Please Tell Me You Didn't....

The events I am going to write about happened a week ago, but it has taken me that long to acclimate myself to what I already know --- the words, "What the hell...?" are going to be a part of my vocabulary until I die. (Insert a sigh of resignation here)

Last Saturday, I had the opportunity to attend a ACFW luncheon in Indianapolis. My friend, Lynne, invited me and it was a great day. The speaker was informative and enjoyable, the food was good.
Kalisha was busy at home and my grandson was at a friend's house. All was well.
We were about halfway home when I received a text from Kalisha. 'Can we have Little Ceasar's pizza for supper? Text me back.'

My text to her was: 'Probably. We'll talk about it when I get there.'

Thirty minutes later, she calls me and before I can even say anything, I hear this: "I wanted Jacob's pizza but he wouldn't give me any. I begged and wouldn't leave him alone so he took my phone. I got mad and called Dad. He said that was stealing and told me to call 911. So I did and the police came."

 

Now is when you hear me say, "WHAT THE HELL?"

 

Those words applied to several things: The fact she called the police, the fact that her father told her to, and the fact that I am in no position to do anything about it at this point. I am in a car on I-69.

 

 

Deep breath...I knew exactly what happened and could visualize the entire scenario which didn't make the picture any prettier.

 

Kalsha gets hung up on food, especially if someone else has some that she loves; like pizza. Jacob had come home and was eating some of HIS leftover pizza from the night before and that was more than she could stand. I should say that he always shares a piece when he has a whole pizza, but this was only a few pieces. I didn't blame him for not sharing.

The next thing is that when she gets in that 'Kalisha mode' she can't always pull herself out and it escalates. I'm sure when he couldn't stand her hassling him about his pizza any longer, he took her phone. (That is her consequence when I am dealing with her, so he thought it would work for him, too)

That's when she called her dad. He probably could have talked her off the ledge if he had tried, but of course, he didn't. His solution was, "Call the police."

AND, of course, she did. Now, we have 3 people in this story. ONE of them is supposedly an adult. I'm going to stop right there, because my blood pressure is beginning to rise as I write this. Let's just say I was NOT a happy camper and 98% of my anger was going to be directed at the OLDEST one.

 

So, as I am traveling north, I asked, "Did they show up?"

"Yes, but I told them it was all a misunderstanding and everything was okay now and they left after they wrote down some information."

 

"Kalisha, go to your room and stay there until I get home. Understand?"

"Yes."

She was in her room when I came home. We discussed the entire scenario. Of course, by this time, she was rational again and even told me, "That was like crying wolf and if I ever really need the police, they might remember this time." I assured her they would respond the next time, but she did have the crying wolf idea right.

 

She wanted to know if I was going to call her dad and yell at him. I exercised a huge amount of self-control...I didn't call. (Are you proud of me?) I didn't think it would do any good. There is a FB cartoon that states, 'You can't fix stupid.'

I will just leave that there.

 

Consequences are Such a Pain

Kalisha volunteers every Tuesday morning at a Christian preschool in our city. She loves being there and obviously, the feeling is mutual. She gets to read to a certain age group and we all know how much she enjoys that.
When she first learned to read, she would read a few sentences and then turn the book around to show the pictures to an imaginary audience of children.

 

This week, her schedule became unmanageable for her. Her BC, who always comes on Monday at 8:30, could not come until Wednesday at 11:20. Kalisha knew about this change for 2 weeks and was good with it. However, when her staff person who takes her to the preschool on Tuesday, called about an auto problem and could not come until Wednesday, things started downhill.

She agreed to going at 7:45 so she would be home for the second app't. but I should have said, "Why don't you think about this for a few hours before you agree." but I didn't.

She chose to go to bed later than she should have but was up at 6:45 to shower and dress. So far, so good...but not for long. She texted her staff person, telling her she needed to be home by 10:30 (no, she didn't) and making various excuses why she needed to be here.

I knew a train wreck was about to happen and I did not want that at the preschool.

She simply did not go to the preschool (this was agreed upon by BC, staff, me and Kalisha) and waited for her BC at 11:20.

