How to increase independence in a child with a disability (part 10)

independance
Let your child with disability do a load of laundry and so what if a white t-shirt got mixed in the wash with the brand new jeans…and it’s now light blue. That’s a lesson!

This is Part 10 of our 10-Part blog series about the challenges and experiences of the siblings of kids with a diagnosis. Be sure to check back for future posts in the series.

Read all posts from this series: Part 1 | Part 2 | Part 3 | Part 4 | Part 5 | Part 6 | Part 7 | Part 8 | Part 9 | Part 10

Our sibling series is coming to an end! As Jess pointed out in her last blog, families often walk a fine line between nurturing a child with a disability (like autism) and promoting their independence. As parents and siblings, it’s normal to want to protect the individual from making mistakes. But haven’t we all had a terrible relationship, bought shoes that were too expensive, or broken a wine glass? If we ALL made mistakes growing up, why is it that a child, teenager, or young adult with disability can’t? While we may want to protect them from any additional hardship (haven’t they faced enough already?!), doing so may also prevent them from achieving whatever level of independence they may be able to reach. Unfortunately, independence doesn’t happen in one day, and while these tips are meant for parents of children with a disability, they in fact apply to all children. The level of independence that can be reached will, however, depend on physical and mental limitations.

Here are a few tips to help you increase independence:

  1. Let’s all take a deep breath! Have a chat with overprotective siblings and explain to them that they have to let Junior gain some independence, and that might involve a few missteps here and there. And that’s fine…maybe you can take advantage of this to get the sibling to show some skills to their sibling (and then you get twice the load off you!)?
  1. Choose realistic target goals and break them down. We can probably agree that managing finances independently might not be the first step. But understanding the value of money and how to create a budget can be started early. When you go to a store, encourage your child to pay and take the change. As your child gets older, give him a budget he can use to buy a treat (how quickly do you think he’ll realize that the best and biggest chocolate bar is more expensive when he has to pay for it?). The same can then be done for buying clothes and shoes, doing laundry (have hampers to sort clothes, use pre-measured soap), setting the table and doing the dishes (maybe with unbreakable dishes; buy pods for the dishwasher so no measuring needs to occur), preparing food (start with easy sandwiches, then grilled cheese, followed by pre-packaged pasta and sauce, and maybe you’ll make it to a a more complex meal).
  1. Accept mistakes. Obviously, if you (or an older sibling) did everything, it’d be quicker, better, etc. But will you always be there? Or will a sibling want to do everything you’re doing for your child? So you let your child do a load of laundry and so what if a white t-shirt got mixed in the wash with the brand new jeans…and it’s now light blue. That’s a lesson! It’s not the end of the world if your child spent too much on a few items of clothing, and doesn’t have enough money to buy as many different outfits as you hoped. They are all great lessons.

We hope you enjoyed our Sibling Series! Stay tuned for our next series starting next week! Our team will be posting a Holiday Gift Guide for Kids with Special Needs!

Let It Go – Independence versus vulnerability (part 9)

autism_brother
It’s wonderful to see my brother reach milestones and see both his self-confidence and his autonomy develop.

This is Part 9 of our 10-Part blog series about the challenges and experiences of the siblings of kids with a diagnosis. Be sure to check back for future posts in the series.

Read all posts from this series: Part 1 | Part 2 | Part 3 | Part 4 | Part 5 | Part 6 | Part 7 | Part 8 | Part 9 | Part 10

Written by Jess Urcuyo

My brother has always been very positive that autism is just a part of who he is and how he thinks, much like having a British accent. These days as he continues to develop his strengths, learn new skills, and find better ways to accommodate his needs, he often speaks of ‘outgrowing’ his autism. It’s wonderful to see him reach these milestones and see both his self-confidence and his autonomy develop.

The reality is that as we’re seeing his amazing strides forward, he’s also finding opportunities for growth in new areas – maintaining a significant relationship, the value of money, knowing how much to trust new acquaintances – the list goes on.

