Tag Archives: special needs parents

Beauty Perseveres

As we come to the end of Autism Awareness month 2017, I would like to thank the contributors to our Autism Moms and Dads Blog Interview Series for sharing a bit about their lives in the world of Autism.  It has been particularly interesting to get the Dad’s perspective this year in addition to the Moms. I have also enjoyed the opportunity to re-connect with both local and national friends and make some new FIN friends along the way. Many thanks to those that interviewed: David Rizzo, dad to Danielle from New Jersey, Ruth and Rick Robins, parents of Tripp in Virginia, Tim Craig, dad to Clinton, from New Jersey, Janet Shouse, mom to Evan Shouse from Tennessee and Michael Hoggatt, dad to Summer from California. You are all an inspiration to me and it was a pleasure to “meet” you and your children through these interviews. 

Blessings to all those out there that love and care for people affected by autism. You are doing a great job!-K. Jackson

Beauty Perseveres

As I sat on my front porch, on a lovely late-April morning, a sweet little flower caught my eye. Not that flowers are unusual in the spring time, especially in Virginia, but this one seemed to be growing right through our tiled front porch! And the words “beauty perseveres” invaded my mind.

The writer in me jumped at the chance to use this unusual bloom as a symbol of the strong, determined and undefeatable autism moms, dads and children that I have met on my own parenting journey. Persons who have autism and parents and caregivers who, despite challenging behaviors, multiple medical needs, serious communication and sensory challenges and more, do persevere. They persevere even when it seems impossible to do so. They persevere through the tiled foundations of our society’s misunderstanding of autism, through uniformed attitudes and the unrelenting hyper-vigilance required of some moms and dads of children with autism. They persevere because they love their children.

Recently, our family has faced quite a few challenges; from our daughter’s six day hospitalization in the Intensive Care Unit of our local Children’s hospital to last summer, when we were dealing with some extremely challenging behaviors related to an anxiety disorder, (and let’s not forget the recent aggravating car accident that required a new vehicle), it has been a whirlwind. Yet through God’s grace and a generous dose of His strength, we have persevered and come out on the other side, seeing the beauty in our daughter, in our lives and in our amazing God.

“…And we rejoice in the hope of the glory of God. Not only so, but we rejoice in our suffering, because we know that suffering produces perseverance, perseverance character and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts…” Romans 5:2-5

Most Christians, when presented with the term, “perseverance” would go right to the above scripture in Romans. “Suffering produces perseverance” we are taught. But the most important part of these verses to me is not that we suffer (because everyone suffers, whether or not they are affected by any kind of disability) but that through suffering we eventually get to hope.  This is the beauty I see out of our perseverance; a hope that sustains, that draws others to God and helps us appreciate the gifts that our beautiful children with autism bring into our lives.

Just as that flower grows through the seemingly impossible place on my front porch, I pray that all of those affected by autism persevere through the difficult challenges that ASD can sometimes bring and experience the beauty and hope of God’s love for us all.

Thanks be to God.

 

 

Autism Moms and Dads Blog Series-Interview # 3

I did not have to look far to find these parents who graciously both agreed to respond to our interview questions. Rick and Ruth Robins are parents to Tripp, a third grader at The Williams School in Norfolk, VA, where I also teach band.  Although we have just begun our friendship, Ruth has already been wonderfully encouraging and supportive of my work my FIN and we have had some great discussions.

There are SO many parents out there who are trying to navigate the world of integration with children who have ASD but lean more toward the high-functioning/Asperger’s side of the spectrum.  We appreciate Rick and Ruth’s  willingness to share a bit of their experiences thus far. 

Rick and Ruth Robins-Interview #3

Tripp Robins

Question: How old was your child when they were diagnosed with autism?

Ruth: Tripp was five but the signs had been there since he was 15 months old. Family (specifically my mom) had been trying to tell us something wasn’t right but I was in denial. Can you share how you felt when you received that diagnosis? I felt numb, then very guilty. I tried to figure out what caused it. Maybe it was the medicine that I was on when I was pregnant with Tripp. Aspergers runs throughout my family so I didn’t have to look very far to see that we have a genetic predisposition towards it.

