Reduced admission at children's museum this Thursday morning

I hope a lot of you can make it to the play date on Thursday (see post just below this one).  I just talked to Jim at the Children's Museum, and he said that anyone who is part of our group should say as much when they come in;  the museum will take a dollar off the admission fee for each child ($4 instead of $5) and waive the fee for the adults.

Play date at the children's museum Thurs., Dec. 22

Rebecca had the idea of having a holiday play date at the Upper Peninsula Children's Museum.  We put our heads together and came up with this coming Thursday, 12/22, as a good day-- school will be out, and if we go in the morning it shouldn't be too wild.  I checked with Mr. Jim, and he said he has no other groups scheduled.  Erin and I plan to be there when they open at 10 am-- hope you can join us.

Update:  More information about the children's museum, including hours, directions and admissions can be found on their website.  Click the following link for their FREE Membership Application for Families of Need.  At this time, we don't have any special deal/break on admissions for our group.  I will call next week to see what I can arrange. 

Coming up

I just posted about the upcoming Sensory film.  That same weekend, on Sunday January 8, we'll have our next meeting.  Sorry for the delay in setting a date-- we were out of town all of last week, and well, you know, life's little details...  I hope you can make this meeting so I can bring your thoughts, ideas and concerns with me to the Autism Summit to be held January 20.

Also coming up is another Young Athletes night, this Monday 12/12 at 6:30 pm in the Sandy Knoll gymnasium.  Fun for kids ages 3-8.

Sensory friendly film at library 1/7/2012

We'll be showing another sensory friendly film at Peter White Public Library on Saturday, January 7 at 1:30 p.m. in the Community Room.  I chose Mary Poppins, hoping that an older film might have a more consistent sound levels--in the the last film the sound effects and music were much louder than the dialog, making it hard to find a good volume level for our audience.  This classic movie, staring Julie Andrews and Dick Van Dyke, won five Oscars and features lots of great songs and dance numbers.  It runs a bit long at 139 minutes so I would go ahead and encourage walking around, if needed.  I think I'll take a poll at the beginning to see if the audience would like an intermission half-way through. 

New federal legislation proposed

ABLE - The Achieving a Better Life Experience Act

Got an e-mail from Pam regarding this new bill. Sounds like a no-brainer to me -- hope it passes as easily as it should. Read more about it on this page from Autism Speaks. Probably wouldn't hurt to contact Rep Benishek and Senators Levin and Stabenow.

Thinking ahead: May Conferences

There are two intriguing autism conferences planned for the same dates in early May-- one in Green Bay and one in St Ignace. 

Autism Society of Wisconsin's 2012 Annual Conference:  "From Stepping Stones to Milestones”
Early bird registrations ends December 23
May 3rd – 5th, 2012
Hotel Sierra, Green Bay

Thursday Pre-Conference Keynote: Kari Dunn Buron
Friday Opening Keynote: “Wretches and Jabbers” Larry, Tracy, Pascal and Harvey
Saturday Closing Keynote: Nicole Beurkens

Autism Society of Michigan Focus Workshop
Deadline for registration is May 1st, 2012
Workshops include the following topics:
May 3rd, 2012: Understanding Autism Spectrum Disorder—9:00a.m. to Noon
May 3rd, 2012: Visual and Social Supports—1:00p.m. to 4:00p.m.
May 4th, 2012: Advocacy and the IEP—9:00a.m. to Noon
May 4th, 2012: Transitions—1:00p.m. to 4:00p.m.

online documentary: Making our way: Autism

Thought this little documentary about autism was pretty good-- it was produced by the state of Maine.  It lasts about an hour and might be useful if you are trying to describe autism to someone who doesn't know much about it.  (I got the link from the Autism Society of America's newsletter.)

Young Athletes tonight

Got a call from Heidi Dougan that there will be some special guests at the Young Athletes program visiting from down state who may be able to help fund this program.  We'll be there-- hope to see you too.  (That's kids up through age 8, 6:30 tonight at the Sandy Knoll Gym.)

Minutes for November meeting

Had a small but productive meeting today.  We all seemed to think our kids were extra rambunctious this fall.  Might have to do with less light, less outdoor time, maybe it's the planets-- hard to say!

I brought the other two moms who were there up to date with some of the things I've been working on.  There have been two planning meetings so far on the autism summit.  I have an awesome organizational committee made up of a member from the medical community who sees clients on an outpatient biasis, an educator, and a social services professional.   Looks like it's really going to happen, probably in late January.  The theme will be autism "over a life span," and the goals will be to create a complete list of available resources that can be distributed to families and professionals during autism awareness month and to brainstorm ways to improve resources in our area.  This support group will have another meeting in early January, before the summit, so if you have ideas you'd like me to present at the summit, you can bring them up at the next meeting.

We talked a bit about all the people that we work with as parents, and I have to say sometimes I am in awe of all the people in this community who work with individuals on the spectrum on a daily basis and either "get it" or are really trying hard (I see myself in the later category).  We'll be inviting just over 20 people to the summit, and we could easily invite five times as many if we were to include all the talented teachers, aids, SLPs, psychologists, social workers and other professionals we encounter. 

Also in the works are two upcoming sensory films at the Peter White Public Library.  The turn out for Toy Story 3 was good.  I was a little frustrated with the sound quality as it was hard to hear the dialog without getting blown away by the music levels and sound effect levels.  For the next two movies I decided to choose "classics," hoping the sound might be on a bit more even keel.  On Saturday January 7 we'll show Mary Poppins and in April, on the Tuesday of Spring break, we'll show ET. 