No matter how functional a school education is, it doesn’t prepare young adults for some of the most challenging decisions and dilemmas they will face. There is a vulnerability in disability that should be acknowledged, but should it be always protected? Haven’t most young people had a tragic relationship, made terrible financial decisions, or hung out with the wrong crowd at some point, and doesn’t the life experience these situations bring make the person a stronger adult? Failure is a friend on the journey to success, and without the rite of passage to make one’s own mistakes it’s arguable that we never really learn.

autism_brother2
I hope that he achieves everything he dreams for.

We may need training wheels initially to help our balance, but we also need to pedal our own course, steer our own way, and know when to jam the brakes on. When we wipe out, family supports are helpful to get us back on our feet, but unless we experience the fall, we’ll never understand the importance of maintaining our own balance.

Does this mean the safety net is pulled away immediately a young person turns 18? I hope not! But do I ask that we consider turning the safety net into a support network of people who can facilitate the young person’s path to independence, and not necessarily avoiding the obstacles and hiccups they will face along the way? Absolutely.

While many typically-developing 20-somethings are happy to live with their parents, my brother is adamant that he wants the same independence he sees his siblings enjoy. I hope that he achieves everything he dreams for. He’ll always be my baby brother, but as he stands 6 feet, 3 inches tall, I look up to him with absolute respect for his drive to be the best version of himself.

Decoding “problem” behaviours in children with autism

problem_behaviour

Written by Kim Rose & Michael McCann (Autism and Behavioural Science students at Mohawk College)

Is your child exhibiting “problem” behaviour in the home or at school? Perhaps you’ve been wondering why your child with autism is exhibiting these behaviours and what to do about them, or even how to explain those to your child’s school?

Today, we reveal three behaviours we frequently see in children with autism and give you some ways to handle them:

  1. The classic “stimming”: The term “stimming,” refers to the behaviours that children may be engaging in in order to bring themselves to a “happy place.” If a child is in a set of circumstances that he or she finds very uncomfortable, such as being in a room with people he or she doesn’t know, the child may start engaging in behaviour that will make him or her more calm, such as hand flapping or screaming. Stimming can also be seen when the child is very excited. This is not an attention-seeking behaviour, so much as a way to self-regulate and calm down; it is also a way of communicating about how we feel in a situation (overwhelmed, anxious, excited, etc.). It’s important for parents to learn how to ‘read’ those behaviours to know what step of action to take: reducing sensory input, letting the child calm on his own, or just plain letting him show he’s happy! These behaviours will evolve with time as the child learns alternative ways of self-regulating.
  2. Escape: We’ve all been there as children – not wanting to do our chores and misbehaving instead: we would do anything to avoid doing those chores. That is what we call escape behaviour. If you child is running away or displaying behaviours when request has been made, your child may be trying to communicate with you. Maybe what you’ve asked is anxiety provoking or your child is engaged in something else that he does not want to let go. In those instances, try to see what you child CAN do. Maybe you can reduce expectations (for example, instead of eating all of their portion of vegetables, only have 5 bites) and reward their effort heavily with praise. And remember, practice makes perfect, and this is true for escape as well. If you child manages to escape, know that your child has learned exactly what to do next time he does not want to eat his veggies.
  3. Desiring “preferred” items, and nothing else: We all have our preferences (our favourite jeans, our favourite food, etc) – if given the choice, we may want to have those all the time! However, most of us understand we can’t. However, children on the spectrum tend to be rigid in their preferences and be unwilling to try something else. This rigidity often leads to meltdowns, which then create chaos in the house (been there?). In order to increase flexibility, the ‘first, then’ method can be used. For example, if you child only wants to eat the white pasta on their plate, and refuses to eat the carrots he used to eat, ask that a bite of carrot be taken first, then a bite of pasta. And praise! Same idea if your child always plays with the same toy: give another toy first, and then give the preferred one. Flexibility can only be built with practice!

Always remember, no matter what the behaviour is, your child is trying to communicate with you on the level that he or she is capable of. If you’re having trouble finding what the function of a behaviour is and how to respond, make sure to consult with your child’s team!

