Wednesday, February 1, 2017

keep on keepin' on

Things are better for Rico.

Things are better for most of us.

Rico is weaning off of his pain meds. Thank God, because it while he was indeed healing, his rational thought process was a little less rational than usual. I mean how else do you explain doing this on his first day out of the house?




His arm strength is good - there's no other way he could have gotten in there, but getting down was another story. Let's just say the five year old who overestimated his vestibular abilities was not the only person to be rescued from the climbing web that day.

The big kids got through finals relatively unscathed, and are handling new classes and grueling rehearsal schedules like champs.

Tiny is working hard on being brave, and even managed to order her own food at a restaurant this week. We sent out some info to her school this week, and while this may not be the best way for everyone to help someone who is struggling with selective mutism, it is the path that we have collectively decided to take. If you are so inclined, and would like to help, here's what you can do for her:

Dear friends, teachers, and family,

As some of you may know, our first grader has been struggling with anxiety and selective mutism. We are currently working with a therapist, as well as implementing various strategies to help her learn to live with these issues, and hopefully overcome them someday.

We are working on few "first steps" in the process of helping Tiny build her "brave muscles".

Step one for us is psychoeducation. This entails us sharing her story with trusted adults in her life, and letting them know how they can help if they are so inclined. So here is what we know so far: 

1) Selective mutism is not an oppositional/defiant disorder. In fact, what led us to this diagnosis, is Tiny herself telling us how very much she wants to speak, and how she is physically unable. She has said, "It's like my throat won't move." She loves to be included and loves to play - she'd love to offer her opinion, loves to sing, loves to read with silly voices, but at this point her body and mind aren't always allowing her to do that in school or in various other places that aren't home.

2) Tiny is not at the far end of the SM spectrum, yet she has a long way to go before she will be able to do things like ask to use the restroom in class, or ask to be included in a group activity or possibly even participate in certain classes.

3) She is also being evaluated for retained fear paralysis reflex. This could be what contributes to her "deer in the headlights" look when confronted with a stressful situation. It also creates difficulty with her gross motor skills, balance, ability to gage motion (ball games), and an inability to try new things when being watched or compared to others (especially physical activities).

4) For some kids, the effects of treatment are visible in about 18 weeks. For other kids it takes 2-3 years. We're optimistic - but also patient. She has been struggling with this since she was two.

5) "Please", "thank you", "hello", "goodbye" and "sorry" are some of the hardest words in the world for her to say. Not because she isn't grateful, or sorry, but because she knows she is expected to verbalize very quickly in these situations. Unfortunately, as cringeworthy as it feels to us as parents - these may be the last words to come.


These are ways that you can help if you'd like:

1) We are creating a "talking map" for Tiny. We are trying to discover who and where she is talking well, and where she is struggling.  If you receive this information and would like to help - simply letting us know if she has ever spoken to you and where (or where she hasn't) would be helpful. Often times she will be able to speak with somebody one on one, but not in a classroom setting. Or perhaps she can speak in some classrooms/neighbors homes but not others. We are trying to start treatment by adding people and places where she is most likely to have success, and least likely to feel additional pressure (that part will come later). 

2) IF Tiny has ever talked to you, or spoken in class, ordered at your restaurant, we are working on building her bravery in those areas. To do this, we've been challenging her to "forced answer questions" as opposed to "yes or no" questions, as this increases the odds that she will be required to say something. For example, "Would you like to use the jumprope or the basketball?" "Do you want the book about dolphins or fairies?".  If this seems easy for her, open ended questions are great too. But we are trying to eliminate the possibility of her using nonverbal cues to communicate.

3) She is learning how to be uncomfortable and still get the job done. For her - and for us - this is the worst part. Sometimes her brain does not want to cooperate when asked a question, and she may need a five second period to answer. This feels like foooorrrrreeeevvvvvvverrrr. It's painful to her, it's painful to watch, but it is also best for building her bravery. However, doing this in front of a large group will not work, and will likely cause a panic attack, but one-on-one, or with a very small group of kids is what we are working on.

4)If Tiny has NEVER spoken to you, or in your class, chances are she feels too overwhelmed at this point to break the cycle in the current situation. In this case, we've been working on engaging her without asking any questions. So we can still expect her to participate, without the pressure of talking. However, she may be able to connect with you if you say "hi" outside of the classroom/church/usual area. She can also engage with you in non-verbal ways such as carrying art supplies, helping decorate for a party, or feeding your hamster.  

5) When she does speak in public, we thank her for telling us. Tiny is really motivated to get her voice, and knowing that she's on the right track, usually gives her some forward momentum.

We are so lucky to have so many wonderful supportive people in our lives. We are so grateful to all of her teachers and caregivers and grown-up friends. We hope this doesn't sound like a directive on how we want people to interact with our kid - on the contrary, we trust you completely and admire what you do already. We just thought that the more people who know what's going on, the better chance the world has of meeting the brave, strong, fun chick we know Tiny to be.


4 comments:

Treats said...

If there is anything I can help with, I'm willing and happy to be a part of her journey.

j said...

Thank you - we're working on some interactive things for her - like walking into a store and buying something. I'm thinking you'd be a great start - I mean, unless you're gonna put a chicken foot in the bag or something . . .

Treats said...

I'll keep snakes and chicken feet for you.

j said...

You're a peach.