Brody, Me & GDD

@laura-rutherford | contributor
Laura is the mom to Brody and Sydney. Brody has an undiagnosed genetic syndrome along with global development delay, epilepsy, autism and mobility problems. She writes about their life with no diagnosis on her blog, Brody, Me & GDD. Laura is currently campaigning for supermarkets to sell bigger nappies for children with additional support needs. Her petition can be found here. She also campaigns for Changing Places toilets and wants to raise awareness of this issue through social media.

Why I Wanted the Autism Label for My Son

There’s a saying you might have heard, “If you meet one person with autism, you’ve met one person with autism.” Sometimes I wonder if only those who really know someone with autism get how little others understand this saying. Not everyone who has autism has the same characteristics or traits. Just because your friend’s child with autism doesn’t make eye contact doesn’t mean my child won’t either. Just because the man with autism you worked with has a photographic memory, it doesn’t mean my child does, too. There is a reason it’s called autism spectrum disorder, and in case it’s not obvious, the key word is “spectrum.” Everyone with autism is unique and the spectrum is huge. Primarily, my 5-year-old son, Brody, has an undiagnosed genetic disorder with a secondary diagnosis of autism spectrum disorder and epilepsy. We are members of a great charity called SWAN UK (Syndromes Without a Name) who support families like mine, who have children with no overarching diagnosis to explain all of their symptoms. And we are part of a huge genetic study, called the Deciphering Developmental Disorders (DDD) to try and find answers. I regularly hear stories that it wasn’t easy for parents to get an autism diagnosis for their child. It wasn’t straightforward for us, either. Brody’s pediatrician was reluctant to diagnose him in case his autistic traits could be part of his undiagnosed syndrome. But the truth is, we may never find out what syndrome Brody has, so I was keen to make sure he had a diagnosis of autism. Thanks to his speech and language therapist, he received it last year. I wanted a diagnosis, like so many others, because sometimes a label can help. Yes, labels may bring prejudice and ignorance, but they can also bring understanding and much needed support. Too many of us know that when you have a child with disabilities, you sometimes have to fight for help and services. Without a diagnosis, this fight is a lot tougher. A diagnosis can help you win some of those battles, even if it’s not all. And when Brody is upset because a hand dryer has gone off in a public toilet, simply saying he has autism can sometimes help to explain his behavior to those around us. For me, that helps. So, what’s our autism story? Well, it doesn’t look like the “Rain Man” type characters you often see portrayed on television. I hate the term high or low functioning. It’s uncomfortable, clinical and rude. After all, we’re talking about human beings. We’re talking about my beautiful child. Brody has a learning disability and struggles with understanding. He is nonverbal and dependent on adult care. He needs help with personal needs. He has impulse control and sensory issues. He can laugh and cry in what appear to be inappropriate ways. He has no danger awareness. And at this point we don’t know if he will be able to live independently. But regardless of these facts, Brody is not defined by his autism or any of his disabilities. He is Brody — our brilliant little boy who is much more than these things. Brody, who can look you straight in the eye and share a laugh with you, like only you and him are in on the joke. Brody, who likes to be pushed in his swing or spun around in his IKEA egg chair. Brody, who loves the car wash. Brody, who likes to use your hand to point to things in books. Brody, who could eat an impressive amount of McDonalds’ Chicken Nuggets if given the chance. Brody, who loves to be tickled. Brody, who although is up at the crack of dawn each day, loves to lean against you downstairs in the dark and snuggle (with his iPad of course) so you can get over the tiredness a little easier. Brody, who has a smile that will light up the darkest of rooms and who has the best sense of humor. I’m glad our son has an autism diagnosis — and I’m pleased that this diagnosis can hopefully help to ensure we can get him the right support he needs as he grows older. But admittedly, I hope people don’t hear the word autism and just see a label. I hope they see Brody — just like we see him. For all of the wonderful things he is. We want to hear your story. Become a Mighty contributor here . Thinkstock image by nambitomo

Community Voices

The Super Sibling

What could I tell you about young carers?

I could tell you they don’t have it particularly easy and that the journey has its ups and downs.

I could tell you of the times that Sydney gets upset when people talk to her smiley big brother in his wheelchair but don’t say hello to her.

I could tell you that she has the patience of a saint but sometimes her brother not understanding or hurting her can cause her great upset.

I could tell you of the times she has cried out of worry at Brody’s hospital appointments and how heartbreaking it is as a parent to know that she shares some of your worries, when you want to protect her from them.

