This blog is about my son and our journey of ADHD, OCD, SPD, and PDD. Everyday brings a new challenge or obstacle...but this Mama isn't giving up so easily!
CHD or Congenital Heart Defects effects 1 in 100 Newborns. This week starting today through February 14th is the awareness week for CHD. I personally do not know of anyone or is anyone effected by this in my family.
They say the full moon is coming tonight and it is the "Full Wolf Moon"! Everybody run and take shelter! Mwahahahaha!!!
Full Moon Calendar 2013
January 26th
Full Wolf Moon
11:38 pm
February 25th
Full Snow Moon
3:26 pm
March 27th
Full Worm Moon
5:27 am
April 25th
Full Pink Moon
3:57 pm
May 25th
Full Flower Moon
12:25 am
June 23rd
Full Strawberry Moon
7:32 am
July 22nd
Full Thunder Moon
2:16 pm
August 20th
Full Sturgeon Moon
9:45 pm
September 19th
Full Harvest Moon
7:13 am
October 18th
Full Hunter's Moon
7:38 pm
November 17th
Full Beaver Moon
10:16 am
December 17th
Full Cold Moon
4:28 am
Seriously, I can sense a full moon coming and going....more frequent crazy calls at work, more hospital patients, more babies being born. On the home front with a quirky child, yeah let's just sing "The Quirks Come Out At Night and Day" to the tune of "The Freaks Come Out at Night"
So, I guess now you want my flashy lyrics? Just remember this is all for fun and my ode to a full moon night!
The Quirks Come Out at Night By Jen
[Chorus] 2X
The quirks come out at night and day
The quirks come out at night and day
The quirks come out at night and day
(The quirks come out)
The quirks come out at night and day
Quirks are always there
And it ain't till 3 till the party really starts
And I always am awake
Right before the fun was about to begin
Rows of toys lined up inside and out
Just one reason to like the Melatonin
But it doesn't always work
You can always find the quirks here
[Chorus] 2X
Now when the quirks come out at night
They like to dump out all our toys
They rip paper and throw it on the floor
Real tiny pieces and baby powder too
All kinds of toiletries in their hair
And you can just about find a quirk anywhere
But then again, you think you have seen it all
But you never know until the quirk comes out on a full moon night, 'cause
[Chorus]2X
Now the boy is jumpin', the room is a mess
And when the quirks like this, I'm ready for some wine
But before I could bust a rhyme on the mic
Quirks are now dumping milk
Quirks come in many ways
But I wish they would hibernate tonight
They do it under the table, this is not just some fable
But when multiple quirks come out at night
You can always tell it's a full moon night
And you may not sleep for days
And they don't walk, Oh No!, They run!
And nine times out of ten they drive you nuts
But take my advice, you will survive
Wow! The quirks are so alive!
So if you wanna live a nice quiet life
Do yourself a favor and buy some ear plugs, 'cause
[Chorus] 2X
Yes, folks, true story. Thank God for coffee and caffeine! Maybe I will get brave and record my song some day! Hope this little tune makes you smile through the quirks! Remember, you are strong and you will get through this too. Sending all my "special" parents lots of love and hugs....
Check out my Facebook page, My Quirky Son, who knows you might get to hear some moon songs!
Since the fall of 2011 and actually, now that I think of it, even longer since Super E was about 18 months old, I noticed there were some quirks. Back then, I just thought, "Oh! It's nothing really. He will grow out of this or that...not my child." I let people influence that thought in the beginning.
Something inside of me changed. I think the "Big Mama Bear" gene came out! You don't tell me that there is nothing wrong with my child and make me feel like I am crazy! I am by no means a loud person or someone that "grabs the bull by the horns" and go off on someone. Maybe a little when I was younger. Now that I am in my 30's, I have a quiet strength (the most dangerous kind). I tend to people watch. Constantly looking at their actions and reactions. Most often peeling myself to the wall, hiding or kind of lurking (Creepy? I know, right?)
I've been pushing for a more definitive diagnosis. Disruptive Behavior Disorder is not the right diagnosis. It didn't sit right. I don't know how I knew, but I KNEW! I honestly feel that the previous doctors really just did not want to be bothered with my child. I had the feeling from them that he wasn't severe enough to warrant their time. Supposed to be a great place for children...maybe for some.
In retrospect, I think I was more prepared for the new doctor. I gathered evidence, made notes, took video...SuperE has a medical binder now! Perhaps, if I had been better prepared, the results would have been different. I believe that God sends us on a path and sometimes we make the wrong turns. I made a wrong turn. However, I continued to pray, to fight, to persevere...
Don't give up. We, as parents, must step up and take action. Even if your child is "normal", you still need to fight for you kids. High school parents in our school district need to fight for bus service. I say keep fighting. You can't make change if you don't speak up!
Official diagnoses: ADHD, OCD, SPD, speech/language delay and the newest, PDD-NOS..so, now what?
