Direction?

At this time I'm not sure of the direction I am taking this blog.  I am going to leave it on here, but believe I will copy the posts over to my main family blog, about autism and deafness also, as well as family issues, and tag them as Autism/deafness lessons.  That blog is at criscollrj.com

Autism awareness personified --

I don't usually cross-post, but I had made this entry into my personal blog today and thought it may be valuable.

Watching our children grow up in the world of autism and deafness, it has become harder for me to really be active in the community of autism, as it takes all our energy to just keep our children safe and well in the world.  It is hard to see outside our own lives.  I am grateful,however, that many people in the world, even people who don't have children or family members with autism, are working so hard to promote awareness and that today instead of being a rare condition it is becoming one of the most discussed and researched conditions.

I am hoping through my life to also work to be an advocate and learned person in the world of autism and deafness, which is the condition that most affects us personally.  That is an area of deficit today - there is little information or services on individuals with autism and deafness.

Here are a few:

• http://deafness.about.com/cs/multipledisab/a/autism.htm This web site contains this magazine pdf as well:  autism and deafness article, click on the second link after you clink on this main link. 
• http://www.raisingdeafkids.org/special/autism/
• http://www.mugsy.org/connor113.htm
• http://autismparents.net/deaf-with-autism/
• http://www.autism.com/families/hearingandvisuallyimpaired/networkfaq.htm

I am encouraged that there are way more than when I started these blogs in 2006.  I actually printed the Gallaudet University article (60 pages) and have read through about 30 pages of it.  We also are applying for Chris to go here:  http://www.nda.com/services/autism.php It will be hard to send him all the way to Florida, but it really sounds like they could meet his needs there.

I am also thrilled that I am back in school and headed for this degree:  http://www.kent.edu/ehhs/spa/index.cfm with http://www.kent.edu/ehhs/sped/index.cfm (the autism certification).  I also hope to get fluent in ASL either now at Lakeland (where I am currently attending) or at Kent.  I hope in the end I can be of more help to my boys as well as other individuals.

Thank you to everyone in the world working to make a better life for those touched by autism, as well as autism and deafness.

Something to know if your loved one is placed in residency --

When you reach the difficult decision to place your son or daughter with a disability in a group home, it is good to know what services will actually be lost when they go in. Now, there is no problem most likely if the home provides good services while he or she is there, and keeps them there. But if there's services you are used to getting at home and they don't provide them at the group home, there is no way to get them aside from you paying for them, and if they are discharged from the group home, other services he or she used to get as a minor, in your home, may be lost, not to come back just because they are discharged.

Here is what has happened to us, so far.

• Chris had wonderful health services in his group home. We were totally satisfied with that.
• While he was in his group home, he lost his connection with "FRS," our county's financial assistance for things such as camps, activities that need to be paid for, and equipment. The group home covered his food, shelter, and things like that but did not cover hundreds of dollars for things such as Saturday camp that he had had paid for by FRS for many years. Last year, while he was in the group home, we (actually his grandma) had to pay for it.
• We fully expected him to be back in FRS when he was discharged by the group home (via their choice, he was not appropriate for the home, they said). So we requested FRS to pay for his Saturday camp this year, and they said no, that he was OFF the service even though he is now out of the group home. By him being placed in the group home, he lost all rights to ever be on that list without starting at the bottom of the list again. NO ONE TOLD US THIS.
  
• He has a year and a half wait for services, but only is eligible anyway until he is 22 years old (I think at the end of his 21st year, so after November 20, 2012 he'll have to no services anyway). He will be 19 in a few weeks but has at least an 18 month wait for services.
  
• Our understanding was that after he was discharged from the group home, without an appropriate new home to go into (where services are provided for autism and deafness and there are special procedures in place to deal with his screaming and insomnia) that he would be placed at the top of the list for an I/O Waiver to provide services for him in his own home. This was also the group home's understanding, and they even advised us to go ahead and tell the county that he was being discharged as that should be an impetus for the I/O Waiver for care to be received very quickly.
• After he was discharged we found out that that is not true, that his being discharged has no bearing on the list, and it could be 20 years before his place on the list is called. This means a very long wait for transportation assistance, assistance with adult employment, additional care in the home, etc.
  
• I now am fearing he may have lost his place in the adult services list. I don't know -- I have done an email to check. But I haven't received a newsletter from them in several months, and if he lost his place on there with going into the group home, he will have no workshop services when he gets out of school at 22.

I'm just posting this so that others ask all the questions they need, before placing their loved one in a group home. I'm not saying not to place them - Chris's health has improved greatly after his year in the group home and he has been on a good routine -- they helped him a lot. I just did not know he would lose his place on the lists with his placement, and am not totally sure I would have done it that way if I would have known.

Just another challenge in the walk we walk, as parents of children with challenges.

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.

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.

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.