Light Of My Life

Every morning when I wake up I never know exactly what our day will bring. I never really know what demons you might have to experience and if it will be a day of growing pains or a day of healing. Lately though, the days of healing have been coming more often. I still hold my breath every morning when I go into your room to start our day but since we have moved I have been able to let out my breath with laughter as you open your eyes with a spark and a giggle I wish I should capture forever.

Just A Little "Special"

Yup, you would be the proud owner of these brand new orthotics! Lets just say your personality is shining through more and more everyday.

Special Education Heaven

Well, maybe not heaven to the child but any parents dream. When we choose Helping Hands for you the primary reason was that they are a LAMP center for excellence. LAMP is language acquisition through motor planning and is a systematic way of teaching a child language through the use of an AAC device. Given this was our largest argument in the public schools it was a major reason for us to choose this school as your new home. This system is not only completely changing the way you use your device but it is also undoing everything I thought I knew about how to teach you language.

This has increased my frustration as I have had to hand over all control, hand over your programming, and finally put trust in someone else to see the potential and to guide you in the right direction. Anyone who knows me baby knows I hate not only not being in control but not understanding what is going on. I feel lost right now in trying to support what the school is doing as honestly don't know what they do everyday and how you are acting. I know that you are being successful and that they fully know what they are doing, I am just not used to standing back on the sidelines and watching but I guess we are both growing right now, you are growing your wings so that later you can use them, and I am learning to cheer you on from the sidelines instead of being the one in control.

With handing over your programming though and all of the services Helping Hands has to offer, we have stepped into special education heaven. In the public school system you received speech therapy 2x per week and then had occupational therapy and physical therapy on a consultation basis. Not nearly enough in services but the most we could get. Now, this has changed drastically. You are receiving four days per week of speech therapy, three days per week of physical therapy, one day per week of music therapy, and two days per week of occupational therapy. That is just your one on one therapy sessions and does not include that you also receive each of these services in a group setting one time per week with your class. It is with these services that we round out your therapy needs and are "attacking" all domains at once. I am excited to see the changes over the next year with this consistency.

Your physical therapist has also recommended that you go back to orthotics. You do not mind wearing them at all, it is more of an appearance thing as why I have a slight problem with you in them but I will move past this. The new orthotics for you will cover your foot, ankle, and come about 10 inches up your leg (so they will end right below your knee). When you had your previous ones they were much smaller and only came right above the ankle. For that reason I only allowed you to have them in white as they blended in with your socks and we could hide them. This time though, there will be no way to hide them so I let you pick the design and colors. In just a few weeks you will have new black orthotics with white skull and crossbones on them with red padding and red velcro. Your choice, and at least it is a design that will grow with you since we will be in these for awhile! Below is a picture of the casts that were done this week to have them made.



Love you lil' man
Mom

Silent Stalker

I had the opportunity today to watch you interact at the pool with a little girl. She was probably about three years younger then you but this did not bother you at all. I really noticed how aware you are at your inability to communicate verbally with her. You silent "stalked" her from behind, following her around the pool, instigating her to play cat and mouse, and always staying close enough that you could just reach out and touch her if you wanted to. You never did touch her though, never showed aggression or frustration, and relied upon your nonverbal communication to communicate with her. The two of you played for about 45 minutes never needing to say a word and having this wonderful sense of acceptance where some of the walls could come down. From this, we were even invited to have play dates with her family - you made a friend today and all you had to do was be yourself. I was impressed, confused, intrigued, and most of all proud of the man you are becoming.

Angry for you, Not at you

I have to take a deep breath and continue to remind myself that you have grown and developed so much in the last year and half. That your emotional state and physical state are light years beyond where they were in May of 2010 when you arrived home. I have to remind myself of this because it angers me that the public school system never made more progress with you academically.

Maybe I never left you in one environment long enough. We went through a private special needs pre-school, a typical preschool with a shadow, general education kindergarten, home school, and then back to the public kindergarten with strong special education support in a year and half and with all of this, the public school system continued to undo everything we had done. They seemed to pull every ounce of knowledge out of, they were able to make you regress emotionally, academically, and physically. They took away all the work on potty training, they created a completely prompt dependent child, and most of all they made you lose faith and hope in yourself.

More then anything you need people who trust you and have determination that you will succeed. Individuals, teachers, assistants, and specialists have to believe in your passion and determination in order for you to have enough confidence in them to succeed. This is difficult to understand and trust me I go in circles trying to grasp it myself.

