Wednesday, January 5, 2011

This can't be happening to her.

My daughter isn’t talking. Well, she isn’t talking much. Warning bells have been ringing in the back of my head for months, but I ignored them because her older brother was a late talker too and now is significantly above average at just a little over three. Whenever I would express my concerns to other people, they’d just say that she was fine. She obviously understands everything said around her and her brother turned out fine, didn’t he? So I waited, and waited. I just wanted it to “kick in” so I wouldn’t have to worry any more.

The funny thing is that I’m a speech-language pathologist. I know how normal speech development works. I knew this was different. But I still procrastinated convincing myself that I could wait because everything turned out fine with Michael.

Finally I just couldn’t wait any more. I started making phone calls about a month ago. I called her pediatrician. She told me to start with a hearing evaluation. It’s scheduled for the end of January. Two months to confirm what I’m pretty sure I know – she can hear. Found out that our insurance doesn’t cover speech therapy for children unless they had it and lost it (like with a head injury). Started her with a private therapist who agrees that things aren’t right. Twice a week for 30 minutes. Seems like so little time to try to fix so much.

Called Missouri’s First Steps program. This is the program in Missouri that serves the birth to three population. They scheduled an evaluation, but doubted she’d qualify. In order to qualify, she’d have to score as low as a child half her age – 11 months on a language subtest that combines how she understands language as well as how she speaks language. Well, she understands just fine which was bound to bring the score up. I scheduled the evaluation anyway. At the very least she’d be evaluated by someone with a lot of experience with little ones who could confirm my concerns even if she didn’t qualify. I called the local university’s speech clinic and investigated the possibility of her being seen there. Anyway, I made a lot of phone calls and set up a lot of appointments. Then it was the holiday season and things were so busy I escaped for a while.

What I can’t seem to do is think about the situation on an emotional level. Every time I try to think about the fact that my baby has a severe speech delay I just completely break down. Which is completely useless and unproductive. I’m a speech pathologist. Who better to try to help a child with a speech delay? And I just can’t seem to do it yet. I need a clear head to research and plan goals. I need a clear head to sit down with her and work with her like a professional rather than an extremely upset mom. And I just can’t. And I feel incredibly guilty about it. Ever since making the phone calls I’ve been trying to just tune out. Try not to think about it. At least it keeps me functional as a parent who’s the primary caretaker of two small children.

Today was her first steps evaluation. Good news is that in every single area except expressive language (speech) she’s above average. Tests at 2 years of age or older. Bad news is that she scores like a 6 month old on the language portion of the test. 6 months old!! That’s nearly a two year gap between her ability to talk to people and everything else. She’s not even two years old yet.

And unofficially, it looks a lot like childhood apraxia of speech. Which I knew. I’m a speech pathologist, of course I knew. But it sucks to have someone else agree. No one would officially diagnose her at this age. But she’s normal everywhere else. No sensory issues. No social issues. So few consonants (only two). So few vowels. No imitation. No vocal play. I suppose I should just be grateful she’s going to qualify for services. And I am. Really, I am.

But I’m mostly just incredibly sad. Not for me. Just for her. I’m terrified of a future in which my bright, cheerful, independent, sweet girl cannot express her thoughts and feelings to the people most important to her. Of how peers and school will treat a little one who continues to be silent when all around her are talking. She’s so smart and no one will know. How will she continue to keep up when she doesn’t get to participate in conversation with her family? She can’t ask questions about things that interest her. She can’t comment on things she thinks are funny. She can’t ask for help. She can’t tell us why she’s sad.

And I have to help her. I have to. It’s my job. I’m her mommy. And I can’t yet because my emotions won’t cooperate. When does it get better? When does this stupid diagnosis stop being the only thing I think about all day? It’s there when I get up. It’s there when I’m trying to go to sleep. It sneaks up on me during every quiet moment of the day.

I’d love to come up with some succinct summary of this mess, but I simply don’t have anything else to say right now.

13 comments:

  1. My son is almost 28 months and I'm pretty sure that he has CAS. It's interesting because so many people urged me to become an SLP, but instead I chose the route of school and child clinical psychology. I have been trained in psycho-ed evaluations, but I don't have the skills to help my son.

    He is a perfectly happy, healthy and normally developing young guy - with the exception of his expressive speech. It pains me to know that he must have so much to say but he just can't say it. He tries so hard to communicate and it's frustrating for both of us when I don't understand his gestures. Luckily I mostly know what he is trying to say.

    I bought a book called "Here's How to Treat Aparaxia of Speech" by Margaret Fish. I was wondering if you had read it and what you think of it. It's newly published so you may not have even heard of it.