We discussed Autism Awareness Month, coming up in April.  I was really pleased with the response to the screening of the Temple Grandin movie with Clare Danes.  We had a good turn out and the audience seemed sincerely moved.  I'd like to show another movie this year and have been previewing possible candidates.  Right now my favorite is Snow Cake with Sigourney Weaver playing the role of a grown woman with autism.  Her character is intelligent without being savant, mostly but not completely independent.  Please let me know if you have other suggestions.  I'm a little reluctant to show movies that focus on a woman two years in a row, when statistically autism affects more males.  I also wonder if we might be better off sticking with documentaries or docu-dramas as it makes the experience seem more real to some people. 

Amy brought up the idea of having an awareness walk in April.  I've had this suggested by another member recently.  I've balked at the idea of having to organize such an event on my own, but Amy has volunteered to look into what would be required to make this happen.  Perhaps the summit would generate a good project for us to try to raise funds for.  This support group as it exists is not an official 501C3 nonprofit but perhaps we could partner with a group that is.

It would be really nice to make autism awareness really happen in this area.  I talked about how the one bit of press we got last April when I was interviewed on Doug Garrison was a little bit of a let down for me.  He wanted to steer the topic towards early intervention, which for most parents is a bit of stressor, I think.  I see autism awareness as an awareness in the community of what autism is, how prevalent it is, and how it affects individuals and families.  It would be nice to get some real momentum behind this.  I think there is still a stigma to autism, maybe leftover from the refrigerator mother days, or maybe having to do with behavioral issues.

Heidi had a great idea about seeing if we can set up a display in the case on the main floor of the Peter White Library that month.  I should be able to find out if it's available tomorrow.  I have to say that my mind was blank when she mentioned the idea, but now I've got a whole bunch of ideas of things we can display from pec's to fidgets, to a weighted vest.  And there is certainly a lot we can say.

Also discussed:  Superheros on the spectrum-- the climbing, seeking out heights, the loner qualities, and do they wear tights for the proprioceptive input?  Think about it.

11/14/11 Update:  the library display case has been reserved for April-May for Autism Awareness-- contact me if you have an item or idea for the display.

This coming week

Lots of stuff going on in Marquette:

Sunday 1:00 is our support group meeting at Peter White Public Library

Monday at 6:30 is Young Athletes

Thursday at 7:00 is the SEPAC meeting

60 Minutes: Aps for Autism

Thanks to a phone call from a group member, I learned that 60 minutes did a special show on Steve Jobs and included a segment on how the I-Pad has helped people with autism.  You can watch the footage and read the transcript on the 60 Minutes website.  There are some bonus clips online, as well, that weren't part of the regular broadcast. 

Lakestate Industries open house

For those of you who are interested in knowing more about what Lakestate could bring to Marquette if their proposed plan to open a shop here goes through, there is an open house at their Escanaba facility this Friday. October 21st, from noon- 5pm. 

Lakestate Industries is located at 1830, N. 21st St., Escanaba 49829.  Call 906/786-9212 if you have questions. 

Young Athletes

The Young Athletes program is starting again tomorrow (sorry for the late notice).  This program for special needs kids ages 3-8 and their families is a fun way to stay active in the winter months.  The program is held monthly this year in the Sandy Knoll School gym in Marquette.  Activites include circle music and movement time, ball, bean bag and balance beam and other fun motor planning and coordination games. 

Fall newsletter from SPAR

The following link will take you to the fall 2011 issue of SPAR Update.  Lots of fun stuff happening for teens and adults. 

Fall newsletter from SPEAKS Education

Click the following link to the SPEAKS Education fall newsletter to get some timely information on back to school and Halloween planning for special needs kids. 

Broadway goes sensory friendly

Check out this story on the New York Times blog about a sensory friendly production of the Lion King.  So if the upcoming sensory friendly showing of the Toy Story 3 at Peter White Public Library is a successful event for your child, you might think about taking them to Broadway next.

September 18th meeting minutes

There were four of us in attendance last Sunday-- me, Rebecca, Jen W., and a new mom to the group of a 17-year-old at Marquette High.

I actually put together an agenda this time.  The meeting started with announcements about a lot of the things I've posted here in the last couple of weeks:

• There will be the sensory friendly movie on October 14.  Rebecca suggested we leave to closed-caption on as a lot of kids who are more visual learners follow the words better than the spoken dialog.  
• I mentioned the SPEAKS workshops coming up.  There seemed to be particular interested in the IEP workshop at MARESA on October 16.
• We discussed the YMCA classes.  Some were turned off by the cost.  The swim class, as initially scheduled was seen as too short, but it has been rescheduled to last an hour.  I think as this is an pilot program, we can hope it will just improve as more people voice their preferences.  
• I gave another plug for the Lakestate program.  Jen, who is a major force behind getting them up here, was there to elaborate.
• Jen also mentioned Kim Kee and her cranial sacral work.  She'll be talking at an upcoming Down syndrome meeting-- I'll let people know about that when I have a date for it.  I mentioned to Qigong massage I've been trying with my daughter.  I'll write a more extensive post on that when I better know what I think about it. 
• I also mentioned the Down Syndrome Buddy Walk.

