December 15th, Meeting Wrap-Up

We had a wonderful meeting lastnight. We didn't have a speaker, instead we had a quiet session of parents sharing. There was a lot of wonderful, helpful, and productive conversation through the evening.

Our next meeting will be held on January 19th, 2011 from 6-8 at the BHK Houghton Center.

I hope everyone has a safe and wonderful holiday.

Cheers!

Clarification

I have had a couple of emails this week asking what it means when I type "general public" on the fliers. I'm referring to individuals that are curious about our group for one reason or another, but they do not have any relationship with a neurodiverse child/individual.

Parents, cousins, aunts, uncles, grandparents, siblings, friends, neighbors, etc., are all welcome to attend all of our meetings, so long as their intentions are for a neurodiverse child/individual.

I hope that this helps.

Cheers!

Childcare

I have been having a great deal of difficulty with childcare for our meetings. Our Americorps worker became very ill for our October meeting and I wasn't informed of this until the night of. For our November meeting the Americorps worker had assured me she would be able to provide care and then did not appear; I still have yet to discover why.

I have two families that are volunteering their time with me as group leaders. The solution to the childcare problem has been to send a parent to the gym to provide care. This is not an ideal solution for anyone for many reasons.

One solution that I have is to ask a couple of teachers at the Little Huskies Child Development Center to help the group out. I would in turn ask parents to make a donation of whatever amount they are comfortable giving to help pay for the childcare. I would also make a donation to help out.

I understand that for a majority of our parents to attend our meetings, childcare is necessary. I welcome and appreciate any solutions that anyone can offer. In the meantime, I will continue to be in touch with Americorps and attempt to bring in workers who are looking for extra hours.

December 15th, 2010 Meeting

Our next meeting will be held on December 15th, 2010 from 6-8 at the BHK Houghton Center. At this time, we will not be hosting a speaker or workshop. This will be a regular meet and greet for parents; and is closed to the general community and professionals.

If anyone would like to do something special for the December meeting, please let me know as soon as possible.

Cheers!

November 17th, 2010 Meeting Wrap-Up

Thank you to Evan Dixon for speaking at our group about Special Education Law. It was a very informative presentation. Thank you to our Regional MAF Parent Mentor, Lisa Kahnke and Michigan Alliance for Families for hosting and sponsoring the event.

November 17th, 2010 Meeting

Michigan Alliance for Families is sponsoring Attorney Evan Dixon, for our November meeting. Evan will be sharing his experience and knowledge with Special Education Law.

The meeting will be held from 6-8 at the BHK Houghton Center in Houghton. The presentation is open to the community and professionals. Please join us in welcoming Evan.

Currently childcare is pending. I will notify everyone via email if we will not be able to provide childcare. In the meantime, please RSVP no later than November 16th, by 12pm.

Cheers!

October 20th, 2010 Wrap-Up

There was a lot accomplished at this months meeting. The other parent group leaders and myself had the opportunity talk at length about future meetings. A few areas that were covered were:

• Bringing in an attorney to discuss Special Ed Law (Evan Dixon will be coming to the November 17th, meeting to cover this topic.)
• Parent Advisory Committee (PAC) will be coming to discuss the work they do with parents and to talk about the IEP process ( a date has yet to be determined).
• John and Julie Dumprope will be covering Virtual Home Schooling at our December 15th, meeting.
• Brainstormed how to bring awareness/outreach to other families about our group.
  

These were just a few topics of conversation during the evening.

Our Americorps worker that has been helping us out with childcare at our meetings was very ill the night of our meeting and she was hospitalized. Lets hope that she is feeling better and doing well.

Group Leaders

This is a call to all the parents of neurodiverse children that attend our meetings. I talk constantly of parents having ownership of this group. A few of you contact me through email or phone and talk with me about ideas that you have.

I've had a long standing goal for this group to be run by all the parents for parents. I've been watching for a long time now and the group has several parents that are very committed. If any of you are interested in being a group leader (along with me) for your group, please contact me.

