Q: Is Piper Jane learning sign language?
A: Kind of. Her poor speech therapist has worked so hard with her, and of all of her therapies, she has been the most resistant with speech. She has been doing speech therapy as long as she’s been in PT and OT. So yes, she is being taught sign language, but she isn’t really getting it. A few times we have thought she is signing something….”all done” or “more”…but it isn’t very consistent, so we don’t know if it is a coincidence or not.
Pippy has great therapy, and basically anything known and available out there has been tried with her. She has pretty severe delays in most areas, so a lot of times on the blog when it might seem like she’s not doing something she should be (“sign language is so easy and it makes such a difference!!”) it’s likely we’ve tried it/are trying it and poor Pippy is just not picking it up as quickly as we’d all like her to. We’ve (Me, Jake and Pip) been in this situation for a long time, so we’re pretty aware of what is available. We know about programs and therapies and surgeries, but thanks so much for your recommendations! Just try to remember that we are pretty experienced in this world of special needs by now, and advice/suggestions sometimes come across as condescending. I’m not saying to not email me if you have a great idea, but I’m just saying things like “When I read your blog I just can’t believe Piper hasn’t been taught sign language yet. It is so easy for small children to learn and she could benefit so much from it!” are a little bit insulting. Just because it hasn’t been written about, doesn’t mean it’s not happening. But like I said, I always appreciate genuine, kind insight. From the bottom of my sensitive little heart.
(thanks guys, and sorry that this sign language question has always kind of hit a nerve with me. maybe because i so so want it to work, and it just doesn’t seem to be, yet.)
Oh, I HEAR you! I have a child with autism and had have people say the most incredible things (“she just maybe needs a time out!” Be strict!”. Most are trying to be kind and helpful but, truthfully, once your child is 14 you’ve gone down or researched most avenues!
I’m glad you addressed this, I’ve often thought to myself that helpful suggestions, for all their good intentions, must be at least a little insulting – parents who lay awake at night going over every possible thing they can do to help their child are more powerful than any search engine or recommendation.
HIgh fives for you, Jake and your hilarious Pip – my niece made the funniest silliest little face yesterday and I thought who do you remind me of…Piper!! They seem like twinsies sometimes.
I questioned about the sign language, just out of curiosity, I hope we didn’t hit a nerve too deep.
]
I think that as long as you and Jake can understand Piper and visa versa, that is all that truly matters. As long as you are able to read her, make her laugh, know why she is crying, etc, etc that is what counts. [Like the story you told about her feeding tube being disconnected - one way or another she was able to express and let her mama know!! Which was amazing to me.
Seems to me that Piper is doing a fine job of communicating! I have a feeling she makes her intentions very well known, without speech or sign language!
You and Jake are such good parents…lucky, lucky Pip.
xo
The older I get the more I realize advice is usually worth as much as you paid for it. This probably makes me sound really stubborn and prideful, but unsolicited advice can be pretty obnoxious, even when good intentions are there. I guess it just depends on who it’s coming from and how they phrase it. I get it a lot from one particular person and sometimes I just respond back VERY sarcastically, “That’s SUCH a great idea!! I can’t believe I never thought of that!” And then roll my eyes…..
You are much sweeter than me.
I have read your blog for a long time now, I may not comment often but I read your every post. I must say that you have a very precious little girl there and seeing her little smile just warms my heart.
Kristie
A wonderfully gracious response, Reagan. You are amazing!!! I would have been less than kind…ha!
BTW-Pip is a total rock star!!!
