Tuesday, December 24, 2013
Meltdown vs Tantrum
Many of you have asked me the difference. I'm no medical professional and I'm basing my knowledge off of my two ASD kiddos. And as anyone who has someone in their family with ASD or is on the spectrum themselves, the saying goes “If you know one person with Autism, you know one person with Autism.” There are so many different diagnoses with this learning disability and it effects everyone differently. This is why they say that.
However... if you know someone who is on the spectrum, you are familiar with the term “meltdown”. What is this, exactly? Well... let me paint a picture for you...
You are in a restaurant. Most of us are familiar with the setting. The dim of the conversations going on in the background, the sound of glasses tinkling, dishes banging, something drops in the kitchen, waitresses asking “What would you like”, people asking to be seated, what the specials are, forks and knives banging on plates, kids being kids, parents yelling at kids, babies crying, and throw in the smell of food for good measure. Now... imagine that you can't shut ANY of that off. Your brain can't focus on just one thing. It takes in ALL of this at the same time.
This is what its like with Autism, only, this is every day in every situation. They can't stop their brains from focusing on EVERYTHING. If you're at your own house, they hear the heat or AC on, they hear each TV on, they hear the plinking of people on laptops or computers, video games going, conversations, the smell of food cooking, the smell of whatever it is you decided to spray in your house to make it smell good, the sounds of the dryer or the washing machine, the shower, the dish washer, the coffee machine. This is their life, 24/7/365.
What's a meltdown? When they can't take it anymore. When all of the sudden everything is just TOO much for them. Or, if they're in a new situation and none of the sounds and smells are familiar. Now they have to add something NEW on top of everything going on in their mind. Their brains snap and they cry, then “stim”, they do everything they can to JUST. QUIET. DOWN...and they can't.
So yeah, if you see that kid in the supermarket crying for no reason and you see the exasperated parent scooting them along, instead of thinking to yourself “Spoiled brat, they just need a good swat on the bottom”, ask if there is anything you can do to help.
Tantrums? When you tell a kid they can't do something or get something they want and they whine to get it or they throw a fit. That's a tantrum. And yeah, my kids do that, too. Just because they're Autistic doesn't mean that they don't go through the same social developmental milestones as every other kid. They just hit them at different points of time in their lives, away from the typical ages they are supposed to hit them. (And let me tell you, when they did hit their “Terrible 2's” that was just an utter joy...*note sarcasm)
As parents who have kids on the spectrum, it's up to us to figure out which is which. It's an exercise in detective work. Every day.
Tantrums? I don't even bother acknowledging the behavior. They throw one, I walk away. They are doing it for attention and I don't give it to them.
Meltdowns? Depends on the kid and the situation. When Pixie goes through a VERY bad one, I just sit next to her, calm. I don't make a sound. I don't touch her. She feeds off of my energy and it calms her down because I am calm. When it's a small one (and if I am able to get to it before it turns into a big one), I sing to her. I sing anything. She focuses on my voice and is able to shut some of her mind off. It helps. (I'm just glad she doesn't critique my crappy singing and isn't picky on the quality.)
For Tiny Man (Lil Monkey), removing him from the situation into another room seems to do the trick. He is auditory defensive so changing the sounds help. He doesn't appreciate the singing, apparently.
Autism has taught me many things. One is patience. The other is to drop the judgmental mentality when out in public. I used to be the one that would roll their eyes and think “I guess swats on the bottom are out of style.”
No... not anymore. I give the mother or the father a knowing look and ask if I can help. Sometimes they're surprised that I recognize the symptoms. Other times they shake their head and usher their kid away to someplace quiet. One time, while putting my two ASD kiddos on the bus, a little boy was going through a VERY bad one.
I signed to him if he could speak. He verbally asked “What's that?” So, in the few minutes it took to get my kids on the bus, he learned a few signs and forgot what got him to meltdown.
Also, he enjoys Itsy Bitsy Spider... even if it is “off key”. =)
Wednesday, October 30, 2013
So. As I mentioned in the last entry, Destructo and I had a late night. When he goes to bed around 3 AM he would often crash until 11 AM. I awoke the next morning to Destructo's godmother coming into our bedroom and telling me not to freak out when I got out of bed, that she was taking Destructo and I out after I saw what was on Facebook.
This, was in my inbox.
The names are of course blocked out, but Red Person also copied Destructo's godmother and the wife of one of our mutual friends. Destructo's godmother is a special education teacher. The second person is a mother who saw the comment the night before. The second person, replied first.
I didn't reply until several hours later, as can be seen by the time stamp. Destructo and I went out with Destructo's godmother, because she's awesome and she knew I was under enough stress as it was. Also, I didn't want to fly off the handle at the jerk, either.
Destructo's godmother stays out of the group conversation. Red person came back with the following, which I didn't dignify with a response, and if I had--it would have been everything I included in my previous blog entry on this topic.
I will admit I am still steaming a bit about it, maybe it's because I expect this person to realize how far their head is up their rear end and apologize to me. On another level, I know that will never happen. Sometime in the next year after this, I became friends with MommaDe, who also knew Red Person, basically due to our overlapping social circles.
On the other hand, I also feel sorry for Red Person. I have no idea what they're doing with their life now, and I mostly don't care. But--I do worry for those in his future. What if there is a special needs child in his future? Let's do a thought experiment. Red Person uses the generic term "issues." And when I've been thinking about this blog this occurred to me: how does it sound when you replace "issues" with a solid diagnosis? Mind you, the whole point of my previous entry was that all signs were pointing to Autism.
NO ONE is going to care about his issues but you and him. NO ONE is going to care about his Autism but you and him. NO ONE is going to care about his Cystic Fibrosis but you and him. NO ONE is going to care about his Diabetes but you and him. NO ONE is going to care about his Down Syndrome but you and him. NO ONE is going to care about his Manic Depression but you and him.
And this, this is what worries me should this person become a parent one day. Because if this is how this person's mind works, I fear for the quality of life of their child should they have a lifelong medical need. Am I over-reacting? I don't know. I'm extrapolating with the information I have, and this is the conclusion I came to.
Monday, September 30, 2013
My kids’ case worker and I see eye to eye. It’s refreshing because I’ve heard some serious horror stories. But nope, I’m blessed… she and I are COOL with each other. She had to pull me aside, before the meeting and tell me that the Child Psychologist (the one I don’t get along with) was going to try and talk me into letting Pixie’s personal teacher go because she had been doing so well.
“She just wants to talk to you about it and get your input…”
Ah…. You are the buffer. I get it. Soften me up. My response “She can talk all she likes…not happening.” She smirked. “You’re one of my favorite parents, “MommaDe”.
And the meeting went underway, sorta. They try and get these meetings in before school starts so the teachers and therapists aren’t taking time away from the other kids. I get and respect that. My kids aren’t the only ones they help during the day and I’m not THAT selfish…
So, the Child Psychologist strolls in 15 minutes late. Mind you, I had to get the meeting started because we were waiting for her. No surprise there. She doesn’t like having to deal with me. Pro Tip: try and pull one over on me or my kids and you don’t want to deal with me, either.
