As a parent, your job is to make sure that your child is healthy and meeting developmental milestones. When we think of developmental milestones, we usually think of rolling over, sitting, standing, walking, and talking. You probably noticed that something was missing, but you couldn’t put your finger on it. Overby, Caspari, and Shriberg (2019) identified some specific delays in sound development that were often found in children later diagnosed with apraxia. This may have included things like limited vocalizations during the first 2 years (the quiet babies), no or few consonant sounds (for example, m, d, b, n) before 12 months, fewer than 3 different consonants between 8 and 16 months, or fewer than 5 different consonants between 17 and 24 months. You may have noticed more lip sounds (m, b, p) than back sounds (k, g), and few hissing sounds (f, s, sh), with few pairings of consonants and vowels (ma, da). Or you may have been aware that your child was much harder to understand, or much more frustrated, than other children at the same age. You may have even talked to your pediatrician, a few times, about your concerns and were told to “wait and see”. The fact that you are here is proof that you are taking on the most important role when raising a child with apraxia, the role of the advocate.
You’ve done one of the hardest parts of being the advocate; you’ve had the assessment done and have a diagnosis, or concerns, of childhood apraxia of speech (CAS). You are possibly asking yourself, “Is my job done? Do I hand my child over to this random speech-language pathologist and let them figure it out?” The answer is, “No.” Your job has just begun! This can be overwhelming; the following information is here to help you know what to expect and how to continue to advocate for and support your child.
Most importantly, you now get to be the person making sure that your child is getting the services needed and that speech is progressing as it should. You are your child’s voice and you have something that any professional working with your child doesn’t have, that “parent gut”. This is that feeling that happens when you know something is, or isn’t, right. Trust in that and follow it for the rest of this journey.
Your SLP should be including you in the therapy and/or providing you with specific homework. You can also be involved by asking about what the therapist is focusing on, and why. You will now be on a team, with the SLP being your coach/leader. Ask them all of the questions that pop into your head. While therapy should be fun and involve aspects of play, you want to make sure that motor learning principles are being followed. There should be times when your speech language pathologist (SLP) will have your child say a word over and over, giving hints and maybe even touching your child’s face, to make it sound right. Your SLP shouldn’t be working on one sound at a time; entire words should be practiced. Review the articles about “Principles of Motor Learning” to learn more about what therapy should look like. If you see that motor learning principles might not be being used, talk to your SLP.
Your child may receive therapy anywhere from one to five times per week. While this will seem like a lot, it is not enough. The real work gets done at home. The best therapy process happens when you are a member of the therapy session and can carry over the same processes at home. Sometimes this is difficult to do for a variety of reasons; work with your SLP to find home carryover strategies that will work for everyone. For example, you could ask your therapist to use one session every 4-8 weeks to coach you directly on what to do at home. Practice it with your SLP. It feels funny and uncomfortable at first, but the best way for your child’s speech to improve is for you to be applying what the SLP is teaching, in your home! Think of it as being your SLP’s assistant. Your SLP will teach you how to coach your child.
Your child may require an individualized education plan (IEP) in school. This is common for any child with a speech sound disorder. The IEP is basically a contract between you and the school district, determining what the school district will do to support your child in school. It should be focused on education. The SLP assigned to your child’s school may not have experience working with children with motor speech disorders. A school SLP has to know a little about everything and often is not a specialist in any specific disorder. Become your child’s advocate by providing your SLP with resources (the Apraxia Kids website). Respectfully ask the SLPs questions about the plan and how you can work with your child at home. Because therapy happens during the school day, it is rare for a parent to sit in on every session. Establish a form of consistent communication with the SLP so that you can receive the guidance and homework you need to work with your child at home. If you also have a private SLP, ask them to collaborate and work with the school based SLP!
Join the Apraxia Kids Facebook group. This is a great resource. The Facebook group is a community of people who are impacted by apraxia. It includes parents, grandparents, other family members, and SLPs who work with children with apraxia. You can connect with others who have similar life experiences as you, as well as get input from the SLPs specializing in apraxia.
In summary, your role is to be the advocate for your child. Create a team that will be cheering for your Apraxia Star during this journey. There will be successes and setbacks, but keep motivating and keep pushing. Find a community that supports you and celebrate every success (including the first time your child talks back or says a word he probably shouldn’t say)!
By Aubrie Hagopian, M.A., CCC-SLP