A good portion of the people at the meeting signed up for it and hopefully they will share it with others and the word will spread and it will get used. I think it will be a good thing for parents to be able to connect with each other, and for an on-line forum to exist in which those in education and other professions that help those with special needs can be in touch with us also. I have encouraged the Director of Special Education to share this group with teachers so that they can pass it on to the parents of their students.
Here is what the home page of the group says:
The families and caregivers of children with special needs face an often
overwhelming journey as they search for assistance, support, and services. Many
of us who have been on this journey for a while wish to share information and
experiences. This is a group consisting of families, professionals, and other
interested community members in XXXXXX County, Virginia, and the surrounding
area. It is our hope that the information, discussion, and ideas presented on
this group will assist members as they complete their own journey of finding
appropriate supports and services for the individuals with special needs that
they serve or care for.
As of late yesterday afternoon, our region of Virginia no longer has Early Intervention Services being provided to children from birth up to age 3. I think this is unfortunate, but I am not surprised. I have a hunch that due to tough economic times lack of funding is going to grow into a much bigger problem for services than it is already.
I think it is more important than ever for parents to know that government services are not the only means of helping their children. Don't get me wrong here, I WANT children to get the help that they need. When the help isn't there though in avenues that it has been available in the past, parents need to make some decisions about where they are going to put their energy. Will it be into fighting bureaucracies to get them to pay for services or will they work directly towards getting the help for their children?
There isn't a lot out there right now in the form of private help for our children. When there is private help it's expensive, and the question often seems to get asked of us, "why aren't you using your county's services?" It gets frustrating.
What do you think? Is anyone else seeing any problems because of the lack of money in their children's schools or programs? Do you think it will get better any time soon? Will your insurance cover services that your local or state government cannot or will not pay for anymore? Will your insurance pay for services you obtain privately when you choose not to use the services that your county currently provides?
10 comments:
I think Parent's also have to take some responsibility in educating their children - NT or with a dx. It's amazing how many won't and assume someone will do it for them.
Doesn't work that way and those of us that have done it, tend to get those services the other's think they are owed. We've fought for them and the school's know we'll continue to fight for them and work with the system for the kids and the school.
People won't help you, if you won't help yourself.
I have been on and off of autism blogs and chat sites. I find both annoying at times. I'm down to about 4 autism blogs and am staying away from autism bb's.
Be careful you don't wade in too deep... I did and found I was spending more time and energy dealing with other people and their issues, than us and ours.
S.
I hear you and agree with you S! Forgive me for not being able to figure it out, but what are "autism bb's"?
I try to be very careful with how much I am involved going to meetings, etc. I'm finding that if I go to more than one or two per month it's too much.
Here I am typing and Samuel is downstairs having a fit! His helper is here, thank God, but even so I need to run..
Bulletin Boards.
The one I was on was the bbbautism one... I don't even know if it exists anymore.
S
I applaud you efforts and hope the very best for your group. The title is a bit misleading and overly simplistic. “Navigating the Maze”. The maze isn’t two dimensional. It isn’t three dimensional. The maze is four dimensional, dynamic, and inconsistent.
You need to be in the right maze(s) at the right time(s) in order to advance to the next maze(s). What maze(s) are you willing to search? Which maze(s) only lead to other maze(s) and what maze(s) have no exists? Which maze(s) do you believe have an exit? Previous explorers may tell you where the exit to the maze is but it is no longer there.
The only constant is that once you enter the maze, you can’t get out of it.
We were living in Richmond, VA when my son's issues first began to manifest themselves. At the time (circa 2003) we were referred to the early intervention program by our pediatrician. I recall going there and having a terribly frustrating conversation with some kind of "specialist" who with a straight face explained that by law they were required to provide such-and-such services and that because they were out of funds, they would not be doing so. I distinctly recall that right after this circular explanation he had the nerve to ask us if we were willing to sign a form waiving our right to services. IT WAS BIZARRE.
In the end, we qualified for speech services but because there was a sliding scale we would have paid $128 per session. In addition, we never saw the same speech therapist. After 3 sessions, I came to my senses and sought out private services through the "parent underground." (We ended up with a terrific speech therapist who came to our home 2x weekly and charged $45 per session. We've never had insurance coverage for any of our autism services.)
