D Day

For those of you who don’t know, I am a mother to six children and my only son Bodhi, 5, was diagnosed with autism in 2016 when he was 2yrs and 7 months old.

13435381_10154411505189714_5082585885676398183_n

I coasted through life up until then with three daughters and a baby boy who I was super protective of. I think this Mama Bear persona kicked in for him when he was less than 24 hours old and whipped off me on the mother and baby ward and rushed down to neo natal with suspected sepsis. I was inconsolable with worry, it just goes to show that even though this was my fourth child, this feeling of helplessness and worry was oh so new. He fed every two hours in the unit and as I was feeding him on demand, the nurse would come in and wake me, I would plod down there in the still of the night and feed him, wind him and put him back. I would then retreat back up to the 3rd floor and fall into the bed and repeat. By the time 9am rolled around my legs were after swelling to about five times their normal size but I was running on a whole different type of energy.

My son. My son.

10295456_10152468152944714_6273406406728839246_o

He then failed the newborn hearing test and within the first few months of his life we were told he had hearing loss on his left side. It was apparent from the get go that our little man had some odds stacked against him but we were determined that whatever we were dealt with we would handle it. When we met the ENT team and they said he needed a hearing aid, I was all for it, if that is what he needed then that is what we would do. Ian’s face was crestfallen as I told him, this was our only son, he had dreams and images in his head about him playing schools Munster rugby as he did, now he was seeing all these images of him not ever playing rugby or maybe being mocked for having a disability flashing before him. I didn’t have time to be dwelling on this type of thing I was running on the getting pro active energy, I had my game face on and whatever he needed, I was adamant we would get for him.

10679697_10152763238059714_7747996629328600654_o

It was within the first two years of his life and second, third and fourth opinions from various ENTs and Paediatric Audiologists that we realised something else was going on. We initially thought the speech delay was down to the fact that he couldn’t hear, how could you repeat words if you couldn’t hear them in the first place? We thought that the meltdowns of the radio being on, the telly being on, two or three people having a conversation and maybe a toy going, was down to the fact that he couldn’t zone in on what he was supposed to be hearing, when in hindsight it was a complete sensory overload and he was letting us know he couldn’t cope.

17760964_282141185547262_4546098880662284453_o

We thought that the screaming was because he was in pain and couldn’t let us know what was wrong, when in fact it was from frustration at not being understood. I had flagged my concerns with our GP at the time before he was 12 months old I noticed he did some hand twirling and clicking of his ankles (as if you were waving with the sole of your foot), but the GP assured me that it was all normal. Then at the age of 18 months he started hitting his head when he was very frustrated and again I was told it was nothing to be concerned about. At the same time we had no answers about his hearing or what was to happen so we presumed what was going on all boiled down to that.

17760794_282141262213921_4483664600339955105_o

It was a visit to an ENT who mentioned I may want to see if “something else” was going on that I self referred him for speech language therapy. We were lucky enough to be seen quickly  at the time and the therapist there could not call it, he was displaying some signs of autism but yet his eye contact was good. I was living on my nerves at the time, as his reactions to things were so unexpected that I did not know how to help him and I’m not going to lie, I felt like I was failing him, the thoughts of bringing him outside of the home where his routine was interrupted was my idea of hell and it was something I avoided if I could. I will always remember constantly being armed with chickatees and his bottle, making sure my phone was charged as those were the things that helped keep him calm. In every session with that therapist he was obsessed with the vertical blinds, he would just constantly play with them and ignore what was being asked. He fired toys and I was always asking her to make sure that they were away or out of reach before we came in. I was glad for the most part that she witnessed Bodhi as I did at times at home and someone besides Ian was now seeing what we were. She suggested I apply for Assessment of Need and Early Intervention and the rest as they say is history.

1947893_10154156174494714_5465597699514302415_n

We had a newborn baby, Indie, to contend with in the midst of his diagnosis and the peak of the issues. Bodhi wasn’t sleeping and it was like a form of torture, Indie was feeding on demand and we had a two year old screaming and not sleeping. A phase I thought would last forever and after six months, it seemed like it did.

14264912_10154659313044714_7990620987828090379_n

Bodhi was diagnosed privately in December 2016, I will never forget, it was ten days before Christmas we had to pull €500 out of our ass, we drove down after about one hours sleep to Dungarvan and Bodhi got about 45 minutes sleep in the car. I remember thinking he needed it as I thought that she would not get a good representation of him at the appointment as he would be so sleep deprived and scream for the duration. He entertained the psychologist for about 40 minutes and then had enough, I nearly died as in slow motion he fired a toy and missed her head by about half an inch.

bodhi 2

Hearing the word autism was bitter sweet, we now knew what was going on and could go about helping him but we didn’t know the first thing about autism.

