This is a follow-up solo episode from Episode 146, my interview with Christina Madison, PharmD, FCCP, AAHIVP about autism awareness and acceptance (April 2022).
My name is Kim Newlove, and I’m the host of The Pharmacist’s Voice ® Podcast. I am 43 years old, and I have a 19-year-old son with autism. I’ve been married for more than 20 years, and my husband and I also have a 17-year-old son. Kraig is 19. Derrick is 17.
In this very personal episode, I wanted to share my family’s experience with autism diagnosis and treatment. Resources are also mentioned in this episode (websites and books).
This episode is specifically targeted for parents of young children with autism who would appreciate hearing about another family’s experiences and their words of wisdom. I wish this kind ofminformation would have been available in 2005, when my son was newly diagnosed. I honestly didn’t have much time to read.
If you know someone who needs to hear this episode, please share it when them. If you have questions, contact me using the contact form on my website https://www.thepharmacistsvoice.com/#contact. Thank you. 🧩
Disclaimers: As a pharmacist, I’m dying to make this episode as complete and helpful as possible, but I’m sure I’ll leave things out. I’m a human. I’m a parent. And, I’m just trying to help. I’m not a developmental pediatrician, child psychiatrist, child psychologist, or pediatric neurologist. I’m not treating YOUR child. This episode is not meant to diagnose, treat, prevent, or cure autism. I’m just sharing my personal experiences as a parent of a child with autism. This episode may also make you want to be a stay-at-home Mom. If you’re a working Mom, it may make you question yourself. Don’t. If you can’t be a stay-at-home Mom, you’re still a good Mom. I’m not judging you. Don’t judge yourself.
Thank you for listening to The Pharmacist’s Voice Podcast Episode 147. To read the show notes, visit https://www.thepharmacistsvoice.com/podcast/ and click on episode 147.
Mentioned in this episode
Dr. Richard Solomon https://aacenter.org
Paycheck starring Ben Affleck
Lucas County DD
Wood County DD
Samonas Sound Therapy
Social Security Income
VB-MAPP by Mark L. Sundberg, PhD
Vocabulary terms in this episode not listed elsewhere
- Stereotypical (of autism) repetitive behaviors
- Pediatric neurologist
- Pediatric psychologist
- Pediatric psychiatrist
- Pediatric neurologist
- Early Intervention
- IEP Individualized Education Program
- Special Needs Preschool
- County Board of Developmental Disabilities (DD)
- Special Needs Trust
Highlights from this episode
If you constantly feel overwhelmed, you’re normal.
Set the vision for what you want your child’s future to be like. Find people you trust in the treatment and education space, and listen to them. Grow personally. There is more than one way to help your child. Open your mind and your heart.
Kraig was diagnosed with autism at age 2.5 years old in September 2005 by Dr. Richard Solomon (Ann Arbor, MI). Kraig had a significant speech delay and stereotypical repetitive behaviors, such as spinning wheels and flapping his hands.
Here’s a line from the Ben Affleck movie Paycheck that has stuck with me: “If you show someone their future, they have no future. If you take away the mystery, you take away the hope.” What does that mean to me? If I knew that Kraig is going to be ok some day, I may not have tried so hard to help him.
If someone (family member, therapist, clinician, or educator) “looks into a crystal ball” and predicts what your child will be like some day, take it with a grain of salt or run the other way. No one can be certain.
It takes a village to raise a child with autism. There are a lot of people trying to help Kraig meet the vision my husband and I have set for him. Vision statement (official): “We want Kraig to feel good about himself. If he is able to work, we want Kraig to have a job that he is good at and enjoys. We want him to live in an environment that allows him to achieve as much independence as possible while providing enough supervision and support to keep Kraig safe from hurting himself or others. We want Kraig to have things in his life that he looks forward to: family gatherings, activities with friends, travel, experiences, playing games, reading books, staying active outdoors, eating favorite foods, etc.” To that, I would add, “We want Kraig to be able to get his wants and needs met using a total communication approach (sign language, picture cards, verbal speech, head nods/shakes, and a communication device).” We set the vision. It’s up to Team Kraig to make it happen. It takes time and patience to make progress.
For parents concerned that their child may have autism, start with a pediatrician. Get a referral to a developmental pediatrician, child psychiatrist or psychologist, or pediatric neurologist for an evaluation. Waiting lists can be years long. Start today. Pediatricians may also have lists of resources, like therapy providers or a dentist skilled at treating children who are on the autism spectrum.