Thinking of having another child to care for your child with disability? (Part 8)

Autism Sibling
75% of siblings who act as caregivers for an adult with a developmental disability say that caring is their full-time job

This is Part 8 of our 10-Part blog series about the challenges and experiences of the siblings of kids with a diagnosis. Be sure to check back for future posts in the series.

Read all posts from this series: Part 1 | Part 2 | Part 3 | Part 4 | Part 5 | Part 6 | Part 7 | Part 8 | Part 9 | Part 10

Jess brought up some important food for thought in her last blog…should a parent plan to have another child to become a carer for their child with a disability? That’s a difficult question to answer, since there so many variables need to be taken into account.

Here are the first two important questions to ask yourself before making your decision:

  1. What if the sibling isn’t willing to care for their sibling? Assuming that the sibling will be able to care for the child with a disability, one needs to consider whether the child will be willing to care for their sibling, and to what extent. Baby making being quite the lottery, it’s impossible to predict what temperament, personality and interests a sibling will have. On the psychological end, it is also important to consider the impact of the perceived responsibility of having to care for a sibling on a child, such as increased stress.
  2. What if the second child doesn’t have the skills needed to be a carer? Depending on the diagnosis, there may be a chance that a sibling would have the similar needs as the first child. A study published in Pediatrics (Ozonoff et al., 2011) showed that there is an almost threefold increase in risk for siblings of children with autism to also develop ASD; this risk was particularly high for male siblings and those who had more than one affected sibling. Research also shows that parents who have had one child with cerebral palsy, the risk of recurrence for cerebral palsy was more than nine-fold for a subsequent sibling (Tollanes et al., 2014). When a child’s disability is not genetically-related (for example, for a child with a traumatic brain injury), this would obviously not apply.

Now, maybe you always dreamt of having a large family? Or the joys of having a child, no matter what their abilities or interests are, is more important to you than the potential risk? These are important factors to take into account, as they will change your personal sense of satisfaction and well-being as a parent. The important distinction I would make would be whether you’re thinking of having another child, or planning to have a carer for your child with disability. A survey conducted in 2012 for Easter Seals showed that 75% of siblings who act as caregivers for an adult with a developmental disability say that caring is their full-time job. Moreover, 30% say they receive no emotional, physical or financial support from other friends and family. Ensuring that there is some support in place for the caregiving sibling would therefore be crucial. On the bright side, though, 80% of respondents reported having a close relationship with their disabled sibling which had a positive impact on their life. It would be expected that a sibling who had a good relationship with the child with a disability might be more willing to become a carer (see my last blog post on how to promote a positive relationship between siblings). But there’s never any guarantee. This is an important and complex decision; it would be difficult to expect a child to automatically step in as the carer, but this is a place where the siblings and the individual with a disability should be involved in the decision-making.

Don’t miss on our last week of siblings’ blogs, we’ll discuss the role of siblings in fostering independence!

Should a sibling be the carer for a child with autism or other disabilities? (Part 7)

Autism
Our family has realized that the designation of the ‘future carer’ role isn’t a one-time decision, nor is it necessarily an obvious one.

This is Part 7 of our 10-Part blog series about the challenges and experiences of the siblings of kids with a diagnosis. Be sure to check back for future posts in the series.

Read all posts from this series: Part 1 | Part 2 | Part 3 | Part 4 | Part 5 | Part 6 | Part 7 | Part 8 | Part 9 | Part 10

Written by Jess Urcuyo

“Should we have a second child to become the carer for our disabled child?” – I recently read this question on a parent support Facebook group. Clearly, it was a parent who is desperately trying to plan for the likely situation that their child with exceptionalities will outlive them as parents. A parent who realizes their child may continue to be dependent on others for help after they themselves pass away or are unable to continue the parent-carer role. A parent who may not have considered the impact this thinking could have on the life of their second child.

In my family, I’m the only girl and I trained to be a pediatric therapist. Regardless of the life choices my siblings made, if stereotypes prevail, I would be the obvious choice to become the dedicated carer for my brother’s future, right?