Rick: Our son was 4 when he was diagnosed with Asperger’s Syndrome. I was perfectly unfamiliar with autism at the time of his diagnosis. Google forays into the subject informed my earliest preliminary senses of what it meant for our son and our family. It was an overwhelming time. It was a gut-punch to look at the statistics on autism as they related to work, marriage, independent living, and the metrics that typically frame our expectations for our kids’ lives. It was particularly hard for me to think that my son could be socially challenged and disadvantaged. I was also surprised at the difficulty of finding the necessary therapeutic and educational resources. There is no single, easily accessed clearing house for resources for parents to point them in the right direction to necessary behavioral therapies and other resources. Fortunately for us, my wife’s openness about our son’s autism helped us to find therapists and a school for autistic children, both of which helped him immeasurably.

Question: How has living with autism affected your family? (immediate or extended)

Ruth: It, without a doubt, has taught us grace, grace, and more grace. Also, how to love in a way that is beyond our physical capability.

Rick: It has been difficult. It has also had a maturing effect on all of us. Immediately after his diagnosis, we were plunged into a crisis mode, trying to deal with his behavior and finding the necessary educational and ABA therapy programs and medical resources. We knew that an early intervention in his behavior was important, and we did everything that we could. That included an ABA therapy school, ABA therapists on weekends and as needed, neurofeedback therapy, finding a pediatrician specializing in autistic children, allergy testing, diet modification, etc. Crises often have their own life cycles, and we have fortunately been able to make progress through this as a family. He was able to successfully transition into a small private school after two years in the autistic school. We were on pins and needles as he transitioned schools, but he did great. It has never been a linear experience. Behaviors and tics emerge, get addressed and extinguished, only to give rise to other behaviors, foci, or issues. It has reshaped our expectations and capacities to have more bandwidth in our responses as parents and family members. It has made me much more empathetic.

Question: What is currently your biggest challenge as an autism mom/dad?

Ruth: Tripp’s perseveration on things can be really difficult. He won’t let things go and when he doesn’t get his way it can lead to a meltdown. He then feels guilty because he knows it’s not okay, but his emotions take over.

Rick: Our son is 10 and has a 13 year-old neurotypical sister. In the early years our son’s atypical behavior were the focus of a lot of our energy. This inevitably created asymmetries in the time, attention, and behavioral expectations that we exercised with our children.

 

Question: What is currently your greatest joy as an autism mom/dad?

Ruth: After YEARS of intense therapy Rick and I see Tripp coming into his own. He is able to articulate himself better and is beginning to have self-acceptance. We also hone his natural God given gifts to the best of our ability.

Rick: I have learned to appreciate my son for who he is, including his tendency to perseverate on issues (he hates our dog) and occasional, epic meltdowns. But he is an incredibly lovable kid, and he loves to fish with me, which gives us a great medium for our relationship. He is unique in his interests and extremely smart, so we are excited to see how he will use his gifts.

Question: Has autism affected your faith?  If yes, how so?

Ruth: Yes, it has made me lean on God more. There were many, many times I reached the end, I had nothing left and it was “Your grace is sufficient for me” that kept me going. I knew that each second, minute, hour, and day God’s grace was enough to keep me taking one step in front of the other.

Rick: Individuals within our church family have made a big difference in our lives and in our son’s life in particular. When he was about 4 to 6 years old, he was wiping out in classroom settings, and that included Sunday school classes. A family in our church, and their sons, who are passionate about autism, took turns being our son’s “buddy” in Sunday school, and they would help him to have a successful class experience. Others have filled that role during church services, since he performs better sitting with them than sitting next to his sister! He has been well loved by our church family.

Question: Is there anything else you would like to share about being an autism mom/dad?

Ruth: We have learned to appreciate each of our children for who they are and who God created them to be, not to try to mold them into something they are not. Also, we have learned to focus on what really matters, the rest in just extra fluff.

