Corry and I are sitting here getting ready for our walk tomorrow and looking over our site and we are completely overwhelmed by your generosity. When I sent out the email asking for donations in all honesty I felt bad about doing so and would have been completely fine with nobody donating. Much to my suprise you all have helped us raise over $3,400 in just a couple of weeks for what we of course think is the best cause out there, and as of a few minutes ago the donations are still coming in. I just wanted to say thank you one more time before we head out to the walk to everyone for helping us absolutely crush our goal and helping to ensure that things like the drug trial that has helped Charlie so much over the past 6 months continue to come available.
Fragile X is the number 1 inherited cause of intellectual disability. However, since the exact mechanism that causes Fragile X has been identified and since it is a genetic defect in a particular gene in the X Chromosome, it is curable and will eventually be cured, so your donations will not be wasted.
We have had a lot of ups and downs over the past couple of years as we found out about and began dealing with what is going on with the boys, and I can't express with words how much it means to find out that we have this much support. Thank you all not just for your donations but also for your kind words and for your thoughts and support.
Jeremy
http://www.crowdrise.com/CharlieMason
Friday, May 31, 2013
Saturday, May 25, 2013
I'm not mad! (About STX 209 being cancelled)
How could I be mad? I got to experience my son in a different light for 6 whole months. All because Seaside Therapeutics spent their money on our child duing the trial. That's a blessing. When there is so much to focus on in terms of things to work on improving for my sons, I have to take all the blessings I can get! Someone paid to let my child take an experimental drug that helped him! Soak that up for a bit. Drugs cost lots of money to bring to market. We were lucky enough to be on the experiment side of arbaclofen. If it gets to the market stage, the drug company deserves to make a lot of money. They invested a lot of money!
Just like the school situation. Charlie had developed (all as a part of fragile x) difficult behaviors prior to our participation in the trial. In fact, he was getting suspended for aggression (towards staff, never another child). He had difficulty transitioning and there were many cases where proper training on de-escalating the behavior by redirection would have helped him. My husband found out about the trial, we got him on the arbaclofen, and followed the protocol. Given it was double blind, we weren't sure that he was getting the drug. Although he started showing affection and actually offering to tell us he loved us and hugging us! During the end of the trial when they titrate down, we realized just how much Charlie had benefited from the drug! He hit a wall in terms of ability to be taught, to control his impulses, and to inhibit his aggression. We had to take a month off of school for time to get Charlie ramped back up on the arbaclofen and overcome all of the behavioral issues. We did so and noticed good results. We also made the very difficult decision of starting him on Abilify for his hyperactivity, aggression, and impulsive behavior . He was displaying less of these behaviors but still not free from them. Abilify really helped! We wanted to get him back to school. Instead what we were offered was two days a week at 1/2 each session, OT/ST treatment and then PT treatment. Totaling an hour a week. We agreed given the BCBA was present and they could see that Charlie was in fact, doing fine and could be socialized again. After all, he hadn't shown any signs of aggression. It was then that the principal said she was afraid to let Charlie come back to kindergarten even with the BCBA present! We were not happy. We spoke with another very involved and self advocating as well as support to other parents with special needs families, mother of a child at our school. She spent two hours on the phone with us and we had never met her before this call! Then she wrote a very supportive email. Our developmental pediatrician also wrote an email saying, "Hello! You can't deprive a special needs child of his education. Especially with an IEP and BIP in place!". And it all worked. (Failing to mention ALL that we did to pull strings on pupose here.)
But guess what? We weren't mad after we noticed they did everything we asked for! We went to the IEP expecting some resistance. There was none! They agreed with us! They agreed to let Charlie attend lunch with his classmates prior to therapy (with the BCBA present.) And to 15 hours a week of ABA therapy with trained staff at Grafton at their location and therapy on the side, for the summer. And the therapists might even be able to come to the Grafton office rather than me having to take him to the school! Oh and not just the ESY summer, all summer!
So tying these two situations together, lets look at why having a good attitude can help...
1) Because our children mimic what they see.
