“I Can’t Even Tell She’s Autistic?”

10.07.13

I have heard this more during the past six months than any other statement/question by friends and family in regards to Cali. Three years ago I would have been shouting from the rooftops with extreme joy to here these words! But now I am actually hearing these words and I feel the need to respond by saying, “Oh she definitely is still autistic.” Why??

 

Why not just take their words and be grateful for their acknowledgment. Tell them thank you. Because after all, we have worked every single day for the past three years to get to this point.

 

Maybe the question actually makes me a bit sad because Cali being autistic is a part of who she is, so people not recognizing the autism means a part of Cali is missing. Isn’t that ironic! Most parents who first find out their child has autism talk about how autism is the very thing that takes away from their child. Interesting!

 

Or maybe I have in some strange way found security in knowing she is autistic. When people ask the question I almost feel a bit lost! What in the world would we do with out autism!!

 

But here’s the thing. Even when I hear this from friends and family, I know that Cali is and always will be autistic.

 

Dawn, Cali’s speech therapist came by last week and handed me a packet of assessments. Some for me and some for her teacher. As I was filling out the forms I couldn’t help but smile.

 

The smile was a proud smile. Of coarse Cali is autistic, but most of the time you don’t know because she has learned to mentally function amidst her struggles and tendencies to think differently. You wouldn’t know because most of the time she uses the coping strategies and techniques she has learned to help her  physically function at a balanced level. You wouldn’t know because we help her regulate her emotions. You wouldn’t know because most of the time she remembers what she is learning at play group therapy or P.L.A.Y. Project therapy.

 

Take all these coping strategies away, fail to remind her to regulate her emotions, stop the programs to help her learn certain academics, or take away any of the therapies and you will quickly learn that yes indeed she is autistic.

 

I’ve said it before, but I don’t mind the label. I don’t even mind if people can tell she is autistic. This is a personal perspective of coarse. I do not in any way write these words in hopes that other moms will feel the same. To each their own. But for me, knowing she is autistic helps me continually know how to help her grow and learn.

 

I loved filling out the assessments Dawn gave me. It reminds me that, yes, we still need to work on:

- Not becoming easily overwhelmed or overstimulated by typical daily activities.

- Not getting caught up in the small details of a task or situation and consequently missing the main idea.

- Not getting upset when activities change.

- Responding to name when being called.

- Making eye contact when having conversations with others.

- Being able to find things in a room or play area even when given specific instructions.

- Attention span.

- Being aware when she preforms a task right or wrong.

- Staying on the same topic when conversing with others.

- Remembering to follow through from a request given by others.

- Overreacting to small problems.

- Mood staying consistent and not frequently changing.

- Being aware of how her behavior affects or bothers others.

- Not getting constantly side tracked during activities.

- Becoming frustrated because she forgets help is available if she would just ask.

- Strengthening her fingers to be able to write.

- Strengthening her shoulders, core, and back to create the strength in her fingers!

- To name a few:)

 

If only I could have assessments to fill out on Ava!! Cali fortunately HAS the label. Poor Ava doesn’t get the detailed attention she needs at times. A busy life tends to overshadow the struggles she most certainly has as well. It’s kind of hard to ignore something when it is staring you straight in the face (i.e. an assessment pointing out your child’s weaknesses and strengths!)

 

Now, at the end of this post, I know what to tell people when they say, “I can’t even tell she’s autistic.” I should say, “Thank you!” Not a thanks because I’m ashamed if someone DOES notice, but thanks because it reminds me how hard Cali is working each and every day to put to practice all she has learned.

 

Way to go Cali!!!

 

Here is Cali giving her rendition of the movie Thanksgiving Turkeys to a new found friend at the sewing store…clearly Cali has no struggles with finding new friends!! 

 

 

 

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comments

  1. Oh man, I hope I get to where you are at some point. I am so far from that perspective. I still feel like I would change it, if I could. I still wish I could make that part of her go away. It still frustrates me when I can’t get her to stay on task, pay attention, sit still, focus, learn something new. It makes me feel sad, and I feel that her autism holds her back from learning and that she’d be better off without it. These two perspectives (mine and yours) probably just demonstrate the experiences of a Mom just starting on this journey and one who’s a few years down the road. Hope I find myself where you are someday. I don’t want to stay where I am for too much longer.

    • I think I finally got to the point where I realized Cali just happens to have a label and other kids don’t. But the truth is, some kids who don’t have a label are affected by bigger tantrums, less focus, and so forth. Their parents don’t have a label thrown in the mix that makes things more confusing and complicated and therefore don’t worry like a parent living with a child who does have a label. It can be a game changer with a label, but it also doesn’t have to be. Make sense??

  2. It does, it would be far worse to not have the label, it’s brought me a lot of peace of mind and helped others have more love and patience for her. I was telling my friends that I really pushed for the actual diagnosis, and one friend was like “what does the label give you, just peace of mind?” And I was like “no! It gives me THERAPY!” I feel bad for the parents whose children are undiagnosed but would benefit from services, that would be a much harder road to travel. I’m grateful for the label, but at the end of the day it doesn’t matter, Evie just is who she is, and I still have my days (like today) where I wish I could make life easier for her and make some of her struggles go away, autism or not. I always love your perspective. Seriously, keep writing.

  3. What a great post Chelsea! I admire how far you guys have come on your journey and how well you’ve adjusted to the “life of autism”. Your strength and perseverance have played a major role in Cali’s progress!

  4. Oh my goodness LOVED this post! And guess what?! Every single one of the things that Cali is still working on, I mentally checked off for Gavin! LOL … Even with all the hard work they do, the details of Autism are always a work in progress aren’t they? I love what you said about Ava … That is Noah!! Haha … And I am so very proud of Cali for all that she has accomplished & continues to accomplish!!! They are spectacular kids, and I know what you mean about how your perspective on Autism changed from when she was first diagnosed! I feel the same way! As much as I hate to see him struggle, Autism isn’t as scary as it use to be. It’s a unique way of thinking and once he can learn to use it to his advantage and learn the coping strategies more effectively, there’s nothing that Gavin, Cali or any of these incredible kids can’t achieve!! Ok, rant over! Haha! Have fun in Texas girl!!!!!!

    • Seriously when are we going to meet up?! Why has this not happened already!! I can remember when I started this blog and thought how amazing it would be to be able to connect w other moms. Connecting w you has truly been one of my most cherished parts of this blog! Xo

  5. Right?!?! It’s my fault! Ever since Gavin started therapy, that’s all we do! I never see anyone! I don’t even go out with the hubs! Now a baby?! It will happen though! I just love you already!!!

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