Speech Therapy: "Can you. . . ?"

Sentences with "can" and "do/did" were tough for Sara to learn.
Here is one way we practiced "can" so she would understand as well
as use it appropriately.

Adult:  Can you clap your hands?
Child:  Yes.   [Claps].

Adult:  Can you stand on the ceiling?
Child:  No.

Adult:  You ask me!
Child:  Can you . . . . ?
Adult:   Yes/No. .
etc.

Adult:  Can a person fly a plane?
{We found that "Can you. . . " only worked for questions about
her personally, not about "people" in general.  For these questions
we asked "Can a person. . . " because she hadn't learned the more
abstract form of "you" which means "people".}
Child:  Yes.

Can you. . . ? ideas:
sit in a chair   (Yes)
sit on a cloud   (No)
stand in the shower
stand in a cabinet
close your eyes
close the sky
eat an apple
eat a house

Can a person. . . ? ideas:
ride a horse
ride a mouse
build a house
build a tree
plant a seed
plant a computer

For us, the more important part of this exercise was for Sara to ask us
the questions, so we would ask a few so she could learn the pattern
and then take turns each time so she would have a lot of opportunities to ask
us rather than just answer the questions.

Sara really liked this activity because the "no" questions were funny to
ask.

Cold Sore Connection?

This may seem like a strange thing to write about, but I am trying to
figure out any connection between Herpes Simplex Virus (HSV-1), or
cold sores, and Fragile X Syndrome.

Why do I think there may be a connection?  I thought that my
daughter was allergic to peanut butter, because the first time
she tried it (conservatively at 4 years old), she broke out in a
blistery rash on her chin.  I had her tested several times for peanut
allergies, and each time it came back negative.  She frequently
suffers from cold sores (several per month) and these break-outs
weren't just the typical one-sore-on-the-lip, but multiple ones
all over her lips and chin.  

In looking for information on HSV-1 I found a website (link
below) that recommends avoiding foods high in the amino acid arginine
and eating foods high in the amino acid lysine.  I looked through the long
list of foods, and peanut butter was one of the foods highest in arginine.
Other foods on the list that she ate frequently included chocolate and
strawberries.  

http://herpes-coldsores.com/diet_and_nutrition_with_herpes.htm

In August 2010 I began to strictly limit her intake of chocolate and
strawberries (poor girl!!) and two interesting things happened.  The
cold sores decreased (from 3-4 outbreaks a month to less than 1x/mo),
and her language skills really improved.  HMMMMMM.......
Probably a major coincidence, but it got me thinking. . . .

Fast forward a month or two. . . I was explaining Fragile X Syndrome
to a family member who is a Biology Teacher.  When I told her about
the CGG-repeats in the DNA of a person with Fragile X, she told me
that 3 letters on DNA code for an amino acid.  We looked it up and CGG
codes for--you guessed it--ARGININE!!

Now what does that mean?  I had no idea.  Does that mean people with
Fragile X have too much arginine?  Too little arginine?  I don't know.
PLEASE comment if you have any idea.

How does this relate to her nutritional intake of arginine?  I don't know.

According to the National Fragile X Foundation website:
"Fragile X syndrome occurs when the cells in a person do not produce FMRP 
(fragile X mental retardation protein). "


According to Wikipedia (Source given below):
"Amino acids are critical to life, and have many functions in metabolism. One particularly important function is to serve as the building blocks of proteins, which are simply linear chains of amino acids. Just as the letters of the alphabet can be combined to form an almost endless variety of words, amino acids can be linked together in varying sequences to form a vast variety of proteins."^{[2]    (}^ "The Structures of Life". National Institute of General Medical Sciences. Retrieved 2008-05-20.)    


If amino acids are building blocks for proteins, and the lack of a certain protein 
causes Fragile X Syndrome, what is the connection between Fragile X and the
amino acids in the foods we eat?  


Please Please Please feel free to comment, question, add thoughts, etc.!  I am 
in major brainstorming mode here. . . I need a Biochemist, Dietician, Genetics
MD.,. . . to sit down with me and help me understand the connection.  
Maybe it's obvious, or maybe there is no connection.  

Fragile X: Abstract Concepts

One of the first things I was told about girls with Fragile X Syndrome was that 
they typically have difficulty with ABSTRACT concepts.  


