Special Needs Spotlight || Ryder

Hello All! I am Meghan. Mama of Ryder (almost 5!) & Gunner (2), and wife of Matt. My husband and I met in high school and got married in 2009 (not really high school sweet hearts, but definitely a typical Midwestern love story ). My husband was serving in the Marine Corps at the time of our marriage, so I moved to Virginia in 2009. After 2 years there, my husband received orders to Southern California. Around that same time, we found out we were expecting Miss Ryder May (insert all the heart emojis!!!!) We moved to California in 2011, and Ryder was born in 2012. After his third deployment, my husband decided to separate from the military. We left sunny San Diego for Scottsdale, Arizona. About three months into our life there, Ryder had a seizure that embarked us on an emergency move back to Cincinnati. For the past 5 years we have spent countless hours searching for an answer to Ryder’s delays. In November of 2016, we got our answer. Ryder was diagnosed with Asparagine Synthetase Deficiency Disorder. She is one of around 19 reported cases in the world, and the first ever at Cincinnati Children’s Hospital. In my spare time I enjoy sleeping, eating chocolate, wandering aimlessly in Target and catching up on Grey’s Anatomy!

Miggy: Hi Meghan and welcome. Thank you so much for sharing your journey and your sweet family with us today. So can you take me back to the day you knew something wasn’t quite right with your daughter, Ryder? Was it during pregnancy, shortly after birth or sometime after that? If it was a little later what were some of the red flags and how long did it take to get a diagnosis? Do you remember how you first felt? Can you compare those first thoughts and feelings with how you feel now?

Meghan: I cannot really pinpoint when I knew something was wrong with Ryder. This is going to sound bad, but maybe closer to 3.5 or 4 years old?? The first few years of her life are a blur. My husband deployed when Ryder was 7 months old, and returned until she was 15 months old. From birth, we were in and out of the hospital with reflux issues that remained undiagnosed until she was about 6 months old. She was 10 pounds, failure to thrive at 6 months old before her doctors finally put her on reflux meds. I thought until she was about 9/10 months that she “had a rough start” due to the reflux and failure to thrive and that she would catch up with her peers. Around this time we did an MRI, due to developmental delay and small head circumference, where we found out she had white matter volume loss in her brain. The MD told me “It’s just not as white as it should be. We expect her to continue to gain skills just at her own pace.” I left thinking she would just be behind. I was a 27 year old, clueless as anything, first time mama.

Her seizures began a few months later, and they ran a genetic test called microarray to rule out a genetic disorder. That test was negative. In a nutshell they told us to enroll in therapy and continue life as planned. We treated Ryder like a “normal” kid, and still do. We did all the therapies, skills came but were slow. I remember saying, “She will walk by two”. Well she crawled by 2, but is now almost 5 and still doesn’t walk. In July of 2014, Ryder had a well check with a new pediatrician in AZ. As soon as she walked in she asked, “Have you ever heard of Angelman’s Syndrome?” I said, “No!”, and dismissed her ideas as craziness. In August of 2014 an absence seizure. The doctors in Arizona sent us to a rare disease specialist. The first thing he said to us was ““Have you ever heard of Angelman’s Syndrome?”. He wanted to run genetics testing for the disease. We decided to move back to Ohio to be seen at CCHMC. They ran two Angelman’s test, both were negative. When the seizures continued and all test were negative, I asked to switch Neurologist. At this point I really realized that something was off. She was not getting worse, but not getting better and this would be lifelong. We could no longer continue thinking that this was going to get better or be “fixed.”

We met a neurologist, Dr. Franz who has changed Ryder’s life, and has kept me sane. At our initial appointment with him I told him I needed him to be honest with me and tell me what life with Ryder would look like. Everyone else gave a cookie cutter answer in the past. He said that Ryder would be dependent on us her whole life, but he expects her to walk, communicate, have friends, learn, have a job with assistance. He said the take away is not what she can’t do, but what she can. He said her life has meaning, and purpose. There is a reason why she is here. Focus on the good. I will never forgot that moment. Whether it was the moment I came to terms with the fact that there was something wrong, or the moment it all came full circle, I don’t know. I do know I am forever grateful for that moment in her journey.

I am a completely different person now than I was at the beginning of all of this. I am a chatty Kathy, but I internalize a lot of things when it comes to Ryder. It is painful. I remember being so scared and almost embarrassed to tell people about her struggles. Aside from our family and close friends, I did not publicly announce Ryder’s journey until 2015. I have never been ashamed of her. She is a damn rockstar. I always felt like it was my fault, or that I caused her issues somehow. Now, I just tell people who she is, and how far she has come. We are hopeful for her future, and she has a team behind her that is rallying for all her success.

Miggy: As you told me in your email, Ryder’s condition is super rare–as in she is 1 of 19 people in the world with this condition. Can you educate us on your daughter’s condition and explain how her needs affect your day-to-day life?