Consequences for not keeping a commitment are loss of phone and computer for 24 hours. Painful, really painful for Kalisha. However, she didn't object; only to ask if I could let it slide just this once :). I did not and before you think I am a heartless person, here is the reason: I have let consequences slide a few times, but I know the next time there are consequences, she is quick to remind me, "You let it go last time."

Yep, not going there. Sorry.

Reading EVERY Word

Kalisha loves to read. She currently has at least 15 books checked out from the library.

 The stack on the table are the ones she is currently reading. I have written in the past how she reads 5-6 books at a time; one chapter in each one and then she starts with the first one again when it is her next 'reading time.'
She has certain times during the day when she has to read.
She also likes to read aloud. That is ok with me, most of the time. If we are watching TV together, she reads aloud during commercials, then she closes the book until the next commercial. If it is a program she doesn't care about watching, she reads to herself between commercials so I can watch it. I don't watch many programs, but as we watched the Colts game yesterday, she would read during every commercial. It is a bit annoying but probably better than the commercials anyway.

 

The ones she hasn't started yet are in her bookbag. They are there because her mother gets tired of seeing 15 books on the floor by the chair or couch.

If you are regular readers of this blog, you already know those facts. However, last week, she amazed me. She really does like words and perhaps the sound of the words swirling in her head.
I purchased a paperback for me to read this Christmas season. It is 4 stories, loosely connected from one generation to the next. It has no pictures, very small print and 397 pages. Kalisha asked if she could read it. I said, "Of course, but it might be boring for you." (I had not read it yet so I was hoping there weren't any steamy love scenes in it)

I really didn't think she would finish it and I wasn't sure if she would 'get it.'

When she used to read books I had read, such as Little House on the Prairie and Boxcar Children, I would occasionally quiz her to see if she had retained any of it. She could nearly always, give me a fairly accurate, Cliff Notes version.

She stuck with this book. She read every word, probably 50,000 at least. I was impressed. I read it one afternoon (when I start, I finish, if it holds my interest) and later asked her a few questions about some of the events. She didn't know the answers. That's when I realized part of her reading is just to see and hear the words in her head, even if the sentence structure may be difficult. This novella would have been difficult for her because due to the time periods, there were words she has probably never seen or heard. I praised her for finishing it. I don't think I would read that many chapters of something I didn't understand. It would be similar to reading a medical journal for most of us. She is my daughter for sure; she loves words. YAY

The Rest of the "Tooth" Story

In the last post, I told you about Kalisha needing her wisdom teeth out and that she finally accomplished it. I want to tell you the rest of this saga.
Before her appointment, she watched hours of YouTube videos of people having their wisdom teeth removed. Then she watched just as many of them trying to talk, slurring their words and saying ridiculous things after surgery.
She wanted her nephew to accompany us to her appointment so he could video all of her silly words and garbled speech while she was still a bit 'out of it.'
She also talked to my friend (her friend, too) Marilyn, in the weeks preceding her app't. I believe all the information was more meaningful coming from someone other than Mom. Marilyn was very patient, answered all her questions and volunteered to accompany us to the appointment. She also took Kalisha out the night before for her "Last Supper" since she couldn't have anything to eat after midnight.
Marilyn picked us up (even Jacob, the videographer, who is definitely NOT a morning person). Kalisha didn't complain or say she wanted to go home. She watched the video, which of course, lists every possible thing that could go wrong. Yikes. Then it was time for everyone to leave the room. Oh, no, I didn't want to leave my baby there, knowing she was a bit apprehensive. But I kissed her and told her I would see her when she was done.
It didn't take long and she was in the recovery room. Now here's the funny part.....all of her planning and having Jacob there and watching all those videos was for naught. She did not say a word; not one. We asked her some questions just so she could say something we couldn't understand. Nope. Not a single sound.
She was a very good patient, doing everything she was supposed to do. Ice bags, mouth washes, pudding, jello, popsicles, mashed potatoes. This picture was taken the day after surgery.

As you can see, she is still a bit chipmunk-cheeked and looking a bit dazed, but pain pills do that to a person. She went back for a check-up on Wednesday. She asked if she could chew gum. The Dr told her she could go bungee cord jumping, sky-diving AND she could chew gum. She didn't say anything, but I know her thoughts were, "I only wanted to know if I could chew gum."

She is so happy it is all over and she never has to think about it again; the only regret being she has no video of her saying silly things. We tried, but there were no words to record.

