2016 Re-Cap

What a year 2016 has been!!! I am so proud of how far Chelsea has come! Here are some January/ December comparisons from 2016:

Speech:

January 2016- 100 words, 600 word approximations paired with generalized signs. Strangers understand none of her speech other than "mama", "baby", and "Daddy"

December 2016- Says about 400 simple words, about 800 word approximations paired with generalized signs. Strangers understand maybe 75 words

Reading:

January 2016- Knows all uppercase letters, knows 7 lowercase letters. She can recognize her own name.

December 2016- Knows all upper and lower case letters, but sometimes mixes up q, b, p, d. Can identify several sight words and is understanding that the letters on the page mean something! She will sit and independently look through books for extended periods of time (30-60 minutes). Starting to try and read early reader books like "Ham and Jam"

Writing:

January 2016- Sometimes held pencil correctly, can write C and sometimes H. No tracing seen.

December 2016- Can sometimes write her own name in very large letter, and can trace a few letters (O, C, H, L, T) and some basic linear patterns, almost always holds marker/ crayon correctly

Potty Training:

January 2016- In diapers full time, no concept of when she was going, didn't tell me ever that she needed to go.

December 2016- In underwear full time, knows when she is about to go and signs and says "Potty", "pee-pee", and "poop" when asked. Still struggles with wiping and washing hands independently. Mommy nearly lost her mind multiple times this year getting her to this level! I think her record was 28 accidents in a SINGLE DAY!

Self-Help Skills:

January 2016- Usually follows simple, one-step directions (Pick up the ball), no hygiene skills, struggles to get on any clothes, struggles with cleaning up independently

December 2016- Attempts to brush teeth and hair, will usually follow more complex one-step direction (clean up your art project) or simple 2-step directions (get your clothes and bring them to me), puts on underwear and most shirts, skirts, and shoes by herself. Needs help with more difficult clothes- dresses, socks, things with buttons or zippers, helps with chores she has done repeatedly (putting clothes in hamper)

OT Skills:

January 2016- No cutting skills, can draw a "happy" face (with a straight line for the mouth), poor pincer grasp

December 2016- Starting to cut independently by opening and closing scissors, writing more letters and tracing better,

strong pincer grasp and is holding pencil correctly for long periods of time

PT Skills:

January 2016- Can run for 20-30 seconds at a time, and jumps off floor with two feet, Steps off bottom step with one foot, cannot consistently alternate feet on stairs

December 2016- Can run for 1-2 minutes at a time, and can jump from bottom step to the ground with two feet. Alternates steps going up and down stairs regularly.

Therapy with Stickers

One of the things Chelsea loves is stickers! She LOVES doing things with stickers, so several of our therapy activities revolve around them, plus- stickers are AWESOME for pincer grasp, which took Chelsea years to fully master! Some of our favorite activities include:

1. Color matching stickers! One of the Christmas break activities we did this year was making snowmen in several different ways. One of them was doing a matching color snowman, and putting the right colored dots on the outline of a snowman! Then we would draw on features once we were done.

2. Cross midline to peel off stickers! This is SO good for your brain! Often, kids with learning disabilities will switch things from hand to hand in the middle, rather than crossing across their body. My favorite way to combat this is to put stickers on the child's upper arms. That way, they HAVE to cross the opposite arm to reach the stickers!

3. Make designs with circle stickers! This one makes a great busy bag for restaurants or waiting in line- just cut paper or cardstock into fourths, then draw a design or letter out of little circles, and have the child place the stickers to form a letter! This works hand-eye coordination. You can also get super educational and put stickers that start with T (turtle) onto a T outline, etc.

4. Group like stickers! This is especially fun with animals. Classify big/ little, or noisy/ quiet, or farm/ jungle, or colorful/ earth tones... So many choices! I like the Melissa/ Doug re-useable stickers for this activity, which also are amazing because they stick to windows!!!

5. Create a scene and write a story! Let the creative juices flow! I like the paper that is half for drawing/ putting on stickers, half for writing- and write a sentence or two (dictated by Chelsea) that Chelsea then traces, and tells. This works cognitive by thinking of a story, speech- telling the story, fine motor- tracing the words, and then social skills in a show/ tell method.

I just know Chelsea will get to the "Dot on ___" of reading!

6. "Dot on _______" There are SO MANY dot-shaped stickers, and "dot" is easy for Chelsea to say. So an easy go-to speech activity for us is putting dots onto target words and saying "Dot on boat" or "Dot on hummus". It can be easily changed with "Minnie Mouse on _____" or "Mommy on _____", but dot stickers are much cheaper and more common!

Christmas Break Fun

Chelsea is out of school until a few days into January, so we have lots of time for fun at home!!! Since she isn't in school, I try and sneak school work into fun holiday activities. Here are a few that we have done:

1. Create an activity advent calendar! Kids with learning disabilities often have difficulty "filing" information in their brain, so have activities that they can see, hear, feel, and experience!!! Multi-sensory approach to the holidays!

