Irish Autism Dad

Thoughts, Ideas, Ramblings of a Dad learning how amazing his autistic twins can be


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Education

Our eldest daughter began primary school this past year, and at times I wonder who is being educated more; my daughter or I! The curriculum of junior infants has matured and broadened in scope quite a bit since my time attending all those years ago. Every evening when I see her at home, there is a new topic of conversation from space to flags to nationality and all the way through to diet and health. Constant in her daily observations are the presence of her class mates, and the individuality of these other little girls is greatly informing her learning. The classrooms I grew up in were comprised in the main by other similar boys of a white Irish ethnicity. I am delighted to see that in the intervening 25 years, the classroom now resembles far more closely the society we live in with all ethnicities and backgrounds in attendance. This can only enrich her (and my!) learning, and make for a far more inclusive society as these children mature and grow up.

The department of education and the teachers are doing a great job of leveraging the opportunities for learning that the new multicultural society and classrooms provide. However, there are elements of difference which to my eyes still need to be addressed within the classroom setting, and also in the homes of all the children. What brought this home for me a few weeks ago was when Maisie came home with a note in her bag from the teacher apologising for a scrape she received in school from a classmate with special needs. There was no mark on her face but we asked her what happened and if she was ok. She then told us about how her friend had slapped her on the face and how the other little girl wouldn’t stop being bold. We started to discuss with Maisie how this little girl was like her brother and sister and needed extra space and patience; at which Maisie became very upset and blurted out that “yes, yes. They have the Autism” but that her brother and sister were different as they’re younger than her friend in school.

I was actually shocked when Maisie said this. We have been introducing her to the fact that her brother and sister are different, and have autism, but to hear her say it aloud about another child in such a way, such a label, frightened me. We had no idea that there was a child in her class with special needs, and indeed subsequently found out that this little girl has the assistance of an SNA at times during the day.  We shouldn’t find out about this in such a way. Schools should be open about the fact that there is an SNA helping a little child in the class. In the same way that the school is featuring Chinese culture this month with the girls, and introducing elements of Mandarin to them; the school should be educating the children properly about the different needs that different people like those with Autism, Dyslexia and other needs have. Proactively communicating to the families of the children would also help spread this learning, and break down any untruths or lack of understanding of special needs. As a parent of children with Autism, we could have used the example of this little girl in Maisie’s class to help her understand the differences that she is starting to see in her little brother and sister. Equally other parents could address the fact with their children, so as to avoid the little girl being seen as “bold” or having a temper in class. Labels of any kind should not be used in a reductionist manner to educate our children.

I grew up ignorant of any children of special needs. Before my twins were diagnosed with Autism, I had never met anybody with Autism. This lack of understanding compounded my disorientation when we received the official diagnosis for the twins. If I had been better educated to understand what was possible for people with Autism in life, then I believe it would not have felt like such a terminal sentence that day. In little under a year, my understanding of Autism and in turn all special needs has transformed. Whilst this journey has been driven by my own children, I feel that educating all children now in primary school as to all the differences we share and own should be a cornerstone of education.

It was great therefore to see Adam Harris (@adampharris) on the Saturday Night Show a few weeks ago, showcasing the great efforts that he is engaged in with his website and movement As I Am (@asiamireland). He is leading efforts at bridging this ignorance and lack of understanding amongst older children in school here in Ireland. Adam clearly articulated the challenges that this lack of empathy that arises from being uninformed can create. Nobody wishes actively to discriminate or show a lack of understanding towards people, but a lack of education and experience about individuals with special needs such as Autism, unfortunately will result in inappropriate responses towards these individuals.

I also learned of an organisation through a good college friend who upon reading the blog reached out to me to share his experiences through the efforts of his family supporting an initiative called “share a break” (http://www.muiriosa.ie/menu.asp?menu=44&parent=0&item=00012). I had never heard of this or similar schemes run by www.kare.ie and www.nhsn.ie . These schemes recruit volunteer families who are willing to accommodate an individual with special needs across a variety of learning disabilities, on a short holiday break in their homes. This obviously provides a great respite for the individual’s families and the individuals themselves; but it also provides a fantastic learning opportunity for the host family particularly the children. This is the experience that my friend related to me, and his family all fell in love with their guest and his personality. He greatly enriched their lives and helped them build that understanding and empathy for individuals who are not in the norm.

We are right to seek to understand the different cultural backgrounds of our friends, colleagues and neighbours but we should also look past a person’s visible traits such as ethnicity and look to the other important elements that make them who they and their family are. I do not have Autism, but through my kids, I have started to look at the world with an augmented lens that takes account of all people with different needs. This message needs to be shared with the next generation so that they can learn, understand and seek to accommodate everybody and their needs. Creating a more empathetic and welcoming society should be a goal for everybody regardless of their personal circumstance; and starting in the classroom would be a great place for now.


