It's hard to be a mom of two crazy tornadoes, run two blogs, homeschool, be an advocate for various things, participate in an online support group or twelve and run another online support group! Sometimes I drop a ball or two! Unfortunately, this blog is often the ball that gets dropped!
Or I overlook something soo incredibly simple, I feel like the world's most idiotic mother! :D It's hard though between all of DW's issues and needs, trying to balance what each kiddo needs, what I need to do yet and what I've left till tomorrow. Though sometimes, I will admit that it can get almost overwhelming and occasionally I will visit denial land where one or both boys are just fine and they are not. Hence, I drop a ball. :\
Case in point, my youngest JD....he was thought to have Apraxia of Speech but, now they are leaning more towards a language disorder. Basically, there is some portion of his brain that cannot "hear" correctly, even though his hearing is fine. Somewhere in there word retrieval is also suffering, as well as the words coming out don't come out or don't come out entirely correct. So, while the rest of the world, including myself, thinks he is saying one thing, most often he is saying another. Or he repeats the end of a sentence said to him, or even his own, because this is all he can process. So communication with him has been tough to say the least. He never hears anyone call his name and unless you are practically nose to nose with him and have eye contact! It is amusing and stressful all rolled into one.
Anyway, we've made what to the outside world I think, would seem like a baby step but, here between us, it is a HUGE thing. It was suggested that I make picture cards for him by his SLP and then by some other mothers who have children with similar language problems, for meal times, and various other things like toys, clothes, etc. So, today was the first time I implemented it during meal time and now I am kicking myself for not having done it sooner!
JD was calm and was able to tell me what he wanted! He even ate all of his meal!! Without issues and without eating the "good stuff" first. He picked a sandwich, peaches and gluten free pretzels. Instead of eating the peaches first and then yelling, he ate his sandwich first, then his pretzels and then the peaches. Not a thing was left over! AND neither, DW nor I had to redirect him to eat! It was fantastic!! Two meals went by with no yelling, no begging, pleading or chasing after him with bits of food!
As a bonus, DW gets to pick out his food for the entire day and this way, he knows it's coming, he's prepared and if he refuses to eat, it is his own fault. He's responded so well to it, that he's not had an empty plate all day! :)
JD was so pleased to be understood though, that he decided that the next thing he was going to eat was......you guessed it, Cheerios! ;)
Friday, October 21, 2011
Tuesday, September 20, 2011
10 Things I Want Everyone to Know About My Boys on the SPD Blogger Network
Check out my newest post on the SPD Blogger Network right here. Almost everything anyone with an special needs kiddo has ever wanted to say to friend, family and/or strangers. Head over there and check it out if you can!
Monday, September 19, 2011
Different is the New Normal
It's finally out! Here's the link to: Different is the New Normal, featuring Ariel Small among other children with Tourette Syndrome.
Totally worth checking out if you want to know more about Tourette Syndrome, you want to show your kiddos, or share with family and friends!
http://watch.thirteen.org/video/2135738235
Totally worth checking out if you want to know more about Tourette Syndrome, you want to show your kiddos, or share with family and friends!
http://watch.thirteen.org/video/2135738235
Saturday, September 10, 2011
How Things are Going
It's been a while since I've posted. Life is SOOO crazy right now! A good crazy though! :) A quick update:
JD finally at 3yrs old got his very first cold. His very first anything really, the poor guy has NEVER been sick! Which was funny as heck because he didn't recognize snot! :D He was freaking out over it! Like it was some kind of evil alien attached to his face. It was really priceless, up until he then shared it with me and then his big brother. Though for the first time ever, DW got it and it was like some kind of gnat to him. He was done in two days! Though it did give me an idea as to how delicate his stomach really is. Messed his GI tract up something terrible. Only yesterday did he seem to get right where his tummy was concerned.
DW had a myriad of tests run. There is worry about his once again dropping weight and that he's slowly dropping down the growth chart. All tests, save one came back alright. His thyroid showed some minor issues but, it would explain his inability to put weight on and problems with his growth. He has to go back in December to have another blood test to confirm whether his reading was a fluke or he has a problem.