Or so we thought.

Many of you will know from personal experience or from headlines and your newsfeed recently that in Ireland there are no services or supports when you receive a diagnosis. The family is left to get on with things and figure it out for themselves.

We had no clue where to start, we got some great advice from Shine centre for Autism in Carrigaline, Co. Cork and we also met some parents who were a huge source of information and hope as some of them were a year or two ahead of us.

38474505_10157168280774714_1274381139628261376_n

The way the system works in Ireland is that you need a report from the public health system (HSE) to state that your child has a diagnosis. However the wait list in order to meet a team to carry out this assessment can be years long, so parents hands are tied as they need to try and access some therapies and are looking for answers as their child needs help NOW.

Some schools were only accepting reports from the HSE, yet parents had reports from private psychologists. It was a bone of contention to say the least. You nearly needed a degree alone just to navigate the system.

24993113_10156404657619714_4016582279073960294_n

Through a solicitor we were able to get Bodhi assessed publicly and this assessment was carried out in our home. At the time Bodhi’s anxiety levels were through the roof and we had an unbelievable home tutor which he had built a great rapport with. The team decided that a better assessment would be made in his home environment to get a greater understanding of what his needs were. It was on this day in May 2017 just after this third birthday that the professionals in my home also suggested that I should apply for an Assessment of Need for two of my other children as some red flags were apparent at the time. This had also been noted to me by the school three months earlier. At the time I felt like I was getting the shit kicked of me no matter what way I turned, I felt like the biggest failure of a parent and we both were very upset as we didn’t understand what we had done wrong or what was going on and why it was all coming together.

I was a little taken aback at their suggestion to be honest as my idea of autism or additional needs were all of what Bodhi displayed, the obvious traits, the speech delay, screaming, self harming, echolalia, hyperlexia, sensory issues, repetitive behaviours and so on, as he was my only son I naively assumed some traits were just typical boy behaviour and I did put a lot down to that.

30412394_425425907885455_1818340438804525019_n

I was a mother to four other daughters at the time of his diagnosis and girls were what I knew and were used to.

It was being left to our own devices and told, this is what he needs but there have not been any services available in your area since 2015, is initially what prompted me to read a lot, immerse myself with information, talk to parents and consult professionals I respected. I learned to take the bits that applied to us and stored it in my memory bank as I went along.

I had been working and self employed up until Bodhi was 18 months, I was juggling running a business, a website and a few social media platforms with being a Mom to four children and trying to split my time working when Ian was off so we could split the childcare between us. This meant we were like ships passing in the night and there were days when I had to take Bodhi to the shop with me. Coincidentally around the same time I suffered the loss of two babies and it was the reality check I needed that something had to give. My body could not cope as I was under way too much pressure physically, emotionally and mentally. The stars had aligned as Bodhi’s needs had become more obvious so Ian and I decided it was best I gave up work and stayed at home with the kids as they needed me and I retreated back to family.

It was tough for me to not be financially independent any more, as a woman you will always beat yourself up about what you could have done or should have done. When you are working, should you be home and when you are home, you feel you aren’t contributing enough financially, it is a constant battle of wills.

I had hit a pretty low time in my life and this combined with the diagnosis it was like I was struggling to come up for air.

11238266_10153517473034714_5796427568423994835_n

It was maybe a year after that I set up the blog, it was my outlet, something I could do for me. I had no real goal in mind only to maybe log our autism journey and the chaos of having a large family. We live our lives through wit and humour and people who knew me used to always say I should write a book or record moments I used to share. Here I felt I was getting the best of both worlds, I could show people the real me, fucks and all and yet I could also educate people about autism and try and destigmatize it.

The irony.

So now having two more children waiting on assessments and things being a little different to Bodhi’s situation I found information I came across very interesting in relation to girls. I didn’t realise that girls were being diagnosed two years later than boys, that boys behaviours can tend to be physical but girls internalise things so two things in particular which will rear their head are anxiety and social issues. Two things which often materialise at a school going age when they are older.

17424863_276365789458135_8158506921098597482_n

I was finding it hard at the time as one child in particular I was recognising as a complete carbon copy of me as a child. The anxiety, the thoughts, the mannerisms, the interests, it was like I was looking at myself all over again and funnily enough sometimes I felt that they were the one I felt hardest to parent even though I identified completely with what they were going through.

