Special Needs Parenting: Experiences of Caregivers to Special Needs Children - Part Two
Last week we were introduced to Sophie and Jack, who selflessly invited us into their world as parents to a neurodiverse child. In part two, Sophie and Jack tell us their message to other parents and the value of a proper childcare team.
As we spoke, I recalled an interaction Sophie had had with a well-meaning acquaintance. In reference to Sophie and Jack’s oldest son, this person said, “Autism is his superpower”. This bothered Sophie because it discredited how hard her son has to work just to exist in a neurotypical societal structure. It discredits her and Jack and how hard they work every day as parents. I reminded them of this to hear more of their thoughts on the toxic positivity that sometimes floats around the zeitgeist.
J: “[In the case of our son, autism as a super power is] utter nonsense”.
S: “There’s a place for all of it, people are allowed to feel how they want to feel, but the messages that resonate the most with me are the ones that both acknowledge the hard and see the worth and the joy. A life lived differently is not a life less lived. At the same time, he has a real disability. It affects every aspect of his life, and it also affects our other children’s lives and our lives: we are taking his disability into account with every decision we make, and we have to consider his needs in every situation we encounter.
To gloss over that piece of it in service of the idea that he’s a whole person is just not necessary; of course he’s a whole person. This should be an obvious fact, just as it is for our other two kids.
He is important and he is not worth less than anyone else because of his disability. However, he does have a disability that requires accommodations and support, and many things are more difficult for him than they would be if he didn’t have a disability. If we forget that piece as a society, we leave kids and families to fend for themselves when what they really need is support.”.
S: “With the best of intentions, people try to jump in as if they know best. Watching how people choose to react when finding out he has autism or an intellectual disability is really interesting. You get a lot of, ‘Oh my god, I’m so sorry’. You’re like, ‘No, no condolences necessary,… he just has autism’”.
J: “Or you get, ‘My nephew has Asperger’s! He’s at MIT!’”.
S: “Another important thing to remember for people interacting with children with special needs and their parents is that we're trying to teach our son to interact in the world in a socially acceptable way. So if you encounter a child like ours out with their caregiver, it’s a good idea to follow the lead of the people who know the child best and are trying to help him. If they are
coaching their child on how to respond appropriately in a given social situation, don’t cut them off and say ‘No, it’s fine!’ Let them work on the skill so their child can learn to respond appropriately or safely in future social situations”.
J: “You get a lot of silly questions and suggestions, some of which are a bit intrusive–about financial planning, parenting choices, family dynamics. Of course we’ve already thought about what you’re proposing we think about”.
S: “Yeah, a lot of people think they have magical insights. I think it’s important to assume competence when talking to all parents, but particularly with children with special needs, those parents have probably done a lot of research and know their child really well”.
How does the reality of your present differ from what you thought it would look like?
S: “Before we got the diagnosis, I thought having a child with an intellectual disability was one of the worst things that could happen. Our lived reality of having a son with an intellectual disability is different in many ways than what we imagined our life would look like–and it’s challenging in many ways, too.
But it is also full of meaning and joy. It has brought so many wonderful people into our lives, and it has completely changed us and made us better people. Our son has taught us so much about what’s truly important in life. A life with a disability is not a life less lived. Personhood is personhood whether you have a disability or not. Of course I would have said that before, but watching our oldest grow into the guy that he's becoming has really made that truly, viscerally clear to me in a way that I didn’t understand before”.
J: “I have had very little experience with people with intellectual disabilities. I had always felt…uncomfortable is too strong, but I just didn't know what to do with them. Frankly, when I was growing up going through town, you didn't see them. They were hidden away. So, I thought this was going to be the end of the world, so to speak.
When it first happens to you, all you can do is compare what your child is doing compared with the other kids, how much harder they are compared with the other kids, what their future might look like compared with the other kids. All of that is extremely daunting. With time, you learn that what life actually looks like is not what you feared. Of course it has challenges, but our son can lead a worthwhile, joyful life. He is a real member of our family who communicates with us, who laughs, who cries. He comes with us on our trips. Like any kid, he can be an absolute joy and a total pain in the butt”.
S: “The things that bring me joy about being his parent are the same things that bring me joy with the other kids. He is a great kid: hard working, silly, and affectionate, and he has a great sense of humor and lots of things he’s passionate about. There are many challenges, of course.
But now we can look at him with hope and say we're all going to do the best we can to help him reach his fullest potential, the same way you would for your other kids as you guide them to lead
a meaningful life. In that way, I don't think the core value of our life looks dramatically different from what I pictured it being when we started a family, even though of course the logistics are more complicated than we imagined they would be. There's more pressure on Jack to make sure we’re set up for our oldest to be taken care of”.
