Anxiety

So, the title of this is a little more for me then it is for you. My anxiety has gone through the roof lately just waiting for the other shoe to drop and scared to death for you to walk into the doors of school again next week. It pulls at me and intimidates me to hand over the control of your program, your behaviors, your life, and most of all your emotional security to another group of professionals, and ask you to trust them when I am not even sure I trust them myself.

Last week and this week you have been at a day camp at Lifetime Fitness since I have already gone back to work. Again, I took a deep breath, walked you in the door, and wished them luck before I closed the door and drove away. I was nervous though, a group of college students running a camp for an overwhelming amount of children that involves swimming, gym play, games, etc... And yet again, you shocked me and those around us. You have LOVED it. I love hearing your sweet "bye" and "see ya's" when I leave and how you run away while teasing me when I arrive to pick up hours later for you only to fall asleep within seconds of being in the car. Another milestone for you though because we all know you would not have been successful in this environment or participated at the level you are now last year.

On top of this, last Friday you spent the night away from home for the first time! I was in a wedding and so Nancy and Terry volunteered to take you for the night. Wow! The first time since you came home for you to sleep away and again, no issues. Who is this child you are becoming?? :) You never cease to amaze me!

Well, little man, the next stop is school on Monday and through all the anxiety, tears, and behaviors I know you can do it. I know you can put on your big boy pants and impress all those who do not believe. I feel that since we always try to educate and warn those of what they might see and how to handle the behaviors that we actually end up intimidating them and they lose sight of the big picture of who you are. If a group of college students can see you for the wonderful little man that you are then surely a group of professionals in the field can do the same, right? You have so much to offer and are so savey in your ways that people can't help but falling in love with you. We just need them to fall in love with you AND educate you. Hopefully I will also be able to step back, show you it is okay to trust and succeed, and we will be off to a wonderful school year. We NEED this to be a wonderful school year.

Keep on Truckin Baby
I love you
Mom

Look Out World - Here You Come

Something has changed. An emotion inside of you, a wall coming down, a sense of security, and a feeling of happiness. It is not to say that I have never seen you happy in the last year because as we know I have, but it is to say this is the longest I have seen you content and happy and honestly a sense of fullfillment. Your laugh has meaning behind it and when you are upset now it is usually for a good reason (well, at least a good reason in your mind). You are learning to communicate these emotions better and to catch yourself before you actually spiral out of control.

With this change you are taking so much more in from the world around you. You are much more attentive to what is taking place, what the expectations are, and how the world interacts with you as much as you interact with it. You realize that by changing your actions something around you changes and that if someone else changes their actions you most likely should change yours too.

This is a giant step for you and a huge growth. You have changed so much over the last year but I would honestly say that the change in you the last two months has been the most drastic. I think part of this is due to the right combination of medication (after a year of working on it) and also me being home with you for the summer. The reason does not matter though what matters is the continued progress and your love for life.

We went to Ohio again this weekend to hang out with the Speas family and you did great. We did the Ohio State Fair (an experience all within itself) - you were able to watch the pig races, milk a cow, and view a shark tank - I will need to take you to a VA fair next year so you can see the difference :)

This week you are in a speech camp that is four hours every morning and is actually at the Theuraputic Riding Center. You get to spend all morning riding the horses, grooming them, and interacting with peers at the center all while working on your speech. Now, I am not a fan of horses but they said you LOVED it. You kept petting the horse (calling it a puppy) and saying "mine." I hate to break it to you but we will not be buying a horse in the future - but.... I may consider a little more therapy through horseback riding if you continue to do well this week.

We are at a pivital moment little man. You have been home a little over a year and as I said before you have continously made progress, even through all of the behaviors, but now, across the board you are starting to pull it together across all people and all the different places we go. Your speech therapist even sent an email saying this to me last week, Linda sees it when she works with you, and Frank has just joined the team to provide additional services. Now we need to again push a little harder, raise our expectations to another level, and continue to watch in amazement. I hope the world is ready because ready or not, here you come!

Love you baby
Mom

Giggle Box

Your laughter this week has filled the room. You are happier then I have seen you in a long time these past four days and what is so ironic is that I was preparing for a rough week. We are actually at Dewey beach,arrived on Sunday and don't head out till Friday. I thought for sure you would have a tough time with the transitions, being out of normal routine, and the different structure. Well, yet again you have surprised me and we are having a wonderful time.

