Alone Again … at Lunch

Earlier this week at “Life on the Road Less Traveled,” I wrote about our recent drama concerning a child’s repeated requests to come home from school. Honestly, if I picked her up as often as she called home, she’d be out of school more than she was in.

Which would be just fine with her. For her teachers, and for us, not so much.

After some careful deduction, tracking the time of day these requests tend to arrive, it seems that lunchtime is particularly stressful for her. Like many schools in this area, Penn works on an alternate day schedule, and she has an extremely small circle of friends … so every other day she sits alone in the cafeteria. I can see why that would be upsetting. But I just don’t know what to do about it.

She won’t join a club, or choir. (Though she has a spectacular voice.) So it’s kind of tough to expand her social circle.

She refuses to go up and introduce herself to someone else sitting alone. (She thinks they will laugh at her. Which they might, but they might not.)

She doesn’t want to role play. “MOM! I’m not STUPID!” (Okay, then.)

She actually thinks she has a friend who has the same lunch, but the cafeteria is so big she is overwhelmed and can’t find her. (Penn has 2000 students, so it would be tough.)

Her teacher of record and I are trying to find a way to help her stay in school … yet I feel so bad for her, that this is such an anxiety producing situation that she feels physically sick at the prospect of eating lunch. When I was her age, I remember sitting by myself a lot … but I didn’t mind. I’d go to the library or some other favorite haunt with my book, and be happy. That’s not a solution for my daughter, though, who is “allergic” to books.

Social isolation can be one of the hardest parts of raising special needs kids, I think. We want them to feel happy, accepted, and safe … and yet so often the world feels like a big, scary place to them. We try to coach them from the sidelines … but ultimately what they need most is an understanding friend.

Lord, please send her an understanding friend. And have her stand behind Sarah in the lunch line, so she doesn’t have to go looking for her.

Amen? Amen.

Have you ever experienced this with your kids? What solutions have you found that worked for you?

 

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Small Victories are Sweetest

“It’s not where you stand, but what direction you are moving” was the apt backdrop of the 17th Annual Work Experience Banquet at Penn High School.

As I looked around the room, I saw my children’s  “village”: special needs teens who, just for tonight, were the achievers. Tomorrow they would go back to the struggle, just trying to eke by to get a high school diploma (if possible). But tonight, kids and parents faces were alight with pride.

Mr. Mott, who has been running the dessert “banquet” celebration for many years, did not sugar-coat his comments, but spoke from the heart for each student. “This one wasn’t sure he wanted to work here at first, but by the end of the year he was glad he tried it!” And “this student never gives up, always looks for something more to do.” Very specific and sincere. Sarah’s was, “When she shows up, she works hard and the cafeteria staff are always glad to see her!”

Sarah’s eyes grew as big as saucers. “Really? They LIKE having me there?” She trotted up to get her award, smiling shyly. Then, when the video featuring all the students began and she realized she was the first student featured, she covered her eyes and laughed. “They told me I was in this … Wow!”

When you are raising kids with “invisible” special needs, it can be rough going at times. You listen and try not to envy the moms whose kids score athletic and academic scholarships, who get into their first or even second choice of schools. You listen as they regale the group with stories of their kids going off to prom, or flash their senior pictures. And you wish with all your heart you had something to contribute to the conversation.

But tonight, just for a moment, we all stood tall and proud. And it was glorious.

Sincere thanks to Mr. John Mott, Mrs. Virginia Shafer, Mrs. Patti Walton, and to all the Penn High School staff

The Spanking

Yesterday over at Without a Crystal Ball, my guest post “You Might Be a Special Needs Parent If…” generated a surprising amount of traffic over here at EMN. My guess is that the ladies came over here, expecting to find more of the same … but the truth is, more often than not I forget to laugh at the ridiculousness that is my life sometimes.

Even though I live with Miss Funny Face, who lives to reinvent herself every day. Smokey eyes, copper eyes, nail polish in every color under the sun (and some she invents herself), hair pink one day and shaved the next. And an ability to change outfits at the speed of light … her definition of “outfit” varying wildly, so that I have to chase after her flapping coattails as she makes her morning break for the bus. Because I’m pretty sure if she’s got it covered on the way to school, it won’t be by the time she hits her first class.

Ah, Miss Funny Face. How I love you.

The teachers send notes home, of course. “Could you please have Sarah leave her jewelry at home? It’s a distraction in the classroom.” “Sarah keeps putting on makeup in class. She needs to focus.” “Sarah keeps using her Chromebook to watch makeup tutorials on YouTube. Please speak to her.”

Oh, reeeeeeeeeallly! And somehow you expect that I’ll have better luck managing your classroom from my home office than you do behind your teacher’s desk? Do tell.

Yes, I can (and do) inspect her backpack, confiscate contraband (to wails and gnashing of teeth over her foul luck in the Motherhood Lottery), and nag her constantly about her classroom deportment. On one memorable occasion, her incendiary response inspired me to resort to my mother’s solution: a couple of whacks with a wooden spoon on a fully padded, fully clothed derriere.  (While I’m not a huge proponent of spanking, I had had it with her. And at the time, it did stop the fireworks.)

Her final word on the subject came the next day: a CPS worker on our front doorstep, with a report of parental abuse and alcohol use (the glass of wine I’d had with dinner the night before), who quickly assessed the situation and informed my surprised daughter that getting her bottom swatted did not constitute child abuse in the state of Indiana.

