Redefining Disability Week 12: Describe the biggest challenge you face due to disability

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As a parent of individuals with special needs, the biggest challenge I face due to disability is helping my children build authentic friendships with their peers. My boys exhibit many of the characteristics of autism:

  • difficulty with eye contact
  • Lack of an understanding of personal space
  • Lack of inhibitions
  • Insatiable curiosity regarding one particular topic
  • Difficulty maintaining interest in topics they don’t know or understand
  • Difficulty reading emotion and other social cues

Let me be clear that most people treat my boys with respect and extend infinite patience in carrying on conversations with them. One of my boys is passionate about vehicles. He knows all the makes and models, reads the consumer reports, and can tell you which ones are recommended. He will stop anyone and everyone and carry on a conversation about vehicles. If people ignore him, he just gets closer and repeats his question.

Adults understand this type of behaviour and carry on a conversation. Peers expect to have a conversation that may include a discussion about vehicles, but will also include many other topics. When this doesn’t happen, peers tend to respond in one of two ways: avoidance or interaction based on pity. Some peers will answer one or two questions and then move on. Others will continue to reach out, but the relationship is more of an older brother or sister dealing with a younger sibling.

I’m not sure my sons recognize what they are missing. Is that a good thing? Yes, in that the sting of rejection is not felt by them. No, in that there is no motivation to change, except to comply with an adult who is telling them they should or shouldn’t do something. My boys are more than happy to lose themselves in a book or play on their iPads instead of conversing with peers. We all tend to stick to situations where we feel safe, and they are no different. The difference is that most people have a larger repertoire of skills to call on when dealing with social situations, especially difficult ones.

As a parent, there are many times I don’t know how to deal with this issue of helping my boys build authentic peer relationships. We’ve tried speech therapy, small group therapy, taking our boys to places they will be able to interact with peers, and modelling expected interactions. Sometimes we push our boys into situations they would not choose on their own. Other times we allow them to make the choices. I’m thankful for the people who make the time to interact with our boys, but I do grieve for them and hope that some day they will have a friendship based on more than choice and respect.

What is the biggest challenge you face in dealing with disability?


 

redefining-disability1

In 2014, Rose Fischer started a Redefining Disability Challenge. This year she is continuing to invite people to join the challenge by blogging about a set of questions she developed. I’ve decided to join this challenge and most Mondays (or Tuesdays!) will be answering one of her questions.


Redefining Disability Week 11: Describe a good day living with disability

A good day with disability

As a mother, I think my dreams and aspirations for my children are fairly normal. I want them to be able to have friends, fit into the community they live in, learn about things they enjoy, and contribute to society. I also want them to know they are loved, accepted, and appreciated – not only by me, but by the community at large.

Last Thursday was a good day. The school our children attend called on Tuesday to let me know a tubing trip was being planned and asked if it would be okay for Luke and Levi to participate. I confirmed I would be happy to have my boys experience the activity with their peers. Thursday morning, Levi said he didn’t want to go. We told him he needed to go any way, because we know that new activities are intimidating for him, but he usually enjoys them once he’s involved. We packed extra snacks, layers of clothes, and talked up how much fun it would be. Both boys left home with smiles on their faces. We heard nothing until about 2 p.m. Then we received pictures from an educational assistant. Both boys had smiles on their faces. The text said, “The boys had an awesome time. They spent every minute tubing.” (Sorry, but I can’t share pictures due to safety concerns with people who’ve been involved with the boys in the past.)

Saturday was another good day. On Friday, Levi told me that he’d like some pie. (I found out later that the math teacher had the students participate in activities that day related to Pi Day.) I told him we could make pies the next day. When it came to making pies, Levi wasn’t interested, but Luke, Jayson, and Dorothy were. Jayson and Dorothy worked together to peel apples. I helped core them and made the pie crust. After I rolled the crust out, Jayson put the apples into the pie and added the sugar, cinnamon, flour, and butter. Then I showed him how to moisten the edges of the crust so that the top crust adhered to the bottom. He also made a pattern on the crust which allowed the steam to escape while the pie was baking. Luke wanted lemon meringue pies. He helped me measure the ingredients into a pot, and stirred for a while. Then he worked with his dad to roll out the crusts while I continued to cook the lemon filling. Both boys were very proud of their pies.

