A New Diagnosis... Rolling with the punches

For quite some time we had been concerned with Bryce’s tone. The scissoring of his legs was the worst we had seen it and his tone had been extremely high. Back when we went through SDR, the operation was to address the spasticity in his legs. The operation did eliminate the spasticity and he was able to have full range of motion in his ankles. However as he recovered and grew stronger it became very apparent that his tone was still a big part of the problem. SDR doesn’t solve for the tone, but other operations could. We have had several discussions on surgeries to address and hopefully manage his tone. Recently we opted to go ahead and begin Botox injections again so that Bryce could get more immediate relief while we discuss the next steps.

In late January we had met with his CP doctor for the injections and to discuss what those next steps should be. They sent in a Child Life Specialist to entertain Bryce during the appointment and to also help keep him as calm as possible during the injections. As they usually do they asked what Bryce loves so they could bring in the IPad and show him his favorite cartoon or play a game. We told her his love of sports and that he would be most happy with that. This decision ended up being key for that appointment. Bryce gets very excited when he watches any games so this gave the doctors an opportunity to see Bryce when he was excited (since most times he is NOT very happy to be there). When they witnessed Bryce and how his body responded when he got excited the atmosphere in that room changed. It became very obvious to them that this was dystonia.
Dystonia is a movement disorder that causes a person’s muscles to contract uncontrollably. Over time the contraction can cause the body part that is affected to twist involuntarily and can result in contractures and abnormal postures.

The symptoms of dystonia can range from mild to severe in nature. So the reaction of Bryce’s body when he is excited is the brain sending the response to certain areas of his body. Bryce when watching sports will point his toes and scissor his legs. His arms get tight and go straight out (like Batman arms). He also has times where he will turn his head a bit and grind his teeth. All of these responses are a result of the message from his brain to these muscles. All along we believed it was just his excitement and his tone kicking in which it was. However, I never considered this as being something bigger and more concerning.

There are several other symptoms of dystonia that Bryce has that we were unaware would be related. When he eats he lets his head fall back and we constantly have to adjust his head position when eating. Some days he will keep his head turned to one side and we have to move the chair sideways so that we can get to his mouth. They also asked if Bryce keeps his arms bent and I explained that he did when we would try and change his shirt but definitely when we were putting on his winter coat (which is a very difficult thing to do). The more we looked into the more things became clear. We knew that things had changed but had honestly thought these changes were a result of him growing. Hearing this news was pretty devastating even though I really can’t say that it was completely shocking.

Why so devastating? The diagnosis of Cerebral Palsy was tough but we also knew that it wasn’t a progressive disorder. We knew that over time we would have to manage his tone but I honestly always believed that once we made it through all these phases of growth that we would be able to better manage his tone so that he could at least be comfortable. Dystonia is a completely different ball game. Most times it is a progressive disorder and (as the doctor told us) it is extremely difficult to manage. It never goes away and it can change over time. Some people deteriorate and can lose abilities. For example, someone that could once eat may need a feeding tube placed.

We discussed several different treatment options and we discussed that every person is different so the right treatment for Bryce will be trial and error. Everyone did agree that we needed to address this now because of the impact that it is having on bone development and so forth. There had been a dramatic change in his right hip from August to January alone…nearing but not quite at the point of needing hip surgery…. yet. So we started a plan to gradually bring on board medication(s) and we have also scheduled phenol blocks that can be injected into very specific nerves. Then we will see how things are at that point before determining next steps. Best case scenario – these things alone will be management enough (at least for now).

For a few days I had to exercise my right to be upset, mad and to kick yell and scream. It’s hard when you can’t find a release – when you are so mad and upset that you have no idea how to let it go. How can you keep spinning the positive when you keep getting punched in the gut? So as much as I wanted to throw my hand’s up and let the entire world know how unfair this is to my sweet sweet boy – I just tuck those feelings away again. We will deal with this and find the best way to manage it knowing now what we are up against.

The phenol blocks have been scheduled for early tomorrow morning. We are to arrive at 6AM and the OR is scheduled for 7:45AM. We should see an immediate change when he wakes up (Botox takes a week or two before any change could be seen). If all goes well we should be able to come home tomorrow. For a few days it may be hard for Bryce to adjust and he could seem a little “floppy” but hopefully this works and will last as long as possible before he needs it again. It is temporary but unlike Botox that lasted maybe 3 months for Bryce – this “could” last up to 10 months for him. I hope and pray that it will last that long for him but with it being his first time we won't really know. I am praying for positive results and a prolonging of a much larger surgery.

