Learned a new trick for the OCD speech repetition

Caitlin went to the zoo yesterday with my ex-wife and her grandmother for her half-brother's first birthday party.  She said she had fun, took a picture of a lion and a tiger, and she seemed happy...but she came home tired and overwhelmed, and ended up having a meltdown before bedtime.  The meltdown ended in tears, but at least she didn't throw things around or break anything.  It was just constant repetition, total frustration, a shutdown, then screaming and crying.

Kids have tantrums, and they're usually over something they want or attention they're not getting.  With a meltdown, it's about sensory overload, and kids with autism have to do something to get their minds in order, something to calm the mental storm to get back into a more peaceful, pleasant mode.

I learned a trick today, and the next time the repetition starts that marks the meltdown's beginning, I am going to try it, because it works with the OCD repetition.  I learned it from one of the aids at Caitlin's school.  They carry a whiteboard around, and every time Caitlin starts repeating something, they write it down.  Instead of Caitlin repeating it, she will read it from that point on.

I have a whiteboard somewhere around here, but I didn't have it handy when she came home from school, so I grabbed a notebook.  I wrote down things she repeated.  It calmed her very quickly and made her smile.

I'm going to work with this trick and see if I can make it progress to her writing it down herself, or perhaps typing it into her laptop.  Perhaps she can type it to me in a chat client, and I can type back to her...and make that interaction progress into communication.

Labor is not the worst pain there is

I understand that labor is painful.

I've witnessed women in labor, and yeah, it hurts. But some people act like it's the worst pain ever, and it's not. No, it's not. It's fucking not. Stop that. I can give you an example.

Every woman I've known who has had a kidney stone tells me that it's more painful than labor. 

I've had that pain. Now, this isn't about one-upmanship; it's about combating ignorance. Someone bashed someone else for whining about a pain that I'm pretty sure is similar to one my ex-wife had, and I'm also certain that I had the male equivalent. In addition to that one, I've had three other pains worse than a kidney stone. Here are the worst pains I've ever felt in the order of severity:

 1. Four-week long head pain from fluid buildup on my brain. It was debilitating. There was nothing else in my world but pain. I wouldn't wish it on anyone. I know what migraines are. This was worse. My mom knows what I'm talking about, because she had a brain tumor. It's like that.

2. Hot coal embedded into the skin of my right bicep. This one might be at the top, but it didn't last four weeks. I was ten years old when it happened, and I still remember how harsh it was. I can't imagine what people who have had severe burns over more of their body have felt.

3. Testicular torsion. This was the pain I had last July, and it didn't really go away for a month. I spent most of the first day vomiting.

4. The first six months of my chronic back pain. There were no comfortable positions. I got very little sleep. It was 24/7 pinched nerve pain. I am still in pain in that area of my back, and I get a taste of that intensity from time to time, but now it's more like a constant toothache-like pain in my back.

5. Kidney stones. These are what women tell me are worse than labor. My mom, nurses at the hospital (I was passing a stone at the same time as the testicular torsion, so I noticed it, but barely; I've now passed three), other women I know who have had them.

So yeah. I don't complain about my pain very often, but the comment I read set me off (I'm paraphrasing), although it was about someone else: "I gave birth to a 9lb 2 oz baby and you don't hear me whining." The person who talked about her pain simply talked about it; she wasn't whining, and the pain she's in? I don't know, but given the symptoms my ex had with her ovary issues, I would say it's a lot like testicular torsion, and childbirth has nothing on it. Bottom line: if someone is talking about pain, don't dismiss it out of hand. Even if you think they're whining, they're in pain--they're irritable. I know; I'm always trying to control my irritability, because I'm always in pain. It's been 19 years for my neck now, 10 for my back, and I think I stay pretty nice most of the time.

Help me change the world

Who wants to help me change the world?

It's just an idea I've been musing over at this point. I don't have the capital to do even attempt to begin, but what if:

-We built an attraction that would promote science in a place that is deficient of places that promote science. Anyone who is familiar with science centers knows what I'm talking about...but we make it a place not only where people come to explore science from modern and historical science exhibits, but where people can meet, socialize, drink, eat, read...it would have its own cafe and restaurants, as well as a library/reading room.

-Since people will be coming to see the place, we can seed the area economy by helping local entrepreneurs start restaurants, hotels, and other businesses related to tourism. But here's the catch: every business would have to model itself to pay employees a living wage.

-People will need to live in the area to work; commuting doesn't cut it for long if the distance isn't practical...so, new housing construction. More help to the local economy.

-Since the people living and working in the area will need goods and services, seed manufacturing and supply chain industries, and model them after the living wage, as well.

I don't know if it will work. I'm just thinking it might help a local economy and bring back the middle class in some part of the world. Anyone with me?

If this first goal is met, the project's first phase can begin, and another campaign to fund the venture capital to start the rest of the project will begin.

If you want to support this project, go to:

http://www.gofundme.com/8nvtos

Reflections on home therapy

While progress has been made in the area of providing autism therapy through insurance and through government sources, in many places, there's still an income component to the process of qualifying for it, and that usually leaves people like me out of the running.  However, I also don't have a lot of disposable income, so I have to do my own research and apply some therapy myself.  I have to become an amateur speech and occupational therapist to help my child's progress. I think it might be helpful to other parents to read about some of the things I've done to help my child along, so I will be doing articles from that angle.  This article is one of them.

When I first learned that Caitlin had autism, I started reading.  I bought a few books and looked up online resources.  One of the books (I do not remember which one; it has been years and I have all of my books in storage at the moment, anticipating my upcoming move) talked about socialization and eye contact.  Eye contact helps children with autism become more social, more affectionate, and more engaged.  It gave techniques on how to gain eye contact, and this one worked for us: I would choose a toy she recognized, hold it close to my face, and had her look at me before giving her the toy.  I turned it into a game with her--one she thoroughly enjoyed.  I worked with her for a few minutes the first time, then about fifteen minutes, then a half hour.  It wasn't long before she was looking me in the eyes.

