Tag Archives: Autism Society

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 # 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 #4 Kathleen D. Bolduc

 

april_is_autism_awareness_month_1One of my favorite things about leading Faith Inclusion Network is the opportunity to meet amazing people from around the country who are writing and presenting about faith and disabilities.  I first encountered Kathleen D. Bolduc through her book, “His Name is Joel”. After reading about some of her experiences with her son Joel, I remember thinking, “I found someone who understands! A spiritual person who wants to raise a child with autism in the faith. I need to talk with her!”

Not too long after reading her book, I did get to meet and talk with her, when she agreed to come present at our FIN That All May Worship-2011 Conference.  Thank you, Kathy for all the wonderful resources you have authored and thank you for participating in this Autism Moms blog series.- K. Jackson

Interview with: Kathleen Deyer Bolduc

Author of The Spiritual Art of Raising Children with Disabilities (Judson Press, 2014), Autism & Alleluias (Judson Press, 2010), A Place Called Acceptance: Ministry with Families of Children with Disabilities (Bridge Resources, 2001), His Name is Joel: Searching for God in a Son’s Disability (Bridge Resources, 1999)

Websitewww.kathleenbolduc.com

FB: http://www.facebook.com/KathleenDeyerBolduc

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

Kathleen: We have three sons. Matthew is the oldest – he was born in 1977. Justin is our second son, born in 1979. Joel was born in 1985, when Matt was in 3rd grade and Justin was in Kindergarten. Believe it or not, we didn’t obtain a diagnosis for autism until Joel was 12! You have to remember, he was born in ’85. Autism was not nearly as prevalent then as it is today. Joel’s first diagnosis was hypotonia, which is low muscle tone. He was a very floppy baby, and was slow to hit all of the physical milestones – rolling over, sitting up, crawling, walking, etc. He was an extremely sociable baby—bright-eyed and engaged with people. It wasn’t until he was two that behavior began to be an issue. He had virtually no attention span, became upset very easily if his routine was disrupted, began to pull people’s hair if they got into his space, etc. His language and play skills were delayed. When Joel was three, we decided to enroll him in a multi-handicapped Kathyphotopreschool. Not that I thought he was “handicapped” (that was the word that was used in the 80’s). I was sure he was just “behind” in his development. He had to be tested to enter preschool. The psychologist sent his report in the mail. I opened it to read the words “moderate mental retardation.” (Again, this is a word that was used in the 80’s). You know what I did? I folded that report up and stuck it in a drawer! There was no way, in my mind, that Joel had mental retardation. Classic denial! It wasn’t until Joel was five that we obtained a multi-factored evaluation from Children’s Hospital in Cincinnati. And yes, Joel had moderate mental retardation as well as PDDNOS—Pervasive Developmental Disabilities Not Otherwise Specified. That’s when the grieving really hit, for both me and my husband, Wally. I think we were stuck in denial for so long because Joel was so beautiful and so sociable. It was the behavior and attention span that were the issues. It wasn’t until Joel was 12 that we obtained a diagnosis of autism. That was after he was expelled from school for aggressive behavior. The grieving came out as depression for me, and anger for my husband. Thankfully, we pursued marriage counseling as well as individual counseling to work through our feelings.

Question: How has living with autism affected your family?

Kathleen: Siblings of children with disabilities definitely get the short end of the stick in a lot of ways. A friend of mine calls them “second bananas.” So often, the child with a disability gets the lion’s share of the attention. I studied disability’s effect on the family system for my master’s degree, and I realized that many of the issues we were facing in our family were common to all families that live with disability. One of our boys began acting out, the other withdrew. It didn’t take us long to figure out that we needed to get some family counseling. That was extremely helpful! The counselor’s office was a safe space for everyone to talk about their feelings. In one session, one of our boys said “I’m tired of the way you treat Joel like royalty!” Ouch! He was right! Joel basically got what he wanted most of the time because we wanted to minimize tantrums. We helped him dress. We helped him eat. We helped him do everything! It’s funny, how once something is verbalized and brought out into the open, it changes everything. We began requiring more of Joel. We started splitting up once in awhile—Wally or I would take Matt and Justin out to do something, while the other parent would stay home with Joel. We made sure Matt and Justin had some on-on-one time with each of us. Wally took the older boys camping quite often, and we remained active in their school and sporting activities.
The other side of the coin is that sibs of children with disabilities often express a great deal of pride in their disabled brother’s or sister’s accomplishments, because they realize the challenges they have overcome every single day. These sibs develop an ability to look past a person’s outer wrappings to discover and admire the person within. When Justin was 9 or 10 he said, “I think God gave Joel to us because he knew we would take extra good care of him.” I think both of my guys are better people for having grown up with Joel. I think they are more compassionate, thoughtful men.51uYoaE2daL._SY344_BO1,204,203,200_