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A New Year’s Resolution

I have never made a New Year’s resolution or really paid the phenomenon any notice in conversations with others. In work and in college I have always found that the structure and goal setting is consistent and demanding to such a degree, that in my personal life I need to let myself free of what my personality sees as shackling constraints.

Thanks to my Christmas present I am coming to the conclusion that this 180 Degree delineation between personal and professional approaches to life is counterproductive! Having recently graduated from a two year part-time executive MBA programme the thoughts of picking up a book in the pursuit of leisure and relaxation left me in a cold sweat. However, I have always loved reading and discovering new ideas, themes and characters. The present of a Kindle last week has put me back in touch with this love and source of enjoyment!

Through this new medium for reading I came across a book which has proven quite inspirational in a very short space of time. The book is “Son Rise: The Miracle Continues” written by a father (Barry Neil Kaufman http://www.barryneilkaufman.com/) of a boy with Autism and his efforts to engage and connect with his son through the barrier of Autism. It is a fascinating book and story (that continues today across the world helping other children struggling with Autism) but it was the foreword written by the author’s son that resonated the most.

Through his parents and his own efforts, Raun Kaufman has grown up to overcome his Autism and is a University graduate and international speaker on Autism. When he speaks of his parents and how they handled the diagnosis back in a time when there was little awareness of Autism, I take note of how I can employ the same spirit in my resolution for 2015;

                “My parents came up with the radical idea that my autism…. was a chance to make greatness out of              

                                      something commonly viewed as unquestionable sad and tragic”

                                                                                                                                                                (Kaufman, 1994)

Six months on from our final diagnosis for the twins, it is this greatness which it is undeniable to see in them every day. Bonnie now forms basic conversations of her own accord with you and is generally a whirlwind of interaction (and destruction). And even Milo has grown so much in the past few months since gaining a place at a specialist preschool in Dublin (http://www.palspreschool.ie/). Their manic greatness is as I say undeniable but it is also who they are. This has been the source of inspiration for many of my previous posts, but I particularly like the take on their personality as touched on by Raun Kaufman;

                   “You don’t have to ’cure’ your special child in order for his or her specialness to have meaning and

                           value. The value lies not in ‘results’ but in how you treat your situation and your child”

                                                                                                                                                                (Kaufman, 1994)

Many of the New Year’s resolutions made by people will not withstand the first weekend of January. There are a multitude of reasons for this, and most are rooted in the individual. But why do we place unrealistic goals in front of ourselves and then in a “win or bust” mentality judge our efforts by said unrealistic goals. It is in the “how” we attempt to achieve our goals that we have a chance to change our lives. Losing 10lbs by Easter appears a reasonable goal but if you attempt to achieve this goal by an unsustainable diet or gym routine then once the goal is achieved, the practices will die off as your focus was on the end result and not the how you achieved it. In work and in university specific measurable attainable relevant and time-bound (SMART Goals) are a way of life. When the Kaufman’s received the diagnosis of Autism for their son, they had no end goal in mind but rather adopted an open and all-encompassing attitude that ultimately led them on a path to happiness with their son and family.

For the past six months since our final Assessment of Need diagnosis from the HSE, I have been through various phases of denial, anger, self-pity, desolation and hope…. often in the same morning. However, I had no focus because I was searching for what the end result would be that I could aim for with the twins. To force fit a dream scenario in ten years time does my twins a disservice. Their potential is limitless and it should be afforded just that opportunity; the opportunity to exceed expectations and societal norms. Every child deserves the chance to surprise its parents. Those moments of surprise are what help’s get every parent through the daily routine. We delight and share war stories like kids around a camp fire telling ghost stories, when we recount how our little darlings managed to reach up and climb the stairs unexpectedly or can speak French in sixth class better than many of us could ever hope to at the end of our secondary school education.

I now have my New Year’s resolution for 2015 and beyond. I need to focus on the immediate next steps and behaviours needed to help all my children stay happy and continuing to grow. We all need to focus more on the “how” we achieve our goals. By walking the stairs in work everyday or leaving the sugar out of that daily coffee you will be creating a far more sustainable path to losing 10lbs than a January fit camp binge in an attempt to make the Easter deadline.

My goal is for my children to be happy and all that they can be everyday starting today. If we can form these habits now then I know that the twenty year horizon will take care of itself. So let’s all focus on today and the “how” we live our lives. If we are happy today in our behaviours and habits then regardless of the situation that life will put in our journey, we will be able to adapt and be happy well into the future.


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What does Success look like?

The days have begun to get colder (really really colder!!!) and the daylight hours are dwindling as Autumn well and truly sets in. This tangible change in the seasons signals to people like me only one thing. Rugby. This is Rugby weather!! And tomorrow sees the start of the now traditional series of Autumn Internationals between the North and Southern Hemisphere. I am delighted that I will be there in Lansdowne Road to see Ireland beat South Africa (Please, please, please…..) but it has also made me reflect on what success would look like tomorrow when Ireland take on the #2 team in the world who are arriving into Dublin on the back of beating the seemingly invincible New Zealand All Blacks.