So we’re going through all the teachers and therapists. I had to inwardly chuckle (and feel extremely grateful) that my kids have a staff to help them get through their day. It gets funnier when you realize my daughter’s full title nickname is “PRINCESS SugarPop Prettyfeet, Pixie of the Wild Frontier.” *Giggle* She has a staff… Anyway…
It came time for the Child Psychologist to speak up. The moment she entered the room, btw, and the energy just changed. Thanks to my youngest brother, “Uncle Xerbs”, he had me watch this show call “Lie To Me”. If you’ve ever watched that show, it basically shows you how to read people through their body language. Lemme tell you… it has staved off MANY an argument and has given me a heads up on who is feeding me a line of B.S. It’s just my little “Ace” up my sleeve.
And as soon as she walked in, my kid’s classroom teacher, sits back and starts to fold her arms. Defensive position. I had to hold back a grin. She doesn’t like her! Interesting…
“So, “MommaDe”, I wanted to go over something with you and get your input on a new idea we wanted to try. Since “Pixie” is doing SO well we thought we would take her personal teacher away from her and see how she does. It also frees up the teacher to go to another student. Your thoughts?”
I sat there for a few moments pretending I thought it over. “No.”
There was a pause. I’ve learned that the word “No” doesn’t really have to be explained, ESPECIALLY when it comes to my kids.
Ugh… she’s going to have me break out my inner pitt bull. I don’t WANT to break it out! It’s FRIDAY!! Really, lady? Ugh…
“My daughter is doing well BECAUSE of the teachers and the therapists she has on hand, this INCLUDES her personal one. She has worked VERY hard to get as far as she’s gotten and I WILL NOT take that hard work and toss it away simply because YOU want to save a few bucks. You get a fund from the state based off of how many Special Needs kids you have each year. Dip into the fund and hire a teacher because my child’s teacher isn’t going anywhere.”
You could feel the ripple of energy bounce off of me to her. Everyone else just sat back and watched the battle unfold. I’m a pretty easy going person until you mess with my kids. I was told by HFM, a long time ago, “You have to be your kid’s biggest advocate. If you don’t fight for them, no one else will.”
Yep… gonna break the PG rule here…
I think it’s a shitty thing to do to force this on a parent, btw. We have ENOUGH stress on us, and now we have to be their biggest advocate, too. I shouldn’t HAVE to fight that hard. They see my daughter. They see what her needs are. But noooOOOOooo… you have to go and poke Momma Bear and piss her off on a Friday. Way. To. Go. *Golf clap*
So along with the full laundry list of stuff a mother is to begin with (with just an NT kiddo), then add all the things a Special Needs parent is on top of that…and that’s my life x2 because Tiny Man is a Special Needs kiddo, too.
Bitch, I have about 6 years of sleep deprivation just needing a direction to be unleashed. Do. Not. Trifle with me. K? …… K.
“Oh, “MommaDe”, I didn’t want to get you angry, it was just an idea….”
“I’m not angry. I’m stating that her personal teacher isn’t going anywhere. I’m not signing off on anything that resembles that “idea”.
And that was that.
FTR…. I FRIGGIN HATE having to break out my Inner Pitt Bull. She is nasty. She is mean. She is SUUUUUPER protective of my kids. I don’t like being mean to people. I like laughing. I like being happy. I get ANGRY when those moments are taken from me. (FTW, I know that Pitt Bulls really aren't mean and nasty...but they are super protective and if you cross that line, the business end is no joke.)
*Snort* I almost have to ask “Are you new here?”
To answer it, no… no she’s not. She’s been around since Pixie started the preschool program when she turned 3. Blessed Fortune has decided I've fought with her enough and she is leaving the district this year. (Does a fist pump "YESSSS")
So yes, this was what I had to deal with on Friday. I only had to break out my “Bitch Be Good” Stick once. Not bad. It could have been a LOT worse.
Finding My Happy Place,
Thursday, September 26, 2013
It's an unfortunate, but common occurrence for special needs parents to be unfairly judged by those who consider themselves our peers. In all actuality, they are not peers. We may be in the same age group, maybe from similar economic backgrounds, sub-cultures, groups of friends, whatever. But unless you are a parent--or at the very least, have taken years of college courses and have spent years working in education or pediatrics...you have NO right to judge us.
Here is my experience, the background story. There will be another entry to follow this up; because unlike the antagonist of this blog entry, I want to make sure our readers have all the information before they pass judgement on the one who decided they were qualified enough to judge the parenting of my husband and I.
Between the ages of one and two, Destructo was a terrible, and I mean terrible, sleeper. At the time we were living with my parents and my younger brother. Six people in a one floor, three bedroom condo. The condo was also situated over a row of garages. My husband and I moved in when I was about five months pregnant with Destructo. Our plan had been to stay with them until we got on our feet...it didn't quite happen that way due economics and cost of living and available jobs where my parents lived.
My terrible sleeper. We could not get him on a schedule. Of course, it didn't help that everyone in the house was on a different schedule. My little brother left for work before the sun was up. My father left several hours later. My mom, with her myraid of health issues, was a night owl. My husband was working overnights at a grocery store. And then there was the automatic garage door opener that went off at 7:30 in the morning below our bedroom. And my mother's dog, while sweet, wasn't exactly a quiet dog either.
We even tried the "cry it out" method. Once. He screamed for two hours until he made himself sick. I'll never subject a child to that abuse again.
The only thing that was consistent about Destructo's sleep pattern is that he always went down at three in the morning. Then he'd crash for at least six hours. At this time (Spring and Summer of 2011), he was already involved in Early Intervention and receiving Special Instruction and Speech Therapy. So naturally, if we were having a rough night, I'd kvtech on Facebook about it, because more often or not I'd be playing Facebook games to keep myself awake while Destructo ran laps around my parents living room while Wow Wow Wubbzy played on Nick Junior after midnight.
On May 22, 2011, I posted in my livejournal about it. Here's an excerpt:
And as if I weren't dealing with enough, [Destructo] is slightly developmentally delayed. I'm pretty sure he's on the autistic spectrum, but on the ADD/ADHD/Asperger's Syndrome end of the spectrum. His gross motor skills are fine, he was walking at ten months old. But he does not use language, he does not listen, he does not respond to his name. Everything we thought was first words were just sounds.
We're already involved with Early Intervention, he sees a Special Ed lady twice a week and we're waiting on the speech therapist. He's already showing improvement in certain things. He was evaluated last week for autism, I'll have that report on Tuesday to bring to his doctor (I'd be surprised if he WASN'T on the spectrum).
[Destructo] is also seen by a geneticist (who I have bitched about previously) and more recently a pediatric orthaepedist since his left leg is severely bowed. I politely told the geneticist how I unhappy how things were handled with the Fragile X testing, so this time, the lady explained to me what they were looking for (he got more genetic testing a few weeks ago that I'm pretty sure involved an electron microscope) and why, and I thanked her. Just talk straight to me.