It took me a while to really understand what that meant!   As I watched my
daughter develop and learn during her toddler and preschool years it became
clear to me that these concepts were indeed difficult.   I have copied one  
definition below:

World English Dictionary

abstract
— adj
1.	having no reference to material objects or specific examples;not concrete
2.	not applied or practical; theoretical
3.	hard to understand; recondite; abstruse
4.	denoting art characterized by geometric, formalized, or otherwise nonrepresentational qualities
5.	defined in terms of its formal properties: an abstract machine
6.	philosophy  (of an idea) functioning for some empiricists as the meaning of a general term: the word ``man'' does not name all men but the abstract idea of manhood HOW INTERESTING. . .  #3 says "hard to understand". . . so that means she is having difficulty understanding concepts that are hard to understand!!! Makes sense to me!!! Anyway--before I continue with posts about Speech Therapy activities I wanted to address this issue.  As a Speech Pathologist, I have to take a certain number of continuing education courses per year. This year I took a course on "Processing Disorders"--Language Processing vs. Auditory Processing.  (More on these in a future post.) The course was taught by Gail J. Richard, Ph.D., and she has written several books on the issue, including "The Source for Processing Disorders" and "Language Processing Treatment Activities" (along with Mary Anne Hanner, Ph.D.). These books list language concepts from most concrete to most abstract:    Labeling    Functions    Associations    Categories    Antonyms    Synonyms    Similarities and Differences    Multiple Meanings    Idioms    Analogies Think about the first one. . . the easiest one. . . "Labeling." What do we ask babies?   "What's this?"  "What's that?" We first teach babies to LABEL.  Label people (Mama, Daddy). Label food (cookie, juice).  Label objects (shoe, ball). These labels are often a baby's first words. When Sara started formal Speech Therapy, she was doing pretty well with Labeling (although word retrieval/recall was sometimes an issue--more on this in the future).   So we started working our way down the list, beginning with Functions. I will probably refer back to this list of concepts often--and explain each in more detail, so I wanted to discuss it before continuing on with more activities.   (The next post will address Speech Therapy activities to practice object functions.)

Speech Therapy: Kitchen Game and Clues Game

In moving on from "Where" questions, Miss Lisa introduced some different activities,
including two games I call the "Kitchen Game" and the "Clues Game."  Of course,
we spent several months practicing "Where?," but these were some "games"
to break up the monotony.

Kitchen Game:

It didn't occur to me that Sara did not fully grasp the names and uses of the kitchen
appliances.  (The things we take for granted, huh!?)   I thought Miss Lisa was wasting
time when she started asking Sara these questions, but I quickly saw that we needed
to work on them!

What do we use to keep food cold?  (refrigerator)
What do we use to keep food frozen?  (freezer)
What do we use to bake a cake?  (oven)
What do we use to make coffee?  (coffeemaker)
What do we use to toast bread?   (toaster)
What do we use to heat up food?   (microwave)
What do we use to wash dishes?  (dishwasher)
Where do we keep the forks?  (in the drawer)
Where do we keep the plates and cups?  (in the cabinet)

These questions continued the focus on locations (Where?) and
also target object functions.  (More on functions next post*)

Clues Game:

This is a game I witnessed a friend playing with her child on the playground
when she was two years old.  Of course when Sara and I came home I
immediately started asking her the same questions.  She did not understand.

Fast-forward a year and a half and now Miss Lisa is working on it in Speech,
but with a little more explanation along the way:

"I am thinking of an animal. . . It's black. . . What do you think it could be?"
Sara:  a bug. . .  a dog. . . a horse. . .
"It has a web."
Sara:  A spider!

"I am thinking of a fruit. . . it is red. . . What do you think it could be?"
Sara:  A strawberry!

Other examples:  (After the first two clues, give more clues one at a time until the
guess is correct)

"I am thinking of an animal. . . it has black and white stripes. . .
it looks like a horse. . . "  (zebra)
"I am thinking of a shape.  . . it has three sides. . ."  (triangle)
"I am thinking of a vehicle. . . it is yellow. . . kids ride it to school. . ."
(school bus)

You get the idea. . . I apologize if this is too repetitive.  I want to give enough
examples to help you move on with your own clues!

The Clues Game is still one of Sara's favorites.  It's a great car game for long trips!
Use it to practice locations ("I'm thinking of a toy. . . it's on the top shelf")
and functions ("I'm thinking of a tool. . . you use it to hit nails").

Speech Therapy: Activities for Practicing Locations/Answer "Where?"

At 3 years, 10 months Sara started Speech Therapy (ST) with a local Speech-Language Pathologist (SLP) who accepts our insurance and had one half-hour time slot open.  At first the Speech Therapist ("Lisa") worked on filling in some of Sara's "gaps" that showed up during testing.  For example, Sara understood some locations ('under, next to') but not others ('in back of, in front of').  They worked on these concepts receptively (understanding) and expressively (using them on her own).    In the next few sessions they moved on to answering "Where" questions.

Activity #1:   Understanding and Using location phrases
          Use small people/animals and doll house or doll furniture.
          Stand a doll up behind a chair and ask, "Where is the doll?"
          Child should answer:  "Behind the chair."   If no answer or wrong answer, say
                       "behind the chair. . . the doll is behind the chair."
           Ask child to repeat "Behind the chair"
           Then ask again "Where is the doll?"
Repeat as you put the doll 'in front of the chair, next to the chair, in/on the chair,' etc.
Then switch and child becomes the 'teacher'.  Child asks "Where is the doll?" and adult answers.

