Bo & Isla – 8 months on

By Gareth Stythe

We’ve had Bo in our family for eight months now and we are about to leave him behind for two weeks as we go off on holiday. It seems like a good time to reflect on the changes we have seen and differences he has made to our family, to Isla and to us as parents.

(Although you can take service dogs on planes and they are generally accepted in other parts of the world, the extra vaccinations and examinations required make it a difficult exercise for a short time away). 

It is great to have a dog as part of our family. Bo and Mickey (our other furry companion) really are faithful friends, always ready to welcome you at the door when you come home. Bo is no different from other dogs in this respect. He is always keen for a walk and loves nudging you out of bed in the morning to get his breakfast (much better than an alarm clock). Since we’ve had Bo, I have enjoyed getting out regularly to walk him around the neighbourhood. We have a beautiful park on our doorstep and it’s great to have a reason to get amongst it on a regular basis in the fresh air. 

Bo brings all this but he is also a professional and has a job to do. It is amazing how he slips effortlessly between the two roles, from a family dog to a professional helper, when his working jacket goes on. He immediately slows down and looks for instruction, waiting when he’s told, alternating between encouraging Isla along and preventing her from running off. He has endless patience to get the job done and nothing seems like too much trouble for him. He has definitely taught me a thing or two with this aspect of his character. He provides security and a sense of safety for Isla when she is out in public. I took Isla to the doctor the other day when she needed an injection. Rather sensibly, Isla has a fear of needles and injections but unlike neuro-typical kids her age it is hard for her to rationalize this fear and overcome it. Her teacher had done an amazing amount of preparation in forewarning Isla about the injection, but as with a lot of things in life it’s the final few percent that count. Bo provided the final few percent when I took her to the Doctor’s that day. He was a calming influence and a great pillow for her to rest on, somehow Isla knows she is safe when he is around.

As well as looking out for Isla in public one of his main roles is to sleep on her bed and provide comfort to her in the night. Austistic kids can wake early or when they wake, want to get up and get going. This would be fine if everyone else in the house could catch up on sleep during the day. Since we have had Bo there have been countless times that I have heard Isla stir but because Bo is in her room she can comfort herself and get herself back to sleep. I can count on the fingers of one hand the amount of times that we have had to get out of bed to help her settle back to sleep in the night. Before Bo we were up in the night more than sleeping through it and when we weren’t up we would have one ear out for Isla. We even went through a period of Isla sleeping on a mattress by our bed because it was quicker to settle her that way than having her in her own room. Needless to say the increased sleep we are all getting has helped immensely for us to live more normally.

There have been benefits for me and Sara too. We both feel like we are achieving more in our daily lives. With not being so sleep deprived we exercise more regularly, have less alcohol, can parent better and are able to plan our lives together more.   In the eight months since Bo has arrived there have been huge changes in our family for the better. We generally have more energy and awareness and can draw on our reserves to face the challenges that life brings. It could be easy to say that we could have made some of these changes without Bo. Except we didn’t and the catalyst for making a few tweaks to our lives has definitely been the introduction of Bo.

So we are all going to miss you when we go on our holidays shortly but we are all looking forward to living more fully with you when we get back refreshed and ready for the challenges of the rest of the year.

Chronic Sorrow

There is an emotion that lives inside me now that I can’t really describe. Is a mix of heartache, anxiety, helplessness and feeling overwhelmed.   

I feel sometimes I live a double life. One with my older girls and friends being myself and another in this adaptive world we have created for Isla. Even when away from autism I still feel like I live it. There is no escape and I have changed. 

I talk, I try to educate to try and give  an insight into how I am feeling. People are interested and engaged but they don’t truly understand and they can’t. A bit like describing a country you have visited but without having the experience you can only imagine what it is like.

Everyone has their own struggles. A lot of kids have learning and social problems. Others have health issues and live in pain. Some are starving in the world and have no parents.  

I feel guilt for even feeling this way sometimes as I am grateful for Isla. I am grateful she can walk and talk. I am grateful that she is healthy. I am grateful she is loved. But the feeling still doesnt go away. 

It’s not the day to day. Isla is delightful, amusing, loving and gorgeous but it’s like living in a parallel universe.  

We live very much in a bubble with Isla being in a satellite class at school and attending activities for kids with additional needs. When she was in mainstream there was a daily reminder of her differences. They say they gap gets wider and it most definitely does. You see all the children growing up while yours stays very much like a toddler in some ways. I think that is also why those trigger events hit me harder as Isla’s world has very much become the new normal.   

I am not writing this for sympathy or even to get others to understand but to highlight to other parents going through this that having this emotion is normal.  There is actually a term for it its called “Chronic Sorrow”.

It’s the smallest things that can highlight “what is” versus “what should have been” and brings out all sorts of emotions…. anger, sadness and grief.  Caregivers with family members with ongoing illnesses or couples experiencing infertility can often have the same feelings.