This Mom is going to fight not only for her child, but I am going to fight like crazy for your child! I am going to become an advocate. I am going to help other parents find the resources, the help, and the support that they need.
I WILL NOT GIVE UP! I am not going to sit down and cry. I am not letting the enemy win this time! I am going to get up off my behind and DO SOMETHING...just like my Brownies' journey...IT'S MY WORLD AND I AM CHANGING IT!
Yesterday, being in a mood of silliness, I decided that if my Facebook page "My Quirky Son" gets 100 Likes that I would post a video of me singing Bon Jovi! I chose Livin' On A Prayer. It was so much fun!
It is so important sometimes to just let loose and be silly. At first, I was a little nervous and scared that I would get nothing but negativity. My daughter was super excited about helping me! KK was a little nervous too and asked me why I would want to do something like this? I told her because it's okay to be silly and it's okay to be different! She says, "Like how SuperE is sometimes weird about things?" I said, "Yep, that's exactly right!"
I think about my days of growing up and how we had a program called "Everybody Counts". I haven't really seen that in our schools now. Although, I was told it existed but some years it didn't because there just wasn't enough volunteers. More importantly, I remember my Mom explaining special needs to me. If she saw me staring, she would walk me over to the "different" person and she would just ask them about their disability. Most people were always willing to share their story with us. The woman had a knack for charming people. Mom had a best friend who's son was handicapped and he lived in a special home. We would go and visit him...my favorite memory is when one of the residents sang to us..."White Lightning"!
My point being is that we as parents of special kids need to encourage others to speak up and speak out about their child's differences. We need to educate our "normal" children on how to treat others that might be different. My biggest dream would be to see people actually being accepting of someone who is different. Granted, there are more and more people who are sympathetic to kids with special needs that are apparent. And there even some, who are sympathetic when you are at the grocery store and your child is literally crawling out of the cart where it raises up (and does it repeatedly through the store) so you can push it into another cart when putting said cart away. What is hard, is when your child does not have an apparent problem and most will think that it is just a lack of discipline. Or when your child gets so overwhelmed from the lights, the noise, or simply just somebody accidentally bumping into your child that causes a whole slew of responses from spinning, to humming, to running and hiding, or to yell really loud something quite inappropriate.
So, next time you see me out or if you see someone else out. Just ask us what is going on with our kid, don't judge and just listen. Please, please do not give me a look after I tell you about his problems and say, "Oh! I am so sorry!" I don't want pity. I only want some understanding.
To people who know me in real life, please don't tell me things like "Oh! He's just a boy. He will come around." or "Your child doesn't have a problem." or "Are you sure that he has that problem?"! This is my child and these things are happening. Just understand why I might not always want to go places with you with my child. Understand, that when I say something is going to bother him and not believe me. I know my child best and I know what I see every day. When I try to explain a certain behavior, don't say things like, "Well, he didn't have that problem a few months ago." These things honestly just really irritate me because I don't always know what is going to bother him. Some days, weeks, or months at a time these behaviors continue without any warning. I don't always understand what makes him do something or what makes him blurt out something inappropriate. I can't always make him stop doing something annoying like spinning right smack in the middle of a crowded place or humming loudly or saying the same thing over and over again. It just happens. But I can tell you that he is smart, kind, funny, and so sweet.
Yes, our children are superheroes. The world through their eyes is an amazing journey! I am blessed to have a special guy in my life. Yes, there are times when I ask God, "Why?" Just that one simple question. God gave me my special superhero so that I could see the world in a different view. You see, I am a glass is half empty type of person. Before I realized what God had in store for me, I was miserable.
I want each and everyone one of you to know that someone is here that cares about you. I care about you. Oh yes, I am going there...God loves you too!
This blog and the "My Quirky Son" Facebook page are meant for you to share in your victories and in your heartaches. More than anything else, I want you to know that you are not alone. I felt this way in the beginning. I was lost, lonely, confused, and angry. Knowing that there are other parents in this world that go through similar experiences has eased those awful feelings. Thank you fellow bloggers and Facebookers! My vision is for this blog and FB page to be a valuable resource for those that feel like they have reached the end. I want them to know that it's not the end, that life is just more enhanced by having a special child.
The frustration of doctors that doubted me was one of the biggest reasons I got fed up and felt that my voice needed to heard. Who feels that one? I am sure there are many!
As 2012 comes to an end and we begin with 2013, I am revisiting this past year. So many things have happened with Eli's progress. He is talking more, he is socializing more, he has less tantrums, he is potty trained, and me, his Mommy, has learned what patience really means. At the time of all of the negative events, I thought that I would not be seeing any blessings over the past year. However, the blessings have come in many forms: Eli's teachers, his babysitters, my family, my friends, my church (especially the children's pastor and the wonderful Sunday school teachers.), and most importantly, (Here I go again...) God! Just a few days ago as I was reading different blog posts about everything people have learned or their triumphs, I thought, "This past year sucked and their wasn't any blessings." I was wrong. Eli has made some progress!