I have to step back everyday and decide what will be my battle. What will be my hope and what will be the strings that I hold onto to move you through the next day. What will I let go of and have you experience on your own, what will I push you towards as your new challenge, and what will I hold your hand for to experience and grow in. These are not easy decisions and everyday after you fall asleep at night I stand in your room watching you, wondering if I have made the right decisions.

For now, I have faith in this school being the right school for you. I have to trust that I have made these life changing decisions (moving to Ohio, changing your friends, pushing you to new level) for the right reasons and that you will thrive in this environment. I have to have the determination to see this through for the long haul as you have had so many changes and such a horrible experience with school up until this point that I know it will take time to let you guard down.

Most importantly I have to have the passion and love for you and the acceptance for the little boy you are becoming. Nothing will ever change this love.

So for now, I take a deep breath, I learn to relax, and I marvel in who you are and the confidence you carry in yourself.

I love you
Mom

Hands On Kinda Day

As we continue to discover and explore Ohio I am always looking for entertainment for us on the weekends to pass the time. We have become much more comfortable spending a day relaxing around in our pajama's which is what Saturday consisted of but today we went and picked up Shelby and headed to Cosi. I had heard wonderful things about Cosi as it is a hands on science museum where you can engage with all of the exhibits. In addition, for the next month they have a Dora the Explorer area for you to play.

Well, I think the pictures say it all:

You and Diego, my favorite!


One kick ass water table - I would love one of these in our own back yard in the future


Flying the space shuttle with Shelby


Discovering the animals that were hiding in the rainforest

I cannot wait for our next adventure and all that will discover
Keep on Truckin Baby
Mom

Santa

Last year at Christmas I didn't know what to except, let alone what to really get you! I had a few ideas and knew you would love anything that had to do with cars but I also knew that even with how far we had come we still had so much room for growth. I do not mean developmental growth but I just mean within our relationship. I knew I still didn't get it and I know for a fact you were still as confused as ever and just living each day, let alone trying to predict what may happen next. With all that though, Christmas last year went off without any problems, you loved unwrapping your gifts and then promptly fell back asleep. I started some of our family traditions such as the "elf" and cinnamon rolls made on Christmas Eve but it really didn't click last year. We even went and had your picture taken with Santa and you did smile and comply but the concept of Santa was far and gone.

Well, this year is a little different. You are so excited when we talk about Santa and what he will be brining you for Christmas. We went and had your picture taken with him and he had a little heart to heart with you on if you had been a good boy this year - to this your simply reply was "candy!" Santa did not quite understand the obsession with "candy" but hey, at least you responded verbally with something! I am sure it also had to do with the basket of candy canes sitting directly next to you.

Overall I am very excited for Christmas this year and continuing with our family traditions. We will be in Virginia for half of the holiday and we will continue to the "elf" tradition while we are there. I have most of your shopping done and cannot wait to see you open the gifts. I know this will be a holiday to remember and love to continue to grow with you.

Love you baby
Mom

Winter Wonderland at the Zoo

A month after you came home last year we went on a road trip to see Jenny and the kids. I had been a little overwhelmed, we both needed a slightly different change of pace, and we had nothing better to do so we made the trip to Ohio for a couple of days. During this visit we made a trip to the Columbus Zoo (I wrote you about this trip in June of 2010). You had a very difficult time, lots of tears, self injurious behaviors, screaming, and overall just a rough day. Not because you didn't like the animals though, it was because you could not transition between the animals and did not understand walking from one exhibit to the next.

Well, now that we are living in Ohio and we have five days off together with the Thanksgiving holiday I decided to give it a second chance. Additionally, the Columbus zoo does this Winter Wonderland where the entire zoo is decorated in Christmas lights and their is a light show after dark. So, we, along with the rest of Columbus it seemed, got the zoo early enough to walk around and see all the animals, enjoy a little dinner, and then watch the amazing light show.




Looking back at our experience in June of last year and watching you lead the way today is another reminder of how far you have come. You were engaged at each animal exhibit, pointing and talking to the animals, showing me which ones were your favorite by your level of excitement, which was the flamingos by the way, and not a single tear. We walked for over three hours, saw all the animals, and just enjoyed another great day.

Here are some pictures from last year and this year. Wow! Look at the difference!


