Wanderlust, of the least desirable kind

Skipping joyfully into unchartered territories of parenting a wandering teen🏃‍♂️

The school bell rang as it always did,  my daughter grabbed her AAC and walked out the classroom on her way to her next class. Through a crowd of students, and school staff, all going about their normal daily business.

But she wasn’t walking to class, she was uncharacteristically alone. She skipped joyfully through the quad, across the school field, with a smile on her face and flapping her hands happily as she went. She walked into a neighbouring property, went in their open door and in to a strangers kitchen.

Meanwhile, back at school, her teachers had realised that she was missing and were left scrambling. They ran, they called - but even if my daughter was in shouting distance, she rarely responds to her name. Staff checked CCTV footage to see where she was in school grounds, if she was still in fact in school grounds.

Thankfully this story has a happy, non-sinister ending. The home owner found her in happily eating chocolate in the kitchen, rang the school office and my daughter was escorted back to school without incident really quickly.

This was upsetting for everyone involved, but this was no one’s fault, and I won’t, I can’t, entertain a seconds thought on this subject.

If we are going to point the finger at anyone, maybe we should start with ME - for not having any trackable device on her. She is a very active teenager, who happens to be autistic, non-speaking, has a wicked sense of adventure and no fear of danger. How did we get to 14 without this happening already, that is the real question.

My girl has a puff of curly brown hair tied back in a brightly coloured scrunchie, she often wears rainbow coloured earmuffs. She hums and waves as she walks, why didn’t anyone she passed notice she was alone, and think to stop her? I encourage school to keep her involved and known in school life, partly for her own engagement, but also partly for moments exactly like this. I can only hope that if there is a next time, that someone helps.

You could also say that my daughter is as much to ‘blame’ for leaving class without her usual support person/other students. Teachers get distracted, especially during transition times in the school day. Any other day, she would have been happy to sit there and wait until it was her turn to go to class with the group. For some reason, on this day, she decided to walk out. I have talked to her about this, but it’s another one of her little secrets she keeps, I don’t know if I’ll ever be allowed to know.

My girl has very high ORS funding for school, which is the top 1% of students with additional needs, yet it only covers approximately 17.5 out of 30 hours support that she needs. The rest has to be topped up by her school. Are you listening, Jan Tinetti? Current government funding for disabled and neurodivergent students is inadequate and downright dangerous in situations like this, so while we are pointing fingers, let’s direct one in their direction.

It gave us all a terrible fright, and I can’t tell you how many tears or hours I lost over the following days just worrying about all the ‘what-ifs’ in this experience. She could have turned in a different direction, heading for our house and tried to navigate a busy, unpredictable road.

She could have headed towards the beach and tried to walk out to sea until she lost her footing and slipped under the surface. She could have gone to the wrong house, crossed paths with the wrong person. Yes, my thoughts went to very dark places, which is totally expected, but not recommended.

We were lucky, this time. All we can do is plan better for the next time and hope that good luck stays on our side.

Part of my journey as a parent has taught me that I can’t wallow in those dark times too long, it’s not healthy, and it’s counterproductive. So instead I began a mission to find out what options are available for those who wander, and thought I would share them with you. Because, as you will see – nothing is easy, everything is a mission. No help is ever EVER handed to us on a silver platter. So we help each other :)

WANDERSEARCH

Wandersearch/Wandatrak are small pendants that are radio signal frequency transmitters, you can apply for one through a non-profit organisation in your region, who work in partnership with NZ Police to deliver these life saving devices to people in the community prone to wandering, in particular those who have dementia or are autistic. I found out about this through a google search, and a nice chat to someone at the local police station, who backed up all the good testimonies I read on the wander search website. I made contact with a local charitable trust, who have beena amazing and arranged delivery really quickly.

They cost $300 plus $10 a month for maintenance, but the good news is that you can apply for funding via Individualised Funding (if you qualify for it) to cover this. I filled in a profile and submitted a recent school photo of my daughter, which is passed on to police. In the event that she goes missing, we just have to call 111 straight away and let them know she has a pendant and they have all her info at hand, and can track her whereabouts from there.

