Our Handsome Stubborn Perfectionist

When can we  officially say Cody has said his first words? Let me give you some history because it is not so simple. At around 16 months old, he had said Mama and Dada but that was only a hand full of times and then it stopped. We currently and have for a while heard BuBu what we are pretty sure is for brother but this too is not consistent.  Towards the end of 2015, vocalizations started to increase with a ton of sounds but no official words.  He was replacing a lot of his humming with ba ba ba, and ma ma ma and da da da, etc.  And then, we would hear these sounds given with eye contact in the right context basically when he needed something or was making a request. Then, randomly he started imitating a word you would say such as, “Ready, Again, Stop, Up or Go!”   But then days would go by and we would not hear them again.

Visualize this:  I am at the park and each time I am pushing the swing for Cody, I would say, “go, go, go, go, STOP!” As soon as I said stop and stopped the swing, he said ,”STOP!”  I then said yes Cody, “STOP” and then praised and gave him a high five because I was so excited!  While all this was happening there was another Mom right next to me pushing her 2 year old and her son kept saying, “higher mommy, higher! and then he would say, “weeble wobble” every time the toddler swing would push him forward in his seat.  Usually I would take this as an education moment and explain Cody’s autism and why I am doing all the talking to the mother but I was so stinkin excited I pulled him out of the swing to hug him and we quickly went over to the rock wall so I could continue to work on the word “up”!  Once you get the momentum, you want to continue with that opportunity!  These learning opportunities do not come as easy as you think!

So you can see when people ask us if Cody is talking or said any first words, we used to struggle answering the question.  Parenting for a  neurotypical child, I would often prepare myself each time Cameron would have his well check doctor appointment.  I would read and review the milestones he should be hitting before the visit to his pediatrician to make sure he is in the right percentile in his weight and height and that his developmental growth is where he should be based on his age.

Here’s where some of Cody’s peers are at today:

3 Years Old:

  • Expressive vocabulary of 800 words
  • Combining 4-6 words in phrases or sentences
  • Follows directions involving 2-3 objects (i.e. Get your coat and shoes)
  • Can answer simple questions (i.e. What do you do when you are tired?)
  • Others can understand most of child’s speech
  • Uses compound sentences with “and”
  • Beginning to ask questions (mostly “what” and “who”)
  • Uses “is, are, am” in sentences

3 1/2 Years Old:

  • Expressive vocabulary of 1,000-1,500 words
  • Others can understand most of child’s speech
  • Can hold long, detailed conversations
  • Can answer situational questions (i.e. What do you do when you are tired/sleepy/hungry?)
  • Asks “how, why, when” questions looking for detailed explanations

What Brad and I have now learned is it’s different and his milestones are different. Not less but DIFFERENT.  Here’s the thing:  We celebrate EVERY TIME we hear these sounds and spontaneous words even if it’s only one time every month!  We celebrate EVERY SMALL STEP because it is one step closer to Cody’s development.  We hear this statement a lot, “once you get a few words consistently with contingency, they all start flowing.” So even though it looks like Cody may be behind on development there is always the possibility that he could start saying sentences not just words once that one piece of the puzzle is connected.  He understands so much more than anyone realizes.  The therapists and I call Cody, “Our stubborn perfectionist.”

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When we started increasing the hours with ABA, Jessica and her team have made major strides. Not steps but strides.  And when we compare 6 months ago to now, we see the substantial progress.  These sounds may not be actual words yet but he says them when he has a need or wants what we refer to as a high reinforcer! (aka Elmo or a train)

We have heard that children with autism have been told that if their child isn’t speaking by age 4 or 5, he or she isn’t likely to ever do so.

Autism Speaks posted and article that said:

Some researchers have countered this view – citing cases of children who developed language during grade-school, or even adolescence. Today, a study of more than 500 children confirms those promising reports. It appears online today in the journal Pediatrics.

Scientists at the Center for Autism and Related Disorders, in Baltimore, looked at information on 535 children, ages 8 to 17, diagnosed with autism and with severe language delays at age 4. At age 4, their language delays ranged from not speaking at all to using single words or phrases without verbs.

The researchers found that, in fact, most of these children did go on to acquire language skills. Nearly half (47 percent) became fluent speakers. Over two-thirds (70 percent) could speak in simple phrases.

The researchers also wanted to see what factors might predict whether a severely language-delayed child with autism would eventually develop speech. They found that most of the children who did so had higher IQs (assessed with nonverbal tests) and lower social impairment. Somewhat surprisingly, the researchers found a child’s level of repetitive behaviors and restricted interests did not affect the likelihood of language development.

“These findings offer hope to parents that their language-delayed child will go on to develop speech in elementary school, or even as teenagers,” says Autism Speaks Chief Science Officer Geraldine Dawson, Ph.D. “By highlighting important predictors of language acquisition – especially the role of nonverbal cognitive and social skills – this also suggests that targeting these areas in early intervention will help to promote language.”