Let’s say your child is on the waiting list for a diagnosis and that you need an evaluation for services (not a diagnosis).
- Contact your local Early Intervention (Help Me Grow) program for kids ages 0-3 years.
- After age 3 years, contact your local public school. An evaluation can qualify your child for services.
- When you don’t know your options, getting help can be a lonely journey. A diagnosis of autism can lead to treatment and support. Support and services for the family are also available.
There are official therapies and unofficial therapies. There are things that can be used as therapy even though a credentialed individual is not providing the therapy.
Unofficial therapies listed in this episode
- Fun classes!
- Gymboree (age 2)
- Kindermusik (age 2-4)
- YMCA Tee-Ball, swimming lessons, cooking class, basketball team (age 4 and up).
- Picture cards (PECS or Google images)
- Lose the Training Wheels camp at age 8
- Weighted products: blankets and vests.
- Meeting sensory needs with swings, shaving cream, crash mats, etc.
Official Therapies, Tools, and Strategies we tried for Kraig. (Others exist)
- Diets? None
- Supplements? None
- Early Intervention (0-3 years): play groups and individual home visits.
- Speech therapy at The University of Toledo (age 2)
- Speech therapy at Rehab Dynamics (age 2.5)
- Occupational Therapy at Rehab Dynamics (age 2.5-age 16.5, I believe).
- Samonas Sound Therapy (OT Tool).
- P.L.A.Y. Project Therapy (age 2.5) Play and Language for Autistic Youngsters. It was created by Dr. Richard Solomon
- Public school on an IEP (age 3) at Toledo Public Schools (2006). We moved in 2007 for a better public school system.
- ABA (Applied Behavior Analysis) through Capable Kids Preschool (starting at age 3.5, at school and at home)
- Public school Kindergarten a year late (at age 6.5).
- Using social stories to teach about social situations. Ex: “We’re going to the doctor.”
- Perceptual motor development (PMD) clinic at UT (Kinesiotherapy program)
- Swim and Gym at Sunshine Children’s Home
- Therapeutic horseback riding “Lucky Riders Program” at Serenity Farm Equestrian Center AND Sunshine (www.sunshine.org)
- Summer Camps and Extended School Year (ESY). Ex: Bittersweet Farms. www.bittersweetfarms.org
- Toilet-training consultant: Kim Renner, BCBA.
- Therapy Dog from the Ability Center Assistance Dogs program (starting at age 8, in 2011). “Bond” (a golden retriever) was on Team Kraig for 6 years.
Having a child with autism taught me that I need to ask for help. No one was going to swoop in, figure out what my child needed, and then search for solutions for him. Nope! That was my job and my husband’s job. There is help all over the place. There are waiting lists, too. But, if you know what you want for your child (or rather know what they need and have a vision for), and you haven’t pursued it, start today! It’s not too late! Use your voice. Talk to the county board of DD. Find a diagnosing physician or psychologist. Get a plan. Talk to the local public school. Join a Facebook group. Listen to podcasts. There is so much that you CAN do. Think ability first! I challenge you to get started today.
I joined a “Mom’s Group” when Kraig was less than a year old. We got together for play groups and had “Mom’s Night Out” every month. Having fun and support is important!
My husband and I aggressively pursued fun for Kraig when he was diagnosed with autism! I would highly recommend doing whatever helps you engage with your child. The following list might give you ideas of stuff to do with your kids. I know that BOTH my kids had a blast hanging with my husband and me over the years!
- We listened to music!
- We watched videos!
- We watched TV Shows!
- We gave piggy back rides
- We put Kraig on horse rides at carnivals and fairs.
- We played games with simple rules, like Candy Land Castle
- Each of my boys rode on the back of my motorcycle, starting when Kraig was 9 and Derrick was 7 years old.
- We bought a backyard play set with swings, a fort, teeter totter, sandbox, and more
- As Kraig got bigger, we graduated to a bench swing!
- We practiced blowing out candles so Kraig would blow out his birthday candles.
- We drew with sidewalk chalk
- Play dough and all the fun toys that go with it!
- Fulfilling sensory needs with swings indoors too.
- Water balloons in the backyard
- Trampoline in the backyard
- Water balloons ON the trampoline in the backyard
- Plastic pool in the backyard (4 ft across)
- Making handprints in concrete and decorating it with glass pieces (Great Mother’s Day or Father’s Day gift!). We made ours for Father’s Day 2007.
- Baking cookies
- Painting with paintbrushes. Kraig loved painting his hands and making hand prints on paper.
