My child has been diagnosed with ADHD. Now what?

This is the first in the MyCareSpace series titled "NOW WHAT?" which is aimed at helping people who have just recevied a diagnosis and are unsure of what to do next.

The following article written for MyCareSpace by Jillian Shapiro (MPsych - Educational & Developmental) is intended to be a be a practical, what-to-do-now reference for families of children who have just received a diagnosis of ADHD.  It can be a whirlwind of a time and our hope is that this brings a sense of order and purpose to the weeks that follow.

1. Hug your child. Play with them. Rediscover all the things you love about them.  The diagnosis process most likely made you focus on what your child can’t do. You may be feeling quite anxious and frustrated by all the challenges that you are noticing, or even some shame over not managing them that well.

   Your child is probably experiencing a significant amount of conflict with adults and children due to their difficulties self-regulating their behaviour, and they may be feeling frustrated as well.

   To borrow a term from the wonderful book The Self-Driven Child [1], your first priority is to become their ‘safe base’ again, where they feel unconditionally loved and understood. So set aside time to play. Discover all the wonderful things that make him or her an awesome kid. Things will be okay.
    

2.  Get to know ADHD. You will need to become the expert in understanding how ADHD affects behaviour. Once you understand ADHD generally, you will be able to shift your gaze back to your child and think about what his challenges are, understand the role ADHD plays, and choose strategies that make sense.

   Be aware that ADHD has a genetic component; you may come to realise that one or both parents struggles with ADHD and also needs some understanding and support. I recommend reading/watching the following:

   • Taking Charge of ADHD: The Complete, Authoritative Guide for Parents by Russell Barkley PhD. Dr Barkley also makes his lectures and parents talks available online for free.
      
   • The documentary ADHD: Not just for kids has excellent explanations about how ADHD affects behaviour and, importantly, how it may change as your child gets older.
      
   • How to ADHD You Tube channel is presented by a young woman with ADHD. Many have found her perspective to be helpful in understanding the experience through their loved ones’ eyes.
      
3. Discuss – and re-discuss - your treatment options with your paediatrician. It’s critical that you know what the science says is helpful – and not helpful – when it comes to supporting your child. There are many well-intentioned family members, friends, teachers, and ‘experts’ out there who claim that a certain computer program, diet or supplement is the missing piece to the puzzle. It is tempting to want to try anything to make things better. Instead, take note of all advice and bring it to your next meeting with your paediatrician to discuss how these options may support your child.

   Make informed choices as a team. Stick to regular follow up appointments so she can help you monitor progress and work out when a change in strategy may be needed.
    

4. Instead of implementing all general ‘ADHD strategies’ at once, start by building a list of situations and challenges that your child needs help with. Prioritise.  It is almost impossible to put all strategies in place at once. If you provide your child’s teacher with a long list of ‘what to do for ADHD’, despite best intentions, very little will be implemented consistently over the long term.

   Setting specific goals and priorities helps everyone focus their efforts, and helps you monitor whether that situation is improving so you can develop a tool box of approaches to use as you move on to the next challenge on the list.

   Importantly, look at specific situations rather than just treating the ADHD. This will reveal whether something in an environment needs to change to make it easier for a child with ADHD to meet expectations, and/or whether there are other unidentified challenges that need support (for example, learning difficulties, anxiety, and lagging social skills).

   To do this:

   • Sit down with your partner at home to make a list of what is particularly challenging for your child. Think about whether the severity of the problem changes with time of day, who is present, and so on. Think about what strategies you have tried so far and whether it has helped.
      
   • Meet with your child’s teacher and, if appropriate, the learning support teacher and/or school psychologist, to explain the diagnosis. Ask them to help you understand:
     
     • What are the specific school challenges your child faces?
     • What strategies have been tried so far and which have helped (if any)?
     • Do they have concerns about learning, friendships and behaviour at recess?
     • Do they see your child suffer from anxiety or low self-esteem?
     • How are their organisation skills?
        

   Aim to understand what you can reasonably expect from the school in terms of support intensity and consistency. Build a partnership and plan for regular review meetings to measure progress and refocus strategies as needed.
    

5. Find your anchor - seek support from a psychologist to help case manage and provide evidence-based support for the family, school and child. An experienced psychologist will look at the priorities you and the school have listed, help you put together the appropriate support strategies, and monitor their effectiveness. 

   I would expect to have more frequent sessions in the short term and then would schedule regular check-ins (ie on a term-basis) to monitor progress over time (see point 7 below). Let them be your ‘anchor’ that coordinates support across settings and professionals so that you do not have to be the messenger or juggle competing recommendations. This will keep you on course and, importantly, will take some stress off your plate. Talk to your psychologist about how he can help.
    

6. Help your child learn to advocate for themselves. It is important that your child understands how ADHD affects their day-to-day challenges and that they know how to get help when needed. This helps protect against anxiety and helplessness, promotes problem solving and sets the stage for self-advocacy as they grow older and more independent.

   Try the following approach:

   • Instead of describing ADHD as a stand-alone concept, describe it as a problem that that can appear in many different situations. Explain that ADHD is a different way of thinking that can lead to incredibly creative and exciting ideas, but that can also make it hard to meet expectations in other settings.
      
   • Let them know that you are a team and that you will work together to figure out how to make the trickier situations a bit easier.  
      
   • As often as possible, invite your child to be part of the problem solving process at home and school. Give them a voice in explaining what is difficult for them and let them be part of the idea-generating process of strategies to overcome these difficulties. I highly recommend Dr Ross Greene’s Collaborative and Proactive Solutions approach for these purposes.
      
   • Select strategies that your child can take on with increasing independence (e.g. checklists, technology, a script for asking a teacher for types of help) so they feel in control and competent. 
      
7. Develop a long-term support plan.  Once you develop your own ADHD expertise and work out what strategies help your child at home and school, things may start to settle.

   It is important to realise that ADHD shows up in different ways as a child gets older and demands change. Aim to check-in with your school team each term to monitor your child’s progress and catch emerging challenges early. 

   Similarly, keep regular appointments with your paediatrician and psychologist so you can update them on any changes at home and school and enlist their support.

Another useful article by MyCareSpace on ADHD Was "ADHD:What, where, how and who?" for parents who may not yet know if their child has ADHD and don't even know where to start looking for help

Jillian Shapiro is a Registered Psychologist with a Masters in Educational & Developmental psychology. She has previously supported families of children with ADHD through private practice in Sydney NSW and currently works in the primary school setting as a school psychologist where, among other things, she coordinates support for students with ADHD. She believes that a child is more than their diagnosis and that everyone deserves to understand themselves better and know how to ask for the help they need. She is the mother of two children and knows, without a doubt, that everyone is doing the very best they can.