Mr. Personality

One day you will learn you are not the shit, but for now, I have no problem sitting back and watching you strut your stuff. You are full of personality, life, and you are a little spitfire. Enjoy the pictures baby.

Oh, and check out this link. We are very excited as this is device you will be getting as your new communication tool and we should have it in our hands by next week!
http://www.dynavoxtech.com/products/maestro/?ctt_id=8800301&ctt_adnw=Google&ctt_ch=ps&ctt_entity=tc&ctt_cli=2x15384x64064x1844956&ctt_kw=dynavox%20maestro&ctt_adid=6023157670&ctt_nwtype=search&gclid=CJbg-s_EhKkCFYXd4AodKyDbow

I love you baby an more to come soon
Mom

Working Through The Needs

Often times I have to step back and remember just how far you have come in a year. I forget the child that you were and forget all of the skills you have learned since you have been home. Sally always says that she will never forget one of the first days you were home we went over to her house for a popcicle and to play with the kids. You proceeded to hold the popcicle upside down, attempt to eat the stick, and then could not figure out how to walk down the deck stairs. Really?! And now you are playing lacrosse and eating clam languini as if you have been doing it forever :) I do not forget though the look in your eyes at times, your smile when you are proud of yourself, and just how hard you have to work. I have mentioned many times throughout this journal that I do not know how to pick and choose my battles with you. That I do not know what skills to put on hold and which ones to continue to push and where to really dig in my heels and not give in. I have gotten better over the last year. I have let go of a few things and definitely altered the way I view others which has helped us both grow. You have also shown less resistence towards learning new skills and are more likely to show me what you know instead of just everyone else.

One area of huge growth for you is your languge. Whether it be expressive (you verbally saying something), you receptive (you following directions), or the use of your iPad to facilitate either of these, you have developed leaps and bounds. You can follow one and two step directions, you take direction from peers, repeat much of what you hear, and use your iPad to make your wants and needs known. I decided long ago that communication is one area that I could not give in or alter my expectations. That communication would be the most vital tool I could give you to prepare you for independence in society and also help lessen some of your frustration.

What I have had to learn though is how to break language down in order to teach you how to use it. When having a conversation with someone or just simply playing with toys we do not even realize how much language we are using. What I and your therapist have had to do is remember this langauge and create buttons for you in your iPad so that you too can learn to communicate on the same level. This is easier said then done. We also have to realize the amount of choices that our language gives us and how to teach you all the varieties and differences. For instance, tonight you and I were working on differentiating chips. I have alway just allowed you to request "chip" and then I gave you what ever chip I felt like grabbing from the pantry. But, if all other children have a choice of what type of chip they want, why shouldn't you? So, we sat down and worked on Fritos, Potato Chip, and BBQ Chip. You picked up on the difference in a matter of minutes and the video is attached. This had to take planning though, time to program you device, and patience to work through it. Like most parents, I could not just say the name and give it to you knowing you would remember it next time. We had to stop what we were doing, take a time out from life, and learn the difference.

Not to say this is a bad thing. The forces both of us to "stop and smell the roses" and take a time out from life, even if we do not always feel as if we have time to. It continues to teach me to appreciate the small steps in life and realize how much goes into a day for you with new experiences, new language, and a whole new world opening up to you everyday.

You are also enjoying your swim lessons and continue to love lacrosse. These two environments shock me as there are so many behavioral expectations and social expectatinos you must follow in order to participate and keep up with your peers. Every practice though we show up with a smile on your face, the other children greet you with high fives and waves, and off you go, just one of the boys.

I cannot help but wonder where you will be in another year. Where you will have grown and where you and I will still be picking our battles. I still do not know what will be the best school environment for your next year or what services to push over summer but I do know you will continue to shock and amaze us. I know that you will give a little smile to the right person, wink your eyes at the little girls, and continue to giggle yourself into the hearts of those you meet. I know that tomorrow will bring us new challenges and new adventures but that we are both now ready for them. That you and I will tackle the world and you will conquer all that has been a challenge. I promise to write more later - Night Baby Love Mom

One Year

So I wish I had time to write more but my bed is calling my name. This last Friday marked the year point for you being home. Gotcha Day will always be the most special day between you and I and a true day for celebration. Really, a life changer for both of us. I promise to write more on this soon but I will leave you with the pictures for now. One being from this week and the other being from in the airport right after we walked through security to bring you home.

