Let’s Talk About Our Mental Health…

Did you know about 25% of the UK population will experience some kind of mental health problem this year – it most likely to be a combination of anxiety or depression.

Statistics also tell us that more women than men are treated for a mental health problem each year.

Does this sound familiar? Yeah I bet it does.

I’d say our chances of falling into that 25% are a good bit higher than the average mum – wouldn’t you?

I want to talk about this because I don’t want you to make the same mistake I did.

Shortly after finding out that our much wanted first born son had special needs and would need life-long care, I began to experience mental health problems.

I know what they are now, at the time I didn’t have a clue what was happening to me.

I HAD to be the strong one, I had to answer everyone’s questions, reassure everyone that it would be OK, that we would cope – so outwardly I think I put on a pretty good front.

No one ever asked if I was OK, so I’m assuming I did a good job at pretending. Inside, I wasn’t doing just as well.

I felt like a horrendous weight was dragging me down, I was constantly fighting through a thick cloud of fog – even the simplest of tasks felt like I was climbing mountain.

I think I spent more time crying than not.

I stopped going out, I stopped seeing friends and I stopped doing the things I enjoyed.

But I absolutely did not need any help. Asking for help would be a sign of weakness, taking medication would be a sign that I was not coping, I was sure no one would want to listen to how I was feeling.

In hindsight, now I’m in a brighter and better place, I wish I could give my old self a good shake.

I recently hurt my back, I immediately went to my GP, started a course of anti-inflammatory medication and spent a small fortune on physiotherapy treatment.

However, when it came to my mental health why did I think seeking the same help would be a sign of weakness?

Please don’t make the same mistake I did.

I managed to climb out of a deep dark hole very slowly, but it took far longer than it should have.

How much time did I waste by not asking for help?

I’ll never know now, but what I do know is that if I should ever feel myself sinking into that place again, I will most definitely be asking for help.

Time to Talk is urging us all to Take 5. http://www.time-to-change.org.uk/timetotalkday

Take 5 with a friend to find out how they’re doing, watch and share their film or have a conversation online – these are all small things you can do to make a big difference. https://www.youtube.com/watch?v=T5EvbjiaCcw&feature=youtu.be

Why not introduce yourself in the Firefly Garden, you’ll find a supportive group of parents, therapists and carers. It could be the start of a better and brighter future for you too. http://community.fireflyfriends.com/community/viewthread/122/

Special Needs Parents, Grief and Depression

Parents of special needs children usually make their way through a journey of grief which may include the following feelings:

• denial • anxiety • fear • guilt • depression • anger.

Each person will experience grief in their own unique way. Each stage of your journey may not occur in exactly the same order as above.

Some stages may go away only to reappear when our child has a set back. There is no right or wrong way to experience grief.

Give yourself permission to talk about and express your grief in your own way.

Be sure to communicate to loved ones, friends, and family members that they need to give you the room and time to express your grief without passing judgment.

Quiet and compassionate support is what you need.

After passing through the grieving period many special needs parents might continue battling with an ongoing depression, because our lives are forever changed!

Most of our special need children will be dealing with lifelong conditions. It’s not like they have the flu, will take a pill, get better, and then life will go back to being all rainbows and unicorns again.

Setbacks may occur. Challenges may be frequent. Frustrations will run rampant.

Below are four ideas to help you through the special needs parent grief and depression cycle –

1. It is extremely important for parents and caregivers to make time for themselves!

I know from personal experience that this is easier said than done.

But sometimes just a few minutes locked in the bathroom while you read a page in a book or have a good cry is all you need to catch your breath and soldier on!

2. If your child is eligible for respite care please take advantage of it.

I know how hard it is to leave your special little someone with strangers even when they have been specially trained and finger printed for safety, but most states also have funds that can even be used to pay relatives and friends to watch your child so you can get away for an hour or two.

3. Participate in support groups. If you can’t get out to share with real life people that’s okay because there is plenty of online support available which is also very helpful.

Talking about our unique issues as special needs parents with others who get is essential for processing through to a healthy emotional life.

Firefly and Parent to Parent are both excellent emotional and informational online support resources!

