Our son was born with cCMV, the doctors told us we would have to wait and see what the effects would be throughout his life. God wanted to use the Wait and See to show himself. I'm a mom of a child with special needs-autism, ADHD, unilateral hearing loss
Life can be hard and the weeds can be tall. A few thoughts on how to look at weeds in our lives and see the beauty that lies beneath. --- Support this podcast: https://podcasters.spotify.com/pod/show/amber-mustain/support
Man, halloween can be super stressful, but I'm hoping these few tips and strategies can make the festivities fun! 1.) Let your kiddo choose their outfit and try it out before the night of trick-or-treating. 2.) If your child is easily scared, talk about the scary things and remind them it's not real and you are there to help keep them safe. Also, go when it's light out to help with making it less scary. 3.) Take a picture of your child in their costume in case they get away from you. Also, have them wear some sort of lighting feature or place reflective tape on their costume. 4.) Exchange candy for books, toys or another non-candy reward. 5.) Get to bed at your normal time. This helps to reduce the chances of having a few hard days. I hope this helps make your halloween successful! --- Support this podcast: https://podcasters.spotify.com/pod/show/amber-mustain/support
Good morning! I wanted to share a few things we are working on in our home. The summer has been hard with some different behaviors popping up, and we have decided to take a step back and focus on three important disciplines: Respect, Obedience and Self-control. I talked about ways we are doing it and the focus is not only on Colten's behavior, but our own! We love the beginner character cards from September and Co. They are a great way to help our kids learn character. You can purchase them HERE --- Support this podcast: https://podcasters.spotify.com/pod/show/amber-mustain/support
Episode 17 | Dr. Edward (Ted) Maynard, MD June is Congenital Cytomegalovirus (cCMV) Month, and I was so happy Dr. Maynard had time to chat with me about all he and the Colorado cCMV group is doing to bring change and awareness in Colorado and hopefully nationwide. Dr. Maynard recently retired after 25 years in primary care at Iron Horse Pediatrics in Colorado Springs. He earned his MD degree at Harvard Medical School and did his pediatric residency at Boston Children's Hospital. He has served on the AAP Colorado board for the past 12 years, and currently serves as the Chapter's President. Ted has been a champion on issues including tobacco control, healthcare finance, and congenital CMV infection. Loving retired life, you can find him hiking, skiing, rock climbing, mountain biking, or doing anything else that involves the outdoors. 1 in 150 children are affected by cCMV, but only 9% of women pregnant or thinking about becoming pregnant have heard about CMV. This is devastating because so many children are born asymptomatic and then later in life have health issues and parents are left wondering why. The medical community believes educating women on CMV is burdensome and puts undue stress on the mother. What about the burden and stress on mothers of children born with cCMV? Education is necessary in the medical community as well so the diagnosis of children is not missed. I hope you enjoy this informative interview with Dr. Maynard. If you'd like more information on cCMV and what is happening in Colorado you can click the link below. I'm so grateful for everything the group is doing. Resource: cCMV information in Colorado Also, one of the mothers of the group, Megan Nix, wrote a book Remedies for Sorrow: An Extraordinary Child, a Secret Kept from Pregnant Women, and a Mother's Pursuit of the Truth. It's a beautifully written book! You can also listen to this short video of her speaking on why she wrote the book: HERE --- Support this podcast: https://podcasters.spotify.com/pod/show/amber-mustain/support
Episode 16 | Ashlynn (Colten's Sister) It's sure hard to get a lot of talking out of a 17 year old at 9:30 in the morning, but I hope you enjoy this short interview with Colten's older sister Ashlynn. She is a blessing to him and us. She loves him so well and is such a wonderful advocate for him. Siblings of children with disabilities and special needs carry the load in different ways and there needs to be support for them as well. Their life looks different than they expected and sometimes it can feel like the world revolves around the sibling with the additional needs. Often times they are left disappointed when they have to leave an event or activity early due to their sibling not being able to handle it. It's important as parents that we recognize these things and try to make time to listen and support them well. I also believe it's important to make one-to-one time and schedule events that you can go to without the other sibling. Sometimes that's difficult though due to the difficulty in finding appropriate child care. It's a hard balance sometimes, but it's important to recognize all the dynamics with a household with a child with disabilities or special needs. Photo credit: Carly Mitchell Photography --- Support this podcast: https://podcasters.spotify.com/pod/show/amber-mustain/support