 Activity #2:    Understanding and Answering "WHERE" questions

The "WH" questions are often lumped together (especially in written goals, such as
"Child will answer WH- questions with 80% accuracy"), but the WHAT, WHERE,
WHO, WHY (and HOW) questions are very different in terms of difficulty and should
be targeted separately.  For example, "What is this?"  (picture of dog) is much easier
than "Why do you put on a coat?"  In general, the order listed above is easiest
to hardest; just think about the first questions we ask babies. . . "What is that?
What is this?" when looking at toys and books.
        
For this activity, "Where" questions can be asked about the child's most familiar environment-
the home.  The child might give one correct answer and the adult can also mention others.
    "Where do we wash our hands?"  (in the sink/bathroom)  
    "Where can we cook?"   (in the kitchen, on the stove, in the oven, on the grill, etc.)
    "Where do we put our dirty clothes?"   (in the hamper, in the washing machine)
    "Where do we wash our bodies?"  (in the tub, in the shower)
    "Where do we put our plates so we can eat?"  (on the table)
Just like in Activity #1, if the child answers incorrectly, say the correct answer
    and ask the question again.

We would do our best to do "Miss Lisa's homework" between sessions.  It was easiest to do this when we were at her cousins' house after school and my niece and nephew were busy with their own homework.  We tried to keep it short, make it fun with lots of praise and hugs, and generally try to associate homework with having fun/playing games.  Since she is very motivated by snacks, we started giving  a reward once the homework is finished--usually one jelly bean or Skittle.  We've been lucky that this positive association towards homework still continues now that she is in Kindergarten and has "real" homework.




              
 

Initial Evaluation: 3 ½ years old

 As I mentioned in the previous post, I tested my daughter’s language skills before I took her to a Speech-Language Pathologist for formal speech therapy.  I used the Preschool Language Scale-3 [Copyright: The Psychological Corporation] and pinpointed several areas that were most difficult for her.  I don’t know how many of these issues are “typical” for girls with Fragile X, but parents may find some similarities in their own children’s language skills. . .

Receptive Language (Understanding) Difficulties

Negation:   examples  “Which person is NOT eating?”  “Who is NOT sleeping?”
Functional relationship:   “Which [picture] is heavier/bigger/etc.?”
Descriptive concepts:  “Which [picture] is long/short/curly/straight?”
Quantity:  “Which picture shows half a cookie/a whole cookie?”
Time/Sequence:  “Who is first/last in line?”  

Expressive Language (Talking) Difficulties

Answering questions:  “What do you do when you are hungry?”
                                    “When do you eat breakfast?”
                                    “Tell me about your pets.”  
Repeating sentences:  Sentences with more than 4 words.


One interesting thing I noticed is that her understanding was more delayed than her talking.  For most children this is usually the opposite.  Most typically developing children understand much more than they actually say, as do many children with speech/language delays.

The most obvious problem was her inability to answer questions.  We were not able to have the “back-and-forth” conversation that you might expect to have with a child who is older than 2 to 2 ½.   She could answer a very concrete, factual question (such as “What is that?,  What is his name?,  Where are we going?”) but nothing more complex.  She often would go off on a tangential topic (with some of her phrases making sense and others more like babbling/jargon) rather than stay on topic for more than one question/answer.    Although she seemed very “talkative” at home (although much of this was random, stream-of-conciousness self-talk), she was not talking at preschool.  This surprised me, considering how social and outgoing she was at home and with friends, and this was a big reason I contacted a Speech-Language Pathologist.

Many people (none of whom knew her diagnosis) asked me why didn’t I just do the speech therapy.   There were several reasons. . . .

Number 1:  Every moment of my day with her is speech therapy.   I am constantly encouraging her to “say it in a sentence,” modeling appropriate social skills,  correcting glaring grammatical errors, testing her understanding, etc., etc., etc., and I needed another “teacher” to impose a more formal structure, give homework with deadlines, and establish a "school teacher"-type relationship.

Number 2:  I work in Early Intervention, also known as “Birth to Three.”  Once a child turns three I don’t see him or her anymore.  (FYI if the child still qualifies for services, they are provided by the local public school district.)  I used to work with children of all ages, but it had been a while and I didn’t feel like my knowledge of preschool language therapy was as strong as it could have been.

Number 3:   I knew that insurance should cover the therapy because she had a medical diagnosis.  I also knew that other issues probably would arise and I would need a good team of professionals, especially as we prepared for Kindergarten.  For example, many kids with FXS have social, psychological, sensory and/or attention problems as well as language delays.  No parent can be social worker, psychologist, occupational therapist, teacher, doctor and speech therapist to their child, and still have time left over for FUN!!  (At least not this parent.)