The respective coaches are now asked by way of routine prior to the commencement of the series, what does good look like for you. Is it three wins from three or is it the performance that’s important, and so forth. In my professional career this is also a common refrain. The logic is that if you are not clear on your objectives before you begin a campaign or project, then how will you know if you have been successful? If you have clear objectives prior then you can quite easily measure your success during and after your efforts. This is a well founded practice in sports, business, healthcare and elsewhere in the world.

However, do parents set objectives and imagine what success looks like for their kids prior to their birth?

I think they do. We did. Either consciously or subconsciously, we did. I believe that this vision of success for my twins was very much in my subconscious and largely informed by the world and culture that I and all of us have grown up in. We were worried with twins as to how could we afford their education? Would we be able to send them to university? Would we be able to afford to help all three children start their adult lives in a comfortable fashion?

This vision and preconceived ideas is the primary reason why we as parents endured such a period of grievance upon receiving the official diagnosis for our twins. We didn’t lose anything. We didn’t leave anything physically behind us when we left the room; except that subconscious vision of what success looked like for our twins with autism. My son would not now play rugby for Ireland. Our twins would not live an “ordinary” life, nor would we. Would we have our twins live with us for the rest of our lives? What would happen to our babies if anything happened to us??

No parent writes down what success for their kids looks like prior to their birth. Nor should they; it is their life and their journey. Your responsibility and your key success factor is primarily did you do everything in your power to make them happy. Did you give every effort in their upbringing to ensure that you equipped them to deal with and prosper in the world we live in. This aspiration does not differ for our 5 year old “normal” daughter from that of our 3 ¾ Year old twins with ASD.

This simple demarcation between what we “expect” of normal children from “other” children should not be as big an issue for us all as it is. When we met with the twins clinical consultant last week she was amazed by the progress in six months that they had both, but particularly Milo had made. This was a subjective statement and opinion, yet we as parents took this as an unequivocal and quantitative measure that the twins are on the right road.  What struck me in as positive a meeting as it was, was that neither the consultant nor us could state what success looked liked for the twins. They are currently in a fantastic preschool for children with ASD, but this will not last beyond next year. After this current school year, what is to become of our twins?? What would they be able for or what would be the appropriate environment for them. We as parents are unsure but more to the point neither are the experts sure. With such a shifting basis for assessment it is very difficult to unequivocally state what success for the twins will be in 12/18 months time let alone 12 or 18 years…

In this difficult circumstance we still must maintain a focus on what success for us parents and as a family looks like however. And we are both clear as parents that it is happiness. Are the twins happy in themselves? Are they happy with each other? With their parents? With their Sister?

If we can keep ensuring that they progress and are happy throughout their journey, I for one will feel that I have been a successful father. This success will not translate to others around me, but it will allow me as a father to be happy that I am doing all that I can do. If my son does eventually progress and develop to play rugby for Ireland in 18 years, great. If he doesn’t but is happy in his life and with us, awesome.

We all need to keep an eye on what success means for us, and for our children. Otherwise, we could let slip the many achievements and moments of celebration that appear n our lives every day.


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Progress

The twins have made such huge progress in the past two months since beginning their education in PALS (PALS Preschool). Milo now has not only words and expression, but in the most meaningful change for my wife and I is actually trying to interact with the world. He is trying new foods and trying to communicate via repeating words in a way that he never did. Similarly, Bonnie is showing the beginnings of empathy and interaction with her sister and us in a way that seemed improbable only a matter of weeks ago.

This tangible progress is however at risk by virtue of the fact that the twins have a check up with their original consultant in the next few days. The consultant should be viewed as a person there to aid and assist us as parents through this difficult period with the kids. However, I feel as if the progress I have seen with the kids is now at risk as the consultant can take away weeks of progress with one or two clinical sentences upon meeting with the twins.

The consultant is human like us, subject to the same individual and subjective perspectives as we are. Yet we invest these individuals with an authority and air of finality in their judgements which only serves to undermine our own sanity as parents. Through their clinical training and position held they must view the world and patients as black and white. However, the world is not black and white.

I have always held the belief that women are the best judge of their own children. The bond that I have witnessed as a father, formed between my wife and our children through pregnancy and birth, through to feeding and growing up is one that nobody else in the world can rival. With this relationship comes an innate connection and ability to understand one another that is unique. Mothers should trust this connection more when it comes to their children. Why let a stranger hold sway over you own opinion of your child. We both knew our twins were different, and we both now know that they are making progress. Why should the consultant’s opinion change this?

In a perfect world the consultant will tell us that we are right. The twins are making progress, and we should be so happy at the change in them so far after such a small time with the team at PALS. This is not a perfect world. I am fully prepared to debate the merits that we have seen of the twins progress with the consultant, but I know that just one inopportune word used be her will resonate long in my wife’s mind with regards the twins progress recently.

