To say that today was a long day is a drastic understatement. I am drained and I seriously contemplated just going to bed with Olivia at 8pm but I think that writing a little about our day will help me feel better. I thought that I was prepared for our appointment today at the Carolina Institute for Developmental Disabilities. Our first appointment there last April was hard experience. It was the first time we were really given information about Sanfilippo syndrome. It was good to get the information but terrifying and heartbreaking to hear. I went into today's appointment knowing that I am the mother of a child with special needs. I thought that I was in a good place, ready to get information, ready to gain insight. I really thought that we would hear good news. In so many ways I think that Olivia has made such huge improvements. She's talking now! Granted she's using 2 and 3 word sentences but she has hundreds of words. She can share her needs and some of her feelings. She sings some songs and nursery rhymes now, she knows the days of the week, she can count from 1-10, she knows her colors and her shapes, she can string beads on a shoe lace. She has favorite books and characters. Cognitively I had thought that she was miles ahead of where she was last April. I was prepared to hear that she had regressed physically. She was laying in a hospital bed for several months and she's been on some high dosages of steroids that weaken her muscles. I knew that we still had a long way to go to help her regain her pre-transplant skills. I thought that they would be impressed with all that Olivia has learned since we were there last April.
The day began with some developmental testing. I went into another room so that Olivia could work with the developmental testor. The test went terribly! Olivia didn't mind tat I'd left the room but it was impossible for the administrator to keep Olivia occupied and engaged. Olivia didn't place things in a cup, she wouldn't stack blocks, she wouldn't nest cups, she wouldn't follow simple instructions, she couldn't point out her body parts, she couldn't point to something in a picture or lable anything, in fact I don't think there was a single thing that she did do correctly. They didn't get very far in the test because Olivia seemed so unable to complete a single task. She was putting everything on her mouth which she only does when she's stressed and uncomfortable. It was awful and painful to watch. Olivia did better with the physical therapist. They were able to at least get a good idea of what Olivia's physical limitations are. We had to wait for almost 2 hours for the doctor to come in for the physical exam. For the most part Olivia did well during the exam but by this point it was almost 2pm and Olivia still had not had lunch. She was cranky and tired of being in the exam room and she started throwing things and hitting me. She just started hitting during the last week or so. She seems to do it when she's tired or bored or just trying to be playful. It isn't hard but it is strange to see this aggressive behavior from her. She only does it with me so I thought it was just a behavioral thing, she's mad at me for giving her less attention so she was physically trying to get my attention. At 2:15 they finally let us go grab a quick lunch before we came back to get the results.
Olivia and I went into a sandwich shop (her first experience in a restrauant since before her transplant). The goal of today's appointment was to determine if Olivia had regressed since her transplant. I was expecting some regression in her fine and gross motor skills but I was expecting huge improvements in her cognitive comprehension and language expression. By the time we got back into the very same exam room where we'd spent the first 4 hours of the day Olivia was exhausted. It was well past her nap time. She was sick of being in that room (as was I). She was tired of the toys I had brought to entertain her and there was not a single toy or entertaining object in the room. She wasn't hungary because we'd just eaten. Olivia threw things, she wandered around the room constantly, she wanted to be held, she wanted down, she wanted to pull my hair, she hit me, she threw things at the doctor, she emptied the entire diaper bag, she played with the mini-blinds, she got up and tried to leave the room at least 4 times. While Olivia was roaming around doing her best interpretation of a category 5 hurricane. The doctor and her nurse practicioner calmly, rationally told me every single behavior or new ability that I thought represented cognitive growth and development was really a sign of regression and disease progression. They seem like nice people but at that moment I hated them, I hate Sanfilippo syndrome, I hate that I don't get to know what kind of person my little girl is because she has this terrible disease. Then the tears came and they're still comming by the way, this better be theraputic!
They said that Olivia may know more words but she doesn't understand the meaning behind them, that she uses them randomly without purpose. They determined that she was at the exact same level that she was last April. She scored higher on expressive language but lower on receptive language so it canceled eachother out. Cognitively they determined that Olivia is at approximately a 15 month level. OUCH!!!!!!! I know in my heart that Olivia is far beyond this but it's a standardized test and she just didn't perform well. When I mentioned the new skills that Olivia is doing, lacing, stringing beads, etc. They said that kids remember the skills that they learned most recently and that while those are closer to age appropriate skills she has "lost" other more basic skills like stacking and sorting. I don't know if she really cannot do these things or if she just didn't want too. We haven't practiced these old skills lately, we'd been focusing on new ones. They didn't even get to the portion of the test that would test for these new skills because Olivia performed so poorly on the initial part of the test.
Then it got even worse. They went on to say that Olivia, like many other kids with Sanfilippo syndrome, is beginning to exhibit some autistic behaviors. Not that she has autism but that often kids with Sanfilippo syndrome exhibit some autestic tendencies. Olivia's wandering and roaming around the room for example. They noticed that Olivia also seemed to not display empathy. They sited the time Olivia hit the doctor with her rubber mallet and laughed and Olivia's frequent hitting. They said that she wasn't able to demonstrate care and compassion. Of course at this point I was crying and Olivia crawled into my lap for a hug and a cuddle. They said that she's not comforted by physical interaction and would prefer to be alone. They said that kids would normally want to engage with the tester during the developmental test but that Olivia didn't want anything to do with her.
It was really tough to hear. I still have so much anger that I can't really process what happened today. I know that Olivia can do better but at the same time it was a standardized test and I understand that she does need to be able to perform certain tasks when asked to perform them.
I finally got a chance to talk to Mike about our day. He made me feel much better about it. I know that I take a lot of this stuff personally, I don't know how you can not take things like this personally but Mike is great at helping me maintain perspective. I feel better after the venting but it was still a rough day.
