One of the questions often asked by families is how do we ‘stay on top of it all?’. As one parent said “suddenly we’re supposed to know how to navigate a world we know little about”. One thing is certain, life will not be the same. The tips below were developed by other families about what they found useful to try and ‘stay on top of it all’.
Taking a break
Everyone needs to take a break and that includes you. However, this is often easier to say than do, especially if you are new to an area and have few friends and family close at hand. If this seems too hard, start small with a short walk or coffee by yourself. Having a break can help physically and mentally and allow you to get your head above water so you can see a little clearer.
You may be able to get some funding to assist with getting a break through your local NASC (Needs Assessment and Service Coordination) service. Sometimes families work together to help each other out so they can take turns giving each other a break. Friends and family/whānau (your natural networks) may also be able to help you to have regular breaks.
You may have paid support staff coming into your home, if you do remember that ‘what happens in the home should stay in the home’. It easy in these situations for boundaries to be blurred. Clearly communicate your expectations and boundaries.
It’s easy for any relationship to become second to the needs of the family/whānau. Try and find time for just you and your partner. This might be hard to achieve at first, so don’t worry if it’s just for a short time or something simple like a cuppa at the end of the day.
If it helps, schedule in a regular time that works for you both, or have a regular date night. Look for things you may be able to do as a couple, or interests that you can share.
The other members of the family (ie. siblings) may also need to have their own space, or time out. They may want some planned one on one time with you so talk with them and work out how this might be achieved.
Siblings may also want to talk to other siblings who have similar life experiences. You may be able to do this by connecting to local support groups. Parent to Parent offers SibDays which are one day events for 8 -18 year olds. These occur throughout New Zealand and provide siblings with an opportunity for discussion, sharing, games and activities.
I need encouragement
It can be very useful to link up with other parents who understand what you are going through. Organisations like Parent to Parent, NZDSA (New Zealand Down Syndrome Association and Autism New Zealand have local support groups throughout the country. Or you can contact groups like the Complex Care group and be added to their closed Facebook page.
Other things that can help include:
Have someone you can talk to who can provide positive encouragement and support (this can be family/whānau, a friend or a professional). They need to be able to listen and not judge.
Connect with like-minded positive people.
Subscribe to websites or listen to podcasts which provide insightful and motivating information and articles.
Describe your child or adult family member in a ‘positive light’ using positive language and ask others to do the same. Ask people to be mindful of this. Positivity can help challenge and identify negative thinking or thought patterns.
Stay connected with what’s going on in your community, it’s too easy to become disconnected from community life.
Help – things are not moving
It might be time to re-group – get your key supports together (this could be friends, family/whānau, professionals) and talk about what needs to happen next
Take time to think about where you are at and who can help you think, plan and do? If it’s not clear, make a plan. That can sound daunting, but a plan is simply stating what you or your family/whānau wants and how you will be supported to get there.
Other tips that can help include:
If you already have a plan like an IEP (Individual Education Plan) or Transition Plan, organise a meeting with the school to re-look at the plan and get things moving again.
Sometimes learning seems to be on an upward curve, then suddenly stops, check to see if the person is taking time to fully understand what they have learnt. Give them the space to do this, before moving on.
Check energy levels – this will change and vary over time. Do you need a break? Does your family/whānau need a break? It’s ok to take time to recharge before moving forward.
If you or your family/whānau are ready for a new challenge think about what to focus your energy on and what will make a difference? Make a list and prioritise what will have the best outcome. It may be helpful to talk with someone who is not emotionally connected with your situation.
Right from the start make sure your child/adult family member is involved in the discussions about their life, and that they are supported to make choices and informed decisions. Some people may not be able to do this verbally but they can let you and others know what they like or don’t like.
How do I communicate what I need effectively?
It can be challenging to negotiate what you want particularly when things aren’t going well or when the relationship with the professional does not feel equal.
There are some resources on the Care Matters website aimed at helping to make this easier, such as; managing conflict, communication, influencing change. Effective communication skills can help you advocate for your family/whānau member.
Remember to pick your BATTLES, know which ones to roll up your sleeves for and which ones’ to leave. You cannot fight every battle, so choose which ones are going to make a difference.
Working with professionals
You are likely to have other ‘professionals’ in your life and in your home. Try to build good relationships with these supports. They may become pivotal to you and your family/whānau.
BUT, if it’s not working with that person, or they aren’t the right fit for your family/whānau, ask for someone else.
Other tips that can be useful include:
It’s ok to say ‘NO’, you don’t have to explain why. You’re allowed to set boundaries for you and your family/whānau.
It can be useful to keep an electronic diary or calendar with ALL your appointments in it so that you can schedule appointments together (ie. at the hospital)
Try to limit professional visits in your home e.g. one day per week (if possible). You decide what’s right for you and your family.
While it’s important to understand the diagnosis, always focus on the person and their unique attributes (one size does NOT fit all).
Change the thinking by focussing on what the person ‘can do’. Often the focus is on what the person ‘can’t do’ (for funding purposes).
Take time to understand the system, and challenge it when you need to. The system is NOT always right, but it IS what we have to LIVE with. And remember, the system is made up of people who make policies and therefore people and policies can be challenged and changed if they are not working.
Language is powerful – use the language the ‘system’ uses to describe what you need.
Refer also to ‘Managing Relationships with Professionals’ under Looking After Myself on the Resources menu.
Help – I’m in crisis
There may be times when it just all feels too much and life’s getting harder. Talk to someone you trust, a friend, family/whānau, someone from church, or other parents (in similar situations). There are people who are out there who care.
Understand those transitional times and the impact of grief, which can rear its head when you least expect it. A comment made, a careless word, a ‘milestone’ that won’t be reached, can sometimes bring the world crashing down.
It can be very helpful to share the load by talking to others in similar situations and telling it ‘like it is’ to someone who understands.
Family/whānau often talk about how important it is to laugh. Sometimes finding that person who ‘gets it’, to laugh at the unlaughable can help pull you through.
Making a difference
Family/whānau have started (and govern) many trusts that support families throughout New Zealand.
Pass on your own insights and learnings to support others in their journey.
Get involved and contribute to making things better, for yourself and your family, or for others.
It’s family/whānau voices who have created the greatest change.
It’s family/whānau united who can make the greatest difference.