Monday, April 29, 2013

Our first fundraising event!!! June 1, 2013

http://www.crowdrise.com/CharlieMason

BENEFITING: National Fragile X Foundation
EVENT: Walk for Fragile X Families of Northern Virginia
You are the Organizer of this Fundraiser
THE STORY:Fragile X Syndrome is the most commonly inherited cause of intellectual diability. The FMR1 gene on the X chromosome is responsible for the deficiency of the FMRP (Fragile Metnal Retardation Protein). Symptoms can include: learning difficulties, autism, severe anxiety, seizures in 20-25% of boys, attention deficit, and hyperactivity. FX affects 1 in 4,000 boys and 1 in 6,000 girls. FX is carried by 1 in 260 women and 1 in 800 men. A woman who carries the gene that causes an X-linked condition has a 50/50 chance of passing it to a child, whether it is a son or daughter. This is because she has two X chromosomes, and she passes one or the other for a son or daughter. A man with the same X-linked gene passes it to all of his daughters and none to his sons. This is because he passes his only X chromosome to his dauthers and his Y chromosome to his sons.
Charlie, who is 6 years old and Mason, who is 3 years old had genetic testing which led to the discovery of our Fragile X diagnosis just last September. Corry had a repeat (or genetic stutter) (77) on one X chromosome. This caused the full mutation to be passed on to Mason. Charlie is a mozaic (meaning he has some of the protein produced.) We have learned a lot! For instance, the number of genetic repeats does not correspond to the intellectual ability of the person with FX. The range of ability varies from mildly affected to severe. Early intervention is crutial! We have come a long way! While developmental delays may cause the boys to adapt to learning on a different level, we are proud of the fact that they are continuing to learn daily! Behavior and potty training remain difficult. The inability to express themselves seems to be the determining cause of acting out at times. They also get overstimulated which makes going places very challenging. We thank you in advance for your contribution. Research and early intervention really play a role in whether our children and other children with Fragile X can live independent lives.
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Had to use a FUN picture!  From October when we got snow before Halloween! 

From Buffy Grande...Northern Va, Maryland, D.C. peeps....you'll wanna see this!


Friends and Family,

Most of you know that we have a 7 year old son (Jimmy) who has special needs - Fragile X Syndrome. He has been a true blessing to our family and we're amazed at what our son can teach us without words.

We're both in...volved with the Fragile X Foundation and with our local group - Fragile X Families of Northern Virginia.

If you live in the DC metro area, will you join us for our 2 mile Family Fun walk. We are trying to raise awareness and support for both Fragile X research and our 2nd local Fragile X Conference to educate our teachers and therapists on the latest and best methods for teaching our children with Fragile X.

If you do not live locally - please consider donating to our walk (TEAM JIMMO) and read more about all the local families that have teamed up to raise awareness and support.

A huge huge thank you to all our family and friends who have already donated. We're truly humbled by your generous donations. It's been so exciting to see our friends support us from near and far away!

Fragile X Families of Northern Virginia First Annual Walk

Date - Saturday, June 1st 2013
Time - 8:30AM
Place - Burke Lake Park, Fairfax Station, VA

You can find all the details at our fundraising site.

Thank you again for supporting us - go TEAM JIMMO!!!!

http://www.crowdrise.com/2013FXwalkNOVA
See More

Sunday, April 28, 2013

Music for verbalization paired with play!

Using Music with Children with Special Needs

http://www.alsc.ala.org/blog/2011/11/using-music-with-children-with-special-needs/