4. Seek professional help, even if you think you are doing okay on your own or that your depression is not severe enough.

There is absolutely nothing wrong with consulting with a licensed mental health care professional.

In fact, there is everything right about it!

A professional can help you sort through and process your feelings and emotions and get you back on track to feeling better about coping with life as a special needs parent!

Some days you may feel nothing but despair and despondency, but I promise you that one day you will feel happy and hopeful again!

Although they may be different from what you had imagined, I also promise you that your child will someday experience triumphs, reach goals, meet milestones, achieve many awesome accomplishments and most importantly live happy, satisfying, and productive lives!

One day you will enjoy some rainbows and unicorns again!

Disclaimer: I am not a mental health professional or a doctor.

The above information is not to be mistaken as medical advice or medical treatment.

Please consult with a licensed medical doctor or mental health professional for treatment if you are suffering with depression.

Information for this post came in part from States of Grief for Parents of Children with Special Needs.

Out and About

However there are several places we love to go in the North East.

Where staff are friendly and accommodating, and they have adequate changing facilities. So I thought I’d share.

Seven Stories 

A story book haven.

With interactive exhibitions, story time and dress up in the attic, some sort of making activity downstairs, a bookshop and cafe, seven stories is a lovely place to visit.

It can get very busy though especially with only one lift.

We tend to go for opening time or much later on.

Lately, I’ve noticed “relaxed” events taking place for young people with LD or autism.

The Discovery Museum 

I’ll admit it, i love museums.

They are so much more interactive nowadays you get to touch stuff! 🙂

The bonus of visiting this museum is that there is a huge family toilet. Let’s all wee together! Complete with changing table. I actually squealed when I saw it.

The Alnwick Garden

I’m not sure that there is anything better in life than the Alnwick garden with family on a sunny day.

Super soakers, tree houses, activities for children, and an amazing garden to explore.

I felt disappointed that I couldn’t find anywhere to change Nate and had a bit of a disaster on the floor of our WAV.

I have since found out there is a large changing room with bed near the gift shop.

This will make everything much easier and less stressful when we visit this year.

A typical family day out might include a farm.

However I have to find one in the north east with some sort of changing table.

This means a short visit and crossed fingers.

We love the beach, especially the Northumberland coast, but I don’t know of anywhere that has a changing table.

I’d love it if anyone could point me in the direction of one especially around Seahouses or Bamburgh.

While the Centre for Life, the Great North Museum and Beamish Museum have disabled toilets and are fun to visit, a whole section of society will find visiting difficult without a long enough bench or table to change on.

We have holidayed at Center Parks Sherwood where there is a changing bench in the swimming pool changing, but no where else.

I did bring this up as an issue at the last stay.

Our last stay at Haggerston Castle involved a nightmare trying to get Nate changed for the pool as we couldn’t get the wheelchair into any changing rooms. We had to use the floor of the disabled shower which was disgusting.

Never again. Clean floors aren’t ideal either, we are talking about large children and adults here.

Getting them out of a chair and onto the floor can be painful and difficult.

That’s if there’s enough space to do so.

Part of me is quite relieved Nate doesn’t understand the indignity of changing on the floor.

But I do.

The frustrating thing is that the simple addition of a fold down changing table in disabled toilets would help immensely.

Some places have huge disabled toilets and I look at the wall thinking I’d know what I would put there.

Eventually we will be limited to visiting places who have hoists….

Campaigns such as, Firefly’s “Space to change”, are incredibly important.

I know for small businesses with tiny premises having facilities like I’ve described is high on impossible.

It will cost money.

However for many attractions and buildings it’s still a lack of awareness and understanding of the actual need preventing them doing something positive for our community.

Even our Great North Children’s Hospital has no facilities suitable to change my son which I find utterly ridiculous, although there are plans in the pipeline I hear.

We are customers too after all.

Searching for Answers

There’s just 14 months between Hugh and his older brother Sean and early on the differences between the two as newborns was stark.

I kept my fears to myself at first, but after weeks of silently worrying I began to voice them out loud.