The pendant is waterproof and detectable anywhere in NZ, as it doesn’t run on a cellular network. It has no moving parts, so it can’t be switched off, and it doesn’t need charging.

On the negative side, you can’t track it as you could a smartwatch or an apple tag. The pendant also doesn’t have anything on it to identify the wearer by name or their disability.

Such a great and helpful product, I wondered why it wasn’t more readily available for families, and why it was up to local non profit org’s to run the initiative. It reminded me a bit of AAC and Talklink Trust. Both life changing interventions being underfunded by central govt and left to charities to pick up the slack.

So, the next step was to find something that would help my girl be instantly identifiable. I worry about people misunderstanding her body language or not responding to requests, especially from overseas examples of when the police are involved with autistic and non speaking people.

MEDIC ALERT

MedicAlert packages start at $45, are renewed annually and include a free pendant or bracelet, and ID cards to identify the wearer.

The thing is though – my daughter hates jewellery. The wandasearch is going to be a mission to get her to wear in the first place! Now we potentially have to add a Medic Alert pendant, which makes me worry.

Her AAC has her name and a contact name, and classroom details on the front screen, but would someone unfamiliar with AAC think to look at that if faced with an agitated, non-speaking teen?

Medic Alert is also an expense that can be covered by Individualised Funding, and there are lots of different options for the jewellery. Top tip: the childrens bracelet is easily removable as it has a Velcro fastener, which isn’t ideal!

APPLE AIR TAG

Our third purchase was an Apple AirTag which is pretty inexpesive at $59. Buyer Beware, the slightly more expensive option with a leather apple keyring at $65 is the price for the keyring alone, the AirTag is not included! I had a good laugh about that with the staff at Harvey Norman, they said I wasn’t the first, most definitely won’t be the last customer to almost make that mistake, as the photo on the online store is provided by apple. Non apple keyring to attach the AirTag are pretty inexpensive at $29

The AirTag is easily connected to your apple device by Bluetooth and allows you to locate the wearer via the ‘locate my’ app on your iphone/pad etc. But this totally relies on the wearer being in an area that has cellular coverage, and the tag not being dropped, damaged along the journey.

Other options include smartwatches (with tracking capability), non-medic alert identity bracelets, but to be honest there are a real lack of sensory friendly jewellery options, so three separate purchases was enough for us at the moment!

Of course in every case, we should respect the privacy of our autistic loved ones and not track them like an ubereats delivery if not necessary.

Ideally, whānau would not have to commit to hours of google searches to find their options to keep their wandering loved one safe.

It would also be great if there would be a ‘one stop shop’ for all these things - not just information, but option wise.

Best case scenario would be if we could have a type of device that suits her individual sensory needs. Something that attaches to a belt loop, or a shoelace rather than just a necklace pendant. There would be a device that had both tracking capability and an ID attached to it. And also, an added ID like a sunflower lanyard to instantly show people that the wearer had an invisible disability. Dignity and safety, first and foremost.

These are ‘unchartered territories’ for us as a whānau. Our girl has always exuded unbridled joy and zest for life. She has also existed within parameters of society, an offshoot of her primary school experiences in a more controlled setting. Since she started college, her opportunities to try different things, and go different places has exploded, and I think/fear somewhere along the way, her ability to decipher what is safe/less safe has been impacted. It’s not a bad thing, but just something we have to be aware of, and try to support her with.

As much as I detest the idea of tracking her, we need to keep her safe. Rather this than agreeing to a MoE funded lock on the door or fence, because that would go against every reason we chose this school for her.

It is also important to identify the reasons why she decided to walk out of class. All behaviour is communication, what was she trying to tell us?

For us as whānau, there must be a balance between safety and freedom; living life with no barriers, within the realms of caution. We need a big, wide world of opportunities to exist, but for there to be tangible roadblocks between her and danger.

And as for me, I need to let go of any feelings of anxiety and loss of trust still lingering. The ones that keep me awake at 2am and all the nagging ‘what ifs.’