The Secret Epidemic Affecting Special Needs Parents

It is so common for me to hear this.

It is the centre piece of every support group, the most common theme on online special needs parent forums, the single most heard words when I meet up with people.

For some of those parents, it is so bad that I encourage them to see a doctor for support.

In my years as a fellow special needs parent I have found there is a secret epidemic affecting so many special needs parents and it needs talked about:

We need to talk about depression.

Depression in the special needs mum or dad is so understandable but too often goes unnoticed.

People see a mum crying and think she is having a bad day.

What they don’t know about is all the other nights she cried in private and no-one knew.

My eyes are more tuned to see people struggling since I have walked that path.

I know what it is like to look at my child and worry for his future.

I know what it is like to feel there is no hope.

I recognise that feeling of failure when you realise your child is just not developing as they should.

I know the pain of taking your child to hospital when they should be outside playing with friends.

It is isolating when your child is disabled or has special needs and it is ok to admit that.

Society sadly expects us to be positive, upbeat and encouraging and often I see parents who are so emotionally overwhelmed, so sleep deprived, so beaten down by the system, that they have so little hope.

When you have a child who struggles in school every day, a child who won’t eat, or has no friends, or is being bullied for being different, or who cannot play in a park as the equipment is unsuitable for their needs how would you feel?

If your child was denied the support they need, or could not communicate, or is living in pain every day…

Would you not be heartbroken?

Is it any wonder there is an epidemic of depression among parents of children with additional needs?

While so many are on medication, and this is vital, we also as a society need to recognise that special needs parenting is exhausting and draining.

Medication is wonderful but what about better support and understanding for our children, better care for those in society who are full time carers, training for staff so they can better meet the needs of the most vulnerable, and a society less prone to judge and quicker to encourage?

The current epidemic of depression among special needs families is concerning, but what worries me more is that continual budget cuts and ignorance in society is breeding not only depression among the parents but sadly I am now seeing siblings, and even special needs children themselves, struggling with the same issues.

We need to recognise this epidemic and do something about it now!

Don’t ever be afraid to tell someone you a really struggling.

Don’t ever be afraid to ask for help.

Together we can support each other and help make a better future for us and our children.

Feeding Your Child, “Real”, Food On a Pureed Diet

When your little one has multiple disabilities and lacks the ability to chew, seriously unique challenges are posed.

In fact, before we found our Ninja Blending System, mealtimes were completely stress-filled and would send me into a tailspin.

LUMPS…they were the dreaded culprit that almost always led to vomiting; thus ruining her entire eating experience. Food aversions always followed and we’d have to mark off another food that our daughter would not tolerate.

“What is she going to eat?” “How can she survive on only yogurt and applesauce?” and “How will she ever gain weight?” were questions I would beat myself up with on a daily basis.

Sure, store bought baby food was an option, but while convenient, it severely lacked taste, excitement and most importantly, calories.

They were virtually just bland vegetables and water.

Healthy, yes. Substantial enough for a five year old, no. We have always supplemented her diet with Pediasure, but we wanted her to take in plenty of REAL food as well.

When a child has growth restrictions, and an inability to chew, you really have to get creative.

Thanks to our awesome Ninja, I am able to transform everything from homemade lasagna to roast beef and potatoes into a lump-free meal that my daughter can enjoy.

Pasta with chicken and asparagus blend well with some water and a little olive oil for added calories.

Chicken and rice with mushrooms become a perfectly blended puree with the right amount of heavy cream added.

She LOVES to eat, and it brings me great joy providing healthy, calorie packed meals for her…her way.

We have a letter from her pediatrician on file at her school, requesting that the cafeteria puree her meals. Sometimes, they get it right, and she is able to eat what her classmates are having for lunch.

Other times, to save her from having to endure a pureed hotdog (yuck!), I will prepare her lunch for school. Sweet potatoes with chicken, heavy cream, cinnamon and a dash of vanilla is one of her favorites.

Low muscle tone and poor coordination may have delayed her chewing ability, or possibly even permanently prevented it.

However, I don’t let that stand in her way.

I am grateful that she has the opportunity to relish wonderful things like spaghetti and meatballs. I even sneakily hide squash and carrots in the sauce for extra nutritional punch, as the mother of a typical toddler would.

