Just found this beautiful presentation in the form of a “Prezi”…. it’s not too long…just a heartfelt message from one SNK parent. A valuable reminder to me, to all of us. We are the dreamers, we have hope for our kids.
Why Inclusion
November 30, 2009 by margaretmotamedLearning from friends
November 21, 2009 by margaretmotamedTonight we held another support group meeting…I love these – so nice to see other parents of SNKs, and trade ideas and stories. Just to know that when you have a problem or a question, someone else in the room has probably wandered the same path, or at least can relate!
Here are some of the learnings…
1) Many of our kids can learn to drive, one mom shared that her son is taking an online training course and once he has completed then they will study the DMV guide, and then he will just take the test. He may pass! If not, they will request accommodations.
2) Even our kids that seem to be relatively social will likely need guidance and mentoring in their teen years. Navigating social behavior is very complicated. Even how to be at a dance, or a concert, or movie. Imagine that you were a typical teen from another country with cultural differences, how would you know the social norms?
3) visual schedules can be very helpful, giving the SNK (or parent!) a sense of control and focus at the same time. Here is one example called Personal Scrum.
4) Sometimes parents need to just in there and teach the teachers, with heart and compassion and their hardwon knowledge. We often have researched and learned some areas that the teachers would like to learn and practice. One mom shared how she taught and refreshed all of the teachers on how to use an epi pen. This mom has done a great SERVICE to our SNK community!
5) SNK Dads need support too. We had about 8 dads this evening and I think that they enjoyed the talk very much!
It was a wonderful evening – my thanks to eveyone who came!
Parent Support Group (10/23/2009)
October 24, 2009 by margaretmotamedGuest Speaker: Maisie Soetantyo, BA on RDI Relationship Development Intervention
Core challenges of children with autism
- Low self awareness
- Getting and holding onto a job requires collaboration but autism makes this difficult because it’s hard to consider the other person’s perspective.
Communication
- Working hard to get anything out of them
- When they don’t respond then you get more and more anxious
- Communication has nothing to do with spoken word but they say it so many other ways
- Response doesn’t mean that you have to entertain them because when you do that you don’t force them to step up to the plate (you are not the entertainer)
- When you take this entertainment away you will see an anxious child
- What kind of a relationship do I have with my child?
- Children need time to process
- Avoid Barking orders, questions, instructions
- Instead Slow your speech and try to relate
- Change the way you communicate – what an RDI consultant will help you with
- Dinner table, changing the conversation
- Give the child more time to process, giving them the change to change what you’re thinking
- Showing them something new (like a present) in an inviting manner
- Don’t just use static communication: (just verbal) using words and just talking without connecting
- You’re trying to make a connection through the way you’re communicating
- Dinner table, changing the conversation
- Expecting more and setting boundaries – 2 big things!
- Expect them to do it (even if they are watching you for 30 seconds)
- Build that trust
- The kid usually thinks you want something and so they don’t want to put themselves out there
- Looking is an active process
- Understanding gestures
- Communication is very fluid and kids don’t always get this and they get easily frustrated
- Life beyond autism: having balance in your life and make sure you’re taking care of yourself
- Helping parents to communicate with each other
- They forget about planning/dreaming for the future
- What’s important for you as a family
- Achievable goals to get to where you want to go
- RD: parent coaches with a short intake (1.5hrs)
- Child will want to be around you more
- As the child relaxes more, then they want to play
- They start doing things they feel confident about
- Choosing to do productive things
- Videos
- It’s about expecting him stepping up to the plate and building the trust
- When he feels trusted, he stays with her (able to filter information – what’s in the foreground and background)
- Parents relax when they see that their child is competent (instead of becoming anxious and stepping to problem solve for them so that they don’t learn to think)
- Trust has to be built
- When you slow down your activity it pays off
- You see more opportunities
- Give your child more time to process and learn
- If they can build a relationship with you then they will want to build relationships with other people
Sticking with Stevia
May 31, 2009 by margaretmotamedI am sticking with stevia… and xylitol and real sugar…
Epsom Salts quality
May 28, 2009 by margaretmotamedQuality of Epson Salts is topic that resurfaces now and again. It is a current topic on another list! Below is a collection of related links. My take-away is that anything containing “natural minerals,” probably contains some heavy metals also. They go together…
Here is Susan Owen’s calculation
http://onibasu.com/archives/am/80765.html
And According to
http://www.epsomsaltcouncil.org/about_faq.htm
There is in only one USP grade “pharmaceutical”
There are 5 main suppliers of Epsom Salt in the US
http://chemicals.kellysearch.com/suppliers/usp+epsom+salt/US/186164
This old post talks about how the water content may differ
http://fins.actwin.com/aquatic-plants/month.9904/msg00324.html
Per www.pqcorp.com/literature/magsulf.pdf
PQ USP-grade magnesium sulfate (epsom salt)…meets all USP standards and Food ChemicalsCodex III specifications for magnesium sulfate.
PQ technical- and agricultural-grade magnesiumsulfate … do not meet therequirements of USP or Food Chemicals Codex III,and are not intended for human consumption insolution or as direct food additives.
and a post on another site
http://www.autismweb.com/forum/viewtopic.php?t=14433&highlight=
Interesting observation on Aaron’s
http://onibasu.com/archives/amc/36625.html
Chess?
