Sunday, July 14, 2013

What I'm Doing on My Summer Vacation

Yesterday I went for my annual mammogram. As any woman knows who has been through this ritual, this test involves the emotional aspect of putting aside modesty to allow our breasts to be x-rayed along with the physical aspect of having them and our collarbones smashed in machinery to get the best image. Nonetheless, we go through this test to make certain we are healthy or, God forbid, to catch cancer in early stages. As an autism mom, I have to be healthy because my child, probably even more than others, needs me to be healthy to take care of him, even at age 21. I had to remember this yesterday as I endured rather insulting comments regarding my profession as an English teacher from the technician who was doing my mammogram, essentially telling me that teachers are bossy, kids don’t like English, and grammar is boring. Wisely, I knew not to waste time trying to convince her otherwise; raising a child with autism has made me less sensitive to criticism and smart enough not to waste time on those who do not understand. The comment that hit me hardest, however, was when she remarked how nice it must be to have my summer off. She went on to say that when children are smaller, the teacher mom can spend the summer having fun with them, and when the children are older, the teacher mom can relax and do projects around the house. I didn’t bother to mention that my son has autism, nor did I try to explain life with autism to her; she wouldn’t have understood anyway.

This week, like many weeks, found me making an assortment of phone calls for Alex, trying to get appointments arranged and checking on various things he needs. For example, on Monday I had to call the pharmacist about one of his medications that seems to be on a different refill schedule than his other medications. Thankfully, she is very helpful and pleasant, and she went back through the records to find the original prescription, confirming that I would need to call his psychiatric nurse practitioner’s office to have her authorize a refill. When I called her office, I also set up an appointment for next month for his six-months check-up. After doing that, I remembered that we already had an appointment scheduled that afternoon with the case manager who oversees his state disability funding and his behavior therapist to work on his annual report for the state to continue services. I called the office again, rescheduled his appointment for the morning instead of the afternoon, thinking that would create a busy, yet workable day.

On Tuesday, his behavioral therapist came for her weekly session, and as usual, I flew around the house making sure it looked presentable for her visit. In addition, I wrote his weekly report for her, updating her on behavioral issues to keep her apprised of his progress and any issues she needs to address with him.  On Wednesday, we took him to the dentist, which is something Alex actually enjoys “one hundred percent,” largely because his dental hygienist is wonderfully sweet and patient with him. Also, we have been blessed that Alex has never had any cavities or any other dental issues, so his visits to the dentist have just involved having his teeth cleaned and checked. Because of his anxiety issues, we hadn’t taken him to the dentist for over a year. Unfortunately, they discovered that he has some cavities in his back teeth that will need to be fixed, and the dentist wants to do this under general anesthesia in the hospital because of Alex’s anxiety and sensory issues. Although we would rather Alex didn’t need to have any work done, we agree with the dentist that this is the best way to handle the situation to avoid upsetting him.

On Wednesday, I received an e-mail from the intake coordinator from the agency where we are on a waiting list trying to get Alex into a day program. She was notifying us that she would be taking a different position within the agency and would be turning over Alex’s file to another intake coordinator. Later that day, she called me to discuss respite care services the agency could provide for us. After not having heard from her in months, I was surprised that she contacted us to offer assistance. Nonetheless, I appreciated that she explained the various services we are eligible to receive, and I was able to remind her that we were most interested in getting Alex involved in the day program, which apparently is still on hold at the moment. Fortunately, we’ve become good about waiting for this after over a year of being on the waiting list.

On Thursday, Alex’s dentist’s office called me to let me know they had set a date for his dental appointment at the hospital next month. In addition, he must see a doctor affiliated with the hospital where the dental work will occur the week prior to that appointment to make sure he is healthy enough for the anesthesia. I appreciated that she had scheduled this for us, as well, but it was the same time as the appointment I had rescheduled with his psychiatric nurse practitioner, which meant calling her office to change his appointment again to the following week. Fortunately, we are able to take care of all these various appointments before Ed and I have to go back to our teaching jobs.

