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.