Bitter sweet. An example of progress, and the question, do you really want to know what they’re thinking?

I was in the playroom with Micah and Ezra and we were taking turns in the swing. We had a great time, until Ezra decided that he didn’t want to give Micah a turn. Micah was already in the swing, Ezra flipped out, started screaming, and started hitting Micah on the head because he was so angry. What to do:

1) calmly and quickly remove Micah from harms way, and tell Ezra that this behavior is not alright, and put him on time out for hitting.

2) calmly and quickly remove Micah from harms way, acknowledge the bad behavior with a sentence like: I can see you’re angry, and then proceed to ignore him, giving the under-active parts of his ADD brain no opportunity to light up with your overblown reaction.

3) give him a furious look, get to his eye level, point your finger at him, so he knows you mean him and hiss: We DON’T HIT!

So in retrospect it is obvious what I should have done. Unfortunately I chose option three, acting on protective instinct rather than calm. Ezra ran crying out of the room. I followed him, trying to calm him down. He gave me a hug, I said I was sorry for hissing, but that hitting was wrong. He said, it’s Ok mommy. So why am I telling you this story, other than to publish my poor parenting moment? First of all, let’s keep it real. After all, I was given an autistic child, because clearly, I was in greater need to learn patience and temper control than apparently all other parents. And second, it led to a remarkable progress. When I sat next to him, he stammered “alone”. “Mommy alone”. After a few tries he managed to say: leave Ezra alone, mommy. He was telling me he wanted some space.Leave me alone mom, is definitely not the message I want to hear, at least not from a four year old. I would expect it from a teenager. It made me sad, but I was also thrilled that he was communicating an emotional need, a state of feeling. He very rarely says anything about how he’s feeling. Once in a while, he’ll say he’s happy, but that is it. Ezra is progressing nicely. I hope I can keep up his pace.

It seems that this last week was a bit of a challenge for me.  I think it has to do with Ezra being very hyperactive. When he’s hyperactive his isms increase, and although it should not cause me any concern, it does still worry me. In general they have gone up dramatically. Two possible reasons come to mind: he cut his finger pretty badly last week and had to wear a pressure band-aid. A kid as sensitive as him could be very distressed by that constant source of pain. When we tried to change his band aid he would cry and scream as if we were pulling his limbs off.  His vocal isms have been very strong, which have made me more distracted, as I am very sensitive to loud noise (really any noise is hard for me to bear). So if I’m not calm he senses it and is more withdrawn. The other reason I suspect is that we pretty much have taken away his TV time completely, except for now and then, when I have to be gone, and granny is with them. They told us at the sunrise program that if we took away the electronic devices we would see the true measure of his autism come out, because he would start ism-ing in other ways. That has held true for sure (although a little, unhelpful, selfish part of me thinks: quiet and happy kid zoning out in front of the TV for half an hour or screaming, screeching and jumping all over the place? Which one would you choose at the end of the day, when you’re tired and worn out?). I spent most of my playroom time with him just ism-ing.

There were bound to be some days that are more difficult than others. In general there isn’t much that I would change about my decision to have Ezra home. We have a much closer bond already, and I see more talking, and cooperating.

The road bumps I have encountered are these:

1. This week two of the three volunteers were sick. That creates some problems for me because,  A) Ezra doesn’t want to hang out in the playroom just with me for 7 hours (we both get tired. Imagine cheer leading for 7 hours), B) Micah wants my attention too, and wont tolerate being locked out, C) being in the play room requires preparation, because Ezra is more and more engaged and wants to do activities. Also, Ezra relies on his schedule, and has difficulties accepting change. So if I tell him a volunteer will come, and then doesn’t it’s very difficult, especially when he looks forward to seeing him/her.
2. Trying to find volunteers in a culture that isn’t service oriented, and finding those willing to speak English, rather than their own language, is a challenge.
3. Ezra misses friends, peers, just being around them. I wish there were some kids his age here that he could play with, especially boys.
4. When Micah or I get sick  I can’t do much with Ezra.
5. I stay home a lot, and start feeling a bit trapped.