But what about the sibling’s choice? In a society where our governments are ill-prepared to support the strengths and needs of an aging population with developmental delays and/or autism, should a sibling of a child with exceptionalities be expected to become their dedicated carer in future years when their parents have passed away?

What about the choice of the person with additional needs? What if they don’t have a good relationship with the sibling dedicated to be their carer in future years? What if they need a different style of support than that sibling is able to offer to ensure they continue to develop their independence?

Bearing in mind the challenges we’ve previously explored, that our siblings often experience with identity, self-advocacy, and assertiveness, I encourage parents to consider future planning for each child in the family as an individual. Some siblings, such as myself, feel well equipped to be the designated future carer and have a positive relationship with their sibling with exceptional needs (such as Autism). Other siblings may not feel as well placed, may not have a good relationship, or for many other reasons, may chose not to take this role. Some families may choose to collaborate to provide support for the sibling with exceptional needs so that the responsibility doesn’t fall to one individual.

Any end-of-life discussion has the potential to be a heavy weight on people’s minds. In the case of a sibling who is dependent on their parents for support, it is an important conversation that is best started sooner rather than later to ensure everyone’s voice is heard and continues to be heard as life situations change.

In our family we’ve realized that the designation of the ‘future carer’ role isn’t a one-time decision, nor is it necessarily an obvious one. It’s an open conversation that will be revisited as often as needed, with all parties involved having a clear voice. When the time comes, we hope we’ll make a decision that is right for everyone involved. A decision that supports the independence and life choices of all the siblings in our family.

Check pack tomorrow for part 8, where we discuss things to think about if you’re considering having another child to become a carer for their child with a disability.

4 Tips to promote sibling relationships for children with disabilities like autism (Part 6)

Autism Siblings
Create opportunities for the siblings to share activities together, as equals.

This is Part 6 of our 10-Part blog series about the challenges and experiences of the siblings of kids with a diagnosis. Be sure to check back for future posts in the series.

Read all posts from this series: Part 1 | Part 2 | Part 3 | Part 4 | Part 5 | Part 6 | Part 7 | Part 8 | Part 9 | Part 10

Jess’ blog post from yesterday is a great illustration of the power of siblings. Jess did seem to have a budding Occupational Therapist growing in her early on! But, no matter what siblings’ aspirations are, they may be interested in being involved in the care of their siblings. Given that siblings will likely be in the lives of children with a disability (such as autism) longer than anyone else (after all, they are likely to outlive parents, and will definitely have a longer relationship than with any therapist the child might encounter), the sibling relationship is an important one to foster.

4 Tips to help foster the sibling relationship:

  1. Create opportunities for the siblings to share activities together, as equals. For example, this could involve drawing a picture, decorating cookies or creating figurines out of play dough. Make sure this is an activity where each child gets to make their own creation, rather than having the sibling be the assistant of the child with a disability. Respect for each other’s respective skills and abilities should be taught, to ensure this does not become a competition, but rather an acknowledgement that everyone is different and can do different things.
  2. Encourage your children as they learn to communicate with each other. This may not always be in a verbal way, or not always the way you would prefer they would communicate (and it may not follow what their therapist has recommended), but remember this is a special relationship…and having their own special way of communicating can be part of it.
  3. That’s also true for other activities: encourage creativity and do listen for the sibling’s opinion when the family is facing a problem. Siblings have an interesting perspective: not only do they know the child well, but they are also a child themselves. Maybe they’ll have an idea as to what is bothering their brother or sister, or how to overcome a problem.
  4. Make sure the nondisabled sibling does not get a disproportionate burden in the household. Siblings’ feelings of resentment can be a huge obstacle to a positive bond. Encourage them to have their own friends and activities, and do not make their list of chores twice as long because their sibling might not be able to help. Rather, find ways to insure everyone can participate in their own way.

Stay tuned for next week’s blogs! We’ll be talking some more about the planning for the future and the sibling’s role and perspective.

How I cultivated my relationship with my brother who has autism (Part 5)

Siblings with Autism
I encourage parents to provide opportunities and space for the relationship to grow on their own terms.

