>Hey, you, check this out

>http://blog.autismspeaks.org/
I’m a little short on words today, and I have a lot to do, so I’ll just leave you with the link. In case you thought you’ve read that before, it’s a blog post from August of ’09… I stole from myself. But when I though, “What do I want a ton of people to read?” I just knew that was it.

Advertisements

>Worth it?

>I hate to admit this, but I carry around a quite a bit of guilt. All the time.

I know it’s not really necessary, because I can’t help the way I am, but the thing is that I know I’m more difficult than the average girl. I know I require more from those who love me. That I take more patience. That I’m flat out harder to love.

Once I asked Mom if she wouldn’t rather have a second regular girl than me, and she said some to the effect of, “NO WAY!” She wants me, and no one else.

But there’s something I desperately want to hear from those closest to me. I know that by putting this out there, they might now tell me exactly what I want to hear. But because I told them I want to hear it, it sort of takes away the meaning, doesn’t it? Oh, well. I’ve thought about it, and I’m just going to put it put there anyway.

I want to hear, “You’re worth it.” Yes, you’re more difficult at times, but you’re also kinder, more genuine, and more innocent, more something. Maybe it’s not true. Or maybe it’s supposed to be obvious and I should already know it. The thing is, I don’t know. But I do wish.

Off the subject, but could someone please teach my cat not to knock puzzle pieces under the puzzle with her tail? Constant battle.

>Well, we tried

>Mom talked to the psychiatrist (Dr. J) yesterday and they decided that my Geodon needs to go back up to 60 mg during the day. I can’t but feeling like I failed. I desperately want to be on the lower dose, because I’m so much more alert and “with it” minus those 20 mg. I wish I could handle myself appropriately. But instead, I’m more anxious, losing words all the time, not tolerating frustration well at all, crying more, melting more, clingy… a whole list. And lest you think that I noticed the difference and requested that my dose be increased like a mature adult, that’s not how it worked. It was me waking Mom up mid-melt down, and her noticing all of the above, and calling the doctor herself. I just happened to transcribe the email Mom wanted written to Dr. J and so I know what she said was becoming problematic. Now that I know, I can look back and see it, but I never would have thought of it myself. It’s frustrating to realize what a long way to go I have.

In other news…

I got testing results back, and my functional IQ is about 70, or three standard deviations below average. That puts me functionally in the mild-moderate MR/ID range. A bit disheartening, but hey, I can just work hard and hope that this number increases with age.

Leigh informed me that Jesus was an INFJ (Myers-Briggs Personality Type). It’s the rarest personality type (less than 1% of the population, I read), and Leigh and I are both INFJs.

Speaking of Leigh, guess who came to my house today? We saw my kitty, painted our nails (she was on her way to a wedding), did her laundry cause she spilled coffee on her white shorts in the car, and made quesadillas. Oh, and she brought Tigger (a stuffed animal she got in Disney World last October, when we went, that I’m rather attached to and like to hold onto because it reminds me of Leigh).

We have company coming tomorrow… friends of my parents; a couple and a single man. I’ve met the couple and they’re very nice (the wife called Mom just to ask if I would be here, which made me feel good) and I haven’t met the guy. I’m really nervous because of my words. I hope they like Elsie.

This is post #202. I wanted to mention when I hit 100, then 200, and… forgot. They were important posts that would have been interrupted by such a notation. So, I tell you now. Has anyone been here since the beginning? Leave a comment and let me know if you have, cause that’s pretty cool.

>Do you hear me?

>Sometimes melt downs are sensory based. Sometimes they’re because something is done the Wrong Way instead of the Right Way. Sometimes they’re seemingly random.

And then there are the worst kind. These are the kind that build up all day over half a dozen little things. My favorite doctor is leaving the practice to a place I can’t follow her. I had 3 appointments and work all in one day. The therapist said it was fine if I used TTS but then essentially didn’t let me. I didn’t feel heard by the psychiatrist because she said I was doing well and I feel like I’m falling apart. Three cats were put down today at work, and we found out yesterday.

I got home and melted, big time. I even cried and melted somewhat at work when one of the to-be-euthanized cats didn’t want to eat but rather wanted me to pet and cuddle him. I went and held my favorite cats and made it through work, but got home and lost it. Picked a fight with Leigh (which I always do when I melt; I get upset about irrational things or things that don’t matter). Woke Mom up to stay with me. Didn’t want the kitty for a time.