I had a niggling thought in the back of my head that if professionals are recognising what she is going through as traits and we are two peas in a pod then I need to do a bit more digging on this.

11666220_10153521615249714_1220578145540404827_n

It was then of course that we had a lot going on, we bought a house, we had to renovate it, I was pregnant on Marlowe and I was trying to get Bodhi a school place and time was just flying by. I lost my cousin six days after Marlowe was born in June 2018, we had moved house two weeks later and I was finding things difficult to deal with day to day.

Then we realised that Indie, shortly after her 2nd birthday that August, was displaying traits for autism and I think this was when the roles flipped, I was crestfallen, Ian was telling me whatever will come we will deal with it but it was just like one fucking thing after the other. It wasn’t the autism it was just the constant barrage of shit we were being dealt with. I also felt like I had taken my foot off the gas a bit and was a bit too complacent thinking up until her 2nd birthday we didn’t see anything significant. It was like a light switch went off then out of nowhere, she went from a child who slept ten to twelve hours to not sleeping at all. Being up wired to the moon, doing laps of her room, tearing up books, emptying the wardrobe, sleeping everywhere but in the bed or the cot. She was lining things up, was suddenly having sensory issues with washing and noise, the meltdowns soon followed and the speech never came.

40841362_10157257605794714_1430030853219549184_n

I didn’t fuck around when it came to waiting, as we also had the two other children still waiting almost two years now for an Assessment of Need I contacted the solicitor we used in 2016 to take on the three girls for us. I was exhausted, I needed help and I needed to conserve my energy for the fight to come.

I now had four children who had gone through this process and five children waiting on services. The system had failed our family massively and it really riled me. Every which way I turned there was an issue or a problem, nothing was straight forward and each time you felt you had gotten over a hurdle, some asshole ran and placed another 42 in front of you for something else.

37528061_10157118669834714_6639030871288446976_n

The blog was taking off, I started doing insta-stories and putting myself out there a bit more. I think my cousins death spurred me on to do this as I realised life is too short and grab the opportunity while you can as I may be the only link someone has to autism. I did some articles in the paper, wrote for Mummypages, was asked to do a takeover, did some radio interviews and I couldn’t quite get my head around as to why this was happening, what purpose it served and where the fuck it was going to lead to.

To be quite honest, the support from the online community and parents online on the blog and other ASD parents I have met and built friendships with that have helped pull me through. In the real world I am looked upon as a bit of a pariah, some people ask me why I chose to put Bodhi and Indie out there, why would I want people knowing that they have autism.

What if they don’t want people to know?

I get it.

38676790_10157168280444714_5609365032472150016_n

I always will respect YOUR choice as a parent to YOUR child about why you do or don’t want that information out there.

Your family, your rules.

Just because I have a blog does not mean that you don’t get to respect my choices too.

My family, my rules.

43225983_10157349059929714_2059246220668305408_o

I am very conscious of not speaking about my older girls as I think that their age and the fact that their friends or people we may know follow me are huge factors to take into consideration.

I think it is their choice to speak about what they want when they want and anything I do post I always run by them first. The irony being they get quite odd when I don’t mention them now and I get the odd request about putting things up.

Secondly, in respect to Bodhi and Indie, they will always know that I shared our journey and their milestones out of love, it was never from anything other than love. When they realise the amount of people that have messaged me to let me know by sharing our journey it helped them on theirs, then I know that they will have no issue whatsoever in what I share or why I “put them out there”.

44800680_10157415670259714_2260973958318784512_n

Lets be frank, the main person I have put out there is myself, front and fucking centre. I was always meant to stay behind the screen and the posts. I never anticipated I would be talking into my phone or that the blog would be a hit. I was just rolling with it as it is my saving grace and my therapy and I think its amazing that things I share other parents can also relate to and it helps us both go about our day in a much more positive light. There is no better feeling than knowing someone understands and that you aren’t alone as this journey can be very isolating.

When at home with little adult interaction, you use your phone to feel a bit less Shirley Valentine “Hello Wall”, one day in particular I was sitting down and I came across this post about autistic traits in women and as I read it my heart rate started to race. I was having a “Holy Shit” moment, mentally relating to almost everything that this person had wrote. The reality dawned on me then that the reason I was struggling a lot of the time and could relate to what was going on in the house was because I was autistic too.

