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.

Is Jaedon Being, or Doing?

First, thanks to to everyone in Team Jaedon, the people who are pulling for him, praying for him, giving to his project and doing anything else. So far, I have collected $350 towards his present, and have heard from many others who are working on contributing. I'll keep you posted! And speaking of posting...

Sitting on the inside, standing on the outside. That is the classic example of a child who is DOING one thing and BEING something else. With autism, it's so easy to get caught in the trap of valuing externals. There are so many things that are externally 'abnormal' that I'm often tempted to just get them 'fixed'. I remember looking at Jay when he was 2 and saying to him "Just stop flapping your hands! Then, people will stop thinking something is wrong with you." I've come a long way, and have come to value cohesion and consistency: insides and outsides matching up.

Jaedon's biochemistry is different from many other kids. I remember a doctor saying to me to forget labels. He said "If my biochemistry was like his, I would behave that way too!" Now, we work hard on helping Jaedon to grow inside out. Son-Rise (www.son-rise.org) really focuses on who the person is internally and motivating internal change. The biomedical interventions focus the same way. I know with myself, if I change on the inside, I'll really change, and it will be permanent. Something I work up because of external pressures tend not to be as permanent. Otherwise, I would still be going to the gym every week! So, when you look at Jay, smile, and he smiles back, he means it!

A few days ago, we went to Columbia's medical school to participate in a study looking at kids on the spectrum, and their typical siblings. After several hours of testing, the tester told me we didn't qualify for the study because she couldn't get a high enough IQ score. Jaedon is is difficult to test using the typical instruments available because they require reasonably strong receptive language.

Looking at him with a tester may cause you to believe he doesn't understand what is being asked. I've come to realise that a lot happens after understanding and before demonstration of understanding. A typical example is me asking my husband "Honey, could you get me my purse in the kitchen?" while he's on his computer. It would be foolish to assume he doesn't understand my words when no purse is forthcoming! He could have not heard, because he's busy, he could have heard, and forgotten because he quickly went back to what he was doing, he could have heard,and was thinking about it "doesn't she see I'm busy?", he could be plain unmotivated to move. All are possibilities for the child on the spectrum and I know many of these are true for Jaedon. Without the burden of social pressures, why would he respond to the tester's questions and requests except for genuine interest?

Anyway, on the one hand, this psychologist said she couldn't get the scores she needed, but she did comment on a few things:

- Jaedon has joint attention (he looks at a person, at an object and back at the person he wants to show the object to). Babies 10 months old can do this, and Jaedon has never demonstrated this on a test.
- Jaedon has a warm social smile, reciprocating a smile when someone smiles at him (if he likes you)
- The tester felt he connected with her.
- Jaedon showed emotional strength and stability by being warm and relaxed even at the end of the testing.

These things seem so simple and are taken for granted in typical children, but the tester felt they were a credit to our focus on who he is on the inside.

Another story about Jaedon being. I was out of town last weekend, so he last saw me Thursday night, then Monday morning. I know he misses me when I'm away, everyone says he's different, but when I return, there is usually no major response to me, maybe a smile. This time, I saw him and said "Hi". He enthusiastically said "hi!", grabbed my hand, led me into the living room with him, looked at me holding my hand and shouted "hi" to me seveal times. That was really amazing for me. He was happy to see me! He accessed a socially appropriate feeling and demonstrated it in a socially appropriate way!!! Yeah Jaedon!

So, as we continue, I'm excited by the changes I see in Jaedon every day and on the days I'm not seeing what I'd like, I know Jaedon is WYSIWYG, what you see is what you get! When I see progress, I know the change is really there on the inside!

Jaedon's almost 10!!! Let's give a big present!!

My goodness! Where does the time go? I've been reflecting on this journey our family has been on, and decided to start this blog. There are so many lesson's I have learned along the way, so many left to be embraced. I hope some of my thoughts inspire others to embrace and better digest the lessons available in their journey.

Right now, I'm thinking about $18,500 that I would like to execute my plans for Jay's birthday. Let me tell you about them.

When Jaedon was 2 1/2, I was introduced to the Autism Treatment Center of America and their Son-rise program (http://www.son-ise.org/). I fell in love. We visited the center for a week when Jay was 4 and had 35 hours of personal training in implementing a program in our home. Jaedon received 40 hours 1;1 therapy using the son-rise approach. The changes in him we remarkable! i was bowled over, and by the end of the week I was in tears. There was hope for my baby, a child for which the traditional medical community offered little hope. We started implementing what we could part time, and began running a full time program when he was 6 years old. I'll spend several blog entries telling you about the roller coaster ride that this has been.

We have also done a range of biomedical treatments and have found Jaedon to be most responsive to Methyl B12 injections and Hyperbaric Oxygen Therapy. Both these treatments gave us a jump in his language development and and cognitive function. We haven't been as consistent as we would have liked, so Jay will make progress for a few weeks, then regress for a few weeks between treatments. We really want to see how much progress he would make if he was consistently receiving his treatments.

Jay is now 9 and has changed so much. We have certainly learnt a lot. As always, theory and practice are miles apart, but we want to close that gap, but need some help to do that. Specifically, $18,500 will close the gap between what we know we should do with him, and what we can do with him. Consider helping us close that gap and give him the future he can have. We know the sky is the limit for him, with the right intervention.

This is what we want to do in the next 6 months for Jaedon

• 4 (6 hours each day) days intensive therapy from son-rise staff, parent and other staff training, goals setting and implementation strategy development- $5,000
  
• Parent Training at the Option Institute - $2, 900


• Methyl B12 injections (by prescription) - $600


• Hyperbaric Oxygen Therapy (by prescription) - $10,000
  

Send me email email if you want to participate in this project in any way. You can donate simply, through Paypal, or by contacting me directly. You may chose an aspect of this project to support, and send the money directly to the relevant organisation/institution.

So many families face these challenges. Send me email if you know someone dealing with the challenges of autism and just want to talk to someone who might understand. I can't be learning all these things for nothing!

Thanks for keeping Jaedon in your thoughts and prayers.