Author: jojothestrong

Jojo is 8 years old. If I’ve learned anything in the last 8 years, it is that having a kiddo with special needs is isolating. It can feel lonely. It can be lonely. In our traditional circles of friends and family, there are no other kids with special needs. I feel very blessed to have family and friends that support us, and accept Jojo just as she is.

But I need more. I need to know I’m not the only one. I need to understand how to navigate the education system, what kinds of supports are available. I need deep, meaningful relationships with families like mine. I need to feel in my bones that I’m not alone in this.

We’ve found new circles, beautiful circles. Jojo’s classmates and their families, a local support group for parents, the horse ranch where Jojo rides, and even a global support group specific to Au-Kline Syndrome on Facebook. These circles are the antidote to loneliness and isolation. For me they are essential.

Au-Kline Syndrome is relatively new and super rare. Genetic testing is becoming more widely available. As a result, there continue to be new diagnoses all the time. I’ve gotten some comments on recent posts about this. If that is you, and you want to join the Facebook support group, you can do so by scanning this code

You can also email me at sara@jojothestrong.com

The truth is I sat down to write many times. The words didn’t come. There were too many other words crowding my mind.The pandemic. Politics. Distance learning. Jojo’s services paused. The election. The insurrection. Family illness. Return to school. Covid surges. Being apart from family in far away places for the longest stretches in my whole life.

I don’t know what it is now. I went for a run the other day, and words poured out. I went to an IEP meeting, virtually of course, for Jojo several days before. It was wedged between work meetings during a long, busy day. It was a deeply frustrating and disappointing meeting. If I had given myself time to think about it, I would have realized I was devastated. But I didn’t. I fired up zoom for the next meeting and switched back to work. After work I probably poured a glass of wine and had dinner with my family and helped with homework and did baths and bedtime and crash landed into bed to watch Morning Show so I could get lost in someone else’s devastation.

And then, on that run, the IEP meeting bubbled up to the surface. And the words poured out. Maybe because when I’m running, it is just me. I feel the most like myself. I don’t lie to myself. I feel safe. I can think about things head on. I could face the ugliness of that meeting and take a good look at it. And here is what I wanted to say.

My daughter is

A student.

In the first grade.

In a special ed classroom.

My daughter has

Developmental delays.

Disabilities.

Special needs.

My daughter is

Beautiful.

Funny.

Spicy (like her mom).

My daughter is

A blessing.

A sister.

Struggling in a world that was not designed for her.

My daughter is

Deserving of education and care and love.

Not at fault for her differences.

Full of lessons if we just slow down and pay attention.

My daughter needs

A wheelchair.

A van with a ramp to port the wheelchair.

That parking space that is always taken by a car that does not have a handicap placard.

And no to the lady who just needs the space “for a minute”. The school office doesn’t give those out.

My daughter is

The best thing that has happened to me.

The hardest thing that has happened to me.

My daughter is just like your child, grandchild, niece, neighbor, friend.

My daughter is human.

#au-klinesyndrome

Jojo has been the harbinger of many things in my life. Grief, pain, sadness, uncertainty. And love, so much love sometimes I don’t know what to do with it. Many aspects of life with Jojo are really really difficult. She’s teaching me that life can be hard and we can do hard things¹. A hard life is not a bad life. It is a beautiful life. Jojo is a blessing.

Jojo is blessed too. She has a loving family and many angels that have shown her the kindness and generosity of the human spirit. She hasn’t seen the ugliness that the human spirit can learn and propagate. She doesn’t understand that people are treated unfairly. That people are hurt or killed because of how they look. She doesn’t know that some people fear others just for being different. In Jojo’s world, different is not a threat. Different is the norm. Different is beautiful. Each of her classmates is unique. They look, move, talk differently from one another. A different life is not a bad life. It is a beautiful life.

