Jake's Journey with Apraxia

Spring has sprung and I know many parents are currently evaluating summer and fall speech therapy options. I am going to speak candidly in this series and I hope that my honesty will help you in your own journey with apraxia. These words are for you as parents and SLPs who care about helping these very special children find their voices.

The purpose of this series is to:

1. Educate parents on what to expect out of speech therapy.
2. Educate parents on the treatment of apraxia.
3. Reassure parents that SLPs are not one-size-fits-all.
4. Give SLPs a peek into the mind of a parent whose child has apraxia.
5. Show parents that there are SLPs out there who will respect and value your opinion and also work hard for your child.

Over the course of the 3 years and 3 months that Jake has been in speech therapy, we’ve had five SLPs. If I would have been pleased with #s 1-4, we would never have gotten to #5. It was very difficult to find a speech therapist who was educated in apraxia. I had to do all the research myself, seek out other experienced apraxia mothers, find the best treatments available, and then search for a SLP who was willing to help us.

I truly felt alone in this battle until Jake turned four and we finally found SLP #5.

SLP #1 and #2 both did play speech therapy. Although Jake was only two-years-old, I wish those SLPs would have done more than play with him. I knew then and still know now, that he could have handled more. We could have used Kaufman Cards and hand cues at that age.

I don’t know what this approach would have hurt, even if an apraxia diagnosis couldn’t be given because he wasn’t saying enough words to measure the errors and inconsistencies. Or, when a child is making zero progress, I don’t know why other techniques couldn’t at least be explored.

SLP #1’s job through our state-funded early intervention program, was to primarily teach me how to encourage my then 27-month-old silent son to speak. At the time, I remember thinking to myself …

Why are you talking to me so much in speech sessions? He’s the one who needs help, you’re the expert, spend time with him, not me.

And truly, I was confused, Googling things like – What do speech therapists do in speech therapy? – because I genuinely didn’t know what the typical protocol was. I knew zero about speech therapy at that point in my life and I wish I would have been given more guidance for what to expect in sessions.

But, with all of that said, I really liked SLP #1. I understand now that she was limited with what she could do because she was employed by the government. Looking back, I realize that she did successfully introduce me to the very basics of speech therapy. She taught us basic sign language, gave me literature to read, and encouraged simple communication like “more” and “eat.”

Quite honestly, at that time I was a dramatically different version of myself than I am now. I was a fairly new stay-at-home mom and I wasn’t a natural. I am not too proud to say that I needed help in learning how to play with my child in order to encourage speech.

After a few sessions, I felt like I was doing everything I was supposed to do at home, but still not seeing any results. SLP #1 and I agreed that it was time for Jake and I to move on to a private therapist.

When Jake was 2.5 years old, SLP #2 entered the scene and by this point, I was really starting to question the process of speech therapy.

SLP #2 played with Jake like I played with him at home. She read him books, sang songs, and did cutting and pasting exercises. One of the first nursery rhymes she started with was “Five little speckled frogs, Sat on a great big log, Eating the most delicious bugs…” My child who couldn’t even say mama, just stared silently at her, big smile planted on his face, while she belted out this tune week in and week out.

Once she finally started drilling words, they did not have any rhyme or reason to them. She didn’t work on the same letter or words each week and some of the first words she introduced to him were two-syllable and not simple. This is not how you treat apraxia, or what she viewed as suspected apraxia at that time.

I pressed SLP #2 to make a diagnosis prior to age three, but she would not. Her response, which I will never forget was …

It doesn’t matter if he has x, y, or z, I’m still going to treat him the same way.

When she said this, I remember thinking, If we don’t know what it is, how in the world are we going to fix it? Fear and frustration were quickly setting in as the weeks drug on with SLP #2. I also feel like this speech therapist gave me two pieces of the worst advice I received in this journey.

The first I wrote about in a guest post when I first started blogging …

When we first started this journey, an SLP told me, “You are his mother. You are not his speech therapist. That is my job. Your job is to love and nurture him.” And for a couple of months, I took this advice, breathing a long sigh of relief that teaching him to talk wasn’t my job. 

And the second piece of advice that makes me cringe even still to this day …

He’s not talking because he just can’t. “But”, I can tell he “wants” to talk. He. Just. Can’t.

Can’t … what a discouraging word. “Can’t” is not a word that will motivate a mama. Words that will drive a mother are – Work hard and you will beat this d*#$ thing! Can Not is one step away from Will Not. Will Not means never hearing your child speak. And these words will paralyze all parties involved – SLP, parent, and student.

Jake did speech therapy with SLP #2 from March through May of 2011 at my older son’s elementary school. Her office was across town – nearly an hour drive one way – and when school was out, she did not encourage me to do speech therapy over the summer. She sent me home that summer with two folders of lessons – Three Little Bears and Five Speckled Frogs.

Why didn’t she say – I think it could be apraxia, but I’m not sure. If it is apraxia, your child will need frequent, repetitive, specialized therapy. It is going to take your son a tremendous amount of practice to say even the simplest words. You need to get help asap.

But, no, she didn’t say these words and I went home and enrolled myself in summer school with Google, majoring in apraxia of speech. I would spend the next few months educating myself and playing with my boy each and every day.

Jake made zero progress that summer.

Once school was back in and a few days before Jake’s third birthday in September, SLP #2 officially diagnosed him with apraxia. At that point, I had some education under my belt and knew I must find a better fit for us as soon as possible.

To be continued … Stay tuned for Part 2 of 3 in the next few days.