Part 2: Sharing Parent Voices

Author: Karen Copeland

Please read Part 1 here

Our panel started with each parent introducing themselves and providing a list of some of the services they have accessed over the years.

Ministry of Child and Family Development (MCFD), Child and Youth Mental Health (CYMH), Justice, Sunnyhill, Private Therapy, School, Health, Children and Youth with Special Needs (CYSN), Aborignal CYMH, Adolescent Day Treatment Program (ADTP), Private Psychologist/Counsellor, BC Children’s Hospital Inpatient Program, Behavior Consultant, Independent Distributed Learning, Addictions, Community Living BC.

This, of course, is not an exhaustive list. Each parent had a list of many, many services they had accessed and were simply asked to share three to five of them.

Question 1: What are parents generally expecting/fearing/hoping for when they realize they will be interacting with professionals around their child’s care?

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  • I am hoping for answers, to find out what direction to go in next. I have a fear I will be told there will be no more options for us
  • I appreciate when a professional will dig deeper, not hearing “well, he’s complex” without any further exploration. See my child as an individual, he is not like other children who may have a similar diagnosis.
  • I fear that there won’t be understanding for my child, I want to be able to move in a forward direction.
  • I fear judgement. Our job as a parent is to teach our children to be the best they can be.
  • I remember the time when I was terrified to get my child’s diagnosis. But this was responded to in a very helpful way. Instead of giving me a list of services I needed to contact, they did it for me, coordinating 5 services for me. This was so helpful.

Question 2: Considering the many services you’ve accessed over the years…what type of program or service has been most helpful for you as a parent (education, counselling, support group, etc)? Why has this been most helpful?

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  • Support groups have been the most helpful. Connecting with people who have gone through the same thing as me. I have learned if I don’t take care of myself, I can’t take care of my son. This impacts my entire life. I see more support groups now than when I started this journey 20 years ago. Education was helpful as well.
  • The first thing I needed was the support group. [Connecting with others] breaks down barriers so I can move on to the next step of what I need to do.
  • With education, we need this to be a consistent message. [referencing Gordon Neufeld, Gabor Mate] my wish is for this movement [attachment] to continue forward. Be mindful that if your professional practice does not match the practice we are using in our family, this creates challenges in the relationship.
  • Recommendation to professionals: continue to educate yourself. Be open to new theories, challenge yourself to learn new things and move forward
  • Recommendation to professionals: Be open to sharing your approach right at the outset, so the parent can make an informed decision about whether or not it will be a good fit for their family
  • Consider the costs of private therapies – each type of professional therapy (counselling, speech therapy, occupational therapy, behavior therapy) cost more than $120/hour, and may be accessed multiple times. If there is funding available, it often does not cover entire cost of services. The highest cost of this is having to coordinate and manage services, which means I am unable to work. I have had to leave my employment and we have become a single income family.
  • The Adolescent Day Treatment Program (ADTP) was the most helpful service for my son and for myself. They have wrap around care – and they believe in supporting families too.

Question 3: What is one thing you would like professionals to know about what it’s like for a parent to attend a meeting regarding the support of their child? (care team meeting; introduction to social worker; psychiatrist; school based meeting, etc.)