I envy Jojo in this way. Her unadulterated perfect human spirit will likely never be tainted. Her heart does not know hate and likely cannot learn it. She has taught me so many things and will teach me so many more. I hope I can pass the lessons on and be deserving of the many gifts she has given me.

¹From Untamed by Glennon Doyle. I can’t recommend this book enough.

Our worldview is shaped by what we know. Work, school, spending time with family and friends. Those things are universal. We also have our niche worlds, shaped by our interests. Music, rock climbing, skiing, movies, whatever our thing is. The more we know about something, the more we can relate to it. I love to ski and have spent more days on mountains than I can count. I know that scene well. There is a vocabulary, a style, an etiquette, a way of doing things. When I hear that a friend had a powder day, I can feel their joy.

I watched a movie recently called The Dawn Wall. Check it out, it is on Amazon. It’s about climbing. Specifically, climbing the hardest part of El Capitan in Yosemite. The sheer face that had never been climbed. It was incredible to watch. In every scene we were either cringing or shouting expletives. I’m not a climber, that is not my scene, I don’t understand it. And for those that live in that world, they do. They get it. They would see that movie from a totally different perspective.

As humans we are mortal. Each of us will cease to exist one day. It is a certainty. Somehow though, dying seems like something that happens to Other People. And when someone we love passes; it feels so unfair. Rare. Because that doesn’t happen to us, it happens to Other People.
What does any of this have to do with Jojo? Well before I was blessed with her, having special needs and being disabled were things that happened to Other People. I didn’t really know a lot and didn’t think about it much. And then suddenly, it was happening. Not to Other People. To me, my husband, my son, our parents.

As I mentioned last time, Jojo is moving onto Kindergarten next year. What I didn’t say about that post is that it was my speech for our district school board meeting. For months I was advocating with several other moms to get the elementary school in our district, where Jojo’s brother F goes, to offer space for a second special ed classroom that the county would run. I sat in these meetings where the special ed kids were spoken about very much as Other. Those are Other kids, that’s a problem for Other People to solve. The conversations went immediately to budget. What will it cost to educate these Other Kids? As if we’re talking about a cost-benefit analysis and not a human. I was outraged. I was deeply saddened. I was so troubled I couldn’t sleep. This went on for a while and then I came to see. It’s not that the school board and administration don’t care about our special ed kids. It just isn’t their scene. They don’t get it. And they need to get it.

Then I turned that critical eye on myself. What isn’t my scene? What am I missing? So many things. Just one example – there is a huge homeless population where I live. That is happening to Other People. I want to remove the word “Other” from that sentence. That is happening to people. People in our community. Ergo us. Maybe we can expand our worldviews a bit by lifting ourselves out of our niche worlds occasionally. Maybe we can get involved in new scenes that will open our eyes to people and situations that are different than us. Different, but not Other. And we can begin to come together.

#Au-Kline Syndrome #Rare Disease #Special Needs

Jojo is five years old now. She has a big five-year-old body. I see a big heart and a stubborn streak and lots of giggles and silliness. Tell me what you see.

Most five-year-olds are moving through the word with balance and agility. They are doing sports and learning to ride bikes. They can reason and control emotion more than in their toddler years. Tantrums are the exception rather than the rule. I see my Jojo moving through the world with assistance. With limited language. Tantrums are still the rule. I see a little girl working very hard and often  having a hard time. Tell me what you see.

At the park, I see Jojo sitting and playing, scooting around. Asking “help” or “up” to get in and out of swings, sand boxes, and slides. She isn’t walking. She has orthotics on her feet. This is my Jojo, what I’ve always known. Tell me what you see.

At the grocery store, I see Jojo in the cart. Saying an emphatic “HI!” to everyone she sees. Some smile and return the greeting. Some don’t. Jojo points at things she recognizes and labels them. Some words are clear while others are not. “Apple!” “Cree!” (her word for ice cream). Jojo wants to get down “down! down! down!” and scoot around on the floor. I say I’m sorry, the grocery store isn’t a safe place to do that. She tantrums. This is my Jojo, happy and social, and then angry and frustrated like a flip of a switch. Tell me what you see.

