I realize that some people are uncomfortable with the labels. Some are uncomfortable with the diagnosis. Discomfort, perhaps with time and additional information, may dissipate. Denial? Now, that’s another story.
I’ve often said that denying the truth doesn’t change the truth. You may not like the initial diagnosis; you may not even like the prospects of therapy or assistance or development challenges. You may not like it but you should deal with it. Denial only denies your child access to opportunities, resources, systems, and even services that could ultimately improve your child’s skills, development, performance, and future.
Personal approach, that’s what it really boils down to. What’s your personal approach to the situation? In the early months of the diagnosis, I researched the condition just enough to have lots of information that didn’t give me practical day-to-day steps. Once I discovered that what I needed wasn’t google-able, I then moved to the place of being able to say in layman’s terms what her diagnosis meant. I didn’t make excuses. I didn’t try to avoid the conversation. I simply would say “Well, you know, she was diagnosed PDD-NOS on the autism spectrum.” That usually opened the conversation with a tone of inquiry. The other person, usually knew very little about the condition so it allowed me to affirm her strengths: the creative arts, music, drama and then focus on how the condition manifests in our situation. “Since this is a spectrum disorder, each child can present with a variety of symptoms. For us, that means that she’s not comfortable with rapid change of transitions. Things need to be explained slowly and clearly and I usually say things 2 or 3 different ways to ensure that she understands.”
This deliberate approach to dealing with the situation allowed me to establish a dynamic based on learning and understanding. I shared the power of my knowing the diagnosis, and when people said “she will grow out of it”, I took the more realistic approach, “Yes. It is possible that with each phase of development there will be aspects that are outgrown but since the diagnosis is pervasive so there may always be things that are a challenge. Much of what we do is equip her with skills to communicate when something is a challenge or the tools to navigate the challenge.”
As the primary care giver, I can’t afford the luxury of denial. While I am processing the reality or even denying the reality, my child could be missing out on the benefits of direct, focused, and intentional involvement in her development activity. Time waits for no one. I choose to work for and toward solutions that enhance my child’s performance and development.
Don’t let denial rob you or your child of access to glimmers of hope and possibilities of future success that lie in the research, resources, tips, tools, and skills of gifted practitioners and early childhood intervention programs.
Since our diagnosis in 2005, there has been an increased awareness of the range of conditions on the autism spectrum. Today it’s referred to as a condition on the ASD - autism spectrum disorder. With that, comes access to services provided by the state and in some cases therapy that is covered by insurance. Today, we continue to receive support services at school and independent speech therapy. Turns out the independent speech therapy is covered by my insurance. Who knew? When we make our annual visits to the Kennedy Krieger Institute at Johns Hopkins, a significant portion of that care is also covered. The moral of the story: the label might be uncomfortable. The label, however, opens doors to resources that have begun to strengthen her skills and equip her for life.
This summer we've branched out to summer camp. She's developed enough language skills to function independently in the camp activities. The camp also offers a range of fun activities that complement her interests - drama, stepping, field trips, etiquette. All of these coupled with wonderful camp counselors who are aware of her challenges and groups of children in her age group have been helpful. She is finding her own way - sitting on the outskirts of the group far enough to be away from the madness but close enough to feel a part of the activity and participate in simple conversations about her coloring. Coloring is a place of solace and a sound coping technique. She can show off her work or share the book with others. The ability to develop her own coping strategies at camp have been refreshing, reassuring and moving.
I choose not to deny. I choose to locate and provide, as far as possible, services and activities that strengthen her sense of self and her ability to engage. Denial only denies support, affirmation, services and opportunities for success. She deserves more than that and I choose to give it to her.
Thursday, July 29, 2010
Original speech - less becomes more
We started speech therapy, part of the early intervention process, in 2006. An earlier post focused on me following the school bus as the 3 year old was taken to school. The more she participated in speech, the more fascinated I became with the whole concept of original speech. Just stop and think for a moment – you’ll discover that thoughts just pop into your head – some in words, some in pictures. Both are valid. If someone asked you to describe the pictures, you would first have to know what describe means. (I explain it as using your 5 senses to tell about something – what does it look like (see), does it make a noise (hear), etc. Your thoughts, put into words, generally tumble out in some form of original speech using language (which as we know from an earlier post includes content, form, and use).
