More Alike Than Different Podcast- Episode 3
Finding Your Medical Village
Do you have a medical village? You should grow one!
My Son’s First Doctors
I had just had a crazy delivery. I’m trying to bond with my new baby. And, in walks my family doctor to check on the baby. He seems disgusted by my newborn. At least, that is my perception of the situation. He calls for his partner and they discuss my child. They return to me and suggest I have a follow up with a brand new doctor in the practice. Before seeing the family doctor, I have a children’s hospital appointment with the Down syndrome clinic just 5 days after birth. If you know me, you know how much I can go into research mode and study like crazy until I have more knowledge. I say it all the time that knowledge is power. In order to build wisdom, you have to build knowledge and real-world experiences. As soon as I was home, I looked up local DS groups, basic DS knowledge, and I ordered some books about DS. You can read about my initial outreach experience in an article I wrote about how important that interaction with the local Down Syndrome Association was to me on The Mighty.
Here is my disclaimer. I am not a medical doctor or professional. I don’t even play one on tv. The following statements are based off my personal experiences and loads of late-night research on my end. I may state some things as facts or advice. But, consult your own licensed medical professional before action on any of my comments. Alright, that better take care of liability towards you. Because, I have enough being liable for myself.
Now with limited basic knowledge about DS I head to the local children’s hospital. My feet were so swollen. I was so worried I would get lost. (I can get lost in my hometown. Seriously, I am horrible with directions.) Luckily, hubby drove, and we went to our very first Children’s hospital visit. I am so happy that this DS clinic has phenomenal drs and nurse practitioners. They explain to us about the different types of DS. Which type our son has based off the DNA results? They also tell us it’s not our fault our baby has DS. They give me more information about the special growth chart for those children with DS. I felt so much better knowing that he had a team of specialists following his development. We had much to do and follow up on before his 6 month appointment.
Finding a Pediatrician
I went to the family doctor for my son’s 1-week checkup. The new doctor was really nice and I liked her. She told me about his growth and I asked her if that was on the Down syndrome growth chart or the regular child growth chart. She told me she did not know what I meant. Now, when you are a new mom to a child with disabilities you probably do not want a doctor who is new to treating your child’s disabilities or conditions. I left that visit feeling very low. I knew I needed a pediatrician with experience with Down syndrome. It’s one of those things in life when you need some one with a lot more experience to help guide you. I reached out to all of my young mom friends and asked which pediatrician they used for their children. I called a few offices to see if they would “take” my son. Let me tell you how emotional it is to call places asking if they will accept your child! It is so …. I can’t even put it into words. You feel sub human- less than human. You feel like a burden to others. I am much farther along in my walk with being a parent of a child with disabilities. So, I have grown out of some of these feelings. But, there is still a tinge every once in a while. I can’t comment for guys, because I don’t have that experience. But, for me it’s similar to that insecure teenage girl voice in my head telling me I’m not good enough, no likes me, this list goes on. Back to my search for a pediatrician who will serve as an important piece in my medical village. I call one doctor office and they ask if I would like to meet with the doctor to before becoming a patient. So strange, right? Interviewing a doctor. I took my dad with me. He was very good at this kind of stuff. So, I take my kiddos and the staff gives me tour and I get a one-on-one consultation with the pediatrician. He was so welcoming, and I can tell how much he cares about children. I ask him some sneaky questions to see what he knows about Down syndrome. It turns out he had done a residency in a Down syndrome clinic in another state. Wow! This poor doctor did not know what he was in for! I was so happy to find someone with knowledge and caring. Did I mention he listens too! He always listens to my concerns no matter how unwarranted they were/are. Like, I have gone a little wild with some of my concerns. When we started having lots of medical issues, he gave me his personal cell phone number to call. I have woken this man and his wonderful wife up a few too many nights due to emergencies. Yeah, I have the wife’s cell phone number too. That is the kind of people they are! We are so lucky to have found them! I can not tell you how important it is to have a caring, listening, and knowledgeable pediatrician if you have a child with disabilities. The pediatrician is responsible for overall care. He reads all the specialist reports and treats the whole child. Last time I counted, my son had 16 specialists. Uh huh, 16. You are going to need at least one core specialist in your village too. My core specialist is from the DS clinic. Yours may be different.
Part C to Part B
Now, you have your pediatrician and your core specialist on board. You need to look into programs in your State’s IDEA Part C. It is a federal law and every state should have early intervention services. Ok, I may get on my soap box here because I am so passionate about early intervention. Before I had children, I was a special education pre-k teacher. I studied child development. I understand how crucial the first 3 years of life are to a child. Their brain grows exponentially in those first 3 years. Your Part C program will cover birth to 3 year olds. Please, get an evaluation as soon as possible. These services will only benefit you and your family. I know that some people do not want a “diagnosis”. I understand how hard that is. I truly do. I try to look at the diagnosis as the paperwork need to get the help my child needs. It stings. I know. It is important to do what is right for your child even if it stings. Yeah, parenthood is no joke. So, depending on the evaluation, they Part C doctor may recommend physical therapy, speech and language therapy, and/or occupational therapy and/or an early childhood educator. We are so lucky that we needed all three. Now, physical therapy is usually the first therapy to come out to see the baby. Speech and OT will come in a few months. The ECE can start early on to help build development skills. I will talk more in depth on activities and games you can play to enhance the baby’s development on another episode. We are concentrating on building our medical village today.
If you have a baby with hypotonia, cerebral palsy, Down syndrome and more, PT should start as soon as you can. Hypotonia is a medial term that means the baby has lower muscle tone that a neurotypical baby. Torticollis is another condition that can have permanent impact if not treated. It is when the muscles in the neck are asymmetrical. The physical therapist can show you really neat exercises and stretches to fix torticollis. As, your baby gets older, the goals will naturally change, holding the head up, sitting up -increasing core muscles-trunk control, crawling, walking, steps, hopping…. You get the idea. It is vital that I tell you to NOT compare your child’s growth with other children. Who said comparison is the stealer of joy. I know I messed that up. But, trust me! Do not follow that path. Now, others can help you with tricks and techniques to get through a skill. But, do not compare.
Speech and Language Pathologists do much more than just speech. They work on oral muscles and motor movements. They can provide oral feeding services too. Sometimes they have to work through sensory issues too.
The OT works on fine motor skills and sensory processing. So, working on pincher grasps, stacking, finger isolation, and so on. The OT usually works on independent life skills too like self-dressing, cooking, writing, etc. They work on sensory processing.
Social Media Groups
Another thing that has helped me immensely is joining specific groups on social media platforms. I have learned so much from other parents and medical professionals in these groups. I have done a lot of online research too. You can find some factual YouTube videos too. Please use reputable sites with accurate information. There is a lot of false info on the web. So, watch out for that.
Now that we have reviewed the beginning of a medical village you may be feeling overwhelmed. Or, maybe you are beyond this stage and you have been recalling all the steps, phone calls, emails, visits you had to go through just to set up this village. It’s like juggling water. I know. It is overwhelming. Your child needs you to be their personal assistant which takes a lot of effort. When you have 7 therapies in your home during a week time frame, it feels like that is all life is about. I like to take breaks from therapy every once in awhile which allows the family a breather and helps reset us. Sometimes, it helps level up some skills too.
As always, you can purchase my book More Alike Than Different… A Down Syndrome Tale wherever books are sold.