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)

Kalisha's Birthday Party

Kalisha had a birthday last week. The actual day was a great success. She started her day by volunteering at the food bank, where the nice ladies gave her a dozen cupcakes. I was surprised when she got up willingly and went without a complaint. I thought she would surely use her birthday as a reason not to go.

Then we went to look for a new Indianapolis Colts stocking hat. One of the ones with the 'braids' hanging off the ear flaps. We found two: one had a 'mane' on the top. I let her pick and thankfully, she chose the other one.

Our next stop was a local Mexican restaurant where we had the best server in the world and where the entire wait staff came out to sing to her. That evening, I made her favorite dinner. All in all, a great day.

Yesterday, however, was a totally different story. It started with her not wanting to get up. She was scheduled to be a greeter at church and since that is a 'commitment' it qualified for losing all electronics and phone if she didn't go. After a text to her BC, who agreed with me, she got ready and got in the car. As we are going, she tells me, "My commitment is only to greet. When I am done, I will go sit in the car. I can hear pastor's sermon and the music from the parking lot." RIGHT!

The situation digressed from there. She told everyone who would listen all about her troubles. Part of me doesn't care that she tells everyone and part of me, (if I'm honest) gets really ticked off when she does that; especially to people who may not understand the situation very well.

She was supposed to have a 'family' birthday party in the afternoon. I had baked a cake and we had ice cream, etc. She had all of her Colts plates, forks, napkins, etc from another year to put on the table.

Because she was being bullheaded, she didn't help with one single thing. She didn't put things on the table, get the cake out, put candles on it, nothing.

Then she invited her friend, who I was sure was only invited because Kalisha wanted a McDonald's gift card and this friend had said she would get her one. She was chronologically celebrating her 29th birthday, but emotionally, it was still all about the gifts and she was being 10 or 12. When she thought her friend wasn't going to come through with the gift card, she called her dad and told him she wanted a McD's gift card. By this time, I was thinking she might not live to see another birthday. (Just kidding, ok?)

Well, all things come to an end and so did her obstinance. We had a good laugh at her attempts to blow out the candles. I'm not sure if that qualifies as a small motor skill or not, but it took at least 25 trys to blow out 18 candles. Obviously, blowing just air is not something she does well. She can't whistle either.

It was, at best, an emotionally draining day for me, and probably for her, too. I really dislike it when we are at odds with each other. She never yells (unlike me); maybe it would be better if she did. She just becomes totally obstinate and unreachable. No matter what you say, she has these 'blinders' on and only thinks in the moment.

We do not go to bed angry with each other. We usually talk about the situation and both ask for forgiveness and go on. That's what it's all about, isn't it? Just keepin' on, keepin' on.

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!!

Indianapolis Colts Pillow Pet

I could hardly type those 4 words as the title of this post because I have heard them so many times in the last 2 days, I even dreamed about them.

This saga started on Christmas day. Kalisha was happy with her gifts, although even after all these years, I still never quite get used to the lack of much emotion. She opens a gift, says thank you and lays it aside. Then she opens the next one, says thank you and lays it on the stack. 'Hope springs eternal in the human breast' is a quote I like to use. I am always hoping one day she will open something and be ecstatic. I know that is definitely not in the autistic person's nature, but one can always hope. This year she really wanted a Colts shirt with # 12 and LUCK on the back. Obviously, so did everyone else. It took a lot of searching, but with God's help (literally) I found one on the 24th, and it was her size. Yesssssss!

I could hardly wait for her to open it. She did, smiled and said thank you. No, no, no! I wanted to say, "You are supposed to be jumping up and down and screaming and running off to your room to try it on." Why do I expect that when I know it will never happen? I did ask her to try it on and she said she would before she went to bed. Arrrrrghhhh! When I expressed my disappointment, which of course, I had to do, she immediately put it on. I am such a pain, I know.

Okay, now to the rest of the story....a friend of hers who is also a Colts fan, sent a picture to Kalisha's iPhone of a Colts pillow pet she had received for Christmas. Naturally, Kalisha wanted one just like it. I tried to dissuade her by convincing her it was pretty ugly (which it is, sort of) but she wasn't buying that. Nothing was open on Christmas day, so she spent a few hours writing in her notebook.

