« We all need Fairy Godmothers | Main | I'm sorry »



Feed You can follow this conversation by subscribing to the comment feed for this post.

Awesome post - words we all should live by.

So beautifully put.

I don't know what "normal" is, but I had a lot of these same thoughts and concerns when I was filling out Xander's form. I think it all boils down to what we are learning: we need to accept them for who they are, not what we thought they would be. On a somewhat lighter note, I don't fear for one over the other when Elias is over; they are equally selfish and combative. ;) Not what we want, I know, but I'm learning to adapt and they will learn better social skills...eventually.

We all carry some version of Elias' blue canes...so very true and wise. I will keep that in my mind this school year for myself and for my first graders.

Reading this post took my breath away! I want these very same things for my son, but never quite knew how to put it.

So glad I found your blog! I too have a 25 week preemie who had many of the same issues that Elias had! Jackson was 1lb 15oz when he was born and is currently 14 months and doing well but we are of course struggling with the development as he too had a serious brain injury after birth. Your last post truly inspired me. Thank you for writing!

such a lovely post. thank you.

As Jimmie Heuga said to me, "everyone has something. some of us just have it displayed for everyone to see."

Keep writing!!! We all need your words.
You may know that I take care of an autistic child every afternoon and just last week we had an incident that reminded me so much of what you write. We were out throwing a ball for their 1 year old lab (Jake and me) and one time the dog did not see where it had gone, so I went to retrieve it and threw it back to Jake so that he could hit it with the tennis racquet. He did not look, understand, grasp, etc. that his dog also was going for the ball and Jake ended up hitting this darling dog, Ike, in the mouth with the tennis racquet. Jake, was of course upset but didn't know how to deal with it. He kept saying to me - "you tell him I'm sorry"- this is an 11 year old. He could not understand how to deal with what he had done. So I totally understand some of your issues. There are so many fine lines in these children's brains. Elias has come so far and I know he still has many roads to travel but he has the best parents ever to help him navigate this bumpy road.

Thanks again for another beautiful post. Just a few thoughts.. I know you aren't looking for another "professional" in Elias' life, but have you considered a Behavior Analyst? Your word about wanting him to learn about consequences and the difference between right and wrong and hurting another child with his hands or canes made me think of Behavior Analysts. That's what they do.. they shape behaviors. They increase desirable ones like talking and decrease the less desirable ones like smacking someone with your cane. The website www.bacb.org has a list of board certified people by state. A good one will teach you a few strategies and techniques you can use in your daily life that will help Elias learn other ways to react besides with aggression. Like I said.. just a thought to consider. His school might also offer behavior based services, but I'd insist on only a "positive reinforcement" based approach from anyone. Best of luck to you and Elias as he starts his next year of school. I know the IEP process is stressful for parents, but he's always grown and thrived, and I know this year will be the same.

Thanks all for reading, commenting, and understanding. It always helps.

Sara, thanks for taking a moment to introduce yourself and Jackson, glad you found us:)

Emily, Nick and I had talked about this in the past and revisited the conversation last night after reading your comment and I do think we will look into this for Elias once we get a handle on his new school routine. I checked out the website and there is one Behavior Analyst in Anchorage, so hopefully hes a good one and not overbooked. But yes, giving him options besides aggression would be huge b/c I'm always surprised by his physical reactions to frustration or anger or whatever it is, as its not modeled for him in the home but lately he seems so quick to squeeze or push or hit.

Noel, thank you for sharing this story. I can relate as i am always so curious about Elias's brain and have to remind myself that yes it may be damaged but its also plastic not static.

Faye, thanks as always for being there for Elias and understanding that there really is no normal.

Remember when your worst fear was that Elias might have CP? Obviously the CP turned out to be not the worst thing ever, or maybe it is, but you've just accepted it. We're all learning, and accepting, as we go along.

I think, I dig a gold mine :), your blog will help me a lot for my baby boy...I've read and learn a lot. Keep it up and more power. Thanks.

From the Philippines,
ChooseYourOwnAdventureBooks.org for Kids, Adults and Teachers

DiVaughn, yes I remember, and now the CP seems so much easier to live with then his social/emotional communication stuff so yes we are all learning and accepting as we go.

Thank you Imee!!!

The comments to this entry are closed.

Become a Fan