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  • It is scary as hell.  A positive is when the people in the meeting showed empathy and compassion. It took a number of meetings for me to start to feel safe.
  • We tell our stories so many times. Remember that we hold the whole story. Every new meeting, I think “ahhh. here we go again”. Sometimes I am tired of sharing my story.
  • We often think long and hard about these appointments. Sometimes we have been waiting for months for the appointment to happen. This waiting might not be acknowledged by the professional, instead we are looked at as “the next appointment on my schedule”. A verbal acknowledgement or even curiousity about how long we have been waiting would be helpful.
  • My fear – my son has behavioral issues and I feel I am going to be judged for being a poor parent. His behavior is not a direct result of my parenting. His behavior is influenced by the years of frustrations he has experienced.
  • We know our child is not perfect. I know everyone thinks that we think our child can do nothing wrong, because we try to talk about the good things, but please understand, we see the good, the bad and the ugly in our child. Remember that you are only seeing the hard stuff. So when we talk about their good qualities, we are trying to ask you to look at our child’s potential.
  • We appreciate when you give us strategies, things we can do to help our child. We appreciate every little thing that you do, every time you step outside the box and get creative. In fact, sometimes when I am lying in bed at night trying to sleep, I wonder if you know how much we appreciate you.
  • A lot of things can happen on the way to an appointment. It is often not as simple as just getting in the car and driving there. There can be a number of things that happen [because of anxiety, transitions]. What helps and is appreciated is when we arrive at the appointment and there is patience and understanding. So when the receptionist interacts in a positive way with my child when we arrive, instead of responding negatively to the behavior she is seeing, that makes a big difference.

Question from the floor: What kinds of services have you accessed for the rest of your family?

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  • Counsellor, creating a family support network outside of the home was really important so that we could have a break.
  • My other daughter attends the sibshops through the Child Development Centre. She also comes along to Special Olympics events and connects with other siblings there.
  • In my family, there has been a lot of anger and frustration. I’m one of the only ones that has sought out support or help. Even though my other family members may not be seeking out support, they see that I am. I am modelling what is working for me.
  • I sat down and counted one day. I have attended 72 parenting courses over the years. I have invested considerable amounts of time in navigating systems, supporting my child in engaging in therapies, advocating for him to get the support he needs. My marriage was impacted by this.
  • The most important service we have accessed is respite. We fought for years to try and get respite so my husband and I could actually have some time together and stay connected to each other so we can continue to support our son. [parent described more specific details of their family situation]. What it took was a professional coming on board, taking the time to understand our situation and advocating for our family to receive this support.
  • We need to be supporting the families who still have the kids in their home. These are the families we need to support, invest in them to keep them together so they don’t end up breaking down and having to enter foster care.

Question Four: When you hear the term “collaborating with professionals”, what comes to mind? What would you hope for this to look like?

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  • Collaboration means speaking to us as equals, working together. Collaboration has always resulted in positive things happening for our family.
  • Being open and knowing everyone involved. There are often a large number of professionals involved and each of them may be working on different things. Taking the time to share with each other how they are supporting my child is important.
  • We have five doctors that work with our family. Our sleep doctor and our psychiatrist got together in the same room and started talking about the same child. In their conversation, they discovered a particular medication was not working. Now these two doctors are actually communicating with each other, instead of relying on me to provide that communication.
  • There can be a defeatist attitude in certain systems, for example the justice system. You are not seen as an individual in this system, you are seen for your “record”. I would hope for more diversion services, but it is hard when the whole person is not recognized.
  • Comment from Laurie: How we perceive the person determines how we collaborate and respond in our practice. Can there be collaboration if we don’t see the individual as a whole person?

Question Five: Sometimes it looks like parents are not involved or are disengaged from supporting their child or youth. This might look like a lack of follow through on strategies or communication. What might be preventing a parent from being engaged in the way a professional might expect? And how can a professional assist the parent in becoming engaged?

  • There is a lot of exhaustion. Sometimes we are at the end of our rope. We are not only supporting our child who has challenges, but we are also trying to take care of our other children, and our family. Sometimes we just need baby steps. It may be helpful to check in and see how the family is doing before assigning homework for the week. Maybe that homework becomes self-care, based on how the parent says they are doing.

From Karen: I did not mention this in the session yesterday as we ran out of time, but I wanted to reflect it here in this blog post. At times, it may appear like I am not involved or I am disengaged, and this actually is because I don’t really understand what my role is, or what it is that the professional is wanting me to do. While it might be clear or understood by the professional, sometimes it is assumed we understand the expectations when in fact they have not really been explained to us. Communication is key.

Read Part 3: Panel and Participant Reflections


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