JD finally at 3yrs old got his very first cold. His very first anything really, the poor guy has NEVER been sick! Which was funny as heck because he didn't recognize snot! :D He was freaking out over it! Like it was some kind of evil alien attached to his face. It was really priceless, up until he then shared it with me and then his big brother. Though for the first time ever, DW got it and it was like some kind of gnat to him. He was done in two days! Though it did give me an idea as to how delicate his stomach really is. Messed his GI tract up something terrible. Only yesterday did he seem to get right where his tummy was concerned.
DW had a myriad of tests run. There is worry about his once again dropping weight and that he's slowly dropping down the growth chart. All tests, save one came back alright. His thyroid showed some minor issues but, it would explain his inability to put weight on and problems with his growth. He has to go back in December to have another blood test to confirm whether his reading was a fluke or he has a problem.
He had some allergy tests done because something he ate several weeks back, caused his throat to feel tight. They all came back normal. Which was good but, worrisome as the doc and I have no idea what made him react that way.
On top of this, I've developed a cleaning bug. I literally spend all day cleaning, reorganizing and getting every corner of the house all perfect. Or at least perfect to me! :) I'm back to baking like a mad woman, cooking like a nutter and redoing rooms. I'm happier than I've been in years! It feels good to do the things you were born to do, to do the things that make you happy and be organized on top of it all. For the first time in years, I'm juggling a bunch of balls and feel like I actually can juggle them all!
DW's lost his third tooth. His tics ramped up for a while. I think it was his new meds, a combo of the first med and then this one we tried. He's settled down though now, his tics way more obvious than they have been in almost a year but, nothing too terrible for him. He now brings them up when he's upset, excited or nervous but, he's almost like a normal kiddo now. He goes to sleep by 9pm, his bedtime as little brother's is at 8:30. He is social to people now, which he wasn't so much before. He's just happier overall. Which is a good thing to see.
DW's lost his third tooth. His tics ramped up for a while. I think it was his new meds, a combo of the first med and then this one we tried. He's settled down though now, his tics way more obvious than they have been in almost a year but, nothing too terrible for him. He now brings them up when he's upset, excited or nervous but, he's almost like a normal kiddo now. He goes to sleep by 9pm, his bedtime as little brother's is at 8:30. He is social to people now, which he wasn't so much before. He's just happier overall. Which is a good thing to see.
For now, this moment, life is incredible and I've never felt more lucky. :)
Tuesday, August 23, 2011
My Blog Contribution is Up for the SPDBN!
My contribution for the SPDBN (Sensory Processing Disorder Blogger Network) is up today! I'm so excited. So, if anyone out here in cyber space wants a peek into the world of SPD, come over and check it out!
The Cold, The Hot and The Crunchy!
The Cold, The Hot and The Crunchy!
Wednesday, August 10, 2011
Sometimes you need a secretary
I love my boys' OT/PT/SLP place. For the uninitiated OT: Occupational therapy, PT: Physical therapy and SLP: speech language pathology. I love these women and think that they deserve so much more credit, rewards and acknowledgment than they get.
Today, after DW's OT and JD's OT/SLP session, the OTs came out to talk to me. Telling me that I need to start up brushing again, something that in the chaos of my life after JD was born, I'd kind of just phased out. This time I need to do it for both boys. Ideally she would like every couple of hours, which is where we were before but, as there are two of them, we homeschool and it's crazy, so she requested that it get done at least before every meal.
Ok, alright, I'm doing the schedule for the start of our upcoming school year anyway, I can work this in. Just need to remember that JD can only tolerate it over his clothes except on his feet. DW can do it bare armed, legged and back but, once you remove his braces, he has to have his socks on.....ok, mental note made.
She then said, as if it is nothing in addition to all that we've talked about (and it's not all noted here), back to joint compression for both boys, how many times a day I managed to forget to ask, though I know it is probably a few times a day as it was before. Another mental note made.
DW's OT comes out and hands me a paper. Both OTs have noticed that he was chewing on his fingers finally. Even though I have mentioned that he will chew them until they bleed. I explained that I had bought a bunch of chewies from a therapy shop online but, suddenly he's stopped using them. She tells me that this is a list of items that may help with his oral issues.
I got home and read the list and almost died laughing. Most everything on there he will not touch, use or smell! :D Out of at least 30 items on that list, it came down to pickles, lemon drops and gummy worms & bears. These are the only ones I can easily see him chewing on. Even the lemon drops are pushing it, I know he will surely suck on them but, biting into a hard thing, so far out of his comfort zone. :S
My only hope is that I've spent the better part of 2 weeks now convincing him to try bubble gum. He's still on the fence about it but, I know if I buy some and have it on hand now, he might decide to give it a go.