At a restaurant, I see Jojo growing impatient waiting for a table. Jojo usually loves eating out. We’re waiting our turn, I say. Jojo points at an empty table “see, see, see”. I know, I say, we’re waiting for the lady to clean it and take us there. A loud scream. Heads turn. We go outside to wait for the table to be ready. We are seated and she calms down. We have coloring supplies, dolls to “feed”, all the things Jojo loves. We order and the food comes. Tea Leaf Salad. Jojo usually loves salad. Not today. She starts fussing. Noodles are coming next, she loves noodles. I try to explain this. She tantrums, a big one. My eyes dart around, assessing the level of scrutiny and annoyance coming our way in the crowded restaurant. I stand and lift her and step outside with her. Thankfully our table is very near the door. The server comes out and I ask for the check and the food to go. Another woman comes out, a diner. She has a package of Chinese sweets. She waves them at Jojo, which makes her cry harder. “What is wrong with her” she asks. She’s trying to help. How much time do you have lady I want to say. Instead I say I think she’s tired. We take our packaged salad and noodles and go. This is my Jojo, unpredictable sometimes, unable to calm down after she’s past the point of no return. Tell me what you see.

At the horse ranch where Jojo rides once a week, I see Jojo smiling wide, arms flapping, saying “Skippy Skippy Skippy”. Her pony. I see her crew of three people with her, one leading and one on either sid. For half an hour they ride. I see four humans and one horse doing what they love. I see joy and unspoken understanding. I know what they see.

At school, I can’t see Jojo. I am not there with her every day. I have grown to trust her teachers and therapists. I know they will understand her, not expect typical five-year-old behavior from her. I know they will work hard to teach her and help her grow. This is a preschool that is exclusively special education. When we meet throughout the year, they tell me what they see.

Next year Jojo will graduate from preschool and move onto Kindergarten. I don’t know where yet. There are a variety of special ed classrooms in our county. In neighboring districts. There is only one classroom in our district. Special education needs vary from child to child and not every classroom meets the needs of every child. Rather the opposite is truer. It is important to find the right fit.

I’ve been anxious about this transition. I’m afraid we won’t make the right choice for her. That her needs won’t be met, or she won’t have the same opportunity to learn and grow as her general ed peers. I’m afraid she won’t be seen. I can’t see the future yet. Where we’re no longer in the safe cocoon of special ed preschool. A future that requires navigating 18 school districts of varying quality and proximity to our home. It feels hard. Daunting. So many things about raising a special needs child are.

I see a girl who has blossomed in the last 2 years in preschool, with unlimited potential. I see a girl who deserves a quality education just like every child does. At an excellent school, close to home, with her brother. Tell me what you see.

Jojo’s brother started the first grade this fall. He’s playing soccer and hanging out with friends and saying things like “that hill was so epic!” when riding bikes together. He’s changing before our eyes. Turning into a big kid. And he is able to to understand a lot more about what is going on with his sister. He sees his friend’s younger siblings that can run and play and not mess up his legos. When our friends and their kiddos come over to our house, or us to theirs, the difference between Jojo and other kids her age is stark.

This big kid of ours has grown into such a loving big brother and protector. At home, he scoots on the floor, side by side with his sister. He helps her down the stairs by sitting behind her, wrapping his legs around her waist and his arms around her torso and bumping down, one step at a time. He can anticipate her needs, figure out sometimes before we do why she is upset. He has such a big heart.

And. He has a lot of sadness and frustration. Expectations are different for him than they are for Jojo. Much of the time she gets more attention. She has lots of helpers that visit her – her therapists. They have toys and play with her. To a kid this is fun, not work. Rules are unfair from his point of view. He is expected to clean up after himself. He dresses himself, brushes his own teeth, takes his dishes to the sink after dinner. Many of these things Jojo cannot do independently. He started asking me to dress him and carry him to bed. I indulged this for a while until that phase ran its course and his sense of independence returned.

