You Are To Smart To Sit In The Corner

So we knew this day would come. One thing you have slowly learned about your mommy is that I am a little bit of a control freak and that I am a little obsessive compulsive when it comes to your educational needs, programming, and behaviors. That I need to know what is going on and I need to understand why things are happening, or why a program works and doesn't work. I can not just sit back and watch things occur around us. I need the knowledge and I need to know where we can be pushing to the next level. You are too smart to be sitting at a table one on one looking at picture cards. You are to smart to not be held to higher expectations and you need to start showing this to people.

We moved here for Helping Hands. I put all my trust and faith in them so that I could step back, let them do their job, and watch from the sidelines. Lets just say that didn't last for long. I have been frustrated this week in their academic programming for you. Even though you are using your device so much better then you ever had in the past, they are not holding you to high standards when it comes to your cognitive ability. Actually, they moved you all the way back to identical matching which is a skill you mastered the first week you came home. I feel as if they did not read your IEP from VA, did not contact the individuals I tried to put them in contact with who could fill them in more appropriately on your skills, and did not take my information into consideration.

Because of this, everything hit the fan throughout this week and finally came to a head today. Lets just say I finally sent an email explaining that I would not put trust in a system that was not appropriately meeting your needs and that I was paying to much money for them not to be educating you. That you were not to sit with an adult one on one looking at picture cards anymore. That you were not to be pulled from your core academic subjects to work on colors and shapes and that they needed to find a way to individualize your program within the group aspect of a classroom. They seemed shocked that the goal is that you go back to public schools (with support) in the next 3-5 years and that I hold you to the same behavioral expectations as any typically developing child your age.

You have already shown them you are ready for this. I mean seriously, they changed the entire setup of your communication device and the expectations with using it as of January 1st and you already learned the system and use about 50 different 1 and 2 word phrases with it throughout multiple environments. If you can navigate through 3 and 4 pages deep with 60 buttons on each page and still create a 2 word phrase appropriate to the situation then you sure as hell know what a "shoe" is and need to take your learning to the next level.

It is okay though. I am confident in my fight and am stubborn that you will succeed in this environment. I know in the big picture this is the school for you. That they have the means to make it happen and can provide the intensity we need, they just need a little guidance right now on how to do that and I will happily provide it to them - whether they asked me to or not :)

I have a meeting set up with the directors, your classroom supervisor, and the behavior analyst on Tuesday next week. We have allowed plenty of time for this and I plan on walking in well armed with information, print outs, data, etc. We will move forward, get your appropriate program in place and continue to push you to new levels. Not necessarily a set back just a learning experience that I cannot let my guard down and will always be fighting to ensure your educational needs are met. All of this will just make us stronger!

Keep on Truckin Baby -
Love
Mom

Really....

There are occasions that I honestly just have to look at you laugh. Throw all of my ABA and behavior skills and knowledge out the window and just sit back and marvel at the child who you are becoming. Every now and then you pull something out of no where that reminds me you are just a kid. It reminds me that you get it more then we give you credit for and that you are taking notes for the future. Here a few of your latest moves that make me say "Really..... did you really just do that?"

- At the dentists office today you were over tired and acting a fool. I said in my mommy voice "do we need to a come to Jesus?" Without missing a beat you turned around, smiled, and said "Hi Jesus!" - Really?????

- When your dentist came over to you today you ever so nicely grabbed her breast and said "mine!" - Really???

- We went through the drive through tonight for dinner (no surprise with our busy lives these days) and got the happy meal, no bun, with fries. I always withhold your fries until you have eaten all of the burger. I turned around for a second to get our drinks and you had nicely moved all of the fries from my plate to your plate and just looked at me, smiled, and said "want?" - as if you were asking me if I wanted some of my own fries - Really?????

- You had a rough day at school yesterday - who knows why - but ended up hitting people about 14 times. When we were in the car and I asked you about this your response was "music." I asked you the question again and you again responded but this time with "more music" I told you no more music until you tell me why you are hitting people. You responded with "no" somehow found your iPod in the backseat and turned up the volume - Really????

- Fed you dinner a few nights ago, what I thought was a good dinner, I made you pizza - I went upstairs and came back down discovered you had fed it all to the dogs - you looked at me, grinned from ear to ear as proud as can be - said "stop" and ran off laughing at me - Really????

