A Road Well Travelled

Why does being a parent of a special needs child have to mean a lifetime of tough decisions, fights and guilt?

As if having a child with health worries, developmental delays and a multitude of other concerns wasn’t enough for parents to cope with, we also have to become the decision-makers on many (if not all) milestones in their lives.  And most of those decisions are made over subjects that we’re no experts on (but we do have to become as well-versed and informed as we can be).

For example, for a typical child, the path of education is a well trodden one.  We know that when they reach a certain age (actual age depends on which country you live in), they enrol in school and begin to learn from a curriculum that has been carefully built by professionals, tested and used with success for years.  It will have been tweaked and continually monitored to ensure that it is the best and most suitable curriculum it can be.  You enrol your child in school, you have the excitement and nervousness of their first few days, then they settle into their new routine and follow the path that has been mapped out for them.  There may be some hurdles along the way, frustrations with teachers, issues with certain policies, conflicts with other children – there will always be bumps on the road – but the decision-making process for where your child will attend school, what they will learn and who will work with them along this path, has already been made.

For a parent of a child with special needs, it’s not so simple.  The big debate is whether to send your child to mainstream school, and with that comes the fight of getting 1-1 support if you feel it’s required, or to a special needs school.  This sounds simple enough but there are so many different factors to take into account.  For many of our children, it’s not a clear-cut decision.  There can be advantages and disadvantages to both – and it is a situation that must continually be monitored to ensure that the decision you made in the first month, is still the best one in the third month, sixth month and so on.

What if you can see benefits to each of the options, and are stuck with what direction to turn next?  What if you desperately need advice from the ‘experts’, the professionals who have lived and breathed educating a child like yours and can describe the successes and failures?  But what if you can’t find that expert, that professional, because nobody has encountered a child like yours before, and they don’t know what the best option is? You have to become the ‘expert’, you have to become the decision-maker on the path your child should make with their education – but other than your own education (decades ago!), you have no other experience in the world of teaching and schooling.

What if you look at all the options and feel that a mix of each of them might be best suited to your child?  But what if you are then presented with a barrier because your child doesn’t quite meet all the criteria for the input from one of the education options?  What if the next step is to fight for something you hope will be a good cocktail of education methods because it’s what your gut tells you.  It could be a wasted fight because your argument might fall on deaf ears and not actually come to fruition; or your fear that what you’re fighting for isn’t actually the answer might become apparent and you feel like you’re wasting yours and everyone else’s time.

Deciding the best path for your special needs child is incredibly difficult and exhausting.  And it comes with very little guidance and support.

We’re into year 2 of Tilly’s primary education and although we’re happy with how she’s developing, and how she’s coping, we are questioning when the right time to move her from mainstream schooling (with full-time support) to a more specialised schooling  approach should be.  She’s happy, she’s busy and she’s managing well – but we know that there are areas of her own particular development path that could be met in a better way at a specialist school that is attached to her mainstream school.  BUT…getting access to that school is not straightforward.  There is strict criteria to be met (which I’m sure Tilly will fail) – and I’ve heard that it is a fight that has been lost by many parents before me.

There is another option for her which is a 20-30 minute car journey away (not fantastic for a girl who can get car sick after 5 minutes) but my gut instinct tells me its not the best place for her – not yet anyway.  The benefits of mainstream schooling still outweighs this option.

So what do we do…settle for what we have, send her somewhere I don’t yet feel is right for her or fight for what we hope will add that little something extra, something that could nudge her development along that bit further?

There is only one answer.  I will fight – like I always have.  I’ll give it my best shot, I’ll get prepped, will get my case ready to present.

But seriously, why does it have to be so damn hard?  We need a break, we need our role as parents of special needs kids to become easier.

We need someone, somewhere, to make it easier.   A road well travelled.

 

 

 

 

Helicopter mum

The schools return tomorrow – hurrah!!

