Tag Archives: community

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.

 

    

  

 

 

 

The Avenue of Miracles

I don’t know if you believe in miracles or not, but this is the story of two kinds; one miracle of physical  healing for my daughter Samantha and the other, an amazing community response that felt as much like a miracle as my daughter’s actual healing experience.  I share this story out of deep gratitude for all the people of faith that I consider my friends. I give glory to our amazing God, who loves each and everyone one of us and listens and responds to our pleas in times of crisis.  I am thankful for the many circles of friends and acquaintances who responded with prayers, love, kindness and practical help when we needed it most.

 

 

The Avenue of Miracles

Samantha, my 19 year old daughter who has autism, had been breathing very loudly as of late and no one could really figure out why. I was convinced she had some kind of asthma, although the pediatrician didn’t seem concerned. But late one Sunday afternoon, her breathing became more labored than usual so my husband and I agreed to call the doctor’s office. The nurse heard my concerns and encouraged us to go to our local Children’s hospital ER so off we went.   Although we were thankfully sent right through without much of a wait, the long process began of trying to diagnose Samantha’s breathing problem.  By 11:00 pm, the ENT on call was worried about her declining condition and scheduled her for emergency surgery. He planned to insert a camera down her throat to determine what, if anything, was blocking her airway.

Tracheal Stenosis narrowing Samantha’s airway

At approximately 1:30 am, Dr. Reeves found us in the eerily quiet waiting room and explained what he found. Samantha’s airway was blocked by a tracheal stenosis that left an incredibly narrow airway. He had pushed back the scar tissue as best as he could and inserted a breathing tube. They would now treat with steroids and wait.   Having never been in the PICU, my husband and I were overwhelmed with concern and probably in shock. We left Samantha at 3:00 am, barely able to comprehend that our little girl lay motionless, with tubes everywhere and a machine breathing for her.   We went home for a few hours’ sleep (we are lucky to live within minutes of the hospital).

 

I arrived early the next morning to hear the doctors during rounds. The news was basically “wait and see”. We now knew she also had tested positive for two viruses and her lungs were somewhat compromised.   Friends began calling and texting, eager for news and to help. I posted on my Facebook page and sent an urgent request for prayer to family and friends by email. I was exhausted though and at a loss as to what more I could do.

 

CHKD-Children’s Hospital of the King’s Daughters, Norfolk, VA

It hit me early the next morning that the absolute most important thing I could do was pray. Well, I knew lots of people who could help with that! So I began to put a plan together. I sent out an invitation for friends to come to the small hospital chapel at CHKD to pray at a designated time. Many people on Facebook, not able to make it to the hospital, shared that they too would be praying at 3:00 pm on Tuesday.   Knowing quite a few clergy in the area, I asked several to come to the hospital as well. Our designated approved visitors list, which only allowed for 10 guests and one clergy, grew as Pastor Craig Wansink, Pastor Jack Howell and Deacon Derek Turrietta all made trips to the hospital.  The nurses seemed a bit confused (and I think they may have thought I was trying to game the system) but let them all in anyway.

 

On Tuesday at 3:00 pm, Samantha still lay motionless, now with a chest tube because one of her lungs had collapsed in the night.  My friends, Elizabeth, Rebecca, Karen, and Susan surrounded me with love as I let them pray the words I could not manage to speak aloud. We prayed for complete healing, for a clear airway, for Samantha’s comfort and protective calmness as she awoke out of sedation after the procedure scheduled for Thursday. I cried and cried, yet felt peace as my friends lifted Samantha up in prayer.

 

And then we waited some more.

