Yesterday I shared a speech I'd delivered a few months ago which covered among many other things the things that alerted me to investigating the development of my J (who at the time of the speech was the only one of my children to have an Autism diagnosis but of course we now know that Hunter also has a similar diagnosis).
Those who follow my blog will know I am the writer and creator of My Special Story Books for Special Kids http//myspecialstory.weebly.com and that the books I write highlight that our kids are so so much more than their diagnosis.
After yesterday's long post outlining the whole life story and the journey we took as a family to wind up here I thought I'd keep this post simple and as short as humanly possible for a waffler like me. J's diagnosis changed our lives as a family on the 8th of August 2008 (080808). A date I'll never forget. Who were we before then? Who was he before then? Who were we all on 070808? Who did we become 090808? A piece of paper with the word Autism written on it by a childhood development "expert" had redefined us all, not just my beautiful boy. I didn't know much more about Autism back then aside from the stereotypes we are all familiar with like Rainman for example. Obviously I know more than Rainman now and because I realised my children are totally different to Rainman and the boy in the movie, The Black Balloon and any other film made about Autism, I created my stories to raise awareness that ALL children are different.
In line with the books I love to write for the kids I love to write for I am going to list all the things that make my boys who they are outside of their diagnosis.
J is a hurricane of energy, noise, enthusiasm and noise... Did I say noise? He loves to run, climb, dance, jump, slide, yell and tackle life in a blur of activity and speed. He loves his trampoline, his computer and Thomas the Tank Engine. Although I suspect he is starting to grow out of kind, affable and gentle Thomas as I notice a developing interest in the old fashioned cartoons emerging.... I think Scooby Doo and Tom and Jerry may just be the new favourite shows of choice these days and Thomas only gets a sneaky look in when my J feels a little bit anxious after a busy day at preschool and needs the slow and steady style of kind accepting Thomas always triumphing over the troubles and tribulations of a day on Sodor. Obviously he is a very wise boy who knows just what he needs when looking for a metaphor for life if things have been a bit difficult to understand over the day for him in his world of confusion about the social politics amongst the other small folk he goes to preschool with.
J is bossy in very charming and endearing way that makes no sense but I assure you is true. He wraps women (even the smaller preschool variety) around his long, fine fingers that reside on his lean and lanky little boy's body with a mass of dark curls on the top of his very pretty head and the widest smile in the land. He is joyful, funny and very very clever.
Right at this second he is on top of the dining room table which he of course climbed upon in his bashing and crashing style and directing orders from atop his self proclaimed "mountain" because he "is king of the castle" in his imaginary game he is playing with his little brother who has been deemed a lowly pleb who is only allowed to enter the pretend castle after performing a myriad of peasant duties like fetching Daddy's cap to put on J's head as the crown for the game among other things.
Which brings me to H. Ah my H. He is such a complicated cat. I blogged about his emerging independence a few days ago so have a look here to find out more about that. For the most part H is a shy boy with big brown eyes and fine light curls that make him look angelic which pretty much allows him to get away with ANYTHING! This child looks like butter would not melt in his mouth and he knows it. It is impossible to fathom that he could ever be "naughty" which is exactly why he is so talented at being just that and making everybody who witnesses it giggle with delight when he does too in a proud moment of getting away with EVERYTHING.
H loves climbing, riding his trike down our hill, cuddles, his teddy, his soft toy bunny and most of all he LOVES loves loves LOVES Sam, Anthony, Murray (Muwway as he says it) and Jeff. H LOVES The Wiggles. Between fetching crowns for his brothers royal head and bringing various snacks to King Jackson, Hunter is dancing and singing along to the musical stylings of The Wiggles with great gusto and obvious adoration.
It's been such a lovely relaxed morning observing them being who they are through my eyes that see beyond a label. I truly hope that by raising awareness more people will try and look a bit deeper through their eyes too.
So I'll wrap it up now and say a quick apology for waffling again and not keeping this short as promised. That's what makes my boys so much more than their diagnoses. That's what makes them unique, different and anything but a label.
Uh oh..... Poor peasant H is being threatened with exile from the kingdom now as it seems King J has not received the latest request of his fiddlers three or whatever other equally impossible desire in a kingly or timely fashion......... Just a pair of typical brothers really.
Looks like the Kingdom needs to appoint a diplomat in the form of a Mummy to sort out citizen relations.
Bye for now. :-)
Tuesday, February 23, 2010
Monday, February 22, 2010
The truth, the whole truth and nothing but the truth so help me.......??
I'm cheating tonight and posting something I've already shared via my facebook page but I was asked the question today that many people ask me which is, "What were the signs that you saw with J that pushed you to investigate further?"
I thought the best way to share the signs I saw and the whole story about our family's journey would simply be to post this speech I was asked to give about unexpected outcomes in pregnancy, birth and motherhood at the Doula College www.australiandoulacollege.com.au I once attended when I was training to become a doula/birth attendant. Apparently the director of the course felt I had some experience in all of these areas. :-)
I wrote this speech before H was diagnosed with Autism/Aspergers. At the time, only J had been diagnosed.
It's very very very long as I was asked to speak during a 4 hour lesson of which I was to take up approximately half of the time. I prepared this piece for the lesson but wound up mostly ad libbing on the day. This piece is the basis of what I talked about but on the day I added bits in and inevitably left bits out. It is aimed at women learning about pregnancy and birth but is not full of jargon the general public would not be familiar with.
I know some of you have heard parts of this same old same old story of mine many times before. sorry for the repetition but the girls I was addressing that day had not met me before so they heard it all in all it's glory). :-)
It's personal. But only for me.
It's controversial and it's very very open and honest but then again so am I.
Everything expressed is simply my own experience and my own thoughts and pondering. It was not written in the spirit of judgment or with any intent to attack anyone else's views or beliefs. Enjoy and strap yourself in:
Good morning girls, Thanks for having me here today, I am Chantelle.
I am also angry.
I am sad. I am aghast. I am offended which is rare for me as not much offends me at all.
A friend sought my advice today. Nothing wrong with that, it’s usually flattering when someone values your opinion enough to ask for advice. I generally welcome questions about my life and am very open. I am often asked about pregnancy related matters because I am a trained (but not practicing at this time) doula, (which is a birth attendant who supports the birthing mother throughout pregnancy and labour). I am also often asked about Autism as my son is diagnosed with Autistic Spectrum Disorder. I have no issue with answering questions about either of these topics and am actually passionate about raising awareness about people living with Autism as anyone who knows me would already know. Why do I always drone on and on like a broken record about Autism and children with special needs? Because, clearly there is much more work to be done in raising awareness and understanding.
The conversation I had today made this alarmingly clear and drifted into an area I had enormous trouble staying neutral on. Today the boundaries were blurred and a line was crossed. Albeit unknowingly by the other party but nonetheless it was crossed. At least a line I had previously unconsciously drawn in the sand was crossed I thought.
I have a friend who is planning another baby and was asking advice about natural fertility options. As we chatted away the conversation moved towards her age. My friend is not old by any standards but in today’s medicalised pregnancy and birth business (yes, make no mistake, it’s a business) anyone over 35 is considered at an “advanced maternal" and "at risk” age. The language surrounding pregnant women and birth is a topic I like reading and talking about as many years ago I had a stillborn baby at around 21 weeks of pregnancy and the language doctors and other medical “professionals” ..... I am using language very loosely when I use the word professional about that experience.... Well anyway, the language the medical staff used after the loss of my baby was appalling. My baby, my deceased daughter who I named Ava Maree was described as a specimen, a fetus and a spontaneous abortion among other insensitive terms whilst I was placed in the maternity ward with no baby but having still experienced labour. The language used about my baby was thoughtless, cold and clinical. Pregnancy, childbirth and motherhood are none of these things and birthing a stillborn baby is also none of these things. Language used around expectant and new mothers is a powerful force in how they feel about themselves and the process of bonding with their baby whether living or not.
Even when the outcome in childbirth is unexpected such as a stillbirth occurring or a disability being detected early, the mother and baby deserve respect, understanding and compassion. Insensitive, cold and clinical? No room for such language in such a highly emotive situation. Compassion is surely not too much to ask for women in any pregnancy or childbirth situation and particularly in one where the baby did not survive.
I am not talking about holding hands, offering an eternal shoulder or buying flowers here.
An ear and a nod of understanding is far more appreciated than the biggest bunch of flowers bought from the most expensive florist and sent via a courier to avoid the look in the eyes of a mother in mourning. An ear and a nod. Listen. Just listen. Most people have a very hard time looking into those grieving eyes. It takes a strength from within. It is hard indeed to listen to someone in such pain. But I would ask you to simply try to listen or even simply give the opportunity to listen if the pain is too great to talk about for the grieving mother. The act of listening is the greatest and most valuable gift that not many are equipped to give in such a situation. If there is no talking....... Look into those pained eyes and listen with your own eyes. She (the mother) will remember that gift long after all the flowers delivered by all the couriers are withered and thrown away. Trust me.
So back to the conversation with my friend planning another baby....
The conversation drifted around to her advanced maternal age and the tests offered to women at high risk, like herself (according to the doctor’s language, not mine) who will surely need a battery of tests when she conceives this carefully planned baby. My friend blissfully oblivious to the offense she caused me during the conversation stated she is not at all worried about having a child with something wrong with them as the doctors will send her for all the tests to rule out any genetic problems anyway. She had already decided she would not continue a pregnancy if the child had something wrong with it (her language, not mine). She did not want a child with problems and waxed lyrically about the advancement of the medical profession and how wonderful it is now that those sorts of problems can be detected and dealt with and the best course of action can be decided upon accordingly (again, her language, not mine). She also stated she and hubby had discussed how awful my own situation was with my boy, J’s problems and that they would never cope in the same situation because God chooses the special parents to give special kids to and they did not feel that they could live up to the enormous task of raising a child who had something wrong with it. She always wondered, she said, about why I had an amnio centesis procedure during H’s pregnancy but not during J’s and was it because I was older when I was pregnant with H and needed one then? Was I angry that I had not had a test with J? I could have found out he had problems then, she said, if I had have had the tests. I am positive anyone still reading along here will get the gist that her line of questioning might be a little out of order and possibly not well thought out.
