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.********
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