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....