Most people had to leave after an hours so we didn't have a whole lot of time to get into new business, but I have a few ideas churning in my head that I'd like to see if I can make happen.  Lately I've been playing around with the idea of hosting or maybe co-hosting an autism summit.  As I was going through the diagnostic process and trying to identify all the resources in the community it seemed that many of the experts I talked with had only a partial understanding of who and where I could receive help.   What if we got all the people in this community who really "do autism" for a living in one room together?  We could put together an agenda and maybe pin point some key areas where the community as a whole could use more help and do a little problem solving.  So the idea is half formed right now, but if you have thoughts to add or names for the invitation list (self nomination is fine), do let me know.  Maybe the beginning of autism awareness (April) month could be a goal for implementation.

SEPAC Minutes

I attended the SEPAC (Special Education Parent Advisory Comittee) meeting last week at the MARESA building. 

The highlight of the meeting was a highly engaging presentation by Cheryl Ohman of Lakeside Industries of Escanaba.  Their company employs well over a hundred people who would otherwise have barriers to employment. 

Cheryl has been wanting to expand their business into Marquette for some time and it looks like the wheels are in motion to make it happen at this time.  There is someone interested in providing space, now they need to raise the rest of capital to provide the equipment needed.  In the past they have had good luck with getting some useful donations.  They need things to equip a wood shop, a van or two for transporting items, a forklift.  Money. 

There will be a meeting at 1:00 pm tomorrow at Peter White Public Library for those interested in helping to make this happen.  If you can't make the meeting, but are still interested in getting involved, call or e-mail Cheryl at 906/786-9212 or cherylo@laketateindustires.org .

Other items discussed at the meeting included the upcoming newsletter that is about to go to press and upcoming speakers for future meetings.  Next month's meeting will be Ocotober 20; the speaker will be Stacy Maijala of SAIL who will speak on the Gliding Stars program which helps special needs kids learn to ice skate. 

Luanne Peterson, Special Education Coordintor for MARESA announced the three new Special Education Coordinators:  for MAPS it's Sandra Barnes, Kellie Boase in Negaunee, and Tania Perry in NICE. 

Cool article about tech company who's entire staff is on Autistic Spectrum

My husband found this today on Talking Points Memo: 

Software Testing Startup's Autistic Workforce Seeks to Change Business Culture

First ever sensory friendly film for Marquette

At 1:30 pm on Friday, October 14 (teacher in-service day), the Peter White Public Library will show Toy Story 3 in the Community Room.  The sound will be at a moderate level, some lights will be left on, a cerrtain amount of restlessness and vocalizing will be tolerated, and the closed caption will be turned on.  Thanks go to Pam for suggesting we bring sensory friendly films to Marquette.  (And thanks to the friends of the Peter White Public Library for paying for the public performance license.)  Yes, there's no charge for this event.

Three workshops coming to Marquette from SPEAKS Education and Michigan Family-to-Family

SPEAKS Education and Michigan Family to Family Health Information and Education Center are paired in bringing three workshops to the Marquette area that focus on special needs topics.

Individual Education Program (IEP): The basics
Thursday, October 6, 10 am to 2 pm (lunch included) at Marquette – Alger RESA, Conference Room C, 321 East Ohio Street.  Free.

How to navigate the system:  Rights and responsibilities
This workshop is for anyone who wants a better understanding of rights, responsibilities, timelines, and complaint procedures and what someone could expect during the processes under:
• Children’s Special Health Care Services
• Community Mental Health Services/Hospital Mental Health
• Medicaid
• Special Education Services
Basic information will be provided on the purpose of each system, who is eligible, how to gain access, and what to expect in the process.
November 2, 2011, 9:00 am – 3:00 pm, at MARESA.  The cost is $10 and includes lunch.

Transition planning:  Helping young adults reach their hopes and dreams
Families, service coordinators, case managers, and others who work with young adults will learn from
representatives of state and community organizations how to help them plan for their future education, health care, and mental health needs. Tools and resources from the “Helping Young Adults with Disabilities Reach Their Hopes and Dreams Toolkit” will be shared.
November 3, 2011, 9:30 am – 3:30 pm, Peter White Public Library, Shiras Room.  The cost is $10 and includes lunch.

 To register for any or all of these workshops, visit www.bridges4kids.org/f2f or call (800) 552-4821.

Down Syndrome Buddy Walk

The Upper Peninsula Down Syndrome Association is holding a Buddy Walk to raise funds for their group and to honor Maximilan Kolbe newcomb.  The walk will take place at noon, October 1, at the Al Quaal Recreation Area.  More information can be found at http://www.buddywalk.org/index.php?option=com_content&view=article&id=131&walk_id=7255&Itemid=66 .  Or email UPDownsyndrome@gmail.com for a copy of the registration form. 

Lakestate Industries rep speaking at SEPAC Meeting Thursday

Sorry for the late notice, but there will be a SEPAC (Special Education Parent's Advisory Committee) meeting this Thursday at the MARESA Building on Ohio St. in Marquette from 7-9 pm.   

Parents of older children on the Spectrum may be especially interested in the guest speaker.  

Cheryl Ohman from Lakestate Industries in Escanaba will give a presentation on the possibility of getting our own Lakestate Industries in Marquette. Lakestate Industries employees people with barriers to employment. She will be speaking for about 60 minutes at the beginning of the meeting.

Kids got to jump!

There will be over 30 bouncy houses at Mattson Park at the lower harbor in Marquette next Saturday, September 17, 12-7:00 pm.  I plan to bring my little sensory seeker and hope to run into some of you there. 

The event is called Party in the Park and will include live kid friendly entertainment, art, music, food, and a nature corner.  Wrist bands are on sale now at the culdren's museum and cost $10 for kids and $5 for adults.  Proceeds of the event go in support of the U.P. Children’s Museum and Marqette General Hospital Women and Children Center.

