A Mother’s Journey…. My Son’s Initial Signs and Symptoms of Apraxia

This is the second in Laurie Felty’s series of articles about her son Jack’s apraxia of speech. I hope you enjoy this one as much as the first! Laura

A Mother’s Journey ……

INITIAL SIGNS AND SYMPTOMS OF APRAXIA AND WHAT LED US TO EARLY INTERVENTION

By Laurie Felty, MS, CCC-SLP

As mentioned in my previous article, my son, Jack, is 3  years old and has apraxia of speech, a neurological speech disorder that affects a child’s ability to plan, program, execute, and sequence the precise movements that are necessary to produce intelligible speech.

Jack has been in speech therapy since he was 21 months old. What I’d like to share with you are the circumstances and initial signs and symptoms that he displayed that led us to seek early intervention.

My first son, Nick, is 8 years old and was a very social, very early talker. By the time he was 2 years old, he could carry on conversations with adults and sing dozens of songs from beginning to end. In fact, he often seemed to prefer interacting with adults rather than children his own age.

I’m bringing up our experiences with Nick because, when our second son, Jack, came along 5 years later, we just assumed he would follow along in Nick’s footsteps. I know that every child is different and I wasn’t expecting an exact replica of Nick, but I wasn’t expecting any developmental delays either.

I had a fairly uneventful pregnancy. I had gestational diabetes, but it was diet controlled (with Nick I had to be on insulin shots). Because of the diabetes, labor was induced on my due date. However, Jack decided that it wasn’t time to be born because my labor never progressed. Our doctor joked that we were getting the first peek at our son’s possibly defiant personality (by the way, he was not wrong!).

I went home and was brought back in 4 days later, and labor was induced a second time. When my water broke, it was brown-tinged which indicated the presence of meconium (a baby’s first bowel movement), so right when he was delivered he was whisked away and suctioned so as not to breathe in the meconium. After those very scary first few seconds, all was well.

Medically, as a baby, Jack had frequent ear infections and eventually had tubes placed in both ears at 10 months of age. He had also developed a flat spot on the left side of his head just behind his ear, despite the fact that we put him to sleep on his back and devoted plenty of time to “tummy play.” We tried to position him every which way to keep him from resting his head on that side, but he simply preferred that position. The pediatrician didn’t seem to think it was anything to be concerned about so we didn’t either.

When Jack was 15 months old, he developed a really bad cough in which he would cough so hard he would, at times, turn momentarily blue and/or vomit. He was diagnosed with pertussis, also known as “whooping cough.” After many, many weeks and a round of antibiotics, he finally improved.

The reason I’m giving so much history is that over the next few years, I would question each and every one of these events individually and as a whole as a possible explanation or contributing factor for why my son has apraxia.

Initially, Jack seemed to move right along developmentally. It wasn’t until about 5 or 6 months of age that I began to have some niggling suspicions that things just weren’t right. He wasn’t an early babbler and was very resistant to any introductions to spoon feedings. In fact, he was so resistant that we stopped and didn’t re-introduce them until he was a few months older. These behaviors could be attributed to his frequent ear infections, so I took kind of a wait and see approach while continuously trying to facilitate more vocal play and babbling. I may have forgotten to mention that besides being a Mom, I am also a Speech Therapist.

Jack’s developmental milestones weren’t exactly average, but they weren’t too far out of range for normal development. He sat alone about 9 months and started crawling at 12 months. Jack didn’t start walking until he was 16 months old. Other than being an inconvenience having to lug that big baby around everywhere, that alone didn’t necessarily cause me concern.

What did concern me was the fact that Jack wasn’t talking either. We had seen no improvement in his babbling or attempts at first words since the tubes had been placed in his ears which ruled out the frequent ear infections as a cause for his ever increasing delay.

By the time Jack was 1 year old, he was showing more and more signs of having apraxia of speech. As a Speech Therapist, what stood out the most to me was that Jack could not imitate oral movements, sounds, or words, but his receptive language (what he understood) was right on target. Jack used “bah” or “da” for most words. For example, “bah” meant bite, Bob (the Builder), block, bug, book, Barney and ball.  “Baba” meant mama, grandma, brother, bye-bye, Big Bird, Batman, Spongebob, Blue’s Clues, etc. He also had very few vowel sounds that he could produce. Whenever Jack tried to say new words or imitate, he would produce a very peculiar sound. It was something like “tzh.” It seemed he used that sound to represent almost everything.

