The 5 ways to improve relationships with parents and increase carry over at home.
January 25, 2020
As professionals we speak all the time about “parent training”, “parent buy-in” and “getting the parents on board”. Yet, we often feel like there is a disconnect between parents and the professionals that work with their children. I spent a lot of time considering this idea myself and spoke with other special needs parents about this topic. This article contains a list of the 5 main points to consider when talking with parents of children with unique needs as well as a transparent explanation of each.
It is always important to remember all communication experiences we have in life includes the perspective of each individual. This list is not meant to criticize anyone but is being presented as an opportunity for growth. This is also by no means an exhausted list, but some main concepts that are common experiences of parents of children with more complex needs. I am just asking you to consider these perspectives and the language used when you are working with parents, it can make a world of difference!
1. Be compassionate. Be empathetic.
Understand that we are doing the very best we can, often not taking care of ourselves first because it usually isn't high enough on the “to-do list”. However, we are strong and do not want pity either. One of the most well-meaning but WORST things you can say to a special needs parent is: “Wow! I don’t know how you do it..” The BEST thing to is simply, provide them with a compliment. Maybe it is their hair, something they are wearing or even their demeanor AND ask how we are doing in a sincere way. Ask if there is anything that can be done to support the parent and the family that is within your scope of practice.
Keep in mind that special needs parents, especially those with children with moderate to severe disabilities often have to handle a whole host of medical concerns for their child as well. We see a lot of professionals that all provide us with their own important list of things that we need to do at home.
But I also want to say - do not discount the parents of those with children that have differences that are not so visible. Those children that we all know skate along the line of standardized assessments that need more help than they often get. These parents are struggling trying to help their children at home because they are not receiving the services they feel their child needs. However, they keep getting dismissed because they are not “severe enough”. It is the parents that watch these children cry, scream or sometimes they have more severe behaviors because of their frustration of not being understood.
If we want there to be a bridge between school/therapy and home, WE need to be the ones to begin building it.
2. See us as more than just “Mom” or “Dad”
We can offer all the information and training in the world.. But as a parent… I will say, if I feel like I am being talked AT and not spoken TO, I am not going to receive the information being provided. The most important thing that any professional can do is truly see the parent as an individual, just like the child. Even if a parent doesn’t have a degree in a related field, there is a very good chance that the parents have self-educated themselves to the point they may be able to pass a licensure tests for such positions.
I recently learned that some parents do not like being referenced as “mom” or “dad” by professionals that work with their child. (Admittedly this is one, I am guilty on!! I am trying to not do this so much anymore!) I have never really minded this but when I thought about it, I can understand this perspective. Like many parents, we have poured our entire self into our children. Special needs parents also feel secluded or excluded from society. We feel like we have lost our identity. Being addressed in this way can make individuals feel less as soon as they sit down at the table and someone says “Hi mom!” Especially when everyone else at the table is referenced by name. Mr. Mrs. Dr. etc… Consider asking the parents of your student or client how they would like to be addressed. Also, talk to them about something other than their child. Maybe about a current event or something you know they or their family enjoy. I know IEP meetings and evaluations are for a set amount of time and there is a lot of information to be discussed, but taking a few minutes to talk to the parent, connecting with them. Allowing them to have some adult conversation could go a very long way when the more difficult topics begin. It also may be their only opportunity to have that type of conversation for the day.
3. If anyone is aware of what our child cannot do - it is us.
We do not want to here “Well they wont, or they can’t.. Or worst yet “Well, your child has (enter diagnosis) we know he/she can’t___”. I know MANY parents that have experienced this scenario. This is honestly not at all professional and should never be said. It is very important for us to hear what our child CAN do and how they have grown. Instead of saying they can’t do something - why not say “They are not yet able to…..” or “we are going to work on….. “. The language we use to communicate to one another is so very important.
Since I became an SLP, I feel like I understand less and less what a “textbook case” is… I read the intake form, I take note of the characteristics the child is exhibiting and also any diagnosis. These things help guide my sessions but I am not going to determine if a child can or cannot do something based on their diagnosis. Let us Presume Competence!
4. Believe us when we report what our child will do in the comfort of their own home.
It is definitely a trigger for me when I hear another professional doubting or discounting a parent’s perspective. We discuss all the time about how children behave differently in different environments. We also want positive skills to generalize to all environments right? Instead of doubting parent reports use this as an opportunity to grow your relationship with the parents. Maybe try asking them: How was the task accomplished? What they may have said or done to help the child achieve this task? Even ask for a video to have for modeling to transition the task to the school or therapy environment. Basically - reverse what is that we often do when we request for the parents to work on an activity at home. If this concept was applied in this manner, the parents will definitely feel more like they are part of the team instead of an outsider.
5. I know this concept has gained a lot more understanding, as mental health continues to gain acceptance but… as a community, I think most would agree that what we experience is repetitive or chronic trauma.
The initial diagnosis is only the beginning. It is more common than not for the list of secondary diagnosis to follow and for life as we knew it to disappear, along with people we never thought we would lose. Life changes for us in ways we have no control over. We live life under an amount of stress that cannot be understood by anyone other than another parent with a similar situation or a caregiver. Because that is what we are in addition to being parents. Think of everything you do to take care of yourself. I mean - EVERYTHING… I do those things for myself as well as my daughter.
Every missed milestone, preparing for the IFSP, IEP and ISP meetings, the doctors appointments, the therapy appointments, and the paperwork! To the other professional/parents with special needs children out there! A virtual high-five to you for getting it done, because you know what I am talking about!!! all of this is daunting.
Now, let us consider the physical role of the parent in day to day life like going to the grocery store or possibly holidays, family trips, or large gatherings… all of these things can cause a change in routine or experience that triggers the child to have a meltdown or become overstimulated. The child cannot always explain what they are feeling or why they are acting the way they are, even if they are verbal,. This leaves the parents also feeling stressed and scrambling to figure out what is causing the issue and how to make it stop, especially in public! Because there is ALWAYS that one individual that has to say something to you in that moment like: “Can’t you control your child?”, “What kind of mother are you?,” “You need to leave, can’t you see you are disrupting everyone else here?” Sometimes just walking back into these locations can sometimes trigger anxiety for the parents and they are cringing the whole time, hoping the episode does not repeat itself. Yes, professionals sometimes see these behaviors as well, but you are most often in a controlled learning environment for 6-7 hours. It is a totally different experience for parents in natural settings and in public being shamed during a difficult moment.
I hope everyone found this helpful! Please contact me with any thoughts or questions on this topic! I would love to hear from you!