Wednesday, August 26, 2015

Diagnosis Day- One year after.

I remember the day like it was yesterday. Sitting in a nondescript doctor's office, thinking that it was going to just be a  routine checkup for my child. Husband deployed of course. As I watched my child, who on the floor happily playing and stimming away, the doctor quietly hands me a piece of paper. As she gives me what is the lab work done on my child, she is explaining to me that these is the result of the Fragile X testing we had done on my youngest son. It has come back positive. There is a feeling of numbness, that I don't think any parent who, when faced with getting a diagnosis regarding their child, can forget. Everything just goes blank. There was a point,for me anyways, where I could literally feel my heart break. I sat there, not being able to see clearly. Although, this wasn't the first time I had sat in a doctor's office and received a diagnosis for any of my children, but it was the first time where I thought, " What more can this child handle?" and " How much more do I have to do as a parent to make sure he will be ok?" Of course it meant more doctors to see, more specialists to talk to and more time that I need to make for this child. That day I am surprised I was able to drive home without getting into an accident. 

It has been one year since that day and what has transpired? The good, the bad and the ugly. To be honest, it has been a bit of a roller coaster. While we have learned to accept this diagnosis as this is part of who my son is, we have also seen some of the challenges he will face growing up with this diagnosis. We have endured testing through out the year from EEGs to Neuro-psych evals, with results that have either been informative to devastating. We have had to re work IEP goals with our school in order to find a way to incorporate what comes along with this diagnosis. Our biggest challenge this year, was dealing with the insurance and medical aspect of having a new diagnosis tacked on the all the other ones. For us, at least, it seems to be an upward battle to get people to see your child as not just a number but a person. Our struggle to get things approved or even recognized by some who are part of this child's life, has been frustrating to say the least. So what do you do? You push through it. 

One year after the fact, we have learned how to fight a different battle for our child. I have educated myself more on Fragile X, as I had to for the Autism part of our lives. I made sure that I researched all I could about my son's disorder, so that way, when I come up against a wall I was somewhat prepared for it. Each new doctor or specialist got added to our list, each with different questions that need to be answered. I relied on the support of my family and friends to get me through the days that I didn't think I would be able to make through.

With any diagnosis, the support is essential. Knowing who is going to be there for you and who isn't. Its the people who ask you what you need to help get you through it all, are the ones that are important. Anything from an ear to listen to you vent in frustration to the ones who offer to give you a moment to yourself. In the past year, I have discovered more online resources and support regarding my son's diagnosis. There is something to be said about an online community, we may not know each other personally, but we all know too well just what boat we are rowing in.

So a year after. We have all grown. We have all learned how to take things as they come. One step at a time. We will continue to move forward, the best way we know how. And as each Diagnosis Day Anniversary comes and goes, we will continue to live our lives, grow and prosper. For anyone who is just getting their first diagnosis and is in that state of disbelief, I feel you. I understand you. The first year, will be rough, but in time you will find your groove. You will learn and understand just what it means to have, or have someone you love have a diagnosis that impacts your life. It isn't going to be easy, but know there is a ton of support out there, we are here and we understand.

Monday, August 10, 2015

We are "That Family"...

It never fails that when we go out as a family, we are the ones that normally bring a lot of attention, not because we are any one of the celebrities that hog up internet space with their vapid existence, but we are a family that has special needs children. With having special needs as part of our family routine, often enough, we are the ones that turn heads, not because we want to, but because we have a dynamic that the rest of the world isn't use to.

On the outside we have learned to get used to the looks of sympathy or the whispers being said. We are even getting good at coming up with some pretty snappy comebacks to those who feel we need a talking to, in regards to our very awesome and spectacular parenting skills. But what happens to us on the inside? A lot of us parents, are hurting inside. We are reeling from the cruelty of the outside world. All those hurtful comments and whispers pile up. Those stares and looks are engrained in our brains and at the end of the day when we have our five minutes to ourselves, shortly after we have taken the long time to put our loved ones to bed, every thing comes back to haunt us. As much as we try to educate those who willing to learn and those who aren't, we still can't shake off the perception that the outside world has of our family. A lot of us just want to scream about how it isn't fair to be judged so mercilessly and that we wish that all those who have, could just for once learn what it means to walk in our shoes.

 Have the Ultimate Special Needs Experience! Its not going to be like a ride at Disney or an IMAX feature. It would tapping into what makes them a decent human being. Opening up their hearts and minds to something that is different from their norm. It would be sleepless nights of worry or a loved one that doesn't sleep. It would trying to get back and forth from daily errands, like grocery shopping, with having to manage a person who needs a little extra time.They would have to go on outings like restaurants, parks and possibly a pool and deal with people staring as their loved one attempted to fit in with the rest of the world, all while having no control over their own bodies.  They would have to go to doctor appointments, sit there and listen to the doctor tell them not so great news about the person they love, try to get home and process everything. They would have to argue with a school administration that their loved one has potential but just learns differently. The sad part is, this not even remotely half of what it means to be part of "That Family".