It can strike at any time and it can be from the smallest trigger. It can be the usual things like when you see other children of a similar age performing at their first dance concert, playing their first game of netball or soccer or having regular sleep overs with their friends.  Or it can happen when your child struggles to tell you what they did at school, get dressed on their own or you see them struggling to relate to a peer of the same age. 

This term “chronic sorrow” was first introduced in the early 1960s by a counsellor (Olshansky) of parents of handicapped children. He observed that parents may suffer from chronic sorrow throughout their lives as a reaction to both the loss of the expectations they had for the perfect child and the day-by-day reminders of dependency. 

Sometimes called a “living loss” because it doesn’t go away, chronic sorrow may stay in the background while the family does their best to incorporate the child’s care into their usual routine. If a medical crisis or event occurs which magnifies the loss and disparity between reality and the life once dreamed of, it can trigger a return of the profound sadness.  

My particular response to feeling this way, after a seizure for example, is to get proactive and try and seek more answers for the helplessness I feel. This often leads to frustration as am confronted with the lack of solutions and services our public system can provide us.

I know Isla is way behind academically but in our world we celebrate the small milestones and successes. However when I am put in a situation when I am faced with how far behind she is, this leads me to research possible education paths and testing. However this brings back the realisation we cannot rush her development or cure her and there is a fine line between helping her learn and putting her off altogether. And so the cycle continues. 

I feel fortunate that Isla has older siblings where I have been able to experience what “normal” feels like but I’m not sure whether that makes me all more aware of the differences.   

Support groups help both on Facebook and talking to other parents in the special needs world as many of us feel the same. Family friends where you can all be yourself with no judgement is so important and I cherish my friends who provide this for us. 

I believe along with this “chronic sorrow” comes the opposite emotion of intense joy. I have definitely changed as a person with greater personal strength, wisdom and confidence. 

I have learnt to advocate the best care and services for Isla and have found a part of me that I never knew existed. 

http://www.medscape.com/viewarticle/707848_2
http://www.chronicsorrow.org/?page_id=11

Isla’s Special Carer Friends 

Isla’s life at home revolves around the iPad, computer and toys. In the morning she starts off on the iPad upon waking and after breakfast moves to playing with her trains which are a permanent fixture in our lounge. She will need to play with her toys before leaving for school even if it is for a minute before leaving as this is her morning routine and I have learned it’s far easier to give her a minute than trying to say we don’t have time.

When she gets home it’s the same thing watching Stampy or a video of trains. Without me actively interrupting and getting her to move on she will stay put all afternoon. She struggles to expand outside her fixed interests on her own even with prompting and loses interest quickly. 

I would love to have the time and inclination to sit and play games with her. There are only so many times you can play Disney Monopoly without losing your mind!! There is also still dinner to prepare, washing to fold and other children to taxi around. Her sisters, as wonderful as they are, are teenagers now busy with their own lives and activities and homework and don’t have the time or inclination for play much these days. 

Isla attends art therapy on a Monday and Special Olympics Swimming on a Sunday which she absolutely loves but that leaves many afternoons and weekends where Isla’s free time isn’t spent as I would like it to be. She has a special relationship with her Nana and has many fun times with her but was getting difficult to only have one person to rely upon who knows Isla so well.  

A couple of years ago we qualified for funding to employ a carer for exactly this reason. At this point (pre Bo) I was so sleep deprived and had no energy to do anything with Isla. The guilt sets in and gnaws away that you should be doing more. More learning opportunities need to be had, steps need to be taken to stop isla turning inward and be part of the world and other people in it. I always wonder if Isla had been born many years ago before this virtual age of iPads and Minecraft what she would be doing with her time. I justify her screen use by rationalising she’s had a busy day at school and can have down time but that feeling I should be investing more time to make up for her delays and deficits is always there.

We hired lovely Zali for 5 hours per week. Just to come over and play with Isla. Having some experience with autism she didn’t get offended when Isla would spend the whole time asking “are you going now?” over and over. Isla works well with a visual schedule so we used this to incorporate play, learning and timed iPad breaks into the hours she was here. It took a few months but Isla started asking when Zali was coming and would wait eagerly for her to arrive. They played many many games of Disney Monopoly, playdoh for hours, Zali was allowed to sit on the mat with the trains when no one else was at that time, they played outside, got messy with paint and went on train trips. 

After a year with us Zali left for Melbourne for University but we found a great replacement for her, Olivia, who was already familiar with Isla with our families being friends, and the transition was much easier than I thought it would be. She now has another friend who she loves that comes to play with her and Isla looks forward to her coming each week. There is nothing better than hearing Isla read with Olivia and coming home to seeing them jumping on the trampoline together and playing with Bo. 

” Over the last few months I have spent with Isla, I have learnt so much from her, and I hope she has also learnt from me” Olivia says. “I have come to understand and love her little quirks, and I think working with Isla has really shown me a different perspective of how she sees the world. One of the things I especially enjoy is reading with her and hearing how she is improving. Seeing how she explores outside her comfort zone, like when she began to walk to her class by herself, makes me so happy and proud of her. I love my job working with Isla, and it is definitely making me grow as a person, and is hopefully helping her personal growth as well”.