I love you baby

Testing

I am so very proud of you. After much thought and consideration I decided to go through a private psychologist for educational, developmental, and emotional testing. When you first arrived home I had said I wanted to give you one year... one year to grow and develop and at least form some bonds here and have stability before you underwent testing. During this last year you also gained some skills, such as sitting in your chair longer then two seconds, to help with this testing. This was not an easy decision though to finally make.

Even though I know you have special needs, and lots of them, I have felt safe not having a label on you. Always being able to say that all of your needs are because of your past, and well, even though your past greatly impacts who you are today we need a diagnosis. We need a baseline and a starting point and also evidence so that when I have the energy I can once again fight the public school system for an appropriate placement. I have been scared though to see these results, what if they come back ID, AUT, or ED? What do those initials actually mean? Will the tests be an accurate picture of who you are? And how can they test a chid who is overall nonverbal and has no paper and pencil skills? All this aside, we had to move forward.

So, off we went today to Bethesda and you did a wonderful job. I am so proud of how hard you worked and how hard you tried to complete the tasks that were presented to you. You worked for over three hours, some tasks were easy for you, others were well beyond your comprehension but you attempted and gave it your all, and that is all I ever ask of you. I just want you to try your best and allow yourself to experience the world around you. I will honestly say, that given the tests were standardized, meaning questions could not be altered and there were no prompts or teaching permitted, I think the results will be an accurate measure. Now, I know you can do more, you have shown us more, but not under those conditions and that will all be written into the report. On top of this, everyday is a new day for you and tomorrow you will learn another skill that you did not have today. Just keep on trucking baby.

All of this aside, we made it through our first mothers day. We had a very busy weekend between lacrosse, swim lessons, birthday celebrations for Terry, and Mothers day dinner with Nancy and Terry we spent very little time at home. You know, you have your ups and downs but you did hang strong for the most part.

Oh, and most importantly, YOU LOST YOUR FIRST TOOTH! I have no clue where it is, I think you swallowed, I do not even though if you lost it Sunday afternoon, evening, in your sleep, or Monday during breakfast but it is gone. I made a big deal out of it when I discovered it brushing your teeth. You just stuck your finger up your nose, said "tooth" and went about smiling as you ran out of the bathroom. Needless to say, a bigger first for me this time then you :)

I love you baby
Mommy

Pictures are from our weekend

Child Abuse Awareness Month

April is child abuse awareness month and even though most of the world shutters at the thought of child abuse and those individuals who mistreat and misuse innocent children there is still not enough being done. I will be honest, I was one of those individuals where you hear the stories, you feel sorry for the children, and you question how anyone can do that to a child and why are the parents not in jail, but then you continue to move on about your day. We feel that there is nothing that one person can do to help, that nobody can adopt all the children who have been abused, and the social workers desks are backed up for years. Well, there has to be more we can do though. Even if it is just being aware and realizing the warning signs that a child might be being abused at home. Provided the extra few moments to not only listen to a child but also watch their emotions and their actions as these tell a story too. Volunteering our time as a Big Brother/Sister to local organizations or just educating those around us of the potential of child abuse and the life long effects of this.

I never realized the devastating and long lasting effects of child abuse until this year. I did always know that the emotional "struggles" or tantrums would be around and something we had to work through but I never imagined the effects in so many areas of development.

Emotional and physical abuse has impacted your language, social skills, cognitive development, emotional development, your understanding, and so much more. Everyday is a not only a struggle for you to take in the world around you but also exhuasting as you try to catch up on everything you have missed but yet are afraid to experience. Often times you will shut down, stop talking, afraid to make your next move or interact as a typical child your age would out of fear of what actions will be taken against you. This is an engrained behavior that will take a lifetime to rebuild and allow you to trust and have confidence in yourself and those around you.

