Monday, July 2, 2012

Communicating Effectively

Erin K. Burton

Communicating Effectively  
          When we enroll in school, we are immediately taught that there are three “R”’s. Reading, Writing and Arithmetic. Already, we see that communication is not correct. While yes, reading beings with an ‘r’, it is the only word that begins with the correct letter. If we listen, we still hear the same sound with the next word, ‘writing’, it does not begin with the same familiar ‘r’. Lastly, the word Arithmetic throws in an entirely different complication with the three ‘r’’s that we are to learn in school.  Not only does it not begin with the letter r, it forces us to listen closely to catch the miscommunication.  We are sent to school to learn how to communicate in the real world through various methods, however we are exposed to even more forms of communication when we are in the ‘real world’.
            Walking through the grocery store aisles we are bombarded with communication methods.  We hear people engaged in individual conversations, sometimes in multiple different languages. We see flashy labels on cans, boxes and jars of items that the store wants us to buy.  If we pay attention, we see that even the way items are placed on shelves or displays; we see that the stores often really want us to pay attention to those items.  Often times, we’ll hear jingles playing over the loud speakers that put the thoughts in our heads that we need that particular item immediately.
            In order to communicate effectively, I believe that people must have the ability to pay attention to the forms of communication that are being used around them.  During an individual conversation at the grocery store, we must be able to focus on the words being used, the intention and mannerisms that the individual is using and still maintain constant supervision of our surroundings.  The person that we are talking with must also do the same thing.   The words that are being used are one way to communicate effectively and we must command a working knowledge of whatever words we choose to use in our sentences.
 Non-verbal communication is just as important as verbal communication. The mannerisms, gestures or body language that we see and utilize during our conversations are another form of communication.  We may hear the individual saying - “yes, I would love to come over for dinner on Tuesday night” however, if they are standing there shaking their head no or moving backwards, we may interpret that they do not want to come over for dinner.      

Friday, May 27, 2011

End of another school year

At the end of this school year, after the graduations, ceremonies and awards - my girls will be another "year" older. It's really weird to think about that!  Bella will be graduating into Kindergarten! AHH!!! Seriously - I'm FREAKING OUT! When did that happen?  Just the past few weeks we had her "transition" IEP meeting and honestly - I cried.  Not because they were "covering" things that I didn't know or they were criticizing things.  They weren't telling me that she was drowning or struggling or had concerns - it was actually the opposite.  They told me that Bella is a joy and smart and funny. They don't have alot of concerns for her and they all think she will do VERY well in kindergarten. They increased her "pull out" services to help her with her handwriting and some other very basic OT things - but other than that - she's great!  But my BABY is going into KINDERGARTEN!! OMG?!! I'm gonna need drugs for her "graduation".

And BEAR!! My heart - my baby! (And I know that sounds bad - but Bear has been a mama's girl since birth and she's MY baby!) She's graduating into 1st grade. I am having a hard time with this and I won't lie. It is breaking my heart to think of her growing up and moving on into 1st grade!  I don't want her to grow up! I want her to stay little and be safe and protected and everything. The older she gets the harder it's going to be for me to protect her and keep her safe. And yes - i know it's just 1st grade but still!!! At her yearly review meeting they kept pointing out how well she's doing and how compassionate she is. How she's reading above grade level and how much she loves her classmates and takes alot of pride in her art projects. They're going to have a little "cap and gown" graduation ceremony and really - they're getting little diploma's!! I'm really, truly going to cry my eyes out when she has her graduation!

My biggest baby - Roo is going into 3rd (THIRD) grade!! AGGHH!! (insert frantically panicky mother here!)  I won't even get into her transition meeting because it was horribly uncoordinated and too long - but needless to say her 3rd grade year is going to be stressful for this mama and daddy. With E.O.G. tests (if they don't pass their end of grade asssesments - they don't move onto the next year) and faster paced classes - it's going to be interesting.  BUT - for this year - my girl did so great! She's getting an award for her A.R. accomplishments (accelerated reader) and having a breakfast with the school folks (and parents) to recognize her overall accomplishments. I'm one proud mama!  I'm not sure if her class is having a graduation yet or not - but she's on her end of year field trip to the Aquarium today. Here's hoping that she's having alot of fun and enjoying her day!

