Positive Approaches Journal, Volume 11, Issue 4

Volume 11 ► Issue 4 ► February 2023

From Infants to Adults: How Two Mothers Have Advocated for Their Sons with Autism

Introduction written by David Knauss

Articles written by Kathrin Marti and Melissa Malone

Family is the foundation of life in the United States. When a family member advocates for an individual with autism, an intellectual disability (ID), or a mental illness, a great deal of good can come out of it. The motivation to help a loved one is borne out of several things: outcomes affect the entire family, the entire process of helping can make the family closer, the concern about the cost of care, and, most importantly, the deep love for the family member. There is a lot at stake. The following is a two-part article that shows how two dedicated mothers have spent many years advocating for their sons. The first article is by a mother of two sons with autism, ages 26 and 25. The second article is by a mother of a son with autism, age 32. This second parent is also the legal guardian of a young man with Down syndrome, and has fostered two other boys: a teen-aged boy with bipolar and attention deficit hyperactivity disorder (ADHD), and another boy with ADHD. 

How I have Been an Advocate for My Sons with Autism

Kathrin Marti

My name is Kathrin Marti, and this article is about how I have been an advocate for my sons, Christopher, aged 26, and Kieran, aged 25. Both of them have autism.

Pizza ,spaghetti, and meatballs are regular items on the menu at our house in Lebanon County, PA. Using premade frozen dough, Kieran has learned to make a delicious pizza, with unlimited toppings, the likes of which would rival any pizza shop that I know of, and Chris can roll the perfect meatball using ground beef, an egg, and some breadcrumbs. Like mothers the whole world over, we aim to teach our children to become as independent as possible, and to navigate the adult world when we are not around to help them. When your child has a disability such as autism, that can be a challenge, but we, being the warrior mothers that we are, do not give up. Preparing food for each other is one small facet of that process.  

Both of my sons were born in different states, and I was born and raised in a different country. The relevance of this fact is that I have no cultural frame of reference for many things that are known by most of the people who grew up here and have family connections here. So not only was the experience of having children with special needs a challenge it was also, for me, quite literally, foreign.

My firstborn, Chris, was born in 1996 in Massachusetts and was six weeks premature. As a first-time mother, with little experience of babies and a long way from family, it was a rough start. Chris spent time in the neonatal intensive care unit (NICU) and when he came home after six weeks, he was a very challenging infant, and then a difficult child. His dad, a US Marine Recruiter, had to work long hours and was unable to be around often. My occupational therapist brain now recognizes the sensory overload and discomfort I was experiencing, but at the time, I just felt incompetent because I could not settle him or make Chris happy. Being diagnosed with congenital hypothyroidism at three days old meant that he had to take thyroxine, and his dose was high, which probably contributed to his agitation. I tried speaking to his doctors about his constant agitation and screaming, but my concerns were mostly ignored or placated. 

My work was cut out for me. Over those first few months I lost so much confidence in myself as a woman, let alone a mother, and sought to educate myself by devouring every bit of information, from other mothers and from experts, that I could find for ways to help him. Most of it was unhelpful, and it was only once I started listening to my instincts and ignoring the well-meaning advice of others, most of whom had typically developing babies and children, that we became more connected, and Chris’ condition started to improve. The revolving door of Early Intervention therapists were supportive, and I was grateful for their input and suggestions, but there were times that I just wanted us to be left alone. It took this growth in my confidence to know that I also had the power to advocate for a break or to simply just cancel a previously scheduled appointment because we just needed to rest.

Later that year, we moved to the Pittsburgh area, and eventually, we were able to buy our first home and finally settle down. Not long after that I got pregnant with my second son, Kieran.  

In terms of advocacy, I gained confidence once I trusted myself, and was able to speak more clearly and definitively about how Chris was really doing and what he/we needed. We continued to receive support from the Intermediate Unit (IU) with Early Intervention, and when Kieran was born in 1997, we joined other support groups, such as the church, Mothers of Preschoolers (MOPS) and La Leche League and became part of the community. Kieran’s birth, happily, was typical in such a contrast to Chris’. When Chris turned three, he was discharged from direct IU services, just retained consultation for his developmental delays. We noticed a steep decline in his functioning that year, as did his doctors. We advocated for more supports and services but were denied. I felt like I was continually having to go into battle and fight for him which was very draining.