We have spent two days on the beach, done a little putt-putt, gone shopping for fall clothes, and the highlight of the trip so far, a pirate expedition. I had the most fun today watching you dress up as a pirate (earing, eye patch, and all) and jump right in with the other kids. We got on the boat, searched for the lost treasure, had a water fight with another pirate ship, and in the end, received your treasure. You carried your sword, treasure, and eye patch around for the rest of the day. It is these moments that I step back and marvel at the child your are becoming. The way you compensate for your weaknesses (language) and how you embrass the world around you.

To see your face light up and smile this week reminds me of your hope, your desire, and your personality. You have this little smirk and a look in your eyes that not only melts the hearts of those around you but captures who you are. It reminds me that your rough days are not you - that they are a bad mix of your emotional disability, your past, your lack of communication, and is all that has ever worked for you for so many years.

This week has been amazing for us. I know we will have many more vacations and adventures but this is one I will never forget. You have allowed yourself to relax this week, you have allowed another wall to come down, and most of all you have allowed yourself to experience happiness.

Keep on truckin baby
Love
Mom

Updated Pictures

I had professional pictures taken of you shortly after you came home and then at one year. I know I do this on occasion, but look how far you have come!

A Step In The Right Direction

We made progress today! Actually a step in the right direction with the public school system. You see Bryson, you do need to go to school again in the fall. I do not regret my decision at all to home school you and it proved to be a wise one with the progress we are seeing but come this fall, to make everyone's lives easier and hopefully provide you with some of the peer interactions, structure, and program I cannot you need to go back to kindergarten.

By no means was this an easy decision. It was such a struggle last year for the school system to understand what your needs were which is why I ultimately ended up pulling you out. Every IEP meeting was a battle, as you will see from previous journal entries, and your behaviors were spiraling out of control. You and I had both lost trust in the school system, the educators (except for your general education teacher) and we were beating our heads against a wall - you were literally doing this.

So today I walked back into a room with your team on my side and tried to keep a smile on my face and my head held high as I brought everything back to the table with the ultimate goal of you re-entering school in the fall. Much to our team's surprise, we did it. The IEP team agreed to support, accommodations, scheduling, etc, that they had never been open to before. I am sure your psychiatric diagnosis helped this cause but I do not care what the reason was as long as your needs will be met. Here is the progress we made today:

- You will receive a full day kindergarten program (in Loudoun county it is technically a half day program for the general education) five days per week

- No more then 2 people are allowed to provide your behavioral support (before you had up to 7 people providing this support with transitions every thirty minutes)

- They will support your use of the augmentative communication device (your iPad or Maestro) - this was another HUGE win for us as we had to request separate evaluations

- We also gained a few more accommodations/modifications to make your day easier

This was the first time I have left a meeting feeling as if we had come out on top. That the team had worked together and come up with accommodations that addressed your needs and after a year of fighting and playing by the books it was such a good feeling.

I know the implementation of this is a whole other story but at least we have something to hold them accountable for, we did not have to have a knock out drag out, and it is a step in the right direction.

Finally, I feel as if we are slowly getting a team and services in place, after a year, that will support you and that we do not have to keep fighting. We love our new psychiatrist, we start play therapy tomorrow, your home team is strong (thanks to Linda and Karen and Brandy) and your speech therapist is icing on the cake.

Keep on Truckin Baby
Love
Mom

Isolation

Having a special needs can be just as disabling to the parent sometimes as the child. Bryson, my dear child, you know I love you with all my heart and I cannot imagine what you have to go through everyday. What the world looks like through your eyes, what each new encounter feels like or looks like, and how you process all that is going on around you. I do not understand the tantrums half the time or the rages and often times I do not understand the tears. I try very hard to take a deep breath and disconnect for a moment. To realize that you probably do not even know why your emotions are taking over either and why some days are better then others but recently this has become harder for me.

You have been having a harder time when we go out to eat, when we are in unfamiliar situations, and a harder time controlling your emotions when you plain and simply do not want to be doing something. This often times leads to a scene when we are out in public and as hard as I try to remain calm, there is always at least one person starring at us (usually multiple). I have gotten better at not caring what other people thinking and I just kept telling myself that we are working through it and that things will get better but I am unsure of that myself these days.

Knowing that an outing will be difficult has caused us to do it less often or with less people. There are only certain people know we will go out to eat with as I know they will take it in stride when you draw attention to our table. I find us making quick "escapes" from social situations with peers when you are start winding up so not to have a fit in front of your peers. I seem to find places to tuck inside of so that people can only stare at our backs and not make eye contact with me.

