Ignorance

This post is just something weighing on my mind and just need to get this out. Awhile back, I ran across a post that was making fun of me...it hurt, it cut deep but I did forgive them. Then tonight I run across another post that was made a long time ago that hurt, that just embarrassed me, that made me angry. You can make a comment about me but when you make a comment about my child, the gloves come off. 

I am tired of your ignorance. I pray that God does not bless you with a child that has problems. You won't make it because you are not strong enough. But then again, maybe you need to experience life this way and then you would shut your mouth.

How dare you speak about a situation that you have no knowledge of the daily struggle. There are people with children that are more severe than my kids. My kids' problems are not just another behavior problem. Their problems are real and their problems suck. It makes my life miserable and it causes major strain on the whole family. I don't need your negativity and know-it-all attitude in my life. (please don't get me wrong, I love my kids and I wouldn't change one thing, really)

My child was having a reaction to a medication that caused them to have no control over their actions. Did you know that my child almost failed school several times because of the problem? Did you know that I lay awake at night crying over the fact that my child might never be like other kids? Did you know that when my child started hitting me and kicking me, I wanted to give up on life right then? Did you know that when you made the comment, "Oh my God! Get that kid out of here, how rude to let your kid scream and yell here while I am eating my dinner!", that perhaps that Mom was trying to calm her child down with all that she had but she couldn't because the child could not control their outburst? Heartbreaking to us Mom's that as hard as we try to help our kids fit in, that because of comments like yours, my 5 year old believes he is a failure. 

You should think before you speak. What you say does have an impact on someone else's life. Jesus showed everyone love. I know it is hard to accept what you don't understand. It's hard for me some days to understand why at 5 minutes before I have to leave for work, he or she has to go into full meltdown throwing things at me, kicking me, punching me, pinching me, telling me how much they hate me...yeah, my life is so wonderful on days like that...and no, a woman or man who has a job should not be punished because their child has problems with controlling their thoughts and actions. Bosses should show empathy and compassion to these type of people as they are going to probably be your most loyal employee and hardworking too. What they handle at work is nothing compared to when they are at home taking care of their child. 

Well, young something that has no idea about what life is really about, I am praying for you. I am praying that your ignorance stops and that if someday you have a child, and if your lucky enough to be blessed with a special kid like mine, that you don't struggle like I've had to...I don't wish this life on anyone. I will pray for you then too but perhaps with a little grin (I am human and a Mama Bear). Until you walk a even a tiny little step in my shoes, I would appreciate it if you would keep your condescending comments to yourself, not on Facebook, not on Twitter, not whispered behind my back...just tuck it into your little brain and remember that us parents who are #raisingextraspecialkids (shout out to one of my favorite peeps) are much stronger than you will ever be. Don't mess with us.

Victories...Big or Small

I always seem to take the small victories for granted when it comes to both my children. Victories big or small are so very important when your child has a developmental delay, learning disability, etc. Every single one counts!

KK is going into 5th grade mostly A student, super smart...she has come a long way. I didn't send her to preschool because silly me didn't think it was necessary. Boy, was I wrong! I found out when she started Kindergarten that 95% of the kids in her class went to preschool. It seemed as if they were all leaps and bounds ahead of my child. Then 3rd quarter of Kindergarten came and she was still not reading, she still didn't recognize letters or sounds. She was waaaayyyy behind! I remember thinking to myself that I was such a failure as a Mom because I didn't know what was going on with my child and I didn't send her to preschool.

Then it hit me like a ton of bricks one day: My daughter has learning problems/struggles and I think she has ADD. She just wasn't learning anything, not retaining any information. I figured it out because I started asking questions to her teachers, to my Mom (My Mom babysat a lot of kids with lots of problems. By far the best expert I could have asked. No doctor degree but she had the highest degree or 6th sense when it came to kids and knowing they have problems.), my sister in law "D" who has a teaching degree but also knows a lot about kid stuff, and thankfully, our school has a wonderful psychologist that also helped. Last but not least, a pediatrician that is willing to listen and not think you are crazy.

