Didn’t God see my white flag? Doesn’t he understand that I can’t possibly carry anymore? Can’t he see how much pain I’m in? Hasn’t he noticed how I’m buckling under the weight of all I carry now? Can’t he see how much I’m struggling? How little sanity I have left? My patience is gone, too. Can’t he tell I feel utterly alone? That I feel as if everything I touch falls to pieces. Can’t he hear me screaming for him? Why doesn’t he answer?
All I’ve ever wanted, ever since I can remember, was a family. The stereotypical American dream…a house, a husband, a cat and a dog, 2.5 kids. Granted I have .5 more kids and I traded the dog for 2 more cats than the stereotypical American dream but you get the point. Now that I have want I wanted, I don’t know if I was up for the challenge.
I’ve read the poems about being a parent to a child with “something more”. I’ve heard the euphemisms. It’s all crap. Complete and utter crap. I didn’t plan a trip to Italy and end up in Holland. I am the mother of a child with special needs. Technically, if there is something more complicated than special needs, that would probably fit better. So far Gavin’s laundry list of diagnoses are:
Sensory Integration Disorder
And now it has come to our attention that Gavin may also have Pica. Apparently he has been eating toilet paper and the stitching on his comforter. Last night he came downstairs and asked us if his gums were bleeding. I told him no and asked why they would be bleeding. He cheerfully informed me that he sometimes cuts his gums when he’s eating his blanket. So we had the food vs non-food conversation. During which I asked him why he would eat toilet paper and his blanket. He said because it tastes good and we don’t feed him enough so he eats these things.
Now I don’t owe anyone an explanation on this matter, however, I will offer one. First of all, we do feed Gavin enough. In reality he eats more than me, the nursing 28 year old grown woman. Also because of his Autism and various mental disabilities he does not possess the ability to self-regulate so we have to limit his access to food. We have tried in the past to allow Gavin to eat until he feels he is full. What ends up happening is he eats until he vomits. Then after he vomits, he tries to go back and eat some more. So we cannot allow him to attempt to self-regulate during meal times. We make sure that he at least gets all of the suggested values on the food pyramid everyday. So please, rest assured that Gavin is getting plenty to eat.
I checked his comforter last night to see which part of it and how much is missing. All of the “decorative” stitching that holds the center of the comforter together, is gone. He’s eaten it. The fact that he’s eating the toilet paper actually solves a mystery Rob and I have been pondering for a while, where does all of our toilet paper go. Now Gavin believes he’s been eating his comforter for 2 years, however, I know that the last time I washed it (maybe a week or so ago) all of the stitching was there. Just to give you an idea of Gavin’s mindset about this whole situation, while I was checking his comforter last night Gavin asked me if I would be replacing it. I told him no. Then I aksed, “Why would I?” His response, “Because this one is almost gone.” Yup, he expects us to help him continue this behavior. (Oy vay.)
Obviously it’s not a good thing that Gavin is eating non-food items. This is new territory for both Rob and myself so the first thing I did was call Patty. She said that contrary to what Gavin is claiming, she does not believe that we are not feeding him enough. She has seen his inability to self-regulate and as such trusts that we are feeding him plenty. She said that us not feeding him enough is an excuse. She doesn’t have a lot of experience with Pica so she suggested I call Dr. R and Dr. H and ask them for their thoughts. So I called both of them and left messages with their nurses. Dr. R said Pica is more of a physical, developmental disorder and we should call Dr. H. Then Dr. H’s nurse called back. He wants to see Gavin tomorrow (Tuesday) morning and then he will likely refer us for an x-ray. Dr. H wants to make sure that the string Gavin has eaten hasn’t formed a solid ball in his stomach because if it has and it tries to make it’s way through his system in one piece it will likely cause a bowel obstruction. And so that is where we are now. (By the way, it’s 8:30am on Tuesday now because I had to take a break last night when my laptop died.)
In 2 and 1/2 hours I will pack up Gavin and Emmett John. We will pick up Grandma G and head to Dr. H’s office. While we are there I will change Gavin’s name! (Yay!) Then our morning of ultra-fun, super cool doctor’s appointments and tests will begin. (That was sarcasm by the way.) I will update from my phone on Twitter while we are gone and if I get a chance I’ll post updates to the blog as well.
Prayers and positive thoughts would be much appreciated.