I could write a host of posts about the poor interpersonal skills of consultants, but this is nothing new. As parents we should be ready for their clumsy use of language and body language. We need to own our own feelings and thoughts about our children. In matters of clinical diagnosis we can refer absolutely to the experts; however, in matters of our children we are the experts. We need to trust ourselves more and represent ourselves with more authority with individuals inundated with case files and workloads in order to allow the clinical staff to give a true individual perspective.


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We all have Skeletons Daddy!

This is the first year that we will really have Halloween in our house as in previous years it has largely passed by our eldest 5 year old, despite her being dressed in a variety of costumes and being in receipt of too many sugar products!! She is delighting in everybody’s “spooky houses” and as we were dressing our house last night she stood back and took particular interest in a luminous spooky skeleton.

“So that’s what our skeletons look like. Do you know we all have a skeleton Daddy!” This idea of our skeletons is a recurring theme with my 5 year old daughter (She has referred to her body as her skeleton on and off for the past year. She came home last year from Montessori and told me how she had hurt her skeleton in the school yard when she fell over). However her belief that all her school friends are ultimately the same skeleton regardless of nationality or capability is resolute. There was a little girl last year in her class with Down Syndrome who was her friend and they had great fun together. Difference was never an issue for them, but yet it is for us adults.

The world and previous generations teach us to segment and label everything in our environment. From music and movies to people and their personality types and careers… You like Classical music? Well then you must be stuffy and upper class. Accountants are such fun. Artists are weird and unique. However, the reality is that we are all weird and unique. We are all unique snowflakes! In writing my undergraduate thesis I came across a concept re: stereotypes that really resonated with me. The academic  quote was “stereotypes are a cognitive anchor” that we all use. Stereotypes work because they are a shortcut for us in digesting and understanding the world around us. Stereotypes help us navigate unconsciously through our world. A man begging on the street? Steer clear he is a drug addict. We all access this stereotype in order to make a quick call on how to proceed in a situation. However, stereotypes are not true. We all have skeletons and each of us is an individual.

I do not hide the fact that my twins are autistic. However, I also have realised that most adults cannot segment and understand the information that my twins are autistic. In conversation when it arises, I can see in their eyes the internal search engine kick in as they try to access the stereotype for autism. When this buffering occurs and there is a gap in the conversation, I just sigh and look sympathetically on the person I am talking with. I do not blame people for not being able to handle the reality that not all kids are “normal”. But I do not want to put other people in the uncomfortable position whereby they scramble for inane chit chat once the autism word arises in conversation.

There needs to be more education out there for kids in school that are all equal. A child with dyslexia or autism or a bad temper is still a child. They can still be friends. Every child deserves a childhood regardless of how aware they are of that childhood.

More important than this is the need for adults to be educated. When a parent talks about their child who is different; people don’t need to lie about how “they know what they’re going through”. Just listen. Ask questions. Laugh at the stories. Don’t feel guilt or shame or embarrassment. The more we all take a genuine interest in the lives of those around us, and in those who are different to us; the better.

A lady who we have met a few times now with her autism assistance dog made this plain to me when she told us about how when her 7 year old son with autism would have tantrums in public when he was smaller, nobody looked. When he got bigger and continued to tantrum, people began to stare in disbelief as to why a grown child who looks “normal” would behave so strangely to them. Once she had the assistance dog with luminous coat on with them, then nobody looked. The other people saw the dog and accessed the stereotype in their brain to tell them that the boy was different. No need to look. Just steer clear. Just like the man begging in the street.

People need to take an interest in the world around them, just like our children do. Only by asking questions and seeking to understand and acknowledge difference can we grow and gain new levels of understanding.


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5, 4, 3, 2, 1….. Blast Off!!!!

It is two months since the twins have been officially diagnosed with severe autism spectrum disorder. In reality though it is over a year since my Wife and I had begun discussing the possibility that the twins needed help in their development as key developmental milestones slipped. In retrospect our concerns went further than just a year, but that is a separate topic and subject of a later post!!

It is fair to say that over the last 3 ¾ years with the twins, it has felt as if we were going backwards. Every passing day seemed to further cloud our judgement and opinion of their possible condition and subsequent outlook. It got to the point where we would have given any possible distraction from the conversation undue attention (you mean spending a night talking about the ideal type of blind for a kitchen window isn’t normal??! J).

Since we have received the official AON diagnosis we have been unbelievably fortunate to secure the twins a place in Pals Preschool (http://www.palspreschool.ie/). We are so lucky that the twins have had an official AON assessment as well as the fact that they have found such a great preschool such as PALS. They love it there and the difference in their demeanour and lower levels of frustration with us and the home is a great source of relief at this stage.

The progress and hope generated over the past fortnight has given us a sense that perhaps there can be an upside to the twins diagnosis. We are under no false perception that there is a “silver bullet” solution in one school or another, but we do draw hope from the fact that the twins are so happy in their daily routine and also at the weekend with us.

