Miggy: Hi Megan and welcome! So happy to have you here today. First, can you take me back to the day you knew your daughter would have special needs? Was it before birth, shortly after birth, or sometime after that? Do you remember how you first felt? Can you compare those first thoughts and feelings with how you feel now?
Megan: We didn’t know during my pregnancy that there were any problems. When Aurelia was born, however, she immediately had a tough time breathing and quickly developed multiple other mysterious symptoms. She was in and out of the hospital for weeks after birth, and endured test after test, but no one knew what was going on. As she got older she continued to struggle with rapid breathing, chronic constipation, choking while breastfeeding (she couldn’t take a bottle at all), missed developmental milestones, vision problems. Doctors, specialists, even 2 geneticists, told us she’d grow out of it, but I knew something was different about our sweet girl. At 9 months, a new pediatrician took one look at Aurelia and ordered an evaluation with Early Intervention and referred us to a neurologist who in turn referred us to a (3rd) geneticist, who ordered multiple tests. At 14 months, we got our answer: Smith-Magenis syndrome (SMS).
Getting the news was surreal. We were lucky in that the geneticist had actually heard of the disorder and could refer us to an expert–that is a rare experience for parents–but even so she had little information to give us other than a printout from a website. It wasn’t until we got to the car and started googling that we really started learning about our daughter’s diagnosis. At that point we were filled with shock, fear and grief. It took weeks of processing and learning how to place boundaries on what we allowed ourselves to read about SMS before we could start to come to terms with it the fact our daughter had this life-altering disorder. We were scared, but knew we’d fight for our girl every chance we got. I focused on stories of small children with the disorder and told myself we’d take it step-by-step; the future could be dealt with later. That said, the reality of what Aurelia’s diagnosis meant took a while to set in. The first time another SMS mama said the word “disability” when describing our daughter’s needs, it hit me like a ton of bricks. I’d never thought of her diagnosis that way, or maybe never let myself think of it that way. It made total sense, but understanding that I had a child with a disability somehow took her diagnosis to another level for me.
Aurelia is 4, almost 5, now. In the past few years, we have made connections with an online worldwide community of families with children with SMS and even met a couple of families in our area. We’ve had amazing parents of older kiddos with SMS take us under their wing, become wonderful friends and valuable resources, something I hope to do for others someday. We’ve attended a PRISMS (www.prisms.org) conference to meet other families and persons with SMS and learn about the latest scientific findings. We are armed with more knowledge and support, which makes a huge difference. SMS is hard and scary at times, but I wear the label “special needs mama” with pride. We still have a lot to learn, but are making strides alongside our daughter, who surprises us every day with what she learns and accomplishes. She is teaching us to always presume competence and see the girl instead of the disorder.
Miggy: Could you please educate us about Smith-Magenis syndrome, how it affects Aurelia and how her needs affect your day-to-day life?
Aurelia is, in many ways, a “typical” kid. She’s smart, silly, and affectionate and she loves to learn and participate in family and school activities. She loves being outside, and is happiest playing in the waves and sand at the beach; she loves to paint and play with bubbles. She is, however, significantly impacted by SMS and is followed by roughly 20 medical specialists and PT, OT, ST and ABA therapists. Because she is very easily overwhelmed and triggered into intense behaviors, we have put plans and supports in place to help her and us get through each day. We schedule events and appointments at times she tends to be calmest. Keith and I tag-team on particularly strenuous appointments or at sibling events, making sure one person can attend to her needs while the other person speaks with the doctor or watches a performance. Because she doesn’t sleep much, either her dad or myself have to be up with her at night, meaning we are also continually sleep-deprived. When awake, Aurelia needs constant monitoring to keep her safe and calm, to keep her from running off unattended or doing something dangerous. Having someone continually by her side is also necessary to make sure a frustrating moment doesn’t become a full-blown meltdown and if it does, to move her somewhere safe so she doesn’t hurt herself. Persons with SMS often don’t have the ability to calm themselves or self-soothe; instead, behaviors and emotions escalate until someone steps in to help. Ignoring a tantrum is not an option. I don’t work outside the home, so I can be available to take her to her many appointments and be on-call when she is at school in case of a bad day. At school, she has a 1:1 aide that is always with her.
As tough as managing her disability is, seeing her little face light up when she’s having fun, or watching her hug her sisters or begin to run or jump, or hearing her say (or watching her sign) a new phrase for the first time, or feeling her arms around my neck is so powerful that all that tough stuff is very worth it. Yes, I would rid her of SMS if I could, because parts of it are so, so hard on her and us. But I would never go back and choose a life without her to rid us of SMS. Aurelia is not SMS. Aurelia lights up our world.
Miggy: What are the biggest worries you face for Aurelia? On the flip side, what are your hopes and dreams for her?
