Wednesday, October 21, 2009

Time lost is just that...lost.

Every time I share the blog information with someone I get a story of a friend, relative, co-worker who has a child with xxx. The Autism number is now 1 in 150 and that’s just for those who have Autism. Who knows what the number is for people along the spectrum?

It’s worrying that so many parents, prefer to do nothing rather than ask questions, research, or get a professional assessment. Time lost is just that…lost. The longer you take to get help, the steeper the hill your child has to climb.

We were diagnosed at 3. As it turns out, you can be diagnosed as early as 18 months. At that age, you should be able to respond to some simple instructions. Certainly, we want to hope for the best, but if the results suggest that there is a developmental delay or gap, waste no time. Get other professional opinions if you have doubts, but don’t waste time hoping that it will go away or that the child will outgrow the problem.

When I think back on the things we learned as a result of the speech therapy – all of the early learning concepts that come easily to others but were difficult for us to grasp – inside/outside; more; asking and answering questions. Can you imagine what kindergarten would have been like if she didn’t have a handle on these things?

Discovery when they give you the package (baby) to take home, they don’t provide explicit instructions on how the brain will develop and your role in supporting it.  Fortunately, there are more organizations, websites, and groups on the internet that can provide information. The challenge is separating the facts from the fiction.

I remember pre-school spent lots of time on the alphabet – there are still only 26 letters. I kept asking myself how many ways and times could they possibly do these letters? The truth is, knowing the alphabet is so fundamental to the fundamentals that you need to be versed in it going forward, backwards, and skipping every two letters. When I look at the worksheets she got in kindergarten, I realized that they use familiar things to help with learning addition. So, for example, they would add and the answer would be a certain letter. Sometimes, you’d have to find it in the alphabet; sometimes it would be the letter between two given letters; other times you’d have to figure out what the missing letter was. At that point, I realized, it’s not just about knowing the 26 letters.  It’s about being so familiar with them, the sounds they make, and words that start with these letters that WHEN (not if) you get instructions, puzzles, games to reinforce other concepts you’ll know the 26 inside out.  Reading isn't just fun, it's the FUN in fundamental!

So, perhaps it’s just older parents who are anxious about the seen and unseen developmental progress that their children are making. Truth is, for older parents, younger parents, seasoned parents and first-time parents, time lost is just that…lost.  You can’t go back and reclaim it. What you can do is be aware, be curious, be proactive. Ask questions, seek out resources and answers. In the end, you might just avoid losing too much time. The more time you have to work on skills, the greater the likelihood of positive outcomes. Every word, phrase, expression is a sign of the time invested in different kinds of experiences. These experiences provide a rich source of input. She will make use of them the best way she can as she grows. While there are no guarantees in life, of this I am still sure: time lost is just that…lost.



 

Tuesday, September 29, 2009

Dance to the music

I recently attended a concert featuring the American Spiritual Ensemble. Their mission is to keep the Negro spiritual alive. It was a fan-tab-u-lous concert. I enjoyed it from the moment they sang “Walk together children” at the beginning to the last note of “Walk together children” at the end of the concert.

My daughter was there as well. As we shared in the program, I was reminded of how in the early days, she danced to the music – any music. I distinctly remember how we watched Sesame Street videos over, and over, and over again. I realized that she was fascinated by the music – they sing songs for just about anything. Even Oscar the Grouch can get a song in.

What I really enjoyed about Sesame Street was that the producers were certainly harnessing the power of music to introduce not just early childhood concepts – same and different (one of these things is not like the other) or in and out, up and down. Music was used to introduce the viewer (parent and child) to the range of musical styles that existed. One of my absolute favorite Sesame Street videos is What’s the Name of That Song?

As Big Bird tries to find the name of the song that’s stuck in his head (who hasn’t had that experience?), we are introduced to a plethora of musical genres. First off, there’s the talent: Queen Latifah, Diana Krall, Wayne Brady, Diane Schuur, Patti LaBelle, Denyce Graves, The Dixie Chicks. If anyone can marry musical genres with appealing children’s concepts, it’s Sesame Street.

Discovery – exposure to ALL things bright and beautiful is crucial to building the brain and developing an appreciation for music in its many forms. Picture Patti singing the alphabet a la gospel style. My daughter already knew the alphabet but this was her introduction to a concept that applies to music and life – there can be variations on any theme.

Imagine Elmo dressed for bed and being serenaded by Denyce Graves, renowned opera singer. (If you live in Washington, DC you’ll know she attended Duke Ellington and she is featured on a mural just as you leave the city via New York Avenue, NW). She performs a song from the opera Carmen – all the little animals come out to sing during the chorus and Elmo finally falls asleep. The power of the opera singer gently crooning a familiar aria to Elmo is awesome and absolutely delightful. You don’t have to be a music aficionado to appreciate the talent, the giftedness of each artist, and the musical food fest that Sesame Street provides.

Discovery – children will grow musically if you feed them songs, programs, experiences that introduce them to all types aspects of music. If you make only one type of musical deposit, you deprive them of data points that they could use later in life to make sense of the universe. We don’t know how they process everything, but we do know that they take it in and store it for some other time.