Don’t get me wrong, I’ve had lots of fun with the mini-Scotts but jeez, my daughter is becoming such hard work.  She’s developing at a rate of knots which is great on one hand, but on the other hand, I’m exhausted, a little exasperated and to be completely honest, terrified.

Exhausted – she is on the go constantly.  She really is like an overgrown toddler.  I remember that stage with her little brother but my saving grace was that he was small enough to lift up and move, and he still had a couple of naps each day.  Tilly is 7, and thanks to a healthy appetite, has gone from a skinny little girl to a solidly built girl who can proudly stand next to other 7-year old girls and not look out of place.  But picking up a naughty 7-year old isn’t an easy task.  My already broken back can’t cope with it.  And like most other 7-year olds, naps are a thing of the past.  This girl has energy!  If I put my Fitbit on her, I’m convinced she’d out-step me most days.

Exasperated – during toddlerdom, most parents realise they have to inject some discipline into their child’s lives in order to tame the most wilful of toddlers.  I had one of those wilful toddlers in Tilly’s brother so I dipped into a couple of books to get a little bit of advice and direction.  It didn’t take long because I worked out what did and didn’t work – as his communication and understanding improved, it was easy to use ‘friendly threats’ and ‘mini forms of blackmail’ to get him to listen and improve his behaviour.  With Tilly, her communication and understanding is still extremely delayed so many of those tried and tested tactics are completely lost on her.  As far as I know (my google investigations haven’t been fully explored), there isn’t a book I can refer to for tactical moves on this one.  So, after a week of school holidays, and her naughtiness testing me to the limit, I feel infuriated with her – and annoyed with myself for not figuring out a solution.

Terrified – just when you get used to the path that you’re travelling down, an unexpected bend suddenly throws you into a completely different direction.  You feel lost, scared, alone and worried about where you’re going to go next.  That’s where I am (again!) with Tilly.  Her personality is becoming more apparent; the diva-like behaviour I’ve heard friends’ with daughters talk about is beginning to emerge and the sheer determination she has shown throughout her 7 years, a trait I was incredibly proud of, is actually causing me problems!  Tilly and these development leaps that she keeps making are throwing me off-kilter – and it terrifies me.  What if I don’t find a way to adjust to her and her new ways, what if it gets worse and I lose control of her behaviour?  What if I find it more and more difficult and need extra help?  What if I can’t cope with her by myself? What if her new adventurous and brave tendencies cause her to have an accident?  She’s tall enough and inquisitive enough to reach for most things on the kitchen worktop, such as knives, pans of boiling water – its not happened yet but is it going to happen one day when I’ve turned my back for a few seconds?  I will try my best to scan the room we are in for potential hazards but what if I miss one? What if her new skill of opening the front door and having a stroll in our garden results in her one day (on a day I’ve forgotten to lock the door)  walking onto the road outside our house and not seeing a car, or going further away from the house without me knowing?  I will protect her and ensure that I’ve made her environment as safe as I possibly can but what if she catches me out one day?  What if something else needs my attention first and I’m not quick enough to catch her in the act? I’m not a helicopter mum to her brother and I can see how his independence and confidence grows the more I let him try out things by himself – but I will have to be (no, I am!) that type of mum to Tilly.  I don’t have an option.  There were areas of our house I would be happy with her going to by herself because I knew she wasn’t able to, or wasn’t interested in opening drawers, doors, cupboards.  She wouldn’t attempt to climb. But she is doing all of that and more now – her motor planning skills are improving (yay!) but she can now figure out how to open the bathroom door, lift the toilet seat and stick her hands in the water (no!); how to open drawers and pull things out.

Until her development in play begins to improve, and she no longer finds it fun to play with objects she’s not meant to touch (is that purely exploratory, or is there an element of her knowing that it annoys her mum??) I will have to be that helicopter parent and shadow her every move.

