MamaOfAutism's Autisable

In another world. Really? Not by this pic.

Tue, 06 Apr 2010 14:49:27 GMT

I just wanted to post a pic of my daughter at 13 as I was getting her ready for the day on Easter Sunday.

She actually posed for this.

She has been cutting up lately, with personality showing more and more. She's taken an interest in cars and trucks (walking up to people's vehicles trying to get in, guard your keys) and shows like "Cold Case" and CSI", plus PBS channel.

In the past she wouldn't change the channel if you left her in a room alone. Now she is picking up the remote to surf and find her own programming.

I think we've made some very good progress this year as our first in homeschool. It has been a wild ride and we are winding down for the regular session. Of course there will be a summer session.

One of my favorite sites for materials for her is: http://www.filefolderfun.com/ Print and have fun!

Until I pop in again, check out these articles I wrote: http://www.brighthub.com/members/dhughey.aspx

With Garlic Comes new Behaviors!

Fri, 08 Jan 2010 19:34:10 GMT

In my last post, "the haircutting post", I spoke about a new regimen of garlic and aloe to address candida. She no longer takes the aloe but has kept on with the garlic. I've also added some oil oregano capsules and grapefruit seed extract. I've read several spectrum forums posts and articles and decided on these supplements but we will be phasing them out soon, as you can't take them forever.

I would say the results were good!!

She couldn't take the GSE long because it is so strong. I think she used it for about a week a month ago. The oil of oregano she has been taking for about a month with 1 a day and she's been taking the garlic, 3 capsules, since October 2009. So that's been about 4 months, so yea, it's time for a phase out.

Now I say the results were good because since then we have communicated by email, that's with me emailing her and having her reading it out loud, and me discussing what was written with her.

We have also been communicating with pictures. For instance, a couple of weeks ago she took it upon herself and poured bleach on an outfit I had worn to take her shopping the day before and 3 of her brother's outfits. My clothes were all black and most of his too so they were ruined, yea.

Picture it, clothes on the floor ready to be loaded into the wash. Her left in the room with the clothes in the laundry area. Her folding clothes fresh out of the dryer. Her taking bleach and pouring it, liberally, on our clothes, and then stuffing said clothes and the load ready for the wash into the dryer for hiding.

I was totally upset and distraught after this and thought back to what transpired before this to which I surmised she was upset because she was left to finish folding the laundry from the dryer (like an outfit was left to be folded) while her brother stopped short to get online. I guess she was mad at us.

This story may seem far fetched and a few people seemed as though they didn't believe me when I told them about it, but I promise to you, it's true, and I believe I am spot on with her reason for doing it.

After I collected myself, I sat her down to ask her why she would do such a thing. I used pictures (smiley face and frowny or crying face, and sometimes a deadpan face). She pointed to the picture to answer yes (happy face) or no (sad) or to tell me her basic feelings.

Now let me say, my kid has never done anything like this or been able to tell me why or communicate anything about her feelings to me in the past. I credit this change in communicative ability to the supplements. You may be saying, "Well maybe it's because you used pictures this time". I have use pictures before of some sort with no results.

Early on with this supplemental diet, I have noticed her paying attention to what I say more. She looks at my mouth more instead of just looking in my direction or at me. Now she seems interested and intent on doing the right thing or replying with an answer.

Again, this may be due to her school environment this school year and yea I think so, and I also think it's more than that.

It just feels different this time.

She also makes an effort now not to hide paper to chew on later or to have any in her mouth when she should be talking. She is now aware that paper chewing is bad and makes an effort to correct herself but she's still working on preventing putting it in her mouth at all.

And the Downfall

With all of this goodness though comes some badness. She's been shoplifting. Taking like single string cheese packages when food shopping and toys when toy shopping.

I needed to pay attention more. Hard though when I'm running around trying to deal with the public and their ridiculousness and manage her too. Plus she's sneaky!! I many times forget how much like her mother she is lol.

Overall I would say Jessica is still autistic. Still severe. Still her same self, but more of herself.

She isn't cured. She has changed. She's conscious of herself, the world around her.

She now participates in the world outside of herself. She now engages me more. She acts more like a girl nearly 13 years old.

But she's still affected by autism but different in a different kind of way.

My Daughter gave Herself a Haircut

Sun, 18 Oct 2009 03:04:46 GMT

...a big one too. After her chopping and my trimming and shaping, about 10 inches were taken off. All of the scissors around the house have been hidden after this. She smiled and looked at herself in the mirror with pride after her cut. With the cut she wont have to wear rollers to bed as it is too short to roll unless I straightened it, which I won't. I wonder if this was her motivation or she was tired of me not styling her hair when she thought it was a good time to do so or is it something else? Questions, questions.