June 2010 : Watching the polar bear



Today: Watching the polar bear and telling me ALL about it


June 2010: Spending time with the fish


Today: Discovering that the fish do not care if you sing off key


June 2010: No concept of what a Penguin was and very ready to come home by this point


Today: Trying to climb in while calling out "Happy Feet" (we saw the movie yesterday before dinner :)


June 2010: One of the few positive moments


Today: Posing for a photo opportunity

If you notice in both pictures watching the polar bear you holding tightly to the zoo map, I guess some things may never change :) But overall you have grown and matured so much since that first time last year.

Love you Baby
Mom

"Big Night Out"

We decided to do Thanksgiving a little different this year. As I learned last year, there is no part of the traditional Thanksgiving dinner that you enjoy. We did make a lot of progress last year and you ate a few bites of everything but as I said then, you gagged on just about every bite. So, instead of having you gag, and anyone sitting in your general area have to watch the show you put on, I decided that we would go out to eat. It was also an easy decision to make considering we have not been Ohio all that long and we were unable to go back to VA for this holiday.

Mommy, feeling somewhat courageous, decided we would attempt the Melting Pot. Anyone who has been here knows that you go for the entire experience, not just the food. I also had to take a deep breath and decided that I would not battle the food with you. If you enjoyed it, wonderful, if not, it was not the time to fight it and we were just enjoying our Thanksgiving. In the long run, you ate a lot of the first course cheese (you preferred not to dip anything in it and instead just eat it by the spoonful), you had a little bit of the salad, and then the main course of meats came. I know I picked this mostly for me as we had lobster, shrimp, steak, chicken, and pasta. I cooked the chicken first for you and put it on a plate. You didn't even touch it UNTIL that lovely pot of chocolate fondu came out. The chicken was gone immediately and you loved dipping all the fruits in the chocolate for dessert. Overall, the entire "experience" took about two hours and you behaved perfectly.



Later that night we did video chat with Uncle Mike and Aunt Suzanna. For the first time, you actually understood the concept of talking to them on the computer and carried on quite the little conversation, you even used some "real" language that was understandable. They were very proud and impressed with the progress you are making just as everyone else is.

Keep on Truckin Baby
Love
Mom

Talking Machine

As they walked you out of school today I did not expect a good report. You had a little bit of a struggle going in this morning - a two person escort to be exact - and I thought for sure the Honeymoon period was over and it was going to be a rough day. Well, yet again you had to prove me wrong and they not only said you had a great day but that you were a "Talking Machine!" I am so proud of you and this really shows how comfortable you in your new school environment. That you trust those around you and you are making progress everyday.

It is a short video but your joint attention and willingness to work is what surprises me. Just the fact that you would sit and do homework with me tonight was a huge step and I could actually be your mom, not your therapist. Your articulation is getting better and your imitation is huge. Great things will continue to come!

Having A Blast

We found a new park near the house - You remind me of Mission Impossible!



Watching a Cars 2 at LifeTime Fitness as you enjoyed a little swim at "Dive in Movie Night"


A great ending to a wonderful day!

I am so proud of all you do - You continue to amaze me everyday

Love you Baby
Mom

Hot Mess

So, since when does a child's hair change from straight and thick to thin in curly overnight? Evidently, as you follow no rules, yours does. You look like a "hot mess" by the time the day is over and each day it becomes more and more curly. I will admit I love it and it just goes to speak to your personality.

We Have Arrived

Well, it was actually a week ago today that we arrived in Dublin Ohio to start from scratch. A new home, a new neighborhood, a new school, new expectations, and overall, a new life. The movers arrived last Wednesday and quickly packed everything into the truck. I then packed you up and we spent the night at Nancy's before hitting the road Thursday morning.

It was sad to leave behind our friends and family and the only true life you have ever known but I know we will not lose the people in our lives and that this will create a much better life for both of us. As I have told you many times before, whether it like it or not, you need an education. Helping Hands Learning Center will be able to provide you this education, the techniques to help you use your device, and the tools to be successful.

You have four teachers in your classroom and needless to say you looked like a "hot mess" when you came out of the building Monday afternoon. You also proceeded to fall asleep within five minutes of getting into the car. From this I know you are having to think on a whole new level and that they are staying on top of you. Instead of you running circles around your teacher they are now running circles around you and all four of them are consistently holding you to high expectations. They have described you as such a happy child though that is a joy to have in class! Very nice to hear this for a change.

I have always seen great things in your future and now you will be able to accomplish more then you ever even knew.

