How To Help Your Disabled Child Cope With Mood Swings

It is very common for disabled children to have mood swings. Low mood, anger and sadness are all common emotional states for disabled children to experience.

Your child’s mood is no reflection on you as a parent or their feelings toward you.

You’re still the target though and that is because you’re the closest target.

It is nothing personal and not reflective of your child’s true feelings toward you.

That being said, it is still not a great thing to go through.

What Causes Mood Swings?

For disabled children, mood swings are often linked to their conditions and this can sometimes be the case.

However with conditions such as Cerebral Palsy, although low mood and anger are common, they are not necessarily directly linked to the condition.

So what are the causes?

Well for children with physical impairments the causes are often more environmental. This is particularly true as the child gets older.

Here is a little insight into how they might be feeling.

When you are much younger and have a physical impairment, it can be tricky to notice the difference between you and other kids.

Everyone stays in, they play with toys and it is easy for physically disabled kids to feel on a level playing field.

Then things begin to change…

The child begins to get older, they see their peers become more active. Often they see kids playing on the street, they see them running, climbing, exploring and the differences become more apparent.

Frustration and anger are easy emotions to understand in this respect – your child is perhaps becoming aware for the first time that there are real differences between them and others.

What can be sometimes more difficult to understand is the sense of loss.

The old saying goes that you never miss what you never had…

That might be true in some cases but if you can see the people around you with something, then that is more difficult.

You can see the difference and you can feel it. Then it easy to wonder what you might not have in the future.

This is where the phrase, “I wish that I had not been born like this,” comes from.

Frustration

Anger

Mood Swing emoji

Loss

A child with a physical impairment can cycle through these emotions in an instant.

Children with learning difficulties can have a slightly different experience…

Although those same emotions and situations might contribute toward mood swings, they can be more closely linked to their conditions.

For children with these conditions, their emotional states can be like a cup full of sugar. There is an endless stream of grains continually falling into the cup until it overflows.

Everything can feel too much. The lights, the smallest sounds to the way things move.

Techniques To Help

Every child is different so there will never be a one size fits all. That being said, here are some things that may help.

Time Outs

Sometimes, no matter what you say or do, if the child is that highly escalated, you just need to leave them alone. Create a safe space (if they don’t have one) and guide them to it.

Intense Interaction

Sometimes, if a child is highly escalated, either happy, sad or angry, they can pose a danger to theirselves or ours.

In this case, it can be good to use intense interaction, which creates a feeling of being grounded. Feeling grounded can be the first and foremost priority.

Does intense interaction work for physically impaired children?

Yes.

Distraction

Distraction can feel like your being a bad parent to a certain extent. But sometimes it is the only way.

What do we mean by distraction?

Distraction can be that favourite song, video or game. The conflict from a parental perspective is that you can feel like you are rewarding bad behaviour.

Or…

You are doing anything for a quiet life.

Neither of these feelings are true.

Trying To Parent During An Episode Will Never Work

Here’s the thing…

Trying to explain, change or challenge the behaviour during an episode is never a good idea. Remember the child is in a heightened state and you must wait for this to pass.

How To Approach The Aftermath

When the child deescalate, the key is what to say next and things like the tone of your voice etc.

Listen intently, find what the stimulus is and how your child might deal with it next time.

This is important for both you and your child. For you, it is about understanding the trigger points, which will make you more aware in the future.

For your child, it is about helping them understand how they are feeling, how they made you feel and what you both might do differently in the future.

Saying how you feel and ensure that your child understands that is important. Your child does care about how you feel, loves you and does want to see you upset.

Don’t Begin To Feel Anxious About Potential Future Episodes

Some episodes can be bad for you and your child. This is particularly true if something happens out in public.

However as a parent, if you begin to feel anxious about another episode happening in future, your child will pick up on this and begin to feel anxious themselves.

It may well feel tempting to avoid certain situations if for example, you associate them with certain triggers.

As I was writing this post – this came out:

Just because a child has the potential to have an episode – does not mean that they will.

And if they are struggling to control their emotions…

With good communication between the two of you, it can and will get better.

Here are some useful links:

https://www.mencap.org.uk/understandme/

Key Takeaways for Parents of Disabled Kids

Impairment identity can be a big help to you and your disabled child.

What makes us say that?

Well, one of the big things about growing up with a disability is that your disabled child can feel like the only person in the world going through their experiences.

