Special Needs Parents: The Lived Experiences of Caregivers to Special Needs Children
Like on most Saturday afternoons, Sophie and Jack are conducting the goings-on of their home like an orchestra. Sophie is breading chicken in preparation for chicken parmesan as the timer on the toaster oven goes off. She opens the door with her clean hand and the smell of blue cheese on figs escapes.
Jack is traversing a kitchen floor that is covered in all the trappings of homemade Halloween decorations; construction paper, tape, markers, and scissors, while holding a bowl filled with enough dog food to feed their Great Dane. Each of their three children plays independently while the adults perform the necessary duties to set us up for an uninterrupted conversation.
Sophie and Jack’s oldest child is neurodiverse. In the following interview, they discuss with me what the experience for them, as caregivers, has been. As with everything else they do, this conversation was borne out of their deep capacity for generosity; generosity with their time, their truth, and their story.
Part one will explore receiving a diagnosis for their son and the emotions that followed before looking towards the future, the value of a proper support team, and their message to other parents in part two.
1) Receiving a Diagnosis
So, tell me about your family…
S: “We are a family of five. Since this is an interview about our experience as special needs parents, I’ll start with a bit about our oldest: he is 12 and has 22q11 deletion syndrome, which means he is missing a piece of his 22nd chromosome. Much like Autism Spectrum Disorder, 22Q has many potential symptoms and a wide variance among people diagnosed. Some are profoundly disabled. Others have milder cases and might not realize they have the deletion until later in life or not at all. In our particular case, our son is also diagnosed with intellectual disability, autism, and ADHD. He is being followed by many doctors for other various physical symptoms as well, although we’ve been lucky that he has been on the relatively healthy end of the spectrum for kids with this disability. His most challenging areas are around activities of daily living, anxiety, social skills, safety, and attention. He is in a subseparate classroom and is receiving lots of therapies through the school system, and when he was younger he needed many interventions as well. Our middle child is a girl, she is 10 and typically developing. Our youngest is a boy, he is 7 and also typically developing. I’m a stay at home mom”.
J: “I work in IT”.
10G: “And I go to school!”, Sophie and Jack’s daughter exclaims with a smile on her face. She is sitting with us in the kitchen. They know that just as it is for them and their son, her life is also affected by special needs in a way that they did not plan for her. Because of this, they give her the respect of a literal seat at the table when adults are discussing matters that involve her, within reason.
What prompted you to inquire about a diagnosis for your oldest?
S: “In the delivery room he had an issue with one of his eyes, there was an ophthalmologist in the room immediately and I think you knew *turns to Jack* right then and there that something was going to be amiss”.
J: “I strongly suspected, as did my dad…the first thing he said was ‘we’re gonna love him unconditionally’ and I was like ‘jeez, dad...okay go for the darkest thought’, but I guess that's what we do”.
S: “I was hoping for the best for a while, I think that was my way of processing in bits. I couldn't jump to the possibility of a lifelong disability immediately. It felt too overwhelming to consider that while working to make the already difficult transition into new parenthood, complete with sleep deprivation, trying (unsuccessfully) to nurse, and figuring out how to be a mom. I wanted to be able to hope for the best outcome–which to me at the time was that he was a bit behind but that he would catch up. I did notice in the baby classes we did that he was having trouble with some of the stuff the other babies were doing easily; at each stage he wasn't hitting his milestones. I was worried enough that I thought he needed help to catch up with his peers. When I wanted to get him into early intervention when he was less than a year old, I remember the pediatrician said, ‘You can wait until he’s 2’, and I was like ‘I don't want to wait’”.
So you had an intuition that was tugging at you?
S: “Yes, I knew that something was wrong, I was hoping it…
J: …he was clearly not making his milestones, he was clearly not keeping up with other kids…
S: …but we didn't know exactly what it was, so I think I was hoping that it would be something that…
J: …he cried a lot”.
S: “Yeah he was a tough baby”.
J: “He was crying or sleeping pretty much as a newborn”.
Sophie and Jack’s sentences weave together like they’re braiding hair. They finish them for each other while keeping eye contact, almost like they can read each other’s minds.
