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!!!

Literacy Ideas

When we first got Chelsea's diagnosis, the professionals told me to not get my hopes for literacy up for Chelsea; she will never be able to read. Well, we started on a journey to prove them wrong! Just this month, Chelsea has started identifying sight words, and here are some of the tips we came up with that helped her!

1. Do sight words that are meaningful!!!! If you try and teach the word "am" or "are"- what motivates a child to learn it? Yes, they are high frequency words, but we need some exciting wins to increase motivation! Words like "Minnie Mouse" or "Jasmine" or "Mommy"!

2. Start with nouns your child LOVES, then move on to motivating verbs! Chelsea loves to jump, so we taught her "jumps", and put it in little phrases: "Mommy jumps" and "Chelsea jumps" and "Minnie Mouse jumps".

Remember: this is not only teaching sight words, it gives practice for speaking, it teaches that words have meaning "Oh, I can make Mommy jump if I put these words together", and it is exciting! Your child can make things happen! Kids LOVE having "power".

3. Make it SILLY and FUN!!!! If each reading lesson is dreaded, your child will learn to hate reading. But if you and your child both enjoy that time, reading will come because it is a highly motivating goal! Make "yummy" and "yucky" cards, and then eat yummy and yucky things and make silly faces! Plus I LOVE Leslie Patricelli's book "Yummy Yucky"

Special Needs Mom Wishlist

What a special needs mom wants for Christmas:

1. A top-of-the-line laminator/ copier with unlimited paper and ink! Oh the printing, copying, stapling, and laminating- Visual schedules, IEP notes, social stories, medical records... I am giddy just thinking about it!

2. A full-on sensory room. I'm talking platform swings, lycra hammocks, foam pits, rock walls and rope ladders, bins upon bins of sensory equipment, a jungle gym... It would be HEAVEN!!!!

Not even CLOSE to what I imagined!

3. Training for ALL Chelsea's teachers, doctors, and therapists. Tailor her education for just her!

4. Books, books, books, and more books. All the Wrightslaw books, disability books, books on reading programs, OT and speech books, fun games for kid books, fun books to read with Chelsea, early books for her to start reading... Plus a library to fit it in.

5. Advocacy training for me! Plus training on just about every aspect of Chelsea's life! I just love going to conferences and workshops!!! (Can you tell I was a TOTAL nerd through all of school? I have fully embraced my identity!)

6. About a million dollars for Chelsea's therapy. Starting out, we paid about $2,000 per WORD worth of speech therapy. Who can say "OUCH!" like our bank account did? 😉

7. Color-coded binders, tab dividers, highlighters, sheet protectors... I just need a bottomless account at an office supply store! Hahaha, I have to go to different stores because I clean out their whole supply aisle!

8. 100 busy bags! I can't even express how much I love these!!! I want them all cute, engaging and fun for Chelsea, that also encourage skills like buttoning, drawing, cutting...

9. An uninterrupted nap. Just because that would ROCK!!! Any sleep is amazing! I think any parent can relate here! Guys, parenting is really, really tiring!!!

Thanksgiving Gratitude

As a special needs parent, it is easy to complain. But there have also been so many blessings that have been poured out upon our family, and I want to focus on those during this Thanksgiving season.

1. We have made so many wonderful friends! I never would have met these incredible people had we not been in special-needs groups, conferences, etc. They inspire me!

2. Chelsea has opened my eyes to the beauty of each and every accomplishment; every achievement is a mountain to conquer, no matter how seemingly small others find them.

3. Our family has become more accepting. We go out of our way to be kind to those with disabilities. Not because we pity them, but because we know how much they contribute, and how lonely they probably feel.

4. I have learned so much- about disabilities, speech development, fun therapy games, special ed law, how to stand up for what is right, and how to love more completely.