 

Autism Moms and Dads-Interview #4

One of the blessings of being director of Faith Inclusion Network, is being able to reach out to FIN friends around the country and share in our projects. Many thanks to a wonderful FIN friend from New Jersey, Ms. Anne Masters, Director of the Pastoral Ministry with Persons with Disabilities in the Archdiocese of Newark, NJ,  for sharing my request for an interview with autism moms and dads with the families in the Newark Archdiocese. Mr. Tim Craig generously responded to this invitation for an interview. Thank you Tim for being so open and honest. We love to hear from the autism dads and open our arms to another FIN friend in New Jersey! Happy Easter, and thank you for sharing about your beautiful son, Clinton.

Interview #4-Tim Craig

Clinton Craig

Question: How old was your child when they diagnosed with autism? Can you share how you felt when you received that diagnosis?

 Tim: Clinton was about 27 months old when we received the diagnosis of classic autism.  Like many autistic children, he had perfectly normal development until age two (he had around 75 words and played and interacted with other toddlers in our Greenwich Village neighborhood normally). When my wife and I returned from our first trip without him since he was born (a week in Mexico), we noticed that he had stopped using his words, was not making eye contact, and was isolating from other children. In the classic sense that parents blame themselves, I thought he was “punishing” us for leaving him. Our pediatrician sent us to an ear, nose and throat doctor and neurologist, and when everything checked out fine, the neurologist referred us to a psychiatrist.  After visiting with and observing Clinton for about 45 minutes, we came back a week later and received the diagnosis.

To say that we were devastated is a huge understatement.  We knew virtually nothing about the developmental disorder – my wife was in tears the entire night.  We were due to go on a vacation in Vermont, near where we had both gone to college at Dartmouth in Hanover, NH, and I went to the library stacks and read everything I could find about autism.  I joked that I probably spent more time there that weekend then I did as an undergrad!  We were very fortunate in that our psychiatrist knew the author of the book “Let Me Hear Your Voice,” the story of a woman who had two children recovered from autism through intensive behavioral therapy, and, after talking with the author, we immediately started Clinton on a program of behavioral therapy at that early age.

Question: How has living with autism affected your family? (immediate or extended)

Tim: The first immediate affect that Clinton’s diagnosis had was our move to New Jersey (although I continued to work in New York City).  At that time NYC had little to offer in terms of specialized schools for autistic children.  We ended up in Maplewood, New Jersey, and Clinton’s first school was in Montclair, New Jersey.  It also affected our decision not to have more children (my wife comes from a family of eleven kids!), as my wife was 37 by then, and we knew the odds of having another autistic child were increased.  More importantly, we realized that taking care of Clinton was going to be more than enough of a challenge as it was.

In terms of extended family, it was difficult for us that both of our extended families (for the most part) were back in Michigan, 600 miles away.  Many other parents of autistic children had the benefit of extra help from extended family that lived nearby.  However, my wife’s sister who lived in Vermont did visit and help out often, and whenever we went back to Michigan we were able to get a bit of a break. Emotionally, our families offered a lot of valuable support.

Question: What is currently your biggest challenge as an autism dad?

Tim: I feel like our biggest challenges are behind us.  Clinton experienced a lot of problematic behaviors with the onset of adolescence (breaking windows, breaking any glass or ceramic object he could find, self-injurious behaviors and hitting others) that made for some really rough times.  Although every once in a while one of the old behaviors will flare up, he has seems to have mellowed as he has gotten older (I am sure that the medication he has been taking has helped).

Probably the biggest challenge right now is finding things for him to do that interest him; if left alone, he will just “stim” on watching videos (yes, video tapes on a VCR!) or listening to his cassette tapes (yes, on a “Walkman” – we should buy stock in eBay!). He loves to hike in the outdoors, and in the winter he plays on the special needs hockey team the New Jersey Daredevils (have to give a plug to this great organization – Clinton has been with them for over 12 seasons). In the summer he loves swimming in our local pool, although not as much as he used to.  So I would say our biggest challenge is to find things for him to do that he enjoys and that engage him in a positive way.

