Resources

This Autism/Asperger’s Blog Hop was just started by Sueberry Lane, and I learned of it from Autism Learning Felt.

I haven’t used this type of link-up tool before, but when you add your blog, it will show up everywhere this particular one is posted. Pretty cool, huh?!?

Anyway, this is the original description, so please feel free to join in if it applies to you:

Please list your Autism / Asperger’s Syndrome Blog here.

Autism Advocate sites and stores are welcome also.

Even if your blog is not an “Autism Blog” but you have children on the spectrum I’d love to have you join the blog hop. This is a great way to connect with others that can relate to your story and lend a kind ear.

Have fun visiting the linked blogs and hopefully finding some new resources…and friends!

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Hopefully you caught yesterday’s post with Part I of my interview with Amy Fenton Lee of The Inclusive Church Blog. If not, I would encourage you to bookmark it for later (they don’t have to be read in order).

My first three questions dealt with the definition of inclusion within special needs ministry as well as some ideas of how it would apply in different situations and how typical families can reach out to families with special needs children. While time and space here allow for some very general answers, I found Amy’s responses to be extremely thought-provoking, and you can also find lots of nuts and bolts information on her site.

My last two questions involve one that is very practical and one that touches on something that comes up far too often for families in this situation – not feeling included at all.

What are some of your favorite resources for training and educating people who want to become directly involved in this area?

I started The Inclusive Church Blog largely because of churches’ great need for resources. There are some ministries and organizations that do a good job at creating basic awareness and education on why special needs accommodation is important. But I am not aware of many books or websites providing the nuts and bolt type “how-to’s”. The Inclusive Church Blog starts on the premise that a church has awareness for and recognizes the need for special needs inclusion. The reader (who usually represents that church as either paid staff or a volunteer) comes to the site not so much for inspiration but to find ideas and best practices.

Before this endeavor, I was a certified public accountant with a Big 4 firm and then worked as a regional sales rep for a national manufacturer. Because of my background I approach the blog as a way to help a church develop and execute a business plan. In addition, my father is the senior pastor of a large southern church and has authored a book on the subject of church administration. As a result, I understand the culture and commerce of church world. I do hear and recognize the concerns of many who serve on a church staff and this is why I weave in the issues of liability and risk management to a number of blog posts.

Part of the goal of the blog is to make readers aware of conferences they can attend and other resources where they find help. There are several blog posts already up and in the works that spotlight training opportunities and products that can help churches. I do speak at a handful of children’s ministry conferences teaching seminars such as “Teaching Tools & Behavior Management Strategies for Successful Inclusion”; “Supporting the Family through the Diagnosis”, and “Getting Started & Building the Team: Best Practices”.

As for other Resources I like:

  • Joni & Friends provides a number of in-print resources and training opportunities for individuals and churches interested in this topic.
  • Friendship Ministries provides curriculum and in-print resources to help ministries working with individuals with special needs. While most of the material is not developed for small children, much of it can be used for older children. This organization is well respected and their products are used by a number of seasoned special needs ministries inside of many denominations.
  • Local special education teachers and pediatric therapists are often the very best people to help a church start and maintain a special needs ministry. Every church doing special needs ministry (that I am aware of) has someone they call on for advisement from the fields of special education or pediatric therapy.

Finally, what would you say to a family who feels they are not welcomed or included at their church, despite their best efforts to communicate with the leadership about their situation and needs?

Grieve the disappointment, pack up your bags and try again! I have personally walked through the devastation of a situation where a children’s ministry program was not as it ought to be. While not special needs related, I have learned from my own experience that there are times we are called to move out of a certain church and ask God to guide us to the right fellowship of believers.

Through such a transition, a family can offer a surrendered heart, asking God to work in their lives even in the midst of the deep personal hurt. Praying for guidance to find the best church for the family’s spiritual nourishment and service is so important. I would also caution and advise a family to view leaving a congregation as a last resort. Recognize that God does often grow people AND churches in pain. So it may take a relational bump or bruise (and time!) to help a church move into special needs accommodation.

In the meantime, don’t give up on the corporate church! I am encouraged every day to learn of more communities of believers “called” to start special needs ministries. Keep trying…and keep in mind that the church who “failed” two years ago may now have new leadership, new volunteers AND a new calling to include children with special needs.