This is Part 5 of our 10-Part blog series about the challenges and experiences of the siblings of kids with a diagnosis. Be sure to check back for future posts in the series.

Read all posts from this series: Part 1 | Part 2 | Part 3 | Part 4 | Part 5 | Part 6 | Part 7 | Part 8 | Part 9 | Part 10

Written by Jess Urcuyo

Growing up my younger brother had an intense fear of his belly button being touched. No bathwater above his hips, no showers, no spot cleaning. Lots of swimming!

My parents had tried in vain to tackle this from all angles and there was no solution coming from any of the autism professionals we’d consulted. My sibling sense was growing strong…he needed us to turn bath-time into a mad science experiment. Thankfully, my parents gave me free rein to try my crazy idea.

I made a trip to Lush, a handmade cosmetic store that could hold a sensory seeker under detention for days without complaint. Returning with a menu of weird and wonderful bath bombs and bubble bars, I ran the tub for my little brother. He watched in awe as the water turned amazing colours, fizzing and bubbling like the day a prankster had filled the city fountain with dish detergent. Through laughing, learning, and letting him go at his own pace, we emerged victorious.

We replicated the success several times in the coming weeks. But the real success story wasn’t cleanliness. It was the trust that had been built between my brother and me. I was finally starting to understand how his brain worked and he was allowing me to push his boundaries. It wasn’t until his language developed sufficiently that he could explain the true nature of his fear. He thought his belly button was a hole directly into his abdomen. That’s some trust!

Since then there have been many situations where when others have hit a brick wall, my brother and I have been able to work together to a solution. Many siblings have a special bond, but in my experience of families with children with exceptional needs, often a sibling becomes their closest ally.

Where siblings choose to go further to understand and support their brother or sister with exceptionalities, I encourage parents to provide opportunities and space for the relationship to grow on their own terms. To cultivate unconditional security between siblings, in which parental priorities can be skewed and house rules bent a little. And to encourage creativity to experiment for solutions.

How to explain a diagnosis like autism to siblings (Part 4)

Autism Diagnosis Conversation
Parents are often also concerned about the impact their child’s difficulties has on their siblings.

This is Part 4 of our 10-Part blog series about the challenges and experiences of the siblings of kids with a diagnosis. Be sure to check back for future posts in the series.

Read all posts from this series: Part 1 | Part 2 | Part 3 | Part 4 | Part 5 | Part 6 | Part 7 | Part 8 | Part 9 | Part 10

One of the first questions parents often ask me is how to talk about a diagnosis to the child who is concerned. That’s a big question on its own. Parents are often also concerned about the impact their child’s difficulties has on their siblings, and wonder what they should say, if anything at all.

Jess’ experience is a great example of how information about a diagnosis can be shared. No ‘Big Conversation’, just learning as we go along- for everyone! As the child improves on certain skills, and struggles with others, more explanations will be need to be given. The important is to insure lines of communications are open- if anyone has questions that are are asked respectfully, they should be answered.

But just how much can be said-and how? This really depends on the age of the sibling. Here are some pointers:
  • Children ages 2-3: Clear, short and simple explanation focusing on the behaviours and ‘Why’. For example, ‘Johnny finds it hard to talk because his brain works a little differently.’
  • Children ages 3-6: Illustrated books can be a great way to foster understanding in non-judgemental ways. Here are a few ideas:
  • Children ages 6-9: Books are still a great idea. At this age, children are able to understand more abstract ideas and concepts. They may ask about whether it’s possible to catch whatever disability their sibling has and understand that all of their sibling’s difficulties come together and have a name (e.g. cerebral palsy, autism, etc.).
  • Children 9 and up: Older children and adolescents are now capable of understanding in more depth their siblings difficulties. As mentioned in my previous blog, acknowledging their experiences as siblings is very important. Children in this age range may benefits from books like ‘Views from Our Shoes’, which consists of essays written by siblings of children with a wide variety of disabilities. More detailed written information (which can easily be found online) regarding the characteristics of children with a similar disability can also be useful.

