Horsies

So, a friend of ours asked if he could bring his horse by so our kids could get all teary-eyed when it was time for the horse to leave. :) All the kids had a great time and Rachel and Sarah adored riding.

We're definitely doing the equine therapy now.

Michael Savage and Autism

Too much has been said about this. I mean, come on, this is Michael Savage Savage Nation Have You Read My Book You Red Diapah Dopah Baby You Don'wanna Talk About It You Don't Want Me to Talk About It Okay I'll Talk About It (thanks to my husband who came up with this fantastic string of words based on the few times he listened to Savage's show back in the early aughties... it's really neat how the whole thing morphed and grew and is definitely a story for another time).

I've gotta admit he's a trip to hear. He's the ultimate polemicist, better by far than anyone on the Left or the Right mostly because he doesn't subscribe to either. He's about as offensive as Howard Stern and, in my opinion, makes better points on many issues. So, his recent comments about autism are great publicity. I can't stand them, but they're great publicity... and I'm not going to put them on my blog because I just can't stand seeing the "it's the parents' fault" nonsense more than once or twice.

Do I believe his explanation? Well, it fits with other stuff I've heard him say, but if that were the case, he should have been ranting against the pharmaceuticals, not the parents.

But then, this is Michael Savage we're talking about... and, of course, ratings.

sounds and pics

Right now in speech therapy we're working on getting Rachel to follow a daily routine, i.e. chores and basic self-care. I'm seriously considering writing out routines for a couple of processes Rachel struggles with since the morning routine seems to be working out pretty well so far. However, one of the side-effects of this is that Sarah, who already pretty much follows a routine, got even more into the morning routine than she had been before. So, now I get to deal with her desperate need for structure when she can't find the hairbrush in the morning. Thank goodness she's at the point where I can offer her an alternate brush (and thank goodness we aren't in an environment/situation where sharing brushes would bring on lice... I still don't like it though).

And yes, I admit it's very nice that Sarah has been wanting to get her chores done. :)

We started Rachel on sounds today with the sound "m". She does well overall until she has to hold the sound for any length of time. Then, she tends to substitute by placing her lower lip on her upper teeth. Not sure if it's because of weakness in her lips or the vibration getting to her or both. I'll be consulting my sensory integration stuff this week for ideas.

Sarah's big thing this week is "what if" questions. I'm really glad she's at this point because once she gets to the point where she can consistently predict (or at least make an educated guess) about consequences so much more will open up in the way of possibilities in her education and in life.

I've decided to look over the developmental model for Son-Rise and see if I can't incorporate that with Floortime since the two are so similar. I mention Floortime because one of the women in a group I used to belong to mentioned that Floortime has a more integrated approach to its therapy (i.e. you use the approach in the real world as well as the playroom). So, between herbal formulas/supplements for the family and research for Rachel and Sarah, it looks like I'm going shopping.

Oh, and I hope to review that music therapy program I ordered later on in the week.

And finally, I have the name of a doctor who will respect a parent's wishes regarding vaccinations. A real-live medical doctor. I'm still in a mild state of shock. We might be able to do the equine therapy after all. If time permits. :P

Here are the pics I promised of Rachel's drawing progress.

Okay, so here's a drawing from when Rachel started school in 2007. It was her third year doing a preschool/kindergarten program and she showed very little interest in anything academic. I was just glad she was starting to draw people instead of things or abstract shapes.

This second drawing is from when Rachel started the second half of the school year. As you can see, a sense of proportion is starting to creep in. Because she used pencil for this, you can't tell, but around this time she also started experimenting with multiple colors (never more than four) in her drawings instead of the monochrome I was used to seeing from her.

And this is one she did recently. I'm so amazed and proud of my girl. :) She's come a long way. Both of them have.

Federal Chelation Study?

We looked into chelation years ago. My husband and I both didn't feel right about it for several reasons, some of them specific to us, and some of them concerns about the treatment in general. Instead, we decided to pursue an herbally based program with a heavy focus on nutrition and proper preparation of foods (soaked grains, etc.) combined with interaction/play-based therapy.

That said, I've never felt parents who opt for chelation are making a bad choice. It's not one I would make, but that has no bearing on another parent's choice. Different kids and all that.

So, why do I feel squeamish about a possible federally funded study of chelation as it relates to autism treatment? Oh there are so many, many reasons.

Here are a few of my concerns.

