Feeling Included.

Bloom is a fantastic special needs, medically fragile, medically complex parenting blog from Holland Bloorview and edited by my friend Louise Kinross. (Incidentally, if you like them please consider supporting them as they run solely on donations).

This is a recent article that was posted, and I wanted to share it with you here and let you know my thoughts about it.

The first time I read the Invisible Mom I didn’t think that was me. I understood it and felt strong empathy for Aaron’s mom, but I didn’t think I felt the same pain and angst of exclusion as she.

But then I started considering how Kate is ‘included’ and ‘excluded’, deliberately or not. I reflected on the moments where her differences stand out so starkly and where I hustle to make excuses for her…

…”she can’t hear you”

“yes, she’s 7…but she’s more like a 3-4-5 year old”

“she is signing or saying this that or the other thing”

“well, she could come to the party…but maybe I should come too…to help…and she’ll probably have to leave early”

She’s the kid who leaves early from school, is often sick, wears the funny helmet, has a tube in her nose, doesn’t speak, sometimes hits the other kids, is often in her wheelchair stroller because of fatigue, runs away and won’t come back, doesn’t understand when you ask what her favorite color is (but she can tell you her name and how she is!!). Some (few) make an effort to include Kate, but playdates, birthday party invites, get togethers with the girls is not really part of her life sadly.

She loses her peer group annually as others grow and mature and learn and she is left behind. Her reality is that adults are her friends – and the few children whose parents facilitate them staying engaged with Kate.

Do I feel left out? Sometimes, yes.

Am I sad?  Yes, I grieve ‘loss’.

More importantly, does Kate feel left out? No.  Is she sad? Nope.  She has her friends at school that will change year to year, but that she values nonetheless, she has her friends at Rogers House (Myah, Moon Pie, Buffa, Mat-teww), and her adult friends (Christine, Kat, Erin, Kara, Adrienne, Vanessa, Steffi, Tall Steve, and more) that she loves. She is developing her own friendships and through those connections, I am finding my peer group of moms and friends as well. A different peer group than what you would expect, but a very valuable one.

I don’t think I am invisible mom. I think people see me. If they don’t I usually make them see me and Kate.

I wish for so many things for her. I wish for playdates and friends and movies and outings and independence.

I do feel sad sometimes. But Kate isn’t. Not yet. For now she is happy. Like Aaron’s mom I hope she never has to understand or become aware of the pain of invisibility.

Julie

 

A

Falling Into Fall

I love the change of seasons in Canada.

I love the chill and coziness of the winter months. Cuddling under blankets, sipping warm drinks by the fire. Nesting inside our warm home while the snow flies. (I even love running in the snow).

I love spring. Shedding sweaters and turtlenecks for another year. Getting down and dirty in the garden. Loving the freshness and newness of the season and anticipating the summer months.

And summer – lazy days – a break from it all – a complete change in routine (both good and bad) – less time at CHEO – warm sunny days – cute little sundresses – flip-flops on my feet.

But fall is my favourite. Fall feels like the new year to me. It feels like the start of things – back to routine (yes, I like routine), cozy soups, cozy sweaters, the changing colours, a crispness in the air that requires just a little bit of bundling up, the warmth of a fall sun that takes the edge of a chilly fall day, getting back to activities for Jack and Kate…

 

Fall Leaves

 

Fall is a very significant season for life with Kate. Kate was born in October (2007). She was diagnosed with hearing loss in November (2008). She received her first hearing aids in November (2008). She was diagnosed as Deaf in October (2009). She received bilateral cochlear implants in November (2010). She was admitted for her first long stay at CHEO in November (2008). She visited the Mayo Clinic in October (2009). She received her eventual diagnosis of SIFD in November (2011). Kate started school for the first time in November (2012).

There are so many anniversaries to reflect on in the fall. It is an emotional and weighty season and it is a season of promise.

I wonder what changes, events, new milestones this fall with bring for us.

 

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

 

Kate’s Story – Loss and Discovery Part 1

Today, November 8, 2011 is the second anniversary of Kate’s bilateral cochlear implant surgery at Sick Kids in Toronto.

When Kate was only a few months old, I suspected that something was wrong with her hearing. She did not turn to my voice, and wasn’t startled by loud and unexpected sounds.  Our family doctor was reassuring and told us that Kate had passed her infant hearing screening test, and her hearing ‘should be fine’.  It wasn’t, at 13 months of age Kate was diagnosed with a moderate loss in her right ear and a moderate to severe loss in her left ear. She was fitted with hearing aids and we began to work with her on auditory and verbal therapy skills.

This post picks up on the summer of 2009 when Kate was 22 months old and tells the story of her journey toward becoming a Deaf child and the challenges, ideals, values, and decisions we discovered as parents and as a family during the journey which continues to this very day.

I had begun suspecting that Kate was not hearing us as she should with her hearing aids. Then she slowly started to be ‘non-compliant’ with her hearing aids; she wouldn’t wear them, she’d take them out regularly, she’d refuse to put them on in the morning. The most disturbing sign that something was different was Kate’s loss of her words. She had begun to speak, and said ‘baba’ for bottle, ‘papa’ for Brian, ‘up up’ when she wanted to be picked up. Slowly, as she could no longer hear herself, these words faded away as gradually as they had started. These were all signs that Kate was no longer receiving information from her hearing aids.