I am extremely grateful to have found such wonderful young ladies who are so patient, tolerant and I can see totally get and enjoy Isla. This has been the best thing I have put in place for myself and for Isla. Am sure it has helped her social skills, learning and ability to transition between activities. 

Hopefully Isla has taught them a thing or two as well and hopefully has enriched their lives as much as they have hers. 

A sister’s point of view by Imogen

I am Isla’s oldest sister, Imogen. I am writing this to give my perspective on having Isla as a sister. I hope I can show you how having Isla as a sister has changed my life for the better. 

When I was 7 years old I was told I was going to have a new brother or sister join our family. I still remember the day I first meet Isla at the hospital and holding her for the first time. I thought to myself how cool it was that I was a big sister to not only one younger sister but now two. The first few years with Isla were normal. I remember her learning to crawl and walk just like any other normal baby would do. I was so amazed by this new baby sister I had and I absolutely adored her. When I was around 10 years old I wrote a speech for my class on Isla and just spent 3 minutes talking about what she looked like and the cute baby things she did.

As Isla became older and as my family started to go through the long process of figuring out that she had 2Q23.1 micro-deletion syndrome, the difficult road for my mum and dad was just beginning but also for Carys and I as we started to adjust to this new life we now have. 

Although having Isla as a sister is the most special thing to happen in my life it does feel like sometimes Isla is the favourite. Although she is different to most kids her age to me she seems normal because I have grown up with her and can’t imagine her any other way. She gets away with a lot more than Carys and I would and when we don’t feel like doing something, we often play the ‘Isla doesn’t have to do anything’ card. 

It’s hard to understand that she probably will never do the same things as Carys and I do at our age such as chores and going to hang out with friends. 

It’s also hard for me to watch other people’s parents be able to come to everything such as sports games and for them to have more optional freedom and time. Both my mum and dad support me 100% and I know that and have known that my whole life but with Isla it often makes it hard for them to just go away for a weekend even now that both Carys and I are older. 

This brings me to my next point and how we are so grateful to have Bo in our lives. He has made us more confident to leave the house with Isla knowing that she isn’t going to run away or if she has a meltdown in public people won’t give us the death stare and think Isla is a spoilt little kid. My parents are now more available to come to my rowing regattas and watch me do what I enjoy as a sport. Finding someone to look after Isla while Mum and Dad both came down to Karapiro to watch me race was something that didn’t happen that often. Now even Isla can come watch me race which is so awesome. 

I don’t think our family would be the same if we didn’t have Isla in our lives. She has helped me open my eyes to a whole world of diversity I didn’t even knew existed if it wasn’t for her. I mentioned earlier that I was so amazed by my new baby sister I had and how much I adored her and if I am being completely honest I am even more amazed with her today. The way she can whiz around a computer, her unconditionally love for her friends and family, how she puts a smile on anyone’s face by the crazy things that come out of her mouth and what I love most about her is how she has a open heart and will love anything that moves even if she doesn’t always show it. I love my little sister very much and I hope this was helpful in giving you an insight to my thoughts about Isla being my sister. 

Imogen (15)

A weekend reflection

Being out of routine in new environments is a good chance to reflect on where we are at. 

Isla actually loves going away. I think because we have always taken trips away from when Isla was born. In fact her first holiday was when she was a couple of weeks old ! Also there are certain things that we have learnt that have made the transition easier.

I liken it to having a baby or a toddler. You know you are going to have to take their favourite cuddly, their favourite toys and things that help keep them entertained along the way. Also you would pack their wipes, nappies, milk bottles, snacks, favourite drink bottle as essential items. We are still at this stage with Isla even with her being nearly 8. 

Also like a toddler who may have a tantrum if they get their breakfast served in the wrong bowl type of scenario, you choose your battles. Knowing Isla like we do it is pretty easy as long as we keep things as she expects. Certain items in the lunchbox (or the 2 lunchboxes she has), a favourite drink bottle with it filled to the top with water, her blanket, pillow, a soft toy and iPad. Add a few cartons of hot chips with sauce, a chocolate trumpet and a visit to a playground or two along the way and we are set!

This time we also had another member of our family to think about and all of his requirements. 

There were a few standout moments for me on this short break away of how far Isla has come but also the struggles we will all continue to face with her being a small child in a much bigger body. 

It is interesting now with Bo in tow how we are perceived. Walking into a restaurant in Hamilton we were met with kind looks and smiles. WIth Waikato being the home of Assistance Dogs there seemed to be a lot more awarenes however we have had the same response everywhere we have been in Auckland as well. 

Having Bo there with Isla makes us feel like we don’t have to explain ourselves. A scream from Isla in a busy restaurant turned heads, people saw Bo and their faces soften. A request for 3 different types of water. “Sorry no ice”, “sorry a shorter glass”, “sorry a shorter straw” doesn’t seem to be so hard to ask for with Bo by Isla’s side. Isla lying all over the seats with feet everywhere when we are out having a meal as she tries to cope with the people and noise doesn’t make us look like bad parents who can’t get our child to sit up nicely at the table.

