It’s A Good Day Today

People often ask how Kate is feeling.

“She looks great today. How is she feeling?”

          “She’s so energetic today. How is she feeling?”

                             “She’s so cute. How is she feeling?”

It should be an easy answer. “Yup, it’s a great day. She feels great”. On occasion I can say that, because it is true. Other times, I just say it because it is easier than the real answer.

Mitochondrial disease is unpredictable. Kate can look terrible in the morning when she wakes up and I can fret and worry about sending her to school or about going to work. Sometimes I may choose to keep her home and am thankful that I did because she continues to decline, other days I take the ‘risk’ of sending her to school and she does just fine once she is there.
Kate can also wake up full of beans and I am convinced she is going to have an amazing day full of energy and ability to attend to what is being shared with her, then I end up with the 10:30 a.m. phone call from school that “Kate isn’t doing well…she is very tired…she is seeking a lot of comfort and is very pale/seizures/crying/shaky…”
It’s been a little over 2 hours and what could have been her day – what should have been any typical 6 year olds day – has ended.

So the answer to “How is she feeling?” is a complicated one. It is variable and it can change, and Kate can’t let me know.

I am often Kate’s voice, and I am the one who will let others know how she is feeling. I interpret her colour in the morning, if she feels warm to the touch, if her face is just a little pinched looking, or if she is smacking her lips (which tells me she is nauseous). I see the shakiness, the loss of her words – both ASL and verbal, and her apparent loss of comprehension. I see when she is struggling to grasp the most basic cognitive task, ones that on a “good day” would be easily accessible to her. I see her left eye droop and her right leg drag. I am the one who can truly tell how she is feeling.

It is one of the constant struggles with mitochondrial disease. The ups and downs of energy and having “A good day”.

Even with Kate’s medical team – who trust my mama instinct and intuition, I will have to correct them when they remark “How good she looks today”. “Actually”, I will say, “It’s not really a great day – she is having X Y and Z symptoms today”. And they stand corrected and we move on as if Kate has just spoken for herself and told them how she feels.

Kate can’t express how she feels – how her energy is – how shaky she feels – that today, she can’t seem to do that “potty” thing that all of the adults in her life are so keen on because her muscles just won’t respond for her. Or that she may seem frustrating behaviourally, but that it is her only way to cope with how terrible she feels.

I am her voice. I see the look on her face of fear, pain, worry, stress – the looks that others don’t see as easily has her happiness and joyful looks. I am her voice when it is not a good day.

And I send her out into the world without me constantly by her side – having me voice for her how she feels for others to better understand. I am told it is part of ‘letting go’ just a little, letting her create and live her own life. But I feel guilt and fear. I feel she is only partially ready. And I wonder how to organize myself around the unpredictability of her disease and how she is feeling.

This all became more acute for me this year as Kate now has a driver to transport her to and from school.
Yes, I am told they have police record checks and that they are bonded etc. But I am still putting my vulnerable, cognitively challenged, low verbal child in their hands. And she can’t tell me or report anything back. Did he drive to fast? Was he on his cell phone? Did he talk to you? Did you feel safe? Was it a good day?
She has no voice to tell me – I am her voice.

And she arrives at school, with an entirely new teaching team who don’t know her well yet, new friends and a new environment. “Was today a good day?” isn’t a question I can ask her. “How are you feeling?” isn’t a question her teaching team can ask her. And she doesn’t have me with her, so she doesn’t have a voice to tell anyone that she has pain, or discomfort or is so fatigued she could fall over.

It is the dilemma special needs parents live with. And beyond being with her every moment, I am not sure there is an easy answer for it.

 

Julie

100 Pegs In A Board…and other important life skills

I had a completely different post in mind to write tonight when this article caught my eye on Facebook, http://drzachryspedsottips.blogspot.ca/2013/07/teaching-functional-skills.html

It’s refreshing to read a post about teaching, learning, skill acquisition and what is really important – and how that often gets lost in our efforts to set measurable goals and standards for our special needs children in order to assure ourselves that they are indeed ‘learning’.

This article made me think of a few experiences in working with different therapists, and teachers, to help Kate learn, to teach her, to facilitate skill acquisition. I often had moments (and still do) where my mom instinct tells me that ‘this is not right’, that what we are teaching her isn’t important, that it is the wrong direction for Kate. Even more so, I had those moments of intuition and realization that Kate wasn’t ready for some of the skills that were being ‘taught’ to her and that her lack of cooperation and ‘inability’ to attend to the task were simply demonstrating that she wasn’t yet ready for that type of learning, or that they method used for teaching wasn’t one that would work for Kate.

