Wednesday, April 29, 2015

Finding Courage within herself..

As a parent there is nothing more heartwarming than seeing your children overcome something that has given your child fear. A couple of  weekends ago, my daughter, who has autism, had the privilege of attending a Girl Scout Encampment.For most girl scouts, camping isn't such a big deal, but for us, this was a huge step for my daughter, as she had never been overnight camping with her brownie troop before. Before we left, I had braced myself with the possibility that this weekend might either be a good experience or a not so good experience, but whatever the outcome, I was to be proud of my daughter for wanting to step out of her comfort zone and try something new. This weekend, my daughter blew me away as well as the support and love her troop had for her.

This weekend was a weekend of conquering fears. Not just for her, but for myself. In a way I was afraid of how she would do and if and when we had a meltdown, just how she was going to be seen by the rest of the girls.I will state that this girl proved me wrong. And it was one of those times, that I liked being proved wrong. Not only did she not have a meltdown, but when she knew herself that she needed to clock out for a while, she did it on her own terms. Calmly and collectively. And when her troop, saw that she was getting overwhelmed, they helped her out. For an autistic, that normally has a hard time with social cues and relation to certain situations, this little girl proved not only to world, but to herself, that she can among her peers, without worrying. With all that being said, there were times, that she doubted herself, thinking that she couldn't so something, because of this fear she had within herself. As I saw the battle going on within her head, of whether or not to participate or not, I stood back and let her figure it out for herself. I think that was the best thing I could have done for her.

During camp, we had work stations that we went to as a troop. Rock Climbing, Quilting, Kayaking and Archery.Our Saturday was shaping up to be busy day. I already knew that my daughter was a bit discombobulated, with her routine being out of whack. Our first station was rock climbing. When we approached the wall, I could see in my daughter's eyes a sense of dread. Her first response was "No, Momma, No" I told her that, if she didn't want to do it, that was fine, but we will stand and support our troopmates as they climbed the wall. She sat back and watched all her troopmates get suited up to climb. Every so often she would wander over to the wall and look up and then shy away from it. She watched as girl after girl climbed up and rang the bell at the top of wall. But it wasn't until the instructor, who was this woman, that drove a Harley into camp and looked as though she has enjoyed every facet life could offer,  came over to ask if my daughter wanted to climb. I explained that she was scared and that we were a little out of our norm. The instructor got down to my daughter's level and told her, it was ok to be scared and that if she just wanted to touch the wall, that would be fine. In that spit second, my daughter, who was tucked up into my hip, decided, that Yes, in fact she wanted to try climbing the wall. So the instructor suited her up and put the helmet on my daughter's head. As my daughter got closer to the wall, I could see her shaking a little, but before I could step in, the instructor got down on her knee and quietly told my daughter, " Its ok. If you just want to stand next to the wall, its ok. If you want to touch the wall, its ok. And if you want to climb the wall, its ok. Why? Because all of those things are things you didn't do yesterday and things you can say you did today." Internally, my heart was singing. Watching this rough, spitfire of a woman, talking to my daughter in a way that was gentle and supporting. My daughter tells her to hook her up to the belaying line, and as my daughter took the first step up, she just kept on going. As her other troopmates,who where standing below her, cheering her on. Supporting her. She didn't get up to the top to ring the bell, but she did get half up the wall and then came down. When her feet hit the ground with all of the grace of a cat, the instructor unhooked the belaying line and gave my daughter a big hug. She told my daughter, that no matter how many girls come to climb the wall, my daughter was going to be her rockstar for the day. As my daughter went off to take her gear off, I took the instructor aside, and told just how much this meant her and myself. I explained that my daughter was autistic. And her reply was this. "Don't ever let that stop her from things." I could not stop the tears from escaping from my eyes.

For the rest of the day, it didn't matter what else we had going on. Both my daughter and I felt that we could conquer anything. She went on to sew a quilting square, just like her Amah. She tried her hand at Kayaking and Archery, without an element of fear. At the end of the day, she even wanted to sit at a campfire for as long as she could bear it, with her troopmates. We came back from this camping trip, feeling renewed. I think she surprised herself, when she put her own guard down, and she surprised me in doing just that. Both us came back from Encampment, learning a little bit more about each other, thanks the support and kindness of other people, but more so for because of both us putting aside the fear we had going into this adventure.

Sunday, April 26, 2015

One Diagnosis, Two Diagnoses, Three Diagnoses, FOUR!