Now after I bit my tongue for what seemed like an eternity and I had counted to around a million in my head I decided I could either use this moment as a teaching one or....... do a toxic friend audit there and then. I chose the option to enlighten a previously unaware friend that the battery of tests she was so keen to subject herself and the baby to when she does actually conceive does not necessarily detect all the “problems” (thought best to stick with the language she understood) she was worried about.
Calmly I explained there is currently no genetic testing available for Autism and that, no I am not angry about that at all, nor should she worry about how I cope in my very much NOT awful “situation.” I am actually very much relieved believe it or not that there is no such prenatal testing and that I did NOT have to endure the agony of trying to decide what the “best” course of action would have been if such a test did exist and picked up a “problem” with J. I explained I did have some genetic testing with H and that yes partially it was advised because of my age and that a previous ultrasound had picked up an issue worth investigating with H but that throughout the process I never really sat well with even having the test but felt a bit bullied into it by the medical people. I explained I had pondered the outcome of that test and in retrospect have no idea why I agreed to it in the end as I was not going to take any “course of action” in that pregnancy. I had experienced loss with my stillborn daughter and knew the crushing pain of such loss well. I had decided whatever the outcome of the test I would go ahead with the pregnancy but use the results as a learning tool about what might be ahead rather than as a maker or breaker on any difficult decisions. If H did have a genetic issue I was willing to deal with it. I’d lost a baby with a chromosomal anomaly and if I had another baby on board considered widely as not perfect then fine with me. I also expressed my feelings about that trite, useless and inaccurate platitude us special needs mums get all the time... God gives the special kids to the special parents..... Look, if that is the best bit of language someone can come up with when you find out someone's child does indeed have a “problem” according to society then fair enough as again, it is a very difficult conversation to have if you have not walked a similar mile to the parent in the recent post diagnosis period but please.... I beg the reader or the listener one thing......
Do not give me (this is different for everyone, I am only talking about me here) a lesson in religion or your philosophical views on why my number came up in what is pretty much the lottery or crap shoot of life and living. I am not a Christian or subscriber to any faith in fact so this saying does not bring any comfort to me personally at all but even putting the presumptive nature of telling me God has chosen me aside, it is not true for me. It is not what I believe. I can assure you I have seen many parents who in my opinion are definitely NOT special who have been given what some choose to see as the gift and others choose to see as the burden of a child with additional needs and disabilities. I was not chosen nor did I choose my current lot in life. I made many plans and chose many things over the course of living my life whilst my life happened around me and led me here. No one chooses the child they will birth however the majority of us get the exact one we wanted somehow whether you know they are going to be born with additional needs or not. That is the nature of parenthood. The overwhelming and unconditional love for your child. Your child. Your child whether born with “problems” or not. The love is the same. Again... Trust me.
So there I was in my mind whilst having this conversation... My mind took me back. I was back in the period of my life where I was waiting for a test I was not sure I wanted to have to find out if there was something wrong with my baby (society’s language, not mine). I had to wonder and still do why we bother testing for these things anyway? We can now select which disabilities we are willing to live with if there is a test to detect them prenatally. I wondered why we are now in this medically pushed position of being able to say no to Down Syndrome and a host of other chromosomal issues but we take our chances with hearing impairment, vision impairment and a wide array of other perceived disabilities that are not currently detectable through genetic testing?
I thought about saying no to this “type” of baby in the medical baby “shop” and choosing a different more perfect one and then getting it home and one day, the baby now grown into a young boy or girl and then the child you chose because of its perfection or normalcy has an accident and suffers neurological damage or paralysis or both. The old crap shoot of life thing rearing its head once more. The nagging feeling that nobody ever knows what is in the future anyway ate at me whilst waiting for these bloody tests. Why was I having them and what would I do with the information? The same friend who offended me today had many equally naive and uninformed comments back then too. I remember hearing her tell me about which problems she could handle if she knew the baby had them in advance and those she would terminate instantly over. Autism was one she mentioned. Autism was a deal breaker for her without question or hesitation. At the time I was ignorant about the nature of Autism and that it is a very wide spectrum and also ignorant to the infinite range of functioning levels and co morbid conditions that make up this spectrum (as with most special needs and diagnoses in fact). I was like the rest of the ignorant masses who had seen a movie about Autism and had a preconceived idea of what it looked like. I must admit when she brought Autism up as her deal breaker, my previously unwavering intention of continuing the pregnancy no matter what.......??????
Well I am honestly admitting my unwavering attitude wavered slightly at the mention of Autism. I flashed through pictures in my head of a loveless, violent and lost child who I could never reach. I wavered.
However.
I did not know then what I know now. I now know I could not live a minute without my J. Not a minute. Although the diagnosis is a huge part of our life as a family it is only a small part of him. He is my baby first and foremost and he is the exact baby I would wish for a million times over and over and over again. That's what I know now. That was a very unexpected lesson I had to learn that I could not possibly have known when I wavered.
During the period I was pregnant with H and undergoing these tests and pondering my feelings about the possibility of H being born with additional needs or problems as they seem to be universally known, I had no idea that J’s erratic behaviour including climbing on absolutely everything, running away with no sense of his own danger, a sudden lack of appetite and refusal of foods he had previously loved, a sudden loss of eye contact and language and a sudden loss of reciprocity or interest in my voice was the beginning of what I now refer to as the dark days. The tantrums I described as meltdowns long before I had entered the official world of Autism where it is used widely to describe what I could clearly see as a sensory and emotional overload but could not understand why it was happening and what nearly drove me to a breakdown. The isolation of feeling in my gut something had clearly changed but having no real concrete idea as to what it was and the feeling of thinking I must be a bad parent and/or insane was crippling. Absolutely crippling. I kept thinking I should be grateful I had this beautiful boy and another one on the way after losing my daughter all those years ago. I was guilt ridden that I had even contemplated something was awry with J or that I was now undergoing prenatal tests for this new baby coming when I should simply be grateful I was able to conceive so I thought!
I ignored those rumblings first sensing and then knowing that J had surely changed. I could not put my finger on it. I had so much to deal with I rationalised. I was suffering with hyperemesis Gravardium which is a condition specific to pregnancy and is basically vomiting 24/7 to the point of dehydration (I am unlucky enough to live with this during all my pregnancies for the full term of gestation), I have the stress of not knowing if the baby on the way has a genetic disorder and I am under extreme financial pressure. I rationalised my way out of dealing with what was right in front of me. I saw J’s development stop then shortly after take off again in what I can only describe as an unusual way. The other kids at playgroup were starting to use 2-3 word sentences, address their parents as “Mummy” and “Daddy” (which J did earlier than the other kids as with all of his milestones until he was 12 months and then lost many “skills” including the acknowledgment of names and following along in a favourite song by clapping or humming or singing a few keywords). J never called me “Mummy” anymore. He simply started taking my hand and leading me to things he wanted to play with but he didn’t play with them anymore. He no longer raced his cars along saying “vroom” he just looked at his chosen few toys from the corner of his eye and lined things up. He became aloof and did not smile for the camera anymore or clap along to baby games or do the actions to Five Little Ducks whilst singing “Quack, Quack, Quack” in the appropriate parts. It was gone. Lost. He still used words but was not developing sentences and only listed nouns. He could say any word really but only looked at items and named them aloud. He would walk in a room and give me an inventory of the furniture and fittings. “Chair, roof, floor, light.” He never said words like “more, stop or yes.” He never said “juice” or “drink” when he wanted one. He just took my hand or put himself near the item of desire and made a sound too hard to describe so I will have to demonstrate. A cross between a wail and a request. “Ah ah ah ah ah ah” and bounced up and down until I worked out via a process of elimination what the hell he wanted. Most of the time I got it right. When I didn’t, those meltdowns were ferocious. It became all too hard to even go to playgroup and drag him out of there on a weekly basis in meltdown mode for whatever mystery reason he had on the day for losing it.
I did the tests with H in utero around this time and Hooray! Celebrations were in order. The tests came back "NORMAL!" (Even I was guilty of using that language at that piece of news). The new baby would be totally "fine" and was clear of any genetic disorders so I could relax now and try and sort out Jackson’s behaviour that had gotten so out of hand I thought whilst I was distracted with all the other things I had on my enormous plate of life.
I could be one of those happy pregnant women and prepare for the arrival of my new perfect baby you would pick for yourself in that imaginary medical baby shop. Life was great.
Oh no it wasn’t.
J became increasingly difficult to manage my pregnancy was wearing me out (I should probably make mention here that my babies are basically enormous. I don’t do anything under 10 pounds when it comes to my babies and my body is worse for wear by the time labour rolls around so the last month or so is a miserable experience indeed).
Beautiful "normal", "perfect" H arrived in a hell of a hurry one night in January after a total of 55 minutes of the most intense and excruciating physical pain I have ever experienced and though I had plans of a beautiful and natural calm birth, I screamed for an epidural as loud as I could but to no avail as H was not waiting for an anaethetist to arrive and he entered the crazy world he was born into amidst a chaotic and loud birthing suite with a frazzled doctor struggling to get his gloves and gown on in time, a midwife yelling instructions to anyone with a set of ears, a stunned father not at all sure what just happened in the rush, a doula (my sister) who fell in love with big bouncing baby H on first sight and a wailing mother who was very much in shock over the unbelievable ride we had all just been on during the most unexpected labour I could have ever imagined.
The labour and birth experience was so different with H than the one I had with J who took his time coming into the world due to so many interruptions during the birthing process. I was ready to receive H and the process of birthing him and was very clear about the medical staff leaving our family alone as much as possible during H’s birth so I could concentrate on the work at hand to bring this baby into the world. I knew more about the process of birth and the sanctity of the birthing mother’s space this time. I was frightened of birth and labour when J was on his way so the labour was interrupted, slow and many interventions were used to help him come out and meet us.
