The reality of it is, I was ignorant, completely pig ignorant to what autism was or even entailed for a child or a family. I will put my hand up and admit to being one of those people who saw a child maybe scream or lash out in public and feel sorry for the parent who looked severely under pressure but secretly think, I could never cope with that. I can honestly say I was never ignorant enough to tut or pass a condescending unhelpful comment like “a good kick up the arse is what he needs”. No, I was not that person at least but I was the person who was scaremongered into the horror stories you hear about your cousin’s aunt’s nephew’s dog and naively believing it.
I have six beautiful, smart and charasmatic children, if I do say so myself, each unique and yet so alike in ways. Five daughters ranging in ages from 16 years to 9 weeks old and one son, my only son, Bodhi who is four and was diagnosed with Autism in December 2016.
Bodhi’s pregnancy was no different to the others, there was no lightning bolt hitting me some night, no curse a witch placed on me, no revelation as to what I did to cause this. As a parent that is what you automatically assume, as you are consumed with guilt and worry. The first few hours of his life were very upsetting as he was whisked away from me in the ward at 24 hours old with suspected sepsis.
He was taken to the neo natal ward and I cried and cried with worry in my bed. He looked so vulnerable strapped up to those machines, from then I knew deep down I would probably be a little more protective of him. No sooner were we back on the ward again, we were faced with him failing his hearing test. A repeat test a few weeks later also confirmed it, Bodhi had hearing loss in his left ear.
I think we always assumed going forward that any delays were to do with the hearing loss, after all how can you speak if you cannot hear the words you are meant to repeat? He would have good days and bad days, he reached all his developmental milestones, he walked and crawled, was very happy and affectionate, he did have some words but around the twelve month mark I did mention to the doctor that I noticed he was twirling his hands and feet when he was sitting in the high chair which I found unusual. She didn’t seem concerned at all and we left it at that. It was again at eighteen months I noticed that when he got very frustrated he would intentionally hit his head while screaming, again I brought it up with the doctor who insisted it was normal. As he was my first and only son I thought it may just be typical boy behaviour as I had nothing to compare it to and always heard “boys are completely different to girls” but actually at this stage, I trusted my intuition and self referred him for speech language therapy with the HSE.
We were still back and forth with numerous consultants and the HSE who all had conflicting opinions regarding his loss of hearing and what to do. Some wanted hearing aids, another genius wanted to trial a bone conduction head band, a head band on a boisterous two year old boy who wouldn’t keep socks on, some wanted further testing and someone else suggested a brain stem cell test to test his hearing under general anaesthetic. This was a prospect that seemed was going to give us the answers we needed, as any test up to this point were hit and miss, he was two, getting a child of two to sit still in any situation is just not feasible, I was very worried about the procedure considering he was only two years old and needing to be put under. My fears weren’t unfounded it seemed.
They decided on the day (picture taken above) to insert grommets prior to the test, they told us after that his ear canals were so tiny that it took them one hour to insert the grommets alone. They felt that the results were satisfactory and it should help Bodhi in the interim.
Now the hearing issue wasn’t only to blame, what else was going on?
The Speech and Language therapist was as confused as us, Bodhi displayed some signs of autism but not your “typical traits”. He had great eye contact, he was very loving but he had zero interest in toys or play, no interest in initiating or participating in playing with any children and anything you tried to get him to interact with he would literally fire across the room. He communicated with us by pointing at items or dragging our hands down or up or he would put our hand on what he wanted. She was also thrown by the fact there was an issue with hearing on one side. He spent one session obsessed with the blinds in the room, I was living on my nerves, I went everywhere armed with a charged phone and wifi, packets of chickatees and his bottle, the only things that seemed to calm him down and keep him occupied for a little while. The therapist and I agreed we would send the forms off for an assessment even if it was to rule it out at least we would know, as she couldn’t call it.
At this stage we were dealing with a lot of screaming, self harming and regressing with the words and then being non verbal. He would become very frustrated if people were having a conversation, the radio or the television was on and he couldn’t process what he was meant to be focusing on. He also failed to acknowledge anything you were saying to him clearly if you were speaking to him on his left hand side. This meant a lot of whispered conversations so he could process what he was doing at the time, being sensitive to his needs which seemed to ironically trigger the anxiety further. I had lost two babies in 2015 and subsequently stopped working as I was self employed. Who else could we trust to understand our child’s needs better than me? It was decided I would stay home full time.