 

Thursday afternoon finally came and Samantha was briskly wheeled back into the OR. Dr. Reeves told us he would attempt to push back the scar tissue some more and get a biopsy, as we still had no idea why the stenosis had formed in the first place. We settled in to wait the expected hour or more in the PICU waiting room.   Less than 30 minutes later, the doctor found us. Somewhat surprised he was back so soon, Dr. Reeves began his report.  All the news was good, he proclaimed.  In fact, he explained that he had gone back in with the camera and found nothing. He proceeded to show us the picture of Samantha’s completely cleared trachea. “There was nothing there to biopsy”, he continued, “and I see no reason to have to repeat the procedure in the future”, as he had cautioned us about the very first night. Through tears, I listened to him finish by saying he had never seen anything like this and no idea how the stenosis had completely, “resolved”, yet the picture was proof that Samantha had an absolutely unobstructed airway.

 

Of course, I knew immediately how it happened- the power of prayer. Hundreds of family and friends prayed on Samantha’s behalf, a whole community behind us… and the result? Our own miracle for our precious daughter Samantha.

 

The road to recovery has been slower than we expected. Coming off the heavy medication was difficult but she is improving every day.  Samantha was also diagnosed with Type 2 diabetes in the hospital and we are trying to manage this new medical challenge.

Today I am overwhelmed with a life-changing gratitude. As I continue to process the experience, I am immensely thankful for the help and responses of my many circles of friends during this crisis. My neighbors and close girlfriends made sure my house was clean and food in the refrigerator at home the whole seven days we were in the hospital, other friends brought meals to me in the waiting room and friends from my school who are employees of the hospital checked in religiously.  Still others took over the many details of the upcoming FIN National Faith and Disability Leaders Retreat and That All May Worship Conference, taking care of last minute preparations and ensuring all the events would proceed as planned, whether or not we were out of the hospital.   But most of all, the prayers and Facebook comments of those near and far sustained me, leading to what I accept as a healing miracle for Samantha. My community embraced us like never before, an example of how very important and powerful relationships and community support can be. As Director of Faith Inclusion Network, I have always believed in the importance of a strong faith community and making it available to everyone. As the mom to a child who was critically ill and healed through faith, I have a new and more personal definition. Because now, I clearly see community as God’s gift to us, a way in which He sometimes chooses to bless us with his power here on earth. Community, therefore, is many things, but for us, it was the avenue of miracles.   Glory to you O Lord. Amen.

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!

A Place at the Table by Dianna Swenson

To know Dianna is truly to love her.  I am pretty sure anyone else who knows Dianna Swenson would agree.  She is a talented musician, passionate advocate, person of strong faith and mom to two sweet children, one of which has a disability with complex medical issues.  When she expressed an interest in writing down some thoughts on faith inclusion, I asked for her to send me whatever she had to share.  

Thank you for your story Dianna and we hope you keep writing, singing, praying and advocating! -K. Jackson

10648421_10152756689417948_9089216279735895491_oYesterday I was in another church, an enormous church, a gorgeous church. A church that I was told was welcoming to all abilities, and they are, the people are, but the building isn’t.

In America, we have what is called the ADA, Americans with disabilities act and it requires by law for buildings to be accessible, and for a certain amount of accessible parking for the vehicles required for wheelchair users. Churches, do not have to abide by the ADA, they are exempt, so in many ways, we realize that Christ came to free us all from the law, that we are to obey the laws of the government, but at the same time Jesus has set us free from being held to the laws of man.

Ok, well, fast forward to having to try to get your friends and students who need wheelchairs to get around up a platform to sing and give glory to God. This happens at my own beloved church, a church that I love. A church that has not yet found a way to allow ALL on the platform, which could potentially keep some out of ministry, because they can not make it up on the platform to serve.

I am aware that this is not what Jesus would have wanted. He came so that we can all have life and have it to the full. Abundantly. We still live in a fallen world, a world where it takes funds and money to make things happen like making churches accessible and it may need to go up before a board who may not like the way it “looks” in the sanctuary.

I am continually aware of places I can not bring my own child because he is in a chair. I am increasingly aware of the fact that many stay home from church because it is too hard to get out on a Sunday morning.

