Thursday, March 29, 2007

Our Adoption Anniversary

Today is the 23rd anniversary of becoming a family. I read that you should tell the story of a child's adoption just as any other bedtime story and frequently told him the story rocking him to sleep at night. Eventually I just started telling him the every year on his adoption day. When I started doing visuals I created one for his story. It's on my website here.

Another suggestion from my reading about adoption was to have an adoption birthday just as any other birthday. We have always done that but now we call it our adoption anniversary because it gets confusing as a birthday and because it was really a special day for me too. Throughout the day each year I tell him what I was doing or we were doing at various times of the day. For example, Raymond (my late husband) couldn't get the day off to pick him up so my mother went with me to the adoption agency. We call my mom every year at approximately the time (10:30 a.m.) that we picked him up. That way we sort of share the anniversary with her. They both love it.

Today my thoughts seem to be running to how far we have come and how many expected turns we have taken. Also how much different I am because I have had the joy of being Billy Ray's Mom. Hopefully we have made a difference in his life too.
Earl, my stepson, told me at the time of Raymond's death that Billy Ray was the best thing had ever happened to his Dad. It did change him a lot.
When Billy Ray was little saying "Earl" would come out "girl" so Earl taught him to call him "Bubba" for brother. When we went to California to meet Larry's family, Billy Ray immediately started calling Michael "Bubba". It was like he just recognized him as a brother from the start. Michael is Billy Ray's champion. He talks about him everyday many times a day. The above picture was taken with Michael and his wife, Rebecca, at Thanksgiving.
There is so much more that I could say about our life together but Billy Ray is ready to have his story read to him and we have an adoption anniversary to celebrate today.

Monday, March 26, 2007

Establishing Relationships That Last for Your Adult Child When You Can't Be There

You may have noticed I haven’t written much since starting this blog. To be honest, I am struggling a bit trying to decide what to put on this blog and what to put on Parenting a Complex Special Needs Child. My big thing has always been preparing for adulthood and I have written about it extensively. However, sometimes you have to start where you are. Thus, today’s blog.

As parents we expect to around to be a support when our adult children go into an apartment or program. We may not be able to do that. I have a whole chapter on estate planning in my book because I often became guardian or trustee after the parent had died or became too ill to advise in the care and planning for their adult child. I created a form for medical and development history, visuals and documents about the routine and care required for my son so they are available to someone in the event I am no longer able to communicate his needs to the appropriate person.

However, last summer I had the privilege of sitting in several of Dr. David Pitonyak’s sessions at a conference where I was speaking. It gave me real pause to take another look at planning. Dr. Pitonyak kindly puts the handouts for his various presentations on his website. You will find them great reading.

One of the things that hit me hardest was Dr. Pitonyak’s statement “Imagine if the only relationships you had were people who were paid to be with you?”

I don’t mean to imply that every family who has a member with disabilities is isolated; however, many are. Some marriages become real teams and others fall apart when confronted with parenting a child with special needs. Long-term friendships are hard to maintain with the responsibilities we carry. Depending on your child’s situation it may seem overwhelming to go out in the community so isolation becomes the norm.

If your adult child is in a group home or some kind of facility it would be easy to say he or she has plenty of friendships among staff or fellow residents. In The Importance of Belonging, Dr. Pitonyak says: “Although paid staff can be friendly and supportive, they frequently change jobs or take on new responsibilities. The resulting instability can be devastating to someone who is fundamentally alone.”

Fellow residents may also be short-term or your adult child may be moved to another placement. These relationships are not necessarily enduring.

Friendships for your child or adult child can be established in much the same way you develop friendships. You meet someone with similar interests or background. If he or she loves to bowl spend time at the bowling alley. Other people there doing what they love get used to see you and your child there. Comfort level usually increases and sometimes relationships ensue. Whatever he likes to do spend time in a regular setting that enables him to do what he loves and to meet others with that same interest.

Some relationships may come from within one’s family. An example for Billy Ray is one of his “neeses” (nieces). He has good relationships with many of his step-nieces and nephews. One is especially close – if I am talking to this step-granddaughter on the phone and she hears Billy Ray in the background she will say “is that Uncle Billy Ray? Let me talk to him, it will help.” It does help calm him to talk to her in person or on the phone. I have noticed that he interacts with her more than with most people. You can tell he makes an effort to do that because she is important to him.