Kate and I have worked with 11 different therapists over the past 5 years. She started with occupational therapy when she was 9 months – we paid privately as the early intervention list she was placed on had a one year waiting list. When we did access occupational therapy and physiotherapy for Kate, we never seemed to manage to hang on to particular therapist for more than a year. Caseloads would change, therapists were switched around, and Kate (and I) had to adapt each time. I lobbied hard to keep a strong therapist when I met one, but it took me some time, and my own learning, to understand who was good and who wasn’t as good.

* Unfortunately this lack of continuity has persisted as we have entered public school, and I have to mention it because the lack of continuity for a deaf, non verbal child with multiple special needs and medical complexity absolutely astounds me (insert rant on bureaucracy here).

I remember one early OT session when Kate was supposed to bang on a drum with a wooden stick (she was 10 months old). Kate had just learned to sit – barely. She had (has) very low tone and had to prop herself with one leg while sitting, leaning to one side so she wouldn’t topple over. Kate didn’t seem to be enjoying the activity the OT had planned, but the OT insisted that Kate participate (as much as you can insist to a 10 month old). This session she had brought along a therapy table and chair, the type that had a cut out in order to slide a chair into the table. The chair itself had belt straps to ‘help’ Kate sit and keep her focussed on the task. At the time, I thought this was a good idea. Let’s really get Kate to pay attention. I was eager for her to ‘learn’ to acquire skills. I was still in that mode of defying her disease and it’s impact on Kate, and I wanted to fix her still. Whatever the OT suggested (and she had good intentions) I was willing to try and to pursue in an effort to help Kate catch up.

In retrospect, it probably wasn’t such a great idea for Kate and more importantly it wasn’t what Kate needed. That chair caused her great stress. It was clearly uncomfortable for her as it lacked proper support for her, and she was so upset by it that any learning moment was lost. The skill of banging that damn stick on the drum was lost to tears and screams and flailing arms.

 

I understand that sometimes we do need to push through and work on things that are not easy for Kate. But now these teaching moments are carefully planned. They are built around skills or activities that Kate is already familiar with, or supported by activities that she finds easy. We then carefully plan to ‘stretch’ the difficult activity so that Kate learns to push through her frustration for a short period of time. At the same time we are careful to gauge where Kate is on that particular day from an energy point of view, and what her disease will permit her to be capable of. I am VERY grateful to the incredible auditory verbal therapist that Kate has. She has known Kate the longest and she has taught me how to slowly teach skills to Kate. How to nurture learning in Kate and how to approach teaching her. I know she has learned a lot from Kate at the same time, and she is still learning. There really has never been anyone like Kate (she has told me), and we have to be ready to adapt. It’s like pennies in the bank – someday they will pay off.

It’s like pennies in the bank – some day they will pay off.

 

This is something I have held close to my heart since the first time Kelley (Kate’s AVT) used this phrase. There has never been a truer phrase when it comes to teaching Kate. Kelley and I worked closely for more than 3 years together (1-2x/week) before Kate started to show signs of comprehension of language or used her first ‘word’. Now as the words and other skills are coming, albeit still very slowly,  we celebrate more frequent small wins along the way. It took a long time to get our reward, and it still comes slowly and often after long periods of waiting.

I remember wondering if Kate would ever say ‘mama’, and if I would ever hear Kate’s voice. I remember wondering what Kate’s voice would sound like. It really wasn’t that long ago a year, maybe a year and a bit. And when ‘mama’ happened (first sign and then in speech) I glowed. The word was important, but the skill was also amazing. The skill to make that word, to make herself understood to her own mother. Amazing.

And that’s where this article truly resonates with me and reminds me of what I have come to find the most important in this world of therapy.  Yes, there are skills and they are important in setting the groundwork and framework for learning. Our children will find them difficult and we have to support them through it, recognizing how they learn, and pacing them so that we are meeting them when they are in readiness to learn and matching them in what they are capable of learning day-to-day. What is equally important is learning to live in this world with the challenges they have.

I would love for Kate to learn her ABCs, to sing the ABC song with me and learn the little tune that goes with it, but right now what is more important to me is that Kate learn her name and how to spell it. I would love Kate to learn the days of the week and the months of they year, but my focus is on her understanding what rain is, what the sun is, the wind, the snow. I would love for Kate to say ‘I love you’, to be able to tell me where she hurts or what hurts when she is sick.

