Sooo many times, our attempts to 'fix' those around us are really attempts to control them, and their interaction with us. Since I'm on this theme of loving acceptance, it has occurred to me, being controlled can feel very un-loving!!!
Wednesday, May 27, 2009
Giving or Taking Control?
Sooo many times, our attempts to 'fix' those around us are really attempts to control them, and their interaction with us. Since I'm on this theme of loving acceptance, it has occurred to me, being controlled can feel very un-loving!!!
Sunday, May 10, 2009
More and more on this issue of acceptance...
Monday, May 4, 2009
More on being REALLY Accepting...
Sunday, March 15, 2009
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. 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!
Monday, March 9, 2009
Kids with Autism and the Typical School Setting
Saturday, March 7, 2009
Melody of Autism!!

Monday, January 12, 2009
The Gift of Joining
Monday, October 27, 2008
Our Garage Sale! Go Team Jaedon!!!
I think every child with a special challenge needs a team of people pulling for him/her. That team gives energy to the family members who are on the field day in day out. The team encourages us, sees progress sometimes when we don't see it, and gives to us when our reserves are low. Jaedon has an amazing team that he has pulled to himself. It's been my privilege to meet so many great people because of him, and I look forward to the great people we have yet to meet.
If you aren't part of some special child's team, step up! Join up! I know you know someone who has a challenge of some kind. 1 in 166 children are diagnosed with autism. 1 in 5 boys are diagnosed with a learning difference of some kind. You can make a huge difference. Some parents just need a shoulder, a voice, a face. An offer to babysit for an hour so a mom can breathe or take a slow shower is invaluable. You can play, you can learn special ways of interacting to help with an area of challenge, you can raise awareness, you can fund raise. Call that family up right now and offer to help. Be a HOPE dealer.
As for Jaedon's team, thank you for loving and giving. Ideas are now flying around in everyone's head and I think we will have several fundraisers over then next few months. More than anything, that means we get to talk to lots more people about Jaedon and children like him, spread awareness, give hope, and inspire people to create their own teams for their own special child.
PS, it's not too late to join in our present. No donation is too small.
Thursday, October 2, 2008
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!
Monday, September 8, 2008
Pause, Look! Silver Linings Everywhere!
This morning, Jaedon woke up, got out of bed, went to the bathroom, and peed (pardon the indelicacy). Some mornings, I would have jumped into the day (to be ahead of him down the stairs and minimise unsupervised "explorations"). This morning, I paused long enough to say "YEAH!!" I remembered the countless mornings that led into afternoons cajoling, begging, bribing, trying anything to get him out of bed. I remembered the nights he would not go into bed without being lifted, and sometimes not even then. With autism, it's so easy to always be working on the next thing, not stopping to celebrate the gain today. So today, my son got out of bed by himself AND took himself to the bathroom AND peed.
The victories of today are reminders that the challenges of today are the victories of tomorrow. I am sooo looking forward to some poop in the toilet!
Speaking of celebrations, I am so grateful for the thoughts, prayers and encouragements from everyone concerning this ambitious birthday present for Jay. As the contributions become tangible, I will let you know how it's going. I did get a $5 gift by paypal and I was really excited. No minimums here! All contributions welcome!
Wednesday, August 27, 2008
Jaedon's almost 10!!! Let's give a big present!!
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 yo- 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.
