16 February 2009

Warning: Heavy self-indulgence

Yesterday, we went to a Family Circle Supper -- a group of families from our church who have a meal together once a month. We met a new family with two kids from Guatemala, the mother working at a home study business as a parent resource. In all, there were 4 kids who were close enough to Julia's age for her to play with. After staying by herself with her clay creations for awhile, Julia joined the kids. We were in a conference room at the church because the hosting family lives in a small apartment. This meant the kids had the run of the hallways and did they ever use it. The ran, played tag (Julia played tag!), and exhausted themselves. It was good to see her connect with kids on this most basic level. There was lots of shouting and other parents claiming that shouting. I know Julia bossed the most compliant child a bit -- okay, a lot, but there was a stubborn boy and his very active sister who would not enslave themselves to her. And still wanted to play. That was good. It was a good way to end a rather difficult weekend, and a good break from what looks to be a tough week.

I have said to Julia's teachers and other therapists that because we are really beginning our attachment work that I expect that Julia's behavior will be more difficult. Right now, I understand why one would back far away from this work and just try to keep things peaceful. Oy! The kid is tough.

Right this second, I have no faith. I could dissolve into a puddle.

Today, I am dizzy from consideration of both autism and attachment. I don't mean that I see them as separate and divisible, but I am feeling the weight of my optimism that I will find a way to heal Julia. I am counting on attachment therapy to change Julia; I am counting on our OT, speech therapy, and social group to change Julia's autism behaviors. What if it just don't happen? What if . . . you see, she is moving forward slowly but very slowly. When we set up our IEP last year, the hope (and the whole team hoped this) was that Julia would finish kindergarten work by the end of first grade. She may be there reading-wise, but not with numbers. And behavior? Who knows.

I'll tell you what started this most recent dive into reality/supposition -- last week, at speech therapy, Julia and her therapist read/told a story. Julia answered Kimberly's questions and did some making of inferences and figuring out what came next. Julia was at her responsive best, she was attentive and engaged. I asked Kimberly about Julia's behavior and where she would put it in chronological age expectations. She hesitated and said somewhere between 3 and 4. What I was seeing as a big leap in progress was really inching along at an agonizingly slow pace. After our Waisman Center testing, Julia was judged to at an early 3 skill level in most things. So in the past year, has she only move a few months forward maturity-wise?

I want to think that she is working on many levels and that sooner or later she will thrive in an inclusive classroom. But is she losing ground? If Julia is a functional three year old, what will an inclusive second grade look like? Will she be dragged up grade by grade scaffolded up by aides and sn teachers who help her to complete parts of assignments that she doesn't understand or learn from.

Okay, a bit grim. Too grim, in fact.

I better not even get started on the attachment stuff.

I have a picture of Lisa's Sarah when she was about a year old. She is in her mother's arms but she has flung her body backwards and is laughing upside down at the camera. I have always loved that picture. To me it is Sarah being absolutely sure of her mother, Sarah fully understanding complete love before she was able to say a word. I ache inside because Julia will never have that. It is as simple as that.

Okay, so it just dawned on me. I think that I have accepted Julia's disabilities and challenges, but is this just more of the mourning process as I settle into a life with a severely disabled child?

5 comments:

Anonymous said...

Reading, supporting, and loving you all.

Traci

Anonymous said...

I read your blog in that it seems that Julia is making great...yes maybe slow progress. She can read! I understand the frustration...and fear. You might remember, my Meileigh has many of the same issues, and seems to be making the same very slow progress. After two years we struggle with language - but she is 4. I always say we take two steps forward and one and a half steps back. I too fear having a life filled with a disabled child. On my good days I say I must just take it one day at a time. On my bad days...well those are just bad days. I have heard many stories of these kids overcoming and doing well...but I guess that there are probably equal stories that do not come out so well.

Hang in there.

Carol

Carol

Suz said...

Traci -- thanks for the support. I feel the love. Can't do without it!

Carol -- Yes, Julia is making progress, but it was just a bad day. Sometimes I think I should just not write when I feel so frustrated, but it is part of the blog's purpose. Good to hear the Meileigh is making progress -- and language is not easy. When I think of how far these kids come, I am continually amazed.
s

Sammie said...

As a mom of two adopted kids with addtional unexpected Special needs I can so relate. Just like your daughters progress,emotionaly and academicly is two steps forward one back, So is yours in terms of dealing with and accepting what she struggles with.

Some days will be fine, others will be ones that knock the wind out of you. While I don't grieve much for what might have been (I'm 7 and 5 years into my kids adoptions they are now 13 and 10)What gets to me still is when moms of typicaly developing kids judge my kids by their standards, even ones who know my kids have issues.

For me that is the last hurdle for me to overcome, come to grips with emotionaly. I have grown and been strached so much by my kids. Not always williningly, but I see what good hearts they have, how much caring they have and I am comforted. Others may not see that part, but I'm the Mom and I know the truth of who my kids are and, really that is all that matters.

Just know that your daughter will be OK, and so will you. Your life together may be more of a cirucitist route with lots of uphill challenges and backtracking and not the straight ahead forward full speed ahead that others who may have adopted the child who turns out to be gifted. In the end you will be the one with the bigger heart and know how much love can heal.

Spend time with other Moms who know what a miracle it is for the chld to walk at age 3 or read at aged 10. Don't waist time comparing your self to "normal". Trust me its very over rated.

OK I just had a great weekend with both of my kids, on another weekend you might get a very different post. :)

Sammie
Mom to Andy 13 adopted from Thailand and Alex 10 adopted from China (who by the way may be PDD-NOS too) Both of whom have had attachment challenges, learning struggles and probably a list of other things but are still making progress in their own way, as am I.

Sammie said...

Dang, I wish blogger had spell check, I could sure use it.