A little piece of heaven

Today we had our first appointment with an Anat Baniel Method therapist in the San Diego area.

We left at 9:30 am after Nathan’s morning therapy and drove straight without stopping to La Jolla. Nathan watched his new favorite movie n the car – Alice in Wonderland. Don’t ask me why but he just LOVES this move. Mary, my life saver and Nathan’s nurse, came down with us and drove so I could do a little bit of “work” while in the car.

I decided to enroll Nathan in the CCS MTU so we could get the process started with his communication device (thanks Erin!!). I am hoping that Regional Center won’t kick us out of therapy, but if they do, I am going to fight them and argue that CCS offers medical therapy, while Regional Center offers developmental therapy. It’s a risk, I know, but one worth taking at this point. So I made the phone calls so we could get the ball rolling with his communication device.

We arrived at Moving to Learn about 15 min’s before noon and had a quick lunch. At noon Nathan was ready to go.

Kristi started by explaining to us a little bit about the AB Method. She explained that it’s all about getting Nathan to learn how to move his own body. The therapist will stimulate different areas of Nathan’s body in order to create new neural pathways and movement reactions. She laid Nathan down on his back on a massage table and started touching and holding different parts of his body. She started working on the ribs in order to try and teach him to open his hands. She also worked on getting him to move his head from side to side and to teach his body to roll from side to side. I will share a couple of clips in the next day or two so you can watch as she worked.

Nathan was HAPPY and relaxed throughout the therapy. He had his “taking in and absorbing” face while he worked. He usually wears that face when he is interested and excited by something. After a little while I did notice that Nathan seemed to break out of his ATNR reflex and started moving his head and arms better. After a little longer he seemed to start opening and moving his hands more, especially the left which is usually fisted. Towards the end of the appointment he just seemed to be moving more in general.

Krist talked to us throughout the appointment. She suggested that instead of asking Nathan to do things, we just watch and interact with him and let him initiate movements. She told us not to celebrate when he first does new movements, but to wait for him to do them several times so he “owns” them a bit more – then we celebrate. She talked to us about being present with him without overstimulating and “leading” him – just watching his cues and following his lead. I’ll share move of her tips and information in the coming days.

We’ll be down in San Diego until Friday. Nathan will see Kristi twice a day on Wed, Thurs and Fri. Then we’ll go home Friday evening and come back down for two more days on Tues and Wed.

We also saw an Osteopath at the Osteopathic Center for Children after his nap. She was amazed by how strong his body was and said that in general he was “flowing” well. She gave him a little tune up, since it’s been a while since he’s had Osteopathy. Again, he was pretty happy and relaxed during the treatment.

In the evening we went out and had dinner at a Vietnamese restaurant and then walked back to where we’re staying. We then went grocery shopping and had an early night!

More videos and pictures tommorrow.

Thanks for checking in on us!

This morning was Nathan’s first day at the Waldorf Preschool. It was the most wonderful experience!

I arrived at the preschool nervous, tense and anxious. Is this going to work? Are the other moms going to accept us? Are the kids going to accept Nathan? All of the other kids are typical, so I was very curious about how they would react to Nathan.

I took a deep breath before we walked into the house (the preschool is at a Waldorf educator’s house). We found everyone in the back yard. Most of the kids were playing quietly by the sandbox. I said hi and took Nathan straight to the sandbox so he could join in with the other kids. One of the kids (I’ll call him D), came by and gave Nathan a welcome hug.

The environment was quiet and peaceful and the moms were standing back just watching and letting the kids play. I had to hold Nathan so I was the only mom in the kids area. After a few minutes, the lead teacher started singing a beautiful song and the kids understood this as their cue to go inside.

We all went inside into a living room / play area. The moms and teachers sang a couple of songs to help transition the kids into a different environment. They used hand gestures, puppets, and movements with the songs. Then the kids started playing in this area. All of the toys were handmade – no plastic, synthetic toys. There was a little play kitchen, a whole bunch of beautiful silk scarves, and many wooden and cloth toys. The kids played independently or in groups of 2 or 3. There were only 6 kids total in the class. I put Nathan on his belly and just left him to watch and enjoy the other kids. He complained for a second, so the teacher picked him up and took him to one of the little areas so he could play with one of the kids. He was so happy – he radiated excitement and joy! Then after a little while we put him on his belly and he was happy to observe and kick and squirm while on his belly. A couple of the kids went up to him and got on the floor with him and tried playing with him. He squeaked and squealed and laughed.