Question: What is currently your biggest challenge as an autism mom?
Kathleen: My biggest challenge at the moment is allowing my son to become a more independent adult. From the beginning, we believed it was important for Joel to live as independent a life as possible as an adult—to live in his own place, outside of the family home. Because Joel loves the outdoors and animals of all kinds, we dreamed for years of him living on a farm. We were overjoyed when we found a group of parents building a farm community for adults with autism in our general vicinity when Joel was in his early 20’s. The farm was ready for move-in when Joel was 25. It took us five years to fully understand that the farm environment was not a good fit for Joel. Although Joel loves being outdoors, 30 acres of land to roam was too stimulating for him, and his anxiety grew over the time he lived there. It was also difficult for him to have three housemates, and all of the staff that number of housemates entailed. The staff turn-over was high, so there were constantly new people coming in and out of the house. That was extremely difficult for Joel. We hired behavioral specialists, worked closely with the administration of the farm, and also with the county board of DD to try and make it work for Joel, but we finally had to admit that this was just not a good fit. Joel needed to be out in the community on a regular basis, living in a house with one or two familiar staff, and fewer housemates.
It was a hard decision, but last year we bought a house for Joel in our own community, and his long-time caregiver of 13 years (who had moved to the farm with him) moved into the house as Joel’s main companion. I have to keep reminding myself that this is two guys living on their own. They don’t need a mom fussing over them all the time! We have been so blessed to see Joel blossom in this environment. He loves shopping for groceries at the local Kroger, going to Walmart for house supplies, helping do dishes, etc. His routine is very stable now. They go to the Miami University Rec Center several days a week to walk the track and swim. He sings with the Miami Best Buddies Friends Choir. Enjoys spending time with his Best Buddie, Grace, and his adopted sister, Sarah. I still tend to think of Joel as a kid—he has a very youthful face, and of course, his cognitive age is very young. But the fact of the matter is, he’s a young man in his thirties, and I have to treat him as such!

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

Kathleen: My greatest joy as an autism mom is to watch Joel worship. He absolutely LOVES the Lord, and our little Vineyard Church gives him to freedom to worship as he likes. Sometimes this means standing right in front of the band, waving his hands in the air as he sings along. Sometimes it means dancing like he’s at a rock concert. Sometimes it means raising one arm in worship, his face glowing as if it’s lit from within. It is a totally awesome sight. There are plenty of Sundays when he can’t sit still at all; when he keeps saying, “Amen! Church is over! Time for lunch!” But the frustration of these weeks are swept away by the times he is visibly caught up in worshiping Father, Son, and Holy Spirit!

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

Kathleen: Everything I valued in my life before Joel’s birth had to be re-thought and re-valued. – the value of intelligence, efficiency, logic, self-control. The old rules no longer applied, and my spirit, which craves peace, order, comfort, and security, withered as I struggled to make sense of the seemingly senseless…a beautiful boy with a damaged brain.
But the life-giving waters began to flow as I caught fleeting glimpses of reasons to rejoice in the midst of it all. Joel’s infectious grin, his silly jokes, his compassion for people who were hurting, his spontaneity and unconditional love. I had long struggled to fit prayer and meditation into my busy daily routine. Suddenly it was no longer a struggle. I simply made the time because the waters that welled up in the silence filled all my empty places to over-flowing. I couldn’t do without it! So, even though there was a lot of adjusting on my part, Joel blessed me beyond my wildest imaginings!

51YDFSQMbyL._AC_UL320_SR208,320_I often say that Joel has been one of the most important and influential spiritual teachers of my life. I don’t believe that God causes disability in order to teach us compassion or to bring us closer to God. However, I do believe that God walks through disability with us—I believe He draws very close to us as we walk this road. I believe that all things work for good for those who love God. I believe that God’s power is made perfect in our weakness. Because of Joel, because of autism, because of the road I have walked these past 31 years, I have come to know God on a first-name basis. I have learned to depend on Him for everything, and to trust that He is working through every situation in my life as well as in Joel’s life and the life of my family as a whole.