Claire’s Story

I became pregnant with my 4th child Kate at the age of 39. All seemed well until the Tuesday 32 weeks into my pregnancy when I didn’t feel well at all and took myself off to my GP. He suspected that I had a gastric illness and sent me home with Imodium tablets. I told him that the baby hadn’t moved all morning and he advised me to go to the local hospital if she still hadn’t moved by end of the day.

Unfortunately the discomfort that I was experiencing turned out to be labour pains but they felt different to my previous pregnancies because the baby was breech. When my waters broke at home, 2 hours after seeing my doctor, only then did I realise the seriousness of the situation.

Kate hung on until we got to the hospital where she was born breech ten minutes later and 8 weeks early and whisked off to the special baby care unit  suffering from RDS (respiratory distress syndrome).That evening, after being ventilated and quietly baptised she was transferred to Holles Street maternity hospital intensive care unit in Dublin.

Myself and my husband travelled up to Holles Street the following day and  there began 2 weeks of hoping and praying. Kate was described to us as being ‘septic’ meaning that she had a widespread infection and we were warned that she was very sick. She was on 3 different antibiotics and a drug to keep her sedated. She was covered in needles and one by one her veins would collapse and they had great difficulty finding access. Her lungs collapsed one after the other and she developed jaundice so had a bright lamp over her for a few days. On the Thursday of the week of her birth, following a routine ultrasound scan on her brain, it was explained to us that Kate had had a grade 3 IVH (intra ventricular haemorrhage) and that there was a 50% chance that she would have some level of brain damage. The following Tuesday they rescanned and to our huge relief the bleed had stopped. However it was also found that in one area the blood had caused a cystic hole in the surface of her brain so it was now highly likely that she would have suffered brain damage.

Kate had 3 blood transfusions and a platelet transfusion and gradually she began to improve. She was being fed through an NG tube (nasal gastric tube) as she had no suck reflex but her lungs were doing better and she was breathing on her own without any help. The wonderfully dedicated team of doctors and nurses were happy enough after 2 weeks to let her go back to our local hospital to establish feeding before coming home…

Well that was the plan.

When she arrived at the local hospital Kate began to have seizures and the following day they decided to transfer her back to Dublin- this time to Temple Street Hospital because her head circumference was growing too fast and they suspected that she was developing hydrocephalus as a result of the brain haemorrhage.  This build-up of pressure from the excess CSF fluid was causing the seizures. On arrival in Temple Street she was put on the high dependency unit on St Michaels B and stayed there until she was 6 weeks old when she had a shunt operation to drain the fluid that was building up and putting pressure on her brain. After a few days recovery Kate was transferred back to our local hospital and then, after I was shown how to change her NG tube we were allowed to bring her home. By then she was 8 weeks old and we were bringing her home on her due date.

The weeks when Kate was in hospital in Dublin were extremely difficult because we had 3 other young children at home- her brother was only 15 months old when Kate was born and was still only a baby himself. In Holles Street Hospital there was nowhere for parents of sick and premature babies to stay. On the first night I was given a bed on the gynaecological ward and the following night they let me stay in a room opposite the unit which had been converted into a room for parents who lived outside of Dublin. After 3 nights I had to vacate the room to make way for another parent and then travelled up daily by train which was exhausting and expensive.

A few weeks after bringing Kate home we brought her back to Temple Street hospital for an MRI scan. The scan showed ‘significant damage’ to her brain’s white matter and we were gently talked to about the possibility of cerebral palsy.

However this diagnosis wasn’t formally given to Kate until she was 4 years old. The other difficulties she has apart from hydrocephalus and cerebral palsy are epilepsy, which is well controlled by her meds, profound hearing loss in her right ear, a visual impairment called CVI (cortical visual impairment) and autism. Each diagnosis takes some getting used to but we always remind ourselves that no matter what, Kate is Kate and she is the same after the diagnosis as she was before it. It’s just that we can better understand and appreciate the challenges that she faces each day and our love, admiration and pride in her achievements continue to grow.

