I am swamped today.Darcy's Easter concert this morning then Ryan's IEP meeting at school,so I have cheated and asked a friend to be my *Guest Blogger* for the day.
Please welcome Nicole to Apergers Rules. I met Nicole at one of the first workshops I attended at Early Intervention when Pierce was newly diagnosed. I was still feeling numb and bewildered and very emotional. I can honestly say I would not have coped if not for the support of friends like Nicole and she is the reason I am so passionate about awareness and helping other parents on their journey. We have remained friends and our children now attend school together. I am sure we will be friends for a very long time and I feel blessed to have her in my life.
April 2012 – and it is National Autism Awareness month. My friend Teriann has asked if I would consider doing a “blog” for her “blog”..LOL… Well of course I said yes and so here I am. My name is Nicole. Im a forty something stressed out mum of 5…. Yep you read right….5. I have twins Olivia and Blair aged 9, (both with Aspergers), Nicholas 6 nearly 7(PDD NOS), Marcus 5 and Mayeva 3. Somehow with all the craziness I have managed to stay married to my dear husband Craig and we have been together now for 13 years.
I will try to be brief on our journey to where we have arrived at now. Only because it is so long and drawn out I don’t think there would be enough space to include all the “ups” and “downs.” Craig and I met many years ago when we both worked as police officers. We were both mentally and physically fit and we were looking forward to a bright a future together, which of course included having children. After marrying we began straight away to try and start a family. After much time, I was diagnosed with endometriosis. Subsequently after IVF I fell pregnant with our twins, Olivia and Blair. The birth was horrendous. The babies were born prematurely. It was a long arduous journey but we finally made it home with our babies after 100 days in hospital.
Once in preschool their teachers began to talk to us about their concerns regarding the twins. We had them assessed thinking that they were just developmentally delayed because of their prematurity. We were then told that they had Aspergers Syndrome. All I knew about Autism was that I had seen children with Autism flapping their hands or doing repetitive behaviours. I had no idea of what we were about to face.
Miraculously I fell pregnant naturally with Nicholas. His birth was great (only because I was under a general anaesthetic). He was a good baby. Then at about 18 months of age I started to notice things about his behaviour. I started telling my mum and husband that I had concerns for him. I was brushed off as being too over analytical. But my “mother’s instinct” knew something was wrong….you mums know what Im talking about right..?... Sure enough his symptoms became much more prominent. He was eventually diagnosed with P.D.D. (N.O.S.). I am certain now at this point in time his diagnosis will change in the near future to at least Aspergers /Autism.
Knowing that falling pregnant with Nicholas was a “miracle”,( as my doctor so kindly told me), we failed to take any precautions. It was then I fell pregnant with Marcus and was very surprised to say the least. I always remember the day they told us on the ultrasound scan I was having a boy. Deep down I so wanted this baby to be a girl. Not because of some deep inner “want” for a girl. Just merely because I wanted the chances of this child having autism to be less than if he were a boy. Marcus seems at this stage to be neurotypical. He is great talker (much like his mum and dad) and is just your typical boy who loves playing. Yet he is exposed to so much sometimes, I often just wonder what sort of toll all of “this” is taking on him.
So… after the birth of Marcus my days were definitely very busy. I had developed a prolactinoma in my pituatry gland and my periods had stopped for nearly 2 years. I needed treatment for this benign tumour. Whilst receiving treatment I was standing in the deli section of the local supermarket. I started to feel very nauseated. So I thought to myself…. “I have only ever done that whilst I am pregnant….Surely I can’t be pregnant?...I havent’ had a period in nearly 2 years now!” I did a home pregnancy test. Sure enough there were two dark lines. I couldn’t believe it. I was in so much shock I rang and told my husband at work. That entire day he thought I was joking…until he got home of course. I had to get an ultrasound to confirm my dates. Sure enough I was a few months along. So here we go again. Little Mayeva was born. She is an absolute delight and seems at this stage not to be displaying any symptoms, nevertheless I keep a close eye on her anyway.
