The one I never thought I would have the courage to share

Where to start…this was the holiday that had to happen I guess, if I was ever going to get around to writing the blog I needed to write. It’s funny how getting away from the everyday life somehow makes the everyday life so much clearer.

Never has it been more clear to me than on our Bali holiday that Lachy is ‘different’. I thought he would really embrace the Bali culture and chill out. Unfortunately Bali time just didn’t seem to agree with him. His anxiety first peaked at the airport and only let up for the rare breathers in the pool or playing computer games in kids club. Don’t get me wrong – he loved so much of the holiday, and had so much fun, but for us it was an absolute head fuck explaining all the things that were going to happen, that might happen, or that might not happen. Trying to cover all bases and have his mind clear about what was going on was just about impossible when we were running on Bali time as was everyone else. And when plans change for no reason other than your mum wrote herself off and started throwing her guts up, everyone else has a little chuckle but his whole world turns upside down. Good work Mum L I think it’s fair to say he could love Bali, could absolutely thrive there, but like everything else he is presented with, in his own good time.

So what exactly is it that is ‘different’ about Lachy? Apart from suffering anxiety, I’m not entirely convinced we’ll ever get a diagnosis that fits but here’s what we do know.

He was born the best little baby a Mum could ask for, slept through from very early on, batted his beautiful lashes and smiled at anyone and anything that caught his eye. A few people warned me that the good babies turned out to be the worst kids, I may have even passed on this info to others with good babies! His first word was ‘pider’ for spider and he spoke sooooo well at home and with close family and friends. Out and about he would rarely say much. He was reasonably slow to crawl (11 months) and walk (18 months) but he was so bloody happy there was really no need for concern. He was an overloved, perhaps overprotected and overcleaned first born! And it was a role he thrived in. I remember an old lady once stopping me in a park and asking was he a first born? She could tell and gave me a knowing smile – maybe she knew more back then…I certainly couldn’t see anything wrong with him.

 

 

Somewhere along the way he started to walk on his toes. We weren’t really alarmed, toe walking runs in the family and we assumed he would eventually grow out of it. He also started to develop his obsessions. Wheelie bins, aerials and wipers, washing machines that later turned into natural disasters and more recently storm chasing and computer games.

On the 30^th June 2007, three weeks before he turned three our whole family was sick with colds including a three week old Will. Elle came down to help look after us and I remember being so miserable about having to miss my End Of Financial Year work dinner because we were all so sick. I didn’t know how bad it was going to get – it still ranks as one of the worst moments in my life. I couldn’t get Lachy’s temperature to come down and after having tried everything I eventually gave him an icypole. I remember explaining to Elle that sometimes kids had seizures when you couldn’t get their temp down, I didn’t know Lachy would have one seconds later. I watched my little boy throw his arms up and start fitting, then slowly come out of the fit only to stretch his body out long like a surfboard. He was hard as a rock and white as a ghost except for his perfect lips that had turned blue. Kris was on the phone to the hospital as Elle and I raced into the car and headed there, I could barely fit my three year old surfboard in the back of the car he was so rigid and long. I remember Elle screaming at me to breathe in his mouth and start CPR but I couldn’t get his lips apart and I thought I had already lost him. When I ran into the hospital with him his body stopped stretching and gradually his colour came back and he folded into me. I laid him on a stainless steel bench and watched him gradually come around. I was crying with relief, I couldn’t believe he was breathing again.

He soon went back to sleep and was given more Panadol to bring the temp down and we got moved to a room for the night and eventually he woke up. As soon as he woke he started screaming at everyone. Yelling out ‘no’ to us, the nurses, the doctor and anyone else that tried to talk to him. Believe it or not at the time ‘no’ wasn’t really even in his vocabulary.  My sweet little boy was going nuts at everyone and all I could do was apologise and try and explain that he didn’t usually act that way. For me, that day was the turning point for Lach.  I just don’t think I ever fully got my boy back. I took him to a GP after a few weeks as I was concerned but she explained that the ‘fucking threes’ were much worse than the ‘terrible twos’ and we left it at that. Having had two more kids hit the fucking threes I couldn’t agree more with her analogy but I still maintain that that seizure changed him.

Anyway, we just kept plodding along at that point, Lachy continued to amaze us with his speech and knowledge despite a few months of speech therapy after he developed a stutter and shut down from communicating all together. Will too, developed the 3 year old stutter and we did the same therapy successfully with him. It will be interesting to see if Ems too, does the same.

Then when Lachy was 4 we moved to Harvey. He started kindy and from all reports was a happy but quiet kid. We knew then he was not going to be a sports star, he had yet to ride a bike, or kick a footy, or swing himself on swings but he was happy and theatrical and seemed to love life. And that was all that mattered at 4.

