Nathan was always oblivious to our daily celebrations that “Papa’s here!”. He would stay were he was while his twin and younger brother would run to the door to greet Papa. Recently he would look for Papa during the day and say, “I want ‘Papa’s here!’ “. So when Papa gets home he takes Nathan on his lap and they enjoy making faces at each other. I love watching these bonding moments.
Nathan sometimes has echolalia or verbal “isms” – exclusive, repetitive behaviors. An example of which is saying “crystal” repetitively.
When he does verbal “isms” do you think that Nathan is trying to have a conversation with you and
A. Nathan is trying his best? Or
B. Nathan can do better?
If you chose “A”, you probably celebrate every attempt he makes and this will encourage him to try harder next time. If you chose “B”, do you recognize his hard work? or do you express your thoughts, almost saying “come on Nathan, you can do better!”?
I would prefer saying: Nathan is trying his best…and we can help him do better.
This video tries to express how Nathan might feel. In the first part, I play Nathan “isming” with the word “Crystal”. Kristine is asked to continue asking about what “Crystal” meant. She asks a series of simple questions, which to Nathan might feel like an interrogation.
In the second half of the video, Kristine is asked to join Nathan the Son-Rise way by repeating the word “Crystal”. I then try to express how Nathan might feel when we join him.
“Isms” help autistic children in many ways. They “ism” because:
1. It makes them feel better
2. It gives them control over the situation.
Nathan can never predict what you will tell him or ask him. It could be frightening for him. Remember how you were in your worst subject then all of a sudden, the teacher calls on you? That’s how Nathan might feel. For him to feel that he can better control the conversation, he will stick to one word, “Crystal”.
3. It gives them a sense of comfort.
If too many word are thrown at Nathan, it may become too overwhelming for him. As we have observed, he already needs a few extra seconds to process a question, what more a series of questions. The best way to relief the stress is to stick to one word, “crystal”.
4. It has a curative nature
While echolalia is seen as a sign of autism, it could simply be a prolonged phase that autistic kids have to accomplish before reaching higher levels of speech. Most kids will go through a brief, almost unnoticeable, phase of echolalia, which is important for them to recognize then understand new words. For autistic children, this phase may take longer but this is not to say they cannot go beyond this stage. While Nathan is enjoying repeating words, this may be creating new pathways in his brain that will become the highway to higher levels of conversations later on.
Bottom line: Celebrate his verbal “isms” by joining him. When he is ready, let’s challenge him to have conversations.
This week wasn’t a good week in terms Nathan’s sleep pattern. His schedule has gone crazy and last night he woke up crying.
We went to see Nathan’s Physical Therapist. Last time we saw him was a month ago. He said Nathan’s walk and posture has significantly improved. It looks like he has woken up new muscles in his legs. He asked my what kind of (physical) therapy I was doing at home with Nathan. He knows that I pulled Nathan out of school and other therapies to run a home-based Son-Rise Program for Autism. Maybe he had doubts that Nathan would do better if I kept him home. I said all I was doing was allowing him to do what motivates him, like climbing up chairs and tables and standing while spinning on the swivel chair. I say “YES” to all his wants and celebrate his improvements, big or small. He had a surprised looked on his face…not really conventional physical therapy. Then I pointed out the amount of time Nathan was standing. He must be standing and balancing for up to 80% or more of his waking time now. A lot of time used to be spent sitting before. Then he was enlightened. He said that in a few months, the newly awaken muscles will start to grow bulk and we will see even more improvements.
And that is the scientific explanation of how a neurological problem like cerebral palsy can potentially be cured…and so can autism…through a home-based Son-Rise Program!
A year and a half ago I was trying to teach Nathan to answer the question “What’s Mama’s name?” So I made the song “Do you know Mama Chris, Mama Chris?” to the tune of “Muffin Man”. I haven’t sung that song since. Just this week he just recalled the song. Then he’d say “Mama Chris” and look at me. I’d ask him what my name was and he’d answer appropriately. Sometimes, he’ll say “Mama Chris” look at me then say “Papa Gil…I want Papa.” It’s so amazing his he now longs for Papa. He’ll say “ want ‘Papa’s here!'” referring to the way we’d greet Papa when he gets home from the office.
Nathan is sleeping and pooping better! I guess a lot has to do with time and energy spent on our son-rise program.
Nathan now enjoys standing on everything, chairs, tables, even the swivel chair. Since his balance is constantly being challenged, he has to put his whole body weight equally distributed on both feet for better stability. This is something his Physical Therapists (since he was 2 years old) have been asking him to do, or for me to help him keep his body weight on both legs to strengthen his muscles. He’s doing this on his own and correcting his body posture making his abdominal muscles to work just as hard. The stronger abdominal muscles must be the main reason why he has better bowel movements.
