Special Needs Spotlight || Jack and Charlie

I am the lone woman in a family of guys. My husband and I have four sons, aged 14 to 4. Our two middle boys both have special needs. Jack (12), has a rare condition called Macrocephaly Cutis Marmorata Telangiectasia Congenita Syndrome (M-CMTC). The hallmark of this syndrome, at least for Jack, is profound cognitive delay. He is big for his age, nonverbal, and can be aggressive. He also has autism. Charlie (8), is also on the autism spectrum, but is high-functioning, social, and verbal. He also has anxiety. We live in Utah and together our hobbies include a) spending time in the mountains, and b) surviving. Our family life is complicated, but has also been transformative. We are kinder than we were before. We are more patient with people’s foibles and accepting of their differences. The hard things have made us better people.

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Miggy: Hi Megan. Thank you so much for being here today and sharing your story and your family with us. You have 4 boys, 2 of whom have special needs. Let’s start with your oldest son, can you take me back to the day your first son was diagnosed? How old was he and what were some of the ‘red flags’ leading up to the diagnosis? Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?

Megan: My oldest son is typically developing. He was a precocious, extra-verbal child, so I thought I had basically nailed motherhood  Clearly, it seemed, I knew exactly what I was doing. And then I had Jack, whose life was fraught with complexity and which taught me that I didn’t actually know as much about parenting as I thought I did. Jack was born with a capillary malformation, giving his skin the appearance of a splotchy red birthmark. As an infant, we noticed that he had low muscle tone, extra flexible joints, and a few other physical differences. When Jack was seven months old, a geneticist diagnosed him with a rare syndrome, giving us a diagnosis and a lot of uncertainty about what Jack’s future would hold.

Learning that your baby has a condition that will severely limit his whole life is devastating. I’ve written before about how on that day more than eleven years ago, our old life crumbled and disappeared. Everything since then has been a rebuilding of a new life. Fear was my most pervasive emotion at the time, and frankly, for many years after. But I am less fearful now, with the perspective of having survived a violent reordering of my life and the constant barrage of behavioral issues that are simply part of our reality. We have made it through so many hard things; I’m definitely jaded, yet I recognize that we’ve lived through trauma before and we can undoubtedly do it again. Not that I want to do it again. I’ll add that disclaimer, in case the universe is listening and wondering what to send my way.

Miggy: Years later you would have a second son who would have different special needs–when did he get diagnosed and do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?

Megan: We knew from a young age that Charlie had anxiety, but we didn’t know he had autism until he was five. He is so different from Jack. We thought we knew what autism looked like, but we were much less aware then that autism really is a spectrum on which people of widely varying abilities can be placed. Charlie struggles mainly with rigidity of thinking and routines. Sometimes people have asked if it was easier to receive Charlie’s diagnosis than it was to receive Jack’s. My answer is this: Nope. It was not easier. It actually felt more difficult than learning of Jack’s differences, because now I knew what life with disabilities entailed. And now there were two.

Charlie has made tremendous progress the last few years because of medication, therapy, and terrific teachers in a practically perfect school setting. It has been heartening for me to see how the right environment and interventions can make such a positive difference. I used to be afraid for Charlie’s future, because his behavior is often like typically-developing kids. People expect children who don’t look disabled to behave “normally.” I worry about this less as I’ve grown to accept that Charlie is perfectly delightful just as he is. Of course I’m his mother so I can get away with saying something so flagrantly clichéd and biased, but with Charlie, it is honestly true. He is kind and compassionate, curious and happy. He is polite and helpful. He accepts people exactly as they are. Autism makes Charlie sweeter.

Miggy: Will you please explain what each of your son’s diagnosis are, and how their needs affect your and your family’s day-to-day life?