In the meantime, I will continue to experiment with ways of disciplining her so that she understands what is right and wrong; and what is dangerous and safe. The cheeky smile she gives me when I tell her off, the giggling and the way she returns to the crime scene whilst giving me those knowing glances all lead me to believe that her communication and understanding are way better than I give her credit for. Wish me luck!  I’m going to need it.

The next chapter

I’m not really sure where to start with this post.  But I’ve wanted to write about something for a little while now, something that I think has been the cause of me feeling a little low for a few weeks.

This may end up being a rather self-indulgent post as I don’t intend to write about Tilly – I want to write about me.  Because I, Tilly’s mum/carer/part-time therapist/spokesperson/advocate, also have needs and issues that have become part and parcel of this different journey that we are feeling our way through.  I want to write this post because there might be some mums out there who are further down the road in their journey than I am who can provide some inspiration, motivation, encouragement to taking a leap on to my next path.  But also, to the mums out there who are where I was a few years ago, or who are feeling like I do now – lets share our stories so we know we’re not alone.  Lets encourage each other to have the courage to take a small step away from our roles as carers to rediscovering who we are and what we are good at outside of the realms of caring.

A little bit of background

Before I fell pregnant with Tilly, our first born, I had a decent job in Marketing.  In fact, I had just been given a promotion that I’d campaigned for and was feeling positive about the future of my career.  But my pregnancy wasn’t a straightforward one and was fraught with fear (we were told at our 12 week scan that something wasn’t ‘right’ with our baby, which led to numerous tests and resulted in us finding out that she had a heart defect) and pain (I suffered from symphysis pubis dysfunction, or ‘SPD’ from around 5 months –  walking hurt, climbing stairs hurt, standing, sitting, lying down, everything I did hurt).  My job suffered as I had to take time off for tests, and as the SPD pain worsened, I had to admit defeat and, at 6 months, was signed off work for the remainder of my pregnancy.

When Tilly was born, we were thrown into a world that we had no idea we were about to enter.  She was born at 10.30pm on 1st July 2009 – we were told before she was born that they would have to take her away as soon as she arrived to give her a good check, due to her heart defect.  We were in such a state of delirium & exhaustion that when she was born, we didn’t even notice that she wasn’t breathing – it wasn’t until around 4 weeks after her birth we noticed on a letter from the Consultant Paediatrician to Genetics that she had to be resuscitated.

The next day was the day that the future we had dreamt of having with our baby girl was turned upside down.  A consultant pulled us into a small, dingy side room (well, eventually he did – the delivery of his bad news began in the ward during a very busy visiting time until he realised that perhaps it wasn’t the best place to break bad news to new parents!!!).  He proceeded to tell us that he didn’t know what it was, but he felt that there was something seriously wrong with our baby.  He talked about her heart defect, her talipes (club feet), dysmorphic features (I still hate that word but basically it means features that are abnormal from a typical baby) and how he felt there was something wrong with her genetically.  We were utterly devastated, and the scarring from that day hasn’t healed – at a time when new parents are bursting with pride and excitement, when hormones are all over the place and exhaustion from the previous 36 hours has set in, the way in which this doctor broke the news to us still makes me angry, sad.  In fact a whole range of emotions that I wish I didn’t have to feel.  He completely destroyed a time that new parents should relish.  And sadly, what followed over the next few years was a journey of fear, suspicion, sadness and worry.

I could write a novel about that time of our lives but thats not what I want this post to be about – maybe I’ll write more about it some day!

This is about how what happened next, led to my career being abandoned.

But not immediately.  I did return to work when Tilly was around 14 months old, and although I tried hard to focus on my role, I had to take a significant amount of time off for hospital appointments and illnesses (she caught every little virus going in those early years).   After a few months, I then decided to take some unpaid leave to focus on Tilly’s development – she was still very behind on milestones, still being tested to find out what the bigger picture was, and I felt an immense amount of guilt going to work and leaving her.  I was her mum, I should be at home doing everything I could to help her develop.

