Inclusive Living

How to help your special needs child feel like they’re part of society

Few things hurt as much as seeing the world shun your child.

This week I found myself thinking about the role of friends as I was trying to work out how I can facilitate Emma’s inclusion into “normal” life. A life that includes true friendships. 

We all know that society often views differently abled children as inconvenient burdens – even parents are at fault for thinking this. This has led to a culture where special needs people are often marginalised and “exceptionalised” in special schools, workplaces and living facilities. 

While these attitudes are challenging, it’s also true that the barriers to communication and engagement are often insurmountable. Emma is a quadriplegic and communicates using her Tobii eyegaze device and a communication board. This is wonderful and I just love seeing her write: “You buy me” to remind me of school supplies she needs or “pink cat” to tell me about a craft project she worked on at school. 

These moments are such highlights for us and it got me thinking how I could help her use these skills to facilitate her making friends. Emma loves other children and even though she cannot physically play with them, she is always very animated when watching their antics and participates where she can. My heart is full when I see how this little girl enters a room full of questioning stares with the bravest smile on her face. She gives it all she’s got. I want to make it easier for Emma to cultivate friendships. I want her to be included as a wanted member of society.

In this blog I would like to share some ideas on how I work to include Emma more.

  1. Surround your child with those kids who are willing to accommodate him or her

I have noticed that because of Emma’s challenges, other children find it hard to include her in their play. She is often left behind as they move on to activities that makes it impossible for her to participate or observe. In contrast, I have seen other children who make a point of adjusting their activities to include her more. What makes these children different? 

I believe that what these kids have in common is a parent with an inclusive attitude. These parents teach their child to be aware of the needs of others and to adjust accordingly. This sort of adjustment does not come naturally to humans as we are selfish by nature. But when we do make this shift, we can make miracles possible. Friends like these punch their way in through the obstacles that disability represents. (Kids who learn this, go on to become great assets to society.) Seek these people out and surround your child with them.

2. Work on “yes” and “no” 

Before Emma was able to communicate, even before she was able to vocalize sounds, we had limited means of communication. Thankfully the hours of our home-based therapy started paying off which helped her move her head voluntarily. At first she could only nod. Later she started shaking her head for no. These two words are critical for all kids, no matter how severe the brain injury. I would say this is the starting point for everyone. Teach other people what your child is signaling so that they can also communicate with him or her.

3. Create a simple spelling chart or communication board

While the Tobii is key to communication among our inner circle of family, therapists and teachers, for some it’s not that easy to use. So, Sonja Higham, from SpeaktoMe, helped us make a simple communication board that can be used by anyone who isn’t in regular contact with her: extended family, other children, babysitters etc.  

This is a simple laminated board that has the letters of the alphabet grouped in groups of six printed on various colour blocks. Emma first chooses the large colour block and then the letter. We point at them and she tells us which one she wants. The board also includes a block for a space and to delete a letter.

4. Play table-top games

Board games table-top games are a winner because they are a stationary activity. Kids love them! We are in the process of helping Emma use the Tobii to interact with instructions for various board games. This is a great way of showing other children Emma can “talk”.We have had a lot of fun with “Simon says.” We programmed the Tobii with various instructions that she can control. Emma then tells other kids what she wants them to do. Monopoly also works – we move her play piece around and all the has to do is to say “yes” or “no” to buying a property! In addition to board games, Emma also plays play dough and barbie. We include her by letting her choose actions, colours or clothing items.

5. Help the world see your child’s personality

This has been a real challenge because Emma tends to vanish in a crowd. I know this is a problem for so many people with kids on the severe end of the spectrum. The solutions may not be the same for you, but here are some things that have helped for us, and as she’s grown in confidence, I am able to try more. 

I have used the Tobii to help Emma communicate pre-prepared messages to others. She has used her Tobii to deliver lines in a school play, she also was the “narrator” in a Christmas play at home and she even delivered her school project presentations using the Tobii! This year she thanked the other children for coming to her birthday party on her Tobii.

I also think that non-verbal cues to the world about your child’s unique personality is important. In Emma’s case this includes always wearing pink and having a pink wheelchair with fairies on the wheels! ( if you have a standard issue chair you can always “pimp” things up with the help of innovating companies like izzy wheels!

While this strategy does not always fall on fertile soil, it has paid off with others. Every so often a child will visit us and sits happily next to Emma while talking to her non-stop. Emma can’t stop smiling when this happens and nods along vigorously and joyfully.

6. Provide an inclusive environment

I was recently confronted by an enquiry of friend. She asked a question that shocked me: “Why is Emma not in the same school as your son?” 

I admitted that the thought had never crossed my mind. My son goes to mainstream school and I listed all the issues and potential obstacles, such as the lack of ramps and lifts, and that I can’t burden others with my problems by asking for such a huge adjustment for my child. 

Her response stopped me in my tracks: “You know, steps are just steps. All you need is the willingness of both parties to make it work and you are already two-thirds of the way there. The question is not, what will it cost to have your child in this school? Turn it around and make the conversation about what others will gain by having your child in their school.” 

I still have not integrated Emma as much as I would like, but every Sunday we carry her wheelchair up two flights of stairs for her to join her Sunday school class.

7. Educate people

When Emma was little I tried to hide away from public situations. I disliked the staring and the questions, especially those from other children. One day I realized that this attitude was not in Emma’s best interest. So I changed. I started walking with pride as I wheeled my beautiful daughter through public places. I smile at everyone, even those who stare. I tell people our story and try to show people how to include her by example.

If you are not much of a talker, take heart! There are great resources available such as this powerful film, about a boy called Ian whose friends will punch their way through all the barriers to help include him. This film was made to show typical children what it feels like to be marginalized. 

Emma has been lucky as we have been blessed with some wonderfully caring people in her life- including a few very special friends who always invite her to their birthday parties and play with her on play dates. Hopefully these relationships will remain and grow stronger as she grows older. 

Talking about sharing- I wonder, what sort of strategies do you use to facilitate inclusion for your child? Any pearls of wisdom? I would love to hear them!


 

2 thoughts on “Inclusive Living

  1. Dear Erika, reading your posts I realize over and over again that there is purpose for everything and everyone in any situation. You are the best what (or who) could happen to Emma. On the other side without Emma you will not be able to understand the needs of children with CP and help them. I allways admire your courage, your passion and dedication, and first of all your love to your daughter and everyone in needs. You never give up, at many stages even when there is no hope seams to be, you just keep going. Thank you for telling in this post how we can contribute, too. You are truly a treasure, a rule model and just the right person to do that what are you choosen to do. Bess you!

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    1. Thanks so much for the kind words. I guess we all just do the best we can. I can’t say that I have survived these times from my own volition- I have been blessed with wonderful people and of lots of grace. 🌸❤️

      Like

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