EPISODE 7: SO WHY NOT… GET A SECOND (OR SIXTH) OPINION?

Hello!  It’s just me, Leigh Anna, today.  I do have a little special appearance later but for the most part just me talking today.  Welcome to episode 7:  So why not… get a second (or sixth) opinion?  In honor of Apraxia Awareness month this month in May when this is set to go live and even later this week, May 14, is Apraxia Awareness Day, I wanted to talk about how apraxia of speech has affected our family.  I learned a lot about apraxia but I am not a speech therapist or a speech language pathologist.  If you are, I’m sorry.  You’re probably going to cringe most of the time as I relay our story but I really wanted to share it, nonetheless.

Our oldest daughter, Izzy, is now six years old.  While I was pregnant with her I had a pretty typical uncomplicated pregnancy and delivery; nothing too noteworthy.  After she was born, she developed pretty typically also.  She met all her monthly little milestones that we would talk about with the pediatrician.  Around six months or so, one night after I’d gotten home from work lat at night, she said “Mama” over and over and over.  I just enjoyed the moment.  I didn’t even take a video or record it in any way.  I assumed that it would have continued but that was the one and only time she ever did as a baby.  She never said anything else.  She would kind of babble pretty typically the first few months and coo and kind of screech and scream.  She would get really excited about seeing her daddy.  But she really never talked.  So at her nine month pediatrician appointment, she still wasn’t talking.  We were just reassured by the pediatrician that this is not something to worry about at this point that some kids just talk a little bit later.  Closer to a year there should be an explosion of language.  Again at her annual visit, her one year pediatrician appointment, he said, “Let’s wait another six months and we’ll keep an eye on it.”  She met all of her other milestones but she never crawled.  She pretty much went from about ten months of pulling up and standing to taking little steps to walking right at a year but she never crawled.

Then at her 18 month appointment—this was about March; she’s a September baby—the doctor said, “Let’s give it a couple more months and then if she’s still not talking by the summer, we’ll make a referral.”  And around that time too, I had found out I was pregnant with Mateo, kind of unexpectedly.  We were under a lot of stress with her not talking and having communication issues and I don’t know that we necessarily would have planned that pregnancy so soon and close together but it would out perfectly.  They are so close and I love that they’re two years apart.  So around that same time about 18 months, she had started trying to talk, more so with her mouth closed.  So she would intonate a word or phrase and hum the syllables. And then we’d have to guess what it was.

So here’s a little clip of me talking and asking her to repeat it and what it sounded like at the time: 

So as you can imagine, that was a lot of frustration for her because we were pretty good at predicting what she was trying to communicate but a lot of times we just couldn’t get it.  So around that time she started banging her head on the wall and on the floor and having really dramatic tantrums.  Not a typical 18-month or 2-year old tantrum that a lot of kids go through.  She would just throw herself down on the floor, banging her head, and it was really frustrating for all of us.  And especially toward the end of my pregnancy, I just got the point where I was scared to leave the house with her when I was really pregnant, closer to the end.  Because I didn’t know if I would be able to wrangle her or if she would be able to hurt herself or possibly put me in a compromising position that was uncomfortable.  So we kind of hid out at home the last few months, which was okay.  It gave me more time to put my feet up and rest.  But I also felt cheated of that time of having those last few months with her of things we could have done together and not really being able to do that.  I also, if I’m being honest about it, felt cheated of hearing her and those typical funny little things that one- and two-year olds say.  Of her holding up her toys and mumbling and trying to figure out what she was saying but it just broke my heart to not be able to hear what she was trying to communicate; the pretend and imaginative play that she would go through and we wouldn’t be able to understand.

So a couple more months went by and by June, that summer, she still wasn’t talking so her pediatrician made a referral to a local children’s hospital for a speech eval.  And we went in and it was in a little clinic setting and we met with a speech therapist and she did kind of a basic assessment, just to gauge what she was able to communicate and understand.  Izzy didn’t really pay much attention.  She was more interested in the toys that were around.  I feel like she didn’t get much out of the evaluation but it was enough to to tell that there was a speech delay. 