Interruptions: Constant monitoring of foetal heart rate, visits from doctors, midwives, family members and....... wait for it....... gulp..... The in laws!!!! I was not happy about being interrupted by the in laws who popped down for a visit in the birthing suite at all. TRUST ME!!! I felt we were being interrupted by anyone passing through Wahronga that day as it seemed like they were all in the room waiting for me to don the stirrups and start pushing!
Interventions: Gas, Epidural, Ventouse. It is ironic this child was receiving intervention even during the birthing process when I look back. His whole life revolves around that damned word these days. Intervention. Ironic.
Both my babies births are ironic when I think about it. J's so full of interruptions to what is usually a naturally occurring process and intervention after intervention throughout just like his early childhood has so far been and then there's H. Wow. As I said, born into chaos, confusion and noise. Born whilst I was screaming for pain relief but not heard and the pace far too quick for action anyway. If ever there were babies that have lived the early years representative to the birth experience, mine are it. :-)
The two labours could not have been more different but I was lucky enough to be one of those mums who just instantly connected and bonds with her babies. They are like a magic magnet made just for me. The force of our connection is the most powerful feeling I have ever experienced and continue experiencing as a permanent state of my being.
Even though connected I was still feeling an unexplainable distance and shift in J during these early days of H’s life. Again though, I ignored it and dismissed it as it was then that things really got hectic.
H was severely affected with silent gastric reflux (as was J) and was restless and unsettled all the time due to the pain. 2 days after H arrived home my husband developed viral meningitis and was rushed to hospital very very sick. Meningitis is very serious and takes many months and sometimes even years to recover from and in Andrew’s case he still suffers memory problems and some neurological issues even today coming up to two years since contracting it. We then had to move shortly after Andrew got home from the hospital so we had a new baby, a seriously ill “head of the household” an erratic, uncontrollable 2 year old and a new mum very much on the edge of sanity making up our family of 4.
I knew the erratic two year old was the biggest issue I had and could no longer rationalise his behaviour no matter how hard I tried to. I uttered out loud in a GP’s office the words I had swimming around my head too afraid to bring up in a medical situation previously..... “I think he is Autistic.” I’d been reading about it secretly for months. I’d brought it up with a friend at playgroup who was a teacher thinking she would know if he was Autistic for sure. She said no way. I’d brought it up very tentatively with Andrew months and months previous to this moment in the doctor’s office and he laughed it off saying I always diagnosed myself or family members with whatever condition Oprah had highlighted that day on her show. I’d brought it up with family members who all assured me he was fine. He was definitely not Autistic. I held my breath for the GP’s response. A doctor will know I thought. A doctor will surely know. “There is no way this child is Autistic, he looked me in the eye and talks. There is no way he is Autistic.” Strangely, I was not comforted by this rebuttal whilst I watched my son destroy the doctor’s office in a hyperactive and anxious frenzy then go into meltdown mode before both of our eyes. The doctor still insisted he could not be Autistic but he could be hyperactive. This was my trusted family doctor who had known me since I was three years old and I trusted him. I broke down. I sobbed. I begged him to refer me to take the whole family to a residential behaviour assistance program for kids called Tresillian or admit me to a psychiatric facility. I was distraught. I was totally desperate and broken.
He referred the family to Tresillian. www.tresillian.net
After a harrowing and extremely draining 5 days of meltdown hell, they confirmed that my J needed a developmental assessment, that I was not crazy and did not need to go to the psychiatric facility and that my instincts were most definitely on the money. They all but diagnosed him on the spot but could not overstep their boundaries and referred me to the next battery of tests I was to endure that year but this time with my child who had required none prenatally in utero at all. This was definitely not an expected outcome.
After another doctor, this time a pediatrician, dismissed our concerns about Autism we walked away feeling empty, unheard and really frustrated. My issues around language, listening and the need for an understanding nod appeared again as I sat gobsmacked by this doctor telling me Autism and Aspergers is simply the “flavour of the month and the new trendy diagnosis of choice for naughty or hyperactive kids.” He looked at my boy and after 10 minutes gave him an official diagnosis of severe ADHD and ODD (Oppositional Defiance Disorder) never once taking into account the numerous sensory issues I’d described, the loss of language and skills and the lack of reciprocity that had previously been there. Dismissed. Ignored and unheard. He handed me 2 separate prescriptions to get J to sleep at night and then keep him awake but calm during the day and said, “see you in six months when he’s calmed down a bit and more like a normal kid.”
Fed up, I caused a scene. I did not sob this time, I stood my ground and refused to be dismissed. I flung his prescriptions in his bin and have never had cause to use them once we found alternative therapies and interventions and eventually a beautiful and like minded pediatrician http://pymblegrove.com/practitioners/dr-antony-underwood who also practices as a homeopath who actually respected us..... and used non offensive language.... RARE. Very rare... TRUST ME. Before we got to that point of the journey, I still had to make my scene and cause hell in the original pediatrician's office so back to there...... I demanded a developmental assessment as I knew there was much more to it. I was finally heard. The developmental assessor was the one who eventually gave the diagnosis after months of waiting lists, frustration and mixed messages from many doctors and community based clinic nurses who actually told me J was a problem too big for them to handle and to not bring him back to the clinic checks as he needed a specialist.
Just post diagnosis, my trusty “frenemy” (cross between a friend and an enemy) who had and still has such strong views on what she deems as a problem that she would rather have had the knowledge to “deal with” during pregnancy was very vocal in her assurances about me being a chosen special one etc. I did not hear from her again for months. In fact I drifted apart from many friends. It was lonely. It still is some days but not as much anymore.
We are seeing real progress with J these days as most people in my circle of friends and family know, as I shout it from the rooftops hourly about how wonderful he is and how proud and grateful I am that he is developing, not “normally” but differently than your typical kid. Still he is developing though and what a brave, clever and truly wonderful boy he is. He calls me mummy again, he is not aloof, violent or lost at all. I can certainly reach him. He thrives on being accepted, understood and appreciated. He is warm, friendly, affectionate, funny and a host of other adjectives that basically mean he is loved and treasured for who he is. He loves his little brother and his little brother loves him back. Unexpected. I was ignorant to the reality of Autism and the lack of limits I had previously thought existed within that diagnosis. My boys are the lights of my life and if anyone had told me Autism could be anything other than a tragic outcome BEFORE I had lived it I would have thought they were crazy. Autism, and the joy I've found in J's language returning, J's reciprocity returning and the lesson learned to never ever take anything for granted, it turns out is the most unexpected outcome we've so far experienced.
I have thrown myself into my new unexpected life with gusto and embraced it with open arms as I feel there is no other way to truly support and nurture my children who are also living an unexpected life in most people’s eyes.
I am writing for an online Autism magazine about what I have spoken about today and other issues that come up day to day from the point of view of a besotted mum of two remarkable boys, one who happens to have a diagnosis of Autism and the other who is growing up in the maelstrom of what that diagnosis means in a family and how it affects the dynamics of everyday life.
I am happy and content for the most part even after experiencing so many unexpected outcomes in what was supposed to be a carefully planned life and occasionally like today I get angry, sad and shocked about a comment, an offhand remark or a conversation laden with insensitive language.
Next time you go to use a term like “that child/person has something wrong with them” or “that child has a problem” I would urge you to think about this.
Perhaps the only problem is ignorance and perhaps the only thing wrong is an overwhelmingly large proportion of society is lacking in understanding. Perhaps when you are referring to people, schools, outcomes, behaviour or anything as normal we should ask this question: WTF is normal anyway?
We do not refer to my son as having a problem or having something wrong with him. It is offensive. My son and many other children with additional needs are neurologically different & unique but when you think about it, so are we all whether we have a diagnosis to live with or not.
Perhaps I could have cut this down to three simple words without the need to tell you my life story but that would have made today’s topic of unexpected outcomes during pregnancy, birth and motherhood very short and you girls may not have come away with an understanding of why these three words are so important in your role as doulas and support people for the expectant, new or struggling mum. :-)
The three words I urge you to take away from today are these and please write them down:
“Mind your language.”
Thank you for “listening.” Listening....... now there is an important word too.
All the best and thanks again.
*****NOTE TO THE READER/LISTENER: I am not anti abortion and this is not a pro life or pro choice statement. This is my honest account of many feelings about my own life and my own choices and what led me to make them. These feelings were stirred up during a conversation that took me by surprise. I believe in the right to choose what is best for your own family, your own circumstances and your own situation. Not everyone has the same opinion or would make the same choices. I do not judge those who have made different choices than I have nor do I think we should all believe the same thing or live the same way. I like that we have freedom of choice and that we are all different. It would be boring if life was any other way.********
I thought the best way to share the signs I saw and the whole story about our family's journey would simply be to post this speech I was asked to give about unexpected outcomes in pregnancy, birth and motherhood at the Doula College www.australiandoulacollege.com.au I once attended when I was training to become a doula/birth attendant. Apparently the director of the course felt I had some experience in all of these areas. :-)
I wrote this speech before H was diagnosed with Autism/Aspergers. At the time, only J had been diagnosed.
It's very very very long as I was asked to speak during a 4 hour lesson of which I was to take up approximately half of the time. I prepared this piece for the lesson but wound up mostly ad libbing on the day. This piece is the basis of what I talked about but on the day I added bits in and inevitably left bits out. It is aimed at women learning about pregnancy and birth but is not full of jargon the general public would not be familiar with.
I know some of you have heard parts of this same old same old story of mine many times before. sorry for the repetition but the girls I was addressing that day had not met me before so they heard it all in all it's glory). :-)
It's personal. But only for me.
It's controversial and it's very very open and honest but then again so am I.
