Tuesday, March 12, 2013

The impact of speech

I read Carly's Voice: Breaking Through Autism recently and it raised so many fascinating questions.  And, this book was truly inspirational.  What that family went through to get to Carly is incredible - I highly recommend this book especially if you are a fellow special needs parent!  Carly is autistic and practically non-verbal and it wasn't until she was older that they had a breakthrough.  After the break-through, she goes on to be able to take typical classes for her age and even some advanced classes.  And her writing is beautiful.

Have you noticed that speech can mean so many things?  As in, the lack of speech, the way one speaks, can all be judged to determine one's intellect?  Specifically, verbal speech.  If someone does not speak well, are they not as smart?  If someone speaks beautifully, but says silly things, are they not as smart?  If someone is unable to speak, are they judged in a negative light?

Luca's biggest developmental delay is in speech.  She is within normal range for receptive language (as in how much she understands, how well she can follow directions, point out appropriate pictures and items, etc.).  But her verbal speech is lacking.  She is trying so hard and she watches my lips closely when I pronounce things for her.  She can say some words well, and some syllables.  Putting syllables together is where she is struggling.  She has dozens of what we call "word approximations", as in words that she attempts to say and because we know how she attempts to say those words, we know what she is referring to.  She primarily communicates through sign language, pointing, etc.  She knows about 100 signs and uses tons of them throughout the day.

I cannot tell you how exhausting it is doing all of this homework for her speech.  And I have high hopes that it will all eventually click for her.  It breaks my heart when she is trying so hard to communicate something to me, grabs me by the face and repeats the same sound over and over and over again, then comes up with a new sign to try to communicate it to me, and I have no idea what she is saying.  I cannot imagine how frustrating it must be to know what you want to say, and not be able to get it out.  She must feel so trapped sometimes.  When this happens, it often leads to many tears and possibly even a tantrum, and I cannot be angry at her in these times because these are instances beyond her control.  It breaks my heart to see my child struggle with anything, especially with something that is such a basic and vitally important function.

I woke up in tears recently. I had had a dream that she was speaking.  She had come up to me, grabbed me by the hand, and I was in the middle of cooking and said to wait a second, and she just came out with a complete phrase.  In the dream, I whipped my head around and exclaimed "what did you just SAY?!" and she repeated it perfectly.  Clearly, this struggle is something that worries me, even while my mind should be turned off sleeping.

We have excellent speech therapy and we are talking about her options for therapy come this fall when she can start a more intensive program.  We also have plans to remove her g-tube later this spring if she continues doing well medically, and that should help her core muscles.  There are some studies that link speech delays with g-tubes, but we shall see if it helps when we remove hers.

At the end of the day, I still worry about her.  I am too well aware that delays as a cute little kid are perceived very differently than delays as an adult.  And I worry that she will be judged.  People in public always ask "why doesn't she talk" and I want to scream at them in response.  Strangers, judging already.  It makes me sick and I want to run and protect her from such judgment.  Interestingly, kids seem to accept her for exactly who she is.  Older children will say "why doesn't she talk" and after I offer them a very short, "she talks with her hands, she does not know how to use her voice yet", the kids normally accept the explanation with a shrug and turn and take Luca's hand and say "come on Luca" and off they go playing, the lack of speech from Luca is a nonissue.  The judgment typically comes from parents, the adults.  And I so wish in those moments I could say, look at the non judgment from your child, and learn from it.  Oh the innocence and beauty of children, why are we not paying more attention to their pure kindness and learning from it?

I want them to see Luca through my eyes.  She is beautiful - I do not mean physically, but as a person.  (Although, yes I think she is pretty stinking cute too. )  She is hilarious.  She has such personality.  She is so feisty.  She has lived through more than most.  She is smart.  She is the kindest child I have ever met - so willing to give love to anyone and everyone.  She will share any toy with any child as long as you are there with her, spending time she her.  She has empathy and compassion that we should all learn from.  If she sees someone cry, she is the child in the room who stops and wants to go offer support.  She is curious.  She is a daredevil, always up for trying anything.  She is so focused.  She is a free-spirit, always going at her own pace, staying true to herself.  She is willful, sometimes frustratingly so, but thank God for that strong will.  She finds joy in simple things.  She is loving.

My sweet girl - I will fight and fight to get through to you, to help you.  I hope you continue to be you and I pray that you are surrounded by love and understanding, always.  And I pray in time, that you can communicate in anyway you wish to.  Until then, I will continue dreaming of the day that you speak to me.  People say, "oh when she starts talking, she'll drive you crazy with nonstop talking."  Oh how that is my wish.

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  1. I've never dreamed of Corrigan speaking, but I can imagine it would be startling. I know exactly how you are feeling here, I would do anything for Corrigan to be able to speak fluently, but we do pretty well with signs, single word approximations and pointing too. I know my next year's fight is for augmentative speech devices through his school. He NEEDS something to help find his voice.

    Of course, I pray constantly that God will simply loosen his tongue and there will be a breakthrough, but until that miracle occurs we march onward and, like you,fight for whatever it is he needs.

    Year 4 was HUGE in speech gains for us, and when I look at old videos, it is amazing how far he has come since he was 2. It doesn't seem like it, most days, but old videos to compare really show the improvement.

    I am hoping Luca's breakthrough is soon, and that she sees huge gains very soon, because life is hard enough without having a "voice."

    1. I knew you would know how this feels, Mindy. Sadly, we both know how frustrating these things can be for kiddos. A speech device would be AMAZING for C. We have already started looking into them for L.

      I hope we see progress like you have seen with Corrigan. I am so glad you took videos so you can look back and see PROGRESS!!


  2. I would love to get together some day and get your insight on Kolton. I have to get those sign language DVD's you mentioned! I'm not kidding that the way you describe Luca's communication is exactly like his. Only, Kolton isn't special needs...is he? IDK sometimes I wonder if we will get a diagnosis. Nobody seems to have any answers and I also think our speech therapist is a waste of time. But, we are getting a school evaluation done soon to see if he qualifies. I'm just so worried about labeling him at 2 years old!

    1. I will email you, Traci! Maybe we can facetime sometime in the next couple weeks? And I use special needs very broadly (probably not like most people do), but rather when I say special needs, I use it as a catch-phrase for anybody that has any developmental or behavioral struggle with their child. I understand the fear of a child being "labeled" but I think I have gotten past that fear with Luca. I do not care if they can even find a label, I just care about her getting the therapy and attention she needs and deserves.

  3. I can only imagine how hard it is to deal with adults that judge Luca because she is not able to verbalize her thoughts quite yet. Is it related to the urea cycle disorder?

    1. It certainly brings out the mean mama in me! There are so many theories as to what is contributing to her speech delay. The initial urea cycle diagnosis (even though that is not a factor anymore since her transplant), the fact that she has spent so much time hospitalized, that she has a g-tube, that she did not take a bottle as a baby makes her palette a bit different shape, the fact that she learned to eat so much later than others and thus has less practice using those muscles, the fact that she has a weak core from all of the trauma her belly has been through, and because of the g-tube and belly trauma has much less breath control than kids her age, etc. - these all can contribute to speech delays. The list could go on with more details - but basically these all are likely playing some role in why she is the way she is right now.


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