Cure vs. Care

Often, in the discussion of Autism and Autism Spectrum Disorders, parents focus on curing the condition. As a family member of a child on the Autism Spectrum, I too would love to see an end to the condition but the timing of such a cure is well beyond our control. What do we do in the meantime?

While we are waiting and hoping for a cure, we have to be mindful that we cannot wait to help our children. We need to come up with strategies to help our children grow and flourish today.  Many of parents will join various support groups where the talk is focused primarily on dietary supplements and dietary adjustments which are entirely valid approaches to dealing with this disorder. My feeling is that we need to consider marrying those approaches with aggressive interventions in the area of our children's academic and social development. That is as important if not more so, in my humble opinion, than the dietary changes.


I'm sure many parents are already working in this area, but so little is written about it that I thought to put it out there explicitly. A cure may one day be available to us, but in the meantime, we must prepare our children to be contributing members of society and to do that, they must be well-prepared for every grade and every challenge the education system will throw at them. More than this, by helping them to perform better we limit the number of situations that frustrate them and bring out less than stellar behavior. Academic success will feed your child's self esteem and who wouldn't want that?

In this case

There's very little that is truly well understood about Autism and Autism Spectrum Disorders.  In spite of that though, there is one thing that we in our family understand: if you keep throwing things at the condition (not in a wild and unconsidered way, but sensibly), there will be results.

Take for example the following conversation that occurred between my niece (age 8) and my sister this weekend.  She says, "Guy Fieri is dreamy".  Her mother says, "Dreamy?" She, "You don't know what 'dreamy' means?" Her mother, "Uh, no". She replied, "In this case, it means he's handsome".  OK then.  If you say so.

This is probably a typical 8 year old girl conversation.  Or maybe it isn't.  I can't remember that far back myself so I couldn't tell you if I was having this kind of conversation at 8.  What I do know is this, without throwing everything but the kitchen sink at this condition, we might never have got here.

J has had music 'therapy' from age 0.  I like opera so she's had to listen to that and there's enough music in this house to launch a battle ship.  She's had speech therapy from age 3, ballet 'therapy' from age 5, piano 'therapy' from age 5,  She has self confidence (which enables her to speak her mind) not because she's this great speaker, but because there are things that she knows she can do. Somewhere deep within she's probably figured out (or been told a few hundred times), if you practice you will get better.  So she practices her piano, her ballet and her speech.  It's all of a piece: practice makes perfect.

As Rozella Stewart writes in her article, "Motivating Students Who Have Autism Spectrum Disorders" on the Indiana Resource Center for Autism website (link provided below), "[w]ith successful experiences, each [child] can become a victor who lives, works, and plays in the community [emphasis added]. It is difficult, at least in part, because people who have autism are particularly vulnerable to key factors which impact motivation."  One significant motivator is self-confidence.

My sister's approach, hardly stress-tested or supported by reams of empirical data, has been to expose J to things that she could conquer.  Does it help that she's a gifted singer?  Probably.  Does it help that she can now play the piano? Probably.  Does it help that shes loves and is good at ballet? Probably.  But the reality is that every child on the spectrum has things that he/she would love to do and will do well, because of that passion.  The challenge is to find those activities and allow the child to excel.  Success breeds success.  I might even add that effortful success breeds more effort.

So do as my sister did, throw everything but the kitchen sink at the condition.  One day, maybe they'll all be able to say, "In this case, it means he's handsome", or something equally impressive.  This was almost as good as two weeks ago, when she refused a bracelet in a store because, said she, "It's not my style."  Oh ho. So you have words and style too?  Note to self: watch this one. She is not easy. 

"When diligently applied, proactive strategies often prove successful in eventually eliciting positive, productive responses and pride in personal accomplishment".  So says Ms. Stewart and she is absolutely right. So, apply diligently starting today.  Something will happen and it will have been your gift to your child.

http://www.iidc.indiana.edu/?pageId=430

How far back do you remember?

Here's the question: if they're unable to communicate, does it mean that they're not experiencing things or unable to record or recall things they've experienced?  Hmmm.

On our way home recently, she asked about my college ring.  I explained that it was a sign that I had graduated from a university.  She asked, "Was that the time when you wore the blue dress and the hat?  Did the man say your name and then you bowed?  Did I speak?"  She's right - that is exactly what happened Mother's Day 2006 - hooding ceremony for the Ph. D. graduation.  She was only 3 years and 8 months.  She had just been diagnosed.  And yes, she was not speaking yet....how did she know to ask that question?  I wonder what she meant.

In 2006, she was still easily having meltdowns - in fact, she had one when I tried to send the family to get seated while I stayed with the graduating students.  Therapy had only just begun and she was just learning some basic concepts...including some words.  What made her aware that she was not speaking?