My daughter is a very special little girl, with a vast array of very special needs. Food is an area that we can easily work around.

It does my heart good seeing her enjoy real food, even though she is on a pureed diet.

Taking time for Me!

You know, like reading a book leisurely, doing my favourite hobbies, taking a swim (without the kids!), going to the hairdressers or beauty salon, or even going out with my husband.

I’m not saying this in some ‘look at me, I’m so selfless’ kind of way.

I’m saying it truthfully, somewhat regretfully.

I KNOW that I need to do more things for ‘me’ but life kind of gets in the way. The busy, day-in, day-out, there-are-only-so-many-hours-in-the-day balancing act that we all do.

Not only is life with kids busy, once you add a child with complex needs you take it up another notch…

I am a carer. I nurture and care for my four beautiful girls, I look after my husband and our household, and my background is nursing (which essentially is a ‘caring profession’).

I do LOVE CARING. I wouldn’t want to do anything else.

But caring can be exhausting.

So recently when I was feeling a little overwhelmed and stressed, I had a long introspective look at myself. I asked myself “how can I be a good mum, a good wife, a good nurse, if I don’t take care of myself first?”

I am finding my way at purposefully taking time for ME. With my girls at school now a good chunk of the morning and afternoon, I have a lot more time on my hands and am determined to do all those things for myself that I’ve been putting off for years. Just doing things I enjoy and that will make me emotionally and mentally happier and healthier.

I’m also juggling a back to practice course and hoping to find a part-time nursing job that will get me out of the house and mingling with people, doing something I love. I’m doing this for ME.

It’s SO important to take time for yourself! We all desperately NEED time to de-stress and do things for ourselves that bring joy, relaxation and fulfilment.

My top suggestions for, ‘ME’, time:

– have a SPA day, or mani/pedicure

– get a massage

– trip to the hairdressers

– spend an hour reading a book in peace

– spend time doing your favourite hobby

– go on a shopping trip (for new clothes, make-up etc. NO kid/food items!)

– go for a walk somewhere beautiful to think and destress (and grab a coffee!)

Not only will we feel better, but we will be better equipped to look after our children and families

Exercise – Vital for the Child with Autism, and his Mom

Picture the scene: a frazzled mother with her head in her hands, and a child desperate to focus, while trying to sit still long enough to learn to multiply fractions.

The mother sees laundry piling up around her, dishes in the sink, and feels her patience fading as she tries to help the child remain on task.

The child is frustrated; feeling misunderstood.

It’s not his fault that he has oodles of excess energy to burn. The mother is tired and feels like she is drowning as the day is growing shorter, and there are numerous lessons remaining to finish.

This scenario is a typical homeschool day at our house.

Or, at least it has been until we discovered a magical component that had been missing from our routine. EXERCISE!!

Mothers of children with special needs experience stress that can be compared to PTSD.

When you have two children with special needs (one with multiple disabilities), some days the stress is absolutely crushing.

It’s hard to breathe.

“How will we make it through the day?”

“How will we accomplish all the tasks before us today?”

For the longest time, I simply loaded myself up with strong coffee and started each day with a less than positive attitude, complaining when things didn’t go as planned.

We possess a gym membership, but for a long time, it had gone unused. “Who has time for that?” was always my excuse.

When my mother decided to start working out and to put her health first, we thought it would be a good idea to join her, in support.

Soon I realized that spending time with my dear mother, chatting as we burned calories on the elliptical machine, was promoting a sense of well-being in my life that I greatly needed.

While we worked out, my son ran on a treadmill and rode a stationary bicycle next to us.

He loved being active and felt a sense of calmness as the endorphins started kicking in.

Quickly we realized that when we started our day with exercise, it set a positive tone.

We finished school work faster, and with phenomenally better attitudes.

The energy breaks needed throughout the day were lessened.

I even had the energy and the mindset to get my work around the house knocked out.

We were HAPPIER!!

On some days, my son and I skip the gym and we go for therapeutic walks outside. We discuss his favorite topic, video games, as we walk.

This allows us to begin our day without stress and with our minds fully relaxed.

Why didn’t we try this sooner? I’m overjoyed that we spend much less time arguing over schedules and school assignments now.

I don’t feel like I’m drowning anymore. Life will never be easy, but we’ve found our way to better mental and physical health.