I relish the opportunity to sing and dance, as I’m sure many of us do during storytime programs. But when I started working with children with special needs, I realized I had to be more thoughtful when selecting songs for an inclusive audience. For example, many children with autism have an aversion to music. High-pitch singing, loud volume, or fast beats could cause a child to cover his ears in discomfort. Following along with the lyrics of a song while imitating a librarian’s movements could be equally confusing for the child. Processing both visual and auditory information at the same time is a challenge for those with sensory processing disorder. Some children may not be able to stand without assistance or may have other limitations with their mobility. In this case, establishing an expectation for children to “dance” or “jump around” may not be feasible for every child. At first, there was a lot of trial and error, but eventually I found music can be utilized quite successfully with children with special needs. So, here are some tips I’ve picked up along the way.
One way you can use music in a program with children with special needs is to do what I like to call “song stretchers.” These can be brief one or two minute songs that provide an opportunity for children to release energy and move around. I like to choose an activity that can be completed or easily modified to accommodate all children. Jim Gill has a wonderful song called “My Ups and Downs” on his CD Do Re Mi on his Toe Leg Knee. The melody, played by only a few instruments, is essentially a chromatic scale with notes that slowly ascend and descend. At the beginning of the song, I lead children in pretending we are very small with our knees bent and hovering close to the ground. As the music ascends the scale, we all grow taller reaching our bodies way up high stretching our arms out. As the melody descends the scale, we all shrink in size slowly bending our knees coming closer to the ground…until the music starts ascending again, and then we repeat. What I love most about this song is that it can be easily modified for those with limited mobility. A child with cerebral palsy, for example, may only be able to move their arms slightly up and down. But this activity allows the child to still be able to participate, feeling included in the group. Jim Gill has many years of experience leading musical play groups with children with special needs. It really shows in his music–it’s fantastic and I use it every chance I get!
Another way I like to use music is by leading a structured activity incorporating the music as the guide. Bean Bag Fun by Laura Johnson and Diane Waldron is an oldie, but a goodie! This CD is a collection of songs with instructions to activities involving bean bags. “Bean Bag Kickline” allows the child to practice their eye-hand and eye-foot coordination by kicking a bean bag across the room. ”Bean Bag Carousel” is a great track that offers the child an opportunity to practice sharing by tossing and catching a bean bag with a partner. Sometimes you might rather design your own activity or give instructions at your own pace. With this CD, it’s easy–there is an instrumental version for each of the tracks. Music can be used to have fun, but providing a structured activity with the music can offer an opportunity for learning. These activities can also help children to develop their gross motor skills, increase balance, and learn the difference between left and right–an added bonus!
Giving a child the chance to march to the beat of his own drummer, so to speak, is perhaps the easiest ways to utilize music with children with special needs. And my favorite item to use during free dance is a scarf because it can be used in so many different ways. Scarves can be used to identify different parts of the body (“Put the scarf on your elbow. Now put the scarf on you head. Can you balance the scarf on your knee?”). They can also be used to practice shapes (“Make a circle with your scarf. Now make a triangle. Now use the other hand.”). You can even hide objects underneath scarves, allowing the child to experience object permanence. Of course, you can always just wave the scarf around in the air, too! What I like about the Musical Scarves & Activities CD is that it’s collection offers the option of both free dance and activity-based songs. Tracks like “Round and Round” and “Let’s Go Fly A Kite” allow children to practice hand and arm movements while waving their scarves, whereas tracks like “Take Me Out to the Ball Game” and “Under the Sea” are opportunities for children to work together in a group. Using scarves not only increases the amount of sensory input in your program, but they are a fun prop to enhance the musical experience.
I love music, but it’s particularly beneficial to use with children with special needs. The repetition and rhyme from lyrics build language and enhance communication, which is essential for any child with autism. During musical activities, we also provide opportunities for a child to interact with other children in a group setting, allowing them to practice social skills. If you notice a song is not being well-received by your audience, there is nothing wrong with ending the song early and moving on to the next activity. Every child is different and may react differently when introduced to a new sound or song. But I’ve found that when songs are presented slowly, clearly, and with careful focusing of the child’s attention, music can be enjoyed by everyone.

We have this: and LOVE it!



http://www.walmart.com/ip/Singing-Machine-CDG-Karaoke-System-with-Disco-Lights-SML-385/12311605























 

DSM changes as related to autism and pdd nos

http://autismandoughtisms.wordpress.com/2011/08/15/the-4-main-dsm-5-autism-controversies/

Saturday, April 27, 2013

I hope Charlie feels loved. Because he is.


