Sunday, March 28, 2010

Documentaries

Something about me...I love documentaries, especially about people. Here are some that I have seen recently.

little man - about a baby born 100 days early and his struggle to survive. Also touches on the ethics of saving a baby born this early. As a mother and nurse, I found it both heartbreaking and hopeful.

Boy Interrupted- A film made by the mother of a young man with bipolar disorder. It gives you a glimpse into life with a CHILD who has bipolar disorder. You will cry.

Autistic-Like: Graham's Story- A film made by the father of a young boy diagnosed very early with autism, who in fact is not autistic. His father comes to believe the therapies recommended are missing the mark. Graham is "autistic-like", a child with sensory processing disorder. This film hits home for me. Alex can best be described as "autistic-like" and in fact HAS been described that way by several professionals.

This is one that hasn't been aired yet but will air on HBO on April 2. I look forward to it. A Mother's Courage: Talking Back to Autism


I think these films are very well done and honor the children they are about.

Monday, March 22, 2010

Some views on adoption

Adoption is something that I have really come to change my mind about as I have become more informed and have come to know my daughter's story. Over the years I have been asked many questions about my daughter's adoption, both online and in real life.

1. Why did you adopt?

Obviously, it was not due to infertility and there isn't one answer, but rather several reasons. One is that I grew up in a small family, with little extended family around. I always envied my friends who had big family get-togethers and holiday meals with cousins, aunts, uncles, etc. I have a wonderful family which may be why I always wished there were more of us! I wanted a large family. I figured there were kids who needed a family, lots of them. Adopting was always something I had in the back of my mind that I would like to do. After having 3 boys, I really liked the idea of adopting a girl. I first became interested in adopting from Russia after watching a Dateline show about the plight of a little girl in an orphanage in Russia and how many kids were in the same situation. From there I did research on Russian adoption and saw there were indeed many children in orphanages in Russia. I was interested in adopting a preschool age child but our agency would not allow us to adopt out of birth order and Alex was only 2. So we brought Sara home when she was 1.5.

2. Why did you adopt internationally? Why not adopt domestically or from foster care?

I had no desire to adopt a domestic newborn baby. I wanted to adopt a child from an orphanage or foster care. However, I was leary of foster care because of the kids eventually leaving. The goal of foster care is return children to their natural family when possible. That is as it should be and I am all for it. However, I was afraid having kids coming and going would be too disruptive to my kids. My first priority had to be them. (Note: My hesitancy with adopting from foster care was based on the experiences of a friend of mine who had kids coming and going even though she was hoping to adopt. If I had to do it again, I would probably look a little closer at this option.)

3. Why was your daughter relinquished?

While I have shared my daughter's story with close family and a few people online who don't know us in adoption discussions, this is HER story and I don't generally share it with others. Let's just say her mother really did not have much of a choice. When your options are survival or possible non-survival, you do what you have to do. The idea that natural mothers always have a choice is false. My daughter's mother didn't really have a true choice and that is the case far more often than most people would like to think.

4. How do you know for sure why your daughter was relinquished? How do you know she was not kidnapped?

We hired a searcher who made face to face contact with my daughter's Russian family. Her mother verified and expanded upon the sketchy information we were given by the adoption agency. We have pictures and video tape of my daughter's family as well as her story as told by her mother (translated, of course, by the searcher).

5. Will you take your daughter back to Russia?

Yes, this is something we plan to do. We can't do it right now and although I know some people don't agree with this, it is our decision when it is the right time to go back to Russia. For better or worse, we have 3 other children and limited resources.

6. Did you know about your son's difficulties when you adopted?

NO! This question has been asked of me by people both IRL and online. I'll be honest, it kind of irks me. I'm not even sure I can articulate why. It feels invasive for some reason. But again, the answer is no. In fact, during our homestudy, the social worker needed to have the pediatrician make a statement on the boys' health and development. There were no huge red flags. Those of you with kids on the spectrum know the difficulties are not always obvious in infancy or even the toddler years. In fact, a recent study done by IAN (Interactive Autism Network affiliated with Kennedy Krieger) found that the average age of diagnosis for PDD-NOS is 3.7 and for Asperger's Syndrome is 7.2. At age 2 we knew that Alex wasn't yet talking, but we weren't overly concerned because our oldest son was a "late talker". Obviously, the fact that we were clueless when Alex was 2 is not unusual.