    ReplyDelete
  2. I have not read that book. I did go to Amazon and read the product description. I also found some sample pages on the publisher's website: http://www.pluralpublishing.com/media/media_hhtcas_SamplePages.pdf I found a review of the book by an SLP here: http://www.pediastaff.com/blog/book-review-here%E2%80%99s-how-to-treat-apraxia-of-speech-2528.

    From what I read, it looks really good. If it weren't $75 I would seriously consider buying it for my own use and to then review here. My only concern would be that it might be difficult for a parent to understand. Let us know what you think of it after you've read it. Let us know if you think a parent who isn't a speech pathologist would find it to be useful. Let us know if it helps you to plan activities to do at home with your son.

    Good luck with your son. I know how frustrating and sad it is when they have so much to say and can't get it out.

    ReplyDelete
  3. Hi there,
    I found your blog a few weeks ago after my 34 month old son was diagnosed with Apraxia. Your post could have been mine. I have a blog too, but have been unable to write about my emotions because all is too raw right now. I read bits of your blog here and there - as much as my emotions can stand. Thanks so much for sharing your story.
    Kristina

    ReplyDelete
  4. Thanks Kristina for the compliment on my blog and good luck with your son.

    I know what you mean about things feeling raw. Every time I re-read this post I am transported back to the time when I wrote it. I'm glad I wrote that post, because it helps me keep in touch with what things were like at the beginning and how they do get better with time.

    ReplyDelete
  5. Thank you so much for this blog...my son is almost 4 and has been receiving services for his expressive speech delays for 1 year now. I worry so much for him and his future and I'm letting it overwhelm me in so many ways. Your blog has so many great ideas..and it helps to hear other moms echo my same feelings...I need to know I'm not alone.

    Thank you.

    ReplyDelete
  6. Wow just found your blog researching fish oil for CAS and have just kept reading. My daughter is 4 and a half and has severe CAS only 5 words. We have been in early intervention (we live in Australia) for 3 years and it seems her speech therapists are only interested in AAC which frustrates me. We have begun seeing another speech therapists who is more active in teaching sounds and prompt.
    This is not how I thought things would be and hoped speech would start to happen but it's not and just breaks my heart that she cannot express herself and interact with her peers like she wants to. Thank you for being so open about your experiences and emotions and your professional input to. I look forward to reading more on your blog :)
    Lyndal

    ReplyDelete
  7. Hi,
    I am an SLP and currently have a caseload that is heavily filled with children that have CAS or severe speech motor planning delays/disorders. I was curious as to what therapeutic technique or method you have been using to treat your daughter. I use PROMPT tactile cues to treat my cases (I find this method highly effective) but I am always interested in other methods/techniques used out their for treatment so as to round out my therapeutic repertoire.
    Thanks,
    Victoria

    ReplyDelete
  8. Reading this breaks my heart. I am going through such similar emotions and thoughts, and you have written so succinctly what is going on in my head right now about my bright, beautiful child who cannot talk. We are just beginning our journey, but I look forward to reading more about yours. Thanks for sharing.

    ReplyDelete
  9. Thank you for this blog and for the resources. I understand the emotions and wish to see progress with my daughter who has articulation difficulties even though SLP says it is not CAS I see similarities and not the progress I was hoping for

    ReplyDelete
  10. Hi, I have a 18m old who only says mama and randomly. She is getting feeding (for some sensory issues) and speech therapy. She is also getting tubes and adenoids removed at the end of the month. I suspect apraxia bc she hardly replicates, jargon, stick her tongue out however her SLP suggests low muscle tone on her upper part of the mouth and mild ear loss has a cause. She only did 2 sessions so no improvement here. I am planning to attend a session so I can replicate home but in the mean time, how do I know for a fact if she has CAS? She used to babble, said hi, bye and then lost it some time around 12m. We are checking her for everything but except for speech (she scored receptive at 22m and expressive at 6m) and OT (scored at 11m) she seems fine. We are also bilingual (80% English though, she is in daycare). Thanks

    ReplyDelete
  11. OMG, I can SOOOO relate to this post. My son is 2 and just dxd with suspected CAS and is at about 15mo level. I feel so sad and overwhelmed by it, day and night! I am a sign language interpreter by trade and communicating is my PASSION and my heart breaks for this little man of mine. Newly dxd here so hope to continue to put one step in front of the other and hold on to the dream that one day I will be hearing " i love you mama"

    ReplyDelete
  12. Just found your blog and you have literally written what I'm thinking and feeling. My son is just over 2,5yrs and recently dxd with suspected CAS. Completely heartbroken for him and frightened about what the future holds for him. We have private speech therapy lined up (Hanen method) and we're teaching him sign language. I long for the day he calls me Mammy but we're just taking it 1 day at a time. Thanks for sharing x

    ReplyDelete

Web Analytics