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
Friday, June 24, 2011
Sunday, June 19, 2011
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
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
Sunday, June 5, 2011
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
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
Wednesday, May 25, 2011
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
Monday, May 23, 2011
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 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
Sunday, May 15, 2011
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
Tuesday, May 10, 2011
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
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