J: “Planning. Financially you basically have to start thinking about, not just your own retirement, but his long term care; which is a significant challenge”.
How has Chris’ diagnosis affected your marriage?
S: “Our marriage was pretty strong prior to him…
J: …stronger now. What I would say though, for any couple going through a traumatic experience together, in the short term it is deeply uncomfortable. I don't think I was the easiest person to live with for a while there. But you either let it make things dramatically worse or you're going to get through to the other side and become stronger for it. It forced communication; it forced working through past problems. Any problems you are having, you can't really tolerate them when you're under that level of stress. So, in a weird way it makes you stronger”.
S: “We made the conscious decision to turn toward each other instead of away from each other. I feel like our marriage now is…
J: “…it’s okay”. Said with a cheeky disposition
S: She laughs.
What do you wish parents of neurotypical children understood about your experience as a parent?
J: “In the beginning, we were very isolated. We had early intervention services, but those were mostly individual therapy appointments, so there wasn’t much opportunity to meet other parents who understood what we were going through. Before we got into the public school system, we felt cut off from the rest of the community. All the playdates didn’t work for us, Sophie was dealing with getting to all the therapy appointments and doctor’s appointments to manage all of our son’s health issues, and we were always acutely aware of our child’s inability to keep up with other kids and with the typical developmental timeline.
Oftentimes, the extended family felt unsure of how to deal with our son, so some of our family members pulled back. And even with friends and family who didn’t pull away, it was hard for us to see them because our son needed such a great deal of attention that visits were difficult. It was very, very isolating. As the kids got into the public school system in our town, the special needs parents had a great support network that we’ve become part of, and that has been a big help. It makes us feel like part of a community rather than like we’re doing it alone”.
S: “Some people see me mostly as a mom to the younger two. They go to a different elementary school than our oldest did, and not everyone there knows him. Invitations come along, expectations of volunteering for things and attending community or school events where families with neurotypical children can participate effortlessly, and it's very challenging.
Depending on the event, it can be hard for me to safely manage all three kids. My son can tend to wander and doesn’t have a great understanding of safe behavior in public, and he also needs a lot of scaffolding to participate socially. If he comes to any family event, he needs a great deal of attention and support, so it’s difficult to focus on my other children or help out the other adults as a volunteer unless we have a second adult present. If we want to bring the younger two to a party that entails music and loud noises, that's a real challenge because it requires getting a babysitter for our oldest or bringing along a one-to-one aide to support him, or maybe Jack has to leave work early to come help me–which is a difficult proposition a lot of the time”.
Although their oldest can be a noisy guy himself (he loves to chat about his special interests), he is very noise sensitive regarding the world around him. For many years, he was terrified of anything loud. Walks would end with a dash back to the house and tears because of a lawn mower or leaf blower.
Teachers had to come up with alternate paths outside the school to avoid the machine that cleans the cafeteria. Parties are still an iffy proposition because of the crowds and noise and for many years were completely impossible.
Music anywhere in the house would prompt a demand to turn it off, even if he was in a different room. The Happy Birthday song is his biggest phobia of all; for years, if someone sang the birthday song, it would result in a full panic attack that would require days, sometimes weeks, of emotional support from his parents to get beyond it.
He will talk about it constantly as if it had been the most traumatic moment of his life. Beyond the additional difficulty in navigating public places, this also leads to a family dilemma that demonstrates the kind of sacrifices that siblings of kids with special needs often make to accommodate their siblings.
Sophie and Jack had to decide: do they force their oldest to endure an experience that he perceives as physically and emotionally unbearable, the same way we experience pain and terror? Or do they take the Happy Birthday song away from their neurotypical kids on their birthdays? It seems like an impossible question, but like most things so far, they’ve developed a system.
They don’t sing the birthday song at home, as it’s a safe space, and all three kids know that when it’s time to blow out candles, the oldest is going to retreat to somewhere that is safe and quiet for him and return to share cake and ice cream after the candles are out.
The siblings have become so sensitive to their brother’s feelings that they don’t really like hearing the birthday song in public now, either. Their daughter, particularly, feels nervous when she hears it and looks around to make sure her brother is out of ear shot even when she knows he’s far away or not present.
Their oldest refuses to attend non-family birthday parties and the family has to get a babysitter so both parents can attend these events.
Sophie and Jack’s house used to be filled with music at all hours. For a time, this had to be one of the sacrifices they made in service of their son.
