How did I “do it” when I worked full-time after adopting LuLu, or even part-time? Looking back on the evolution of our family and my life that has made me a full-time stay-at-home mom to LuLu I wonder how I ever squeezed one more thing into my already jam-packed day. I think there were many things I just wasn’t doing -- many things that special needs children need.

The main thing I wasn't doing was being a full-time case manager. Children with as many disabilities as LuLu need a full-time case manager. I hear that some foster children actually have paid case managers (but I also hear those case managers are overloaded and often not available to do what needs to be done.) Anyway, how does any child or family survive without someone putting in the hours to arrange appointments, travel to appointments, follow up with all the administrative work and check out options?

For example, here’s my day today:

6 am – hopped out of bed early to get started on ATN conference materials. Was quickly derailed by an email from LuLu’s attorney, asking me to review a brief she needed to file by the end of the day in our federal appeal to the due process case.

7 am – showered after returning proofed copy of brief to attorney. Then returned to computer to answer emails and start on ATN conference materials.

7:45 am – took Kay to her driver’s ed class.

8:20 am – made breakfast for LuLu and ate breakfast myself.

8:45 am - delivery truck brought new mattress we’d ordered for Kay.

9:15 am – school called and was faxing information on next week’s IEP meeting. Needed to pass that information on to attorney.

10:15 am – sat down again to being work on ATN conference materials once again, but remembered that I need to fill LuLu’s med boxes for the week. Made list of meds and supplements that need to be ordered and began to order. LuLu needed my help on something, I looked up and it was time to pick up Kay.

11:15 am – picked up Kay and took both girls to early lunch.

12 pm- walked in door determined to place med order before the mail carrier showed up. Phone rang. LuLu’s therapist wanting to know if we can be there at 1:30 instead of 3 today. I missed the mail carrier with the med refill order!

12:20 pm – left a message for the psychiatrist about a med question.

1 pm – left for therapy.

2:45 pm – returned home from therapy and finally…for the first time today…I got to work on the ATN conference material. But not long after that, LuLu melted down and needed my focus for quite a while.

What didn’t get done today? I didn’t address that I have three outstanding insurance bills that have either been denied or are being ignored by the insurance company and I need to follow up. I also have two therapist/doctors bills to file with the insurance. And I needed to continue my research into private schools and their costs.

There are many days that I wonder where my day goes…how I can awake at 6 am and not find time to sit down until after 10 pm! But reflecting back on today, I can see where the time goes…in all the little administrative things that come with taking care of a special needs child. Notice that this day didn’t have much description of actually parenting LuLu – interacting with her, dealing with her frustrations or behaviors, helping her get her daily self-care and household things done. There was much of that – reminders to brush teeth, having her set the table for dinner, taking her swimming after supper. But the reality is that the management of LuLu is more time-consuming even than parenting her (and that’s no easy task).