinforced DW's assertion that this place is bad and he will now probably never go back to the place without a fight. The second thing he's reinforced for me, is that because my children are verbal, have no wheelchairs, crutches, etc. they are always going to have to deal with people like this. If they don't physically see something "wrong" with your child, they don't care and will not be objective.
The thought of how to prepare them is mind boggling at this point. First of all, this guy was obviously off his rocker in general. It's just that I know that battles like these are far from over, that there will be crazies, jerks and people who will try to take advantage...I can barely handle them. How will my boys do, after I'm long gone? How do I teach them to handle bullies? Will they always recognize them?
For now, I will settle for a quiet night at home, where before bed I heard giggles, got lots of deep pressure hugs and kissed foreheads of sleeping, gentle boys and deal with the rest tomorrow.
Saturday, October 26, 2013
Distracted
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.
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.
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.
Monday, September 30, 2013
Autism...Hear Me Roar!
It's been a heck of a month. It really has. As September quietly, beautifully slips away today and October sneaks up, I can't believe that another year has gone by. I can't believe that I've lived through this last month. I can't believe all the changes that have happened in just 4 short weeks.
My youngest, who is on the spectrum, is finally in speech therapy again, after being on a wait list for 6 months. I was told, it will be intensive and require a lot of "drilling" at home. Sounds fun, doesn't it? My oldest, who has Tourette Syndrome, Intermittent Explosive Behavior Disorder, ADHD, ODD, OCD, etc. is now being tested for ASD as well tomorrow.
My youngest who despite his diagnosis, was always pretty easy to handle, has become increasingly agitated where his communication gap is concerned. My oldest, has melted down repeatedly every day to epic proportions. And while I know the word "epic" is used so passively now, I assure you this is the only world that does what happened with him justice. In one day, I carried him out of 3 different grocery stores as onlookers stared, gave disapproving looks, and pulled their children away from - even though they were easily several hundred feet away. I suppose to some degree it was my fault, after the 1st meltdown I should've packed it in, but I had to get that stuff done that day.
My youngest, was put on medication to help his attention, which is suppose to help him with his communication in the long run. And while I tried for two years to NOT put him on meds, after going to the bathroom for seriously only 60 seconds, I came out to find him dang near on top of my fridge. Mind you, my fridge stands alone in my kitchen, no counters are anyway near it. So, I agreed to give him a small dose of medication. It's not a lot and he's still all over the place, but at least now I can go to the bathroom without worrying he's going to set the house on fire or get himself killed!
My oldest, I fought for 3 years to keep off of a certain medication. After 6 months of violent meltdowns, and most of them in public, I finally gave in and tried him on it. He's been on it all of 2 weeks now and while he now has minor meltdowns 2 - 3 times a week, they're manageable. Granted I had to chase him down at my mother's apartment when he bolted out the door because I was going to wash his dirty face, but that was mild. Though, I'm sure her neighbors loved watching me get my son in the grass, wrap my legs around his, bear hug him with one hand and wash his face with the other! I suppose though, at a retirement village, that would be exciting entertainment!
I started taking a chance as well. I began to not only take part and end up heading my state's Dyspraxia Foundation chapter, I decided to start taking part in the local Autism Society. I was worried, because my oldest son is verbal, he's ahead for his age actually. My youngest son has great expressive language, for the most part and he struggles with the receptive language, but he's verbal as well. So, I thought that because neither boy was so far down on the spectrum, that we'd not be welcomed or fit in anywhere.
My youngest, was put on medication to help his attention, which is suppose to help him with his communication in the long run. And while I tried for two years to NOT put him on meds, after going to the bathroom for seriously only 60 seconds, I came out to find him dang near on top of my fridge. Mind you, my fridge stands alone in my kitchen, no counters are anyway near it. So, I agreed to give him a small dose of medication. It's not a lot and he's still all over the place, but at least now I can go to the bathroom without worrying he's going to set the house on fire or get himself killed!