I had a niece who was born four days earlier than Bodhi and the blatant differences were huge. It was like a slap in the face any time they were together, I love her with all my heart but I felt sick knowing that something was wrong but I didn’t know what. When someone said autism to me I ignorantly assumed that it meant rocking in a corner back and forth, lashing out or being a genius calculating huge numbers in their head and all the stereotypical bullshit we gullibly are led to believe in the movies.
I realised I needed to stop the need for comparison and realise my child will march to the beat of his own drum. It was a refreshing wake up call figuring out that there were so many more ways to communicate other than speaking and it was my job to try and see what worked best for us. Therapies can be great but they can’t speed up what isn’t there or ready. The reality of it is we needed something that worked for us everyday not just for an hour with a person once a week.
As we sent off forms to be assessed to rule anything out or figure out what was going on, we had a long wait and battle on our hands, in more ways than one. We faced the toughest six months of our lives in 2016, due to the anaesthetic given in the hospital and the after effects, Bodhi did not sleep from June of that year until the end of December. This was mainly due to the fact that it was the hospitals policy for a parent to be in theatre and put the mask over their own child’s face to put them to sleep, while they thrash out hysterical not understanding what Mom or Dad was doing. That process alone would be very hard on a verbal child to comprehend not to mind a child who depends on you completely to communicate his fears and issues. We felt we had let him down massively. It was also an error on the hospitals part to not have one of us there in the recovery room before he woke up like we stressed. If you have a non verbal child then he can’t ask for his Mom or Dad, he cannot say he is scared, that he feels sick, that they are frightening him. They waited until he woke up to call me down two flights of stairs and be brought in to see him, at this stage my two year old child was screaming hysterical in fear, eyes closed, gripping onto the rails of the bed with white knuckles, while six members of staff were all gathered around him with masks on their faces. All the PHD’s in the world and not one ounce of common sense between them to back up and stop frightening him or even remove their bloody masks. It took me fifteen minutes to get him to un-grip the bed rail and open his eyes to realise I was there with him as he couldn’t hear my voice over the sound of his own screams.
For the next six months my child was afraid to go to sleep. He would doze for twenty minutes at a time and then wake screaming, he would not let himself fall into a deep sleep, this continued each and every night until about 7am the next morning when he would pass out with exhaustion, at which time it was due to wake the older girls to get up for school. I was then juggling a newborn, the needs of my three older girls, a husband who was working nights, and a two year old who screamed every half an hour and would take an hour or so to get back into the bed. His screams would set the newborn off or vice versa, I would get to bed myself when my husband got in from work at 8am, he would thankfully take over and let me sleep until lunch and then I would get up and continue the schedule for the day with the kids and let him sleep until he went to work and we would start this process all over again. We tried everything, salt lamps, creams, over the counter meds, white noise, dvd on, dvd off, lights on, lights off, sensory lights, baths, massage and even CBD oil. We contacted doctors, consultants and Bodhi’s paediatrician, waiting for an appointment can seem like years when you are living day to day on zero sleep. We were prescribed melatonin and it didn’t work, I am ashamed to say the child was even prescribed chloral hydrate at one point, he took it once and he slept for 2 hours. I will never forget his little face when the taste hit his mouth and him retching and us at the brink of pure exhaustion, needing just one full night’s sleep to re charge, trying to make sure it stayed down so he would sleep.
For those of you not aware, Chloral Hydrate is what they give you in the hospital to knock you out. As a matter of interest I took it myself to see what he had to go through as he couldn’t tell me, the burn at the back of my throat, the hangover feeling the following day, the small calpol bottle size costing us 98 euro, I felt so guilty, it was the first and last time he took it.
By the end of 2016, I had hit my wall, we were exhausted and at our wits end, I had four other children who also needed me and I was conscious of them resenting their brother who I am sure just seemed to constantly scream and take all their mothers time and attention. You begin to lose faith in yourself, you are spread thin, you isolate yourself from people, you don’t want to go anywhere for fear he will kick off, you don’t want people to call in case he is screaming, you are the only person he trusts yet you can’t even help him. I was afraid to bring him out in case he would have a meltdown and I wouldn’t know what to do, he would pick up on my anxiety and home is where he was most comfortable and knew what was happening and had his structure so that is what we did. We stayed home. If I left the room or was out of sight he was hysterical with worry and anxious which lead to vomiting if I didn’t appear on cue. He relied on me explicitly and I was drowning, I was going to the toilet with him on my lap, cooking with him laying at my feet, cut off from friends, any social life, I wouldn’t even go to the shop, I was angry, upset and I couldn’t see the wood for the trees.
