This article is written based on the opinions of one parent we spoke to and her experience of raising a child with global developmental delay, autism and Down syndrome . 

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Raising a child with Global Developmental Delay (GDD) comes with a lot of unexpected challenges. They don’t come with a user manual (unfortunately)! So, with that in mind, here are some of the things I have learnt so far in my journey as a parent of a child with GDD*.

1) Support early, not later

If you have concerns about your child’s development, trust your instincts. Getting support as soon as possible can make a world of difference for a child with GDD. By setting them up on the right path as early as possible, we can identify where they are struggling and support them in those areas. It’s not about labelling or restricting them but giving them the best possible start in life.

2) Every child is unique, and so is their development

It’s natural to have expectations about what growth should look like, but no two children develop in the same way. Even among children with GDD there are significant differences. For example, some may be dealing with multiple diagnoses, some may struggle in certain areas but excel in others, or some may develop in bursts and then seem to slow down. Your child is a unique person with their own strengths and weaknesses, and so is their development.

3) Progress is not linear

Some days they might surprise you by suddenly learning something new, and other times your child might feel like they are making no progress at all. It might even feel like 1 step forward and 2 steps back! But this is all normal, even for ‘typical’ children. Try to remember that growth isn’t a straight line, it’s a journey that has ups and downs.

4) Milestones are a guide, not a rule

Milestones can be helpful, but they aren’t deadlines, and your child isn’t losing anything by not hitting them in time. They don’t define worth or potential. It’s a marathon, not a race, and they will get to where they need to be in their own time.

5) Comparison can make progress harder to see

It’s natural to wonder how a child’s progression compares to their siblings, classmates, or even other children with disabilities. But these comparisons can be discouraging, especially if it feels like they’re falling behind. Rather than looking sideways, it can be more helpful to reflect on how far they have come in their personal journey. Progress isn’t always immediately obvious, but every stepping stone matters, and those little wins all add up! It’s good to remember that development isn’t a race, what matters is that they’re moving forward and growing in their own time.

6) Inaccessibility is the problem, not your child

The world isn’t always inclusive or accommodating for children with additional needs. We can’t expect them to force themselves to fit into systems that weren’t designed for them, you can’t fit a square peg in a round hole! Instead, it’s important to find ways to help your child comfortably interact with the world in their own way. That might be by using special communication tools, sensory adjustments, or finding inclusive spaces. Don’t be afraid to advocate on their behalf, to stand your ground and get your child the reasonable adjustments they are entitled to. If you’re struggling with this, seek support from our helpline, we have specialist advisors on hand to guide you.

7) Seek support from multiple sources

You don’t have to do this alone. There are thousands of other parents in the same position as you, and there are communities waiting to welcome you with open arms and an understanding ear. Charities like Mencap, local support groups, and other parents can offer valuable advice, support and reassurance. A good starting point might be to join an online community through social media, where parents share advice and discuss their experiences.

8) Take care of yourself, too

Parenting takes a lot of energy, especially when raising a child with additional needs. When you’re so focused on them, it’s all too easy to push your own needs aside. But your wellbeing matters, too. It’s important to make sure to take time to care for yourself and your own needs. And if you find yourself struggling with your own physical or mental health, remember that reaching for help isn’t a sign of failure, it’s being proactive. When you’re feeling well, you will be more prepared to be fully present for your child.

There’s no perfect way to be a parent, all we can do is the best with what we have. Raising a child with additional needs in an inaccessible world is difficult and often unfair, but you don’t have to do it alone. Seeking support is the first step, there’s a whole community of parents, professionals, and advocates ready to share your experience. Learning and growing takes time, and it’s a journey you and your child are on together. For more information visit our Global Development Delay page.


*This article was written and adapted from information provided by a parent of a child with GDD, Autism and Down’s syndrome.