The Unexpected Path: Navigating the steps after a new diagnosis
Helping your child, finding your footing, and moving forward
By: Bailey Carmack
Start
What is this course about?
You have a new diagnosis in your family. It's not what you planned for, and you may have more questions now than you did before, but what comes next? How can you find your place in this new world that you didn't expect to be in? This course is for parents who are looking for ways to move forward when the unexpected and sometimes the unthinkable happens in your family.
Give yourself TIME.
Time to process, time to accept, and time to grieve. You likely did not expect this life/diagnosis, and it takes time to adjust when big changes come into our lives. This is nothing to feel guilty about or ashamed of. There is no set amount of time that will guarantee you're ready to move on; everyone is different and on their own path.
My Story
When our son Liam was born, there were some minor abnormalities that we didn't think too much about. It wasn't until he was 8 months old and not able to sit up that we started getting more concerned, and this led to the start of ECI for physical therapy. As time went on, it became clear to us and his doctor that there may be more going on, so we decided to get him tested with a microarray. He was around 10 months old when the results came back-- he had a significant chromosome abnormality that was pretty rare; it didn't have a name other than what it was-- Chromosome 18 p deletion. A large part of the short arm of his 18th chromosome is missing, and this would cause issues for him all his life, but we didn't know how much or how soon. We were devastated. What did this mean for us now?
I can't say exactly how long it took for us to process, accept, and grieve the news because I can't pinpoint a single moment in time when it stopped hurting so much. I do know that it took a while, and it took a lot of nights wondering about all of the unknowns. Would he ever walk? Would he talk? Would he be in general education classes? Would he be independent someday? No one could answer those questions for us, and so eventually, we learned to take it one day at a time. Put one foot in front of the other, and learn how best to help Liam do the same. Eventually, after the pain and shock was less intrusive and we knew were doing what we could for him, it was time to connect with others.
We had to come to terms with the fact that this was not a life we expected, and that was okay. Our perspective started to change.
Next
This is a quote from Rick Guidotti with Positive Exposure, a great organization you should look into!
Make Connections
When you've given yourself time and grace to move forward, it's time to make connections. These connections include the appropriate doctors, programs, and families that are like you.
First, connect with professionals that can help.
When you notice the delays and medical needs that your child has, it's time to get connected to the right professionals. Early intervention can make a HUGE difference. After discussing with your child's pediatrician, make the calls and inquiries about any type of doctor they recommend as soon as you can-- these doctors may be booked up for awhile, so you will want to get in their system ASAP. Keep any diagnoses and other documentation on hand for when you may need it (for school or other programs.) Tip: Find a place to store this information that is easily accessible for you and your spouse. For us, we have a shared note in our phones where we log all of Liam's doctors, visit info, and questions that we don't want to forget!
When Liam was 5 years old, I finally got him on a couple of waitlists for services (CLASS and HCS-- Community Living Assistance and Support Services, and Home & Community-based Services.) It is a process that you go through and it takes time, but the waitlists are LONG-- the HCS waitlist was 15-20 years long when we signed him up. They will check in with you every year or two to see if you still want to remain on the list, so make sure to stay in contact with them.
We live in Texas, and unfortunately, Texas is ranked 49th out of 50 when it comes to providing support to special people like our son. I did not realize this until we were well into our journey, and I really wish I had made some calls sooner than I did. Reach out to your local and state disability services and get on any lists that you can.
Second: Depending on where you live, it is essential that you get on support waitlists ASAP!!
Finally, connect with organizations that focus on the diagnosis.
For us, we did some research and found out that there was a Chromosome 18 Registry and Research society that just happened to be headquartered in San Antonio, just a roadtrip away from us. We were able to get added to the registry, sign up for many events over the years, get the monthly newsletter with helpful info, and make meaningful connections with families like ours. Do some research and find an organization that focuses on what your family is experiencing!
Don't forget to care for YOU.
