Tag Archives: Autism Awareness

“Julia” and Autism Awareness and Acceptance Month

When you are part of a family who has a member with Autism, the month of April is going to mean something to you. You may be the person who embraces Autism Awareness and Acceptance month, sharing everything on Facebook that you see or maybe you have an opposite reaction and can’t help but feel a bit weary of the need to constantly promote awareness. 

But whether you have strong feelings one way or the other or are ambivalent about the whole idea, the world (yes, the entire world) has embraced April as Autism Awareness and Acceptance Month and I believe it is here to stay.

With that in mind, I began a very intentional Facebook campaign in April on our Faith Inclusion Network Facebook page. My goal was to take 30 separate photos of individuals, families, businesses, faith communities and other organization representatives that are involved with FIN and somehow, either directly or indirectly, support individuals affected by autism. My ambitious goal was to post every day throughout April.  What I needed, however, was something fun to add in the mix.

“Julia” at taping of interview with Eggleston Services on WNIS 790

That is where “Julia” came in. Julia is the fairly new Muppet on Sesame Street that has Autism. The introduction of this character was highly praised by most of the Autism community a few years ago. I was thrilled when I learned about her, not only because I appreciated that Sesame Street was including a friend that has Autism,  but because Julia is a girl, and there are not as many girls on the Spectrum as boys.

So, I began my quest, emailing and seeking out FIN friends willing to pose

Karen Jackson and daughter Samantha

with Julia. She lived in the car with me and for weeks we traveled around the area to synagogues, churches, homes and businesses, posing inside, outside or wherever it worked. I joked with friends that I really didn’t realize how time-intensive this project would be but I  enjoyed the whole experience immensely.

There were several surprises that made my quest with Julia so joyful and positive. The first was that everyone, and I mean everyone, adored this little toy character. Julia somehow brought a huge smile to everyone’s face immediately, adult or child, big or little, even if people didn’t know who she was at first, they seemed to love her right away.

The second surprise was the encouragement I received from everyone who I was able to photograph. A hug, a few kind words, it all energized me and made me feel very grateful to be a part of this community. In fact today, I took the photo of Rabbi Panitz at Temple Israel, which was a particularly adorable picture with him posing with Julia and a toy Torah. We didn’t have much time as we both had to get to other places, but his words right before I left; “I’m so glad that we’re friends”, are still

Rabbi Michael Panitz of Temple Israel, Norfolk

reverberating in my mind, a reminder that I have made some long-lasting and important relationships in my work with FIN.

As I look back over all of the photos of FIN friends and supporters, I am struck by another and maybe the most important aspect of this little Facebook project. Inclusion is not only relevant in our society today; inclusion is absolutely vital to making our communities the best they can be. Julia strikes a happy chord with so many, I believe, because she serves as a reminder of simple childhood joy and the acceptance of all people, regardless of disability, diagnosis or any other “difference” that makes them stand out. We want the “Julias” of our community to be well-known and well-loved, and I believe there is a lot of love and support out there. But I am not naive. I also realize that not everyone has positive inclusive experiences, whether in faith communities or any other places they venture to go. That is the work that FIN and other organizations in our community undertake every day.  Until everyone in our communities feels loved and included, we will keep working.  

Many thanks to Julia, Sesame Street and all those who took a few moments out of their day to smile with me. Keep up the good work!

Blessings,

Karen Jackson

 

 

 

 

The Parking Lot

I was excited when Virginia Pilot journalist Denise Watson replied to my email about doing a story on Faith Inclusion Network and our upcoming Gifts of the Heart Gala.  I always love to share about FIN and the work we do. After Denise and I talked on the phone, we decided to meet up at my church, Blessed Sacrament Catholic in Norfolk, VA one weekend before Mass to have a picture taken of my daughter Samantha participating at church, a shining example of inclusion as a person severely affected by autism but very much part of our church family.

I knew our Pastor, Fr. Joe Metzger would be fine with the plan, he has always been supportive of our efforts to include Samantha and the various cameras and reporters in the past coming in to film or take photos.  I should have known it would not be that easy this time around though.  Samantha’s anxiety, built up over the last few weeks for what is as of yet undetermined causes, kicked into high gear and she refused to get out of our van when we got to the church parking lot.

Samantha with Fr. Joe, Pastor at Blessed Sacrament Catholic Church in June, 2017

“Really Samantha?” I thought, “Here we are, trying to share about our wonderful inclusion experience and you won’t even get out of the car!” I dashed inside the church to tell Fr. Joe that Samantha was super stressed and not willing to come inside the church building.  He followed me outside to talk with her himself.  Samantha absolutely adores Fr. Joe so I thought he might convince her to get out of the van.

There in the parking lot we all gathered around Samantha.  Denise, the journalist and Bill, the photographer, could not have been nicer or more understanding. While Denise and I chatted, Bill snapped a few photos of Fr. Joe talking through the window to Samantha.

It wasn’t until the next day that I could organize my thoughts over this whole experience. On the one hand, I was sad and disappointed.  In addition to being worried about what is wrong with Samantha, I felt frustrated. We have worked so hard to get Samantha comfortable at church over the years and it has seemed to pay off. We generally sit together as a family in the sanctuary now and she is usually relaxed and happy, often wanting to linger after Mass. Her current behavior is unusual and a mystery. It is hard on all of us when we do not know what is wrong.

But another part of me realized that I was also very grateful.  I appreciate the people who meet us where we are, even if it is in the church parking lot.  And isn’t that what we really need to do when it comes to our families affected by disability? We need to meet them wherever they are, give support and encouragement through the challenges and let them know that they are not forgotten, even if unusual circumstances make attending church difficult or impossible.

So today I choose to be grateful. I am thankful for all those who love and support Samantha and our family, especially those connected through our church family.

I am sure Samantha will get through this period and we will be back in the pews soon. For now, I pray that this experience is used to touch someone else and be a reminder that sometimes, when you can’t go to church, church has to come to you, even if that is in the parking lot.

Amen.

Karen and Samantha Jackson

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.