After a couple of months of being at home with her, I discovered that I was pregnant again – a complete surprise as at that time, we didn’t think we wanted to have another child.  But sometimes, I believe, things are meant to happen.  And that ‘thing’ was Tilly’s wonderful little brother, Elliot.  He was born without any heart defect, any abnormal features – he was a healthy, hungry baby boy.  And he allowed us to experience that new parent feeling in hospital that we always felt we missed out on with Tilly.  But it was bittersweet as it amplified how awful the experience with the paediatrician was.

Anyway, fast forward to Elliot’s 1st birthday.  I had planned to return to work after his 1st birthday because it was what I always expected that I would do after having a family.  Since leaving school, I had worked and didn’t expect that having children would put a halt on my career.  However, several changes had happened in the department I worked for and I was called into a meeting to discuss my role.  I was told that I wouldn’t be returning to my previous Marketing Communications job that I’d worked so hard for but I was being offered a role similar to one I had done at the start of my career 10 years previously.  I felt betrayed, angry, discriminated against and went straight to the union rep to discuss my options.  To cut a long story short, I was offered voluntary redundancy .  As they refused to give me my old job back , I took the redundancy and walked away from the career I’d had for 10+ years to focus on raising my children, and became full-time carer to Tilly.

And here we are now…

Tilly is now 7 years old, in mainstream school 5 days a week, settled and happy.  For the first time since before I was pregnant, I feel that I can start stepping back from my role as carer for a few hours each week – and perhaps I can get myself some work again!  The extra money would certainly be good.

But I’m stuck, I don’t know where to turn next.  I’m not sure what type of employee I’d now be – my eyes have been opened to a different way of life, to a life that has more meaning than the one I’d lived before Tilly & Elliot came along .  I don’t think I’d tolerate the ‘office politics’ that were such a big part of my previous job; I would need time off for hospital visits and appointments; and I would need a large degree of flexibility to allow me to continue with caring for Tilly outside of school.  It’s easier with Elliot – he would easily cope with breakfast clubs, after school clubs, holiday clubs, playdates with friends, sleepovers etc if I had to be at work.  But with Tilly, that isn’t an option.  I would have to find specific care for her, and sadly, that just isn’t available where we live.

Whereas many of my counterparts have been able to return to work, I’ve found it difficult because Tilly’s needs were and will continue to be greater than children her own age, or significantly younger – Elliot, at age 4, is already way more independent than his sister.  I feel I’ve been left behind and am scrambling to catch up.

I’m now in my forties (early!), my confidence has dipped, my CV isn’t as good as it used to be and I’m still a carer to my daughter with additional needs.  But I want to be more than her carer, she deserves more than that, as does Elliot, so I’ve got some more avenues to explore.  I’m sure that there must be something out there, something I can do for myself – I’ll just have to keep looking so that I can start the next chapter of my own journey.

If you are reading this and any of it resonates with you, please get in touch, I would love to hear from you.

 

 

Gone to the beach

We went to a fantastic birthday party on the beach this morning.  It was Tilly’s little brother’s friends’ 4th birthday, so what better place to have a birthday party during the summer holidays when you live on the coast!  I don’t know why none of us have come up with the idea before now??!!  All the kids loved it – Tilly’s brother was in his element; searching for treasure, pulling hard at tug’o’war, paddling in rock pools, toasting marshmallows on an open fire and, to top it off, eating chips!  He had the best time.

I had planned to take him to the party by himself, and leave Tilly with Granny as I knew it would be slightly easier for me.  Up until recently, beaches were somewhere that completely threw Tilly off balance.  The soft, uneven sand was too much for her brain to cope with; her vestibular sense tested to the limit.  We take it for granted that our brain can process how to walk on sand – it instinctively plans the movements our legs, arms, torso, head and shoulders have to make to keep us upright and balanced.  The sensation of the sand on our feet can be strange at first but our brains quickly process the texture and how it feels so that we can accept the new texture and continue walking or standing in it with ease.  Not so easy if you suffer from Sensory Processing Disorder (SPD), as Tilly does.