Making progress at the IU preschool

Finally, after a regular observation visit at his church preschool, the IU teacher called me and told me of her concerns about Chris. She said that he had been at that preschool for 18 months and still did not know a single child’s name. She asked if it would be okay for him to begin attending the IU preschool a couple of afternoons a week. Okay!! - I was delighted and it finally felt like I was being heard! He started later that week and the progress that he made in the right environment, with the right supports, was tremendous. When it came time to register him for kindergarten, I refused to send him -- he was making great progress at the IU preschool and I wanted to provide him the gift of time, and for the district to pay for him to continue there. I had anticipated a fight, like so often before, but they agreed. It was without doubt the best decision to retain him.  That felt like a huge win.  

Whilst all this was going on, Kieran was developing well. His vocabulary was extensive, and he was intelligent and inquisitive.  Even though there were 21 months between them, they were developmentally almost at the same level, including for things like potty training. We were fortunate that we could rely on some marvelous teenage babysitters in our neighborhood who were both understanding and capable. We had no family close by and by Kieran’s first birthday, both of my parents had died.  

In 2001, their dad retired from the Marine Corps, and we moved to West Virginia soon after. Both boys went to regular kindergarten and preschool. Chris received some speech therapy but that was it. Kieran attended a wonderful small church preschool, where his “quirkiness” (he was in his Blue Phase in which his clothes, for example, had to be the color blue) was accepted and he flourished. He learned to read in preschool and seemed to be doing well. When Kieran started having problems at school, his teachers asked permission to evaluate him and it came as a shock to learn that he had been diagnosed with Asperger’s syndrome, a form of autism.  I knew that he was “different” but thought it was because he was so bright. Having one child with special needs was rough, but two?? For a while I thought that God hated us. The fact that he would read dictionaries in first grade and would just walk around the perimeter of the playground every day instead of playing with the other children should have sent alarm bells ringing, but we thought that it was because he was just so bright and was bored.

We tried to involve both Chris and Kieran in typical childhood activities such as sports, Sunday school, and Cub Scouts, but it was always difficult. Their father became the Cub Scoutmaster and T-Ball coach so that he could be there for them and support them, but they still struggled.  

School was becoming more and more of a challenge for both boys. By first grade, Kieran was already refusing to go and was deeply unhappy. There were constant Individualized Education Program (IEP) meetings and we -- both Mike, my then-husband, and I -- felt like we were trying so hard and getting nowhere fast. In first grade, Kieran was evaluated for the Gifted Program, and for a while he was appeased with that as he enjoyed the lessons, but his behaviors were becoming more challenging. I advocated for Kieran to skip second grade, as he was already reading at a fourth- or fifth-grade level. The school was hesitant at first but permitted it. From third grade on, both boys were in the same grade, despite their age difference. That year, their father gained a promotion and he moved to Lancaster County, Pennsylvania, whilst I stayed in West Virginia so that they could finish out their school year.  

Finding more support in Pennsylvania

When we all moved into our house in Lancaster County, I can recall feeling positive about the opportunities for support that presented themselves -- so much more than was available to us in West Virginia. Kieran was assigned a 1:1 aide, which he continued to have from fourth grade until twelfth grade, but the district refused to assign one to Chris, whose behaviors were much more challenging. With the support of a 1:1 aide, Kieran was able to participate in the regular curriculum successfully for the most part, but I spent many hours around the IEP table for Chris. Eventually, he was reevaluated, and was finally diagnosed with autism spectrum disorder (ASD).

