Trust the process

We’ve been through a tough time lately, our family. Some are more aware of the details than others, because they’ve been there in the trenches with me. Boy 2 thankfully has been happily enjoying life at boarding school, so has been spared from most of it.

I’m looking at options of how best to proceed, but I have to tell my story right now, today, because it sits inside me and it’s fucking seething and furious and fighting to get out. All the time. And even my husband said this morning “Sweetie, just write about it, even I’m getting kind of sick of hearing it.”

So when I last wrote, we were only just starting to understand Autism meltdowns/burnout. Well, no, that’s not true. We didn’t understand the first thing about it. Most of what I now know I have learnt post crisis.

Jack has had 3 meltdowns since he turned 16. This last one lasted 5 days, 5 days and nights of pacing and roaring and shouting and raging. We were exhausted, beyond worried, and in complete despair. We were advised, and as parents, decided as a couple that it was time to try the Psychiatric route. While I deeply regret this decision, it’s not because I’m anti-medication. I’m not, and have myself been on anti-anxiety medication for years. I have seen medication help a lot of people, and I’ve seen the devastating consequences when they decide to come off their meds too.

So we check into this facility, right? One where I can stay with him, be with him, while we figure this out. By there was no time taken to figure out shit, no screening and assessment. An appointment with me and (I shall call her here, for purpose of anonymity) Dr X. Where I tell her about Jack’s ASD, the full history of the meltdowns and the apparent triggers. And by the time I get back downstairs they have started medicating Boy 1. Not a bit of a sedative, mind you. Full fucking, balls to the wall, injections and pills and Lord alone knows what.

I am so deeply uncomfortable with it, but am a mother in crisis, who has now handed herself over to the professionals, the Psychiatrist with 30 years experience. This fact is mentioned often, whenever I try and question anything. I have been told “We have to shut his brain down, so it can heal”. And as much as that doesn’t make sense to me, I am constantly told “You have to trust the process.” So I try, and I do.

My child becomes a zombie, in the true sense. Constantly walking, pacing, not sleeping, but also not awake. And I pace with him, because he is so drugged that his eyes are closed and his mouth is slack and I just can’t fucking take it, I can’t take it, I can’t take it. My son has never hurt anyone, never done anything criminal, never broken or destroyed furniture. He was a child in the midst of an emotional dysregulation episode, surely all this can’t be necessary? Trust the process, trust the process. We checked in on Tuesday and by Saturday I could take no more. I begged the nurses for a doctor to come and see my child in person, please please I beg of you, this can’t be right.

Being a weekend, and Dr X not available, the Dr on duty come to see Jack. Immediately he recognises that he has developed Akathesia, a movement disorder side effect of the medication, and instructs the nurses to take him down from (I believe, I speak under some correction, because the nurses wouldn’t give me his files. That’s right, they wouldn’t) four anti-psychotics to one.

And I like this doctor, I get a good feeling from him. And so I tell the nurses the next morning, I would like to change doctors. I don’t understand what we’re doing here, I don’t understand what we’re supposed to be treating, I want a second opinion. Oh, no, they say to me, with big scared eyes, you’ll need to speak to Dr X about that.

By the time Monday comes and I see Dr X again, Jack is calmer. And again she says, trust the process. And interestingly, directly after, says “You’re making me feel like a fake.”

I am red flagged as difficult, crazy mom. And that’s when the real shit starts.

Two nights later crazy walking dead zombie Jack is back. I say to the nurses, I cannot have you give my child that anti-psychotic tonight, I just cannot, surely this is my right as a mother, to question what’s going on? They say they can’t allow a change in medication without consulting Dr X. So, as I’m sure is hospital protocol, the nurse disappeared into an empty ward with the phone to contact Dr X. I’m literally begging to speak to her myself, but apparently that’s not allowed. So I did, in fact, storm into the room and grab the phone from the nurse’s hand. The nurse looks fit to faint from the shock, it’s apparent that everyone is terrified of Dr X. And I say listen lady, I am not fucking happy with this situation at all. And then I am told the following….

Mrs Kastner, you have done nothing but cause trouble and question my decisions here. You will follow my treatment plan, as prescribed by me, or you will leave. But I promise there is not another facility in this province who would take in you and your son right now. And you WILL NOT see another doctor at this facility.

There, just like that. By which time every fibre of my being is wanting to get my son the hell out of there as fast as I can. But I cannot, he is a zombie, and I’ve no idea what I’ll do with that once we get home. I am stuck, we are trapped. We are trapped, and my heart is breaking for my child.

I go outside and sit in the garden and I phone Sensible Sister. She’ll know what to do. And she is calm and measured, as she always is, and also outraged and horrified. But together we decide that I cannot, at this stage, be thrown out of the facility, I have to see this thing through. At this point, I have no choice. So I write a sucky-uppy whatsapp to Dr X, apologising for interfering with hospital protocol blah blah.

And I lie on the mattress next to my zombie child and I cry and cry and cry. On day 11 I finally allow my husband to visit. But I meet him first for coffee, to try and prepare him for what he will see, and I know he’s not going to like it. And I see his heart break when his boy doesn’t recognise him, and he tries to take him for a zombie walk outside, but my boy can’t climb a couple of stairs. And I say to him, I know, I know, I’m so sorry, but we’re in this thing now, and we have to trust the process. And he is heartbroken, shattered, but he agrees. We made this decision together, we have to trust the process.