Have you ever considered home-schooling your child and then realized that you and your child may not have the ability to separate the “parent-child” roles from the “teacher-student” roles?  I needed a separate professional for this challenge!

My next post will begin to discuss the types of activities we worked on to address these areas of difficulty.

History

Every child is different.  Every girl with Fragile X is very different.  I'm going to give some history here in order to help parents see the progression from diagnosis to elementary school, at least for one child.
My biggest questions about FXS were "How will my daughter progress?" "What can I expect?"  I can't answer that for any one else, but I can go through the development of my child, and some of our experiences may be similar to other families'.    I will try to incorporate polls occasionally to try to collect some information from readers on a larger scale.   (See the first poll to the right.)

My daughter (let's call her Sara) was 18 months old when I got her diagnosis.  I was not expecting those results because she was not exhibiting any signs of FXS at that time.   I just did the testing because I found out that I was a carrier (of the premutation) and the genetic counselor suggested we have Sara tested.  My numbers were something like 30 and 92.    My second fertility doctor (I was trying to conceive my second child) tested me for Fragile X, since I had years of unexplained infertility.  (It turned out to be Premature Ovarian Failure caused by my carrier status.)  It's a wonder I even had Sara.  My first fertility doctor didn't test me for FX--I'm not sure if that was because the connection wasn't known at that time (2004) or some other reason.

I had to request that Sara's pediatrician order the Fragile X test.  She had never heard of it before.  I told her exactly what the genetic counselor had suggested.   When I called the pediatrician for the results, a nurse or secretary told me that everything was fine.  I asked "What are her numbers?" and was then told that Oh, the results are inconclusive. . . another test is being done. . . I'd have to wait for those results.  After about 2 months from the initial blood draw, after being told everything was fine, then after a final conversation with the pediatrician when she told me that Sara was a carrier (incorrect again), I found out that her numbers were 29 and 200-900.  I had to explain to the pediatrician on the phone that "over 200" means she actually had the syndrome.   Ooops.  We switched doctors at that point.

A genetic counselor told me that among girls who have the full mutation of Fragile X Syndrome (number over 200), one third would not have any signs of the syndrome, one third would have some social anxiety and learning disabilities--most likely in math and spatial concepts, and one third would be fully "affected" (autistic behaviors, etc).  I was later told that the "thirds" description was not very accurate, but I still don't really know the correct proportion of these groups or if they can even be grouped this way.  (More on that in the future.)

From that point on I watched her closely for signs of Autism (but felt very fortunate that she was already 20 months and I had not seen any of the signs previously) and learning disabilities.  Let's just say that it's hard to assess a 1 1/2 year old for math and spatial abilities/map reading skills.  I was thrilled when she started screaming in the car when I told her we were going to her friend's house and then headed in the other direction.  Was this spatial ability?  (More on this in the future too.)

Around the time she was 2 years and 8 months I started to notice that she wasn't as verbal as her friends. Of course, doctors/parents/therapists (including me!) will constantly tell you "Don't compare your child to others. . .they each have their own strengths and weaknesses."  But isn't that how we really know when something is wrong??  Don't we only know that there is a problem or delay by comparing them to others?  I tried to tell myself that expressive language just wasn't her strength.  And that coloring wasn't her strength.  And that physical activities weren't really her strength.  And that--yes--she wasn't really as advanced as many of her friends.  At 2 years 10 months, I knew for sure that she was having difficulties in her language abilities. But I also knew that she'd probably test around 3-4 months delayed, and to qualify for early intervention/speech therapy (More on this later!) she would need a 33% delay in language (at least in my state).  How did I know?  I am a Early Intervention Speech Therapist!!  That means that at 2 years 10 months old, she would have to have language skills at a 1 year 10 month level (12 months delayed) or worse.  So I decided to wait and try to do my best to help her catch up.   At 3 1/2, I tested her using a preschool language test (PLS-3) and she was about 5 months delayed. . . still not enough to qualify for the public preschool disabled program.  She was halfway through her second year at a private preschool, which I liked.  The teachers and my husband and I did what we could to try to help her catch up, but she seemed to be falling further and further behind the other children.  At 3 years 9 months she started private speech therapy.  Luckily our health insurance covered it, once a week for 30 minutes.   Unfortunately, without the "label" or diagnosis of Fragile X Syndrome, it would not have been covered.  I sympathize with the many families out there whose children have these issues but have not found the correct diagnosis and therefore are on their own to pay for needed services out of pocket.

My next posting will include (what I hope will be) helpful information about the content and goals of the therapy, and strategies that can work for children with FXS as well as many other language-based delays.   I'm ending this post hoping that I can put up a poll about the age at which other girls were diagnosed with Fragile X.