Lately we’re in a new phase. Jojo has always had an overactive startle reflex. The vacuum, the coffee grinder, the hair dryer cause her to panic and cry. Her older brother, running into the room or talking to us from the other room incites screams. More recently, it is supercharged and she’s added hitting to the mix. Sometimes she is just being a 4-year-old and testing what she can get away with. Sometimes though, it is real fear. She flails and thrashes and hits. It is hard to tell the difference and the difference doesn’t matter. We’ve begun bending our lives around this behavior, changing the way we live and what we do to avoid triggers. This is hard on hubs and me, imagine the burden it is for a 7-year-old kid. Left unchecked, Jojo’s Au-Kline syndrome can easily become the center of our universe.

Hubs and I work hard to make space for Jojo’s brother at the center of this universe. We talk with him about Jojo’s “gene problem”, his words. We acknowledge the difficulty of hard moments and wallow in the joy of of silly, happy moments. We take turns having special dates with just him. We let him be sad and cry when he needs to. Some days we do this with patience and care. And some days, we’re right there with him feeling completely over this particular center of the universe.

#au-kline syndrome #rare disease #special needs

Will Jojo walk? This is a question we’ve been asking ourselves and each other for four years. And if she will, when? There has never been a good answer. Every doctor, therapist, and teacher has said “I don’t know”.

At Jojo’s last school IEP meeting, a goal was set for her to stand unsupported for 1 to 5 seconds by the end of the school year. I was so discouraged. If she is only standing for 5 seconds one year out, walking if possible must be years away. And that “if possible” is always there, lurking. Casting a shadow of uncertainty on the whole idea. Maybe she will walk. But maybe she won’t. And as time marches on, that uncertainty grows.

And Jojo continues to grow. Each day she is heavier. It is not possible to carry her much farther than driveway to front door or parking lot to entrance of wherever we are. We use her wheels all the time now. A few weeks ago we had an occupational therapist visit our home to discuss accessibility for Jojo. She made some recommendations. A contractor came. We began the process of getting a wheelchair accessible van. We began preparing ourselves emotionally and financially.

Then on Christmas night, in an instant everything changed. Jojo started walking with her walker and she didn’t stop for 45 minutes. This was the first time she took more than a couple steps with no hands on her for support. And the next day, she wanted to walk again and did laps around our house for about the same amount of time. The day after that we went to the park in our neighborhood and she walked with her walker around the basketball court like a pro.

A few days later Jojo had her weekly appointment with her Physical Therapist Janet that she sees outside of school. Janet was the first PT to start treating Jojo at 5 months old. She is amazing and we drive into the city on Monday afternoons, battling rush hour afterwards on the way home. I wanted to surprise her. When we arrived, Jojo walked right in with her walker. It was a truly profound moment.

Because I love a dramatic entrance, rather than put her on the bus I drove Jojo to school the first day back after the holiday break and she walked in with her walker. Her teacher, school PT, and the classroom paras all cheered. Jojo had her entire fan club rooting for her.

There are a lot of uncertainties about Jojo and her future. Where will she go to Kindergarten next year? Will her speech ever improve to age appropriate level? What is the level of intellectual disability? The list goes on, and now that list a bit shorter. Will she walk? Yes she will, yes she is!

In March this year Jojo turned four, and she became eligible to be a rider at a nearby horse ranch. Not just any horse ranch, it is a non-profit that provides therapeutic horseback riding exclusively for disabled people. Finally. Jojo has a thing. Something that is just for her.

On the drive to her first ride I was in awe. The ranch is in Nicaso, a small village about a 45 minute drive north west from our home. Nicaso is a tiny rural village with a population of 96. It is a beautiful part of Northern California with rolling hills and redwood trees. Much of the area is used for agriculture. The hillsides are dotted with cows in every direction. There are organic farms, even some small vineyards.

