Special Needs

A learning curve that never ends

I have a little daughter with special needs.  She is nearly four now and is our absolute pride and joy.  She is funny, adorable, cute as the proverbial button, cheeky, demanding, learning new things all the time, and just developing a highly irritating whinge when she doesn’t get her own way.  Just like the average nearly four year old!!  She has Dandy-Walker syndrome, arrested hydrocephalus, infantile spasms and global developmental delay.  She is the centre of our world, and like most other parents, I can scarcely remember a time when she wasn’t here.  All parents will agree that your life changes beyond all imagining when you have a child.  In our case our lives took a direction we could never have foreseen.

The world we were so happily inhabiting ended for us on April 18th 2007.  We had found the house of our dreams and had applied for planning permission to extend it.  We were in a secure financial position.  We were two years married and expecting a much wanted baby.  Life could not have been any sweeter.  And then in the moment that it took an obstetrician to move the wand of an ultrasound scanner over our unborn baby’s head everything changed.  He had been chatting away to us all the way through the scan, asking us about names for the baby and generally putting us at our ease.  Then the instant he scanned the little head, he stopped talking and we knew, with the gut-wrenching certainty that everything had changed irrevocably, that something was very very wrong.  He asked us to sit down and told us as gently as anyone can possibly deliver terrible news, that our baby had hydrocephalus, or water on the brain as it is commonly known.  We sat in the consulting room with the obstetrician and a senior midwife for  – I have no idea how long.  I remember asking would our baby die?  Would the baby have brain damage?  Learning difficulties?  Kindly and gently he explained to us that he couldn’t tell us because it was simply impossible to tell.  I remember crying and crying and crying.  Then eventually having to leave the room – it was a busy antenatal clinic – and walk with my husband and the midwife into a corridor full of other pregnant women.  We were taken to another room with the midwife who also handled us with such gentleness and care.  After some time – again I’ve no idea – we left the hospital. They arranged an appointment for us to see a foetal anomaly specialist in Dublin’s Rotunda hospital which would be in a week. Later that night we did what everyone tells you not to do and we googled and read up on hydrocephalus and what it might mean for our baby.  Eventually we convinced ourselves that maybe the obs had made a mistake or wasn’t sure and that was why we were going to see a specialist.  And even if the baby did have hydrocephalus, we read about shunts and therapies and were sure everything would be ok.  The baby might have some problems but all would be fine and we’d get through it.

Clutching onto that manufactured positivity is what got us through the next week until we went to Dublin to see the specialist.  And then our world which had moved from blissful to fragile in the merest second a week earlier, now crumbled and fell apart completely.  That day  I had another scan, far more detailed than the one in our local hospital, which told us we were having a little daughter.  The scan took 45 mins for most of which I had to lie on my back (junior being breech and facing in) and I was 29 weeks pregnant.  Any mother reading this will appreciate how physically uncomfortable that was.  Once that scan was over we sat in a very plush office in a building at the Rotunda site (we’d gone private for this in order to have the appointment as quickly as possible) and listened to an extremely nice and hugely knowledgeable man tell us that not only did our little girl have hydrocephalus, she also had Dandy-Walker Syndrome.  I’m not going to go into great technical detail here, but it is a neurological condition that affects the cerebellum.  In our baby’s case her cerebellum was tiny  – far smaller than it should have been – and there was a cyst where the cerebellum should have grown.  By this stage we were both crying.  I think it was the first time I had ever seen tears stream down my husband’s face.  We asked innumerable questions, our anguish and pain spilling out in a desperate search for answers.  The specialist told us everything he could but the phrase that stuck with us the most was that, in his opinion, the prognosis was “poor at best”.  Four years later I still don’t have the words to adequately describe how we felt.  Shocked, scared, bewildered, sick, heartbroken…..none of these come even close to explaining the maelstrom of emotion that swept our world away that day.

I’m not going to go into the minutiae of the remainder of my pregnancy, all I will say is that over the remaining 10 weeks and 2 days my mind kept running back and forth over three questions:  why did this happen to us?  would I be strong enough to raise a child with disabilities?  what kind of life was our little girl going to have?

