Last November my husband and I were called to an emergency meeting at the center where Lucky lived and we sat together, sided by side in the office, and listened, shedding buckets of sweat and a few tears as the staff openly admitted our autistic daughter may have to leave the facility because of her increasingly violent behavior and bullying. We talked about possible solutions and discussed what was next for her.  Needless to say, it was one of those times when we knew we were in way over our heads. What was next for her, and for us?

After the meeting I stopped at a grocery store to pick up a few things. Although I was making an attempt at normality, my head was still in the meeting and the cortisol surge released in my body from the panic I felt earlier was undoubtedly affecting my thought processes. I drove the cart around, trying to make sense of what it was I was doing there and remember what food we needed.  I looked at the shelf for clues. Bread. Okay. I placed my hand on a loaf and put it in the basket. There was an unfamiliar paper tag on the outside of the wrapper and as I examined it, I read the words, “You’re not Alone, You’re Loved.”  Where did that come from?? I felt a little surge of hope and wondered at the timing of the message. My head took over and pushed the thoughts of my heart aside. There was someone in the store putting notes on things, and I got one.

I tracked down a group of girls who were congregating in the produce section, and let them know what they were doing was nice, thank you, it was sweet, and so on, offering my gratitude in return. I smiled at myself and my ability to figure out what was happening, and for taking the chance to say thank you for a much needed gift of hope.

I turned away and continued pushing the cart, going over some of the words in my head that I had just shared with this group of young women. At that point I noticed something on the cart handle–it was another note! When did that get there? Those girls! They got me again when I wasn’t looking. The note said, “You totally got this.”  I stopped moving and let it sink in. The experience I was having in the store wasn’t provided for me so I could find out who did it and offer thanks.  

I had just come from a potentially life changing and devastating meeting and through tender mercies of the Lord, I was receiving encouragement and literal love notes from heaven, delivered by God’s angels. At the risk of again feeling the pain in there, it was okay to open up and let my heart feel the love offered to me, patching up some of the broken parts inside and slowly move forward again, with hope, knowing that I was “not alone” and with a lot of help and a little time, I would “get this.”

When Lucky and her younger sister Merida came to us at ages three and two, we knew they had faced some serious deprivations; one of them was food. At mealtime, we watched in wonder as the little couple ate everything placed in front of them, drinking every drop of juice, water, or milk, and then literally licking the empty plate or bowl that had held their treasure trove of food. It took a while for us and them to figure out the balance between what they really needed and what was a part of the intuitive storage plan their little brains had created in preparation for the lean days which surely must come again.

In Lucky’s case, she had an added challenge. Her executive functions failed her in this area of judgement and she didn’t know when to stop–pretty much anything. Pouring water into a cup. Unloading every item of clothing out of all her drawers while deciding what to wear. Coursing through the channels on the TV with a remote or listening to the hum of the car window repeatedly rising and falling. Exercising her little low-riding bike around the block so many times until whoever was following her was nearly too weary to spearhead the needed intervention to bring her in out of the cold.

She staked a claim to fame in our extended family at Thanksgiving dinner her first year with us. We were seated at the table, family-style, and as we began passing the food around, she carefully spooned the traditionally prepared green beans onto her plate, slowly and deliberately, eventually emptying the serving dish. I was directing the affairs of the dinner and failed to notice until it was pointed out to me what was happening, and we all chuckled and things were made right. The rest of the holiday, when we wanted to refer to a prime example of excess, we used the phrase, “You mean, like how many green beans Lucky dished up at Thanksgiving?”

Lucky is nearly 30 years old now, but she can still down a whole medium pizza in one sitting, or empty a package of duplex cookies from the dollar store in an afternoon. Well so can I, you may say, but she doesn’t eat mindlessly, out of depression or from food addiction, it’s methodical. Call it OCD or brain malfunction, it still happens. We still assist her in adding Ranch dressing or barbecue sauce on whatever she’s preparing to eat, or she goes too far, and sometimes makes it inedible, even for her, the lover of Ranch and barbecue.

