Posted by: searchingforsolidfooting | April 3, 2014

Kate is Deaf

I read this article a couple of days ago, and it got me to thinking and writing about what our journey with a Deaf child has been like. There is also some great advice in here about understanding the ‘capital D’ Deaf world and Deaf culture. Worth a read.

And then there was this article  today, written by a deafened woman (a hearing person who loses their hearing). Interesting take on cochlear implants and the idea of wanting to be ‘fixed’

It’s been a journey for me to have settled on whether or not to use the capital ‘D’ in describing my child as being Deaf. You see, using the word Deaf as opposed to ‘deaf’ (small ‘d’) denotes her inclusion as a person who is part of the Deaf culture. But I wasn’t sure that describes who Kate is, or was going to be, and then I realized it wasn’t for me to decide, it was for her to decide – or to show us who she is.

The small ‘d’ / big ‘D’ description of being a deaf/Deaf person is complex, and as a hearing person I feel reluctant to try and describe it here and really do it justice.  Big ‘D’ has to do with being culturally Deaf, born to Deaf parents and part of a very close Deaf community where aided hearing and use of your voice are not seen as something that are important to being part of the community (and sometimes discouraged). Big ‘D’ Deaf people could also be born to hearing parents but schooled in ASL, having attended Deaf school, and finding that their comfort lies more with the Deaf community than the hearing community.

Small ‘d’ deaf is using your voice, integrating into mainstream school, using hearing aids or cochlear implants and relying largely on your hearing to engage with the world. Often, small ‘d’ deaf people don’t identify with being deaf at all, and wouldn’t use the word ‘deaf’ in describing themselves. They are fully integrated into hearing culture.

And of course both of these, small ‘d’ and big ‘ D’ reside along a spectrum of choices, cultural priorities, language, interacting with the world, and decisions about aided hearing and use of voice.

 

Our Journey of Understanding

It wasn’t devastating for me when I found out Kate had moderate to profound hearing loss at 12 months old. I had suspected for some time and had been advocating for her to get hearing tested. It unfortunately took some convincing of her doctors. I didn’t realize the impact that being hard of hearing would have for her over the next few years. I thought with moderate to severe loss, with her cute little pink hearing aids, she would be able to hear us (‘normally’) and would learn to speak. I hadn’t had much exposure to persons who were hard of hearing or Deaf, only to my grandparents who wore hearing aids in old age (not the same). But over the next 6-12 months, I gradually came to understand that being hard of hearing was going to be a challenge for my child – and for us as a family. After her initial diagnosis, Kate continued to lose her hearing until at 20 months, she was diagnosed as profoundly deaf.

Deaf people don’t like to be described as having hearing loss, they don’t see it as a loss and prefer to be referred to as hard of hearing and/or Deaf. But you see, it is a loss in so many ways – and that doesn’t need to be construed as something negative in the long-term, but it is a loss.  It was a sadness for us, and we did grieve that loss for our child. I don’t see this as a slight against my Deaf and hard of hearing friends, in fact I know some of them would agree. I do understand their need to carve out their identify and separate it from the word ‘loss’, so in that context, I think the word ‘loss’ has be to understood to have two different meanings. When you are describing a Deaf or hard of hearing person, you don’t describe them as having ‘hearing loss’, it is offensive to them and an inappropriate way to refer to who they are as a person. But the grief and sense of loss for the family is real and has to be appreciated.

When Kate’s profound deafness was confirmed, I started to move out of having my (incorrect) expectations that this journey wouldn’t be difficult. I knew then that Kate also had serious developmental delays, and an undiagnosed rare disease to contend with as well. I knew immediately that we needed to give her access to everything possible to aid her in communicating and interacting with her world.  At that time, I remained unaware of the deep-seated philosophies and cultural identity of the Deaf community. As with most beliefs, it lies across a spectrum. There are Deaf people who believe CIs are parallel to eugenics or an act of ‘genocide’ against the Deaf community by the slow elimination of their community and language. They feel the medical community sees Deafness as a sickness to be cured and hearing parents as trying to turn their deaf children into ‘normal’ hearing children.  They feel losing their culture, their language, and being seen as persons with a disability in need of medical intervention – they certainly do not see themselves this way and consider it highly offensive.

Other Deaf people are more moderate, and understanding that more than 90% of deaf and hard of hearing children are born into hearing families and communities. They understand that with infant hearing testing, we are identifying hearing loss at birth and with new medical technology we can facilitate the ability to support/regain this human sense. They understand the families desire to be able to communicate with their child and offer the best of both the hearing and Deaf world to their children. At a fundamental level, I believe that there are many in the Deaf community who understand that cochlear implants and other emerging technologies such as stem cell treatment and gene therapy (even more controversial) are here to stay. A huge choice is emerging for the Deaf community to embrace this community of deaf children and welcome them to the Deaf community. Families (like ours) want to use both our hands and voices. Not all deaf children will learn to speak, not all will have the option of CIs, and not all families will choose technology.

It is not an easy position to be put in – having a deaf or hard of hearing child. The choices are difficult and often influenced by others, as well as our own initial ignorance and biases. I feel fortunate that we kept out options open. Kate was not an easy cochlear implant candidate because there are risks associated with anesthetic for her. We had to very carefully weigh out all the considerations and scenarios for her. A very possible choice for us was to not risk the surgery for her and choose for her to be a Deaf person with no access to hearing. In the end, we felt that giving her access to hearing and all means of communication possible was her best option. I felt confident that we could support her auditory and verbal learning. I also felt confident that we could learn American Sign Language (ASL), and find support within the Deaf community.

Learning ASL has been a process. Like any language it takes time and commitment, and a lot of practice. In our family, I have taken the lead having studied for 3 years now at night school at our local community college. Others in my family and community haven’t been as interested, or aren’t around Kate as much, so it has come to educators and others in the Deaf community to provide that role modelling for Kate.

Support within the Deaf community has been more difficult. I had to advocate very hard to get a ‘Deaf education’ for Kate. There were many from the hearing community willing to support us; our hospital and our local public health infant hearing program, these were hearing people with skills in ASL, but the Deaf community was much more difficult to access. There was no mentorship from other families, other than to find online support groups of other hearing families with deaf children, and most of those were highly focussed on auditory and verbal. The Canadian Hearing Society had many resources to offer, if you were an adult, but they had nothing for children (and still don’t). The Deaf community was also a very difficult ‘resource’ to access. It took a lot of time to meet Deaf adults who were willing to work with us and support us, and even still, meeting Deaf families with Deaf children has not happened for us. I am very grateful for the Deaf teachers and friends I have, for their support and mentorship and understanding and support for Kate (Denise, Kat, Phillip, Les, Todd), but I feel that there is a lack of resources and outreach from the Deaf community. And this is my difficulty with the strong stance against hearing families and their deaf children who are choosing technology, cochlear implants and full integration into the hearing world/culture. Some members of the Deaf community have high expectations of us with respect to the Deaf culture. They should go to Deaf (residential) schools, they should play with other Deaf kids, they should learn ASL exclusively, they should not be ‘forced’ to learn to speak, we should not be giving them cochlear implants. It is a strong position to hold when there is not much support to the hearing families of deaf and hard of hearing children to access Deaf culture.