They also shared seven strategies for promoting language development in nonverbal children and adolescents with autism:

  1. Encourage play and social interaction.Children learn through play, and that includes learning language. Interactive play provides enjoyable opportunities for you and your child to communicate. Try a variety of games to find those your child enjoys. Also try playful activities that promote social interaction. Examples include singing, reciting nursery rhymes and gentle roughhousing. During your interactions, position yourself in front of your child and close to eye level – so it’s easier for your child to see and hear you.

  2. Imitate your child.Mimicking your child’s sounds and play behaviors will encourage more vocalizing and interaction. It also encourages your child to copy you and take turns. Make sure you imitate how your child is playing – so long as it’s a positive behavior. For example, when your child rolls a car, you roll a car. If he or she crashes the car, you crash yours too. But don’t imitate throwing the car!

  3. Focus on nonverbal communication.Gestures and eye contact can build a foundation for language. Encourage your child by modeling and responding these behaviors. Exaggerate your gestures. Use both your body and your voice when communicating – for example, by extending your hand to point when you say “look” and nodding your head when you say “yes.” Use gestures that are easy for your child to imitate. Examples include clapping, opening hands, reaching out arms, etc. Respond to your child’s gestures: When she looks at or points to a toy, hand it to her or take the cue for youto play with it. Similarly, point to a toy you want before picking it up.

  4. Leave “space” for your child to talk.It’s natural to feel the urge to fill in language when a child doesn’t immediately respond. But it’s so important to give your child lots of opportunities to communicate, even if he isn’t talking. When you ask a question or see that your child wants something, pause for several seconds while looking at him expectantly. Watch for any sound or body movement and respond promptly. The promptness of your response helps your child feel the power of communication.

  5. Simplify your language.Doing so helps your child follow what you’re saying. It also makes it easier for her to imitate your speech. If your child is nonverbal, try speaking mostly in single words. (If she’s playing with a ball, you say “ball” or “roll.”) If your child is speaking single words, up the ante. Speak in short phrases, such as “roll ball” or “throw ball.” Keep following this “one-up” rule: Generally use phrases with one more word than your child is using.

  6. Follow your child’s interests.Rather than interrupting your child’s focus, follow along with words. Using the one-up rule, narrate what your child is doing. If he’s playing with a shape sorter, you might say the word “in” when he puts a shape in its slot. You might say “shape” when he holds up the shape and “dump shapes” when he dumps them out to start over. By talking about what engages your child, you’ll help him learn the associated vocabulary.

  7. Consider assistive devices and visual supports. Assistive technologies and visual supports can do more than take the place of speech. They can foster its development. Examples include devices and apps with pictures that your child touches to produce words. On a simpler level, visual supports can include pictures and groups of pictures that your child can use to indicate requests and thoughts. For more guidance on using visual supports, see Autism Speaks ATN/AIR-P Visual Supports Tool Kit.

Your child’s therapists are uniquely qualified to help you select and use these and other strategies for encouraging language development. Tell the therapist about your successes as well as any difficulties you’re having. By working with your child’s intervention team, you can help provide the support your child needs to find his or her unique “voice.”

So, I wanted to end by saying, YES, Cody said his first words and we are proud to say his vocabulary seems to grow every day!  We work closely with our therapists along with 2 hours of parent training a week and we collaborate with our speech therapists and ABA therapists so we are all working toward the same goals.  This has been a great blend for Cody and like where his progress is going.

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Published by mamalamaneustupa

Bio My name is Shelley Neustupa. I am a mother of two cool boys and a wife of 22 years to my high school sweetheart. My oldest son attends the University of Oklahoma. Boomer! My youngest is in 2nd grade and was diagnosed with Autism and Mixed Receptive Expressive Disorder at age 2. Since his diagnosis, I promised him I would advocate and educate as hard as he works each day in therapy. I began writing and have been able to touch many parents that may be new to this journey providing them with actual experiences (not candy coated), support and resources through my entries. Writing is my therapy and my hope one day that my nonverbal son will be able to take these diaries and speak about his own journey and how autism relates to his own experiences. Who knows he and his older brother may become National Speaker’s one day? Come along on our journey to better understand our lives through the eyes of a boy with autism, his Skilled Companion dog Jude, his big brother (and best friend) and mom and dad. My raw vulnerability captures the everyday moments of our journey and will bring even more awareness. A week does not go by where we do not learn something new about ourselves and I want to share these chapters with you. My Sons Undeniable Strengths… Extremely smart and figures out things quickly. Has a memory that allows him to remember more things than I could ever hope for. Persuasive by his personality and sheepish looks. Overabundance of stamina and strength. Loves the outdoors. Enjoys life and always has fun with an unforgettable smile. You can find us here: Writer: Autism Through His Eyes Facebook Instagram YouTube Pinterest Canine Companions for Independence News Interview Cody and Skilled Companion Jude - Our Story

3 thoughts on “Our Handsome Stubborn Perfectionist

  1. It’s simply amazing to here all the progress, and the joy in your voices with each milestone reached! You all are a very special family and we are so blessed to learn about your journey and educate our kiddos from what we have learned from you!

    Liked by 1 person

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