I made the appointment with her pediatrician. We didn't get answers that first visit and instead we got a whole bunch more paperwork to fill out. I had to have the teacher do this as well as myself and her Dad, the babysitter, and even my Mom. At first, my husband didn't think there was any problem but eventually he understood. Once all the information was gathered it was time for the next appointment with the pediatrician. He decided that she has ADD. With KK, there were no major behavior problems besides the usual kid stuff. She just couldn't quiet her mind long enough to concentrate. I finally decided that she should be put on medicine with reluctance from my husband. He is not a big fan of medicating. But as I said before, he eventually came around and decided that it was good thing for our daughter. The doctor started her on Focalin XR 10 mg and we increased the dose gradually. I only gave the medicine to her during the school year and only during the week. IT WORKED! She started to read not to the level she should have been.

There was much help in getting her to that point. Great teacher that understood what she needed. And we also enrolled her in a program with KinderCare. They had an enrichment program that she went to 2 or 3 times per week for about 2 hours. My sitter was able and willing to pick her up from Kindergarten and take her there for us and pick her up.

KK got promoted to 1st grade! She almost didn't get to move on to the next grade level. The only reason they decided she should move to the next grade was because they had teachers that had just gotten some training done to be intervention specialists in the regular classroom along with Title 1 Reading (a state funded program). Later in the fall, she also started a tutoring program called "Whiz Kids" through our church. Her tutor helped her not only with her reading skills but she also helped her with dealing through her Grandma's Cancer and death in 2011. Kathy is one of those people that are truly "Heaven Sent".

Finally, second grade came and went...that year she continued Title 1 and graduated out of that program to become an ADVANCED READER! She also continued the Whiz Kids program as well. My husband and I also continued to work with her at home. Then 3rd and 4th grade have happened...she is still exceeding our expectations with mostly A's and reading above the level they say most kids are at during this age and grade level.

Last year; however, was a big challenge! She had so much homework and struggled a bit. She got a few bad grades 2nd and 3rd quarter. KK did improve by leaps and bounds by the 4th quarter. What happened during 2nd and 3rd quarters? The Focalin stopped working for her. We ended up trying Adderall which has been the biggest mistake of this journey to date. Adderall changed her completely and even became combatant with me. You see, KK is a gentle-natured child. Never once has she ever tried hitting me, kicking me, etc. She was constantly screaming at me, hitting me, kicking me, and one time even bit me! I took her off that immediately. We then tried Concerta and thank goodness it finally worked.

Back in May, on the last week of school, KK was not taking her medication. She came to me and asked if she could try school without the medicine. She also wants to attempt 5th grade without the medication. I am going to let her try it. I told her that she is going to have to be ready to fight. That she was going to have to understand that Mom and Dad would have to really get on her this next year. She understands and is ready to rumble with 5th grade!

My point being with this tale is this: Don't give up! Please do not give up on your child..now matter how big or small their struggle is...keep fighting for them. You are their best advocate. KK's problems aren't as big as some but her struggle has been real and at times, has been painful to me. I hate seeing my kids struggle. What parent doesn't?

You may only see small victories and you will see some big victories along the way. Whether or not that victory is big or small, it was still an accomplishment. Celebrate each and every one...kids grow up fast these days.

As a result of these struggles, they have prepared me for the bigger undertaking in our life. SuperE. That boy still continues to frustrate me, amaze me, wrenching my heart out of my chest every day...more on his victories the next blog post.

My Beautiful KK

For those in the USA...hope you are having a Happy 4th of July weekend!

KK, Peanut, and Super E

Brush or Not To Brush (and other stuff)

Well, my plan to blog about brushing everyday didn't happen. In fact, the brushing and joint compressions, have not happened.

I tried to make this happen but being a full time working Mommy  and sometimes getting others on board is the much harder task. I do sometimes do joint compressions when SuperE is wound up and it does seem to calm him down and it does seem like he will focus more. The brush is tucked away in a drawer for future reference.

There have been some good things going on in our life lately. SuperE is still quirky as ever. However, I do see improvement in behavior. He has good days and he has some bad days. Today at church he wasn't horrible but he had some behavior that we are still trying to get him to control. You see, SuperE, always feels like he has to bring something with him whether it is a toy rocket or something as simple as a toy block. I wonder if this is just something that brings him comfort? Perhaps. Well, today it was a red Lego block. For some reason, he could not pull himself together, he could not control the impulsivity, and ended up running all over the building. Finally, he found his way to me. Of course, I had to firmly tell him that this was an unexpected and unacceptable behavior. I also informed him that if this continued that I would have to call Daddy to come take him home. He says to me, "But Mommy, all I need is my red block. That's the only problem and then I promise I won't run anymore." I guess he just couldn't get the words out to his teacher to explain the thing that he needed. I told him that next time he needed to ask Ms. C to bring him to me if he wanted to get something. I also explained how running around the building was an unexpected behavior and that he could not do that and we have rules to keep us safe and others safe too.

