Top 10 Things To Do After Receiving A Diagnosis 

Your child has received a diagnosis, now what?

10. Grieve – 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.

9. 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.

8. 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.

7. 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.

6. 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.

5. 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.

4. 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.

3. Educate – 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.

2. Advocate – 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.

1.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.

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)

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.

Dr. Deborah MacNamara – Child Psychologist - Developmental Science Translated Into Practical Love

Bright and Quirky - Help Your Bright Child Thrive

The Special Book by Melanie Dimmitt- Antidotes to the obsessions that come with a child’s disability, IG: @the_special_book

20:23 29 Sep 22
To say Smile Therapy has been life changing for our son (and family), is an understatement! Since attending SMILE, we have seen him surpass goals that once felt out of reach. At his Physiotherapy and Occupational Therapy appointments, I know that he is receiving the best care and support possible!They also provided us with a Home Therapy Program, which has allowed us to feel like we are continuing to do everything possible to support our son, even outside of his appointments. I have so much love and gratitude for this program and everyone that is involved in it. I truly do not know what we would do without them!
Nicole MurphyNicole Murphy
18:09 15 Dec 21
We cannot say enough great things about SMILE and everyone of their team members!!Our daughter is the most risk-adverse child there is and the team quickly got her comfortable with being uncomfortable without any distress. Our daughter looked forward to seeing and hugging everyone each morning and afternoon even when knowing hard work was waiting for her.The team was so accommodating with us being from out of town and allowed us to camp out a bit before our long drive back home. We even made some friends in the lunch room before we left for our drive back to Edmonton which set the tone for our long drive.We love SMILE and will be back in the spring!
Jeanette MendezJeanette Mendez
02:58 15 Dec 21
I was advised to check SMILE therapy when they opened in Calgary and this was the best advice we could have received. This place its beautiful for the families and kids, all the walls have beautiful themes that call for inclusion, the equipment is new and amazing, but the Best of Smile is their people. We have worked with PT, OT, speech therapist, and massage therapy. Everyone surpassed my expectations. Everyone is so knowledgeable in their areas, and all loving to my son. We truly found an amazing team that cares for my son and pushes him in the right way. As a parent of a child with special needs, I have learned so much with them, they always hear my concerns, don't hesitate in sharing how to replicate the exercises at home, and make sure I go home knowing what to do.
alisha raialisha rai
22:23 14 Dec 21
SMILE has and continues to provide amazing care for my son. The clinic is clean and well organized and the staff members are super friendly and are always going the extra mile to accommodate our schedules between what feels like a million medical appointments a week. Having a child with special needs is very stressful without a doubt but SMILE has helped to alleviate some of that stress. I love that they always see the potential in my little cerebral palsy warrior. We would be lost without the guidance and support of our SMILE team.
Lauren NewtonLauren Newton
15:56 21 Sep 21
Game changer! We have been going several times per week for the past few months and the difference it has made for my daughter is astounding. The entire staff there is absolutely wonderful, and have helped her make so much progress in many different areas. SMILE has given my daughter so much independence and confidence, and she now gets so excited when she sees the door to the clinic. She has RAN towards it a few times in her walker. If that isn't a huge testament to the staff and program, I don't know what is! Julie (one of the owners) has created the perfect space to help our children thrive, and she has been so great with communicating with our family every step of the way. Therapy can be tough for kiddos, and the whole team has worked so hard to make sure our sessions are both fun and beneficial for her development. She's made so many big and mini milestones since starting at SMILE, and it's worth every penny. And if you need any more convincing... they now offer both paediatric AND parent massage therapy right in the clinic (parent massages can be done while your kiddo is in their own sessions). What could be better than getting yourself a massage to unwind (and get a mini break!) while you know kiddo is in great hands with the SMILE therapists?