Having her CIs has not been easy for Kate either. Because she can ‘hear’, people make assumptions about her; that she can hear them from a distance, or above the noise of a crowded room. They don’t realize it takes a lot energy for her to focus on hearing, that her hearing is digital, and that they should speak close to her microphones, clearly and face her so that she can still see their lips. Though we are grateful she has them, CIs are aided hearing, they are not the same as natural hearing.

I have chosen both worlds for Kate, and as she grows and evolves, I see her ability to communicate emerging. We are now at a crossroads with her as she has had her CIs for over 3 years and still has little language. She hears us (well, we think), she understands us, she has some words, she has some signs – and we have been ‘educating’ her in both equally. But now I see that we may want to try even more immersion in Deaf culture and ASL in hopes that we can support her ability to communicate and develop language even more. This opportunity is available to us now because she is school-aged and can attend the one and only Deaf and hard of hearing program in our local school board.

It doesn’t matter to me if she becomes part of the hearing world, or Deaf world, or both. It matters that she is the best she can be and that she is happy. I think that is what we all want for our children.

I never thought I would hear Kate speak, say ‘mommy’ or tell me that she loves me. She can do both now, in ASL and in speech.

How do I describe Kate? She is Deaf and can hear and she is deserves both worlds.

 

Julie

Posted by: searchingforsolidfooting | March 25, 2014

Random Thoughts About Jenny McCarthy

So vaccinations are in the news again, with outbreaks of measles in Ontario and in BC, and my mind wanders to thoughts about Jenny McCarthy. I hold the view that Jenny is point zero of the ‘outbreak’ of the anti-vaccination movement.  A few months ago there was an online article that was claiming she had retracted her son’s autism diagnosis. She has since come out with an official statement that discounts this article and plans to take legal action against the online media source. Irealize many have Jenny on a pedestal and believe she has raised awareness of the terrible consequences of vaccinations. I feel sad for Jenny.

 

vaccionation 2

 

Vaccinations are in the news again.

So why should we care?

To be honest Jenny influenced me – just a little bit. At the time that Jenny was standing on her soap box and proclaiming the evils of immunization, we were trying to figure out what was going on with our child and her acute illnesses, her mounting medical conditions, and her diagnosed but unattributed global developmental delay.

Kate does not have autism. In the early days of working on a diagnosis for Kate, there was some discussion about her ‘global developmental delay’ and possible autism. We kept asking the question because we were struggling to define her developmental delay and identify how to support her and what services/interventions/therapies might work best for her.

I wanted answers to help Kate and as she was still quite young, I questioned anything and everything that we put into her body – including immunizations. Kate was considered fragile and there was little known about the unanticipated impact immunizations could have on her and her undiagnosed condition; would it work, would it not, or would it complicate her medical condition. As I was exploring the question of autism, I started to read and found Jenny (McCarthy). I read her positions and I even read (scanned through) her book about how she ‘cured’ her son Evan. I am very capable of critical thinking and analysis, but I think the very exposure to all things Jenny as it related to immunizations and autism influenced my thinking.

I could blame pop culture and my occasional watching of E-Talk or Entertainment Tonight or Oprah. We can all blame Jenny in some way for the anti-vaccination movement, and that blame is coming in spades now with the discounting and a full retraction of the one ‘scientific’ article which supported her theory of immunization causing autism, and which has ignited a social revolution that is anti-vaccination. But I am not sure she is to blame. I do think she could have had more awareness that her impact as a pop culture personality would have on the broader population. I do think she had a responsibility to temper her public position with true evidence and research and support proper scientific discourse about her ideas and claims. I don’t blame her because she did what we all have done and what those of you who haven’t had to yet would do for your own children. She fought for her child. She did what she thought was best.

All she knew is that something was going horribly wrong with her son and she needed someone to listen. She needed help for Evan. She pushed for answers where there were none, and in the pursuit for answers she found a diagnosis that made sense and seemed to fit. Something that occurs more commonly than not in the rare and undiagnosed disease community. When she had that diagnosis, she did everything in her power to ‘fix’ what was wrong with Evan. She went everywhere and talked to everyone – again in the pursuit of fighting for her child. Where she went wrong was losing sight that what might work for Evan, and how she thinks she ‘cured’ him wasn’t based on evidence, at best it was anecdotal. She has a right to pursue her instinct for Evan, but she was wrong it trying to ‘sell’ it to the rest of the world, and those working with her were wrong as well. She lost her way as a mama bear and became an unfortunate advocate. Rather than working with the scientific community to prove the theory she feels so strongly about, she worked against known evidence and science and she has created a very difficult and dangerous situation for the world community.

It is hard to believe that someone like Jenny McCarthy can wield that kind of power. But when you have any element of celebrity and access to the talk show circuit with moms watching and a scary story to tell, watch out.

I really don’t blame Jenny, but I do blame people for not gathering the proper information and thinking critically for themselves. I feel public health officials and agencies should shoulder some blame for not being in front of the tidal wave of public worry about vaccinations and showing more leadership. Vaccinations are scary, you are putting a needle in your baby’s arm on a regular basis, and the public health message has not been  consistent and informative about why they are so important for well children, for chronically unwell children and most importantly, for those that can’t be vaccinated.

Parents Want Information

Your doctor tells you to get vaccinated, so you do, but that doctor/patient relationship is changing. Parents and patients are asking more questions of their doctor’s, they are thinking for themselves and misguided or not, they listen/watch social media, and celebrities with a cause, and are influenced by anecdotal opinion. This generation of parents hasn’t lived through epidemics of measles and mumps, or lost a pregnancy due to rubella. In my opinion, there is a responsibility for the public health community to better educate and increase awareness, by sharing more information about vaccinations, and what can happen if we stop vaccinating. Simply being told that they are safe by your doctor is not enough anymore. (Perhaps public health need a celebrity spokesperson of their own).

We had to suspend Kate’s vaccination schedule at one time, while her underlying undiagnosed disease was being investigated, but not because I thought they had caused autism (though I admit did worry in the back of my mind if her developmental delay had been impacted in someway by vaccinations).  Now, as it turns out, we no longer have a vaccination choice. Kate’s b-cell hypogammagloblunemia caused by her mitochondrial disease, hampers the effectiveness of vaccinations for her. She doesn’t mount the immune response a typical child does. As a result she has been re-vaccinated with vaccinations she has already received, beyond the normal vaccination ‘schedule’, in hopes that she will have some degree of protection. We’ve since learned, that the vaccination response has not been sustained in Kate, and she again has no protection.

My daughter is at high risk for contracting measles, mumps, rubella, diphtheria, pertussis, tetanus, meningococcus and pneumococcus should she be exposed.