I don’t have all the answers, but I do know that no matter how positive a thinker you are, you can’t make a staircase an accessible ramp just by wishing for it. So, I instead and lifting up a prayer, and asking those who feel moved to join me, in praying that more churches will become accessible, to all, for all ministries to be open to those in wheelchairs.

Until it happens, that’s what I have, is faith and prayers. David invited Mephiboseth to his table, he was lame in both feet according to the word. What if the table is on a platform these days? How can we invite all to the table?

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Courage

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Katie’s daughter June Ivy

I have a friend who is, like myself, the mom of a child who has autism. Katie is funny, loving, a bit younger than me and I realized today, much braver than I.
Katie Moorman and I have known each other for many years. We met through the group Living in Holland, a Christian support group for moms raising children with special needs. Although 10 years plus difference in age, with children at very different stages, we have developed a close relationship through a shared interest in writing, strong faith and an of course, being moms to children on the spectrum.
My involvement with both FIN and Living in Holland has given me the opportunity to walk alongside many other parents raising children with disabilities. There may be nothing I have done in ministry more important than listening and praying with these moms and dads, people who share a similar parenting journey. Just like anything else in life, it is difficult to truly understand another’s experience until you have “walked in their shoes”. The shoes, I have found, are at times painful, uncomfortable, more than anyone can or should have to bare.
But I and thousands of other parents of children with severe disabilities choose to don those shoes every day and courageously rise to the challenges of care-giving.
At times, the shoes are pretty comfortable; there are many moments of joy in my life as a mom. When I witness all my children interacting in a loving way, watch my daughter learn a new skill, or participate in normal family outings with no major behaviors-these are great experiences and moments I treasure.
Today however, I read a post from my friend and blogger, Katie and I remembered that all too often, our shoes are different than most, and they can sometimes be almost unbearable. Katie’s daughter June is turning 7 years old. She has various disabilities, including autism. For years Katie has been challenged by June’s behavior of smearing feces all over the house and all over herself.
I have not lived through this particular kind of behavior, but it is not difficult to imagine how challenging this would be. Through our LIH group meetings and private conversations with Katie, I have gotten a glimpse of how hard dealing with this kind of behavior has been on her and the whole family. But especially on Katie as the primary caregiver.
When I saw Katie’s story today http://ivajune.blogspot.com/2016/06/birthday-present-kryptonite-body-suit.html with a picture of her beautiful 7 year old daughter covered in feces, my heart just about stopped. I read the poignant blog post and then sat amazed that she could post the picture and the story. But it is the truth. It is reality and parents deal with things like smeared feces every day.
So what does any of this have to do with you, your faith community, your ministry, your life? Why should it matter that this mom decided to show you the truth about a challenging behavior- one that only us special needs moms may have even heard of but most, including myself, would not be brave enough to share publicly?
It matters because we are people of God, we are called to love and support each other. The need for understanding, support and encouragement in the disability community is great. Some of our Hampton Roads faith communities have started respite programs, others support groups. Still others have begun to reach out to families of children with disabilities to help with child care so that the parents can go to worship together.
What can you do? What can your faith community do to support families that walk a challenging parenting road or who are truly in crisis?
Contact us if you would like more information or have an idea to share. And pray. Please pray.
Karen Jackson-http://faithinclusionnetwork@gmail.com

#SITD2016-A personal story about the Summer Institute on Theology and Disability

 