What Is Impairment Identity?

This is why trying to talk to your child about the specifics of their condition, finding them role models and highlighting consistent things about their condition is important.

The Challenge

The challenge is with promoting impairment identity is that as parent, you are constantly trying to attach more and more unique labels to your child.

This is because, the more unique labels that your child has, the more support that you can potentially unlock.

So, the more labels that you acquire, the more that your child can feel that their circumstances are unique.

Conditions such as Cerebral Palsy are notoriously tricky here. This is because umbrella conditions such as CP have so much variety in them.

As a parent, it can be tricky for you to see similarities between your child and others, never mind them!

Children With The Same Condition Still Develop At Different Rates

This is why it is important for you as a parent to remember that disabled children still develop at different rates.

So..

Even if it appears that your child cannot do something that another child with the same condition can, does not mean that they never will.

Exposer To Impairment Groups Can Aid The Learning Process

It can be the case that exposer to the children with the same condition can aid this learning process.

The difficulty for you as a parent can often be that your child notices these differences and this can lead to negative feelings.

This is where you as the parent have to challenge your child conception of what is going on.

It is not that they cannot do it, it is just that they haven’t learnt how yet.

Try And Find A Range of Ages

Fears about the different stages of life can be common for disabled kids and their parents.

You can always find yourself asking questions like, “what are they going to be like when their older?”

Or

“How are they going to do this?”

From the child’s perspective, they can even begin questioning whether they want to grow up at all.

Or

They begin to feel left behind as other children get older and more energetic.

This is why finding people who share the same impairment identity across the age spectrum can be so important.

Seeing people living with the same condition across the age spectrum can help both you and your child feel more positive.

Where Do You Find Impairment Identity Groups?

This the trick, isn’t it?

Where do you find people who share the same condition as your child?

Well, there are number of places to look:

Social Media

Here are some ideas about people to follow:

Sophie Morgan – Sophie is a presenter for C4 and her social media tracks her everywhere. https://twitter.com/sophmorgTV

Mik Scarlet –
Broadcaster, Journalist, Actor, Musician, Access/Inclusion Expert & Wheelchair User. https://twitter.com/MikScarlet

Dr Frances Ryan – Guardian columnist. Highly Com’d Specialist Journalist of the Year. https://twitter.com/DrFrancesRyan

Emma Steer – Emma is an award winning blogger and Youtuber. https://twitter.com/WheelsofSteer

Aaron Fotheringham – Aaron is an extreme wheelchair skater who has taken part in Nitro Circus. https://www.facebook.com/AaronWheelz/

Organisations To Look At

CP Teens UK – “CP Teens UK is a supportive & accepting community for young people with Cerebral Palsyhttps://www.cpteensuk.org/

SNAPS Yorkshire – SNAPS (Special Needs And Parent Support) provides leisure support services for children with special needs of all kinds, and their families. Our aim is to support the entire family, by enabling the child, along with siblings, parents and other carers to participate in a shared experience of physical activity, fun and conversation in relaxed surroundings, supported by professional and dedicated staff. Our age range is from 1 to 16, although most of our children are aged between 2 and 10. https://www.snapsyorkshire.org/about/

Dice Yorkshire – We are a non-for-profit social enterprise based in Yorkshire that provides activities, events and services for people with a disability, predominantly adults aged 18 and above. https://www.diceenterprise.com/who-are-we

CP Sport – Cerebral Palsy Sport is the country’s leading national disability sport organisation supporting people with cerebral palsy and other physical disabilities to reach their sporting potential and putting people with cerebral palsy and their families at the heart of everything we do. http://www.cpsport.org/about-us/our-organisation/our-strategy/

Whether your new to being a parent of a disabled kid or you’ve been parenting for a while, it can still be difficult.

So we’ve put together some key things to keep in mind. This post comes from our new product – The Parents Guide.

It’s Okay To Grieve

As a parent of a disabled kid, it is always important to remember that is okay to grieve.

You probably had some many hopes for your child that now are not possible, and it is important to recognise this and mourn that loss.

YOUR CHILD’S CONDITION IS NOT YOUR FAULT

Thinking things like, “I did something wrong
or what if I did this differently?”, is not helpful
to either you or your child. There are a million different things that can cause/affect impairment, and impairment can and does happen despite your best intentions.