So I'll post some pictures after all this is done and said. I'm so proud of my girls and excited for them to have a summer vacation. This mama is excited to not have to iron uniforms and rush out the doors with them every morning!

Tuesday, May 3, 2011

the knowing

So life has been pretty crazy lately and I've had a hard time figuring out how to keep telling our story from the past to the present. It's not that I don't want to share the details or that I find it too "close to the bone". It's more that I really don't remember alot of the day to day that we've gone through. There are some things that I vividly remember down to the color shirts the girls wore or the way the phone rang. I remember walking through the new classroom that the girls were transferred to and the absolute rage that I had when they continued to make changes to the classroom after the kids started.

I remember the "graduation" that they had when they finished the school year. I remember the smiles the girls had when they got their certificates for finishing the school year and the relief I felt when the school board said they would be replacing the "lead teacher" with a more qualified and compassionate woman. I remember all of that crystal clear. But I don't remember noticing the differences that the girls had as they grew. I don't remember the moments when things clicked and I "knew" that something was wrong. I do remember the day that Bella stuck her hand in a floorboard heater and gave herself a second degree burn - but she didn't cry.

I remember the alarm bells going off in my head that my "baby" wasn't ok. I remember breaking down in tears on the living room floor. I remember shaking and sobbing and feeling like I was going to vomit. I remember the feeling of not being able to breathe and wanting my heart to stop racing. I remember knowing that those feelings weren't going to get any better. I remember sobbing at all those "not going to happen" thoughts that were running through my mind and my heart.

Even today, after another appointment with the girls' psychiatrist and discussions about changing medications and "stumping" the doctor with behaviors and indicators. I have gotten used to hearing that we "stumped" the doctor and that she would "talk to a few other doctors" to get some "ideas" on what we can do to make Bear stop eating her fingers. Or what we can do to get Bella to stop running into the street with no care of oncoming traffic. And it's so frustrating to sit there and spout off all of the things that we've already done to try and help them. All of the sage ideas that are well meaning but unsuccessful.

To have to recount all the nights, weeks, months of "odd behaviors" or "problem behaviors" or "typical disorder" behaviors. And while I know that the doctors need to know what they girls have done over the years  and that in some way I'm sure it's beneficial for them to know - it breaks my heart to remember my daughters chewing on furniture like dogs. And the hours upon hours of scraping dried poop off the walls and furniture. And the hours of washing dried poop out of sheets and blankets and pillows. Throwing out stuffed animals that just couldn't be cleaned.

I know that I'm not alone in all this. I know there are countless other parents that have gone through this. I know that the "lost memories" are still in my head somewhere and that they'll come back at some point. I know they'll flash into my head someday and I'll smile when I can remember my daughters first steps and the first time they fed themselves.

Knowing all this now - doesn't make the "not going to happens" and lost memories any easier to live with. 

Monday, March 28, 2011!

Change and military life are supposed to go hand in hand right? Well, not so much in our family. I expected us to move at some point to another base in another state if not another country. And we were fortunate (sort of) not to have to do that during my husbands' military career. He deployed and trained and did his job day in and day out. Shortly before Ella's first birthday, he deployed again - this time to Incirlik Air Base in Turkey. This time for 6 months. That 6 months was some of the worst and best in my life. I learned very quickly what I was actually capable of handling. I moved us into a house that I fell in love with. 3 bedrooms, 2 bathrooms with a HUGE backyard and terrific neighbors. The girls were happy in that house. I was happy in that house.