He had such bad anxiety, he would bite the inside of his lip until it bled, bite his nails and when he was very bad, his toenails. We have a large family of sixteen grandchildren on both sides so there are always birthday parties, he hated large crowds so we didn’t take him, he didn’t have any parties himself, he didn’t have any interest in toys, it was a very sad period of time trying to come to terms with wondering if this is the way it would always be. He had an aversion to strange men, so I feared any one delivering anything to the house, a repair man, even the postman knocking and me having to speak to them would ruin our whole day as it would set him off and the screaming would commence. If someone called unannounced even family and he wasn’t prepared it would throw him off for the rest of the day. A child with autism needs to know what is happening next, people even those closest to you don’t understand that any one stray from structure and it not only upsets him but it has a knock on effect for the whole household long after they are gone home. It took us a long time to read the cues but I know his limits now and I have to be adamant about rules or all hell breaks loose in my house that I am left to deal with.
Funnily enough, he loved women, especially blondes, it was a running joke, we would do an exhale of relief if any one we had to meet in the medical profession was a blonde female.
We then knew that appointment would go alright. At the time if he liked you he would greet you by pressing his forehead to yours, not with blondes though, he went straight in for a kiss.
We reached out to SHINE advocacy service for help in November 2016, as the HSE told us we had a minimum wait of 18 months before he would even be called to be seen, in the meantime we were to just put up and shut up. This was like a red rag to a bull for me and something under no circumstances that I would be doing.
I learned more in that hour with Kieran from SHINE than in the previous year of wondering what was going on and where to turn. It was twelve days before Christmas 2016 when we pulled the money together and paid 500 euro to get Bodhi privately assessed. We drove to Dungarvan after getting zero sleep the night before and I will never forget it, as he only slept for 45 minutes in the car, that was the extent of his sleep. He fired a toy in the office which missed the psychologists head by millimetre’s, she was able to confirm autism and sensory processing disorder within an hour of interacting with Bodhi. We drove back devastated but at the same time relieved that we knew what we had to do.
I found myself reading up on different therapies, reading posts from other parents who discussed what worked for them and their child, all the while trying to decipher what would work for us. I quickly realised that Facebook groups can be both a curse and a blessing, a treasure of information but yet the negativity and sometimes cliquey mentality can drain the life out of you. First and foremost the most important thing to remember was other peoples stories were not ours.
There is this huge misconception that autism is a general straightforward diagnosis but just because one child has autism does not mean the next child you meet will present the exact same. It is a HUGE spectrum and so many different things come into play. Not all children will be non verbal, you can have a child who will talk incessantly, not all children will display their meltdowns in public, some especially girls, will be great at masking their traits and holding it all in until they come home, ask each parent and they will have their own unique tale to tell.
In our case Bodhi had severe speech and language delay, the social communication was delayed and we were relieved at least he had no intellectual disability. At the age of two he was non verbal, he presented with pica which is the chewing on items but in his case it was just bottle tops. This can be brought on by severe or sudden anxiety which then leads to the nail biting etc. I was relieved at last to understand this part at least.
Bodhi needed help and those who were meant to help him failed miserably. So I fought like never before for my son, I still do. If your child has no voice then you have to be their voice. I asked questions, I shouted, I begged, I pleaded, I cried, I contacted politicians, the HSE, made a complaint as his assessment of needs (forms we sent off previously) was not carried out within the three months it is meant to be by law. I was told Bodhi was number 600 and odd on the waiting list for his complaint to be seen, there was one person dealing with the workload and she was on number 480 at the time and it would be another six months at least by the time she got to us. This was just to deal with the complaint, mind you, not to be assessed. I joked that there was probably a headshot of me on some dartboard within the confines of the HSE and an alarm that went off anytime my number rang, they may have been sick of hearing from me but I wasn’t giving in or up.
I was learning things by the day, it was like this whole secret world had opened up and things I had been completely oblivious to before were so blatantly obvious to me now. I call it similar to Harry Potter, autism being a wizard, the Ministry of Magic being the secret places where likeminded people met up and the Dementors being the HSE and the people idly walking by nonplussed, Muggles.
