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jkpenney

Babywearing Educator, Parent, Advocate

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Autism Spectrum Disorder

Progress or Lip Service?

Autism Speaks, the largest and most well known autism resource, has always been terribly problematic. Their mission statement speaks of hardship for caregivers and advocates for “curing” the world of the “global health crisis” that is autism. That is, until today. 

This is their new shiny new mission statement:

“Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the lifespan, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of autism spectrum disorder; and advancing research into causes and better interventions for autism spectrum disorder and related conditions,” reads the update. “Autism Speaks enhances lives today and is accelerating a spectrum of solutions for tomorrow.”

This is a huge step forward, that is if they put their money where their mouth is. A mere 4% of the A$ budget is directed towards family services. Only 4% goes to actually helping the families and individuals they advertise as so helpless and dire. 

How will the 35% of their research budget now be distributed? Will their fear mongering fundraising language change? Will they acknowledge the many voices of adult autistics and stop implying that neurodivergence only occurs in childhood? That once an autist reaches adulthood and can speak for themselves, they no longer matter in the discussion about autism?

Maybe A$ is finally listening to what the #actuallyautistic community has been saying for ages. They do have a new president, recently announced the passing of one of their founding members, and appointed two autistic board members for the first time last December. Maybe they will be better. Maybe not. Time will tell. 

Until then, check out these sites for your autism resources instead. 

Autism Self Advocacy Network (ASAN)
Autism Women’s Network
The Thinking Person’s Guide to Autism
National Autism Association

Parenting Autistic Children with Love and Acceptance
And for more information on why Autism Speaks is problematic: 

Why I am Against Autism Speaks (and you should be, too)
There are several other fantastic resources on this topic within that link. 

Sensory Friendly 

Today we went to a sensory friendly film hosted by AMC Theaters. It is a great fit for us as there are no behavioral expectations, the room isn’t pitch black, and the sound isn’t overwhelmingly loud. E and A actually made it through the entirety of Finding Dory without breaking down. Overall it was a very pleasant experience.

Afterwards we walked through the mall to the bookstore. The girls enjoy this but the hustle of everyone around us can be overwhelming for E on busy days. So today we tried something new. We had brought noise cancelling ear protection for a friend’s son during the movie, and walking around the mall seemed like a perfect time to test them with E. They worked fantastically.

We made it through an entirely too long first half of the day with out a bit of tears from E. A was another story, but well I did disregard her nap time in order to go lipstick shopping. I’d say the day was quite successful. The girls rocked the movies, we found a great way to make public spaces more manageable for E, and I found a really promising new liquid matte lipstick. Win!

E playing with a trainset in a bookstore. She is wearing a black ear protection headset, diy sensory chew jewlery, and a flowery navy dress with pink.
E playing with a train set at Barnes and Noble

Babywearing As An Autistic Parent

Babywearing is a fantastic tool for parenting an autistic child. It allows us to meet the world where it is without fear for safety in crowds or over stimulation. Both are still a factor, but wearing E makes them easier to manage. This is all really great, and I’ve touched upon it before in the post titled Sensory Overload.

Jade wearing A in a rainbow buckle carrier. Both are looking at the camera smiling. E is sitting next to them with a huge grin at the camera.
Jade, A, and E on the train at Busch Gardens
But how does babywearing affect me as an autistic adult? It’s actually helped me in a few ways as a parent and as an individual. As a parent, it makes going out seem possible. Outings are overwhelming and exhausting. I typically limit myself to one errand a day as more than that has me burnt out for days after.  When I need to take the kids with me to do these errands, even thinking about the day’s tasks feels like more than can be done. Babywearing transforms these mountains into manageable tasks. It does this because it puts the  children in a visible, contained space. They climb out of cart belts, let go of hands and disappear, and E even figured out how to lift the back panel of a cart to climb in and out. When I wear them, I can focus on the tasks without fretting about the children’s safety, thus lessening the anxiety that surrounds it.

Babywearing also helps to satisfy E’s need to touch me while considering my adversions to being touched. It’s really difficult to remain present and kind with E when she is constantly touching me. I don’t like being touched and honestly half the time it makes my skin crawl. Wearing her gives her that close contact she craves without it being focused to the surface area of her tiny hand. This makes it significantly more bearable.

