What Day Is It?

Well, according to the 4000 (almost) posts I have seen on FB today, and in the newspaper and on Yahoo and the TV, I do believe it is National Autism Day and April is National Autism Month. If I sound a little peevish, I guess it is because I am.

Why? I should be overjoyed at the attention autism is getting, shouldn't I? Yes, I should.

Sometimes, as someone who says and writes and hears that word nearly every day for many years, I think I don't want to hear it anymore. I think it is sort of like the Breast Cancer Awareness themes; sometimes I believe we see and hear it so much that we become immune to it. It doesn't even enter our consciousness any longer. When all the NFL teams are wearing pink hats and cleats and gloves, I notice it one game and then I am only interested in the game, not what the pink symbolizes. (please don't send me nasty comments...I know too many people who have died of breast cancer, including 2 of my very best and longest friends).

The incidence of autism has risen dramatically, almost supernaturally. I was shocked when it became 1 in every 88 children was diagnosed with autism, and now it has risen to 1 in every 50 children. The word 'autism' covers an unbelievably huge spectrum of characteristics. It is the umbrella term for many conditions. While many are similar, there is no one set of behaviors or descriptions. No one-size-fits-all kind of diagnosis.

The fact that the children and adults are so diverse makes it difficult for someone not familiar with autism, to understand. When Kalisha was little, I knew it was autism, but I had difficulty getting a diagnosis. At that time, if you said autism, people pictured a child spinning in circles or banging their head on the floor. She was 9 years old before I finally had a diagnosis and it was only 2 years ago, when she was 27, that she was diagnosed with Asperger's. You never think of Asperger's and mental retardation being together, because they seem so opposite of each other.

You are probably asking why I write 2 blogs about Kalisha if I am tired of the word autism. That's a good question. I write because I know there a lot of Kalishas out there and a lot of parents who might benefit from my successes and my mistakes. I want them to be able to face the realities with faith and a sense of humor, when possible.

I get upset with people like Jenny McCarthy who wrote a book about curing her son's autism. Really? Really? Cured him, huh? Autism isn't a disease to be cured.

There are also MANY companies who are offering all kinds of false hope to parents. There are MANY that are legitimate, but the worms come out of the woodwork when they see desperate parents who will try anything to help their child. Just beware.

I am happy for the efforts of people who are trying to have legislation passed so insurance companies will be required to cover the costs of autism. We were fortunate to never have had a problem with insurance. Kalisha received therapies of all kinds: speech therapy, physical therapy, occupational therapy. But none of them were because she was autistic (because I couldn't get a diagnosis, remember?) they were because she was mildly mentally retarded and developmentally delayed. That was covered by her father's insurance. It took 8 years to get on a waiver and she is still waiting to be on an autism waiver.

I have thought about moving from Indiana, but unfortunately, she would lose all of her waiver benefits; they stay in the state. So-o-o you really want to be aware of a state's status in dealing with adult special needs before you pack up and move. I am not a politician and I certainly do not know how it would be accomplished, but it would be wonderful if the waiver rights were universal and transferred from state to state. Think of the problems for the families who must relocate for employment and then lose all of the benefits.

Okay, I will step down off my soapbox now. I really don't have any answers, I only know that sometimes I think if I hear the A word one more time in a day, I will scream. I did ask Kalisha if she would like to stand on our front lawn and hold a sign stating this was Autism Awareness Day. You can probably imagine how much fun she thought that would be..she declined the offer, but laughed and said it would be a good idea. (For someone else, I guess.LOL)

Consequences Are Such A Pain

Kalisha's iPhone

At the suggestion of Kalisha's Behavioral Consultant, she has a 'contract' for certain behaviors. If the terms aren't met, she loses all access to her phone for 24 hours. Kalisha loves her phone and has it with her at all times, so it is a little like cutting off her arm.

One of the things she must do is get up and be ready on her volunteer days; actually she has to do this for any 'commitment' she has made. She volunteers at the Share House on Tuesdays, the food bank on Wednesdays, and goes to a cooking class on Fridays.

She hates to get up in the morning. It has become more and more of a struggle with each passing week. She has every excuse under the sun....It's too cold, I don't want to learn how to cook, I already know how to buy groceries, I don't want to push grocery carts out, I'm s-o-o-o-o tired. I encourage her to go to sleep earlier at night. She needs some white noise when she sleeps. I understand that, so she is allowed to have a radio or CD playing, but she always has her TV on and then never falls asleep.

I, quite frankly, am getting pretty sick of the whole thing. I can't just let her sit at home 7 days a week and sleep most of the time; therefore, she needs to go to these volunteer jobs. Once she gets there, she enjoys her work and the people all like her. There are supports in place; people don't yell at her, she is accepted, she is given tasks she can handle, etc.