I always read your blog with the knowledge that you are doing whatever is best for the little Pipster. You will receive no judgements from me! Thanks for sharing
Yo mind reader, I *just* wondered this question the other day but figured it had been tried and she must not have taken to it yet so I didn’t ask. The awesome thing is you have such great therapists that the whole “if at first you don’t succeed…” thing feels like the mantra of Pip’s life and certainly seems to be paying off as things are tried and tried. I mean, that girl is a walking, even if not yet talking, miracle child! I can certainly empathize with how hard it must be to want to communicate back and forth with her, and the sensitivities around the topic when you want something so badly and it just hasn’t quite clicked. I’m super-dee-duperly optimistic about this though and I hope you continue to be too!! Piper is so amazing and she has beat such crazy odds against her that I think she will continue surprising the world left and right. And even though she doesn’t use sign language or anything she DEF communicates! That girl knows what she wants and how to get it–I have seen it first hand! (And remember how that one day she didn’t “throw up” all over you when her mickey came out but warned you with her wide concerned eyes and kind of moving away? Yeah, she totally figures out ways to let you know what’s up. When you blobbed about it I thought “Such a smart little Pip-squeak!” She rules.). HAVE A WONDERFUL VACATION!!!!! XO
Reagan, it is very obvious to me that you and Jake have explored every avenue of care for your little Pip. Even if you aren’t blogging about it in direct words, your immense love and care for her is all over your posts. You two are amazlingly corageous and selfless and I admire you both so much for all you do. That sweetest little girlie of yours is one lucky lady!
I just read the blob with the assumption that you guys are doing everything in your power and knowledge to help Piper, and that because she is surrounded by OTs, PTs, doctors and nurses, she is probably getting the very best care and they are most likely exploring every avenue in the (relatively undiscovered) CCMS world. For anyone to assume they know better than Piper’s parents, therapists, and medical providers is presumptive and rude.
No matter how big or small your issues are, people will ALWAYS throw in their advice. My 4 year old has a several peanut/tree nut allergy and I’ve had random strangers tell me that there are tests that can be done by a Doctor to verify (like we haven’t lived w/this for 4 years and haven’t done every test out there). Oh jeez — I’ve never even thought to take her to a Doctor when she her entire body was covered in hives and her eyes were swollen shut … hmmmmmm. The ignorant comments people will say to your face (I imagine they can type even worse things!) are astounding. By the way, we did signing w/my daughter and the only thing she picked up was more … more snacks, more toys, more books …. more more more. I loved seeing Piper’s birtday pics. Super cute!!
What the fuzz is wrong with people? Pip plays outside, on the slide, riding shoulders, tapping, laughing, snuggling. Why sign? I seem to understand everything she is trying to communicate! DUH! Thanks for posting.
I try to live by the mantra “thou shall not judge” b/c ultimatley, until we walk a day in someone else’s shoes we have no idea what it is like to be them, etc…
I am always inspired and amazed with Piper Jane. You and Jake have really made a wonderful life for Pip. I love to see the pictures, the huge smile on her face and all the progress she continues to make. She loves her mama and daddy…Awesome! Thanks so much for sharing!
For what it is worth, I have at least two kids in my family with various developmental delays who learned sign language first, and in our cases it seemed like the sign language actually kept them from speaking longer than not, like it was being used as a crutch. At one point I was absolutely certain my nephew was playing us, because he thought it was more fun/got him more attention to sign than to speak – when I confronted him about it (hilariously, with a cookie as a bribe and his four year old self in my arms), he basically laughed his head off and admitted he could talk. So that was the end of the sign language with that little stinker.
I think anyone who can learn ASL should because it is a fun, fascinating and useful foreign language, and I am semi-fluent myself, but in my experience the usefulness/ease/miracle of babies/delayed kids using sign language is waaaaay overstated, so don’t feel bad or left out that Piper hasn’t picked up too much yet. She’ll do it if and when its useful to her, on her own timeline.
i totally get this and good for you for addressing it. its so hard to tirelessly respond, “yes we know, we’ve tried that” without getting snippy over time.
its funny, i read your blog and see pippy and i dont think things like, “hmm, how can they get her to do X” but instead im blow away by all the amazing things she is doing every week. your little girl is a star.
I get that too. My Chickadee’s condition makes it so that she is unable to use her hands reliably. Also, her vocal cords as well as her neurological ability to use both are affected. She has something to say, she just can’t. But she does use eye gaze and rocks her whole body to say yes to strangers.
I have a hard time with finding therapists willing to move on to augmentative communication for a tiny bitty thing that is only almost four. I’m so glad you have good therapists. And I’m also sorry for the ache it causes you in so many ways. But especially in the communication.