Pediatric OT and speech/language may move to Peninsula Medical Center

The board of the Peninsula Medical Center on Fair Avenue will be voting on September 21 as to whether or not they will allow Bell to move their pediatric OT and Speech clinic to their facility.  As the bulk of clinic's clientele is currently driving from Marquette all the way out to the Teal Lake facility once or twice a week (we've been doing this for about two years now), I think this could be good news for a lot of us. 

If you have an opinion on this matter, I invite you to contact the board before they meet on the 21st. 

Written letters can be addressed to:

Peninsula Medical Center

Attn: Board of Directors

1414 West Fair Avenue

Marquette, MI  49855

Or, letters can also be email to: Mr. Miller  hmiller@penmed.com

Swim and Gymnastics classes at the Y for special needs kids

I ran into Jennifer W. this morning and she and the Down Syndrome Support Group have done a lot to get things happening for the special needs community of Marquette.  First let me tell you about two new classes being offered at the Marquette YMCA:

Special Needs Gymnastics
Special needs Gymnastics is for children ages 3-6 that require special attention.  With the help of Bell Hospital's Occupational Therapists, our staff has put together a great program to get you little one moving while developing motor skills, increasing muscle tone and coordination.
Wednesdays 5:30-6:15 pm (Fall 1 and 2)
Cost: $30 for members and $45 for nonmembers

Special Needs Swim Lessons
Special needs swimming is for children ages 3 and up that require special attention.  With the help of Bell Hospital's Occupational Therapists, our staff have put together a great program.  Program uses water education to develop water safety and swimming skills while focusing on developing self confidence and self esteem in the water.  Each child will progress through the different levels at their own speed.  An individual skills check off list is used to show parents their progress.
Saturdays 9:30-10:00 am (Fall 1 and 2)
Cost:  $39 for members and $59 for nonmembers

If you are interested in these programs or have questions, please contact Laura Murawksi at 227-9622.

Tips for employers of individuals with Asperger Syndrome

My husband, the government documents librarian, sent me the following document from the Job Accommodation Network:  Accommodation and Compliance Series:  Employees with Asperger Syndrome.


According to their website, "JAN’s Accommodation and Compliance Series is designed to help employers determine effective accommodations and comply with Title I of the Americans with Disabilities Act (ADA). Each publication in the series addresses a specific medical condition and provides information about the condition, ADA information, accommodation ideas, and resources for additional information."

Understanding the new health care act

The Family to Family Health Information & Education Center is hosting a Patient Protection and Affordable Care Act: Practical Basics for Families forum will be held at the SAIL office on August 24. If you are interested in learning more or to register, please visit their website: http://www.gifttool.com/registrar/ShowEvents?ID=1862  or contact: Valerie Smith, smithv9@michigan.gov, 1-800-359-3722.

August 24, 2011

7:00 – 9:00pm

FREE

SAIL Office, 1200 Wright St. Ste. 3, Marquette, MI 49855

Sally Burton Hoyle workshop in the Soo August 19.

The focus of Dr. Burton-Hoyle's talk will include the following: 
-Medical Diagnosis vs. Educational Criteria
-Students with ASD and Supports in the General Education Setting

Dr. Burton-Hoyle is a Professor of Special Education at Eastern Michigan University, the coordinator of the Masters of Autism Spectrum Disorders Program and a member of the Autism Collaborative. She is well grounded in the diagnostic and therapeutic trends of the day and has a balanced view of the history of Autism and how therapeutic trends have evolved.  She was the executive director of the Autism Society of Michigan from 1994-2006.

SPEAKS Education is sponsoring this workshop at the Eastern Upper Peninsula ISD on August 19 from 10 am - 3pm.  Seats are limited, please call or email to register for this presentation.
Melissa White
906-293-8984
mwhite@speakseducation.org

Why is autism on the rise?

 The following story is off the TV6 news website.  I got a call this morning from a reporter that wanted to do a story on Autism, and a few group members tipped her off about our support group.  I guess they have a little contest on their facebook page where the audience gets to choose a topic they'd like covered in a feature story.  I saw Rebecca today at the Bell Teal Lake offices and she let me know that autism won out over poison ivy and ... what was it?  sunsceen?  something we all care less about than ASD, I am sure. 

Why is autism on the rise?: "The autism population is growing each year, so much so that autism support groups are now available in the U.P."

Family Picnic

Anyone who is interested is invited to a family picnic on Sunday,  June 26, at Harlow Park in Marquette (on Washington St, just west of 7th St) at 12:30 pm.  I'll be bringing hot dogs (gluten free), buns, paper plates and napkins and ketchup.  If it rains, Barbara Rhyneer (Eamonn's mom) and her family have invited us to use her house (349 W. Bluff St.) as a back-up location.


I'll bring a sign-up to the next meeting if you'd like to contribute.  If you don't think you'll make the meeting, but plan on coming to the picnic, you can contact me via the comment link below.

Update:  Fruit salad added to menu

June meeting: Special Education Parents Advisory Committee

I attended last night's meeting.  The members were abuzz with the success of the current Lose the training Wheels Bike Camp.  As of last night, 15 of the 18 participants are riding and the program director is expecting two more to succeed today.  The participants will each earn a trophy this afternoon.  One of the mom's with a child in the program was at the meeting and she shared her son's excitement with us.

The elections for officers resulted with three officers agreeing to serve another year:  President, Karin Hansard; Treasurer, Vicki Smith; and Secretary, Allison Wuori.  The new Vice Chair will be Heidi Gould.