A few doors down from our house I met an amazing lady who was on the journey that I was on. She had 3 children as well. Her middle child was also diagnosed on the spectrum and while we weren't able to talk as much as we wanted to, we shared alot of glances and brief conversations that meant more to me than she'll ever know. And, we ended up being allies together when the schools decided to uproot our children and switch schools on them.  Neither of us were prepared or eager for that change. There were many caffeine fueled conversations, discussions, pro/con lists and shared emails about that misadventure.

Given that we lived on military bases, the school populations were always changing. And, given that our children were bused from one military base to another, our children were considered "Out of Boundary" students. Even though our base didn't offer the early intervention preschools that our kids needed, we were still considered "out of boundary". At the time that they announced they were making this change, neither myself or my friends were ready to tackle this argument. We didn't understand what the school administrators were thinking! Uprooting these children, mid-semester to a new school with teachers they didn't know, to a classroom without adequate facilities - a virtual nightmare for us parents.

And it was a NIGHTMARE! The school playground wasn't fenced in, the classroom didn't have a bathroom, the teacher wasn't trained to handle special kids, the school wasn't equipped, the staff wasn't prepared to have these high need children in their school. All of us were truly terrified of what our children were going to walk into. The school did do what it could, and that was great, but there wasn't anything that they could do that would have made this transition any easier or acceptable to me. I stepped up as did several other parents to go into the classroom to help get it ready for our children. Childproofing things, trying to fix things up so that it would be as adaptable as possible. That wasn't going to be easy. The classroom was located in the 4th and 5th grade building. The school had never had a classroom full of high-need preschool age children.

The teaching staff in that classroom truly wanted to make it work out in that classroom. Most understood that this transition was going to be beyond challenging and terrifying for these kids. I was angry that the school district felt it was appropriate to reshuffle our already fragile kids around like a deck of cards. I won't forget the look on Maggie's face the day that she didn't go to her "school" and she went to "the scary school". The big kids were there and the school had too many different buildings. The whole situation was different and scary for her. Thankfully, she did have one familiar face with her. My friend from down the street, her middle child was in the same class with her.

The first few weeks of the class was terrible. The "lead teacher" became the assistant teacher when she realized she wasn't capable of teaching the class. One of the assistant teachers took over and she was amazing. Lisa was a remarkable teacher and the perfect fit for the kids in the class. In March of 2009, Ella started preschool in the same class as Maggie. The two of them were inseparable. With Lisa as the lead teacher, Cheryl and Jeanie as terrific assistants and a safe and functioning classroom - Maggie and Ella were doing great.

At the end of that academic year, Riley "Graduated" kindergarten and Maggie and Ella finished their preschool year with another year of preschool yet to go. That summer we moved into a 4 bedroom house. I wasn't as in love with it as I was our 3bedroom house, but I had another great neighbor across the street and the girls each had their own rooms. (Which was MUCH needed since Maggie and Ella were together 24/7) That upcoming year was going to be really challenging. In 2009-2010, our entire lives would turn upside down.

Thursday, March 24, 2011

Takes a village

A phrase I got used to hearing alot over the years was "let's just wait and see". Telling that to a mother who wanted nothing more than to give her children everything and anything they needed to achieve their fullest potential was one of the most frustrating things I had ever been through. I hated hearing that with a passion. I'm not a wait and see mother. Did I understand that some "diagnosis" couldn't be made until the girls were older - absolutely! I understood that because I heard it often enough. But it didn't make it any easier to wait.

For weeks upon weeks and months upon months, I would load the girls up in the van and drive almost 45minutes away to therapy in Puyallup Washington. It could have been 3 hours away and I still would have made that drive on a daily basis. The therapists the girls had at Children's Therapy Unit made it worth it time and time again. Over the 4 years that the girls were seen there - we met truly amazing individuals who loved my daughters as though they were their own.  For roughly 8 hours a week, the girls were treated there and given undivided attention to help them achieve their goals. If the girls were sick, they called to see how they were. If the girls had a bad day, they were there helping them and loving them. When the girls met a goal or had a wonderful session - they celebrated right along with us.