An amazing transformation took place.  I have video somewhere of her fourth birthday, and if I find it, I will embed it here, because it really shows how she was before I worked with her.  She would not look anyone in the eye, only spoke in monotone, and had no expression of emotion whatsoever,  In a matter of days, she was starting to smile, laugh, and express herself as best she could.  She has a language delay; her vocabulary is huge, but her ability to hold a conversation isn't there.  We communicate, but we don't converse.  Still, she was showing positive emotion (and negative, of course), and even better, she engaged in affection.  She always wanted me to hug her and hold her.  

It's amazing to me how much progress she made, simply from getting her to have eye contact with me, and we formed a strong bond as a result.  It also helped her bond with other people later, because she could get feedback on how they received her from the expressions on their faces, which she wasn't reading when she wasn't looking at them.  How could she?  We can often process emotion from tone of voice, but what did tone of voice mean to her?  It was one more connection made, and it was huge.

Extended school year, moving, positive stuff

Today, I attended a meeting at my daughter's school to discuss the extended school year program.  Caitlin's teacher, Ms. Griest, went through all of the reasons why kids go through the extended school year program, most of which are academic.  It made me very happy to learn that none of those reasons applied to my kid, in spite of all of the school she missed this year.  She is progressing fine academically.  The main reason her school is recommending summer school for Caitlin involves behavioral issues caused by transitions.  Caitlin's behavior regresses when she takes long breaks from school (spring break, winter break, and summer break are the worst).

However, I'm moving in June.  The teacher is still giving me the recommendation, so hopefully I can take it to the new school district and get her enrolled there.  If it doesn't happen, there are other resources to explore in Pennsylvania, but it would be nice to get her acclimated to the new school environment.  I'll definitely be getting her private therapy after we move, and hopefully, somewhere to swim on a regular basis.  She loves swimming.  It's too late to get her into the camp this year, but one of the camps offers music therapy.  She showed excellent progress in a music therapy class in Michigan, so it would be great to give that another try. 

A few good things from the meeting: one, her teachers and principal just love her.  She might not be able to have a conversation, but she does comprehend things.  For another thing, she can type (she just seems unwilling to do so at home), and she likes it when people type messages for her to read while she's looking over their shoulder.  What I'd like to do is use a chat client (maybe develop one or find a free one) and type messages to her on her laptop, then see where that goes.  Finally, they expressed to my fiancee, who came with me to the meeting, that Caitlin got excited when talking about her.  

One more thing about Caitlin's school year that I brought up in the meeting was that I was happy to hear that Caitlin was instrumental in bringing another girl who was socially isolated out of her shell as the school year progress.  She hadn't been talking with anyone, didn't have friends, and didn't participate in class, but because of interaction with Caitlin, she slowly became more social.  Now she has friends and participates in class.  

Good news regarding my daughter

I wanted to share two bits of good news about my daughter.

First, she hit a personal care milestone.  I do not want to go into what it is, to save her future embarrassment, but I was a proud parent, and my fiancee was excited and proud, as well.  It was something that either she learned on her own, or her occupational therapy led to it. 

The second bit of news can be more public.  Until recently, my daughter had three speaking volumes: shouting, talking loudly, and whispering.  I tried telling her, "lower your voice", and she did!  I asked her if somebody taught her that, and she said, "Mrs. Doyle."  That's her speech therapist at school.

These two milestones came at a time when I've been a bit down about not being able to reason with my child the way other parents can.  And before anyone chimes in with, "I can't reason with my neurotypical child," yes, you can--they at least understand you, even if they don't accept your logic, advice, or simple word.  

She did hit a milestone last week that I did not mention: she started using people's names in response to "hello" or "hi".  So instead of answering, "Hi, Caitlin!" when people greet her, she now answers with, for example, "Hi Daddy!"  This milestone gives me hope for a meaningful conversation with more time and therapy. 

I just want to have a conversation with my kid

To the parent whose kid asked, "Why?" to the point where you finally said, "Because!  Enough!  Shut up, already!": I just want to have a conversation with my kid.

To the parent whose child wanted to talk in the morning, who responded, "Not now, I'm busy,": I just want to have a conversation with my kid.

To the parent who had to deal with the tantrum, and complained to anyone who would listen: I just want to have a conversation with my kid.

If my kid asked me, "Why?" and she just kept asking, I'd answer until I ran out of reasons, then I'd go to Google for more.  If I ran out then, I would just give the honest answer, "I don't know."  If she asked "Why?" again, I'd just continue on with it.  Get silly.  Make her giggle.  If only I could have that conversation with my child.

If my child wanted to have a conversation with me at any time, I'd make time, not just because she's important to me, but because that would be the most important thing in the world at that moment...because I can't have a conversation with my child.

Your kid has tantrums?  Mine does, too, but sometimes she has meltdowns.  Sensory overload.  But that's not the point.  Even during your child's tantrum, you were talking with that child, reasoning with him or her, and I can't, because I can't have a conversation with my child.

She can communicate her needs, and we can make plans in our own simple way.  We sing songs, play silly games, and go places together (usually the store), but I cannot have a two-way, meaningful conversation with my kid.  I can't find out what's on her mind, what she wants to be when she grows up, what she thinks about art, what her thoughts are on abstract subjects.

It's heartbreaking when I think about how I could speak with all three nieces and my nephew at much earlier ages, and I still can't have a conversation with my ten-year-old.

I'm not asking for advice, for sympathy, or anything else.  I am just expressing my frustration and painting a picture for parents out there who don't understand what it's like.