When we finally saw Patti LaBelle on television in an interview with someone, my daughter recognized her immediately and began singing the gospel alphabet from Sesame Street. She was making associations from her data set.

At school, she arrived at the speech therapy sessions singing “I love to spell. S-P-E-L-L”. It’s a song from the reading program “Super Why”. Music comes naturally – we all have a voice; we may not all be gifted to sing for an audience – but we’ve got a voice and we should use it.

I harnessed her musical interest by signing her up for Kindermusik. She learned rhythm, played the glockenspiel, made a dulcimer and played it, and learned the recorder. Along with way we learned about whole notes, half notes, quarter notes. I had to help with the homework so it was a good refresher for me and it gave us something new to share – language was still a challenge, but the music tapped into an area where she was confident. God knew what He was doing. The language challenges were forgotten as she immersed herself in the variety of the musical experience that is Kindermusik. We learned songs from different countries and who was never shy singing out or with the words?

Discovery – if you don’t provide experiences that affirm the gifts, you deny the child an opportunity to be confident and proud of his/her strengths. No person is all weaknesses.  There are things that come easily to us and things that we have to work harder on. Kindermusik allowed her to shine – she sang lustily and was often the only one, besides the teacher - who remembered the words and the tune!!!

Picture this: you’re a child with a speech delay. You’re receiving speech therapy. Many times things people say to you mean very little. Then, you are introduced to a music class where the language is not words but notes and rhythm and it’s a language you can easily understand. Here is a place where you can dance to the music and make music. You can speak the language and be understood. At the Kindermusik graduation, one parent said “I’m looking to see her on stage ‘cause she is so talented.”

As the class unfolded over the course of the two years, she grew musically. Now, we’re staring the piano. The teacher says she has long fingers and good position – gifts from the Creator. She has been anxious to play the piano, here’s her chance. Yes, these things cost money but there’s a steeper price to be paid if we fail to nurture the gifts they have been given.

Discovery – the only way to know what’s inside the package is to open it. With a child, the mind is the package. You’ve got to expose it to all kinds of things so that it can open, blossom, and bloom. Like the computer, garbage in, garbage out. If you don’t feed the right things or enough of the right things, you stunt their growth.

Thanks to all who introduce us to music, whether we go willingly or reluctantly; for all who teach the future educators the joy and power of music; for all who sing, dance, play and encourage us to value the gift and power that lies in music – I say thank you!!!

Discovery – singing is a joy to me; watching my daughter learn and delight in a language that allows her to communicate, develops her brain, and affirms who she is – I am grateful to the Creator and for those He has gifted with musical talent. Through the gift of music, we have been allowed to grow and discover a place where we can shine and I for one will continue to dance to the music.

Where does music come from?

At 14 months my daughter attended a choir rehearsal with her Auntie. Auntie’s choir uses sheet music while they sing. I sang along and my daughter looked at the sheet music (it’s what everyone else was doing so why not?) Hours later, at home, I found her sitting on the bed putting the sheet music to her ear. Where does the music come from?  Eventually, she realized that there was no sound coming from the sheet music and so she began to sing the alphabet song.

Discovery – they really have to make sense of EVERYTHING!!!

I struggle with making sense of the formulae in physics and math. In the same way that I am challenged by the principles of these subjects, they have to understand the principles of the universe. The more we expose them to, the more data points they have to make sense of the world. We are each gifted by the Creator – the package arrives with 10 fingers, 10 toes, and it squeals and squirms. We are delighted by the cooing noises, the smiles, and the attempts to wave goodbye. What we often forget is that the slate is clean and our responsibility is to make deposits into the cognitive bank.

Acceptance – banging on the furniture, the toy drum set and musical instruments are critical to brain development. These first steps in music teach them things about sound that we cannot readily explain with words to an infant or a language-challenged child.

There’s lots of research about music and brain development. When she was born, I remember receiving a CD from Enfamil (the baby formula company). I listened to it and played the music portions for her. Then, I decided to get others.

Discovery – there are things about the brain that we are yet to unlock. The power of music has been unlocked for us.

For those of us who sing, we know the inner joy that comes not just from the instrument of the voice but the sheer power of listening to the accompanist, the orchestra, the musical interlude. Easter of 2004 or 2005, the choir at church did excerpts from a special presentation that they had done on Good Friday. That was my first opportunity in months to actually sing with a choir. The choir director, a music instructor at a university in Delaware, encouraged me to participate and graciously tolerated the challenge of my parenting while singing.

Affirmation – it takes ALL aspects of the village to support, sustain, and nurture not just the child but also the parents. I thoroughly enjoyed the rehearsals - that was time for me to replenish my spirit. It also gave my daughter more exposure to choral music and orchestra instruments. Her godmother took her to visit the Easter bunny during the final rehearsal. I was able to let my spirit soar as I sang songs of the Passion and I KNEW that my Redeemer indeed lived. HE had bled and died so that I could endure this life’s journey.

Finally, on Good Friday, I listened to the 7 last words from the cross and participated fully as the choir rendered its musical items between each message. As my daughter watched from the balcony of the church, sitting with her godmother, I knew where music came from!!!

Tuesday, September 15, 2009

Another birthday party?! Groan.