I now knew that early intervention is put in place to do just that, intervene early in the most crucial stages of a child’s developmental period, the time where the child needs the help and therapies the most, the work to be put in place with the child before they reach primary school going age. Yet the HSE were dealing with so many assessments they couldn’t cope, it was taking the bones of two years to assess one child, at which time the early intervention stage had passed and the parents were completely lost as to what to do. There is no manual handed out with your child when you leave the hospital, we aren’t qualified, we don’t know the first thing about what to do, we are waiting for people who do to come and help educate and inform us. The child is lost in the system, no therapies or work have been done at this crucial time and by the time they reach the age of four then they are telling us that they are removed from their list, no longer their problem and on the Department of Education’s list now, where you guessed it, we start from scratch, all over, on a wait list again. It’s like a cattle mart, you are prodded, poked, shoved and being pushed around.
The catch 22 being that if you wanted to place your child in a school, the school was only accepting a report from the HSE to say that they diagnosed your child with autism, no private diagnoses were being accepted.
So what do you do? You accept you will have a fight ahead, after spending 500 euro for help only to be told it’s not the right type of help. You call in the big guns.
A human rights and civil law solicitor in Dublin, Gareth Noble, stepped in on Bodhi’s behalf and the behalf of a lot of children nationwide. It is because of him bringing the HSE to court to challenge them on the delays that we eventually got Bodhi’s HSE diagnosis done. Due to their incompetence we lost a place in a local school, it is like you jump one hurdle and they place another twelve in front of you. The powers that be at the time, wanted to send my three year old child to school in a taxi an hour each way every day with a stranger to mind him. The same child who if I got out of the car and walked around to the passenger side would be hysterical, would vomit if I was gone for too long, who didn’t eat for up to three days and who didn’t sleep. This was not their problem, they have a list of names and a list of places, accept the place or keep your child at home with you was the alternative. I read a parent in Cork was offered a place for their small child in Waterford, it was then I realised the system was beyond broken.
Did they realise that if I insisted in putting him in a car that he would then refuse to get into any car at all, as he would assume the worst and relate any travels going forward in a car as a negative experience?
So I refused the place and had to fight for a place locally where I could take him myself, a fight which we eventually won.
Another misconception is that your child will ‘just go’ to school. You are ignorant to the fact that your child will as normal just go to playschool and then onto the local primary, not a child with autism. The reality is you need to always plan at least two years ahead. If our children all have different needs then not all teaching practices will work for them. Some may need to attend a special school, some may need the one on one help in an ASD unit and some may progress and be able to function with an SNA in a mainstream class setting. The problem being there are no places available for our children and this situation doesn’t seem to be improving so you are always waiting to hear if your child will be accepted in the setting they need that will embrace their individual needs, which is not always attainable. You need to have your child on a list in many schools in your locality, you need to have all your I’s dotted and T’s crossed, so to speak, you have no clue what the next two years holds in terms of progress or what he will need education wise so you have to cover all bases and try and get his name on to as many lists as possible. With six places in one unit and the possibility of five of those children staying put, that means one possible place opens up every year. One place when hundreds are looking, that is the reality of education for a child with Autism in Ireland right now.
We found a fantastic home tutor while we were waiting for a suitable placement, which gave us four hours a day which he spent with her one on one and this was the beginning of his progress and where things took a positive turn. She was blonde, which obviously helped, he thrived on the routine, he soaked up all the work put his way, he would hear her coming up the stairs and would run and sit at his seat and wait for her. He rose to every challenge, he had his bad days, don’t get me wrong, some days he would try to fall asleep two hours in, but she persevered. My heart felt so full, listening to her sing with him and try and encourage him to join in, he would belly laugh constantly with her, then one day, he said his name and her name.
We were overjoyed, things started happening from here. My husband and I were so thrilled the day he took a ball and initiated play with his sister by throwing it to her and taking turns. Then if his cousins came to play he would participate and they would run up and down the hall for hours. The smallest of things were everything to us.
The day (above) he finally acknowledged and pointed out an animal.
It was around this time that he started communicating through lines from movies, he was really into Finding Nemo, Toy Story and Ratatouille at the time. This involved watching the same movie repeatedly for months at a time. He would obsess over the same, the ritual, the routine, he knew what to expect next and it was a big thing for him to even entertain the idea of watching something else and trying something new.
