Surveys for Parents of Special Needs Kids

i received this through my enewsletter from the ARC of Indiana, arcind.org. If you fit the description of who they are surveying, i encourage you to contact and participate!

SURVEY PARTICIPATION REQUESTED

Are you the parent, guardian, or primary caretaker of an adult family member with an intellectual or developmental disability who has applied for or received Medicaid-funded waiver services in Indiana? You may be eligible to participate in a research study through Indiana University-Indianapolis. Participants will complete a 10-minute survey and join an in-person focus group for a maximum of 2-hours to discuss the personal effects of Medicaid eligibility rules. To participate, contact Stephanie Hoffer at srhoffer@iu.edu or (317) 274-1488.

SURVEY PARTICIPATION REQUESTED

Caregivers of a child who received special education services in a public preschool in 2021-22 and eligible for services from Head Start, Public Pre-k, National School Lunch Program, Children’s Health Insurance Program (CHIP), Medicaid, and/or Supplemental Nutritional Assistance Program (SNAP), based on income, can participate in a survey about the experience with the child’s special education teacher. Earn up to $60 in gift cards by finishing the survey, interview, and follow-up text or email. Email nicole.adams@louisville.edu with questions.

 

Holiday article from the Indiana Resource Center for Autism, and a Max update

  As usual, Max is looking forward to Christmas this year.  Hopefully MyGuy and i can  prep ourselves mentally to put up our living room tree - tt means so much to Max, but the most initiative he'll take in getting it up is to wish us "Merry Christmas" out of the blue.

  However, he has two small trees up in his room.  One is a new, 4' prelit one, which he is enjoying.

  It seems in a sense especially important to keep this tradition in this year of universally lowered expectations.

The IRCA has prepared their usual article

of tips to help us help our children on the spectrum cope with the upcoming holidays.  https://www.iidc.indiana.edu/irca/articles/making-the-most-of-the-holidays-for-your-family-and-your-son-daughter.html

  Here's a short quote listing some items to be sure to mention:

Where and How Christmas Dinner Will Occur

Who Will Be Present at Christmas this Year

How Family Will Meet Virtually This Year

Where the Family May or May Not Be Going This Year: In other words, what family traditions cannot happen.

If Others Come Over, Rules about Wearing Masks, and Other Safety Precautions.  


 

At the end of the article are links to specific tips,  including social stories about home and visiting, and a fill=in calendar.

Helping your kid (or you) get used to a mask

This article came in my IN*Source newsletter.  With schools starting up, not to mention the autistic 3 year old & family removed from airplane, this seems like help you could use.
https://adayinourshoes.com/my-child-wont-wear-a-mask-school-and-iep-accommodations-ideas/

Also from IN*Source: Recovery and Compensatory Services for those still in school

This is also from the Indiana Department of Education, via the above-mentioned IN*Source newsletter:

From IN*Source: Survey for family caregivers re dental health

IN*Source's newsletter arrived in my inbox today.  One of the items it included is a survey for family caregivers of adult or child individuals with disabilities, regarding their dental care. 

i have heard of many disabled individuals with difficulties regarding dental care. Max is blessed that we are able to keep him with his nonMedicaid dentist.  The comfort the two have together is one of the biggest factors in his terrific dental health.

Here's the notice:

Calling Family Caregivers of Individuals with a Disability

Words on Wednesday: More from the Summer Reading List

  Left out a few books last week, and i really enjoyed them.
  These

Diploma or Certificate?: Indiana Diploma Decisions

   Last week i received a newsletter from IN*Source with a document link that i wanted to share with ya'll.
  When we made the decision for Max, i don't think we had enough information. You surely won't be able to say that after be able to say that after reading this pdf. 
  You wouldn't believe how hard it was to track it down without using a l
  This is the best i could do.  Most of the links i found take six lines of blog space! This one still isn't even a link to the actual document, however, if you prefer to learn in a video, there's some of those, as well as other resources.
  The one i'm specifically sharing is called Indiana Diploma Decisions.
https://instrc.indiana.edu/family-involvement/diploma-decisions.html
  To get there from here, read the intro paragraph, then click the box in the (horizontal) center of the page.  The one  
  The page below is a search result.  You should be able to get to the same pdf at the bottom of the page.It's the tall skinny one that says Indiana Diploma Decisions. But everything on the page is worth looking at, if that's where you are.
https://instrc.indiana.edu/transition-resources/resource-search.html?search=diploma+decisions
  The organization's home page: https://instrc.indiana.edu/
   Here is the organization which sent the newsletter:   http://insource.org/resources/transition-to-adult-life/

i told you i didn't know how to do this

i keep ordering the wrong fit!

