Lilliths book

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Plugging along

Things have been going slow due to holiday shopping and having a terrible cold, but I'm VERY slowly putting together lesson plans and determining the best learning channels to work with both Aidan and Ava.  Despite these drawbacks I'm still very excited to get started, although I know the earliest we can start will be vacation week....more to come........

Astounding Ava!

Today my youngest, Ava, completely blew our minds by writing her name! She has a dx of autism and is nonverbal, however we have noticed that she's showing an interest in books and seems to have some letter recognition.  Although we were happy about her curiosity and looking forward to teaching her, this was such a surprise!  Recently I had been thinking about teaching her through RPM (Rapid Prompting Method), which I've mentioned in previous posts for teaching Aidan.  I wasn't sure if I would just start with Aidan and get her started at a later date, but I'm going to take that as a sign to begin ASAP!  I'm currently learning the method and will be figuring out where to begin over the next few weeks.  It will take a bit more work to work with both kids, but will be well worth the effort....I plan on documenting our progress in this blog, so stay tuned!

Love is not enough

It's been over four months since I've posted to this blog, and I've barely noticed the time slipping by except for the occasional glance at the date of my last entry and a brief thought along the lines of "holy shite, that was July?!".  Anyway, to say it's been crazy wouldn't really cover it, but it's been crazy!!
We decided to get all of our children re-evaluated to get a better sense of what their needs are, and along the way I'm gaining a lot of perspective.  It's too easy to get caught up in the day to day chaos of getting everyone dressed, fed, and bathed and getting to spend a little time with each.  At the end of each day, no matter how challenging they were, I think about them and how much they mean to me.  And I feel so stuck.  Being so caught up in the chaos has kept me from being the parent that these kids need, and they need SO much.  It's not enough that I love them with every fiber of my being, that I would kill or die for any one of them at any given moment, that I can cry when Aidan is frustrated by being unable to communicate or Lillith can't stop the voices in her head from upsetting her.    The love I feel will not help ease Devlin's anxiety, help Aidan and Ava communicate, or quiet Lillith's voices.  My husband once said, "Our most important job as parents is to teach our children how to live" and nothing is more true. We have to teach them, fight for them, travel to the ends of the earth if necessary, and adapt everything in our daily life to their needs.  As hard as that sounds, I think that will calm the chaos (a bit!) and maybe keep the grownups a tad less insane....
Anyway it's also a goal of mine to post several times per week to record highlights and progress, and also just to keep writing.....I promise they won't all be so long and ranty...........:-)

A Smile from Devlin

About a month ago my son Devlin, who loves horror and is fascinated by special effects makeup, brought me a magazine that he'd been looking through. There was a picture of a child who needed surgery for cleft palate, and he asked me how they did that makeup effect and how the prothetics were applied. I explained that it wasn't makeup and that these children had a birth defect and needed to have surgery to correct this condition. He became very concerned and asked if they were in pain and who was going to help them, and I told him that this was an ad for a charity and that they were trying to raise money to pay for surgery. He dropped the subject and I wondered if it had been too upsetting or overwhelming for him to think about.
Today he came up to me, seemingly out of the blue, and asked if we could send some money to help the kids with their "mouths broken so they can get fixed by a doctor".  Although it had been a month ago, I knew exactly what he was talking about because I remembered our conversation so well, and how deeply affected he'd seemed.  I was impressed and incredibly touched by the fact that he had obviously been thinking about this and realized that there might be something he could do.  I was proud of him for the depth of his feeling and for his ability to feel hope for others. The charity is called SmileTrain.org, and we are going to go online together and make a donation. It's sad to learn that there are others suffering, but I want him to know that there is always hope.

It's coming together...