On Day 12 suddenly I see a little bit of Jack, and I am just so relieved and so fucking excited. He asks for pizza, and I arrange for one from the restaurant down the road. And he eats the pizza, and I get him a Coke Zero which he isn’t usually allowed, and I’m so grateful that he is kind of speaking and I can kind of understand what he is saying that I weep with relief.

Day 13 dawns and he is a little bit more awake. And we are told we can be released. And I am so tired, and so sad, and so homesick that I say, fantastic, what great news. A final goodbye to Dr X, and a pile of pills to give Jack when we get home. With no explanation of what they are, what we are treating, what diagnosis, what possible side effects.

And, as bad as that story is, it’s about to get a whole lot worse. That is when the nightmare really began.

Day 1 and 2 back home we were cautiously optimistic. Little bits of old Jack, interspersed with really mean stranger. But by day 3 the shit really hit the fan. Jack went crazy, constantly shouting MY BRAIN IS MELTING, I want to kill myself, I want to stick a knife in my heart. And I try to phone Dr X, I leave messages, I send whatsapp’s which are blue ticked but never responded to. I beg for a second opinion, for some assistance. I then send an email, cc’ing everyone who worked with Jack while we were at the facility. And Dr X replies to all. “I am treating him for a differential diagnosis of Bipolar disorder and/or temporal lobe epilepsy. Add another pill, I will forward the prescription.”

With every pill we give him, Jack gets worse and worse. And we can’t just stop the meds because we don’t know what that will do either. In the meantime, I am phoning like every Psychiatrist in the country, like every single one, desperately trying to get an emergency appointment. And no one can see us before July.

While still leaving desperate messages at the facility, for Dr X to call me, for any fucking Psychiatrist there to PLEASE PLEASE CALL ME. I need to get my son off this toxic shit, but I need to do it safely. My child is suicidal, this is new behaviour, and it’s escalating. Please, please call me. And I get no response. Nothing.

How can this be? On all the medication it says “If you are seeing any side effects contact your doctor immediately.” How can this be?

Through a family member who is a Dr I manage to get hold of another Dr by phone. He says the child is having paradoxical effects to medication. (I have since learnt this is more likely for the neurodiverse brain, and therefore should be especially carefully monitored.) His ridiculously high doses of sleeping medication is making him unable to sleep, his anti-psychotics are making him psychotic. We need to get him off these medications immediately. And he consults with his Psychiatrist colleague and they advise me by phone which medications I can immediately remove and which I need to gradually reduce. And I grateful, so so grateful to this man who took an hour out of his Friday afternoon to get the full details, who gave me his home telephone number in case I needed him and his cellphone was on silent in the night. And he says “You do not have to thank me. There is a child in crisis, and this is my duty.” He is a real doctor.

And by day 4 off the medication my child is back. And I get down on my knees and I thank God, for getting us through this.

And an angel network of special needs moms gets us an appointment with a psychiatrist. Who advises against medication for now due to Jack’s sensitive brain and does a full 90 minute assessment. Asks all the right questions and takes every element into consideration. And rightly says there is no reason to be treating for Bipolar, or Epilepsy at this point. Autism meltdown/ burnout with some other insightful diagnostic details, proper referrals to professionals who can help us to ensure it doesn’t happen again.

And we are working on it, every day I am learning so much. About my child, the various challenges that come with ASD, how to help and support him through the difficult adolescent phase. The stars have aligned, the miracles are happening, the butterflies and lighthouses are showing me the way.

This particular earthquake shook our world so hard. It turned it completely upside down. And as the pieces fall back together, they fit differently. A new path is unfolding for me, for our family. I have met incredible new people, am entering a whole new world. I will learn everything I need to know, and I will share it with other parents of Neurodiverse children. The gift of every ordinary day holds new joy for me, I see the blessings of my life with fresh new eyes.

And this process I trust. My child is on no medication, and he is lovely. He is not sick, he does not need to fill his mornings and evenings with pills. No one, NO ONE, will ever again put anything in my child’s body that I have not researched properly, and expressly approved.

This last lesson was a hard one, and I wish we didn’t have to learn it. I am focusing on my family, on healing our trauma and steadying our boat. But one way or another I will ensure that Dr X is not allowed to do this to another family, ever again. You cannot just zombie people up, so that you can fill your expensive private clinic beds, and then cast them adrift. I will not be quiet, and I will not just go away. Because I can be a feisty one when I am messed with. But you ain’t seen nothing yet until you have messed with my child.

Still no word from her, by the way. Not a word.

Could you even believe it?

This one’s for you, special needs moms

I have no idea how to make this blog look pretty, my technology skills are that of a 5 year old. No, scratch that, a five year old could probably build a lovely blog, with pictures and all sorts. Maybe even some little videos, or tiktoks, or some other genius intraweb tricks. Sorry, these are not part of my skillset

But I do have some things I have learnt, and some things I need to say. I have been through some times in my life that I wasn’t sure I would survive, and right now I’m in the thick of one of them. A while ago I decided to give up writing for a bit. You get kind of bored of your own self harping on about your own problems. I do still get requests for my book, and more importantly I get messages from people who genuinely feel that it helped them through their own hard times. That’s gotta be worth something, right?

And what I’m going through right now I suspect may resonate with a few.

