Barley graduates - He did it! We did it!

These photos share a glimpse of the utter delight we experienced on the special occasion of Barley's graduation:

Sarah-Hope and her Barley

 

Libby and Sarah-Hope with Barley and the Honey's Garden trainers

 

The girls with Barley and his foster parents, Dean and Sharna

 

And.. the service dog certificate!

In order for Barley to graduate, he had to pass an assessment. This included performing the main tasks he does for Sarah-Hope in three different locations (home, school and at the local shopping centre). It also required him to passing his public access test, which includes assessing that:

- the dog enters, rides and exits any transportation in a safe and controlled manner

- the dog can calmly and confidently enter, ride and exit an elevator

- the dog does not bump shelves or interfere with any merchandise

- the dog can leave dropped food items on the floor when passing

- the dog can maintain calmness among the many distractions in the shopping centre 

- the handler can position the dog as to not disrupt the flow of business when sitting at a table

- the dog can go calmly and confidently into a public restroom and not cause a disturbance

- the dog can maintain appropriate service dog behaviour in the presence of children playing or other dogs

These are just some of what the dog needs to be able to do... it takes hours of exposing the dog to public settings and training him to restrain himself to stay and obey his handler so that they can respond to their person's needs instead. 

Barley was an absolute star and smashed his test! Will this mean that Barley will perform perfectly for Sarah-Hope from now on? 

No:) It is up to us to keep up the level of obedience, task training and public access exposure. Barley isn't a robot and we'll likely need help to integrate Barley into a new school or setting one day. We've got to keep up the good rhythms and habits that we've established... so it is true to say that we did it! And that we'll need to keep doing it!

How much this guy has grown since he was a pup (pic below from trainers as we didn't know him back then!) - what a beautiful dog he has grown into in three years!

Huge thank you to Honey's Garden for their support on the journey; Barley's foster family who just loved and believed in him so; those who generously helped to sponsor Barley's training costs; family, friends and neighbours who have had to patiently adjust with us to having a furry member of the family; church and school friends who've either been so brave embracing Barley as a regular presence, or restrained in accepting they can't enjoy him as any pet - this has been a full community project and we're so grateful!

Q&A: What’s the story with Sarah-Hope and Barley, her service dog?

What’s the story with Sarah-Hope and Barley, her service dog?

Sarah-Hope has a condition where she was born without any arm bones, knee caps or cruciate ligaments. She does have little hands, walks on her knees, and has naturally adapted to be incredibly functional despite her physical disabilities. However, as she gets older, movement is increasingly taxing on the body. Barley performing tasks for her gives her some independence as she matures.

Honey's Garden for Medical Alert Dogs is training a beautiful golden labrador, called Barley, as a multipurpose service dog for Sarah-Hope. The tasks that Barley helps Sarah-Hope with are:

·      To retrieve and carry objects for her

·      Pick something up off the floor for her (as in the picture above)

·      Open doors

·      Brace (stand still and strong), so she can lean against him when trying to stand

·      Comfort

Will he bite me? Does he bark?

Barley will not bite. He is a very gentle dog. He may bark if he is scared or uncertain, as this is his instinct. However, he is always corrected when he barks as protection is not part of the work he is trained to do for Sarah-Hope. We help Barley be introduced to new people by giving him high value treats which create a positive association and make sure that we approach them rather than them approaching Barley as that can be seen as intimidating.  

How is his training going? What are we busy working on at the moment?

It’s going well. Since Barley moved in to stay with us in July 2022, he has really settled down beautifully. 

When he graduates, Barley should be able to perform his tasks reliably for Sarah-Hope at home and in public. Dogs don’t generalise automatically, so as there are various life changes, we’ll likely have to train him for new contexts. 

As a family, we’ve been working on developing the habits and routines that will set Barley up to succeed. Barley should be with Sarah-Hope as much as possible in terms of their bond. He is also doing tasks that we would usually do for her… so we have to stop that in order for Barley to do them!

Can I touch him?

No. When Barley’s working jacket is on, he is only allowed to be touched by Sarah-Hope and the other family member helping her. 

Can I feed him?

No. Only Sarah-Hope or the family member helping her can feed Barley. If food is on the floor or ground, he is required to leave it. 

Is Barley working when he is just lying down?

Yes. Between performing tasks for Sarah-Hope, Barley will be required to stay in his place until he is released. It is hard work for a dog to stay “ready and on duty”, especially with interesting activity taking place around them. 

How is a service dog different from a pet?

A service dog is a working animal. For any working animal, such as a search & rescue / police / conservation dog, you can expect that 80% of the time they are in training in order for them to perform the other 20% of the time. There are much higher expectations of obedience and a Silver Canine Good Citizen award for obedience has to be obtained in order to become a service dog. The bond with the person they work for is essential so they are the only person that feeds them, and they also connect and play. 

Barley is given ‘free time’ to just enjoy being a dog, but the same level of obedience is expected.

What if the dog needs to go to the toilet?

Barley will go to the toilet before going into public with Sarah-Hope. He may also be taken for a toilet break if out for a long period of time. Barley does not go to the toilet with his working jacket on. The family member helping Sarah-Hope with Barley will take him to the toilet. Libby is the main handler of the dog at school. 

