Tag Archives: ASD

All Are Welcome

“All Are Welcome” is a well-known and well-loved Christian hymn written by prolific liturgical composer, Marty Haugen. I’ve sung it often as a member of the congregation and even led it as a cantor on a few occasions, but never did the song impact me in the way it did this past Sunday when visiting St. John Chrysostom in Wallingford, PA.

This was not my first visit to St. John Chrysostom. I wrote a piece several years ago, called “Welcoming the Visitor”. My family and I had attended a Mass at the church at Eastertime while visiting our oldest son at Swarthmore College. I was so overwhelmed with their intentional inclusion, I wrote a story and connected with the pastor, Fr. Hallinan by email.

More than a year after my son has graduated from Swarthmore, I found myself preparing to bring our youngest son to the school for an official visit on campus. I happily anticipated an opportunity to attend church once again at St. John Chrysostom…I was not disappointed.

The moment I walked in, about ten minutes before the start of Mass, I observed several people with various kinds of disabilities. Ushers and members of the congregation greeted everyone in a kind and gentle way, expressing their joy to see them. One young adult, who seemed to be non-verbal, shook hands very enthusiastically with the greeter, a huge smile on his face. It was obvious to me that he was a valued member of the congregation and everyone he encountered was as glad to see him as he was to see them.

A few more steps into the church and I noticed some signage; one an announcement about a Caregivers Support Group and another about an Autism help line. These notices were not buried among many on a full bulletin board, but prominently displayed and easy to read.

I finally found a seat in the pew and listened to the choir warm up (a folk group with guitars, bongos and several singers.)  Of the six vocalists, the soloist chosen to lead a prominent part of one of the songs was an elderly woman with an exceptionally quiet voice. She was singing in tune, but it struck me as particularly refreshing that she was the one chosen for the solo. Not the strongest or the youngest voice, but an important voice and another obvious way that this church embraces the gifts of every person.

I could go on but you probably get the idea. St. John Chrysostom is a vibrant congregation with a strong understanding of what it takes to be inclusive.

I waited a few minutes at the end of Mass so I could re-introduce myself to Fr. Hallinan and hopefully get a few minutes to talk. We ended up chatting for more than ten minutes about our shared passion for inclusion and concluded our time together with a photo (thank you for that, Fr. Hallinan!). I expressed how grateful I was for all that this church does to promote inclusion and headed out the door.

As I got back in my car to head back to the campus baseball field, one of the points from my conversation with Fr. Hallinan that resonated strongly with me kept running through my mind.  St. John Chrysostom, like many other faith communities around the country, holds a designated service especially for individuals and families affected by disability. The “Mass of Welcoming and Inclusion”, as it is called at St. John Chrysostom is celebrated the 1st Sunday of the month. (The Mass I attended, by the way, was not on the 1st Sunday of the month, it was a regular Mass without this distinction) Fr. Hallinan said that his goal is that eventually they would not need to have the Welcoming and Inclusion Mass, that all Masses would feel welcoming and inclusive! We both agreed that an inclusive service can really be a helpful stepping stone for congregations and is still important for some individual and families affected by disability.  I couldn’t help but think, however, as I left the church, that if any congregation was nearing the goal of letting go of this kind of stepping stone, it was this church.

“All Are Welcome” at St. John Chrysostom, that is for sure in both obvious and subtle ways. I am grateful for their efforts and appreciate the opportunity to be an occasional visitor. I also know that there are many Hampton Roads local faith communities doing equally awesome inclusion work and seeing great results. If you aren’t already connected with FIN, please do share with us what you are doing. Your efforts could really be an encouragement to someone else or another faith community.

God Bless.

Karen j.

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 #5

 

I “met” Dave a few years ago by phone and was struck by the similarities of our parenting experience, having daughters very close in age.  My family is also Catholic and has worked hard to include our daughter into the life of our local parish and teach her about the Catholic faith. After talking with Dave, I once again realized how important connecting with other parents can be, even if they are in another part of the country.  If you would like to keep up with Dave and his beautiful daughter, Danielle, take a look at their Facebook page, Autism with the Rizzos at https://www.facebook.com/Autism-With-The-Rizzos-281489198616138/

Also, I highly recommend  David’s book,  Faith, Family and Children with Special Needs; Spiritually Able http://www.loyolapress.com/products/books/family-life-and-parenting/faith-family-and-children-with-special-needs and the The Adaptive First Eucharist Preparation Kit https://www.loyolapress.com/products/special-needs/adaptive-learning/adaptive-first-eucharist-preparation-kit , which he helped develop. Both of these are wonderful resources for helping to teach the Catholic faith to persons who have autism.

Interview #5 Dave Rizzo

 

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

Dave: Danielle was four years old when she was diagnosed with autism.  My wife and I knew something was up before this and we feared it was autism, but the formal diagnosis from a doctor didn’t come till Danielle was four.  The diagnostic process seemed endless. There were surveys we had to fill out, early intervention sessions, meetings with doctors and therapists.  When the formal diagnosis did come I felt a combination of intense dread and sadness, coupled with relief that at last I knew for sure what was going on with my daughter. The sadness came from the realization that the life I had imagined for her up to this point would not be the life she would lead, things like that I would never walk her down the aisle at her wedding, or that she would not go to college or lead an independent life. 

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

Dave: It affected my family in a big way.  Raising a child with autism leads to a fundamental shift in family dynamics.  We had to arrange our family life around keeping Danielle safe, providing therapies, helping her with everything.  We had to give most of our time to Danielle and this sometimes meant not giving equal time to our three other children. I felt very isolated in those early years.  It took a while for us all to learn how we could be a family of a child with autism and balance all the competing demands.  Eventually we learned how to do this better.

 QuestionWhat is currently your biggest challenge as an autism dad?

Dave: We just went through the process of attaining guardianship for Danielle, who turned 18 last autumn.  It was very difficult hearing her declared a mentally incapacitated individual.  We don’t think of her that way.  We think of all the marvelous things she has learned to do, all her accomplishments, the way she has brought joy into our lives and in the lives of others.  It’s also still a challenge to see other children her age meeting milestones and typical rites of passage like learning how to drive.

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

Dave: Seeing how Danielle has grown into a fun loving person, who continues to spread joy to those she meets.  For me, I experience a special joy when I see Danielle at Mass participating with reverence, folding her hands in prayer, reaching out during the sign of peace, kneeling in prayer after receiving holy communion. 

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

Dave: Having a child with autism forced me to grapple with my faith and turn toward God in prayer and sacrament.  My faith became much more visual and experiential, as I tried to connect with both God and my daughter.  I have learned that the life I imagined was not exactly the life God had in store for me.  But I am trying to discover in my life that the action of God is unfolding the way it should, that the life God has in store for me and my family is a good life.

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

Dave: Yes.  I want people to know that it is a life changing experience, and a roller coaster of a ride.  As the father of a now young adult with autism I have learned to look at the world a little differently.  I make a lot of mistakes along the way, and it is often very hard. However, mostly things are good.  There is happiness, humor, sadness, exasperation, compassion, love, and all the emotions you can possibly imagine, but life is about all of these feelings, and always has been. 

 

 

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.

 

    

  

 

 

 

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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