Thursday, February 26, 2015

February 27, 2012

Tomorrow will be three years since we found out Lu has Rett Syndrome. When Dr. Coffman called and told me the news, all I said was, "Okay." And he said, "No, it's not okay. You don't have to say that." I feel like I have a weird thing about not being able to react in the way people expect me to in the moment that they expect it, and so what else was I going to say but, "Okay." And although I was floored by what he was saying, and overwhelmed, and devastated, and all of those things, I think I also meant, " what? What do we do to help her? What's next?" But that was the difference between us and Dr. Coffman; he didn't believe anything was next. I guess he essentially believed that he had just called me to break the news to me that my life was ruined, and then to invite us out for an appointment where he would provide details on exactly how it was ruined. Screw you Dr. Coffman. Screw you.

Now, I firmly believe that if I am going to write a blog about caring for a child with Rett Syndrome it is my absolute duty to share the good, the bad, and the ugly, and I think I do. I have written about many difficulties we face each day. I have written about how hard of a time I have at times just contending with the symptoms of the condition, and all other sorts of not so cheery things, but I do my best to also share the wonderful, amazing, breathtaking aspects of being Lucy's momma...because those things far outweigh the dreary things. What would doomsday Dr. Coffman think about that? We have found more good than bad in the aftermath of receiving this diagnosis. Our life is different, and hard a lot of the time, but most definitely not ruined, not even close. 

This was taken exactly three years ago today, the day before her diagnosis:

And here she is today, a big, beautiful, almost-five-year old girl! 

And here is a Valentine she made with her OT. She gave it to her Daddy.  Oh, and used her Tobii to spell her name herself and tell the OT what order to put the letters in!

And here she is choosing flowers for our garden this summer. Some of her choices include a white Bleeding Heart, a bright orange coneflower, and some "Strawberry Candy" colored day lilies. She used just her yes and no head movements to make those choices. 

And just one more: here she is playing her tambourine at the supper table, because she asked to.

So, Lucy is spelling, choosing, asking, playing music, and still smiling. I have already said many times before that I will never, ever, ever forgive Dr. Coffman for the out-dated, negative, and hopeless information that he gave to us, and I will certainly never ever forget it. Here we are a mere three years later and Lucy has already surpassed what he indicated we should expect from her life a zillion times over. And again I say, it's only been three years! What will the next three years bring? And the three after that? And after that? All I have to say is, look out world, because here she comes!

Friday, February 13, 2015

My Baby Asparagus Patch or "Being Zen"

Sometimes people, other parents particularly, will ask me what we have done to assist Lu in continually making progress as a competent alternative communicator.  I generally share a summary of these two blog posts that I have written on that exact topic:

I often get a feeling though, that my responses are disappointing. Perhaps others think there are some magic phrases we use that make Lu communicate successfully. Like there is some secret ingredient to her success, a silver bullet to just make it happen. But there isn't. We just do our very best to maintain consistency, make sure others do the same, and just do what we were taught. Over and over I say, "It is not work, it is her voice", "no pressure", and of course, "Be Zen". These are not my original ideas as I have made clear many times, this is what we were taught at the PODD training. This is why she succeeds. 

This week I have been thinking especially about the mountainous task of "Being Zen".  I truly have no actual idea about what "zen" means in the context of Buddhism or anything like that. I just understand that Linda said Gayle wants people to "Be Zen" in terms of staying calm about the progression of the PODD and not to worry about it ever being a perfect process. That I get. When I was thinking about this earlier in the week, a passage from one of my favorite books popped into my head. From the book, "Animal, Vegetable, Miracle" by Barbara Kingsolver:

I included the whole passage for context, but I was mostly thinking of the part that says, "A too-young plant gets discouraged when you whack off its every attempt to send up new shoots in the spring, abuse that will make the plant sink into vegetable despair and die."  Bear with me while I make these connections. To be Zen, in reference to using the PODD means not getting worked up when things don't go perfectly. We as the smart-partners are not always going to read the communicator's signals correctly. We are not always going to model eloquently, or at the right level, or in the necessary amount. We need to be gentle with ourselves, this is a new language to us too, after all. But even more important than being gentle with ourselves, we need to be beyond gentle with our children. Not every single thing Lu says with her PODD makes sense. I don't always understand her and even after trying to clarify with her, I still might not understand what she is trying to say, and that's ok. Like a gardener would do with a tender baby asparagus, I let her be. I don't insist that she grow too quickly so that she can become what I think or want her to be.  Yes, I want her to be able to fluently communicate right now, or yesterday for that matter. But the secret is to not squash her tender shoots.