I could tell you of her disappointment when we have to cut days out short because it’s just not working or when we can’t do certain things as a family.

I could tell you the absolute truth in that just a few weeks ago, at 4 years old, she told me that she wished she was disabled like Brody so I would have to help her too.

Ouch.

It’s just not easy for her or any super siblings.

Some days are just hard.

And the parental guilt can be all-consuming.

But I could also tell you that despite all the hard stuff, there is a lot of good. Moreso, even.

I could tell you how proud I am of her and that she is an amazing big little sister.

I could tell you that she is wise beyond her 4 years.

I could tell you that she has a connection with her brother like no other child or adult.

I could tell you of how big a help she is. That she’ll sometimes jump ahead of me on the stairs in the morning to get his changing mat and nappies. That she sings to him or blows raspberries to try and make him smile when he’s upset.

I could tell you that she’s his biggest cheerleader and is the first to tell me when she thinks he is doing something ‘new’.

I could tell you how proud she is to show him off when, on the rare occasion, I have to bring him with us to drop her off or pick her up at nursery.

I could tell you that tonight she told me as we were getting out of the car and Brody was babbling “I know what he’s saying mummy. I understand him.”

Ending with, in true Sydney style, “I’m not even kidding.”

And you know, to some extent I don’t she is.

At 4 years old we’re not far into her journey, but I can tell it’s going to be quite the experience for us all and, if we get it right, which I hope we will, she will come out of it just as awesome an adult as she is a kid. With great compassion and understanding for others. Something so many lack.

Super siblings. I hope you know how special you are. How much we love you. And just how lucky we are to have you by our side.

What It's Like When Your Child Has Epilepsy

When your child has epilepsy, it’s a constant weight on your mind. Without fail, the moment that weight eases off, a seizure will happen – just to make sure you know it’s still there. It’s thoughtful like that. My son Brody had his first (six) seizures (that we know of) when he was 21 months old. It’s a hard time to forget — the week consisted of a house move, miscarriage, endometritis and the death of a close family member (thumbs up to the universe for that one). Until seizures entered our world, I knew little about them or just how many types there are. In fact, the first time Brody had a seizure we didn’t even realize. It started off with his arm twitching and his head tilting slightly to the side, and to be honest, we thought maybe he had a trapped nerve for a minute or two. It got progressively worse as the day went on though. After that godawful day and a few nights in hospital, we underwent an EEG and MRI. Both came back normal and that was that. I spent at least six months thinking I’d never be able to sleep again, and then I began to think it was all a one off. I was wrong of course. I naively relaxed. I was asleep one night heavily pregnant with Brody beside me. He started laughing hysterically. I turned over, and he started convulsing. There followed a year of seizures, a diagnosis (for once), a few ambulance rides and overnighters, sodium valproate, emergency meds and a care plan. Hello, epilepsy. Epilepsy makes me hold my breath until the seizure stops – the fear that he won’tcome out of it. Adrenaline at full pelt. Nervous shakes. Tears at standby for when it’s all over. Epilepsy makes me stumble for my phone to try and record seizure activity for our neurologist, while hating myself for videoing something so awful. Epilepsy makes me count the minutes, hoping it will all stop before we have toadminister emergency meds and call an ambulance. Epilepsy keeps me up at night, watching our son on his monitor every time hekicks his legs or laughs. Epilepsy makes me question memories. Was that laughter in his sleep as a baby a gelastic seizure? Did he have absence seizures and we didn’t notice? Is epilepsy the reason he has learning difficulties? Epilepsy affects our son’s already severely delayed development. It can take him weeks to get back to “normal” after seizures. Epilepsy makes me fear temperatures and febrile seizures. Eyes rolling, lips blue, shallow breath. The feeling like your child is literally dying in front of you and there is nothing you can do to stop it. They are quite frankly petrifying. Epilepsy makes me panic every time Brody randomly laughs – especially at night. Epilepsy makes me irrational. I have cried anxious tears when our baby daughterhas made any kind of strange movement, worrying that she could have it too. Even though I know epilepsy is common in undiagnosed children like Brody with global development delay. Epilepsy has no boundaries. And the truth is, compared to many people whose children have multiple seizuresdaily and go in to status epilepticus, we have it “easy.” Some people have it so much tougher. As I write, we have been seizure-free for five months. The longest time since January 2015. We are awaiting the results of a joyous (sense my sarcasm) video telemetry EEG, which will no doubt tell us nothing as our epileptic son –otherwise undiagnosed – is good at cheating tests. Despite having cognitive delaysand mobility problems. I feel myself starting to relax again… and that worries me. The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Special Needs Parenting and Sleep-Deprivation

