I never ever ask my daughter what she wants for dinner.

I haven’t asked her for years now. I don’t make a family meal and expect her to eat it, nor to I even expect her to eat with us as a family. 

All of that causes her too much stress. 

For years I was doing mealtimes all wrong and I didn’t even know it! 

My daughter refused whatever I made, she was losing weight fast, lethargic, pale and very anxious.

Other parents told me ‘She’ll eat when she’s hungry!’.

She never did. Doctors told me ‘She’s just a fussy child. She’ll grow out of it!’ She never did.

Mental health nurses told me ‘You can’t let her control you!’ She still didn’t eat anything.

A dietician prescribed build up shakes. She wouldn’t drink those either. 

Every single mealtime was so stressful we all ended up in tears. 

But all that has changed because now I make the same meal every night and allow her to eat it in front of a screen.

Finally she’s eating, putting on weight, less anxious and thriving in school. 

So few understand extreme food anxiety and refusal.

So many professionals still don’t believe in or understand ARFID (avoidance, restrictive food intake disorder) and many schools don’t accommodate children like my daughter either. 

As a society we are programmed to believe that a healthy diet has to consist of a large variety of different foods, fruits and vegetables are vital, and meals should be eaten as a family without screens.

While that might be the right thing for some it’s not right for my child. 

For my child the same meal every night is what is safe. It’s consistent. It’s predicable and doesn’t cause sensory issues.

It always tastes the same. It looks and smells familiar and there no pressure to be social and eat at the same time. 

By giving her what I know she will eat I am respecting her, understanding her, listening to her and getting her to trust me.

In turn that is what has enabled her, over time, to try new foods and slowly, very slowly, broaden her diet. 

Now at 12 she eats around 10 different foods. A few years ago that was just 4. 

And that progress, however small, is because every single night she has the same meal. 

People can and will judge but they are not living and raising my child.

I need to do what is right for her and you need to do what is right for your child too. 

To all those making the same meal every night for your child: you are doing great!

Don’t allow the judgement of others to get to you.

If your child is eating then you are doing the right thing. Never ever forget that. 

As the COVID-19 lockdown restrictions eased further from Monday 17^th May (in England), one of the most looked for announcements has finally been made – hugging will be allowed!

The Government has said that “People in England will be allowed to hug loved ones and enjoy indoor hospitality from next Monday”, whilst urging people to “exercise caution and common sense”.

For many, this is great news, the therapeutic and mental health benefits of hugging loved ones has been badly missed, but as the nation rushes to get hugging again, it is worth a reminder that for some people hugging and close physical contact is not always welcome.

There will be many sectors of our community that might find hugs difficult, including children and young people who have experienced physical or sexual abuse for example, but here we will focus our thoughts particularly on children and young people with additional needs.

Within this group, which represents one in five children and young people across the country, there are many who for a range of reasons may not join the hug stampede and should be respected and understood for not doing so. Here are a few examples:

Sensory sensitivity
A wide range of additional needs have a sensory aspect to them, with children and young people being either ‘hyposensitive’ (an under-responsive sensitivity to stimulation) or ‘hypersensitive’ (an over-responsive sensitivity to stimulation; it is also possible to be both.

Children and young people who are hypersensitive can be quickly overwhelmed by sensory stimulus such as loud noise, bright lights, strong smells, and this can include physical contact.

For some children and young people with a sensory sensitivity to touch, even the lightest of hugs might be painful and overwhelming, causing them to possibly be highly reactive and very upset.

Social sensitivity

Again, some additional needs, differences or diversities can include a social sensitivity aspect.

This can include how easily a child or young person can identify, perceive and understand social cues and contexts, but can also influence a child or young person’s sensitivity to social situations where they might struggle to understand the feelings and needs of others.

Many children and young people might find a busy, crowded room difficult to cope with, for example, due to a combination of sensory sensitivity and difficulties with social interaction, but also because close proximity to other people can make it harder to manage and regulate their own feelings leading to them feeling overwhelmed.

A child or young person may also be resistant to being hugged by a loved one, especially if they haven’t seen them for a while, which can be upsetting for e.g. a grandparent who has been longing to hug their grandchild for over a year.

Physical disability or chronic illness

A wide range of physical disabilities or chronic health conditions can result in a child or young person being easily hurt by physical contact.

Their bodies may be weakened by their disability, or they might have very sensitive nervous systems or a low pain threshold.

In the case of some conditions, this can vary considerably from day to day. In such situations, even a gentle hug might be not just painful but potentially dangerous as well.