2) We need to treat others the way we want to be treated.
3) Realize that others do want for your child what you want for your child.
4) Being grateful goes a long way!
5) Not being demanding helps you to maintain control of the situation and helps with your case of asking what you want to get.
6) You can meet great people along the way and build relationships with them based on your outlook and theirs. That can translate into having meaningful deep friendships!
7) The school staff/trial staff will look out for you more if you treat them well!
8) You stand out to others by projecting positivity.
9) You feel good about yourself and who you are.
10) SHOULD Go in #1 spot! Because God is present in our lives!
So I hope this inspires anyone who is having trouble with this transitional time. It's meant to inspire you. We don't have it easy. Some of us have FX times one, two, three, or even four. Some of our FX kids hurt us or others. Some cannot do for themselves as a typical child can. But the common thread here is that we learn from one other and inspire one another.
Just like the school situation. Charlie had developed (all as a part of fragile x) difficult behaviors prior to our participation in the trial. In fact, he was getting suspended for aggression (towards staff, never another child). He had difficulty transitioning and there were many cases where proper training on de-escalating the behavior by redirection would have helped him. My husband found out about the trial, we got him on the arbaclofen, and followed the protocol. Given it was double blind, we weren't sure that he was getting the drug. Although he started showing affection and actually offering to tell us he loved us and hugging us! During the end of the trial when they titrate down, we realized just how much Charlie had benefited from the drug! He hit a wall in terms of ability to be taught, to control his impulses, and to inhibit his aggression. We had to take a month off of school for time to get Charlie ramped back up on the arbaclofen and overcome all of the behavioral issues. We did so and noticed good results. We also made the very difficult decision of starting him on Abilify for his hyperactivity, aggression, and impulsive behavior . He was displaying less of these behaviors but still not free from them. Abilify really helped! We wanted to get him back to school. Instead what we were offered was two days a week at 1/2 each session, OT/ST treatment and then PT treatment. Totaling an hour a week. We agreed given the BCBA was present and they could see that Charlie was in fact, doing fine and could be socialized again. After all, he hadn't shown any signs of aggression. It was then that the principal said she was afraid to let Charlie come back to kindergarten even with the BCBA present! We were not happy. We spoke with another very involved and self advocating as well as support to other parents with special needs families, mother of a child at our school. She spent two hours on the phone with us and we had never met her before this call! Then she wrote a very supportive email. Our developmental pediatrician also wrote an email saying, "Hello! You can't deprive a special needs child of his education. Especially with an IEP and BIP in place!". And it all worked. (Failing to mention ALL that we did to pull strings on pupose here.)
But guess what? We weren't mad after we noticed they did everything we asked for! We went to the IEP expecting some resistance. There was none! They agreed with us! They agreed to let Charlie attend lunch with his classmates prior to therapy (with the BCBA present.) And to 15 hours a week of ABA therapy with trained staff at Grafton at their location and therapy on the side, for the summer. And the therapists might even be able to come to the Grafton office rather than me having to take him to the school! Oh and not just the ESY summer, all summer!
So tying these two situations together, lets look at why having a good attitude can help...
1) Because our children mimic what they see.
2) We need to treat others the way we want to be treated.
3) Realize that others do want for your child what you want for your child.
4) Being grateful goes a long way!
5) Not being demanding helps you to maintain control of the situation and helps with your case of asking what you want to get.
6) You can meet great people along the way and build relationships with them based on your outlook and theirs. That can translate into having meaningful deep friendships!
7) The school staff/trial staff will look out for you more if you treat them well!
8) You stand out to others by projecting positivity.
9) You feel good about yourself and who you are.
10) SHOULD Go in #1 spot! Because God is present in our lives!
So I hope this inspires anyone who is having trouble with this transitional time. It's meant to inspire you. We don't have it easy. Some of us have FX times one, two, three, or even four. Some of our FX kids hurt us or others. Some cannot do for themselves as a typical child can. But the common thread here is that we learn from one other and inspire one another.