Giving Voice

When the boys were younger we were very focused on helping Bryce overcome some of his physical limitations. We knew that he couldn’t sit unassisted, crawl, much less walk. At such a young age he had a very busy schedule full of therapy and specialist appointments. We were doing all that we could to give him every opportunity to overcome some of the many barriers that he faced. It wasn’t until their second year of preschool that we needed to start also focusing on his communication. Sure, we knew that he wasn’t talking but at home we could easily communicate with Bryce. We knew what his different signs were for when he was hungry or thirsty. We knew if he was happy or sad and usually we would know exactly what he was wanting. It isn’t until you realize that the rest of the world might not know those signs that it really started hitting home. Then your thoughts take you to other places…. Bryce is excellent with his head shakes for “No” and “Yes” but I am not always sure the choices we gave him were what he would have chosen to “pick” from. So the year before they were to begin Kindergarten we started the process of trialing communication devices that would work for him. If you have ever met Bryce you would know that he is a bright boy, but even we didn’t know how much he knew. Did he know all his letters? Numbers? We really couldn’t answer that with certainty.

Many devices require use of a hand or finger to make selections for communication. Bryce has little use of his right hand as it stays fisted most of the time. He is a definite lefty but he cannot use his fingers to make precise selections on a device. We heard about a relatively new method of communication that allows a person to make selections on their eye gaze. So all therapists were on board and it was very clear that this would be the best device to start with. The initial evaluation and Bryce’s first time using the device was AMAZING. I wrote a post shortly after on that experience. If you missed it click here. He went through several more working sessions in order to document for insurance that he was successful using the device. Let’s just say that the battle of getting this device covered by insurance has been one of the longest most painful experiences yet. I won’t taint this exciting news by going into the very long process. BUT….Finally last Friday, January 16th, we received approval for Bryce’s communication device. It is so hard to believe that 18 months of trialing the device, receiving many denials, requiring more and more information… Bryce will FINALLY have his very own way of communicating.

The device (Tobii Eye Gaze I15) will calibrate to Bryce’s eyes and he will be able to operate it much like we use a mouse to operate a computer. The amazing thing about this device is that it will mature with him. The software will require updates so that the programs that Bryce will be using will grow right along with him. The device will give Bryce the ability to make choices, express his needs/wants and let us know about his days. It will even allow for him to use synthesized/digitized speech that will “say” what he chooses. You can even select a voice that is age appropriate that can also adjust as he gets older. Eventually he will be able to send emails and text messages and access the Internet. It can even turn channels on the TV, operate a DVD player, turn on lights and open doors! There is a built in camera that would allow him to take pictures and post images. He can do homework or classroom tasks and print them right in the classroom. I am simply amazed and so thankful that we live in a time that such technology exists!

As you might imagine it will take some time for Bryce to build up endurance to use the device for long periods. He will have to train his eyes and strengthen them in order to be able to use it for long periods of time. We just click a finger or type a key to make our selection… sometimes without needing to look at what key we are selecting. Bryce will have to “gaze” at each selection in order for the software to identify what he is choosing. Matt and I will also have a lot of learning to do and will need to participate in some training as well. But it is so exciting to open this door for Bryce! I am so excited that we will be able to communicate with Bryce in a way that he can let us know what he is thinking, how his day at school went, who his new friend is and so on. It will take time and very small steps – but it will be so worth the wait!

Just because a person can’t speak doesn’t mean they have nothing to say.

May Your Days Be Merry

"What if Christmas , he thought, doesn't come from a store. What if Christmas, PERHAPS, means a little bit more."

-Dr. Seuss, The Grinch

 

Wishing You a Very Merry Christmas and Happy New Year!

