Motherhood doesn’t always follow the script you imagined. For mothers whose children have additional needs, developmental delays or disabilities, one of the hardest things isn’t the diagnosis itself, but grieving the future you thought your child would have.

You are still doing all the ordinary things that come with having a child, but somewhere along the way you realize that you are going to have to learn how to speak up for them, ask difficult questions, challenge assumptions and, sometimes, fight for things you never expected to have to fight for.

For me, this process began with the kind of things that are difficult to put your finger on. My second child wasn’t sitting, crawling, walking, talking or engaging in the way my first was at the same age.

For you it may be simply a feeling that something isn’t quite right. You mention it and are told that children develop at different rates, which is true… You may even tell yourself the same thing because you desperately want it to be true for your child. I know I did. But there is a difference between giving a child time to develop and ignoring the situation in front of you. Learning to recognize this difference can be one of the hardest parts of early motherhood.

I know this because, as I said, my son was not meeting his developmental milestones and, by the time he was around a year old, the differences were becoming impossible for me to ignore. Yet the doctors kept brushing me off when it came to his physical development. At the same time, I could see that he had a number of medical and developmental problems, including significant physical difficulties and serious food allergies. Looking back, the thing that mattered most was not that I somehow knew what his diagnosis should be. I didn’t. To this day, we have the vague diagnosis of Global Developmental Delay. It was that I knew my child well enough to realize that something was wrong and that simply waiting for him to ‘catch up’ was not a strategy.

I have written in more detail about those early years and the journey that followed in My Son’s SEN Story, a mother’s journey through special educational needs. What that experience taught me about motherhood was that recognizing your child’s needs is only the beginning. At some point, arguably the earlier the better, you also have to learn how to advocate for them. I cannot stress enough how important support is in early development for children with special needs.

How I Learned to Advocate for My Child With Special Needs

It’s not that I thought every doctor was wrong or that I absolutely knew more than the professionals looking after him. Quite the opposite. Some of the people we encountered were extraordinary and changed his life. What I learned was that being an advocate for your child is understanding that, while a doctor or therapist may have specialist knowledge, you are the one person who has the complete picture of this particular child. One of the most empowering things I was told by my pediatrician of choice was: “Paola, the saying that moms know best exists for a reason. The years ahead of you won’t be easy, and you’ll have to learn to trust yourself.”.

The truth is that a doctor may see your child for a brief appointment. A therapist may work with them for an hour. A teacher may see them in a classroom surrounded by other children. You see the child when they wake up, when they are exhausted, when something frightens them, when they suddenly master something they couldn’t do yesterday and when they behave completely differently from the way they behaved in an appointment. You see the patterns that develop over months and years, and those observations matter.

This is also where I slightly disagree with the softer version of the idea of advocacy that we often hear. We are sometimes told that advocacy is about collaboration rather than confrontation, as though a good mother should never have to push too hard. Of course collaboration is preferable where it is possible. You don’t want to spend your child’s childhood fighting every doctor, teacher or therapist who crosses your path, and most of these people are trying to help.

Sometimes you do have to fight.

Not because you enjoy fighting, and not because every professional is wrong, but because systems are generally designed around what works for most children. That makes sense when you are designing a healthcare pathway, an educational program or a set of eligibility criteria. It is much less helpful when your child happens to be the one who doesn’t fit the model. A system can be perfectly reasonable and still fail an individual child. And for you, your child isn’t a statistic.

That was one of the biggest lessons I took from our experience. There were occasions when the support available to us just did not match what my son needed. We were told to wait for therapy, so we found private alternatives. We encountered processes that seemed to assume every child would respond in roughly the same way. We found ourselves looking for workarounds because the obvious route wasn’t working for him. 

This article is not an argument against systems. We clearly need them, and many mothers depend upon them. Doctors, therapists, schools and public services all have an important role to play. But no system, however well designed, can know your child as intimately as you do, and a system built around averages will inevitably struggle with the child who sits outside those averages.

That is where a mother’s persistence can become incredibly important. Often, the reason a mother has to keep pushing is not because she is difficult. She is the person who is carrying the complete picture of her child when everyone else has moved on to the next appointment, the next case or the next stage of the process. She is the one who remembers what happened last time, what has changed since then and what still isn’t working.

Sometimes advocacy is nothing more dramatic than asking another question. But sometimes the questions are difficult and uncomfortable. Sometimes it means going back to the doctor because the answer doesn’t make sense to you. Sometimes it means asking whether there is another assessment, another treatment or another explanation. 

Sometimes it means getting a second opinion. 