Since Helping Hands is a private school only for children with special needs I am working on finding outlets for you where you can continue to be involved with typically developing peers also. Down the street from us is an indoor sports facility where you can do ice skating and lacrosse. I am also trying to find swim lessons for you again as I have not given up on the fact that you will be holding your own in the water by next summer. There are so many opportunities in front of you, we just need to find the ones where you can continue to thrive!

Fall Fun

Letting The Cat Out Of The Bag

Well little man mommy has been holding onto a secret. Only our closest friends have known this, and you have known something is going on but it is a little difficult to explain to you at this time. But, next week we will be leaving for Ohio, for good. This was not an easy decision for me to make for us but I had to put your best interest in mind, look at the whole picture, and decide what was going to be the right move for us not only now but for our future.

I have found a wonderful school for you in Columbus Ohio called Helping Hands Learning Center. This is a private school for children with special needs that is fully based upon the principals of ABA therapy. The golden ticket to this school is that they are a LAMP (language acquisition through motor planning) center for excellence meaning that everyone is trained in device usage and teaching language through a device. This is going to be huge for you, your communication, development, and prospects for the future. In addition, their speech therapy team is trained in PROMPT which is a methodology that has worked extremely well for you from your private therapist. As much as your expressive language grows everyday and we hear new phrases and words, there is still a connection missing for you.

It is as if you have this huge brick wall around you and we have been able to move some of the bricks, here and there, and create "peep holes" for you to see the world and interact in small segments but not enough bricks have been removed for you continue to grow and develop. We need the wall to be taken down, for enough bricks in one area to be removed that you can just walk through and fully show us what you are hiding inside.

There are times I wonder if I am reaching for straws. That you have shown us all that you have to offer, and that I love you for it, and that my focus on your education needs to change, but then you continue to thrive even in the worst educational situations. Even when no one in your current school believes that you can speak, that you are potty trained, or that you thrive off peers (and don't just use them for punching bags) you take another giant leap forward in the home or community with a smile on your face, and you show those of us who you trust that you have so much more to offer.

You have shown us just how resilient you can be and I do not think it is fair for me to ask you to continue to bounce back every time school sets you back 50 feet from their inconsistency, lack of methodology, and not seeing the potential you hold. For this reason, I know Helping Hands is a school where you will thrive, where you will love to learn, and an opportunity to remove those bricks that are standing in your way.

Since this is a private special needs school we will find the balance in the community for your peer interactions on evenings and weekends. At school you will receive group and individual physical, occupational, speech, and music therapy. The school is actually huge into music therapy so I am looking forward to this new outlet for you. I know things will not be perfect, there will be an adjustment period, and that change does not happen overnight. What I also know though is that with consistency, and individuals who want to educate you and see all the potential inside of you, you will blow us away with your ability, strength, and one day with all that you have to say!

Here is looking forward to bright and exciting new future.
Keep on Truckin'
Love you
Mom

No Pain No Gain.... Right?

I am so proud of you. Yet again you surpassed one of my expectations. A little over a year ago we went for a bike ride with Nancy and T (look back at journals from last August) and you were still in a baby seat on the back of my bike. We made it that day, you telling me to "go" and just enjoying the wind in your face with no effort needed on your part as you nicely sipped your water.

Well, a year later, we went on this exact same bike ride today. This time though there was no way you were still fitting in that baby seat after growing over 5 inches in the last year so I had the bright idea to rent a trail-a-bike (basically makes my bike into a tandem bike by attaching a bike for you by a long arm). The problem, you don't know how to ride a bike yet. When I envisioned this trail-a-bike I was thinking it was very sturdy, didn't move side to side, and all the balance would come from me. Hahaha, maybe I should have looked into it a little more before we got all the way to Georgetown. It did move side to side, required you to pay attention, balance, and concentrate on holding on. The trail has hills, turns, bumps, and a lot of other people who you, of course, love to say Hi to as we pass.

When I first tried to get you on you cried, screamed, yelled some more, and really didn't seem to have an interest. In all honesty, I probably would not have either and I really didn't know if I could pull you for this long trip and not take both of down. But, you made it. Once we got moving you started to really like it. Instead of just saying "go" this year you pointed out the water to me, the boats, cars, other people on bikes, and the airplanes. It was so nice to spend this time with you today, to relax, not worry about what others and just come back to reality a little bit and continue to marvel in the little man you are becoming.

