The Bittersweet Reality of Diagnosis

I like many other adoptive parents remember being told (albeit very kindly) that we would need to be prepared to accept the many and often complex unknowns that come as part of the risks with adoption.

This is a true and essential thing for us to accept in order that we can completely and unconditionally love our child and their story. However, there are times when those ‘unknowns’ can be unknown factors that are not recorded in the paperwork or issues that don’t come to light until later in our parenting experiences. How do we navigate or prepare ourselves for them if that becomes our experience?

The simple and honest answer is we cannot!

We realised that Sproglet had some challenges with learning very early in to his education adventure. What has followed from that realisation has taken us on a very long trip that has taken almost 10 years to complete.

This trip has been a very long road with lots of twists and turns. Some parts have been welcome diversions that have led us to new people, new information and resources and new hope. Others have felt like long, bumpy and unmade roads where the locals don’t welcome visitors, the sat nav gets confused and is constantly trying to reroute you elsewhere.

Earlier this year we finally received multiple diagnoses for Sproglet including FASD, ADHD, ODD and what feels like all the remaining letters of the alphabet. We are currently still awaiting confirmation of an autism diagnosis and there is every chance that we will receive that in due course.

We now find ourselves sitting in that peculiar and strange place between pre and post diagnosis. The place where you stop and reflect on how far you have come to get to this place. The place where you grieve for what this means for your child while feeling immense relief that you finally have some answers. The place where you are forced to consider your parenting again and work out how it may need to adapt to meet these new challenges. It all feels quite uncertain in this space in between.

Here are the key lessons we are learning as we sit uncomfortably in this space while we wait for further decisions and discussions regarding therapies, intervention and education needs.

  1. It is ok to feel relieved and anxious at the same time
    It is perfectly ok to feel a great sense of relief that you now have some confirmed answers to why your child struggles. For some and I know this was true for us there was a sense of vindication. For years we had told teachers and other professionals that we knew something wasn’t right and that it wasn’t just us being inexperienced or overly sensitive parents. We lost count of the many times we were told ‘perhaps look into a parenting course because he’s not like that at school.’ I can only wish that we were at the same primary school so I could tell the teachers that I was right.

    At the same time, the flip side is feeling anxious for what now lies ahead. We are chasing the outcome of an EHCP, awaiting details of any additional therapies or support that might be required. We are also needing to give further thought around the journey towards adulthood, what future employment may look like and what do we need to do now to work towards his independent future?
  2. It’s ok to know you’re a great parent and still be questioning your abilities
    One of the greatest personal experiences that happened on this interesting path was that a clinical psychologist concluded in one of their reports that we are very attuned to Sproglet’s needs and have repeatedly adjusted and adapted our parenting to meet the complex needs that he presents with. This actually moved me emotionally when I read that as it felt that this person recognised that we had gone above and beyond in our attempts to help our child and that there had been benefits to us doing that. There have been many professionals who have told us we are doing a great job which has helped along the way, but it is often too easy to brush these comments off rather than hold on tightly to the praise in the darker moments.

    And yet, at the same time it is perfectly natural for doubts to creep back in during those long dark nights. Do I really have what it takes for the next stage of the adventure? Am I making the right decisions on behalf of my child? Are there more things that I could or should try?
  3. It’s ok to feel victoriously vindicated and to still feel angry
    As I’ve already said, the vindication was really exhilarating after all the hard years chasing for answers. It really did feel that I was proven to be the best person to identify the challenges my child was experiencing and to be able to explain triggers for behaviours. It also confirmed that I was not imagining what I was describing and that others were guilty of not looking beyond the smiling, compliant child in their lesson to see the obvious struggles he was having.

    The vindication felt great but I’ve had to learn to hold it in tension with the anger that I also felt. Anger that people hadn’t taken the time to get to know my child and understand his challenges. Anger that people had tried to paint me as part of the problem because most of the challenging behaviour was seen at home. Anger that the fight to get understanding and support has taken so long and should not have to be this difficult, not just for me but for so many families just like ours.
  4. It is possible to fiercely love your child and still wish things could be different
    I love Sproglet with every fibre of my being and this is never going to change. I admire every attempt he makes to succeed, his humour, his passion for nature, his love for people, his obsession with Formula One, Lego and Fortnite and his willingness to try new things. I never appreciated what a mama bear would really look like until I had to become the person standing in the gap for my child and defending or advocating for him at every possible opportunity.

    However, as much as this love is fierce and enduring I still have moments where I feel great sadness for his future. I still wonder how being neurodiverse is likely to impact on his future opportunities. It doesn’t mean that he can’t succeed in life and I genuinely believe he will be able to do many of the things that his peers will enjoy, but it is tinged with a wish that it could have been different so he doesn’t need to fight harder than others to get a smaller level of success. I wish it could be different so he won’t have to share his personal struggles with future employers, workmates or partners quite early on before he has a chance for them to get to know his amazing character. And sometimes (even though I hate admitting it) I even wish it could be different so we didn’t have to factor all of these things in whenever we plan a holiday or activity and we could go back to enjoying a slightly more spontaneous life instead of sensory needs, anxiety triggers and the need to explain everything beforehand.

I don’t mean this to sound like we are struggling or that I am veering into depression over this. We are far from that and there are lots of great moments where it can almost be forgotten for a short while as we naturally laugh and enjoy time together.

I share all of this to explain our experience and to let you know that it is okay to experience these conflicting feelings and as I read today extend mercy to yourself for those not so pretty thoughts. ‘Mercy is not just for you to offer only to others. You must be willing to let it cover every portion of your own story – both the seen and the hidden parts.’ (From I hear his whisper for women)

For those of you still chasing a diagnosis, hang on in there. Be confident of why you are fighting and take comfort in the fact that there is no professional that knows your child better than you do. And for those of you, like us who are sitting in the uncomfortable land in between pre and post diagnosis. Allow yourself to feel all of those emotions. It does not make you a bad parent for wishing things could be different and it certainly doesn’t mean you don’t love your child for feeling that way. Take some rest while you are in this space and prepare yourself for the next fight or battle because the reality is….


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