Episode 15 | Sarah + Brooklyn Every time I put together a podcast episode, I'm so grateful for the people I have met through this journey with Colten. Every single person is truly amazing and a blessing to us! Sarah and I met at a class Children's Hospital offered for 18 months to 3 years old for Deaf and Hard of Hearing children getting ready for preschool. It was a great group of teachers and parents. I loved being a part of the group and we have kept in touch with so many families. Sarah talks us through Brooklyn's journey and how she is raising her daughter culturally deaf. I learned so much from Sarah and I hope you do as well. A couple take-aways that I hadn't thought of for parents raising a deaf child. One, child care is pretty much non-existent. Think about how many providers are fluent in ASL? Second, although Brooklyn has had many great hearing teachers that have taught her with the use of ASL, Sarah has seen the most growth in Brooklyn this year in a class taught by a deaf teacher. Her language has grown tremendously. It just shows how important being connect to the deaf community is for children. I wanted to clarify one of the topics we talked about. I loved how Sarah says her daughter didn't fail her hearing test, she passed her deaf test. Once a child has gone through the new born screening, they are referred to an audiologist for an ABR. An ABR is auditory brainstem response-this shows the doctors and parents how the hearing nerves and brain responds to sound. It is usually a 3 hour test in which the baby needs to be sleeping soundly or sedated if they are older. Sarah is a wealth of knowledge, but her biggest advice for parents, who parent a deaf child, is to connect with deaf adults. She also recommended these resources below: -Deaf Individuals-greatest resource -Influencers on social media: Raven Sutton , Troy Kotsur and Language Priority to name a few -Deaf Organizations: Colorado Association of the Deaf, Colorado School for Deaf and Blind, Rocky Mountain Deaf School -Through the Rocky Mountain Deaf School, they have Youtube resources as well, and one amazing literacy program is with Jenny Jamison Photo: Cali Gale Photography --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app Support this podcast: https://anchor.fm/amber-mustain/support
Episode 14 | Sara Kennedy We first met Sara when Colten was first identified with unilateral hearing loss. She helped guide us through many decisions in the beginning when we were weighing options of equipment and set us up with early intervention. Sara later connected us with families of "Deaf Plus" children- is the reference to the child's hearing status combined with additional conditions. We are so grateful to have met Sara and been a part of Colorado Hands and Voices. Sara is a mom of four children, including a daughter who was late-identified following a homebirth. She enjoyed a career as an occupational therapist, but resigned a year after her daughter was identified so that she could help her with language leaning – and while expecting child number 4. She went to one of the first Hands & Voices conferences in Colorado, and raised her hand as a volunteer to edit their four-page newsletter. She had several volunteer and paid positions in El Paso County and statewide, eventually becoming the Director of the Colorado Chapter of Hands & Voices through last Feb 2022. Today, she continues to edit the Hands & Voices Communicator (now an international newspaper) along with many other activities from grantwriting to training and serves as the Co-Chair of the Colorado Infant Hearing Advisory Committee. Sara has a special interest in practical ideas that close the gap for late-identified kids and their families. She was a lead author of the Parent Safety Toolkit for the O.U.R. Children's Safety Project, a co-creator for the Virtual Waiting Room, coauthor for the manual Bridge to Preschool: Navigating a Successful Transition, past editions of the Colorado Resource Guide and Parent Funding Toolkit, has written or presented on navigating the IEP/IFSP system, siblings, Eight Reasons to Say Yes to EI, why families move, the decision process regarding cochlear implants and transition from high school. A favorite presentation last year was Introverts Can Be Great Leaders. She reads, hikes, refinishes furniture, and skis when she can. Contact her at Sara@handsandvoices.org. Kid Power O.U.R. Children's Safety Project Photo by: Melissa Wuertele Photography --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app Support this podcast: https://anchor.fm/amber-mustain/support