Screamed and hollered...hair tore up and  a hot mess, shoes gone flying.  I eventually asked to be allowed to sit on the side with my child.  She got calm and so, when it was almost time for me to be called, I had my sister take her to the back of the room where she could look directly at the stage and see me as I was hooded.  Brings tears to my eyes now to know that as I ensured she participate in the experience, she was recording it in her mind.  Now, 4 years later, with speech developing, not only can she recall the events, she also seems to have some kind of assessment about the event.  Will have to probe further as her self-awareness and language skills develop.

Again I ask - how far back do you remember?  We laugh when children say 'when I was little'...clearly they do have vivid memories of events that occurred even when they were little.  While speech has been slow in developing, while some facts of cognition have been impacted by the speech delay, the computer of the mind has been recording images and experiences and saving them for the day when self-awareness and language skills meet to create the most joyous of gifts - the gift of shared memories of a special day when she was only 3.5 years old - Mother's Day & graduation day.

Treat them well even as they seek to understand themselves and the universe; as they struggle with the challenges of speech, language, cognition, development of all kinds...they remember how we received them and treated them.  Unlike an old tape, their memories may not be erasable. Give them great stuff that will warm their hearts when they replay the images!

Executive functioning in action

Summer was delightful.  Now it's time to start the new school year.  This year, I tried something different - I prepared something for the new teacher.  Great transition tool - she loved it; she shared it with another teacher; and the Special Ed teachers plan to use it with other children. 

For every gain that we make either in learning new words, getting comfortable with new and different groups, there will often be something that you couldn't anticipate.  That's the nature of PDD-NOS (it's a pervasive disorder so it could manifest anywhere at any time).  For us, the transition to the new class was good - some students we new from last year and the year before.  The desks, chairs, and classroom routines are pretty much the same.  So what's different, you ask?  The executive functioning deficits become apparent in little things like packing the right tools and resources to complete the homework.

Executive functioning (EF) capabilities are the  skills to manage yourself and your activities.  EF includes organizational skills, managing time & routine, and organizing work/task steps.

Writing down the homework is easy - teacher says it out loud; you write it down.  The children may be left on their own to remember/realize that worksheets related to the homework are to be packed in the book bag.    We are recording the homework on a sheet of paper - helpful.

At the pre-school level, they put everything in the folder for you.  In kindergarten, they put the stuff in the folders for you.  First grade, they give you a special book to record homework and they have a method for getting things into your folder to go home.  So far, in 2nd grade, it appears they expect the students to develop independence and responsibility for doing these things....not working if the underlying capacity to do that is part of your ASD diagnosis.

She was so proud that she had written down the homework.  I was relieved.  Along with the pride though, came her distress when she realized that the reading journal for my signature had been forgotten.  That was my second day of school, high point and low point in one swoop! 

Transitioning to a new grade is more than getting comfortable with the teacher - it also involves getting familiar with the routines AND understanding the unspoken expectations associated with the new grade.  

Do I call another parent or child every day to confirm that we have the right homework?  How do I support her organization skills deficit from my office 20 miles away when school is letting out in the early afternoon?  Do I expect the teacher to remind her daily what she should take home?   

Partnering with the SpEd staff will allow us to determine the most effective method to compensate for those EF skill deficits. We can never plan for everything but we do have a sense of how to plan and what data we must use to make an effective plan.  Those are the hidden skills of transitioning to a new grade - the executive functioning skills - that we sometimes take for granted with normally developing children.  

Knowing words, being able to answer questions, ask questions are all critical aspects of speech & language development.    Knowing how to get organized is a hidden skill that, if left unchecked, can undermine the ability to access the curriculum and perform well in the new classroom environment.

Each transition brings new triumphs, challenges, and insights.  This year, so far, it's how to develop 2nd grade organization skills.  Executive functioning in action means not only recording the homework, but also taking the appropriate resources home to complete the assignment.  

How I spent my summer...

Can I just say that this summer was a BLAST!!!  We did camp at the university, an exceptional program with academics three days a week, lots of field trips and an opportunity to develop/practice social skills with other children and counselors.  She loved the experience.  I think she believes the university is her other school. 

Remember when you had to write the dreaded "How I spent my summer" essay?  Well here's how we spent ours.  First, we made time/found time to review the entire math curriculum - speed addition and subtraction twice a week (3 minutes for each).  It really is not as difficult as it sounds.  Once I figured out what I wanted to work on for the summer, I simply located the resources, made my tracking sheet and kept a log of what we did.  Next, and I think this is a pretty novel idea, we added field trips that were tied to the math, science, or social studies content.  There's so much we can really do to complement our children's learning & development - I wish they would have given me a handbook.  I believe that parents who want to do more would probably do more if they only knew what to do.

I'm figuring it out and creating new things as I go.  My most successful creations for this summer were - field trips that supported science and social studies; introductions to science experiments; and the speed math.  In fact, the speed math was not my idea - I saw a camp counselor doing it with the rising 1st graders.  They were reducing the time each week - started at 2 minutes and working their way back.  WOW!!!

Summer is a time for fun -  It's painful to watch adults who suspended learning early in life and now are struggling to find job alternatives.  The facts we learn in science come to life in the museum, when we take a walk, even on the animal channels.