Right from birth, right from diagnosis, right from the minute it’s apparent there’s a problem of sorts with your child, it becomes all consuming. For those of you who’ve been there, I don’t need to go into too much detail. The different therapists, the invasive testing, the MRI’s, the CT scans, the EEG’s, the home programmes, the ABA therapy, it’s fucking endless. It wears you down, especially when you realise that nobody has all the answers. A neurodivergent brain is a very unique thing. As one of the last professionals I consulted said “If you’ve met one child on the autism spectrum, you’ve met one child on the autism spectrum.” So the lack of manual, for yourself and any of the professionals, is alarming and devastating. So you just kind of muddle your way through, doing the very best you can, and pray for a good outcome, for your child, and for your family.

It’s tough on your marriage, and it’s tough on your family. They call them glass children, you know? The siblings of the one with special needs. Not because they are fragile, but quite the opposite. They feel invisible, not seen, as all your attention and focus is literally drained from you. They become withdrawn, and kinda retreat from the family, and just get on with their lives as best they can. And you try, you really try, to distribute your attention better, but often it’s just not possible. Not physically, not mentally, not emotionally. It’s. Just. Not. Possible.

So there’s a nice little bit of mom guilt right, which sits like stone in the pit of your stomach.

And then there’s the opinions and judgements of others. As moms, we often feel judged. As special needs moms especially, I’m sorry to break it to you, but it’s not your imagination. Firstly there’s the judgement of what you must have done or not done or done terribly incorrectly to cause this condition. And you kinda want to wear a t-shirt that says “He’s Autistic. They checked, okay? The did all the fucking tests and it’s not my fault.” In fact, I may start to produce these t-shirts. Could be a lucrative side-hustle.

And ,if they’re not judging you on the cause, they certainly judge you on how you deal with it. “It’s because they give it too much attention/ not enough attention.” “They are putting too much pressure on that child/ they are not pushing the child hard enough.” Oh, honey, I’ve seen and heard it all. Not said to you directly, mostly, because who would do that? But my journey with special needs has been a long one, and I have heard a million different versions, on a million different days.

And you take things day by day, and you try and ignore it, and you continue to love your children as much as you can, and do the best for them. But sometimes, and hence this particular blog, you just don’t know what that is.

It’s not been a picnic, that’s for sure. But at 16 years I had managed to raise a happy child. Well-mannered, much loved, a healthy sense of self esteem, an interest in the world around him, and empathy for the people in it.

And then. There it was. The fuckening.

Meltdowns are part of ASD parenting that few can understand. A handy thing to remember if you are a mom of typical children, is that this is not the same as a tantrum. It is like comparing a sore toe to a foot being amputated without anesthetic. They cannot control it, and once they are in it, you cannot reach your child. You cannot reason with them, bribe them, punish them, cajole them out of it. It is often impossible to identify the triggers, no matter how hard you try. If you identify them, you could try and avoid them, right? But it’s often a really complex mix of factors.

We’d learnt all the tricks, been to all the training, done all the reading and all the research. And we are damn good parents, who understand how to calm, how to distract, how to redirect, how to soothe. We fed the right food, we followed a good routine, and we gave all the right supplements. As we learnt more, we kept trying harder. We have a local team of experts, a traditional medical doctor who specialises in ASD, a psychologist and a holistic doctor.

And suddenly, it felt like overnight, nothing worked. When meltdowns came, they were so severe that it became impossible to live a normal life, to have any sort of home normality, to hang onto the teeny tiny bit of sanity you have. When that time came, our regular professionals all said the same thing….this is beyond my professional scope of expertise, you need Psychiatric intervention.

For 16 years, I had never chosen to medicate my child. I still don’t choose it. I am deeply and desperately conflicted about it every single day.

But it feels like it was no longer a choice. We were a family in complete crisis. And as my husband (lifelong non-believer in the medical profession, total rebel against big Pharma) wisely said “I guess that’s why they don’t have Homeopaths Beyond Borders”. Sometimes, you have to make a big scary choice.

We went a facility for 2 weeks, Boy 1 and I. It was a hellish time. When your child’s brain short-circuits it is a really scary, really heartbreaking thing to witness. Most facilities don’t accept the parent with the child, as it’s so traumatic.

But we found one which did, both a blessing (how could I leave him to deal with this alone) and a curse (man, did I fight with those doctors. I questioned their every decision. I wept and I wailed and at times I raised holy hell. I educated myself as well as I could on the medicines, their benefits, their side effects. Doctors LOVE it when they get a mom like that, they really do. One whose google research reveals all kinds of possibilities, all kinds of theories. They just love it. Suffice to say, I was not winning awards as most loved mother in the place. But at some stage, if you decide that this is something that you need to try now, you HAVE to trust the professionals, you have to trust the process. You have to. You have to stop fighting. But, man, is it hard.}

So that’s where I find myself now. I love my children (including my glass one) with every fibre of my being, I would do anything, anything for them, for their happiness.

But right now, with Boy 1, I sometimes find myself with a strange teenager living in my house, a total stranger who is often not even likeable, much less lovable. I give him all the pills I’ve been told to. And when things are good I get so excited and every part of me wants to believe we’ve turned a corner. And suddenly, when they are bad, I feel entirely bereft and hopeless. Utterly, utterly hopeless. And the doctors say trust the process, it will take time. And my brain says “You have to listen to them” and my heart says “What if they’re wrong? What if this path is making everything worse?”

