Let’s face it, moving to a new state with any child is not an easy task. Moving with a child that may have more medical needs should be considered your full time job for the first six months.
The absolute worse part about moving has been establishing medical care for my children. I had to research the internet to attempt to find a pediatrician, call insurance, and get that place listed as their primary care.
From there it took an hour on the phone to get them all into the system at the pediatrician’s office and all set up for their next appointments. For most of my children, this is just a wellness appointment. But for one, an appointment was needed much earlier to establish care.
The Start
In Arizona we had a pediatrician that we loved. I trusted her, she knew us, we had a good working relationship. I also had fought like Hell to get my daughter care that she needed. See most people turn you away when they are little. Kids have to be a “certain age” to be considered for resources like Therapy. I knew she needed more than what I was giving her though, so I kept pushing.
Finally I was able to get her into a therapist. From there we quickly delved into the world of occupational therapy. OT is another nightmare logistically. It can take months to get in on a regular schedule and then you are going once or twice a week for who knows how long. There isn’t a set “end point” just when they are meeting their goals. But with growing and developing kids- those goals are literally always changing and shifting. Frequent evaluations help keep them on track.
After months we finally had an OT that we loved and whom developed a really special bond with my child. We went once a week, it was a pain, but it was working. Meanwhile other medical issues developed that we were starting to delve into with the help of the pediatrician. And an orthopedic issue found shortly after birth is still on the table for annual evaluations.
Back to where we started
For some reason, moving wipes all that away. Nothing transfers. You end up starting from square zero all over again. Step one find a pediatrian. Step two, get in for an appointment. Step three, at that appointment, try to convince the pediatrician that your child needs these specialist. Step four, repeat all the tests and exams the pediatrician requires to believe that your child needs these specialists.
I have spent the last month begging for a referral to OT. Finally, I received one. Immediately called the next day, was told it was going to be anywhere from a 1 to 6 month wait for her to get on the schedule. At this point, I’m just praying we get in within the six month time frame.
Therapy is an entirely new battle yet again. She is “older” but still most people don’t treat people as young as her. I spent hours one day trying to find child therapists and found exactly two. One online, one in person. Called both. It has been a month and the online one continues to tell me “they are actively seeking care for her”. I won’t hold my breath. The in person one actually DOESN’T see children but oh wait they might have this one guy that does that only does online. At this point- I’ll probably be calling them back. Maybe they will get me in sooner.
Meanwhile we are still picking away at the physical stuff. Orthopedics, urology, gastroenterology. One at a time waiting for referrals, calling, waiting months to have an initial appointment. Waiting to hear what that says.
Neurodivergent Struggles
All the while my child is struggling. Struggling to adapt to this move across the country. Adapting to a new school, making new friends. This school is harder and way above the level that she was taught in a previous school. She is quickly falling behind and I can’t seem to get anyone to agree to help her catch up.
My child remains stuck in the “Yeah she’s not typical but she isn’t bad enough”. That doesn’t mean she deserves to be ignored. Especially not when she has a mother spending hours fighting for her every day.
This system is broken. The military side isn’t helping and I don’t have much time at work to keep pushing the issues. The civilian side isn’t helping. We are starting over. And meanwhile she continues to get worse instead of better. By the time we receive the care we need we will be digging out of a larger hole than we started in Arizona. It isn’t fair.
No parent wants to see their child suffer, and no parent wants to feel this helpless. Knowing you child needs something more than you, doing everything you can to find it and provide it and being denied it left and right. It isn’t fair. And it is probably one of the number one reasons my family is considering never leaving this area. By the time I establish everything she needs it will be time to go again and that just isn’t right.