On Friday, Alex decided that he needed to go to the eye doctor, probably because Ed and I have both been to the eye doctor for our annual appointments this month. Even though all evidence shows that Alex has perfect eyesight, he insists that he should have his eyes checked. After he pestered me repeatedly about making an appointment, I called the optometrist, and Alex is delighted that he will see him tomorrow morning. Ed and I are praying that Alex will be cooperative for the eye tests and that his eyes are as healthy as we think they are.

Yesterday, after my mammogram, I spent time researching a new antifungal drug Alex’s doctor has prescribed in yet another attempt to get rid of the thrush infection of his mouth that we have been dealing with for over a year. With all the medications Alex takes to keep him calm, adding anything new to the mix makes me a little nervous and sends me to websites checking for possible drug interactions. Convinced that the new antifungal should be safe, we will start that medication today and pray this will be the magic bullet that finally eradicates the stubborn candida fungus in his mouth.

Aside from my role as Alex’s personal assistant in setting up and coordinating appointments with various professionals who help him, I’m also his social director who comes up with daily outings to keep him entertained and makes sure he has a fun summer. This week, we went to two outdoor band concerts in the park, visited Bass Pro Shop for the first time, had dinner at Taco Bell twice so he could enjoy his favorite Cantina Bowl with rice and beans, took him to an arcade to play video games of Wheel of Fortune and Deal or No Deal, walked with him on the trails of a nearby nature preserve, got him apple chips and a soft drink at the Target CafĂ©, and took him to the Indiana Dunes State Park beach where he waded in Lake Michigan. Certainly, we had a busy week, but an enjoyable one, too, even thought it was not the relaxing/home project one suggested by the x-ray technician who did my mammogram. However, this week reminded me that I must be at my best so that I can take care of Alex’s needs, and I’m thankful for my health, even if that means enduring those annoying mammograms.  While I wish my house were more organized and that I had more time to read for enjoyment instead of research, I am grateful to have my summer “off” so that I can devote more time to Alex, making sure that he, too, is healthy and can enjoy life to the fullest.

“Work willingly at whatever you do, as though you were working for the Lord rather than for people. Remember that the Lord will give you an inheritance as your reward, and that the Master you are serving is Christ.” Colossians 3:23-24


phyllisbizeemom said...

Wow! You are an inspiration to me, Pam! I thoroughly enjoy your blog and I admire your tenacity!

Keeping up with all the paperwork and re-checking that people are doing what they promised has got to be a lesson in patience every day!

My son, Trevor, is 9 & he perseverates a lot! He was just diagnosed PDD-NOS. (He also has 5 medical issues, including being extremely low vision/legally blind.)

I must admit, I was surprised (& relieved) to learn that you & your husband have lost your patience with Alex; I feel SO bad when I lose my patience! (It really is very difficult to think while the questions keep coming!) Thank you for sharing your human-ness. :-)

Well, thank you again, Pam. I look forward to every Sunday night, when everyone else is to bed; I can sit and gain some wisdom from you.

Prayers for Alex, you and Ed.
Sincerely, Phyllis

Bright Side of Life said...

Hi Pam

I so want to respond to your whole post, however I am afraid that I would have to write my own blog post for you!! :-)

It is fascinating to read what you all get up to and I thank you for sharing your *summer*.

When I read about the mouth thrush infection I thought... aha, us too. Let me know how you get on with the new meds. I am thinking of swapping Nick's mouth daily with a cotton ball soaked in warm salty water.... grasping at anything at the moment.

Lovely to connect up with you.

Pam Byrne said...

Hi Nick's Mom,
Thanks so much for your nice comment. I hope that the thrush is clearing up for Nick because we are still fighting it mightily here. I ran across some new research yesterday that recommends higher dose and broader spectrum probiotics, so I bought some of those yesterday and am hoping for the best. The research also recommended eating sauerkraut because it's a fermented food that is good for the gut. Fortunately Alex loves sauerkraut. :)

Thanks again for your note--I'm always pleased to meet other autism moms.

Take care,