I was reminded of the importance of common ground in relationships recently when we spent a weekend visiting at my brother and sister-in-law’s house. My brother remarried a few years ago but we haven’t had a lot of opportunity to get to know his wife, Meri. She is a social worker so responses to Billy Ray were probably more natural than they might be for some. However, besides being very good with my son, they clearly shared a mutual interest in dogs. The picture shows Meri sharing her dog with Billy Ray.

Dr. Pitonyak also talks about the importance of having someone who holds a person’s “story”. I plan to write on that in another post. However, I wanted to say that having relationships that endure after parent(s) are no longer available, especially if that person understands what life was with parents and really knows a person is vital to their security and happiness.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Parenting A Complex Special Needs Child and Lighthouse Parents
Websites: Parenting Your Complex Child, Lighthouse Parents and Peggy Lou
Club Mom Articles
Parenting Your Complex Child Yahoo Group

Wednesday, March 7, 2007

Comment Moderation and Word Verification

When I first started this blog somehow spammers were able to get a ping or notice of some kind whenever I posted. Almost immediately I would get comments that appeared computer posted on everything from male enhancement to general spam products. I finally activated word verification because it was supposed to stop the computer generated spam comments. A live person would have to type in the word to post a comment.

That worked for the most part for quite a while. In the past few months it is not stopping almost daily inappropriate comments. For example, someone (appears to be the same person but with multiple addresses) has been leaving a comment on my October 2005 post on behavior medication. This comment was trying to sell pain and other meds of the type you would need a prescription for. I have deleted it over and over again.

Tonight the computer is beeping me with new mail for a comment on several posts. I logged into Blogger and had just deleted one when my email software beeped me for the same comment on a different post.

I am not a big fan of comment verification mostly because I am afraid I won't get to them quick enough to approve them. However, it is time to take that step. I hope my readers will bear with me.

Until next time,
Peggy Lou Morgan

Monday, March 5, 2007

Awareness That Brings Acceptance of the Individual

As we near Autism Awareness in April, I have been thinking about the conflict I wrote about in Acceptance – Not a One-Sided Issue on my Amazon Blog last year. The comments made by Cal Montgomery in her review of Autism is a World and partially quoted in the referenced post have continued to haunt me. I was bothered by the following comments made by Ms. Montgomery:

“Once they're aware of the sorts of people we are they have basically two options: they can react to us in some special way (special ed, special workshops, special segregation, etc.) that takes our fundamental difference from them into account, or they can lose interest altogether and wander off to do other things. ***”

“I tend not to cooperate in awareness efforts. I am tired of being what Jim Sinclair calls “ a self-narrating zoo exhibit”, tired of being told by the neurotypical parents and teachers and professionals who deal with autistic people that my only value is as a sort of reference work they can use to help ensure that a couple of generations from now there is nobody like me on the planet.”

I thought about it again after watching CNN’s interview with Amanda Baggs and reading Dr. Gupta’s blog about the interview.

The problem with awareness may be that it is too much geared to stereotypes and the idea of a cure and not enough on an individual. Society tends to forget that Autism is a spectrum and not every person will experience it the same way. As Bonnie Sayers points out there is a variety of things to be learn about. Not every person experiences the same things.

Billy Ray is Billy Ray. He is not Amanda Baggs or Sue Rubin. He is not just an Autistic adult or an adult who experiences Down syndrome or bipolar. He is unique. He can’t be pushed into systems for the group, he needs systems that work for him individually. When that is done, he is able to enjoy his world and has much to contribute to it. It is probably the same with your child.

It was devastating for me to realize that Billy Ray didn’t really benefit from programs that others swear by. For example, a program that is often used by therapists and frequently praised by fellow bloggers was tried for long periods with Billy Ray on three separate occasions. That doesn’t make it a bad program. It has clearly helped thousands of children and parents.

I told a new therapist that we had tried that program twice and it didn’t work. He actually yelled “what do you want from me”. What I wanted was time to be taken to get to know Billy Ray and find what worked for him. I finally started documenting and trying to know my own son better, adapting his world to what worked for him as an individual and to communicate him as he is to others.

If awareness is to make a real difference it must see the individual not just the group. We are asked to allow for diversify in many types of peoples in our society. It is time to recognize diversity and VALUE in children and adults who experience special needs too. We need to advocate for flexibility in community and in services so that everyone can benefit.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Parenting a Complex Special Needs Adult and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom Articles
Parenting Your Complex Child Yahoo Group