Childhood is about memories...for us, this summer was about creating memories that we could enjoy as fun and draw from as we advance to a new grade.  So how did I spend my summer?  Reacquainting myself with 1st grade science and social studies and finding real world activities and experiences that made the content and the skills (map reading, understanding diagrams etc.) meaningful.

Along the way, we played with Legos, learned about constructing a building, looked at the weater, were amazed by animals at the museum and enthralled by the first flag as we listened to the Star Spangled Banner at the museum.  I know how I spent my summer.  How about you?  Your turn to write "How I spent my summer......."

Necessity is the mother of...

I am the least creative parent on the planet. All that arts and crafts, nifty ideas stuff does not flow from this head. And, when I find arts and crafts and other things to make, it must be easy to read and do. (I’m not the one for assembling presents either).

When you have daily contact with your child, you really don’t know what progress they’re making or how they are slipping behind. I discovered the latter one Sunday as she participated in the children’s message. The language was just soooo complicated. Questions were whizzing by and she had this blank look on her face. I realized that much of the verbal noise (speech) was just sailing over her head and I couldn’t translate for her. The challenge was to find a Sunday school environment that met our needs – visual aids, manipulatives, simple language, music. Seems simple enough – not.

Non-creative mom that I am, I went looking for materials that met all of those needs. Yippeee!  I found them. An area religious store carried a range of books for preschool and kindergarten Sunday school classes. I purchased three items that were very helpful – Read and See DVD Bible, narrated by Max Luxcado and others; Easy Christian Crafts – bible stories through simple arts & crafts activities; Bible Stories to Color & Tell – great reproducible activities to make and color; Big Book of Bible Story Art Activities – stories in simple English with relevant creative activities.  The biggest hit for the child: the DVD Bible. It had pictures, simple language, and songs. Moreover, the words for the song appeared on the screen so she could learn to ‘read’ while she sang the songs.

The biggest hit for the non creative parent – Bible Stories to Color & Tell. This book made working with her in a medium that she understood very easy.  There was no frustration for me, even less for her.    So, I had to make a change – my church didn’t have the Sunday school environment that would be helpful to my child so I had to find one that did. We’ve been doing Sunday school at another church for two years – the class is medium size, there are several teachers, they have worked with children on the Autism spectrum, they sing AND for major religious events there is a children’s program. The last item is important because it allows her to see, hear, feel, and experience her learning through the dramatic arts. Creative and visual arts are a critical medium for learning and self expression for many children on the spectrum.

Making Resources: I said I’m not creative so I make no excuses for the homemade resources that I produce. They may not have the glossy, hi-tech finish but they work!!! Early childhood learning involves a range of concepts – shape, size, position, questions (to ask and to answer), numbers, letters – and that’s just the ones I remember off the top of my head. So, when faced with the challenge of understanding the difference between big and little, I used things around the house. I used a picnic basket and I filled it with items from the real kitchen and the toy kitchen.

The BIG and LITTLE basket: egg carton (real and toy); plate, cup, can, milk carton, spoon. The basket simply sat in a corner until we were certain that she understood the concept. Occasionally, we’d take the signs out (big – little) and have her sort the items in the basket. Or, I’d say “can you find the little can?” “can you find the big can?”. There’s enough information about manipulatives and learning. I made mine as I needed them. There’s a sense of accomplishment when you create something and it serves as a learning resource.

Working with ASD children requires patience, gentleness, creativity and resourcefulness. In order to support your child’s learning and development, you may find it necessary to make your own resources and make changes to some of your routines.  Even as we prepare for 2nd grade, there is still a need to develop new resources.  I'm a little anxious about the 2nd grade science fair (Science FEAR I call it).  The whole notion of scientific thinking, creating a science fair project and explaining it, scares me.  Can we just say, I didn't like science so how am I supposed to help my child?

 

Science and science fair prep:  So what do I do? We're practicing asking questions.  I've found some $1.00 resources from Creative Learning Creations, LLC.  They even have a science fair projects resource that is quite nice.  They give you a fact - teach you some science vocab.  Give you steps to follow (helps build understanding about how to approach science) and finally you get to draw pictures of before and after.  That's a resource I bought - the resources to support Science review, geography, history, and social studies - those I created.  I'm so proud of them.  They're simple but effective and that's the whole point - they have to be effective. 

 

So take a look at the resources that exist.  If they don't help you, figure out what the learning need is and if you can make your own.  (Or, find someone who can design learning resources). 

 

Necessity is the mother of invention.

Spending $$ and building skills

Every parent buys learning resources of one kind or another for their child. In the early years (ages 0 – 3), I spent money on toys. Then as we moved to preK3, preK4, I started spending money on books as supplements to our work at home. Let’s be real, for all the technology that exists books still, and probably always will, play a pivotal role in developing a child’s mind. I’ve talked about the ‘don’t read to me’ situation (Why are you reading to me?). Books, though, aren’t only the place where we learn about print as a means of communication. Books also are a source of information and in the early years, ages 3 to 5, books can play an instrumental role in developing skills in a range of areas.