Tuesday, May 21, 2013
Day 5 on 5 mg's
Increased aggitation. Bit me when we were trying to get him to go into the school to do his therapy. Bit me when we were leaving. Bit me when we left the Grafton office. Pulled my hair several times. Tough day! At least we made our cute frog rocks earlier! Now to get him to nap so I get a breather. Wish me luck. He is bouncing off of the walls and talking to himself. Praying.....
Monday, May 20, 2013
SSI
https://secure.ssa.gov/apps6z/i3820/main.html
Has anyone else gone through this process? I understand that we won't qualify based on income but after getting that initial rejection, supposedly I can re-apply based on the boys FX diagnoses. Kicker is be ready with ALL documentation from every doctor you have ever seen for your child.
Any advice? Please comment!
Has anyone else gone through this process? I understand that we won't qualify based on income but after getting that initial rejection, supposedly I can re-apply based on the boys FX diagnoses. Kicker is be ready with ALL documentation from every doctor you have ever seen for your child.
Any advice? Please comment!
Dr Polly Panitz
I recommend getting a good Developmental Pediatrician. If her bio helps, than great!
http://www.capitalareapediatrics.com/Public/PediatriciansPage.aspx
http://www.capitalareapediatrics.com/Public/PediatriciansPage.aspx
Pete the Cat I love My White Shoes
This book is so cute! I want more of these books!
Pete the Cat goes walking down the street wearing his brand new white shoes. Along the way, his shoes change from white to red to blue to brown to WET as we steps in piles of strawberries, blueberries and other big messes! But no matter what color his shoes are are, Pete keeps movin' and groovin' and singing his song...because it's all good.
Ages: 3 - 7
free songs: http://www.harpercollinschildrens.com/books/Pete-Cat-Love-My-White-Shoes/?isbn13=9780061906220&tctid=100
Pete the Cat goes walking down the street wearing his brand new white shoes. Along the way, his shoes change from white to red to blue to brown to WET as we steps in piles of strawberries, blueberries and other big messes! But no matter what color his shoes are are, Pete keeps movin' and groovin' and singing his song...because it's all good.
Ages: 3 - 7
free songs: http://www.harpercollinschildrens.com/books/Pete-Cat-Love-My-White-Shoes/?isbn13=9780061906220&tctid=100
Common sense media
http://www.commonsensemedia.org/
Our Mission
Common Sense Media is dedicated to improving the lives of kids and families by providing the trustworthy information, education, and independent voice they need to thrive in a world of media and technology.We exist because our nation's children spend more time with media and digital activities than they do with their families or in school, which profoundly impacts their social, emotional, and physical development . As a non-partisan, not-for-profit organization, we provide trustworthy information and tools, as well as an independent forum, so that families can have a choice and a voice about the media they consume.
Our 10 Beliefs
- We believe in media sanity, not censorship.
- We believe that media has truly become "the other parent" in our kids' lives, powerfully affecting their mental, physical, and social development.
- We believe in teaching our kids to be savvy, respectful and responsible media interpreters, creators, and communicators. We can’t cover their eyes but we can teach them to see.
- We believe parents should have a choice and a voice about the media our kids consume and create. Every family is different but all need information.
- We believe that the price for free and open media is a bit of extra homework for families. Parents need to know about the media their kids use and need to teach responsible, ethical behavior as well as manage overall media use.
- We believe that through informed decision making, we can improve the media landscape one decision at a time.
- We believe appropriate regulations about right time, right place, and right manner exist. They need to be upheld by our elected and appointed leaders.
- We believe in age-appropriate media and that the media industry needs to act responsibly as it creates and markets content for each audience.
- We believe ratings systems should be independent and transparent for all media.
- We believe in diversity of programming and media ownership
http://www.commonsensemedia.org/tv-reviews/dragons-riders-of-berk
Movies- The Croods! Can't wait for this on video. We loved it in the theater!