So, now I have calendar in every room of the house, one on my computer and have to buy a personal one now too. With notes for 3+ appts a week, therapies that need to be done daily, regular scheduled OT stuff that we do at home, like bed jumping, couch to crash pad, etc. homeschool schedule, other doc appts, etc. Notes on every calendar for things from therapies to be done at home to grocery lists - including the suggested items that came on the list, allergy free foods, etc. It might be overkill to some but, when you're life is as crazy as this one is, there is no lengths I won't go to, to be prepared! :D
I've decided that now I need a chauffeur and a secretary! :D
Today, after DW's OT and JD's OT/SLP session, the OTs came out to talk to me. Telling me that I need to start up brushing again, something that in the chaos of my life after JD was born, I'd kind of just phased out. This time I need to do it for both boys. Ideally she would like every couple of hours, which is where we were before but, as there are two of them, we homeschool and it's crazy, so she requested that it get done at least before every meal.
Ok, alright, I'm doing the schedule for the start of our upcoming school year anyway, I can work this in. Just need to remember that JD can only tolerate it over his clothes except on his feet. DW can do it bare armed, legged and back but, once you remove his braces, he has to have his socks on.....ok, mental note made.
She then said, as if it is nothing in addition to all that we've talked about (and it's not all noted here), back to joint compression for both boys, how many times a day I managed to forget to ask, though I know it is probably a few times a day as it was before. Another mental note made.
DW's OT comes out and hands me a paper. Both OTs have noticed that he was chewing on his fingers finally. Even though I have mentioned that he will chew them until they bleed. I explained that I had bought a bunch of chewies from a therapy shop online but, suddenly he's stopped using them. She tells me that this is a list of items that may help with his oral issues.
I got home and read the list and almost died laughing. Most everything on there he will not touch, use or smell! :D Out of at least 30 items on that list, it came down to pickles, lemon drops and gummy worms & bears. These are the only ones I can easily see him chewing on. Even the lemon drops are pushing it, I know he will surely suck on them but, biting into a hard thing, so far out of his comfort zone. :S
My only hope is that I've spent the better part of 2 weeks now convincing him to try bubble gum. He's still on the fence about it but, I know if I buy some and have it on hand now, he might decide to give it a go.
So, now I have calendar in every room of the house, one on my computer and have to buy a personal one now too. With notes for 3+ appts a week, therapies that need to be done daily, regular scheduled OT stuff that we do at home, like bed jumping, couch to crash pad, etc. homeschool schedule, other doc appts, etc. Notes on every calendar for things from therapies to be done at home to grocery lists - including the suggested items that came on the list, allergy free foods, etc. It might be overkill to some but, when you're life is as crazy as this one is, there is no lengths I won't go to, to be prepared! :D
I've decided that now I need a chauffeur and a secretary! :D
Friday, July 29, 2011
A Sense of Humor Can Always Save the Day!
So the truth is, that despite the emotionally heavy posts I sometimes lay down here, I have an extremely humorous personality. Though my sense of humor might be slightly warped! :D I have found humor can be the only way out of what can be a extremely heavy, stressful life.
Today is no exception to that rule!
We went to the audiologist's office, where the normal lady was sick. DW does not do new people so well....needless to say, this is where the whole morning went wrong! :D lol
First this audiologist managed to keep sticking the long, soft probe thing in the wrong place, over and over and over again. Which prompted the screams, tears and panic attack he subsequently had, that I had to talk him down from. He did well though! :)
SPD took over and he couldn't handle being able to hear out of both ears and begged for one aid to be turned down....
On the way out, he begins crying because he wanted to play with the bubbles because "he earned it" by having his ears hurt! lol
So, as I attempted to load the boys up in the van afterwards, DW still crying because he wanted to play with bubbles and then be checked into the playroom on the way out, JD is freaking out because he wanted to push every button on the elevator and then go up stairs to another level of hospital. Here's your daily funny:
As I looked around at the situation, standing outside the back of Boys Town National Research Hospital. A parking lot full of cars and people coming and going, security giving me the evil eye, JD has put himself in timeout IN THE MIDDLE of the parking lot! lol DW is dragging his feet and crying and of course, my frizzy hair is flying with reckless abandon in my face, mocking me.....I took stock of the situation and the stares and then did what any good mother would do!