Even yesterday Milo (and his sweet tooth!) saw a pack of yoghurts in the fridge. He took them out and placed them in our hands as a way of requesting their opening. We said “Milo wants some Yoghurt”, and emphasised Yoghurt… He then repeated in his mumbled sounds what sounded to us as parents, Yoghurt! His first couple of weeks in PALS hasn’t suddenly made him communicative, but his willingness to now try new foods (he would never have tried yoghurt before) as well as an ability to repeat and mimic our key words is amazing. Whether he connected with us or not at the time is irrelevant to us as parents; the fact that for those few minutes we were all on the same level and enjoying the yoghurt was awesome.

Milo doesn’t have a lot of words but he does mumble a lot. The one relatively clear repeated word routine he does have is “5, 4, 3, 2, 1….. Blast Off!!!” I love when he enters this verbal routine. I can grab him and mimic his own blast off from the floor, and he loves that I am completely in his zone as to the subject matter of his brain and play topic.

For the majority of the last four years I too have felt like we were counting backwards and regressing with the twins but recently I do feel as if they have been building to a take off in their capability. Their work in PALS preschool has really unlocked a new horizon of opportunity for the twins and I now too feel that it is time for “Blast Off”… Not only for the twins in what they can now achieve but also for our family and what we all can now plan for in the coming years.

#BlastOff


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What is Normal?

I had the enormous pleasure of attending a fantastic wedding yesterday of a lifelong friend of mine to his fantastic bride. This friend of mine has an unnerving understanding of who I am and what my behaviours are…. Even the ones that I am not consciously aware of!! I had always taken solace in the fact that I can banter back in that I know him just as closely; but yesterday’s wedding brought a new level of insight into his observation of me as a person.

Throughout school and subsequently our adult life, he would forever be telling me to stop tapping or making noise. I would be oblivious to the fact that I would be constantly drumming my fingers on the school desk or bar top, or worse would be unconsciously trying to recreate a full symphony sound experience on the house patio!! He is always spoken of as a “perennial moaner” so I had ignored his observations as him just being too “sensitive”!! I also am reminded of the fact that I have been told off by my wife of not making “eye contact” with people in public (waiters, hotel receptionists, bar staff).

I have always shrugged these overly critical comments (!!!) as just that and carried on regardless, however my recent experiences with the twins has made me revisit comments and observations of friends and loved ones all the way through my life…. And it has made me ask myself the question; Am I Autistic?

It would be very convenient for me to say “Yes”. That would help me explain my twins (although not my Beautiful 5 yr old Maisie) and it would in my mind allow my wife to blame me for giving her autistic babies… However, that would do a disservice to my wife, my children and to every parent of children with ASD.

The question is not what is Autism the question is “What is Normal?”

I do display many traits of ASD, but am not autistic. To most parents surprise if they look microscopically enough, all children can be found in any given moment to have displayed a trait of ASD. Perhaps it was not speaking at a given month, or it was not making eye contact at the correct milestone. These are all important milestones to be checked for sure; however I have heard too many parents jump to the extreme conclusion at the very first sign of an ASD trait. Google is a fantastic gift for our generation; but it is also a terrific burden in the worry it delivers directly to all of us whenever we suspect a deficiency in ourselves or a loved one.

Parents should trust themselves more. Parents know their children more than anybody. I also believe that mothers are better diagnostic machines than any doctor or medical device. Yet, why don’t mothers trust their instincts more?? Autism affects the brain of children in terms of wiring and perspective. Unruly children are not simply autistic. Bored children are not simply autistic.Non Verbal at two and a half years does not equal Autism. Autism is a perspective on the world. It is a way of life

These beautiful autistic children see the world in a wonderful light that we “normal” people never will. Bonnie runs through the house delighted playing with her Disney and Dora dolls in a world of her own. Milo laughs at the most inappropriate times and is in a world of his own. Yet they are 100% happy in their surrounding of love and attention. Is this not “normal”?

Any parent with any concern about the developmental milestones of their child should first ask themselves, have I left my child in no doubt that I love them? Have I embraced their craziness and shown them my level of empathy and understanding of how they view the world?

Despite all our challenges and issues, we need to make sure that we all still clearly communicate our  love for each other throughout and remember that there is no “normal”. My twins don’t understand when I or my wife shower them with hugs, kisses and statements of love; but that won’t stop us! We believe that it all registers. If we don’t a visible reaction, fine. However, there is a part of them that feels love; and that is all we can do. Make them feel love.

If we were not all crazy (i.e. different from the norm) then this would be a very boring world to live in! So embrace your children, your loved ones and extended network for what they are…Crazy! Embrace and love them in a visible, tangible and intimate way.You will find a more enjoyable experience by not being “normal” than by trying to avoid the crazy!!


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Parenting

For those of you who keep up to speed on the latest US Celebrity News or US Sports (as I do!), you may have come across the story this past week of Adrian Peterson, and the abhorrent abuse of his poor 4 year old son (Link: Adrian Peterson Indicted). I have no inclination to discuss or debate what is a despicable and clear case of child abuse, but watching the current debate in America that has grown out of this incident; it does make me wonder about that age old nature or nurture debate – particularly with regards the role or being a parent.

