Inside the lives of 4 parents with autistic children



Hello everyone,
Welcome back to my blog. For today's post, I have interviewed 4 parents of autistic children, 2 dads, and 2 moms, about their everyday lives, their relationship with their children, and their ups and downs in parenting. Please remember when reading this, that those stories do not represent what parenting autistic children is like for everyone, but truly only for those 4 individuals. I wanted to give those 4 parents a platform to hopefully help spread awareness, help people in the same situation relate and share their life, not to create more stereotypes, so keep that in mind when reading. With that little warning, please enjoy and feel free to leave a comment with your own story at the end.
Let's go!

The following texts are not written by me, but by the people they are about.

Adam
I’m Adam, I live with my partner Natalie and our 2 children Jack and Lily. Jack is 12 and was diagnosed with autism at 18 months. Lily is 8 and was diagnosed with autism and a chromosome microdeletion at 7. Natalie has since also been diagnosed with chromosome microdeletion.
We enjoy doing all the normal things a family does, eating out, going to parks, the cinema, theme parks, etc. These things pose more of a challenge than the “average” family, but we still do them. Honestly, with varying levels of success, but if my kids want to go to Lego land, we will give it a go, and make the best of it we can. Jack is completely obsessed with Pokemon, power rangers, and Minecraft. Whilst Lily is very sporty and loves art and baking.

The way things have been this year, I’m not quite sure what a normal day is anymore. Jack has recently gone back to school, whilst Lily is still at home. A weekday at the moment sees me getting up 7 to get Jack ready for school. Depending on Jack this can be really simple, or really difficult. At the moment he eats breakfast, I give him his morning medication, and he wants to go back to sleep, and doesn’t want to get ready until 5 minutes before the taxi that takes him to school arrives. It takes a lot of prompts and arguing back from Jack to get him ready in time. I always have to put his socks on for him, as for some reason he just won’t do socks. After Jack has gone I try and get some stuff done before Lily wakes up. At the moment that is usually past 10am, as night time is where the fun really begins. When Lily is up, it’s time to entertain her and try and fit in some homeschooling as well before Jack gets home. Other than her never wanting to do the school work, this is probably the easiest time of the day.
Jack usually gets home around 4pm, and this is where I have to split myself in half, as Natalie will usually be working. There are rare occasions where they will do something together, but not often. They will be in separate rooms both wanting my undivided attention. I have to try and keep them both happy, otherwise Lily gets upset, which will send Jack into a meltdown, as crying and high pitched noises are his biggest trigger. I describe it like walking a tightrope, and most days I fall off a few times. If things stay reasonably calm, nothing has got smashed, and I haven’t been hit, kicked, or bitten. Then we’ve had a good day. The summer has the big advantage of being able to get out into the garden, where they are both much happier. We don’t have an exact routine that must be adhered too, but we do have a flexible routine. We’ve looked at having a more rigid routine for bedtime, neither Jack nor Lily liked it, and we’ve generally been okay. At the moment bedtime has become rather interesting. Both Jack and Lily take medication to help them sleep, and never fall to sleep any time before 10pm, and never have.

Before the meds, we were lucky if it was before 3am. Jack also wakes often during the night, so we regularly check him. Especially as he likes to try and get outside to play in the garden. We caught him trying the front door once in the early hours, luckily he can’t manage to turn the keys. Still, the keys are now hidden at bedtime. Once Lily is asleep, she stays asleep. At the moment though that can be well past midnight, even with her medication. I think it’s because she’s not at school, as much as I try to keep her busy and wear her out during the day. It’s just not like a full day at school. When Lily finally goes to sleep then I can get into bed, and get some rest before doing all again the next day.
Having a child at home 24/7 is challenging (even more so when it was 2), but we don’t have to rush around to appointments and meetings at the moment. Which is usually the case. Until March this year, I was working full time, but I left my job as I just couldn’t do it anymore. Life has improved for the whole family since I made that decision. The relationship is father to child, the same as any other. They need some extra support, especially Jack. But I don’t see it any differently.
Jack was put forward for testing by his nursery when he was only 1. To be honest, I didn’t know anything about autism, and to be honest, was quite blasé and naive about it. Lily was a different story, at first we didn’t think she was autistic as she was nothing like Jack. To be honest it was a relief, as we were going through some horrendous battles with school, social services, and CAMHS regarding Jack. It soon became clear Lily was different too, the only problem was nobody else saw it. It took almost 2 years of battling to finally get a diagnosis for Lily when she was 7. Knowing what autism was now, and what difficulties she might face. Lily’s diagnosis worried me more, as we’d had a really difficult couple of years with Jack., which wasn't his fault at all.

I have so much fun with the kids, they both always want me to join in with what they are doing. They are both unique and have made me become a stronger and better person. The hardest part is seeing them struggle. In a meltdown, the look of distress hurts me a million times more than being hit. Seeing them struggle to do things, that other people take for granted. Like walk around a shop or go to a play area is hard. But you just have to make the best of things. Lily is currently at mainstream school but is struggling. I’m not quite sure what the future holds for her at the moment.
With Jack, we are coming to terms with the fact that he is probably always going to need us to care for him. We will give him every opportunity to be as independent as he can be, but it’s looking more and more likely that he is always going to need caring for.