Meghan: Ryder was diagnosed in November, by whole exome sequencing, with Asparagine Synthetase Deficiency Disorder. I literally cannot even pronounce the words of my own child’s diagnosis. There is little research on the disorder (4 published articles), but this is what I do know! ASNS is a super rare neurometabolic disorder. This means, it gets worse. This is an autosomal recessive disorder, meaning there is a 25% chance for reoccurrence with each child. Matt and I both carry a copy of the gene, but are not affected. Our son has a 2/3 chance he is a carrier. Most children who were studied, did not live past infancy due to severe medical complexity, but there are three reported cases of children who have lived into their third decade of life. Children with ASNS present with microcephaly, severe developmental delay, brain abnormalities, seizure disorder, and progressive volume loss of the brain, all of varying degrees. Ryder’s symptoms are similar, but less severe, leading her doctors to believe this is a spectrum disorder. She was diagnosed with microcephaly; and at the age of 5, her head is only 18 inches around. My little peanut. The white matter volume loss, and microcephaly are the cause of most of Ryder’s delays. She is unable to stand without assistance, walk without assistance, use the potty, or speak. She says very few words with meaning, and mostly communicates to us through nonverbal cues. She started therapy at 15 months. She went 4 days a week for a year, and when we moved back to Ohio, she enrolled in the Perlman Center, where she was in therapy 2 days a week for 2.5 hours. The disorder, and surrounding issues have caused a lot of sensory issues with Ryder. She mouths EVERYTHING! It is debilitating at times, as you cannot get her to do much when her hands are always in her mouth.

Our day-to-day is likely close to the same as our “typical” friends, except with a lot more heavy lifting! Ryder needs help with almost everything she does. Her dad and I carry her from location to location, help her in and out of bath, bed, her chair etc. We are lucky that Ryder is able to sit on her own and crawl! She has been very determined to get where she wants to go. Stealing chocolates from her Grannies snack table is one of her favorite past times! Scheduling is also a struggle. With the endless therapy appointments, medical appointments and days at school, it literally takes a village to get Ryder where she needs to be every day, and on time!

I struggle at times with the isolation of being a special needs parent. I think that is one thing that is hard for parents of typically developing children. Since our day to day is very structured around Ryder’s school, therapies and appointments, it is hard to find time for play-dates, hanging out, vacations, date nights etc. I have a complex about leaving Ryder for too long; in fear that something will happen and I won’t be there. I think it is a lot to put on a temporary caregiver (the medications, the things to look for if you think she is having a seizure, teaching them nonverbal cues to help figure out what she needs… “this grunt means this, this squeal means that”) It can become more of a chore to leave her with someone, than anything. So I often times decline invitations to do social activities. It is hard to attend a party at the trampoline place, when your child can’t stand. I recently have been connected with 3 other families who have children like Ryder. I am so thankful for them. It is nice to talk with other mom’s who have children like Ryder; and who just “get it”. They have been a wonderful, unexpected blessing in all of this!

Miggy: What are the biggest worries you face for Ryder? On the contrary, what are your hopes and dreams for her?

Meghan: Like any mother, I worry about EVERYTHING!! J My biggest fears are she won’t ever “fit” in or be accepted for who she is. I secretly never wanted to find a diagnosis, because I didn’t want it to define her. She is such a fighter. Thinking of people dismissing her because of her handicaps keeps me up at night. Adults and children alike can be cruel. I worry she will never find a pack of friends & be involved in typical youngster trouble making.

Larger worries surround her long term health and quality of life. I still check on her throughout the night, because I fear she will have a seizure I don’t hear that she doesn’t come out of. Our doctor has warned me about silent seizures; and they scare me to death. I think a lot about the future. Who will take care of her when I am gone? Will she live in a home? Will she be all alone? Am I going to outlive my child? It breaks my heart. I try to stay in the now, but future worries are real, and just as important as the day to day worries all parents have.

My hopes and dreams for her are endless. I hope to see her make friends, play on a sports team, have a favorite color, write her name, go to prom. I dream that one day I will hear her say “I love you” or use her arms to give us hugs. I hope her life is seen as meaningful, and that she is happy and knows how loved she is. I hope that people embrace her differences, and that she is able to teach people compassion and empathy. I hope to see her conquer her biggest obstacles in life, have a crush and get a first kiss from a cute boy. I hope she lives a long life surround by people who love her, even after I am gone.

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?

Meghan: Laughing is the spice of life!! I love this question. Although no particular moment stands out, we do have lots of laughs! Ryders laugh is contagious. Her screeches bring a smile to everyone’s face. She is pure joy. I do think it is comical that my 5 year old just cruises around with a geriatric walker. Tennis balls and all. I mean, seriously?

Miggy: How can people best approach or respond to Ryder or your family in general? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Meghan: We are a pretty normal family and very approachable. As Ryder gets older, I like to assume people in the community realize that something is “off.” Most people will try to talk to her and realize when she screeches, or doesn’t respond, that she is nonverbal. Almost everyone has picked up on that, old and young. They are always very nice, and often do not ask “what is wrong with her?” they just sweetly talk to her until she smiles and go about their business. I usually interject and just let them know that she doesn’t talk, but we think she knows what they are saying!