Everything expressed is simply my own experience and my own thoughts and pondering. It was not written in the spirit of judgment or with any intent to attack anyone else's views or beliefs. Enjoy and strap yourself in:
Good morning girls, Thanks for having me here today, I am Chantelle.
I am also angry.
I am sad. I am aghast. I am offended which is rare for me as not much offends me at all.
A friend sought my advice today. Nothing wrong with that, it’s usually flattering when someone values your opinion enough to ask for advice. I generally welcome questions about my life and am very open. I am often asked about pregnancy related matters because I am a trained (but not practicing at this time) doula, (which is a birth attendant who supports the birthing mother throughout pregnancy and labour). I am also often asked about Autism as my son is diagnosed with Autistic Spectrum Disorder. I have no issue with answering questions about either of these topics and am actually passionate about raising awareness about people living with Autism as anyone who knows me would already know. Why do I always drone on and on like a broken record about Autism and children with special needs? Because, clearly there is much more work to be done in raising awareness and understanding.
The conversation I had today made this alarmingly clear and drifted into an area I had enormous trouble staying neutral on. Today the boundaries were blurred and a line was crossed. Albeit unknowingly by the other party but nonetheless it was crossed. At least a line I had previously unconsciously drawn in the sand was crossed I thought.
I have a friend who is planning another baby and was asking advice about natural fertility options. As we chatted away the conversation moved towards her age. My friend is not old by any standards but in today’s medicalised pregnancy and birth business (yes, make no mistake, it’s a business) anyone over 35 is considered at an “advanced maternal" and "at risk” age. The language surrounding pregnant women and birth is a topic I like reading and talking about as many years ago I had a stillborn baby at around 21 weeks of pregnancy and the language doctors and other medical “professionals” ..... I am using language very loosely when I use the word professional about that experience.... Well anyway, the language the medical staff used after the loss of my baby was appalling. My baby, my deceased daughter who I named Ava Maree was described as a specimen, a fetus and a spontaneous abortion among other insensitive terms whilst I was placed in the maternity ward with no baby but having still experienced labour. The language used about my baby was thoughtless, cold and clinical. Pregnancy, childbirth and motherhood are none of these things and birthing a stillborn baby is also none of these things. Language used around expectant and new mothers is a powerful force in how they feel about themselves and the process of bonding with their baby whether living or not.
Even when the outcome in childbirth is unexpected such as a stillbirth occurring or a disability being detected early, the mother and baby deserve respect, understanding and compassion. Insensitive, cold and clinical? No room for such language in such a highly emotive situation. Compassion is surely not too much to ask for women in any pregnancy or childbirth situation and particularly in one where the baby did not survive.
I am not talking about holding hands, offering an eternal shoulder or buying flowers here.
An ear and a nod of understanding is far more appreciated than the biggest bunch of flowers bought from the most expensive florist and sent via a courier to avoid the look in the eyes of a mother in mourning. An ear and a nod. Listen. Just listen. Most people have a very hard time looking into those grieving eyes. It takes a strength from within. It is hard indeed to listen to someone in such pain. But I would ask you to simply try to listen or even simply give the opportunity to listen if the pain is too great to talk about for the grieving mother. The act of listening is the greatest and most valuable gift that not many are equipped to give in such a situation. If there is no talking....... Look into those pained eyes and listen with your own eyes. She (the mother) will remember that gift long after all the flowers delivered by all the couriers are withered and thrown away. Trust me.
So back to the conversation with my friend planning another baby....
The conversation drifted around to her advanced maternal age and the tests offered to women at high risk, like herself (according to the doctor’s language, not mine) who will surely need a battery of tests when she conceives this carefully planned baby. My friend blissfully oblivious to the offense she caused me during the conversation stated she is not at all worried about having a child with something wrong with them as the doctors will send her for all the tests to rule out any genetic problems anyway. She had already decided she would not continue a pregnancy if the child had something wrong with it (her language, not mine). She did not want a child with problems and waxed lyrically about the advancement of the medical profession and how wonderful it is now that those sorts of problems can be detected and dealt with and the best course of action can be decided upon accordingly (again, her language, not mine). She also stated she and hubby had discussed how awful my own situation was with my boy, J’s problems and that they would never cope in the same situation because God chooses the special parents to give special kids to and they did not feel that they could live up to the enormous task of raising a child who had something wrong with it. She always wondered, she said, about why I had an amnio centesis procedure during H’s pregnancy but not during J’s and was it because I was older when I was pregnant with H and needed one then? Was I angry that I had not had a test with J? I could have found out he had problems then, she said, if I had have had the tests. I am positive anyone still reading along here will get the gist that her line of questioning might be a little out of order and possibly not well thought out.
Now after I bit my tongue for what seemed like an eternity and I had counted to around a million in my head I decided I could either use this moment as a teaching one or....... do a toxic friend audit there and then. I chose the option to enlighten a previously unaware friend that the battery of tests she was so keen to subject herself and the baby to when she does actually conceive does not necessarily detect all the “problems” (thought best to stick with the language she understood) she was worried about.
Calmly I explained there is currently no genetic testing available for Autism and that, no I am not angry about that at all, nor should she worry about how I cope in my very much NOT awful “situation.” I am actually very much relieved believe it or not that there is no such prenatal testing and that I did NOT have to endure the agony of trying to decide what the “best” course of action would have been if such a test did exist and picked up a “problem” with J. I explained I did have some genetic testing with H and that yes partially it was advised because of my age and that a previous ultrasound had picked up an issue worth investigating with H but that throughout the process I never really sat well with even having the test but felt a bit bullied into it by the medical people. I explained I had pondered the outcome of that test and in retrospect have no idea why I agreed to it in the end as I was not going to take any “course of action” in that pregnancy. I had experienced loss with my stillborn daughter and knew the crushing pain of such loss well. I had decided whatever the outcome of the test I would go ahead with the pregnancy but use the results as a learning tool about what might be ahead rather than as a maker or breaker on any difficult decisions. If H did have a genetic issue I was willing to deal with it. I’d lost a baby with a chromosomal anomaly and if I had another baby on board considered widely as not perfect then fine with me. I also expressed my feelings about that trite, useless and inaccurate platitude us special needs mums get all the time... God gives the special kids to the special parents..... Look, if that is the best bit of language someone can come up with when you find out someone's child does indeed have a “problem” according to society then fair enough as again, it is a very difficult conversation to have if you have not walked a similar mile to the parent in the recent post diagnosis period but please.... I beg the reader or the listener one thing......
Do not give me (this is different for everyone, I am only talking about me here) a lesson in religion or your philosophical views on why my number came up in what is pretty much the lottery or crap shoot of life and living. I am not a Christian or subscriber to any faith in fact so this saying does not bring any comfort to me personally at all but even putting the presumptive nature of telling me God has chosen me aside, it is not true for me. It is not what I believe. I can assure you I have seen many parents who in my opinion are definitely NOT special who have been given what some choose to see as the gift and others choose to see as the burden of a child with additional needs and disabilities. I was not chosen nor did I choose my current lot in life. I made many plans and chose many things over the course of living my life whilst my life happened around me and led me here. No one chooses the child they will birth however the majority of us get the exact one we wanted somehow whether you know they are going to be born with additional needs or not. That is the nature of parenthood. The overwhelming and unconditional love for your child. Your child. Your child whether born with “problems” or not. The love is the same. Again... Trust me.
So there I was in my mind whilst having this conversation... My mind took me back. I was back in the period of my life where I was waiting for a test I was not sure I wanted to have to find out if there was something wrong with my baby (society’s language, not mine). I had to wonder and still do why we bother testing for these things anyway? We can now select which disabilities we are willing to live with if there is a test to detect them prenatally. I wondered why we are now in this medically pushed position of being able to say no to Down Syndrome and a host of other chromosomal issues but we take our chances with hearing impairment, vision impairment and a wide array of other perceived disabilities that are not currently detectable through genetic testing?
I thought about saying no to this “type” of baby in the medical baby “shop” and choosing a different more perfect one and then getting it home and one day, the baby now grown into a young boy or girl and then the child you chose because of its perfection or normalcy has an accident and suffers neurological damage or paralysis or both. The old crap shoot of life thing rearing its head once more. The nagging feeling that nobody ever knows what is in the future anyway ate at me whilst waiting for these bloody tests. Why was I having them and what would I do with the information? The same friend who offended me today had many equally naive and uninformed comments back then too. I remember hearing her tell me about which problems she could handle if she knew the baby had them in advance and those she would terminate instantly over. Autism was one she mentioned. Autism was a deal breaker for her without question or hesitation. At the time I was ignorant about the nature of Autism and that it is a very wide spectrum and also ignorant to the infinite range of functioning levels and co morbid conditions that make up this spectrum (as with most special needs and diagnoses in fact). I was like the rest of the ignorant masses who had seen a movie about Autism and had a preconceived idea of what it looked like. I must admit when she brought Autism up as her deal breaker, my previously unwavering intention of continuing the pregnancy no matter what.......??????
Well I am honestly admitting my unwavering attitude wavered slightly at the mention of Autism. I flashed through pictures in my head of a loveless, violent and lost child who I could never reach. I wavered.
However.
I did not know then what I know now. I now know I could not live a minute without my J. Not a minute. Although the diagnosis is a huge part of our life as a family it is only a small part of him. He is my baby first and foremost and he is the exact baby I would wish for a million times over and over and over again. That's what I know now. That was a very unexpected lesson I had to learn that I could not possibly have known when I wavered.