I volunteered to help with the fall newsletter.

Reports were given by MARESA special education coordinator, Luanne Peterson and MARESA board member Judy Parlato.

Luanne was back from the Asperger training in Escanaba which she said was well-attended and well-received.  Some things in the works at MARESA include the following:

• Crisis intervention training for bus drivers before classes start.  
• Training for para-pros will take place before classes resume in the fall.  
• The Speech Language Pathologists will be meeting this summer to review their guidelines.  
• MARESA is expanding their website.  
• Summer institute will include a program on PEC's (Picture Exchange Communication).  
• New Special Education Coordinators are being hired for Nice, Neguanee and MAPS. 

Next SEPAC meeting will be August 18, 7:00 at MARESA.

Seeing the World from a Different Angle--Autism Training in Sault Ste Marie

There will be a one-day autism training opportunity coming up soon in Saute Ste Marie on June 24 from 10-3:00.  It conflicts with the support group meeting, but as you know I will post the minutes if you'd really like to attend this. 
The flier I have says, "This training will provide participants with strategies that build upon the characteristc and strengths of students with Autism Spectrum Disorder and lead to improved independant and socialization skills.  This session will aslo address supports that increase successful learning opportunities in integrated environments." The program is sponsored by SPEAKS Education and the Eastern UP ISD.  The featured speaker is Kelly Dunlap who will be there from the START program at Grand Valley State. 
Lunch will be provided.  To register, call 906/293-8984 or email mwhite@speakseducation.org.

Drama and Dreams Playscape Summer Camp

Just heard about this opportunity for children ages 8-12 from an e-mail blast from Superior Aliance for Independant Living.  I called Nicky Nason from the Arts and Culture Center, and she confirmed that they have had chldren on the spectrum participate in the past who have had fun and been very successful in this program. 

This camp is being held 9am-1pm on August 22-25 (Monday-Thursday). Most camp activities will take place at the Peter White Public Library Community Room, and will culminate in a live performance for family and friends on the evening of Thursday, August 25. There will be an optional final session/award celebration for students the morning of Friday, August 26.

They are currently accepting student enrollments for Lake Superior Theatre's Drama & Dreams Playscape Summer Camp; a one-week theatre camp. Children with special needs are particularly encouraged to enroll. Space is limited! Due to the success of the camp for the past two years, people are already asking about it. Please sign up now to reserve your child's spot!
The camp is designed to help children, ages 8-14, work on socialization and communication skills as they learn about theatre, costume and set design, stage make-up, facial expression, voice projection, team building and leadership. Students will sing, tell stories, read poetry and develop a live performance in a fun, safe, creative environment.
Cost: $40/person. Each child will receive a t-shirt for the final performance that s/he can keep. Makeup, props, costuming and professional coaching will be provided. Need based scholarships are available.
Support provided by the Michigan Council for Arts and Cultural Affairs, the National Endowment for the Arts, and the CUPPAD Regional Commission.
Note to parents: We cannot accommodate children who are not toilet-trained or who require the administration of medication during camp hours. However, parents are welcome to send an individual aid to camp with children requiring these additional services.
Do you think this is a great idea? Would you like to be involved? Here are a few ways you can help:
• Become our partner. Get your special needs community directly involved as part of the program. Talk to your group and explore ways to get them involved.
• Be a volunteer on stage and off. It truly does take a village to raise a show. And what a village we have!
• Tell everyone about this great opportunity! If you have a group that would like to learn more about this playscape and its opportunities just let us know!
Support provided by the Michigan Council for Arts and Cultural Affairs, the National Endowment for the Arts, and the CUPPAD Regional Commission.

Training for Parents: Project ImPACT in Sault Ste Marie

I found a copy of the registration form online for the August 25-26 workshop at the Walker Cisler Center at Lake Superior State University in Sault Ste Maire.  The bad news is that it's not free.  The good news is that the workshop is designed specifially to train parents.  And if you are only attending so you can work with your own child, you only need to attend (and pay for) one day.  The second day of the workshop is for those who intend to go on and train other parents. 

I contacted the program developer to get a firmer grasp of who would benefit from this program.  The following is from her reply:  "The program is geared mostly for children whose language ranges from the preverbal stage (up to about 12 months language age) to the sentences stage (up to about  3 1/2 years language age).  It can be adapted for children with complex language who have difficulty with things like conversation, topic maintenance, speaking about past events, etc. with consultation with a good speech pathologist.  However, the information that will be presented at the training will focus more on the preverbal to sentences stages.  The program also focuses on improving play skills, including symbolic play, which many children with ASD who have good language skills continue to struggle with. Most of the children who have gone through the program have been 18 months to 6 years, although it has been used with older children who have significant language delays."

More information about Project ImPACT is available on their website:  http://psychology.msu.edu/AutismLab/Project%20Impact.html.

Upcoming SPAR Activities

Here are a few upcoming activities sponsored by Superior Alliance for Independent Living.  (The last one sounded like it might be of particular interest to those of you with older children.)

1.     Kayaking

July 5^th, August 15^th

Teal Lake Lodge @ Al Quaal Recreation Area, Ishpeming

Demo Session 12-2pm; Paddling session 2-4pm

Basic instruction provided by YMCA of MQT County and certified paddling instructors.

FREE

Adaptive equipment will be provided. Everyone is welcome, regardless of ability level…if you like the water and want to try kayaking, this is for you!