My oldest, I fought for 3 years to keep off of a certain medication. After 6 months of violent meltdowns, and most of them in public, I finally gave in and tried him on it. He's been on it all of 2 weeks now and while he now has minor meltdowns 2 - 3 times a week, they're manageable. Granted I had to chase him down at my mother's apartment when he bolted out the door because I was going to wash his dirty face, but that was mild. Though, I'm sure her neighbors loved watching me get my son in the grass, wrap my legs around his, bear hug him with one hand and wash his face with the other! I suppose though, at a retirement village, that would be exciting entertainment!
I started taking a chance as well. I began to not only take part and end up heading my state's Dyspraxia Foundation chapter, I decided to start taking part in the local Autism Society. I was worried, because my oldest son is verbal, he's ahead for his age actually. My youngest son has great expressive language, for the most part and he struggles with the receptive language, but he's verbal as well. So, I thought that because neither boy was so far down on the spectrum, that we'd not be welcomed or fit in anywhere.
So, I dipped a baby toe in. I began participating in their online support group for moms. Then I signed my oldest son up for soccer. A special needs soccer team, filled with every kind of special needs, not just Autism. Which has opened so many doors for the boys and for me.
I've always been the kind of mom who gives herself to everything she does and most especially her children. Which those of you out there who actually read this know, that is not the smartest thing to do really. It's like the flight attendant who tells the parents to put the mask over their own face before their child's. I never agreed with that before, but now I can see why and most importantly, I agree!
As I've learned more and volunteered more, put ourselves out there more and connected with other mothers close to us, I've realized how much we all have in common and it's amazingly freeing. I was speaking to one of the heads of the local Autism Society and I was suddenly saddened to hear her describe the reason many mothers or families didn't participate in many of the activities. It's the same reason I never participated prior to now...I felt that because my kids weren't verbal we'd not fit in, so to speak. She tells me that the moms of kids who are non-verbal feel the same, that because there are so many of us with verbal kids they feel like that don't fit either. It breaks my heart to hear this. I wish so many more of us would get out there, share our stories and whether or not we're from verbal or non-verbal families, realize that in the grand scheme of things, we're all one big family! We all need to stand up together and educate, push for better legislation, better insurance coverage, better IEPs. We need to stand up and ROAR! Not be sitting on our own side of the respective fences and be afraid to put ourselves out there. We all know the behaviors, we all know that no child is the same and it's truly sad that we're not willing to come forward more and be apart of something special. If you know someone who is afraid to come to a local autism event because either they're child(ren), are verbal or because they're non verbal, please encourage them to just get up and out and participate! I can't tell you how essential our mental health is as the caregivers to our kiddos. Please take a minute and support yourself, or if you are the caregiver reading this, please stop and do something for yourself today. Most importantly, connect with other people in your local community, you need that support. Lets all roar together!
As I've learned more and volunteered more, put ourselves out there more and connected with other mothers close to us, I've realized how much we all have in common and it's amazingly freeing. I was speaking to one of the heads of the local Autism Society and I was suddenly saddened to hear her describe the reason many mothers or families didn't participate in many of the activities. It's the same reason I never participated prior to now...I felt that because my kids weren't verbal we'd not fit in, so to speak. She tells me that the moms of kids who are non-verbal feel the same, that because there are so many of us with verbal kids they feel like that don't fit either. It breaks my heart to hear this. I wish so many more of us would get out there, share our stories and whether or not we're from verbal or non-verbal families, realize that in the grand scheme of things, we're all one big family! We all need to stand up together and educate, push for better legislation, better insurance coverage, better IEPs. We need to stand up and ROAR! Not be sitting on our own side of the respective fences and be afraid to put ourselves out there. We all know the behaviors, we all know that no child is the same and it's truly sad that we're not willing to come forward more and be apart of something special. If you know someone who is afraid to come to a local autism event because either they're child(ren), are verbal or because they're non verbal, please encourage them to just get up and out and participate! I can't tell you how essential our mental health is as the caregivers to our kiddos. Please take a minute and support yourself, or if you are the caregiver reading this, please stop and do something for yourself today. Most importantly, connect with other people in your local community, you need that support. Lets all roar together!
