Parenting in my Shoes – My child has Autism

Lenore ,who is married to Ian and lives in Cork, is a mum to six children. She is currently a stay at home parent but describes herself as a “Jack of all trades” in her younger days,having previously worked in childminding, sales, marketing, run her own business and built up a successful Facebook page – amongst other roles.

Two miscarriages and a work-life balance that saw Lenore working excessively hard for very little return resulted in her making the decision to stay at home full time with her children. Ian supported her decision completely and Lenore says it turned out to be the correct decision due the unexpected turn family life took..

Realising something was “different”…

I think as weird as it sounds, I was anticipating something when pregnant, I remember being very upset and not being able to put my finger on it. Bodhi had hearing loss from birth which was detected within 24 hours of him being born and he was also admitted to the neo-natal unit with suspected sepsis and basically whipped from me in the ward which was very upsetting. At the time I thought that was what my instinct of being upset was about – and maybe it was.

Up until the age of 12 months he was back and forth regarding his hearing to various departments and he had recurring ear infections. He reached all his developmental milestones and was a very happy baby. Around the 12 month mark I mentioned to the GP that he was twirling his hands when sitting in the high chair but she passed it off and I thought no more of it.

At 18 months he begin hitting his head and screaming, which I again brought up with the GP, but as we were still not sure what was going on with the hearing loss, we just presumed he was frustrated with regards to not being able to hear properly. We had a bit of a fight with regards to opinions on what to do with his hearing up until the age of 2 and a half. It was after seeing a ENT consultant for a second opinion when Bodhi was 2 that he also suggested something else may be at play. He had an operation at the same time, the effects of the general anaesthetic affected his sleep for six months after and he just screamed constantly.

We were at our wits end with nowhere to turn. Around this time, when Bodhi was 2yrs and 7 months old, we brought him for a private assessment in Dungarvan and the psychologist, Laura Regan Morrissey, diagnosed autism and sensory processing disorder. 

Suspecting autism…

When we suspected autism we reached out to SHINE autism centre in Carrigaline who were a huge support, Kieran Kennedy called to our home and we found out more information in that one hour with him than in the two years previous. He suggested things for us to be doing, who to go to for an assessment, what to apply for in terms of schools and allowances. He advised us of our rights which we had no clue of and we spent the next few weeks in a haze but got the appointment with Laura fairly quickly.

By having this assessment done it gave us access to getting home tuition for Bodhi which was the beginning of his amazing journey. Unfortunately at the time we didn’t realise that a private assessment did not gain us access to school waiting lists or placements and we still had to wait for our HSE assessment in order to gain access to schools.

Waiting for HSE assessment…

We were very lucky as a human rights and civil law solicitor based in Dublin, Gareth Noble, reached out and lobbied on Bodhi’s behalf. At the time he had taken the HSE to the high court regarding the delays in their assessments for other families. We had also just been refused two school places at the time based on having the wrong report so Gareth fought with us and he sent a warning shot, so to speak, to the HSE in the April 2017 and gave them a date as to when the assessment was to be carried out.

The assessment was done and the report was in our hands by the end of May 2017 at which time we had missed the deadline for school placements but we were blessed in being able to attend SHINE, not without a fight mind you as the SENO at the time wanted Bodhi to attend an early learning unit in the city and travel by cab each day. This is the same child who would at the time vomit if I left the room due to anxiety and to this day will get very upset if I get out of the car and walk around to put petrol in or wake in the middle of the night and be frantic if I am not present.

I had to fight to not accept this place as it wasn’t suitable to his needs but it was a hard battle. I think though it prepared me for the many more battles that were to come and that still keep coming!

My feelings upon diagnosis…

Heartbroken and relieved if that makes sense. Heartbroken as we were completely ignorant to the idea of autism, we had a perception of the idea of it in our minds from media, films and the typical stigma of what you think it will be like.

Relieved because now I knew what we were dealing with I could throw all I had into getting what he needed done. I will take a day or two to be very upset or angry and wallow in it. Then I say, right I have a choice here to get bitter or busy and I get busy, so that’s what I do.

I think Ian struggled a bit more as Bodhi is the only son and I guess you have expectations of what you will do with your son and it hit him hard at the time, that this may not necessarily be the case, that Bodhi may not play rugby or want to go to matches and its a hard pill to swallow. If you asked Ian now though he wouldn’t even bat an eyelid at it, he says it is what it is, they just make their own things to do as a duo now and follow their own rules. He says we will deal with whatever head on and he is right, our motto is “just keep swimming”.
Lenore and Bodhi

Awaiting state supports…

We haven’t been offered any supports yet. There was one meeting we were invited to which was an introduction about living with autism that we could ask our family to attend also  -  both of our parents and my sister went too.