It's so easy to get caught up in what your child needs, but you can't pour into someone else when your own cup is empty.
It took me a while to see that I needed to take care of myself before I could be the best mom that I could be.
The guilt, the busy-ness, the therapies, the grief, the exhaustion, and just dealing with his behaviors.... it was a lot, but I felt bad for reaching out for help. I felt like I should be able to handle what was given to me, so I'd need to suck it up and make it work. But this was leaving me...
- Drained
- Emotionally unstable
- Physically exhausted
- Unhappy with life
- Terrified of the future
Below is a retreat that focuses all on the mothers of special needs kids in the fall, and they do a great job! Check them out.
Eventually, I made some changes in my routine. I asked grandparents to help more and even my sisters; I got massages more regularly when I needed them; I made more connections with friends who understood; I talked to my doctor about it all and she helped me move forward with a plan.
Self-care is not selfish; it is essential to survival, especially for special needs parents.
- Asked for babysitting help from any family member able to do so. We also hired one of Liam's paraprofessionals to babysit sometimes.
- Took trips with just my husband and our daughter (this was helpful for us to all take a break, have some one on one time with her, and let Liam stay home where he loved it most)
- Occasionally hire someone to deep clean the house.
- Found a group of women that get it-- Labeled and Loved-- and go to those retreats when possible.
- Changed jobs to something less stressful and exhausting, which meant working from home.
- Found an avenue that helps me and helps others (my writing)
Here are some other things I did that helped the most--
Here is my where I post my own writing about our life-- connect with me and others that help you know you're not alone!
The point is this: do what works for you. Make sure you are taking care of yourself and whatever that may look like for you.
Assessment
Answer a few questions to make sure you've been tracking.
To sum up, always remember to: Give yourself time to process and grieve. Connect with helpful resources and loving people. Take care of yourself before you take care of others. Soon, you will start to see the world in a new way that you never imagined thanks to the special kiddo in your life.
Change how you see; see how you change.
--Rick Guidotti from Positive Exposure
Thank you for your time.
I am here to help if you have any questions. You and your child are going to do amazing things. Please reach out to me at baileycarmack@me.com. Thank you for taking the course, and know that you are loved and supported and NOT alone!
The Unexpected Path: Navigating the steps after a new diagnosis
Bailey Carmack
Created on October 17, 2025
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Transcript
The Unexpected Path: Navigating the steps after a new diagnosis
Helping your child, finding your footing, and moving forward
By: Bailey Carmack
Start
What is this course about?
You have a new diagnosis in your family. It's not what you planned for, and you may have more questions now than you did before, but what comes next? How can you find your place in this new world that you didn't expect to be in? This course is for parents who are looking for ways to move forward when the unexpected and sometimes the unthinkable happens in your family.
Give yourself TIME.
Time to process, time to accept, and time to grieve. You likely did not expect this life/diagnosis, and it takes time to adjust when big changes come into our lives. This is nothing to feel guilty about or ashamed of. There is no set amount of time that will guarantee you're ready to move on; everyone is different and on their own path.
My Story
When our son Liam was born, there were some minor abnormalities that we didn't think too much about. It wasn't until he was 8 months old and not able to sit up that we started getting more concerned, and this led to the start of ECI for physical therapy. As time went on, it became clear to us and his doctor that there may be more going on, so we decided to get him tested with a microarray. He was around 10 months old when the results came back-- he had a significant chromosome abnormality that was pretty rare; it didn't have a name other than what it was-- Chromosome 18 p deletion. A large part of the short arm of his 18th chromosome is missing, and this would cause issues for him all his life, but we didn't know how much or how soon. We were devastated. What did this mean for us now?