11009917_10153366304804714_1489720389271046740_n

The realisation was actually very liberating and it made a lot of sense to me.

I hated people in my personal space unless I invited them, I cant stand when someone asks me for a hug, unless I initiate it.

I get really annoyed when someone calls unannounced to the house unless I am mentally prepared for the energy of having to hold a conversation.

It is a huge deal to me to have a few things on in the calendar in one week.

I can easily not leave the house for a few days if I don’t have to, I am absolutely exhausted from going out and about socially and having to talk, especially when it comes to making small talk. When I am drained from being out and about I feel like a phone battery on 3% and I just need a bit of time to recharge to get me to at least 85% to deal with what is going on and converse again, but then at home someone is in my face or being loud and over the top when I’m not even at 10% I want to choke the living shit out of them. When my battery is low I get very quiet and when people start pecking at me trying to find out why, I get annoyed and suddenly there’s an argument but over nothing, its just that I cant explain how I feel so they understand I just do not want to speak, not to them but just talk in general, I need some charging time!

9yrs

As a child I had huge anxiety, it would be my worst nightmare having to ask someone a question, order food, I couldn’t queue in a shop on my own, I had to make sure I had all my money counted exactly before I paid for something, I was an avid reader, crowds made me very nervous, I always feared I would get lost, I remember vividly my mother asking me if I wanted to go and see Michael Jackson in concert in Pairc Ui Caomih and I said no as the thought of the crowd terrified me. So my first concert was in the much smaller venue of Neptune where I went to see BB King with them. 

I was a home bird, I liked the safety of my family and what and who I knew best. I would have always felt like I was acting in any given social situation except with my own family and those very close to me.

10398373_136895279713_7191483_n

If I saw a film I liked I would obsess over it down to the directors nieces dogs name but if someone asked me if I wanted to meet them, Id have probably said no. I was anal about my belongings and if someone took something or ruined it, that was it, they were dead to me.

I still remember my sister drawing all over my Smash Hits Autograph Book I got one year, I’m fucking traumatised still, yet she cant remember as I’m sure she was probably four when she did it.

47191_465896659713_2056979_n

I was very well behaved in school, I never caused any trouble and to be honest I tried massively every day to just do my work and try and figure out the social aspect of what was going on. I figured if I had the work part done then it gave me more time to figure out the other. I got attention from boys and girls always made my life a living hell, I couldn’t for the life of me figure out what their motives were and by Christ, there always was a motive. I developed a chameleon persona and was able to be who that person I was in company with could relate to, dependent on the situation. In hindsight, looking back I now see it was being able to adapt like this which was a great survival tactic.

1930118_114983674713_1909682_n

In school if we had a test I would be top of the class or striving to be, it was my worst nightmare if I was asked a question on the spot or if I had to read aloud in case I got it wrong. If we were going along the class reading then Id be constantly trying to figure out and time when it was my turn so I could practice. It was the little things that people typically left behind in that moment but I took with me for weeks after. If I gave the wrong answer, didn’t catch the ball, tripped or did something embarrassing I would be humiliated and if someone said something to me that I took offence to then I was holding a grudge for a long time. I refused to do PE, I appeared to be one thing but I was a completely different person inside. I will never forget in secondary school walking with other first year girls and a group of like fifth year boys walked past and the girls I was with ran giggling down the hall and I didn’t run, I just strolled as normal wondering what the fuck the fuss was about. I sometimes stood out for different reasons. 

teen

My teenage years were hell, I struggled massively to find where to fit in so I did some stupid things to prove myself and things to this day that I wish I did differently, a lot of things.

I definitely put on a persona as I was convinced being myself was not who people would relate to. I was massively into hip hop, rap and r&b music which was unheard of at the time. MTV was only one channel then and we had The Lick once a week on a Saturday night with Trevor Nelson, followed by YO MTV Raps which I lived for, I used to try and dress the same, always wanting to wear things that your typical 13 or 14 year old was not going to pick up in The Moderne. I recorded music videos religiously on VHS or made mix tapes, I rewound them over and over again, I spent an hour at night rewinding my tapes to the particular spot I wanted to hear a song, then grab headphones, turn off the light for bed and sing along, rewinding and playing, rewinding and playing, rewinding and playing.

Being asked out cost me “friendships” and caused jealousy, nothing was ever done maliciously on my part but there definitely was an element from other people of being used.

