A child with special needs (or as some parents and children would rather call it: a disability) can be a very demanding job for parents. Throw into the mix a sibling or two and now you are managing several different worlds of need. Oh, and a spouse or partner – now it’s a party but without the disco ball!
Now let me change the perspective: what it’s like to be the sibling of a child with special needs. In my house, my daughter can be exceptionally demanding and difficult on most days. These are the days when I find myself drained and unable to respond to my other two children with patience or just plain old consideration.
When I sit with my thoughts at the end of the day – the daily day-in-review beat down you are all familiar with – I feel guilty. I feel like I’ve cheated my two boys. I feel like I didn’t connect with them about their day’s struggles or celebrations. I feel like I became consumed by the intense emotion that gets riled up in me and that I work so hard to manage.
Every few months, my older son will confide in me that he needed something from me but didn’t tell me because his sister needed me more. He doesn’t ask for help or vent especially on the days that my daughter is especially difficult because he can see I’m exhausted. I understand why he does what he does but I’m also sad that he feels like he has to wait.
It’s not his job but I realize that there is a unique dynamic that happens in the home of a family with a child with special needs. When I think about my own children’s’ experiences as well as the experiences of the children with whom I work professionally, there are a few things to note about their day to day.
They Feel Like the 3rd Wheel
We all do this. We know our child’s needs and we anticipate, accommodate and plan ahead. We wake in the morning with a plan in mind for the day’s activities or schedule and we know what to avoid or how to make it easier or more pleasant for our child with special needs.
We don’t think in this same way about our neurotypical children. We think that they will adapt and be ‘okay’ because, for the most part, they can, and do, just go with it. Well, at least much better than our child with special needs. And when they resist, we push back… harder… because we know we can get them to agree.
But, the truth of the matter is, they feel like the third wheel. They know they are here for the ride but that the focus is on their sibling. They know that their parents will jump on the need of their special needs sibling, quickly. They know that their needs may have to wait. They see their parents’ distress, they see the tantrums, they see the doctor’s visits. They see it. They see it all. And they feel the need to ‘be good’ so as not to create more demand on their parents.
They Become Another Adult in the House
Although it may not be said that the sibling of a child with special needs has to help out, they know and we need their help. We need them to do their homework, to know when to take out the trash, to leave parents alone, to get ready for the next day, and stay on top of their school work.
We need them to delay gratification. We need them to know when to intervene with their sibling and when to leave the room. Sadly, they become another adult in the house, even when we, as their parents, don’t expect it or even want it. They just take on additional responsibilities and become little adults.
To Help, Validate and Celebrate Often
Although it is very easy for the moments to become days and the days to become months and the months to become years, as parents of our neurotypical children, we need to stop trying to get through the day. Instead, I encourage us to set a reminder to take a moment to ask about our child’s day – ask about that Math test, the drama within their friend group, and remember what is important to them. To remember to celebrate a good grade on a test or project, or getting a part in the school play. And to comfort them when things just didn’t work in their favor. To acknowledge that they too are an important member of the family.
We may know this logically, but we may not be conveying it clearly and often enough.
Let’s make it a point to validate and thank our neurotypical children for what they do for our families, emotionally and physically. To recognize that our child with special needs is indeed demanding, difficult and needy and that there is a special place in the family and family dynamic for everyone.
Make statements like, “I know that it’s hard to live in this house sometimes, but thank you.”
“Thank you for doing your homework without being asked.”
“Thank you for helping me out when I didn’t even ask you.”
“ Thank you for being patient. Thank you for being tolerant.”
“Thank you for being sympathetic.”
Find the Time to Be One-On-One
I know it’s easier said than done, but in the same way we make time for our child with special needs, we need to set aside time for one-on-one time, out of the house, with our neurotypical child. Set aside time once every two weeks and put it on the calendar. Go out for a walk, a mani/pedi, dinner, lunch, a movie, or a stroll in the mall. Whatever is interesting for your child and gives the two of you uninterrupted time to bond. It’s easy to get lost in the day to day care of your child with special needs, but setting aside the time (and treating it like a doctor’s appointment for your special needs child) will get that time on the calendar. Treat it as a sacred appointment and try not to postpone or reschedule.
My fellow parents of special needs children, I see you, I hear your struggles. I know this is a big balancing act in managing everyone’s needs. I’m not asking you to do more, but I am asking you to disperse your energy a little differently.