Wednesday, August 21, 2013
I forgot...
There are times that I honestly don't think about having special needs children. I don't think about how many appointments we have during the week, or what skills we need to work on during the day, or even give a second thought to avoiding family functions, etc.. It's just our life and it's no longer a truly big deal.
Then you get days like today, where after one exhausting episode, you feel the weight of every little slight, every misstep and the whole ball of wax feels like the weight of the world is on your shoulders. You realize everything that you've done wrong and pray for some respite from the chaos.
It's not often I feel this way. Most of the time I have two mottoes that I live by and they keep me in check. One is never sweat the small stuff, remembering of course that unless it's life threatening, then it's all small stuff. Two is remember, it could ALWAYS be worse. Those two phrases have kept me off of the pity pot for the most part and kept my head on straight.
While it's disheartening to know that your child may not be the quarterback of his football team, nor will he win "most popular" at his school, my mottoes have kept me booking and onward to excepting both of their diagnosis and all that they entailed without looking back.
Then you get days like today...
Understanding a Dyspraxic, a child diagnosed with generalized anxiety disorder, OCD, ADHD, SPD, ODD and labeled with "autistic tendencies" is pretty simple to me, but even I get complacent when things are going well and I forget. Today, I forgot. It apparently was such a grievous mistake that now the entire neighborhood knows I forgot!
My husband had the day off and I decided I needed a break, a little me time if you will. We decided that he would take the boys to their OT and PT appointments today and I would relax at home on my own. I forgot to tell my oldest of the change in plans though...
It was a terrible scene and my husband finally got to witness one of his meltdowns in person. He will never complain about what he considered a "meltdown" again. lol It was some horrible scene you'd expect to see if someone was abducting your child! Complete with blood curdling screams, a child grasping at the door frames as he was carried to the car to go to his bi-weekly appointment. He was clawing at the walls, grasping onto me as if he was never going to see me again, all while screaming like someone was going to murder him. It was awful really.
The description, while I'm sure is horrifying to some, isn't even doing what happened justice! Needless to say after 20 minutes of prying him off of doorframes and myself more than once, he'd gotten my youngest so worked up, he was hysterical and scared and just wanted mommy as well.
Knowing that I could not fully explain to my youngest who still struggles with receptive language skills, what was going on and that he and his brother were really ok, my heart broke. I gave in and went. I KNOW I should've stayed home, the ABA and the psychologist would have given me a stern look for caving in and I know it was wrong, but looking at my little one's face, terrified out of his mind, I couldn't say no.
Afterwards, I was so exhausted. I am so exhausted. I'm upset with myself too. My neighbors who've been amazing through the years with the amount of screaming that I know they hear from my house, were even startled today. They know my children are special needs, but today even a few of them came out to see what was going on.
For those of you with neurotypical kiddos, imagine if you saw a mother and husband carrying their 8 yr old child out to the car, kicking, screaming for mommy, as if he was being abducted! I was painfully aware of how it must've looked, even to those who knew my children. It's times like this, I want to crawl back into my room and not come out for a day. Partly out of embarrassment, and yes, even after all these years, I still struggle with accepting those people who look down their noses and not understanding. The other part of me that wants to go in my room is exhausted - mentally and physically. I can't tell you what kind of a toll this can take on a person and it doesn't help that as soon as it's over, all I can think is that he's only 8, how many more years of this can I keep doing? How often is he going to keep doing this? Which we all know better than to do. lol Today though, I did all of those things and it got the better of me.
I've sat in my room now, one kiddo in bed and the other snuggled up under my left arm, passed out for two hours now thinking about my actions and emotions. I've come to realize three things. One, tomorrow is another, brand new, bright, fresh and cheery day. Two, don't sweat the small stuff - this is small stuff and three, it could've been much worse. Fingers crossed tomorrow is another day.