I think the time frame for losing the phone may have to be increased to 48 hours because she seems to have become immune to the loss for just a day. I will probably have to take the laptop out of her room too, so she can't get on FB from there either. What a pain it all is. Yes, I am being selfish. It is a pain because it is more work for me to take it all away. I just want to tell her, "Just get up and go. You can sleep later when you get home." Actually, I do tell her that, but when she is in Kalisha Mode, there is no reasoning with her.

Another reason she is so tired is because she never reaches a 'deep sleep' due to sleep apnea. If you want to read about our experience with the apnea testing, go back to a post from a year or so ago.

I think I need to take a nap, so I can stop thinking about this for a while.

On the good side of things, I have (accidentally, but by God's design) found someone who is very good at blog and web design. She has re-designed this entire blog site, but to get it all done, she needs to close the site down on Thursday for a few days. I am so excited!!

I Can't Want It More Than You Do

If you have been following this blog for any length of time, you know Kalisha is concerned about her weight. She talks about it often and expresses a desire to change her eating habits, get more exercise, etc. Quite normal thinking, right? Don't we all do that?

I do not press her on this or ever tell her she needs to lose it, unless we are having a discussion about health issues. These discussions are initiated by Kalisha, not by me. She can recite every reason she would be better off if she lost 50 pounds. We try to lose weight the right way....make small goals, celebrate little victories, don't go "cold turkey" with all fast food, sweets, etc. This past attempt we even took pictures of each other in the workout clothes (yes, I need to lose some pounds, also). Then we hid them in a folder where we can track our progress. Does anyone ever look decent in those photos?...Oh my goodness!

She also had an incentive in a hooded, fleece Colts sweatshirt she had ordered online, but when it arrived it was uncomfortably tight. That was her goal; to fit into that hoodie...comfortably.

Okay, so now she has the goals, the 'buddy' (me), the reward incentive, the health information AND she put all of this on Facebook, so she has a lot of friends cheering her on. She weighs religiously--twice a week-- and she has lost 3 pounds in a 2-week period. I keep encouraging her; it is better to lose weight very slowly, so you don't gain it back immediately. However, Kalisha is not good at long-range thinking. In fact, the day after she started, she asked me if she looked thinner!

She does really well with some things. She has a 12-pack of soda in the garage refrigerator but she hasn't even had one. It is the fast food and buying goodies at the grocery that 'get her.'

I want it so badly for her; I tend to get angry when she comes out to the car with her 'groceries' and they are 90% non-healthy things. Last evening, she wanted to grocery shop by herself. In the interest of her independence, I waited in the car. She came out with a container of strawberries and some orange juice; the rest was ice cream, Pringles, corn dogs, sugar cookies, Little Debbie cakes, etc.

A bit of humor...she said, "Well, I did have bananas and apples, too. But I thought it was too much money, so I put those back."

Of course, she put the fruit back, and she even likes fruit, but she likes the sweets more. I totally understand her struggle with food.

She needed a mask for sleep apnea, but I knew she was never going to wear it so I just turned the matter over to God and let it go. I am struggling with the letting go of this weight thing. My other daughter once told me, when we were discussing something entirely different, "Mom, you can't want it more than they do."

This has become my new mantra. I repeat it several times a day. I can't want it more for Kalisha than she does. I can't want it more for Kalisha than she does. I can't want it more for Kalisha than she does.
It's actually pretty freeing, if you accept that philosophy in your head. It can be used for hundreds of situations with children, spouses, friends, neighbors, etc. Although it's difficult to see them struggle with their unwise choices, we can't want it more than they do. We can't want them to quit smoking, see a doctor, lose weight, exercise, go to church, get good grades, ask for a raise, or whatever the case may be, more than they want it.

Have you ever tried to achieve a goal with a special-needs person? What was your own experience like?

Writing the Book

I have been saying for several years that I am going to write a book about Kalisha; all of the stages of her life and our experiences (hers and mine together). I am finally writing it and it is difficult. The mechanics aren't so hard, but some of the memories are emotionally draining to re-live. Some of the actions taken in her life, or lack thereof, are hard to admit.

When I attended a writer's conference in Illinois last June, an editor advised me to be personally transparent in my writing. I think I am already transparent on this blog, but there are some things I just can't say here, so you will have to wait for the book :)

I was also advised to get other parents' perspectives and experiences and add them into the book. I have contacted innumerable parents, special-ed teachers, and relatives of children and adults like Kalisha. I had ONE response; despite my assurance of anonymity and the chance to read and approve what I wrote before publication.

My conclusions about this lack of response--right or wrong--are that despite all of the media attention to Autism Disorders and Aspergers Syndrome, most parents are still reluctant to publicly disclose the things their children do, say, or how they act.