As an individual, babywearing helps me to disengage with the surrounding public. You can’t politely stare at your phone in crowded gatherings. You can, however, disengage by cuddling your kid. I can go out and be social without being forced to maintain eye contact, small talk, or acknowledging the discomfort that comes with standing close to too many people. This is especially good because I don’t want to be antisocial. I enjoy hanging out with friend and forming new relationships. The process to it all can just become terribly overwhelming and taxing before it does for others.

Overall, Babywearing is a win for everyone. The kids are happy. I’m happy. And strangers are happy that they don’t have to bear through awkward small talk. Cheers all around!

A close up of Jade and E dressed for bed. E is in a teal soft structured carrier on Jade's front. Both are smiling at the camera.
Jade and E babywearing before bed

Clarity

Today was part three of the three part ASD assessment I started a while back. Part two was the actually assessment which covered a plethora of things, including an IQ test. My only commentary on the second portion was “wow, they sure ask random questions on an IQ test!”

I can now say with absolute certainty, I am autistic. Official diagnosis is Autism Spectrum Disorder (ASD) Level 1, previously referred to as Asperger’s Syndrome. As Casey says “this changes nothing. You’re still the person you’ve always been”, and that is quite true. But that doesn’t mean there is no benefit to having a diagnosis.

Knowing brings clarity to my life. It explains my awkward and sometimes brash mannerisms and speech. I better understand why emotions have always been difficult to express even when I have  many of them. The challenges forming close relationships aren’t just because I’m socially inept.

I am glad to have completed this journey. It’s given me insight into myself and is likely to continue to do so. Welcome to a new chapter of my life. I am excited to see where this goes.

A close up of Jade and E. There is a large rainbow infinty sign overlay to show support for autism acceptance.
Jade and E supporting ASD acceptance

 

The Many Outfits of E

In our household, we’re all about allowing self expression. The girls can decide on their own look for the day if they choose. For the most part, they’ve been without an opinion. Unless you count A’s attempts to wear every article of clothing in the house every day.

Typically, E would only care that she had a jacket, hat, and shoes. Otherwise whatever I grabbed that day was fine. Lately she’s all about picking out her own clothes. The one continual theme is dresses and hair accessories. Mostly she just wants to be a princess all day, every day. This is probably my favorite stage as I adore all things Disney princesses. Her word for princess is also “Ariel” after her favorite mermaid princess turned human. A great side effect of this stage is that she’s working through her sensory adversion to having her hair handled just so she can have it accessorized.

I love watching her grow into herself. She becomes more amazing each day. Plus, who doesn’t enjoy a dinosaur mermaid hybrid? (She even roared at her sister when she got close for good measure.)

 

Self Expression 

One of the most amazing things about E using an Augmentative and Alternative Communication (AAC) device is how much her personality has grown since she could express herself without limitation. Most people don’t put much thought into how they communicate with others. For me, I was the same. I never thought about how difficult it is to navigate social situation if you don’t have verbal words to interact with others. E has shown me a new way of living and taught me a new depth of empathy for others differences. Before her it was something I heard about but never encountered so never gave it much consideration.
Back on point, AAC fostered an explosion in E’s communication skills. She can now greet friends by name that are listed in her device and confidently say hi to those who aren’t. She can request each item she wants for breakfast, show sympathy, read along with books, and express her emotions in an understandable way. As a bonus, her verbal skills continue to go exponentially as she repeats after her device with each selection. Proloquo2go has been an absolute game changer.

One of my favorite changes I’ve seen since implementing AAC is the growth of E’s individuality. One thing she adores is putting on makeup. Lipstick makes her ecstatic. This morning I came into the room to her pressing the “lips” icon on her device. She then led me by the hand to point out my makeup case and back to the iPad to say “lips” again.

Makeup in hand, E proceeded to prepare her face for the day, complimenting her twirly dress and hair clips she also picked out. (And loves to pick out the same dress and clips each day.) It is amazing to watch her personality grow every day. I’m excited to see how she continues and which directions she’ll take.

A Different State of Normal

Today a good friend reminded me of something very important as a special needs parent. As a parent of two neurodiverse children, she and I compliment each other well and sympathize with the different challenges each of us face. We were talking about our days and she pointed out the following:

It wasn’t a hard day. It was a normal day. I just have to quit expecting our day to be like any other parent’s normal day.

This was like a lightbulb. This is OUR normal. Tantrums over challenged communication is not a hard day. Meltdowns and hiding under a table because a neighbor is trimming his hedges is normal. I need to stop expecting neurotypical behavior from my neurodiverse day child. She is exactly who she should be. It’s me who needs to alter her state of mind.