 

How Kate learns has been a roller coaster of learning for me. A skill acquired, then lost, then picked up again, only to regress during/after an episode of her disease. It is a daily challenge, and has taught me incredible patience (which I am still learning). It has also given me a real appreciation for how Jack learns. I am grateful to him for showing me how ‘typical’ learning and skill acquisition occurs. Although every child is different, there is a true pattern and rhythm to how we learn – especially to how children learn. I remember being amazed at the words Jack would have at a young age, the concepts he would understand, the joy in discovering and exploring with him in those very early years when learning seemed to be so fast and furious. I am careful not to compare Kate and Jack, but at the same time it’s only natural to do so. Jack’s learning was effortless, Kate’s has not been.

What is really important in learning is understanding how to navigate in this world of ours, whoever we are and wherever we are at. For Kate this is understanding that it’s not ok to run into the street, and not so much that she can sort shapes.

I am still going to work on that shape sorting with her, and color matching, and drawing lines, circles, faces, and rolling/cutting play dough. I still understand the need for the fundamentals, but as she nears the age of 6, I want her to understand and be able to interact with her world more easily and independently.

 

 

Julie

 

 

The Last Day of School

This was Kate’s first year in public school. I remember registering Jack for school – we went to the school in February and signed him up for the following year. It was simple, straight forward, typical.

Kate’s process of signing up for school was a herculean task of information gathering/sharing, analysis of pros/cons, assessments, meetings and paperwork. We started in January interviewing schools in collaboration with a consultant from Children’s Integrated Support Services, then we had many meetings and conversations with the school board about Kate. Following this were assessments of Kate, and a lot of paperwork. Her school file soon reached capacity and she hadn’t even started yet.

All the process still led us to a what was a false start from the beginning – because of health concerns, Kate didn’t start school as planned. When we did finally decide that school would work and was the best place for her, there was a significant amount of work in getting started. More meetings to determine the supports that would need to be put in place Kate – which at minimum would be a full time educational assistant (EA) to support her physical, medical, and communication needs. Assessments for occupational therapy and physical therapy would come much later – in the mean time, we did the best we could advising the school on supports for Kate from a physical environment point of view. We knew it would not be perfect, our goal was for Kate to get started and to be safe. We thought the rest would follow soon thereafter.

Junior Kindergarten this past year served as an experience and education for all of us, not just Kate. Kate did very well, considering her poor health this year and subsequent frequent absences from school. Her absences didn’t help her with maintaining consistency, but she had a wonderful EA who kept her mornings structured and predictable – both very important constructs for Kate to be successful at school. Her itinerant deaf teacher provided knowledge about how Kate’s classroom environment could be better managed to make her learning experience optimal. I also attended several meetings to share my experience and knowledge about Kate and how she could be best supported. I knew the school had not had a child like Kate before (and likely never will again). While my goal was to help them help her – it was also to ensure things got done the way they would work best for Kate. I would say for the most part, things went acceptably well. There were bright lights among her educational team, and there were others that we had to manage a bit more. What I was not prepared for was the constant vigilance and advocating that would required to ensure Kate had the proper support and that her team did learn and adjust to her needs. I didn’t have a binder for school like I did the hospital, but after the first 2 misses the school made, I pulled one together.

Slowly over the first few months of school, a pattern of strength and predictability grew. Kate got to know her team intimately, not just being comfortable, but truly understanding what was being asked of her and giving the constructs, familiarity and support to do her best to respond to the demands placed on her. Kate’s team also got to know her, how she communicates, what she does and does not understand, her intelligence and capacity to learn – though different from a typical child. They learned her patterns with her health, when they could push her through a task and when she was too fatigued to continued. A balance was struck – and it was working well.

The problem with predictability in the school system? It doesn’t seem to be valued. Just when we thought we were cruising, had the school organized for Kate’s needs with teachers, itinerants, EAs, therapists all in place, sweeping changes are made at the Board level.

We found out at the end of Kate’s year, with less than 2 weeks of school left, that she would be placed in a classroom with 2 teachers sharing the position, 2 early childhood educators supporting the teachers, 2 separate educational assistants assigned to her (one for the morning, and one for the afternoon), and her itinerant deaf teacher had been reassigned to someone else resulting in a new itinerant for Kate come September.

It was unacceptable, and I learned quickly, and much to my dismay, that the bureaucracy has a little concern for the children – even those whose challenges far outweigh the ‘constraints’ of the system. Human resource priorities, system pressures, or no excuse at all, were the reasons given to me for unacceptable and sweeping changes to Kate’s educational supports for the coming year.  The most famous quote of my many meetings with school and Board officials was, “I know nothing about your daughter, I’ve never read her file”. This after a one hour conversation concerning a human resource issue specifically related to Kate!

