Saturday, August 22, 2009

Ambiguity Is My Middle Name

Our disclosure meeting is scheduled for the end of this week. Our families have been going a little nutty, talking about cribs and toys and becoming aunties. I guess everyone gets extra excited about a baby.

We haven't told them that the child's case worker called us at the end of last week and told us that Early Intervention has been looking at Baby Boy as possibly having autism. This is the same worker who went on about how on target Baby Boy is and how she would take him home if she could. She said she just found out when she received a recent report. However, she says he's improving. He was identified as having low muscle tone (which has gone to the normal range with PT), self-stimulating behavior (didn't specify what-flapping, head banging, rocking, tensing, staring at lights?-but did say it has almost completely gone away), and delayed language skills (at a six month level so three to four months behind; however also improving with EI speech support). Either she had no clue what those possibly added up to or she doesn't know him as well as she seemed to.

One of my best friends has a child with autism who was diagnosed at 15 months. I remember her telling me when he was 10 months old that she had a feeling something wasn't right. I called her right away. She said the above are all signs of autism, but that most kids have some autistic tendencies at some point. Both her children had low muscle tone and both her children self-stimmed (one by tensing, staring at shiny objects; the other by staring at ceiling fans) but only one has autism. She said if the self-stimming is truly almost completely gone, that's a good thing. Kids with autism always have some kind of stim. If one goes away, another replaces it. Her son has gone through about 15 different ones. She also wasn't that phased by the language delay because supposedly his language is improving quickly with EI speech therapy. She said it took her son a year of much more intensive hospital-based speech therapy to just be able to get the concept of yes and no. She has offered to read the EI reports for me when we get them and suggest some specific questions to ask the therapists and the foster mother.

The child's worker said she will give us the name of a specialist at a prominent children's hospital in our area so we can consult with him as well. And of course, she reiterated that there are no guarantees. She said if we had a biological child, he could be facing the same profile.

The last part was more than a little annoying. Adoption is different than having a biological child. If your biological child has autism, you have no choice--you deal with it. Choosing to adopt a child that is being looked at as having autism is not the same. We would be taking a risk with enormous consequences. We would possibly be choosing to go down a road that is extraordinarily difficult. I love my friend's son, but I've seen the struggles he has been through just to be able to communicate on a basic level. I've seen how autism has affected my friend's marriage. I've seen how her view of the world has changed. I've seen her exhausted, scratched and bruised, frustrated because she can't get through to her boy. She told me she loves her son, but there is no way she would be doing this if she had a choice.

The recent news has made us pull back a bit more from the situation. Along with our families, DH and I were starting to fantasize about having an infant around. We had pretty much decided we were going to take the placement and just deal with the legal risk piece. We were thinking about bedding and peeking at the baby clothes when we walked by them. We're feeling more cautious now. Again, we're not looking for a perfect child, but fetal alcohol syndrome and autism are two disabilities to which very few people would say bring it on. This may still be our child, but we're not as sure as before.


Me said...

I find that SW's comment unfair and inappropriate. There is a huge difference between dealing with the hand your dealt and knowingly taking the Queen of Spades in a game of Hearts. I will continue to hope for you Karen.

P.S. I was really hoping to see you this month during our trip to MA for the annual family gathering... of course we're here instead. :p Next year!

caitsmom said...

That's tough. Hoping for the best. Peace.

Tiruba said...

I laugh whenever I hear an adoption worker, social worker, disability worker, case worker, or mental health worker claim that they "know" a child. Never, ever, ever, do they "know" a child on their caseload. They meet with a kid in an uncomfortable meeting for maybe an hour each month...usually less time and less frequency. They may feel like they know a child because they sometimes are the pinch hitter and drive the kid to appointments or pick them up when they are acting out at school or move them to another home...but really, it is only a glimpse. It is like me thinking I "know" my boss. I work with her 32 hours a week and we talk about personal things occasionally but she doesn't know me. The foster parents will know the most, hands DOWN. The therapist(s), again, will only have glimpses and it will be skewed by their therapeutic perspective and their personal investment in the permanency of the child.

I know this sounds like I am being a dooms dayer and that is not my intent. We have done this three times and each time the foster parents have been the only ones who have provided any information even resembling what to expect in our futures.

It is good that you are being cautious. Adoption carries so many unknowns. With children that one poops out themselves, they know their own family history, they know if there is mental illness, they know if the mom drank while pregnant, they know if there is a prevalence of autism or heart issues. With adoption, you don't know any of that and it all takes you by surprise. You, of course!, will deal with it like you said, but it certainly helps to go in with eyes wide open.

Now that I wrote a book, I will end it. Good luck! I wish you all the best. The pre-placement process is SOOOOO hard (much harder than once you get the kids IMO) and I hope you find peace on this part of your journey. Thank you for letting us follow you.

Lost in Space said...

Wow, Karen, so much information to take in for you.

I'm not a fan of your social worker making comparisons. There are already so many extra obstacles to overcome with foster/adopt and adding disabilities to the mix is a lot to take on. As always you are keeping a level head and researching everything to make sure this child is the right fit for your family.

Still holding hope...

Beautiful Mess said...

I agree with Me and with what your friend said. This is NOT something to take lightly. You're talking about the child's whole life. It's not just a few months or years of specialists, it's his whole life. You and your husband have to make sure you can do this. It's a huge, life altering step.

I'm wishing you peace and comfort in knowledge. I have faith that you will get your child. You deserve to get your child.

Barb said...

Wow. Good comments all, that I agree with. I was annoyed as well when I read what the CW said before you even mentioned your feelings. Instantly.

Thank God for that friend of yours. Lots of love and good wishes to you. I hope you find your answer.

Wendy said...

You're right, Karen. Dealing with your child's autism after you've given birth vs. choosing to raise a child with autism when given the choice are two totally different things.

I hope that you get more info from the specialist who you mentioned. Hugs. I'm sure that this has been a really hard time for you guys - so many decisions.

Anonymous said...

Thank you for sharing so much of this process. My husband and I are thinking of adopting and trying to sort out now what we think we can handle--such a tough call. I've been lurking and reading (and sympathizing with) your site for a while and have such strong hopes for your happy ending, whatever scenario it will eventually be.

Claudia said...

Oh, that's so hard. I cannot BELIEVE those unhelpful comments from the social worker... that makes me want to scream.

I'm so glad you've got this friend by your side - I really hope that she helps you to make an informed, wise, choice. And that it won't be too long before you have YOUR child in your arms.

Fiddle1 said...

I'm hoping for the best, too.