After the social worker left, we talked with our daughter with as much patience and kindness as we could muster. We knew where the resistance was coming from (though we didn’t say this aloud): she had already lost one family, as an infant. She still had one brother, but they are at the stage that they can’t be in the same room without bloodshed. Even after more than a decade of family life, it was hard for her to believe she belonged.

What we did say was this: Didn’t she know that we love her, that she is the most important thing to us? I’ll never forget her response:

“Ninety percent of the time, I know you love me. The other ten, you abuse me.”

I don’t know what surprised me more: that, as a parent, she gave us an “A” in the most important parental indicator … or that this sense of security was so easily shaken that she still associates discipline with abuse.  (Asked to define “abuse,” she said it was yelling, making her feel bad, making her do so many chores, taking away internet, and making her write lines. Oh, and spanking. Definitely.)

One of the most challenging aspects of raising a child with developmental or neurological issues (whether FASD, PTSD, ODD, ADHD, attachment issues, or other kinds of mental or other developmental problems) is that it can be very difficult to come to a common understanding of reality. Attempting to reason with a child who is at war within herself is an exercise in frustration. You can argue, you can pray, you can encourage, you can reward (or punish, but reward is usually more effective with mine) … but you cannot erase that inner monologue that says the people who are caring for her don’t really love her (in adoption, that often translates to “they aren’t your REAL parents”), and that she is really unlovable, ugly, and powerless. Therapy can (and does) help. But it’s a long road, and there is no getting “around.” Only “through.”

All you can do is hold them until the storm passes … and then move on. Because love (like fear) takes many forms: it’s that midnight bowl of ice cream. It’s that family concert where you cheer her on for attempting to play the same three chords her guitar teacher has been teaching her for a month. It’s signing up to lead youth group, because making friends is scary, and at the end of the day you are her beacon of safety. It’s welcoming her into our bed at the crack of dawn for the bajillionth consecutive day, even when we all know there won’t be any more sleeping for any of us. And, the hardest love of all, it’s taking a deep breath and remembering how tenuous those ties can be, and willing yourself not to give in to the temptation to push her away, literally or emotionally.

It’s looking into those big, brown eyes and seeing … not the angry, snarly teenager who can’t WAIT until she turns eighteen and can leave this horrible place. But the sweet and silly funny face, that happy and cooperative young woman who graces our lives … at least ten percent of the time.

 

Special Needs Teens: Afraid to Dream?

As children grow, it’s only natural for parents to dream of the day they become full-fledged adults, capable of making their own decisions, paying their own bills, and deciding where to live and work.

When you’re raising special needs teens, however, that dream can take very different forms. For us, the dreams are less often about personal achievement than a quest for simple independence:

• If we invest in that private tutor, negotiate the right IEP, nag and push until we are blue … can he get him to squeak by enough of his classes to get a diploma?
• Can she really live with her friend in an apartment, or is she going to need a group home and a guardian?
• If he gets a certificate of completion, what jobs can he get after graduation?

Yesterday my friend Diane and I went to an event at Goshen College for parents of adult (and soon to be adult) children with developmental disabilities: Down syndrome, fetal alcohol syndrome, autism spectrum, and other life-long disabilities. As parents of disabled teenagers, we needed to make plans to help him transition to some kind of independence.

In addition to the keynote sessions on creating trusts, guardianship (and less drastic alternatives, and how to secure disability services (from the Bureau of Developmental Disabilities Services, or BBDS – pronounced “BEEDS”), there were a variety of organizations represented to help families make timely, informed choices. Here are some of the organizations that caught my attention:

• The Arc Indiana (Indianapolis, Indiana). Karly Sciortino-Poulter, their Outreach Grants Administrator, presented information on guardianships and guardianship alternatives (such as limited guardianships, powers of attorney, healthcare and/or educational representatives. She also urged families to make a “future plan” using the “Center for Future Planning” tool (https://futureplanning.thearc.org/) to guide conversations to protect and provide for the disabled adult while allowing him or her to participate as they are able in the decision making process. For more information, call 800-382-9100 and ask for Laura.
• Camp Mariposa (www.moyerfoundation.org; summer camp for students with disabilities, with other camps specifically for children who are living with a family member coping with addiction or bereavement). Founded by the Moyer Foundation, with branches in Seattle and Philadelphia.
• Erskine Green Training Institute (Muncie, Indiana: erskinegreeninstitute.org) This post-secondary school certificate program is for disabled adults who have obtained a diploma, GED, or certificate of completion. Each ten to thirteen week session prepares students for careers in hotel, medical, and food industry.
• Logan Institute/Community Resources (South Bend, Indiana, logancenter.org). Provides social, emotional, vocational, and other support to people with intellectual and developmental disabilities – including residential services and family supports.
• GateWay Services (Benton Harbor, Michigan gatewayvro.org). Provides transitional and independence services for disabled adults in Michigan.

If you have a teenager and need to make a transition plan, and are a resident of Indiana, I suggest you begin by reaching out to the Indiana Family & Social Services Administration (100 W South Street, Suite 100, South Bend, IN: 877-218-3059). Or contact the Arc to begin the process. The application for BDDS can take a year, so it’s best to begin the process well in advance of the child’s 18th birthday.