About five minutes before we were back we did have a little mishap and you fell off the bike. I think you may have dozed off, a long day for you, or you just simply let go, but either way you did take a hard hit cut up your knees, elbows, hands, and some pretty good cuts on your back and shoulder. What amazed me though is your tough as nails attitude and you took a minute to regroup, walked a few feet, and then got right back on the bike to finish the ride. I am sure you will be a little sore tomorrow but no pain, no gain, and we gained so much today :)

Love you baby
Mom

Just a little more support

So, I know you try your hardest. That you wake up each morning, take a deep breath, and never know what will be around the next corner. I want you to live your life, be happy, and take in everything that the world has to offer. I want you to be a kid, make up for lost time, and try your hardest. I push you to your limits, I have expectations, and I watch in amazement as you grow.

Unfortunately we are coming to a time and a place where people are not seeing the growth. They are not seeing the special, unique, and talented young man that you are. They are not seeing the hope, passion, persaverence, and future that you have. They are seeing a child who they are characterizing by his disability. They are afraid of his actions, and they are more interested in moving him on then taking the time to grow with him.

I continue to fight for you. To give you the opportunities you so desperately need in your life and to try my hardest to surround you with people who love and care for you. To give you safety, a sense of security, and an environment to thrive.

School has yet again not followed through on this. I am so sorry that everyday you have to go to environment where you are not understood, where you are not accepted, and where your frustration continues to rise. It pains me to hear you cry as they walk away with you, to know you feel as if you need to be saved from the individuals who are supposed to be educating you, and to know that these individuals do not see the same passion for life you do and do not see the potential that lies inside of you.

I can only ask you to be so resilient. I can only ask you to bounce back and come out of your shell so many times before I will lose you forever and you will remain this child forever locked away behind those longing eyes. I cannot continue to ask you to hang in there for the right person who will understand you to come by to educate you and ask you to wait until I fight one more meeting to hopefully get a document that will support your needs. It should not be dictated by a piece of paper. By one perspective, budget, case manager, or administrator. It should be dictated by your strengths and weaknesses, your abilities, your potential, and the spark in your eyes that tells us what is still hiding inside.

So, for all these reasons, I will continue to look for just a little more support. For the people who can provide you the world broken into pieces that you can understand, build upon, and make your own world from.

I love you
Keep on Truckin
Mom

Thats What Friends Are For

You are still working on pedaling your bike yourself but we have made huge strides.

Yes, that is Anna pushing you with her bike al the way down the sidewalk and you just kinda of hanging out for the ride - but hey, what are best friends for! You live your life for the little crew of three down the street and not sure what you would do without them. They have not only pushed you on your bike but pushed you to new limits everyday in your development. We LOVE Anna, Ellie, and Gavin

Enjoy Baby
Mom

Catching Up

Needless to say it is time for an update on your little life!

Lets see where to begin - on Sunday we had your birthday party and you had 14 other children at your side to help you party. You had the BEST time I have seen in awhile. You had a few little ones from you kindergarten class (a nice step since you have been hitting kids in class). the usual gang from the street, and then some from your social skills group, and swim lessons, and a few others. It was such a nice group and everyone seemed to get along extremely well. We were at Rebounderz which is an indoor trampoline arena where the floors and walls are trampolines. It just opened so not many had been there before and they did a great job of moving through the party and helping the celebration. I was a little nervous, expecting the break down, but it never happened it was as if, for those two hours, all the worries went away and your deficits just disappeared. As we set down to have pizza and cake you said "It's my birthday!" and then right before blowing out the candles, which you were able to do this year, you said "happy birthday." I can't help be smile and am very proud of how well you handled yourself.

Since Wednesday of last week you have been "stable." A relative term but a term I love to hear in this household. The only other time we have seen this was over summer and it happily lasted for about six weeks. I take each day of this calm and happy child in stride, never missing a moment of your smile and giggle. I never know when it might disappear again or when I might loss a piece of you again to cycling. It is not that we don't have our good moments even when your mood is struggling a little, but the child I have had since Wednesday and the child I had over summer is such a gift that never misses a moment of what is front of him. That is playful, creative, and imaginative. A child who wants to please those around him, thrives off of his success, and is taking in the world around him. Most importantly a child who captures the heart of those around him. You are interacting with the world around you instead of watching it through a glass window and this is vital to your future success.

Today was the first day that school saw you "stable" and you had absolutely no behaviors. Given you had been hitting students and staff multiple times per day prior to today and to have a perfect day today was the highlight. They were very proud of you as was I. Hopefully you will continue on this path, but even if we have a few hiccups they have now seen the "other side" and all you have to offer.