Normally, I lose my words just before, during, and then after a melt down until I can sleep it off. But today, I woke up, and they were still gone. It’s fine to talk to Mom, although I’m definitely using fewer words than usual, but the chiropractor, library, and research study were all off-limits. No one wanted to let me type, either, which frustrated me immensely. At the study, Mom called to tell them I couldn’t talk today, then they wouldn’t let me type, but they continued to ask me questions expecting me to answer. I did my best, but I’m all stressed and upset having spoken when I didn’t want to. It’s not fair to make a girl talk.

I can’t help but feeling like this is a bit of a turning point in my speaking. I’ve never liked it, and over the past year and a half I’ve been doing it extremely reluctantly. I asked Mom, what if I just stop, and everyone has to deal? Yes, it would be hard for people, but you know, it might just have to be. I’m not going back to the hospital over stupid words, especially when I have another, perfectly acceptable, way to communicate. If people don’t want to hear me in the way I can talk, then I have nothing to say.

>10 ways to help your child with autism

>

Well, 3 AM has come and gone. I just realized that I didn’t take my PM meds (which includes melatonin)… and therefore I’m a solid hour away from any kind of decent sleep. I’m also ridiculously itchy (no, seriously, you have NO idea) because I was so attracted to the little colored sprinkle-covered cupcakes at work that I just had to have 2 of them. In the meantime, I thought I’d write some. This is probably a good time to mention that I left my glasses on my beside table and therefore may or may not catch typos, of which I am the queen. Sorry in advance.

These are in no particular order (meaning, as they pop into my mind), though I will number them 10 to 1. I will use the pronoun “he” for the sake of simplicity and statistics.

10. On a day when he is particularly hard to handle, make a list of the things you love about your child. Share it with someone (spouse, coworker, siblibg, pastor, friend; if you’re still stuck, heck, I’ll listen). But how does this help the child? It reminds you of why you love him so much, reorients your attitude, reminds you of why you do so much for this little person. Your improved attitude will have a positive effect on your child. I promise, we can tell when you’re upset with us.

9. Allow your child a chunk of time to engage in or talk about his very favorite thing with you, completely unbridled. People with autism spend so much time either self-redirecting or being redirected, that it often feels like we never get to really dig into what we love without the accompanying being cut off or redirected. Personally, every time I talk about cats, it’s overshadowed by the nagging though that Leigh or Mom or Sister doesn’t really want to hear about them. They certainly never ask about Elsie. So for a bit of time, just let him be obsessed. Obsess with him. Pretend that what you’re hearing is the most fascinating thing you’ve heard all week. This subject is where he shines, whether it be bus schedules, the early years of the Beatles, or Thomas the Tank Engine.

8. Label emotions for your child early and often. Last night, an unimportant but abrupt change in plans left me frazzled. First thing’s first; I picked up my kitty. Then I said, “Mom. I’m upset.” No response. “Mom, did you hear me? I’m upset.” The words felt unsettling. “Mom, I’m telling you something. I’M UPSET!” It struck both my mother and I that this was the first time in… ever, maybe?…. that I’d come to her and labeled an emotion without prompting and without just acting out. This should not have taken 22 and 7/12 years to happen. Don’t let this be the case for your child. Ask your child frequently, “How do you feel?” You may need to offer suggestions or options at first, but never stop asking.

7. Model, model, model. Rinse and repeat. Model language, dealing with emotions, and facial expressions. Overexaggerate and explain, step-by-step, what you’re doing and why you’re doing. “Do you see that my eyebrows are pointing inward and how my mouth is puckered? My face is telling you that I’m angry.” “Hey, let’s get your new school shoes when we go to the mall to get so-and-so’s birthday present. People say that we’ll ‘kill two birds with one stone.’ That’s a silly way of saying we’ll get two things done with one action.” “Oops; I expected the ice cream shop to be open. It’s probably closed early because it’s a weeknight. I feel very disappointed about that because I was expecting ice cream from this shop. But we can either go get ice cream somewhere else, or we can wait until tomorrow. Which would you prefer?”

6, Limit choices. If your child takes an hour to get dressed in the morning because nothing feels right, step 1 is to reassess his wardrobe and make sure that he owns only clothing that feels comfortable. Style comes second. That makes step 2 possible, which is to say “You can wear jeans or sweatpants today. Which would you like?” Do not allow him to pick any outfit from amongst 10. When you go to the store to spend his birthday money, rather than allowing him free reign of the toy section, say, “Would you like a game or some Legos? It’s your choice.” Obviously pick 2 things you know he likes, but do not allow him to choose Option C. Children, especially those of the autistic variety, become very easily overwhelmed with too many choices. For a young child, 2 is plenty. Expand the number of choices at your own discretion, but even as an adult, your child may struggle with this and need you to artificially limit his options.