Episode 13 | Joni + Beckham Joni and I met through flowers. She is an amazing artist and florist in Idaho. When we first met, I was interviewing her for a magazine I worked for at that time. We talked mostly about being business owners and moms and how hard that was at times. Somehow we got to talking about of boys and found out they were very similar. She and I do a lot of things the same when it comes to how the boys eat and other natural remedies we use. It was so nice to have a friend that I felt like really understood me. Our friendship has grown over the last 5 years and I'm so grateful for her! Her interview is straight from her heart and gives such wonderful insight into how we can help our kids naturally, but sometimes we need medical intervention as well as God's intervention. I hope you enjoy this interview as much as I did. Resources: Book: Healing the New Childhood Epidemics by Kenneth Bock Supplement: Magnesium --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app Support this podcast: https://anchor.fm/amber-mustain/support
Episode 12 | Brysen I loved having Brysen on the podcast. I believe it's important to share the perspective of dads. Often times it is moms who stay home and shoulder the weight of all the therapies and caring for the child throughout the day. Dads carry a different burden and it's important to recognize. Brysen does an amazing job with Colten, and I'm so thankful to have his support as I do what I do from home. --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app Support this podcast: https://anchor.fm/amber-mustain/support
Episode 11 | Shanyn Hansen Owner of What's the Function? It was such an honor to have Colten's Great Aunt on the podcast. Shanyn has been working with children with disabilities since 1985. She began in the school system as a para for deaf and hard of hearing child and eventually became an RBT (Registered Behavior Therapist) and began working with children on the Autism Spectrum Disorder. She currently owns a business in Virginia called What's the Function? She and her business partner help coach parents on ABA techniques to manage behaviors and can advocate for more services through the state when they see a need. I believe what they are doing is really bridging a gap for so many families and they are helping equipped parents! We talked about the 7 steps to instructional control, which I had not heard of. I believe these steps are important in parenting all children. You can read more about the steps here . --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app Support this podcast: https://anchor.fm/amber-mustain/support
A fun and short episode talking dinosaurs with Colten. I hope it brings a smile to your face. --- Support this podcast: https://anchor.fm/amber-mustain/support
Episode 10 | Sheehan, School Principal I loved talking with Colten's principal. She has a beautiful perspective on welcoming all children into the school just the way they are and she strives to support her staff and build up the children. I have been impressed with everyone in the Special Education department and love working with them to create a successful plan for Colten. It truly is a team effort when you have a child with learning differences and behavior challenges. I hope you all enjoy this episode. Sheehan mentions that her staff is trained in Restorative Practice, which I wish I would've asked more questions about, but here are the questions the teachers are trained to ask when there are behavior challenges: What happened? What were you thinking of at the time? What have you thought about since? Who has been affected by what you have done? In what way have they been affected? What do you think you need to do to make things right? I love how this makes the child slow down, look at what happened, evaluate how they are feeling and how they reacted, and how can they correct the problem and make better choices in the future. --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app Support this podcast: https://anchor.fm/amber-mustain/support
Episode 9 | Becky + Cash "I'm excited that God is laying out the foundation for my future life and I'm following His plan; I'm just sticking to His schedule" Cash 16 years old On this episode, I talk with Becky and Cash. Cash is an amazing 16 year old young man who loves working on planes, building and creating, swimming, hunting, and hiking. He recently won Reserve Champion with his goat at the county fair and has a full-time job helping his Grandpa Bill on the farm. Cash was never formally diagnosed because he didn't meet enough of the markers for autism, but thankfully his mom was introduced to a friend who was an occupational therapist and believed Cash had Sensory Processing Disorder. Due to not having a diagnosis, Cash didn't qualify for formal intervention, but Becky's friend gave her exercises to do with Cash. They created an environment at home that would help Cash to be successful outside of the home. Becky has homeschooled Cash the entire time and it has really helped him to learn in ways that work best for him. I hope you will enjoy this episode, and if you're in the beginning years of working with your child, Becky wants to encourage you, that your hard work will pay off and things will get easier. --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app Support this podcast: https://anchor.fm/amber-mustain/support