1930118_114983669713_5347733_n

In my teens I wouldn’t dream of going into a shop, a pub or a restaurant without someone walking in first. I would be terrified of going to the bar or the counter especially if there was a group there and paying as I didn’t know where to stand, how to act and I came across very stand offish. People thought I was odd, stuck up and it was very obvious they did. In my head I am dying and wanting this experience to finish as quickly as possible whereas someone standing next to me thinks I am the biggest bitch going. I hated going to new places as it made sense to me to just stick to what I knew as it meant the day was going to be less stressful and I knew what to expect. I always frequented the same places and if someone suggested going somewhere else other than where we lived, there was not a hope I could go unless I had a few drinks in me.

33633_476620159713_1569203_n

I have this ability to lip read and could quickly read the energy of a room when I walked in and to be honest a lot of the time it wasn’t very nice, it was fucking horrible. I knew what someone was saying across the room and people couldn’t figure out how I knew what I knew. Everything was black and white to me, I didn’t have time for fucking around, it was wrong or right and I had to say it as I saw it which didn’t do me any favours sometimes as the person I was calling out was never pulled on their behaviour before.

1930118_114983629713_3682772_n

To this day particular individuals still talk badly about me trying to portray this image of me to people who never probably even held a conversation with me.

You would like to think some word isn’t Gospel, people actually had a backbone, a pair of balls and their own opinion and didn’t judge you or to this day STILL only talk to you based on if other people were around or not, but the joys of living in a small town.

But, I know who is who.

41191_465896059713_8343869_n

It is only now looking back that I see all the masking that I did and actually sometimes continue to do.

I can read the crowd, I know who I need to be for that event, day or few hours and I do it, sometimes without even realising I am. It wont be until that night or the following day when I cant understand why I am so tired that I will understand why I am so fucking drained and that the next two to three days now are a complete write off for me.

I have a strong aversion to horror movies as it just triggers my anxiety and I cant stand them. I am overly emotional, to the point that sometimes I cant attend funerals for people I don’t even know that well as I feel so drawn to the grief of others as I am quite empathetic and very intuitive. If someone else is unhappy or hurting then I feel it, I take it on and it can effect me a lot. 

320581_10150371429684714_2143657201_n

If I have too much on I will become totally overwhelmed and I will get upset. if there is a lot going on at home or Ian is in a funny humour and I’m not, or the kids are trying to wind down and I can see that they are and they aren’t in the mood for anything or anyone in their space and someone is annoying them I get my back up, as I know how annoying it is as I can relate and tap into how they feel and I snap.

I do have lots of resilience and can bounce back in my own time from some major life challenges but I also know that this sometimes also feels like an outer body experience to me.

I am still not over my Nan’s death when I was ten years old, so you can imagine how cut up I still am about my cousin who passed last year. There was two years between us, she was older, she was there from as long as I can remember, she was probably like my older sister, we killed one another but we loved one another. One of the most traumatic times of my life was giving birth to Marlowe last year knowing my cousin was in the hospital next door slipping away. I cried the whole way through it, I knew what was happening but no one would say anything to me as they knew I wasn’t fit to leave. When the doctor discharged me, I got the call to come and say Goodbye. I  am just thankful that she waited for us and I was able to bring her new God daughter to see her, as she passed away the next day.

55608166_10157814567174714_8436834444010061824_n

I think her death also was a wake up call to me about how precious and short life is, how nothing is promised to us, time is nothing, people are passers by and when someone important is suddenly gone, a person you speak to every day, there is this huge void and a wonder of what do I do now.  We all know and hear that sentiment when we experience a tragedy but I think when someone your age or in your immediate circle dies, it makes it all that bit different. Still, a song comes on, the sun is out and you should maybe be onto her about doing something, you can smell a particular perfume or are making a recipe she made and it is like someone has just told you she died, the grief hits like a massive wave all over again.

I love to write, sometimes I feel though that when I write and get things down and out of my head I move on and forget. This used to apply all the time to me when doing exams especially, I got an A in Art History and Geography but once I finished those exams it is like my brain automatically moved them to the spam and delete folder and I couldn’t tell you jack shit about them now. I feel like this applies to a lot of areas in my life and is why I like to make lists and be organised as it reduces my anxiety and I get a great feeling of accomplishment when I can tick things off a list. Like that, when they are done, my brain and mind disposes of them and I am onto the next thing.

I like to sing (to myself) and I will never forget at the age of eleven, fifth and sixth classes were called to the school hall to sing for three teachers, two were nuns at the time. If I could have clawed my way out of that room by my fingernails I would have, the wave of panic was surreal. But like a strange feeling washed over me and before I knew it I was standing on my own and belting out that song like nobody’s business and I was picked to sing in the National Children’s Choir. I don’t think I had an opportunity previous to sing so it was something I did in my room but never in public but I think had I not pushed myself I would have regretted it.