I will never forget sitting with him as he was watching the movie, he started to repeat a line, as I happened to be sitting right there, I stopped and realised at that exact moment what he was saying, so I paused the movie and repeated what he said, which was “if nobody wants it, then why are we stealing it?” and Bodhi turned and his whole face lit up. Someone finally understood him, he was ecstatic, it was as if someone had lifted a huge weight from his shoulders, so we sat there and repeated that phrase for hours and hours.
What my son taught me was that through patience, understanding and praise he would try again and he did. I also learned that by acknowledging his attempt it gave him the confidence to try again with me as I was the one person who actually “got” him. If he made this huge attempt at asking for something then you had to give it to him immediately to reward him for his efforts, to encourage him to keep going, he would know if he used words he got what he wanted, slowly but surely we were both learning.
The reality is you have to leave your ego at the door, put your own dreams and desires to the side which can be a very hard pill to swallow, which I believe one parent will struggle with massively more than the other. It is the idea that your child won’t necessarily rise to the occasion when it comes to the parents expectations, they are still focused on the scaremongering aspect. Here though is where you need to deal with your own issues and not project them on to your child. Educate yourself, is this about them or you? Do they really want a close friend? Do they desire a big birthday party? Do they prefer to play alone? Are these wants theirs or yours? Ask the questions, figure it out, if they are happy, leave them be. A sociable independent child who goes to every activity possible five days a week isn’t necessarily happier. Every child is different.
The other parent will automatically go into autopilot, look at things logically and throw themselves into the constant reams of paperwork, appointments, doing all the research and make it their mission to get proactive and keep busy.
Yes life is tougher parenting wise but doesn’t every family have their struggles? What about single parents out there who have no support in the home, no one to take over? What about those families who have more than two or three children who have special needs, no help, no end in sight? The list of different circumstances is endless.
With zero services available to us, as parents you have to gauge from your child what therapies you think that they might benefit from. The HSE will have no problem in telling you a list of therapies he needs but have no means to provide any of it to you. Keep in mind that any therapies you choose are all out of your pocket and any one assessment can cost the bones of 150 euro, any additional sessions will be at least 80 euro that he will need at least one a week of to make any sort of progress. You really need to pick and choose when you are paying out that kind of money, what he will tolerate and what will work for him. There is this misconception that all special needs parents are receiving handouts from the state. Bullshit, we don’t and aren’t looking for them, we are a one income family and my husband works around the clock to provide for us. We just want the help that our child, that all children around the country need.
We started hippotherapy, it is occupational therapy on horse, so the concept being for every footfall the horse makes it sends a hundred movements back up through the body which in turn can result in the child needing to chew more, drooling, using their jaw muscles or in some cases, talking. In our case Bodhi started to talk.
In the first week he called his sister “Phoenix” by name and we all froze on the spot. After more sessions he started to even say “I love you” and started repeating most words which we said to him. We realised then he has a phenomenal memory and recalls things on sight. He started picking up magnets and listing numbers correctly, he was memorising pages in books, which we found out by accident one day as he went off mid read to look for another book he saw earlier that month which had the same image, he found the page and held them together side by side to compare. As the sessions progressed he started counting one to ten, calling all of our names, saying “bye now” when he wants you to go or is ready for one adult to go so he can focus on another. He understood most of what you were saying to him and was very slowly beginning to now follow direction. Gradually I began to not have to replace bottle tops from chewing, he needed no medication to help him sleep as he was actually sleeping.
Bodhi is extremely picky with food and can go days without eating and then gorge. It is not as simple as “he will eat when he is hungry”, or constantly offering him foods, a concept even family don’t understand. With sensory processing disorder, your body is trying to process either the texture, taste or smell and simply cannot eat some things, if you push it, it can lead to vomiting and then the flat out refusal of all foods which then leads to bigger problems. So you begin to bulk buy things he will eat, you let him eat what he wants because he is actually eating, you praise and encourage him when he is trying and you take it day by day, if it means letting him eat pasta and cleaning his hands after each individual piece, that is what you do. Have confidence in the fact that there will come a day when after watching others he will try it with a fork, you have to pick and choose your battles. You have to offer the same food each time that he likes, if the brand or packaging changes you are screwed, as an autism parent as it means your child will refuse that food going forward. He used to like McDonald’s chips, he would take the little white packet from a happy meal and have a few. My husband made the rookie mistake of ordering him a large chips one day and because they came in a red cardboard package he has refused them ever since. You keep things the same or risk the refusal.