It was down to us to determine what we would throw money at therapy wise to help Bodhi progress. It`s very hit and miss as therapies cost a lot of money and you don’t want to be spending money on things that won`t work, then how long do you stick at it to decide to continue or give up. Where do you draw the line?

It was only when Bodhi started Sonas Junior school for Autism this year that we have been able to access supports that are provided within the school. So since September alone there have been maybe five information meetings by the Speech and Language Therapist in the school and a possibility of attending a course that I have been trying to get on for almost 3 years now.

Our support network…

The biggest supports have been people like our families, our parents and sisters who all live locally and help out if they can. They all work so they don’t mind the kids regularly or anything like that but can fall in when it`s an emergency which is great. My friend Aileen who calls regularly to see the kids and have an actual conversation with me. People like Alma in SHINE centre for autism, the home tutor we had for Bodhi, Elaine. Bodhi’s teacher Eimear, Valerie of Tony the Turtle, Sharon of Autism Radio.

Other parents have been a lifeline in a very isolated and lonely world, they are the ones who get it and also offer hope as they may have a child a year or two ahead of you so you look to them to see the possibility of what could come in time. I have friends who have blogs and I have friends who are just parents and I tend to turn to each of them for different things. I find that groups and pages can be a curse and a blessing, you are already stretched to the max energy wise and are drained in general so I have to put a bit of distance between negativity and myself or I will feel worse and it’s just not good for my own mental health. My take is, I do things through humour and wit and if I get mad or upset, I blow a gasket and get on with it and it’s over with. I cant sit in it or be scrolling through things that make me feel worse, I had to do a serious declutter of accounts I was following for this reason. You need to get selective of who you allow into your space and who you give your very limited time to.

The impact of Bodhi’s diagnosis on the rest of the family…

I would say from the age of 2 to 3 it was pretty full on and we couldn’t see the wood for the trees. He was very frustrated, there was no speech and a lot of screaming, couple this with a newborn at the time and Bodhi not sleeping and it was a very tense environment for a while. Oh and the guilt, the guilt that comes with not dedicating time to your other children and you are very conscious of every thing you do not effecting them or having them resent their brother, if that makes sense.

He is now four and things are very different, he has some words, he can communicate with us, he tends to gravitate towards the different five sisters for whatever he needs at the time. He is quite the Don Juan. He can be found in the middle of a group of teenagers now and has no issue introducing himself to a group of Spanish female students or a leggy blonde in the ATM queue.

I think his diagnosis has opened all of our eyes in a positive manner, the kids are more aware of others with special needs, we are all way more accepting and in turn it has introduced their peers to autism and what it entails. When you come to my house you could be faced with a child who is giving you a hug, one who refuses to wear clothes or someone who has fired something that has just missed your head by half an inch. It certainly keeps the family home on its toes anyway. We all have become much better at understanding cues and reading into triggers which may upset him or cause a meltdown. We know what to do which helps him calm down and now that he can use a prompt such as “I want…..” it helps reduce the screaming a lot.

I think it was harder for our parents too as this was their first time dealing with autism, its tough, you cant just have a birthday party, you cant just have people call to your house unannounced, you cant just buy him a toy for Christmas, he doesn’t understand who Santa is, he has no clue what presents are, if you have a cake with candles he assumes its his birthday and doesn’t understand we all have birthdays! Bodhi has a huge issue with eating and anxiety and is waiting to see a psychologist regarding this matter so it’s very hard to bite your tongue when someone makes a remark like “he will eat when he is hungry” or keep on and on at him asking him “do you want some chicken? do you want a banana? do you want an apple?” it’s like for the love of Christ would you stop, we have a limited list of what he will eat stop asking him!!!! We have a routine for him and if you go off course it throws our day into chaos long after those who have called have gone.

The impact on me…

I would like to think that it has made me a better parent. I am definitely the one who understands him the most and who can read a situation in a few seconds and can determine whether its a good or bad idea. It is very hard at times, to be a different parent to six children who all have completely different needs. I find I can be so tired and drained from having to fight for every bloody thing for Bodhi and the kids in general that I can be wiped out and a bit snappy or just maybe not having as much energy as I want to be able to do things individually with them but it is something I am trying to make more of a conscious effort with. Some days you would literally need to divide yourself into seven to keep them all happy, husband included!!

It`s tough to not just be able to get up some days and say we will go for a spin, or we will go for a meal, the cinema, to a family event – these are just things we cant do altogether and that I find really hard. Routine is paramount with Bodhi and if something is on that the girls want to go to it will be either Ian or I will go with them and the other will stay home with Bodhi and the smallies.