Good news though, she has mastered one of her occupational skills!! Some of her other skills I am not sure how to handle. She is able to get on the computer and stay on and complete work which is great progress for her as over the years she would be itching to get off it. She likes to play concentration types games online but it's a no go with the board game version. She participates in class and answers questions aloud.

With the progress has come some challenges. She has started self harming by bumping her head on things or making herself fall over. She isn't hurt from the falls and if you weren't paying attention you would think hat she had actually lost her balance. I do not like the head bumping thing at all and she will also hit her head with her fists. My son is often scared when she does this. Interventions anyone?

We have also started a regimen of garlic supplments 3x a day with meals and aloe vera juice with meals in the past 2 weeks to address any digestive problems stemming from yeast overgrowth. We visited our family doctor's clinic over a month ago and he shucked off my questions regarding a possible yeast issue so I decided not to argue the point and went with some homeopathic solutions. I wanted to try the nystatin but to no avail. I do feel that there have been some changes, small, but something feels different this time.

I also started taking the same things as I have some of the same problems (minor) and some of my problems aren't like hers. I say that we have some of the same problems but I am not considered one with autism but as I am her mother, its not far-fetched for us to have some of the same things going on without a matching label.

Other than what I have discussed, we are moving along. Hopefully in a few months I will have some great news and details to share about the effects of the aloe and garlic.

Toodles!!

Empty Promises, LEA's, and the Perfect Learning Environment

Wed, 05 Aug 2009 16:48:02 GMT

School will reopen here in less than 2 weeks. All summer I have looked for a job in this area to no avail. I don't know if it's the fact that I have a master's, my GPA is a 4.0, my certification is out-of-state, or that those viewing my resume feel I am overqualified which could potentially fuel me to ask for a higher pay, but I am over trying to break my neck to prove something to these douches. If you want to hire me fine, I can outperform with the best of them, and if you don't hire me, someone will.

Now with all of this I called a parent and alum who happens to teach in my daughter's self contained environment yesterday just to catch up. Of course there were some changes she had to inform me on. The great LEA we have had for 2 years up and found a job closer to home. This is fine but a few weeks prior to this leave she made promises to those who work in my daughter's class and to me on how she wanted the direction of the curriculum to go. Great!! I was satisfied and very pleased that she was even trying. My experiences with LEA's are that most just simply do their job and hope that your child can benefit from the curriculum, environment, and everything that goes along with that but they usually don't go out of their way.

Taking this information in I felt robbed. It's like I can never really trust the school officials to do as they say when it comes to providing the education that my child and all others with in that self contained environment need. Yes doing their job is what they should do but to me that's basics. Many who are in self contained classrooms will be there the duration of their school career so to me it makes more sense to set up a complex, streamlined curriculum that will address the general, pervasive needs of all to be educated in such an environment and then go in and create individual curricula for each student addressing their futures and current state.

So what do I do now? Move, keep doing what I do (I don't really depend on school to teach my child much), or just keep an open mind for the new LEA (who used to work in this district before which I can't understand why you would leave and then come back. Comfort?) I'm going to try to keep an open mind but I have written this district off as total BS after this news. Every year there is someone new. It's like it's viewed as a district where you can get a job to tide you over to the next best thing. And if you actually try to do something for the long term, you may get hit with roadblocks from superintendents and such who feel it's a waste to put money, the proper amount of supports for teachers, and thought into the area.

How can you ever really educated these kids and accommodate their needs when there is always an employment revolving door where special education is concerned?

Chasing a Fantasy

Sun, 26 Jul 2009 15:23:03 GMT

Being a single parent I guess I just cope in my own way with taking care of both of my children's regular needs and their special needs. Over 10 years there have been tons of suggestions made to me, links to news clips on autism, and phone calls telling me to watch a news program on autism. Some I pay attention to and some I don't. It's not that I don't care about my daughter's well being but I just don't have time or have it in me any more to get hyped about something that probably won't work.

I don't know the average person's family history but there are things about my genetic line and also things about her father's genetic line that could be why she is on the spectrum and there is also the issue of a traumatizing birth. Or maybe she it's just that this is how things were meant to be.

I don't have the money to try a lot of things pushed onto parents of those on the spectrum to buy and try and her father is useless.

