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