Researchers reverse Fragile X Syndrome symptoms in adult mice - MIT News Office

Researchers reverse Fragile X Syndrome symptoms in adult mice - MIT News Office

Thanks be to God!

Top 10 things I want to share about my six year old son with Fragile X:

10. He learns by repetition.  He needs a visual schedule to reinforce "what's next".  This helps ease his anxiety.   

9.  He is very visually oriented.  He may have some impairment but he remembers faces and places very well!  He can tell me exactly how to get home and tells me if I need to make a right or left and is very accurate. 

8.  He is motivated to help!  Give him a task.  Watch him try very hard to please you.  He loves it!

7.  He is empathetic.  (I'll never forget during a soccer game he was more concerned about a boy on the other team who had been kicked than running after the ball while everyone else was still focused on the game.)

6.  He loves food!  He eats most anything.  And he eats often!  So what if he wants food often.  He burns it off quickly and he generally enjoys healthy foods. 

5.  While I try to limit his t.v. time, he is most motivated by the shows he loves.  His favorite is Dragons: Riders of Berk.  While he watches some "big boy shows", he still enjoys the toddler age shows.  I see nothing wrong with a combination of the two.  It's a great way for him to relax in the morning and evening.  The tv is rarely on during the middle of the day. 

4.  His interactions with his brother seem like rough play but they both play rough and laugh the whole time.

3.  I pick my battles with correcting him.  Don't assume that he's doing something bad.  Often I encourage him to do things on his own.  Imagine the limitations he had all day and what it would feel like if you had the opportunity to do something for yourself.  You would also jump at the chance!

2.  His behavior stems from his environment and how comfortable he feels.  He gets overstimuated.  It looks like he is misbehaving but he's really trying very hard to fight the urge to act out.  And if he is acting out, it's not entirely his fault.

1.  He is loved and makes his parents proud everyday.  He's not that different.  Just because he cannot express himself does not mean that he doesn't understand everything that is going on around him.  Treat him with respect and you will get respect in return. 

Abilify

http://www.webmd.com/brain/autism/news/20091130/abilify-treats-autism-related-irritability

This article relates irritability to autism but we seem to have straight FX symptoms in Charlie.  Regardless, we are finding the abilify to help!  We are also on stx 209 and finding it to be helping. 

If anyone knows of a trial for a 3 year old on the east coast (we are in Harpers Ferry, WV), please contact me.  corrymill@hotmail.com

Thank you! 

We are considering starting a low dose of zoloft for Mason.  He has a lot of irritability, difficulty dealing with transitions, and attention seeking behaviors.  Has anyone tried the zoloft/minocycline combo?

Great products for less!



MULA
Stack &nest cups
$3.99
MULA
Stack &nest cups
$3.99


MULA
Abacus
$12.99

 



Crane with blocks $19.99
 
 
 

EKORRE
Hanging seat with air element, silver color
$44.98







Cleveland Clinic Reference: Still consult with your doctor!

This chart is meant for reference ONLY and should not take the place of a health care provider’s advice. Discuss any questions about medication with a health care provider.
SymptomGeneric Medication (Brand Name in Parentheses)
ADD: attention deficit disorder; ADHD: attention deficit hyperactivity disorder; TTS: transdermal therapeutic system.
Seizures
Mood instability


  • Carbamazepine (Tegretol)
  • Valproic acid or Divalproex (Depakote)
  • Lithium carbonate
  • Gabapentin (Neurontin)
  • Lamotrigine (Lamictal)
  • Topiramate (Topamax) , Tiagabine (Gabitril), and Vigabatrin (Sabril)
  • Phenobarbital and Primidone (Mysoline)
  • Phenytoin (Dilantin)
Attention deficit
(with or without hyperactivity)

  • Methylphenidate (Ritalin, Concerta) and Dextroamphetamine (Adderall, Dexedrine)
  • L-acetylcarnitine
  • Venlafaxine (Effexor) and Nefazodone (Serzone)
  • Amantadine (Symmetrel)
  • Folic acid
Hyperarousal Sensory overstimulation
(often occurs with ADD/ADHD)