I mean seriously, I don't have time to waste with pipe dreaming or crying all day everyday or running from place trying to make appts some "professionals" want you to attend. I am too busy trying to make sure that all involved directly in my daughter's life stay on track with my life goals for her. There are so many things to look forward to and push your child towards as they age, that to me trying everything touted on some show is wasting time.(and you must know that people do lie and it's not impossible that the tv people will lie for their own agendas such as money or have guests on to inflate their story or that people will lie about what worked for them, as more people are diagnosed with autism, it's becoming big business).

Over the years I have seen my child be able to do so much more and blend in so much better than her peers on the spectrum and others with differences. And no my goal isn't to make her fit in. It's to make her life as good as it can be while still attending to her issues but not letting those differences be the center of our lives, her life!!

Autism is just a condition that affects a person, it is not life. It is not life threatening. It's not that bad. Just live your life and let your child's be as good as it can, just like you would if they were never diagnosed.

PECS and other Protocols

Tue, 21 Jul 2009 18:03:01 GMT

I have known about PECS (Picture Exchange Communication System) for years now and have used it on a couple of occasions. This summer I finally had some good results. The sytem is supposed to fill the gap in communication or offer a bridge of communication for those with autism or on the spectrum, to help them communicate with those we are outside of the spectrum. Great right?!!?

Sometimes, maybe?? Well the thing about PECS is that it can be disruptive to daily living, overwhelming for those administering the system, and not always productive and useful for the one using it. Here's my latest experience using the system:

I didn't want to wait to be allowed access to the school's computer to collect the pictures I would need from the PECS software so I got on my computer, opened MS Word, and searched for clip art. I printed card stock sheets with 3 rows and, I think, 6 columns of pictures of common daily events and things she likes or encounters. I cut the pictures out. Put velcro on the backs of each card and stuck them on a corkboard I picked up at my pimp's house, Wal-Mart.

We were on it hard for about a month then it faded. I guess we got distracted from using it and I feel that we should start back to curtail some of the crying she does throughout the day now that the Risperdal is completely out of her system.

I also was told that the system could encourage her to be more conversational. I saw that it did but that fades when the system isn't in use.

In the past, the only thing she did with the pictures was chew on them and they were laminated and were the actual pics from the software.

I read not long ago somewhere on the web a mother stating how the system had been suggested to her and she found it to be very overwhelming to keep up with while using other protocols with her child. I agree with that because it's not really normal to have to go to a board or pull out a picture book containing each event before you can do it. Or have a pile ready for the child to choose from to even complete a sentence for writing and reading exercises.

If a parent finds that they are having a time trying to keep up with everything suggested to them that maybe will help their child's life, I think they should disregard it if it isn't adding anything profound, through observation, to that child's life. How can a child with autism really blend in with their peers and society as a whole if they are running around with picture books to help them be able to get from one point to the next?

PECS may not be as bad as a child running down the aisles of the supermarket ripping things off the shelves but having to keep up with a picture book while you chase the child down, while not tripping over yourself in the process, is not something I can be bothered with. My child hasn't ran through a store (not ripping things off the shelves mind you) in a while....

Wait!! let me stop thinking about it before she does it the next time we are out.

But I think you get my point, the system is hit or miss for some. It may not work now but will work later on when the child has gained more skills as a whole, and vice versa. Also the good from using the system may be short lived or lackluster for some. I also feel that if you can't afford the system or can't find it on a public or school computer, use your own pix.

And finally I believe you should go into using the system with low or no expectations because there is no guarantee that you will get the results you read or heard about which were probably no less than fantastic.

3 Months and Counting: Still no Results

Tue, 21 Jul 2009 16:39:59 GMT

More than 3 months ago I took my kids into the Arkansas Children's Hospital's James L. Dennis Developmental Center for my son's diagnosis of SLI to be updated and to determine if there was a change in diagnosis and to gather some recommendations on interventions and modifications for Jessica. In 07 my son was determined to have a speech-language impairment where he has trouble processing language and used to have some slurring and unintelligible speech. I always thought the kid was dyslexic. Now with stating that, you must know there's more to dyslexia than reversing letters and reading words from right to left instead of left to right (not the technical name or description for these characteristics) and he did very little of the aforementioned. Of course my thoughts were shunned during that 07 evaluation but they agreed that there was some problem with speech and that I wasn't just being an overbearing mom, and as you would think, they did question if he was on the autistic disorder spectrum. I knew for sure he didn't have autism but something was up.