When you have those two key elements on your side, the challenges you face become easier to tackle.

Special Needs Parents: How Crossfit is Changing My Life!

It was a cold September Saturday in 2013 and I was working at an outdoor event when I bent to lift a crate of bottled water.

I immediately felt a stab of pain travel from my lower back down my right leg.

I knew this wasn’t good!

I struggled through the rest of the day in a haze of pain relief and by the time I got home, needed help to get out of the car my back had seized up so much.

What happened that day was a result of 5 years of moving and handling Daniel incorrectly.

I was strong and fit – regularly running 10km and half marathons but I ignored the niggles of pain.

Lifting him was no problem to me.

Or so I told myself.

He’s an average boy in terms of weight and height but with low tone and no ability to assist whoever is moving him, his dead weight feels significantly heavier than his actual weight.

The weeks and months that followed gave me a scare.

‘Suspected torn discs on L5 & L6.’

‘Complete rest.’

‘No lifting.’

The stuff of nightmares for a special needs parent.

How were we going to cope?

Did this mean I’d not be able to manage Daniel by myself?

Our home at this stage wasn’t adapted nor did we have a wheelchair accessible vehicle.

With minimal weight bearing, Daniel needs significant help with every aspect of movement and all his transitions.

Another comment also filled me with dread.

‘Your running days are over.’

Running was my thing, don’t get me wrong I wasn’t any good at it. But it was my stress relief, my down time, my hobby. And the thought of never doing it again, well…it was hard to take.

While I waited for an MRI scan, I began looking at other ways of healing/strengthening my back and finding a new hobby.

So I tried – Yoga, Pilates, Personal Trainer, Gym Classes, I even got a Cross Trainer (it became a clothes horse).

Nothing clicked with me.

This period of time did give me an opportunity to rest though.

I concentrated on minimising the amount I lifted Daniel.

I really focussed on lifting him correctly when I had to, our home was adapted, we moved him downstairs and we took delivery of a shiny new wheelchair accessible car or the bingo bus as it’s affectionately called.

I found the spasms of pain were reducing, I could cut back on the painkillers, my movement was freeing up and I felt ready to start running again.

New trainers, a date in the diary for a half marathon and my first run – January 2016.

It didn’t go well. 3 miles in and I admitted defeat. I sat on the side of the road, phoned my husband and in tears asked him to come and pick me up. Think Paula Radcliffe in the Beijing Olympics, it was that dramatic. Well for me anyway!

‘Why don’t you try Crossfit?’, he suggested in the car on the way home.

He’d recently taken up Crossfit and I’d watched the YouTube videos with him, WODs, Double Unders, AMRAPS, Metcons. It was like whole new language and it looked ridiculously hard.

‘Don’t be daft, I’d never be able to do it – not with my back.’

After months hearing all about how amazing Crossfit was, watching him go from strength to strength. I decided to give it a go.

It was with much trepidation that I went along to Crossfit MCI for my first fast track session.

It many ways it was exactly what I expected.

It was scary. It was like no other form of exercise I have ever done. It was like learning a new language.

But it’s what I didn’t expect that’s been the most surprising.

And that’s how quickly Crossfit has improved my strength, most importantly for me, my core strength and also how it’s improved my movement.

Crossfit Coach Matt McLoughlin explains, ‘Crossfit is based on functional movements – the core movements of life. These movements reflect the best aspects of gymnastics, weightlifting, running, rowing and more. We vary these functional movements constantly and perform them at high intensity.

Crossfit programming is scaled and suitable for all ages and physical conditions. We never change the programme but rather scale the load and the intensity to suit the individual.

That’s exactly what we’ve done with Claire – we’ve worked on her mechanics and form. It’s great to hear that she’s already feeling the benefits in a short space of time.

The focus is very much on mechanics followed by consistency and then on intensity, The more work you do in less time, the more intense the effort, making it a perfect programme for anyone with a busy schedule who needs to make the most of their time.’

So three months in and although my focus is still very much on not doing it unless I have to, I’m finding that on the occasions where moving and handling Daniel is still necessary, it is easy and more manageable.

Another unexpected surprise is that Crossfit is about so much more than an exercise programme, like the world of special needs it’s a Community. It’s a community of like minded individuals supporting each other, encouraging each other and even competing against each other using a system of whiteboards and records creating a sense of camaraderie like no other.