The therapies and movements in hippotherapy are done through the encouragement of play working different parts of the body. Each session may require him to sit backwards or sideways even at times on the horse. So if his eating was poor at the time then the therapist would work his core muscles by getting him to stretch up on the horse. The difference in his appetite would be extraordinary after those sessions. I found it amazing as he loves certain crisps, but anytime he was attending therapy here he would have lost any inkling for crunchy foods and would ask for things like yogurts with the opposite texture. The therapy was obviously fulfilling a sensory need so it took away the need to be crunching, it was amazing to see. It took us quite a while to get to this stage, he was vomiting on arrival up until the third session but I know now if I didn’t push him out of his comfort zone, there may still be no speech. The sessions here were the huge leaping pad he needed that put in the groundwork for his first year in school.
Bodhi’s year in SHINE last year was the making of our son, which brings me to the joys of autism. The trust you need to have in order to leave him with someone has to be huge. I gauge his reaction, I watch out for his cues and my son is probably the best judge of character I have ever known. The jump in positive behaviour and progress from the age of three to four has been phenomenal. There is no longer as much anxiety, he sleeps through the night, there is no need for medication, he will eat, there is not as much screaming, no aversion to men, he goes for a haircut with his Dad and they go swimming, he will come to the shop with me, he now goes to family birthday parties, stays for a bit and actually enjoys them and he also, wait for it, loves a brunette!!
Bodhi ran into that school every single day, he had four other children in his class that he treated as his siblings. They would greet each other every morning with a hug and chase one another around until the doors opened which is where Bodhi would bowl his tutor over with biggest bear hug and she would squeeze his cheeks and call him her “little Johnny Sexton”. We all gasped on the random morning he arrived and said “Good Morning” just like that and continued this ritual then throughout.
The work they did with my child and every child in there was absolutely incredible, he tried things for them in there that I had been trying for years with no luck, such as the drinking from a cup and the eating of a sandwich. They taught him to use his words instead of lashing out, how to use sign language to communicate, introduced him to visual schedules, how to use the words “I want” as a prompt to establish what was distressing him, helped him to become fully toilet trained, all the while working with us at home constantly, nothing was an issue and to say my son was in the best hands would be putting it mildly. You build some incredible relationships with people on your journey, they are a huge part of your child’s development and are people you or your child will never forget, like the tutor who cried with me in July when she and Bodhi had to part ways.
As parents we are human, we need a break from our child as much as our child needs a break from us, autism or not. The feeling of being able to walk away and not have to worry how he was, if they would treat him right or if he would be okay is something I can’t even properly put into words.
When the word autism enters your world, you are scared, you worry about the future, how will he get on, will he need someone to look after him or help him when we are no longer there, who would that be, do you put that responsibility on his siblings, what do you do? You have to stop though, as much as it is the practical thing to be thinking about, you need to focus on the day to day, which is more important as this is what is going to get your child through and reach their full potential. If your child was studying for the leaving cert you don’t keep bloody harping on about it in Junior Infants, you let them be a child as they are small, let them play, let them be free to be themselves, then focus on the subjects that they are good at as they get older and you support them in their strengths and get the help they may need for subjects they may struggle with. As they reach pass or fail each test in Primary school you don’t constantly refer back to how are they going to cope in the Leaving Cert do you? You just acknowledge it all being part of the bigger picture, this is quite similar.
Autism enters a whole family not just the child’s. The stresses can be daunting, it is very important to note that strategies and supports be put in place for your child’s siblings also as they need an outlet to vent with people who are trained in this area.
With five sisters I know that he will always be looked after, one daughter even mentioned to me recently that if the man she marries won’t have Bodhi as his best man then he is not the guy for her. My daughters have become so much more open to children with special needs, being accepting of all children and raising awareness in their classrooms and with their peers. They celebrate in every little thing he does as much as we do, they are his biggest supporters and that is a beautiful thing. They clap when he accomplishes something new, their friends know in coming into our house that they clap too, on any given day you can be faced with a hug or a child who just doesn’t fancy wearing clothes and now they don’t bat an eyelid at what kind of day we are having, it is what it is.
