Kiddos with a medically complex history often have many providers that each have a specialty in a different area.  In order for this to work well, there needs to be someone who can pull it all together.  In our program, we have had the privilege to work with another kind of specialist over and over.  The parents.  Every parent is a specialist in their child, and has a wealth of information that is needed to make appropriate medical decisions.  They are also the ones that will be guiding their child into the person that they are going to be.  Without that input, the picture of the child is incomplete.  Parents need a place at the table, but sometimes it’s hard for them to find a seat!  

Parents, it isn’t disrespectful to ask to be a part of medical decisions for your child. We hope that this bill of rights reminds you that you are a member of the team.  Your child needs your voice, not just your ears, hearts and hands!   

If it feels wrong, you should put a stop to it  

If something feels wrong, it is important to identify and discuss that. During our evaluation process, we often have parents that share information about past therapy with the statement of “We know it’s wrong but…”. Unfortunately, parents often feel like they don’t have a say, but it is so important to speak up if something does not feel right. This can be hard for families since it is so important to have the support of your little one’s medical team, but it is important to remember that you are the expert when it comes to your child and family. The transition from being dependent on the medical experts to taking the reigns as the parent is not easy, but it can happen. If skills are going to be sustained and continue to build, it has to feel right for the family.  

You should never be asked to leave your child alone with a therapist  

It is basic best practice from what we see in the literature and what we know about how feeding and attachment are linked for the parent to be present for therapy. Children should not be asked to do hard and scary things without having their caregivers in the room with them. This is especially important when a child is learning to eat since this can be a new and scary experience.   

You should be an active part of all therapies, not an afterthought  

Parents should be always be at the center of the treatment plan. It is impossible to separate out the child and parent relationship when it comes to eating. It is a relationship that must happen together, and when that is taken away or the parent is seen as separate, that is a problem. It is important for the parent to be a part of therapy, express their concerns, and ask questions. Instead of a parent feeling ashamed of their parenting, we want families to feel empowered and confident when making decisions. The therapist is the expert in feeding, but you are the expert in your child. It is so important to have everyone at the family table when making decisions and recommendations.  

You deserve to have all of your questions answered, so ask away  

If you have a question, ask it! Make sure to ask about why a certain treatment approach is used or how do you know that it is effective? Asking therapists questions such as “Can you tell me why we are doing it this way” is not disrespectful, it is important to know. As a therapist, it is our duty to provide evidence-based practice, therefore therapists should be able to share information with you about the long-term impact of the therapy approach.   

No feeding intervention is worth destroying the trust between you and your child  

If it feels like the feeding therapy is impacting the relationship with your child and how you engage with them in areas outside of feeding, it is time to have a discussion. Therapy and tube weaning should feel like something that is in sync with who you are as a parent. There is a lot of research that shows that even a trusting relationship that is trusting in all other ways than feeding can be undermined if the feeding relationship is impacted. This relationship can be healed, but it is a good reason to reconsider moving forward with therapy if it doesn’t feel right.   

This is an overwhelming process and many families or parents feel alone in this process, but remember that you don’t have to do it alone. There are therapists out there that can help provide you support and give you more information on evidence-based approaches for your child. 

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