Because Jack was so unintelligible, we began using signs and gestures very early with him. He would use signs in conjunction with trying to say words. If Jack didn’t know the sign for something, he would try to gesture the best that he could or point or pull us by the hand to show us. Jack certainly had the desire to communicate. He even learned how to hum the “I love you, you love me” theme song whenever he wanted to watch Barney on TV or if he wanted his Barney stuffed animal.

I also noticed some “sensory” issues. Remember the resistance to spoon feedings? He was also very resistant to hand holding and tooth brushing. He hated the feeling of tags in his clothing and he had a very difficult time with food textures and with self-feeding. He loved the feeling of jumping straight up in the air or off the couch and landing hard on his bottom.

When I voiced my concerns to our family and suggested having Jack evaluated, I was told that I was too closely comparing Nick and Jack, and that Jack would come along in his own time. As an SLP, I knew this not to be true. I also knew that it would be too difficult to be both his mother and speech therapist. I routinely voiced my concern at Jack’s check-ups with his pediatrician. They were very supportive and because they knew I was an SLP, left the decision for making a referral to early intervention up to me. As it turned out, I did wait until Jack was 20 months old to have him evaluated because I knew he wouldn’t qualify for services until he got a little older and the gap between “normal” and “delayed” was more evident.

I have to admit that I was quite apprehensive about the whole process of early intervention (a state funded program that provides services from birth to age 3) and the quality of services that he would receive. Once I called and initiated services (a parent can make the referral), I realized I had nothing to worry about. Jack had a service coordinator who oversaw everything and was in regular contact with me. He had a speech therapist that came to our house weekly to work with him, and he had an occupational therapy evaluation. I honestly feel that Jack received the absolute best services possible.

I want to make clear that I am not advocating that parents wait to have their child evaluated if they feel that there is a possible delay. I am in a unique position because I am a practicing Speech-Language Pathologist. I was able to facilitate my son’s expressive speech in a way that many people cannot. In fact, when he was evaluated by his speech therapist through early intervention, she commented that Jack would probably have been non-verbal had he not had a mother who was a speech therapist and worked with him continuously.

When Jack turned 3 years old, he transitioned from early intervention to the school system for speech therapy with a few private practice therapists thrown in there in the middle. Although Jack continues to make progress, our experiences from that time on have not been as favorable, but I will save that for another article.

Posted in

Laura

20 Comments

  1. Holly on April 29, 2008 at 2:48 pm

    It’s so puzzling and not always as forfront of a disorder to catch. My son who’s going to be 4 this June has been in therapy since he was 2 1/2. As a baby he was never sick, and I mean never what a blessing he was however colic for sure. We had no problem with sensory issues at all and he walked at 9 months and also starting talking at the same time. He cleary said mama, dada, bye bye and doggy. The weird thing with my son that I really question to this day still after much reading and research on apraxia is the fact that once he started eating ‘regular’ food and drinking whole milk he speech seemed to almost halt at 12 months. After that point is was a new word or two every few months or so and they weren’t clear at all. It’s still a battle now he’s come a long way however and most of the time I can understand him except sometimes with a long sentence he still loses me. I’m going to try the fish oils to see if maybe that’ll help and I often wondr about having him tested to see if he might have a casein allergy or not. I really would’ve never known he had a speech disorder or delay if it wasn’t for my doctor who insisted I had him evaulated. I hope now that my second son will not have the same issue struggling and fighting for my oldest is so hard I don’t know how I would handle two with the same disorder. My son currently sees an SLP 3x’s a week and sometimes I wonder if he really needs more or not. I try to help him as much as possible at home but he’s getting to the point now that he looks at me and says,”that’s what I said mom” and gets really upset with me. It’s so hard somedays I just want to cry. I just hope that he keeps coming along so by the time he starts school he’s not picked on, that’s my biggest fear kids can be so cruel. It’s nice to see (please don’t take it the wrong way) that even an slp themselves can have a tough time recognizing apraxia. I know the guilt I have is never ending with all the questions and what ifs and why didn’t I’s. It was nice to read both your articles of what your road’s been like both from a professional and mother’s view:) Thanks

  2. Laurie on April 30, 2008 at 7:29 am

    Holly – Your’re right! Apraxia is a very confusing and difficult disorder to understand – even for professionals. Not every child has the “classic” symptoms that are easy to identify and some kids may only demonstrate a few of the characteristics or a very mild version of it. In fact, many kids are often misdiagnosed. Kudos to your pediatrician for picking up on your son’s speech delay and referring him for an evaluation!