S: “When we had him in early intervention and they did the assessment on him, I remember seeing it come back that he was in the abnormal range for speech, OT, cognition, PT… everything across the board. I remember getting that back and seeing how low those scores were and being like ‘Oh…okay’. We knew our child, but seeing the scores compared with the average in black and white is a different experience.
I spoke with the lady from early intervention, and she suggested getting a genetic test done. I asked her, ‘Could it be something…’, I don't know if I said, ‘fixable’, but maybe, ‘Could it be something minor, or is this something almost certainly life alteringly-big? Could he grow out of these low scores or are we looking at a lifetime of having difficulty in all these areas?’. The low cognition in particular felt frightening to me. She kind of looked at me and shook her head and said something like, ‘it’s very, very unlikely (that he will grow out of this)’.
What did that feel like?
S: “Awful”.
J: “I mean, I had already assumed that's where we were going, but hearing it was a total gut punch”.
S: “Yeah, it felt like all hope was…*nods*. But we did the genetic test, and Jack was away on a business trip in California when I got the call from the doctor.”
So you weren’t together when you got the call?
J: “No, I was in LA”.
Sophie starts to cry at this moment. I suggest we pause or stop altogether but she shakes her head “no” and insists we go on. Suddenly, her oldest appears at her side asking if she is going to make him salmon for dinner. She has to let him down; chicken is for dinner tonight. He saunters off at this news which makes us all laugh. This moment of levity cuts into the most emotional part of the interview so far, and we’re all amused by it.
S: “Yeah, so I got the call from the doctor and immediately started googling 22q, and there’s such a wide range. I still was hoping for the best in one part of my mind, thinking ‘oh, maybe it could be the most minor end of the spectrum’. But at this point, my hope was tempered with a lot of facts and information. Probabilities for various outcomes. Regardless, it was definitely looking like there were going to be a lot of challenges in our future. Jack was in LA and he just, did you take a run or something?”.
J: “I don't really remember, I think I went into a fugue state while wandering the streets of Hollywood”.
How long were you apart for after receiving that news?
S: “Only a day, but it felt so long. I just gave our son a big hug and looked at him and said to him, ‘You’re still you. You're still exactly the same kid you were before we just know more now’. That's a perspective that you have now, all these years later. I was trying to have that outlook at the time, but you have to go through the grief before you can really get there. I was doing a lot of googling during breaks from taking care of him”.
What was the journey like of coming to terms with that as a couple and as individuals?
S: “I think we handled it a little bit differently as individuals, but we did try to come together and support each other as a couple and talk about it. I think we would kind of take turns; if one of us was struggling, the other one was being strong and being supportive. Then we might switch. But we did handle it differently mentally. I was always trying to look for the silver lining so I had enough positivity to get through the whole day at home parenting our son, while he really needed to go deeper into his grief all at once before he could climb his way out of it. I would grieve in pieces, and if it became too much, I would try to put it away to come back to when I had more time to process. And, I think, to give myself a mental break so that I didn’t fall completely apart.”
J: “I was deeply depressed for a year or two”.
You're using the word grief…what were you grieving?
S: “The life we had hoped for for our son, and for us, and for our family”.
J: “I think grief is the perfect word for it. Nobody, when they have a child, thinks that will happen to them. We don't have a family history of anything like this, we just didn't see it coming. I don't think any young couple, when they have their first child, thinks that’s going to happen to them. You think about it happening to you, instead of thinking about the child, at least at first. You’re grieving the way you thought your life was going to go”.
2) Personal Identity
J: “It has fundamentally changed our identities and made us better people…”.
S: “Being a stay at home mom changes your identity, and with our son, that wasn’t really much of a choice. Childcare is more challenging with a kid that needs the amount of supervision he does. With doctor’s appointments, therapy appointments, and days out of school for frequent illnesses, the number of days that I would have had to be out would have made any employer baulk…we basically decided to put all of our eggs in one basket with Jack’s career so that one of us could be fully available. It has been a tough shift for my identity…I have my masters degree. Those skills haven’t gone away, but they had to be shifted into ways to use them to benefit my family and the life that we’ve built”.