And yes, [Destructo] has already seen a neurologist. First doctor to say my son is normal. XD Seriously though, the neurologist said that he's normal as far as he can tell, doesn't mean he's not ADD/ADHD but I guess we may eventually follow up with him again.
The Early Invention ladies keep praising me for getting on top of things so early, but I am just doing what's best for [Destructo]. I don't want to happen to him what happened to my brother and I...struggling through school, not getting one-on-one attention, my ADD/ADHD/Asperger's is totally not diagnosed and even though my brother's WAS, he was totally screwed over by the school district and dropped out of school.
If I'm still in New York when he's school age, I'm home-schooling him. I can't afford the Montessori school ... (already looked into it) and if [Destructo] is anything like me he will need one-on-one attention to learn, he'll be a visual and not an audio learner, and he will have the attention span of a gnat.
The reason I will be able to be his teacher is because I will understand him, and I will able to keep MY attention, because like all Aspies, I have a narrow range of focus in one subject...and that is my son. :)
Around this time, I'd done some research (like most of us special needs mothers do). I read an article that stated that autistic people either didn't produce enough melatonin to go to sleep at a proper time, or if they did, they produced it at the wrong time. Well, that seemed accurate for Destructo.
This announcement prompted some conversation from the educators on my friends list. I listened to what they had to say and actually felt better about public school. In fact, homeschooling is completely out of my head--Destructo needs way more therapy than I'm even qualified to give.
A week later (May 29), I made this post in my livejournal:
Got the report back from the evaluator for the M-CHAT. He failed five out of six questions he wasn't supposed to fail. This isn't a solid diagnosis but rather we are to follow up with a developmental pediatrician. On the other hand--his normal doctors think he's just a normal 18 month old with a language delay. If he does get a positive autism diagnosis (and just to reiterate, [Destructo] would be on the mild end of the spectrum), we would be eligible for more services through Early Intervention.
On the bright side...[Destructo] is using more words since he started with the Special Instruction teacher. The speech therapist doesn't even start until next week. He is using something that sounds like "ball" for his big red ball, and "okay!" which I think he got from his special instruction teacher...she says it a lot. He is also using "ba ba" for bottle more often even though we don't use bottles anymore. :)
One of the concerns I brought up to the doctor is that [Destructo] is very resistant to trying new foods. He will gag, and if I try and force it and he still doesn't like it, he will make himself sick. Sometimes when I cut up fruit for him, and force a piece in his mouth, he chews and realizes he likes it. But I can't do that with broccoli. I tried giving him a little bit of broccoli twice a day for a week. He wouldn't touch it. Once in a while I can sneak in some potato bites with his chicken and he seemed to like when I cut them smaller last night.
He won't eat his purees anymore and pretty much lives on formula, chicken tenders, Gerber's lil' crunchies (the two flavors he can safely have), and buckwheat pancakes. So his doctor said to ask the speech therapist about oral texture food aversion. I did at our initial meeting, and I'll have to demonstrate it to her next week.
Sometimes I can't help but wonder if [Destructo] thinks that new foods will make him sick. I can't say that I blame him there. :(
I made the appointment for the developmental pediatrician at the beginning of June; they wouldn't be able to see Destructo until the latter half of August, but the appointment was made.
Halfway through June, I made a post on Facebook about a long night with Destructo. You can see it below. Purple is me. Red is a not nice person. Blue is Destructo Daddy. Green and orange are female friends of mine who are also mothers, and yellow is my mother.
And this is where I will leave off...for now. Because wait until you see what I woke up to the next morning.
Monday, September 23, 2013
After a while, he finally looked at me and said "So... are we over the dating thing, yet, or what?"
My eloquent response? "Uh... ok, I guess so."
That was 15 years ago. I haven't looked back. I somehow knew that taking the relationship plunge with him was going to be on a permanent basis. Anyone that can handle my spaztastic dysfunctional life and still be attracted to me, was a keeper.
He's given me 110% in most cases. But that's the key to relationships. It's never 50/50. Some days you're giving more, some days less. He's been emotionally there for me, every time I've needed him. The secret to a lasting relationship? Make sure your emotional baggage matches. Everyone carries a bit with them. The person you build a lasting relationship with, the baggage has to match. If you come in with more or less than your partner, your relationship just becomes a long therapy session or a consistent rescue mission. And really? Who has time for that?
Now, he will give you the story on the first day he saw me. Me? (And I know it's terrible of me) I didn't notice him at all until my senior year in high school, and even then it was a brief conversation. We really didn't start to "hang out" until after graduation. (The events are fuzzy with me.)
We've traveled a bit of the world together, we've laughed more times than I can count, we've cried together...we created life together, our souls grew up together, and we are growing old together. It's been one amazingly crazy roller coaster, but I can't imagine anyone else sitting beside me, riding it with me. He may say that I'm the better half, but I have to disagree.
And if after 15 years, my imperfections and flaws haven't made him want to faceplant a brick wall... well then, I have something pretty special. Here's to many many more, baby. You will always have +1
Taking time out for mush,
Thursday, September 5, 2013
Her wisdom and compassion were a light for many of us in the Autism community, so it's no surprise that many of us are deeply effected by this shocking story.
No judgements here. When you're pushed to the very edge of your emotional limits, your mind goes to unspeakable places. I'm not saying that I would have done the same, but I am saying I understand why her mind went there.
I worry all the time about my kids. Will Pixie and Monkey be able to live on their own? Be able to take care of themselves? Am I going to be taking care of them for the rest of their lives? These are the kinds of thoughts that keep me up at night. I try not to dwell on it because whatever will be, will be, and worrying about something you can't change does no one any bit of good. My kids need me "in the now" to help them. And that's where I *try* to stay.
It doesn't always work. I can't tell you how many times I've cried in my shower because, out of nowhere, the anxiety and stress hits you like a ton of bricks and you whisper "Can I really handle this?"
Doubt and defeat are powerful cancers on the soul. If gone untreated, it will eat away everything you've tried so hard to put up. It eats the best and strongest, eventually...
Awareness. Ask any Autistic parent and they will give you a list of what that means to them and why it's CRUCIAL for our community. It's growing a community together held by compassion and understanding. It's putting tough questions up to the doctors for an answer (that we many never get.) It's driving home the importance of having early intervention in every district so that the child can have the best possible start in life. It's a simple as leaning over to someone who's staring and saying "She/He can't communicate like you can. It's a learning disability."...and on the rare occurrence, (which is growing smaller much to my relief and fear) the light in their eyes sparkling that they finally understand why your child is flapping their hands in public.
