What No One Tells You About Getting the Diagnosis You've Searched For

I’m a special needs mom; I have 6-year-old twins who have an array of medical and developmental diagnoses. On a number of occasions, we’ve sat down with doctors, specialists and psychologists to receive spoken, and later written, diagnoses, and each time brings a huge array of different emotions. But over time, you realize professionals may give you a “name” for what your child is experiencing, but there’s so much they don’t tell you.

Here are a few things no one told me when my children were diagnosed:

1. This won’t just affect your child. It will affect the entire family.

Having a child with a genetic condition or a developmental disability, or who requires on-going support, can put a huge strain on everyone in the family. Parents have to walk through their own private journey to come to terms with, and hopefully eventually accept, that life is not going to be quite how they planned it. And siblings have to cope with perhaps not getting the same attention they need or facing seeing their brother or sister go through things no child should ever have to. Grandparents, uncles, aunts and extended family members don’t always know what to say or how to support, so sometimes they appear to criticize or be upset when perhaps they never intended.

It is like dropping a pebble in the ocean and seeing it ripple out way beyond where it first dropped. No one told me that at diagnosis. I wish they had. I may have been more patient with family if they had.

2. This will put a huge strain on your relationships.

Even couples who are incredibly close and resilient struggle when you add in the complication of a diagnosis. Blame, jealousy of the child’s needs, extra financial pressure and lack of sleep make it so difficult to maintain a healthy relationship on top of caring for a child with special needs. Then there’s the strain put on friendships when you can’t make as many social events or you cancel things at short notice. Social gatherings such as weddings, parties and christenings become quite a burden to a family who can’t readily get a babysitter for a child with additional needs. I wasn’t prepared for how a diagnosis would affect my marriage and my friendships. I wish someone had told me. I may have been more understanding if they had.

3. This will stretch your finances beyond recognition.

Raising children is expensive. Raising a child with any sort of diagnosis is even more expensive. Hospital visits cost not only in travel and parking costs, but often in food, treats for your brave soldier and perhaps time off work. For many families, giving up work to become a full-time carer is the only option, and that brings with it a drop in income that never seems to get replaced. Private therapies cost, and toys with the words “special needs” in front seem to double or triple in price. Extra heating to keep a sick child warm, ongoing clinic and therapy appointments, carers, equipment, specialist clothing, continence products and replacing broken communication devices all put a huge strain on the financial situation of a family. I had no idea about this when we first had a diagnosis. I wish I had known. I may have been more prepared for it if I had.

4. Everyone you speak to will now be an expert.

When I had no “name” for my children’s challenges, people were happy to listen, offer a hug and at the most, perhaps suggest a few things they thought might help. But mostly people just felt sorry for me or my children. But once we received that all important diagnosis (especially for some reason when one of the diagnoses was autism), suddenly everyone seemed to become an expert! We needed to start this therapy or that therapy! It was because we had the kids vaccinated! It was the stuff we fed them! They knew someone who had the same thing and they took this vitamin or read this book and now their child is cured. And so on. We were judged, and corrected and criticized for everything from the moment we mentioned the diagnosis. No one told me that at diagnosis. I wish they had. I might have developed a thicker skin quicker if they had.

5. A diagnosis is the start of a journey, not the completion of one.

When you’ve spent months and years fighting to get your children’s needs recognized and acknowledged; when you’ve been on waiting lists for so long you can’t even remember the person’s name who referred you in the first place; when you’ve put your heart and strength and fight into this one thing, you can easily see the diagnosis as the end of a long journey. It’s been three years since we were told my son had classic autism, global developmental delay and severe learning difficulties. Three years on and I’m still fighting in his corner, still trying to get people to listen and still pushing for more support. I naively thought everything would “fall into place” after we had a diagnosis. Sadly that never happened, and I’ve discovered it rarely does. They never told me that at diagnosis. I wish they had. I would’ve saved some of my strength and stamina if I had known.

6. There will still be days, even years later, when you’re sad.

I expected to cry the day we were given the diagnosis. What I didn’t expect is that years later, there would still be days I’d look at my child and cry. That doesn’t mean I’m not a happy person. My children fill me with pride daily. They are achieving in their own way all the time. But some days I watch them struggle. Or see something another child does easily that they have yet to master (like talking or waving goodbye), and the tears come easy. And I’ve realized I’m not alone. Some days I relive that diagnosis day and it stabs me in the chest as much as it did the first day I heard it. I don’t live there anymore, but I still hurt. And that’s OK. It’s just no one told me that on diagnosis day. I would’ve kept some tissues with me had I known.

7. Diagnosis doesn’t change your child. Love does.

I looked at my child differently the day they were diagnosed. I saw a child struggling with medical issues or developmental issues and I worried for the future. I saw a life mapped out for them I never planned nor wanted, and that broke my heart. I thought the diagnosis would somehow define them. But years later, I realize that has not happened. As time has gone on, people see my children simply for who they are, not the name given to their communication difficulties or social struggles or medical challenges. When I introduce my children, I just call them by name. That is who they are. That is who they will always be. They never told me that at diagnosis. Maybe if they had, I would’ve realized it would all be OK.

They gave a name that day for the collection of difficulties my child presented with. But that was all. A name. A word. Something I could learn more about to help them. They took my breath away for a moment. But they never, ever took my child.

My children are awesome. But they never told me that on diagnosis day either. That’s OK though. I tell them that every day anyway!

Follow this journey on Faithmummy.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, 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 Share Your Story page for more about our submission guidelines.