Chris’ receiving the diagnosis of ASD was a shock, but it finally made sense, and it meant that valuable supports such as Medical Assistance were activated, a benefit which has been worth its weight in gold. He also qualified for therapeutic staff supports(TSS), and behavioral supports. We found a psychiatrist who ended up working with us for many years, and the boys each received counseling and were prescribed medication. With all this upheaval, I confess that I was often overwhelmed and quite depressed, and sadly, it was at this time that their father found solace elsewhere and left the family, which added another tier of stress onto an already difficult situation.  

I became accustomed to IEP meetings where I was on one side of the table and ten teachers or staff members were on the other. Having to listen to the litany of difficulties that both boys (but mostly Chris) were experiencing was so hard. A plan would be made, but invariably it would fail.

I got to know their special education teachers well and felt that they were kind and supportive. The assistant principal at their high school took a special interest in Chris, and even kept a packet of hot dogs in her fridge for him for when he found the school lunch choices unappetizing, as by that time he had also been diagnosed with type 1 diabetes too, and so food became an issue.

Eventually they both graduated from high school, and Kieran, having earned an excellent SAT score (2040), achieved a scholarship to Albright College. Chris went to Hiram G Andrews (HGA) school in Johnstown, Pennsylvania. Life seemed positive and exciting.  

Everything changed when Kieran entered his third year at Albright. He was living with his father and commuting to college on the bus. Both of us tried to encourage Kieran to advocate for himself at college to access tutoring services and supports, but unfortunately, he would avoid asking for assistance or simply not show up when arrangements had been made. He had success with his general education classes, but  Albright steers students toward a professional major in their third year. He was (and still is) unsure of what career path to choose, so I encouraged him to take accounting courses, believing that would suit his personality and aptitude. Big mistake -- he hated his classes and did not do the work, failing them, and eventually losing his scholarship.

Navigating the world of work

Kieran dropped out of college four years ago and it has been an extremely difficult recovery since then. His anxiety and depression have increased considerably and there have been times when it has been difficult to rouse him out of bed. He has really withdrawn, and it has been difficult to get him to apply for jobs. Unfortunately, even when he applies for positions for which he is more than qualified, he cannot get beyond the interview stage because employers find his speech difficult to understand (his stuttering has increased tenfold) and his responses/demeanor during the interview are awkward to say the least. Kieran faces so much prejudice and, as a mother, it is heartbreaking to witness. I have advocated for him to receive speech therapy and interview practice but unfortunately the business world is less than accommodating for people like him.  

Chris was at HGA for almost a year, but that did not work out either. We tried to support him by visiting as often as possible, but with me working full-time and the three-hour drive each way it was very difficult. His father and I both tried to set him up for success and advocate for him to get the supports that he needed. Sometimes this worked and sometimes it did not. He was seeing the counselor daily and making his own appointments to get his medication, but ultimately, it was not enough.

Chris has tried to secure different types of employment since he returned after dropping out of college, but sadly, none have panned out. We have encouraged him to self-advocate by speaking to his supervisors about both his diabetes and autism conditions whenever possible and advising them to ask for accommodations where necessary, including having access to insulin and testing supplies, or a visual checklist of tasks to be done.

In 2022, both Chris and Kieran worked at a warehouse facility in Lebanon County, Pennsylvania, and were also able to take advantage of the job coaches, which were paid for by the Office of Vocational Rehabilitation (OVR). The Lebanon Youth Program, operated by the Lancaster-Lebanon IU, assisted with placing Kieran in that job. The job coaching did help, but unfortunately, neither Chris nor Kieran were happy there and they resigned.  

Navigating the adult world for an individual with autism is remarkably difficult. Whilst at school, there are supports that can be put into place and it feels like there is a team to support you, both as an individual and as a family. However, once you have graduated, it is a very different story. We can only speak from our experience, and it has been chaotic to say the least in the last few years. One of the problems that we have faced is that both Chris and Kieran have been denied any kind of Social Security disability benefits and so have no financial support whatsoever beyond what I (and sporadically their father) contribute. It is as if they are deemed too disabled to work by the business community and not disabled enough by Social Security. Another problem that  I have faced is that I do not really know what supports are out there and how to access them. There is an alphabet soup of agencies (OVR, ODD, etc.) and I have found that in order to meaningfully advocate for your adult children with autism, you really have to be that squeaky wheel. You need to reach out to as many contacts, preferably who have walked this walk before, as you can and keep on pushing. We recently re-engaged OVR to help Kieran and Chris gain employment supports and education. The pandemic did not help, but I will not give up until both Chris and Kieran have found functional, worthwhile employment where they can be part of the world, just like everyone else. One bright spot was that Kieran recently obtained his driving license, which was fantastic. 