Pre-school had its challenges – not the work, not the routine, not even picking up on time to avoid late fees. The real challenge was the birthday parties. Don’t get me wrong, I like birthday parties. For us, the challenge was understanding that the birthday boy/girl was the one to blow out the candles. I’m sure every parent struggles with that at some point.

But, if your birthday is the first week of school and you don’t know everyone in the class yet, you won’t have a party at home or one of the regular party places. Instead, you share cupcakes with your classmates. Seemed like a reasonable solution to me. But, how do you help the child understand why everybody else is having a birthday party and, oh yes, your party won’t happen for at least another 9 – 10 months?

The first party we attended, I saw her getting close to the cake. It took me a while to figure out that she was getting ready to blow out the candles….yikes! I had to gently remind her that it was someone else’s birthday and she would get her turn at her birthday. Well, they have no concept of time, so each new birthday party, she thought was hers.  At each new party, she was disappointed. The survival technique became finding some kind of distraction when it was almost time to sing the birthday song. That way, we were far enough away from the table to not be a distraction to the blowing out of the candles part.

Discovery – having the party is not as traumatic as trying to understand why you can’t blow out the candles on someone else’s cake. At one party we learned that in one culture, they sing the song several times so that each child has an opportunity to blow out the candles. Certainly, a less traumatic way to share the birthday experience.

At the end of the first year of pre-school, we were able to have HER party. By this time, she had been to enough parties and understood that she was the center of this one. She was excited to see each guest arrive…almost surprised that they would come and share with her.  When it was cake time, she knew what to do and more importantly, she had enough speech to say "Do not touch the cake!". 

Birthday parties are better…she understands the whole concept of someone else celebrating. Birthdays, however, are still a challenge. We haven’t yet grasped the concept that you have to wait 12 months for your next birthday. Now, every time someone else has a birthday, she is slightly disappointed that she won’t turn whatever number that person is turning. Who came up with all of these ‘rules’?

As with the language, we take each new social context and concept at its own pace Life is full of written and unwritten rules.  For the sake of building social skills and appropriate language skills, I will endure another birthday party.



Sunday, September 13, 2009

Understanding the exchange

There’s a phase children go through where they mimic what you say and it’s cute. When that phase lasts longer than it should, cute becomes worrisome. Echolalia – that’s what it’s called. I remember people would say “Hi, J” and she would reply “Hi, J”. That went on for many months. We’d have to gently say to her, “No, you say, Hi Mom” or "Hi" whoever she was greeting. How do you explain to a child that the exchange goes like this – I say something, you say something (sometimes it's the same; sometimes it's different)?

These are the things we take for granted. Do you remember who taught you how your role in the exchange goes? I certainly don’t remember. I just know what I’m supposed to say to you when you greet me. She just couldn’t get it. There’s no play book that they give you once you leave the hospital with the bundle of joy – you’ve got to figure it out. If things are progressing as they should, no problem. If they’re not, what do you do to help?

Thank you and you’re welcome were a doozie. (That's my technical term for who knew it could be so complicated!) All children forget to say please and thank you. That wasn’t my challenge. My challenge was helping her to understand that the response to ‘thank you’ is ‘you’re welcome’. When someone says “hello”, you respond with “hello”. So, who changed the rules so that the response to “How are you?” is “Fine thank you” and the response to “Thank you” is “You’re welcome”. See, those are the rules of language AND social interaction that don’t come in a playbook, at least I didn’t see them in mine. So, imagine trying to teach her the difference between the social responses. Some stay the same but you insert a name and some exchanges require a completely different response that’s not presented as a clue in the greeting. 

Discoverynot only is language the tool for understanding your universe and communicating with others but it also comes with rules that are tricky to explain. Here is where the visuals and the activities that she did in therapy were helpful. The speech therapists had the tools and techniques that allowed her to eventually get the ‘system’ of the language in social exchanges. It’s much improved now…sometimes there is the occasional slip but now she can self correct. The ability to self-correct is HUGE.  It lets me know that she understands when she has made a language mistake. Self-awareness and self-correction are admirable qualities, not only in children.

She recently had a birthday and received many phone calls and greetings. In the evening, she received a call from one godparent. The person on the other end of the phone said “Happy birthday” and she automatically replied “Happy birthday” but then quickly corrected and said “Oh, thank you”. I didn’t need to remind her with my usual, “What do you say?” It’s amazing the amount of work that the brain has to do in order to help us communicate effectively with each other. Things that I do automatically do not come as easily for her. In those cases, my role is to model the language and remind her of her side of the exchange.

The newest social exchange is “Have a nice day”. Granny says that to her as she leaves for school. Sometimes the appropriate response is “You too”. Another appropriate response is “Thank you”. Who made the rules that say when you use each one? Why are there different responses? For now, we’re simply working on saying “Thank you”.

Conversation – it comes so easily to some both the language and the social dimension. For others, not only is the language a challenge, but they also have to cope with the unspoken rules of the social exchange. Understanding the dynamics and nuances of the exchange is one hurdle that we will continue to work on. As she gets older, she will have to cope with new social exchanges AND the little things that people can do with language such as sarcasm. I hope that she will be equipped with the right tools to help her understand the nuances of the exchange.