I learned a long time ago to not take no for an answer, that there is always a way – even when you are told there is not. Kate taught me that and I know it to be true. So I have managed to change back some of the things that we knew would not work for Kate. I’ve managed to change a few things, and I am still working on the rest. What is sad in all this is that I have to do this. That we need to be under this type of stress. That at school, a place where Kate should feel safe and secure and where her best interests should lie – they don’t, (unless I fight for them).

All that aside, Kate’s year was wonderful. She learned to be at school, and we learned the importance of her being there, especially at a school in her community where the children on the playground know her, where her brother attends, where there are familiar parents/adults dropping off and picking up. She is part of her community, which for a child with a transient peer group and special needs, is very important. This is how we ensure, in part, that she is part of her community.

I know Kate is a challenge, and that moving her through ‘grades’ will be difficult. Her peer group will change from year to year, and it’s unlikely she’ll never have a consistent group of friends or classmates that she will move along with. That makes me sad for her, it’s another little loss in a long line of losses, but what is amazing is that Kate doesn’t seem to be phased by this.

I don’t know if Kate will ever move on to Grade 1, or if she’ll be able to stay at her school. A more comprehensive special needs program might be what is needed in the future, possibly one with a strong ASL component to facilitate better language and communication. As with many things about Kate, this remains to be seen and we won’t know until we know.

While other parents worry about who their child will have for a teacher next year, or will they have friends in their classroom. I worry whether Kate will be understood by her new team of teachers, will she be safe, will she have the support she needs, will her teachers work to make her truly part of their classroom and accommodate and integrate her by actions and not just words, how often will I be called to come pick her up, and will she make a friend (a real friend).

I am handing over a little girl who has little ability to communicate, and who is sick often and many times with little warning. with adults who don’t know her well. I have to have faith in the adults who will be with her all day that she will be safe and that they will work to understand her quickly and recognize her strengths as well as her limitations. I am already preparing for the meetings and plans that will be required to support Kate the way she needs to be and is entitled to be. I am constantly amazed at how many people will sit around a table to work out the details as to how one little girl can attend kindergarten. I’ll have my binder with me.

For now though…we’ll set that aside and let summer wash over us.

 

Julie

 

The Effectiveness of Hallway Conversations

My world with Kate is both small and huge at the same time. Kate doesn’t have many friends, she doesn’t go on regular ‘playdates’ or off to activities on her own – instead she goes to school where she mainly works one on one with adults, she has therapy with myself and adults, she has a respite worker, and she visits the hospital to be poked, prodded, examined, and intervened with. She spends a lot of her life waiting, being touched by others, being pushed in therapy, and waiting while I have dicussions about her with all of these people.

Because of Kate my world is complex and requires quick thinking, advocacy, patience, ability to communicate in many ‘languages’ (medical, therapeutic, educational etc.) – even to learn a new language (American Sign Language).

I take advantage of every opportunity to engage with the adults in her life be they medical case conferences about her, clinic appointments with one of her 15 different specialists, phone conversations with consulting medical specialists from around the world, scheduled therapy sessions, scheduled educational meetings (with teachers, EAs, LSTs, principal, Board representatives, placement and review committees), discussions about community therapeutic care, or even conversations with our local community centre to place her in a basic preschool swim program. Nothing in Kate’s life follows typical procedures or processes. Nothing is easy.

But sometimes what I find most advantageous are the unanticipated and unplanned ‘hallway meetings’.

Yesterday, I had to walk the length of CHEO from Kate’s afternoon auditory verbal therapy session to another wing of the hospital to sign paperwork from metabolics/genetics, and then head to the cafeteria for a casual meeting with CHEO public relations (more on the purpose of that meeting next week). In the course of that short walk, I met Dr.P (Kate’s metabolic/genetics physician) and we had a brief chat about Kate, how she is doing, recent symptoms, our planned meeting next week – then I ran into one of Kate’s formal social workers at CHEO from the neurology department (we are now with palliative care social work at Rogers House), we talked about Kate, how much she has grown, her diagnosis, how she’s feeling etc.  Finally, I reached my first destination and signed the required paperwork, and went to the cafeteria for my meeting. As we sat down, Linda the cafeteria lady came over to say hello – Linda is a kitchen worker at CHEO who has a Deaf daughter and she knows ASL. She has struck up a little friendship with Kate and always comes over to say hello, asks how Kate is doing etc. I finished my meeting and made a quick errand up to the clinic area of  CHEO where I ran into 2 of my favorite phlebotomists – these ladies can get blood like nobody’s business – they asked how Kate was doing and asked if they would be seeing her soon. When I arrived at my clinic destination, I ran into Dr.Major, Kate’s complex care pediatrician who we are overdue to have a clinic appointment with. She asked how Kate was doing, recent symptoms, how did our TO visit go, asked me to follow up about scheduling a clinic visit with her etc.