I know often times you cannot control these emotions and sometimes I need to know when to throw in the towel and just stay at home because it will not be a good day but I feel as this isolates us, me, even more. In order to provide for you and continue to be your support I need to keep my sanity also. I do not want to ever resent your disability or to use it as an excuse for us not to continue to live life but I feel that we are starting to lose that balance. That as you are getting older and bigger you are becoming harder to control in certain situations and we know it is not for lack of consistency or behavioral expectations as we always have those. I know that if we have a hard time now what will life be like when you are 12 or even 18 for that matter.

A very touchy subject that goes with this and one I do not always go into great detail on in here is your medication. This is a personal choice that a parent has to make on their own and the pros and cons must be considered. For you, it is a choice I have made and not an easy one. Sometimes the medications seems to make a world of difference and we get through the day without any behaviors and then other days the side affects seem to be worse then if you were on no medication at all.

The thing with the medication though is it is never an easy balance. We need to give it at least 6-8 weeks per medication you are on to see the full effects and in that time you could have increased irritability due to being tired from the medication (which is a behavior we always hope the med will decrease), other times you have bathroom accidents because of the medication increasing the fluids you intake, and the list goes on. But then, when we seem to find a balance, the few times we have, you are a happy child who loves life and can slow down enough to see what is going on around you. When the medications are right you do not throw yourself down the stairs or ram your head into walls. You are also able to sit still and slow down your speech to try to communicate.

I know I am rambling a little but I have also been frustrated with the whole situation lately. I want what is best for you. I want you to succeed, and I want to make sure I am doing what is best for you. You are unable to express to me what you want, how you feel, and what would help make the world a better place for you so it is all such a guessing game. I wish I was a little better with probability and maybe we could cross off options before they were even considered!

Well, buckle up baby because it seems it will be a bumpy ride and we will just hang on tight. I know that the light at the end of the tunnel shows its self on occasion and that is what we hold on to.

I love you
Keep on Truckin
Mom

"Room"

So I just finished a book called "Room" by Emma Donoghue and I highly recommend this book to everyone. I have not actually read a book in over a year as you have kept me a little busy and a little tired but recently, with summer, I have started to find a better balance of relaxing while you are at your therapies or after you go to bed. This book though really opened my eyes to your perspective. Now, the story line was not the same as your past but the one thing in common, you were both kept in a room for a prolonged period of time and in both cases there were many things, places, items, people, etc. you had never experienced before. I did not meet you until two years after you were "freed" so to say and I cannot image how scared you were then, let alone on a plane back to Virginia with me. This book allowed me to see things from your perspective - not used to being out in the sun so not knowing how to react to it - maybe why you shook your head at the sun right after coming home and looking at the sun through the corner of your eyes. Not knowing what things like streets and sidewalks were. Being tired after walking short distances as this was something you were never accustomed to, let alone much physical activity all.

One of your favorite phrases these days is "what's that?" and as tired as I get of labeling the same item over and over again I have to realize that you were never able to ask that question before. Anything from sticks, to birds, to T.V.s to food items, and animals. Over and over again we label items and more often then not these days you are trying hard to imitate the language. You have also started to spontaneously label items around us that you are positive of the name of such as "puppy," "juice," "car," "eat," "shoe," "hat," etc. I all to often forget that when we walk into new places and you start to shy away it is most likely because you are overwhelmed, unsure of what the expectations are, and just need time to take everything in. I am trying hard to be patient baby, just please be patient with me when I forget to slow down a little.

Your language is continuing to grow and you are started to respond more appropriately. The other day you greeted Linda with a "Hi Linda" and when she asked how you were doing you said "good" as if you have always been talking. Then, at lunch a little later you pointed to the table and said "color yellow" and when I looked you were pointing to a yellow crayon. I know you have it inside of you and I finally feel you are starting to let it out.

I have this feeling we are at a breakthrough point. I am not exactly sure what you are about to break out of or in what areas we will see it, but I just know it is coming soon and fast. Other people are noticing the same thing - more intent in your "talking" with more true words and phrases coming through, more interest in other items, attention to details (on occasion) and receptive to work again. You have already shown us you have so much inside of you and I am very excited for this next month or so to see what happens.

I love you baby
Keep on Truckin
Mom