"Can I Help?"

My husband and the boys worked on putting up our tree a few nights ago. Samuel usually gets quite excited when we pull out all the Christmas decorations, but he tends to stay on the periphery of activity. I was cleaning up in the kitchen when I heard Samuel ask my husband, "Can I help?" I was so happy to hear this! He helped for a short while and then was off and running again.

Tonight we put ornaments on the tree. He hung around the living room while the other children and I did the work. As each ornament was pulled out we had some commentary to go along with it; who had made it or who gave it to us, when we got it, etc.. I had shown Samuel an ornament he had made at school and was just about to hang it up when he said, "Wait, let me hang it!"

Samuel has his own way of participating in our family's Christmas activities, but he definitely participates! He seems to tolerate differences in our yearly activities as well. Last year we hardly decorated the house at all since we went up to Maine for Christmas. This year we waited a long time to get the decorations out. No complaints so far!

Thanks for the comments and good wishes everyone! The fun here is continuing so I just have to give an update! This morning (Christmas Eve morning) I had to call Santa on emergency speed dial from my cell phone. This was for the benefit of my youngest son. Samuel was horrified, "Oh no, Santa! We're doomed!" was his comment. On our way up to Occupational Therapy in the car he gleefully told me, "Hey Mommy, this is Christmas Eve; Santa comes tonight!" Samuel has never expressed so much interest in Santa verbally so this is great fun!

Refrigerator Mothers

Julee posted this video at her blog "Discovering Nathan" back in November.

This is an amazing video about what mothers of children with autism had to endure just a few short decades ago. Parts of it are heartbreaking and parts are downright chilling, especially Bruno Bettelheim's interview on the Dick Cavett Show.

Things aren't perfect now, but I am so glad that I don't have to endure the popular theory that I caused my son's autism!

This video is long, almost an hour, so please be sure you have a good bit of time before you try to watch it; I don't want you to neglect your kids or dinner or holiday preparations!

Navigating the Maze

Well, our Special Education Advisory Committee Meeting has come and gone. I had a few minutes at the end of the meeting to introduce our yahoo group, which is called "Navigating the Maze." This is a private group, so it's not accessible when you do a search for groups on Yahoo.

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?

Starting a New Yahoo Group

Tonight I'm speaking at our Special Education Advisory Committee meeting. I will be introducing a yahoo group that will hopefully serve individuals, professionals, and educators in our local area. We especially hope that it will be helpful to parents of newly diagnosed children with special needs who are finding the search for services and supports to be overwhelming. I remember in the early days after Samuel was diagnosed the information I obtained from other parents was like gold! Anyways, wish me luck!

I'd love to hear how any of you reading this use yahoo groups. I'm currently a member on 20 groups! I only receive messages on about 4 or 5 of them, however. Some are about autism, some are about homeschooling, some are local information, and a few pertain to hobbies I have. I think they are a great way to connect with others who have the same interests!

"Come on, let's play!"

I'm hearing Samuel say this frequently these days and it's kind of nice! When it is time for him to go to the playroom in our basement he will summon any or all of his siblings to join him, depending on who is around. I'm not quite sure if he is actually playing WITH them. It could be that he is only trying to avoid being alone downstairs. His siblings will be able to fill me in. In the meantime, I'm liking the direction he is going with this!

Happy Thanksgiving! Letter to Santa

I hope everyone had a nice Thanksgiving! We had two guests and enjoyed our traditional dinner: steak! One of our guests loves to help prepare food. He has been a guest for holidays with our family for years. As the day went on we kept crossing off things from our menu! I gave up on making pumpkin soup, he gave up making a Bernaise sauce to go with the steak and he also gave up making some bread pudding. Just as well, we had plenty of food otherwise.

Samuel does not care for beef so he had his old standard entree, chicken nuggets! He has not been as cooperative with trying new food as he was about a year ago. I need to strategize a bit. Last year a taste of soda in a cup was enough of a "reinforcer" to get him to try sampling new food. That is not the case anymore.