Question: What is currently your greatest joy as an autism dad?

 Tim: As corny as it may sound, just watching Clinton smile and experience joy.  He has the greatest smile and laugh – they only seem to disappear when a camera is pointed his way!  I am also so proud of him when he is able to order for himself at a restaurant (his speech is very hard to understand – it’s frustrating for me and his mom, because we know what he is saying, but others just cannot pick up on it most of the time), or say the Lord’s Prayer at Mass.  Really my greatest joy is just getting to spend time with him – when I was working at a law firm or for a corporation in the city, I really did not have that much time to spend with him and I really regretted that.  Now I feel like I am much more of a part of his life, and I would not trade that for anything in the world.

Question: Has autism affected your faith? If yes, how so?

Tim: Autism has made me more humble and grateful for all of God’s gifts.  Our church has been so welcoming to Clinton – they have accepted him as he is, as one of God’s children.  Two of my proudest moments as a dad have been when Clinton received his First Communion and Confirmation, and that would not have been possible without the kindness, acceptance and understanding of our church (St. Joseph’s of Maplewood).  So often people have come up to me after Mass and praised me for being such a great father, just by observing me with Clinton during the service (he likes to sit right up front, in front of the choir and organ!).  It always embarrasses me, and I tell them I am just doing what any father would do.

So yes, autism has deepened my faith and given me more reason to give Him glory and praise.  Tomorrow is Easter Sunday, and I look forward to celebrating this joyous day with Clinton, the greatest joy of my life (along with my wife – she might read this!).

Question: Is there anything else you would like to share about being an autism dad?

Tim: Being an autism dad has been a challenge, but it has paled in comparison to the challenge(s) my wife has faced. After Clinton’s diagnosis, she switched careers, and received her teaching certificate in behavior analysis, and for the last several years has worked in early intervention with the Douglass Developmental Disabilities Program through Rutgers, going into the homes of 2-year olds and using the same behavior modification techniques that helped our son.  So it has been autism 24/7 for her for quite some time, which is a really tough road to travel.

While our son is not one of the lucky few who were completely “recovered” from the disorder, and he will always need assistance and constant supervision in living on a day-to-day basis, it has been wonderfully rewarding to see his progress and to watch him grow into a young man.

In this Autism Awareness Month, I pray that we will someday find a cause, and eventually a cure, for this disorder.  In the meantime, I will continue to try to be the best “autism dad” I can be for Clinton.

 

 

Autism Moms and Dads Blog Series-Interview # 2

Janet Shouse is an autism mom from Tennessee. She was connected to us at FIN through our friends at the Vanderbilt Kennedy Center where she serves as a Disability Employment Specialist with Tennessee Works, http://www.tennesseeworks.org/ and is the Program Coordinator for the IDD Toolkit, http://vkc.mc.vanderbilt.edu/etoolkit/

Thank you so much, Janet, for sharing some of your story and the pictures of your handsome son, Evan.

Janet Shouse-Interview #2

Question: How old was your child when they were diagnosed with autism?

Janet: Evan was 27 months old.

Question: Can you share how you felt when you received that diagnosis?

Janet: My husband, John, and I had done our own research into autism after Evan had received a very depressing speech and language evaluation, because we felt sure that Evan had autism. The speech pathologist had then referred us to a developmental psychologist for an additional evaluation. But despite our research, I still felt as though someone punched me in the gut when the psychologist said, “Evan has mild to moderate autism.” At that point, our son had lost all language, would not respond to his name, had little interest in interacting with us, would elope and had no sense of danger.

