Closing my eyes in church

“May I bring the Eucharist back here to your seat?”

Church Lady was crisp and tan, summery and sweet, in her black and white gingham dress and full skirt.  She had a perfect, tasteful pedicure and low-heeled sandals.  Perfectly appropriate and approachable in every way. She was pretty like those self-deprecating moms in the viral videos who make fun of their “real mom bodies” and talk about their parenting failures but in reality are gorgeous and perfect and fashionable by any standard.  She was a walking Talbots commercial.  I was a sweaty mess from pushing that wheelchair in the scorching heat, disheveled and exhausted from Charlie’s 3 AM wake up call, jolted awake wondering if he was having a seizure or just had his days and nights mixed up again.

She caught me in such an emotional moment.  I burst out crying right in her face.

“It’s really no bother.”

I could sense her getting emotional for me, when she realized I was crying.

I politely sent her away.

“Are your allergies bothering you again, Mom?” said my eight-year-old daughter, who, thankfully, did not make the transition between me patiently telling her to sit up straight and not say, “Yo!” as her greeting during the sign of peace to my overwhelming grief in that hot chapel in late July.

“Yes, sweetie.  You know I have bad allergies.”

I have taken Ryan and Charlie to church twice now since moving to our new town.  Both times, the people in my life wonder aloud, “Why would you do that to yourself and everyone at church?  Why don’t you just leave him at home?”

I go to church to seek support and find a sense of community.  There is no way that the community can support me without meeting Charlie and seeing my daily life.  There is just no way.  Saying, “my son at home had two brain surgeries, has profound cognitive impairment, and autism” doesn’t do justice to the constant care he requires during all of his waking moments.  It simply needs to be experienced.

He is my child, and he has every right to be there, just like the “neurotypical” babies who squawk in the pews but, eventually, grow out of it.  Charlie is my big boy, sitting in the aisle in his wheelchair, sometimes half-singing the Wonder Pets song at the top of his lungs, sometimes dumping the contents of my purse all over the aisle, laughing as my makeup, coins, credit cards, and keys  scatter everywhere.  Sometimes he claps and cheers for no apparent reason.  He is no different from any toddler, only my stories of how he misbehaved at church will never be past tense.

The first day, I was so self-conscious.  Charlie was making a lot of nonsensical noise, singing and screeching, taking his shoes and socks off and throwing them.  Of course people are going to turn around.  I would, too, because that’s what you do when you hear a strange noise.  You turn around.

I wanted to crawl under a rock and die.

I was so self-conscious by all the people turning around, but I was determined to stay.  So I closed my eyes and tried to find peace, listening to the priest and finding comfort in the prayers I have been saying since I was old enough to speak.  I smiled gracefully and, sometimes, winced, when he was particularly disruptive.  I could feel their eyes burning a hole in me.

That first time, we chickened out and left about ten minutes early after Charlie urinated all over himself and the aisle.

There is something that happens when hundreds of people experience your suffering all at the same time.  You see your life through their eyes.  All the little things you have gotten “used to” suddenly brought to the surface.  It is sad and painful and overwhelming and devastating but also beautiful and liberating and cathartic.

I want to be a part of life.  I want to take my kids places like everyone else.  I want to live my life without thinking about who is going to be capable of watching him, if his noises are going to upset everyone.  I just want to be a regular mom and take my kids to church.  I want my daughter to have these ordinary experiences.  And I want others to bear witness not just to my suffering, but to my joys.

In those 60 minutes of Mass, I see through their eyes the horror of the level of Charlie’s impairment, how much work his care requires, how exhausting it is to be his caregiver.  But I see something else through their eyes:  a devoted mother of both children who is determined to listen to the homily, teach her daughter morals and discipline, and not let Charlie’s condition make her compromise the type of upbringing that she wants her daughter to have and that her daughter deserves.  My kids are far too important to slip through the cracks because I am not brave enough to meet their gaze.

I am starting to feel their respect as much as their pity.

I will keep bringing him, and each week I will greet my fellow parishioners, who so far have all been so compassionate with their words, deeds, and kind glances. When I become overwhelmed by the energy coming my way, yes, I will simply close my eyes.