Megan: Making sure our daughter has the education, healthcare and services she needs to be cared for and also to develop and grow and learn to her maximum potential is the biggest worry right now. Our state is ranked 39th in the country for state services for persons with disabilities (according to the UCP State Scorecards). Not that impressive. Aurelia will very likely need lifelong supports and what is available here is not adequate for her needs. The Medicaid-funded programs she qualifies for (which are only for her, not our family; she qualifies because of her disability) are underfunded;one has a waitlist so long she may never be chosen for a spot, even though she’s being put on the waitlist at 4 years old. Public education in our city is rated amongst the lowest in the country and special education is even worse. Private schools aren’t an option for her unless we provide for all of her services ourselves, on top of tuition, and many aren’t set up for a student with her level of need, even if we could afford that (we can’t). Aurelia has an amazing teacher now in the public school system and the staff is good and trying, but the resources and policies of the district are such that as she enters elementary school and continues on, the prospects for her education are scary and possibly very limiting for her future. Ultimately, we don’t feel like we will be able to stay here long-term but we are also struggling to figure out where to move to, how to afford a move and provide for our other kids in a way that’s as fair as possible. Moving and starting the process of qualifying for services and finding her 20 specialists elsewhere is also daunting.
We are considering these life-altering moves and changes for our family because we want Aurelia to have the ability to learn and make friends and be included. We want her to be happy and safe. We want our family to have the supports we need to make sure we can provide all she needs. I hope she continues to love school and have positive experiences there. I hope she maintains the level of health she has now and continues getting stronger and making developmental strides and learns to pull back on those big behaviors. I hope one day she is able to go to college or get a job she loves and to live independently from us – whether that is supported living or a group home or whatever she needs. I hope she makes friends and always feels loved.
Miggy: How can people best approach or respond to Aurelia? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Megan: Our daughter’s behaviors can be intense. They are genetically driven and she does not often have the ability to control them. Sometimes we know she’s on edge and avoid people or curtly tell them to leave her alone; we may not hug a friend or shake the hand of a new acquaintance. This isn’t to be rude, but to be proactive and keep her from being triggered into a meltdown, as we know she is upset when people touch Mama or Daddy and has high anxiety around many strangers. Please don’t be offended. Other times, despite all our preparation and attempts to prevent it, we’ve pushed her past her limit and she’s in full meltdown in the middle of the grocery store or a park or a restaurant. People see a child screaming and hitting herself or the people she is with or throwing things and often react with gasps or comments on her behavior or stares. They don’t know that child only slept 4 hours of the last 24 and is in pain or is scared and can’t express it in a socially-acceptable way. If you witness a child melting down, please consider that you don’t know that child’s story, what challenges she faces. Know that the caregiver is doing all they can to calm that child, even if it looks like they aren’t doing anything. If you want help, please don’t touch the child or the caregiver or their things without asking, as that can exacerbate things. Instead, try engaging siblings in lighthearted conversation, without removing them from the caregiver’s sight, or simply ask, “How can I help you?” to the caregiver. Please don’t be offended if we don’t respond or say “No, thanks.” We may not know how to explain what we need in that moment, as we are laser-focused on our little one, or we may know that engaging with you could break a fragile peace we see on the horizon. Also, please recognize that she and we have every right to attempt outings to any public place, even if it could result in a meltdown, and we likely are working very hard to prevent them, even if we aren’t successful.
Megan: Aurelia’s older sisters are her friends, her teachers, and her protectors. They love her and help her and squabble with her, getting mad when she gets into their stuff. They make her laugh and teach her to make fart noises with slime and she wants nothing more than to be included in their activities and antics, unless they are annoying her. Aurelia’s disability definitely shapes their experiences together, and the older girls will learn compassion and patience in a way not many others will experience, but they also sacrifice their parents’ attention and get jealous. They are true sisters.
Miggy: Tell us something you love about Aurelia. A special story, a personality trait or just something others might not know.
Megan: That Aurelia shares my love for the beach is so wonderful to me. All my girls love it, but it is a place Aurelia is most at peace. The night before we go she carries around her bucket and shovel and talks about it nonstop. Once there, she is happy, running across the sand and reaching for the waves as they rush away from shore, laughing when they come back in and surround her. We stay for hours and she wants nothing more than to sleep within earshot of the water and return the next day.
Megan: The biggest and most important lesson has been learning how amazing kids like Aurelia are. I used to believe I’d never be able to handle having child with a disability. I didn’t realize what a light she’d be in our lives. I never knew how smart a child with a cognitive disability could be, how physically strong a child with mobility challenges or low muscle tone has to be to do the things most of us take for granted, how hard a kid with health problems works to make progress, how determined they have to be to keep getting up and dusting themselves off when they fall, how delightful it is to share in their moments of success and achievement. My daughter and the other children and families we’ve met since her diagnosis prove every day that children with disabilities live lives full of strength and brilliance and love. Yes, the challenges are there, but so is joy. It is such a gift to have our daughter and others like her in our lives.
Megan: You can do it. She is amazing. It will not be easy, there will be tears, but we can do hard things and she is so, so worth it. Also, find the other special needs mamas. They know all.
Beautiful words, beautiful family❤️.
May I just say that every Friday night I look forward to the time when I will have some peace and quiet and I will be able to read the spotlight!!!
Each one is fascinating and inspiring!
Today's mama, as you, Miggy, and all the others that have participated in the series are simply AMAZING as are their beautiful kiddos!
Thank you so much!
Thank you so very much for your thought provoking words regarding your family. This particular spotlight spoke especially to me with what all your family faces. You seemed to have highlighted the positive which I realize is sometimes very difficult to do. Thanks again for your words you shared.
Excellent reminder not to be judgemental or rude if you see a child having a meltdown. I know I've gotten on my horse and thought to myself, "I wouldn't allow my child to behave like that", but we don't know the full story. I know the meltdowns *I* would have, as a mature adult, if I was living on only four hours of sleep! Best wishes to Aurelia and her family.