Then you get days like today, where after one exhausting episode, you feel the weight of every little slight, every misstep and the whole ball of wax feels like the weight of the world is on your shoulders. You realize everything that you've done wrong and pray for some respite from the chaos.
It's not often I feel this way. Most of the time I have two mottoes that I live by and they keep me in check. One is never sweat the small stuff, remembering of course that unless it's life threatening, then it's all small stuff. Two is remember, it could ALWAYS be worse. Those two phrases have kept me off of the pity pot for the most part and kept my head on straight.
While it's disheartening to know that your child may not be the quarterback of his football team, nor will he win "most popular" at his school, my mottoes have kept me booking and onward to excepting both of their diagnosis and all that they entailed without looking back.
Then you get days like today...
Understanding a Dyspraxic, a child diagnosed with generalized anxiety disorder, OCD, ADHD, SPD, ODD and labeled with "autistic tendencies" is pretty simple to me, but even I get complacent when things are going well and I forget. Today, I forgot. It apparently was such a grievous mistake that now the entire neighborhood knows I forgot!
My husband had the day off and I decided I needed a break, a little me time if you will. We decided that he would take the boys to their OT and PT appointments today and I would relax at home on my own. I forgot to tell my oldest of the change in plans though...
It was a terrible scene and my husband finally got to witness one of his meltdowns in person. He will never complain about what he considered a "meltdown" again. lol It was some horrible scene you'd expect to see if someone was abducting your child! Complete with blood curdling screams, a child grasping at the door frames as he was carried to the car to go to his bi-weekly appointment. He was clawing at the walls, grasping onto me as if he was never going to see me again, all while screaming like someone was going to murder him. It was awful really.
The description, while I'm sure is horrifying to some, isn't even doing what happened justice! Needless to say after 20 minutes of prying him off of doorframes and myself more than once, he'd gotten my youngest so worked up, he was hysterical and scared and just wanted mommy as well.
Knowing that I could not fully explain to my youngest who still struggles with receptive language skills, what was going on and that he and his brother were really ok, my heart broke. I gave in and went. I KNOW I should've stayed home, the ABA and the psychologist would have given me a stern look for caving in and I know it was wrong, but looking at my little one's face, terrified out of his mind, I couldn't say no.
Afterwards, I was so exhausted. I am so exhausted. I'm upset with myself too. My neighbors who've been amazing through the years with the amount of screaming that I know they hear from my house, were even startled today. They know my children are special needs, but today even a few of them came out to see what was going on.
For those of you with neurotypical kiddos, imagine if you saw a mother and husband carrying their 8 yr old child out to the car, kicking, screaming for mommy, as if he was being abducted! I was painfully aware of how it must've looked, even to those who knew my children. It's times like this, I want to crawl back into my room and not come out for a day. Partly out of embarrassment, and yes, even after all these years, I still struggle with accepting those people who look down their noses and not understanding. The other part of me that wants to go in my room is exhausted - mentally and physically. I can't tell you what kind of a toll this can take on a person and it doesn't help that as soon as it's over, all I can think is that he's only 8, how many more years of this can I keep doing? How often is he going to keep doing this? Which we all know better than to do. lol Today though, I did all of those things and it got the better of me.
I've sat in my room now, one kiddo in bed and the other snuggled up under my left arm, passed out for two hours now thinking about my actions and emotions. I've come to realize three things. One, tomorrow is another, brand new, bright, fresh and cheery day. Two, don't sweat the small stuff - this is small stuff and three, it could've been much worse. Fingers crossed tomorrow is another day.
Monday, June 24, 2013
Life since Dyspraxia Diagnosis
I haven't written in so long. Life is so many kinds of crazy now, truly it is. We're starting homeschool with my oldest in less than a week now and I've had to relearn, revamp and reapply every thing I've taught him thus far since learning FINALLY of his correct diagnosis, before the end of the last school year. He was diagnosed with Developmental Dyspraxia.