I heard my wife this week refer to an article she had read where being a parent to a child with Autism is akin to “parenting on steroids”. This reminded me of the typical reaction I witnessed a few years ago when people found out we were lucky enough to be having twins in the first instance. Their look of congratulations quite quickly dissolved into a look of soft pity and incredulity at the prospect of trying to manage twins and an older sibling all at once. I won’t lie and say it’s easy but when you know no other way; the question of your parenting task being harder than that of a couple with only one child doesn’t arise. Ever

We all deal with what opportunities and challenges that life presents us with, and being a parent is no different. There is no manual handed out at the hospital with your baby that outlines how to be a parent (if only there was!). You just deal with the task in hand with all the love and compassion and frustration and tiredness that only a new parent can appreciate. If that child has autism or a love of sleeping through the night from 10 weeks, is of no consequence to the fact that you still have to parent in as best a manner as you can. It is true that being a parent of autistic twins presents unique challenges as a parent in a lot of ways, mostly in the fact that there is no experience base upon which to draw. I can’t ask my parents how they handled a situation of dealing with autistic twins not sleeping at night & destroying their beds to pieces, as there is no shared knowledge. However, your love and enjoyment of your child is your guiding principle at all times.

I do believe however, that whilst we all as parents will carry on regardless of the challenges we face; there is a need to be more open about these challenges. It shouldn’t be seen as weakness or the case that one person is a better parent than the other. Particularly for men, they should talk more openly about how hard it is to be a parent. Most men (and maybe some mothers too!) view the infant/baby years as the real challenge, and then once they can dress and feed themselves that the challenge is over. Looking ahead at the next 10/20/30 years, I don’t now see the challenge abating; but rather morphing into more and more complex challenges for my children and for my wife and I in helping them overcome and progress successfully in their lives.

Regardless of your child’s characteristics we will all face those moments where it feels like we are “parenting on steroids”. The key for all of us is to remain confident in the reality that those moments will pass, we all go through them and if anything they will help prepare for the next parenting challenge by building up our experience base and nurture our parenting capabilities!!


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New Beginnings

We had been having an outstanding summer here in Ireland this year…. Well by our standards at least! However, in the last week or so, it was literally as though the switch had been flicked from summer to autumn (or winter even!). It has reminded me of the cyclical nature of our weather and how fast change comes to our daily routines. In the past week I have been uniquely positioned to view this transition as on Friday my dad has retired from work and my eldest daughter starts school; and the twins start specialist pre-school.

This cyclical overlap of life is particularly stark in that we often here people retiring being told “It’s the start of the rest of your life” and in the same way, parents of children starting school are told “You won’t know yourself with the freedom. That’s them now off to school, college and married before you know it…” To this end we have been putting labels on uniforms and new tracksuits, as well as laying out new school bags and lunch boxes ahead of tomorrow like many parents out there. We are acutely aware however that many parents of young children who may be suspected of ASD may not be sending their children to one of these schools or HSE units in the morning as they are still waiting on an official diagnosis and home tuition grant allocation. We are lucky. Our twins are lucky. And to any parent waiting for an Assessment of Need diagnosis, my heart goes out to you. But you have to keep fighting for it

We have had many well wishes with our eldest starting school in the morning, and many ooohs and awwws as they imagine Maisie in her first school uniform and moving from a baby to a young girl. At the same time people have expressed relief at the twins beginning their placement in the morning, but this optimism I feel is rooted in a misguided belief that tomorrow is the start of their “cure”. That tomorrow and their placement in a specialist pre-school unit is the beginning of the solution to their autism. 

I don’t bear any ill will to this belief, nor do I argue with our closest circle who feel this way. Before this experience with the the twins, I would have felt the same way. However, now I think differently. Our twins are autistic and will always be. Autism or ASD is not an illness to which seeks a cure. We would not look at a gifted athlete in school who possesses athletic prowess but cannot meet any academic standards appropriate to their age as sick. We would instead see them as athletic individuals who aren’t suited to a classroom environment. “they don’t learn in the classroom. They learn by doing….”

Our autistic twins are the same. They learn through routine and by doing. Through repetition. Through play. Through cause and effect. Should they be discriminated against in their education any more than the gifted athlete who plays for the school team or the difficult individual that earns the school top grades?

The new beginning that I hope tomorrow brings for our twins is one of communication. I don’t want to change my children. What I would love though is to be able to communicate, and for others to be able to communicate, with my twins. They play with our eldest daughter in limited ways so far; but if I was to walk in on the three of them on the sitting room floor playing some games it would be beyond a new beginning. It would be a revelation!