- Raking leaves and jumping into piles
- Obstacle courses in the backyard.
- Climbing trees in the front yard.
Places I was able to go because I was a FT Mom, PT pharmacist
- Attended church as a family
- The Toledo Zoo
- Imagination Station (local kids science museum)
- Swimming pools
- Amusement parks (Cedar Point)
- Water Parks
- Sledding in the winter
- Day out with Thomas (Dearborn, MI)
- Class parties at school
- Family parties
- Pumpkin patches
- Corn mazes
- Hay rides
- Apple orchards
- Carving pumpkins
- Halloweekends at Cedar Point
- Browns Game
- Mini golfing
- Fire station tour for Mom’s Group
- Birthday parties for my kids and their friends
- Vacations: Disney World in Florida, Hawaii, Chicago, and New York City.
- Baseball games (Mud Hens, Detroit Tigers)
- Vacation Bible School + slushies each summer
- First Day of School
- Last Day of School
- Sleepovers with friends
- Coaching sports
- I was able to take Derrick to summer camps.
- Winter stuff, like Meet Santa
- Children’s Winter Wonderland in Sylvania each Christmas Season
- Ugly sweater party and Christmas Cookie Exchange at church
- Holidays at the Manor House
- Meet the Easter Bunny
- Color and hunt Easter eggs
- Hockey Games
- Rock climbing at the YMCA.
- Rock Climbing at Planet Rock in Ann Arbor, MI (home of my bachelorette party)
- Visiting toy stores regularly
- Gum balls and junk food. I was not kind to my body in my 20’s and 30’s, but I ate a lot of tasty foods!
- Kayak trips
- Bike rides at parks and on trails
- Eating lunch with the kids at school
- Going to concerts, like Trans-Siberian orchestra, Sesame Street Live, and Disney on Ice
- Planting a backyard garden with zucchini, tomatoes, and lots of flowers
- Ring bearer in my sister’s wedding in 2013.
- School plays, concerts, sporting events, movie nights
- Alumni Gatherings at the Univ of Toledo: ice skating/pizza, homecoming football games, Rec Center trips and pizza.
- Therapy pool at the YMCA.
- The Community Pool in town
- Kayaking (duplicate – oops!)
- Playdates with friends eating goldfish and apple juice on picnic tables and playing on their swing sets.
I chose to stay at home because it was the right choice for my family. Even if I worked full-time, I would not have been able to pay for childcare and therapies while keeping on top of applying interventions for Kraig at home, keeping up with chores, etc. It was a hard choice trading my clinical career for being a stay-at-home Mom, but I know I made the right choice for my family. I had a lot of fun too!
A properly motivated child will make more progress than one who is not motivated. (This is true of typical kids and working adults too!)
Don’t play the victim card. There is NO CURE for autism. Set a vision. Make goals. Work hard to achieve them. Motivate your child. Keep it real. Don’t treat others like they have the cure and they’re keeping it from you. You are not a victim. There is help to be had. You got this!
I’ve learned is that it’s ok to give up on some skills that Kraig never picked up. I can’t focus everyone’s energy on things that aren’t important in the big picture.
One of the #giftsofautism for my family is that we have thousands of pictures and lots of fun memories.
One of the myths about autism that I have a hard time busting for people is about time. People think all I need is a babysitter so I can just…(do this little thing for them that takes 3 hours). Nope. It doesn’t work that way. If I had three more hours in my day, I would spend it on self-care and things that fuel me. Be kind to yourself. Ask for help. Set boundaries. Say, “No” to things that don’t fuel you [or help your child]. The struggle is real. Push through your challenges.
Myths about autism and parents of children with autism abound. Time issues are just one. Another myth is that when your child reaches 18, things are easier. That’s not true. Ex: guardianship, SSI, Medicaid, transition to adult services, and more.
The last section in this podcast episode is about Resources: 3 websites, 4 books, and my opinion that humans are the best resources. Find people you trust, and listen to them. You don’t have time to go back to school and become a special ed teacher, an occupational therapist, a speech therapist, a developmental pediatrician, etc. So, find all those people in your community who work well with your child, and listen to them. Remember, human resources are the most important resources! Create a team, and work with them.
Researching autism is an endless rabbit hole, so keep it light. If a book looks good, read the table of contents first. Don’t pressure yourself to read cover-to-cover. That would be ideal, but if you need to know about a topic, and you only have so much time, it’s ok to read just one chapter or the text above the fold on a website.