You teach me so much everyday and we have continued to grow with each other. I have discovered that one of my favorite activities to do with you is go grocery shopping. Those that know me are probably laughing while I say this baby because cooking is definitely not my thing but you get so excited to help when we are in the store. You want to be the one to get the items off the shelf and put them in the cart. We work on counting if we need multiple items and every know in then you pick up food items that you want that I would forget to buy otherwise. For instance when I turned around this week you were putting boxes of gushers into the cart (Thanks to Linda for introducing you to this candy). I take for granted that you get to make these choices, and that you have preferences, and forget to ask and you are showing me these days that you do have an opinion and it is important.

You and I also enjoy watching football together on Mondays. It is funny to watch you cheer for the redskins and do a little dance when they get a touch-down. I sit here now wishing you didn't have to be asleep in bed because it is a late game and I need my little man to be watching it with me.

By the way, you can stop growing anytime now. I included the picture above of you at the playground as you can see how long your body is and that you have definitely outgrown some of the play sets, whether you like to admit it or not. You have grown about 5 inches, if not a little more, since you came home and if you keep this up you will outgrow me in the near future!

Well shorty, keep on trucking I couldn't be prouder of the little man you are becoming and the challenges you are overcoming.
Love
Mom

Happy Birthday

Wow, you turned 7 today! I cannot believe it as it just seems like yesterday we celebrated your 6th birthday. Tonight we enjoyed a nice family dinner (with Sally the crew and Nancy) and in two weeks we are actually going to attempt a real birthday party. I have some apprehension about this, I worry about your lack of social skills these days but you deserve a party! We will be going to an indoor trampoline place for a two hour party and your usual crew will be there along with a few students from school. I invited the boys from your classroom to join us so we will see how many are able to make it.

I watched you today and took a deep breath. You have now been home with me half of the time you were in your foster home and as of now you have been out of your biological home as long as you were in it. These are milestones and each year is another year of hope, opportunity, and success for you. You were excited today and bounced your way out of bed and down to my room. I got you a new bike, its more like a trike for older kids, so that we could continue to work on pedaling and guess what, you did pedal! You were also exhausted by the time we got to your presents tonight so I am excited to see you on it again tomorrow.

Things have been a little rough for you lately overall. I don't know if we are going through growing pains, if school is to overwhelming, or if it is just another phase but tantrums are always on the cusp, you are hitting the students in your classroom (something that shocks me and I know you love time with peers so I am not sure what is going on), and now hitting and kicking at home. It is hard not to smile though when you attempt to kick because you did not have the gross motor ability to actually kick just a few short weeks ago. It is definitely an off balance attempt but I have to smile as I know it is another developmental milestone. The hitting is probably a milestone too but unfortunately you will scare off children as you go through this so we need to get rid of that one - and fast.

As I look at the pictures above from Great Country Farm this weekend and from your birthday today I see the change in your body. You are stronger and healthier. You are navigating your environment, jumping, running, climbing, and doing your best to keep up with everyone. You grew five inches last year alone and your strength has vastly improved. I watched you climb on top of the jumping pillow this week while carrying an inflated cow (had to have been there) but you could not of even done that a month ago.


With all this though, and as much hard work as you put into life daily, I hate to tell you that this school environment will not be a good match for you for you. You need such an individualized program and one that focuses heavily on language development. We need a team that can use your AAC device and that is trained in PROMPT to continue to push you forward. A team of individuals that can respect your past and how it impacts you today but help you work through your emotional walls to learning. Now is the window and now is the time to push harder. I am researching private school options and also, with a leap of faith, looking at a private school in Ohio that is based around AAC device use. With careful planning I know we can find the right educational environment for you.

Well baby, I am off to bed. I love you
Keep on Truckin
Mom

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

Programming

Yet again I spent numerous hours last night programming a communication device for you. We had been working hard with the Maestro lately but due to it's size and shape you have not been very successful with carrying it independently. You actually tended to drop it numerous times a day as you would also try to wave to a someone passing by or put your arms up in the excitement, the device would hit the ground. Yesterday on our walk you dropped it once again and this time it would not turn back on. Now, Dynavox will fix it for us once we ship it back to them, give them a few days turn around, and then they ship it back. But right now we need a way for you to communicate.

You are at a point where even going one day without a device could be detrimental to your progress and your language. It is not fair that you would have to go multiple days without a way of getting your needs and wants met. It would be like duck taping a verbal child's mouth shut for a week - not really realistic or humane if you ask me.

