I find it so frustrating when you take the time to build a team of doctors specialists etc and then you have to spend all of your time chasing them. I love the saying “it takes an army” but these days our army is exhausting me.

I have spent years researching things that are good/helpful for our children. Each of them have different needs and I find that over the years some work and some don’t. It really is a full time job keeping it all together.

Here are some things that seem to help me:

• Keep a very detailed calendar that you can share
  • I tried many shared calendars over the year – Cozi being a favorite but recently I went back to Google. It just works. My kids now have phones, I can put text reminders on there, and more importantly I can share it with part of my child’s team without having to do anything that special. Today their sitter and even their therapist has access to their calendar.
• Share the role
  • I am very control oriented and it has been very hard for me to let others help but I have learned to let my husband get involved and assign things to him. Giving away control is hard but necessary. I have also given more responsibility to our sitter. She can take on some of the tasks like checking their grades each day, writing emails to teachers and doctors
  • Make the doctors office share visit notes. Lord, I used to do this myself and it was so crazy. I would get notes after each appointment and then fax it to the rest of the team. I now make the offices do it. I sign off that it is ok to share and ask them to please do it. Yes, I need to stay on top of them but it is better than doing it myself. When they are not doing it, I address it immediately – more on that later
• Embrace Technology
  • Now I am technical enough to be dangerous but bottom line is there are things out there that help. They may not work for everyone but they work for me. Here are some examples:
    • I use the portals for my children’s doctors often. I write them letters so they can see how the child is doing and then scan it into each of their portals
    • I use online pharmacy at Walgreens so I get reminders when meds are due etc.
    • I scan EVERYTHING. Every IEP, every report everything I can. I save them on the computer under my child’s name and I save it with a date. It makes it so easy to find things when you need it.
    • I have also taken the time to write and now update my child’s story. It allows me to create a document that gives history so I do not have to recreate the wheel every time we change our team or they go to camp or someone new comes into their lives. Read this blog article to learn more.
    • Keep a spreadsheet of the team and contact information. More here on that one!
• Address things right away when they are not working
  • I have needed to have one on one meetings or group meetings when things are not working with my children’s team.
  • I often send emails out and information requesting change.
  • This is the hardest of all because again you are chasing others .
  • Sometimes you may have to break up with your child’s doctor.

These are some things that have worked for me. I would love to hear of anything that has worked for others. Please comment and share

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