I wish you knew how unrelenting special needs parenting can be.
To be fair, I sometimes don’t realise how much constant pressure I’m under. I’m too busy most days, trying to keep afloat, to analyse my situation in any great detail.
It’s not until that pressure is lifted for a moment, that I truly appreciate the chance to breathe. That’s when I realise all the visible and invisible things I do, worry about, plan for, organise, mitigate, stress about and manage.
That’s when I realise just how hard it can be to be a special needs parent.
So, it’s no surprise that you wouldn’t understand. I shouldn’t really blame you for not seeing past my careful facade of coping and recognising the overwhelming stress I face.
Because I’m often blind to it too.
I wish you knew how I miss our friendship.
I know I keep turning down your invitations. I know it’s not fair that you are trying to keep things going but I can’t reciprocate.
I know you think I don’t care.
But I do. I wish with all my heart that I could drop everything and hang out, like we used to. I miss laughing at the small things. I miss talking about the big things. I miss catching up just because we can.
I miss sharing the load. I miss talking about frivolous. non-special needs topics. I miss you.
However, I can’t be that same friend anymore. My family needs me and my responsibilities, focus and priorities have changed.
It’s not possible for me to drop everything and hang out anymore.
Maybe, I’ll be more responsive and dependable one day. I certainly want to keep trying. I just can’t do all that much now.
So, please don’t give up on me or our friendship.
I wish you knew how guilty I feel for my family.
Caring for a child with special needs takes a lot of time, energy, emotion and focus.
Not a day goes by that I don’t wish I could spend more quality time with my husband and my other children.
I know I spend more time with my special needs child than I do with them. I’m very conscious of the inequality of attention.
I know there is nothing I can do about it. I know none of this is my fault. I know I’m doing the best I can.
Yet, I still can’t help feeling guilty.
I wish our rare quality time wasn’t interrupted by my caring responsibilities.
I wish I could be more present when I’m with them, instead of constantly keeping a mental check of what I need to do next.
I wish I didn’t feel guilty about the prospect of leaving them with caring responsibilities in the future.
I just wish I could let go of the guilt altogether.
I wish you knew all the amazing things my child can do.
I know it’s hard to see past the obvious differences. These are the reasons they received a formal diagnosis, after all.
Their challenges, and all the things they can’t do, are often the first things you notice.
I know and I understand.
But, please, don’t dismiss all the many things they can do while silently judging them on all the things they can’t.
Take the time to watch, listen and learn from them. Appreciate the different knowledge, point of view and energy they bring.
Acknowledge just how special, unique and amazing they really are.
Give them the chance to show what they can actually do, rather than focus on the things you think they can’t.
I wish you knew I’d welcome the opportunity to talk to you about my experiences.
It can be awkward knowing what to say, when you see me in the supermarket, juggling three kids, shopping and a sensory meltdown.
You can only imagine how difficult it is for me to be living it.
I know your first instinct is to quickly look away. You might be unable to suppress that initial spark of silent judgement. It’s human nature to feel uncomfortable when faced with confronting situations.
However, a nod of understanding, an encouraging smile and some silent compassion would go a long way to helping me through the situation.
Moreover, asking if I’m okay and taking the time to listen to my response, would also be a great way to show support.
I may not always want to share my experiences with you (it’s more than likely been a tough day already!).
But, I’d rather you show interest, understanding and support than turn your back in silent judgement of my kids’ behaviour or my parenting skills.
There are so many things I wish you knew about special needs parenting. These are just the start.
This post is part of a Parenting a Child with Special Needs blog hop where myself and other special needs bloggers share our thoughts on a set theme each month. This month’s theme is “what I wish you knew.” I’d love for you to check out all the other posts linked up for this month!
26 Things Every Special Needs Mom Needs to Know | Natural Beach Living
What You Don’t Know President Trump | Every Star is Different
5 Things I Wish Teachers Knew About My Child’s Anxiety | STEAM Powered Family
What I Wish You Knew About Special Needs Parenting | My Home Truths
What I Wish You Knew About Being the Parent of a Child with RAD | The Chaos and The Clutter
What You Need To Know, Betsy Devos | This Outnumbered Mama
What I Wish You Knew About Parenting a Non-Verbal Autistic Child | Kori at Home
What I Wish You Knew: Building the Grand Canyon Size Knowledge of A Special Needs Mom | 3 Dinosaurs
50 Things SPD Parents Secretly Wish They Could Say Their Families | Lemon Lime Adventures
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Nice post. Sometimes the words just need to be said for people to get out of their own heads. I’m sure if you sent it to your friends, they’d all totally get it and understand.
It’s good to share this. Sometimes (aka 99% of the days) your energy is used up by being a carer. There sometimes isn’t much left to give.
Fantastic blog post! I take my hat off to special needs parents. Just take comfort in the fact that you’re doing an awesome job!
Thanks for writing and sharing your perspective here on the blog. I agree with Lydia, getting the words out is very empowering and sometimes the best way to help others understand. There’s no pressure on anyone with a blog post people can read and react in their own time and on their own terms. Real life conversations can be really hard to initiate in contrast about themes such as these. Hope I kind of make sense.
A very important post and I am glad you wrote it and have shared it in many spaces. I wonder what you are doing to care for your health? I know you like to get out and run. Have you anyone you get to share with in a professional capacity? My thoughts are that life with the children is going to go up a notch rather than reduce in terms of the stressors in brings. I hope you can chat to someone about your needs if you have not already done so because as you know intellectually “you cannot afford to be unwell.” Not nagging, just caring. xx Thanks again for linking up for #lifethisweek 4/52 Denyse
It must be really hard to get that balance between being positive (and sharing what special needs kids can do) and having people realise how difficult things are (or playing the victim). I have many friends without special needs kids who struggle with the balance. They find they’re either whinging so much about their kids: then feel bad as they know I wanted them but couldn’t have them; or feel bad about bragging about them too much!
Also I think we never know what anyone’s life is like until we’ve walked in their shoes…. (or whatever Atticus Finch said!). xx
Beautifully said! It’s all so hard with so much guilt. There never seems to be balance. Hugs!
I believe that true balance is impossible to find. The best we can do is run from one end of the seesaw to the other to put out fires and deal with crises. Since I accepted that truth for myself, some of the guilt has reduced, but not by all that much!!!
What a beautifully written post. Thank you for sharing your personal feelings and experience. I hope many people will read this and show a better understanding of parents of special needs children.
Thanks Cindy. I hope this goes some way to raising awareness of what we face and increase understanding, compassion and kindness x
I’m so horrible with the guilt. This is such a great post! Very well written.
The guilt is the worst. I know it’s irrational yet I can’t let it go. Glad (in a way) that I’m not the only one x
People will never understand (unless they know) how exhausting keeping a special needs kid on track is. Just when things seem to be going well, it can change, like a ticking bomb. Stressful and worrysome for the carer. You are doing a fab job sharing your experience in this way, I know I appreciate it x
Thanks Alicia – that means so much to me. I know people will never truly appreciate it unless they have first hand experience but hopefully I can give them a glimpse into the complexities of our lives and raise a little bit of understanding and acceptance in the process x
So pleased you have found a blogging group that can relate to what you are dealing with and hopefully offer virtual support.
It’s been very encouraging finding others who are experiencing similar things – it’s like having a virtual cheer squad, even though we are all so far apart physically. It’s really helped me through a tough transition process with my son x
What a profound post. Your work will never be in vain, soon you will reap what you sow.