There's another side that even us, as Autistic parents sometimes oversee... Awareness is also linked to the parents that have been fighting too long and need someone to lean on once in a while. We need to be aware of our own community members and the internal struggles we ALL face. Be that shoulder, that ear, let them vent. When someone asks "Hey, you ok?" and we turn, give that knowing smile and say "Sure.", knowing that's the wrong answer and knowing that we want to yell and scream and shout 100 different things (some not so nice) without judgement. We don't need to hear what we should be thankful for. We need someone that just "gets it"...and even if you don't, just being that quiet ear. (Hmm... can you tell I've been there before??)
One of the blogs I've read about this, sums it up perfectly. (http://msnnblog.com/2013/09/05/she-is-one-of-us/) For a community that is divided (Anti vacc vs Vacc, meds vs homeopathy), we have to stop fighting. Stop and look around at someone who might be fighting just a little too long or just lost a battle. Different opinions are well and good, but when someone is put at these lengths (feeling there are no more options or alternatives), it's time to drop the ego and pride and reach out. Sometimes we are so used to fighting that we overlook WHO it is we're fighting, just so we can get the fight done and over with.
A house divided...
I am proud to be a part of such a wonderfully diverse and tight knit community. Don't feel like you have to shoulder it alone. If you feel your "light" going out, borrow someone elses for a while until you feel strong enough to relight your own. I may be new to this Autism World, but I'm decent at being leaned on. You have a community at your fingertips. Humans are social creatures and have relied on each other for thousands of years. Don't feel like you have to reinvent the wheel because you don't want to "burden someone else."
Prayers to the family, they're going to need them.
Carrying extra "torches",
Wednesday, September 4, 2013
It’s an odd feeling…
I did well, though. Held tough until I got home and talked to my mom (Nana). I was an emotional wreck all week, though. I had this giant knot in the pit of my stomach. Whether it was psychosomatic or something was tearing through this house, I’m not quite sure. Lil Monkey got sick a bit, too, as did Bokka which leads me to believe it might be a bit of both.
My glitch? I remember what Elementary School was like for me. Kids can be amazingly warm and loving creatures, or they can be heartless cruel individuals. It’s all in the rearing. They’re like sponges, sucking up things that you don’t think they’re picking up on. They. See. Everything. (Keep that in mind when you tell an off color joke around the corner, out of eyeshot of your kid. You may not think they understand or can hear you…they do. Children start to understand words in the womb.)
Not everyone raises their kid with love and understanding and my son has to be at the mercy of whatever animal raises a kid. This is where I get to see if everything I’ve started to instill into my kids, holds out.
Yep. I said it. Animal. Just because you tossed some of your DNA with someone elses doesn’t mean you SHOULD have. There really should be a test on parenting before you start having a kid. The last thing this poor world needs is another angry, emotionally abused, dysfunctional, ill-mannered self-entitled brat entering into it. Yeah. I went there. I SO went there.
I’m gonna let y’all in on a little secret. With the exception of a handful, I generally can’t be around other people’s kids. Why? …. Mostly because of 2 simple words that have been omitted from their vocabulary.
“Please” and “Thank you”.
Is it really so hard to reinforce manners? When I was raised, when we asked for something that we wanted, it was always with a please. And when we were given said item, it was a “thank you” at the end. Manners are the EASIEST thing to teach a child. All it takes is patience, consistency, and repetition. If you, as a parent, can’t provide those three things, don’t be a parent. I’m serious.
Go and sit in the mall and just close your eyes and listen to how children address their parents these days. It makes me inwardly cringe.
Buuuuuut, that’s a tad off subject. I’ll rant about manners another day.
I’m talking about bullies right now, and how they’re started at home. Now, don’t misunderstand me. I have two younger brothers and I understand there is a pecking order that has to happen. I’m not talking about sibling rivalry. I’m talking about a kid going out of his or her way to inflict mental or physical abuse on another living thing.
Yes… I was a victim of a bully. Several, in fact, (still have a scar on my back from one) so I know what my kids are up against. Pixie and Monkey are going to have a hard enough time being a kid on the spectrum. They don’t need someone tossing their weight around on them.
I almost feel sorry for Peanut. Being your sibling’s Champion (until they can take care of themselves) is a big task. I pray to the Great Mother every day to take care of my brood. It’s tough because I can’t be there.
Honestly, I don’t know how Nana did it with the three of us (my two brothers and myself) without being on some kind of prescription med or alcohol.
*Takes in a breath and lets it out slowly*
Oh well… The Hubs is off of work today and we haven’t had a day free to just us, in quite some time. I’m off to watch a day of good movies and relaxing.
Wednesday, August 28, 2013
So the rest of the winter of 2010 passed more or less, without incident for Destructo. He remained on Nutramigen but battled reflux, head to toe eczema, and didn't sleep like a baby should. Regardless, we thought he was still meeting milestones and at his four month well check in April 2010 we got the go-ahead to start him on solids. We started with homemade pureed apples and pears and he did well with them, no issues. He also saw a dermatologist during the first half of April since his skin was so terrible.
One Saturday I was a bridesmaid at Destructo's godmother's wedding. Those few hours I was away from him getting ready and during the ceremony were the longest I'd been away from since he was born! I was quite anxious about it, actually!
The day after my friend's wedding we decided to introduce peas to Destructo. He loved them and ate all four ounces. Two hours later, he began dehydrating again. Back to the ER, and this time I called the pediatrician's office to let them know we were on our way there. One of the nurses in the ER, who remembered our previous visits, was the first person I remember to make the connection that soy and peas were both in the legume family. Since then...no legumes for Destructo.
Fortunately, Destructo did not react as badly to the peas as he did to soy. We did not have to transfer to the children's hospital, and said two nights and three days at the local hospital just for observation and rehydration. The first night we were there, Dr. C came in with a can of Neocate Infant and told me that it was an even more gentle and hypoallergenic formula than the Nutramigen. We started him on it the next day after he kept Pedialyte down. By the next day almost all of his eczema had cleared up. I eventually learned that Nutramigen still contained soy and dairy derivatives. After a few weeks, we noticed his reflux had improved a little too.
In July we finally got to see an allergist, when Destructo was about eight months old. The first and second rounds of bloodwork showed no IgE allergy to soy or peas. "IgE?" you say? "What is IgE"? For anyone who has ever gone to an allergist and gotten blood work or a prick test done, these tests are to test Immunoglobulin E (IgE) levels, and it is type of protein in blood plasma that acts as an antibody to activate allergic reactions. About 50% of patients with allergic disorders have increased IgE levels in their blood serum. People who need
EpiPens for bug bite or peanut allergies have IgE reactions that cause life threatening reactions. Anyway, the allergist had a feeling that Destructo's allergy to soy had something to do with his GI tract so she referred us to a gastroenterologist.
This is when I started obsessing collecting my son's medical records. I was fortunate enough that my son's doctor's did not charge a cent for this.
Sometime between seeing the allergist and gastroenterologist I had been utilizing Dr. Google since waiting was giving me no answer. That was when I discovered FPIES. Then, after getting Destructo's records from the allergist, she had also mentioned it. At this point his normal pediatricians had only diagnosed him with MSPI.