You can find out more about service dogs and the amazing pioneering work that Honey’s Garden for Medical Alert Dogs does on https://medicalalertdogs.co.za/

Grade 4 - increased energy and independence needed for the intermediate phase of school

Sarah-Hope transitioned from a government to an independent school during the pandemic so our focus for the last couple of years has been adjusting to a different curriculum and learning methodology rather than physical adaptations. 

A child with physical challenges can be expending up to double the energy that typical children do in a school environment just to participate in the programme. This along with the transition to increased independence that all children make in the intermediate phase of school meant that we needed to look at ways to increase physical support for Sarah-Hope. 

 

The air that one breathes

Sarah-Hope was visibly experiencing breathlessness and fatigue. The extra isolation / protection that the pandemic provided meant that we had a gap to make some significant changes in her diet and physical therapy regimes without these being interrupted by illness. However, by October 2021 when the Covid regulations began to relax after the third wave, she got a lung infection followed by another that December. Her paediatrician recommended that we have a follow up scope with a paediatric pulmonologist to relook at her anatomy in more detail.

The brochoscopy and larynscopy confirmed Sarah-Hope’s narrow airways and unusual lung anatomy which made sense of her breathlessness. The existing lung damage in one lower lung was of concern - the damage is irreversible and the compressed lower lung is very susceptible to infection. 

Sarah-Hope also had a check up with her cardiologist - in 2018, he was concerned that the clip that was used to repair her congenital heart defect might be obscuring the entrance to her one lung but since she has grown that is no longer a concern. Although her breathlessness was certain, her heart wasn’t under strain which was a relief. 

 

The main outcome of the investigation was that the doctor motivated for a special nebuliser for Sarah-Hope (PARITurboBOY) used by children with cystic fibrosis:

 

Sarah-Hope nebulises every morning with a few ml of saline. It also has a vibropep attachment - as she breathes in the saline, she breathes out through the vibropep and experiences a vibration through her lungs. This daily treatment improves her lung capacity and increases her energy substantially. She is more mentally alert and able to increase physical participation which is amazing!

 

Embracing physical adaptions 

When Sarah-Hope was a toddler, an OT explained to me that it would become increasingly important over time to provide her with adapted equipment. Sarah-Hope is constantly adapting to her environment so in certain places it will provide immense relief to have equipment that works for her body where the burden isn’t on her to adapt.

When she was younger, I didn’t take this approach. Every solution seemed too difficult to come by. Having certain stipulations about what spoon she should use for optimal functioning, for example, meant that we couldn’t just slot in and be with people where they were when we actually had the capacity to be in community. And managing the difference between the OT / expert’s advice on what adaption should look like and Sarah-Hope’s own problem solving was exhausting. Furthermore, spending money on all sorts of ideas that you don’t know will provide genuine relief was unsustainable. 

 

The introduction of adaptive aids is also a difficult emotional process. For every one, Sarah-Hope would need to come to the point of:

a.              Realising that doing what everyone else does is not optimal for her

b.              Accept / grieve that she was going to need something different

c.              Adopt the aid / device and embrace what it accomplishes for her

d.              Integrate it into our lifestyle

 

As she’s gotten older, Sarah-Hope’s knowledge of her body and her environment has improved dramatically. She’s so up for participating in what is going on that you usually don’t hear her mention comfort. But as adaption becomes increasingly taxing on her body, the relief that supported seating and writing aids provide makes a substantial difference to her endurance. And she actually acknowledges this and can articulate it. The physical strain can be physically detected in her body from the neck down. 

 

The challenge of writing without arms

Without arms, handwriting is incredibly taxing on the body. The constant rotating of the trunk from side to side, along with having to move from the top to the bottom of the page makes writing in any book hard work. A piece of paper is easier to move along and up and down to where the writing hand is although you ideally need the other arm to stabilise the paper. 

Because of the lack of arm length, Sarah-Hope’s head is very close to the page and she isn’t able to have a whole page perspective when she looks at her work. A slanted desk would be better in terms of her having her view of her page - but then the top of the page is even further away from her hand. Using prestik or a clip to secure the page would mean it isn’t easy to shift the page around to another position. 

 

Having said all this, Sarah-Hope’s handwriting is beautiful and if you saw it you would never actually guess that it was hers. The school she is at has a big focus on writing and I wanted her to get the benefits from this while it was still physically viable for her. 

 

Sarah-Hope had already started experimenting with typing on her iPad in Grade 3 and her teacher remarked that she was able to keep up with her class this way. This reduces the anxiety of falling behind and helps her to keep her attention on her work. 

 

Ergonomic set up in the classroom 

The advice we got from Sarah-Hope’s OT and physio was to:

• Start with her seating. The right seating solution is the foundation to the set up
• Then work out the positioning of the iPad / keyboard etc so that she can be supported to concentrate for an extended time

We had a height adjustable chair provided by the amazing team at ShonaQuip. 

 

The lateral supports Sarah-Hope’s trunk. One doesn’t realise how much children with arms use them for postural support - Sarah-Hope is always working really hard to hold herself up.