I always say I look forward to the day we can have a holiday together and then I think “sure my eldest will be 18 in two years, the time has just gone”, so maybe the reality is we may never have a family holiday together and that makes me quite upset then. I have to try and take things day by day and some days hour by hour. I lost my cousin and best friend in June, six days after the birth of my youngest, two weeks after that we moved house that we had spent the previous six months renovating, so I am trying to deal with a lot and not crack, trying to get out of the house each day for a 40 minute break is what is needed recently! That and a lotto win for a holiday and a stress free Christmas and the money for private assessments for the three in the family who are waiting, at €1400 a pop!!!

When Ian is off he lets me sleep in though, those mornings are what gets me through a lot of days when its all a bit too much, I am a night owl, I do all my thinking and writing at night, its not unusual for me to be at it still at 2am as I find the dead of night the most peaceful time to do my thing. Ian could sleep on a clothesline then and can be asleep in 30 seconds where as it takes me about 45 stretches, 32 pillow turn overs, room at a certain temperature, lights off and a human sacrifice to the Gods to get to sleep. If someone cries or moves then its me that is suddenly sitting straight up wondering what the noise was where as a marching band can walk through the room and Ian wont even hear them. So I find I need my sleep then in the mornings and am a cranky bitch where as Ian is full of the joys of Spring, another reason why he is the yin to my yang haha

My fears for the future…

I think that whatever I put energy into will come into fruition so I don’t like to look at it as fears really. I want to focus on him being the best that he can be, we always want to ensure that he can live independently and you do wonder what will happen when you are gone, who will look after him, will it fall to one of the girls? or then again the rate he is going he could be the one looking after all of them. He never ceases to amaze me!!!

And my hopes…

That things change in Ireland – the system, the wait list for assessment and services, the lack of school places, the disregard for our children in general and the way that they aren’t a priority. I hope that this all changes and we are the generation of parents who get off our asses and do something about it on their behalf and we achieve something for them and the kids with autism who follow.

I just want Bodhi and all of my children to be happy and healthy, anything else is a bonus. I can`t wait for the day where we he and I have full blown conversations and we can have some adventures as a family which I know will come in time. 

The most frustrating things…

The delay and lack of services, support and help. The lack of school places and the way you are completely disregarded. I was completely oblivious to autism. I always say it’s very similar to Harry Potter, you suddenly are part of this whole new world you never knew existed, Hogwarts is suddenly real, you are a wizard, you are now aware of other wizards, there is a secret nod in salute when your people see and recognise what you are going through, we have all the muggles who are totally unaware of our world.

The ministry of magic is the HSE, you cant figure out if it`s there to help or hindrance your journey and the dementors are the assholes in Government who take the pay rises and benefits while sucking the life out of the rest of us.

We know the money is there, we know that they can spend money on absolute ridiculous events like the Pope`s visit, or when Prince Charles and Camilla came to Ireland. Yet you are trying to tell me we have no money for hiring people to tackle the assessment lists which parents are now waiting three years on to be seen. That they cant hire psychologists and therapists to provide the services that families are now waiting up to five years to even get called for. They promise 20,000 SNA placements but fail to mention the bells and whistles attached to this and that they are all imaginary positions it seems. 

How they can pull money out to build new schools but its a problem to fund a unit. Our kids are treated like a hindrance and are being denied their basic human rights to an education and that is what really pisses me off and gets on my wick when you can see that those in the position of power don’t give a shit, they are just biding their time to cash in on their pension. 

I also notice that there is also a lot of negativity being focused out of mere frustration in the wrong direction or targeted at the wrong people entirely. The parents are getting stuck in one another over things and there is a cliquey mentality that I just cant be dealing with, you either take me or leave me, you know I will do anything to help anyone but I stay in my own lane and am focused at the task at hand. People will criticise you as your child isn’t autistic enough, because he looks cute and autism isn’t cute for everyone, they will be pissed off at you for doing something and pissed off at you for not, you cant win and I find that kind of bitchiness within the same circle of trying to all achieve the same thing very frustrating. 

And now my toddler is showing signs…

We were told in Sept/Oct that she would be seen by the Area Medical Officer (who basically meets with us to determine whether an assessment needs to be done, so its not even an assessment, more bloody red tape) within six weeks. Now apparently they are busy with HPV vaccinations and it wont be until Jan/Feb that they can now see her. She is on the assessment of needs list which is basically a three year wait and we have applied for Early Intervention.

