back post then a long one

I know it’s been forever since I posted in here. First up I’m going to post something I wrote a couple months ago. I incorporated a most of it in a page I did last month.


5/30/09

Just doing a huge brain dump as Dianne calls them. So not sure how much sense any of his will make. Maybe if I get it out I can figure out how much I want to post on my much negelected blog.

It dawned on me the other day I am /have been, in mourning. In mourning for my beautiful baby boy. Knowing something was not quite right but trying so hard not to compare him to his rambunctious, talkative, imaginative older brother. Getting help for his developmental delays and then finding a program that worked so well for him. First the testing last fall and hearing PDD NOS, I know it was a starting point and had to convince my husband that yes this is the right track. He’s not just laid back and letting his brother do the talking. Then in February the follow up testing and the confirmation it was autism. From there I went into research mode, everything from what caused it to seeing what therapies were out there. Seeing if what we’re doing is enough, if we need to do more or add alternatives. Find what schools are out there and get recommendations. Mostly I see the huge progress he’s made since September. He laughs now, spontaneously, in the last week alone I’ve seen him do things he’s never done before, like Clap with out prompting, and make that fake cheesy smile when he sees me with the camera. You know the one, every kid does it until age 7 or 8. He’ll tackle me when I sit on the floor and get upset if I don’t kiss his hands before lights out at bed time. I can brush his teeth without protest, he holds my hand when we walk now, and can zip and unzip his jacket on his own. I can see him making connections. When we show him flash cards he can pick the one we describe with out saying the actual word. Like, “What do you wear on your head?” Instead of just saying hat. It's funny how much of this you take for granted that your child will do all these things and seeing him not being able to do them is heart wrenching.

Its things like this that make you realize how much you love your kids but how differently too. From day one my love for Q. has been fierce. I wanted to hold him tight and never let go. Monkey Boy I want to see fly, to see him set his imagination free and just be amazing. I want to push him and help him expand his horizons, to question and learn (no matter how much it drives me crazy some days) I want to see the mnchkin grow too but he always felt more grounded to me, gentler in some ways. A. is always dramatic and sometimes explosive, very changeable, but very fixated at the same time. He sees things one way based on how it was presented to him the first time, and doesn’t easily let that go. I feel like a mother bear sometimes with Q, I always have I want to protect him, keep him safe. I guess the mourning is a way of coming to terms with what I feel is my failure to do just that.

There was a meeting this week for the munchkin’s IEP. On his third birthday this fall he moves from the infants and toddlers program to the early intervention program in the school district. I wish they did something like this for all kids. I think somewhere down the road A will need one too. I worry that when he hits that awkward middle school age he’ll lose interest and get bored if he’s not given strong goals. See Q is taken care of, but I want to see Monkey Boy meet his potential as well.

Of course all the reading is starting to make me very mad. Especially with the medical establishment and their one size fits all attitude towards so many things. I’ve had some random conversations that have clarified some of the things rolling around in my head. In essence we’re all just ticking time bombs, genetically. We all have predispositions and the wrong environmental trigger can set it off. I saw a FAQ posted on the wall, in the exam room at our pediatrician’s office the other day. I had taken my older son in because of the fever he was running. It was about immunizations, one of the questions was Will immunizations overwhelm my child’s system. The explanation took most of the page but essentially it said no. I was so annoyed reading that because it is so wrong, so much apart of the one size fits all. Yes, immunizations can overwhelm a child’s system. I’m not saying I wouldn’t immunize my children if I could do it all again but I would certainly space everything out more and I would not use the combo shots. Hell, my kids had more shots in their first 9 months that I had in my first twelve years. And I’m of course mad that I ignored the whole immunization debate when I was pregnant the first time. I would have known that Hep B is unnecessary for an infant, in this country, unless there are other factors mostly dealing with the mother. I think what I’m pissed most about is that the states require all these shots by the time they are five. Why can’t they be spaced out even more, because you think people won’t get it done, that’s bull. I keep thinking if I had even considered family histories and thought about what was in the genetic soup that made my boys I would have known better than to just follow along. That’s my bad habit of taking the path of least resistance. I’ve started to hear things like the chicken pox vaccine may not work so well and that a booster is needed. I keep thinking why bother, as miserable as it was I’d almost rather my kids actually got chicken pox. Now I wouldn’t want them to get measles or mumps, I know I was glad I never had them but I question the safety of the MMR vaccine and would have preferred individual shots for those. I don’t know if it’s the metals they use in the vaccines or the combinations and quantity that overwhelmed his system and triggered Q. But I think the medical establishment really needs to start listening to parents and stop going off on wild goose chases in terms of research. To actually test vaccines thoroughly before having us inject them into our children. As my husband says in some ways they’re trying to play god and cure everything with out looking at the long term effects, with out knowing how our bodies work and react. I’ve been reading about the whole controversy with Dr Wakefield and the studies he did in the 90’s that first brought the MMR vaccine into question. They accuse him of saying children shouldn’t be vaccinated, when what he said was more studies needed to be made and in the meantime the MMR should not be used, but the individual vaccines for measles, mumps and rubella , that had been around for much longer should be. That there was a possible correlation between it and autism spectrum disorders but a much more extensive study was needed.

I’m mad at how narrow minded some doctors are about some of the alternative therapies. If a change in diet helps eliminate some of the behavioral problems, that then allows the more conventional OT and Speech Therapies work better, why not tell parents about them. I mean if a child is miserable because gas and intestinal problems, how are they to concentrate. If they aren’t getting all the nutrients they need because they’re bodies can’t process certain foods, how can they pay attention. One of the other moms, who has a son the in same program as the Munchkin, was doing her own research. She had started looking into getting a DAN doctor for her son. She’d asked for input from the doctor that had tested her son at Kennedy Krieger. The reply she got was so scathing about any alternative therapies, she started crying and questioning her decisions. All she wants is to help her son, just like I do, but the medical establishment sure doesn’t make it easy. Where as the therapists who have been working with our children were so much more supportive. They have seen the difference in behavior just changing to a GFCF diet can make. How much more receptive to therapies a child can be. And no it doesn’t work for every child, why should it we’re all different. Most of the websites I’ve looked at say try it for 3 months if you see a difference then you’ve eliminated one road block, if it doesn’t work at least you’re looking.

I get mad at myself too thinking about all the toxic things in just my home most especially cleaners, that I didn’t eliminate until Q was almost 8 months old. How I thought that recycling and not using processed food was enough for helping the environment, not really thinking about doing more. In the back of my mind I knew less toxins on this earth was better, healthier for my kids but again following the path of least resistance.

As you can see I’m all over the place. Guess its part of the process, I only wish it hadn’t affected my creativity. It’s not that I don’t have any ideas; it’s that I no longer seem to have the motivation to actually create them. I think that must be part of the process too. I’m sure one day the fountain will open up once more.