Spontaneous Language!!!

This was very exciting for me, so I wanted to make sure to document it. Jaedon was crying and fussing quite a bit, and I was working on being the happy detective, offering him options, yet letting him know that I wasn't sure what he wanted. Finally, after he had calmed down somewhat (he was now wearing his Miracle Belt, a weighted belt), I told him that next time he was feeling like that, he could say "I want..." but before I could say "belt", he filled in "butter!". I was surprised, but I celebrated him wildly, and off we went to get the sunflower seed butter in the kitchen.

Sometime later, we were in the kitchen, and I think I was getting him (more) butter and I said, "you know, you could tell me 3 words" and looked at him expectantly. He smiled knowingly and said, "I want butter!". You can tell I was pretty excited!

Later that day, he was having his smoothie, which he calls 'milk', and we were practicing saying 'milk' clearly. I had poured his smoothie, and he now wanted me to add his powered vitamin to it. I looked puzzled, and he opened the cupboard and said his version of 'vitamin' (something like 'viykami'). Then he told me 'open', then 'stir', all spontaneously!

Then today, he was hungry (a lot of talking around food, huh?) and I was giving cereal. So I started prompting him "If you want your cereal, you can say 'I...' " and he chimed in "want eat!" Very appropriate, I thought, even if it wasn't the word I was looking for!

Enjoy talking with your special person this week. Celebrate every sound and word they say!

Kids with Autism and the Typical School Setting

I found this blog post and I'm just going to quote a bunch of it, give you the reference and you can go read it for yourself. The author, Lisa Jo Rudy, put my thoughts in words so much better than I could have. Jaedon was in a public school setting for 3 years and although I knew they were doing the best they could, it wasn't best for Jay. As I speak to therapists and teachers, I realize that there is no single clear understanding of autism, as their is of so many disorders. No 2 children look alike and managing in a classroom setting can present challenges. I won't say anymore. Read what Lisa says: (http://www.examiner.com/x-2007-Homeschooling-Examiner~y2009m2d9-Why-public-school-doesnt-work-for-kids-with-autism-part-two)

The IDEA is a terrific tool for including and accommodating the needs of many children who, in the past, were wrongly separated from their typical peers. It's a poor tool for including and accommodating the needs of children with autism. There are several reasons for this.

Children with low vision, or dyslexia, or other similar disorders were, before IDEA, excluded from the general classroom. Because their needs are well understood, and the same needs generally translate from one child to the next, it's relatively easy to help those children to successfully integrate into the general school population. All children with low vision need accommodations to either help them see (preferred seating, large type) or to substitute for sight (braille, audio books). All children with Dyslexia need extra help with reading. It's not unreasonable to provide a reading teacher for kids with Dyslexia, or a resource library of large print, audio and braille resources for children with low vision.

Children with disorders ranging from ADD to deafness are socially fairly typical. They are able to learn through imitation, pick up on body language (or tone), and connect with other children naturally. They usually want and need to fit in. In general, too, they are able to tolerate the ordinary noise, smells, sights and/or sounds of a large school setting.

Contrast all this to the child with autism.

To begin with, there is no "child with autism." Each child with autism is completely different from the next - not just in the ordinary way that people are different from one another, but in significant ways that have a huge impact on appropriate education. One child with autism is brilliant but prone to severe behavior issues. Another is non-verbal, mildly MR, and not yet potty trained. A third suffers from a seizure disorder and is easily upset by sensory overloads. Clearly, these children don't need - and in fact can't tolerate - the same academic setting. This means that every individual child with autism needs his or her own, unique program. No resource room, specialist, therapist or teacher can accommodate "autism."

Secondly, and just as importantly, the IDEA (appropriately, in most cases) begins with the assumption that children should be included in the general educational setting as much as possible. For the child with learning disabilities, physical disabilities, ADD or even MR, this really does make sense. These kids are socially as competent as anyone else, and as desirous of fitting in. But in the case of kids with autism, general inclusion (usually mainstreaming) may be a lousy option. That's because kids with autism are NOT socially competent, and may have no desire to fit in or make friends in the usual way. They tend to be victims of bullying - and often gain nothing but anxiety from the supposedly positive experience of mainstreaming.