Your position as a group leader can look however you want it to. You can commit as much or as little time as you are comfortable with. Same for tasks, you can do whatever you are comfortable doing.

Some areas I would like some help in are:

• Food and beverages
• Childcare (when AmeriCorps can't help us)
• Community outreach
• Pulling in community resources
• Workshops
• Putting together a walk

These are just to name a few areas. If anyone has an interest in any of the above, or if you have some different ideas, please, please, please contact me.

Cheers!

August 31st, 2010 Meeting Wrap-Up

We had a great meeting with Heidi Knuuttila this month. Heidi did a Power Point presentation and discussions revolved around the IEP process, building a strong support team for your child(ren), working together and keeping the air positive (even when there's conflicts), and what parents can do to empower themselves to advocate for their child(ren). This was a great way to kick off the new school year. Thank you Heidi!

Heidi also shared with us that she is working on a website that will help parents and teachers navigate an IEP more successfully. Heidi would like feedback from parents on how to make an IEP a positive and productive process for the entire team. If anyone has any suggestions feel free to leave your comments hear on the blog or you can contact Heidi Knuuttila or Heather Poll.

I want to send out a HUGE thank you to John and Julie Dumpprope and Jason Poll for helping out with the childcare during the meeting. They did a great job, the kids had a blast, and the meeting was able to run smoothly because of them. Thank you!!

August Meeting Flier

Heidi Knuutilla, from Barkell Elementary School in Hancock, will be talking about how to advocate for your child within the school system. Heidi, will touch on how to empower yourself during IEP’s, staffings, and more.

Click the image below to view the full-sized flier.

Childcare: I'm in need of parents or older siblings if we are to have childcare at this meeting. AmeriCorps workers will not be able to assist us at this meeting due to the fact that they are not working on site at the time of our meeting. Childcare can be covered by anyone who is willing and able to help out. Of course, the more people we can pull in to help, the more childcare we can offer to others. If couples would like to tag team the meeting, or an older sibling is available that could help out, it would be appreciated.

Our other option is to bring our children into the meeting. With this particular meeting and topic, there shouldn't be any concerns with having our children present.

Mission Statement

During the summer while the group was in recess, one of the many tasks I wanted to accomplish was a mission statement. It took a long time to figure out what I feel to be an accurate message of the group, and it is as follows.

The mission is to provide information to parents and family members about community resources, school services, therapies, and much more.

The group is comprised of parents of neurodiverse children. The parents offer other parents a safe place to share information, give and receive emotional support, and work together to address common concerns. Parents also help empower each other through knowledge and experiences.

We came together to provide much needed emotional support, knowledge, and a sense of community. To create a place where we can come together and feel no judgment. We can talk, laugh, and cry about the same problems and draw strength from one another.

Together we are a unified voice taking our message to special interest groups, schools, professionals and the community.

*Monthly meetings are held every third Wednesday of the month, from 6-8 at the BHK Houghton Center.*

New Regional Parent Mentor

Many of you know that Kathleen Helppi moved downstate with her family earlier this summer. You'll remember that Kathleen was the Regional Parent Mentor for Michigan Alliance for Families. I'm happy to announce that Lisa Kahnke is now officially the new Parent Mentor for MAF.

Lisa has been attending our support group meetings from the very beginning. She will continue to attend our meetings as a parent/professional. Lisa has offered her resources through MAF for the group to utilize as needed.

If you have any questions about MAF you can review a post here on the blog from March 25, 2010. For additional information you can contact Lisa via email at: lisa@michiganallianceforfamilies.org
or phone: (906) 483-0442

August 31st, 2010 Meeting

It's August already and I'm jump starting the new school year with new goals and new hopes. With that, I'm happy to announce that Heidi Knuuttila, from Barkell Elementary School in Hancock, has agreed to come and speak to our group. Heidi, is the special education teacher at Barkell and she is going to share with us how parents can be proactive in the school system. She'll share some problem solving tips, conflict resolution strategies, and how to create a positive team building relationship between parents, teachers, principals, aids, and so on.