During the period I was pregnant with H and undergoing these tests and pondering my feelings about the possibility of H being born with additional needs or problems as they seem to be universally known, I had no idea that J’s erratic behaviour including climbing on absolutely everything, running away with no sense of his own danger, a sudden lack of appetite and refusal of foods he had previously loved, a sudden loss of eye contact and language and a sudden loss of reciprocity or interest in my voice was the beginning of what I now refer to as the dark days. The tantrums I described as meltdowns long before I had entered the official world of Autism where it is used widely to describe what I could clearly see as a sensory and emotional overload but could not understand why it was happening and what nearly drove me to a breakdown. The isolation of feeling in my gut something had clearly changed but having no real concrete idea as to what it was and the feeling of thinking I must be a bad parent and/or insane was crippling. Absolutely crippling. I kept thinking I should be grateful I had this beautiful boy and another one on the way after losing my daughter all those years ago. I was guilt ridden that I had even contemplated something was awry with J or that I was now undergoing prenatal tests for this new baby coming when I should simply be grateful I was able to conceive so I thought!
I ignored those rumblings first sensing and then knowing that J had surely changed. I could not put my finger on it. I had so much to deal with I rationalised. I was suffering with hyperemesis Gravardium which is a condition specific to pregnancy and is basically vomiting 24/7 to the point of dehydration (I am unlucky enough to live with this during all my pregnancies for the full term of gestation), I have the stress of not knowing if the baby on the way has a genetic disorder and I am under extreme financial pressure. I rationalised my way out of dealing with what was right in front of me. I saw J’s development stop then shortly after take off again in what I can only describe as an unusual way. The other kids at playgroup were starting to use 2-3 word sentences, address their parents as “Mummy” and “Daddy” (which J did earlier than the other kids as with all of his milestones until he was 12 months and then lost many “skills” including the acknowledgment of names and following along in a favourite song by clapping or humming or singing a few keywords). J never called me “Mummy” anymore. He simply started taking my hand and leading me to things he wanted to play with but he didn’t play with them anymore. He no longer raced his cars along saying “vroom” he just looked at his chosen few toys from the corner of his eye and lined things up. He became aloof and did not smile for the camera anymore or clap along to baby games or do the actions to Five Little Ducks whilst singing “Quack, Quack, Quack” in the appropriate parts. It was gone. Lost. He still used words but was not developing sentences and only listed nouns. He could say any word really but only looked at items and named them aloud. He would walk in a room and give me an inventory of the furniture and fittings. “Chair, roof, floor, light.” He never said words like “more, stop or yes.” He never said “juice” or “drink” when he wanted one. He just took my hand or put himself near the item of desire and made a sound too hard to describe so I will have to demonstrate. A cross between a wail and a request. “Ah ah ah ah ah ah” and bounced up and down until I worked out via a process of elimination what the hell he wanted. Most of the time I got it right. When I didn’t, those meltdowns were ferocious. It became all too hard to even go to playgroup and drag him out of there on a weekly basis in meltdown mode for whatever mystery reason he had on the day for losing it.
I did the tests with H in utero around this time and Hooray! Celebrations were in order. The tests came back "NORMAL!" (Even I was guilty of using that language at that piece of news). The new baby would be totally "fine" and was clear of any genetic disorders so I could relax now and try and sort out Jackson’s behaviour that had gotten so out of hand I thought whilst I was distracted with all the other things I had on my enormous plate of life.
I could be one of those happy pregnant women and prepare for the arrival of my new perfect baby you would pick for yourself in that imaginary medical baby shop. Life was great.
Oh no it wasn’t.
J became increasingly difficult to manage my pregnancy was wearing me out (I should probably make mention here that my babies are basically enormous. I don’t do anything under 10 pounds when it comes to my babies and my body is worse for wear by the time labour rolls around so the last month or so is a miserable experience indeed).
Beautiful "normal", "perfect" H arrived in a hell of a hurry one night in January after a total of 55 minutes of the most intense and excruciating physical pain I have ever experienced and though I had plans of a beautiful and natural calm birth, I screamed for an epidural as loud as I could but to no avail as H was not waiting for an anaethetist to arrive and he entered the crazy world he was born into amidst a chaotic and loud birthing suite with a frazzled doctor struggling to get his gloves and gown on in time, a midwife yelling instructions to anyone with a set of ears, a stunned father not at all sure what just happened in the rush, a doula (my sister) who fell in love with big bouncing baby H on first sight and a wailing mother who was very much in shock over the unbelievable ride we had all just been on during the most unexpected labour I could have ever imagined.
The labour and birth experience was so different with H than the one I had with J who took his time coming into the world due to so many interruptions during the birthing process. I was ready to receive H and the process of birthing him and was very clear about the medical staff leaving our family alone as much as possible during H’s birth so I could concentrate on the work at hand to bring this baby into the world. I knew more about the process of birth and the sanctity of the birthing mother’s space this time. I was frightened of birth and labour when J was on his way so the labour was interrupted, slow and many interventions were used to help him come out and meet us.
Interruptions: Constant monitoring of foetal heart rate, visits from doctors, midwives, family members and....... wait for it....... gulp..... The in laws!!!! I was not happy about being interrupted by the in laws who popped down for a visit in the birthing suite at all. TRUST ME!!! I felt we were being interrupted by anyone passing through Wahronga that day as it seemed like they were all in the room waiting for me to don the stirrups and start pushing!
Interventions: Gas, Epidural, Ventouse. It is ironic this child was receiving intervention even during the birthing process when I look back. His whole life revolves around that damned word these days. Intervention. Ironic.
Both my babies births are ironic when I think about it. J's so full of interruptions to what is usually a naturally occurring process and intervention after intervention throughout just like his early childhood has so far been and then there's H. Wow. As I said, born into chaos, confusion and noise. Born whilst I was screaming for pain relief but not heard and the pace far too quick for action anyway. If ever there were babies that have lived the early years representative to the birth experience, mine are it. :-)
The two labours could not have been more different but I was lucky enough to be one of those mums who just instantly connected and bonds with her babies. They are like a magic magnet made just for me. The force of our connection is the most powerful feeling I have ever experienced and continue experiencing as a permanent state of my being.
Even though connected I was still feeling an unexplainable distance and shift in J during these early days of H’s life. Again though, I ignored it and dismissed it as it was then that things really got hectic.
H was severely affected with silent gastric reflux (as was J) and was restless and unsettled all the time due to the pain. 2 days after H arrived home my husband developed viral meningitis and was rushed to hospital very very sick. Meningitis is very serious and takes many months and sometimes even years to recover from and in Andrew’s case he still suffers memory problems and some neurological issues even today coming up to two years since contracting it. We then had to move shortly after Andrew got home from the hospital so we had a new baby, a seriously ill “head of the household” an erratic, uncontrollable 2 year old and a new mum very much on the edge of sanity making up our family of 4.
I knew the erratic two year old was the biggest issue I had and could no longer rationalise his behaviour no matter how hard I tried to. I uttered out loud in a GP’s office the words I had swimming around my head too afraid to bring up in a medical situation previously..... “I think he is Autistic.” I’d been reading about it secretly for months. I’d brought it up with a friend at playgroup who was a teacher thinking she would know if he was Autistic for sure. She said no way. I’d brought it up very tentatively with Andrew months and months previous to this moment in the doctor’s office and he laughed it off saying I always diagnosed myself or family members with whatever condition Oprah had highlighted that day on her show. I’d brought it up with family members who all assured me he was fine. He was definitely not Autistic. I held my breath for the GP’s response. A doctor will know I thought. A doctor will surely know. “There is no way this child is Autistic, he looked me in the eye and talks. There is no way he is Autistic.” Strangely, I was not comforted by this rebuttal whilst I watched my son destroy the doctor’s office in a hyperactive and anxious frenzy then go into meltdown mode before both of our eyes. The doctor still insisted he could not be Autistic but he could be hyperactive. This was my trusted family doctor who had known me since I was three years old and I trusted him. I broke down. I sobbed. I begged him to refer me to take the whole family to a residential behaviour assistance program for kids called Tresillian or admit me to a psychiatric facility. I was distraught. I was totally desperate and broken.
He referred the family to Tresillian. www.tresillian.net
After a harrowing and extremely draining 5 days of meltdown hell, they confirmed that my J needed a developmental assessment, that I was not crazy and did not need to go to the psychiatric facility and that my instincts were most definitely on the money. They all but diagnosed him on the spot but could not overstep their boundaries and referred me to the next battery of tests I was to endure that year but this time with my child who had required none prenatally in utero at all. This was definitely not an expected outcome.
After another doctor, this time a pediatrician, dismissed our concerns about Autism we walked away feeling empty, unheard and really frustrated. My issues around language, listening and the need for an understanding nod appeared again as I sat gobsmacked by this doctor telling me Autism and Aspergers is simply the “flavour of the month and the new trendy diagnosis of choice for naughty or hyperactive kids.” He looked at my boy and after 10 minutes gave him an official diagnosis of severe ADHD and ODD (Oppositional Defiance Disorder) never once taking into account the numerous sensory issues I’d described, the loss of language and skills and the lack of reciprocity that had previously been there. Dismissed. Ignored and unheard. He handed me 2 separate prescriptions to get J to sleep at night and then keep him awake but calm during the day and said, “see you in six months when he’s calmed down a bit and more like a normal kid.”
Fed up, I caused a scene. I did not sob this time, I stood my ground and refused to be dismissed. I flung his prescriptions in his bin and have never had cause to use them once we found alternative therapies and interventions and eventually a beautiful and like minded pediatrician http://pymblegrove.com/practitioners/dr-antony-underwood who also practices as a homeopath who actually respected us..... and used non offensive language.... RARE. Very rare... TRUST ME. Before we got to that point of the journey, I still had to make my scene and cause hell in the original pediatrician's office so back to there...... I demanded a developmental assessment as I knew there was much more to it. I was finally heard. The developmental assessor was the one who eventually gave the diagnosis after months of waiting lists, frustration and mixed messages from many doctors and community based clinic nurses who actually told me J was a problem too big for them to handle and to not bring him back to the clinic checks as he needed a specialist.
Just post diagnosis, my trusty “frenemy” (cross between a friend and an enemy) who had and still has such strong views on what she deems as a problem that she would rather have had the knowledge to “deal with” during pregnancy was very vocal in her assurances about me being a chosen special one etc. I did not hear from her again for months. In fact I drifted apart from many friends. It was lonely. It still is some days but not as much anymore.