According to the Mental Health Foundation, “Sleep is as important to our health as eating, drinking and breathing.“ Well, that’s just great, isn’t it? Because for some parents of children with disabilities, sleep deprivation can come with the territory. For some, their kids will not sleep, preferring to join the “wide awake club” in the middle of the night or wake up at the crack of dawn. No, you can’t just leave them in their bedrooms to self settle or play. Maybe they “should” be tired, but they’re not. Laura’s son, Brody. Others have children who may require medical care throughout the night, and when they aren’t up providing it, they may be lying in bed thinking about it or the next alarm call. Then there are some parents who just can’t switch off at night and have too much on their minds, making it impossible to fall asleep, let alone get a good night’s sleep. It seems to me that some parents will be affected by not just one but all of the above. Add everyday life to the mix, which, of course, can have a lot of add-ons as a special needs parent, and sometimes, well, you just need to hide in the bathroom. It’s not easy. For me? Well, I know it could be a lot worse, and I’m grateful. However, it’s not quite ideal. Our son, Brody, tends to wake up in the middle of the night and come into our bed and then wake up again at 5 o’something. I say our bed, but to prevent further disruption to our son and baby daughter’s sleep, I currently sleep in our daughter’s room on a camp bed, and Brody frequently sleeps with Super Daddy. Yes, I’m aware this is far from “normal,” however, it’s our normal and, at the moment, it works for us. Doing what works for you is so important. Unfortunately, it’s not so simple to stop the worries that can keep me up at night: seizures, schooling, Brody’s future, the what ifs, should haves, could haves and would haves. Sometimes I lie in bed, and my brain just won’t shut up. I’m far from qualified to give out advice about sleep, and, to be frank, I’d feel like a fraud trying to. I’m probably sleep-deprived, too, but compared to others, I know I’m fortunate. However, I also know lack of sleep is downright draining, and boy, do I empathize. Tired of being tired. Tired of pretending to be strong. Not remembering what it’s like not to feel tired. Unfortunately, there isn’t a magic cure for many of us. The “wide awake club” has no age limit, medical care during the night doesn’t just disappear and, well, sometimes neither does the worry. It seems like no amount of sleep could cure the tiredness we feel at times. So, from one tired parent to another, all I can offer is this: Be kind to yourself. Don’t beat yourself up if you have PJ days, look to YouTube to entertain your child or reach for the snack cupboard, which on some days can give you brief respite. Guilt is something that comes with the territory when you’re a parent. Try and give yourself a break any way you can so you can get some rest. Even if it’s not as much as you really need. Keep your head up, Mama, and your heart strong. I believe love conquers all things — it really can — including that tiredness. Follow this journey on Brody, Me & GDD. The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Feeling Overwhelmed and Parenting an Undiagnosed Child

Before I became Brody’s mom, I had barely stepped foot inside a hospital. I rarely saw doctors. I had no experience of physiotherapy. I didn’t even know what an occupational therapist was. I couldn’t unfold a buggy, let alone a wheelchair. And the smell of hospital soap on my hands didn’t make me feel anxious, holding memories I’d rather forget. Brody is 6 years old and has a syndrome without a name – a genetic condition so rare that doctors are unable to tell us what it is, despite numerous tests over the years, including chromosomal microarray testing, MRIs and EEGs to the Deciphering Developmental Disorders (DDD) study, the GACE study and the 100,000 Genomes Project (SGP here in Scotland). So far we have no answers except secondary diagnoses of epilepsy, autism and hypermobility. No diagnosis means living in a land of limbo and no prognosis. We don’t know what the future will look like for Brody. A few years ago, Brody being undiagnosed meant weekly appointments and therapies, but these days we are grateful to average around two a month. While this is without a doubt a blessing, I know as he gets older and as each health professional discharges him (despite no improvement in his disabilities), we are getting further away from ever finding out any answers. I love Brody with all my heart, but my worries for him are endless, and at times, it can be quite overwhelming being the parent of an undiagnosed child. All I can do is imagine how Brody must feel. Imagine being 6 years old and unable to talk. Unable to let those around you know how you feel and what you want. Relying on others to guess when you’re hungry, tired, feeling unwell or what you want for birthdays and Christmases. Imagine being 6 years old and taken to see numerous health professionals, but not understanding why or what they’re doing. Being expected to tolerate needles in your arms, things stuck to your head or someone taking a mold of your foot. Imagine being 6 years old and being frustrated that your limbs tire easily and are unable to do the same things as those around you. Imagine being 6 years old and not having access to a restroom because there is no table to change you and having to use the car boot (trunk) instead. Imagine all of the above and then some. Then imagine a 6-year-old boy who more often than not has a smile on his face. A 6-year-old boy who loves to laugh. A 6-year old boy who has always taken what life has thrown at him in his stride. A 6-year-old boy with the superpowers of strength, resilience and the ability to put a smile on almost everybody’s face. That’s Brody – a true superhero. My superhero and beautiful boy. SWAN UK is the only charity in the UK that offers dedicated support to families with undiagnosed children. Visit the site to find out more or make a donation.