So after it was determined that Izzy did have a speech delay, we were given a list of options of different programs and therapists that we could get involved with.  I had talked to one of my cousins that had a child with a speech delay.  She said in their state they had been involved with early intervention and they had had a good experience with it and so we decided to go that route and contact our state early intervention program.  So we met with a coordinator (that was more of a social worker) and she kind of explained the program and what we could expect.  Then we met with the speech therapist and she came into our home and did an evaluation.  Sort of similar, a little more in depth than what we had done at the children’s hospital.  Her name was Michelle and she explained that what she was looking at for Izzy’s age (she was just under two at that point—it was probably July or August before her September birthday); she told us about receptive and expressive communication.  During this evaluation she determined that Izzy had really good receptive communication.  She understood what she was being asked to do and to identify but that her expressive communication and what she was trying to put out was delayed.  But with the overall scoring, she had to meet certain criteria—it’s kind of foggy now.  I don’t remember exactly but something like less than 50th percentile.  And because she scored so well in her receptive communication, she technically did not qualify for the state early intervention program.  And I was just about in tears at that point.  We were so frustrated and about to have a new baby and under a lot of stress with not being able to communicate with Izzy at all.  She was just mumbling “mm mm mm mm mm” with her mouth closed and we were guessing and running out of patience on some days.  So the therapist understood that and was able to make an exception for us that there was a clinical need determined.  We started with one time per week home visits in August, right before she turned two.  And Izzy would just cry and scream every time Michelle would come in the door.  There was a lot of time just warming up to her as another individual being in our home.  She would pack up Michelle’s bag for her when she determined it was time for her to leave.  It was a rocky start but over time she enjoyed seeing Michelle come to the house a little bit more.  And then Mateo was born that September, right at two years apart.  And Michelle would come to our home one time per week for these visits.  A couple of months went by and she increased that to two times per week when Izzy had not made much progress.

Michelle really did a lot more than trying to help Izzy talk.  She helped us learn a lot better ways to help communicate with Izzy.  We learned some basic sign language that was helpful.  She helped us to give clearly defined choices to Izzy.  For example, a small one would be picking out which snack that Izzy wanted.  So we would hold out our left hand and say “pretzels” and hold out our right hand and offer crackers and she would point to which option she wanted.  And that helped her frustration of not being able to just tell us what she wanted.  If we gave her two clear choices, that helped us alleviate some frustration.  And also just general parenting tips, like not making it a choice if she wanted to do something helpful like cleaning up.  We would tell her “It’s time to clean up now.”  When previously we would say “Okay, are you ready to clean up?” And obviously a two year old is going to say no.  So just taking those options out and making it clear what her expectations were was an overall good parenting tip for us that we learned from her and helped with our communication.

So the following April (this is about 8 months after we’d started speech therapy), she had consistently started to make a /p/ sound, sometimes a /b/.  Those really easy first baby babbling sounds.  Other than that she really didn’t have much in her tool belt for communicating.  So at that point we were still pretty frustrated and we had been researching and praying and just in desperate need of answers.  So one day at church it just came to mind that I had this friend that I’d met a few months prior.  Her name is Jamie.  It was probably about a year prior to that.  And just kind of casually talking about that she was a speech therapist.  And at the time Izzy hadn’t even started with speech.  She was probably around 18 months or so when I had met Jamie.  And I remember Jamie talking about her job and that she worked with the elderly population.  And I didn’t really put the two and two together.  So it just came to mind one day to ask Jamie what she thought.  I met her in the hall after church and asked if she had ever heard of a child that talked with their mouth closed.  So she asked to see her.  