Our other alternative is contact the solicitor we used for Bodhi, which I have and also make an appointment for her to be assessed privately which we have to do as I cant sit around and wait for someone to help us, the reality of it is, they wont and Indie will be the one who suffers. I have seen what can be done between the crucial years of 2 to 4 with Bodhi and I am going to push that we do the same with Indie and I wont accept anything less. I have done this dance before so I know what to expect now. A private multi disciplinary assessment can cost anything between €1200-1400 and the next appointment available is not until March as the team that carries out these reports are only allowed do one a month. Again more red tape and horse shit within the system but that is where we are at right now. I am in contact with our case officer and she is aware of our circumstances and has assured me she will do all she can to help.

My other children…

I have two others waiting on assessment of needs 18 months now for anxiety and sensory issues, which are also a pre-cursor under the ASD spectrum. I have learned so much in the last two years but basically girls in general present differently to boys and they would not have the typical traits, they would not necessarily have the developmental delay or speech delay. Their concerns or red flags normally would only be raised in school as the issues start to manifest in social settings and girls are the best at masking and acting a certain way in school and completely differently at home. Similar to holding a bottle of coke in your pocket all day and then arriving home and opening it and running for cover.

I also have a child waiting on CAMHS for two years and has very bad panic attacks, anxiety and depression. CAMHS tell you then if you are “that worried” take your child to A&E. The supports in this country are the absolute pits.

Their support…

We did some sessions of art therapy and counselling which I personally found to be very hit and miss. Its very much a case of having good and bad weeks and having to go with the flow. I know and see the triggers and it is down to me to be their safe place and as long as they keep opening up and talking to me then we are good and things can be sorted. We can always sort things, one breath at a time and one day at a time.  In the meantime I keep lobbying on their behalf to get what they need, the irony of it is if you don’t apply within the system if they needed any supports down the line in school they would have to start from the bottom all over again where as if they are in the system the hope would be the help would be there quicker. You would think……

How I cope…

My blog, my writing I find it very therapeutic and a release and I feel there is a bit of mutual healing going on, I get it through writing and releasing and someone else gets it from reading and realising there is someone else out there in the same boat. Other people liking my posts and supporting my blog helps pull me through too as it acknowledges that I may be doing something good and on the right path for me. At times the Evening Echo will ask me to write a piece, Mummypages, The Sun or may pick up bits and recently someone in TV reached out to talk to me, so I literally have no idea what I am doing but I am trying to wing it, whether it`s being a mom to six, writing, autism, being a wife, a friend, a daughter, a sister, an advocate, I am winging the lot!!

Ian and I like to have nights where we stay up until 5 or 6am having a few drinks and putting the world to right and those nights help us both cope considerably, although the hangovers don’t help me cope at all at all!!! Getting too old for the recovery period one night out now entails!

The single thing that wold make my life easier…

Money. As stupid as it sounds, it would take the edge off considerably, Ian could be home full time too helping me with the kids, although that novelty would wear off after a few weeks and he would be hoovering the deck outside!!

Money would help get us access to the assessments we need, the therapies all the kids require which we have to pick and choose over who gets what which is a terrible place to be in at times. The mortgage and the bills are taken care of, we could even get one car we can all actually travel together in as one family, oh and a family holiday, we have a communion coming up, have lots to do in terms of renovation still, would love to try and fundraise money to get an autism assistance dog for the kids as we live near the beach and I always am on edge in terms of safety. We always have a birthday or event coming up and I am trying to pull it together money wise what to do for who and Christmas is no different now, you feel you are robbing Peter to pay Paul yet Ian works his ass off and takes every hour going and can sometimes do 6 x 12 hour shifts in one go, he literally works every hour going to pay the bills and make sure we are all taken care of and you know it is what it is, we are very lucky and we wouldn’t change our lives for the world but sometimes it would be nice to have a bit of money there to be able to just go shopping on a whim or pay someone to mind six kids so you can get a weekend away, go get your hair done, do a food shop without budgeting, simple things!!

My advice to other parents…

Reach out to other parents, find blogs, support groups that are local to you, don’t isolate yourself, educate yourself, don’t get bogged down in information, follow your child’s lead and your intuition, don’t be afraid to challenge professionals as nine times out of ten they are acting from a manual they have been taught from and aren’t living with autism 24/7, don’t be afraid to speak your mind and out for your child, you may be the only one who will. Be selective about who you follow and what you read, make time for yourself and always have hope. The reason I set my blog up was simply for this reason alone, I had no one to turn to, I wanted to document our journey and milestones so people could see the progress and that there is hope. I also wanted to do it through humour, wit and in a warts and all kind of way. At the end of the day autism isn’t the problem, the lack of services and supports out there are!!

Maybe that if anyone knows any one who is facing an autism diagnosis to send them my way, I am not saying I know all the answers but I can certainly point them in the direction of who can. That is what its all about lending a hand to those who are coming up behind you so they in turn can do the same. If others in power wont help us then we have to help ourselves!