Check back next Wednesday for The progression of my brother with autism and my relationship (Part 5).

How I learned about my brother’s autism diagnosis (Part 3)

Autism
Our parents made the brave decision to share their journey with as they were learning.

This is Part 3 of our 10-Part blog series about the challenges and experiences of the siblings of kids with a diagnosis. Be sure to check back for future posts in the series.

Read all posts from this series: Part 1 | Part 2 | Part 3 | Part 4 | Part 5 | Part 6 | Part 7 | Part 8 | Part 9 | Part 10

 

Written By Jess Urcuyo

Here’s how it went.

Them: “Do you want the good news or the bad news? The bad news is we won’t be getting the donkey we were planning for. The good news is you’re going to have a baby brother!”

Us: “Woah…hold the phone…we’re not getting the donkey?”

When my younger brother was born, my parents knew something was a little different. As he developed, they continued to see red flags that later turned into a diagnosis of autism. Despite being 7 years old when he was born, I don’t remember the Big Conversation about the fact he had autism. Neither does my older brother. Because there wasn’t one. The only Big Conversation we had was the Donkey Conversation.

Our parents made the brave decision to share their journey with as they were learning. Brave, because they didn’t know route or the destination. They reasoned that by being open with us about my brother’s challenges, we would all be more accepting of his needs. They would tell us ‘his brain is wired a little differently’ or ‘he just learns in a different way’. They would point out how we were also different. As they learned more, so did we.

We learnt as a family, and that included our grandparents. In fact, it was my grandmother who first saw a poster describing what autism was, recognizing her youngest grandson in the blur of words.

In time, we learnt that autism was just a way to describe the things we already knew about our brother, that he’d get more help at school if he had a label, and what the heck a label was anyway.

Our brother learnt what autism was too. Occasionally he’d use it as an escape route to avoid things he didn’t want to do, but more often it would give him a framework. A framework to understand a world that is wired a little differently, that just learns in a different way.

These days, the choice to disclose is up to him. It’s his medical record after all. There’s no need for a Big Conversation…unless of course that donkey is still available. Now we’re talking!

Check back tomorrow for How to explain a diagnosis like autism to siblings (Part 4)!

 

Are video games associated with depression in preadolescents?

VideoGames_Depression

Written by Marie-Eve Dubios

Well, it sure sounds that way according to a recent study conducted at the University of Texas Health Science Center. While there is a wealth of research showing how exposure to violent video games leads to increases in aggressive behaviours, the study conducted by Dr. Susan Toladero and her colleagues (2014) was among the first to show that preadolescents who are exposed to violent video games for more than 2 hours per day are also at risk of becoming depressed.

Why would that be? There’s a few reasons for that, in my opinion. A big part of this is that spending more than two hours per day playing violent video games cuts into time for positive interactions with friends, which are crucial at that age. Indeed, social isolation is an important contributing in the vicious cycle that is depression. Once a person becomes socially isolated and spends long periods of time playing video games or engaging with social media, they are likely becoming increasingly sedentary…which is bad news since reduced sleep and lack of exercise also contribute to risk for depression.

What can be done, then, especially when talking about those video games is such a big part of a child’s social interactions?

  1. Placing limits on the number of hours of screen time, especially for violent games. Indeed, the same study showed that symptoms of depression were not increased when children played less than two hours of nonviolent games per day.
  2. Encouraging physical activity: not only does it keep us fit, but it makes our brain release endorphin’s, which make us happy.
  3. Encouraging interaction with peers outside of video games.

For most children and adolescents, these small tweaks will be sufficient to decrease their risk of depression. However, if you find yourself struggling with encouraging your child or teenager to make these changes, or if they experience more severe symptoms (decreased interest in activities, lack of pleasure, difficulties to concentrate, low energy and poor self-esteem), it may be best to look for professional help. Depression tends to have a chronic course, with more symptoms and recurring episodes only increasing the risk for future bouts of depression. Getting help early not only helps in reducing this risk, but also in giving children and teenagers the tools they need to take care of themselves.