Kate is now 8 years old and is in first class in mainstream school where she has an SNA and resource hours. She’s generally happy, loving and funny and definitely enjoying her life.

 

Lourdes Story

My name is Lourdes and I am from Spain, I came to Ireland about 20 years ago and immediately fell in love with the country, some years later I met my husband and we are now happily married and have two children, 9 and 7.

When Conor was about 8 months old we noticed there was something very unusual, he was extremely quiet and could stay in the same corner without moving for ages. He also felt floppy.

Every time he had a review with the nurse I mentioned this to her, but she kept telling me not to compare him with Killian, that every child is different, etc.

When Conor was 10 months old I could not wait any longer, so I booked a flight for the two of us and headed to my home city (Madrid) and brought him straight to a neurologist. The minute he saw him, he said: Yes you are right, there is something very wrong with this child, I can tell by his features that he has a genetic syndrome, a syndrome that perhaps you will never get to know much about but I can tell you that your child is not a typical child and when he is older he will have a mild or moderate delay but I have no way of telling that until he is older.

 

When I left the consultation room I cannot even describe how I felt, my mother instinct was right, but I was hoping more than ever to be wrong… once thing is having a feeling and a totally different one is to be told by a specialist what you suspected all along… I usually love being right, but this time I hated it… My head was spinning around and I could not stop crying, my mum was also with me in the room, and she is the strongest woman I know, but she was also crying like a baby. When my father met us in the waiting room he was quite frightened… we explained as we could but I think we were all numbed for days… When I called my husband, he was also crying over the phone, quite scary considering I had not until then experienced to see my mum or husband cry so I then knew we were in trouble and we had all long journey ahead of us.

Unfortunately the neurologist was right and eventually when Conor was 1.5 years of age when he was diagnosed with a genetic syndrome, so rare that it does not have a name and the geneticist to date has not found any other child in the world with the same syndrome.

Because of it, Conor presents with a moderate intellectual delay, he has no speech and is not toilet trained yet. Two years ago he was also diagnosed with autism and that was a very happy day for me, can you imagine??? To be happy, because your child has been diagnosed with ASD! How wrong is that? Well, it is WRONG, and I thank the Government for it….. without the ASD diagnosis he would have been unable to access a unit and he would have been so lost in mainstream… the diagnosis meant he could now access some services, however at the moment he has none: He cannot access autism services because he has a moderate delay and he cannot access KWEST Services because he is autistic, sounds like a joke, but is not a funny one…

I had to apply to 25 schools last year in 4 counties and was admitted eventually in one with an ASD unit, however because the school is in a different county, they have a team of SLT and OT who will treat the children except for Conor as he is not from the county….

I really wanted to stress this out, so parents with newly diagnosed children know what is ahead of them, I don’t mean for them to be scared but to be prepared… Not only we have to deal with the everyday challenges of having a special needs child, but we also have to spend a lot of energy fighting for services… it is a long battle, but it also makes you stronger and a better person.

Having Conor has been wonderful, yes, painful, time consuming, challenging, and a long etcetera, but we also have a different outlook in live and appreciate life, friends and family every single day, we love each other more and are a very united family, yes, we might cry more than others, but we cry together and laugh together, Conor has made all of us better people and more appreciative of life and we love having him and would not change him for the world!

We have learnt that life can bring you unexpected challenges and you need to deal with them as best as you can, and not to be afraid to ask your loved ones for support.

We are also the voices of our children, and cannot give up fighting for services to try and help them now, so they can achieve their full potential in the future, do not give in and remain strong!

Also, if you just received a diagnosis we have now wonderful resources like the special needs parents association who can put you in touch with other people, I have found that the best therapy is to meet with others that understand exactly what you are going through, so please do not isolate yourselves, there are many of us who want to help and understand!!