 


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Personality

Each and every one of us is unique. Some of us grow up great at sport or “have a head for numbers”; but even though we are conscious of these comments, we never really dig under the skin of what they mean. These characteristics span physical traits as well as internal dimensions. The nature/nurture debate is ongoing but when it comes to children with Autism, it is a debate that in the early stages of diagnosis moves from important to (quite quickly) irrelevant…. 

My wife and I always joke that our three children are crazy, and more often than not, that our eldest daughter (who is “normal”) is the most crazy in her behaviour, attitude and demeanour. I love that all our kids are crazy. Who wants to be normal??! I remember a long time ago on a school bus trip, a school friend when we were discussing another local kid remarked; “he’s harmless. I’d hate to be called harmless”… At 13 years old I didn’t peg my friend for a philosopher (I still don’t!) but in hindsight I absolutely share this outlook. 

Our twins are crazy. But they are being true to themselves. I couldn’t even imagine them any other way. When I knew we were having a boy, my mind absolutely raced ahead of itself and as an avid rugby fan who played rugby from the age of 5, pictured watching my son on a saturday morning playing rugby and revelling in the mud and muck and rugby. There is part of me that will always dream of that for Milo, but that is not who he is. He is an incredible young guy who loves the rough and tumble of play that only a dad can give his son, but my dreams of him running onto Lansdowne Road for Ireland will probably remain just that (although I will hold onto to that dream a little while longer if its ok!!). When we play tickle and chasing, there is more joy in his eyes looking at me than there ever would be if he pulled on the green jersey in Lansdowne Road. And I feel privileged that I get to experience that every day as opposed to anything else.

The twins complement each other in a scary kind of way. Milo loves sweet and Bonnie loves savoury. He loves constant motion yet Bonnie loves quiet compact solitude. He loves playgrounds and she loves going for coffee with her mum. They are the embodiment of yin & yang. Yet they make complete sense together as a pair. They now share a double bed in an effort to avoid the injuries that were arising, and they are delighted at night with being so close to each other and they delight in each others unique behaviour (there is a regular two to three hour comedy festival on in their bedroom each night if the giggles and noises are to be believed!).

Their unique personalities and behaviours shape them now and will continue to determine the adults that they will become. Their personality also shapes the people that my wife, our eldest daughter, our families, our friends and I will become. They have enriched all our lives and have also dispelled the myth that we all grow up with of what is a normal life. There was a recent article on a possible cause of autism being linked with excess synapses in the brain and a possible cure for this http://bit.ly/1lqzLkn. Whilst all advances in the field of autism are to be welcomed, and any therapies which may help individuals and their families would be like hitting the lottery. However, it is important I feel to not let the idea of a “cure for autism” to propagate.

Autism (ASD) is not a disease nor is it an illness. We are all individuals and we all grow up differently in unique adults. Children on the ASD spectrum are no different. I feel that the notion of a “normal life” is the disease which we need a cure for amongst the public conscience. There is no such thing. Everybody has their struggles, challenges and opportunities for growth. What defines us all is how we address these challenges and opportunities. My 3 and 1/2 year old twins are confronting their challenges every day. My wife and I will do everything we possibly can to aid them and our other daughter to be all that they can be; regardless of what that looks like in twenty years. All parents should adopt a similar outlook I feel with their kids. Our kids do not deserve our baggage or vicarious dreams of Lansdowne Road playing for Ireland. Let them make their own way and their own path in life….

Our twins are who they are. They amaze, frustrate, annoy, entertain and confound in every action that they take. But every time they look at us and smile….. All else dissolves away… 

 


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Communication

Communication takes many forms. All animals and human beings communicate to each other in a variety of words, sounds, text and signs. I have just been upstairs on a Friday evening at 9pm to attempt to quieten my autistic 3 ½ year old twins (a regular occurrence as many others will be all too aware…) when as I repeated my ask for them to go to sleep, my daughter Bonnie looked up and said “I can’t”; to which I managed to reply “Why not?” and she replied “yum yum” and rubbed her belly.

This may appear to be the routine back and forth baby talk that every parent experiences; however, I am beyond tears right now as I type, as this is a monumental breakthrough for my daughter. My wife and I have taken care of every detail of their lives to date, and despite their persistence not to acknowledge my wife by name in those 3 ½ years, I had taken solace in the fact that they do at least mumble my name in various forms from time to time (usually a peculiar form beginning with a “Y” and shouted in a short burst along the lines of “YADDY”… But sure, we’ll take what we can get! J). However, to have even this short dialogue in “word form” with my daughter has reduced me to tears because it is a breakthrough.

As other parents of autistic children will be all too aware, communication and recognition of others roles and social bonds is very seldom to the fore with our beautiful children. When I replied to Bonnie that I would get her toast for her hunger, the immediate illumination in her eyes and gleaming from her gummy toothed smile as she recognised that I understood her, was more than enough payback for all the endless hours of care and attention that she and her bruiser of a brother have demanded of me (and their mother of course!).

