LapCI supports young cochlear implant (CI) users as well as their families on their hearing journey. The support that we offer comes in many forms, as we recognise that one size does not fit all. In this article we want to highlight why peer support matters at any age and life stage and where you can find the people and the support that work best for you.
Contrary to what some might fear, peer support is not (or at least, not necessarily) about sitting in a circle with everyone going one by one and confessing their innermost feelings. It is not about opening up to complete strangers the moment you sit down. And it certainly does not mean that you owe anyone any information about yourself or your child that you are not willing to give.
Despite this, the aforementioned scenarios seem quite persistent in people’s minds. If you have never actively sought out or needed support from peers (other than your immediate family and friends), hearing the term ”peer support” (or in Finnish, ”vertaistuki”) may give you something akin to heebie-jeebies. ”Me? Why would I need to talk to strangers? Can’t I just sort out these feelings and thoughts by myself or by talking to professionals? What can a bunch of strangers offer me that the doctor at the hearing center cannot?”
We have even received feedback over the years saying that we should avoid using the term peer support, because it has such a negative connotation to some. We understand why those who are new to the concept and who are still in the process of working through the initial shock stage may resent it. At the beginning (when your child has first received the diagnosis), the constant flux of new information can feel extremely overwhelming, and you may not want to talk to strangers at first. But once the initial shock and emotions wear off, you may be ready to start thinking about your next steps. Our peer support network is there to make you feel less alone and to help you see that ”hey, life goes on!”
The kind of peer support one needs depends on a variety of factors. Here is how peer support may look like at different stages in life.
For the smallest CI users peer support is, essentially, about hanging out together and playing in a shared space. The children may not even talk to each other much, but they play hide-and-seek, do crafts, go for walking trips in the woods, or they play on a jungle gym together. To an outsider this may look like a passive group activity, but in reality it is anything but. Children are keen observers, and they notice at an early age differences between themselves and other children. When they see other children with CI’s, they quickly take notice and tell their parents: ”Mum, I saw another kid who had CI’s!” A simple playdate can be extremely impactful for the development of their sense of self. Through observation during play they realise there are others like them and that the CI’s are an ordinary thing.
Ideal LapCI events for small children and their parents: Leikkitreffit (playdates), Pienten lasten vertaisviikonloppu (peer support weekend for families of small children), Musapaja (music workshop), CIsumusa’s speech music playschool.
For young CI users in primary school, peer support is often centered around a joint activity. At this age children usually like to do things together, especially when it’s an activity where everyone gets to have loads of fun. Games, sports, crafts, amusement park trips… The key is to have enough time to chat during the activity, and particularly after. While at the beginning it might take a while to warm up to others, once it is time to sit down and chat over a burger, the children may suddenly open up and connect over similar interests (aside from hearing loss), even exchanging phone numbers. We’ve witnessed more than a few BFF’s form at our events, and nothing brings us more joy than seeing the children run up to each other after a long time apart. Especially for those who are the only CI users in their school or in their hometown, events where they get to meet up with peers and where they can see that they do not stand out in any way are incredibly important for their self-esteem.
Ideal LapCI events for school aged children: Kuulopaja day events, Kuulomuskari hearing music playschool, Musaleiri (music themed summer camp), Lasten jouluinen taideviikonloppu (Christmassy arts weekend for children), lasten urheiluleiri (sports camp for children).
At this stage, peer support can mean very different things to different teens. For some, the best type of peer support is still activity-based, where you get to do and experience fun things together. For others, any activity that seems too ”organised” is likely to scare them away, as they prefer events that are more low-key and involve simply hanging out together. Teens have diverse interests, and it can be a challenge for them to find others who are at a similar wavelength.
The first step is always the hardest: signing up for an event where you don’t know anyone beforehand, but where you might meet likeminded CI users and other deaf or hard-of-hearing (HoH) teens. But once you do get the courage and do it, you will not regret it! Even if one doesn’t end up making lifelong friends on the first try, getting to hang out, play games, laugh and chat with others who have experienced similar challenges with hearing loss reduces feelings of loneliness and strengthens their sense of self and identity. It is normal for any teen to question their identity and place in the world, and feel like the ”odd one out”, which is why talking to others who feel the exact same way can be both healing and affirming.
Ideal LapCI events for teens: Syys-/kevätleiri (weekend camp for teens, usually held either in autumn or in spring), Kuulopaja day events, Suurleiri (a summer camp for teens), kielimatka Englantiin (language trip to England, held every few years), nuorten urheiluleiri (sports camp for teens).
LapCI focuses on organising events for under 18’s and their families, but that doesn’t mean that our support ends on one’s 18th birthday. Once our members have ”aged out” of our events, we are always happy to direct them towards peer support groups such as Moottorikorvat, where deaf/HoH young adults arrange meet-ups all over Finland and online. Moottorikorvat is a great example of peer support group where no matter your stage in life – whether you’re moving places, studying, travelling, enjoying partying, working or raising children of your own – you will always find others in a similar situation and people to hang out with. In addition to Moottorikorvat, Kuurojen Liitto also organises peer events and camps for deaf/HoH young adults. You can find their most up-to-date event calendar here.
Parent-to-parent peer support has always been an important part of LapCI’s mission. When we gain a new member family, one of the first things we do is to connect them with another member family in our network. We know – from experience – that hearing the words ”I’ve been there, I can imagine how you must feel” from a parent of an older CI user can make one release a breath they didn’t even notice they were holding.
The kind of peer support a parent needs can depend on a variety of factors, such as the age of the child and whether they’ve already received their CI’s, whether the child is in daycare or school, whether the child has any additional disabilities or conditions, and what languages and/or communication methods the family uses. Some may want to focus on asking lots of questions from experienced parents: how they have incorporated hearing and speech intervention in their day-to-day life, how they managed to make their toddler keep their sound processors on all day (and not throw them on the floor), how does the support at daycare and school look like, and so on. Others may want to talk about all the fears, thoughts and emotions they’ve been going through. In either case, both participants come out of the conversation feeling less alone. Over time, the more often one meets up with other families – e.g. at LapCI events – the more natural it becomes to chat up with any new parent of a CI user.
Ideal LapCI events for parents: Vertaistreffit (peer support meetings on Zoom), vanhempien vertaisviikonloppu (peer support weekend for parents).
It is important to us the whole family feels included in our community.
If you are a parent to a CI user or your child has recently received a hearing loss diagnosis, and you would like to talk to someone who has been in the same shoes, contact us today. Email us at info(at)lapci.fi and let us know your situation. Even if you don’t know how we could help you, or whether you’re even ready to talk to a peer, we would love to help you in figuring it all out. You can also call or text us (WhatsApp works too), our details are listed below. Our organisational assistant Helmi is a CI user herself.
Janet GrundströmManaging directorTel. 040 091 4583E-mail. janet.grundstrom(at)lapci.fi
Isa PulliCIsupaja project coordinatorTel. 045 859 0888E-mail. isa.pulli(at)lapci.fi
Katariina VarjonenCIsumusa project coordinatorTel. p. 040 579 1450E-mail. katariina.varjonen(at)lapci.fi
Helmi ViljanmaaOrganisational assistant, CI userTel. p. 040 664 6059E-mail. helmi.viljanmaa(at)lapci.fi
To read the article in Finnish, click here: Vertaistuen voima.
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