Archive for March, 2019

All By Myself

Yesterday evening felt like Hubs’ and my last night – not so much alone, but without having a care in the world about what is going on in our house. C will be home a week from today, and to say I am not feeling ready is an understatement.

Out to dinner we went. Apparently, it’s prom somewhere, and there was a huge table of dressed up kids having a great time. I watched them giggle and smile and talk and I was hit with a pang of sadness that brought tears to my eyes. C is nearly 18 years old, yet these moments still take me by surprise when they happen. You would think I’d be used to them by now, as the window of typical closed long before it could open.

I’m not sure what that sadness is about, exactly. I don’t picture C ever sitting in a restaurant with a group of kids before going to prom, but that is hardly a barometer of a life well lived. I think it is more about C having people. No siblings, no cousins, and I can remember every kid that has been his friend. They have been few and far between. He goes to school, goes to work, and comes home. He spends entire weekends seeing no one but us.

For me, isolation has been a sign of depression. For C, isolation probably causes his depression, perhaps without him even realizing it. He simply doesn’t know anything but isolation, really.

Still, I sometimes don’t think C knows who he is unless he has someone to bounce off of. He is so intensely social and desirous of contact, and most of the time, that contact is us. It’s no wonder this past seven months has been such a respite for Hubs and me, and I probably shouldn’t be surprised that my androverted self is anxious at the thought of C’s return. Because really, that’s the core of it: C needs more than we can give him. He needs a life outside of home, and we need a life separated from being his entire circle.

C has been around kids 24/7 for the last seven months. While they all have autism and I can’t expect he’s necessarily picked up any great social skills, I hope that he has experienced the joy of interacting with one’s peers. I hope that he will somehow have recognized the power of companionship and will do whatever it takes to get out there and make some friends, whatever that looks like for him.

 

March 17, 2019 at 11:51 pm 3 comments

If You’re Happy and You Know It

I love to write. I have often thought if I could somehow make a living writing, I would. Teaching linguistics deepened that interest as I found new ways to rejoice in the language humans use. I had an entire lecture centered around the “F” word. I took my classes to cemeteries to study the use of language on gravestones (thanks, Dr. B., for sparking that interest). We debated whether behavior follows language or language follows behavior. All of this brought me great satisfaction.

Words are my happy place.

When I came back to “What We Need” several months ago at the urging of Therapist NC, it was pretty easy to write. Even though at some point in the past I felt as though I’d said everything here I needed to say, NC reminded me that this blog could now be about me more than about C. The words flowed. Then things slowed down a bit and I found myself struggling somewhat. The words did not come as easily as they used to.

Writing is my way of working through things. As my happy returned, I had less of a need to process, I suppose. I find it hard to write when I’m happy. When I’m happy, I’m out living my life, not processing it. Still, it’s practice, like everything else I’m doing to help stay on this road when C comes home. To remain calm amidst any chaos that may occur. To keep peace in my heart and head no matter what is happening in my home. To somehow walk that fine tightrope line of balance between what I need and what C needs.

It does seem like a tug of war to some extent. I’m reminded of that poem about special needs mothers by Erma Bombeck (excerpt below). It always resonated with me because I’ve never thought of myself as particularly patient and I have equally thought myself selfish. Somehow reading it justified those qualities or lack thereof, and I felt less guilty about not being the perfect mother.

Words have power. So I will continue to write, happy or sad, as I make my way through what is to come.

The Special Mother, by Erma Bombeck

“Give her a disabled child”. The angel is curious. “Why this one God? She’s so happy.”

“Exactly,” smiles God. “Could I give a disabled child to a mother who does not know laughter? That would be cruel!”

“But has she patience?” asks the angel.

“I don’t want her to have too much patience or she will drown in a sea of sorrow and despair. Once the shock and resentment wears off, she’ll handle it. I watched her today, she has that feeling of self and independence that is so necessary in a mother. You see, the child I’m going to give her has her own world. She has to make her live in her world and that’s not going to be easy.”

“But Lord, I don’t think she even believes in you.”

God smiles, “No matter, I can fix that. This one is perfect – she has just enough selfishness.”

The angel gasps – “Selfishness? is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally she won’t survive. Yes here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider any step ordinary. When her child says “Momma” for the first time she will be present at a miracle and will know it. I will permit her to see clearly the things I see… ignorance, cruelty and prejudice…and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side.”

“And what about her Patron saint?” asks the angel, his pen poised in midair.

God smiles… “A mirror will suffice.”

 

March 10, 2019 at 11:01 pm Leave a comment

Backseat Driver

C gets released in just two short weeks. It’s hard to believe seven months have gone by – on one hand it seems like the blink of an eye, but when I look at everything that we have accomplished in that time it seems to spread out a bit more.

I seem to have attained a more Zen-like level of calm, but as tasks related to C’s return pile up, I see chinks in that armor. I quickly remembered how much work just goes into managing all things C. Today I spent a couple of hours finding an attorney for our application of guardianship, making an appointment with his psychiatrist, setting up an appointment for his evaluation for para-transit, signing up for city bus training, researching how to switch him from Institutional to regular Medicaid, and communicating with his school about re-enrollment.

I’m left wondering how people with less skills and pushiness navigate the system while simultaneously being frustrated at the challenges of navigating said system. It all adds up to one thing: stress. C has been someone else’s responsibility for seven months, during which time I have enjoyed the fact that no one needs me for their survival in this world.

Then I wonder if I’m over-estimating my own importance in C’s life. The fact is, this kiddo has done something I can scarcely imagine; he has navigated residential treatment with nothing short of great success. He has gone from being an only child to having three roommates. He has joined the basketball team. He has gotten straight As in school. He has been selected as Resident Adviser for his wing. He has survived and thrived in an environment that causes most people to shudder when thinking about it.

Perhaps when C comes home he will be more grown up, more responsible, and more ready to take control of his own life. Perhaps that will enable me to step back and watch a bit more, allowing me to continue to cultivate the joy I have found in my freedom to live my own life. Somehow we’ll have to reintegrate into each other’s lives, but I hope that we can do that while maintaining the boundaries I need in order to survive in his world.

Maybe, just maybe, we are both ready to take more of a backseat in each other’s lives.

March 7, 2019 at 12:04 am Leave a comment


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