Friday, September 11, 2009

By the numbers

Humans have a way of making life understandable - one way is to use numbers - what's your date of birth?  how old are you? how much do you weigh? what time does the show begin? When babies are born it's all about the numbers - you remember how long labor lasted, the time of birth, the weight, length, and Apgar number.  It is all by the numbers. 

Once the baby is born, people can tell you how many weeks or months he/she is.  Who knew that we counted the early years in months?  He's 18 months (you mean a year and a half?) She'll be 24 months in a couple of weeks (you mean 2 years old?) We use the numbers to help us put things into perspective.

Numbers take on meaning in each different context - that's how we do it so that we can make meaning of our universe.  As you're enjoying the baby's development, you start looking for different developmental cues and clues - is she rolling over yet? Is he standing yet? She has started crawling. Girl, you know that boy is waving and reaching for things? The focus shifts from numbers to actions (things the baby can do).  Truth is, the doctor is looking at numbers - weight, height, circumference of head, temperature.

Turns out, there are other numbers that you sometimes don't get until your numbers are low (or too high). What do I mean?  when we got our first formal developmental assessment, I knew something was not quite right when the request "put the block on your nose" was followed by a blank stare.  I didn't really know how far behind we were until I had the numbers.

At 36 months (otherwise known as 3 years old), we were demonstrating skills at 18 months and 24 months (that's a year and a half and 2 years).  Translation - language and cognitive skills were almost 2 years behind.  It's all in the numbers. In my universe, she looked fine.  She was eating, playing, she new over 100 words.  True, she didn't produce original speech but every child develops at a different pace.  But I didn't know the numbers!!

Our first set of numbers brought home the stark reality of the scope of the problem: at 36 months - auditory comprehension was at the 21-month level; expressive language was at the 20-month level; and total language was at the 19-month level.  We were more than a year behind.

When assessed at 50 months (4 years and 2 months), she was as much as 20 months behind in the area of picture vocabulary.  That's where they show you pictures and you say what it is.  Hearing and seeing the numbers was worrisome.  The numbers let me know what work we had to do.  But, in the months ahead, when the numbers started springing forward they let me know how much progress we were making in the various areas of assessment.  Show me the numbers!!!!

Frame, corner, or just anywhere?

So what’s the best way to do a jigsaw puzzle? I usually get the box so that I can look at the picture. Once I’ve studied the picture, I start looking for the pieces for the frame. For me, it makes sense to do the puzzle with a frame.  That lets me know how much space I’m working with. Well, obviously there’s more than one way to do a puzzle and the thing with the picture and the frame, that’s my way not hers.

They say you should expose your child to blocks, manipulatives, and puzzles. All of these things are very helpful for developing a range of skills including: gross motor skills, fine motor skills, visual discrimination, and simple putting things together. Puzzles are fun, especially for little people. They’re another source of information about the world. With their blank slate, the first-stage puzzles are usually pictures of things that go together. They’re not puzzles in the sense of the 100 piece or the 500-piece puzzle, but they are puzzles in that they have shapes that go in certain places. Those are good for learning about objects, fruits, vegetables – they make them in different themes. Once we mastered those, we moved up to the 24-piece puzzle. They're also good for developing - fine motor skills, thinking skills, problem solving (where does this piece go?  why doesn't this fit in this space?).

Discovery - all techniques are created equal. It took me a while to learn that my technique – frame first and then section by section – made sense to me based on who knows what. It did not make sense to her. The more I tried to get her to do the frame first, the faster and more irrationally she seemed to approach the puzzle. She would pick up two pieces and snap them together. And there I was asking her and myself “How did you do that?” Give her pieces and she’d ignore them. She obviously knew what she was looking for and how she was determining which pieces went together. Her eyes and body language said, “Mother, let me do this my way ‘cause it really is working for me.”

Discovery – sometimes their technique really is better than yours. Maybe better isn’t the right word. It’s simply their technique and it’s working. Try as we might to get her to use the picture, start with the frame, or do one corner of the puzzle, she always used some other technique. Over time, we realized that her eye for detail allowed her to look at the puzzle pieces in ways that we couldn’t.  Much like how she was viewing the movie “The Sound of Music” (see earlier blog entry: Do you see what I see?). Who picks up a piece with a white circle and recognizes that it’s part of the stove in the Hello Kitty kitchen puzzle?

I’m sure there will be some places where I will have to insist on a more accurate technique. But, doing puzzles at 3 is not that place. She does the puzzles from any starting point…another indication that her mind’s eye sees things differently from mine.  It's not wrong, not right, not better just her chosen technique.  It’s also another piece of information for me…when in doubt, try to understand how she is processing, receiving, or experiencing the information. Working from that starting point, I’m better equipped to help her with each new puzzle that shows up in pre-school, kindergarten, first grade, and any where else in the life journey.

Frame, corner, or just anywhere? In the canvas of life, some things have to be sequential...some dont'.  If you’re doing construction there’s a right way and a wrong way. If you’re doing puzzles at 3 and 4 years old, it’s really just about YOUR way to achieving the goal of a completed puzzle.

In some things, you can start at the frame, in a corner, or just anywhere.  Learning to piece things together is a skill.  Seeing things with your mind's eye that's a gift to be nurtured. 

