Judgment, parent-shaming and preconceived opinions. Those are some of the things additional needs parents face on a daily basis; the world can be as cruel to us as it can be to our children.
When we’re not fighting against the world, we’re juggling; trying to manage a life that fits in with the needs of our child. Meaning play dates get cancelled, parties missed and a non-existent presence felt at coffee mornings.
As hard as being an additional needs parent is, the small things that friends and loved ones do help show that we and our child are loved and cared for.
Knowing that we have there for us battles away the feelings of loneliness and self-doubt and helps keep us in touch with ourselves as an individual. Showing kindness, sharing a warm smile and asking a genuine ‘how are you?’ could be the small things needed to lift our spirits.
The greatest thing you could do to help is grow your level of understanding, not just in the child’s condition but what life is like for the parent.
Ask the questions you want to ask, it can be daunting asking but I know most parents will appreciate you taking the time to ask; instead of assuming or holding false information. The parents will know best!
Stigma is something additional needs parents face a lot. We get attacked on social media for ‘not doing enough’ as well as on news articles relating to our children’s conditions due to a lack of awareness about what these conditions are truly like.
The media and television regularly portray untrue representations which leads to stigmas being formed.
By asking the questions or even doing your own research you’re helping to raise awareness and help end stigmas and untrue judgments.
Accepting that their life is different to yours can help save any arguments. If they hardly ever reply to you, barely ring and you don’t hear from them often, please don’t be offended.
Appointments, meetings, parenting, following strict routines and care plans means we forget about ourselves, let alone those we love and cherish.
I speak from the heart here; it’s not intentional, we do care and it is upsetting when we lose friends. But it’s something we can’t help.
Life is so fast-paced and days, weeks and months all melt into one. I’m guilty of this too, making plans and then forgetting or cancelling last minute.
I feel quite strongly that it won’t be because they don’t want to see you, life is unpredictable. We never know what mood our child will be on the day, if a last minute meeting will be booked or when appointments will come through.
We may seem like rubbish friends but we are always cheering you on, even if it’s on the sideline.
Ok, so we may be bad at keeping up a social life but we love engaging in adult conversations when we can.
But one thing we can be good at is masking how we feel, so don’t be afraid to push us a bit more when asking how we are. Be prepared we may explode an oceans worth of emotions on you.
So pick when to push us so you have the time and emotional ability to cope with our offload.
Anxieties can hold us back from doing things or going places — if you think we can handle it, encourage us to get out and about, even if it’s just for a 20 minute coffee.
Something happened this week which blew my mind and made me cry. A friend took the time to ask where we could go to meet that would be suitable for Jayden; knowing that someone cared and understood his needs blew my mind.
So often I wish I could go along to the meetups planned but so very often they’re unsuitable; the day/time picked could be a prime time, meaning crowds and crowds can lead to sensory overloads.
Then there’s the fear that if you do go that your child is going to face difficulties; leading to behaviour that will be judged as undesirable to some.
The looks we get, the hushed comments we hear under people’s breaths and the change in atmosphere hurts us. Truthfully it physically hurts and it kills another block off your confidence.
So by having someone take the time out to consider our child’s needs would mean a lot. Knowing you would have our back if things got a bit difficult would be even better.
5. No guilt please!
Something I’m noticing when I get talking about Jayden is I change the flow of conversation and the atmosphere turns a bit awkward; making me feel like a conversation killer and wondering if I need to find a social skills for dummies book.
Please, please, please I can’t beg enough, please don’t feel any guilt or awkwardness towards additional needs parents when we speak about our own child.
A good majority of us accept our life is different but think about it, our child is human and your child is human, there’s no difference there. Our child still has accomplishments just like your own child, they may be different to your child’s but it would be great if we could celebrate them altogether.
I know during bad times we may struggle with jealousy but don’t be scared of treating us like any other parent.
More support if you’re an additional needs parent like Charlie
Read Charlie’s last blog about 10 everyday challenges for parents of children with additional needs.
Find information about services that are available on our support page: where to find support if your child is disabled or has additional needs.