Not to say we haven’t encountered some true assholes. People can be rude. They speak without thinking, and often times just make themselves look really bad. We had an encounter at Costco where a woman made a comment about her being too big for a binkie. She made the comment to her husband, in a rude manner, and didn’t think we heard her. My husband not so nicely replied back to her. We explained that she had brain damage and the binkie was calming for her. The woman was clearly caught off guard and embarrassed. I didn’t feel bad for saying something to her. I hope that she walked away from that situation realizing, 1. You shouldn’t be bad mouthing a 3 year old & 2. Diseases are very often unnoticeable/silent. Just because you look “normal” does not mean there is not something going on you can’t see. I hope that taught her to think twice before making a comment in the future.

I wish people knew that sometimes, saying nothing at all the best thing you can do! I have had people say “It’s God plan!” I know this sounds bad, but that is not comforting to me, and it does not make me feel better. I have cursed God’s name a few too many times during this process, and I am mad. It breaks my heart to see my child suffer and have no way to understand the root of suffering or how to make it stop for her. I have yet to come to terms with the “reasoning” behind it all. Why do children suffer this way? Why my child? The stages of grief as a special needs parent are REAL! I go back and forth through them, and just when I think I am to the acceptance phase, something happens and the cycle starts over again. The nagging feeling of never knowing “why”. You can never fully understand the grief until you live it. I wish people didn’t feel the need to make a comment because they think they should. What is hurtful to me, might not be to my husband, or another family in our situation. We don’t want anyone to feel sorry for us, just respectful of what we are going through.

Miggy: Are there some ideas you had about having a child with special needs that have since changed now that you actually are a special needs mom? If so what are they?

Meghan: I guess before Ryder, I never really thought about what life would be like with a special needs child. When I was a teenager I used to babysit my neighbor who had Down Syndrome. I also volunteered in Child Life as an adult at Georgetown University Hospital. There was a very special little boy there who was medically complex. I was drawn to him like a magnet, and remember telling my husband I wanted to foster him! Maybe it was a foreshadow for my future. When I first found out about Ryder’s brain damage I kept thinking, “at least I am a patient person.” That speaks volumes now. Ryder was my first, I didn’t know any different, I just knew this is the hand I was dealt and I was going to make the best of it. It is hard, way harder than I ever could have imagined. I give props to all the moms and dads who have children more severe than Ryder. It is hard on every aspect of your life, but ironically, I wouldn’t change it. Ryder has made me a better person. Would I take away her struggles if I could? 100%, yes! Can I imagine her any way other than who she is? Absolutely not!

Miggy: What is the biggest lesson you’ve learned since becoming Ryder’s mom?

Meghan: I have learned SO much since becoming Ryder’s mom. The biggest lesson I have learned is to unapologeticly advocate and be a champion for your child. I push the envelope if I do not feel like she is getting what she needs. Those who know me well know I have never had a problem holding my tongue. It is different with Ryder. If I feel like her needs are not being met, you better believe someone is going to hear about it. We have been fortunate to only hit a few bumps in the road with providers. With the hustle and bustle of health care, kids like Ryder are left in the dust. Especially if you are undiagnosed. They are a lost cause & it is a damn shame. Ryder’s issues are my issues 24/7 for the rest of my life. A provider can care for 1 hour, once every six months. If they don’t, I will be sure to remind them.

I have also learned life can change in the blink of an eye, so make the most of what you have. On our way into Ryder’s whole exome results appointment I told Matt I was nervous. He asked, “Why? How much worse could it get?” I said, “She could have some brain disease that will get worse and she could die.” Matt said something along the lines of, you are a crazy pessimist, lol. We walked into the room and those were the results we received. I encourage people from all walks of life to live every day to the best you can. Leave chores for another day and go outside and soak up the sun with the people you love. You cannot get these moments back. No matter how many years Ryder lives, whether it’s 5 more or 75 more, I want to know her live was full of happiness. Making memories that will stay with her brother, Dad and I for a lifetime. To close with one of my very least favorite lines, “Special kids go to special families,” I am so very very thankful that that “special kid” is mine.

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Meghan, this was fantastic, I don’t even know where to begin… First, your honesty. I so appreciate it when we tell each other our truths and I’m glad you shared your truth with us. Not all special needs situations are created equally–they vary greatly in both the rewards and hardships. No matter  where we fall on the spectrum, it’s important to acknowledge that there is indeed, variance. Of course, like all families, you love your daughter fiercely regardless of the challenging circumstances. I also loved the story you shared about meeting your neurologist who changed all of your lives. There are some truly amazing doctors out there and we are so lucky when our paths cross with theirs. I know Lamp was about two when we met the doctor who would change everything for us. It is so worth the effort to find the right doctor. Really, there is so much good info here I could go on and on! Thank you again for sharing your story and your family with us today. Please give that sweet Ryder a hug from me. 

As always if you or someone you know would like to participate in the special needs spotlight please email me at thislittlemiggy at gmail dot com. 

Have a fantastic weekend!

XO, 

Miggy

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