This and That
I never knew challenging was going to describe much of my life that includes helping my special needs son. Life drastically changed when he got sick. Things aren’t always easy for him or me, so challenging is a good adjective to use. The changes I’ve had to make because of what happened to Ronan have turned a majority of my time into strategic planning and investigating sessions instead of typical doting and nurturing moments. I still do dote on and nurture Ronan, but it’s at a completely different level. My days include balancing motherly love while monitoring personal medical care. My own relaxation time is sometimes non-existent. Holidays away are usually too much work to manage, so they rarely get planned. Since Ronan’s worth every effort I can find and provide, I’ve learned to accept how challenging it is to be his Mom.
I’ve had to make some pretty big decisions for Ronan and his care. Those decisions have guided me to plan better medical attention, to find more appropriate educational support and to search for therapeutic intervention. Some decisions have been incredibly rewarding for Ronan while others have been an epic fail. Because these big decisions can affect my entire family, careful consideration and praying goes into the loads of researching, investigating and potential doing to coordinate the next steps in Ronan’s life. It’s a big challenge to pull off, and none of it is easy to do.
Every day I can’t help but wonder that if Ronan fell into this terrible dilemma maybe I can help him get out of it. If stuff went into his body that shouldn’t have, maybe I can figure out a way to remove them. If parts of his internal systems were affected by assaults to his body, I bet I can discover how each system is affected to learn how to support them to properly function again. It sounds so logical: if this, then that. If I can find the right help for Ronan, then together we can help turn some things around. As a hopelessly in hope sort of parent, this is how I think.
Take, for instance, what happens when I get a bee in my bonnet and want to try something new. This summer I had a strong urge to bring Ronan to a different provider. I’d said good-bye to some of Ronan’s mainstream medical team in the spring when his “within normal limits” test results continued to befuddle his medical doctors and me. Clearly the child’s issues are not normal! Before wasting more time with more tests with this particular medical department, it was agreed by Ronan’s doctors that nothing more could be done. I felt like we’d given testing to pursue new remedies enough of a try to be able to walk away without any remorse. I didn’t want to put Ronan through any more exams or lab tests with people who couldn’t, or wouldn’t, think beyond their medical textbooks. They knew “their” stuff very well but weren’t able to relate that to the other “stuff” Ronan was dealing with. That’s been a chronic problem for several of the providers we have seen, so I always keep in mind that someone else might come along to be able to help Ronan. It was time again for me to go down a different path for Ronan’s treatment. I didn’t mind though because seeing a new provider I had in mind meant we’d also be traveling.
Our summer included a very scaled back activity calendar—Ronan took a break from school and didn’t go through the summer months as he had in the past. That left more free time for other activities. We jumped in the pool to splash and have fun. We as a family enjoyed some community outings together. All seven of us. And, we survived! This was able to happen after many, many attempts of showing Ronan how to successfully go out in public. Weeks of practicing running errands in our neighborhood proved very helpful as Ronan gained a better understanding of how to behave in a store, the library, the movie theatre and shopping malls. His patience has increased, his ability to control his behavior has improved and his knowledge of what happens with other adults (store clerks, librarians, waitresses, cashiers) is better understood. I no longer have to pry a box of gluten-free cookies out of Ronan’s hands for the cashier to scan them so we can then open the box to eat the yummy cookies. More exposure in the community with positive reinforcement will hopefully lead Ronan toward a future of being a successful shopper out in town!
With Ronan showing improvement with these types of skills I decided that it would be the best time to take him several states away for an evaluation. I had thought about taking this trip before, but it never worked out. Already knowing how to be a better participant in parts of life beyond our own four walls, I made sure Ronan knew what kinds of situations we’d run into on a big trip like this. He’d have to get out of the car at a rest stop. He’d have to go into the bathroom stall with me and his siblings. He’d have to find and hold my hand in every new place we went. He’d have to remember that even though the strange looking grocery store isn’t the one we usually go to, he could still be a great shopping helper because the routine is the same. Ronan would have to follow precise directions to be safe and stay out of danger. A door leading to the outside world is still a door he doesn’t need to go out all by himself. I’d need Ronan to work with me outside of our element. I needed everything to run smoothly.