THERE IS NO RIGHT WAY

Your child will do things differently. They will not do things the ‘right’ way but they will do their way. It is important to encourage, support and play.

IMPAIRMENT IDENTITY IS IMPORTANT

Having an impairment related identity can be crucial to reducing loneliness and isolation, understanding their condition and overcoming barriers. By smartly using online support and looking around locally, your child can own their own condition.

BREAK THINGS DOWN TO SMALLER STEPS

Having a disability is one big problem solving exercise. However, some problems can seem so BIG that there is no obvious solution. For these big problems, you need to work together with your child and break things down and to their fundamentals. Things like travelling can seem impossible but if you plan it properly, it can be easier than you think.

THE DIFFERENCE CAN BE SUPPORT, PRODUCTS AND SERVICES

Proper solutions to problems are often a mix of different things such as knowledge (knowing your rights), products (little things that can help) and proper planning.

Check our page for parents here.

Find more advice and information at: https://contact.org.uk/

For a child with physical impairment making friends as he/she gets older (ages 7 – 12) can be really tough.

This can be a number of reasons such as:

Having a small social circle and maybe not having many activities outside of school can be really troubling for many disabled kids. It can also negatively impact their mental health as well.

So what can you do about it?

Adapted Sports

First of all, there are number of specialist sports/activities for disabled kids. There can be some travel involved but it can be very worth it.

See WheelPower and Cerebral Palsy Sport for some ideas.

The great thing about adaptive sport is that it can build your child’s self-confidence and give them a sense of what they can do. This is as well as giving them the opportunity to make friends inside those new groups.

There also some great new organisations such CP Teens UK, which was founded by a teen with CP is a great community for making friends in a safe environment.

Don’t Be Scared About Them Being Online

It can be scary for a parent, there child being online and while there are obvious dangers to it, there are also many positives to be found.

Such as this story – https://www.bbc.co.uk/news/disability-47064773

It can be liberating particularly for those who might have severely restricted mobility.

You might worry that your child is too young or that they are spending too much time on a screen, but these are all things that you and your child need to work out together.

Why PAs Can Help Your Child Make Friends

Getting personal assistant/carer, can for some parents feel like extra added stress. as it is just something else to manage/ take care of.

However, since the switch to direct payments/personal budgets, there is ever greater flexibility, including many support services for users.

So what are personal budgets?

Direct Payments/Personal Budgets are where your local authority gives you money directly to employ and manage your child’s PAs.

Now as stated above you might be thinking that this just extra added hassle, but it can be the best thing in terms of getting your child out and engaged in activities.

This is because you have the control and you can choose person who fits with your child’s personality. They may have similar interests, be similar in terms of age and this gives your child the chance to have a ‘friend’.

Now it is important to explain to your (if they can understand) that the PA is fulfilling a role. But for many people having a PA is great way to build confidence, communication and social skills.

For Older Kids Who Want to Make Friends

There are now a number of charities and social enterprises that specifically cater for ‘older’ kids.

We know Yorkshire a bit better than other places so sorry for the Yorkshire centric examples but please do look in your own area – there will be something!

Dice Doncaster offer a range of events for adults with a disability and their friends – including accessible night club events.

Downs and Special Friends offer specialist events for young people with any kind of learning difficulty across West Yorks.

Stay Up Late – create opportunities for disabled people in the south of England to go out and enjoy gigs.

We’ve put together some top tips for parents of physically disabled kids. This is an exact from our forthcoming guide for parents, and we excited to share this with you. This advice comes from lived experience from disabled people, parents and professionals. We hope that it helps.

  1. It is okay to grieve

You probably had some many hopes for your child that now are not possible, and it is important to recongnise this and mourn that loss.

  1. A child’s condition is not a parent’s fault.

?Thinking things like, ?I did something wrong or what if I did this differently??, is not helpful to either you or your child. There are a million different things that can cause/affect impairment, and impairment can and does happen despite your best intentions.

  1. There is no right way.

Your child will do things differently. They will not do things the ?right? way but they will do their way. It is important to encourage, support and play.

  1. Impairment identity is important.

Having an impairment related identity can be crucial to reducing loneliness and isolation, understanding their condition and overcoming barriers. By smartly using online support and looking around locally, your child can own their own condition.