Some days you just never know what is going to happen next.

The best thing that happened this afternoon...lots of hugs and snuggles with my little man! =)

Here's to another week of quirks...but I am ready...BRING IT ON!

Wilbargers Brushing Protocol and Joint Compressions Day 1

This morning I started using the Wilbargers Brushing Protocol with SuperE. I did it with only reading the paper and my Dad giving me instructions. I didn't do it right! This morning was one of the roughest we've had this year. It was raining this morning, the bus was late, and SuperE couldn't understand why I would not let him take his MobiGo to school.

For starters, the rain brings out the meltdown every time it rains in the morning! He was wearing a raincoat and was still cringing every time a drop of rain came down...it was a downpour. I don't know if it is the sound of the rain or simply it is just because it is water. SuperE also hates bath time...often obsessing about water being poured over his head or even laying down in the tub because he might drown.

It is recommended that you do the brushing and joint compressions every 2 hours. That is just not going to happen. The therapist did tell us to try 3 times a day. I am hoping the new sitter is willing to try the technique eventually. So, here we go only doing it 2 times a day.

I feel prepared and ready to try this tonight! I have watched a few YouTube videos, more advice from OT, and also instruction from the PT at school. Here goes nothing...I will let you all know how it goes but in the meantime, for more information, check out the following website that explains this therapy:

http://www.nationalautismresources.com/wilbarger-protocol.html

Kindergarten Fears

My baby boy is finally going to Kindergarten on time, just as he should, this next school year! I am so torn in all of this because I fear that he is not ready. Academically, he is ready. Socially, not so much. I trust his teachers and their opinions and expertise on this matter. However, I have this niggling little feeling of disaster.

 I fear that I am going to receive phone call after phone call every day saying, "Mrs. My Quirky Son, this is the school principal. SuperE has disappeared from the building." or "Mrs. My Quirky Son, this is the school principal. SuperE has been kicking, hitting, and biting the teacher." or "Mrs. My Quirky Son, this is the school principal. SuperE does not qualify for extra help because the State of Ohio has cut funding."  These are things I actually dream about happening and even scarier, funding being cut is happening. What is the future for my quirky son?

I am worried that he will go to school and the other kids in his class won't understand his quirks and that they will end up picking on him. Nothing tears this Mama Bear's heart more than when one of her kids or any kid are getting bullied or picked on.

I worry that he isn't going to be able to concentrate enough to learn. That when they test him, he won't do so well. I have so many questions about this. Are they going to have a helper in his classroom? Honestly, I don't think that he is going to be able to sit down long enough without pacing, circling, or hiding under tables without an adult to sit by him constantly. He is barely able to do this now. I think it goes okay because there are many helpers in his classroom. I don't remember there being any extra, trained helpers when KK was in that grade.

I am a full time working Mom. How am I going to balance working full time, making sure he gets what he needs, making sure my daughter gets what she needs, and keeping my home in order? There are just not enough hours in the day to get it all done. Not to mention I am a wife too...how am I going to keep my marriage together? I am feeling like my life is spinning out of control. I pray and I write and I do calm breathing exercises...I am about to break. Maybe my fear isn't related to SuperE going to Kindergarten, after all. Perhaps this fear inside of me is simply of failure.

CHD Awareness Week 2/7 to 2/14/2013

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.

Please check out these websites for more on CHD:

Children's Heart Foundation

Kids Health: CHD

Facebook Pages:

Childrens Heart Foundation

Baby Jacob

I Sense A Full Moon is Coming...

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! 

PDD-NOS...so, now what?

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!

Who Cares If I Might Look Silly?

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.

To All the Parents of Special Quirky Superheroes!

Dear Parents of Special Quirky Superheroes,

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!

Why do I write?

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.

The Quiet Person

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.