Feeling Overwhelmed and Parenting an Undiagnosed Child

Before I became Brody’s mom, I had barely stepped foot inside a hospital. I rarely saw doctors. I had no experience of physiotherapy. I didn’t even know what an occupational therapist was. I couldn’t unfold a buggy, let alone a wheelchair. And the smell of hospital soap on my hands didn’t make me feel anxious, holding memories I’d rather forget. Brody is 6 years old and has a syndrome without a name – a genetic condition so rare that doctors are unable to tell us what it is, despite numerous tests over the years, including chromosomal microarray testing, MRIs and EEGs to the Deciphering Developmental Disorders (DDD) study, the GACE study and the 100,000 Genomes Project (SGP here in Scotland). So far we have no answers except secondary diagnoses of epilepsy, autism and hypermobility. No diagnosis means living in a land of limbo and no prognosis. We don’t know what the future will look like for Brody. A few years ago, Brody being undiagnosed meant weekly appointments and therapies, but these days we are grateful to average around two a month. While this is without a doubt a blessing, I know as he gets older and as each health professional discharges him (despite no improvement in his disabilities), we are getting further away from ever finding out any answers. I love Brody with all my heart, but my worries for him are endless, and at times, it can be quite overwhelming being the parent of an undiagnosed child. All I can do is imagine how Brody must feel. Imagine being 6 years old and unable to talk. Unable to let those around you know how you feel and what you want. Relying on others to guess when you’re hungry, tired, feeling unwell or what you want for birthdays and Christmases. Imagine being 6 years old and taken to see numerous health professionals, but not understanding why or what they’re doing. Being expected to tolerate needles in your arms, things stuck to your head or someone taking a mold of your foot. Imagine being 6 years old and being frustrated that your limbs tire easily and are unable to do the same things as those around you. Imagine being 6 years old and not having access to a restroom because there is no table to change you and having to use the car boot (trunk) instead. Imagine all of the above and then some. Then imagine a 6-year-old boy who more often than not has a smile on his face. A 6-year-old boy who loves to laugh. A 6-year old boy who has always taken what life has thrown at him in his stride. A 6-year-old boy with the superpowers of strength, resilience and the ability to put a smile on almost everybody’s face. That’s Brody – a true superhero. My superhero and beautiful boy. SWAN UK is the only charity in the UK that offers dedicated support to families with undiagnosed children. Visit the site to find out more or make a donation.