Heidi helped my husband and I work through some very sensitive concerns throughout last year. Our son was in Kindergarten last year and the experience was new to him but also for my husband and I as parents. Heidi helped us work with the principal and teachers to ensure that Noah had a positive and successful school year; and he did.

Again, I know that it's hard to think about a new school year when we're having such a lovely summer. Still, I encourage you to come and hear what Heidi is going to share with us. Even if you're a veteran in the school system, please come and maybe share what has worked for you and your child(ren). For those who aren't looking at school for a little while yet, please come as well, it's never too early to acquire knowledge; and I'm sure that what you'll hear will relieve any anxieties you may have.

The meeting will be held on August 31, 2010 from 6-8 at the BHK Houghton Center. AmeriCorps workers will not be working on site at that time so I do not know if I will be able to guarantee childcare. A flier will be following this post in a couple of weeks and I will know by then if I can offer childcare or not.

Have a wonderful August!

Potential Future Concerns

I've been trying to organize for when I resume group meetings in the fall. One of my largest concerns is being able to continue providing childcare. For the past two years we've relied heavily on AmeriCorps workers that BHK has generously provided. Linda Pucket was our key AmeriCorps worker and she was very loyal to our group; she donated her time to every single group meeting. Unfortunately Linda has moved out of the area and the guarantee to provide future childcare for each meeting is uncertain.

I know that providing childcare is what makes it possible for many people to attend the meetings. I'm trying to come up with solutions to solve this issue should it become a problem. I'm hoping that since I schedule the meetings so far in advance that I wont have to worry about this. However, I'm putting it out there and if anyone has a suggestion please let me know.

My other concern that I have is being able to cover meetings should I have an emergency or become ill at the last minute. At this time I have no back up in place and I run the group solo. If anyone would be willing to cover a meeting in my place, please email me or call me and let me know. I've been running the group for two years and only once did something come up and I thought I would have to cancel a meeting. Be assured that I would not be calling on people very often.

If anyone has any input to the above concerns, please get in touch with me. I would greatly appreciate any feedback.

Rained Out!

As you all know we were rained out yesterday and I had to cancel the picnic. I will shoot for another date, time, and location for the end of July. I will probably aim for more of an evening time so that more people can potentially attend.

Should anyone want to meet before next month please let me know, I'd be happy to set something up sooner at a coffee shop or park. I'm available by phone or email any day of the week.

Bad Weather for the Picnic?

If bad weather swoops in before our picnic today, the picnic will have to be cancaled. There is no shelter or structures of any kind at this park for us to stay dry.

In the event that I have to cancal our get together, I will try and send out some dates to try again next month.

I'm crossing my fingers and hoping for the best! Have a great weekend if I don't see you!

Picnic Directions

To get to the Douglas St. Park this Friday, you make a right turn at Little Caesars in Houghton. Go up a couple of streets and make another right turn onto Douglas. Drive down Douglas until you see the park on the left hand side; you can't miss it.

The picnic will be from 2:30-4:00 and please come even if you can't bring a dish to pass. If you haven't done so already, please RSVP me so that I know how many people to plan for.

There will be no childcare and parents are responsible for their own children while at the park.

I look forward to seeing everyone!!

It's a Potluck Picnic!

Kathleen Helppi, whom most of you know, is the Regional Parent Mentor for Michigan Alliance for Families. I'm sad to announce that Kathleen will be moving downstate in July with her husband and family. Kathleen's husband (Joe) was offered and accepted a job downstate. Kathleen was born and raised here and she has family that still resides here and she will be coming to visit, so this is not a permanent good-bye.

