So this is the challenge and my dilemma. On the one hand, my son (who is 29 years old) is a total joy, makes me laugh, and can be great company. But on the other hand, he drives me crazy. He doesn’t see anything through. He has no sense of consequences for his actions. He is disorganized and is always chasing his tail. When he was at school, I was the parent dreading weekends and holidays. I felt lonely and isolated from the other parents, as they all seemed to have perfect children. And now, my heart breaks to think of what the future may hold for him.
Of course, it’s not all doom and gloom. He has many special talents, and he has qualities that I love. But life, to say the least, is quite a challenge. So his bedroom looks like a bombsite (remember, he’s 29, not a teenager). So he loses things. Forgets things. Breaks things. Makes inappropriate comments. What can I do…?
I do actually find him really amusing. And if I didn’t find the positive, funny side of things he does, I think I would spend my days crying a river. I can help, advise, organize and attempt to keep him on the right track. I have tried to be a good role model, to be positive, and to see things from his perspective. I have bailed him out but also refused to take the blame or be accountable for his mistakes. I have gotten angry but also been sympathetic to his crazy choices. I have ignored his rudeness but also understood his difficulties. I have been a social worker, banker, cleaner, hotelier, UN peacemaker, chauffeur, and just plain old mum. I think I’ve done OK. It’s bloody hard being a mum of a child with special needs. Yes—I see my son as unique, gorgeous, funny, a wild spirit, and absolutely great company.
There is a but.
We have to go through our daily lives with struggles and battles. No wonder we’re frazzled! But there are things that can help. If the people in our lives can get a glimpse into how we are feeling, then maybe our lives could be a little easier.
So, here is my guide to seven things you should know about Special Needs Mums (SNM):
Juggling doesn’t even come close. Not only do we SNM need to worry about our children, but we also need to tend to the house, siblings, our partner, our job, etc. No doubt we are also involved in a charity group, as SNM tend to be the ones who feel the need to “give back.” Of course, looking after our children is exhausting, both mentally and physically. We are in constant fight mode, ready to take on the challenges of school, doctors, consultants, etc. We are constantly on edge.
In a room full of people, SNM can still feel isolated. Our children don’t fit in, so we feel we don’t fit in. How can we join in with conversations about universities, weddings, and successful jobs when our children are struggling with simple social communication? So we just smile, nod, and agree, always feeling on the periphery of the norm.
SNM are grieving for the children we should have had. Our hope, dreams, and aspirations burst the moment we knew things were just not quite right. Our picture of family life certainly did not look like this. The light bulb moment that our beautiful children would not have the lives we hoped for is painful and can be overwhelming.
4. Brave face
To the world, it can seem as if we’re coping. On the whole, we are. But more often than not, we have to wear a mask to hide our frustrations and exhaustion. No one wants to hear our moans when we’re asked ‘How are you?’ So instead, we smile and say ‘fine’ when things are actually far from fine. Inside, we are in turmoil.
A completely understandable emotion to feel. SNM have to put up with Facebook, Instagram, and Twitter posts highlighting how wonderful other people’s lives are. We also would like to have quality family time without the drama of tears, tantrums, and meltdowns. We have to cope with our children being excluded from parties, our teenagers stuck at home instead of being out with friends. We can’t see ourselves happily walking our children down the aisle. So yes, damn right we feel resentful.
SNM are the experts of anything to do with our children’s special needs. We are the ones who know our children best. So, we are the ones who should be advising schools on the best strategies to support our children. We keep our eyes on current legislation and entitlements and can argue on the rights and wrongs of latest scientific analysis. Go on, ask me about the latest research, and I’ll have an opinion or answer.
7. Need a hug
Most importantly, SNM need a hug. A virtual one will do. But a real one is glorious. We just want to be noticed and supported.
So, that is how others can help by understanding a little bit about our lives. But most importantly, there are things we can do to help ourselves:
Mindfulness has taken off in the past few years, and it is now OK to stop, look, and notice. We really don’t have to be juggling a million things at a time to feel good about ourselves. Although most SNM are quite simply amazing at multi-tasking, we now have mindful permission to stop and smell the flowers. Hallelujah for that!
- Special time
Make time every single day to have some special time for yourself. A bubble bath, a ride in the car to listen to music, a walk to the shops, etc. Lock yourself in a room, and insist you’re not to be disturbed. 10 minutes is all you need. That’s all.
- Talk about it
It’s OK to talk about how you feel. It’s OK to feel resentful and angry. But don’t let negative emotions take over your world. That will help no one. Look for the positive as much as you can.
- Social media is not reality
Remember that Facebook and Instagram worlds are not real. People are posting images of a life they want you to see. It is not the whole picture.
- Find positive people
Surround yourselves with people who get it. Ditch people from your lives who are negative. Find people who support you and make you feel good about yourself and your decisions. Join groups online of like-minded people for sensible advice and support.
- Educate family
Educate family so they have a true understanding of the difficulties you face. Consistency is the key to helping your child, so it is vital that everyone is on board with the plan.
So in conclusion…
We say to our friends and family that it may look like we’re coping easily, but life can be extremely hard. Go easy on us. But give us support, too.
And finally, but most importantly, look after yourself. You totally and utterly deserve it.
This article was featured in Issue 64 – Teaching the Skills Your ASD Child Needs