Then there is learning how to circumnavigate my youngest's form of autism (ASD). He's very verbal, though his receptive language skills are a bit off. He often will say the opposite of what he means, gets confused very easily in a conversation and frustrated when he can't convey what he means. These are just a few of his issues with communication. Don't include the sensory issues, sensory sessions at home, with his OT and even his PT has resorted to doing OT in her session with him, he's in that much of a need for it. I could go on, but you get the gist - CRAZY CRAZY time at my house!
My oldest is finally making progress though! He can tie his shoe now, well he can mostly tie his shoe now. Which is fantastic! So what if I have to retie it sometimes, most of the time or if he can only do it once or twice a day, the point is, he can do it now!!!
He can write pretty well now too. He might be a kindergarten level now, but at least it's legible. Who cares if it's written as big as your head, at least you can read it! Because of being able to kind of write the alphabet better, he has taken to reading a bit more on his own and attempting to write things out by sounding them out, rather than continually asking me how to do it. Which is HUGE! We're working on pencil grip now, in the hopes that this will be kind of the last key in getting him where he needs to be.
Riding a bike....this is a work in progress for sure. He needs to learn balance and them time his right and left legs/feet to go at the same time...it could take a while. Seriously though, he has started to run a bit better now too. Not all squatty and arms out in a defensive position. He can almost pass for normal running though.
Once he's a bit farther ahead, we work on his ASL, which he's avoided doing because obviously, if you haven't guessed it yet, Dyspraxia affects many, many things, including motor skills. So, sign language has been a bit tricky for him, but we finally have hope that he might be able to sign without frustration or much issue one day. Makes both him and myself feel much better.
Now, we work on memory skills...I've no idea how we're going to do this, but I'm game. Since getting the correct diagnosis, he's come so very far and I'm so very proud of him. I can't believe it's only been a few short months of this and he's made such huge strides. It's been so inspiring to say the least.
Then there is learning how to circumnavigate my youngest's form of autism (ASD). He's very verbal, though his receptive language skills are a bit off. He often will say the opposite of what he means, gets confused very easily in a conversation and frustrated when he can't convey what he means. These are just a few of his issues with communication. Don't include the sensory issues, sensory sessions at home, with his OT and even his PT has resorted to doing OT in her session with him, he's in that much of a need for it. I could go on, but you get the gist - CRAZY CRAZY time at my house!
My oldest is finally making progress though! He can tie his shoe now, well he can mostly tie his shoe now. Which is fantastic! So what if I have to retie it sometimes, most of the time or if he can only do it once or twice a day, the point is, he can do it now!!!
He can write pretty well now too. He might be a kindergarten level now, but at least it's legible. Who cares if it's written as big as your head, at least you can read it! Because of being able to kind of write the alphabet better, he has taken to reading a bit more on his own and attempting to write things out by sounding them out, rather than continually asking me how to do it. Which is HUGE! We're working on pencil grip now, in the hopes that this will be kind of the last key in getting him where he needs to be.
Riding a bike....this is a work in progress for sure. He needs to learn balance and them time his right and left legs/feet to go at the same time...it could take a while. Seriously though, he has started to run a bit better now too. Not all squatty and arms out in a defensive position. He can almost pass for normal running though.
Once he's a bit farther ahead, we work on his ASL, which he's avoided doing because obviously, if you haven't guessed it yet, Dyspraxia affects many, many things, including motor skills. So, sign language has been a bit tricky for him, but we finally have hope that he might be able to sign without frustration or much issue one day. Makes both him and myself feel much better.
Now, we work on memory skills...I've no idea how we're going to do this, but I'm game. Since getting the correct diagnosis, he's come so very far and I'm so very proud of him. I can't believe it's only been a few short months of this and he's made such huge strides. It's been so inspiring to say the least.