Dancing

Looking back to this episode of "So You Think You Can Dance", I now get why they were so emotional. I got it when watching the show and I teared up but I didn't get it, get it...you know what I mean? You see, the back story to this dance was that the choreographer, Jean Marc Genereux, designed this dance for his daughter who has Rett Syndrome and was performed June 18, 2008. Little did I know, that my own special child would be born exactly one month later! (I only just now realized this and I am tearing up...) In fact, my labor started while watching SYTYCD! Now, I watch my son dance, oh so uncoordinated, and just smile. From this, I wondered how dance could help a quirky kid...




Hope Dances is an outreach program all about dance for special needs! Not in my area but it exists.

Dancelot East Side of Cincinnati (a little too far for us) offers dance classes for special needs children here on the east side of Cincinnati.

Sadly I haven't found any dance studios on my side of town! =( I am going to contact our local dance studies here in my city to further investigate. I googled music classes (since I didn't have luck with dance) in my city for special needs and got this: ODE and Music Therapy Cincinnati and Families with ASD Music Therapy References.

Resources-Books

So before I begin, I think in order to share resources with everyone I am going to share blog posts with different resource categories. Not sure if this will work or not but I need to start somewhere.
Research is going to be your biggest tool in finding help for your child! I haven't read all of these yet. I have read a few and found those helpful. The ones I have read will have an * by the title. As I do some more research and read more of these books, I will post what I have found and so on. Please feel free to comment with your own suggestions.

ADHD: Attention Deficit Hyperactivity Disorder

1. Negotiating the Special Education Maze: A Guide for Parents and Teachers By: Winifred Anderson, Stephen Chitwood, Deidre Hayden

2. Making the System Work for Your Child with ADHD By: Peter S. Jensen, M.D.

3. Taking Charge of ADHD: The Complete, Authoritative Guide for Parents (Revised Edition) By:  Russell A. Barkley, Ph.D., ABPP, ABCN

4. *The ADHD-Autism Connection: A Step Toward More Accurate Diagnoses and Effective Treatment By: Diane M. Kennedy

OCD: Obsessive Compulsive Disorder

1. Stuck: Asperger’s Syndrome and Obsessive-Compulsive Behaviors By: Jonathan Hoffman, PhD

2. Stop Me Because I Can't Stop Myself: Taking Control of Impulsive Behavior
by Jon E. Grant, J.D., MD, and S.W. Kim, MD

3. Helping Your Child With OCDby Lee Fitzgibbons, PhD, and Cherry Pedrick, R.N.

4. What to do When Your Brain Gets Stuck: A Kid's Guide to Overcoming OCD
by Dawn Huebner, PhD

SPD: Sensory Processing Disorder

1. Sensational Kids: Hope and Help for Children With Sensory Processing Disorder (SPD)
by Lucy Jane Miller

2. No Longer A SECRET: Unique Common Sense Strategies for Children with Sensory or Motor Challenges by Doreit Bialer and Lucy Jane Miller

3. *The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder, Revised Edition by Carol Kranowitz and Lucy Jane Miller

4. Parenting a Child with Sensory Processing Disorder: A Family Guide to Understanding and Supporting Your Sensory-Sensitive Child by Christopher Auer MA, Susan Blumberg PhD and Lucy Jane Miller PhD OTR

PDD: Pervasive Developmental Disorder

1. *Quirky Kids: Understanding and Helping Your Child Who Doesn't Fit In- When to Worry and When Not to Worry by Perri Klass and Eileen Costello

2. Pervasive Developmental Disorder: An Altered Perspective by Barbara Quinn and Anthony Malone

3. Autism, Asperger Syndrome and Pervasive Developmental Disorder: An Altered Perspective by Barbara Quinn

I am still researching and looking for more book ideas. I will add to this as I find more...stay tuned!

Drained

As I write this blog at 12:35 am, I am exhausted, drained, just done...

I am so excited to be writing this blog and to be having a page on Facebook. I just want to help people. I want to help people that live in or near my community find resources to help their special kids. Originally I was going to keep all my quirky posts on my other blog:  I Am A Work of Art (with a messy room), but I have decided that they need to be 2 separate blogs.

I am frustrated with waiting for appointments, evaluations, IEP's. All of this is so confusing and quite frankly, I am feeling like I want to throw in the towel.

