Has your child been recently diagnosed or do you suspect your child has neurodivergence?

Here are some suggestions and top tips,kindly written for nkind by two parents of neurodivergent children (One mum of two boys age 9 and 13 with trauma, adhd, autism and dyslexic profiles, and a mum of two girls age 12 and 14 with autism, adhd and down syndrome.)

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Families and parents of children who have recently become diagnosed or who suspect their child is neurodivergent whether you are on a pathway to diagnosis or not can be a complex, ever changing minefield of challenge and emotions. Often parents go through a kind of grief process. Some feel relieved that they have finally found their tribe and some feel constantly guilty, and some feel overwhelmed. Some are despairing and weary of the already long fight. Some are already looking to the next step, next challenge - some are feeling all of the above and more - what is the right way?

All emotions are valid and sometimes we just need to let ourselves be, and feel all the emotions.Take a breath, a pause, a break from fighting the system and the barriers, a break from the constant communication and following up that email, this phone call, the other conversation with this professional, and the senco and the class teacher.

Some of the best schools will change nothing post diagnosis as they have been providing ‘needs-led’ support since your child’s needs have been identified and are hopefully being met, rather than ‘diagnosis-led’. Many mainstream schools should meet your child’s needs with reasonable adjustments, possibly some extra support depending on your child’s needs. A diagnosis does not automatically mean your child needs an EHCP (education, health and care plan). Many neurodivergent children do not need an EHCP. 

The SEN code of practice 2014 clearly explains that ‘teachers are teachers of all children’ for sencos and all teachers. Your child should be spending the majority of time in class with the teacher and not always with a TA (teaching assistant) outside of the classroom. The teacher is the most qualified person in the room and best placed to plan to break down the elements of the lesson objectives and therefore teach and support the child/ren with the most needs. TAs are wonderful and may know important details about your child but the actual teaching should be done with the teacher.Of course, repetition is important and small group work or 1:1 guided groups may happen in the afternoon with a TA around the academic subjects or social skills, or emotional check ins such as ELSA, Thrive etc

Self-care as a parent and carer is so important. As the saying goes ‘oxygen masks on first before attending to your child’s’

Here are some top tips to stay sane, and be the best advocate for your child whilst maintaining a sense of self. 

• Remember your best is different on different days:

Some days you may be tired, hormonal, stressed, life happens and your window of tolerance can be smaller than on other days, when you may have more patience, more time, more zen to tackle the day ahead. Your child’s best will vary too and although you can agonise why any dysregulation happened, were they hungry, tired, thirsty? Just notice it, identify any triggers if you can but you can never really know. Be kind to yourself and put one thing on your to do list and then feel successful when that is done and mentally ticked off even if it’s only ‘have a shower.’ Control your controllables - think is this something I can control? If not, then all you can do is control your reactions to it. Breathe and believe.

• Lower your expectations of parenting:

Expect very little and you’ll be pleasantly surprised. Train yourself  by looking for the light in the dark, the positives, the easy quick wins, notice the small things. Catch your child doing something positive, even if it’s only they haven’t argued with each other for 5 minutes or we had 2 mins at the table when everyone was eating (rather than screaming or sad or not eating), or they went to sleep after only 5 stories and 3 handshakes and within 30 mins rather than being awake for next 2 hours. Find three things that went well and try and replicate them the next day. Don’t compare yourselves to the parents in the playground or in the news - comparison is the thief of joy. Always have a plan B - if the event or activity goes wrong then, leaving early or going home is always a good plan. Do what’s best for you and your child. You’ve got this.

• Relish the super small glimmers for yourself:

Positive reframing helps you to think of your usual routine actions into turn them into being a super extravagant treat. This can work wonders for your mental health and general positivity. Going to the toilet all by yourself, or managing a undisturbed 5 min hot shower or appreciating a really hot or really cold drink can suddenly become wonderful luxuries. Then when you do have more of an adult treat like not having to share a chocolate bar, or enjoying a glass of wine or that 10 mins in the shop by yourself can be a super specia upgraded occasion. Thinking that you are lucky can make you be lucky, and feeling grateful and smiling, can sometimes trick your mind into feeling happier. Do something good for yourself - read, eat well, run, walk in nature.

• Reframe the narrative for your child:

Their perception of what’s happening is important and ‘their truth’ but interventions like an ‘I can…’ document that can be added to, explain all the reasonable adjustments that your child has/can do at home and at school to give that shared understanding and positive reinforcement for your child. ‘You were smiling when you were playing the piano/listening to that music/watching that cartoon, you like that activity and it’s fun - that’s so good’. Worries can be timed so they don’t become overwhelming and always there, so you can add them to a ‘worry jar’ and then discuss them at a daily specific calm time for only 10 mins and then when the jar is shut we don’t need to worry about them. Your child will hopefully have more and more time not actively worrying. Emotion naming, emotion coaching and just noticing are all really useful.

• Time poor? Be organised and/or pay for that convenience: 

Minimise the pressure on yourself by removing some of the micro decisions such as what’s for dinner by reminding the family what’s for dinner and it’s written on the wall, or how do I get there by planning your journey in advance so you to try to have alternative routes to not be late for appointments or work. If you can afford it get a cleaner once a fortnight or once a month, or have the food shopping to be delivered, or drive to that place, rather than walk. Meal planning in advance can really reduce stress, get their uniform or clothes ready, and yours, the night before. Make that packed lunch the night before. Buy small lunchbox snack size containers in bulk. Have a few back up water bottle that they can’t chew or lose, or their favourite squishy or toy. 

• Be radically candid, don’t be proud - 

If you need some help, support or action then ask for it. If you don’t ask, you don’t get e.g.

ask the neighbour or extended family to walk the dog, or mow your lawn or can they please support you by taking your bins out on bin day so you only then have to remember to bring theirs and yours in. Ask for support with DIY or childcare even if it is planned months in advance. Ask for time off at work, either a formal flexible working request or negotiate working longer so you can take off the time for that nativity play or sports day. Ask your child’s school or nursery for support. What’s the worst that can happen? They do have the right always to say no but they might say yes, and that frees up your time, and importantly your mental space and job list for something that only you can do. Being kind to yourself and your child and family, might mean you have to be honest about what you need.

• Think of strategies and activities to support your child to regulate:

Notice when they are calm, regulated or seem happier? Can they have a longer bath time (sensory soak) or their fave dinner on a Friday whether it's fast food or something beige again? Also notice when triggers or dysregulation occurs - visual timetables and timers might help with timings, a 5 minute reminder before stopping that activity, support that transition from a particular favourite activity such as screen time to something fun or interactive with you. Build these regulation activities into their day in the evenings/weekends/holidays. Model what we want your child/ren to see or do e.g. “Mmm this water is so nice” - to encourage your child to drink more. “ohhhh I love brushing my teeth”, decide what habits can slide and what is necessary every day/night so you don’t have a battle every night to get in the shower. Predictable routines are important especially around key transitions or flash points like meal times and bed times.

• Reduce events and activities in calendar: 

  
  

 Your child does not need to do all the swimming lessons, and dance, and piano and that after-school club, or go to that party and then soft play at the weekend. Ignore the pressure on parents and shut out the noise. Family time or time alone is really important, valid and should be valued. As per the previous point, routines are key, and that really fun, exciting event may not be best for your child and their dysregulation being out of routine or because they become tired and overwhelmed may then not be worth it for the family. Preparation in advance of a change can really help, however, some children benefit from limited advance notice of a change. See what works best for your child and your family. 

If you need any more specific or general advice then please do get in touch with the team at nkind.org for more information or specialist support.