It was the little things that worried me, he wouldn’t wake for feeds, he wasn’t interested in the world around him, he didn’t make eye contact, but the GP seemed less concerned and friends and family were quick to reassure me, pointing out that babies developed at different rates and no two children were the same.

Yet there was a niggling fear at the back of my mind.

In the summer of 2010 when Hugh was around 5 months old, the doctor discovered that his head wasn’t in proportion with his length and weight.

Coupled with the fact that his development was apparently delayed – he still wasn’t holding his own head up or focusing on things – it was deemed necessary to begin investigations.

For months I’d been convinced there was something ‘wrong’ with Hugh and wished someone would take me seriously, but as soon as there was talk of x-rays and blood tests, I immediately wanted to bury my head in the sand.

Prior to having the boys I’d taught children with autism.

I remember meeting parents who were reluctant to get a diagnosis for their child.

To me, as a teacher, it was simple, a diagnosis didn’t change who they were; it just enabled people around them to understand and offer the correct support.

Yet as a parent I wanted to run from the very tests and investigations that were aimed at finding a diagnosis for my son. I even toyed briefly with the idea of refusing the tests.

I felt a diagnosis would make it all the more real somehow.

It wasn’t just my imagination; there really was something to worry about.

I didn’t want a label attached to him; a word that could be used to describe and categorise him.

Perhaps I should have been careful what I wished for? Months of testing ensued, there were x-rays and ultra-sounds, blood tests and MRIs.

Letter after letter arrived at the house with words I could neither pronounce nor understand.

I took to desperate midnight searches on google trying to decipher the doctors’ jargon. Mostly it was convoluted medical terminology describing his symptoms; hypotonia (floppy), microcephaly (small head) but there was never an explanation or an answer for why he was this way; no diagnosis, no label.

I can still remember how confused and shocked I was when the pediatrician handed me a piece of paper with wiggly lines representing chromosomes and asked if I remembered anything from biology lessons at school.

It transpired that one of the blood tests Hugh had done – a micro-array – had detected that his chromosomes were all there but that some of them were in the wrong place.

Apparently any number of us may unwittingly have jumbled up chromosomes but usually it’s only when bits are added (duplication’s – like in Downs Syndrome) or bits are missing (deletions, like in Cri-Du Chat Syndrome) that this causes problems.

Hugh’s chromosomes were all there though which didn’t really explain the difficulties he was having.

I asked her what was ‘wrong’ with him, what was causing his difficulties, what his diagnosis was.

She explained that they didn’t know and that we may never get a diagnosis.

At that point I genuinely believed we were the only people in the world who didn’t know what was causing their child’s difficulties.

I assumed that once testing began, the doctors would find a cause and we’d be given a name of something that I could Google; support groups I could join with other people who could tell me what to expect. Instead, we left feeling incredibly isolated, having no idea what the future would hold for our son.

I attempted to join local and online support groups but without a diagnosis there really wasn’t anywhere we fitted in.

After hours and hours of searching online, I finally found one other parent in the same positions as us – they too had no idea what was causing their son’s difficulties.

Knowing there was at least one other person out there really helped me feel less alone and scared.

Shortly after, when Hugh was around 1 year old, the charity Genetic Alliance resurrected the project SWAN UK, which stands for Syndromes Without A Name and I discovered that there wasn’t just two of us in the UK still searching for a diagnosis but many, many more.

In fact, shockingly, approximately half of all children with learning disabilities don’t have a definitive diagnosis to explain the cause of their difficulties.

Since then, SWAN UK has gone from strength to strength and I have become an active member of the project helping to support other families who are searching for a diagnosis.

Without a label to explain their child’s problems, some families find that they are not taken seriously or that they can not access adequate help and support.

Sometimes there is the assumption that if doctors can’t find out what is causing the child’s difficulties, that it isn’t that serious or that the child will grow out of it.

Worryingly, some families have experienced disbelief and negative attitudes from school staff and medical professionals.

Often, people find it hard to understand how, in this day and age, with all the technology that we have, that children can still remain undiagnosed.

As the project grows, more and more people are finding out about SWAN UK and more families are able to access support.

Hopefully, we can reach a stage where no-one is left feeling isolated and alone in their hunt for a diagnosis.