The Croley's

A Very Special Gift

I often tease that I need therapy. My family has asked what I would like for Christmas and jokingly I have said “a therapist.” Truth is that I wonder with each new battle we face, is this the year….. The year I finally make time to go to therapy? Sometimes I wonder how I have made it this long without going and pouring my heart out to a professional psychologist. What stands in the way is time. I don’t have much of it and if I could somehow find more I have several other things that I could fill the time with. Don’t get me wrong – I do believe that therapy/counseling can be very beneficial. I think that part of me holds back because I would probably end up in a room crying – not talking – then mad that I cried and couldn’t talk. So I avoid it.

A few years ago I lost a very strong supporter of mine. She always made me feel… well, perfect. I could tell her anything and she would listen. If anything was going on she was one of the first people to know. We never went a day without talking to each other. She loved me fiercely and taught me how to love just the same. My Grandma Nancy was much more to me than just a grandmother. She was my friend and my confidant. I have never lost someone that years later I still think of daily. Every time we face a new battle or something amazing has happened, I think if I could just call her. If I could just talk to her – if only heaven had a phone.
Over the last month I have done what I always do, I struggle emotionally and then miss her even more. After the heartbreaking play incident, I thought of her as always. I talked to Matt about how I missed her as we drove to my parent’s for Thanksgiving. After we were there for a while I told my Dad the same. After a few minutes my family handed me a bag… An early Birthday present since mine was the very next day. In that bag there was a frame with an index card with very familiar handwriting….

“Accept what is, let go of what was and have faith in what will be.”

I cannot begin to describe the chills I got when I read this, I immediately new her handwriting. Then I hear my parents’ side of the story. Just a few days before my mom had been watching the boys and my niece. They were piling papers on Bryce as he sat in his chair. They were wild and pushing my Mom’s patience a bit. As she was cleaning up all the paper, she noticed Bryce had one clenched in his fist. She took it and immediately saw my Grandmother’s writing. She couldn’t believe it – no one in our family had seen this card before. She asked Cohen where it came from and he refused to say anything other than – he didn’t do it and put blame on his cousin. My mom told him he wasn’t in trouble, she just wanted to know and he just shook his head. Right away my Mom knew that message was meant for me. After the struggles we were in the midst of, it was clear.

There was one dear friend of my Grandmother’s that knew how special our relationship had been. My Grandmother reached out to her when I was a freshman at college. She worked in the Psychology Department and since (at that time) that was my major she asked her to help me find a job. I wouldn’t know it at the time and my Grandmother didn’t know either but this dear friend worked with her staff to hire me when there wasn’t a position available. I thought of her that day – wanting to share this story with her. I am not sure why other than the fact that she realized our relationship was so special and I wanted to tell her what had happened.

For several years I hadn’t spoken to Leva, both our lives were being complicated by different circumstances. Thanksgiving evening I called my Dad again, I was still in shock over my little framed note and its message. I told Dad on the phone that I wanted to call Leva (as strange as that may be) and share the story with her. At that very moment Leva left a comment on my Facebook which isn’t something that happens frequently. Once again I was stunned and sent her a message asking for her phone number.

We connected a few days later which was emotional – I think – for both of us. We promised to keep in touch and it was such a wonderful feeling when I got off the phone. I know people say that our loved ones never really leave us. That they are watching out for us from up above. I haven’t always believed that everything happens for a reason. My faith isn’t as always strong as it should be. But this….. This was not a coincidence. This was so much more than could be explained.

I honestly believe that my Grandmother knew how much I needed her and I think that she made sure to let me know that even in death, she has never left me. I also believe that she wanted Leva and I to reconnect. It isn’t clear to me why but I know now that there is a reason.

When EXCLUSION makes a Public Appearance

Remember that blog post from August – the last one that I have been able to write because it has been so hard to deal with what we have going on now. In case you missed it and want to catch up Click Here. The school transition has been challenging for Matt and I. It was always a very strong belief that we keep Bryce in the general classroom as much as possible.

As we headed further into the school year it would be obvious that the general classroom participation was almost non-existent. I received zero communication from the regular classroom teacher. A nightly reading log required of all students was never checked for Bryce, but Cohen’s was always checked. Actually Cohen’s log would be graded, highlighted and marked with a sticker each time. The teacher also made sure she pointed out if we missed a night of reading. Bryce’s has never been checked. Each student also has a behavior sheet, Bryce never did. Cohen’s folder would always come home with items he completed during that day, centers he did that week…. A new library book each week… Bryce never brought home anything – for two weeks he didn’t have a library book. We had brought this up in a Parent/Teacher Conference and the ”Resource” teacher took each concern and made changes. She was the only one.