The bottom line for me in my decision-making process is that if Kate acquires any one of these diseases she can become very sick. It was better to make her safe based on the scientific evidence than to risk her contracting such diseases which could seriously complicate her mitochondrial disease. But I no longer have a choice to vaccinate her, and because others are not vaccinating their children – what I call ‘the Jenny McCarthy effect’ – Kate is at higher risk as the rate for diseases controlled through vaccination are on the rise.

The ‘herd effect’ is less effective.

Yes, we have been protected thus far, because we have worked together as a society to vaccinate and reduce the prevalence of these diseases, but that is now showing cracks and being compromised. I think this is a point that many parents don’t realize, or don’t consider. We did not live through the time when these vaccinations were not available and these diseases killed children, or caused them significant harm, and we are now travelling the world more than ever before and visiting areas that have endemic disease. By not vaccinating your child because of unsupported claims, you are putting others at risk.  On the other hand, you probably have vaccinated families to thank for you child not having yet contracted one of these terrible diseases by minimizing your unvaccinated child’s exposure.

Not everyone has the choice to be vaccinated, and the risk of these diseases to children who are already medically fragile and who don’t have a vaccination choice can be devastating.

I understand that I am asking you to vaccinate your child to protect mine. But I am asking you to make a reasonable choice – a proven and effective choice – to protect your child also. I am not asking you to put your child at risk. Vaccinations do not cause autism. I challenge anyone to find a scientific article that can state that they do as scientific fact and published in a reputable medical journal. Vaccinations rarely cause adverse events, in Ontario last year there were 7.2 serious events for every 1 million vaccines. Measles kills 1 in 1000.

 

My last random thought about Jenny McCarthy is I feel sad for her. There is a lot of blame pointed in her direction, and she has been sorely misguided. I understand where she started in this journey, but I don’t support where she took it.

 

Julie

Posted by: searchingforsolidfooting | March 14, 2014

Moment to Moment

Disclaimer: Hoping this post reads well. The neurons are not firing on all cylinders these days.

Something happens when Kate has an acute episode of illness related to her mitochondrial disease. Life seems to slow down immensely and takes on a very focussed purpose. The analogy of ‘putting on foot in front of the other’ is the best I can use to describe the sensation. Managing her through each moment of her vomiting – cleaning her off, changing her bed, taking sheets, towels, pyjamas to the laundry room, administering meds (and deciding which ones to give), trying to settle her and repeating it all again throughout the night and into the next day. Each of those steps is a moment. Eventually deciding we need to go to CHEO for care and treatment, and absorbing that decision – that we make so often – and the implications and the stress that it brings with it – it becomes another moment. I pack her bag like I have done so often before. I cancel the week of appointments for the entire family, I call school, I cancel therapy, I cancel personal plans like the long awaited visit to the hairdresser or dentist.  I call into work and tell them I won’t be in.

Everything that is not about this moment of Kate being sick is no longer relevant. And then I dive into the world of acute illness and supporting Kate. I turn inward and rally my strength, contain my tears, and help her get through yet another round of bloodwork, procedures, and IV pokes. I sit with her and stroke her face or hold her and rock her just being in the moment. Our medical team comes and goes, our social worker, a therapist, another CHEO friend may stop by – they help to give a brief reprieve from the moment – and then the focus is back to Kate.

Those first few days when she is acutely unwell she sleeps most of the day. We are usually in a room with no windows. I turn the lights off to let her rest. It is like a cocoon and any sense of what I should be doing that day falls away as I watch her sleep. Over a few days she starts to feel better and then managing a little girl who wants out of the hospital, but still needs to be there, becomes my moment. Minute to minute, builds into hours of entertaining her and keeping her in her bed – maybe breaking things up with a walk and some visiting to the snack shop or cafeteria. The routine is usually the same. Then we get home, and life still does not return to normal because Kate is still recovering and not feeling like herself. Crying, whining, a need for constant attention become the new routine. My six year old who is more like a 3 year old. Carrying her because she wants to be held. Constantly waking at night for comfort or because she cannot sleep due to some sort of unidentified discomfort that she cannot tell me about. But the act of living in the moment cannot be sustained forever, and though she is still unwell and needing care and attention, life slowly starts to creep back in and the pace steps up. All those things that were set aside now return immediate attention. Not little things like the hairdresser and a coffee date with a friend that were cancelled, big things like the urgent priority at work, medical appointments for Kate, banking and taxes, booking summer camps, commitments made that were delayed, groceries. It doesn’t matter that I am exhausted, that I haven’t slept, that my child is still not well. Life has to start back up and demands my attention.

 

Out of Order

Coming back from the month of February has been an act of floating and sinking at the same time for me. Kate was steadily unwell from early December and undergoing regular tests investigating what was going on with her. February resulted in two typical childhood illnesses, a mild stomach flu and a common cold, that landed Kate in CHEO and caused her to be very unwell. The month was spent in and out of hospital, and sleepless due to constant care day and night. I started floating, living in the moment of caring for her – which is the only way it can be done. At the same time, I was sinking as responsibilities piled up that I did not have either the time or energy to address. Once Kate was home and feeling better, I thought I should set aside the time in the evening to catch up, but found I simply couldn’t focus because I was so tired. My brain is simply tired and thinking through the tasks of my ‘other job’ having just arrived home from work feels impossible.  The effect of fatigue is profound. I sink and the pile builds. Kate has pulled me into a pattern of not sleeping, so sugar and caffeine have become my companions struggling to find the energy I need wherever I can find it. I get done in my day what I must, and sometimes I get done what I need to do to get by. I start considering what responsibilities I can set aside.

What I know I need, I cannot figure out how to get. Respite, time from Kate to catch up on our life, to feel settled again, to get into a routine again so that I can catch up on my rest. The resources for respite are slim, and often already booked. Rogers House has been an amazing resource for us, but I don’t leave Kate there when she is unwell. I don’t feel it is fair to her when she needs us.  In fact, I did book Kate at Rogers House this weekend and was so looking forward to it, but we were bumped for an emergency admission. My heart sank.

There is a great motivator for me to get back to a better state, and that is Kate. This disease is endless and it is relentless, and above all it is predictable to the point that we know she will be sick again and soon, we just don’t know when. Our family has lived with SIFD for six and half years. It hasn’t changed, it hasn’t been cured, it is not something Kate will grow out of (my least favorite question). It is with us, it is part of our life and implicates itself into any and all of our plans. I have to find a way to deal with the sinking and the floating. I don’t think the answer can be living in the moment. I think it needs to be planned and systematic and disciplined – but how do that amidst the exhaustion and the sinking/floating feeling. Sometimes you are just to tired to know what you need.

I can see how long term caregiving wears on families and on individuals. I worry about that for me. The comment ‘I don’t know how they do it’ comes to mind, but I already know the answer to it, ‘Because you have to’.  It has been six years, what will the next six look like for me? I know I need a better plan.

How will I deal with constant trauma and stress that comes with parenting and loving a child with an ultra-rare disease which will likely take her from me?

Is it really just a matter of moving from moment to moment.

