Posted on: May 4, 2020 at 5:42 pm
Last updated: May 4, 2020 at 9:39 pm

Every soon-to-be parent wants the same thing: to have a happy, healthy baby. News that your child is to be born with any type of physical or mental disability is difficult to hear. The tests, surgeries, and medical challenges that you and your child face are one thing, perhaps the more challenging are the emotional struggles that you will both face. 

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Will my child be able to be in a normal classroom?

Will the other kids make fun of my child?

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Will my child be accepted into society?

There’s no doubt that people with disabilities lead more complicated lives. This is made worse when these children are denied their basic human rights. This is exactly what happened to little Sofya Zakharova.

No Deformities Allowed

When 2-year old Sofya’s mother Svetlana went to enroll her into preschool in their village of Alatany in Russia, she was told that her child would need to receive surgery first. Why? Well, because her deformities may scare the other children. (1, 2)

It is reported, though not confirmed, that Sofya suffers from a genetic developmental disorder known as Apert Syndrome. (1, 2)

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Read: Champion Gymnast With Down Syndrome Becomes A Model, Paving The Way For Others Like Her

What is Apert Syndrome?

Characterized by skeletal abnormalities, Apert Syndrome is a genetic condition that results in the premature closing of the bones in the skull, among other things. This prevents the skull from forming properly and affects the shape of both the head and the face. (3, 4)

Characteristics of Apert Syndrome include (3, 4):

  • A sunken appearance in the middle of the face
  • Beaked nose
  • Wrinkled forehead
  • Cleft palate
  • Underdeveloped jaw
    • May cause missing teeth, irregular tooth enamel, and crowded teeth
  • Vision problems
    • Bulging eyes, wide-set eyes, down-slanting outer corners of the eyes, eyes that don’t look in the same direction, and shallow eye sockets.
  • Malformed ear structures
    • May cause hearing loss or frequent ear infections
  • Breathing difficulties
  • May have mild to moderate intellectual disabilities
  • A fusion of some or all of the fingers and toes
  • Restricted movement in one or both sides of the body due to abnormalities of the shoulders and elbows

Treatment depends on the individual child’s needs, but the sooner it is addressed after the child is born the better the situation will be. Several surgeries may be necessary as well as psychosocial support to help the child through cognitive, academic, developmental, and emotional difficulties they may have. (3, 4)

Read: ‘What’s wrong with her fingers?’ my husband asked. ‘They look strange, but they’re perfect.’ Then he saw her toes.’: Parents surprised by daughter’s Apert Syndrome diagnosis, ‘she just wants to be loved’

No Support for Sofya

Svetlana, husband Rasul, both sets of grandparents, and little Sofya live all together in a home that has no heat, running water, stove, or gas. Rasul works, but it is not enough to afford the trip to Moscow to have the required surgeries done. The Zakharova’s have received no help from the government. (1, 2)

Local charity Rainbow Goodness worked to push the school to accept Sofya, but they were ultimately unsuccessful. They were, however, able to get the attention of local politicians, who have now intervened to help the child and her family. (1, 2)

“It’s already clear that the rights of the child and parents are violated, and there will now be an appropriate legal assessment.” Said the head of the Republic of Bashkortostan, Radiy Khabirov. (1)

Unfortunately, even in countries with better support options for children with disabilities and their families, being accepted into society is still all too common.

Read: Dentistry Student Shares Touching Story of Being Raised by Father with Down Syndrome

How to Teach Your Child About Disabilities

According to Jan Faul, M.Ed., it is perfectly normal for children to be curious, confused, and yes, perhaps a little bit intimidated when they see someone with a disability or physical deformity. 

“When children are born they look for consistencies in their environment. At 5 months, children know that people move themselves around a room and that chairs don’t. People pick up chairs and move them. So then if a child sees a person sitting in a wheelchair, for example, and the wheelchair moves the person around, the child seeing this occur is taken aback, not knowing about this particular phenomenon.” (5)

Once a child learns about those differences, they will start seeing the similarities they have with that person and will no longer be afraid. The more a child knows, understands, and spends time around people with disabilities, the more comfortable they will be. (5)

There are several things that you, as parents of children without disabilities, can do to help your child become an ally to kids who do have them (5, 6, 7).

  1. Consume media with stories that include children and people with disabilities.
    Read books and watch movies and TV shows that are about or include characters who have a variety of disabilities. When you do, be sure to talk to your child about those characters. Explain to them how people with disabilities are all unique individuals, just like those who don’t have them. Let your child know that while sometimes people with disabilities might need extra assistance, they should be treated and spoken to in the same way as everyone else.
  2. Schedule a playdate.
    The more time your child spends around people with disabilities, the more they will realize that they are humans just like the rest of us. Invite a child with a disability in your child’s class over for a playdate, to a birthday party, and other events. In this scenario, both children will benefit.
  3. Talk about the differences.
    Yes, people with disabilities are different, and that is perfectly okay. It is also okay for your child to feel nervous or afraid at first, and it is natural for them to have questions.that it is okay to be afraid at first, but then assure them that there is nothing to be afraid of. (5, 6, 7, 8)
    Do some research and teach them about different disabilities. Allow them to ask questions. Ignoring the differences and saying that a child with a disability “is just like everyone else” is not only incorrect, but it does harm for both your child and their classmate. Instead, focus on how you can both benefit and learn from each other’s differences, just like you can with any other person.
  4. Talk about the similarities
    There are plenty of similarities to point out to your child. For example, they both have two eyes and ears, they both have a mouth. How about feelings? Or whether or not they like to play games, listen to music, or laugh at a funny joke? After all, at the end of the day, a person with a disability is still a person, and their disability isn’t their entire identity. (5, 6, 7, 8)
  5. Encourage questions.
    If your child has questions about a classmate with a disability, encourage them to ask it. Be sure to teach them how to ask the question first, by teaching them the correct words to use, such as the name of the child’s disability, and which ones not to use, like “sick”, “wrong”, or “not normal”.
  6. Be a Role Model
    Children watch their parents closely and model their behavior after them. Use this as a tool to show your child how to properly interact with people who have a disability.

Read: 33 years On, This Father Still Fights For His Daughter After Shocking Diagnosis

The Bottom Line

Your child is allowed to be curious about people with disabilities, and the more that you speak openly and honestly about this with them, the better off they will be. It is also important to understand that you don’t necessarily have all of the answers.

If your child has a classmate with a disability, go to that parent directly and ask for assistance. They can give you some tips, and perhaps even come over to your house with their child and facilitate a playdate and learning session for all of you. There are also plenty of experts and learning resources for parents to use. 

Not educating your children about disabilities does a disservice to both your child and any person they meet with a disability. The more exposure your child has, the better off everyone will be. An educated child becomes an educated adult, and perhaps with that, cases like Sofya’s can be avoided.

Keep Reading: I’m Documenting Myself Slowly Dying From A Rare Disease To Show Why Euthanasia Should Be Legalized

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Julie Hambleton
Nutrition and Fitness Enthusiast
Julie Hambleton is a fitness and nutrition expert and co-founder of The Taste Archives along with her twin sister Brittany Hambleton.

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