Summer Max Report

  It's been way too long since i last posted about life with Max.
It's very tiring and frustrating.  There's tutoring and yoga and music to take him to.  Since he's a morning person, these are much earlier than i would choose to meet the day. 
  His aides rely on loaning him their phones so he can relax with videos.  MyGuy and i need to navigate the getting him a phone thing.  We prefer to do contracts, but apparently in this situation the pay as you go will work better.  The behavior management person mentioned a $20 tablet that should provide all he seems to want a phone for.  i'll have to check into it.
  i need to get another call in to VR and start that process again.  Maybe it will take this time.  Max is beginning to be ever so slightly open to the idea of moving to a group home, with me as transport person.
  Because of our book club, he's more interested in reading.  Our evening homework is pretty much entirely reading big books.  MyGuy is introducing him to all the space books he loved as a kid - some of which are older than we are.  They both enjoyed Tom Corbett stories.  On my homework nights, we usually catch up on the current club book - Wonder, by PJ Palacio, at the moment, but also have enjoyed some Christie short stories.

Benefit Saturday in Fishers, IN: Finding Voice, Bowling, Fun!

Two of Sharon's spectrum kids, demonstrating their typing skills

This event is now past, but click "Read More" to link to MyFriendSharon's site, and learn more about this amazing woman.  
Sharon writes:
Still time to participate in our make a difference day event! Special needs models! we have services focusing on but not limited to autism! Looking for nonverbal or those who use echolalia, we hope to help find your true voice! No charge to participate, we just ask that you spread the word! Fundraising for Special Olympics will be raised through bowling and food sales

Impasse?

Winter Photos from about 2000

   Max and i have settled into a routine these days.  Again.

Bloglove: Sharing from a fellow blogger

Leigh Merryday is an award-winning blogger.  She is a career educator, and a fellow autism mom.  Today i received a great post from her in my inbox, and you may wish to read it too.     The Autism Parent's 7 Keys to Sanity and Success

Changes & Growth

In the past week, we have:

• had our last speech session.  The therapist thinks Max needs more time relating in the outside world, not private lessons, though she encouraged us to consult as needed.
• contacted two music therapy companies, which could accept us but not on Max's schedule.  Daytime sessions, yes, very available.  Sessions at a time that wouldn't interfere with The Ultimate Purpose of Life, watching Thomas the Tank Engine, are harder to come by.
• arranged music therapy, with a 3rd company, to begin tomorrow.
• heard our son lament the absence of cheese slices in an unusual, but intelligent way:  he sadly said, "Milk."  Which is kinda something, that cheese comes from milk, is in his head when the word "cheese" is unlocatable.
• bounced our tutoring schedule all around to accomodate these changes and checkups which were set up thinking of the day service schedule with Company A.
• watched him eagerly ask for reading in our book club story, Theodore Boone: The Fugitive.  Until the previous book, The Autobiography of Santa Claus, Max has shown no interest in reading from these books between club meetings.

Lots more to take care of to get him to independence, but we're happy for what we can see.

Old Photo Shows Autism Example

  i recognize autistic symptoms in all sorts of places:

• an advice column letter in which the woman describes her trying brother in law, who monopolized conversations on his pet topics and wouldn't engage on other topics at all.
• a novel in which one of the the characters sure sounds to me like someone with autism.
• people describing their undiagnosed kid to me.

Today i came across an old post of mine
and realized it showed Max doing a very autistic type thing: climbing inside something, having something touching all around.

Questions

  One thing about living with a person with autism is the endless questions.

Thinking college, probably too soon

  John Elder Robison has once more put out a great blogpost.  The newest one is about college for students with special needs, specifically a person with autism but no/very little speech.
  Very thoughtful.  i wonder what college, if ever, for Max will be like?

Landmark College, an accredited two year institution, 4yr programs available; mentioned by Robison
Landmark College on Wikipedia
17 Great Colleges for Students with Special Needs, plus other resources

Team Quarterly Meeting

  Changes are coming for Max, and i think he's excited about them.

Conversing, sort of

Enjoying a Favorite Treat

Max sees his dentist once a year.  He's seen the same one since the beginning.  She'd like to see him twice, but, well, you know.

Do you listen to podcasts?

 My technical proficiency hasn't yet extended to trying a podcast or webinar, but no doubt many of you are proficient with these.
  InSource just sent me a list of their recent podcasts.  i've always found their information worthwhile, and recommend to you any of these, as well as any older ones or other information they have:

article which may be helpful

a lot has changed since this 1940s graduation

From my IN*Source e-newsletter, a link about the latest education law and its effect on special education: http://blogs.edweek.org/edweek/speced/2015/12/essa_special_education.html
If the comments haven't gotten too long, check them out too.