After this we transitioned into the kitchen – again, with a song. All of the kids sat around a table. One of the moms cooked very healthy pancakes so all of the kids enjoyed a snack of pancakes and fruit. We had brought Nathan’s food but he wouldn’t eat it. He knew his food was different (gluten casein free), so he kept staring at what everyone else was eating. I understood that he wanted to partake in the same food as everyone else, so I figured it would be appropriate to set aside the diet for just one meal and let him enjoy what everyone else was enjoying. All of the kids, including Nathan, happily and quietly sat and ate their snack together.

After all of the kids finished, we transitioned back outside to play. I put Nathan in his kidwalk and allowed him to stand in the kidwalk by the sandox so he could watch as all the kids played and ran around. At one point, I moved him away from the sandbox. He wasn’t happy, so he turned his body back and started walking back towards the sandbox! I can’t describe how amazing this is! Thus far Nathan has taken steps in his walker – but I never felt like he really understood the correlation between taking steps and going somewhere that he wants to be. Today I could almost see it registering in his mind. I want to go there, and to go there, I can move my feet and take steps, and then I will get to where I want to go. It was amazing!

After a few more minutes we transitioned back into the playroom with another song. Inside the playroom we did circle time. We played ring around the rosie, and a couple of other “circle” songs. Nathan smiled and laughed and smiled. We sang a bye bye song, and went home.

The experience was beautiful, peaceful, happy, constructive. The energy of the group was just extraordinary, peaceful and positive and calm.

I feel so “right” about this preschool, I feel this is one of the most beautiful gifts we’ve given Nathan thus far. He was stimulated in so many ways – by being outside and playing, by touching sand and toys with many different textures, by listening to the children talking and engaging with them. I feel as if all of his senses were stimulated – sight, hearing, touch, taste and smell. All in a calm and peaceful context, which allowed him to “take in” everything without being overstimulated.

Overall – what an amazing experience!

I got back yesterday from the Cerebral Palsy Conference in St. Louis, Missouri. The weekend was full of tears, laughter, emotions, and lots of information!

Here was the agenda:

As you can see the covered MANY different aspects related to Cerebral Palsy. I’m going to break this post into sections so I can describe things adequately:

Conference Sessions

Most of the speakers are connected to the Cerebral Palsy Clinic in St. Louis, Missouri and covered various aspects of the management and care of children with CP. They discussed everything from orthopedic and surgical interventions, to vision, to behavior, to various drugs available to help kids with CP. They also presented about some of the current research being done in the field of CP. It would be incredibly difficult to summarize about 15 hours of information here. So I’m just going to summarize this section with one reccommendation: If you have a child with CP – schedule an appointment to take him/her to see Dr. Jan at the CP clinic in St. Louis. She has assembled an amazing team and they can evaluate and give recommendations for your child’s care. They have quite a long waiting list, so it may take some time. But this team seems highly skilled and able to help manage a child’s care very adequately.

Inspiration

My favorite part of the conference was all of the presentations by children and adult living with cerebral palsy. They had children’s doing presentations, talking, families giving inspirational talks. What I seemed to hear over and over again was – First and foremost, I am a person, just like every other person. Don’t treat me like I’m different. Treat me like I’m just another person.

Nathan has no words – he has no voice. But I felt like I heard his voice through the voices of other kids with CP who can speak. And they all said similar things. I want to have fun. I want to live a normal life.

During the conference they talked a lot about “inclusion” and about how to “normalize” the lives of kids living with Cerebral Palsy. They talked about and showed us ways to make sports and daily activities “accessible” to our kids. I saw quadruplegic kids dancing and doing karate. I saw photos of kids included in all sorts of activities. It was just amazing! I felt so inspired.

If there’s one thing I “took” from this conference is the realization that Nathan’s life has to be as “normal” as possible. We will continue to do therapy and to keep him stimulated, but I realize that I have to do this in the context of “regular” activities. I will write more in the coming days about how I am going to be doing this with Nathan.

My favorite part

My favorite part of the conference was meeting and talking with other families! Even though we try hard to live a “normal” life – it is wonderful to share stories and experiences with others in similar circumstances! It’s easy to feel isolated when in the context of our “normal” lives because the things we experience are so different from what other moms and families experience. It’s pretty cool to be able to spend hours talking to other people who can actually understand and relate to what we’re going through!

Back Home

I returned home yesterday to find Nathan dirty, badly dressed, but very happy! He was radiant and peaceful and chilled out. Him and daddy spent the weekend having fun! They went out together Friday night, Saturday they went to Universal Studios and went on many of the rides and saw many of the shows. Saturday night they saw Monsters Vs Aliens in 3D. They picked me up at the airport in Orange County and on our way home we stopped at Disneyland and spent a few hours there. By the time we got home yesterday he was exhausted but happy as can be!

Seeing Nathan so happy affirmed the decision that I made after the conference – let’s have as much fun as we can and incorporate his therapies into a fun and enjoyable lifestyle!