  • Clonidine (Catapres TTS patches)
  • Guanfacine (Tenex)
Aggression Intermittent explosive disorder
Obsessive-compulsive disorder
(often occurs with anxiety and/or depression)


  • Fluoxetine (Prozac)
  • Sertraline (Zoloft) and Citalopram (Celexa)
  • Paroxetine (Paxil)
  • Fluvoxamine (Luvox)
  • Risperidone (Risperdal)
  • Quetiapine (Seroquel)
  • Olanzapine (Zyprexa)
Sleep disturbances

  • Trazodone
  • Melatonin

NFXF-funded Drug Research Shows Promise in Behavior Improvement

NFXF-funded Drug Research Shows Promise in Behavior Improvement

Monday, April 22, 2013

Ahh Choo!

Local honey is produced by bees usually within a few miles of where the person eating the honey lives. There's no real rule of thumb on how local the honey has to be, but proponents suggest the closer, the better [source: Ogren]. This proximity increases the chances that the varieties of flowering plants and grasses giving the allergy sufferer trouble are the same kinds the bees are including in the honey they produce. After all, it wouldn't help much if you ate honey with spores from a type of grass that grows in Michigan if you suffer from allergies in Georgia




http://health.howstuffworks.com/diseases-conditions/allergies/allergy-treatments/local-honey-for-allergies.htm

1 Dozen Easy Oatmeal Cookies

  • 1/4 cup sugar
  • 1/2 cup all-purpose flour
  • 1/2 cup margarine
  • 1/2 teaspoon baking soda
  • 3 (48 g) envelopes instant maple and brown sugar oatmeal (but any flavor should work) or 3 (48 g) envelopes instant apple and cinnamon oatmeal (but any flavor should work)

Directions:
  1. Preheat oven to 350 degrees.
  2. Lightly spray a baking sheet with non-stick spray.
  3. In a medium bowl, mix all of the ingredients together.
  4. Using your hands, roll dough into 12 balls, flatten each one slightly and place them on a baking sheet.
  5. Bake for about 15 minutes.
  6. Remove from oven and let sit for 5 minutes before placing cookies on a wire rack to cool.
 
http://www.food.com/recipe/just-1-dozen-easy-oatmeal-cookies-211115

Nana's Oatmeal Pancakes (from Vickie)

3/4 cup oats &1 1/2 cup milk}Set aside 5 mins

Mix 2 beaten eggs and 1/4 cup oil
1 1/4 cup flour
1 tbsp baking powder
2 tbsp sugar
1 tsp salt

Mix and add together

Enjoy!



Oatmeal bars from cooks.com

QUAKER FRUIT `N OAT BARS
2 c. oatmeal
1 c. flour
3/4 c. butter, melted
1/3 c. brown sugar
1/3 c. nuts
1/2 tsp. baking soda
1 (10-12 oz.) jar no-sugar fruit preserves
Grease an 11 x 7 inch baking dish. Combine all ingredients except preserves. Reserve 3/4 cup of oat mixture. Press remaining oat mixture onto bottom of dish. Spread preserves up to 1/2 inch of edge. Sprinkle remaining oat mixture on top. Bake at 350 degrees or 20-22 minutes.

Saturday, April 20, 2013

Use a paintbrush

On the Aquadoodle!

Perspective....

I decided to take both boys out to dinner by myself tonight to Red Robin. (I had salad but the burgers smelled sooo good!) It was a very nice experience! Instead of feeling embarassed when Charlie gets overstimulated and wants to stand next to his chair and jump up and down and make noises, I let him do it. We turned some heads but who cares. If anything, it made me feel good to go out and do something with the boys and to feel proud that we were able to do it by ourselves. (Dad is out with a friend.)  Then I noticed a well know anchor for a local news network sitting right across from us with his family. Without ever looking at the young boy that was with him, I noticed he seemed to be a tad hyper too! I overheard them playing the quiet game and lots of other fun little games. It made me think about things for a bit. We all have our own struggles. But improvising and making a tough situation fun can turn it all around. Thank you for that little lesson this evening God! I needed that. ♥ ♥ ♥ my boys!