Outside of when Bryce is with the “Resource” teacher, I receive zero communication. I do not know what he does in the general classroom – if he does anything at all. I can tell you that there were at least two classroom parties that Bryce was not part of. So when we got an email saying there would be a school play; that all of Kindergarten would perform on Grandparent’s Day I had many reservations. It would be a “speaking play” where each child would be given a line to memorize. No child would be speaking alone but instead in small groups. Matt and I talked about whether they would actually have a part in the play for Bryce. I specifically told Matt that if Bryce doesn’t get something sent home when Cohen does I was going to make a call. So the day I opened their folder and they both had something for the play, I was pleasantly surprised. I checked Cohen’s first – he was to memorize a line that was three words long – whew… Not so hard. We can handle that.

Next I opened Bryce’s folder, he had a line to memorize that was at very least 7 plus words.

Let me pause right there…………………………

If you don’t know Bryce you wouldn’t know why this would be a problem. Bryce is nonverbal. Bryce does not speak. Anyone that knows Bryce – would know this about him.

I looked in his Communication log to see if I had any note from the teacher but there was nothing. Nothing else except the instruction to “help your child memorize this at home.” I honestly couldn’t believe that no thought had been given to this in the least. Matt and I decided to make it work. We had a recordable switch that we would use so that Bryce could still participate. Please note that no one at school knew that we had this at home.

I wasn’t thrilled about this option – Matt would have to speak the line but then once Bryce hit it there would be a man’s voice that would blast out. But we went with it because we didn’t know what else to do. We sent that switch to school so that he could practice with his peers when they rehearsed at school. However, it would become clear very quick that Bryce was not participating in the rehearsals. Cohen came home complaining about the play; he was tired of practicing and he didn’t want to practice anymore. He said if Bryce doesn’t have to then why should he. I was furious.

The very next day I called the Resource teacher to ask about Bryce’s participation in the play rehearsals, which she couldn’t speak to because she had not been the one to attend with him. Instead a para-educator had been with him. I also brought up other concerns (stated above) that we had moved past but this was all starting to be too much. She assured me she would find out if he was practicing and would also address my other concerns in regard to the general classroom participation. This conversation took place on Thursday before the play scheduled for Tuesday of the following week.

Then comes the big day – Grandparent’s Day and the day of the big play…. Both Grandma’s got to attend and updated me on how it went. Cohen did great! He and three other boys screamed their line. I was shocked because Cohen can be backward especially in front of a crowd. A bit later in the play was Bryce’s turn. An aide pushed him on stage and had his button in her hand. There were three other kids on stage with Bryce. Then comes the big moment….. See the picture below.

Do you see what is wrong with this picture? Bryce is looking at the button that is being placed in front of the other student. Do you see Bryce raising his arm? Let it sink in for just a moment.

It was very obvious that this was intentional; that this was planned, the child hitting the button could speak and the child in the wheelchair cannot. So what explanation could there be for this to have happened. Knowing how my conversation went with school just days before, my Mom called to let me know what happened. I was devastated. I was heartbroken. I was furious. My sweet Bryce had a moment stolen from him (without a decision or choice) and for his very first play. I absolutely could not believe it, especially after the conversation I had just had stating that I was upset he wasn’t practicing.

After having several conversations with the members of the school staff, I learned that a decision was made to not present the button to Bryce since he was “inconsistent” at practice. I was informed that they had good intentions and that they did not want to single Bryce out in front of everyone.

Let me make one thing very clear. What they did to Bryce that day is in no way different than a verbal child getting stage fright every other practice, sometimes remembering his line and sometimes not. Then choosing to have that child not participate – removing the opportunity for that child because he didn’t practice well…. This is not Broadway – this is not up for any award or prize. This was a Kindergarten play that no matter what any child did would be just as cute if every line was perfect or if you couldn’t understand anything that they said. I am pretty sure that the audience full of Grandparents would have been happy with either result. Where was that one person that stood up and said that this is NOT okay? I cannot believe that not one person stood up for him…. or at very least say that the parents should be part of this decision.