I sat down in the middle of the parking lot and cried loudly too!! Minus a little bit of the pride I have left, the kids stopped crying and I felt a little better! I don't recommend this for the faint of heart though! I mean I didn't really cry but, mostly pretended to have a loud fit. :D Still, it was highly effective!
What dispelled the tension and frustration for a time though, failed to hold the mood for long. JD's SPD rearing it's ugly head and now the car seat doesn't feel right, he is yelling and screaming. He wants out and he wants out now. DW is yelling because one of his biggest Sensory issues is getting wet and while trying to get everyone in the van it had started to rain and he now feels a wet spot on his shorts......
At a loss and a point where I could again to choose to really cry OR I could choose humor to get through, you bet your bum I chose to find humor. :) I hollered out, "that's it, we're going and we're going now!" Which prompted them to look at me waiting for me to finish. I did not. I simply backed the van up and drove away. Sitting in silence as the boys seemed bewildered and uncomfortable, I flashed back to when I was little and my mother used to do this.
It was always THE worst of days. We were out of control, she would be crying and/or yelling or very close to it. She would either not cry and yell or pull herself together and march us to the car without a word. If we asked where we were going, which I was waiting for DW to do, her reply was, "we're going crazy"! lol So, I waited for DW to ask and my response was the same. Only instead of going to the Dairy Queen, as this was our "going crazy" spot but, my boys are milk protein intolerant, we arrived promptly at Runza, where insanely instead of hitting the drive through, I removed them from the van and marched up to the entrance proudly with the two loves of my life. Where believe it or not, we had an amazing time! :)
Today is no exception to that rule!
We went to the audiologist's office, where the normal lady was sick. DW does not do new people so well....needless to say, this is where the whole morning went wrong! :D lol
First this audiologist managed to keep sticking the long, soft probe thing in the wrong place, over and over and over again. Which prompted the screams, tears and panic attack he subsequently had, that I had to talk him down from. He did well though! :)
SPD took over and he couldn't handle being able to hear out of both ears and begged for one aid to be turned down....
On the way out, he begins crying because he wanted to play with the bubbles because "he earned it" by having his ears hurt! lol
So, as I attempted to load the boys up in the van afterwards, DW still crying because he wanted to play with bubbles and then be checked into the playroom on the way out, JD is freaking out because he wanted to push every button on the elevator and then go up stairs to another level of hospital. Here's your daily funny:
As I looked around at the situation, standing outside the back of Boys Town National Research Hospital. A parking lot full of cars and people coming and going, security giving me the evil eye, JD has put himself in timeout IN THE MIDDLE of the parking lot! lol DW is dragging his feet and crying and of course, my frizzy hair is flying with reckless abandon in my face, mocking me.....I took stock of the situation and the stares and then did what any good mother would do!
I sat down in the middle of the parking lot and cried loudly too!! Minus a little bit of the pride I have left, the kids stopped crying and I felt a little better! I don't recommend this for the faint of heart though! I mean I didn't really cry but, mostly pretended to have a loud fit. :D Still, it was highly effective!
What dispelled the tension and frustration for a time though, failed to hold the mood for long. JD's SPD rearing it's ugly head and now the car seat doesn't feel right, he is yelling and screaming. He wants out and he wants out now. DW is yelling because one of his biggest Sensory issues is getting wet and while trying to get everyone in the van it had started to rain and he now feels a wet spot on his shorts......
At a loss and a point where I could again to choose to really cry OR I could choose humor to get through, you bet your bum I chose to find humor. :) I hollered out, "that's it, we're going and we're going now!" Which prompted them to look at me waiting for me to finish. I did not. I simply backed the van up and drove away. Sitting in silence as the boys seemed bewildered and uncomfortable, I flashed back to when I was little and my mother used to do this.
It was always THE worst of days. We were out of control, she would be crying and/or yelling or very close to it. She would either not cry and yell or pull herself together and march us to the car without a word. If we asked where we were going, which I was waiting for DW to do, her reply was, "we're going crazy"! lol So, I waited for DW to ask and my response was the same. Only instead of going to the Dairy Queen, as this was our "going crazy" spot but, my boys are milk protein intolerant, we arrived promptly at Runza, where insanely instead of hitting the drive through, I removed them from the van and marched up to the entrance proudly with the two loves of my life. Where believe it or not, we had an amazing time! :)
Monday, July 25, 2011
Bring on the funnies!