In conclusion, I would say that if you have a child with a disability such as autism, it very often feels like you are on the outside looking in and it can be very isolating. It is tempting to give up, and frankly, I think that there are many people in our situation who would have, but do not. Keep fighting! We are warriors, and we will blaze a path to make it easier for others in the future, but for right now, find your tribe, be it a support group, church, family or whatever, put your armor on and go into battle for your child because both you and they deserve nothing less.

An Advocating Journey

Melissa Malone

Advocating for family members with special needs is a topic that is very special to me. I have been an advocate for both my 32-year-old son Mike, who has had autism since he was born, and for a boy with Down syndrome who is now, at age 25, a member of our family. Additionally, I was blessed with the opportunity to advocate for a teenage boy with bipolar disorder and attention deficit hyperactivity disorder (ADHD) who lived with us for one year. And I was a foster mother for another ADHD child who lived with us for nine years. The following is my story.

After four years of marriage, Michael William Malone was born in May 1990 to Melissa and Shawn Malone. Blessed with our bundle of joy, a new home purchase in Montgomery County, Pennsylvania, and career jobs, time flew by quickly. The first two years we attended to Mike's medical needs of a left club foot correction and hearing issues due to acute ear infections. By the age of two, it was evident Mike had some developmental delays of speech, fine motor skills, physical mobility skills, attention, and socialization. Since his birth I fortunately scaled back with my job and settled into a part-time human resource position from my full-time job. Because of his delays, Mike's pediatrician prompted us to get him tested with the Intermediate Unit in our area. He did qualify for Early Intervention services and attended a learning center daycare program three days a week at two and a half years of age. Mike started to make better progress; however, his teachers informed us that Mike had extreme attention issues. He was disruptive during circle time, always getting up. Instead of walking around his peers while they played with toys on the floor, he would unconsciously walk through the toys. There was talk that Mike could benefit from a one-on-one aide, but the question was how to make this happen when the initial request of the service was denied.

Luckily, the learning center advertised a weekend conference for parents with special needs children.  I cannot remember what agency sponsored the event, but Shawn and I jumped on the chance to apply for a scholarship and were accepted. This was our first chance to seriously network with other parents. What a beautiful event! Meeting those other parents was so exciting, but almost embarrassing when asked “what diagnosis does your child have?” It gave me a reality check of what some parents faced medically and emotionally when they shared their children's stories of cerebral palsy, blindness, deafness, muscular dystrophy, epilepsy, etc. When I said we have a corrected club-footed, hyperactive, developmentally delayed child, I just felt like we were unqualified to be at this type of conference. However, with the wealth of knowledge and friendships formed, it made a huge difference in our lives to know we were not out there by ourselves! We attended the same conference a year later as well.

At the initial special needs conference we attended, one advocate kept coming up as an excellent resource, free of charge, so we contacted him to see if he could help us advocate for Mike to get a personal care aide in Early Intervention. Upon meeting him he shared he had a law background, although he was not officially a lawyer. He traveled across Pennsylvania helping families with advocating. He had a special needs child himself, so what could go wrong? After briefing him on specifics, I had him attend our child’s Individualized Family Service Plan (IFSP) meeting. It was unexpected when he came on like a bulldog, giving the Intermediate Unit an ultimatum. Oh my, I almost freaked out then and there and he was on my side! The teacher was crying, and I was so nervous I literally ripped my nylons I was wearing. I asked him afterwards if that was necessary to come on that strong and he told me, YES as he did not have time to loop around for second rounds. It was not my style of communicating, but it worked. Mike had a personal care aide.