- One of you new favorites, I ask you a question, you answer me in your own little language, I tell you I didn't quiet get that and can you try again - you get this stern little face and say, "I SAID.... (fill in here)!" with "I said" being completely intelligible but then filling in the rest in your own language again - Really???

The list could go on - these are some of the positives from the last few days. I will always be proud of the little man you are becoming. I can only fault myself for the smart ass personality and for you being a spitfire. It does not help that those around think you are "just so cute" with the curly hair and the little swagger in your walk.

I will say though, we may have to reign you in long before your teenager years if you keep up at this pace. You are literally a little frat boy in the making!

Love you Baby
Keep on Truckin
Mom

Roller Coaster

I am not sure I would want to be in your head, even for a day. I am sure it is as if you are riding a roller coaster and you have moments, days, weeks, where the ride is nice and smooth and you don't even have to really hang on and can enjoy yourself. But then, all of the sudden we have the ups and downs. You climb slowly, over a period of a few days where we start to see changes in sleep patterns, inability to concentrate, struggle to use your language (in any form), and difficulties with transitions. There are other signs such as you forgetting how to use the bathroom but the list would be way to long to put here for you so these are the main symptoms that signal to others something is just not right.

These signs are your only form a communication and the hard part is that you have no control over them. You are unable to coherently express any of these emotions as they continue to build and your body fights hard against them. You want to be good, you want to make others happy, you want to succeed, but there is something inside of you fighting back and making your life a living hell, and plain and simple wearing you down to the point of exhaustion. Then, come on the final day (the peak of the uphill climb that a roller coaster must take), you emotional just break down. I can see the circles around your eyes and you can no longer fight what is happening internally with how you want to act externally. There is unexplained crying, falling to the floor, more crying, some sobbing, running around like a chicken with your head cut off, noncompliance, self-injurious behavior, fear, anger, and just a rush of emotions and adrenaline that you have absolutely no control over. Following this going on for a few hours, you then sleep for three to four hours.

After this long nap though you wake up as if nothing has happened the last few days. It is like the roller coaster comes to an end, you get off the ride, maybe one day will talk about it a little, but otherwise its as if it is no big deal. How do you do this? How do you then wake up, smile, and suddenly become my happy child again? What is even more amazing then you bouncing back and continuing on with your life is that you make up for all your lost time. You are extremely happy and find that giggle deep within you that lights up the room. How are you such a resilient little boy?

Many of those close to us know that you have many diagnosis which include (but most likely not limited to) Early Onset Childhood Bipolar Disorder, Mood Disorder, Severe speech and language delay, Apraxia, Gross and fine motor development delays, ADHD, Meth exposure, PDD, and recently we added to the list a chromosome abnormality - you seem to have an extra piece on your 1st chromosome so you technically have a genetic disorder for what its worth.

With all this though, you are one KICK ASS KID. The cycling I described above is a fact of life and something we are learning to work through. With your balance of medication and the great psychiatrist we have in Virginia, not to mention a wonderful support system, the cycles happen further apart and you recover much faster afterwards. None of the labels listed above matter, none of them describe who you are, what you live for, and who you will be in the future. None of those labels describe your laugher, the spark in your eyes, your manipulation, or your sense of empathy and compassion. Not a single label can describe your smile, your passion for music, or your ability to light up a room - trust me, I have searched for all of these characteristics as symptoms and they just don't exist! They are simply who you are, your personality, and your sense of self. The make you the unique and special boy that you are today and help shape the young man you will be tomorrow.

I cannot stop the roller coaster once it starts but I can ride in the seat next to you. And let me tell you a little secret, I hate roller coasters! I have always been scared to death to let my feet leave the ground but I can't imagine your fear to go through it alone. So, We will buckle up because it will be a bumpy ride but we will make it and we will both grow, develop, and survive. We will both survive! And to tell you the truth, there may just be better things on the other side of the hill.

We just came through one of these rides. It ended on Monday night with night terrors numerous times, and lots of wake up calls for me from your bedroom (the power of your device for communication). But when you woke up on Tuesday morning you greeted me with a smile and and a laugh as you bounced around on your bed saying "Monkey." We fell right into our routine and you haven't missed a beat since. You have had an amazing week at school, wonderful ice skating and speech sessions, and are looking forward to a great weekend.