 

Julie

 

Posted by: searchingforsolidfooting | December 1, 2013

Home Alone

This is my Facebook post from 3 minutes ago:

“Sitting here (still sweaty – haven’t showered yet post run). Have finished my outdoor winter urns and am now sitting down to write a blog post. I feel chilly and though I’m not a coffee drinker, what I wouldn’t give for a warm latte right now.
(Wish I knew how to use our old and decrepit coffee maker. Then again, we probably don’t even have coffee in the house. Sigh.)”

Those of you who know Kate and who are special needs parents yourselves probably stopped at the first sentence, ‘What, she’s sitting down during Kate’s waking hours?!’

Yes I am. And the reason is that Kate is not here. She’s having a weekend sleepover!

About 6 months ago we finally said yes to the team at Rogers House who have been offering support to our family for years. Kate has been supported by the palliative care team at CHEO since she was 15 months – they were the first step to improving Kate’s coordination of care. When Kate was 18 months old, we had our first stay at Rogers House post admission. Kate was still not well enough to be home and we wanted to see how respite would work for our family. On that first stay I wouldn’t leave Kate. Instead our entire family moved into Rogers House for that Mother’s Day weekend. I can’t say it was ideal. I wanted to be home. But what it did do was give us a glimpse into what ‘the House’ was all about and the care the children received there.

Kate did not return to Rogers House until she was 5 1/2 (this past summer). I am stubborn and I am highly protective of Kate. I am also fiercely independent – with a (sometimes misplaced) CAN DO attitude. It’s not easy or natural for me to ask for or accept help. I really have to be coaxed (coerced?) into it.

I also did not want to leave Kate. I have never left her alone at CHEO. I could not imagine leaving her overnight anywhere - let alone for a couple of days. That has never happened with anyone – with the exception of evening babysitters. I felt worried she wouldn’t be safe, that her ability to express her needs – being so limited – would put her at risk, that she would be sad and upset – which wasn’t necessary (I didn’t need a break that bad I would tell myself).

I also felt guilty.

Kate is unwell so often, when she is well I feel like I should be spending every moment with her. I should be maximizing that time and doing memorable family things – or mommy daughter things with her. I shouldn’t be sending her off somewhere so that I can have a break. But I felt a tug of war of wanting to be with her and needing a much needed break from her. Guilt.

So when I do say yes to help, I’ve come to realize it’s when I am totally worn down. Last year Kate’s health was pretty unstable. Her mitochondrial disease is unpredictable and as much as we can string together periods of wellness (touch wood), we also have months of Kate being very unwell. Kate was hospitalized in September, October, November, January, March, and May of 2012 and 2013, and the in between at home wasn’t great. By June I was ready to say yes to someone.

It was hard the first time. Very emotional for me. I stayed for the first day and played and ate with Kate. I met the closely knit nursing team (I already know all of the palliative care doctors). I met the volunteer staff who prepare meals, play with the children, rock them, take them outdoors to play, and greet them at the front door. I met Kat, the amazing child play coordinator whom Kate has come to adore. It never ceases to amaze me at these young (20 something) women who have such incredible empathy, strength and love for our kids. I debriefed the team on Kate – medications she was taking – her likes – her dislikes – what she eats and how often (all the time)- how she might be trying to communicate something to them (a cry means this, a scream means that, this sound means she wants crackers, this sign means she wants to play) – we talked about bath time and bedtime – and how her bed should be set up so she wouldn’t fall out. I told them what an episode looks like and that if Kate had any distress that I was to be called right away. And I trusted that they would.

And then I left her – and I cried on the way home – and I missed her as soon as I left her. I called to check in 2-3 times that first stay. It was an overnight. I couldn’t wait to go and pick her up the next morning. I slowly realized that was more for my comfort than hers. She was fine. The staff at Rogers House are incredible. It truly is a home, and she is treated like a princess. She truly enjoys going and staying there. And after that first stay, our social worker said to me, ‘Ok, let’s book her next one.’ (Carol - never lets me off the hook).

Cooking a cake in the Rogers House kitchen.

Cooking a cake in the Rogers House kitchen.

018

‘Helping to clean’ at Rogers House. (Yes, I questioned this picture too!)

Kate at RH

Simply hanging out at Rogers House.

 

We decided as a team – Kate’s team – that keeping her familiar with the House and the routine of going there – would be good for Kate. Kate thrives when she has familiar situations, and if we kept our visits to ‘just when we need them’, the time between visits might be too long and would mean needing to get Kate familiar all over again. (I am beginning to think now this was just a ploy to be sure I stuck with the ‘program’ of getting support and respite time. I am grateful for it.)

Kate has visited Rogers House 4 times now. She is currently on her 5th stay. The team is so excited when they know she is coming. They plan around her. They know she is very active and requires full time supervision, so they plan their volunteers and try to be sure Kat is working. They keep her nurse(s) consistent so that Kate has someone familiar putting her to bed. They adjust to new routines and schedules and to how well Kate is feeling. They know her and they adore her. She is part of their family now. I think this was part of the purpose. Extending Kate’s family – getting her to know her palliative care team more intimately so that she can lean on them and rely on them. I have come to realize in these few short months that Kate needs this. She needs more support than Brian or I can give her. And that support needs to be special – as much as friends and family support her – she needs that CHEO/Rogers House support as she copes with and lives with her disease. When she is admitted to CHEO, hooked up to IV, feeling terrible, she needs to be able to have a visit from Kat and have her eyes light up. She needs Kat to know that she loves stickers and books and Dora – and trust that Kat will bring those to her and play with her and support her. She needs that extended ‘family’.

So I am grateful that I was pushed to accept this. I didn’t want my child to need Rogers House, or to need the care they provide. I don’t want to think of Kate as requiring palliative care. It’s still very hard for me. I didn’t feel like we belonged there. But I realize, Kate is not sick when she’s at Rogers House. She’s sick at CHEO. Rogers House is there to support her throughout her disease – and to support us.

So I am sitting in a quiet house – and it is hard the first 24 hours. When Kate is home, either Brian or I are ‘on’. There is no downtime with Kate, or time when she doesn’t need us – or demand us. There has been little rest between her hospitalizations and time when she is unwell at home. But it is hard to settle into the quiet. I am still not skilled at going to bed on time or getting a good night’s sleep when she is not here. I miss her terribly, and listen for her at night, even though I am grateful for the break. So far we have had Kate stay for 48 hours (2 night, 2 days). The first day I want her home, and by the second day I am ready for her to stay longer.

So far we have stayed home during her visits. This time I am actually home alone (which is so nice). The nurses always ask me what I did with my time when I arrive to pick Kate up. ‘Nothing really – I cleaned, organized, did errands, worked on my to do list’, I reply. They are disappointed, they want me to go for a manicure or pedicure or massage or spa day. But honestly, I feel relaxed by getting things done that I can’t do as efficiently with Kate here. I am starting to plan what weekends without Kate might look like and less focussed on missing her. I think eventually, Brian and I might try a weekend away together during one of Kate’s stays. Apparently that is something couples do. :-)

For now, I am happy to have the time and space to breathe and exhale.