Question: How has living with autism affected your family? (immediate or extended)

Janet: First of all, we felt compelled to move almost immediately to a neighboring county in order to receive anything close to appropriate services for Evan when he turned 3. We still have had to battle the school system multiple times over the years to get services and Assistive Technology. Also, despite our county’s reputation for being inclusive and our best efforts, our son has spent much of his school day in middle and high school in segregated settings. These repeated battles are emotionally draining. Our family has been and is still very limited in the places we can go, or the vacations we can take. At 21, Evan still requires 24-hour supervision, and at this point, we have very little help with that, so often either my husband goes to an event or I go. Both his older sister and his twin brother have had to make significant adjustments throughout their lives because they have a sibling with a significant disability.

On a more positive note, both my husband and I became deeply involved with the autism community as well as the broader disability community soon after Evan received his autism diagnosis, and we continue in this work. Evan’s sister is also now a professional in the disability community, and his twin is working on becoming a social worker.

Question:What is currently your biggest challenge as an autism mom?

Janet: We are still trying to find a way for Evan to have a functional means of communication, so that he can tell us what he wants, what he needs, if he’s sick or in pain. And we’d LOVE to know what he’s thinking and feeling.

Question: What is currently your greatest joy as an autism mom?

Janet: For several years, Evan seemed very unhappy and on edge all the time and experienced significant behavioral challenges, but in recent months, he has been much happier and willing to engage with us. The light in his eyes, the smile on his face, his willingness to once again hug, cuddle and interact with us brings me great joy.

Question: Has autism affected your faith? If yes, how so?

Janet: While having a child with autism made me examine some things in Scripture that I had not spent much time on before, I believe I have drawn closer to God, as I’ve had to rely on Him in ways that I had not previously. My prayer life certainly blossomed. However, as Evan has gotten older and exhibited more significant behavioral issues, we have not been able to participate in the life of our congregation as much as we would like, and that makes me sad.

Question: Is there anything else you would like to share about being an autism mom?

Janet: I would encourage parents to learn to accept their child as he or she is, as best as they are able, while still providing the therapy, support and services the child needs to be as successful as possible. The unhappiest parents I know are those who really, really want their son or daughter to be “typical,” and who are not able to accept the fact that their child isn’t. Those parents who accept that their child has autism and will always be different seem to find joy in the lives they lead.

Autism Moms and Dads Blog Series Interview#1-2017

A big FIN welcome to Mr. Michael J. Hoggatt, a professor at Saddleback College in Mission Viejo, CA in the Disabled Students Programs and Services Program. In our first interview of the second annual Autism Moms and Dads Blog Series to celebrate Autism Awareness this April, Michael shares about his beautiful daughter, Summer.  Thank you for your contribution Mr. Hoggatt and especially for giving us a dad’s point of view.

Interview #1 with Mr. Michael Hoggatt

  • Question: How old was your child when they were diagnosed with autism? Can you share how you felt when you received that diagnosis?
  • Michael: Summer carried a number of diagnoses up until age 6 or 7, including MR. At age 6 or 7 Special Education and local Developmental Services (Regional Center in California) re-diagnosed her as both IDD and ASD.  My wife and I thought the diagnoses was appropriate.

Summer and her Mom

We met Summer at age 3 ½ after she had lived her entire life in the foster care system. We knew she had significant delays and a history of abuse, so 3 -3 ½ years after meeting her, we were aware of her needs regardless of the label. However, we also knew that some labels were easier to wrap services around, so there never any grief or significant concern over receiving a diagnosis of ASD.

  • Question: What is currently your biggest challenge as an autism dad?
  • MichaelBeing marginalized as a dad. Too often moms are contacted by the school or the people Summer is currently working with.  I go to every IEP and every meeting about her and my wife and I are a team. This seems to be a foreign concept to many of the ABA and Special Education administrators. It is difficult to explain that in both the secular and sacred realms, that I probably spend more 1:1 time with my daughter than anyone else (including her time with my wife).

Balancing the need to create a typical environment while responding to both her developmental as well as attachment needs is another challenge.

  • Question: What is currently your greatest joy as an autism dad?