No matter what Lu is saying, regardless of whether it seems confusing, or whether she is saying the same thing over and over, I just go with it. I comment, ask questions, and generally just validate the fact that she is communicating with me. Just because it might not be how I think she should be communicating, I have never tried to "whack off her attempts at sending up new shoots." Even when she is just exploring, that's essentially what she is doing; putting her feelers out, trying out her linguistic legs, and then, most importantly, waiting to see how the world responds to her. I think she is successful because our response has always been to respond with support, and patience, and to let her language grow without being too hasty to critique it, or trim it.

Nearly three years ago a doctor basically told us Lucy would never do anything, and so to me each and every word that she says, whether it has a clear intent or not, is amazing. Her body fails her while her mind perseveres. In the midst of seizures, tremors, breath holding, and ceaseless hand flapping, Lu might say, "I want, Barbies" or "I don't like this, crazy" or "Let's go, visit, Bernie, Dr. Sasha, Pappy, Tammy Sue, Dr. Sasha, Dr. Sasha, Dr. Sasha" and it all matters to me. Sometimes she goes to the animals page and says, "pet, baby, cat, Finn, the fish, the fish, the fish, pet bed, etc" and I don't know if that means anything at all, but I keep talking to her about what she's saying. And then other times, like one morning this week, she might say, "I think it's, cool, favorite, something to eat or drink, we, toast, hot, crunchy" . She was telling me that the toast I made for her with cream cheese and jelly is her favorite and then described it. And yesterday she said, "I don't like this, silly, angry, angry, pain, on, my, thigh". So I checked her thighs and legs and in the end she said it was actually her shin that was hurting. Also this week she said, "let's go, picinic, kfc" with her Tobii, and with her book she said, "thought, fun, exercise" in reference to playing in the snow. But in the same week, she has probably gone to the health section of the PODD on her Tobii and made a long string of words about appointments, doctors, slings, medicines, etc, with no clear intent, but just to explore. She likes to do the same in the transportation section, and the weather section, but that's how she'll know where words are when she is really looking for them. It's fine. It doesn't mean she is failing. 

I think I've said this before, and I'll say it again now, and I'm sure I'll repeat it in the future, but I don't believe that Lu is an anomaly. I believe all girls with Rett can communicate like she does, it just comes down to how she is taught, the support she receives, and the frame of mind from her support system. The assumption that she CAN do it, in addition to the belief that communication is crucial for children who cannot communicate in the traditional way are both ways of thinking that are indespensible on this journey. It isn't enough for our daughters to have access to communication just sometimes. And it's not going to work if we try to force their progress into a shape that we want instead of letting it just be what it is, all the while modeling proper language that they will inevitably pick up on when they are ready. We just need to try our very best to be patient, and positive, and confident in the process. With that support at their backs, our daughters will talk to us when they are ready. 

Monday, February 9, 2015

Sled Riding!

Yesterday I ran up to the little local store and the lady who owns it is so sweet and always asks about Lu. Yesterday she said, "What's new?" And wow, was I delighted to say, "Nothing!" Life has been pretty uneventful for the past few weeks and it is a relief! All I had to report was that we had ventured out to try sled riding earlier in the day, for the first time in almost four years and it was fun! It was exhausting, and hilarious, but super fun! We just have a regular sled that Lu could not sit up in on her own, so Chad, much like a sled dog, pulled us around the yard. He was a real Hulk about it too! Lu and I were pretty impressed. And then we made a path down a slight incline and went for some "downhill" rides. Lu and I even crashed once and she seemed to think it was okay and even a little funny! Finn had a fun time also dragging his leash around, unencumbered by me bossing him around. 

Here's some pictures from the good times:

But then of course didn't Lu wake up sounding a teeny bit stuffy this morning. Hopefully it's nothing. I am fine with nothing being new around here for awhile longer!