Being away and out in public a lot of the time meant Bo was working a lot more. When Bo is off duty he is quite a different dog. He is very social and playful. The transformation when he is working with his jacket on is quite amazing. Although it doesn’t look like he’s doing much lying there by Isla, it is hard work for him I’m sure not to go and see everyone and take them his toys. 

He was pretty perfect the whole time. He toileted on cue, was calm and tolerant and a good friend to Isla. It was so nice to have her tethered to him at the water’s edge at the lake which allowed me to relax a lot more than previous years.

Playgrounds have always been a favourite activity for Isla. However I have discovered I am finding it particularly hard now Isla is getting older. She doesn’t have the social skills to play with the kids her age. I just want to go and whisk her away.

Children sometimes can’t see what an adult might and empathise.  I see kids joining Isla and then realise she is a bit different and then leave or I see that look they give her when isla will start stimming or will let out a big burp and they don’t really know how to handle it. 

It breaks my heart especially as she is becoming a little aware of others and trying to fit in. She really wants to play but she cannot pick up what’s appropriate and I really cringe watching her to be totally honest.

I want the children to see and accept her for who she is but a lot of them really don’t know how and to be honest aren’t all that interested understandably and I don’t know how to bridge that gap especially on a chance forced encounter in a playground. 

As we have immersed ourselves in the special needs world the contrast catches me off guard every time. Luckily for her however she is just frustrated that others won’t do what she wishes and rejection isn’t really a concept she would understand at this time. She is also more than happy to take her paw patrol toys along and play with them in an empty playground.

We are now looking forward to our Christmas break with all of our family together!

Thank you to everybody who reads my blogs as I try and educate about autism and make the world a more understanding place for Isla.

It’s been a great year and our girls are growing up and we are proud of all of them.

Merry Christmas and Happy New Year x 

A month on


Bo joined our family a month ago. Those with assistance dogs told me our lives would change but I must admit I was quietly sceptical. However now as these changes have become the norm, I have to keep reminding myself how things are so much better and easier “after Bo” and he really has made a difference in our lives.

Once upon a time the way we would make Isla keep up a good pace would be to hold her hands and give her a good swing to propel her along while saying  “1, 2, 3 weeeee”. Being 7 and a lot heavier than she was at 3 this was no easy feat. Walking anywhere was painfully slow and frustrating. She doesn’t really like her hand held for a long time so was hard to keep her on course without touching, exploring and even licking obstacles in her way. It got to the point we have stopped taking isla out for walks as isn’t really enjoyable.

Walking now is completely different. Tethered to Bo, Isla has the freedom to still touch or at least try to but she keeps a steady pace.  She likes to feel the different textures of the fences as we walk up the hill from school and names them woody, smooth, bumpy. This helps me keep her on track as well as me directing her back to hold the handle on Bo’s harness. If she gets distracted by a keypad on an electronic gate for example, I just use Bo to give her a gentle pull along by a tasty treat in front of him. She also likes me to shorten the lead which attaches to her belt on the big hill when she is finding it challenging. 

Her sensory system seems to be calmed and organised through him and her mind seems clearer. This is the only way I can describe it. She can talk, sing and communicate easier. She is calm and she is safe and no one is grabbing her every minute. It is similar to how she is in water. We have the best talks in the spa as the water has the same effect.
Isla doesn’t run like she did up until a year or so ago however she is unpredictable. Before Bo, a ball being kicked out of school as we were approaching resulted in a quick dash after it. If I wasn’t there to quickly grab and scream at her she would have run straight onto the road. Also her fear of the diggers excavating our driveway recently had the same effect…just to run without thinking. 

Isla is already approaching the roads when Bo stops to sit and says look out for cars. I think she likes to say it more than she means it but is still a starting point of being road safe. It will be a while until she can safely cross a road on her own but we are laying down the foundations now and through a lot of repetition which is how she learns hopefully she will learn that skill. She also likes to tell Bo to “leave it” as we pass barking dogs and tells him he’s good boy for leaving it. 

Isla’s motor planning is poor. The world can appear chaotic with no clear boundaries, order or meaning. With having Bo by her side we are training her to have a plan when she goes somewhere to a shop for example. Julie at ADNZ taught us to walk around the outside of a shop when entering so she can find her way out. I feel there is now hope for her future to be able to navigate her way on her own with a little help from her dog. 

What a relief it is to wake up having a full nights sleep! Isla gets a book read before bed and likes to settle herself now with Bo on the end of her bed. Around 5.30am when she hears the birds chirping Isla and Bo make their way downstairs and she lets him outside. No night time calling out, no 4.30am wakings and a much happy Isla and mummy & daddy!  There have even been a couple of 6am and 7am lie ins too which is promising.  