This is the first year that Samuel will be writing a letter to Santa with a specific request that is his own. He has been wanting an X-Box 360 for a while. We told him, "Maybe you can ask Santa for one at Christmas." Now he goes around saying, "I can't wait to get my X-Box 360 for Christmas!" Here's the problem, we are a Playstation Family! We have a PS2, a PSP, and quite a selection of games to go along. While I am thrilled that Samuel has requested something on his own, I just don't see how "Santa" could bring something that is a whole new system to deal with! We are trying to steer his request for a Wii game instead. He has been using one at occupational therapy and his brothers have tried one at a friend's house. Yes, Wii is a new system, but one that the entire family could get some use out of. (I'd love to try Wii Fit!)

My Helper and Current Happenings

My daughter, who just turned three, is in "potty training" mode right now. About all she wants to do to "train" however, is put on a pair of underwear and then sit on her potty chair in front of her "Once Upon A Potty" DVD. Yesterday she wanted to watch it and she asked me to help her find the DVD. I looked in two places it could possibly be and it was not there. She started to panic and I was about to (because there were about 10 other things I should have been working on then and a DVD hunt in our house can be a real undertaking!) but then I remembered that I now have a helper in that regard, Samuel! Lately I have found that his memory for the location of things in our house is quite extraordinary. Before I went any further, I asked Samuel, "Do you know where her DVD is?" He walked right over to where it was, picked it up and offered to put it in the DVD player for her. Crisis averted!

A little over a month ago I became the new Vice Chairman for our county's Special Education Advisory Committee. Cut and paste this site in your browser if you want to find out more about what the role of the advisory committee is (it is copyrighted so I don't want to do a direct link): http://www.peatc.org/Fact%20Sheets/seac.pdf There is a bit of a story behind this which I will not bore you with here except to summarize it briefly. Our committee was in need of a new chairman and I helped to nominate someone that I know for the position. I was quite surprised when the previous chairman then nominated me for the position of Vice Chairman, a position that I didn't even know existed.

Here I am, a homeschooling Mom, now in the position of advising the local public school system regarding special education! This is not a place I expected to find myself in. However, this is a good thing. I am still trying to get used to the idea and am slowly learning what all is expected of me. One of the first projects I am working on is getting together some kind of a website or yahoo group that will contain information and provide a means for parents to share information and get questions answered. Nothing like that exists for our immediate local area yet. I already have a group in place for the support group at my church, but this new group will be able to reach a wider audience. Recent events have shown that this could really be helpful for parents whose children are now reaching the age of "transition" out of the public school system to adulthood. I also think it will be a valuable resource for the parents of children who are newly diagnosed, no matter what their "special need" is.

In the last 6 months I have also come across two other support groups in our area that I am hoping to become more involved with. One is run by a Christian Church. The t-ball league we participated in over the summer was run by them and they are sponsoring a bowling league. What I particularly have enjoyed about this group so far is that Samuel's siblings have been able to come along and participate. That is so helpful! I don't like to "segregate" Samuel from his siblings to participate in things, but sometimes it is necessary. I wish that I could attend more of their support group meetings for parents, but have only made it to two of them so far.

The second support group I have come across is for autism. They run 8 week parent education groups that I have not been able to participate in yet. I am hoping to be able to participate in the session that will begin this January. A social group for children goes on while the parents attend the meetings and I am hoping that Samuel will be able to participate in it, along with his younger brother. This is the closest group to me geographically that I have found for autism so far. I am already on their yahoo group and have enjoyed getting to talk to other people in my area. I attended a Sensory Integration seminar that this group hosted this past Friday and finally got to meet a few people in person! It has been awkward for me having so much to say to these folks when I haven't even met them yet. I was particularly glad to meet the facilitator of the group, who up to that point I had only talked to on-line and on the telephone.

I am trying to have Samuel involved in Special Olympics basketball as well. We attended the first practise two weeks ago. Since I did not have a physical done yet for Samuel we could not go last week. I tried taking him for a physical this week but he would not cooperate completely with his pediatrician so the form went unsigned. We will try to complete the exam the week after Thanksgiving. That reminds me, I better call the coach to inform him that we will not be there today!

I am always complaining about how busy I am and how there aren't enough hours in the day, and now that is more true than ever! I'm being forced to learn time management skills, and am trying to exercise patience more than ever. It's not easy, but I should not complain. I have opportunities before me that I should be grateful for and should take advantage of.