Pre Primary came in 2010 and with the wonderful support of his teacher we started looking into his ‘differences’. He was unable to skip or hop and often complained of leg aches and his general gait wasn’t quite right. He still walks like Sid the Sloth from Ice Age but he gets upset when we call him Sid so we’ve backed off on that one. So the appointments started in July 2010, at 6 years of age when I took him to a physiotherapist in Australind about his legs. He told me how tight Lachy’s calves were and gave us a few stretches to try but referred us on to a sports medicine specialist in Bunbury.

A few weeks later Lachy and I attended the sports med appointment and he told me that 99% of toe walkers are habitual ones but in Lachy’s case he felt it was neurological. He requested a spinal X-ray to rule out any problems but referred us to a neurologist in Perth. Then he grabbed my knee and asked me why I wasn’t crying given he’d just told me something was probably wrong with my son’s brain. I guess it was the news I had been expecting…so it wasn’t upsetting, plus Lachy was with me and I’m always telling him ‘crying doesn’t help’ so I try and practice what I preach! He went on to explain how tight Lachy’s leg muscles were and what stretches we needed to do to improve his tone and flexibility. Before driving home I called Kris and then we cried. Lachy just looked up at me blankly and smiled and the guilt started to eat away at me from then. Our sons legs were in trouble and we thought he was just a bit different, a bit unco and suffered from growing pains. We didn’t have anything to compare him to, he was our first, our test kid! And aren’t all kids different? Why focus on what he couldn’t do, we had tried to focus on what he was good at.

 

Fast forward a few crazy months of consulting Dr Google and it was time to see the neurologist. He eventually confirmed the suspicions and after a clear spinal MRI, a clear brain MRI and a clear EEG Lachy was diagnosed with mild spastic diplegia (probable cerebral palsy).  We were pretty shocked, we were expecting to find he was on the autism spectrum so the CP threw us off track a little. We were put on a waiting list to access Botox through PMH (we are still on it!) and referred to physio to start daily stretching. The first night home we hit Dr Google again and there it was: Mild CP symptoms include toe walking, ‘teddy bear’ hands and a different gait. How did we miss it???

Lachy had no idea what was going on and cried through most of the tests (as did I). I wanted to make it all stop for him but at the same time I was painfully aware of how lucky he was to be him, and how lucky we were that this was all we had to worry about. That said the months that followed were tough. He resisted his stretches and started becoming increasingly negative about all the things he couldn’t do. As the one that took him to most of his appointments, usually with the other two kids in tow, it wasn’t pleasant. He started to really resent me and withdraw. I still remember towards the end of 2010 falling in a heap with my best friend because I didn’t know how to love him anymore. It was hard work staying positive when all I got from him were negatives and crying and “ I hate you”. It felt so personal too, he still seemed OK with everyone else and he would get a bit emotional at school but still seemed to be hanging in there too.

In 2011 we stumbled through the year as best we could. Academically he didn’t do too well but he had a wonderful teacher who was happy to let him be. She suspected he had learning difficulties but insisted he was a bright boy. Over and over it just seemed that he needed time. Time to understand, time to attempt, time to retry, time to finish. There was just never enough time for him. With Emme now 1 his life at home was much the same. The once overindulged first child had two younger siblings to compete with for time and it just didn’t suit him.

In desperation one day I called the social worker at the CP centre – that phone call led us to a private orthopaedic surgeon who ended up starting Lachy off with Botox. This treatment is still happening now. Every 4 months we head off to SJOG Subiaco and have to hold down our boy with the help of several nurses and doctors as he is terrified of going under. He cries and screams and eventually passes out and we stroll down the hallway, make a cup of tea, and then stroll back down to recovery. It is a horrible day, one that I’ve managed to let my father in law, and Kris take from me on two occasions. It’s not a nice thing making someone else do the holding down, and I’ve definitely toughened up over the years but some days I imagine him as my little perfect newborn and just want to whip him off the table and run out of the hospital with him and never go back.

At the end of 2011 I started to think he was actually ‘depressed’ and sought help from a counsellor. She told me to go home and take half an hour out of each day for myself and then took my $170. I was so fucking angry! What mother could you NOT give that advice too? And I didn’t have a way to get half an hour a day anyway.

 

2012 rolled on and will go down as the worst year in my life to date. Lachy withdrew so much, the pressure of dealing with him meant Kris and I started looking for outlets for release. It back fired big time. Between our sport and commitments and the kids never ending ones we literally just passed in the hallway most days. We could feel each other pulling away but were reluctant to communicate enough to deal with it. After all – the situation seemed hopeless – we were at a loss as to how we could make it better.  After 14 amazing years together, we found a crack in the relationship and the few conversations we did manage didn’t go so well. Lachy was hard work, life was hard work, our marriage was hard work! Insert the Amberley bottle here!!

