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

It’s A Good Day Today

People often ask how Kate is feeling.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Julie

A Random Post

There are so many potential posts swirling around in my head lately. I want to capture them all, write about all of them, be eloquent and exciting and detailed about all of them – but I fear losing them. So I am going to make an attempt at dumping them all here – as short summaries – in one blog post. Hope it works for you. (Hope it works for me).

 

Summer Fun and Challenges

Summer is supposed to be fun. Care free, memorable, full of family time.

Care free is difficult when you have a medically fragile child and one who has developmental challenges like Kate. You never have your guard down, even when you seem to be in the most ‘relaxing’ of of ‘summer fun’ situations, e.g. at a friend’s cottage, at the park, swimming at the local pool. You are constantly watching, managing and worrying. And ‘constant’ in the key word here. There is never a down moment. There is no leisurely time by the pool, dock, lake – and there is no time when your aren’t planning ‘what’s next’, e.g. food, medications, feeds, energy management etc.

It is not a normal life and summer is not summer fun. We have good memories – we enjoy ourselves with friends and family (especially those who ‘get it’ and help with Kate), but it is not easy and sometimes we long for routine and for a break.

I feel a small amount of guilt as I reflect on our summer. A family holiday gone awry due to an episode of Kate’s SIFD, having to adjust things for Jack constantly and not spending as much time with him as I would have liked, feeling like this summer slipped away somehow.

 

Breaks

Child care costs and arm and a leg. Many parents off set this with camps in the summer. But what do you do when you 7 year old child can’t attend the ‘typical’ summer camp? What do you do when you are paying your specialized one to one caregiver 8-9 hours a day so that you can go to work and make money  – to keep your job and pay your caregiver?

In our case, we do just that – we work to keep our wonderful caregiver and we try and normalize Kate’s life an find her opportunities to attend day camps – like other kids.

Kate has had two amazing camp experiences this year. And we are so happy for her to have had the opportunity that other kids have had. She attended a Deaf camp this year for the second time. Yes, her caregiver attended with her, and yes she got tired and needed that extra support. But she loved it and had such an amazing time with other children who are Deaf and hard of hearing from the community. It is a small community, but the children embrace one another and there was so much support for Kate. A wonderful time for her.

And then she attended gymnastics camp for two weeks, and yes it had ups and downs for a child who has an energy disrupting disease that might not be able to keep up with the ‘regular’ kids. But she was fully supported at OGC, and our experience there has been amazing. Kate has been a gymnast since before she could walk independently and there was a never a question from OGC about how she could participate. They simply asked what she needed and they made it happen. Kate went to camp 2 full weeks this summer – drop off and pick up – no mom involvement needed -and it was hard for her, but also fantastic. Fantastic. I will be forever grateful for the OGC team.

And then there the wonderful friends who ‘get it’ and offer to take Kate to the park, or for a swim, or take a turn being vigilant at a cottage, or chase her around the yard at a neighbourhood barbecue. And we take it in stride, but are grateful for the break. The break in vigilance, the break in the constant humming of watchfulness.

 

Ignoring CHEO

And I mean this in the most respectful way, but not having to engage with CHEO unless absolutely necessary has been great. Clinics slow down and don’t want to see us, and the demands are a little less. Kate was sick in July  and needed to be hospitalized (ugh), and she had weekly transfusions of her immunogloblulins which required us to be there for a few hours a week (ugh), and she needed bloodwork  a few times (ugh). But we did slow down on our interaction and visits a little and it was nice.

 

Episode

What would summer be without an episode her SIFD becoming acute??

Really, doesn’t everyone have their only 2 weeks of summer holidays interrupted by a visit to the emergency department and an acute hospitalization?

Eff.

Enough said.

 

Preparing for School

Such a love / hate relationship. Get us back in to routine. Now!

Dreading the constant to and fro of managing Kate’s symptoms and her health. And this year, starting at a new school and worrying about what that will look like and how that will be managed and what the issues might be that will come up (cause you know they will  and no – they are not the ‘typical’ kid issues).

I have been working since late July to get school transportation sorted. It hasn’t sorted yet and school starts in less than 36 hours. Sigh. My special needs community is probably right, this won’t be sorted out for a a week or so and I will likely be driving Kate myself.

We have a new teaching team, therapy team, specialized services team, principle etc. How to direct and manage all of them and be sure Kate has the best experience she can.

Point of reference: I send Jack to school with a solid lunch and back pack stocked with school supplies and end my worries there.

I know the daily phone calls from school are about to begin and I am ready. Not dreading, just resigned that this is the price to pay to have Kate attend school. And I have my moments – many of them – when I wonder if sending her to school is ‘worth it’, then I remind myself of the break and the need for her to at least be around other kids that are somewhat close in age to her.

 

And so this was summer.

Sunny days watching Kate ‘swim’ and slide down the slide at the local pool.

Watching her ‘tube’ behind a boat for the first time.

Marvelling at her being the first into the lake – every time.

Listening to her giggles as we exhaustingly give into her endless requests to go the park in the late evening.

Watching her skin tan and bronze (with sunscreen) and leave a tell tale tan line where her NG tube changes sides each month.

Watching her suffer through a ‘cottage’ weekend with an episode and finally deciding the cottage week of fun was not to be this year.

Letting Jack tow Kate behind him in her own kayak – and feeling a warm glow knowing he has his sister’s back.

Checking on Kate in the late evening before we go to bed and listening to the contented snoring of a child who has had busy day.

Knowing she has had a solid summer of happiness and realizing that this is a gift. Her 7th summer with us.

 

Happy summer 2014 everyone!

 

Julie

 

 

 

 

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

 

 

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.