Friday, June 27, 2008

Swimmer Boy

Signing the word Jump....


Preparing for take-off...


Going for it!

Ethan gets totally blissed out in the water, whether he's in a jacuzzi, back-yard baby pool, or the big pool in town. He shows no fear whatsoever, which is good and bad. I'm focusing mostly on the good; at the rate he's going, he'll be swimming under water this time next year. It really seems to be one of his strengths.

He and I visited mom and dad in Virginia last week for a little R & R. I took these pictures of Ethan swimming to Grandma Sarah. You'll not see her in any shots because I wanted to remain on speaking grounds with mom for the next few years!

On her way home from work one day, my mother passed by a daycare or preschool where she saw children Ethan's age outside playing. She was struck by how physically different they seemed when compared to Ethan. I guess when he's the only toddler you're ever around, you may not realize just how physically challenged he is; a few glimpses of a neurotypical child his age and you get the picture pretty fast. He has a really immature and unsteady gait and holds his right arm up high for balance. He cannot stay standing when the surface he's on becomes uneven, though he's getting better at it by the day. He cannot run, or jump, or gallop, or hop. Yet he's got this incredible strength in his limbs and is very acrobatic on the floor. He has been doing somersaults for over a year and is now working on a head stand. That type of activity must really feel good (it stimulates his vestibular system) because he can do it for several hours a day.

Which leads me to the current dilemma. How do you keep a tumbler with severe acid reflux from throwing up? He's in the throes of another flare-up and has been throwing up today.

I know our experience with it has been on the more extreme end (and rare), but I honestly think that living with acid reflux is much harder than being deaf.

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Rich and I are looking at apartments tomorrow and may even sign a lease. If so, we'd be moving this time next week, which is weird. Also, I'm done dealing with our schools here and refuse to sign the IEP, but I'm working on filing a complaint at the state level so that they will think a little bit harder about treating families and children the way we were treated.


15 comments:

Laurie said...

Ethan looks so happy in the pool! Maybe he will be a "water" boy. I'm sure the water is good exercise for him.

I, too, love the water and took swimming lessons for many years. It was the best way my mom could "channel" my energy.

To this day I love to swim. . . nothing excites me more than a pool of sparkling blue water! I take my ears off and swim to my heart's content in silence.

Eileen said...

Ethan looks so joyful in the water. You can tell he is loving every second of being there. They are great photos, he is getting so big. Cute as ever!

I am glad you are filing a complaint with the state. Treating people like that is so unacceptable. They really have no clue and that is so sad for other children.

Keep us updated about the move. I can't believe it could happen that fast, but I think it would be a good thing. Put all your energy into your new home and getting Ethan settled before school starts, seems like a great idea. Has he visited his new school?

Sending support and happy thoughts your way.

XOXOX

flutter said...

Look at him go! Look at YOU go.

Tom's mum said...

He looks like he's havng fun - maybe he could teach Tom how to enjoy water (he hates it).

This time last year Tom was very different to other toddlers in terms of mobility - sounds a lot like Ethan is now (unsteady gait and holding arm up). But now he is not that different and his brain (or body? who knows) seems to have sorted some things out. We have done lots of physio in the last 10 months and something seems to have clicked as he approaches his 4th bday so hang in there Ethan and Hetha :)

David said...

Ethan is so happy in the pool. He will thrive under your love and amazing guidance. You will have battles, but in the end you will prevail. Ethan is so lucky to have your commitment and great guidance in these issues.
Best luck in the new move to apartment, I know it will all work out.
Warmest,

David

Kyla said...

KayTar is the SAME WAY in the water. I think it gives our poorly balanced kids a way to work on their strength and be active without having to worry about pesky gravity. She is jumping into the water from the side (with floaties) and doing backwards free falls into the water. No fear.

Good luck with the move!

Mom to Toes said...

He is such an adorable boy, Heather. Looking at the pictures it is hard to believe he has delays at all. You are doing such an amazing job with him! Erin can't do a somersault without wrenching her neck and even attempting a headstand is impossible to fathom! He's a tough little thing!

That is nuts about the IEP. I am so glad you are taking a calm, yet firm stance on it. I am even more glad you are getting out of that school system and into an area that can provide Ethan with what he needs to succeed.

You and your husband are very special parents to uproot and move halfway across the state to make sure he gets the best education he can. He's a lucky little guy to have such advocates on his side!

Shiloh said...

Hetha,
I agree with Wendy. Ethan looks just like a normal little boy with no delays, enjoying the water. Heather, you are an amazing mother to him. You have been through so much with your precious little one. He is so lucky to have you. I love seeing the new pics of Ethan. He is ADORABLE!
Blessings to you!
Shiloh

jen said...

sister, all i could think was "he is getting SO big" and he's so gorgeous.

I am Trish Marie said...

We joke that Emmi's real problem is that she is actually a mermaid. She has no balance. Seriously. Not only due to the hearing issues, but also due to missing reflexes from brain damage. She has low tone from the metabolic disorder. Every effort to move or walk is labored. But put that kid in water!! Oh man! You should see her swim.

leahlefler said...

Water must give him such a sense of freedom and really let him show off his acrobatic skills! DOing sommersaults is pretty cool- Matt hasn't mastered that yet (he rolls around on the floor and thinks he's doing them, lol). Perhaps he'll play water polo when he gets older!

And Ethan has the most gorgeous hair of any boy I've ever seen!

Emily said...

Ethan looks adorable and so grown up in those pictures! Noah is deaf-blind and I have to say the reflux is what I'd rather do without. Vomiting is not fun. Hang in there!

Aliki2006 said...

First of all, those pictures are wonderful--he looks so very happy and filled with joy!

I don't have any advice about the tumbling and reflux--only to wish you all the luck in finding a happy medium. It sounds like the tumbling is really important for him.

Good luck with the apartment!

Beck said...

I know another mom who has a child with severe acid reflux and it is a HUGE deal. Her husband actually hired a part time housekeeper to help her out.

He's BEAUTIFUL! Look at his joyous face!

La La said...

OMG, he is DARLING!

I'm glad you are putting your foot down about the IEP.

I'm also glad you are pursuing writing a complaint. Advocacy is such important work.

Keep us updated on your move.