Month: January 2020

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!