But at the last minute, as we were getting ready to leave the house and when I watched her excitedly walk out to the car with her brother, probably thinking we were going off on an adventure (I’ve been trying hard this summer!), I changed my mind and took her with me.

It started off well because as soon as her little feet hit the sand, she was off!  Strutting along the beach with the biggest smile on her face.  I couldn’t believe she was actually walking so freely on sand, yay!!  Albeit, she did walk through a puddle along the way and her socks and shoes got soaked but thats part of the fun isn’t it!  She continued to make her way to the large rock pool all the other kids were gathered around, and I quickly removed her shoes and leggings so she could enjoy paddling.  I set up our picnic blanket and chatted to my friends, feeling quite pleased with myself for changing my decision at the last minute and thinking that perhaps Tilly was going to enjoy herself on the beach for a change and that I would too.

It wasn’t long before Tilly’s paddling turned into full on bathing – she sat herself down in the rock pool and splashed away.  Her favourite thing to do at home is splash and pour water over herself in the bath so she was in her element.  But that was when I could feel myself getting tense.  The fun and socialising aspect of Tilly’s visit to the beach was over – it had been replaced by sensory seeking behaviour which I knew could quickly change from enjoyment to frustration on her part.  From the outside, or to someone who doesn’t know her very well, it looked like she was having a ball.  And it started off that way.  But as soon as I saw her expression change to a serious one, her splashing become more frantic and her body shivering from the cold, I had to take her away from the pool.  Sadly, she doesn’t (yet?) have the ability to recognise the sensory signals that what she is feeling is no longer enjoyment but irritation, frustration and cold.

I got her dried off, gave her a snack and the second shock of the day was that she actually stayed sitting on the picnic blanket with me.  I was convinced she’d be off scuttling back to the pool as soon as I let go off her!  I began to relax a little again – until she started playing with the sand.

Sand is another big sensory ‘thing’ for Tilly.  I say ‘thing’ because, like water, it can give her a lot of enjoyment – but, it can quite quickly become too distressing for the sensory processing part of her brain to cope with.  So I’m not too sure how to describe it!  Again, I have to watch her intently to spot when the enjoyment switches to frustration…which brings an end to my relaxing time.

Unfortunately the switch flicked a little earlier than I was prepared for so the result was a little girl with no form of communication who was suffering from sensory overload.  She was covered head to toe in the sand that she had been loving playing with one minute, to suddenly hating the feeling of every single grain of the disgusting texture that was stuck to her skin, in her hair, down her nappy.  Her sensory seeking behaviour suddenly changed to sensory avoidance and the happy walking on sand I’d witnessed when we first arrived was replaced with her refusing to walk and me having to carry her.  There was nothing I could do but get her home and in the bath.

We are quite lucky in that Tilly’s ‘sensory overload’ results in moans and whimpers rather than a full-on meltdown, but it still breaks my heart to watch her struggle with feeling uncomfortable, unsettled and unhappy after an activity that many neuro-typical children (her brother included) love and are able to enjoy as part of a social gathering.  For Tilly, the sensory input the beach provides is overwhelming and overstimulating to the point that she has no interest in the social aspect of being at a beach party with lots of other children.

Its another hill we have to climb on this journey of ours.  We have to find a way of combining the sensory input the beach provides with the social enjoyment of being around others so that family trips to the beach can be a fun and relaxed activity rather than the tumultuous affair it has been to this point.

Perhaps there is someone out there reading our story who has some experience to share or advice they can give?  We’d love to hear from you.

In the meantime, I think little & often is key.  But regardless of how today went, I’m still glad I was brave enough to take Tilly.  Elliot and his friends had an absolute ball and thanks to fantastic hosts, he hardly gave me a second glance so he was completely unaware of the attention I had to give to his sister (again).