Monday, December 28, 2009

Christmas

We decided to take a last-minute trip to Tahoe for the holiday. We found a beautiful house that had all the comforts of home; minus the tree, of course. B was amazed at the snow which stood two feet deep on all parts of the property. He liked it until it went inside his ill-equipped rain boots, soaking both pairs of socks he wore and making him done, done, done with the snow. RIGHT.THEN!
I usually love renting homes in beautiful places like this, but for some reason I just could not get myself into the groove of this one, no matter how lovely and comfortable it was. I couldn't relax. I didn't sleep well. I didn't sit and read my book as planned. It was as though three days came and went in a flash that left me only with the rushed feeling of having to pack up the car and come home to mounds and mounds of laundry. I'm not quite sure what my deal was, but I am happy that at least B keeps saying he had a great time at the 'vacation house.'
M has been a bit tough this past week, and I am certain that played the largest part in my apathy toward our getaway. He has been physically hurting us several to many times a day. The other half received three cuts on his face during those three days, and I am marked with tiny fingernail-shaped scabs on my hands and wrists. He has become a master of using his nails to pinch and hurt...the same nails that scratch on walls and won't allow themselves to be cut more than two at one sitting. So needless to say, they are jagged and can really hurt. But the cuts really don't hurt more than our feelings do. How can your own child lash out at you continuously like that? Doesn't he love us? Well, the answer is, of course he does. We realize that he is beyond frustrated at not being able to communicate his needs or how he is feeling and it's human nature to lash out at those you are closest to. But nonetheless, when I see the clenched jaw and hear the.noise I can't help but flinch and try to run away. It is also human nature to not want to be hurt by someone, even if that someone is your beloved six-year-old child.
On the plus side, however, we were really pleased with how much he is trying to talk to us since school break began. You can really tell he is making desperate attempts to find words to tell us what he wants. Another plus that at first seemed like a negative was that we believe he was really and truly excited about the prospect of Santa Claus visiting us and leaving presents. He has been having great difficulty calming his body to go to sleep lately, but once he finally does he is a heavy sleeper who will sleep until 9 am if allowed. On Christmas Eve we had an even more difficult than usual time getting him to bed, and once he finally did he was then awake and wandering at 4:30 am, and then up for good at 7 am. I think he knew what was up and that made me feel a bit reassured.
I also am coming to the conclusion that M is suffering from gut pain. His poor belly is so distended and on days when he seems to be more irritable than normal, his belly can be almost rock-hard in spots. Remember when I mentioned PANDAS and the strep titer? Well, we ran a whole slew of tests and found that his strep titers were actually normal. This was surprising since he very clearly responds well to antibiotics. The doctor was hesitant to prescribe more of them, but felt we needed to do another trial to see if we got another good response. We just completed two weeks and though the tantrums and aggression were not as under control as they were in November, his teachers definitely reported that he was more 'on.' Another interesting thing to note was that when not on antibiotics, he was/is having potty accidents. It is incredibly frustrating. Fortunately for us, he has not defecated in his pants in over two years (knocking on wood) and only urinated. But despite having us put him on the potty over and over, he'll just pee his pants and sit in it as though he does not even notice or care. It's bizarre.
The other test we ran also showed concern with his gut. M has been supplemented with vitamins like zinc, magnesium, calcium, etc. for two years. Oddly, these were all the things that were out of range, low, on the blood tests. He is also quite low on iron, which we just began supplementing yesterday. What does this tell us? It tells us that for some reason he is not absorbing nutrients properly. There are theories about children with autism having a condition called 'autistic enterocolitis.' This term was coined by the controversial Dr. Andrew Wakefield of Thoughtful House where M was seen until we recently decided to find a local biomedical doctor. There are many people who are in disagreement about this conditions existence. I, however, have met way too many people who have children on the spectrum with similar digestive problems to dismiss this as a very real possibility. So I have contacted Thoughtful House to begin the process of seeing Dr. Arthur Krigsman who is considered the best pediatric gastroenterologist in the autism field. I have no idea when we will get back to Austin to see Dr. Krigsman, but I am hopeful that he will find something that is treatable to help get M back on track.
My other plan of attack is to once and for all build up my kahunas to finally pull M out of this awful school. I just canNOT let the teacher saying to me 'Maybe this is just who M is' go and I realize that these people are only continuing to further damage my child. Might sound extreme, but I fully believe that they are. Once I figure out the legalities of it all (do I have to register as a homeschooler, etc.) I will withdraw him. I am very hopeful my experiment will prove beneficial.

This was an extremely rambling post, and for those of you who stuck with it, thanks!
Lots on my mind, I suppose, and I just needed to spew it forth here :)

5 comments:

jewils said...

You're a great mom and doing the best for your boys. Just had to say it. You're often on my mind. Hang in there sister.

redheadmomma said...

thanks for updating us...sounds like you're dealing with a lot, but I bet you'll feel so much better once you can figure out the homeschooling. Talk about a weight off your shoulders. Take care of yourself! :)

Hetha said...

Hey Mama Deb,

I found you on Hopeful Parents recently, you left a very nice comment on a post I wrote about my 4 year old son Ethan. He was diagnosed with autism last month.

My husband and I have read your blog with great interest and we both marvel at how similar our lives sound in so many ways. There are numerous things you've written in your posts that we've literally said to one another over the past 6 weeks. It's so comforting to find someone out there who can truly relate. I especially feel that statement "I used to be fun"...that's a killer.

Ethan has had GERD since birth and has been on prevacid for over 3 years now. I've been so disappointed in the mainstream GI docs at our children's hospital (rate #3 in the nation) that I started taking Ethan to a DAN doc over a year ago. We've been doing the gfcf lifestyle and have been using enzymes, probiotics, etc. etc. I think it has helped his autism symptoms a great deal, but we're still needing to keep him on prevacid and that just sucks. I've been really curious about Thoughtful House and would love to make a trip down there with Ethan one of these days. I hope they can help your M.

Are you on the yahoo group gfcf kids? They are always discussing biomed stuff and there are some really knowledgeable folks on there.

We're in Cincinnati, Ohio btw.

Keep up the hard work, you are an inspiration to so many.

-Heather

Mandy said...

Deb, All I can say is that I love you and am so proud of you!! You write with such emotion that it leaves me feeling so attached to you!! You're such a wonderful mom and your boys are so blessed to have you!!!

Mama Deb said...

Thank you, all, for your continued support and words of encouragement. It means so very much to me. Happy New Year to all of you.

Oh...and SUCK IT, 2009!! :)

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