Apraxia Awareness Month

💙 May is Apraxia Awareness month 💙

This is Emma: my beautiful, energetic, sweet, sassy, very smart, and determined daughter who happens to have Childhood Apraxia of Speech. Apraxia is not a developmental delay; it is a neurological disorder that causes a disconnect planning motor movements needed to produce the correct sounds for speech. Making sounds correctly and consistently is difficult (many times close to impossible) for children with Apraxia.

The speech centers of the brain help plan and coordinate what a child would like to say. These parts of the brain send complex signals to the speech muscles of the face, tongue, lips, and soft palate. Normally, all this signaling works smoothly, and a child can make all the sounds he or she needs.

With childhood apraxia of speech, something in this process goes wrong. The speech muscles seem to work properly, and the child knows what he or she wants to say. But the brain has trouble working with the muscles to create the movements needed for clear speech. There is no quick fix or cure for CAS. Years of intensive speech therapy are needed for speech improvement and intelligibility.

I had never heard of apraxia before it became part of our lives. It has certainly made us appreciate every single little sound that Emma does make (or even just attempt to make). Emma’s apraxia is severe. She has now been in speech therapy for about a year and a half (5 days / week) and has come so far. While she used to babble mama and dada from about 6 to 9 months old and then stopped, she started speech therapy with no words or sounds whatsoever. Over the last year, from time to time she would say mama or dada but always randomly and never when we asked her to (and never directly to Pat or I). She has just started in about the last month or two to consistently say mama and dada whenever we ask her to as well as no (or more often no, no, no). As you may have seen, she also started to occasionally say Emma when asked to!! It took months and months of practice to learn how to drink out of a straw, and Emma is still not able to blow bubbles or stick out her tongue, things that come rather easily to most kids.

Aside from losing Bosco, I have never been more heartbroken than watching Emma really, really try during her speech sessions to make certain simple sounds but just not be able to and get so frustrated. There are so many time she will try to make a sound and it does not come out like she wanted and she will just grab me, pull me close, and hide her head in my chest and get so frustrated and upset. I always just reassure her that she is trying and doing great. Emma understands absolutely everything going on around her and anything you say to her and so desperately wants to talk. Even very simple words are very, very hard and we need to train her mouth how to make them by physically helping move her mouth for / with her. Emma can now make a bunch of different sounds but can’t always put them together to form a word. For example, we’ve been working on “moo” in speech – she can make the mmmmm sound no problem and can say oooh but cannot put the two together to say moo. We have also been working on the word up for a few months now – she can say uuhh but when she tries to make p sound, it comes out mama mama mama.

I want to advocate for Apraxia awareness so that families with similar struggles do not feel alone and so that others might know a little more about our amazing children who so want to be heard. I can’t count how many times I have heard (out of love from well meaning friends and family) that Emma will “speak when she is ready” or that one day she will just start speaking in clear full sentences like every other child. This is not the case for our sweet girl but that is OK! Apraxia is just a small part to Emma’s story and the woman she will become. She is fierce, works SO hard, is independent, tenacious and our girl will do so many amazing things!