Episode 8 | Jen Hills | MS Deaf Education, BCBA, PhD student of Special Education with emphasis in deafness and autism I know I say it every week, but I am truly excited every time I have a guest on. I appreciate everyone's time and unique story! Jen Hills has been a big part of our lives since Colten's pre-school days. She was his Deaf+ teacher and helped us to find Sheri at Springs Learning Community for Colten's ABA after his autism diagnosis. Jen was also an advocate for us when we struggled during Colten's Kindergarten year to get the services and accommodations he needed. She has a huge heart and loves kids! She strives to make life amazing for multiple underserved groups of children. She is currently a doctoral student in special education at the University of Northern Colorado with research interests in Deafness and autism. Her hope is to create a school that serves Deaf autistic children. Currently, she is working at Springs Learning Community building a program for children who are Deaf with autism and other disabilities. Springs Learning has hired Deaf adults and other therapists proficient in ASL to work with their clients. This allows for clients to be immersed in ASL and Deaf culture while learning new skills through applied behavior analysis in a natural and play-based learning environment. I hope you enjoy Jen as much as I do! She is full of knowledge and is amazing resource for parents and really anyone interested in learning more about the deaf/autistic community. --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app Support this podcast: https://anchor.fm/amber-mustain/support
Episode 7 | Christina Jones | Teacher of the Deaf with Masters in Special Education and Deaf Education Mrs. Jones is Colten's Teacher of the Deaf. He adores her--he also keeps her on her toes! I was so happy to have her on to talk about what she does as a teacher and how parents can work with schools to get what they need for their children. Mrs. Jones is an amazing advocate for her students, but her powers can be limited sometimes. Parents must educate themselves on what their child needs and work with the school to gain those accommodations. The process can sometimes be hard and overwhelming and an advocate is a great resource for parents. A couple of parent advocate programs we recommend are: Hands and Voices The Arc --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app Support this podcast: https://anchor.fm/amber-mustain/support
Episode 6 | Christina Jones + Family (We had a rough connection for a bit at first, please hang with us, it does clear up.) I'm so grateful for the time I was able to talk with Christina. She and her wife have fostered 15 children and adopted 2. The boys they have adopted have several diagnosis between the two of them. We mainly spoke today about FASD (Fetal Alcohol Spectrum Disorders). FASD can be hard to diagnose because it looks like lots of other diagnoses. Christina talks about some ways to tell the difference and resources that have helped their family. We talked about how having children with impulse control can be very exhausting for the caretakers. It's a 24/7 job and we have to find ways to take care of ourselves. Working out and finding reliable respite care are two things we talked about. I hope you enjoy learning more about FASD. Resources: The Resource Exchange https://www.instagram.com/eileen.devine_brain.first/ https://www.instagram.com/fasdunited/ https://www.instagram.com/shannon.iacobacci/ https://www.facebook.com/fasdfamilies --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app Support this podcast: https://anchor.fm/amber-mustain/support
In this week's episode, I talk to my friend Erin. She and I met several years ago because we are both wedding florists. We were talking about how "busy" our boys were and found out they were very similar. Her son, Bryce, was diagnosed when he was three with Sensory Processing Disorder. I hope you enjoy listening to our conversation. Books that helped Erin through this journey: The Highly Sensitive Child No-Drama Discipline The Highly Intuitive Child Raising a Sensory Smart Child Freeing Your Child from Anxiety --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app Support this podcast: https://anchor.fm/amber-mustain/support
