Sunday, September 27, 2020

My Child Was Diagnosed, Now What?

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.  


Friday, September 25, 2020

How Do I Advocate for My Child?

How Can I Effectively Advocate For My Neurodiverse Child at School? 

 

If your child seems to be needing additional support at school, do not hesitate to reach out to the support team.  Positive communication between the school and home is one of the greatest predictors of success for children's education, and the earlier the better.  Don't wait for something big to happen and then react, be proactive.  If your child has had struggles in the past, be open and honest about them.  Let the teacher know what has worked well for your child in the past so that the school can be prepared to support the student and set them up for success.  The school support team usually consists of their teacher, the school principal, the resource teacher, and the guidance counsellor.  If your child has an SSP/IEP, or has required in-school support in the past, this team may also include the division's school psychologist and social worker.  These people are usually awesome, so please do not be intimidated by or worried about their involvement unless or until given a reason to be.  

First and foremost, start with the assumption that everyone is doing the best they can with the tools, skills, and resources available to them.  If your child's needs are not being met, you may just need to sit down with the classroom teacher and resource professional and discuss how they can help.  If more involvement is needed, then go ahead and ask for it, then proceed with the assumption that everyone has your child's best interests in mind.  Start with open dialogue and a desire to be collaborative.  Aim to work as a team to do what is best for your child, then check in frequently to ensure the plans are being put into place, and to see how they are going.  Teachers may currently be feeling too overwhelmed, or may not want to "bother" you and ask for ideas, but if you initiate conversation they will likely be more than willing to converse and ask questions.  Most teachers have a desire to help each student flourish and a desire to get to know them better. 

Be patient with your child's school, but do not accept less for your child because there is a pandemic.  Children with disabilities need even greater advocacy during this time, not less.  While the focus is primarily on physical health, as it must be, we cannot lose sight of children's mental health.  Children with disabilities deserve, need, and must be treated as equally valuable and important members of their communities, and this includes their school community.  

If you need help advocating for your child, below is a guideline for getting the process started.  If you are unsure as to the procedure to follow, check your division's website as they may have an organizational chart or concern procedure posted.  We have posted a suggested protocol on our website as well.  
 

When More is Needed 

  1. After meeting with your child's teacher and resource professional, send an email thanking them for meeting with you and summarizing the next steps agreed upon to support your child.  End your email expressing your willingness and desire to help in any way you can and invite them to contact you (and/or your child's co-parent) with any questions.  
  2. If this does not bring about a resolution, and you've tried working with the teacher, next contact your school's principal, in writing.  If you speak on the phone or in person, take notes and follow up with an email summarizing your conversation so that you have documentation of the communication.  Ask for concrete steps that will be taken, as well as timelines, and follow up on these.  
  3. We suggest maintaining a record of communication with school staff and other professionals when advocating for your child.  This is to help parents keep contacts with professionals organized and to visualize the efforts parents are making on behalf of their children.  
  4. If you have a school support team, you may seek their input as well.  As mentioned, this team may include a school psychologist, resource teacher, guidance counsellor, or social worker.  These professionals are there to advocate for and support the students, so please do not hesitate to seek out their help and expertise.  
  5. If at any point in this process you feel you need a support person to attend a meeting with you, that is your right.  It can be intimidating and overwhelming to meet with school teams, so it may be helpful to have someone you trust along for moral support, or even to take notes so that you can review them later once emotions have settled.  
  6. If you have tried working with the teacher and principal and are not satisfied, contact the principal's next-in-charge.  For some divisions this is a Director of Student Services.  This may differ by region, but your school division's website should have a guide for parents for escalating concerns.  If not, they may have an organizational chart outlining the roles and responsibilities of each team member.  
  7. If you are not satisfied, and have tried your best with the principal and Director of Student Services, next contact your division's Assistant Superintendent.  Maintain documentation.  This is not to be combative or confrontational in any way, good documentation will help you stay organized during a stressful time and may be important to reference in the future.  
  8. If you are not satisfied, contact your division's Superintendent.  As you will have been in contact with other divisional senior administration, it is likely they will have already been made aware of your concerns.  
On the Manitoba Education website, they have a formal dispute resolution protocol listed.  This may look slightly different across provinces.  

The Ministry of Education website also has a brochure called Working Together: A Parent's Guide to Formal Dispute Resolution
It has been our experience that many people within the system either don't know this process, or don't guide parents to this information, meaning that parents and caregivers aren't provided the details on what steps to take next if they don't feel heard somewhere along the way.  It is available on the Student Services website  and we have also uploaded a PDF file of the brochure onto our website to help make it more widely available and accessible.  