I believe this is the main reason why he poops almost every day now compared to every 3 or 4 days. His pooping schedule has been good for the past week or two. I hope this is a permanent change. The only other contributing factor I can think about is that I moved his prune juice from after breakfast to after dinner.
Nathan is also sleeping much better. Probably because son-rise takes up a lot of energy and he will get tired at the end of the day and sleep well through the night.
When Nathan was a baby we thought “colic” was the explanation of his sleepless, crying nights. It stopped for a brief period. When he was 3 years old, I remember logging his crying nights. In a month he would average 15 nights of crying, sometimes more. That’s 50% of the time. No wonder I would get just as cranky.
When we went to China for stem cell injections, I remember thinking, “If this will at least improve Nathan’s sleeping pattern, it will be a big improvement.” Crying, sleepless nights was reduced to about 25%.
At age 4 1/2, we opted for anti-epilepsy medication due to his abnormal EEG, also in the hopes of alleviating his autism symptoms. His crying sleepless nights stopped. There were only occasional crying nights. Note: there were no other long-term improvements in terms of autism symptoms. Its been more than a year since medication started and I’ve been feeling maybe his medication dose does not match his body weight anymore. He hasn’t started crying (well, not frequently) but he was getting up in the middle of the night and staying up, singing, for hours and falling asleep when it would be time to get up already. Sometimes he’d be really groggy at school or I would just keep him home. In the end, we decided against increasing medication. When I get brave enough, we’ll work on tapering his medication.
That’s his sleep history. But since this month, Nathan has been sleeping on time, no crying episodes, sleeping all through the night, and waking up in a good mood in the morning. I do hope, this trend continues.
Nathan’s twin sister said she wanted to “son-rise” Nathan. So I told her of course she could. So she got books for Nathan and herself and in a loving and accepting way joined Nathan as he “ismed” with the book.
At the end of her session with Nathan, Marie, my Son-Rise volunteer, discussed some of the things that happened. Nathan would ask for a cracker, as she responded, she would ask how he would like it delivered, jumping or flying. Sometimes Nathan would reply “jumping”, sometimes “flying” and enjoy watching the piece of cracker arrive. Sometimes Marie asked, “Who is this cracker for?”. And Nathan would confidently say his name. As we discussed, we realized, “Oh my! Nathan has progressed from one loop conversations to two loop conversations!” Ask him once, he’ll answer, then ask him a second question, he can now answer again! We will build on this so that when a third question is asked, he will answer!
It’s a little hard working on Nathan’s son-rise program when his twin sister and younger brother are home, like on Saturdays. So today I decided to take Nathan out for a walk.
A full-time son-rise program would recommend that the child stays in the son-rise program playroom all the time. The room is designed specifically to remove all distractions so that the child’s focus will remain on the son-rise facilitator. A conducive environment can help enhance the growth of the child. True enough, Nathan performs his best in his son-rise room.
These are some of the reasons why it is not the best idea to bring an autistic child out…but I’ll consider this a break and exercise for both of us.
1. Nathan has to pass by all the fire extinguishers on the way out. It doesn’t matter what I say, or even that I am around, as long as he gets to touch the attention-grabbing fire extinguishers.
2. If I had Nathan’s attention, he could easily read “FIRE” and a lot of other words but the red color just really catches his attention. Watch the video.
Passing through all the fire extinguishers on the way out
3. I guess the outdoors is a great way to stimulate the senses. Just feel the cold breeze on your face, the spikes on the bushes, the bounce as you put your weight on the bushes, the texture of the grass, the heat from wearing a bonnet in the spring 🙂 . With all that sensory input, who would want to listen to Mommy?
Sensory therapy outdoors
4. It wouldn’t matter if that video was 4 minutes or 30 minutes long. Nathan will find something to “ism” away with and ignore me. In the end, I had to carry him to the front of our building and encourage him to walk home.
5. Of course, on the way back, we have to pass through the fire extinguishers again!
Taking time to get home
This video seems ordinary. Even a 3-year-old can do this. But Nathan has cerebral palsy and autism. When he was dismissed from the Neonatal Intensive Care Unit, the doctor said he may not be able to walk. But today, he decides to challenge his balance, not only by standing on a swivel chair but also by twisting it with his lower limbs.
All his excitement and energy to do things on his own is coming as he progresses in his son-rise program for his autism.