Picture your child reading (or pretending to read which is just as powerful). That reading activity provides development opportunities for building gross motor skills: turning board book pages, coloring pictures, handling books in general, following words with fingers. Fine motor skills are also developed when we move to paper books and learn how to get those pages turned without tearing the paper. Ayyy! Reading is also the doorway to literacy skills – introduction to print, print as a representation of words, words as a representation of thoughts, actions, events and ultimately, the world around you.

So when I spent $ on resources and they did not meet my needs (or my daughter’s needs), I had to figure out what was missing. What did the resource need to say or do differently to develop those critical pre-literacy skills?  I kept buying different titles and still finding gaps in the teaching.  The spending wasn't helping my situation.

The answer came – make your own. I realized quickly that my professional training as an instructional designer equipped me to identify the sub steps in learning and understanding early childhood concepts (ECC).  Thus, although I was still spending $$ on the resources, now I was redesigning and ‘cutting and pasting’ learning steps, moving things around, adding and rewording, creating content or critical stepping stones to facilitate learning.

There are lots of great resources available. There are also lots of mediocre resources that we could easily spend $ on and only later discover “ugh, this really is no help to me”.  Most times, by the time you make that discovery, you’ve either written your name, a date or done a few pages and it’s too late to return the product.

$ saving tip: Before you buy, figure out what your child needs to learn, where they are having difficulty AND THEN google the resource or flip through the pages before you spend your hard-earned $$$. I spent about $145.00 for learning resources to support preK skill development. That may not sound like a lot however if you consider that preschool is PRE the whole 13-year educational adventure, those $$$$  on resources at each grade level or content area will add up.

$ saving tip: whenever possible, locate the resource at Amazon.com. If you’re lucky, the book will come with the ‘search inside’ icon.  This is a real help. You get the table of contents, a few choice pages that can help you determine if the resource provides the topic treatment that suits your needs. In a future post, I’ll talk about how I evaluated the likely usefulness and effectiveness of some resources.   Working for academic success is a good thing.  Spending $$$ on poor or ineffective resources is not.

Here’s one product manufacturer I really like.  It's from Evan Moor.  It's the “Take it to your seat Early Learning Centers”.  This was a BIG hit and GREAT success in my household.  The price was a little steep but it was well worth the money. It's best features were the vibrant colors, clear instructions for each activity, and its focus on a few specific early childhood concepts at a time.  Too many books try to cover everything and the result is poor coverage of many things rather than great coverage of a few things.  http://www.evan-moor.com/

Making the bags was as much fun as using the bags. They’re easy to store. We both had fun cutting and sticking (both necessary pre-school skills). The activities included nursery rhymes, creating patterns, visual discrimination. Lots of fun, lots of color, lots of learning! This resource is a 5-star pick for me.

I’m committed to spending my $$$ wisely on GOOD resources to complement and supplement my child’s academic success. How about you?

I'm willing to spend $$$ on camp, activities, and learning resources once they help to build skills.

Why? Not

You know that baseball joke about who’s on first? They go through all of the 'wh' questions. In speech development, there is a sequence that children should begin to understand (receptive language) and produce (expressive language). That sequence involves all those 'wh' questions.

Children ask lots of why questions and that’s because they’re supposed to. It’s a natural part of their language development. It’s how they make sense of the universe.  They arrived with no clothes and a blank slate for you to fill. Just think how much attention we pay to making sure they have clothes to wear and a special outfit to go home from the hospital. We need to pay the same kind of attention to the language and thinking skills we equip them with. Our first why question came at 4 years 4 months – a little beyond the normal development milestone. Yes, each child develops at his/her own pace. But, when the pacing is off, that could signal a problem.

There are many phrases in speech and language development. The ‘why’ stage is one of the more commonly known phases. Some parents laugh at the fact that their children are driving them crazy with why questions. This phase can be frustrating since the questions range from simple things to some complex concepts that make you scratch your head. 

How many times can a child ask why? I wouldn’t know since my universe was why-less. You could say I had "No 'why'" phase.  There really wasn't a 'why' phase. The one question I heard was ‘why are they taking pictures?’ That was it. Perhaps as development continues she will develop an understanding of the purpose of the why question. (Answering why questions is still a challenge.  What does 'why' mean anyway?)

Again, if you’ve been around normally developing children you would probably know that phase and certainly miss it if it didn’t show up. In our case, the 2 – 3 age was filled with lots of words, some degree of unintelligible speech but no awareness on my part that the language development should have been at the place where the ‘annoying’ or ‘frustrating’ why question was a regular occurrence.