Doing puzzles, playing games, solving problems, experiencing life for a child is like doing a puzzle - some pieces have to come before others. Some pieces can be put together and set aside until other pieces of the puzzle are ready or make sense....as we watch our children develop, our challenge is to discern what methods they are using to piece together the universe around them.  They may just choose to do it frame, corner, or anywhere...your job is to support, nurture, encourage guide.  We learn from exploration...there's time enough later on to be more insistent on the 'right' technique. 

I had to decide whether I wanted my child to experience and explore or to do things my way?  And, was/is  my way better or just my way?  My way is better for me; her way is better for her.

Tuesday, September 8, 2009

Oh what a tangled web...

Do you know which comes first, the chicken or the egg? That’s a debate that can gone on forever. Here’s another trick question, how do you teach more? Yes, we ask them “do you want some more juice?” “are you going to eat any more?” But what is more?

When we talk, we use all kinds of words and hope that the person we are speaking to has the same shared meaning for the words. You and I know what more is. My daughter knew what more was when asked about more cereal, more milk…but when it was time to select the picture that had more…yee-ha! That’s a different story! What do you mean circle the one with more?! Before this, more had to do with things to eat or do. Now you want me to look at a picture and determine more?

Discovery – you don’t know what you don’t know until you come face to face with it. I didn’t know that more was not an obvious concept until I saw the blank stare when asked to point out the jar with more jelly beans or the glass with more milk or the box with more toys. More is a single word that applies to countable and non-countable items. (Yea…see what goes in to understanding the language). More juice usually is followed by someone pouring juice into a glass or cup…which action there does the young mind recognize as MORE. More cereal usually is followed by a bowl and some additionally cereal and milk. Which action there means MORE? You know the answer…they only experience the answer (as they drink or eat).

So when the picture shows up on a piece of paper, how do they know what MORE looks like? You break it down….break it all the way down. I took toy cups and toy food and demonstrated more. Bear has some juice…rabbit has more juice. I would put the cups side by side so that she could SEE that one glass had MORE than the other. Ah-ha! This is what more looks like (with a non-countable liquid object). Now we had to understand more in terms of countable objects…a stack of blocks and another stack of blocks. One stack had MORE blocks than the other.

Discovery – words only have meaning because we give them meaning and that meaning is shared by us all. A child with a blank slate is trying to understand the universe around him/her and there are lots of words that have meanings that are not obvious. A dog is the four-legged thing that barks – they come in different shapes, sizes, and colors. Each time a child sees a dog, he/she says the word part in recognition and part in confirmation – the poodle dog is a dog just like the Labrador dog is a dog. Those are concrete objects that share a label but look slightly different. They’ve got that to figure out and understand and then you add MORE.

It turns out that spiders aren’t the only ones who weave a tangled web. Humans in their use of language have an extraordinary web that their young not only have to acquire but also figure out. One way to help the tangling and untangling of the web is to recognize that it all makes sense to you….it makes no sense to them. Be attuned to how your child experiences the world. If she’s visual, then you might need to be creative as you explain these little words that power the language. If he’s kinesthetic, then you might have to do something else that allows him to experience MORE and other concepts in a way that brings meaning to him.

Think about all of the words you use....some have meanings that are clearer than others.  What's more important?  Do you want some more examples?  How about some more juice?  What really is more?  Oh, what a tangled web. The more you know, the more you can help.

Thursday, September 3, 2009

Do you see what I see?

I like the movie the Sound of Music. I love to sing. I enjoy the story line. Obviously, I own the movie. So, I put it on one day for my daughter to enjoy. Loved it!! She was mesmerized by the songs and there are lots of them. She enjoyed the scene with the children putting on a puppet show. She started signing along so my sister googled to locate the words to “I have confidence in me”. That’s Maria’s song on her way to the Von Trapp’s home.

Those of us who’ve seen the movie remember favorite songs, maybe even a scene or two. Do you know why a child of 18 months would need a hooded towel to watch the opening scene? I certainly didn’t. Took me long enough to figure out what she wanted…remember there is no dynamic speech coming…no quasi sentences. Just pointing and urgency (and some frustration).

I didn’t see what she was seeing. She was probably thinking “Do you see what I see?” The opening scene of the movie features the sound of music coming from a convent. And, if you pay close attention, you will see that the scene focuses on the nuns, in their habits, kneeling in prayer. Ah-ha, says the idiot mother. Now I see what she sees. She needs the hooded towel to emulate the nuns in the opening scene!

It continued like this throughout the movie. Each time she would watch, I would discover some new detail that I’d missed over the years. Professional colleagues who know me know that I have an eye for detail but this was different. She was seeing things that I simply could not. She saw the details that made the fabric of the movie. Do you remember when Maria holds on to the curtain in her room as she sings during the rainstorm? Do you know the cues in the music or the son that tell you when to step up on the bench outside while Liesl and Rolf sing the song “I am 16 going on 17”? That’s what I mean.  We see the movie in its totality. She was seeing, receiving, experiencing the movie with an eye that was unfamiliar to me.

Discovery: my role is to figure out how she sees, processes, and experiences the universe. If I can understand how her mind processes the input, I might be better able to translate other aspects of life in ways that she can better understand.

