One of the loveliest and most informative blogs I regularly visit is called Marla Baltes On All That Is Dazlious. Marla describes her blog as a place to share her photography, insights, joys and struggles, especially as they relate to her ten year old daughter, Maizie. Being an adoptive mom myself to a daughter with special needs, I can so relate to Marla’s writing and the life moments she shares. So, thank you, Marla, for sharing your thoughts with us all in the following interview. You are an inspiration to me and to many others, I am sure.
Marla, tell me a little about yourself and your family.
My name is Marla Baltes and I am thirty five years old. I live with my husband Joe and my daughter Maizie who is ten. We have two dogs, Darwin and Stella, a couple of guinea pigs and a few fish. I was born and raised in Cedar Rapids, Iowa and I currently live in Indiana.
Tell me more about your daughter, Maizie’s disability. Did you know when you adopted her that she had a disability? If not, how did you feel when you discovered it?
When we brought Maizie home from the hospital she was a day old. The birth mother was known to have learning difficulties and various health conditions. It was our understanding through interviewing three pediatricians that Maizie would more than likely be born healthy. No matter what we wanted to move forward with the adoption.
Between hours of crying, pain, behavioral issues, developmental concerns and regression issues Maize appeared quite normal and was a very outgoing and friendly child. We were constantly fighting for doctors to understand and tell us what was going on.
Maizie was nine years old when we finally discovered that she was born with an extra chromosome (Trisomy 6p6-25.3). This backed up all of our concerns and explains why Maizie does not fit any one diagnosis clearly. It explains why she is more likely to become sick easily, struggle to learn, have behavioral issues and struggle with ongoing muscle weakness, pain, and various health abnormalities.
Maizie’s Autism was assumed early on but was also debated by several doctors. This was very frustrating. It took visiting the Cleveland Clinic in Ohio to finally get a diagnosis of Autism at the age of nine, along with her chromosome disorder.
At the age of ten Maizie was diagnosed with Cyclical Vomiting Syndrome and possible seizure activity. Her chromosome disorder makes her CVS present itself differently in Maizie and it seems to resist treatment.
With each diagnosis we feel relieved and yet confusion quickly follows. Sadness and fear that there is something we are overlooking is constant. More than anything we want Maizie to feel healthy and happy.
You blog a lot about Maizie’s issues and that is so valuable to me and I’m sure, to others that read your blog. How did you go about making the decision to blog about Maizie? What do you personally get out of blogging about her and her issues?
I began blogging with the intention of being able to add some creativity into my days. I am an artist/photographer and yet finding time to be creative is difficult when you are caring for a chronically ill and Autistic child. I love technology and enjoy working with Photoshop every day. Blogging is one way to keep me learning and reach out to others in similar situations. People responded when I share what Maizie and I are up to. They are inspired by our experiences and that keeps me moving forward with it.
I was unaware of the controversy surrounding Autism when I began blogging and at first that scared me. Not everyone is kind and I do worry about Maizie’s privacy. I talk about my blogging with Maizie and share my posts with her. She has her own private blog and understands the good feelings and great friends that come from blogging. I put a lot of thought into what I choose to share and Maizie’s opinions in that area are very important to me.
What is a typical day like for you and your family?
Since leaving the public school system and homeschooling our days have changed considerably. If Maizie is going to have a CVS episode it tends to happen in the morning. Most mornings she requires a nap. We usually don’t do much until after lunch. The bright sun is painful to Maizie so we often stay in on many days. School work is completed in about an hour. I do sneak in lots of learning adventures throughout the week whenever I can. Meeting up with friends and family in the evenings is very important to us. We don’t participate in any activities yet and keep things as low key as possible. Joe works from home often so I am able to get a break when I need one. Joe takes a very active role in caring for and teaching Maizie. When he travels Maizie and I go out to eat and enjoy play dates. Our pets take up a great deal of our time and are very important to our family. Maizie is usually in bed by nine. Joe and I are notorious for staying up very late and watching movies together or playing on our lap tops.
How has Maizie’s disability affected you as a person and as a mother? What did you do right? What do you wish you had done differently?
Maizie’s disability has made me a much stronger, patient and compassionate person. And yet, her constant health concerns and our daily stressors have wrecked havoc on my health. I take responsibility for this happening and am working to improve how I handle this ongoing stress.
One thing I have done right is when doctors doubt me or belittle me and insisted I was the one who needed help I fired them and moved on quickly. When they gave me barbaric advice on helping Maizie or treat her poorly I fired them and let them know why. I don’t beat myself up for it. We work hard to pay for Maizie’s medical and/or educational help. My child is complicated and she deserves respect and so do I.
The one thing I would do differently is take more time for myself. It is imperative to have fun. I struggle a lot with balancing time for myself.
What do you want other parents fighting the same fight to know?
Your child is perfect just as they are right this very minute. Work very hard towards making progress but accept your child’s individual strengths and weaknesses.
Is there anything else you would like to share?
*Having a positive attitude can make or break your day.
*If you are depressed get help and don’t be ashamed of doing so.
*Be compassionate of other parents’ choices and accept that not all children with disabilities are the same or will benefit from the same therapies or schooling. *Make choices in treatments/therapies and yet do not be afraid to back up and take a different path.
*There are no easy answers and there are no cures. If someone offers you a cure for a price…run and don’t look back.
*Most importantly, let your child be a child.
*Have lots of free time for playing.
*Enjoy life and let your child do the same.
*Accept and appreciate that what your child enjoys may be different from what you enjoy!