The thing that's most upsetting

The thing that is most upsetting me about Benjamin and his problems, is that they seem to be getting worse. All of the years of therapy and doctors and diagnoses and tests, there are still no answers, and the problems are getting worse. His odd behaviors are increasing, and well, this poop problem is out of control. I have pretty much givin up on finding a babysitter for him. It's not just anybody who will watch a 6 year old who messes his diaper every hour, just enough to smell up the room. Jason and I so desperatly need some time away, to ourselves, and no one will watch all three of my kids. My girlfriends can help during the day, which is great, but Jason and I need some time out and away from it all. We need it desperatly, and we need it soon.

It's actually getting harder to go places with Ben then it was when he was younger, and at least when he was younger, there was this hope that when he got older, it would be easier. He's nearly 7, and it's not easier. The stares are getting longer, and his behaviors less explainable. When a 3 or four year old is making noise or being out of control in a public place, it's kinda laughed at, now with Ben, I feel like I have to scream out, "HE HAS SPECIAL NEEDS!!!!!"

You would think after all this time I would be better at this. But I'm having a hard time. I have always thanked God that he didn't have health issues, and now, with his severe constipation, he has health issues. I don't know, I'm just feeling sad today. It's a hard life, I know I'm not the only one who deals with this, there are parents everywhere, more and more with the rise of Autism, but I don't know them. I just need a break, a vacation, some fun. That seems like an impossible dream, with our finantial problems to boot. Okay, now I'm just complaining. I'm done now.
Love,
Willow

Taking Ben off the drugs

So taking Ben off the Miralax has been intresting. The week before I did it, he had a great week at school, one of the best in a while, and then, it went downhill. Discouraging in the least. But all the parents on the Miralax board, would say that his behavior could come from detoxing fromt the toxic miralax. At first, he became very, very backed up, his tummy was huge and round and hard. But with some prune juice, Milk of magnesia, Pro-biotics everyday, and one gylcerine suppository, I seem to have cleared him out. He's still going everyday, but there not regular poops, there a little runny actually. So we tried taking the MOM, (milk of Magnisia) away, and then last night he just had a little hard stuff.

Anyway, his behavior over the last few weeks has been difficult at school and at home. He is super defient. He's doing things he knows he's not supposed to do, and sneaking around to do them. Then when he get's scolded he does this crying sad face thing, (Ben hardly cries unless he's hurt), where he reaches his arms up to you and say'd "Hug??" It's pretty impossible to resist. His Aid at school cought on to his game pretty quick, noteing how very smart he really is, and has refused to by into it, and well, he stopped. It's much harder for me and daddy to refuse his hugs, because well, he's Ben.

Jason's mom JoAnn is here for the first time in two years. She was here last night for dinner. I so wanted Ben to engage and be the cute sweet Ben I know he can be, but instead he just buzzed around the house from thing to thing, moaning and groaning and humming. Obsessing over and acting out a video that he recently found, "Elmo's world". Then freaking out when I turned it off to try to get him to join us for dinner, which he wouldn't. Sigh. It was hard. There is so much beauty and magic to Ben, so much to be seen and heard, but it's not always there, and usually hidden when there is someone new in the house.

Anyway, I'm going to try to get some video's for this site, once I figure it out. Ta Ta for now.
Love,
Willow

Miralax and other reports

So I recently learned that many, many kids have horrible reactions to Miralax. They even have a yahoo group dedicated to "Horrible reactions from Miralax" The drug that the ped’s have been telling me, “Oh just give him more and more till he goes poop”, and when I express concern that he won’t be able to go without it, they just say, “Well, he might just have to be on it for the rest of his life”. Okay, that’s bad enough. It’s a drug, and for kids like Ben, it’s most likely being absorbed into the blood stream via what’s referred to as a “leaky gut”. But they were having me give him twice the adult dose, and what was is prescribed for? A bowel obstruction, and severe constipation. If you google miralx, you will see that ever website says that it’s NOT, and DO NOT GIVE, in the case of either of those. Also, that it should not be given for more then two weeks, and that it should not be given to children. Anyway, I had a bad feeling about it from the get go. So, were trying other things, magnesium, prune juice, and so far were doing okay. There was about a week where he didn’t go hardly at all, just little bits of hard poop here and there. But yesterday he went a lot. He seems to have gotten the impacted stuff out, and is moving it through better. We’ll see how today goes.
I still really want to do homeopathy, and found a place that is going to be much less expensive, but even that, we can’t afford right now. Were desperately trying to catch up in some way with our finances, it seems really far away. Were probably going to go down to one car soon, to make it work better. Anyway, on a positive note, Benjamin said, “I love you Mommy” all on his own last night. He has said that before, but more like he was copying me saying it. Last night, he was definitely not copying me. Why would I say, “I love you Momma” to him. :-) Anyway, it was wonderful. He’s had a cold, and he’s been constipated all week, so although he seemed to have a really good breakthrough week last week in school and speech, this week has just been okay. Hopefully today is better. He slept well and emptied his Bowell’s, but he’s still boogery. Oh well, it’s Friday, another week is apon us. That’s all for now.