Sometimes, you have to listen to the silence or interpret the confusion on their faces as they try to say to you “Do you see what I see?”

Wednesday, September 2, 2009

Dancing in the Balcony

We attend a church with a balcony.  I've been sitting in the balcony since my daughter was born.  First it was the need for space - the carrier, the bags; then, it was ease of access - you've got to get up and leave to feed or change the baby.  Over time, it has become the place that allows her to see better.  She loves music so the balcony is the best place to be to see or hear the choirs and look at the handbell choir when they play.  It's also the best place to be when the liturgical dancers perform. (Fear not, I'm sitting one or two pews from the front.  And when I'm sitting in front, I'm holding the tail of her skirt or dress.)

At first, I was intrigued by how intently she looked at the choir director.  Then, she started imitating the director's every move.  I should have known that a gift was being revealed when she started conducting other musical items on her own.  Then, came the sight.  Imagine you're sitting on the ground floor of a church or concert hall and you know the performer is on the stage or at the front of the sanctuary. But, there is movement upstairs and people keep looking up and smiling.  What do you do?  Of course, you look up and smile too...someone is dancing in the balcony!

I smiled politely as people looked up - in awe, amazed, curious.  I smiled politely when friends came by after service and said "I just love to see her dancing and conducting".  As a musician and performer, my first thought was "but it's distracting." 

Discovery - sometimes what you think is the featured presentation is not really the featured presentation. It took a while to recognize the gift. I was slightly embarassed - she was oblivious.  She was doing her own choreography in time to the music and with the right mood and interpretation.  I certainly didn't teach her that.  The spirit of God raised that up out of her very being so that she could worship Him in spirit and in truth. It was visible to all of us so that we could be reminded that while there was a developmental delay in one area, her cup was running over in another area.

Diagnosed at three, dancing in the balcony at 4, and finally taking dancing lessons at five.
Discovery  - letting your child dance in the balcony of life affirms who he/she is and allows him/her to demonstrate, develop, and nurture the gifts that may be hidden.  Speech is hugely important to life but it is not the only form of self-expressionLet everything that hath breath, praise the Lord!




Tuesday, September 1, 2009

Where do I begin?

In the Sound of Music, Maria (Julie Andrews) attempts to teach the Captain’s children how to sing. She starts strumming the guitar and says “let's start at the very beginning. A very good place to start.  When you read, you begin with A-B-C when you sing you begin with doh-ray-me” and that is the very place that I started.

One of your first decisions as a parent, if you’re going to work, is "who will take care of my child?" You ask the obvious questions, "Is the place clean, safe, and are the caregivers loving?"  I already had a great child care provider so those questions had already been answered. With the new information about the speech delay however, I needed to ensure that other questions were answered. How can we tap into the strengths that this child possesses while building on the areas that need help? Will the daycare provider have an environment that supports language development and stimulation? 

Start with the basics: I started with blocks, puzzles, board books, manipulatives that continued to provide the knowledge deposits that she needed. I began to manage the language that surrounded her…not too high brow, not too low, certainly not vulgar or colorful. 

Discovery: You’ve got to be careful what you say. In the early days, my sister would say often “she’s not deaf; she’s just not speaking.” That was a reminder that even though you’re not getting a whole lot back in (expressive) language…the ears are working and that stuff you’re tempted to say will be stuck in there. Ain’t no telling when and how it could come flying out when you least expect. And that could be embarrassing.

So, with a house decorated with flash cards, what else do you do to support speech development? I certainly learned how to say things in different ways. There’s an unfortunate thing we do when people don’t understand what we’re saying…we speak louder. Duh? If they're deaf, speaking louder does not equip them with hearing. If there's a comprehension problem, speaking slower does not aid comprehension.  I had to learn to speak differently. 

I learned quickly that I had to find different ways to communicate the basic concepts.  Sometimes the flashcards had pictures that helped…those were the easy times. Other times, we simply had to get up and move to the place where the concept was visible or to demonstrate the concept itself.

That summer, she qualified for summer school and it was a great experience. She was familiar with the bus routine and the teaching staff. I bought some pre-school resources and tried to complement what she was learning in therapy and at day care. (more about the $$$ wasted on those resources).  She was great with colors, numbers, fruits and vegetables, and weather. All of those easy concepts that come with pictures. We started with the basics and that gave us a strong foundation in preparation for pre-school. They can’t survive if you don’t start with the basics!! 

Blocks and manipulatives of every kind, these were My Gift to My Child.

Monday, August 31, 2009

Follow that bus!!!

It’s one thing to seek information, it’s a whole different thing to follow it confidently. 

The recommendation was speech therapy twice per week. The ease with which the professionals tell you how it all works and you take it in understanding it and confident in the moment. When the time comes for action though, that’s a whole different ball game.

The Early Childhood Center was in the area so things being divinely ordered - as they often are - the bus would come and pick her up at daycare and bring her back. Again, sounds great in the moment but it's a completely different story when the bus arrives!!
 
