MIA again

It seems that we stay busy most of the time. It's tiring, but we make it and I'm learning a lot. Were also getting ready to throw a little ABA in the mix, FINALLY!

Henry is making wonderful strides. He is counting to eleven now. He occasionally uses his words when he wants something instead of just going into a tantrum. It's such an accomplishment for us for that to happen. He now asks for "apple" when he wants juice and points to the correct PEC when he wants milk. Just today he said "cup" to tell me that his little sister had stolen his. They fight like cats and dogs, but at least there's something good coming out of those throw downs.

We also were finally able to order a pressure vest. Amazingly, I ordered it late afternoon and it was here within 3 days. I highly recommend Affordable Therapy Solutions to anyone who has children with particular needs. Nope, they aren't paying me to say that. I was just very impressed with them.

On another note, a discussion came up the other day that struck home with me. Well, not so much as discussion as a statement. Someone had mentioned that many times, warrior mamas come across as trying to recruit rather than trying to help. I totally agree with this statement, because I absolutely see it in myself. Just today I caught myself wanting to cry at the massive amounts of children that were pouring out of the immunization clinic, all crying and wiping their tears with one hand while holding cheap little choking hazards (stickers, not appropriate for a tiny baby) with the other. I don't want to push ANYONE not to vaccinate, but I want to make sure that every mother and father is educated on what can happen. When I try to say anything though, I know it comes off like I'm saying that "every child who gets a vaccination is going to have problems from it" and that's absolutely not what I mean at all. I'm not even 100% convinced if that is what happened in our family.

The only thing I'm sure of is that we went in for vaccinations and then landed in the Children's Hospital at Medical University of South Carolina because my son was having seizures and had several moments of complete unconsciousness and wasn't breathing in those moments. But you guys already know that.

The point I'm trying to make is that I think I've decided to take a step back from "warrior" mode at the moment and focus on us. Once we figure out what were doing and how we feel, then we can be a better help and advocate for others. Until then...not unless I'm asked. ;0)

How much can one kid take?

Where is the breaking point? When do things become too much? When am I doing more harm than good? 

These are all questions that I ask almost daily on our road trips to therapy. We are up to 4 days a week most weeks, 5 every other. Somehow I'm supposed to fit ABA therapy in too. I suppose, like a good mother would do, I'll find a place for it to fit in. When you break it up, our therapy doesn't even add up to much....a mere 6 hours a week at the most. It's the travel time, the waiting room time, the loading all three children up and hauling them around kicking and screaming time that makes me question my abilities. 

I have to learn to make time for all of my children, not just Henry. Let's face it, all of them are AFFECTED by autism, even if only one of them is diagnosed with it. I have a nine year old that loves animals. Why isn't she in some sort of club for that? I have a ten month old that loves....well, right now she loves most things. Why isn't she having playdates? 

In the next few weeks, I will be getting together with Henry's therapists to make a more set schedule. No more of these "work you in when we can" office politics. I will demand that we have a set time for therapy. I will demand that Henry's speech and OT be scheduled together in order to avoid travelling so many days in one week. These crazy schedules aren't good for him, my other children, or myself. If they can't accommodate us, I'm sure someone else can. 

Tonight, in the middle of the mother of all meltdowns I realized, THIS is the breaking point. Poor Henry sat in the floor and screamed, kicked, hyperventilated, and kicked some more. It wasn't a tantrum. He COULDN'T stop himself. Nothing would help him, he had to just get it out. As I held my baby there in my arms, in the floor and rocked him, I came to the conclusion that something has to give. We will not be stopping any therapies, but we will be doing a better job of coordinating our times. It's wearing my poor children out. 

Hopefully, in working out a new schedule, I can work on this blog a little more also. I realize it's been neglected from the get-go, but when it's blog time or family time...well, as scarce as it is, I'm going to choose family time over everything. :)

Cure OR Acceptance?

Yes, it is a hot topic among the community of us who have children affected by ASD. On one hand you have folks who have seen changes happen. A "cure" persay...something that made their children act, talk, react, and socialize like most other children out there. On the other hand, you have parents who are happy with what they have been given and say that there is no need for these cures.

I can see both sides of the fence. I'm just not sure where I stand on it. We did the gluten-free, casein-free diet for a while, but it was tough. We finally went off of the diet and Henry actually started doing better. So...I'm going to guess that gluten wasn't our issue.

I have looked into the biomedical research. It's scary. Needles and pricks and hyperbaric chambers. I'm just not sure I can put my sweet baby through all of that.

I've researched supplements. I may begin to use a few eventually. I have just yet to find a book to tell me about them all without the author plugging their own agenda.

As much as I would love for my son not to struggle with things in life, I just don't know that I can put all of my eggs in one basket to try to change what he is. I love him the way he is. Everything about him is awesome. So, for now I guess I'm on the side of the fence that is just looking for acceptance. Who on Earth knows where I'll be a month from now, but I'm sure that where ever it is and whatever we decide, that Henry will have the happiest of all lives.

Now....on to vacation. :)