When you're a special needs momma doing it alone, you need two things: 1) the patience of Job (case in point my youngest just spilled his raspberry cider again and managed to do it on the clean clothes! :S ) and 2) a sense of humor!! :) I learned a long time ago that I could laugh at myself, don't ask how, though it would be quite amusing! :) The truth is, we all need a good laugh, it's extremely beneficial for your physical health as well as your emotional health, and may even uplift your spirit! So here are some of my funny statuses from FB, snippets of conversations I've had and things passed on from friends that make me laugh:
My "status" as of today:
Note to the person who keeps calling: When I don't answer the first two time, please consider that my sorry bum may be literally stuck head first, legs in the air behind a dresser trying to retrieve my sons pumpkin lovey. You can do one of two things: Leave a silly message or send help!! Just stop calling as in my rush to get to the phone, for I what I believe to be something important, I actually wedged myself further behind the dresser....again with legs in the air! Thank you for your time!
(I seriously had visions of the fire department showing up, which in turn would lead to a mysterious video showing up on Youtube! lol)
(I seriously had visions of the fire department showing up, which in turn would lead to a mysterious video showing up on Youtube! lol)
My theme video! :D Which is the song I sing when I'm having a REALLY bad day. Always makes someone laugh, which in turn makes me laugh! :)
A quote from Erma Bombeck:
One thing that they never tell you about child raising is that for the rest of your life, at the drop of a hat, you are expected to know your child's name and how old he or she is.
My response: They seem to take offense when I call them by the wrong name, who knew?! :D
Interesting factoids:
It takes 7 seconds for food to pass from mouth to stomach. A human hair can hold 3kg. The length of a penis is 3x the length of the thumb. The femur is as hard as concrete. A woman's beats faster than a man's. Women blink 2x as much as men. We use 300 muscles just to keep our balance when we stand. A woman has read this entire post. The man is still looking at his thumb.
My son's fav joke, which I chuckle for, in spite of myself: Pizza's are about the delivery. I know, it's bad right? :)
Lastly a snippet of a conversation with one of my fav ladies, us Cancers stick together. :)
L: Did you ever notice that when you walk into spiderwebs you suddenly become a ninja? I soo looked like that this morning.
Me: LOL Ninja does not describe what happens......I look more like a crazy, schizophrenic, cat lady, no one wants to talk to, trying to do some kind of touchdown victory dance! Screaming at thin air, doing some kind of drunk jig, waving my arms around talking and yelling to myself!!! Which then in turn leads to everyone thinking that my son actually got his TS from me because I spend the next hour twitching and jumping at nothing. Convinced that the web is still there and that there were millions of microscopic baby spiders that have made a nest in my hair or clothes.
Alright, I know that not everyone shares my sense of humor but, if one of these has not made you laugh or at least smile.....something is wrong!! ;)
Wednesday, January 19, 2011
Scary times and how we've dug our way out, Part 2
So, one night on the full vitamin regimen with probiotic I didn't think we'd see a single thing.
We were all sitting in the living room playing and watching a little TV when DW comes over and says, "I'm hungry".
We were stunned! I promptly got up and ran to get him food. As I may or may not have mentioned previously, he never knew when he was hungry!! I had to practically argue with him to get him to eat or drink!
The next day, he told us again that he was hungry. He drank a full 8 oz of fluid and by the end of the day, he hit 12 oz.!! This is not a lot in the grand scheme of things but, it was closer to 20oz than he'd been in weeks. For the first time in weeks, we were hopeful that we could keep him from the hospital!
Within four days, the minimum fluid intake was 12 oz. and closing in on 20 oz a day! He went from barely eating enough food to qualify as one meal to closing in on 2 meals a day! To top it off, he quit asking for all his "cheese" foods! Which prompted me to remove milk/casein from his diet on the third day.
That was a rough one because he acted out badly as his little body detoxed for a few days.
After two weeks, he dark purple circles under his eyes, I would come to know as "allergic shiners" disappeared completely! His skin went from grey and very pale white to a soft, porcelain, peach color! He was laughing and smiling! His eye contact which we'd worked so hard to maintain and had promptly disappeared was back!! His meltdowns dropped to almost nothing! He still had them but, they weren't at the level they were before!
