Autism in the Marquette, MI area -- Spring 2021

 

Hi all. 

This post is destined to be a bit of ramble/personal reflection but also a "How things stand now (as best I can tell)" statement, in terms of local resources.   I seem to have lost all the SEO I had with this blog before I moved to Facebook. Hopefully by posting semi-regularly, it will come back.  If you want to contribute to the conversation or alert me to something that is going on, leave a comment. Comments are posted after after I read them, unless they are marked private, or deemed irrelevant to other readers, or if the message is angry*.    

Things that have changed since I started this blog 11 years ago:  I now work full time, my child is a teenager, and there is this global pandemic that effects just about everything.  

A couple of things haven't changed: 

 SAIL (Superior Alliance for Independent Living) is still the best local place for resources for adults or soon to be adults (that I know of).  There's also Aktion Club, which usually offers fun stuff to do, ways to be involved, and camaraderie.    Their FB page is pretty quiet at the moment.  Still a good place to reach out to.  They are supported by the Superiorland Kiwanis, which helps give the group some stability.  

For babies, toddlers and kids and teens and their educational/developmental stuff there's MARESA, (Marquette -Alger Regional Education Service Agency).  They provide birth to three services, including playgroups (when safe to do so), and they provide special education services and oversight to all the local ISD's in Marquette and Alger Counties.  There are two Autism specialists working for MARESA. If you aren't already working with one of these two dedicated people, I recommend you seek them out.  They have the same human limitations as the rest of us, but they will try.  

MARESA also hosts a Special Education Parent Advisory Committee (SEPAC).  According to the last set of minutes posted online, they were to meet in March via zoom.  Not sure if the meeting got cancelled or where things stand.  They also have a Facebook page.  Meetings do get cancelled or rescheduled, but they do meet fairly regularly and they are the most stable support group I know of for parents of special needs kids (most regular attendees are parents to kids on the spectrum).  MARESA will pay you an honorarium for participating to help with transportation and child care costs.  Sometimes child care is provided, sometimes not.  

For professional help outside of school, everything becomes trickier (as if it weren't tricky already).  Pathways provides comprehensive support for families that qualify for Medicaid.  Their exact limitations change with the whims of public funding.  But they do offer comprehensive help.  I've never been able to use their services myself.  

If your family doesn't qualify for Pathways services, there are two other options for ABA** help locally that I know of.  The BEAR center at NMU and Functional Behavior Services.  I believe both options work with a sliding scale and or insurance. 

Other useful services:

OT (Kirsten Matthews at Bell helped us a lot when my daughter was young and we've recently discovered Laura Alexander, who's located closer to us (UP Rehab) and seems to be able to connect well with my favorite adolescent.)

Speech:  I've worked with Kate Kenney who conveniently works with Kirsten the OT.  I can speak highly of her.  We've also had some success with keeping "speech" in my daughter's IEP.  SLP's tend to have different strengths.  Different kids have different needs.  On a good day we get a match.  

Other therapists.  In recent years we've had more success working with therapists than we did when my daughter was younger.  ABA wasn't the answer for us.  I now shrink at the words "behavior modification" and now seek our "developmental support."  Not locally supported, but highly useful is the "Lives in the Balance website."  Lots of free resources for parents.  If you've ever heard someone say "Kids do well if they can" and thought that made sense, you will like these resources.  I wish I could direct you to someone in the community who could really support you with this approach, but I don't know of anyone.  

We have found some good people who use a CBT approach with anxiety and who just connect well with kids and teens.  For us it's been a journey of trial and error.  

Activities:  

I get a little sick in the gut when I think about the lack of fun stuff to do for kids on the spectrum.  (Covid makes it all harder.)  I'd really like to find something that is age appropriate, will appeal to my picky child, will get her outside and moving, will help organize her brain, will get her eating healthy, and above all help her make friends.  I've been looking for this for over a decade.  It's not easy, it's not great, but there are glimmers of potential for checking some of the boxes.  

Moosewood Nature Center has been trying to make itself an "autism friendly" destination.  We like it there.  Like the board walk.  

Michigan Audubon Young Birders appeals to my kid's special interest.  It's not perfect:  no other local kids, it's online, but it's something other than playing on her phone.  Try to find things that appeal to special interests.  I got this advice from the young man who wrote "Funny, you don't look autistic."  Manga club, Lego club, stand-up comedian club.  Highly specific interest clubs appeal to other quirky kids who might be able to connect with your quirky kid. 

Wisconsin Autism Association hosts monthly online teen hangouts.

Other Michigan Resources:

StART, or Statewide Autism Resources and Training is based out Grand Valley State University.  They bring autism training to Marquette from time to time, mostly offered to schools.  Nag your principal to send their staff to this.  It's not perfect, but it's good.  

Michigan Alliance for Families provides support to families that includes stuff like IEP training and transition programs.  It's nice having materials that focus on Michigan specific resources and legislation.  Our regional rep, Sally Beauchamp (sally.b@michiganallianceforfamilies.org) is located in Iron Mountain, but she will return your calls and emails. 

 

*Go ahead and be mad if that's how you feel.  I am sure your anger is justified.  I find it's best if I can write it out in a journal-- that helps defuse the anger.  Then the goal is to get to the raw energy behind the anger to fuel constructive conversations and help create change.  Please don't scream at me or your kid or their teachers.  Yes, I've done this, and it's never helped the situation.

**ABA is another can of worms.  You might find that this particular supposed solution to all kids on the spectrum just isn't right for you and yours.  It's also quite possible that it's not right for anyone.  I don't know.  ABA doesn't make sense to me, but I know too many people who I respect who swear by it so ...