I do my best to stay positive in this space, I really do. I love my kids, I’d do anything for them and I’m proud of who they are and all they’ve achieved. I honestly wouldn’t change them or their diagnoses for anything.
They truly are my world and I’d be lost without them.
However, I also know that true positivity only comes when you are real with yourself and with your situation. You can’t move forward with acceptance if you’re in denial or if you refuse to acknowledge the hard parts of your life. So, I feel I have to address the not-so-positive aspects of being a special needs parent sometimes, to keep things real and to allow us all to acknowledge the reality of our lives.
If you’re a special needs parent, none of this will be new to you. I’ve probably left a lot of things out, so feel free to chime in with your reality too. If you are not a special needs parent, I hope this list inspires you to be more understanding, supportive and proud of those around you, living this life. Because, believe me, it’s not easy.
The hardest part of all is to deal with all the responsibilities that come with special needs parenting. There are the tangible responsibilities (physically looking after your child, attending appointments, dealing with challenges) but there are also a whole host of intangible responsibilities (maintaining relationships, managing your mental health, educating others) that are rarely talked about or fully understood.
They all come together to make the special needs parenting life a real juggle. Most days, it’s manageble. But, some days, it can seem too overwhelming to even contemplate getting out of bed, even though you know you need to, somehow, keep going.
The Hard Parts of Special Needs Parenting
Needing to be ‘on’ 24/7
This one is hard. There is no ‘off’ switch. Your kids’ needs are real and lifelong. There is rarely a day off. Even if your kids aren’t with you, they are never far from your thoughts. You need to be prepared for anything. There may be a call from the school (I dread those calls!) There’s the night time wakings and/or struggles to get your kids (and yourself) to sleep. You need to be prepared to have discussions about your child’s needs, at any time of the day. There really is no time ‘off’ – you’ve always got to be ‘on’.
Making all the decisions
There are always so many decisions to be made and the responsibility for making them can be overwhelming. Decisions need to be made on treatment options, therapy choices, education settings and medication, just to name a few. It’s exhausting having to make important decisions, at short notice, pretty much all the time. There’s so much pressure to get the decision right, often based on limited information, in a short timeframe. The reality of this constant and unrelenting pressure can quickly wear you down.
Having to move out of your own comfort zone to advocate for your kids’ needs
Not many of us are born advocates. It’s a skill we need to develop from the moment we realise something is amiss with our child. It’s a massive leap to understand the different ways to work with specialists, therapists, schools and other relevant parties, to get the best outcome for your child. If it’s not in your nature to question authority, challenge assumptions, escalate concerns or take action (like me!), it can be a huge step up to move out of your comfort zone to be the advocate your child needs.
Explaining yourself to everyone all the time
It gets old, boring and exhausting, having to repeat the same information, over and over and over again. It’s also hard when you feel you need to explain yourself and your child to everyone around you, particularly when you’re out and about. If our kids meltdown in public or display odd behaviour, it’s hard to ignore the looks and reactions of those around us. I know I’ve found myself explaining our situation to strangers, although it’s none of their business. But, as a parent, it’s hard to ignore the constant judgement.
Managing time, appointments, therapies and schedules
The calendar can fill up very quickly with all the appointments that come with a diagnosis. Medical specialist appointments, regular therapies, after school commitments and school meetings are just some examples of these. With work commitments and household management on top of those, it’s hard to find time for ourselves, let alone time for our other kids, partners or extended family. Things get even trickier when it comes to fitting in friends. Managing commitments is almost a full time job in itself!
Not being able to live spontaneously
Spontaneity and living in the moment are not things many special needs families can do. Most outings need to be planned well in advance, with military precision. It needs to fit into the calendar. It requires preparing the kids. It relies on everyone being in a good mood and well enough to head out. As much as we’d love to be able to drop everything and come along to an impromptu lunch or a quick playdate at the park, it’s just not possible for most special needs parents.
The ever-present worry that you are not doing the right thing or you are not doing enough
Guilt is a constant companion (well, for me anyway). Special needs parents are always evaluating whether they are pursuing the right therapy and wondering whether there’s something new they should try. It doesn’t help when friends and family (trying to do the right thing) suggest the latest and greatest breakthrough as it just adds to our existing layers of guilt. There’s always the underlying worry too, that we’re just not doing enough, even with a full calendar of appointments. The guilt is ever present and very real.
Not having enough time to spend with your partner
There’s a reason separation and divorce rates are significantly higher for special needs parents. With the responsibilities that come along with parenting a child with additional needs, there isn’t enough time to cultivate the relationship. When the occasional date nights come around, they are often spent talking about the kids or catching up on much needed rest (well, mine are!). It’s hard to find the energy and the time to be the same devoted partner you were prior to becoming a special needs parent. It’s a hard reality and not one that can be easily overcome.
Disconnecting from friends
One of the big challenges facing special needs parents is the inevitable disconnection and loss of friendships. It’s not because we don’t value or want close connections – we need them more than ever when our lives get turned upside down. But, it’s hard to be the same friend we once were when we’re juggling so many responsibilities. Sometimes, we do have to cancel plans at the last minute. Sometimes, we can’t just drop everything and be there. Sometimes, it looks like we don’t care. But, that’s not true.
These are just some of the hard parts I’ve encountered as a special needs parent. I’m sure I’ve left lots out but I hope it helps others better understand the stress, strain and pressure we are under, on a daily basis.
What are the hard parts of special needs parenting for you?