That first day was tough. Jojo wasn’t having it. For any young child, the unknown is scary. Something new and out of routine is confusing and disorienting. And not being able to have a conversation with Jojo ahead of time to explain and set her expectations meant absolute terror for her. Getting the helmet on was the first battle and I didn’t come out unscathed but got it done. Next was getting her on the horse. I really didn’t think it was going to happen on the first day. But these people are serious professionals. We stood on a raised platform, and I held Jojo as they brought over Skippy the pony. They whisked her out of my arms and onto Skippy and began walking toward the riding arena, which is at least a football field length from where the parents and caregivers are allowed to watch. She screamed bloody murder for about 10 minutes. I hid behind a tree, peeking around to watch. She finally quieted. I could see from afar she was happy. Her arms were flapping and wiggling, much like what she does when I arrive home from work at night. I was elated.

She rode for half an hour, with three adults – a guide on either side of her and a horse guide leading. When her time was up they started back to the platform and I came out of hiding. As soon as she saw me she started crying again. More evidence to support the study that kids are 800% worse when their mothers are in the room (satirical study here).

Now, six months later, when Wednesday afternoon rolls around and it is time to go to Nicasio, there are no tears. There are no screams, no need to hide behind trees. Jojo is so excited, she says “Skippy” over and over in the car on the way there. She loves riding. She comes alive. It gives her independence for that brief time while she’s riding. She’s able to move without being carried. She feels the movement of Skippy and that gives her muscles input, much like if she were walking on her own. That creates new neural pathways in her brain, rewiring it so she can walk one day. She builds her core strength and balance. And, maybe most important and least scientific is that horses are just cool. They can sense and understand human emotion. Riders bond with their horses and develop trust, confidence, patience, focus.

Side note – I highly recommend the movie The Mustang if you haven’t seen it.

Therapeutic horseback riding is becoming more and more trusted to have tangible therapeutic benefits to people with disabilities. It has brought such Joy into Jojo’s life and thus my life. Hooray for horses!

Many angels have come into our life since the birth of our little girl: Jojo’s teacher, her bus driver, her physical therapists, speech therapists, occupational therapists, all the moms in the support group I attend. And of late, I’ve found a more intimate community. A community of families living specifically with Au-Kline Syndrome. Literally all the known cases in world have found each other. And it grows by the month. For me, it all started with a comment, here on JojoTheStrong from a family in France. Their little girl had just been diagnosed with Au-Kline syndrome. They searched Google and Jojo’s shining face appeared in the results. We’ve started writing to each other. I am elated to make this connection and to feel like I can be helpful and give support to these parents who were just beginning their emotional voyage.

And then, this family from France shared that they found an AKS support group on Facebook. The oldest diagnosed is 19, and the youngest 7 weeks. The cases vary widely, in terms of disability and health complications. Despite these differences, there are so many things in common: resilience, kindness, generosity, hope, support, acceptance, love. One beautiful little girl is two years older than Jojo. Her mom posted a video of her walking for the first time, at 6 years of age. I watched this video over and over for the better part of an hour. Whenever I’m feeling down or worried, I watch the video. It gives me so much hope.

Life is beautiful and it is hard. We all have a thing, at least one. A thing that weighs heavy, makes us question our strength, our worth, our ability to cope. And our thing can be very lonely and isolating. Maybe we hide our thing, or avoid talking about it for fear of being misunderstood or being perceived as weak or negative or strange. Before this thing with Jojo, I had other things. I tended to hide them away. And what I learned from that – it doesn’t work. The thing feels worse, it seems to grow bigger and takes over. It feels insurmountable. Life feels darker and so, so lonely. Now, my thing with Jojo, instead of hiding it away I am putting it out front and center. And connecting with as many people as I can. With these communities I’ve found, one locally in special ed and the other globally and virtually with AKS families, I don’t feel lonely at all. I feel comforted, supported. There is light and there is hope. How can there not be when we’re surrounded by angels?