In the previous posts we have discussed how to make church welcoming and accessible to families with autistic children. This post we will look at the pastoral side to looking after the whole family. Out of this series, this is where my heart lies. Being a mum of 2 children with autism and 2 neuro-typical children, I know how hard this journey is, I know what its like to be on the receiving end of judgement and poor care.
There is so much that I can write and so many experiences I could share but I want this to be a post about helping others. This is a different parenting journey and to call it anything else completely undermines the parents. We may experience similar scenarios but it is definitely not the same as parenting typical children. The view from the outside, of a child that might not seem that bad or that autistic, is very different to the work that goes on from the inside.
From the outside my children may not appear 'that autistic' which is mainly due to the fact they have high intelligence levels (not showing off this is from cognitive assessments) but their anxiety and sensory needs are extremely high and limiting in their day to day. We spent many years walking on eggshells, because my child's regular meltdowns were explosive and violent. We had emergency anger management plans to keep his siblings safe and help us manage. There is no 'cure' but we learnt his triggers and strategies to help us get through it. As my child became bigger, I have received wounds and been hurt through him learning to manage his anger. We have all had items broken and destroyed. I have also witnessed him internalise his feelings to self harm and this is equally distressing. Some children with autism look like they cope well but instead bottle everything up and when they come home the meltdowns begin, because this is where they feel safe and secure. Not all meltdowns are violent towards others/items/themselves, and when they are, it is not because of a learned behaviour from parents or they've let them get away with it - please do not judge the child or the family - this is most unhelpful and damaging. Judging whether you think a child is autistic enough for the family to need help - is also wrong - do not underestimate the autism from the small snapshot you see. In essence, do not judge or bundle all autism families in the same box at all - ever - get to know the family and their situation.
Pastoral care for the family needs to be adaptive and the team supporting should have some knowledge about the different stages parents will go through. For me personally, I was overwhelmed and didn't know how to ask for help or what people could do to help. Be guided by the parent on what support they would like to receive but below are some ideas:
Pre & Diagnosis
A parent could be in denial or they may have suspected something is wrong for a while. They play a game of 'yes my child needs help' to 'all kids go through these phases'. Encourage a parent to seek professional medical help with a list of their concerns/examples of the behaviour. Some GP's are great and listen, others sadly don't. Help the parent be heard, be their advocate. Children do develop at different times, so sometimes its a phase but sometimes it is something more - do not be dismissive and cling to the latter based on your own experiences - it does not hurt to get a professional opinion. If it is behaviour, often referrals can be made to help you through this. It is not wrong or weak to seek help. Raising humans can be complicated, use the resources available. Pray and journey this with them.
During the diagnosis period, there can be long waiting periods between appointments. My first child took over a year of appointments before diagnosis was made and for my second child, after 18 months going back and forth from the hospital and still not receiving an assessment, we chose to go private. The waiting is stressful. Getting babysitters for appointments, is stressful. Getting your child to wait in the hospital for their appointment is stressful. Trying to not show any stress or frustration so your child will not pick up on it - is stressful. Do not underestimate what the family is going through. They may need encouragement to keep going. The point above still stands. Offer help for appointments - dropping and picking up at hospitals (so they don't have the added worry of trying to find a space or how to pay for the expensive car parking charges), babysitting other children, offer to wait and support the child, so the parent can focus on what the doctor is saying or be a scribe for the appointment. Often doctors expect you to talk about all the bad things in front of your child and as a parent this is uncomfortable. Having an extra pair of hands to play or wait outside during this time is helpful.
During this time, there could be many pieces of paperwork floating around - offer to help the parent get paperwork and important numbers organised. Once diagnosis letter is received make several photocopies, as they are often needed.
Once you have received the diagnosis, this is stressful even when you were expecting it. Parents can go into denial, relieved or fearful for what is to come. Help them work through their feelings singularly, as well as a couple. Help them to reconcile what is happening to them to God, who is still loving and good.
Telling other family members. Other family members can react with denial, anger, relief, fear or apathy - sometimes they look to the parents for answers or blame them for what has happened. Breaking the news can be hard for all sorts of reasons. Help the parents through this.
Telling the child and siblings - this can be ongoing depending on their level of understanding or they may not wish to tell their child/other children till they are older. There are many books and different methods, help them to choose the one they feel most comfortable with.
Diagnosis helps you to understand what is going on with your child but this doesn't bring you help. A child is not automatically provided with help and neither are the parents. Our medical system is currently overloaded so unless your child is on medication they will be dismissed shortly after diagnosis. For us, the paediatric team will not see children once they turn 11. He was supposed to be transferred to CAMHs at 11 but they replied to say autism is not mental health and they will not see us, so now we have no medical support. This is not uncommon. Help parents with signposting to organisations that can provide different support - whether it be CAB for benefits, other parents going through the same thing, support charities, children's services or young child carers for siblings. Be familiar with what your area offers and sign post the parent to them.
Diagnosis helps the parent and child to understand what is going on and why, however for autism is does not stop the meltdowns and behaviours. Now begins the journey in learning how to help your child navigate through life managing their difficulties. Teaching them how to use strategies to cope with everyday life - parents have to find out and learn these for themselves, often through courses and online research. This does not just appear and some parents find it very difficult to access this help. Help them to get help.
Before diagnosis happens, research. Many charities will help you pre diagnosis and can talk you through assessments and different techniques that could help your child and situation. I had no idea I could access help beforehand. They may have access to books or sensory libraries. If you have the funds, there are private occupational therapists that can help you to manage sensory difficulties as well as speech therapists to help with communication. Money does take away some of the stress of waiting and getting help but depending on the child, it won't help the parent cope with violence, isolation, judgement etc.