The first is something of a rhetorical question.  We found out a couple of years later that Fionnuala (our daughter) has an extremely rare autosomal recessive genetic disorder called Buttiens-Fryns Syndrome and that is what caused her to have Dandy-Walker Syndrome.  I want to point out here that the vast majority of people with Dandy-Walker DO NOT have Buttiens-Fryns.  That just happens to be our experience.  But the question of why?  goes beyond the literal how did this happen? to why did this happen to us?  Yes we all know that there are babies born with disabilities every day.  And yes we all know too that people with disabilities are just another part of the community (or least should be).  And that someone has to be the ‘one’ in the ‘million to one’.  But knowing all of that logically and analytically does not help us to know it emotionally.  I still have times when the unfairness of it all hits me again and when I hold my daughter on my lap those times, all I can think is “why did this have to happen to you?”

The second question was less rhetorical – I determined that I would be strong enough.  Little did I know then just how strong I – and my husband – would have to be.  It was at this point that the internet really became important to me.  Without the help, love and support of countless women  – the vast majority of whom I have never and probably will never meet IRL – on sites like BabyCentre.co.uk and most especially magicmum.com, I would have found the remainder of my pregnancy infinitely harder than it was.  That’s not to say having these women to chat to made it all go away. Far from it.  But to be able to chat online to women who had been where I was and whose babies (albeit with different conditions) were now 1 or 2 or in pre-school, gave me hope and self-belief that if they could do this then there was no reason why I couldn’t as well.  I’m still a member of MagicMum and I hope that I have helped other women through that awful time as I was helped through it.

I’ll come back to the point about having to be stronger than we ever thought possible in a minute.  The third question was what kind of life would she have.  We knew nothing about provision for children with disabilities in Ireland.  But we are both intelligent people and we figured we’d learn.  And by god have we learnt.  We have learnt that children with special needs benefit hugely from early intervention.  Fionnuala was referred to the early intervention team when she was just three weeks old.  This was courtesy of her paediatrician in Cavan who initially met us 2 weeks before she was born and who has excellently overseen her care ever since.  At 4 months old Fionnuala began therapies with Enable Ireland, physiotherapy and occupational therapy to start with and later speech and language therapy as well.  We have learnt however, that not all children receive intervention as quickly as Fionnuala did and that some are waiting months, and in some cases years, to be seen by the relevant therapist.  If early intervention is considered (rightly) to be so vital, then why are children waiting so long?

We learnt new languages and new jargon – we rarely say ‘Dandy-Walker Syndrome’ to each other now, its DWS in our home.  We have learnt and understood terms like hydrocephalus, ataxia, macrocephaly, agenesis of the corpus callosum (which for months came out as coliseum whenever I tried to say it!) etc etc etc.  We have learnt just how overcrowded and busy this country’s children’s hospitals are.  Fionnuala is an out-patient of both Temple Street and Crumlin hospitals as well as Cavan General and has received excellent care in all.  But I have lost count of the interminable hours we have wasted away in waiting rooms, in stuffy and overcrowded corridors just waiting for another check-up, another assessment.  Every time we have an appointment I come away in awe of the work done by the staff and how they – especially the nurses – manage to keep going and to be patient and welcoming to each overwrought family, to put each nervous or scared child at their ease.  I know I could not do their job.

One of the hardest things we have learnt is that a lot of people don’t know how to react to you when you tell them that you are expecting a baby who will have a significant level of disability.  Some say nothing, for fear of upsetting you still further.  Some comment that “God only sends special children to special people”  – well I know some would find that comforting but I find it patronising and irritating.  Once the baby has arrived and everyone (ourselves, therapists, medics) have a much clearer idea of how she is doing, some others go into a form of denial “I told you there was nothing wrong with that child” etc…..

And we are still learning as Fionnuala carries on her merry way.  She is going to be 4 in a few weeks and since September of last year has been attending a local mainstream pre-school with the help of a pre-school assistant (essentially a SNA or Special Needs Assistant).  This has done a huge amount for her, she has friends there now and her social development has come on in leaps and bounds.  It has also – most importantly – helped her to learn a measure of independence, in that she can be away from us for a few hours and everything will be fine.  That is the first step on a very long road.