Liam’s Story

A Fathers Perspective

Families come in all different shapes and sizes. When reflecting on our own situation at home it is difficult to avoid comparisons. In life we compare ourselves to others; our attitudes, our actions and ultimately our lives. We compare our children. We shouldn’t, but we do. This if often because we want to search for better ways to deal with our children or ask questions such as: ‘as a parent, am I to blame for his / hers behaviour?’ We may even make comparisons simply to feel comforted by the fact that we share similar parental experiences i.e. ‘problems’ or ‘issues’ with our children at some stage in their development. Every so often I encounter a family that I grow increasingly envious of. At first I am overwhelmed by their unity and love. A close-knit family complete with pearly white smiles, shiny hair, and kids who produce outstanding ‘A*’school reports- almost like the old Aqua-fresh toothpaste advertisement! They always eat their meals together and chat happily about their day. I will not pretend that there has not been an hour, day or even an extended period of time when I wished I had a ‘normal’ life. When I wished I was part of this ‘perfect’ equation. But we are surviving and thriving.
There are days when everything is unexpectedly delightful. The ‘up’ days! Days when our family situation puts thing into perspective and helps me appreciate what is important in life- and what is not. Ryan’s autism sometimes brings out the worst in people, but can also bring out the very best. I have made friends with people I would never otherwise have met. Writing this has proven an extremely difficult task.  I don’t like to admit how stressful or exhausting my wife and I feel because we have an autistic child.  Does anyone really understand? We have so much advice from the Professionals, but all too often I feel they are all too ‘text book’ and not enough understanding! Can one truly understand unless they are in our situation? Such perplexing questions never seem to go away.

Ryan was born on 01.01.01, a special date for a special child. As a baby, Ryan was very alert; his eyes would follow you around a room. At about seven months old, he would smile and laugh. In my opinion he was a perfectly normal child.

When Ryan got his 3:1 jab (for diphtheria, tetanus and whooping cough) he took a bad reaction. I remember going into his room that night and he was in his cot.  His temperature was sky high. He was burning up and became very sick that night. To this day, I am so confident that it was either this night or his MMR jab that gave Ryan Autism. I don’t think he was born like that.

When Ryan was three years old Caoimhe was born. As one can imagine we had grave concerns about his development. Nonetheless our doubts were always put down to the fact a new baby was in the family and this explained why Ryan’s development seemed delayed. His world was turned upside down by the new arrival.  Again we listened to the Professionals.

In April 2004 Arlene took Ryan to his cousin’s birthday party. Through observation she was suddenly alarmed by the fact that he failed to interact with the other children. He wandered round the room, content with his own company. Surely this was further evidence to suggest something was wrong?  But as a parent you don’t want to see any flaws with your children, you overlook the negatives and think of the positives. We found explanations which offered momentary comfort but our hearts where not content.

We took Ryan to the community Pediatrician and he was diagnosed with autism. This was an extremely heartrending and stressful time for us. I think it took well over a year to come to terms with it. Do parents actually come to terms with it?  We had many thoughts: the injustice of our child being Autistic, why us? Why not someone else? At first we only told close family members. We could not bring ourselves to tell anyone else. I often look back at our mindset and how this massive upheaval changed us. At the time I could never have contemplated discussing this with a stranger, let alone writing it to share with others! As more and more people learnt of our situation we received the usual religious sentiments: ‘You were chosen by God, ‘He sent you an angel’, ‘only special people are chosen’.  Everyone meant well but it did not help. Their words were meaningless. They fell on deaf ears.

It was very difficult to find an appropriate placement for Ryan. He was previously enrolled in a local playgroup. This was prior to his diagnosis. Unfortunately when we informed the playgroup of his autism they refused to take him. This happened with a few playgroups. Our frustrations grew. Finally we were able to secure a placement in a school in Buncrana. We were greatly impressed by their facilities and the whole classroom set up. This relieved a lot of our stress and anxiety. Ryan would be looked after and cared for according to his needs.