Saturday, March 30, 2013
I Gonna Wear Hearing Aids...
This is what my youngest declared happily to his new audiologist last week. To which she actually said, "You just might buddy."
His daddy, his beloved Papa and older brother wear them as does his half sister, who he's met a few times. She's much older and has her own life so she doesn't get to visit too often. So, aside from myself he is the only one without aids. So, I can see why he'd say it.
There is nothing wrong with that. Absolutely nothing!
He'd just finished his hearing eval though and the news was mixed to say the least. After being told for several years that his hearing was fine, I was just told that it was not. I wasn't upset at this though. I mean I was, obviously I was, how do people get to decide that a bottom of the "normal" range is NORMAL?! And then tell you, your child's hearing is fine.
I find out that his tympanograms show middle ear dysfunction of some kind, especially in one ear. That his last test and current test show a very mild hearing loss until you get to the higher frequencies, where he hears just fine. It sits directly on the border of where the "normal" hearing and "mild loss" line is. So, I guess that it's up for interpretation, but still in a family with a deaf history, don't you think that this was worth mentioning?!
I've been after him for months to pay attention, turn down the TV, turning my back when I talk to him, even walking away when I'm speaking, etc. Now, how awful do I feel?! The audiologist is concerned enough at where it sits to have us come back in another 4 weeks to recheck even.
So, am I upset? HECK YES! Am I upset that he might be aided? No.
Yes, that's right, no I am not upset at this. Is it wrong that part of me is hopeful that he gets his aids? I'm sure as a hearing parent some would say so. I mean we want our children to hear our voices, to hear theirs, right? Being really the only hearing person in this Deaf house though, I realize that it is just as important to HoH/Deaf people to want to have the same camaraderie. The only hearing boy in the house wants to be like his Papa, his daddy and his brother, what's wrong with that? Nothing.
My only concern is that all indications are that there is something in the middle ear not moving and that it might require more tests and possible surgery to fix. Though his loss is on both ears, indications are that one has this middle ear problem but, we won't know for another month!
It's always the waiting that kills me though. I hate waiting. I've never been good at it, you could ask anyone that knows me and while these boys have taught me some bit of patience, where it concerns them, I feel like that kid in the candy store who is told not to touch anything...I'm completely hopeless! lol
His daddy, his beloved Papa and older brother wear them as does his half sister, who he's met a few times. She's much older and has her own life so she doesn't get to visit too often. So, aside from myself he is the only one without aids. So, I can see why he'd say it.
There is nothing wrong with that. Absolutely nothing!
He'd just finished his hearing eval though and the news was mixed to say the least. After being told for several years that his hearing was fine, I was just told that it was not. I wasn't upset at this though. I mean I was, obviously I was, how do people get to decide that a bottom of the "normal" range is NORMAL?! And then tell you, your child's hearing is fine.
I find out that his tympanograms show middle ear dysfunction of some kind, especially in one ear. That his last test and current test show a very mild hearing loss until you get to the higher frequencies, where he hears just fine. It sits directly on the border of where the "normal" hearing and "mild loss" line is. So, I guess that it's up for interpretation, but still in a family with a deaf history, don't you think that this was worth mentioning?!
I've been after him for months to pay attention, turn down the TV, turning my back when I talk to him, even walking away when I'm speaking, etc. Now, how awful do I feel?! The audiologist is concerned enough at where it sits to have us come back in another 4 weeks to recheck even.
So, am I upset? HECK YES! Am I upset that he might be aided? No.
Yes, that's right, no I am not upset at this. Is it wrong that part of me is hopeful that he gets his aids? I'm sure as a hearing parent some would say so. I mean we want our children to hear our voices, to hear theirs, right? Being really the only hearing person in this Deaf house though, I realize that it is just as important to HoH/Deaf people to want to have the same camaraderie. The only hearing boy in the house wants to be like his Papa, his daddy and his brother, what's wrong with that? Nothing.
