My Child Was Just Diagnosed As Neurodiverse... Now What Do I Do?
First, take some time to digest and process this news.
Breathe. Call a friend. Have a glass of wine. Go for a jog. Whatever your self-care is, do that first.
Ok, now, let me tell you something about your child's diagnosis that you may not realize: This is a good thing. Seriously.
Your child is exactly the same person they were before they received their diagnosis, it changes nothing about who they are. They already knew they were different, and so did you, otherwise you wouldn't have pursued the assessment. This diagnosis can provide some answers, understanding, and insight.
What a diagnosis can also do is open doors to resources and supports that a child may need to be on a level playing field with their peers. Once given these appropriate accommodations, both you and your child may begin to see what they are capable of. This is so important because this is when they start to see their own strengths. Many neurodiverse children struggle with low self-esteem because of all of the corrections and criticism they receive, so opportunities for them to shine are imperative.
This new information provides an opportunity for adults in the child's life to educate themselves so they can better understand the child's unique needs, challenges, and strengths. Seek evidence-based information on your child's neurodivergence and learn about how to best support them. We have a blog post with book and podcast recommendations if you're looking for a good place to start. There are also online communities of parents of differently wired children where you may find other parents and families with similar experiences.
What Do I Tell My Child?
A lot of parents wonder if they should even tell their child about their diagnosis, especially if they are quite young. While each family will have to make their own decision based on what they think is best for their child, our advice is usually: yes. Once you've had an opportunity to process the information, tell your child. Chances are they already feel different and don't understand why. This could help put things into perspective for them. Many children blame themselves for being different, especially if they have been getting into trouble at school, at home, or in social situations. It's important for neurodiverse children to understand they are not less than anyone else, it is not their fault that they've been struggling, they were simply born with a brain that works differently from many others.
The good news is now that we know more about our differences, we can develop strategies to let the strengths shine through. Remember to explain that our differences come with both challenges and gifts; there will be both pros and cons to having a different brain. ADHD2e also has a blog post outlining some of the other ways in which getting a diagnosis can be helpful.
If you're not sure how to explain the diagnosis to your child, seek the assistance of a professional. The professional who did the assessment may be able to help you with finding age- and developmentally-appropriate ways to explain their findings with your child.
What Happens Next?
Once you've had time to sort through this information as a family, the next step is likely to inform your school. If a school psychologist did the assessment, they can help provide information and recommendations to the school team. If your child has been struggling at school, this is a good time for the school team to outline those specific struggles and how they will support and accommodate your child and meet their needs. This should be a collaborative process with input from the classroom teacher, the resource teacher, the school psychologist, and the parents. Depending on the student's age and comfort level, they may meet separately with the parent and teacher and/or the resource teacher, so that the child's experiences and wishes can be heard. If not, the parent can discuss the child's goals at home and share them with the school team on their behalf. Whatever way it happens, it is very important to give the student a voice and allow them to have some input into their support planning.
Depending on the level of support and accommodations needed, the school team may develop an IEP/SSP for the student. This is a very good idea because it provides documentation outlining the accommodations and supports agreed upon and should outline S.M.A.R.T. goals for the student. The teams should meet regularly (usually once a month at first, and then less frequently as the student requires less support) to discuss the student's progress and make changes to the SSP as needed. An SSP is a "living document", which means it changes along with the student as their needs and goals change.
We recommend co-parents attend SSP meetings together if possible, or that a caregiver bring a support person along. These meetings can be intimidating and overwhelming, so a support person can help take notes and provide moral support.
What Else Can Parents Do?
Depending on the child's diagnosis and needs, there may be other interventions to assist. Some of these may be:
- Occupational Therapy (OT)
- Sensory Supports (such as fidget/sensory toys)
- Medication and/or paediatric oversight if appropriate
A note on professional services:
ADHD 2e (and many experts) strongly recommends seeking out child-centred services that focus on:
- Highlighting and building on your child's strengths (strengths-based supports)
- Helping you, your family, and your child see, appreciate, and foster these strengths
- Clinicians/professionals who support neurodiverse children to love and accept themselves for who they are and give them the tools to self-advocate
- Avoid professionals who try to "fix" or "cure" a child's neurodiversity, or try to "train" humans to "act normal"
- Professionals who help you and your child develop skills and strategies for managing the challenges that we can encounter due to neurodiversity
- Important: These skills & tools should be those that make the child's life easier, not others'. Avoid professionals who encourage masking or forcing the child to adapt to neurotypical expectations
If your child sees a GP and does not yet have a paediatrician, we recommend getting a referral. Here in Manitoba paediatricians are hard to come by, but if you have the option, ask your GP to send in a referral. In Manitoba you can also register for the Find-A-Doctor service if you do not have one. There are also a number of community organizations with a variety of services, depending on your child's needs. The psychologist who did the assessment and/or your division's social worker should be able to provide some resources for you, and many such services can be found online. ADHD 2e has also compiled a number of local and online resources on our website.
The next two most important things that we can do for our children are these:Educate yourselves, your family, and your child's school. You know your child best, and now you are getting to know them even better. This will strengthen your relationship.
Love your child unconditionally, show them with both words and actions that you love and accept them for exactly who they are. Allow them to be their authentic selves and show them you appreciate all of who they are. We are so lucky to have these incredible, unique individuals in our lives. They will teach us a lot. We will learn a lot. What we want children to learn is that they are loved, understood, and accepted. Nothing is more important than a sense of security and belonging.
That is not to say that this journey is easy. We all experience daily challenges and times when we really don't appreciate our child's behaviour. There are extreme highs and lows. Be compassionate with your child and with yourself. Seek out your community, a support network, and take care of each other.
Seeking a Diagnosis?
If you suspect your child may have ADHD, but haven't begun the process of seeking an assessment and possible diagnosis, ADHD 2e Pro has created a page outlining some of the options available for next steps you can take.
Resources
Please visit our website for a list of ADHD resources available in Manitoba, as well as online resources.
If you need further assistance advocating for or supporting your child, please do not hesitate to contact us. We are here to help.
