This blog is written by Michelle Nicholson, volunteer with lived experience on behalf of Rescare.
Having an autistic child or child with SEN needs can be challenging. It’s not like we get taught what to do at school or by others, it’s something we often have to just figure out on our own, often without much help. Even when we do ask for help, it seems like there is not the help available, or the kind we need. Therefore, community and sharing personal experiences can be invaluable. I like to share my experiences as I am autistic myself and also have been a carer of a child with SEN needs. Equally, I am studying a Masters in Psychology and I hope to help improve things in the future for ASD and SEN people.
Self-care – if you can, take time out for yourself. This will help with remaining healthy and happy and we can take care of others more productively when we take care of ourselves too. Think of it like recharging a phone. If you don’t recharge a phone, it won’t work as a phone anymore, or it at least will not work well for long. If you charge it regularly when needed, then the phone will be more efficient.
Educate – family and friends about what is going on. Some may not want to learn more, and it is ok to have boundaries with people.
Get help – if needed. Sometimes it is good to get things off our chest to a therapist, as friends or family may not have the capacity to help or understand. Also, if your romantic relationship is under strain, couples counselling can be great for helping. Remember, we all need help sometimes and many people use therapy to help with all kinds of relationships. Additionally, if someone offers to babysit, take it if you can.
Networking – many parents feel isolated due to a lack of understanding from others. Join a group for parents either online or face-to-face. Peer support has been found to help.
Routine – it has been found that routine is important to children with autism. Although we can’t always keep to a routine all the time, having routine does help. However, as life is complex, it is also sometimes good to be spontaneous. It is trying to find a balance between having a routine, yet still pushing our child slightly and occasionally. We may not always find the perfect balance and that is ok. Finding out what your child can and cannot cope with is a slow, steady race. Children change in time too, so it is good to keep trying different things occasionally (when they are feeling less anxious).
Special interests -you will probably be aware if children have special interests, let the children enjoy those interests. Yet, it is also good to have some time away from the special interests too. They interests can come in handy for motivating a child also. For example, clean your teeth and then you can play with your animals before bed.
Always have a spare backpack packed at all times – this could include their sensory toys, special interests, spare clothes, a drink, some snacks, ear-defenders etc. This is handy as we cannot always stick to our routines or there may be an emergency. When this happens it might involve a trip out, you may be stressed and forget to take something that keeps your child happy.
Christmas time and holidays – these can be extra stressful times for parents. The child may be off school, they are out of their routine, so behaviour may be impacted. Everywhere might be really busy, so it is hard to take them out, especially if they do not like loud noise or busy places. Yet, they might not also like staying in, so it seems like no matter what you do you can’t win. Children often become extremely overwhelmed in holidays, their sensory issues become over/underwhelmed and it can often lead to meltdown. Don’t feel guilty if you have to set boundaries with people. An example might be that you keep all of their presents for Christmas day and do not let them open them whenever someone wishes. Sometimes children can expect presents from every guest when they start doing that. Or it may overwhelm them too much. Whatever happens with you, try not to feel guilty for saying no to other people.
Don’t be too hard on yourself – mistakes will be made, it is all a learning curve. Even professionals do not know a lot about autism/learning difficulties, so breathe and give yourself a break.
Do not worry too much about the future – children progress, then regress and are constantly changing. Sometimes it can seem like you’re taking one step forward and then going two steps back. This is to be expected. Children with autism/learning difficulties usually get there eventually, it just might take a little while longer. We don’t know what the future is going to hold, so it is best to take it day by day and remember that things nearly always change. A diagnosis of autism is just that. Autism awareness is improving all the time and there will likely be more opportunities/strategies available in the future.
Autism brings many positive traits too – most of all, your child will have traits that other children do not. When they hit a milestone, really celebrate it, even if it does not happen as often as it does for others. Some job opportunities now will only hire autistic people, as people are beginning to see the strengths of having an autistic brain too.
Overall, it’s good to remember that you know your child the best and it is often the case of just trying different things until you find ways that help. Research in ASD and SEND needs are in their infancy, so try not to feel bad about not getting everything ‘right.’ The professionals don’t know everything either and if they don’t, why would you have all the answers?