A little piece of heaven

The guys from the Australian Institute for the Achievement of Human Potential told us lots and lots of intense swinging is important for Nathan. It will help to stimulate his vestibular system, which will improve many things like balance and coordination.

Since it’s now pretty cold and hard to go use a swing outside, we decided – why not have a swing inside?

So we ordered a $20 swing online and bought a chain at Home Depot. My brother in law drilled a hole in an overhang in our therapy room and then hung the swing by some heavy duty chains. The result – Nathan can swing in the middle of the day regardless of the weather and even watch TV while swinging. Can’t beat that 🙂

So I thought I would share this idea as it can be great fun for both typical and special needs kids. And it’s one type of therapy that can help them greatly and that they can enjoy!

Here’s Nathan in our swing. As you can see, there’s equipment everywhere in our house. Oh well.

Today marks the end of an era. And as a tribute to this ending and new beginning I thought I’d talk about a little piece of heaven.

So many of my posts in the last few months have centered around Nathan’s disability. Today and as Xmas gets close I thought I should write about Nathan’s abilities.

What I’ve come to see with pristine clarity is that Nathan’s body may be broken but his soul soars. He is the gentlest, most loving, most giving, most forgiving, most charismatic, most pure soul I have ever encountered. And this is why I’ve called this blog “A little piece of heaven.” Becaues that’s what Nathan is – a little piece of heaven, a little piece of perfection.

And the more I let go of expectations and just go with the current of his love, the more I find myself enjoying him, the more happiness and peace I find in my heart. As I see how perfect he is, I realize his soul embodies what I’d imagine heaven to feel like.

And now that I recognize that I have a little piece of heaven in my house, I’ve decided it’s time to let go of stressing and worrying about Nathan. Why should I? He doesn’t need me to stress! And I surely don’t need it either. When I saw the doctor he said that my body is depleted mostly from stress, which is why I’ve been so sick and nonfunctional. I finally saw very clearly how foolish I’ve been. Worrying about someone who doesnt’ need to be worried over. It was the lesson my teacher tried to offer me a year and a half ago but I wasn’t ready to accept that lesson. I was determined to put humpty together again.

Now I know that humpty is perfect the way he is and as a new era rises my focus is going to be on loving and enjoying humpty dumpty. It’s time!

Another reason why this is the end of an era. Today we picked up Nathan’s Hart Walker. We now have EVERYTHING we need for Nathan. He’s had a 3 week intensive therapy, 2 shots of stem cells, osteopathy, Intensive sensory stimulation, HBOT, ABR. We have all the equipment we need. We’ve explored so many things, we’ve tried everything and we have a better understanding of what we need to do to help Nathan.

So the “research” era is over and the “Doing and enjoying” era will begin. For the next 6-12 months we are just going to DO. We are going to put all the programs into practice and give them time to work. Instead of looking for new things we are going to stick with who and what we’ve found and do our best to balance his therapies/stimulation with just relaxing and having fun.

I know we are on the right path now. We have the right people helping us. We have the right tools and equipment. And I am excited about what this new era will bring. Not because I hope it will bring external changes in his development or abilities. But because now I am at total peace with our path. I am at total peace with the knowledge that we will always help Nathan and give him as many opportunities as we can to improve his skills and abilities while celebrating and enjoying his soul. What more could anyone ask for?

Here are some photos of Nathan:After we picked up the Hart Walker we went to see friends and Nathan had a blast:

I still have some battles left to fight. I have to get a communication device for Nathan. I have to figure out what we’re going to do when he turns 3. I have to somehow fit a million things into the day.

But I can now face those battles with a sense of peace, knowing that the goal is not a desired outcome – that the purpose of the therapies is in the giving, not in the desired result. It’s a matter of letting to of expectations and desired outcomes and just see therapy as a way of interacting with nathan and giving him opportunities. And this view changes the feelign of the therapies and makes them feel more relaxed.

So thanks for sharing in my journey from the darkest of places to the simple awakening that I have a piece of heaven in my home and heart.

It ocurred to me today as I had Nathan in the Kidwalk that typical kids learn to walk by trail and error, they stand, step and fall thousands of time. WIth Nathan it’s different as he doesn’t need balance, but still, I love that I am “teaching him” to walk every time we go out on the kidwalk. It’s an experience I am enjoying and I love watching as he makes connections in his brain. Every day he seems to understand a little bit better how to step.

Today I braved the mall. Yes, I did it. I was scared and nervous but I figured it was time. We got a TON of stares. I can tell that very soon I am going to develop the ability to “insulate” myself. I realized that the only way to get through it is to block out everyone else and focus 100% on Nathan. So whether people stared or not, I didn’t even notice, it was like Nathan and I (and my mom and grandma, they came with me), existed in a bubble with no one else around us. I have a feeling this skill is going to become stronger and very useful as Nathan gets older.

Anyways, today I saw him initiate steps on his own. Before I would have to push it forward to encourage him to move his feet. But today, when he got excited and wanted to go somewhere, he would start stepping!

He’s not yet moving the walker on his own. His muscle tone is so messed up that I have to keep him slightly elevated so it’s easier for him to move his feet, and as a result, he doesn’t have enough surface area on the ground to really move it forward. But what he’s doing is, as he steps, I push the device forward so he’s getting an understanding that if he moves his feet, the device moves. With time I am sure he will be able to do it on his own.

The most important part – he LOVED being in the kidwalk today. I think with every day and every opportunity to practice he is understanding and enjoying the experience better. I think he loves being at peer level with other kids and he’s loving the sense of independence. I don’t know how to explain it, it’s this feeling I get when I see him that he understands that he’s in the position he should be – upright touching the floor, instead of high up in a chair or in a baby carrier or in someone’s arms. Also, he’s starting to realize that he can go when he wants to go. If I see him get excited and start moving his feet, I help himi step forward. Can you imagine the freedom this must give him? In the stroller or baby carrier, he has to go where we want to go when we want to go – he has no freedom to decide. Now he can start having some freedom and deciding where he wants to go and when. How amazing huh?

As for me – I LOVE this device. It’s nice not to have to carry him all the time. It’s nice to be able to plop him in there and know that he is benefitting and developing new skills. I think the wheelchair has become very obsolete in our house. Why take him in the wheelchair when I can take him in the walker? If I don’t want him to practice walking, I can just use the lift mechanism and raise him so he’s feet are not touching the floor. This way I can push him and we can walk quickly. It’s not as easy to push/navigate as a wheelchair, but I think it’s much better for Nathan. I push him for long distances, then lower him so he can practice stepping short distances, like 5 feet to the swing, etc. So instead of wasting time with him sitting in a chair where he’s not gaining anything, he can work on head control, feel like he’s near to the ground, and a myriad other wonderful things.

Finally, here are some videos and pictures so you can see for yourself:

THis is another reason I love the kidwalk. I can push him up to things and have him play with them. This is one of the first times in Nathan’s life that he can “play” with an object. His muscle tone in his arms is so bad that it’s hard for him to move his arms, reach, etc. But in this device he’s well supported so he can lift up his arms and play with things. I’ve been standing him up against toys, plants, anything that is at his level. He seems to really enjoy it.

Here are some other cute pics