Once I was sure it was a good time for our trip, I realized how close we’d be to some very dear friends of mine as well as the beach. I thought it would be great to extend our travel days to some summer relaxing days. My strategic planning turned into extreme planning when I factored in those extra days after Ronan’s appointment. That planning helped me realize that our trip to a new provider was not just a medical necessity; it was going to be my summer vacation!
Bathing suit, pool floaties and flip flops were added to my list. The car was going to be completely full after I turned our 3-day-zip-up-the-highway-to-return-as-quickly-as-possible trip into a 7 days trip that included Ronan stuff plus fun stuff. I altered the plans, created a more detailed map of who to see, where to stop, how long for each visit and then got excited. Not only was Ronan going to see someone who might hold more answers for us, but I might just get some me time in, too.
This trip was going to be a challenge. Could Ronan handle it? I’m sure he could. He’s traveled farther, but it’s been awhile. Would my other kids understand and cooperate with the Amazonian effort it was going to take to pull this off? I kept my fingers crossed they could. We were going on an adventure that was 500+ miles away. I was counting on my typical children to pitch in and be great helpers. Finally, could I handle everything, everyone and myself as well? I had to! Oh, did I mention I was going to take this trip alone?
That strategic planning I usually do for Ronan’s everyday problems turned into extreme planning. My husband wasn’t going to be able to go with us. With his work schedule and with the window of opportunity I had to get Ronan there, I had to do this trip now. Factor in driving solo on major highways through the largest cities on the East coast while toting precious cargo in every seat of my car, and I had to be very thorough with every detail going into our journey. I thought of every possible moment Ronan and I would run into and wrote a list of what I needed to bring for him. I thought about how to balance Ronan’s appointment with 4 tag-a-longs who have been known to quickly lose patience in boring waiting rooms. I needed more support than I could fit in the car so it was off to do more planning. I called several friends I knew along the way and created a temporary support group at each locale on our route. Once I thought of every possible event or problem we might run into, I felt that yes, I was going to be able to handle a major road trip.
There and Back
The adventure to our final destination was truly an adventure. It included seeing new scenery and regions of America my children may not get to see for many years to come. It included breaking bread with friends who also walk this journey to future recovery. It included introducing Ronan to people who have only known his story through my writing. It also opened a doorway to Ronan’s health that I had always hoped it could.
I had many opportunities on our road trip for quiet thinking because of the long stretches of highway. Those moments helped open my eyes to see what I love about my typical children: their innocent hope for Ronan to one day be just like they are--typical. They have a strong desire to see their brother run as fast as they can, to play with them and not just next to them and to share their regular cookies with him so he doesn’t have to eat his gluten-free cookies alone. They crave the interactions of a brother who laughs at their jokes and not laugh in the middle of the night (and for hours on end). Fortunately, they understand and accept the challenge to get Ronan across these great distances to someone who is willing to help us. These kids have naturally developed an inner strength that took me years to develop. Their excitement to join Ronan on such an adventure was an added bonus to all the positive moments we had along the way.
Ronan gives our family many challenges that we didn’t expect. But, because of who he’s turned us into, these are challenges we just face head on. If we as a family have to plan another trip as big as the one we took on our summer vacation, I know that we would make it there and back. We’d squeeze all of us Jamesons in a regular bathroom stall along the turnpike rest stop because we stick together always. We’d encourage Ronan to continue to do everything he can despite the challenges his body forces upon him. We’d cheer Ronan and each other on while sitting in the car forever even when it flattens our boody bums. We’d try to stay as patient as we could during the long driving because at the end of that journey are friends who are like family. We’d help to make the positives come along because once the negatives have run their course, positives do exist. Sometimes they are right there in plain sight, but other times it’s just part of life to have to face a challenge to find them.
Cathy Jameson is a Contributing Editor for Age of Autism