For example, if I say "Christmas", then your mind fills up with information, which you can classify into "ornaments" or "Santa" or "Nativity"- and so on. But kids with learning disabilities don't have a brain that naturally files things, so they need extra exposure to the vocabulary.

Activities can be things like: go see Christmas lights, decorate the tree, shop and wrap gifts, visit Santa, go on the Polar Express, see a living Nativity, go caroling...

2. Read, read, read!!!! I like to pair this with videos and activities- the combination seems to really drive it home for Chelsea. So read 10 Rudolph books, sing the song several times, then watch the movie! Or read the Grinch who stole Christmas, watch the movie, and do an activity to make his heart "grow"!

3. Use art to get excited for Christmas! Color pictures, do crafts, make ornaments for the tree, send a picture to Grandma... So much fun! Practice that pencil grip and color away! So a sensory sprinkles tray and draw in letters!

4. Sneak in that learning! Make a paper chain counting down and work on 1 less every day as we tear it off! Or a Christmas tree "pyramid" that has the child order 1-10.

Do an uppercase/ lowercase paper tree ornament matching activity, or sequence the story of the First Christmas! Make candy cane patterns- either on paper with red and white colors, or with candies on a plate!

5. Creativity! One things my kids love to do is come up with stories! For Chelsea, it is usually a multiple choice- "If Santa was stuck in my chimney, would I tie balloons to his feet, pull with a rope, or pull him out?"

and my little man likes open-ended questions "If I was an elf at the North Pole, I would like a job as..." Write down the dictation, then allow the child to trace the letters and illustrate!

6. Use food as fun!

Decorate themed sugar cookies or gingerbread men/ houses, or make a veggie Christmas tree, or make Santa pancakes! 

7. Therapy SHOULD be fun! Do candy cane beading for OT! Or practice saying "Santa" for speech as you play a Santa game! Play "Run Run Rudolph" for physical therapy!

8. Sing, sing, sing!!! There are SOOOO many Christmas songs out there! Sing about snowmen, reindeer, Jesus, Santa, family together, the Grinch...

Dyslexia

Last month, our school district put on a wonderful workshop all about dyslexia that I was lucky enough to attend. There was so much information that it was hard to condense it into a single post, but I will do my best!

Early Warning Signs (preschool- 3rd grade)

• Late learning how to talk, lower vocabulary than is age-appropriate
• Failure to understand that words are made up of parts or individual sounds
• Difficulty learning the letter names and their corresponding sounds
• Difficulty reading single words in isolation
• Difficulty reading fluently
• Difficulty spelling phonetically
• Difficulty with word retrieval/ naming
• Difficulty following directions

Working with Audiobooks Helps Kids with Dyslexia and Improving Literacy:

• Listening to audiobooks and following along help your child become a better reading, particularly for those with dyslexia
• Your child will become a more effective learner by listening (they focus on the meaning of the words, rather than decoding)
• Increases self-esteem and confidence- eases frustration with reading
• Fosters motivation and a natural love of stories

How to start with audiobooks:

• Start with 3-5 high interest titles
• Set aside plenty of time to practice listening
• Use comfortable good quality headphones
• Be flexible; maybe your child wants to listen while lying in bed or coloring a picture
• Experiment with pitch and speed to find the right fit
• Read along with your child and discuss the story

*But remember: Audiobooks are not a replacement for good reading instruction!

Other Related Disorders:

• Dysgraphia- difficulty with handwriting, poor/ slow handwriting, messy papers, difficulty copying, poor fine motor skills, unsure of handedness
• Dyscalculia- difficulty with math, counting, misreads numbers, hard time memorizing math facts, etc

• ADHD- difficulty with attention, distractible, impulsive, hyperactive
• Dyspraxia- difficulty with motor skills, uncoordinated, struggles to motor plan
• Executive functioning difficulty- loses papers, poor sense of time, forgets homework, messy desk, overwhelmed by too much input, works slowly, "out of sight, out of mind"

• Memory problems
• Needs high levels of repetition to learn
• Difficulty with written language (hard time putting ideas onto paper)
• Difficulty with rapid naming (colors, objects, letters, numbers) This means when you fire off questions "What is this? This? This? This?" really quickly.

A "reading" rapid naming. This could be done with colors, letters, pictures or people or objects, etc

Areas that May Need Work
After reading through this next list (for JUST reading work!!!), I felt torn. I was glad that there was the information out there, available for me to access to help my child, but when her needed school, therapy and home practice time totals up to more than 20 hours daily... What on earth am I supposed to do? That doesn't even include the time I have to invest to research these aspects of reading development and preparing the materials to implement it!