When Mike was three years old, I changed my work field to part-time banking which helped me concentrate on Mike’s developmental milestones. My working hours were coordinated with his preschool hours. It worked out nicely to concentrate on his speech, behavior, and hyperactivity.

In 1994, when Mike was four years old, talks ensued from my family if we would consider moving back to Lebanon County to occupy a family homestead residence. Wow, what a question! We only owned our Montgomery County home for four years. Could we swing this? Shawn’s career was based out of Philadelphia, but it would be nice to have family support close by. Could he swing it? His answer was yes, so the house was sold and on the way we went.

Mike starts public school

At the age of five, Mike was starting kindergarten in Lebanon County. He had an Individualized Education Plan (IEP), so again I said, what could go wrong? Well, the special education director of our school district at that time announced to us they do not provide individualized speech therapy, even though it was listed on his IEP, and he would need to use classroom aides. Now what?! Was I going to call our previous bulldog advocate or try to handle this myself? The speech therapist at the time agreed with me, that Mike’s attention span was really impaired, but he wanted to tread carefully with this situation. So, with his help collaborating with me about the facts of Mike’s case, the school system finally supported it. This should have never been an issue since an IEP was a legal document. When I asked what was the problem that this was an issue, I was told, “parents are not really involved around here, they just go with the flow. You deciding to advocate for your child not only rocked the boat but sunk it.” OK, that was surprising information.

Also at age five, Mike was officially diagnosed with attention deficit disorder (ADD). The evaluator said she did not usually put a label on children that young, but when Mike wrapped himself up like a hot dog with a hospital room divider curtain, she felt that that, and other history, was enough to warrant the diagnosis.

Between the ages of five and seven, Mike began to have more pronounced behaviors of stimming -- whirling, twirling, humming, rocking back and forth, and hand gesturing. He also was very pervasive with his thoughts. After we sought out another well-known developmental specialist in our area, he then was diagnosed with pervasive developmental disorder (PDD). I still remember the doctor after evaluating him for a half day stating, “This was an easy one. He talked about Goosebumps books while traveling up the elevator, down the elevator, and fit it in on every opportunity throughout the evaluation.” At this point we did pursue medication management to aid Mike with his impulsiveness, short attention span and hyperactivity. In elementary school, supports were going strong. We had supportive teachers who I  handpicked to best suit the needs of Mike. I think with me being so involved with tutoring him, the principal and special education director gave me that privilege.

Community support in Lebanon County was good. When Mike was five, I joined the Children and Adults with Attention Deficit Disorder (CHADD) group in our area. What a pleasure to meet other parents with children of similar needs. I eventually became a co-leader in CHADD and attended National CHADD conferences to educate ourselves and others. I just loved the support and being able to support others. It really made a difference in our lives.

In 2000 after working a part-time job as an accounts receivable analyst for two years, I was blessed to find out our area was training bachelor’s degree graduates (like myself) to substitute teach in our area. It was the perfect part-time job for me! I was sure it would be a good fit, even though I was a business major. Tutoring Mike so heavily throughout his school career, I knew I would love teaching.  The flexibility of scheduling and summers off, who could beat that?! Again, I learned so much from this job and really had a fond heart for children with disabilities. Specialized classes of life skills, learning support, behavior support, and autism support were my favorites. I felt I understood these children.

With us being back in my hometown in Lebanon County, our family got to know Mike better. In general, our family and friends were accepting of Mike; however, my ex-Marine Corps father had more difficulty. When Mike was small, Grandpa had a hard time accepting his autistic behaviors. We had a behavioral specialist talk with him. He told her, “A good slap on the butt would correct the problem, and she (myself) just did not know how to properly parent Mike.” My dad’s relationship with Mike failed to bloom to its full potential. My father died when Mike was 14.