1. From my perspective, everything the federal government touches suffers. There are some things you want the feds involved in, but let's face it, the fewer entities the government takes over, the better the country runs. Getting the feds involved should always be a last ditch, no-better-way-out solution. I would much rather see universities research chelation, especially those with top-notch medical schools. Unlike tearing apart the synergistic nature of herbs, studying the effects of chelation should be perfect for researchers: a simple, straightforward process that already has D.O.'s who keep good records as a matter of course.
2. Is the federal government as objective as some would like to think? A federal study is huge in its effect. Corporate influence is there at the university level as well but no university has the impact of a federal study (from what I remember anyway... it's been a long time since I had any respect for any study). What kind of corporate/PAC/lobby influence will we see in the chelation study?
3. This is more about autism in general. I've seen too many studies fall into too many traps for many reasons that are endemic to researchers of many different fields. These include both studies that told me what I wanted to hear and those that didn't. The idea that mercury causes autism, though worthy of study, might also easily obscure other related theories that are just as valid: three off the top of my head include the idea that it's all the preservatives combined, there's a genetic predisposition toward side-effects/autism spectrum, and the vaccines weaken the immune system from the start.
4. But I think this final one is the one that worries me the most: what if they find that chelation works? Now, if the studies are accurate, this would be all well and good... in fact it would be wonderful for parents. Just like vaccines were considered wonderful... for most kids. The problem was not that vaccines were good or bad. The problem is that the government decided everyone had to have them. My concern is that this study might be used to encourage parents to get a therapy that isn't right for them, that (just like public schooling and vaccines) parents who decide not to get the therapy will run the risk of harrassment at best. I don't even want to think about the worst.

I know, I know, I'm being paranoid about all this. Maybe. I've seen too much garbage, heard too many horror stories, and don't even get me started on what Texas did to the FLDS kids. Then again, I'm a mom and moms worry.

A few things I forgot to mention

Horse therapy won't happen. First, it's the summer and way too hot. Second, the waiting list is incredibly long (I know, I know, that's weak). Third, we need a reference from a medical doctor and we've been having a hard time finding a medical doctor since most are gung-ho about vaccinations (can you tell we aren't?). A lot of the parents I know (mostly online) either go with DAN! doctors (we don't want to do that protocol) or D.O.'s. I don't mind a D.O. but I really don't want to do chelation and I'm worried a D.O. would press for that. Plus, I'm not sure a D.O. would count (I might call back and ask). I have a possible lead on what sounds like a medical doctor that I haven't followed up on yet (bad cavamil) so maybe that last problem will change. And finally, fourth, and this is a big one, we don't have the ability to get the girls down there for therapy at the times we would need to apply for in order to speed up the process. I'm not even sure we could get the girls down there at all since we currently have outgrown our van. So, for right now, no horse therapy.

Too bad (and I don't mean that in a flippant way), but there are always other options. Anyway, here's an article about the place: Pony Sparks Fighting Spirit of Girl With No Arms. Maybe someday.

On a lighter note, Rachel has really taken off in her drawing. I mean, really taken off. She's dramatically improved in just a few months. No time today, but by Friday I hope to have a couple of pictures scanned in and either posted here or on my Flickr account. Until then, pray I don't get sidetracked or overwhelmed. :)

Busy, busy, busy bee.

Well, I guess when I want to get things done, I should say I'm resting. :)

Warning: This is going to be a long post.

I've thought long and hard about the Son-Rise program. I love it. The principles are wonderful and the playroom is a great idea that has worked very well for us when we've been able to use it. I love their loving, accepting approach to autism and the way they focus on interaction skills in the therapy. I especially love the fact that they put the parent at the head of the program. My own experiences have proven to me that no one can get through to my kids more than those close to them, which means family then friends. Therapists offer great guidance at times but the day-to-day stuff still falls on my shoulders. And the Son-Rise program is, in my opinion, the best at helping my children overcome their delays.

That said, I have decided to no longer pursue setting up a full-time Son-Rise program. As wonderful as it is, we just don't have what we need to incorporate it like I want. We live in an area that has very few potential babysitters and those who would be great just don't have the time. So, there goes my time in the playroom. As for volunteers, I don't want the legal and financial hassle of creating a foundation or becoming part of an organization just so that I can ask college kids to come to my home to help my children grow.