And you watch so closely, it’s constant and exhausting, the monitoring, the worrying. And it gets so confusing, because my child ain’t no fool, and he’s realised that certain behaviours get a kind of “all eyes on me” attention. So which of these behaviours are involuntary, and which are of them are attention seeking? So which behaviours need patient love, and which require consequences?

There is not an expert in the world who can help you with that. And so your family has to go it alone, and figure it out.

Only those of us who have been there, in the trenches, will ever fully understand. And I guess that’s my point. I need to reach out to other moms who have been there. I need your advice, I need your support. Most days I feel like I’m losing my mind. Do you hear me? Because we need to help each other. My heart is breaking. Every. Damn. Day.

If you’ve been in this situation, please reach out. You can comment, or you can send me a mail to jkyeats13@gmail.com

I can’t promise I’ll respond. I can’t even promise I’ll get to reading it right away. But damn, special needs sisters, surely SOMEONE out there has some answers?

In the meantime, I continue to pray. I continue to remember to breathe. And I continue to love as hard as I can.

Sending you all love, and above all, strength. Lord knows, we need it.

Love Jami, desperate and exhausted mom.

xxxx

The Boy with the World in his eyes…continued

This last year has been a happy one, productive and successful. A year of healing and of building up my strength. But also a year of feeling lost, rudderless, adrift.

Every now and then, like just more than a year ago, you see your special needs child “regressing” or a new and worrying behaviour emerges, and you start your frantic search of groping around again. How do I fix it? I must fix it. It was off to equine therapy, craniosacral, colours, every alternative healing modality you could shake a stick at. (including some stick shaking). And it was off to specialists in CT and ear specialists and there were investigative operations on ears and then further operations on ears and allergy tests and medications. So many medications. Oh, such a merry go round. And I panicked and I lost faith in myself and I was tired and scared and not coping. I was en route to burnout, I suspect.

I got so much advice, so many readings and most of it said this….do not fear. Jack is on the verge of something big. He is a huge spirit, there is currently a shift, he is about to make a big change. But it is good, and do not fear.

Then the Universe gave me a chance to breathe, to take myself out of the panic and see the golden future more clearly. This came in the form of Jack’s paternal grandfather and his wife. They both love and adore Jack. And they could see that we needed help. They took him to see every top doctor in JHB, but, unlike me in the past, they did not follow the traditional route, but rather a homeopathic one. Chinese medicinal supplements of every description. And a series of alternative therapies to accompany them. They identified a wonderful facility where Jack could board, and come to them on weekends. A place where he could learn independence. I never ever thought this was possible, that my boy would cope out in the big world, or that I would cope without him.

I went to stay with him in JHB for a week while he attended school in the day and I couldn’t believe it when he told me he wanted to stay there. I couldn’t believe it when, on day 3, he told me I didn’t have to walk him in. He’s been so big, and so brave. He is the most insightful child that I know.  

But on a deep cellular level it’s been hard, an Herculean task to move that boulder off my shoulder every day, and focus on something else. “your child is not with you he is very far away and sometimes he sounds sad and you know that he can’t verbalise his feelings and how is he really feeling and my child is so far away this doesn’t feel right he is too far away.” I felt like I’d just handed him over, given him away. But I saw, too, the growth in him, the independence. The physical changes are incredible too. And Lord knows, I have never really understood alternative medicine, and therefore perhaps not taken it seriously, but these treatments and supplements will very much remain part of lives in the future. But Joburg was never a forever plan…

When I heard Jack was coming home I just burst into tears of joy. I hadn’t let myself feel how hard this last year has been. I couldn’t. What would I do with those feelings, if it truly was the best thing for him right now? Selfish mother, would I tell him to come home? Because I need him?

But the hostel Jack has been staying at is closing indefinitely and cannot confirm they will reopen. My boy is coming home, and every day that it becomes closer to being a reality the more I allow my heart to fully reopen to it, and embrace our reconnection. To reach out to my son and teacher and say, it’s okay to come home. We love you and we miss you and you belong here with us for now. And it’s not because you have failed, or we have kept you from having the opportunity, it is due to circumstances beyond our control. You’ve had the most grand adventure. You have done the heroes journey. Oh, but you and I know my angel child, we are meant to be doing some big stuff together right now. We never know what the future holds, and when the time comes we will make sure you have options, and choices for that yourself.

Jack is beside himself with excitement, phoning people to tell them the good news. Not that he hasn’t been happy there, but that I know right now he will be happier here.

His friends at the Butterfly Centre can’t wait to see him, and he can’t wait to see them. The grandparents back here in Stanford are besides themselves. All who love him here on the farm and in our little home town have missed his giant presence.

Jack is amazing and doing great, but academically it continues to be a struggle. I spoke to his teacher in JHB and, I shan’t tell his private details here but we are not aiming for matric here, folks. I have always been afraid to say that, like I am limiting what I believe my child is capable of. But it’s not like that, see? Sometimes it’s about meeting your child where they are at. I am in no way and have never placed limits on my child’s potential, I just know who he is. Jack may yet get matric, no one would be happier than I. And we will give him every opportunity to do so. But if he does, it will be a side gig. It will have no bearing on the who he becomes, and his work in this world.