Let me explain, if you've not had a Tourette Syndrome child or an ASD child, you'll not understand when I say "rage episode", it does not begin to cover it! There are tiers to rages in TS children or so I am told by the neuro. Rage being the first one, ODD (oppositional defiant disorder) being the second and the third is rare and it is called Explosive Behavior Disorder. This last one is where DW fell into. When he would have an episode, as we call them, he would break windows, tear his bed and bedroom apart, charge the bedroom door over and over again like a linebacker, which would always break where he hinges met the doorframe! This from a little 5 year old! He would hit, kick, bite, scream, etc. Children with EBD grow up to become wife beaters, in jail more often than not for assault! This was the lowest point in this whole journey for me!
So, to see these episodes drop to the level and lower even then when we first added medication to treat them, it was a miracle!
He still tics, especially when stressed or when he can let go at home, after being out are still there but, he went from not being able to finish a sentence, beating himself over and over again to barely having a noticeable tic! I know that there are down times but, even his down times were exhausting to watch! So, to see them just drop so drastically....again all I can say is miraculous!
His anxiety level over his OCD issues and Sensory things, while still there, have also dropped dramatically!
That's not to say that he doesn't have his days or his tics don't explode now and again but, the change simply from the vitamins, which prompted the removal of milk, has made a HUGE change in our lives!
For the first time in years, I have such hope for his future!
We were all sitting in the living room playing and watching a little TV when DW comes over and says, "I'm hungry".
We were stunned! I promptly got up and ran to get him food. As I may or may not have mentioned previously, he never knew when he was hungry!! I had to practically argue with him to get him to eat or drink!
The next day, he told us again that he was hungry. He drank a full 8 oz of fluid and by the end of the day, he hit 12 oz.!! This is not a lot in the grand scheme of things but, it was closer to 20oz than he'd been in weeks. For the first time in weeks, we were hopeful that we could keep him from the hospital!
Within four days, the minimum fluid intake was 12 oz. and closing in on 20 oz a day! He went from barely eating enough food to qualify as one meal to closing in on 2 meals a day! To top it off, he quit asking for all his "cheese" foods! Which prompted me to remove milk/casein from his diet on the third day.
That was a rough one because he acted out badly as his little body detoxed for a few days.
After two weeks, he dark purple circles under his eyes, I would come to know as "allergic shiners" disappeared completely! His skin went from grey and very pale white to a soft, porcelain, peach color! He was laughing and smiling! His eye contact which we'd worked so hard to maintain and had promptly disappeared was back!! His meltdowns dropped to almost nothing! He still had them but, they weren't at the level they were before!
Let me explain, if you've not had a Tourette Syndrome child or an ASD child, you'll not understand when I say "rage episode", it does not begin to cover it! There are tiers to rages in TS children or so I am told by the neuro. Rage being the first one, ODD (oppositional defiant disorder) being the second and the third is rare and it is called Explosive Behavior Disorder. This last one is where DW fell into. When he would have an episode, as we call them, he would break windows, tear his bed and bedroom apart, charge the bedroom door over and over again like a linebacker, which would always break where he hinges met the doorframe! This from a little 5 year old! He would hit, kick, bite, scream, etc. Children with EBD grow up to become wife beaters, in jail more often than not for assault! This was the lowest point in this whole journey for me!
So, to see these episodes drop to the level and lower even then when we first added medication to treat them, it was a miracle!
He still tics, especially when stressed or when he can let go at home, after being out are still there but, he went from not being able to finish a sentence, beating himself over and over again to barely having a noticeable tic! I know that there are down times but, even his down times were exhausting to watch! So, to see them just drop so drastically....again all I can say is miraculous!
His anxiety level over his OCD issues and Sensory things, while still there, have also dropped dramatically!
That's not to say that he doesn't have his days or his tics don't explode now and again but, the change simply from the vitamins, which prompted the removal of milk, has made a HUGE change in our lives!
For the first time in years, I have such hope for his future!
Saturday, January 15, 2011
Scary times and how we've dug our way out, Part 1
I know I've not really written a lot here lately....life has taken some crazy turns as of late!
DW's tics, rages, and any other behavior had gotten completely out of control. All the progress we'd made with various medications for his ADHD behaviors and anxiety seemed to just dissipate. His tics became increasingly violent and out of control. His functional abdominal pain took on a life of it's own again. He began to eat less and less, which led to drinking less and less. Since he has small kidneys and we were warned at birth about keeping an eye on them, this whole thing was really starting to scare me.