S: “But we’ve been working on it, and he’s made so much progress. We’ve been adding music in the car and in other rooms, and he’s learning to be much more flexible about that, although we turn it off for him when we’re all in the same room and he requests it. We sometimes turn it on and have a dance party, which he enjoys, and he can tolerate it in the car now. It’s a learning process, and we’re always trying to build these skills to help him be a part of the world. He’s really doing great with it.
S: “But it’s true that everything requires more thought, more planning, more consideration around ‘can we do this or not?’. I would love nothing more than to be one of the parents that signs up to volunteer for things, but our oldest needs that one-on-one support in group settings to ensure safety and appropriate behavior.
I really want to be there for what my neurotypical kids need, but there are those additional needs from him that sometimes make it impossible and in every instance require lots of planning.
There’s nothing that we do ever in our lives as a whole family that doesn't involve a lot of pre-planning and accommodation toward making it work for our son.That’s what I really want other parents to understand. Even with all the pre-planning in the world, we may have to leave early or might have trouble being social while we are there if he’s requiring a lot of support”.
What would you say to other parents whose child has just received a diagnosis?
S: “When it first happened, there’s this poem, ‘Welcome to Holland’. This poem made me so mad when he was first diagnosed. It makes a lot of sense to me now that I’m in a better place”.
J: “Everyone sends you this damn poem”.
S: “It made me so mad, I hated it. But, my ultimate message would be something in the vein of that poem. It is going to be hard, you are going to have to grieve the life you had planned, you are going to need to readjust to pretty much everything in your life, but you still have this child
in front of you who you love and who loves you.
Your family is going to be okay and you are going to get back to a better place. But you know, maybe that's not even a fair thing to say to some families depending where they are in their journey. There is a lot about our family that has ended up working well, and we’ve gotten to a really great place, but I know there are families out there who have bigger challenges and less support.
I wouldn’t want to be the person sending Welcome to Holland to someone who is going through something a million times harder. But I know that the right message is to try to reach out and find support where you can, because there are lots of wonderful people out there who want to help, and to find the joy and the peace that exist in the small moments during your day. Celebrate your wins, whatever they look like in your world”.
J: “It sounds cheesy, but it does get better. I'm always very hesitant to talk to people about it. I'm in a group at work, for parents of Autistic children, and when new people join, you can see that they're really going through it. It feels like the end of the world because it's not what you expected. Of course it's going to be hard, but it will be okay”.
What was your experience of having a nanny with a special education background as part of your support team?
J: “It was a tremendous benefit”.
S: “Tremendous. Part of the reason why our story is such a positive one is that all three of us had learning mindsets and open communication in our approach. If you can approach raising your child as a team endeavor alongside someone who has expertise, you can bounce off each other and get to a much better place than you would on your own”.
What did this look like day-to-day?
S: “When our oldest was at his most challenging, having another adult in the household made it so much less isolating and made me feel so much more able to center myself and approach the challenge from an emotionally regulated place because I felt like I had support, not just our son.
When you’re doing it by yourself it’s so overwhelming. But coming up with plans together and implementing them together, whether that’s your spouse, a nanny, or any team of trusted help…
J: “...there’s a lot to be said for someone coming in fresh. The grind will get you. Sleep deprivation will get you. I remember coming in the door and Sophie felt such relief with that changing of the guards…I would take over the least emotionally regulated child because I was coming in fresh.
S: “And the solidarity of feeling like you have support, that you’re not doing it alone. It’s so important as a parent to operate from an emotionally regulated place, especially to a special needs child. They can be even more draining on your emotional bandwidth.
Particularly with certain diagnoses, their needs can be so high at times. Having another person to tap in during the hardest moments is so amazing. It gives you someone to create a plan with, to implement that plan with…
J: “...and that person can come in fresh with that un-exhausted brain. Finding a person who has been trained in the field who can help you navigate the tricky situations that come up, it’s absolutely invaluable”.
S: “Also, getting to watch how someone, who has the expertise, handles a situation with your child is so helpful if you can approach it with a learning mindset. When it works well, it can completely move the needle.You say to yourself, ‘Oh! I’m going to do that next time’. It gets you there in a way that just brainstorming on your own or reading about it on your own doesn’t. Seeing a new technique work in real time with someone else really helps you get to a better place, and it has really improved my parenting”.
Sometimes reflection is required to truly appreciate how far we all have come in life, either as individuals, family units, at work, or in our friendships and partnerships. The hum drum of our every day can dilute what deserves celebration.
After reading part one of this series, Sophie and Jack expressed grateful disbelief about how far their oldest and their family has come, as compared to those formidable, early days of an official diagnosis. To this, they credited their team of teachers, therapists, and a highly-qualified nanny…their partnership with each other and importantly, the resilience of their son. They hope that sharing their story instills hope in other parents and caregivers.
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