Wednesday afternoon I was trying to take a nap and since she was using the landline, she was in the living room. Twenty-three times (because she was cut off twice) I heard her say, "Yes, do you have an Indianapolis Colts pillow pet? No, a pillow pet. Indianapolis Colts. C-O-L-T-S, you know, like the football team?" "Okay, I will hold." When they transferred her to the correct department, she would start over, "Yes, do you have an Indianapolis Colts pillow pet? In-di-an-a-po-lis. Football. Okay, how much is it?"

I never did get a nap, because even when she found one, she continued calling because someone else might have one on sale. (The stupid things were $29.95...are you kidding me?) Some stores were out, some didn't carry them, some only had one, and the Meijer's at Maysville had theirs on sale for $17.00. Woo-hoo, but that is too far to drive, she decided. She knew that was what I was going to say.

Kalisha is a tenacious person. She never stopped dialing until she had called all 21 stores on her list. We had to go North this morning anyway, so I told her we would stop at the Lima Rd. Meijer's. They had one left and it had been marked down to $17 also. It was full price yesterday when she was calling, so I know God had them mark it down before we got there so I wouldn't have to listen to her call all 21 stores again to see if anyone else put it on sale. She was willing to return a pair of jeans so she could purchase him. It was a good thing she wanted to return the jeans and not the LUCK t-shirt or that might have been a mountain I would have had to climb.

Okay...so he's not so ugly. Obviously he came home with her and now resides in her Colts Museum, also known as her bedroom.

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?

Holidays Are Stressful? Really?

rochelle hartman (cc)

Christmas time, one of the most joyous times of year, can quickly turn into a pull-out-my-hair, if- someone-gives-me-one-more-fruitcake-I’m-going-to-throw-it, when-will-this-holiday-finally-be-over season. When we should be celebrating the birth of the One who came to save us, we are stressing over piles of wrapping paper, baked goods and party invitations. The busyness steals our peace and robs us of joy. So how can this holiday season peaceful? How can we remain joyful?

Everyone talks about how stressful the holidays; lists to make, cookies to bake, gifts to buy, decorations to put up, parties to plan, school programs to attend, and practices for the Sunday school program. They all demand our attention and of course, we have to do ALL of them.

Do we? Really? Do our children need a myriad of gifts or would a few be all right? I know, I know; we just can't bring ourselves to cut back even when our lack of funds forces us to. We find a way to make Christmas "meaningful" to our children, even if that means skipping this month's mortgage or rent payment or car payment.

It may be even more so with parents of special-needs children. After all, life doesn't seem fair for them all year long, so we need to level the playing field and get them everything they want at Christmas time. When I ask Kalisha to make a list for me, she just starts putting 'things' on it because that is what she thinks she should do. If we go over her requests one at a time and I ask if that is something she really wants, she invariably says, "No, not really."

I can't speak for all special-needs children, but many would rather have the gift of time spent with someone of their choosing, and perhaps see a movie and go to McDonald's. I am definitely not suggesting that an outing would replace all gifts under the tree, but it would probably replace half of them.

I used to be guilty of talking her out of something she wanted because I didn't want her to want it. For example: Kalisha loves DVD's and owns many of them. When asked, she would name one she wanted and it usually was a Disney or some other kids movie. For many years, I tried really hard to make her 'want' a more age-appropriate movie (her chronological age). She can be easily persuaded, so of course, she would agree with me. Then she would never watch the one I bought. Somewhere along the line, I gained a little sense and got the ones she wanted. After all, I remember receiving gifts that the giver thought I should have, even if that wasn't what I really wanted; and I hated that, so why do the same to my own child?

I try to make just as much fudge and cookies as we need for gifts and only a few more. That way we don't have to look at all of the extras and of course, eat them. We are trying to eat healthier, so it helps to only make half the quantity.

Our family exchange has helped the budget immensely, too. Everyone brings one gift that costs $2 or less, wrapped. It must be usable by either male or female. You may think that would never work for your family, but I guarantee you it will be the highlight of the get-together and yes, you can find some great things at the local Dollar Tree or Dollar General stores. The younger children will make their own shopping choices and love it.