PRE-REGISTRATION REQUIRED

2.     Indoor Boccia Ball

June 23, 30; July 7, 14, 21

YMCA Gymnasium, 1420 Pine St., Marquette

1:00-2:30pm

FREE for Y members; $2 for non-members

Everyone is welcome! An inclusive event.

3.     “How To” Ace Job Interviews

June 29^th

SAIL Conference Room, 1200 Wright St., Marquette

1:30pm

FREE

Informal environment! Bring your questions! Snacks provided.

 

Try, try, again: New autism Bill introduced to Michigan Senate

If you follow the Autism Speaks legislation alerts, you may already be aware that two new bills have been introduced to the Michigan senate trying to once again require insurance to cover autism therapies.  If you follow the news, you've probably heard nothing about this.  After I was alerted by another local mom by e-mail, I did a quick search on Google News to learn more about this new bill:  nada!

I guess that means if this bill is going to have half a chance of getting off the ground, noise will need to be made.  The Bills are linked here:  Senate 415 and Senate 414 (they are nearly the same).  Tom Casperson is our local rep; here's his contact information.  If you're not from the Marquette area or interested in contacting more senators try this link.

May Special Education Parents Advisory Committee meeting

I attended the May SEPAC meeting, after missing most of the meetings held this winter.  It was held at Superior Central School, where meeting attendees were given a brief tour of their facilities, highlighting their special education resources. 

Their was further discussion of the Lose the Training Wheels Bike Camp to be held next week at the Superior Dome (see post below for sign-up information).  As of the meeting on May 19, there were six riders signed up.  Volunteers who can commit to working the whole week will be needed to spot and run with the riders. 

Luanne Peterson reported that preK screening was in full swing at that time.  Playgroup at MARESA was winding down and they were seeing cuts in Early-on funding.  She did think they would be able to maintain services for the next year, but she's concerned about larger class sizes.  Community support has been high.  

The next meeting will be held next Thursday,  June 16 at 7:00 in the MARESA building on Ohio St. in Marquette.  SEPAC officer elections will be held.

Sibshops at Marquette General Hospital

Marquette General is once again offering sibling workshops for the brothers and sisters of children with special needs.  Here's a message I recently received from the folks at Superior Alliance for Independent Living:

SIBSHOPS

A great opportunity for siblings of children with disabilities (ages 5-12)

Siblings have the opportunity to enjoy games, activities and fun… just for them.

Monday, June 20, 2011

Monday, September 12, 2011

Monday, January 23, 2012

Monday, March 19, 2012

June – Family Celebration - TBA

5:30-7:15pm

Family Birthing Center Classroom, 2^nd Floor, RCN building, North Wing

Registration Fee: $5

Snack provided.

Marquette General Women’s & Children’s Center

For more information or to register, call 225-3081

Minutes for May 15th meeting

There were six people at today's meeting, three returning parents, including myself, and three new people:  two friends came together, both with grandson's on the spectrum, and one friend of mine with a six year old son on the spectrum. 

I can't say as the meeting ever actually got down to business.  Other than the business that is the main point of being a support group, which is people shared their experiences, concerns and successes. We talked about sensory issues with clothes, weighted vests, educating our kids' classmates, the Brain Balance program and handling meltdowns, among other topics.

There are a few things out on the table that I figure I'll bring up here.  One is the idea of sensory friendly films.  This idea was raised at the last meeting.  As anyone who subscribes to the Autism the Society of America newsletter knows, major theaters in large cities are starting to offer special screenings of children's movies that are sensory friendly-- some houselights on so it's not as dark, volume turned down so as not to overwhelm.  I've asked around at Peter White to see if others would support such an offering there and the answer is yes!  Only, not till the Summer Reading Programing is over, which means late August or September.  If you have any thoughts or ideas for this program, please send them my way. 

Another idea out there is to have a summer time family gathering sponsored by the group:  a picnic!  If this sounds like fun to you, please let me know what day/time of day, choice of park and other ideas you have.

I've also tried to poll people for meeting times for the summer months as the library will be closed on Sundays between Memorial Day and Labor Day.  As it seems that people still want to meet and more seem to prefer weekends to weekdays, that leaves Saturday.  Let's try Saturday June 25, 10:15 am.

Respectfully submitted by Ellen.  Additions and corrections are always welcome.

Bully-proof the U.P.: Prevent and Protect

The Upper Peninsula Children's Coalition will hold its annual conference  this coming Friday, May 13 at the Upfront & Co in downtown Marquette.  The theme this year, bullying, is of course a concern for most parents with children on the spectrum. The program runs from 9 am to 3:30 pm with speakers from all over the U.P.  The cost is only $35 for the day and includes lunch.  Scholarships are also available.   

U.P. Sports Training Camp

The U.P. Sports Training Camp provides a five-day residential camp experience for children with special needs in Marquette and Alger Counties. Preference is given to prior Sports Training Camp participants and to youth who meet special education eligibility, are between 10-26 years of age at the beginning of camp, and who have been ineligible or unable to attend another summer camp.

Who is involved with the camp?
Many individuals and groups including Special Olympics Michigan Area 36, Bay Cliff Health Camp, Pathways, NMU, and Marquette-Alger RESA are involved with camp.
Where is the Sports Training Camp held?
Bay Cliff Health Camp, Big Bay, MI

When is camp?
Athletes - August 9-13, 2011
Staff - August 8-13, 2011
Ages?
Athletes - 10 - 26 at the beginning of camp
Staff - 18 & older

Lose the training wheels

The Special Education Parents Advisory Committee (SEPAC) will once again sponsor a Lose the Training Wheels Bike Camp.  This event will be held on June 13-17 in the Superior Dome.  Children age 8 and up can participate.  The cost is $100 per child and scholarships are available.  More information is available at http://www.losethetrainingwheelsmqt.org/.