Episode 4 | Heather Matheny I met Heather about 10 years ago. We both love nutrition and formed a lasting friendship. I'm so thankful for her expertise and knowledge that she brings to families. I hope you will enjoy this episode as we talk about nutrition, gut/brain connection, ABA, and much more! Heather holds a Bachelor's Degree in Psychology from Mercyhurst University and an Education Specialist Degree (Ed.S.) in School Psychology from University of Colorado at Denver in which she is licensed ages birth to 21. Heather obtained her certification in Applied Behavior Analysis from the accredited programs at Florida Institute of Technology; she had been practicing & was trained in principles of behavior analysis under supervision years prior to completion of her BCBA certification. She maintains current status as a Board Certified Behavior Analyst (BCBA) & Nationally Certified School Psychologist. Throughout her career, Heather has developed behavior change interventions for staff, teachers, parents and children with disabilities. Heather is certified in ADOS (Autism Diagnostic Observation Schedule) and STAT (Screening Tool for Autism Spectrum Disorders in Toddlers). Heather's experience includes 10+ years of practice with children, families and schools. Former work includes clinic work, private practice and in public schools developing and supporting autism program development, behavioral change, and staff; including direct intervention work with students with Social-Emotional/Behavioral and Autism Spectrum Disabilities. Heather was initially trained in The Denver Model and Natural Environment Teaching, Discrete Trial Training, TEACCH; more recently over the past 3 years her area of emphasis has been in Verbal Behavior. The majority of her practice involves Verbal Behavior Training within the Natural Environment utilizing materials within the child's environment, MOs (motivational operations) and the fundamental principles of behavior within a developmental scope. To get more information on therapy options or nutritional help you can look at her website or email her: Peak Interventions Or email her at Heather@peakinterventions.com --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app Support this podcast: https://anchor.fm/amber-mustain/support
Lacey and Isla | Welcome to Episode 3. I was so excited to talk with Lacey. We have known each other for 4 years because our children go to the same ABA clinic Springs Learning Community. Isla is a spunky 8 year old little girl who loves playing with her friends, swimming and dressing up with makeup. Isla was born deaf. When she was born, her family lived in Alabama and did not have access to many resources. They moved to Colorado shortly after and was so grateful for the resources Colorado Springs provided. At 15 months old, she had a cochlear implant surgery. She did well with them for a while, but at about 3.5 years old she was having a really difficult time and her parents were referred to Children's hospital for an evaluation. After the evaluation, it was determined that Isla was autistic. This began a new journey for her and her parents. Join me as Lacey gives a little peek into the last 8 years of Isla's life. Resources that helped Isla and her family: The Resource Exchange The Arc- Advocacy Peak with District 49 Disclaimer: The views and opinions expressed in this podcast are those of the guests and do not necessarily reflect the views or positions of the Wait and See Podcast employees. The information provided is for educational purposes only, and does not substitute professional medical advice or consultations with healthcare professionals. --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app Support this podcast: https://anchor.fm/amber-mustain/support
Episode 2 | Meet Jami Jami is the mom of two boys in Northern Colorado. Her youngest, Nathan, was born premature at 34 weeks with a virus called congenital Cytomegalovirus (cCMV). After he lost his hearing from the virus she started working with Colorado Hands & Voices as a Parent Guide, to guide new parents through the hearing journey. Today she is the Director of Colorado Hands and Voices and an advocate for cCMV education and awareness. She works alongside multiple organizations to attempt to change how cCMV is viewed, diagnosed and treated in the state of Colorado. I hope you enjoy this episode and learn more about cCMV and how to educate and protect yourself if you're in your childbearing years. Resources for education: Contact Jami directly cCMV@co-hv.org Colorado Hands and Voices www.co-hv.org American Academy of Pediatrics (Colorado) www.aapcolorado.org National CMV www.natuonalcmv.org --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app Support this podcast: https://anchor.fm/amber-mustain/support
Hi! Thank you for joining me for Episode 1. I'm so excited to talk about our family's journey and what this podcast is about! --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app Support this podcast: https://anchor.fm/amber-mustain/support
Welcome to Wait and See. A podcast for sharing stories of families with amazing children with special powers. We will talk to families and professionals of special needs children. We hope you will be encouraged and find support within our community! --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app Support this podcast: https://anchor.fm/amber-mustain/support