I arrived at the Grand Rapids airport at 10:30 pm on Sunday evening somewhat anxious and already quite exhausted. I still needed to connect with someone I didn’t know, rent a car and drive us to Holland, MI, a 40 minute ride to the Summer Institute on Theology and Disability at Hope College. A few days before the trip, my daughter needed unexpected minor surgery. This meant an overnight stay in the hospital amidst much worrying and prayers, not to mention a quick rearranging of schedules. Let’s just say, I was not in a good mental or physical state upon my late arrival in Michigan.
That all began to change, however, the moment I spotted my friend, Shelly Christensen1039at the airport. Shelly, who is from Minnesota and is a personal friend, FaceBook friend and National Adviser for the FIN Board of Directors, gave me a big hug, exclaimed “Karen!” and then immediately asked, “How is Samantha?” I don’t know which made me feel better; seeing a friendly face after a long day or her concern over my daughter (she knew about hospitalization from FB) and how I was handling it all.  Well, yes I do. The support from a fellow special needs mom and disability advocate was an incredible encouragement. Shelly decided to come with me so we found our new friend Janine and headed to Holland.
The fun continued when once at the college, Shelly couldn’t get into her room. We decided it would be easiest for her to bunk with me for the night and at 2:00 am we turned out the lights and said good night.
By 7:30 am I was headed to breakfast, but not before I discovered that another good friend, this one a wonderful author and speaker, Jolene Philo was my suite partner. “Hi Jolene!” Shelly and I exclaimed at the bathroom door. More hugs and smiles.
We all headed down to breakfast and enjoyed reunions with more friends. David Morstad and Erik Carter were also attending SITD. The chance to talk with all three of these national FIN board advisors at the same time would come a little later in the day, but for now, hugs and a chance to catch up on personal lives was so much more important and meaningful.

Erik Carter, Shelly Christensen and David Morstad, FIN Board Advisers, with Karen Jackson, FIN Executive Director

Erik Carter, Shelly Christensen and David Morstad, FIN Board Advisers, with Karen Jackson, FIN Executive Director

Monday and Tuesday’s presentation were just amazing. How often does one get to hear from people like Erik Carter, Bill Gaventa, Hans Reinders, Tom Reynolds, Darla Schumm, John Swinton, Todd Billings, Tom Boogaart, Ben Conner and Randy Smit all in the course of a few days? “Yes, yes, yes”, I thought, over and over again. These people were here in Holland to share their knowledge and their passion and I felt so grateful for the chance to be a part of the whole conference.
By Monday night I had no business going out after dinner in my overly tired state, but who could resist the chance to hang out with the girls? New friends and old, the pub called and we stayed out late, just like college students (and we are all past college age, I assure you!) So much fun after a full day.
As we meandered back to our dorm, Shelly and I spotted a new arrival. “Jeff!!!!!! We screamed, greeting our friend Jeff McNair who had just arrived from California. Jeff accepted this overly zealous greeting with his usual humble attitude. “The girls always greet me like this!” he bragged with a smile. Another few minutes and I finally gave in and headed to my room. Time to prepare for the next day.
Tuesday was my opportunity to share by leading the opening worship time and then later presenting about FIN in a break out session. Although I felt both went well, the experience of leading the Morning Prayer and Meditation time was extremely meaningful for me. 20160524_084112_001Performing music at the Institute provided a chance to fuse my passions for music and disability work as well as experience another wonderful chance to bring others together, this time in song.
At one point, when leading the singing of the song “Let’s Share a Journey”, a song that intends to capture the importance of faith and community, I was almost started crying. To hear the 100 or so members of the audience singing “Let’s share a journey, the way it should be, let’s share a journey, you and me…” together was incredibly moving. I knew those lyrics and melody were given to me by our great and wonderful God-not my words at all but a gift to share. This will always be a treasured memory.


More amazing presentations and opportunities for fellowship filled the rest of the day. After the Tuesday afternoon prayer service, Anne Masters, another FIN friend who is from New Jersey, invited me out for a stout. 20160524_175852By the time we made our way to the Holland Brewery, we had a nice little group together. The night continued in much the same way, meeting up with people and making connections and starting friendships that will continue, I hope, for years to come. 20160524_175841

5:00 am came quite early on Wednesday. I was fortunate to have Jolene along on the ride to the airport. We chatted like old friends and parted quickly at the airport, both of us in a hurry to catch our flights. My trip back to Norfolk was fairly short and uneventful. I was glad to head back home and see my family.