The thing for me is growing up, I always knew something was different, I assumed that the way I did things, the way I felt and the way I acted wasn’t normal and I wondered if any other people felt like that inside too.

Give me any job and within a few months I will be working my way to the top as soon as I have it figured out. When I was still in secondary school I was in charge of housekeeping for a hotel, here I was at the age of 17 putting in job recommendations for people who were years older than me but the role was ideal, it was work done alone or with one other person, there was very little contact with guests and it was quite therapeutic to be honest, doing the same thing in each room.

My anxiety and sheer panic held me back from going to college but I did a diploma course online. I worked in admin jobs and loved the organisational aspect, the typing and the routine and within months was offered much higher positions but my dark side always left me down. I would overthink things, have panic attacks, ring in sick and then before you know it then Im in this vicious circle of thinking the staff is cutting the back off me, Im being judged, how can I go back there and it was debilitating. There was a huge stigma attached to mental health issues 15-20 years ago and you would let people cut the back off you than discuss what was actually going on.

mom

After the birth of my first child I suffered from panic attacks, anxiety and depression and I attended counselling for help. I now recognise some coping mechanisms I had as stimming but the therapist then completely dismissed it at the time.

I never connected the dots until the last few months.

All those times I felt awkward standing in a pub, social setting or group, struggling with what to say or who I could relate to. Or then you had the complete opposite and you would over share, now I know why, it all makes so much sense to me. Sometimes when I have a hard time keeping my emotions together then I can have socially inappropriate responses or be blunt or cut someone off as I just want the fucking conversation to stop.

Funnily enough I do this with people I know well other than people I don’t unless they have stepped across a line with me.

42114313_10157299317649714_4708520535766597632_n

I find it very hard to verbally communicate how I feel so I will send messages as I love the way I can write things down and re read them, re check them and make sure it is right before I send it and it is less of a chance of me fucking things up face to face with someone.

If I am totally overwhelmed then I will be mute and this can come across as being rude or off form with someone when I am just zoned out completely. I am not playing head games the words just wont come out yet then there are times you cant shut me up and I can be highly expressive.

I find it hard to ask for help or if I do and the person says no then I make a mental note not to ask them again. Not in a spiteful way but in a I feel let down so I don’t want to put myself in that position again type of way. As I carry that feeling with me for a day or two and it interferes with my day, my mood, my relationships and I just want to protect myself from feeling like this going forward.

1915685_225655334713_4835089_n

I can get pissed off when people aren’t honest or don’t get back to me within a certain time frame, I need to compartmentalise in my head what I am meant to be doing and I am not a last minute type of person so I need to make plans and prepare myself. If I have to leave the house then I have to know the time, have to prepare myself and if the plans change then it really fucking gets on my wick because it took so much energy to build myself up to do what I intended on doing even if it was as simple as a shopping centre, a doctors appointment or something a lot of people wouldn’t bat an eyelid at doing.

I absolutely hate injustice, this is why I feel so strongly for our kids and the way that they are being treated. I wont let an issue go until I am fully understood. This is why I feel so strongly about certain professionals who are missing diagnosis’ especially in girls as I can see straight through the bullshit. All the diagnostic criteria and studies are done on males yet they are assessing girls based on this information and ticking off boxes as if they want salt and vinegar on their chips, not fully contemplating that they are totally inexperienced in spotting traits that you have to be able to dig a lot deeper and ask the questions in order to see the whole picture. Girls are not the same as boys typically when it comes to presenting with autism and it fucking really frustrates me that we have some people in the system who operate on a level of bias, thinking parents “are all looking for labels” or “paying for a diagnosis” when they believe autism to be poor eye contact and the inability to have a conversation or get upset if their game is interrupted. I know what it is like for the girls and I know how a lot of females could get an Academy Award for Best Actress when it comes to masking. What professionals see in a forty minute session is not the same child parents see 24/7. The reality of it is we live in a country where our children need something on paper in order to be able to have a right to access supports within an educational system. There is no looking for labels, what there is, is a looking for help and services.  

Though I may try and avoid confrontation I will definitely step up to protect the rights of others especially those who are vulnerable.