I am not breaking new ground with this book, but I can guarantee it will be as honest and truthful as I can make it; including, among other things, my swearing, yelling, and sometimes TOTAL mishandling of a situation. I have asked God to guide me so that the book will be helpful to other parents of children like Kalisha; whose child doesn't fall into any of the 'categories.' I want to title it "Not Different Enough".

This is the explanation for that title. First of all, I'm not asking or wishing that Kalisha any different than who she is, and I do realize that many parents deal with difficulties that are so much more severe than hers. However, there is difficulty in being somewhat different, but in a way that's not always evident to other people. Kalisha came home from school one day when she was in Junior High and told me, "Mom, kids don't know what's wrong with me. They just think I'm weird. I guess I'm not different enough."

That was a very deep and prophetic statement...

When she was raped and the man was questioned by the police, he said, "I didn't know there was a disability." Great defense, huh?

The other difficulty I'm having is the time lapse. When young parents read parts of the book concerning events from 1984 to 1990, they might wonder why I didn't use Google or the internet. It is beyond their comprehension that when Kalisha was born, we didn't even own a computer and neither did anyone I knew. I sort of just flew by the seat of my pants, and unfortunately in some cases, I believed what the 'professionals' told me. I was so unbelievably naive.

This book will not be a depressing read; I hope to balance the terrible with the hysterical and the preposterous.

I value the opinions of more experienced writers, and the thoughts of parents with special-needs children. Please comment and let me know what you think! You can comment on this page freely and anonymously if you like--it doesn't lock you into following for the rest of your life or anything like that.

One more thing. Anything I write is always pre-read by Kalisha. I will not post anything she does not want known, but she is as open as I am and always tells me, "Yeah, people should know that. I really want people to know what it's like to be me."

I Hate Halloween...Costumes

I can remember many Halloweens and the costumes that my kids either loved or hated. It always seemed like a lot of time and trouble for an hour of collecting candy! My suggestion has always been for each family to buy 5lbs. of candy they already know their kids like, throw it out in the middle of the living room floor, and say, "Go get it, Kids." That would also insure that it would all be eaten and there wouldn't be rock-hard 'not-liked' candy still hanging around at Christmas.

I never allowed the "gory, bloody, axe-in-head" kind of costumes and really didn't like the cheap-looking ones at the big stores either, so-o-o I usually made their costumes (hmm...perhaps that's why I don't like Halloween). I made some memorable ones: Miss Piggy w/ pearls, white gloves, golden curls, etc.; a full-body robot with 'bleep-bleep' sounds; a wrinkled old lady, complete with hat and cane; a witch with green oatmeal face make-up and a wart on her nose; a sailor; and probably my most memorable costume of all, was turning two of Kalisha's sisters into the California Raisins...they were young women going to a grown-up party.

I was always recruited to make my grandchildren's costumes too. Sometimes they were excited when they made their choice, but then turned into ungrateful gnomes when it was time to wear them. LOL

So, now comes Kalisha. She really was never comfortable in a costume of any kind. Too many sensory issues. She just wanted to go and collect candy. For the past couple of years, she could have gone to a party/dance at a local service provider. I could never talk her into going. This year however, since the girls in her Friday cooking group were all going, she wanted to go, also.



When I asked what she wanted to dress as, she said, "A Colts football player." I should have known; what else would she want to be? I'm thinking this is going to be a piece of cake. She owns everything COLTS already. A helmet, some shoulder pads, a football and we're good to go. The first problem was finding a helmet. She posted on FB that she needed one, she called every store possible for a realistic looking plastic one, she even got the phone number of a local high school football coach to ask if she could use a practice one. (Does she know this coach? No, she just wanted a helmet)



Her brother-in-law offered her a real helmet from his grade school days. A little small, but serviceable. I kept asking her to put her jersey on so I could make some shoulder pads. I painstakingly painted a blue horseshoe on each side and found 2 small removable Colts tattoos for her face.

She decided against carrying a football, didn't want to use the tattoos and didn't want the shoulder pads or to even wear the jersey. Okay......... at this point, I didn't care if she went in her pajamas; I just wanted her to go and enjoy herself.

She wore a Colts sweatshirt and jeans and carried her helmet. When I dropped her off, she put her helmet on the table and sat with a couple of girls she knew.


I came back a few hours later and found her in a group of people all dancing to, "We are family...."

She said she never did put the helmet on at the party, but she had a great time.

Mission accomplished.

Agreeing Has It's Downsides

You will probably need to read the last post to understand this one a little better. Kalisha has the bad habit of agreeing with anything that someone says. Because of her amazing BC (behavioral consultant) she is not as guilty of this as she once was. Many times she agrees with something without even knowing what she is agreeing to, and other times it's an unconscious thing that she does while she is thinking about something else.