The ABC of hugging!
So how do family members, friends etc. who perhaps haven’t seen their young relative or friend for ages, let alone hugged them, know what to do? Here’s three ABC ‘hugging tips’ to help:

1. Ask

Never just hug someone, ask them if it’s OK and would be welcomed first. If they say they would rather not, don’t be offended, it’s likely to be for a very good reason! Don’t look offended and make them feel guilty, this isn’t about you, it’s about their health and wellbeing.

• Be gentle
  
  If a hug is permitted, don’t go ‘full bear-hug’ straight off. Be gentle, be appropriate, be quick. You are communicating love for someone, not trying to crush them for 60 seconds. A gentle hug for a few seconds should be fine.
  
  
• Check

Make sure they are OK, and if not then stop.

By asking you are helping them to communicate if they are finding it difficult for any reason and to remain in control.

When we hug our bodies release feel good hormones. These hormones include oxytocin, dopamine, and serotonin.

Once these hormones are released into our bodies we can experience feelings of happiness, relaxation, improved mood, and lower levels of depression.

But as hugging is permitted again after so long, let’s not lose sight of the difficulties that some people can experience with hugs, or of our responsibility to hug (or not) well.

To hug, or not to hug, that is the question! (with apologies to the bard)

Peace,

Mark

Often, as parent carers, our lives are full.

Being a therapist, social worker and advocate for our child as well as continual worries about the future can take up an inordinate amount of time and headspace.

Never mind already being a parent, looking after siblings, working and trying to keep on top of the household chores.

There isn’t much spare bandwidth for dealing with other things that pop up along the way. 

Furthermore, during the pandemic parent carers have found their (already limited) support disappear. 

Additional requests from schools, Parent Teacher Associations and social networks can sometimes feel overwhelming.

The expectation to provide a costume for a school play or world book day, attend meetings or remember to reply to messages and WhatsApp texts can be the straw that breaks the camel’s back.

Although I started writing my book Day by Day: Emotional Wellbeing in Parents of Disabled Children before the pandemic, its resonance and key messages remain the same.

In fact, the need to look after yourself is even more important than ever.

Part of this may entail saying ‘no’.

No to attempts to shoehorn our child into a world that wasn’t designed for them.

No to those who don’t understand our life and make unrealistic demands.

No to unimportant things that take up our time.

No to inner voices that tell us taking time for ourselves is selfish.

As someone commented on my Instagram feed recently:

‘No’ is a complete sentence.

It can be powerful and, at times, necessary. By using the word it may help us create the spare capacity we need, but rarely allow ourselves. 

I share many other tips from parent carers on looking after your emotional wellbeing in my book which was out on 7th May (link in my bio). 

Every Monday after Isla’s Art Therapy session she rushes out of class to show me what she has created.

It may be a kite with some string, a card to her teacher or a painted rock.

They are treasured pieces take place on her top shelf in her wardrobe but then are quickly forgotten about and never referred to again.

None of the work she creates is that artistic in the traditional sense but it is the process behind it that is most important.

It is all about discovery and curiosity.

It may be exploring an idea and creating it through the various art materials. Or exploring the materials. For example using paint and working it in different ways to create stories and patterns.

Isla will often collect items from home and take them for her to use at art. She may take an egg carton, discarded shoe boxes or save some  could be art material before it goes into the recycling.

She really enjoys the hands on work, creating pieces to bring home.

However, Art Therapy isn’t just about expressing herself through her art

It also provides a safe environment for Isla to practice social skills.

Having highly trained therapists to guide her and like minded class mates to share with she is in the best place to succeed.

From what the therapists tell me she is learning how to connect with her class participants and work alongside them. 

She has opportunities to practice managing her emotions whether it’s happiness or frustration.

She learns how to start conversations and show newcomers to the group the way to participate.

Isla has been attending Art Therapy for many years and it is definitely a highlight of her week.

I have never sat in on a session. I don’t know exactly what goes on in that room but I do know a lot of magic happens with her wonderful therapists and class mates.

I have tried to recreate this at home collecting various art materials but I cannot get Isla to engage.

I have come to the realisation that Art Therapy is so much more than making art and is something we can not replicate.

When asking Isla what she likes about art.

She says  “It is fun and I can see my friends. I can do anything that I like and I don’t get told off”. What more could a girl ask for!

It’s hard to believe I now have over 10 years of special needs parenting under my belt…

The growing-up hormones, moods, meltdowns was something I wasn’t anticipating in my youngest daughter at just 10 years old! She has three older sisters aged 12, 14 and 16 so we’ve been through the tween and teenage years and changes with them too.

Brielle is different though.

She was born very prematurely at 25 weeks gestation and seems to want to do EVERYTHING early!