 For us the caregivers, it weighs very heavily on our hearts and minds when we deal with everything society throws at us. There isn't a person on this planet that wants to be subjected to ridicule on any kind of level, which is why when it is pointed out to us publicly just how different our family is to yours, why it hurts us inside when society can't accept difference and diversity.  

 It doesn't matter for most of us how much we promote and educate what is dear to our heart, we will always be "That Family". People are always going to comment and or stare. We will always have that sympathetic vibe following us. But in reality, we don't sympathy or the God will only give you what you can handle talk. In reality, what we want, is not to be "That Family". We want to be accepted like every other family that has children. A family that looks like they love each other.

I know that there are people who are kind and respectful when it comes to special needs. Wading through the comments and stares, we find those decent human beings. It's those people who take the hurt out of our hearts. They remind us that not everyone is judgmental.

So I guess if we are going to be "That Family", the ones who love each other or the one that shows the world that even though there are differences, we still accept each other for who we are or the one that operates as a family unit in the best way we know how, then so be it. At the end of the day, when it is quiet, we can lament on what it means to take what life throws at us and handle it the best way we know how. We know it isn't going to be easy, life isn't easy. Its hard work but at least we have each other to get through the toughest of times. And that is what it means to be part of "That Family".

Tuesday, August 4, 2015

The lifestyle you ordered is currently unavailable, have this one instead.

I recently saw a meme the other day that read:

" The lifestyle you wanted is permanently on hold" or something to that effect.

It came from one of those pages that have the witty quotes. As most things that I come across, it got me thinking. Remember that time, way back when, when you were young,trying to find yourself and daydreaming  about the life you wanted to have. You know the one. The one where you marry your crush, you have a fantastic job that you love and your children are the envy of all your friends? The highly unrealistic one? Yup that one. It looks good inside your head, but the reality of it is just a dream. You can have certain aspects of it, but it isn't always going to work out according to how you plan it, as life goes, there will always be things that will happen to you that will change whatever perception you had on your lifestyle.

Like most people, I, too had my own dream of who I was going to be when I grew up. What I wanted out of life. The naive me was a person who tried her best to be a good person. A decent person. A person that wanted someone to accept her and love her. A person that wanted to have children. I had these expectations of what I thought I was going to get out of life. And boy did I sent the bar high. I think most people do and when we don't reach that bar, the element of disappointment is what drives a lot of people into depression, including myself.

I think the trick being, learning to change the things you can change and learning to accept the things you can't. They always say that life is what you make of it. In a sense there is some truth to that. I look at myself as the person to make those changes happen. Whether or not it's a change on views or things that I have to work on for my well being. Granted, it takes a lot of work to make yourself feel better about life, and life at times doesn't always work with you on help you achieve those goals. Sometimes it's what life throws at you that makes you realize what kind of person you are. It shapes you.

For myself, I never thought 20 years ago, that I would be married(to a US serviceman), a mother who has special needs children or be writing, but here I am. This wasn't the life I had envisioned for myself, but it is the life I have. Do I have some regrets? Yes. Everyone does. Everyone has those times or moments where they wished for a do-over. The older self going back and warning the younger self not to make a certain mistake. Although, when you look at it, its those mistakes and bad decisions, that made us who we are today. Learning from those mistakes and trying hard not to repeat them. Are there things that I, personally, would have done differently? Yes, but I accept that there things that have happened in my life that were beyond my control to fix or change. Its those things that have shaped the life I have now.

We all go through those days where we think to ourselves " I didn't sign up for this..". That thought always pops into my head, when it has been an extremely shitty day. Y'know the day I am talking about. That one where at least one or every child has thrown up in a place that needs to be scrubbed out, something has stopped working,you have somewhere to be and you are running late. Those days that try every ounce of patience you have. And you think to yourself.. this is not what I envisioned for myself. We all have those feelings and there is nothing shameful about having them either.

As for me, well I don't have the lifestyle my 20 something envisioned for herself. I have a lifestyle that has challenged me to grow as a person. I have a person who loves me for who I am and for who the person I am evolving into. I have children that teach me more about life than anything. Yeah I have had things happen that have definitely game changers to my dream, but in the long run it's those game changers that have made my lifestyle more realistic.

No I don't have the lifestyle I thought I ordered, but I do have one that has opened many doors that I didn't think I could open. And that is something I would never change, the ability change what I can and accept what I can't.