In my latest entry, I talked about speech generating devices and the teaching method that I learned about in the documentary A Mother's Courage: Talking Back  to Autism, and the more I learn, the more hope I have that Aidan will be able to one day communicate with us.  In the past month, I have made him an appointment at the Augmentative Communication Center at Childrens' Hospital, joined HALO(the school featured in the documentary), and we're planning to take a road trip to Austin, TX next summer to attend a camp at HALO (date to be determined, hopefully we'll be able to get a spot!).   These are two separate methods, but I think that they will complement each other nicely. 
 While the appointment at Childrens' is no hardship, the trip to TX will be quite a challenge for us.  We have discussed at great length the cost and what this means to our current situation, and even though it will be a huge struggle, have decided that we must do this. Only the parents of a child who is nonverbal can understand how compelling this is, to be willing to sell your soul just to know the child who you live with, gave birth to, are with 24/7, yet whom cannot tell you what he did today at school, why he is happy/sad/pensive/angry, etc.  I can tell you about his temperament, and what he does, but not why he does it.  He nearly died of lead poisoning because he couldn't tell us his symptoms...one never forgets being told that their child might not live through the night.  To this day I panic if he gets a stomach virus or acts lethargic or irritable in any way, which is probably really annoying to him!!  There is nothing I wouldn't do for my kids, and sometimes what is necessary is simply bigger than anything done thus far, and there's no choice but to go for it.  There's nothing more important than giving him a voice.
On the lighter side, the other kids are really excited for this trip.  We're going to turn it into a family roadtrip because we want to experience this all together, and I think it will be a nice little adventure for the kids (we also share an extreme phobia of flying!!!).  I'm learning more about this method and plan on purchasing her book so we can get started ASAP at home so he'll be familiar with it when we go.  We're so excited and I think we're finally on the right track, though it'll be a long one! 

There Are No Coincidences

I recently posted about looking into a speech generating device for Aidan, which I am now in the process of setting up.  It may be a few months until we get him an appt., but at least the ball is rolling.  First we have to set up an eval with a SLP (speech language pathologist) to determine his needs and which device will be the best match.  I am told that our insurance typically covers this, and therefore shouldn't be an issue. We are so excited to try this!!!
As fate would have it, as I was channel surfing the other night I happened to see a documentary on HBO called  A Mother's Courage: Talking Back To Autism, which is SO amazing, about a mum in Iceland  who has a severely autistic son.  The services in their country are very limited, so she traveled here to America to look into treatments for her son.  She talks to Dr Temple Grandin, who gets a lot of screen time and, as always, gives incredible insight into autism.  She also visits a school in Sacramento that specializes in  ABA, and looks like a great program (ABA is quite effective, Aidan gets 2 hours/day at school). Most notable, however, was a program called HALO (Helping Autism through Learning &  Outreach) located in Austin, TX.  It is a program created by the mother of an autistic son who teaches autistic kids to communicate using what is called RPM, or Rapid Prompting Method.  She designed it for her son, who is completely nonverbal and was also diagnosed with mental retardation.  He is still nonverbal, but writes beautiful poetry and has been published.  Oh, and his IQ is 185!!!  When you have a nonverbal child it is so frustrating to know how intelligent s/he is but there is no way to formally test them, and most also carry a dx of mental retardation as well.  To be able to get inside their minds and have proof of what you know is there would be such a gift, and a lot of parents find out things they never knew about their children whom they live with and see every day.  The boy in the documentary told the instructor and his mum that he wanted to take piano lessons, that he'd been making music in his head since he was little.  Watching this documentary, I couldn't stop crying because it was the first time I felt such hope that I could truly get to know Aidan, and maybe others will too.  I know he is so much more than his autism lets us see, and it's my dream to pursue this for him.  I feel as though maybe there is a light at the end of the tunnel, I just have to clear a path...

A voice for Aidan?

I have read about autistic people who are able to use communication devices to help them speak, and dreamed that one day Aidan would be able to speak or to use something like that. However, the only ones I knew about required typing, and he's unable to use letters. Recently I found out about Dynavoxtech, a company that makes these devices using Mayer Johnson images, and I'm really excited (he is already familiar with Mayer Johnson images because they use that system at school). Another thing that I didn't know is that sometimes insurance covers it, and the company will help submit the paperwork. I hope that this will be the case, because communication has been such a struggle for him.
I'm trying not to get my hopes up too high, but if we are able to get him to use this I think it will make all the difference in his life. There are so many times when he couldn't communicate that were so emotionally difficult for him, and as a parent it is such a helpless feeling. He has so much personality, and I so often wonder what he's thinking about. He's showing more and more interest in communication and is so wanting to be a part of things that I will never give up hope that one day he'll have a voice.

