We are raising funds for Assistance Dogs NZ to train a service dog for our 8 year old Natalie, to help with her autism and epilepsy.
We are raising funds for Assistance Dogs New Zealand who will be training service dog Rufus for our daughter Natalie. Natalie is a happy, warm, and charming 8 year old with epilepsy, autistic behaviours, and a significant developmental delay.
Natalie was growing up like a neurotypical baby. She was hitting all her milestones and seeming to thrive until she developed epilepsy around age two. She has absence and myoclonic seizures that are small but frequent - sometimes as many as a dozen a day. She doesn’t lose consciousness or fall but those multiple seizures have had a major effect on Natalie’s development. Around the time the seizures started Natalie’s development stalled. Her behaviour and cognitive skills seemed stuck at a toddler’s level. Her attention span reduced to mere seconds until she couldn’t focus on any toy even long enough to play with it. She lost all language and was non-verbal for some time, and now has regained a little but is not back to the language skills she had at 2. Natalie’s epilepsy is refractory, meaning it can not be controlled well by medication.
As Natalie has aged she has developed autistic traits that intensify with every passing year. At first we noticed just one or two repetitive behaviours, but that grew until her day was filled with repetition and squealing or “vocal stimming”. She became adverse to certain touching such as brushing hair, teeth, and certain fabrics. She also become increasingly overstimulated by crowds and the sights and sounds when we were out in public. At the same time, her short attention span means she is both overstimulated but also bored! This is when she wanders and runs.
This has mystified specialists as the autistic traits started with the onset of epilepsy and there were no signs of autism in her baby or toddler years. We can only surmise that the seizures are having this serious side-effect on her brain.
Natalie is also unusual as she loves meeting people and is very affectionate and friendly in a one-on-one situation, but retreats and becomes anxious around more than a handful of people.
All of this has meant that taking Natalie out to public places has become harder as the years go by. She is constantly on the move and has no regard for her own safety. She’ll step straight in front of a car or into a pond. She is physically very fit and fast and can get away on us in a heartbeat. All the places that are fun for other children like the beach, parks, playgrounds, the zoo, and museums have become a stressful place for us to go to as a family. One person has to stay on their feet and constantly chase after Natalie and save her from harm. Even visiting friends and family is hard because if their doors aren’t deadlocked and their home isn’t fully fenced like ours Natalie will wander out into the neighbourhood when our back is turned.
Instead of the stress and fear of what might happen we choose to stay home or split the family and one parent will take our sons out. We wish Natalie could enjoy outings more and benefit from visiting the places that other families do. It would be wonderful to do simple things like have a picnic on the beach or a walk in a park.
The Ministry of Health helped us get a super-sized reinforced pushchair that could take the weight of an older child and when we have to go places we put Natalie in this with a tamper-proof seatbelt so she’s safe and secure. This has made some outings possible but not enjoyable. Natalie hates being in the pushchair (what 8 year old wouldn’t!) and it means she’s not getting exercise either. An assistance dog would lead Natalie when we’re out and about. The children wear a belt that is attached to their dog so although they feel they are walking the dog, the dog is really walking them. If Natalie tries to run the dog will be trained to lie down and anchor her. It is thought that children with assistance dogs have a sense freedom because they can walk about provided they stay within safe boundaries (such as staying on footpaths and not stepping into the street) and their dog understands these boundaries. Over time they learn from the dog’s example of how to behave safely and calmly when walking in public places. The dog can also be trained to bark an alert if Natalie is trying to climb over a fence or out a window. Having a furry, calm, constant companion is also soothing, sensory, and relieves anxiety for children with autism.
We are very excited anticipating the arrival of Natalie’s dog as we’ve seen and heard how positive the results have been for children with similar challenges. It will be amazing to be able to do things as a family. Each service dog takes over $48,000 to train and families are asked to contribute $20,000 towards this through their own fundraising.
We really appreciate all the support and help we are receiving from people as we strive to reach our $20,000 goal.
I"m Natalie's mother and fundraising on her behalf.
A Year with Rufus 1 December 2020
What a great year it has been since Rufus arrived! They tell you that a service dog will change your life, and it really does. Natalie has been out to places we were just too afraid or too jaded to take her, but now we know she can't run and get herself into danger thanks to Rufus. You'd think a child would resent being tethered to a dog, but she has realised that this actually represents freedom for her as now we go wherever she wants to go and experience new things, like the zoo, the museum, the beach, bushwalks and picnics. She's been to a movie for the first time in her life, and although her attention span didn't last the entire movie she got through a good chunk of it and enjoyed herself, and I could relax without worrying about her climbing over all the seats and running around the theatre. We still have our fundraiser open as we're trying to complete the $20,000 goal for Assistance Dogs. Costs have gone up so much that it now costs around $70,000 to train and place a dog, so our $20k contribution is needed more than ever.