Do you ever find yourself wondering about what your career may have become?
S: “We talk about that and the trajectory it may have taken. But I’m proud of the person I’ve grown into on this path, too”.
J: “I doubled down on my career more than I would have. I'm not naturally a type A person. I really have thrown myself into the ‘dad’ role more consciously. I was raised in a household where the parents were relatively hands off. I feel very protective of our oldest and all my kids so… I get very demonstrative in my love, which is different from how I was raised. I think it’s a good thing”.
As someone who is also not type A, I imagine it would be exhausting to adopt type A personality traits when that is not your natural personality.
J: “Yes, completely exhausting. Like with anything, human beings are very adaptable, to damn near anything. So, it's almost like I have a split personality: work personality and home personality. For me, that's a good way to attack it, you have to be able to ‘turn off’ when you get home. For someone like our son, the pace has to be slower, then when you go back to work you have to go pretty hard”.
3) Being a Parent
What is your favorite thing about being parents?
S: “The individual relationships I get to build with each of my kids, but also the family dynamic that we get to build together. There’s a lot of love in our home.”
J: “I really like that my kids and my wife are like my best friends. I really like getting to teach the kids new stuff and experience things through their eyes”.
S: “Watching them become the people they’re growing into is a really cool thing to watch”. What is your favorite thing about your youngest son?
J: “He is very demonstrative with his love. He is, you know, a deeply sensitive but also empathetic person. He is also hilarious and very joyful. I'm not going to say he's not an anxious person but compared to the rest of us, he's more carefree, and I think that is going to serve him well”.
Next, I ask their favorite thing about their daughter. For the first time, Sophie and Jack don’t look towards each other before answering, they simply look with adoration at their daughter across the table from them. She looks back, so child-like and completely mature all at once, but beaming with anticipation to hear their answers.
J: “I really, what I think about her, which isn't always fair to her, but I think of her as the oldest child. She's the one that I can treat as my partner sometimes, the one that I can rely on for help with the other two kids. She's very reliable, she's very responsible, she's deeply kind, and she has a sense for her brothers that is a little bit parental, that I sometimes fear is too much and I worry is a burden for her…yeah, it's heavy, but it's something that I respect and love about her”.
S: “I'm impressed with how thoughtful she is about herself and other people. I think that she is a very introspective person. She gives a lot of thought to things, and she cares about making good decisions. She is growing into a young woman that I am extremely proud of, in the way that she treats other people, in the way that she orients herself in the world. She is kind, hardworking, and
cares a lot. I love that about her”.
What is your favorite thing about your oldest son?
S: “I think it’s really the same as the other kids, I enjoy watching him learn and grow. Developing a strong relationship with him and watching the person he’s becoming. Even though it’s not the same trajectory as the other two kids, it’s really the same thing. He has a great sense of humor. He’s a hard worker. He is passionate about so many of his interests. And the way that he shows love is very pure”.
J: “There is no filter for better or for worse”.
10G: “His hugs are like this–demonstrates a tight hug”.
J: “His kisses are truly an experience”.
10G: “He kisses you for like three minutes straight”.
S: “The way he experiences joy is very….it kind of makes everyone around him also feel joy”. 10G: “When he smiles it feels really good”.
S: “The purity of his joy. I also love his sense of humor. He’s a very empathetic person. Well, not empathetic…”.
J: “That's complicated”.
S: “I think he truly cares about other people. He can be…the social skills are difficult and it’s sometimes difficult for him to know how to express his empathy at first without a bit of scaffolding. But he cares about others.”
J: “Yeah, and he can get lost because of his own anxieties, but he is a fundamentally empathetic person underneath his disability. But, yeah…the purity of his joy”.
It’s true, the world around him bends towards his joy. He invites you into experiencing it with him in a way that makes you feel like you belong. I know, because I worked with him, Sophie, Jack, and the other two children in a nanny role for many years. This role allowed for many things including sufficient care for all the children and their various needs at a crucial time in their early childhood, as well as the smooth operation of the home. They are now some of my closest friends. In part two we will dig deeper into the value of an adequate childcare team and what Sophie and Jack want parents of neurotypical children to know.
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