This plays out in other areas of her life; probably the most disruptive to our family is her never-ending and unfair consumption of toilet paper. I’m here to tell you, it’s a war that will never end. We tried everything we could dream up. Our first tactic was to hand her pieces as needed, which meant being constantly on duty, 24-7, to someone who felt bladder pressure after taking one sip of water. We then assigned her her own exclusive roll which she used in record time, continually asking for more. When she was denied, she got creative, furtively removing all the paper from the other bathrooms in the house, and when that contraband ran out, she began using tissues, paper towels, etc. After many episodes of toilets clogged with strange cocktails, flooded bathrooms and the rest of us being left high and not dry, we finally went on the defensive and gave everyone in the house their own private roll, instructing them to hide it when they were not using it. We played a lot of cat and mouse with Lucky just keeping our own needs met. This went on for years–my husband was the untiring soldier who never surrendered. However, age has taken its toll, and within the last year, we called a truce and resorted to buying the $.79 four-pack house brand from Smith’s in bulk, and now we just hand it out to her as needed, roll by roll. We still offer our house guests their own private roll with instructions.

We chose a different battle with Lucky. which is proving to be much more epic: electronics and the internet. Pray for her. Pray for us.

Yesterday we moved our daughter Lucky from a 45-person care facility located 22 miles from our home to a three bedroom condo with two other roommates, just five minutes from where we live!

A few months ago near the end of December, I received a call from state family services to determine if we were still interested in placing Lucky in a “Transitional Program.” She’s been on this waiting list for services since high school (almost 15 years now) and of course, my answer was yes. When I asked, “Are you calling me because she’s been selected?” the voice on the other end was very non-committal and then our conversation was over. That was weird, I thought. About ten minutes later the phone rang again, and the same woman answered my question. “Yes, she’s been selected. You will receive a call sometime in the next few weeks from an intake specialist and the process of moving her will begin.” Well Merry Christmas!!  It was such potentially earthshaking news that I kept it close to my chest and only talked to my husband about it and a few select others.

We were full of anticipation yet doubt. Could this really be true? Could Lucky really make it in a program suited to assist individuals who were striving for independence, despite the huge obstacles they faced because of their “special needs”? In Lucky’s case, she had been diagnosed with autism, but it took a few years of school and a lot of doctor’s appointments to determine what was really the root of her developmental delays. Blood tests, brain scans, and all kinds of assessments for her cognitive and motor skills finally landed her on the spectrum, compounded by the discovery of a brain injury in the frontal lobe of her brain. This area is known the “traffic hub’ of the nervous system, where there is a dense set of connections to other parts of the brain, which sometimes makes it difficult to specifically pinpoint which neurological, psychiatric and developmental areas are affected by the injury.  For Lucky, it colors her decision-making skills, attention span, communication skills and her ability to understand numbers. Try sitting in the driver’s seat of the car, start it up and away you go, but sorry, no steering wheel. That’s what it’s like to be Lucky. Understandably this addition brain problem leads to areas of great frustration in her life, which, when coupled with autism, creates a whole new set of challenges and a long list of behavioral problems.

We don’t know when the brain injury occurred for her. Not a lot of information came with her when we claimed her (and her younger sister) as ours at age 3. But we know what it’s like to raise her. And it’s been a long, crazy, heartfelt, hilarious, intense, difficult, soul-searching, humiliating, fun, tender tutorial, learning and growing with her.

Skipping to three weeks ago: During all the intake phone calls and interviews, we told all, both good and bad, to the powers that be, leaving nothing out of her history. Our portion of her story was backed up by the current R.N. and behavior specialists who have watched over her for the past seven years where she was living. We waited, wondering. The person making the inquiry told us she would organize the information we gave her and would send it out to different places throughout the area to see if she would be a good fit for some of the homes available. We still felt like it probably wouldn’t happen, in fact, we didn’t even tell Lucky what was in the works, knowing it would be too huge of a disappointment if things didn’t pan out, for her and for us!

Two weeks ago: A phone call on Friday. We were invited to bring Lucky and tour a condo that was just a few minute drive from our house. We were kind of in shock but said yes, of course. It was time to tell her what was going on. We did it, and we were all overwhelmed with the potentially good fortune that had come her/our way. We still wondered if it was really true, but at this point everything shifted and our focus was on convincing Lucky it was true. Yes, there would be staff there, 24-7. Yes, a day program. Yes, someone to help her with her meds. Yes, a behavior specialist (whew!) Yes, your own room. Yes, you can move in next week.

And now, she’s there! Thank you, Lord.