So, we are back to the iPad. We are using Proloque2go this time which is another application on the iPad designed to be a communication device. When I handed you the iPad this morning and we started using it a smile broke out across your face, you have the iPad a hug, and said "thank you." I think it will be good to switch back to this as it is easy for your access. We will definitely keep the Maestro and get it fixed and maybe when you are a little bigger or just get a little more coordination we can move back to it. It also has not been fair that you have had to keep switching programs which means different organization or pictures, different pictures, and sometimes different expectations. I will do my best to keep this consistent now so we can more consistency before school starts in the fall.

You spent a great day of your weekend at the pool and we spent a lot of time with your favorite little people - Anna, Ellie, and Gavin. Over the past few weeks you have really started to shift from only wanting to play with the girls and tolerating Gavin, to fully playing with Gavin. The typical little boy play is amusing to watch and I can't help but laugh as you try to learn to wrestle, fight, and understand why he acts the way he does. He is a great challenge for you and I think will teach you a lot this summer. He will also teach him a lot about patience and understanding :)

Summer concerts have started again and this is the highlight of our week usually. We all go over and you guys will sing and dance for a few hours while listening to the band. Given your love for music you have a wonderful time. You try to make up words to the songs so you can sing along - this week I caught you rocking out to "purple rain." (one of the pictures).

Keep on Truckin baby, good things are coming
Love
Mom

Eventful

Our summer days have begun and we have yet again managed to pack our week full. You are managing speech 2x per week, Kindergarten tutor 2x per week, therapy with Linda 1x per week, PT 1x per week, social skills group 1x per week, and swim lessons 3x per week. When you figure in the commute and eating times it keeps us on the go until Friday. This is the one day that we have nothing actually planned and it was very nice today to sleep in (I have taught you the fine art of this over the past year) and to make last minute plans.

You impressed me this week of being able to participate in speech and PT services without me in the room. In the past I have always had to be present in order to provide a level of behavioral support and how nice it was for me to have one hour, during each of these therapies, to sit in the waiting room and do nothing! I even bought a novel for the first time in a year in hopes that this trend will continue and I can once again engage in leisure activities - what a concept!

Part of this behavior change may be due to a change, yet again, in your medications. We were on our 4th ADHD med with little to no improvements in your overall behaviors - your attending was better but the self injurious and tantrums never seemed to change or got worse - they were all wonder drugs for about 4 weeks and then your body would adjust or the dosage would build up and the behaviors were worse then if you were not on medication. Given that your emotional state and your behaviors are my number one priority it was time to try something new.

So, off we went, back to the psychiatrist and fingers are crossed we have a winner this time. You have not engaged in self-injurious behaviors since Monday! A few tantrums here and there but NOTHING compared to what our life has become accustomed to. I see the smile back on your face, you are engaging again with peers, and not quite as oppositional to show us skills. Now, lets be real here, because you are Bryson and part of this is just your personality and the reason we love you but I do see marked improvement. This is a double edge sword though because it is wonderful that the medication is helping I also believes it confirms the diagnosis I have suspected for a very long time (I will share that for a later post). What it all boils down to though, is I simply do not care what is black and white on the paper - I care that you are stable, happy, and making progress everyday.

We cannot put all of our eggs in one basket, we never know what tomorrow will hold, and I certainly still cannot predict what each day will bring but that is part of what I love about our life. As much as I have to be prepared for what curve ball you might throw me next you have to be prepared for whatever new demand I decide or whatever new skill I think you should know :)

This week we are working on adding my phrases to your device, and yes, I have given you the option to say "stop it" or "leave me alone" finally. You are making marked improvement in your speech and your receptive language and this is the first in better understanding the world around you. We continue to work on you actually showing us that you have mastered your colors, as we know you have but you don't like to show everyone, and we continue to work on your alphabet.

I love you baby
Keep on truckin'
Mom

Water

As I have watched you over the last few weeks in swim lessons and playing in the pool I have learned that water and swimming is an equalizer. It is such an individualized activity that ranges in ability from young children to adulthood yet, I feel and was raised, that it is a vital skill that all must learn. You do not have to be perfect at it or go on to compete but you must be able to remain safe when around the water.

When we started the swim class I knew it would be slow. Not only do you have to make up for what you do not understand language wise when you are asked, you also do not always have the best imitation skills and your attention can be fleeting. Well, yet again you have chosen to prove me wrong :) It is a slow, but really, you are doing a great job. You have all the pieces now you just need to put them together. You have allowed yourself to trust your teachers and you honestly love going to class. I also think you LOVE the fact that I am not allowed to be a part of class and sit behind a glass door and just watch.