 

 

Growing up is hard to do: transitioning your child with special needs

I am the first to admit that the idea of transitioning Charlie to adulthood absolutely freaks me out.  I am FINALLY all settled with the doctors, therapists, schools, systems, insurance, and programs and I will have to do it all over again in what seems like a few short years?

I find that a lot of the resources out there for transitioning kids with chronic illnesses are aimed at kids who are capable of  becoming independent advocates for themselves.  My Charlie has a profound intellectual disability and will probably never be able to fully communicate his medical history, wants, and needs to a health care provider or live independently.  It is very possible that I will always have to be his voice and make decisions for him.  This adds a really challenging layer to my transition planning, so I need to start early.

Here are some of my questions/worries about transition:

  • Will he live with me or in a group home?
  • Where are the group homes?
  • What if the group homes are horrible like the institutions I saw on 60 Minutes? How can I find a nice one?
  • What happens at these places?  What will his life be like?
  • How will I pay for the group home?
  • If he stays with me, how will I take care of him alone?  He’s only six and it’s already difficult to bathe him alone. Can I get an aide to help me?
  • What are some things I will need to look out for at his IEP meetings as he gets older?
  • If Charlie is eventually able to work, are there rules about how much money is he allowed to make?
  • How will his Medical Assistance and other benefits change?
  • How do Social Security benefits fit in with all of this?
  • What forms will I need to fill out?  What are the associated timelines and deadlines?
  • Will I need to make myself his legal guardian?  How does that work?
  • Will his sister have to play a role in any of this?
  • Are my assets protected if Charlie needs expensive care?
  • Are my parents allowed to leave money to Charlie in their will?  If so, how much, and under what circumstances?
  • What is our children’s hospital’s policy on transition?
  • What doctor will Charlie see when he is transitioned to adulthood?
  • How will all of his medical records get transferred?

What will happen to Charlie if anything happens to me?

I am currently in the early stages of this process and will update these links and this narrative as time goes on.  However, although incomplete, I hope this helps you in your exploration of transition resources for your child.

The first thing I recommend is that you create a personalized advocacy toolkit so that you have your information totally organized and an entourage of helpers when this transition starts to happen.  Send to your team your own list of transition questions and you will get a wealth of information in return!

Don’t forget to e-mail your social workers and case managers at the hospital and school system and ask them to explain what to expect in the transition process.  If it happened today, to which medical center would they refer you? (you probably have some idea, but ask anyway).  Is there a program in place at the hospital to assist with transition?  Can they put you in touch with a family with similar circumstances to yours who has successfully transitioned?

Go to your local social media group (the one you identified or created as part of your personalized advocacy toolkit) and ask if anyone has gone through this transition process.  When you find someone, ask if they can post about their experiences and recommend helpers like social workers, financial planners, and lawyers who were particularly useful in this process.  Just asking the question is guaranteed to launch a lively discussion, and it will be great to hear the experiences of families who live in your area.

Next, go to the Child Neurology Foundation (CNF) page on transition.  Every time I go to their site I say, “WHOAH!  Where has this been all my life?”  I am so thankful that they put together this page. It’s really, really good, and not only for people with neurological conditions.

I want to highlight some of the other links that will be particularly useful to my readers:

Disability.gov has a page on transition that has some great resources.

Foster care:  For people with disabilities who went through the foster care system, this guide from the Florida Division of Vocational Rehabilitation is absolutely wonderful.

State resources:  Got Transition has a list of links to your State’s transition resources.  The American Bar Association’s Adult Guardianship Handbook by State is also terrific.

Financial planning:  this Special Needs Financial Planning blog post breaks it all down nicely.

Education and Employment:  The Center for Parent Information and Resources has a great overview on transition in the school setting that is helping me to get oriented to all that is involved.  You should already know about this group from when you created your personalized advocacy toolkit.

Social Security Compassionate Allowances List: In response to complaints about long waits for the Social Security Administration (SSA) to make determinations for Social Security disability benefits (SSDI) or Supplemental Security Income (SSI), SSA now offers a Compassionate Allowances program that expedites the application process for people who have certain conditions.  Find out if your child’s condition is on the list.

As you can see, I have a lot more questions than answers about Charlie’s transition to adulthood, but at least I am armed with all of the information that I need to make his transition go as smoothly as possible.

What are your experiences with transition?  Do you have any great advice or resources to share?  I would love to hear from you in the comments below!