29354685_10156787013489714_4067588763945826337_o

I am low maintenance all the way, I find it hard with fashion, I like to wear what I feel comfortable in and find trying to find something suitable for an event a huge ordeal to me. I get totally side tracked when shopping and find it so difficult to accessorise or visualise how to pull an outfit together when I am shopping. It will lead me to wander around shops aimlessly and pick up other things and I end up coming away with nothing that I set out to buy, it causes me so much anxiety. What I love and what suit my body shape are two completely different things and I often find that if I find something that suits me I will wear it to death. I didn’t try one wedding dress on, I saw a dress online and just bought it, the thoughts of going into a wedding dress shop was my idea of hell, online shopping though is fucking heaven and making this choice stood to me too as I researched and researched and tracked down the dress for €1000 cheaper in the States.

I only know now that girls with autism have anxiety and social issues can lead to huge body issues and things like eating disorders. It is a fascinating thing to know how they are all intertwined.

24176968_10156365104674714_929649653362126710_n

I am definitely happier in my home as I can control what happens here, I know the routine, I know what needs to be done, what goes where and there is a sense of order. I get really pissed off when things are out of order as it means chaos in my mind, as I am also the person everyone asks to locate something and when you have multiple children with needs who require particular items to help keep them calm then you can see my dilemma at needing things to be in a certain spot. I’m the person that feels they need to clean up or clear counters or put shit away before I go to bed or leave the house. I physically cannot sit down if I know that there is a pile of ware over there or toys on the table, shit all over the floor, when that is all done, then it is like my mind can switch off and I can then relax.

Yet my bedroom can be the biggest mess but it makes sense to me as its my belongings and I know where things are or can be found if needs be.

I love fantasy books, movies and art, I feel that it is such a world I can easily dive into and is such a great distraction from what is going on in the real world. So Game of Thrones, Lord of the Rings, The Hobbit and Harry Potter and I am right there in the midst of the lot of them.

In fact I had an imaginary friend when I was younger and I remember making my mother hold his hand crossing a busy street to her delight and then giving a loud shriek at home when someone almost sat on him on the couch.

11406256_10153502795834714_538423959900622099_o

I do feel I am misunderstood and feel like this has been the case a lot of my life. I feel like being a mother is probably the one thing I am good at and it is hard to know that somethings are out of your control and you cant help your children with. You definitely will have anxiety triggers from feeling that your actions, tone or expressions can be misunderstood and it is only now in my thirties that I feel like I don’t owe anyone anything and certainly don’t have to apologise or explain myself to people unless those relationships are important to me then I would feel a strong need to make any wrongs right, even if the other person isn’t aware of anything being wrong in the first place, once that is clarified, then I can move on.

I love to spend time absorbed doing things I love and I really need my alone time, I’m not angry or rejecting people I just need to decompress from the overload of day to day life.

If something catches my interest then I will be a self taught expert in no time as I will absorb all there is to know about the subject.

If someone is chewing their food, slurping or in my fucking ear I will snap, I need a duvet and two blankets to fall asleep, I need to go to bed with socks on but will take them off only when my body temperature is right. I have to, have to, put socks on before I put a pants on, it is all wrong if the pants goes on first!

10612814_10152771731249714_385059676795627346_n

So with all that said, in the last few weeks I have felt nervous about discussing this or going for my assessment. What I was looking forward to knowing initially, now I was dreading.

There is a strange sense of guilt that comes with knowing that maybe it is your fault that your child or children are autistic, is this your fault, have you put this on them? These are things that go around in your head.

I researched who would do adult assessments and had a discussion with Ian and my own mother about why I felt I needed to have one. Ironically an adult assessment is €1000 cheaper than a child’s, there is no need for referrals and recommendations unless you really want them. At this stage of your life after getting this far I feel recommendations are not what this is about, this is about clarity for me and knowing that I have a stronger sense of self.

I thought that any adult I discussed it with would try and talk me out of it and I was a bit surprised no one did. In fact it only cemented the whole fucking reason as to why I needed to do it as they probably could see things from the outside looking in too. Although, to be fair, they know to leave me off to do my own thing knowing I am like a dog with a bone when I want something, very little will stand in my way of achieving it.

Even a psychologist I met recently and talked to for two hours had a chat with me and I mentioned I was going to go for an assessment and she casually said that she could see traits and my masking. I was thinking holy shit at first but then I also felt a bit more justified in doing what I was doing if that makes sense.

mc 3

It was Bodhi’s diagnosis that led me here and had he not been diagnosed I think I would not have the Out in the Sticks with Six blog, be educating myself and I definitely would be struggling massively parenting as I would fail to acknowledge issues that I can see clearly, now I am informed.