For the first 2 weeks I was waiting for the novelty to wear off. For Isla to have a tantrum about not wanting to walk, sit at the table, go to bed, not getting what she wants as this is the norm. It did happen at around week 3 but we worked our way around it. I have found with not being so tired myself I am able to follow through and handle her behaviour better. When she didn’t want to walk home we just sat and waited until she was ready. She is still sitting beautifully at the table to eat and delights in calling Bo to come to his bed for her meals.  She also plays a part in feeding him his food by blowing the whistle which means he can eat. 

I can see their bond growing as Isla becomes more and more trusting of him. She hugs and touches him and is learning how to do that gently and appropriately. He is very patient throughout all the prodding and exploring !  Isla is getting  better with him being in her space even on the mat where she plays with her toys which is definitely by invitation only!  Mostly at home though she still does her own predictable thing of computer, iPad or toys and only uses Bo when he has a role to play. It’s still an effort to get her outside, however when we do she has a purpose of throwing a toy or jumping on the trampoline with him.  She loves being tethered to him with her belt and is proud he is her special dog.  

I feel so grateful to have the opportunity of having one of these amazing dogs.  The reason it has been such a smooth transition for us is the extensive training, and upbringing of Bo before he arrived. 

There are many, many families on the waiting list and being a small non government funded organisation they are always looking for support. For ways you can help go to http://assistancedogstrust.org.nz/faqs/

Our Assistance Dog – a husband’s perspective 


Sara often updates the “Simply Isla” page with her thoughts about our journey with Isla and I thought it might be helpful to some Dads out there if I gave some insights from a bloke’s point of view. I thought I would describe my feelings when Sara said we should apply for an Assistance Dog, the fundraising that we did, the amazing people we have met and how are lives have already changed now that Bo is with us.

 I can remember sitting on the couch discussing Isla and the prospect of an assistance dog with Sara in January this year when our application had been accepted. My first thoughts were a) she doesn’t need one, she is okay and progresses along at her own pace and b) the cost; both financially and in terms of the added difficulty looking after the dog would bring, would be more than the benefit. However, I know that when Sara has set herself a goal, there is not much that can stop her and she felt it may be a real asset to Isla for her to gain independence as she got older and for us to regain some lost freedom as a family.

She described how people fundraise for the dog, not just for raising money for the charity but also for helping to raise awareness in the community about Isla, Autism and Assistance Dogs. She said it wouldn’t be too hard and that she would look after that side of things, one hurdle down. She also said that once a dog was with us the people at Assistance Dogs would help to train us and that once we were up to speed with the details another dog would become part of our routine. Sara was firm in her views and knew that an Assistance Dog would help both us and Isla. So we began planning our fundraising.

If anyone is like a “dog with a bone” (excuse the pun), when it comes to achieving a goal, it is Sara. She asked for help from the community and some wonderful girlfriends of hers came forward to form a little fundraising committee. After having a brain storming session there was a list of potential fundraisers and the plan was to do pretty much all of them one after the other culminating in a big “Back to School” disco.  

We thought that it would be good if we paid for any costs associated with the events so that all the money raised from people went directly to Assistance Dogs. So we covered the cost of sausages and sauce for the sausage sizzles, the hireage of the cinemas and the cost of the DJ for the disco etc.  

Thanks so much to all of those involved for your amazing help. I was taken aback by the community response. I was a little scared of putting ourselves out there and asking for help but was astonished by the generosity of spirit that there is in Glendowie. For example, in order to arrange the disco we had to find a place to hold it, get sponsorship from local businesses and sell heaps of tickets. The guys at the Churchill Club were great in referring us to the local bowling club and they in turn were so generous in letting us hire their wonderful lounge for free. 

The local businesses were generous in their sponsorship by donating food and prizes for the night. It was an amazing night not only because of the amount of people who came but the absolute abandon with which everyone threw themselves into the event. Everyone loved getting back to their roots and danced the night away to old school classics like Nirvana’s Smells Like Teen Spirit. I bet there weren’t too many without sore heads the following morning. 

I was amazed with everyone’s support and donations then and still am now, it is lovely to know that so many people care.

Throughout the journey we have been so well supported by the wonderful team at Assistance Dogs. Initially Susan helped us through the fundraising and introduced us to some wonderful Assistance Dogs in training. Then when Bo first came to our house, Tracy was wonderful in training and guiding us in how get the best from Bo and how to look after him. Julie, who set up and runs ADNZ also helped us in how to tether Isla to the dog and how to think about ways to let Isla work on her own and gain more independence from us and has been on call for any questions as they come up. 

We can be over protective of Isla because we have spent longer than usual in a pre-school type phase with her and it is difficult to let go sometimes.

Bo is truly amazing now that he is in our house. The three things that he has changed for us already are Isla’s walking, sleeping and eating. I walked Isla and Bo to school on Friday and it was such a difference to other times I have taken her. We passed three girls of about Isla age walking independently to school. Isla is a long way from being able to walk to school like someone of her own age and it reconfirmed to me that we definitely made the right decision. 

