03 July 2008

Just three things this morning.

Ah, the gods do laugh at human endeavor! Ever since I wrote that Julia is making more meaningful and longer eye contact, I don't think she has looked at me once! I laugh at myself. It will come back again, but I was just reveling in something coming easily. Something that we had not intentionally worked on and made strategies for just developing on its own.

I should have known better.

I have a bunch of things to write about this morning so this might be long if I get them all laid out.

First, we had a tough beginning of the morning today. Julia woke up at 6:30 and started demanding. She wanted to go downstairs, she didn't want to say good morning or please, she didn't want to get dressed, she didn't like what I had picked out for her to wear, she hit and kicked me. Whew! And that was the first 10 minutes. We worked through this -- I sat her in the middle of her room, was stern (not hurting, mommy, etc.), told her to pick out clothes and to dress herself while I got myself ready for the day. Amazingly, this worked, and we went downstairs together in a pretty good revised mood. She had breakfast watching Super Why on tv (I thought it was Super Y, but no. And watching tv during breakfast works for us right now because I want her to see this show.) We had time to do our alphabet lesson and Julia worked pretty hard because a sticker this morning meant she got her hands on the brontosaurus that has been siting on top of the frig for a week or more. After that, teeth brushing and hair combing and skipping to the bus stop were just a delight! Reminds me of the advice in Julia's orphange report -- when she is angry or upset, give her what she wants. However, even though she got what she wanted from me, she did have to work hard and long for it. Our "and" lesson of two days ago didn't go well. Lack of attention or not being ready for it -- I don't know the reason, but I withheld the two stickers that she needed to get the dinosaur that night. Oh, she was angry, but this is a lesson -- patience, forebearance, and earnings -- that she desperately needs.

And Julia could not wait to show her counselors and the kids at the bus stop her dino, not that many of them were interested.

Next topic, my frustration with the experts. I wrote this missive on our local autism yahoo board to another expert. This is in response to her response to my asking about diet and supplements and institutionalized autism. She suggested that I look into sensory integration dysfunction. I said:

Viv,

Thanks for the web site. There is lots to read and digest there.

I don't want to impinge on your professional standing, but I hope I can ask a general question of you. From what I've experienced and read, it seems that those who speciality is the spectrum and not necessarily trained to recognize attachment problems. Likewise, attachment therapist do not seem to recognize spectrum behavior. We work with an OT and a speech therapist for sensory issues and communication. We hope to be working with an attachment therapist in the fall (waiting lists, Bah!). My daughter has an IEP in place for next year that recognizes and addresses her spectrum challanges. But how does a parent make any sense out of what the experts say?

Actually, at our 6-month and 1-year social worker visits, we were told that Julia looked great. She was coming along, she didn't seem to have any challenges that were out of the ordinary for relatively healthy kids coming from China. We felt reassured that that. But we were uneasy, because we didn't her as responding to us and learning in any way that we considered normal. That's when we began our search for help and answers.

Now, that we have gotten some answers -- a Waismen Clinic eval which says PDD-NOS, we hear that attachment therapy should have been pursued earlier, or, like you say, SID. Our social workers are of no use, our doc will refer if we want but is of no use, even the international adoption clinics have no concrete advice as to how to sort through what we consider challenges with our daughter. So where? And who? Sorry if my tone is rather frustrated, but I am. And I am sure that other parents get frustrated as well. Is there anywhere or anyone who can give a family a whole-child picture?

Or does it matter? Are the therapies and treatments so similar that sensory issues will be worked on with an spectrum diagnosis, and attachment challenges will be addressed during therapies that deal with sensory issues?

If you have any answer at all, I'd love to hear it.
Thanks, and sorry for the tone,

We shall see what answer I get. I am frustrated these days about this. I am willing to do the research, do at home work, take Julia to anyone, but somehow and from someone I'd like some idea whether I am on the right path. Certainly, I don't know, and I can't even expect myself to become an expert in any of these things, not to mention all of these things, overnight. Each possible cause for Julia's delays and behavior -- attachment, sensory integration, autism -- have mounds of reference books and scads of therapy theories and options. I have no idea how to chose. I fumble along, pursuing the autism waive from the state which will give her intensive ABA therapy, pursuing a social group, doing the brushing protocol and later this summer a listening protocol, and in the fall begining attachment therapy, but I have no idea where any of this is going. And when is this kid going to have time for music lessons?? Or kicking a ball around. Just the thought that we might be in 3 therapies apart from school that all would like to be schedule during the school day drives me nuts. And I am not working! What happens when I have a schedule apart from Julia's?

Third, and last thing I just need to spill out here: Complusions. I talked to Annie, Julia's OT therapist, a few weeks ago about Julia's drawing and clay work. Sometimes, most times, she gets so, so, so into her work that it is hard for her to move on to other things. I wondered outloud if we should limit her time in an arbitrary way -- a timer, a certain number of minutes a day -- but Annie said that Julia's art work may also be a calming influence, her self regulatory behavior, and to take it away could do damage. I tried to wrap my mind around that, and understand. I couldn't until this morning.

Walking home from the bus stop, a light went off. I am the same way. I dig in my garden and write to self regulate. I can be in the worst of moods, but give me time in the garden, doing the most mundane chores and I am righted. And it is compulsive as well -- It is killing me that I promised myself not not do any major redesigning in the garden for an entire year. I itch to rearrange and put in new plants. I can't help but think about where I would put evergreens, how I need to divide and move the clematis. These ideas just jump into my head and I am off with them. I am the same way about writing -- I need to do it if it a journal or my attempts at fiction. This doesn't necessarily mean that I am good at these things -- I am not awful, but I am not a truly gifted writer or gardener. I am adequate at both, but the sheer joy at seeing words on a page, or a rose bloom and doing the work to make it happen invigorates my spirit.

Is this way Julia's draws and makes her little annimals.

5 comments:

Robin said...

It's great that you were able to turn things around this morning, and recognizing how the clay work helps Julia sounds like a really important step in figuring out how to meet her where she is and gently guide her forward.

I can't speak to the attachment issues, but I wanted to mention that we were recently told by the experts that many of the actual treatments for PDD (NOS or otherwise), SID, and emotional/psychological difficulties which present with spectrum-type behaviors are in fact very similar. In other words, it isn't critically important at this stage if they can't specify which particular set of letters describes what Julia, or my daughter, are going through, since the end result, the treatment, would be progressing along a similar path either way. Oh, and we were also told not to take away or limit the self-regulating behavior (drinking a bottle of milk long past the normal age for it in our case), that since it is so important and helpful to her that taking it away could be damaging. I'm not trying to say what does or doesn't apply to Julia, I just thought you might want to hear the perspective of another parents whose child has a number of interwined and hard to parse issues, many of which are similar to Julia's.

Sara said...

What a wonderful family you are! The love that you feel for Julia just pours through in your posts. Your computer/Julia's work room is so cute and colorful!!

Elaine said...

Yes. Oh thank you. This is so helpful for me in thinking about our little one and how to respond to her issues and difficulties.
I hope you can allow yourself to garden at will. I totally understand that one. I made it through writing a dissertation by growing a front yard full of wild flowers and petunias. And then my garden in North Carolina which I miss terribly.

C&A said...

Hi I have not read your full blog but I am so happy I came upon it. and I am glad you can look through are blog as well! Thanks for letting us take a look into your life-It really helps me with our Miss M.
We have been home a bit over 3 months and it can be over whelming at times!
-Carrie

C&A said...

wow -what a eye opener for us all even with children who don't have issues or at least not one to the naked eye!