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.