Before Bo she would be all over the place, frequent stopping, often wanting to go back and getting distracted, wanting to touch power poles and trees all along the way. On Friday, she walked directly to school in about 5 minutes while tethered to Bo. He seems to calm her and help her to focus on walking rather than all the other stimulus around her. I’m not sure how this works but it is wonderful to hear her asking questions about things while walking and singing little tunes instead of wandering off to touch and explore.

Bo sleeps on Isla’s bed and again calms her so that if she wakes in the night she no longer needs us because Bo is there. They are both early risers though and we are working on strategies to keep them both in bed until 6am.  

At dinner times Isla would frequently not eat her dinner or run round the table in between bites. We had resorting to feeding Isla while she played on the computer because that was the only way she would eat. We felt that this was not a good thing to do but it was the lesser of two evils. Better that she had some food rather than waking up hungry at 2am. Now Isla takes pride in getting Bo to lie on his bed while she eats a healthy dinner at the table. It is great for family bonding and our other girls that we have more family dinners together.

We recently took the whole family to the Churchill Club for dinner with Bo as well. This is the first time we have eaten at anywhere other than Mama Mia locally. Isla would normally have a tantrum if she went anywhere else because she loves her cheese pizza and chocolate ice cream. She sat still and mostly calm for the whole night. 

It was great to spend some time with friends and their families. Some of the guys who helped us with the hiring of the bowling club and organising the bar were at the Club and it was lovely for them to see Bo and for us to thank them in person for their help.

So my initial fears about the costs, in money and time, and whether she needs a dog have been proved wrong because the benefits already of having Bo in our lives are amazing. He is helping all of us to live better as a family and especially helping Isla in her unique behavioural challenges.

Isla & Bo. The first week.

It has been five days since Bo joined our family and it has gone better than I could ever have expected. He has settled in well and feels like we have had him for a much longer time.

Isla is sitting at the table for meals with him lying in his bed next to her. She calls for him to go there and this makes her sit without trying to get up and take her food to the computer, leave the table or stand up and fidget while eating.  


We talked about sleeping arrangements for a while before he arrived but I never thought she would allow him on her bed. She was never happy, when on the odd occasion, our small dog Mickey ventured on to her bed and she would scream to get him off. However Bo has slept happily at the end of her bed every night on his assigned Dora blanket!  Isla has not got up once and only has called out a couple of times when she’s been cold or didn’t know what time she could get up which is incredible. Our nighttime bedside visiting from Bo with a sock or empty toilet roll (plenty of those to be found in our house) is becoming less frequent as he realises this is where he is meant to sleep. They are both early risers and are both still up before 6am but go downstairs together without disturbing us. Am slightly missing my morning cuddle from Isla in bed but this new found independence is amazing for her and is exciting for her future.


She enjoys getting his food ready and blowing the whistle and is learning to put it back in its place rather than just dropping on the floor.  
Isla is still struggling to initiate play with Bo outside so think it will need to be built in to her afternoon routine and the rain hasn’t  helped as neither of them want to get their feet wet! She does enjoy throwing the ball though and telling him to drop and bouncing on the trampoline with him. She enjoyed playing hide and seek with him with the whistle and her treat stick (and her carer Zali) and even made up her own game of tag with him. She enjoys playing with him but is always a constant struggle to remove her from the computer or toys and so far this hasn’t changed this.  


We are still having a few tantrums with the tiredness of being back at school but Bo is taking it all in his stride and stays beside her throughout all the crying and screaming.  Even though she seems disinterested in him most of the time (apart from meal and bed times) she is constantly aware of his presence and doesn’t want him to leave her and go out with me.  
This week has been a big learning week for me in dog obedience and handling. Has been quite tiring but thoroughly enjoyable with Tracy from ADNZ. I feel so fortunate to have had this training with such an experienced dog trainer and all round lovely lady and I am feeling very supported. 

Next week the equally amazing Julie, the CEO of ADNZ will be helping us incorporate Isla with my training and handling of Bo. This is when Tracy being tethered will be replaced by a real live Isla and we will navigate our way out in public. I am hoping Isla will respond as brilliantly as she has with everything else in the house and this will help strengthen the bond Isla has with Bo. 

As well as keeping her safe she will be learning through repetition how to safely cross a road, go downstairs with care, walk calmly and consistently and I think having Bo there will just make everything a bit better and easier to handle when feeling overwhelmed. Will be interesting to see. 
Bo himself is an amazing loveable dog. When out walking he is compliant, calm and consistent. When at home he is playful, cheeky and cuddly. A perfect match for Isla and our family.  

All things Isla 


I have been struggling with a specific subject for a blog so thought I’d write a general update of where we are at in general with all things Isla.