 

 

A New Road Along An Old Journey

Today I started the three part process to officially determine whether I am on the autism spectrum or if I just have autistic tendencies that cumulated into something more in my offspring. 

There is much support for the idea that autism has genetic origins. I never really thought about defining my quirky behaviors much before starting this journey with E. I was voicing my obstacles to my friend, the same friend who always points out E’s progress. And she asked me if I ever considered the fact that I might be autistic as well. That was a lightbulb moment. That question sent a new line of thought in motion. It made so much sense. Then again, I don’t struggle too terribly. I’ve adapted and can copy societal behavioral expectations. It’s probably nothing. So I put off delving further down this road for months. 

The more I read, the more I considered my friend’s question. It would definitely make sense if I am on the spectrum. Enough procrastinating. I am going to find out definitively what the answer is. So today I met with a psychologist. It will be another month until the too many hours long assessment. I considered waiting to mention it after I found out the results, if the results were positive. But I feel that isn’t really in the spirit of autism acceptance, to hide this journey. 

Hello, I am Jade and I might be autistic.  

 

To The New Special Needs Parent

Welcome! I’ve been a member for probably all of a minute in the Internet world. I’m no where near a veteran of this fight, but this is what I recall feeling from the start to now. 

1. Take a breath. 

The moment E’s speech therapist mentioned having her evaluated for autism, my mind went into hyperdrive. There were so many steps to accomplish, so much to research. Where do I start?! Those words were just the start of a very long road with many months long wait lists to see specialists. I hurried to get things done to sit around for months waiting for the next step. There’s time. Breath. 

2. Confusion is normal. 

When the Developmental Psychologist confirmed the diagnosis months later, I just sort of hit pause for the day. People would ask, “how do you feel about it?” And I didn’t have a response. It was a relief to finally get to the end of this leg of the journey. It was worrying to consider the future. I still have a hard time imagining E’s life past kindergarten.  It was numbing to acknowledge that this is real, this is our normal. Not speaking, sensory adversions, sensory seeking, meltdowns, it’s not just a stage she’ll grow out of. Maybe, or maybe she will. Nothing is guaranteed. 

3. Accept help. Ask for help. 

It’s easy to feel isolated from your friends. They aren’t living your day to day. Some may not get it. But I promise many will try to. Open up to them. Talk about those emotions you can’t define, voice your concerns. They are here for you. Don’t distance yourself. Accept when they offer to take the kids for the day. Meet them for those play dates. You don’t need to be an island. Take the hand they are holding out. 

4. The Internet is a double edge sword. 

There are so many resources and support groups. I find the special needs parenting groups on Facebook to be helpful communities for bonding, venting, and information. There is also the other side of the coin. Some communities are not helpful. Internet trolls are vicious. Inaccurate, but vemenately assured of themselves articles make you feel like a failure or that the future is hopeless. The Internet takes weeding out to find the good. But once you find it, you’ve found your new home away from reality. It’s worth wading into. 

5. Remember to enjoy life. 

When we first started E in therapies we were in and out of doctors offices and seeing one therapist or another four times a week. Even when we cut down to two hour long sessions a week and an inclusion preschool, it was still exhausting to maintain with all the other planned activities. At one point, I had to stop. We reduced the therapies and stopped the scheduled activities. I was exhausted. E and A spent far too much time participating in structured play. I forgot how to just enjoy sitting still. It had probably been eight months since I’d last read a book for entertainment purposes only. 

Now that we’re keeping a more realistic schedule, everyone is happier. Better still, E has been developing into her own person and growing her linguistic skills at the same time. Every time she acts out a movie scene my heart soars. Who ever said tv doesn’t teach you anything has never experienced a limited verbal child yell “go!” along with Frozen

6. It gets better. 

Sometimes I would wonder what will happen. I can’t predict the future, which is frustrating as I prefer to plan everything. Each time a friend of mine sees E after a month or two of not, she always comments on how amazingly far E has gotten. “She just said hi!”, “she’s playing with the other kids!”, “she is doing so great!” 

I am with E every day. It’s difficult to celebrate the small growths as sometimes I just don’t notice them until someone else points them out. When I stop and actually look back at life before we started this journey to now, I can’t help but feel joy. Absolute joy at the resilience and determination of my little girl. She’s already come far and she’s just going to go further. 

So welcome, welcome to this wonderful and unique world. Remember to enjoy the view. 

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