So when we saw gastroenterologist that August, I asked him about FPIES. He told me it was very possible that Destructo had it; however it was a clinical diagnosis; they had to rule out other things and pretty much diagnose it by process of elimination. So aside from his medical history, the GI said the next step was an upper endoscopy. At this point Destructo was only nine months old and since we knew his triggers, he wanted to put it off until he was a little older.
And I learned that FPIES is different than IgE allergies. It is a T-cell mediated allergy. I can't explain it better than that, but this is why the soy and peas did not show up in his allergy blood work or prick tests.
That December, Destructo did have another hospital stay...but only because the stomach flu stomped through our household, saving only my father. So we did stay in the local hospital for three days, his pediatricians admitted him just to be safe and considering his medical history. In fact, the bug hit me while I was in the hospital with Destructo, and at one point Gramma D was downstairs with my brother in the ER who was getting treated with IV fluids. At least they let her come upstairs and visit us in the middle of the night. There were several nurses who remembered our previous visits and were very sweet to us. The day we were discharged Thomas was very energetic, and we took a few walks around the small ward, which was a little tricky given that he was still attached to the IV!
They had to bandage his hand to keep him from pulling the IV out. Also, you can kind of see how big his head was at 13 months old. And...the hospital, had very old drop side metal baby cage hospital beds.
Fast forward to May 2011. I'd been fighting to get insurance coverage for the toddler version of formula (Neocate Junior). I did eventually figure out my way through the red tape. I knew it was covered by law in our state. But during this process, I talked the gastroenterologist into the endoscopy, because if I had a diagnosis it would help with medical necessity. He agreed. May 2, Destructo had his upper endoscopy at the children's hospital, to rule out celiac disease and Eosinophilic esophagitis. He came out of the procedure saying other than a little bit of irritation from his reflux, everything looked perfect. Barring anything unusual coming back from the biopsies, he was certain Destructo had FPIES.
Once we got the insurance coverage for the Neocate Junior, his reflux disappeared over night. Wondering why, I compared labels. The infant version had 6% soy; the toddler version had none. That 6% was not enough to hurt Destructo, but apparently enough to give him reflux.
And it was also around this time that we started Early Invention for Destructo, but that is an entry for another day. :)
Tuesday, August 27, 2013
First, we had to bury my husband’s grandfather. I loved that man. He was from Cajun country and still carried his accent. The moment he found out that I loved to cook, it was an instant bond. He had a great sense of humor. But his pride and joy was his family and every holiday spent with him, he considered a blessing. The holidays just aren’t going to be the same without him.
As much as it sucks for the reason, I was able to see my husband's extended family that I don't get to see very often. I love his family. Their crazy meshes well with mine. It's like I've known them all my life. I was just "meant" to be a part of that family. I also got to meet family members I never have before. And much like the rest of his family, I felt an instant kinship. It made me wish we weren't so spread out. It would make the holidays that much more special, for me.
Family means a lot to me. It was something that was drummed into me as a child. My mother would tell me "Without family, you don't have much." We may be a bucket of crazy in a sandbox of weird, but we're all close and stick together.
So…milestones. Yeah, we had a few. Monkey was able to run through the grass without complaining. Usually, it’s me setting him down on the ground with him, minutes later, running up to me to pick him up. This time, he just played with the grass, his siblings, and was very relaxed outside. Aside from his aversion to the grass, he also is auditory defensive. Outside really kicks up the anxiety for him so when I see him enjoying himself, it’s a rare pleasure. May this be the first of many.
Pixie has been upping her vocabulary. She now sings “Elmo’s World”, among other things. Today, I had to keep her out of the kitchen while I was cutting up the watermelon. She’s such an inquisitive creature, but I was afraid she’d grab at the wrong time and it’d be a trip to the ER to mend whatever wound her curiosity brought on.
So, I took pipe cleaners and used them to keep the gate to the kitchen closed. She looked at me and asked “What’s that?”
I know I’m probably going to get a few head nods…but when your mostly non verbal child comes out with appropriate speech, sometimes it takes a few moments to register “Did that really just happen?” I blinked for a few moments, processing the new sentence she gave me.
I swear, she must think I’m a dolt. Every time she lays out a new phrase or sentence, it takes me a bit to respond.
“Uh… it’s pipe cleaners, Sugar Pop. It’s to keep the gate closed so that you don’t get in the kitchen while Mommy cuts up the watermelon.”
That answer seemed to suffice her, until the makeshift device was placed on the bars. Pixie LOVES puzzles and spends great lengths trying to figure out how things work. I knew this was going to be an uphill battle to keep her hands off of it. For one, it’s soft and fuzzy – one of the things she is drawn to – and another, it’s something for her to figure out.
It took a few stern “No touch!” statements from me and having to walk over the gate to sit her down when she became fixated again.
My grandmother walked into the kitchen and we talked for a few moments. I don’t know how she did it… Pixie managed to get in. It was her way of saying “You can’t keep me out.”
Most parents have to prepare their kids for the world. Not me. I have to prepare the world for my kids…and world, Princess Sugar Pop Prettyfeet, Pixie of the Wild Frontier…she will take the world by storm. You read it here first, folks.
Peanut starts Kindergarten this year. Finally, my NT will start putting his mark on the world. I felt so bad… he was confused as to why his brother and sister were younger and they started school first.
I told him, “I know it happened backwards, sweetheart, but your brother and sister need a little help to get them where you’re going to be.” Whether he understood or not, is another matter. I suspect he did…he’s a bright kid.
And lastly… Pixie got a surprise today. My brother (I will call him Uncle Kryimm on here) is a professional wrestler for an independent circuit, near where I live. I am a VERY proud sister and always thought it was awesome that my brother is a celebrity. Bias aside, they are amazing to watch and I am always entertained when I get to review a match.
Anyway… Uncle Kryimm is part of a tag team and has a manager. They were on the local news station and I had put their news clip on the big screen TV for Peanut to see. (He’s very proud of his uncle, too, and thinks “It’s super cool” that his uncle is a wrestler.)
So, this link (https://www.youtube.com/watch?v=Gt_1x-PVvKg&feature=youtube_gdata_player) was put on the TV and Pixie comes running down the hall just in time to see Uncle Kryimm wrestling in the ring. She. Flipped. Out. (The good kind.) Flapping hands, jumping, giggling, and dancing galore.
If it’s “Pixie Approved”, you can bet it’s either worth a taste (if it’s got to do with food) or worth a look.
And now that it’s night time and my 3 ring circus has been put to sleep, I am off to put my feet up, eat some watermelon, and watch some mindless bad TV.
Your Southern Ringmaster,
Sunday, August 25, 2013
This post is an edited version of events from this old place called Livejournal, which existed before Blogger. Basically updating my point of view to save on typing. It's not easy to type up a long blog when your spectrum kiddo has popped off half the keyboard on your laptop. ;)
At the end of January, 2010, Destructo ended up back in the hospital. On a Monday night, I ran out of the Nutramigen formula he was put on after his first hospital stay and gave him one four ounce bottle of Similac soy, since he didn't have a problem with it when he was two weeks old. I just needed something to hold him over until we could get more Nutramigen.