    When reading about my son’s signs & symptoms, they sound pretty cut and dried. Yes, he had sensory issues but I honestly didn’t connect all the dots until his early intervention evaluation. It was like an “a-ha” moment for me when I began describing my son’s behaviors and realized that all of these little quirks actually added up to a sensory problem.

    As far as saying words and then losing them, that’s not uncommon for kids with apraxia. My son used sound combinations (such as “L” blends) and words early on that we’ve never heard again, or at least correctly again. Once, when Jack was almost 2, he popped out with “remote control” just as plain as day but then couldn’t do it again. My husband and I just looked at each other with our mouthes open.

    I think it’s great that your son is in S.T. 3 times/week. Most programs don’t allow for that much therapy but it is necessary for progress. It sounds like your son has come a long way. It can be very frustrating working with your son’s speech struggles. There have been many times I’ve felt like crying myself. Hang in there and don’t give up!

    I’ve really been considering trying the fish oils with my son too. I’ve heard mixed reviews about it but if his pediatrician says it’s okay, I’m willing to try just about anything. If anyone has any more information about this, I’d love to hear it.

    Thanks so much for your comments. It’s good to know other people struggle with the same issues that I do!

  3. Allison on April 30, 2008 at 9:34 am

    Laurie,

    Thanks for your articles! And you’re right, so many kids with apraxia are different. My son was actually just released from private therapy yesterday (woohoo! 105 for receptive and 112 for expressive on his PLS-4 with decent artic) at age 3.10 and most professionals who look at him now would say he didn’t ever have apraxia. But he did — just a relatively mild case. But interestingly, his receptive language was behind his expressive language when he was 2. Not classic apraxia for sure, but rather having an auditory processing issue on top of the apraxia. So while many children with apraxia might have the basic “look” of it, it’s important to remember that, sometimes, there’s more going on than just apraxia that could impact speech.

    BTW, I’m all about the fish oil. My SLP, after seeing Alex’s dramatic improvement on it, has all of her clients on fish oil now and has seen improvement in all. I’d be happy to share the info with you — or you can come visit us at the Ivillage Speech disorders board (Laura knows where that is….we love her there!), where we’ve got a thread just on Fish Oil Basics.

  4. barb on April 30, 2008 at 10:23 am

    Laurie : i have a question based mostly on the second Response mentioning FISH OIL — I have read in several Online, other, books, etc. about this Omega-3FattyAcid supplement having ‘possible’ aid in helping the brain connections which may be the problem in Apraxia …. one article said the brain is made up of
    mostly Fat ? Do you recommend or are you familiar with this concept of the FISH OIL ? apparently, many persons used to get more natural fish oil in their diets (and recall : Cod Liver Oil ? in past ?) … two questions :
    (1) have you ever seen evidence of med-high dosages (for one’s body wt.) of fish oil helping apraxia ?
    (2) do you know of any medical reasons a 3.5 yr. old female should not take fishoil ? or take perhaps double the suggested dosage for that age ? often natl. food places have liquid fishoil for children and fishoil supposedly from waters with few toxins and the oil is distilled or filtered to remove virtually all metals/toxins …
    THANKS Barb

  5. Monica on April 30, 2008 at 3:45 pm

    Thanks for the article. Many similarities to my situation. I am in the beginning stages of trying to figure out what is wrong with my son. But I am pushing for early intervention and not waiting around for him to just simply, “catch-up”. I really want to educate myself, so that I can be my son’s best advocate. I look forward to reading more. Thanks again!
    -Monica

  6. Laurie on April 30, 2008 at 6:28 pm

    Barb – I have to say that I am only now educating myself about the use of fish oil and it’s possible benefits for apraxia. I’m looking for answers to a lot of the same questions you have. I’ve read many reports from parents who swear by the improvement they’ve seen in their child’s speech, but on the flip side, I’ve also read accounts where parents have seen no change. As far as I’m concerned, it has to be at least worth a try. My first step is going to be to talk to my son’s pediatrician and find out what he recommends as far as dosage and what the possible side effects are, if any. I’m also going to check out Allison’s suggestions from a few comments back. Sorry I couldn’t be of more help.

