Wow! Finally – Down Shifting!

ImageWe have had a whirlwind weekend at Chez-Oz!  Friday evening consisted of a very important hockey game which, due to a totally awesome victory, lead to a road trip the following day for a championship game.  Not to mention the excitement for Mia’s karate belt graduation on Saturday.  And I would be remiss if I didn’t mention the resurrection of Mia’s iPod thanks to some savvy techs at the local repair shop.  The poor thing had been without it for close to three months and is now the definition of a happy camper.

Once her graduation was over she and I hopped in the car for an overnight “roady”, as the hockey lingo goes, to a beautifully placid place for the hockey championships.  Bella was away for the weekend with a friend and her family so she missed out on all the craziness but had, in her words, “a total blast!”

As if that weren’t enough, after the devastating loss in hockey we were up bright and early to get back home for a family birthday party.  Am I done?  Ohhh no!  Once we made it to the party we came home to pick up Bella and finish a school project that Mia was supposed to have worked on with a classmate.  (Why oh WHY do teachers insist on group projects?)  After multiple attempts at trying to get her classmate to finish the project, we just decided to ditch the classmate and finish it ourselves.

After running to the crafts shop to grab a few last minute things for the project, we come home Sunday around 6 pm to a phone message from said classmate’s mom begging us to meet up at her office to finish the project.  I stood my ground but not wanting to ruin things for Mia, I caved and we went and spent over two hours finishing up that blasted project which, of course, the mom, Mia and I worked on while the classmate “played.”

I so just wanted to take a nap this morning but the busy weekend left the house looking like a Kansas tornado blew through so here I sit wanting nothing but a nap as I clean, pick up and reminisce over a totally awesome weekend!

On a side note, last week I sent an email to Bella’s PE teacher to thank him for going the extra mile in a unit they are doing because he made sure he tracked down equipment that would fit Bella’s size.  Here is his response;

” It is my pleasure, I admire Bella for her effort to always do her best
without excuses. She remains positive when many students would give up. I
will always do whatever I can to support her efforts. Thank you for the
kind words …”

After reading that, I suddenly don’t feel so tired …

I’m Probably Going to Hell for This …

Image…but I had to laugh this morning.  There is a teen in our community who has a horrible illness that could have been life-threatening yet it was caught early and the doctors are confident that this teen has a 100% survival rate on kicking this disease’s ass.  The treatment sucks and the child is on various meds, missing a lot of school, etc. but in about four to six months, will be completely fine.

I know the mom must be going through hell and all the running to doctors and the hospital for treatment has to be a royal pain (been there!) but … you’re child is going to be fine!  The mom is part of the same group of people that I deal with on a regular basis who I have to treat almost like children to get them to understand that when it comes to Bella you need to remember certain things; 1)  You can’t pull on her limbs 2) Her arms aren’t long enough or strong enough to absorb the impact of a fall – it will be her skull that will take the brunt of it.  3) The closest hospital with the staff that knows how to operate on the head of a child with dwarfism is over five hours away.  I could go on and on but you get the idea.  If you are a parent of a child with dwarfism, you know the drill.

Yet, I can’t help but want to wave the “HELLLLLLLLO!” flag at this mom over her recent comments about being concerned about her suffering from PTSD once all of the trauma of this medical event with her child is over.  She said, “Everyday it’s something,” Really?  No shit? Welcome to my world!  (Yes, I said, “shit” it won’t happen again).

Not that I am screaming for attention here but other parents with kids with special needs don’t have the luxury of knowing that they just have to hold it together for a few more months and life will go back to some semblance of normalcy.   There will be emotional scars, sure, but for the most part, it will be all over.  Moms like me will never even grasp what that light at the end of the tunnel is even like, it just simply isn’t an option for us.

I know I am being irreverent here but I am just dumbfounded at how myopic people can be.  I really have to wonder if it has anything to do with the fact that we have always kept Bella’s situation within our family and close circle of friends.  If she has something going on medically, or potentially going on, we don’t go posting it all over Facebook to make people feel sorry for us or to tisk, “Oh! That poor family!”  It is our cross to bear and I am doing what needs to be done for Bella and no one else needs to know about it because it is just water cooler fodder for them.   If you need to be in-the-know, I will let you know!