Next Sunday when you wake up my boy, on the morning of your sixteenth birthday, it will be in your own bed. With your mom and dad in one room, and your brother in another. You’ll wake up, this young man now, in your newly improved bedroom. Very teenager room, not a little boy’s room. In your home. We will have a traditional Kastner sandwich cuddle,all 4(5) of us and some tea, and my heart will feel very full indeed.

Can’t wait to see you, my boy. Will ensure promised new duvet and fluffiest blanket will be in place as requested. Oh, and also the new torch and lunchbox and all new stationery.

Love Mom x

PS. Alex rarely gets a mention as he prefers it that way, being a teen and all. PS. Doesn’t mean he is any less important or loved. He is happy and thriving. But I would like to say this…Jack has always had the smaller bedroom, closer to us. Isn’t that weird? Alex has always just been so much more independent and I guess I worried about Jack and wanted to keep him close. Anyway, Alex volunteered to move to the smaller room, and let Jack have the bigger room. Where the X box is set up, mind, so this is a VERY BIG DEAL. And now we are going to do it up for him and make it awesome as a surprise. What a very wonderful brother you are, Alex. xxxx

Rainy Tuesdays

These last weeks have been both wonderful and heart breaking, ever since my friend Y came to visit. She specialises in child behaviour and working with special needs kids, and has been very important in Boy 1’s life. I value her opinion greatly and was excited to get her input on the Butterfly Centre (which is really truly actually happening now and it’s all so exciting and wonderful, but that is a topic for another post). While here she did some work with Boy 1, amazing new techniques to help access the root cause of issues. While here, she offered to work with Boy 2 for a bit as well, and that is where something really huge took place.

My poor, poor boy. He has finally been able to open up to me, to allow out all the sadness and the fear and the questions. Y worked on accessing what she calls the “grungies”, the bad thoughts and negative conversations that constantly plague us as human beings and on getting them out.

Some of the conversations we have had made my heart bleed, I could feel the pain so deeply, so profoundly. I have managed to hold my own pain while allowing him to access his, but it has been intense. I have cried more these last weeks than I have in months, which has also been no bad thing. Your own suffering is nothing in comparison with seeing your children suffer.

So many questions about you, Sam, about how you left, about why. You think a three year old won’t remember much, that he won’t miss his little brother with every fibre of his huge little soul? Now six years old, that longing is just as deep. To finally allow and speak about how hard it is to have a big brother who is in so many ways your little brother, and how confusing it is. Jesus, how heavy it must have been this last while, fearful to voice issues which may upset others, how lonely carrying all those massive grungies around. It has been a time of acknowledging how hard this all is, not just for him, but for all of us. Every. Single. Day.

But (and here is the good bit, for every cloud there is a silver lining and there is always sunshine after rain) my little boy is sparkling. His eyes are brighter, his words kinder and his energy lighter. He is loving and he is accepting of his brother in a way that is new and very healthy. We have had fun these last weeks too, dropping everything to spend time together wherever possible.

On Tuesday it was really cold and stormy, and I was tapping away on my laptop with the boys bored and harassing me, Hubby out on the farm working.  One thing about living in the country is there’s not much for the kids to do when it rains…no malls, no cinemas, no indoor skating rinks. I put down my laptop, thought “fuck this for a lark”, and piled the boys into the car with towels and swimming costumes. We drove to the Caledon hot springs about half an hour away, stripped off our clothes and leapt into the steaming water. The rain poured down and created beautiful mist hanging just above the surface as we laughed and watching our fingers and toes turn to prunes, the boys running out in the freezing rain and then jumping into the hot water.

Yesterday it was Boy 1’s birthday, such a joyful day from start to finish. We had a Mister Maker party and made art and pizzas. Boy 1’s best friend from school, L, who happens to have Down’s Syndrome was at our house for the first time and he was so excited to show him off to all his Stanford friends, arm in arm “Dis is my best friend from school” and everyone shook hands most politely.  We blasted music and the children danced on our huge dining room table, all of them together, all hauling out their best moves. Each one of them beautiful, special and unique.

This is our path, and it is not perfect, not by a long shot. But you can be damn sure it’s going to be interesting, and we are going to love our way through it. Because there is one thing we know very deeply as a family, and it’s so important for everyone to remember. Sometimes you have to say fuck the bills, fuck the deadlines, fuck the phone calls I might miss.  In the words of one of my childhood heroes, Ferris Bueller…life moves pretty fast. If you don’t stop and look around once in a while, you could miss it.

Make the most you possibly can of every single day, even the rainy Tuesdays. Especially the rainy Tuesdays.

The Magic Carpet Ride

 

 

 

Towards the end of last year there was a play. Jack and his class were the first performers in an auditorium full of parents whose (mainstream) children also participate in the Helen O Grady drama academy. A little girl with severe Cerebal Palsy, wheelchair-bound, opened the show to a deathly awkward silence from the audience. Things which are different are often scary, and that is a fact. But as each new beautiful child joined in and became part of the story you could see and feel everyone relax. The girl was lifted from her wheelchair and placed on the magic carpet, and so was transported to a different world. A world filled with beautiful butterflies, little girls with a variety of challenges, dressed and sparkling their own special light into the world. Then came Jack and his friends, the superheroes, who swooped proudly in to save the butterflies from danger.

Jack had one line, which he delivered with such gusto that it came out a great big shout. And, God, was he pleased with himself.

