A little piece of heaven

I am exhausted and slightly traumatized.

Nathan screams and screams during the patterning. He is becoming less effective on the incline plane, and gets mad the moment his belly touches the floor. Am I traumatizing him? Am I hurting him? My arms hurt from trying to overpower him during the patterning. My soul hurts from putting my baby through all this.

But in my heart I think this will help him. Deep in my heart I know this is what’s best for him in the long run. I can already see very slight improvements. He is eating better. He has slightly improved head control. He is moving his legs more when he is not patterning.

I can understand his pain. His body probably hurts from the unusual movements. His heart aches from knowing mommy and daddy, who previously bent over backward to do whatever he wanted, are now forcing him to do difficult things with his body. And I wish I could make it stop. But stopping now would be a much larger injustice to him in the long run.

It leads me to wondering..could it be that the fact he is so so so delayed with motor development relate to the fact that we have NEVER made Nathan spend time on his belly? He’s always hated it so much that we’ve just never forced him to do it. We believed that he was getting enough conventional therapies that tummy time wasn’t that important. Could it be the reason why his body is so unable to move?

Everything I’ve read about brain plasticity indicates that his brain should be able to compensate. I’ve been reading about a lot of kids with holoprosencephaly, CP, and other brain damage that have gained important skills and mobility. Could the difference be that these kids are made to spend more time on the floor? This is what Glen Doman claims in his book about brain injury. One of the single most important realizations he made was that the brain injured children that progressed the most were the ones that spent a lot of time on the floor on their bellies.

We are already working on floor time, we have been increasing the amount of time Nathan spends on the floor. But now I am afraid that the emotional trauma will block his ability to do anything while on the floor on his belly.

I have sought out help from the people at Reach to give us ideas about how we can help Nathan enjoy the patterning. Hopefully I will hear back from them soon.

And I wonder..when we were teaching Nathan to go to sleep..we had to let him cry a few times for him to learn that we weren’t going to “save him” when he woke up in the middle of the night. Then, I had to teach him to go to sleep on his own in the same way..he cried a few nights, then learned to fall asleep on his own. Even lately, we had to go through the same thing for him to learn to fall asleep on his own, in his crib, for his morning nap. But now he can do all three of those things, after a few days crying. Maybe we just need to do the same with floor time and patterning?

I hope to report good news during my next post.

When you realize there’s not much the medical community can do for you, there’s one kind a doctor I really like – one that will help us out.

Today I took Nathan to see a neurologist. I was honest and told the doctor the only reason I was there was that I needed lots of prescriptions. We talked for a little bit, he carried Nathan, who subsequently spit up all over him, and then asked me exactly what I wanted.

I said, I need a wheelchair, a stander, a gait trainer, a vital stim machine, and a feeding chair.

He wrote them all out, handed them to me, and told me to come back in 3 months.

My first words out of the office were – SCORE! I love that kind of doctor 🙂

Now I can start the process of getting him all that stuff. I’ve found the stuff I want:

– Wheelchair: http://www.thomashilfen.de/easys/index_english.htm
– Stander: http://www.standingdani.com/kidsterdani.shtm
– Feeding chair: http://www.adaptivemall.com/sptososi.html
– Vital Stim: http://www.vitalstimtherapy.com/aboutvs.asp?section=patient&topic=whatisvs

Hopefully I can get CCS or insurance or someone to fund all this stuff. We’ll see!

As for today’s REACH program – same old same old. We only did 2 sessions and Nate complained the first one, screamed the second one. But we will forge onwards as I really believe this program is going to make a HUGE difference for him!

Here’s a video of him on the incline plane today:

Today we had a similar experience as yesterday. We only got through 2 patterning sessions. During the first one, he cried and cried, it was heartwrenching. I had to go away afterwards and meditate and really get my mind straight.

For the second one, I talked and talked to him. I explained why we were putting him through this. I told him I loved him and just want to help him. I tried to set a really good intention and peaceful heart. It worked! During this session he complained but didn’t cry – I even got him to laugh at one point! So things are looking up a bit.

In the end, sesame street and the IPOD didn’t help, but good old fashioned love and respect was the key.

I think the new movements and exercises are wiping him out. He is sleeping more and by evening is exhausted. He went to sleep at 7:20 pm today, which is highly unusual, usually he goes to bed at 8:30pm.

I hope tommorrow we can fit more sessions in, right now I am wondering how we are going to ever get through 6 sessions!