Growing Through Reading

Over the last year, Hannah has moved from being a pre-reader to a voracious reader. When the Camaratas diagnosed her with the mixed expressive/receptive language disorder, they confirmed for me something I suspected - that phonics would be a very difficult way for her to learn to read. Fortunately I was already against the phonics only method anyway.

I have been reading to Hannah since the day she was born, and she quickly grew to love books, and even when very young I would find her with a stack of books going over every page. During our kindergarten year of homeschool, most of our work was focused still on spoken and understood language development, and books remained an important tool in this process. In January 2008, I greatly increased our focus on written words.

This may sound strange, but one very important tool in building her reading foundation was actually a phonics based program known as Reading Rods. We have used (and continue to use) a variety of the Reading Rods sets, and if anyone is interested I'll be glad to give you more specifics). The great thing about this tool is that it is not only visual, but tactile as well. So, I removed the phonics aspect and adapted to Hannah's learning style - she very quickly learned to build (literally) words; the success and fun the Reading Rods offered her was a great kick-off to her wanting to learn to read.

I'm going to be putting up more posts over the next few days about teaching a child with a mixed expressive/receptive language disorder how to read, but I'll close for now and wish you a good night.

OneMom

Time to Write

Greetings and apologies to all who have been waiting far too long for a new post here at "A Time to Talk". Part of my delay was my own desire to chronicle our entire journey of having a child with a mixed expressive/receptive language disorder. I realize now that I cannot begin to cover everything we've been through the last seven years. Instead, I will post more often, dealing with current challenges and successes, and I'll toss in older information as I have time.

If you have a child facing these communication challenges, please ask any specific questions and I'll be glad to share with you what worked for us.

OneMom

Evaluation with the Camaratas

Hannah's evaluation at Vanderbilt University was in August 2004. She was 32 months old at that time. We waited only a few moments before Mary (Camarata) came to get us. Right away, any fears or concerns I had about being there, were washed away. Mary very briefly said hello to my husband and me, but then focused her attention on Hannah. At the time, Hannah had about 60 words (mostly nouns), and most of those were indistinguishable to anyone but me. Even at that young age, Hannah was always able to discern if people were really interested in her or not. People who threw too many words at her too quickly, would quickly be ignored. People who took the time to speak simply and slowly, and who also took in anything Hannah communicated (verbally or otherwise), would have Hannah's full attention and joy.

After a brief elevator ride, we were greeted by Dr. Camarata (Mary's husband, Stephen. He is one of the best researchers and evaluators in childhood language disorders, late-talking, and autism). He also engaged Hannah quickly and easily. I do need to give Hannah a little credit though, because she is a very easy-going kid who is not rattled by new things or new adventures and approaches these situations with the attitude of "this is going to be great!".

The evaluation room was purposely sparse in appearance, with some simple furniture and a large mirror (two-way). Unlike the horrible evaluation I discussed previously, this room had no toys, no books ... nothing to overwhelm or distract. We spent some time chatting, asking and answering questions. Then my husband and I left the room, and Stephen and Mary got to work.

Following is the list of test and evaluations that were conducted. I have not included all that was in the report, as it got very technical and lengthy at times:

• Leiter International Performance Scale – Revised (Leiter-R): The Leiter-R is an individually administered test of nonverbal cognitive performance. It yields a cognitive performance score with a mean of 100 and standard deviation of 15. Hannah’s nonverbal cognitive performance fell in the average range of functioning. This is an estimate of global nonverbal intellectual abilities based on the performance of complex nonverbal mental processes involving conceptualization, visualization, and inductive reasoning.
• Preschool Language Scale, Fourth Edition (PLS-4): Auditory Comprehension: Raw Score 24, Percentile Rank 1st, Standard Score 66; Expressive Communication: Raw Score 29, Percentile Rank 6th, Standard Score 77: Total Language Score: Standard Score 69 Percentile Rank 2nd.
• Peabody Picture Vocabulary Test-Third Edition (PLS-4)
• Childhood Autism Rating Scale (CARS): Non-Autistic Range.
• Spontaneous Speech and Language Sample (SSLS) was collected and produced a mean length of utterance (MLU) of 1.16 morphemes. This MLU fell more than –2.33 deviations below the expected mean for a child Hannah’s age and is more typical of a child 18 to 22 months of age (remember she was 32 months old at the time of testing). Though Hannah’s use of language was limited, she did use it in appropriate contexts (i.e. labeling objects of play, saying "down" when she wanted down, pairing words with play actions "wee!"). Her speech was very difficult to understand. Vowel and consonants were inaccurate and phonemic combinations were reduced.

Summary and Recommendations
Based on these findings, Hannah currently exhibits a mixed receptive/expressive language disorder. Hannah’s language and interaction skills pattern more like a child with language deficits, rather than a child with Autism which has pervasive social/pragmatic concerns at it’s core. Language intervention should focus primarily on increased receptive and expressive language skills with emphasis on understanding at the single-word and two-word level. This level of focus is also recommended for the phonological needs.