Within an hour he was throwing up. Couldn't even keep Pedialyte down.
Fearing a repeat of six weeks previous, at two in the morning my mother and I rushed right to the hospital (only one town over, thankfully). The ER there even called our pediatrician, Dr. A, who rushed right there (he was my pediatrician as well). Our pediatricians has been keeping a close eye on Destructo since that terrible time right before Christmas. I remember him asking why I didn't call him first, he could have met us here; I told him I was afraid the night answering service would tell me not to come to the ER and wait until morning like they did last time. He said they wouldn't do that to us again.
At one point in the ER his heart rate shot up to 217 BPM and it took a while to get it down. Also, his bowels emptied to the point where I was sure he was shedding the mucus lining of his intestines, because there was no way so much could come out of a twelve pound, twelve week old baby. Dr. A was adamant dehydration shouldn't cause that, or a reaction to formula. The formula might cause what is happening to him, but it not the cause by itself. The decision was made to transfer Destructo to Westchester again, except we went by ambulance this time since his dehydration wasn't as bad. Also it was windy. I was able to ride in the ambulance.
Our wonderful pediatrician also told the hospital to admit us and start running tests, and not just treat him and send him home. We had to wait several hours in the ER for a bed to open upstairs. Later on we saw the metabolic genetics doctor again, and I already had an appointment a few weeks later anyway. That doctor took me seriously about everything I had to say, and they had a GI doctor come up for a consult.
The GI doctor was an ass (and as I later found out, not even a pediatric GI). He said it's most likely a "bug" even though both bouts of dehydration were brought on by a change in diet. The doctor who makes rounds of the pediatric ward, who has seen him since he was brought into the Westchester ER on Tuesday disagreed with the GI doctor. Her and the metabolic doctor are leaning towards a severe allergic reaction especially given family history but they admit it could be something else; this made me happy because they are looking beyond the obvious answer, unlike the GI doctor.
They talked about getting a cardiologist consult but it never materialized. Our pediatrician was super concerned about the heart rate spike in the ER; it was just way too high for just slight dehydration. There is adult on-set heart disease on my mother's side of the family; but you never know if my son will decide to break the mold.
My mother (I'll call her Gramma D in this blog) spent the the first two nights in the hospital with me, and a few hours after she left my husband showed up. A high school friend also showed up and brought me food.
They took Destructo off his IV fluids for a few hours to see how he did, and he did pretty good. Despite how sick he was, he didn't sleep much. Every time I managed to get him to sleep, the nurses would come in to check his vitals. I spent a lot of time carrying him and walking the halls of the floor, singing the ABC song or Twinkle Twinkle Little Star, or whatever else my sleep deprived mind could manage to remember.
At this point it started to look like Destructo is allergic to soy. Even though he wasn't allergic to it when he was a week old, it could have happened anyway. His enzyme tests came back normal. And we can't test for it until he's older.
So I was told to keep Destructo on the Nutramigen. His godmother picked up two canisters of the powdered Nutramigen, that should help a lot. He had a great appetite in the hospital, but the bowels on the other end took about two weeks to return from a melted milkshake state to normal baby poop.
And even though they think there is nothing wrong with his heart, Destructo was supposed to get an EKG just to be safe because of that crazy spike in the ER at the local hospital. They gave the children's hospital one that was supposedly his, but the pediatrician said it had the wrong name on it. Now, the local hospital, being so tiny doesn't have the best reputation, and because the pediatrician is also from that area, she doesn't trust that they didn't screw up either. The hospital had us stay a few days beyond his improvement just to make sure he really was doing better before discharging us.
Friday, August 23, 2013
In my first entry, I told you all about a gastrointestinal condition Destructo has called FPIES. It's been noted that many autistic people have some GI problems and or allergies, and my little guy doesn't appear to be an exception to that. What follows is how we found that out...
I had a normal pregnancy with Destructo. I had the flu when I was eight weeks pregnant, but my temperature never went above 101F. I lost weight but by my last doctor's visit before he was born I had gained quite a bit. I had a bit of induction because when my labor pains started, apparently I get sciatica, and I was a crazy woman. So on Destructo's due date, I was sent from the OB's office to the hospital, where they hooked me up to Pit, and broke my waters. Destructo was born a little before nine in the evening on a chilly November day.
What I remember most about Destructo being a baby is the crying. And crying. Also, he liked looking at shiny things--mainly, the bowling trophies that were on display behind the couch. He had terrible reflux. He'd sleep on my chest for hours on his belly but as soon as I'd lay him on his back the screaming would start. Unfortunately, I was a total failure at breastfeeding. I managed to pump for eleven days before I couldn't keep up with him anymore. We introduced soy formula before a short time before switching to a dairy based formula; I was on soy when I was a baby due to a dairy allergy. Thomas was on the dairy formula for a few weeks before his skin started to break out from it (which is exactly what happens to me!).
So we switched him back to soy formula when he was five weeks old. That weekend he proceeded to violently dehydrate from both ends, to put it politely. At the time, we weren't sure what was causing it. He'd had his two month shots two days previous. His godmother had been visiting, and she's a teacher. Everyone kept telling me, "Don't worry, babies throw up."
From that Friday to Sunday he couldn't keep anything down, though he did okay on Saturday and kept a little bit down. I brought him to the pediatrician on Sunday. Despite the fact that his temperature was 97.5F, traces of blood in his urine (it was in the front of the diaper and the doctor said he had probably pooped it), and had lost two pounds from the previous well-check on Tuesday, Dr. E sent me home with a hypoallergenic formula.
That night, Destructo nosedived. The diarrhea got worse. I was so sleep deprived I hadn't realized he was going into shock. Monday morning, when my husband and mother woke up, they saw how bad he was and called the doctor. Made an appointment for 11AM, then called back and said we needed to come in earlier since I was thinking of going to the emergency room. We went in at 9AM instead.
I saw a different pediatrician than the day before. Dr. D took one look at him and said he needed to go to the hospital--which was what I'd been wanting to do all weekend; but I have anxiety disorder myself so I kept telling myself I was overreacting. Destructo's soft spot had sunken in, he was gray, and he was extremely lethargic. We were close enough to the hospital that Dr. D said we could probably get to the local hospital faster than it would take for an ambulance to arrive, so that is what we did. Dr. J met us there. Dr. J bypassed the ER and had him admitted right to the children's ward (it was a small hospital). We found out he was borderline septic from being so dehydrated--called Metabolic Acidosis--his blood had become acidic from the dehydration.
The decision was made to transfer him to the local children's hospital. At the time we were living in downstate New York, and he was airlifted by helicopter to Maria Fareri Children's Hospital.