Hugh is now nearly 5 years old, he still remains undiagnosed.

If you would like to find out more about SWAN UK you can find their website here: http://undiagnosed.org.uk/ You can also ‘like’ them on facebook: https://www.facebook.com/SWANchildrenUK

Changing Tables

Sometimes you see it as a caring place, sometimes you see it as harsh and sometimes it feels not inclusive to all families.

Once my daughter grew to a size that baby changing tables were too small for her, our view of the world changed.

How would we take care of her toileting needs in a regular bathroom?

On the floor?

In her wheelchair?

Could we both fit into a stall with the wheelchair?

Our world became harder to navigate.

We started to keep a list of accessible places or we timed our trips where there was less chance of needing a restroom.

Or worse, we either had to leave her home with someone or we all stayed home.

Life with a loved one with special needs is isolating, but now we found ourselves even more isolated.

This is not a topic that anyone wants to talk or think about.

Families with loved ones who need special changing facilities are not out there making this need known.

Our toileting habits are private and it’s not a conversation to bring up “just because”.

I used to think that a disabled stall took care of things, but as I personally found out, that is just the beginning of making our communities accessible for all.

As our children grow older, we want them to live their life with dignity.

That includes their toileting needs.

Families would love to include all their family members in their outings, but sometimes the lack of proper facilities limits those times.

Even our local children’s hospital lacks such facilities but the examination table has been offered many times before we leave our appointment.

Businesses are missing a huge client segment when they exclude families with this type of special need.

If one shopping mall offered a changing table in a family restroom and others didn’t, that mall would be the hangout for my family.

Our world has become more accessible and easier to navigate with wheelchairs, but there is still one big reason many families stay home.

It’s time to remove this barrier too.

How To Survive Being Friends With a Special Needs Parent

We’re tired (all the time), we’re busy (all the time), we’re worried (all the time).

We want to be good friends to you too, and we’re very aware that the friendship dynamic has changed as much from our end as from yours.

We forget birthdays, we turn down invitations and we hardly ever call you back when we say we will.

On behalf of special needs parents everywhere, I feel I can say that we still love you and want you in our lives.

To that end, I’ve put together a few tips from my own experience that might help us to maintain these very important relationships as we all negotiate this new landscape.

1. Ask Specific Questions

We understand that you don’t always know what to say – and neither do we.

Sometimes, we desperately want to talk about our children.

We’ll give you details you never asked for, and find it hard to shut up.

We know this can be annoying, but sometimes it’s about overcompensating for the fact that we might not have any ‘big’ news to share (no first steps or first words etc).

At other times, and for the same reasons, the general “How’s Charlie?” question garners nothing but a one-syllable reply:


It’s easier for both of us if you ask something a bit more specific: “How did Charlie like the zoo?” or “Is Charlie enjoying her new school?”

Don’t be afraid to ask the kinds of questions that you would ask about any ‘normal’ child, eg. “How does Charlie like having Mummy all to herself now that Susannah has started prep?”, or “What would Charlie like for her birthday?”

You may think these are hard ones because you and I both know that she lacks communication skills, but you can bet that I’ll have an answer for you anyway.

2. Don’t Feel Guilty About Sharing Your Child’s Milestones With Us

This is a tricky one.

It’s one of those times it’s almost unavoidable that we will feel a pang of pain and you know it.

We know that you know it.

Please understand that we can’t help it – and that we still want to hear your happy news.

This is especially true when we know your children well. We want to celebrate with you! There are a couple of things you can do to make this smoother, though.

Try not to offer your news apologetically.

We can feel that, and it feels patronising and horrible.

Also, don’t feel obliged to ask about our children in the same breath. “Little Johnny took his first steps today, and he’s only ten months old! (insert sympathetic look here) How’s Charlie doing? Any changes?”

This is awful, and puts us on the back foot straight away.

You wouldn’t do it if my child was a ‘normal’ non-walking ten-month-old, so don’t do it just because my child is four and should be walking.

This seems like a no-brainer, but it happens a lot.

