Raising a special needs child is difficult. Raising more than one is difficult. Raising a special needs child while trying to stay “fair” to his neurotypical siblings…almost impossible.
That’s right, we have a slightly more sensitive word to describe the siblings of children on the spectrum. Neurotypical is preferential to calling them our normal kids. Naturally, that implies that our ASD child is abnormal and that’s not a path we want to venture down. So we say neurotypical with a slight awkwardness, but it’s the best phrasing that we have right now.
Whatever special need your child may have consumes significantly more time, financial and emotional commitment than their siblings require. For those of us with children on the spectrum, it’s often an invisible cost as you don’t see the appointments the same way you would see a wheelchair or other equipment. Knowing the financial toll this takes on us gives me an extra-large dose of sympathy for the parents that also have to invest in equipment and/or medication for their children.
So what is the cost?
Appointments. Getting there (especially if you are not right in the city) demands fuel and wear and tear on your vehicle. It costs us time away from work and/or childcare costs for siblings. We have been fortunate enough to have friends step in to help us with the childcare, which we are so very thankful for. Depending on your other children, you may or may not be able to bring them along as all your attention needs to be on the appointment itself.
Therapy. So far we have been blessed enough to have not had to pay for our son’s therapy. However, he is quickly aging out of the free stuff and any further therapy will be out of pocket. It’s expensive and waitlisted, but we will do what we have to do to keep him moving forward. So the renovations take a back seat. The old vehicle gets limped along rather than replaced. When your child is Autistic, his progress is more important than the other stuff.
Home therapy. We homeschool, so we spend time teaching all of our children, but our son gets extra time because he needs extra time. We include his sisters when we can. Especially when it comes to social and life skills. Some of it, though, just has to be one on one.
Emotional investment. Naturally, we are emotionally invested in all our children. But our son needs more. If we are out and about we have to plan around him (we can’t go anywhere overstimulating or with people in costumes, etc.) and that’s not always fair to the girls.
We’ve talked a lot about how great it would be to take our kids to DisneyWorld; but for the foreseeable future it is not an option. Our son is TERRIFIED of mascots/people in big costumes. Spending time with friends on farms or acreages requires a tight leash on the kids because of his propensity to wander.
Then there is the exhaustion that comes with sleepless nights, emotional days, and the overall alertness that we must have to all of his surroundings. So who gets the short end of the parental stick?
We do our best to balance everyone, but many days our best feels lacking.
Our oldest has many responsibilities that most 7 year olds don’t. If we’re at the park, she has to help keep an eye out for him. If she gets a talking toy as a birthday gift, she can generally only play with it when he’s not around (sensory issues). Lately, he even wants her to fall asleep with him most nights – although that one is her choice.
So, how’s a mom to balance it all? An awful lot of prayer, for starters. For God to help the girls to understand their brother’s needs and be sensitive to them. To not feel jealous or resentful. And for wisdom for us as parents.
From time to time, I have special trips with our oldest. We’ve done girls weekends away with family. We’ve done spa days (haircuts) or lunch dates. Last year we even saved up to fly to my hometown to attend a friend’s wedding.
These gestures certainly help, but are also easily forgotten when she’s feeling neglected. She sometimes needs to be reminded of the freedoms that she gets and her brother doesn’t. I’d love to sit here and tell you that we have it all figured out and are doing a great job of balancing all 3 children, but that’s simply not the case.
As any parent, special needs or not, we are doing the best we know how to at any given moment. That’s about all that we can do.