I can't say exactly how long it took for us to process, accept, and grieve the news because I can't pinpoint a single moment in time when it stopped hurting so much. I do know that it took a while, and it took a lot of nights wondering about all of the unknowns. Would he ever walk? Would he talk? Would he be in general education classes? Would he be independent someday? No one could answer those questions for us, and so eventually, we learned to take it one day at a time. Put one foot in front of the other, and learn how best to help Liam do the same. Eventually, after the pain and shock was less intrusive and we knew were doing what we could for him, it was time to connect with others.
We had to come to terms with the fact that this was not a life we expected, and that was okay. Our perspective started to change.
Next
This is a quote from Rick Guidotti with Positive Exposure, a great organization you should look into!
Make Connections
When you've given yourself time and grace to move forward, it's time to make connections. These connections include the appropriate doctors, programs, and families that are like you.
First, connect with professionals that can help.
When you notice the delays and medical needs that your child has, it's time to get connected to the right professionals. Early intervention can make a HUGE difference. After discussing with your child's pediatrician, make the calls and inquiries about any type of doctor they recommend as soon as you can-- these doctors may be booked up for awhile, so you will want to get in their system ASAP. Keep any diagnoses and other documentation on hand for when you may need it (for school or other programs.) Tip: Find a place to store this information that is easily accessible for you and your spouse. For us, we have a shared note in our phones where we log all of Liam's doctors, visit info, and questions that we don't want to forget!
When Liam was 5 years old, I finally got him on a couple of waitlists for services (CLASS and HCS-- Community Living Assistance and Support Services, and Home & Community-based Services.) It is a process that you go through and it takes time, but the waitlists are LONG-- the HCS waitlist was 15-20 years long when we signed him up. They will check in with you every year or two to see if you still want to remain on the list, so make sure to stay in contact with them.
We live in Texas, and unfortunately, Texas is ranked 49th out of 50 when it comes to providing support to special people like our son. I did not realize this until we were well into our journey, and I really wish I had made some calls sooner than I did. Reach out to your local and state disability services and get on any lists that you can.
Second: Depending on where you live, it is essential that you get on support waitlists ASAP!!
Finally, connect with organizations that focus on the diagnosis.
For us, we did some research and found out that there was a Chromosome 18 Registry and Research society that just happened to be headquartered in San Antonio, just a roadtrip away from us. We were able to get added to the registry, sign up for many events over the years, get the monthly newsletter with helpful info, and make meaningful connections with families like ours. Do some research and find an organization that focuses on what your family is experiencing!
Don't forget to care for YOU.
It's so easy to get caught up in what your child needs, but you can't pour into someone else when your own cup is empty.
It took me a while to see that I needed to take care of myself before I could be the best mom that I could be.
The guilt, the busy-ness, the therapies, the grief, the exhaustion, and just dealing with his behaviors.... it was a lot, but I felt bad for reaching out for help. I felt like I should be able to handle what was given to me, so I'd need to suck it up and make it work. But this was leaving me...
Below is a retreat that focuses all on the mothers of special needs kids in the fall, and they do a great job! Check them out.
Eventually, I made some changes in my routine. I asked grandparents to help more and even my sisters; I got massages more regularly when I needed them; I made more connections with friends who understood; I talked to my doctor about it all and she helped me move forward with a plan.
Self-care is not selfish; it is essential to survival, especially for special needs parents.
Here are some other things I did that helped the most--
Here is my where I post my own writing about our life-- connect with me and others that help you know you're not alone!
The point is this: do what works for you. Make sure you are taking care of yourself and whatever that may look like for you.
Assessment
Answer a few questions to make sure you've been tracking.
To sum up, always remember to: Give yourself time to process and grieve. Connect with helpful resources and loving people. Take care of yourself before you take care of others. Soon, you will start to see the world in a new way that you never imagined thanks to the special kiddo in your life.
Change how you see; see how you change.
--Rick Guidotti from Positive Exposure
Thank you for your time.
I am here to help if you have any questions. You and your child are going to do amazing things. Please reach out to me at baileycarmack@me.com. Thank you for taking the course, and know that you are loved and supported and NOT alone!