I’m glad I took that first step into the Box (a Crossfit gym – told you it was a whole new language).

Not only am I a happier, healthier person. I’m also a fitter and stronger one.

Crossfit is helping prepare my mind and body to care for my little boy who I have to accept is not so little any more.

And is just going to get bigger.

Special Needs Vests

This month, we have focused on popper vests for older children.

Our panel is trialling a selection of popper vests, bodysuits and sleepsuits from Marks & Spencer, Wonsie and Rackety’s.

It is very common for babies and younger children still in nappies to wear popper vests.

However, when children with additional needs out grow the popper vests which are widely and cheaply available up to the age of 3 in most supermarkets and clothing stores, parents often struggle to source similar vests or bodysuits for older children.

There are many reasons why parents and carers prefer to continue to use the poppered vests rather than standard vests with their children still in nappies these can include comfort & warmth to hide nappies as well as to prevent stripping, nappy dipping, smearing and eating poo.

Annabel McMahon from Rackety’s commented, ‘These are very common problems but each parent who experiences them for the first time feels very isolated, they don’t realise how common the problem actually is.’

According Annabel, Rackety’s customers report three main reasons why their products are so invaluable:

1. Keeping warm, comfortable, dry, dignified, hiding nappies once children (and adults) are past the standard age for being dry.

2. Preventing hands in nappies, inappropriate behaviour in public, keeping a child from playing with their poo and smearing.

3. Tube access, this works both ways, the problem of allowing parents access to the tubes, especially in public, and the reverse problem of keeping the kids from pulling at the tubes or worse still tugging them out so they have to go back to hospital and have further surgery.

If you use any of these, which poppered vests, bodysuits and sleepsuits worked best?

Special Clothing for Special People

Manipulating buttons, zippers, and snaps can pose quite a problem for many individuals with special needs who would like to become more independent by being able to dress themselves.

Likewise, parents of children with disabilities and special needs who may never be capable of dressing themselves, often find trying to dress their children in clothing designed for the non-disabled to be difficult and cumbersome

Those with sensory processing disorders can find standard clothing irritating and uncomfortable.

Seams, certain fabrics, and tags can make traditional clothing a nightmare for people with sensory processing issues

For these individuals, adaptive clothing may prove to be very helpful!

Adaptive clothing is specialized clothing designed with the unique needs of individuals who may not have full range of motion, the ability to dress themselves, or who have sensitive sensory systems.

Modifications made to traditional clothing designs could include:

Replacing buttons and shoelaces with velcro

Placing closures on the back rather than the front of garments

Front closing bras

Side opening pants

Clothing made with special fabrics

Seamless socks

Tagless shirts

Weighted vests

Compression leggings

If you or someone you know could benefit from adaptive clothing and would like to purchase some specialized garments, here are a few tips to keep in mind while shopping:

If you are shopping for someone else, be sure you know what types of modifcations that person needs and wants, their size, and color preference.
Also, try to take that person along with you if possible, so they can pick out clothing that appeals to them.
Make sure the items you choose are similar to the popular styles you see people wearing today.
Be sure the article of clothing is sturdy and made to last, so look for high quality fabrics.
Look for soft fabrics

Below are a few resources for Adaptive Clothing:

For a list of special needs clothing resources please see this list on The Disability Information and Resources website.

For a list of special needs fashions for children, check out the list on the Children with Special Needs website

Adaptaware: Clothing for Care (UK)

Rackety’s: Clothing for children and adults with disabilities

Adaptive Clothing Showroom: Clothing for disabled adults and children

Tommy Hilfiger’s Runway of Dreams: Adaptive clothing for kids

Tummy Tunnels: Clothing for kids with feeding tubes

More resources for kids with feeding tubes

Silvert’s: Wheel chair clothing for men and women

Kozie Clothes: Adaptive medical and sensory clothing

EZ Sox and Undeez: Socks and underwear for sensory kids

Independence Day Clothing: Adaptive clothes for teens, tweens, and young adults

The Wonderful Benefits of Blending

From day 1 on tube feeding we knew we wanted to feed him a blended diet – real food, liquidised to go down his tube without blocking it.

