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).

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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.

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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.

 

 

A Screaming Kind Of Day

I have to admit I’ve ‘borrowed’ the title of this post from a children’s book I was recently given by KK’s auditory verbal therapist (AVT). She gave it to me to read after a particularly bad ‘screaming day’ with Kate.

Screaming days are intense. They are difficult, frustrating, and can be embarrassing. The scream KK has is very high pitched and very frequent. She uses it in any and all settings – including in public. At home I can employ the techniques that we have been coached to use by a behaviour therapist. I can also wear an industrial pair of headphones to help lessen the intensity of the scream. This may sound funny (they certainly look funny), but believe me they can be a godsend after a morning of screaming. I honestly feel like my ears are vibrating – possibly bleeding. I am not unsure that I am suffering hearing damage and possible hearing loss myself from KK’s screaming. She sounds like a wounded dolphin. It is ridiculous how that sound can come out of such a little girl.

In public the scream is a whole other matter.  I sometimes avoid public settings if I know it will be a bad screaming day. Sometimes I forget myself and we venture out anyway, and those can be occasions that I regret. I have developed a thicker skin since KK. Comments from well meaning (or not) people don’t upset me as much. Having said that I can still feel the looks, the eyes following us, the shaking heads, and the whispered comments about ‘that child who is screaming’. It happens, and whether mal-intentioned or not, the looks and stares hurt. I am that mom with the uncontrollable child, the misbehaved child, the child who just won’t listen. I want to say back to them, “It’s not her fault, she can’t help it”, but I don’t. I apologize to friends and to family – even though I know I don’t need to. I sometimes try and muffle KK’s scream with my own hand. I rush through errands and have left groceries behind.  And I feel bad. I know the screaming is uncomfortable and horrible. Believe me, I know.

We are working on the screaming. I started employing my own parenting discipline and addressing the scream whenever it happened. “No KK” I would say. “Stop!” emphasizing the word with an ASL sign for ‘stop’. Last year, KK’s nursery school teachers would try and ignore the scream and then reward KK when she stopped screaming. That technique seemed to get us somewhere and the scream seemed to settle down. In recent months it is back with a vengeance.

Enter the child behaviour therapist from the Ottawa Children’s Treatment Centre. Sarah called me a few weeks ago. I had forgotten that a child psychologist who had done an assessment of Kate early last spring had referred us to a behaviour therapist to help with the screaming. Sarah called at exactly the right time – just when I and the end of the rope were starting to meet up. I have to admit I was sceptical as to what help Sarah might have to offer us. She was a young lady, no kids, and really what would she know about stopping a profoundly deaf child with global developmental delay from screaming. Huh.

After the first meeting with Sarah, I found myself telling her that she had impressed me and that I thought working with her was going to “be a good thing”. Sarah assists children with developmental disabilities and their families by providing mediator training in Applied Behaviour Analysis (ABA) and Positive Behaviour Support (PBS), both of which basically mean managing the child’s environment and teaching new behaviours.

In KK’s case the plan is to track what triggers her screaming and to avoid environments that may trigger the screaming, especially on ‘high volume’ screaming days. The other goal is to structure ‘free time’ (e.g. in the car, during meal prep, during groceries) that Kate has so that she does not scream for attention or out of boredom. Sarah’s take on KK’s screaming is that it is both for attention and sensory (she likes the feeling/sound). Finding other means of sensory input for Kate is challenging and something we are still working on. A lot of the training to get KK to reduce her screaming is to teach her other means of getting attention.  This is a pretty big challenge with a child who has few words and requires a consistent team approach among everyone in her life. The good news is that KK’s team is always up to the challenge – in that I feel confident.

As for the screaming, well I try to remind ourselves that KK is doing her best and that at one time we had limited communication. I try to stay calm and not get frustrated, though the screaming days can be exceptionally looonnng. I try to remind myself that this too will pass. Someday.