Category Archives: Family

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.

 

The Avenue of Miracles

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

 

 

The Avenue of Miracles

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

Tracheal Stenosis narrowing Samantha’s airway

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

 

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

 

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

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

 

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

 

And then we waited some more.

 

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

 

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

 

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

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

A (Tough) Day in the Life

20160324_190829 This summer, I witnessed my beautiful 18 year old daughter completely lose control, her anxiety escalating to the point she was laying on the sidewalk outside her day support building, banging the back of her head on the cement.  I was helpless, not strong enough to keep her from hurting herself, too distraught to pray.

When she was finally inside our van, the violent episode continued.  I had no other option than to drive directly to the ER.  I prayed the whole way there that she would not get the car door open or hurt me while I was driving and cause an accident.

Even through the whole distressing episode, I realized we had amazing support. Samantha’s dad came as fast as he could from work, her caregiver came to the hospital for back up support. The staff at the hospital were both professional and compassionate.  I did not try to park but pulled up in front of the ER doors and asked for help.  There were at least one attending nurse with us at all times.  Samantha’s neurologist came from another location to check on her and help us come up with a new med plan.  The social worker made sure I left with numbers and places for crisis support. IMG_0575

This was one day in our life…admittedly a tough one.  Although this was the most distressing and traumatic we have experienced in a while, the underlying stress continues as we try to figure out how to help her and also keep everything else (work, school, family time, ministry) going.

As I think back to that difficult day this past summer, I find myself asking, “How do other people cope?” I posted a quick picture of Samantha and her neurologist on Facebook the evening after that difficult day.  We were immediately flooded with comments and support.  I am blessed. We have an entire community that cares.  Yet I am still feeling the affects of the traumatic experience and some days, I am barely able to hold it together.

And it gets me thinking…what do people do in this situation that do not have this kind of wonderful medical care and supports?  What can we do to keep caregivers from getting to the breaking point, before they are in a crisis?  What are we as a community going to do about this?

There are many people in our community that are caregivers.  Some may care for children (young or adults) with disabilities, others may be caring for elderly parents or a spouse with a disability.  Whatever the situation, these caregivers need many different kinds of support, from friends and family, to professionals. Often, they are people who do not even show outward signs of struggling but are none-the-less hoping for encouragement and a bit of help.  Faith communities and our area’s congregations may be one answer to providing that encouragement and help.

If you would like to learn more, please join us on September 29 when Faith Inclusion Network, in partnership with the Alzheimer’s Association of Southeastern Virginia, is holding an event to discuss the ways in which faith communities can and do play a role in supporting caregivers.

You can register for this free event called, Caring for the Caregiver at https://caring forcaregiver.eventbrite.com

And thank you to all of our families’ supporters; friends, acquaintances and professionals. I know I couldn’t do it without you!

caring for caregiver

 

A Place at the Table by Dianna Swenson

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

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

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

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

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

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

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

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

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

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Courage

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Katie’s daughter June Ivy

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

Interview #8 Shelly Christensen

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I initially “met” Shelly on the phone, when I called with some questions related to the inclusion of people with disabilities into Jewish communities.  She was incredibly generous with her time and, some 40 minutes later, I felt like I had a new friend in Minnesota.  Not long afterward, we got the chance to meet in person at an AAIDD conference and now we talk frequently since she is a Faith Inclusion Network National Board Adviser.  

Shelly has a lot of experience as a faith and disability advocate, traveling across the country to speak and be involved in many large Jewish and interfaith initiatives.  But what I appreciate personally about Shelly is her gift of encouragement.  I always come away from our conversations feeling wonderful!  Thank you for that beautiful gift and for all you continue to do to further the national faith and disability movement, Shelly.

Interview with: Shelly Christensen, MA, FAAIDD
Founder and CEO, Inclusion Innovations
Author,  Jewish Community Guide to Inclusion of People with Disabilities Website: http://www.inclusioninnovations.com

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

Shelly: Until Jake started Kindergarten we thought that he was our adorable quirky kid. Whether he was telling an inebriated customer in my Dad’s bar to settle down or his grandpa would throw him out, or declaring that “Gone With the Wind” was his favorite book when he was preschool Student of the Week, it never occurred to me that his brain wiring was cause for a diagnosis. During his Kindergarten year my husband Rick and I carted our three sons to a family therapist to help us figure out how to keep up with the demands of family and work. Within the first five minutes of observing the five of us she informed us that Jacob seemed to have ADHD, to which I replied, “What did I do to cause it?” I didn’t even know what ADHD was! Overwhelmed by raising three kids, an 8 year old, a 5 year old and an infant, working a full time job, and dealing with the death of my beloved grandmother and my dad’s cancer diagnosis seemed almost too much to bear. The best advice I received from a good friend was “put one foot in front of the other and keep walking.” I did just that and eventually I found a semblance of new normal and realized that life will go on regardless of how you navigate it. I looked inward and realized that while circumstances had changed, I was still the same resilient soul I’d always been. And so we went through the twists and turns over the years until Jake was in 10th grade. I had decided during that time that Jake didn’t have ADHD, but nothing really fit his quirky personality and unique way of seeing the world.

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

Shelly: Asperger syndrome was not a new disability but inclusion in the DSM was. When Jake’s confirmation teacher, a child psychologist, told me about Asperger syndrome and suggested we go for a diagnosis, I immediately went online and began reading about it. It was a description of how Jake navigated the world around him, and I knew in my core that he has Asperger syndrome. He was diagnosed shortly after that. I recall the feeling of relief and of peace in knowing, and realized that while a diagnosis didn’t change who Jake is, it helped all of us understand him better, and support him better.

My three sons

Shelly’s three sons

Question: How has living with autism affected your family?

Shelly: I don’t know if life would have been any different without autism for my family. We are all unique individuals who love each other and respect each other’s way of being in the world. I think I understand a lot more about how unique each and every person is. It has helped me to think about how we are all created in God’s Image which, in my limited understanding, means that God must have so many very very diverse qualities!

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

Shelly: Patience as the journey continues toward living independently with a future of hope. It takes time and there is no proscribed schedule.
Question: What is currently your greatest joy as an autism mom?

Shelly: Jake is starting a new journey as a student in an 8 week information technology course followed by an internship and hopefully full time employment. Seeing how he has matured and taken responsibility for his choices, how kind, loving, and absolutely insightful, and funny he is the gift that keeps on giving.
Question:  Has autism affected your faith? Yes. If yes, how so?

Shelly: Many times I’ve been so angry at God. “Why me? Why my child?” I railed at God, cried, yelled, cursed. And then one day I realized that maybe God was hurting as much as I was. I realized that God had nothing to do with Jake having autism. I think God may have been hurting because the world is so unfair at times to people who have disabilities. I realized in that moment that God and I were partners and then I felt nothing but gratitude for having my faith and my beliefs. Since then I have come to believe that each of us has a purpose, and if we act as God’s partners, we will discover within ourselves that purpose. I don’t know whether God gives us a purpose or not. But I do believe that if we listen to that small voice within, then someday we will hear what it says and it will guide us to that purpose and that place.
Question: Is there anything else you would like to share about being an autism mom?

Shelly: I don’t think of myself as an autism mom. I am a mom of three remarkable men who continue to give me great joy. Each one of them continues to surprise me in their own unique ways. I do recognize that I am someone who others see as a mom of someone who has a disability who has navigated the unmapped journey and made meaning of it. I know that opening the doors for other moms to tell their stories, share their hopes, dreams and fears is more important than ever.

Jake and Eli

Jake with new nephew, Eli

 

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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