So after meeting with her for just a few minutes, she said that she thought that Izzy may have apraxia.  So of course I came home and just feverishly researched it.  So Jamie talked to her mentor, another speech therapist I believe from school, about it and got specific criteria to look for.  So Jamie came over to our house a couple of different times and took videos under different circumstances to evaluate her oral motor strength like eating a variety of foods with different textures, using a straw, seeing if she was fogging up a mirror when she would “talk” with her mouth closed (like if her sound was very nasal).  She and her mentor watched and evaluated these videos and were pretty confident that that was the case, that Izzy had apraxia. So Jamie came to some of Izzy’s home therapy sessions and watched Michelle and talked to her about what she thought.

So Jamie took it upon herself, again we had not met with her in a professional role necessarily.  She was just doing this out of the goodness of her heart, not getting paid for it or anything.  So Jamie looked up an apraxia specialist in our area (we were in St Louis at the time) and found a professor at a local university named Julie.  She did the typical means of communication:  phone calls, voicemails, emails and didn’t really get anything.  So after a couple of weeks, she persisted and went and stood in the door of Julie’s office at the university and politely demanded that Izzy be able to meet with her.  So in May, I believe, so Izzy was a little over two and a half, we set up an appointment with Julie.  So we drove over to Illinois to a small little clinic one Sunday afternoon because Julie was teaching during the week.  Julie took her and evaluated her and Julie gave her the formal diagnosis of apraxia of speech.  She said that it was severe and that the “closed mouth speech” that Izzy used was rare.  She really hadn’t seen that much.  So finally we got our definitive answer that Izzy had apraxia of speech.

And I had not really heard of this until Jamie had mentioned it.  So just to give some background on what it is, according to the American Speech-Language-Hearing Association (ASHA), childhood apraxia of speech is described as follows:
“In order for speech to occur, messages need to go from your brain to your mouth. These messages tell the muscles how and when to move to make sounds. When a child has apraxia of speech, the messages do not get through correctly. The child might not be able to move their lips or tongue in the right ways, even though their muscles are not weak. Sometimes, the child might not be able to say much at all.

A child with CAS knows what they want to say. The problem is not how the child thinks but how the brain tells the mouth muscles to move.”

And that perfectly described Izzy.  She understood what we were saying.  She understood what she was trying to say.  She would just get so frustrated because her mouth wouldn’t move.  She would just talk like “mm mm mm mm mm” and we would just try to guess based on the number of syllables or sometimes the context of what she was trying to say.  So we were so relieved to get that answer finally, that diagnosis.

So since Julie was a teaching professor, during her summer break, we waited another month or so.  We met with her at her office in Illinois and we would go a couple days a week at first plus we were still doing Michelle’s two days a week home visits.  So when we would meet with Julie, she would manually manipulate Izzy’s mouth to make certain sounds.  Like I remember her pushing Izzy’s tongue up from the bottom of her jaw basically to get her to say the /e/ sound.  So think about what just comes so naturally to most people of being able to form a sound or a phrase or a word and physically Julie would manipulate Izzy’s mouth to make that sound.  It was so impressive when I saw it.  I could never do it as well as her but she would teach us how to practice that until it just became fluid and natural to Izzy.  She had to literally learn every sound, every letter of the alphabet, to be able to speak.  So just think about your lips and your cheeks and your tongue… Everything moves in a way that you don’t even have to think about it.  And that’s what Julie taught her.  So she would send homework on index cards home with us of sounds to work on with words and pictures and things that we could focus on at home.  And with that intensive therapy of sometimes four sessions a week, we started to see really big progress.

By July, Izzy had started saying “Mama” consistently.  I have a video of her when I was putting her in the carseat in the back of the car after therapy one day, she just said, “Mama Mama Mama.”  It was like it was just rolling out.  It was one of the best days to hear your almost three-year old finally say “Mama.”  

I have another video when I was at work not too long after that that she would try the sounds that she could say and then she was learning how to open her mouth and talk.  So she would just kind of make a sound like she was with her closed mouth humming talking for the words and sounds that she couldn’t make.  So for example, for “Mama went to work” she would try to say “Mama uh uh uh” until she could get it more fluid.  This next little clip is from a video that Julio had taken of her at a park while I was working and sent it to me so I could hear what she was saying: .  So there’s some background noise but you get the point.  She was saying, “Hi, Mama.  I’m at the park.”