My only concern is that all indications are that there is something in the middle ear not moving and that it might require more tests and possible surgery to fix. Though his loss is on both ears, indications are that one has this middle ear problem but, we won't know for another month!
It's always the waiting that kills me though. I hate waiting. I've never been good at it, you could ask anyone that knows me and while these boys have taught me some bit of patience, where it concerns them, I feel like that kid in the candy store who is told not to touch anything...I'm completely hopeless! lol
Tuesday, February 26, 2013
A little girl named Mary
It occurs to me that I haven't written anything in a long time.
Life gets in the way sometimes. All the expected things and all the completely unexpected things as well.
Today I need to get some things off of my chest. So many people I know are pregnant, which is great and exciting and a truly wonderful thing. Yet, I feel a little sad by it and frustrated. For many reasons really, not just one thing.
Not because I've been trying to have more kiddos. I physically can't...well, I could but, risk dying of hemorrhaging on the table rise exponentially each kiddo I have. Yes, that means I literally almost died having my first son. And while they were ready for the second time, I was told the scar tissue, etc. was extensive and the risk of bleeding out again would be greater. So, despite the fact that I always imagined 4+ kiddos, I opted to have my tubes tied. There will be no more trying for any new addition for me. While this fills me with a mix of emotions, I've slowly come to terms with it over the years.
So, why am I sad and frustrated?
It's the things that no one talks about when you're pregnant. The things, as a pregnant mother we don't want to talk about or think about. We want the baby born on term, with ten fingers and toes. Babies who can eat formula or breast milk, who doesn't need any surgeries to survive and will never know what a NICU is. We want that and we all have a right to that, to hope for that.
I know I was that way and I know that one little girl, Mary, was her name, changed my whole life and I was never more grateful that she did too.
I was somewhere between 6 - 8 months pregnant with my oldest son when I met her. I hadn't yet been diagnosed with gestational diabetes, I was rather large for my gestation but, still didn't yet know that there was anything wrong. I was blissfully ignorant and my baby was going to be the prom queen or the football star...
I went to my husband's relative's funeral and there she was. I saw Mary instantly across the parlor. Long dark hair, cut in a straight line. She had bangs too and glasses and smiled at everyone as they passed her. She stuck close to her mother, was probably the most well behaved child I'd even seen really. I did my best to avoid her though just the same. Which was hard because I couldn't stop glancing at her from across the way and when she spied my gigantic belly, her eyes got wide and gleamed with immediate fascination. I made excuses to leave the group Mary and her mother were headed towards several times. Up until I finally could avoid them no longer without it being obvious.
She stood there, looking at my belly, not really saying anything for a long time. Just smiling at me, as if I was a Disney Princess! I tried my best not to look at her though.Until she finally asked to touch my tummy even before she did so, which to be honest was more polite than most adults really. She asked me if it was a boy or a girl, again very politely. At one point as everyone sat on the chaise lounges or chairs, I sat on the floor as it was much easier to get up and down for me...weird I know but, trust me, it was easier!
Mary, who was still glowing at me with her beautiful smile, asked if she could sit next to me. Which again, more polite than most children. She asked me several times if she could touch my tummy and each time I let her, she began to talk to me here and there. Always polite and always with a cute smile and gleaming delight in her eyes.
Every fear I'd secretly harbored, every worry I'd ever had about the well being of my child, I'd come face to face with in those moments. When I left there, I'd made up my mind, no matter what, it'd all be ok. Mary's innocent heart, her eternal curiosity, her bright eyes and beautiful smile, opened my heart to everything that day. I tear up even now, just thinking of her and that day. She forever changed my world that day.
So weeks later when I found out that something was physically wrong with my son, I thought of Mary and knew it would be ok. Months later when they told me that my son would most likely be cognitively delayed or physically handicapped in some way, I thought of Mary and KNEW it would be ok.