Somewhere in my searching and accessing resources that were informative, I found a milestone guide about asking and answering questions. Who knew? Who knew that there were specific stages at which children developed the ability to ask some 'wh' questions and answer others? The reality is that with each research study on the brain, language, speech & language development, early intervention, and other areas of thought, we learn more that is helpful.  There’s a lot the researchers know; there’s a whole lot yet to be uncovered.  The researchers might have known these things, but no one had told me.

Here’s another question to ponder: why isn’t there one place that serves as a link or hub to other PDD-NOS speech language information that could ease some of the parents’ frustrations? If there is such a place, I haven’t found it yet. However, I’ve decided to answer that question for myself. As I find new, helpful resources for each phase of this journey, I’ll post them on the blog. Why? Perhaps because I’ve endured the land of "No 'why'".

I’d like others who walk this PDD-NOS journey to have better light on the road. Where I had blind spots - language development milestones, for example - those coming after us should not have to face the same confusion. The more you know, the better you can be at taking a proactive step to anticipate, equip, or simply support your child’s language development.

In years to come, parents of all children will know more about the development stages of language because we who have struggled with it, have shared what we know. All children can benefit from some of the tips, techniques, and resources that have been created for children with speech delays. If there are resources that can help them, why would we want to share them with children who have no language development challenge? The real question is: why not? We don’t know which aspects of language development are as challenging for children with normally developing speech as they are for those with speech delays.  Share what we know and we might all be better off for it. Why? Why not?

Denial only denies them support

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.

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."

That's original speech and less has finally become more.

Picture this (PCS in action)

Here’s one way we got started on our journey to speech stimulation and development: PCS – picture communication system. I found the nearest education store and spent hours just looking at what was available. In another post we’ll talk about how not to go overboard with the spending. You know when you want to find stuff that will help and you pick up one of everything? Then you discover some of it just doesn’t work for you? Been there, done that. Will sell the tee-shirt soon.

Anyway, I found this delightful set of flash cards. The pictures are vibrant. Nice colors and you get simple introduction to the concepts. Naming words – hat, chair, spoon. Action words – run, jump, skip, walk. Remember, the child is a blank slate. Who decided that run was the word for moving the legs one way and walk was the word for moving the same legs differently? Doesn’t really matter who decided. The real issue is that my child, with a speech delay, needed to see these actions in pictures so that she could comprehend the distinction between the meaning of the WALK word and the RUN word. So, here are the pictures from my box of flash cards – brand name TREND.

The box came with a host of action words which I simply put all around the house. Kitchen still has - cook, bake, wash on the stove, oven, dishwasher respectively. Front door has the lock and bathroom has wash, brush (teeth). As you can see, it takes a little work but once you’ve done it once, they just stay there doing their thing. The flash cards posted here were used in the basement since we used the basement door to go outside. These are many of the things you could do outside. Inside and outside were equally challenging. What is ‘inside’? And who decided that outside was outside? With each new concept, I had to be creative and as another blogger (Woozle) says – patient. The biggest part of this journey for me has been developing patience and detective skills to determine what’s the missing piece of the puzzle for her.

And what about all of those things that we say, routinely, and assume that they have meaning. Good morning. Good night. It’s bedtime. Yup.  I created my own flashcards for these concepts. Look, the research and the educational product market is just catching up but the number of things we need, I certainly would go bankrupt if I bought everything that they made. Making some things for myself gave me a sense of involvement.  I’m doing this as my gift 2 my child. I could just as easily buy them but there’s a sense of joy, fulfillment, satisfaction – like baking bread or rebuilding a car – this is the work of my hands coming from my heart for the child of my heart.

I found a picture dictionary – there are lots of really good ones. Then I simply selected the pictures that I needed and copied them. Cut. Paste. And voila – my own flash card.  You can do the same.

Greetings came to life once I had the homemade flash cards. Four years after I created these, you can now find more photos created into flash cards. That’s what speech therapists have been using. Now they are available for purchase…I can’t afford to buy everything and there’s a lot to learn. This is just the beginning.  You’ll have to decide which things you will make (or even have friends and family make for you). Some things you buy, some things you make. Picture this – you need pictures to stimulate language development – some concepts are easier than others. Some take longer to grasp than others. My challenge was to make them as I needed – most times I didn’t figure out what I needed in advance but once I knew what I needed to make, the rest was easy.

Made it myself tip: Locate a good education store or office supplies store. Acquire some basic supplies: glue stick, markers, flash cards (pre-printed and blank), scissors, push pins, double-sided tape. With these basic supplies, you can make your own flash cards from pre-school up. I’m still making flash cards in 1st grade. They provide simple manipulatives that help her acquire, manipulate language and language concepts. Try it and see if it works for you.

Picture this – PCS (picture communication system) - either the official version or your own homemade version is a great way to introduce your child (with or without a speech delay) to language and language concepts. A picture really was worth a thousand words.  The pictures got us off to a helpful start and we are better off for having tried them.

