Friday, October 14, 2016

Special Needs Spotlight || Susannah


My name is Molly and I am the mother of two little gals and wife to a tall fiddle player named Brian. I sell vintage clothing and have a small handmade line on my website squashblossomshop.com. We are almost all moved to California after living in our old farmhouse outside of Austin, Texas for 10 years. Brian is completing his final semester of geology studies at Texas A&M and the girls and I are staying with my mom outside of Sacramento until he joins us in December. We love to camp and road trip and play music. Most days you can find me and the girls in the garden. Our youngest is Louise Marguerite. Lulu is 17 months old. Her big sister is Susannah Gayle and we call her “Zuzu” for short. Zuzu turns 3 this month. She is wild and free and happy. She does not talk but communicates with us in her own way. This July she was diagnosed with autism. 

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Miggy: Welcome Molly. We've been Instagram friends for a while and I'm so glad to be featuring you and your sweet family today. Your sweet and beautiful daughter Susannah is autistic. Can you take me back to the first signs and symptoms when you suspected something wasn't quite "right" with Susannah? How long did it take you to get a diagnosis and do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?

Molly: Susannah has always been driven and independent. I remember her stacking up boxes and climbing up on them to get things off of shelves or tables from the time she was about 9 months old. We chalked it up to her stubborn determination and desire to do things on her own. Around the time she was 17 months old when her sister Louise was born I began to be more concerned about her lack of speech. Everyone assured me that children develop at their own pace but I knew in my gut that there was more at play here. Along with her lack of words she also rarely responded to her name, never pointed at things and didn’t look where we were pointing. Her eye contact was not great either. She has always been able to communicate quite clearly her needs- she drags us around by the hand to show us what she wants rather than ask for help. We took her in to the University of Texas Speech and Language Department at 20 months and she was diagnosed with a mixed language disorder- in a nutshell her receptive and expressive language comprehension was very off. Where most children that age would be able to follow simple commands or requests, she did not and for the most part still has difficulty interpreting what we are saying to her. The more I researched the more I knew in my gut that she would be diagnosed as autistic.

That was last summer, 15 months ago, and I would be lying if I said it wasn’t a devastating realization. There were many dark days and being around “typical” children was especially difficult. We didn’t know how to talk to people about it or what to say. We are generally very private and autism is not an easy thing to hide. We avoided parties and play dates. Invitations were rarely accepted and when we would attend a function it was an exhausting feat. She has no interest in playing with the other children and is quite happy doing her own thing. Adults would try to engage with her and when they couldn’t get her to connect with them we would make up some excuse about how she was tired or she was having a crabby day. The truth was it was isolating. We stopped accepting invitations all together for awhile- it was just too painful.

As the days moved forward, the light came again. I began to see her differences from other children as incredible, really. She looks at every single thing in an amazing unique way that nobody else could dream of. She often will dance around to silence and smile and laugh and I wonder what is going on in her little head and hope some day she’ll be able to tell me. Instead of hiding out we are now always on the go. She loves being in the garden and watering her plants. She loves to road trip and camp with us and swimming in the river is one of her favorite things. She eats 2 whole avocados a day and her only “lovey” is a stuffed seagull named Seymour. Her favorite song is Tchaikovsky’s “Waltz of the Flowers” and her whole face lights up when she hears it begin. She loves when we play music for her. She loves hiking around. Her favorite book is “A Snowy Day” and I read it to her through her crib the same way every night. Here’s the thing: I had always hoped that my children would someday be different and unique and unafraid to stray from the pack and I finally realized that is exactly what we got… she’s magic.

We were hesitant to get her officially diagnosed because we never wanted any labels put on our children that would potentially shadow them throughout life. We decided to go forward with the evaluation so that she could access all of the services necessary to help her progress. Her official diagnosis of autism (moderate/severe) came in July and it was not a shock to us at all. I’ve heard people say that their child’s autism diagnosis was a relief or that it was devastating. For us, it was confirming what we already knew. To us she’s not autistic--she’s Susannah.
Miggy: As with most special needs there is quite a large spectrum with autism (I recently saw this cartoon that I thought was a brilliant way to visualize the autism spectrum FYI). Can you explain in what ways autism affects Susannah and how her needs affect your day-to-day life?

Molly: Autism is a very broad spectrum indeed and each child has their own unique challenges and beauty. Some therapies will work well for one child and not another. We are constantly working and finding new ways to help her. We’re always talking and naming every object or situation. Everything she engages in is turned into a lesson. For example she loves throwing rocks in ponds so I count "one… two… “ and then pause until she signs or gestures or vocalizes to throw the rock in the water. I sing to the girls all the time and it’s one way we’ve worked on Susannah’s eye contact (which has improved so much!). I’ll sing a song she loves in the garden and stop before I get to a part she really likes and she has to look in my eyes for me to continue the song.

Susannah has speech and occupational therapists working with her often. We’ve seen a lot of progress with her vocalizing and interactions since starting at an occupational therapy gym. About a year ago I started noticing how vocal she got after I bounced her on my knee or we danced or spun around. Occupational therapists work with her through a variety of sensory therapies and movement and sound and I can see how this will be key to unlocking Susannah’s speech and connectivity issues.

Our typical daily challenges involve Susannah always wanting to be outside--heatwave or freeze, rain or shine. She doesn’t understand when we tell her we can’t go out at that moment. She gets very upset and frustrated and we have to attempt to redirect her to another activity indoors which is a difficult. She is truly a child of nature and is stressed indoors. We stopped having a TV in the house 6 months ago too--an exhausting decision we knew was right for us as Susannah was connecting with the screen and not with real life around her. Now the girls get to watch their favorite shows (Sarah + Duck, Kipper, Peppa) together on the iPad when we are driving which is a special treat for them and makes traveling a breeze.

