I have wanted blog about this topic for some time, but I am busy. I clean a lot. I'm Vice President of the PTA. I have things pulling me in different directions all the time.
During the school year, Elodie and I stay home during the day. She and I run errands, go to storytime at the library, have playdates and go to music classes. She hasn't napped, regularly, since she was 16 months old. There were 2 days last year that she napped, while my big kids were at school.
Lyla is also a busy social butterfly. She does tap, sewing, Miler's Club, Odyssey of the Mind and piano.
Add Aulton to the mix and I live in my car. He still does OT, PT, speech and hippotherapy every week. And lots of doctor appointments. I have moved some of his specialists to Tucson, which is helping.
PCP - Tucson
Neuro - Phoenix
Sleep Neuro - Phoenix
ENT - Tucson
Endo - Tucson
Opthalmologist - ? (guess I should figure it out)
cardiologist- Phoenix
Immunologist - Phoenix
GI- Phoenix
dentist - Tucson, looking for a new one in Tucson
Pulmonologist - Phoenix
Orthopedic - Tucson
I'm having a difficult time leaving the doctors in Phoenix. Most of them have worked with him since he was a baby. They know me, they know about my family, I know about their families, we can have friendly banter and most of all they KNOW Aulton. I don't even have to use his last name. He's just Aulton. They know he doesn't follow the rules, they know he is complex, they know that there aren't usually easy answers, but they work hard to help me figure it out.
There are some amazing doctors in both places and there are some amazing people here. I'm so incredibly happy with his therapists. We are doing different things in therapy and I think the shift has really helped him. He is making tremendous progress and I owe much of this to my friend, Amy Greiner.
Amy is probably the first person I actually sat down and talked to who has a special needs child in Tucson. I saw her, on Facebook, discussing this communication system, Rapid Prompting Method (RPM), she was using with her son. She was so passionate about it and I started asking her questions, I read a book she recommended. If you ever want a glimpse into the mind of a teen with Autism, I can't say enough good things about "Ido in Autismland". Read it and your mind will be opened, like mine was. After reading the book, I decided to meet Amy and learn more. She agreed. We had a good talk, but I didn't think RPM would work for Aulton.
There are only a handful of instructors that teach this method. Amy arranged for Lanae to come to Tucson and invited Aulton and I to do a few sessions with her. It was amazing! I told her from the start, he is cognitively delayed, he has several diagnoses, etc. She just dived right in and Aulton was answering questions that I didn't have any idea he knew, he was spelling words, using a stencil letterboard. This is absolutely incredible!
I started writing lessons and doing RPM nearly every day. This is how it works. You create a lesson on any topic.... that is age appropriate. I thought I could just write lessons about Dora and Diego. Nope. I started with lessons about things he's really interested in; water, horses, hair. You say a sentence. For example, today I will do a lesson on "Kites". It starts like this, "To fly a kite, you have to have the right kind of kite and the right kind of weather."
Then, you ask questions about the sentence(s) you just read. So for this lesson I would start asking,
1. What are we talking about today?
2. What is a kite?
3. What do you need to fly a kite, besides the right kind of kite?
I give him paper choices and he points to the correct answer. For example, on the first question I would say something like "Plants, P-L-A-N-T-S" or "kites, K-I-T-E-S". I think this may be a reason God made me a good speller. You spell everything. He points to the word(s) he thinks it is.
After that, I move on to more details about the topic, saying more statements and making him spell words. During those questions, I will have him spell KITE and WEATHER.
My lessons are short because we have only been doing this since January. This lesson is 26 questions long. I have been making a log of the lessons and his scores. He normally gets around 86 percent of the questions right. I didn't explain to him what a kite is, in the first sentence, because I have figured out that there are already things he knows, without me explaining. I still ask, to verify.
I'm learning all sorts of things about my 11-year-old. I now know that his favorite color is orange, I know that his favorite zoo animal is a monkey, I know he likes looking at the cactus on the hill behind us, I know he hates Valentine's Day. I love learning these things. I have explained this method to a few people. Many are skeptical, but if you know Aulton, you are a believer. One of my relatives, who is not as familiar with Aulton, said that the things I was learning are trivial. They are not! I think she may forget that she can ask any of her kids what their favorite color is, she can ask what animal they most want to see at the zoo. These are simple questions. Elodie's favorite color is green and she loves koalas. Lyla's favorite color is red and she loves giraffes and she recently discovered hedgehogs and squirrel monkeys.
I cannot stress how much I love knowing these things about Aulton and I learn more all the time. When Aulton did some testing, in Salt Lake, in February, we met with Lanae again. She lives in Draper. She told me I need to start inserting more personal questions into lessons. Aulton is eager to answer them. I ask him questions about himself all the time now. Today, I will ask him if he would like to fly a kite. If he answers "NO", which I am predicting, I will ask him if he wants to go to the park with the girls and watch Lyla fly her kite. He might say "YES".
There are several reasons to do RPM, besides getting to know a person better. One primary purpose is to help your child have open communication. Many children and adults using this method, are spelling complete sentences on letter boards and having a conversation. This translates to being able to put your words onto an Ipad or computer. It also helps with motor skills. It takes a person with Autism a ton of motor planning to do relatively simple tasks. It also requires a lot of thought and sensory involvement . There are many things I do with RPM lessons to help with this, but they are small changes that are hard to explain. Everything has to be done in a very precise, super consistent way for it to be accurate. Lanae is coming again, in July, and I can't wait to learn more and make my process better.
Since starting RPM, Aulton has an increased body awareness. He knows that I know he understands me. This is huge. I have started talking to him like a regular 11-year-old. I was doing that anyway, but I often talked over him. I don't say anything even slightly negative about him, when he is within earshot.
These are some of the changes I'm noticing:
- He tried 5 new foods in one day, without gagging and with hardly any resistance.
- Something that is not supposed to happen during puberty did
- He responds to simple requests. Like stopping for a picture, or turning around to hug someone
- He is doing better in every therapy. Listening to directions and remaining compliant (as usual)
- He's interacting a bit more with his sisters
- I still read Dora, but we have almost finished with "The Diary of a Wimpy Kid"
- He is happier
- He uses more eye contact
- He is more engaged with people he knows
- He is more verbal. Last week, during speech he said (verbalized) "I LOVE YOU" Think about w
- hat that means, every time your child says that to you. I know Aulton loves me, but to hear him say it. Indescribable. He also says "done" very consistently, "hug" and many other words. His language skills are improving. The first week we started, he said three words. This is huge!
- He walks with more purpose. Today, he climbed the stairs on the bus with no help from anyone. Last year, he was using his wheelchair to get onto the bus.
- He has more confidence
- He's made serious progress with toileting
My kids are wonderful, incredible blessings in my life. RPM is a blessing to us. Aulton, Lyla and Elodie are super well-behaved and so much fun. Summers are busy and sometimes difficult, because I get very tired. However, I have looked forward to this summer for a couple of months. I love spending time with my kids. All 3 of them teach me things I never would know, they require me to think outside of the box and with positivity. I have felt a little guilty that things are going so well, when I see friends struggling, but I am working on enjoying the reprieve and treasuring the healthy moments with my children. They don't last and I never know when they will end. Aulton will have another surgery in a few months and he could feel poorly for a bit or he could bounce right back. The most important thing is that I have friends who are happy for us, when things are going well because they travel this road, in Holland, with me. I also have a family that is super supportive of all I do and right now that means that I'm trying to be the very best mom that I can be.
