Several months ago Cece had a speech evaluation with who is now her speech therapist. I was in the room and discussing with the therapist Cece’s speech strengths and deficits. The therapist asked me many questions and observed Cece. Towards the end of the appointment the therapist was explaining to me what she felt were Cece’s speech issues and how to address them and then she asked a very important question.
What do YOU want Cece to get from speech therapy? Little did I know how profound this question would be. How much such a simple question could bring up such strong emotions for me. I started to answer, but had difficulty getting the words out. She handed me a tissue as finally I was able to tell her “I just want to be able to have a conversation with my daughter! I want her to be able to tell me how she’s feeling, her wants, her needs, her joys, I just want her to be able to talk to me!”
I sat there crying, unable to control my emotions. Such a simple question. She told me that my answer is a very common response to that question when dealing with children who have severe speech delays. I apologized because I was embarrassed by my loss of control but she understood completely and told me there was no need to apologize.
Cece has been receiving speech therapy now for about 9 months. She has speech therapy three times a week one on one with her therapist and also she receives speech therapy at special ed. preschool twice a week. Her speech has been growing by leaps and bounds. She is now able to better express herself but she still can’t have a conversation.
One of the goals on her IEP is for her to be able to answer “yes” or “no” when asked a question. Sounds very simple doesn’t it? We have yet to reach that goal. We try to offer her as many choices as possible during the day and encourage her to use her words to tell us her choice. Sometimes she’s able to answer but most time she simply repeats the question. Lately she’s been repeating over and over again “Elmo or ABC’s?” “Elmo or ABC’s” “Elmo or ABC’s” this was a choice that I had offered her a couple weeks ago I had asked her “Do you want your Elmo cup or ABC’s cup?”
Cece has been developing what her therapist is calling self regulating self talk. Her therapist says that she sees this type of communication frequently with children on the Autism Spectrum. What is self regulating self talk you are probably wondering? Well in Cece’s case it is how she talks to herself to remind herself what it is she’s supposed to be doing. For example she will repeat over and over “Leave socks on, leave pants on, leave shoes on”, “Leave socks on, leave pants on, leave shoes on!”. This is her way of remembering that she needs to keep her clothes on. She will also correct herself when she knows she’s doing something she’s not supposed to be doing. For example she’ll say things like “Don’t touch!”, “Out of the kitchen!”, “Get down” “Leave door closed” etc.
We’ve been working on encouraging her to use sentences. She has the words to demand/ask for things now. She can say water, color, diaper, sandwich, wash wash, and other words to express her wants but we are now making her expand her words and communication by having her say/sign a sentence instead of just demanding said item. So now when she brings me her cup and says/demands “Water!” I stop her and coach her to say or sign “I want more water please, Mom!”. She has to do this before she receives whatever it is she is asking for/demanding. Some times this is a struggle and a source of frustration for not only her but also for me. At first it was a battle to get the words/signs out of her but now she’s learned that she gets whatever it is she wants much faster if she uses her words/signs.
Although Cece can now say/sign sentences and is learning to communicate better she still cannot do so without prompts/coaching from me or someone else. She cannot tell me about her day at school or what she did during respite care. There have only been two occasions where she was able to give me some hint of what she’d been up to. One time she was getting off the school bus and told me “MOOSE!!!!!!” and the driver told me that they had seen a moose on the way home. Another time when I asked her about her day at preschool she told me “Fun!”
Everyday after school I ask her about her day. I take her art work and papers out of her backpack and ask her about them. Some days if I’m lucky the teacher has had time to fill out a paper that gives me a brief synopsis of Cecelia’s day. I love those papers. I cherish each one . At the top it says My Day at School, then it has boxes for the teacher to fill in or mark. It gives me an idea of what she did, how she was during the day (happy, tired, mad, cooperative, talkative , quiet etc.), what therapies she had, what she ate, and an overall review of the activities of the day. When I see one of these papers in her backpack I get very excited and not only am I overjoyed to have an idea of what she did during the day but also I can use them to ask Cece specific questions about her day and try to encourage her to tell me about it.
Cecelia is so excited that she has words now, that she can communicate with me and others. She gets so excited that she’ll run up and yell the words right in my face, close enough that I feel her breath on my face. This brought about another issue and we are trying to find ways to teach her about personal space and the volume of her speech. I love that she has words now but really don’t like to have them yelled in my face. But thankfully some how I don’t know where from, Cece learned to whisper. I don’t know if it was from my constant shushing her and asking her to not yell in my face, or from therapy or school but now I can say “shhhhh” and she will now whisper her words in excitement instead of yelling them. She still whispers them inches from my face but it’s progress.
I feel like the mass majority of my day is spent being almost like a sport commentator. I am constantly talking and telling the girls what I am doing, what they are doing etc. I didn’t realize how unconscious this commentating had become until one day a while back I was at the grocery store.
A friend was watching the girls and I was doing some grocery shopping by myself. I am walking around Safeway pushing my grocery cart ahead of me. I am slowly going aisle by aisle picking out things and putting them in my cart. I am going down an aisle and I say out loud “Oh Mommy needs to remember to get some more whatever it was!” This is when I realize the girls aren’t with me. I quickly glance around to see if anyone had seen me talking to my imaginary children. Thankfully no one was around. How long had I been doing this? How many other aisles had I been walking up and down babbling to myself?? LOL
So why did I feel the need to write this post today you wonder? Well Cece is sick. Last night she wasn’t feeling well I could tell because she just wanted to rest on the couch. This morning she didn’t want to get out of bed. At 10 a.m. I decided it was time for her to move to the couch (picture above). What’s wrong with her? How’s she feeling? I can only guess the answers to these questions. I observe her closely to see if there is any indication of what might be causing her ills. I check her temperature, no fever. I note that I have a sore throat maybe she does too.
Cecelia can’t tell me what’s wrong. She can’t tell me her tummy hurts or her throat is sore. At most she whines and says and signs “Owie”! But other than that I have to guess at what is the matter. I yearn and look forward to the day when she will be able to say “Mommy my tummy hurts.”, “Mommy I am tired”, “Mommy my head hurts”.
It’s these simple words, this simple communication that I wish for my daughter and so much more. Simple communication is just the first of one of our goals. My heart hurts watching her trying to communicate with me. She gets so frustrated, you can tell the words are right there on the tip of her tongue but she just can’t get them out.
So with the question from her therapist echoing in my head… What is it that YOU want Cece to get from speech therapy? The simple answer I want to cry from the roof tops, the answer than seems so easy, so rudimentary….