Wednesday, February 29, 2012

Anchors Away!

At some point, I think just after her first surgery, Geri's ophthalmologist mentioned the Anchor Center for Blind Children in Denver. He was thinking we could have her vision tested there in a method that would not require her to speak or otherwise provide feedback for a diagnosis. That way, we could get this girl some glasses and help her see a bit better sometime in the near future. I tucked that little piece of info away in my brain and moved on with the other bazillion medical requirements we were slogging through.

Anchor Center at Night
A bit later I finally researched the Anchor Center online and found out that they are SO MUCH MORE than eye exams. I immediately contacted them to find out what they could do for our little Geri. I was told that she is too old to enter the infant or toddler program, and that their preschool program is only available to children "graduating" from the toddler program, but that they didn't want to leave me high and dry so they would perform a functional vision assessment (FVA) on her and give me recommendations for things we can do to help her at home. I was elated that they wanted to help in what way they could, and jumped at the chance for the FVA because it would help me get Geri's IEP process started so we could get services from the school district. 
The "light walk" and "trail rail" help kids navigate

Monday was the big FVA day, and it went about a bazillion times better than I'd hoped or dreamed. Geri was in a horrible mood, but the teacher of the visually impaired (TVI), Cathy, was very patient and persistent. She gave me all sorts of good information about visually impaired kiddos, and the reassurance was great. 

Lately, we've been getting a lot of diagnoses and medically stuff thrown our way. It was hitting me hard, and I wasn't sure why. After talking with Cathy I realized what was happening - all those test results were robbing me of my hope. It seemed that every day brought a new problem, a new hurdle, a new syndrome. When we had met Geri, I remember looking at Nick and saying "She's still in there. I know it. I can feel it. Her mind is intact." But getting all this bad news heaped on bad news was making me doubt. Was she really in there? Was she capable of learning? Of growing? Would she ever be able to have any level of independence or quality of life? Would the rest of us ever have any quality of life, or would we be caring for the same child until our dying day, bequeathing her to some other caregiver when we passed? Only a few nights ago, Nick and I wept together as he said to me "It's not going to get better. We were too late." 

Cathy said to me what no doctor would. Everyone else was so cautious, but she looked at me and said "Lauren, I don't think she's mentally disabled. Maybe a tiny bit, but not significantly. I see visually impaired kids all day. I also see kids who are visually and mentally impaired. What I'm seeing here is a visual impairment, not a mental one." I told her that our greatest hope is for her to someday reach even a partial level of independence, maybe to have a little apartment and a simple job and some assistance with her day-to-day, but it was starting to feel as if that wasn't going to happen. Cathy said, "I think that's the least you can expect for her."

She explained that rocking is extremely common in visually impaired kids. Yeah, it's very common among institutionalized kiddos as well, but if her rocking doesn't go away it doesn't mean she's still coping. It might mean she's looking for sensory input that her eyes don't give. Visually impaired kids tend to use their parents as "puppets" in the way Geri does. They tend to mouth everything, often this behavior persists into adulthood (although it later becomes a private thing). It's a means of compensating for lost sensory input. Eating and swallowing problems are very common among the visually impaired, too. 

After the evaluation was almost entirely finished she said, "I know Geri is a bit old, technically, for the program but would you like to have her join our toddler group? We have room, and I think that Geri's development makes it a good fit. It's a parent-participation group, so you would be with her. We have sibling care, too, for Mera." I told her that I had been informed that Geri was too old for the program and she said "We're not bound by law. We can make exceptions." 

The gross motor room... sans play equipment. 
On the way out of the building their physical therapist stopped me and said "Hey, we're about to have a gross motor session but only one child is here. Would Geri be up to joining us?" She got a full half hour of PT, one-on-one with their PT assistant. On the way out, Cathy gave me an intake packet and told me that Geri could start the toddler group on Wednesday. 

I cried the whole way home. I wept with relief and joy. Finally, for the first time in months, I felt real hope. Someone believed my daughter has potential! Someone was trying to help! After three months of not being able to start therapies because of wait lists and insurance crap and missed scripts, she'd had her first PT session within just a couple of hours of walking in the doors of the Anchor Center. In that half hour, she pushed a toy shopping cart for the first time and learned to ride a spring horse all by herself. She walked back and forth between me and Meg, the PT assistant. 

Outside play area... not pictured is the "sensory garden"
Today, we attended our first session of toddler time and it was great. Everyone was so nice. She got to go back to the gross motor room, and we got a repeat of the spring horse and the shopping cart. Their lead occupational therapist talked with me for about 15 minutes and gave me recommendations for home. She gave me the name of a private therapy group in the Springs who might be able to help us. We sang songs in circle and she LOVED it. She participated happily, clapping her hands and laughing. She had a great time with sensory toys at the literacy room, explored Braile writing, and had an absolute blast playing at the big light table in the light room. She also picked up an admirer. A little boy with Albinism was following her around the whole time, and his mom said he seemed quite taken with her! First day of school and she already has a boyfriend. 

It was great, for me, to be able to be in a group of parents with kids like mine. It gets really old having people stare at you in play areas (a tall 4-yr-old with bulging eyes who can't walk or talk draws attention, I have found). I could rant for days about how people feel the need to give me these condescending compliments about how "good I am with her." When the little kids stare, I don't mind. When they ask questions, I am very direct and honest with them because it helps them to be accepting if they have some chance to see kids that are different. But when the grownups ogle us and politely look away I get frustrated. Today, every kid was "different" and when the parents looked at me it was because they were reading my name tag. They wanted to welcome us, they were friendly, and they weren't casing my weird child as if she were some scientific oddity. We fit in, and it felt kinda nice. 

I am so excited for what the Anchor Center can do to help us. Already, they've given us hope. I'm looking at Geri and seeing potential again. I'm seeing a girl who WILL walk and talk and go to school and have friends and play. I can't even begin to relate how good that feels. It's worth the drive, that's for sure!


  1. Geri will be fine and I can bet she's not doomed to a life as a WalMart greeter.

    Dave's Mom is a trauma survivor (she witnessed tthe murder of her father when she was 4 and was sexually, physically, & emotionally abused by her stepfather from 6 yrs old 'til the day she married Dave's father when she was 18). She made it thru in one piece and, with therapy, she went on to work as a CNA, start a family, and eventually live on her own (after the divorce).

    And if you want to talk about severe visual impairment, just take a look at me. I spent a good deal of time in Doctors offices as a kid getting drops and bright lights flashed in my eyes. And as un-fun as I remember it all being, what I do remember from those trips to Boston isn't the Doctors, it's playing in the playroom w the other kids or walking around ChinaTown with my parents.

    Maybe she won't be able to drive, but maybe she'll be lucky and meet a guy like Dave who doesn't mind driving her around. She can still go to college. She can still get a job. She can still live on her own
    (I did surprisingly well for a blind girl living on my own in North Providence - I got around using public transportation and went to college full-time and worked full-time.)

    Your family wasn't too late. She has access to resources she didn't for her first 4 years - she will be fine.

    Remember, no one ever said it would be easy, but it will be worth it.

  2. You've found exactly what you needed right now and I know from experience that it means the world. I am so happy for you. Go Geri!