We are seeing real progress with J these days as most people in my circle of friends and family know, as I shout it from the rooftops hourly about how wonderful he is and how proud and grateful I am that he is developing, not “normally” but differently than your typical kid. Still he is developing though and what a brave, clever and truly wonderful boy he is. He calls me mummy again, he is not aloof, violent or lost at all. I can certainly reach him. He thrives on being accepted, understood and appreciated. He is warm, friendly, affectionate, funny and a host of other adjectives that basically mean he is loved and treasured for who he is. He loves his little brother and his little brother loves him back. Unexpected. I was ignorant to the reality of Autism and the lack of limits I had previously thought existed within that diagnosis. My boys are the lights of my life and if anyone had told me Autism could be anything other than a tragic outcome BEFORE I had lived it I would have thought they were crazy. Autism, and the joy I've found in J's language returning, J's reciprocity returning and the lesson learned to never ever take anything for granted, it turns out is the most unexpected outcome we've so far experienced.
I have thrown myself into my new unexpected life with gusto and embraced it with open arms as I feel there is no other way to truly support and nurture my children who are also living an unexpected life in most people’s eyes.
I am writing for an online Autism magazine about what I have spoken about today and other issues that come up day to day from the point of view of a besotted mum of two remarkable boys, one who happens to have a diagnosis of Autism and the other who is growing up in the maelstrom of what that diagnosis means in a family and how it affects the dynamics of everyday life.
I am happy and content for the most part even after experiencing so many unexpected outcomes in what was supposed to be a carefully planned life and occasionally like today I get angry, sad and shocked about a comment, an offhand remark or a conversation laden with insensitive language.
Next time you go to use a term like “that child/person has something wrong with them” or “that child has a problem” I would urge you to think about this.
Perhaps the only problem is ignorance and perhaps the only thing wrong is an overwhelmingly large proportion of society is lacking in understanding. Perhaps when you are referring to people, schools, outcomes, behaviour or anything as normal we should ask this question: WTF is normal anyway?
We do not refer to my son as having a problem or having something wrong with him. It is offensive. My son and many other children with additional needs are neurologically different & unique but when you think about it, so are we all whether we have a diagnosis to live with or not.
Perhaps I could have cut this down to three simple words without the need to tell you my life story but that would have made today’s topic of unexpected outcomes during pregnancy, birth and motherhood very short and you girls may not have come away with an understanding of why these three words are so important in your role as doulas and support people for the expectant, new or struggling mum. :-)
The three words I urge you to take away from today are these and please write them down:
“Mind your language.”
Thank you for “listening.” Listening....... now there is an important word too.
All the best and thanks again.
*****NOTE TO THE READER/LISTENER: I am not anti abortion and this is not a pro life or pro choice statement. This is my honest account of many feelings about my own life and my own choices and what led me to make them. These feelings were stirred up during a conversation that took me by surprise. I believe in the right to choose what is best for your own family, your own circumstances and your own situation. Not everyone has the same opinion or would make the same choices. I do not judge those who have made different choices than I have nor do I think we should all believe the same thing or live the same way. I like that we have freedom of choice and that we are all different. It would be boring if life was any other way.********
Friday, February 19, 2010
Bunnies, cuddles and me.
The short answer would be because this blog is about Autism awareness and until recently H was still considered "typical" but then of course, he was diagnosed as being on the spectrum and then I still did not impart quite so much about him even after that.
None of this was a conscious decision but I guess I kept H all to myself because he was still my baby. My beautiful, unassuming little man of few words (also until recently) who simply remained by my side always quiet, cuddly and in what appeared to be understanding of his role of always being second. Second born, second to have his seat belt strapped in, second to have his bag packed, second to have his shoes put on his feet, second to have his toast served in the morning and in the end, second to get the Autism diagnosis.
One thing he has NEVER been second in though is the place in my heart where I keep my babies little loves. I'm not sure if my boys inhabit the exact same spot in my heart but they do have equal space.
J is a whirlwind of activity, action, noise and bouncing energy and really does live his life large and loud. He was nicknamed Hurricane J well before he received a diagnosis of any kind and it really is an apt description of his approach to life.
Then come my little H bunny. I've always called him my cuddle bunny because he is so soft, and squishy and huggable. If children were edible, this one would have been gobbled up many times over by everyone who has been lucky enough to get lost in the biggest, deepest pools of inky brown (almost black) eyes you have ever seen. The same eyes that drink in his surroundings in silence and shy wonder yet sparkle when he giggles uncontrollably at his silly mummy dancing along with him to his beloved Wiggles singing "pway (play) your guitar with Muwway (that's Murray to the Wiggles fans)."
Even post diagnosis I didn't give too much more away about our journey to get to diagnosis as H remains an enigma.
He recently did a Sensory Gym http://sensorygym.com.au occupational therapy intensive (school holiday program) and after having such a concentrated round of therapy sessions focusing on his apparent sensory defensiveness and difficulty in crowds, he came out of his shell in a way I never expected. No more shaking in the corner and hiding his head whilst clinging and cuddled into my always open arms. I now have a literal bunny who is jumping, crashing, and bouncing all over the place! A (hyper) boy who squeals, yells and asserts himself a LOT!
Oh no! Where did my cuddle boy go? Will he come back? Where is that quiet, dependable and shy baby who seeks out my cuddles to feel safe? Is it OK for me to feel sad that my shy baby is becoming independent?
I'm not sure if it's OK, but it is how I feel. I know he is coming out of a shell that he no longer needs all of the time to retreat into when he feels unsafe but part of that safety shell used to be my arms. I'm not sure my arms are ready to open out and let go as opposed to open up and draw him in but I will try. His journey is his own and this is the beginning of him embarking on the big wide world with his own sense of security.
It's now time for this mummy to bravely stand up and cheer for his achievements. For H a cheering moment is not so much of one that consists of learning language (he is advanced in that area and has lots of words and conversation) and nor is it a moment of cheering for developmental based milestones as he's hit them all just fine.... For H I have to learn to cheer as he becomes less dependent upon my open arms to save him from a group of children he is too terrified to approach or even enter a room of anymore than a few people. For H I must learn to stand up and cheer when he enthusiastically greets people he was previously too frightened and anxious to acknowledge whilst hidden in my arms. For H I must learn to cheer when he goes exploring in the park and climbs up on a swing to play without my encouragement and constant presence. For H I must cheer when he shows signs of withdrawing from my embrace which is the total opposite of my previous experience with Autism as I was always trying to reign Hurricane J, the adventurer with no sense of danger back in.
Oh the unmitigated agony of letting go of my baby. It is indescribable. No one tells you all the pain this parenthood thing brings! My heart aches to watch him letting go slowly and becoming his own little man in a world too frightening for him to be a part of before.
HOWEVER!
My heart is also bursting with pride that he is letting go. I am learning to unclench those arms a little bit too and feel the joy he needs me to feel when he bravely tries something new and tentatively smiles at me with those gappy teeth I love and those never ending pools of chocolate we call his eyes.
My arms will always be open for him to visit when he needs a safe place to bounce into in his new world of adventure. Oh look... Here he comes now. A very bouncy giggly bunny coming towards me for a quick squishy cuddle.
What bliss this thing called parenthood is too amongst the pain.
My quirky boys who live in that heart of mine fill it with so much joy, happiness, pain, uncertainty, anguish, bliss, love and pride.
What stories they give me to tell. I will be forever grateful they are mine.
**To my H bunny: I love you baby boy. You have been the cuddliest of bunnies a mummy could EVER wish to have in her arms and I look forward to watching you hop out into the big world in little steps until you reach the stage where you bound through life with the confidence I know is in there. xo
Thursday, February 18, 2010
Creativity and stories of delight. where there are said by the "experts" to be neither!
Creativity we find through play and stories of delight.
“Look mummy, I’m a crane! I’m a crane and I’m saving Thomas. Thomas is crashed and needs my help!” The excited little voice I’m listening to belongs my son who is playing a game with his beloved Thomas the Tank Engine trains and is role playing as the different characters, changing his voice for each one as they travel about on his recreation of the Island of Sodor and at this particular moment is using his arm and clenched up hand as a pretend crane to rescue poor Thomas who has run aground.
I watch the game with a full and happy heart. My son is sharing as best as he can with his little brother, H, who always seems to end up with the trains J likes the least but also never seems to mind as he too is thrilled to be included in these games fuelled by J’s imagination. It is as though H understands this is something really special he is being invited into and for the most part they share a relatively relaxed game. Of course they squabble here and there and when my back is turned I would be willing to bet that they snatch things from one another and the like but for the most part they play happily (typically, you might even say).
The happy games of a “nearly 4 year old” are lovely to watch as you see them discover the world around them and question the existence of everything with that age old pondering..... “But why?” It is fun to become the inhabitant of that beautiful world that a child lives in so full of innocence and magic.
These games were not expected though in our house. I am grateful and in awe that I get to play in this world I thought would never exist for my boy. The stereotypes surrounding a diagnosis of Autism include that of a child trapped in a lonely world without imagination. Those who have read any of my previous pieces would know I am not one to buy into stereotypes but I do remember watching my baby boy line up his trains in meticulous fashion and rearrange them over and over again in a perfect pattern known only to him and thinking it would be very unlikely that we would ever experience the typical games of tea parties, making mud pies in the sand pit or having a treasure hunt as pirates in the back yard. The word creativity was not one I associated with life on the spectrum but how I am learning that what I assumed and what is the truth are two very different things! The word creativity to me meant painting or writing or playing a musical instrument among other pursuits throughout the art world. Whilst J has shown no sign of a stereotypical but also apparently very rare savant like ability you hear of about some people on the spectrum in any of these endeavours, he is exploring a wide array of interests and is a fine story teller I’ve noticed. I see the development of his imagination which is surely the beginnings of a world of creativity and potential. For now he is becoming an expert in a child’s work or occupation of play and stories. He is an expert in using an imagination I’m sure many would not expect him to have. His imagination is for the moment his creative endeavour and how I love it when I have the pleasure of being invited to play in his games filled with adventure and fun.