Colors

Don't put away those Easter Eggs yet!

Make some games with them...learning Colors!


Butterflys


{Paper towel or toilet paper rolls, foot prints, pipe cleaners, fuzzy balls, and wiggle eyes}

I had awesome OT experience and now mommy made me a bag just like Ms. Sandy's!

Gotta give props to Ms. Chrissy and to Lacy too!  We had a great team! 
 



Complete with beans in a container for scooping and pouring and pairing the actions with words.  A block style wood puzzle.  Peg board.  And Ms. Chrissy's cool idea of using those little soft balls in a container with shapes cut into the lid.  Mason really calms down after I sit with him and we work on his sensory play items. 

B (Bouncy house, Balloons, Blankets, and Boys)

 
 
Great sensory play!  Who needs a ball pit!  They love this!

Games to get them to talk!


I play the role of dispatch.  They fight the fires!  I gave the megaphone that sounds the alarm to Charlie a few times and directed him on what to say.  Either way, they would laugh so hard when I would say, "Ahhh, we are done.  Time for a rest!".  And they would make it go off again.  I'd jump up and yell, "We've got another emergency!". 

And playing dress up! Here's Aiden as a pirate!

We also protected the castle (bouncy house) with our swords.  We launched the balloons as cannons too. 

Uh oh! Lil bro's taking your ride Charlie!


Fun day at the movies!

May I suggest The Croods!!!!!  Charlie had a great time laughing throughout the whole movie!  It was high energy and funny.  During the previews, he was saying, "mommy, daddy, I go home!".  It was a bit too loud and too many images that could be overstimulation to children with problems that cause sensory issues with the messages about the snacks and turning your cell off.  But once we got past that, it was a very fun experience.  This was his first movie theater experience that was honestly worth the money.  And to top it off, Mason got to walk around Reston Town Center with Nana and Papi.  It was a beautiful day!  And the ferrari show made it fun too!  (That was an added surprise.) 







Friday, April 12, 2013

Learning FX style

 

 

 

What are some important teaching strategies?

Teaching strategies built into the IEP for school-age children should focus on individual learning styles and include:
  1. Awareness of learning style:
  2. Use of simultaneous processing activities; 

  3. Whole word methods for reading and spelling;

  4. Visual cues, including pictures, sign language, logos, and words;

  5. Concrete, high interest examples and materials;

  6. Modelling and imitation, for both behavioural and communication goals;

  7. Integration of self-help goals with language and motor goals (eating, dressing, toileting);

  8. Inclusion of functional skills, along with academic;

  9. Highly structured, predictable routines, with visual cues for changes in expected events;

  10. Opportunities for calming.
Inclusion or mainstreaming into the regular classroom is recommended whenever possible, so that the child will have models of normal behaviour in the classroom and will learn appropriate social skills. The regular classroom assignments can be modified by an educational aide or special education teacher, so that the child can complete an appropriate amount of work without excessive frustration.
Source: http://www.fragilexcanada.ca/index.php?id=110,0,0,1,0,0

Bud to blossom


So it turns out that we thought we had a solution for Charlie.  The school has tried everything they know to do and they called in a BCBA.  (Board Certified Behavior Analyst)  The verdict was to send him to a private school with a low ratio.  We were all on board to do so, thinking it would be better suited for his problem behaviors because they are trained to work with these challenges.  But it turns out that Charlie would be 5 years younger than the children in the class and that he is at a different level of learning.  So we are back to the drawing board.  But you know what?  I'm not disappointed at all! 

This just means we have to really think about what is best for Charlie.  I've read some blogs of FX parents who have faced the exact same situation.  The great thing is that the school is more than willing to work with us to help Charlie and we still have the BCBA on board with assistance for shaping his behaviors. 