So far, we are awaiting a diagnosis of PDD. This is going to be further evaluated Friday, December 14, 2012 with an ADOS test. I found a private practice psychologist that will administer the test! We went to a well known facility in our area only to be told that because he communicates he has no autism. I am calling BS on that one...Correct me if I am wrong but isn't there different levels of the spectrum; some are verbal and some are non-verbal.

I keep thinking to myself that I am crazy. Am I really seeing these things? I keep going over everything again and again. My brain says this isn't what that is, it's just him being quirky. The conflict? My heart keeps telling my to push forward, my child is a little different, he has issues, these issues are pointing to the "A" word, and I will not rest until I get a diagnosis.

I am a fighter. I always have been. I don't give up and I won't give up. In fact, my favorite saying:

For now, my goal is to take it one day at a time. My next goal is to get on here and open my big mouth to help others!

Please share with me any resources or ideas. We Mom's (and some Dad's too) gotta stick together.

My Quirky Superhero

quirk·y/ˈkwərkē/

Adjective:	Characterized by peculiar or unexpected traits: "quirky charm".
Synonyms:	peculiar

More info »Dictionary.com - Answers.com - Merriam-Webster - The Free Dictionary

Yep, that's my boy! He definitely has quirky charm! When I first thought my son had a problem, I didn't understand the exact problem. So, me being "the one who researches mystery illnesses and issues with google", came up with nothing. But I knew in my heart, that something was different.

My son was 18 months old and he was not acting like he should at that age. I brought this up to my husband and told him about how the pediatrician wanted us to take him for some evaluations. I should have listened to my gut feeling and not my husband's advice.  He said, "There is nothing wrong with our boy. We do not need to have him evaluated for anything. You are just being paranoid." From about 18 months to 3 years, he continued not to talk much and avoided eye contact.  He played yes with a lot of imagination but it was as if he was in his own world that I refer to fondly as "Eli World". His play was very repetitive in that he would pretend he was inside of a Dora cartoon, and when he would talk, it would be either singing Dora songs or repeating dialogue from the many Dora shows. Now, he watches more than just Dora but each week he gets "hooked" almost like how the old record players used to skip. He would often pull out cans of veggies or soup out of the kitchen cupboard and would stack the cans to make "Big Towers!".

Eli requires a strict schedule and what I mean by that is any change in routine puts him into a tailspin.  He becomes quirkier. I've also noticed his "quirky behaviors" come out when he is really tired or overstimulated. Often, (this even goes back to when he was younger) he will hum to himself and/or will spin in circles flapping his arms. He does not maintain eye contact at times and when you take pictures of him he often will avert his eyes to a different direction. He has no impulse control at times i.e. jumping off of the top of the couch to the floor or running out the front door every morning because he thinks that because his shoes are on and he is ready that he can just walk out the door without Mommy or Daddy. When it gets to be too much for Eli, he hides in many places; under the kitchen table, in his room under a blanket, behind the bushes to our church entrance or the tall ornamental grass in the summer time, and yes even behind the tents set up for VBS. But that's my favorite quirky boy, what other choice do I have but to love him?

Fast forward to October of last year, I was able to get him an evaluation through our school district while awaiting various appointments through Children's  Hospital. The teachers agreed that something was off with Eli but they would not tell me their honest opinion because they are not doctors. Their suggestion was to go through the speech evaluation first thing and then get back in touch with them. They even promised that they would be seeing Eli again soon. Another month goes by and we finally got the speech evaluation. His diagnosis was a speech and language delay; he tested at a 2 year old level (he was 3 years and 4 months at the time of testing). That alone got him his IEP and a spot for preschool. However, Eli did not start school until March, 2012.  There was other paperwork and also an appointment with the DBPP or whatever that department is called at Children's.

January, 2012 we met with a nurse practitioner at Children's with Eli, my husband, and myself. She immediately dismissed the notion that he could be on the spectrum of Austim. Her exact words to me at the end of the appointment was "He does not have Autism because he communicates with me and he is communicating with you." I was enraged! I held it in and did not become unglued. I just smiled and said "While I appreciate your opinion, I do not agree with you and I would like to do some further testing. And actually, would like a cognitive test done."