I have attached two videos. You have to watch carefully but in the one you are successful on the back float with the instructor letting go for a few seconds. This was HUGE for you. The other video is you working hard on staying a float to get to the wall.

You and I go to the pool multiple times per week and it really is a common ground where you are allowed to be loud, jump around, and you and I can rough house. As you have gained more skills in the water we are able to play more and now you taunt me to pull you under and take you to the deep end. I am sure by the end of summer you will have the basics down and I hope your passion for the water continues to grow. It was wonderful to to hear you laugh today and just let your guard down.

Love you Baby
Mom

Mania

I do not know a better word to describe it. It is a period, a mind set, and a fact of life we are learning to work through. I am learning the warning signs to the cycles now. The periods of time when life is going to be rough for a few days and we better batten down the hatches because you cause quite the storm.

It starts with your sleep patterns changing. You usually sleep anywhere from 10-13 hours a night depending on what time you crash you the night before. On average though you are in bed, asleep, by 8 at night and if it is a school day I pull you out of bed at 7 but on weekends you will sleep till 830/845. Not when the storms brewing though. As things start to spiral you have a harder time falling asleep and then you are awake, usually long before 630 in the morning. As soon as our eyes met on these mornings the tantrums start, but you are not looking at me, you are looking through me. You are disconnected from me and its like all holy hell breaks loss. You don't want to use the bathroom, then you forget how to dress yourself, followed by your inability to even follow one step directions. You are "talking" a mile a minute (in your babble), laughing at everything one minute and then throwing yourself to the floor and head banging the next while you yell at the world. The tantrums last forever and happen often throughout the day. You are attached to me in wanting the security of having me but you also try so hard to push me away. You are also defiant to all I say. If I ask you to stop, or start to count you, it just drives you more not to listen and the tantrum just grows.

On these days it takes everything in me not to lose my temper and I will be honest, I do get frustrated. I try so hard to remind myself that you have no control over this. That in a way you are "sick" and you just need a few days and then my happy, stable little boy will be back. It can be hard though to wait those few days as the minutes seem like hours.

Slowly, usually at the end of day two or beginning of day three you start to come around. The full out tantrums seem to subside a little and then you just become emotional. Wanting to be held, sobbing over nothing (but not the full tantrums) and definitely not wanting to be separated from me. These days are a little better as yes they are emotionally draining on both of us, especially you, the intensity has started to subside and I know we are on the up swing, that we are almost there.

Then, finally, almost always by day four you switch back to a normal sleep pattern, you wake up smiling and talking to me (but not non-stop) and life goes on as what we consider "normal." On these days though you always take a good 2-3 hour nap in the afternoon, you must be emotionally just done, and still go to bed on time at night. Our life then resumes and we try to forget about last few days and me wondering when the next tornado will hit.

I am learning how to work with you better on these "rough" days. That I have to step back, that I cannot demand compliance, I cannot expect you to use your device (because I honestly think you can't process how even though we know you know it), that I must provide extra level of support, and that we have to push through and keep our routines and consistency so you have some sort of stability in your life.

We are switching to a new psychiatrist this week. I have found someone that will not only do your medications but also provide play therapy one time per week. I am hoping this will help fill in at least one more piece of support and provide you one more outlet.

All this aside, we were very excited a week ago when we got your new Maestro (communication device). It has been a little bit of slow transition but this device has SO much capabilities and will grow and expand with you with very little effort on my part to program it. You are starting to put two buttons together to form basic sentences such as "I want juice" or "I need shoes." Eventually, as you grow, it will allow you form multiple word sentences (including pronouns, verbs, adjectives, etc - remember I never did well during this part of english) and improve your language and literacy. We can download your guided reading books for school and seriously, programming only takes seconds. I know this will continue to open doors for you.

Even with four days of behaviors, transferring to a new device, and mommy being low on patience you continued to surprise me today. The device suddenly became more fluent today, you spontaneously made new vocalizations, "Hi Sally," "look at this," "play ground," and a few others. Then, you ran up to the wall, pointed to three different letters and spontaneously labeled them. If we could just figure out what the difference was for you today from the days you don't want to show us anything, we would have the answer and if I had to guess, you have so many more skills then we know about.

Well baby you have exhausted me yet again so I am off to bed. I cannot wait to see what tomorrow brings and whatever adventure may come our way next.

Love you and Keep on Truckin
Mom