Seen and Unseen (development milestones)

Remember when it was almost time for the baby to arrive? The doctor went through the delivery process including the APGAR score (appearance, pulse, grimace, activity, respiration). You knew what to expect. You were probably also advised about what action the doctor would take if the score was low. Then they sent you home with the baby – no book, no notes, no tip sheet. Some things we know from common sense. Other things we’ve learned from the experiences of our parents, friends, colleagues and the abundance of literature out there.


The baby had 10 fingers and 10 toes. She ate; she cried; she pooped. Things looked good. What I didn’t know was that there was growth and development that could be seen and growth and development that was unseen. Physical development – is obvious and seen. Cognitive and Emotional development – they are actually happening as well. Perhaps the more enlightened parent knows what those facets look like. Sometimes, though, you’re so consumed by the daily routine and the visible signs of development, you forget that there is unseen development at work.


The good news is that with the internet and the explosion of information, there are many more accessible resources that give you robust information. I recently found two sites that I wish I had seen in those early years. While I was focused on feedings, gross motor skills, crawling, walking, and the other seen signs of development, I was unaware of the subtle signs of unseen development - in the cognitive and emotional arenas. Good news was – I have a great pediatrician. With each visit, I learned something new about the seen and unseen development milestones that my daughter was being measured against.


Lesson learned – they can’t give you all the information about every aspect of a baby's development as there is growth that is seen and unseen, known and unknown even to the scientists.


The same is true of the speech – language and cognitive development. Saying words is the starting point of the journey. The first words let you know that they have the equipment to produce the sounds and they can hear and imitate. At 2 yrs she knew over 100 words but at 3 the speech was still unintelligible. Once we visited Kennedy Krieger Institute for our developmental testing, I discovered the range of unseen skills that should have been developing.


While I wish the answers to the cure and cause question were available, I am grateful for all of the speech–language pathologists and practitioners who can administer the tests and clue me in to what is happening developmentally and what should be happening. The ability to name action and agent (what flies, runs, bites); the ability to draw a picture; the ability to repeat a sentence or the ability to repeat a string of numbers - these are just some of the tasks in the assessment that tell the practitioner what cognitive strengths and challenges we face. You can’t study for these assessments.  You have to be developing with the right stimulation, experiences, or professional guidance.
 

Enjoy your child’s development.  Remember, however, that while you can’t see what’s happening in the brain something should be happening. If your child is normally developing then the notion of seen and unseen development perhaps didn’t even register for you. For me, once I discovered that weight, height and knowing 100+ words weren’t enough of an indication of development, I wanted to know more about the seen and unseen development that should be occurring. Check out these websites if you’re interested in learning more about the development phases of children. They are just milestones but they are a guide that can be helpful to parents who want to know what should come next.


Development milestones

PBS child development tracker

If your child isn't growing (weight or height), you would want to know what you could do.  Same goes for developing speech, language, and thinking skills.  If there's a delay, you should learn what it is and what you can do to address it.  Weight and height are development milestones that you can see easily.  There are other areas of development that are unseen but these also deserve your attention and support.  Development includes aspects that are both seen and unseen.  Visible or not, all aspects need our nurturing.

Why are you reading to me?

In recent years, they have translated the research findings into practical help tips for parents. We’ve all heard the familiar ‘reading is fundamental’ and read to your child every night guidance. I heard the public service announcements about reading to your child and even the information package that came from my chosen baby formula. Of course, I wanted my child to be off to a good start so I too read every night.

Then, at some point, perhaps between 18 months and 24 months, I distinctly remember her losing interest in the reading activity. I ignored it briefly and kept up the routine but then it became clearer that there was absolutely no interest. That however, was followed by the “I’ll turn pages and read to myself” phase. Again, with no desk reference or google option, I had no idea what that was about. Sometimes we get cues and clues that something could be amiss. Sometimes it’s not a clue it is a real development phase – developing independence and a love of reading - “Why are you reading to me? I can do it myself.” (Some things have deep meaning; some have little meaning. Pray that you’ll be on guard to recognize the difference.)

Fast forward 3 years: Between the Lions on PBS is a highly rated and nationally recognized reading program. If there was ever a program that facilitated this visual thinker’s understanding of the reading process – this was it!! We had been watching every morning since she was 8 – 9 months. In the early days, it was the sound of the different voices and the lions that seemed to enthrall her. As she got older, some of the books she heard at school were also featured on the program. Abiyoyo was one such. I won’t forget the absolute delight on her face when she saw the book at the library. Now, it was, "Read this one to me!!"

During her first year of pre-school,  they wore hats of every kind in honor of Dr. Seuss' birthday. Though the speech was still limited, it was clear from her eyes and excitement, she enjoyed the book [The Cat in the Hat] and the idea of wearing a hat to school was fun. With her love of song and music, we created a Sound of Music hat that featured music notes and other elements that she loved from the movie.

In her second year of pre-school, while others were learning the letter names and sounds, she was already reading simple words. We were fortunate. The earlier disinterest in reading was replaced by an earnest love for reading.  I didn’t have to push her to read – didn’t have to force the reading activity. It was something that she wanted to do. Now, the reading activity was voluntary, full of enthusiasm, and shared. By the time we got to the second year of pre-school, she was 4+ and could read basic CVC words (consonant vowel consonant).