Somewhat naively we thought that it would be straightforward enough for Fionnuala to get all the help she would need for her formal educational career.  But we are now learning from friends who have children with special needs, from the work of the Special Needs Parents Association and from cases we read of in the media, that it is not so straightforward.  We knew that many children with special educational needs and disabilities of all kinds are now integrated into mainstream schools and that resource hours and SNA posts were available to give these children all the assistance they would need to help them have that which is a basic right – an education.  But we have learnt that there is a cap on SNA posts and resource hours which is affecting children all over the country.  Just last week good friends of ours were told that their daughter who has a place in mainstream national school for September will not have a full-time SNA and they are currently waiting to hear how many hours she will receive.  The stress this kind of treatment puts on a family who have a child with special needs is indescribable.

Fionnuala is likely to attend a special school when the time comes, and that is fine with us if it is the best place for her to develop and reach her full potential.  But even special schools are not immune from these cuts and shortages.  The son of other good friends of ours went 29 school days earlier this year without full SNA help in a special school owing to cuts.  Another little boy we know is waiting to hear if he will get the help he needs to attend the same school in September.

So we are still learning.  But now we are learning probably the hardest lesson of all for parents of children with special needs – that we are going to have to fight for everything.  And we are strong enough.  We’ve had to be to get this far.  But at times I despair of my strength lasting out.  It has to, I have no choice.

Being a parent is hard work.  Being the parent of a child with special needs is so much harder.  But having to fight, to march, to campaign, to endlessly email politicians, educational officers, health providers, civil servants, just to get basic health and education services for your child makes it all far harder than it needs to be.  And it is nothing short of an insult to our children and to us, their parents, that we have to do this.

13 thoughts on “A learning curve that never ends

  1. Brilliant blog post. The red tape here is just mad.
    I’ve lost count of the amount of battles I’ve had to fight just to get Jono the help he needs. It’s hard enough having a child with special needs without all the other problems.
    Fionnuala sounds like a wonderful girl x

    1. Thanks Val! Its somewhat dispiriting to know that you have had to fight battles for the last 18 years that are still having to be fought today. Sometimes I despair of things ever changing in this country …… but we have to keep on fighting and we will. See you at the Dáil in a couple of weeks?? Love, T xx

  2. I really loved this blog, so well written, Fionnuala is very lucky to have you both. By the way the phrase I hate the most is ‘God only gives special children to special people’ or God gives these children to those who can handle it! I am in complete agreement on how much that irritates me. Andra

  3. Great post and I seem to have found myself inadvertantly now a blogger! This is new to me but now that I’m here I’ll explain the ‘neverending22q’ bit. Rare (but common) chromosomal disorder caused by a micro-deletion on the long arm of the 22nd chromosome. It actually doesn’t ever end – none of our stories end and this is the bit that got me “But now we are learning probably the hardest lesson of all for parents of children with special needs – that we are going to have to fight for everything.” We do – and you will. This is the piece that has not changed, very often when this argument crops up it’s said, “but look how things have changed, people with disabilities are treated so much better now than they were 20yrs ago”. That maybe so but their parents have never, ever had to stop fighting for them, even when they’re older. My daughter is nearly 28 now, one of the mum’s in our group has an 8yr old, she and I do a lot of the same things, hospital appointments, educational assessments, explaining 22q to professionals too numerous to mention, keeping up with latest research, always anticipating the ‘next step’, going to conferences and fighting, fighting for entitlements, recognition, respect for our childen as people. The list is endless, the story is endless. When my daughter was four and even without a diagnosis at that stage I couldn’t envision the future, I certainly had no clue about the ‘never-ending’ aspect of having a child with complex needs.
    Fionnuala, I just have to remark on the hugely positive diagnostic approach that you experienced – I have heard stories that have made me so angry at the way similar news was diagnosed.
    best and warm wishes to all.

    1. Thank you so much for your lovely reply. I’ve been away so only getting to read these now. Yes it is sickening that things have not really moved on in 20 or 30 years. We are still fighting, all of us, just maybe the battles have changed somewhat? Yes we were treated very sensitively at the time of diagnosis and I am thankful for that, but like with so much else, that should be the norm. Sadly, it is so often not the case.

      All the best, Tracey (Fionnuala’s mum)

  4. Hi there,

    Great blog post.

    I have followed your story on MM ever since your pregnancy and have kept both F and yourself in my thoughts since then.

    Lorna x

  5. I have an angel with DWS as well … But we are in the
    United States – right now she is getting the therapy she needs but things are changing and soon we will have to fight for what we need for her … I fear for what the future holds as our government dismantles Medicaid and reforms healthcare – what will become of the resources my angel needs? Your strength and activism is inspiring!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.