The audience stood to cheer the brave children, and we stood clapping and crying, with brother Alex cheering loudest of all. “Go Jack!”, he shouted proudly. It’s not always easy for Alex, and we are acutely aware of it. But he is amazing and their relationship is developing in it’s own beautiful way.

I saw a few things that day.

I saw a girl who is often invisible in this world transported to a place where she was not just seen but praised and celebrated.

I saw girls shine with a beauty which is perhaps often overlooked by the world, a chance for them to feel magnificent.

I saw boys feel strong, and powerful, like superheroes.

In a way, this experience of having a child with special needs has been our own magic carpet ride. We have been transported to a new world, a different world, that we knew so little about and that so few people are comfortable in. As we have become used to different, so we have come to find the beauty in it.

The Butterfly Centre plans are coming along nicely. The owner mentioned to me that he remembered the previous owner talking about a mural of sorts which had been covered up with wallpaper. He and his wife decided to have a look for it, peeled back the wallpaper and found this.

 

The butterflies have been there all along, patiently waiting until the time was right. And now it’s time to fly.

When I last checked a couple of days ago, our bank account balance was at R16724.00, (although this is amazing, and we haven’t even done anything yet and I’m so grateful and humbled and just finding the time to write the individual thank you letters) so we’ve still got a way to go. I have a couple more donations pledged already that must still come through.  There’s the Golf Day at Hermanus next Friday the 15th of May, all funds raised will go to the Butterfly Foundation. You can contact Bianca on 0820757477 to find out more, or if you have any prizes you would consider donating.

My sister Jacqui will be organising a fundraiser in Cape Town shortly, and my sisters-in-law are working the UK angle. Keep an eye out for further developments.

Please keep sharing the story. If you have a specific person or organisation you feel could assist, please leave your email address in the comments and I’ll email you some information to pass on.

I have no doubt that we will reach our target, and that the centre will be amazing…after all, I’m just following the signs. And they are everywhere.

Thank you, thank you, thank you from me. From our family. From Sam and everyone whose lives he has touched.

Thank you for taking this magic carpet ride with us.

 

 

Fappy times

Wow, these last weeks have felt pretty crazy.
I have been jumpier than a long tailed cat in a room full of rocking chairs. Erratic at the best of times, my head is all over the place. Mad as a bicycle.
I have been so stressed about the book, about how it would be received. And suddenly I have remembered…it doesn’t matter. It is out of my hands now, I have fulfilled my side of this, Sam. And now I relinquish control.
We had such a glorious holiday, so free of worries and the troubles of everyday life. I picked up a full five kilograms at Umngazi due to 5 meals a day, all inclusive. It would be ridiculous, downright ungrateful, not to stuff yourself. I wear my new weight with pride. I got really skinny when we lost you, Sam, but it’s been no fun at all. Being fat and happy is surely infinitely better than skinny and sad? Fat and happy….fappy.
More than five months smoke free now, and really feeling pleased with self. I am starting to feel the health benefits now, but even more important is the freedom. It’s one less thing to worry about….do I have enough cigarettes? Where can I smoke? Can we meet at this place or that…can I smoke there? The whole holiday I didn’t even carry a handbag. Just my sunnies and a kikoi and I was good to go….tra la la!
But, enough about my smug non-smokerness.
What a peculiar time the last few weeks have been. A series of not-so-gentle reminders that time is marching on. Last week, I accompanied Hubby to the big smoke (Hermanus) on a quest to purchase the final nail in our middle-aged coffins….reading glasses.
Now, as he wanders the house in his dorky slippers and I sit on the couch reading magazines and eating biscuits, it fully hits home. We are entering half time.
Sometimes it feels like I am holding on so tight, I can feel the tension as it builds up in my neck. As if I let go, my family and everything we have together will just fall apart, and float off into space. But that is my challenge now, to keep reminding myself to let go.
The boys are doing really well.
Aaah, the mystery that is Boy One. Every day he amazes us, and everyone around him. His kindness and his willingness to help, his absolute unbridled joy to see you, his pure and perfect enthusiasm for life.
And yet, as he grows older certain limitations grow clearer. He wants so much to learn, to be useful, to help others. At the parent meeting at the end of last term we were faced with the question. Are we doing the right thing for Jack, keeping him in a mainstream school, even though he does have a full time facilitator?
The teacher may have been alarmed that I burst into tears. “I don’t know what to do. You tell me what to do. Soooommmmeeeeebbbbbbooooodddddyyyyy goddam tell me what to do.” I think someone forgot to hand us the Boy One manual when we left the hospital.
He is so happy at his current school, but then, the joy of him is that he is so happy wherever he is. He is just as delighted to be sitting at the restaurant polishing glasses with staff as he would be at Disneyland. In fact, probably more so.
The school has been truly wonderful, the teachers and other pupils so supportive, loving and accepting.
But surely things must seem like such a struggle, I know that he feels frustrated that things are so much easier for everyone else. Are we trying to fit him into a mould that was never meant for him, and thereby making his journey harder?
In Hermanus there is a school, but it is more than that. It is a farming community that serves special needs children and adults. It has a school where children are taught in a completely different way, and each child receives the individualised education that these amazing spirits deserve. They actively help in farming activities, work with animals and interact in different way with nature. It has taken us this long to make an appointment, to finally set a date to go and see them. Hubby, myself and Jack.
We do not give a toss what school he goes to….our only concern is for his happiness, and that of his brother. All we want is happy children, full stop. And I realise now that the choice does not have to rest with us alone, it must rest with Jack. When we go there, I will be watching him carefully. And only when we have seen how he responds that will we know the best thing to do.
And as for Boy Two…he is beautiful. His patience and his kindness towards his brother continue to amaze me. He is brilliant and sensitive and wonderful. The sadness I see in his eyes when he speaks about Sam is devastating, but it is part of him now, as it is part of all of us. We need both the dark and the light aspects of ourselves in order to be whole.
It ain’t all perfect. There are ups and downs and sometimes I am sad or anxious or terrified. The books should be delivered to the warehouse today, and then in bookshops within 7-10 days.
Each step is revealing itself in its’ own time. I just need to remember that and to trust the flow. Thank you for the love and support.