  • Michael: Every day there is a difficulty with Summer whether it is related to her hygiene, her personal space, or her aggression. Yet, it is so far outweighed by her genuine kindness and love. Watching her make progress in a skill or watching her discover something new in the world. Right now our thing is sitting next to each other holding hands while we watch the Cooking Channel.  
  • Question: Has autism affected your faith? If yes, how so?
  • Michael: I am closer to God but further away from my peers.  I have seen how God has worked in our lives. I have seen God work in Summer’s life. Despite living 3 ½ years in 9 different placements full of abuses and neglect, and despite losing a kidney to advanced, near terminal, kidney cancer at age 5, she is still hopeful. She is still able to show me God’s grace on a daily basis.  However, while we are able to attend our corporate worship service, we have never been able to participate in a small group do to the need for one of us monitor her since there is no “buddy,” or 1:1, outside of Sunday mornings.  
  • Question: Is there anything else you would like to share about being an autism dad?
  • Michael: Looking back on the challenges associated with fostering/adopting a girl with her diagnoses and challenges (including the loss of relationships, the emotional strain, the health scares, and more) I know that I am closer to God, I am closer to my wife, I am a better father to her and her brother (Elijah age 6), and a better version of me because she is in my life. As such, knowing what I know now, not only would we do it all again, we probably would have tried to do it sooner.          

 

 

If you are interested in reading more from Mr. Hoggatt, he contributed to the book, Another Kind of Courage: God’s Design for Fathers of Families Affected by Disability by Dough Mazza and Steve Bundy, published by Joni and Friends: Agoura Hills, CA 2013.

 

    

  

 

 

 

A Call to Encouragement

Last Thursday evening over sixty people from our community gathered at Second Presbyterian Church, Norfolk to support FIN and learn more about the current work and vision of our growing organization. Beginning our 10th year, this is an important and exciting time in the development of our small non-profit, working towards our dream of making the congregations of Hampton Roads the most inclusive and welcoming in the country-envisioning a world where all people affected by disability are accepted, included and celebrated in our faith communities.  Many, many thanks to members of Second Pres., volunteers and supporters who made the reception a wonderful first time event.

In the wake of this successful gathering however, I began to feel extremely overwhelmed.  There is so much work to be done; challenges of time, finances and the daunting task of helping our community in general understand what FIN is about seem almost insurmountable.  I needed to take a moment or two to understand what God was doing with all of this…and so I turned to my Bible.

Members of FIN Clergy Council: Catherine Monroe, Jack Howell, Michael Panitz, Craig Wansink, Wendy Wilkinson and Michael Daniels

Members of FIN Clergy Council: Assoc. Pastor Catherine Monroe, Pastor Jack Howell, Rabbi Michael Panitz, Pastors Craig Wansink, Wendy Wilkinson and Michael Daniels

I found myself in the book of Nehemiah.  It had been a long time since I had read about Nehemiah’s quest to rebuild the wall around Jerusalem, and I was reminded that it didn’t exactly go so smoothly for him.  Workers got tired and discouraged, and were even threatened by those that opposed building the wall.  Although the challenges of building FIN are obviously very different, Nehemiah’s words jumped out of the page for me: “Don’t be afraid of them, Remember the Lord, who is great and awesome…” Oh yes, my heart agreed, God is both great and He is awesome. Just the other evening, FIN board member Pamela Tanner was talking with a guest at the reception and shared, “What I love about FIN is that it is a God thing…we certainly couldn’t have come this far without God.” I couldn’t agree more.

I also related to Nehemiah’s words in Chapter 4:19-20: “The work is extensive and spread out, and we are widely separated from each other along the wall. Wherever you hear the sound of the trumpet, join us there. Our God will fight for us!”  I immediately related to that idea, and thought that maybe FIN is called to be that trumpet. We go out into our faith communities, many working hard to diligently embrace the work of inclusion of people with disabilities in our congregations, yet we can feel alone in our efforts sometimes.  FIN’s events, whether they be receptions, workshops or conferences, herald the opportunity to come together to learn from, support and encourage one another.  We are stronger together and our God will fight for us and with us!