5. Be flexible. If your child prefers to sleep on the floor rather than in his bed, simply move the mattress to the floor. If he complains that his pajamas hurt, let him sleep in his underwear. If he wants to watch pre-school directed television when he’s 18 years old, who’s he hurting? Realize that children with autism, by the nature of their developmental disability, show very scattered skills and abilities. He may be able to drive like a 16-year-old, follow stories like a 6-year-old, read like a 10-year-old, and express emotions like a pre-schooler. Don’t look at your child as the age he is but rather as the age at which he functions in each specific area. Cater to these as best you can, because your child cannot help it.

4. Use play to engage. If your daughter likes dolls, a dollhouse is the perfect toy with which to practice language, emotions, and interaction. If your son likes cars and trains, Thomas the Tank Engine characters have faces and speak and can be used to act. Many children like plastic animal figurines, which can be used in the same way. Encourage this type of play with an adult, older sibling, therapist, peers… all of the above.

3. Communication options. Regardless of how verbal your child may seem, teach him at least one alternative method of communication (PECS, sign language, typing, text-to-speech, etc). I was very verbal at a young age (2, 3), but the topics on which I can be verbal have always been limited. As I’ve grown older, I’ve learned to take fragments of things I’ve either said in the past or have heard others say and piece them together so that it sounds like intelligble speech. It’s really complex delayed echolalia. Very little of what I say out loud is both my own and novel. In order to produce new ideas, I need to write. In order to process, I need to write. In fact, and this may not make sense, I often do not process what I say. I can piece the fragments together and form a response based on what I know I should say, but most often, it would be impossible for me to repeat what I’ve just said to you, because I never processed it. Part of my brain gets left out. Even if it appears that your child is keeping up verbally, if he is on the autism spectrum, there is a good chance that a second means of communication would serve him well.

2. Don’t be scared of different. If I want to use a TTS in public and I’m not afraid of “what people will think,” you had better not be either. If your child wants to wear clothing that he finds comfortable and you find unattractive, and you’ve explained that “people typically do not wear clothing like that. They may look at you and think you are strange” and your child has no problem with that, then let him be. If he wants to text and wear headphones during church because it’s the only way he can possibly stand to be in that crowded room right then, and you’re afraid people will think he’s rude, then I question why you’re trying to impress people at church. If you know your child can only process auditory information when his hands are doing something (for me, it’s Spider Solitaire on the computer), but it looks like he isn’t listening, I ask you: Would you rather have him hear you, or look like he hears you?

1. Be consistent. If you’re upset, stressed, scared, overwhelmed, and yes even exuberant, keep your expressions of intense emotion to a minimum. They will confuse your child. Children with autism need their parents to be the same, above all else. It’s okay to practice labeling and expressing emotions, but only insofar as your child can understand them and can do the same for his own emotions. I am grateful for almost nothing more than the fact that my mom has always been rock steady in every way. You can use a lot of words to describe people on the autism spectrum, but “forward thinking” isn’t usually one of them… we live in the here and now, and if here and now is confusing or not right, then our worlds crumble. We can’t see beyond the right now to the what will be. We like routine because it’s consistent. Bedtime needs to have the same routine, day in and day out, as does wake-up time, meal time, and time to go to the grocery store. It may be boring to you, but it will make for a much happier child. If something diferent is going to happen, please let us know what to expect and remind us several times. Check for understanding.

I don’t hve an intelligent way to end this, because an hour and a half later, my melatonin is kicking in… big time.

Takin’ my kitty and goin’ to bed.

>Midday melt down

>I woke up to my mama laying beside me in my bed and quietly asking me if I wanted to go shopping. My kitty came in and said hello before I even got my eyes open. It was peaceful and wonderful and my favorite way to wake up.

I ambled into Mom’s room and laid on her bed with the cat for a while. Then I headed downstairs and woke up.

Sometime during the morning (er, I woke up at noon…), the mail came. I got my new (purple) Medic Alert bracelet (I got a sponsorship and therefore didn’t have to pay anything!) and my test results from the doctor. If you’re curious, the results explain that while some of my adaptive skills are average, in other areas (social, communication, work, and I forget what else) I function as a person with mild-moderate intellectual disability. I’m still trying to get a full scale score, and I’ll let you know what tale it tells when I do get it. The GADS says that it’s “highly likely” that I have Asperger’s and “possible” that I have autistic disorder. This round of testing went with Asperger’s as a diagnosis.