I know that this mom is most likely just having a weak moment where she felt sorry for herself and made those feelings public.  I know that she is right in the middle of the storm with the medical side of her situation with her child and can only see how things affect her and not vice versa – please – don’t think that I am heartless.  I can totally understand where she is coming from but to be worrying about having PTSD when this is all over?  Come on!

I just wish people could take the time to realize that all of those kids with special needs that they pass in the store, at the mall or even at the hospital, have parents that live with whatever the condition may be, everyday …. forever.

(Thank you for letting me vent today!)

My Mia: My Gift from God

ImageAfter realizing that many of my posts deal with Bella as of late, I thought I would dedicate this post to Mia.  While Bella is at the beginning of a very volatile time in her life, Mia is at a very solid, comfortable place in hers.  Yet, that wasn’t always the case.  From the time she was very young, Mia preferred to play alone and be by herself.  She seemed more content that way.   As she grew older and started school, some social issues began to pop up and academic ones as well.  Everything really came to a head when her 4th Grade teacher came to me and told me that she was very concerned about Mia.   I won’t bore you with the details but once she was tested and her diagnosis of Central Auditory Processing Disorder was confirmed.  It seemed to truly help her and us to be able to put a framework to her uniqueness.

Mia was named after my grandmother and let me just tell you that my grandmother was one of my best friends.  I loved and adored that woman so much and losing her in the early 90’s was the most devastating event of my life.  When Mia was a toddler, she would look up sometimes and it was as if my grandmother was in her eyes.  Her physical features and some of her facial expressions are exactly like her great-grandmother’s.  In fact, a cousin was visiting once and I had told him about Mia’s expressions that were just like our grandmother’s.  He was on the floor playing with her and out of the corner of my eye I saw him almost jump out of his skin, startled by something.  I looked at him and he just shook his head.  Later he told me that he saw the expressions I had told him about and it was as if our grandmother was right there looking at him.

Now, I am not saying that Mia is the reincarnation of her great-grandmother, I don’t believe in reincarnation.  What I do believe is that God knew how much I missed my grandmother and he gave me a little piece of her in Mia.  He allowed the physical characteristics that were in our gene pool to be prominent in Mia to remind me everyday of my grandmother.

About a year and a half ago, Mia began to grow academically, socially and personally.  She and I were always very close because I seemed to understand her when those around her didn’t.  When Bella would be “kidnapped” by my mom for a few days at a time over the summer, Mia and I considered those days as “Mommy and Mia Days.”  We would do fun things that she wanted to do, go places and spend time together.  This was a wonderful time and it built an amazing foundation for us and that trust and comfort that we established then has allowed her to confide in me and flourish over the past year or so.

We understand her learning issues and know how to combat them now, we understand her social quirks and are well on our way to ironing them out and she has made amazing strides academically in the past year.  Yet, while I may take credit for some of these strides, I need to give credit to that one piece of the puzzle that, when it was finally put in place, made Mia one of the most incredible pre-teens I know.  That piece was karate.

Mia hated anything that was competitive; board games, card games, video games – if it was an activity that had a winner and a loser she wanted no part of it.  We tried exposing her to extra-curricular activities and while she would participate in them initially, once they began to get competitive she wanted nothing to do with it.  I cannot tell you how many flyers came home form school and each time I asked, she would say she wasn’t interested.  The day the flyer came home for karate though, I almost didn’t ask her but that little voice, which I am sure was God, told me to ask anyway.  I will never forget the smile on her face as she stood in the dining room with her arms raised in the air, “YES!”

This coming weekend she will be graduating to her 5th belt level and she has become one of the leaders of her class.  We are at the dojo at least five nights a week and I cherish every moment because she is so happy there; she is in her element.  She loves everything about it because they emphasize personal growth and getting better on an individual level and the competitive nature of the sport is gradually built into what they do.  The instructors are fun, well-trained and create an environment of positive motivation for the students and the kids have such respect for them – when one of them compliments Mia on how well she did something the smile on her face makes me tear up almost every time.  All that runs through my mind is, “Thank you, God!”

Karate spills over into all aspects of her life because they also teach her life skills as part of the program.  She works hard everyday at school and knows that because of her CAPD she has to work a little harder, yet through karate she has learned that hard work pays off once you put in the time and efforts necessary.  She is well ahead of those of her generation who expect things from life without putting in the work ethic required to earn those rewards.