I was told in one of my conversations that “they” thought I would be happy that Bryce was being included like all other students. Then I was asked what I would have like to see happen. To address both – Bryce was involved in the only way that he could NOT participate. Even when his parents came up with a plan to make it work; a plan that everyone seemed fine with… he was still shunned. Bryce should have been given the opportunity to press the button and if he chose not to hit it then he was at very least given an opportunity. It would have been his decision and no one would have been upset if he chose not hit it.

I would have like to have seen a bit of consideration. Consideration of the fact that Bryce is non-verbal and the only way to participate was to speak a line. He could have rang a bell as the play started to get everyone’s attention. He could have held up a sign with a line written on it. There was absolutely ZERO consideration or thought put into this. I am appalled at the entire situation. To know that this is not the one and only problem we have had (but this one sure takes the cake) and we have only made it half way through Kindergarten makes me sick. There is absolutely nothing that can change this now and we need to accept it and move on. But I make one promise… we will make sure this doesn’t happen to him or any other child ever again.

All we ever wanted was for Bryce to be included. We do our very best to include him any way that we can. When it came to this play we were determined to make it work so that he had his little part in it. I still cannot believe that we had to transfer to this school because it was this place that would provide the least restrictive environment for him…. We couldn’t have him any more restricted than he is currently. Next year we will leave that school, my boys will no longer be part of that school and we will go back home to where he was accepted for two years. Back to the school where many of the staff became like family, where they never lacked in the department of communication. I was told that a handicap child (specifically one in a wheelchair) has never completed elementary school at Grants Lick. I think it is time to pave a way to change that. What better person for the job than my Bryce Man!



in•clude
verb \in-ˈklüd\
: to have (someone or something) as part of a group or total : to contain (someone or something) in a group or as a part of something
: to make (someone or something) a part of something

ex•clude
verb \iks-ˈklüd\
: to prevent (someone) from doing something or being a part of a group
: to leave out (something) : to not include (something)
: to think that (something, such as a possibility) is not worth attention

Source
http://www.merriam-webster.com/dictionary/include

On Kindergarten, Inclusion and 2014

On Wednesday the boys will be starting Kindergarten. In many ways it is so hard to believe that they are going to school. I was upset when we sent them off to Preschool but Kindergarten has been different for me. There could be a couple of different factors for this.

Maybe because Bryce was turned away from our home school, maybe because that home school waited to tell us 3 days before Kindergarten registration that Bryce would have other plans.

We had done Preschool for two years and never once was it brought to my attention that BOTH boys wouldn’t continue on at THAT school. You can only imagine how “upsetting” it was to have a meeting 3 days before Kindergarten registration informing me that Bryce would need to switch schools… OH – and Cohen would not have the option of changing schools with him. Soak it in for a minute. This was the conversation that I had just this past February 2014….. 2014! I won’t even go into the horrible comments that were made during that meeting. I am sure this person was not malicious but should learn how to approach situations differently. The example of some doctors and their bad bedside manners could really be applied to this meeting.

I cannot believe that any child would be turned away from any school --- in 2014! I guess I remain naïve in some areas because I would have never dreamed that this would have happened. I was so upset that I did contact the State Board of Education and was reassured that I could fight and win this. I was encouraged though to attend the school that Bryce was being referred to just so that I do my due diligence. So that is what we did….and admittedly……. I loved the set up. Matt and I walked in to observe a general Kindergarten classroom and the students were working on writing – that is when it hit me. As much as I was fighting for Bryce to be in the general classroom, there would be times that would be best that he is pulled out to work on other activities (such as his communication device when it comes). I would not want to force Bryce to sit in that classroom for an activity that he cannot participate in. I wouldn’t force him to sit and watch when he cannot do what all the other children in the class can do.

Ultimately we did make the choice to go with this school – it has always been about what is best for Bryce and NOT about proving a point. With that decision, we still had another problem…. I was NOT going to allow the boys to be in separate schools. After all the conversations we have had with Cohen….different is different… but different is ok…. BUT you are so different you cannot attend the same class let alone the same school! That was simply not an option. Fortunately we were allowed to apply for a “waiver” which they amended just this school year. The waiver would allow for Cohen to also attend the school since his sibling was “referred.”