May 27, 2009 by margaretmotamedChess is a cool strategy game, one that many of our kids can learn. If only they can have a little help, a little concrete assistance.
Like chess pieces with the directions plaster on the back, visible when playing!
http://www.amazon.com/Pavilion-Chess-Teacher-Set-Tin/dp/B001PR6F8I/ref=pd_sbs_t_3
You can find similar models by searching on amazon for Chess Tutor type games.
We have a set similar to this in a class we help teach – and it is VERY HELPFUL. Our older SNK kids really enjoy…
We have questions!!!
May 27, 2009 by margaretmotamedLast week was fun – a bunch of us SNK (Special Needs Kids) parents got together for a Parent Support Group meeting! From the time that my son was first diagnosed I enjoyed and learned so much from other parents hosting such meetings- for example the very helpful and knowledgeable Rona Gundrum and Jill Rege!!! So I am happy to take a turn being a co-host (with Nina Ponterio) of our fledgling group.
The theme of our meeting was questions… we gathered up questions when people first came in and later discussed as a group. Here are our questions… and some answers!
A: ROP, Regional Occupation Programs, are offered on most high school campuses. For example in the San Mateo see the FAQ http://rop-sanmateo.org/ “provides career technical training to meet labor market need in five program areas: Business, Health Care, Information Technology, Service and Trade & Industrial Technology.” ROP is open to all.
Some other programs to explore include the Regional Center’s work/visit program, where a social workers visits the workplace occasionally to offer suggestions, and listen to needs. Regional center may even assist with placement. You must be a Regional Center client. Another interesting program is Middle College http://www.mcnc.us/ . And most high schools also offer a Basic Life Skills program through special ed.
A helpful article is here http://www.education.com/reference/article/Ref_Living_Autism_Life/
@Margaret to ask Rona to speak at one of our upcoming meetings on more about high school related.
Q: How can I support parents, as a daycare provider?
A: One way to look at this is pre and post diagnosis. If you as a daycare provider suspect that a child may have some special needs it is important to share your observations with the parents in a very gentle and sensitive manner and give them some potential referrals. Referrals might include Early Head Start ie www.unitycouncil.org in Oakland, Children’s Health Council www.chconline.org in Palo Alto, etc. You can also find many more tips and links here http://www.helpingdelayedkids.com/teachers.htm
Q: I need ideas to help a 4th grader focus on homework.
A: Try setting a timetimer for 15 minutes of homework, then reset for 15 minutes of sensory play – jumping on mini trampoline, wall pushups, etc. The idea is to chunk the hard work up into sections and give lots of sensory breaks. Also, sitting on a ball chair or an inflated seat cushion may help. See www.theraproducts.com
Q: Do ABA services continue during the summer?
A: It depends! In past years if an IEP authorized ESY (extended school year) then the therapies generally were allowed during the ESY program time. These days with budget cuts, it is important that your IEP be clear on this point and that starts with clear IEP goals that would require ABA for implementation. These may also be based on a Functional Behavior Assessment. Before approaching the IEP, consider researching on www.wrightslaw.com . You may also want to talk with an advocate or lawyer for advice, several resource links are here . It also is possible to get ABA covered by the Regional Center if behavior at home is an issue. Here is another reference specific to our SELPA http://www.smcoe.k12.ca.us/projects/6/Policies/Policies_Behavioral_Interventions.pdf
And finally, here is a very good iep links summary page http://www.talkaboutcuringautism.org/special-ed-law/specialedsummary.htm
Q: As a parent, what can I do to help my child over the summer if he does not have therapy or other services?
A: If money is not an issue, you can contract therapies directly and try to insurance reimbursement. If money is tight – you can look into parent training and coaching for alternative therapies – that can be parent administered. For example DIR Floortime, RDI, etc.
Q: Which school district is responsible for services? The district of residence or the district of placement?
A: Tricky area. Here are some references http://www.smcoe.k12.ca.us/projects/6/Policies/Policies_Student_Movement_between_Districts.pdf
http://www.smcoe.k12.ca.us/projects/6/Policies/Policies_Private_Schools.pdf
Q: What is biomed?
A: http://www.helpingdelayedkids.com/biomed.htm
Q: Info on OSR, anyone tried? Results?
A: Interesting post and comments here “Dr. Boyd Haley’s revolutionary new fat-soluble antioxidant called “OSR” (Optimize, Strengthen, Rejuvenate). “
Q: Info on Galantamine, anyone tried? Results?
A: Read about this supplement http://en.wikipedia.org/wiki/Galantamine and here http://www.vrp.com/articles.aspx?ProdID=2045 . We also talked about Blaylock’s book “Excitotoxins, the taste that kills “
Q. Any one doing the Vit K protocol?
A. Vitamin K protocol helps our kids who have problems absorbing minerals properly. My son is on many of the listed supplements, though not on this protocol per say. To ask/read questions about this protocol you can join the yahoo group http://health.groups.yahoo.com/group/VitaminK/ .
Q: How was the social thinking conference by Michelle Garcia Winner (held last month)?
A: Great!!! Here are a few links http://www.helpingdelayedkids.com/links.htm#Socialthinking . We are already having some success using the Superflex thinking and the notion of expected, unexpected. We also talked about Carol Gray’s book on Social Stories. Brain Gym. And the use of computer visuals like youtube video, to teach about topics like science.