Julie

Posted by: searchingforsolidfooting | November 27, 2013

Celebrating Small Steps

Small steps for some are huge milestones for us when it comes to Kate.

baby steps

I am grateful that I have Jack who has shown me what it is to be a ‘typically’ developing child – you know – the one who follows (somewhat) the stages of development outlined in all of the many parenting books available. When he was a baby I had underlined and highlighted and tagged pages in my What to Expect – The First Year book. Then as he grew into a toddler, I moved onto The Toddler Years. I marvelled at all of the things he could do, the milestones he met (on cue or ahead of time), and was excited for the things to come. When Kate arrived, I dug out my books and started following along again – ready to celebrate and track and plan out how I was going to guide her and maximize her development with the right toys and playgroups and baby sign language.

When we realized that Kate was not a ‘typically’ developing child. When I started to recognize that something wasn’t right, that Kate was falling further and further behind of ‘typical’, I put that book away and stopped referencing it. Eventually, I threw it out.

And then I got sad and I grieved. And I am ok in telling you this because I am not embarrassed to be sad, to have grieved loss for my child, or to be grieving still at some moments. I have come to learn – my tribe, my special needs and medically fragile parent friends, social workers, some wonderful kids have taught me that it is ok, that being sad is part of this journey.

I still feel sad when I think of what Kate might be missing in life, but less and less do I find myself focusing on what she can’t do and more on what she is doing. Small steps that are huge celebrations.

I love Dora!

dora

Today I bought Kate a DVD for her Christmas stocking. It’s a Dora Christmas video and I was so excited I almost danced at the grocery store. Watching TV, being interested in a show/program, being able to relate what Dora is doing with Boots is huge for Kate. She started showing interest a couple of months ago and it has really caught on with her. Dora videos, games, books, dolls, etc. She is a true little girl with a passion.

I can remember long hospital stays at CHEO – even just recently – when well intentioned volunteers or child life workers would come into our room and offer to put cartoons on for Kate or a video to distract her during procedures. “She doesn’t watch TV” I would say. They would they look at me and not know what to say. What child doesn’t watch TV? What is she going to do for long hours at CHEO? (And it’s funny, because of the parent propaganda out there right now is not to watch TV). I felt like I had to make an excuse or explain that she was behind developmentally and is Deaf, so TV just didn’t interest her.

Well, she’s watching now and I couldn’t be prouder and more excited for her. She sways along to the songs. Claps her hands when the theme song starts and points at the screen when Dora ‘asks’ her a question. She is even signing ‘Dora’, not easy because she has to fingerspell (spell each letter with her fingers).

Yup. Totally proud of this milestone.

Not many people get it. Those that are close to Kate do. Recently we were at our regular appointment with nephrology getting weighed, measured, blood pressure etc. Kate is now cooperative with the nurses (she has gotten to know them) and patiently extends her arm for the ‘squeeze’ as she calls it(“keeeez” she says and signs), and that’s not even the milestone that was most exciting. Being at nephrology, you can imagine that we have to give a urine sample. Until recently, this has meant that I would have to get a sample at home by taping a ‘pee bag’ to Kate as soon as she woke up, wait for her to pee and hope the bag didn’t leak, rip the back off (like a horrible waxing), and then put that sample into a cup to drive into CHEO. This time – a couple of weeks ago – I suggested to the nurses that we might be able to pee in the container that the children typically use in clinic. Kate has been #1 potty trained since August and I thought we could give it a try.

She took that container and marched to the bathroom signing ‘potty’ the whole way. Announcing to everyone in the clinic and waiting room what she was about to do. And she did do it. Peed in that container that we proudly marched back to the nurse. Full display, I felt no need to tuck it away. ‘Yes people, here is our pee, we filled this cup and we couldn’t be prouder!’.

And the best part of celebrating this milestone? The reaction of the CHEO nurses. They danced with us, literally broke into some sort of quick step/tap dance thing and clapped in excitement for Kate. They knew this was a celebration. They knew that this did not follow the book or the list or the guidelines for children her age, but they knew this was special for this 6 year old girl.

And you know what they found to celebrate? Dora stickers! 

I am starting to love milestones – as tiny (microscopic) as they might appear to others, to me they are causes for big celebration and joy. Each and every little one.

 

Julie

 

 

Posted by: searchingforsolidfooting | November 25, 2013

We Can Do Better

Let me start this post by asking this question,

When is this ok?

“There’s mounting evidence that several B.C. schools are restraining children who act out and putting them in isolation rooms” (CTVNews)

 

Are B.C. schools using isolation rooms to restrain

“parents from across the province who reported that school staff used various forms of physical restraint and seclusion against their children, many of whom have special needs” (CTVNews)

“some children were locked alone in small rooms, including closets and stairwells. The length of isolation ranged from five minutes to more than three hours” (CTVNews)

The answer for me is never. It is never ok to treat anyone like this, especially our most vulnerable and especially children.

The fact is – and I have lived it - schools have a difficult time keeping up with the needs of children who require more specialized attention than their peers. The ‘not-typical’ kids, the ‘medically fragile’, the ones who don’t fit the norm. These children don’t fit in the regular system, but they are forced in there like square pegs to round holes, and resilient as they are, they do their best work within a system that lacks the infrastructure and supports to truly educate them.

It is called ‘integration’ and it is full of IPRCs and IEPs (if and when they are used) and endless advocacy, but what it should be truly called is, ‘we’ll do what we can, but it won’t be consistent across schools, administrations or teachers, and at best it will be haphazard and you’ll have to make do’. It’s not integration, but as parents to these children we work with the schools to make it the best we can for our kids.

What is resulting from the lack of support and lack of parental engagement (in many cases)  is that children with special needs who have associated behavioural issues are not being managed properly and teachers – who for the most part are amazing and doing their best with what they have been given – are using inappropriate measures to manage these children.

It used to be frequent trips to the corridor, or principals office, but now…

Isolation rooms? Restraints? Holds?

For elementary aged school children?

REALLY

How do you think this child feels? What emotions do they have when this happens to them? A child who is already challenged and likely feeling isolated? A child who cannot regulate their emotions as a ‘typical’ child might be able to and is already distressed.

“Forms of restraint included having arms twisted behind a student’s back, being held in a chair, having wheelchair straps put around a student’s legs, and being put in wrestling holds” (CTVNews)

A nursing friend of mine, who works with psych patients, told me these measures are rarely used with adult patients. And isolation rooms are unheard of.

When did this become ok for our children. When did we all stop paying attention. When did we start the slippery slope of justifying this – no matter how frustrated we got. When did we stop asking for help, or seeking other measures.

“parents weren’t even told about the practices used on their children”

This is beyond bold, and  the part that upsets me the most personally. I know who Kate’s teachers are, I know her EA, her classroom ECE, her itinerant deaf teacher. I know the principal and assistant principal and the office staff. I am regularly at her school. But I don’t know each and every teacher personally and I know there are many adults who come in contact with Kate over the course of a school day who I am not aware of. Kate can’t tell me how her day was. She can’t tell me if a particular teacher said or did something that upset her. She can’t help me to protect her or advocate for her as a ‘typical’ child could.