Years later, when I became pregnant again, all the "What ifs" raced through my mind but, I thought of Mary and knew that we'd be alright. And when my oldest son began to feel comfortable socializing, a "friend" of mine at the time expressed her concern that the children of choice for him were the ones with Down Syndrome and only those children. I immediately thought of Mary and told this woman, "we could only be so lucky".
Life gets in the way sometimes. All the expected things and all the completely unexpected things as well.
Today I need to get some things off of my chest. So many people I know are pregnant, which is great and exciting and a truly wonderful thing. Yet, I feel a little sad by it and frustrated. For many reasons really, not just one thing.
Not because I've been trying to have more kiddos. I physically can't...well, I could but, risk dying of hemorrhaging on the table rise exponentially each kiddo I have. Yes, that means I literally almost died having my first son. And while they were ready for the second time, I was told the scar tissue, etc. was extensive and the risk of bleeding out again would be greater. So, despite the fact that I always imagined 4+ kiddos, I opted to have my tubes tied. There will be no more trying for any new addition for me. While this fills me with a mix of emotions, I've slowly come to terms with it over the years.
So, why am I sad and frustrated?
It's the things that no one talks about when you're pregnant. The things, as a pregnant mother we don't want to talk about or think about. We want the baby born on term, with ten fingers and toes. Babies who can eat formula or breast milk, who doesn't need any surgeries to survive and will never know what a NICU is. We want that and we all have a right to that, to hope for that.
I know I was that way and I know that one little girl, Mary, was her name, changed my whole life and I was never more grateful that she did too.
I was somewhere between 6 - 8 months pregnant with my oldest son when I met her. I hadn't yet been diagnosed with gestational diabetes, I was rather large for my gestation but, still didn't yet know that there was anything wrong. I was blissfully ignorant and my baby was going to be the prom queen or the football star...
I went to my husband's relative's funeral and there she was. I saw Mary instantly across the parlor. Long dark hair, cut in a straight line. She had bangs too and glasses and smiled at everyone as they passed her. She stuck close to her mother, was probably the most well behaved child I'd even seen really. I did my best to avoid her though just the same. Which was hard because I couldn't stop glancing at her from across the way and when she spied my gigantic belly, her eyes got wide and gleamed with immediate fascination. I made excuses to leave the group Mary and her mother were headed towards several times. Up until I finally could avoid them no longer without it being obvious.
She stood there, looking at my belly, not really saying anything for a long time. Just smiling at me, as if I was a Disney Princess! I tried my best not to look at her though.Until she finally asked to touch my tummy even before she did so, which to be honest was more polite than most adults really. She asked me if it was a boy or a girl, again very politely. At one point as everyone sat on the chaise lounges or chairs, I sat on the floor as it was much easier to get up and down for me...weird I know but, trust me, it was easier!
Mary, who was still glowing at me with her beautiful smile, asked if she could sit next to me. Which again, more polite than most children. She asked me several times if she could touch my tummy and each time I let her, she began to talk to me here and there. Always polite and always with a cute smile and gleaming delight in her eyes.
Every fear I'd secretly harbored, every worry I'd ever had about the well being of my child, I'd come face to face with in those moments. When I left there, I'd made up my mind, no matter what, it'd all be ok. Mary's innocent heart, her eternal curiosity, her bright eyes and beautiful smile, opened my heart to everything that day. I tear up even now, just thinking of her and that day. She forever changed my world that day.
So weeks later when I found out that something was physically wrong with my son, I thought of Mary and knew it would be ok. Months later when they told me that my son would most likely be cognitively delayed or physically handicapped in some way, I thought of Mary and KNEW it would be ok.
Years later, when I became pregnant again, all the "What ifs" raced through my mind but, I thought of Mary and knew that we'd be alright. And when my oldest son began to feel comfortable socializing, a "friend" of mine at the time expressed her concern that the children of choice for him were the ones with Down Syndrome and only those children. I immediately thought of Mary and told this woman, "we could only be so lucky".
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