One foot in front of the other

Dear Sam,
I had the hardest dream last night. Someone had invented a machine which could turn 2D photos into 3D, and they were busy explaining the workings of it to me. And suddenly, there you were in my arms, Sam, at about a year old. I saw you starting to smile and I had to look away, because my heart was screaming…”It’s not real!! Don’t look, don’t try to touch that soft skin, don’t look into those blue eyes. He’s not real, it’s not real.” But I couldn’t help looking back, stroking your not-real cheek, smiling back at your not-real eyes, desperate to kiss your not-real mouth. But all the time I knew that you were not really there, and that is not okay.
I woke up feeling heavy. Opening my eyes felt like tearing plasters off skin, like facing the light of day would confirm what I was feeling, YOU ARE NOT REAL. YOU ARE GONE. I went into soldier mommy mode, making lunch boxes, dressing your brothers, taking them to school. Once I had dropped them I drove to the cliffs and I walked and I cried. I cried in a way that I haven’t done in months, and that accessed a pool of sorrow deep in my soul which needed to be tapped, like an abscess that needed draining.
Afterwards I did feel lighter, although my tears have been very close to the surface all day.
On Sunday Hubby and I took the boys for a walk to Pig’s Snout, a local scenic spot where two amazing waterfalls meet. Boy 2 ran ahead with a friend we had invited along, Hubby doing his best to keep up. Boy 1 and I brought up the rear, gingerly picking our way over the uneven terrain. Or to be more accurate, me pretending I was confident Boy 1 could do it alone, while constantly making sure that I was within reach in case he stumbled and fell. His low muscle tone means he tires easily, and halfway into the walk he started to flail. He sat down on the sandy path, and said “Mommy, please carry me”.
And for once I forced myself to say no. “You can do it my boy, you don’t need me. Just focus on putting one foot in front of the other, one step at a time.” And like that we walked for nearly an hour, Boy 1 singing softly to himself….”One foot in front of theee ottthhhhheerrr, one foot in front of the ottthhhhhherrr.”
And that is what I keep thinking of today. Times may be hard, we all have periods in our lives which are not easy. The only way out is through, just keep your eye on your end goal and keep moving forward. My dream life still entails a kaftan and vegetable garden, children running around me, friends and family popping in for a glass of wine or a cup of tea. And that is what I am walking towards.
One foot in front of the other.
Good night, my boy. We love you. x

Mothers day

Mothers day.

Silver linings

Hubby is away on solo mid-life-crisis break. Riding a bicycle bedecked with fairy lights through the Karoo desert, wearing one of an array of ridiculous outfits and a wig. Yup, he has gone to AfrikaBurn. God love him, he needs it, that man, and deserves it.

A chance to fully let your hair down, just be yourself and think only of yourself. I think everyone deserves that now and then.

The boys and I have been staying first with Nanna and then last night with Grandma, so it’s all been very exciting for them. They love, love, love hanging out at the restaurant. Boy 1 loves to help, to carry cups and plates and chat to customers.

It’s interesting to see how well most people respond to him. Before I had a child with special needs I was pretty uncomfortable around these sort of differences, I can tell you. But the world is changing and evolving, people can see the absolute beauty of his face and the purity of his soul. Boy two sees it too, and is incredibly kind to his brother. He helps to show him how to do things, and he makes jokes to stop him crying when he’s having one of his meltdowns. I can see what a beautiful people they both are becoming, and I am so proud.

Everyone who works at the restaurant loves him, and he is celebrated for his uniqueness. Because we all know that he is different, not less.

I took Boy 2 to have his squint corrected a couple of weeks ago. He was so brave it was incredible. Sensible sister came to sit with me at the hospital in Cape Town because it’s not easy. It’s never easy having your child go under general anaesthetic, when you have to hold the mask over their face to put them to sleep. It’s awful. But sister cheered me up, and we laughed together at his woozy, loving antics once they had given them his pre-meds. Man, was he funny. They wheeled him into theatre while I changed into the obligatory scrubs and mask. When I approached the bed he looked a bit concerned when he recognised me. Pulling on the nurse’s arm and pointing excitedly in my direction. “She’s not a doctor, you know! That’s my mommy!” Like he thought I might try and have a go at his eye. He is hilarious.

 

The eye is a bit red, but he never complains and it’s healing really well. I never thought his squint was that severe, but now that his eyes are completely straight I can really see the difference. He loves the restaurant, with kids coming and going, fishing and playing. Every day he makes new friends, and yesterday he even got invited to a playdate with one of the guests staying in the farm cottages, so he went there and had a braai with them.