 

Onto the chair, a stabilo cushion was placed. This support for her trunk muscles allows for better breathing which is the foundation of being able to participate.

 

In the end we decided that using the iPad as a screen and typing with a synced keyboard positioned close to her hand (using a music stand) would allow the best positioning. 

 

Other physical support

Sarah-Hope aims to wear her full leg orthotics at school for an hour most days of the week. This sustained stretch helps not only the muscles but the joints and skin too. 

 

She has started using the wheelchair at school during break times and has absolutely loved the opportunity to gain greater access to the playground and enjoy movement. When her wheelchair isn’t available she uses her ride-on device, Zain.

 

Sarah-Hope's sister and friends in class assist with her set up - I'm hugely grateful to them for their care and support, as is Sarah-Hope.

 

Celebrating ten years of life!

 Friends, join me in celebrating a decade of this phenomenal child's life!

Ten years ago, I was bracing myself for Sarah-Hope's birth with not much more than a memorial service planned in preparation. She was in such a bad condition in the womb, there was no reasonable expectation that she would survive. 

 

But against all odds she did, and what an amazing young girl she has grown into! She has incredible determination, engages deeply and is such fun! 

I can't adequately describe how grateful I am for Richard and Libby on this journey. Richard has led me in embracing and celebrating... and stretched my capacity to navigate complexity. Libby is a well of life, pure joy to the soul, a genuine friend and delight. Our family life as the four of us has only developed more recently (prior to that we were graciously held together by extended family, friends and community as we lurched from crisis to crisis), yet I'm so grateful it has and look forward to how the story unfolds.

What a provocation Sarah-Hope's life has been - for me; scientific, educational and faith communities; neighbours, family and friends. May she continue to point us to the One who gave her life against all odds and who will surely continue to provide for and sustain her.
 

 

We've applied for a service dog!

Sarah-Hope has been through various animal stages. First she wanted a horse. I made it quite clear that that would not be in the realm of possible. I think she thought that asking for a bunny next would be a safe bet as a couple of neighbours in our complex have them. But I didn't budge on that either. She was then getting very interested in dogs and I did feel that a service dog could be a really special companion for her one day. You would typically only get a service dog when you're 18 and can handle it independently. However, Honey's Garden for Medic Alert Dogs opened up a new possibility - because the person needing a medic alert dog (for seizure response) could be a child, they use a model where another parent / family member can be the main handler. 

Sarah-Hope has applied for a multipurpose service dog. This means that the dog would be trained to accomplish specific tasks for her. In her case, it would be largely to assist with carrying and fetching given that she doesn't have arms. 

I called up Lucy Breytenbacht, owner of Honey's Garden, and she agreed to meet us in a park with the dogs that were being raised at the time.

We took a while to get our application in to Honey's Garden, so Sarah-Hope started getting herself ready by training her stuffed dog, Charlie.

After a successful interview, Sarah-Hope has been matched with a beautiful golden labrador, Barley. We are attending weekly training sessions and our first weekend visit is coming up this month. All things going well, Barley could graduate and come to live with us in around the middle of 2022. It is a blessing that we can slowly adjust to having a dog as part of our lives - there will be plenty of updates to come!

The comforting company of cousins

So many have shared with me about the gift of extended family. I live in the same city as my sister and both of our first born children have special needs. While many assumed this would mean that we would be even more of a support to each other, the truth is that we were in such crisis for so many years that we had very little capacity to offer each other anything. When we have the privilege of being away together, the multiple special needs diets, mobility needs and behavioural challenges that we're trying to balance on top of the normal demands of young children adds additional strain. 

But that has recently changed. Our girls are now all a bit older, and they can play together in the most beautiful ways.... they have formed their own little gang.

Sarah-Hope's superb sibling

Even if I had heard it before, it's never quite the same as experiencing it - it is not easy being a sibling of a child with additional needs. But today Libby blew my mind.

It was her idea... she decided we should have a special "Sarah-Hope Day". Just because. She would hand make gifts and cards for her. We would bake something she loves. We would make a sign declaring the occasion. We would do things that Sarah-Hope liked. Just because. 

Libby didn't do it with the hope that we would then 'get the hint' and do one for her. She never mentioned that then or to this day. She just decided to celebrate her sister.

 

I've been much more intentional over the last five years to ensure that Libby gets some separate time with me, Rich, her grannies or special friends. These are times when she can enjoy a greater range of possibilities than exist in our home - sometimes more active play or some dedicated individual attention or a different social connection. I've seen her sense of self develop which has been a gift.

But as the empathetic and compassionate person that she is, she really does delight in being with her sister. She'll make anything fun... like taking over Sarah-Hope's walker (it really isn't for you, Libby!)...

Partake in hypnotherapy...

Nap with her sister...

Play for hours in various imaginary games. I had to laugh recently when the girls were playing 'paralympics'. Libby is usually very accommodating playing dolls and dogs with Sarah-Hope... but in this game she insisted that she was blind, with a guidedog, and Sarah-Hope was her helper that ran with her in order to win a medal! I don't think Sarah-Hope quite knew what to do not getting to be the 'disabled' one but she knew her place in the game that day!