So fast forward a number a years. Olivia and Blair are in Year 4 at school. Olivia is an extremely bright child. She is loving, over sensitive and is a perfectionist. They say she is high functioning. Well yes she is. But she has to “act” and try harder at some things than other neurotypical children of her age. Blair on the other hand is much different. He began to have severe meltdowns from about the age of 3. He became so violent that we ended up getting him put on medication. I was absolutely racked with guilt. Not guilt out of finally having him medicated, guilt that I had listened to everybody else and not medicated him earlier. After he started taking the medication his meltdowns ceased. He could use the toilet. He wasn’t scared of “everything”. His anxiety levels went from a 9 out of 10 to a 2 out of 10. He still struggles daily with different things. He knows he has Aspergers and we talk about it when he wants to. Only yesterday he said, “Mum I can’t stop thinking about the world ending this year….bloody Aspergers!!... I think I’m going to go and try to meditate.” I had to laugh at his comment. He is now old enough and has the cognitive ability to understand that his current fixation on how the world is going to end… and his constant anxieties about the world blowing up etc… are due to him having Aspergers…. And that there are ways of trying to deal with these “worries”.
Nicholas on the other hand is a completely different “kettle of fish”. He has been the most challenging to say the least. I don’t even know where to start. After attending a number of different schools, my children (Nicholas included) have finally been placed in to a mainstream school which seems to have benefited them. Nicholas is a is a highly anxious child. He is very fit and strong and has good motor skills (which is not common with children on the spectrum). He loves to climb….anywhere. He has a speech/language disorder. He struggles to write and cannot read. He doesn’t socialise with anyone at school. He lives in fear most times, unless he is at home alone in his bedroom. He loves computer games, IPAD’s, Star Wars, Skylanders, Lego men…. Just the usual things these kids love. He doesn’t look at me or answer me when I tell I love him. He doesn’t like me to touch or cuddle him….only sometimes when it’s on his terms. He is abrupt and to the point. He primarily looks only after himself. On the other hand he can be extremely protective of his younger sister and at times can enjoy playing with his siblings (if it is something he is interested in). If he is having a bad day I drop him off at the library at his school in the morning. Sometimes he may jump around all over the furniture. Some days he will go absolutely ballistic ie; have an autism meltdown. You know the type of meltdowns Im talking about…..screaming, yelling, swearing, kicking, banging his head, saliva dripping from his mouth, him begging….begging for me not to go….to take him home. And this happens over…..and over…..and over again. And when I leave I have pains in my chest, I feel sick in my stomach and my hands are trembling….. but they tremble all the time when these things happen. Nicholas doesn’t like being out near crowds. I again discovered this other day when I HAD to just drop in to the local shopping centre. He completely lost control. I had to carry him….or drag him should I say out of the centre. He was in that “zone”. The only thing I could do was protect him and remove him from the situation and wait until the dreaded “meltdown” decided to run its course. The scary thing though was not Nicholas having the meltdown, it was the look on the other childrens faces. It wasn’t fear or shock as you would imagine….. they looked…. Well…….not surprised……you see this is the norm for our family.
Growing up I was always the child that had empathy for children who had disabilities or children that were less fortunate. I was always the odd one out in that sense – I always had this sense of maturity - I never teased or mocked those children. Funnily enough my husband said he was the same growing up. I consider myself a spiritual person. Was god preparing me for things to come..?..... My work life over the years was like no other. I worked for full time for nearly 21 years (collectively) firstly as an ambulance officer and then as a police officer. I worked mostly in general duties and spent some time in plain clothes. I only worked at a desk if I was pregnant… then back out on the road I would go when I returned to work. I have witnessed, investigated and even been a victim to horrendous crimes and incidences that are too horrific to even be posted about here. I was always one of those people that could remain calm in any situation. Train crashes, car crashes, plane crashes, murders, suicides, dead children, abused children….you name it… I have seen it…..all that horrible stuff that most people fortunately will never have to be a party too. But yet in all that…… in all how good I was at my job…… how calm I remained….. how clear headed and strong I remained in that work environment……all the “stuff” I had been exposed too….. absolutely NONE of that prepared me for what I have seen and what I have endured…. In watching what my children with autism go through on a daily basis – in particular Nicholas. Here I was a professional person….. a person who always wanted to have it “all”……kids and the career……I was such an organised person…….. once I could investigate a crime…. prepare a brief of evidence for court and have the person convicted………..yet now…………on most days…… I feel so bloody overwhelmed. I struggle to remember everything….the OT appointments, the speech therapy appointments…this appointment….that appointment….all the bloody appointments!. I have a really short fuse….. I hardly have any patience for most people. I struggle to read a book now. I’m tired…..always so bloody tired….whether it be from the mere stress of my existence….or Nicholas wandering the house late at night due to his insominia. I used to keep my house nice and tidy – now – well what can I say….Carol Brady doesn’t live here that’s for sure. My husband and I have a good relationship but there are just those days that all the pressure of living with children with disabilities takes its toll on our relationship. We haven’t had a date in….well years….. we haven’t had a night away together in ten years…. But we try and look forward and know that things will hopefully get easier….. and we just try and hold on until then.