I noticed signs of hormonal changes and puberty with her when she was 8. She’s now 10 and the hormones seem to be really messing with her.

We are dealing with daily meltdowns and behavioral issues at school. And before now she was always such a happy, content wee girl.

I am absolutely DREADING her getting her period.

She is still needing regular prompting and toileting daily and wears cotton absorbent trainer pants in case of accidents, so I’m not sure what the best product for home and school will be when she starts to menstruate- which probably won’t be too long coming now.

My head is screaming “but she’s only 10!!!” She’s still my baby girl and I know it’s silly but sometimes I secretly wish she could just stay little for awhile longer!

Although it’s amazing to see her thrive and grow, her legs stretch longer, it’s hard letting go of her little-girl physique and seeing her grow-up.

It’s also harder on us as she gets bigger and stronger as she’s wanting lifted all the time and is getting much heavier so takes a toll on our backs.

She has cerebral palsy and cannot walk unaided though she can walk hand-held and mobilises independently by bum-stuffling.

But she is still a cuddler and jumps up on us to be carried a lot which we try to dissuade.

Also when she lies down in a meltdown she is very hard to get up if she doesn’t want to- this can be in a shop or sometimes on the pavement so is an issue with manual handling (for us as parents as well as for staff at her school).

It’s SO so hard to know with a child who is non-verbal knowing how much of her moods and behaviors are hormonal-based annoyance, if she’s in teething pain (her teeth are a bit of a mess), if it’s general communication-frustration at not being able to express what she’s feeling or she wants, or if she is displaying qualities consistent with the autistic spectrum (this is needing further assessment).

All we can do is love her to bits, and support her every minute to ensure we provide the best opportunities and environment for her happiness.

She is absolutely well-looked after and spoilt rotten by her 3 older sisters especially and really thrives on all the attention she gets as the “baby” of the family

Throughout the childhood and adolescence of any child there are many different kinds of milestones, transitions and rites of passage, many changes that come along, but for families of children with special needs these can provide many opportunities for unhealthy comparison and a realisation of difference, which can sometimes be so difficult and painful.

Milestones might include developmental ones like learning to crawl, stand and walk; developing speech and communication; learning to ride a scooter or a bike.

Transitions include big changes like starting nursery, then school; changing classes, schools, or moving from a mainstream school to a special school; maybe moving into higher education which might mean leaving home; moving into supported living as a young adult.

Rites of passage can be many and various but can include faith based events to welcome a child into the community, or to recognise their faith; school based events such as the school prom, important exams, or graduation; life events such as a first boy/girl friend or going away on holiday without parents for the first time.

Many of these milestones, transitions and rites of passage can be fraught for all families, but for families of children with special needs they can also be a time of significant worry and often sadness, as our child is once again shown to be different to what society understands as ‘normal’.

We can make unhealthy comparisons and get thrown back into that cycle of grief that so many families can experience.

My own son, James, was 18 last summer and because of his various special/additional needs the path of a ‘typical’ 18-year-old was never going to be one that James would take.

I have long since understood this, and love James for who he is, but when in August there was news coverage of 18-year-olds celebrating their A-Level results, jumping excitedly in the air and looking forward to heading to University, I realised that in a different world that might have been James, and it caught me for a moment.

Did James mind that he didn’t have A-Levels? No, he has no concept of them.

It was me that was affected, me that temporarily felt a profound sense of loss, before I realised what unhealthy comparison was once again doing to me and chose to stop.

A few moments later James’ laughter filled the room as something delighted him and the cloud was lifted.

I don’t need to make comparisons, I can celebrate with James for who he is, all that he brings to us, all that we have learned by James being a part of our family, all that is different and better about us because of James.

He doesn’t need a bit of paper to earn our love, he has it unconditionally.

He has his own personal milestones, transitions and rites of passage on his own life journey, and we’re right there alongside him, helping him through them or celebrating them with him whenever and however they come along.

So when that TV advert comes on and the opera singer uses the catchphrase “Go Compare!”, I look at James, smile, and think to myself why would I, he’s just right as he is!

I hope you can do the same for your child too.

I have had over 12 years of professionals involved with my children.

I’ve been criticised from everything from child lead feeding to not enough tummy time, to fighting for special needs schooling to having too many toys in my living room, but the one that consistently crops up time and time again is the way I discipline my son. 

I didn’t set out to be controversial, I rarely raise my voice and there isn’t ever physical punishment.

So what do I do that causes so many professionals (and much of the general public)  to feel I am wrong in how I raise my non speaking autistic son?

Well many would say he controls me, some argue he controls the full household, and it appears to many that he always gets his own way. 