Two years ago you would have regularly found me in tears, worried about Mia’s future and how she would survive in this world.  Today I cry as well, but for the opposite reason!

And People Wonder …

Diana hard at work apparently …

As is quite clear of late, my give-a-damn is busted.  Often times when you have special needs kids the loop with medical care, specialists and medical opinions can seem never ending.   We try our best to stay on top of things, to make sure medical offices have all the paperwork, that insurance companies have prior approval of appointments, etc.  We make follow up calls, emails and send letters making sure everyone is on the same page so that appointments go as planned.

Well, back in August of last year, I started to get paperwork moving for an appointment that is next month for an out-of-state specialist for Bella.  I was given a contact person and told to exclusively work with her.  Well, after FOUR separate emails that all received out of office automated replies back and no action whatsoever from her I had to go over her head twice to get her to do her damn job. Then this morning after another email to the powers that be, I find out that last week information was sent to the wrong doctor (and the doctor’s office not even questioning why they were getting the paperwork), and now new people are joining in after I go over the head of my initial contact and now am having to dig through my files to find paperwork that has been misplaced.

Yeah, as one friend on Facebook wrote this morning, “We should all be thankful that you have hockey as an outlet, otherwise there would be a trail of bodies behind you!”  Couple this medical nightmare with the BS from the last few weeks with my extended family, it really is a miracle that I haven’t killed anyone yet.  I just got off the phone with my mom and told her this whole sorted story and she laughed like crazy when I told her that our old pediatrician (the one who got sent files erroneously) should thank his lucky stars that I hadn’t showered before taking the girls to school because I would have been in his waiting area talking loud and letting every parent in the room know what a hack they have as a pediatrician for their child.

Now, just a few moments ago, I get a call from the specialists office, asking for some info to set up the appointment that I have been trying to get set up since AUGUST!  The nice girl Courtney said that Diana had called her this morning and asked her to call me to set things up.  I will give you all one guess who Diana is – ding ding ding – you guessed it, the one who was my point of contact whose email apparently only send out of office replies.

I sat for a moment and wondered why Diana was suddenly doing her job … then it hit me!

I guess that veiled threat of printing out the email thread and sending it to the Board of Directors of the hospital with a chronology of events did the trick!

Oh!  What a surprise, the present pediatrician’s office just called, they got the paperwork they needed and have forwarded everything to the insurance company – the decision should be in by early next week – shocker!

Be Good Anyway

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It is often times hard to raise kids because every family has a different value system and when there are conflicts between your child and another one of their peers there are a litany of issues that come into play.  Unfortunately, when you are a parent who sees things as black and white, right and wrong, other parents are looking at the big picture and how their handling of an issue with their child will affect their position or social standing.

For the past year or so we have had an issue with the daughter of someone who holds a visible position in our church.  This girl had been bullying Bella and several other girls in their age group. It has been a rocky road and the things that this girl’s parents have done and said would get the entire church in an uproar or should I say, it should.  Like it or not there are cliques within a church and when you have kids with special needs, you aren’t going to be part of that perfect Christmas card family that everyone wants to portray every Sunday morning.  

We brought our issue to a select panel of church leaders and while I was told I did nothing wrong with bringing my concerns to these parents, after meeting with us both, it was decided that each family should deal with the issue separately using it as a teaching moment for each of the girls, etc.  We were also asked to not discuss it with anyone outside of the panel and our individual families.

I have watched Bella be marginalized and often ostracized because of what this girl and her parents have tried to do to us.  It has been very hard for me because it has affected me as well. It seems that our family is the only one who respected the panel’s wishes that we not discuss it beyond those already involved. This past Christmas the mother, without mentioning my name, told a room full of women from the church about how someone “went after her daughter” and that she “fought back hard and was filled with hate towards this other mother.”  A close friend of mine, another mom, was in the room during this Christmas event and was floored that this mom was ignoring the panel’s request to not discuss the issue further and basically using a public forum with a captive audience to slam me without my knowledge.  

I have struggled finding a way to explain and justify all of this to Bella.  We have talked about it over and over again and I have watched her so-called friends transition from being Bella’s friends to being the bully’s friends because of who her parents are.  The bully’s mom has told other moms to keep their daughters away from Bella and I have watched my daughter and the rest of our family shunned for the most part by people in the church.   Yes, I know it is time to find a new church but in the mean time, Bella has decided that she wants to stand her ground and stay to make a point.