And this bring me to my main reason for not doing this program. It's not really the room. Well, okay, it kind of is. We rent, and that means there are things we can and things we can't do to the room. I realized that I want the option of putting in a door with a window so I can see how things are going or setting up an intercom so that I can hear how things are going without distracting Rachel from the therapy. But it's more than this. I also want to be able to rip out the carpet and put in vinyl sheeting or laminate or something that can be easily cleaned. I want a house that looks nicer than the one we currently rent so that I won't feel we're running an amateur operation, because frankly that's the last impression I want to give. I want homey and warm, not sterile or run-down. Unfortunately, this is going to take a lot more work than just fixing up Rachel and Sarah's room. It's going to require a move and possibly buying a house. Since both are impossible at the moment, I'm putting it all on hold. The most I may try is a once a week playtime with Rachel since she has quite a few more social difficulties than Sarah.

Obviously, I'm still going to apply the basic principles.

So, the next question is, what will I do instead? Well, a long time ago, before we realized that Rachel's problems were bigger than speech, we bought a speech therapy program advocated by NATTHAN called Straight Talk by Marisa Lapish and Tom and Sherry Bushnell. We have both volumes. It has references to Christian scripture in it and advocates starting a therapy session with prayer, so if you're offended by that, just ignore it. Personally, I liked the spirituality they brought to the topic. Its core though is speech therapy and having been through private speech therapy and public (ECI) speech therapy I can say that this program does a pretty good job. Volume Two, Part One focuses on listening and creating an environment where language becomes vital. It also works on vocabulary on a "level" basis. Part Two includes developmental checklists so you'll know where your child is at age-wise in his/her speech, instructions and a form for a very nice comprehension test based on the previously mentioned checklists as well as instructions and forms for taking a language sample. Once all that is done instructions and a form are provided for daily speech therapy sessions.

Volume Two is very thorough when it comes to principles and forms. It's only weakness is a lack of suggested activities to help develop the areas mentioned in the checklists. We overcame that by looking for books like The New Language of Toys by Sue Schwartz and Joan E. Heller. Also, although they recommend making therapy part of the everyday schedule, the form and some of the instructions assume that you'll be pretty formal in most of your sessions, which may or may not be the case.

Anyway, I'm definitely going to try it again since it takes very little time out of the day to do if you decide to make it a "session" (about 15-30 min.) and even less if you incorporate the learning in an already planned activity. So, this past weekend I did all the evaluations and the sample. It was nice finally getting some stuff on paper again.

We will also be using Volume One of Straight Talk. Rachel has always had trouble with pronunciation but I didn't realize how bad it still was until I did a language sample over the weekend. It's bad enough I had to do the general overview test of speech sounds to find out which sounds she keeps missing/mispronouncing. It's a pretty long list. Next (i.e. tomorrow) comes the deeper tests on the individual sounds. Once again, from what I can see there's very little in the way of suggested activities; however, I'm sure we'll be able to find ways to teach the sounds just like we've found ways to teach more general topics.

(Note: for those who wonder how on earth a parent could not realize how badly their child mispronounces words 1) a parent expects some mistakes and 2) a parent learns to decipher a child's meaning from all sorts of gobblydegook. Just look at the parents of really young toddlers and watch them as they have what seems to be a pretty advanced conversation with a toddler who seems to be speaking gibberish. After a while of watching you'll realize the parent is just a very good translator.)

All this talk about struggles with pronunciation leads me to my final topic: a quick review of Building Bridges Through Sensory Integration by Ellen Yack, Paula Aquilla and Shirley Sutton.

Building Bridges is meant for parents, educators... heck, anyone else willing to spend the time reading it. The focus is autism and PDD or any child who has trouble processing sensory data. Part One gives a nice overview of terms and their definitions (so everyone's on the same page) as well as the theory of sensory integration and the role of the occupational therapist in your therapy plan. It's here that they also mention the Wilbarger Protocol which I found very intriguing even though they make it clear there's no scientific studies that say it's useful.

But it's Part Two that most parents will flip to immediately. That's where they talk about identifying sensory integration problems and also suggest strategies for dealing with various issues. They also have a really neat list of items you can make to help calm your child, like weighted vests (you'll have to find your own vest pattern... all they do is tell you how to modify it) and the weighted snake. This book is especially helpful for those whose children are very young up to early elementary school, possibly a few years beyond depending on the strategy.

All in all, I like this book a lot. It's given me some new insights and strategies as well as helped me figure out what to look for if I decide to get either of the girls into occupational therapy. I highly recommend it.

Finally, I'd like to give a quick nod to the publisher of this book (I have no affiliation whatsoever with them though I did live down the street from them at one point). Check it out: Future Horizons, Inc.

Update: Interaction, interaction, interaction.