Young and vivacious Rachel Brewer graduated with a theater major. She later met and married Cole, a handsome helicopter pilot with a calm and laid back nature that matched his slow, easy grin. Knowing he would be deployed for long seasons of time, they anticipated the forced separations of military life to be the most challenging obstacle they would face.
What they could not know in their early years together was that their beautiful blond haired firstborn, Ava Belle, would be diagnosed at twenty months with a rare neuro-genetic disorder characterized by severe intellectual and developmental disability, sleep disturbance, seizures, jerky movements and frequent laughter or smiling. Angelman syndrome occurs in one in 15,000 to 20,000 live births. It is named after the British pediatrician, Harry Angelman, who first described the syndrome in 1965. People with AS are sometimes referred to as “angels”, both because of the syndrome’s name and because of their happy appearance.
Angelman syndrome occurs in one in 15,000 to 20,000 live births.
Ava, now seven, is a beautiful child. Her loving and outgoing disposition shines through in spite of her inability to verbalize her thoughts and feelings or to perform age appropriate functions. Ava suffers six types of seizures, frequent sleep disturbances and a severe lack of fine motor skills. She needs constant care and an environment that is equipped with measures to ensure her safety. Loving Ava is easy but caring for her is hard.
So much of the Brewers’ lives revolve around the schedules, needs, comfort and care of their permanently disabled daughter. Yet both of them lead rich, full lives with what seems to be a peaceful acceptance of their “new normal”. Rachel is still young and vivacious. Cole is still charming with his easy, dimpled grin. And their four-year-old son, Archer, is a beautiful blend of both. He loves playing with his older sister and explains to people that “she speaks her own language”.
Loving Ava is easy but caring for her is hard.
The Brewers are not that uncommon in that one in five families have a child with special needs of some kind. That spectrum can range all the way from children who appear normal but have slight learning or emotional disabilities to those whose challenges are more severe and obviously apparent. Because we are often unsure of how to react or what to say when we meet children whose appearance or behavior is out of the norm, we sometimes hesitate to speak, acknowledge or interact with the child or his family. This can cause families with special needs children to feel isolated, abandoned and alone. And for any of us that is not a good way to feel!
“Admittedly,”says Rachel, “parents of special needs kids need to have tough skin.” But because she IS so open about her life and so proactive in promoting awareness and understanding of her daughter’s condition, I asked to sit down with her last week to discuss how we can all do a better job of bestowing honor and dignity to families like hers.
One in five families have a child with special needs of some kind.
She showed me a card she had made up which she carries with her and hands out to people who are curious about Ava’s condition. An outgoing person by nature, she chooses to take the initiative in establishing rapport and alleviating any feelings of awkwardness or discomfort. The cards she uses look like this. I thought they were a brilliant idea!
Not every parent, however, is as adamant about breaking down those walls of confusion and curiosity to create a comfortable exchange between the outside world and their world. Rachel excels at being an advocate for her child. She’s smart, articulate and a wealth of information on various disorders but especially the one, of course, which affects her precious daughter. Having encountered reactions that have ranged from mild curiosity to thoughtless rudeness, Rachel is a champion of all families living with and loving a child with special needs.
When I asked about which things are helpful and which are hurtful from the public she responded that being ignored or dismissed is one of the most painful and that being approached and acknowledged with a genuine, kind spirit is the most positive response she encounters.
Being approached and acknowledged with a genuine, kind spirit is the most positive response she encounters.
Like many special needs children, Ava’s expressive language and receptive language skills differ. What this means is she (and many children with other disorders) understand much more than they are able to communicate. For this reason, Rachel suggests that we take the “least dangerous assumption” and assume there is a level of competence and understanding in the child.
“Say hello to the child first,” she suggests. “Touch their head or their hand so they at least know they have been acknowledged.” Like any mom, Rachel says the easiest way into her heart is to be kind to her child. Talking to Rachel, I learned how important it is that we recognize every child is a person and has feelings and understanding, to whatever varying degree that may be. This is so much better than just ignoring their presence, looking the other way or attempting to avoid them completely because we are unsure of what to do or say.
When I asked what an appropriate response would be from someone who was curious about her child Rachel suggested saying, “May I ask about your child’s condition?” Spoken from a kind and sincere heart, this phrase opens the door of communication and creates ease. “And just like every parent,” she says with a smile, “we like talking about our kids.”
In general, we can never go wrong living by the Golden Rule: Do unto others as you would have them do unto you. (found in Luke 6:13) It would be hard to feel valued if you or your child were consistently ignored. Communication may be difficult with a special needs child because as Archer says about his big sister, “She speaks her own language.” But I am reminded of the words of I Corinthians 13, “If I could speak all the languages of earth and of angels, but didn’t LOVE others, I would only be a noisy gong or a clanging cymbal.” Understanding Ava is hard but loving her is easy.
Let’s not fail to give the greatest gift. Matthew 25:40 “The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me’.” Taking that scripture to heart, I know that ultimately loving Ava is loving Jesus.
Lord, help me to speak the language of love . . .