There is a point when you are sitting in a doctor's office, listening to them go over test results that makes you think that you what is afflicting your child is a amoeba of sorts. One diagnosis turns into two, then three and then four.. and it just keeps on going. Then finally the doctor will have to write down the list of things that need attention. I came to this realization when I was sitting at my son's IEP meeting last month and it hit me, as soon as they had changed his IEP from Autism to Multiple diagnoses. Seeing it there printed, floored me.

As most of us parents in the Autism Community know, there are several things that are put on the table when we get the Autism diagnosis. Things like Global Delay, Expressive and Receptive Speech Delay, Low muscle tone.. I could go on but you all understand what I am talking about. And with all of those comes the amount of services this person will need to help them along. Special Educations, OT,PT, Speech and Language and ABA. A lot of these are just within the Autism spectrum. Which makes Autism look like an amoeba of a diagnosis. So much to remember. So what happens when splits into more little amoebas? You have entered the realm of multiple diagnoses.

Our experiences are with a genetic disorder, while others might not be. Currently, it is a maze just to navigate through the different specialists that need to be seen. Not to mention the individual testing that each of those specialists want to do. Now the game just seems more complex. More ducks that need to lined up for things to happen. I often go back to when it was just simpler with just the Pediatric Developmental, ABA therapist and the Speech therapist. Now that our team has grown, I am somewhat lost without my whiteboard flow chart of doctors and specialists. How to see when and where to at what time. At the beginning of all this, I will admit that I was lost. Lost like the Land of the Lost, with the sleestaks and everything. But in the past couple of months, things started to come together, slowly, but they are getting there.

I am finding though, that multiple diagnoses throw our insurance for the same loop we first got thrown into. The current frustration is referrals. And for the insurance to try and keep up with amount of Doctors ordering things is like watching a toddler trying to do a 100 piece puzzle.  Trying to put what where and  what authorization code goes to who. As a parent, who just wants things to get done, so we can move on, it is extremely frustrating when people don't want to do the job they are supposed to do. I wasn't the one that took the course in insurance codes and accounting. I am just the person who has a loved one that needs medical care and attention. I can't tell you how many times I have been asked, "Well which diagnosis does he fall under?" Um.. Well.. All of them. I guess he won the lottery. But this isn't a pick one out of the hat kind of deal. This is a person. A breathing, functional person that requires just a little bit more attention than your average person. A person who just happens to have multiple things going on within in them.

To say that living with someone that has multiple things going on is easy would be a lie. Its a challenge and that is the truth. While my son is still young, trying to get him as much help as we possibly can, is our goal. We want him to be able to function as best he can when he hits adulthood, as he will be an adult with multiple diagnoses. An adult with multiple disabilities.

So even though it seems daunting right now when they are children, in the long run, what you are setting now, will benefit them when they are grown up. A system that will help them navigate through their multiple diagnoses.

Tuesday, April 21, 2015

How the Girl Scouts helped my Autistic Daughter.

This past weekend my daughter and I participated in our local Girl Scout Encampment. It was a weekend full of activities for our local troops and a chance to meet other girls outside our own troop. For us, it was the first time my daughter, who has autism had ever been camping overnight with her troop. She has only been with her troop for a short while, but the group of girls that are in this troop are ones that have gone to school with my daughter. So they are aware in their own way, that she is a special little girl. They don't treat her any different and they treated her with the same amount of respect as they would any other girl within the troop. I wasn't going to write about this, but listening to my daughter talk non stop about her weekend with others who didn't go, it made me realize just how much Girl Scouts had impacted her and our lives.

Anyone who knows my daughter, knows that its the simple things that make her smile. Yes, she has her quirks, but for the most part she is a very simple and easy going child. She is also a child that so desperately wants to be part of something. Included in activities. It could be anything from playing with dolls to being invited to a birthday party. For the longest time we tried to find something that would be beneficial to her and her nature. As she looks at the things that the other girls do, like dancing and cheer leading, often wants to do the same. As her parent, I know what her limits are and as much as I don't want her to excluded from things or not try something, I know that there are certain venues, that are either just too competitive for her or just too much going on. So I figured that Girl Scouts was a good way to go, as I had seen my eldest do well with the Boy Scouts. I wanted something that would help her out socially but also give her a sense of friendship and kinship. It also gave her something to feel accomplished about, when getting badges.

