Category Archives: Autism

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.

 

    

  

 

 

 

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.

Prom

20170210_183003As Director of Faith Inclusion Network, an organization that promotes inclusion and integration, I want to preface this story by addressing the important issue of “segregated” versus “integrated” events for people with disabilities or special needs.   I recognize that the Tim Tebow, “Night to Shine” Prom is promoted specifically as an event for people with special needs, therefore it is somewhat segregated by design.  The registered guests-teens with disabilities- are treated as “VIP’s”, getting special treatment, a buddy to hang out with and lots of attention. Some people do not want their loved ones with disabilities to be treated differently or “special”, and in many ways I agree with that.  But the Tim Tebow Foundation’s mission for this event is to “celebrate people with special needs”, https://www.timtebowfoundation.org/index.php/night-to-shine/ one that FIN shares as part of our vision to accept, include and celebrate all persons affected by disability in our faith communities. We all deserve to be celebrated some times and I think this event was a beautiful example of people coming together to say, “Yes, we do care and you are important and worth celebrating.”   

As I mention briefly in this story, there may be ways to make the “Night to Shine” prom a more integrated event, but the love, care and good intentions made for a very special evening. I choose to support and embrace any group that works so hard to understand my daughter and others who experience severe disabilities, challenges that can make it impossible or extremely difficult to participate in typical experiences like high school prom.

I hope you enjoy our personal story about my daughter’s first prom.  Blessings, Karen J.

 

Prom

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I didn’t think I would be so excited about the idea, but the minute I registered my 19 year old daughter Samantha for the Tim Tebow Foundation “Night to Shine” prom for teens with special needs, my mind started racing. Would Samantha like it? Would she be willing to try on and wear a prom dress, not to mention the shoes to go with it? (Somehow, I couldn’t see her in the slip-on, crock-style shoes she usually wears.) Would Samantha be willing to go to a new place, with all the stress that usually involves?  And, the harder question…would I be willing to try this, risking the disappointment if it didn’t work out?

With the help of Samantha’s capable, young and enthusiastic caregiver, Deja, we went on a search for a dress.  To be clear, Samantha does not usually “do” shopping, not to mention trying on clothing.  So we proceeded to the mall, unsure as to whether or not we would be successful in trying on any dresses at all.20170204_133231

To my surprise and delight, Samantha seemed excited about the dresses, shyly smiling and enjoying the fuss. About six dresses in, we found the size and style we liked. What did Samantha think? Her smile said it all!  The icing on the cake was that there just happened to be some cute shoes on sale that even fit.  Through misty eyes, I had to admit…we had an outfit!

As prom day drew near, Deja and I kept mentioning the big event in conversation. Although Samantha does not really express herself with words, her excitement was clear; her sly smile seemed to convey her anticipation.

When Feb. 10 was finally here, Deja engaged Samantha in a long session of hair and makeup. I stayed out of the way…letting them have fun together, although I was secretly amazed Samantha tolerated the makeup. This was her first very time with anything on her face at all. I was mesmerized by her grown-up look.

20170210_172135We made our way to Trinity Church http://www.trinitychurchvb.com/ in Virginia Beach for the festivities.  Options included a limo ride (but we chose not to try that) hair and makeup stations (Samantha did get a touch up on makeup) and of course dancing and dinner. Though the space was quite crowded, Samantha hung in there, tolerating the loud music and tight quarters quite well. At the end of the evening, back on the dance floor, all of the guests received a tiara or crown.  Samantha wore hers for a minute or so, dutifully fulfilling her obligation, but making it clear she was only going to go so far.  Good for her!

As I ponder Samantha’s very first formal dance experience, I can’t help but wonder why it meant so much to me.  There were certainly distinctions that made it different from my own high school proms.  I did not go for free, nor did I have a special makeup and hair stations or receive a crown.  My dinner out with friends before the prom was very different as well. I was a bit disappointed that there seemed to be a missed opportunity to have all the prom “VIP’s” eat with the many typical high school volunteers that were the buddies, although I think that space may have been an issue.  Yet, for Samantha, a teen with significant special needs, it was a good night, a special night.

Perhaps the most important part of the whole experience for me is what I learned. First, I realized that my 19 year old daughter is really growing up. Despite her autism she is ready for new social experiences that include the fun of dressing up, extremely loud music and dancing with kids her age.

Before the Night to Shine Prom, I was doubtful that Samantha had any interest at all in going to a formal dance.  I had actually considered having her attend her high school prom last year, but could not convince myself that she would like it.  I did not know how she would behave, not to mention the uncertainty of how others would perceive her. The “Night to Shine” prom gave Samantha a first time experience in a safe setting where some very caring people wanted to make it a fun time for her.  Maybe we are now ready to try senior prom. Well…maybe, but it is wonderful to now know it is a possibility.

My perspective has changed now on Samantha’s participation in proms (and other formal settings) and for that I am truly grateful. Many thanks to the Tim Tebow Foundation and those at Trinity Church who organized the “Night to Shine” Prom.  Thank you for caring enough to give my daughter the opportunity to experience her first formal dance. Thank you too, for giving this special needs mom the chance to see her only daughter in a new light; as a beautiful young woman on the threshold of adulthood.

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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!

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