The people at Children's Therapy Unit truly were the best of the best (in my opinion). Not only did CTU offer OT, PT, Speech and Psychiatry in one building - they also had social skills groups, family support, orthotics - truly EVERYTHING in one place. It was a gift to go there. When the girls would go off with their therapists, I had an opportunity to talk with other parents who were in similar situations. When we were there for hours at a time when one girl had therapy, and the others didn't start for an hour there were things for the kids to do. Books to read, games to play, other kids to play with - in a SAFE place where I didn't have to worry about the "weird looks" or ignorance of other parents. Any other parent that has gone through the "unknowns" knows how truly amazing it was to have a place like that.

Shortly after we started therapies at CTU - I was introduced to another form of hell on earth. IEP's. (Individualized Education Plans)  Don't get me wrong - I appreciate the intent of what IEP's are supposed to do. But the meetings and evaluations and egos that get involved make the process exhausting. Throughout the time that we were in Washington, I had another wonderful person come into my life, and the lives of my daughters. She was the Speech and Language Pathologist that was in charge of my girls IEP's and also saw the girls for speech services.  Angela was probably one of my closest friends in Washington. As the girls aged into the system of public education and EC Preschool, Angela opened her arms even more and took over their IEP's and therapies.

It started with Riley in preschool starting in December of 2005. She had just turned 3 and to say that I was scared would be putting it mildly. I don't remember alot of the first year of her in preschool - but I do remember being nervous and not wanting her to ride the bus. She wasn't going to the school on base because they didn't have the EC Preschool, so she would have been bused to the army base and go to school there. Yeah - that wasn't going to happen. So, eventually I pulled her from the army base school and sent her to a preschool off base and she was really happy there. When it was time for Maggie to start preschool, I sent her to that school as well.

When it was time for Riley to start kindergarten, things became harder. In Washington they didn't have "all day kindergarten". We started Riley at the school on the army base because we were told that that would be a better situation for her. We quickly discovered that we were very wrong. (Damn hindsight!) So, we transferred Riley to the elementary school on base where she quickly started to drown so we tried another class and eventually she settled in and finished out her Kindergarten year. Angela walked just about all of that with me and tried to help me figure out a good balance for Riley.  In addition to attending school Riley also had her therapies at CTU every week. Which now, it doesn't seem like it was that much, but at the time, it was.

When Riley was starting 1st grade, it was time to start Maggie in her EC Preschool. Thankfully Angela was there with me through that as well. It started off pretty well, Maggie was going to be in the same class that Riley had been in. I was comfortable with the teacher and knew that Maggie would be happy there. Riley was excited about starting her 1st grade year and going to school all day like the "big kids". The first day of school was great for Riley. She was really excited and quickly made a few friends.  Maggie started in her class and was happy too. I was really surprised to see how they transitioned and how comfortable they both seemed.

Part of me was waiting for the other shoe to drop. Things were going too well and I couldn't shake that feeling of "something bad is coming." I wish I hadn't been right. About half way through the first quarter of school - we got a phone call that the school district was going to start an EC Preschool on our base and they were going to transfer all the "off army base" kids to that school. Here we are so content and happy that Maggie is comfortable and happy to go to school and excited to see her friends everyday. And now - the school district wants to change all that? Insert mother rage right here!!!

Wednesday, March 23, 2011

Hurry up and wait!

One of the many things you never expect when you're a parent is to have to wait to find out what's wrong with your child. Most of the time it's pretty simple when something is wrong. Ear infection, strep throat, sinus infection, bronchitis, broken arm, sprained ankle - all relatively simple problems that you get an answer to pretty quickly. Even when a woman thinks she's pregnant - it's pretty simple. Pee on a stick or go to the doctor for a blood test or a glorified pee stick. At most you have to wait a few hours and you know.