All in all my life is hard on some days….. but then on other days not as difficult. If my children are having a difficult day….then sure enough that means my day is going to be crap too. As Professor Tony Attwood put it…”Some days the tide of autism rolls in and you know it’s going to be one of “those” days….. other days the tide is out….. and you just enjoy it whilst you can”. My husband is extremely supportive and I have been making friends with people whom funnily enough are living in the same crazy world as what we are (yes that’s you Teriann LOL J ). I have learnt many lessons thus far, and know that there will be many more to come. I am grateful for all the positives and know that there are many families out there who are struggling much more than ours. I always try to keep a sense of humour. I think I learnt that from being a cop for so long. That dark humour only people that work in emergency services, or hospitals, or those who are a constant witness to struggles in life such as ours. Humour has always been a great coping mechanism for me.
I have been completely honest here in this blog. I know all you mums/dads, carers of children with autism are nodding your heads whilst reading this blog…. Agreeing….knowing….only what we know. What I wish for though is parents out there who have neurotypical children to read this. I want them to know what our daily lives are about….. what these children with autism struggle with on a daily basis……so that you may then have just a little bit of empathy and compassion for not just us mums but more importantly for our children…..our special children....> So at 3pm when you arrive at your childrens school today, when all you well dressed mothers turn up to school to pick up your children…..all you fortunate mums who are calm…..content…you may have even just been to the gym?..….your house is tidy…..Whilst waiting for your children you’re thinking about that beautiful dinner you have cooked for your husband today that you know he will just love…...It’s then that suddenly your child/ren run out of their classrooms to greet you at the end of the day. They hug and kiss you and the warmth of them and the smiles on their faces make it all seem worthwhile. Your children begin to tell you what a great day they had….and you just can’t wait to get them home. Yet for mums like us….like me….. well it’s a totally different story……> I rush to pick my kids up in shall I say….a very messy car. My house is still not completely tidy and Im working out whether it’s going to be pizza or chicken nuggets for dinner – anything that is quick and that the boys will eat. I realise my shirt is on back to front – oh but who bloody cares. My bladder is full and I need to pee – but it’s going to have to wait. My hair is thrown back in a pony tail because it’s all I have time for. (Trying to get the two boys dressed and ready for school takes a LOT of time and a LOT of patience). The bell goes and I first see Olivia. She has had a good day…(thank god no social problems today)..…yep Blair has maybe not so much had a good day……I can see it in his eyes as he’s walking towards me…..He’s walking slouched forward….with tears beginning to well in his eyes….I can see he is about to have a meltdown…. I try and coerce him to the back of the school where it is quieter and nearer to our car…. I rush to get to Marcus and he hugs and kisses me – just like the other kids do with their parents. I want to keep holding on to him…. I savour it…. I hold on to him as long as I can…..because it makes me feel good….even though it’s just for that short time. I go to look for Nicholas….only to find he has taken off again…..maybe this time he will be hiding under the hedge……or hiding on the floor of the toilets. I finally locate him. The abrasions under his eyes are red again (he rubs his eyes constantly)…. His shoes and socks are off and his toes are bleeding again (he bites his toes when anxious)…. He looks dishevelled and worn out – yes just another day at school. He begins to talk to me as though he has seen me all day. No “hello” or hugs or kisses. I want to hold him….I want to hold him really tight…..to tell him I love him….to show him I love him and that I miss him. That’s but a fleeting thought. He immediately begins asking me about buying another Skylander…..I tell him we can’t buy one today….and so the meltdown begins.He drops to the ground, crying, screaming, writhing as if he is in pain. I try to calm him….pick him up…..when some of the others mothers are now staring at me……I can feeeeel them staring at me……..staring at Nicholas…….in shock….you can see by some of the looks on their faces that they think Nicholas is just plain naughty….having a tantrum. I just want to scream. I want to scream at Nicholas….. I know he can’t help it…… but it’s what I feel. I want to scream at those bloody people staring at us. But yet again I hold it all in, try and keep myself composed and I assist Nicholas to the car. He continues on with the meltdown. We start to drive home. I put on my sunglasses to hide my tears. I am crying because my son just had another difficult day at school. I am crying because I feel his stress…..his sadness. I am crying because I want my son to be………..happy……….just happy. And I just try to reassure myself that tomorrow is another day…. Maybe a “good” day if we’re lucky.