She made this decision because of this poem that I shared with her that Mother Teresa apparently had on her wall in her room in Calcutta …

Mother Teresa’s Anyway Poem

People are often unreasonable, illogical and self centered;
Forgive them anyway.

If you are kind, people may accuse you of selfish, ulterior motives;
Be kind anyway.

If you are successful, you will win some false friends and some true enemies;
Succeed anyway.

If you are honest and frank, people may cheat you;
Be honest and frank anyway.

What you spend years building, someone could destroy overnight;
Build anyway.

If you find serenity and happiness, they may be jealous;
Be happy anyway.

The good you do today, people will often forget tomorrow;
Do good anyway.

Give the world the best you have, and it may never be enough;
Give the world the best you’ve got anyway.

You see, in the final analysis, it is between you and your God;
It was never between you and them anyway.

So, Bella has decided that no matter what others say or do, she is going to “be good anyway.”  Every morning when I drop her off at school with the sharks, I yell out the window, “Remember, Be good anyway!”  She always smiles back at me.  Her strength is a marvel.  

We are AWESOME!

ImageWe all go through days when we feel so inadequate, not good enough, even wondering what the heck God was thinking when he put these kids in our care.  You almost wonder if, when you get to the Throne, if you are allowed to ask questions, what will God say when you ask Him what He saw in you? What was He thinking? 

I have had an epiphany of sorts, it is one that I have a few times a year and I think that God allows me to keep having it because, for some odd reason, I just can’t seem to absorb it, accept it and incorporate it into my persona.  

I am a good mom.

To dovetail off of one of yesterday’s posts, I have been reinforcing the fact that the only people we need to please are the ones that live under our roof.   I have been stepping away from a lot of my other outlets (except you all of course!) and focusing on what is really important – my life, my girls and my family. 

On Super Bowl Sunday we had a great time!  We had some snacks, dip, etc.  and I got some pizza shells and we made homemade pizzas that were really good.  Then, for some insane reason, I cleaned out the pantry, all of the kitchen cabinets and reorganized them all.  Now, you have to understand – housework is not my thing.  My husband checked my temperature a few times during the day! LOL

 I have no problem with a little clutter here and there, but the place is clean.  For example, the dining room table is full of the girls’ school books and papers, etc. from doing their homework last night.  No big deal … not going to lose sleep over it. 

(As an aside, for you special needs moms out there – don’t be afraid to request an extra set of textbooks to keep at home.  This is a great tool for parents to help keep up with what is going on at school and to help with studying, etc.  It has been a godsend for us!) 

Monday, I again had another productive day, getting lots done, keeping my focus where it needed to be and not even worrying about people on the outside looking in.  I did my thing and the girls and I had a great evening, they worked hard on school work and Bella came home with a great report card!  She has improved dramatically in the past year and has made some huge strides personally and homework time was enjoyable!  Yes, I said enjoyable!

Today, another awesome start to the day, the morning went smoothly, did some shopping  and got the girls some things they were asking for and came home to an excited dog, happy to see me.  Started some homemade sauce, got the breakfast dishes done and met my goal of getting the blog post done by noon.

So, I know we all have moments when we question what we are doing, if we are doing what we’re really supposed to or if we’re only marking time … it is moments like these past few days that we just own for ourselves to remind us that we are doing what is right, we are doing the best we can and that, this is enough.  In fact, it is awesome!

Us vs Them: The Judgmental Clueless Among Us (RANT!)

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Happy Sunday, Readers!

I have decided that with this nasty cold that I am taking over our bedroom for the day to do whatever I want!  Yeah, a rare selfish moment!  So, here I sit watching Law & Order: SVU, not one of my faves but the beginning of the episode looked promising and within about 10 minutes of the episode I had my blog theme for the day – the clueless.