Since I spoke so many times at our meetings of having a gathering at a park during the summer, I thought it would be nice to do so now before Kathleen leaves. Please join me on June 25th, 2010 from 2:30-4:00 at the Douglas St. Park in Houghton. The gathering will be a potluck picnic so please bring a dish to pass. Please join us anyway even if you can't bring a dish to pass.

See you soon!

Summer Break

This summer the Parent Support Group will be breaking for the first time. From June to August there will be no planned meetings held and I will resume scheduling meetings again in September. The reason behind this decision is, in the past we have had a very low turn out at the summer meetings. Also, I want to take the summer to organize speakers and workshops for the rest of 2010 and the beginning of 2011.

I will still be available during the summer months via email, phone or I can meet with people in person if there is a need.

Unless there is a demand to hold meetings, this will be the plan for now but it is not set in stone. I would appreciate any and all feedback on this matter especially if folks want to continue meeting.

April 21st, 2010 Meeting Recap

A huge thank you goes out to Linda Reynolds (Copper Country Intermediate School District) and Kathleen Helppi (Michigan Alliance for Families) for hosting this months meeting. In observance of National Autism Awareness Month, Linda and Kathleen showed the Temple Grandin Movie and provided pizza and beverages.

After the movie the group gathered for a brief time to welcome a couple of new faces and to discuss the March workshops that MAF put on. For those of you who weren't there, Kathleen Helppi and myself have new information regarding IEP's and we are happy to share the materials.

April 2010 Group Meeting

Has it been a month already? Don’t forget that this month is Autism Awareness Month and we’ll be gathering to celebrate our children as well as share experiences, advice and information with each other. Please bring anything that has been helpful or has inspired you in your journeys.

Just remember that this meeting is only open to parents and immediate family of children living with a disability. If you are a professional or other member of the community, please keep in touch with us as future meetings will be open to the public.

You will find the flier below, click to view a larger, more-readable and printable version. Please feel free to share and distribute this amongst your friends and peers.

 

One last thing; there will be a light dinner/snacks as well as childcare. If you plan to use the childcare services, please RSVP as soon as possible in order to ensure we have the appropriate coverage.

Michigan Alliance for Families

I have received a lot of questions in regards to what the Michigan Alliance for Families (MAF) is and how it pertains to the support group. MAF is a resource that the group and/or parents can utilize as needed. MAF does not sponsor, run, nor coordinate the support group; the support group is completely voluntary and parent run.   

Kathleen Helppi (the original founder of the support group) and I were working together as the group leaders for a while. Kathleen has since taken on the role of Parent Mentor with the MAF and she is no longer going to be a group leader.

Elizabeth (Liz) Leach was the previous MAF Parent Mentor and unfortunate life circumstances have taken her out of the area. Liz had a special place in her heart for the support group and she took it upon herself to coordinate many of the groups up until she had to leave. I’m now finding that this has created a great deal of confusion for some parents and professionals. Thus, Kathleen is stepping away from the support group as a leader while she is working for MAF. She will be attending meetings as a parent/professional and offering her support and resources to the group as needed.

As stated above, the group is parent run. I listen to the questions that parents have and take suggestions to help determine the needs of the group. If anyone would ever like to lead a meeting, host a speaker/presentation, plan an event, or have ideas for future meetings, I encourage you to talk with me. This group is for parents and I want all the parents to have and feel ownership of the group.

I hope that this post clears up any confusion. If you’d like more information about MAF, you can contact Kathleen Helppi at: jahelppi@mtu.edu and/or visit the MAF homepage at:  http://www.michiganallianceforfamilies.org/

March 17th Meeting Recap

The Portage Health Pediatric Rehabilitation Team came and gave a wonderful PowerPoint presentation on Speech and Language Pathology, Occupational Therapy, the Sympathetic Nervous System, Sensory Integration Disorder, Apraxia, and more. Dr. Colleen Vallad-Hix also joined the presentation and talked about her practice with Cranial Manipulation and Craniosacral Technique. A few handouts on activities to do at home with your child(ren) were handed out; I will be posting these at a later date.