As FIN moves forward, I ask that you consider three ways to support our efforts and work in the community.  All of them are equally important.

  1. Share. Use our Facebook pages, share emails, tell your acquaintances, friends and co-workers that there is an important effort building in our community; an effort to ensure ALL people are welcomed and accommodated in our faith communities, an effort to ensure that all people have the opportunity to worship and be an active part of our congregations.    https://www.facebook.com/FINhamptonroads/ and https://www.facebook.com/ThatAllMayWorship/
  2. Become a member. Visit the membership page and choose one of our four membership circles. http://www.faithinclusionnetwork.org/memberships/
  3. Pray. As an organization based on faith, we do not underestimate the power of your prayers. Please pray for our efforts to raise awareness, educate and connect our community.

Thank you and hope to see you at our signature event this year, That All May Worship-2017 Pathways to Powerful Inclusion Conference on Friday, March 10 at Church of the Holy Family, VB- https://thatallmayworship-2017.eventbrite.com

 

 

We are ready, how about you?

“What more can I do?
This is the question I dared to pray way back in January 2008. I wanted to know how to respond to the overwhelming compassion I felt for other families going through the same experience we were-families struggling to include their child with a disability into the life of their faith community. Congregations needed to be educated, individuals and families needed to know there was help…and hope.0314162006a
Nine years later and countless conversations, conferences, events and educational opportunities later, my passion for working in the faith and disability field is well developed and I have a new question on my prayer list;

“What more can WE do?

Because this is about community… our community. As members of this community, we need to decide what we believe to be acceptable and in the best interest of all persons, regardless of their perceived abilities or disabilities.

Should people with disabilities be able to access churches, synagogues, mosques and other places of worship in our community? – Yes!

Should individuals affected by disability and their families be able to enjoy and participate in corporate worship?Of course!

Should persons affected by disability get the chance to use their gifts to serve and get the opportunity to develop friendships with others in the congregation? – Absolutely!

If the amount of phone calls and email inquiries FIN has received recently are any indication, our local faith communities are beginning efforts towards better inclusion at a faster rate than ever. Small and large congregations are beginning to ask the questions and seek resources to better understand how to welcome and accommodate everyone.

But there is still much work to do done. Alarmingly, I also get the phone calls from distressed individuals and  parents with discouraging stories to share. Faith communities that did not understand, that excluded, that are not even accessible never mind welcoming.
So the question remains for FIN and for all of our faith communities…
“What more can we do?”

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Today I put the finishing touches on the very first dedicated office space for Faith Inclusion Network. Second Presbyterian Church, already home to our unique Faith and Disability Resource Center, has expanded their generosity and partnership by giving FIN our first public office. It feels like a turning point. FIN is ready to up our game. We want to make an even bigger impact on our community, both locally and nationally. We want to both help local congregations figure out the answer to the question, “What more can we do?” and make Hampton Roads an example for the rest of the country.
We are ready…how about you?

You can contact FIN at http://faithinclusionnetwork@gmail.com to be added to our email list, “Like” our Facebook page at www.facebook.com/FINhamptonroads and check out our website at http://www.faithinclusionnetwork.org Hope to hear from you soon!

Autism Mom Interview #5 Pamela Tanner

april_is_autism_awareness_month_1Pamela Tanner lives in Chesapeake with her husband and beautiful daughter, Raven.  She and I connected right away when we met.  Not only do we have autism in common; raising girls on the spectrum, but we both also have a passion for and professional experience in the field of music.  It did not take long to invite Pamela to be on our FIN board of directors and for us to get involved in a wonderful music project together, the arrangement of performances of “Let’s Share a Journey”.  (But more on that another time!) 