Shows: Super Why! This is popular at my house!
http://www.commonsensemedia.org/game-reviews/digging-for-dinosaurs
DRUMROLL! Most popular and I'm proud of it is.....Veggietales
Sunday, May 19, 2013
Please sign the petition!
https://www.change.org/petitions/sponsor-arbaclofen-stx-209-study-for-children-with-autism-and-fragile-x#
To help allocate funds for Seaside and Roche to finish the STX 209 trial!
To help allocate funds for Seaside and Roche to finish the STX 209 trial!
Saturday, May 18, 2013
Tuesday, May 14, 2013
http://www.crowdrise.com/CharlieMason
Charlie&Mason:
BENEFITING: National Fragile X Foundation
EVENT: Walk for Fragile X Families of Northern Virginia
EVENT DATE: Jun 01, 2013
DAYS TO GO: 18
THE STORY:
Fragile X Syndrome is the most commonly inherited cause of intellectual disability. The FMR1 gene on the X chromosome is responsible for the deficiency of the FMRP (Fragile Mental 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 daughters 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. The range of ability varies from mildly affected to severe. Early intervention is crucial! 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.
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. The range of ability varies from mildly affected to severe. Early intervention is crucial! 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.
Be not deceived; God is not mocked: for whatsoever a man soweth, that shall he also reap.
Adding onto our vegetable garden!
At home depot! We were going to build it from scratch but this kit made it super easy!
We planted 4 zucchini plants, a whole bed of carrots, 4 tomato plants, and some corn!
Monday, May 13, 2013
Dreams
Each day of life holds many dreams
For human hearts to share
And every dream is filled with joys
To comfort life's despairs,
But we must choose the dream we want-
To be our very own;
And we must nurture it, with love,
That blesses heart and home.
It is God's will that this should be,
To add new hopes to life
And be a haven of content-
From weariness and strife-
For He had seen how frail we are
In purpose, heart and limp,
And must have dreams to comfort us-
And light the way to Him.
-Michael Dubina
Sunday, May 12, 2013
Great outlook on life....
'We can complain because rose bushes have thorns, or rejoice because thorn bushes have roses.'- Abraham Lincoln
How fitting to all mom's with children who have special needs. Happy Mother's Day! God bless!
Saturday, May 11, 2013
How to make a visual schedule and how it helps...
Children with verbal limitations and/or developmental delay benefit by use of a visual schedule. The not knowing of what is to occur next causes anxiety about what to expect. Visual schedules and having a consistent (as possible) schedule during the day, helps alleviate the anxiety. Here's our visual schedule:
Here's our picture cards that are kept in this box. (All have Velcro on them and go in the completed activities so that Charlie and Mason can take the item off of the schedule themselves.)
And I have photographed lots of toys so that they can choose what we play with! This means mom gets down on the floor and plays too!
Tips for making and using the visual schedule:
1. Make your cards by using a combination of clip art pictures off of the computer and taking actual pictures (black and white are fine) and printing them out. Use clear packing tape to cover them or purchase a laminator (inexpensive) at Walmart!
2. Use Velcro so that the pictures can be taken down by the child/children. It allows them to work on something fine motor and to feel like they are in charge of their own schedule.
3. Also photograph various toys so that you can have time to sit down and play WITH them. Blocks, shape sorters, alphabet, flash cards, memory, games, pretend, dress-up..........
4. Make it a habit. Every morning, have the child/children come over and make the schedule with you. That means allowing them choices built into the already scheduled meals/nap/potty time/daily routine.
5. Make it short. Update it several times a day.
6. Include meals and snacks. Charlie is constantly hungry. I refer to the schedule and say, "it's not snack time yet!"
7. Include pictures of places you visit. Stores, the park, the library, and include a picture of the school bus.
8. You can add people if they are going to have a visitor or go to someone's house.
9. Ask them what else they want to include!
10. Get into the habit and then see if they go to the visual schedule and look at what is next. They do! They love it!
Wednesday, May 8, 2013
Our first FX walk/fundraiser! Please help us if you are able to do so. Even $10 will be great!!!
http://www.crowdrise.com/CharlieMason
AND PLEASE email me your name and address so I can send a thank you card!