I initially feared Mike attending middle school. How was this all going to work with a different teacher for each subject and the increasing academic demand? Upon meeting the learning support teacher, I was relieved. She was the master coordinator of all and wow, did she do it well. Mike’s aide scribed notes for him in class when he could not keep up, and the learning support teacher manufactured study guides and adapted tests that were mostly multiple choice and true/false, limiting the amount of essay questions. The only time Mike had to use the learning support classroom was for testing. It was a dream come true! Inclusion was again working well for Mike.

We had a similar experience with high school. That learning support teacher was the principal’s wife, and we had the inside track when we hit any bumps in the road with teachers. During Mike’s senior year, he was able to secure his first part-time employment with Service Source, at Fort Indiantown Gap National Guard Base. The government had an AbilityOne Program contract (from the U.S. AbilityOne Commission, an independent federal agency) to hire personnel with special needs. Mike was fortunate to secure this job as a dishwasher and performed this job as part of his afternoon high school curriculum. (Mike still works there today, one day a month.) I felt so blessed! Life was good. There was minimal friction all around.

Embracing more children with special needs

A call from a high school friend changed all of that. Her youngest boy, aged 16, was self-destructing in the Florida school system. He was being held back for a third year and was quite distraught. After talking to Shawn, we decided to offer to take guardianship of him for a year and have him fly to Pennsylvania to live with us. He was diagnosed with bipolar disorder on top of his ADHD diagnosis. He received proper medication management, counseling to address trauma as a youth, and heavy learning support through an adapted IEP. Unfortunately, his biological father decided to take him to a different state the next year and he did not fare as well. But I felt satisfied that we gave him a good foundation to build upon. The lesson learned was, passing the ball to others does not always work out as expected.

We were not done helping children. The next year a friend of ours asked us to get involved in foster care. We took in a seven-year-old child with ADHD and a learning disability and a non-verbal nine-year-old child with Down syndrome. We had them both for a five-year period under foster care.

With the child with Down syndrome, we took a Subsidized Permanent Legal Custody agreement when his mother, who had four other special needs children and could not take him back and asked us to please keep him. When this child turned 21, I took permanent guardianship of him; he lives with us today and is part of our family.

The child with ADHD was scheduled to go up for adoption. Shawn was adamant he did not want to legally adopt either child. Then, one day Shawn asked me if I was going to put the Down syndrome teenager in a group home when he turned 18. I was devastated and responded, no. Shawn explained he was eligible for early retirement and wanted to travel and did not want the younger set of kids to weigh us down. I promised him that would not happen, but that apparently was not a good enough answer. That summer after I took the younger children to Florida, Shawn let me know he was having serious heart-related symptoms and needed a lot of testing completed. His mood turned to the worse and I felt helpless in this situation. After three mini vacations that summer, Shawn announced he needed to leave us and he got an apartment by himself, in order to “find himself.” I was devastated. Being married for 22 years at that point, this crushed me, but what was I going to do?

Mike graduated from high school and went off to live at a technical school for adults with disabilities. After about a month of classes, Shawn visited, and a special friend joined them for supper. Mike freaked out when he realized this was not just a friend. Mike called from school to tell me about the situation. Within two days I got a call from the school letting me know our son was mentally unstable and I needed to pick him up and get him evaluated. When a cousin and I arrived, Mike was pacing back and forth saying he did not want to live. I coaxed him to the car, as the cousin loaded up his personal belongings. I felt beyond devastated. I can even feel those emotions of that day flooding back in me writing this. How could everything we worked so hard for with Mike come crashing down?

Now I had to switch my brain into pure survival mode. The younger children were now 11 and 12. Through a lot of tears and prayers we made it to the other side. The child with ADHD got adopted by a college professor and public relations director. I was so nervous about this, but felt I needed to let this happen for his best interests. They were gracious enough to make an informal deal with me that I could still see my lad, one weekend a month, a couple weeks over the summer and part of Christmas vacation. I was ecstatic I could still be in his life. From the ages of 18 to 21, due to his wayward actions in a bigger city, he did come back to live with me full-time. He graduated from high school in Lebanon County with his IEP accommodations. The adopted parents were very supportive, and it all worked out for everyone.