So, all you special parents, don't give up, ever! Keep the faith. Your superhero will make progress. You can help them succeed and you can be their voice!
Determination: Deciding it's worth it to finish what you started!
Happy New Year!
Blessings and Much Love,
<3 Jen
P.S.
Thank you for your sermon today SF! You truly touched my heart and your words helped me to remain determined!
I think this says it all...I started writing because I needed a way to vent, I needed a way to get my voice out into the world, and I need to be the best advocate for my children. Fortunately, I live in a great school district and I haven't had to push too hard, yet. A teacher thanked me for doing all I do for my son. I had to stop and think about that for a minute...you mean to tell me there are Mom's that don't support their children, quirky or normal?
Maybe I don't get it because my Mom was my advocate. There were many times she stormed into the school just knowing that the administration had to just listen. One particular time, she confronted my gym teacher. The gym teacher used to pick on me because I was fat kid who couldn't do a cartwheel. I didn't like the sensation of flipping over and being upside down. She left a legacy of many tirades right into the superintendent's office WITHOUT an appointment. I was a lucky kid. My Mom left this world March, 2011. She had cancer. I miss her laugh, her unconditional love, her support, her spunk...I just miss her. Before she passed, she and I had a conversation about life, children, my brothers, my Dad, her wishes...everything. She told me to not give up on my husband. She also told me that my son was special and I really needed to keep pursuing a diagnosis. So, here I am, not giving up.
This is my most favorite picture of my Mom. Young, cancer free, and smiling.
I posted this to my Facebook page last night and felt like I should share it here as well. I wish I could just look at my co-workers and tell them what I wrote last night. That while you are all laughing and having a great time, I am struggling to even keep up with the conversation. Instead, I just sit there with a stupid grin on my face to hide my anxiety of being in a social situation.
I have good friends but only a few. That's okay with me because it is much easier to have conversations with them one on one. I hope my kids can deal with their social anxieties better than I have. I hope I am strong enough to show them that it's okay to be different. I hope that they grow into successful functioning adults.
I've been sitting here this morning reading the news. I still can't read or hear about the Newtown, CT tragedy without crying. I can't watch my kids sleep without completely losing it. My heart is so broken for these people, for the state of this country, and even seeing a police presence at my children's school. I am glad to see they are being cautious. Are they going to continue to patrol our schools in our school district once all the newness of this tragedy wears off? or Are we going to go back to a humdrum life and once again just let Mom's like me drop her son off at the Headstart/Preschool class without signing in and getting a visitor's badge? The school secretaries in the past have always just shooed my on with annoyance!
Here is the FB post:
A guy I went to school with posted this on his FB page and I totally get what he is saying. I was a sociable kid and had friends but I was dying inside with anxiety so bad that some days I would go home just sobbing hysterically. None of my close friends ever knew this. Some will find it hard to believe that the girl with the big mouth felt this way inside. I still have issues as an adult with social situations. I am socially awkward. For example, tonight at my work's Christmas dinner I sat there pretending to follow the conversation but I was lost and even said things that didn't follow along with the conversation. After that point, I sat there in silence and once again lonely and miserable. It hurts sometimes when I can't get what I want to say to come out the right way. So, I write. Writing is the only outlet that saves me. I think back to the old days and even now as an adult, it is therapeutic. Read below:
Addendum to the school shooting thing: while mental health is the main driving factor behind things like this, there's one potential underlying cause that I doubt most people realize. That cause is that, while there is training and help available starting early on for most subjects, there is none, ever, for how to interact socially with other human beings in an acceptable manner. For some people - hi, I'm one of them - that is the single most frustrating, complex, arcane, incomprehensible thing on the face of the planet, bar none. Calculus IV is cake compared to holding a simple conversation with someone we do not know. It took years - well past my teens - to pick up the ability to converse with people, and most of you can attest I'm still not exactly gangbusters at it. It's seriously draining, and incredibly freaking hard. Talking, for me, is like a 5-dimensional chess match where I'm blindfolded and using only pawns while the other person has only queens and gets five moves to my one.
Most of you don't think that. Most of you had a knack for this sort of thing, and/or picked it up very early on in life, and at some point decided there was just something wrong with those of us who didn't take to it very quickly. We tended to be laughed at, picked on, and so forth any time we bothered to attempt to communicate, and so we stopped trying and started working on being left alone and ignored, driving people away if we felt we had to. None of that would have been necessary if there had been somewhere to pick up on some social skills without being ridiculed for not simply having them at the level everyone else did.
There is currently one place where this sort of thing can be trained, and that is via therapists - non-judgmental listeners who can point out where we go wrong in conversations and how we can correct it. Of course, that carries a stigma, and isn't readily available. Math tutors? Sure. History? English? Not a problem. Dealing with others? Nope, just label that kid a weirdo and shove them in the corner, or call them a late bloomer or some other BS.
You want fewer people who snap and want to kill everyone in the world? Give the social misfits a bit of a boost. You might start cutting off some of these neuroses and complexes before they get started.
