Being alive is a lesson

I just read the entries in this blog: http://lucyladybug.blogspot.com/ What a beautiful gift of writing this mother has, and I also know someone well who this child touched. This family has touched many lives with their story of their little girl that has passed away, yet blessed so many hearts.

Our children are alive and healthy at this time. We need to always be grateful for that and to just take each day one at a time, learning all we can and doing our best, and enjoying the moments as they come.[ad#Google Adsense]

Looking down the road

I know that everyone with an autistic child, whether or not they have mild autism, severe autism, or autism spectrum along with another disability such as bipolar, deafness, blindness, or something completely different, doesn’t know what they will expect as their child (children) grow older. It is almost too overwhelming to look at as everyday you are working with your children to make them the best that they can be, along with still mourning what you wish they could be.

In approximately 1996 when Chris would have been 5 or 6, our county MRDD workers stood in our kitchen as they evaluated Chris for special needs services as an elementary school child. This was heartbreaking to me anyway, just facing that Chris would be attending special needs classes and having services for someone with a disability. We didn’t even want to face that even though he’d been diagnosed with autism for 2 years.

As the workers spoke with us, they said, it is good to get your child on a waiver, or more than one, as you never know what the future will bring. They described these as one) a waiver on which he could get adult services in his own home and two) a waiver on which he would be placed in a home for special needs people as an adult. I don’t remember if he was on any other waivers.

We did sign up for these waivers, hoping we’d never need them. However, in 2008 we did have Chris go to a group home, as a 17 year old. This is more described in my other personal blog and I’m sure I will bring it up again here, as things are still unfolding in that area that we don’t know the results of.

Two lessons here, though, I would say to always sign up for the waivers when your child is young. You can always so no later. It’s never permanent either — we said no to the residency waiver 5 or so times as his name came up, from age 13 to 17. The 6th time we said yes, and he’s been in a very caring group home for a year now.

His I/O waiver listing was messed up. In 2002 I called to see where he was on the list — he WASN’T ON THE LIST. They told me he was on in 1996 and never put him on. We don’t know to this day what the six years lost would have done. Maybe he could have already had an I/O waiver and had someone in the home to help him already. We’ll never know. Now we are awaiting the I/O waiver in earnest, as he may be coming home from the group home as he is yelling too much and not sleeping.

So another lesson, in addition to signing up for the waivers early, also CALL every year or so and make sure they’re still on the list and where they are on the list.

More soon.[ad#Google Adsense]

A blank slate

After typing into my personal blog, at its 3rd home right now at blog, I am a bit stymied attempting to begin this new blog that has been on my mind for a while now. Technical details like WHERE do I want to house the blog, and what to call it, have interrupted my just BEGINNING the blog, which I’m attempting to do now.

My purpose in this sharing endeavor, to become a better resource and help to those of you out there watching your children with autism and other disabilities learn much of what I have learned, but hopefully faster, and perhaps to share with me things you have learned faster than I have. We also have co-morbidities (that’s such a terrible name, isn’t it?) in our different abilitied children – due to my dad apparently having an inheritable deafness gene, our Christopher is totally deaf (found out when he was 15; he’s now 18) and Ryan is partially deaf at age 7. I also have a slight hearing loss.

At this moment I’ll simply direct you to this resource page: http://criscollrjblog.wordpress.com/autism/, but I have to confess that is out of date; I will most likely be updating that and moving that onto this site.[ad#Google Adsense]

The Western Maryland Mountains–


DSC00859

Originally uploaded by criscollrj

The new header I made (first one on WordPress.com!) is of the Maryland Mountains we saw on our business trip in early July. I know I “facebooked” about it in the pictures on there, but never typed on here. Then I found out a friend of mine from the transcription board lives RIGHT there at Deep Creek Lake. We’re going to meet the next time we go out there.

Deep Creek Lake

Then I saw another friend on Facebook had just seen the Backbone Mountain in Maryland near that area and had beautiful pictures of it as well. It’s so neat that such beautiful mountains are so close to our business trip area (we did travel a few hours East in the evening to get there, but it was so worth it!)

And check it out, googling for images, and there’s a lot for sale!

What a beautiful lot! Wish we had the $$![ad#Google Adsense]

Related Posts Plugin for WordPress, Blogger...