10 THINGS TO DO AFTER RECEIVING A DIAGNOSIS
By Emily Scherman, Calgary special-needs mom and advocate.
Listen to Emily on the Parlay Podcast, Episode 3: Finding Your Voice.
You can connect with Emily on IG at @ejscherman.
Also here's her list of suggested resources mentioned in the podcast:
Program Unit Funding (PUF) is a government program provided to approved Early Childhood Services (ECS) https://www.alberta.ca/early-childhood-education.aspx
Family Support for Children with Disabilities (FSCD) The FSCD program works with eligible families to provide support and services based on each child and family’s needs.
Inclusion Alberta is a family-based non-profit federation that advocates on behalf of children and adults with developmental disabilities and their families. Their dream is to create meaningful family life and community inclusion for individuals with developmental disabilities. https://www.inclusionalberta.org
Dr. Deborah MacNamara – Child Psychologist - Developmental Science Translated Into Practical Love https://www.Macnamara.ca
Bright and Quirky - Help Your Bright Child Thrive https://www.Brightandquirky.com
The Special Book by Melanie Dimmitt- Antidotes to the obsessions that come with a child’s disability, IG: @the_special_book
Your child has received a diagnosis, now what?
Give yourself the space and room to grieve the diagnosis. Big or small, all diagnoses mean a change for the child as well as the family. Don’t expect yourself to be your regular ‘super-parent’ self. Allow yourself the time to think about how this will affect your child and your family going forward. It's ok to be sad. Sit in the grief for as long as necessary.
Reach Out To Your Community
This could mean your extended family, good friends, other special needs parents, your online community. You will most likely be exhausted from the recent diagnosis so start a text convo, have a phone call or if you have the energy, meet with someone for tea or a walk. Sharing your story can be empowering – fears, hopes, all of it.
Secure A Team To Help
There are provincial programs that can help the financial burden that comes along with a diagnosis. PUF and FSCD are the two most common and can provide funding for parental respite, therapies for the child, therapies for the parents and siblings. Lean on your team to pivot, if needed, to provide additional or more specific treatments based on the diagnosis. If you don’t know where to start, ask the medical professional who gave the diagnosis to provide you some recommendations. If you know any other parents of children with special needs, pick their brains for anything that might help. The special needs community is generally a small, close knit one.
Know That You Are Your Child's Best Bet
Be confident in the fact that you will be able to handle this and you will act in a manner that is best for your child. This is not the easiest parenting journey but you will build immense strength and you will learn to celebrate your child in the most loving ways. Your child deserves the best of you and you will become a team of super-human strength.
Get A Second Opinion
After the diagnosis it doesn’t hurt to get a second opinion. This isn’t to say that your diagnosis will change or go away but it will give you confidence going forward on the journey. Some experts may not like the idea of you getting a second opinion but remember that none of us are here to please the experts. Getting a second opinion can build confidence going forward with a surgery, new treatment or intervention.
Be Willing To Disagree With Experts
If an expert is telling you about a treatment, therapy or medication for your child that you do not feel comfortable with, question them. Ask them why they are suggesting it and if they have any experience or testimonials you could hear about before making the decision on behalf of your child. Our children deserve more than the old “this is how it has always been treated” or “this is the type of funding we always give for x” statements.
Take Some Time For Yourself/Self-Care
This can be one of the most difficult tasks for a parent of a special needs child. Where do you find the time? Taking 5 minutes to have a break, buy yourself a treat, light a candle, do a quick meditation can be very helpful. Sometimes a quick reset is what we need to make it through the rest of the day. If you have the ability to take a longer break, by all means do it! You deserve each and every break you can get. Self-care can increase energy for those very tough days.
Educate those around you about your child’s diagnosis. Most of the time we don’t know much about specific diagnoses until we receive them. Become an ‘armchair expert’ on your child’s diagnosis. Have educational information to email out not only to your family and friends but also to your child’s school. Education is empowering and can give those around our children a new understanding of what to expect.
Advocate for what is best for your child in all areas of their lives. School, childcare and activities are all places you can advocate for your child being able to join and take part in some capacity. Just because they have challenges doesn’t mean they can’t partake. Examples of this are being told, as the parent, that your child will not qualify for an aide either in school or in the home setting. Advocate for it and explain how this would benefit your child and how their experience will be much enriched by having an adult with them. This takes stress off the teacher, parents, childcare workers and most importantly, the child. Another example is registering your child for a “typical” activity and being told the association doesn’t let aides accompany children. Just because it hasn’t been done before doesn’t mean it shouldn’t happen. You can change things not only for your child but for other children in the future.
LISTEN TO YOUR INSTINCTS
Above all, listen to your instincts! If something feels off internally for you as a parent, it probably is. If you think you or your child could benefit from a different therapist, doctor or teacher, request a new one. Don’t worry about hurting people’s feelings, they are professional adults and can deal with it. If you feel that someone doesn’t quite understand your child the way you’d like them to, ask for a one-on-one meeting and share your concerns. This almost always ends in a positive way, with your child receiving the most benefit. Trust your voice and know that you are the expert on your child and you know best what they are thinking and feeling. If your child needs a break from therapy or you feel one type of therapy is benefitting them more at the time, focus on that therapy and return to the others when it works. Always know that you are doing your best for your child. Have confidence in your instincts. Sit with yourself and try to feel instinctively what is best for your child. That, along with the advice of professionals, will give the most wholistic approach to treatment and interventions.