That was quickly and seemingly ludicrously followed by this inexplicable ability to READ and decode words like crazy. I remember going to the kindergarten classroom where we saw the bright poster with the classroom rules. At 5+, she was among the oldest in the class, but she could read the whole poster. I heard a parent behind us whisper “she read that whole thing”. Again, with no manual for a reference point, I didn’t realize that she was reading well above grade level. Development is a process with ups – downs – highs – lows – and plateaus.

So my lesson learned, she went through a phase where reading to her held no interest. Perhaps her inability to understand the words and a need for good visuals made the activity difficult. Whatever the reason, that phase was followed by a desire to read, learning to read from Between the Lions, reading CVC (consonant vowel consonant - CAT) words at 4+, full sentences at 5+, and at the 2nd grade level at the beginning of 1st grade.

But let’s not get too excited,  reading is made up of multiple skills and phases. Identifying the letters and sounds is just the beginning. There’s also the business of comprehending – we’ll talk about that discovery in another blog. With gentle prodding and external stimulus such as library visits, good PBS programming like Between the Lions, and quiet patience, the ‘why are you reading to me?’ phase has turned into a love of reading and words. The cognitive challenges associated with reading I’ll tackle in a future post.

Reading is not only fun, it REALLY is fundamental.  Accessing the content in the curriculum, even at 1st grade requires the ability to identify the letters, read the words, follow the instructions, and complete the tasks assigned.  If you find yourself in the 'why are you reading to me?' phase - give it some time - not too much - try different types of reading material.  Ask your librarian.  He/she will know the various levels of the reading material.  You want to develop and build interest - not create anxiety and dislike for the one skill that will open (or close) doors throughout life.

April is Autism Awareness Month

April is Autism Awareness month.  My commitment to myself, my child, and others on this Autism Spectrum Disorder (ASD) journey is to start posting more regularly.  But more than that, while the scientists and the dietitians work on causes and cures, I continue to work on supporting academic success and cognitive development.

Going forward I won't only talk about the challenges and triumphs of the journey.  I've learned alot about language and language development.  Oh, there's a whole lot more to know and I leave that to the speech language pathologists and academics who will do research on how the brain works etc.  While they do that, I still have to support my child as she navigates the academic demands of school  Inclusion works for us but there's stuff that I have to do to ensure success and minimal frustration (parent, child, and teacher).  To that end, I'll start sharing some of the tips and techniques we used to learn some of the obvious stuff that just wasn't obvious to us.

With an undergraduate degree in linguistics, I know the basic elements of language, how English came to its present form.  I even know something about the history of the Spanish language.  Then there's all those years I spend in graduate school learning how to design, develop, and create instructional programs.  Who knew that there would come a point in my life when the two would come together for a purpose outside of my job?  Well, that time has come.
 
In order to support her learning, I had to (1) understand what she needed to learn everything.  They come knowing nothing and our job is to introduce them to the world  and (2) I had to figure out what the gaps were and how to guide her in filling them.  Item (1) was a challenge all by itself.  Item (2) involved the detective work that allowed me to use my program design skills and my graduate study research to create resources and activities that helped us when the off-the-shelf products didn't.  The other thing I learned was that most books aren't designed with us in mind.  I determined that if the books don't have what I need, I'll have to create them.  And that's exactly what I've done and am doing.

So, April is Autism Awareness month.  I'm committed to posting and sharing.  What's your commitment - to a parent, to a child, the teachers, the researchers, or yourself?  Everybody loves to say it takes a village to raise a child...if you're in the village, you'll need to know a little something about the people who make up your village.  With current statistics at 1 in 150 diagnosed with an autism spectrum disorder, here's your chance to learn something about us and our journey. 

Awareness is the first step.  The next is action.  However small the action you take, I say thanks in advance for your commitment to the cause of parents like me.

Form - Content - Use

In an earlier post, I suggested that the assessments themselves are like games. I remember shortly after her 3rd birthday, we went for our first assessment - speech and hearing. On that day, I watched as the practitioner gently encouraged, cajoled, made requests, and affirmed my daughter. Nothing in her voice or body language hinted at the performance gaps. And me, the doting parent, what did I know? What I learned that day was the first of many child development concepts – language consists of content, form, and use.

“Content is the meaning of the message. It is also semantics. Form is the structural aspect that includes attaching some symbol to the meaning. The symbol can include a spoken word, picture or a sign. The form/symbol is effective as long as both the communicator and listener both agree on the meaning. Another part of form is the length and word order that includes syntax. Use is the purpose, function, or reason for the communication. It includes pragmatics and social communication.  When one of the areas is missing, a communicative attempt has been made but most likely was ineffective. If the listener and speaker are familiar, then the message may be translated.” (Taken from Speech language assessment)

She played games but didn’t follow the instructions, her eyes followed the specialist closely but in the end it was apparent, even to the doting parent that there were gaps. The specialist started with the good news (we always need the good news first – it affirms the strengths of our child). My daughter’s development was like a star. If you spread your fingers open, you’ll see the finger tips give you the height and the flesh that joins the fingers makes the low points – like a star. My daughter’s speech and language development had high points (and low points).

