You might have days where it seems as though no matter how confident you are, and how clearly you feel you are expressing yourself, no one is really listening. Though you are sure you are speaking the same language, the people to whom you are speaking to just don’t seem to be on the same page.
Advocating for a child, especially a child with special needs, can be difficult, exhausting, and overwhelming. When do you speak up? What do you say? How can you be sure your message is understood? What can you do? How can you communicate your and your family’s needs?
Here are 6 ways to be a motivated and organized team player when advocating for your special needs child:
Recording the date, time, with whom you met, and what happened during that meeting helps keep your memory of the event fresh. It’s a way to refer back to goals, weight or height, outcomes, and professional opinions. By having this information in one easy-to-access journal, you can be more confident in speaking up for your child.
Before some appointments, my husband and I write down questions or comments we have for the doctor/specialist/therapist. Sometimes when babies are fussy, the wait to see the doctor is long, and the unfolding of the day mean we forget what we wanted to ask when we are finally seeing someone one on one. By writing down the questions beforehand, we are prepared and get the answers we want.
Sometimes, we forget that the person who is giving us feedback, advice, or a diagnosis is part of our child’s team. As a member of the team, the professional should be able to help guide you through the treatment and answer any questions you might have, because it is in everyone’s best interest for your child to succeed. Including them as a member of your team also helps avoid the “us vs them” mentality. Teammates may disagree about plays, but they have the same goal: to win and to succeed.
Speak up if you don’t think the suggested course of action will work. Speak up if you have doubts. Speak up if you don’t think you were heard. If the professional is behaving as though they aren’t on your team, and they don’t seem to have your family’s best interest at heart, that’s when it’s a good time to seek a second opinion. Speak up and ask for a second opinion.
Too often we don’t speak up because we are worried we might look ‘dumb,’ but when you understand the situation, you can make more informed decisions. Ask questions. Ask for clarification.
If you are being told your daughter needs AFOs and you don’t know what AFOs are, how much they will cost, or how often they need to be replaced - ask! This is where the journal comes in handy, because maybe you will think of questions after the appointment. If you do think of questions, write them down. Call the doctor or therapist and tell them you have some questions about what was discussed. Don’t shy away from them because you think it’s “too late.”
What are you looking to gain out of the appointment? Do you want your child to be more included in a specific program? Do you want him to be able to use the washroom independently, or dress themselves without assistance? Be clear about what you want, and ask for help getting to that goal. For example, our son is 2 years old. When he is 4, he will be in full day kindergarten. I think about what I want him to be able to do when he starts school. I want him to know how to hold a pencil and draw lines and circles, to be able to dress himself as independently as possible, to have the ability to communicate with his peer group, and to be toilet trained. Knowing this, I ask his therapists what we need to do NOW to get him to those goals - what are the foundational skills he needs to know in order to hold a pencil crayon correctly (for example)?
Having these expectations set out means that our team members (therapists) know what we are working towards and can create a plan of action to achieve this. Don’t be afraid of goals that seem “out there” - just because the team members have never seen it done doesn’t mean it can’t be done.
Who said you only need to see therapists individually? Ask for team meetings. Have your nurse, PT, OT, SLP, daycare worker, babysitter, teacher, or whoever else is on your team to meet once or twice a year as a group to touch base with each other and provide updates. These meetings allow everyone else to know what the other person is working on, where there might be some overlap, or where one person’s expertise might help the other. Communication among your teammates is important and helps lead to success.
If the meeting or appointment has been a long one, and you aren’t sure you caught everything - or even if the meeting is a short one and you think you have caught everything - do a quick recap of the meeting to be sure. It can be as simple as: “So to be clear, in the next 3 weeks you want us to continue to do X, Y and Z for 10 minutes each morning and 10 minutes before bed, and have a follow up appointment with you to see how he’s progressing?” If you missed a step, or misunderstood some of the information, this will give the doctor/therapist/team member a chance to explain or elaborate.