Sometimes I hope you look at the pictures and see how clearly she is talking about you. She adores you. Absotively. xo
you really have to take things with a grain of salt. when you’re putting it all out there, people tend to give so much unsolicited advice. having a blog like this where people are free to contact you and ask you any question their little minds can think up can be overwhelming, but that comes with the territory of what you are doing with your blog. take the good with the bad.
I am so glad you have access to therapists who keep at it with your little Pip. I am sorry if questions come across as insensitive and hurt your feelings. I think you are so brave and generous to share Pip with us. I am not sure I could do it (coward). Since you said we could ask questions, can I ask a follow up? Is her speech delay part of her overall developmental delay or is it caused by her having the trach? If her development was typical could she speak while having a trach? Google could probably answer this question for me, so if you’re too busy having a grand time in Spain, I will understand. Travel safe!
I am sure that is crazy hard when people act like they have this super idea that you surely just have not thought of — and it’s so obvious. I mean, if I taught my slow to speak, but otherwise totally normal son a few signs with no advice from any doctors, you have to think someone who LIVES IN A HOSPITAL and is cared for by professionals 24/7 since birth might have thought of it. *eyeroll*
Pip clearly has beaten so many odds to be the 4 year-old she is, and she has plenty more to beat, to be sure. I hope someday she will look you in the eye and call you Mama verbally or through signs. I’m sure she’d love to. For now, taps will have to do.
First of all I think Piper is adorable. I always look forward to your updates. I have been following your blog for a couple of years and honestly I don’t see Piper as a special needs little girl. When I first started to read about her was through another bloggers link I was curious and linked to your blog. My curiosity turned to addiction of watching her little personality grow with her. I see a little explorer who has learned to walk, go outside, ride on shoulders (not easy to do). I think she communicates in Piper style. She knows what she wants and how to get it. With all that that little Pippy has been through she deserves it too. I was so impressed with your blog about her pointing to her belly when her feeding tube became unattached and was so impressed. It was even more special that you were able to be there to share the moment. I speak of Piper to my family (they don’t read blogs) but I always say, “you know that little girl that I follow” – she did this today or that today. I am in awhh with how much you and Jake are involved in her life. The time that you spend and the effort you make to push her outside of her comfort zone you are such good parents. She is the lucky one. Hope you enjoy your vacation you deserve it. Be safe. Canadian Colleen
Sometimes, when I read these posts, the ones where you respond to people’s annoying questions….I want to swear. Reagan, this blob is for you document what’s happening in your life. You never have to explain. We are peeking into your journal as it is, who the H has the right to question any of it, or what you are doing. these are just little blips of what actually happens in your world, and if people haven’t figured that out yet, they are living in a fantasy world. I am probably your biggest blob stalker ever….and I know I barely know you, or your family. but thanks for letting me view some of the good times, and every once and a while you give us a little blip that knocks us in to reality. thanks. keep doing you
p.s i can’t believe you are having to go down this avenue again, first the form spring questions (btw super upset piper didn’t get the princess party she (I) was dreaming of.) and then the “just bring her home” stuff. you shouldn’t respond. none of us have ANY idea. sorry. really sorry
Wow! You answered that question a lot nicer than I ever could have! You have tact lady! Clearly, some people don’t! Hoping that you are having a great, fun, adventure-filled trip!
Reags,
I always love how you defend the fact that you and Jake are active participants in your daughter’s life. I can’t imagine how much you wish for her to be home with you, much less wish she could sign. I think you are a great mom (and Jake a great dad) and the only advice I have is keep it up! Oh and post more Pip pictures where she’s looking all intense/serious/cunning.
it makes me so angry for you when i hear about mean/condescending comments! it’s so obvious to me that you’re doing the best you can!
on a completely unrelated/superficial side note, i just bought the waimea dress from shabby apple. i first saw it on you and thought it was the friggin’ cutest thing ever. i’m excited to get it!
