While I am still technically fairly new to the secret world of being a special needs mum, I have learnt a lot in a few short years. In particular I remember the first year after the diagnosis feeling confused, heartbroken, stressed, overwhelmed, challenged and felt the constant urge to do more. I was always thinking ahead and predicting what things would be like, with the same questions constantly replaying in my head. Questions that I so badly wanted to know the answers to. Questions I can now answer.
1. Will it get easier?
There really isn’t a straight yes or no answer to this for us. In the beginning stages of our journey I had the optimistic view that as my daughter got older she would reach her milestones eventually. We were always doing therapy; I figured that once she got stronger and mastered more things surely it would begin to get easier, right? Well, I have learnt that it doesn’t exactly work like that and it’s more of a 1 step forward 3 steps back sort of journey.Over the years we have had a heap of regressions, setbacks, new diagnoses and challenges so it hasn’t magically gotten easier. But (and this is a big BUT!) I think your view of what ‘easier’ actually is changes. As the years go on, things that once seemed hard don’t seem that way anymore. So I guess in this way it does get a little easier as you perceive your special needs journey a lot differently.
2. Will I ever really accept the diagnosis?
I remember in the very early days I would see special needs families on social media and they just seemed so together, like it wasn’t even that big of a deal that their child had additional needs. This made me feel guilty; guilty about why I was having such a hard time accepting things. I also couldn’t help but wonder if they were just portraying this view of happiness online and if things were different in real life. Well, I definitely know the answer to this one, because I truly feel like I have accepted our journey. I get it now; I understand that it’s just a diagnosis. Yes, it makes life more challenging. Yes, your heart breaks that your child has to struggle. Yes, you wish things were easier. But it’s just a diagnosis; it doesn’t change your child, they are exactly who they are meant to be.
Recently, we just got a new diagnosis on top of everything. A couple of people have asked me how I feel about it and I am 100% honest when I say ‘fine’. It doesn’t change Willow and it doesn’t define her. All I see from the new diagnosis is opportunity. Opportunity to seek the assistance we need, and it has also given me the ability to understand her better, to gain a bit more insight into her world. Acceptance takes time, it can’t be rushed; be patient and gentle with yourself!
3. Will I stop comparing?
This happened right from the beginning. I had to stop going to our mothers’ group as it was just so hard seeing what other babies were doing at the same age. As much as you try not to compare, it’s inevitable. Seeing children around the same age or observing other families and noticing the differences was something that happened naturally. I tried not to do it as it only made me feel sad and i was always focusing on the what ifs. But over time this does ease.
When I go to a park now I no longer notice the other kids and what they are doing, or feel a bit jealous that the other mums sit and have a chat while their children run off and play independently. It has taken some time but it’s just developed naturally. Our life is our normal and it’s special to me; there is no need for comparison anymore.
4. Will I be strong enough?
Simple answer, yes! Although it may not feel like it in the beginning. You may have more bad stages than good, more breakdowns then you can handle and times when the whole special needs parenting gig just seems too hard to handle. But you will be strong enough. As a matter of fact you already are. Strong doesn’t mean that you never have your bad days; it doesn’t mean that you never feel defeated, that sometimes you just feel so overwhelmed you just don’t know how to cope. Strong is showing up, it’s recognising when you need a break, it’s knowing when you need to vent. Before you know it you will look back on how far you have come and you will realise that you cope better with the hard days and you are a different version of your former self; a stronger version.
5. Will it always feel so isolating?
I think the first year felt the most isolating for me, for the above reasons but purely because your life is different to what it looked like before. It’s different to your family and friends and you feel like you have no one to relate to.
The issues that you once faced before your child came along seem so insignificant and the new issues you have are different to those around you. It may feel like no one gets it and that’s probably because they simply don’t; how can they?
Over the years I have started an Instagram account on my daughters journey, have followed Facebook groups which relate to her diagnosis and have met friends through my daughter’s therapy appointments. This new community means that I no longer feel alone or isolated; it has given me friendship, advice and encouragement. This has taken the pressure off feeling like my immediate circle of family and friends don’t get it. They do (get it) in their own way, they are there for me the best way they know how which is more than enough.
So no, it won’t always feel isolating; you build a community along with your existing one and before you know it you have an army of support and love around you.
I am sure new questions will arise as this journey continues. But that is ok, no one is meant to have all the answers. We learn as we go!