Ryan’s disorder affects the whole family. It takes a lot of preplanning, forward thinking, preparation and more importantly patience. Everything that ordinary families take for granted cannot be overlooked in our house. It takes careful planning of days out.  It is difficult when people visit our home and we cannot visit friends or relatives homes with small children or dogs. We cannot take Ryan to a Restaurant, the local bowling alley, sometimes even shopping. This is because he may become upset or could even try to hit small children. His behaviour can be unpredictable so we have set up mechanisms which prevent embarrassing situations or scenarios which cause Ryan stress.  People simply don’t understand.

Children with autism often show no fear or sense of danger. To get hold of a toy they will snatch it from a snarling dog, clamber up to a top shelf, jump from a great height, run across a busy road, etc. We try and make sure that every power point is covered, every fire is protected by a guard, and every room where there might be danger is kept locked.  Ryan can be very clumsy, he falls frequently. He trips over things and seems to have a lack of spatial awareness. He climbs competently on tables and windowsills. His muscle tone is low which has been confirmed by the Physiotherapist.  Ryan has no awareness of dangerous activities, constant supervision is vital.  We are always ‘on alert’.

Ryan will answer direct questions but may give learned or repetitive phrases. For example he answers the same thing to a question even though the actual events may be different at different times. Both immediate and delayed echolalia is evident. There is pronoun reversal, for example Ryan will say “Wanna lift you” when he means lift me up. If he is upset he will ask “Are you ok”.

Ryan doesn’t’t enjoy young age visitors to our home; he stays in his room or says “Bye bye” asking them to leave. He cannot handle babies or infants, especially girls as their high pitch screams upset him. Ryan has a tendency to play fight with his younger sister Caoimhe, and sometimes becomes too rough with her.  Caoimhe has developed her own way of interacting Ryan, it is evident she loves him very much. But he can hit out and hurt her at times. Ryan’s does not like dogs or small animals. He demands to be lifted if he comes into contact with one. Ryan’s curiosity is limited to his own interest and his pretend play is entirely repetitive. He jumps around. He flaps his hands, often at shoulder height and tiptoe walking is evident at times. Ryan has difficulties with Social communication, imagination and interaction with adults and age peers. He has some sensory integration problems.

I sometimes feel Ryan is going backwards not forwards as he picks up bad examples from his peers at school. I know that this happens to all children but it can be frustrating watching old habits came back such as hitting, nipping, kicking, biting and bedwetting. Whilst other parents watch their children progress and once they learn behaviour is inappropriate or no longer acceptable at each stage of development, we have to endure a roller-coaster of progress and then digress! Equally, one cannot try to explain the wonderful and unique feeling we have when we see Ryan sharing his chocolate or if he sees someone with a cut or bruise, he tries to get them a plaster. He is a loveable happy young boy.

Ryan has periods of a very unsettled sleep pattern when he will wake in the night for a couple of hours and be difficult to settle back to sleep as he has outbursts of laughing and hyperactivity. Most nights he sleeps in the sofa bed in our room.  Arlene and I find work the next day or even the next day’s normal activities very difficult following a lack of sleep. When Ryan is tired he becomes more hyper.  It is very difficult to watch him fight sleep. He cannot communicate to us how he feels and this is one of the most difficult barriers to accept.  As parents we feel helpless when he cries out in need. He cannot tell us what he wants, where it hurts or what he would like. For me, this is when I feel ineffective as a parent. A parent’s job is to help their child especially when they need it.  This is something Arlene and I had to come to terms with together.

Similar to other autistic children Ryan has an obsession. A topic which consumes all that he is and does! He is obsessed with Westlife.  He must always carry a Cd or DVD of his favourite band.  He also has action figures of each member of the band. If Ryan accidentally tears or rips a Cd cover, or loses an action figure he becomes extremely distressed. It can often take a long time in order for us to establish exactly what was lost or broken. Then we have to set about fixing or finding the item during which Ryan is inconsolable.

