Wednesday, August 27, 2008

Wringing Kendal's Neck

I'm sure most of you moms out there have been tempted at some point to wring your child's neck. That has been my feelings for the last several days. Kendal has been having some behavioral issues that we are having a hard time dealing with. If you have any advice, please leave a comment. I am open to any suggestions.

Kendal has recently started slapping me in the face. Now anyone that knows me, knows that is not a behavior that I would put up with. I consider myself fairly strict with Kendal and have become more and more aggravated because I cannot control her as easily as I used too. Granted, probably some of this is just being a 2 year old and testing the waters, but I have questioned whether this behavior has been seen with other Angelman Syndrome kids. I know that a characteristic is swinging/flapping arms and didn't know if this had anything to do with Kendal's behavior.

She slapped me continuously and each time I would tell her no, slightly restrain her, explained that it hurt mommy, and showed her to love mommy by rubbing my cheek. As soon as I would let go she would again slap me. It was as if she had NO control over her arms - that they couldn't stop swigging. After talking with several people (thanks!! Doris, Shirley, and Donnetta) I have gotten some really great advice and will try the technique of immediately putting her down or getting away from her and not looking her in the face. Terry Jo (Visiting Scholar @ Vandi - AS expert) as advised me NOT to look at Kendal in the face when dealing with these issues. I guess it is because Kendal is so social, it will have a much greater impact to NOT look at her so she will know that I am not pleased and that the behavior is unacceptable.

James has not been submitted to this until tonight and he just his first dose of it. I will tell you that it is truly the most frustrating thing. I wonder how much of this behavior is out of frustration or anger on her part. Most kids her age will tell you whats wrong - Kendal, at this point, does not know how to express these emotions and I'm terrified that these behavioral issues will just get worse down the road.

Terry Jo called me this morning and discussed an additional option on testing for the Imprinting Defect as a mechanism that caused Kendal's AS. She informed me that there are only 5 labs in the world that do this specific test and she felt like it was something I needed to pursue. The physician that is heading up the research study is going to look over Kendal's reports and give us his 2 cents on what we should do. Terry Jo explained that because Kendal's methylation test showed abnormalities indicating AS, that we should be able to find those abnormalities through lab reports. The geneticist had basically told me that there is nothing else they can do and they cannot give me an exact mechanism that caused Kendal's AS. I am, however, more apt to listening to Terry Jo because Angelman Syndrome is her life and all she studies about. The geneticists, while very helpful, are not as familiar with AS because they are dealing with so many other genetic disorders and don't see AS very often.

Terry Jo should be getting back with me soon regarding her advice. Also waiting to hear back from Dr. Barnes (neurologist) on her EEG results. We also have an appointment Tuesday (9-2) afternoon to see a sleep specialist. Knowing Kendal, if we had a sleep study, she would do amazingly well and the doctors would look at me like I'm crazy. It certainly won't be the first time that has happened!!

3 comments:

Shirley said...

So I'm sitting here in tears. I've been trying to ward off panic attacks all day over going to the doctor tomorrow. I came to your website to read your latest post and what do I see as the quote of the week: Deuteronomy 31:6
Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you." What peace in those words and how true they are. Thank you Kerrie for allowing God to use your website and thank you GOD for comforting me and letting me know you will be with me tomorrow just the same as always.

Anonymous said...

Kerrie,
I know you've probably heard this already..but at two most kids act out in some way..hitting, biting,etc. because they do get so frustrated at not being able to express themselves like they want or need. I think you've gotten some great advice on putting her down and not looking her in the face to show your displeasure..that always seemed to work best for my kids as well. And trust me when I say ALL moms go thru periods of time where they just want to wring their kids' necks LOL And, whenever I talk to Shirley we always seem to be going thru it at the same time...looks like you and Kendal are on the same schedule lol Keep your chin up, you are doing a fantastic job!

Anonymous said...

PS
I love the new layout of your blog. It looks great!

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