Mom talked on the phone to my sister, who, as it turns out, has an old iPod Touch laying around. I think it’s actually her husband Matt’s. Anyway, they will bring it in August, and I can use it as a TTS device… yay!

After some hang out time with the kitty and my new doll, it was time to go to the uniform store. Since I only work 3 days a week, my boss says I only need one uniform. Except that when I move out I’ll only be able to do laundry weekly, so Mom says I need 3 uniforms. She was happy to buy them for me, and therefore get me the kind with elastic in the waist instead of drawstring, so we headed to the uniform store. While there, we found cool white nursing shoes without ties that are extra comfortable and special moisture-wicking socks too. Now I can have special work socks and shoes that can live in the basement while at home and thus not give Elsie any kitty diseases that I pick up on my shoes/clothes while at work. Overall, just a good idea.

After the uniform store we went to Borders (bookstore), where I ordered Temple Grandin’s The Unwritten Rules of Social Relationships. I’m excited for that and hope it’s helpful. She personally recommended it to me in her letter, so it’s high time I got around to reading it.

The pet store was next to the Borders, so of course we had to go in to check on my cat from work that is up for adoption there. Henry Lynn is gray and white and 3 years old, kind of chubby, and very talkative. I told the employee that I worked where I do and that Henry Lynn was one of my cats, and she surprised me by saying, “Would you like to see her?” She got her out of her cage and let us play in the little room with Henry Lynn for 20 minutes! It was so good to see one of my kitties (Henry is a favorite) that I haven’t seen in 2 weeks!

We shopped at a department store for a bit (acquirings there include a wooden puzzle I got for Mom, cause she loves them, and a new Lydia- (comfort) and Mom- (style) approved outfit for me. It’s nice (albeit rare) when we can both be happy with what I’m wearing.

Then, it was time to go to church. I always get a little anxious before church because it’s loud, and I knew I didn’t have my earplugs in my purse. I was super thirsty and asked Mom if we could stop for a cold drink. The only place to stop was the grocery store. This is where the problem happened. I went in with $1.50 to get a 20-oz diet soda. First, a man yelled at me when I accidentally cut in line. Then, the soda was $1.59. I tried to put it back, but the cash register started beeping like crazy, so I hit “cancel sale” and it said, “Help is on the way” a million times and wouldn’t shut up, but after 5 minutes, no help had come. I was so overwhelmed I started crying, left the soda and the machine, and ran out to the car. I told Mom how much I hate grocery stores, as if she didn’t know. I told her I’d just wait and get water at church, that there was no way I was going back in there.

I hate how a simple thing can ruin a whole day of fun for me. I try to recover fast, but it’s not easy. I get out of sorts so quickly. I ended up getting my soda at the gas station (much smaller, quieter, easier to navigate), and church was good, but I still feel funny from the grocery store incident.

I’m trying to channel Leigh here. “Don’t let one person/thing ruin your fun.” That’s what she would say, and once reminded I’m usually pretty good at it, but melt downs sure to get in the way.

Sounds like I need a puzzle and my kitty and a good night’s sleep, and I’ll wake up happy again tomorrow. Let’s hope so.

>The post of acronyms

>Cindy Lou Who can’t be my kitty.

She is a feline corona virus shedder (CVS). About 80% of cats have the corona virus at some point during their lives, and they “shed” on and off. CLW is currently shedding. She’s perfectly healthy, although it usually just causes diarrhea.

The problem with CVS is that it can turn into FIP (don’t ask me what that stands for; I can’t remember), which is a deadly condition to cats. It’s rare, but it happens.

At work, we wear gloves to clean the litterboxes of CVS cats and sanitize our hands after petting them. We also don’t let them out of their cages, except in a special room just for CVS cats. Also, I change my clothes and throw them in the washer the second I get home, and put on clean clothes in the basement, all before I even touch Elsie (yes, it’s hard not to touch her for those few minutes!).

But there is another precaution for CVS cats, and this is the one that breaks my heart. CLW has to be fostered and adopted as an only cat. I can’t take her. It’s to protect Elsie, and believe you me, I would never put my baby in danger, but I’m still sad because I love CLW as if she were my own. Still, as I sit here and imagine her being adopted, I know I’ll be super happy when it happens.

Please pray for my CLW. This isn’t going to be easy for her… most people with cats own multiple cats, and who wants an underweight 11-year-old, black cat? She has so much stacked against her. But if we all pray for her, I bet God finds her the perfect little old lady who will sit and pet her all day and give her yellowfin tuna.