I love your blog, I am sorry your feelings get stepped on when people aren’t careful. Piper is obviously well loved and cared for, keep rockin out being her Mama!
totally get this one, reags. we keep trying and trying with moriah, but she isn’t really getting it either. it’s totally okay though because i know our girls communicate in their own ways =)
sometimes, i just get tired of all the therapies that m does have, and i dont have the energy to battle one she is resistant to…
but i will continue to pray for moriah, and now also piper, that they will both make progress with this…
xo,
victoria
Darling Reagan,
We are strangers. I was directed to your blob some months ago by a mama who lost her precious little in a tragic choking accident. She told us we had to read your blob because we would be amazed and astounded by this lovely couple and their equally lovely Pip. So, I don’t know you and have no place making suggestions one way or the other…nuff said a about that! I do, however, have an observation.
Yes, Pip has some obstacles and delays. She is beyond special and I mean that in the kindest way. For all the areas of gross and fine motor development, intellectual advancement, etc., where she has some room to grow, the one area where she does not seem to lacking is communication. It is so clear in the beautiful photos you so regularly post. There is clear and specific dialogue between the three of you. And it is beautiful. You are brave to do Q & A. So brave to share the way you do. So deserving of a little get away on the continent across the pond. Pip is a joy. She speaks the most beautiful language of all, love. And she does so quite fluently. I am sure no one meant any harm when the question was posed. But it was hurtful none the less. She speaks the language of love clearly and purposefully. We should all be so blessed!
Have a wonderful trip!
I totally get this too – it’s something we struggle with as well. Our daughter has an acquired brain injury, and as a result, no longer speaks. People often ask us about sign language, or ask us how Lola uses her ipad to communicate. The truth is, she’s just not there yet. We’re still hopeful that some day she will be – but for now, the comments are irksome (regardless of the intent, which is always good).
For having no words, they still manage to let you know what they want (most of the time) though, eh?
Keep up the good work!
I’m a speech pathologist working on my PhD studying augmentative communication strategies in early intervention for children with developmental disabilities. Have you looked at using an iPad with a communication app on it? It looks like Piper is good at attending to the small iPhone screen…so perhaps she would take to using it to communicate? I’m sure y’all have already looked at it but I just wanted to throw it out there just in case
) Take care!
Hi, sweet Reagan! I can’t tell you how much I appreciate having this spot to come to! I am a member of that “parent of a special needs child” club. My son is now a young adult. We are having some difficult times, and coming here is such a lifter-upper! You have my same goofy sense of humor, so I love how you make me smile. I also love how you live such a full life, and most of all I love how you share your precious Pip with us. I can’t tell you how much that means to me. Thank you so very much. Sending you a big hug.
Your graciousness is awesome. And I have to say, it’s so funny–I have two kids and they are SO different. The first glommed on to sign language and I was like a zealot about it. So awesome! So fun! So great! So easy for the kid to pick up! Everyone should totally be doing this!
Then we had our second. Hah! He scoffed at sign language and I ate crow and said a silent prayer of apology to all the people I’d tried to boss in to it. As with EVERYTHING about parenting, after air and nutrients and love, every kids’ needs are different. But it took me having two completely different kids to realize it. I’m so glad they are the same gender or I’d probably chalk it up to that…
Anyways, rock on and hooray for you, realizing that most people are really coming from a place of love and wonder.
Hang in there Reagan. I have a 6 yr old special needs adopted daughter (fetal alcohol effects) who has many delays. I am used to hearing “have you tried this?” too. It’s hard to hear sometimes because as you said, just because we don’t talk about it doesn’t mean we haven’t thought about it or tried it. You are a good mama and you love your girl. You are doing the best that you can do.
I know I love seeing sweet Piper’s face and antics. It makes my day. Hope you are having a fun trip away. Can’t wait to hear about it.
Molly
Oh and I like Linda P’s post, it makes me feel the same way.
You always respond so eloquently to the messages you receive. I would have such a difficult time with that. I might even go so far as to tell those people to buzz off. I mean, here you are sharing with complete strangers (for the most part) your beautiful girl, your inner workings, your husband and family…who are we to assume you are or are not taking the best care of Pip! I can just tell how much you care. Since I started reading your blob (when CJane linked to you), Pip has learned to walk! She’s gone outside…I don’t like grass on my feet either darnit! And she is totally not afraid of heights…spending all that time on TALL Jake’s shoulders!! Amazing if you ask me. Thanks as always for sharing with us your wonderful family. Just can’t get enough of that Pip and her poking!
http://www.etsy.com/listing/67973168/mermaid-tail-and-matching-crown-choose since she got to be a princess for her birthday, can she please be a mermaid for halloween? dang, i know. i am needy. I like this one best. hahaha I should just get my own Pip, and then i won’t have to be so needy.