Now I get that not all troops are created equal. With everything there is the good, the bad and the very bad. We are very fortunate to have a troop, that is very accepting. They recognize that my daughter has some difficulties with certain things, but with that they help her get through those tougher moments. And as a parent, watching this makes my heart velklempt a little. For any parent of a special needs child, all we want is for our children to be respected and accepted, regardless of what makes our child special needs. In an age where the number of bullying cases are on the raise, it is nice to have children rally around those who need an extra bit of love and support. It is an important lesson I think for children to be around others, who view the world differently, as everyone can learn something from each other.

During our weekend at the Encampment, my daughter stepped out of her comfort zone. Yeah, we had some times where there was an overload of the senses for her. But over all, this weekend was the weekend of firsts for her. She did activities, that I, as a parent, couldn't even imagine her doing. It was a huge step for her, for which she handled herself remarkably well. From Rock Climbing to learning how to shoot a bow properly. We went from baby steps to giant steps. She learned how to work as a team to get something done, from cooking breakfast to cleaning up our campsite. Social skills I don't think she realized she was learning.

Now that my husband is home from deployment, I can be more active with her, just as my mother was when I was in Girl Guides( That is our Girl Scouts, in Canada). Out of all the stuff I did back in my youth, Girl Guides, was the one thing that I felt accomplished in and have the fondest memories in.  I loved the outdoors. I loved the camping. I loved the camaraderie of my troop.  I want that for my daughter. I want her to have that feeling and have the fond memories that she will remember.  There is something to be said about the sense of kinship of a Girl Scout Troop.

So for my autistic little girl, Girl Scouts has made a positive impact on her. In a way, it has helped her come out of her bubble. Let her experience things, that she wouldn't normally do and show her that there are people out there that, just because she has something different from them, they will still respect her and support her in the best way they can. They see her for who she is, and still want to be her friend, which at the end of the day, for her is the most important thing.

Me: What was your favorite thing about this weekend?

Little Miss: Just being with my friends.

Need I say more?

Wednesday, April 15, 2015

The Power of a Word..Why the R-word needs go.

Every word within the English language has a meaning and a purpose. Whether it be a word that describes, a word that pronounces or a word that is used to help make a sentence flow. Every single word has purpose. Now I am not going to sit here and give you all a lesson on pronouns, nouns, verbs and adjectives. But I am going to sit here and write about the power behind certain words within our language that have more meaning behind them, considering the power and emotion that is associated with them.

For the past couple of weeks, since Autism Acceptance Month has started, I have read and overheard different conversations concerning the word "Retard". For many people it is just a word. A word that started out as a medical term to describe the delay in something. It was more associated with the delay in mental development. Mental Retardation. Back in the age of my parents and grandparents, this was not considered an insult. It was just a way to describe the mental capacity of someone. But just as Intellectually Disabled stung for me, I am willing to bet that hearing those words back in the day stung just as much. Words and terms are always going to evolve, as society evolves and changes. The question that has to be asked is, is it right to use this word so freely? Using in the contexts of " Oh that is so retarded?" or " Don't be such a retard!" The answer lies within the special needs community. If you ask the vast majority of us, we will most strongly say that, No, its not ok to freely use the word "Retard". As it is right up there with words like " Nigger" or "Faggot" Words that you would never call someone.

 Now I get that most of the English language is built off of dialects of old. Latin, being one of them. But words have essentially evolved, just as society has. For those who still continue to use the "Nigger" to describe an African American or a "Faggot" to describe those who are homosexual, have not evolved. Its the same for those who use the word "Retard" When you start to get past the medical aspect of that word, and use it as a source of an insult or in a derogatory matter, you are making light of a disability. Poking fun of something, that someone can't help about themselves. That is hurtful.

SO while you might think that saying "Retard" isn't a big deal to you, how would you feel if someone took something that is a part of you  and something that can't be fixed or changed and made it a running joke? I bet you, that you wouldn't find it even remotely funny. As that is the trick to humans, we don't like it when our imperfections or things we can't change about ourselves are pointed out and ridiculed.When it comes down it, your self esteem gets slapped. And you hurt. So why is it any different for those who do have a disability they can't help having?

In some of the conversations, that I have had to hear on this subject, the main reasoning for not stopping the use of words that hurt, is this

" Only you can put the power into the words and get offended by it"

There is some truth to that. Yeah you are right. A person can personally take offense to the use of certain words. But the real power is the emotion behind the word and the person saying it. I can choose to ignore insults towards my children, but I can always choose to take a stand against the power that is propelling that word.  So when a person uses the word "Retard" in front of me, it makes me wonder if it is ignorance or if that person just plain forgot. But people wouldn't forget with any of the other words that are derogatory. So with the social attitudes changing in regards to words, so should people.