Autism Awareness on the Doug Garrison Show

Just returned from taping a brief interview on the Doug Garrison Show, a locally produced talk show.  Someone from the group tipped Doug that we were trying to promote autsim awareness this month and he invited me onto his show.  He said the show will be broadcast on cable station 12 on Thursday and on FoxUP on Friday.  It will also be posted on http://www.thedouggarrisonshow.com/.

Autism Speaks Community/School Toolkit

I got a link to this toolkit from Pam.  The toolkit is meant to be a support for the people who interact with children with autism on a regular basis.  You can download the whole 127 pages, or a single relevant section.

Minutes for April 10th meeting

There were eight attendees to the April meeting at the new Sunday afternoon time.  (I was the only one who came late.)  New faces include a NMU student who's adult brother was recently diagnosed with Asperger Syndrome, a mother with a first grade daughter who also works for Pathways, and another mom with a young daughter with Aspergers.

We had no special guest speaker this time, but found plenty to talk about.

When I arrived, their was discussion in progress about Social Circles, a nice visual way to explain social boundaries and personal space to children on the spectrum. 

Another topic of conversation was autism awareness in the classroom and other social groups, like a church group.  The book Captain Tommy was recommended (and I just put in a title request to the Children's book selector at the library).  Tarra said that they had autism awareness kits available that could be checked out when she worked down state.  Since the meeting, she checked with Barb Nelson, and she does have a kit available here.  We are looking into creating a second kit that could be checked out of the library.

Since it's that time of year, there were a lot of us thinking about IEP's and comparing some of the different services/supports our children need in the classroom.  If you think your child would benefit from assistive technology, you can request to have an assistive technology evaluation.  If you think your child needs extra support to stay on task, you may want to request an aid. 

We talked about the upcoming workshops in Escanaba (hosted by UPAN in June) and Saulte Ste Marie (hosted by Project ImPACT, August 25-26).

We talked about the (then upcoming and now over with) screening of Temple Grandin.  One member wanted to make sure we made the point that Temple Grandin's story is just one story.  In the future we might want to host other autism movies.  When Tarra gave her introduction she did make that point to the audience.  I was very pleased with the turnout-- close to 40 people came.  When they movie was over and he credits started to run, the audience didn't budge for a few moments; they really seemed to be moved by what they had just observed.

We discussed the idea of contacting a local theater about hosting sensory friendly films, like some theaters do in larger cities.  I also said we might be able to do this easily at the library as well. 

Respectfully submitted by Ellen.  Additions and corrections are always welcome.

Boy Scouts and Young Athletes

An extra day of Young Athletes has been added to the schedule.  The Boy Scouts of Marquette would like to come play with the Athletes on April 18.  So two more Young Athletes sessions this spring:  April 18 and May 2, 6:30-7:30 pm, Sandy Knoll School gymnasium.

Temple Grandin to Speak in Milwaukee in May

Just learned this conference tonight from Tarra.  (We had a good turnout at the Temple Grandin movie tonight at the library-- at the end the audience members were glued to their seats.)

New at the library - MiningJournal.net | Autism Awareness titles

The link below goes to a column I wrote last week featuring books and videos available at the library for those wanting to know more about or work with people on the spectrum. 

New at the library - MiningJournal.net News, Sports, Jobs, Marquette Information The Mining Journal

Changes in medicare affect availability of durable medical equipment in the U.P.

I just took my daughter in yesterday to see our local pediatric physical therapist.  The good news is that my daughter doesn't need orthotics at this time, the bad news is that a lot of kids who do need special supports-- from crutches to walkers to wheelchair equipment --can't get them because the changes in how medicare pays suppliers of these items has priced the suppliers out of the entire Upper Peninsula. 

I'm giving you close to no notice, but our state senator, Tom Casperson, is having a townhall meeting tonight from 6-8 in Escanaba at the Delta County Courthouse, if you know someone in that area who can go and serve as a voice for special needs in the U.P., now would be a good time to send them an e-mail. 

If you can't go, and you want to speak out on this issue, here is a good link for contact information for all of our representatives.

News from SAIL (Superior Alliance for Independant Living)

I've got three seperate e-mails from SAIL I've been meaning to blog about.

1.  Upcoming all-day workshop sponsored by the Michigan Family-to-Family Health Information & Education Center, entitled “Is Your Teen Ready For Adult Life Training” 

Friday, April 29, 2011

9:00-3:00pm

Eastern UP ISD

315 Armory Place
Sault Ste. Marie, MI 49783

This workshop is for families of teens with special health care needs, receiving mental health services or who have a disability and professionals who serve them.  Information and practical suggestions will be shared for helping teens prepare for the transition from high school to employment or higher education; from home to independent living; and from child to adult community services including:
· Health Care Coverage and Health Care Skills
· School based transition planning
· Mental Health Programs
· Post Secondary Education
· Employment
· Housing
· Human Services
Skill building activities for engaging teens to express their hopes and dreams to begin the person centered planning process, tools for assessing health care needs and skills,
information on self determination and guidance for accessing transition resources to help prepare teens for successful transition will be shared.
 
Cost to attend is $10. Lunch will be provided.  A limited number of scholarships are available for families. Please inquire.