There will always be something that doesn't get done, which leaves us as special needs parents feeling simultaneously like we are failing our kids by not getting them the help, and sticking up for them- because NO ONE can maintain an 20 hour/ day schedule of people focusing on what you struggle with (or even be awake that much!), so why would anyone try to impose that ridiculous schedule on our sweet babies??? Just my 2 cents.

• Oral Language
• Vocabulary
• Listening comprehension
• Verbal expression
• Written expression
• Handwriting
• Memory for letter/ symbol sequence
• Mathematical calculation/ reasoning
• Phonological memory
• Verbal working memory
• Processing speed

The delivery of reading tutoring is very important. Think about not only what you are going to teach, but HOW you plan on teaching it.

Good way to work on letter matching! Increase number of letters and speed

• 3 Rs- Rhyme, repetition, and rhythm
• Multisensory work- visual, auditory, tactile simultaneously (THIS IS MY FAVORITE!!!! SUPER SUCCESSFUL WITH BOTH MY KIDS!)
• Systematic and cumulative
• Very intense!
• Automaticity!
• Start small and build up so it is incremental and painless
• Analytic instruction

The Brain and Dyslexia

• The inferior frontal gyrus "Broca's Area"- used for vocalization and articulation
• Parieto-temporal area- responsible for word analysis
• Occipito-temporal area- Controls word recognition and automaticity
• Left side of brain- "Sees" the word
• Right side of brain is for thinking.

*Fun Fact* Dyslexics re-route language through the right side of the brain. This is why some people have "bizarre" ways of remembering things- their brains have re-routed the information to be accessed by the "stronger" side of their brain, even if it doesn't make sense to others. 20% of people have some form of dyslexia, which would indicate this isn't a "wrong" way to think, just different.

Skill Area developed by:

• Starting with a 1 step task
• Add more incrementally
• Using multi-sensory techniques
• Provide multiple opportunities for practice
• Transitioning to final goal of smooth automatic processing (frees up the working memory!)

Support Group Power

Before I found the SATB2 Associated Syndrome support group on facebook, I felt very alone. I didn't belong with the "normal" moms- it made them uncomfortable when I discussed the disability. Nor did I belong in the medically fragile kids group- they rolled their eyes when I would mention that no, Chelsea has never been hospitalized for a cold. Same with Autism, Down Syndrome, and other "more common" disorders- I never fit in.

For the longest time, I just thought I must be a horrible mom, since everyone else's kids were doing so much better than Chelsea; she was my first and I had no nieces or nephews to compare against. I was completely convinced that everyone else knew a secret about parenting that I was totally ignorant of- why else would my perfect baby need 4 hours of physical therapy practice each day to learn how to crawl?

I first found some support from my aunt, who has 2 autistic kids of her own, and knew the feelings I was going through, even if I was still in denial about it myself. I also had my older sister, who is an ABA therapist, who was able to give some great ideas on how to work with Chelsea.

It wasn't until Chelsea was nearly 5 years old that we got her genetic diagnosis- SATB2 Associated Syndrome/ Glass Syndrome (Same thing, different names) and looked for an online support group. With only 50ish kids worldwide diagnosed, the support group has to be online (and thank you to google translate!!!!) because none of us live very close to each other.

That facebook support group has been a lifeline for me! I talk to other SATB2 parents about the daily struggles, as well as successes, and they are there for me- to offer advice, console me on hard days, and celebrate for Chelsea when she has good days.

The support group is private and only for parents of SATB2 kids, so that we can openly discuss issues that we don't feel comfortable sharing publicly. Even with my over-talkative nature, I still have issues I don't want to discuss with anyone else. I will be eternally grateful for all of the support they give me!

Speechless

I am not a big TV person- we don't even have our television connected at our house. BUT, I will look up a couple shows online, and my very favorite is "Speechless".

This is a show about a teenage boy who has cerebral palsy and has a super advocate mom, and his life in high school. A couple things I LOVE about this show:

1. The star actually has cerebral palsy. Anytime I hear of a person with a disability living their dreams, it gives me so much more hope for Chelsea! She can live her dreams too!!!

2. It shows a person with a disability as normal. This is a kid who likes girls, wants to go to high school parties, teases his siblings, everything! People are people, regardless of disability.

3. It shows some of the cold, hard realities of having a child with disabilities. Sometimes the walls won't get painted, the yard work and laundry will go undone. Sometimes your other kids feel less important or left out, because their sibling has greater needs.

4. It makes me laugh, and I need that! Watching this show is one of the best parts of my week because I get to laugh about the craziness of life with a child with a disability, and some of the antics we get up to (like making a principal cry).

5. It is a whole lot easier to watch a show and become more comfortable with the idea of talking to a person who uses alternative communication devices. I know it makes people uncomfortable when someone is "different"- I used to feel the exact same way!!!