A child who has been abused cannot be "fixed." There is no solution, not a sole therapy by itself, a medication, or plan, but instead it is a great deal of time, understanding, patience, and love. I myself was not necessarily blessed with the characteristic of patience but I am learning. I am learning that I have to sometimes sit back and wait for you to do it on your terms at your pace, that I have to wait for you to come to me, and I have to wait for each brick to slowly be moved out of the way. You allow us to see glimpses and moments of what lies behind these bricks and it is amazing - and as with many other things, the great things are worth waiting for.

If you had not been abused and neglected you would not be the child you are today. Maybe you would be talking, maybe your cognitive skills would be higher, and just maybe you would not have special needs at all. Also though, there is a chance you would not have the compassion, resilence, determination, and love for life you have today. You do not deserve the past you have had, the hands you were dealt, and neither do any of the thousands of other children. Adoption is not for everybody - especially the adoption of a child with special needs but everyone can do their part on become more aware of the innocent children.

I love you baby
Mom

One of My Favorite Parts of the Day

I love when you sit down and decide you are going to read me a book. This has to be one of my favorite times of the day to see you pointing to the pictures, making up your own story, and interacting with it all. You love all books and magazines and this will be a huge strength for you as you continue to develop.

I need to find the Community

So everyone always says it takes a village to raise a special needs child. I am feeling this more and more lately as I attempt to raise you and keep up with the ever changing world around us. I need to find that community for us. We have part of it. We have our friends and family - those that are closest to us that we love but I feel that we are missing a big piece of the puzzle and that is a team of professionals, that has experience working with the multiple disabilities that you have, that work cooperatively together to find the best treatment option for you.

You do not follow any of the books and what works one day does not work the next. I become confused and frustrated and in all honesty lost in what I am supposed to be doing and providing for you next. I love you with all my heart and I know that is a huge piece to helping you heal from you past but I know I cannot provide you, by myself, all of the additional supports you need to continue to grow and to allow the world to see the young man you are becoming. I can create the opportunities and open the doors, we just have to find the right people standing on the other side.

I look at your face lately and I see a look of innocence. This is new for me. I have always known you were cute and that you use this to your advantage but lately it has been different. Maybe it is as you and I continue to grow, maybe it is the longer hair, that facial features are changing, or just a look in your eyes but something is different. When I catch a glimpse of you deep in thought I can see how wise you are beyond your years. I can see that you see the world differently from us, that you never take a moment for granted but that you also have seen the evil it can hold. You are a beautiful child on the outside and with you this comes from all your experiences and all your emotions that are deep within.

This week has been rough. Your behaviors are extreme again and the self-injurious behaviors are out of control. What are you trying to communicate? What do you need? How can I help you? Unfortunately you are not able to answer any of these questions. All I can do is sit back and watch, wait for you to allow me to move a another brick out of the way, and hold you when you are ready.

The other day I heard you in the kitchen - you could not see me so I stood back and watched for a second. You touched a bag of cookies and then started yelling at yourself. You became angry, pointing your finger at the floor, walking back into the play room yelling at the floor, looking down, and pointing at something. Then, all of the sudden, you just fell to the ground and laid completely still for a moment - not making a sound. Then, you popped up, and went through this routine all over again. When you got up the second time you saw me and again you had the face of a deer in the headlights. You were not connected, it was like watching a person struggling with PTSD as you were remembering something that had happened in your past. You were not only acting out the adult but also yourself laying on the floor, helpless and alone. Baby, I don't know what has happened in your past. I don't know if you remember everything in your past but I do know you need to continue to work through these moments. That it is a step that you feel safe and comforted enough to work through some of these memories.

You have grown so much yet I know every step forward is two steps backward. That the happy balance we have been searching for is still years away, and that is okay, but I just wish I knew where to turn next sometimes. When behaviors escalate do I call the pediatrician, the psychiatrist, or the specialist? Do I increase therapy or are you having to much therapy? Are the medications causing the behaviors and would you be better bouncing off the walls? Nobody has the answer to any of these - it is trial and error and I hate trying option after option on you even though it is for you.

I just don't know what tomorrow will bring for us baby but keep on truckin' - you are an amazing strong little boy and we will conquer this.

Mommy