  7. Julie on April 30, 2008 at 8:47 pm

    As Allison said, check out our ivillage speech disorder message board. We talk alot about fish oils. I started giving my son the oil after getting started with the girls on ivillage and WOW! That week, his developmental therapist, ST, and daycare providers all commented on how much more he seemed to be talking. I hadn’t told anyone because I wanted to see if I was imagining the improvement I saw in him in (seriously) 2 days. I give my son the Nordic Naturals 3-6-9, I get it from GNC (you can find it online too.) It is an adult formula and I give him 3 softgels, poke a hole in them, add them to some lemonade and that is it. He did have some loose stools and restless nights at first and if he takes it in the afternoon instead of am, I don’t think he sleeps as well. But sooo worth it. We upped the dose very gradually and every time, we notice an improvement. Check out our ivillage board, it has some great info on it! Oh and great article, my sons therapists thought he was autistic, and then after I talked to the DT about apraxia and she researched it, she changed her mind. A developmental ped. has diagnosed him with apraxia (and he also praised us for already having Gabe on fish oil!)

  8. Laura on May 1, 2008 at 6:10 am

    Coming soon…. Fish Oil Info.
    I have asked Allison (author of “Mommy Gut”), a mom with significant experience with fish oil, to put together a feature length article for those of you who are looking for more information. Look for it in the next couple of days! Laura

  9. Holly on May 1, 2008 at 1:19 pm

    I would love to hear more about the fish oil topic too. There’s so many different ‘ones’ out there and its hard to know which ones are ‘actually’ working for apraxic kids. I will look forward to reading Allison’s information and eager to try it.
    As far as Allison’s son goes with receptive vs expressive langauge skills goes, that is odd because most apraxic kids like you said have excellent receptive skills. I know my son understood everything we said and still does to this day even above and beyond his age level(he’s constantly shocking his slp’s) but he can’t really express his opinion or ideas a lot of the time. I just want to cry sometimes when he tries so hard to say something and no matter how many times he tries, he just can’t get it out. This past week for some reason has been really tough on him for some reason. His speech has seemed to ‘slipped’ backwards if you will and I can’t figure out why. I know he’s had more milk products than normal and really can’t help but wonder if that has something to do with it. I really want to ask his ped if she would test him for a caesin allergy why not right doesn’t hurt to try.
    Just an idea to share with you all as well. I recently bought the game Cariboo by Cranium to play with my son and he loves. What a great ‘speech and language’ game. My SLP was so impressed with it that she borrowed it and used it with her other kids ages 3 and up. Once Nathanial had all the words down that were on the cards, I simply changed the pictures to work on new sounds with him. Just thought I’d share something that worked for us.

  10. Allison on May 1, 2008 at 6:18 pm

    Holly,

    Yeah, my son is sort of an enigma with the (previously) low receptive score. But it is possible, and common, to have more than 1 issue, when your child has one issue that’s been identified. Alex actually has the more global dyspraxia, not just apraxia, affecting his fine motor skills.

    And it’s funny that you mentioned Cariboo because his OT recommended that game to help strengthen his finger muscles and coordination for pre-writing stuff. My kids LOVE it!

    One other thing I noticed that might help you with your concern of your son’s slipping backwards — it seems that many children regress for a time right before they’re about to take a leap forward. My son does that — for about a month, he’ll seem to regress. Only to suddenly not only recover, but far surpass where he was before. So sit tight for a month or so, and keep your eye out for big progress from your son.

    HTH!

  11. Laura on May 1, 2008 at 7:17 pm

    I was just about to post on seeing regression sometimes just before a kid has a HUGE breakthrough, and Allison beat me to it! This happens frequently with children with apraxia, and toddlers in general.