As I listened to my daughter’s speech, I realized two things – (1) it was quite unintelligible (rate of speech and articulation) and (2) it was mostly snipets of movies or TV programs (non original speech). Much of what she produced I had to determine what movie, program or event it came from. Using that knowledge, I could either decipher quickly what she was saying or ask enough questions to determine the intended content/meaning. At first, the echolalia, repeating what someone says, was frustrating. Once I understood that it was part of the speech glitch, I had to be creative. I recommend that you find a good speech therapist. They have wonderfully creative techniques for pairing language with movement and building speech skills.
I remember one time we simply stood in a circle and greeted each other as we tossed a ball. You know that exchange when you greet someone with “Hello….”. You say their name and then they say your name. You have to understand Using a ball, we simply tossed the ball and used the language at the same time. Don’t ask me how it works (ask your speech therapist) but she eventually understood the sequence and what needed to be said. Fast forward now about 4 years. At Christmas, I asked what she wanted for dinner and she replied “I haven’t decided yet”. Now, it’s true that she could have heard this in a movie or TV program. However, I could tell the difference by the intonation. Echolalia came with the flat tone. Original speech, in our case, had the right intonation that communicated her meaning and intent. She was present in the communication. It was not a repetition of something she had heard and was dropping into a conversation. This was original speech.
As you listen to yourself or your child speak, see if you can detect the differences between record playback (automatic speech) and the fluid, easy going tone of original speech. I learned to listen to my daughter’s speech so that I can check if she is simply repeating something or producing her own original speech. As her skills develop, conversations are sprinkled with her own thoughts "Well, I want to do _____ because it makes me feel happy". Or, you get the funny ones where she doesn’t have the words to really explain what she means so she uses words she knows, they are incorrect, but that’s a really good sign that what she’s producing is original speech. It may be grammatically incorrect and have odd words, but it is original.
Today, almost five years into therapy, I hear with joy more original speech. At camp drop off yesterday she said, "Don't you have to go to work?" Yippee!!! Yes, occasionally I still hear snippets of movies and TV programs. It's part of the condition. They are able to recall details like a movie reel. We still have to practice how some exchanges should go for example when someone is mean to you; when you are frustrated. Hopefully with time, those coping skills and language to support coping will come, if not naturally, a little more easily. For today, I enjoy hearing "Mom, shhh, you're too loud. I can't hear the TV."
As I listened to my daughter’s speech, I realized two things – (1) it was quite unintelligible (rate of speech and articulation) and (2) it was mostly snipets of movies or TV programs (non original speech). Much of what she produced I had to determine what movie, program or event it came from. Using that knowledge, I could either decipher quickly what she was saying or ask enough questions to determine the intended content/meaning. At first, the echolalia, repeating what someone says, was frustrating. Once I understood that it was part of the speech glitch, I had to be creative. I recommend that you find a good speech therapist. They have wonderfully creative techniques for pairing language with movement and building speech skills.
I remember one time we simply stood in a circle and greeted each other as we tossed a ball. You know that exchange when you greet someone with “Hello….”. You say their name and then they say your name. You have to understand Using a ball, we simply tossed the ball and used the language at the same time. Don’t ask me how it works (ask your speech therapist) but she eventually understood the sequence and what needed to be said. Fast forward now about 4 years. At Christmas, I asked what she wanted for dinner and she replied “I haven’t decided yet”. Now, it’s true that she could have heard this in a movie or TV program. However, I could tell the difference by the intonation. Echolalia came with the flat tone. Original speech, in our case, had the right intonation that communicated her meaning and intent. She was present in the communication. It was not a repetition of something she had heard and was dropping into a conversation. This was original speech.
As you listen to yourself or your child speak, see if you can detect the differences between record playback (automatic speech) and the fluid, easy going tone of original speech. I learned to listen to my daughter’s speech so that I can check if she is simply repeating something or producing her own original speech. As her skills develop, conversations are sprinkled with her own thoughts "Well, I want to do _____ because it makes me feel happy". Or, you get the funny ones where she doesn’t have the words to really explain what she means so she uses words she knows, they are incorrect, but that’s a really good sign that what she’s producing is original speech. It may be grammatically incorrect and have odd words, but it is original.
Today, almost five years into therapy, I hear with joy more original speech. At camp drop off yesterday she said, "Don't you have to go to work?" Yippee!!! Yes, occasionally I still hear snippets of movies and TV programs. It's part of the condition. They are able to recall details like a movie reel. We still have to practice how some exchanges should go for example when someone is mean to you; when you are frustrated. Hopefully with time, those coping skills and language to support coping will come, if not naturally, a little more easily. For today, I enjoy hearing "Mom, shhh, you're too loud. I can't hear the TV."
That's original speech and less has finally become more.
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