Thank you Pamela, friend, for answering these questions with such honesty and sharing your precious Raven with us!- K. Jackson

Interview with: Pamela Tanner

Position: Sr. Operations Supervisor, Kantar Media and Founder and Director of Raven’s Way Foundation https://www.facebook.com/RavensWayfoundation/

Question: How old was your child when they were diagnosed with autism? Can you share how you felt when you received that diagnosis?
Pamela: Raven’s medical diagnosis was low-tone, speech delay, multiple developmental delays, and epilepsy. No one ever used the word autism, but we knew enough about it to know that she did indeed have autism. How did I feel? Lost, upset, overwhelmed, guilty, frustrated, and afraid. I wondered if there was something that I had done during my pregnancy that caused it. I told myself that my husband and I never should have tried to have another child at 41 and 43, what with all the risk factors. I was afraid that I did not have what it would take to raise a special needs child because I was not the supermom that all the other mothers were. And I was afraid of the future because I just did not know what to expect.
Question: How has living with autism affected your family? 
Pamela: Raven is my husband’s only child, and I have an adult son who is 25 years older than her who lives in Memphis. My husband and I have struggled with the demands and challenges of having a 10 year-old at the ages we are (over 50), and struggle even more with the requirements and demands that are complicated by autism. We struggle to have time together to have a conversation, or watch a movie. We never seem to get enough sleep, and meal time is challenging. Even when we manage some time together, Raven is always in our thoughts and we check on her. My husband seems to look to me to have answers, ideas, and solutions. I used to maintain a home that would rival Martha Stewart; now I feel I have achieved housekeeping nirvana if all the dishes get washed and there is a pile clothes that are actually clean. My mother and two sisters live in the area, so we are blessed with much help and support from them. They make it possible for us to have a child free weekend at least once a month, and take advantage of a spur of the moment date night. My mother is a retired nurse and Navy wife, and she is quick to remind me that God is in control, and to let go of my own plan because His is so much better.Me By Myself
Question: What is currently your biggest challenge as an autism mom?
Pamela: My biggest challenge is communicating effectively with my daughter, so I can help her understand the world, puberty, feelings, and all that girl stuff moms need to address. Many times I cannot determine if a behavior is a product of her having autism, or her personality, or both. Raven has a speech delay, however her verbal communication ability has improved significantly over the last two years. She is a very smart and savvy thinker, and observes everything. She creates a plan to get what she wants, and I stand in awe of her accomplishments, but struggle with “okay that was brilliant, but she cannot live life thinking it was the right thing to do”. From time to time, I mourn that I will not have the typical mother/daughter relationship thing with Raven. We will not get mannies and pedies because Raven hates having anyone touch her feet or hands unless she initiates it. She can’t really give me an opinion on a new hairdo or cool outfit. I try to focus on how blessed we are in other ways, but every now and then I get a little sad.
Question: What is currently your greatest joy as an autism mom?
Pamela: Listening to Raven sing songs. I am a vocalist and my husband is a violinist, so music is life’s blood in our home. Raven loves music, and she dances and sings so joyfully with a big smile on her face. I love to watch and listen to her enjoy something as wonderful and magical as music.
Question: Has autism affected your faith? If yes, how so?
Pamela: Most definitely. My daughter having autism has truly challenged me to take stock of what I say I believe, and then really live it. Every day is a faith walk, and I am believing God for everything, literally. Lamentations 3:22-23 says “The steadfast love of the Lord never ceases, His mercies never come to an end; they are new every morning; great is Your faithfulness”. That is for real. Raven never questions or worries about being cared for, loved, having her needs met, and enjoying her life. I have realized that that is exactly what God wants from me. To trust Him completely and not be afraid. To know that He loves me, and that He has called and equipped me to do all that He wants me to do. To be assured that my hope, my faith, and my salvation is in Him and Him alone. I use to wonder why God chose me to be Raven’s mom. The answer? Because He knew I needed her.
Question:Is there anything else you would like to share about being an autism mom?
Pamela: The fruits of need, commitment, and love combined are amazing. Inspired by our daughter’s passion for life and for music, my husband and I started the Ravens Way Foundation almost two years ago because we wanted to create meaningful opportunities for children and adults impacted by special needs or disabilities to enjoy and participate in music events, concerts, and workshops in their own special way.