A little piece of heaven

We just got home a couple of hours ago. What an amazing experience we had! Yes, it definitely got much much better as the week went along.

I’m too tried right now to write about it in detail – there’s so much to say! But I do want to say a couple of things.

Nathan did AMAZING! He responded so well to this therapy. He was super attentive, paid attention to what was being asked of him, and was hungry to learn. Neil and Sylvie taught him many different things about his body and most importantly, how to move!

Despite our negative experience in the beginning, it was a powerful week and an incredible learning experience for Nathan.

Tomorrow I will start catching up with posts about each of our days at the ABM center.

For now, my own bed awaits – yipee!!!

Yesterday, I almost packed our bags and drove back home after our appointment with Anat Baniel.

The day started badly. Nathan appeared to have caught a cold after he recovered from bronchitis two weeks ago. He had a very snotty nose and didn’t want to eat. I didn’t get much sleep as Belle decided to nurse every hour. I was still hopeful that things would turn around when we saw Anat in the late afternoon.

We had our appointment with Neil in the early afternoon and it went well. He worked on teaching Nathan how to roll from back to belly. With this therapy it’s hard to know exactly what the therapist is doing but Nathan was happy and he seemed to be taking all of the information in.

We took a break and went to the bed and breakfast. During this break I applied a natural vapor rub product that I found at Whole Foods. It seemed to help Nathan tremendously – his breathing improved considerably.

After a short while we returned to the ABM center full of hope and excitement, ready to see Anat. She was supposed to see us at 5pm, but didn’t turn up until 5:35pm. The minute she saw us, she started coughing and looked very haggard.

We went to the treatment room and she kept coughing. A couple of minutes into the appointment she asked us what we put on Nathan and proceeded to tell us she was very allergic to it. So I had to run out with Nathan and try and wash off all the stuff in the bathroom. It was in his face, chest, back – even in his hair. You can imagine the adventure, trying to get rid of it all. We even had to take his shirt off. After about 15 minutes of this, we went back to the treatment room and Anat felt a bit better, at least she wasn’t coughing every 2 seconds.

She started working with Nathan – touching him on his back, chest, arms. She asked me a couple of questions – what was his diagnosis, what other things we’ve tried. Mostly she asked about where we were staying, what I do for a living, etc. Then she put him on his belly and did an exercise where he was on his elbows with his head up. He did a good job lifting and holding his head up. She started making him sway from side to side, trying to get him to keep his head from flopping to both directions. In the beginning he flopped to both extremes. But after a few repetitions he was controlling his head and keeping it more in the middle, and if it flopped, he would bring it back to the middle on his own.

Nathan seemed to like it and started laughing. Then at some point he started sobbing uncontrollably. She must’ve done something to hurt him – I had to take him from her to calm him down. Then after a few minutes I gave him back to her. She did the same exercise a couple more times.

Then to my utter surprise she said, okay, we’re done. In my head I was like, huh? Done? We just started? But I figured maybe time had flown and I hadn’t noticed (this happens to me often), so I grabbed my kid and started getting ready to get out of the room. I asked her quizzically, is that it? She said, well unless you have any questions..but looked utterly uninterested in answering any questions. So I said, well I have a million questions but wouldn’t even know where to start. So she told me that I seemed to understand what was going on very dismissively. I grabbed my kids and left.

When we got to the car I looked at the time – 6:02pm. The entire appointment with Anat took 25 mins. Here’s the thing. During the entire week we only have 2 appointments with Anat. The rest are with 2 other practitioners that Anat trained. That appointment was supposed to be the “big” appointment – where Anat would evaluate Nathan, talk to us about him, his potential, his treatmetn plan, and spend a good hour working with him.

Instead she saw us for a grand total of 25 minutes (including the cleaning Nathan off debacle), didn’t say anything about Nathan, and sent us on our merry way. That was the most expensive 20 minutes of my life – the appointment cost $400. Yes, you heard me right – $400 dollars.

Oh and to top it off, one of the only questions that she did ask me about Nathan was – can he DO anything? I had to do a double take. Is Anat Baniel really asking me if my Nathan can DO anything?

I answered with my usual spiel – he is very smart, he understands everything, cognitively he’s at about a 2 year level, he just has a hard time with movement. But shouldn’t that have been obvious to her? If she’d tried talking to him directly she would’ve figured that out in 2 seconds – Neil, the other practitioner, did.

I sat in the parking lot for a few minutes wondering what to do. Disappointment can’t even describe what I felt. We have been waiting for this appointment and trying to get the funding together for a long time. Now we were finally here but this lady couldn’t even give us the time of day.

It took a humongous effort for me to go back to that Center today – but I’m glad we did.

Today Nathan worked with Sylvie, who was absolutely amazing. She spent 45 minutes working very hard with Nathan. She talked to him, treated him with respect, asking him to do things, and he responded well. Immediately she knew that he was quite smart but needed help mapping movement in his brain. I was so pleased with the appointment.

Our afternoon appointment with Neil also went well and once again I saw Nathan responding well and trying to integrate what he was being taught.

Honestly if we hadn’t had such great appointments with Neil and Sylvie we probably would’ve gone home. But watching the two of them I was convinced that there is great merit to this method and that Nathan has potential.

We also talked to 3 families in the waiting room. One guy was there from France with his 5 year old daughter – this was his 5th trip from France. He was convinced it was helping his daughter and that’s why he kept making the trip. We also met another family with a daughter who is 12 and has CP. She is physically very affected but can speak. I asked her if she liked the therapy and she told me she loved it, she only wished she’d started sooner. This was their 2nd appointment in 6 months. The 3rd family we met was a mom and her 8 year old son. She has been going to the Center for 4 years, and feels that it has helped her soon more than anything else.

After we finished today’s appointment we walked around downtown San Rafael and had dinner and a sorbet and a really lovely time.

I wish our experience with Anat had been different. But I am happy that it has still been a positive and productive experience. I can’t really tell if Nathan is improving functionally or not – but there is time yet! I’ll keep you guys posted!

Happy 4th of July! I hope everyone had a lovely day.

We spent our day driving up to San Rafael, CA. Tomorrow Nathan starts his Anat Baniel Method intensive. He will be seeing Anat a few times, as well as some of the senior ABM practitioners at the center.

I never thought I could do a drive like that – but we did it! I drove for 7 hours with 2 very short stops. Belle slept the entire time, and Nathan was entertained watching movies. They didn’t fuss at all and everything went incredibly well!

We’re staying in a super cute renovated Victorian house close to downtown San Rafael. Tomorrow when I have more energy I’ll post some pictures.

We were too tired to go back out to watch fireworks, so instead we gave the kids a bath and are now settling down to a much needed sleep. Fortunately nanny McPhee Marta is here with me so I have help getting the kids sorted out.

I’ll post tomorrow with an update of Nathan’s first session with Anat!!