My Beautiful Benjamin

This is a Blog about Ben.

I am hoping to chronicle him a little. The main reason, is so when I go to the doctor, I can have little hint’s I have been writing, or typing, and I won’t forget. Secondly, I’m about the start a massive campaign to help fund some real help for Benjamin. I know I can’t afford it, but I also know he deserves it. Today, he was so tired, and spinning out of control, he literally fell into my arms, and in the saddest way, he said, Help me, and then he rubbed his eyes and said I’m tired. This was after me putting him on a time out for throwing a toy across the room. It had hit daddies guitar and made a loud boom. I was mad, but I know he can’t control himself when he gets like that. And when he looked at me with tears in his eyes, and said,” Help me, I’m tired” I hardly believed he said it. But he did, he really did. He doesn’t usually express mood or desire in that way, but that’s what he said. I don’t even know what to think of it really, except for it to further my drive to help him. He’s starting to be able to tell us more w hat’s wrong with him, which is amazing. Yesterday at the doctor, he lifted up his shirt and said Tummy Owwee. He’s constipated worse then ever, so backed up, and what’s there answer, more miralax, the miracle drug for constipation. Who cares if it makes him go for days on end and then not at all, and then days on end. So what if he has to be on it for the rest of his life. Ahhhhhhhhh!!!!!!!!!!! It just makes me so mad. There telling me I should just expect to have my six year old who still in diapers on Miralax for the rest of his life. Crap. Literally crap. I know there is someone out there who’s not so stupid. Problem is, they don ‘t take insurance.
Anyway, okay, I’m being positive. I wanted to start this blog not only to sh are a little about my Benjamin, but also to document any changes or differences, so I’ll have something to go back to. So I’m going to start with PRESENT LEVELS

PRESENT LEVELS- MARCH 13TH 2008 AGE 6.5

Eye Contact: I would say, (rough estimate) that his eye contact is difficult to get about 80% of the time. The other 20% is when he is actively engaged with me, or someone else, he is great at eye contact, and seems comfortable with it. But most of the time, it’s a struggle.

Gross Motor: He seems like he’s doing great in this area, but he is still wobbly, and not quite as coordiated as a typical kid is. He’s still kinda drunk looking.

Fine Motor: Still struggles quite a big with things like cutting, and writing, but he’s been making great progress. He just starting at least attempting to trace each letter of BEN, and saying each letter as he attempts to trace it, that is WONDERFUL! He is cutting, much better then the beggining of the year, but still very sloppily. Most of the time he holds the pencil or crayon correctly. He still mostly scribbles with wide long scribbles. But he will draw a face with eyes and nose and mouth, and ears and hair, but I think he’s been able to do that for years now.

Speech:His speech is still very Dysarthric, but getting clearer. Still most words are difficult to understand by your typical person, but I am understanding more and more. He’s doing a lot of three word combo’s latley, and were even hearing more sentances. The other day he was calling to the kitty to come in through the window and he said, “Come on, Come on”, and then when she made it, he looked at grandma and said, “Yeah he did it! Give me Five!” Two sentances right in a row, with the pronouns and everything. We were all very impressed with that. You still can’t really have a conversation with him. If you ask him “How was your day?” He will usually not answer. That’s more of a cognition thing, or an auditory processing problem then speech though. If you ask him, what color do you want, yellow or red, he will usually answer you his choice. Tonight, I asked him, do you want to read a story, or go right to bed, he asnwerd, “right to bed”. So basically, he is able to answer multiple choice questions, that are not too abstract. If I asked him, “What is your favorite color”, even though he knows all the colors, and can name them, he wouldn’t be able to tell me his favorite color. I don’t think anyway, he does amaze me sometimes. Sometimes he say’s hello and goodbye, but you usually really have to press him for it, and sometimes it’s just not worth it.
Acidemics: He definetly know’s his numbers 1-20, but he does seem to have a little trouble going from 19 to 20, as does Elijah. I think if I got him started he could get through the 20’s, but I’m not sure. He know’s all his colors, and shapes, the basic ones anyway, I think he has a bit of a hard time with Grey. He hasn’t shown much skill in reading, and he definetly has writing problems, but if he’s seen it before, and know’s what it says, he can usually recognize a word.

Attention: He can pay attention if your one on one with him with something he likes for probably a max of 15 minuets. But if he doesn’t really care for it, he won’t sit and do it. Sometimes at school liz will just busy him with other things, just so he’s not running around the room. He just has a really, really hard time staying still. Sometimes I think it’s because he’s in pain. Being still hurts more when your tummy is in pain. He is always moving, and needing to move, so that makes it really hard to sit still. He does better at school then home, but at home, he’s constantly moving. Sometimes, I can get him to sit to listen to a story, or watch a show, but not for very long. Constantly moving must be really tiring, and boring after a while, so that’s when he starts throwing stuff.