We drove the hour or so there, after stopping at home to pack some clothes for us to stay in the hospital with him; they told us it would take some time to stabilize him before they'd let us in to see him. He was admitted right to the PICU. After we arrived the doctor told us they came very close to putting him on a ventilator, but he was a little fighter. And if it had been another few hours...
Welcome to motherhood, right? Since we didn't know what was causing our little baby boy to dehydrate, we had to play it safe. We had to wear those sterile paper gowns and masks. They did a spinal tap to rule out meningitis. Cultures and blood tests all over the place. They even had to put an IV in a vein in his head because he was barely six weeks old and so dehydrated that they couldn't get any of the other veins. He also an ultrasound, though I can't quite remember why. He was also hooked up to heart monitors.
That night, he smiled for the first time. Our Christmas that year was being able to bring Destructo home from the hospital.
When we were discharged, Destructo's insane dehydration was chalked up to a virus. But that was before the second hospital stay...which I will blog about tomorrow!
~High Functioning Mommy
Tuesday, August 20, 2013
I am the other Mommy on this blog. I call myself High Functioning Mommy because I believe myself to be one of the under-diagnosed. I scored a 185 out of 200 on the Autism Quotient Test but I'll leave my dissection of that for another post. I'm 32 years old with two children, Destructo is my almost-four-year-old son and Jellybean is my five-month-old daughter. Also, I am an uncaffeinated Autism mother.
For now I will call my husband Grumpy Booth until he gives me another nickname. Ever watch the show Bones? Watching Brennan and Seely is like watching my husband and I. The normal emotional person versus the literal minded nerd. They misinterpret each other, they fight, they make up. But they love each other to death. When we first met, we bonded over Star Wars. Spent the next two weeks apart from each other. I was convinced I was going to marry him after that first day.
Destructo will be four this winter, and was diagnosed with Autism when he 21 months old. I believe he was autistic from birth; he is very typical of autistic children who have sensory processing issues and gastrointestinal problems. He has a condition called Food Protein Induced Enterocolitis Syndrome. I'm not going to get into it here, you can always check out the International Association for Food Protein Enterocolitis website for details, but suffice to say my son cannot have dairy or soy. Add to this Destructo's severe texture defensiveness and we have a little boy who only eats five foods. He is on a prescription amino-acid based formula to get the healthy calories he needs.
Food allergies aside, Destructo is speech delayed but appears to be academically ahead for his age. By the time he was two, he could recite the entire alphabet and count to ten. By the time he was three he was able to count to 20, count backwards from 15, and spell his name. He can't hold a conversation yet but he is in an amazing preschool program where he's made great progress in the past year. He receives physical, occupational, speech, and feeding therapy at school. I believe his speech development is around that of a two year old, because he will repeat anything he hears. Spontaneous speech has been improving very well over the past few months. He can even read a few words, his favorites being "surprise" and "stop" and he even uses them in context. My little Destructo is tall like Daddy and looks like Mommy.
Jellybean was born in just before spring. She looks just like her Daddy. She is the reason that this High Functioning Mommy is decaf as she's never had a drop of formula. So far, she appears to be a normal baby...which is a new experience for me! Jellybean's ability to sleep through the night was the first thing that confused me. Apparently babies DO sleep. I do find myself actually being able to enjoy her babyhood...I wish I could remember more of her big brother's but I was extremely sleep deprieved, and I still feel guilty about it. Anyway, I just know Jellybean and Destructo will have plenty to teach each other!
Right now we don't have any furry family members, hopefully that will change in the future!
So, that's us. And since it's taken me about four hours to type of this post between Destructo, Jellybean, and an overheating laptop with missing keys (courtesy of Destructo), Live Long and Prosper!
High Functioning Mommy
It shouldn't be this difficult to find a pediatric dentist. Really.
Peanut has lost his 4th tooth. He has is two bottom ones in already and the two tops are now missing. He lost his first one quite a while ago and nothing's popped through, yet. We want to make sure that everything is growing the way it should, before he starts school, ideally. If we can't get an appointment until late September or October, I'm not going to stress about it. Regardless, he needs to start getting used to going.
I decided that I would try that 1800Dentist number. I would explain that I'd need someone who also worked with special needs kids as Pixie and Monkey would be going sooner or later. Might as well get one doc that kills every bird with one stone. They gotta exist...right?
I sighed and checked the fridge to make sure my wine was chilling on the door. *Open* Yup, we're good.
I picked up the phone and dialed. I got a lovely woman on the phone. She was awesome and really made me feel like this process wasn't going to be as painful as I thought. I gave her the information she requested and when I gave her my insurance info, she stopped me and sighed. (Never a good sign.)
“I'm sorry. Aetna doesn't work with our referral service. You're going to have to call their customer service line and talk to someone on the phone to find one in your area.”
It was my turn to sigh. I replied, “I was hoping that wasn't going to happen. Getting someone on the phone, from there... I have a better chance of seeing God.”
She laughed. What a pity. I really liked her.
“Well, why don't you see if you can find a directory on their website.”, she offered.
Not a bad idea. I won't have to deal with their $#!^^% customer service. Fair enough. I said thanks for the help (because she really was helpful) and hopped on my laptop to further my search.
I should have known better. If their customer service is crappy, their website was probably going to be too. Yep. Totally. I needed a doctorate just to navigate the &!^(#.
I will say that their online booking is a neat idea. You don't have to talk to anyone. You find a doctor in your area, click on their name, and you are given their schedule where you can book your appointment right there. They don't offer any phone numbers to make sure that they've gotten it... but hey, baby steps, right??!
I take a name I found and put it through Google to see about getting a number. AHA! Score! I grabbed my phone and dialed. After the 5th ring, I got someone on the phone and proceeded to tell her my story and what I needed. I figured that even if that particular dentist couldn't help me, maybe they knew someone or they could refer to someone who could.
When I got to the words “Pediatric Dentist”, she stopped me and proceeded to talk over me. I hate that. Rudeness is probably one of my biggest pet peeves. It doesn't cost anyone anything to have a bit of manners. Being raised down south taught me a few and also taught me that it can be done, so when someone is rude to me, there's this automatic eye twitch that starts...
She mentioned something about not being able to help me because they no longer took in child patients. Ok... not a problem. But that was only half of the reason why I was calling her.
I said “Ma'am, if you would please listen to what I have to say and then reply, you would be able to give me the information I'm looking for.”
Apparently, that didn't float her skirt. Instead, it got her frillies in a wad.
“You need to go to your insurance provider's website and look up what you need...”
“Yes, ma'am, I know. I did that and that's how I was able to contact you. I went through their website. You were the first dentist that was closest to me. I understand that you don't work with children anymore, but maybe you know someone who....”
“Then you need to call your insurance provider's customer service line. I'm sorry, I can't help you.”
… *growls* ….
Really?...seriously? You couldn't take 5 minutes out of your day to not only LISTEN to what I'm trying to tell you, but point me into a direction or even give me a frakkin' phone number? I'm SO sorry that I am taking you out of your SUUUUPER busy day that a simple phone number is too much for you to do.