I was very hesitant about the entire situation. We purposely did preschool at the home school to ensure an easy transition. Our home is minutes away from that school, but now our drive will be 25 minutes one way.

The boys did go to Jumpstart last Friday and both had a blast. We learned once we picked them up that they met some friends, had Teddy Grahams and toured the school bus. The awesome part was the resource teacher made sure Bryce also had Teddy Grahams and toured the bus. It wasn't a handicap bus so she took him out of his chair and he sat with her for a little bus ride around the parking lot. I was so happy to hear that without a lecture of inclusion and Bryce, she had done this. I already love her for that!

Later that day I had a meeting with the some of the staff to inform them on some of Bryce’s history, daily challenges and what we expect to happen with him in the coming months. I won't bore you with the details but I was more than happy with our discussion. When I left that building my entire view completely changed. I do believe we did the right thing and we will move on from what happened back in February. I just want people to know that this sort of thing still happens. I just thought our nation has come further along than that – but I have been proved wrong.

Wednesday I will send my two little miracles to Kindergarten knowing that this new school is gaining two very awesome little men. I appreciate the staff I met with on Friday for making us feel more than welcome. I can now say that I am excited for this Kindergarten Year! I couldn’t have said that a few months ago. So I will drop them off and smile like one very proud Momma as they walk through those big doors probably blinding them with camera flashes.

SDR - One Year Later *** and a Quarter Auction Event!

It is hard to imagine that we are coming up on the one year anniversary of Bryce’s SDR. It was July 9th of last year when we were in St. Louis nervous and scared for surgery number 13. Most other families who have had this surgery celebrate the anniversary with a party. I wondered if we would end up doing the same. But if I am being honest – I really don’t care to celebrate the surgery. If I am being honest I would say that I am not sure how much the surgery really helped Bryce. If I am being honest I would say that I envy others who had more success with this surgery. I had hoped that SDR would have more of a positive impact on Bryce and his physical abilities. Don’t get me wrong – I know that Bryce was physically “more involved” than some of the other children. I never expected him to be able to walk within a year like some have done. Deep down I really do believe SDR did help Bryce (just not to the extent that we thought it would). It is hard to say what changes might have happened over the past year had Bryce not had the surgery. Relieving the spasticity was successful – therefore making the surgery a success. Our success has just been defined differently.

Bryce still has very high tone in his legs and one leg is beginning to really turn in at the knee. Tone is not the same as spasticity and has to be addressed in a different way. Now we have to make the decision on addressing the tone. There is a surgical procedure that can be done to help lengthen the muscles as Bryce’s bones have grown at a faster rate that his muscles. The ortho surgeon would go in and make “x” like incisions in the muscles. This will allow for the muscle to be stretched. As you can imagine it is a painful process once the stretching begins…. But the surgery itself is less invasive than SDR.

So this is where I once again struggle. I am trying to be realistic – Bryce probably will not walk and if he ever could it would be in very limited environments. I had gotten to a point of acceptance – I had gotten excited to talk about power wheelchair training and all the places he could go with power-wheels. Then St. Louis calls to check on Bryce and they really do feel like we are in this “Window of opportunity” since he is only 5 years old. They feel we should move forward to maximize the full benefit of having the SDR.

So – for another round of emotions – I had mentally gotten myself to a place of acceptance. I am right back at being confused about what to do. I can tell you that there is NO ONE OUT THERE that wants to see Bryce make physical gains more than Matt and I. There is NO WAY we would ever want to hold him back from that chance of making those physical gains. I don’t want to seem as if I have given up – this is something WE would NEVER do. EVER!! I am just trying to find that balance of accepting and moving on. It is hard for me to put him through so much for the “what-if’s”. I wish that he was mature enough to consider the option and let us know what he would want. I would have to think though that he would want us to give him every chance. It is just so hard when you are making the decisions but he is the one having to go through all the pain and all the rehab. I know one thing for sure – I do not want to be asking myself in 5 years “what if we had just tried it.”

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The W.E. Believe Network will be hosting a Quarter Auction tonight and have chosen Bryce to be the benefit recipient of tonight's event. It continues to amaze me the amount of love and support that our family has received. From people that know us and those who don't - I thank each and every one of you. We have had an army of people behind us during this journey and many of those people have been there since the beginning. I am excited that tonight I get to see many of those people!