  1. Break things down to smaller steps.

Having a disability is one big problem solving exercise. However, some problems can seem so BIG that there is no obvious solution. For these big problems, you need to work together with your child and break things down and to their fundamentals. Things like travelling can seem impossible but if you plan it properly, it can be easier than you think.

  1. The difference can be support, products and services.

Proper solutions to problems are often a mix of different things such as knowledge (knowing your rights), products (little things that can help) and proper planning.

For more information – see?https://www.canchild.ca/

I always feel like there is a lot of miss information out there. A lot of people seem to say a lot of different things and as a parent, it can be hard to know up from down. Here at EthosDisability.com, you can always be sure that our reviews and other content come from people in the know. That being said, I thought that I would take the time to share research that you might find helpful. The first piece that I am going to feature comes from the CanChild Centre for Disability Research, at McMaster University based in Canada. CanChild was founded in 1989, and is a world leading institution in terms of research for childhood disability. They have many interesting resources that can be accessed at: http://www.canchild.ca/en/index.asp

‘If I Knew What I Know Now,’ was a study done with parents who had raised children with Cerebral Palsy about their experiences. I am going to try and streamline the paper into a few key points; I’ll post a link to the full article at the end of the post.

 

  1. Make Time For Each Other

This was something raised by most people in the group. Having a child with a disability does place a massive strain on your relationship with your partner. It’s really important that you still devote time to one another.

 “Take time for each other. ’Cause it’s … really hefty on a relationship.”

 Parent of Abigail

  1. Knowing When To Let Go

Another point raised by everyone who took part was, how hard he or she found it to let his or her child be independent. They said that they were overprotective and this led their child to struggle in later life.

 

“I want for her the life that she wants for herself. And to do that I’ve got to let You know it would be selfish of me not to. But it’s so damn hard.”

 Parent of Irene

“I think I was just overprotective and yet, now thinking back …(It) really wasn’t fair to her you know?”

 Parent of Francis

 Now this research was conducted with a group of parents so if you’re reading this thinking, “oh god, this is me!” As an adult with a disability, I am here to tell you, don’t panic! I read this point and thought to myself, it just must be so hard to let go. Reflecting on it now, my own parents were perhaps a little over protective at times to. But you know, I don’t resent them for that, and your kids won’t either.

 

  1. Do Things For The Whole Family

Many of the parents in the study felt that they sometimes neglected the effect on the rest of the family. They particularly highlighted the effect it had on siblings.

“Certainly (older child) paid a price…‘cause we didn’t play … we didn’t go to things, or if we did go to things it was always such a big deal … it was a lot of

work to load up and unload … it’s not as carefree.”

 Abigail’s parent

 This is a common problem and something, which Team Ethos purposely tries to tackle. On the site, you can helpful guides about swimming, going outdoors and travelling. We’ll be continuously adding to it in the coming months but if there is something specific that you want us to do, drop a note in the forums.

 

  1. Call Things What They Are

In the study, parents reported that it was important to put as many labels on a child as they needed. Labels many pointed out were important for gaining access to services and funding.

“Put as many labels on her as she needs … because without the labels, you

don’t have access to all that. And that opened up everything for her. She

got all the equipment she needed, we got her into the social group that she loves…” 

Greta’s parent

 

I totally agree with this point. From both the parent and child’s POV, you can fail into the trap of not using the terminology because words like spastic for example have been used in negative ways. However, there is a world of difference between spastic CP and Ataxic for example, both in terms of treatment and symptoms. Don’t be afraid to use the right words in the right way.

  

  1. Empower Children To Learn About Their Condition

Members of the study also reported that they felt it was important for children to learn about their conditions as they matured.

“Just in researching their own disability, they realize there’s so many people like them. And yes, maybe they can’t do this, but they can do this … it just gave her, sort of, an understanding that she was a person with a disability. She wasn’t a bad person; she was a person with a disability.” 

Irene’s parent

 Again drawing on my own experience, I was always remembering the impact that going to the CP Sport training days had on me. It was so great meet so many people like me, who shared many of the same problems. But perhaps more importantly, I saw many adults with CP and got to know how they did certain things. I just learnt a lot about how to live with my condition.

That is why when we were creating EthosDisability.com; I was so keen to include user profiles. Being able to see people who have similar needs to you and how they deal with them is just so important.

You can read the CanChild resource here: http://motorgrowth.canchild.ca/en/Research/resources/ASQMEmajor_advicefinaltipsheetjan112010final.pdf

 

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