Living with the Diagnosis
Unfortunately the rate of couples splitting up when caring for a disabled child is high. Please help the couple with baby sitting so they can have time together as a couple. Encourage the couple in their marriage and to continue to honour and respect one another.
Spend time with the family and get to know the care routine so that you can offer to babysit. Or help them to find someone who can cope with the demands of their child so they can go out.
Looking after a family with children with disabilities can be all encompassing - help the parents to look after themselves. Whether this is through baby sitting, laundry, hobbies, shopping, providing a meal - help them to take a break and to be kind to themselves.
Loneliness - Looking after a child with disabilities can be a 24 hour job and very different to typical parenting. This can create feelings of loneliness and isolation. Help them to feel part of the community. Help them walk in their faith, especially if they cannot be part of church meetings.
Guilt - quite often the parent can feel so much guilt for the siblings. Perhaps offer to look after the disabled child so that the parent can spend quality time with the other children. Or offer to take the other children out so they (the children) can have respite.
Grief can be ongoing. As a child moves past a milestone other peers are reaching, the grief can come back. When there are setbacks in development, the grief can return. Do not dismiss this - it is a real grief. Support them through this and help celebrate when their child hits achievements that perhaps others take for granted.
Judgement - parents receive a lot of judgement when they have a child with a disability from all places. This is really hard to deal with - help them to navigate difficult comments and situations.
Identity - parents of typical children can lose their identity, this is magnified for parents who have children with disabilities - help them to see who they are through Gods eyes. Often a parent needs to give up work which can have a financial impact upon the family as well as losing part of their self identity. Don't forget that the remaining working parent is also a carer.
Paperwork and appointments. Help them to be organised and get into a system with their paperwork and to-do lists. Filling out forms and applications. Creating a child passport to give to groups that the child may attend.
School - sometimes school can be a struggle and it is a fight to get your child into the right setting. This is really stressful. Help with school drop/pick ups, help to be an advocate or scribe for parents at meetings or take them out for a coffee/meal after a stressful meeting.
They may need help recording a diary of events when their child cannot cope and is taken home etc or of incidents at school/groups/home. This all needs to be filed and taken to meetings (paperwork) as proof of not coping/requiring additional help
If a child needs an EHCP, this can be a drawn out stressful process. There is a lot of paperwork and can entail going to court. Support them through the process - help them research and encourage them through set backs/delays.
Sometimes the parents need to attend training sessions and this means they need help with caring of their children.
Sometimes the parent may need help researching therapies to help their child, along with different school settings, strategies, food or medication
If there are enough parents, perhaps the church could set up a parent support group looking at different issues they are uncovering or bible study on how God helps through grief/disappointment/identity
Sometimes a financial gift can go a long way in reducing the pressures the parents face - it can help pay for equipment, courses, therapies and respite.
Challenging behaviour - not all but sometimes the parents are on the receiving end of challenging behaviour. This can come in many different forms for example only sleeping for 2 hours a night and that's with medication, smearing, food refusals - pica eating non edible items as well physically aggressive behaviour. Unfortunately, the physically aggressive behaviour is often an accepted form of domestic violence but it is not acceptable. By accepted I mean parents are expected to tolerate violence due to the love they have for their child and understanding that the child's behaviour is due to their autism rather than a choice. Social services etc will rarely raise an eyebrow over this unless it is directed at a sibling, because then it is putting a child at risk. I do not believe that anyone should have to live under violence. This is a difficult situation but care is needed here. Often it can leave the parents defeated, ashamed, fearful and worthless. It is difficult to talk about and there are few places a parent can turn to help. Walk with them without judgement, research and sign post parents to help, as the parent could feel unable to do this.
The parents of a child with disabilities is already going through so much and if they find asking for help difficult, being let down could be a massive blow to them. If help needs to be withdrawn, try to give them warning and time to adjust. Make it clear what the pastoral team can and cannot do to help. Place boundaries to protect the pastoral team and the family. Some of the above ideas can be one off's and others require more of a commitment. Perhaps have a team of support around the family and utilise the different gifts of the church. Perhaps have one person in charge of the whole care for the family, so the parents do not have to add another thing to their already full to do list. Obviously, the parents may have different ideas on what they need to help - ask them what they would like - the list above is to give some ideas.
The parents may be operating on very little sleep or may be living with violence and demands. Finances are tighter too. They are not in a position to be able to give back, let them be served and cared for by the church, guilt free. Assure them that this is a gift of grace and help them to learn to accept help. Sometimes the reason people have difficulties receiving help are deeply held from past experiences or traumas and may need help in terms of counselling to let others in.
The church can provide the much needed support parents need in order for them to help their children thrive. We are not special, we are the same as you - we were not made with the ability to cope with a lot of stress - we just have too. But we don't have to do this alone, the church can provide practical and spiritual help. We can be community, we can be church together.
What ideas do you have or how do you offer support to families?
I've written this series based on my own experiences and observations of raising children with autism and attending church. I'm not a professional but someone who walks this journey. There have been times I have been on the receiving end of judgement, no pastoral care, pastoral team willing to help but unsure how and exclusion. I have also experienced my children having meltdowns because of how the church/service/training etc has been at church. I found it difficult to speak up and navigate through, now I am little further down the road I want to help others, so they do not feel as I did. God is good and church should be a place where all people can know His goodness, learn who He is and be a part of His church.
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