Sam, your garden is looking amazing. At Easter time we had an Easter egg hunt here on the farm, the children over 6 years running madly through the vineyards. The children under 6 were hunting in your garden, shrieking with joy as they discovered the eggs. And I know that you loved it, I felt you there so strongly.

But walking in the garden this week I saw that the Nasturtiums are being ravaged by aphids. The sight made me sad, and we don’t want to spray chemicals as it’s an organic garden. But then Hubby pointed out the hundreds of ladybirds in amongst the leaves, feasting away on an aphid buffet. I love ladybirds, and suddenly your garden has many.

Every cloud, every single cloud, really does have a silver lining. You just have to find it.

 

Forgiveness (or something like it)

This week I spent a morning with Boy 1 at the hospital, having grommets inserted into his ears. This is the third pair, so you would think I would be pretty much an expert. But I hate it. Holding that plastic mask over his mouth and nose while he struggles until he falls asleep….the doctors swear that he won’t remember any of it, but how the hell do they know for sure? It feels like such a betrayal to my boy. And then waking up from the anaesthetic is fairly traumatic, as many mothers of young kids will testify. The trashing and screaming, apparently a natural reaction.

And it makes me wonder once again…who the hell would voluntarily sign up for this hair-raising ride of parenthood? I read somewhere once that having a child is like deciding to allow your heart to walk around outside your body for the rest of your life. But afterwards, cuddling him in his little hospital gown for two hours, I remembered why. I have lost one child, and nothing will ever take away that pain. But the real point, i think, is to treasure our children every moment. Feel that cuddle, and the love behind it, with your whole heart and being.

On Tuesday I lit a candle for SAM and I asked Boy 2 if he would like to send a message. Usually he immediately stops what he is doing at the mention of SAM’s name, and usually it’s quite a sad and tearful communication to his little brother that follows. But this time, he carried on playing and said (very casually) “Not right now, thanks, I’m busy”. And in a way that was very sad, and in another way it is wonderful to see my beautiful boy start to rebuild his heart. It’s as though SAM is giving us all permission to be okay, and to carry on.

Our new house is so nearly ready, just frustrating details to go. We are making it so super special for the boys, with their built in bunk beds and race track linoleum floor. They have been through so much this year, we all have, and this move needs to be the happiest memory ever. Change is hard sometimes, but learning to accept and embrace it is an important part of growing.

26 August 2013

Now where were we? Ah yes, I was about to tell you about E.

E was my nanny, but also an important teacher in my life. She arrived, like a Godsend, when I was pregnant with SAM. She swept in and took charge. She was highly bossy and opinionated and I was fecking terrified of her. She took over my kitchen. She took over my kids. After SAM was born I was in a bad way, I can tell you. Although I managed to keep my corpse-like grin for most of the public. But I was CLEARLY suffering from severe postnatal depression. After three kids in five years and only about five minutes maternity leave, it should be a great surprise if you’re NOT fucking depressed. Every chance I got I crept into my bed and slept. Sleep was the only escape I had.

I got medication but it just wasn’t enough. I was broken inside and had never given any time to trying to heal. I plodded through the days, banging away on my PC in the office, all alone, filling out forms and crappy VAT returns all day long. Some people thrive on that sort of thing, and for them the peace and structure of office work is perfect. But I, dear friends, am not one such person.

I couldn’t write, and hadn’t put pen to paper for ages. I had too much wine too often. I loved all my boys fiercely, but it was all very hard, you understand. E saw me through that time, and I loved her. My boys loved her. She trained in ABA therapy and became Boy 1’s tutor. I relied on her completely.

When SAM had just turned one she just left. She borrowed money for a holiday back home and she got on a bus and she never came back. I was frantic. Such a good woman, with such high morals, and a very vocal woman of God, would never do such a thing. I felt sure that she was in trouble. Hurt, injured or dead. I phoned the Consulate in Zimbabwe countless times. I phoned her family. Eventually, through endless searching, I tracked her down in Cape Town. She had simply found a new job, and a boyfriend, and she had moved on. I was devastated. It really is true that going to church doesn’t make you a Christian any more than standing in a garage makes you a car.

As you can tell, I have forgiven her. Well, I’m in the process of forgiving her, which is a start. The truth is, she fulfilled a role in my life and she left when I needed her to, although I didn’t realise it then.

It was time for me to take back my home, my power and my children. Because I am the Mother. And I had started to crawl my way back to me.

Thank God she left when she did, or I may not really have had those six months with you, SAM. To get to know you properly and to know how clever and funny and loving you were. Are.

Forgiveness. Such a simple word for such a vast and complicated act. When you begin to know yourself, to spend time looking at what it is that is holding you back, you will need to forgive. Forgive those who hurt you, and accept the lessons that they offered in your life, and be grateful for them. Forgive yourself for your own wrongdoings….these too, were part of the plan.

I have said before that I believe your thoughts create your reality, and that I do not doubt. It sounds so simple though…surely we would all be living the perfect life by now if that was the case? But the trick is finding out what those thoughts are….the real ones, often hidden deep inside you, that make you feel small and insecure and unworthy and scared. Once you have uncovered them, you have to work through them, in your own way, in order to release those thoughts.

And for me a part of this process is writing, and this blog. So I know what my next topic must be, and it is not an easy one. But I will do it, SAM, I will do it for you.