7. Would you recommend adoption to others?

When we adopted I was unaware of some of the things I know now. I honestly thought we were doing a good thing by adopting a child who was in an orphanage. I also erroneously thought my daughter would not "miss" her family since she had never lived with them. I always assumed she would be curious and want to find them someday but I didn't think she would feel "incomplete" or like she didn't fit in. Of course she is only 5 so I don't really know what her feelings about her adoption will be but I am aware they may be more negative than positive. She is likely to feel a great sense of loss for her family, her culture, her language, etc. This has nothing to do with us "giving her enough love". It would really have nothing to do with us. It is what it is. We cannot replace her original family no matter how good she has it with us. This is what prospective adoptive parents need to understand and it is something I didn't understand before adopting. Now I am not saying she would be better off in an orphanage, I don't believe that. However, there are many loss issues to consider. Adoption, of course, begins with loss. Without the loss of her original family, her adoption would not have taken place. She will need us to be supportive of her feelings, whatever they may be, and to acknowledge them. So...I would say to others thinking of adoption, please do some research. Read "The Primal Wound" by Nancy Verrier. Read some blogs by adoptees and first moms. It can truly be eye-opening. There is a definite negative side to adoption that the agencies will not tell you about.

8. How has your daughter "adjusted"?

For the most part, very well. She has some lingering issues. She is a food hoarder which is not uncommon in post-institutionalized children. She is also hyper-vigilant. This is also common. I have to be extra careful that I am never late picking her up from school and other places and that if I say I am going to be somewhere, that I am there! This is more important for her than for my other kids. Aside from that, she is also a bit delayed academically. I don't know the cause of this except to say that there is nothing "wrong" with her cognitively. She is bright and curious.

9. If you had to do it all over, would you adopt again?

Hmmm....that is a toughie. Knowing what I know now about Alex, probably not. But that is really the same thing as saying, if you knew the challenges Alex would have, would you have had any more kids? The fact is, I can't change the fact that we adopted and can't imagine my life without Sara any more than I can imagine my life without one of the boys. I feel guilt a lot - guilt that I participated in something that may one day cause her real pain (her adoption). And also that I participated in the "industry" of adoption. Because I have come to believe that the industry is corrupt. As long as there is demand for children, agencies will find children, one way or another. And charge high fees for their "services". I think profit should be taken out of adoption altogther. I think more effort should be put into keeping children with their families whenever possible. I also feel guilt similar to what I imagine a family feels when their loved one has received an organ from someone who has died. I imagine they feel tremendous joy for their loved one but a kind of guilt that their good fortune had to come from another family's terrible loss. I know my joy at having my daughter has come from a terrible loss suffered by her Russian family. It was easy for this loss to be kind of vague before we searched for her family. However, the tears in her mother's eyes and the sadness on her face were very real. I know that as the adoptive family, we have all the joy while my daughter and her Russian family experience great loss. That is hard for me to think about. I DON'T KNOW if I would have adopted if I knew then what I know now (even if Alex was NT). I need to take responsibility for our decsion to adopt and find a way to help change the industry for the better.

Wednesday, March 17, 2010

IEP Success

Alex has met ALL his IEP goals before the school year is over. According to his special ed teacher, he is able to stay on task, sit up appropriately at his table (without slumping or fidgeting), complete his work, retell a story, and have on-topic communication with peers and adults with at least 3 back and forth exchanges. In other words, he is doing great!

When I am in his classroom volunteering, which I do once a month, I see him having good days and bad days. On good days, I have gotten to watch him play appropriately with 2 girls at the play kitchen, talk with his table-mates at snack time, contribute appropriately to classroom discussions, and join in with other kids' play durning free time.