Often it means spending an evening researching something you didn’t even know existed that morning simply because you are trying to understand what is happening to your child. And sometimes it means saying, respectfully but firmly, “I don’t think this is right for my child.”

I had to do that when professionals were considering whether my son was autistic. I wasn’t dismissing autism, and I certainly wasn’t saying that an autism diagnosis was something to fear. I was trying to make sure that the label being considered actually described the child in front of me. There were behaviors that overlapped, but there were also things about him that did not fit what I was being told. I was concerned that getting the wrong diagnosis could send us down the wrong path, and I was prepared to keep questioning it. Thankfully, we also had professionals who supported that process rather than simply assuming that the first explanation was necessarily the right one.

That experience taught me something I think is important for any mother beginning this journey: you don’t need to choose between trusting professionals and trusting your own instincts. You need to learn how to use both. There will be times when a specialist knows something you don’t, just as there will be times when your knowledge of your own child reveals something that isn’t immediately obvious to your doctor.

What I Learned From Parenting a Child With Developmental Delays

There is another danger, too, of becoming so focused on diagnosis and support that you stop seeing the child. The paperwork can become enormous. There are assessments, reports, recommendations and opinions, and before long you can spend so much time trying to work out what category your child fits into that you forget to ask the more useful question: what does this particular child actually need?

One of the most frightening things about having a child with significant developmental difficulties is how quickly your mind runs ahead of you. You don’t simply worry about what is happening today. You imagine ten years from now. You picture what school might be like, whether your child will be able to communicate, whether they will be independent, whether they will have friends and whether you will still be doing everything for them as an adult.

I did that too.

At one point I could imagine a future in which my son never walked, never spoke and remained completely dependent on us. When you are exhausted and frightened, the future can feel less like a possibility and more like a sentence. But the truth is that you don’t know what the future will bring. A child who is struggling profoundly at one, two or four is not necessarily going to be the same child at eight, ten or eighteen.

That doesn’t mean every child will “catch up,” and I think we should be careful about offering false reassurance to mothers who are in the middle of something difficult. Every child is different, and in many cases disability is not something that simply needs to be overcome. What I do think we should say is that you don’t know your child’s entire future from the point at which you first become worried about them. One of the brilliant doctors we saw believed there was a root cause behind many of my son’s difficulties, and the difficulties of many of the other children he saw. He also believed that children have an extraordinary capacity to heal. I held on to that belief. It helps when your doctor believes in your child, too.

Looking Beyond a Diagnosis

Our experience with allergies taught me something similar. When your baby has a serious food allergy, your instinct is understandably to keep the food as far away from them as possible. Yet, under specialist medical supervision, our family became involved in oral immunotherapy for one allergy and a carefully controlled early-introduction program for the nuts to which my son had been sensitized. It was not easy emotionally. As a mother, deliberately giving your baby something you associate with danger takes a certain amount of trust. I have written more about nut allergies, oral immunotherapy and women’s health for Elysium, a British midlife magazine for women. But the experience became another example of advocacy being about making informed decisions rather than simply following the most obvious guidance.

Perhaps that is what advocacy really comes down to. It is about refusing to trust blindly and making sure you remain part of the decision-making process.

You can listen to the doctor and still ask another question. You can respect a teacher and still say that something isn’t working for your child. You can accept that a service has limitations and still ask what other options exist. You can work with a system while recognizing that sometimes the system needs to be pushed because your child needs something outside its standard pathway.

And you can do all of this while being frightened, exhausted and completely unsure of what you are doing.

I think that is one of the things we don’t talk about enough when we talk about maternal advocacy. Most mothers don’t become advocates because they wanted another role. They become advocates because their child needs one. You learn as you go. You make mistakes. You find the people you can trust. You discover resources you wish you had found six months earlier. You become persistent because you have no choice.

My son has a very different story now from the one I was imagining when I first realized how significant his difficulties were. He walks, talks, jokes, learns and continues to surprise me. This summer, he traveled to Bulgaria, where I am from, and began speaking Bulgarian after being immersed in the language with his grandparents. Given where we started, that still amazes me.

I don’t tell you this because I think every child follows the same trajectory. They don’t. I tell you because when you are standing at the beginning of the journey, you cannot see the whole road.

You may have to fight for your child. You may have to question things. You may have to find another route when the obvious one doesn’t work. But you don’t have to know where that road ultimately leads. You only need to keep looking at the child in front of you and asking what they need now.

That child, rather than the system, the diagnosis or somebody else’s idea of what should happen next, needs to remain at the center of the conversation.