When I first started on the road of being a mom of a child with autism and epilepsy, I was a fish out of water. I had no preparation or warning and not a clue of how to be the mom I needed to be for my daughter who obviously needed so much care. Out of desperation, I turned to every single place I could possibly think of to find answers. I came up pretty short and was shocked that something so well-known as autism or epilepsy had so few resources for people trying to make sense of it all. Doctors, specialists, friends, and family all had their value, but the place I found the most help was from other parents who had gone through the same or similar journey as me.
When Remy first started having seizures, I was shocked that the “so-called” professionals had no real answers. When we left the hospital and I pleaded with the doctors and nurses to “PLEASE tell me what to do next” they all shrugged their shoulders and said, “I’m not really sure, just come back to the hospital if you need to.”
My Search To Find An Answer To my Child’s Diagnosis
Luckily for me, I was able to connect with the most amazing people in this new world of parenting that helped show me every step of the way. This was so incredibly valuable to meet other parents and see what they have done, but I wished there was a place to go that could dive deeper into some of these topics.
I wished that there was a podcast, blog, website, school any place that I could go and be able to get information about all the things we as special needs parents need and want to know. How to get the right services for my daughter, what available services are out there, what research has been done for autism, what drugs do what for seizures, why isn’t my daughter talking yet, why does she wake up 8 times a night, what do I do during a meltdown, how will I ever take my child out in public without her running away, can my child go to school and if so, what does that look like?
I also struggled with my own health. I found that I wasn’t eating right, I wasn’t getting any sleep, never being able to leave my daughter to have a few minutes alone with my husband or other children. I was depressed, angry, stressed, and overwhelmed. My friendships were suffering, I was in over my head, and in complete and total agony.
Why I Am Starting A Podcast
I am starting this podcast because I was given this incredible journey. It hasn’t been easy. It actually has been like going through hell. But with the amount of growth that has taken place inside of me in these 5 years of raising Remy, I HAVE to share what I have learned for other parents who are starting this journey too.
I want all of you to know that if you don’t know what you are doing, if you feel like you were dealt a bad hand, if you wish you knew how to be one of those kick-ass parents, you will. It takes a lot of self-reflection, and a willingness to learn but it’s possible and necessary.
What My Daughter Has Taught Me About Special Needs Parenting
Your child was no accident. Your child was made in the image of God and is here on this planet to change the world. Even if you don’t feel this way, you were meant to be their parent and you have the privilege and burden of raising that child and helping to make this planet more conscious.
If you don’t believe me, look around you at all the people your child has already touched and affected. Look at how much this little person has given people a reason to be better. THAT’S an incredible purpose.
My daughter Remy is 5. She is on the spectrum and suffers from a seizure disorder called PCDH19. She has had thousands of seizures and has affected every area of life for everyone around her. She requires 1:1 attention at all times and while it’s oh so challenging, Remy is a world changer and I am blessed beyond measure to be able to be her mother. She has this sunshine that beams from inside her. She is the most resilient person I have ever met and in her world, there’s absolutely not a cloud in her sky.
For this reason, I know that she was brought into my life as my spiritual teacher. She has taught me about compassion, appreciation, gratitude, and living in the moment. I am stronger, braver, and a more evolved parent because of what she has taught me and I can’t wait to share those lessons with you. We are going to have an amazing adventure together!
- Having your child was not an accident. God gave you your child exactly the way they are and He has made you their parent for a reason. Raising a child with special needs is a huge responsibility and also a huge privilege because you have the opportunity to change the way that the world sees people with special needs.
- It’s okay that you don’t know what you are doing. It takes self-reflection and a willingness to learn, but you have the ability to be an amazing parent to your child! It takes time, but you will get there.
- The place I found the most help was from other parents who had gone through the same or similar journey as me. It is so so helpful to learn and to hear from other families that have experienced the same thing that we were going through.
- We cannot be in control of everything. I tried to study and do a lot of research, I ran through every scenario in my head, and we tried to cover all angles for Remy’s seizure protocol, but at the end of the day, there is only so much we can do. What happens in my daughter’s life is in God’s hands.
- You are stronger than you ever knew and more resilient than you ever thought possible. There is a huge world of life that teachers or books could never have taught you about in the world of special needs parents. So, remember that you were not cursed, you were blessed!