If only I could take them all back…

This week I’ve been meeting more families and getting to see a few of the ones from last week again. On Tuesday, I met a family that made me wish I could leave all my things here and pack them in my suitcase instead to come to America and get the help they not only need, but deserve. The whole family came to a session for their youngest daughter who will be turning 6 soon. The lovely girl I speak of is primarily non-verbal with vocalizations, “singing” and some sporadic words (She does use “dammit” correctly). When the parents shared that she liked singing I busted out my best Twinkle Twinkle Little Star. She was unimpressed. Mom started to sing and it was like angels had spoken. I saw why my tone-deaf version of the song did nothing. This young girl showed her excitement for things by screeching. During our session the dad got up and walked out holding his ear and I thought he was taking a phone call. Turns out he has hyperacusis and his own daughter’s “vocalizations” are causing him extreme pain. The dad used to work in construction but can no longer due to the noise. You’re probably thinking well at least the mom can work, but she can’t because she had to quit her job to homeschool her daughter. This mom is in no lesser terms a Rock star. The main reason her daughter had made any progress over the years was because of the work she was doing with her. She shared with me concerns or questions she would take to doctors or professionals only to be told that there was “no such thing” or that her daughter was “fine.” I’m no medical doctor but I have worked with enough children to say that her daughter was not fine. The services they were given was a visit 1 hr. per month to the special needs school where their daughter would sit in a group and as mom described it “just sing songs.” I would never knock another’s treatment plan but it was clear that the parents were not happy paying for something that they could and would do at home with her. The mom shared with me that she was made to feel crazy by the doctors when they would dismiss her ideas. While I don’t know how much my words meant, I told her that her concerns are not only valid but they were spot on. The things she was observing are very much a real thing and even if they are a taboo topic, I told her she was courageous to bring them up and she was the best thing that could happen for her daughter. The mom asked if she could stay in touch with me through emails and if I could send her the “proof” that these things exist. I’ve never in my professional career wished more for a parent to email me.

Today I was the classroom teacher for 7 girls ranging from ages 12 to 2 years. I’ve only ever taught a whole class of children for short periods of 30 minutes to an hour but today I was the HBIC for the whole day (that’s Head B in charge in case you didn’t know). I was the classroom teacher , the lunch lady, the yard duty, the P.E. teacher, the music teacher, the art teacher oh and the Afrikaans teacher. That was the one I had to fake it til I made it the most. There were no sub plans so I just had to channel all the amazing teachers I know and wing it. While they all differ in age, there wasn’t as vast of a difference in their ability (with the exception of the 2 year old) as you might think so that made it a little easier. For P.E. we of course did a dance class and for art I put my adult coloring pages to use! These girls were so well-behaved and were excited when I answered yes to their question, “Are you going to correct our work.?” All of the girls in this class live in a house called Peace Home. It is a foster home for children who have been abused in one way or another. The woman running the home has taught them structure, respect for adults and to show pride in their work. These girls have lived things that adults should never have to see but here they were, working for just the approval of their teacher for the day. They didn’t need a sticker, a caught being good or a prize, my praise was prize enough.

I tried not to cry during my last afternoon speech session, but I was unsuccessful. Another mum brought her 15-year old son into see me. I quickly realized that I really couldn’t help the boy by doing speech therapy but I’m going to try any and all the resources I know to help him otherwise. This young man was born with a Cleft Palate and sometimes when the structures are not functioning no amounts of speech therapy will do anything. It was repaired when he was 4 months old and as mom describes it, you’d never know he had the surgery as he had progressed so well. At 4 years he had grommets (what we call tubes) put in his ears and that doctor decided to also remove his adenoids. Unfortunately often times with children with soft palate clefts they rely on their adenoids. Soon the boy’s speech became hyper-nasal and unintelligible. It was even hard for me and I’ve got a pretty good ear for these things. He’s gone through multiple surgeries of removing rib bones and fat to attempt to repair the damage done, but none of them have worked. Again I was faced with a mom who has spent all her money and more time than she has on trying to help her son. She admitted that she knew I couldn’t help her, but said it was just nice to talk to someone that would listen and understand. I could not promise them anything but I’ve now taken on trying to contact every operation smile, smile train, Cleft Palate South Africa email address I can find.  I have reached out to my Facebook speech groups and I have to think that any new resource is a road that the mom hasn’t taken and if nothing else it might bring her to a name or number of someone she can talk to. I reminded her that she needs to put her oxygen mask on first sometimes and take care of herself because while she is the best medicine for her child if she is run down it wont be as easy to help him.

It’s going to take a lot of cake and ice creams to put this heart back together after this trip.