Megan: Explaining what life looks like at my house would likely take several days, some elaborate interpretive dance, and a fair amount of  European chocolate. But I will try. Everything we do at my house is circumscribed by the needs of the boys on the spectrum, and especially by Jack’s cognitive disabilities. We have routines in the morning, after school, before bedtime, and we follow those routines because if we don’t, it throws off the dynamic of the household and creates stress for Jack and Charlie. My boys have sensory issues and are limited in what foods they will eat. Jack has an aversion to using the toilet for bowel movements, which means that we live in pootown. Our crew explores the world by manhandling it, and our house takes a constant beating.

When we need to do something out of the ordinary, we have to be aware of how something new and unfamiliar may affect the boys. Because of the nature of his disability and his sometimes unpredictable aggression, Jack doesn’t do well in many busy public settings. We are always preemptively thinking about if a situation will work for Jack. When he does come with us to public places, we have to have a second adult to ride in the car, for safety reasons in case of a meltdown. Jack has a male behavior therapist who rides with me to all doctor’s appointments and other community outings. Many events and places are not a good fit for Jack, and we are fortunate to have respite sitters who care for Jack at home. We are compelled to get sitters for the most basic activities, like going to church, the orthodontist, or the grocery store.

Miggy: What are the biggest worries you face for your children? And conversely what are some of your hopes and dreams for them?

Megan: I feel confident that we will always be able to meet Jack and Charlie’s needs. We have always managed in the past, somehow, and I honestly feel that the future will work out because God cares about my boys. My fears surrounding my boys often take the shape of worrying that I will burn out and lack the emotional energy I need to take care of them. So I have gotten pretty good at taking care of myself. It’s the overused airline comparison of putting the oxygen mask on yourself before you put it on your child. It’s counterintuitive, but critical to keeping everyone breathing. My husband and I religiously go on a weekly date. We take evening walks together when Jack’s sitter is helping out. We watch The Unbreakable Kimmy Schmidt together after the kids are asleep. I also pray every morning and ask this question: “Tell me what you want me to do today to help my family.” We are all still here and still making progress, so I think it’s working.

My hope for my boys is that they will always find support and love from the people around them. I’m less concerned about accomplishments. They are already successes, living and growing and being in a body and mind that works differently. This feels miraculous to me.

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?

Megan: We once clapped and cheered in the car when Jack told his brother to “shut up.” We were ecstatic that he spoke and it made sense as his brother was bothering him. It’s not an everyday milestone for celebration, but it made us incredibly happy. I also get insanely excited about Jack using the toilet for his number twos, and have to suppress the urge to post about it. “Calling all ships! Jack did a BM, and he did it correctly!” It just doesn’t translate for everyone, you know?

Miggy: You’ve written a lot about your son Jack in particular and the challenges you face raising a son who is non-verbal and who has violent outbursts, even recently breaking your nose. Certainly this is a challenge for you and your family from a parenting perspective, but I imagine that it also presents as a challenge as you family and your son in particular probably face unwanted judgement. What do you want people to know about Jack? And  how can people best approach or respond to your children and family? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Megan: While most of us feel pretty comfortable with the idea of a sweet, gentle person with special needs, many people are uncomfortable with a violent disabled person. What does one say? How should one respond? There are no easy answers or solutions, so I appreciate it when people don’t try to offer them. Instead of “Have you thought of putting Jack in a home?” a better alternative is, “I’m so sorry things are so difficult right now. Here is some chocolate.”

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 children and their relationship with your other two sons?

Megan: My oldest and youngest boys play an important role in our family. Their gifts and challenges are different from their brothers’, yet they complement each other. Their strengths fit together like pieces of a puzzle  making the whole thing work. Seeing my boys help and support their brothers is my happy place.

Miggy: Lastly, what is the biggest lesson you’ve learned since becoming a special needs mom?

Megan: I’ve learned that life is so much more than the carefully curated perfection of Instagram and Pinterest. It’s more than what your kitchen looks like or where you buy your clothes. It’s more than where you vacation or how you spend your leisure time. Life is a sharp, grueling journey that has the potential to reveal a better, stronger, kinder you. Life can give us dimension, if we let it.

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