The greatest challenge for Arlene and I is the public. We are continuously faced with rude comments, glaring eyes and very uncomplimentary ‘tuts’ from people we come across when we take Ryan out.  Going to mass is particularly stressful. Ryan prays out loud and I feel everyone is watching us. We observe people openly shaking their heads with disgust, at what they think is a spoilt child who does not sit in silence like the other children. We see children in the street laughing at Ryan. Yet our child cannot defend himself from the whispers or blatant rudeness. As a parent maybe I am over sensitive to these incidences but they happen on a daily basis. I would love those casting judgment to spend a day in our lives.

 

Lara’s Story

I clearly remember the first time the word “Autism” was mentioned in relation to Tom. He had just turned 3 and we were at a private speech therapist because, despite what well meaning family and friends were saying, I knew in my heart that his speech wasn’t what it should be. Even so, when she diagnosed a severe speech delay I was really shocked and upset. But the real shocker was when she said that she worked with a lot of children with Autism and although she obviously wasn’t qualified to diagnose it, she felt that Tom should be assessed as he was showing some traits. I can honest say I went into shock because I don’t even remember the rest of the conversation. I don’t remember driving home or even telling my husband what she said. It wasn’t really until that night that it really sunk in, when I had a look at some of the websites she’d given me. Suddenly, all of the quirky things that make Tom Tom, all of the things I loved about him, were listed in front of me as symptoms of Autism. I went to pieces.

It felt like my little boys personality was being dissected in front of me and that he was just the sum of these symptoms listed on a computer screen. I also felt incredibly stupid – how could my child possibly have autism and I never knew?? I’d only recently commented to my husband that we would have to get his “funny little hand movements” on video before he stopped doing them, hand movements which I now knew was stimming.  I suppose, looking back, because I had no one to compare him to I’d just assumed that the tantrums he’d been having were the terrible twos or something to do with a new baby coming into the family . The time we had to leave a birthday party a few minutes after we arrived because he had a complete meltdown? Well, I put it down to him missing his nap and being cranky. There was always a simple explanation. So here I am confronted with the reality that Autism was a very real possibility. My only experience of autism was the film “Rainman” so the next thing I did was consult Dr Google to see what the future might hold. BIG MISTAKE! I wanted to know if my little boy had any hope of a normal life and the answer I got was grim – apparently the chances of him every speaking normally were very slim.  From that day forward we basically lurched from one day to the next, applying for services, applying for the Assessment of Need, never really knowing what we should be doing or when we should be doing it, until we finally ended up on the doorstep of Enable Ireland with no idea what to expect.

It’s only now that I realise how lucky we were to be in the catchment area of Enable Ireland Child Services because I’ve met so many parents with autistic children who haven’t been so lucky in securing services. He was assessed by a multi disciplinary team and was diagnosed with Aspergers Syndrome (a form of high functioning Autism) the day before his 4th Birthday. You would imagine the day we were given his diagnosis was one of the worst of our lives but to be honest it wasn’t. The team were very clever in that they dropped “Aspergers” into the conversation quite a bit over the preceding months so that we had basically become accustomed to it. We’d obviously researched it ourselves so by the time we were told for sure, I guess we already knew. The difficult time for me was actually the assessment itself. I suppose it’s because it highlighted very clearly the areas were Tom was having difficulties, and there were quite a lot of them. It was also very hard watching him look to me for help but not to be able to intervene. But I was consoled by the fact that it was a comprehensive assessment and that he would receive the help he needed, in the areas he needed, as a result of it.