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Thank you, Amy, for your generosity and openness in sharing your personal story as well as what you have learned in your work with special needs ministry! I am so thankful for you and the other organizations who are giving so much of themselves to minister to children and families who are dealing with special needs.

Again, please feel free to post any comments or questions for Amy or myself below. You can also visit Amy and learn more about special needs ministry at The Inclusive Church Blog.

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A couple of years ago, I wrote a series of posts about special needs ministry at 5 Minutes for Special Needs. Although I haven’t written much about it since then, it is still a subject near and dear to my heart, and I know there is so much I still need to learn.

What a joy it was, then, to find out about Amy Fenton Lee, who writes an incredibly informative blog about the topic of special needs ministry at The Inclusive Church Blog. I am honored to welcome Amy as my first interview guest here at Another Piece of the Puzzle so that you can meet her as well.

For the interview, I posed Amy the top five questions on my mind regarding this topic, and she answered them all with grace and eloquence. I am posting the first three today and will follow up with the last two tomorrow.

How do you define an inclusive church for individuals with disabilities and their families? For example, does having a separate room available for children with special needs exclude a church from that category, in your opinion?

The term “inclusive” is going to mean different things for different individuals with special needs and different churches. Generally speaking, my opinion is that ideal church accommodation provides all three of the below:

  1. Fully inclusive opportunities (children with special needs fully participating in typical environments);
  2. A self contained classroom with its own planned lessons and activities designed to specifically meet the pace of the participating students who prefer this setting;
  3. The opportunity for a child to float between the above two environments depending on abilities or needs at any given time.

Every church I interview or observe puts their own touch on the definition of special needs inclusion. Churches just starting out in special needs ministry often provide only one environment, which reflects the needs of the individuals to which the children’s ministry first responded. But as church based special needs programming evolves, you typically see more advanced ministries offering all three environments and opportunities.

While I am a huge proponent of truly inclusive environments, one of my favorite churches doing special needs ministry is Shades Mountain Baptist Church (Birmingham, AL). Their “Hand-in-Hand” program is primarily focused on a self contained classroom catering to approximately 12 children with special needs. Together, the full class attends the typical children’s worship and then retreats back to their own classroom for the Bible lesson, crafts, and music. These children and their families have developed into a tight knit community and this environment works for them.

I asked one of the mothers of a participating child how she felt having her daughter in a self-contained setting at church, as opposed to having a buddy and fully participating in the typical children’s programming. Here was the mother’s teary-eyed response:

My child with limited verbal skills now has a set of ‘best friends’ thanks to this class. She absolutely loves coming to the Hand-in-Hand class every Sunday. This IS her community. So while she may not be doing all the things her typical peers are doing, she is happy and this setting works for her.

This mother and her husband serve as leaders of an adult Sunday school class in the church. This mother explained to me that without the Hand-in-Hand class this entire family wouldn’t be such an active part of the bigger family of faith.

Similarly, another mother of a very high functioning child with special needs shared,

My son often elects not to go to his typical classroom. We give him the choice of whether or not to go to the regular Sunday school class. More often than not he selects the Hand-in-Hand room.

The Sunday I observed the Hand-in-Hand classroom, this particular boy played a part in the drama re-enacting the day’s Bible lesson. This child was incredibly social and could easily be described as a class favorite among the other students and teachers.

My point in sharing about Shades Mountain Baptist Church’s program is not to say that self contained classrooms are the answer for every child and every church. Many of the churches I feature on the blog take a more inclusive approach using buddies. But because of what I have seen at churches like Shades Mountain Baptist, I tend to let the parents and children’s ministry together define “inclusive” for their particular church.

I do want to say that if a church is making a reasonable and concerted effort to successfully accommodate a child with special needs, their attempts are worth applauding even if there is opportunity for inclusion improvement. I don’t want to discourage churches who have small resource pools (volunteers, budgets, and facilities) that if they aren’t doing special needs accommodation a certain way, then they are failing at being “inclusive”. Because churches do not have tax dollars subsidizing their children’s ministries (like a public school would), ideal situations aren’t always possible especially in the short term.