In this episode someone steals a canister of embryos from a fertility clinic and the detectives get a list of clients who might have had something against the clinic.  One of the people they speak with is a wife who is a dwarf, like my Bella.  As the detectives interview her she explains that the reason she and her husband, also a dwarf, were using the fertility clinic was because they wanted the clinic to implant an embryo that would result in a dwarf child just like them.   Just a quick informational break – when two dwarfs hope to have a child there is a 25% chance that the child is average height, 50% that it is a dwarf and 25% chance that the child has what is called a double-dominate gene and those in this last category do not survive.  So, this dwarf couple were trying to avoid the double-dominate gene and shoot for the 50% range.

Former rapper Ice-T, as Detective Tutuola, while interviewing this dwarf wife asked, “Why would you want to bring a child with a disability into the world?”  The look on his face was one of confused disgust.  I actually rewound the DVR to watch the scene again because it ticked me off beyond belief.  The mentality of the clueless and uneducated never ceases to amaze me.  I guess you just have to have a cursory understanding of pop-culture to write for a TV show these days.

Thankfully the dwarf wife retorted, “Forgive me for wanting a child that looks just like me.  You get to have that luxury, why shouldn’t I?” and then she went on to explain to him that Achondroplasia isn’t a disability, etc.

But this entire scene just frosted my ass to no end.  The superficiality of our culture continues to grow almost exponentially and with the constant emphasis on genetics and people screening sperm donors based on physical characteristics and/or intelligence is beyond sickening.  This dovetails off of the story that became front-page news last week about the fabulous waiter in  Houston, TX who refused to serve a family when the father made rude and insulting comments toward a boy with Downs Syndrome who was also dining at the same restaurant with his own family.  Kudos to the waiter and big “bite-me” to this piss-poor father.  I hope he has gotten so many unpleasant phone calls that he and his family had to change their phone number.

What the flip is wrong with these people?  Their twisted sense of superiority and God-like knowledge of what is right and wrong makes me want to knee them in the nuggets and then slap them sane.  I get those looks all the time when I am out with Bella and there have been more than a few people who have gotten a education with my face about six inches from theirs.  In the beginning I would just ignore the comment and give people a nervous smile, not say a word and just walk away.  Now, it is the complete opposite, I either send the kids off with The Hub or send them to another part of the store and then the gloves are off.

Here is the thing, these ignoramuses say this BS because in their demented worldview they expect us to revert like a turtle and hide in our shell.  HA HA!  NOT!   I have told people that God never gave them a special child because He knew they couldn’t handle it.  So what does that mean?  Yeah, I *am* better than you are,  Jackass.  I have a whole catalog of comments that I hand out like fortune cookies for the ignorant.  Now, don’t get me wrong, I don’t lash out at every single person that looks cross-eyed at Bella.  Over the years I have learned to glean if an individual (child or adult) is understandably curious or  out to make fun of or mock my daughter.  Remember that 6th Sense I talked about a few days ago?  We special needs moms have it – its a fact, so don’t hate.

It is *so* easy to judge when you allow South Park to be your Wikipedia.  But when your five year old is dragging you down an aisle of a store screaming, “Come on, Mommy! You have to see it!” and comes around the end-cap pointing at my daughter, trust me, mouthing “I’m sorry,” to me ain’t gonna cut it, Sister.  This is a teaching moment and if you aren’t going to seize the moment, I will.  Yes, this really happened, my daughter was called an “it.”   Hello People!  This is all behavior that is either directly taught by you, the parents or it is learned from people that you allow near your child.  Including from the insane TV shows that you allow to babysit your children.  So, to conclude, because of your poor parenting choices, you will be humiliated, in public, by yours truly.

Schools can post as many anti-bullying posters they want but unless parents, teachers and administrators take a good hard look at what they do to perpetuate this kind of thinking, nothing is going to change.  You might as well take all that money spent on anti-bullying programs and drop it into my PayPal account.  Like it or not, teachers and even an administrator or two are just as guilty as the “I’m sorry” Mom because they perpetuate this crap by not doing anything about it or by contributing to it.  Many teachers just don’t have the patience or tolerance when dealing with special needs kids. I have actually heard teachers say, “I don’t do special ed.”  They think they know better than we do on how to motivate and teach our children and in some cases, they refuse to listen to us … to the detriment of our kids.

The Clueless have no idea what our world is like and to be honest, most don’t really want to know.  They just smile at us with an appeasing smile and then, as they walk away from us, they thank God that it is us and not them.   Little do they know that we are the thankful ones and they, they are the ones that God needs to work on.