It was determined it was best for Mike to not return to trade school, especially with his first-choice study of bookkeeping being discontinued. He really did not want any other curriculum. Shawn asked for a divorce and was loosely connected to Mike moving forward.

Nevertheless, life was getting better for Mike. A year earlier, at around 20 years of age, Mike had applied for the Pennsylvania Adult Autism Waiver. At age 21, bingo, fate was on his side.  A slot opened and he immediately enrolled. This Waiver was a lifesaver for me, being a single parent. Mike had so many opportunities to advance his job skills, communication skills, and social skills. The agencies we signed up with were both very good. They provided community support services to assist Mike one on one. One agency handled behavioral support, and this helped Mike, who was having a lot of picking-his-skin tendencies. The other handled community support and skill building.

Assisted by this Autism Waiver support, Mike was gearing up for further exploration of the work force. His goal – to get an office worker job. From 2013 to 2017, he journeyed through a succession of six jobs – one of them as a volunteer – while continuing to work part-time as a dishwasher at Fort Indiantown Gap. Here are the jobs that Mike worked at:

All in all, lessons learned from 32 years life experience of raising and advocating for a special needs child are:

Conclusion

The two articles above provide much insight into the great amount of time and effort needed by a parent to advocate for a child with autism. The two mothers, Kathrin Marti and Melissa Malone, give us a window into the challenges, successes, emotional toll, and lessons learned they’ve experienced in their journey of helping their sons. These stories are written within the very important context of family. Their separate articles are long and worth reading; they are written from the heart.

Kathrin Marti was born and raised in Liverpool, England. She worked as a teacher before meeting her (now ex) husband in Berlin, Germany, who was a U.S. Marine. She moved to the U.S. with him in 1992 and lived in North Carolina, Massachusetts, West Virginia, and Pennsylvania. Kathrin had two sons, Christopher in 1996 and Kieran in 1997, and was a stay-at-home mother for a number of years. Her oldest child had some health issues from birth, was involved in Early Intervention, and continued with therapies and special education. But her second son did not exhibit concerning behaviors until he started school. Both boys are now diagnosed with autism spectrum disorder. Kathrin and her family moved back to PA in 2006. She became a single mom in 2008 and went back to college to get an occupational therapy associates degree to support herself and her children. Her sons are now 27 and 25, really struggling to find their place in this world.  

Melissa Malone was born in 1961 and raised in Lebanon County, PA. She graduated from Elizabethtown College in 1983 with a bachelor’s degree in business administration--marketing and management concentrations. She moved to Montgomery County, PA, and pursued management positions in retail management. Melissa married in 1986, and in 1990 they bought their first home and had their son, Michael. In 1994 they returned to Lebanon County, still actively advocating for Mike's special needs. In 2000 Melissa became a substitute teacher in Lebanon County. She and her husband became foster parents in 2004. She separated from her husband in 2008 and eventually got divorced. Melissa is still doing foster care and currently has one placement. 

Dave Knauss is retired following a career of 29 years in Pennsylvania State Government. He served as an Income Maintenance Caseworker for 12 years at the Berks County Assistance Office. He also served as a Human Services Program Specialist doing policy work at the Office of Medical Assistance Programs and doing quality assurance work at the Office of Long-Term Living. His career also includes ten years as a reporter and editor at three newspaper organizations in central Pennsylvania. He has a Bachelor of Arts degree in American Studies from Dickinson College. From 2007 to 2019 he served as the volunteer leader of a support group for adults with ASD, Spectrum Friends of Lebanon County. He was diagnosed with Asperger Syndrome in 2003. While his ASD is just a small part of his identity, he believes his ASD is a gift.

Contact Information

Kathrin Marti

COTA/L or Certified Occupational Therapy Assistance, school based 

kathrin63@fastmail.us

 

Melissa Malone

Foster Parent

melissamalone77@yahoo.com

 

Dave Knauss

dcharlesknauss@gmail.com