The sibling of a child who has special needs

We adopted Afua 14 months ago and she is our first child with a visible disability. I often think how our life has changed in the last year, the good and the challenging. Medical equipment, considering wheelchair accessibility of various places, appointments and surgeries have all become a frequent part of our every day life. Our four older kids have gone through the changes along with us and I have worried if they would resent their little sister or our decision to adopt her.

Jake is my compassionate kid and it was no surprise that he became a caring big brother to Afua. Her smile is all he needs to be happy.They have developed a special bond.

Sometimes people assume he is the child most affected by our adoptions. After all, he was the baby of the family and now he finds himself as the second oldest out of 5. Sure, I can't be a room mom at school or come to every class party. I may be at therapy appointments or hospital more than he likes. There are sacrifices that all of us have made to make room for more children in our family. It happens in biological families too as a new baby arrives. But the changes in Jake over the last year have been so evident and I think he is growing into a wonderful young man.

Afua's bus comes first each morning and he comes outside to spend time with her. They play basketball together (she passes the ball and he scores but he always high fives her for a great assist). Last year, when they were in the same school building, he would stop and give her a hug and kiss several times a day. He doesn't have to do any of this, but this is how he wants to spend his time.

I grew up with a younger brother who was hospitalized for weeks at a time. I know how that breaks the familiar family routine, causes parents to be preoccupied and everyone to be worried. I also know the other side, the side that shaped me to choose a helping profession, to care about the people who have a disability, who are different and who are the outcast. I learned to be patient with people who take longer to communicate and I knew the value of friendships with everyone. Jake has learned that at the age of 9. Many adults have not.

After his first day of school this year, Jake excitedly told me that his classroom is across the hall from the "children who are like my sister" (his words). He spent his recess with two students who use wheelchairs and told them he has a sister who uses a wheelchair too. No hesitation, just pure acceptance.  While he has always been a compassionate child, he now knew how to interact with a non-verbal peer and undoubtedly he is teaching his classmates about that too.

Having a child who has a disability can be seen as a tragedy and a burden.  Those unfamiliar with our life can feel sorry for Jake (or our other children). They may feel sorry for Afua because of all that she's been through. But in their pity, they fail to see the beautiful and there is so much beautiful. There is nothing more tender than a little boy's sweet good morning song to his sister. Or the way her face lights up as she sees him returning from school. And while there is so much hard and sad and worry there is the other side too. A little boy who is learning about life right in our home. And his sister, who the world thinks can't contribute much, is the ultimate teacher to all of us.

Finding our routine

A new school year has started and this time I really struggled to find our fall routine. We have a junior in high school who goes on college campus 3 mornings a week (and does not drive yet).

We have a 4th grader who moved to a new building and leaves a bit earlier.

We have a 3rd grader whose schedule did not change.

We have a Kindergartner who is taking the school bus for the first time with her big brother.

And we also have our preschooler who goes all day 4 days a week, does not need a nap anymore and who lost her first tooth this week.

We have spent the past few weeks in open houses, phase in days, orientations and new routines. All the children come home in waves, each excited to share what they learned and spilling their folders all over the dining room table. I returned to work and took on additional students this year, which is challenging but so inspiring. I work in charter schools in urban areas and I compare their learning environments to my children's schools in the suburbs. It is not even close to being an equal situation. I could write so much about that, but for now, I will do my best to connect with each little one I come in contact with.

So life now consists of busy weeks, therapies and appointments starting and of course Friday night football games. Soccer games are happening and we are seeing such incredible character development from my competitive son. Most days I collapse on the couch from exhaustion and I dream of a respite that actually feels like respite. Or sleeping in past 7am. Life is so busy but so so good.