There were areas where she performed solidly. Then there was the other reality – in many areas, she simply could not respond. The good news was that she didn’t have an obvious hearing problem but there was clearly a problem of some kind.

The initial recommendation was to contact my local infant and toddler program for early childhood intervention services. The other recommendation seemed dorky but it made sense – get flash cards and put them around the house.  Also, she recommended that I use the flash cards or pictures to lay out the schedule. (I didn’t know then that transitioning from one activity to another was a problem….there’s so much you don’t know; and so much they can’t tell you when you get the diagnosis).

This is where I began my learning – the visual cues coupled with slow, deliberate use of the language provided stimulation. First, I got the naming words (nouns) and I put those around the house – table, chair, bed, door, sofa and things like that. Then, I got the action words - verbs - the easy ones to put up were cook, knock, wash, bathe. These I put up in the places where those action verbs were most used. The fun ones were a bit of a challenge. All of the flash cards related to outdoor activity, I put up on the wall in the basement. We’d use that exit to go out to the yard. That way, we could look at the pictures and I could talk about what we were about to do and she would see the pictures as we prepared for the activity.

I hated art and I still can’t draw, but here’s what I realized: I may not be a gifted artist with ability to draw, but my gift is the ability to turn language concepts and processes into visuals that would facilitate my daughter’s language acquisition. Many months later, I learned that speech pathologists and early childhood educators have that gift, so I could learn from them or from resources that they use.

When she started pre-school at 4, I needed to explain that she would do circle time, music, and other activities at one school and then the bus would come and take her to speech therapy. I wouldn’t be there to explain the activity while it occurred so it was important to have those pictures in her head so that when the time came to board the bus, she would remember that we’d talked about it.  Remember, she wasn’t deaf – just delayed in the acquisition of  speech.

The assessment experience also revealed that my daughter was kinesthetic – motor-oriented. That meant, if you did activities with language and movement it was easier for her to grasp meaning. Who knew?

As a student of linguistics, I understood syntax, grammar, and semantics. I knew how English had evolved from Latin to its modern day form. As a parent, all I knew was that she wasn’t speaking. Three days after her third birthday, I learned something else about language that language is not just words. It is form, use, and content and that all three elements need to be present for communication to be effective.

How time flies?

Well, it's been a while.  And I wish I could say that I was off somewhere warm twiddling my thumbs...not the case at all.  First there was the return to school - 1st grade transition.  That's a story for a separate posting.  Then, once we were settled in the school setting, there was the turmoil in the work setting.  I don't do roller coasters and up in the air rides at amusement parks but golly gee...life itself can be a roller coaster. 

With school, work, and home settled it was then time for the first class field trip.  I enjoy the role of chaperone but the hassle of securing the background check is quite discombobulating.  Been on the field trip...a different farm in VA - quite large, quite exciting though I couldn't understand why a farm, hosting children for pumpkin patch and other activities would cook in peanut oil.  Fortunately, we don't have peanut allergies but it seems like such an oddity given the number of children with peanut allergies.

After the field trip (November) came time to prepare for Christmas.  How many Christmas celebrations can one child participate in?  Three, it seems.

In the church play she served as a  junior angel.  Quite angelic and really riveted by the story and the music.  The joy of watching her make connections doesn't end.  The Amy Grant song about Mary (Mary's Song) on the radio it's compelling, when played in a church while actors convey the meaning with their actions, it's riveting.  Apparently, the music and the meaning of the drama as it unfolded, had more meaning to her than if we had read the story.  With the music and the drama images in her head, the bible story when it was discussed in Sunday School and read at home made even more sense.

Then there was the Sunday School concert.  And finally, there was supposed to be the Before & After Care holiday production and the school's annual Cookies and Cocoa affair.  Well, it snowed - 20-plus inches - so the school things were canceled.  Never fear, the Cookies and Cocoa was held in January - the night before another mild snow-ice event.  Singing walking in a winter wonderland was fun especially with the knowledge that there was more precipitation in the air.  What fun!

So here we are now in mid-January.  She made the connection between the "Santa Claus is coming to town" songs and the toy commercials and 'oh, I can ask for something at Christmas'.  This year, she wrote her first letter to Santa Claus.  Simple letter - just three items: dollhouse, princess & frog toy, and a bear.  Santa was more than able and willing to oblige.

How time flies when you're having fun...when you're transitioning from kindergarten to first grade...when your workplace is in chaos.  Even when time flies, there are learning moments and events that allow me to engage with the challenges of the ASD (autism spectrum disorder) in ways that are not only meaningful but also energizing and rewarding.

Here's to a great 2010 and more consistent blog posting!