I do parent differently but that’s because I have a different child to everyone else. 

Firstly his behaviour is communication:

When he refuses to go into a certain shop and I acknowledge that by not taking him in I am respecting the fact he is communicating to me that for whatever reason going there is too much for him.

Maybe it’s too bright, or too dark, too loud, too busy, it smells unusual or it’s too cold.

Making him go in might seem on the surface to others I am teaching him obedience and that he can’t always get his own way but actually it’s teaching him that his feelings and communication don’t matter and that consent is meaningless.

As a vulnerable child who will at some point have others look after him without me there I need him to know that if he is uncomfortable and he communicates that someone will listen. That starts with me listening as his mum.

Secondly his need for control is anxiety driven:

When you don’t understand everything that happens around you and to you you can feel disorientated and frustrated.

Feeling out of control breeds anxiety in us all and my child is no different.

Routine is everything to him and allowing him to have a bath when he’s ready (even if that’s 1:30 in the afternoon) or wear what he wants isn’t about having him control me but about lessening his anxiety so that he is calm, settled and happy.

Giving him choices makes him feel respected and included and means he eats better, feels better and in turn the entire family are more at peace.

Thirdly I am meeting his needs not wants:

I don’t have a child who throws a temper in a toy shop because I won’t buy him a certain toy but he will scream if I happen to walk past a shop with a lift and he doesn’t get to see it.

The difference is that lifts are in fact meeting a huge sensory need that has to be fulfilled.

It’s like someone who has to run daily or a dog who requires a daily walk.

No-one would say walking a dog everyday was spoiling it and likewise meeting my son’s sensory needs is not spoiling him but meeting a very high need he has in order to stay healthy and happy.

For me that means allowing him to be noisy (he can’t speak but he can sure make noise!), allowing him to move about lots and letting him line toys on his bed every night.

It means many lifts visits, walking daily and a bath every single night. 

My child doesn’t act like a 12 year old because developmentally he isn’t 12 in any way. I need to parent him according to his needs and understanding and in a way that works for our family. 

It’s easy to be judgemental of other’s parenting. It’s especially easy to see a parent ‘give in’ to a child who is crying or screaming and assume they are a weak parent.

It’s too easy to tut and think, ‘I would never do that!’ 

But every child is different and there is always much more than meets the eye. 

Maybe the child has a hidden disability, maybe they are neurodiverse or developmentally delayed.

Maybe the parent is actually respecting their child’s communication, meeting their sensory need, or trying to calm an anxious child.

Either way parents like me get more than enough judgement and misunderstanding from professionals as it is and we don’t need any more judgement from anyone else.

When you have a child who is different it means you need to parent differently too. 

Parent shaming is nothing new.

I’ve been experiencing it on and offline since I became a mom almost seventeen years ago.

Somehow I was naïve enough to think the special needs community was immune to this type of behavior, but I was proven wrong within the first year of my daughter being born.

Not only do we get unsolicited advice and criticism from family, friends, and strangers- it can also come from within our own circles of special needs families, and it includes anything from passive-aggressive insults to straight-up rude comments.

Some of the arguments are the same ones that have been going on for years: cloth diapers or disposable; organic vs. nonorganic: bottle vs. breastfeeding…but many are specific to parenting children with special needs, and everything from sleep issues to tube feeding seems to be fair game.

My 14-year-old daughter has a feeding tube, and my 10-year-old son had one until he was almost three.

I’ve had people criticize the choice of supplemental nutrition my daughter receives and shame me for not doing a blended whole food diet.

We’ve tried the blended whole food diet, and it made her reflux even worse.

Behaviors are another thing that parents of children with special needs often get judged and criticized over. When people see a child having a meltdown, I’ve heard comments like:

Maybe if you fed them the XYZ diet

Perhaps if they didn’t have so much screen time

Maybe they shouldn’t take them out if they’re going to act like that.

And people wonder why parents of special needs kids tend to isolate.

It’s bad enough that we have to hear this stuff from random people, but it really cuts to the core when it’s from one of our own.

Most children with special needs receive some type of therapy, whether it be speech, occupational, physical, or behavioral therapy.

Behavioral therapy has always been a contentious issue.

People seem to either love ABA therapy or hate it and label it as abuse. Full disclaimer- my daughter has been through ABA therapy, and while it didn’t help her as much as I’ve heard about it helping others, it wasn’t a terrible experience for us.

But we’re only one case, and everyone is different, so if someone tells me they had an awful experience, I’ll believe them because, like all therapies- it’s not for everyone.

There are also assumptions made that if you’re not spending thousands of dollars on private therapies, then you’re not doing right by your child.