We've moved twice since then; first to TX (that was a special education DISASTER,) and then to CA where we are now. I often laugh when other parents out here complain about the services that we get both through the state and the school district. We have a TERRIFIC school program that was developed by Dr. Mark Sundberg (he's a bit of a celebrity in the autism world with regard to teaching language to kids with autism) and we've seen tremendous change in our son since enrolling here. The school runs parent training classes once a month for issues ranging from potty training, language training at home, and all sorts of behavioral issues.
In addition, CA has a Regional Center system where the state is broken up into regions that are serviced by these centers. The Regional Center that serves us provides us with a small amount of respite care (i.e. reimbursement for a few hours of child care each month), and a variety of other programs including info on special camps, classes, group homes, social skills, and behaviorist services.
Nothing is perfect and I'm sure we would benefit from services that we don't get but I am so thankful for what we receive. And, this is going to sound incredibly judgmental (forgive me for those who don't share this perspective) we are quite certain that our family's decision to have one at-home parent has played a HUGE part in our son's development. I never imagined I'd be a stay-at-home parent but because of my kid's issues, I cannot imagine it any other way.
Don't know if this is responsive to your post but boy it sure feels good to unload sometimes, doesn't it?!!
keep up your hard work!
"Will it be into fighting bureaucracies to get them to pay for services or will they work directly towards getting the help for their children?"
Tough to hear. But true.
Chuck it's true it's a maze and if you're smart you just keep moving along until you get those supports/services that fit you and yours not me and mine... I find it amazing how many people think the maze comes to an end with a defined exit.
Sorry, life doesn't work that way... with or without a dx.
I remember not even a year ago we (school and I) were debating whether or not we were going to teach my eldest French. Starts here at Gr 4. Yesterday he got 18/20 on test #3... he was upset... see... he got perfect on the first 2...
I look at those initial dx's now and wonder why I was ever worried about how life would turn out. Oh, it's not perfect.... but... I'm not complaining either.
S
Carolyn - Nice to hear from you! I haven't "visited" you in a while!
I like your expression "parent underground"!
Are your service in CA at all affected by the budget problems out there?
My sister in law in NY always talks about how good the services are up there.. but who can afford to live up there with the high taxes and who can get a job up there?!
Things are crazy, and I have a feeling the wild ride is just beginning! Can anyone else relate?
LAA,
Sadly, things are being impacted. Up until this year our student:teacher ratio was always 2:1 and the classroom teacher (as opposed to the aides) was not included in that ratio. They've changed that this year ... not a huge change but it is surely just the beginning.
I've also been hearing tales of parents' requests for individual aides being denied. Of course, since I'm not a party to the IEPs it's hard to know if parents' requests were reasonable but I know that the stingy-ness with aides is a relatively new issue here.
The funny thing about CA is that the school districts vary soooo much from town to town. We had the great fortune of being relocated here right at the peak of the real estate bubble. (It's been GREAT fun watching our exorbitantly priced real estate plummet in value.) We would have preferred to live in the next town over but because their special ed program was notoriously awful we opted to tough it out and live here. Of course, our town is more expensive ... might be something to that old expression about getting what you pay for!!!
As long as I'm ranting a bit, I have to say the one thing that drives my blood pressure off the charts is the idea that they'll cut special ed services before they even consider cutting some of the "nice-to-have" programming for typical kids. (For example, our high schools out here offer classes in Mandarin, Japanese, French, Spanish, German and Pig Latin! Sure that's nice to have but it's not nearly as important as speech therapists or behaviorists for kids who are going to struggle for the rest of their lives!) Ok, enough ... it is the holiday season after all!
Have a great Christmas and keep up your great mothering!
Thanks for your comments Carolyn! I love talking with other parents about this stuff and wish that there were more opportunities to do so. Hmm.. maybe an opportunity for another yahoo group?
My son never had his own aid while in school; while in the inclusion setting he shared an aid with another boy. His aid was wonderful, but I did worry that Samuel became too dependent upon her. I also think too much verbal prompting was being used for him.
As I think I posted when I made the decision to take Samuel out of school, I credit his former school for trying, I really do. I just don't see that the conventional classroom will ever be the optimal learning environment for him. Heck, I was bored silly in school and my husband didn't take to it very well either so how on earth can I expect Samuel to?
Many parents want their children, more than anything, to be able to function in a classroom setting just like NT kids. I want Samuel to learn, to be able to read and write, but I'm not worried about him being able to function in school as it exists nowadays. I'm more concerned that he learns how to function in life in a way that is meaningful to him.
Oh good grief, this comment is getting entirely too long. I better just do a separate post!
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