When the child with autism doesn't do well in the generalized setting - a fairly common occurrence - there's no good place to go from there. The "autism support room" can't possibly accommodate the needs of all children with autism, since they're all different from one another. The "special ed resource room" is an even worse fit.

Where should the school place children with autism who can't thrive either in a general classroom or in an "autism support room?" In my opinion there are no easy answers to the question. And it's because of this reality that public school just doesn't work for most kids with autism.

See Lisa's postings at http://www.examiner.com/x-2007-Homeschooling-Examiner~y2009m2d9-Why-public-school-doesnt-work-for-kids-with-autism-part-two

Melody of Autism!!

So much to learn! So much to share!! I've decided to host an autism awareness event and fundraiser. I don't want to scare people about the rising numbers of diagnoses and the tragedy of a one size fist all approach, or anything like that. I just want to celebrate and encourage others to do the same. So much more happens when we can find joy.

So, more details to follow, but the event is called the Melody of Autism, on April 18th, 3:30pm in the NE Bronx (972 E 227th Street, Bronx, NY 10466). We will have celebrations in song, dance, instrumental and poetry, as well as commentary from parents and others who have worked with children on the spectrum. We are putting together a wonderful resource booklet and we even have a dream gate prize: a $250 gift certificate to Buttermilk Falls Inn and Spa (they have an amazing spa! The hot stones we wonderful!!). Contribution will be $20 at the door. I will post flyers and location details very soon. I hope to see you celebrating with us!!! Tell your friends!

Break The Watch!!!

I've been thinking about breaking my internal watch. So many things are driven by time! I think time is a great construct, but can I just have it there are a structure, like the walls in my house, and not think about it all the time? The more I think about time, the less present I am. When I have lots to do, it's hard for me to settle down to give time to 'slow' tasks, like being in the playroom or reading to my kids. Don't get me wrong! I'm much better than I was. I just wan tot continue being aware that time is just a structure and that I'm in control.

I want to just be. Be in the playroom and say to Jay, "I love you just as you are and for as long as you are as you are". Even thinking that thought is so calming and centering. No stressing about his age, about the apparent regression in potty training, about his increased motivation to get what he wants (and the thoughts of aggressive behaviors). I know that the scare tactics don't really work and scared isn't the way I want to live my life!

Thanks so much for being on this team with Jaedon. I encourage you to get really good at breaking the watch and being in the moment. Whenever you hear yourself wondering how long Jay will just sit there on the bed, or how long he will pound his shoulder with the straw, slow down and think how much of a blessing it is to be with someone and love them unconditionally. Let's all practice getting rid of our checklists in the playroom. Let's evaluate ourselves after we get out of the playroom, knowing that we are always moving from a point of good to better, NEVER from terrible to not so terrible.

By the way, this works with everyone in our lives. Imagine showing love in all our relationships this way!

Acupuncture and Jaedon

Just a quick note: Jaedon is going to start acupuncture soon! I have has the good fortune to meet an acupuncture practitioner who is has a son with ASD. She is willing to treat Jaedon, so we did the initial consultation today. She came to my home with her mentor, a very compassionate man who teaches acupuncture, treats many kids with autism and who also has a son with ASD. I cannot describe how much I appreciated that home visit, since taking Jay out has become very time consuming and difficult. A 30 minute appointment can take up more than 3 hours of life. I'm looking forward to starting and seeing how it goes. I'm really hoping to help him relax so that he can spend more time just playing. So much learning happens with 'just playing'.

The Gift of Joining

I went into the playroom today! Yeah! Today is the first offical day of Jay's program for 2009. We took a break from his birthday until yesterday, about 7 weeks. It was wonderful for me to spend time exploring my thoughts, not needing to train anyone, to give any feedback or anything. I recharged over these past few weeks, and now I have my attitude in place, my 3 E's on my belt, a new list of potential volunteers going through and I'm ready to go.