Feeling Overwhelmed and Parenting an Undiagnosed Child

Before I became Brody’s mom, I had barely stepped foot inside a hospital. I rarely saw doctors. I had no experience of physiotherapy. I didn’t even know what an occupational therapist was. I couldn’t unfold a buggy, let alone a wheelchair. And the smell of hospital soap on my hands didn’t make me feel anxious, holding memories I’d rather forget. Brody is 6 years old and has a syndrome without a name – a genetic condition so rare that doctors are unable to tell us what it is, despite numerous tests over the years, including chromosomal microarray testing, MRIs and EEGs to the Deciphering Developmental Disorders (DDD) study, the GACE study and the 100,000 Genomes Project (SGP here in Scotland). So far we have no answers except secondary diagnoses of epilepsy, autism and hypermobility. No diagnosis means living in a land of limbo and no prognosis. We don’t know what the future will look like for Brody. A few years ago, Brody being undiagnosed meant weekly appointments and therapies, but these days we are grateful to average around two a month. While this is without a doubt a blessing, I know as he gets older and as each health professional discharges him (despite no improvement in his disabilities), we are getting further away from ever finding out any answers. I love Brody with all my heart, but my worries for him are endless, and at times, it can be quite overwhelming being the parent of an undiagnosed child. All I can do is imagine how Brody must feel. Imagine being 6 years old and unable to talk. Unable to let those around you know how you feel and what you want. Relying on others to guess when you’re hungry, tired, feeling unwell or what you want for birthdays and Christmases. Imagine being 6 years old and taken to see numerous health professionals, but not understanding why or what they’re doing. Being expected to tolerate needles in your arms, things stuck to your head or someone taking a mold of your foot. Imagine being 6 years old and being frustrated that your limbs tire easily and are unable to do the same things as those around you. Imagine being 6 years old and not having access to a restroom because there is no table to change you and having to use the car boot (trunk) instead. Imagine all of the above and then some. Then imagine a 6-year-old boy who more often than not has a smile on his face. A 6-year-old boy who loves to laugh. A 6-year old boy who has always taken what life has thrown at him in his stride. A 6-year-old boy with the superpowers of strength, resilience and the ability to put a smile on almost everybody’s face. That’s Brody – a true superhero. My superhero and beautiful boy. SWAN UK is the only charity in the UK that offers dedicated support to families with undiagnosed children. Visit the site to find out more or make a donation.

Feeling Overwhelmed and Parenting an Undiagnosed Child

Before I became Brody’s mom, I had barely stepped foot inside a hospital. I rarely saw doctors. I had no experience of physiotherapy. I didn’t even know what an occupational therapist was. I couldn’t unfold a buggy, let alone a wheelchair. And the smell of hospital soap on my hands didn’t make me feel anxious, holding memories I’d rather forget. Brody is 6 years old and has a syndrome without a name – a genetic condition so rare that doctors are unable to tell us what it is, despite numerous tests over the years, including chromosomal microarray testing, MRIs and EEGs to the Deciphering Developmental Disorders (DDD) study, the GACE study and the 100,000 Genomes Project (SGP here in Scotland). So far we have no answers except secondary diagnoses of epilepsy, autism and hypermobility. No diagnosis means living in a land of limbo and no prognosis. We don’t know what the future will look like for Brody. A few years ago, Brody being undiagnosed meant weekly appointments and therapies, but these days we are grateful to average around two a month. While this is without a doubt a blessing, I know as he gets older and as each health professional discharges him (despite no improvement in his disabilities), we are getting further away from ever finding out any answers. I love Brody with all my heart, but my worries for him are endless, and at times, it can be quite overwhelming being the parent of an undiagnosed child. All I can do is imagine how Brody must feel. Imagine being 6 years old and unable to talk. Unable to let those around you know how you feel and what you want. Relying on others to guess when you’re hungry, tired, feeling unwell or what you want for birthdays and Christmases. Imagine being 6 years old and taken to see numerous health professionals, but not understanding why or what they’re doing. Being expected to tolerate needles in your arms, things stuck to your head or someone taking a mold of your foot. Imagine being 6 years old and being frustrated that your limbs tire easily and are unable to do the same things as those around you. Imagine being 6 years old and not having access to a restroom because there is no table to change you and having to use the car boot (trunk) instead. Imagine all of the above and then some. Then imagine a 6-year-old boy who more often than not has a smile on his face. A 6-year-old boy who loves to laugh. A 6-year old boy who has always taken what life has thrown at him in his stride. A 6-year-old boy with the superpowers of strength, resilience and the ability to put a smile on almost everybody’s face. That’s Brody – a true superhero. My superhero and beautiful boy. SWAN UK is the only charity in the UK that offers dedicated support to families with undiagnosed children. Visit the site to find out more or make a donation.

