If you're like me, what I thought being mother was going to be like, and what it was actually like are two completely and almost opposite things! I think that may have been true had all my children been neurotypical. If you're loving it, then don't read on. I'm glad you're enjoying it.
Having a child with Autism/who is autistic (please let's not fight about terminology), was not at all expected or welcomed. I know I read about those mothers who have children with disabilities and say they wouldn't change a thing. The child had brought so much love and joy to their lives and the lives of others. That has not been my experience. Having a child with autism and an intellectual disability has been hard, unpleasant, discouraging, isolating, infuriating, frustrating and generally awful. I would not choose it. If I could change it I absolutely would. These feelings can feel shameful. We're not supposed to feel this way. But we do and we can't tell anybody.
In our culture, it's not really politically correct or acceptable to say negative things about our parenting experiences. If we believe all the pink mother's day advertisements, with sweetness and light, we can feel like a failure. We're not having that experience. Raising a child with autism is harder than all the other disabilities because of the behavioural challenges. Research has shown this repeatedly. It's not you. It's just really, really hard, and often doesn't get any easier. You solve one problem and another one or two more take it's place.
It's not just you!
The research confirms that parents of kids with autism
are more depressed, stressed, anxious
and based on my own research, have PTSD.
Our kids stress us out because they may run onto the road, self harm, talk about suicide, escape despite our best efforts, and we can't find them. We face rejection from social groups and from our families. We can end up home alone, a lot because it's easier than trying to go out and no one wants to look after them. You may stay home because you're sick of being judged and getting the hairy eyeball from stranger. Or you may over hear comments like - why doesn't she just ..... Some people shouldn't have kids. Even if it didn't happen, I would feel anxious my son would have a meltdown, and it was easier to stay home.
Often children who are autistic are especially beautiful looking children. I don't have research to back that up, but in my experience it seems to be true. (My son is a super spunk.) So you have a gorgeous child, who looks 'normal' who is behaving differently to expectations. Often your child may just look rude or naughty.
Thinking about our child, and how hard their lives are, I would change that. Having a meltdown is not a great feeling. It comes with shame, embarrassment, misunderstanding and feeling out of control and frightened, as well as hopeless. Not being able to make friends, being bullied, not having a partner, not being able to find meaningful work, or play a team sport. The list goes on. If I could make his life easier, I would, without hesitation. Yes, that would all have made my life easier too.
Having a child that does not love you back in typical ways, like hugging, eye contact, doing cute things, lying peacefully in your arms and looking adorable. It's hard. We don't get the usual warm fuzzy feelings that help us bond with our child. It's different. It may even feel hurtful as a parent, you may feel rejected by your child at times. We're only human. I would love my son to look me in they eye and tell me loves me, and hug me. That's not going to happen for me in all likelihood. He called me on Saturday to tell me he was buying me some chocolate for mother's day so I could share it with him!! :-) We don't get a lot of thanks for everything we do above and beyond typical parenting.
So what do we do? We cannot change them, or expect them to change to meet our needs. Our children don't have the capacity to do that and nor should they. We are the parent. Our children were not born to meet our needs. But we do have needs as parents. To be loved and accepted by our kids and our families and community. We can't change any of them either.
Things that have helped me.
Recognising that I do my best and that is enough, because it's all I've got.
My child does love me - just not how I expected, and that's OK.
Accepting that your life and your child/children are different, and your experience is going to be different, and that's OK.
Search out compassion for yourself, your child/children and your nuclear family.
Stay away from people who are not helpful and cultivate relationships with people who are. They may be few in number but they do exist.
Find your tribe - mothers, parents who understand and share your experience. That might be easier online and that's OK. They can still be real relationships. In person can be hard with the kids.
Acknowledge that maybe you do feel cheated out of the motherhood experience you dreamed of. You may feel angry about what you've lost and given up.
Accept your uncomfortable feelings, and that they are yours - not your child's. No one needs to be 'punished' - not you or your child or the people who have let you down.
Maybe you need to find forgiveness - for yourself for not being perfect, for your child/children, for others who have let you down. Lay that burden down.
You are amazing. A term I like is Warrior-Hero. That's what you are. Embrace those parts of yourself.
Thanks for reading to the end. Here's a secret link to the workbook that goes with my book if you want to work through some of these questions a bit more.