Jade
We are Jade (Mum) and Evie (daughter). She was diagnosed just before she turned 3. We enjoy arts and crafts and being outside. Usually in one of the parks near us.
A normal day for us is, up at 8, breakfast and dressed. We don't have to have specific clothing choices because everything in Evies' wardrobe is her friendly, meaning we don't have anything in there that is a tactile problem. We either go to school where she has a specialist classroom or right now we home school. We know if she is going to have a bit of a day because she will indicate on her feeling chart which zones she's in. If she's having a good day great we'll move ahead as planned, if she's in the yellow, red or blue zone we have to work slightly harder to get her back to green.

This can be challenging when she is deciding to be non-verbal. After lessons or school, we then do a fun activity such as making bee houses out of cereal boxes or we go for our walk. Getting her to wear a mask currently is hard but she is getting better at knowing about germs. Bath time is a challenge because she doesn't like getting wet unless it's her choice. Screaming hitting and crying usually happen if she's not willing to shower. Bedtime is a story of her choice and then I sit with her until she's asleep because she has sleep anxiety and won't sleep if left alone.

My relationship with Evie is a positive one. I try and keep things as calm as possible to make sure she's happy. She's allowed to stim and talk as much as she likes, as we find this to be helpful. Evie likes to stim by jumping and flapping her hands. Like a happy little bouncy ball. She knows where the limits are and occasionally pushes them like any other kid. The biggest one is the huff when asked to do something. She likes to tease me by calling me mum instead of mummy. She thinks it's very funny. I try to keep it light and avoid outside anxiety such as the news or external dramas. These lead to bedtime anxiety. We work well together and it's made me a lot more patient with other people and how they see the world.

Evie got her first lot of testing when she was a year and a half old. She wasn't making any noises like an NT child and the health nurse was mildly concerned. It took a year and a half more of testing to find out that she wasn't mute or slow to speak she was actually autistic and that's why she was finding it hard to communicate and look people in the face etc. When I was finally told the diagnosis I cried. Not because I was upset, because I wasn't. I cried because I finally had an answer, and had a building block foundation on how to now fully help my child. I'd do anything to make her life easier so I signed up for BSL classes and Autistic Parent seminars to learn how to best help Evie. I'd do anything for her.
The best part of being an autistic parent is learning about their special interests alongside them. I wouldn't have ever known as much about bees as I do now without Evie. She loves them and will spend hours watching them in the park. I love watching her little face light up when she tells me about what bee this is and what's special about it. She amazes me constantly.
The hardest bit isn't what you'd think, it's not the communication issues or the behavior. It's other people's reaction when you explain your kid is autistic. The "oh I'm so sorry" the "she doesn't look autistic" or the worst pulling their child away like Evie has a disease. It makes me so angry, that people just see her as what they perceive autism to be. Not the sunny, funny feisty little girl that I have.
What changed as Evie grew was me. Before my daughter, I was impatient and uneducated. Now I have her, I've learned to communicate more effectively, be more patient with people, and look out for those small tells that someone is uncomfortable. With my friends in particular I've found that just by listening better and watching for small cues I've become what I hope is a better friend.
Another thing that has changed is the fact my family is also more supportive. They treat Evie the same way they treat my other relatives, except they give her more time and listen when she's talking. They also understand that communication is hard so she might be talking to you but she won't be looking, and that doesn't mean what she has to say isn't important. They've come a long way.

Duncan
I'm Duncan Casburn aka PDA Dad UK on YouTube. youtube.com/channel/UCbHGI My daughter's autistic and PDA (Pathological Demand Avoidance), my wife is also likely autistic but not diagnosed. Unfortunately, my local council doesn't recognize PDA which complicates things but was told that my daughter is PDA by a CAMHS worker. We try to keep a strict routine. School clothes always in the same place. We have to rewash the same clothes constantly as my daughter is very sensory and clothes present a constant issue.