This program has been approved for 5 CE Hours by the Michigan Collaborative for Social Workers (Course Approval #012109-28) and .5 SBCEU's by the State Board Office of Certification Services. The cost for CE/SBCEU's is $15. Attendance for the entire day constitutes course completion and CE/SBCEU certificate award. 

2.  SPAR has a spring newsletter full of fun activities.  Check it out online. 

3.  SAIL is helping to distribute a survey as described below:

Take Survey of IDEA Advocacy Experiences, sponsored by National Organizations

Please take part in the IDEA National Survey, a survey of whether the rights of students with disabilities and their parents are protected. The survey is sponsored by the National Center for Learning Disabilities (NCLD), National Down Syndrome Society (NDSS), Autism Society of America (ASA), Autism National Committee (AutCom), and The Advocacy Institute (AI). Go to http://www.ideasurvey.org

The survey topics include whether the rights of students with disabilities and their parents protected throughout the special education process, including IEP meetings and IEP issues, eligibility (child find), Due Process hearings (impartial hearings), and other education issues. There is also a questionnaire for parents whose children have been denied eligibility for IDEA (denied an IEP).

All disabilities are welcome! We are studying these issues for all students, regardless of their disability or special need. There are surveys for all community members:
-- Parents of children with disabilities
-- Self-advocates (people with disabilities)
-- Attorneys, advocates, and other professionals

The survey will run March-May 2011. The results will be compiled into a report about experiences under the IDEA that will be published this summer.
You can take the survey and read more about it at http://www.ideasurvey.org <http://www.ideasurvey.org/>

RDI: Relationship Development Intervention

Since last fall, my husband and I have been working with Sonya Lovegrove, an RDI Consultant in Training.  She's located in Sault Ste Marie, Canada and drives to Marquette every week or every few weeks to work on lessons with us.  I learned through the UP Autism Yahoo group that she was seeking families to work with shortly after I had heard, from about three different sources, what a good program RDI was.  I had already bought a now out of date book about the program, bought it because I liked it so much when I reviewed a inter-library loan copy.

This was the same time we were receiving the diagnosis, being referred to try ABA therapy, and learning we do not qualify for and cannot afford Pathways' services.  Since Sonya was working on her certification, she needed to have two families who would commit to work with her through the entire RDI program (about a year long), and she was willing to do her part for free.  We agreed to pay the $600 for a year's worth of time on the RDI online educational program, buy a digital camera so we could record our assignments, learn how edit and download video clips, and do all our homework. 

I know there is a lot of debate out there as to whether ABA (Applied Behavioral Analysis), the old tried and true method of working with ASD kids, or RDI or Floortime or whatever other route you take is the best route.  I am not an expert, and as far as I can tell the experts don't agree.  So all I can say is this is what we are doing now, and I like it enough to keep with it. 

One of the things I like about RDI is it so centered on training the parents.  The big R in RDI is all about the relationship between child and parent.  They talk about how typically children learn from their parents and how that relationship is broken down between child and parent when ASD is present.  The consultant does evaluate the child, but the evaluation has to do with how the child works with the parents.  The consultant spends most of her time working with the parents to help them better work their children.

Lately we've been doing exercises in co-regulation and working on our communication style.   Last fall we learned that studies have been done comparing regular conversational patterns with typical adults and typical adults and children with how we speak with our ASD children.  In regular conversation we do a whole lot more descriptive or declarative talk, and when we talk to our ASD children we use almost all imperative language:  do this, do that, etc.   Sonya gave me this link to a podcast that I think does a great job of explaining the difference between declarative and imperative communication and how to modify your communication style.

If you're curious about RDI, here is a link to the main RDI website.  And here is a link to Sonya's website.  As I said, she is located in the SOO, but she is willing to come and talk to our group if people are interested in learning more about RDI.

Robert MacNeil Returns to NewsHour for 'Autism Today' Series | The Rundown News Blog | PBS NewsHour | PBS

Robert MacNeil Returns to NewsHour for 'Autism Today' Series | The Rundown News Blog | PBS NewsHour | PBS
Just learned about this upcoming PBS series on another board I follow online.  Sounds pretty good. 

Autism Awareness Month

National autism awareness month starts in just a few hours.  I know there is a push to get people to wear blue on Saturday April 2 in honor of  World Autism Awareness Day.  I've also copied this image which you can right-click and copy into a word document as many times as you want to so you can have a button to wear and extras to pass out to all your friends.

I thought I'd walk around town on Saturday with a pocket full of these buttons and a roll of masking tape.  Maybe.

Cranial sacral massage

About a year ago a friend told me she took her daughter to Kim Kee here in Marquette for cranial sacral massage therapy.  She said she believes it helps with sensory integration.  I decided to give it a try.  I got on Kim's waiting list and after several weeks, we found a mutually agreeable time. 

Kim runs a business called Essential Kneads with her brother, Bruce Kee.  They're located on the top floor of the beautiful old city hall building next to the post office on Washington St.

Cranial sacral massage is one of those topics I feel like I'm in over my head on as soon as I open my mouth.   I don't really understand it, but I have been hearing about cranial sacral massage being used with ASD kids from several sources.  I found this article online, and if you're interested, Kim can tell you more.  Her schedule is tight, but Bruce is just getting certified now to work with children as well and I've heard good reports on his work.

I now take Erin in every three weeks.  The first time we went it was a bit of circus as she wouldn't hold still.  Then each time since, she will hold still a little bit longer.  We both like going-- I think it makes her feel better, and I feel like I am in an oasis of tranquility when I enter Kim's office.