Imagine being three years old and having to leave the security of your child care provider who you’ve been with since you were 3 months old. You have no idea where you're being taken,, but it sure looks like everyone is in on it. The caregiver puts on your coat and hat and shuffles you outside to a big yellow bus talking reassuringly all the while. Unfortunately, you don't understand what's happening. Can you imagine the fear? And, because you have a speech delay, even though they're telling you where you’re going, it doesn’t mean a thing. That’s her side of the experience. Mine is a little different.

In my head, I understand that therapy should or could help. I certainly appreciate that my tax dollars make it possible for the bus to pick her up and bring her back. I appreciate that I don’t have to pay anything out of pocket for this vital service. But, you want me to put my 3 year old on a bus with people I don’t know.

Are you CRAZY?! You don’t know how crazy a concerned parent can be. Yes, I followed that bus.

I watched in the parking lot as she was loaded on to the bus…crying and confused. I followed the bus to the school and made sure she got off safely. I don’t remember now what I did for the duration of the therapy session but I do know I followed that bus back to the day care provider. We survived. 

Over time, the bus ride became easier for her and for me. That was until the therapist called one day and said “your daughter missed the bus”. Is you crazy?! How is a three-year old going to miss dah bus?! Ain’t that your responsibility to get her on and off the correct bus?! Ay! She quickly reassured me that my child was with her and they were awaiting the return of the bus. For all of the failings and complaints people have about the school system, my introduction to the services was pleasant and manageable - well except for the part where the 3-year old missed the bus.

All in all, those first months after the diagnosis were not so bad. There were moments of discovery - opportunities to learn about local and state systems that could provide support. Situations that supported what I already knew about the diagnosis, my child, myself. And certainly, opportunities to follow the bus to ensure we were headed in the right direction.

Friday, August 28, 2009

Join the Village

They say it takes a village to raise a child.  What does it take to raise a child and support the parents through the journey?  A village within a village.  I'm inviting you to become a 'follower' of this blog.  Following allows you, me, and the rest of us to see how big the village within the village is.  So, when you're finished reading this posting, just move over to the right of the screen and 'sign in' as a follower.  That's it.  Encourage your friends and others who view the blog to also sign in.

Wednesday, August 26, 2009

Who knew?

Now that I've been on this journey for almost four years, I can stop, take a breath and ask myself, "Who knew?"

Hindsight isn't always 20/20...it's just my inner spirit saying 'my soul looks back and wonders....' 

Where were the words? There's so much that they don't tell you about the developmental milestones. There are milestones and yes, while every child develops at a different pace, there are some clear signals when something could potentially not be going right. My princess was quiet and such a charming person. She did the first sounds, but I didn't realize that her language development was not on track.

When she was almost three, I heard another 3-year old speaking in sentences. Why was my child's speech so garbled and difficult to understand? Even when you're afraid of the answer, you should still ask the question.

The pediatrician heard her speak and said "I can't understand a word. We should have her tested."
Even at that point, I still had no clue what I should be concerned about, so I wasn't really anxious. Who knew?

Babies are a joy. Babies are a blessing but who knew that there was still so much that a new parent had to figure out in addition to the feedings, the immunizations, and the best child care options, social skills and then there are the developmental milestones that are just as important. Who knew?

Tuesday, August 25, 2009

Inside, Outside, Upside Down - Huh?!

Who decided up was up and down was down? Moreover, how do you teach those, with words, when words (spoken and received) are your challenge? It’s all in the pictures.

She was learning about inside and outside. Now that I think about it, what makes inside inside? Who decided that outside was outside? And if you’re three years old and new to the planet with a speech challenge then none of it makes any sense. When asked what you see outside, she gave me something that in her mind was an answer but wasn’t the answer.

How did we deal with that? Get moving….go outside and talk about outside; point to things; name things. Then, go inside and talk about inside; point to things; name things. I know, these are things you should be doing anyway. But, if the language and the concepts don’t make sense in general, what makes you think that talking about them with no real purpose is going to be any more successful.

Discovery - seize the moment. I learned to quickly think about the best visual to support the early childhood concepts.

Up – down; in- out; before – after…all of these a fundamentals to pre-reading and pre-math. If she doesn’t get them now, knowing what comes after 5 will be a struggle. 

Discovery - there’s lots of information about early childhood concepts; you have to figure out which comes first the chicken or the egg. 

Discovery - multiple intelligences (Howard Gardner). An excellent resource on how to tap and strengthen your child’s other intelligences. For us, experiencing the concept made the words meaningful. See, feel do…that helped the words develop greater meaning. Music and rhythm were the glue and the channel that we function on. Anything can be turned into a song…music appeals to her and she has grasped the concepts through movement and music…so, sing, sing, sing!

Find the message media that works for you – sing, dance, draw, act. Your child has gifts – find them and use them as you work your way through the early childhood concepts – inside, outside, upside down and all of the other pre-school concepts that pave the way for the future.


Journey of discovery

Having the baby is the easy part....the rest is truly a journey of discovery.

At the speech and hearing clinic I was advised to provide her with visuals that indicate the routine. I bought flashcards and put those up around the house – action words and names of things were attached to double sided tape and put up all around my brand new house. I wasn’t concerned about the impact on the walls or the décor. My house became a learning lab of visual stimuli to help massage the brain and stimulate speech and language acquisition.