When something isn't as simple - the waiting is terrible. I admit - I am one of the least patient women on the planet. If something is wrong with my child - I want to know what it is, what is the plan of action and what do I need to do? That does not happen when it comes to "developmental concerns." There aren't any simple answers. All the paperwork in the world that is filled out still doesn't bring a simple answer. When the appointments finally came for the girls to see the developmental pediatrician - I did expect to walk out with an idea of what was wrong. I expected these long awaited appointments to yield some form of an answer. And I was wrong. WAY wrong.

After waiting for what seemed to be hours, all three of the girls get called back to see the "developmental specialist".  I half expected someone that looked like Dr. Freud or Dr. Spock even to come into the room with this arrogant personality and sense of self assurance that would make me instanteously better about the situation. I expected someone to walk in and already have an idea of what was wrong because of the copious amounts of paperwork I filled out would have given some answers. Nope. Wrong again.  The doctor that walked in was young, intelligent looking but young. And of course he wasn't the actual "specialist" - he was the "fellow" (aka glorified student that's still learning and has to run everything by someone else who then presents to the actual specialists) but he was a doctor so that made me feel a little better. (not by much) 

He had a name that made me want to laugh because he obviously wasn't a Flake, but he name was Flake. He was the first of several developmental pediatricians that the girls would see. But, he did make me feel somewhat better because he had alot of patience and the girls all seemed to like him. He asked ALOT of questions, took a very detailed family history and then let me know what his actual job was. Which, at the time, didn't seem all that different from a regular pediatrician. But, he had one power that I had yet to hear of and would later find out to be a golden ticket to a magical service that I would need - alot. He had the power of the "referral". Referral would become something that I loved and hated all at the same time. Without referrals, the girls didn't get what they needed. Without the right referrals - the girls didn't get what they needed. Without the perfectly worded, sent to the right people, dated with the right dates - the girls didn't get what they needed. And Dr.Flake was the ultimate provider of those referrals.

After 4 hours in a small exam room being asked lots and lots of questions and feeling like anything I ate, drank or smelled was wrong - we were done with that appointment. I left feeling overwhelmed, confused and insufficient. The girls didn't have a definite diagnosis. I didn't have any answers. I didn't know what to do or which way to turn. I had a 3 pieces of paper with lists of appointments and dates on them. 1 piece of paper for each of my girls with appointments for all sorts of tests and exams and lab orders. How could their little bodies handle all of those tests. Even though they weren't alot by any means, how could they handle all of it? Why did they need them all? What did Dr. Flake plan on getting from all of these tests? What did he think was wrong with my kids?

I remember sitting in that room before we left asking him what he thought was wrong with my girls. He tried to give me the "vague" answer that was completely nonspecific and didn't give me any direction to look in. I told him that I wouldn't hold him to anything, but I needed to know what it wasn't so I could start to accept what it could be. He spouted off all these things that it "couldn't be" and I remember looking him in the eyes and saying "well that's great, but what could it be?" He talked about "Borderline Mental Retardation", "Pervasive Developmental Disorders" and "Non-Specific Global Developmental Delays". He talked about how Occupational, Speech and Physical Therapies could help the girls gain some of the skills that they were lacking and to help them catch up to their "same age peers". (Which he had put referrals in for evaluations and therapy sessions)

I still don't remember leaving that appointment. I don't remember driving home. I don't remember much about the rest of that day. I do remember looking at the 3 sheets of paper seeing dates and times and places that I had to get my girls to in order to find out what was wrong with them. I remember seeing my girls with different wires and leads attached to them looking for seizure activity. I remember holding them down as the doctors and nurses took tubes upon tubes of blood from them looking for "genetic defects". I remember answering the same questions over and over and over and over again at evaluations and therapy appointments.

I remember sitting in so many different rooms hearing where my children were "delayed" or "grossly delayed" in areas of their development that these therapies would "help them reach their therapy goals and developmental milestones". What I remember hearing more than anything though was that in one way or another I had failed. It didn't matter how many different times the therapists or doctors would tell me that "it's not your fault" or "there's nothing you did that caused this" or "you've done everything right, you shouldn't feel guilty" or my all time favorite "you've caught this early, they'll catch up in no time." None of that mattered. All I knew was that these little girls were given to me to care for, love and raise to be healthy, beautiful women. And for one reason or another - there was something wrong with them that was preventing that from happening.