In fairness I’ve always liked a drink or six but I wrote myself off (a lot) trying the escape the realities of an unhappy house. In July we decided that for Lachy’s sake he really needed one on one and we just weren’t finding the time. He had started counselling and eventually we realised we needed some ourselves. We were at the point where living apart was feeling like a viable option. To keep Lachy happy one of us would have him, the other have Will and Ems and we could swap each week. The problem was, we loved each other and wanted our future together. Insert marriage counselling here!!

Our counselling sessions were probably the best investment we made in our 15 years together to date. We covered so much in those sessions that always led to better communication at home afterwards. We knew we wanted things to work out, we just didn’t know how to get there without doing any more damage.

Gradually as 2013 approached, our mindset changed. We felt more in control, we made some decisions that felt like they would change our life for the better. Then on the 8^th December I wrote myself off one last time and two days later dragged my bruised and battered body to a paediatrician to find out the results of his latest psych testing. The paed basically talked to my bruises…I’m still waiting on a call from DCP. Mother of the year had hit her biggest low and it led to Toni begging me to stop drinking and find an outlet – blogging it was!

As soon as the calendar flicked over to 2013 I breathed a sigh of relief. 2012 was over, our marriage I thought was going to be OK, we had made some decisions about Lachy and our family life that we felt would help. I guess there is a lot to be said for positive thinking – so far 2013 has been 1000 times better than 2012.

We have seen another paediatrician – it’s our last chance to plead his case and request a diagnosis. Ultimately the outcome of the diagnosis is meaningless to us. We know our son, we try and manage him the best we can, make his life as smooth as we can, but if someone in the medical profession would just back us and WRITE SOMETHING ON PAPER I think I would do a FUCKING CARTWHEEL!! OR THREE!! I am trying not to get my hopes up. I go from one professional to the next – just hanging on – keeping on going and counting down weeks and days til appointments. I don’t have much left in me to give. I will not seek another opinion after this.

I remember in one of my meetings with the CP association they took Lachy off to do some physical assessments and left me talking to the social worker. I cried through the whole appointment and remember apologising to them for it. I should NOT be crying, my son is lucky, I am lucky, our family is lucky. The social worker let me cry and then let me cry and then let me cry. Eventually she explained that kids with ‘mild’ disabilities often find it harder to find their place in the world because people don’t necessarily ‘see’ the disability. The last few years this has seemed so sooooooo true!

We have had some wonderful physios, OT’s and counsellors along the way but all in all I’ve lost a little bit of faith in the system. It’s just been one disappointment after another, and I really feel for other parents in this ‘mild’ boat. I am exhausted with phone calls and appointments but know I have to just keep swimming.

It wasn’t my intention for this to be a big whinge…seems that’s all I’m good for some days. There is so much about Lachy that I haven’t even touched on yet. His splints, his horse riding, his oddities and obsessions, his love of minecraft and tornadoes and storms in general….and what made me decide to finish this tonight? Not that I could ever fully be ‘finished’. It’s simple really: Today was one of the hard days. The days when it is so blaringly fucking obvious that Lachy is autistic that I want to scream for help. I want a sign on my head, and his, I hover over the Facebook ‘what’s on your mind’ and type subtle screams for help, only to delete them before I hit post!

Today at horse riding his usual team of 4 helpers turned into 8! 8 people required to help one kid cope with turning around on a horse. His fear, his anxiety and his sensory issues all compounding. Tears streaming, arms flapping and fists locked in defensive mode. 8 people and Sunshine the horse eventually worked together and ‘made’ him turn around while Will and I sat on the edge and watched. Yes I cried – but I know it will help him…won’t it?

Mission accomplished – he did it… then it was on to the dentist. The appointment started amazingly well until she wanted to squirt some green stuff on his tooth. Ten minutes of coaxing and reassuring and practising and sniff testing and we eventually got there.  I forgot to mention that I wanted to punch a man in the waiting room for the dirty looks he was giving me when I kept asking Lachy to back off me. He was in my face, in my space, asking the same questions over and over and I was DONE! Sometimes I give myself slaps and dirty looks too but I knew what was still to come for the day. I knew it was tough love time…I know my boy… I know my life.

So yeah, today was tough, but most days are in some way or another for any Mum. I am lucky to be me. I love my son. I hope one day he conquers his anxiety and ‘quirkiness’ enough to live in the real world. I hope he has a brighter, healthier and happier future than I could ever imagine. I hope he loves someone as much as we love him.

Most of all – I hope I get glimpses of my boy back over the coming years and I hope one day he hugs me tight and meaningfully and never wants to let me go. And I hope I have the compassion left to hug him back with all my might. I miss my boy.

 

Pics by Timeless Memoirs: 

 

 

 

I often sit in my hallway and stare at these photos of Lachy and I. It helps take away all the tightness in my chest, all the stress and frustration and anger of the day...and most of all reminds me that he is my beautiful boy...and that my world is as it should be.