Well-meaning friends and relatives make plans to do something that might seem difficult for Charlie, so we don’t get invited – or worse, we get the call that says “We didn’t invite you because…”

The truth is, there are many things that are tough for us and for Charlie.

You’d be surprised to learn what we can and do work around.

There will certainly be things we’d rather not attempt, but please let us make that decision, especially if it’s a family-type outing that we would otherwise have.

3. Talk To Our Children

I can just about remember a time – pre-children – when I had not the faintest idea how to talk to a child.

I was never sure at what level you should speak to them – was asking a three- year-old about school too hard? Too easy? Would it be uncool to ruffle a ten-year-old boy’s hair? What’s taboo with teenagers?

I can remember feeling awkward and strange when I saw friends with children.

I didn’t want to ignore them, but what if I said something wildly inappropriate?

I’m guessing that’s how a lot of people feel about talking to Charlie.

There’s the added possibility of looking a bit silly because she won’t answer you – and perhaps won’t even look you in the eye.

It really means something to us as parents, though, to see you make the effort.

A simple “Hello Charlie, you look cute in your pink hat” or “Lucky you, Charlie – I love chocolate too” is enough.

4. Talk About Other Things Too

Charlie is but one aspect of our very full lives.

Don’t feel like you can’t talk to us about other things going on in both our lives – sometimes we may even appear excited to talk about your tax return! (Well, appear…)

Seriously though, we do watch movies, and we do have jobs and we do have other children, and we still enjoy talking about all of them – yours and ours.

We can even have whole conversations sometimes that don’t have Charlie in them!

Music to Feed the Soul

Lil Z had been admitted to the hospital following a major seizure. She was less than a year old, non-verbal and unable to sit or stand independently.

We hadn’t yet managed to get her on the right combination of anti-epileptic medication to stop her seizures, so it was a scary time.

Added to that, Lil Z was a terrible sleeper and rarely slept more than 2 consecutive hours during the night.

I had tried everything to get her to sleep.

Our house was full to bursting of books written by baby sleep experts, none of which worked in the slightest.

We’d done everything from controlled crying to co-sleeping and none of it worked.

I was an anxious, exhausted wreck, surviving on an unhealthy combination of caffeine, sugar and adrenalin (thanks to the regular ambulance rides to the hospital).

It was in this state that a music therapist came to see us.

Ironically, Lil Z was having a nap at the time, so we talked a bit instead.

I told her about our sleep problems and she suggested that music might help. Since I’d already tried the singing lullabies route, I was doubtful.

Later that day, she stopped by again to give us a CD called “Music for Dreaming” and suggested it might help settle Lil Z.

The music is specially arranged for relaxation and reducing stress.

The rhythm of the music replicates the human heartbeat and the tempo is that of a resting human pulse – all of which should bring about a sense of calm.

Now, I wish I could say that a miracle occurred the first time I put on the music, and that Lil Z fell asleep instantly. She didn’t.

But something unexpected happened.

It soothed me.

In the middle of the night, with a screaming baby, I could rock her and listen to the music and feel just a little bit calmer.

And when I was calmer, Lil Z was calmer – not necessarily ready-to-go-back-to-sleep calm, but less screamy.

I started playing the music on repeat to her overnight.

And even after Lil Z finally started sleeping through the night (thanks to a medication adjustment and a week in a sleep clinic), I kept playing her the music throughout the night.

I also copied the music onto my phone and iPad.

That way, when Lil Z is in the hospital, I can play her the music – something familiar to make her feel safe and secure.

Lil Z now shares a bedroom with her big sister and they both fall asleep listening to the music every night.

Of course this was only the start of our love of music. Lil Z and her sister now enjoy singing and dancing (or in Lil Z’s case wiggling and kicking).

We’ve introduced a dance music playlist to our bathtime routine, which heavily features Katy Perry, Taylor Swift and music from the movie “Frozen”.

It is now Lil Z’s favourite part of the day.

My husband plays Lil Z music from Smooth FM when she’s grumpy and having a bad day.

And music therapy is one of her favourite activities at school.

Hans Christian Andersen wrote “where words fail, music speaks”.

Lil Z may not have words, but she does speak to us through music.