I guess what I am asking is this, be aware of the choice of words. I know that it seems you can't talk about the wind changing direction without someone getting offended. But here's the deal. If you don't mean it, then don't say it. If you know it is not a nice word, don't use it. Because I will not feel sorry for those who will get an earful or more so from those who have to live with the stigma that "Retard" carries, for the rest of their lives.

Friday, April 3, 2015

50 Shades of Blue

Every year most of us autism families gear up for the month of April for the so called "Light it Blue" campaign, in order to let the world know that we are loud and proud of our autistic family members. The blue light bulbs come out, blue puzzle pieces everywhere, from nails to bumper stickers. And if that is your thing, than mazel. But for a lot of us, we are somewhat drowning in the sea of 50 shades of blue. Its not to say that we don't want to promote Autism Awareness and or Acceptance, we do. We just want to do it in our own way.

With Autism being more and more relevant in our society, I understand the need to educate and accept. But I think the trick to it all is learning how to co-exist with people who don't fit into your brand of what normal is. And for us parents and caregivers, it is an ongoing battle to break people of this thought process and the misconceptions of what Autism is. Which is why in the beginning, Autism Speaks started the whole "Light it up Blue" campaign. Which when it started, the concept of it was great. But through the years and the evolution of what this campaign was meant to be, has since lost it's way. Autism Speaks, for the most part, tried in a very corporate way, to get education out there for the general public to understand what Autism is, while losing the humanity of what autism is. In lament terms, its all about making money. Now, don't get me wrong, when we got our first diagnosis, AS was great with the "First 100 Days" binder they sent out. It was a perfect way for newly anointed Autism Parents, to educate themselves for what is going to be coming down the road for both them and their children. It was almost like the map they give when you enter an amusement parks. Y'know the ones that give you a little description of each ride, where the bathrooms are and the food court is.But for me, that was all it was. And the more I learned about what AS was about, the more it seem like a company or a brand name, rather that a source of support. But that is just me.

When I look back through the years since our first diagnosis, I remember what got us through things. What helped and what didn't. The snappy come backs to the ignorant and uneducated remarks. And I will admit that, at first I was all about lighting the house up blue, so blue that smurfs would get jealous over the blueness. And the puzzle pieces, that would make my life look like a walking Ravensburger Puzzle 3D style. As my children grew and new challenges came up, my focus for Awareness and Acceptance  during the month of April changed. People are very aware of my children when we go out into the real world. There is no denying that. There was no amount of blue or puzzle pieces out there, that was going to change how the world viewed my children. My thought was and still is, if you are eager to learn about something, experience it. Sometimes the best way to learn about something, is a hands on approach. I am not saying invite yourself to someone's house to observe what autism is like daily. But if you are curious, most of us, are willing to answer questions, just don't be an asshole about it. There are so many assumptions that people make about autism. They see a glimpse of what it is really like. There are joys and there are pains. And like everyone else, we have our good days and bad. It's in a different sphere and handled differently. Is it a somewhat demanding lifestyle, which not everyone understands, which is why we don't need judgmental assholes in our lives.

When it all comes down to it, there is more to April than just lighting up things blue or scattering puzzle pieces everywhere. If you are one of the few that know a family  with an autistic loved one or someone who has autism, the best thing you can do, is let them know that you accept them, love them and support them. Help them out when they need someone through the tough times. If we truly want the world to see exactly what Autism is, its going to take more that just 50 Shades of Blue and a whole lot of puzzle pieces.

Patience and Education.

Wednesday, April 1, 2015

The Military Puzzle Pieces...

There are two things in this house that identifies with us. One, we are a proud Military family, who supports a military member. Two, we are also an Autism Family that supports not only one child with autism but two.  With April being Autism Acceptance Month, as well as Month of the Military Child, we have cause to make society aware that we are indeed a family that celebrates and accepts both.  Now most times I state, that being a parent and supporter of children with Autism is a full time gig, guiding children who live the military lifestyle, never ends,  both aspects, well into adulthood. Both things, in retrospect need to be recognized. I know that there are quite a good number of families out there that are rowing in the same boat as I am. They have children who are on the spectrum and a loved one in the military. So the month of April for us is celebrating the Military Puzzle Piece.