Let me be clear that I trust the adults who are with her. But reading an article like this heightens my awareness and instinct to ensure I know exactly what is going on with Kate and how she is being ‘managed’ at her school. Even if I think I know – I want to be sure.

Trust is something parents of special needs children don’t have the luxury of. You have to KNOW.

This situation in BC has made that abundantly clear.

WE CAN DO BETTER.

Julie

Posted by: searchingforsolidfooting | November 22, 2013

The Littlest Wish

The ocean and pure joy!

The ocean and pure joy!

When you have a child who is not well, your life changes. Your day to day routine adjusts to accommodate the unexpected, your moment to moment thoughts are often preoccupied with planning and worry, and the goals and dreams you had…change.

I find it hard to accept help, to accept offers of generosity and kindness. I am still trying to understand why. I think it comes from a place of fierce independence and a misplaced ‘I can do this’ attitude. The truth is we all need help – and we all need to help each other – and we need to be willing to accept it with a simple ‘Thank You’. The reason I am telling you this – to preface this post – is that it took me a long time to say a simple ‘thank you’ to Kate being granted a wish. To be aware that this was something that I should embrace for her.

There were many reasons why I put this off, Kate wasn’t well enough, Kate wasn’t old enough, Kate wouldn’t appreciate the wish, Kate couldn’t express what her wish would be, there were other kids who needed wishes more than Kate (so wrong).

It took the help of Kate’s palliative care social worker to simply say – “you are doing this”. She made the call to Make A Wish and nominated Kate and our family. She got the ball rolling with enough momentum that I couldn’t say no, and had to simply say ‘thank you’.

The Make A Wish concept is elegantly simple. What do you wish for? What do you want to do, or experience, or who do want to meet, or be most in this world? For the children who participate in Make A Wish wishing seems to come easily. They know what they want to do most.

Kate’s wish was simple, but it was also very thoughtful. You might know from following this blog that Kate can’t express her wish, but she clearly has things and people in her life that bring her joy – and as her family, Jack, Brian and I talked about what type of wish Kate would make if she could and decided we would make it for her.

Kate’s favorite things in life right now: Dora, stickers, gymnastics, school, swimming, her friends (tall and short alike) and her family.

The best wish seemed to be time with her family in a wonderful setting where she could swim as much as she wanted.

It was simply expressed and we put it to Make A Wish to come up with the design.

We were overwhelmed at what they came up with and the endless generosity of the incredible Make A Wish Eastern Ontario. They put together something that we could have never have done on our own – which is absolutely the point of Make A Wish – and they made us feel like the most important family in the world.

Kate’s wish was granted as a fabulous family get away to the Bahamas to a resort where she would have the ocean to play in, pools to splash in, waterslides to slide down, fish to watch, turtles to laugh at, dolphins to hug, and the sun shining down on her. It was an amazing get away – too short (maybe a month would have been better…or forever).

Kate woke every morning with laughter and giggles. Make A Wish had made it possible for her caregiver to come with us – and sleep right next door. Kate would bang her on door in the morning ready to go. She was the first one into her bathing suit (and it had to be the blue one with the flowers), even before we had had breakfast. With her ‘entourage’ (us) in tow, she would be ready for those slides and pools before they were even open.

I guess sunshine, fresh air and the ocean truly do have a healing effect because no less than 24 hours before we were to head to Bahamas for our trip, Kate was at CHEO on IV trying to get her through an episode of inflammatory cascade resulting from her mitochondrial disease. The day before our flight was to leave, I was on the phone with Make A Wish, crying – worried that we wouldn’t be able to make this trip and that Kate would be feeling too unwell to enjoy it. But working with her medical team at CHEO we were able to get Kate feeling well enough and I made a judgement call late in the afternoon, the day before we were to leave, that we would go.

Travelling with a child like Kate is not easy. Her illness can strike unpredictably with acute symptoms that require treatment and management in hospital. Make A Wish and CHEO had worked together to set up an advance team that had been briefed on Kate’s medical situation at a hospital in the Bahamas – the nurse in charge of Kate’s care, should it be required, was from Montreal Children’s Hospital. We knew we would be in good hands if we did need help, and Make A Wish ensured that travelling with our bag of medications would not cause any issues either.

So we went. And it was wonderful. And I felt joy and relief in watching my kids relax and play together. We really took advantage of every moment.

Water Water Everywhere!

Water Water Everywhere!

Kate and Julie3

Kate learned new signs for ‘turtle’ and ‘dolphin’. And it was really wonderful to see her enjoy those experiences. We truly were living a wish because it was not something we could have done on our own.

Kissing 'Echo' our dolpin

Kissing ‘Echo’ our dolpin

It is for you too.

If you are thinking it’s not. It is.

You have been through a lot. Your child has shown more strength, stoicism, and courage than anyone else you know and they deserve to have this special moment and to be celebrated like only Make A Wish can. There are people out there who want to help, and you can say ‘yes’ and ‘thank you’, and believe me, everytime you do it gets a little bit easier.

 

Julie

 

 

 

 

 

Posted by: searchingforsolidfooting | September 16, 2013

Mitochondrial Disease Awareness Week September 15-21, 2013

Mito week

MItochondrial Disease Awareness Week is September 15-21, 2013.

It’s a time for mito to be recognized, to raise awareness, and often a time for many fundraising events for mito to be held as well.

Mito is suspected to affect 1 in 6000 people. Mitochondrial diseases are difficult to diagnose and there is no treatments or cure.

I’ll be messaging (on FB), tweeting @solidfooting and blogging (here) about mitochondrial disease this week. I’ll also be changing my porch light bulbs to green ones – LIght Your Porch Green - in honour of those living with mito and those that have left us. I invite you to do the same.

Here is Kate’s mitochondrial disease story as told on her Caring Bridge site:

At 4-6 months of age, I started to notice that Kate’s motor development was behind and that she did not seem to be paying attention to sound or making normal baby babbling noises. She was not reaching typical developmental milestones for her age and was still very floppy, as a newborn would be. Kate was also experiencing other health issues such as chronic anemia and episodes of unexplained illness and fever. I also noticed that she did not appear to be responding to my voice or to sounds from her baby toys. The first few years of Kate’s life she cried all the time and she barely slept. My days were spent holding her and trying to console her the best I could.  Our GP did not seem to have any answers for us, and was at a loss of what to do.  Several trips to the emergency department only resulted in long waits and being sent home with little information, or investigation, and no change in Kate’s status.

When Kate was 9 months old, at the urging of a pediatrician friend, we engaged a consultant pediatrician to help us begin a broader investigation into Kate’s health.