    I have heard so many good things about the Cariboo game that I just bought it, but I have been so swamped, I haven’t even taken the plastic wrapper off yet! A note of caution to moms with 2 year olds who are sensory seekers and still need to mouth things -this game looks like it might have several small, chokable parts! This would be a good addition once a toddler moves past a constant need to mouth what he’s holding, and it seems GREAT for kids who don’t have that issue. Laura

  12. Laura on May 2, 2008 at 7:00 am

    One more comment about apraxia and the whole receptive/expressive language issue. Many children with other disorders at the root of their communication difficulties (such as autism or Down Syndrome) also exhibit motor planning problems as the reason their speech is delayed. So for children with verbal apraxia as their sole issue, their receptive language skills are significantly higher than expressive language skills.

    However, for other children with issues such as autism or Down Syndrome, their expressive language skills may be higher because of difficulties with auditory processing or cognition which ultimately affect receptive language scores.

    Children with global dyspraxia also sometimes score lower on a receptive language test because they can’t motorically “do” all of the things required to indicate that they understand something. I currently have a set of triplets (of whom I only see 2) that are exactly in this situation. Their cognition and receptive language scores look horrible (in addition to low language expression skills) mainly because they can’t “plan” how to complete the tasks on the receptive language portion (i.e.= Put the block in, take it off, etc…).

    Don’t forget that apraxia is sometimes part of an overall issue rather than the only issue. Laura

  13. Holly on May 2, 2008 at 7:29 am

    Allison and Laura,
    You’re are so right about there being other underlying problems not just apraxia of speech and I’m sorry I skipped over that area. Laura would it be possible for you to post that article you read or to tell me where I can read it about regression before going forward? I would love to read it, could use the reassurance from it 🙂
    Cariboo has rubber balls in it around 1″ around and one plastic key that’s roughly 2″ long and just under a 1″ thick so I think as long as an adult is around to watch those that still like to put things in their mouth its really quite safe just my opinion as a mom 🙂 It’s great fun and like I said, changes the pictures on the game to hit key sounds, blends etc that the child has problems with creates almost a whole new game too. I also combined the beginner and advanced cards to meet my son’s level with counting and letters.It can be a little confusing however to make sure you have the cards and pictures to go together, we played a few times when I change the pictures on the game and had to keep ‘fixing’ it so it worked. The Hullabaloo game is pretty good too expecially for active kids like mine. I just add a little too it by pauses the dvd and making my son name the color,shape and/or animal before he can move and the game continues.
    Laura I love you sight and the information and ‘friendliness’ of it is awesome and I’m glad to share my ideas and experiences as well especially if it’ll help out another mom 🙂
    I hope you are both right as far as my son’s regression goes and that for his sake mostly, he makes a giant leap forward with his speech soon. I’m sure you can all find the humor in this….my son’s turning 4 in June and when people ask him how old he’s going to be he says that he’s ‘poor’ I can’t help but laugh now when he does. Most people don’t understand though and look at me like I have 5 heads 🙂

  14. Laura on May 2, 2008 at 7:21 pm

    Holly – There’s no article on regression that I’m referring to. It’s just what I’ve learned during my 15+ year career as an SLP. We noticed this too in our oldest son as a toddler (and he’s 18!), so I think it applies to kids in general and not just about speech . The “plateau” concerning progress in kids with apraxia is well-documented, but I’d have to look it up to give you a hard reference. Laura

  15. Julie on May 2, 2008 at 8:19 pm

    We have the Cariboo game also. We have been trying to teach Gabe his letters and I bought a piece of posterboard, some of the sticky backed house numbers and letters and made my own cards for the game. It has been great! We don’t really play the way you are supposed to…I ask him to open the A, etc.

    Julie

  16. Holly on May 4, 2008 at 9:51 am

    Laura-Sorry about that I guess I misread, wouldn’t be the first time 🙂 Hopefully he’ll take off soon.

  17. Holly on May 15, 2008 at 12:11 pm

    I’m soooooo upset. I just found out that we’ll be losing my son’s therapist. Her contract is up with the school system come fall. I don’t know if or how far back this is going to set my son and he was making so much progress with this slp. Has anyone had experience with a change over like this and did it effect your child?

  18. melissa on June 29, 2008 at 4:16 pm

    What kind of therapy can I do at home?

  19. Laura on June 29, 2008 at 6:35 pm

    Melissa – I’m so glad you asked! This whole site is FULL of ideas to do at home. Keep reading! Laura

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