Being a young mum is hard, but having a child with additional needs brings along extra challenges you have to face.
Life seems to become like a giant risk assessment and your calendar seems more filled up with appointments than days out.
But children with additional needs are such incredible individuals to be around and it’s a pleasure to be able to care and love for one.
Sometimes it can be hard for people to know what life can be like for the children with additional needs and their parents, so here are some of the most common challenges me and my son Jayden face.
1. The morning routine
I know mornings are dreaded by most, but spare a thought for the mums who battle against the mornings for a whole different reason.
Self-care can be really hard for those with additional needs so I need to be on board ready to help, be it from chasing him around to get him dressed (although he’d much rather go naked!) or hunting around the house to try find where he’s hidden his socks today.
The tooth and hair brush are evil objects that need to be hidden from view and breakfast has to follow the same pattern.
Now, strangers to Jayden are as scary as they are unpredictable. He never knows if they’ll try speaking to him, if they’ll get too close to him or if they’ll try to touch him, so when strangers are around Jayden tends to keep his safe distance. But strangers for us can be a total nightmare.
You get the ones who can’t help but be offended by your child — they act shocked when they get shouted to “shoo-way” when they’ve tried to touch him, and then some seem puzzled when I don’t want their parenting advice. I’ve met enough people who think they’re suddenly a pediatrician to last me a lifetime!
Then you have the onlookers — they stand there and gawk as your child is breaking down in front of them; they make a mum who’s ready to burst into tears feel even worse.
Staring doesn’t help me, parenting advice when I don’t need it doesn’t help me, but a simple smile can do wonders.
3. Breaks in routine
Half-terms and summer holidays are the enemy of a child who loves routine as this is the time that the routine they depend on is different to what they’re comfortable with.
Places are busier, nursery is shut and our days aren’t always planned out. This is just too much change to those who hate it and life to them becomes chaotic.
As they start to feel more confused and anxious it usually means behaviour starts to get worse and tantrums/meltdowns become more frequent.
We tend to take each day as it comes during the breaks and try to do lots of visual prompts to keep Jayden in the know.
4. Things out of my control
Things that I can’t control is another thing we face often, as life is just so unpredictable and that’s really hard when you have a child who finds predictability safe.
Hand dryers are our absolute enemy — we try to use disabled toilets as much as we can but this isn’t always an option so toilet breaks become like a military operation.
The worst experience we had is when a lady accidentally set a dryer off, which really distressed Jayden, which then made her jump in shock, meaning she set the hand dryer off again. It was chaos.
Ambulances, fire alarms even my phone ringing are enough to really upset him.
Having a child who depends on you for predictability when you can’t always give it to them is something I struggle with. Especially as Jayden struggles with understanding language so I can’t explain to him that he’s safe.
Now setbacks come in many forms for us but it’s something (unfortunately) we see very often. You could spend hours doing number games and counting songs and they finally crack some counting, then it could all be forgotten a week later.
Jayden experiences regressions with his language and we never know when these will happen or how long they last. No two days are the same for us. One night we could be celebrating because Jayden tried a new food, the night after I could be struggling to get Jayden to look at his food, let alone eat it.
It’s not just at home either — some medical appointments don’t go as well as you hope or you get your hopes up that you’ll be entitled to a service, then be told you don’t meet the criteria or the funding’s been cut.
If there was one thing I wasn’t expecting on our journey was all the waiting. We are always waiting for something and it never gets any easier.
Some appointments take months to come through then it’s another wait for the report of that appointment to get back to you.
You wait eagerly for services to call you back but it’s more than likely you have to spend a good few days trying to chase them.
The worst waiting of all is waiting for people to make a decision about your child that affects their future; it’s agonising. Funding is being cut and the demand for support and resources is increasing, meaning life can become a bit of a waiting game.
Being human — let alone being a parent — is a huge emotional roller coaster; being an additional needs mum takes you round the roller coaster track multiple times a day.
One moment you can be dancing around the room because your child has managed to put their own top on, the next you could be fighting back tears because your child has been crying for nearly 20 minutes after having their nails cut and you can’t calm them down.
You just never know what amazing highs or what challenging lows you’re going to face, and that can cause havoc with your emotions.
How do you socialise with a child who doesn’t always like socialising? The answer is you don’t do it a lot, but when you do and it goes well you appreciate it so much more.
A really hard thing is when you’re out at somewhere like the park and another child comes up to you and asks why your son doesn’t want to play or talk to them; being asked that never gets easier.
I see and hear about the mums who go on play dates together or are always at a birthday parties and I can’t help but have a tinge of sadness. We’ve tried it in the past before and our last experience left Jayden crying under a table.
I’ve become an expert on what times and day’s places are quieter so that’s when we venture off to have some fun.
9. Social media
There are times (mostly when those emotions are running wild) that I really struggle with social media and I contemplate deleting all my accounts.
It’s so hard to see my mum friends with similar aged or even younger children who are achieving things that Jayden hasn’t yet.
You get told and told time again to never compare, but it’s so hard not too when it’s right in front of you. Proud parents want to show their children off to the world — I’m guilty of it too.
It just seems those kind of posts always seem to pop up when you’re having a low day.
Not being able to chat to your child is a really difficult experience. You so wish to know what they’re thinking, how their feeling and even what they dreamed about last night.
But having a child who can’t communicate well faces you with many challenges and you sort of learn to communicate in your own kind of language and way.
I know what certain noises or movements mean and Jayden uses some of his own words to get his needs across, like saying “titap” for his tablet.
I’ve noticed when people can’t understand what Jayden is saying they always give the same kind of look, which I’ve learnt is my cue to translate for him. But there are times where even I don’t know what Jayden’s saying and that’s really tough.
I always tell him I love him — I can’t wait for the day he understands just how loved he is.
If your child has additional needs: where to find support
If looking for further advice and support I would recommend speaking to your health visitor if you still have one, your GP and your local council.
They will be able to signpost you for extra support, your GP and health visitor can start the referral processes if needed and the health visitors and your local council will be able to inform you of any groups you could attend.
Another thing I really recommend is the internet and Facebook groups. The internet can give blogs to learn from, groups for support and charities near you that can help.
There are some fantastic groups on Facebook who are full of people who have been in your shoes and can offer amazing advice. These groups accept everyone from concerned mums, to those with a diagnosis.
A great website to use is Special Needs Jungle — they post really relevant articles and the website is full of resources.
Talking to other parents is a godsend when you have concerns; just hearing that someone else knows how you feel makes so much of a difference.
Follow Charlie and Jayden’s journey at her blog, Helping JJ.
Other charities and organisations who can help
Visit our support section for more suggestions of where to get support if your child is disabled or has additional needs.