In November (2008), Kate was hospitalized at CHEO for ‘irritability’, fever, and cyclic vomiting. This was the fourth time Kate experienced the symptoms which we have come to call her ‘episodes’ . It was during this hospitalization that an intensive examination of Kate began diagnostically.
The ‘episodes’ began in June 2008 and have increased in frequency and intensity.  The pattern is typically the same;  vomiting, intermittent fever, she stops drinking and eating, discomfort/pain, irritability, extreme lethargy lasting 7+ days. She has very little strength or energy and is unable to perform the skills that she usually does, like walking, talking, eating, It takes Kate 1-2 weeks to ‘normalize’ after a typical episode. The acuteness of these episodes began the investigation and diagnostic odyssey into Kate that lasted over four years. Kate has been hospitalized countless times and has undergone many invasive tests – MRI, CT, bloodwork, urine, lumbar puncture, gastric tests, ultrasound, x-ray, muscle biopsies, bone marrow aspirate. She has become a human pin cushion.

On November 7th, 2011, Kate was diagnosed with a rare form of mitochondrial disease called SIFD. Sideroblastic Anemia, Inflammation, Periodic Fever and Developmental Delay. This is a recessive genetic disorder that has no treatment or cure. To date there are only 15 known cases, 4 of these children (including Kate) are alive today.

At 13 months, Kate was diagnosed with permanent sensorineural hearing loss caused by her mitochondrial disease. In February 2010, after symptoms of additional hearing loss, it was determined that Kate’s hearing loss has progressed and is now severe to profound in both ears.  After very careful consideration due to complications from anesthetic, Kate received bilateral cochlear implants at the Hospital for Sick Children in Toronto in November 2010.  The implants were activated at CHEO on December 13, 2010. She is undergoing intense therapy to teach her to listen and speak.

Since 9 months of age, Kate has had more than 30 ‘episodes’ requiring multiple hospitalizations.  Kate has been seen by doctors at The Children’s Hospital of Eastern Ontario (CHEO), Sick Kids in Toronto, McMaster Health Sciences Centre, and The Mayo Clinic in the US.  Her blood and tissue have been studied at research institutions around the world. We have experienced what the medical literature calls a ‘medical odyssey’. Kate is also responsible for the diagnosis of several other children, bringing closure to other families who were searching for a diagnosis.

Kate is now part of the Coordination of Complex Care pilot program at CHEO to help coordinate her care and better manage her episodes.  She is also a palliative care patient at Rogers House.

Kate’s medical condition includes: - Global developmental delay – delayed myelination on MRI – Sensorineural hearing loss (profound) – Cyclical vomiting + and hemodynamic instability with episodes of unexplained fever, illness and pain - Sideroblastic anemia – Nephrocalcinosis and hypercalciurea  – Chronic constipation – Immunodeficiency (Hypogammaglobulinemia) – Post-anesthesia complications – Spinal syringomyelia (syrinx) – Osteopenia – Pili Torti – Ataxia – Weakness and Fatigue

When Kate is feeling well she walks independently, she loves to ‘swim’ and go to her gymnastics class. She loves to go on bike rides, riding behind mom in a trailer. She is communicating with gestures, sign language, and a few words.  She attends kindergarten at our local school thanks to the support a one on one educational assistant, and resources that allow her regular rest periods.

Many of Kate’s days are compromised by severe fatigue. We manage Kate’s energy by limiting her exertion and conserving the energy she does have. Kate cannot walk long distances and she uses a stroller to get around (soon to be a wheelchair). She wears and AFO brace to steady her right leg, and on days when her ataxia is particularly bad, she will wear a helmet to protect her.

Kate also has wonderful periods of feeling ‘well’, where her disease seems to be less aggressive and where her physical abilities and energy seem more typical. These are wonderful days, and we are excited when they stretch into weeks or months.

It is sometimes exhausting to relay Kate’s story as it is complex and ever-evolving.  We are keeping family and friends updated on her health and diagnostic situation via our journal entries on this site.

Thank you for visiting and for your well wishes, support for our family, and positive thoughts and prayers for Kate. She is a beautiful, loving, intelligent and stoic little girl, and deserves the best this world has to offer.

Julie, Brian, Jack and Kate

Posted by: searchingforsolidfooting | September 13, 2013

N=1

beach solitary

 

Walking alone – trailing my feet through the sand – feeling the sun on my back – letting the ocean lull me, calm me.

Alone with my thoughts – pensive. Taking a moment in time – this unexpected, unplanned, unanticipated, unwanted time – to breathe, consider, exhale.

Enjoying the solitude, and then realizing. I am alone.

JD 2009

 

As you may know from reading this blog, Kate has a rare form of mitochondrial disease called SIFD, which stands for sideroblastic anemia, immune deficiency, fever, and developmental delay. At the time of diagnosis, after an incredible diagnostic odyssey, Kate was N=1. Within several months of sharing the information about the recessive genetic disorder that causes this disease, 14 more cases were found, spanning the last 20 years. Only 4 of those children are alive, including Kate and none are in Canada.

Although mitochondrial disease is the broader diagnosis for Kate. Being diagnosed with a mitochondrial disease is similar to being diagnosed with ‘a type of cancer’. There are many different types of the disease under this very broad disease definition. Finding out who you are and what your mito is within that broad description is something only few mito families ever achieve.

When you are a parent, whether of a disabled child, a child with an acute illness, or a typical child, you seek out community. You naturally gravitate toward the park, playgroups, coffee shop seeking the moms like you – getting little sleep, carrying a baby, worrying about typical baby and toddler issues. Parents of children with medical conditions need this community even more, and support groups and very strong advocacy groups have started out of necessity to get important services in place, but also as a means for families to connect, share their stories, support one another in navigating the health care system, and support one another in navigating and understanding their child’s disease. It is group think. It is parallel thinking rather than going it on your own, and it is important to families survival and ability to get through the ‘dark’ times they will inevitably have.

I remember the early days with Kate, the first 2-3 years of feeling absolutely isolated. Struggling with her health issues, navigating the beast of our medical system – mainly alone, trying to stay on top of her ever evolving medical conditions in the absence of a unifying diagnosis. I wanted and needed a community to connect with. I wanted to share with another mom the struggles I was going through, to get advice, to learn from what they had learned, and to have a shoulder to lean on if it was there. Within the first 18 months and into her second year we had a social worker assigned to us, but it was clear her role was mainly to assist with funding related questions and less about supporting us.  The isolation I felt was difficult for me. I am not an introverted person, I still hung around with my mom friends in the school yard, and would share what was happening with Kate, but none of them could relate. They were sympathetic and offered words of support, but they were not living it, and could not understand what I was going through. (To be honest, I wasn’t even sure what I was going through).

 

What I really wanted was another mom (or dad) whose child had the same disease as mine and not knowing what disease my child had, I felt that would never happen for us.

 

When Kate was finally diagnosed with SIFD, I was excited. We had crossed a threshold and there was now possibility of better understanding how to treat her acute episodes, research could get started to look for treatments, a cure might even be possible at some point since the gene that causes SIFD had been identified. I was looking forward to connecting with other families, hearing their stories, reaching out, and sharing information about how their child’s disease was managed. For many reasons, this did not happen. None of these children were in Canada, the one other child who was died within a short time of being diagnosed. Some of the families did not want to connect, and physicians weren’t always great at facilitating families getting in contact. This all changed for me in April 2013 when I received a phone call from a Canadian doctor. He had a child he had been treating, who has SIFD, and he wanted to speak to us.