I hate that feeling. The one where you feel like people think you are not doing a good job as a mama – for whatever reason.
Don’t feel that feeling, ok?
You are doing a great job. You love your child. We are lucky you share the pippy pipster with us.
I am also a mama of a perfect child who chose me to be his special mama.
Like Pip, he is not like anyone else. Over the years I have tried being polite, being obnoxius, being sarcastic, being angry, and after 8 years I am settled into a sort of an “ignore” phase.
It is working out really well, lol.
He is 8 but developmentally just a toddler. Girl .. we get the looks and comments too! Just the other day I had another mom ask me “what do they think he is going to be like he gets bigger?” Seriously. My other most hated question is “What is wrong with him?” I always want to look surprised and say “Nothing….What do you mean?”
Hang in there!
I’m here to tell you, as a speech therapist, that sign language is hard. It’s a language, so if you have a language delay sign language is not going to come easily. You and piper are amazing and keep on doing what you are doing!!
I luv you x
i almost barfed all over the keyboard realizing that people give you suggestions like that.
i’m sure it was all with good intentions… but sheesh.
i’m not in a good mood, so i probably shouldn’t comment. but here i am…commenting negatively. sorry for the bad vibes.
You seem like an amazing mother. I have been reading your blog and have never commented (on any blog before). However, I’d like to think I understand how people’s suggestions hit a nerve with you when it comes to Pip’s therapies, etc. I have a great friend that has Neofibromatosis (Genetic Tumor disorder). It affects half of her face but she was born that way and is a strong Christian who does not feel sorry for herself. She is a coworker of mine and when I’ve gone out with her for drinks, I am amazed at how bold and ignorant(?) people can be. Many times people offer to give her the names of a doctor friend or they’ll come up and tell her they don’t know how she does it. She manages to hold it together and try and keep a christian attitude…however it’s hard and can be frustrating when you’re out just wanting to have a good time.
Anyways, just remember that these comments (hopefully) stem from people wnating to help and not knowing any better, unfortunately.
You are an amazing parent! And Pip is an amazing little girl!!!
{{{hug}}}
Your blog is inspiring.
I just wanted to apologize if my suggestion to signing time was offensive. I truly was not giving advice I was just making a suggestion of a quality product. There are so many products, advice and gimmicks out there just thought it has worked for my family and many others and I wanted you to know about it. From the sounds of it every product on the market has been tried. Well, I wish you both well and I think you are a wonderful mother, keep up the great work with spunky fun Pip.
Jack & Reagan, I just can’t help but think I was the one that wrote about sign language being so easy and making such a difference. I posted above already but I can’t get it out of my mind. I am truly sorry that was not exactly what I meant (if I wrote that I just don’t remember). Mis-communication is one of the down falls in the techno savy world; in my opinion. I truly am sorry for being offensive that was not my intentions at all. I think most people want to help and suggestion things that work for them; I believe we are all here for a reason and one of them is to learn and grow from each other. I truly don’t think “people” are out there intentionally offending people or making offensive comments on purpose. I am very sad today truly sick to my stomach about the referenced comment. I try to be sensitive to your situation.I have been searching through the archives trying to find my comment on Signing Time I just can’t find it. SO, again if I was the one who wrote that mean statement, I am sincerly sorry
dang it I meant to type Jake not Jack wow I am really doing a great job today, I just feel so bad.
There’s a lot of apps out there now for autistic kids that are available on the iPad – since Piper seems to enjoy using it (love the picture of her curled up with it in one of your more recent entries), you might want to look into some apps that might help her have some fun/communicate in different ways. I know she’s not on the spectrum, but they might help, you never know. There’s tons that technology can do now to lend a helping hand, so though I doubt Miss Pip is truly silent, they might help her be a little more expressive
.