Autistic traits are natural. We are constantly telling our children to stand on their two feet, teach them to be strong and responsible, that it is okay to shine, that you need to talk and it is okay to open up as we are all aware mental health is a huge priority in Ireland. Yet when a child has any blatant differences society would prefer they blended in and conformed? What kind of mixed messages is that sending? If you are embarrassed then you need to address your own issues, teaching a child, autism or not, to repress their uniqueness can do way more harm than good, celebrate the differences.
By accepting a lot of this and going at his pace, Bodhi now has three and four word sentences, he can count up to 40, knows his ABC’s by sight, can write and spell them and his own name. He knows all the months of the year, days of the week, all the various colours, their spelling and shapes, he can be heard finding a semi circle and a hexagon in random items around the house. He teaches HIMSELF how to spell, he memorises words in minutes and astounds us all every day as he reveals through the physical spelling out of letter shapes or by reciting, difficult words for a four year old, the words recently are iguana, jaguar, elephant, rhino and giraffe. Words that my 7 and 10 year old are saying they aren’t even sure how to spell.
I recall an instance where I brought him to school and as we were driving he made a bit of a fuss as we were nearing a junction in traffic when seated in the back of the car at about 8.30am. When we returned that afternoon about 2pm or so he took out his letters and spelled YIELD on the table, it was what he remembered earlier that morning, the sign that was at the junction. He waited all day to come home and spell that out.
As I mentioned earlier he loves films and he loves searching youtube for clips on how his favourite ones were made. We recite lines from movies still and he belly laughs as I call them out with him. As you all know the intro to some movies will have words such as 20th Century Fox etc.. I was sat at the kitchen table a few weeks back and with nothing beside him only his letters he spelled out, “20th Fox Searchlight” from memory, you literally could have knocked me over with a feather. I record these moments and treasure them dearly, this is just as important as any Leaving Cert to me.
He has a huge range of words now and to think this time two years ago we wondered if he would ever speak. He spent the summer on the beach, did a surf camp for children with autism and became a big brother again in June. He adores his baby sister and will ask me to “sit down” and “hold” so he can hold her and he insisted on giving her a bottle the other day. He has a huge interest in jigsaws, loves the trampoline, his balance bike and more importantly playing and initiating play with his cousin and his sisters. He will be starting his new journey in a Junior school for children with Autism, in September and I am excited to see what this next step will bring.
I document on my blog “Out in the Sticks with Six” his strides and achievements, along with the realities of parenting six children, I like to share the positives and share our humour in the hopes that another family or parent out there who is just starting out on this journey knows that it can change, it does get better and with the right supports and therapies nothing is impossible. Also to reach out and maybe ask me a question even privately, I am not saying I know all the answers but I certainly can relate to the loneliness and struggles and may be able to point them in the direction of someone best suited to help. The hardest part is accepting the diagnosis and getting yourself out there in terms of asking questions, looking for the support and being proactive. You don’t have to be a part of every group and blog out there, it is exhausting, you familiarise yourself with what is available and then narrow down what works for your family and your child and stick with that, what works for YOU.
You quickly learn that his milestones are also yours, I tend to take on his emotions, I felt so overwhelmed at things like him not understanding when we said goodbye to his tutor I knew it was forever, where as he just presumed he would be back again the next day. He was absolutely broken hearted the week after when there was no school, he called for his tutor by name in the car and it broke my heart in two. For two weeks after he was lashing out at one of his sisters he would be closest to, he couldn’t communicate why but in hindsight I see he was upset at school being over and this was his way of expressing it. If you had asked me this two years ago I’d be clueless and thinking he was being bold.
You learn so much about yourself through your child.
Is autism difficult? Absolutely, but don’t mourn the child you thought you would have, instead you embrace the child right in front of you.
In essence my boy is full of love and empathy and you cannot teach that. He insists on hugging those he takes a shine to and funnily enough loves to greet elderly gentlemen he comes into contact with by shaking them by the hand. He loves music and gets very emotionally invested and can get quite teary when listening to Nessun Dorma. He has a wicked sense of humour and has this week insisted on calling us, his parents, by our first names thinking it’s hilarious. He also deliberately calls my teenage daughters friends (who are boys) by the wrong names to keep them on their toes, laughing while they try and correct him, knowing exactly what he is doing.
Sometimes I think he has the right idea, in the words of Einstein himself, who didn’t speak until he was four years old, when asked why not, he replied “ I had nothing to say”.