If someone can afford to spend that kind of money- more power to them.

My son’s respiratory issues (he has chronic lung disease) have also come under fire.

Maybe if you didn’t keep vaccinating him (no, I’m not joking- this was actually said to me online)

Maybe if you had breastfed or pumped longer

Perhaps if he weren’t on so many medications

The problem with these criticisms and judgment within the special needs community is that it creates a toxic environment among families that need more support than most.

Our lives are challenging enough without being afraid of judgment from people in our own circles.

In the world of special needs parenting, I’ve come to realize that there is no “right way or wrong way” when it comes to many aspects of our life.

When you feel the need to criticize someone on their parenting choice, try to remember that that person may be in survival mode and just trying to make it through another day.

It’s been a while…

I have just opened up my blogging word document to find that it was exactly a year ago that I last typed up any thoughts.

It was about no other than the beginning of the pandemic, around the fears of the unknown, and realising once again how vulnerable my son is.

Anyway, I’ve left that there, as we speak and hear enough about what’s happening, so I wanted to bring something a little different, well I’ll try, as everything in life seems to be associated with or because of the pandemic.

Zachariah returned to school yesterday and I am feeling a little lost, but also feeling re energised, I don’t know about you, but the sunny weather, whether it be cold or hot, instantly gives me a 10% booster, and creates a new perspective on particular aspects of my life at that moment in time.

I believe the 1st of the month has a lot to do with it also, as it’s a new beginning, a fresh start…add the factor of it being April in there also, and we feel that spring vibe, and the prospect of new life! 

But before we spring into spring, let’s just look at the journey getting here…

Life had become a little mundane in some ways, the same get up routine, the same logging onto virtual school, the same feed, nappy, sleep, play routine, the same evening routine, and the occasional walk (the same route I must add).

Zachariah needed school again, and I needed time to find myself.

I say this as I roll my eyes, as the number of times I have said this is unreal, I never quite manage to find myself when I’m not with Zachariah 24 hours a day.

Since he was born, I have dedicated my whole world to him, like many mothers do.

Tim continued to work full time, whilst I did bits in between, with my main role being Zachariah’s no1, but no real career or passion.

Yes, I absolutely love my little business, and yes, I have loved the projects I have done over the past few years, but nothing has ever been big enough to fill the whole gap, or fill a long enough period of time.

Events have either got in the way, Zachariah has needed me more, or my mental health has created a huge barrier preventing me from pushing that little bit further with something.

It’s almost like since giving birth to Zachariah, there has been a fog in my brain, a blur that has held parts of me back.

I can be my own enemy in this too. I feel guilt.

I feel less confident these days too, I have definitely lost myself in many ways over the years. 

I almost hide behind my son. And this is exactly what I have been doing over the past year.

We were told to shield at the beginning, and I have taken this to a whole new level, where I have almost put myself on a shelf, becoming just an attachment to my son.

I have dedicated my whole time to being his no.1, even though we’ve had carers some of the time, and he did a few months of school before Christmas.

I just could not pull away from the Mum role.

I keep asking myself why I do this, why for almost 7 years, I have not been able to break free and accomplish something for ME.

I know deep down that bigger thing are achievable, caring for a young boy with complex needs or not.

We have everything set up now. We have the adaptations, the carers, the school.

Why oh why am I unable to fully find myself again.

I get to points where I feel I have, but then I get overwhelmed, crash and burn out, and this state is really difficult to get out of.

I have to start again from scratch, which leads me on to now…

I feel this month is the month to really work on this, like April is the new January, and really pull out who Rochelle is and who Rochelle wants to be.

It’s time to stop hiding behind my son, who no longer needs me every single minute of the day. 

What is the plan I hear you ask?

Well like I said earlier, I am very easily overwhelmed, it is no secret, therefore I need to take it slow and simple. 

I started with a spring clean of the house yesterday, and today I have started writing again, as this is what helps my mental health, getting everything out on the page, in a chaotic, but meaningful way.

I am well aware that I am not the best writer, but there is a sense of freedom in writing, so I try not to edit or over think.

I feel this is a great, comfortable step, as it will help me brainstorm, and also filter my thoughts.

I have also started to reach out to a few friends I have disconnected from to arrange walking dates in the local park, and cut down on the social media.

This step was a big one, as I feel I have been very active with posting and engaging on social media, but not so much personal conversation going on, so there’s layers of me that have been blocked out so to speak.

It’s so easy to be present behind a screen, not so easy in body.

April is looking exciting, and I am feeling like I can achieve it, as I haven’t set myself some silly out of reach goals, which I feel is the key point of my blog today.

Much love,

Rochelle