What do you find are the common needs of families who have a member with a disability in regards to their attendance and, going beyond that, their involvement at church?

Generally speaking, I see two categories of need: 1) Accommodation and adjustments in typical settings for high functioning children with special needs; 2) The provision of loving and safe care for children who are medically fragile and/or with moderate to severe profound intellectual disabilities.

For the child who has a high capacity to learn, the parents are going to care more about the quality of the interaction and spiritual development their child is experiencing while in church care. And this concern impacts the other siblings’ involvement in the church.

So, for example, if mom wants to attend Wednesday night Bible study and an older, middle school-aged sibling wants to attend the youth group, then the children’s ministry is going to need to equip the workers teaching the child with special needs. Volunteer teachers may need to be added to the room, behavior management training could be helpful, and curriculum adjustments may be required for successful inclusion that impacts the entire family.

For the parents of a child with more significant intellectual disabilities or a child who is medically fragile, the primary concerns and needs of such a family will differ somewhat. In order for this family to attend any other church activities, they have to make sure the church caregivers can prevent and respond to medical emergencies. In addition, recruiting and keeping volunteers to provide this intense one-on-one care can require ongoing church coordination.

Keep in mind that safety-minded churches have a child protection policy which prevents one adult from ever being alone with a child. So there are times a church may have to figure out a way to have 2 competent and equipped adults available to care for a single child. The mother of this child is most likely less concerned about the curriculum and the craft than she is coordinating care for her child so that she can attend Sunday morning worship, let alone Wednesday night Bible study or the Thursday morning MOPS group.

How can the entire church body be involved in reaching out to individuals with disabilities and their families? What does it take to create a culture of acceptance and spiritual growth for “all who would come”?

Just like most things, living out your faith begins at home and in regular day-to-day life. I am the mother of a child who is considered typical (I only have one child). I am not a special needs mom. But a big part of my world is about families and children with special needs. As a result, my five year old son is around children with special needs often without really knowing it. And when he does see a difference and ask, we talk about it. Sometimes we include the parents or even the child with special needs in the discussion to explain the difference.

All that is to say, that “special needs” is already a part of my young son’s world. I wouldn’t exclude a child from my son’s birthday party invitation list because he has autism. Similarly, I wouldn’t exclude a child from the 5 year old Vacation Bible School class I teach each summer at my church. So if I’m willing to invite a child with autism to a birthday party, you bet I’m willing to adjust for and accommodate a child with a spectrum disorder in a church setting.

I see neighborhood play groups and general networks of moms often not doing a good job of integrating families of special needs into their social circles. My point is that as soon as typical families active in their congregations will start engaging families of children with special needs, they may help create the bridge for church inclusion. Just like any effective ministry, God is going to call passionate believers to enter the lives of families with special needs and then to take action in their churches. Typical moms can go to their church nursery coordinator, their MOPS leader, their women’s ministry director all to begin a dialogue about how to include a family where special needs is an issue.

Unfortunately in America, the church has not been a trendsetter by including people that look different. I live in the deep South, where religion plays a big role in our culture. Yet the make-up of our congregations are still largely homogenous and do not reflect our multi-racial society. While I see the movement in churches improving towards greater special needs inclusion (and the explosive growth in my blog’s readership is evidence), acceptance is still evolving.

Probably the biggest catalyst spurring a church to start a special needs ministry happens when an influential church member or already active family births a child with special needs. Or this can happen when such a family discovers their young child has a diagnosis like autism. Many churches are being forced to develop a formal plan for inclusion as an increasing number of their existing members are being affected by special needs.

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Stay tuned for Part II of the interview tomorrow! I know there is a lot to digest here, but Amy & I both welcome your comments and questions. In the meantime, you can visit The Inclusive Church Blog to find out more about Amy and her heart for children with special needs.

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As I sometimes do on Sundays, I would like to share a few links that I have run across recently which may provide some benefit to others (perhaps informational, thought-provoking or just plain fun).

Oh, you want to know who won the giveaway? All in good time, my friends, all in good time.

