I regularly share my experiences and tips for living as a special needs family here. But I confess that I don’t always follow my own advice or live up to my personal dream of being a patient, loving, positive & calm influence on my children.
It’s time to come clean – here are some confessions of a special needs parent.
- I yell at my kids. Yes, sometimes I do. I hate myself for it but sometimes I have mummy meltdowns of my own and I can’t stop myself.
- I have days where I have little patience for my kids or for me. Patience is not a skill that comes naturally to me and I’ve had to cultivate it over many years. Some days it just isn’t there.
- I sometimes cry with the knowledge that things will never improve. Autism can be hard to live with, even living on the milder end of the spectrum. Expectations are higher which means they are often nearly impossible to reach.
- I get upset when I hear that my kids have been left out or teased or bullied. I just want to protect them from the world. Don’t those who target my kids realise they are hurting our whole family as well?
- I worry that I don’t do enough for my kids – I know for a fact that I don’t do enough for them. I don’t always follow through on the OT or speech homework – it’s too hard when the kids don’t want to know about any of it after a long and stressful day at school.
- I’ve also given up for the moment on school homework. Again it’s a fight I don’t have the time, energy or appetite to wage with them. I feel guilty that I may be impacting on their learning but, for now, I’ve made my peace with that.
- I know I don’t spend enough quality time with them. At home we are all often doing separate activities for our own sanity – we all need our quiet time to rest & recoup. However this often means that we miss out on the opportunity to spend real time together as a family.
- I feel guilty for not having more one-on-one time for each of my kids on a regular basis. I feel bad because the needs of one usually override the needs of the others. And I don’t really know how to change this.
- It’s often too hard to make the effort to go out when we don’t need to. It can be exhausting dealing with the stress before, during and after an outing. So, regularly going out on family outings, just because we can, doesn’t work for us.
- I’m sad because I’ve lost friendships because I can’t just drop everything whenever someone wants to catch up with us.
- I feel bad that I haven’t been able to contribute to our school more than I have, especially after all they’ve done for us. I’d like to volunteer and do more but that’s not always possible with the needs of my family.
- I hate having to be a helicopter parent – always hovering at social gatherings to ward off issues or meltdown. Even now I still have to be there for my teenage son in unfamiliar environments.
- I worry that the differences in my kids will become more marked as we move towards the teenage years.
- I’m scared they will be the target of bullying and unkindness, regardless of what we do to help them or prepare them.
- I sometimes resent having to have multiple meetings with specialists. It’s time consuming going over the same story, expensive to pay for their services and depressing to know that even despite all this, there is no magic bullet to help your child.
- I’m tired of having to explain my kids’ needs to others. I’m tired of having to explain unexpected behaviours. I’m tired of having to translate the world to them and translate them to the world.
- I dread Individual Education Plan (IEP) meetings. I don’t like having to concentrate on all the deficits. I don’t like having to fight for help. I don’t like having to continually justify our position, year after year.
- I long to have time away from my kids but then spend the whole time thinking, worrying or talking about them anyway.
- I never asked to be an expert in my children’s conditions. I never anticipated learning all about albinism and autism. Sometimes I wish I could just put my head back in the sand and forget about it all.
- It saddens me to have conversations with friends, family and acquaintances about their fears for their own children. I sometimes feel powerless to help them when a diagnosis is made. Yet I still feel so much pressure to help them.
- I still grieve for our diagnoses, even after all these years.
- I’m still learning about my kids. I’m still working them out. I don’t always have the answer to help.
- I just want someone to tell me what to do. I want answers. I don’t want to traverse this maze alone. It frustrates me when no-one can tell you what’s best. I no longer want to work it out for myself.
To be honest I don’t feel like this everyday. I don’t hate being a special needs parent all the time. But there are some days where all my fears combine with a sense of isolation, the feeling of inadequacy and a general helplessness to creep into my brain and bring me to the brink of collapse.
Being a special needs parent, regardless of the diagnosis, is a tough gig. We all have our moments of doubt and our deep seated fears that rarely see the light of day. We all have those days where everything is too much.
We all sometimes ask “why us?”
We should not be ashamed of these thoughts and feelings. They are natural and we all experience them from time to time. But we do need to acknowledge them – don’t just ignore them. We need to be able to move on before they begin to fester and make life even harder for us.
Do you have any confessions as a parent – special needs or otherwise?