Justice and Tantrums

We haven’t seen our ECI coordinator in a few weeks so it was very nice to catch her up on everything that Eli has been up to. She observed first hand his little tantrums- you know, the ones that we were told he couldn’t possibly be throwing because he didn’t want to do something- he’s not old enough to do that. LOL I think the 2’s are gonna be real special.

Eli is so clever and stubborn. When he doesn’t want to do something he will pitch an all out fit- headbutting, screaming, throwing himself down on the floor, crying. Yesterday he cried for 15 minutes because I wanted him to hold his own bottle.

It doesn’t help that he is recovering from a virus. He has felt so puny for about a week now so he has done little to no OT at home (OT this afternoon should be super fun). All he wanted was to snuggle and be held- and who could blame him when he doesn’t feel well?

Anyway, our coordinator said this was definitely a behavior issue- the kid knows what he is doing and gave us some tips to try and redirect him. Mama’s any tips? I’ve tried just letting him CIO when he doesn’t get his way but the kid will cry for an hour with no end in sight. Our coordinator suggested siging “stop” and then directly asking him to do whatever you would like him to do instead. So far it hasn’t worked, but I don’t think he understands “stop” yet- once that comes then maybe. We will definitely keep trying that method.

Like I said, the 2’s are going to be real special.

36 more days of school and feeling overwhelmed with all that needs to be done. Really with all that is going on in the world right now- Boston, earthquakes…down to our every day problems. We live in such a broken world and I think we were all reminded of that yesterday.
I haven’t written much about Ethan Saylor, but he has really been on my heart lately. The whole issue surrounding his death is absolutely tragic and there are no words I can fathom that would comfort his family.
Ethan’s Story
I know many parents in the Ds community are all thinking the same thing- that could have been my child.
There are petitions, threads, blogs, and organizations all fighting for an investagation that will hopefully bring justice for Ethan and his family. There is a shift in our community- from advocacy to activisim. Advocacy is no longer enough- we want equality and justice.
Many in the Ds community are looking to organizations that represent our children and families- like the National Down Syndrome Congress. Yesterday the NDSC really stepped in it- they suggested their posting members were being zealots- too fierce in their statements and demands for justice in this situation. Ethan lost his life 3 months ago and still we know very little about what is being done as a result of the officers negligence.
“What makes you think the DOJ is not taking action? The wheels of justice are painstakingly slow. We lose credibility the moment we act as zealots advocating for anything. All actions must be level-headed and well planned. What we need you all to do is buy a sympathy care and send it to Ethan’s mom. Let her know you signed the petition and let her know that Ethan will not be forgotten.”- NDSC

The NDSC is claiming their facebook page was hacked and that the statement does not represent how they feel, but the damage has already been done.
This is a sensitive subject but it brings up so many feelings and doubts about this world that we are preparing for our Eli. For me, I feel like the best thing any of us can do is pray, sign the petition and find change in our hearts. Raise our children up to know that being different is ok, that love is most important and that justice matters- family, community, our moral standing matters.

Ok, so this post got way more deep than I had anticipated…I guess I had more to say than I thought.
Let’s all be stubborn like Eli- stand up for what’s right with as fierce a tantrum as this little boy can throw (which is pretty impressive in my opinion).


5 Replies to “Justice and Tantrums”

  1. Call me crazy, but I think Eli might just be like someone I know. Someone who stands her ground, is stubborn, doesn’t take no for an answer and continues on until she gets what she wants… His Mommy. 🙂 While it’s frustrating right now, it can be a wonderful quality to have later in life. I know it’s helped you tremendously when it comes to Eli’s care and well being. 🙂 Just sayin’

    Love ya!

  2. Pretty much! Good luck with that…. LOL 🙂 Seriously, that same stubbornness will also seen as being determined, not giving up, etc which will be wonderful in so many circumstances…..so all in all, I say it’s great thing! Although I am sure for the next few years it will also result in you wanting to pull your hair out. 🙂

  3. I’m ready to start a zealous campaign against any supposedly respected DS organization that is NOT zealously or at least obviously opposed to the inaction. NOT doing anything speaks volumes

    As does NOT mentioning the stark reality that prenatal testing may lead to abortion — another stance of the NDSS opposed to the dedication & passion of its own participation in a collaborative effort between all interested parties to produce the lettercase diagnosis & DS pregnancy booklet

    As does REMOVING Dr Skotko from the NDSS board without any public transparency or discussion or feedback with him as it happened

    NDSS has a lot to answer for before I pay my dues again.

    We have more zealot campaigns that haven’t even started. Good for us and tweet tweet the Internet and Facebook DO matter. Hello

    Great post and one behavioral technique is calmly restate the request every minute ignoring the protests. Or maybe its after the protest settles but I’d sooth a protestor that was under four for sure. They can’t handle their emotions.

    But I didn’t see the sad protest until three and a half–he’s very very as advanced emotionally and able to express it too; sorry for ya to go thru it early for DS but its a GOOD thing. Typical kids do this a lot some starting very early like this but he’s still early for sure there too I am fairly certain

    You have an emotional soul; great– maybe a bit like who hmmm HIS AMAzING parents huh? Ask your parents for tips I think it will sound very familiar to them too.

  4. And yeah I do agree with releasing info about not giving such a hard time to people who do not share your opinion (advice the Ndss needs itself and obviously wider diversity of views on its own board but…) and be tolerant and polite to say people who say their son attends a school for children with DS. After the target ad people were up in arms that the article mentioned that school.

    Please!!! Issue tolerance press releases then. Not now.

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