PDA is particularly challenging as it means that demands create increased anxiety and often lead to violent meltdowns. We have to be careful with phrasing and try to present options - so rather than "clean up" asking "What shall we put away first?" We have a very strict bed routine. My daughter requires melatonin (many autistic kids struggle to produce melatonin naturally and it's the body's natural sleep hormone). We then go up for baths and chill time before sleep.
On weekends etc we go out a lot. We struggle with cabin fever and she needs a lot of exercise.
The relationship can be difficult. I'm of the opinion I'm a parent first...I'd love to be a friend to my daughter and we are close, but I'm also an authority. With PDA this presents a challenge as authority represents a loss of control and this can be tricky. I'm careful after meltdowns to have makeup time. We cuddle and talk through what's happened - this is especially important if I've had to physically restrain (her school has trained me in safe restraint - this has been essential as she can and will hurt other family members in meltdown and as a control).
She's in a sen school and we have a great working relationship with her school and communication has been essential as she will try to play us off against each other). We also have a lot of fun she loves tickle time and is very curious and loves to ask questions. She's very creative and we share a love of music - both very different music styles lol.
We were aware of her Autism from an early age - but also unaware. We didn't know if all kids were like her as we had no point of reference. We spent a lot of time blaming ourselves and felt very guilty. Her nursery picked up on certain traits and noted them as schemas. However, it was school that finally got the ball rolling and after repeating reception helped apply for an EHCP as they felt mainstream wasn't the right environment for her.
It was a mix of emotions. We knew there were issues but seeing it in black and white was confronting. My wife has struggled in particular as she blames herself for passing it on. She has bipolar and is likely autistic also. There is very little support without fighting for it too
The best part of being a parent to an autistic child (just a heads up - autistic people hate the term autism parent - I've been reprimanded for it before lol) is learning to take joy in the small victories and moments. Things a lot of parents take for granted can be big steps - things like reading and so on. Eating new foods. Having a meltdown free day.
It's also opened me to a whole new world - I now run a Facebook group for parents of autistic kids and we have now reached 20k members. I've learned so much and have an understanding of how life is for my daughter and my wife. The hardest part is managing behaviors and in particular, aggression. Having to physically restrain my child hurts and I often feel horrendous afterwards - I've been known to cry afterwards. Seeing her suffer for things out of her field of control - she's visibly upset but can't manage it. I also look at other families with NT kids and there's a sorrow. Wishing we could have time as husband and wife - which is impossible as others can't manage my daughter's issues.
In many ways, her difficulties now will be her strengths. She refuses to take no for an answer and is focused on what she wants. My concerns are that she'll be lonely. She finds it very hard to maintain friendships (a common pda trait) and, in spite of wanting friends, can't hold onto them.

Jolene
We’re parents of 5. My name is Jolene I’m 39 and my husband is Neal 39. We have Sharnella, she’s 21, she has a diagnosis of autism and global learning delay, she functions at 13-14 but in some areas is a lot younger.
She was diagnosed at age 15. Then there is Taylor he’s 19 he has autism and learning disability, he was 16 when diagnosed. Then there is Shantelle she has mental health issues. She is currently under a team she’s is 20.then we have JAKE he’s 14 he has severe autism and struggles with anxiety he was diagnosed age 7.and last is Ted he is 9 he has autism ADHD and hypermobility syndrome he was diagnosed aged 4. A normal day in our house is waking up at silly o clock to do breakfast this is a set routine, there is a lot of issues as none of them like loud noise so if one has a meltdown then it will have a ripple effect and they all start being annoyed at each other, they all live at home with us! Lunchtimes are very hard and tiring but I’m used to them now.
Some like the foods the others don’t and they can’t touch if the food touches world war three goes off, we have one hundred plus appointments weeks well maybe that’s an exaggeration but it very much feels like that from it to gp to cbt and ehcp meetings and more no day is ever the same. None of them like to sleep either jake won’t sleep until it’s light so some nights we as parents are still awake until the birds are singing there is only certain clothes that ted will wear and Taylor is the same too they don’t like clingy material it has to be cotton. And ted won’t wear anything but shorts and a t-shirt in the winter is a real challenge!! Some don’t like the wallpapers I choose and some can become upset or even meltdown at the perfume I wear. Jake don’t cope in a supermarket! Ted doesn’t cope in bright environments! Sharnella will wear her dressing gown until it’s ready to walk off of her Shantelle like to be by herself in a quiet room Taylor is the same!

If we going on a day out we have to prepare them days before so they know exactly what is going to happen then there isn’t anything that can be unexpected. Our relationship with each child is a different bond we love them unconditionally it’s very hard when they don’t tell you they love you back BUT they show it in other ways they all have very funny personality’s and there all there own person NO TWO CHILDREN ADULTS ARE THE SAME! WHEN YOUVE MET ONE CHILD WITH AUTISM YOU REALLY HAVE ONLY MET ONE
Up pointing index.
As parents, we knew from the start something wasn’t right and that in the beginning we kind of buried our heads as parents nobody wants to find out their child has needs but as time went on and we had one diagnosed then the signs were visible for the next and the next.

I didn’t want to believe it at first and with every diagnosis we’re offered to counsel. Having a child diagnosed with anything is very hard but you move forward because no matter what they are still your children and a diagnosis doesn’t change nothing it’s how you deal with it as a parent .the best part of being an autism parent is no two days are the same and they all make us laugh. They try hard with everything they do and we are super proud of everything’ they do and have achieved. I see a future for our children Taylor is studying mechanics and will get a qualification he will never be a fully qualified mechanic but he will always be able to know how to help and assist. Sharnella has learned basic life skills and knows a lot of cooking recipes and has worked in a cafe. Shantelle has a b tech qualification in child care and also sings with a most beautiful voice. Jake has high hopes to become a scientist he is flying through school and Ted has hopes to become a YouTuber. They were all in mainstream school and struggled since they attended special needs school they now are all doing so well and we couldn’t be prouder. Autism doesn’t define who they are a diagnosis enables people to find out more about who they are, like everyone in the world they are all unique and I wouldn’t change them for the world.

I hope you fount these stories as touching as I did and enjoyed your read.
See you next time,
love,
Caroline





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