Anyways, over 2 years later the diagnosis is totally different and way out in left field in my opinion. He was diagnosised with mild MR instead of dyslexia or SLI. WTH!! I just couldn't get why they were saying this and come to find out the person who evaluated him and was giving me this diagnosis has a clinic on the hospital campus for those with MR. Hmmmm. Looking for new clients? Also I know a bit about MR now since getting my master's in SPED. There are prominent determining factors for MR.

So being that both my children were now labled as having developmental disorders, they suggest genetic testing with the results to be sent to both me and to the genetics clinic at the hospital. The sorry-ness of that clinic is the pits and I don't even want to get into how disorganized and full of it they are. Knowing what I know about genetics testing I knew it would be some weeks to get results.

6 weeks passed with nothing in the mail so I wait a couple more. Still nothing. I finally call sometime in June and they swear they sent the results!! Where are they then? They had the correct address on file but I had nothing in my mailbox from them. Something wasn't right.

I yell at a few people and question their intelligence, openly, and they swear they are going to send them again. Still nothing. Here it is with July almost over and the last time I called, less than 2 weeks ago, a nurse was going to call me back. Ha!!

I will be on campus next week and I hope I will have time to go over there and get the lies face to face.

My guess on what happened with those results...

The results didn't jive with the MR diagnosis for my son. As soon as I came home from that appointment I looked up the syndrome they were genetically testing for which is Fragile X. Based on that info, my son doesn't fit the bill.

I'll be sure to update with the crap I find out, if I ever find out anything.

Oh and my son was evaluated again after this MR diagnosis for SPED services at schoool and it was said that some can classify his characteristics as MR but it can also be seen as SLI and some other disorder I forget the name of. We went with SLI because he doesn't have enough MR characteristics to be classified as that, such as the cognitive part of MR. I don't think I'm in denial either. I know this kid pretty well and he's not cognitively impaired at all but I do believe professionals will lie for their own agendas.

This is remotely autism related but it's just a day in the life of b.s. when trying to get help for your kids in Arkansas.

Today was not so Good for Autism...

Fri, 17 Jul 2009 03:45:36 GMT

in my household that is.

It all started with a leftover banana nut muffin from breakfast. Being on a diet for the past couple of months, I thought my daughter had gotten used to having less for each meal and those close to her also cut back so she wouldn't have to go it alone. Well today none of that even mattered and it was like the diet never existed.

She cried, screamed, ran, and literally kicked. I thought it would last only a few minutes and had forgotten what one of these episodes can be like since I hadn't seen one in several months. I talked to her about why she couldn't have more and even tried to modify behavior. Nothing, it got worse. I finally started bending and telling her she can have it if she gets quiet. She did and I let her have it. It should have ended there but of course it didn't.

About an hour later when she knew I was truly fed up with the foolishness she began to call out the name of her caregivers; I took this as she wanted to be free of me and I had pissed her off to a high level of piss-osity. Boo for her because all were unavailable. We went to run errands and she kept rising up with the foolishness ever so often when were out. We got home and I was at a boiling point, my threats and rational talking had not done a thing!!

We ended up in the hallway toe to toe (she's about 6 feet tall and 5'4) when I informed her that if she couldn't contain her emotions and let this go that she would have to leave out of the living room where her brother and I were. She didn't like that and kept pushing me to get past. I didn't budge. I did eventually get back to the living room to finish cutting out pattern pieces. She came in ready to apologize requesting a hug. It was adorable but she kept a subtle whine of crankiness for another couple of hours until 1 of her caregivers became available to come pick her up.

Before I could hang up with the caregiver, Jessica was standing next to the front door ready to go!! It was funny. I laughed pretty hard and popped some tylenol. The caregiver arrived about 10 minutes later and she left out the door still making a little bit of a fuss.

A relief for her and me because I think this was more of an act of defiance considering she is a tween and wanting to press her issues and wants and me having to be the parent. I think autism had a tiny bit to do with this, mostly the incessant whining.

She came home a few hours later relaxed and pleasant. It's funny when it's over but very tiring when it's happening.

I do love her very much.

Friday, July 10, 2009

Fri, 10 Jul 2009 18:39:14 GMT

I'm the mom of a tween with autism. I'm also a new special education teacher and I have another child with a speech impairment.

Living in a rural town the southern, midwest, as you would imagine is pretty bland and limited when it comes to resource and knowledgeable professionals when it comes to autism and differences period. I've been treated like a dunce, questioned on my attitude about autism, and admired by some. If every a trial or tribulation you could think of that comes along with living in a non autistic world, my daughter and I have experienced, or probably will.