Next months meeting will be held on April 21, 2010. A speaker was originally scheduled but she will now be speaking at the meeting in May.

April Is Autism Awareness Month

A reminder that April is National Autism Awareness Month and it isn't too late to give me your ideas if you think of something you'd like the group to do, or a speaker you'd like to have.

 
Take care and enjoy this weather, hopefully it will last. :)

March 2010 Group Meeting

Can it be spring already? I hope that all of you have been able to enjoy the beautiful weather and the warm sunshine.

March is upon us, and this month we have the Portage Health Pediatric Rehabilitation Team presenting. You will find the flier below. Please feel free to share and distribute this amongst your friends and peers. This meeting is open to the community and to professionals.

(Click to view the flier, as a PDF document)

I have to ask that if you plan to utilize the childcare to please RSVP. This month we are only going to be able to allow 10 children due to being short handed on Americorps staff. If you RSVP and have to cancel, even at the last minute, please call me and let me know; that space could potentially go to someone else.
Hope to see you there!

February Meeting Follow-up

Reflecting back to last months meeting, you’ll remember that we had Lois Weber come and speak about Students Training to Mentor Peers (S.T.O.M.P). Next month, April 20th, from 1-2:30pm at the Finlandia University Finnish American Heritage Center, Lois and her students will be doing presentations. Please join me in supporting them.

Favorite Gluten-Free Recipe Websites

During the February 17th meeting Heather and I mentioned a few of our favorite gluten-free and almost-always casein-free recipe web sites.  Here they are, we hope you find them as informative and useful as we have!

• My Aspergers Girl (myaspergersgirl.blogspot.com)
  • M.A.G. is run by a lady named Erin whom I believe lives somewhere in Texas with her husband and daughters, one whom you may have guessed is living with Aspergers.  M.A.G is one of the first GFCF web sites that we started hoarding recipes from. As Heather will affirm, I don’t think there’s a M.A.G. recipe that we’ve tried that we haven’t loved.
• Gluten Free Girl and The Chef (glutenfreegirl.blogspot.com)
  • GFG is Shuana and Danny and they make good food.  Really good food.  They’re finishing a gluten-free cookbook now that we can’t wait to get our hands on.  Give their archive a peak, you’ll find so many wonderful recipes. 
• Gluten-Free Goddess  (glutenfreegoddess.blogspot.com)
  • A different ‘GFG’, but with plenty of excellent recipes, and amazing pictures to go with most recipes. 

One type of special diet which we haven’t talked a lot about is the “Specific Carbohydrate Diet” (SCD, see also www.scdiet.org). I will be forthcoming and admit that I am not terribly familiar with the SCD diet at this time, Heather and I have recently started following a blog of a lady who posts SCD recipes.  While we haven’t tried many of the recipes, they all look good, and I’m amazed at some of the things she creates with the ingredients she’s using.

• Milk for the Morning Cake (milkforthemorningcake.blogspot.com)

If these people can’t convince you that there is plenty of delicious food to be had once you have to give up gluten and/or casein, nobody can.

So, what are some of your favorite GFCF, SCD or other special diet web sites?  We’d love to hear from you in the comments section.

February 17th, 2010 Meeting Notes:

Thank you to everyone who came, we had a good meeting this past Wednesday. For those who couldn’t make it, here’s a brief recap of the evening.

Lois Weber (Transition Coordinator at the CCISD, www.copperisd.org) gave a PowerPoint presentation on her work with Students Training On Mentoring Peers (S.T.O.M.P). It was a very insightful and inspiring presentation; it shed light on some of the ways our children can be empowered later in life, and how they can also mentor and empower their peers.

Lois gave me a DVD titled: Helping Young Adults with Disabilities Reach Their Hopes and Dreams. The running time for the video is 46:37. The video is also available online by clicking the above link, or by searching the video-on-demand archive at www.mistreamnet.com. If anyone has trouble viewing the video online, please contact me and I can loan you the DVD.