Okay, okay, I’ll wait here while you scroll down and see if it was you. Just make sure you scroll back up because there’s some really good stuff here in these links that you won’t want to miss. :)

The Links

Informational:
Walking the Autism Road with Someone You Love by Christine Hoover – a short article with highly practical suggestions for anyone who wants to be a friend to a family dealing with a diagnosis of autism or another disability. This was helpful to me to more easily articulate an answer to friends who ask me how they can help.

Preventing Meltdowns: Outsmarting the Explosive Behavior of Individuals with Asperger Syndrome by Judy Endow – very nice discussion of both the stages of explosive behavior and several solid strategies for preventing meltdowns before they start

Thought-Provoking:
Vaccines: Are you REALLY “Green”? at 1-2-3 Autism Free – interesting post about how many people who are concerned with going green and/or organic also choose to vaccinate their children, given the ingredients in said vaccines. I have to admit I’m on the other side of the problem, easily choosing not to vaccinate but having a harder time being truly green and organic in my household products and practices.

And, Finally, Just Plain Fun…
Top 10 Hazards of Being a Mom Blogger by Ellen at Love That Max – Number 1 is “Being called a ‘Mom Blogger.’” Enough said – now go and read the rest!

The Giveaway Winner

As promised on my Cowboy & Wills review, I am also announcing the winner of the free copy of the book. I listed out and numbered all of the entries from the top down, with Mrskroberts being number 1 and Shenkfam being number 13. I then ran a random number generator at Random.org, and this is the result:

The winner is number 2, Elizabeth Channel. Congratulations, Elizabeth! I’ve sent you an email asking for your mailing address, and the book will be sent directly from the publisher once I have that information.

And thank you again to Monica Holloway for sharing her son’s story with us!

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I have been collecting a bunch of bookmarked pages and emails with all sorts of information that I thought might be useful but didn’t have time to go through right then. I am finally getting to this project and wanted to share with you the fruits of my labors. :)

No-Food Birthday Cakes at American Partnership for Eosinophillic Disorders
I was doing some reading on eosinophillic esophagitis (for me, not my son), and found this great article at about how to make birthday cakes fun for a kiddo who can’t or won’t eat cake.

There are some very clever ideas here, and I’m sure something will jump start your creativity for the next celebration. Luckily, I have a few months to think about this one, but I definitely want to do it for Michael’s next birthday party.

What to Ask of An Occupational Therapist at The Thinking Person’s Guide to Autism
Wow! This guest post by Dr. Boucher from TherExtras blew me away – how I wish I had something like this when I was getting started!

No matter, I’m sure I will use it many times in the future and adapt it to any professional I am seeing for my son. And I’m also thankful to have been introduced to another great blog with tons of helpful information.

Autism Risk & Safety Management
This is the site of Dennis Debbaudt, a leading advocate for autism training for first responders. With the increase in encounters between law enforcement and people with autism, this is a crucial area of need, and this site has a lot of information about keeping your child safe and reaching out to the community.

I know several members of our Autism Society chapter take gift baskets to the police stations locally on their Memorial Day (where they remember fallen officers) and also ask for the opportunity to speak with them about autism. It has always been very well received by the officers.

National Parks FREE Access Pass
Did you know that a person with a permanent disability can get a free lifetime pass that is good at federal recreation sites? It is available to people who are US citizens or permanent residents and would also cover the person’s caregivers. The site has full details of the eligibility requirements and how it works, although you do have to obtain it in person so they can verify residency and disability documents.

Now that Michael is interested in traveling to different places, I am definitely going to get one of these. It will be a big help to the vacation budget!

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Cowboy & Wills: A Remarkable Little Boy and the Puppy That Changed His Life

I recently received a review copy of Cowboy & Wills: A Remarkable Little Boy and the Puppy That Changed His Life by Monica Holloway, which is the story of her son Wills’ diagnosis with autism and the journey she embarked on to find answers and the help that he needed. Amazingly enough, one of the best answers she found was in Cowboy, the golden retriever puppy who made the biggest difference of all.

As I read this book, I could really identify with Monica’s struggles to deal with all of the emotions that come along with having a child with autism, accepting the diagnosis and finding your way through the maze of therapies and programs that are out there.