From being  a non verbal toddler,  Isla certainly makes up for it some days when she has a great sleep and is chirpy and full of chatter. I love these chats with Isla where she will tell me “its raining mum and the rain makes our trees and flowers grow”.  She will ask me “mum when will my boobies grow?…maybe when I’m 8?” and tells me when I say “perhaps you should take your slippers off when you go outside “don’t worry mum my slippers can handle it”. Her BFF Sammy gave her some cute hair ties for a prezzie and Isla says “maybe next time you can bring me Shopkins”. Discussing what we are going to have for dinner on the way to school, she says “maybe not meat… I struggle with meat”. She says these things with such sincerity and her wee high pitched sing song voice brings a smile to my face every time.  

Isla is now back sleeping back in her own bed after a few months in our room when we all just needed a bit of uninterrupted sleep. So far so good although she will still yell out at least once per night and by the time I get to her room she is wide awake. The wind and rain haven’t helped matters with her waking terrified and covering her ears. We have had a couple of 4 something am mornings with her (and me) not able to get back to sleep. Am hoping the addition of a 4 legged friend sleeping on her bed will help give her the comfort to go straight back to sleep. Fingers crossed. She really is a different girl after a full night’s sleep and I cope a lot better too. 

Talking of a 4 legged friend we have been matched with a dog and is all very exciting. I am really hoping her new friend will help her deal with the outside world a bit better when she struggles and provide me a helper when I struggle with her.

Academically Isla is progressing. Her reading is definitely coming along and I have recently discovered that she knows pretty much every word on Minecraft. I’m not sure exactly how considering the word isn’t sounded out when you click on it. She must have watched a fair few Stampy videos! Her letter formation is also getting better. She can still only spell a few words…Sammy and Isla being the most popular but we will get there. Her teacher Adele is the most amazing lady. In her spare time she helps with Special Olympics and has just been approved as a respite caregiver for foster families. I am so grateful for her and she is responsible for most of Isla’s progress. 

Therapy wise Isla does art on a Monday. Loves this and is great for her to express herself and for her social skills. She generally likes to paint boxes. The emphasis isn’t necessarily what they create but how they share it. 

She has started one on one swimming lessons on a Tuesday which is hard for her but good for her brain and motor skills. It is so so challenging for her to do more than one thing at once and to make her arms go forward instead of back (freestyle versus backstroke) is almost impossible for her. Things I took for granted with her sisters  are so difficult for her to master.

Fridays we have dance therapy (same organisation as art) and she also enjoys this although we have had a few crying episodes last term. Think it might be a bit much after an exhausting week at school and a bit of sensory stimulation causes her to shut down. She still is keen to go each week so we will persevere.

Toys, the iPad and computer are still her favourite things. Paw Patrol seems to be a favourite at the moment with Shopkins a close second. She plays for hours with play doh with her carer Zali and enjoys playing board games with her. Then she spends the rest of the time saying “you go home now Zali?” and Zali has strict instructions to sit on the couch when she’s playing with her toys! 

The seizure monster visited us before the holidays unexpectedly but fortunately not again since. There was no trigger for the latest one and she seemed to recover quickly after a sleep. Is frustrating understanding why these still happen randomly but for some reason her brain just decides to shortwire. We are apparently on a waitlist for a 24 hour EEG but who knows when that will happen.

Isla’s “stims” or a new name I have discovered “complex motor stereotypies” are out in full force currently. Upon researching why she does it…the reason is no one knows!  It actually can affect non autistic children (termed “primary”) or autistic children (“secondary”).   Her noisy expression of excitement is still very much a part of who Isla is and we have learned to accept it. In class when it is a bit loud for the other children Isla uses a chew necklace which helps quieten her down a bit. Another thing she has developed is loud belching. With Isla you have the I’m concentrating hard, swallowing air, small burping which has been present for a while now. However this has now progressed to loud, man sized burps which will draw attention wherever we go.  I’m sure people can hardly believe that noise has come from a small girl like her and probably think it’s one of us!  There is nothing I can do to stop her doing it so what does one do?  You can’t do much I can tell you! 

However all in all things are pretty good at the moment. There are external things that frustrate me some days. Things I can’t control and wish would be different. However i will continue being an advocate for my daughter and educate people as I go. 

Thanks for reading x

Funding and support in Auckland for a child with a disability 

This post is aimed at those newly diagnosed in Auckland specifically. Rules can vary in different parts of NZ and also if your child has different disabilities.

There is a whole confusing range of support you can call upon that will not necessarily be pointed out to you upon diagnosis. 

EDUCATION

Early Intervention

Parents can refer directly to the service or you can be referred by your doctor or specialist.

Early Intervention services are mainly provided by the Ministry of Education Early Intervention teams, but there are a few other providers contracted by the Ministry to support families of children with disabilities, for example: CCS Disability Action have the contract for high need children where as the MOEs Group Special Education (GSE) have both the high and moderate needs contract in Auckland. This may be different in other parts of NZ. 

You can phone your regional Ministry office or other Early Intervention provider, fill in a referral form, or send a letter or email. Try to give as much information as possible about your concerns and what help you would like. Include any information, like observations and/or learning stories that describe what you have noticed and recognised, how you have responded and what’s been helpful.