What that was, I still didn't know. No one seemed to be able to willing to tell me what that was. What they did tell me was that it was going to be awhile before we knew what "it" was exactly. That's all anyone seemed to be able to tell me.

Tuesday, March 22, 2011

Insert Jeopardy Music Here

24 years old and I'm supposed to know what to do? There isn't a handbook for this. There's no parenting class that prepares you for the reality of Early Intervention Services.  (And I had NEVER heard of that before. Sure, there was a therapist that was coming to the house to help Riley before all this came into the picture - but it never occurred to me that there was a name for it.) And as wonderful as the military is - there isn't a specialist on staff anywhere that can help navigate through the path that was coming at me like a freight train.

Somehow through all the panic running through my head, I found the number to a woman that would become my saving grace. She was our "Family Resources Coordinator" for the county that we lived in. April truly became a lifesaver for me. I had met her when we originally moved to Washington State back in July of 2004. Before Maggie was born and before any of the "delays" became a reality. She had originally set us up with the in home therapist that signed a spot light on all of the girls delays. I hadn't talked with her since we set up the in home services for Riley. And when everything was going on with my pregnancy with Ella, it didn't occur to me that April might have been able to help. But I was so wrong!

After I called her, she came out to the house and set up evaluations for all of the girls to have. April was wonderful. She had a way of being very direct with the areas of concern without it coming across as though anything was "wrong". She gave me lots of websites to look at and made things seem manageable. And everytime she came, it felt like a friend was coming to visit. If something came up that I didn't know what to do with, she had the answer without it seeming as though I had missed the obvious. When things started to come into focus a bit, April broke the news to me that the situations with the girls may not be temporary. I didn't know what to do with that. April did.

She called the girls pediatrician and sent over all the records and test results. When the doctor called, for some reason, it just came crashing down. The doctor said that I needed to bring the girls to the army hospital to see the developmental pediatrician. I don't know why, because at the time I had no clue what a developmental peditrican was - but I was terrified. It all felt so official and out of my hands. I felt like I had no say in what was going to happen to my kids. I don't know if it was because it was suddenly "military" and not civilian. April didn't work with the military healthcare system. She worked for the county. April couldn't do anything for us when we were seeing the military providers. Of course she could still come to the house and help me navigate the homecare visits that the girls had - but she couldn't make the military doctors do anything or change anything.

I didn't understand why this suddenly went from my happy "April visits" where things were manageable - to the military world. The military world wasn't as friendly. It wasn't as kind and gentle. It was much harsher and black and white. There wasn't room for any indecision or questioning. I understood that we were at a point where the girls needed more than home care visits and developmental assessments. They needed more medical testing and possibly more than that. They needed more intervention than April could provide. It felt like my only ally in this was being taken away. April was the first "friend" I had made when we moved from North Carolina to Washington. She was the only person that I could talk to about the fears and worries I had for the girls. I did have other "friends" in my life that were there for me and that I knew loved the girls, but I didn't know how to talk to anyone but April about it all.

A few days after the appointments with Developmental Pediatrics were scheduled, I was thrown in to an entire new version of hell known as "paperwork". I truly believe that the amount of paperwork that is involved with developmental delays in children is meant as a diversion so that parents don't have the time to ask questions. With all 3 of the girls requiring mountains of paperwork, I think I need to take partial responsibility for the destruction of the rainforests. After roughly 8 hours of paperwork, records requests and releases and 6 weeks of waiting - I pushed a 2 seater stroller with Riley and Maggie in it, Ella in a baby sling and a diaper bag that was probably big enough to fit all 3 girls in it with room to spare into the developmental pediatric clinic.