It just so happened that I had an online meeting with executive members from InScribe Christian Writers’ Fellowship on Saturday afternoon. The topic of pies came up and my boys were able to show off their pies. The ladies oohed and ahhed over them. After the meeting, we all enjoyed a bowl of soup and then . . . pie and ice-cream. The smiles of satisfaction were all the thanks I needed. 🙂

Pies for Pi Day

I would love to know how my children would answer this question, but I doubt they would have an answer they could articulate. Since they were born with their genetic make-up, it’s a normal part of who they are; they don’t see themselves as “disabled” – and that’s a very good thing. They would probably describe a good day as having ice-cream, or making a trip to Edmonton. (We go to Edmonton, a 2 1/2 hour drive one way, for appointments at least once a month. Levi especially enjoys watching the vehicles as we drive, and can identify them better than anyone in our family, even Dad! We often go to a toy store after the appointments are done. Sometimes we just look, and other times each of them are able to choose something up to a certain price.)

I’d love to hear what a good day looks like in your world. Let’s celebrate those good days together!


redefining-disability1

In 2014, Rose Fischer started a Redefining Disability Challenge. This year she is continuing to invite people to join the challenge by blogging about a set of questions she developed. I’ve decided to join this challenge and most Mondays (or Tuesdays!) will be answering one of her questions.


Redefining Disability Week 1

 

redefining-disability1

One of the benefits I enjoy most about writing and blogging is meeting other people who share my passions. One of my blog hop participants is Rose B. Fischer. Last year she started a Redefining Disability Challenge. This year she is continuing to invite people to join the challenge by blogging about a set of questions she developed. I’ve decided to join this challenge and most Mondays will be answering one of her questions.

 

Redefining Disability 1

My first up close and personal introduction to disability came sixteen years ago with the birth of my amazing niece, S. Due to complications at birth, she lives with Cerebral Palsy. She uses a computerized communication system similar to PECS, and has also learned how to send and receive text messages. She is dependent on help for all of her daily needs, but she now owns a motorized wheelchair she can control with movements of her head, and uses it whenever she can.

Her parents describe her as a disabled person with an able-bodied mind. Nothing is too challenging or difficult for her to at least try. She is a vivacious person who is limited only by her uncooperative body. If she can find a way to do something, she will.

Twelve years ago twin boys began educating me about the very personal challenges of special needs children and their families. L1 and L2 were born at 27 weeks gestation and spent the first four months of their lives in a neo-natal unit. A nurse who worked there at the time informed me the nurses took only four hour shifts with them because their needs required so much care. The doctors did not expect them to live. We met the boys months later when they were placed with us. We were told they had global developmental delays:

  • Crawled at 18 months
  • Learned to feed themselves at 24 months
  • First steps at 27 months
  • First words at 4 years of age

Several months after we adopted the boys, we learned they also have Trisomy 15. The first pediatrician who saw the twins predicted they would never be able to walk, talk, or feed themselves. We are grateful they have achieved all of those skills and more. However, we find we still have to work hard to advocate for their needs to be met.

L1 is very friendly and outspoken (even blurting out answers in church) and loves anything to do with animals. He constantly tells me I’m the best Mom in the whole world. L2 tends to be more of a loner, but is a real tease who loves to push his brother’s buttons until he gets a reaction. L2’s passion is vehicles – he knows all the makes and models, whether they are 2-wheel drive, 4-wheel drive, or all-wheel drive, etc. I’ve learned more about vehicles in the last few years than many guys 🙂

When the twins were five, we were able to adopt their brother. J also has Trisomy 15, but has fewer obvious challenges. His abilities are scattered, so sometimes people think he is capable of more than he is, which leads to frustration on both sides. He is passionate about hockey and has an amazing ability to remember facts.

Our youngest daughter was born with moderate hearing loss and is extremely near-sighted. A heart condition was diagnosed, but disappeared within the first year of her life. D is full of spunk, but very shy. She loves to help both Mom and Dad.