Bad days - I have seen him isolate himself by "hiding" behind the giant whiteboard and look at a book while all the other kids are playing together, not be able to keep up with multiple instructions during art projects, stare out the window and at the calendar, and fail to greet peers in line in the morning. The thing I notice most about him that is "different" is that he takes a lot of interest in his surroundings, but not as much in the the other kids as is normal. He seems constantly distracted by "things". First thing in the morning, he goes through his routine, walks around and looks at everything, but doesn't seem all that interested in the other kids. He will respond appropriately if someone speaks to him, but he doesn't usually initiate conversation. He sometimes seems out of it.

He is making progress - he is doing well academically, he loves school, his behavior is good, his teachers really like him. However, he still has some work to do!

Kindergarten is only 3 hours and we do a lot of sensory input in the AM before he goes: OT, gymnastics, therapeutic listening, swinging, trampoline, jump rope, etc. I don't know how he will do next year when he is there all day. I think he will need sensory breaks.

But back to the good news!! He met all his goals!! He only has one goal for the rest of the year. It is that he will stay on task and complete work, with no reminders, 9 out of 10 times. That, to me, sounds like what any "normal" kid would be expected to accomplish. We will be adding social goals regarding lunch and recess next year when it is relevant. My fear is he will spend recess by himself getting his sensory input. I need to ensure they are providing that so he can play with the other kids at recess. I am also a little concerned with the smells in the cafeteria. It can be a little overwhelming to my nose at times and he has no tolerance for smells. I don't know how or even if they can address that in an IEP but it is definitely going to make socializing at lunchtime a challenge if he is gagging and dry heaving. I hope his class sits at the table furthest from the food...

Wednesday, March 10, 2010

Autism Acceptance

There is a lot out there on the subject of "autism acceptance". There is even something called the Autism Acceptance Project. And NPR did this story on autism acceptance. I think these types of sites and initiatives are great. I am all for autism acceptance, although maybe not in the way some people mean. What does autism acceptance mean? That is the tricky question.


When I first heard the term, I thought it referred to accepting the fact that your child (or you) have autism or are on the autism spectrum. There are certainly a lot of people in denial, as is common with potentially devastating information. It is a form of self-preservation. For me, personally, this has been quite tricky since Alex is one of those kids who gets a different diagnosis every time we go somewhere for an opinion or evaluation. He has had 3 formal evals by qualified professionals. One diagnosed high functioning autism (possibly Asperger's), one diagnosed ADHD with possible Sensory Processing Disorder (confirmed by an OT) and one diagnosed ADHD with Expressive Language Disorder and sensory seeking behaviors noted. So...clearly "something" going on but not so clear exactly "what". So....I don't want to go around saying my child is autistic if he is not but I also recognize he has many "spectrummy" qualities - he is on the edge of the spectrum somewhere, no doubt. I accept that and even go so far to say he is "on the spectrum" because I think he is. Autism acceptance, right?





Actually, autism acceptance usually refers to accepting autism as a "difference", often referred to as "neurodiversity". Many people think autism (especially Asperger's) should not be thought of as a disorder. Temple Grandin, a prominent person with autism has said she thinks autism is a gift. She thinks she would not have accomplished what she has without it. She is very likely right. I think she is incredible and I'm glad young people with ASDs have her to look up to. No doubt she has postively influenced many parents and children affected by autism spectrum disorders. However, I just don't know how I feel about autism being a gift. I am glad she feels that way and she may even be right. I will admit I wish my son didn't have this "gift". It is one I wish we could return.