He began to turn grey and extremely white, dark purple circles under his eyes were now very common to see daily. He was at the bottom, very bottom, of the weight chart and there was talk from the doctor about taking medical action to stop his weight loss even. Already at the 5th percentile for his age group before all this began, the thought of how much he weighed before Christmas was making me sick.
He began to ONLY eat macaroni and cheese and want nothing else! Which having done some nutritional studies six years back when he was first diagnosed with MSPI, I knew could mean only one thing. That at 2 years old when all doctors and specialists reassured me that all kids outgrew their MSPI, they were wrong! I had learned some time ago that sometimes in certain intolerant or allergic individuals, they can become addicted to or crave the one food they are allergic to. So, my son repeatedly asking for macaroni, ice cream, etc. was a huge warning sign to me. Only, at this point, I would give in because some calories are better than none, right? If anyone has a child like this, we all no, that they will go days without eating if pushed too! I know, he's done it!
Right before Christmas I had resigned myself to the hospital stay I knew was inevitable. I was trying to figure out in my head how I would manage two children, one at home and one there. DW again, a very anxiety ridden child would not handle me being away from him, even for short periods of time. His father and him barely got along, so that would add more stress. JD would not understand what was going on and though I know that there are times he understands what I tell him, I'm not sure he always gets it and this would be one of those times.
Needless to say, I was almost beside myself, crying myself to sleep every night, begging, pleading for some miracle to happen. Every morning I'd wake though and it would all be the same. I was desperate and ready to try anything at this point.
Then a lady whom I've come to have much respect for, made a simple suggestion that would change our whole world. Ida, is a wonderful woman who works for and with Sensory Processing kiddos and their families. She had suggested putting DW on a LIQUID vitamin and probiotic. He already got a gummy vitamin because this was the only kind he could handle so I didn't see how a liquid would matter but, it turns out it would make all the difference in the world and lead to some more changes in our lives that so far, have been truly amazing!
DW's tics, rages, and any other behavior had gotten completely out of control. All the progress we'd made with various medications for his ADHD behaviors and anxiety seemed to just dissipate. His tics became increasingly violent and out of control. His functional abdominal pain took on a life of it's own again. He began to eat less and less, which led to drinking less and less. Since he has small kidneys and we were warned at birth about keeping an eye on them, this whole thing was really starting to scare me.
He began to turn grey and extremely white, dark purple circles under his eyes were now very common to see daily. He was at the bottom, very bottom, of the weight chart and there was talk from the doctor about taking medical action to stop his weight loss even. Already at the 5th percentile for his age group before all this began, the thought of how much he weighed before Christmas was making me sick.
He began to ONLY eat macaroni and cheese and want nothing else! Which having done some nutritional studies six years back when he was first diagnosed with MSPI, I knew could mean only one thing. That at 2 years old when all doctors and specialists reassured me that all kids outgrew their MSPI, they were wrong! I had learned some time ago that sometimes in certain intolerant or allergic individuals, they can become addicted to or crave the one food they are allergic to. So, my son repeatedly asking for macaroni, ice cream, etc. was a huge warning sign to me. Only, at this point, I would give in because some calories are better than none, right? If anyone has a child like this, we all no, that they will go days without eating if pushed too! I know, he's done it!
Right before Christmas I had resigned myself to the hospital stay I knew was inevitable. I was trying to figure out in my head how I would manage two children, one at home and one there. DW again, a very anxiety ridden child would not handle me being away from him, even for short periods of time. His father and him barely got along, so that would add more stress. JD would not understand what was going on and though I know that there are times he understands what I tell him, I'm not sure he always gets it and this would be one of those times.
Needless to say, I was almost beside myself, crying myself to sleep every night, begging, pleading for some miracle to happen. Every morning I'd wake though and it would all be the same. I was desperate and ready to try anything at this point.
Then a lady whom I've come to have much respect for, made a simple suggestion that would change our whole world. Ida, is a wonderful woman who works for and with Sensory Processing kiddos and their families. She had suggested putting DW on a LIQUID vitamin and probiotic. He already got a gummy vitamin because this was the only kind he could handle so I didn't see how a liquid would matter but, it turns out it would make all the difference in the world and lead to some more changes in our lives that so far, have been truly amazing!
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