It is difficult to assess a non-verbal toddler for progressive hearing loss. They don’t cooperate in the sound booth, which would be the usual method of assessing hearing loss, and they can’t ‘self report’ what they are or are not hearing. It is up to the parents and the audiologists to ‘guess’ at changes in hearing. For a few months we went back and forth with her audiologists about what she was hearing and not hearing, e.g. did she turn to that sound because she heard it – or did she see the person or thing making the sound? One day we performed a highly scientific hearing test as we sat with the auditory verbal therapist, who also suspected Kate’s hearing loss. Have you seen those ‘hand clapper’ noise makers? They make an infernal racket – highly popular at sporting events or in children’s loot bags from birthday parties. The therapist stood directly behind Kate with one. She was completely out of her peripheral vision, and she wailed away on the plastic clapper. I almost jumped out of my seat – Kate showed no response. The AVT paused, and she did it again, this time as close to Kate’s right ear as possible. Kate didn’t budge. Kelley and I looked at each other – and we almost laughed aloud at the ridiculousness of Kate not responding to the sound. But that hilarity quickly gave way to a moment of comprehension that Kate did not hear that sound.

Kelley called the audiologists into the room and repeated her ‘clapper experiment’ for them. They agreed that Kate would need another BERA to assess the severity of her hearing loss. It would be scheduled as soon as possible. It was November 2009, and we had been through so much with Kate and were so focussed on her health issues, that hearing loss and speech had fallen off our priority list. Brian and I used to joke that hearing loss was the least of our worries.  We felt it was being addressed and we weren’t focussing our much stressed resources there.

Now hearing loss had become front and center again as we faced the possibility that our child was no longer hard of hearing and needing sound amplification, but that she was profoundly deaf and how would her world change. We didn’t know anyone who was deaf. We didn’t understand the challenges she might face. We only knew a little sign language having adopted some baby sign and worked on some ASL skills with Kate. What would being Deaf mean for Kate?

 

February 2010 – Sedated BERA

In February 2010, Kate was scheduled for a sedated BERA to assess her progressive hearing loss. As with most tests requiring a general anesthetic, we consulted with her medical team about any other tests or procedures that might be required by her specialists. Hematology was still tracking her severe anemia , which they had now identified as an idiopathic sideroblastic anemia (I’ll catch up on her blood disorder as I pick up on Kate’s story in future posts) – idiopathic meaning, ‘of unknown origin’, so they were requesting another bone marrow biopsy.

[There is another story around the February 2010 general anesthetic, and I’d prefer to write about it in detail in another post. But what you should know is that Kate had an episode in January, and looking back knowing what I do now, I am certain she was not physically well enough to undergo a general anesthetic so soon after her episode.]

At CHEO, when your child is in surgery (which a bone marrow biopsy is considered), you sit in the general waiting room on the third floor. There are other parents there, and you have no idea what their child is there for. You steal furtive glances wondering how serious their child’s condition is based on their facial expression. You duck your head when their child’s surgeon enters the room, hoping the best for them as they go into the hallway for a short conversation about how their child is doing.

Brian and I have sat in that room before – waiting for Kate and worrying. This time we were calm. We knew the suspicion that Kate’s hearing loss had progressed was quite likely, but we were also in a state of denial and thinking that perhaps we were mistaken. We were also not worried about the general anesthetic as she had had them before, but as I write this, the knots in my stomach and memory of our reaction to the events that were about to unfold come back with full force.

After about an hour, Kate’s audiologists Sophie and Marie – two women who we had been through so much with, and to this day are trusted friends and champions of Kate – came to get us from the waiting room. We expected to step into the hallway and hear how Kate was doing in recovery and what the results of her BERA was. Sophie asked us to step into a little meeting room at the back of the waiting room. In that moment, that breach of not entering the hallway as all the other parents had, but rather being led to a small meeting room at the back of the surgical waiting room – every eye on that room was on us – and every parent knew, as we did, that we were about to receive bad news.

Kate hearing loss has progressed to be profound”. It was as simple has that, a few short words and our world – Kate’s world – changed again.

Nothing could have prepared me for the absolute visceral and emotional reaction that I felt that day in that small room at the back of the surgical waiting room. I felt like a weight was crushing my chest – or maybe it was my heart. I felt tears well up and run down my face, and sobs escaped from me. I was embarrassed at my reaction and overwhelmed by its intensity. I was embarrassed to react this way in front our audiologists, but then slowly understood that they had expected this – or at least anticipated this – and I was grateful at their foresight in providing us with some sense of privacy.

Brian and I had no questions, we just felt sadness and a profound sense of loss. Kate had lost something, something precious had been taken away from her. Something she would never have again. In that intense moment so many images and thoughts raced through my mind. Would she ever say ‘mama’, would she ever hear my voice again, how would this affect her life? We had so many questions and very few answers. We didn’t want to leave that little waiting room, because we knew it would signal the finality of the conversation. We were scared and we were mourning. I thought it was one of the hardest moments of my life and I can remember it like it was yesterday. We had less than 24 hours to absorb the information before Kate would be admitted to CHEO again with a significant reaction to the general anesthetic that triggered a serious episode.

 

Julie