What does autism acceptance mean to me? To me, personally, it means accepting my son's limitations and gifts, the same as I would with my 3 NT children. We all have our strengths and weaknesses. One of my most important jobs as a mother is to nurture their gifts and strengths, help them develop areas that need work, and accept that they are not perfect. So, while I accept that Alex has limitations that my other kids don't have, I also believe that some of these limitations are due to a DISORDER. Because I do believe that autism, Asperger's, etc are disorders. Hence the term autism spectrum DISORDER. I don't think it is merely a different way of thinking or being. I really believe there is something "wrong". And if I had the opportunity to take it away, I would. I think Alex would still be Alex without the ASD. I don't think it defines who he is. I respect parents who claim they would not change a thing and believe that the ASD makes their child who they are. It is valid point of view. I just am not there. If I could take away my son's difficulties with making friends, complex motor skills, language, and sensory integration, believe me I would in a second. Because I think life is going to be harder for him than it is for my other kids - heck, it already is. Who wants that for their kid? Who wants to watch their kid struggle? My son is a very happy boy. I hope and pray that he continues to be.



Parents of children with other disorders don't go around talking about acceptance. As far as I know there isn't discussion of acceptance of other disorders as simply a variation of normal. Why is it the case with autism? I know most of the discussion centers around high functioning individuals and not children who are severely affected, but even mildly affected kids can have serious problems functioning in the world. And most kids with ASD are mildly/moderately affected. The reason these discussions bother me is if HFA/Asperger's are accepted as variations of normal, there is no incentive for research into a cure or REAL treatment for autism. And this research is woefully underfunded now.



Then, of course, there is the other end of the spectrum (pun intended) - those parents who literally risk their children's life trying to "cure" autism. I will leave that discussion for another post.

Monday, March 1, 2010

New Blog

I've started a new blog (obviously). This one will be anonymous and comments monitored. It's a shame I have to do this, but I learned my lesson!! As you can see from the title, this one will be much like the last, focusing on my son who has an alphabet soup of diagnoses. One of my biggest frustrations is the fact that we have NO clear-cut diagnosis, but as I read other blogs and forums, I realize my son is not the only one who does not "fit" neatly into any diagnostic box. The diagnoses he has been given, by different evaluators and therapists are as follows: ADHD, "possible" Asperger's, HFA, PDD-NOS, Sensory Processing Disorder, dyspraxia, Expressive Language Disorder, and "possible" dyslexia. Of course he doesn't have ALL of these, but he does have symptoms of all of them. The problem is so many symptoms overlap it is hard to weed out what the core problem is. Some days I think it doesn't matter, as long as I am treating the symptoms. Other days, I think it does because I wonder if we should be pursuing a more targeted treatment plan. Right now my son receives OT and Speech Therapy, and that's it. He has an IEP at school that focuses on communication and paying attention/staying on task/completing work. We follow a sensory diet at home which includes lots of jumping, brushing, and Therapeutic Listening. I have come to believe most of my son's issues are sensory in nature - he is both sensory seeking and dyspraxic. Therefore, for now, most of our interventions focus on sensory integration.

For the record, I have 4 children. My oldest is Ben (for the purposes of this blog anyway since names are now anonymous). He is 11 and has ADHD but no other diagnoses and has managed fairly well. He is very creative and intelligent. He likes music (guitar specifically) and sports (football specifically). He is hilarious and sarcastic - love that!!!!
Next is Isaac who is 10. He is completely NT, a great athlete and a "leader". He is my "easy" kid.
Next is Alex, he of the many diagnoses. He is 6. He is exceptionally sweet (don't believe for one second that kids on the spectrum do not show or express love. This boy tells me he loves me and gives me kisses every day, several times a day.) He is a smart kid who has a lot of trouble expressing himself, getting himself "together" and entertaining himself constructively. I love him the way he is more than life itself but that doesn't mean I wouldn't take away his problems if I could.
And last but certainly not least is Sara, age 5. She is also very sweet and loving. She is outgoing and friendly and always a bright spot in my day. She is adopted from Russia and there will be some blogging about adoption here as well. She is smart as a whip but struggles with language-based academics.

I have followed many blogs for quite a while, both about the autism spectrum/SPD and adoption. I have learned a LOT from them. I want to put my thoughts and ideas down for myself mostly but also for others to read if they are so inclined. Cheers!