I was training a new person today, and went into the playroom half hour before her scheduled arrival, since I hadn't been in for a few months! Jaedon and I had a great time playing with lotion. I would say he was moderately interactive, perhaps a 6, on a scale of 1-10. He worked on saying the word 'lotion', approximating it as 'who-shah'. The 'L' sound is challenging. I should reseach some tips on helping him with that. Anyway, I worked on NOT being on an agenda with him, just joining when he was being repetative, being user friendly and helpful, and challenging him to say 'lotion' as often as he would allow. In that moment, it was just me and Jaedon, him doing whatever he wanted, me loving him. What a gift it is, to be with someone that way! No judgements, no agenda, just wanting to be there with him. It felt great, a wonderful loving thing to do.

So many volunteers in our program have struggled with joining. They may feel like it's a waste of time, or wonder if they will miss an opportuntiy to interact. Today, I found myself explaining it as 'being in the rhythm of someone's life'. Jaedon has a flow and music all his own. When I join, it's like I get into that flow too, and we are like 2 bouys bobbing in the same wave of the sea, 2 migrating birds in flight. The goal of joining is to build rapport. What better way to do that than to completely be available to just ... be? In this comfortable place, with a beautiful connection being built, I will know the right time for interaction. Yes, I know the signs to look for because of trainings and consultations, but I don't mean that. I mean, I will know because it will just come to me, like a poem comes to a poet, like the solution to a problem comes in an "Aha" moment to a mathematition, like the location of a bug used to come to me when fixing computer programs (in a former life). I can trust that this knowing will come, so I can just let go and join.

As I connect with Jaedon this way, I get a deep sense of what it must be like to give this gift to others in my life. I think I'll add that to my list of new year's resolutions. You should try it too.

He's 10! What are you thankful for?

So much to talk about. Where do I begin? First, a quick update on Jay's project: We are at $2,200 in our fundraising drive so far, thanks to every one's participation. Everyday that even a small thing happens towards our goal, I feel more and more encouraged. We will get there!

Jaedon's 10th birthday was really significant for me. It's usually in the week of thanksgiving, and is a constant reminder of all I have to be thankful for. Jaedon is really a gift from God to us. One day, I'll tell the story, but he is no accident!! This birthday, I felt sad and took some time to look at that for myself. I realised that our son-rise program had given me a lot of hope, and I had set a time limit on Jay's recovery. The picture in my mind of him at 10 hadn't yet happened. I had no new pictures and was losing hope. I was choosing to feel despondent, to focus on a future that I don't want, maybe as a way of motivating myself to work harder. It felt horrible.

I keep talking about the importance of a team. Team Jaedon really helped me during this time. I reached out to the team, actually, and they poured in. I went to the Happiness Option Weekend at the Option Institute, and started the process there. More about that later, but if you have never been to the Option Institute, run! don't walk to the next program they have. I definitely recommend HOW. Jaedon got some new people on his team there, just more folks pulling for him and helping all of us believe and hope. One thing that was clear to me after the weekend, I really love and accept my son just as he is! Then, I reached out to some Son-Rise teachers and parents. I had a wonderful conversation with a teacher and got a great tip: What about spending 10 minutes every day thinking about who Jaedon is right now, and allowing myself to experience huge feelings of love and acceptance for him, right in the moment. I should take some time to reinforce my beliefs. That way, when he does things that I may be tempted to worry about, my reinforced beliefs will support me in the moment. The days I have done that have been much better that the others! I really didn't like the feeling of anxiety and panic. Jaedon didn't like it either as I dealt with him!

I had another great conversation with my favorite Son-Rise mom, a friend in CO. She shared similar having similar feelings when her son got to a particular age. It was great to know I was walking on a path that others walked. We affirmed the path as one that leads to growth. I get to examine my beliefs and constantly choose the ones that I really want. I get to challenge my own thinking and shape it the way I would like! Thank you, Jaedon! I'm not sure that I would have engaged all this growth had it not been for you.

So, Jaedon is 10 and I am excited for the future! I'm networking with other son-rise families in the NYC area so that we can work together to get volunteers and fund raise for our programs. If you know anyone with a child on the spectrum in my neck of the woods, I would love to talk with them. If you know anyone who wants to be part of a child's team, talk to me. I'm also trying to get a hyperbaric chamber ($12,000) and to add neural feedback ($7,000 for 6 months) to Jaedon's list of interventions. So, I'm ready to take fundraising to a new level.

Hey, don't let your present situation limit your belief and hope for what you can have in your future.