(Anyone who knows me personally can attest to the fact that I'm being extremely nice right now. I've got a rather unique grasp of adult language and find myself growing more creative with it every time I have to deal with rude prats or my insurance company.)
“Yeah. Thanks for the help.”, I said and hung up. I went to the fridge and opened up the door again. I looked down and patted the bottle waiting patiently for me. “All in due time, my darling.”
I sighed, grabbed my phone and a note pad, and mentally prepared myself to calling the insurance company.
Aetna has to be one of the worst insurance companies I have ever dealt with. I am CONSTANTLY having to argue with them on something. I swear, if they could argue about the color of the sky, they would. And I know damned well they have my name on some kind of list. They see my number and they hand me off to the newbie. Poor kid. Their turnaround must be record breaking.
The first phone call, naturally, didn't turn out so well. (Heh, why should it?) After going through their ridiculous automated system, giving a retina scan, a blood sample, a hair sample, showing my genealogy, and various smoke signals, I was placed on call only to wait 30 minutes and then get hung up on.
*looks at the fridge*
I called again and went through to their “Health Concierge” service, whateverTF that is. I spoke to some guy named Aaron. Cool people. I've never dealt with him before. Either he's new or he was the unlucky one that just happened to answer my call.
I explained calmly (and probably sounded exhausted in the process) my plight and what I've had to deal with over the last two hours. After I was done, he mentioned that he had a 6yr old. Awesomesauce. He *might* understand.
When I told him about Pixie and Monkey and said that I needed a Special Needs Pediatric Dentist, I could hear him faintly sigh.
No,no,no!!!! No sighing! We were doing so good....!
“I'm sorry “MommaDe”. I don't want to have to give you more bad news, but you're going to have to get a Primary Care Dentist before you can get a Pediatric one because they are considered specialists.
What? Seriously? I almost laughed at this point. They need specialists to deal with kids. HA! ...whatever...
My family (Mom and Grandmother) had been going to a particular dentist for years and when I was a teenager, I remember spending an entire summer in his chair because the hot mess that was my mouth.
Then Aaron proceeded to tell me that most PC dentists don't take a child so young and that I might have a problem finding one of those. I prayed, hoping my family's dentist was in network.
No. Of course not. Why would he be? That'd be easy. I swear Aetna either means “No” or “Difficult” in another language.
So... I'm no better off than when I started. Only now, I have got a stress headache and I'm down a half a bottle of wine. WOO! It's amazing I'm not on prescription meds.
Keeping It Real,
Monday, August 19, 2013
MommaDe - That's me. H.B.I.C. as they say. I am currently 34, been married to my husband for 8 years (although been together for 15 years) and have 3 beautiful children. I also live with my grandmother, my mother, and two dogs. I was raised in VA so a lot of what I type might sound like it has a southern twang. I enjoy reading, writing, music, and when I have the time, video games.
The Hubs - My rock, my solace, my logic. He brings to the table everything I'm not. We compliment each other very well and have gotten to the point where I don't need to say much. He just "gets" me. He is an incredible husband, and just an outstanding father. They truly broke the mold when they made him. I am extremely blessed.
Peanut (AKA "Bubs") - He is my oldest and my "miracle" child. I was 6 1/2 months pregnant with him before I realized I was pregnant. He is 5 years old and my NT. Perfect and intelligent, empathic and giving... Teen years are just going to be OH so much fun with him, as I am not naive enough to think he will stay that way. I just have to remind myself of when he was this small. He is always available to give me a hug. He provides me with emotional strength. There will never be another like him. He has a very rare gift that when he talks, people WANT to listen. (Not just listen to a little kid to be nice...but really WANT to.) I hope he takes that gift and does something with it, someday.
SugarPop Prettyfeet (AKA Pixie) - She is currently 4 years old and I lovingly refer to her as Pixie. Her "happy place" is running barefoot in the grass, the wind in her hair, chasing butterflies and bubbles, while causing humorous mischief. ...a Pixie... She loves to eat bacon and oreos. She also loves music and that's how I get through to her. I "sing" everything to her. She was diagnosed with PDD NOS when she was almost 3. She received Early Intervention through the state and is now in a developmental preschool to get her the help she needs. She is partially verbal. She talks when she wants to, which is about 25% of the time. The other 75% I have to play detective to what she needs and wants. She is remarkable, though. She doesn't let anything slow her down. If she can't figure out how to ask for it or ask help with it, she figures out how to do it herself. Such a tenacious creature. I am constantly awed by her.
Lil Monkey (AKA Tiny Man, Little Man, or just Monkey) - It's funny how some people just "fit" their nicknames. And he does...completely. Right down to the sounds he makes. He is my youngest child, coming in at 3 years old. Yep, you read that right. I have "Irish Triplets". He loves to climb, loves to eat bananas, and will squeak when you tickle him (which he just adores). Yep. Monkey. He has SPD (Sensory Processing Disorder). He is mostly non verbal, but we're working on that. He can say the important stuff right now, like "Momma", "Daddy", "Cookie", and "I want more." He also knows sign language that was carried over from his two older siblings (taught in the home). So at least I have a way to communicate with him and some of my sanity is kept. He keeps me laughing all day. I love his sense of humor.
Nana - My mom and my soundboard for everything "mother" related. Some people are just born to be mothers and she is one of them. She taught me everything I know about raising kids, cooking, and loving myself. I wouldn't be half of the adult I am without her.
Bokka - My grandmother. We live in her house (that's been in our family for almost 50 years now) and we moved in to help her take care of the place since she's getting too old to do it herself. She was diagnosed with colon cancer 2 years ago and has since kicked the crap out of it. Bokka is a word I came up with. When I was a kid, they tried to get me to say "grandma" and "Bokka" came out. It stuck and now my kids call her that, too. She wears the name like a badge of honor. I love that woman. She is strong willed, stubborn, and the epitome of what a "lady" should be. Adult conversations make her blush and I just think that's delicious.
Meister - He is our near 200lb English Mastiff and my children's "Champion". Ain't no one gettin' through that door that isn't supposed to be here and I don't envy the person who tries. His business end is no joke. But he is extremely gentle with my kids and lets them crawl all over him. Such a loving mushball. I love the big lug.
Loki - She is our 75lb pittie mix. She's such a happy little loaf... Initially, my brother was fostering her as she was an extreme emergency case. (Mom and rest of fam burned up in a house fire.) She had to be bottlefed for the first couple of weeks. The vet didn't think she'd make it. Meister took a strong liking to her and we didn't have the heart to give her up. She is the "sentinel" of the house, sounding the "Alarm Bark" when things are going awry. Again... I don't envy the person trying to break in this house. She's certainly won me over and has earned her seat in my house. The only thing "vicious" about her, with my kids, is the licking she gives after dinner to help "clean up".
Well, there you have it. That's my household and all the chaos it brings. No two days are alike and oddly enough, I love it that way.
Holdin' down the fort,