What do I mean by trapped? I mean, that there are lots of little errands that pile up because I can’t really just leave Ezra and Micah at home with Granny to go do them, because they would freak out, especially Ezra, because he wants to leave the house. So that sometimes leads to me feeling like I never have enough time to get all the things done that need to be done, and I feel ineffective, and overwhelmed. Driving in the car is an ism for Ezra, as is going to a store, because it is visually stimulating. What happens when I do take him to the store is that we all end up frustrated and angry, because he will run off, won’t wait for me or listen to me. When it’s time to leave the store he’ll throw a tantrum, and Micah will usually follow suit. Then when I come back home he’ll throw a tantrum because he doesn’t want to get out of the car. So for everyone’s sanity it is best to minimize trips to the store with him. The whole reason for keeping the kids in the playroom as the Son-Rise program suggests, is because they can’t cope/behave in the outside world, and in the playroom we can go through these scenarios and give them complete control and teach them how things normally work. That is especially effective for autists who are hypersensitive to noise/smell/sound/images/etc. The playroom is a very distraction free, calm area for them. Ezra is hyposensitive, it seems, and so he craves input, but can’t properly organize it.

Anyway, so I feel a bit trapped sometimes, not necessarily because I’m home with my kids, but because I feel I can’t take them anywhere. It’s certainly an emotional/attitudinal problem that I need to sort out. I need to either be OK with them screaming and crying when I leave, or them screaming when I take them to the store. I’ve also noticed that it doesn’t really matter how much time I spend with the kids individually and together, they just want me around all the time.

Alright. I need to finish up this post. Ezra is crying upstairs again. He had a really bad night last night, and this one promises a repeat.

This day was absolutely AWESOME. I can’t believe how great and fun life can be. I think the fact that the sun was shining definitely added to my mood too. I’m so thrilled with how well this day went. I think it was successful because I had planned the schedule out and written it down for Ezra, and I took care of myself first, and so had enough energy. I have to admit I was a bit worried about having Ezra home full time, and was certainly anxious about today. I’ve had Ezra at home before and typically it was horribly stressful, and not fun at all, because he was all over the place, and I was constantly trying to modify and/or control his erratic, loud, and compulsive behavior, which if any of you have tried with your autistic children is a battle lost before it began. I got up extra early so I could do some meditative reading in the scriptures, and get ready before the kids were up. The morning started out so relaxed, because I didn’t have to get Ezra ready for school. Typically he has to be out the door by 8 am. At 8:30 am I said goodbye to him and left him to play with Granny while I took Micah to his little playgroup. After picking up a few groceries I headed over to the music school to practice. It is amazing how happy I am when I get to sing. The autism treatment center really stressed that the most important person in the Son-Rise-Program is me. If the administrator isn’t happy and at ease the whole program doesn’t work. Their view is also that our children are our teachers, and not the other way around, and that we can learn from them. This is why if you will be following this blog you’ll read a fair amount about my development too. So in order to have the strength and energy to work with Ezra, I first went to fill my well, by doing what makes me happy, which is sing.

At 9:30 am I came back home and played with Ezra for an hour and a half until it was time to go get Micah. It is such a revelation to just join your child in whatever he does, without trying to modify and control everything. Control is a real fun-killer. We had such a great time together, with lots of eye contact.I won’t give you an entire play by play, but here are some of the highlights of today, things he has never done to such an extent.

He gave his volunteer Daniel a hug and a kiss. When he was playing with Daniel we saw the longest pretend play sequence we have ever seen from him. He had daddy and mommy go to the bathroom, wash hands and then go to work and back again. Then mommy and daddy both cooked dinner in the microwave. During this play he answered a what, and a where question without any delay. Typically he doesn’t answer, or I have to ask 40-50 times. It was very exciting.

And earlier in the day he had his first coherent conversation on the phone with my brother. He just adores his uncle Dave and wanted to call him on the phone. With some prompting he waited for the signal and for Dave to say hi, and then said hi back, and asked him if he was working. When Dave said yes, Ezra said: when uncle Dave come home (our house). Dave explained he had to work still, and Ezra said, uncle Dave come soon, and then ended with his typical high pitched, loud, BYE and the hand wave to the phone.

I had never thought life could be this fun. Sure it required a lot of energy on my part, but I’ve learned through this program that energy isn’t something you have. It is something that comes when you act energetic.