Now through the sea of blue, puzzle pieces and patriotic flags and yellow ribbons, most of us military families are just trying to get through not only the autism aspect of our lives, but the military aspect of our lives. Now I don't want to sit there and say that we all have it worse off, or that we are entitled to a lot. As we are all just human beings dealing with what life has given us, in the best possible way we can.I do want to touch upon what it is like for us families that have more that just one factor going on in our lives, as there is so many of us. We all have things going on in our lives. Military or Civilian. That is something that shouldn't be ignored on either side, as you never know what battles people are fighting. Nor should the strife of either side should ever be ignored or be devalued. The military is just one facet of our lives that I can talk about, as is Autism, ADHD and Fragile X, and considering the month of April encompasses two of those facets in my life, I can write about them.

April, the Month of the Military Child, started when I discovered that I was pregnant with our first born. He was born without his father being present, which like so many other military babies. My husband missed his birth by 3 days. The trend continued with our daughter. Hers, he missed by 4 months. And well Little Man's he was actually home for, which was surprising. As I look at birth certificates, we had our children all over the place. From SC to HI. As that was really the beginning of what it means to be a military child. Having a birth certificate from a far off place. Through out the years, as my children grew and started understanding what it really meant to be a child of a service member, they started to be aware of the world around them. It was my husband's deployments, that showed the world, just how resilient my children could be. The strength that they carried through the long deployments, were what got me through them. Recently we just finished doing an unaccompanied tour. For my children, it was the longest they had ever been away from their father. For those two years, they handled themselves, through everything that was thrown at them, with honor and grace. Sure they had their moments of doubt and moments of lashing out, but they are just children. And in the end, they got through it all. They might not know it now, but in the long run, it helps them deal with what life can throw at you.

April, Autism Acceptance month, started with our first diagnosis. Our daughter. A diagnosis of any kind will change what kind of parent you are. From the summer of 2008, we were now parents of a child that had Autism. At the time, we had no idea, just how much this would impact our lives. From the very start, it was an uphill battle. Not only with schools but where we were stationed, the medical support was somewhat lacking. We had terms like ABA therapy, occupational therapy, physical therapy thrown at us, but with no help in getting these services for our daughter. At the time we were experiencing what so many before us had gone through. But also in a way, it opened doors for us. I found that there was a community of people who, with their own experiences, where there to help and support. And I have to say that I have met some pretty darn awesome people because of my child's diagnosis. So when it come down to figuring out what was going on with my youngest, I had people to help me through it.

There are times where these two aspects of our life combine. Where my military puzzle pieces make the world aware of just what it means to be a autistic military child. My unique children, don't always understand military protocol or deployments the way others would do. And even within our own military circles we still face ignorance. Whether or not it is at Command functions or trying to deal with our insurance not covering vital therapies that would be beneficial to our children. It's still there.  Case in point. When our daughter was just newly diagnosed, my husband had just finished his 6 wks Chief training. His pinning ceremony was in the morning. Our daughter had not seen her father for a bit, and just wanted to be with him. My husband, who wanted his children to be part of something that was important in his naval career, asked for them to be there. Which was fine, as they were not the only children there. But our daughter, didn't understand why she couldn't be with her father. At the time, she was non verbal, and made very loud guttural sounds. We got to the point where we had to pin my husband's anchors on. He held our daughter's hand while our eldest and I finished the task. When it was time to sit back down, our daughter was distressed at leaving her Daddy and started to have a meltdown. I sat back down with our children and tried my best to soothe her. One of the other wives, turned back to  me and promptly told me, to remove my child, as she was disrupting the ceremony for the rest. At time, I got up in tears and left. While this was a momentousness occasion in my husband's life, I could not get past what had happened. It was my first taste of ignorance when it came to autism and children. I had another Chief follow me to the parking lot to try to help the situation. But I will never forget the words and look on that other wife's face, as I tried my best to parent my child the best way I could.

SO the month of April, hold so much for us. Not only for Autism Acceptance, but also celebrating my children as military children. I have always held firm not to call them "Military Brats", as they are far from brats. They deal with what life has thrown at them, with more grace and honor than most adults. In truth, it isn't just about it being a month. It is our way of life, Both Autism and Military. Eventually, when my husband retires, the military aspect will lessen, but it will always be part of our lives. Our children will look back at being a military child and remember the lessons they learned about how to deal with life. The Autism aspect, will always be with us.

The thing to remember is that whatever aspects you have going on in your life, don't ever stop spreading awareness and acceptance, no matter what circles you live within.