Without going on…I think you get the picture. Hallway conversations as spontaneous as they are, can be very effective.

– I got to touch base with Kate’s metabolic/genetic doctor about how Kate was doing (he hadn’t seen her in several months). We discussed the current research going into Kate’s disease. We touched base about a meeting he would be having about Kate with her doctors at Sick Kids. And we planned to have a clinic visit.

– I got to touch base with Kate’s complex care physician at CHEO, briefly mention some concerns about Kate and planned to make an appointment as soon as possible with her.

Effective and efficient.

Today, I had a very similar experience at Kate’s school. As they are getting used to Kate, and we are getting used to them getting used to Kate, there have a been a few hiccups along the way. The latest hiccup has caused a lot of stress in this house for the past 72 hours. I didn’t have time to meet today, but I let the principal know as I entered the school that I would like to meet. I walked Kate to class and ran into the principal in the hallway – and there we had an unplanned ‘hallway meeting’, and I think we got much more done than any other scheduled meeting I have had at Kate’s school. We were efficient (because it was unplanned and we both had places to be), it was effective (a credit to both of us), and because it was impromptu (not to say I hadn’t been giving things a lot of thought) the filters were off and I feel like we were very upfront with one another. We agreed to follow up ‘in clinic’ (i.e. her office with the other educational professionals involved with Kate).

I left feeling better. A hallway conversation can do that.

 

Julie

 

Unplanned planning

Kate is in a bit of an episode. It’s not a full blown episode – that would be the extreme fatigue, lethargy, vomiting, irritability, pain etc. etc. But she has other episodes that I describe as ‘mild’ or ‘moderate’. Their scale of severity is less, but there are still symptoms that affect her day to day functioning that can be difficult to manage.

So we are in a bit of an episode. Kate is ‘shaky’ and unstable with her walking. This morning she fell down a few steps at the bottom of the stairs simply because her legs would not cooperate. She fatigues easily and this is mostly a problem at home in the evening when she just can’t handle her day any longer – no more stimulation please -but it is not yet time for bed. It is also posing a lot of problems at school. Her educational assistant has called me or written a note in her communication book 4 out of the last 5 school days to report Kate as being ‘difficult to manage’, ‘not engaged’, ‘tired’, ‘unable to complete her regular tasks’. She’s even used the word ‘regressing’. Basically Kate is either lying on the floor or crying. All of these things get my attention and make me worried. And so the strategizing begins…

Are we entering a full blown episode? If so, is my life organized enough to handle days at CHEO? Should I call and give them a heads up? Is there something I should be doing to support Kate better? Maybe she should not go to school? Maybe school is over-reacting? What if Kate picks up a bug from school while she is in a mild episode?

The unpredictability of Kate is one of the most challenging aspects of her disease. Medically and developmentally there is simply no day to day predictability about how she will be. It makes ‘life’ planning almost impossible. I wonder how many families of special needs children and medically fragile children ‘life plan’. Have they found a way to make it work? Do they live day to day, and moment to moment? What do they do with those magazine articles that espouse ‘living for the moment’? Do they laugh at them like I do and think ‘wow, if you only knew’.  I think special needs parents would have a lot to say to that ‘living in the moment’ life coach or self help author.

Just when you think you’ve got it, you’re on track, there is predictability or at least things are ‘under control’…and you start to consider a return to work, maybe a weekend away, or a dinner out…it all falls apart again, or at the least a ‘pea is put under the mattress’, or a ‘wrench thrown into your plans’.

And this is what it is. This is how it is. And if you are a planner, a list maker, someone who likes to know what is happening day to day – maybe even week to week, it can be very stressful and you need to quickly adapt and become a ‘living in the moment’ person.

When I begin to think long term about anything, or start to think I can make some plans because Kate’s health has been stable, the universe decides to remind me of my place in this world and slaps my hand.

I am secretly plotting a possible return to work – formal work – you know, the 9-5 paid stuff (as opposed to the highly skilled, challenging and absolutely unpaid work I do now). I have shelved any aspirations for my career. ‘Tanked’ is the word I use for that. It’s just not possible being Kate’s mom. But for our family’s financial health, a return to work would be a good thing.

And then weeks like this happen. Where Kate is not ‘sick’, but she’s unwell. Where she can’t handle a typical day. Where her needs are above and beyond what those around her can help her with. And I wonder, “Why do I bother to plan. And what is the new plan?”

Julie