In our experience, if you are not getting the help you need from your school's senior administration, or if the problem is such that it requires assistance from someone with greater authority, these may be the next steps to take:  
  1. Parents have the right to hire or contact an advocate.  This can be a private advocate the family hires on their child's behalf, or a non-profit organization that can assist.  The Manitoba Advocate also plays a role in advocating for children in the public education system.  They are an independent office, visit their website to learn more about their role in advocating for children and youth.  
  2. If you are not satisfied, you can then file a formal complaint with your division's board of trustees.  Each division has a different board of trustees which should be listed on your school division's website.  School trustees are elected officials whose prime responsibility is to function as a board to set policy regarding the provision of educational services.  
  3. If no resolution can be found at this level, families in our province can contact the Inclusion Support Branch of Manitoba's Department of Education.  
  4. If none of these processes brings about a satisfactory resolution, families can bring their concerns right to the Minister of Education.  A Minister of Education is an elected Member of the Legislative Assembly (MLA) who is then appointed a portfolio based on their qualifications and experience, such as the ministry of education and training.  They are your representative at the Provincial level.  
  5. If you are unsatisfied with both your Division's School Board and the Ministry's response, you can then formally request that the Minister appoint a 3-person committee to review the board's decision.  You may also wish to involve your region's MLA as a local representative in the Legislative.  Elections Canada has a handy online search tool for finding your MLA based on your home or school locations.  
  6. Another option is to contact your local Legal Aid office, or to hire an Education Lawyer.  Hiring a lawyer privately would be a very expensive option.  If you are unable to get assistance and have gotten this far, we strongly recommend hiring a professional advocate before exploring the legal route.  If you've gotten this far, you may also consider changing your child's school or exploring other options for meeting their academic needs.  
You are entitled to apply for a school of choice, either within another division, or outside your school's division altogether.  You are also entitled to homeschool your child if you feel this is in their best interest.  Remember, your child's mental health and psychological well-being are more important than academic achievement.  Students can catch up on missed work, but the psychological impact of being mistreated in school can be much more significant.  

Keep Calm and Advocate On

With all that said, sometimes teachers don't have the time, support, resources, or experience to provide the support needed.  This may not be their fault, they may need more support from their school leadership, from their resource and guidance departments, or from their division.  Education in Manitoba (and in Canada) is sorely under-funded, so resources are always stretched thin.  In fact, teachers may be playing the part of a professional when they ask for your patience, but inside they may be nearly as frustrated as you are.  Most educators wish they had unlimited resources so they could pull out all the stops for every single student in every single class.  

Especially at this time when they are already stressed due to Coronavirus concerns, teachers are overwhelmed and overworked.  Please be compassionate toward yourself, your child, and their school support team.   

When you feel yourself getting heated, save that email in your drafts folder and come back to it after at least 24 hours, or send it to yourself or a close friend first.  Seek advice from an unbiased person you trust, seek support from your co-parent and/or close friends and vent to them first, rather than in an email to the school.  Remember that it is in the best interest of your child to get along with their school, so do your very best to communicate in a calm, respectful, and cooperative manner.  This may not always be easy, so seek support when you need it.  

This process can be incredibly long, stressful, arduous, and taxing.  And while all of these meetings and formal disputes are happening, children are still suffering and not receiving the support they need.  So in the mean time, parents may choose to homeschool, or move their child to a different school that may be better equipped to meet their needs.  

Parents & caregivers:  Find a support network.  Find one now and lean on them.  Whether it be other families who have children with disabilities, trusted neighbours, close friends, family members, whomever.  Don't forget to take care of yourself.  This system was designed for "typical" students and is not set up for those outside the "norm".  There have been small steps toward improvement over the past decade, but progress is very slow and change takes too long, so gather your village and support each other because we are better parents and advocates when we are in a good place ourselves.  Be kind to yourselves and to each other.  

Plan for The Future 

As your child grows older, and as is developmentally appropriate, they will need to develop self-advocacy skills in order to speak up for themselves.  

Developing these skills begins with understanding their own neurodiversity, how it impacts them, what their strengths are, and what specific supports they find helpful.  This way they know what to ask for when they do need help.  

As they mature, our children will need to learn how to advocate for themselves in a respectful yet confident way.  This means learning what their rights are, standing up for them, yet taking personal responsibility where appropriate.  It's a difficult balance that most of us are still working on as adults, but these skills will be very important for our children in their future endeavours.  


Please visit our website for a list of ADHD Resources available in Manitoba.  

If you need assistance advocating for your child, contact us and we can recommend and provide resources or arrange services.  



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