The three of us had a pretend picnic in our backyard recently and made cups of tea with our Dora the Explorer tea set and water from the garden hose and our feast was of the plastic variety but was the most delicious I’ve ever tasted due to the beautiful company on my picnic blanket. We took a toy radio out with us and danced to tunes we made up out on the grass and listened to Jackson tell us a story about the ants from the grass coming to visit our blanket for lunch. His story of the ants consisted of us sharing our bounty of plastic food and that included a delicious, juicy red apple and sausage with sauce. “Yummy yummy” said Jackson. The ants enjoyed their lunch and returned to their home in the grass. Long after we had packed up our blanket and put the toy food set away, I shall remember that story and smile.
I understand this ability to imagine and tell a wonderful story is indeed not to be taken for granted. I smile to myself often when I hear his cars, his trains, his planes and all of his favourite automobiles chatting away to each other and helping each other out of all sorts of tricky and sticky situations that J has created for them.
Back in the early days, pre and post diagnosis I noticed J had an obsession with patterns and symbols that were thought to be because of the need for those on the Autism Spectrum’s need for order and reason. I’m not sure this is the simple end of the explanation for a natural tendency to be drawn to shapes and the like. Perhaps it is the beginning of an interest in art he can explore later on? I am constantly surprised at J’s unusual eye for shapes, colours and symbols. The details he loves to get lost in like a pattern on a shirt are details I would miss if he did not happily and excitedly point them out. I might have a top on I like simply because of the colours and have never really looked at properly and Jackson will point out the diamonds, the squares, the hearts, the curves and the straight lines in the pattern with such exuberant delight. If I give him a paintbrush and paints though he does not recreate the lines and the shapes he so loves to look at. His brush strokes are clumsy and perhaps even gauche. His enthusiasm is tangible however and again the talent for story telling emerges when he sees an accidentally created face within the swirls of his painted colours and exclaims the face is happy or sad.
I wondered if I could use this penchant for shapes and storytelling to his advantage and instead of giving him an overwhelming blank canvas to paint upon recently with the usual brushes, I cut shapes out of some sponges and scouring pads and filled up pots of paint. We started our project with a chat about his favourite topic of anything train related. We decided we would paint a train and as I showed him how his shapes could come together, before my eyes he had created his heart’s desire and “painted” a train by simply dipping the sponges in the paint and stamping the paper putting the sponge shapes in the pattern of a train. Between us we made up a story of a little blue train that was puffing downs the tracks very fast! The train blew lots of black smoke and the fireman shovelled coal to keep the engine running. Up hills our train went and past fields of cows and down to the station to drop off the passengers who were having a trip in the country.
The stories pop up wherever we are in fact. As we drive along in our car I often hear him narrating along in the back about what he sees along the way and what is going on outside the vehicle. Chattering away about how he sees the world and creating his own story about us in the car, surrounding cars, houses, animals and even traffic lights. The sound of a beautiful voice that I wondered if I would ever hear not so long back chatting away telling his stories. His wonderful, imaginative and creative stories are so unexpected from a child who society would overwhelmingly misunderstand and label a certain way upon hearing the word Autism.
Do I think his one great painting of a train and his lovely, lyrical and often funny little stories mean he will be the next Rembrandt or Shakespeare? Of course I don’t feel that it’s likely but I also can see no reason why he would or will be impaired in his endeavours should he pursue either field simply because he has Autism. I take comfort and again find the joy I speak so often of when talking about Jackson. I take joy in his discovery of his own creativity and the surprising and seemingly limitless imagination in a world I once thought would be limited indeed.
I look forward to more stories tomorrow when I see him again as he wakes up full of energy and tales of his fancy. I wonder if his stories are born of his dreams whilst he slumbers and I wonder what lovely games we will play in Jackson’s imagination tomorrow. I look forward to the games and stories tomorrow and the next day and the next day and the next day and forever.
Volume 1, Issue 5 October, 2009
Sharisa Joy Kochmeister, Publisher and Managing Editor
Jay Kochmeister, Copy Editor
Copyright 2009: All rights are reserved under copyright laws. No part of this magazine may be reproduced in any form - including written, mechanical or electronic means such as information storage and retreival systems, without the express written consent of the publisher.
This magazine is a great read for anyone who is living with or affected by Autism. I am a proud regular writer for the publication and have recently been appointed to the panel of advisers which is a huge honour.
For further information about how to subscribe to the magazine or join Sharisa's Yahoo group please contact her or Jan Kochmeister on Facebook. Subscription is free.
Link to Facebook fan page below:
http://www.facebook.com/pr
Chantelle is a proud and happy mum to J and H and wife of Andrew. J lives on a quirky, colourful and unique spectrum which is more commonly known as living with Autism. Chantelle is passionate about raising awareness, volunteers with various Autism Services (NSW Australia) and is the Vice President of The Autism and Aspergers Support Group Inc (NSW, Australia Hawkesbury region). Chantelle
is also the creator of My Special Story – Special Story Books for Special Kids, a writer, an advocate and friend of Sharisa and the Autism community. http://myspecialstory.weeb
Wednesday, February 17, 2010
A celebration of my beautiful boy and an opportunity to share it ....
Hello all and sorry I have been a little bit slack in keeping the blog up to date.
I have had a whirlwind of a few weeks which I will write about very soon but in the meantime, I found out that a wonderful charity and support service is using one of my writing pieces during their gala dinner/ball coming up soon. I am of course honoured and would like to take the opportunity to thank the Autism and Advisory Support Service www.aass.org.au for supporting me in many ways over the last few months and especially by supporting me and my writing work.
The piece they are using and reading out during their Ball is a poem I wrote for my son on his birthday last year and it is with great pleasure that I include it in tonight's blog for the parents of special kids like mine to enjoy. It was first published in Sharisa Joy's Voices and Choices of Autism online magazine (of which I am a regular contributor and on the panel of advisers) . See links and copyright info below and please take the time to enjoy the poem. It is not technically perfect or even good from a writer's perspective but boy oh boy it is written from my heart.
In only four days
We will clap and we’ll sing
To honour your life
And the joy that you bring.
I cannot believe it
Time. Where has it gone?
As I write this
I’m watching you play in the sun.
Not so long back I birthed you
And hard did I fall.
I fell so in love
You were my, everything, my all.
We’ve bonded the way
Of the movies and books
We cuddle and kiss and we
Share special looks.
Why special they ask?
It’s the same for all mothers?
Not this one I assure
No I’m not like the others.
The ride we’ve been on
And shared ups and downs
This last year tumultuous
In a spin round and round
The ups oh so high
And the lows, so bereft
So sad was this Mummy
When I thought you had left.
Your eyes lost their way
Could not find the old light
But your heart and your strength
Fought so hard and with might.
I heard not my name
In your world it was lost
How could I find it?
Any bridge I would cross.
The bridge we did find
You invited me back
And I fought alongside you
And we found our own track.
Our own special way
No not like the others
A Mummy and Daddy
And 2 special brothers.
We know you are happy
Your world it’s so safe
Your spectrum of love
What a wonderful place.
I love that you visit
My “typical” place
And find such unwavering
Light and love in my face.
Our eyes are together
You look and you smile
So honoured and grateful
You stay for a while.
For granted I take
Nothing, no not a thing.
I savour each word and look
My heart full when you sing.
I’m not like the others
You taught me much more
Would I have learned no conditions?
Without your lessons, I’m not sure.
The joy you have taught
Where I thought there was none
The warmth and the love
And our laughs and the fun.
I’m not like the others
That know, not the pain
We’re different my son
No we’re not the same.
This hurt me at first
But not anymore son
If love could be ordered
You would still be the one.
The one I would order
No change would I make
My heart chooses you
If not you, it would break.
Our journey unique
No, we’re not like the others.
Please know though I’m happy
And don’t envy another.
The gift that you are
And continue to be
Is more than I asked
Yet you gave it to me.
Your birthday so close
These words a small gift
In exchange for your strength
And your love makes me lift.
I am better because
you were born my dear boy
You raised up my soul
You are my light and my joy.
Happy Birthday J. I love you. Thank you for making me a better mother to you and your brother and thank you for making me a better person.
You continue to amaze me every day.
I love you, I love H and I love your Daddy. What a lucky family we are to have each other.
Direct link to magazine: http://autismvoicesandchoi
With the very kind permission of the publisher I am able to share this piece.
Volume 1, Issue 5 October, 2009
Sharisa Joy Kochmeister, Publisher and Managing Editor
Jay Kochmeister, Copy Editor
Copyright 2009: All rights are reserved under copyright laws. No part of this magazine may be reproduced in any form - including written, mechanical or electronic means such as information storage and retrieval systems, without the express written consent of the publisher.
This magazine is a great read for anyone who is living with or affected by Autism. I am a proud regular writer for the publication and have recently been appointed to the panel of advisers which is a huge honour.
For further information about how to subscribe to the magazine or join Sharisa's Yahoo group please contact her or Jan Kochmeister here on Facebook. Subscription is free.
Link to Facebook fan page below:
http://www.facebook.com/pr
Chantelle is a proud and happy mum to J and H and wife of Andrew. J lives on a quirky, colourful and unique spectrum which is more commonly known as living with Autism. Chantelle is passionate about raising awareness, volunteers with various Autism Services (NSW, Australia) and is the Vice President of The Autism and Aspergers Support Group Inc (NSW, Australia Hawkesbury region). Chantelle is also the creator of My Special Story – Special Story Books for Special Kids, a writer, an advocate and friend of Sharisa Joy Kochmeister and all those living with Autism. http://myspecialstory.weeb
Wednesday, February 3, 2010
Strike!