Feeling Overwhelmed and Parenting an Undiagnosed Child

Before I became Brody’s mom, I had barely stepped foot inside a hospital. I rarely saw doctors. I had no experience of physiotherapy. I didn’t even know what an occupational therapist was. I couldn’t unfold a buggy, let alone a wheelchair. And the smell of hospital soap on my hands didn’t make me feel anxious, holding memories I’d rather forget. Brody is 6 years old and has a syndrome without a name – a genetic condition so rare that doctors are unable to tell us what it is, despite numerous tests over the years, including chromosomal microarray testing, MRIs and EEGs to the Deciphering Developmental Disorders (DDD) study, the GACE study and the 100,000 Genomes Project (SGP here in Scotland). So far we have no answers except secondary diagnoses of epilepsy, autism and hypermobility. No diagnosis means living in a land of limbo and no prognosis. We don’t know what the future will look like for Brody. A few years ago, Brody being undiagnosed meant weekly appointments and therapies, but these days we are grateful to average around two a month. While this is without a doubt a blessing, I know as he gets older and as each health professional discharges him (despite no improvement in his disabilities), we are getting further away from ever finding out any answers. I love Brody with all my heart, but my worries for him are endless, and at times, it can be quite overwhelming being the parent of an undiagnosed child. All I can do is imagine how Brody must feel. Imagine being 6 years old and unable to talk. Unable to let those around you know how you feel and what you want. Relying on others to guess when you’re hungry, tired, feeling unwell or what you want for birthdays and Christmases. Imagine being 6 years old and taken to see numerous health professionals, but not understanding why or what they’re doing. Being expected to tolerate needles in your arms, things stuck to your head or someone taking a mold of your foot. Imagine being 6 years old and being frustrated that your limbs tire easily and are unable to do the same things as those around you. Imagine being 6 years old and not having access to a restroom because there is no table to change you and having to use the car boot (trunk) instead. Imagine all of the above and then some. Then imagine a 6-year-old boy who more often than not has a smile on his face. A 6-year-old boy who loves to laugh. A 6-year old boy who has always taken what life has thrown at him in his stride. A 6-year-old boy with the superpowers of strength, resilience and the ability to put a smile on almost everybody’s face. That’s Brody – a true superhero. My superhero and beautiful boy. SWAN UK is the only charity in the UK that offers dedicated support to families with undiagnosed children. Visit the site to find out more or make a donation.

Shopping With Young Children When One of Them Has a Disability

Somewhere along the line in my parenting journey I lost a lot of confidence and gained a shit load of anxiety. Despite being a beautiful soul, Brody can be unpredictable. Because of this, there have been many heart-in-mouth moments for me over the past six years. Thanks to the trusty helicopter parenting technique, he has thankfully had a lot more near misses than accidents. But I’m only human and sometimes I’ve take my eye off of the ball for a second or I’m not quick enough. And in that second, anything could happen. The thought of exactly that — what could happen in that second — is all-consuming. I hate to admit it, but I feel anxious taking Brody out on my own. My fear, coupled with my annoying, need-to-get-over-it, ability to get upset, angry, uncomfortable or sad at strangers with their looks and occasional comments — is not a good combo. When Sydney came along three years ago, I knew I would struggle to do things on my own with them both. Partly because of my anxiety, and partly because I knew that I would be unable to keep them both safe, which of course is paramount. So when flying solo, I became a bit of a stuck at home mum. I could handle this, but it admittedly stung if people would question my reasoning for not doing things on my own with them both. We live in a house comparable to Fort Knox, where I can actually sit down and breath. My kids are both safe. There’s literally no place like home. One of my favorite cushions. My going out motto is, “Power in numbers.” If someone else is there, everything just feels doable. The wheelchair and the buggy. The Brody meltdowns and the Sydney toddler tantrums. The unpredictable behavior. The ability of one and the inability of another. The stares and the judgement (admittedly sometimes all in my head). My overthinking, overanalysing brain. I can read this back and think that I sound like a ridiculous, shit mum. And I can read it back and think that I sound perfectly reasonable, my feelings justified. I’m not sure which is true. But I know I’m limited on the number of those who will get what I’m on about. It has chipped away at me. Whether I’m just not very good at being their mum as I want to be. Why sometimes others appear to manage and I don’t (maybe they don’t either). But recently, I took a leap of faith, it paid off and I felt amazing. A few weeks into the Scottish summer holidays, I decided to let go of my fears and take a trip to the supermarket (trust me, I’m aware of how ridiculous this sounds). I didn’t risk walking into the store with them both and the specialist trolley not being available (good job, it wasn’t) and I put Brody into his wheelchair and had Sydney walk. She complied. He complied. And we even found baskets with long handles and wheels at the entrance that could be pulled along. Ha, a sign! We came, we bought and we conquered. All of a sudden I feel like maybe this will get easier. All of a sudden I feel like I will get my confidence back. All of a sudden I feel like I will stop doubting myself, others, our situation — and every now again, I will take that leap of faith and it will be OK. “You don’t have to see the whole staircase, just take the first step” — Martin Luther King Jr.