THE STORY:
AND PLEASE email me your name and address so I can send a thank you card!
THE STORY:
Fragile X Syndrome is the most commonly inherited cause of intellectual disability. The FMR1 gene on the X chromosome is responsible for the deficiency of the FMRP (Fragile Mental 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 daughters 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. The range of ability varies from mildly affected to severe. Early intervention is crucial! 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.
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. The range of ability varies from mildly affected to severe. Early intervention is crucial! 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.
Tuesday, May 7, 2013
Novartis AFQ056
| Ages Eligible for Study: | 3 Years to 11 Years |
| Genders Eligible for Study: | Male |
| Accepts Healthy Volunteers: | No |
Criteria
Inclusion Criteria:
- Genetically confirmed diagnosis of FXS
- At Screening and first baseline, vital signs, body weight and body mass index (BMI) must be age-specific within normal ranges.
Exclusion Criteria:
- Use of any other investigational drug within 30 days or 5 half-lives (whichever is longer) of the investigational drug prior to screening until end of study visit.
- History of hypersensitivity to AFQ056 or any mGluR antagonist.
- Female patients who are confirmed or suspected to be sexually active.
- History or presence of any clinically significant disease of any major system organ class, within the past 2 years prior to screening including but not limited to psychiatric, neurological, cardiovascular, endocrine, metabolic, renal, or gastrointestinal disorders (except for typical features of FXS).
- Smokers.
- Loss of ≥10% of total blood volume within 8 weeks (or less if required for this age group and/or by local regulation) prior to dosing or longer if required for this age group and/or by local regulation.
- Significant illness that did not completely resolve at least four weeks prior to the first baseline visit.
- Any abnormal laboratory values at screening or first baseline that are in the opinion of the investigator clinically significant and may jeopardize the safety of the study subject.
- Use of (or use within at least 5 half lives before dosing) concomitant medications that are strong/moderate inhibitors or inducers of CYP1A1/2, CYP2C9/19 or CYP3A4
- History or presence of Hepatitis B/C or HIV at screening
Contacts and Locations
Please refer to this study by its ClinicalTrials.gov identifier: NCT01482143
Contacts
| Contact: Novartis Pharmaceuticals | 1-888-669-6682 | |
| Contact: Novartis Pharmaceuticals |
Monday, May 6, 2013
In love with everything on here!
https://youcreatewithchrissy.rendistyle.com/Home
Chrissy is a great mom and will take care of you by making sure that you get what you are looking for! Check it out! Great Mother's Day gift ideas! Hint hint....
STX 209
"While the study did not show improvement on the primary endpoint of social withdrawal, it did demonstrate significant improvement on the Clinical Global Impression of Severity scale. Secondary analyses of the data revealed significant improvement on the Vineland-II Socialization scale, a gold-standard psycho-educational measure of social function, in higher functioning patients.
“There currently are no FDA-approved therapeutics to treat the core impairments of ASD. These data represent an important advance towards addressing this serious unmet medical need,” said Paul Wang, M.D., Vice President for Clinical and Medical Affairs, Seaside Therapeutics. “ASD is a heterogeneous disorder, in terms of its etiology and its clinical presentation. This study helps us better understand which patients with ASD respond most readily to treatment with arbaclofen.”
Seaside intends to confirm its results by initiating another controlled trial of arbaclofen in patients with ASD"
 |
| http://www.businesswire.com/news/home/20130501006067/en/Seaside-Therapeutics-Announce-Results-Phase-2b-Clinical |
Wednesday, May 1, 2013
Cha Ching! I'll be saving some serious dough by making my own rice flour!
http://www.instructables.com/id/DIY-How-to-Make-Rice-Flour/
 |
| White basmati rice |
 |
| Rinse |
 |
| Soak 6 hours |
 |
| Dry on paper towels |
 |
| Blend till fine powder |
 |
| Heat till it doesn't stick together |
 |
| How it should look |
Subscribe to:
Posts (Atom)