I am so very proud of you and cannot wait to see what your future holds.
Keep on Truckin
Love
Mom

Who Would Have Thought

I end up asking this question quite often at the end of the day. Who would have thought you would be able to play lacrosse? Who would of thought you would thrive off your peers? Who would have thought you would be potty trained? Who would have thought you would love clam linguine? Who would have thought you would have a spark in your eyes and a jump in your step? Who would have thought you would be the little boy you are today?

Today though, I am wondering, "Who would have thought you could ice skate?" I was so very proud of you tonight and shocked at your "skill." I was expecting a battle, tears, tantrums, and in the end a lot of time sitting on the cold ice while you came to terms with this new adventure.




Boy was I ever wrong. You never stopped laughing and it was contagious. A few instructors came up to me to tell me how much fun it seemed you were having. You wanted me to stay behind you and have a hand on your chest but you did all the work. You ended up pulling me all over the ice. When you did fall you were (surprisingly) able to stand back up on your own! (video below is one of the first times you fell and getting back up)



I am hoping this will be a great workout for you twice per week and also allow you to continue to build your core strength which is so desperately needed. It is wonderful to know that I can continue to provide you opportunities and that you and I can take new risks.

So, Who would have thought you could ice skate?..... It doesn't matter because no matter what we think you continue to prove us wrong on a daily basis :) You continue to grow, expand, and develop well beyond where anyone thought you would be.

Love you babes
Mom

"Oh Shit"

I guess the time has finally come when I need to be careful of what I say when you are around. It has been a long standing joke that one day I would get a phone call that you had said something inappropriate but that I would not really care what you said as long as you were talking. Well, that day came today. The note from school today read:

"Bryson went around saying today what we believe was "Oh Shit." At this point we are ignoring this behavior. Have you heard this at home?"

Well, umm, so, honestly??..... It is probably the most commonly used phrase in my core vocabulary. Not something I am exactly proud of but a word that I do use very commonly and do not even think twice. Have I heard you say it? Well, again, no, not exactly but I do hear you say "ass" and "damnit" on occasion, but usually only I can understand it when you do due to your poor articulation.

So, I am very proud of you for talking more, for using your words, and for expanding to two word phrases spontaneously but I guess we will have to focus on what words you are allowed to repeat at school. For now, I will hang my head and apologize to your teachers, take the blame and move forward but inside I am damn proud of the little boy you are becoming. Your personality, spunk, and determination amuse me greatly and I know by the time you are teenager I will have my hands full.

Keep on Trucking Baby
Love
Mom

Tis The Season

It is that time of year again and last night you picked back up the lacrosse stick and hit the field running. You were so excited to be back on the field and one of the boys. Lacrosse is definitely not as a big of a sport here so the setup is slightly different. It is more of a clinic for boys 7-10 (you barely made age cut off) but I do feel they worked on basic skills a little more which was nice.

You still need my support on the field but it is much less. Last year for your first season there were tantrums, gloves flying, me yelling, you crying, and lots of boys watching. Don't get me wrong, you came full circle and loved going but it was tough for you. Hand over hand help ment half the time I was clothes lining you with your stick because our feet would get tangled up and I couldn't hold you up. Working on scooping and running was more we scooping you and kicking the ball to the next player. With all that though you gave your high fives, "talked" to the boys, and left the season happy. So, why wouldn't I sign us up for this adventure again........

Last night though your motions were more fluid. There was no falling, clothes lining, or equipment flying. You did not need support to stay with group or follow directions and your certainly did not need support to engage with those around you. Your coaches are young and are excited to have you. The understand the passion and desire and are happy to have you on the field. They do grow them big here in Ohio so you were by far the smallest on the field but it did not slow you down.

Keep on moving baby - I am so proud of how far you have come and all that you try to do


Love mom

Break It Down

I get great amusement from watching this video of you. I turned on the camera so I could get a clip of you using your device which I am trying to document and track a little more. Ends up you not only used your device but also decided to put on a little show! I didn't even know you knew what "break it down" meant but boy did you ever......