As we got ready to leave Vanderbilt, Dr. Camarata walked out with us ... he was rather taken with Hannah .... he reassured me again that Hannah was not autistic. He told me to focus on building language and not to even worry about the phonological problem ... the first goal was to increase spoken and understood language. We could clean up pronounciation problems later. At one point during the wrap-up, Mary wanted to include a diagnosis of dysarthria (Hannah tended to try to say some words with her lips basically closed ... such as pillow or balloon), but Dr. C. said "no", because Hannah could whistle and that immediately removes that diagnosis. Hannah actually spent much of Christmas day when she was just 24 months old, playing with wrapping paper and teaching herself to whistle. I whistle a lot, and even though speech was difficult, she managed to figure out how to whistle. She's still a great whistler.

We left there, armed with the truth to hush the nay-sayers who kept pushing autism at me. It was also at that point when our work and our journey began in earnest.

More to come ...

OneMom

Our Journey - Part II

As I searched the internet for information about kids struggling with language, I found three key things:

• Books by Thomas Sowell about late talkers. Though not a perfect fit for my daughter, it was encouraging to see that language difficulties weren't always related to intelligence or ability.

1. Late-Talking Children
2. The Einstein Syndrome

• The Natural Late Talkers Group (message board). These folks are amazing.
  
• Dr. Stephen Camarata and his wife Mary Camarata.
  

I read Sowell's books, and they were encouraging. Some of what he wrote fit Hannah and some didn't.

I joined the Late Talkers group. This was a very important step on our journey. These parents have children in every age group (the ones with older kids were especially helpful to me because they had already been where we were at the time). A couple of things about this group: they will not diagnose your child (nor should they); they are not against having children evaluated for their language difficulties, but they are strongly against having those evaluations done by someone unqualified to do so and against sticking a label (ie, autism)on a child for the purpose of obtaining services.

I called the Camaratas. Hannah was not quite two years old at the time. I spoke at length with Mary and received valuable guidance and instruction about how to facilitate language. A month or so later, my mom died and we got off track a little bit. At the beginning of 2004, I felt like we needed an evaluation for Hannah, but I was very leary of getting a label stuck on her that didn't fit, but would likely "stick" for the rest of her life (at least academic life). So with some guidance from the Camaratas (they didn't know anyone specifically in our state) and some research, I made an appointment.

Initially, my husband and I met with the folks at the center alone. I had many questions and wanted verifications about what they believe and how they work with children before subjecting Hannah to them. We both felt ok with them and their process, so I brought Hannah in for her evaluation ... HUGE mistake.

When we arrived, they put us in the evaluation room. The room was filled with toys and one book (I learned later from the Camaratas that an eval room should be very plain with no distractions). Hannah has always loved books and that's what she wanted to look at. When the evaluator came in (a college student, not the staff member I thought would be there), she asked me to leave and said I could observe through the two-way mirror. What I observed that day was a child I had never seen before then or since. Here's what happened in a nutshell:

• She took the book away from Hannah first thing. But she put it in Hannah's sight and her reach. When Hannah would go to get it, she would sternly say "NO" (I say "no" to many things, but not to books).
  
• Hannah became very frustrated and I finally opened the door and said to the student "give me the book". I quietly told Hannah to play with whatever it was the student wanted her to do and that she could look at a book later. Then I walked back out. And Hannah was fine with that (remember, she's barely two at that time).
  
• This person just bounced from one thing to another with Hannah, giving her no opportunity to explore or to relax. Just as Hannah was beginning to enjoy one thing, she would take that away and say "do this". The dizzying speed and lack of any control of what was going on around her moved Hannah quickly into panic. Not a tantrum (she's never had one), not shutting down, just panic ... much like I might feel if I were in the middle of Beijing and needed help but nobody spoke English. That's the problem with a person who has a receptive language disorder - they have trouble understanding (processing is perhaps a better word, because they are not deaf) what is being said to them.
  
• As I was watching this with the director (I gave her an earful - politely, but firm), I realized they were not interested in Hannah. They were only interested in giving a serious diagnosis and signing up a new client. I had learned from the Late Talkers group and the Camaratas that evaluations and therapies must be child-led (not child controlled, but the adult has to make some concessions and adapt to the child a little bit as well), and this evaluation was not child-led at all.
  
• I went into the eval room and picked Hannah up from the middle of the floor, got our things and walked out. I was followed closely by the director and the student telling me that the evaluation wasn't done yet (I informed them that it was), and they told me that my daughter had autism, was in serious trouble and if I didn't get her help right away she would never be normal.
  