There was a time, several years ago, when she would go along with anything that was proposed. At that time, she rode our public transportation system almost every day. She considered the people on the bus to be her best friends, and many times, it led to dire consequences. I used to tell her I hoped no one ever asked her to help when they robbed a bank, because she probably would. She would always laugh and say, "Oh Mom, I would never rob a bank."

In retrospect, I should have been more specific.

She came home from the bus one afternoon with a beautiful pink cat carrier, WITH 2 KITTENS IN IT. We already had a 12-year-old cat and neither he nor I wanted any more cats. Here is our conversation as well as I can remember it.

Me: "Kalisha, who do these kittens belong to?"
Her: "Oh, they are Celeste's but she is moving and asked me to keep them for her until she gets to her new apartment."
Me: "No, no and no. We are not keeping them. How do you know they don't have fleas or some kind of disease?"
Her: "She said they didn't have fleas."
Me: "We don't have an extra litter box or anything."
Her: "Well, they can live on the front porch for a while, can't they?" (It is an enclosed porch)
Me: "Honey, fleas can get on our other animals, even from the front porch." (Yes I know, I am a little flea paranoid, but I once spent a lot of money eradicating the little ______ at a different house.)
Her: "I'll take care of them 'til she gets them."
Me: "Do you know her last name and a phone number?"
Her: "No, she wouldn't tell me her phone number and she doesn't have a last name."
Me: "Great! If she wants you to take care of them, did she send any food with them?"
Her: "No. She doesn't have any money."
Me: "Well, if she doesn't have any money, where did she get that new cat carrier? It still has the tags on it."
Her: "She stole it from Wal-Mart."

...stunned silence here...

Me: "SHE STOLE IT? WERE YOU WITH HER?"
Her: "Yes, but I didn't really steal it because I didn't walk out with it. But she had to have something to put them in when she got on the bus."

After I picked my chin up off the floor and was coherent again, we talked about what God has to say about stealing and how wrong it is. The people who steal from stores make the rest of the things more expensive because the store has to make up the money from somewhere.

Kalisha: "Okay. I'll just take it back to customer service and tell them my friend stole this and I'm returning it."
Me: "Somehow, I don't think they are going to believe you."

I was absolutely certain Kalisha was never going to see Celeste again. We found homes for the kittens and even though I know you are going to tell me I should have either, 1. Made Kalisha take it back and face the consequences, or 2. I should have taken it back and offered to pay for it. I did neither.

I made certain it was clean and then I put it in a Goodwill box. So if any of you purchased a bright pink cat carrier from Goodwill a couple of years ago with the tags still on it, you now know you are the proud owner of stolen property.

What can I say? Sometimes you just 'gotta do what you gotta do' and ask forgiveness for it and I AM really glad no one ever asked her to help rob a bank!

*We also discussed the meaning of the word 'accessory'...as in accessory to a crime.

How do you explain the concept of 'right and wrong' to your older special-needs child? I would love to hear your stories!

Who Is She?

Kalisha Watching A Colts Game

My daughter, Kalisha, is a lot of different people rolled into one. Not in a 'split personality' kind of way, but in an age kind of way. I never know exactly what age she is from day to day. She can be a little girl that needs comforting, an adolescent that refuses to see things from another point of view, an obstinate teenager, a concerned and caring adult, or all of these depending on the situation.

She will agree with anything I ask her to do. "Kalisha, take that laundry basket to your room when you go upstairs."

"Okay, I will."

Then she doesn't do it. I have 4 other children, so it's not like this is something new, but her not doing it is different. She isn't defiant, she just doesn't think about the request, if that makes any sense. She agrees because she doesn't want to upset me, I guess (believe me when I say it takes more than a laundry basket to upset me). The problem is that she will agree with just about anything I say or suggest. Here is an absurd example:

"Kalisha, I really don't like the colors of the leaves in the fall. I like it better when they are green."
"Yeah, me too."
"But, the reds and oranges and yellows really are pretty, I guess."
"Yes, they are."
I tell her I don't want her to agree with everything I say. "You have a right to your own opinions; you don't have to think exactly like I do."
"No, I don't."
Then she smiles at that answer, because she knows she just did it again.

Sometimes we practice. I will make a statement and ask her to think about how she really feels before she answers. If she really does agree, it is okay to say so, but if she doesn't agree, that is okay, too. This is a hard lesson for her to grasp for several reasons. She wants to please me and others; she is a very concrete thinker, and many times she doesn't know how she feels about something, so agreeing is the easiest route.

This can and has gotten her into many unhealthy situations....so we continue to practice. I will post the story of her being with someone while they were stealing something from a store.....next time!