At bedtime Susannah goes in her crib quite easily but takes 1-2 hours to settle and finally fall asleep unless we are able to do a lot of swimming or dancing or running around prior to bedtime. It takes a lot to exhaust her and I love peeking in to see her in a headstand babbling to her stuffed seagull.
Miggy: What are the biggest worries you face for your Susannah? Conversely, what are your hopes and dreams for her? 

Molly: My biggest worry used to be that she wouldn’t have any friends. Or a partner someday. Or children of her own. I’ve grown to see how genuinely happy she is and what a zest for life she has. She will find what makes her happy and that’s all I want for her. Everything else was my own insecurities and fears. If she wants friends she will have them and if she wants to be a scholar or a musician or an artist she will manifest it. She is the most determined person I’ve ever known.

My biggest worry right now is finding the right school situation for her. Her in-home speech and occupational therapy is dropped this month when she turns three so there’s a lot of thought given to the next step. The State + our regional center have their idea of what’s best for her and we have another idea. I want her to be outside all day in the environment that feels good and natural to her. I want her to work in a garden and swim and play music and be allowed to discover what she wants and how she learns best. There’s not a huge variety of educational options for children with these special sensory and environmental needs and I hope to change that.

But my big dream is for her to talk. It’s pretty basic for most parents but that’s the big one. I want her to tell me about everything she sees in her mind.
Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Molly: Oh yeah! We often begin a hike or go to a park and have to stop and turn around because there is a pond. Susannah is constantly seeking proprioceptive input (deep pressure) and swimming is her favorite activity which satisfies this need. She wants to immerse herself in any body of water--preferably naked--and doesn’t understand why we won’t allow her to, say, swim with the koi at Fairytale Town in Sacramento? Or jump in the giant fountain at the park? She's left many a public place with big tears when she wasn’t allowed to take a dip.


Miggy: Having a child with an "invisible" difference comes with its own challenges, therefore how can people best approach or respond to Susannah? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Molly: I don’t want people to pity her and I don’t want them to pity us. There’s nothing to feel sorry about. She’s happy and loves life and is unaware of being different from other kids at this point. My sisters both have 2 kids and they are so wonderful with her--filling up birdbaths at their houses when we come over and collecting rocks for her to toss in because she loves to watch the splash and studies the ripples they make. They are always trying to include her in their games and are so patient. To them, she’s just Zuzu and I love that. I hope kids try to include her in activities and invite her to join them and understand that her distance is in no way a sign that she doesn’t like them or that she wants to be left out.


Miggy: I know from firsthand experience what a special role siblings can play in your special needs journey. Is there anything you’d like to share about your other daughter and her relationship to Susannah?


Molly: Louise is rad. She’s really the coolest. She is obsessed with Susannah and is completely undeterred by the fact that Zuzu usually does anything to avoid playing with her. She loves her so much with her big old heart and Susannah will sometimes go over and kiss her on the head when she thinks nobody is watching. Louise is a tough cookie like her sister and now that she’s starting to talk and play with the same things as Susannah I’m noticing a change in their relationship--like Zuzu is finally beginning to SEE her. Our days are mapped out by Susannah’s therapy appointments and Louise has been so flexible about it all. I try to be very mindful about her and how much of the focus of our family has been on Susannah’s needs and make sure that Louise gets plenty of her own special time with me too.
Miggy: I know you're still in the early stages of this journey, but so far what is the biggest lesson you’ve learned as Susannah's mom?

Molly: “COMPARISON IS THE DEATH OF JOY”. Mark Twain said it and I lived it for some time. By being Susannah's mom, I’ve learned to stop looking around me to see how quickly some other child is developing and what accomplishments they have achieved. It’s truly a joy kill. I don’t think about how many words she can piece together in several languages like some kids her age. Or if she can count to 20. These things no longer cross my plane of thought. She’s taught me to be present. To listen and watch for what lights her up and then pour every last ounce of energy into growing that. To love this difference and find all the ways her unique channels of thinking and doing things will benefit her and the world. I’ve learned that there’s nothing embarrassing about laying on the floor of the playground because it feels right to her and she wants me there beside her. I’m forced to get off the bench and the couch and the chair at the party and be present all the time. It’s exhausting and there are moments--God knows there are moments every day that I wish life was easier. I may not be doing everything perfectly but I never ever want to go to bed thinking I didn’t give my all for these girls and it’s a gift I never asked for but am so grateful I got. She was meant for me.

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"She's taught me to be present. To listen and watch for what lights her up and then pour every last ounce of energy into growing that." Yes. THAT. What an amazing and beautiful lesson to have learned. That is a gift I wish for all children to receive and for all parents to give. It's something I know I could improve upon. And of course I'm so glad you mentioned that you wish for people not to pity you or your daughter. For me I think this is one of the biggest barriers people with disabilities face. Pity comes from a place of judgement and assumption and only sees disability from a negative point of view. As you said, it's a gift you never asked for but are so grateful you got. Amen sister. Thanks again Molly for sharing your beautiful family and especially your beautiful Zuzu with us. I have so much love for your little family.

Wasn't that a beautiful spotlight? Thanks you guys for reading week after week and sending people my way. As always, if you or someone you know would like to participate please email me at thislittlemiggy at gmail dot com.

Have a great weekend!

XO
Miggy

3 comments:

  1. I love Molly's answer to your last question--what a great reminder for all parents! And this post made me want to get my kids outside more.

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