My Own Questions

I have been reading a few (read "way too many") blogs written by moms of kiddos with special needs this week. I found one blog by a woman who mixes a good deal of humor with honesty and struggle so I checked out her blogroll of similar blogs. Most of the other blogs did not contain the humor element which to me is pretty critical in avoiding bitterness or depression. I have to laugh, even if it may be a bit of dark humor. The beginning of the school year, an annual neurology appointment and reading too much online has brought a lot of questions to the surface. Here are some questions I need to be praying through and if you are of the praying variety, you are welcome to pray along with me.

When Should I Be a Squeaky Wheel?
One thing these blogs certainly pointed out was the lengths some of these moms will go to in order to make things right for their kids. Having worked in education for several years and being a peace-lover, I am slow to speak up when sometimes I should. Last year, Isaiah's bus driver, bus assistant and two teachers' assistants all asked to be placed with him for this school year. I was majorly touched by this because while my boy is a cutie, he is also a handful. None of those requests were honored by the school district or transportation so we are starting from square one with completely new people in his life. While I am more than happy with the staff in his classroom, I just wonder why none of those requests could have been granted to provide a little boy who can't communicate some consistency in his school life. What's done is done, but should I squeak?

What Do I Think About Main-Streaming?
The school district originally wanted to put Isaiah in a mainstream classroom with a teacher not trained in special needs and with all neurotypical kids this year. I did squeak then and at the last minute a different option came available for him. Now he is in a class with kids who have communication issues, but he is the only one with the motor issues. Last year's class was all immobile, but I thought that is where he should be to get the most attention. The special needs blogging mommas would not agree with me. Actually, one of them might even call me a segregationist for wanting him not to be mainstreamed. It already seems good for him to be with kids who are mobile and cognitively more advanced than him this year, but to what extent do we push that in the future?

Why Do High Schoolers Have to Go to School So Early?
Not really a life changing question and completely off point, but one that just came to mind as I watched a high schooler dragging himself off the bus and into his house across the street just now. These poor kids have to get on the bus at 6:00 a.m.

Do Supplements, Organic Foods, Fish Oils, Milk-Free Diets Work?
There is way too much information on diet fixes for special needs' kids. How do we know what works and what to invest in because we could spend hundreds on supplements and specialty diets? How do you balance Isaiah's increased need for calcium and Vitamin D with a milk-free diet and how would we really know if it was working? This is part of why I am reading these other blogs just to see if I can get some first hand knowledge of what may be working.

When Is Enough Enough on Testing?
Isaiah was supposed to get a spinal tap last summer to rule out the possibility of the one possible cause of his issues that is treatable. We were having it performed in conjunction with a surgery as he struggles when he comes out of anesthesia and we end up in the ICU each time. The office forgot to get it pre-authorized even though I double-checked with them and was told they had so we ended up with the surgery, but no spinal tap that day. We did, however, end up back in the ICU and not really wanting to put him under again any time soon. The possibility of this condition and the spinal tap was discussed again yesterday. Our neurologist and we feel like Isaiah's issues can be explained pretty easily by a traumatic pregnancy, delivery and first 18 months of life, but there is this little voice in all of our heads saying "there may be a treatable option out there." Whether to get the spinal tap may seem like a no brainer, but being 90% sure that we won't find anything makes it hard to put him through this all again.

If a Tree Falls in the Forest....Just Kidding

How Do We Know What to Invest In and What Works?
There are always new ways to spend large amounts of money when you parent a child with special needs. Currently we are considering a system that is worn on the body and helps give a child stability and a proper gait when walking. It is a bunch of velcro and spandex basically, but it is $500. When he has trialed it at PT, he walks beautifully so I think we will give it a try, but it's always hard to make these $$$$ decisions. We also pay for therapeutic horsemanship out of pocket. Therapeutic horsemanship has a major cool factor to it and Isaiah LOVES it, but it's hard to measure its effectiveness. Would money be better spent elsewhere?

Should I Stop Reading Strangers' Blogs?
It does help to read about other people going through similar circumstances. It feels good to read other writers expressing some of the same thoughts and questions I have had that I wouldn't really want to share, but is this truly helpful?