Conferences are always fun; the combination of learning and engaging with others is an important part of many people’s development in their chosen fields. I went to the Institute expecting to hear from some great teachers and speakers, to see friends and meet new people who are also passionate as I am about faith and disabilities inclusion. What I didn’t expect was to experience an unparalleled camaraderie, moment upon moment of meaningful discussions, hilarious stories and the love and encouragement of friends that are doing incredible work across the country. Thank you to Bill Gaventa, Ben Connor and others who put together the year’s Institute. And a special blessing to all who attended #SITD2016-may your work in faith communities around the country and the world be fruitful and filled with joy. Hope to see you again soon!

See our FIN FB page for a full album of photos at https://www.facebook.com/FINhamptonroads/

Autism Moms Interview #7 Angela Kahler

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I met Angela Kahler at our first Gifts of the Heart event in 2012.  We connected as autism moms and fellow Catholics immediately and I knew she and we would become good friends. (Which we have!)

A bundle of energy. Angela is extremely involved in the community.  She was on the FIN Board of Directors for 4 years and is still very active with FIN events.  She is also a Disability Advocate at her church, Church of the Ascension in Virginia Beach and the Treasurer of the Virginia Beach Special Educational PTSA.  

Thank you for your friendship, Angela, and all you do for your family and the disability community.

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

Angela: Joe was pretty young. He was 23 months old when he was diagnosed. I grieved the loss of the life I wished and planned for for my son. I was devastated. Since then, I have realized what I wanted for my son was a happy life- Joe has always been happy. We are blessed. Different things make him happy (and plenty of the same things- love and affection.). I worried, will he marry- the truth is I think he will find happiness in non-typical ways. 

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Question: How has living with autism affected your family?

Angela: We are much more aware of autism of course, but also all other differences, i.e development, abilities, etc. Even my extended family is focused on not just supporting Joe but kids and adults with differences.

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

Angela: Joe has been in speech therapy, OT and ABA (off and on) since he was 2. He is now 11. We have been on a fast paced schedule with little rest for that many years. I worry about not doing enough to help him reach his potential but I also worry about us having enough time to just enjoy life.

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

Angela: I have embraced the truth that children with autism are children first. Joe and I have been spending a lot of time just doing typical mom/son things- watching movies, reading, laughing. As a family, we have been enjoying more of these regular joys.

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

Angela: I clung to my faith when Joe was diagnosed. Very well meaning friends asked me if there was something I was doing that was preventing Joe from being “healed”. I am Catholic. As I often do when looking for answers to important and hard questions, I turned to my faith and the Bible- and the story- was it the sin of the blind man or his parents that caused him to be blind? Neither this man nor his parents sinned- this happened so that the works of God might be displayed in him. I also think differently about autism now then I did when Joe was first diagnosed. Joe’s autism is a difference but it does not define him. I have had to do a lot of soul searching. Admittedly, when Joe was first diagnosed- I thought autism was a tragedy, almost a death sentence for people with autism and their families- please forgive me, I didn’t know. It is a difference. It is part of my son. He is a blessing, gifted and talented as God made him. He also brings out the best in others. He is something special. His smile is contagious. My brother went to church with us and I was praying for Joe to make it through without being too loud- Joe danced to the music, laughed, smiled and enjoyed church- my brother remarked- he was a blessing to everyone around us at church. Prayers answered. Lesson learned- have faith.

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

Angela: To my 39 year old self- I would say, try to relax- 9 years from now Joe will be a sweet, adorable, happy kid. You will have advised many moms how to get their kids the help they need, find therapy and doctors and you will look them right in the eye and tell them this will all work out. You will have been supported by smart, loving compassionate people- you are not alone. I also wish my 60 year old self could tell me something now- I am very hopeful for the future. I can tell Joe still has a lot to teach me.
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