Discovery – when it comes to your child, décor takes second place to functionality. It’s up, she sees it, we can say the words and demonstrate the actions – that’s my interior design standard and I’m sticking with it!
So with the PDD-NOS diagnosis what comes next? I must confess, I spent the first few weeks going through the ups and downs of ‘ah-ha, well now it makes sense why we had this but not this’ and the pain and confusion of “so what does this mean? How can I help her? Will she be alright.”  It is a journey but I chose to be committed to being optimistic.   
                                                                                              
Yes, they gave it a name. Yes, I understood what it meant in terms of the blank look and having to say things in multiple ways. But oh, now came the pain of figuring out how to help her and help myself. How to communicate to others the basis of babbling or the echolalia…all real signs that might have meant something to me if I had been aware of the whole Autism spectrum thing.

For me the label was not a problem. I remember telling one parent the diagnosis and the response was “ I don’t like labels”.  You know what, you don’t have to like the label but you sure ‘nuff can’t treat or resolve a problem if you don’t know what it is. By giving it a name, I had new found power. I knew, to some degree, what I was dealing with and truly, the Lord was at work because now, all of my formal training in a seemingly unrelated area became the resource that guided my actions.

Discovery – other people’s issues are just that their issues. You’ve got to do this journey in a manner that is comfortable for you and likely to achieve the results you’re looking for. The goal for us not simply comfort. It’s speech development and understanding how this child is differently gifted.

First things first – I told my pediatrician of the diagnosis and was referred to the Maryland Child Find program. That’s the infant and toddlers program for children with developmental delays and other challenges. What luck! As I discovered perhaps two years later, Maryland is one of the few states with a robust infant and toddler program.

We were scheduled for an assessment…another round of testing (games as far as my daughter was concerned). The results were the same…you could see, hear, and feel the confusion and the obvious ‘what are you saying?’look. This time we got even more specific information that informed the recommendations for therapy.

Discovery – early intervention is REALLY a huge key.  Having already followed the recommendations received at the speech and hearing test with the flash cards for stimuli, I was ready for some new guidance.

With each new piece of information, every milestone that she reaches and achieves, every milestone that goes unchecked presents an opportunity for a new journey of discovery.

Beyond Denial

There's so much excitement once the baby is born, we sometimes forget that there is much we still do not know.   She was a quiet, well-behaved baby.  Never made a mess with food; didn't have difficulty eating with a fork on the first try; not a sound in church.  She was, and still is, adorable.  But who knew?

I took the doctor’s advice and I had the speech and hearing test done. She could hear – that wasn't the problem. The challenge was the speech part. Watching the professionals do their job was enlightening and yet disheartening. For the child, it’s all fun and games. As the parent – I suddenly realized what gaps existed. Simple instructions and questions go unanswered.

In my own world of joy, I failed to realize how much was passing my child by or simply not being acquired. The good news was that the development was like a star with points….there were places where she was way ahead and there were places where there were developmental delays. I was still very naïve so I left relieved and committed to taking the hearing test just to be sure that there were no problems there.

Hearing test was fine…she could hear the noises and respond as required.

 Being satisfied with results that make you comfortable could be a mistake.  Because I was really not sure what I was dealing with I tried to find a place that could give me a broader and more specific assessment. I was in luck…Johns Hopkins University is the home of the Kennedy Krieger Institute (KKI). You really don’t know what you don’t know until you make a discovery. Kennedy Krieger was a discovery of immense proportions. Not only did I learn about the range, scope, and quality of the work they do, but I also learned about a condition I had only heard of in passing – Autism.  Now I became worried…what if this was the diagnosis, how would she survive in this world? How would I survive?

The developmental assessment was eye-opening to say the least. Sometimes it's not just about the money.  It was costly but I had to have answers. Some kind of guide to what the future might hold.  If you want information, you sometimes have to find the money to get at least a hint at the answers. Let's not even talk about what is covered by the insurance and what is not.

The testing session, like others, featured games and simple requests for my daughter to complete. The first couple of questions seemed pretty harmless and she kind of answered. Reality struck when the practitioner simply said “put the block on your nose?”  It seemed easy enough to me so why was there this blank look. I knew the look…it meant ‘what are you saying?’.  I’d seen it before but it had never registered as an indicator that things just weren’t connecting. My heart sank…it only got worse from there. Simple requests…draw the pattern, finish the pattern, complete the pattern…..nothing. Then there were the questions asking for information and nothing could be produced. While my heart sank, the godmother who was with me affirmed and encouraged my daughter.  I may have done so but I remember most the sense of awe at how far behind she was.

The diagnosis – well, she’s not autistic. (That’s good news, or is it?) She’s got PDD-NOS….pervasive developmental delay not otherwise specified…and it manifests as a speech delay. What does this mean?!  I understood clearly that at 36 months her language skills were at the 18-month range.  I could do the math enough to know that represented an 18-month lag.

And so began a new and different journey in parenting. Something stole the joy of being a mother and replaced it with confusion, anguish, fear, concern not only for my child in the present moment but also the future. With this diagnosis, what kind of future could she have?

Getting past or through the denial is the first step in a long journey. But, there is life, hope, joy and triumph once you get beyond denial.