While pulling all of the dead growth off of my garden beds it made me think earlier.  This situation is much like what has happened (here in the eastern panhandle of WV, anyway) with the weather this spring!  Just yesterday, Charlie and Mason were in swim shorts jumping on the trampoline with the sprinkler on.  It was so weird to take pictures of them in the hot sun (83 degrees) with our cherry tree in full bloom.  But it made me think...

Change happens when it's meant to.  You can't force nature.  The year before last we got our first snow before Halloween!  The trees had leaves on them and were covered in snow! 

And it brings me back to our situation with Charlie.  He is going to blossom.  He IS blossoming.  It just takes some tailoring to get the learning situation just right.  And it can only help his little brother.  With the school system being so willing to help us, the assistance of the BCBA, our input, and the advances that are being made with research, this little boy is going to bloom.  And bud to bloom, I'm enjoying the process. 

Redbud Blossoms (my late father's favorite tree)


Thursday, April 11, 2013

Spring but more like Summer!

Mason
 
 
Charlie
 
Helping mom with the garden!
 
 

Excellent article on Sensory Processing Disorder (SPD) from Parents Magazine:

Treatment consists of carefully designed, multisensory activities that challenge one or more sensory systems simultaneously -- such as swinging while throwing beanbags at a target, which presents both a vestibular and a visual challenge. The goal: to help build neural pathways that can lead to appropriate responses to information that comes into a child's brain through the senses. This is time-consuming and requires frequent repetition, but it's necessary. "Nerves that fire together wire together," explains Biel. "So each time you practice something, you strengthen the neural connections so that it eventually becomes automatic."

http://www.parents.com/health/kids-who-feel-too-much/?page=2



"It's not an obvious diagnosis," says Dr. Miller, who adds that the behavior of a child with SPD can be confused with that of a kid who may have overlapping behaviors and a different diagnosis, such as ADHD. A child who doesn't get enough proprioception will seek ways to stimulate his muscles and joints -- continuously moving, or chewing constantly on non-food items such as straws and pen caps, she says. What's more, roughly 40 percent of the time kids have both SPD and ADHD, found a study by Dr. Miller and her colleagues.

Wednesday, April 10, 2013

Absolutely amazing progress using hydrogel to make the brain transparent!

http://www.guardian.co.uk/science/video/2013/apr/10/transparent-brains-reveal-secrets-video

A team at Stanford University has made brains transparent, allowing entire networks of neurons to be highlighted and then viewed through an optical microscope. In the past, it has only been possible to image slices of organs such as the brain. First, Karl Deisseroth and his colleagues propped up the cells in a whole mouse brain using a scaffold of fibrogel, before removing all the fat surrounding the cells. The technique – details of which are published in the latest issue of Nature – also works on human brains, potentially revealing how changes to the connectivity of neurons cause conditions such as autism

Tuesday, April 9, 2013

NEW Trial open at Kennedy Kreiger in Baltimore, Md

Kennedy Krieger Institute is looking for children, ages 5 through 13 years, with fragile X syndrome to participate in a research study.  

Double Blind trial of Roche mGluR5 Antagonist RO4917523

PROCEDURES: Participation in this study will require up to 9 visits (each lasting 2-10 hours) to the Kennedy Krieger Institute in Baltimore, MD and up to 10 between-visit phone calls with the study doctor over an 18-week period.  

Eligible participants may receive reimbursement for time and travel.  The investigational drug and all study-related evaluations are provided at no cost to the participants.

Interested? Study Coordinator: 443-923-7619 or ResearchTrials@kennedykreiger.org

Monday, April 8, 2013

Fine motor skills with plain old wooden blocks.

SO Many Options!


Make letters

Do this!

Make something functional





 
Build a tower



Railroad track or Road


Stack all the same size



Stack big to small



Over



Under



In



Out



Use Books too!










 

Expressing emotions

I owe credit to Aunt Barbara for this one!  She taught Mason to say "EEEEE" and make both fists and put his arms up in the air.  Kind of like they used to tell me to make a face when I was little and I did this frustrated and intense funny face.  Turns out to be a good thing to exaggerate an emotion!  Helps them to better connect the feeling behind it!  (Plus it's cute)