Society has taught us that to be able to communicate is to be able to progress through primary and secondary school learning English, Irish and A.N. Other foreign language… In our everyday lives to come across another adult or child who cannot answer or understand you usually brings frustration and for some poor individuals, xenophobic reactions. Yet my beautiful twins and their elder sister communicate in a way that is on a higher plane to what we or society deem “communication”. When the twins are in their shared room at night, they come alive. We have watched them through cracks in the door and seen them play, touch, communicate and enjoy each other’s company in a way that we just haven’t had the privilege of seeing “downstairs” yet… But, we will.

Yes, the twins have communication and socialisation challenges. They always will. But who are we to place labels on two beautiful, loving and adventurous 3 ½ year old twins? Why should they have to pay the price of our societal norms built up over hundreds of years? And why Mr. Kenny, Mrs. Burton, Mr. Varadkar et al. should my twins and countless numbers of other children have to both endure society’s labels and disposition towards them whilst at the same time have to suffer a lack of resources or assistance to help advance their capabilities in an effort for them to realise their full potential.

I must admit I was never a cynic, or really that civic minded growing up or as a twenty-something, but to live in a country where the youngest and most vulnerable amongst us bears cuts to their aid so that German bank shareholders can avoid a loss on their risky investments; or to save the hardship for the multitude of millionaires in this country who enjoy free travel schemes and manage to get their children grants for higher education as self-employed people…. Where is the equity or sense in that?

I will continue to battle with my Wife to ensure that our twins get as much assistance as possible, and we are both only too aware that other parents in our similar or worse situation are still waiting on Clinical Assessment of Need sessions in order to access what is left of our public health system… However, what we and countless other parents would deem a basic element of human civility let alone their public representative duty as democratically elected politicians (of all parties and alliances) is that they would communicate to us why we live in a country where our most vulnerable children must bear the brunt of other people’s largesse and irresponsibility.

The twins are starting to quieten down for now… It’s strange how we become accustomed so quickly to sounds in the room above us and learn to discern the different noises and to what they communicate… Oh, there’s a bed overturned; I’ll have to leave it there! 🙂


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Parents need GRIT!

I have been away from home with work for a few days this week, and have been utilising face time to keep in as much physical contact as I can with the family at home. On one of these calls home, Milo came into view and upon hearing my voice and seeing me on the screen spontaneously waved and said “hi Daddy” in his faint voice & manner. It was the first time he had directly and spontaneously engaged this way by using my name… And it knocked me over.

Indeed over the last few weeks his speech and vocabulary has been coming on in leaps and bounds. It remains faint and at times indiscernible to others other than my wife and I, but what it lacks in volume it more than delivers in impact and meaning for us both. He has always been a cautious child, faint in voice and action. Where his sister would bound up and down steps in the garden from the time they could walk, Milo would always test the step first with one foot and a hand on the doorframe!

It can be hard as parents of any child, ASD or otherwise, to make the right calls for your children when it comes to education, activities and what is deemed to be “appropriate development”. On our time away this week in work I was party to conversations with colleagues where we discussed at what age it was appropriate to let our children out to play on the road by themselves? At what age should we try and encourage their sporting or musical ambitions? What club in the area is the best? What if I make a mistake now by sending them to the wrong teacher and they never forgive me in later years? What if I never forgive myself??

It is the hidden bonus that children bring their parents; an innate skill at making you question every decision, your very core values and innate capabilities in a way that a friend, colleague or partner ever could!

These changes and improvements in Milo’s abilities to communicate we ascribe to recent SLT programme that we sourced privately for both Milo and Bonnie. To think that such a brief interaction with a SLT professional over a short number of weeks could deliver such a transformation at times makes me question my sanity and abilities of logical reasoning. However, we have to believe that our actions and decisions as parents are having such a positive impact.

I have taken strength recently from the work of Angela Duckworth who has exposed a new dimension to the world of performance and ability across sport, education and business; that of the power of GRIT

Angela Duckworth TED Talk

She defines GRIT as “sticking with things over the very long term until you master them”. Interestingly for me she writes in her research GRIT: Perseverance and Passion for Long Term Goals that “the gritty individual approaches achievement as a marathon: his or her advantage is stamina”.

I find this way of thinking inspirational for my career, for the team that I manage and colleagues I work with as well as my family and friends. When I think of the recent improvements in Milo’s speech and direct communication capability, it is hard to know exactly why he has improved. Maybe he would have improved regardless of our and his efforts. However, I believe that it in the relentless efforts of his mother and all of our family that these improvements have been borne out. In Professor Duckworth’s research she identified that it is not pure intelligence alone that delivers success but rather intelligence hand in hand with grit. For Milo there is no silver bullet of treatment, but rather the determined and passionate efforts of all of us together even in the face of set backs that will equal success for him in later years.

Every parent should focus on getting “grittier” in their lives. Our children are our greatest gift, but they are also our greatest challenge. They are far greater a challenge than any personal goal business or otherwise. Don’t let those moments of doubt in your planned course of action, take momentum out of your efforts. Stick to it! Dig Deep! Get More GRIT!!