However we had quite a battle initially persuading Sam’s clinical team to allow it.

Original guidelines stated only formula feed was suitable/acceptable for tube feeding – we argued, hard, that as his issues were not due to digestive malfunction, we should be allowed to give him the same food he’d had orally.

Despite initial resistance, the team soon came on board once they realised that we fully accepted the work involved.

We have never looked back!

In addition to the risk of blocking the tube, food safety is often cited as a reason why medical professionals are frequently reluctant to support a blended diet.

It’s more than just basic food hygiene, which as parents we already adhere to, but ensuring that feeds are cooked through thoroughly before being rapidly cooled and frozen within a very short time frame if they aren’t to be used immediately.

Once we signed various forms confirming that we accepted the risks (pretty much saying if the tube blocked or he became sick then it was our responsibility not the hospitals… fair enough), we were good to go.

Our dietician advised on a suitable blender to liquidise even the most tricky of foods – I give you the raspberry seed… perfectly sized by nature to block a PEG perfectly if not obliterated first – and off we went.

Although it is a lot more work than just making up a formula feed, the benefits of giving our boy real food are huge.

His reflux has improved, as has his digestive function (we reduced his Movicol from 4-6 sachets daily to 1-2).

We discovered certain foods worsened his seizures, so we just cut them out.

Despite the initial dire warnings about food hygiene and risk of infection, Sam has actually been healthier since starting blended feeds than he ever was on 100% formula… he just didn’t tolerate it.

And we haven’t had any feed-related blockages (just meds… gah!).

The food hygiene aspect can be quite intimidating initially but it really isn’t anything more than you would do anyway – making sure to store the food appropriately, hand washing and maintaining a clean kitchen all being the main areas to take care of.

We have a very supportive dietetics/gastro team so Sam’s meals are evaluated by his dietician periodically to ensure he’s getting the right stuff in the right amounts.

But for me the greatest benefit is seeing my child thriving, and being able to prepare his food like any mother.

It’s the little things like this that make such a difference to us special needs Mums.

After so much has been taken out of our hands it’s wonderful to be able to take back some of the tasks other parents take for granted.

More, “Me Time.”

After facing some health issues and surgery last year, I’ve tried to make a more conscious effort to put myself first once in a while.

I thought it would be fun to share a few of the things I’ve been doing lately to de-stress and relax.

Baths

A long soak in a hot bath is a classic way to unwind at the end of a long day. I’ve been trying to take the time to do this more frequently, and it’s amazing how a tub of hot water can soothe some of the day’s stress away.

Must haves for a relaxing bath include lavender bubble bath, candles, and dark chocolate.

Do yourself a favor and find this chocolate. It’s amazing.

Shop Alter Eco Chocolate Bar

This vanilla bean soy candle is in my house and nearly gone.

Shop vanilla bean soy candle

And this bubble bath has the greatest relaxing, calming scent.

Shop Dr Teal’s Lavendar Bubble Bath

Exercise

I have been taking a class at our local YMCA for a few months called BodyFlow. It includes a combination of yoga, tai chi, and pilates moves.

I am not the type of person who needs to take a five-mile run to feel as though my body got some exercise.

This class makes me feel composed and strengthened. Finding some type of physical exercise that makes you feel strong and de-stressed is key in keeping yourself healthy both physically and mentally.

If mama is stressed nobody is at their best. (That’s a saying, right?)

Fun with the children

Our daughter and I have been enjoying a mommy-and-me style yoga class the last four weeks.

It is geared toward 3-5 year-olds and has been a great way to share an activity I enjoy doing with our daughter. We go for half an hour on Wednesday mornings and just have fun.

I have learned, and am still learning, that having a child with special needs takes up a lot of time, and it can be difficult to prioritize time with your other children. My daughter needs to feel like her wants and needs are the most important thing sometimes too, so this class has been a great bonding experience and opportunity to have some time together.

Girls’ Night (recipe)

I am hosting a girls’ movie night this weekend, which is one thing I love to do. Having a few girlfriends over to enjoy drinks, snacks, and a chick flick is an enjoyable way to unwind at the end of the week.

A friend of mine shared this recipe with me, and I assured her it would be on the menu for movie night.

S’MORES NACHOS RECIPE Major yum, am I right?!