I made an Instagram account around that time so that we could connect with other families that were affected by apraxia of speech.  It was @documenting.apraxia and you can see more examples of how she was talking when she first learned how to talk.

That following August, Julie told us about the local walk for children with apraxia of speech.  It was so interesting to see older kids and see how far they’d come and what we had to look forward to.  It was really neat to see how many families in our area were affected by apraxia.  There were a couple hundred people there that day so it was a really fun experience.

So that following September, Izzy had started to phase out of the state early intervention program by the time she turned three.  So we met with the local school district and started an individualized education plan (or IEP if you’ve heard of that).  She went in and was evaluated by a SLP with the school district.  Michelle went with us to the evaluation to be our support and advocate and to help answer questions.  Izzy didn’t cooperate very well with a new person.  The therapist did her best to try to assess Izzy and did determine that she needed continued therapy.

I remember getting that written report afterward and it was not unlike anything we had before necessarily but I could see how much progress she had made up to that point and it was just a gut punch to see it that she was so far delayed still.  I knew what she was capable of and she was capable of a lot more and we weren’t stopping until we found the best resources and the best help for her.

So after that, after we started her IEP, she went to a private preschool.  She went there after she turned three, so around October or so.  Michelle would see her one day at preschool and another day at home.  She would see Julie twice a month.  Since she was teaching during the week, we would go on Saturdays.  She started seeing another therapist from the school district.  So still doing that intensive therapy up to 4 days per week pretty much that whole school year, we continued to see so much pregress.  She still met with Michelle over the summer for a day or two a week while the others were out for school.  She had kind of phased out of working with Julie at the end of that school year.

During that year after her 3rd birthday, I had a Skype meeting with a family friend that my dad had found to try to look for help also that was a SLP and she specialized in Augmentative and Alternative Communication or AAC.  And she has a daughter that uses that as her only form of communication.  So that was really interesting to hear her perspective as not only a therapist but as a mother too and how much it helped her.  And if you’re unfamiliar with AAC, it can be something as simple as pictures on a chart that a person can point to to communicate with or a device, like an iPad with a program that a user can use to point to or even have to talk for them as a means of communication.

We trialed a loaner device from a state program for a few weeks but by that point, it was when Izzy was about 3 1/2 or 4, she had started talking more and we decided to focus on improving her oral communication more.

The next school year she got a new therapist from the school district and she continued to work with Michelle.  We had made plans to move to Las Vegas that winter so she wrapped up her therapy sessions with both therapists and sort of graduated at that point.  She was a little over four and she was considered “caught up” to her friends.  Even now, she’s pretty much gotten all of her sounds.  She’s six years old now.  But she still has trouble with letter /r/ sounds.  Sometimes they’re substituted with a /w/, which is not atypical for her age necessarily from what I understand.  I remember when I heard about Amanda Gorman, the talented poet that had spoken at the inauguration earlier this year, I heard her story and it reminded me so much of Izzy about her /r/’s.  That was really interesting.

We have also read that some children with apraxia of speech may experience difficulty with reading and/or writing. Izzy is only in kindergarten and so far she is excelling in school.  She’s done really well this year in kindergarten.  That fact that there could be a potential delay or difficulty with reading and writing did play a part in deciding to hold her back for kindergarten.  The cutoff in Nevada is a little bit sooner than we were prepared for in Missouri.  Her birthday is just a few days before the cutoff.  So all things considered, we decided that we’d would rather have her have that extra year to develop and to grow and be on the best track for success in school.

We still keep in touch with Michelle, her first therapist, today.  She taught us all so much and we are so grateful for her.  She also typed up a summary at the end of every session and email it to me.  She would discuss areas to work on but also celebrate all of the improvements that Izzy had made.  I love being able to see how far she had come.  Those emails are such treasures to me.