I was stunned, and excited, and hopeful. This was the first time a doctor had reached out to us personally, and not through our medical team. He explained to us that this child had suffered undiagnosed for over a year, the child had been sent to the NIH (National Institute of Health Rare Disease Program in the US) for further investigation. At the very end of the visit, just before returning home, a doctor who was aware of Kate’s case saw similarities and considered the same diagnosis for this child. After genetic testing, it was confirmed that this child also had SIFD.

What then transpired was what I had been searching for, a family to connect with. The family wanted to connect with us, they wanted to share stories. We emailed several times and had one long phone conversation, sharing our experiences about our children, remarking on similarities and noting differences. Their child’s disease was more severe than Kate’s and as a result different interventions were being tried. Our medical team learned from those experiences and as a result Kate’s acute treatments changed. I could now say, “the other SIFD family”, and even though we were now only 5 families worldwide, I somehow felt like we were part of a group.

A few weeks ago, after a brief email silence, I heard from the mom. Her child had passed away due to complications from SIFD.

I was stunned. Heartbroken for her and the enormity of the loss of her child.

I rationalized that her child had a more severe form of SIFD, but nonetheless I can’t help but think of how and when this disease will further impact Kate’s life. I felt fear and shock and a deep sadness.

I feel alone again. At the same time, I feel even more determined to reach out to the other 3 SIFD families try again to share with them and establish some connection. Not a connection about mitochondrial disease, hospital navigation, special needs, medical fragility, schooling, therapy, deafness, funding, special equipment etc. I have built up that community in spades, and am grateful to the friends I have in those communities.

I am grateful for the gap they fill for me, for the frank understanding they have of the life we lead, and the compassion they have for the things still to come. For what they share with me. Thank you to those reading this – you know who you are.

I still feel the need to have that connection to SIFD, for others who have Kate’s disease. Who can talk about the treatments they have tried, the research underway, and the uncertainty of this disease. To see myself reflected in their journey. To share that bond no matter how tenuous.

 

Julie

Posted by: searchingforsolidfooting | August 20, 2013

Swimming In Pee

Yes I am, I am swimming in pee. The last few weeks have been mopping up pee, being peed on, and endless loads of laundry. I am sure my house smells like pee (or my biodegradable environmentally friendly cleaning spray).

urine

 

Kate is soon to be 6 years old, and I am determined (despite any physical limitation such as hypotonia, neuropathy, developmental delay, language delay, spinal syrinx) to potty train her. My reasons are not entirely selfish – yes, I would love to be ‘diaper free’ at some point in my life. It would be wonderful to not have to carry supplies, to avoid accidents, to remove myself from the Easter Seals incontinence supply grant. I would love the freedom, similar to that feeling when Kate stopped using formula (at age 5), and gave up her soother (5 1/2). I would love to not have to worry about packing enough, or forgetting wipes, or carrying an extra change of clothing. (Recognizing that potty training will require all of this for still some time to come). What has really been driving me on the potty training agenda is Kate. She is a little girl, despite her size and her delays, she is growing up and becoming her own little person and I want to help realize this in one of the most fundamental ways. If she can achieve it, I want her to be able to be a ‘big girl’ and to be part of the big kid club of wearing cute little panties and not cumbersome pull ups. I want her to be able to achieve the same right of passage as other children (far younger than her). I want her sense of independence to be built up and for her to recognize there are things she can have control over in her life.

All of those hopes for her, wrapped up in the goal of being potty trained.

OLYMPUS DIGITAL CAMERA

 

The journey so far has been full of false starts, expert opinion from various therapists, teachers, parents, reviewing of the special needs literature out there on potty training, discussions with the medical experts about Kate’s physical ability to potty train. I never would have thought there would be so many methods and explanations about how to get one person to pee into a receptacle.

Jack potty trained at age 15 months and it took 2 attempts.

This has been at least a year and more in the making – from beginning to think about it to planning the how and the logistics of it all. Waiting for the right cues/signals from Kate (you’ll know when she is ready – who made that brilliant statement more than once to me!). I truly believe all of the false starts have led to this moment – these past 4 weeks – of actually seeing some results.

Kate has had more than a few successful pees in the potty. After several years of practice and observing other kiddos at preschool, she understands the toileting routine. In fact, she loves the routine of pulling her pants down, sitting (for 3 seconds), wiping (for a few minutes), washing of hands and stating (via ASL) that she is ‘all done’.  About a month ago, I set the goal of using the month of August to really give intense potty training another shot. This time it was cold turkey for pullups. They were off, accidents or not. I invested heavily in training underwear – you know the cotton waffle kind that weigh 5lbs when they are wet! I rallied my team (Brian,  our new caregiver, even Jack) and we came up with a plan and an agreement that potty training was the focus for Kate. We established a schedule and committed to the no pull-up rule. In fact, it has been bare bum around her for much of the last month (Kate that is).  My hope was to have a well established routine before school started – and hope that school (her EA) could keep the routine and results going. (Heaven help them if they don’t!).

Things did not start smoothly. The accidents were constant – the floor has been washed countless times, and at the end of all this the living room rug will likely get tossed. Kate is also VERY distressed when she has an accident. She spent the first couple of weeks searching for pullups to put on so she could pee, but what that made me realize is that she can hold it in. That was something we were not clear on because of her hypotonia and neurological weakness. Knowing that she could hold it – upwards of 20 minutes if she needed to (way longer than me!), showed us that she did have control. The next step was teaching her how to let go.

I never thought the simple act of peeing would be so upsetting. Kate literally panics when she has to go. She gets upset, cries, and screams. She will start to pee and then we’ll rush her to the potty, where she will cry and need to be consoled. She sticks her little hand underneath her in an attempt to hold it in – which only results in pee spraying everywhere. The whole act seems very distressing, but it is getting better. After many tears (and screaming) and hugging it out on the potty, she has managed a few successful results and now claps for herself when she has managed a pee. She is getting it – and I am so happy for her.

I wish I could tell the other special needs parents out there what the formula is. I looked for it myself for years. The truth is there is none. It is trial and error – readiness - false starts – frustration – tears – defeat – small wins – then regression. My best advice to read up on the information that is out there, but to trust your instinct. You will know when the time is right, and you once you decide to seize the moment, make a commitment to it. It will not be perfect, it will take a long time, it will feel like forever – you may even need to take a break. In the end it will pay off. It will come. It can be done. And it is a celebration.

I know this is only the very beginning of the journey for us – but it is a journey of independence that I never thought Kate would achieve and I am grateful that she is learning to do this for herself. Something as simple as peeing in a potty has made me very happy.

 

 

Older Posts »

Categories

Follow

Get every new post delivered to your Inbox.

Join 853 other followers