For us, we had an EIT (Early Intervention Teacher) who basically coordinated help needed and a SLT (Speech Language Therapist) provided by GSE.  

We were referred to the Child Development Team (CDT) for OT and physio but didn’t provide us with further help other than assessment. We then got referred back to the OT before starting school and for her first few months at school to help with sensory and motor skill issues.

We had an Education Support Worker (ESW) that helped Isla attend kindy. When we applied we were lucky to get help for her as the rules were changing ! Funding cuts/restructuring. Also she had a psychologist for a short time to help with behavioural issues that they never replaced for the same reason.  

We also paid for private OT and speech therapy.

Through the SLT we attended the Hanen More than Words course which was really helpful. 

School 

When a child starts school the early intervention service abruptly stops.  

We had to transition Isla to school in December although she wasn’t starting until February as Isla’s ESW wasn’t funded the following year! 

If you decide to keep your child in daycare or kindy until 6 years old you may be able to retain EIT and OT support but may lose the SLT and ESW. 

The SLT may carry on when your child   starts school working with the teacher giving them teaching strategies rather than working directly with the child. 

We had access to the OT for a few months but this is not the norm. It was because the OT was provided a little to late to help with school transition.

If your child has high or very high needs and are at school they might get extra support from the Ministry’s Special Education team through a range of services such as:

* Resource Teacher: Learning and Behaviour (RTLB) * Ongoing Resourcing Scheme (ORS) * School High Health Needs Fund (SHHNF)

Further info can be found by clicking on the following link:

http://www.education.govt.nz/school/student-support/special-education/#PB4L 

An RTLB was assigned to Isla when starting school to help with strategies to help with behaviour and learning in the classroom and they applied for ORS funding when we realised mainstream wasn’t the best place for Isla.  We had actually also applied for ORS before starting school but got turned down. 

ORS funding gave us the option of keeping Isla in mainstream schooling which she found challenging, even with supports already in place, or to enroll her in Somerville School where she could attend the satellite class within the school she already attended.  We enrolled her in Sommerville School.  Her school provides the extra support she needs in terms of therapists, adapted curriculum and teacher aides.

If you were in the mainstream with ORS funding the assistance you would receive would still be determined by the MOE I believe. 

FINANCIAL SUPPORT 

There is a range of financial support that you can apply for. 

Child Disability Allowance

Child Disability Allowance is a fortnightly payment made to the main carer of a child or young person with a serious disability. It is paid in recognition of the extra care and attention needed for that child.  It is not means tested. 

This requires your child’s doctor or paediatrician to complete a form and is reassessed every few years depending on what they mark as the review period.

Needs Assessor Service Coordinator  NASC (Taikura Trust in Auckland) 

The first step to get the funding you require to provide additional support for your child is to meet with a Needs Assessor.  They may not provide much support for a child 2 years and under however as they dont believe their additional needs require much more effort than a typical developing baby/toddler.

Taikura Trust is the Auckland’s single facilitator of needs assessment and service coordination for support services, for people under 65 years who has a physical, intellectual, sensory impairment, or autism.

The needs assessor will meet with you and decide what supports they can put in place to help support the carer and child. 

Also they can make referrals for behavioural support.  

I attended a behaviour course at Timato Hou (subsidiary of IHC) and had a pyschologist work alongside us at home who Taikura referred us to. Unfortunately she couldn’t provide strategies for school where the behaviour was taking place as this is a different department.  

There is also a service called Explore who provide specialist behaviour support services for those eligible for disability support services and who present with challenging behaviour. The wait list for this is very long so a good idea to go on it early!

Examples of support Taikura can help you access:

Carer Support

Carer Support is a subsidy funded by the Ministry of Health to assist the unpaid, full-time carer of a disabled person to take a break from caring for that person.

This can be used to part pay for therapy  where the provider allows it. 

Home Based Support 

Household management 

Meal preparation, washing, drying or folding clothes, house-cleaning, vacuuming and tidying up.

Personal care 

Eating and drinking, getting dressed and undressed, getting up in the morning and getting ready for bed, showering and going to the toilet, getting around your home.

Respite Care

Respite is designed to provide short-term breaks for the carers of a disabled person, while also providing a positive, stimulating and worthwhile experience for the disabled person.

To facilitate this funding you have 2 options. 

Either going through a Service Provider such as Idea Services who will provide a carer at specified times for personal care and a respite facility to utilise that funding. 

Opting for Individualised Funding This gives you increased choice and control to choose who provides this support, and how and when you use it. You can employ your own care providers and manage all aspects of service delivery. Respite care can be provided in the home. 

For Isla we have personal care and respite hours through IF.  I found its important to work out what you are entitled to and what you actually need before meeting with your NASC.  For example I needed someone in the home to help with Isla while I was cooking dinner for example or running around our other children to their activities.  Respite gives us time out or let’s us do more family activities for our other girls.

I hope this helps someone trying to navigate their way through the system.