Monday, June 11, 2012

Expert

At each of the IEP meetings I’ve attended at O’s current school, the school psychologist has been there too.

And each time, he’s told me that because 5p- is such a rare syndrome, I’ll have to be the expert on it during those meetings. I will have to educate them all.

And well…I’m no expert on 5p- but I do feel like I’m becoming more of an expert on my daughter. Make that, my daughters. Because even though she’s got the typical number of chromosomes, Alyssa needs an expert too. She needs an advocate, someone who knows her better than anyone else and who is willing to step up and step in when she needs a little backup. And damned if I won’t always have my girls’ backs.

As I perused F-Book this weekend, I went to the support page for families with children with 5p-. One mom is new, her daughter is only two months old and she’s facing all the fears that come with finding out your baby has a rare chromosomal disorder.

She asked a question about the size of the deletion in our kids and how that tends to affect each child.

All the comments were kind and as informative as possible. I was able to tell her where O’s break is on chromosome five (she’s missing the area from 5p12.33 to 5p15.2 for anyone who wants to know. Her deletion is 13.58mb in size.)

I was also able to tell this sweet mama that at five years old my daughter can hold verbal conversations, she can walk, swim, run, jump, dance and laugh.

I hope I gave her hope. But I also hope that I and all the other parents who are on that page reminded her that her daughter is an individual. She’s going to learn and grow at her own pace, but she will grow, she will learn, she will laugh and most importantly, her life will be important.

I am not an expert on 5p-, but I am an expert on Olivia. I can tell you about that ticklish spot at the back of her neck. I can explain the softness of her weight she she’s sound asleep and I carry her to bed. I can describe her shy smile and the embarrassed press of her finger to her lips when she doesn’t want you to realize that she’s going to close the toilet lid because her sister forgot to do so and it drives her crazy, even though that very craziness embarrasses her.

My expertise is not limited to Olivia. I can tell you all about Alyssa too. I can tell you that every single night at 7:30, she’s going to want to eat a pickle. She loves pickles, much to her father’s disgust (he thinks there is absolutely no nutritional value to the pickle. I tell him to stow it, she could have chosen a worse favorite snack. I just make sure she drinks some water after her pickle to counteract the sodium.)

Alyssa still loves horses and wants one desperately and yet, she’s old enough these days to understand that we can’t afford such a luxury. She has fun, silly sense of humor that hides behind shyness. She’s quietly proud of being one of the ‘smart’ kids at school. She shares easily with her cousins but not so much with her sister. And that’s okay because that’s where she’s most comfortable when it comes to marking what’s hers.

The expert? That’s me, if you’re asking about Alyssa or Olivia.

I’m still learning about 5p-, though. Mostly how it affects my girl, however. But that’s only because I’m learning that it seems to affect every single individual differently. The size and location of the deletion doesn’t seem to really correlate with the delays that individual may or may not have. It’s one more reason to take our sweet babies home and love them and let them show us what they can do. Expect extraordinary results but give them all the tools they’ll need to reach them.

2 comments:

Julie said...

I love this post and I can't wait until the day that your girls read it and realize what a great mom you are!

Anonymous said...

Your journey with 5p- will be long. I pray you are journeling. You can be the support someone else will need as they go through this with their child. What an outreach to new needy audiences you can be! The internet has brought the whole world to such a small place, that someday, you might be communicating with mothers all over this world. Hand in there, Tommie, God has a purpose in all this. One day, you will know some of the rewards of it all as you re-hash this with your girls. Hang onto the fact that Fod must have you firmly in His Hands...because He trusts you and Tom to handle two of His precious children! Love you.