February, March and April of 2012 is a great big blur to me when I think back to everything. Eli was still quirky and still the same. During that time we endured 2 parts of the cognitive testing.  The parent session where it was pretty obvious to the doctor that my husband and I did not agree about Eli but we both agreed there were some problems. Then came the 2nd part, Eli's actual evaluation. Because this area hospital and this particular department is so overloaded with patients, I was not able to get the results until July! His test was done in April!!! So what happens next, I MISSED THE APPOINTMENT! Ugh!

I ended up rescheduling and had an appointment scheduled for August 28th.  I go to the appointment that morning and I end up getting stuck in over an hour worth of traffic (didn't realize it was UC's first day back!) and I am calling the office from 8 am to 8:10 am; nobody answered! Their phones were not on until after 8:10 am.  So I call and ask if I will still be seen.  The customer service person that answered the phone was not nice about it and gave a nonchalant, attitude filled response "Probably." So I say, "Okay, let's see if I can make it on time." So I call back at 8:20 am and got the same person. I asked her if I could still be seen, explaining through tears that I needed to have this appointment because of his IEP and I can't take anymore time off of work. She says "HOLD ON" with yet again, an attitude. I am crying now even harder and I say out loud to myself "YOU ARE SUCH A FAILURE! WHY CAN'T YOU GET ANYWHERE ON TIME? WHY ARE YOU SUCH A BAD MOM?" Finally, the CSP gets back on the phone, "The doctor will still see you if you get here before 8:30.", with the same attitude problem as before. I say to her, "Thank you so much for checking on that for me! And I will get there by 8:30." Yay! Something might just work out. I pull into the parking garage and it is 8:25.  I run out of my car and dash to the elevators. I get up to the 3rd floor and run through the doors and go to the automated check in desk and fiddle with that and then it says "You must sign in with the receptionist if you are past your appointment time."  I turn to the CSP and say "I'm finally here!" She gives me the look (you know, the I have the power kind of look) and she says, "I'm sorry but I don't think you can be seen. It's 8:29 but let me go check." I am devastated and start hyperventilating and the sobbing cries come back along with the CSP and she says"I am sorry but you can't be seen today." It was like the world came to a brief stop, like a water pot getting ready to boil over and then BOOM! I became unglued completely! I screamed at her, "It is 8:29 am and I am here before 8:30 am.  This is the worst service that I have ever encountered. If this were at my office, the patient would be seen!" She says, "Hold on. Let me go get Dr. so and so's nurse."  My face is red and I go out of the waiting room back into the hallway slamming the doors and punch the wall. At this point, I am sobbing, hyperventilating, and have snot, lots of snot running down and out of my nose! (Not one of my finer moments in life!) The nurse comes out and I completely explode on her, pouncing on her like my cat does with her catnip toys. (not physically but verbally) She really was professional and kept her cool so well. My temper tantrum did not work and I think at that point someone may have called security. I left.

The humor in all of this... I was about to start "Unglued" with my Lifegroup at church the very next day and the OBS through Proverbs 31 in the next week or 2. (I really could of used this study that day!)

A few weeks later, I sucked up my pride and went back for another appointment this time with my BFF for moral support on September 17, 2012. I even apologized to that poor nurse that I had pounced on! We are in the appointment and we are going over the test results, mostly average or above average. Now, this doctor that I am going over the results with has NEVER, I repeat, NEVER, had a face to face appointment with my son.  She finishes with, "At this time, my colleagues and I feel that your son has no Autism." I should have been happy with that. Oh No! I looked at her and smiled sweetly, "Well, I don't agree with you and your colleagues. That is why we are seeking a second opinion." Her diagnosis was disruptive behavior disorder. My son does not have disruptive behavior disorder. Sorry but he does not. I am not in denial. My gut feeling is telling me to push forward with a second opinion.

My point being in all of this....I WILL NOT GIVE UP! When it comes to my kids, I will be their voice and their advocate until the day I take my last breath. I will fight for them.


***I forgot to tell you...I have an appointment tomorrow (Thursday, 10/17/12) with Eli's pediatrician and it is the doctor that handles the behavioral and autism side of the practice. Please say a prayer that I can get him to listen to me and that I can get him to understand that Eli's problem is not just another behavior problem. At least Eli still has his IEP....