Some musings

I’ve spared you my philosophical posts for some time now but since I’ve been on retreat for 3 days, I can’t help but feel contemplative.

It wasn’t long ago that I felt broken down and like I would never find help for Nathan. And it was at that moment of being broken down that we received the help and guidance we needed. And through a series of divine interventions we found CME Medek, and specifically, Ramon Cuevas. And tonight as I watched Nathan squatting to stand over and over and lifting his trunk up by himself and starting to align his head correctly, I was just inundated with gratitude. I can’t tell you how AMAZING it feels to have found something that you know can help your child, after traveling the world and being disappointed by one thing after another. My search is over, my worry is over. I know I have done the best for his physical development. If he doesn’t change from CME Medek, then it’s just not within his capacity. But from what I’ve seen, I’ve little doubt that he will not change – I’ve already seen him change. Soon I will write a post about the changes I’ve seen.

So now that I’ve got him in the best possible hands in the whole wide world when it comes to his gross motor development, here’s what’s going on in our lives:

We are planning and getting ready for a long trip to Santiago, Chile to see Ramon. We are thinking of spending 2 months there, working with Ramon as often as he can see Nathan.

We are wondering how to pay for the above mentioned trip. If you, dear reader, know me directly, you know I’m a “fly by the seat of my pants” kinda person. I’m doing that by committing to this long trip to Chile but I feel compelled to do it. I’m trying to figure out how to do a quick fundraiser, or ways of getting the help we need.

I have started thinking/focusing on Nathan’s ability to communicate, which at present is non-existent. We have tried many low-tech methods, and none worked. So now we are in the process of trying out a Dynavox Vmax with Eyemax. I almost have the settings ready and will post a video of Nathan using it soon. I cannot tell you what an overwhelming experience this has been. When we got back from Canada I found myself with 2 boxes with almost $20k of equipment ready for Nathan to use – without having ANY IDEA how to use it. I allowed myself to fall into a whirlwind of anxiety…now I have to become an augmentative communication expert. Fortunately Nathan’s speech therapist insisted that I need to keep it simple, which was a big help. So hopefully soon Nathan will have a computerized voice. More on this soon (next week – promise!).

We are getting ready for Nathan’s IEP and educational goals etc. I am in the final stages of deciding what to do but I am still leaning towards a combo of going to the special needs preschool 3 days a week, and the waldorf preschool 2 days a week.

Also, Mary, Nathan’s nurse, and I have been trying to figure out how to transition out of treating Nathan like a baby. Mary has been on my case for a while now that I treat him like a baby and as a result he is spoiled and immature. So together we have been trying to figure out ways to treat him differently. We are talking to him like we would a typical 3 year old. We are giving him choices like we would a typical 3 year old. I am doing my best to stop hugging and kissing him all day. We are trying to teach him discipline and to help him understand that sometimes he has to do things he doesn’t like. We have been working on new activities that he can engage in that are more age-appropriate, despite his limitations. It hasn’t been easy! But we are figuring it all out.

Finally, we conquered the biggest challenge of all – Nathan’s CME Medek home program. When we started it on Monday, it was a disaster. Nathan screamed bloody murder and refused to do the exercises. I had a total breakdown as I panicked, thinking Nathan would lose everything he’d gained in Toronto and we would have this awful battle twice a day every trying to get him to do his exercises. On Thursday, after 3 days of this, while Nathan was screaming bloody murder, I couldn’t take it any more and literally walked out the door and got in my car. I went to a meditation center to try and calm myself down. And during the meditation I had an idea. What if we tried doing his CME exercises with other kids around? So that night I took him to his cousin’s house and I did a few exercises there..and guess worked!!! He was so excited that he stood, balanced, pulled up, etc. So the next morning we did his morning session at the park…it went well. Then in the afternoon we kidnapped his cousin Gabriel and brought him to the house..again, Nathan did GREAT! So now we have our magic formula – he has to be in a different setting. He is sick of doing stuff in the confines of the house so we have to be creative about finding ways of getting him to enjoy the exercises. Tonight I did his session while his cousins were over and playing video games..he did very well! So now I am confident that we can maintain him until we get him over to Ramon in September.

Well that’s enough for now. Thanks for stopping by and reading my random musings!

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