Parenting Children with Different Abilities

At the beginning of August, my two older brothers drove 15 hours (and crossed two provincial borders) to come and visit me for their vacation. This was a big deal as the global pandemic meant that we hadn’t seen one another in two years. We certainly made up for it as we spent four days laughing, catching up, hiking, sightseeing and reminiscing. We are close, and I still need their support at 48 years old.

That is why it breaks my heart that my two children will not have that same sibling relationship. Yes they have a special bond and they are close, but it’s different as my 15-year-old is the big brother to his 12-year-old sister who has a rare genetic disease and autism.

Jordan has spent the majority of his life in the shadows of his sister--the therapy sessions, the behaviour issues, the extra attention, etc. Summer required weekly physical therapy at 18 months to learn how to walk and then occupational therapy at two-and-a-half years to learn how to use a spoon and put on socks.

And we haven’t even mentioned the screaming. Summer was non-verbal until she was ten years old. Which meant that, as a toddler, she couldn’t walk or talk. The one thing that she could do was scream--and this wasn’t beneficial for any of us.

Jordan was an energetic little boy who was craving his parent’s attention. He couldn’t understand why his sister was getting so much of our attention and patience. Why was his sister allowed to throw things and yell to get attention, yet he wasn’t?

One moment that I’ll never forget is when he was around five or six years old and he asked, “Am I special too?” and I was confused for a minute…..AND then I realized what he had meant. He had heard me on the phone with my family and friends explaining that Summer was special needs. My heart cracked a little that day. That is when I realized how important communication is--regardless of a child’s age. Their little ears are always listening.

Here are my some of my lessons learned for communicating with my neurotypical son:

• Ask him whether he has any questions - reassuring him that he can ask anything.
• Explain the situation in a way that he’ll understand and is relatable and not in medical terms. For example, I told Jordan that his sister didn’t learn as quickly and easily as he did. That her brain and body take longer to do things than most people.
• Explain that emotions are natural and it's ok to get the ones like anger, frustration and sadness. Though reiterate that he cannot act on them - getting angry is alright, pushing his sister is not alright.

All of that being said, they do have a beautiful bond. Summer’s eyes light up when she sees her brother, and no one can make her laugh like he does. For Jordan, establishing communication where he feels seen and heard is so important.

As a caregiver, I see many posts about being patient with the people for whom we are caring and being patient with ourselves, but sometimes I have little patience for Jordan and I get frustrated because I know that he knows better. Then I try to gently remind myself that he’s a kid whose life has been turned upside down by having a sister with a rare genetic disease and autism. He acts out simply because he needs love--he’s also learning how to communicate.

**A version of this article also appears on Caregiving.com . Caregiving.com cares for you as you care for family and friends.