Another difficulty at that time was dealing with family – it’s in their nature to try and make us feel better but it was very difficult to hear them say things like “don’t worry, there’s no way that child has autism” at a time when we were trying to get to grips with the fact that it was very likely he did. So in a way, the day we finally got his diagnosis was the day a lot (not all!) of those comments stopped. We told immediate family about the diagnosis but it was quite a while before we told anyone else. I think it was very important to have that time to ourselves to get used to it. I cried when I heard first heard someone talk about “Toms special needs” and found the whole new vocabulary upsetting. I wanted someone to tell me about the therapies he was receiving – I’d no idea what occupational therapy was for. I didn’t know what a child psychologist did. I wanted to speak to someone who understood. So I made it my business to find support groups, both locally and online and they have been a lifesaver for us.

By the time Tom was diagnosed he was nearing the end of his time in Naionra, which is a nursery school for children intending on entering a Gaelscoil. Obviously when he was diagnosed with a severe speech delay earlier that year, we were very worried about his speech so we put his name down for the local English speaking school. However by the time he was diagnosed he was scoring just below normal in regards to speech. It was a difficult decision to proceed with the Gaelscoil – his speech therapist was against it but his teachers said his level of Irish was as good as anyone else in the class. After much soul searching we decided to try the Gaelscoil, while deferring his place in the English school for a year just in case. He started that September with a part time SNA and I’m very happy to say he has flourished since that day. Academically he is around a year ahead of what he should be and they are very supportive of his other needs. They have been severely affected by the recent caps to SNAs like many other schools (Tom was the first of many special needs students) but they cope as best they can. They now have a Sensory Room where he can go to calm down when the classroom environment gets too much for him to cope with. His classmates accept him wholeheartedly and view his stimming as just something Tom does. His teachers say that he being there has brought out a caring and nurturing side to the other children that wouldn’t always be noticed otherwise.

We are still in the early stages of our journey as special needs parents and we’ve a long road ahead. According to the literature it’s going to be a rocky road, made rockier by the fact that as Tom turned six he could no longer be seen by Enable Ireland child services so we are on long waiting lists for therapies with the HSE. But the biggest lesson I’ve learned is to concentrate on the present and forget the future for now because Tom refuses to be defined by a diagnosis, by a book, website or indeed Dr Google. Not only has he gotten to grips with the English language but he’s on the way to mastering a second language too. It didn’t take me long to realise that his quirkiness was still one of his greatest assets and that he was still the same comical little fellow he was before we first hear the “A” word. I’ve learned that no one has all the answers – I certainly don’t. We still don’t know what tomorrow will bring but we know that whatever it is we’ll muddle through.

 

Suzanne’s Story

I had a very easy pregnancy (no issues) and a very good birth (no major issues there). The same day as giving birth, a paediatrician came in and started examining my daughter Sophie. He then pronounced that he suspected she had Down syndrome.

I am 28 and this was my first child. I was not expecting to have a child with Down syndrome. I always thought that this was an ‘older mums’ scenario. Sophie has Mosaic Down Syndrome – this is where not all the cells have the extra chromosome- in her case the extra chromosome occurred after conception (so basically the egg and sperm were fine). There is a misconception that Down syndrome is caused by older parents’ genetics – this is not the case as proven by my beautiful little girl.

She was doing great developmentally until about 8/9 months and then stopped progressing as much. This coincided with teething and other issues so we attributed it to that. However than we noticed she was having seizures. Turns out she had Infantile Spasms – a rare form of Epilepsy. The seizures were very slight and looked like startles. However the regression was not so slight and soon she was barely smiling and just lying there. She was also very tired all the time. Thankfully, thanks to the great team in Temple Street, she is now seizure free and developing again.

I often wonder why my beautiful little girl had to go through all that pain and has to have medication when other little girls her age don’t, but I keep telling myself it will make her stronger in the long run.

I have met so many truly wonderful people because of my daughter’s diagnosis and I have learned that one key thing to do when you have child with special needs, it is to get into a support group.

 

If you feel that your story would be of benefit to share with other parents, please email info@specialneedsparents.ie

 

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