I have had the most surreal few days of my life. I've been toying with that whole sending positive thoughts out to the universe thing that is so popular these days and whilst I would normally ridicule such malarkey, something really feels like it's shifting in my world... Actually our (my family's) world.
Much to my surprise I received a nomination for the Barnados Australian Mother of the Year Award http://www.bamya.com.au/html/ and I am not going to talk about that right now as it simply renders me speechless to think about someone taking the time to nominate me. I am blown away, honoured and totally shocked but also truly grateful to my friend Belinda Stanton (who is a new mum and incredibly busy herself) for doing such a lovely thing for me. I'll probably talk about it at some stage on here but for now I'm just taking the time to enjoy the feeling of appreciation and gratitude and keeping all those wonderful warm fuzzy feelings just for me and my family..... That was huge news but what I'm writing about now came up because of another positive universe gift landing in my lap unexpectedly.
Yesterday I literally stumbled upon a fabulous business opportunity for My Special Story Books For Special Kids (will divulge more as it pans out) and I am now sitting in the middle of a BIG MESS in the lounge room with kids running wild and fingers flying across the keyboard (also wildly) putting together a proposal I need to be ready NOW....... I've practised the old saying of picking my battles wisely today and am not sweating the small stuff (by small I mean small people) and have had a day of relaxing the usual rules and schedules we tend to follow to keep order and calm around here for the boys to feel secure.
No schedules, planned activities, outings, extending skills through play, using every moment as a teaching opportunity or anything remotely like our usual day today. Today has been about the basics like food preparation and avoiding injury or death (basically). Everything else has been focused on this proposal. Now don't normally put work first but this proposal has the potential to change our financial and therefore life circumstances so by putting work first today, I was inadvertently putting my boys first. Today I bowed to the altar of the Television God and asked it to babysit my wild boys so I could just get a few things finished by deadline..... TV did a pretty crappy job of the babysitting in honesty but it did provide a few moments for me to knuckle down and the rest of the day I simply chose to ignore the mess being made in the kitchen as the small people delightedly unpacked the Tupperware cupboard and arranged it in their own unique fashion around the rest of the house. I ignored toy buckets being tipped out and galloped through, I ignored the usual scuffles and bickering between brothers who always think the others grass is greener in toy land. I ignored A WHOLE LOT.
I am very pleased to say though, I did not ignore my son when he asked me a really important question. I listened to him and encourage all parents to really listen to their kids even when stressed and even when on whatever deadline you might be on during your day.
It might NOT be the same question you've been hearing on repeat all day, week, month about a packet of chips, a biscuit or whatever food item they NEED in any given moment over a day of grazing. They might actually be really asking you a question you want to answer... J and H (my kids) have huge issues with sharing anything including a moment in their games as they are on the Autism Spectrum as you would know if you follow this blog. Today I was multi tasking in the usual busy mum fashion, on hold on a phone call, reading an email on my laptop which was propped upon the kitchen bench and throwing something resembling morning tea together for the boys feeling totally overwhelmed, exasperated and stressed out.
J came to the kitchen door and asked this question: "Mummy, would you like to have a turn playing bowling on the Wii with me?"
I hung up the phone, walked away from the computer and said, "I would LOVE to have a turn playing bowling on the Wii with you." I was then thrashed by the Wii bowling champion of the world whilst his little brother and my favourite cuddle bunny in the world, H, cheered enthusiastically from the sidelines of our lounge room shouting, "Strike, YAY STRIKE" for both J and I regardless of whether we scored a virtual Wii strike or threw a gutter ball. It was a really nice moment.
Listen to your children. If I didn't listen in that moment I would have missed it and it was a wonderful one of sharing J and H's special world.
Friday, January 29, 2010
Just Us
Wow!!! It’s been over a month. Sorry about that. School holidays took their toll on my writing juices I’m afraid. In fact, the school holidays took their toll on everything about me! Sheesh! Meltdowns. Lack of routine, Occupational Therapy intensive holiday programs, charity work, paid work, launching businesses, being deemed inspiring by the lovely Heather James from Inspiring Mums: http://www.inspiringmums.com.au/interview_cj.html, Christmas, New Year, resolutions made (and of course since broken), meltdowns... did I say meltdowns?
Oh good grief! This time last year I sat down after dropping my beloved firstborn son at preschool after lovingly writing a special story for him so others could understand his needs, issues and more importantly his strengths and abilities rather than disability. I sat down and sobbed for the hole in my heart it left to leave him with strangers.
Those same strangers are now valued and adored honorary members of my family and more importantly J’s special friends as well as his preschool teachers. I thought I could never find another who would love my child the way I do or who could look out for him the way I do or understand him the way I do. Look, they probably don’t love him like I do or look out for him in the same way or even understand him the way I do. I’m his mum. No one is going to understand him the way I do. BUT!!! The teachers at his preschool have accepted him, they support him and they do love him and applaud his achievements. They tell me excitedly of new milestones and of the day’s activities and they make sure our family is embraced with open and welcoming arms.
They understand on the bad days and they cheer on the good days. I think the fact our family was so open about Jackson having special needs and even went to the extreme of placing his My Special Story for Special Kids book on the sign in desk for all to read helped us settle into the preschool better than if we had have kept it private. Being open really helped other parents understand Jackson was tricky but oh so much fun to get to know if you make the effort.
So anyway, I sat down and sobbed this time last year with a broken heart about my baby going off to preschool. After the school holidays from hell we just had with a child so clearly struggling to remain occupied and so clearly struggling to find a sense of security in a world of no routine and no preschool I think I went a bit mad. Honest. I went a bit loopy and stir crazy. I was stuck in this land of limbo where I couldn’t really take the kids out and about much because of the mammoth undertaking it is to manage them and their issues out in the world on my own but I also could not stand being stuck at home day after day after day during the seemingly endless holidays.
Soooo..... It’s with a little guilt I admit to wondering if it would be logistically possible yesterday on first day back at preschool to drive down to the gate, slow down enough to nearly be at a stop and fling J at the preschool with a cheery wave and a shout out of, “All yours!!! Thank God the holidays are over!”
I admit it with a touch of mother guilt but I do admit it. I was sooooooooooooo soooooooooooo sooooooooooo pleased to be able to spring out of bed (I don’t normally spring anywhere, especially out of bed) and sing a good morning song to the boys (I also do not regularly break into song) and announce it was preschool day!!!!!!! “Wooo Hooo.” The children were understandably quite puzzled by the spring in my step and newfound love for singing our morning routine and my own squeals of excitement when 8.30am rolled around which signaled time to hop in the car and go to preschool.
They were puzzled but sort of amused I think and drop off went quite well even though J was going into a new room with a new teacher with new adventures for the new year. It went pretty well I think because of the effort I put into making him a story all about returning to preschool with pictures of the new room, new teacher and new adventure possibilities so he was prepared. I’d also revamped his My Special Story Book for Special Kids with updated pictures of him and amended parts of the book like how he behaves in a meltdown or when anxious as all of those things had altered over the course of the previous year that were in his previous book.
I picked him up at 3pm, refreshed from a day of not hearing and seeing his obvious boredom with being at home and I asked him all the questions I usually ask and not often get an answer to because of his processing difficulties.
This is the moment I later realised he had matured and had progressed again whilst we were struggling through the holidays in spite of me thinking I was inadequate educational and developmental stimulation for his needs. I asked, “Did you have a good day today beautiful boy? Tell me about what you did.” Excited and loud response, “I had suuuch a great day and it was exciting and we read a story about trains and owls and sang about a starfish and I played chasings with Max and Cooper and played dress ups with Zoe and Sage and I put my hand up for Jacqui when she called J and I did painting and sandpit.”
Wow! Big response! Lots of words! Not that big a deal about the lots of words as Jackson is extremely high functioning and tends to out talk any kid whether typical or with Autism and could talk under water with a mouthful of marbles. What was a big deal is this... For a whole year, I’ve been relying on a piece of paper J’s teacher’s aide gives me at the end of each day called, “Today I...” Vicki (teacher’s aide) thoughtfully hands me a little rundown of the days activities written from J’s perspective about what he did that day and who he played with because this woman and the entire staff at the preschool have sensed my yearning to know that my baby is making friends, is accepted and is enjoying his day and feeling safe. Some day’s I’ve asked what he did and gotten a random response of nonsensical activities not listed on the “Today I” sheet and some days I’ve gotten no response as J has been too overstimulated and overloaded to respond to anything after a big day and some days I get one or two things he did and they are listed there on the sheet so I know he did do them like he said but he never really lists them in a typical way or in a clear way for others who do not understand his quirks to comprehend. I’ve had in the back of my head for some time that I may have to accept that I will never get a day of so called perfect or even logical recall from him and that I will simply not be included or invited into his day via this medium of conversation us neuro typicals love to engage in more so than those on the quirky spectrum.
I nodded and exclaimed it sounded like a fun day and thought to myself I must look at the “Today I” sheet and see if any of his listed activities were on there and have a look at what he actually did according to my trusty scribe Vicki.
I forgot to check it until this morning on day 2 of spritely springing about getting ready for preschool. I glanced over it and stopped springing around immediately. My heart leaped to my mouth and tears sprang up out of that silly springing mood I was in...
Remember what he said about his day......?
“I had suuuch a great day and it was exciting and we read a story about trains and owls and sang about a starfish and I played chasings with Max and Cooper and played dress ups with Zoe and Sage and I put my hand up for Jacqui when she called Jackson and I did painting and sandpit.”
It was all there in black and white on the “Today I” sheet. My baby had treated me to a little glimpse of a conversation all the “other parents” get to have with their kids. The conversations I was so envious of but had accepted were just not in our future and moved on to enjoy our own special bond and special way of understanding one another without the typical conversations.
It’s one of those moments I shall treasure forever. A little treat my baby gave me with no expectation and no prompting and no pressure.
It was just us having a chat after a “typical” day at preschool with his friends and teachers whom we both love.
Thank you J. xo
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