Autism Every Day vs.Autism x 6

I saw both of these documentaries about autism several months ago, but Autism Every Day was mentioned recently and I got annoyed and disgusted all over again. I think it's great to shine a light on the struggles and challenges that a family faced with autism must deal with, but Autism Every Day was just plain weepy and whiny. It almost seems as though it was Michael Moored, cutting out anything that anyone could have said that held even a glint of hope or optimism and editing in only the saddest, bleakest of glimpses into these peoples' lives. If these people are all only about misery and suffering through every day then I feel so sorry for their kids. One guy was talking about how he was concerned about his son's safety because they lived near a pond or lake, which is a very valid concern, but then broke down into tears and said maybe his son would be better off if he did just walk into the water. WTF??? Okay, I know that sometimes we all give in to self pity, but come on! I will be the first to say that parenting four autistic kids is very difficult and challenging at times, but as a parent one has to brace up and do everything they can to make sure that these kids can have the best possible outcomes.
That being said, I highly recommend Autism x 6, a documentary about a family with 6 autistic kids. Sure, it shows the struggles they go through, of course it's no picnic, but they're very strong, loving parents who are doing their best to raise their family. A very important thing, and I think these people seem to have a grasp of this, is that you have to roll with the punches and accept that you have been given an unusual and unconventional life. I had to smile when the mom wondered what her neighbors were thinking when they saw one of the kids standing on the kitchen table, because so many things were oh so familiar. This family has the right idea, as far as I'm concerned, when it comes to doing what one can to ensure good outcomes for the kids and just going with the flow when that's all one can do. It is definitely a balancing act!

An introduction...

I have been thinking a lot today about my four wildly different autistic children and how unique and interesting they are. So it only makes sense to introduce them all...I'll start with my eldest: Lillith is 13 and diagnosed with Aspberger's and bipolar disorder. She is incredibly creative and complex, and although she's lots of fun (and very funny), she can be very argumentative (indescribably so). She was diagnosed with Aspberger's at age 5, but the bipolar diagnosis was only a few years ago. This explained a lot of behaviors that didn't seem to fit the Aspberger's dx. She loves to write and draw and makes great illustrated stories.
Devlin is 11 and has a PDD-NOS dx. He is also very creative and loves drawing. He is a horror fan (a chip off the old block, he is) and wants to go to school for special effects makeup when he grows up. He is fascinated with Makeup Artist magazine and wants to know how everything is done as far as makeup, prothestetics, etc and actually has made masks that are pretty amazing using paper, paper towels, elmers glue and markers.
Aidan is 6 and has an ASD dx. He is completely nonverbal and VERY active. He can very often be seen on the highest surface in the room and can scale anything like Spiderman. He is very mischievous and thinks it's the funniest thing when knocking things over, or dropping CDs and DVDs behind the heaviest piece of furniture he can find (and he makes sure we see it, because that's even funnier). All that being said, he's got a very sweet disposition and is quite affectionate.
Ava is 3 and has a PDD-NOS dx. She is also nonverbal but I think she will talk at some point. We call her a little diva because she is constantly posing in front of the mirror. She is also quite active and likes to copy her older brother (yikes!!) but hopefully she won't try to match him! Even though she is nonverbal, she is very much interested in interacting with others and is very sociable and very often initiates play, which is encouraging.
And that is just a few sentences to describe my darlings who I love with every fiber of my being and who make me tear my hear out:)!! I'm thankful for my husband every day, because he's the only other person who REALLY understands, and who has the same sense of humor. I think we keep each other relatively sane......

I'm completely new to this...

Let me just take a minute to say I'm completely new to this blogging thing, so please bear with me while I get the hang of it :)

"Wow, you sure have your hands full"

A statement I hear a lot, as one would imagine. I suppose any family with four kids does, and mine is probably much crazier than most. But I have to say that I don't know any different and I'm not saying that in a "pity me" sort of way. When one decides to have children, they have no idea what they're signing on for and whoever shows up, shows up. I think the first thing any parent has to learn is to kick their expectations to the curb and just love them for who they are. They are not perfect and neither are we.