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.

 

 

 

 

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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.

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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.

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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).