Although my husband was not living apart from us, as Monica’s was due to his job, I definitely took on the burden of researching and filling out forms and making appointments for my son, as I think most moms do. (My husband is more than willing to take time off work for whatever meetings and other needs Michael has, but my schedule and organizational strengths made it natural for me to take the lead in that area.)

It is always difficult to see your child not fit in to a typical recreational or educational setting, and even harder when the professionals in those settings aren’t willing to do what it takes to make inclusion successful for everyone involved. I cried along with Monica when the director of Wills’ private kindergarten says they will deal with it:

Maybe we’d found a place where we belonged. I broke down into embarrassing sobs.
Neal was sympathetic. “I know this is difficult, Monica.”
I shook my head, rifling through my purse for a Kleenex or a Starbucks napkin. “I’m not crying because it’s difficult, it’s always difficult. I’m crying because you care so much. I’m crying because you aren’t giving up on Wills.”
“CCS is a community,” Neal explained. “It’s good for other students to see that someone can struggle and still be accepted.”

Monica seeks out many different resources for Wills’, but it is when they get him a puppy that they really see him start to come out of his shell. Cowboy is a natural draw for adults and children alike, and Wills begins to gain confidence and interact more with the world around him through her. Although she only lives for 2 1/2 years due to illness, she truly changes his life.

If you are interested in reading an excerpt from Cowboy & Wills, simply click on the link to download it. (Please let me know if you have any trouble with this, as it is the first time I have tried to link to a Word document on my blog.) You can also view the trailer below – here’s the link to the source if it’s not coming through on here.

Don’t Forget the Giveaway!
I am excited to be able to offer a free copy of this book to one of my readers with a US mailing address. All you have to do to enter is leave a comment on this post and include a valid email address so I can contact you if you win. Comments will be closed at midnight on August 7th, and the winner will be announced shortly thereafter.

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I am very excited to be going to the National Autism Conference in State College, PA in a couple of weeks. I have gone three times in the past, although I skipped last year because we took a big family trip out to the Midwest to see my family as well as some Grant Wood sites.

This year Bob is taking some much needed vacation time to give his mind a break from work and putter around at home or go to the music studio while Michael is at day camp and then will be doing fun stuff with him when he gets home in the afternoon.

I, meanwhile, will be enjoying the peace and quiet of the guest room at my brother-in-law’s house and spending most of my time learning about a variety of autism-related topics. Can you tell I am looking forward to it? ;)

One of the great things about this conference is that it brings together professionals from many different disciplines, as well as parents and other family members. The keynote speakers are often adults who have autism sharing their stories and insights. Plus, it’s only $25 for the entire week for PA parents, and they provide lunch as well as great snacks and even a continental breakfast spread in the morning.

The first year we went as a family, and Michael was able to take part in their Children’s Institute. They now give preference to children who have not been there before, so we were unable to get him in again, and I didn’t even try this year.

I’ll be sure to post what I learn, and if anyone reading this is going to be in attendance, please let me know! I would love to connect with you there. :)

Here are the sessions I’m signed up for. Let me know which ones you are most interested in hearing about:

  • Opening Keynote with Brian Abrams
  • NIH Autism Research Update (in which they tell us yet again how crazy we are for thinking autism has anything to do with environmental issues)
  • Implementation Science and Practice (this is a research symposium)
  • Teaching Flexibility: The Development of an Intervention for Children with ASD
  • Using the National Standards Report to Inform Training Agendas
  • Family Struggles: Living with ASDs
  • Collaboration: The Key to Successful IEP Teams
  • Practical Hints and Tips for Success at Home, School and the Community (I have heard these speakers before and really liked them.)
  • Crisis Management for Families
  • Innovative Use of Technology to Support Students with Autism (this is a promising practices session)
  • Intensive Clinical Models Designed to Modify Behavior in the Regular and Special Educational Settings (another promising practices session)
  • Closing Keynote with Deborah Lipsky

P.S. I just remembered that this year they are going to be posting the handouts online instead of handing out copies at the conference. They aren’t all up yet, but you can check it out if you’re interested in seeing any of them. This change is ostensibly to save paper, although I think the main reason is the handout trolls who would sneak into the sessions they were interested in but not attending to snatch the handouts, making it so there weren’t enough for the people who actually had signed up for the session. (Now there’s an interesting study in group behavior!)

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