Our group ranges in age from 66 to 4, and everyone has a great time unwrapping and swapping gifts. It eliminates the expense, the huge amount of time spent shopping and wrapping, and the search for the 'perfect' gift. They are all perfect gifts. AND nothing has to be returned the next day.

Everyone can use a little help during the holidays. Teach your children the difference between giving and getting. Perhaps you could ask the parents of a special-needs child if they would like you to spend some time with their child while they go shopping for a few hours. Believe me when I say that crowded stores and malls are difficult for children with sensory issues. Too many sights, sounds, people, noises, smells and congestion. It is not a ho-ho time for them.

What do you do during the holiday season to make things easier?

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!

Play It Again, Sam

I realize that anyone who reads this blog probably becomes weary of reading the same posts about Kalisha's obsession over something. However, this blog is about a person with autism, and obsession is a way of life that is often consuming. I guess I should be happy that she at least changes obsessions once in a while.

Have you ever heard a 3-year-old who wanted something and wasn't getting it fast enough? Something like this: "Mommy, is it time to go?" "Huh, huh?" Mommy, did you say we were leaving soon?" "Can we leave right now?" "Why not?" "I'm ready now, Mommy." "I don't want to wait until Daddy gets home." "Can we leave now?" "Please, please?" "Why can't we leave now?" " Look. I'm ready." "Let's go no-o-ow." "Why can't we leave now?"

You get the idea.

Kalisha doesn't talk like that, but she cannot put something out of her mind once she is set on it. Last week, a lady became ill during our church service. Kalisha was one of the first ones out of her seat and wanted to help in some way. She was immediately praying for Delores (not her real name), and spent the day very concerned about her. She emailed someone from church to check on her and find out the hospital room number. Once she had it, she wanted to visit her in the hospital (obviously, she was not in critical condition). I did not have the time on Tuesday to take her so she asked her 'community helper' to take her there. The lady had been released and sent home. I had told Kalisha to call first to make certain she was still there. She didn't. She did stop and buy her a card. She wrote all kinds of nice things in the card and then needed a stamp. Later she saw that Delores was on FB so she started sending her messages there. She called her at home once.

All this time, I have been talking to her about 'smothering' Delores and how she was going to relapse due to stress if Kalisha didn't leave her alone. She always tells on herself. I would never know how many times she texted her or messaged her on FB, but she always tells me. I told her that if she didn't stop, her consequence would be to lose her phone...a fate worse than death to her almost.

Kalisha says, "I'm not obsessed with her or anything."   

Really???? You could have fooled me. At one point, I told her she was obsessed with being obsessed. That put a really puzzled look on her face.

I ended up taking her phone on Saturday. She was not happy with me. She doesn't yell or anything, she just gets sullen. I drove out to a friend's house to see their new baby. She didn't want to get out of the car. Okay, sit there. On the way home, we stopped to see another friend who had been in an accident. Although Kalisha was very concerned about him, she wouldn't go in to see him either. I think she believes that she is punishing me somehow (for taking the phone) by not participating in anything. It really didn't bother me. If she wanted to be bored and sit in the car, it was okay with me.

When we got home, she didn't want to eat either. Okay. She kept asking me if we could stay for Bible Class on Sunday morning. It is between services and since we always attend the early service and Delores goes to late service, it was her way of possibly being able to see Delores.

On Sunday morning, after a good night's sleep, Kalisha awoke with a whole new attitude. She was ready for the Colts football game on Sunday evening, but was still thinking about seeing Delores. As it happened, she did see her and had a chance to ask her how often she could call her. Now this sweet lady said that she didn't mind Kalisha calling and she could message her on FB any time she wanted.
  
My first thought was: Damn!! I wish I had been able to speak to her first, so I could have had her set some boundaries. I told Kalisha that, although it was very nice of Delores to say that, she still couldn't call her more than once a week. On Monday, her Behavioral Consultant discussed the whole scenario with her.

Can you see how time and thought consuming it becomes when she gets 'stuck' on someone or something?

The phone consequence works very well and definitely gets her attention. Sometimes, she can self-talk herself out of the obsession, but many times she can't. The strange thing is this: Now that she has seen Delores, talked to her, and has permission to call her once a week, she probably won't.

I don't have the answers to things like this. We just keep on, keeping on.