Life has a funny way of teaching you things about yourself that you had no idea about. The irony of me setting up a blog to help raise awareness and acceptance of autism not realising I was a part of this whole equation too.

I am not a firm believer in “we are all a bit autistic”, I read a very good analogy recently that said it would be like saying, you are a bit pregnant, eh, you either are or you’re not. If I am honest I think sometimes that people say this to try and normalise it to make you feel a bit better. I read a very good article which said;

“…people seem to think that you can be a “small bit autistic” or “extremely autistic” the way the colour red is very bright dramatic red or a much softer red. But its not that simple. All autistic people are affected in one way or another in all of the traits associated with autism. So if you only check one or two of the criteria then you don’t call it autism, it is something else. Having sensory processing difficulties doesn’t make you “a little autistic” it makes you someone with sensory processing problems. In order for someone to be considered autistic, they must have difficulties in multiple categories…”

bodhi 3

I sourced a psychologist in the Cork area and the assessment process was very straight forward, you had the option of bringing a parent, sibling or a partner so that they could give an insight into parts of you also. Initially I was going to go alone but last minute I brought my Mother with me and I am delighted I did now as she was able to fill in some of the blanks of when I was small which was a huge help. I was very nervous but the psychologist put me at ease straight away and I was in there for over 2.5 hours and I was able to get feedback straightaway and then you had the option of requesting a report or recommendations depending on what you required.

I am so happy I did it, I feel justified in knowing that a professional heard me and understood and was able to discuss things with me with no judgement involved. I would relate it to when you are at an ASD gathering or class with all other parents and if a child has a meltdown, no one bats a fucking eye lid as we all get it, it felt quite similar here, nothing was off limits and it was quite liberating to talk openly and for it to be perfectly okay.

I was diagnosed with Asperger Syndrome and in my report it states;

“…I’m very lucky in my line of work as I get the chance to meet with truly remarkable people, last Friday morning was one of those days…..my impression was of a beautiful person with a strong sense of responsibility, driven to make life better for others, and in so doing, has to regularly do so out of her comfort zone. She has a zany sense of humour and exceptional interests. I had an impression that she meets each day with vulnerability and bravery….”

I was very apprehensive about even sharing this. My daughter even said to me that I will be judged but that it wont be by people I am close to or who know me as to them I am the same person regardless.

I am not ashamed of who I am or the autism part, what held me back from discussing it was more the anticipation of people treating me differently, which has happened already, you mention Autism and they are talking to you as if you are a child or something just changes in their demeanour.

And I know you will suddenly have all these assholes out of the woodwork then blaming me for things that happened years gone by that they are going to say was definitely all my fault now sure she has that autism thing *insert eye roll*

I could probably give you the list of people who are going to try and pull that shit and if they do, well fuck them.  

I hope that by reading this and following my journey you will, like me, begin to see that when it comes to autism there is a no “one size fits all” and I am sharing my story to let my children and everyone know that there is nothing to be ashamed of and I am really proud to be standing beside them.

I think its amazing that my kids now have me in their corner to not only advocate on their behalf but also know that I am able to identify with a lot of what they experience, that I am just like them.

I look at all of the blog posts I have done to date which have helped people and am so appreciative that my following has been so supportive, I only hope that this will continue as you have been on this journey with me with no idea and to be fair, up until a few months ago, neither did I.

I think this is an eye opener as I am proof that we aren’t all designed to fit into certain boxes, you don’t have to look a certain way, be a certain age or gender to be autistic.

56915077_10157874727994714_2523989801246392320_n

Autism does not change who I am, what I do or has never defined me as a person and it sure as shit is not going to start now.

** The above account is my own personal opinion and traits I discussed are specific to me, each individual will present completely differently, it is important if you are concerned to speak to your GP or a psychologist. I would recommend you take a look at the list of psychologists nationwide here and simply do some research about who is in your area and if they do adult assessments or if any feedback is available in some facebook groups online. A simple name search in a group without posting up any questions should suffice for those who wish to protect their privacy.

For any information regarding autism for children or teenagers check out Shine Centre for Autism Ireland

There is a good nationwide directory of information here in general for autism services. I found it quite difficult to source much information on where an adult could go for an assessment in Ireland and also what a newly diagnosed adult does when they are diagnosed. I will keep digging and when I find some relevant or helpful information I will post it! 

To keep following my journey you can follow me on

Instagram

Facebook

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