Heather Store also came and spoke briefly about the Great Start Collaborative (www.ccgreatstart.org.) She talked about upcoming/proposed budget cuts to early childhood education programs and how the collaborative needs more parent support to help fight against these cuts.

After Lois and Heather’s presentations we shared stories amongst ourselves about our adventures ‘after the diagnoses’, and exchanged recipes and books pertaining to special diets. Please feel free to add some of your favorite books in the comments section of this post.

Looking ahead, our next meeting is going to be on Wednesday, March 17^th, 2010. We will be hearing a presentation from the Portage Health Pediatric Rehab Team, so save the date. A flier with more details will be forthcoming early next month, so keep an eye out for that!

February 2010 Group Meeting

Well, hopefully you've seen this flier before now as life has conspired to keep it from being posted here in a timely fashion. Our apologies.

You can view the flier for February's support group meeting by clicking here.
There is also a brief agenda.

Hope to see you there! 

Next Month and Beyond

Looking ahead to next month, the Portage Pediatric Rehab Team would like to come and do a presentation for the group. I'm working to schedule them for next month’s meeting which will be Wednesday, February 17th. Details and a flier will follow in the next few weeks. If there is anything specific you would like the team to talk about, please let me know and I'll pass it onto them.

Looking even a little further into the future, April is National Autism Awareness Month. Last year we held a potluck dinner at the Little Huskies Child Development Center and we invited the CCISD to do a presentation. No concrete plans have been made yet, which is why I bring this up this far in advance: I really want to hear your thoughts and ideas. Do we want to do a potluck again?  Something else?

Finally, I want to put out there that if anyone would like to host a group meeting to let me know. In the past we've done scrap booking, stress relief, yoga, a resource night and more – and we can do them again if someone wants to take up the mantle. Even if you don't want to host a meeting but you have an idea, we want to hear about it. Feel free to leave your comments here on the blog, or you contact us directly – we want to hear from you!

January 2010 Meeting Wrap-Up

At our last meeting on January 20th, 2010, we had Dr. Jill Kalcich present. She talked about probiotics, chelation therapy, food allergies/intolerances, and good nutrition. The basis of the presentation was, if you have a healthy stomach, you will have a healthy mind. There were a few new faces and many old faces present. A lot of great questions and wonderful conversation took place.

I've been receiving some emails and a few phone calls from other people and groups in the community that unfortunately heard about the presentation too late and would have liked to have joined in on the presentation. If there continues to be interest in this presentation, I'll ask Dr. Kalcich if she could come present again later in the year, perhaps expanding on topics already discussed. If there are any suggestions for topics, please let us know here in the comments, or contact me or Kathleen directly.

January 2010 Group Meeting

You can view the flier for January's support group meeting by clicking here.

December 2009 Notes and Documents

During December 2009's group meeting we were lucky to have attorney Kevin Mackey talk with us about special education law. He had a number of hand-outs that he made available.

If you weren't able to get one at the meeting, you can now get them here.

Click here to view all of the documents. For your convenience, here's links to the individual documents:

• Kevin Mackey's notes from the evening (2 pages)
  
• Resolving Special Education Disputes - (31 pages) Document from the Michigan Deparement of Education detailing the "resolution of disputes through alternative dispute resolution processes."
  
• Procedures for Dispute Resolution (2 pages)
• Timeline for 'Initials' (1 page) From the MDE, a timeline initial evaluations and initial individualized education programs (IEPs)
• Michigan Special Education Mediation Program Brochure (2 pages) From the MDE, a brochure about state-provided mediation programs. (Sorry, it's sideways, you may want to print this out in order to read it more easily.)
  
• Standards for Extended School Year Services in Michigan (7 pages)
• Referral to Special Education Services Timeline (2 pages) This one is from the Ann Arbor Parent Advisory Committee.