From a spiritual aspect, we feel like Jamie was an answer to our prayers.  She persisted until she found the best possible therapist she could get for Izzy.  We are so grateful for her.  We often talk about how there had to be a bigger plan in place for our paths to cross with Jamie. And also to have been in St Louis with having Julie as one of Izzy’s therapists.  She is nationally renowned for being a leading expert in apraxia.  We moved to St Louis from Florida just to experience something new after I finished pharmacy school.  It’s not a stretch for us to imagine that all of these reasons are actually why we ended up there.

I learned so many lessons throughout this whole experience.  

One is patience.  Being a mother for the first time is a whole new level of patience in and of itself.  To add onto that not being able to effectively communicate, and to not know when or how it would improve were huge lessons in patience for me.

Another is empathy.  I feel like our family got just a tiny drop of what it feels like to have a child with a disability.  I’m not comparing our experience on the same grounds as serious disabilities.  That’s no comparison with that.  

I also learned about ways that I speak to other parents about their kids.  I think that a lot of times an easy conversation starter with parents of young kids is to ask how old they are and then to ask questions about a typical developmental milestone they might be expected to have achieved by that age.  For example, “Oh, she’s six months?  Is she sitting up yet?”  Milestones are important but they can have a wide range of variability.  I can’t remember a specific time by any means of being offended by anyone asking about Izzy’s development (I just don’t think that happened) but it can be hard and overwhelming to repeatedly have to explain that a child has a developmental delay or disability.  I might ask something like “What is she into these days?”  It puts the ball in the parents’ court as to what they want to offer.

All of this to say that if you or a loved one are dealing with a difficult health scenario and you feel like there’s more you could do, why not give it a shot?  What’s the worst that could happen?  In our case, we found so many different therapists that were able to work together with Izzy to help her be able to help her speak.  I think there were at least ten in total that helped her.  My advice is to be an advocate for yourself and those you love.  

Also because apraxia has been estimated to affect 1-2 per 1000 children, it is not especially well funded and there is a growing need for more research.  If you see a walk for apraxia in your area, I encourage you to join in the cause and participate in the walk.  We had a great time when we went in St Louis and are looking forward to attending the next walk in Las Vegas later this year.  I’ll also have the links for ASHA and Apraxia Kids in the transcript if you’re interested in learning more.

We love to connect with other families affected by apraxia so feel free to send them my way if you know of anyone or if they might want to reach out or have questions.  We’d love to talk and to connect with them.

So to finish out this episode, I wanted to invite Izzy on to talk and so that she can show off how much she’s learned and progressed and see how she’s talking now.  So I wanted to ask her some interview questions so thank you for being here, Izzy.  

L:  Tell us your name.

I:  Izzy

L:  How old are you?

I:  Six

L:  What do you like to do for fun?

I:  I like to draw and I also like to play games on my computer.

L:  Do you remember when you couldn’t talk before when you were younger?

I:  Yes.

L:  You remember?  What was it like?

I:  It was really hard to talk.  I had to see like four people.

L:  Yeah, you had a lot of people.  Do you remember their names?

I:  Their names were Michelle, Julia, Kathy, Katie, and…

L:  What do you think it would be like if you still couldn’t talk?

I:  Well, I think it would be really hard to still not talk.  No one else would know what I was saying.  

L:  And one last one.  What do you want to be when you grow up?

I:  When I grow up, I want to be a ballerina.

Well there you have it.  We’re so proud of Izzy and how hard she’s worked to be able to talk and how smart she is and how kind and brave she is too.  We know that this situation with apraxia doesn’t necessarily apply to a lot of families but I hope that you can find some encouragement in persisting and working hard to be able to reach your goals.

As always, I hope you can use these ideas as tipping off points to channel the ambition, curiosity, and desire to create the life you want to live. Thanks so much for listening. Our time is so important and I am so appreciative that you spent some of it with me.

Have a great week!