Normal? What is normal? I suppose to them it's having little stepford children who all develop and act the same way. I knew in my gut that Hannah wasn't autistic, because the key marker for true autism is a lack of motivation for social interaction, and Hannah has always been a very social little girl. Some other red flags from this experience:

• They said they hadn't completed their eval when I took Hannah away and ended it myself, and yet they still gave a diagnosis even though they weren't done.
• They had not used even the most basic of tools in regards to diagnosing autism (such as the CARS), and yet they "knew" that's what was wrong with her.
  
• They gave Hannah credit for NOTHING. When she would complete a task (put the square block in the square hole), they said "it's just a learned behavior". Or when Hannah would do something she was particularly proud of, she would make the ASL sign for "I did it" and verbally say "did it!", they again said it meant nothing and was "just a learned behavior". Other than breathing and heart rate, much of what we all do is just learned behavior ...
  
• The biggest red flag of all - this was a student and her semi-professional director. A semi-professional is someone that is not qualified to diagnose something like autism (we were there for a speech/language evaluation), and yet does so anyway. You'll find this a lot with school systems as well.

I buckled Hannah into her carseat (while still being hounded by these women in the parking lot) and we left (no I didn't run them over). I was steadfast while I was there, but once I was out of there, I pulled into a parking lot and called my husband (shaking and crying). He reassured me that I did what was right for Hannah. We stopped at a bookstore on the way home and picked up a few new stories for Hannah to enjoy as much as she wanted.

Upon arriving home, I called Mary Camarata and told her of our travails. At that point she said .... let's get you in here so we can see Hannah (they are in Nashville, TN at Vanderbilt University). We had to wait 6 months for an appointment, but as you'll see later, it was more than worth the wait.

OneMom

Our Journey - Part I

My daughter was born in 2001. She was a happy and easy baby, sleeping through the night by three months.

In her development, she was late in rolling over, sitting up, getting her first tooth and walking. When she did reach a milestone though, it was as if she'd been practicing when no one was looking so that she could do it perfectly right from the start. Our pediatrician often remarked that Hannah was developing fine, just on her own timetable and decided we might as well throw out the developmental charts.

At about 12 months, people started bugging her to talk and bugging me with their constant "why isn't she talking yet" commentaries. I started teaching Hannah sign language so she could communicate a want or need. She picked up simple signs very quickly and was able to tell me if she wanted to eat or needed more of something.

I started reading to Hannah right after she was born, and she clearly had favorite stories. I began having small pangs of concern when she wasn't saying any of the words in her stories (dog, cat ... no words ... plenty of jabbering and squeals of joy, but no words). My mom and Hannah's pediatrician fortunately took the "Hannah is Hannah" approach and did not lead me to panic, but reminded me to enjoy my little girl.

At 18 months, there was still no meaningful language. There was a family at our church with an autistic daughter that was a bit older than Hannah and they kept telling me how much Hannah was just like their daughter. This was disconcerting to me as I had known this child for some time, and she was classic autism: anti-social, violent outbursts, repetitive behaviors that she could not be distracted from, and these things did not fit my little social butterfly at all. I spent a lot of time agonizing and trying to analyze if I was just so far in denial that I totally did not see my daughter realistically, or if other people were just being too quick (and unqualified) to stick a diagnosis on my child. After total strangers in grocery stores started "diagnosing" my daughter as being autistic simply on the basis of her language difficulties, I decided that I needed to learn everything about the "new autism" and why the word was being tossed about so casually to stick on every kid that didn't fall into the middle of the developmental bell curve.

It didn't take long on the internet to see that the diagnosis du jour had switched from ADD/ADHD to autism, and that the definition of autism was much broader and so far removed from Kanner's definition that I decided that under these new guidelines, I could now be labeled autistic. I liken the autism spectrum to putting near-sighted people on a "blindness spectrum". I wrote more about this over-diagnosis of autism HERE and HERE.

In Part II of this post, I will talk about how the internet led me to Nashville, Tennessee and discovering a new world (new to me) of language disorders. What I found in Nashville also empowered me to stand up to those pushing autism on my child.

OneMom

Our Late-Talking Journey

Welcome to "A Time to Talk", where I will be sharing with you our family's story of having a child with a severe mixed expressive/receptive language disorder. My daughter Hannah is now 6 years old, and the journey is by no means over. This will be a story of progress. I will spend the first few posts talking about the early days of development, evaluations, and what has worked and what hasn't worked in helping Hannah learn both how to speak and how to understand what others are saying.

As in most journeys there have been moments of great joy and moments of equal frustration. I will paint both sides of the picture for you.

I am not a speech/language professional. I am a mom who has been working with my daughter to develop language and to develop academically, as we began formal homeschooling last fall (kindergarten). I am writing this blog to share what has worked for us and perhaps encourage others who find themselves walking a similar path. Of course if you are concerned about your child's language development, it is imperative that you begin with their pediatrician for a thorough analysis and referral to the appropriate speech pathologists.

The lists of toys and books that you find along the borders of this blog, are specific items that I have found as very useful tools in Hannah's language development. I will be writing specifically about these as days go by.

OneMom